Archive for the ‘Goals’ Category

Walking the Walk with Day Al-Mohamed

Wednesday, May 8th, 2019

Day Al-Mohamed and guide dog Gamma
Today is the right day to shine the spotlight on Day Al-mohamed. We’re focusing on her creative endeavors such as writing books, short stories, comic books and scripts. now she adds Film director and Producer to her list of credits. Hear how she began writing, learned to produce a documentary on the virtually unknown disabled Civil War soldiers known as the “Invalid Corps” and provided yours truly with some early inspiration in my adjustment to Blindness process.

Plus, she shares a story and piece of American and disability history that I guarantee you haven’t heard.

Listen

Resources

Transcript

Show the transcript

Audio: Radio turning through different FM stations.

TR:
Rise and shine beautiful people.

Audio: Lovely Day, Bill Withers

You’re listening to WRMM better known as Reid My Mind Radio. I’m your host T.Reid.

If you just stumbled across this station while turning the dial on your virtual radio, welcome!
This is the place where you’ll find stories and profiles of compelling people impacted by blindness and disability. When I’m in the mood or have something of interest to share about my own experience I’ll serve that up to you with a bit of my sofrito if you will. My combination of spices!

Today’s episode is long overdue and that’s my bad.

But, as it turns out, it’s just the right Day to tell you a story!

Let’s go!

Audio: Reid My Mind Radio Theme Music

Day:

“I’m a big advocate for doing whatever interests you because to be honest if you have a disability , disability is going to come into it whether you want it to or not.”

TR:

That’s Day Al Mohamed. She encompasses all of those things and more. An Advocate, someone pursuing her interests and a person with a disability.

Specifically on that last point, she’s a visually impaired guide dog user.

We’ll discuss her advocacy work of course, but there’s just something I find so cool about people pursuing their passion. for Day, that’s writing.

And just as she said, disability comes up!

Some of you may be familiar with Day from her time at the American Council of the Blind. But here’s something you may not know.

Day:

I think most people don’t realize even with a last name like Al-Mohamed they assume I’m American. I don’t have an accent when I speak English or anything like that. However, I was born and raised overseas in the Middle East in Bahrain. A small island just off the coast of Saudi Arabia. It’s like 15 miles across, it’s that small. I didn’t come to the US until I was 17.
[

It’s one of those things that people are like wow you’re actually a foreigner. Then I have to reveal the small cheat that my mother is American so … And then they go wow that must have been really rough for her because she’s an American and she went to this whole conservative like Middle Eastern country. And I’m like my mom was from Missouri so she went from conservative Mid West to conservative Mid-East. It was not that big of a change.

[TR in conversation with Day:]
Laughs… So did you go back to Missouri when you came back to the states?

Day:
I actually went to college there at the University of Missouri and stayed on there for law school as well. I think that’s kind of where I got my start with legislative issues and policy issues were actually there in the state.

TR:

Day was presented with An opportunity.

Following a discussion about sponsoring a bill around disability employment, a Missouri State Legislator decided:

Day:

“I should put my money where my mouth is, I should get a disabled intern. You know that’s what I should do just get a disabled intern.”

And so he just put out this call for a random disabled intern and I kind of randomly got it. When I showed up at his office he was like can you answer the phone can you talk to people. So he had no idea about the capacity of people with disabilities at all.

I think that’s kind of always stuck with me and I look for other people who kind of have that same walk the walk.

TR:

That sort of attitude can really pay off; for all involved.

Day:

And by the time I’m done he’s like “Hey I need you to write this up as an amendment for the floor Go, go, go

TR:

Ever since then, Day’s been moving.

Day:

you know when you get a job it kind of starts you down a path.
I ended up actually doing an internship at the US Senate in Ron Wyden’s office and so I ended up doing more policy work there.

Next I did law school and then I actually did some stuff with the Preparatory Commission for the International Criminal Court
before there ever was an ICC over at the Haig in Europe. They were trying to design an build it over at the UN up in New York and so I got a chance to spend a good part of summer there working with folks who were on the commission and it was amazing .

TR:

Then Day learned that the American Council of the Blind was looking for a Director of Advocacy and Legislative Affairs. This gabe her the chance to go to D.C and work on national policy.

Throughout her career, she’s worked on a wide range of topics.

Day:

social welfare, employment, technology, education.

I actually worked on Missouri’s conceal carry.

I kind of ended up falling into doing more disability but in general I’m a big advocate for doing whatever interests you because to be honest if you have a disability , disability is going to come into it whether you want it to or not.

I was with the American Psychological Association and for them I did do disability policy but I also did racial and ethnic minorities indigenous populations, some of there international development work. It was a nice mix in broad areas and I wanted to help them get started on creating an immigration portfolio because we were seeing a lot more activities in that rhelm and I think we had something to say.

[TR in conversation with Day:]
Do you have a special area that is very close to your heart?

Day:

It’s hard to say because I tend to fall in love with all sorts of different things. Which I guess in many ways means I’m a Lobbyist at heart. That word gets such a bad rap but honestly all it is is an advocate who gets paid.

You learn how Congress works and then you find people who are the experts or you find people with stories to tell and then basically you are connecting those pieces

TR:

Yes, the pieces are connecting! This advocate, is a storyteller.

[TR in conversation with Day:]

You can definiely talk that policy butI do want to get into the creative side.

I was looking on your website, DayAlMohamed.com, and you have a page that has different versions of your bio. What I thought was interesting was the policy stuff doesn’t come until the very end. The last two versions, the long version, but the other versions are really focused in on the creative endeavors, your writing. Am I reading into that too much? Is that your focus, do you really like to focus in that area?

Day:

I think part of it is (ahem!) I need to redo my website. Laughs!

[TR in conversation with Day:]
Laughs!

Day:

For anybody looking at DayAlMohamed.com I’m trying to get it to split. One is Day in Washinton which is where I cover all of my policy work and that’s where you’ll find some policy analysis and disability related stuff.
One of the things I’ve been doing , it’s almost 10 years now is writing fiction and in the last couple of years I’ve been doing more and more writing . I write fantasy and science fiction so we have books, short stories, a couple of comic book scripts, although it’s not fantasy and science fiction I recently put out a 30 minute film and I have 4 or 5 other short films as well. And so there’s been a lot more of the creative stuff.

It started out as something to do when I first came to Washington DC. My wife actually stayed back in Missouri to finish her degree and so if you’re away from your spouse for along period of time it gets kind of boring but it also gets kind of lonely so I signed up for a writing group. and started meeting with them.

I cannot laud enough the benefit of joining a group. You have other people who are striving for the same thing you’re doing. You have people who can kind of act as a sounding board for ideas, folks to critique. Having that kind of ability to have people to do that it only makes your writing better. I would say no good writing ever came out of a cave.

[TR in conversation with Day:]
So let me anticipate a question that someone would have when they hear that. Someone new adjusting to blindness would say well what about the fact that I’m blind and I’m assuming that wasn’t a blind writing group

Day:

It was not.

[TR in conversation with Day:]

How did that play. And you know, obviously this is something you’ve been doing for a long time but did that play into it in anyway?

Day:

Not as much as I thought it would. Really,..

[TR in conversation with Day:]
How did you think it would . And I’m sorry to cut you off but I want to get that…

Day:

No, no I think it’s a good one.

I think I worried that I wouldn’t be seen as a serious writer, which never happened. Or that they would question my capacity which also never happend. The group always made a point of meeting somehwere that was metro accessible. And we’re in the DC area so they were like well yeh not everybody drives and although at that time everybody else did drive they continued to make a point to only choose metro accessible areas. Even though I know that for a couple of metings it got very tough trying to find a location.

TR:

The benefits go beyond access.

Day:

There was one member who was a copy editing guru and oh my god the number of times she yelled at me about misplaced commas which you know with a screen reader is not necessarily the easiest thing to find when you put them in wrong and to go back and read to figure out where you got it. She was nice about it but she certainly still expected me to make sure I followed through on that .

That I had a strong story arc, character development. All the same kind of things. So realistically it end up with there not being any real difference blind or sighted.

[TR in conversation with Day:]
Nice, nice!

TR:

It was a nice experience for Day.

Unfortunately, she did mention how some people with disabilities reported negative experiences in other writing groups. That however, shouldn’t deter you.

Day:

I would encourage anybody, if you want to write go find a group and do it. Make a point of talking to other people about their ideas or ask them about their ideas. You can also find out about how other people have built things.

Find a group that meets regularly and a lot of things are like anything else they tel you. What you put into it is what you get out of it.

TR:

Ocasionally you may find the support going beyond notes on character development or punctuation. Llike the time day was feeling less than confident about her work.

Day:

“Oh my God I’m the biggest hack on the planet. I never want to write another word again.”
And she’s like we’re going to go out and drink some wine.

[TR in conversation with Day:]
That’s cool. That’s a nice supportive group.

