Archive for the ‘Family’ Category

Let’s Stop Sleeping On Sleep

Wednesday, July 3rd, 2019

In this episode, I’m considering how we look at sleep and the impact that the lack of it can have on the adjustment process.

TReid sleeping on a large rock during a bright sunny day while in the background the Niagara Falls flows.

Courtesy of Raven Reid

I share some of my own experience with Non 24 Hour Sleep Wake Disorder and how that can impact the adjustment process and subsequently a person’s independence. Find out how The Dave Chappelle Show relates to all of this.

Just in time for an independence celebration!

Listen

Transcript

Show the transcript

TR:

What’s up Reid My Mind Radio Family?
It’s your brother T.Reid here bringing you another episode of the podcast. You know the one that brings you stories or profiles of compelling people impacted by blindness, low vision, disability.

Today’s episode is one of the occasional times when I share my own experience adjusting to blindness.

It’s one of those things I think many people who are blind deal with but for those of us who become blind as an adult, we really notice the difference. Well at least that’s my experience.

That’s up next!
Let’s go!

Audio: Reid My Mind Radio Theme

TR:

When we talk about the loss of access to things that impact a person’s quality of life following vision loss, transportation, information and career opportunities come to mind.

Here’s one we don’t often consider

Audio: “No Sleep” from “No Sleep til Brooklyn”, Beastie Boys

TR:

Sleep!

Audio: “Last Night, I didn’t Get to Sleep At All”, The Fifth Dimension

TR:

In 2004not too long after becoming Blind, I began having problems sleeping. Real problems. Not falling asleep but rather staying asleep at night. The consequence was I had problems staying awake during the day.

Usually late morning around 11 AM, my body would let me know it was preparing to go to sleep and there would be nothing I could do to stop it. I’d feel my temperature suddenly drop often to the point that I’d shake with chills. I’d struggle to make it to my bed where I’d often fall across rather than in.

It wasn’t just that I was too tired to get into the bed, but I didn’t plan to sleep for long.

Getting into the bed in the middle of the day well I thought that would make me be considered lazy and unproductive.

Prior to 2004 one of my motto’s was I’ll sleep when I’m dead!

Yeh, I was that guy!

Following years of my body being deprived of sleep, I honestly believed the lack of sleep would eventually kill me. I stopped going to sleep as often in the middle of the day. Not because I didn’t feel the need, nah, I had to stay awake when I returned to work.

Working from home, honestly, I could have rigged away to make sleep during the day possible. Occasionally I’d find myself waking up 20 – 30 minutes after putting my head down on my desk for what I thought was a few seconds.

This pattern continued for years.

Even though I was working from home, for me, my body’s need for sleep felt like laziness because I was uninformed.

Fortunately today we have a name for this; Non 24 Hour Sleep Wake Disorder or Non24 for short.

Basically… we all have a master body clock that gets reset every day by environmental light that’s detected by the eye and signals the brain There’s an access issue. For those who are totally Blind, the method to get the reset signal to the brain no longer exists.

Rather than getting into specific details of Non24, my purpose today is to share my experience specifically for those impacted. That’s the person who is now blind as well as their family members or those they live with who will inevitably be effected by the mood swings, the difficulty concentrating and the almost narcoleptic like sleep attacks.

I’m here for those who are constantly falling asleep during family get togethers, trips to the movies or even worse intimate conversations.

Someone who loses their sight for whatever reason, chances are they’re dealing with reduced independence, , possibly loss of a job and often even friends and loved ones who may no longer come around.

Audio: “Sweet Dreams” The Eurhythmics

TR:

I looked forward to sleep in the early days of my vision loss.

My dreams gave me access. I could freely walk without a cane or guide, easily finding people and things without a need for assistance and even regaining the anonymity I no longer seemed to have in public spaces during my time awake.

Sleep wasn’t about escaping my reality, rather it was a way to help process all of the things running through my mind. Waking up after a full night’s sleep is what helped me eventually realize I didn’t lose as much as I thought I did.

I’m no scientist, but I’d bet there’s a relationship between good sleep, hope, possibility and optimism.

I had several opportunities to talk with others about their experience with Non24. Those who were either congenitally Blind or Blind from a young age often just assumed their experience was the norm.

Several people who grew up attending schools for the Blind shared the experience of being chastise by teachers for falling asleep in class.

Others recalled how some of their most productive time growing up was during the night when they should have been asleep. These are probably some of the same people who today as adults feel their productivity is increased because they make good use of their time awake in the middle of the night while others are asleep.

I’ll never forget a young lady’s story of working at a call center where she would sometimes uncontrollably fall asleep only to have her supervisor whack her on the hand with a ruler or some object. She desperately wanted to keep her job, but her sleep cycle was off more than it was on during any given month.

It’s more than sleep!

Audio: “The lion Sleeps tonight”, Ladysmith Black Mombasa & The Mint Julips

I know people in my circle at times felt I had a bad attitude and probably attributed that to just me now being Blind and angry.

Yes, I was moody! I wasn’t getting the rest that my body desperately needed.

Blind people have been dealing with this for lifetimes.

I dealt with it for about 8 years and reached a point where I just knew I couldn’t take it anymore. I was literally losing time. Meaning I’d fall asleep and have no idea I fell asleep.

I wonder about that stereotype of the angry Blind guy. He just may be the sleepy Blind guy!

I’m not making any excuses for moodiness or bad behavior. We all have to be responsible, but for those going through it, Non 24 or any significant consistent sleep deprivation for any reason can feel like you no longer have any control.

Audio: Comedy Central Promo for Dave Chappelle Show

TR:
One night, I wanted to watch the Dave Chappelle show on Comedy Central. It was about 10:25 and the show aired at 10:30.

I sat on the edge of the bed in front of the television in a very awkward position. I knew if I laid in the bed and tried to wait for it I’d fall asleep with less than 5 minutes before the start of the show.

Audio: The Dave Chappelle Intro Music

TR:

Finally it was 10:29 and the Comedy Central voice over announced the show was up next.

Yes!

With only about 20 seconds left before the start of the show I thought, I made it.

There was no way I’d fall asleep during the show because I knew I’d be thoroughly entertained. As I sat in this awkward position I decided to stretch my back and quickly laid back on the bed during what I figured was the final commercial before the start of the show.

Audio: The Dave Chappelle Show begins in normal speed and is sped up.

TR:

I fell asleep in probably less than 20 seconds and remained knocked out for a half hour.
– Applause
– Dave Chappelle Show Closing…

TR:

The next thing I knew, I heard the closing of the show.

– No, No, No! TReid….

Audio: The Dave Chappelle Show closing harmonica!

TR:

Eventually, I’d come to find this story funny.

At the time though it really hurt because I realized I truly had no control over my sleep.

If it was just about missing a television show that wouldn’t bother me much but I was noticing small gaps in my memory. I was struggling to create and focus. The mood swings were impacting my family.

Finally, in 2012 I joined the Sleep Study that lead to the release of a drug to help those with Non24.

This episode isn’t about promoting the drug to help those with Non24.

However, my business manager says we are open to endorsement deals and a name and number can be inserted for future episodes if interested.

The business manager can be reached at reidmymindradio@gmail.com.

You may wonder what exactly prompted me to talk about this now. I you caught the timeline, I began experiencing Non24 in 2004 and said it was 8 years later when I reached that rock bottom.

Some changes in insurance this year and some good old fashioned bureaucracy left me without a way to manage my body’s Arcadian Rhythm.

I found myself once again experiencing some of the same problems. Yes, a bit of moodiness, drifting to sleep and some real brain fog that makes concentrating a real chore. I’m still finding my way out of that fog. Once again, I’m dreaming.

