Reid My Mind

TR:
Welcome back Reid My Mind Radio Family, as we move forward with our Art of Adjustment season.
As mentioned, I’m doing something a little different with these series of 8 episodes.
Each episode featuring the conversation with my guest, will be followed by a separate episode more personal to me. Based on some aspect of our conversation that resonates with my personal experience of adjusting to becoming Blind.

The purpose?

A challenge to myself and us all to really find the ways we relate to others. I think it could prove to be encouraging.

You know, my guest actually breaks it down.

Krystle:
in order for you to move forward, you have to find within yourself to accept that maybe this is how I’m going to continue on with life, be visually impaired. And that doesn’t mean that I can’t have joy. That doesn’t mean that I’m not going to live a full life. It’s going to be some challenges, of course. But it doesn’t mean that there is no life after it.

TR:
That’s Krystle Allen, from Newark, New Jersey.

Stand up Jersey! (Filtered voice as if on a telephone)

The co- founder of Eyes Like Mine Incorporated.

Krystle:
I am a short five, one and a half Afro Latina female. And I have curly wavy hair to the middle of my back. A nice round face, A rich chocolate brown complexion, a nice smile, dark brown eyes.

I am legally blind.

TR:
In addition to all of that, Krystle is the eldest of seven siblings and a proud aunty.

We’ll get into our conversation, but y’all know I need my intro music!

— Reid My Mind Intro

TR in Conversation with Krystle:
I want to first talk a little bit about adjustment in general, that’s a big part of what this season is all about. So, can you talk a little bit about the early days of your adjustment?

Krystle:
My adjustment to vision loss, it took a while to pack its punch at me.

Before losing my eyesight, I had never met anyone who was visually impaired or anywhere along the spectrum of vision loss.

Once that was given to me in different settings, from a medical perspective to just people I know who had the lived experience I began the process of accepting it.

TR:
I’m a firm believer in the power of people in our adjustment process.
While many different people play a role, there’s just something special about lived experience.

Krystle:
I think my family was going through it a little more than I was at first because they wanted to be there for me. And sometimes they were a little overwhelming with being there for me. But it seemed like they were going through whatever stages of adjustments originally more than I was, because I spent a lot of time with treatment for a year, with my condition in and out of different facilities. I was quiet at first, and very unsure. So, my family was very concerned about me being so quiet, because they didn’t know what I was thinking or how I was feeling about my new lifestyle now.

TR:
Still unsure of what it meant to be legally blind, Krystle, like so many of us experiencing blindness focused on how that would limit the things she’d be able to do.

Krystle:
Little by little, I just kind of tested myself, just because I wanted to try to begin being curious enough. I wanted to just like be the big sister and do the things that older siblings do for the younger siblings. And then I was also being a little selfish.

Music begins: A twisting synth opens up into a calm, mid tempo bounce.

My little brother, because he was turning six and learning his colors. I asked him do you know, red, yellow and green? And he’d say yes.

So when the light turns green, that means we can walk. When it’s yellow, we might have to speed up or slow down, or just stop. And when it’s red, we just gonna stop and he’s like, okay, okay, I was like, you have to hold my hand. He’s like, alright, so I wasn’t using a cane at the time.

TR:
Not unless her little brother’s name is Cain! (Chuckles) But she was a teenager, what do you expect?

Krystle:
And at that time, I was like the in house babysitter even more because my siblings were younger, my mother had to work. My grandmother was working. Everybody was out living their life.
When they needed a babysitter, it was me. So when me and Nick were alone, we would sneak out the house and go to the bodega and get us candy and junk and all the stuff we like, because one thing my family likes to do is give me a little change.

— Sound of change and money.

And then it turned to catching the bus downtown and going into stores to shop for clothes and I always made sure he had his McDonald’s and whatever.

And then one day, my mother found out me and Nick was out.

Sample Exhale… Ooh! You’re in trouble now.

Krystle:
That turned into one day my mom really really needed someone to pick up my other siblings from school and so she realized that I got back home thing, she was like, (in a voice as if imitating her mom) )”Krystle can you go pick up the kids from school?” And I was like, oh, oh now I can go pick them up huh?

TR in Conversation with Krystle:
Chuckles

Krystle:
Being the oldest, I had to do a lot. I learned how to cook at nine years old.

