Archive for the ‘Advocacy’ Category

Adjusting to Vision Loss – A Creative Approach with Victoria Clare

Wednesday, February 19th, 2020

Victoria Clare with sculpture
Living a creative life for Victoria Clare is more than a way to express herself. It serves as a way to help her own adjustment to vision loss

Hear her story from denial and rebellion to acceptance and putting her in a position to support others.

Victoria Clare is a Sculptor, Musician, Entrepreneur… and she’s working on becoming a Scratch DJ! For real though!

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Transcript

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TR:

What’s up Reid My Mind Radio Family? I missed you all for real!

Happy 2020 to you all!

A bit of a slow start, but you know, you can’t hold a brother back!

So much of what’s going on in the world today makes it more challenging to find that hope and optimism.
Audio: There’s no need to fear…”

Reid My Mind Radio is here!

Let’s get this poppin

Audio: Reid My Mind Theme Music

VC:
“Creativity is one of the most powerful, healing, it’s one of the most connective things that you could ever do to get to know who you really are.”

TR:
Getting to know who you really are is a big part of our early lives especially from our teenage years and on through college. For Victoria Clare, an artist specializing in sculpture, vision loss added to the process.

VC:

I just passed my driving test. I never had a lesson at night ever. Not any reason to that its was just my lessons were never booked for that time. When I passed my driving test I jumped in my car very elated wanted to go tell my boyfriend at the time that I passed my test.
Pulled out of my mom and Dad’s driveway and all of a sudden it became very very apparent to me that I really shouldn’t be driving. I just could not see enough to be driving.

TR:

On that ride to her boyfriend’s house, she clipped another vehicle and lost her driver’s side mirror. Fortunately, no one was hurt. It was enough to prompt her to see an Ophthalmologist

VC:

That’s when I found out I was going to go Blind.

TR:
The diagnosis was Retinitis Pigmentosa.

VC:
My particular Retinitis Pigmentosa is one of the recessive types so therefore we have no people in the family that have had it. So I’m literally the start of the chain if you will.
So finding that out as well kind of made me feel like wow what a responsibility. For me to get married and have children later in life would be a big choice for meat some point in my life which I was very aware of. However, I went back to college.

TR:

College in the UK refers to where many students go for two years after completing compulsory schooling at 16 in order to prepare for
exams to get into university. You can also take
vocational courses
at college.
While studying graphic design with plans to move on to University to continue in this field, Victoria just happened to come across a book about sculpture.

VC:

I knew when it was time for me to go to University that graphic design wasn’t for me. Sculpture was going to be my future
It was an amazing course. It only had 28 places in the whole of Europe. I was lucky enough to get one of those places.
I didn’t really consider that perhaps, hold on a second I may not be able to do this, I just carried on.

TR:

For some that may sound like optimism, positive thinking. But others who have been down this road would probably advise differently.

[TR in conversation with VC:]
Did you have contact with anyone else who was experiencing Vision Loss, anyone whose Blind?

VC:

No. No I had no contact with anyone like that.

TR:

Blind mentors can often help provide guidance, resources, and lend an understanding ear when dealing with all the additional loss that more than often accompanies the vision loss.

VC:

I had a lot of people kind of walk out of my life or just feel very awkward around me and didn’t know how to handle it.
My boyfriend I was with at the time, we got engaged, and he kind of was really struggling with the sight loss diagnosis and he actually saw it as too much for him so the relationship broke down.

[TR in conversation with VC:]

His loss! Hmm. We don’t like him.

VC:

Yeh!

TR:
Victoria soon learned that carrying on would require skills that she didn’t have. Living independently in a new town, navigating both in and outdoors.

VC:

I didn’t realize how simple everyday things would become so difficult for me. I had a hard time at Uny for a very short time, I mean literally I wasn’t there for very long before I decided that I can’t do this. It’s too hard. I left.

My lecturers said to me that I was welcome to come back at any time. Which was really really gracious of them considering it was such a prestigious course.

I had a conversation with my parents, they were incredibly supportive. They came and collected me.

TR:

Back at home Victoria says she isolated herself from the world.

