Reid My Mind

Music begins: A melodic, slightly distorted whistling flute… the melody loops lowering in pitch…

R: 00:02
Greetings Reid my Mind Radio family.

If this is your first time here, allow me to welcome you. My name is Thomas Reid. I’m the host and producer of this here podcast. We’re in the final half of what is our last season of 2022.

We call it Young , Gifted, Black and Disabled.

Music continues: … opening into a mid-tempo groove supporting the melodic flute.

By coincidence, my guest today, like our prior guests, Haben Girma is also deafBlind. As we know, disability falls on a spectrum and is experienced differently by each individual.

Hearing two different Black deafBlind experiences. Well, that’s just going to add more dimension to the conversation. Keep that in mind as we get into it. Let’s get it!

Audio: Reid My Mind Radio Intro theme music

Marc: 01:03
well, my name is Marc Safman. I’m a light skinned Black man with black, gray at the temple hair, and I typically wear my glasses, but I’m not wearing glasses, and a blue t shirt. Got a blue background behind me. I’m considered sighted deafBlind.

TR: 01:20
at 16 years old Marc underwent acoustic neuroma brain surgery. In addition to auditory processing challenges, the surgery left him deaf in his right ear, he began experiencing progressive vision loss about 10 years later, and is now legally blind.

Marc: 01:34
I’m kind of like, okay, I’ve just got to find ways to do that. And enjoy what I’m looking at in the world, what I’m hearing in the world are people who take the time to give me the time to take my phone out.

TR: 01:47
Marc uses Google transcribe the speech to text that enables him to understand exactly what a person is saying. With magnification. He’s even been able to function using pen and paper to interact with others. Yet, as you can imagine, there are some real challenges

Marc: 02:02
a lot of the issues about my disability was kind of like, well, you know, you get older, and you really understand yourself a little bit more. You understand how your disabilities were impacting you, you understand the solution. And then you see the problems that I face; staying employed, interviewing, just trying to socialize with people where you really can’t hear, or you really can’t see someone looking to make eye contact with you.

TR: 02:27
We’ll see just how that difficulty socializing impacts all aspects of a person’s life. marc’s either an optimist or he just has a good sense of humor, to note the benefits?

Marc: 02:38
Some people try to engage me with the point of mugging me. And I’m kinda like “sorry did you say something?” They say something snippet, I’m saying “I’m sorry I don’t hear very well so I have a hard time understanding what you’re saying. “And they walk away.

Audio from “Running Scared”
Mugger: Give me your money.
Potential Victim: “What?”
Mugger: You heard me…

TR in conversation with Marc: : 02:52

(TR & Marc Laughing)

that’s a good defense.

TR: 02:57
In addition to what I’m gonna call the ableist muggers, sometimes those who walk away are potential employers, being deaf can make interviewing a real challenge, especially when the interviews consist of multiple people asking questions, Marcs access accommodation doesn’t always suit potential employers,

Marc: 03:17
I’m a Paralegal and I work in anti-money laundering compliance, Thomas, so I deal with people in financial services typically don’t like to write things down. There’s nothing you can do. And I feel like also I had interviews where, I would have to name them, the National Bank of Pakistan, these kind gentleman took turns sitting next to me, talking in my ear, and writing things out very patiently. Not one of them had a problem. People who make the accommodations, they’ll go out of their way to try and help you while you’re on a job. The people I used to work with were some of the most excellent people on the planet. The technology was not as developed back in 2006 2010. They would all routinely just talk or write things out for me.

Music begins: A piano melody with jazzy horns leads into a melancholy groove.

TR: 04:04
Sure, we all can appreciate those who just seem to automatically get it. They may not know the right thing to say or do but they connect on pure humanity. They’re open to communication and want to succeed with others.

Marc: 04:19
You will learn on the job that there are no laws protecting disabled people, employers, they frequently have a mandatory arbitration clause. Everyone knows that it’s a very formal. You have to go through the EEOC and typically the EEOC will probably reject your case and tell you to go file a lawsuit. And that is very long, lengthy process. New York City Human Rights Commission from my experience has not been very helpful. They have declined to prosecute multiple situations. They have rejected what they consider one off situations. I submitted the same freaking complaint with so many different companies trying to access CART, or the real time captioning open captions at events for various professional or cultural events.