I think for folks who are adjusting and new to it, it’s refreshing in a sense to know that it’s ok to have that doubt in the beginning. So you still were concerned about it but you went through with it. That’s a really important thing I think for people to grasp.

Day:

I think even if it’s a recent loss and it’s kind of tough and you’re struggling it’s a good excuse to get out . It’s a good excuse to start thinking of things you can do. What does it requirewell one is reading books so you can get an idea of what is out there and the second is trying to put your own thoughts down and whether that is personal journaling that you share with no one. Essays about your own transition or putting together fiction it’s all that same process.

I find it therapeutic but at the same time I look at it more professionally.

The more you do it the more you start finding other people like you.

TR:

Specifically other people like author of The Duff, Kody Keplinger, who’s book was made into a movie. She by the way is Blind.

Day:

Recently I had an essay that was published with one of the big Science Fiction magazines and the editor is Deaf Blind. I was like hey there’s more of us out there than you know once you start looking

TR:

Yet, it’s still a pretty big challenge to find us in the pages of books, screen plays and scripts.

Day:

I think one of the reasons I like science fiction is because it tends to be more future looking. A lot of it is very political. Things people don’t want to deal with today they’ll look at in Science Fiction.

One of the biggest problems with science fiction in general though is it
does not usually portray disability. If it does it portrays it very poorly. So basically, we don’t exist in the future. I have a huge pet peeve with that.

TR:

What would you expect then from a self described Lobbyist at heart – who uses stories to help advocate for those things that she’s passionate about.

Day:

So part of me is like I want to write it. You know we’re there. Not everything gets cured. That’s not how it works, that’s not how people work.

[TR in conversation with Day:]

Talk to me about any Sci-Fi films or books that reflect a positive image of disability. Are there any?

Day:

Ooh

There’s one book it’s actually book 2 in a series.

I think the first book is called The Hundred Thousand Kingdoms. The second book is called The Broken Kingdom. It’s by N.K. Jemisin. The protagonist is actually blind.

It’s a fantasy setting. Most of the time when you think fantasy people think like Game of Thrones. They think swords and wizards, it’s very Eurocentric

what Jemesen did is she does this in a lot of her things
she actually builds fantasy that is not. Culturally a lot of it is more African than anything else. And I love that. I love it. I’m seeing parts of the world reflected and cultures you don’t normally see reflected, that you don’t normally think of as fantasy.

I think this last year Jemesen won the Hugo Award think about it as Science Fiction’s Oscars. She won it for the third year in a row. Nobody has ever won it three times.

TR:

Day’s love of writing goes beyond genre and form.

Day:

When I started writing I actually didn’t want to write novels I wanted to do film scripts. It requires a team so I wasn’t sure I could do that as a Blind person so I kind of slid in to doing the novels and the other writing.

I had built up enough cache that I felt secure in my writing and so I actually went to a couple of local film groups. DC Film Makers and I also visited Womens Film and Video. They meet every month and they do … we’re gonna doa movie. Who wants to do different roles. It was a chance to try and experiment a little bit.

I originally came out going I’m just going to be the writer. Guess what I can do writing, no big deal. So I started meeting some other folks doing that.

[TR in conversation with Day:]
Ok, so now, when you started that you said something so I think it revealed a little bit more…

(laughs)

Day:

Laughs…

]

[TR in conversation with Day:]
I’m peeling back some stuff here.

Day:

Here wwe go!

[TR in conversation with Day:]

You said that originally the intention there was to go for film.

Day:

Yes.

[TR in conversation with Day:]

Ok, so when you were younger was that the thing you kind of wanted to do?

Day:

As a kid, nah, I think it was still novels that were my thing. But when I first started writing in DC and I found that writing group the first stuff I submitted to them were scripts.

[TR in conversation with Day:]

Ok, I gotcha!

So when did the interest in film come into play?

Day:

I don’t know! I may have to think about that because I don’t know!

[TR in conversation with Day:]

And probably the reason that I’m asking, well number one, I’m interested.

I’m in this process now of kind of going back into events from my past sort of thing right, and then seeing where these interestsstarted and its just been interesting to me. So i ask everybody right now (laughing) I’m like do you know where your thing started from. (Fading out)

(Fading in) It’s a really cool thing because it’s like oh wait, I’m supposed to be doing this because I’ve always been interested in it. And that’s what that process kind of unveiled for me. I think it’s probably the same for a lot of people. I’m just letting you know, there’s something there. Which is great. Which means you’re doing what you’re supposed to be doing.

Day:

I tend to like a lot of the writing so film, I like the short stories I really like doing the novella length work and I had a good time working on the two comics that I did. It was a lot of fun.

[TR in conversation with Day:]

Visual, it’s comics, but you wrote it.

[
Day:

I wrote it. I was partnered with some really good artists and the nice thing is generally in comics the decisions of what the art images are supposed to be is usually left to the artist.

TR:
Quick recap.

Day decided to pursue her interest; writing. Ultimately she was interested in writing for film, but she was uncertain how she could go about that being Blind.

Then she found her “in”. It’s specific to her, but the idea is universal.

She found a bridge or a means of getting her to her destination. In this case, writing films.

There can be multiple ways to create such a bridge. Sometimes it’s having someone close to you to share in the experience.

Day:

As the fun couple thing, my wife and I usually take turns a couple of times a year. We pick out something we want to do. She picked ballroom dancing one fall so a few years ago I said I want to do a film class and I want you to do it with me because I don’t think I can do it. There’s that as a Blind person I don’t know how it would work. I’m totally secure in writing one and I’ve been meeting with these other film groups so I have an idea how it works but I don’t know if I can actually do it. Getting cameras and all these other thingngs working well , so she said sure.

We signed up for a film classwith Adel Schmidt, who’s with Docs in progress – which is a documentary organization in Silver Springs. I’m just going to call her out by name because she was awesome. She’s like yeh, I’m not sure if you can either but let’s just go with it and see if we can figure it out.

[TR in conversation with Day:]
Nice!

Day:

She says you always start with the story.

It was like a 6 to 8 week class. You should have a one or two minute either short film or clip or trailer.

So you write out the narrative about what you want to say. You need to make sure it has a good narrative arc , it has rising tension and a climax. All the things you want in good writing. Then you record the whole thing.

Audibly reading the script. That helps give you the timing.

Then figuring out what images you want to slotin at what time.

So I know at 1 minute and 10 seconds where I say this I probably want an image of this. And being able to kind of almost wriggle this grid of what the film would look like.

And then you can go to either finding a way to record the film or finding images that already match that.

[TR in conversation with Day:]
So is that storyboarding?

Day:

Right, I guess you could say it kind of was storyboarding out the whole thing.

We figured out that would be a way that I could control what was happening when making the film. It’s not somebody else making it and then me going here are the images that I think and then if we did or didn’t get those what would be the next alternative. Let me see if that works Maybe I need to change the language and then slot in the images. We talked about would there be good transitions and how to do those. I’ll admit the transitions I had to rely on somebody else to figure out whether it looked really great or not. And then adding a layer of sound effects and then a layer of music on top of that. When I got done that’s what the trailer to The Invalid Corps is. And I used that for my Kickstarter video to fund making the 30 minute documentary.

At least now I know I have a way to make videos that this will work where I can say I control it. It’s mine because there was always that little bit of doubt that if I did it with somebody else oh yeh the the person who is sighted really made the film. With this one there was no question who made it.

Audio: Civil War Marching Drums…

TR:

The Civil War, is the setting for The story of the Invalid Corps.

Day:

My wife is the Archivist at the University of Maryland , University College she does all sorts of historical research and she often heard about them because there was this song and it ended up being real popular in the 1880’s but it really made fun of them. I’m like what is this Invalid Corps. So I started playing around on the internet and finding out more and a little bit more and then I’m like wait a minute, there’s a lot more to this.

Audio: The Invalid Corps (Song)

Day:

We hhear about how many amputations there were and how many injuries and how many deaths, but nobody ever stopped to ask what happened to those guys after they were injured or after they lost a limb.

TR:

Low on man power, rather than discharging injured soldiers, an all disabled regiment was created.

They did things like;

guard supply stations, trains and other property
Work in hospitals and prisons

Day:

They created 24 separate regiments.

[TR in conversation with Day:]
Confederate?

Day:

Union.

[TR in conversation with Day:]
Ok, good! Laughs.

Day:

They did a lot more than people give them credit
for.

It’s a pretty awesome story.

Audio: Snare drum: colonial marching…
So the year is 1684. The war has been going on for three years now. General Grant’s making his final push through Petersberg and on to Richmond to take them down at the end.

He pulls every soldier, every able bodied soldier out of the North and basically their all marching on to Richmond.