My mother tricked me. She was like, (In a voice as if imitating her mom ) “Oh, you like scrambled eggs, right? (Chuckles) Do you want to try and make some scrambled eggs? So she’s showing me how to do it because I do need to know how to make it. And then all it took was that one time. “All right, Krystle, come make the breakfast for the kids.”

TR in Conversation with Krystle:
Laughs

Krystle:
(Chuckles) Then scrambled eggs turned into baked chicken. But you know, my mom was giving me good tools to set me up for being just independent without having any vision loss.

That was kind of like me stepping into different stages of my independence again, because I was getting my role back as a big sister. I was learning me and my family was learning me as a person who was legally blind.

And then more and more things started happening with my adjustment.

TR :
Eventually losing even more of her sight, Krystle learned to use the white cane.

She used thick markers to start expressing herself in poetry. She began meeting others who shared tips for adapting. She was on her way to figuring it out.

Krystle:
I wasn’t sure of my vision limitations. It just took me so much longer to do things. But I realized that once I did try to see if I could still do what I would do regularly, that it was still achievable. I just had to either use a tool or figure out a different technique.

TR:
One of the things she figured out; Eyes Like Mine.

Krystle:
I worked in the field of different nonprofit non related to blindness in the support capacity. I have always been a part of community development. My dad’s side of the family. They’re very involved in community building in Newark where I live. My dad would pick me up and spend time with me, he would always take me to meetings. And then when I was at the meetings, I began volunteering. From stuffing envelopes to doing telephone banking, to canvassing around communities.

TR:
This exposed her to not only an understanding of activism and leadership but also influential people in the community.

Krystle:
Our current Senator Cory Booker, he was at my 21st birthday party. And he was very instrumental in me getting connected with the New Jersey Commission for the Blind to receive some of my blindness services. And I used to go to his meeting, volunteering, and canvassing and being a part of PSAs as a teenager, before my vision loss, and after my vision loss. So it was kind of like embedded in me.

TR:
Serving the community that is. Maybe it’s from observing other family members or being the oldest of seven, either way Krystle is a natural leader and problem solver.

While going through a breakup she came to a realization.

Krystle:
He’s not even thinking about me right now!

I called my friend, who we both share the same condition that led to our vision loss. And I just asked her, I said, Hey, you want to start a nonprofit organization? And she was like, Yeah I’m with it.

Neither one of us knew what was really going to happen. We didn’t have like a blueprint at first. And we were just thinking like, we’re young. We’re women of color. We’re visually impaired. But it wasn’t a lot of young people that we knew of at that time, in New Jersey, that were doing things to bring awareness.

In 2014, we were able to draft our bylaws and articles of incorporation. And in 2015, we received our 501 C three tax exempt status.

TR:
They began with events like a fashion show where they teamed up with an eye wear company and modeled cool looking shades.

Krystle:
We wanted to kind of like debunk the stigma of Ray Charles glasses. We want to be in style, but we also wanted to bring awareness to people about the importance of protecting their vision, and encourage blind people to feel good about fashion. We didn’t want to remain so event orientated because we really wanted to get to the nitty gritty of things where we can find ourselves connecting with other people’s stories in the blindness community to share their stories and our stories with our community near and far.

TR
That led to other programming including support groups, partnerships with the Lyon’s Club, the Miss Blind Dive Empowerment Pageant and Dancing with the Blind.

Krystle:
And some of these titles and names of programs might sound a little, I guess, funky, to some people, but they are heart feeling, programs and projects.

There were people who doubted us. People who said we should give our idea to other nonprofits under them.

TR in Conversation with Krystle:
Really!

Krystle:
Yep. And if we would have listened to them, we wouldn’t be making it this year to our 10th anniversary.

TR in Conversation with Krystle:
Wow. Well, congratulations on reaching your 10 years.

What was that about, folks telling you to give your ideas to other people?

Krystle:
It could have been many different reasons. Sometimes just the lack of understanding where we were going, what our vision was, everything is not for everyone. I understand that in the field of community development and nonprofit you’ll meet all types of people with different roles and agendas. I have learned that you’ll meet the “Taters”. The spectators, the haters, the speculators, the commentators. You know? (Laughs)

TR in Conversation with Krystle:
Laughing…

Krystle
All of those taters. (Laughing)

TR in Conversation with Krystle:
The Tater Tots! (Laughing)

Krystle:
I just know that we have been very blessed. I’m still very grateful. Because I’ve learned so much. I’ve made mistakes within my nonprofit. But with those mistakes I’ve learned from them, and it’s given me opportunities to really grow as an individual and grow as a leader.

