The Adjustable Table, episode three, Disability Rights and Disability Justice, sponsored by Wells Fargo.
Hello everyone and welcome back to the Adjustable Table. The Adjustable Table is a four part series created to raise awareness and conduct conversations around disability rights and disability justice. My name is Ashley Inkumsah and I'll be helping to moderate today's discussion with my wonderful colleague here at the World Institute on Disability, Moya Shpuntoff. And in our work here at WID, we hope to bring the real experiences of people with disabilities into conversations about what's necessary for people with disabilities on a global scale to truly be supported, included, and celebrated. And on today's episode, which is the third in our four-part series, we're discussing disability rights and disability justice with a fantastic group of panelists who each have an expertise in this field. And our special guests, the amazing Lydia X.Z. Brown and Jen White-Johnson.
Lydia X. Z. Brown is an advocate, organizer, educator, attorney, strategist, and writer. Their work focuses on addressing state and interpersonal violence, targeting disabled people living at the intersections of race, class, gender, sexuality, faith, language, and nation. Jen White-Johnson is a neurodivergent and disabled parent, designer, educator, activist, and advocate. Her work explores the erasure of Black disabled children in digital and literary media. Her work is also currently available in Target and Everpress. Susan Mazrui is WID's Board President with expertise on public policy issues related to disability, aging and social justice. Thank you all for being here. We're excited to have you.
So excited to have this conversation. Now we all know that the Disability Rights Movement helped to secure civil rights for disabled people, enabling for many to go to school, participate in public life, and to have careers as well. However, the work is far from done with the emergence of the disability justice framework. There are new ways that leaders and activists are approaching issues of inclusion, equity, and intersectionality for people with disabilities. Our first question for our panelists is what is the difference between disability rights and disability justice?
Lydia X. Z. Brown:
This is Lydia. I'm a youngish East Asian person with short black hair and glasses wearing a dark polo and sitting in an area where there's just a window with dark blinds behind me. So, you mentioned the emergence of the disability justice framework when introducing this just now, and it's really important for us to name who and how. The Disability Justice Framework was co-created between 2005 and 2006 by a coalition largely of Black and brown disabled people, and queer and trans disabled people, and particularly queer and trans disabled people of color. And some of the people who created the framework of disability justice are Patricia Berne and Mia Mingus, Leroy Moore and Eli Clare among many others. It's just a few of those who were involved with that development. And Disability Justice as a framework was created in large part to move beyond the failures and the limitations of the Disability Rights Movement.
The Disability Rights Movement and its attendant framework is focused on the basic idea that to improve life for disabled people, to improve social conditions for disabled people, we need to advance inclusion. We need to somehow use the tools of law and policy to cooperate with institutions that hold power, government institutions, corporate institutions or academic institutions, for example, to have disabled people be better represented, to have disabled people be better included, and to create and enforce legal, regulatory, juridical or legislative protections for disabled people, both for positive rights like the right to and education or the right to housing. And for negative rights, the right against discrimination, the right against being abused. But what the Disability Justice framework recognizes is that the work of law and policy and inclusion, while certainly necessary and important in many ways for real people's lives, that work will never be sufficient and it certainly won't get us to liberation.
How can the work of law get us to liberation when the legal system in the United States is literally built upon genocide and land theft and forced removal and chattel enslavement? How can our policies move us toward disabled people being welcome in society and afforded human dignity when the very idea of inclusion is still rooted in maintenance of status quo and upholding institutions as they are, institutions that are rooted in eugenics, institutions that are rooted in technologies of elimination, institutions that are rooted in not just erasure of our narratives, but in terminating our lives. So, the disability justice framework at its core for me represents two things. One, a call for us to understand ableism or disability oppression as inherently intersectional. That is that ableism is both necessary for and dependent upon every other form of oppression.
You do not have ableism as it exists now in the absence of white supremacy or settler colonialism or capitalism. You do not have the maintenance of white supremacy without the maintenance of ableism. Disability justice invites us to understand just how intersectional the crisis of ableism is. And therefore how we as disabled people, even in the same community, even with the same disability, do not experience ableism in the same way we experience ableism differential. The second thing that disability justice accomplishes is it offers us a vision of the kinds of futures and communities that we are already building and that we need for our lives, for our health, for our safety, for our freedom, and for the future. Disability justice reminds us that liberated disability is intersectional, that our freedom is intersectional. That if we are not all free, as so many freedom fighters and thinkers and organizers have said in so many different ways forever. If we are not all free, then none of us are. And so disability justice does those two things. It teaches us to understand better the crisis of ableism and it offers us a vision past ableism.