So he’s putting a lot of pressure on Robert E Lee. They can’t get out they can’t get supplies. In this kind of desperate attempt to break that siege Robert E Lee sends General Jubal Early, this Confederate General, he sends him North…”Cause as much trouble as you can”

Here’s the issue, because Grant had pulled everybody out there wasn’t really anybody to stop Early . So Early heads North through Virginia and rather than crossing at Harpers Fall he goes up and around through Maryland and then he comes down South towards DC — think of a reverse question mark.

Because there’s nobody there to stop him, he makes it all the way to Fort Stevens which is about 4 miles North of the Capital.

There’s nobody there except some clerks, some government officials, and this Invalid Corps.

You got these Invalid soldiers on the wallsof Fort Stevens and in front of the fort basically having to hold out against like 15,000 Confederate soldiers.

Until Grant suddenly realizes “Oh my God we’re about to lose the Capital! puts the entire Civs Corps on boats and sends them up river going as fast as they can to get to Washington before Early does.

These guys hold out for 24 hours until reinforcements arrive.

The thing is Abraham Lincoln was on the Ramparts of the Fort that day and they even took pot shots at him. They ended up shooting a soldier who was a few feet away from him. They could have taken down the Union or at least taken out the Presidency.

[TR in conversation with ES:]
Wow! That’s an awesome story!

Day:

I know!

History that’s kind of gotten lost and there’s some amazing things. One of the soldiers, he was assigned to the Provost Marshall’s Office, so people knew of him as a Provost Marshall soldier but He’d actually had a disability and was with the Invalid Corps and they just decided to put him there. He was one of the guys doing the detective work to figure out who assassinated Lincoln. So he helped with the hunt for John Wilkes Booth. So he’s like I know where he is. He was doing the tracking, but he was called back to Washington so if was a different unit that got the prestige of saying they caught him. Well, basically he died!

The soldiers who were supposed to guard the conspirators, all of them were Invalid Corps.

The only soldiers who were allowed to carry Lincoln’s caufinalso was that unit.

[TR in conversation with Day:]

Wow!

Day:

I know!

This piece of history, basically disability history that nobody has really researched or talked about.

TR:

A significant amount of research time went into creating this documentary. It’s not as though there are books available on the topic.

According to Day, there are a couple of people currently working on writing them now.

In the meantime, the documentary is done and ready for the festival circuit.

Day:

I want to give it a year where I’m sending to festivals and trying to look for places to screen it and after that I’ll look at finding ways that people purchase it.

It has both captioning and audio description.

The film was crowd funded Shout out to all of the amazing people who helped fund that.

As a part of supporting disability creativity sort of thing, I think there are maybe one or 2 exceptions and this is out of a couple of dozen.

Every single person who has worked on that film either has a disability or is a veteran.

It’s not like I asked flat out going do you have a disability because the 2 I don’t know about I didn’t really ask.

I wanted to make that a part of the way the film was made.

TR:

I get the sense that “walking that walk” and pursuing one’s intrests, aren’t just personal practices for Day. It appears to be a message she spreads.

I want a talk about your bucket list.

Number 1 that is so cool and scary at the same time. I said Oh my gosh. I don’t know if I would want to put out my bucket list because it kind of keeps you accountable because people are going to be watching it.

Day:

Right!

[TR in conversation with Day:]
Which is a great idea. And then I saw that you challenge people to put their own bucket list . I started reading that and I was like awh damn!

Day:
It’s accountability but it also gives a picture of who you are to other people and it encourages other people to go yeh, what do I want and where do I want to go.

You’re doing this thinking where you going back and looking where you started. I think a natural out growth of that is a bucket list looking forward.

[TR in conversation with Day:]

I never really considered doing one. I never really did, that’s something I’m going to take away and start thinking about.

Two things from your bucket list I found kind of interesting.

How are you doing with the guitar? You have an electric and an acoustic now?

Day:
Yeah, I do. I still only know like 6 chords.

[TR in conversation with Day:]
That’s not bad

Day:

It’s not bad but I still need to work a little bit more on it.It’s actually one of the very few things I do that I can say is just for me and only me. And one of the only things I find relaxing. I have a hard time whinding down.

[TR in conversation with Day:]

The reason I ask you that is I got me a guitar a couple of years ago also an electric. My daughter has an acoustic and I kind of took that and started playing and now I like the acoustic better. It’s more forgiving than the electric.
Similarly I find it very relaxing. I have to get back into it because I had a little carpel tunnel…

I do want to someday be able to play with some other folks. I think that would be cool.

Day:

Right!

[TR in conversation with Day:]
That might be on my bucket list.

Day:

You know when the best time to have and use a guitar, Christmas. If I could do 5 Christmas songs. they aren’t usually that complicated. Everybody knows a Christmas song. I have a whole year to come up with 5 songs. That means I need to learn one every other month.
I could do that that’s not terrible.

[TR in conversation with Day:]

I’m gonna have to checkup see how you’re doing. Laughs

Day:

Laughs I’m gonna be in so much trouble come Christmas.

[TR in conversation with Day:]

Now you have one on there number 5 and it says something about being a mentor /inspiration. I don’t think I told you that in 2006, that was my first PCB Conference.

Day:

Was it really?

[TR in conversation with Day:]

Pennsylvania Council of the Blind . That was the first time you were there.

Day:

I do not believe that man, when you rolled in with so much swagger. Come one. Seriously.

[TR in conversation with Day:]
Yeah, That’s just that New York thing!

Basically two years after losing my sight.We were a new chapter and I was one of the folks who started the chapter out here in this county. I just learned so much that week. You were a big , big part of that learning. You did a keynote at that banquet and it was all about whose in your audience.

Day:

Yeah!

[TR in conversation with Day:]
I know, I remember this. And so I really took a lot away from that.

Then later on in 2007, was my first time going to the ACB Legislative Seminar and once again there you were. You were talking about Eugenics and disability. And againI’m very new to disability at that point. So you truly opened my mind and inspired me to kind of dig deeper into what disability means and what it doesn’t mean. I think you should reconsider number 5

I think that this interview has been long overdue. You know I get a little nervous too. I look at certain people as inspiration and I usually don’t like to use the word but in this case it does apply.

Day:

Well thank you . That totally makes my night. Actually it totally makes my year. That’s kind of awesome!

[TR in conversation with Day:]
Laughs.

That’s along overdue thing I should have told you.

TR:

I truly mean that. It’s not only long over do that I share that story with her, but to also share Day’s story with the RMM Radio Family.

Thinking about it, this actually is the perfect time. This episode is a great follow up to the last; Disability Representation in Media

Day is telling stories including disability whether in the subject matter like the Invalid Corps, the inclusion of characters and of course making it all accessible.

And she’s continuing to inspire yours truly, this time not as much from a far.

Day:

So I got to ask, what are you thinking about writing?

[TR in conversation with Day]

(Breathes in deeply!) Laughs!

Day:

You hinted at it, you hinted at it! I’m not letting it go.

[TR in conversation with Day:]

Wow! You know what I always wanted to do. And this would be something that’s on my bucket list. That’s why I was interested in the documentary. I love documentaries. Like I love that.

I’m really just trying to figure out what that specific topic is what that story is that I want to tell. I do love stories, period.

Day:

Well awesome. You should totally do it.

TR:

Big shout out to Day Al-Mohamed.

[TR in conversation with Day:]

Day, I truly, truly appreciate this. Thank you so much it was a pleasure speaking with you.

Day:

Well, I am so glad you invited me to be on your show. I kind of love listening to it so I’m like look, look I’m on the podcast!

[TR in conversation with Day:]

Laughs!

TR:

How cool is that?

Does that make you want to pursue that thing you always wanted to do?

You too can find a way to take you from where you are today to where you want to be tomorrow. It may not be a direct connection, but remember, it’s not necessarily about the destination it’s all in the journey.

I hope this podcast can serve as a bridge for those adjusting to blindness and disability. Connecting this group of people with cool blind and disabled people. Exposing them to new ways of thinking about disability.

Since this conversation I’ve already been doing a lot more thinking about creating a documentary. I believe it’s something I could really do!

I’ll have to add that to my bucket list.

You can check out Day’s bucket list with over 150 items. Plus so much more about policy, writing and more.

Day:

My websites:
DayInWashington or DayAlMohamed.com
If you ran a search on Amazon you can find all my books and writings.
I still have a lot of fun on Twitter That’s my name @DayAlMohamed

TR:

Remember, if there’s a guest or a topic that you want to hear from or about let me know. Chances are if you’re interested so are others. Here’s how you can get in touch, but first, stay in the know, don’t miss a show.

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!

Audio: Reid My Mind Radio Outro

Peace!

Hide the transcript

New Year New Opportunity

Wednesday, January 16th, 2019

Happy New Year!

I guess I couldn’t stay away as long as I initially thought! While not a full length episode, this is just a quick update with some thoughts on my employment status, moving forward with this podcast and in general my outlook for 2019.

