Posts Tagged ‘Advocacy’

Let Me Hear You Say Black Lives Matter

Wednesday, June 17th, 2020

In gold lettering on top of a red, black & green background appears "Reid My Mind Radio."

the title says it all! It’s the place we have to start if we are really going to make change in this country & world. I’m talking about individuals as well as society. And included among that group are the blindness consumer advocacy organizations; ACB and NFB. While there are differences in the founding philosophies of each, at the core both of these groups strive for Blind people to have the same rights as our sighted peers. Do they really mean all Blind people? I want to believe they do, but I guess I’m going to need to hear them say it; Black Lives Matter!

I’m trying to remain optimistic but right now, it really takes a lot of effort to be hopeful. I was reminded of a story from the Reid My Mind Radio archive that in a way illustrates some of what needs to happen in order to really move forward.

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Transcript

Show the transcript


Audio: Music… “Mission Start”

TR:

Welcome to or back to the podcast! My name is Thomas Reid and I’m the host and producer of Reid My Mind Radio – the podcast bringing you compelling people impacted by all degrees of blindness and disability. Sometimes I share experiences of my own as a man adjusting to becoming Blind as an adult.

today, well, it’s right there in the title. That is, the place we have to start if we are really going to make change. I’m talking about individuals, society and yes blindness & disability advocacy organizations.

If you’re part of the Reid My Mind Radio family, you know I’m pretty optimistic. It takes a lot of effort right now, but I’m trying y’all, trying to remain hopeful.
Audio: News commentator announcing global protests in London, Australia, Japan, Korea & Germany. All mixed with the chants of Black Lives matter!

TR:
That solidarity & declaration that I’m hearing from around the world, feels good, but I
need to hear it from voices much closer to home.

Audio: Montage of voices saying Black Lives matter. Each panned along the stereo spectrum.

TR:
Let’s go!

Audio: The final voice says;
“Yo, Black Lives matter!” The voice of Siri from the IPhone says” Send”

Audio: Reid My Mind Radio Theme Music

Audio: Sounds of dinner table/kitchen conversation from the Reid family household.

TR:

Like a lot of families meals are a time to come together. Not only to prepare and enjoy the food but also to check in with one another.
In the Reid household, we established some rules years ago around what was acceptable during meals. Like we don’t answer phone calls, we don’t look at our devices but rather we stay in the moment while we are eating together.

Audio: News commentator on the killing of George Floyd and protests.

TR:

Unfortunately, no matter how much I would like the rule to be in effect, just while we’re eating, there are times we can’t really afford to keep them. The most recent murders of Ahmaud Aubrey and George Floyd, the protests and of course, the self-described nationalist in the White House have caused us to rescind the rules. Both of my kids need to discuss all of this.

Riana who will be 23 soon is extremely passionate when it comes to issues around social justice. She needs to be active and she’s figuring out the best ways for her to do that. For example, donating to protester bail funds, continuing to educate herself through reading and research and sharing resources with her network.

Raven is younger, more internal and is really figuring out how to articulate her thoughts. Her friend groups are very diverse and she recognizes the differences and really appreciates them. Recently, she had to deal with the outing of a classmate, one in particular which has garnered a lot of national attention. This young 17 year old made very public awful racist comments. Listen to the statement from a young girl from Generation Z. Some thought this would be the post racial generation free from racism. Notice how deliberately she shares her revelation.

If you are triggered by little racists using the N word, skip ahead about 34 seconds.

17 Year Old Racist:

So, I’ve been seeing this video going around about why Brown people should be able to say the N word. So I’m here to tell you why white people should be able to say the N word. Because we made it up and none of you guys would be able to say that word if my ancestors didn’t decide to call you Black people Niggers all the way back in those old days. And so what do you guys do to try and show your appreciation, for coming up with your best word to call your best friend Nigga as you pass each other in the hall? You do what all good Black people do, you stole it. So all I’m doing here is trying to take back what’s already ours.

Audio: Ambient music

TR:

If it was shocking to you because you never heard this sort of language, it’s time to acknowledge your privilege. It’s not a time to pat yourself on the back because you raised your children to be color blind. It’s not a time to feel the need to share how you cried when Dr. King was assassinated or even you know someone who is Black. That doesn’t work towards a solution which makes you part of the problem.

Not even the four walls of our comfortable home can keep my family protected from the reality of violence against Black men, women and children. Like trying to explain to my kids how Travon Martin’s murderer was not going to face prison. Michael Brown’s killer would just walk free.

