Archive for the ‘General’ Category

They Call Me Marcy’s Son – A Eulogy

Wednesday, February 24th, 2021

Marcelina Reid, my mom, a tan skin woman with salt and pepper short hair standing in an off white and tan lace dress, poses in front of a stream with low green shrubs with a building reflected in the water.

My mother Marcelina passed away this month. I always wanted her to come on the podcast to have an open conversation around the topic of adult child/parent relationships after Vision Loss or disability. But Mom was from that generation that didn’t really get into those types of conversations, especially with their sons. I tried off microphone before and it wasn’t happening.

I felt the need to share some of these feelings and I know many of those adjusting to Vision Loss will see some of their own relationships in my experience with my mother.

My mother Marcy, the woman who raised me. My partner in silliness! probably my introduction to stories and the person who taught me how to find the good in bad situations. Yo soy El hijo de Marcy, Marcy’s son!

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Transcript

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— Soft ambient music begins

TR:

Hey there Reid My Mind Radio family! Much love to you all!

It’s your brother Thomas here on the check in…

If this is your first time joining the podcast, I’m the host and producer. Twice a month, we bring you compelling people impacted by all degrees of blindness. Every now and then I bring you stories from my own experience as a man adjusting to becoming Blind as an adult.

Today’s episode sort of falls into that last category. But I’m considering this a special episode.

Audio: Reid My Mind Theme Music

TR:

In the intro, I said we bring you this podcast twice a month. Well, yes there are times when that’s not true, usually though, I let you know when a brother needs a bit of a break.

This month, I had to change it up a bit.

My mom passed away and I didn’t want to release an episode that was actually ready to go.

I usually include some social media promoting of the episodes after each release, I didn’t want my public voice talking about the podcast while my private voice was grieving the loss of my mother.

On multiple occasions during the life span of this podcast, I wanted to have my mother on as a guest. My mother was very charismatic and actually quite funny. I know she would have been really entertaining, however, my real goal was to get some insight into the relationships between children who become Blind as adults and their parent or parents.

Unfortunately, my mom was from that generation that didn’t talk much about that sort of thing.

My mom as far as I know continued to blame herself for my having Retinoblastoma as a child. Me losing my left eye as a baby I know had a tremendous impact on how she treated me in comparison to my older siblings.

So when I had to tell my mom about the tumor found behind my right eye as an adult, that wasn’t easy for me to do and I know not easy for her to hear.

— Soft melancholy piano music begins —

“Put it in God’s hands!”, was her response. Five words I’d come to hear throughout my life. As an over analyzing, action oriented young man this phrase never really sat well with me. My interpretation was that it didn’t mean much if we ignored the conversation about what we should do about the problem.

Mom didn’t say much in this situation with her words, but I realized her actions actually completed what I needed to hear. She was always ready to do whatever was required. You need a ride, she’d drive. You need someone to watch the girls, she was on her way to the house. Quiede comer? Do you want to eat? If yes and actually even if you didn’t answer, she’d cook up something just in case.

— Soft melancholy music fades to an end —

Being Blind around my mom was personally really difficult for me. As a man, I want to be seen as a protector of my family. My immediate family, my wife and girls see me that way. Whatever is necessary they know I’ll do.

We know for example, driving, for those who lose their sight as adults is one of the most difficult things to give up.

We hear about the loss of independence. I stopped driving immediately when I knew I could endanger my family and others.

As a little kid, I remember watching my Dad and the older men in my family pack up the car, discuss the best route to take and then pilot us safely to our destination. Honestly, it wasn’t just men, my Mom and aunts often did a lot of driving. It’s something as a young boy to watch other older men that makes me see myself in that role someday. One of the reasons I probably loved taking road trips with my family before my vision loss.

I remember watching my older cousins chauffeur their mother and think that was the coolest thing ever. I loved how they’d get out the car with their car keys in hand, appearing almost like a body guard for their mother.

Being a protector of my mother could also mean just being there for her and helping her get things done.

A few months before my second Cancer diagnosis, my brother passed away. I got the call while at work. I stopped everything and went to my mother. I always kept a copy of keys to her apartment with me in case of an emergency.

I opened the door. I can still see the image of her sitting on a chair in the foyer just a few feet from that door to the apartment. She just sat there alone crying, looking as though she was waiting for someone to come through the door.

I felt proud to be that person for her. Arriving in time to take care of everything that she needed. Making the arrangements, answering questions, taking the phone calls. She later told me how much she appreciated me being there. Of course, I didn’t want my brother to leave before my mom, she already lost my oldest sister 25 years earlier. I was however very thankful I could make it easier for her.

Then just a few months later, it seemed like I’d never really have that chance to be seen the same by my mother.

After becoming Blind, the way she responded to me felt like she could never see me as that strong adult able to take care of her. Rather, she wanted to be the
care giver. Even though it wasn’t necessary.

“Quidau!”, she’d say over and over. Be careful as I get up from my seat. I’m fine Ma! I’d say in frustration. “He’s fine Ma!” my wife, Marlett would offer knowing I was growing more irritable. “Abuela” Daddy’s fine!” my oldest daughter would offer in my support.

This scenario would repeat as often as we were together. It took place in my own home, in her apartment – where I grew up. It took place in public which was ten times worse for me. to handle. It was as though not only could she not see me in a strong male role, but it felt like she pointed that out to anyone inevitably watching.

She tried to get better about that. I know Marlett tried to explain how that made me feel, but it was just who my mother was. I would always be her baby! That I can understand now with babies of my own, but it never really made it easier for me. I never again felt as though she saw me as someone who would protect her as she did me when growing up.

My sister Camille had the chance to be there for Mommy in the end. My mother lived with my sister and her family in what became her final years. Cam and the rest of the family did great in keeping mommy safe and healthy as she could be. She remained by her side through her last breath.

— Calm music begins which opens to a steady rhythm —

If it wasn’t going to be me there with her then I’m so thankful it was my sister.

During the wake we set aside some time to celebrate my mom’s life. We invited family and friends to share any memories or stories of my mom.

During this celebration, I had an opportunity to Eulogize my mom. I didn’t get to actually do it the way I think it should have been done so I’d like to share it here as a way to hopefully share some of that incredible light my mom shined on all who met and knew her.

Eres el hijo de Marcy

When we were growing up, random people in a pizza shop, supermarket perhaps or in front of some building in Co-op City in the Bronx would confirm that fact.

You’re Marcy’s son?

At that time, it meant I had to be careful.
I had to be on my best behavior because if my mother found out I was doing something I shouldn’t have been doing,
that would be bad enough. But finding out from a friend, I think that would have been way worse.

But being Marcy’s son, daughter or anything for that matter, to me means you benefit in some way from some of what she had.

You have to begin with strength.

That’s strength and courage to experience adversity and remain faithful in what you believe.
That’s what she did after burying two children way before their time. Plus losing her husband of 31 years.

It means, being stubborn. Incredibly stubborn.
But that’s conviction. Because everything she did was done with passion.

it’s an incredible sense of humor,

Honestly, some of that can be a bit crude and
while I don’t think she’d mind, I won’t go into specifics.

Mommy, could laugh at her own ways and flaws.
Never taking herself too seriously.

Mommy, was just so silly!
As little kids, you never knew when
you might turn the corner in the apartment and
there she was. Waiting on you.
Sometimes she was in one of those facial mud masks.
Other times she’d put on this orange alien looking mask.
She’d raise her hands in that supposed to be scary monster attacking pose while growling.

Even in more recent times, I know if
I ever needed anyone to act silly with, Mommy would never disappoint.

My Mom was a natural storyteller.

Those who had the chance to experience it definitely remember, Story time with Marcy…

It could have started with something simple like, let me tell you what happened today…

But, if you’re lucky, it began with a meal in her kitchen. That in itself is a gift!

If she was in the mood to share a story, alright, who am I kidding? it didn’t take much…

Mommy, tell them about the time… that could be anything.

I’m talking about either her childhood stories from Puerto Rico or
some of the early adventures in 1950’s New York City.

Mommy told stories in 3D.
She didn’t just tell you a story,
she brought you into it with sound effects she made up on the spot.