If you like listening to music on Spotify, you can now also listen and subscribe to this podcast on that platform. Otherwise you can find it on Apple Podcast, Spotify, Google Podcast, Sound Cloud, Stitcher, Tune In Radio or wherever you get podcasts.

Remember, each episode includes a transcript below.

Listen

Transcript

Show the transcript

Audio: New Year’s Countdown… “Happy New Year…

TR:
1,2, 1, 2… Alright, 2019 Reid My Mind Radio is back!

Audio: Reid My Mind Radio Theme Music

TR:

What’s up Reid My Mind Radio family?
Happy 2019!I hope you all had a great holiday season.

If this is your first time checking out the podcast, I’m very happy to have you here.

Since the end of 2014, I’ve been producing episodes featuring interviews with people I believe have an interesting story. I have focused on people with disabilities, most often those who identify as Blind or Low Vision or in some way have been impacted by blindness.
In addition to that I occasionally share stories from my own experience adjusting to blindness.

Audio: from A few of my favorite things episode…]

As I mentioned in the last episode focusing on my favorite things was truly important. I realize there are just some things that require me to be intentional.
I’m not saying I don’t know how to have fun or enjoy myself… actually I can be pretty entertaining at a party. Still, more than often there’s a bunch of serious stuff that’s always in my mind ready to take over and dominate.

I like to think of my mind as a stove top with multiple burners. Sometimes your standard 4 burner stove top (audio: 4 gas stove tops lighting)and at other times one of those fancy 6 to 8 burners.
Of course, those things requiring my immediate attention get place in the front. However, I never turn off the back burners, rather I let them simmer on a low fire cooking as I take care of the other dishes.

As we approached the holidays, I was feeling as though my mind was telling me it was time to turn off the stove all together. I mean who would want to leave the stove on when they’re going away, either physically or figuratively speaking.

Audio: sound of a flame lighting into a large fire…Eddie Murphy “Now that’s a fire!”

So I went away!

Audio: a chill Hip-hop beat grooves underneath…

But turning off the burners isn’t that easy! I guess you can call it an auto pilot that lights up when it wants to. The trick is to just shut it off as quickly as possible. And for me that requires constant work. Yes there were the occasional moments when one of those back burners lit up, but I did remember to turn it off and focus on enjoying time with my family.

In the last episode I eluded to one of the biggest pots cooking away on the back burner; the notice that my job is being eliminated.

Audio: Flintstone, you’re fired! From, The Flintstones

To be clear, my job elimination is exactly that. The company I worked for was purchased. The new company simply is eliminating redundancies. Think of that show called storage wars

Audio: Scenes from the show talking about the price of various items…

pawn shops or antique dealers purchase foreclosed storage rooms. They do so because they know they can sell off individual items the total of which will reap them a good return on their investment.

Well, that’s what happened here. The more they sold off, the less they needed the legacy group.

This leaves me with a serious reality check. Some real considerations;
I’m 50 and companies like young blood
Inaccessibility is a constant threat
most of my technical experience is outdated and
I’ve been comfortably working from home because of some real transportation issues.

Yet with all of that, I believe I’m a real catch for almost any organization. I have a lot to offer, but at this stage in my life I’m feeling like I would have to really find a company that’s worthy. Bold statement? True! But if I don’t believe in my value who will?

I’m doing a lot of thinking about this both as it relates to me and my own career as well as trying to pick out aspects that can be helpful to others.

Like those who are now themselves looking to return to work after an acquired permanent disability.

Maybe others who are coping with job loss and finding that either their specific skills aren’t required or employers prefer a younger staff. the impact here obviously goes beyond blindness or disability.

Maybe this is a full podcast episode, a blog post or just some thoughts I share randomly on Twitter.

If you have a related story to share on returning to work following a disability, are you a midlife career switcher or perhaps you experienced ageism in the work place let me know. email me at ReidMyMindRadio@gmail.com. Maybe we can make a full episode from such a discussion and hopefully give some real advice to others.

Audio: Doe, Rae, Me, Fa , So La, Tea from Sound of Music

On that note, one of the other pots on the burner is this podcast.

I’m always thinking about ways to keep it fresh both for the listener and me as the producer. I know that if I want to improve I have to find new ways to communicate ideas. Some of that will be in the actual words, the production and the approach.

I am particularly interested in more collaboration.

First, I really want to increase interaction with 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 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.

Then there’s collaboration with other podcasters and audio makers, writers, producers and creatives. I’m not exactly sure what this will turn out to, but I’m feeling like there’s just some real opportunity for some fun, relationship building and mutual growth that comes from working with others. This could be teaming up to work on a project that is published across multiple podcasts, blogs. It could be sharing ideas that are best fitted for different voices. I don’t know the specifics but I know I am open to it. I also strongly believe there are some who themselves may be thinking along these lines so I want to make sure I am clear about my willingness to create with others.

As I continue to expand the scope of this podcast, I’m reminded of why I initially created my blog back in 2006. I just wanted my own little space on the internet where I could share my thoughts and observations as I was beginning my new experience through the world of adjusting to blindness, becoming a person with a disability and all that came along with it. I wanted to meet others with similar experiences.

This podcast continues to be personal. I mean it’s called Reid My Mind Radio after all.

To some extent it’s a reflection of my own adjustment to blindness and even how I think about disability. Both of these being an ongoing process.

One of the things that I found helpful in my early adjustment years was that exchange of information with other Blind and Low Vision people. As I expand and continue to consider the larger disability community as a whole I feel the need to find others in order to exchange ideas and develop my own way of thinking about and living with disability.

I want to challenge myself to do more with this space. I have to admit it, that’s sort of scary to say knowing someone is listening and may call me out on that. But at this stage in my life I’m feeling like it’s scarier not to do it. Plus, I’m from the Bronx baby, we don’t scare that easy!

In 2019 we will continue exploring audio description from different angles. It’s a service and I dare to say art that is for us. The Blind and low vision community. Shouldn’t we have more of a role not only in providing feedback but also as participants in its creation?

There’s some other things that affect the community that deserve more attention. I’m hoping to make them conversations as opposed to me getting on my soapbox.

Speaking of soap boxes; If you enjoyed the 90 plus episodes to date, if you like the sound of where this is headed you need to …

Subscribe!
Apple Podcast, Spotify, Google Podcast Sound Cloud, Stitcher, Tune In Radio or wherever you get podcasts.
Visit www.ReidMyMind.com

So there’s no confusion, that’s R to the E I D like my last name!

Now, it’s a new year, new opportunities and there’s only one way to look at that!

Audio: Flintstones “Yabba Dabba Doo!”

Audio: Reid My Mind outro

Peace!

Hide the transcript

Reid My Mind Radio: Get On Board With The Blind Captain

Wednesday, September 27th, 2017

Ahmet in his kayak on a blue sea with a beautiful beach in the background.

Holman Prize winner Ahmet Ustunel says the water is his “happy place.” Hear all about his plans to be the first blind person to independently kayak from Europe to Asia… alone!

Plus the water being my Happy place means Ahmet and I have at least two things in common.

Resources

Transcript

Show the transcript


TR:

What’s up RMMRadio Family…

If you’ve been here before, welcome back! If you’re a new jack, come on in…
take your shoes off if you like, it’s
not mandatory in my house, but I do want you to be comfortable.

Let’s get it! All aboard!
All Aboard!

[Audio: Ship Horn]
[Reid My Mind Theme]

TR:
In this second of our three part series, we’ll meet another winner of the Holman Prize.

The prize is named in honor of James Holman.
Known as the Blind Traveler, Holman completed a series of solo journeys taking him to all inhabited continents.

Sponsored by the San Francisco Lighthouse $25,000 is given to each of the winners who are all legally blind and in their own way exhibit the adventurous spirit and attitude of James Holman

Ahmet Ustunel Our featured Holman Prize winner today like James Holman, is quite comfortable on the water.

I spoke to him via Facebook Audio while he was at home in San Francisco.

Ahmet:
I am originally from Turkey. I have been in the US for about 11 years now.
In my free time I like water sports. I like swimming, kayaking, fishing, sailing.

I’m totally blind since the age of two and a half or three due to Retinoblastoma.

[TR in conversation with Ahmet:]

I’m also a Retinoblastoma survivor Sir.

Ahmet:
Man, yeh, wow!

TR:

Retinoblastoma, is a rare childhood eye cancer that usually affects children before the age of years old.
By rare we’re talking about seven thousand children a year.

In the US and other developed nations the survivor rate is
around 90 percent with significant children losing sight.
In under developed nations, the rates are reversed and children’s lives are lost.

One common sign possibly indicating Retinoblastoma is a
white reflection in a child’s eye resembling that of a cat’s eye reflecting light.

Early diagnosis and treatment are key to saving both lives and sight.

