Also here today we have Sevana Massih who is Vice President of Service Delivery at Aira. She has spent 20 years of her career in the corporate space, and in her current role she provides strategic direction to scale Aira's services, meeting the growing demand for visual interpreting as an accommodation by public, private, and higher education organizations. Sevana will be speaking from her own experiences and perspective today. Lastly we have Nicholas Love, who is the Director of Community Inclusion here at the World Institute on Disability. Nicholas focuses on systems, policies, and tools for optimizing the full community inclusion of people with disabilities. Nicholas is a national speaker and advocate for diversity and social justice with over two decades of experience in competitive integrated employment. Nicholas is a subject matter expert on the topic of employment on a national level. Nicholas was also acknowledged as one of the 100 Trans making a difference in America in 2014. Welcome everyone, we're so excited to have you all here.[ASHLEY]: Thank you Moya for that wonderful introduction. Now, we know that one of the ways that we describe discrimination that people with disabilities experience is by using the term ableism. Ableism is the discrimination and social prejudice against people who are perceived to be disabled based on the belief that non-disabled people are superior. This is rooted in the assumption that disabled people require quote-unquote "fixing" and that people are defined by their disabilities. Ableism can either be intentional but it can also be unintentional and can be found in everything from our language choices, which we hear in popular phrases such as "falling on deaf ears", to entire systems including policies, education, agencies, and entire industries. [MOYA]: With that in mind, people with disabilities often encounter both implicit and explicit biases in the workplace due to these ableist attitudes that are so deeply ingrained. How do people with disabilities advocate for themselves when they experience ableism at work, and what can employers do to support them? [SEVANA]: Hello everyone! Personally, in my personal lived experience, over my journey of 20 years I have learned that self-advocacy is not easy but it does get over time as you build confidence and practice so it is what I have learned personally it's been critical to become very self-aware um because you're not only advocating for your needs but you need to be able to also show how you contribute to the success of the organization. So I needed to become more self-aware about my own disability and become more comfortable to talk about my deaf identity, my needs, and understanding my rights, being clear what type of accommodations I needed when I needed, because I didn't want others to make decisions for me. So - oh so practicing self-assertiveness was critical. It didn't necessarily mean being aggressive and coming in saying here is my rights here's what I need, but being able to vocalize what required for me to be personally successful in the workplace, and also building that confidence came to reminding myself on a daily basis that I was not a burden asking for tools that I needed to use on my terms as a form of accommodation. And lastly I realized that how critical it was to leverage and utilize support and experts around me, so if I joined a new team who had never worked with a deaf individual before, leveraging access and cultural experts to come talk about Deaf culture, tools and resources, how do you work with an interpreter to kind of set the tone and give everyone around me the tools to effectively navigate. I will have to say one of the key components of this change what companies can do is not just drive this from a diversity and inclusion strategy, but set the culture of accessibility across the organization more from a perspective of I'm changing the environment versus changing the individual to fit the environment that they have. Part of that change of environment includes implementing accessibility procurement standards and holding vendors accountable to rigorous standards, providing accessible website, accessible tools, whatever platform or materials, whether it's an accessible PDF or anything around the environment including physical design of the buildings and their offices. Really incredibly important to hold vendors accountable to those standards because once bigger organizations use their skills for good holding vendors accountable to accessibility it's good for everyone else. And I think it's also critically important to track progress with all our business leaders making data-based decisions. Many companies post representation data on their website, they track gender, ethnicity, lgbtq, veterans - very hardly you see data posted about disability on company websites. When you post your representation data publicly that's a form of self-accountability that means you're gonna always strive for continued improvement and try to do better, and it does send a message whether you're truly a great place to work. And lastly, in my experience as working as a HR professional as well I have learned there's an opportunity to educate human resource professionals as well as employment lawyers beyond compliance and truly understand how accessible tools and resources and accommodations doesn't necessarily uphold someone's native skills, it's just a platform to give them to be able to do their best job and often, those individuals are the ones in their organizations that make decisions about what types of accommodations will be approved or not approved, and the lack of awareness puts the burden on the individual with disability