Posts Tagged ‘Ableism’

Cathy Kudlick: From Denial to Director

Wednesday, January 27th, 2021

Image of Cathy Kudlick in front of a microphone
Happy New Year!

We’re starting the year off with centering the main goal of this podcast – providing that peer to peer support and information for those adjusting to blindness & disability.
To kick it off, I’m excited to have Cathy Kudlick back on the podcast. Last time we talked all things Superfest Disability Film Festival. This time she’s sharing Valuable experiences from her life that helped her move away from denying her blindness to using her interests and abilities to become Director of the Paul K. Longmore Institute on Disability.

She’s dropping gems for those who are currently struggling with their loss. Some really valuable lessons learned from her own experience. You’re going to want to hear what she has to say, so let’s go!

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Transcript

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TR:

Happy New Year Reid My Mind Radio Family!
My name is Thomas Reid, host & producer of this here podcast! Bringing you compelling people impacted by all degrees of blindness & disability.

Why you may ask?

Opening Mercy Mercy Mercy, Cannonball Adderley
— Applause
“You know, sometimes we’re not prepared for adversity. When it happens, sometimes we’re caught short. We don’t know exactly how to handle it when it comes up. Sometimes we don’t know just what to do when adversity takes over. And I have advice for all of us.”

TR:
Who better to get that advice from then those who have traveled that similar journey!

There’s no time to waste so let’s get it pushin’! Hit me with the huh!

Audio: Reid My Mind Theme Music

Cathy:
I’m Kathy Kudlick, and I’m director of the Paul k Longmore Institute on Disability at San Francisco State University. And I am also a practicing historian, which means I got a PhD in history.

TR:

I told you she’d be back!

Cathy was on the podcast with her colleague Emily Beitikss in September of 2020 talking all about The Superfest Disability Film Festival.

I knew I had to get her on when she mentioned her own experience with vision loss. Today, we’re focusing more on her story!

Cathy:
I was born totally blind with cataracts, at a time when they couldn’t really fix them very well. And so my parents in the first like, nine months of my life, basically, you know, kind of realized they were going to be bringing up a blind daughter, but they still didn’t give up.

TR:

Cathy describes her early experience with blindness as a Salmon swimming upstream, you know going in the opposite direction or against the current.

Cathy:

Yeah, it’s like I was going sighted instead of going blind.

At one point, I was seated on a chair, and my dad was taking a picture of me, and I reacted to flash. And so they said, Whoa, wait, there’s something that’s happening.

TR:

She was developing vision!

A family friend helped connect them with a prominent doctor who said he could help.

Cathy:

And he did.
When I was nine months old, they removed the cataract, my vision afterwards was still pretty darn crappy, as doctors would subsequently say, but you know, it was better than nothing at all, they said. And so I went through most of my life up until my teenage years with this pretty darn crappy vision

TR:

Additional surgeries gave Cathy more vision, but as we know, vision is complicated.

Cathy:

My brain didn’t learn when I was young enough to make the association. I can stare at something for quite some time. A lot of people will make that connection in five milliseconds, and I’ll be sitting there Okay. Is that a dog or house? Eventually, I’ll get enough input and enough clues and say yeah , it’s a house. Then I’ll fill in all the rest.

In the process of all this, I have Nystagmus, which is a muscle thing where the eyes basically jump all over the place. If I could just hold them still, I’d probably have pretty decent vision, but I can’t.

They say that Nystagmus later in life, it’s a lot, lot harder. And in my case, it’s all I’ve ever known.

— Music begins – calm melodic beat —

TR:

We often think it’s a natural process to adjust as a child, but some things require more attention.

Cathy:
I inherited my condition from my mother.

But society being what it is and prejudice being what it is, and denial being what it is. My mother did not want to admit this to me.

One of my big journeys in life is kind of reconciling well, who I was, who my mom was, and being able to talk to her about it. And even pretty late in life. She was starting to come around, but it wasn’t easy. It was really hard for her. She grew up in a different time, a different place.

— Music begins –
TR:

A time & place where disability identity wasn’t a thing.

Cathy’s specific experience with blindness is unique to her but what we all share is finding our path to acceptance. And that’s not often easy for those adjusting to becoming blind. In order to see how Cathy went from denial to Director of a disability Cultural Center we have to go back to her early experience with vision loss.

Cathy:
Growing up, it was just denial city,

It kind of reminds me of the cat that I have that hides under the bed, but its tail is sticking out.
They think they’re hiding, but everybody else is like, whatever, you know, go ahead and hide all you want.

The world really is set up for that kind of denial. I mean, you get all these enablers to help you do it because it’s so much easier for everybody.

TR:

Meanwhile, the person experiencing the loss, continues to struggle.

Cathy:
I loved my history classes. And I would just bury myself in a corner with regular print books, and a magnifier, but I didn’t want anybody to see me reading with a magnifier, if I can help it. I know I shook my head a lot to Read. I’d bob it back and forth, because of Nystagmus. I was ashamed of reading. it was like I had an accident or wet my pants or something to be caught reading in front of other people. It was so humiliating for me.

TR:

That pain goes beyond the emotional.

Cathy:
I remember getting my first cane and putting it in the closet, and it felt like it was just irradiating out from it, like, Oh my god, there’s a cane in there, you know, like, it was like a beast that I put inside.

— Ambient radiating sound begins …
— Music fades out —

I injured myself pretty significantly a few times by not wanting to use the cane because I could technically get by and if I use the cane and didn’t trip for three weeks, or three months or whatever, and I tripped the fourth week, Well, look, I got three weeks as a sighted person.

TR:
These experiences are not unique to Cathy. In fact, it’s more of a reflection on our society. A society that pairs strength with over coming and fails to see value or strength in difference.