Yes, thank you so much Lydia. And a quick image description of myself. I'm a brown skin, caramel skin, Afro-Latina woman with a red headband and I have a gap in my teeth and I'm wearing my favorite overalls, and I'm wearing yellow earrings with Tupac on them because I love me some hip hop. And I'm coming to you from Baltimore, Maryland in my studio space with a whole bunch of advocacy artwork behind me. And so just to uplift what Lydia was just saying, if collective liberation and freedom really need to coexist with being pro-neurodiversity, being pro-disability, making sure that we amplify those specific communities. And that's why awareness months to me don't really do the job because it's not enough to just be aware that disability exists and that disabled people are make up half of the population of the entire world. There's billions of us.
But that acceptance and that amplification of our identities, of our personhood, of our body minds are also being honored. And that means leaning onto our wisdom. Leaning onto the leadership of the most impacted, which is one of the principles of disability justice. We're living in a space where there's a war on Black and disabled women, which is very much represents who I am. And I'm just going to pull up a statistic here quickly from the Center for American Progress that was just released early this year in February, that Black and disabled women and girls experience economic insecurity at higher rates often due to job loss, subminimum wages as low as 2.13 per hour. That's $2 and 13 cents per hour for disabled workers and reduced earnings caused by barriers to education, skills development and other challenges. And that also includes very traumatic births and that also includes Black maternal health, which I dealt with having a son who is living as a beautiful autistic child.
He's 10. But he was born two pounds, 15 ounces. I wasn't always in the best shape health wise while I was pregnant because I was very much trying to live my life as a disabled woman, as a neuro-divergent woman trying to mask through society, trying to meet everyone's expectations. And oftentimes society very much says that, well, you're the problem. They very much expect for us to blame ourselves and we work too hard. But I'm living in ableist society that expects for me to become this body of capitalism, to become this body of overproduction. When in essence I shouldn't be forced to overproduce. I was built to give care. And I feel like those are the things that disability justice helps to embody.
And Susan, I'd love to hear your perspective as well.
I think for those of us who lived through the disability rights movement the early days, there was a level of optimism that if we could just have our rights protected, it would resolve the problem. And unfortunately it was led by probably the people who were most privileged. And it was not inclusive of diversity as we know it. It did rely on a lot of the same masking. If you can get into the workforce, you are going to dress for success that was going to make things all equal. And of course it didn't. And I think the disability justice movement has two huge, I mean, there's several differences. But the two biggest ones that strike me is that the recognition of intersectionality. I think in the disability rights movement, we all have the same rights. But we don't have equity. We don't face all the same challenges.
We don't all have the same healthcare, we don't have the same resources. We don't have the access to education. If we're stopped by the police and you're white, you might be referred for counseling. If you're Black, you might be thrown in jail. I mean, you look at the students, I mean the school to prison pipeline, a lot of kids who end up in going into juvenile detention are kids that really should have gone into special ed but weren't provided those opportunities. They may be acting out or angry because of very real oppression. And so I think it's a more inclusive approach. And I think the other thing is I think there was a hierarchy in the disability rights movement of if you were in a wheelchair, that's the pinnacle, if you are having a physical disability, hearing loss or deafness, maybe a little lower.
And maybe we don't even deal with people who don't have obvious physical disabilities. Maybe we say we're separate, better than. And so I think that the disability justice movement recognizes a lot of the flawed optimism and the reality that we need to not only be present, but we need to be appreciated, that we shouldn't have to pay a disability tax to survive. We shouldn't have to be in a situation where we are looking on how much we can contribute because if we work too long, we lose our ability to survive because we don't have the adequate support services.
I mean a whole range of things. And that it's really about accepting people as they are and having value in that. I think that that's a big difference. Not value in can you pass and can you be part of the role that is how we succeed monetarily, as defined by the white majority population. And I think there's also recognition that there are cultural implications that were not even addressed or were not something that's comfortable to bring to the table. It was the same forms of racism, the same forms of phobias. I think society has grown, not always in a good way, but I think this is kind of 2.0 of who we need to be to be fully appreciated as human beings.
Definitely. Sort of building on that, I would love to hear why is it important that we prioritize moving towards a disability justice framework and who benefits the most from this?
Yeah, that's an excellent question. And I know for me personally, as I had mentioned earlier, as a Black neuro-divergent mom who's trying to exist in this space as an artist and as a designer, as her whole self authentically, a lot of the role of designers often gets packaged into, okay, here's a problem. We have to offer a solution and we have to box people in and we have to design for them. We have to design to eradicate their identities, their sickness, their disease, instead of using design to uplift who they are as a people, to uplift their humanity. And it's because we're very much overwhelmed and overshadowed with disability being viewed in this very kind of medical charity model lens. Often Black and brown disabled folks aren't really asked to contribute to the discussion from and from that hierarchal space that's led by the so-called experts in the disability community. So, we have to create those spaces, which is what the disability justice framework represents.