having to advocate and educate and create awareness, versus meeting them halfway and say here are some potential tools that could be available for you - what works for you what are your needs, versus making decisions for them. So that will be my recommendations on importance of creating a culture of accessibility across the enterprise. [NICHOLAS]: This is Nicholas, I couldn't agree more, so perfectly said. I think when you're talking about putting the burden on the individual with the disability it often, we may not even know what is available to us due to limited access to technology, due to living in poverty, due to having challenges. We won't know everything that is available to help us so for an HR person to have that awareness would be very important to be able to even allow us to know that oh there is something that would work better, to be able to help me be fully there for and contribute to the workplace. And I think often employers wait until the person's in front of them to then scramble and figure out how to do it and that causes additional stressors, it makes the employee feel like now they're being showcased and spotlighted which could be very uncomfortable for some people. So having that information up front, right, creating a culture that truly understands true diversity, equity, and inclusion and doesn't just focus like, okay we're going to do our cultural competency on disability and this is what it means, but truly bring that into so that the employer looks like they're welcoming to people with disabilities, the people with disabilities again won't have that burden that you spoke of put upon them, they won't be showcased, and it also creates that an environment for those who have -- the word people use a lot is a hidden or invisible disabilities. I myself have quote, "a hidden disability" and you know, change that language - you said very importantly, change that language to be more about apparent and non-apparent disabilities. So I have a "hidden" disability, it brings a shame factor to it, and then I have to out myself and trust me, I've outed myself on enough things already, so it outs to myself again and I shouldn't have to do that. So if you have a truly inclusive environment to start with it isn't about the person and it then brings in more of a diverse workforce that is very beneficial to the bottom line for employers, it helps those individuals that are already employed feel confident about my employer cares about me and maybe I can get accommodations too because I myself - and we'll talk about this a little bit more later - stretched myself and did things that were damaging myself just to hide the fact that I had a disability for most of my career. And also then friends and families of people with disabilities feel they're included and important. And another thought is those who acquire a disability on the job, right, do they have to hide it now because they used to be "capable" and now maybe they're not seen that way. So if we create a culture where it is fully inclusive up front and not waiting for the challenge, which I don't think really is a challenge, to be in front of you we could get a lot more diverse workplace and get more people that have skills and gifts to offer. I'm done. [HABEN]: Haben speaking now, um there was some awkwardness around figuring out when I can speak and and how we're moving forward, but that signaling that you were done, that was super helpful Nicholas! And I really also appreciated you centering the experiences of people in a culture where there is so much pressure to hide parts of ourselves and to appear non-disabled. There's so much pressure and images that the perfect employee is non-disabled and that is deeply hurtful and toxic. I also really liked Sevana's points, one of them was being aware of internalized ableism. There's so much ableism in our society that sometimes we inadvertently accidentally internalize it so for many of us, advocacy starts out with self-advocacy, and then expands to advocacy for the greater disability community. And in working on our own internalized ableism, being aware of our language is a huge part of that. Sometimes we say "people with disabilities", which is in contrast with how we talk about other underrepresented groups. We say woman without having to emphasize all the time, person who is a woman, person who is a man, we're comfortable just seeing a woman or man. So this extra work of having to trip over ourselves to emphasize person, people, I feel that that actually perpetuates stigma. It requires us to do mental gymnastics whenever we're talking about disabled people and there's been a movement for identity first language - by 2022 we should be comfortable with the fact that disabled people are people, and shouldn't have to emphasize it over and over again, so why not make it easier for ourselves and just say blind people, disabled people. So there's a movement for identity first language instead of person first language. I also think it's important to recognize that there is a lot of diversity among disabled people, we disagree we have different opinions and that will continue, that's part of a rich culture with lots of changing ideas and new perspectives constantly coming in. So having disagreements about identity versus person first is absolutely okay. I'm done. [ASHLEY]: Yeah Haben, I think that is a wonderful point that you bring up that people with disabilities are not a monolith and I think that this panel is such a great example of that, how we all have so many different unique perspectives that we can all bring to the table to share and yeah, I just really appreciate you bringing the fact that people with disabilities