Posts Tagged ‘Blind’

Climbing Accessible Heights with Matthew Shifrin

Wednesday, April 8th, 2020

Matthew Shifrin is a musician, Inventor, Entrepreneur and Advocate.

His story of bringing accessible instructions to Lego is a great example of the power of individual advocacy. Hear about his other projects including virtual reality, comic book access, rock climbing and a new podcast.

Listen

Resources

Transcript

Show the transcript

TR:

Greetings everyone, from at least 6 feet away!

First and foremost, I hope everyone is doing well, and you each are as comfortable as possible. Most importantly staying safe and keeping each other safe by following the recommended protocol.

for right now, I’m going to keep my Corona Virus thoughts and observations to simply wishing you all the best. And reminding you all to protect yourselves physically but also pay close attention to your mental health.

By the way, my name is Thomas Reid host and producer of this podcast where we bring you compelling people impacted by all degrees of blindness and disability. Occasionally, I share my own experiences as a man adjusting to becoming Blind as an adult. All of this by the way has been brought to you since 2014 from the safe and sanitized studio located in my home. So really, ain’t nothing new here folks! We’ve been riding ahead of this curve for a minute!
Now, only one way to start this episode…

Audio: Water flowing from sink…

TR sings…

“Wash your hands, Wash your hands, Everybody wash your hands.
Wash your hands, Wash your hands, Everybody wash your hands.”

Audio: Reid My Mind Theme Music

MS:
I’m Matthew Shifrin and I’m a Blind Musician and Inventor.

TR:

You may be familiar with Matthew. He’s received a fair amount of press in regards to his work with Lego. Specifically, his work making Lego instructions accessible to Blind children.

It all began when he himself as a five or six year old child followed a very specific instruction given to him by his close family friend.

MS:

Lilya who later created the text based instructions, she and I were driving back from somewhere , she stops the car and yells “Get out.” Ok, I get out. She says pick up this crate. This crate is like half my body weight. And so we manage to muscle this crate into the trunk of her car and she’s like, “C’mon open it.” I open it and this crate is full to the brim with Lego bricks.
And that’s really how my journey with Lego started.

TR:

Matthew began building Lego sets with the help of his parents.

MS:
Because they could read the instructions and I couldn’t.

TR:

Lego instructions are visual. They’re diagrams detailing how to connect the various pieces completing the design.

MS:

We were mainly building bionicals. , which were these action figures that Lego made. They were very formulaic. If I built one of them, then I could build the rest of a certain type on my own. Those were the only types of sets I could build on my own.

TR:

Building the sets required the help of Matthew’s parents.

MS:

So they’d just say okay you need to find such and such piece. I’d go scrounging around the bottom of the box to try and find something and then they’d say okay well here’s where you put it and I’d put it there and we’d go piece by piece. It would just take 4 to 5 hours to build a $20 set that was 200, 300 pieces.

TR:

While appreciative of his parent’s dedication and time, Matthew recognized the difference between his Lego experience and that of his friends.

MS:

They were building sets all the time. They’d come into school and say hey I built a spaceship yesterday and I’d say oh that’s so great. How did you do it? Then there’d be silence and they’d be like well, I looked at the instructions and they told me what to do and I just followed them. I just remember thinking all this time I wish I could do that.

TR:

In case you’re thinking Lego is just a toy.

MS:

When we look at Lego instructions they really provide a lot of insight into how things are made. How things are built. How mechanisms work.

And when I built on my own I really had none of that vocabulary.

TR:

This was evident from the experience his sighted friends had with Lego.

MS

they could build trains that ran, crossbows that shot actual darts because they were familiar with the engineering concepts that made these devices work.

TR:

Working with his parents gave Matthew[emphasis on some] some insight…

MS:

But as the Blind builder I was just following directions. I had no idea where we were going. yes, I knew it was some sort of frame that we were building but I had no idea what it would end up looking like. As opposed to the parents who did. There wasn’t a lot of vocabulary gained even then because I couldn’t see the instructions on my own I couldn’t flip ahead. I couldn’t imagine structures in my head because I had no vocabulary

TR:

Remember Lilya, the family friend who had Matthew lug that first box of Lego bricks into the car? On his 13th birthday, she brought him the next step in his access.

MS:

She gives me this big cardboard box with a big fat binder. And mind you this binder is thick, we’re talking two copies of the yellow Pages thick. In this binder there are these instructions that she’s hand Brailed on a Perkins Braille typewriter. And in the box is this Middle Eastern Lego Palace. This palace was big, 830 – 840 pieces. these instructions she created completely on her own. She invented her own vocabulary to name every type of Lego piece that was in that set.

TR:

That was the vocabulary Matthew longed for.

MS:

Put a flat 6 by 1vertically on the table. Put a flat 2 by 1 on its rear most button over hanging to the right horizontally. Put a flat 4 by 1 vertically to the front.

I got to a point where I was able to read instructions and imagine what it would be like to build a certain model or a certain sub section. That’s just spatial awareness, spatial reasoning, these sighted skills that are developed over many years in sighted children. The fact that I was able to really visualize on my own was a very valuable skill and I would argue an under taught skill when it comes to Blind children.

TR:

Getting access to Lego instructions was just a part of Lilya’s goal.

MS:

Her goal was that I should have the same experiences as other sighted children. And so she brailed board games, she brailed books. She did all of tshe did all of this stuff, but Lego was just the one thing g that she could not figure out how to make accessible for many many years just because the instructions were pictures.

TR:

Once Matthew gained access.

MS:

I just wanted people to have this resource because I’d benefited so much from it. Not all Blind kids have people that could write instructions for them. Everyone deserves to be able to build and to learn from what they’ve build.

TR:

making this information available to other Blind children required some steps.

MS:

We had to create more instructions, build more develop some sort of language. Make sure that this was durable and then we had to get it out to Blind people. I think Lego themselves were always an end goal but Blind people had to come first because we had to be sure that Blind people could engage in this content as much as I could.

TR:

Realizing the instructions could be produced digitally, eventually led to the website.

MS:

LegoForTheBlind.com where all our instructions live. there’s 30, 40 sets there.

Our end goal was always getting it to a larger entity.

[TR in conversation with MS:]

Would you consider yourself an advocate?

MS

Sure. Advocacy is like a blob, you can shape it mold it. One might argue that lilya making those instructions was advocacy. After she made those instructions and we had that website, I’d always wanted to get it through to Lego but I really didn’t know how to go about it. To infiltrate such a massive company you need to know people.

TR:

His first attempt, contacting Lego customer service didn’t yield any results. But sometimes, all you need is to know someone, who knows someone…
MS:

I was interning at the MIT Media Lab. I had a friend who worked there adn there’s a group there called the Lifelong learning Kindergarten Group and they have a very long and fruitful collaboration with Lego themselves. So I went to this friend of mine and said hey I have this project and I told him about the project and he said yeh, I have a friend who just moved to Denmark two weeks ago and he’s working with Lego. I’ll send your story along to him. We’ll see where that gets you. This friend of his emailed back and he said oh yes this is a very interesting story I’ll send it to the head of the new projects division which is like Lego’s version of DARPA, all their secret mysterious projects that no one really knows about until they get released. Then when I got in touch with this guy Olaf Gyllenstenthat was really a pivotal moment

because this guy was in on it. He wanted this to happen as much as I did.

TR:

That’s known as an internal ally. Someone in the organization to help advance your cause.

MS:

Mind you this guy had no connection with Blind people. He had just never thought about Blind children as a possible segment of people who could enjoy Lego and their instructional aspect just as much as sighted children. Just because he never met Blind children. When he realized this impact that this could make on Blind children, he bulldozed his way forward through the ranks of the company. He talked to the head of Lego Niels B. Christiansen who runs the company now and Christiansen was very enthusiastic and when your project goes that high up , it’s going to go somewhere.

TR:

And it did. Lego decided to produce the instructions.

MS:

The Lego Foundation, they’re kind of their charitable we have cool projects arm. They were showing off these instructions and they wrote me an email and said we have a press conference we want you to present. Could you come and we also want to introduce you to all of the people that have been doing this. Could you spend six days in Denmark. (Laughing…) I was like well, I guess I can. It was a conference of Lego fans. They are very committed. They have blogs and websites, YouTube channels. We’re showing the kind of text based instructions and comparing them to the graphical ones and just kind of talking about the thrill of being able to build on your own. Just the response form these people was amazing. They and I are just united by a love of Lego. It was amazing to see how touched these people were by these instructions and by the spreading of this medium to people who previously could not engaged with this medium as your average sighted person could. That was just a really energizing moment.

[TR in conversation with MS:]

Are you still working with the company?

MS

Very much. I do quality assurance. Checking instructions and making them as understandable as possible. We’re hoping to have 25 to 30 accessible instructions out in the next couple of months for sets that are currently out.

TR:

Users will be able to purchase a Lego set from their favorite retailer and download the instructions from the Lego website, LegoAudioInstructions.com.

MS:

Hopefully they’re also going to redesign their packaging so that they can Braille the numbered bags. I don’t know how long that’s going to take but that’s just something they’ve been looking into and hopefully that would happen.

[TR in conversation with MS:]
Wow!

TR:

I really shouldn’t have such a reaction in 2020. Unfortunately, the response from Lego, isn’t the norm. Even companies who make they’re product accessible, packaging, well that’s another story.

MS:

When Lilya and I were making these instructions on our own we really wanted Blind children to have the complete experience of building the set. So we would describe the box art and the advertising from the back of the manual and the art and the little prints on the Lego people because we really wanted the Blind child to engage with the set as much as the sighted child could. And it’s wonderful to see that carry over to Lego’s instructions. They describe the little Lego people and they describe this and that . They really tend to energize the experience. They really guide you through the building process and they complement you once you finish something they’re like congratulations you finished the car. An adult might kind of get annoyed by that but for children this is what they need when they’re fist getting into Lego. It’s really important for them to feel really included in the process and engaged by the process not just I’m stacking pieces but hey I built a thing. Now I can revel in this thing and then can move on to the next part of the build the fact that Lego are really making their instructions so human, I’m very glad that they’re doing that.