VC:

And I started drinking. Initially it was about trying to numb the pain. I just felt like my whole world had shattered into a thousand pieces. I didn’t know how I was going to go forward. I didn’t see a future for myself .
And then something happened.

TR:

To put it simply, Victoria was introduced to possibility. It came in the form of a rehabilitation specialist.
A really lovely lady. She had a work cut out, to be really fair, with me. I was really super rebellious so I didn’t want help from anybody. You know, don’t treat me like a Blind person bla, bla, bla you know a typical kid.
TR:

Soon after meeting, the rehab specialist realized Victoria wasn’t going to use a white cane.

VC:

I just was not going to use one. I wanted to learn every trick in the trade so I could get away without using one.
She started to teach me other things like echo location, which is still really useful to me. trailing, just small things like that, that was getting me by.

TR:

Sometimes it’s the smallest suggestions that have the greatest results.
She was the one that suggested that maybe I should try some sculpture just for therapeutic reasons.
I went out in my Dad’s shed, I got a big old’ block of wood, stole some of his chisels, used his mallet and started creating. It was amazing. I turned my world around because it made me realize alright, I’ve been diagnosed with this sight loss but nobody’s taken away the skills that I’ve always had. They’re still there.

TR

Remember the skills that she began sharpening in University?

VC:

The background and the love was the figurative work so I created a kind of table top size maybe like two feet tall female figure. I called it “Her Spirit”. that was put into a local gallery and sold. I then kind of returned and created another figurative female figure which was also sold. My work has changed a lot over the years but most certainly it was more figurative work back then.
[TR in conversation with VC:]

Did it represent something in your life at that time or what was that all about?

VC:

I would say for me it was more to do with the fact that the course that I had to leave in Uny was a figurative sculpture course. So of course I was kind of making that connection of wanting to keep the figurative sculpture part of me going even though if I had to walk away from the University

[TR in conversation with VC:]

How much of an influence is blindness. The subject of blindness not necessarily your adaptations if there are some but how much does that play into sculpting specifically.

VC:

Now a huge part because I get inspired by it. For example only two years ago that I put on the first sculpture exhibition that was completely in a pitch black gallery. everybody had to use their other senses to discover what the pieces actually were.

TR:

This particular exhibition enabled Victoria to express herself in three different ways.

VC:

It was to share my personal acceptance of my journey with sight loss. It was to also kind of share sight loss with the general public so that they would have an experience and an understanding of what it feels like. And three it was a very strong message to visual arts because they really , really need to up their game when it comes to accessible art in galleries. Most certainly for visually impaired people . When you walk into a gallery how do we navigate and involve ourselves in our environment? By feeling. To be told that you can’t touch a piece of sculpture a piece of art you’re immediately excluded from enjoying it.

TR:

The exhibit, a first of its kind received national media coverage and all of the pieces were sold.
the result opened new opportunities for Victoria including serving as a retina UK Ambassador

VC:

Raising money to create research and pioneer research for Retinal Dystrophies. public speaking started to grow from there really. I get to speak at conferences and various events. I’m speaking at the World 2020 Vision, that’s in Dublin and also chairing a panel.

TR:

The latter is a chance to meet others impacted by vision loss.

VC:

There’s a connection there. It’s something very special.

TR:

A big part of her personal journey is creative expression. Something Victoria believes can be of help to others adjusting to their own vision loss.

VC:

I would recommend anything that will lift somebody’s mood that will connect them to who they are and make them feel that they are enough and give them self-confidence and self-worth. From sculpture to painting, from dance to music and anything in between. I would just say creativity is one of the most powerful, healing, it’s one of the most connective things that you could ever do to get to know who you really are.

TR:

Her own creative expression goes beyond sculpture.
There’s music which began around the same time as vision loss. Specifically, she began learning guitar from a friend.

VC:

Probably one of the things that helped me as I rewind going back to those dark days because I would sit when I was alone and if I was feeling down would just play my guitar. Just compose. I did find that a little comfort at the time.

TR:

About 13 years ago now, she discovered piano.

VC:

I used to be working in a school and this piano was sitting in the hall never being used and I’d be the only person working up a tinkle you know. Slowly but surely I started thinking you know what this is great, I love it and I ended up buying that piano off of the school and it’s sitting in my spare room now. (Laughs)

TR:

And you’re recording your music?