It represents us disabled folks having to basically take back what's ours and reclaim it and to recontextualize it and to give it a bit more of an evolved perspective, especially when so many of us are under attack. So, I feel like the ones who really benefit from this framework are folks who are familiar with designing, redesigning, recontextualizing, artists. We understand what it's like to build entire worlds with limited, very limited resources. And we understand that art is our survival. At least for disabled designers, the one thing that's really important is to lean on that crip, disability wisdom and to educate allies and so called co-conspirators to to make sure that they lean on that wisdom. That they lean on the leadership of the most impacted. Because in turn, that is ultimately how we're going to create collective liberation. And it's very fluid to infuse those principles into frameworks.
So, I feel like folks that are very much used to building worlds, recontextualizing, remixing design, reclaiming design, shifting the scope of these worlds that are built by folks that aren't from our experiences, that don't understand access the way we do, I feel like those folks can benefit from disability justice, the framework the most. And then also, just like I said, designers who feel like we don't necessarily have to be boxed in by the typical design model. It's make it look pretty, but well, it can't just be really beautiful. The text can't just be jumbled everywhere on the screen or on a poster if it's unreadable, if it's not available in braille, if there's not even available for free to a certain extent.
That's one of the things that I do a lot as a designer is that if my work is meant to free people, then some of the resources have to be available to give as acts of love, as acts of solidarity. Some of my most impactful protest work is available for free so that folks can actually join on that element of protest alongside me. So, yeah, it's awesome how art can act as a framework of resistance. And to me that is a complete embodiment of what the disability justice framework means for me personally.
Thank you, Jen. I think that really resonates for me as a designer in this space. So, thank you. Susan, I'd love to hear your perspective as well.
Well, I mean, the easy answer is everybody benefits. But I think the people who benefit the most are folks in the community who haven't had the ability to share and direct the experience. I mean, the thing that strikes me is the artists of Thereisienstadt were people in the concentration camp who, despite incredible risks, captured the truth as it was, as opposed to the propaganda and the things that are nice. And I think that one of the things that is incredibly beautiful about the disability justice movement is the fact that we are talking about providing an opportunity for the many truths, but from the people who experience it.
And so even though we're talking about social issues, we're talking about equity issues, I think that it strikes me as an opportunity to tell our own stories. And it strikes me as an opportunity to correct some of the misperceptions that came about just as we look at history today in general. And I think we benefit from the crosspollination. As a community we benefit from the power that comes in collaboration, being co-conspirators. I mean, that gives us strength. And I think the art and the inclusion and the willingness to say some painful truths gives us the power.
Absolutely. What do you think, Lydia?
Lydia X. Z. Brown:
It's not important. It's necessary. If we don't collectively move toward disability justice, which of course there are many people who are already there who are doing that work. But if the rest of the disability community does not make that move, then we are all at peril.
Absolutely. I believe there's definitely strength in numbers, and I think the disability justice framework is so important to recognize all of the disability community's intersectional identity so that we can all mobilize together so that we can all achieve collective liberation. I want to talk also about common misconceptions that people have about this framework. So, what is a common misconception that each of you have found about disability justice and how have these misconceptions impacted you personally? And I'd love to start off with you, Jen.
Yeah, thank you. Yeah, I mean, just kind of taking note from what Lydia was saying, that it's like feeling that the framework in itself and the misconception is that it's not for everyone. It's only for this pocket of community folks, maybe folks that have this type of disability and who are living it in this particular space. Or maybe it's just meant for the people who created it and who are artists. But in essence, for all of the different intersections of disability culture and the way that we exist, the way that we coexist and co-create with one another.
And I feel like the misconception is that for ... It makes me angry sometimes that able bodied non-disabled designers won't lean towards that actual disability justice wisdom and they feel like they can fix, or they can adjust or solve the actual disability access problem without necessarily infusing aspects of justice into their own "allyship". And they're not necessarily willing to view allyship as a sacrifice. And that they have to really co-create alongside us.
Absolutely. There was something you had said earlier about the fluidness of disability justice. Can you tell us more about that?
I'm going to keep it short because I really want Lydia to hop in. But the fluidness for me is that the principles continue to evolve and they continue ... I feel like we're allowed, and I feel like this is something that is intentional on behalf of the founders, is that they're artists and they realize that life is a complete and total improvisation, that we're always readjusting and remixing the way that we create and that we exist, especially with limited resources. So, I feel like that's where the actual fluidity comes into play, realizing that each day is going to be a different experience, especially as someone who lives with ADHD in a neuro-divergent body, every day I might exist in a completely different mind space or I may meet someone new or I may shift to a different project that's kind of touching and leaning on a different side of myself that I didn't think existed.
