Move To Include
Deconstructing Ableism: A Community Conversation
Special | 48m 14sVideo has Closed Captions
A discussion on ableism & inclusion with disability rights activists & community members.
Starbridge Inc. and Move to Include, a WXXI and Golisano Foundation initiative, convene an important community conversation on ableism and inclusion. This panel discussion features nationally recognized disability rights activist, Imani Barbarin, moderator Jeiri Flores, a Rochester-based disability rights advocate, and local community members who share their own lived experiences.
Move To Include
Deconstructing Ableism: A Community Conversation
Special | 48m 14sVideo has Closed Captions
Starbridge Inc. and Move to Include, a WXXI and Golisano Foundation initiative, convene an important community conversation on ableism and inclusion. This panel discussion features nationally recognized disability rights activist, Imani Barbarin, moderator Jeiri Flores, a Rochester-based disability rights advocate, and local community members who share their own lived experiences.
How to Watch Move To Include
Move To Include is available to stream on pbs.org and the free PBS App, available on iPhone, Apple TV, Android TV, Android smartphones, Amazon Fire TV, Amazon Fire Tablet, Roku, Samsung Smart TV, and Vizio.
(upbeat music) - [Host] Starbridge Incorporated and Move to Include, a WXXI and Golisano Foundation initiative, convened an important community conversation on ableism and inclusion with nationally recognized disability rights activist, Imani Barbarin.
The following panel discussion was moderated by Jeiri Flores, a Rochester-based disability rights advocate and included local community members, who shared their own lived experiences of ableism.
Please stay tuned after the broadcast for resources and information on how you can join the continuing conversation on inclusion and accessibility.
- My name is Imani Barbarin.
As discussed, I'm a disability rights and inclusion activist.
A brief image description of myself tonight, I'm an African-American woman, plus size, I have a bob of dreadlocks and I'm wearing a red and blue knit dress.
- I'm Christina Eisenberg and I am the Director of Employment Equity at Starbridge.
- Good evening, I'm Tabby Anvari.
I am the managing director of FACIEN.
It's a marketing company that does services for startups, and more proudly the parent of an adult that I would like to call with very unique abilities.
The state may have a label for it.
I have just the privilege of walking along that learning process with her and she is in her 30's and this has been probably the most magnificent transformation of our lives, learning alongside her how to navigate.
- [Jeiri] Thank you, Carrie?
- Hi, I am Carrie Baker.
I work for Strong Center for Developmental Disabilities at URMC.
I wear a bunch of different hats there.
I do some education and some training.
Actually lots of education and training for medical learners at all levels, so med students and residents.
And I also direct something called The Family Experience, which I have the privilege of matching families in our community and people with disabilities to these medical learners to be able to share their experiences.
It's kind of an hour in the day of a life.
And I also have two daughters.
They're 18 and 20, almost 21, and my almost 21-year-old has Down Syndrome.
- Thank you, the first question I'd like to start with, and I like to ask everyone this question is, you know, how does ableism impact your daily life or that of your adult child's life?
What does it look like?
What does it feel like?
And we can start with Imani and then trickle down to everyone else.
- I think for me, ableism most presents itself in the inability to move as freely as I would like.
I do drive, I do have a lot of access to transportation, but every single day when there's inclement weather, when there's, you know, a sidewalk turned up, it's difficult to get around.
And then you also have the interpersonal like interactions where people are saying out of pocket things and talking about how if they were you, they'd kill themselves or if they had to live your life, they would never know how to exist.
And a lot, like I said before, a lot of it reflects from history, like our history as disabled people.
Also in medical settings, doctors always look for the adult in the room, when I'm the adult.
And so, yeah, like there's a myriad of different ways it manifests itself.
But I think like most often I think about the difficulty navigating space or like the unknowns, and then also the ways in which people either try to speak over me or speak to me like my life is so extraordinary that it shouldn't actually be able to exist.
- I think that's one of the most difficult parts for me, right?
When people are like, "Oh, congratulations."
And I'm like, "For what?"
You know, there was one time where like me and my friends, we high fived each other 'cause we put on pants that morning.