VC:

I Literally just come out of the studio.
Audio:
“Know you Matter”, Victoria Clare

TR:

Singing and performing in bands since she was 23 years old, “Know You Matter” is Victoria’s most recent production. It’s a message to all those that have self-doubt and serves as a personal affirmation to remind her that she matters. She hopes it will resonate with others.

Know You Matter is available on ITunes, Apple Music, Spotify and just about wherever you listen to music.

Next up creatively…

[TR in conversation with VC:]

And you’re rapping too?
Laughs!

VC:

Laughs! Working on it. I want to get into a bit of scratching, you know Tom. Laughs…

TR:

She’s serious! She’s a Hip Hop fan.

Dela 1

VC:

I like a lot of Hip Hop, Dance music, but then I like a lot of singer song writer stuff.

[TR in conversation with VC:]

Since you said Hip Hop, who did you like?

VC:

I absolutely love Dela Soul. Yeah they were definitely my favorite.

TR:
The more I think about her art, it makes sense. She takes an existing piece of wood and crafts that into a whole new thing. That’s Hip Hop.

This past Christmas Santa brought her a DJ controller or the modern day DJ turntables so who knows what she’ll create.

I know what you’re thinking, does this woman ever get bored? Well, she has the answer for boredom.

VC:

Board sports! (Laughs…)
[TR in conversation with VC:]

Yeh, I guess which is really another form of expression I would say.

VC:

When I was 23 a big life change happened for me because I decided to go backpacking with my best friends around the world. Probably the best thing I ever did. I was being faced with beautiful beaches and all the surf community and I was sitting there watching all these guys and girls just riding those waves and I just longed to do it but in my head the voice was saying you’ll never get to do that you’re going Blind you can’t do that.

TR:

If this were a movie, we’d queue up the dramatic music, the camera would pan out to the others easily riding the waves, maybe one falling off the board. The scene would move to Victoria slowly looking at a surf board next her and then back out toward the ocean. Seated on the san, she’d confidently straighten her back, stand, grab that board and sprint toward the water. Her friends would cheer her on as she paddled out to catch a wave…
But this ain’t no movie!
She privately held on to that desire like so many of us do.

VC:

It wasn’t until 2014 that I was actually doing my first solo exhibition. it was a really big14 piece collection exhibition. It was quite stressful at that time trying to do everything for it.
TR:

That’s when her husband had an idea.

VC:

Let me teach you how to surf . And that was it, I was hooked.

TR:

Once upon a time, she was adamant about not using the white cane. Today, Victoria puts that long white cane to good use.

VC:

Skateboarding!

TR:

that’s her way to expel that board energy when she can’t hit the waves.

And of course, where does Victoria go from here.

[TR in conversation with VC:]

You have a line of skateboards?

VC:

Yep, I’ve got the…

[TR in conversation with VC:]

Geez, you make me tired. (Laughs)
I got to up my life! I’m not doing enough.
(Laughs)

VC:

they’re called Blinded Soul and they’re bespoke solid deck skateboard.
When we started surfing we also taught my nephew to surf and then I took that one step further, I made him a surf board. I did the same for skateboards. I was just so amazed how smooth a ride they are. They’re built like in a retro style. They’re not built for tricks, but they’re definitely built for long distance really, cruising.

[TR in conversation with VC:]

The other day when I was reading your blog I was like man I think I want to do this. (Laughs…). Like, I want to try skateboarding Now it’s been years. I skateboarded as a kid.

Audio: from “It’s A thin Line between Love & Hate”
“Here I am laying in the hospital, bandaged from feet to head

TR:

Ok, all jokes aside, I’m going to give that a try.
My personal creativity and expression for a few years now has been less about sports and physical activity today compared to my past.

For anyone experiencing vision loss, finding a creative outlet is worth exploring. It’s hard because the reality is for most these endeavors just don’t help pay the rent.
But that’s not a reason to not pursue a passion or interest. there’s levels to this stuff. find your level and enjoy. The benefits are real.
Victoria’s pursuit of her own interest in music proved fruitful in ways she probably never expected.

[TR in conversation with VC:]

You mentioned your husband. Did your husband know about your vision loss initially?