And so being able to hold space for that improvisation, for that actual fluidity just means that I'm willing to understand that not everything needs to exist in this very structured way. Because I feel like structure very much aligns itself with privilege and with ableism and everyone has their perfect kind of system that they exist in. But I feel like it can't necessarily be that way for disabled folks because again, we're working with very limited resources and we basically have to build our own tables, build our own spaces. So, we have to be ready to embrace that actual ability to be fluid.
And Lydia, I'd love to hear, how do you think that that plays out in mainstream politics and policies?
Lydia X. Z. Brown:
Oh boy. We could have a conversation about this for hours. This is Lydia speaking. There are so many common misuses, I believe some essentially deliberate and others inadvertent and unintentional of the phrase disability justice. If you go to, there's like some website, I think it's disabilityjustice.org or.com, I forget which one it is, but they just accidentally got free publicity. They're a law firm that all they do is they do advocacy for beneficiaries of social security. That is very necessary urgent work that particularly is important for disabled people of color who are disproportionately poor and therefore more likely to need access to social security benefits. But that's not disability justice. But they have the website name. The phrase disability justice is so commonly misused to mean either any form of legal advocacy related to disability, which is not the case. In fact, the vast majority of legal advocacy, even when undertaken from a civil rights perspective is still not disability justice.
Some of it is, I would argue or at least is disability justice informed and in alignment with disability justice movement work. But by and large, if it's legal advocacy, there's a good chance it's not disability justice, even if the people doing it might otherwise be engaged in disability justice in other parts of their lives and their work. The other more common way that disability justice is misused is particularly by left-leaning or just outright leftist activists, organizers and groups that believe that disability justice is just a more hip way of saying disability rights when as we talked about already, they are not interchangeable, they're not the same thing at all. And that's how you end up with more and more white liberal wealth privileged institutional nonprofits creating projects and programs that they call disability justice or they say are focused on disability justice, but it's not disability justice work.
None of it's disability justice work. And even in my life, I work in a number of different arenas. We didn't name them all when we talked about what I'm doing just because the work is separate. But in some of the work that I do, I am working very firmly in the disability right space. So, I'm very careful and intentional in those spaces to say my work is informed by disability justice because that's who I am and that's what I'm committed to. But if we are doing advocacy around federal regulations, that's not disability justice work. If we're doing advocacy around corporate practices, that's also not disability justice work. My approach to that work is always going to be informed by disability justice priorities and movements. It's not disability justice. But on the other hand, the work that I've done around mutual aid, around collective care networks, that work is disability justice.
The work that I've done that is about building alternatives that are explicitly abolitionist in nature to crisis response, that work is disability justice. So, there are different parts of the work even that I'm engaged in. It's just one example using myself, and I know this is true for many of us who are doing disability justice work. There are a lot of spaces in which we may be engaged in which we care deeply that are not actually disability justice, but we are careful not to conflate that. But white wealth privileged settler institutions are not so careful. And either out of ignorance or sometimes I would argue out of malice, they co-opt and they misconstrue deliberately what disability justice is and what it means undermining its radical aims.
The last thing that I want to talk about on this question is conversations that are happening closer to home. The disability community, which is itself really a contentious phrase because there isn't really just one disability community, like there is, but there also really isn't. We're often broken up and siloed by category of disability, by appearance, by diagnosis, by access to diagnosis, by race, by gender, by nation, by so many different aspects of our identities, experiences, and particular disability experiences that it's almost a misnomer to state that there is a single disability community, because by and large, the people that are working in critical disability theory aren't necessarily the same people working in civil rights disability law who are by and large not the same people who are doing community organizing in the streets, who are by and large not the same people that are doing work within well-resourced nonprofit organizations.
Even the ones that are in fact doing their best to be accountable to community and that are not just white and wealthy non-profits. They're not always the same people. In fact, most of the time they're not. I think the people like Jen and I who have worked in multiple spaces, we're in the minority, that most people in disability were, are primarily in one of these spaces or maybe they're in two of them at most. But it's not that common for the same people in one of these areas of work to be doing work in all of those spaces. It's not very common at all. And to the extent then that disability community does exist, I would argue that it's marked just as much by our extreme differences and how we experience and relate to disability and how we experience ableism as it is by our commonalities, the ways in which we all experience some form of marginalization, the ways in which we've all experienced some form of trauma, the ways in which in our own spheres and spaces, we are all fighting against the violence of erasure, of exploitation and of deprivation.
