Reid My Mind

TR:
Your listening to Reid My Mind Radio.
Chances are, you know that already because you pressed play!
Duh!
This is where we examine this art form that in its basic essence, is making visual content accessible to those of us who are blind or have low vision.
But in actuality it goes way beyond that.
Today, we look at the power of one.
I know it’s the loneliest number and all, but really that’s only when it chooses to stay by itself.
This experience directly led her to her second book of photographs titled, “I AM More Than My Hair”.
It tells the stories of women who are bald.
Yet, according to Alyscia, the most common cause is stress.
And that can occur earlier than we may expect.
As part of both a marketing and fundraising effort, Alyscia recorded footage of some of the women included in the book.
She applied to Docs in progress – a nonprofit organization that fosters a creative and supportive community for documentary filmmakers.
— Music begins, a slow jazzy piano Hip Hop groove
That required her to contact some of the women featured in the book and arrange to capture their stories on camera.
I am bald, My skin is Mocha. leaning towards chocolate, and about five, seven. I normally wear certain shades. And I love interesting earrings. And so I normally have those on as well. I’ve got on a black dress. It’s sleeveless.
Her first experience began with Bustin’ Loose,
A film starring Richard Pryor and Cicely Tyson.
The description Marguerite says was horrible.
— Richard Pryor saying…
so it kind of took a backseat for me for a while. But the thing that really got me with audio description was I like to go to plays and conferences and music shows and that kind of thing.
TR:
We didn’t get into that for the purposes of this particular discussion, but that to me sounds like a case of a lack of cultural competence.
— Music ends
What is more of a part of this discussion is her response.
When Alyscia was looking for women who were bald to participate in her book,
she put the word out and heard back from a friend who told her about Marguerite.
Marguerite wanted Alyscia to understand that while she herself is blind she doesn’t represent everyone.
I’m always encouraging people to go to places where there are lots of other people that may look like me, because we’re multifaceted. We’re not all the same, just like sighted people we’re not all the same we are of all manner of variables and we’re diverse and in so many things so don’t just think you really understand what’s going on with blind people cause you’ve met me.
About two months following that meeting, Alyscia premiered her documentary at a theater.
Marguerite was there.
She realized the impact of the visuals based on the audience response…
Check out the Reid My Mind Radio family connection y’all!
That documentarian was none other than 2019 Reid My Mind Radio alumni Day Al-Mohammed.
— Music Begins – an up tempo energetic, inspirational Hip Hop beat
That’s my good friend and another 2019 Reid My Mind Radio alumni,
Cheryl Green, Captioner and Audio Description Writer and Narrator extraordinaire.
It’ goes beyond Audio Description and captions in the documentary.
Alyscia created an accessible exhibit on display at Sandy Spring Museum in Maryland.
My hope for this was having the exhibit and also having a panel discussion with Cheryl and marguerite, Judy and three other women was that this will be an example of how museums and artists can incorporate accessibility in their work and into their venues.
One of the main challenges from the perspective of the museums and venues is often funding.
Unfortunately, we know that sometimes museums and other venues and businesses want to see a return on investment.
But it’s not as simple as build it and they will come.
this can’t be a onetime thing.
it’s like now that you know How could you not do anything about it because now you’re aware of it. It’s in your space.
Did you get any feedback from non-disabled people?
— Music ends.
I’m sorry y’all, but sometimes I really do just have to laugh.
Spending time and energy advocating for something can be challenging.
I was more interested in her getting a sense of, of blind people, and that we are asking for opportunities to be able to relate to our world, just like sighted people are, and that she as an artist and a creative person would do whatever she would do with it. And that would be good enough.
Marguerite: 26:36
Just interact ting on different levels, and asking people to recognize, I’m here in this space, and I want to participate.
And sometimes, because people don’t know, you got to be in there, in their mix to get your conversation in there.
Marguerite herself is an artist. She is quite thoughtful and makes some deep connections between the More than My Hair project and well,
life for example.
Marguerite: 30:51
People tend to want to treat you like you’re less then because you don’t have the same access to vision that other people had. But
As an African American?
Most of us realize that we’ve grown up in a country that has not been kind or fair to any of us. And even if we don’t have the words to speak about, it’s a heavy burden, to exist and grow in this society. And when you know that the majority of the power structure is literally walking around with disdain for us, because of the color of our skin. You can put on a happy face and move around. And that’s fine. But I think that it’s deeper than a happy face, I think that there are some natural laws of the universe, that are, are at work all the time. And it would be beneficial to get in touch with what they are, and try to work your life from there. Because if you go with the laws that this country is offering, it’s telling a story, and I’m just given a message that’s not healthy. And it’s not about wellbeing, especially for my community and for me.
Totally unrelated to that project, she’s also working on a new project in the horror genre and says she’s making sure to build in the space for Audio Description.
She’s continuing to give panel discussions on how to make art accessible based on her experience.
Whether you’re a consumer who can help someone learn about access,
a creator who can make your content inclusive or
you’re someone who can provide the funding,
we all play a part.
— “One” Sample from Public Enemy Number One, Public Enemy
— Music begins, an upbeat bright Hip Hop funk groove
The I’m More than My Hair, accessible exhibit will be on display through September 5, 2021. Unfortunately, Covid restrictions have probably been a factor in the lack of feedback from the Disabled community, but Alyscia is hopeful that the restrictions being lifted will help bring out more people.
She’s currently seeking distribution for I Am More Than My Hair the documentary,
which at some point will stream online.
This is just one example of what we know to be true.
When creators learn that their content is not accessible to an audience, chances are pretty high that they will want to do something about that.
Well at least the cool ones!
— Sample – “What the hell are you waiting for” from “Encore” by Jay Z
— Sample (“D! And that’s me in the place to be” Slick Rick)
— Reid My Mind Radio Outro