Audio: “Dream”, Pharaoh Monch

TR:

Finally,, let me wish all of you a very Happy Independence Day.

I’m not really talking about celebrating the Fourth of July and the signing of the Declaration of Independence. I’m talking about those who have experienced severe vision loss at any time. Those who experienced an acquired disability.

Those who find that they now have to do things differently, no matter whether that means using a form of technology, a technique or personal assistance.

I’m speaking to those who may have been born Blind or disabled and continue to assert their independence or work towards gaining more.

or came to a realization that their individual independence was reduced and decided to do something to gain or regain as much as possible.

Independence is defined by the individual. I can’t tell someone what should make them an independent person.

Whatever it is, sleep deprivation can negatively impact any activity and therefore can reduce a person’s independence.

If you find yourself dealing with this, I guess I just want you to know you are not alone. I know I felt that way at 1, 2 or 3 AM sitting up while it felt as though the rest of the world was asleep.

I’m not telling you what to do. Some people find over the counter remedies like Melatonin help them. Others alter their lifestyle and say it works for them. I have what works for me and I just hope you too can find something to work for you.

Again, I’m not recommending anything, but I am open to having a conversation that would include my specific recommendation or at least me sharing the name of what works for me. At least this is what my business manager recommends.

If you deal with Non24 or some other sleep disorder and have a specific method that works for you I’d love to hear about it. Let me tell you how to contact me… but before that a brief reminder there’s only one way to make sure you don’t miss an episode…

**

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

The No Show Show

Wednesday, June 5th, 2019

While I’m publishing an audio file I don’t consider this an official episode of Reid My Mind Radio.

I’ve been pretty busy with life but I’ll be back in two… In the meantime, a congratulations to my daughter and I’d love for you to go on over to the Disability Visibility Podcast as it’s all about podcasting and yours truly is a guest.

Feel free to check out what’s close to 100 episodes available in the archive.

Listen

Transcript

Show the transcript

Audio: Reid My Mind Radio Intro
TR:

What’s up Reid My Mind Radio Family.

Starting the show with my intro music off the jump, wow, I haven’t done that for a while.

Well, this isn’t a regular episode. I’ll explain that in a second.

First, I want to say hello to anyone new here.
Hello there! My name is T. Reid

I’m the host of this podcast where I bring you compelling people impacted by blindness, low vision and in general disability.
]

Every now and then I include stories from my own experience as someone adjusting to becoming Blind as an adult.

In most cases I pair words with music and sound design to hopefully help with the goal of making the listener challenge their own view of what being blind looks and sounds like.

Have you ever experienced times in life where you felt super aware? Like you know you’re currently in the midst of experiencing a life change.

I’ve been feeling like that for a while now and not sure exactly why. The only thing that I can identify is my baby girl Riana graduated from college yawl! Now of course that’s a big deal. She’s getting ready to go out in the world and do her thing. It’s really hard to believe that. It was just the other day when she was traveling on my shoulders. She loved it there. She would even fall asleep sitting there with her head resting on top of mine. I’d realize she was asleep when her drool would slide down my bald head into my ear. Sounds gross but I thought it was so cute. That’s love yawl.

Now she’s getting ready to do her thing and that could literally take her anywhere in the world. I’m so proud of my baby. And yes, she’s always Daddy’s baby and there’s still a place for her on my shoulders. Metaphorically of course. I don’t want another backiotomy!

Audio: Riana Reid being called during her graduation ceremony.

TR:

I guess the other feelings of change in the air are not as easy to pinpoint. I’m sure some have to do with career change and figuring out where I’m going. I’m working on several things right now but nothing really ready for publication.

I’ll be back with a real episode as scheduled but in the meantime please go on over to the Disability Visibility Podcast which features an episode about podcasting and yes, yours truly is one of the guests. In fact, if you listen to that you’ll get a sneak peek into the next Reid My Mind Radio episode.

If this is your first time here please go back and check out a past episode that is more representative of the podcasts mission. You can start with some recent favorites including my profile of Disability Visibility Podcast host Alice Wong, my conversation with Cheryl Green about the art of accessible and my interview with Day Al Mohamed where you’ll hear all about the Invalid Corps …

There’s close to 100 episodes and one thing that has been quite consistent I think at least is they continue to change and that’s a reflection of my own change and I hope growth.

I’m confident telling you right now, you’re going to like what you hear so you might as well hit that button right now… the one that says…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

Celebrating Loving & Living Blind

Wednesday, February 13th, 2019

This past January marked the anniversary of my becoming Blind. For most, this doesn’t sound like something to celebrate. I disagree. And in this episode I invited the three most important people in my life to reflect on the past 15 years.
Side by side photos of the Reid Family in 2004 & 2018

It’s not just a personal reflection. Rather something I think can be of use to anyone in the early stage of vision loss. Take a listen and hear how much there is to celebrate.

Listen

Transcript

Show the transcript

TR:
Welcome back to another episode of Reid My Mind Radio. I’m your host and producer T.Reid. In addition to bringing you profiles of interesting people impacted by blindness, low vision, disability, I also use this space to share my own experience with vision loss.

January 2019 made 15 years of being blind. I thought about this on the day that marked the event, the anniversary of my surgery. After reflecting for some time I decided it should be a celebration. So I invited three of the most special people in my life to join me.

And it wouldn’t be a true celebration without you.

That’s up next on Reid My Mind Radio.

Audio: Reid My Mind Radio Theme Music!

Audio: “It’s Our Anniversary”, Tony Toni Tone (Instrumental)

TR:

Today, I’m celebrating a gift of 15 years.

I know celebrating blindness seems strange to some so let’s make this clear right now, I’m not celebrating loss.

Audio: “Do you know what today is…” ” Anniversary!” from “It’s Our Anniversary”, Tony Toni Tone

TR:

Interesting fact, most marriages where a partner experiences a disability, end in divorce.

I know a little bit about marriage and disability, but I invited a special guest to help me think about this subject.

Audio: “The Baddest Chick”, Trina

[TR in conversation with Marlett:]

Can you please just state your name for the record?

Marlett:
Marlett Reid

[TR in conversation with Marlett:]

And who are you?

Marlett:
I’m the baddest chick!

Audio: As the music gets louder …

Marlett:
I’m your wife!

TR:
First, I asked Marlett to talk about what she felt were the main challenges to relationships impacted by blindness.
Marlett:

One of the challenges would be communicating. Which is considerably hard if that’s not something you normally do. And even between us we needed to be a little bit more gentle with each other’s feelings so that the other person can hear and then once that takes place then I think both parties would be able to work together. I think that was a huge challenge for us. Being able to work together or to hear each other because of not fully understanding how to communicate.

TR:
Poor communication impacts any relationship. Now take away the most relied upon method of communicating among sighted folks. That just enhances any existing problem.

Then there’s external forces.

Marlett:

People can be really rude!

They look at us as being different and their just curious. I remember it was our anniversary and we went to Atlantic City and we were online and waiting to get into the restaurant or it was a comedy club. I leaned in to tell you something and you bent down and the two women behind us leaned in as well. Laughs!… to hear what it was I was telling you or to see if they could read lips. And then I started telling that they’re leaning in… laughs… they’re leaning in to hear what I’m trying to say to you. This is what I was whispering to you.

[TR in conversation with Marlett:]

TR:
Laughing.. And what did I say…cause I know I probably said something stupid!

Marlett:
I know you were fascinated by it. You were like “seriously!”

[TR in conversation with Marlett:]

Yeh, I didn’t know!

Marlett:

Right. But that wasn’t like the first time which is why I told you. it was way more than once…

Or, we’re walking down the street and especially if it was men. They weren’t rude or anything, they would get out of our way . They were respectful in that regard. Not trying to mess with us or anything but they would just stare at you. I would look at them and then they would acknowledge me.