[TR in conversation with MS:]

It’s funny because you said adults can get annoyed… I don’t know, I guess because I’m coming from a particular perspective…

TR:

I wasn’t a Blind child. I don’t even recall having any Lego sets growing up.

When I became Blind as an adult, I had small sighted children, but man, I wish I had a Lego set with accessible instructions to actively engage in with my kids.

I did have a set of Braille Uno cards. That was one of the ways I practiced Braille. Unfortunately my daughter only three years old then would beat me constantly and it just wasn’t any fun! And for the record, I didn’t let her win. I’m not that type of parent. She was just a little card shark. I’m still not over that!

Matthew recently found a cool way to pair Lego bricks with a new interest.

MS:

A few months ago I started climbing with a team of disabled rock climbers. I saw that the Blind rock climbers were really struggling because there’s a person at the bottom of the climbing wall who yells directions at you. And that’s great because then you can get up to the top, but you have no opportunity to think ahead and really plan for yourself. As opposed to the sighted climber who’s able to come up to the wall look at it and really strategize as to where they put their various appendages. I thought well wouldn’t it be cool to make a Lego based mapping system for rock climbers.

TR:

Next time he went to the rock climbing gym, HE brought his Lego bricks and figured out a method for mapping the wall.

MS:

Different types of pieces are used for different types of holes. Two by ones are jugs which are large rounded holes and then one by ones are crimps which are smaller holes. Three by ones are legends and one by one flat round pieces are foot holes.

TR:

The map is laid out by working with that sighted person who yells directions.

MS:

They can do it in a matter of minutes. A minute or less. And so this could easily be used in climbing competitions.

[TR in conversation with MS:]
And then the person right before they’re climbing could actually kind of go through it . Now do you retain that information?

MS:

I try to retain but sometimes when someone yells out it’s also useful because you’re able to correct yourself on the fly and you’re able to kind of rethink your process if you’ve taken a slightly different path up than you initially estimated the yelling person is really valuable because they’re able to make you reassess your situation in a very sensible way.

[TR in conversation with MS:]

You’re younger than me man, I don’t retain as much anymore. Laughs…

Has this an impact on your view of advocacy? Do you have intentions on kind of moving forward and doing more of this type of thing?

MS

I have a comic book accessibility project where I’m building a virtual reality headset for Blind people with engineers at MIT. This headset makes you feel different motions by affecting your sense of balance and messing with it.

TR:

It sounds like the lessons learned with Lego are being applied to his latest project.

MS:

I thought about the way comics were made. I found that comic books run on scripts. These scripts are like movie scripts that they’re incredibly detailed and they tell the artist exactly what to draw and how to draw it. I thought this is our way in. What I need to do now is to network with authors and artists and comic book companies and really energize them. I’ve been in talks with Marvel Comics and combining this helmet that we’re working on with their comic books really provide a new dimension to their work via blind or sighted

The total strangers who owe you nothing but who are still incredibly enthusiastic. I go to comic book conventions every year to network with authors and kind of tell them about it engaging aspects of advocacy the project and Blind people and how comics help Blind people learn about the world around them.

These people are really energized by the fact that comics are being interpreted in a new way. I’m a random Blind guy with ideas. When I come up to their table and say I’d like to kind of look into how you write. Are any of your scripts available on your website? Could I figure out how to do this and make this accessible? They don’t owe me anything. They could say, sorry I only sign books goodbye. But no, they’re thrilled that comic books are going beyond the newsstand, beyond the bookshelf even beyond the television screen into new medium. The more success you have with advocacy the more energized you are to go out there and advocate more and make more things accessible to Blind people or disabled people or whoever.

TR:

Matthews latest project is looking at a different sort of access.

MS:

We have practically no Blind people in the mainstream podcasting space. And it’s interesting because podcasting seems to be such a Blind friendly medium, but when you look at places like I don’t know MPR, major broadcasters no one there is Blind. I started a podcast called Blind Guy Travels. First couple of episodes are hopefully going to come out in a month or two. It takes these mundane experiences like going to the movies or gestures or making funny faces from the standpoint of a Blind person. I’m doing it with Radiotopia who are kind of the podcast branch of NPR.

TR:

To me this story of making accessible Lego instructions is not only about the power of individual advocacy, the importance of stimulating a child’s imagination but also one of friendship and commitment.
MS:

When Lilya died she left a couple of instructions for sets that we hadn’t built yet. And it’s interesting now finishing those sets and building them and just kind of keeping the energy alive. Lego will do their own thing but hopefully Lego for the Blind will do its own thing just because Lego are going to start adapting from a certain year. Everything before then will be inaccessible. I have a list of sets that people want made accessible. The goal will be to find instruction writers. I can teach them easily how to do this and the goal will be to find instruction writes and to teach them to craft instructions and to keep the Lego For the Blind website growing and going beyond what Lilya and I have done.

TR:

How many times have we heard; a picture is worth a thousand words.

I don’t think we need a thousand words to describe the benefit of making the images that are the Lego instructions accessible.

MS:

I just remember building that set and feeling completely (exhale…) very free!
TR:

If you’re interested in helping this effort or just want to know more about any of the projects mentioned or more about Matthew including his music, contact him.

MS:

On Lego For the Blind there’s a contact uplink at the bottom and they could find me there. On Twitter @MatShhifrin Mat with one t. And on YouTube I’m Shifrin2002.

TR:

If you liked what you heard hear, all I ask is that you share the podcast. It’s safe, you don’t have to be within six feet of anyone to do so. Just send a text, email, a tweet a post on FB. Let them know you’re listening to something that you find enjoyable and informative.
It’s available wherever you get podcasts. And transcripts and more can be found at ReidMyMind.com. Just make sure you let them know, it’s R to the E I D (Audio: “D, and that’s me in the place to be” Slick Rick)

TR:
Like my last name!

Audio: Reid My Mind Outro

Peace!

Hide the transcript

Joe Strechay: When Preparation Meets Opportunity

Wednesday, December 4th, 2019
A picture of Joe Strechay with his cane in hand, standing in conversation on the set of See.

Image Courtesy of Apple

An RMM Radio O.G (Original Guest) is back! Joe Strechay, former Director of the Bureau Blindness & Visual Services of Pennsylvania and Blindness Consultant tells us all about his work on the new series See from Apple TV Plus. Yes, he found himself hanging out with See cast members like stars Jason Momoa and the legendary Alfre Woodard, but the job required some real sacrifices.

Jason Momoa as Baba Voss stares out past the camera. His eyes are white, face is scarred. See from Apple TV Plus

Image Courtesy of Apple

We dive in to see exactly how the events from his past lead him to being the right man for the job. Let’s just say he has a particular set of skills!

But his adjustment to blindness wasn’t all glitter.

Listen

Resources

Transcript

Show the transcript

TR:

What’s up Reid My Mind Radio Family!

Welcome bac to the podcast.

First time here? Cool. Allow me to introduce myself. I’m Thomas Reid host and producer of this podcast. This is the place to be if you want to hear from compelling people impacted by all degrees of blindness or disability in general. They all share one thing in common; their dope!

Not because they’re doing anything magical. No, their human. In fact, many of them have been where you may find yourself right now.

If you’re uncomfortable with those words, blind, disability, that’s ok for now. But take a listen to how comfortable my guests are with these words at their current place in their life journey.

Your journey will be different, but you’re definitely on one. And the R double M Radio family and I are here for you.

I think there’s only one way to bring on this one; lights, camera, action!

Audio: Reid My Mind Radio Intro

Scene from See…

TR:

This is a scene from the premiere episode of the new series called See available on Apple TV Plus.

Audio: Scene includes Audio Description Narration

TR:

yes, there’s audio description.

Here’s the synopsis from the opening scene

Audio Describer: Following the outbreak of a deadly virus in the 21st Century, the Earth’s human population was reduced to less than 2 million humans who survived all emerged Blind. Now centuries later the idea of vision exists only as a myth. To even speak of it is considered heresy.

TR:

Well RMM Radio you should be proud because in a six, well three, degrees of separation sort of way you are each connected to this new series. No, not because you yourself may be blind, but because one of our family members are let’s say, associated with the production of the show.

JS:

I’m Joe Strechay, I’m a Blindness Consultant for Apple TV Plus’s See, which is a streaming television show. And I’m also a Blindness Consultant out in the world outside of that working with organizations around blindness.

TR:

That’s right, our brother is back! He’s and O.G. in the R double M R Family.

Audio: Air horn

I couldn’t let 2019 end without discussing See and the role Joe played in its production. And even more in tune with this podcast is looking at his life path and how embracing his blindness helped his journey.

[TR in conversation with JS:]

Why don’t you catch up the family, because you’re part of the Reid My Mind Radio family big time!

JS:.

Definitely!

My favorite podcast around blindness! You heard that, favorite one!

Audio: Joe singing “Radio”

Last time you heard from me I was the Director of Blindness & Visual Services for the Commonwealth of Pennsylvania, overseeing the services for people who are Blind or Low Vision. I’d been working in the entertainment field part time over the last years.

TR:

That includes working with writers of the shows like Royal Pains, The OA on Netflix and of course Marvel’s Daredevil.

Audio: Clip from Daredevil episode.

While working as the Director of BBVS Joe was presented with an opportunity.

