Posts Tagged ‘Blind’

Because We Are Captivating

Wednesday, October 9th, 2019

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

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TR:

Welcome back to Reid My Mind Radio!

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

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

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

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

Audio: Reid My Mind Radio Intro

[TR in conversation with SM:]

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

SM:

Laughing

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

TR:

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

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

SM:

Captivating!

TR:

An online digital lifestyle magazine gearred to people with disabilities.

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

SM:

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

TR:

But there are also differences.

SM:

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

TR:

Eventually the ideas turned into Captivating.

SM:

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

TR:

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

Whatever it is, Steph’s flipping it!

SM:

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

TR:

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

SM:

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

[TR in conversation with SM:]

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

SM:

Oh my God yeah!

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

[TR in conversation with SM:]

Hmm.

SM:

You know?

[TR in conversation with SM:]
Yeah!

SM:

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

TR:

TR:

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

SM:

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

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

TR:

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

SM:

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

TR:

Steph’s earliest advocacy was as a mom.

SM:

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

TR:

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

SM:

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

TR:

Then there was advocacy from her perspective as a daughter.

SM:

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

TR:

First step!

SM:

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

TR:

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

SM:

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

TR:

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

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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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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Sparking Success After Vision Loss

Wednesday, September 11th, 2019

Blindness, Low Vision any degree of significant vision loss occurs for different reasons. It impacts people from all walks of life at various ages.
My guest today, Susan Lichtenfels, President of the Pennsylvania Council of the Blind (PCB) says; “None of our experiences are ever the same, but they’re similar.”

Looking at people adjusting to vision loss, it’s apparent there are also similarities in making that a success.

Hear all about SPARK Saturday, an event sponsored by the Pennsylvania Council of the Blind to light the fire in anyone impacted by vision loss. Plus a look at how PCB can help you attend.

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TR:

Welcome back to another episode of Reid My Mind Radio. My name is Thomas Reid. Not only am I producer & host of this podcast, but I’m the target audience, a person adjusting to becoming Blind as an adult.

While I’m no longer new to blindness, I do think I would have appreciated having a podcast like this one during those early years.

In some ways I did. I was fortunate to have other people with all degrees of vision loss in my life. People who are Blind, living productive lives on their terms.

We’re going to get into a bit of that and how it can be of help to you or someone you know right now adjusting to vision loss from low vision to total blindness.

First let me drop this on you like…

Audio from opening music (Wow!)

Audio: Reid My Mind Radio Intro Music

TR:

Early on in my adjustment I became involved in advocacy. It began locally and grew to state and national after helping to form a chapter of the Pennsylvania Council of the Blind or PCB in my county.

Attending my very first PCB state Conference & convention made a big impact on my life. It gave me the chance to meet people who both indirectly and directly taught me a lot about blindness. It was extremely important to my personal adjustment.

Today we’re going to take a look at some of what PCB has to offer those adjusting to, experiencing or impacted by blindness or vision loss; including an event that many of you may want to attend. Plus opportunities to help you do that.

Allow me to present a friend of mine to help guide you on this tour.

SL:

My name is Sue Lichtenfels and I am currently the President of PCB. But when I’m not wearing that hat I am a wife, I am an Advocate and I am a person with a disability, actually 2 disabilities. I am a mother of a soon to be 8 year old.

[TR in conversation with SL:]

8 years old already. Wow, I’ve known you for a while Sue.

Sl:

We started on the board at the same time. In 2007 we were elected and we started serving in 2008.

[TR in conversation with SL:]
And how long were you in PCB ?

Sl:

I only joined in 2005. We really are like right around the same… (laughs)

[TR in conversation with SL:]
Yeh! So was your first conference 2006 or 2005?

Sl:

My first conference as a member was 06.

[TR in conversation with SL:]
Yen, same with me!

TR:

We’re going to start with advocacy, but let me first be an advocate for this podcast.

Sue has agreed to come back on the podcast to share more of her story.

SL:

We’ll sit down and do another interview.

TR:

I’m just saying! It’s on the record now!

Self-advocacy is often a gateway to becoming an advocate for other. For Sue, it started in college.

SL:

No one’s there anymore to kind of be a buffer between you and your professors or the learning center that’s helping to adapt your materials in the format you can use.