Riana has goals of moving out on her own. Meanwhile Breonna Taylor a 26 year old Emergency Medical Technician gets shot 8 times in her own home by police after wrongfully busting in her house in search of a suspect already in custody.

Audio: Two young children saying “Black Lives Matter”

Raven right now is learning to drive and I have to think of Sandra Bland and the others who have ultimately have fatal encounters with police because their driving while Black.

A word of caution:
What you’re about to hear is an example of the trauma and fear associated with police brutality. If the threat of violence is triggering, please skip ahead about 2 minutes.

Audio: Woman passionately trying to help a young Black man while he is being surrounded by police. We find out her boyfriend was also killed by police. The audio ends with her sobbing for them to simply put their guns away while begging the young man not to move.

TR:

Y’all know this isn’t about my privileged dinner time, right?

for Black people, it’s not only the threat of violence and interactions with police, but not dealing with the feelings around these murders is like allowing a virus to infect our bodies. We can wash our hands regularly, sanitize every package that comes into our homes, eat organic food but how do we protect ourselves from feeling as though we don’t matter.

Audio: A woman saying Black Lives Matter.

TR:

Being totally Blind doesn’t stop the images of these horrible killings from being engrained in my mind. I don’t need to see video of Michael Brown’s body left on the street after being murdered, I don’t need to see Ahmaud Aubrey being shot down or this deranged so called officer kneeling on George Floyd’s neck to understand what that looks like. In fact, these images involuntarily flash in my mind without ever having seen them.

Recently I tweeted that I was waiting to hear a show of solidarity from the blindness organizations. I soon read one from NFB and then specifically questioned if ACB was going to show their support. They did. They also directed a tweet to me that they were waiting on a review before posting.

My response was that I was happy to see them done but the real statement will be seen in their actions like representation on their boards and leadership position and outreach.

Both statements were weak. In general, any solidarity statement at this point in time that does not include the simple phrase acknowledging that Black Lives Matter, it doesn’t have much weight in my opinion.

Audio: fire engine racing towards a burning building.

If a house was burning on a block of 10, should the fire department show equal attention to each house. Wouldn’t it be fair to first put the one fire out? Save the family in the house. Apparently some would prefer the fire department drive right past the burning house in order to make it clear that all the houses on the block are important. Meanwhile, do you all smell that smoke, the other homes on the block are beginning to burn.

Audio: Young man says Black Lives Matter

TR:

If a solidarity statement had to be generated by the Black or multi-cultural segment of the organization, it’s starting from the wrong place. Is that because some blind people like to think their blindness makes them immune to racism? Funny thing is most Blind people have had sight at some point. In fact, most Blind people aren’t even totally Blind. You’re not being honest with yourselves if you think racism doesn’t affect you. As if you don’t benefit from white supremacy.

Audio: Do Blind People See Race…

From Tommy Edison YouTube Channel:
“Martin Luther King always talked about don’t judge a man by he color of his skin but by the content of his character. And I have to be honest with you I think people like myself and other Blind people are the best at that because we don’t see the color of their skin.”

From YouTube, “Can Blind People See Race” Freedom is mine official.
“Can Blind people see race? Given that we identify a person’s race primarily by their appearance, what elements do the visually impaired use to perceive race. Several studies have been done into this area and the conclusion is definitely yes, visually impaired people can perceive race.”

TR:

History has shown when it comes to so called racial issues, America is all about weak statements.

America doesn’t want to examine their role. You know what, let me say that again to not sugar coat it …

Audio: Music…

TR:
White America doesn’t want to do the work to fix racial injustice.

I see the same right now from blindness organizations. Asking Black people to lead this effort isn’t the fix. Rather, once again for Black people, our dinner time with our families are being interrupted.

Why not start with a real self-evaluation. Have a conversation among the organization’s leadership and board about race. Whether personal but more specifically as it relates to the organization. Look back, how many members are even in the organization? How often does the leadership interact with them and what have those interactions been about? How often do we hear from Black people at our meetings and conferences. have we ever truly done any outreach or did we wait for those Black people in the organization to recruit others?

This is a problem that existed in this country for 400 years and won’t be fixed with one statement. it won’t be fixed in our lifetimes. It requires a lot of work that starts with honest self-examination.