TR: 05:07
CART, or the human generated real time captioning is a must for Marc and others at networking events, conferences, community forums. They can feature multiple speakers often slide deck presentations or references to other visuals. Therefore, context is very important to truly understand what’s being transcribed. It’s not accessible through an apple auto generated captions. Marc says there’s no real help and even convincing organizations that they are indeed supposed to provide this access

Marc: 05:36
The Mayor’s Office on Disabilities here in New York City has one of these useless programs where they will contact an organization and say the accommodations are the law. But if that organization just says, Hey, no, we’re not going to do it. MOPD turns around and says, Well, now you can file a complaint. I have filed complaints and they take multiple years to resolve with simple CART text to speech complaint.

TR: 06:01
Even when he’s been invited to attend specific functions and asks for the accommodations CART is not provided. There are loopholes that basically allow organizers to put the responsibility on others like the event venue, who end up ultimately pointing the finger back at the organizer. Meanwhile, Marc not only request CART Services, he’s prepared with the names and contact information for providers,

Marc: 06:28
all you need to do is contact the vendor. I don’t care if your host doesn’t know what they’re doing. That’s not your host’s obligation. All these organizations will punt, and the law’s so vague, the Division of Human Rights Law hopefully clarify that. I’m not settling out of court with these folks

TR: 06:44
doing so wouldn’t benefit the community.

Music fades out.

TR: 06:51
Marc has enough usable vision where he can often read with the help of magnification. He knows basic Braille and advocates for its wider availability, and points out where once again, the deafblind community is being left behind.

Marc: 07:04
Blind groups have prioritized ballot Marcing machines, or having accessible ballot through screen readers. And screen readers are totally unhelpful if you’re deafBlind.

Synthetic Voice: ” Synthesized speech won’t help someone who is deafBlind!

the blind community that I’ve encountered here in New York has been very reluctant to embrace Braille ballots. I’ve been pulled directly by other advocates that they feel that requesting a Braille ballot would be a negative experience for someone. I don’t see how there would be a pejorative guilt trip or make anyone feel like they’re being singled out. Braille is critical. Braille ballots are critical.

TR: 07:46
While Braille isn’t considered a technology solution, there is a technical component with electronic braille displays, which makes CART also accessible to Braille readers. As we know the true barriers for those with disabilities are human made. Consider the mobility challenges for those who are deafBlind. Yet the CO navigator or support service provider is a program that can greatly impact the community.

Marc: 08:11
There’s a strong preference for Co-Navigator, as the term.

Co-navigator helps the deafblind individual with mobility, running errands, helping the person conducting transactions, shopping or whatever

TR: 08:25
sounds like the benefits could even extend to help reduce some of the challenges like employment, community involvement, and social isolation.

Music begins: A slow, driving haunting groove

Marc: 08:34
It is incredibly offensive that We have a governor and a state legislator that basically doesn’t care. Hearing professionals, nonprofit groups are well aware of the importance of the CO navigator program, they have done absolutely nothing. The National Association of the Deaf has done nothing. ESOD here in New York, their state affiliate, they do nothing ACB, NFB, nothing!

TR: 08:57
I have to say I haven’t verified this.

However, I do know that during my own time spent a bit more involved with blindness organizations. I can’t recall much in the way of advocacy for deafBlind specific issues.

In all fairness, Marc did include the AFB in what I believe is, a call for action.

Marc: 09:18
If they did something well, it’s like, I think we would have a program already.

TR in Conversation with Marc: 09:21
if the blindness organizations and the other organization was to get involved. What exactly is the involvement that’s necessary? We’re talking about more folks advocating for it? Or is there something very specific that they’re not doing that they could do?

Marc: 09:38
Helen Keller National Center cannot advocate because of their federal funding.

TR in Conversation with Marc: 09:42
Okay.

TR:
I think he’s looking for advocacy. And maybe that’s not actually a lot to expect from advocacy organizations, especially considering what happens when many in the deafblind community try to participate in community or political events.

Marc: 09:57
You really have a hard time participating when you can’t get the electeds to make accommodations at their events, they don’t care. There’s a fear of disabled people still, and it’s deep. And it’s one of the reasons why, even within the progressive political community, people won’t touch it. Because they don’t think that there’s votes in the disabled community.