But one of the things that happens so often for all of us who are disabled is that we often get caught up in a hierarchy of disability and ask most disabled people, and they will tell you that the hierarchy exists and there's no consensus on exactly what that hierarchy is. But in general, there are certain commonalities in how most people would describe the hierarchy, that disabled people who are otherwise more privileged are closer to the top and disabled people that are otherwise more marginalized for other reasons, not disability related, are generally closer to the bottom. The disabled people who more reliably use verbal speech are closer to the top and disabled people who generally don't or can't reliably use verbal speech are closer to the bottom. The disabled people who can be perceived as intelligent and therefore distance themselves from disabled people who have intellectual or cognitive disabilities generally are closer to the top.
And people with disabilities that are assumed to be not intelligent generally are closer to the bottom. Disabled people who can be perceived as or claim to be stable or functional or as sane, tend to be closer to the top and disabled people who are written off as too crazy or too unstable or not functional for whatever reason, whatever disability they might specifically have, tend to be closer to the bottom. Disabled people who are more conventionally attractive by white settler norms tend to be closer to the top and disabled people who are not conventionally attractive because they are fat, because they have a disfigurement, because they're darker complexion, for any of these reasons, may be closer to the bottom in general. And those are generalities, right? And I'm not trying to claim that there is an actual oppression Olympics where there's some disabled people that are basically not marginalized and some that are the most marginalized out of literally everyone.
But it is true that lateral ableism and internalized oppression within our community affect all of our lives. Racism is alive and well in the disability community and so is lateral ableism. And because of that, unfortunately I've encountered for many different corners of these disability communities, the misperception that disability justice is only for some disabled people or that if someone is talking about disability justice, I've heard it both ways. They either only care about people that have specific additional marginalized identities in society, and so don't care about people with disabilities that might appear to be relatively more privileged or they only care about the more privileged disabled people. And people with disabilities that have been long-term institutionalized or have very intense intellectual disability are excluded and are not part of the disability justice space.
And I would argue that that is incorrect, that disability justice is literally for all of us. If it is not for all of us than it is actually for none of us. Now, of course, that's not to say as we know, as I literally just said out loud, that plenty of individual people and organizations absolutely do perpetuate the disability hierarchy, absolutely do attempt to cling to oppression Olympics and absolutely do work over and over again to perpetuate marginalization and harm within our community. That is real, but that is not disability justice.
And Susan, I know you had some thoughts around competitive wokeness is how you put it when we were chatting earlier, and I'd love to hear you speak to that.
[People who have] been around for a while, hear disability justice and hear the messages. They just react negatively because they think it's just, oh, a bunch of young people who are whining. It's like general society. I mean, you hear that and it's not that. I think that for people who really listen, they understand some of the nuances, but I think many people don't know how to become more informed or how to be a better ally or how to support the issues they may at a philosophical level think, yeah, that makes sense, because when I was in school, everybody, or almost everybody around me who had a disability, was a white person who had a physical disability. I think there's also an issue of when the disability rights movement, independent living movement came out, they were very clear to say, we have a disability, we're disabled, we are not sick.
And I think that that was a huge loss all around. And I think that's one thing that is different now that within the disability justice movement, it's a piece of marginalization, but it's not a way of being better than. I mean, if you look at the laws, a lot of them would say it would not include someone with, who had HIV or would not be ... And the thought was, well, if we don't do this, if we don't let that go, it will never pass. And I wasn't in the room at the time, but I know as a person who has MS and have had it for a number of years, it was not the part of me that I could bring into the room.
So, I think some of the misperceptions come from just a knee jerk reaction and not listening. I think some of it comes from people not knowing the difference and not knowing where they can go to support. And I think sometimes it is a co-opt because it's a catchy phrase that maybe you can raise some money with. So, I think there's a lot of misperceptions. But I would want to raise to Lydia and Jen if, what would you say to someone who said, I really want to understand this more? How do I do this? I want to be a co-conspirator, but I haven't felt welcomed in the disability organizations I've approached. What do you say? How would you say they could empower themselves and empower the organizations?
Do you mean from a non-disabled person's perspective or from a disabled person's perspective?
I'd say both, but I think especially people who've been marginalized where they haven't felt comfortable.
Yeah. Okay. No, that's an excellent question. And for someone who has personally dealt with what you just asked, I've had to continue telling myself this and others. Lean on the wisdom, lean on the folks who have paved the way, who put in the work unapologetically. Folks like Fannie Lou Hamer, Bradley Lomax, who were really working for the people by the people to uplift the people and they were black voices, is realize that people were doing the work for you long before you even existed. So, that if you feel that you don't have the power, if you feel like you don't necessarily have the resources, look at what they did while dealing with aspects of police brutality, racism, everything that we're still continuing to deal with now, but they were able to amplify and to be long lasting iconic voices that we still uplift today. And realizing that there's power in our disability history and realizing again that you're not alone.