By the time Ahmet’s cancer was detected, doctors in Turkey
were out of options to help.

Ahmet:

One of my relatives was in Germany working at a children’s hospital as a janitor so my Gran Ma took me there and they treated me there with radiation an enucleation.

TR:

Enucleation or the surgical removal of Both his eyes, Ahmet returned home to Turkey now as a blind child.

Ahmet:
I was lucky in terms of having really supportive people in my family. I grew up in a really big family. Everybody had a different approach in terms of blindness.

I was the only blind person in the family and even in the town I guess. I didn’t know any other blind person.

[TR in conversation with Ahmet]

Wow! How big of a town are you talking about?

Ahmet:
Maybe like ten fifteen thousand people.
Then I moved to Istanbul which is like fifteen sixteen million people and that actually changed my life.

TR:

Ahmet was aware of the contrasting dynamics in his family as it pertained to his blindness. Some were over protective while others wanted to help him do the things other little boys were doing.

Ahmet:
Ride a bike, tie hooks on a fishing line… avoid Sting Rays when you are swimming.

TR:

These early lessons in the ability to make something accessible played a role in his education and future.

After not being accepted in a mainstream school , Ahmet watched as his peers went to school at around 6 years old.

Moving to Istanbul his parents tried to enroll him in the only school for blind children. With a waiting list Ahmet wouldn’t begin until he was 8 years old.

Attending school during the week and returning home on weekends, Ahmet credits this school with teaching him valuable life skills.
After 5th grade he would attend a mainstream school.

Ahmet:
They send you back to mainstream school with no support. So you go back to school with no books and no teachers for the blind.

I was the first blind student in the school. I had to prove myself as a blind person.

TR:

At an early age, Ahmet took his education and future into his own hands.

Ahmet:
I was walking around with my Walkman and asking everybody you know, can you read me a page or two.

[TR in conversation with Ahmet]

So you were basically learning to advocate for yourself at that young age?

Ahmet:

Oh yeah I mean absolutely I mean there was nobody to advocate for me.
I could choose to sit around and do nothing you know get a C and pass, but if I really do well then people and teachers and you know the principal will understand that I can do stuff and they will let me stay. And if I cannot do it
I will just withdrawal myself.

TR:
Ahmet when on to not only prove himself to the administration but gain the confidence in his own abilities.

He studied Psychology in college where he met his wife, a US exchange student.

But his early life exposed him to more than academics

Ahmet:

When I was in high school my school campus was right on the water, you can literally jump into the water from the campus.

[TR in conversation with Ahmet]

So is that where the kayaking came in, from high school.

Ahmet:
No actually I did a lot of you know water related activities since my childhood as I grew up by Black Sea.

When I was in college I use to go rowing and stuff, but I haven’t started kayaking until I came here.

TR:
A Kayak is a very narrow boat like vessel. You steer and move the kayak with a paddle that has a blade on each end. They average about 25 to 35 inches wide and 12 to 19 feet in length.

Ahmet:

So let’s say you have a kayak nineteen foot long and twenty eight inch wide. You can go really fast but it will be a little tippy.

If it is twelve feet long and thirty five inches wide it will be really stable but you will go half as fast as the nineteen foot one.

It’s made of either corrugated plastic or fiber glass, there are some inflatable models.
So you sit in it. And you’re like really close to the water if you put
your hand your right there the water is right there. So you’re like maybe four inches above the water.

And you have a spray skirt which covers the kayak. So if you have a splash water doesn’t get in and if you flip over you are upside down but know water gets in.
So you have to pull the skirt off the kayak and get out of the kayak and flip it over and get back in. Or you can do the special row it’s called Eskimo row. Without pulling the skirt off you can flip the kayak back and keep paddling.

If you go paddling in cold water like San Francisco the water temperature goes below fifty degrees most of the time. So you don’t want to stay in that water more than 15 minutes. If you stay more than 15 minutes they say Hypothermia kicks in.

TR:

So what does Kayaking have to do with the Holman Prize?

[Audio from Ahmet’s Ambition]

You’re listening to Ahmet’s Holman Prize Ambition video where he explains what he would do with the 25 grand.

[Ahmet in Video……]

I have been kayaking for about 10 years and I always wanted to be able to paddle independently. If I win the Holman Prize I will equip my kayak with high and low tech devices that will enable me to navigate the kayak by myself.

TR:
His mission…

[Ahmet in video…]
My dream is to be the first blind person to paddle from Europe to Asia by crossing the Bosporus Straits.

TR:
You heard him correctly…
[Audio: Tape rewinding ]

[Ahmet in video…]
My dream is to be the first blind person to paddle from Europe to Asia by crossing the Bosporus Straits.

TR:
Exactly what is required for someone to non visually, independently navigate their way through the Bosporus Straits from Europe to Asia?

Let’s start with the Kayak

Ahmet:
The kayak I’m going to use has kind of like fins going down from the bottom of the kayak kind of like penguin feet. And so you can pedal with your feet if you want or you can just do a classical paddle strokes.

I want to keep my hands free because I’m going to use whole bunch of different technologies.

TR:

No surprise here the technology includes an iPhone.
Ahmet:

I’m going to use a G.P.S. app – Ariadni G.P.S.

You can mark way points and it will let you know when you get close to that way point.

It also has a compass with degrees and tell you how far you are from your way points. And then I have a talking audible compass. Similar thing it will tell you degrees and you will set you course before you start and it will tell you if you are off course.

[TR in conversation with Ahmet]
and you will South your course before you start and it will tell you the field

Is that a separate device or is that an app?

Ahmet:

It’s a separate devise.

I will also have parking sensors or security cameras sensors.

[TR in conversation with Ahmet]
Probably the same thing they use when the cars park themselves… right?

Ahmet:

Right, right right! You know when you’re backing out so if you are about to hit something it beeps.

I have a depth whisperer.

[TR in conversation with Ahmet]

D E P T H?.

Ahmet:
Yes.

[TR in conversation with Ahmet]

Ok at first I thought you said death (laughs) I was like I don’t like that one!

Ahmet:
Laughs… I hope not!

It tell you if there’s shallow water underneath the kayak. If you are about to hit a rock or something .

TR:

Ahmet does have to prepare for all scenarios.

There’s redundancy in his technology so if one device fails another can provide the same or just as useful information.

Not all the technology is off the shelf. While searching for the best methods for non-visually navigating his way through the water Ahmet
came across Marty Stone.

Marty is an AT&T I.T. Project Manager by day and after hours…

Marty:

I’m just one of those people that like to tinker with things.

TR:
Marty created a device that simply put:

Marty:
It was developed to allow blind people to get a kayak and race it in a straight line and then turn around and come back.

TR:

Reading about this device, Ahmet reached out to Marty who decided to expand on the original design.

Marty:
Now we’re working on something that not only includes a compass but gyroscopes, accelerometers, and three different axis.

So you get a lot better information as far as movement and heading. We’ve got a G.P.S. module that’s it’s married to along with Bluetooth. That’s going to be interfaced with a device Ahmet will be able to wear on his life vest that will have some buttons that either he can program in some coordinates or commands to the system that he’ll just wear a headset and it’ll talk to him.
It’ll tell him that in order to get from where he is to his next way point he needs to row in a certain heading direction. And if he gets off course the system will tell him to paddle more on the left or paddle more on the right. And when he gets to a way point it will let him know and then he needs to change his heading to another course direction and then it’ll tell him that.

TR:
With both equipment and technology accounted for, Ahmet needs a few more things to be fully prepared to reach his goal; first a plan..

Ahmet:
Istanbul is a city on both continents. And we have this Bosporus Strait that separates the city into two different parts. And the area I’m going to cross is about three, three and a half miles which is not a big physical challenge, but it has heavy traffic.

A lot of ships like tankers, containers, fishing boats, tourist boats, sailing boats you know all kinds of stuff.

These tankers are the size of multiple football fields. A small kayak would probably go unnoticed anywhere near such a large vessel. And getting out of the way even if you could see it would be virtually impossible.

Ahmet:
I don’t want to take my chance with those guys!

TR:
The Bosporus being such a very narrow waterway. Authorities closely control the traffic flow in each direction.

Ahmet:

I will listen to the traffic channel. Usually they have half an hour or forty-five minute break in between and I will do my crossing during that time.

[TR in conversation with Ahmet]
Do you have to schedule this?

Ahmet:

Well, I talked to the Coast Guard in Turkey and they .. first they didn’t believe that I could do it and I showed my videos to them and they said ok do whatever, we don’t take any responsibility.
(Ahmet and TR Laugh)

There will be a really fast boat watching me from the shore. If something goes wrong they will come and pick me up in like few minutes.

I’m not worried about the physical challenge – I can paddle you know three miles right now, no big deal. Being an expert using the technology if the key because I don’t want to have hesitation right in the middle of the shipping channel you know. That could be fatal.