JS:

Apple TV Plus’s See Production in their infancy days reached out to me to see about working on the show. I had an interview first with the creator of the show Steven Knight and Jenno Topping who’s the president of Chernin Entertainment one of the studios involved. I think one of the Executive Producers involved was on the line as well. And then I had to do a Skype interview with Francis Lawrence who’s an Executive producer and the Director for episodes one through three. Once I cleared Francis I was able to land the position. We kind of talked about it and I talked to the production staff and it sounded like it was full time. And I’m like I’m going to have to leave my place of employment.

TR:/

His responsibilities first began with part time work. Consulting on scripts and exchanging ideas via a secured platform and conference calls in the evenings.

A day or two after his final day at the Bureau

JS:
I flew to British Columbia to officially start my full time job.

TR:

So what exactly does a Blindness Consultant do in the making of a series like See?
Audio: available on Apple TV Plus.

There’s the pre-production work like reviewing scripts and providing input…

JS:

We prep’ d for almost two months in person. We worked with a movement director like a choreographer type person and a team of choreographers.

I have lists of these little aspects of blindness that most people don’t know about. You’ll see more and more of that in the scripts I would say four through eight and maybe most people won’t notice them, but they’re in there.

Walking through some of the set pieces and saying oh, I think I would do this. Meeting with the set dressing department who puts out the objects that are set out in the space. Where I would put stuff, how I organize things.

Ideas for props. Even the weight of the props. How they might use that prop. Kind of help create the world with this amazing creative team.

TR:

A world, Joe points out is not of blindness.

JS:

It’s a Science fiction world probably somewhere between now and 100 or 200 years from now somewhere in there, a viral apocalypse happens. Kills off the majority of the population of earth. There are just a few million people left on earth and then those individuals emerge blind. Our show takes place centuries after that where civilizations have built out different environments.

It’s not a world of blindness, it’s a world of See really.

TR:

Definitely not a real world and therefore not a true depiction of how Blind people live. But representation matters. You know, sometimes you just have to take a stand!

JS:

There were definitely times. We did a lot of exploration around these people and making them different, each group different. Even differentiating the posture of people for their environment and like how they do things. There were times when I was yeh, I don’t think we’re gonna do that!.

TR:

Yet the science fiction format is known for exploring social and cultural issues.

JS

Our show battles with Ableism purposely at times.

TR:

Specifically, exploring, what happens when a set of twins are born with the ability to see in a world where everyone is blind

JS:

What people with vision might think versus people who are Blind. In a world where everyone else is Blind. Seeing that battle, seeing where people who are Blind are better at some things and people with vision are less than. I love that aspect. Everyone has different skills.

TR:

Multiple members of the cast are actually Blind or Low Vision. Again, representation matters.

JS:

One of the things I was really proud of in our background and some of our actors had other disabilities. We have background who are Deaf or Hard of hearing, a gentleman with Cerebral Palsy, all kinds of different disabilities. Our show embraces that. We want to make sure people have opportunities. These were talented interesting people that we could include in our show. There are people with other disabilities that you’ll never know that are within the show and even behind the scenes in production. It’s not because of their disability, it’s because they’re talented individuals.

TR:

As the majority of See’s characters are Blind, Joe is working closely with each. This includes the show’s lead, Jason Momoa.

Audio: Scene from see featuring Baba Voss played by Jason Momoa.

JS:

He’s super nice. He has a big heart and he brings so much consideration, energy, enthusiasm ideas. I’ve never met someone so creative. He sees things in the scenes. Most actors they see their role and their part in the scene, but he sees the whole scene at many times like where other actors are and what kind of story you can show with the angle. He’s directed.

TR:

Directed, co-wrote and starred in Road to Paloma a 2014 Drama thriller.

Also starring in the series is the 4 time Emmy Award Winning Alfre Woodard.

Audio: Scene from See featuring Paris, played by Alfre Woodard.

JS:

She taught me so much and continues to. Brings so much to our show and just as a person is an amazing friend as well.

That’s the thing I didn’t just make professional relationships it’s like so much bonding. We spent like six weeks at least in remote areas if not like 10.

TR:

That’s Joe with the cast of See

Audio: available on Apple TV Plus.

JS:

So Nesta Cooper, Archie (Madekwe), Mojean Aria, Hera Hilmar and all of them became my friends.

We spent time in an isolated area in British Columbia which is in Vancouver Island. There was a pub at our hotel and pretty much was the only place you could eat or drink! We’d have like an hour and forty five minute ride to set and back each day, so long days. You’d go to the pub and hangout.

[TR in conversation with JS:]

Now you’re there full time so you’re living there while you’re working. Were you the only Blind person there?

JS:

Yeh, at first I was the representative of Blindness originally, working through the setup of the show in person. I was there for 9 months originally and then another month for re-shoots. I became part of the Blindness community in Vancouver in British Columbia. The community really invited me in. I started going to audio described theater in the area. There was an international Goal Ball tournament I went to. I went to this organization’s Blind Beginnings events. Met with CNIB, the Canadian National Institute for the Blind and the Blind Sports Association of British Columbia and Canada. They were fantastic. Going to fundraisers for different groups and going to see the Blind Hockey team practice. They actually started becoming part of our background in our show.

TR:

Away from home for about 10 months, eventually Joe moved into an apartment after spending about three months in a hotel.

JS:

Right next door they had one of the best breakfast or lunch places . I met a couple of people out at this Ramen shop in the neighborhood who work there. I was eating Ramen and having a beer and we just started chatting. We became really good friends. Charlotte and Sebastian. My wife hung out with her too when we came in. I met so many people in the community. I was definitely in the community doing things. Going snow shoeing with friends.

[TR in conversation with JS:]

Laughing…

Ok, so I kind of want to move this to your career. And what you just talked about I think is probably an important aspect, especially from what I know about you. Networking, but really I don’t want to just call it networking because I feel like you’re a relationship guy. How important has that been in your career? Like that aspect of your personality.

JS:
You know throughout my career I moved up and down the East Coast to places where I didn’t know anyone at all.

I literally make an effort to go out places and sometimes it’s tiring you know, you worked all day, but that’s how you meet people. That’s how you become part of the community. That Ramen shop I went to a lot, I love that Ramen shop. they know me by name there(laughing). I also stick out, I have long hair, a beard and white cane so…

[TR in conversation with JS:]

Laughing…

JS:

But it has been important. I’m careful to ask people about what they do, their life, what they want to do. The same stuff we do in career counseling. That’s a great thing about blindness, I don’t judge a book by its cover. I just met someone and I talk to them . For the better or worse and typically for the better. Once in a while I get screamed at from some random person for no reason but you know everyone’s dealing with something.

TR:

Whether it’s moving to Florida for his Master’s degree or West Virginia where he ended up meeting his wife;

JS:

I meet people, I get to know them, maybe exchange information. If we click as friends or if I can help them I’m always willing to help people and connect people.

Yeh, I’m a relationship guy for sure!

TR:

Looking back, we can see signs of Joe’s interest and early preparation for a career in the entertainment industry.

JS:

I love television and movies. In high school I worked my four years at a video store, a VHS store.

TR:

For those too young to recall, A video store is like having a bunch of Netflix’s oh wait my bad, Apple TV Plus, in stores in every community. Rather than opening an app and making your selection, you’d have to leave your house and get to the store. You’d search the shelves for the movie that you wanted. If it’s there cool, take it to the front desk and pay to borrow that for a day. Now hurry home and watch it but don’t forget to bring it back the next day or you’ll have to pay additional fees.

Whew! Hooray for technology!

JS:

In college I never thought about working in film really, but I took a film and literature class. I enjoyed it.

TR:

His studies included the portrayal of minority characters as well as gender roles in film.

After receiving his Communications and Public Relations degree hhe went out into the world.
JS:

Worked in Public Relations right after school but I didn’t fall in love with the product side of it. I’m mission oriented I want to see things succeed.

TR:

Joe even came pretty close to landing the coveted job of a NBC Page.

JS:

I made it out of they said 10,000 or so. Six people on a panel interview with four people interviewing us. And it was like Valedictorian of Howard University, Valedictorian of another or a guy who worked on 20/20 already. Legally Blind since 19 and I had that opportunity to be part of that six.

I didn’t have all the skills I should have had to be successful at that point. I learned from it too.

TR:

Audio: I have a certain set of skills…Scene from “Taken”.

Joe’s particular set of skills include his Master’s degree in Orientation & Mobility.

But skills are only a part of what it takes.

JS:

When I had the opportunity to work with entertainment programs a little bit at American Foundation for the Blind and then more so with Netflix’s Marvel’s Daredevil which I did outside of my work at AFB. I had to complete all of my duties plus all my work so I was travelling all over the country, using New York City as my home base. There’s a lot of sacrifice.

TR:

Sacrifice is leaving a comfortable position and putting yourself out there for possible disappointment.

JS:

I’ve been offered other entertainment opportunities for movies. They want you to leave and be full time for like 2, 3 months at the most. To leave a full time position to go do that is a gamble. It was a big decision. My wife Jen and I discussed it and weighed the options. I sought advice from friends I worked with on other productions. When it came down to it, it just seemed like a unique opportunity. A game changer to impact the world but also they were committed to hiring actors that were Blind and Low Vision as well and wanted me to help with that. Making sure that there was accessibility and figuring out what that was. I never had that opportunity. I worked on other shows but it always just involved the portrayal of blindness, scripts some set advising and props s but this was a full time doing all that and so much more. We were figuring out what my role was as we went. It just kept expanding.

[TR in conversation with JS:]
How important was Apple? Was that a big factor in you making the decision to leave BBVS and go there?

JS:

It was a huge factor. When you throw the name Apple out in our community, the blindness community the disability community, it is like the gold standard.

Since 2009 and the third generation iPhone and even right before that with the Nano iPod where it had Voice Over embedded into it. It changed the game in accessibility. I have multiple Apple TV’s in my home, my Apple keyboard on the table here, Air Pods, iPhone 11 pro here and a iPod Touch over there so when Apple was connected to it I’m like this is going to be something!