VC:

Yes, yes. We met through a band that I was in. I was the singer he was the drummer. he had the same kind of silly sense of humor I guess that I’ve got. We’d just have good fun. He would drive me home after rehearsals and stuff. probably only took a couple of months for me to realize that a. how much I liked him and b, I had to tell him.
I sat in the car with him one night, we were just outside the flat where I was living at the time. And I had to take a very very deep breath and I told him. He just hugged me. And I said to him if this changes things you know it’s ok. And he was like no way. I just couldn’t imagine it changing anything between us.
He’s a very, very positive person. Very optimistic. He supports me in everything I do.

[TR in conversation with VC:]

And what’s this fine gentlemen’s name?

VC:

Ah, this fine gentlemen’s name is Adam.

TR:

you just never know where the pursuit of your interests may lead.
Victoria talks about all of her endeavors over at her blog Beyond Vision.

VC:

I want to reach as many people as I can. I want to support as many people as I can but along the way I want to share my vulnerability as much as my successes. I think it’s all very well to sit an talking about all the wonderful things that you get to do with your life but I think it’s more important to share also the vulnerable side of you too because it makes you more relatable. I really do get quite honest with my blogs. They really do tell a story within themselves. They’re raw, they’re authentic.

TR:
T
Encouraged to write her own story in the form of a book, first reluctant, Victoria eventually had an idea to help make the task more attainable.

VC:

What if I started thinking like the book is an extended blog?
So I got in touch with an editor, Molly Somerfield Smith, lovely lady she’s actually a ghost writer. When I first wrote to her I was kind of talking in a way that I wanted her to write it but she was the person that said to me you’ve got to write this yourself. This is your story this can’t come from me, this has got to come from you.
here I am a year later and she’s now got the version that I put together and she’s editing.

[TR in conversation with VC:]

First of all, I see that you’re doing audio blogs. So it’s not enough that you’re doing all the other stuff now you gotta come on into audio? Come on Victoria let some other people keep the audio… (laughs…)

VC:

You know what tom, it’s purely for selfish reasons.

TR:

For the record, I actually welcome and promote more of our voices in the space.
By now you probably can tell Victoria is all about productivity. She’s voice recording what she would have once written for the blog.

To check out her work and more…

VC:

I’ve got my professional website which is for the sculpture and that is www. VictoriaClareSculpture.com And then I got my advocacy website, VictoriaClare-BeyondVision.com. Where there’s all sorts of crazy stuff going on and it’s also got a lot of resources , support and that kind of stuff. And that’s where the blogs are as well.

TR:
Victoria’s working on moving her sculpture website to a more accessible platform.
You can also find her on Insta Gram at VictoriaClareSculpture. That’s Victoria Clare (spelled out)
Don’t forget to go on over to ITunes or wherever you get your music and get her latest single Know You Matter.

Audio: Break of Dawn, DeLa Soul

Shout out to Victoria Clare for sharing her journey. And shout out to Steph McCoy for making the connect!

I’m always hopeful that somehow this podcast finds those who are in the place where many of us once were.
That’s losing their sight, receiving a diagnosis they never expected, maybe fighting against the idea of using a white cane.

It’s easy to focus on what is being lost but as we heard today, the pursuit of those things that bring joy can really help you find what you’re seeking. It’s just right around the corner.

Audio: Lyrics… “Break of Dawn”

If you like what you heard today, subscribe wherever you get podcasts. Why not tell one or two people about what’s taking place here.
Let’s get this information into the ear holes of those who need it the most. In fact, you know we’re about that access here so it’s available for finger tips and eyes too in the form of transcripts available on 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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Getting Back in the Game with Coach Nancy

Wednesday, November 6th, 2019

There are specific concerns around finding employment for people with vision loss, but so much of the process is universal.

Head shot of Nancy Karas
Nancy Karas is an HR Leader and Executive Coach. She’s worked with corporate clients, private clients and group coaching to help people find their happiness.

Hear how the job search process may have changed since the last time you were in the game. Learn strategies to improve your online networking, find your dream job and increase your productivity.

Listen

Resources

Transcript

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TR:
Welcome back!