To be clear, I think it’s time for these organizations to truly look at the intersections between disability and other identities. The majority of police brutality cases impact Black people with disabilities. Women with disabilities experience an overwhelming number of sexual attacks, LGBTQ and Trans communities have a significant population of people with disabilities. And Black Trans gender men & women need our support. Honestly, if you have a problem with that then you need to ask yourself if you’re really about justice.

All the organizations that are either of or for the blind want the same thing; independence, security opportunity for all Blind people. Who does this really include? For some, blindness skills training isn’t going to be enough to have an opportunity to reach that goal.

For me personally to believe these organizations and others are really about independence for all, I’m going to have to see them lead the way. That leadership needs to come from those in power right now.

I’m going to need to hear them simply say it; “Black Lives Matter”

Audio Montage of individuals saying “Black Lives Matter!” Concludes with all simultaneously saying it.

TR:

In producing this podcast, I’m always searching for the right mix of education, resource sharing and entertainment. As I usually believe our stories have more to offer outside of those adjusting to blindness, I recalled this travel story from the Reid My Mind Radio archive.

Audio from “Traveling Zen”

Audio: Biggie Story to tell

TR:
Just this past Thursday I was traveling to Mobile Alabama –
Yes, Mobile Alabama…
Why?
Well that’s not really for this discussion.

In fact, let’s go revisit the day…

Audio: Car pulling to curb

TR:

Exiting the chauffeur driven Suburban I’m met by one of the Allentown Airport staff responsible for
Assisting travelers through the airport. I refer to them as the Meet and greet staff.
Normally, I have to get to the check in counter in order to request this, but luck
Just had it a very nice gentlemen by the name of Tom was waiting on the curb for someone who needed assistance.

Audio: SoundOfAirport – Check-in/Security

Smoothly clearing the check in process and
Security, Tom informs me that my flight is delayed just as we reach the gate.
It was close to 12 PM. And my flight was originally scheduled to leave at 1 O’clock and
Arrive in Atlanta at 3 PM for a connecting flight To Mobile at 5:15 PM.

Ok, no worries a departure at 2 is fine, I’ll get to Atlanta by 4. No problem, even though Atlanta’s airport
Is huge, I’d still have time to make my flight. And I’d rather wait in Allentown airport which is way smaller and comfortable.

At 2 O’clock I’m told we’re now Departing at 2:30.
Now this is a potential problem! With a connecting flight at 5:15…
There’s a good chance I’ll miss my flight.

I go over to the ticket agent to see what I can do about this potential dilemma.
Rosita, the ticket agent schedules me for the later flight Which leaves Atlanta at 9:15,
In the event I missed the 5:15 flight.

Requiring the assistance of a meet and greet means I’m one of the last people off the flight. This Adds to the probability that I
May miss my connection. On the flip side, I’m one of the first on the plane!

I’m pretty relaxed already, but now I decide it’s time for me to go into a Zen state of mind. One thing about adjusting to blindness, it means
Becoming accustomed to waiting.

The ticket agent announces over the PA that it’s time to board.

I grab my coat, bag and cane and proceed to the counter. I board with one of the ticket agents.
I ask her if she could somehow call ahead and make sure a meet and greet is there
When we arrive so I can exit the plane quickly and make my connection. She takes my boarding pass and says she would do that.

Sitting in the window seat, I strike up a conversation with my seatmate when he arrives on board Delta Flight 5387. I tell him about
My connection issue. He seems to think I have a strong chance of making the flight.
We chat a little more, I put my headphones on, and open my Audible app to read my book. I’m good, I’m pretty relaxed and calm… I accept what I can’t control!

At around a little after 4, the pilot announces that we’re about to descend and
We’re scheduled to arrive on time 4:40. My seatmate, nudges me,
I think you’re gonna make it, he says. Knowing what I know about the wait for a meet and greet
I tell him, “Meh, we’ll see! I’ll still have to wait for assistance…”

At 4:45 we’re on the ground taxiing to the gateway
I take out my phone and check the Delta app to determine the status of my next flight. There’s significant bad weather so I’m hoping
My next flight would be slightly delayed. Nothing…
The pilot announces we’re going to terminal C gate 33. By 5 PM we’re still on the tar waiting to be directed into our new gate, D 33.
My seatmate is excitedly telling me I can make that flight.
“Just run out of here you can make it he says. I’m thinking did he not hear me when I said I need to wait for assistance.