TR:

When it comes to Joe’s real motivation, I think it’s pretty clear to see!

JS:

I’m very passionate about the portrayal of blindness in entertainment. I wrote an article about how disability is portrayed for AFB Access World years ago even before my time on Marvel’s Daredevil

Our show shows people as heroes, villains, good guys, bad guys, warriors, lovers. Things that you don’t typically see people who are Blind doing. Living their lives in a community cooking, building all kinds of things like that. That means something to me.

TR:

Did you catch that?

Audio: Rewinding Tape Deck

JS: “Things that you don’t see Blind people typically doing”

[TR in conversation with JS:]
Now you’re on set, working side by side with the Director? That’s pretty cool man! Explain that.

JS:

We had been talking and meeting a little bit. I gave him some ideas and suggestions. He wanted to make sure the world brought some reality of blindness as well and there’s interesting ideas that most people wouldn’t notice. And he’s like I want you next to me at every shot! It was unreal. I learned so much from all the directors, Francis, Lucas and Steven and Fred and Sally and all these amazing directors. They’re all so different and preparing in different ways and how they manage the set and each shot is different. So I learned a lot about how they setup things and their process and how to give input.

As the season goes on there were scenes that have no individuals who are Blind in it that I have input on that made it into the show. It wasn’t just the blindness that I was helping with.

[TR in conversation with JS:]
Are you interested in directing? (Laughs) You’re standing right next to the director man, like you’re already getting all this info.

JS:

You know I could see co-directing with someone.

[TR in conversation with JS:]
Now I know you have your YouTube channel so is this your preparation for being in front of the camera? (Laughs…)
Are we going to see you in See? (Laughs…)

JS:

I had a cameo or two . It hit the editing room floor – some of the scenes got cut. And it wasn’t because of my work. Who knows maybe in season 2.

TR:

Do you hear that optimism? That belief in anything is possible? Don’t get it twisted, that’s a process. Joe wasn’t always feeling that way. Like when he was 19 and diagnosed legally blind.

[TR in conversation with JS:]

If you could go back to some of that initial reaction. What would you tell yourself, your 19 year old self now?

JS:

When I first lost my vision I went through depression and I got counseling. They helped me guide through and understand that blindness and disability is not to end my life or anything. It changes and it changed how I viewed life. I would say embrace all of it.

It would be introducing myself to successful people who are Blind or Low Vision. Go someplace and learn how to use a white cane and learn the skills of independence as a person who is Blind.

People are always going to tell you what you can and can’t do as a person with a disability as a person who is Blind. They like to say no or you can’t do this. Don’t let them say no. During our show most of the things that you see people who are Blind do, I did as well. To figure out or feel. Climbing cliffs, hiking through different areas all kinds of different things that you see , I’ve done.

My buddy Dan Shotz, the show runner will tell you like early on people were like uh, I don’t think he should be doing that. I’m like, are the characters who are Blind doing this, then I’m going to do it. They embraced it. Dan pushed it and really allowed me to put myself out there and show them how we can do things. And if I didn’t have the expertise you know Erik Weihenmayer sent videos about climbing that I shared with Jason Momoa. I reached out to people such as T.Reid, Thomas Reid to share about their life and that was shared with all of our casts and production. Every couple of weeks I shared videos about people who were successful who were Blind or Low Vision from various types of work, backgrounds, life experiences.

[TR in conversation with JS:]
Hold on you’re telling me that Alfre Woodard saw that video?

JS:

Oh yeh, Alfre Woodard saw your video.

[TR in conversation with JS:]

Alfre Woodard saw me? Laughs…

JS:

It’s true, it’s true. Yup!

[TR in conversation with JS:]

Ahh, that’s cool!

Joe Stretch! Dude I told you that I think your story in terms of your hustle and what you’re doing is just so cool and inspiring to folks and to me personally. I definitely salute you, what you’re doing and keep doing it Bro. You’re doing your thing! I’m happy for you.

JS:

Thank you brother. You know how I feel about you and your podcast.

[TR in conversation with JS:]
Yes Sir… laughs…

JS:

Can I say it again?

[TR in conversation with JS:]
You can say it again!

JS:

My favorite podcast!

[TR in conversation with JS:]
Your what?

JS:

My favorite podcast around blindness is Reid My Mind… (Singing) Radio!

[TR in conversation with JS:]

Laughs…Yeh, there it is!

JS:

Woo!

TR:

See

Audio: available on Apple TV Plus.

was released with 3 episodes and subsequent episodes dropping weekly.

Creating See as a premier show for the launch of their network (Apple TV Plus) could be viewed as a risky move.

First, Apple has such a positive reputation with the Blind community. I’m sure they wouldn’t want to risk offending or having negative press like what we saw earlier this year when the CW launched “In the Dark” and the NFB responded with #LetUsPlayUs.

Yes, it’s Sci-Fi but blindness is real. Anyone who understands the power of media knows that it does impact how people view others.

but it appears they made every attempt to get it right.
Apple’s influence on accessibility goes beyond their own products.
When a clear leader of design and innovation makes such an open commitment to access, well it’s clear that others follow suit.

Leading off the launch of their streaming service, Apple TV Plus,
With a show built around a world where
blindness is the norm,
in an actual world where the thought of being blind is so feared.
I don’t know, that to me sounds like Apple once again being bold and let’s hope setting some trends.

This episode sort of made me want to look at whether I’m challenging my comfort level, putting myself out there enough, taking risks. As
people adjusting to blindness, disability I think we should be doing that.

It doesn’t have to be climbing mountains and what not. Those days are done for me. My back just hurts thinking about it. But there are definitely other ways. Who’s with me!

Joe’s experience is a great example of what’s possible.

I know there are some who hear Joe’s story and say he’s lucky. Well, I’ll agree with you. If you’re working with the same definition of luck. That’s when preparation meets opportunity. Because that’s when things happen.

[TR in conversation with JS:]
The coolest thing about watching the first episode was that right when it’s over and then ran the credits and I hear my man,
Audio: “Associate producer, Joe Strechay”, Audio Describer from See.

TR:
Dude I’m on the treadmill and I’m like yeh Joe, yeh! Laughs!

TR:

You can check out See (Available on Apple TV Plus) right now. Just open that TV app and you can get right on it. You can even get the first episode for free.

You can check out Joe on YouTube, his channel is called Joe Strechay. And he’s also on Twitter and Instagram under that same name.
That’s S T R E C H A Y!

TR:
I think this is a perfect way to officially close out the 2019 season.

I may drop an extra holiday episode, but you know there’s only one way to make sure you get that… Subscribe on Apple Podcasts, Spotify, Google Podcasts or where ever you like to get yours.

The podcast will be back in 2020 in time to help make things clear for anyone adjusting to blindness.

In the meantime please help spread the word. I hate to think of another young 19 year old who doesn’t get that help and have the same opportunities to reach their potential

Feel free to reach out and say hello. I love hearing from listeners.

We have the comments section on the blog, ReidMyMind.com.
The email; ReidMyMindRadio@gmail.com
The Reid My Mind Radio Feedback Line where you can leave a voice mail: 1 570-798-7343

I appreciate you listening and if you liked what you heard please rate and even review the show via Apple Podcast. And please, tell a friend to listen. Spread the love, man!

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

TR:

Peace!

Hide the transcript

Audimance: Transforming Dance and Movement into Sound

Wednesday, November 20th, 2019

Alice Sheppard is a former Professor turned Dancer, Choreographer and the Founding Director of Kinetic Light. A believer in access, she knew it required asking the right question. “Not how you make dance accessible, that’s boring. The question really is how do you transform the art of dance into the art of sound.”

fellow Dancer, Engineer and Kinetic Light partner, Laurel Lawson had the idea; Audimance!

A mobile phone screen sports several pastel colored dots'; the word “Audimance” is visible. The dots represent different soundtracks, and a brown skinned hand reaches into the image pressing on a dot and thereby choosing a mix of tracks.
Hear how they became Dancers, the challenges of finding physically integrated dance schools, the film “Inclinations” and all about the app that is changing the way we think of Audio description. Plus, do you recognize that voice?

Listen

Resources

Transcript

Show the transcript

TR:

Welcome back to the podcast featuring essays of compelling people
impacted by Blindness and Disability.
it’s called Reid My Mind Radio!

Every now and then, I include some of my personal experiences as a man adjusting to becoming Blind as an adult.

I’m Thomas Reid, producer and host of this here podcast
living up to the claim of making blindness sound funky!

I’m not only referring to the actual sound, but I’m talking about the energy.
It’s positive, yet real and always upbeat. Funky is my way of challenging how you the listener may
think a podcast geared to those adjusting to blindness is supposed to sound.
Should it sound sanitized, institutional? Not here it won’t.

So if you’re riding with the Reid My Mind Radio family well then you must be funky too!

On the podcast today…

Audio: “Dance”

Audio: Reid My Mind Radio Intro

“Once you start asking; how does your body move? How does it communicate movement? Movement is a rigorous and tough beautiful way of communicating. We owe it to ourselves and to our audiences to find, nurture and develop the greatest range of nuance in physical communication that we can. It’s an amazing kind of vocabulary.”, Alice Sheppard

TR:

Today we’re exploring some of that vocabulary with Dancer and Choreographer, Alice Sheppard. She’s also the founding Director of Kinetic Light;

AS:

Which is an ensemble of disabled artists making immersive dance experiences.

[TR in conversation with AS:]

Tell me a little bit about your first experience with dance.

AS:

I was a Musician, an Orchestral Pit Musician. Dancers were just simply the things above me on the stage pounding away, being late, needing the music to go slower, needing the music to go faster. (Laughs) I didn’t understand much about the art form . Dance was not something that my family had access to or I would have had access to even try. Dance just wasn’t there.