Panga na could be a crash, a punch…

She make these big , over exaggerated movements to illustrate or re-enact.

Sometimes, you might even be used as a prop.

Veng aki, as she pulls you out of your seat.

Of course, she had an action packed and dramatic tale.

you might wonder if she was embellishing.

That is until you experience something with her in life and you realize, oh no, those stories are true.

Marlett, Riana & Raven and Mommy were all hanging out at the mall.
I’d say about 8 or 10 years ago. Mommy had to be 75 or 77.

When they got home, the girls came and told me;
Daddy, Abuela got into a fight with this lady at Arthur Treachers.

That’s not news to me!

It wasn’t really for them either because they heard the stories of her past.
But now, after seeing her in action, there would never be any doubt as to the validity of those stories.

They believed her stories about her athletic prowess because at around 75 years old
they watched as she outskated a much younger woman at the roller rink. Because my mother was incredibly competitive.

But her best stories come out of her just being herself.

— Music ends —

When my sister Camille and I were young kids, Mommy
would tell us something then say, like a friend says and proceed to elaborate on something or explain

It was a very frequent thing.

Cammy and I would sort of look at one another …

Privately we’d wonder,
how many friends does mommy have?
Are they the same people always telling her these things?
Just something we wondered about for years.
It wasn’t until we were much older when we came to realize,
Wait, say that again, mommy,

Like a friend says

One more time

(exaggerated)Likay For instants

Mommy was saying for instance. All these years, it was just her accent that made us think she was saying like a friend says

I got into lots of trouble because of that accent.
Like the time she sent me to the store for Epson Salt and I came home with Eggs and Salt!

Teasing my mom and imitating her accent was and will always be one of the things that bring me joy.

As a kid, it got lots of laughs from her and my father so of course I continued.

Now, don’t get it twisted, my mom was to be taken seriously. She just had a cool way of combining the serious and the sweet.

As a child growing up dealing with lots of invasive doctor visits and exams under anesthesia, Mommy made them special. But first, she had to teach.

At each appointment from the time I was very young, it was my responsibility to sign myself in at the doctor’s office,
make sure no one was being seen before me,
even ask them to put the next set of drops in to assure everything stayed on schedule
I hated it because I was the only child doing that.
Isn’t this your job, I thought!

I realized later what she did and why.

She was a natural fighter and wanted to make sure her children were capable of standing up for themselves.
Showing me, not telling me how to do it!

But every visit was followed by either two hot dogs, a soft pretzel and a bottle of my favorite drink, Yoo Hoo, at that time.
On more special occasions, she’d take me to a restaurant. We shared memories of those times together later in life.

I looked forward to these appointments and
later learned how different that was from how other kids experienced these things.

Mommy, was an optimist.
She saw good in people but at the same time
she’s not going to fall for your nonsense.

— DJ scratch launches into a smooth beat! —

“So where you from?”

TR:

She was small, yet strong.

Definitely a bit heavy handed sometimes, but yet she had a delicate touch.
As a child it made everything better.
So much so that as an adult you still sought that comfort she could provide.

— “Marcy Son! Just thought I’d remind y’all!” Jay-Z lyric pans from left to right —

TR:

She was Mommy to my sister and I , Abuela to her grandchildren, Chela to her siblings and those who knew her back in the day.

If you knew her, I’m certain Marcy was someone special to you.
chances are you were impacted by her in some way.
even if you were the woman in Arthur Treacherss.

No seriously, on multiple occasions after the argument almost turned brawl, they’d see each other in the mall. And my mom would stare her down.

Esa vieja or the old lady as my mother called her, meanwhile I’m pretty sure my mother was older than her.

Today, something is and will forever be missing
not only in our families hearts
but honestly, the world feels a little emptier without her here.

There’s just places she’s supposed to be…
A family gathering, a rosary in her apartment, planning something here at Saint Michael’s .
That makes me very sad

But I’m so proud and happy that I will always be
El Hijo de Marcy, Marcy’s son!

— DJ scratch leads into “Marcy Son! Just thought I’d remind y’all” panned left —-

— DJ scratch leads into “Marcy Son” panned right—-

TR:
R E I D!

(D” and that’s me in the place to be, Slick Rick)

TR:

We Love You Mommy!

— Reid My Mind Radio outro

TR:
May you rest in 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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Transcript

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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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John Samuel: Guided By Angels

Wednesday, August 5th, 2020

Head shot of John Samuel - Chief Innovation Officer, LCI Tech

John Samuel  on Mount Kilimanjaro
Some people call it luck! others see a more divine force guiding their life. John Samuel, Chief Innovation Officer of LCI Tech recognizes the latter. His vision loss began early in life but it was never realized or discussed at home. Hear his adjustment to blindness journey that included adventures in India, Cameroon and more. While our lifes are more about the journey than the destination; yet, in this case where he ends up is truly part of his story.

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Transcript

Show the transcript

TR:

Do you believe in angels? Something that you can’t see or touch that you just know is looking out for you? Maybe we just don’t recognize them?

Makes me think of this story I heard a long time ago. It’s about a man who gets stranded at sea. He’s a strong believer and is absolutely sure God will save him. As he patiently waits, a man on a row boat comes by and offers him help. He explains that God will save him and tells the man to row on. Then a motor boat comes by and offers some assistance,
again he exclaims his faith and tells the person to motor on. Finally, a rescue helicopter comes by to save him and once again he turns it down as he is faithfully waiting for God to save him. No one else comes after that and he dies. Upon meeting his maker he explains how he lived a faithful life and thought he’d be saved. God says; who the hell you think sent that row boat, that motor boat and that helicopter?

Adjusting to vision loss and disability really does require us to see through things we are presented in life.
Find opportunities. Recognize the angels. And say thank you.

Reid My Mind Radio family, I’m Thomas Reid, your host & producer.
I’m thankful for you all.

Get ready for a goodie! Let’s go!

Audio: Reid My Mind Theme Music

JS:

My name is John Samuel. Chief Innovation Officer for LCI Tech

TR:

As you’ll soon see, his vision loss journey which began at 9 years old, wasn’t one he necessarily traveled alone.

JS:

I was living in Japan and during the summer time we’d come back home to the US. I remember going to my uncle’s house in Boston and one summer remember seeing the stars and the next time I came back the stars were gone. I think that was the first moment I noticed that something was changing.

TR:

John struggled to communicate the changes to his parents. The vision loss however continued and became more noticeable when he was in high school.

JS:

I just thought I was a bad basketball player. I thought I was a bad driver because I was getting into accidents and things like that, but what was happening was my vision was changing.

The fact that I was a child of Indian immigrants where the mentality is you work hard. And because I didn’t have any family history of vision loss I think it was something that my parents didn’t understand there was something wrong with my eyesight they thought maybe I’m just not working hard enough at school. Maybe I’m not working hard enough at whatever it was that I was having challenges with when actually I was losing my sight.

But when I got to college that’s when it was like there’s something going on that isn’t right.

TR:

Living with undiagnosed vision loss and trying to lead a “normal” life means John found ways to compensate. Even in areas where quite honestly, he shouldn’t have.

JS:

When I was in college, I always knew what time sunset was, because if I didn’t leave by dusk I wouldn’t be able to find my car and if I did get to my car and it was too dark I wouldn’t be able to drive . I may hit a student if they’d been walking down the road. At the same time I was working part time at Wachovia bank as a Teller. I would wait for everyone in the bank to leave. I didn’t want anyone to see me because I was going over curbs, everything to get on the road.

I memorized the roads. I knew where I had to go. I followed the tail lights. And I would just essentially tailgate somebody all the way home. There was always this sense of relief that I made it.

TR:

John’s “adaptations” aren’t at all uncommon; however, he describes his actions a bit differently today.

JS:

In hindsight it’s a selfish feeling of I just made it because not only did I just make it, all of those other people on the road also just made it and they didn’t even know.

TR:

While attending Virginia Commonwealth University, John was diagnosed with Retinitis Pigmentosa.

JS:

I did not cope with that news very well and my actions led to me failing out. I found myself coming back home to North Carolina.