They would just stare at you!

[TR in conversation with Marlett:]

… long pause

So wait are you saying women don’t stare at me?

Marlett:

Laughs… Yeh, they stare at you too sweetheart.

[TR in conversation with Marlett:]

Ah, thank you Hun!

Marlett:

There was the time the woman tried to give you her number. You thought I didn’t know.

[TR in conversation with Marlett:]

You making this up… Long pause…
Did that really happen?

Marlett:
Such an idiot!

[TR in conversation with Marlett:]

(Regarding the men staring)

What do you think that’s about?

Marlett:

You look like them. Yet you don’t.
And the fact that you look like them kind of bother’s them. They’re fascinated like how are you able to do this and that. There’s many things that are probably going through their mind, but they’re still freaking rude.

[TR in conversation with Marlett:]

Yeh! Now the ladies they stare for different reasons!

Marlett:

Because they think you’re hot. mm hmm!

[TR in conversation with Marlett:]
Thank you sweetheart.

Marlett:
You’re welcome!

[TR in conversation with Marlett:]
I appreciate that. Do you want to share what we came up with because I always thought that was a great response to those types of situations. On how to handle it when people are leaning in to our conversations. You want to share what we came up with ?

Marlett:

It’s G, G rated! (Referring to the podcast.)

TR:

Putting my begging for compliments and attention aside, did you notice that. Listen again!

Marlett:
They look at us as being different.

TR:

She could have said they look at you as being different, but she didn’t. She said us. Just an observation.

[TR in conversation with Marlett:]

We know that relationships are tested during times of all types of hardships. We had a lot of things going on at the time that people say are the most difficult things to deal with;
We bought a house, you were pregnant, my brother passed away and then we found out I was going to be Blind.

Marlett:

Yeh!

[TR in conversation with Marlett:]
If you could kind of go back to any point in these 15 years, is there anything that you would tell yourself then that you think might be helpful based on what you know now?

Marlett:

I think I would tell myself to know the imp0ortance of total acceptance.

[TR in conversation with Marlett:]

Acceptance of what, what does that mean?

Marlett:

Finding out that you were going to be blind just to accept that. Understand that is the way it’s going to be. He’s going to be blind. So go from there, what are you going to do now? Not try to find a cure. What are you going to do? How are you going to live your life? That’s the important thing.

[TR in conversation with Marlett:]
You’re saying you sent time trying to find a cure?

Marlett:

I would say probably about three months or maybe a little bit more. I would go downstairs in the basement that’s where we had our computer at the time

[TR in conversation with Marlett:]
Heh! And it was cold down there too!

Marlett:

agrees)
It was really cold and I had contacted a lot of Doctors. I got responses back. If they didn’t tell me what I wanted to hear I’d continue.

[TR in conversation with Marlett: ]

Wow!

Marlett:

You see some of these people and they saw their wives for the first time. They have the glasses they put on and they

[TR in conversation with Marlett: ]

They had that back then?

They were working on it back then and I knew about that. I would see if you were a candidate.

I would tell my story . I got a lot of responses.

[TR in conversation with Marlett:]

What did they say?

Marlett:

One Doctor I think he realized that I was contacting almost everybody. He said to me.. let me explain something.

They would need the Optic nerve and you didn’t have the Optic nerve on the left or on the right. There was absolutely nothing they were going to be able to do. He was trying to let me know I could stop writing everybody and (laughing ) I guess stop annoying them. Although he didn’t say that. He really went into detail and I think that was my last one I got and then I stopped.
[TR in conversation with Marlett:]

So if you’re doing this and somebody’s telling you to accept it, I don’t think that would have done anything for you. Just the words, like what would have made you…

Marlett:

No, that would have done it and I’ll tell you why. No one was telling me anything. They would tell me… “Oh I’m so sorry!” “Oh you poor thing” I didn’t want to hear all that. If someone sat me down and said you’re trying to find this cure that’s not there when your husband’s there you just need to accept him. If it’s meant to be, if there’s going to be something you know you’ll come along and you’ll find it. But not to sit down here and spend hours and hours because I had no one to talk to. No one understood. I was just annoyed when they did say something which was usually something stupid.

TR:

15 years later, I can see the value in celebrating all aspects of My adjustment.

Remembering the good and bad.

All of the thoughts following the realization that I would never see again. The things I naturally thought I’d miss. The inability to see a future.

After a while though, there were breaks between consecutive days of feeling that way. Bridged by small successes along the way. Days that included accomplishments, random laughs and even short glimpses of hope.

A bit more confidence returning every day. Even if I didn’t realize it at the time. Like the realization that the things I thought I’d miss weren’t as important as the things I still had.

Like my baby girls!

A 6 year old.

[TR in conversation with Riana:]

Please state your name.

Riana:
My name is Riana. (Sounding tired or sad…)

[TR in conversation with Riana:]
Ah, what’s the matter Riana… (baby talking voice…)

Riana:
Laughs… shut up!

[TR in conversation with Riana:]

laughs… For the record, how old are you?

Riana:
21.

[TR in conversation with Riana:]
What happened to 21 Honey!

Riana
No, it was 20 Honey! And 21 is 21, 21, 21 cause that’s what 21 Savage says. Duh!

TR:
And that little baby who was born just prior to me losing my sight.

Audio: “Hi my name is Raven!”

TR:
Well, that was her at about 3… here she is now.

Raven:
Hi, I’m … (laughs)!my voice cracked! Hi, I’m Raven!

TR:
Two baby girls and two separate experiences of my blindness. Well, maybe some overlaps.

The differences seem expected. One knew a father with sight the other never really did.

Let’s start with Riana.

I asked both of my daughters to give some advice to a little girl who is experiencing what they did as a child of a parent who becomes blind.

[TR in conversation with Riana:]

She’s dealing with issues that you did deal with . People who stare.

Riana:
Mmmm!

[TR in conversation with Riana:]

What would you say to her in terms of dealing with those types of things.

Riana:
I’d say first off, I completely understand what you are going through, because I deal with it all the time! (Expressed forcefully)

[TR in conversation with Riana:]
What is it that you deal with?

Riana:

People staring at my father. People staring for too long. That’s what the problem is…
I feel like… (exhales in frustration) I’m trying to get my words together because my temper’s coming up! I don’t want people to view me as such!

[TR in conversation with Riana:]
Ah, so you get angry.

Riana:

I don’t get angry. I get annoyed.

[TR in conversation with Riana:]
About?

Riana:

About people. I’ll be blunt. People just don’t know stuff. Their trying to learn because they’ve never seen it before. I don’t even mean a Blind person. It can be anything. I stare at things some times. You might stare at things.

[TR in conversation with Riana:]
Laughing… No I don’t …

Riana:

I get it. I’m talking to that little girl.

[TR in conversation with Riana:]
Oh, ok!

Riana:

Saying that like she might stare at things too. Everybody stares

[TR in conversation with Riana:]
What do you think the difference is between a normal stare and a stare that becomes intrusive?

Riana:

When you stare too long! When you’re staring at people just doing regular Things. Let’s say your father has a guide dog. You’re looking at the guide do and you’re like ok this is interesting this is new, well maybe I’ll Google this and then you stop staring. But when you’re just staring a person if you literally turn the table clearly that would make you uncomfortable. Stop doing that!

I’m trying to do like the four principle things and one of them is don’t take things personally but when people are in your personal space I’m going to take it personally!

TR:

Riana’s passionate about this subject.

She’s referring to the book by don Miguel Ruiz, called The Four Agreements.