Like, you know, I was confused on where the congratulations came from.
I didn't know.
I had just facilitated a whole training and it wasn't congratulations 'cause I did that.
It was congratulations 'cause I was in the room and I was like, "Oh, okay.
"But I also made this curriculum, bro."
Like, so like there was different levels to that.
And I think most often for me, something that you said is like the everyday occurrence, right?
Where people don't see it, don't feel it.
So like when I finally be like, "Oh, no, "like, you were being ableist," and I blow up, people are like, "Oh, no, it wasn't that serious!"
Yes, it was, because there was 15 other times that I didn't say nothing.
That this one time, like, it was just too much for me.
And I think that shows up in restaurants and particularly I think it's really funny, I'm like the president to my family.
Like I run them kind of, and my little brothers always have a hard time when people defer to them, because they defer to me.
So they're confused at the whole exchange because they're like, "What's happening here?"
Right, so like, "Oh, what does she need?"
And they're like, "What?"
It's a pause because they don't know, like that's not a question, that's not something that they're ready to answer.
So I relate to you exactly how you're saying that.
Christina, we're gonna go to you with the same question.
- Sure, so I'd, you know, very similarly to Imani, it definitely presents itself in the forms of other people really not recognizing that I can answer questions for myself, that I have the lived experience and the knowledge myself to be able to advocate for myself, to be able to communicate my needs and that those needs should be really listened to and that I should be part of the planning for those, you know, kind of what lies ahead.
So I think that it definitely presents itself that way.
I also feel like it is something that pops up, probably I would say on a daily basis, where people are celebratory, like you were saying, that they celebrate the everyday life things that you might do.
So people will sometimes, you know, be very intrusive if my husband and I are out for a walk and we're both wheelchair users, and they'll sort of make, you know, the ongoing joke, no matter who we run into is, "Oh, who's faster?"
You know, and "Are you guys racing?"
And it's just a simple walk or, you know, celebrating that I'm driving.
"Oh, that's so great, oh my goodness."
And I can't tell you how many times I get blessed in my life.
And I grew up in a very religious household and family, and so even within my own family construct, the idea of just general daily activity for me or general, you know, I'll use the term normal, future didn't really exist or wasn't really at the forefront of their thoughts.
- Thank you, I get blessed in parking lots all the time.
I definitely know what that's like.
Tabby, I'll go with you with the same question.
- That's a wonderful question.
I think in some ways I was being prepared for, because when you come to United State as a first generation immigrant, you have one way of perhaps navigating common qualities in communities, common relationship vocabulary, language interactions.
So in some ways I think I was being tenderized and prepared for when our younger daughter was born.
And so again, to be able to not only see it from her point of view, but also become very sensitive, because she has very limited expressive language.
So to navigate almost intention versus vocabulary, body language versus reaction, it all became a fantastic navigation learning process, which we're still part of.
So it's an ongoing learning and doing, and doing and learning.
- [Jeiri] Thank you.
- I love that answer.
And I agree, I think that the ableism that I see, her name is Ella, my daughter's name is Ella.
Ella encounter is communication mostly.
She doesn't, she has words, she doesn't always use spoken word to communicate.
She communicates in a lot of different ways.
And always being someone who likes to communicate and probably communicates too much, I didn't realize the link in people's minds between communication and intelligence, and really assuming that people are less than if they don't use spoken word to communicate and they don't have anything to say and they don't wanna be engaged and they don't even wanna be there.
So I think that that's how I witness Ella experience ableism mostly.
Also because she has Down Syndrome, there's a lot of myths about Down Syndrome, and the one that I find the most odd is that Ella should always be happy.
That is her only emotion that she's allowed to emote and possess.
And if anything else is happening that there must be something terrible, instead of her just being a human who's having an emotion.
- And Ella has lots of emotions.
- So many emotions.
- I think if you give her a chance, it's hilarious to watch, because she don't like you.
So there's just that.
(both laughing) And she shouldn't have to like everybody, that's not her.
You know, I don't like everybody.