Every leader doesn’t know everything. And is the reason why we need communities to support us so that we can elevate and we can continue to enhance our impact.

Leaders need people not just to serve, but to guide them too.

Audio from a prior Miss Blind Diva Empowerment Pageant:
Co founder Naquela Wright Privo:
“This is about empowerment right? And so I wrote this song to explain my journey with my blindness and where I’m at now. Singing….
No more with the hiding, no more with the jokes, I’m going to face everything I don’t know
It’s time for me to live my life
And I can’t believe I found what I wasn’t looking for”
… continues under TR VVO

TR:
The Eyes Like Mine Miss Blind Diva Empowerment Pageant began first with an open call for nominations of a Blind woman who is a pillar in their community.
Someone who stands out.

Krystle3:23 AM Friday, February 9, 2024
In a way that made you want to connect with more women who are visually impaired and blind.

We announced her in our first year anniversary at a restaurant called Diamonds in the rough. Jay Z’s mom, Gloria Carter actually was one of the owners.

We were able to welcome Patricia Eboo (Spelling uncertain)as our very first. We crowned her and she gave a speech. We decided, to do a full pageant. And we knew that it would be the only one for blind women in New Jersey. And we just wanted to bring more attention to more dynamic women in the blindness community.

A pageant coach, we had a host, we had a DJ who is blind, Mary Kay, makeovers for our ladies.
Since 2017, we have had a pageant every year, even during the pandemic, where we had two virtual pageants in 2020, and 2021.

TR:
From it’s origin, Miss Blind Diva was never your typical beauty pageant.

Krystle:
We do emphasize the word empowerment because a lot of women who have applied and participated, it may have been their very first time participating in a pageant. And the name came from a nickname I gave myself when I first began college, which was Miss Blind Diva.

TR:
It’s actually sort of two pageants in one.
Miss Blind Diva Empowerment and the Miss Independent YouTube Challenge.
For the latter, contestants submit a video on YouTube that displays their independence.
That could mean so many things for each person.

The winners are determined based on the number of likes.

Krystle:
And then that evolved into getting a crown and sash, a fan page, some small cash, and other different things like photo shoots and interviews, being a part of the public service announcement with a local cable channel to even attending the ultimate women’s expo and meeting Fantasia and Abby from Dance Moms, like it’s really been growing and growing and growing.

TR
Of course Miss Blind Diva also wins prizes.

Krystle
Now she receives $1,000, the title, the crown, different appearances that the organization is that
her fan page. Mondays now at 7pm where you can connect with our title holders, on their fan pages. And they’ll speak about things of interest things related to blindness, things related to them being the title holder.

We’ve had women participate as close as New Jersey, Texas, California, Maryland, Florida, Pennsylvania and as far as Kenya, Russia and Jamaica.

TR:
Is the next Miss Blind Diva part of the Reid My Mind Radio Family?

Krystle:
and we just hope that this year will bring another great experience. It will be the eighth annual Miss Blind Diva Empowerment Pageant , which we will hold on October 4, and fifth and 2024.

TR in Conversation with Krystle:
Are there pageants Like that in other states that you know of?

Krystle
I’m not sure, I don’t like to spill out inaccurate information.
I do know that they have Miss wheelchair New Jersey and Miss wheelchair America. There’s one called Miss amazing for another disability community that I’m not really familiar with. So there’s all kinds of pageants but I haven’t heard of another one that is for blind or visually impaired women. But I know that we were the first in New Jersey,

TR in Conversation with Krystle:
Well, I’m gonna say you’re the first in the States period. That’s what I’m gonna say. Anybody want to correct me bring your receipts? Let’s go!

Krystle
Laughing….Oh my goodness!

TR:
I respect that commitment to accurate information even when marketing.

No need to lie or stretch the truth when you have catchy phrases like….

(TR in Conversation with Krystle: plus)
The first one that I noticed was Going growing and glowing. Is that right?

Krystle:
So it just happened that during one of our witness support groups, I was just kind of sharing a message with the attendees. And I just said, you know, we are looking forward to our 10th year anniversary and we’re counting down to just evolving and expanding and going growing and glowing.