Riana:

You have every right to take it personally, but don’t let it hurt you because you have to understand that it’s all on the person and not your father or mother who lost their sight. And I know for a fact that I knew that when I was younger but I did not know how to communicate that to you Daddy because sometimes I thought that, you did say that, that I was embarrassed by you but I wasn’t . I was just annoyed by people. That’s literally been me since day one. I don’t like when people are r nosy. When we go to all white places like the diner and I would get mad that people stare. People were not staring because you were Blind people were staring because we were Black and that makes me mad.

[TR in conversation with Riana:]

Laughs.

Riana:

But I’m not embarrassed. I’m serious, I’m not embarrassed to be Black.

[TR in conversation with Riana:]
No doubt!

Riana:

You know what I mean. That gets on my nerves when people are so intrusive. I can be quiet and shy, but I do have a very strong opinion about almost everything in life so I sometimes want to communicate that opinion to these people. Stop looking. You want to learn more, YouTube. There’s literally the whole entire internet for you to learn. Or if you want to learn more come talk to him. Like ask him some questions that are not offensive you know what I mean, think before you say. So that’s what I would tell to the girl. If you really truly have a problem and they’re really staring you can go up there and talk to them and say like hey if you have some questions you can come up and talk to my father or my mother. But if you’re not going to ask the question stop staring, cause you got a phone!

[TR in conversation with Riana:]
Got a phone as in you can Google it!

Riana:

There’s computers. If you don’t have a phone or a computer there’s a local library. Like come on! There’s so much knowledge you can get! (Said very intensely!)

[TR in conversation with Riana:]
Ok, alright, alright! Easy easy, woosa!

Riana:

Woosa!

The two laugh…

Riana:

Daddy I’m rocking back and forth…

The two laughing!

It just gets on my nerves some times.

[TR in conversation with Riana:]
Ok, so now what would you say to the parent. Because you said something interesting that I assumed you were embarrassed.

Riana:

You did. All the time!

[TR in conversation with Riana:]
Laughs…

Riana:
I’m serious you did.

[TR in conversation with Riana:]
I don’t know about all the time but, but ok, ok! Part of that is because you were too young like you said to communicate back.

Riana:

Communicate how I felt!

[TR in conversation with Riana:]
So what would you say to a parent?

Riana:

That sometimes kids don’t know how to communicate how they feel. Sometimes the other person doesn’t know the words to say about the situation.

TR:

Good advice and the whole idea that the problem is with the person staring and not taking it personally… I love that.

For Raven, who was born right before I became Blind there’s no change, nothing to really adapt to. Having a Blind Dad, well that’s just…

Raven:
Just like having a Dad but he can’t drive me places. Laughs… Like that’s it. That’s the only difference.

TR:

Normal

Raven:

I thought everyone had a parent that was blind.

[TR in conversation with Raven:]

Laughs…I don’t know why that makes me laugh.

Raven:
I don’t know either.

[TR in conversation with Raven:]
It’s cute and it’s also… I think my child needs help.

Raven:
I really did.

[TR in conversation with Raven:]
No, I’m just joking!

Raven:

I have cousins. I did not process this thought.

[TR in conversation with Raven:]

No, but that’s cool though!

TR:

Laughs…Normal is in the eyes of the beholder!

Now look! Don’t let her calm approach fool you.

[TR in conversation with Raven:]
What were the questions that you got from school?

Raven:

I remember getting annoyed at certain questions because people would ask really stupid things.

Like “How does he eat?”

Like with a fork!

If someone asks like how you lost your sight, I’d be like oh cancer. I would be fine answering those types of questions. But yeah, they either ask stupid questions or it would just be like how did he loose it.

[TR in conversation with Raven:]
Nobody was like you know, teasing or nothing like that?

Raven:

I would have punched them!

[TR in conversation with Raven:]

Ok, I raised you right!

Raven:
Laughs!

TR:

Raven’s advice for that young girl who’s parent is newly Blind is a little different.

Raven:
Well, I’d tell the child that their hearing is advanced so you can’t get away with anything. So don’t try it!

[TR in conversation with Raven:]
Laughing… Oh my goodness.

Raven:

No that’s an actual thing. You lose your sight other sights (senses) get hire.

[TR in conversation with Raven:]
I pay attention. No, no it’s not!

Raven:

It’s a thing. I learn that every single year in Science.

[TR in conversation with Raven:]

They are incorrect!

Raven:

It’s like if you’re trying to listen to a conversation and there’s a bunch of conversations going on around you and you’re listening to that one conversation and you’re focused on that one.

[TR in conversation with Raven:]
You’re focused. Nothing increases.

So for example. If you have a radio in here, right. That radio only goes up to a certain volume.
Raven:

But if you plug a speaker in…laughs…

[TR in conversation with Raven:]
Laughing… No but , just because that speaker loses a button doesn’t give you an extra speaker.

The two laugh together.

Wow, my own daughter has that false belief.

Raven:

I was told that every single year of my life.

[TR in conversation with Raven:]
By who?

Raven:

My science teachers. I’d tell you the stories back in the day how like every time we’d talk about …

[TR in conversation with Raven:]
Senses?

Raven:

Senses! I’d be like hey guys my Dad only has four… laughing…

But we’d always talk about the senses and they’d be like if you lose one of your sense the other ones are increased.

[TR in conversation with Raven:]
No, it’s false!

Raven:

Did you feel that punch!

[TR in conversation with Raven:]
Yes.

Raven:

Exactly, you would not have felt it if you could see!

The two laugh…

TR:

Not only is there false information and stereotypes, but if you think about the way the word blind is used and it’s understandable why people can have a hard time accepting blindness.

More often used to describe everything other than the loss of sight.

Audio: Mix of songs featuring metaphors for blind…

“I’d rather go Blind” Etta James
“When a Blind Man Cries” Deep purple
“Channel Zero” Public Enemy begins with “You’re blind baby, you’re blind from the fax cause you’re watching that garbage!

TR:

Pair blind with other disabilities and oh boy!
As in you’re deaf, dumb and blind.

It’s no wonder that For many adjusting, blind becomes a word to run away from. I don’t think I ever had that choice.

Avoiding the word Blind was the equivalent of trying to pretend I was sighted. I just wasn’t going to be able to get away with that so why even bother.

the word that I did have some feelings about was disabled. I felt as though it ruled out all of my possibilities. Where blind was specific to my eyes, disabled seem to imply that there was nothing about me that worked. A disabled car sits on the side of the road until taken away and or repaired. Athletes on the disabled list don’t even get to suit up for a game. Once again restricted to the sidelines.

But, adjustment is ongoing. You learn new ways of thinking about it, new philosophies.

Like choosing how you view disability.

Do you see it from a medical perspective? As in we need to heal or cure it in order to fix all of the related issues.

If we cure that blindness you won’t need a screen reader. Just fix those legs and who needs curb cuts for wheelchairs. You don’t need wheelchairs.

What about an alternative perspective?

Like the problems with disability stem from the lack of access and societies negative perceptions and expectations.

I also became familiar with person first language as in a person with a disability versus identity first as in Disabled person, Blind person.

This is recognizing Blind as an additional characteristic.

Riana:

If somebody asked me what my father is, you know I might say he is Blind. He’s Black. He’s bald. My father’s probably why I’m this. Or he taught me this or he’s my best friend, I might say that!

[TR in conversation with Riana:]
Ah, thank you sweetheart.

Riana:

I might leave the baldness out but I’d say he’s Black and Blind.

[TR in conversation with Riana]

You changed my Netflix profile to say that!

Riana:

Laughs.. Yeh, baldy!

The two laugh…

TR:

But, isn’t blindness and disability something I’m supposed to overcome?