As you all personally navigate your services, but you know, as you help your kids navigate their services, what are some of the ableist practice and policies that you see, you know, that impact, you know, planning a future or even just, you know, planning your day to day?
So Carrie, I'll start with you.
- Oh, you're starting with me?
- Yeah.
(laughs) - Jeiri.
You know, I think the one in my forefront of my mind right now because we are navigating adulthood.
Well, Ella's navigating it, and we're trying to help support her, we're doing a bang-up job.
But I think what I'm seeing and what I find really fascinating is, and this is a hot debate and a hot topic, I hope I don't set into flames, but looking at guardianship and looking at supportive decision making and looking at what a hot topic it is for families, but also comparing and contrasting what happened with my 18-year-old that doesn't have a disability and Ella.
And so my 18-year-old, once she turned 18, HIPAA was like, "Nah, uh-uh, you don't know anything."
And what is, FERPA?
Is that it?
The educational one.
So she became a freshman in college and college is like, "No, uh-uh, "we can't even discuss, too bad if it's your dollars, "we don't care, we're not discussing anything.
"She is protected, she is 18."
Ella turned 18 and it was every pivotal person in her life.
So care coordinator, and educator, and healthcare provider, you have to get guardianship.
You have to be her voice, you have to protect her, you have to support her.
And comparing and contrasting that.
And, you know, I'm not gonna weigh in on what I think people should do or shouldn't do, or what we are doing.
But I just find that in society and that line of thinking for professionals and how slowly that is moving, I find that very interesting.
- Christina, we're gonna lobby that to you, the same question.
- Sure, so I think navigating the system is hard no matter, you know, whether you have a disability or not.
But I also think there is an extra layer there when you have different disabilities.
So some of the practices and policies, you know, I work in the employment sector and so, and also for a nonprofit, and I'm blessed to be at a nonprofit that celebrates inclusion and belonging.
But unfortunately that's not always the case.
And so I think, you know, COVID taught us that there's opportunity for us to look at work in different ways.
One being the opportunity and the benefit of remote work.
And so from a policy standpoint, you know, and in terms of ableism, historically we've thought of work as being in the office.
People have to be there nine to five, whatever the case may be.
COVID sort of opened people's eyes, it seemed, to the fact that that doesn't need to be the case.
And that, in fact, people can be more productive or can be productive at home or in their own environment.
And the same is true for people with disabilities.
And so I think that those are some examples that, you know, hopefully will continue to change and evolve and we'll see more of the remote work options and hybrid meetings such as this.
And thank you for this to be able to provide the hybrid opportunity is amazing.
- Tabby?
- I think many examples have been given, and mine mirrors the same as every one of you have gone through these systems.
And whether it's educational, health system, organizational, navigation, we all have the same narrative.
One of the things I have found is that if I approach it from the point of view of contest and conflict, I'm perpetuating the process.
So one of the examples that we have, we're trying to learn more about is how to elevate the questions.
So when we are coming to, at any given time, a blockage, it can be from, "No, she cannot do this," and thank you for naming Ella, our young adult's name is Teeva.
And Teeva in the ancient Persian language means fearless.
How little we knew that she needs to become fearless.
Was to really think about the question that is then posed back to the, whether it's an educational system, healthcare providers, or organizations.
Because we also learned that these are the experts, they may have forgotten for a moment their sacred duty.
They have for a moment have lost sense of how and why they started walking this path.
So we are learning how to elevate the questions so that our experts can touch base back into that moment of sacred and be able to have the creative thoughts that we all can benefit from.
So I'm not gonna repeat the examples, because we all have that narrative, but how can we shift the narrative?
- Thank you, Imani?
- Yeah, so I am somebody that left their job during the pandemic.
I was doing disability advocacy as a full-time job with an agency and then simultaneously doing disability advocacy through my online platforms and blogging, and my education as well.
And the hardest thing that I've been dealing with has been the cost of healthcare.
I pay anywhere from like $1,200 to $1,400 a month on premiums, copays, and things of that nature.
And so healthcare has become so expensive and at the same time, it covers less and less and less, and more things are being denied, more things are being caught up in the bureaucratic red tape of insurance companies.