#Goal Ball

TR:

While at the University of Pittsburg, Sue was introduced to the sport of Goal Ball which truly made an impression on her.

SL:

It’s a sport with three players on each team played on an indoor court and you kind of roll a ball the size of a basketball. It’s got bells in it and you roll it in a bowling motion and then you slide and use your body to block the ball from going beyond your team into the goal.

TR:

It may sound like just a game, but Sue grew up loving sports and always wanting to play and compete.

SL:

I was never allowed to. So when I found this sport, Goal Ball, I really , really loved it.

TR:

Sue became really good at the game. In fact, she played for the USA team in the World Championship in Canada.

SL:

And then I was in this car accident and lost the use of my legs.

TR:

This appears to be what really activated that inner advocate.

SL:

I had this opportunity to finally find a sport, find something I could be athletic and involved in so I wanted to do work and do advocacy get other kids that are mainstreamed the opportunity to be more involved in physical education and recreation.

TR:

Sue applied for and received a fellowship which enabled her to start a nonprofit.

SL:

Called Sports Vision, to create opportunities for children. I went out and spoke to Physical Education Teachers, IU teachers to advocate on behalf of getting children more involved in physical education.

[TR in conversation with SL:]
When you said that you weren’t allowed to was that a parental thing or was that a school thing where you weren’t allowed to participate in sports?

Sl:

I wasn’t allowed to participate in sports for fear that I would get hurt.

TR:

Children attending schools for the Blind had adaptive sports and recreational activities. Unfortunately, fear often caused children like Sue who were mainstreamed to be kept on the sidelines and excused from physical education and sports.

SL:

Fear was on the side of the parent who was afraid that their child was going to get hurt. The fear is also on the side of the district that doesn’t want to take a chance in getting sued because a child did get hurt.

[TR in conversation with SL:]
I got you, so it’s not like you had an advocate at school or at home kind of saying hey she wants to play sports, let her do it. So then you became that advocate in Sports Vision.

Sl:

Correct.

[TR in conversation with SL:]
Cool!

TR:

Also cool was when Sue brought her talent and persistence to the Pennsylvania Council of the Blind. Already familiar with running her own nonprofit and filling multiple roles, she took on many within the organization before her election to PCB President.

SL:

Fundraising, membership, awards, conference program and planning I’ve pretty much served on every committee or team within the organization.

Since 2010 I’ve been Editor of the PCB Advocate which is our quarterly newsletter. In 2007 I was elected to the board of PCB and been serving as a member of the board ever since.

# Challenges of Leading Membership Org.

Currently Sue is winding down the last months of her second and final term serving as PCB president.

Just the right time to ask her about the challenges of leading a member based advocacy organization.

First, challenges of the membership model itself.

SL:

Engagement.

When you’re a member based organization there is a micro way of thinking. You tend to gear your work towards the people that are in your organization. And we spend a lot of time offering ways to try and get our members more active when the reality of the situation is that our mission is to promote independence and opportunity for all who are Blind or visually impaired.

TR:

Second, advocacy

SL:

I think when many people hear the term advocacy they automatically associate it with legislative, policy those types of issues. They don’t recognize it for all the rest of the issues that need to be addressed that maybe aren’t necessarily achieved through writing a Legislator.

[TR in conversation with SL:]
Such as?

Sl:

Educating the public about the abilities of people that are Blind or visually impaired. The peer support that is necessary to take someone from not having any idea about what their own capabilities are and providing them with the ability to listen and offer them guidance.

That’s advocacy too.

TR:

So, how exactly does PCB offer support?

Here’s three ways.

Audio: One!

SL:

Peer discussion calls – these are organized usually around a specific topic. We have a conversation around issues such as travel when you’re Blind or visually impaired. We talk about our own experience , we share our stories and we provide a forum where we all learn from one another.

Audio: “Two!”

SL:

Peer Mentors – A lot of times the best way to cope with losing vision is to talk to someone who’s been there. None of our experiences are ever the same, but they’re similar.

TR:

Through their network which includes people who span all degrees of vision loss, from low vision to total blindness, PCB has something else to can offer…

SL:
Someone to talk to them on a one on one basis and provide them with guidance and advice and support.

Audio: “Three”

SL:
Local chapters – throughout the state we do have chapters who usually meet on a once a month basis and these are people who are blind or visually impaired who are more than willing and ready to welcome those who are new to vision loss and to really provide that connection and that one on one in person peer support.