Audio examples from news segments bridged by static signal…

“He overcame the odds and conquered his disability in the most incredible way”
“Made his disability anything but a disability”
“Doesn’t use her crutches as a crutch”

TR:

We hear things like ” You do that so well I forget you’re blind Based on the common belief around disability, around blindness well, I know I’m guilty of thinking it was a compliment. But it’s not!

More than likely, it’s not said with bad intent. No, they believe this based on their image of blindness. To them not seeing it says something good about you and them. Similar to the false idea that being color blind is helpful to race relations.

I want you to see my blindness. I really want you to know what it actually means and get rid of the nonsense we’ve been fed.

[TR in conversation with Marlett:]

Do you think you look at blindness differently after 15 years?

Marlett:

Yes.

[TR in conversation with Marlett:]

Tell me.

Marlett:

Blindness affects your eyes and that’s it. Not your mind. Not anything else. You just got to do things differently.

TR:
My blindness is now a real part of me. Like other aspects of who I am it’s reflected in the things I do.

My blindness is in the way I walk down the street. And yes, my blindness still has a bop to it!

My blindness is in how I raise my kids. The way my family and I travel. It’s right here in the way I produce audio.

I once thought my podcast shouldn’t be limited to my blindness.

I thought certain topics were blindness related and then there was everything else…

One in 5 people have a disability. Blind people participate in every aspect of life.
Politics, Art, culture, sex.

Me producing and hosting means I can bring a blindness perspective. It doesn’t mean I have to, but there’s no real reason I can’t or shouldn’t.

It’s a part of me and therefore a part of the things I do.

It’s not all of me but a part. I mean, I’ve been blind now for 30 percent of my life.

The name may not reflect it out right, but this is a disability podcast. It’s a blind podcast. It’s everything that I am. It’s Black, it’s Hip-Hop! Those who know can hear it.

It just is because it’s me and it’s my thing!

Audio: It’s My Thing, EPMD mixed into 7 Minutes of Funk…

I don’t consciously recognize my anniversary every year. If it makes itself present, cool! I acknowledge it and personally reflect. Would I like a cake and full celebration? Who wouldn’t like cake?

But I want this celebration to not be mine alone.
I’m thinking of those going through something similar.

For many, the idea of becoming blind is worse than death. That’s not hyperbole.
Different polls have shown this to be true for many.
I’m alive and kicking so I guess I can’t truly make the comparison.

I know not everyone consider celebrating 15 years of being Blind…

Marlett:

If I had to be honest, that’s not how I looked at it. Although I tell you, I remember the prayer that I had. I don’t care what happens, just don’t take him from me. I’m going to start crying. Just don’t take him from me.

[TR in conversation with Marlett:]

Mmm! That’s cool… that’s cool!

Marlett:

I just remembered that in that moment. It came back to me.

[TR in conversation with Marlett:]
Thank you baby, I appreciate that! Nice job!

Marlett:

Thank you!

TR:

This is a celebration of adjustments, acceptance , love and life!

[TR in conversation with Marlett:]
Instead of being in the cold basement researching. If 2003, 2004 there were a podcast called Reid My Mind Radio and you had a fly dude kicking’ the ballistics… laughs… No seriously, if there were a podcast for you to listen to would you have liked to hear from other people on a podcast?

Marlett:

Absolutely! I was, I was hungry…

[TR in conversation with Marlett:]
I think that was too, that’s too sexy Marlett. You can’t …

Marlett:

I didn’t try to be sexy…

[TR in conversation with Marlett:]

I know but you can’t say hungry. there’s no way I can put that on the air like that. You got to explain it again.

Marlett:

I was looking for something, anything…

[TR in conversation with Marlett:]

Mmm! There you go again. You see, you’re making it sexy. Stop . Just say it without being sexy.

Marlett:

I was looking for answers and there were none. There was no one there to… I felt like to guide me through this journey.

[TR in conversation with Marlett:]

Long pause…

I’ma guide you through this journey! Laughs… fade out.

TR:
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.

Another way to show your love if you like what you hear…

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,
… TR in unison with Marlett:
that’s R to the E I D like my last name!

Peace!

Hide the transcript

Higher with Red Szell – 2018 Holman Prize Winner

Wednesday, October 24th, 2018

This episode concludes our look at the 2018 Holman Prize recipients. In order to do so we travel across the Atlantic to London. Well virtually via Skype.

Red Szell sitting on steps
We meet Red Szell, the host of RNIB’s Read ON. Red is an Extreme Sport athlete and Holman Prize winner. We hear about his ambition, his journey through vision loss and more.

Subscribe to the podcast and make sure you don’t miss our upcoming three part series featuring the 2017 Holman Prize winners. The podcast!

Listen

Resources

Transcript

Show the transcript

Audio: Vocal crescendo from opening of “White Lines” Grand Master Flash & The Furious Five

TR:

Greetings and welcome back to another episode of Reid My Mind Radio! Let’s go!

Audio: Stevie Wonder Higher Ground
If you’re here for the first time, allow me to get you up to speed.

My name is T.Reid and thanks for stopping by. This podcast is my space to share stories and profiles around blindness & disability. Occasionally I produce stories around my own vision loss experience as an adult.

You joined the podcast in time to catch the third and final episode featuring all three 2018 Holman Prize winners.

I strongly encourage you to not only go back and listen to the other two episodes from 2018, but you should really go back and listen to the 2017 winners as well.

If you’re not familiar with the Holman Prize, no problem! Get comfortable and allow me to introduce you. But first we have one rule here. I don’t start without my intro music!

Audio: Reid My Mind Intro Music

TR:

The San Francisco Lighthouse for the second year in a row, awarded a $25,000 Holman Prize to each of three individuals who in their own way demonstrate the adventurous spirit of James Holman.

All applicants had to create a 90 second video describing their ambition and how they would use the money.
A team of judges all of whom are blind reviewed each video and eventually selected three winners.

Born in 1786 James Holman a veteran of the British Royal Navy became blind at 25 years old after an illness.

After studying medicine and literature he became an adventurer, author and social observer who circumnavigated the globe.

Undertaking a series of solo journeys that were unprecedented visiting all inhabited continents.

our final 2018 Holman prize winner is Red Szell.

RS:
I work for the Royal National Institute for the Blind, in the UK. I present a radio show called “Read On” which is all about books and reading.

TR:
Careful now. If you’re imagining the stereotypical book worm, try again.

RS:

I’d become a really keen rock climber in my teens. And I was good at it. Rode a bicycle around everywhere, did a lot of sports, cross country running, a bit of Cricket. I was a keen outdoorsy kind of person.

TR:

Red, a published author, is an accomplished extreme sports athlete.

If you’re not sure as to what makes one an extreme sport athlete well, you’re not the only one. There’s some question about what makes a sport considered extreme.

Wikipedia defines extreme sports as;
“a competitive (comparison or self-evaluative) activity within which the participant is subjected to natural or unusual physical and mental challenges such as speed, height, depth or natural forces and where fast and accurate cognitive perceptual processing may be required for a successful outcome”

Since 19 years old, “fast and accurate cognitive perceptual processing presents a challenge for Red.

RS:

I was told, “You’ll be blind by the age of 30.” Just like that.

I’ve got Retinitis Pigmentosa which is a degenerative disease of the retinas.

I basically went into a sulk to be honest I was at University so the beer was cheap (laughs) I just went into a bit of a sulk. It was shock. And it took quite a long time to get over it.

TR:
About 20 years according to Red.

But it wasn’t as though he was sitting around.

RS:
I was working as a journalist for a bit. I gave up work to look after my two daughters as soon as the elder one was born, so I was a house husband for 16 years.

I wrote a couple of books. A detective book and I always kept fit but it was kind of like solitary activities like swimming up and down the disabled lane in British swimming pools or going to the gym or doing Pilates or Yoga

I really missed the kind of camaraderie that you get from either being part of a team or doing an activity where you’re working closely with a partner like climbing.

