Graphic of two women wearing hijabs standing with their backs turned.

Afghan Women with Disabilities Face Abuse and Discrimination

By Drew Dakessian

In the last several weeks, Afghanistan has dominated headlines due to the evacuation of U.S. troops from the country and the simultaneous return of the Taliban. But Afghanistan is noteworthy for another reason: having one of the largest populations of disabled people in the world. At least one in five Afghan households has one or more adults or children with a “severe” intellectual, physical, psychosocial, or sensory disability, according to Human Rights Watch (HRW).

For Afghan women and girls, living at the intersection of misogyny and ableism has meant that they are often denied healthcare, education, and employment, along with other basic civil rights. They also frequently experience sexual harassment.

In 2020, HRW released a 31-page report based on interviews with 23 disabled women and girls, three family members of disabled women and girls, and 14 health and educational professionals living in the Afghan cities of Kabul, Herat, and Mazar-e Sharif. The report detailed multiple instances of abuse, neglect, and prejudice experienced by Afghan women and girls with a range of disabilities.

Employment discrimination

An estimated 90 percent of disabled people in Afghanistan are unemployed as a result of entrenched social biases. Amina Azizi, the head of a small advocacy organization working on behalf of women with disabilities in Afghanistan lost her right leg in a rocket attack as a child. When she first attempted to find a job, she was asked, “Why are you seeking work when those who are without disabilities are jobless?”

“Unfortunately, the percentage employing people with disabilities, especially women, is very low. Although men with disabilities face similar problems, in general it is much more difficult for women with disabilities,” an Afghan government official told HRW, “Because in a male-dominated society, employment of women is less common,” due to gender bias.

Sexual harassment and social stigma

According to the report, sexual harassment against women with disabilities, particularly in government offices, is a widespread problem throughout Afghanistan. A 2016 study found 90 percent of the 346 women and girls interviewed in Afghanistan said they had experienced sexual harassment in public places, 91 percent of them said they were harassed in educational environments, and 87 percent were harassed in workplaces.

When one woman interviewed by HRW went to the State Ministry for Martyrs and Disabled Affairs to obtain a disability certificate, the administrative employee who was working there asked her “to sleep with him for a night” in front of his colleagues.

When she refused, she said they responded by saying: “How do you want to get your disability card when you don’t want to sleep with us?”

Social stigmas are also pervasive among disabled Afghan women and girls. Women of marriageable age are deemed “unfit” for marriage if disabled. A disabled girl or woman of any age often is considered to be a source of shame and a burden for her family in general. According to the report, “Young girls with disabilities are ashamed of going out, and their families exacerbate this situation.” 

Women and girls with disabilities are also often harassed and treated as pariahs when entering into public spaces and are therefore forced to stay in their homes.

Education barriers

Being restricted to the home poses an inherent threat to a disabled girl’s education. A mere 20 percent of Afghan girls with disabilities were enrolled in schools last year. This is largely an effect of inaccessible school facilities and/or reluctance from faculty and staff to accommodate disabled students’ needs.

One such student, who uses a wheelchair, said, “Unfortunately, I cannot go to school by myself — I need someone to take me … and pick me up. The school has no ramp, so it’s hard … to get in and out of the classroom, and sometimes even that’s impossible.”

Map of Afghanistan

Inaccessible transportation

Another potential reason for the low school enrollment of disabled Afghan girls in school is the nation’s insufficient transit infrastructure. Transportation also has a bearing on health care. If disabled women and girls with mobility-based disabilities have no means of transport — especially those who reside in the rural provinces of Afghanistan — they would have to travel great distances to Kabul and other cities for specialized medical treatment.

Inadequate healthcare

The COVID-19 pandemic is proving to have a profound impact on disabled women and girls worldwide, imposing barriers to sexual and reproductive health and rights, disability-related health care, and COVID-19 testing and treatment; reducing access to employment and education; and diminishing disability-related support overall. Domestic violence against disabled women has been a major global problem, as well, according to the United Nations and the U.S. Department of Health and Human Service. On top of these issues, disabled Afghan women also have been forced to contend with their own COVID-related challenges, including limited access to factual information about the pandemic.

Meanwhile, “amputated limbs, visual or hearing disabilities, and psychosocial disabilities such as depression and post-traumatic stress” are the result of over 40 years of war in Afghanistan, HRW reported.

The safety of disabled Afghan women and girls must be prioritized

In previous times of armed conflict, disabled people faced violent attacks, forced displacement, and humanitarian neglect. As seen globally, the effects of war on women — especially disabled women — are often dire. And indeed, the Taliban’s recent reseizure of power in Afghanistan will jeopardize disabled women and girls further.

For one thing, the few disabled girls who have in the past had the opportunity to attend school are now liable to have that option revoked, the upshot of a unilateral removal of educational access. Moreover, for women who do not leave their homes as a result of disability-related barriers, it may no longer be possible to depend on other women to provide them with medicine, food, and other necessities, since these women may cease to feel safe going out in public or may be forbidden to do so. In addition, there’s a chance that the Taliban will close national borders, thereby cutting off essential services and supplies previously provided by nongovernmental organizations. Thus, with the current situation in Afghanistan, all Afghan women and girls are at an increased risk of disempowerment, especially those who have disabilities.

As the United Nations’ Convention on the Rights of Persons with Disabilities (CRPD) states, we must recognize that women and girls with disabilities are subjected to multiple discrimination, and “in this regard we shall take measures to ensure the full and equal enjoyment by them of all human rights and fundamental freedom.”

Even if these civil rights violations applied either to women or disabled people, they would be utterly devastating. Taken together, they amount to an egregious assault on the human rights of much of the Afghan population — with ramifications for the entire disabled Afghan population because they make up such a large segment. Keep in mind that this domino effect isn’t unique to Afghanistan. It occurs anywhere that both disabled people and women are marginalized. And its economic and moral impact can be felt worldwide.

HRW concluded its 2020 report with suggestions for the government of Afghanistan and its international partners. None of the recommendations to the former such as “Include human rights, including the rights of persons with disabilities, in all bilateral and multilateral discussions with Afghanistan” — are now relevant because the Afghan government has since been dismantled.

However, it may still be possible to rectify the damage already done to disabled Afghan women and prevent additional degradation moving forward. It is paramount that the international partners of the former Afghan government “ensure that funding for civil society and economic and social development include benchmarks and reporting regarding progress in ensuring the rights of persons with disabilities,” as HRW suggests.

In other words, the Afghanistan government must be held accountable for the abuse and discrimination against Afghan disabled women, with a clear plan for restoring the protection of their rights and safety moving forward.

Drew Dakessian is a Freelance Writer for WID.

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What’s Up WID: Disability Justice Transcripts

Ashley Inkumsah:

Hello everyone, and welcome back to What’s Up WID, the World Institute on Disability podcast where we discuss what’s up in the disability community across the globe. If you’re new here, I’m your host Ashley Inkumsah, and on today’s episode I will be sharing with you my very, very fruitful conversation with Dustin Gibson about the disability justice framework. Now, Dustin’s work centers around eradicating institutionalization and incarceration. He is the Access, Disability, and Language Justice Coordinator over at PeoplesHub. He is also a Peer Support Trainer at disABILITY LINK. He’s a founding member of the Harriet Tubman Collective, and he also works with a number of other organizations that focus on abolishing the carceral system and the oppression of people with disabilities.

Ashley Inkumsah:

Dustin and I, we really, really had a fantastic and a raw conversation about the disability justice framework and the origins of ableism and its interconnectedness with other systems of oppression. I really, and truly hope that you enjoy our conversation. Thank you so much, Justin, for joining me for today’s episode of What’s Up WID. If you could please explain to us how the disability rights movement changed the lives of people with disabilities and where it fell short.

Dustin Gibson:

Judith Butler talks about the idea of being able to assemble in public and deliberate, and debate, and gather being central to participating in a democracy. I think what disability rights movements… I think of it in factions as well. I don’t think that it was just this one large monolithic push for disability rights, but more so a bunch of smaller efforts that combined to create this critical mass, I guess, of people that are pushing in different areas for the rights. I view that in the lineage of the black radical tradition too, knowing that some of the history behind how students organized and other disabled people organized in California to bring about even access to education or the 504. Knowing that they got those templates and that strategy from the US black South and the traditions of Ella Baker and Fannie Lou Hamer.

Dustin Gibson:

I view it as a part of that. It’s also a fight for autonomy and agency in the same way that people like Fannie Lou Hamer were fighting for. Thinking about being able to choose what you do with your own body, especially as a black poor woman at that time and to-date too. I think about the disability rights movement as something that has provided, one, an articulation of what it actually means to be disabled in a society that is inaccessible and ableist. Then two, it’s given a platform and a possibility of being able to deliberate in public and being a part of the public, which is also central to democracy. When we talk about we the public, I don’t think that disabled people are necessarily included in that inherently. What the disability rights movement has done, in my perspective, is chip away at that quite literally of thinking about the smashing of curbs and whatnot.

Ashley Inkumsah:

Where would you say that it fell short?

Dustin Gibson:

As you said that I’m thinking about Kwame Ture’s quote. I’m not going to put it into a lot of context, so I don’t want this to be stripped out of context. I would just ask people to maybe look it up. But when he was talking about non-violence as a strategy and saying that Dr. King made one fallacious assumption, and that was that the United States had a conscience and they don’t. I think that the assumption of the disability rights movement, along with other civil rights movements really, is that the settler colonial state of the US, the project of the US, the imperialist project that it is, could actually grant people these types of rights and would want to. It lives within this construct that is inherently ableist, racist, misogynistic, patriarchal, imperialist, all of those things and more. It lives inside of that project.

Dustin Gibson:

I think the failure of it is to not be able to capture and be in solidarity with other movements. That’s not to say that that didn’t happen. It definitely happened, it still happens now. But it didn’t do in a wholesale way that… and this is not just an indictment of the disability rights movement. This is all civil rights movements in my perspective too, that they haven’t forged enough solidarity cross-issue, cross-group, cross-people in order to actually bring about what I would believe is a revolution to actually see the liberation of people and see power in a way that we need it in order to… I mean, literally in this point thinking about the environment in order to survive, us and the planet.

Ashley Inkumsah:

Can you talk about how the disability justice movement, how it addresses that and how it seeks to address the shortcomings of the disability rights movement?

Dustin Gibson:

Yeah. I do want to caution that. I don’t necessarily think that we have a disability justice movement right now. I say that as somebody that is extremely concerned with prisons, jails, nursing facilities, asylum, state hospitals, all forms of institutions, group homes. Places where people’s freedom has been taken away from them. Places where they’re under 24/7 surveillance. Places where people are monitored even outside of these carceral apparatuses. Just thinking about how there is not just enough attention paid to that. Even in a time where, we’re still in the middle of a pandemic where the majority of the people that have died from COVID have been people that are residents or are being held captive in nursing facilities and other types of institutions like prisons. That’s not even counting the amount of people that are connected to them in somehow that have contracted it because of that.

Dustin Gibson:

I think about how little attention is paid to those people who are mostly disabled, and knowing that a movement can’t actually move without those people. I think about the prison abolitionist movement, and one of the things that I appreciate about it is that it works from inside of prisons. People inside of prisons are the ones organizing, are the ones articulating the vision, are the ones telling us what is happening in prisons, telling us the impact on it. There’s this communication that exists in a way that it doesn’t with some of the other forms of institutions. I think that’s something that we really should be concerned about and reflect upon as people that are interested in disability justice and building movement. Now, I will say that we are building movement. There is an ecosystem that is forming. There’s a lot of disabled artists that are articulating our experiences in creative ways. They’re receiving platforms now or building platforms that I don’t think we’ve seen with artists that would socially and politically identify as disabled.

Dustin Gibson:

I guess another point would be tying our identities or understanding our identities as political, as an important aspect of disability justice. Whereas though I think, for a lot of different reasons, the disability rights movements, the traditional ones, weren’t at a place where they’re able to understand themselves as people that are politicized regardless of how you identify. Disability justice is attempting to… well, I think it is a opportunity to be able to reach people that will never identify as disabled for a lot of reasons. There’s a lot of reasons in which it’s dangerous to identify as disabled. You could be tracked into a substandard education system. You can be tracked into the prison system. Even right now, one of the pushes is to figure out how many disabled people are incarcerated. I would caution against that too because there’s been no indication to say that if they find out people are disabled, that they’re to do anything to actually benefit or improve their lives. It’s quite the contrary.

Dustin Gibson:

Those are some of the things that I think disability justice asks us. I don’t have answers for it or solutions, but I think that the questions that animate the work of disability justice are really distinct from those that disability rights asks us. Disability rights asks us who’s public, which is very important, critical. It asks us, are these institutions accessible? Is there accommodations being provided? I think all of that is important, but then I also think that work of, how do we fight for the rights and secure the rights of people that don’t know that they’re disabled, or reject the label of disable? Or how do we fight against all of the disabling systems and violences that take place without marginalizing the people that will be disabled regardless of those systems or those violences? Those are questions that, again, I don’t have answers to, but I think that animates the work.

Dustin Gibson:

I would say the last thing that I see as a separation is the focus on the individual through the law. The ADA, or the Americans with Disabilities Act taking its definition from the 504 provisions of the Rehab Act of ’73 is carving out individual accommodations for people. Yes, there’s this way in which we build an accessible world that we’re supposed to. We know that we don’t actually do that, so it’s failed in that regard. There’s no way to actually enforce these things. How the US, as this settler colonial project, enforces things is through criminalization. We know that that’s not going to actually get us anywhere. That individual approach to accommodations is something that disability justice pushes back against and understanding that what we’re doing has to be collective in a way that, yeah, those individual accommodations they’re set up for specific people rather than how we would all interact together.

Ashley Inkumsah:

Yeah. Yeah, you mentioned that we’re not yet in a disability justice movement, but we’re building upon one. I think of last summer how Black Lives Matter, that was a movement, so to speak. It was supposed to be, but I juxtapose where we were, again, last summer against where we are now and how it’s not really so much on the vanguard. People are not nearly as energized as they were at that time. How do we build upon to create a movement rather than just a moment? Can that even be done in 2021 where, I don’t know, people’s attention spans are so whatever, and social media incentivizes people to say things on social media and they feel like they’re making a change but they’re not really doing much of anything. How do we build upon and create a movement rather than a moment?

Dustin Gibson:

Yeah. I mean, I think that’s a good question and I’m not sure if I’m the person that’s most equipped to answer that. But I do think that, well, I know for sure that those moments, the moments of polarization, which I think we need more polarization. I think we need to be clear about we’re fighting against fascists. We’re fighting against people that quite frankly would kill us if they had the opportunity to, and do in very methodical ways on a daily basis. I think we need to be clear about that and choose sides and actually root down and build what we need. A part of that is understanding that those moments of protests, those moments of uprisings are opportunities for organizers to create opportunities for those people to become a part of the movement.

Dustin Gibson:

Although it’s not as visible as it was last year, even taking from the protest after George Floyd was murdered. People rooted down in their local communities and got together and formed networks to be able to build strategy around what it actually means to defund the police. I mean, to the tune of like almost a billion dollars in a year, there’s been disinvestment from police. Now, there’s been counterattacks to that in federal funding and all of these other things that have happened. But what I’m taking from that is, after those moments of protest, what happens is people go into rooms. People hold political education workshops, sometimes four people show up, sometimes six people show up. But those people show up continuously and hold that space and think of new and innovative ways, and sometimes old ways, to build what we actually want to see.

Dustin Gibson:

I think that’s what builds movement, along with art. I think art is such a critical aspect of how we articulate our experience and document what is happening right now. I see more disabled artists becoming engaged in a political type of craft, I guess. Even the craft itself of disabled artistry is something that, Simi Linton, one of my mentors who referred to was like, “Disability is an aesthetic.” Thinking about that process of crafting and creating while being disabled is also teaching us what access is and how to engage in access. I think that work of, how do we perform access? How do we perform access is allowing us to interact with each other and the planet in a different way, which I think is the vehicle to abolition, is the vehicle that we’ll use to get to wherever we want to go. Because the how is just as important as the what.

Ashley Inkumsah:

How would you say that the systems of racism, ableism, sexism, homophobia, transphobia, et cetera, how do they interact and reinforce one another?

Dustin Gibson:

I would say that they’re literally dependent upon one another. One can’t exist without the other. They’re weaponized and used against us that way. There’s a bunch of things we can cite. We can cite that queerness was in the DSM up until the ’60s. We can cite how people… right now in California there’s a bill to provide reparations for people that were forcibly sterilized in institutions, prisons. It was like over 20,000 people that they had documented and about 350 are living now. One, I should mention that giving people $25,000 for that is absurd and insulting. But it’s an acknowledgement that something happened. But thinking about the people that were forcibly sterilized and still are in some cases, the women in North Carolina, the poor women, the black women in North Carolina, in Sunflower County, Mississippi. We were talking about Fannie Lou Hamer earlier, and also people like, disabled people that go into institutions where those same…

Dustin Gibson:

The justifications for attempting to get rid of populations essentially, eugenics, the justification for that has always been these type of marginalized identities. That’s one convergence of what that looks like. I think of prisons as a place where we can see the convergence of this. You can see that the majority of women, now I’m speaking specifically for Pennsylvania, have experienced some form of sexual assault either prior to or during their incarceration. You can also see higher rates, disproportionate rates of psychiatric disabilities within the population of people in prison. It’s a place where you can see the outcomes of what is happening in the free world, I guess, and who is actually being targeted by it. What we often find is people are not… I think Audre Lorde said we’re not singled layered, so you’ll find that people have multiple identities. Those are the ones that are targeted the most. Those are the people that are, I don’t want to say… for lack of a better phrase, I’ll say most depressed.

Ashley Inkumsah:

I think a lot of people think of the civil rights movement or right now Black Lives Matter movement, women’s rights movement. People think of them as being separate movements, but they don’t realize how it’s all connected to one another. Liberation for one is liberation for all, so definitely [crosstalk]-

Dustin Gibson:

Yeah. I even think about that in the context of slavery, and I think about Sojourner Truth’s freedom journey, and how she infamously walks away, doesn’t run away, from a plantation. But after she was allegedly supposed to get her freedom papers, the thing that kept her on the plantation was a hand injury or a wrist injury, which is essentially a disability. The justification was, you want to be able to be self-sustainable. So thinking about how those, her identities, could be leveraged at different points to do the same thing to benefit the institution of slavery and take away your freedom. That’s, I think, some of the more important things rather than just thinking about… all of it’s important, so yes, thinking about how the systems interplay with each other and how they feed off of one another, but also how they can be leveraged against and justified at any point in time.

Ashley Inkumsah:

Yup. I think of the phrenology that was used to justify slavery, that they said that the slaves’ brains, the composition of the Africans their brains, that’s what made them inferior to whites therefore they deserved to be slaves. Those of them who wanted to run away, they were considered to be mentally unstable as well. So all of it is connected and it has such historical… if you go back you see everything is connected. All of this [crosstalk]-

Dustin Gibson:

Yeah, those census records that tell us the majority of free black people in 1860 or 1840, or people that are, essentially in their words, idiotic and asinine. People that are still in enslavement, or slaves, or people that are of sound body and mind. That pathologizing of blackness and disability happening at the same time is something that still comes out today. What I would refer to or Talila Lewis would refer to is the manufacturing of disability and things like excited delirium or oppositional defiance disorder. Where it is depending upon a character of how black people behave in order to create and inform this idea of what a disability is. Then from there you can purportedly treat people, which is usually punishment.

Ashley Inkumsah:

I think a perfect modern day example is how you see black women, how we die at such a disproportionately higher rate at childbirth and how black women are not believed when they say that they’re in pain when they’re pregnant, and then it results in that happening. It’s that intersectionality of being black, being a woman, and having a disability, and not being believed and just being made to be gaslit, and then ultimately it’s killing us.

Ashley Inkumsah:

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Ashley Inkumsah:

Why do you think that recognizing this intersectionality of multiply marginalized people with disabilities, why is that so important?

Dustin Gibson:

Yeah, I think that’s important because as we understand disability, I’m speaking mostly for myself. How I understand disability is really through a lens of whiteness and it is constructed by and for white people. Not just white, just wealthy, white people as well. I think it’s important because disability lives in every group we can think of in the world. I also believe that it lives within us in our bodies and minds differently. I don’t think a diagnosis of schizophrenia or cerebral palsy is the exact same thing in people. Some of the things that separate it or make it unique, I guess, and how it lives within us, is our social determinants. It is socioeconomic status. I think that there’s this cog wheel. When we do workshops sometimes we have a image of a cog wheel that says trauma and violence is a cause and consequence of disability, and poverty is a cause and a consequence of violence, and violence is a cause and consequences of trauma.