And that's really kind of the hardest part.
And then like, as it pertains to questions in guardianship and conservatorship, one of the things that I think a lot of disabled people fear is asking the wrong question or the wrong person and being deemed unable to handle your own affairs.
And so constantly being under the pressure of being disabled enough that you deserve the support that you need, but simultaneously being quote unquote "capable enough" in the eyes of the person that you're speaking to so that you're not deemed incapable or put into a very, quite honestly, terrifying situation.
- I think that from everything everyone has stated, you know, I look at it and reflect at my own life, and I just bought a $100,000 car, y'all, not because I wanted to, not because like this is, I got some luxurious like top of the line, like it's just a Toyota.
Like it is just a very basic car.
And I think of the ways that society puts itself together and all of the things that we need now, you know, I need a car, right?
It's not that I want one, like, public transit is not the best necessarily for folks who are physically disabled.
And I think of all the other decisions, like my parents bought a house, they didn't even understand how to speak to the people at the bank, 'cause they didn't speak English, but they just knew they had to buy a house.
This is what the rhetoric was at the time.
You have a disabled kid, you buy a house, they're the first people in my family with a house.
So this is also, they're learning and growing as a unit.
But from everything that everyone has stated, I think it's a lot of tough decisions all the time.
A lot of big decisions all the time.
When I signed the loan for my $100,000 car, I wanted to throw up, because it was very hefty.
And if I was to die tomorrow, those people who are left with that loan, like that's a huge responsibility when it shouldn't have been this expensive, right?
I understand that we're in a recession, I get that, but it just still don't need to be this hefty, especially when we look at the way employment works and we look at the way, to me, so one of the bigger issues within policy and practice is that when we're talking about supporting employment, there is no funding for transportation.
There is no real funding for educational avenues so that you can also have upward mobility within the system, right?
So there's a lot of funding for different things.
I can get a job coach, but that doesn't mean that it's getting me a job.
I can't get a degree, like that doesn't mean that it's gonna lead me to a fruitful future, right?
So there's a lot of guessing and questioning and making big decisions for your family members or for yourself and just hoping that you made the right one.
And then the thing is that the consequence is huge when you made the wrong one, right?
So Imani, you're paying $1,200, that's crazy.
I waited six months before I got a battery replaced 'cause I just knew it was gonna be $1,200 for just the battery and you know, my van, the door wouldn't even open and I waited as long as I possibly could before I bought a new van, because I just couldn't imagine how, what it would be like to go approach a place and be like, "I don't have no money but I need a car.
"So can we make this happen?"
- I don't mean to interrupt.
- Please.
- But like, I'm terrified of replacing my car 'cause I don't even know what the procedure is!
- No one knows!
- As somebody who can't live without my vehicle.
- No one knows, you just hope that you pick the right dealership.
(both laughing) I asked a lot of questions, the lady, she has a whole folder that I have to also keep in the car and so I had to ask a lot of questions 'cause I was also translating.
So I don't know if I picked all the best stuff, but it works and it's really cute and it smells good still.
(everyone laughing) But replacing it, just be ready to give a lot of money.
My next question, and I'm gonna start with Tabby.
When we look at the media, and we look at representation of disabled individuals, what do you think can be improved to challenge the current stereotypes that exist, right?
When you think of your daughter and you, if you envision her, let's say on an episode of "Grey's Anatomy" or something, right, you don't watch a lot of TV, you told me this before we started, but when you think about what you see and what is put out there, what do you wish was different?
- I think as far as media, I think all of us can agree that everything has to be changed.
(everyone laughing) So, but the aspect that really comes to individuals with unique abilities and disabilities is representation.
Representation, I think it was mentioned by Imani, beautifully, that true representation.
We do not need to, you know, make anything that is not there any less or any more.
So reading reality, I think, is going to be a capacity for all of us.
Whether it's at the level of education, at the level of healthcare, at the level of media, at the level of interaction, we need to be able to learn how to read the reality and then replicate it in the arenas that we are interacting with.