TR:

Eventually, She’d gain that access but the steps to becoming a dancer were far from choreographed.

[TR in conversation with AS:]

My understanding is that you became a professor… Yes?

AS:

Yes!

[TR in conversation with AS:]

(Laughing…) AS:

Laughing…

[TR in conversation with AS:] I just want to make sure the internet is correct.

AS:

the internet… in this case the internet is correct! Laughs…

TR:

A professor of Medieval Studies to be exact.

in 2004, Alice saw a performance by a disabled dancer.

AAS:

I didn’t really know what to expect. I was worried it was going to be cringe worthy and it wasn’t.

It was, … amazing! It was smart. It was political. It was sour. It was bitter. It was funny. It was tender, loving and joyful. It was the fullest expression of what you can hope for a body and mind and a heart. It grabbed me. It transported me and transformed me in ways I had not imagined possible.

TR:

Following the performance , Alice had a conversation with the dancer, Homer Avila.

AS:

We were talking about Disability and art and aesthetics and integrity and how you could work from a position of wholeness. He had an amputation to his leg, but he wasn’t saying things like he’s working from a deficit position, he was just working with the body that he had and reforming the art around his body. I was all into this because it was in line with what I was reading and thinking and writing about as a professor.

At the end of the evening he had issued a dare to me and a couple of other people who were hanging out

TR:

The dare?

Take a dance class.

AS:

I said yes because you know when you’re drinking you say yes to a whole pile of things.

[TR in conversation with AS:] Laughing…

AS:

Yeh, maybe this should be a lesson in bad alcohol. Don’t drink!

[TR in conversation with AS:]

Laughing… Maybe it’s good though because it seems like it worked out for you.

AS:

Yeh, yeh! (Laughing)

[TR in conversation with AS:] Not that I’m promoting alcohol. Laughs…

AS:

Laughs…

TR:

Sadly, that was Avila’s last performance. He passed away six weeks later.

AS:

I really felt like I had to honor that dare.

TR:

Finding a dance class doesn’t seem like it should be that hard, but it took Alice some time to find a school that would actually teach her. Instead she received responses like;

AS:

Well I don’t really know how to teach you or you can just be over there and maybe you can figure something out or make something up.

I never actually got to be in the dance class.

TR:

One school even had security post up outside of the class. We’re still trying to figure that one out!

I personally have never seen dance outside of that performed by someone with full use of their legs. So I asked Alice to describe how she does it.

AS:

Mostly in a manual wheelchair. Sometimes on crutches and some of my work is actually being done in a wheel chair with crutches on my arms as well.

[TR in conversation with AS:]

So tell me what does that look like?

AS:

If you can imagine a pair of manual crutches with rings like the European Lofstrand forearm crutches, they just have hoops at the top so you can hang them off your arms. I made them too short to stand up on, but long enough to be able to push my wheelchair like ski’s. Then I have these huge like 9 feet long, I can reach all the way up to the ceiling up to 11 1/2 feet and 9 feet wide. it’s just the incredible feeling of this huge wingspan and you can whirl those crutches. You can turn like nothing on earth, you just whirl them. Because they’re so wide they give you this incredible balance. It’s awesome! (Laughs…)

[TR in conversation with AS:]

Wow!

You’re going between the chair and the floor sometimes too, right?

AS:

Oh yeh! We use the floor in our chairs. We wear straps so the chairs come with us and we come with the chair. And then we can dive to the floor and roll and do all kinds of things on the floor. Sometimes we’re on the floor without our wheelchair.
It’s an amazing kind of vocabulary. I think once you start asking how does your body move. How does it communicate in movement? Movement is a rigorous and tough and beautiful way of communicating. We owe it to ourselves and to our audiences to find, nurture and develop the greatest range of nuance in physical communication that we can.

TR:

Eventually, Alice found her way to the Access Dance Company in Oakland California, where she took her first physically integrated dance class.

[TR in conversation with AS:] What was the experience like for you?

AS:

No one has ever quite asked me this before. Give me a moment to actually tell you the truth of it.

It was a sense of being at the beginning of something. Something I knew I couldn’t do. I knew I didn’t have control. I didn’t have the skill but it was being at the center feeling this whole area open up wide, wide, wide before me. And the joy and the pleasure of if I could be in there it would be amazing. I was aware that I sucked massively. I wasn’t doing the things that they asked, well. Even though I was doing them to the best of my capacity at the time. As a musician I recognized that I was at the same level of inquiry that I was at in the music practice. Where you’re like oh right I can see it, I can feel it, I don’t know what it’s going to be but I know that I have to work to get there.

TR:

Meanwhile, on the east side, in Georgia to be exact, Laurel Lawson was preparing to enter grad school.

LL:

I grew up playing music both as an amateur and as a professional and acting. I saw this dance class. It was in a great time slot right before I needed to be at one of my acting jobs. I thought it would be interesting, you know pick up a little broader skill base and it would be a good warm up. I’ve done a little bit of jazz like that minimum amount of theatrical dance that you need in order to get through musicals. So I went and signed up for this six week class. Boy I sucked so badly!

TR:

Well Douglas Scott apparently saw some talent there. He’s the founder and director of Full Radius Dance, a premier physically integrated dance school. He invited Laurel to audition for the dance company.

LL:

Two months later I was on stage in my first professional appearance.

It’s a little weird right. I often think about that. It’s like the most “bass awkward” way of falling into this field in some ways. A field that is so competitive that people work and dream and hustle from the time that they’re five years old and I took this weird circuitous path and almost wound up dancing by accident. Maybe that’s the title of my autobiography, “The Accidental Dancer”.

[TR in conversation with AS:]

Laughs…

TR:

The community of professional dancers isn’t that large. Eventually, Alice and Laurel met. First chatting about technique, exercises and shared experiences.

LL:

We always knew we had work to make together. It was just a matter of getting to the point for us as individuals, for us as artists where we were ready to do that. Where we could put together the kind of structure to support it and for the rest of the world to get to the point where we had this little bit of an entry to be able to get other people to realize hey we have something to contribute here. The funding and presentation landscape makes a huge difference in what gets presented and what does not.

TR:

That structure is Kinetic Light.

LL:

At the core of it, Kinetic Light consists of this collective of three artists, Alice, myself and Michael Maag who is our production, projection and lighting designer.

Kinetic Light is a little unusual in the way we operate compared to what you might call a conventional dance company. We’re a multi-disciplinary. In some ways we’re not necessarily a dance company. Dance is front and center but there are also ways in which we are a multi-modal performance company. Are we a tech company? That’s a question that we keep going back to because we’re not quite a dance company.

TR:

There’s multiple functions associated with running a dance company.
Of course, there’s the choreography, but we can’t forget the administrative work of funding, managing projects and more.

And then there’s something of particular interest to those with vision loss that Alice explains has always been a part of the plan.

AS:

My thought was always that we would do access. What I didn’t know was the kind of journey that it would become.

TR:

We’re talking about audio description. Well we’ll call it that for now. But the question is really how do you take a visual art experience like dance and make it available to those who are blind?

First, Alice invited friends to attend a live performance.

AS:

Georgina Kleege who is a Blind professor at UC Berkley. She’s a professor of Blind aesthetics and the arts and writing. She’s got this awesome book out right now called “What Blindness Contributes to Art”.

TR:

The goal was specific.

AS:

We want all of our people to come and have a good experience. How do we do it?

This was in 2016, but in 2012 I began exploring these types of threads anyway in my work. And then she picked up those threads and pushed them to the next level. And I was like ok, let’s do that.

Georgina and Josh Miele who, if you don’t know Josh you should talk to Josh, he’s an amazing technologist.

TR:

Shout out to Reid My Mind Radio Alumni Josh Miele. I’ll link you to his episode on this episode’s blog post.

AS:

Cool!

Georgina and Josh said yeh, ok, so you did better than the average and your definitely on some pathway but that isn’t it. It isn’t enough. We aren’t getting what everybody else is getting.

At that time what we were doing was making description of the physical movement.

LL:

That was really painful for us. this was our community that we had invited to come see us and we failed.
[
We hadn’t offered them an equitable experience.
]

TR:

Describing a dance performance isn’t a straight forward task.

Let’s take an example I feel almost everyone is familiar with.

Let’s say a dancer puts his left foot in.

Audio: Horn!

then puts his left foot out.

Audio: Two horn hits!

he does the Hokey Pokey and turns himself around.

Audio: Hokey Pokey song

Now that’s description!
It’s actually conveying all that’s taking place.
Well, if there’s only one person.

But let’s make that dance a bit more complicated.
say our dancer’s left foot is in while his right hand is up
and his partners right leg is up
and another dancer is flying across the screen with a particularly dramatic facial expression.
I’m not even getting into the lighting or stage props that often accompany the Hokey pokey!

AAS:

What you’re getting is this kind of displaced description. You’re not getting a sense of the art.

This is where Laurel comes in, she’s an engineer and designer and she thought of a way in which you could play multiple sound tracks on an app and a way for it to actually sync in time with the show. And so with this kind of technology at the basis the question became not how you make dance accessible, that’s boring. The question really is how do you transform the art of dance into the art of sound.

LL:

I had a little germ of an idea that would become Audimance.

TR:

Audimance was developed in association with Kinetic Light’s DESCENT.

AS:

Descent is a queer inter-racial love story between two disabled women.

Basically invents a backstory to the sculpture the Toilette of Venus and Andromeda by Rodan.

It figures out what does this goddess from Greek myth doing with this figure from Roman myth and why are they put together. Why does Rodan do that with them? It challenges Rodan’s own notions of feminism and lesbianism. It challenges the place of the incomplete body in Rodan’s thinking and sculpture. It’s an incredible kind of imagining of the relationship between the two. A love story maybe. It shows the ways in which disability and art go together. It re-imagines access ramps. It’s a thing this Descent!