Dustin Gibson:

All of those things creating and shaping what our actual experiences are. If we respond to disability, that’s what we do with the law or with disability rights, we respond to what this disability is and how you can accommodate that stagnant thing. With a disability justice perspective that is relying upon or is rooted in one of the principles being intersectionality, is to understand that all of those other things shape how we live and shape also how we respond to it. Rather than it being this individual thing, it has to be more wholesale than that. Disability doesn’t live in a vacuum. I think that intersectionality is a lens to be able to view how our experiences are shaped by, not just our other identities, but how our identities are literally interplaying with the systems of domination and oppression and power.

Dustin Gibson:

Power being the key in that definition from Kim Crenshaw about intersectionality. As an organizer, as somebody concerned with attempting to find new ways of being I guess, identifying that power is important for us to seed it, and build it, and leverage it, and do all of the things that we need to do to change that experience if that experience is one that is being harmed or having violence inflicted upon us.

Ashley Inkumsah:

Why is it so important that we center the experiences of those who are multiply marginalized instead of centering scholars? Why is it important that we center their experiences when we’re talking about the disability justice framework?

Dustin Gibson:

I think that the idea of centering specific people has been somewhat convoluted, and I do think it’s really complex. I think that we should… yeah, I don’t know. I think we should be cautious about what that actually means to center people. I think about times of, when somebody is murdered by the police and we say we need to center the families. Oftentimes what that means is the families are now in a position where they have to give policy recommendation. Where they have to say how they’re going to… how we should, as a collective, stop this from happening to somebody else. I think that’s an impossible situation to be put in. One, I think it’s very unfair. I don’t think it’s actually supportive. I mean, Mariame Kaba. I would recommend Mariame Kaba’s last book, We Do This ‘Til We Free Us. Where her and Andrew Richie has a article where they discuss some recommendations of what support in abolitionist politics looks like in moments like that.

Dustin Gibson:

I say all of that to say that this is why movement is so important because we need scholars, we need artists, we need people that are not disabled. We need people that are not in prison to also be contributing. We’re centering the experience. That means that we’re believing what people are saying about their lives. We need impacted people to tell us what is actually happening to them in order to understand it. That I would say is focal, and that’s what I would mean by, and I think disability justice principles are articulating when we say leadership of the most impacted. I come out of the tradition of independent living movement where one of my elders, Ken Mitchell always says, “We’re the experts of our own lives.” Which is a very radical thing.

Dustin Gibson:

At a time, 50, 60 years ago when it was widely believed, more widely than now, that disabled people couldn’t have any type of control over their finances, their living situation, have a job. It’s a radically different world from then. So for them to be saying experts of their own lives at that time, I think, speaks to the level of self-determination that has to exist within movements. That leadership of the most impacted is one of those things, I think, that is hearkening back to or calling in the self-determination piece that has to be a part of what we’re doing when we say we want rights for disabled people or to build power amongst ourselves.

Ashley Inkumsah:

Absolutely. What do you think the role of non-disabled, not only non-disabled, I will say white people. What is their role in this movement? What do you think their role is?

Dustin Gibson:

Yeah, I think their role is to be in principled struggle. Yeah, I oftentimes see, I guess, good-intentioned white people I would refer to them as maybe, liberals really. I’m taking liberal from Assata Shakur writings when she’s like, liberal is the most meaningless word in the dictionary, and then she goes on to talk about why. Because it means nothing. But I would say that, for those people it is to literally be in principled struggle. By that is like it’s rooted in something, this is our goal and actually have a thought behind it. What I see a lot of the times is liberal white people is just literally blanketly follow whatever person they think is the most impacted and is popular, and there’s no critical analysis behind that. We don’t need people that just can’t, are not forming their own thoughts and are just being led by whoever we want people to also be in that struggle of trying to answer some of those questions with us.

Dustin Gibson:

That is not like… if we truly believe our liberation is bound up with one another they have to see themselves as a part of this. When we talk about increasing access, when we talk about participating in a democracy, yeah, they also have to be people concerned with that. If they’re doing the oppressing, then they have to figure out how do they stop doing the oppressing. If they’re not the ones doing the oppressing, they have to articulate and find ways to come up with some of the same solutions that we are. By we I’m speaking specifically about black people. There’s definitely spaces where I believe it’s important for black people to convene and only black people. In those situations, there’s a bunch of ways to support.

Dustin Gibson:

Resources could be the first thing and that’s financial that’s you could even provide access, accessibility. There’s, I think to be more creative is, I guess, what non-disabled white people should do, be more creative with how they contribute. That’s not to say that there’s not a lot of people contributing now because there is.

Ashley Inkumsah:

Absolutely. Why would you say, I should say, that it is crucial that we adopt the disability justice framework and recognizing intersectionality. Why is this framework so important to the liberation of people with disabilities?

Dustin Gibson:

I think it’s important because we need a vision. We need something to build towards. I think another failure of the disability rights movement ended with legislation. It feels like, and I mean, this is something I’ve debated with with elders is it feels to me as somebody that wasn’t around, wasn’t born when these movements were taking shape and building, that the end goal felt like the signing of legislation with the enforcement, and we thought it would do something that it didn’t. I even think about Olmstead as a decision where there’s a lot of… Olmstead being the Supreme Court case with Lois Curtis and Elaine that they take it all the way to the Supreme Court in order to get integration mandate. Meaning that you can live in your community or have the option to live in your community rather than being in an institution.

Dustin Gibson:

Also Lois Curtis is somebody, black woman from the South in the South that creates incredible art too and also on the spot. Just drawing portraits of you as you stand in front of her and not even being in conversation with you and it coming out incredible. But I think that ceiling, there’s a cap on this colonial project. We are never going to be able to receive a full bill of rights from this project, so disability justice is important to adopt for people that are concerned with the lives of disabled people. It’s because it forces us to imagine outside of that, to build outside of that. When I think about abolition, which is also a part of disability justice, it is not something that is just telling us that we want to destroy the death making machines that are prisons that are institutions that are policed.

Dustin Gibson:

It is, we want the end to that to abolish that. But we also understand it as a project of absence, like Ruthie Wilson Gilmore talks about. That is a invitation into building something. That is a invitation into envisioning. Quite literally, just I guess in a sobering way, it is like being able to see ourselves in the future. Which I’ve worked with a lot of young people, young disabled people, some in jail, some not. That just thought of, “What do I look like in 20 years?” Is not something that’s common. I think disability justice is inviting people into just pondering that. With that, we can actually start to build that today, which people are building that world today but to the point where we can even imagine it. I think that’s what it does for us. Because even if disability rights…

Dustin Gibson:

Say the ADA did everything that it’s intended to do, we still have to ask that question of, now what? What do we have now? Now that there’s access, say in a world which I don’t believe there’s ever going to be 100% access. I think there will always be access conflicts. That’s also a part of disability justice is building the muscle and the skill to be able to respond in those moments. But so, if that all works and we have 100% access, then what is left is what we want to build. That cap on disability rights is not giving us that invitation to build that in a way. It’s asking for people to do something for it. We need power. We need to be self-determining and struggle through that together. We literally can’t get that from somebody else.

Ashley Inkumsah:

I’m curious, how did you get involved in this space? How did you get involved in the disability activism space and why?

Dustin Gibson:

Like I said, I came out of independent living, and independent living movement, and working at a center which was in Wilkinsburg, Pennsylvania, which is a borough of Pittsburgh. Yeah, I was, to be around people… I would hear stories of the center that we were in, the physical building, was a nursing facility built in the mid to late 1800s for Protestant women. To go into it on a visceral level, to see disabled people in power chairs, blind people, deaf people, all types of people with all array of disabilities in a space that was literally set up for people to go in and be trapped there and stay there forever and die there. To see them reclaim that and to see themselves as people that are one, capable, and then two, fighting for other people to believe in themselves as capable as well. That was just a intoxicating feeling for me to know that people are concerned with that type of power.

Dustin Gibson:

But then after that, that’s the time where the uprisings in St. Louis where my people are from, literally the place where my people are from. Simultaneously, police killing people in Pittsburgh, namely Bruce Kelly Jr. who was a couple of blocks away from the center that I was just talking about with diagnosed disabilities that the police are aware of murdered. From there, to be around people that are actively attempting to change that, that’s where I would say were some of the moments that started it. I mean, I have a longer trajectory than that, because I think the experiences that I had growing up, and I mean that continued to this day, absolutely shaped how I viewed the world.

Dustin Gibson:

I point to those moments are the moments in which I developed the language I was given game by my elders. Milt Henderson is somebody when I first came to Pittsburgh really just took me under his wing and showed me how to, I mean, really how to move, how to navigate the city, who was who, what was what. I developed a lot of language around that period and also a lot of courage. Yeah, does that answer the question? I felt like I just started rambling a bit.

Ashley Inkumsah:

No, for sure. I was just curious on how you got started. I always say that we all are the sum of our own lived experience and those of us who work in this space and advocacy and justice spaces, social justice spaces. Oftentimes yes, we’re shaped from the time that we’re very young to be on that trajectory, to do what we ultimately end up doing. So I just wanted to hear and yeah it’s an amazing [crosstalk]-

Dustin Gibson:

I know this is audio, so I’m just letting people know that I’m not in my head right now.

Ashley Inkumsah:

Well, thank you so much for this conversation. It’s been amazing. It was great to think out loud with you and really just unpack all these systems. It was amazing. I really appreciate it.

Dustin Gibson:

I appreciate you for having me and having this space.

Ashley Inkumsah:

I really appreciated Dustin’s expertise in abolition, and really being able to examine the disability justice framework through the lenses of the many interconnected systems of oppression. It was such a pleasure to chat with someone who is really working on the ground with so many organizations fighting for the liberation of people with disabilities. Dustin really laid out some actionable steps that both disabled and non-disabled people can take towards liberation. I really did come away from our conversation feeling personally empowered and galvanized, and I hope that you did as well. Now, you can find transcripts and American sign language interpretations for each and every episode of What’s Up WID over on our website at http://www.wid.org/whats-up-wid. To close out with our famous last words here on What’s Up WID paraphrasing one of our founders, Ed Roberts, “We need to get out there and change the old attitudes so we can build forward better.” Thank you once again, and I will talk to you next time.

Banner graphic of Tom Olin with text: Tom Olin, The Role of Artists in Disability Activism, September 24, 2021, What's Up WID.

What’s Up WID: The Role of Artists in Disability Activism

(music)

Ashley Inkumsah:

Hello, everyone and welcome back to What’s Up WID, the World Institute on Disability podcast where we discuss what’s up in the disability community across the globe. I’m your host, Ashley Inkumsah, and today I honored to share with you my conversation with photo journalist and documentarian, Tom Olin. Tom started documenting the disability rights movement in the 1980’s with powerful thought provoking photographs, and since then, he has continued to use his photography to document historic disability rights events. It was such an honor to chat with him about the role that artists play in disability activism, and the importance of community organizing and I hope you enjoy our conversation.

Ashley Inkumsah:

Thank you so much for joining me, Tom to have this much needed conversation. My first question for all of our guests is always, how are you doing today?

Tom Olin:

I’m doing very well since you have called, and I am very much enchanted with WID and always have been. I mean, I have a little history with WID just because it was in the … It came about in the ’80’s at the time when disability was becoming something more than what it had been. More things were happening that we were doing things together. We were creating organizations. We were fighting on many different fronts, whether it be independent living, disability rights. Things were happening. There had always been history, but this was a time when a lot of people were doing different things in different areas, different parts of the country, and yet, we were kind of … It was kind of interesting, because back then, we had magazines, and we all actually … When things were happening, the magazines were actually telling us, the rest of the country, meaning that somebody, something happened in Berkeley, people in Michigan and Florida would know about it, which is a little different from today. Now, we have to go to people’s websites and figure out what is happening.

Ashley Inkumsah:

And social media, of course, yeah. That’s the new wave of the future, mm-hmm (affirmative).

Tom Olin:

I am very happy to be here. That’s a long answer to say I am enjoying myself being with you.

Ashley Inkumsah:

Yes. Well, I’m very happy that you are here, and WID is very enchanted with you, so very happy to be having this conversation, and I know that yeah, like you were mentioning, you’ve been involved with the disability rights movement since 1985. If you could share with us your background, how you got involved in the Disability Rights Movement, and disability activism, I would love to hear your story. Bring us back to 1985.

Tom Olin:

Well, you have to kind of go a little bit earlier. I grew up with dyslexia, which meant that I was a different … I was in a different category when … In school, if you had dyslexia, you were usually in a dummy class, slow learner class. I got a taste of what it felt like to be different. I got to hide that and I couldn’t hide that very well in grade school, but I got to figure out how to hide it in high school. I got to do oral reports and things like that to get my grade up. Then I went onto try to go to college. I ended up in college, but had to drop out after the first semester because I had to write. Oh, my God, I have to write? I can’t do it oral? Nope. They didn’t have any … We didn’t have any laws back then. ADA was very far in the future. Yeah, 20 years in the future.

Ashley Inkumsah:

Mm-hmm (affirmative).

Tom Olin:

It ended up in that time period, Vietnam War was going on, and I was … Well, when I dropped out, I was eligible. I ended up not going to Vietnam, but I ended up doing community work, and I ended up in a rehab hospital in Grand Rapids, Michigan, and that’s where I kind of, my soul and my what, my education of people with disabilities took a very sharp upward learning curve. I was in a place that had a lot of quadriplegics, paraplegics, people that need spinal work, people that didn’t have limbs.

Tom Olin:

It was a lot of different disabilities in a rehabilitation hospital where I met some good people that I’m … Some of them I’m still in touch with today, and some of them I’m actually working in a disability world with, and that’s when … Shoot, that’s what, 19- … I was 19 years old, and there was actually a person, Diane Coleman, who is a person that has a group called Not Dead yet, and she was 17 years old at the time, so but it was during that … That’s when I kind of skipped … I got to see people especially in traumatic injuries that would say almost a week after their accident, would be in a rehab facility, and it was like, okay, I’m going to live, or I’m going to die.

Tom Olin:

That was like … It was that black and white of … I was in a wing where the kids were my age that were … It was like, and then an orderly. I was an orderly at that time. It was high drama, real high drama. You got to skip it. That was about 10 years from that point, and I ended up in California, in Berkeley. Actually, I was at … Just before that, I was living in Brazil, on an island, and I said, “What do I want to do with the rest of my life?” I had nothing, nobody to talk me … Nobody who spoke English, and I could speak Portuguese, but not conversational wise. I ended up talking to myself and answering myself and I said, “Oh, okay, what do I want to do with the rest of my life?” It was a meditation life, and what it brought me back to is all the friends I had in the rehab hospital. I said, “Okay, that means I should get back into disability. Where should I go? If I can go anywhere in the world, where do I go?” Berkeley, of course.

Ashley Inkumsah:

Mm-hmm (affirmative), yeah, it’s natural. That’s where everything is happening.

Tom Olin:

There was that movement. There was all … Yep, yep, and so I went there … Went there with some friends, a family, and we … That was ’80 … It must have been ’80, I’m not sure, ’81, ’82.

Ashley Inkumsah:

Mm-hmm (affirmative).

Tom Olin:

But what was interesting is by that time, Berkeley, the activism … That was after the 504 demonstrations. You still had the organization. You still had a Berkeley Cell. I became an attendant, and I worked at the Berkeley Cell. I also worked at the University, at the disabled citizens program, which I really loved, because it was one of the first programs, attendant programs around, run by people with disabilities, and that’s kind of where, at that point, I decided to get into media too, because I thought, okay, that’s what should be happening in the disability world. I should be doing something with media, and so I was doing a video, and at that point, I was in a video production company, and I was what they called a assistant director to all that meant was that you … Whenever someone didn’t show up, you went and you did their job. At times, at quite a few times, I was a camera person with this big video camera, and we took Contra Costa County, community college there.

Tom Olin:

The Apple Valley Community College it was, and took a course, a camera course, and then from there, I became a photographer. But, at that point, I had to still work, so I still was an attendant, and then did the photography on the side. Actually, my first series of photos were a person out of the Berkeley Cell that had a chemical sensitive disability. It was kind of interesting how to capture a person with chemical, with a chemical sensitivity. How do you do that?

Tom Olin:

It was kind of a interesting way to try to figure out how to show other people, because it took … I had a great time with the photos, and I was also … With disabilities, I was at … In the Bay Area, there’s the Bay Area Recreational Program, BORP, that I was involved in, so I had not only … As an attendant to people with disabilities, I was in different programs that had involved with disabilities. There was a state advocacy organization called … At that time it was called California Association of the Physically Handicapped, CAPH, and it was the largest state organization by people with disabilities in the country. Definitely and that became a board member out of, in Contra Costa County in our chapter.

Tom Olin:

In the meantime, one of my friends, from the rehab hospital, Diane Coleman, was in California, I mean, in Los Angeles. We had been spending summer vacations together, as we were living together, and I mean, I’ll throw some names out that might not make any sense to you. But the group that was starting was with Paul [Longmore 00:12:03], Carol Gill, Larry [Voss 00:12:05], Anne Finger, Barbara [Waxman 00:12:09]. I mean, there was just an amazing group of people that … That was back in the early ’80’s that were … Just really culture was just as aware that we were just forming. The culture in those … The culture makers were there.

Tom Olin:

I mean, Paul Longmore and Carol Gill. I call Carol Gill the mother of disability culture. It was just so much fun at that time. Around that time, in ’84, in ’84, at our state conference, ADAPT came to town, or came down and gave a lecture, and both Diane and I just said, “Uh-oh, this look like what we’ve been wanting for a long time,” and so that fall of ’84, I had my camera, one roll of film. We went to our first ADAPT demonstration, and on that 24 roll, I mean, some of my most iconic photos came out of that first roll. It was a roll of handcuffs behind a wheelchair, which was probably one of the first real, something that had never been done … I mean, it was so … I was just really lucky that no one else was taking photos at the time.

Ashley Inkumsah:

It wasn’t like now.

Tom Olin:

Especially at that kind of-

Ashley Inkumsah:

Yeah, it wasn’t like now where everyone’s always taking photos.

Tom Olin:

Yeah, we’re getting some good people though.

Ashley Inkumsah:

Mm-hmm (affirmative).

Tom Olin:

I’m excited about what’s happening now also. But you’re right. Everyone with a phone can take a picture, and because a lot of times, it’s not being kept very technical. It’s what is happening in front of you that sometimes makes the news.

Ashley Inkumsah:

Exactly. Exactly.

Tom Olin:

I was really good at being at the right place at the right time.

Ashley Inkumsah:

Mm-hmm (affirmative).

Tom Olin:

I don’t call myself a very technical photographer. I just, like I said, am there at the right time … If I let myself just be, I kind of knew where the flow of the energy was going to be, and I could go and be at that point, and wait for that action. I was lost in a world, and people could talk to me and I wouldn’t even hear them. I just was … I could find myself at the place where I should be. That’s kind of how I started doing … I mean, at first, it was just for our local California Association of the Handicapped newsletter, and for the newsletter. Then other people wanted to have photos, and so luckily Diane had a very good job. I could be in a dark room doing pictures, and I also … At that point, I was not an attendant, except for a friend.

Tom Olin:

Every once in a while, Carl Longmore would, “My attendant didn’t show up,” and so I’d run out to get him up or whatever was needed. That happened, but I was also … I was a temp in the [LA Unified 00:15:54] as a teacher’s assistant, and I could work any day I wanted to throughout the whole year, and then also say, if I didn’t want to, if I was going to on an action, if I was going to travel somewhere, then I would just tell them that I’m going to be gone for that. It worked out perfect for me to be able to really put my growing talent to work. After a while, after years, I can still remember the point where I said, “Oh, I don’t have to have another job. I’m doing okay,” which that was doing photography. That’s when I said, “Oop, I guess I can call it professional finally.

Ashley Inkumsah:

That’s amazing. That is amazing. What role did you feel like you were playing within the movement as an artist, as a photographer, and what role do you think that artists play now in the movement for disability rights, disability justice?

Tom Olin:

Okay, getting right down to it. I like that. Well the thing is, I got to see something that a lot of people nowadays don’t get to see is that, because I was the only one doing photos, especially in that kind of genre of action advocacy, what was really great about that time period is that we had magazines. Those magazines had photos in it so every one got to see what was happening. You don’t see that as much today, and so what that meant is that when there was an action, like in Chicago, people got to look at it and say, “Hey, we can do that in our city.”