TR:

While the local chapters are obviously specific to the state of Pennsylvania, “One and two” the discussion calls and peer mentors are all open to anyone experiencing vision loss.

SL:

Some of the specific advocacy discussions might be Pennsylvania specific but there’s a lot of information that we share that’s blindness and support related that isn’t geographically specific.

If you or someone you know is an individual who has vision loss and who’s vision loss has occurred within the last five years, I encourage you to apply for our Adjustment to Blindness First Timer Conference Scholarship.

TR:

This is a full scholarship! It covers your attendance for the weekend. That includes your registration, conference meals and activities, hotel…

SL:

And it will also cover ground transportation to and from the conference. To learn more about the scholarship, contact the PCB Office at 877617 – 7407 or send an email to Leadership@pcb1.org.

TR:

But that’s not it!

Maybe you’re thinking, Thomas, I’ve been Blind for more than 5 years and like you I believe the adjustment process is an ongoing thing and I really would love to attend. Are there any opportunities to help me get there!

Well, yes! PCB has some additional scholarships that you can check out on their web page at pcb1.org/conference

And then there’s also a $500 merit award available this year, specifically for those who are Blind or Visually Impaired and currently enrolled in a vocational or academic program.

SL:

Or some type of professional licensure.

We’re actually going to award three individuals stipends to attend the PCB Conference. So the top three finalists for the Merit Award will receive stipends to attend which will include the hotel, travel, conference registration and meals. Once folks get to the conference, those three individuals, we will announce who will win the grand prize of the $500 Merit Award.

TR:

That’s a great opportunity! I’d love to see it go to someone in the Reid My Mind Radio family.

Whether you, a family member or friend is adjusting to blindness or low vision; the PCB conference truly can be the experience that you need in your life right now.

SL:
But if you can’t make the entire weekend, and you can only pick one day to come and join us, I really encourage you not to miss our Saturday morning presentations. It’s going to be amazing!

TR:

It’s going to be hot!

It’s called SPARK Saturday because we’re bringing that heat!

[TR in conversation with SL:]

What about you? How has your involvement with PCB impacted you personally?

SL:

You know I’ve been involved at the leadership level and involved in the work of the organization for so long, I’ve gained so many skills. So I mean I’m a much more well-rounded person with regards to blindness skills but also skills that are work and project related.

TR:

The result of actually doing the work?

Sl:

I have a lot more confidence now in my abilities than I used to.

TR:

That confidence extends way pass the work.

Last year Sue decided to write and direct a play for PCB’s post banquet entertainment.

She cast it with her PCB peers.

SL:

It’s just such a fun time to rehearse with people. Really get to know people in that way where everyone is just kind of dropping their guard and letting you see the silliness, the fun. In the whole process of it such peer support we exchanged. I never would have had the confidence to do that. To write it and actually put it out there for people to kind of judge it. I wouldn’t have had the confidence to do that if I wasn’t a part of this organization.

TR:

Now, if you don’t mind, I’m going to get a bit nostalgic!

Audio: Can’t Stop Won’t Stop PCB

You see, for several years, I served as PCB Conference Coordinator. I used to circulate conference information via audio. It was called “The Blast”. One of the things I did was conclude with the conference details… it went something like;

The 2019 PCB Conference will take place in Harrisburg, PA at the Crown Plaza located on South Second Street – just two blocks from the Amtrak and Greyhound station. (I told you it’s going to be accessible!)

The PCB room rate is;
94 dollars per night which is for a room with a king size bed.

(For the aristocrats among us!)

102 dollars for a room with two queen size beds.

(For the money savers or the very friendly!)

The festivities begin on October 17 and last through October 20, 2019.

For all the details visit pcb1.org/conference
Or you can pop over to this episode’s blog post at ReidMyMind.com for all the links.

If you want to reach out to Sue, well she’s not on Twitter, yet! She is however on Facebook if you can spell her name correctly, Susan Lichtenfels.

Every time I speak with Sue it leaves me with such a warm fuzzy feeling! She’s always so kind and patient especially with me as I often ask things at least twice.

TR:

What’s the qualifications for that again?

SL:

Oh my God, you’re gonna get kicked in the face, I swear to God!