are a rich tapestry of you know human beings so I really appreciate that you brought that up. And we discussed earlier how ableism can exist in systems, and many workplaces often alienate disabled people by having ableist stipulations, such as requiring heavy lifting or quote excellent communication skills, or coming into the office even when work can be done remotely, inaccessible career portals, and or punishing employees for taking too much time off of work, and all of these often cause disabled people to live with Incredible fear of losing their jobs and the associated health benefits. What would change this for people with disabilities? And we can start with Nicholas. [NICHOLAS]: Thank you, this is Nicholas. So I've experienced this, I was born with my disability but it hasn't been apparent most of my life and I myself was told I was quote fixed through the medical abuse that I received as a child um so I could walk. So I hid my disability and was very fearful of employers knowing about my disability because I would be seen as weak, and as a trans man I always had to try to be more masculine, be strong, and I was very fearful that I would be seen as weak and that people would use my disability as an excuse to fire me because I am trans. And so I had a job working within the disability world and I was told I was taking too much time off, and that if I was sick and I needed to call off, I needed at least come to the office first and wait for my supervisor to show up. So I literally drug myself to the office, laid on my desk, and waited an hour for him to come in and go okay you can go home. Well the point was it was getting to the workplace that was my challenge, it was getting up and knowing that my legs were going to work, if my pain levels were too high, and I couldn't share that for fear that I would be fired not only because of the disability but they would use that as the reason, like look you can't show up to work, and they'd fire me because I'm trans, so there was there was a discriminative feeling. I didn't understand you know why we had to fit certain criteria for jobs. I've worked a lot with helping other people get employed and there's ridiculous requirements. I worked as a case manager and we couldn't hire a case manager unless they had a car. I'm like, well the client can get to us on the bus, why can't we get to them on the bus? But you couldn't be hired unless you had a car and could drive yourself and these are ridiculous archaic structures that we need to really look at what do you want from the person, not what does the job description say, what do you want from the person, and can the person offer that, and does a person need assistance to offer it. Fine, get the right person, you know, a $50 accommodation is much better than having the wrong person who can drive, so, I'm done. [HABEN]: So yes just as Nicholas was saying, we need to review our job descriptions and ask ourselves what do we actually need from the individual in the role, rather than what have we traditionally expected from the person in the role, because there's a lot of difference. Maybe you traditionally had someone who drives around - if you need the person to move around that doesn't necessarily mean you need them to drive, they could get around through public transport or having a driver to transport them, or using rideshare, taxis. So every traditional expectation for an employee needs to be re-examined under the lens of, what's an alternative way of doing this? Can we be just as happy having these alternative methods used in in this role. So review the job descriptions, look for ableism, look for those assumptions you're making about how people should do the job when in fact they can do it in an alternative and just as effective way. I'm done. [SEVANA]: This is Sevana speaking, um just to add on to the points of Haben and Nicholas, I think on top of all of this it's critical for businesses who are creating these roles within organization or hiring, from talent acquisition to human resources to workforce planning individuals really understanding when we're talking about diversity, disability is diversity, and when we are looking to tap into our workforce and bring diversity to the table, how does this work, and then there in the entire process, how we tap into this talented pool of individuals who have so much to contribute too. I know for a fact, so many times I personally see a job description that says need to be able to speak, read, write, um with strong reading and writing and speaking skills, but I have engaged with many people who are completely able to hear and speak, and they don't necessarily have great communication skills. So it is critical to be able to say we're looking for candidates with great communication skills, that may vary in how it will show up. For many people when their lack of awareness in the systems of their organizations have in place is part of the issue that exists today and a mindset so oftentimes I have said, what was a job description look like if it was written by an individual with disability? So we don't have representations of people with disabilities working - we do, but they're not necessarily you know disclosing their disability, in human resources, in finance, in talent acquisition, and all across the organization, if there was people with disabilities represented and they had a seat at the table to contribute, job descriptions today across many organizations will look very different than you typically see. So I think another component of this work in terms of systemic perspective, many organizations today are discussing systems change from a racial perspective and feel we will be talking