Tom Olin:

In fact, it got so good, I mean, everybody was so good at it, that I remember it was either the … I think it was the [Disability Rags 00:18:07] that, a group in Brazil, they had a disability group, and they heard all … They would read about disability and things that were happening. But until they actually saw the pictures, it was then they could say I could do that. We can do that too. Because there’s a thing that happened with a visual thing that … With dyslexia, I’ve always been really lucky to have a writer with me, around me, or someone that could say, “Here, do a good capturing. Do a slow story from this.” I’ve always been able to find someone to do that, and so not only could the visual say something, but a good narrative is always really good. I mean we lack-

Ashley Inkumsah:

Absolutely.

Tom Olin:

Today, we lack a lot of narratives that need to be out there today.

Ashley Inkumsah:

Mm-hmm (affirmative).

Tom Olin:

I mean, today … I mean, let’s say, right now we have people and in the South, I mean, in the East, and the South, where we got people that have no electricity for their ventilators. We have a crisis, but we also have always … I mean, for a whole year, we’ve had a crisis. We’ve had more than … We had around 200,000 people with disabilities die from something, from the virus that they died in congregated settings.

Ashley Inkumsah:

Yep.

Tom Olin:

That was rampant, and it still happened. In fact, it’s growing again, just like the [inaudible 00:20:03] is growing in a regular population, the disease is growing in the institutions and congregate settings. What I’m kind of saying of that, is that where is our narratives? Where is our visuals on that? Those things we don’t have out there anymore. If you don’t have those things, people of like mind can not say, “Okay, we should do something.” This is why they have that feeling. Back when we were doing it with the ADA, people could say, “Oh, gosh there’s a movement. I belong to it. I belong to this. I have this … I have other people that think like me, and are with me.” Nowadays, yes, you know that there are people that probably think like you, but you’re not together.

Ashley Inkumsah:

Mm-hmm (affirmative), absolutely.

Tom Olin:

You’re not working together.

Ashley Inkumsah:

Yeah, you know what I think?

Tom Olin:

Yes, some people are … Yeah?

Ashley Inkumsah:

I think it’s maybe there’s an oversaturation because there’s so much multimedia out there. There’s so much, it’s hard to find your community when there’s so much multimedia, and also the 24 hour mews cycle, I think there’s only certain kinds of glamorous stories that are told, and people with disabilities are often left behind because the story isn’t glamorous for the mainstream media, so to speak. I think that has a lot to do with why nowadays these stories aren’t being told.

Tom Olin:

Yep, mm-hmm (affirmative). Well, it’s the visuals … Sometimes it’s not the narrative. Like I said, until people saw some photos and stuff like that, you tend to take that into … One visual can really unite some, a group of individuals, an organization, and we don’t have enough of that. That’s where the artists should be coming into play. I mean, what we … As artists, one of the things, what we try to do, we are trying to capture people’s experiences. Whether they are locked in a congregate setting, whether they’re being taken away in a guardianship, whether the access is so bad that they can’t even get downstairs, you have all those things, and what an artist … What I believe artists in our community, in a disability community should be doing, is they should be capturing the people’s experiences, with photos like art, so that one might value … You want to place a value on that person so that people can see what another, that person that is in another life is experiencing.

Tom Olin:

You can’t make that connection, then it’s just … It’s whatever you do might be nice looking, might be okay, but you’re not changing things. I mean, I want art to be something that we can change into for something. Artists can do that. There’s just too many … The Civil Rights Movement … When the Civil Rights Movement started with King, and [inaudible 00:23:51], they had great buttons, they had things that they kind of came on to, the artists. They had poets that came up and say something. They had some academics behind them. The AIDS Movement, we had really good artists that kind of said things to people, that brought people together, and were kind of … It’s kind of funny.

Tom Olin:

We had Crip Camp, which was an amazing film that brought us together for a bit, that we could have that familiarity of people coming together, and I mean, I’ve been in congregated settings where groups of people bonded together, because they were in congregate settings and camps, even if it’s a camp or if it’s a school that people are in. Places like that, even on a commune, people are together, and those … That was a really nice thing about Crip Camp. You felt like that communal experience of people with disabilities coming together, and loving each other, and all that. But yeah, at the same time that that was happening, COVID was happening.

Ashley Inkumsah:

Mm-hmm (affirmative).

Tom Olin:

All that great experience of being together in that film, the other side of what was happening in reality is we were dying in these congregate settings that were the first thing, a lot of people dying were the nursing homes, up in the state of Washington. Then a lot of us said, “We should do something,” and it was like our big organization, APRIL, NCIL, and other organizations tried to get ahold of our representatives and Congress people, and it took weeks before they could come back to us. They had other priorities. People with disabilities were still at the bottom. Crip Camp, we thought we were … We went up to the top [inaudible 00:26:34] with everyone else, and then COVID hit, and we were realized that we were treated like we were people on the bottom, and that is still happening.

Ashley Inkumsah:

Absolutely.

Tom Olin:

Still happening.

Ashley Inkumsah:

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Ashley Inkumsah:

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Ashley Inkumsah:

Why do you think that organizing is a way for people to enact change especially in today’s day and age? How can people start to mobilize and organize to change the way that people with disabilities are viewed and neglected?

Tom Olin:

Well, it comes back to just old time organizing. That means, you get together with groups of people. You find it … It’s like if you wanted to … Let’s say something was happening in your neighborhood, in your community, which I want to use, because that’s … In your community is where your justice is going to happen nowadays, and so if that happens, and you talk to a friend, you talk to a friend and you say, “This is what I say.” If that friend says, “Oh, I agree with you. We should do something,” and you start with your friends. A lot of us have connections with other people in other organizations. Then once you have a couple of friends, you reach out to either other organizations, or other people. You keep close. You don’t want to give it all to an organization. You want to still keep it to yourselves and what you think is what is driving you at that point. If it is nothing, then it will turn out to be you’re the only one that wants it then.

Tom Olin:

But if you can get other people together, and that’s the whole thing is getting people together, and it’s not just … It’s easy to do a post, a Twitter, or something, Instapost, Instagram, and get a whole bunch of people behind that might say something, but have them come face-to-face to you, or a phone call that goes, that number comes down to something else. I think what’s really important for us now at this point, is to start, is just talk to each other again. We’ve forgotten how to talk to each other. Back in the movement when we were doing ADA, fighting for the ADA, we had phone trees. We would be talking to people. That is not happening, and I’ve seen people, good people post stuff on the internet, and that person … Because we’re talking right now. You notice my inflection. You know when I’m excited. You know when I’m not. You know when I’m even asking a question before it comes to you. That doesn’t happen on social media. That does not happen on the internet.

Tom Olin:

There are times when you will speak, and people will think that you’re saying something else, and if you say the wrong thing, that might be the last thing that you ever will hear from that person, or they will ever hear from you. I mean, it is just … There is something … If you talk to each other, that would probably never … You could have worked it out, or something. That’s where I think working … Organizing now is working with groups, working small, and finding people. I had a group that started with just myself and a person, but I said, “Hey, are you into this?” Let me see, it must be maybe three months ago.

Tom Olin:

Today, we have like 35 people. We have directors, and other people in independent living. We have three institutes on disability. We have economists. I mean, we have people that are just … We have a person in Canada. It’s all grown up just because we took a couple of us decided, okay, let’s do this. What can we do, and invite a couple of our friends, and it grew into something. But now we have something that we actually share with the White House, that we share with ACL. We share with FEMA. Things that it would have been hard to do with one person, and very important … Important enough that 35 other people say, “Hey, I want to be connected with this.” Organizing starts with just being in touch with another person.

Ashley Inkumsah:

Mm-hmm (affirmative). I love that you mentioned it could be either in-person or over the phone, because of course, there’s people with disabilities who can’t be on the frontline, who can’t meet up in person, so I think having that phone conversation, hearing each other’s voices is so also equally important to organizing.

Tom Olin:

The internet is really good in the sense that when I talk to a non-verbal person, then that is … Then I do it one-on-one. Also in other groups, if you know … That’s what’s so nice about Zooming is that you can put it in the chat room or whatever. I mean, you have people with all different kinds of disabilities, but in the end, you have to make sure … I mean, one of the things about even having a group, is that you have to keep on talking with those people in your group. You just can’t leave it all up to, oh, we’re just going to put it on paper, da, da, da, and okay, you have a Zoom.

Tom Olin:

Even though you have a lot of people together, you still need to reach out because of those people that are on our Zoom, there are people that want to say something, but for one reasons or another, don’t say something. If you really want to get, have people involved, and you do need that one, that’s when you then either text that person, or call that person, and say, “Hey, I didn’t see you last week, or how did you think about that Zoom? What did you think about what we’re going to be doing?”

Tom Olin:

But, you really need to get out there, because some of the disabilities … I mean, I work in the area with a lot of people that have psychosocial issues, and sometimes, it comes out during a conversation, and sometimes it won’t come out … I mean, their disability is so that they have anxiety or something and you need to talk to them a different way to get their input into a group. We’re talking everything about, except for the art of that we’re talking about. But today, trying to get our images, our art out there, is still a one-to-one thing in a sense that we need an audience, and there are just really good artists out there that … I mean, I just got done finding a young photographer … I call him young, he’s 28 years old. He’s young to me. But, to me, it’s that generation that I can be … I’m 70, 71, what year … Yeah, 71 years old, yeah, 71, and so I don’t need to do everything that I want to do.

Tom Olin:

I want to be able to be there for the people that want to do something, and I have enough contacts, have been around a lot, so I can just be an old elder. That’s kind of what I want, and I get to show my love that way. One of the things … It’s kind of funny. One of the new photographers that I’m working with, he’s also very much like Miles Horton who was a person, a civil rights person, who started the Highlander Center, and one of the things he said is you can’t be a revolutionary. You can’t want to change society if you don’t love people, and that’s the basic of it.

Tom Olin:

When you talk to another person, it’s that love that you give that person, and I always try to give any one new person unconditional love, meaning that I don’t need to trust you. It might be three strikes later that I might say, “Okay, maybe I shouldn’t” … But right off the bat, I’ll trust you and I really do that all my life, and it has worked well for me. In this time when we’re all kind of secluded and whatever, we need to have that kind of trust when we talk to other people. If you don’t have that trust when you’re out talking to the other people, or trying to organize, if you don’t … If you can’t have that trust, it won’t go anywhere. It will end up in a different world down the line. The whole thing is, is that when … We change the game when we all work together. It’s so amazing what working together does for our community.

Ashley Inkumsah:

Mm-hmm (affirmative), I agree.

Tom Olin:

I’m really enjoying being able to work with all generations. I think that’s very, very important for just our generations, because they’re … No matter what happens, our being in a disability community is something that is going to keep on going.

Ashley Inkumsah:

What lessons have you learned over all of these years that you’ve been organizing, and also as a photographer fighting for disability rights? What lessons have you learned along the way?

Tom Olin:

When you treat people as persons, and they come to respect you, they come to know you, there’s … I have a lot of great friends all over the US that I get to not only be friends with and stay at their houses, but I get to cook with them. I get to break bread with them, and we get to pass on stories, which is really, really good that you can do that and be able to do that because one of the things about photos and organizing is that you need to … Photos, you need people to photograph. You need actions, so I get to be called to do things.

Tom Olin:

In the early days, I remember once, I was so sad that I was … I was traveling to the place that was going to take me two hours, and it took me three hours, and I thought, oh, my God, the march is going to start, and I’m going to have to figure out where they’re out, and so I get up to the place where they’re going to start, and they’re all there. I said, “Oh, God, great,” and so I get my camera stuff out. I go out and I said, “Ah, I’m glad you didn’t start.” They said, “We couldn’t start without you because if we started without you, and you didn’t take any pictures, then what we did doesn’t happen.” [crosstalk 00:40:49]-

Ashley Inkumsah:

Mm-hmm (affirmative), they say … There’s a saying that people say, millennials say, pics or it didn’t happen. That’s a saying that’s very popular. There’s no pictures, it didn’t happen.

Tom Olin:

Exactly, exactly, and that was exactly what they, was in their minds. I felt really bad, but it worked out of course. But, it’s nice to be able to … I mean, right now, I’m working with people in Pennsylvania, and Colorado that I talk to every other day, or every day, every day. Yet, I’m in this broken down tour bus outside of Austin, Texas that doesn’t go anywhere. I don’t even have a vehicle to go anywhere. But, I’m all over the place, and being able to talk with friends, and do things with friends.

Ashley Inkumsah:

Mm-hmm (affirmative), what advice would you give to young people, the young people of today who are hoping to use art photography to enact change in the disability community? What would you tell them?

Tom Olin:

Find organizations that you can give your art to, and I say that almost … Art is something that in anything … Actually it’s just a personal thing that when you give something to another person, it does something. I used to give my photos free to organizations, and it has come back 10 fold just like the proverb. Now people, when they want to use my photos, they’ll call me and they want to pay me, because at times, I had given them something, and I still do. If an organization … It’s a big sliding scale.

Tom Olin:

If they can’t afford a photo on their walls, then shoot, for me, it’s better to have something there than not, and for those organizations that can not, that can afford, then they pay me a very nice price, and it’s … That means that I can give … If they give me a good price, I can give a good price to another person. It just works out really fine. I tell people, to artists, work with your friends. Work with the organizations. Become friends with those organizations. If they have something, be artsy with them, because at a time, they will hire you. It might be two years after they have some money, and they remember you. They remember how a nice person you were, and they will. It just comes back to you. You don’t have to plan on it. Just being nice has its rewards.

Ashley Inkumsah:

It sure does, absolutely.

Tom Olin:

I mean, and definitely, I mean, you have artists … Sometimes, you really have to get into where you’re at, and your art will reflect it. But as soon as you turn your art to try to help others, then it becomes something else. Then that’s where your art can really make a difference and look … I would tell anyone to look at the past artists. Look at the people that have changed the minds of people. Keith Haring, from the AIDS Movement is a wonderful example. There’s just some really good people out there, and I find it … Especially for the young. Push the artists. Push the older artists to start doing some art that makes a difference. Right now, there’s a lot of art out there with a lot of artists my age that I can’t understand that is what they’re seeing out there in the world, and they’re not trying to make a difference.

Tom Olin:

I don’t know what kind of difference they’re trying to make. Sometimes it works so academic in the world. I know WID right now, and some other organizations, were very much into what we can do with children, and it’s especially an institution that has … I say, “Hey, young artists, think about how you can display kids that have lost their lives behind locked doors, behind frosted windows. How can we show the rest of the world that they’re losing other people that could be friends of theirs behind locked doors?” I think the future is our young artists. I think they have, they can have, and they should have a lot of help from a lot of our organizations. Actually, anytime I sneak anywhere, I tell organizations to always have an art budget. In their annual budget, there should be a budget for art, so they can have it on their walls, so they can support artists, their cultural workers.

Tom Olin:

We should always support our cultural workers. It’s a very exciting time to be in right now. It always is because there is a lot of chaos out there, and it’s during those times of chaos, when not only we can grow, but society grows. We’re at that point, so what we do right now, is some … What we do individually, and what we do collectively, it’ll resound for years to come. This is the time. That’s why you hear people talking about infrastructure. It’s out there, but of course, the main society doesn’t think of infrastructure with us, but we need to have that input, and have that infrastructure to include us because we need to be included in the community, and that’s where we need to have that justice, disability justice to influence our community.

Ashley Inkumsah:

Absolutely. The thing about art, like you said, it resounds forever. Even when we are all gone from the world, our art will still be here, so it’s powerful for sure. Mm-hmm (affirmative), absolutely. Well, thank you so much once again. I had so much fun chatting with you. I’m so happy that we finally got to connect.

Tom Olin:

Me too.

Ashley Inkumsah:

I had such an amazing time chatting with Tom. His photographs truly help tell the most powerful stories and galvanize the disability community. It was great to learn how his own lived experiences kind of set him on this path of fighting for disability rights, and Tom’s work really does serve as a reminder of the importance of art in activism, and it was such a pleasure to learn from him, and to have this fruitful conversation. Thank you to Tom for chatting with me, and thank you for listening, watching, or reading today’s episode. You can find transcripts and American sign language interpretations for each and every episode of What’s Up WID on our website at http://www.wid.org/whats-up-wid. As per usual, our famous last words here on What’s Up WID, paraphrasing the words of one of our founders, Ed Roberts, we need to get out there and change the attitudes so we can build forward better. Thank you so much once again, and I will talk to you next time.

Illustration of road sign with the words “marriage” and “divorce” printed.

Marriage Penalty Prevents Marriage Equity for People with Disabilities

By Sarah Kim


You’ve probably heard of marriage equality or marriage equity, likely in the context of LGBTQ+ rights. But there’s another kind of marriage inequity affecting people with disabilities: the disability marriage penalty. In this context, “marriage penalty” refers to a series of Social Security rules that trigger reduction or complete loss of disability benefits for otherwise qualified individuals when they get married.

The disability marriage penalty punishes people with disabilities in the U.S. who get married by stripping them of disability benefits such as Social Security benefits and Medicaid.  The clause has remained a part of the benefits policy for years, affecting many thousands of people with disabilities. Consequently, marriage rates among Supplemental Security Income (SSI) recipients are half that of the general public. 

SSI is a needs-based program that is based on an individual’s income and assets. The SSI program is for people with disabilities including children and older adults who have limited income and resources. State programs can supplement federal SSI benefits. When the individual gets married, joint income and assets are evaluated when determining whether a person is still eligible for the benefits.

Due to this marriage penalty, the system has made it so that many people with disabilities cannot get married or start a family. This stems from longstanding institutionalized ableism that actively prevents people with disabilities from living long, fulfilling lives. Some disability rights advocates trace the marriage penalty back to the eugenics and institutionalization movements, beginning in the 19th century and continuing in popularity through the 1940s. These entrenched policies of discrimination included forced sterilization of disabled people and segregated disabled individuals from interacting with nondisabled people in the belief that they were preventing disabilities from spreading to offspring.

Although practices like the marriage penalty aren’t as overtly ableist as practices of the past, they still keep people with disabilities from accessing the same caliber of life, liberty, and the pursuit of happiness that their nondisabled counterparts have.

Why People with Disabilities Forgo Marriage or Resort to Divorce 

When deciding to offer disability benefits, the Social Security Administration assesses one’s income and assets. This can be a problem for married couples because they may be disqualified if their combined bank balance is greater than $3,000. Too often, these combined assets and incomes are too high to qualify for federal assistance. A common assumption is that a nondisabled partner would take care of their disabled spouse financially and medically, and that additional supports would not be necessary. This is not the case for many couples, and puts the disabled person at a disadvantage, leaving them completely dependent on their partner, which can also leave them more vulnerable to abuse, with no personal income to protect them.

For couples who both have disabilities, the impact is even greater. Married couples are allowed to have fewer assets than each party would have as individuals. After they marry, they’ll receive about 25 percent less in benefits than they did as two unmarried individuals. The assumption behind this is that the couple can live on less income together than as individuals.

However, many disability assistance programs — such as community-based services, home-care aides, and long-term care facilities — only accept Medicaid recipients. And the only way to qualify for Medicaid is to fall below certain income thresholds. This presents itself as a catch-22. Even if an individual can afford private health insurance, health care costs for people with disabilities are often much higher than for nondisabled people.

According to the U.S. Census, employees with disabilities earn on average 66 cents for every dollar earned by nondisabled peers, putting them at or below the poverty line. Paying for healthcare, housing, and the basic cost of living can be nearly impossible. So, for many individuals with disabilities, remaining unmarried is, unfortunately, their only way of survival.

Often, happily married individuals with disabilities resort to divorce simply to gain access to healthcare and benefits. In fact, according to OZY, between 2009 and 2019, nearly 1.1 million Americans with disabilities got divorced, compared to 593,000 who got married. Roughly twice as many people with disabilities got divorced than married.

However, even if an individual with a disability isn’t legally married, SSA can disqualify them for “holding out” as a married couple. If the federal agency finds out the individual is cohabitating with their partner and sharing living expenses, they can still lose their benefits, even if they’re not married.  

What the SSI Restoration Act is and How it Can Help 

Disability benefit regulations in the U.S. are outdated and inequitable. Most of the SSI eligibility rules have not been updated since President Nixon signed the Social Security Amendments into law in 1972. The amount of money recipients receive has also been stagnant, not accounting for inflation.

In June 2021, the Supplemental Security Income Restoration Act was introduced in the US House of Representatives by Representative Raul Grijalva (D-AZ), Representative Jan Schakowsky (D-IL), and Representative Elissa Slotkin (D-MI) and in the Senate by Senator Sherrod Brown (D-OH). 