Cathy:

They never bothered to teach me Braille.
And if I had learned Braille as a kid, when I was starting out, even if I turned out to be like a total 20/20 person, wouldn’t it be cool to know how to read Braille?

But, there’s so much stigma, things like, Oh, you don’t want to do that.

It’s so ridiculous. You realize how you’re tied up in little knots by society, by other people.

I could have been a more social person earlier on, I could have been a different person earlier on if I had not tried to pretend so hard that I was seeing like, everybody else.

TR:

We all travel at a different pace. Perhaps longer journeys accumulate valuable lessons.

Cathy:
Everybody makes it in their own way. There’s no right way to do it. Once you break that barrier, everything opens up, it gets a lot easier, but you got to get to that barrier. And however you can do it, if you even have a hint of how to do it. Go there early and go there often to get to this other place because it’s a lot better once you’re not in denial anymore, not trying to pass. Not trying to pretend you’re somebody else. That just frees you up, big time!

TR:

That’s a place that’s important and meaningful to you.

— Music begins –
Things you enjoy – not what some so called expert designates as appropriate for “someone with your condition”.

Cathy:

I started using those tools of being a historian to studying blind people. And that was really, really an important moment too, because you realize, one, you’re not alone. And to there is a history there.

I think knowing that there’s people like you that came before you, no matter who you are, and what identity you’re wrestling with, is so powerful, and so liberating, because it means you’re not the only one. You’re part of a tradition, you’re part of a process for a society. It’s not just us selfishly trying not to be treated badly.

TR:

That experience of discrimination or being treated badly, well that can ignite a fire. .

Cathy:

I’m mentioning the name, not to punish them, but just to show these were different times, and I’m not trying to make it up or cover anything over.

I had my first academic job at Barnard College.

I was starting to open up about my vision impairment and sort of being honest with people because I felt comfortable enough to do that.
but it came back to me that they did not want to keep me on, or they didn’t want to really consider me for another longer term job there because of my vision impairment.

They asked me to teach a large lecture class in front of a bunch of people just to see how I would do.

and something when they asked me to do that made me realize, like are you asking other people to do this.

So I said, No, I wouldn’t do it unless they were making all the candidates do it. Needless to say, that job application didn’t go much further.

TR:

That experience helped form a new way of thinking.

Cathy:

If I got kicked out of a job and didn’t get a job, because of my blindness, maybe there’s a flip side to this where I could say this is an identity and get people to think about identity differently.

This was before I knew much about disability studies, this field was kind of just taking off, there was no real disability history at that point.

TR:

So Cathy used her tools!

Cathy:
I started doing research in the French archives, where I did history of medicine, research, and I hooked up with researchers there Talk, talk to them. And it turns out, there’s a really great person that I have coauthored with Zina Weygand.

She introduced me around about scholarship and people and suddenly I was off to the races. It used a lot of talent that I already had in terms of this history research. I was basically off, off and running.

TR:

Her curiosity led to the discovery of a history of Blind people that I’m sure many are unfamiliar with. It began with a pamphlet.

Cathy:

It was called reflections, the life and writing of a young blind woman in post-revolutionary France, and it was handwritten and stuff. And I, I had a lot of trouble reading it. I sat in this archive, by myself. I had this one librarian that would read to me and helped me a lot. I ended up transcribing it and talking a lot with Zina , she was like, Madame history of the blind in France.

TR:

The booklet, written in the 1820’s, authored by Adele Husson, who wrote about her experience as a Blind woman growing up in France.

Cathy:

Nobody had ever written anything about that. We figured out she probably dictated it to different people because the spelling was different in different parts. And the handwriting was different in different parts.

TR:

Cathy and Zina were able to put together the author’s backstory through arduous research

Husson was concerned with being a burden to her family. In her quest to become a writer, she traveled on her own from provincial France to Paris. Her motives for writing weren’t just creative.

— Music ends
Cathy:
She wanted to ingratiate herself so she could get a residency in this place in Paris where Blind people could live if they did the right song and dance to get in. So she wrote this document, and they ultimately refused her.

Call to Action
— Music Begins
TR:

Are you enjoying this podcast? I can’t hear you.

“Can you dig it!” (Crowd roars in cheer!) – Warriors

TR:

One of the best ways to show your support for what we’re trying to do is to just share the show!
Tell a friend to tell a friend.

That way we’re more likely to get this into the earholes of those who need to hear it. And that’s the important part.

You could also give us a review on Apple podcast. The more reviews and 5 star ratings the more likely people will discover us.

Do you have a topic you want to recommend? reach out!

Email ReidMyMindRadio@gmail.com or call 570-798-7343 and leave a voice mail.

And of course Subscribe, wherever you get podcasts!
Thanks family!! And now back to the show!

— Music ends! —

TR:

Adele’s writing, let’s say left much to be desired, but she did achieve her goal.

Cathy:

We figured out at one point that she published more books than George Saund, who was a pretty famous writer at the time.

One of the things that was interesting, we found a book that had a preface, the story was really similar to her story, but it had a different name and the preface.

And it turned out that despite the fact that she said, Blind girl should never marry because if they marry a sighted guy, he’s just going to take advantage of them. And if they marry a blind guy, their prospects are totally bleak. They’ll die in a fire or something terrible will happen to them.

TR:

The research indicated Adele did marry…, a Blind man!

Cathy:

She died in a fire just like she predicted.

TR:

It’s unknown if her two children also died in the fire. Her husband, however, survived and went on to become well known in the Blind community.

Cathy:

He made this invention that you could use to communicate between sighted people and blind people with writing and translating.

He married a sighted woman and lived until he was about 70.

TR:

Cathy’s researched uncovered a community of Blind musicians and literary people in the 1820’s and 30’s.

Cathy:

Eventually, Louis Braille was part of that world, too. He knew Adele’s husband, we think.