about this at some point, we will get to talk about the case for disability inclusion and I think that that's work that needs to happen in parallel. You know, all-system evaluation, not one or the other, or which one gets a priority, it's not disability community, it's one marginalized community that anyone can join at any time, so just because currently today you're, as an individual are not experiencing it, it does not mean you will not at some point in your life, so I think one area of opportunity that we have as systemic change across many companies is that you don't truly have to empathize or experience those to care about this topic and care about this issue, so I think that's a critical piece of integrating accessibility culture across the organization, and when we talk about the business case for disability inclusion it would be great we could get past talking about the business case, rather than focusing on what's the right thing to do, how are we tapping into this broader talent pool to make our brands and products and business operations more inclusive for everyone. I'm done. [NICHOLAS]: This is Nicholas. I'd like to - I love that and d I'd like to add something that has popped in my head while we were talking. I could hear say an employer listening to this going, oh now I gotta do one more thing, I gotta look at it through one more lens, and really it's not an additional, it's not instead of, if you looked at the job of what do I want at the end what is the purpose of this job, and what is necessary to actually accomplish this job, and started at what do I want to help my business move forward, then individuals would have the ability to be more expansive with how they can carry that out, and there could actually be someone with a disability or not that can actually look at that job differently and accomplish it in a more effective way that would actually help the business, as opposed to a person who's been doing it a while and they're like this is what the job takes, right. What is your end goal, and if you started a job description at the end goal and allow the individual to tell you how they would achieve that goal, you would get more of a diversity within the disability community, you would get more of a racial equity because we know there's inequity in education, etc, there's a lot of different ways so it's just something I saw an employer going, one more thing I have to do - no, stop looking through all the lenses and look at what are the end jobs, with the awareness that Sevana was talking about it, would be a very different world. I'm done. [MOYA]: Thank you for that Nicholas. I think it's very clear that we're needing that very different world now and so it's just a matter of how we get there. We're starting to see COVID protections are being lifted, people aren't wearing their face masks, widespread testing and remote work are starting to be rolled back, and you know, we have leaders saying that the pandemic is over. How is this leaving disabled workers behind? [HABEN]: Haben speaking. Disabled workers are very diverse, there are some disabled workers who are celebrating no masks and who don’t believe COVID ever really was a thing. And then there are other disabled people who are at risk of losing their lives if they catch COVID or if they catch COVID and the healthcare system decides not to give them quality of care due to deeply systemic medical ableism. So there's a lot of diversity within the disability community, lots of different views on masking and vaccination. I do feel a lot of disabled people, especially those who are immune compromised are frustrated with many people acting like the pandemic is over and many people no longer masking, especially on transportation and in large group public settings because it puts disabled people who are immune compromised at greater risk.
And disabled people should be able to move freely and attend these these large gathering events and be able to take public transportation without putting their lives in danger. It's also really important that as we move forward, hybrid virtual options continue to be options. There are some organizations that have stopped doing virtual options and are only doing in person and that excludes people who would not be able to attend otherwise, so we've learned a lot of lessons in the pandemic, hang on to that wisdom, don't abandon that wisdom now! I'm done.[NICHOLAS]: Thank you so much for that, this is Nicholas speaking I am someone who has a compromised immune system and it scares me. I still can't I'm not comfortable to go to the grocery store um where I live wearing a mask actually causes me to be a target, a political target where I could get hurt, to be very brutally honest, and as a small trans man with a disability I have enough targets, um so wearing a mask, I get harassed. I just had to travel for my job. I should not have to put my life at risk to do my job um but I needed to go on a plane and there was very few people wearing a mask and so it is it's - the belief structure that this is over, it's not over, this virus did not go away because we became tired of it. This virus continues and there are those who did um acquire COVID - myself twice - who now are dealing with long-haul COVID where I'm having challenges with my memory, my fatigue, it has expedited my disability by probably 10 years and I feel like I can't share that because then, again, I'm weak, I'm not capable, and we do have to hold those lessons because we’ve learned so much. People with disabilities are often isolated from the rest of society and when the world shut down for brief periods, people without disabilities got a taste of what it meant to