This bill would modernize SSI benefit programs and improve the lives of nearly 8 million people with disabilities and seniors.

The SSI Restoration Act would:

  • Eliminate the disability marriage penalty by setting the SSI couple benefit rate to two times the individual rate,
  • Increase the asset cap for individuals from $2,000 to $10,000 and for couples from $3,000 to $20,000,
  • Increase the benefit rate to match the federal poverty line, adjust for inflation, and
  • Allow people with disabilities to work and earn up to $416 per month without their SSI being reduced based on their income. 

The time for updating SSI policies is long overdue, and this act has the potential to rectify a longstanding injustice. People with disabilities have been forced to choose between love and survival as a result of archaic policies. The bill has yet to be passed, but civilian engagement could tip the balance in its favor. 

Sarah Kim is a freelance writer for WID, journalist and content writer.

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What’s Up WID: Intersectionality Between Racism and Ableism Transcripts


Ashley Inkumsah:    Hello everyone. And welcome back to What’s Up WID: the World Institute on Disability Podcast, where we discuss what’s up in the disability community across the globe. On today’s episode, I’m super excited to share my very fruitful conversation about the intersectionality between racism and ableism with the wonderful Nikki Brown-Booker. Nikki is the program officer for the Disability Inclusion Fund over at Borealis Philanthropy. And she’s also a biracial woman of both Black and Filipino descent living with rheumatoid arthritis. We talked about Nikki’s experiences with respect to her identities as a woman of color with a disability and how the systems of racism and ableism operate together to undermine people of color with disabilities. And I hope that you enjoy our conversation.

    Thank you so much for joining me, Nikki. I am excited to have this much-needed conversation about the intersectionality between ableism and racism. And before we even dive into my questions, the first question that I always ask all of our guests is always, how are you doing today?

Nikki Brown-Booker:    I’m good. It’s a little bit of a cloudy day in the Bay Area, but it’s really nice. And I’m very excited to have this conversation.

Ashley Inkumsah:    Yes, me as well. So as a biracial woman of Black and Filipino descent, and also having a disability, how would you say that you have had to navigate the world in respect to those identities?

Nikki Brown-Booker:    Such an interesting question. You know, I feel like when it comes to navigating the world as a biracial person and a person with a disability, that often you’re asked to choose which identity you happen to be at any particular time or moment, which I find really challenging to have to do. I’m not just a person with a disability during any particular time or moment. I have multiple identities and I’m all of those identities all the time. So I think that that’s been one of the biggest challenges of having multiple identities that are really obvious to people. They’re obviously visible. Kind of feeling like I have to choose which one I’m being at any particular time. I also think that that’s not just something that happens in general.

I mean, it happens even within my own family structure, or even with like friends or at school. I have people ask me all the time, do you identify with one particular identity more than another? And I’m like no. No, I don’t. And it’s like why wouldn’t you even ask that question? Yeah. So, but it happens all the time, all the time. So I think that’s been one of the more challenging things about having a multiple identities. And also just like, when I’m in a particular group, say I’m hanging out with like a group of Filipino people or something, sometimes they’re like you don’t look Filipino. Are you really… Do you really belong? Right. So, and that happens in many different settings. Like do you really belong because you don’t either look a certain way? Or I’m not quite quite sure why you would identify as this or that. So that’s something that happens quite a bit.

Ashley Inkumsah:    Mm-hmm (affirmative). And have you felt pressure to have to prove yourself either way or the other into one identity?

Nikki Brown-Booker:    Yes. All the time. I do. I think that happens a lot. I think that happens more with kind of my ethnic identity than maybe with my disability.

Ashley Inkumsah:    Oh absolutely.

Nikki Brown-Booker:    Because my disability is really clear and obvious, but sometimes when… I remember this happening when I was in like middle school, being kind of by some of the other Black students and not feeling like I was really part of the group. Once, someone actually told me “You don’t really speak like a Black person. You’re not speaking in slang or like everyone else.” I’m like, well, my mom really taught me not to speak in a certain… with regular English and not to use a lot of slang. That’s just how I was brought up.

    And so I’ve had that experience and I’ve had that experience from the other side too, being Filipino and being mixed. I think a lot of Filipinos are kind of racist against Black people. And so there’s been some experiences there, where I would have to prove that I really was Filipino, that I had a Filipino mother, that I grew up with a very strong Filipino family. I mean, for me, growing up as a child, I spent more time with the Filipino side of my family than with the Black side of my family. Because my Black side of my family were from the South and Mississippi area. Whereas, all of my mother’s family literally lived within like two miles of my house. So I saw my Filipino relatives virtually every day. We were in school together, with my cousins and went to my grandmother’s house every Sunday for dinner. So..

Ashley Inkumsah:    Yeah. And how have you navigated all of these challenges that you’ve faced, fitting into these identities and having to feel like you have to choose between one or the other? How have you been able to navigate that and turn that kind of on its head?

Nikki Brown-Booker:    Well, I feel like I pushed back against people about that all the time. Having people ask me to choose or wanting me to choose or act a certain way, I act the way I am and who I am. And if they don’t like it, then they don’t like it. I’m not going to change or try and be someone that I’m not, or be different than who I am. And also, not deny a part of me because someone else or some group wants me to do that. So I kind of push back against that. People ask me what my nationality is or ethnicity is. I always say I’m Black and Filipino. They asked me about my disability. I’m pretty open about answering questions about that. So, I’ve never denied any part of who I am, even when people have wanted me to.

Ashley Inkumsah:    Yeah. I totally agree. I mean, there’s no one way to be a Black person. There is no one way to be a Filipino person. And there is no one way to be a person with a disability. And it’s really disconcerting that people feel that people who are multiply marginalized have to even be a monolith, but I think it’s really commendable and admirable that you have that self-assuredness and you refuse to choose and you refuse to let other people define who you are. How would you say that the systems of racism and ableism are interconnected?

Nikki Brown-Booker:    Good question. Well, I feel like they’re definitely very connected to each other. I mean, anything that makes you feel less than, or an other, and any type of discrimination really is a problem. And I feel like when you have multiple ethnic identities along with a disability… But sometimes I feel like when you’re talking about cross movement to work, I think a lot of times people in a particular movement haven’t really brought in people with disabilities as much. Or they see the movement as separate, but they really aren’t separate. There’s ableism that exists within the Black community, the Filipino community, just other types of communities. Ableism to me is something that is kind of universal in a way, across communities, and no one’s taught how not to be ableist. I think people are more taught how to be ableist as they’re growing up.

    So I feel like that exists in almost all communities. And then, intersecting that with racism, so you would have this… For me, I feel like I’m always having to prove that I’m smart. I’m always having to prove that I can speak intelligently or that I can be whatever I am or who I am or what I want to be. And because I’m always rubbing up against racist ideas and white supremacist ideas and ableist ideas that somehow I’m not as good as someone else because of the color of my skin or my physical disability. I don’t know if that answers your question but…

Ashley Inkumsah:    Yes. That did answer my question very comprehensively. This time, last year, we were really having this conversation. We were having a so-called reckoning with race, and we were having a lot of these conversations about racial justice. Why do you think that the racial justice conversation has to include people with disabilities?

Nikki Brown-Booker:    Well, I think it absolutely has to include people with disabilities because white supremacy is everywhere. And white supremacy says that you’re less than if you are not, quote unquote, what they would think as normal, whatever that looks like or is. I’m not quite sure what that’s supposed to be. And so I feel like where racial justice movement really needs to bring people with disabilities, really active into that movement, because it’s the only way that we’re going to win, is if we work together. And fighting those ideas of white supremacy and fighting those ideas of ableism and racism that… And also, I feel like those movements really need to also address their own ableist ideas and really work through those so that people with disabilities really feel understood and included within those movements. And like I said, the only way we win is if we work together.

Ashley Inkumsah:    Mm-hmm (affirmative). Absolutely. I think definitely it has to be said that racism creates disability in a lot of cases, right? That’s why Black and brown people account for the most disabled people because in a lot of cases racism creates… Like one system really can’t exist without the other. And if we look back in history, some of the earliest traces of ableism occurred during slavery time where the concept of phrenology was really pervasive. The idea that the slaves were born with inferior skulls, like the composition of their skulls is why Black slaves were inferior to whites. The way that Black people were characterized as being hysterical and biologically predisposed to being uncivilized and this was what the notion was. The stench of that, the remnants of it is still very much pervasive. And the vestiges of it is still very much here to stay and yeah, like one system cannot exist without another. As long as ableism exists, racism will always exist. And yeah, definitely those societal barriers, only continue to create disability, which is why we all need to come together to fight for each other really. And-

Nikki Brown-Booker:    Absolutely.

Ashley Inkumsah:    How do you think that people with disabilities from different intersections can come together to fight for disability justice? How can that start to happen?

Nikki Brown-Booker:    Well, I think that just having a conversation about it, I think is really important. I feel like that conversation is starting to be had, but I also really felt like, we need to have more communication together and with each other to really see where the commonalities in our movements are. And also people with disabilities can be racist, and people who are a person of color could be ableist. So, until we actually start having the conversations about what that looks like, what that feels like, and really trying to bring some understanding to each other, then we’re always going to be fighting against each other. Like I said, we have to work together to win. And I feel like really actually having sometimes hard, challenging conversations with each other about those things is really, for me, it’s so important and really foundational to the work that needs to be done. And I feel like when we start having those conversations and start having like understandings and meanings behind what that feels like for each other, then we can really come together and actually start working together.

[intermission]

Ashley Inkumsah:    WID has recently relaunched our new and improved blog, where we tackle current events, affecting people with disabilities, from the Free Britney movement, to why people with disabilities don’t want to go back to normal, to disabled TikTok creators that you need to be following. There is no shortage of content. So visit our website today at http://www.wid.org/news/blog, to catch up on our latest blog posts.

[end of intermission]

Ashley Inkumsah:    From a perspective of a business, why is it important that companies and businesses and corporations that their diversity and inclusion initiatives include people with disabilities? Because a lot of times, people disabilities are left behind when people think of diversity and inclusion. Why is that so important that people disabilities are included?

Nikki Brown-Booker:    Well, it’s hugely important because I mean, there’s a couple of reasons why I think it’s important. One, if you have people with disabilities who are actually working for you and in your business, then it’s going to force you to actually really think about access within your own companies and making sure that all your workers have equal access to all the things that they need. And you don’t really get that until you have someone who’s working there who might need something as minor as having their computer put up on a stand so it’s at the right eye level, right? We’re not talking like we have to do major, expensive changes or anything. Sometimes access is very, very minimal. I use two pencils for typing that’s a 30 cents solution, right? For access.

    So I think for companies, having people that are people with disabilities working there, it makes people feel included. It’s also they’re really missing out on really good skills and opportunities from people, if they’re not really incorporating people with disabilities into their workforce. I mean, people with disabilities have a lot to offer the community and also have a lot to offer businesses. And it’s like you don’t know that you’re missing out, sometimes you don’t know what you don’t know. And I really feel like businesses really need to think about really bringing more people into the community, into their work. And that’s one of the ways that we combat ableism.

Ashley Inkumsah:    Absolutely. I totally agree with you. And, personally, I would love to hear more about your work at the Disability Inclusion Fund team at Borealis. Can you tell us a little bit about what you do and how you got involved in the philanthropy space?

Nikki Brown-Booker:    Sure. Before I started in philanthropy, I was an executive director at an organization in Berkeley called Easy Does It Emergency Services. So I was on the other side of writing grants and trying to get funding for my organization and understand the challenges and the struggles of writing grants and trying to get money. And I was really interested in learning more about the other side of that picture and learning more about philanthropy. So when this position opened up, I was really excited and applied for it. And I think one thing that’s really unique about Borealis philanthropy, or as an organization in particular, is that they really try to hire people who have lived experiences of the communities that they’re serving, that they’re basically giving to. And so I think that was one of the things that attracted them to me is that I’ve been an advocate in the disability community for probably well over 20 years and really understood the community, have lots of lived experiences.

    So, and I use that in my work for the fund on a daily basis. I feel like a lot of the organizations that we’ve given money to, I understand their work that they’re doing. I, either, understand it from a perspective of… Understanding what those services look like because either I have received services or I’ve worked to give those types of services. And also just understanding the policies behind different types of work and understand advocacy and have done lots of organizing on disability issues. So I think that really made me well-suited to work in philanthropy because philanthropy, in general, doesn’t really understand the disability community and the needs that they have. So I feel like one of our goals of the fund is really to teach philanthropy about disability and for also the disability community to learn more about philanthropy and how that works.

Ashley Inkumsah:    Mm-hmm (affirmative). Yes. And I want to circle back a little bit because we talked a lot about your cultural identities, but I want to discuss more about how it was like for you growing up with a disability and what were some of your experiences and what support systems did you have? So if you could share that with us, that would be great.

Nikki Brown-Booker:    Sure. So I come from a really big family, I’m the youngest of eight kids. Yeah. And both my parents are also come from big families. So my mom is the oldest of nine kids. And I think my dad was the second youngest of eight kids. So, I grew up in a really big family…I have six brothers and one sister. So I really think that it really shaped my experiences as a person with a disability. One, I know for a lot of people with disabilities, their families tend to be really over-protective of them. I think my family was kind of a little bit of the opposite. They’re always like…Brothers were like, you can do anything that you want to do, just go and do it. And always really supportive.

    As a young child [inaudible 00:24:20] was part in special ed. I was in a special classroom until I was mainstreamed into a regular classroom. And I feel like as a young child with my particular disability… I have rheumatoid arthritis so a juvenile form. I spent a lot of time in hospitals, a lot of time, doing things like physical therapy and I’ve had many, many surgeries as a kid. So I think that really shaped my understanding of what disability really means. But I think coming from a big family that was really supportive of who I am and really went a long way. I mean, I felt like my mother and grandmother were really strong women and they had to take care of a lot of kids. They have a lot of responsibilities and were really, really hard workers.

    My parents owned restaurants when I was growing up. My father was a chef. And if you’ve ever worked in the restaurant business there, you have to be extremely hard workers. And so I really feel like part of my work ethic came from my family and my parents in particular. And also my parents really supported me in going after whatever I wanted and what I believed in. And so that was something that I grew up with. And my dad was in a union. My mom was a domestic worker, so I really… And those are issues that are really important to me. So, I feel like that really had an influence on my love and desire for social justice.

Ashley Inkumsah:    Mm-hmm (affirmative). That is wonderful that you had such an amazing support system. That’s amazing. And based on your own experiences, what advice would you offer to other people with disabilities who come from multiply marginalized backgrounds? What would you say to them?

Nikki Brown-Booker:    I would say to them don’t let people push you around. Don’t choose who you are in any particular day or time. Be who you are, be proud of who you are, and really stand up to that type of marginalization. And everybody has different skills, different challenges, different things that they’re good at. Find what you’re good at. Find the thing that you love and figure out how your disability or your ethnicity really enhances those things and use those things in your life as opposed to trying to fight against them.

Ashley Inkumsah:    Mm-hmm (affirmative). That’s exactly what you’re doing. And it’s amazing. It really is marvelous for sure. Where can our audience keep up with the Disability Inclusion Fund work that you’re doing at Borealis? Where can they find more information?

Nikki Brown-Booker:    I think you can find information on the Borealis website and sign up to be on the mailing list for the Disability Inclusion Fund, which you can do on the website also. We’re doing lots of exciting things. We have our Request For Proposal out right now. We’ll be doing more grant-making next year. And I think one thing that I’m really excited about for us in the future, is we’re going to be doing a lot of capacity building for, not only for our grantees, but also just like thinking about things that the community needs and providing some more capacity building around those types of topics.

Ashley Inkumsah:    That is fantastic. Well, it was so wonderful speaking with you. Is there anything that I haven’t asked you that you would want to tell to our audience?

Nikki Brown-Booker:    I don’t know. I can’t think of anything. I mean, I guess my last thing I would say is one of the things for me that’s been really important that I’ve learned as a person with a disability and a person of color is that people are always going to try and knock you down or not even knock you down, but just make you feel like you’re less than. And just remember that you’re not. That you have as every right to be part of the world and society as anyone else and you make your presence known.

Ashley Inkumsah:    That is absolutely awesome advice. Well, thank you once again for joining me. I had so much fun having this conversation with you today.

Nikki Brown-Booker:    Thank you!

Ashley Inkumsah:    It was so great to have this conversation about racism and ableism with someone who exists within several multiply marginalized identities. Her self-assuredness, and willingness to proudly claim all of her identities and tear down the systems of racism and ableism is the absolute embodiment of disability justice. Now, as always, you can find ASL interpretations and transcripts for this episode and all of our past episodes at http://www.wid.org/whats-up-WID. And if you enjoyed today’s episode, don’t forget to share it. Now, thank you so, so much for listening to, watching or reading today’s episode. And in our famous last words here on What’s Up WID, to paraphrase one of our founders Ed Roberts, we need to get out there and change the old attitudes so we can build for better. Thank you so much. And I’ll talk to you next time.

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What’s Up WID: How COVID-19 Transformed the Lives of People with Disabilities Transcripts

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Ashley Inkumsah:

Hello everyone, and welcome back to What’s Up WID, the World Institute on Disability podcast, where we discuss what’s up in the disability community with activists and advocates across the globe. So today, I am so happy to share with you all my conversation with Damian Gregory. Damian is the founder of an organization based out of South Florida, called Nothing about us, without us. Damian also has cerebral palsy, and the work his organization does revolves around advocating, consulting and educating to ensure the inclusion of people with disabilities. So a couple of weeks ago, Damian and I had a conversation about how the COVID-19 pandemic really transformed the lives of people with disabilities, and how we can take what we’ve learned from this pandemic to create a society that is more inclusive of people with disabilities. It was an absolutely wonderful conversation, and Damian is really and truly a class act. So grab yourself a snack and I hope you enjoy today’s episode.

Ashley Inkumsah:

I’m so happy to have you as a guest today, to have a conversation about the ramifications of COVID for people with disabilities and the dangers of returning to a so-called, quote unquote normal. My first question for all of our guests is always, how are you doing today?

Damian Gregory:

I’m doing pretty good. I mean, today has been a great day. Yesterday was very eventful, because of the anniversary of the Americans with Disabilities Act. And I chaired a meeting yesterday which was only my first meeting in person since COVID, and so there were a few apprehensions just because I’ve known all my board members for a long time but it’s just being in a physical space post COVID with more than five people is a little bit jarring and a little bit daunting, but it was also nice to be in the same room as people that I’ve seen in Zoom boxes for months. So, it was kind of a mixed blessing day. Today is kind of a respite from that kind of activity. It’s been a day, mostly at home answering emails because I work from home anyways. So it’s a nice respite from what was going on yesterday, but it’s been a good day. We’ve been blessed with thunderstorm, which is always awesome in Florida, particularly, this time of year, we have thunderstorm pretty much every afternoon.

Ashley Inkumsah:

Yep. I was going to say, yeah, this time of year in Florida, the weather is insane.

Damian Gregory:

Yeah. It is.

Ashley Inkumsah:

Just glad that you’re safe and sound. That’s all that matters.

Damian Gregory:

Yes. And I feel snug and happy. So,

Ashley Inkumsah:

Mm-hmm (affirmative). All good, thanks. That is wonderful to hear. So far listeners or audience members who are not disabled, or may not know what it’s like living with a disability, or even if they do have a disability, every disability is obviously very different. So in context of your disability, I want you to explain some of the challenges that you face navigating the world prior to COVID. How was that like for you?

Damian Gregory:

Well, I have been very blessed. I don’t want to start way back. I’m an old man down, middle aged. I don’t want to start way back on a hot Spring day in 1974 when I was born. I’ll skip to the interesting parts. For me, navigating my way through society and the world has always been interesting and always a challenge, but always something that I’ve welcomed. COVID has been a different kind of creature altogether, because all of the things that you knew and all of the things that were set up to make your life run and function in a certain way, all of a sudden have been kind of up ended and turned upside down. So and that has been the interesting thing about COVID.

Damian Gregory:

And I’ve found it interesting that, I think as people with disabilities, we learned kind of have to go with the flow a lot of the time because you could plan your day perfectly, and then you use paratransit, let’s say. And your ride doesn’t show up, and all of a sudden the meaning that was so important that you prepared for, for months, doesn’t go according to plan, or you arrive late or whatever. Or you end up going to a restaurant, and then all of a sudden, whoops, you didn’t anticipate, now having to check whether there was a way for you to get in comfortably if I have a wheelchair. And then all of a sudden the meeting that was supposed to be a business meeting or a date turns into something else, and that becomes all about disability.