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TR:

Welcome to another episode of Reid My Mind Radio.
A podcast made for those adjusting to any degree of vision loss – meaning low vision to total blindness. You know this includes family and other loved ones too, right? It’s not just for the individual personally experiencing the loss.

My name is Thomas Reid, host and producer of what I’d like to think is your favorite podcast. Well, I have to believe that in order to achieve that, right?

Today we’re looking at vision loss through the lens of a mom who’s children were born Blind. Exactly what did she think when she received the diagnosis? What changed her perspective?

Audio: Reid My Mind Radio Intro

I am Kristin Smedley. Author of the new book Thriving Blind: Stories of Real people Succeeding Without Sight.

TR:

Kristin, spelled with two i’s is a mom of three.

KS:

Two of which are Blind due to a mutation in the CRB1 Gene causing leber’s Congenital amaurosis.

I started the work that I do because 19 years ago and 16 years ago professionals told me there was no hope for my sons.

[TR in conversation with KS:]
Isn’t that amazing though, they have the title of professional and they’re saying those types of things; no hope. I hear these stories so many times and in so many different ways and it always comes down to a lack of information on the side of the professionals.

KS:

In 2019 to still say there’s no hope; You know doctors are told to do no harm, it’s harmful to a family to tell them there’s no hope. They don’t know what to tell them. But it is lack of education and lack of information. That’s why platforms like yours are so incredibly important and I’m so grateful because getting the word out and getting the stories out in as many different ways and media as we can, really closes the gap on that information education issue.

TR:

Fortunately Kristin did gain access to that information, but it didn’t happen overnight.

KS:

All I knew about blindness was really nothing at all.

I knew of Stevie Wonder and Ray Charles as most of us do. When I was a kid growing up there was the show little house on the Prairie where the one sister went blind. I still remember the horrific episode. My family was just rocked watching that and that’s how we felt about blindness. And that still didn’t educate much about blindness. I had no information. I had no story or person to go to that they had the same thing and they were doing okay.

TR:

The fact that the entertainment industry really does have such a power to impact our perception is why representation matters.

I’m reminded of a quote:
“It ain’t where you’re from, it’s where you’re at.”

– It’s from one of the all-time greatest MC’s, Rakim.

Meaning, we all have a history but what are you doing right now, today.

The history?

prior to learning her first son Michael was blind, Kristin says she was living the perfect life. A large house, manicured lawn, SUV….

KS:

I had worked my whole life to achieve all my goals and they were all coming true.

[TR in conversation with KS:]
I know that you said you were an athlete.

KS:

Yeh!

[TR in conversation with KS:]
I look at specifically people who are athletes and I think they come to disability from a certain perspective and I wonder how you as an athlete kind of thought about disability. So when your son was blind did that make an impact from that perspective?