And that's what I have to constantly remind people. It's that you are not by yourself. You do not have to create collective liberation in a silo. We can co-create. We can collectively care for each other. All of this is for us, by us. And I feel like that is what a lot of folks have issues with. It's, I live in isolation. I don't have anyone that I can turn to that I can lean on. But in essence, it's like, please know that there is a community that is out here that wants to uplift you and support you. That's what I tell everyone. And I give people out my personal contact information. I create artwork that helps to keep those conversations going. I use my own disability as its own act of resistance. I use mothering as an act of resistance so that way I cover the actual artwork and the design work covers all different aspects that it intersects with mothering, with Blackness, anti-Blackness, with ableism, with education, being a mother, having a young autistic son.
So, I feel like as long as those folks that live on the margins, they need to know that they're being represented. So, it's really the responsibility of a lot of folks within this disability cultural space to, and as you had mentioned earlier, to realize that this is intersectional. There's no you without me, there's no me without you. So, what work am I doing to make sure that I'm embodying all of those intersectional spaces? Audre Lorde, amazing, movement worker, author, writer, Black femme, the fact she was able to actually intersect cancer and her disability, like her disfigurement in realizing that I'm not necessarily going to get reconstructive surgery because I lost one breast. Please let me exist in my cyborg body. Please let me exist in who I am as I am. And that works still ruminates with so many people today. So, it's like lean on that wisdom that's already set, the pace that's set the tone for you.
I would say that it's important to be okay to understand, especially when you're dealing with health issues or the ability to deal with an environment or something that sometimes existence is resistance. And that's enough. I mean, it's really, it's something that I've had issues within members of the disability communities where I know when I was diagnosed with cancer, it was really important for me to talk about it. Not because it was part of the Pity Olympics, it was because I thought it is a part of the human experience and within the community, within the disability community, we should be okay to talk about it.
And I've known several people who didn't feel comfortable, people who were definitely leaders in disability rights, who would not share that aspect of their life. And it just reinforces the same thing that you have to be perfect, have a perfect body, perfect color, perfect gender, whatever it is, which weakens everything. I mean, it's never true. And so I think that we need to embrace the fact that if you are looking at disability justice, it is the whole person. And sometimes existing is hard enough and it is something to be appreciated and understood.
Definitely. I want to come back to this idea that several of you brought up before about disability rights organizations specifically co-opting disability justice, especially for Ashley and I working in the context of the World Institute on Disability, it's really important to us that we get that right and that we aren't a part of that co-opting. So, for you, what tells you that an organization is simply co-opting it rather than actually supporting it? And how do disability rights organizations need to change in order to actually support disability justice?
Lydia X. Z. Brown:
This is Lydia. These are the questions that I ask. Who is making the decisions? Who holds power? Where is the money going? What are they working on? What are their aims and objectives and what strategies are they using to get there? The answers to those questions will be revealing, like greatly revealing as to exactly what they are working toward and whether they are using disability justice informed strategies and adhering to the principles of disability justice or not. And if the answers are, for instance, all the same people are making the decisions, but no community members. We've put 10 different statements about disability justice on our website, but there are zero multiply marginalized disabled people in groups getting a single dollar from us. Or we say it's about disability justice, but we're really just focusing on giving more money to corporations and giving them a platform and training police then it's not about disability justice.
How do you think organizations that rely on funding generally from a capitalist perspective to get the resources to employ the folks who need to do the work on disability rights or disability justice or anything along those lines, how they work that together because they're talking about funding from either government usually, or corporate organizations. How do they maintain that balance when one of the principles is really about not being part of that capitalist society?
Lydia X. Z. Brown:
This is Lydia. There's a saying that many people have heard before, that there is no ethical consumption under capitalism or another version of that, we are all compromised and we are all complicit. And I take those statements as a recognition that there is no source of funding right now that is free from any capitalist influence or power because we live under capitalism. At the same time our recognition of that reality does not mean that we have to swear ourselves to a performative as citizenism either. Because even to be able to do that is a hallmark of privilege for someone to say, I won't take literally any money ever, and I refuse to accept it and I will not work for any institution that could be compromised, which is all of them, every single one of them, nonprofit, corporate government, or academic, they're all compromised. You have to be extraordinarily privileged to make that declaration.
And I say with the caveat, assuming that you're otherwise living a minimally comfortable life, I suppose if you literally did go the path of the original Buddha, that maybe you are in fact deliberately choosing to live completely devoid of any possessions and with no housing or shelter. And that's your choice to do that. But most people, that is not what they're choosing. If they're saying, I won't work for nonprofit, a corporation government, et cetera, they have enough wealth privilege, or their family has enough wealth privilege that they don't have to engage in labor in some form or another. But at the same time, we can be deliberate about what lines we are choosing to draw for ourselves. Where will our boundaries be? What types of money will we say that is the type of money that I absolutely cannot accept? And on the other hand, I know that I've had these conversations with other activists and organizers that sometimes we will choose, sure, we'll take this $2,000 grant money for this one project, which in the grand scheme of things is not actually that much money.