be isolated. They have to remember what that feels like because there are still people with disabilities that has been their whole life, it has not just been two and a half years, it's been their whole life of non-inclusion. We learned how to communicate we learned how to pivot very quickly and become a truly virtual world. And now we can't just let that go because not only did it create an opportunity for us to all talk to each other but the technology of virtualism, the technology of sharing, actually created a more inclusive communication. People who never could go to a conference before could go, people who were never part of a conversation suddenly had the opportunity to be present because they were at home with Zoom. We have learned we can work differently and we can't return to quote normal because the normal didn't work. It wasn't, oh goody you got to wear your slippers while you worked - for us it's a little bit more involved than just I get to wear my jammies and my slippers while I work, right, it's I now get to work. So I'll be done there because I can go on, so I'm done. [SEVANA]: To add to that uh Nicholas, I'd love to talk about uh what we can we cannot do before. For me personally I thought it was really fascinating to see when masks became a widely used request among everyone in the early stages of pandemic, many people with hearing loss would complain about their ability to communicate and frustrations with masks. And I realized it was never about the masks, it's because people with hearing loss have always taken on the full responsibility of communication the entire time, and now people who were wearing masks were beginning to empathize and understand because they who could hear are struggling with hearing and conversation, and it challenged people from just removing their mask and saying can you read my lips because for their own health and safety they did not want to remove those their masks. Well so what it did it changed this behavior of I'm gonna write, I'm gonna gesture, I'm going to use assistive technology, texting, I'm going to tap on my phone, and so for me I think the silver lining here was people start to learn to understand what shared responsibility in communication looks like. And as now that masks are not widely used I see more people continue with those behaviors and habits instead of falling back on like oh yeah can you read my lips again, and um for me personally, going from an in-office world to a 100 percent remote experience was extremely positive because I was all of a sudden didn't have to worry about what was that little huddle that was happening at the end of the office, what was that water cooler chat that was happening in the kitchen that I was missing out on, and those are moments that you get to know people, build relationship, and you're missing out on information. So now that we're going to a hybrid model more and more companies are doing you know half time in the office come back and um continue work remotely or 100% remote. One thing that I - it's a new topic of conversation now that leaders need to become more aware about the proximity bias. It is known that many times leaders have a tendency to prefer and show favoritism or give preferential treatment to employees who are closest to them physically. This adds another complexity of layers, so we've been fighting so hard to get access to a job, so remote now is giving us an opportunity to enter the workforce and now I'm in the workforce, now that I'm contributing to the success of the organization, now I have to figure out how to navigate this proximity bias so it doesn't hinder me from my development in the future. What I love about my current role at Aira is that every single person across the organization is remote and we're placed all over the world which creates just equal access that I don't felt I'm missing out on a proximity bias in addition to my ability to grow and contribute to the organization, so I think many of us are we are going back to work - it's made it really clear after the pandemic, when there was a survey done and research and studies showed that 80 percent of people wanted to continue to work from remotely from home and we need to start looking at a remote work more like an assistive technology versus, it's a preferential choice of what that individual wants and does not want. It' so critical to allow people and empower them on their terms, allowing them to continue to choose a work space that meets their needs. It's really known that people of color and people with disabilities continue to experience ableism and discrimination at work so when you're in an office environment, an engagement that you have, the interaction that you have with people - going to work remotely kind of creates the protection for you that you don't have to be exposed to those things on a day-to-day basis, and remote work is doing wonders for the community, those who can access it, and I think it should be the norm or at least given a continuous option if someone chooses to work remotely, that could be something that they choose to do as long as they want to. So continuing empower the workforce on their terms versus making decisions for them. [ASHLEY]: Yeah absolutely, I think you all bring up incredible, incredible points about there are so many lessons that we have all learned over the past two and a half years that it's been since COVID has started, and it's not about moving past all of that, it's about moving forward with that knowledge and creating a more inclusive and accessible society for people with disabilities, because for so many years that hasn't been the case. And I would love to also hear from you all, what has