TR:

Watching his friends graduate from college and move into the next phase of their lives inspired John to finish up school.

JS:

I knew I wasn’t going to be able to stay in North Carolina because I couldn’t drive. I took an opportunity to go out to Bangalore India and work in corporate finance for a software company out there.

TR:

Working internationally was never foreign to John.

JS:

My parents immigrated from India in the late 60’s. My Dad went to college up in Massachusetts. He got a job with Nortel in Canada. That brought him down to North Carolina where I was born. His career took him to Japan. He eventually went out to India for a few years. He was overseeing a lot of global research and development for the company. And that’s where it got me my exposure to international business, which was why I knew after I graduated from college I wanted to go international.

TR:

There was also a very practical reason.

JS:

I could get a car and driver in Bangalore India in my salary I was going to be making. I spent around two years there. I felt that it was actually the most difficult time in my career. Being an Indian American going to India it was a different type of stigma, a different type of challenge I had to face. I was seen as an outsider in a country where my origins were from. The workplace was very challenging, they work very long hours. I learned a lot and after two years there I had accomplished what I wanted to there and I decided to come back to the US and I moved to New York City.

Audio: A montage of NYC sounds; Subways, street sounds…
Audio: New York, Alicia Keys

TR:

Come on, you know that was going to get a reaction from me.

John worked for the city providing financial education for city employees during the recession. This required him to travel throughout the five boroughs giving him an unofficial crash course in mobility training

JS:

How to get on a subway, a bus to walking around. Learning how to trail people. How to come up to the sidewalk using my foot to kind of feel where curves were. Using my sense of listening to traffic patterns. Using all the other senses and queues that I could pick up that weren’t visual to be able to get around. And it’s a skill that I cherish.

TR:

John learned about an opportunity to work for a Telecom. Leading the startup of a new international business. While he did share some information about his vision loss, he admits he did not reveal the full extent of his blindness.

JS:

Night blind at that moment. During the daytime and during the interviews they didn’t see as many issues. The interview went well, they offered me the job, but we went out afterwards to go to dinner after I signed and that’s when they realized I couldn’t see.

[TR in conversation with JS:]

I know you weren’t taking out a white cane because it was dark…

JS:

Oh, listen; I didn’t have a white cane.

[TR in conversation with JS:]

Yeh … laughs…

JS:

I wasn’t using a white cane at all.

[TR in conversation with JS:]

Right.

JS:

I couldn’t track where people were walking in the restaurant. There was some hesitation from people in the company about sending me out to Cameroon. They essentially told me, we’ll give you six months to go out there and do what you can and we’ll wash our hands from this situation. You go your way and we’ll go our way.

TR:

So he set out to Cameroon. And yes, the accessibility challenges began immediately.

JS:

I was flying in the middle of the night and I got out of the airplane and got through baggage claim and was coming out into the airport. Luckily growing up visiting India and other emerging markets around the world, I understood what to expect . There were a lot of people outside, kind of screaming “taxi” and just trying to talk to you to get your attention. I heard someone say taxi, I went over to the person, I told them what hotel I was going to, he grabbed my suitcase and he started walking in front of me. I listened to the wheels of the suitcase as he pulled it in front of me. Getting to the taxi I felt I’m going to be okay.

TR:

He was now equipped with the travel techniques & new confidence gained in New York City. More importantly, he had an adaptive way of thinking that enabled him to find solutions.

He even benefited from the new accessibility built into Windows 7 which allowed him to configure Windows in high contrast mode.

JS:

Everything I was doing was pretty much on the computer. When it came to print outs I couldn’t see them. There was a level of trust of what people were bringing to me and my team. I had an Admin. I’d send her the document, she’d print it out. It was interesting, another contrast level, my Admin was Black so her skin tone against the white paper also allowed me to know where I needed to sign.

TR:

Throw in a mouse that gave him quick access to the built in Zoom features of Windows 7 and John had most administrative tasks covered. For the rest, well, some may say he was lucky, but John and I are going with, he has angels.

JS:

One day I was standing out looking for a taxi and a taxi driver drove by. He had somebody in the car. He told me “go back inside the hotel, I will be right back.” And he dropped off the person he was driving, came back, got me from inside the hotel and he never left my side. His name is Blaise. I joke, he became my CTO. My Chief Transport Officer. When I went into a restaurant or bar, he was always a few stools away from me. He would always watch my back when I went out in the streets of Cameroon Even when I came out of the airplane traveling; he was always waiting for me so no one could take advantage of me.

TR:

Even when it came down to finding office space for the business, something greater was guiding him.

JS:

It just happened that I found a building; it was a new building in Cameroon in Douala that had two towers. One tower was for offices the other tower was residential. I happened to get an apartment in one tower and get the office in the other tower so my commute was nothing. I just literally went down to the basement; ground floor in the elevator walked across and went back up.

TR:

John made sure to note another important part of the success equation.

JS:

My team. It was something we never talked about, my vision loss. What I learned in Africa was that, I mean Cameroon and across the continent, there’s a loyalty for the family. Our team was a family and they were very protective of me and they took care of me.

TR:

Now, watch what happens when talent meets reasonable accommodations and access.

JS:

Within 14 months of that experience we generated 12 million dollars in revenue and 2.4 million in profit.

TR:

Naturally, after building a successful business, what does John do?

JS:

I took six months to travel the world.

TR:

That international travel was already in his blood. Plus, he had personal goals when he set out for Cameroon.

JS:

I wanted to be a top thirty executive under the age of thirty. The other goal was I wanted to reach the top of Mount Kilimanjaro. Reach the highest point in Africa.

It was much more difficult for me than I ever imagined.

TR:

It’s about 5 days of climbing before the final summit. In order to reach the top at sunrise you have to complete the final trek at night.

JS:

My friend suggested that we take the head lamp off my head and switch the color to a red light and we put it on the foot of the guide in front of me. I was able to follow this red light to the top of the mountain. Just like I used to drive home.

TR:

Following his time in Africa, John was ready to return to the states and pursue an MBA.

[TR in conversation with JS:]

Why would you want to go back to business school, because you just built a business?

JS:

I think there are two aspects of this. One goes back to that Indian immigrant up bringing where education is the most important thing. The fact that I had failed out in under grad. The fact that I was never a stellar student. Me getting an MBA was validation. It was something that I felt like I wanted to do to prove to myself that I could do it. Show my parents, you know, I did this.

TR:

Even though John’s work experience included Corporate Treasury and Currency Hedging in India along with providing Financial Education in New York City, he was concerned about competing with his peers for a spot in an MBA program.

JS:

Not to mention I thought that if the university found out that I couldn’t see, I thought that would be a liability.

TR:

No surprise here, during the first week of the MBA program, just another stop along his journey, he’s greeted by an angel guiding his way.

JS:

It was a round table event where we had guest speakers and there was assigned seats for all of us. They had name cards where we had to go sit. I couldn’t see where my name was so I turned to the person next to me and I asked them, I can’t see my name card, can you help me. It happened to be the Dean of the business school, the Associate Dean, Liesl Riddle who was standing next to me. She was the same person who had recruited me to come to George Washington University. She had no idea I couldn’t see. She just opened up and made me feel so comfortable and supportive about talking about my vision loss. She introduced me to Disability Student Services, they were very supportive. I started being much more open about talking about my vision loss with my classmates. The fact that I was able to be my true self, my authentic self, I was able to open up my heart and I met my wife in grad school.
[TR in conversation with JS:]

Do you know anything about the Dean, in terms of her familiarity with disability? The fact that she opened up like that do you have any insight about why that was.

JS:

Yeh, that’s a fantastic question. At the time I didn’t know, but she actually has a son who has special needs. She could empathize with me. She understood the challenges. She’s just such a loving person and is one of my biggest supporters and advocates in my life.

[TR in conversation with JS:]

And you just happen to be standing next to her. There’s such a pattern with you.

JS:

I know man; I can’t make this stuff up. I got angels all over the place and it really is something special. And I am thankful cause, I am not the smartest person , I’m not the best person, but I have the best people around me and the smartest people around me and that’s what I’m blessed with.

[TR in conversation with JS:]

That must be why they continue to appear for you. You acknowledge it and you’re thankful.