Even though I would really like a $2,000 check, please, by all means that would pay so many bills. But in the grand scheme of things, that's not even more than a month or two is worth of housing depending on how much you're paying for housing. But with rent in most places over a thousand dollars, yeah, that's not that much money. But we might say, we're going to take that $2,000 because better that money, compromised though it is, go to one of us, than go to another absurdly privileged, cisgender, non-disabled white man who doesn't care about how he's harming the community. But then there are other folks in the community who I think also make the very privileged, not privileged is the wrong word, who make the very principled decision to decide even so I personally won't be able to live with myself if I take that source of money.
So, I'm not going to do it. I won't take that particular source of money. So, far be it from me as one person to tell other organizers what you absolutely can or cannot do. But I will say, I think there are some lines that we should probably generally follow. If the money is coming from the genocidal, tyrannical dictator of a known genocidal regime, then maybe we shouldn't take that money. On the other hand, there's a question of can we do any work that receives US federal government funding without being complicit and ongoing genocide and settler colonialism right here? And there's a really good argument that no, we can't and you shouldn't take that money. But on the other hand is that money any more or less dirty than taking money through a corporate foundation for one of the corporations that's one of the largest leaders on the planet, and that is destroying the lives, the livelihood, and the health of thousands of disabled people in the global south.
And when we get to that level of scale, I think again, it comes back to a recognition. All of the money is compromised. That doesn't mean that we cannot have principles. That doesn't mean that we can't be strategic in what money we choose to accept or refuse to accept, but if we're looking for whose source of funding is the purest source of funding, we all lose that game. And then we're spending all of our time trying to nitpick each other's source of funding rather than actually attacking the fact that a handful of corporations and billionaires control like 99% of the planet's wealth at the expense of literally every single one of the rest of us.
Just to uplift what Lydia was saying, it's just literally imagine a Black disabled artist or Afro-Latina artist such as myself, realizing that pieces of herself have to necessarily be tied to that capitalist politic, which is one of the principles of a disability justice, like anti capitalist politic. And it's just like, right? It's like I don't necessarily come from a place of privilege where I can actually turn down very specific gigs, but there is a line that I have to continue to actually learn to not cross when the corporation or the organization that's reaching out to me has never uplifted any Black and brown disabled artists or designers. And when it's very clear that I'm just being used as a token or I'm being used as a mascot, I feel like those are conversations that I'm continuing to have with folks. And it's like, okay, so I'm on your social media or I'm on your website and your particular platform doesn't necessarily represent people who look like me or who think like me or who create artwork like I do.
So, what is the purpose of me necessarily aligning with your platform? Am I just an opportunity? Am I just a token? So, that is the line that I have to consistently make sure that I don't cross or use the opportunity to maybe specifically state, okay, well this is maybe why I should be infused into your platform because you need some melanin, you need actual color within your space to show people that you are, this is the direction where you actually want to go in. So, it's definitely difficult when you're not coming from a place of privilege when you're black and brown, a black and brown disabled person. And you're very much used to, and I said this earlier, leaning on your own resources, but what happens when the money runs out and the phone stops ringing or when the emails stop coming?
That's like the constant anxiety that I live with constantly as an artist and a designer to know, are people going to continue seeing the relevancy of my work? And sometimes that aspect of freedom isn't enough for folks because they're very much rooted in, okay, well how can I profit off of that freedom? How can I take that freedom and run with it so that it benefits me and no longer your people? So, those are the types of discussions that I would challenge and that I would consistently have with a lot of those spaces that want to continue attempting to profit off of us. And it's like one of the things that Lydia had mentioned earlier, where's the funding going? Who have you already been funding? Those are all ... but yeah, it's definitely a question that needs to continue taking up lots of space.
A lot of disability issues are very nuanced. One of the ones is visual descriptions, except when it relates as it did to this conversation about how does this impact your perception or your experience or your authority. And so in this conversation, knowing that you have a disability gives you more expertise. You have the lived experience. I think that's important. You're a person of color in this conversation. Or if you're in a board meeting or a presentation, I would want to know, is it a diverse group or not? What is the experience? How is it informed? Are you a they or she? I mean, that's critical to respect, but as a blind person, I know that the visual descriptions came from organizations that wanted to be inclusive but didn't really ask.