surprised you the most as you have navigated employment and your career development as disabled people? And I would love to start with you, Nicholas. [NICHOLAS]: This is Nicholas, one of the things that's kind of - kind of shocked me and quite frankly upset me is this hierarchy of disability of how internal discrimination within the disability community, and how you know with me having not apparent disabilities, I've been told I wasn't really disabled, I haven't had the challenges of somebody who perhaps is utilizing a wheelchair or has a sensory disability, and I've been treated like I don't belong. We do this a lot within the mental health community, a lot of people in the mental health community are like I don't have a disability, right, and people you know afraid to admit they had a disability. I did not admit my disability until I was in my 40s and well into my disability career um despite the fact I was born with it and it is progressive as I age. It just it shocks me that we have this hierarchy that you know someone's better than someone else because they have a more significant - I always hated that word, significant disability, any type of disability or challenge is significant when you're experiencing it um you know um even if it's not directly related to a disability any challenge is significant if you're the one experiencing it. So that is the part that's kind of shocked me is that belief structure that that internal fighting. I do disability benefits and one of the only disability benefits that is different um is for people who are blind, for blind people, and I constantly get asked why and I’m like, better lobbying! But really what it is that we have such an internal fight of my disability is more important than yours that we don't work together to actually create a more inclusive community, and not only does that surprise me, it saddens me deeply. I'm done. [SEVANA]: So for me, what really surprised me, but didn't surprise me, is how often individuals determine my skill and my ability based on the fact that I'm using my voice as a deaf person, so because I use my voice, I must be smarter, I must be more talented, and that was like a you know stereotype that I had to deal with pretty frequently. The other component of surprise for me was I was invited to be at the table when it was an opportunity to showcase the organizations that were committed to disability inclusion, to be able to tokenize and say I'm checking the box, I have this deaf person, so that means I'm doing my job, that was another component of a surprise on the journey. But what I learned most importantly in this, my 20 year of career navigating, is how critical it was for me to be self-aware and be very clear about my strengths and opportunities, because I had to do two things: I had to well, break down the stereotypes of what a deaf person can and cannot do, on top of that uh prove that I am competent, smart, capable of demonstrating the job duties, and based on that I learned it was so critical for me to be able to say, here is how I contribute to the organization's success, assessing where I had opportunities, and actively working on those opportunities, because there was also sometimes the experiences of not getting clear and direct constructive feedback because, oh, poor people with disabilities, they're trying their best, we have them here, let's check that box and this is where you're gonna stay. And many times, I had to explain about what was possible and what actually made me more qualified than a non-disabled individual in the application process and the work. But you know we all know that creating awareness is half the battle, and once you can continue to educate about awareness on this topic, it's not easy, it takes a lot of emotional talks, you sometimes want to be able to enter the workforce, do your work, and end your day just like anyone else and not having to educate and advocate for everyone, but I've realized in this journey as well as every time I became exhausted with overexpending on an advocacy component, I had to remember that I wanted the future generation to have better experiences than we've had, so we - I took responsibility to continue that level of awareness. With awareness comes intentionality so the more we continue to educate, the better experiences will be, so I'm optimistic about the future generation who are today using social media such as TikTok and Instagram and stories on Facebook to truly showcase their contributions and change our mindsets and attitudes. [HABEN]: Haben speaking, I absolutely agree and have had similar experiences of people making assumptions about me based on my voice and the fact that many people associate clear speaking with intelligence is ableist and it's deeply hurtful for people who have speech and communication disabilities, accents, use computer assisted devices for communication, there's a whole list, very very long list of different lived experiences that are hurt by this ableist bias. So when I encounter it I try to use my privilege to remind people, this is not right and we need to create spaces for all different kinds of voices, whether it's a voice with an accent or if someone is signing or using augmented communication. Another thing that has really surprised me in my work as a disability advocate is the expectation that disabled people can only be white or only white disabled experiences deserve advocacy. There have been many times when I've asked a disability organization, we need to talk about Black Lives Matter, we need to talk about disabled people of color who are experiencing multiple forms of oppression and the response is often, we're working on disability