TR:

Laughs… I want you to just say it!
SL:

My legs may not work but I might just give you a kick in the face!
(The two laugh together!)

Audio: Can’t stop, won’t stop PCB Conference!…

Audio: Explosion … Blast!

Audio: Reid My Mind Radio Outro

TR:
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

Reid My Mind Radio: For the Love of Honey

Wednesday, October 11th, 2017

Picture of Ojok Simon in front of a blue covered background.

This third segment features Ojok Simon. Attacked as a boy in Uganda by the infamous army of Joseph Kony, hear his journey to becoming one of the first three Holman Prize winners as an Entrepreneur who is about more than just bizzzzness!

Resources

Transcript

Show the transcript

TR:
What’s up RMM Radio Family…I’m excited for another Holman Prize winner story, but I’m also a little down. It’s the third in the series of 3!
Well when I get down, I sing the blues.

[Audio: Muddy Waters, Honey Bee]

TR:
Nah, I’m not blue! Let’s Go!

[Audio: Reid My Mind Radio Theme Music]

TR:

Today we conclude our three part series featuring
all of the Holman Prize recipients.

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

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

In order to meet our third winner, I had to travel to Uganda in East Africa. Well, via Skype!

Ojok:

I am Ojok Simon from Uganda. I am from the northern district of Gulu.

I was a child growing up in a rural community. I used to play a lot with all my fellow peers. We enjoyed hunting for wild honey . We liked playing hide and seek games. I used to have a lot friends. many people would come and play around with me . they would come to listen to my stories . I liked creating jokes . I liked giving tough predictions in the future. So I’m that kind of crazy person.

My ambition was to be a military doctor.

TR:
Sounds like what we would think about as life for a young boy.

However, during the late 1980’s
Joseph Kony came into power and his Lord’s Resistance Army
terrorized Northern Uganda.

The LRA is Known for forcing children to serve in their army and
all sorts of brutal atrocities.
At 9 years old, Ojok’s home in Gulu was the site one such incident.

Ojok:

They found me and my mother were still in the house. And they thought that being a child I was going to run away. So they started to beat me at the temple of my head using the butt of the gun. I fell down with a lot of pain. I didn’t know and my parents didn’t know that there was that kind of internal injuries of my sight. After three years they started to realize that my vision started deteriorating and there was no medical attention that I could seek because everybody, every area was in war. The doctors live in fear so you can’t get medical attention. After five years I had to go and join the blind school. Even when I was trying to seek the medical attention through the blind school there was no equipment so that they could help me so I had to remain with the condition like that.

TR:
That condition Ojok described is low vision. It’s important to note that the School for the Blind in Uganda doesn’t take acuity into consideration when creating the curriculum. Everyone is taught Braille for example, large print is not an option.

Another part of his studies included what Ojok refers to as psycho social support or therapy, which is what helped him eventually come to terms with the
permanence of his condition.

Yet, at 9 years old with lots of friends looking up to Ojok that adjustment had to be difficult.

Ojok:
When I was growing up as a boy among my friends I used to like Football. I used to play like a goal keeper so when my vision started losing I started losing friends because I could not handle the ball the way they feel like their leader should be. They said you are blind so cannot associate yourself with us. Life became horrible. To make the matters worse we used to love hunting for wild honey.

[TR in conversation with Ojok]
I don’t know anything about hunting for honey, like what is that process like?

Ojok:
Hunting for wild honey, it’s wild honey ok… of course we live in a community where a lot of bees swarm ok. They keep moving around looking for their house so that they could get accommodated like the hive, but people doesn’t take care of providing a house for the. Now the bees will end up handing on the big thick trees .

[TR in conversation with Ojok]

When they find that honey, there’s no bees there? The bees are somewhere else?

Ojok:
No the bees will also be there because they live together and protect the honey because you know honey is a food for bees as well.

[TR in conversation with Ojok]

… right, but how do you deal with the bees when you’re trying to take the honey?

Ojok:
They do it in a local way. They will get fire and they will burn the bees. Now when the bees run away, that’s when they will harvest the honey. They will not take care of the bees. Now for me it became a challenge because imagine with your poor vision climbing up the trees and trying to move and walk on the branches, balancing so that you can go and remove the honey. So since for me I like also moving in the bush during the daytime because I have some little sight I would get where the honey nests are but at night I could not locate the situation so my peers use that opportunity so that they can get the wild honey . They would take it to their grandparents, they will receive a lot of praises, they would sing them that they are great men and served them with the good food. So now I’m missing those love from my grandparents.