TR:
Her friend and co-founder Naquela Wright, thought that could be a good slogan.

Krystle:
It represents where we are going, how we are growing, and how we show up shining around the world. It just represents a lot of empowerment, not just in women, but in the blindness community. For us to have the visibility that we deserve in all areas.

TR in Conversation with Krystle:
Ok! That’s a whole other G status. I like it.

TR:
Then there’s; Eyes Like Mine Where vision loss doesn’t break us, it builds us.

Krystle:
There is life after blindness. It’s an opportunity for us to just connect with the life that we can still assume, the acceptance of our lifestyle, and the culture of blindness.

in order for you to move forward, you have to find within yourself to accept that maybe this is how I’m going to continue on with life, be visually impaired. And that doesn’t mean that I can’t have joy. That doesn’t mean that I’m not going to live a full life. It’s going to be some challenges, of course. But it doesn’t mean that there is no life after it.

TR in Conversation with Krystle:
That’s a perfect way for you to tell me a little bit more about the support groups that you offer.

Krystle:
Usually, the structure of our support groups are that we have featured speakers, we may play some virtual games. We often make sure that everyone who’s attending can exercise their voice, we want to make sure that it’s a talk with you not a talk at you.

The support groups right now are all virtual.

Every first Thursday of the month at 7pm. On zoom, we will have our women of Power Support Group.

TR:
In addition to the Women’s group there’s a men’s group. And periodically, they come together. I had the honor of being a speaker during one of these joint sessions.

I gotta be honest y’all, I think I lost the fellas that day.

I joked about how their name was something like Gentlemen of Leisure while the women are Women of Empowerment. I suggested they step up their game. It was a joke.

They didn’t like it.

Ok, in hindsight, perhaps it wasn’t a good introduction.
I still think it was funny

Krystle:
I’m listening to you, fellas. I really, really am. I’m trying to do more things that represent the men. And I need men to guide me because I don’t know, your life. And my voice was so light. I’m like, Are they gonna even listen to me? I have some men coming at me. Like, why isn’t there a pageant for the blind men?

TR in Conversation with Krystle:
If that’s the case organize it. See how many people you’re gonna get! (The two laugh….)

TR:
I’m saying, fellas. I don’t know what that would look like but go ahead and put it together.

As with the other programming from Eyes Like Mine, Krystle recognizes the importance of understanding that our conversations and interest go beyond blindness.

Krystle:
We have our leisure moments within the support group. It’s important that we kind of had the diversity and conversation. So that’s why we don’t just speak about blindness. And sometimes there are people who are new to the visually impaired community and some who might be a little more suited. So it’s a mixture of all kinds of people. It’s all adults.

Krystle:
Our support groups are under a network through the New Jersey Commission for the Blind and Visually Impaired. Aspire peer support network where it is over 60 plus, peer led support groups across the state of New Jersey, virtually and in person. And Eyes Like Mine organizes the support under this network, so that more people can connect with information resources, and the overall socialization.

TR:
For those who may not be the type to want to have in person conversations whether virtual or not, Eyes Like Mine has you covered.

Krystle:
So we have a group on Facebook called the Peer Support Hub, a division of Eyes Like Mine And anyone can join it. It’s a private group. So you can request access. And there’s a little over 300 members in It. It’s a space where you can share your thoughts, your images, your videos, if you have events or programs like you have your show Thomas , we want your posts about your interview.
It’s a safe space, it’s a way that people can access more information and meet more people.

I’m gonna do my first live cooking. It’s called crushing it in the kitchen. And I’m gonna be showing my guess, viewers how I use my independent skills to cook in my kitchen.
And it’s also a way for me to be encouraged to cook because I’m living the single life and Uber Eats gets expensive. I can cook, I just hate the process. I just wish that the meal would appear and then you know, and then the dishes would disappear

TR in Conversation with Krystle:
You gotta work on that one. (Laughs )Let me know when you get that going. Yeah.
So what’s on the menu? What you cooking? Not those same scrambled eggs, right? (Laughs)

Krystle:
(Annoyingly)You know what? No!

TR:
Ok, y’all, apparently I have to work on my humor. It was a joke.