Damian Gregory:

And so people with disabilities have had to roll with it for quite some time in big and small ways just to cope. So whether that’s something as simple as your personal care attendant not showing up because they had a flat tire, and that has a cascading domino effect on your day, that’s just a normal course of business for people who rely on others in order to get through their day. So, I mean, it’s been interesting watching people that are neuro-typical lament all of the inconveniences that, in my mind are minor, when you consider all the things that people with disabilities go through every day, on a regular basis, sometimes two and three events in a day. And I say that not as a voice for anything, I say that as just a reality of what it’s like to live, work and be in a space when you’re a person with a disability.

Ashley Inkumsah:

And how would you say that changed? When COVID happened, how did you begin to navigate the world in the COVID society and in what ways was the world may be even more accessible to you?

Damian Gregory:

Well, I’ll tell you one way that it changed, that was a little bit unexpected. Way back in 2014, I moved back into my family home with my mother and my grandmother who was ailing at the time with Alzheimer’s disease, because we decided that we would keep her at home throughout the duration of her illness, because sending her to a nursing home was just not a viable option. That’s not how we roll in my family. And one of the decisions that we all made was that we were going to do what we could as a village to take care of her. And what that meant in my case was, I wasn’t able to do a lot of the physical things because of my physical limitations. I have cerebral palsy, and so I use a wheelchair pretty much a 100% of the time. And so what we decided to do was, I couldn’t do the physical things but I could do the supervision certainly for her home health, et-cetera. Well, she passed a couple a years ago, in 2017, almost what now, four years ago.

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

And I decided that, I didn’t mind the experience of being at home, because I was with my twin brother, also has a disability. And it was just comfortable because we had been always a very close family and we were always ones that people kind of looked out for and took care of. Well, it was nice to kind of return the favor now. So that’s what I decided to do. So fast forward to 2020, we had set things up very much where, I have to tell you that for about a year and a half prior to COVID, I’d started my business, and we had set up all the things so that my home was completely accessible business wise, and I had a personal care person who came in and did cleaning and assisted with making sure that my clothes were all together and all of that.

Damian Gregory:

Well, when the pandemic hit and we heard about how contagious it was and the fact that the person that was providing personal care would be, basically we decided to go on lock down pretty early. But we knew that that was not an option for the person that provided personal care for us. Well, what that meant was we decided that we would tell him that for the immediate future, we will not be using his services. We gave him a little [inaudible 00:10:50], so he had paid for, I think, I want to say three months into the pandemic, because we had no idea at that time what the pandemic would look like. And then eventually he left. Well, what that meant was a lot of the things that I took for granted, the ease of things with having somebody dedicated to do personal care and do laundry and do the housework stuff, all of a sudden that kind of got a little bit unorganized.

Damian Gregory:

So it took a while to get used to the new normal. So that was a challenge, but then what was interesting was so many things became more accessible in a way that we did not expect. Like my brother has worked at Florida International University now for about 10 years. And one of the challenges that he has always had is how to navigate the physical space of the university. Like if he needs somebody to open a door or do something like that, it was always a challenge. And would you be asking students and now with all of that work. Well in a still COVID space, you’re comfortable, you’re at home, you’re in your environment where if you need somebody to open door, you just ask Alexa, hey, Alexa call home and he call home, and then somebody does something as simple as opening a door for you.

Damian Gregory:

For him even, managing, navigating through the lunch area was always a challenge because there are tons of students there and it’s like, would I ended up wearing some of my lunch, well, that doesn’t happen at home. I mean, certainly you miss the personal interaction, but there are advantages to it. As far as work goes in the COVID space, it’s been an interesting pivot for me because a lot of what my company does is education and teaching people, usually small groups of adult learners about the disability experience. Oh, well during COVID, we had to go virtual and go to Zoom. And so you do some of that intimacy that being in a classroom, we’ll say 10 people gives you, but you gain something else in that you learn how to connect with audiences in a different way.

Ashley Inkumsah:

Right.

Damian Gregory:

And it took a while to get there, but I think we’re in a space now where families feel comfortable doing the classes that I teach. On Zoom, it’s not always as connected as I’d like because when they are looking at in-portrait in a gallery view at all the faces, it’s hard to know whether you’re connecting or not connecting, whether somebody is looking at their phone or paying attention to what you’re saying, but it is something that is a new skill. And I’m all for learning new skills.

Ashley Inkumsah:

Mm-hmm (affirmative). Absolutely, I think we’ve all had to learn quite a few new skills in this past year and a half. And yeah, definitely working from home has definitely been something that has actually shown in a lot of businesses. It’s increased the productivity in a lot of businesses, but why, in your opinion especially as a CEO, I want to hear your point of view. Why do you think that working from home is something that should continue for people with disabilities?

Damian Gregory:

Well, I mean, it removes a lot of the barriers that I don’t think a lot of people think of, particularly folks in the work world. Some of those barriers include, if you have a physical disability and you’re not able to do activities of daily living. And I’m going to break that down a little bit because sometimes when you say activities of daily living, people don’t really understand what you mean. If you need help to brush your teeth and go to the bathroom and take a shower and get dressed and do all the things that you need to do in order to even begin your workday, and that is compromised in some way, be it a personal character that doesn’t show up or is late, or they’re caught with another client, or has something personal to do, that means that everything that you need to get rolling has been compromised in some way.

Damian Gregory:

So I mean, that barrier is removed as a Zoom user, your office is your home. So all you need is a camera and a phone and you could do business just as efficiently without going through those things. Then it depends how far your commute is from where you work, from home to work. I mean, often for people with disabilities who don’t drive, that is a huge challenge. How are you going to get from home to work and be on time. If you take fire transit or special transportation, it’s a shared ride service. So there’s a high percentage no matter where you live in the country, there’s a high percentage chance that you will be late or harried or both, just to get into the office. And that is even before the workday has been gone.

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

And then if you need any sort of assistance, yeah, in terms of a voice to the bathroom or toileting or any of those things, how does that work? How do you navigate that in a world where you’re expected to function completely independently? You can’t ask your supervisor to help you go into the bathroom. That’s just not doable.

Ashley Inkumsah:

No.

Damian Gregory:

I mean, and that’s a real concern for a lot of people who have physical limitations and have dexterity issues. So, I mean, for all of those reasons, it is good to work at home. It’s also good to work at home because of not having to reverse all the processes that I explained earlier, because when you’re done with your work day, if you don’t drive, you need to take paratransit back home. And often for lots of people with disabilities, physical disabilities specifically, that means spending more time than you would if you were driving in your car alone to get back home.

Damian Gregory:

So, I mean, and we all have only 24 hours in a day. Right? And it is exhausting to just do all the things that we take for granted just in our regular day. But when you are a person with a disability, you have layers often of complications. So for all of those reasons, it’s really good to stay at home. Plus frankly, just the ease of your environment. Being able to do things that sometimes people don’t think about. Like, I have psychotic nerve issues and I have back pain issues. And for me being able to take 20 minutes out of the day to take a stretch break or relaxation break, even if I add that 20 minutes on later, makes all the difference in the world and reduces my fatigue a great deal.

Ashley Inkumsah:

Yes. It sure does.

Damian Gregory:

You know?

Ashley Inkumsah:

Yeah. It’s unfortunate now that so many people with disabilities are now being asked to come back to work and those accommodations are really being taken away. It’s very unfortunate. And as so many people are now echoing the sentiment of going back to normal, what are some of your fears that you have of so-called going back to normal?

Damian Gregory:

Well, it depends what normal will look like for you because some businesses have decided that they will do a hybrid normal, which I don’t think anybody understands fully what that means yet. I don’t think they understand what it means completely, to be honest. Well, one of the fears is that all of the gains that we have made by realizing that you don’t have to be in a physical space to feel connected with people, I fear that that will go away and people will go back to cubicle veil as I call it, because that is the way the work world has always worked. And like I explained, I mean, for a lot of people with physical challenges, it’s something that we have worked around and made work but it’s not always the most convenient and efficient way to function.

Damian Gregory:

I have to say that I am a huge proponent though of people with disabilities being integrated into work culture, if not into the same physical space because I think that goes a long way towards creating diversity and inclusion. Because so often people with disabilities are excluded from the social aspects of life, whether that’s work life or social life, because what do your coworkers do after typical day, they go to a restaurant to a bar or-

Ashley Inkumsah:

Happy Hour.

Damian Gregory:

… hang out or whatever. And typically those with disabilities are excluded from that part of it.

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

And so I’m a little leery of touting only the positives of being away and being in your own virtual space, because I fear that ultimately it’ll lead to more isolation if the people with disabilities are only working remotely because it’s easier.

Damian Gregory:

So I think there has to be a way to create inclusion that doesn’t demand you being in a physical space. And one of the things that’s been really cool is, I’ve gone to a lot of virtual happy hours in the last 18 months. And even I’ve gone to applause our high school reunion, and then college reunion via Zoom. And what was interesting about that was, I just didn’t think that it was something that was even practical or doable, but it worked.

Ashley Inkumsah:

Yeah.

Damian Gregory:

We sat there, we all said, okay, we’re going to get whatever drink of choice you want. And we toasted each other because it’s not about the what you drink and what you eat, it’s more about making the collection with other humans.

Ashley Inkumsah:

Mm-hmm (affirmative). Yep.

Damian Gregory:

So if you think about it, when you go to a restaurant and ask, did you have a good time at dinner? You’re really not talking about food. You’re talking about the company, and the feeling that you got as you left.

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

And I mean, unless the food is spectacular and never had that particular entree before, you’re not likely to remember the food, unless you’re a foodie like me. I remember specifics of, oh, the steak was undercooked or whatever. But generally, most people don’t remember that. They remember the conversation you had, or the way you felt, or even if the service was bad and you guys made a joke about it, you remember those details.

Ashley Inkumsah:

Absolutely.

Damian Gregory:

So, I mean, you’re able to do that in a virtual space and still be included without being physically beside each other. So I think it’s going to be an interesting thing to see what it shakes out to be this new post-COVID work world that we all are talking about.

Ashley Inkumsah:

Yeah. I think we’ve all learned so many lessons and we’ve learned that so many things could work that we previously had no idea about. And yeah, I think it’s about building forward better. It’s not about going back. It’s about building forward and taking what we’ve learned and seeing how we can implement that into our society for sure.

Damian Gregory:

And realizing that it doesn’t all have to be one way. Right?

Ashley Inkumsah:

Yep.

Damian Gregory:

I think one of the challenges that a lot of bosses are having is, they’re accustomed to being the boss and supervising 20 employees and seeing them all out there by their computers. And they feel like if they’re not able to watch them as they type and as they’re on the phone, then it’s not work. Well the reality is, you don’t know what they’re doing on their computer and you don’t know who they’re talking to. So, I mean, what difference does it make whether somebody does the job until five o’clock or they take an hour in the day to go pickup their son or daughter, or have a long lunch, or skip lunch altogether because they started early at 7:00.

Damian Gregory:

Well, one of the things that this pandemic has taught us is we need to be flexible. And flexibility is a skill that, like I mentioned before, people with disabilities have always had trouble with. I mean, it’s not something that is new to us. And people with disabilities are, as a rule, very able to deal with whatever ebbs and flows life brings.

Ashley Inkumsah:

Absolutely. And it shouldn’t be that way though. I said that on our last episode of our podcast that, it really shouldn’t be that way. People with disabilities should live in a world where they don’t have to be so resourceful and have the gumption to come up with a way to navigate the world. The world should be accessible already. But unfortunately, despite the ADA recently having turned 31, we still have a long ways to go for disability rights.

Ashley Inkumsah:

Can’t get enough of What’s Up WID? Great news, we’ve recently welcomed a new addition to our What’s Up WID franchise, our monthly newsletter. Our What’s Up WID newsletter highlights our latest blog posts, podcast episodes, videos and news media features every single month. To sign up visit our website @www.wid.org and click on sign up for email updates from WID, located on the left and subscribe to our monthly newsletter so you never miss out on what’s up with WID. What are some changes that you would like to see made in terms of our society in the way that it addresses people with disabilities?

Damian Gregory:

Well, I think people with disabilities are still viewed more as patients rather than members of society. We’re viewed very much on the medical model like we are to be fixed, or even to be revered or admired because of the challenges that we’ve come through. What I would like to see is people just realizing that disability is such a normal part of life, that if you live long enough and you experience things long enough, you will end up being a person with a disability, whether permanently or temporarily. So I mean, while what I do sometimes is something to be admired, it’s not because of my disability. It’s because of my character and who I am as a person. Now sure my physical limitations are a part of that, but that’s not the only part. It’s a mixture of many things.

Ashley Inkumsah:

And I want to pivot a little bit and I want you to talk a little bit more about Nothing About Us Without Us. I want to know how did it come to be and what projects you are currently working on within your organization?

Damian Gregory:

What we do at Nothing About Us Without Us is we do education. So as part of that mandate, I work with various nonprofits that named Miami, Fort Lauderdale area to educate. Typically, it’s people that are non-disabled on issues of disability. So whether that’s a sensitivity training as to what it’s like to be a person with a disability, we do experiential exercises where I would come up with an exercise about navigating your workspace as a wheelchair user, or somebody who’s blind, or somebody who is had other challenges to kind of let them experience even for a moment the things that they take for granted as being non-disabled.

Damian Gregory:

So I do that, and then I do some teaching at non-profits on the disability experience as well. What was it like before the ADA? What did that mean? I grew up in a time, because I’m middle-aged now, where the ADA was not something that we took for granted at all. And so the going to a restaurant or going to even school, you had to find out before you went to school, before the school year started if you switched, whether the school was accessible, whether there’d be bathrooms that you could use, whether in the cafeteria, how lunch would work, you’d have to figure all of that stuff out. Now, typically not that all architecture barriers have been removed. I graduated high school in ’93, so many of the barriers that existed even at my high school have gone away. It doesn’t mean that all the architectural barriers are gone but a great many of them.

Damian Gregory:

I think, now the biggest challenge that we have to face is the attitudinal barriers that come with a group of people that are millions of people strong, who now are expecting acceptance and inclusion, and will not take no for an answer. And a society that has been generally leaning towards a more medical model of disability with this idea of people with disabilities being pretty much taken care of and not having to work or do any of the things that this generation of folks says, yes we want to work, yes we want to date, yes we want to have sex, yes we want a life, yes we need representation in media, yes. We want inclusion and not only as a vague word, but we want it as something that is an active part of our existence and we want it everywhere and we want it now and we don’t want it over time and we don’t want it incrementally.

Damian Gregory:

And we don’t want it to be given to us grudgingly, we’re here to take it. And that’s where we are now in terms of the disability rights movement. And it’s fascinating because I mentioned that I’m middle age. One of the things that concerns me is part of the thing that I think happened with my generation and those that are in their late 30s, early 40s and beyond is, we had the fight first off, so we appreciated it a lot more. For example, I was always a student of [Metnerd 00:35:22]. I always believed in being a part of government whether that’s student government or big boy government, as I call it. But I ran for office in middle school and in high school and I won all three races that I ran in. And what that did for me was it created confidence because I felt like I was accepted. And my peers really thought that I had something to contribute. But what it also did was, it made me realize that things happen step by step.

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

And what I’ve noticed in the younger generation, and I’m going to sound like an old man who’s saying kids get off my lawn now. What that does is a lot of the things that this generation wants and rightfully deserves, they don’t have to fight for in the same way that we did. And what that does is it creates a sense of entitlement but it also creates a problem where… When you have to fight for something and it’s hard fought and some days you will be broken by people’s ignorance and just you can’t believe that you’re having such difficulty explaining why you need an accessible bathroom, or why you need a note taker in your advanced English class. Like I had to explain to my high school teacher, that is something that this generation, because they don’t have to fight for it, there is a sense of apathy about it just being available. And so I watch a lot of news because I’m a news junkie, and the first half of my professional career I was actually a journalist.

Ashley Inkumsah:

Oh, wow.

Damian Gregory:

Yeah. That was a lifetime ago.

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

But what that does is you realize that there are so many things that if we don’t keep fighting for them and keep renewing our desire to engage in, and they go away very easily. I look at the voting rights work that people are fighting for in many States right now, and if anything that experience has underscored to me that the Americans with Disabilities Act may exist and may be codified into law. But unless we keep pushing the envelope as to what we need, like making places accessible for voters, like being involved in a drop box file so that if your county had 20 drop boxes and now it’s being reduced to 10, and you have to take public transportation just drop your ballot off, that you’re included in that conversation. The civil protections that we take for granted and that we have come to expect as people with disabilities, all of those things are easily taken away, and that is a little bit scary to me. It’s more than a little bit scary, it’s very scary.

Ashley Inkumsah:

Mm-hmm (affirmative). Yeah. I think a lot about it. I’ve been thinking a lot about the work. I think just last week, it’s been a year since John Lewis’s death, and CT Vivian as well. And I think about how the life that we live has been built on the work that they’ve done-

Damian Gregory:

Yeah.

Ashley Inkumsah:

… and how relentless they were.

Damian Gregory:

And we take it for granted.

Ashley Inkumsah:

We do. It’s easy because we were born into it as millennials. I’m speaking from the perspective of a millennial, we were born into it. We didn’t have to fight for it the way that they did. So, yeah. It’s easy to take it for granted.

Damian Gregory:

And it’s the same principle as what I’m saying about the ADA. I mean, when the law is there, whether it’s implemented to its highest degree or fullest degree, or not, when the law is there, you kind of think that it’ll always be there. Well, it doesn’t always have to be there because there are always people that have reasons why this part of the law or that part of the law isn’t to their liking, whether it’s people that have business interests that say, “Oh, it takes too long to get businesses passed and it’s hurting businesses to have to have all these accessibility features.” Or whether it’s polling places that are not accessible that say, “Look, why do we need so many accessible places, because there aren’t that many people who vote historically.” All of those things are easy to take away. And I am a double minority. So I’m a person of color, and I’m a person with a disability. And there’s a lot of things that could be said about intersectionality and all of that which I won’t get into at this point.

Damian Gregory:

But what I will say is that there are so many parallels between the Black experience and the disabled experience. And one of the wonderful things about the movie, Crip Camp that resonated a lot with me was the whole sit-in thing where said, “Oh, they formed coalitions with different groups and the Black panthers were involved.” Et-cetera. I don’t know if you’ve seen Crip Camp, but-

Ashley Inkumsah:

Yes. I have.

Damian Gregory:

… if you haven’t, I recommend it highly.

Ashley Inkumsah:

It’s an amazing movie.

Damian Gregory:

Yeah. And it’s wonderful because, A, so much of my disability history is not taught. I mean, when people talk now about critical race theory and conservative media loves to use those buzz words, it’s kind of interesting to me because if the Black experience is not taught, the disabled experience is totally not.

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

And it’s weird because we are such an important part of the fabric of what makes our society function. I mean, I watched as my family has aged, and disability when you mention it in my family, typically what would come across everybody’s view was, oh, it must be Damian and Eric, that’s what disability meant. Well as people of age, what we’ve seen is disability in some way affects everybody, because my parents are boomers. My mother uses a walker sometimes because of orthopedic back issues.

Damian Gregory:

My father in the last few years has developed Parkinson’s disease. And I have other relatives that have developed other maladies that have come with age, and what that shows is that disability may be one idea when you’re in your 20, but when you’re in your 50, 60, 70, it’s a totally different construct. And so I’m fascinated by so much of how we all need to realize that disability, like I said before, is just such a natural part of life. And we need to not fear it and we need to just embrace it and realize that ultimately, we are all just trying to have an experience. Right? We’re all at the end of the day just want to have a good life, a happy life, have people that love us and care about us and feel like we’re valued and respected in our spaces.

Ashley Inkumsah:

Mm-hmm (affirmative). And how can we as a society move forward and create an inaccessible society that includes people with disabilities? And what are non-disabled people’s role in that fight? Would you say.

Damian Gregory:

Well, there’s a lot of talk in all different communities about the importance of having allies. And allies are super important, because allies normalize the experience. I’ll tell you a brief story. When I was in college, my senior year of college, I interned at the ABC affiliate here in Miami, because I was a broadcast journalism major. And I decided that unlike all the other college students, I really didn’t want to go out with the reporters, I wanted to more write and produce. Because of my physical limitations, it was just not doable at the time for me to go into the news truck and edit the packages with the reporters, et-cetera. And what I did was, during my internship I would produce a newscast. Well, one day the executive producer of one of the shows said to me, “Get a notebook out of the filing cabinet and go log this tape.” Which meant basically writing down sound for the tapes.