My name is Thomas Reid. If this is your first time here, I’m the host and producer of Reid My Mind Radio, a podcast bringing you stories of compelling people impacted by all degrees of blindness and disability.

The objective is to reach those who are adjusting to vision loss or disability. I’m hopeful that the experiences of those who have travelled similar journeys will provide real information and encouragement to those new to vision loss.

For so many, acquiring vision loss or another disability can occur in the middle of a career. For others it could take place in that early phase.

There are definitely challenges and considerations that are unique to those with vision loss, but much of the process of finding employment is applicable to us all.

Today on the podcast, I’m bringing you an expert to talk a bit about the process of finding employment. So if you’ve been out of the job hunting game and suddenly find yourself back on the field, you’re going to want to hear from the coach!

Let’s play ball!

Audio: Reid My Mind Radio Intro

NK:

I teach people to be the CEO of their own life and career. No matter what life throws at us.

TR:

This is Nancy Karas. She’s an HR Leader and Executive Coach experienced
in building healthy companies.

I kind of like the sports metaphor I used in the intro so let’s call her Coach Nancy!

NK:

In addition, I focus on helping people to find their own version of happiness and success.

TR:

Coach Nancy understands this personally. Spending over 25 years in HR leadership roles throughout corporate America until the relationship became adversarial.

NK:

I had to fight management to get people what they deserve.

After 9/11 I felt really discouraged. I was in the middle of New York City, had been living there for 20 years and I just decided that I really wanted to help people unencumbered. So I stepped out of corporate and I started coaching.

TR:

That included working with corporate clients, private clients and group coaching to help people find their happiness. And if you think that’s something people inherently know, think again.

NK:

There’s a very big difference between what we do well and what we love to do. Sometimes we’re confused and we think that because we do it well, because we get good pay for it, because people recognize us for it that we love it. But sometimes our currencies change as a human being and maybe money and praise and title aren’t the most important thing anymore. I help people to really figure out what is the right thing for them next. What is their next step in life. I base it around what fits you.

TR:

Next step, in life, after for example a life change. That could be the loss of a career, loved one, maybe even acquiring a disability, the specifics don’t necessarily matter. Often we’re trying to answer the same question.

NK:

What’s the best thing for me right now? What will make me happy? What will make me feel successful in whatever way I’m searching for success; money, fulfillment, to make a difference in this world, or whatever it might be. That’s what I help people to figure out.

TR:

A life change can make this question feel more urgent. Even more difficult to answer.

NK:

We feel like the power is taken away from us by other people and we give away our power.

I help people to realize they’re already wearing the ruby slippers and that you have the power within you to do whatever you want.

So I teach people how to take back their power, raise the bar for themselves and really do what’s best for them.

TR:

Whatever the decision is, Coach Nancy is all about helping people achieve their goals.

With an understanding that whatever the personal challenge is, we all have our unique strengths and weaknesses.

NK:

I help people to showcase their strengths and find a way to harbor their weaknesses so they’re seen as a positive.

I give people that confidence and that boost they need to go out there and get what they deserve.

TR:

Before we head out onto the field, we need to know how best to play the game.

NK:

traditionally the way we were taught is a very me centric approach. I’m looking for a job where I can grow. Where I can have this and that.

In today’s market you have to approach your search in a I’m here to assist you. Whomever your target is that you’re looking to work for.

TR:

the means of doing this?

NK:

Through the resume, conversations, meetings, interpersonal skills, self-esteem, emotional intelligence. All the different pieces.

## Resume Style

TR:

Let’s take a look at some of the tools we have to help craft our play book.

First mentioned was the resume. That first representation not only of a person’s work experience but the individual them self.

NK:
[
Some people’s resumes I see are four and five pages long. Nobody’s going to read that anymore. Think about technology, everything is moving so rapidly. People don’t concentrate for very long on anything that’s on their computer screen. they listen to it for a second and then they’re distracted, it’s like hey squirrel! They’re gone.
]
We have to abbreviate what we give to people now. If it’s not relevant and applicable to the particular job you’re searching for and it’s going to cloud their ability to see how you’re a fit. We really have to look at resumes now and be more functional than chronological.