issues. There are disabled people of color, our issues are also disability issues, but racism and ableism often intersect and unfortunately this also comes up in disability organizations, so that surprised and upset me and that came up a lot during the pandemic. I am done. [MOYA]: Yeah, thank you so much for sharing that. Is there something you wanted to add Nicholas? [NICHOLAS]: Yeah I mean what I'm hearing is here we are trying to do our jobs and the exhaustion of how to do another full-time job of educating not only our employers but the world and society in general of who we are. As Haben said, we can't just check a box, we can't just be one thing, we must look at the full picture of a human being, we are not just disabled people, I am not just a person with a physical disability, right, I'm not just a trans man, I'm not just etc etc etc, and that's where we can look at the social justice, the social impact of inclusion and we must look at that inclusion very differently, we can't just look at our own lens right. But we can't fix all the problems at the same time, and so one of the things that really I see a lot is is this siloed approach not only because of race, disability, et cetera but again back to that silo of your disability versus my disability. And that's why we don't have inclusion. I'm done. [MOYA]: Absolutely. Ultimately what disability justice teaches is that if we are listening to and really attending to the needs of people who are the most marginalized in a space, then everyone benefits, as opposed to you know, when we just cater to the needs of the loudest, whitest person with a disability in the room, because that only benefits them and just amplifies the hurt. I want to make sure we get to our last question, which is, for many people with disabilities, accommodations can make it possible to work, but not everyone has that experience. So if equity means everyone gets what they need, does that mean everyone needs to have a job? If not, what needs to be done to better support disabled people who are not able to work? And I'll go ahead and start with you, Nicholas, I know you have strong feelings about this. [NICHOLAS]: Yes I do, this is Nicholas. I am a strong believer of employment first philosophy, and that employment first philosophy is that all people with disabilities can work and work should be the first opportunity given to all people with disabilities. We shouldn't have to prove it, it should just be the given opportunity. Now I know that some people will say, but you know my disability is significant - by the way, I hate that word again, um but it is about the limitations of our society, not the limitations of the individual. The individual is able to contribute, people with disabilities we are able to contribute to society, and if we're able to contribute to society, which we are, then we can actually work. The challenge has been that we look at what is work as one particular thing, we don't look at the diversity of the skills and gifts that people have and what that can actually create. I always talk about, each person has a skill, a gift, something of worth to offer, now let's figure out how to help them make a profit on it, that's called employment. And so I know people who do not speak, who do not have the ability to speak, and they're public speakers for a living, I know lawyers who don't speak who utilize you know only their eyes to be able to move their equipment and they have people who speak with them and have personal assistance, it's about looking at what is necessary to support each person in their dream, not, this is the type of job person with a disability can get. I often get that, who hires people with disabilities? Everyone hires people with disabilities when they see that they fulfill their job needs right, so it is about everyone has the opportunity, it is about though how our society looks at it and puts those particular barriers up that we talked about earlier about what is a job accommodation. I work with helping people get work and I've worked in that position and vocational rehab may look at somebody say they're unemployable - they're not unemployable, you're just not willing to look at it differently, you’re not willing to stress your job to take that challenge on your job to look at a perspective differently of what this person can contribute. Moya, you know I can go on this for days so I'm gonna stop there and and - bring up well I'm not gonna stop there, I lied, I'm gonna bring up the second question, which was what do we do for those who can't right. Because I I know that the discussion will be about those who have limited hours who have limited uh um ability to work simply for - you know for me, I know that sometimes I don't have enough energy to do an eight-hour day, so how do I do that, to be able to meet my needs and that really goes back to, again, a systems change. We have a system that has a minimum wage of $7.25 on a federal level, that is not a livable wage, and we have this inequity of different states having different belief structures of what is a livable wage, when we have Medicaid and equity when one state can offer Medicaid and another state doesn't offer Medicaid um with a different resource limit, we put income limits on people that then keeps them in poverty, and we cannot keep people in poverty and make them hurt themselves to even try to make a daily living. So I'm going to stop there for real I'm done. [HABEN]: Haben speaking, all three of us have found and experienced employment. A big part of the disability rights movement is nothing about us without us, I think it's not fair for us to make decisions about disabled people who have not been able to