But what’s no joke is Krystle, doing her thing.
Krystle
I’m gonna try to make it as regular as I can. It’s a personal thing. But it’s also in conjunction with my organization, because there are a lot of Blind people who are afraid to cook. There’s a lot of people who might just make easy things. Why shouldn’t we expand our idea on being comfortable in the kitchen?

I’m going to try to do a step by step with all of my process, and I’m gonna make mistakes because this is live (chuckles) it’s not scripted and it won’t be edited.

To those who are visually impaired or blind, it will open up their minds to the possibilities that if they don’t feel comfortable cooking right now, there is still hope that they can become comfortable. And it’s okay to make mistakes.

When I do make mistakes they’ll know that okay, it’s alright to make a mistake. You could still finish cooking your meal.

TR in Conversation with Krystle:
That’s a great metaphor for adjusting period.

Music begins: A bright and cool upbeat Hip Hop jam.

TR:
Adjustment doesn’t have to be painful!

Support also looks like Dancing with the Blind.

Open to all age groups, it’s the Eyes Like Mine version of Dancing with the Stars.

Krystle:
But in this instance, our celebrity is the blind, or the visually impaired or the deaf blind. And their partner will be someone who’s sighted. Dancing with the Blind can be coupled in a group of two people or more. Once you find your person or if you need us to find a partner for you, we can do that as well. You can select whatever genre of dance or music that you want to prepare for. They have to pick a team name, they have to have a particular kind of costume, whatever represents their style of dance. It’s judged. And we have vendors who have resources, products and services. We have host, our DJ pumpin’ it up. At the recital competition, whoever wins at the end will go home with $500.

TR:
Even Newark’s Mayor, Ras Baraka, son of the writer, poet and activist Amiri Baraka participated.

The event, which sounds amazing, concludes with a group choreographed dance.

Krystle:
Our champions from 2023, Their team name was called Hot muffins.
It was a couple of people, one who was newly visually impaired, the young lady her name is muffin. And her partner His name is Chris. They did a Latin fusion to Taki Taki the song that features Cardi B. It was really fly how they did their dance.

Muffin is very new to the visually impaired community. So it was just such a emotional victory for her when she won.

So we’re looking forward to bringing it back. This is also going to be with the support of the Newark Arts Council who selected Dancing with the Blind at their art start many grants application. This is our first time bringing it back to Newark since the pandemic,

TR in Conversation with Krystle:
okay, I love it. I don’t know if I want to take that money, but I’m gonna have to think about it. (Laughs)

Krystle:
Yes! C’mon Thomas.

TR in Conversation with Krystle:
So it has to be two people, I can’t just come in by myself and just do the Wop? I can’t just Wop it out.

Krystle:
WHAT? No. No. Mm, no, not at all. (Laughs)

TR
Y’all are lucky. I don’t play when it comes to the Wop.

Krystle along with her dance partner Tony who is also Blind teamed up for some salsa dancing.
! (Filtered voice)

TR:
Eyes Like Mine, Miss Blind Diva Empowerment, Miss Independent, Support Groups; all of these programs focus on providing for others.

Krystle:
This may I will be entering a milestone birthday year. I will be 40 And I realized that I do a lot for other people. And it’s very rewarding to me, because that’s just in my spirit. But I need to start doing more things for myself personally.

So one of those things, is challenging myself to have different experiences.

I was born and raised in Newark New Jersey. And this is where my organization was founded also. So I just wanted to do something that represented my city. And that kind of had a correlation to some of my interests, which is fashion and connecting with people. So I entered the Miss Newark USA pageant.

TR:
The goal of Miss Newark USA, created in 2018, is to spread awareness of pageantry, with workshops, etiquette classes, modeling classes, and amazing experiences to enhance careers.

Krystle:
Directed and organized by Alicia Marie blanks. And her mother, Miss candy a mother and daughter duo, women of color. So that was even more empowering for me to participate in it.

TR:
Like other pageants, Miss Newark USA consists of different competitions including congeniality, fashion and talent

Krystle:
I sang the song “Vivir Mi Vida” by Marc Anthony, which means living my life, I thought it was a very great song to represent who I am, because I am just doing that living my life. And just being curious enough about what goes on in life to attach myself to different things.

And then when it was time to announce who will be crowned Miss Newark USA 2023 They announced my name and I was so excited.

Tr in Conversation with Krystle:
Mimics the air horn!