And it makes me angry when people do that, not in this context, to be fair, when they're not providing access to visual things and at other times, so a large description of what a person looks like, which to me, except when it relates to the topic, I don't care so much or it relates to their experience. I feel like it's a sighted person's way of saying, if you want really need to be in ... we want you to feel included and to be included you have to be like me and appreciate these aspects of vision that A, you may not even be able to relate to, and B, you might not care about. And so it's so hard to always know what the right approach is unless you listen to the people who are most impacted. And I think that's where a lot of disability justice leadership comes from.
And I think that's a perfect segue into our last question, which is what can an individual do to support disability justice? And we can start with you, Susan.
I think it goes to listening to folks like on your panel today who have taken a leadership role and have clear experience to teach and to learn and to be willing to say, we were wrong. We need to learn more. We need to change paths. It's the fluidity that was talked about earlier, and to be inclusive and understand that people are not, the community's not a monolith and people are not just one characteristic.
Thank you for that, Susan. That was beautiful. I think that to continue to support the work that many of us have done, are currently doing, and that we'll always do is to fund us. A lot of us are doing some of this stuff for free. Some of us are creating resources out of the goodness of our own heart. A lot of the resources that I created in the beginning were very much for mutual aid purposes, was to just that were my own creative acts of resistance. And so it's been very easy for folks to co-opt it and for folks to just slap a symbol on a statement in solidarity, but they're not necessarily disability led.
They're not necessarily uplifting disabled voices. There's no disabled people on their staff. So, it's just be genuine, be authentic, be true, and hold space for our wisdom, hold space for continuing to learn and unlearn because that's all disabled folks are spending their time doing. Just like Susan said, we understand that there is fluidity in this and that we're allowed to remix and that we're allowed to improvise and that we're allowed to continue opening ourselves up to new, to better. And I feel like because we understand what that process is like, we want for others to kind of follow our lead.
Lydia X. Z. Brown:
I'd say to people often in our conversations, and I think this mirrors just the conversation that we've had today so far too, that your individual circumstances where you are, what communities you are a part of will often dictate what opportunities are available to you to be advocating and to be moving forward with disability justice in mind, if you are a teacher, the work that you can do will look very different than if you're currently working in retail. If you are a person who currently does not have any access to transportation and you live at home and you don't have any support team or family members that can help you get places, the kinds of things that you can do are not going to be the same as somebody who has enough money to be able to travel a bit on their own and has the particular access to independent transportation to be able to do that.
So, I hesitate to offer any kind of prescriptive list or a suggestion for here is a thing that you specifically can do, or here is a list of five things that you should all definitely try to do because four of those five might not be applicable to you, they might not be relevant to where you live, where you work, the kinds of relationships that you have, the communities that you belong to. But what I can suggest is that if you are not tapped in yet to what's happening, I promise the work is already happening, if not in your exact neighborhood, then not too far away in person or online, that if you are hoping to learn more, to read up, to listen up so that you are better informed and better able to plug in and support the work that is already happening, which as Mariame Kaba reminds us, we should always ask who is already doing the work, if we're not there yet so that we can support that work.
I promise that there is an avenue to learn. If you use TikTok, if you're on Instagram, if you are a, go to the public library and community center person, if you're on email list servs and that's your jam, whatever it is, I guarantee there are people advancing the work of disability justice that are in all of these spaces that are present and that our building communities and building collectives. And so wherever it is that you feel most comfortable being online or in person, whatever means of communication and learning works the best for you. I promise this work is there and you absolutely can and should tap in and join us in that work if you are not there yet because it is happening. And if you do that, that will open up a world of possibilities to you to think about how you can use the resources you have at your disposal, your knowledge, your skills, your energy, your spoons, and if you have money, if you have space, if you have property, those resources too, what you can do with those resources to help advance the work of disability justice.
Absolutely. What a perfect note to end on. Thank you. Thank you so much to our panelists and to all of you at home for joining us for today's episode of The Adjustable Table. You can find transcripts for this episode in the description box down below. Next time we'll be talking about international disability justice.
Thank you to panelists, Jen White Johnson, Susan Mazrui, and Lydia X.Z. Brown. Moderators and producers, Ashley Inkumsah and Moya Shpuntoff editing, Moya Shpuntoff. Special thanks to Carrie Griffin Basas, Carmen Daniels Jones, Deborah Dagit, Janni Lehrer-Stein, Karen Tamley, Kathy Martinez, Katherine Seelman, Marcie Roth, Megan Mauney, Megan Kennedy, Sarah Helm, Sarah Pashe, Sevana Massih, Susan Sygall, Tali Bray, Michelle Lantini, and Reggie Johnson. Thank you to Wells Fargo for your generous support of this series and your longstanding partnership with WID.
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