TR:

With that in mind, let’s walk through how a nonvisual audience member experiences this performance using Audimance.

It starts with the pre-show. Here’s Alice.

AS:

The program is recorded. In the program there’s some background context to the work, and overall plot summary, a background on the set, an overarching narrative context if you want that. Rodan’s sculptures so there’s some information about that. Basically, information that is contextual.

TR:

That one aspect of Audimance is already surpassing how many of us experience description. Meaning, no longer are we confined to the strict time limitations dictated by the performance. Audience members may be able to access this pre-show information days before the event itself.

And then, if you arrive at the theater early, before the show…

AS:

One of the things we’ve been developing is a kind of tactile experience. This was something that josh was essential in thinking through. We 3D printed the set. The ramp and you could hold a model of the set in your hand and feel some of the things around that. There’s samples of the costumes, the surface, the flooring of the set, the kinds of material elements.

TR:

You may wonder, why a 3D rendering of the set if you’re physically there? the set of Descent is a ramp. And not just any ramp.

AS:

It’s 24 feet wide, 15 feet deep and it goes to 6 foot high at a kind of pointed mountainous peak that I sit on top of.

Each part of the ramp has its name. There’s the peak it’s a top of a mountain. At the bottom of the peak there are waves and there’s water, projections of waves water and rock. And then there’s this huge deck, this angled deck that is sometimes grass and sometimes a mountain range and sometimes an ocean. And the water waves whip up and down the ocean. It’s incredible!

TR:

You have all of the context information about the upcoming performance. And now, it’s ShowTime!

AS:

“How do you transform the art of dance into the art of sound.”

(Repeated from above but with an effect as if reflecting.)

TR:

That one question became several more that she proposed to her friends experiencing the performance non visually.

AS:

What are you listening to? What is communicative sound for you? How do you get art out of sound? What sounds mean something?

And then the question was what sounds are actually in the dance itself? Here’s where we ended up. We have to be able to convey the sounds of the work itself as a sound.

I rang Disabled Queer Trans gender Poet Eli Clare and I said, will you write poetry for this dance? Eli turned the dance into poetry. And I was like wow!

TR:

Audimance empowers the listener with choice and control. Pairing for example the poetry of Eli Clare with the original sound scape composition of Dylan Keefe from the sound rich podcast radio Lab.

Laurel tells us about other tracks and possibilities.

LL:

We can be working with people who are writing prose. For example maybe even describing it technically so that a nonvisual audience member whose also trained as a dancer is actually hearing in dance language about what we’re doing and understanding it in that medium. We can work with sonification of the stage or our bodies or interpreted sonification of the choreography itself. So for example you might be hearing a breath, a heartbeat a sound (slap, slap) as we contact each other as our chairs hit the stage

If you imagine you’re in a big room, a museum gallery, imagine that there are 20 speakers scattered throughout this room. They could be on the ceiling, floating in the middle of the air, on the walls or the floor and every speaker is playing a different track. But all the tracks are part of the same performance. As you wander through this space you can control what you’re listening to. You’re creating your own experience of this art. You can go cuddle up to a single speaker and listen to one track from beginning to end. find a mix, maybe between three or four speakers that appeals to you. Keep moving and keep listening to the way that the tracks and the performance shifts and changes as you’re constantly in motion between these speakers. Got that image. Ok, condense all of that down into a phone screen and you got Audimance!

Since I am sighted every bit of process all along the way we were going back and forth with non-visual audience members, collaborators, testers.

From the describer side I think we’re opening a lot of stuff up to. We’re trying to involve the describer as collaborator through this process. We’re not replacing audio description, we’re blowing it open.

TR:

With other options for Descent’s nonvisual audience members like an interpreted dramatic dialog, a description track specifically for those with kinesthetic imaginations or those who actually feel what’s being described, plus description of lighting… yeah, kaboom!

LL: on centering blind

Audimance is specifically designed for nonvisual users. It absolutely centers Blind users who have advanced listening skills.

TR:

You know you’re an advanced listener when you have the ability to audibly synthesize simultaneous streams of information. Probably more common is the ability to comprehend information at an increased rate. 25 percent, 50 maybe even double or triple its normal rate.

For example, a more seasoned screen reader user probably sounds like this…

Audio: Fast screen reader reading
“You know you’re you’re an advanced listener when you have the ability to audibly synthesize simultaneous streams of information. Probably more common is the ability to comprehend information at an increased rate. 25 percent, 50 maybe even double or triple its normal rate.”
TR:

Someone new to vision loss and therefore new to screen reader technology and synthetic speech and in general active listening sounds more like this…

Audio: Screen reader voice reading in a slow speed.
” You know you’re an advanced listener when you… Oh my goodness this is slow! I’m getting sleepy, sleepy”

LL:

obviously anyone who is hearing can use it but this isn’t a question of trying to make it work for everyone. It is made for and it centers this population that was being underserved artistically

TR:

With multiple choices, someone new to vision loss may be more comfortable simply choosing one or two tracks such as the poetry or traditional description.

Audimance allows users to make selections at any time since the tracks are synchronized to the live performance.

LL:
Are we providing an identical experience to a sighted audience member watching the dance? No Because that does not exist and saying that we’re making something identical is false equivalence. Do we think we’re creating something that is equitable in terms of a rich multi dimension complicated artistic experience? Something that has been crafted by the artist as part of the piece from the beginning?

Yeah! And that’s the feedback we have gotten about it.

TR:

Audimance is Open Source software that’s still in the early alpha phase of development. But there getting close to where anyone will be able to download the program.

LL:

Where venues will be able to download a creator interface and you can just go in a venue and have it pull up the experience for the show that you’re going to see.

TR:

That could be the more traditional description. But I’m hoping for a more artistic, thoughtful, equitable experience.

LL:

It was created for performance art, but certainly any theatrical performance, potentially even for music performances or for speakers to provide visual descriptions of the people on stage.

[TR in conversation with AS:]
That’s going to be fun to watch when people just kind of take that and say I want to play with it because they’re not even thinking about it from the perspective of inclusion or audio description. And it’s just I want to play with this and see what I can do.

LL:

I am so looking forward to that part of it because technically well when you think of it it doesn’t necessarily have to go with a performance. It can be an independent audio only artistic experience. Having people play with this kind of spatialized durational sonic art is going to be fascinating.

[TR in conversation with AS:]
And so that’s open source meaning anyone is going to be able to have access to that. There’s the equity component of that too. Or is this going to really cost people thousands of dollars? (Laughing…)

LL:

(Laughing)

Well you know the problem with that is if we make it cost thousands of dollars we’re going to have a real hard sell telling venues okay, there’s no excuse for your performance not to be accessible. Or dance companies, choreographers here, even if it’s just you describing your dance. You go into rehearsal and you just do the description if you have to. We’re not telling you you have to pay to bring an additional artist in for the week and house them and so forth.

TR:

Audimance is currently being supported by donations. That’s financial and labor.

LL:

If you are interested in contributing to this software itself as a programmer, as a designer, as a technical writer we need everybody right now. If you’re a project manager. If you’re interested in helping us write instructional content. We need tutorials and how to use it. We’re going to need tutorials to introduce presenters to it eventually. You can find the project on GitHub.

People can make financial donations on our website, KineticLight.org.

TR:

you can even earmark your donations specifically for the Audimance project.

Want to learn more about Audimance, Descent, Alice and Laurel?

AS:

There is a newsletter!

[TR in conversation with AS:]
Really and how would someone subscribe to that?

AS:

On your phone you can text 66866 to sign up.

[TR in conversation with AS:]
Wow, look how fancy you are? (Laughs…)

AS:

Laughs…

[TR in conversation with AS:]

(Playfully)
So you’re telling me, you don’t go to a website and put in all your information. All you have to do is text?

AS:

You can do that too. You can go to the website and put in your information.

[TR in conversation with AS:]

What website would that be?

AS:

(laughs…)
KineticLight.org

[TR in conversation with AS:]
What would folks get from the newsletter?

AS:

That’s a really good question. You would meet some of the team. You would learn about the performances or film screening. You might learn about an award. Sometimes we put in cool ideas about Disability culture. Sometimes we’re talking about work friends of ours are doing.

[TR in conversation with AS:]
Yeh, I like it! Cool!

TR:

I’ll tell you something else that’s pretty cool!
That film screening she mentioned? It’s a film featuring Alice and three other dancers . It takes place…

called Inclinations. it too highlights performance on a ramp. This one however is outdoors.

This particular film consists of audio description with two narrators.

Audio:

TR:

you should recognize that voice. That’s Cheryl Green, a podcast alumni and part of the Reid My Mind Radio family!

And the other describer…

Audio:

TR:

Yours truly!

Big shout out to Cheryl Green, Lisa Niedermeyer and everyone else involved in making that happen! That was fun!

Inclinations has been screened at Festivals in Canada and the US including;
National Dance Day at Kennedy Center
Superfest Disability Film Festival 
Cinema Touching Disability

For more on Inclinations checkout Alice Sheppard.com

Audio: “Check it out y’all!”

TR:

there’s a lot to be excited about Audimance. The feature that in my opinion means the most; It’s empowering.

It shifts the conversation from providing access to creating nonvisual experiences.

There’s so much possibility. Especially when you factor in that the technology is open source. It’s made for live performances but the same concepts can be applied to recorded performances.

We’re in a time where audio production is on the rise. I’m talking about the growth of podcasting. I think about the potential in the live podcasting space. Moving away from the Q&A format to a sound rich experience.

Forget about that idea that we need to wait for the kind help from others. Audimance is a collaborative effort from the cross disability community. If you’re not throwing your fist up in solidarity for that one, check your pulse!

