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

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Ashley Inkumsah:

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

Ashley Inkumsah:

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

Damian Gregory:

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

Ashley Inkumsah:

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

Damian Gregory:

Yeah. It is.

Ashley Inkumsah:

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

Damian Gregory:

Yes. And I feel snug and happy. So,

Ashley Inkumsah:

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

Damian Gregory:

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

Damian Gregory:

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

Damian Gregory:

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

Ashley Inkumsah:

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

Damian Gregory:

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

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

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

Damian Gregory:

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

Damian Gregory:

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

Damian Gregory:

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

Ashley Inkumsah:

Right.

Damian Gregory:

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

Ashley Inkumsah:

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

Damian Gregory:

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

Damian Gregory:

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

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

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

Ashley Inkumsah:

No.

Damian Gregory:

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

Damian Gregory:

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

Ashley Inkumsah:

Yes. It sure does.

Damian Gregory:

You know?

Ashley Inkumsah:

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

Damian Gregory:

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

Damian Gregory:

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

Ashley Inkumsah:

Happy Hour.

Damian Gregory:

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

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

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

Damian Gregory:

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

Ashley Inkumsah:

Yeah.

Damian Gregory:

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

Ashley Inkumsah:

Mm-hmm (affirmative). Yep.

Damian Gregory:

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

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

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

Ashley Inkumsah:

Absolutely.

Damian Gregory:

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

Ashley Inkumsah:

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

Damian Gregory:

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

Ashley Inkumsah:

Yep.

Damian Gregory:

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

Damian Gregory:

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

Ashley Inkumsah:

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

Ashley Inkumsah:

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

Damian Gregory:

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

Ashley Inkumsah:

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

Damian Gregory:

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

Damian Gregory:

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

Damian Gregory:

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

Damian Gregory:

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

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

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

Ashley Inkumsah:

Oh, wow.

Damian Gregory:

Yeah. That was a lifetime ago.

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

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

Ashley Inkumsah:

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

Damian Gregory:

Yeah.

Ashley Inkumsah:

… and how relentless they were.

Damian Gregory:

And we take it for granted.

Ashley Inkumsah:

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

Damian Gregory:

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

Damian Gregory:

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

Ashley Inkumsah:

Yes. I have.

Damian Gregory:

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

Ashley Inkumsah:

It’s an amazing movie.

Damian Gregory:

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

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

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

Damian Gregory:

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

Ashley Inkumsah:

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

Damian Gregory:

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

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

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

Ashley Inkumsah:

Hmm.

Damian Gregory:

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

Ashley Inkumsah:

Hmm.

Damian Gregory:

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

Damian Gregory:

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

Ashley Inkumsah:

Mm-hmm (affirmative). Yeah.

Damian Gregory:

… did I answer your question?

Ashley Inkumsah:

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

Damian Gregory:

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

Ashley Inkumsah:

Mm-hmm (affirmative). Yes.

Damian Gregory:

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

Ashley Inkumsah:

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

Damian Gregory:

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

Ashley Inkumsah:

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

Damian Gregory:

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

Ashley Inkumsah:

Yeah.

Damian Gregory:

We do quiet a bit.

Ashley Inkumsah:

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

Damian Gregory:

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

Ashley Inkumsah:

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

Damian Gregory:

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

Ashley Inkumsah:

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

Damian Gregory:

Thank you.

[music]

Ashley Inkumsah:

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

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