TR:

For many, vision loss or an acquired disability results in the loss of a job, or reduced responsibilities.

Rather than highlighting jobs you may choose to highlight skills and experience.

NK:

In a more functional modern resume you bring whatever is relevant. it’s like a tapestry if we’re pulling the gold threads out of our tapestry because we only want the very best of the best. If we’re looking for the gold company that we want to work for we’re only going to pull our gold threads. Maybe the silver threads show that we started silver and moved up to gold. That’s great, but if we have blue, yellow pink, whatever color threads, they have nothing to do with the gold company. So we’re not going to throw them all our threads and they’re like what the heck!

It’s a new way of presenting ourselves.

TR:

But how would you account for jobs that you may have had to take that don’t necessarily highlight your real skill set or are applicable to your desired career path?

NK:

I was freelancing. I was consulting and here are the companies I worked for and you just bullet or include a couple of those companies.

TR:

Coach Nancy strongly recommends your resume doesn’t exceed two pages.

Go ahead and Google sample functional resumes.

there’s even a hybrid version that combines aspects of the traditional chronological resume with the functional.

No matter what format you choose, consider how you approach the next step.

NK:

The traditional way of job search was to look at the job postings or ads and then we would send a letter and a resume and you’d sit and wait and hope that you’d hear back. But technology has advanced our abilities to connect. We have an opportunity now to shortcut our job search.

These days you can really bridge yourself to that other party by doing a lot of homework. try to understand a little about them and the direction they’re headed.

You’ve leveled the playing field because you walk in that room and now you can talk about how you can help them. how your skills are a fit for them.

## Researching Companies

TR:

technology has made researching companies a lot easier and way more convenient. you’re already familiar with some of the tools, but are you using them effectively?

NK:

I love Google. If I want to know what does someone at Bloomberg make if they work in the Finance department at a VP level, that’s exactly what I’m going to type in.

We look at the first or second thing that pops up when we google and then go “eh didn’t find anything!” I click on everything on that page. Sometimes I go to the second google page because I’m looking for information about the company that’s going to give me a hint about their culture, about their work, about their progress.

TR:

Surprisingly, to me at least, ascertaining information about a corporate culture online is possible.

NK:

I first Google what is the culture at Bloomberg. See what comes up. I would also go to Glass Door.com.

Glass Door.com is a website . You have to be willing to anonymously take one of your former jobs and list that you were a programmer or that you were an HR Executive and you give feedback on that former company. It was good it was fair and then you could give specific comments and feedback. Once you do that you have access to Glass Door. And when you’re in Glass Door you can look up any company. There’s tons of information about salary ranges. What people are making in New York for that job, Philly, Georgia. It will also give you some feedback. people are saying it’s a great company but the leadership is never in the office and we can never get answers. If I see one person say it I think well!

TR:

You’re really looking for trends. But you can take all information into consideration during interviews.

NK:

Let’s say people are saying that the company promises bonuses and never gives them. I would make sure when I interview to ask, I’m curious about your bonus structure. Do you give bonuses? Oh, yes we do! Has there ever been a year where you weren’t able to give the bonus you promised? And then you watch them go uh, uh, or they say no we never had that. So you get to talk it out and see for yourself.

TR:

The idea here is to equip yourself with as much information as possible to make sure the company is a fit for you.

Another important part of the playbook; networking.

NK:

Networking is taking place virtually and in person. In person you should look for events where they’re specifically having an event or where it’s industry specific or job specific to you. For example, if I’m HR I want to go to HR conferences. If I can’t afford those big conferences independently of the company paying for it then you go to a one day event or you go to an evening lecture for an hour in HR where you know it’s going to draw the HR community.

##TR:

Whatever the venue, Coach Nancy says it’s not about making sure everyone has your business card.

NK:

What I teach my clients to do is rather than focus on handing out your info, collect info. Now You’re in charge of your next step. Now it’s up to you to figure out where it’s going to go. I wait two or three days after that meeting and then I send them a note on Linked In.

TR:

That’s Linked In.com, the virtual way to network.

NK:

You want to put a professional profile up on Linked In. Let’s say you have a little profile with nothing there and no photo people know that you’re not current.

[TR in conversation with NK:]

I know you’re talking to me Nancy … (laughs) Go ahead!