Music ends as if highlighting the next statement.

And they don’t realize the voting bloc power that is growing.

TR: 10:24
that block can be really effective, especially with solidarity, disability, solidarity, that means recognizing that you and your specific disability doesn’t truly win. Unless we all win. Along with recognizing other disabilities. That also means the multiple intersections that we bring, so called race, gender, sexual orientation, etc., etc. With this in mind, I asked Marc, a very specific question around representation.
TR in Conversation with Marc: 10:44

any conversation amongst the deafblind community about Helen Keller, in terms of representation in the media? If there’s anything about deafBlindness, it’s always Helen Keller, and I’m just wondering, do you have any thoughts about that? Is there any sort of discussion about that any feelings?

Marc: 11:10
Some people have concerns about she was from an upper middle class, Southern aristocratic family. However, it does have ties to the Confederacy, I understand that she would have to be from a very well off family in order to have a private tutor. She’s elevated for commodification. It overlooks the fact that Helen Keller was a radical, and very much advocate of workers’ rights, women’s rights. She was not a weak woman. She was a pretty strong willed individual who spoke her mind very clearly. And pissed off a lot of people,

TR: 11:43
the way Helen Keller story is told, often doesn’t present the nuance within her own life. More importantly, that simplification allows us to not consider others who are deafBlind people who are deafBlind.

Marc: 11:54
People just want to latch on and commodify things and oversimplify things so that they don’t have to think.

When people say their disability diversity consultants, they simply don’t actually understand the accommodation, or the needs or interests or concerns of the community, they just talk about these very vague solutions. They do these LinkedIn hashtag strategies, that really doesn’t help inclusion. you’re playing along with a narrative that’s controlled by neoliberal elites, not people. It’s only through challenging the elites, and demanding on meaningful laws, programs and services that respect individuals for their humanity.

CO-navigator services, providing Braille ballots, Braille literacy, eliminating tokenism.

Why don’t we have accommodation Jobs Centers that the government could just basically simplify this for all business efficiency. We have the solutions, you have no excuses for denying opportunities to people just because they need accommodation.

TR: 12:59
As a society, we seem to be okay with accommodations that are easiest for us. And too often the undue burden is put on the disabled person. It’s like we fail to see the value of accessibility,

Marc: 13:12
that allows people to live an independent life without having to rely on family and friends.

Music begins: An upbeat, feel good, inspiring horn melody opens to a fun and cool Hip Hop beat.

TR: 13:21
I’m always reminded that an independent life should be dictated by the individual, what constitutes an independent life, for me, may be quite different for you. And that’s fine. Similarly, this individual approach applies to access.

Marc: 13:37
So even if you have a solution, the solution still needs to be tailored to the individual. And that is the tricky part.

As Andrew Cuomo demonstrated, in his covered briefings when he was refusing to provide in frame ASL, he can’t just assume that just because someone’s deafBlind, doesn’t mean they’re the same type of deafBlind. I don’t need pro tactile. You providing pro tactile interpretation, it’s not going to help me. The CART solution is not going to help another deafBlind individual. So you can’t say, Well, I provided ASL.

Music continues…

TR in Conversation with Marc: 14:12
Tell me a little bit about what you like to do when you’re not doing all of the advocacy.

Marc: 14:19
Well, I like art. I take a lot of photos because, well, it helps me see things. You’ll end up taking like a lot of photos. I don’t necessarily see what I’m looking at until you look at the photos.

I like going to opera, sporting events. I love baseball, hockey, soccer. Well I’m not tall and I’m not a big guy, so I’ve never went out for football and I’ve never tried basketball.

TR in conversation with Marc: 14:38
You used to play baseball?

Marc: 14:41
Oh, yeah.
I used to play shortstop, third base. I’ve been on the all-star team a few years.

TR: 14:45
That’s sort of how I like to think of my guests, all stars, or as I tell them all here on the podcast; official!

That’s right Marc, you’re an official…

— Airhorn

… member of the Reid my Mind Radio family Brother.

If you want to reach out and connect with Marc, you can find him on LinkedIn.