KS:

You know it’s so interesting and I so appreciate this conversation because nobody in all the interviews I’ve done nobody has asked me about this from an athlete’s perspective. And honestly I think that that was the biggest thing that was crushing for me because my whole life from the time I was maybe six years old had been athletics. I was on every field. I tried everything, it’s like it’s in my DNA. I still at almost 48 years old, three days a week I’m up at the park kicking a Soccer ball around. It just makes me happy and then I thought oh my God, he will never experience the incredibleness of team sports and what athletics can do for a person. That was the biggest crushing thing for me.

TR:
Audio: It ain’t where you’re from, It’s where you’re at!” from “I Know You Got Soul”, Eric B. & Rakim

Today, Kristin is in a much different place.

[TR in conversation with KS:]

You are scheduled to speak at the PCB Conference; Woo, woo! (Laughs…)

KS:
(Laughs) I’m excited!

TR:

And so is PCB.

Specifically, Kristin is a part of the SPARK Saturday lineup. This event is geared to teens, adults, & parents of Children with Blindness or Vision Loss!! It’s a means of helping anyone impacted by vision loss with finding self-confidence, peer support, , Resources, & Knowledge

I asked Kristin to summarize her message to the different audience groups.

First, other parents of Blind children. This includes both those like Kristin who’s children were born blind and those whose children lose their sight later.

KS:

Regardless of what the journey is, I know that it is hard to say okay let’s get all the tools and resources that they need. let’s let them figure out what it is that they’re hopes and dreams are going to be because a lot of the kids come crashing down to because their hopes and dreams they had for their lives have to change.

If you at least face it to the point that let’s get the tools that they need so that they can still manage at school and do well and have a level playing field. Then let’s take a look at okay how do we need to shift their dreams and the things that they want to work on

TR:

the circumstances are specific to parents and children but the idea of accessing the right tools and eventually re-evaluating goals is relevant to us all.

Also important, attitude.

KS:

If your child is seeing you in devastation then there’s a devastation they take on also, so you got to do everything you can even though it is so hard.

If you’re honest with the kids and you’re on the journey with them and you’re their number one fan and their number one advocate and you also realize that friends are going to turn away, and the friends come back, the really good ones come back, it’s all steps in the journey. But if you can stay with them, get them every single tool and resource they need and let go of some of those hopes and dreams for a while and then tweak them you’ll get there faster and a little easier.

TR:

Addressing that second audience group, adults including spouses adjusting to vision loss, Kristin gives an example from Thriving Blind: Stories of Real people Succeeding Without Sight, her new book and resource to help ease the journey of adjusting to vision loss.

KS:

I always say this, I can never put myself in their shoes because that didn’t happen to me. But I will turn them on to Chris Downey. He was an extremely successful architect, fully sighted. At 45 I believe he had something health wise happen. They nicked his optic nerve and woke up completely blind. He was like everybody gave up and said that his life was over but he had a 10 year old son. His son at that point tried to get on a travel baseball team and didn’t make it and he kept talking to him about that you got to pivot and work and get over it and all that when things change. He said how could I give my son all that advice all these years and now I’m just going to sit here and sulk. Within a month of waking up completely blind he was back to work as an architect and he’s more in demand now then he was as a sighted architect.

[TR in conversation with KS:]

What about a general audience who’s not that familiar with blindness but yet they are interested in experiences other than their own?

KS:

I talk about the 70 percent unemployment rate, only 30 percent of Blind kids are graduating High School and 14 percent of college. It actually has nothing to do with blindness. It’s the general public and access to resources that’s the problem.

The fact that major companies are having to go into law suits to make their web sites accessible for Blind people in this day and age is uncanny to me!

When you back up the problem is perception. Most people perceive blindness to be completely devastating and horrific and they don’t even want to consider it because it’s so awful. My whole Facebook is about all the goofy silly regular things that my kids do alongside the extraordinary things that they do.

The general public’s perception needs to shift. People still thrive if they have sight or not.

TR:

That’s a long way from the images she once saw on Little House on the Prairie. So how exactly did she get to this idea of Thriving Blind?

First, while pregnant with her second son Mitchell, she was still learning to accept that her 3 year old Michael was blind. On this one particular day she found herself, I guess you can say bargaining.

KS:

I said to God, Dude you’ve known me for all these years. You know that will break me. You and I both know that I don’t have it in me to do this twice so let’s just call it a deal right here. And this one’s going to be sighted and Michael will be fine.

