Posts Tagged ‘Adjustment’

The Making of Blind Leaders

Wednesday, October 23rd, 2019

Are leaders born or are they made?

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

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

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

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TR:

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

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

Audio: Reid My Mind radio Intro Theme Music

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

TR:

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

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

MA:

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

TR:

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

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

MA:

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

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

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

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

TR:

Megan was creative in hiding her blindness.

MA:

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

TR:

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

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

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

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

MA:

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

[TR in conversation with MA:]

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

MA:

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

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

[TR in conversation with MA:]

Well eventually you did.

MA:

It was a long time after the waiting tables thing.

TR:

It was after graduating college with a degree in Sociology.

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

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

MA:

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

TR:

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

MA:

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

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

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

TR& MA laugh…

MA:

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

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

TR:

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

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

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

MA:

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

TR:

Part of that last initiative is the Blind Leaders Development Program

MA:

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

TR:

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

MA:

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

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

[TR in conversation with MA:]

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

MA:

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

[TR in conversation with MA:]

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

MA:

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

TR:

Sounds like you or someone you know?

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

MA:

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

TR:

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

MA:

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

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

TR:

Here’s how it will work.

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

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

MA:

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

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

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

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

MA:

It’s both eye opening and affirming.

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

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

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

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

TR:

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

Mentors will also need to complete an application.

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

MA:

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

TR:

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

MA:

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

TR:

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

MA:

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

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

MA:

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

TR:

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

What about those struggling to gain employment?

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

MA:

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

TR:

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

The application process closes on November 1, 2019.

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

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

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

MA:

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

TR:

A big shout out to Megan Aragon.

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

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

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

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

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

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

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

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

We have past episodes that deal with this subject specifically.

But so much of the employment process is universal.

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

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

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

Subscribe or follow the podcast where ever you listen;

Apple, Spotify, Google or your favorite podcast app.

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

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

Audio: Reid My Mind Radio Outro

Peace!

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Hopeless to Thriving Blind

Wednesday, September 25th, 2019

Kristin Smedley on stage
When Kristin Smedley was told her first son was Blind the doctor said there was no hope. Hear about her journey which took her from a lack of information to writing Thriving Blind: Stories of Real People Succeeding Without Sight.

Hear what sparked her journey, lessons for others impacted by vision loss and how you can see her at a live event geared to those adjusting to Blindness.

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Resources

Transcript

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TR:

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

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

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

Audio: Reid My Mind Radio Intro

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

TR:

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

KS:

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

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

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

KS:

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

TR:

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

KS:

All I knew about blindness was really nothing at all.

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

TR:

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

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

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

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

The history?

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

KS:

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

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

KS:

Yeh!

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

KS:

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

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

Today, Kristin is in a much different place.

[TR in conversation with KS:]

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

KS:
(Laughs) I’m excited!

TR:

And so is PCB.

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

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

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

KS:

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

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

TR:

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

Also important, attitude.

KS:

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

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

TR:

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

KS:

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

[TR in conversation with KS:]

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

KS:

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

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

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

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

TR:

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

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

KS:

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

TR:

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

KS:

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

TR:

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

KS:

Isn’t this the best day ever!

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

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

TR:

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

KS:

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

TR:

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

KS:

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

TR:

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

But now she has a new way of handling them.

KS:

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

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

TR:

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

KS:

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

[TR in conversation with KS:]

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

TR:

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

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

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

KS:

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

[TR in conversation with KS:]

Are you reading the audio book?

KS:

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

# Close

TR:

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

KS:

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

[TR in conversation with KS:]

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

KS:

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

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

TR & KS laugh…

TR:

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

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

Audio: Reid My Mind Radio Outro

Peace!

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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!

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Transcript

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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

Up and Moving Again

Wednesday, March 13th, 2019

William at the finish line of the Prickly Pear

Meet William Greer, Director of the Cinema Touching Disability Film Festival. Hear his story of finding his passions after Traumatic Brain Injury (TBI) and vision loss.

We discuss TBI, Ultra Marathon running, disability representation in films and that time he ran a certain Boston Marathon with NPR’s Wait Wait Don’t Tell Me Host Peter Sagal.

This episode includes an original piece produced by Tilly Jones.

Listen

Transcript

Show the transcript

TR:

Welcome back to another episode of Reid My Mind Radio.
I’m your host and producer, T. Reid.

Today I’m speaking with William Greer. He’s the Director of the Cinema Touching Disability Film Festival. In this episode we’re talking;
* multiple disabilities,
* disability arts
* marathon running.

That’s next up! On Reid My Mind Radio. Let’s go!

Audio: Reid My Mind Radio Theme Music

WG:

I was riding a bicycle, not wearing a helmet.

TR:

This is William Greer.

WG:

And I went in the middle of the street when I shouldn’t have. Nothing between me and the pavement. My brain was exposed to light air and dirt. I’m told those are the three worst things that could come in touch with the brain.

I was in intensive care for probably three or four weeks. I’m told that there were a couple of times that I was legally dead while I was still in ICU. it took a lot of therapy and patience just to get me out of the hospital and back in school.