Marc: 15:03
That’s probably the best way to reach me. My name Marc saffman,
(spelled out) M A R C, S like Sam, A like apple, F like Frank, M A N.
TR: 15:15
I met Marc on Twitter. I can tell he’s a persistent guy, just by the way he followed up with me.

He continues to contact and schedule meetings with elected officials from local to federal. He shows up for council meetings and continues to request access. He follows up when the access isn’t granted.

He’s an advocate.

And as we know, there’s all types of ways to advocate and inform…

In fact, I’ll ask you to advocate for this hear podcast. All you need to do is to tell a friend to tell a friend that they can find Reid My Mind Radio wherever they get podcasts.

Transcripts and more are at ReidMyMind.com.

And as all good advocates know,
That’s R, to the E, I,… D!

Sample: “D, and that’s me in the place to be!” Slick Rick.

TR:
Like my last name.

Audio: Reid My Mind Radio Outro

TR:
Peace

Hide the transcript

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.

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

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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!

Hide the transcript

TReid:
What’s good everybody, back this week with another episode of Reid My Mind Radio and I’m very excited to bring you this latest piece produced for Gatewave .

You may think the title says it all, but there’s more…

Take a listen and I’ll be back with some thoughts.
[“Ladies First”, Queen Latifah]
[Reid My Mind Radio Musical Intro]

TReid:
Young Ant in the building!

YA:
Young Ant in the building!

Treid:
Uh Oh!

So the way I look at this; Antynette is the person, Young Ant is the rapper!

YA:
[Laugh!] Yeah, that’s right!

TReid:
Alright, so first who is Antynette?

YA:
Antynette is a young lady who has been through a lot in a little bit over a year and half and is trying to find her through it with adjusting and coping and in different techniques that I’m learning and trying to find different avenues of expressing how I’m feeling.

[Intro to “Count your Blessings” by Young Ant]

TReid:
Beautiful!
I lost my sight about 13 years ago. And so…

YA:
Really!

TReid:
Yeh so one of the things that I like to hear from people adjusting to blindness is that they don’t first start with who they are with the fact that they are blind. You said you are a young lady!
Now, tell me who’s Young Ant?

YA:
Well Young Ant is a motivational rapper!

TReid:

Maybe that’s not what you expected to hear from an upcoming rapper.

Or perhaps your image of what it means to be blind
makes it difficult to understand how this young lady
who lost her sight only a little over a year ago can talk about counting her blessings.

Well, we’re about to challenge your perception today of both
what it means to be blind and what it means to be a rap artist.

Antynette Walker, 19 years old, lost her sight in the middle of her senior year in high school.

Marsell:
Antynette was born prematurely and she had eye surgery done on her eyes at the age of 1 to correct her vision. They told me that her eyes will be just perfectly fine; in which they was over the years.

TReid:
This is Marsell Walker, Antoinette’s mother.

At 11 years old Antynette began losing her vision.
Living in Atlanta at the time Marsell began searching for a reason for her daughter’s vision loss.

Marsell:
We started taking her to different doctors, getting different tests run and no one could tell us a reason why this was happening to her eye. They just kept prescribing different glasses for her eyes and after the years went on we just started coping with her losing vision in her left eye at the age of 11.

TReid:
In 2015 Antoinette began experiencing complications in her right eye.
Still seeking that diagnosis, the family moved to Minneapolis where she was first being treated at the University of Minnesota.

marsell:

He really didn’t see any dramatic changes within her vision from when she started seeing him. And she was going in complaining about the blurriness and spottiness and these were the same symptoms and things that she was going through at the age of 11 when she lost her vision in her left eye.

He somewhat tried to make it feel like she was hallucinating and it was all in her head and she knew off hand that it wasn’t so she asked me to get a referral to a newer doctor which is at the Mayo Clinic in Rochester.

TReid:
Seen by Ophthalmologist’s, Neurologist and other specialists at the Mayo Clinic, doctors had a very different opinion from the original doctor at the University of Minnesota.

Marsell:
That’s when they did notice her vision was changing dramatically. And he couldn’t even figure out why that previous doctor would tell us he seen no changes.