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

And it was a simple assignment but I wrote back to the news desk and they said, “Why do you look like so bothered?” And I said, “Because I can’t reach the notebooks.”

Ashley Inkumsah:

Hmm.

Damian Gregory:

And that’s a really simple thing, but when you are in an environment where everybody’s hustle bustle and A, you don’t want your disability to show up and B, a barrier. Now in my 40s, I would just say, “Hey, could you grab that notebook for me?” And I wouldn’t let it bother me. But at the time, in my early 20s, it was a big deal. So he went and he got the notebooks, and he went back and wrote a memo saying, we need to move the notebooks down from now on.

Ashley Inkumsah:

Hmm.

Damian Gregory:

And it was just a simple one night memo. It was no big deal to anybody, but it was a huge deal to me because what that meant was that person saw me and understood that it was a big deal that I couldn’t reach the notebooks. And that was acceptance. That was you’re part of my environment and I want you to be comfortable and I want you to be able to do your job. So that is a simple story of acceptance, and it’s been like 20 years since that happened, and I still remember because as simpler gesture as that was, it was a huge gesture to me. I think that the more we do that and the more people with disabilities are just seen as people with all kinds of desires, all kinds of dreams, whether that’s family dreams or vocation dreams whatever, I think that will go a long way towards creating the inclusion and diversity that we all want.

Damian Gregory:

Because at the end of the day, I’ve had many friends tell me that I’ve developed over the years, that when people talked about someday being accessible or not accessible, I understood what that meant on one level, but when it meant that you couldn’t come into this bar or you couldn’t sit at the bar with us, as your friends, as your colleagues, then I understood what it meant when you said, “This place is not accessible because it’s not an abstraction. ” It’s really mean that they like and really mean that they want to spend time with that is having that issue. And so it humanizes it in a way that, a squishy word like diversity and inclusion doesn’t seem to capture. Because ultimately it’s about the human experience. Right? So-

Ashley Inkumsah:

Mm-hmm (affirmative). Yeah.

Damian Gregory:

… did I answer your question?

Ashley Inkumsah:

Yes, you did. You answered my question very eloquently. We are all connected in our humanness.

Damian Gregory:

To me I’m hopeful that this era of everybody feeling empowered will be the rising tide that also lifts people with disabilities as well to become a part of the conversation. Because for so long we’ve been marginalized and paid lip service to. We all value lived experiences now, for most groups. We need to value the lived experiences of people with disabilities of all kinds, my deaf and hard of hearing brothers, my Autistic sisters, my brothers and sisters that are blind, my cousins that have physical disabilities, we’re all part of this beautiful mosaic that is America. But if nobody pays attention to us, we’ll never get our little piece of the pie.

Ashley Inkumsah:

Mm-hmm (affirmative). Yes.

Damian Gregory:

And we need to be not content to always settle for problems when we really need a loaf of bread.

Ashley Inkumsah:

Yeah. I totally agree with you. We’re definitely ready for a sea change, and 1.3 billion people, I think there are strength in numbers and it’s no time like the present for that disruption to happen.

Damian Gregory:

And the good thing is, if there’s any silver lining to this COVID situation, is that more people are becoming potentially disabled. And so what it’ll mean maybe it will open up folks that have never experienced disability to have their stories be told. And that can be a silver lining because when there are more numbers and more stories, hopefully there’ll be more representation because representation matters.

Ashley Inkumsah:

It’s been an amazing conversation, I really appreciated your time. So thank you so much.

Damian Gregory:

You asked me something and I did a huger service, and I just want to say one sentence, which is, we do the education for Nothing About Us Without us, but we also do consulting where we help people access services and all of that. And we also do advocacy, like making sure that the public policy that needs to happen, that we help people to understand how to do it on their own. So I teach self-advocacy classes. And sometimes it’s on a very basic level like, knowing your time limits, knowing how to tell a story, those kinds of things. Knowing who your public officials are, those little things. Going to a meeting and knowing, okay. Where do you go to that meeting? What do you want to come out of that one meeting with? Those little things that I wanted to mention that we do, because we do quite a bit.

Ashley Inkumsah:

Yeah.

Damian Gregory:

We do quiet a bit.

Ashley Inkumsah:

I’m sure it’s hard for you to keep up with all of the amazing things that you’re doing. You’re doing a great work, though.

Damian Gregory:

Thank you, and thank you for this opportunity and allow me to just kind of spout off.

Ashley Inkumsah:

Mm-hmm (affirmative). The pleasure’s all mine believe me, fire is all mine. And where can our audience keep up with you and all the amazing work that you’re doing and Nothing About Us Without Us.

Damian Gregory:

Our website is http://www.nothingaboutus.com, and were relatively new so we’re always open to doing new and exciting things. So feel free to drop us a line, if you have a problem, question, want to just talk, or need to make a connection with other people with disabilities, we’re here.

Ashley Inkumsah:

Mm-hmm (affirmative). Absolutely. Well, thank you again for being a guest. This was a wonderful conversation.

Damian Gregory:

Thank you.

[music]

Ashley Inkumsah:

I really and truly loved chatting with Damian. Such a brilliant individual and I really left our conversation with so much knowledge and insight about how we can use this past year and a half as a way to learn and to move forward, to create an equitable and accessible future. I mean, we are far from out of the woods with COVID, but he really outlined why we need to prioritize this ability inclusion to prevent worse outcomes. So thank you so much for listening to, watching or reading today’s episode. You can find transcripts and American sign language interpretations for each and every episode of What’s Up WID on our website at http://www.wid.org/what’s-up-WID, and as per usual we are closing out with our famous last words here on What’s Up WID. It’s a paraphrase one of our founders, Ed Roberts, we needed to get out there and change the old attitudes so we can build forward better. Thank you once again, and I’ll talk to you next time.

Graphic with a collage of COVID-19 vaccine vials.

Why Global Vaccine Inequities Are Harming People with Disabilities

By Mahevash Shaikh

When COVID-19 vaccines were rolled out, many people across the globe breathed a huge sigh of relief. 

But it quickly became evident that not every country had equal access to vaccines. In particular, people with disabilities, in some countries, have been largely excluded in this regard. 

Let’s take a look at the cause and impact of COVID-19 vaccine inequity for the disabled community. 

Why are people with disabilities not getting adequate access to COVID-19 vaccines? 

1.3 billion people across the globe have some sort of disability and people with disabilities are more likely to be significantly impacted by  COVID-19. This isn’t only because they have underlying health conditions, it’s because adequate measures have not always been provided to help them protect themselves.

Wealth disparities between high-income and low-income countries have also exacerbated the problem. 

World Health Organization Director-General Dr. Tedros Adhanom Ghebreyesus said that 87 percent of vaccines have gone to the world’s wealthiest countries, while low-income countries only received 0.2 percent of vaccines.

“Most countries do not have anywhere near enough vaccines to cover all health workers or all at-risk groups, never mind the rest of their populations,” Adhanom Ghebreyesus said at a media briefing. “Inequitable vaccination is a threat to all nations, not just those with the fewest vaccines. The biggest barrier to ending the pandemic remains sharing: of doses, of resources, of technology.”

A lack of accessibility

In many countries, the first step to vaccination is to get yourself registered online. But the registration process is not accessible for many people with disabilities. Vaccination websites are not easy to access for people with visual, hearing and intellectual disabilities. Even though the World Health Organization has released guidelines like “provide information about the vaccine, as well as vaccination prioritization, registration and other processes, in a range of accessible formats and languages,” many websites are not following them. 

An example of a vaccine website that is not accessible is India’s COVID Vaccine Intelligent Network (CoWIN) web portal. There is no audio text for Captcha, making the website unusable for people with visual disabilities and low literacy.

Even public health information campaigns are not disability inclusive, which can result in incidents like the Deaf-Blind Ugandan man, Willy Oloya, who was shot in the leg for not abiding by  a COVID-19 curfew – a curfew he knew nothing about because official information about COVID-19 was not accessible to him, The Daily Monitor reported.

Inaccessibility is common on many U.S. vaccination websites as well.

Kaiser Health News (KHN) reported that “across the country, people who use special software to make the web accessible have been unable to sign up for the vaccines or obtain vital information about COVID-19 because many government websites lack required accessibility features.”

WebAIM studied COVID-19 vaccine websites gathered by KHN from all 50 states and found accessibility issues on almost all of 94 webpages, which included general vaccine information, lists of vaccine providers and registration forms.

In at least seven states, blind residents said they were unable to register for the vaccine through their state or local governments without help.

Australia doesn’t fare well in this regard either.

A significant number of sections on Australia’s Department of Health website were found to be incompatible with accessibility software like screen readers, according to Vision Australia. The site also uses poor color contrast and excessive alt text. Vision Australia’s manager of government relations and advocacy, Chris Edwards, said blind and low-vision Australians were “left unable to determine where and when to get their vaccination, unless they had others to support them.”

Showing up at vaccination sites is also a problem in itself because many vaccination locations are not disability accessible.

The Centers for Disease Control website lists guidelines like: “Ensure vaccination locations are accessible to people with disabilities consistent with disability rights statutes such as the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973.” 


But like people with disabilities have reported in the past, these protections are retroactive, meaning that if you face access barriers, you must legally pursue it in order to get accessibility implemented, which is prohibitively expensive in both money and time for people with disabilities. 

By and large, the needs of people with disabilities have been ignored so far.

In British Columbia, it took a week of protests and a human rights complaint to include most kinds of disabilities on the vaccine priority list.

The misinformation problem

A lot of misinformation exists about COVID-19 vaccination, thanks to rumors and conspiracy theories which have sowed seeds of distrust of healthcare providers.

Even with health care professionals debunking these conspiracy theories, many people are afraid to take the vaccine due to fear of side effects. 

Limited research on the effectiveness of the vaccine on people with disabilities, especially people with compromised immune systems, means that even those who are vaccinated don’t know how they will be impacted if they contract COVID-19.


The road ahead is long and difficult

There are a wide range  of disabilities and no two people are the same. This is why people with disabilities, allies and activists all need to come together and advocate for disability rights, including in public health emergencies and disasters and vaccine accessibility needs to be prioritized on a global scale.

People with disabilities have been neglected and pushed to the back of the line for generations. From the lens of human rights and disability justice, there is no justification to exclude or delay proper access from receiving COVID-19 vaccinations. Disability will always be a human rights issue. As we continue to grapple with COVID-19 and future pandemics, people with disabilities must no longer be ignored, marginalized or treated as an afterthought because in doing so, decision-makers are costing lives. 



Catch up on our latest blog posts here!


If you are having technical issues or accessibility issues on this site, email wid@wid.org.

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Banner with text: What's Up WID: The World Institute on Disability Podcast. Beneath the banner is an image of a microphone.

What’s Up WID: Disability Representation in the Media Transcripts

(music)

Ashley Inkumsah:

Hello everyone, and welcome back to What’s Up WID, the World Institute on Disability’s podcast, where we discuss what’s up in the disability community with activists and advocates across the globe. If you’re new here, I’m your host Ashley Inkumsah. 

    Last week, I had an incredible conversation with the amazing Maryangel Garcia-Ramos. Maryangel is a Mexican disability activist who is the founder of the nonprofit Mexican Women With Disabilities, also known as Mujeres Mexicanas con Discapacidad. She represented Mexico at the United Nations convention on the rights of persons with disabilities in 2017. She’s really just an all around amazing, intelligent, trailblazer of a woman. 

    Maryangel and I spoke about disability representation in the media and really the lack of authentic, nuanced representation that we’ve become accustomed to. Today’s episode is definitely, without a doubt, one that I know that you’ll enjoy.

Ashley Inkumsah:

I’m so happy to have you as a guest today, to chat a little bit about disability representation in the media, a subject that I know that you’ve been super vocal about in the past. My first question for all of our guests is always, how are you, how are you feeling?

Maryangel Garcia-Ramos:

Well, thank you so much, Ashley, for having me on the show. I’m really excited to be able to speak about these really important issues that we see globally. It doesn’t matter where we are in the world, as persons with disabilities or activists for disability, we have basically the same, well, similar inputs, which are really interesting to see. 

    I’m doing great. We’re here in Mexico. I’m Mexican. I live in Mexico. It’s very hot, so it’s been really intense, all of these weather changes. A lot of work over here, but I think I’m in good spirits. Also, the stress, the overall world stress, is kind of reducing a little bit, with everything that has to do with the pandemic. Every day, there’s a little bit more a feeling of getting there, right?

Ashley Inkumsah:

Exactly. 

Maryangel Garcia-Ramos:

It’s very different for countries like the United States, or countries in development like mine or others. We’re still not there, but every day is a little bit more of hope. We see a little bit more of hope, so that’s good. I’m doing great. I’m happy to be here, so thank you. 

Ashley Inkumsah:

Well, I’m so happy to have you. I really am. So I know that a couple years ago, at a panel about women in television, where I know the president of Paramount and there were also executives from Warner Bros. who attended that panel as well, you called out those panelists for not including people with disabilities on their TV shows. I love so much that you did that. Why did you think, and why do you still think, that disability representation in TV, film, and in the media tends to be so lacking?

Maryangel Garcia-Ramos:

I think for a really long time, for a lot of years, we’ve been carrying this narrative, this really negative narrative around disability, for years, for example, and we don’t talk about it that much. Kind of like in our ableist systems, we just kind of accept it and normalize it.

    If we go back, a little bit of history. If we go back to maybe World War II, where Hitler, during the Holocaust, which is one of the most horrible moments in the history of mankind, when Hitler and his team killed a lot of people, especially Jewish people. There was a big genocide around people with disabilities. 145,000 disabled people were killed because they were not good enough. 

    There’s always this narrative around we’re these broken beings, not good enough. It comes to the fact that, when they talk about us, in government, in policy, there’s always been this negative narrative around us. Or this completely opposite, inspirational porn, we’re just here to inspire those who have all their abilities, and that’s all the use that we have in the world, that our existence is this kind of disastrous thing. 

    Since we have those narratives, it’s really hard to understand that … We have those narratives, and also we lack representation in different areas of society because of the ableist systems that we have. 

    For example, here in Mexico, people with disabilities, their average year that they can study is between sixth grade and seventh grade. 22% of people with disabilities in Mexico cannot read or write, for example. Most people with disabilities in Mexico or Latin America live in poverty. The system doesn’t allow us to be a part of that, because it’s not accessible, but also because we’re not part of the design and the decision-making on that, on companies or on government. It’s the vicious cycle, right? Which is first, the chicken, the hen-

Ashley Inkumsah:

The chicken or the egg. Right, exactly. 

Maryangel Garcia-Ramos:

It’s this vicious cycle. When it comes to content, this is the time that, for the very first time in a long time, in the history of mankind, we have access to creating our own content, telling our own stories. 

    The thing is, we haven’t been able to tell our own stories. When they’ve talked about us, we haven’t been part of that design or that conversation. They’ve told our stories without us. And when we see stories about people with disabilities told on TV, or told on movies, they’re portrayed by people who don’t have a disability. Which are amazing actors. That’s not the issue here. But it’s about claiming or clapping for people who don’t have disabilities, to act like someone who has a disability, seeing how amazing and admiring their life is, but in real life they don’t care about us. 

    It’s something that hasn’t been seen as sexy, or as something that could sell, or something that people could be interested in, because of these narratives. What I think, to this day, is that there is a lot of amazing stories that come from people with disabilities, especially women, and I would say non-binary people with disabilities. There are these amazing stories, regarding to women, that we haven’t told, who haven’t told their own stories. The little stories that we see around Netflix, they’re about men with disabilities, or white people with disabilities, mostly. 

    It’s about seeing that there’s this broad part of the population that we haven’t explored their stories. What the studios need is stories. They need new stories. They need to get to more people. They need to tell stories that we haven’t told before. It’s something that they haven’t realized, most of them. Also, their presentation, in not only acting, which is very important, but it’s about acting, it’s about writing the stories. Not necessarily stories with disabilities, but from the perspective of person with disabilities, for example. 

    We talk about media and news outlets, and the way they speak about us, it’s still very existentialist, very inspirational porn, talking still about all of these stereotypes that are told about us. When it comes to media, we don’t tell the really hard stories. We’re not telling that, in COVID, people of color, people with disabilities, they had it the worst when it come to COVID. We did not talk about this. In Latin America, in Mexico, we’re not even talking about how people with disabilities are not part of the people who should get the vaccines first. It never happened, and it’s still not happening. 

    Those are the things that, when it comes to injustices, we don’t even raise our hands on those stories. I think we need to be more present, and we need to keep on raising our voices, as part of the disabled community, to be able to tell those stories by our own perspectives. 

Ashley Inkumsah:

Absolutely, yeah. You touched on so many amazing things. The first thing is the idea of … Specifically, I don’t know if you’re familiar or you’ve heard about this story. I think it happened maybe last year. There is a, I believe she’s an Australian singer. Her name is Sia. She made this movie about autism. She said that she was going to cast an autistic child as the lead, but she said that she couldn’t because the set didn’t work for the child. So she ended up casting a non-disabled person. It’s just like, “Why are you not making the set accessible for someone who is autistic, versus …” I just don’t understand that. 

Maryangel Garcia-Ramos:

Why would you want to tell a story about someone who is autistic, without contemplating what it would require to tell a story about someone who is autistic? It doesn’t make any sense. 

Ashley Inkumsah:

Yeah. 

Maryangel Garcia-Ramos:

Yeah, it’s about that. It’s exactly that. It’s about we want to go and tell the stories about people with disabilities, which are very inspiring and it’s amazing and people should hear about this, but you don’t involve them in the process. Then why would you be telling this story? What’s the point?

Ashley Inkumsah:

They’re not involving them because maybe it’s uncomfortable for them. 

Maryangel Garcia-Ramos:

Of course. 

Ashley Inkumsah:

Instead of making the set comfortable for the person with disabilities, it’s just like, “Okay, we’re just not going to include them at all, then.”

Maryangel Garcia-Ramos:

Yeah, because it’s more complicated. Actually, she said it that way. “It’s uncomfortable. It’s more complicated.” Since it was more complicated, that’s why I decided to just cast this girl.” Also, her performance … Again, there’s nothing against actors without disabilities. Maddie, she’s an amazing dancer, and she was in her videos and everything. But the portrayal of the person, seeing the perspective of people with autism, seeing the portrayal of what they saw in the movie, they were like, “Did they even consult with people who are part of this spectrum, the experiences and everything around that?” 

    It’s not necessarily total fault on her performance, but it’s about the whole system around that. From the moment they say yes to the movie, from the moment it’s who is being … Not a gatekeeper per se, but who is actually making sure that this is something that represents what they want to represent? 

    Also, because the narrative was she wanted to tell the story about these people. What she wanted was, her main audience or target, was who? People without disabilities? Or was it people with disabilities? If it was, then it makes no sense. Wouldn’t you want the project to be successful? Of course you would. It just makes no sense, and it happens a lot. We see it a lot in everything, right?

Ashley Inkumsah:

Absolutely, yeah. I don’t think right now there’s a single television show, a single show on television where there is an actual actor with disabilities who’s playing a person with disabilities. Not that I’m aware of. Not in the mainstream, anyways, currently. 

Maryangel Garcia-Ramos:

I’ve seen it, but I think it was a show … I’m not sure if it got canceled. It was called Speechless. It was this guy who couldn’t speak, he had a physical disability. The mom on the show was Minnie Driver. It was an amazing story, and he actually couldn’t speak. He was in an electrical chair, et cetera. 

    Other shows like Special, he has autism, but the actor actually doesn’t. There’s another one on Netflix, that it’s called … No, it wasn’t Special. I’m sorry, I’m mixing it. Special is the one about a guy who has cerebral palsy who’s also gay. That story, but it’s one of the first stories that’s written about his experience, as being a gay guy and also having cerebral palsy and his experiences through that. It’s funny, but it’s the only one. 

    There’s a study that they did in the United States about content. I don’t have the number in my hand right now, but it’s I believe a super tiny percentage of people with disabilities are involved in the writing, in the production. Right?

Ashley Inkumsah:

Yep. That was my next point, that people with disabilities need to be involved not only as actors but in the writing, in the production, directing, as consultants. That is so, so important, all facets of the content being created, for sure. 

Maryangel Garcia-Ramos:

Yeah, making sure that nothing about us is without us from the United Nations about disabilities. It happens, of course. They cannot tell us a story about us without us. It makes no sense. Because what will happen? What Sia did, that’s what will happen. It’s not that … It wasn’t coming from a bad place. It’s just that it doesn’t work. It doesn’t portray the reality of it, which was the initial goal. If you wanted to say, “I’m going to portray something that’s not real and it has nothing to do, but it’s something super artistic and weird.” People would be like, “okay.” But if the narrative was, “I want to portray the reality of how they live and the experience …” Then it doesn’t. 