TR:

William was only 17 and still in high school at the time of the accident which caused a Traumatic Brain Injury (TBI).
In William’s case, the effects include a reduced ability to understand and learn math, facial paralysis…

WG:

I have poor short term memory, my balance is not as good as it used to be. The most dramatic result is the vision loss.

TR:

In order to return to school, Will would have to adjust.

WG:

Figured out new ways to take notes. Learned that I had to listen to a book rather than visually read it. graduated high school got in to Kenyon College and now I’m working full time.

TR:

In 2003, unable to find full time employment, William was volunteering for the Coalition for Texans with Disabilities when he had an idea.

WG:

Oh, we can raise money and awareness by showing films that have good representation of disability.

TR:

In 2004William produced the first festival known as Cinema Touching Disability. It began as a one day event.

WG:

We would pick out films about people who have disabilities. Sometimes they were documentaries, sometimes it was fiction film.

It started off as one art form and it sort of grown into others.

TR:

Among those included were a disability photography competition and a live re-creation of a piece of art originally produced in the documentary Getting UP.: The TEMPT One Story

Diagnosed with Lou Gehrig’s disease, almost completely paralyzed, a graffiti artist regains his voice through technology that reads
the movement of his eyes and enables him to create art and write once again.

Audio: “Marciac Master” By Tilly Jones

WG:

This year one of the people who entered my competition is someone from Australia with Cerebral Palsy and Asperger’s and a couple of other disabilities.

She plays 5 musical instruments and writes her symphonies. So I asked her to write an introductory piece for our festival. She did that. So we got the funds together and brought her over here. We had her playing music with other musicians and playing music during the intermission.

## TR:

The music you are hearing is the composition William referred to. The young musicians name is Tilly Jones.

As the years progressed the duration of the festival increased from one day to up to five days one year.

The festival like art itself serves multiple purposes that go beyond entertainment. Like representation.

WG:

We need good representation. Non stereotypical representations wherever we can get it. Whether it’s advertisements like commercials on TV. In paper representations; signs or in the ways that people with disabilities are treated in restaurants, libraries or movie theaters. When the community as a whole sees positive representation of disability it can only improve outcome and help people learn more about it.

[TR in conversation with WG:]

Do you have any favorite films about people with disabilities ? Anything that you would recommend?

Audio for each of the movies is included.

WG:

The two best disability films I’ve ever seen are;
The Best Years of Our Lives.” That was made in 1946One of the stars of it, Harold Russel, actually lost both of his hands in a training accident for World War II.

“Duet for One” which is about a music teacher who has I think its Multiple Sclerosis so she has to stop playing the violin.

Now those are the absolute best. No question about it. My favorites include “The Crash Reel” which is about a snowboarder who has Traumatic Brain Injury while trying out for the Olympics. It’s about his recovery and his desire to get back into competitive snowboarding and his family saying please don’t.

There’s “Right Footed” which is about the only armless pilot in the world. There’s lots of others that I really like

[TR in conversation with WG:]
What’s a (laughs) what’s on the bottom of your list?

WG:
There are so many of them. I really hated Memento. I think that that was a horrible representation of brain injury.

Don’t like Forrest Gump obviously.

Oh, Al Pacino was in it…

[TR in conversation with WG:]

Laughs… Scent of a Woman? Laughs…

WG:
Scent of a Woman, . I really hated that film.

Audio: sounds of a runner’s feet hitting the pavement…

TR:

William says he himself isn’t much of an artist. Growing up with horses, she’s definitely more of the outdoors type. He cycled over 30 miles at a time. I figure we can assume he’s athletic?

WG:
Yes.

I’d run when I was younger. I was on the cross country and track team when I was a Freshman in High School but there were lots of things they didn’t teach you like the importance of stretching, good diet and running wound up being incredibly painful . So after my Freshman year I didn’t start running again until 2005.

[TR in conversation with WG:]

And what made you do that?

WG:
Well, just looking for a good way to stay in shape and keep myself entertained.

In terms of sports that you can do as a Visually Impaired person on your own there aren’t really a lot of them and running seems to be like the best way to go.

[TR in conversation with WG:]

A lot of people wouldn’t necessarily think that because you’re talking about outdoor running.

TR:
As we know there are degrees of vision loss. William has some usable vision that enables him to manage independent running under specific circumstances.

WG:

I can run in a straight line and I see well enough to avoid obstacles so as long as I’m going on a familiar path I don’t have a problem running.

When I’m in marathons I prefer to run with a sighted guide just so I don’t take a wrong turn.

TR:

Training with a sighted guide prior to a race is optimal. It allows the two runners to become used to the preferred guiding method.

WG:

The sighted guide enables me to concentrate on running.

TR:

William has the guide run in front providing directions about obstacles and other information like approaching hills and changes in the terrain.

WG:

Even picking up water or Gatorade from the water stops.

Todd, the person who guided me on my first 30 and 50 Ultra Marathon, we ran two or three times together.

And I’m glad we did that because an Ultra is a heck of a lot different from a marathon.