[TR in conversation with Ahmet]

Why are you doing this man?

Ahmet:

I always loved the water, it’s my happy place. It’s the place I feel good about myself I feel free. I grew up in a fishing boat when I was a kid. My father was a fisherman. In the fishing boats I used to ask my Dad, you know can I steer the boat. he said yeh, you know, it’s water there’s nothing around you, it’s like miles and miles of open water. I used to take the steering wheel and just feel like I was the captain of the boat. And I was imagining like how can do something like this as a blind person as a blind kid. I always wanted to do something water related but my option were very limited in college.
If I grew up in the US I would have probably do something like marine biology.

I love what I am doing right now, I’m teaching special ed. It was always somewhere in my mind to do something water related and being able to do it independently. I have been thinking about it for a long time and I thought you know, it’s doable if I have the financial support I can do it.

TR:
I believe him. And I will admit it, partially because he is a fellow Retinoblastoma Survivor but mainly because he began as a child.
Think about the early lessons from his family helping him adapt all the different activities so he could participate…

[Audio in flashback Ahmet]

Ride a bike… tie hooks on a fishing line… avoid Sting Rays when you are swimming.

TR:
Then becoming his own advocate at such a young age and showing such determination to get an education.

I imagine these are some of the qualities seen by the Holman Prize judges who awarded Ahmet the 25 thousand dollars to complete his objective.

Ahmet:

You know, I’m not saving the world or I’m not creating job opportunities or changing the lives of blind people , but I think I’m doing something cool!

At least it might encourage younger kids to try new things. I see that my students, high school kids, they get discouraged in terms of finding alternative ways… I think it will help.

Everything could be adapted. Everything could be more accessible, that’s what I want to show. I don’t want it to be a success story of one person … he’s blind but he did that, he did this. It doesn’t mean anything you know one person did this.

[TR in conversation with Ahmet]

It’s cool, you focus on kids, you’re a teacher so that’s what you do, but for anyone, you’re pursuing your passion and that’s something that we forget in life. To be able to say you’re going to go and pursue your passion and have a dream and do it that is a universal thing that goes way beyond any sort of disability. There are people who are perfectly sighted, physical abled who are not pursuing their passion and we can all learn from that.

Ahmet:
Absolutely, yeh, I mean you know, it’s not a blind or sighted thing. It’s just I think being adventurous and take a risk take a chance.

TR:

That’s probably the final ingredient necessary to complete this mission. courage!

As a young boy on the fishing boat with his Dad, Ahmet dreamt of becoming the captain. It takes real courage to go for your dreams. I’d say Ahmet’s been captain of his ship for quite some time.

If you’re interested in wishing Ahmet safe travels or want to follow his progress, go and Like his Facebook page; Ahmet The Blind captain.

I’m Thomas Reid for Gatewave Radio,
[Audio repurposed: Ahmet ” do whatever, we don’t take any responsibility! ]

audio for independent living!

[Audio: Grand Funk Railroad… The Captain]

TR:
Being affected by the lack of accessibility is frustrating. Especially when you know the so called limitation isn’t real.

It could be a website or program that doesn’t work with a screen reader. That was a choice. Probably not an intentional one, but if made aware of the problem and
a solution isn’t sought well, that’s intentional.

Companies usually fall back on the cost and yes there could be a cost to updating a product, but there’s no real cost to changing how we think and design for the future.

Inaccessibility is frustrating when you know that the reason for technology is to make our lives better.

That was one of the reasons I wanted to reach out to Marty Stone, the developer creating an enhanced device to help Ahmet stay the course.

Marty:
You can never accuse me of being an optimistic person I’m afraid, but I do hope that we can save the world with science, I really do. The world needs a lot of help and a lot of people really don’t trust science or scientist it’s kind of shameful.

[TR in conversation with Marty]
This is what technology is all about.

Marty:
Helping people…

[TR in conversation with Marty]

Yes!

Marty:
Absolutely, the stuff I do for AT&T is great and all that but doing this other stuff… this is the best stuff in the world. Volunteering and doing this other work. Taking some of that Geek ology and helping other people’s lives.. make them better. Man that’s just the dandiest thing in the world.

TR:
We need more of a bridge between the users of technology and the programmers, engineers, scientists … nerds.
Marty:
It’s cool to be a nerd now, yeh…. laughs.

TR:

The opportunity to profile Ahmet and his story came at the right time for me personally.
For the past few years, September has been a pretty busy time here on the Reid Compound.
As a survivor and a family impacted by Retinoblastoma, my family and I have spent the past few years telling stories to bring awareness of this childhood cancer.

September is childhood cancer awareness month. This year unfortunately we couldn’t produce the stories so being able to bring you Ahmet and drop a little info about this eye cancer means a lot to me personally.

In fact, I’d encourage you to check out some of the prior videos we have produced and see how the cancer impacted their lives. While these are videos the visuals included are enhancements, the story is told verbally.
I’ll have some links on this episode’s post on ReidMyMind.com.

I’m always hopeful that a story like Ahmet’s when presented in the mainstream media is done the right way. By that I mean, find and convey his message to the wider audience. In addition to the accessibility and self-advocacy I’m always personally encouraged when I see others going for their dream.

Ahmet was already preparing for the dream. He just needed the funding. His fortune, the San Francisco Lighthouse created the opportunity. Ahmet was prepared. Some say that’s the definition of luck… being prepared for opportunity

That’s another take away for me, be prepared for that opportunity. Begin moving towards your dream.

I hope the Holman Prize winners; Ahmet and Penny are encouraging you the listener to go for your dream if you’re not already.

I hope they’re encouraging you to subscribe to this podcast just
about anywhere podcasts are distributed… Apple Podcast, Google Play, Stitcher, Tune In and Sound Cloud

The world is going to be buzzing with this next episode, featuring
the final Holman Prize winner. Don’t miss it.

Peace

Hide the transcript

Reid My Mind Radio – Connie Chiu – For the Love

Wednesday, July 19th, 2017

Connie dressed in white whith her hair slicked back looking upwards. The background is a bright white.

Photographed by,Ellis Parrinder


Connie Chiu, known as the first Fashion model with Albinism, has much more to offer than a pretty photo… a great attitude.
Ask her why she does it…. She does it for the love!

I had to ask myself what do I love to do… so I did it! I call it Connie’s Jam, check it out in this episode.

What do you just love to do? Are you doing it? Holla Back!reidmymindradio@gmail.com

Resources

Transcript

Show the transcript

TR:
What’s up RMMRadio family…

I have back to back episodes that touch on the topic of Fashion.

Although the last episode was really about entrepreneurship and goals…
Today’s episode is fashion related, but I think it’s more about attitude and doing the things we love to do.

I love working with audio,
talking to people with interesting stories and something to say.
Put those together and that’s a partial recipe for this podcast.

Dinner is served, come and get it!
[Audio: Dinner bell ringing, man announcing “Come and get it!”]
[Audio: Reid My Mind Radio Theme]

CC:
My Name Is Connie Chiu and I am partially sighted. I have albinism. The condition affects my eyesight, it effects my skin. Those two are the main things. I like to
look at it as a cocktail of conditions or a Smorgasbord of conditions to just make it sound a little bit more delicious

TR:
Delicious as in pleasing, agreeable or gratifying-
I get the sense this is an important theme for Connie.

Born in Hong Kong, at 7 years old Connie and her family moved to Sweden.

CC:
my parents thought you know she’s quite she’s got light skin she’s got white hair surely she would blend in better in Sweden with Swedish people. But I was just a little bit whiter than Swedish people and my hair was just so very very white. My features were still Chinese. So yes I did stand out in Sweden and yes I did stand out in Hong Kong as well. I’ve been to America and yes I stood out in America. So really I need to go somewhere with a lot of white Chinese people for me not to stand out.

TR in conversation with CC:
[Laughing] I don’t know where that it…!

CC:
[Laughing] I don’t know iether.

TR in conversation with CC:
Children are children so I’m going to assume when you went to Sweden, you said around when you were 7 years old, you obviously stood out in class so I am going to assume that some kids bullied.

CC:
Actually I was quite lucky you won’t believe it I was quite tall as a child. When I was about nine ten people thought I was twelve. So I think they were they
were all quite small, I thought all my classmates were so small you know boys girls doesn’t matter. I was like a head taller than what they were. I think that helped
I don’t know why but it kind of was a quite positive response. They sort of gave me gifts. They sort of gave me drawings. They gave me little presents here and there. They were just nice to me.

In Sweden they celebrate Italian Saint called Santa Lucia. Ideally you should be blonde to be Santa Lucia. In our class we had like a little vote. Then you dress up as Santa Lucia. It’s kind of a whole thing and you sing songs and you have a little parade. They voted me because of my white hair I guess. That was something positive.

It’s very hard for me to say why I wasn’t bullied in school but…

TR in conversation with CC:
I think I know, I think I know…
CC:
Oh, OK you tell me.