I check the app again, it now says my next flight is boarding and scheduled to leave on time.
At gate D29. I tell my seatmate… Aww you can do it! He says as
he stands up to retrieve his bags from the overhead. I ask him to pass me my back pack and folded up cane.
Is this yours too, he asks
A folded up white cane, I ask… Yes! Now, He sounds confused… I think it sinks in…

My man, I say… do you think you can help me Get to d29… it has to be right near this gate.
I didn’t think it would be a bother, he wasn’t connecting to another flight. Yeah! He exclaims
I say to him… “get in front of me and let
Me hold onto your right elbow.” He complies…
I grab my bag and we take off.

Audio: Victory music

My seatmate now ripping through the narrow aisle. And my shoulders knocking into chairs and walls
He apologizes… Bro, I can take a hit let’s do this… turn it up. Yeah, he exclaims again now even more determined to accomplish his goal…
We zoom past the flight attendants who say something about An assistant… I don’t bother responding, no time for that
My seatmate and I are now a team and we’re on a mission.
“He’s my blocker “I think to myself and we’re gonna score this touch down…

We can do this, I hear him say as we rip past the ticket agent at gate 33… As we’re quickly and purposefully walking, in search of gate D29-
I hear my name. … Paging Mr. Reid, Thomas Reid… That’s me I tell him.
“He’s here, he’s here” yells my Blocker… He’s here, he’s here…says the ticket agent at D29 into a telephone…

We get to the podium at gate 29… Touchdown!!!

As if rehearsed, We do a two hand high five, chest bump, all While the ticket agent and bystanders applaud….

Ok, that would have been the movie version celebration.

Instead, the ticket agent asked for my boarding pass… I retrieve my boarding pass
Thank my team mate and I’m hurried onto my next flight.

I didn’t get his name or even had the chance to Shake his hand, but man I appreciated him.

Sitting on my final flight to Alabama considering how through that entire process
I felt quite comfortable and calm with just going with the flow. I thought about the first part of that very well known
Serenity prayer: God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

This experience reinforces what I believe is the power of team work. I thought about how this pertains to lessons
for those adjusting to blindness or for that matter adjusting to any sort of change.

I’ve always been one to think of that very broad definition of independent as doing something by myself.

Could I have done this by myself… Some may quickly say no, others may argue yes with the right circumstance as in accessible information…
like a good indoor navigation app. But honestly,…,…., it was way more fun with a team!!

Audio Bumper bringing us back to the present.
Audio: Music starts…

TR:

My seat mate and ultimately my team mate for a few minutes at least, was as far as I can tell a white guy. We worked together. I was in a position where I needed him to be out in front if I wanted to make my flight. It wasn’t my only option, but missing that flight would have meant a really long and possibly very uncomfortable delay. Not for him, but rather, just me.

Reid My Mind Radio will be back on August 4th. I have some really good episodes planned for the second half of the year but right now, I need to do a little recharging. If you’re new to the podcast, feel free to check out the archive. We have over 100 episodes and they don’t expire.

You can get that just by subscribing to Reid My Mind Radio wherever you get your podcasts. None of my stuff is behind a pay wall because I really do want it to be an accessible resource for those adjusting to blindness.
Transcripts, resources and more are over at ReidMyMind.com. And yes, that’s R to the E I D (Audio: “D, and that’s me in the place to be!” Slick Rick)

Like my last name

Audio: Reid My Mind Radio Outro

Peace! And I really mean that!
Audio: Headphones dropping on table.

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Live Inspiration Porn – I Got Duped

Wednesday, March 18th, 2020

Podcasting as a passion project takes some real perseverance. There’s always some excuse lurking around the corner just waiting for you to take
hold.

In this episode I’m working through one which has been nagging me for a while. Giving it some real consideration led me to recall a story from my own adjustment experience. A time when I got duped into being a part of a live performance of inspiration porn. Well, sort of. Let’s just say I wasn’t there for the same reasons as those running the event.

Like most episodes, I believe this one can give those new to blindness and disability some things to consider. In fact, like all episodes I don’t think it’s restricted but that’s not really up to me. I’ll leave it right here for whoever wants to partake.

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Transcript

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TR:

What’s up Reid My Mind Radio Family?

Yo soy Tomaso, Thomas Reid, host and producer of this podcast – Reid My Mind Radio.

Welcome to those of you who are new here.

This podcast introduces you to compelling people impacted by all degrees of blindness and disability.

every now and then, like today’s episode, I share some of my own thoughts and experiences as a man adjusting to becoming Blind as an adult. And yes, I say adjusting, I don’t think I’ll ever really use the ed suffix on adjust. That’s not to mean there’s no progress. It’s just a continuous journey. Once you get to the understanding that it’s not one to be feared or even think negatively about, it gets better. But It’s like life, there’s always going to be change, and vision loss or any disability is now a part of that.