[TR in conversation with Cathy:]

When you say a community at that time, I’m thinking, is this an actual community physically? Because how were people actually communicating if they weren’t in the same location?

Cathy:

Good question.

So there are two kind of physical possibilities for them.

One of them was a, the residents that she was trying to get into, and there were a lot of blind people that live there. And they had all sorts of rules about who could live there.

There were the schools that they all went to. National School of blind youth, if you were Blind, anybody in France, you went to this, you went to Paris and went to this one school. I think there was also one in Bordeaux, another large city in France.

In general, you knew people from being in the schools together.

TR:

There’s even some evidence of more social activity.

Cathy:
There was actually a place in Paris called Café des Aveugles, the Blind people’s cafe. It was kind of a seedy establishment in the seedy part of the city, but they would go and hold concerts there, met and exchanged ideas. We don’t know the details so much, it could be as much as like four out of the 40 people that were there were blind but you know, four blind people really make a stir. (Chuckles)

[TR in conversation with Cathy:]

Laughs!

Cathy:
You see these little glimmers of blind culture that are out there, but we don’t know until people really dive in to research it. With access to these archives now, kind of really hard and not organized and not funded. It’s, it’s a little bit harder, but I think the time will come eventually.

TR:

The value is in how these stories are interpreted and put to use.

Cathy:

Once I kind of made that connection, then I could frame a lot of my research as disability as a cultural identity, or as formed in history and as being part of history as opposed to just some weird, random medical condition that affects a few people that nobody cares about.

TR:

We’re talking about a significant shift in perspective. Moving away from a very mainstream view and offering something more empowering.

Cathy:

Don’t just try to fix me, let’s, let’s look at me and what I’ve learned as an expert, because I have a lot of talent and a lot of craft and perspective. I don’t mean me, Kathy, I mean the global we, people with disabilities who have perfected through studying, not just scholarly ways, but just kind of observing, you have to observe society pretty carefully to know how things work.

TR:

If you’re someone who has been running away from your vision loss, I need you to hear this.

— Music Ends

Cathy:

Passing, people disparage it all the time, but boy talk about being a really careful study or of society and knowing how the rules work. If you view passing as the first part of a two part exercise, then passing is a really set of useful skills to have.

TR:
You have to really know how things work in order to fit in. But it doesn’t have to be about passing.

Cathy:

You use those skills for something else and you stop passing and you say, okay , let’s pull it apart. Why do people cross the street that way? or Why do people think that this is important and not this?

Any question is fair game. Disability is so central in things that people have never thought to ask about in a cultural and social and emotional way before it’s always non-disabled people that are framing those questions, and when you put us center, us ask the question, it’s a different thing.

TR:

Centering people with disabilities, the results can be extraordinary!

— Music begins – something upbeat and in the spirit of conquering or coming to terms…

[TR in conversation with Cathy:]
At the time that you started to pursue disability studies, would you say you were still sort of passing? It sounds like you were on your way to…

Cathy:

I was on my way, I was on my way. And I remember going to my first society for disability studies, meeting and feeling like I sat at the bar at Star Wars. It’s like, there’s all these different creatures around and I was like, Okay, these are sort of my people, but some of them not all of them.

TR:

That’s honest. And I know I appreciate that because, I too was there.

But it ain’t where you’re from… it’s where you’re at!

Cathy:

I used to be terrified of other disabled people, I didn’t want to be associated with them at all, are you kidding?

That’s scary. Those people are way more disabled than me, they need more help than me and what’s wrong with me that I would identify with that when I could be in the mainstream, non-disabled society.

TR:

But then you start meeting the people and your opinion and feelings change. You realize well of course we’re not all the same, but some of these people I really do identify with. And for Cathy, that brought her to a realization.

Cathy:
I think I fit more with the people that are the disabled people than the non-disabled people.

In society, there are very few positive settings, where people with disabilities get to be a majority. And that’s what’s so great about our film festival when it happens in person. Superfest is like 4050 60% people with disabilities in a positive way, where people are having a good time, they’re teasing each other, they’re laughing together at the same jokes.

Suddenly, you’re in an environment where there’s more of you than there are less of you. It’s like Whoa. You kind of get a bounce in your step, or your wheels or whatever. And suddenly, you get to be a person that’s in a majority culture, in a way that’s very exciting and validating and powerful.

TR:

History helped establish this identity, meeting other Blind people helped it grow.

Cathy:

I did a training at the Colorado Center for the Blind about 20 years ago. It’s run by and for blind people. they make you do everything they’re blindfolded, wearing sleep shades. You learn travel, cooking. It’s really extreme, you go downhill skiing, rock climbing, all these things.

You learn not to be so afraid.

TR:

Afraid of what is often described as the never ending darkness! (Yuck!)

But fear, well, that’s just an acronym for False Evidence Appearing Real!

Cathy:
You’re taught travel, and everything by blind or low vision instructors. And you know, a lot of sighted people freak out about that. They’re like, Oh, my God, how are you going to be safe or whatever. And I’m thinking, if I’ve got to learn to travel and be safe somewhere, I don’t want that to come from a sighted person, I want to know that a blind person has figured out how to do it, and they’re going to show me.

TR:

Once again we see the role fellow Blind people can play in our adjustment.

Cathy:

Wow, there’s people that really do cool stuff and I can learn from this.

Sight isn’t everything in the entire world. It’s something to value, but it’s not the end all and be all there’s a lot of people that don’t rely on it and can’t rely on it. And they have lots of really interesting and fun and great ways to deal with it.

people focus on that light and the dark and all of that stuff and they don’t give you a place to really meet other people that have figured some stuff out. And I think that’s where your podcasts kind of great to be, you know, you meet all these people that are engaged and, you know, vital and fascinating and fascinated and, you know, wow. Once you crack that nut, I feel like things get a lot easier.