TR:

John began Grad School with a high level of confidence. Yet as he approached graduation, interviewing for different positions, he wasn’t finding much success. With an assist from the Dean he landed a position in a crowd funding company. He worked there for 3 years until the company folded. Meanwhile, he and his wife Nicole built a home in the Washington DC area and were expecting their first child. Stack these three life events together and you can imagine what you get.

JS:

Immense stress and it caused my vision to deteriorate even faster. At this time I was still using that inverted color screen and the magnification was getting much bigger. It was getting to the point where I couldn’t see the screen. I fell into really dark times. I hadn’t felt this bad since I first found out.

TR:

About his vision loss diagnosis.

Pairing the increase in vision loss with a lack of appropriate mobility training, John became more reluctant to go out.

While listening to a podcast, no not this one, that would make this story even better, John heard some advice that resonated with him.

JS:

Chef Jose Andreas. He made this comment “luck can’t find you unless you keep moving.” Keep moving became my mantra for the rest of the year.

TR:

If you’re not familiar with Chef Jose Andreas let me encourage you to read about the great work he is doing around feeding people especially during various crises.

Then a friend sent him an article about a new software developed at SAs using sound designed to help nonvisually access graphs and charts.

JS:

The most interesting thing to me was the fact that it was designed by a guy named Ed Somers who had the same eye condition as me and lived in my hometown in North Carolina. Up until this point I had never met another Blind person and I knew I had to get in touch with this guy.

TR:

He tried unsuccessfully for months. His wife Nicole decided if Ed could live in North Carolina, then maybe they could too.

JS:

So we found a house online and told my parents. They got so excited they thought I was never coming home. As we’re talking to my Dad on the phone, he jumped in the car and started driving to look at the house. As he was driving, he started yelling at something. I said what are you doing Dad. He said oh, there’s a Blind guy in the road, maybe it’s the guy you’re trying to get in touch with.

He gets out of the car and walks over to this guy and says are you Ed Somers. And the guy says…

Audio: “Hold Up”, Nate Dogg, Next Episode

JS:

“Yes, I am!”

My Dad just puts the phone to his ear and says my son is trying to reach you.

After apologizing to him profusely he agreed to meet me and I came down and met him.

He understood where I was coming from and where I was going.

We were having coffee and he was making all of these introductions and sending out all of these emails and I’m wondering how he is doing this with an IPhone. I had no idea about Voice Over and he’s just speeding along making all these messages. That’s what was really the introduction of accessibility.

TR:

John continued traveling monthly to North Carolina in order to meet with Ed.

John had his own entrepreneurial ideas.

JS:

I want to make sunglasses. I want them to be made by somebody who’s Blind because if I can give someone a job I could give them hope. I could give them a life and that could be generational impact. I was talking to Ed about this and he introduced me to the president of LCI. Who knew that the largest employer of American’s who are blind was just seven miles from where I grew up.

TR:

In July2017 John met with the president of LCI Jeffrey Hawting, to discuss his idea of manufacturing sunglasses. Jeffrey however, was interested in creating more technology service jobs. The two agreed to keep in touch.

Meanwhile, John had taken Ed’s advice and had been pursuing positions at companies seeking to hire candidates under diversity and inclusion initiatives. There were multiple attempts but they never even landed John an interview.

JS:

If I can’t find a job with my education, my experience and my privilege, I can only imagine what other people who are Blind were going through to find a job.

TR:

On August4th, 2017 John and his family moved to North Carolina despite not having a job.

JS:

One piece of advice that Ed told me was if you want to continue your career trajectory you’re going to have to learn as a person who’s Blind. I said alright I’m going to learn how to use a screen reader and that was the day I said no more using my eyes. That was August 4th and that happened to be the same day that Jeffrey sent me an email saying there was a job opportunity. I joined LCI to startup a new technology service business which is now known as LCI Tech.

TR:

All of this in just six months after first reading the article about Ed Somers and the SAS software.

JS:

I went from the darkest moment in my life to the start of a new chapter that has given me a new perspective of life. A life that I could not have even imagined with less sight and more opportunity.

[TR in conversation with JS:]

Talk to me about those six months because I know how you felt. To go through and get to that point in six months, I mean you had to be flying high.

JS:

You’re right. From that darkest moment there’s lots of tears and that’s when you know you have a great partner. Our first son was born in February. March 11 is when I got that article and there were lots of tears. I was having so many accessibility challenges it would literally take me the entire day to complete one application for a job. Nicole would after her maternity leave go to work, pick up the baby from day care, nurse the baby do all the mom stuff and then apply for jobs for me. That’s an amazing partner. She was doing that every day. I wasn’t getting any responses. Nothing, I didn’t get a single interview.

[TR in conversation with JS:]

I just want to be clear about this. So you were contacting places that were looking for diversity. The diversity that you were going in as because you’re Indian American you said right?

JS:

Yep!
[TR in conversation with JS:]

You were specifically saying visually impaired, Blind whatever.

JS:

Yes, at this point, after meeting Ed I was now saying I am Blind, but I feel like I wasn’t checking a box that they wanted me to check off. I was reaching out to all these folks talking about disabilities and helping with jobs and nothing. I think that’s what’s also been fueling me to what I’m doing today and the change that I want to make.

[TR in conversation with JS:]

Talk to me about what you’re doing at LCI Tech.

JS:

Our whole mission is to create employment for people who are Blind and the broader disability community in the knowledge economy. These are service based jobs, technology based jobs. These are jobs that are paying.

My hope is to get people paid and get people into a much more comfortable life. And essentially we’ve been talking about it our goal at LCI Tech is make sure that people who are Blind don’t miss out on all aspects of life.

We’re doing that in three ways;
By eliminating the digital divide
Creating pathways for employment
By changing the mind sets of people in companies

[TR in conversation with JS:]

So let’s take the first one, the digital divide.

JS:

We need to be able to address the digital accessibility piece by hiring people who can conduct tests and assessments of digital content. That’s the first line of business that we’re starting. The hope is that by having a team of accessibility professionals we can then go into companies and help make sure that their process and procedures are accessible and accommodating for people of all abilities.

TR:

Let’s say LCI Tech’s mission of making sure blind people aren’t missing out on life is an apple pie. The recipe therefore is the three ways John mentioned. That first, tackling the digital divide is like the pie shell. The recipe calls for preparing the shell in order to add the delicious filling. In this case that’s creating pathways for employment

JS:

A pre-employment work force development program. Making sure that young people who are in high school thinking about going into college or going into the workforce, that they’re going to have the job skills that they need to be able to go into them and also be successful at it. That includes soft skills and technical skills. My hope is to first get it working in the state of North Carolina then this model should be able to be scaled more across the nation.

TR:

The idea here is to provide students with year round opportunities to gain real world experience. Teaching not only the technical skills but also things like interacting with others and all of the soft skills that go along with that.
JS:

Whether it be through an internship or some type of real life scenario where students are taking what they just learned and putting it into action and seeing what the outcomes look like. And seeing. I hope to bring in companies and business into this whole learning process. So not only are students getting to interact with professionals, but companies are also going to build that empathy of understanding the talents of students with disabilities and students who are Blind.

TR:

Learning from the success of other programs and experts, John’s in no way trying to reinvent the wheel. In putting together this proof of concept, he’s starting at home.
At home.

JS:

The Superintendent of Wake County Public School was actually my Vice-Principal when I was in high school. She had no idea I couldn’t see when I met her recently. The only reason she took the meeting was that she remembered my name. The only reason she remembered my name was because I got into trouble when I was in high school.

[TR in conversation with JS:]

Laughs…

JS:

If I was a good kid and didn’t get in trouble I would never have gotten that meeting.

[TR in conversation with JS:]

Alright, one up for the bad kids!

JS:

Laughs…

TR:

Me? No, I wouldn’t know anything about that!

Continuing with that pie recipe; if that shell and filling doesn’t properly bake at the right temperature therefore creating an aroma that makes your mouth water, well, you’re probably not going to be asked to make it
Again.