TR:
Chances are, you’re like me. You probably don’t know much about wild honey and didn’t realize it had such value. As we will see, this is just the bee ginning of all this sweet nectar has to offer.

Ojok:

While I was pursuing my studies one day during holiday… Remember I told you that we are also in the war torn area, people then were taken to concentration camps. I was now walking around our broken home where we used to stay. Now while I was walking around there, bees were stinging me from all directions. Then with my poor vision I was trying to run. The direction where I was running that was where the bees were coming from . Then I came across an abandoned clay pot. it was just on the ground. There were bees in that clay pot and I said wow now what can I do. Then I went back home and I came back now because this is on the ground and is in the area where I know , then I harvested the honey. I took it to my mother. She became happy eating the honey.

TR:

Realizing he could easily harvest the honey from this more accessible method, Ojok devised a plan. While his mother was out of the house, Ojok
helped himself to one of her clay pots.

Ojok:

Who has taken this pot of mine… who has taken this pot of mine?

I don’t know… I even denied so, I got the pot and took it next to the one I found in the abandoned home and left those there. Now two pots. I went back to school. Now during another holiday I came back and found both pots are colonized with the honey. And that became the turning point for me.

TR:

Harvesting the honey, Ojok was once again able to surprise his mother.

Ojok:

I took it to my mother and she said hey where are you always getting this honey. I said yes, I have my techniques.

TR:
Ojok admitted to his mother that part of his technique included taking her pot…
His make shift hives produced more honey than his family could consume.

Ojok:

Some of my friends, they started being friendly to me because they want to eat the honey. If you want to eat the honey be my friend so that I can sell you.

TR:

Hiving Bees and harvesting the honey using
clay pots isn’t very sustainable. Drawing the bees away with fire in order to gather the honey, kills some of the bees. Reading more about the process of Bee Keeping in Africa Ojok invested in a new type of hive, while still pursuing his Bachelor’s degree.

Ojok:

I found now they were selling a hollow tree. They would cut the log of a tree then they would produce a hole inside. There are doors so that the bees would stay inside. Bee keeping was not for commercial or social change but just because I love eating honey I want to get praises. So I just continue with the bee keeping. After my formal studies I returned back to my village. I started doing human rights activism for people with disability through the convention on the rights of people with disabilities.

TR:
As an advocate, Ojok was informing others with disabilities about their human rights and how they could live independently.

Remember, Bee keeping to Ojok was a hobby, but his advocacy work led to his discovery of more possibilities.

Ojok:

Then I started meeting some of my fellow blind people that we used to live with them during the school time, but they did not finish their studies. And now they were saying their poor. they don’t have any source of income. I would spend all of my salary on them. When they asked me for soap, I’d give them. When they asked me for something little I’d give them. Then I asked myself self, how long would I keep on helping people like this? Is this really sustainable?

TR:

Ojok’s two original clay pots turned into 12 income producing hives. He wondered why such an idea couldn’t do the same for others.

Ojok:

They don’t have any source of income but for me I’m getting my normal salary. But on another side, my hives are also there. After 7 years I resigned. I decided to go for Entrepreneurship training in India with the organization called Kanthari, which is Braille without Borders.

[Audio: Oprah Winfrey Show featuring sabriye tenberken]

TR
sabriye tenberken started the first school for the blind in Tibet – where blindness is viewed as a curse for something done in a prior life. This school formed the foundation of Braille Without Borders, an organization empowering blind people to take their lives in their own hands.

In 2005 she co-founded kanthari in Kerala, South India. Kanthari fosters participants from all over the world, who, like Sabriye, have a passion to make the world a better place and the strength to be forces of good rather than victims of circumstance.

A kanthari is a plant that grows wild in every backyard of Kerala, a small but very spicy chili with a number of medicinal values. It’s also a symbol for those who have the guts to challenge harmful traditions and the status quo, who have fire in their belly and
a lot of innovative ideas to make a positive difference.

Ojok:
Then I came back. I started now launching my idea venture of providing employment to blind people. Then I started training 22 blind and low vision both men and females from the age of 20 and above. My target is to target those who are already out of school so that they can get employment.