TR:

And if all that wasn’t helpful enough, Cathy offers another piece of advice for those adjusting.

Cathy:

I did a lot of therapy. Anybody that’s afraid of therapy, get over it. Find a good therapist. Get somebody that’s going to push you about this stuff.

I remember I had a therapist who didn’t know a ton about disability stuff, but he was still open, and he listened.

He kind of pushed me. At one point, he said, Would you rather be an incompetent sighted person? Or a competent blind one?

I sat with that question forever, because if I had known, that’s the choice that I was making, I think I would have freed myself up sooner.

[TR in conversation with Cathy:]

Do you think there’s anything about that journey that you actually had to go through in order to be where you are today?

Cathy:
Oh, wow, that’s a great question. (Pause)

Probably

I mean, I am who I am. And it’s all this, like, kind of jumble of what’s me.

TR:

She’s Cathy Kudlick…

[TR in conversation with Cathy:]
So Kathy, you already know you are…

— Audio: “Official”

member of the Reid My Mind Radio Family.

Cathy:
Yay! (Laughing) I was waiting, I was living to hear it. I was living to hear it!
(Cathy & Thomas laughing together fades out)

TR:

Cathy Kudlick, I so appreciate you and you taking the time to share your journey with the family.
And family is supposed to look out for one another. Sharing our journey’s because we know how that can impact another person experiencing blindness – whatever the degree.

You can find Reflections which contains the translation of Adele Husson’s original booklet along with thoughts from Cathy and Zina Weygand on Bookshare.org.
For that link, more of Cathy’s writing, transcripts & more head on over to ReidMyMind.com. And yes, that’s R to the E I D
(Audio: “D and that’s me in the place to be” Slick Rick)

Like my last name.

Peace!

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Young Gifted Black & Disabled

Wednesday, October 7th, 2020

A white background with black silhouettes.  The text: Young Gifted Black descends while the font is increasing in size. the words are colored Red Black &Green respectively.  Centered on the next line reads & On the left is a man in a wheelchair, next is a blind man holding a white cane, in the middle is a woman with two crutches, next is a woman in a wheelchair, and last is a woman missing a leg with crutches. Below are the shadows of the silhouettes with "disabled" in bright golden letters hovering over it.

People with disabilities make up 20 to 25 percent of the population. It’s considered the largest minority. No so called race, ethnic group or age is excluded. Even within the extremely low representation in the media, Black people with disabilities are seldom seen.

This episode, a co-production with Ajani AJ Murray is our attempt to open this conversation.

Earlier this summer, AJ and I invited Author, Blogger Rasheera Dopson and Doctoral Student D’Arcee Charington to join us on a Zoom call to discuss the Black Disabled experience from their individual perspectives. The result, a non-apologetic discussion about representation in the media, acceptance in the Black community and Black Disabled pride… – “Young Gifted Black & Disabled”

For me personally, 2 out of 4 ain’t bad!

Shout out to AJ who’s also co-hosting this episode – a first for this podcast.

Salutes Chadwick Bozeman!

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Audio: Scene from “Black Panther” “In Salute to Chadwick Bozeman

Black Panther:

I am not ready to be without you.

Black Panther’s Father:

A man who has not prepared his children for his own death has failed as a father. Have I ever failed you?

Black Panther:

Never.

TR:

What’s up Reid My Mind Radio Family. Greetings to anyone joining for the first time. My name is Thomas Reid your host & producer. Welcome to the podcast!

Well, when it comes to this particular episode, I’m only one half of the host and production team. You heard my co-host when he was here on the podcast earlier this year. In fact, I liked his opening so much, let’s run it back!

Audio: AJ Episode intro

Ajani AJ Murray:

Our friend that we have in common, Cheryl green, told me about you …

Music begins “Nautilus”

and I’ve been listening to your podcast and I love it! It’s so dope and fresh. I’m kind of a Geek so I watch like a lot of PBS and I listen to NPR and so it reminds me of like radio documentaries. I particularly enjoyed when you were talking to Leroy about the Black History especially from the disabled perspective. I did something like that on my Insta Gram and some of my friends were like keep it coming AJ. So now you’re a resource.

Ajani Jerard Murray, a lot of people call me AJ.

TR:

But first, uh, hit me with the intro!

Audio: Reid My Mind Radio Theme Music

TR:

AJ, welcome back my brother!

AJ:

Thanks for inviting me to be on the other side of the mic.

Why don’t we get right to it and I’ll introduce our guests.

Ladies first of course!

Audio: Ladies First, Queen Latifah

AJ:

My friend also living here in Atlanta Rasheera Dopson.

Rasheera:

Hi everyone! I’m really excited to be on this podcast with you guys today.

AJ:

And then we have another friend of mine from Washington DC, his name is D’Arcee.

D’Arcee:

D’Arcee Charington Neal. I currently live in Columbus Ohio. I am a second year Doctoral Student at the Ohio State University.

Music begins… “Young Gifted & Black” Donny Hathaway

TR:

What exactly do our guests have in common?

AJ:

They’re all Young Gifted, Black and Disabled!

Music Stops

Music Begins… Hip Hop Beat

Rasheera:

I am an author, Blogger, Disability Advocate. Owner of a nonprofit organization, The Dopson Foundation and the Beauty with a Twist Brand. two organizations dedicated to creating spaces of inclusion for women with disabilities. Being the founder of those two organizations that gives me a lot of space to be able to reach other minority women with disabilities.

AJ:

And D’Arcee

D’Arcee:

I am a second year Doctoral student at the Ohio State University and I do a lot of work at the intersection of Black identity and Disability specifically focusing through the lens of popular culture. A lot of my work has taken me working with major corporations, a bunch of nonprofits, some government agencies. Now I’m doing it for academia.