But I think all of these are not just sweet, you know, aspirations.
They require an attitude change because ableism, like every other form of prejudice, is a profound deviation from the standard of morality.
So in some ways we need to bring back the equilibrium of morality to include everybody, not just because of their label, not just because of what they look like or don't, but true morality, that is really a representation and reflection of humanity.
So media is not going to be doing that because there's no money in it.
So when we ask that question, I wish these answers were the kind of answers that are going to bring about change.
They're not, unless and until the first building block of society, which are families, decide not to support what is out there right now, not to buy in whatever it is.
Whether it's a product, whether it's an approach, whether it's an advertisement.
So it really, it cannot be that much top down.
It has to start from the grassroots.
And it has to be a population that says, "Enough, we're not going to do this anymore."
And again, this is not a overnight approach or a process, but I think each of you that are here tonight have made a conscious decision that it's going to be different tomorrow.
It's gonna be better and it's going to be more towards this morality that includes everybody.
- You just said something that really, so the movie "Wish" just came out, right?
And it's huge and it's cute and it's an animated film, and there's a character in the film.
So you make wishes, and the guy, the king of the kingdom, he uses these, he's a sorcerer, he uses these wishes and he's empowered by your wishes.
And my little brother, again, I've been disabled my whole life, and my little brother has been my little brother his whole life, and one of the characters uses a crutch to get around.
I'm not sure what her disability is, they didn't specify.
It's not even a thing about her, really, 'cause the biggest thing is she makes cookies and she's the main character's best friend.
But he says to me, and I just thought it was hilarious, he says, "Baba, do you think that her wish "is that she doesn't need a crutch?"
And I was like, Michael, out of all the things that she could wish, why would that be her wish?
Everybody's wish in the film is huge, right?
One guy's wish is to have influence over the next generation.
The other person's wish is to fly.
Like we're talking about pie in the sky, the biggest wish you could have.
Why would her wish be for her not to have her crutch?
And it's so funny to think about someone who has interacted with disability their whole life, right?
Like he's never not known disability.
It's never been not present to him.
And for that to be his first thing, but also like the first thing that he did was to buy the first figurine that he saw of this one character, right?
So like he's still like, it's so funny, he's happy that it exists, but he's also thinking that maybe she wouldn't wanna be different.
And I was like, but why?
Like, you know, and I had to highlight to him, like, Michael, that's ableist.
And he was like, "Oh, my bad."
Like, you know what I mean?
But it didn't click to him till then.
But I think something you said really highlighted to that, we have to be conscious of what we're ingesting and what we're choosing to pick and choose from.
Carrie, I volley the same question to you.
- I dunno if I have anything else to add, to be honest.
I mean I do you think representation is very important.
I think that representation of many faces with different disability, but also many faces with the same disability that represents differently, I think is important as well.
- For sure, 'cause one of my biggest beefs is that we see a lot of folks with Down Syndrome who happen to be white, as if Down Syndrome doesn't happen in other spaces.
Like as if there isn't black and brown faces with Down Syndrome, because that's just not true.
And Imani, Christina, is there anything you'd like to add to the question?
- Yeah, I think I'll just echo that the representation is key.
I think, you know, a lot of times when we're watching TV or movies, we're looking at someone depicting disability who oftentimes doesn't have a disability themselves.
So getting more individuals who actually have that lived experience to portray the roles that are out there, I think is really, really important.
I know as, you know, a woman now in her 40's, growing up, I never had that representation, and never saw successful people with disabilities, I wasn't surrounded by a lot.
So I think that that's huge for young people as well as adults with disabilities.
- Imani, is there anything you'd like to add?
- Sure, I think one of the most important things we need to start evaluating is how culture interacts with disability.
As you were saying, you know, it's really important for us to represent disability through multiple different facets and lenses.
I think that representation has gotten way better than it was when I was a child, but I still wanna see more dynamic discussions and representations of disability that kind of go against what we've always been taught about what disability looks like.
I remember like seeing my first advocacy talks, people would come up to me and be like, "I didn't know black people could get cerebral palsy."
And I'm like.