NK:

I’m talking to you Thomas.

TR:

I know she’s right. And even though I’m not looking for a job, Linked In still makes a lot of sense for someone like me.

NK:

Especially for your marketing and stuff for your show.

I’ve heard CEO’s say that Linked In is their Rolodex. To me it’s a treasure chest. I can find all kinds of people. I help in so many different industries. Linked In has so many capabilities also as a tool. To search, connect with people, post jobs, to apply to jobs.

TR:

That’s the beauty of online networking. The ability to find the connections while you’re in your pajamas!

NK:

It’s called direct contact.

TR:

. In theory this approach can make the job search process more accessible. It definitely puts you in control.

Here’s how it works.

NK:

Go onto Linked In. find the person who would be the hiring manager or if you’re senior enough in your career and your job function would be very senior in the company , I would write directly to the CEO.

TR:

It’s possible that the majority of those listening are on the CEO level, but No matter what level you occupy in the corporate structure, the process is the same. Sending a note directly to the person through Linked In.

NK:

you want to show them that you see why they’re special and you’ve got the goods to support the direction they’re going. So I say I recognize you and what makes you special. It’s so exciting to me or thrilling or I’m so passionate about the work you do. I believe I could be an immediate and significant contributor to your project, to your team, to your company or to your mission. Here’s specifically what I bring to the table. Bullet, bullet, bullet, bullet. Then would love to set up a meeting or take you out for a cup of coffee or set up a call. Whatever you feel comfortable with.

TR:

Coach Nancy shared an example of someone who wanted to leave their job. The right question dictated the next steps.

NK:

Why not get you your dream job? Tell me what it is. She wanted to work for Google. So we looked to see do we know anybody at Google. How did we do that? We went on Linked In, we looked in the search bar, typed in Google and then we filtered on people. All the people that work for google come up in that search and it’ll tell you if you’re a first, second or third connection.

TR:

What if you don’t have a dream job? Maybe the idea of a traditional job is more of a nightmare. For whatever reason!

NK:

We’re not happy at work. We’re not enjoying our work. We don’t want to commute anymore. We’re physically, emotionally or mentally challenged and cannot make that trip or do that grind everyday whatever it might be. And if that’s the case this is the perfect decade for that right now because more and more companies are allowing people to work from home or to work from a We Work or some other center where people can just go locally if they want to be in a shared setting. there are so many nontraditional jobs.

TR:

here’s a method for thinking and mapping out opportunities.

NK:

What I like to suggest is that people think of a food chain.

TR:

The idea here is to identify the industry connections based on the things that are of interest to you. Therefore, the beginning point is based on a certain set of questions.

NK:

Where am I right now? Where is my interest? Where is my challenge? What is my life about right now?

I’ll give you an example. You lost your sight and you found your way to developing your podcast, your show and all the stuff you do to support people who are going through the same challenges.

TR:

So in this example, this identifies the starting point of the chain. Now I need to figure out all of the opportunities or players in the industry.

NK:

You look at corporate opportunities, nontraditional associations or foundations. And you look all around and say who is in this field that I might work for that’s not the straight and direct line of what I thought I might do. It’s thinking outside of the box. And when you do sometimes you find jobs that you never even knew existed.

TR:

Maybe the jobs are based on the traditional employer employee relationship. perhaps they’re more like opportunities for freelancing or consulting that work for your lifestyle. Either way, attitude makes a difference!

NK:

I suggest first of all that people think and act all the time as if they were a consultant. Because consultants never have all the answers. That’s not our job. Our job is you tell me your problem, I’ll figure it out. I will get you the answers.

TR:

I think it’s fair to say that work is different now. The days of working for a company for 30 years are gone.

NK:

So people are forced to become more resilient, more flexible, more autonomous in their careers. You’re really your own boss, your own CEO and you’re going from company to company and you’re consulting whether you go in as a full time in house person or you actually consult for them.
But this way And the concept of finding a job one time

TR:

It may all sound tiring and hard to manage. But Coach Nancy has a method for managing it all. Just think of the ducks. You know the ones at a carnival or fair.