JS:

The third piece is changing the mind sets of people and companies. Working with companies to make sure that every touch point that they have whether somebody’s from recruitment, to hiring to on-boarding to promoting, working with them to insure that they have a strategy to properly execute a disability hiring program. Eventually it just becomes ingrained into their entire hiring process so that it becomes universal to set everyone up for success.

[TR in conversation with JS:]

How do you sell that?

JS:

I call it godifying companies who get it. The initial companies we are going to be working with are companies who get it, who want it and who have the capacity to do it. You can get it and you can want it, but if you can’t put that time and funding to do this then that’s not what we need to be focusing on right now. We need to find those companies that have those three things. We build on that model, we get that case study and then we show the proven model, others will follow. We’ve got a couple of partners now that we’re working with who I’m really excited about. Hopefully the next time we talk I’ll be able to talk more about it.

[TR in conversation with JS:]

That part is really interesting to me because that’s sort of a piece of what I want the podcast to do. Right, that change the misperceptions and all of that and that’s kind of what you’re doing when you go in and talk about that so I want to know more about that man, when you can talk about it.

JS:

Yep, for sure. Part of the communication piece is the trainings that we do. You kind of have your traditional learning management system trainings, but podcasts, blogs all these different types of content that’s how we’re going to change the stigma. That’s how people take in and consumer learnings and trainings. Your podcast is going to be part of the eco system right. That’s what we need. Because that’s how we’re going to change the stigma.

TR:

That pie smells sweet!

As part of this effort, John has launched his own interview show on YouTube. All Access with John Samuel.

JS:

It’s a show really about sharing the stories of leaders, entrepreneurs and advocates who are improving the lives of people with all abilities. Similar vein of what you’re doing, it’s breaking down the barriers so that people can see that hey there’s a lot of different type of people out there, different leaders different people doing some real cool stuff out there and we just don’t know about them. We need to share those stories, give them a platform. That’s why I’m so thankful for you to give me this platform

One thing I appreciate with yours is that I love the sound engineering. There’s an auditory experience which is awesome.

[TR in conversation with JS:]

Cool, I appreciate that.

TR:

John literally traveled across the globe. Gaining a little more understanding about his own vision loss at each of his destinations. Now he finds himself back home, where he began his vision loss journey. As a nine year old, he wasn’t equipped with the language to explain what he was experiencing. He internalized it and managed the best he could. Now he’s back home working to make sure others with vision loss can find opportunities a bit closer to home.

JS:

Having gone through this myself who knows it better, right? We talk about all those angels and all the serendipitous meetings, me being able to come back home to a place where I never thought I could live and to be able to make this type of change it’s pretty remarkable.

[TR in conversation with JS:]

Yeh, you get to be the angel.

JS:

Yeh, it’s paying it forward right. I could never thank all of those people who helped me get here, but maybe I could help someone else.

TR:

Now that’s what I’m saying!

Salutes to John Samuel, the latest member of the Reid My Mind Radio.

You know you want to learn more about him and the work happening at LCI Tech.

JS:

Visit www.LCITech.com. And we’re also on Linked In and Twitter, @LCI_Tech.

[TR in conversation with JS:]

And are you yourself on Twitter?

JS:

I am on Twitter and I just got on Insta gram. My handle is @JohnGSamuel (spells out) that’s the same for Twitter and Insta Gram.

TR:

What an amazing story. If you’re familiar with the book, “The Alchemist “by Paulo Coelho, you probably already made the connection. If you haven’t read it give it a try.

If you’re a person adjusting to vision loss or disability, I’d love to hear what lessons you take away from his story.

Do you hang out on Twitter? I’m @tsreid.
Drop me an email at ReidMyMindRadio@gmail.com
Leave me a Voice Mail at 570-798-7343.

Call or text a friend and tell them what’s happening here on Reid My Mind Radio. Podcast.

Tell them it’s available wherever they get podcasts.
Remember transcripts & more are over at ReidMyMind.com. And yes, tell them that’s R E ID
(Audio: “D and that’s me in the place to be” Slick Rick)

Like my last name.

Audio: Reid My Mind Outro

Peace!
[]()

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CoronaVirus – So Many Parts

Tuesday, April 21st, 2020

Corona – So Many Parts

Covid 19 and CoronaVirus is the most immediate & serious thing we as a human race have dealt with at the same time. Simultaneously, we’re all a part – as in a community. Yet, we see so many all over the world trying to tear apart any form of cooperation between nations and people – apart as in separate.

It’s been hard to focus on something other than this pandemic, but there is a connection to blindness, to disability… take a listen, I got something to say!

Listen

Resources

Transcript

Show the transcript

Audio: Sir Joe Quarterman- (I Got) So Much Trouble In My Mind

Women yelling…
“I got something to say” (Fades out )
“I got something to say” (Fades out)
“I got something to say” (Prolonged yell fades out)

Ice Cube, NWA: “Yo Dre!”
Dr. Dre, NWA: “What up”
Ice Cube, NWA: “I got something to say”
Dr. Dre, NWA: Scratches on turntable

Lyric from instrumental mixes in… “I Got) So Much Trouble In My Mind”

Audio Sample: “You have got what appears to be a dynamite sound”

Instrumental music…

TR:

Greetings Family!

I’m hoping everyone is healthy, safe, comfortable and optimistic

I’m just trying to find the right words now. Well the right words for the opening I know are …

I’m Thomas Reid, host and producer. of this here podcast known as Reid My Mind Radio.
Bringing you compelling people impacted by all degrees of vision loss and disability.

Every now and then I share my own thoughts and experiences as a man adjusting to becoming Blind as an adult.

Finding the right words to express how I feel about all that is going on today isn’t so easy. The introspection though, can be helpful. It forces me to step back and get perspective. That search for the right words can even inspire a bit of creativity.

Audio sample: “Don’t toot your own horn honey, you’re not that good!”

TR:
I guess you can be the judge of that!

Audio sample: Woman yelling, “I got something to say” (Fades out )

Audio: reid My Mind Radio intro

Audio: Sir Joe Quarterman- (I Got) So Much Trouble In My Mind(continues from intro)
– Musical loop

Audio: Covid19 related News montage

– “It’s been another painful weekend in the CoronaVirus pandemic. The death toll is now more than…” (Fades out …)
– “More than 20,000 people have died from Covid and more than… ” (fading out …)”
– ” “More than 100,000 Covid cases in New York City. There’s also a serious shortage of swabs used to test for the CoronaVirus. That’s according to the city’s health department, which is now telling medical providers only test hospitalized patients.” (fading out…)
– “Perhaps because of The New York Times story, last night saying Republicans were trying to get the President to talk less every day, today’s White House briefing went on for over two hours. The president said some of the coverage is fake news. He said today flatly, everyone has the ventilators they need. He said we’re in great shape in every way.” (Fading out…)
– “Obviously, if we had right from the very beginning shut everything down, it may have been a little bit different. But there was a lot of push back about shutting things down” – Dr. Fauci

TR:

During my intro to the last episode, I purposely kept my thoughts about Covid19 and the CoronaVirus to a minimum.

It’s not as though I didn’t have anything to say, but I like to let my thoughts form fully before getting into a rant or ramble that I may end up regretting.

Today, I hope it’s okay that I share some of these feelings and thoughts I’ve been having, all triggered by Corona!
(stutter effect on corona_

Yeh, that’s right, this Corona has me stuttering. I’m shook!
I’m in no way making light of the situation. There’s just so much about what’s happening that is so ironic.

it’s the most immediate & serious thing we as a human race have dealt with at the same time. We are all a part – as in a community.

Meanwhile, so many all over the world trying to tear apart any form of cooperation between nations and people – apart as in separate.

That got me thinking…
Audio: Music stops… echo…
If this isn’t your first time listening to this podcast, you know that I tend to think about and focus on the process of adjusting to blindness.

Part of that adjustment includes things like employment, technology, orientation and mobility and just learning how to do the practical things.

From my own experience and conversations I’ve had with others, I know a very challenging aspect of adjusting is how we view ourselves after Blindness. Our self-image. It’s why many of those newly blind don’t’ want to refer to themselves that way. blind.

When your only substantive exposure to Blind people isn’t positive, well, why would you want to be a part of that group.