(everyone laughing) What?
Like what do you mean?
You know, and those things impact, like our healthcare interactions and interactions with people in the street.
And so I think representation is incredibly important, but also think representation that is dynamic is probably even more important.
- I would agree and I think equity in that representation, right?
Like, one of my biggest beefs with "Raising Dion," I watch a lot of TV, y'all.
His best friend, Esperanza, is in a wheelchair and Dion himself has magical powers and he like does a thing and he gets her out of the chair and she's like, is mad.
She's like, "No, like why would you do this to me?
"Like, this is not, like, I don't like this.
"Like I am cool with the way that I am."
And it wasn't about Esperanza being taken out her chair, it wasn't nothing like that.
I wanted to know who wrote the script, right?
Because like her, there was so much nuance in what she was saying and how uncomfortable she was by what he was implying, because, "Look at my magical powers, "I can make you different."
And she's like, no.
So who wrote this script to know that this could be a issue, right?
Because I want there to be equity.
I want there to have been a disabled writer who talked about this, not someone who speculated that this is how we might feel.
So I like did like a deep dive.
I'm trying to find who wrote it, and like who's in the beeline type thing.
Like I'm looking, I'm trying to see their Instagram like, did you steal this idea from your sister, because then you should have paid her.
And like, I was really going in deep and my friends couldn't understand that I'm like, "Well, there's so much nuance "to just the culture of disability "that you just can't talk about us "in a way without paying forward to that."
There needs to also be equity in that representation.
It can't just be like, "Ooh, look, we got a disabled body here."
If there is nuance, I want that person who created, who highlighted that nuance to have they monies.
Yes.
- Oh, just let you know, Esperanza has been doing multiple TikTok dances that go viral in her head brace where she's spinning around in it.
- Yeah, I saw her on TikTok!
- You should check that out.
- On TikTok, right?
She's so cute, I follow her on Instagram.
We have another question, and this one might be a little harder to answer, but what are some common blind spots when it comes to ableism, right?
That you see, that maybe it kind of just happens, and you're like, no one else noticed that this is an ableism that happened.
So Imani, I'll start with you.
- This is not a call out by the way, one of the things that, like, I hear a lot is like people's language.
People often use disability as a metaphor for things that are wrong, such as blind spot, or such as, you know, falling on deaf ears, or tone deaf, or crazy, or things like that.
I think that language perhaps really has the potential to shape our lived reality.
As a communicator, as someone who studies with communications, quite often we see disability used as a metaphor for things that have nothing to do with disability, but how people wanna impart upon somebody else how things are going awry or out of place.
So that really is a reflection of sadism and linguistic ableism, things like that.
- No worries, it wasn't my question, somebody gave it to me.
So it's definitely not.
(laughs) So whoever put that question in, y'all, that was on you, you lost five points.
No, but I feel the same when people say low hanging fruit, right?
I don't think that this is something we should be talking about, right?
Billie Holiday talked about it.
"Strange Fruit," when we're saying low hanging fruit, what are we really talking about?
And I think there's a lot of idioms that we use that we don't often understand the font, like what they're talking about and what they're really truly reflecting.
Anyone else kind of wanna highlight something?
- Next question.
- Well, Carrie won't say it, but I wanna highlight interactions that you have at restaurants, and I think that folks don't often think about this.
This is very small and slight, so Ella is selective verbal, right?
And when Ella wants to talk to you, it's up to her, you know, depends on the day.
Maybe she woke up and it wasn't the right muffin.
So she don't like you all day, but at restaurants, people don't ask her what she wants to eat.
And if Ella and I both are at the table, people don't ask Ella and I what we want to eat.
They look and turn to Carrie, and say, "Oh, what are they eating?"
As if we can't select what we want, as if Ella can't say cheeseburger or pizza.
And I think it's very small.
I think it's also where people put the check, right?
A lot of the times when I go to dinner with someone or if I'm going to lunch, no one ever thinks that I could pay.
And I think that is hilarious.
I don't have a lot of money, so I often don't pay, 'cause people don't think I have money.
But the billfold is never really placed in front of me.