    It has to do with the decision-making from the very first place. The studio, someone who says yes, who’s the gatekeeper to say, “This show goes. We’re going to invest in the show. We’re going to spend our money on this show.” And then fail? Nobody wants that. Everybody wants the return on the investment, because it’s a business in the end. How do you make sure that this actually works, that it actually gets the broader audience’s understanding. 

    At the same time, they’re very responsible for this transformation of the negative narrative around disability. In Mexico, we have it, and we see it a lot in telenovelas. If you’ve ever seen a telenovela in Mexico or Latin America, telenovelas are these really big pop culture icons in our lives. Every time, they still talk about disability, it would be a drama if we saw it in the US, but in Mexico, it goes like, “Eh.” You know? 

    The other day, like four months ago, still in the midst of the pandemic, there was this seen on a telenovela, at night, primetime. This guy, he’s a very big villain, super big villain. He did the most horrible things to his family and everybody, the worst thing you’ve ever seen, super dramatic. At the end, the ending is that he has an accident and he’s not able to walk. He’s not able to walk or move his arms, can barely speak. He’s in a wheelchair, and he’s in jail. Then somebody says something around, “He got what he deserved.” 

Ashley Inkumsah:

Wow. 

Maryangel Garcia-Ramos:

We saw this on the main schedule, where everybody … It’s still a thing. A lot of people still watch TV, cable TV or open TV, and they see telenovelas. It’s a big thing here. I actually taped that, and I said, “So what you’re telling me is that the worst thing that could happen, to the worst person that you’ve known on this story, what’s the worst thing that could happen? It’s not jail. It’s not paying for his crimes. No. It’s being disabled. It’s not being able to walk. So what you’re telling me is that people who already have those disabilities, it’s like it’s a curse. You deserved it. It’s the worst thing that could happen to you.”

    If we still keep pushing those narratives … I asked, and we touched base with the studios that produced it. We were like, “So clearly there was no one, when they were writing this, who was like, ‘Excuse me. Is this okay?'” Because there was no presentation around that. It doesn’t necessarily have to be. It would be amazing if there would be more people with disabilities as consultants, because there is talent. They can consult not only on disability issues but on other issues, from their very own unique perspective. It’s not the same as what a deaf person will tell you, than someone who has a physical disability, or someone who has a physical disability that is part of the Black community, or people of color, or part of the Indigenous community, big Indigenous communities that are here in Mexico. You never know. 

    I think it’s more of a, ‘How is it that they don’t understand, to this day, that there are some things that, in the decision-making sessions, that they’re sitting there, someone would raise their hand, voice, and said, ‘Um, I think this is not okay?'” 30 years ago because we didn’t know this and we didn’t question much, but to this day? 2020? No. We cannot say that. No. 

    Yeah, he could be in a wheelchair on the story. Yeah, it could. But the narrative around that, saying he got what he deserved, these are the things that keep happening. It’s so normalizing our ableist systems and our ableist narratives that we don’t see, unless you’re part of the disability community, probably. Because then people won’t see it, and we need to keep pushing this. 

Ashley Inkumsah:

Yep, exactly. I think there’s a lot of people who would make the argument and say, ‘Oh, it’s just a TV show. What’s the big deal?” It is a big deal because the media has such a profound effect the way that we view the world, nature versus nurture, right? The way that we see things on TV and films, the music that we listen to, it really affects our perceptions, especially if you don’t belong to that group. Like you said, if that’s not your lived experience of having a disability, then of course that’s going to be your perception, that he got what he deserved. It’s terrible. 

Maryangel Garcia-Ramos:

Completely. I don’t think content is innocent, at all. The other day somebody was telling me on Twitter … Twitter can be a really dark place. They were telling me, “How is it that people now complain about everything? We cannot say anything, because everybody would get offended by everything.” Over here, they call it the crystal dinner.

Ashley Inkumsah:

Here there’s cancel culture. 

Maryangel Garcia-Ramos:

Exactly. Yeah, it develops into that. 

Ashley Inkumsah:

It’s the buzzword. 

Maryangel Garcia-Ramos:

Everybody can get canceled for something they said 30 years ago. We’re all deconstructing ourselves, and we’re not the same person that we were 30 years ago. Which is true. I understand that. But they were saying, “We cannot say anything.” Inclusive language over here, which is a very big deal because in Spanish we don’t have neutral language like it is in English. We have it as masculine or feminine. We don’t have a neutral. So it’s been a very big discussion around Spanish, around the world. 

    So all these things. People complain a lot about that. They were telling me, “It’s so hard. It’s so hard. We cannot say anything. All the time I’m tip-toeing on everything because we cannot … There’s nothing I say that it’s not going to offend someone. I think we’re very weak now, and we used to be stronger and more resilient back then.” 

    I kept thinking. In my own perspective, yeah, sometimes people complain about things that I’m like, “Really? Also, yes. But at the same time, I understand.” To me, it’s not that we were more resilient back then and now we’re not. The thing is, now we have more access to content. You were talking about content. That’s why. Because this is the very first time we have access to content, seeing it, creating it, talking about it, that we didn’t have back when we didn’t have … Not only internet, but these platforms that allow you do so.

Ashley Inkumsah:

Social media. 

Maryangel Garcia-Ramos:

Twitter, whatever you want, right?

Ashley Inkumsah:

Yep. 

Maryangel Garcia-Ramos:

To me, it’s just like, “No, I think people are questioning themselves more than we used to in the past.” Our parents, for example, the generation of our parents, obviously it depends on culture as well, they didn’t question their … My grandma for example. My mom would never question my grandma. “This is what you do.” “Yes, Mom. This is what I will do.” Because that’s how they were told. And machismo, or everything that has to do with gender, and gender roles, we didn’t question those things. 

    A lot of people came, paving the way for us today, in the disabled community, in the LGBT community, to help us question a lot of things. This is a moment where we’re questioning things. I don’t think we’re weaker. I think this time we have access to different perspectives, to make our own perspective. 

    It can be very dangerous as well, because you understand and you deconstruct yourself, and we can be better than we were 30 years ago, when we used to call someone a name or a particular word. To this day, you’re like, “Okay, I learned from it.” That’s why cancel culture is very dangerous, because we’re all evolving. That’s where it comes from. 

    At the same time, it’s about understanding that, with that as well, we are opening the gate, of course, to more speeches that come from hate, or from racism, or ableism, because of the access we have to information. It could be fake information, as well. I think it’s something that we need to generalize more. We tend to be very … For example, people are sharing articles that they don’t read, just because they look a certain way. Now Twitter has to tell us, “Do you want to read it first?” You’ll be like, “Yeah, it’s obvious.” But no, it’s not obvious for many people. “Are you sure you want to share this? Just read it first.” 

    I don’t think content is innocent. I think we’re very exposed to a lot of opinions, from podcasts, from everywhere you look there’s information. You get on Twitter, you’re going to be like … There are really good days, and there could be very dark moments, where you’re like, “Why is everyone complaining? Why is everyone so mad? Why is this so dense?” It’s understanding. It’s understanding that we’re all vulnerable to this. Like you said, there is a big responsibility in content and in media, and the way that we tell stories. Right?

Ashley Inkumsah:

Absolutely, yeah. I think, on the subject of this cancel culture debate, society is progressing and that’s a good thing. It’s a good thing that we’re getting to a point where we’re calling out racism and ableism, homophobia, transphobia. It’s a good thing. I think we need to embrace that, instead of wanting to go back to the past. You can’t turn the page without reading the page, you know? 

Maryangel Garcia-Ramos:

Absolutely. 

Ashley Inkumsah:

That’s really important, absolutely. Yeah. You touched on this already, the idea that there’s so many stereotypes that we see, when we see disabled characters in media. Whether they’re inspirational or they’re villains or they’re succeeding despite their disabilities. Why is it so important that we see accurate, nuanced displays of disability in Hollywood or in the media?

Maryangel Garcia-Ramos:

You know what I think? I think sometimes when we talk about diversity and inclusion, we talk about boxes. We talk about disability. We talk about LGBT. We talk about women. We talk about Black people. Whatever that means, because in the end it’s like, “There is no one single story about anyone in these particular boxes.” I think it’s important to understand that there is no one single story about disability. There’s a lot of different stories and a lot of different perspectives, and it’s important to tell it how it is. 

    It will be people with disabilities that are really proud of their disability. They will be proud of the community that’s around it. They don’t even consider, for example, being deaf a disability. It’s part of a culture, for example. There’s some deaf people who consider it that way, and it’s valid. It’s a very valid story, and it’s a very valid perspective. But if there’s someone who’s not okay with their disability and one day they want to walk again, or they want to see again, it’s a process, a very particular process, that they’re living through because of the ableist systems that they are, but it’s still a valid story. 

    So I think it’s very imp;ortant to make these stories come from the people who are living it. That way, I think it would be easier to define what is a story and what is a stereotype. Stereotype stories are mostly designed or created to create a feeling. I want to create a feeling, so that you … We’re usually used as props. We’re always the sidekick. We’re never the protagonists of our own stories. 

    These are the very first times that we’ve been seeing disabled women on the covers of beauty magazines. We were never considered beautiful. A lot of issues that we’ve never been considered beautiful because we’re these broken beings, right? Since I can’t walk, since I can’t see, since I cannot hear, I would not deserve to be called beautiful. I would not deserve to be called powerful. I would not deserve to … The first time that we’re seeing this, it’s just like, “Okay, this is a story. It’s not all of the stories, but it’s a story.” It’s important to see ourselves. 

    When I was young, I wish that I could have seen a Barbie in a wheelchair. Now I’m seeing it, but I’m older. I’m like, “Amazing. This is amazing. We can be whatever we want to be, not despite our disability but with our disability.” 

Ashley Inkumsah:

Absolutely. 

Maryangel Garcia-Ramos:

If we keep on talking about this narratives that say you don’t let your disability define you, or somebody told me that one day, “It’s amazing that you don’t let your disability define you.” I get where they’re coming from. They’re trying to tell you, “You don’t let the limitations of the world or your own ableist systems stop you from doing what you want to do in the world.” I get it, and it’s a beautiful thought. But in the end, it’s a lie. Because disability does define, not my value, because I’m worth just the same as any other person, walking or not walking we all have the same world. It’s about human dignity and about our human rights. 

    It has nothing to do with my worth. It’s more of it would be a lie to say it doesn’t define me, because it does define the actions that I do every day. If I’m going to take a shower, it’s a different process. It will define the time that it takes, the way that I do it. If I’m going to travel, if I’m going to go and have a job interview, if I’m going to try and study, it will define my processes and the way I live. So erasing this history of disability, it’s erasing my culture. It’s erasing the culture that we have around disability, that we’ve been able to be. 

    The other day, also, somebody told me, “I’m amazed how disabled people are like the original hackers. They developed this amazing capabilities to hack the system that wasn’t built for them, which in the end becomes their competitive advantage.” I’m like, “Yeah, it’s true. We are the original hackers. We’re hacking the system every day, because it doesn’t work for us. It’s something to be proud of. Yeah.” But then I kept thinking, “Well, why? Why should I be hacking the system? Why shouldn’t the system just work for me?”

Ashley Inkumsah:

Exactly. 

Maryangel Garcia-Ramos:

Like everybody else. Well, almost everybody else. I could be a part of that. Yeah, it’s good that we developed these capabilities, but in the end, is this the best way to develop them? Why doesn’t it work that way for us, also? We understand that. So yeah, it’s about taking this inspirational porn-y, existentialist narrative around that, and start looking it as not one single story. There will be different stories. Someone who is deaf in Mexico and someone who is deaf in Chicago probably will tell you a different story, right? If they’re a man or a woman or a person or whatever, it will be probably a different story, even in the same communities. There’s a lot of amazing things to be told, that I think studios and decision-makers and storytellers, there’s an opportunity that they’re missing. If they use a broad spectrum of stories, business will come out of that. 

Ashley Inkumsah:

Yep. The disability community is definitely not a monolith. There is so many rich stories to be told. That statement that you said that someone told you, the idea that your disability doesn’t define you, that reminds me of when people say, “I don’t see color.” You know, that statement. That’s exactly what that made me think of. The idea that we can’t exist as people of color, we can’t exist, we live in a racialized society, we live in an ableist society, so we can’t exist in this society without every day knowing that we are people of color, that you are disabled. You know what I’m saying?

Maryangel Garcia-Ramos:

Yeah. 

Ashley Inkumsah:

So the idea that your disability doesn’t define you, or your color doesn’t define you, it very much does because of the systems that we exist in, whether we like it or not. 

Maryangel Garcia-Ramos:

Definitely, it does. In order to erase your history, your culture, why would you erase that? You understand where they’re coming from. They’re like, “I’m trying to tell you that I’m not racist.” 

Ashley Inkumsah:

They mean well, but at the end-

Maryangel Garcia-Ramos:

Exactly. You’re like, “Yeah, but.” Even just saying it, it does have a tint of racism that you don’t understand, that’s internalized as well. 

Ashley Inkumsah:

Absolutely. 

Maryangel Garcia-Ramos:

So it’s very important to … Yes, definitely. Obviously I’ve heard other activists saying that it’s very tiring to educate everyone. It’s very tiring. Why should I get that role? I just want to live. I don’t want to keep on educating. I understand if people don’t want to do it, because you have the right to say, “I’m sick of trying to educate every white person around us. I’m sick of trying to educate.” I get it. In the end, it can be very tiring of course, but I think we need to continue. I think we need to be a little bit more understanding of the collective power that we have as disabled people. 

    I think there is a big area of opportunity there, with us and the world. I see it in Mexico and I see it in other places, of us uniting as a collective force. Because we are a very important political power, and we’re not seen that way. We’re one-fourth of the population in the world, so don’t tell me that we’re … If we’re called a minority, we’re huge. 

Ashley Inkumsah:

1.3 billion are disabled, globally. 

Maryangel Garcia-Ramos:

When you go to a bank and do a line, put them in line. Put us in a line and see if we’re a little. There is a lot of them, a lot of us. We need to understand the power that we have. Sometimes I think we don’t because of the ableist system that keeps us in the lower … “Don’t rise. Stay there.” 

Ashley Inkumsah:

Exactly. 

Maryangel Garcia-Ramos:

We have a big power, if we do it collectively. It’s not like we have to go and educate every single person. I get it. I get if someone is just like, “I’m sick of this.” But we need to be together, to make our statements and keep on pushing what we need to push. Especially with a very intersectional perspective. To me, that’s key to understanding our different powers within a community. 

Ashley Inkumsah:

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    I want to discuss your personal experiences, as a Mexican woman with a disability. Can you speak about, both culturally and socially, what your experiences were growing up and what they still are now?

Maryangel Garcia-Ramos:

Thank you Ashley. In my case, I wasn’t born with a disability. When I was 13, I didn’t have an accident or anything, just my back started to hurt. I was a dancer and I did a lot of sports. My back started to hurt, and then one day it was hurting so bad. What happened was, in my case, I had a neurological thing around my spine and whatever. It ended up with an operation, and it ended up with me becoming a person with a disability, in a wheelchair, without me being able to move my legs. 

    Then I continue to experience the world now, from the vision of having a disability. To me, I’ve always said it, in the first place, obviously being a woman, a Mexican woman, a Latina in Mexico and having a physical disability, we are, I am in a place of we’re the most intersectional discriminated group in Mexico, women with disabilities. Women with disabilities in the world, we’re like 10 times more likely to live sexual violence and gender-based violence. It’s a difficult place to be. 

    But I’ve always said, and I speak from my privilege, in the end I’ve never been a rich person or anything, but from the privilege that I have, I’ve had the opportunity to study, to have a master’s degree, to have light, running water, and food every day in my home. Which is basically not the average person with a disability in Mexico. I’ve understood that. I’ve understood the responsibility that comes from that. 

    For a long time, I felt, with my friends, I was the only one with a disability. Then when I kept on meeting other people and meeting other groups, that’s when I saw the importance of making tribes and understanding other experiences with disabilities, and other women with disabilities. 

    My work has been, right now I lead the Diversity and Inclusion office for Tecnológico de Monterrey, which is the biggest private university in Mexico and Latin America. It’s huge. It’s really huge. At the same time, I’ve been an activist and a consultant and speaker around these issues. 

    I’m also the founder of the Mexican Women With Disabilities organization. We decided to do that four years ago because I understood the power of, yes, we need to talk about disability. Of course. We need to be a strong force and always bring disabilities issues to the table. But we need to talk about gender and disability and that intersection, especially when it comes to women. Nobody was talking about it. 

    I understood the privilege that I had, being able to be in different platforms like the United States, and the work that I have to this day, the places that I’ve been able to raise my voice and be and talk. Even me speaking English, it’s a privilege, speaking two or three languages, coming from this country.  Obviously speaking English has opened doors. Right now I’m talking to you, right? It has opened doors that a lot of people don’t have that. 

    To me, it was like, “Well, we need to find ourselves, as women with disabilities. We need to talk about the issues that nobody is talking about. Violence. If we want to talk about menstrual health, we want to talk about sex.” Nobody talks about that to us. We don’t talk about sex and reproductive rights, because of machismo and patriarchy and all these systems. At the same time, ableist systems that we don’t even see a woman with disabilities would want to … We don’t even talk about it. It’s not even on the table, right? 

    When we talk about our ability to decide, for example in the case talking about Britney Spears right now, which has been publicized because she is Britney. I love her. She’s been my queen since forever. But there’s a lot of people that have been going through the same things, with their legal capacity and with their rights and their reproductive rights, but we’re not talking about it when it comes to women with disabilities. 

Ashley Inkumsah:

Because they’re not celebrities. As much as I … Again, me too. Britney Spears, growing up, she was my queen as well. 

Maryangel Garcia-Ramos:

Yeah. 

Ashley Inkumsah:

But I feel that this movement, I worry that it’s less about disability justice and more just about fandom. I don’t necessarily see that same energy being directed towards people who are marginalized, people who are poor and have disabilities. I don’t see that. That’s my concern with it. 

Maryangel Garcia-Ramos:

Completely. Completely. Obviously it opens the door for conversation, which I think is amazing. Because it’s happening, because it’s her. Even her, with all the privilege that she’s had, she’s living this. It helps us to ignite conversations around, “Well, what happens when you’re not Britney? What happens when you’re not white? What happens when you’re …” 

    We need to keep on talking about gender and disability. It’s something that, in my experience, the way I’ve grown into your own self-love and my own perspective and maturity and understanding, and deconstructing all of these thoughts that you have and the way you learn, to me it was by being next to other women with disabilities and their experiences, with their own stories. 

    That’s what I’ve been doing, to this day. We’ve been pushing the issue. We raise our voices through reports that we give to the UN. At the same time we create content, we create platforms. We create these tribes in different states in Mexico, to see, “Okay, where are these women with disabilities? Okay, we talk about them a lot, but where are they? Can they all put their words in a Facebook group and talk about it? Where are they, and where are, especially, the most marginalized women with disabilities in this country?” Especially Afro Mexican women with disabilities, especially Indigenous or originary groups in Mexico who have a disability. Where are our trans women with disabilities? Where are they? We need to speak to them. We need to listen to them. We need to create these tribes and find ourselves. 

    To me, it has been a process around understanding that, and being able to listen. I think it’s one of the most important things, is to listen. We will always talk from our experience. We will always talk about what we learn. But if we have even the slightest tiny privilege or decision-making, even the slightest, tiniest, we can open doors for a lot of people who haven’t. Not because it’s our responsibility, but in my case because I chose to do so. The moment that I say that’s it, that’s it. 

    It’s been amazing to understand the collectiveness, the collective, same feeling, collectively, that we all live, and the things that intersect us. It’s been a long journey. To me, I’ve been having a disability for around 21 years of my life now and experiencing the world that way. 

    Also, listening to women from other parts of the world. Even in the feminist movement, sometimes we are the forgotten sisters. When we talk about diversity, the last thing that we talk about is disabilities. We never make sure that everything is accessible, our videos, our meetings. I’ve seen some feminists that criticize women in general, for not putting their bodies on the line, marching, because we need that, to put your body right there. I told them, “A lot of women with disabilities can’t put their bodies there.” It’s important to understand that it doesn’t make us less feminist, or it doesn’t make us less interested in the subject. It’s just that we have got to understand that us women with disabilities, we’re also women. It’s important.