So chances are you wouldn’t see yourself as part of the disabled community either. I get it, I was there too.

There’s the titles we assign to ourselves and then there’s how we’re identified by others.

Growing up, I’d often be asked, what are you Black or Puerto Rican? My self-identification doesn’t separate the two. Those with an understanding of the history feel me right here… Look up Arthur Schaumburg and you’ll see where I’m coming from.

Society has assigned me a label that often dictates how many choose to interact with me.

When I was stopped by the police, .
Ran out of neighborhoods while being called names,
Followed in stores…

I was never asked, what are you Black or Puerto Rican?

However you decide to self-identify, if your vision loss or disability is visible or recognized , society sees you as Blind. Society sees you as disabled.

I’m not here to tell you how to self-identify .

I want this podcast, at the very least to stimulate some thought around adjusting and all that comes with it.

Personally, my belief is that when you get a better understanding of the people the history, expand your understanding of what disability is and isn’t, defining yourself may be an easier process.

With all of that said, there’s a connection between blindness, disability and this pandemic. Even if you don’t see yourself as disabled, it’s worth knowing how this pandemic is impacting the community.

I’d encourage you to go check out RMMRadio alumni Alice Wong’s Disability Visibility project podcast and website for more perspective.

The pandemic’s impact on us all is different. Disability, economics, location, housing… so many factors that play into how this pandemic impacts us.

Audio: Instrumental “Quiet Storm” Mobb Deep

Audio: Covid19 related News montage

– “The Pandemic seems to be disproportionally affecting people of color”
– “African Americans have been hardest hit by the virus. Despite accounting for 14 percent of Michigan’s population they represent 41 percent of it’s Covid victims. And in Detroit where the majority Black population, more than a third of them poor it’s even more stark.”
– “There are many reasons why Black communities are disproportionately being impacted by CoronaVirus according to a range of experts I spoke to. Historic disparities between access to healthcare, education, information and government resources in Black communities compared to predominantly white communities. throughout American history there’s been great tension between Black communities and the healthcare industry. Tuskegee Syphilis experiment. Ongoing studies that show that black women particularly those who are pregnant, are less likely to be listened to by their doctors and healthcare providers.”
– “African Americans are being hit disproportionately hard. We broke down some of the reasons. Medically why do you think that is. (Second speaker-Doctor) People of color are generally more susceptible to diseases and we know that they have those pre-existing conditions; the Diabetes, the heart disease, the asthma that makes them more likely to suffer consequences because of the CoronaVirus.”
– “Can you describe the make-up of the people in your waiting room right now. (Second speaker- Doctor) We’re noticing more Black and brown and immigrant patients that are seeking care. A lot of these patients are essential workers. A lot of them are service workers.”

“The Real” Mobb Deep

TR:

Salutes to all of those men and women right now doing the work that will get us through this awful situation. I’m talking about the medical professionals, staff including technicians, receptionists, janitors, food workers and others. So many of these people have been doing this work for years and have been unseen even looked down upon. Now in the midst of a pandemic, it helps us see the value in their work.

Corona has revealed some truths about society that people have been trying to either hide or not think about.

We need each other!

We all have something to contribute.

Can I share a story?
(Well, I’m going to anyway, because it’s my podcast!)

My wife and I went to this party. this was post blindness. It wasn’t my first time attending a party Blind so I was familiar with the challenges:
Some are physical;
learning new spaces
dealing with the crowds in those space

Others are more emotional, philosophical;
Should I use my cane?
How can I meet or start and interaction with new people
Where’s the bar? (It’s a party, right!)

Although I knew the challenges, I had not yet figured out my method of dealing with them. By this time, I think I was intent on not letting avoidance be my answer.

There was nothing about the party that was overly memorable except how it felt like we were shown to a section of the space and sort of left there. We only knew a few people outside of the person who invited us. My wife and I both felt the tension.

I remember thinking about how the experience would have been so different before vision loss. Those who did know me would have called my name when we walked in, maybe we would have made eye contact during the evening, we would have been introduced to others. Instead, we didn’t feel welcomed. We were there, but not a part of that party.

Ultimately we came to the decision it was in our best interest to leave that physical space as it was crowding our emotional space.

Sitting there at the edge of this party, feeling as though we were on display, I wanted to be included. I wanted a role and not that of a bystander.

This pandemic triggered those same feelings. Chances are, it’s not just me.

Doing anything right now that doesn’t relate to Corona, just doesn’t feel right. I like other people want to be helpful. In some way.

Despite what seems like the world coming to a halt because of the virus, life is still happening. With or without this pandemic there are lots of people new to vision loss. Some of them are former nurses, doctors, EMS workers. Similar to how I felt at that party, these men and women I can imagine aren’t satisfied with being bystanders. Are there opportunities for these men and women to contribute if they so desire? Are there people with disabilities on the frontline.

This reminds me of the documentary produced by RMM Radio alumni Day Al-Mohamed, called Invalid Corps. It features the story of a virtually unrecognized troop of soldiers who served in the civil war. All were soldiers with disabilities.

Shout out to Day and let me encourage you to check out that episode.

Do I actually believe a Blind nurse or doctor can somehow be effective?

If you’re asking that question this must be your first time here! Welcome!

Am I proposing these newly Blind men and women are sent to the ER?

I’m not a doctor and I haven’t played one on TV. Even though I do have lots of experience watching medical dramas on television I don’t think I can make that determination. However, I don’t think the answer is a quick no like so many people would assume.

As people with disabilities We’re so used to being dismissed and hearing things like;
Well, it’s just not accessible…
It has to be done a certain way, we can’t just change how we do things.
Change can’t take place overnight.

Inaccessibility is somehow treated as if it’s natural.
The majority of inaccessibility is manmade. Physical access like getting into a building. Software constraints that keep many of us from either participating on the web or employment and then process restrictions that mandate how a job is performed.

And then, all of a sudden!

Audio: Gazoo (from The Flintstones)

Have you noticed all of the corporations now accommodating their employees with work from home access?
The online conferences and entertainment now available.
Everything getting done online.

If inaccessibility is manmade then maybe man can fix it,
Audio: “That’s right!” from Harry Belafonte’s “Man is Smart Woman is Smarter”

TR:

Huh!

Audio: “That’s right!” from Harry Belafonte’s “Man is Smart Woman is Smarter”

Audio: Bill Withers Lean on Me Instrumental

TR:

Right now, I guess my role in this pandemic is staying home. It’s continuing to do this podcast. In thinking about how I can do more, I sure don’t want to do less so I’ll try to do what I can. I’m going to remain optimistic and not get caught up in conspiracies, although they can be very entertaining.

Eventually, this too shall pass. I just hope we will move forward and be honest about how we got here. I’m talking about the impact of years of all the isms, racism, sexism, ableism…
the neglect, , the poverty, the gaps between the have and have nots.

None of these things are new. They’ve been here way before any of us were here. Corona just highlighted those on the margins, the party goers who have always been apart, never actually partying.

I know many people are calling for a return to normal, but that doesn’t seem like what we should be striving for.

I hope you don’t mind that I shared this with you. I just needed to put my two cents out in the world in my own way.

I have some non-Corona episodes in the lineup. I can’t promise I’ll be silent on this topic, but at least I’ll try to make it sound cool and make you smile along the way.

I hope when you listen to this podcast you feel a part of this community, my Reid My Mind Radio Family!

Last month’s episode titled Live Inspiration Porn – I Got Duped, attracted some new potential listeners to the web page over at ReidMyMind.com.

According to Google, a bunch of people in search of the term porn, were served the episode’s web page. I can only imagine the disappointment they had for google when they saw this particular episode in their results.

But wait, according to Google, several actually clicked on the page.

I don’t necessarily consider myself a good writer but I’m sort of proud of this one! I mean wow, shout out to me for what must have been a fantastically written blog post to redirect that person away from they’re original search.

I’d love to know if someone actually ended up listening to the episode based on that discovery term. And man if you actually came back… email me at ReidMyMindRadio at Gmail.com because that would be the best testimonial ever!

Don’t worry, no judgement here! Get your freak on!