[TR in conversation with WG:]

I thought a marathon was 26 miles. You said a 30 mile and then a 50 mile?

WG:

A marathon is 26.2 miles. An ultra is anything longer than that. Most of them are on trails. the trick with an ultra is a slower pace, you also got to avoid creeks, roots, rocks, holes in the trail. there are times when you have to walk because the hill is too steep or unsafe going either uphill or downhill. It’s not the same as a marathon.

TR:

In your standard marathon runners consume water and energy gels. In an ultra, you have to consume more carbohydrates including food like nuts, bagels, burritos, pretzels and chips. The body loses a lot of salt so that needs to be replenished.

WG:

In an ultra-marathon the runners carry their own water. You’ve got to be hydrating all of the time. You either carry something like a belt that can hold 5 or 6 bottles of water, a backpack that can hold a couple of big bottles of water or something that they call a camelback which is just a pouch that you fill with water and you can drink from the whole time.

In the ultras you can stop refill on water, have a bit of food maybe stretch a little bit if you need to and then go on your way.

[TR in conversation with WG:]

Wow! Fifty and one hundred mile, you’re doing that all in one day? Laughs…

WG:

Laughs… With a hundred mile it is one day!

TR:

William has 20 marathons under his belt. In fact, since he began tracking his runs, he’s logged in over 9,000 miles.

In 2013 Williams ran the Boston Marathon with his guide, NPR’s Wait Wait Don’t Tell Me host Peter Sagal.

Audio: 2013 Boston Marathon Bombing…

WG:

We finished 5 minutes before the first bomb.

That was luck as much as running skill.

## TR:

Such incidents are rare, but there are risks.

Running in his second Austin marathon without a guide, there was a change in the route and William was unaware of a natural depression in the street’s pavement.
WG:

It went down about a foot or so. I wound up going head over heels as a result of that.

It didn’t happen to the other runner because they could see it and avoid it. And that’s just one of those things where it hurts a little bit but you just got to stand up and start moving again.

TR:

Sound advice. For more than running!

If you’ve been considering starting your own personal running program, William has some advice for that too.

WG:

Buy yourself a good pair of shoes. If you can go to a store that specializes in running. You don’t have to spend 200 to 300 on running shoes especially if you’re just starting. If you got the wrong shoes it’s going to be painful. Don’t worry about having to run fast. Just run at the speed that you’re comfortable with and run on a route that you know.

The best piece of advice that I ever heard about running is if it hurts you’re doing it wrong. Just run so that it feels good.

[TR in conversation with WG:]

I think that might be a foreign concept to a lot of people… laughs…

WG:

Laughs…

[TR in conversation with WG:]

The average person who doesn’t run there like probably saying, why? Laughs… Why do you do this man?

WG:

You know that’s … Pause…

Because I can’t imagine not running.

There’s something about it that really feels good. And makes me feel just incredibly good right and centered. It’s a bit like an addiction. And I find that I’m always wanting to increase the distance I’m running or increase the difficulty of the race or find a different kind of challenge to add into it.

The next marathon I’m going to be in I’ll be running a 10K on Saturday and a 50K on Sunday. So yes a 50 K is challenging let’s make it extra challenging by running a 6 mile race the day before it.

Yes you’re soar but it’s a soreness that feels good.

[TR in conversation with WG:]

Have you found anything that can possibly match the feeling that you get from running? Laughing… Yoga? A good movie… laughing…

TR:

William says he gets a lot of fulfillment out of organizing the film festival but nothing compares to running.

In addition to that two day event William is planning on running a marathon in December 2019.; 100 mile Ultra

The next Cinema Touching Disability Film Festival is scheduled for October 25 & 26, 2019 in Austin Texas. For more information you can visit CTDFilmFest.org

It may not sound like it but I used to run years ago and actually enjoyed it. I never did a marathon but I can grasp why someone would find it addicting.

There’s a freedom that comes with running. Especially trails. You’re forced to be present – dodging fallen tree stumps and low hanging branches, jumping creeks and being aware of nature.

Being Blind or visually impaired, so much of the daily grind is about people and aspects of society concentrating on what they think you can’t do.

Running and other such activities can for some remind and reinforce a feeling of independence. Athletics and sports provide the opportunity to excel based on strengths while continuously improving weaknesses. Plus progress is measurable.

Unlike my addiction to chocolate!

Big shout out to Mr. William Greer. A special shout out to Cheryl Green who suggested Will to the podcast.

Cheryl’s a film maker who focuses on disability identity culture and justice. She’s an advocate for accessible media. And you’re going to meet her on an upcoming episode.

You too can be a part of the show; Want to suggest a guest or topic, comment on an episode… 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.

if you mainly listen to the podcast via Sound Cloud I’m hoping you will continue to listen but I am moving away from that platform. I’ve been tolerating their interface in order to avoid the move to another service.

I may decide to keep one or two episodes available, but the best method for staying caught up is to
subscribe via Apple Podcast, Spotify and Google Podcast. All other platforms will be updated as well.

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

Don’t forget, you can always find me at ReidMyMind.com.

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

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!

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