TReid:
Despite all of the tests that came back negative and the eventual diagnosis of Optic Neuropathy

Marsell:
She woke up not being able to see anything and that point he asked for us to do Steroids with Antynette for about a week… it didn’t work!

TReid:
That day she woke up blind, was Christmas 2015!

TReid in conversation with Marsell:
I mean, you’re her mom, and you’re watching your daughter lose her sight.

Marsell:
Yeh!

TReid:
What was that like for you?

Marsell:
It was really, really stressful. I have always been that parent who where if something is wrong with your kids you find a way of fixing it.
Your kids feed off of your energy, so I had to keep being positive. I’ll go in my room I’ll cry, I won’t let her know I was crying. I’ll come back out and as if nothing happened, but you know I didn’t know what to do. I was just numb!

TReid:
This was her senior year in high school.
Antoinette should have been thinking about the prom, her future.
Now she had to return to school after Christmas break, to a whole new way of life.

TReid in conversation with Young Ant:
What was that first day of school like for you?

YA:
Well, it was hard. Everything was much louder, it was just harder to navigate through crowds and different hallways. It was so much anxiety the first day going back because it was just new way of life, new environment, everything was just all brand new.

TReid in conversation with Young Ant:
What was the reaction of your classmates?

YA:
Everyone was shocked. Everyone was surprised . People more so didn’t believe it because they were just like last time I saw you you were able to see now you’re blind. More people were stand offish kind of and some people were supportive because some people knew what I was going through and knew that it was gonna happen and because we were that close and we talked about it frequently. But some were rude. I think that was mainly because they didn’t know how to take it and they didn’t know what was a proper reaction.

TReid in conversation with Young Ant:
That’s a mature response from you in terms of how you responded to those people who were being , you know, negative.

YA:
There’s going to be some people that you know, they don’t know any better or their parents didn’t teach them any better so there gonna you know make fun or say things that are inappropriate, but you gotta just learn to ignore it. Some people are for you, some people are against you. Not everyone is gonna be on your side.

[Song: “Team Ant”, by Young Ant]

TReid:
On the same side; like on a team!

Team Ant! That’s the official name of Young Ant’s crew, her support system her family.
working with her throughout this new journey.

Team Ant consist of her Dad,Aldo…

Marsell
He’s focusing on making her greater. He’s there hands on. It’s her message, but he knows a lot about rap so he has a big input on her delivery.

TReid in conversation with Marsell:
And are you playing the role of manager/marketer? What’s your role?

Marsell:
I am “Momager”

TReid in conversation with Marsell:
Momager
, ok! {Laughs}

Marsell:
[Laughs] It’s a new word for me

TReid in conversation with Marsell
I like it!

Marsell:
Hooking up photo shoots and videos hooking up studio time and reaching out to different people to try and get her story out there. And her father is the one that comes and oversee everything and makes sure it sounds right.

TReid::
The oldest of 4 siblings, setting an example for them is really important to Antynette.
She’s working hard at improving all of her skills. That’s Braille, navigating with her white cane, independent living skills and learning to use a screen reader and computer.

Traditionally, One of the most important aspects of being a rapper is writing your own rhymes.
At least, if you want any true rap Aficionado to take you seriously.

I had to ask…

TReid in conversation with Young Ant:
Are you writing your own rhymes right now?

YA:
Yeh!

TReid in conversation with Young Ant:
You’re like yehhhh!

YA:
[Laughs]

TReid in conversation with Young Ant:
How do you feel about the writing? Does that mean something to you as opposed to having others write your rhymes?

YA:
Yeh, Because before I went blind I was a big writer. I wanted to be a novelist. I used to write short stories and poems and different things of that sort. So I feel like you know with me losing my sight it doesn’t mean that have to stop doing what I love doing. Now I have to be more repetitive when I’m writing the stuff so I can remember it.

TReid:
In any art form, early influences can help develop an artist’s own unique style.

YA:
My father is a rapper so I kind of grew up around music and rap music. Growing up around him, listening to him rap. Growing up in Atlanta, Georgia I just grew up listening to it. Artists like Biggie Smalls, Tupac and Run-DMC and you know Snoop Dogg

TReid in conversation with Young Ant:
Very nice!.
See, I made my kids, both of them, they had to learn some early Run-DMC… I’d make them learn the lyrics…

YA:
Laughs…

TReid in conversation with Young Ant:
For real! I ain’t joking!