If you like what you heard here today, tell a friend to check it out…

Let them know it’s available wherever they get their podcasts. Of course you can take a ride on the information super highway and get off on the ReidMyMind.com exit. 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!

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Adjusting to Vision Loss – A Creative Approach with Victoria Clare

Wednesday, February 19th, 2020

Victoria Clare with sculpture
Living a creative life for Victoria Clare is more than a way to express herself. It serves as a way to help her own adjustment to vision loss

Hear her story from denial and rebellion to acceptance and putting her in a position to support others.

Victoria Clare is a Sculptor, Musician, Entrepreneur… and she’s working on becoming a Scratch DJ! For real though!

Listen

Resources

Transcript

Show the transcript

TR:

What’s up Reid My Mind Radio Family? I missed you all for real!

Happy 2020 to you all!

A bit of a slow start, but you know, you can’t hold a brother back!

So much of what’s going on in the world today makes it more challenging to find that hope and optimism.
Audio: There’s no need to fear…”

Reid My Mind Radio is here!

Let’s get this poppin

Audio: Reid My Mind Theme Music

VC:
“Creativity is one of the most powerful, healing, it’s one of the most connective things that you could ever do to get to know who you really are.”

TR:
Getting to know who you really are is a big part of our early lives especially from our teenage years and on through college. For Victoria Clare, an artist specializing in sculpture, vision loss added to the process.

VC:

I just passed my driving test. I never had a lesson at night ever. Not any reason to that its was just my lessons were never booked for that time. When I passed my driving test I jumped in my car very elated wanted to go tell my boyfriend at the time that I passed my test.
Pulled out of my mom and Dad’s driveway and all of a sudden it became very very apparent to me that I really shouldn’t be driving. I just could not see enough to be driving.

TR:

On that ride to her boyfriend’s house, she clipped another vehicle and lost her driver’s side mirror. Fortunately, no one was hurt. It was enough to prompt her to see an Ophthalmologist

VC:

That’s when I found out I was going to go Blind.

TR:
The diagnosis was Retinitis Pigmentosa.

VC:
My particular Retinitis Pigmentosa is one of the recessive types so therefore we have no people in the family that have had it. So I’m literally the start of the chain if you will.
So finding that out as well kind of made me feel like wow what a responsibility. For me to get married and have children later in life would be a big choice for meat some point in my life which I was very aware of. However, I went back to college.

TR:

College in the UK refers to where many students go for two years after completing compulsory schooling at 16 in order to prepare for
exams to get into university. You can also take
vocational courses
at college.
While studying graphic design with plans to move on to University to continue in this field, Victoria just happened to come across a book about sculpture.

VC:

I knew when it was time for me to go to University that graphic design wasn’t for me. Sculpture was going to be my future
It was an amazing course. It only had 28 places in the whole of Europe. I was lucky enough to get one of those places.
I didn’t really consider that perhaps, hold on a second I may not be able to do this, I just carried on.

TR:

For some that may sound like optimism, positive thinking. But others who have been down this road would probably advise differently.

[TR in conversation with VC:]
Did you have contact with anyone else who was experiencing Vision Loss, anyone whose Blind?

VC:

No. No I had no contact with anyone like that.

TR:

Blind mentors can often help provide guidance, resources, and lend an understanding ear when dealing with all the additional loss that more than often accompanies the vision loss.

VC:

I had a lot of people kind of walk out of my life or just feel very awkward around me and didn’t know how to handle it.
My boyfriend I was with at the time, we got engaged, and he kind of was really struggling with the sight loss diagnosis and he actually saw it as too much for him so the relationship broke down.

[TR in conversation with VC:]

His loss! Hmm. We don’t like him.

VC:

Yeh!

TR:
Victoria soon learned that carrying on would require skills that she didn’t have. Living independently in a new town, navigating both in and outdoors.

VC:

I didn’t realize how simple everyday things would become so difficult for me. I had a hard time at Uny for a very short time, I mean literally I wasn’t there for very long before I decided that I can’t do this. It’s too hard. I left.

My lecturers said to me that I was welcome to come back at any time. Which was really really gracious of them considering it was such a prestigious course.

I had a conversation with my parents, they were incredibly supportive. They came and collected me.

TR:

Back at home Victoria says she isolated herself from the world.

VC:

And I started drinking. Initially it was about trying to numb the pain. I just felt like my whole world had shattered into a thousand pieces. I didn’t know how I was going to go forward. I didn’t see a future for myself .
And then something happened.

TR:

To put it simply, Victoria was introduced to possibility. It came in the form of a rehabilitation specialist.
A really lovely lady. She had a work cut out, to be really fair, with me. I was really super rebellious so I didn’t want help from anybody. You know, don’t treat me like a Blind person bla, bla, bla you know a typical kid.
TR:

Soon after meeting, the rehab specialist realized Victoria wasn’t going to use a white cane.

VC:

I just was not going to use one. I wanted to learn every trick in the trade so I could get away without using one.
She started to teach me other things like echo location, which is still really useful to me. trailing, just small things like that, that was getting me by.

TR:

Sometimes it’s the smallest suggestions that have the greatest results.
She was the one that suggested that maybe I should try some sculpture just for therapeutic reasons.
I went out in my Dad’s shed, I got a big old’ block of wood, stole some of his chisels, used his mallet and started creating. It was amazing. I turned my world around because it made me realize alright, I’ve been diagnosed with this sight loss but nobody’s taken away the skills that I’ve always had. They’re still there.

TR

Remember the skills that she began sharpening in University?

VC:

The background and the love was the figurative work so I created a kind of table top size maybe like two feet tall female figure. I called it “Her Spirit”. that was put into a local gallery and sold. I then kind of returned and created another figurative female figure which was also sold. My work has changed a lot over the years but most certainly it was more figurative work back then.
[TR in conversation with VC:]

Did it represent something in your life at that time or what was that all about?

VC:

I would say for me it was more to do with the fact that the course that I had to leave in Uny was a figurative sculpture course. So of course I was kind of making that connection of wanting to keep the figurative sculpture part of me going even though if I had to walk away from the University

[TR in conversation with VC:]

How much of an influence is blindness. The subject of blindness not necessarily your adaptations if there are some but how much does that play into sculpting specifically.

VC:

Now a huge part because I get inspired by it. For example only two years ago that I put on the first sculpture exhibition that was completely in a pitch black gallery. everybody had to use their other senses to discover what the pieces actually were.

TR:

This particular exhibition enabled Victoria to express herself in three different ways.

VC:

It was to share my personal acceptance of my journey with sight loss. It was to also kind of share sight loss with the general public so that they would have an experience and an understanding of what it feels like. And three it was a very strong message to visual arts because they really , really need to up their game when it comes to accessible art in galleries. Most certainly for visually impaired people . When you walk into a gallery how do we navigate and involve ourselves in our environment? By feeling. To be told that you can’t touch a piece of sculpture a piece of art you’re immediately excluded from enjoying it.

TR:

The exhibit, a first of its kind received national media coverage and all of the pieces were sold.
the result opened new opportunities for Victoria including serving as a retina UK Ambassador

VC:

Raising money to create research and pioneer research for Retinal Dystrophies. public speaking started to grow from there really. I get to speak at conferences and various events. I’m speaking at the World 2020 Vision, that’s in Dublin and also chairing a panel.

TR:

The latter is a chance to meet others impacted by vision loss.

VC:

There’s a connection there. It’s something very special.

TR:

A big part of her personal journey is creative expression. Something Victoria believes can be of help to others adjusting to their own vision loss.

VC:

I would recommend anything that will lift somebody’s mood that will connect them to who they are and make them feel that they are enough and give them self-confidence and self-worth. From sculpture to painting, from dance to music and anything in between. I would just say creativity is one of the most powerful, healing, it’s one of the most connective things that you could ever do to get to know who you really are.

TR:

Her own creative expression goes beyond sculpture.
There’s music which began around the same time as vision loss. Specifically, she began learning guitar from a friend.

VC:

Probably one of the things that helped me as I rewind going back to those dark days because I would sit when I was alone and if I was feeling down would just play my guitar. Just compose. I did find that a little comfort at the time.