I give them start up kits, like the bee hive. I give them 5 of them each. Then later I started giving them an improved type of bee hive which I too have it’s called Top Bar.

[TR in conversation with Ojok]

Top Bar!

Ojok:
Then I follow them up and I build their capacity and I add them two top bar each.

[TR in conversation with Ojok]

So what’s the difference between that and the other one, the traditional one?

Ojok:
The top bar will produce more honey and then would last longer than the traditional hive.

TR:

The initial 22 students, turned into 38. The lessons, go beyond harvesting honey and
include orientation and mobility, leadership skills

Ojok:

Now something I could not provide they can advocate for their own needs, because bee keeping might not answer all their problems. But it’s just like a spring board.

They started realizing that yes they are human beings. For instance, among the 38 people that I already trained which are practicing bee keeping, three of them actually they have grown more than my capacity. They became recognized in the society even they are now elected leaders to go and defend people who are visually impaired with the local government in the community – which is above me. Even I call them my boss… (laughs)

[TR in conversation with Ojok]

Laughs… How does that feel?

Ojok:
Actually, I feel relief. Inside me I said yes, this is what I want to do. Like a bearing in a bicycle, the bearing is very tiny but it play an important role of making the bicycle to go faster. So I just said yes I’m not being seen but I can see the impact. This has given me the answer I have been looking for.

TR:

Ojok was already seeing some success with his venture. Learning of the Holman Prize competition through his kanthari mentor he submitted his video.

[Audio from Ojok Holman Prize Ambition Video

Ojok:
I would use the prize to empower blind and partially sighted person to be bee keepers in their home. Beneficiaries will be trained in different types of bee hives, introduction to be keeping, honey harvesting, mobility and orientation and they will be sent back to their home to work in their own bee farm. And five years from now I can see blind and partially sighted person being great entrepreneurs…]

Ojok:
When I found out I was a winner I said I can’t believe it…

I think my answer is being well known globally. It’s not only in Uganda because my biggest dream is to create an incubation center that will provide more employment for people with visually impairment through bee keeping by creating a honey factory where they would also now process their honey and they would market and they would do all those things. Those who might not practice bee keeping those who are skillful in other demonstration work and they would also be brought in the system. So after saying that hey I’m I winner I said yes my answer is coming slowly by slowly and I think one day the whole world will know that there are a certain group of visually impaired persons in east Africa in Uganda who are providing the world with tropical honey that is very healthy.

TR:

Creating big goals and achieving them isn’t new to this Holman Prize winner.

Ojok:

I’m the first visually impaired person in my district to go up to the university so I had to show that I can bear fruits. If everything dwells on me then I would carry a lot of burdens. I need them to start carrying their own burdens, but at the moment they’re still dealing with low self-esteem a lot of stigmatization, negative attitude… they still believe in the status quo that if you are disabled or you are visually impaired you cannot do any developmental thing which makes them not so productive.

[TR in conversation with Ojok]

Yeh, and so they start to feed into that mind set and start to believe it and then that’s it, once they believe it they stay there.

Ojok:
Exactly!

TR:

Like James Holman, Ojok Simon has ventured out beyond his immediate surroundings. Forming the right relationships with others who
can support his journey like;
His instructors at Kanthari in India providing Entrepreneurship training.
Working with mentors like Italian Bee Keepers to learn state of the art methods in bee keeping.
Capturing the attention of the San Francisco Lighthouse to
help expand not only his financing but
chances are increasing his exposure and helping him make more relationships to help reach that goal

In the book A Sense of the World, Howa Blind Man Became History’s Greatest Traveler; author Jason Roberts writes about Holman’s encounter’s with François Huber – who Robert’s writes was the most famous blind man in the world at that time.

Losing his sight at 15, Huber’s research is said to have laid the foundations of the scientific knowledge of the life history of the
honey bee.

[TR in conversation with Ojok]

What have you learned from your experience. I mean from that moment where you were 9 and you were getting brutality attacked. It sounds like you had several years of therapy. The dealing with the loss and all of that it sounds like that probably helped you a great deal but in general how do you look back on your life?

Ojok:
When I look back, look back on myself right now I would just say good enough it happened when I was still a child and I managed to cope with the situation, that’s one.