YA:
Right, get to the roots!

TReid:
Based on the artists mentioned I’d say Young Ant has some knowledge of rap music’s pioneers. She likes lyricists, music with a message and showmanship.

YA:
I like to call myself a motivational rapper. I’m mainly aiming to inspire, to motivate, to let everyone know that no matter what you’re going through and no matter what happens that doesn’t mean that your life stops just because you’re diagnosed with a certain thing or something traumatic happens in your life. People in society tell you that you can no longer go on. You can be whatever you want to be and you can do whatever you want to do if you set your mind to it. All my music is positive and clean. You know fun, uplifting and motivational.

TReid:
She’s gearing up for some live performances later this year. Like the South by Southwest festival in Austin Texas and Coast to Coast in Atlanta.

TReid in conversation with Young Ant:
How do you navigate the stage?

YA:
Usually, I go on before to get a feel for the stage you know to see how big it is to see what I’m working with. And then you know once I get a feel for how big or small it is , I kind of just you know [exhale!] let loose!

TReid:
Young Ant is just getting started and open to collaborating with other artists.

YA:
I would love to do a song with Stevie Wonder. That’s like the top of my list.

TReid in conversation with Young Ant:
Hold on, you’re a Stevie fan too!

YA:
Whatttttt?

TReid in conversation with Young Ant:
You’ve always been a Stevie fan?
I love Stevie… yeh! Even before…

TReid in conversation with Young Ant:
Now I’m gonna test you. You’re talking to a real Stevie head right now. Tell me what you like. Give me a song.

YA:
[Sings Isn’t she lovely, isn’t she wonderful]

TReid in conversation with Young Ant:
Ok!

YA:
I like Superstitious! That’s that’s my jam!

TReid:
There’s definitely something wonderful about this young lady.
Maybe it’s the inner strength that shines through her words and personality.
The determination that’s helping her adjust to blindness and pursue her goals.
She has the courage to make her way in quite honestly what’s a male and able bodied dominated genre
in the entertainment industry
which by the way, has never been that open to disability.

Young Ant though has a team.

[Song: “Team Ant”, by Young Ant]

A support system that’s lead by the two people who love her most, mom and dad.

[Song: “Count your Blessing” by Young Ant]

That’s an asset whether adjusting to blindness or starting a music career.

To listen to this track called Count your Blessings go to Sound Cloud and follow her on social media.

Let them know Momager!

Marsell:
Young Ant, first blind female rapper. You can find her on YouTube as Young ANT. On Twitter , Sound Cloud, Instagram as YoungAnt1121. Her Facebook page is Team Ant.

I’m Thomas Reid…

[Audio YA: I kind of just you know, let loose!]

TReid:
For Gatewave Radio, Audio for Independent Living!

[Sound of Record rewind]
This is why I like producing this podcast.

As a father of two incredibly gifted, intelligent and beautiful young ladies I was drawn to this story.

I understand the value of speaking with someone who has walked in your shoes.

Graduating high school is the time when you look to a future hopefully full of opportunity
. For Young Ant and anyone faced with the loss of their sight or any disability for that matter,
it’s natural to think that the opportunity has faded away.

All it takes though, is a glimpse of chance or hope to peek through.

That could be a small success.

Young Ant is only one year into her adjustment process.
Honestly, to some extent I think that process is lifelong. Not like a life sentence, but rather like a commitment.
A commitment to living the best life possible;
seeing happiness not as a destination but a daily process.

Now, you know what’s not a daily process?
subscribing to this podcast, Reid My Mind Radio…
For real though! All it takes is a couple of steps;
go to your podcast app, search for Reid My Mind Radio… that’s R E I D
and then hit subscribe.

Then become a fan!
I ‘m talking about young ant, but feel free to become a fan of the podcast too!

Seriously, I hope you all heard the character, strength and maturity like I did and become a fan of both the young lady, Antynette and of course, the rapper Young Ant!

[Song Roxanne Shante: “Got the party people screaming… “Go on Girl.!”… from “Have a Nice Day”}
Reid My Mind Outro Music

TReid:
Peace!

Peace!

Hide the transcript