Salute to Alice Laurel and everyone involved with the project!

And if you like what you heard?

Subscribe!
Apple Podcast, Spotify, Google Podcast, Stitcher, Tune In Radio or wherever you get podcasts.

You can always send me feedback or recommend a guest or topic all you have to do is hollaback!

We have the comments section on the blog, ReidMyMind.com.
The email; ReidMyMindRadio@gmail.com
The Reid My Mind Radio Feedback Line where you can leave a voice mail: 1 570-798-7343

I would really love voice messages that I can share on the podcast. If you don’t want to call, you can grab your smart phone and record a voice memo and email the finished recording to ReidMyMindRadio@gmail.com.

I’d love to hear and share the voices of those who are listening. If you want to send a message but don’t want it shared just say so and it’s all good.

I appreciate you listening and if you liked what you heard please rate and even review the show via Apple Podcast. And please, tell a friend to listen. Spread the love, man!

You can always visit www.ReidMyMind.com, that’s R to the E I D like my last name!

AS:

And I was like wow!

Audio: Reid My Mind Radio Outro

TR:

Peace!

Hide the transcript

The Making of Blind Leaders

Wednesday, October 23rd, 2019

Are leaders born or are they made?

The American Foundation for the Blind is seeking applicants who believe they have what it takes to learn how to become a leader.

Headshot of Megan Aragon
Megan Aragon is the Director of Knowledge Advancement Programs with AFB. Hear all about the Blind Leaders Development Program and how you can apply. Whether in the profit or nonprofit sector, leadership skills can help you reach your goals taking you to the next step in your career.

Megan’s own story of adjusting to vision loss exemplifies the ideas behind the Blind Leaders Development program. She provides some real insight on the adjustment process making this a must listen for anyone struggling to accept their own blindness.

Listen

Resources

Transcript

Show the transcript

TR:

Welcome back to another episode of Reid My Mind Radio.
I’m Thomas Reid, host & producer of the podcast bringing you
compelling people impacted by all degrees of vision loss. That means from Low Vision to totally Blind.

As we’re in the midst of NDEAM or
National Disability Employment Awareness Month,
I’m happy to bring you an episode with this in mind.

Audio: Reid My Mind radio Intro Theme Music

My name is Megan Aragon. I am the Director of Knowledge Advancement Programs with American Foundation for the Blind.

TR:

Before Megan began directing and advancing all of that knowledge
she had to find her own way.

At 17, while studying hard in college, Megan began experiencing eye fatigue. She initially blamed it on all of the studying but soon began seeing what she describes as lights.

MA:

Eventually those lights started to fill in to a blind spot. I’d be driving and pedestrians and street signs would just sort of pop into my peripheral vision and I didn’t realize what was going on it was just like they were appearing out of nowhere.

TR:

A few months later Megan was diagnosed with Stargardt’s Macular Dystrophy.

Even though she had a diagnosis, Megan admits she didn’t deal with the changes.

MA:

At some point you can’t just say I’m not going to deal with it. You have to deal with it.

I think it was probably over the course of four or five months I went from perfect vision to Low Vision.

[TR in conversation with MA:]
So you weren’t using any aids, large print magnifiers…

MA:
No, and I had no clue of what was out there in terms of tools resources, options nothing because I was being so stubborn and really acting in denial. I didn’t even do any research. I was just like nope I’m going to do it the way I used to do it and how I’ve always done it and then eventually I couldn’t.

TR:

Megan was creative in hiding her blindness.

MA:

Before I started college had worked as a waitress. So I knew that job and I knew how it might be done without vision.

TR:

Waitressing with low vision meant maximizing her memory of;
first, the menu, including ingredients for each dish

Then there’s taking each person’s order at the table.

Plus she memorized each screen on the computer order input system.

That was all after getting passed the in store application process.

MA:

I end up sneaking a magnifier in and was like reading a question and hiding the magnifier and filling in the answer and pulling out the magnifier out and was hiding my vision loss but was able to pass a personality/math test.

[TR in conversation with MA:]

I’m sure you probably thought about it, but what do you think was the reason that you were trying to hide it or trying to pass?

MA:

I hadn’t come to terms with it so I had no idea how to tell anybody about it without seeming super awkward and feeling weird. I just wanted to have a normal life. I could potentially lose my job. It would risk what I had built.

I think it could have been a really great opportunity for me to learn and for everyone else to learn, but I still just didn’t have those tools in my toolbox.

[TR in conversation with MA:]

Well eventually you did.

MA:

It was a long time after the waiting tables thing.

TR:

It was after graduating college with a degree in Sociology.

She had a plan to get some work experience and then return to school for a Master’s degree.

But she had to have a conversation with herself in order to get to the root of what was holding her back.

MA:

You need to understand your vision loss. You need to communicate about it and you need to know what tools you need in order to be successful.

TR:

What she didn’t know at the time was she needed an example.
Fortunately, her Dad knew someone who suggested their local Lighthouse for the Blind.

MA:

I look them up, it’s like a manufacturing facility. And I said, I don’t want to work at a manufacturing plant, that’s not the type of work I want to do. I don’t know where to turn to . I ended up sending my resume over and interviewing with their Vice-President of Operations. He has a visual impairment. I think we spent two or three hours during that interview .

This guy has a vision impairment adjust like I do and he has his act together. He has a big job, he’s got it going on and he has vision loss just like I do, huh! Maybe I could have it going on. So finally the lights came on.

[TR in conversation with MA:]
So the lights came on at the Lighthouse!

TR& MA laugh…

MA:

I remember I got the call that they were going to give me a job and I was in the kitchen and got off the phone and started dancing around like oh my gosh it’s possible , like I could totally do this!

In my mind I hadn’t proved it to myself yet that I could be a good employee. That I had value to bring to the table. You know that (exhales) that I could do something more than waiting tables.

TR:

No shots at all to those waitressing,
Megan just needed to know she could be successful at something else.

That seems pretty obvious to those who see the ingenuity and persistence that went into first landing the waitress job, but Megan had to realize her own value.

Once denying her vision loss, now the Director of Knowledge Advancement Programs at American Foundation for the Blind.

MA:

Knowledge Advancement programs are focused on employment and developing ways to change the system that individuals go through that effects employments. Hiring practices of employers. general inclusion practices of employers. Policies and practices that affect employment of the blind and visually impaired individual. Helping to develop blind and visually impaired individuals so they’re ready to step into roles of leadership and employment.

TR:

Part of that last initiative is the Blind Leaders Development Program

MA:

This will be our kick-off year. Essentially, the Blind Leaders development program will take a group of 12 to 16 Blind and Visually Impaired individuals through a leadership development program for 12 months. The curriculum we’re using for this program is called the Leadership Challenge.

TR:

Based on 30 years of research, the heart of this curriculum is
the idea that leaders aren’t born. leadership can be taught.

MA:

There are 30 specific behaviors that are observable if someone demonstrates those behaviors then they’re more likely to be willingly followed by others. The theory is there are things you can do to be a better leader.

It’s a kick start. It’s meant to amplify someone’s career trajectory. We’re hoping to develop leadership capacity within individuals and see them achieve upward mobility.

[TR in conversation with MA:]

Give me an example of someone who would be right for this program. Jane Doe works, you fill in the blank, she does bla bla bla!

MA:

Sure, so Jane Doe could be working at a nonprofit agency, in the for profit sector, government sector. Is interested in developing her ability to be a better leader, engaging with her organization.

[TR in conversation with MA:]

What type of work would Jane Doe be doing. Does it matter? Could she be an Admin? Does she have to be already on the management track?

MA:

Yeah, she could be doing anything. Doesn’t have to be on the management track, but interested in doing something like that. Interested in achieving hire level of career and leadership responsibility.

TR:

Sounds like you or someone you know?

Here’s a bit more of what AFB is seeking from a candidate.

MA:

Someone that is going to take the learning the knowledge and the concepts that we discuss during the program and take that home and apply them and really engage.

TR:

Apply them at work and in community organizations by serving on committees, boards.

MA:

Someone that is willing to consider a variety of opinions and perspectives and is able to integrate those into new ways of thinking. Creative open mind set.

We also want to see someone that has the potential to be a productive participant. They are willing to make the commitments that are required to really get a lot out of this program.

TR:

Here’s how it will work.

All interested candidates will have to complete an application available online at AFB.org.

The yearlong program will kick-off with a two day leadership workshop just prior to the AFB Leadership Conference in March 2020.

MA:

Where they’ll dive really deeply into the leadership challenge text, the results of their leadership practices inventory which is a survey that measures the frequency of those 30 behaviors I mentioned before.

How often does a participant for example, follow through on commitments they make.
TR:

Such behaviors are said to be an indication of leadership ability.

In addition to setting their own goals for the program,
participants will rate their own abilities and the results will be compared
to answers provided by their peers and managers.

MA:

It’s both eye opening and affirming.

The rest of the year will be done virtually. Every other month there will be a webinar where we talk about soft skill development, interpersonal skills and those key skills that are so important for leadership development.

Communication, networking, things that a lot of times require the ability to read nonverbal cues. So how do you do that as a Blind individual. Techniques you can use to make sure you’re as effective or better as your sighted peers.

We’re also incorporating a professional coaching element to the program and a mentoring element to the program.

There will be 12 to 16 Blind and Visually Impaired established leaders that will participate in the program as well and help to mentor those participants.

TR:

On the off months where there is no webinar scheduled,
participants will meet individually with their coach and mentor.

Mentors will also need to complete an application.

Those selected will be paired with a mentee prior to them meeting
for the first time during the leadership workshop preceding the AFB Leadership Conference in March of 2020.

MA:

Pair based on interest, and goals, experiences. So that what the participant is hoping to achieve down the line will match with what’s going on with the mentors so that there’s alignment.