TR:

About 13 years ago now, she discovered piano.

VC:

I used to be working in a school and this piano was sitting in the hall never being used and I’d be the only person working up a tinkle you know. Slowly but surely I started thinking you know what this is great, I love it and I ended up buying that piano off of the school and it’s sitting in my spare room now. (Laughs)

TR:

And you’re recording your music?

VC:

I Literally just come out of the studio.
Audio:
“Know you Matter”, Victoria Clare

TR:

Singing and performing in bands since she was 23 years old, “Know You Matter” is Victoria’s most recent production. It’s a message to all those that have self-doubt and serves as a personal affirmation to remind her that she matters. She hopes it will resonate with others.

Know You Matter is available on ITunes, Apple Music, Spotify and just about wherever you listen to music.

Next up creatively…

[TR in conversation with VC:]

And you’re rapping too?
Laughs!

VC:

Laughs! Working on it. I want to get into a bit of scratching, you know Tom. Laughs…

TR:

She’s serious! She’s a Hip Hop fan.

Dela 1

VC:

I like a lot of Hip Hop, Dance music, but then I like a lot of singer song writer stuff.

[TR in conversation with VC:]

Since you said Hip Hop, who did you like?

VC:

I absolutely love Dela Soul. Yeah they were definitely my favorite.

TR:
The more I think about her art, it makes sense. She takes an existing piece of wood and crafts that into a whole new thing. That’s Hip Hop.

This past Christmas Santa brought her a DJ controller or the modern day DJ turntables so who knows what she’ll create.

I know what you’re thinking, does this woman ever get bored? Well, she has the answer for boredom.

VC:

Board sports! (Laughs…)
[TR in conversation with VC:]

Yeh, I guess which is really another form of expression I would say.

VC:

When I was 23 a big life change happened for me because I decided to go backpacking with my best friends around the world. Probably the best thing I ever did. I was being faced with beautiful beaches and all the surf community and I was sitting there watching all these guys and girls just riding those waves and I just longed to do it but in my head the voice was saying you’ll never get to do that you’re going Blind you can’t do that.

TR:

If this were a movie, we’d queue up the dramatic music, the camera would pan out to the others easily riding the waves, maybe one falling off the board. The scene would move to Victoria slowly looking at a surf board next her and then back out toward the ocean. Seated on the san, she’d confidently straighten her back, stand, grab that board and sprint toward the water. Her friends would cheer her on as she paddled out to catch a wave…
But this ain’t no movie!
She privately held on to that desire like so many of us do.

VC:

It wasn’t until 2014 that I was actually doing my first solo exhibition. it was a really big14 piece collection exhibition. It was quite stressful at that time trying to do everything for it.
TR:

That’s when her husband had an idea.

VC:

Let me teach you how to surf . And that was it, I was hooked.

TR:

Once upon a time, she was adamant about not using the white cane. Today, Victoria puts that long white cane to good use.

VC:

Skateboarding!

TR:

that’s her way to expel that board energy when she can’t hit the waves.

And of course, where does Victoria go from here.

[TR in conversation with VC:]

You have a line of skateboards?

VC:

Yep, I’ve got the…

[TR in conversation with VC:]

Geez, you make me tired. (Laughs)
I got to up my life! I’m not doing enough.
(Laughs)

VC:

they’re called Blinded Soul and they’re bespoke solid deck skateboard.
When we started surfing we also taught my nephew to surf and then I took that one step further, I made him a surf board. I did the same for skateboards. I was just so amazed how smooth a ride they are. They’re built like in a retro style. They’re not built for tricks, but they’re definitely built for long distance really, cruising.

[TR in conversation with VC:]

The other day when I was reading your blog I was like man I think I want to do this. (Laughs…). Like, I want to try skateboarding Now it’s been years. I skateboarded as a kid.

Audio: from “It’s A thin Line between Love & Hate”
“Here I am laying in the hospital, bandaged from feet to head

TR:

Ok, all jokes aside, I’m going to give that a try.
My personal creativity and expression for a few years now has been less about sports and physical activity today compared to my past.

For anyone experiencing vision loss, finding a creative outlet is worth exploring. It’s hard because the reality is for most these endeavors just don’t help pay the rent.
But that’s not a reason to not pursue a passion or interest. there’s levels to this stuff. find your level and enjoy. The benefits are real.
Victoria’s pursuit of her own interest in music proved fruitful in ways she probably never expected.

[TR in conversation with VC:]

You mentioned your husband. Did your husband know about your vision loss initially?

VC:

Yes, yes. We met through a band that I was in. I was the singer he was the drummer. he had the same kind of silly sense of humor I guess that I’ve got. We’d just have good fun. He would drive me home after rehearsals and stuff. probably only took a couple of months for me to realize that a. how much I liked him and b, I had to tell him.
I sat in the car with him one night, we were just outside the flat where I was living at the time. And I had to take a very very deep breath and I told him. He just hugged me. And I said to him if this changes things you know it’s ok. And he was like no way. I just couldn’t imagine it changing anything between us.
He’s a very, very positive person. Very optimistic. He supports me in everything I do.

[TR in conversation with VC:]

And what’s this fine gentlemen’s name?

VC:

Ah, this fine gentlemen’s name is Adam.

TR:

you just never know where the pursuit of your interests may lead.
Victoria talks about all of her endeavors over at her blog Beyond Vision.

VC:

I want to reach as many people as I can. I want to support as many people as I can but along the way I want to share my vulnerability as much as my successes. I think it’s all very well to sit an talking about all the wonderful things that you get to do with your life but I think it’s more important to share also the vulnerable side of you too because it makes you more relatable. I really do get quite honest with my blogs. They really do tell a story within themselves. They’re raw, they’re authentic.

TR:
T
Encouraged to write her own story in the form of a book, first reluctant, Victoria eventually had an idea to help make the task more attainable.

VC:

What if I started thinking like the book is an extended blog?
So I got in touch with an editor, Molly Somerfield Smith, lovely lady she’s actually a ghost writer. When I first wrote to her I was kind of talking in a way that I wanted her to write it but she was the person that said to me you’ve got to write this yourself. This is your story this can’t come from me, this has got to come from you.
here I am a year later and she’s now got the version that I put together and she’s editing.

[TR in conversation with VC:]

First of all, I see that you’re doing audio blogs. So it’s not enough that you’re doing all the other stuff now you gotta come on into audio? Come on Victoria let some other people keep the audio… (laughs…)

VC:

You know what tom, it’s purely for selfish reasons.

TR:

For the record, I actually welcome and promote more of our voices in the space.
By now you probably can tell Victoria is all about productivity. She’s voice recording what she would have once written for the blog.

To check out her work and more…

VC:

I’ve got my professional website which is for the sculpture and that is www. VictoriaClareSculpture.com And then I got my advocacy website, VictoriaClare-BeyondVision.com. Where there’s all sorts of crazy stuff going on and it’s also got a lot of resources , support and that kind of stuff. And that’s where the blogs are as well.

TR:
Victoria’s working on moving her sculpture website to a more accessible platform.
You can also find her on Insta Gram at VictoriaClareSculpture. That’s Victoria Clare (spelled out)
Don’t forget to go on over to ITunes or wherever you get your music and get her latest single Know You Matter.

Audio: Break of Dawn, DeLa Soul

Shout out to Victoria Clare for sharing her journey. And shout out to Steph McCoy for making the connect!

I’m always hopeful that somehow this podcast finds those who are in the place where many of us once were.
That’s losing their sight, receiving a diagnosis they never expected, maybe fighting against the idea of using a white cane.

It’s easy to focus on what is being lost but as we heard today, the pursuit of those things that bring joy can really help you find what you’re seeking. It’s just right around the corner.

Audio: Lyrics… “Break of Dawn”

If you like what you heard today, subscribe wherever you get podcasts. Why not tell one or two people about what’s taking place here.
Let’s get this information into the ear holes of those who need it the most. In fact, you know we’re about that access here so it’s available for finger tips and eyes too in the form of transcripts available on ReidMyMind.com

That’s R to the E I D like my last name!

Audio: Reid My Mind Radio Outro

Peace!

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