TR:

In the movies, this is where something far out of the ordinary happens. But in real life the signs tend to be right in front of our face.

KS:

Then Michael bounced into my room like he did every day. Every day of his life he was bouncing and smiling and singing so it was no different that morning.

TR:

The difference, Kristin was in the right place to recognize the message Then, little 3 year old Michael said:

KS:

Isn’t this the best day ever!

The sun is up and I’m playing with all my toys and gosh I’m just so happy!

And then it was like a lightning bolt… I’m looking at him bounce right down the hallway and I thought this kid couldn’t care less about the challenges he’s facing. He didn’t see them as challenges. He figured out to that point everything he needed to do with a smile on his face at all times and that’s when I said alright you know if you’re going to do this to me twice then you’re going to have to send me every person, every resource because we both know I can’t do this alone. And from that moment on it was like weekly, daily I swear now it’s hourly by the minute a new person comes into my journey, a resource comes across my email. It is nonstop.

TR:

Meeting the people and learning of resources led Kristin to an understanding.

KS:

Who am I to sit on all that information and not turn around and share it because people were constantly calling me and messaging me saying how did you do it?

TR:

her answer to that question is the book Thriving Blind. One of her goals;

KS:

I want every specialist to hand that to a mom that was like me, nowhere to turn, never met a Blind person before had no idea of the possibility and put that in her hand. It’s the resource that I never had. The optimism that nobody could hand me; that’s what Thriving Blind is.

TR:

This shouldn’t be news to anyone but a change in attitude doesn’t fix everything. For example, while her children are all indeed thriving; Kristin says the feelings return.

But now she has a new way of handling them.

KS:

I sit in those feelings. What is it all about? And then realize it’s fear of the unknown.

I’m definitely not without moments of slipping into that pit again. I just have a way better system now to get me out of it.

TR:

An extremely honest and important reality for anyone in the midst of an adjustment to
understand.

KS:

I beat myself up a long time over those first three years of sitting and crying on my couch. I think you’re exactly right now that I think about it. Gosh, my heart is exploding because maybe the thing is I had to be so devastated that I had nowhere else to go and that’s why I had that moment of surrender the way I did.

[TR in conversation with KS:]

Again, always thinking about the person adjusting to vision loss, that’s what I’m doing, I remember my experience like you just said beating yourself up. I remember kind of beating myself up but it was like nah you are making progress but it was hard to see it. I guess I just always want people to know who are in that process that, nah, keep walking that journey because you’re going to get through. You got to keep moving forward in order to get through it.

TR:

A change in perception, a chance to meet others who have successfully walked a similar journey, access to resources; all ingredients to Thriving Blind.

Similarly, this is what you’ll get at SPARK Saturday where You’ll hear from Kristin Smedley herself along with Founder of Bold Blind Beauty and Co-Founder of Captivating Magazine, Stephanae McCoy, Dr. Andre Watson and yours truly kicking it off on October 19, 2019.

You can find links to this event on this episodes blog post at ReidMyMind.com. I’ll also link you to Kristin Smedley.com, , her TED Talk and of course Thriving Blind: Stories of Real people Succeeding Without Sight.

KS:

Paperback and Kindle versions available on Amazon with the audio version coming soon. And the electronic Braille format, the BRF file is available at KristinSmedley.com thanks to an incredible donation from the CEO of T-Mobile, it’s available at the same price of the Kindle version, $9.99. We’re working on the printed Braille version. That’s been an interesting journey, getting printed Braille in this country.

[TR in conversation with KS:]

Are you reading the audio book?

KS:

So the big surprise is that I’m reading it but my son Michael is doing all of the male interviews. He’s reading theirs.

# Close

TR:

Shout out to Kristin and her kids, Michael, Mitchell and her daughter Karissa.

KS:

Michael’s the oldest, but Mitchell would probably want me to point out that Mitchell’s taller than Michael.

[TR in conversation with KS:]

I love it when the youngest is taller than the oldest one. I’m a younger child.

KS:

Well I’m sure that my daughter would probably want me to point out that she’s the youngest but she’s the tallest.

[TR in conversation with KS:]
Oh, look at that. Okay, go head girl!

TR & KS laugh…

TR:

And if you haven’t yet, you should really go ahead and subscribe to this podcast wherever you like to listen. Apple, Spotify, Google or your favorite app.

You can always visit www.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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