Rasheera:

So I was born with two rare diseases called Goldenhar Syndrome and the other one is called VADER Syndrome. Both of my syndromes have similar types of birth defects. One is considered a facial difference so when most people see me you notice that my face is asymmetrical. I was born without a right ear or right jaw bone. So I kind of fall in between the rare disease chronic illness and a disability intersectionality. .

I’m always real specific when I say that because you have a lot of people who have rare diseases who may not have a disability or you may have people with disabilities who don’t have chronic illness. So to say the least my childhood experience with disability was very complicated

TR:

That really is a good point. SO many people think disability and therefore unhealthy, sick. The two don’t necessarily always go hand in hand.

Rasheera:

I’m very grateful. I grew up in a single parent household with my mom. She was my fighter and advocate. The reason that I’m able to speak, to walk, to is because I had a lot of work done.

One out of twenty five thousand people have my condition. So really I didn’t meet another individual like myself until I was 25 years old.

A lot of moments of isolation and just kind of living on survival mode.

D’Arcee:

I just wanted to add, so I mean I saw you on video before all of this and I just think you’re absolutely gorgeous and never would have even thought about any of that.

Rasheera:

Ah,thank you! (Giggles)

D’Arcee:

I was like wait? What? I didn’t see none of that on camera, wait, … huh?

TR:

AJ:

D’Arcee has CP or Cerebral Palsy.

D’Arcee:

My parents are together They’ve been married for 35 years this year. Neither one of them really knew anything about disability or the idea of what to do with a disabled child. I didn’t get diagnosed until I was 2 because at 18 months I hadn’t gotten up off the floor yet and they were really concerned about it. When they took me to the doctor he diagnosed me with CP. My mother said she left the doctor’s office went outside sat on the curb and cried.

She was upset because she thought all her hopes and dreams of a child doing stuff was gone. (pause) Clearly she was wrong!

Music Ends…

Audio: “Message” … From Don’t Be A Menace While Drinking Juice in Da Hood

AJ:

The message is about false expectations inaccurate beliefs or misperceptions.

TR:

Most parent’s do the best they can with what they have. Older now, D’Arcee has taken the time to have conversations with his parents.

D’Arcee

And one of the things we talked about was Ableism. My parents were not familiar with the terminology. They were doing things that were progressive that they didn’t even know. I cooked, I cleaned. It wasn’t a question of like if you cooked but it was a question of like when are you going to. My bedroom was always on the second floor and we always lived in a house with steps and I never had one of them little contraptions that people be putting on the banister where you just sit in and it takes you up the step. Look that was a genie wish machine that I saw in movies and TV because if I wanted to get to my bedroom I had to crawl up the steps.

TR:

I’m sure that can be an uncomfortable image for some. What we see is so highly based on what we believe to be true. It reminds me of when people see me or another Blind person walking with our cane. For the unaware, it appears that the cane and therefore the person is crashing into things. What they don’t realize is that we’re independently accessing information in a way that works for us.

AJ:
Disability is complex.
For example, I need help with just about everything except, using a remote control.
Some people have more mobility than others. And that’s ok.

D’Arcee:

Inside the house there was no expectation for me to have to be anything other than who I was. When you leave the door, the bar of expectation just goes so low.

My parents never talked about the difference. They didn’t prepare me for the Ableism that was going to come in middle school, in high school in college and looking for a job. I had to find all of that out by hand.

TR:

Rasheera also shared some reflections on how she too wasn’t prepared for what was to come in the real world.

Rasheera:

I felt like I wasn’t properly prepared to be a disabled woman. In my household I was just Sheera and we goin’ treat Sheera like everybody else. Then when I got to school I’m thinking I’m a Black woman and people are looking at me like, hmm you’re a Disabled Black woman and there’s a difference. I felt like I had to learn the hard way. I’m 29 and I’m finally starting to get this thing. And it has nothing to do with you it has really everything to do with the system that was created not for people like you.

D’Arcee:

People just assume that if you say the word disability it immediately translates to less than, without them knowing anything about symptoms or anything. People are just immediately like ok, well clearly you’re special needs, clearly you belong in the class with other people with intellectual disabilities. Not to say that’s any better or worse, but it’s a different type of class and it’s a complete segregation from regular education.

AJ:

Societies low expectations come in different forms.

D’Arcee:

I lived in an all-white neighborhood in North Carolina so people would just come up to you and be like “oh, oh my God, where were you shot?” … was the number one question I would get from like the age of 9 through like 17 because people just equate and this is a really specific experience for wheel chair users only because the narrative that people have of chair users and Black people is criminality.

TR:

D’Arcee went on to site shows like Oz & Cops which help spread that narrative.

AJ:

I feel like if we took a few more minutes we’d come up with some other examples from film and television.

TR:

We began the conversation by asking each of our guests to share the specific type of media they consumed growing up.

AJ:

First up, Rasheera.

Rasheera:

I’m a writer! So when I was in elementary school I thought I was going to be the next Toni Morrison. You could not tell me that…

The rest of the panel jumps in with positive encouragement. “You still can be” You’re still young” “Hold up”

AJ:

Black love is not just about romantic love, it’s also lifting one another in support.

TR:

Facts!

Rasheera:

She didn’t publish her first book until she was 40 and I’m 29 and I just published my first so it’s still Goal!

I grew up in a predominantly white school. My sister and I were really the only two Black kids in the entire school so it wasn’t until 11th grade in high school that I actually got exposed to African American literature. The Toni Morrison’s, Alice Walker’s , The Zora Neal Hurston. I’m just like oh, these people sound just like me!

TR:

That’s connecting with the voices of Black women authors.

AJ:

The full story of the black experience hasn’t been written yet.
There are plenty more chapters yet to be explored.