find employment given that we would be speaking for people very different from ourselves, and it's important that they be part of these conversations regarding how do we create a new system, a solution, for people who have not been able to work in this very ableist and - system with so many other barriers in addition to ableism. I'm done. [SEVANA]: I just want to add on you know Haben and Nicholas made some great points. I also want to add a lot of these perceptions start from the top to bottom. Oftentimes we try to make a systemic change from bottom up and that's really challenging and so the perception of what is considered a workforce or a talent or how to really capture the market - it starts from the top. I'm currently reporting to a CEO who's every day, advocating for this despite not having the lived experience, you don't need to have the lived experience to empathize and see the need and the value of the disability community contributing to the success of an organization, and it's really life-changing experience to not having to build a business case on what's possible and that everyone needs to be able to work, it makes a huge impact positively on someone's work environment where you come in and you know top down leaders are committed to those efforts and see the value. Unless someone chooses not to work, that's a personal choice, but there are always there's always a possible way someone can contribute to their organization's success. [MOYA]: Thank you for those thoughts, you know I think especially as we are dealing with this huge wave of people who have had COVID and are now dealing with long COVID, we're gonna face this question more and more, so I think there's some really powerful truth in what you're all saying of, one, we have to make it possible for people to work, and two, we also have to make it possible for people to not work, because we all need to be able to be housed, to have food on the table, to have our needs met regardless of what's going on and I think those things will really help us to be able to access those talents and skills that we all know are there. [NICHOLAS]: So this is Nicholas, you know there's so much systems change that needs to happen, we're living in a very imperfect world and when we start looking at the whole of it, the holistic approach, we'll realize that by inclusion we're actually bettering all of humanity as opposed to just my personal life, and we really don't have to do too much differently if we look at things that way, because it's about who needs to be there, how big is my table, and if it's too small and everybody's not there, then let's just get rid of the table and get everyone to share and move this forward. We look so much you know at the political aspects of employment, when you really look at it it's very political and you know Social Security reform is necessary, straight out. Medicaid is necessary, all human beings deserve dignity, and so we need to be able to look at it that way. This employment to me is truly a social justice issue across all types of humans and that's why I came to this work is because of the social justice aspect, and I truly believe that for people to be fully inclusive in society they need to have the means to do so, they need to have money, and so we have to be able to give people the opportunity to make the choices that work for them and those choices should not be based on basically trying to survive. They should be based on choice, right, people shouldn't have to work multiple jobs to make their means, and people shouldn't have to go on benefits if they can go to work, it’s societal barriers that are in the way and so if we can break down and look at who do we want in the workforce, what do we need, personal belief - we need everyone, we need everyone to contribute and if they choose not to contribute through actual employment that's their choice, but it shouldn't be their choice because the system's in their way. It shouldn't be their choice because of you know just basic survival. So when we talk about employment first it's not that everyone has to work everyone has to have the opportunity to make that choice for themselves. I'm done. [ASHLEY]: Absolutely, and I think that's an amazing point to end on, I think that’s a great point you bring up, that systems change, that is what we so desperately need and I think that all three of you are doing such incredible, incredible work to make that a reality, and we obviously still have a long ways to go, but I think that this conversation has been a great step in that direction of, you know, fostering that mindset of yes, we need systems to be completely transformed and I think again over these past two and a half years during the pandemic we've learned that now more than ever that that needs to happen. So I want to thank you all for this amazing thought-provoking conversation, this was so amazing, I learned a lot just listening to you all so thank you so much for that, and I want to thank you all at home as well for joining us for today's episode of The Adjustable Table. You can find transcripts for this episode in the description box down below, and if you would like to join us, our next episode we will be discussing healthcare access with the wonderful Imani Barbarin. So thank you all once again, and I hope you have a wonderful day!
Thank you to:
Panelists: Sevana Massih, Nicholas Love, and Haben Girma
Moderators: Ashley Inkumsah and Moya Shpuntoff
Producers: Ashley Inkumsah and Moya Shpuntoff
Editing: Moya Shpuntoff
Special thanks to:
Carrie Griffin Basas
Carmen Daniels Jones
Thank you to Wells Fargo for your generous support of this series and your long-standing partnership with WID!