TR in conversation with CC:
Because you said you were so tall… I think you were bullying them? Were you bullying them Connie? Were you beating up these kids?

CC>
[Laughing…]
{Sarcastically} Yes. The secret part of my life that I never told anybody… [laughs…]

TR in conversation with CC:
I figured it out! Now, here’s the story!

TR:
Ok, Connie was not a bully. In fact, she says that as a child she was more like the quiet nerd, a real day dreamer.
Today, Connie is known as the first fashion model with Albinism.

CC:
The Thing is albinism is just one part of me.

I always loved beautiful images. I started actually behind a camera. I did an art foundation course and I was taking pictures of people and I had different ideas how I wanted my images and I try to make people pose in a way that I want. But then I kind of understood that well actually I knew exactly what I wanted so I started to take photographs of myself. It sounds crazy and I’m probably a bit crazy anyway so I just sent a black and white photo to a French designer with my phone number on the back. I did it because I admired his work, he’s a bit crazy to.

A few months later I ended up doing his Couture show in Paris. Even though I kind of liked modeling I knew nothing about it. I kind of didn’t know about the super models and so on. Of course they were all there doing the catwalk as well.

It’s just the passion of it drove me to modeling and you know it just in a way such an honor to be part of a beautiful image. iether it’s the catwalk or magazines or T.V. commercials … and it’s just great to work with talented people.

TR in conversation with CC:
The Catwalk, does that… the lights I am assuming that there’s a lot of lights and people taking pictures, how does that impact you?

Yes.

Well I wore my lenses, my light protective lenses and they were absolutely fine with it. Jean-Paul Gaultier and his team. Sometimes that’s all you need it’s not like big adjustments.

TR:
Accommodations that enable participation from a person with vision loss or other disability for that matter are often quite easy. The challenge is less about how to adapt but rather attitude.

despite Connie’s optimistic view on life, she still has to deal with situations where those she works with are less interested in accommodating her needs. Even when it’s something simple, like light protective lenses.

during a commercial shoot , producers ignored her request to reduce the room lighting.

CC:
I did point out to him that my eyesight is light sensitive. We’ll probably need to sort of work around the lighting so they were aware of that. So when I got there I saw that the light was too strong. I stood in the light, I stood on the set, it was too strong. I told them it was too strong. They turned the light down
a little and I said well actually it’s still a bit too strong.

In the studio a whole wall was just Windows really so there was day light on top of the studio lights you know.

So I said the them , Well actually if you could cover up the windows behind the camera that would take a bit of the light away and that would really help me. The team who did the interview all they said was actually we want as much light as possible. At that point I thought OK that’s the way it is.

TR:
She even told them she had her light protective lenses and
it would only take a moment to retrieve and put them in.

CC:
They kind of didn’t react to that whatsoever. They just said oh let’s just let’s just get started with the interview. they wanted to do quite a lot in about ninety minutes. They wanted to ask a lot of questions. They wanted me to wear different outfits. They wanted to take a lot of photographs. So I think those were the priorities.

TR:
It wasn’t just about the discomfort of the bright light; Connie was aware that her uneasiness would be reflected in the final image.

Ironically, this was a commercial where she was talking about her condition; Albinism which includes the extreme sensitivity to light.

CC:
I also thought to myself well actually I could walk out but I’m actually not doing this just for myself.

I don’t want people to fink this is how people
with Albinism usually look. This is only how people with albinism look when they are suffering from bright light.

Somehow I don’t think they realize that actually I felt like they took a bit of my dignity away. Because they didn’t listen to me.

TR:
It’s understandable how Connie would feel that way. But remember she’s an optimist. She’s all about making things sound delicious!

CC:
The situation is not ideal but there are things I can control. I can’t control the light obviously, but I could control the things I said, the way I felt, how I answered the questions.

TR:
These negative experience aren’t enough to dissuade Connie from trying. She does things for the right reason.

CC:
For me if I love something and I’ve really want to do I just do it I don’t even think about how difficult it actually is.

TR:
Connie’s currently pursuing another one of her love’s … singing!
It took her a while to build up her confidence while
pursuing her modeling career but she’s recently released an E P.

CC:

It’s Called my Huckleberry songs. In Moon River there’s a phrase my Huckleberry friend – it sort of means very good friends. My Huckleberry Songs are sort
of my friends in a way. Songs that I really like. For Moon river I’ve written my own guitar arrangement. It’s very simple but it’s kind of the way I see the song as well because I like to do something slightly different.

I perform mostly right now in the U.K. I love it performing live because that’s kind of what jazz is about to be in the moment. And things are never quite the same even though you’re sort of singing the same melody.

I think that’s another sort of common thing with my singing and modeling is daydreaming. [Sighs, as if discovering something new!]

It’s just to be able to use your imagination and you can be somewhere else. I think that that’s really what it is to be somewhere else. And I think people can feel it. it has happened when people say like you just took me somewhere else when you sang that song. I just went with you to a different place.
I tend to go to lovely places, so do come with me! [Laughs!]

TR:

If you want to travel to lovely places with Connie; you can purchase her E P from iTunes and Amazon or on CD direct from Connie…
She’s on Facebook, Twitter and YouTube…

CC:

Connie see o double n ie. My surname Chiu.
If you just search Connie and Albino on Google, it will all come up. (…my information)

TR:
I’m Thomas Reid for Gatewave Radio…

[Audio: extracted from Connie’s opening statement… Just to make it sound a little bit more delicious!]

TR:
Audio for independent living!

[Audio: Bumper – “Alright guys, I think we’re ready to lay this first track down” – Christopher Walken Saturday Night Live skit … “More Cowbell”]

TR:
Connie Chiu’s identity isn’t wrapped in Albinism or being visually impaired. That was a very clear point she made when talking about modeling.

She’s comfortable in her skin.

While she wasn’t bullied as a child and I still haven’t found the proof that she bullied the rest of the kids,
her method of dealing with those who are antagonistic is commendable.

If you are new to being the different person in the room, for whatever reason, Connie has something to offer.

CC:
I’m quite used to it now and I think the way I am as a person I don’t walk around and think about what I look like. It sounds very strange to a lot of people because “you look so different” but to me I’m just me. And it’s not until someone approach me and asked me about my hair and where you’re from When you get those questions you know that that’s oh yes oh yes by the way you know of course compared to most people I do look different. Of
course you will have a lot of people who would like to belittle you for whatever reason they can find. For me it’s quite obvious it’s like white hair and
I’m Chinese but it could also be that I’m not that tall really. So I think if someone wants to belittle you they will find a way after a while I think you learn to read people quite well and you start to understand where people are coming from. What’s behind all the things their saying. What’s behind their behavior. For me that’s quite important to me to understand for me to respond to them. So I think when some people try to belittle me or they try to make me feel different then I just embrace it. It’s like yes I’m different so what? Have you got anything else to add? I think it’s quite important of course that you have to be quite happy with who you are and being comfortable with who you are and I think it’s is that in itself it’s a learning process; ongoing process.

TR:

And then there’s something that I’m pretty sure impacts the majority… Pursuing our interests… for the right reason.

How many of us have dreamed of dancing, acting, writing or any activity, but we don’t pursue it. We have jobs, families , responsibilities…

It’s hard to justify pursuing our dreams.

When asking Connie why she decided to model, make an E P, perform on stage…

CC:
I know it sounds crazy but I did it just because I love it.

TR:
The older we get man we complicate things.

I’ll share my own experience…
I’ve always loved music.
I hear music in everyday situations… beats and melodies.
My family will tell you, I make up songs at the drop of a dime for no reason.
Yes, they’re silly… but their fun!

Ever since gaining access to a digital audio workstation;
that’s the type of software I use to record and edit this podcast;
I started recording some of these silly songs…
but honestly, not enough.
I tend to feel as though it’s a waste of time.
But it’s no more a waste of time than watching sports on TV… yeah I said it!

When the inspiration strikes, I should record..

Like during the production of this podcast, while researching Connie’s music, I came across this one song Surfing in Rio…
It was this one particular part…

Add that with Connie spelling out her name, like a rapper

Well, I had to do it! And I thought we should send a message to those commercial producers who wouldn’t listen to Connie…
Put some respect on that name!
[Audio: An original production by T.Reid using a sample of Surfing in Rio and added some Hip Hop drum beat and scratches as Connie spelling out her name (C o double n ie…) along with some quotes of hers yes, I’m different…
I call it Connie’s Jam! ]

TR:
What’s that thing you just love to do?
Are you doing it!

Seriously, holla back! reidmymindradio@gmail.com
let me know what you’re doing – I’d love to mention it here in a follow up episode…
that could be a source of encouragement for someone else.