Krystle:
(Chuckles) I’ll say I’ve had other wins in life, but I never won any competition outside of a spelling bee in third grade.

TR in Conversation with Krystle:
Especially for people adjusting to disability, whatever that is, I think winds are really important.

Tell me about some of the wins that you had throughout your life.

Krystle:
My dad was diagnosed with leukemia in February of 2021. And then my mom was diagnosed with breast cancer in March of 2021.

And by November 2021 , they both were declared a clean bill of health. That was a big win for me, because I still have them.

It has kind of transform me in a way where I’m trying to really appreciate life , for what it is.

I can wake up everyday and I get to talk to my parents, laugh with them, get annoyed with them, learn from them.

Getting to see my organization reach 10 years. I’m a woman of color with her own nonprofit for representing blindness.

I had people doubt my leadership, and people doubt my leadership to this day, which is fine. I’m glad that I don’t get easily discouraged.

it was a big support network that I have with volunteers, family, friends, friends of friends. People who are just getting to know me, they’re getting to know the organization and just having the chance to have someone believe in you.

TR:
Now, I can’t top that but I think there’s one more win.
Miss Newark, the original Miss Blind Diva, you, Miss Krystle Allen are an official member of the Reid My Mind Radio family!

— Air horn

Krystle:
Thank you. Thank you for inviting me and giving me the opportunity to share my message on your platform. I really appreciate you. it’s great to see blind black men doing their thing.

TR in Conversation with Krystle:
There it is! Yeh, and winning dance competitions too.

Krystle:
Ooh! You spoke it, you spoke

TR in Conversation with Krystle:
I gets busy.

TR:
For the record, I can do more than the Wop.
I can do the Smurf, the Baseball, the Running Man, the Caveman, The Pee Wee Herman, Electric boogie.
I’m not allowed to break dance any more though.

“Lawd if you’re listening. HELP!” Dave Chapelle “Half Baked”

Music begins: A chill, mid tempo groove.

TR:
Dancing is one thing, but Krystle, Eyes Like Mine are truly doing their thing for the community.

Krystle:
We are in partnership with the Source of Knowledge Bookstore, which is the oldest African American bookstore in New Jersey, Vistas Education and the United Way of greater Newark. And we have done about 80 installments of Braille overlaying African American children books, books like “Chocolate Me” by Taye Diggs, “If Kids Run the World”, “The 1619 Project” and a host of other books in our library to encourage access to grow literacy, and just overall literacy for children to build their vocabulary and gain knowledge.

TR:
recruitment for the 2024 Miss Blind Diva Empowerment Pageant begins on March 1.
The application is available now on their website.

Krystle:
EyesLikeMine.org

TR:
That’s where you can learn more about Dancing with the Blind and all of the activities and events from Eyes Like Mine.

Krystle:
The Peer Support Hub, a division of eyes like mine Inc, on Instagram, Facebook, Twitter or X, YouTube our handle is @EyesLikeMine and our general email address events at EyesLikeMine.org

TR:
Reid My Mind Radio Family, let’s send Krystle and the whole Eyes Like Mine crew some love.
Welcome her to the family, let her know you support what she’s doing and just send her some energy to continue to be determined and not get dissuaded by the taters.

Next up according to the plan for this season, I’m continuing my Self-Portrait.
In the next episode, we’ll hear more from Krystle but I’ll show you how it relates to my own experience.

For example

TR in Conversation with Krystle:
Is there anything that you would want to tell a young crystal now if you could go back when you first got diagnosed?

Krystle:
I would say to myself it’s okay, it’s gonna be okay.
It’s okay to feel what I’m feeling.

TR:
This struck me. It made me think of something specific from my early blindness days.
I’ll talk about it during the self portrait…

— phone ringing

along with a very special guest.

But until then, please, continue to help us get out the word about
all of the incredible people featured here on the podcast.
Tell someone you know who can benefit and enjoy what we’re serving up
that they can find it themselves wherever they get podcasts.
Explain that we have transcripts and more at ReidMyMind.com.
Go ahead and tell them that’s R to the E I D…

— Sample(“D! And that’s me in the place to be. Slick Rick)

Like my last name.

— Reid My Mind Radio Outro
Peace!

Sample: “Doctor said I need a backeotomy!” Dave Chapelle, “Half Baked”

Hide the transcript

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!

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