    Also, opening the door to everybody that’s part of the trans community or are non-binary. Because in the end they’re in limbo, right? We need to also listen to those stories and the particular experiences that they live and how we link them to our feminist movements, or how we link them to our gender equality movements, as well, within the vision of disability. 

    To me, that’s very important, and it’s something that I will keep pushing as long as I decide to. I think it’s something that we need to raise more our voices and be more vocal about it. Not literally, but yeah. 

Ashley Inkumsah:

Absolutely, I agree with you one hundred percent. I love the work that you’re doing with your organization, Mexican Women With Disabilities. I love that you are pushing for every state in Mexico to have disabled women as leaders. I feel like definitely, as women, we’re brought up to … Although society is progressing, like we talked about, but we’re definitely as women globally brought up to not want to seek leadership. I just love the fact that you are trying to have women aspire to those roles. If you can tell us more about the work that you’re doing to cultivate disabled women leaders in Mexico, I would love to hear more about it. 

Maryangel Garcia-Ramos:

Thank you. Mexican Women With Disabilities, we’re a nonprofit organization. We’re all volunteers, basically. We’re not sustainable yet. What we do is three things. The first one is creating tribes and creating networks of women with disabilities. Through our Facebook groups, through different networks, so that we can identify them in different states. 

    When we link to other organizations and have different workshops, or there’s opportunities to for them to be in a position of leadership, or even in political spaces, whatever spaces they are, not necessarily in government, we can download this information to them. We can push that information. We can identify them. We can just be together and talk about issues, and not feel alone in this world, all together. 

    The second thing that we do, we create content. Through our platforms, through our storytelling, we create content. We have a platform that we call Disability Talks. We talk about issues from the perspective of women with disabilities. It has been amazing because we’ve been able to talk about things that they weren’t talked about before, kind of content. It has been great. 

    Then the third one, we do everything that has to do with political incidents, political advocacy. We’ve been working closely with the senate to, for example, in the States, to change this law that is designed to prevent violence for women, but it didn’t include disability and it didn’t include interculturality. We were like, “Well, this law cannot pass. This bill cannot pass.” We were pushing that forward, as an organization. At the same time, we’re creating these different reports, that we’re collaborating with human rights here in Mexico, or the United Nations. We’re doing all that, those three pieces of work. 

    I think the most important one will always be the creating networks of women with disabilities. The moment we identify ourselves, we find ourselves, and we see our power, then that’s the way everything changes. They see us. They see us, and we open doors. 

    There’s a beautiful quote I’ve always loved since I was a little girl. I love Frida Kahlo. There’s something memorizing about her. 

Ashley Inkumsah:

Yes. 

Maryangel Garcia-Ramos:

We lived in Mexico City, and I’ve been to her home like three, four times. I love her. I identified with her eventually, after I had my disability, because of our broken spines and everything that she felt and how broken she felt, and it was amazing. 

    There was this one letter that she wrote one time. I’m not going to exactly say it that way, but it was something around a quote that she said. “There was this one time that I felt really lonely and really broken. I felt that’s the way I was going to feel forever, in my life. Then I stopped and I realized that, what if there’s someone in the world that feels as broken as me and feels so much like I do?” Then she says, “If you are reading this right now, that I’m writing, I have to tell you that you’re not the only one. You’re not alone. If you do feel as broken as me, then we’re together. You’re not alone, and we’re broken together.” 

    To me, it’s one of the most beautiful quotes I’ve read and I’ve seen. To me, it’s just like here’s this woman that I’ve never met in my life, I just admire her work so much, and her life, in every sense, in every single way, but how amazing it is to connect with another woman. Especially what you’re going through. Not only the negative parts, but also the beautiful parts of life, the beautiful parts of being part of a stable community. 

    To me it’s just like, the part of not feeling alone, the part of this world being so unequal and so unjust towards these discriminated groups we might be part of, historically discriminated, then how amazing it is to find yourself with someone, to see yourself in a little piece of someone else. To me, that has been powerful. The way that I work, and that I push towards, our activism, our advocacy, is understanding that, “Yeah, I will tell my story, I will tell my perspective, but I have all these historical people who opened the way and all my sisters behind me.” Not behind me, but beside me, right? That’s how I feel. 

    To me, that’s very important. That’s what helped me and has been helping me, and the way that I see it, with other women with disabilities in Mexico, to understand the power that we have, by ourselves but also collectively. 

Ashley Inkumsah:

I love that. I love it. I love all the work that you’re doing. It’s amazing. What advice would you give to other women with disabilities, especially women of color, who maybe are aspiring to attain leadership positions or a sense of community, but they’re experiencing sexism and ableism and are maybe feeling discouraged? What would you tell them? 

Maryangel Garcia-Ramos:

I would say, “Keep pushing.” Keep pushing, but not on your own. Do the work that you have to do on your own, but make sure that you have these tribes, that you’re part of this community. I think when we’re part of this collectiveness, it creates this political pressure on organizations, on governments. So we have to find ourselves, give us strength together, and say, “I’m here, but I’m also part of this community.” I think that changes everything. 

    Also I would say, “Keep telling your stories.” It doesn’t matter where. If you have 100 followers on Instagram, if you have four, or you’re telling your story to your family, to your friends. Or if you have a huge platform and you’re as big as Beyonce. I don’t know. Just keep telling your story, because I do believe storytelling changes the world. Especially when it comes to people who haven’t been able to tell our stories, especially women with disabilities who are of color. We know this. It’s something that has to keep on happening, because then it will happen, how we started this conversation, they will tell our stories without us. We will be invisible to a lot of groups. We need to keep on pushing. 

    Also, “We’re not alone.” We’re all in this together, as women, and as women with disabilities. We find ourselves. I think that’s so valuable. In this life, I don’t know if we will come back in some other kind of way or in another life, but in this one particularly, it’s amazing. To me, it has been amazing to find other women that inspire me because of who they are, because of how they’ve managed to live, to do life. Not because of their disabilities, precisely, but because of their essence, because of who they are. I think that’s key, as mentorship, for us to keep on pushing. 

Ashley Inkumsah:

What advice would you give to television, people who work in executive positions in television, in film, in the media, as to why they should include people with disabilities? What would you tell them?

Maryangel Garcia-Ramos:

I would say, first of all, listen. I think a good leader knows how to listen. If this is a business, then keep on listening, because there is a big business around the stories that have not been told and that you can tell. They would definitely be successful. 

    Also, it’s not about only social responsibility or because diversity and inclusion is the right thing to do. It’s the strategic thing to do. It’s the organic thing to do, because the world is diverse. As we said, we’re one-fourth of the population in the world. Why are you not telling these stories? There’s stories that could sell, and there’s stories that could reach the other people. Sometimes they tend to think that disabled stories will only touch disabled people. Or if we tell stories about Black people, they will only touch Black people, they’re only made for Black people. Not necessarily, right? And LGBT. They tend to think that. They’re these boxes. No. For us, in the user experience, with our diversity, no, it doesn’t. It touches a lot of people. 

    It’s imperative to tell these stories not only because of representation and it’s the right thing to do, but because it’s a big business opportunity and because it is an opportunity and a responsibility to transform the world and to teach the world new stories. That’s their role. That’s what they get paid for. That’s where their talents reside. Open it. Open that box that nobody wants to really open and they’re afraid of. And make us part of that process. 

Ashley Inkumsah:

Absolutely. 1.3 billion, that’s a pretty big number. That’s a pretty big audience to reach. Even if you’re not included in that 1.3 billion, disability intersects every single one of our lives. Maybe our family members, our friends. We all know someone and love someone who has a disability. I mean, it’s high time for sure, for people with disabilities to be included. One hundred percent, yeah. Well, thank you so, so much for sitting down with me and chatting today. I so enjoyed this conversation so much. Where can our audience keep up with you and all the amazing work that you’re doing?

Maryangel Garcia-Ramos:

Thank you, Ashley. This has been an amazing conversation. Yeah, let’s keep on talking. You can find Mujeres Mexicanas con Discapacidad, Mexican Women With Disabilities, you will find them on Instagram, on Twitter, and on Facebook. You can find me, Maryangel, in Twitter at maryangel_ and maryangel_grg at Instagram. 

Ashley Inkumsah:

Awesome. Well, thank you so, so much. I really enjoyed the conversation. I really did. 

Maryangel Garcia-Ramos:

Thank you so much. Yeah, let’s keep doing things together. 

Ashley Inkumsah:

For sure, for sure. (music).

    Yet another great conversation. Dare I say one of my favorites that I’ve had on this podcast. Although all of our guests have been absolutely exceptional, but Maryangel really honed in on the idea that people with disabilities deserve to have accurate, nuanced depictions of them on television, in film, and in the media overall. Movie and TV sets need to be accessible. They need to have people with disabilities in the writers room, behind the camera, directing, producing, everywhere decisions are being made. 

    She also gave some awesome advice to women with disabilities, and she’s doing some awesome, actionable, transformative work with her nonprofit, Mexican Women With Disabilities. Again, just a really all around trailblazer, such an important voice in the Latinx disability community, and really in the global disability community overall. What an amazing pleasure it was, to speak with her. 

    Thank you guys, though, so, so much of listening to, watching, or reading today’s episode. It’s time for those famous last words here on What’s Up WID. To paraphrase one of our founders, Ed Roberts, “We need to get out there and change the old attitudes so we can build forward, better.” I’ll talk to you next time. 

Banner graphic with Tik Tok Creators: Imani Barbarin, Spencer West and Lucy Edwards.

Disabled TikTok Creators You Need to Follow

By Drew Dakessian

The disability justice movement has long had an unofficial slogan: “Nothing about us without us.” It asserts that the lived experience of disabled people is critical to policies that affect them and to stories that center them. And yet, for decades, disabled people often have been absent from the disability narrative in the media. However, the advent of social media has afforded an unprecedented chance for disabled people to make their voices heard at last. 

Many disabled people are now using their social platforms to promote positive disability representation.

Reclaiming the narrative

Some think what limits disabled people isn’t their disabilities but how society perceives them. Of course, that, in turn, puts the onus on disabled people to surpass society’s conceptions and thrive despite artificial obstacles.

Thus, “positive disability representation” runs the risk of toxic positivity — the belief that you should only have a positive state of mind and not dwell on negative emotion. The internet is no exception; many media portrayals about disability are what the late, great Stella Young dubbed as “inspiration porn.” This type of storytelling depicts disabled people “overcoming” their disabilities thereby serving as uplifting models of the triumph of the human spirit.

But a growing number of disabled people have been using the popular video-sharing platform TikTok to tell their stories their way. Here are 15 disabled creators who are turning the inspiration porn trope on its head.


Britt (@myelasticheart)

Britt was diagnosed with non-vascular Ehlers-Danlos syndrome at age 13 and complex regional pain syndrome at 19. In late March 2020, she posted a video captioned, “Chronically ill folks have done this all before ya know #covid19.” Since then, she’s been sharing TikTok after TikTok in which she sheds light on a disability-related issue, answers a question, or offers some (non-toxic) positivity to other “babes with mobility issues.”

Ella Willis (@ellaellaw)

Ella Willis doesn’t shy away from being candid about her autism symptoms — even and especially when they seem contradictory. She also doesn’t hesitate to assert that being queer and autistic aren’t mutually exclusive. 

Erin Novakowski (@wheelierin)

@wheelierin

face check cuz i still have no funnie left (i’ll find some soon) why does the pink half my head have to sit so weird. purple just minds its business:/

♬ Beggin’ – Måneskin

Erin Novakowski has spinal muscular atrophy. She often harnesses TikTok to educate non-disabled people about the disabled experience in videos replete with unfiltered raw conversations.

Gem Hubbard (@wheelsnoheels_)

@wheelsnoheels_

#WheelchairAccess done right. There’s #NoExcuse #fyp #Accessible #PlacesToVisit #Brighton Where do you like to visit that’s accessible?

♬ Fly Away – Tones And I

Gem Hubbard uses a wheelchair due to a spinal cord injury, and she has made use of that unique perspective on mobility both to educate and entertain. Without glossing over the reality of her situation, Gem discusses her life experiences and shares lessons in her TikToks.

Jay Johnson (@itsjaaayyy)

Jay Johnson is a 19-year old TikTok sensation living with polymyositis. Her TikToks focus on living with a chronic illness and how she finds catharsis through makeup and fashion.

Imani Barbarin (@crutches_and_spice)

Imani Barbarin is a disability rights advocate and creator of the online platform Crutches and Spice, a blog and TikTok about her experiences as a Black woman with cerebral palsy and disability issues  in general. She declares, “Working too hard and overextending yourself to prove that you’ve overcome your disability will only disable you further.” 

India Sasha (@indiasasha)

India Sasha calls herself the CEO of one-hand humor. She lives with symbrachydactyly, which in her case means her right hand has four tiny boneless fingers and a nubbin of a thumb. “Two things make me happy: educating people about disability and making people laugh,” she says in a TikTok posted back in December. 

Isabel Mavrides-Calderón (@powerfullyisa)

At the young age of 16, Isabel Mavrides-Calderón is already making waves in the disability rights community via Twitter and TikTok. On the latter, she draws from her experience as a person with a spinal injury to share her wealth of knowledge about disability rights and disability history. She addresses a whole host of critical topics, such as the Ugly Laws and invisible disability. 

Jessica Kellgren-Fozard (@jessicaoutofthecloset)

@jessicaoutofthecloset

It’s #deafawarenessweek so use my main communication tool and see if you can read my lips 🤔😉 #deafawarenessmonth #lipreading

♬ Read My Lips – Jessie Ware

Jessica Kellgren-Fozard is a popular YouTuber and creator who is deaf and has chronic illnesses. She has amassed over a million followers across her social media platforms. Her TikToks center around living with disabilities, her love for vintage fashion and her LGBTQ+ identity.

Jiya Day (@bbjiya)

@bbjiya

Having cerebral palsy is the biggest villain to my social anxiety 😩😂 #disability #cerebralpalsy #ableism

♬ original sound – Jiya

Jiya Day, who has cerebral palsy, uses her TikTok to set the record straight on stereotypes about disability. And she does so authentically and unapologetically. Her TikToks focus on her college adventures as a person with a disability.

Kelly Barendt (@kellyandfa)

Kelly Barendt has Friedreich’s ataxia, a rare neuromuscular disorder that causes movement problems and can shorten life expectancy. “Illness can be isolating,” she writes in one blog post, “but with social media it doesn’t have to be.” She strives to make feminist content “that’s helpful and inspiring to other young women with disabilities and chronic illness,” she explains

Abi Jay (@autistic_artistic)

Abi Jay is just what her TikTok handle implies: an artist. For a little over a year, that artistry has taken the form of what she describes as “relatable and educational” short videos on her disability, autism. And while she may not yet have as sizable a viewership as some of the other TikTokers on this list, we’re calling it now: she has a bright future ahead of her. 

Laiken Olive (@thebionicbabe)

Twenty-one-year-old Laiken Olive may be best known as the first recipient in the U.S. of the ‘Venom Snake’ bionic arm. But they also regularly share insightful content about life with a limb difference and what it’s like to be an ambassador for the disabled community overall. Spoiler alert: It’s not always easy.

Lucy Edwards (@lucyedwardsblind)

Lucy Edwards has over 1.6 million followers, and it’s easy to understand why. Her TikTok consists of videos with practical information on day-to-day life as a blind person, explaining how she uses everyday objects, including eyelash curlers and robot vacuums. By normalizing disability without sugarcoating it, she’s giving inspiration porn a run for its money.

Spencer West (@spencer2thewest)

Spencer West uses his killer comedic timing and flair for physical comedy to give viewers an inside look at how he deals with his disability in all aspects of day-to-day life as an amputee with sacral agenesis — while also making sure to clarify that it may not be the same way that others with the same disability do.

Are you following these creators on TikTok yet? Catch up on our latest blog posts here!


Headshot image of Drew Dakessian.

Drew Dakessian is a Freelance Writer for WID.

Black woman wearing a face mask.

Why People With Disabilities Don’t Want to Go “Back To Normal”

by Hailey Hudson

As the vaccine rollout continues across the globe, our social media feeds are full of photos from cookouts, videos from vacations and status updates of being back in the office once again. Most people feel nothing but joy about getting back to “normal.”

But the disability community, however, isn’t necessarily joining in the celebration.

While the COVID-19 pandemic has been a terrifying and difficult time for all, many disabled people have found a silver lining. As the world became virtual, it became easier to participate in many activities and events that were previously inaccessible. Doors that had been previously closed were now swinging wide open. And as the world returns to “normal,” this newfound access is something many people with disabilities don’t want to lose.

Here’s how COVID-19 helped make the world more accessible and why it’s such a big deal that these accommodations are now being taken away.

How COVID-19 Made the World Accessible

Over one billion people globally live with disabilities, and that number is only going up. In the U.S., employers are required by law to offer “reasonable accommodations” to disabled employees. Most other countries have some type of equality legislation that applies to people with disabilities such as India’s Persons with Disabilities Act, Vietnam’s Law on Persons with Disabilities, the United Kingdom’s Equality Act and many others. But making these accommodations available is more often said than done.

That’s why for somebody who is disabled, an option for remote work is often key. Many disabled people may be unable to work full-time in an office or other environment. Working from home, however, allows an employee to create a setup that’s fully accessible to them. And while many employers were uncomfortable with remote work before COVID or flat-out refused to let disabled employees work from home, those same companies sent all of their employees home when the pandemic hit.

It’s not just the workplace that became more accessible during COVID. As events, social activities, doctor appointments and virtually every facet of our lives moved online, many disabled people found they were able to participate in the world in a way they had never been able to before. They could speak at or attend conferences without having to worry about the travel. They could join in birthday parties or holiday celebrations from the comfort of their own accessible home. And when they did need to venture out into public spaces, social distancing and contactless options benefited many people with disabilities.

It’s no wonder then, why the disabled community is reluctant to return to the life we all once knew. 

Returning to “Normal” Post-COVID

The COVID-19 pandemic increased accessibility for the disability community. But will these options continue to be available long-term? The jury is still out.

According to the consulting film McKinsey, companies saw a surge in productivity when their employees switched to remote work during the pandemic.

Ninety-four percent of employers surveyed by Mercer, an HR firm, also said that productivity at their company was either the same as or higher than it was before the pandemic, SHRM reported.

Hoping to capitalize on that increase in productivity, some organizations are now planning to offer a combination of in-office and work-from-home options.

But many employees don’t feel reassured. While companies are talking a big game, many of them have yet to roll out detailed guidelines on what these remote work opportunities are going to look like. And for some disabled employees, that leaves them wondering whether the idea of remote work post-COVID is too good to be true. 

According to The New York Times, in the U.S., just 48 percent of the country is fully vaccinated. In countries like Congo, Papua New Guinea, Jamaica and Nepal, less than five percent of the population has been fully vaccinated.  

And as mask mandates are now being lifted, more and more people are also ditching their masks in public. In some countries outside the U.S., wearing a mask during flu season was the norm even pre-pandemic. Continuing to wear masks would help protect disabled people who have weakened or compromised immune systems and are vulnerable to all sorts of viruses and illnesses beyond just COVID. But with so many people tossing their masks, it’s no wonder why disabled people are worried about returning to what used to be the norm.

Lifted mask mandates put the disability community at risk immediately as well as long-term. Although many people are excited and ready to return to normal, the pandemic isn’t over yet. New and highly contagious Delta variants are spreading quickly among unvaccinated populations. Rushing to get back to normal overlooks people who have not been able to get vaccinated yet and puts their lives at risk as well as those with compromised immune systems.

Including the Disability Community Long-Term

The disability community has been pushing for accommodations — such as remote work options and telehealth appointments — for years. But for years, the disability community was denied — until COVID-19 rolled around and suddenly everyone was receiving the accessibility accommodations disabled people had needed long before.

As many people push to return to “normal” life, it’s growing increasingly clear that our idea of “normal” really just applies to a world full of non-disabled people. And that’s not OK.

Organizations need to stop and think about how COVID protocols may have actually improved life for disabled people. “Returning to normal” and denying these accommodations makes people with disabilities feel overlooked, left out and unwanted.

During the COVID-19 pandemic, many disabled people experienced being able to fully participate in social activities, advance their careers and stay safe as they navigated the world. But after getting a taste of what life could be like, they’re being left behind once again. This is prime time for our world to make a change and show the disabled community they’re valued enough to make these adjustments. By continuing to provide accessible technology and other accommodations, we can create a more accessible world for everyone.

Headshot of Hailey Hudson, a white woman with eyeglasses smiling.

Hailey Hudson is a Freelance Writer for WID.