TR:

Isolation

That sense of isolation can be quite common among people who are blind.

RS:

but then my elder daughter had her 9th birthday party at a local indoor climbing wall and whilst all the other parents were ogling the buff bodied instructors I was just checking out the bumps and curves on these beautiful molded climbing walls going I want to get my hands on that and I want to start climbing again. And that itch that I’d been wanting to scratch for two decades just suddenly seemed possible again. I thought well I can get back out and climb again safely.

TR:

When Red was first diagnosed with RP climbing walls weren’t an option. You had to do it the old fashion way, find a big rock and start climbing.

Early indoor rock climbing facilities weren’t of interest to Red as they weren’t very challenging.

RS:

The climbing wall that I went to for my daughter’s 9th birthday party had these 18 meter high walls and they were over hanging and challenging. It was just like being back outdoors again and I just… it just immediately hit my adrenaline button.

TR:

When that adrenaline gets going, you don’t want to keep it bottled up.

RS:
For a long time I was very good in being the happy blind person … well doesn’t Red take this well. Concealing inside that I was really pissed off. I don’t know if I can say that on your show…

[TR in conversation with RS]
You can say anything man!

RS:
Laughs… ok!

And actually like anything that you bottle up, it tends to go off. It tends to go sour. Actually what I learned though getting active in group activities again is a lot of it because you have to externalize it, you actually let off a lot of steam as well. It’s part of the process.

TR:

With the combination of adrenaline and access all Red required was action.

RS:

After my daughter’s 9th birthday at the local rock climbing center I turned up a little bit sheepishly with my white cane in my hand and said look I used to be a pretty decent rock climber. I know I’m blind but would you give me lessons and my instructor Trevor said yeh, why wouldn’t I. And I went what really and … I’m not going to discriminate against you just because your blind you said that you used to love climbing so do I.

TR:

Right there! that’s where Red and his climbing instructor Trevor found common ground. As we’ll see that’s an important message Red hopes to share with others. Proving inclusion and access is of benefit to all.

RS:

It was great. He gave me a great accolade after the third lesson that we had. Actually instructing me made him a better teacher because he had to think outside the sighted box. And that was great.

As soon as I got my strength back , my climbing strength back, I was actually making pretty good progress and it felt really good to improve doing something physical rather than having a degenerative physical disability and feeling that things were getting worse day by day. I was getting stronger and better at something day by day and it felt like taking one back for the good guys to be honest.

TR:
Feeling robbed by vision loss can lead to self-doubt.

RS:
I’d given up originally because if I couldn’t trust my eye sight how could I expect other people to trust my judgement, but actually through indoor climbing I re-discovered that passion but also that ability to control risk, be in charge of my own destiny and communicate. And I think that’s the thing that I get from rock climbing. And also from tandem bike riding and swimming. If you’re doing one of those activities with a buddy then it’s about communication. If your buddy is willing to help you then it’s actually down to you to give them the correct type of communication so that the two of you can achieve as well as you can. And I think that was something. It took me a lot of time. it took me two decades to realize that.

TR:
Armed with this new perspective, Red unknowingly or maybe subconsciously, began the process of ascending towards his goals.
Following a climbing workout with his trainer, Red mentioned one of his pre vision loss climbing goals.

RS:
And then one fateful day, whilst Trevor, my instructor was waxing lyrical about his favorite mountain side, I laid gasping on the ground having just overcome a tricky hanging problem, I let slip this dream that I had since I was about 12 years old of climbing something called the Old Man of Hoy.

TR:

The Old Man of Hoy is a sea stack off the coast of Scotland.

Sea Stacks also referred to as just a stack is a geological landform consisting of a steep and often vertical column or columns of rock in the sea near a coast, formed over time from erosion due to wind and water.

The Old Man of Hoy is considered one of the 10 most amazing stacks. it’s about 449 feet tall and only several hundred years old. Experts believe it may collapse soon.

Red became interested in climbing the stack after watching a documentary about Chris Bonington a mountaineer who climbed Everest.

RS:
He climbed everything . He is a Rock God.
that was the rock pinnacle that I kind of had emblazoned on my heart that I always wanted to climb. I said that to Trevor and Trevor went ok, I’ve climbed that. Well you know, with a bit of work you could probably do it. You know, you’re a good climber, you could probably do it. And that was it, it started itching … I started to go I got to do this. By then I got a climbing partner and I mentioned it to him and this dream kind of became a target because my climbing partner is quite pushy and so is Trevor.

TR:

Audio: From 2012 Olympics Opening
“Welcome to London”

Encouraged by the athletes competing in the 2012 London Paralympics taking, Red began taking steps to accomplish his long time goal.

RS:

That summer of London 2012 was the time that I started thinking this is possible. Then at a slightly drunken Christmas party at the end of 2012 my climbing partner was just ribbing me going ” When are you going to do this , when are you going to do this?” I just said Let’s do it next summer.

[TR in conversation with RS]
Who says alcohol isn’t good for something, huh?

Laughs with RS

RS:
Alcohol makes the plans.

TR:
Maybe, but executing them can be sobering.

Red dropped a bit of extra weight and in 2013 became the first blind man to climb the old man of hoy.

RS:
They made a film of it which was broadcast on the BBC over here.

and talk about taking one back for the good guys. That was one in the eye for Retinitis Pigmentosa, screw you, I can still do this.

TR:
After successfully climbing the Old Man of Hoy, in 2014 Red reached the pinnacle of another, the Old man of Storr.

His latest quest or in this case his Holman Ambition once again includes a sea stack.

Am Buachaille  , the rock that I’m going to go and climb is the third of the big Scottish sea stacks.

This is the most extreme. It’s miles away from anywhere. You have to cross Bog land. You have to abseil down cliffs you have to swim out to the base of it and then you got 90 minutes to climb it before the sea cuts you off and strands you over night. Not many sighted people take it on.

TR:
Yet Red along with his climbing partner Mathew will take it on. In a nutshell, here’s what they have to do.

Audio: Let There Be Rock, ACDC

RS:

Everything is against the clock.

Audio: Clock ticking…>

We have to setoff at the right time. Building in the fact that the land we are crossing is boggy. We will probably fall off a few times.

Audio: Bike fall and wheel spin

We’ll probably have to pull this heavyweight Cannondale tandem out of the bog, clean it up and move on. We’ll get punches, it’s a tough climb.

Then we’ve got to abseil down.

TR:
That’s a descent down the face of the cliff to reach their entry point into the water.

RS:

wait for the tide to get slack to go out to minimize the amount of swimming that we have to do and to be able to get on the platform at the bottom. Not a manmade platform but the bit that you can actually stand on to start the climb at the bottom of the sea stack.

We’ve got to get dressed again, get our equipment out. We’ve got to climb it and do that and get back down within 90 minutes otherwise the tide will cut us off.

TR:

You would think that when their finished climbing the sea stack that’s it, right? Wrong! They have to turn around and do the whole thing in reverse.

RS:
You got to swim it , bring your equipment there and back and then you got to be up the cliff and then cycling back before it gets dark. Not too much of a problem for me but it might be for my sighted climbing partner.

TR:

If you’re a sighted listener, feel free to join the blind and low vision listeners who are giggling at that last comment.

He may sound calm and make light of the situation but he takes it all quite seriously.
RS:

I don’t like to have a challenge that I can’t work out how to do but I came up with this plan about two years ago having sort of scoped it out beforehand. I just thought that’s impossible. A, that needs a lot of resources. B, it needs a lot of planning and C I’m not getting any younger. It’s a tough challenge.

