Posts Tagged ‘Denial’

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:

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Tell a friend to tell a friend.

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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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