And then two, the best important thing is to have accept yourself the way you are and then learn how to live with it. I’ve learned my weakness and how I can turn my weaknesses into opportunities.
And also I say yes, having the heart of forgiveness. you need to forgive one another. If these people who had beaten me I could get them you’ll just derail yourself from mercy. You just waste a lot of your energy for nothing. You need to forgive them because maybe they did it not knowing . Maybe also they were under certain influences. If they were to come across me I think they would also realize that I’m not saying I’m in a better situation but I might have the material to also help them. If you have the heart of forgiveness even to those of my friends who used to insult me … I’ve forgiven them and now we are still good friends.

[TR in conversation with Ojok]

Wow, how long did that take you to get to that point because, that’s not just about blindness that’s life. And just about everybody can use that. What got you there?

Ojok:
When I look back…

It was a gradual process. One the formal education that I went through. I was feeding my brain with knowledge and though I not yet done it that much, I need to go for my Master’s in the future. It makes me to start analyzing each and every persons act and I say yes maybe they are doing that out of ignorance. Maybe they are doing that because they have not reached the level I have reached. So it took me more than 10 to 15 years when I started learning yes, I need to do this, I need to forgive, I need to accept my situation. I need to learn and do things.

slowly by slowly I was meeting different
characters.

I remember one of my good mentors from Uganda. Sorry she lost her life. She was my good teacher, I think she was also in the World Blind Union that is the late Sandira Frances. She was a totally blind person and she managed to struggle with her life and I was able to learn (from her).

Wherever she is she also feels happy that yes I’ve left somebody who is helping to carry on the work that I’ve been doing.

TR:

Carrying on the work, that sounds like what the Holman Prize is all about.

This brings to mind the African American proverb that dates back to a time it was illegal for enslaved Africans in America to know how to read.

Understanding the power of knowledge those who did learn would teach another. Encouraging them to do the same with the phrase; Each one teach one.!

Blinded as a young boy, Ojok Simon’s life could have easily went down a different path. His ability to find the sweet honey among the destruction left behind in a torn community, wasn’t a onetime thing.

That’s how he appears to live his life.

Ojok is currently engaged and has four children. That includes two young girls who were orphaned and he decided to adopt in order to help spare them what in those circumstances is often a dark future.

If you want to learn more about Ojok’s plans or maybe even see how you can support his goal , you can reach him through his organization’s website. HiveUganda.org.

The official place to learn more about the Holman Prize and even follow the progress of the winners is HolmanPrize.org.

I’m hoping each of these winners will be interested in speaking with me in the future about their progress experiences and of course lessons learned.

I’m Thomas Reid, for Gatewave Radio,

[Ojok from interview: “I love eating honey, I want to get praises!”]

audio for independent living!

[Barbara Streisand’s “Queen Bee” from A Star is Born
The beat loops with background singing what sounds like a bee buzzing….
acapella we hear her sing… “The Queen Bee’s never gonna be alone”
]

## TR:

How freaking cool was that!

I didn’t think this interview was going to happen. I mean connecting via Skype and speaking with someone in my own state can be a challenge. Here’s how it went down.

[Audio collage of TR attempting to get in touch with Ojok via Skype… includes sounds of me drumming on my desk to the Skype music… After multiple attempts which included failure due to storms in Uganda we connected.]

TR:
But Ojok was able to increase his bandwidth on the fly.

I heard about the sophistication of the cell phone market in Africa. So much of the continent’s commerce is done via telephone transactions. The wireless market made that possible without the infrastructure required for wired services.

The cool thing about technology, remember is not the technology but rather what we do with it.

Sort of like the honey… Ojok is harnessing that natural resource to empower others.

This in itself is a powerful statement. If you know anything about how Africa has been repeatedly been robbed of its natural resources, maybe this story takes on another meaning for you.

Big shout out to Ojok Simon, Ahmet Ustunel and Penny Melville-Brown, the first class of Holman Prize Winners.

Join me in wishing them the most success… do what winners do yawl… keep winning!

You too can keep winning… you know what you have to do right?

Subscribe to this podcast on Apple Podcast, Google Play, Stitcher, Tune In Radio or Sound Cloud. Then tell 3 friends…. why three… I told you when we started this series…
[Audio. De La Soul… 3 is the Magic Number!]

[RMMOutro]
Peace

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