Rasheera:

As I’ve gotten older, even though I look to those mediums and those platforms such as the books and even Essence magazine being a girl and looking through all the pages and the different fashion things, I get a little sad. I never saw anyone like me. I never saw a girl with disabilities in Essence magazine. Struggling with low self-esteem growing up I think it had a lot to do with the fact that I was reading Essence magazine, Ebony magazine Jet magazine reading the stories of Toni Morrison and hearing the Black struggle but I never read about the disability struggle.

It Matters, it really does.

D’Arcee

My family is a movie family. We have been addicted to films. I can vividly recall as an 8, 9 year old spending many an hour re-alphabetizing my mom’s thousand VHS tape collection. No lie and each tape had like five movies on it. We loved movies growing up . My mom was really into horror films which is hilarious because she’s super religious. She’s an Evangelist now.

Music… church organ

D’Arcee:

It’s one thing to not see yourself. It’s another thing to not be thought of.

These days when I watch TV and Netflix and stuff I see disability. I see it quite a lot, but I feel like there are disabilities that are sexy. I don’t even mean attractive, I mean that there hot in the media because people find it to be easy to access and it works really good for a story plot. So if I had to pick one that would be Autism.

TR:

Let’s be very clear, because you know how things get misconstrued, in no way is D’Arcee or your hosts in support of pitting disabilities against one another. This isn’t about any sort of perceived hierarchy within the disability community.

AJ:
This is about disability representation in the media. And it really is true, representation matters!
Right now Autism has the spotlight in the media.

D’Arcee:

It’s super popular right now. You see white Autistics everywhere. When I was growing up we were watching movies it was so funny because anytime you would see a Black person like and I mean any time you would see Black people that were like off to the side or just like a spec person we would get so excited.

[
Blade, was my shit!

AJ:

Another question for the panel was to recall their first time seeing disability represented in the media.

TR:

Says below with live version…

TR in conversation with panelists:

And specifically Black disability.
,
Panelists: long pause… Delay… breaths…

Rasheera:

Man, … (laughs)

D’Arcee:

I gotta think about it! Um!

AJ:

Um!

Rasheera:

I think when I read about Haben Girma. The Deaf Blind lawyer.

D’Arcee:

Haben (correcting pronunciation), that’s my friend Haben. Haben Girma, yeh!

Rasheera:

That says a lot because it’s present day.

D’Arcee:

Yeh, right, that’s like last year.

Group: Wow… laughs

Rasheera:

Um, so no!

Rasheera:

I could count on my hand and I even use my whole hand for how many Black disable people I’ve met.

D’Arcee

I mean I know quite a few, like in real life.

[TR in conversation with D’Arcee:]

As a child did you know them?

D’Arcee:

As a … no, no!

My friend Angel was the first Black Disabled person, this is going to sound terrible but, the first Black Disabled person that was actually doing shit!

AJ:

Does that sound terrible to you?

TR:

I think it’s about people who have aspirations and goals. Many people I’ve spoken to for the podcast have said to me, I was looking for or I found, you know, the cool Blind people. I don’t think it’s specific to the goal or level of education, , but rather it’s about someone striving to accomplish something.

D’Arcee:

I had gotten an internship at NASA.

NASA forgot that they hired disabled folk, three of us. They forgot that we needed housing and they put everybody else in an apartment complex that was like 20 miles away and it didn’t have any accessible rooms so the University of Maryland had to come through at the last minute and give us some dorm rooms to live in and Angel just happened to be my next door neighbor. I saw her and I was like wait a minute, Black Disabled woman and then she was like yeh, I’m a Doctoral student and I’m finishing my PhD in Gender and Women Studies.
Wow! It was so beyond what I even thought was possible. And that sounds so terrible.

AJ:

What’s terrible is that even in 2020 we’re struggling to think of Black Disabled people in the media.

D’Arcee:

I know lots of Black folk but I can’t think of any with an actual disability that’s been … I’m sorry Denzel Washington, The Bone Collector. Which is the only one I can think of off the top of my head.

AJ in Conversation with Panel:

I don’t know if anyone would remember the show “Malcolm in the Middle”. He had a friend, I don’t remember what his disability was but he was in a chair and he was kind of an A-hole. That was the first person that I can remember that was Black and Disabled.

Rasheera:

You know, now that you mention that AJ, I thought about Jimmy from Degrassi. And I guess he didn’t really come to mind because the first two seasons Jimmy wasn’t in a wheelchair, but I guess the third season didn’t he get shot or something.

D’Arcee:

Yeh, he got shot!

AJ:

I knew someone would come up with an example of this trope.

TR:

And that’s a Canadian show isn’t it?
TR:

These tropes aren’t limited to the US.

AJ:
TR:

Also, I’m pretty certain in all of the examples mentioned, they weren’t played by a person with an actual disability.

AJ in conversation with panel:

It seems like we can’t get any real stories about real people with disabilities in movies, but if you’re an able body actor and you play somebody with a disability you may get an Oscar.

D’Arcee:

I would be remised if I didn’t at least bring up the fact that Netflix does seem to be trying to do it. I’m trying to be generous.
So I love the show Sex Education. I think it is one of the best shows to come out in a long time. It’s a comedy, a British comedy. In season two they introduce a character with a disability. So the actor himself is actually disabled which I thought was great.
TR :

But!

AJ

Wait for it!

D’Arcee:

Unfortunately he wasn’t Black so I can’t get everything that I want.

AJ:

D’Arcee mentioned Blade earlier. Not a movie that I think most people associate with disability.

TR:

I know I didn’t but, when he broke it down!

First, the ADA defines a person with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activity.