TR:

Indeed. Just think about all of the variables at play. Communication, equipment

***Start Here***
RS:
We are talking about the United Kingdom that has a habit of pissing down rain just when you don’t need it to. Or high winds, We can’t climb in that. There’s a lot of planning.

There is a lot of stuff to go wrong and one of the things that you learn as a climber is that you minimize all the potential for things going wrong. So you draw up lists of what can go wrong and how you can stop it from going wrong. What you might break, equipment wise. What you can afford to bring with you as a spare.

We’ll do it. It’s a scary challenge even here 9months out it’s probably the toughest climbing challenge I’ll have ever done.

TR:

At first, I thought Red’s motivation was vengeance. as in revenging vision loss itself. Specifically, Retinitis Pigmentosa.
RS:

Includes audio reverb effect as in flashback…

it felt like taking one back for the good guys to be honest.
talk about taking one back for the good guys. That was one in the eye for Retinitis Pigmentosa

TR:

And so we’re clear, I’m not judging.

Maybe that is a motivator for some. Whatever gets you moving, right?
And you need momentum to reach your peak.

And along the way, motivations can change from personal to those that have a broader impact.

RS:

I think my diagnosis of blindness made me a little scared to go out of the door at times. It made me need to have a reason to go outdoors.
Other people’s
perception of blindness is that we are mobility impaired and maybe there’s a lot of activities that we shouldn’t do . My view of the world is that you go and kick the ass out of it and if you can find a way of doing that that gives you pleasure and has you playing with other people playing along with other people and doing stuff that you can they enjoy, blindness should be no barrier to that. Go out and find the thing that makes you tick and kick the ass out of it. Life is too short to sit there looking at what you lost rather than what you can still achieve.

I kind of wish that I’ve done a bit more in those years before I rediscovered climbing.

I don’t like what if’s and I don’t want other people to have what if’s. I want to spread the word that whether it’s Yoga, Pilates, climbing kayaking or just walking to your corner store and back every day, getting out and doing some physical activity makes you feel much better.

That’s what it’s all about for me.

TR:

Writing his own account of his 2013 climb of the Old man of Hoy in his book, The Blind Man of Hoy has given Red the chance to spread his message.

The Holman Prize will give him a chance to increase his visibility and reach a wider audience. Yes, he hopes to inspire other blind people, but it’s what he hopes the sighted family and friends can learn that I find intriguing.

RS:

I got a blind friend , maybe I should ask him if he wants to go swimming. Maybe I should see if we could rent a tandem and we could get outdoors
if just one person’s life is changed by showing what we still have as blind people in potential then my job is done. I’ know that I’ve made some difference already. I want to build on that success .

TR:

Changing perceptions isn’t easy. Red knows. Based on his own estimate it took him about 20 years to re-focus how he views his vision loss.

RS:

when I got to the full summit of the Old Man of Hoy and there’s this huge crack in the top of the sea stack as if a giant has taken a cleaver to it and split it down about 50 meters. I could feel the wind coming off the Atlantic and could sense the sun all over my face and I thought I’ve got there this is brilliant and then my climbing partner just went not yet mate , I went but this is still pretty cool, I’m just going to bask in this .

I thought my blindness has got me here. Without my blindness I would never have been climbing that rock. I would have been sitting in front of some computer somewhere doing some boring ass job earning money for the man and thinking I wish I carried on climbing. My blindness got me there. Without it I wouldn’t have achieved those pages in my story.

when I got this job working for the radio station my Dad actually turned around to me and he went you always wanted to be a radio journalist didn’t you . And I went yeh that’s what I wanted to do when I was in my teens. And he went and you’re doing it. You’re doing it about books. People are paying you to listen to audio books and interview authors. What’s not to like about that.

And I thought it’s a really funny round about world where it took 30 years and going blind for me to actually achieve two of my most dearly held dreams.

Whilst I’ll never feel truly grateful to Retinitis Pigmentosa I guess I’ve got to thank it for some of the opportunities it’s given me.

TR:
In fact, Red says it was his boss Yvonne at RNIB, the Royal National Institute for the Blind, who suggested he pursue the Holman Prize.
RS:

Royal National Institute for Blind people is celebrating its 150th anniversary this year. It supports people with sight loss. It gives help, advice and equipment to people with sight loss to help us lead as constructive a life as possible.

We have the most amazing talking books library which also has Braille and giant print copies of hundreds of thousands of books.

TR:
If you want to stay in touch with his progress, send congratulations or listen to his show…

RS:

You can find me at my website RedSzell.com where you’ll find all of my latest news. You can drop me an email if you want to and you can find Read On by looking up RNIBConnectRadio/ReadOn.

TR:
So there’s no confusion, he spells that R E A D. I know weird, right?

TR:

Red and I have a lot in common.

We’re both around the same age, actually I’m one year older than the young man.

Both losing our sight later in life.
Dad’s to two daughters.
We’re both interested in audio journalism.

But I guess there could only be one …

Audio: King of Rock, RunDMC.

Salute to Red Szell, Stacy Cervenka & Conchita Hernandez the 2018 Holman Prize winners. I’m sure the Reid My Mind Radio family joins me in congratulating you all and agree that we’re looking forward to hearing more about your journey and success.

Shot out to the San Francisco Lighthouse for their leadership and sponsorship of the Holman Prize.

I think it’s worth recognizing the amount of time and thought put into this project.

It’s something that could easily be done wrong.

The diversity of the winners and their ambitions indicates to me at least that it’s really about encouragement, visibility and the promotion of positive examples of what is possible for people who are blind and low vision and in general people with disabilities.

Three things that I hope are also associated with this podcast.

Next time, we’re going back to catch up with 2017 Holman Prize winners and Reid My Mind Radio Alumni…

Penny Melville Brown of Baking Blind

Ahmet Ustenel AKA The Blind Captain

Ojok Simon, The Bee Keeper & Honey Farmer!

We’ll hear about what worked with their plans and what sort of adjustments were required. And of course lessons learned.

If there’s one lesson I want Reid My Mind Radio listeners to learn; that would be , how to subscribe to this podcast.

Apple Podcast, Google Play, Sound Cloud, Stitcher or Tune In Radio. Of course, whatever podcast app you use, you can find it there by searching for Reid My Mind Radio. Just remember, that’s R to the E I D!

Each episode lives on the blog, ReidMyMind.com where I include links to any resources and a transcript.

You know, I may not have been crowned King of Rock, but you know what they say…

RS:
He’s a Rock God!

Peace!

Hide the transcript

Reid My Mind Radio: On Black Panther Audio Description – Race, Selection & Time

Wednesday, May 2nd, 2018

More on Black Panther? Well, yes, sort of! It’s really a good movie that raises some issues about Audio Description that need to be a part of AD conversations. In fact, these issues go further and touch on so called race and disability. I thought I’d begin here… Plus some suggestions as to how we can enhance the Audio Description improving the movie experience for Blind movie goers.

Subscribe to the podcast via Apple, Google Play, Sound Cloud, Stitcher, Tune In Radio

Listen

Transcript

Show the transcript

TR:

What’s up RMMFamily!

It’s been a while since I felt the need to share some thoughts on my mind.

So here I go!

What you’re hearing is a scene from this year’s record breaking super hero movie from Marvel Studios, Black Panther.

I enjoy a super hero movie like everyone else , I’m just not one to get all fan boy about it before actually seeing the movie. I do enjoy the build up to the premier and the anticipation from those more passionate about the character and genre.

Black panther was a little different for me. It was pretty difficult to open my Twitter app and not read something about the movie. Whether television, radio or podcasts and all other media, Black Panther was a trending topic.

We planned to see the movie as a family either during the first week or soon thereafter. Unfortunately, my back problems forced us to alter our
plans.