NK:

That booth where there’s a bunch of yellow ducks and everybody’s squirting the gun to squirt your duck and push it up to the top of the hill. The person who gets their duck up to the top first is the winner. In this game, in my head what we do is we line up the ducks.

TR:

Where each duck is a stand in for one of our tasks or responsibilities on that good old’ to do list.

That could look something like;

Edit the next podcast episode, [Audio: Quack!]
Research future guests and show ideas, [Audio: Quack!]
Finish that spreadsheet, [Audio: Quack!]
Clean the garage, [Audio: Quack!]

Now, back to the carnival and all the ducks.

NK:

Now the goal is not to race one duck to the top, we tend to do that in life sometimes. We pick one thing and we only focus on that. But then what happens is we’re at the top with one accomplishment and nothing else is moved forward.

TR:

Even worse, what about the days when you just don’t feel like pushing that stupid duck. [Audio: Quack!]
Sorry, it’s just sometimes you’re not feeling in the mood for spreadsheets, so You decide to read an article and next thing you know it’s the end of the day and you have nothing accomplished.

NK:
[
Pick another duck!

Maybe it’s the garage you’ve been meaning to clean out and it’s a beautiful afternoon. So instead of sitting inside and feeling depressed by pushing a different duck forward an easier duck that day, we still end the day feeling accomplished. Now the garage is half cleaned out! We start to create our own momentum. Momentum creates more momentum.

TR:

Who doesn’t like feeling accomplished at the end of the day?

I’m a fan of the duck approach, but you can use whatever works for you.

NK:

You have to keep in those parameters that it’s always something productive.

[TR in conversation with NK:]

Laughs… Sitting back and getting a six pack or something like that doesn’t count right?
Laughs to fade out

NK:

Uh no! No!

I think if you’re lost or stuck you really want to reach out to someone who’s walked your path before. Whether it’s professionally, personally. Just like people in AA have a mentor it’s really good for human beings to have somebody they could go talk to or get advice from. So whether it’s a therapist or coach or a support group, I think in order to move forward in life you do have to ask for help because that’s how we learn and grow.

[TR in conversation with MA:]
I might add one other thing to that is a podcast. And I’m not just promoting mine here (laughs) but in terms of you know having someone who’s walked that path, when you’re fearful about asking for help the thing that makes a podcast so cool is that you can get that information and nobody has to know that you’re getting it.

NK:

I love it! Very good advice.

And there’s so much good stuff out there. Not as good as yours…

[TR in conversation with MA:]
Thank you Nancy! Laughs…

NK:

your welcome !

There are so many resources on the internet. We really have to be our own advocate and we have to do our homework and really search.

TR:

We should be very used to that message. Being our own advocate.

I really do hope that this podcast is serving as a resource for those adjusting to vision loss.

So often it seems that the world has lowered the bar for those with disabilities. Whether it’s being falsely praised just for showing up or if it’s assuming you wouldn’t be able to do… [fill in the blank according to your own experience]

Shout out to Coach Nancy, her message is about empowering individuals not only when it comes to finding a job, but really, living your life.

[TR in conversation with NK:]

That makes you officially part of the Reid My Mind Radio Family!

NK:

Oh I love it! Thank you! Ohh!You just made my day. I love it!

[TR in conversation with NK:]

Laughs…

TR:

Can you guess how to contact Nancy?

NK:

Linked In. Nancy Karas (Then spelled out)
Instagram @Transition.Coach
I’m on Facebook, Transition Coaching and Career Management with Nancy Karas or you can just connect with me Nancy Karas. My website is www.Transition.Coach. No .com just .coach. My phone number is (661) 309-7055 and the email is HabitatForHR@gmail.com.

# Close

Big shout out to Coach Nancy! And check this out here, I am very happy to report that as of this episode, one of my [Quack, Quack!]ing ducks has finally reached the top. At least for now. I cleaned up my Linked In profile a bit. I added a pic, updated some other info and made it look current. In fact, I’d invite you all to connect with me on Linked In if you’re there. How’s that Coach!

You can also find me, well Reid My Mind Radio on Apple, Spotify, Google or where ever 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

[Audio, Quack, Quack!]

Peace!

Audio: Quack!

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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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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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Transcript

Show the transcript

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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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