TR:

Megan’s own story of coming to terms with her vision loss exemplifies
the importance of mentors.

MA:

mentoring is such a powerful thing. It gives you a different perspective, a different way to look at your situation and say okay, I can approach this in another way. It also gives you hope, like I’m struggling with whatever my issue is right now but look at this other person whose either gone through something similar or has been there and done that.

TR:

Megan clearly understands the benefits and continues to have mentors in her life.

MA:

Two of which are not visually impaired individuals but all three are women. That’s been the main connecting piece there for me. Women that are successful and really wonderful role models.

[TR in conversation with MA:]
In a way you brought up diversity so I’m going to ask you in terms of the BLDP is there a plan in place? Is there consideration to make sure that the choices made are a diverse group?

MA:

Yeah absolutely! We’re collecting information from our applicants about their diversity and will take that into account as we select participants to make sure we have as diverse a group as possible. As representative a group as possible. And in the application all of this is explained. How we’ll keep all of the applicant’s information private and make sure that the selection process is as unbiased as possible. That is absolutely a commitment that AFB has made. The more perspectives we can bring to the table the better everyone will be. Especially if we’re very intentional about how we leverage that diversity and how we leverage the different perspectives. And this is one reason why that’s a criteria that we’re looking for – open mindness, the willingness to learn, the willingness to consider other perspectives because of how powerful that can be in the learning process.

TR:

Now, I know what you’re thinking.
As I mentioned in the beginning of this episode,
it’s National Disability Employment Awareness Month.

What about those struggling to gain employment?

Well, AFB is in the early phase of creating
pathways to competitive integrated employment.

MA:

The first phase is research and studies. The second phase will be testing our theories about how we can create those pathways and the kinds of jobs that we’re talking about. What we’re committing to is developing knowledge based work for Blind and Visually Impaired individuals. So this is probably using a computer. Probably requires a Bachelor’s Degree or some sort of specialized training and knowledge and would be work that requires creative thinking and problem solving. That’s where we’re hoping we can really move the needle as far as folks that don’t have a job who are interested in working in the knowledge based field.

TR:

I know there are real candidates right here in the Reid My Mind Radio Family both for Mentors and Mentees.

The application process closes on November 1, 2019.

Applicants will be notified of the results in mid-November.

Please let me encourage you to head on over to AFB.org and
look for that button that says Join the program or become a Mentor.

If you have additional questions about the program you can email Megan

MA:

M as in Megan.
Aragon (Spelled out)at AFB.org
MAragon@AFB.org

TR:

A big shout out to Megan Aragon.

There are a lot of people right now going through their own version of her story.

Trying to run away from the loss and convince themselves nothing has changed.

Hopefully those going through this can see Megan’s courage not only in
adjusting her perspective of vision loss but also in the way she shared it today.

She’s come a long way from hiding her magnifier.

And now that she’s no longer memorizing menus and order entry screens
but rather using access technology, she’s free to
keep on directing all of that knowledge over at AFB.

And hopefully come back on the podcast to discuss the inaugural year of the program.

I know this is the end of October and
National Disability Employment Awareness Month, but
we’re going to keep the conversation going into November.

There are many specific factors for those with disabilities to consider when seeking employment.

We have past episodes that deal with this subject specifically.

But so much of the employment process is universal.

Next time, I’m speaking with a Career Coach to hear more about how
that process has changed.

it’s no longer a passive process –
there’s methods that can really put the job seeker in control.

There’s only one way to make sure you don’t miss that…

Subscribe or follow the podcast where ever you listen;

Apple, Spotify, Google or your favorite podcast app.

I appreciate you listening and if you liked what you heard please rate and even review the show via Apple Podcast. And please, tell a friend to listen. Spread the love, man!

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!

Hide the transcript

Because We Are Captivating

Wednesday, October 9th, 2019

A professional headshot of Stephanae's smashing asymmetrical hairstyle with burgundy highlights. The muted Coral Cutie lipstick topped with a peach colored gloss provides a nice contrast against the gray backdrop. She is wearing a black dress and black tuxedo jacket trimmed in faux leather, silver statement necklace, and silver drop earrings.
Third time on the podcast, Stephanae McCoy is the co-founder of Captivating, an online magazine. Hear her journey from once believeing there was no future to empowering women with vision loss to see their Bold, Blind Beauty Captivating selves!
How did she start the magazine? What helped her find her purpose? And what’s her advice for others adjusting to vision loss? Plus Steph is a part of SPARK Saturday. #SparkSaturdayPCB)

Listen

Resources

Transcript

Show the transcript

Hide the transcript

TR:

Welcome back to Reid My Mind Radio!

With each episode, I’m hopeful that we’re reaching someone new to vision loss. I know they are out there and I have a pretty good idea of what they’re experieencing. Mainly because I myself became Blind as an adult.

My name is Thomas Reid and I am host and producer of this hear podcast – which is all about sharing the stories of compelling people who themselves have some degree of blindness. From low vision to totally blind, like me!

In sharing our stories we begin to shatter the false beliefs and information about what it means to live with low vision, blindness or disability. Beliefs we may have never even realized we held. Notice I said we? Meaning you and I both. No one is immune.

For those interested in a different way of thinking,let’s go!

Audio: Reid My Mind Radio Intro

[TR in conversation with SM:]

Yeah so you know how this works, this is your third time! (Laughs) Trifecta!

SM:

Laughing

My name is Stephanae McCoy and I am the founder of Bold Blind Beauty and online community with the purpose of empowering Blind and Visually Impaired women while connecting sighted and non sighted people. And I’m also the Co-Founder of Captivating.

TR:

That’s right, Steph is back on the podcast. I encourage you to check out her first and second episodes which I’ll link to from this episodes blog post over at ReidMyMind.com.

Today, let’s start with her most recent venture.

SM:

Captivating!

TR:

An online digital lifestyle magazine gearred to people with disabilities.

After witnessing the results of a friend and fellow Blind blogger’s make over, Steph reached out to the image consultant who performed the transformation.

SM:

Her name is Chelsea Nguyen. our first telephone conversation actually lasted three hours, the first time I met her. And we were just going on and on about the things we had in common.

TR:

But there are also differences.

SM:

Chelsea is not Blind. Chelsea does not have a disability, but Chelsea has a heart for people who do. And she specifically has a heart for people who are Blind and Visually Impaired. Being that she has had that experience working with Blind people she developed strategies to help Blind and visually Impaired people use non-visual techniques for applying makeup, taking care of their appearance and everything. She developped these things. I’m like we really gotta do something together.

TR:

Eventually the ideas turned into Captivating.

SM:

We were thinking about how people with disabilities are viewed broadly, especially if you have a visible disability. People stare at us a lot when we’re out here living our lives when we have a white cane or wheelchair or whatever.

TR:

Maybe that’s the gaze of seeing something unfamiliar, possibly fear or even ableism.

Whatever it is, Steph’s flipping it!

SM:

We think that when people are looking at us when we’re out here with our devices, that they’re looking at us because we are captivating.

TR:

That’s not her initial reaction to her vision loss in 2005. This attitude has it’s beginnings in 2009.

SM:

That’s when I was diagnosed legally Blind and had to look at some adaptations for work and life.

[TR in conversation with SM:]

Let’s say we’re back in 2009. Ok, so I remember how I felt in terms of my career and my future. Do you remember that time for you?

SM:

Oh my God yeah!

I had these plans. I had just gotten married like a year or so before. We had bought a house. I had just gotten a promotion at work and I just had all of these grand plans and it’s like now I’m legally Blind and now what

[TR in conversation with SM:]

Hmm.

SM:

You know?

[TR in conversation with SM:]
Yeah!

SM:

Before I connected with other organizations and other Blind people I just sort of thought that I had no future. I thought it was over.

TR:

TR:

That’s despair. An unforgettable emotion. She didn’t know it at the time, but she did have a way to take her from no future to Bold Blind Beauty to straight up Captivating?

SM:

even in the worst set of circumstances I would always think, there is always a way.

I didn’t know what that was going to look like but I knew there was going to be away that I could progress through this and I could adapt to it and grow with it. I didn’t think so at the time.

TR:

In the midst of pain, its hard to see how it can provide opportunity.

SM:

It wasn’t until I think I lost my sight and had to advocate on behalf of myself that it became clear to me what my real purpose was.

TR:

Steph’s earliest advocacy was as a mom.

SM:

My middle son had ADHD, Attention Deficit Hyperactivity Disorder. When he was going to school because his behavior was so over the top, it was just very, very challenging trying to manage him especially being a single parent with two other children. I had to become my sons advocate. I didn’t even consider myself an advocate before he got diagnosed.

TR:

All set to discuss her son’s Individual Education Planwith a teacher and principal, Steph quickly realized she was unprepared when the attendees included several faculty and specialists.

SM:

That never happened again because after that I educated myself and I found out everything I need to know to be able to help my son and to be his advocate. Every time they would try to do something that I felt wasn’t Kosher, we would have to sit down and have a conversation. It was almost like a full time job.

TR:

Then there was advocacy from her perspective as a daughter.

SM:

My mother developed a disability in her later years. Her entire body was pulled to the left side so her head was almost touching the floor because of her Dystonia. She had reached a point where she was denied Social Security Disability three times. When you’re applying for Disability it’s a difficult process, but its made even more difficult once you’re denied the third time.

TR:

First step!

SM:

I got really angry, but on my way home I thought about it, I gotta sit back, think this through, do some research and then I started writing.

TR:

Writing a letter detailing her mothers situation including pictures and an invitation to visit. Addressed to the Social Security Administration.

SM:

I CC’d all of my representatives, her doctor and her attorney. Arland Spector’s office got involved and within six weeks my mother was getting the benefits that she rightly deserved.

TR:

The strength to move through challenges can come from all of our individual experiences.