Audio: “Doctor Says I need a backiotomy!” Dave Chappelle, “Half Baked”

Over the past few years, as Audio Description has increasingly been included in major movie releases (at least most that I’ve been interested in seeing) I find myself assuming that movies will be accessible for me.

Rather than questioning if it’s going to be included, Marvel’s Black Panther led me to be more concerned with the quality of the Audio Description or AD. To some extent we can probably consider that progress. However, improving the quality is a major part of moving to an experience closer to that of a sighted movie viewer.

My issues with Black Panther’s Audio Description begin with their choice of narrator and those scenes and elements included in the description. I propose we should think about description outside of the limitations set forward by movie’s start and end time.

The AD included in Black Panther was in my opinion lacking from the beginning.

One of the reasons I was excited to see this movie is because of the predominantly Black cast. The movie mostly takes place in the fictional African nation of Wakonda. This relatively small nation appearing to the outside world to be underdeveloped was actually the most technically advanced nation on the planet. Home to vibranium which absorbs sound waves and other vibrations, including kinetic energy making it the strongest metal.

Now, yes, this is a fictional movie, but for African Americans it represented the chance to see characters that display the people and culture in a positive light on screen. Finally getting a break from the roles of thugs, domestic, the white persons best friend who’s only existence appears to be to aid the friend and the sassy Black woman. And when it comes to movies taking place in the future – we’re more than often just written out completely.

Hollywood just has a problem with representation in general outside of your able bodied white male.

For many Black Panther lived up to the hype and fulfilled the void of not seeing positive representations of people of African descent. The vibe of this movie was unapologetically Black.

For those of us watching with Audio Description, well the vibe wasn’t the same. Trying to remain in the dream nation of Wakanda was impossible when we’re being shaken awake by the narrator who by all accounts was a British White man.

Does this mean, white people shouldn’t be allowed to narrate movies with predominantly Black casts? It’s really probably more like the reverse, should narrators of color be able to narrate stories outside of their culture. Of course.

However, when the movie is so deeply associated with a culture – I think it makes sense to extend that to the audio description.

Concise and informative description is even more imperative in fictional movies such as Black Panther. Often, the technology, architecture and possibly fashion is unique to the fictional location.

So much of these things were left out of the movie, forcing blind viewers to ask for input from others. For example, the description of the city itself being described something like a mix between modern and ancient… My view of ancient or modern may be different from another person’s. It seems too subjective.
In fact, someone who has never seen modern may not get much imagery at all from that statement.

There were several other things that I learned of only from having conversations with friends and family following the movie. Some of these things I thought really helped tell the story of the people and culture of Wakanda hence the story of Black Panther.

Now maybe this seems weird to you, but I was annoyed that a decision was made to not read the credits. This is especially relevant in a Marvel movie. Those familiar with these movies know not to leave until the credits are done because Marvel includes a scene or two that’s relevant to the telling of the next story in the series – somewhat of a preview or sneak peek. I personally enjoy hearing the names of the actors in the cast and sometimes enjoy hearing the many names of those involved in the production. Without this access I’m forced to ask who ever I’m with to read or look for a certain cast member. That usually feels like too much to ask someone.

— Close —

Looking at movie making as a process you can sort of neatly put things into categories or phases.

This includes everything from the idea to the creation including pre production to post production. Writing, casting, filming, editing and distribution.

Right now the Audio Description as far as I can tell takes place right before that last distribution phase.

Movie studios contract with companies specializing in Audio Description. Many of these companies also specialize in closed captioning as well and possibly language translations.

When we talk about access to technology; software, hardware, apps & websites the goal is access from the design phase. Shouldn’t we want the same from Audio Description?

Movies, televisions programs, documentaries, theater plays..any visual medium are really works of art. Someone has a vision. With movies and television , it’s the Director who is in charge of what the consumer sees. He/She is setting up and or approving camera placement, lighting and everything involved with the final images. They’re telling the story. That’s what the consumer sees.

Audio Description being written by a third party is now including a new vision. One that to my knowledge doesn’t include any real consultation with the Director.

There are certain scenes that are designed and purposely shot in a specific way to evoke an emotion, convey some sort of meaning.

With the limitations currently in place in creating an Audio description track for a movie, most notably making use of the silent time in between the dialog, things are going to get left out. The choices made by the AD production companies may not be the same as those of the Director.

Are we really limited to just the hour and a half or two hours from the movie’s start to end?

I’ve attended live plays which begin the description early.

Blind users were invited to the theater 45 minutes to an hour earlier than the general audience. This gave us time in some instances to explore the stage and set, costumers and even become familiar with the voices of the different actors.

Currently, Audio Description doesn’t begin until the movie starts. It seems like a track could be created and either streamed prior to the movie and even be made available for listening before arriving to the theater. In the case of Black Panther a more comprehensive description of the country could have been written including their technology and more without spoiling the movie.

It could also help to have some audio streaming through the device to assure its working before the movie begins. All too often when going to a movie with my wife, as the movie began I would realize there was no description coming through the headphones. My wife would run out of the theater to find a manager in order to get it fixed.

Going back to my comparison with access to technology, from an advocacy perspective many of us have written directly to developers of software, websites and apps. At the very least, these individuals become informed about the need for access. I often wonder if director’s, screen writers, producers and others in the early Pre production phase are aware of Audio Description.

In 2016 I had the opportunity to speak with Peter Middleton, one of the directors of a film featured on Reid My Mind Radio; Notes on Blindness. The film which is sort of a documentary with reenactments of actual events lip synced to the recordings of real audio captured by Theologian, John Hull using a cassette recorder. Mr. Hull kept very detailed recordings of his experience and thoughts as his vision faded beginning in 1983

There were multiple versions of the film released including one with Audio Description and the other with what they referred to as enhanced audio. This was an experiment of sorts that used additional dialog and more audio as queues to help viewers who are blind have a more inclusive experience of the film without the need for Audio Description or negatively impacting the experience for sighted viewers.

Creative people when facing a challenge step up and figure out ways to best communicate their vision.

From everything I’ve read and watched online about Ryan Coogler, the Director of Black Panther, I think he would have been the best person to write or at least lead the process of creating AD for the movie. He was involved in every aspect of this movie from choosing an African dialect from the South African region to use as the language spoken in the fictional country of Wakanda to the look and feel of their technical innovations.

Should consumers of AD be pushing for a change in where the description takes place in the movie life-cycle?

Should AD companies be teaming up with writers in an earlier phase along the production timeline?

Should movie writers strive to include more descriptive dialog that enables a blind movie goer to independently enjoy the movie?

Could directors and others like sound designers take blind movie goers into consideration and use a combination of all their tools to better improve the movie experience?

Could consumers have more control of their AD by using apps like Actiview (also profiled on Reid My Mind Radio) – helping to eliminate the problems of uninformed theater workers who are now responsible for making sure they give out and properly configure the right device.

I’m hoping those in the Audio Description field in combination with blind consumers, are thinking about these things that I believe will greatly improve the Audio Description experience.

I’m very appreciative of the improvements made to enable access across all media. I was a pretty big movie watcher before losing my sight and I really enjoy continuing this as part of my life. It helps maintain relationships, start new ones through conversations around a shared experience and if it’s a good movie, it allows for new thoughts or even escape and just good entertainment. And there’s nothing wrong with that.

On the subject of thought provoking content or entertainment, you should subscribe to this podcast hopefully for at least one of those things.

It’s easy to do using any podcast app. We’re on Apple Podcast, Google Play, Sound Cloud, Stitcher, Tune In Radio and you can always head over to ReidMyMind.com that’s R E I D, where you can listen, read the transcript and access episode resources.

I’m T.Reid and I thank you for listening!

Peace!

Hide the transcript