And I think that that is hilarious because why not, right?
Like, it's not that it's placed in the center of the table, people often choose to specifically put it in front of other people.
And so these are small exchanges that, you know, a lot of people don't think too much about.
But, it really just, if you catch me on the wrong day, I got a whole attitude about it.
Christina, I don't wanna leave you out if there's anything you'd like to add.
- No, I think everybody covered pretty much what I would've said.
- [Jeiri] And so this next question.
Oh, sorry, go ahead, Imani.
- I just said I don't wanna pay the check either if anybody's volunteering.
- So I work with a lot of med students and they don't have no money, but it's always funny that when I meet with them out and about, they pay for whatever we're eating, if we're eating, if we're having coffee.
And I was like, I think it's hilarious, because you don't have any money, like you're literally in school.
But, okay, cool, go off, like, you got it.
So this last question is, can you provide any suggestions for working with boards or organizations who may not recognize ableism or their ableist viewpoints?
And so you can kind of tally off your suggestions, and so this is a free for all, whoever would like to go first.
- I can start us off.
I'd say training is a huge part of that.
Educating people on what reality is for varying disabilities, both visible and invisible disabilities.
Even that concept of disability not always being a visible thing, so to speak, that you see, and that you can automatically figure out.
I think that it's important for us to educate the community and others on those sort of assumptions that are made and make disability more of a comfortable conversation that people aren't afraid to ask a question or don't feel like there's a wall up.
- [Jeiri] Thank you.
- I talk to a lot of companies around disability inclusion and making sure that their spaces are disability friendly.
And I actually have the opposite problem where it's not that people don't recognize that disability is an issue, it's that they become too over enthusiastic to the point where they are demanding disclosure from people who you cannot or do not wanna give it.
And I think what's really important to impress upon people is that accessibility, like you were talking about, like your van costing $100,000.
We treat accessibility as an exclusive tool that only disabled people can use.
And we have all of these barriers, disclosing and declaring and making sure the right people know we have a disability, but in reality we need to be more radical about offering accessibility to everyone.
When we understand the perceptions behind why ableism impacts people's ability to identify as disabled and have a disability openly, when you put the onus on the individual to come forward, you're putting them in a really rough spot, particularly for somebody who is a person of color, who is a woman, who is queer, because that is yet another thing we will use to discount them or to isolate them.
And so it's incredibly important when we talk about ableism and unemployment, that we have a more radical stance than has previously been accepted.
And I understand, I know there are laws, there are regulations and things like that in place, but even just a simple question of asking employees, "What are tools that you think "could help you do this job better?"
Or is it, sorry, I'm using my words.
"What could help you better navigate the space "in which we've given you to operate?"
Things like that, like I said, not necessarily using the word accessibility, but just helping people understand that they are open to discussing the places and spaces where they are deemed weak otherwise for revealing a disability.
- I like that.
- Carrie.
I would like to perhaps also add that dealing with organizations and companies, one of the challenges is that they are in a tough spot between following what they have started and shifting towards a changing horizon.
The current social structures have never seen the diversity of human nature, the likes of which we are experiencing, including all abilities.
So the current structure cannot, in the best of their intention, address the questions that were raised so beautifully here and the concerns that are so real.
So in some ways, we're at an interesting time of trials and promises, of perhaps hardships and new opportunities.
So it does require us to be compassionate in our approaches to systems, because again, the injustices are real, but our current approaches to injustices have not brought about the changes that are long lasting.
So perhaps our collective desire should be how do we elevate the questions that can be become more comprehensive.
It's not about a segment of society, but it is about society.
It's not about a population, but it is about humanity.
And that will require us, going back to education and training.
Are we really thinking about human dignity, human nobility, human ability?
And then give expression to organizations that give the answers to that, right?
We cannot come up with an answer if our questions are fragmented, friends, right?
So this really requires us to come back to the table to spaces such as this, and continue to discourse, really discourse, but not from the point of view of pointing fingers, from the point of view of, "What is my role?"
I give you an example, it goes back to a previous question in a restaurant.