D’Arcee:

He’s a half vampire half human being. He basically has some weird combination of Sickle Cell and an auto immune disorder. I see it as a rare disease. He was working with huh, wait for it, a Black woman who was also a Phlebotomist. She develops an immuno therapy that he inhales via an inhaler that allows him to function.

TR:

I told you, when he breaks it down for you!

D’Arcee:

It affected me so deeply. I saw that movie and I was just like this is a disabled Black dude who is a super hero who is saving people and he’s Black A F with his Barber who makes his weapons with his Camaro car with the high rims. It was a marriage of like blackness and disability unlike anything I’d ever seen before.

Black Disabled people have already been there but they’re not being discussed that way. Storm is a Black Disabled woman. If she were a real person she has the same chromosomal disorder as a person with Down Syndrome. She just shoots lightning bolts out her eyes. She would be covered under the ADA. Technically.

AJ:

Do you think Wesley ever thought about the character in that way?

TR:

I doubt it, but I’m going to re-examine Nino Brown.
TR:

AJ:

Shout out New Jack City!

What up Pookie!

D’Arcee:

I thought it was brilliant but people don’t give Wesley Snipes props. People keep thinking that Dead Pool was the first rated R comic book movie, it’s not! That belongs to Blade.

Audio From Blade:
Blade: You people better wake up!

Rasheera:

Even the new Harriet Tubman movie, come on people didn’t give credence to the fact that she was a Disabled woman. Okay, she was spiritual and she had visions, but she had probably a form of Epilepsy…

D’Arcee:

She definitely did.

Rasheera:

that caused her to have seizures. That is a disability and the fact that she freed thousands of slaves, I was like give that woman her props as a Disabled Black woman.

Audio: Martin Lawrence in standup performance.

“Handicapped people have good parking spaces… (fades)

Rasheera:

It was some time last year , Martin Lawrence, he had put an old clip of him doing standup comedy. Of course he was playing somebody who had some developmental delays. He had the arm twisted and was doing the things like he was making fun of a person. He had thousands of comments on there. This is the issue I have with the Black community, we still endorse people who have created content that sheds a negative light on people with disabilities.

TR:

Rasheera gave an example of how there seems to be more push back from the white community towards those felt to be disrespectful…

AJ:

It’s one thing to have a comedian, for example, perform and perpetuate a negative image. It’s another level of pain or hurt that comes from the general public who argues for that sort of content.

Rasheera:

When I point it out… This lady she commented, she was like you guys are too sensitive. I was like you know, no we’re not too sensitive we understand that was like the early 90’s so you know people just didn’t know or did they care? We really have to go back and say you know that wasn’t okay that you made a whole stand up production making fun of a person with a developmental disability and we still laugh at that. It’s not cool!

AJ:

Too sensitive?

Not really when you consider history and experience.

Rasheera:

Whenever we have a person in our family who’s “Disabled” you know, we’ll call him slow or special. That’s Uncle Ray Ray we keep him in the back corner and we won’t tell the family that he exists.

Historically when we’re dealing with certain levels of pain and trauma we do use things such as comedy and music to provide relief to that. I don’t know if it’s justifiable but I do think it needs to be brought to the surface like okay maybe we do need to peel back why is it that we still think it’s okay to hide our relatives with disabilities. Why is it still like such a level of shame in our community when it comes to disability?

D’Arcee:

This is what my work centers on in academia – what I am trying to coin Afro Fantasm. This idea that Black Disabled people within the Black community exists as living ghosts. We exist and folks know we exist, they do not acknowledge the disabled part of the identity as opposed to the Black part. I had someone recently tell me, one of my friends recently tell me; well disability isn’t race. He said I just think you’re making something out of nothing and you’re creating something that does not exist. I said it most certainly is.

AJ:

How do you think that would make you feel?

TR:
If necessary, make the larger identity relevant to you.

D’Arcee:

Why do you seem to think that just because Black people are disabled we don’t need to do things culturally that still read as Black? All my disabled female friends they constantly complain about how nail salons are not accessible. As a wheelchair user I still need to go to the Locktician to do my Dred’s. Me being in a wheelchair does not stop me from having to do that because as a Black person I don’t want to look busted! Or ashy or like any ‘ol kind of way because that’s already assumed that’s how we’re going to look anyway when we come out of the house.

Music… Let the Church Say Amen

D’Arcee:

Church is the center piece of African American identity and yet I don’t know of most Black churches that will use interpreters. They don’t bring cart services, they don’t provide hymns in Braille. It is not a conception that even crosses into people’s minds and so therefore I call it Afro Fantasm. You exist but only in the barest spectral sense to other Black people

Audio: Scene from “Blackish”
Takes place in a Black Church. The pastor speaking from the pulpit.

We will now offer prayers for our community. Everybody knows somebody broke into Shante’s car and stole her last good hearing aid. Shante we’re all praying for you. Pause, Pause… Shante, (spoken slowly and deliberately) we are all praying for you. Ahuh, ahuh! Church agrees!

TR:

CART services is an acronym for Computer Assisted Real Time Translation.

AJ:

Real time captioning.

D’Arcee:

if we actually were to go beyond that and to start looking at the actual physical embodiment of disability, folks shut down.

Rasheera you were saying why does the Black community continue to laugh at Martin Lawrence’s jokes? So the answer as horrible as it is but it’s the truth, people can come on my Twitter and check me if they want to, you don’t see us as people. Bottom line point blank period with a t, we are not people in your minds. We are uh huh, interestingly enough, three fifths of a person.

Music Ends with a low base and then bass fades out

Rasheera:

When you call them on that point it’s just like oh well you’re taking away from the Black cause.

How am I taking away from the Black cause when really all I’m trying to show you is the full spectrum of the Black narrative.

AJ in conversation with panel:

This is a part of my Black experience. I wonder and I’m just putting this out there, I’m not saying this is concrete, but I wonder if it has a lot to do with the fact that disability is something that needs to be healed.