If you’re not, consider what Connie said and do it for the love cause it’s simple…

Like subscribing to this podcast
available on Apple Podcast, google Play, Stitcher, Tune In Radio & Sound Cloud.

Now I’m off to pursue my other dream, to some a nightmare, interpretive dancing!

Don’t judge me!
[RMMRadio Outro]
Peace!

Hide the transcript

Reid My Mind Radio – Who is Girl Gone Blind

Wednesday, November 30th, 2016

This episode features the latest Gatewave Radio piece answering the question; Who is the Girl Gone Blind?
Immediately following the piece, check out what happens when I run with a bit of inspiration from something I heard in my conversation with Maria Johnson, aka, A Girl gone Blind.

Picture of Maria Johnson

If you haven’t yet, make sure you Subscribe to RMM Radio bit.ly/RMMRadioSubscribe
– In the meantime, hit the Play button below!

 

Resources:

 

*Girl Gone Blind
*Girl Gone Blind on Twitter
*Leber’s Hereditary Optic Neuropathy

 

Transcript

TReid:
What’s good everybody, it’s me T to the R E I D!

I’m feeling good today and that’s by choice not by circumstance… let that marinate.
And in this latest episode of Reid My Mind Radio I’m featuring a piece I did for Gatewave Radio…

Check this out!

[RMMRadio Intro]

TReid:
Going blind is a real challenge.
Different for anyone who goes through the experience. It involves adjustments for almost every aspect of a person’s life.
Education, Employment mobility and independence.

Today you will meet someone sharing some of her experiences online, on the internet via her blog.

 

TReid:
Girl Gone Blind, is Maria’s space on the internet, her blog where she’s been sharing experiences, observations and information about her life as a, well, girl who has gone blind.

Her story begins in April 2013.

MJ:
I was working as a fitness instructor. I was working at three different locations and I was also running my own Boot Camp as well as doing the mom things – running around taking my kids everywhere you know volunteering and all that stuff. And I noticed there was a blurry spot in one of my eyes but I didn’t really think too much about it cause I was busy and After a month or two it really wasn’t going away.

TReid:
TReid
With no changes in her vision, she sought an answer.
Multiple optometrist, ophthalmologists ; all trying different tests…
MJ:
… many scans, MRI’s spinal taps, steroid treatments, they could not figure out what was wrong. I was completely healthy except there was a problem with my optic nerve.
>

TReid: Finally, she found a neuro Ophthalmologist who tested her DNA. In September 2013 Maria was diagnosed with LHON.

MJ:
Leber’s Hereditary Optic Neuropathy. It is a mitochondria mutation that is passed down from the mother’s side. When the mutation is triggered you start to lose central vision. It can spread into the peripheral a bit, but most of the time your peripheral is saved.

Treid:
Within a month of receiving the diagnosis, Maria was legally blind.
Her response?!

MJ:
Ok, Now what?

TReid in conversation with Maria:
So you started experiencing vision loss and then you decide three months later you know what, I’m going to do this in public! [Laughter from both]

MJ:
Yeah, I know right!

TReid in conversation with Maria:
What made you do that?

MJ:
I thought about righting a blog previously as a health and fitness Guru if you will, but I never did. And so I always had that little bug in me I think.
When my vision loss came to a point where I had to deal with it, I thought you know maybe I should write about this?
Come January I basically wrote about what I’ve been going through and what actually was going on with my vision and what it was called.
I remember clicking publish and thinking uh [exhale] my gosh I hope, I hope somebody reads this. Well I got the hugest response. Positive response on this blog and people loved it!
They loved it and they were appreciative of my vulnerability and my openness to share what had been going on with me over almost the last year. I got the bug right then and there and said you know what I’m going to keep going with this because people like it.

TReid:
There’s no one size fits all plan for adjusting to blindness.
Chances are if a person is losing their vision and seeks assistance, they will learn of the vision rehabilitation system. For those fortunate enough to receive services, it would include personalized training to aid that person to remain as independent as possible.
That can mean getting back to work or school, learning how to perform all of the tasks they once did like cooking, traveling using a computer and more.
Maria figured out what she needed to go through the process.

MJ:
I realized I needed to get my head wrapped around this whole “I’m now blind” thing!
Before I could even attempt to figure out how I was going to you know cook or you know knit or [giggles] all the other things they wanted to teach me.
I thought I need to get my head wrapped around this. I actually need therapy, and I need counseling.

TReid:
Counseling to help work through the barrage of both feelings and thoughts about the loss not only of her sight, but all that comes with that;
her independence, her perception of herself, trying to figure out what it means to be blind.
Loss, is painful!

MJ:
I would lay on my bed you know crying and crying and crying and think [uh, gasp] how am I going to be a good blind parent?
How am I going to be the mom that I was.
How am I going to be the mom that I expect myself to be?

[Soft sad piano music]

MJ:
I honestly was planning on how I was going to exit this world.
And when I would do it.

MJ:
I thought, but you know I can’t leave my kids.

MJ: So I actually did therapy and group therapy weekly for about a year and a half. It helped me to know that all of my thoughts and feelings were totally normal. The things I was doing to propel myself forward everyday were the right things.
I will rank therapy as the number one thing that has helped me adjust to this new life.

TReid:
In addition to the emotional, Maria was trained in orientation and mobility.

I assumed Maria was proficient with technology and probably received training in either magnification or screen reading software.
So I had to ask about something I read on one blog post.

TReid in conversation with Maria:
You use dictation. Is that still your choice of input?

MJ:
It is, it is, it is.

TReid in conversation with Maria:
Do you do any keyboarding?

MJ:
Ok, here’s the back story on all of that!
alright, so I was always a pretty good typist when I was sighted.
Then I’m telling you Thomas, when I lost my vision and I could not see my keyboard any more….

[Fades out and Narration over MJ…]
>
TReid:
I am a big proponent of technology for all. Especially people with disabilities.
In some sense I’m an Access Technology evangelist…
I’ll tell anyone who will listen about the benefits it affords to people with vision loss or other disability.
I’m also a strong believer in the need to be proficient enough with a keyboard if physically possible
in order to have maximum control over your technology.

I did give Maria a bit of a hard time about her reliance on dictation.
But I’m not judging her!

Judgement, that’s one of the things that’s scary about
sharing personal stories.

TReid in conversation with Maria:
Have you regretted anything you published?

MJ:
I’ve made it a real point to keep it to just my own experiences. What I’ve been through. The good the bad and the ugly and the and the crazy , the funny, but then you know there’s nothing to regret.

TReid:
So is keeping an online journal helpful to the adjustment process?

MJ:
I think where it helped me is I was able to put my emotions and my story out there and I knew inside that maybe it would help somebody else either relate or understand what I was going through. And on the other hand, I do feel it hindered me a bit because I was drumming up all these emotions that were really quite difficult for me.

TReid:
Girl Gone Blind has lead Maria to other outlets

MJ:
I knew that if I wanted to start making something of Girl gone Blind I probably needed to get on Twitter and I needed to start reaching out to all of these other avenues. And that’s where RNIB Connect Radio discovered me.
Now I do a weekly segment for them ; chatting with Girl Gone Blind as a Lifestyle Blogger. We talk about different issues and different situations that we encounter.
I also do a podcast, we call it the LHON Report. We do interviews with people in the LHON community and we also talk about our experiences.
This has turned into this wonderful place that I have set myself in and I absolutely love doing it and it’s so weird for me to say that I love what I do and it’s all because I lost my vision.
It’s been a crazy three years but I’m headed to a good place I just know I am and I’m just going to keep that arrow pointed that way and see where it goes.

TReid in conversation with Maria:
Sounds like a great plan

MJ:
Oh And I’m going to learn how to type Thomas…

TReid in conversation with Maria:
Yes! Yeah!

MJ:
Giggles… Goals, Blind goals.

TReid:
There it is! Hash tag Blind Goals. (#BlindGoals)

[Laughter from both and MJ claps her hands!… audio fades out]

TReid:
Maria Johnson is journaling her way through her adjustment to blindness. She’s a girl gone blind, but she’s not traveling alone.

She’s inviting those with LHON , those experiencing vision loss and others to ride along. Hopefully relate to the experiences and maybe even be inspired to continue on their own paths.

Remember that thing about Maria not using the keyboard?
The truth is Maria didn’t let that become an excuse for not starting or maintaining her blog.

She held on to three words that she says can help her through most things…

MJ:
IGotThis! That was my mantra. I got this!

For more on Maria?

MJ:

My website is girlgoneblind.com.
I’m on Facebook at Girl gone Blind
and on Twitter a@Girl_Gone_Blind
And on Instagram @GirlGoneBlind.

TReid:
I’m Thomas Reid

[MJ: It is, it is, it is!]

TReid:
for Gatewave Radio,
[MJ: Ok, now what?]

TReid:
audio for independent living!

Following the Gatewave story, I included a “song” created using Maria’s words specifically “I got this”.