We walk into restaurants, and immediately I ask the person who's helping us, "What is your name?"
Because I want to make this a human experience, not transaction.
And when I order, even though I have to order on behalf of my daughter who does not have that expressive language, I say, "Miss Teeva would like to have so and so."
By the second times that we go to that restaurant, dynamics have shifted.
Something so simple can become a profound process.
The other one is a process.
Everything that we experience, beloved ones, goes through a heroic age, present company included, and then a formative age.
That's the tough one.
I think right now we're in that beginning of formative age and we're all feeling the pangs, right?
We haven't gotten to the golden age.
And let's not act like that's where we are.
Let's not have expectations that that's where we are.
We are in the formative age of this magnificent move forward to inclusion of human values.
So for me it's about that.
- Anything you'd like to add?
- I think that I would also just jump onto what everybody else is saying, that this really is a culture shift.
And I think it is definitely a marathon.
It's not a one and done.
So you can't just come in and have, you know, one training about X, Y, Z that has to do with disability, and expect everyone's minds to have shifted and changed and, "Okay, good, now we've got it.
"Now we're gonna act differently."
I think it has to be woven in every piece of whatever entity you're talking about, you know?
And I also think it has to be everybody included.
So I always use medical offices as an example, we spend a lot of time, at least I do, trying to shift provider ideals and the way that people are providing care, right?
So we're honed in on doctors, nurse practitioners, nurses, sometimes nurses, PAs, we forget people answering the phones need the same training.
People at the front desk need the same training.
If someone's experience from entering the door, and that they can actually get in the door and enter the door and have a smooth valued experience from beginning to end, we have to think about everybody within the organization.
- And I would just close this out by saying, "Put your money where your mouth is," really, right?
Like there's an organization who wanted me on their board.
I'm like, "My car's breaking down.
"You want me in this meeting?
"You gotta find a way to get me there."
They hired a bus, I thought it was hilarious, 'cause I'd never seen it.
They hired like this random bus that came to pick me up in front of my house and brought me to the place, and the lady was so sure that she wanted me in this meeting and I was like, "I can't get here.
"I don't have a way to get there."
And so, really, it's about putting your money where your mouth is.
What does your board look like?
What does your organization look like?
So change your hiring practices, you know, challenge the people at the board.
Don't have a special election.
Don't make a special position so that you can say, "Oh, but look what we did there."
Because the idea is that that one special position doesn't matter, right?
Like you're wanting a cultural shift, you are wanting something that's long lasting.
And if you're not willing to put monies and efforts behind it, then you're truly not being honest about what you're trying to do.
And it's really just performative.
I think organizations constantly, and boards, need to ask themselves, are they being performative, right?
Because are you truly doing what you're saying you're gonna do or what your bylaws say?
Or are you just doing it because this is the hot topic now?
I wanna thank everybody that has been on this panel today.
Imani, I wanna thank you for coming in from Philly.
Please look out on them sidewalks, 'cause y'all sidewalks is rough.
I'd never been to a place that the sidewalks and the streets were a mess, and Philly has won there.
Christine, I wanna thank you for being here with us tonight.
We have kind of surpassed our time.
I wanna close us out with saying thank you to everyone here in the audience.
And I just want you to continue to challenge your thinking, challenge your practice, and if you have questions, that's what social media's for.
Put it out there, somebody will respond somewhere, and continue to push the envelope when it comes to certain spaces that you're taking up.
That's the only way that we will be able to create change.
And with that, I will hand it over to Sarah, who is going to close this out.
(audience applauding) - Thank you so much, everyone.
Thank you to Jeiri, our phenomenal moderator, Imani, Christina, Carrie, and Tabby, our phenomenal panelists.
I am just amazed at the quality of the conversation and so many thought provoking questions that came through both in studio and online.
I'm so sorry we didn't get to all of your questions.
That just means that there's need for another event like this soon.
So please stay tuned.
We'll have more information on programming in 2024.
And again, thank you to all of our panelists, our speaker, our moderator, and to our team at Starbridge and WXXI for working with us on tonight's event.
Thank you so much.
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