D’Arcee:

Absolutely. You don’t want to say its physical I will.
TR:

In case anyone is getting this twisted and thinks a pass is being given to others and saying Black people are more Ablest?

D’Arcee:

That is not what we’re doing.

What I need to specify is that while it is true that the Black community often does not do things to support people with disabilities. The flip side of that coin is that it’s because of systemic racism that we can’t. Most of the time. I will say yes it happens sometimes, yeh there are assholes everywhere, but the reality is I firmly believe that Black people are not out here (laughs) being villains to Disabled people on purpose.

TR:

Systemic racism in the form of redlining for example.

AJ:

Too often small business owners of color are unable to access capital to afford retrofitting existing buildings to make them accessible.

D’Arcee:

I will say that yes, while I go to Barber Shops and you see steps and I’ll be like Lord Jesus, the flip side of that is the people in there have always helped me. They will stop cutting hair to come outside to do what they have to do so I can get into the shop.

TR:

Black Love?

AJ:

Black Love!

But we definitely shouldn’t have to do all that!

Rasheera:

[
We just haven’t had the bandwidth within our community without the barriers of systemic oppression to allow us to have acceptance for everybody.
]
So if you guys make stuff more accessible, and wealth is equally distributed in our community, half these conversations we wouldn’t even be having.

AJ:

I had to ask our panelists how do they see Black Disability moving into the mainstream?

D’Arcee:

Somebody needs to sit Shonda Rhimes and Kenya Barris down and say you’ve done a lot for Black people but now you need to purposely put Disabled folks in big ways. And that’s only part of the issue because quite frankly the other part of the issue is that there aren’t enough actors. If Kenya Barris and Shonda Rhimes create a show and they want to put a Black Disabled person front and center, if they want them to be the next Olivia Pope they have to be ready to take it.

AJ:

Is the question about the number or the level of experience?

D’Arcee:

I love Peter Dinklage, oh my God he’s fabulous. But he is the only one. These acting studios need to stop trippin’ and they need to let people with disabilities straight up in because that’s the only way. I want a wheelchair using peter Dinklage. I want a person in a wheelchair who is respected.

Rasheera:

That’s one of the reasons why I decided I want to go into Public Health. At the end of the day we can talk about how the spaces are needed, but actually we need more people with disabilities to occupy those spaces.

Music begins, Young Gifted & Black, Donny Hathaway

When you get to the very core of it, we have to begin to empower the disability community. Letting them know, you can go to college. You can get a Master’s degree. You can go into any career field that you want and maybe we have to find ways to strategize so you can get the type of accommodation.

Music morphs into a Remix of Young Gifted & Black… Young Gifted Black & Disabled!

AJ:

We need more opportunities. The wealth of talent is there. You just have to want to see it.

Rasheera:

Empower disable people, especially disabled Black people.

Before I ever knew I was disabled I knew I was Black first. I was very fortunate that my family raised me to know everything about my people. We weren’t just descendants from slaves.

I identify as a Disabled person, a woman and a Black woman at that. I take a lot of pride in that. Even somedays when its hard and I’m just like man, I’m the only one in the room.

It’s a lot of pressure, but it’s also a place of fulfillment and joy where you’re able to pull from those different life experiences.

D’Arcee:

I was just thinking of the Morpheus quote from The Matrix Reloaded, which I recently saw. When he was in Zion, when he was talking to everyone trying to calm them down and what he said is; what I remember most is after a century of struggle I remember that which matters most.

Audio from Matrix Reloaded: “We are still here!” Crowd roars in applause!

That resonates so deeply with who I am as a person.

The more I learn about Disabled History and the more I learn about Black history and how they intersect, it just makes me even prouder to be the type of person that I am and to be able to do what I do.

I am the only wheelchair user in the graduate department of several hundred students. I’m in the number one school for English in the United States. I have a complete full ride for this degree, they paid me to come there.

TR:

He’s not flexin’ on y’all!

D’Arcee:

It’s a question of knowing your worth. When it comes to Black Disabled people, we exist in this space that people think of as double deficit. You start off from a negative place. As a Black Disabled person you are the bottom of the bottom, if you believe that you are.

I think the only way that people don’t fall into the trap is by having a support system of people who are constantly telling you that this is not true.

AJ:

That support system can be your family, friends but I think what I heard here today is the overall community can step it up.

TR:

Shout out to Rasheera who you can find on …

Rasheera:

Insta Gram, Twitter, Facebook, Linked In – just type in Rasheera Dopson. R A S H E E R A Or Beauty with a twist.

TR:

And D’Arcee!

D’Arcee:

My Twitter handle is DRChairington. Charington but spelled like a chair, as I’m a wheelchair user. Oh, it’s Dr. Chairington, I’ll take that too!

TR:

It’s official, you both are part of the Reid My Mind Radio Family!

Brother AJ, you already know, you ‘ve been down with the Rmm family for a minute.

Thanks for co-hosting & producing this episode with me.

AJ:

Thanks Tom, let’s do it again!

TR:

I’m not sure what I can let out but AJ’s always doing something, you know Acting up somewhere! He’s @GotNextAJ on Twitter and Ajani AJ Murray everywhere else.

What do you think about the format, the topic anything?
Let me know at ReidMyMindRadio@gmail.com or on Twitter @tsreid.

When it comes to the Black Disability experience, there’s so much more to talk about. I think you can expect more right here on Reid My Mind Radio. Sounds like something you don’t want to miss out on?
Subscribe wherever you get podcasts!
Remember transcripts & more are over at ReidMyMind.com. And yes, that’s R to the E I D
(Audio: “D and that’s me in the place to be” Slick Rick)

Like my last name.

Audio: Reid My Mind Outro

Peace!

AJ: Laughs!

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