If that’s part of your reality, a family member or friend or maybe people you work with, well you’re definitely in the right place. If you yourself are going through some other sort of life change or you just like podcasts. There’s something here for you too, if you are opened to that.

Everyone is truly welcomed here with the exception of those with real hate in your heart. Energy works in mysterious ways and I don’t want that negativity being passed along to me or any of the family.

So let’s get this poppin!

Audio: Reid My Mind Radio theme

# Intro

Today I’m sharing some thoughts about this podcast. These are not stream of consciousness. No way I wouldn’t do that to you. My mind can be a scary place when I’m trying to figure things out.

Audio: Sound of chaos!

Chances are as I navigate these thoughts they will prove to be applicable to more than this podcast and hopefully useful to others. That’s exactly how I feel about every episode. I focus on those adjusting to blindness , but lots of others can relate and enjoy.

Audio: Typing sounds….

Since I began this podcast and maybe even prior, I have been very specific about saying I don’t see myself as a journalist. I’m an advocate, straight up! If you listen to the podcast, you know there’s a certain message about blindness and disability. My opinion or feelings in most cases are evident. The overall message is one of empowerment. I’m not impartial.

Audio: Possibly use old episodes here

As if journalism is really impartial.

There are times though when I need to make all sorts of journalistic decisions. It could be the way I edit or the specific questions I ask, even the overall feel of the show, the sound design. It’s intentional. My approach is different from your standard so called impartial reporter.

I’m connected to most people who are guests on the podcast. Usually, the connection isn’t personal. Rather it’s through blindness and disability Sometimes it could be race or we have something else in common.

I feel a responsibility to both my guests and listeners.

I want my guests to feel what I hear when they tell me their story. I want them to know I respect them and their experience.

I want listeners to find the multiple ways they relate to my guests. Yes, there’s the disability experience, but maybe they share a similar motivation, desire or goal.

That’s what I want, it doesn’t mean I can always make it happen.

every listener brings their own past, prejudices, preconceptions and experiences to the podcast.

That makes sense, it’s like anything else. Two people hear the same song , see the same film or read the same book and have drastically different interpretations.

Some people see a reflection of their own lives and goals while others never see themselves in a podcast where blindness and disability is so prevalent.

It’s probably not one or the other. I think there are some who have a bit of both. Either way, I can’t control that.

Which leads me to this statement…

“You should always remember, there are people worse off than you.”

Audio:

“No matter how you’re sad and blue, there’s always someone who has it worse than you”, Shaggy

YouTube Videos
* ” If you’re having a bad day, just consider the day ….”

* “Bare in mind, there’s always someone worse off than you”

Song sung by Little Richard at a MS Telathon.

“… As I look around, so many people who cannot walk, not talk nor see, I thank God for the health and strength that I have, for there’s someone worse off than I am.”
TR:

First things first…

I’m pretty sure I said this same thing at some point in my life. it’s a common statement and an accepted way of thinking.

But, what does it really mean?

How can you compare someone’s life and happiness without all the information??

Is this really pity?

As a content producer, I cringe when I hear it now especially in relation to my podcast.

There’s never been a guest on Reid My Mind Radio that’s in need of someone’s pity.

I then question the choices made for that episode

Did I present this person in a way that says they should be pitied?

I don’t think I focus on the illness side of things. I do include or mention mainly because;
Others with the same diagnosis can relate.
It can also serve as a way to normalize illness and disability. They are a part of life and not a mysterious thing that happened to one person.

AudioFx: Ambiance head in skull
Am I creating inspiration porn?

Most of you are probably familiar with that term. It’s the
idea of presenting people with disabilities as inspirational solely or in part on the basis of their disability.

This idea that this person’s story which often you don’t even get, well it should inspire you or just give you that warm fuzzy feeling reminding you that most of the world is so considerate.

Watch how the rest of the high school students cheered on as the coach let the intellectually disabled kid in the game for the last 20 seconds.

News Report Audio:
Crowd cheering.Coach: He comes to ppractice everyday, he shoots with them, he cheers them on…”

TR:

Or…

News Reports:
Reporter 1: A very special student indeed…
Reporter 2: All thanks to the compassion of one of his classmates….
Reporter 3: But the emotion of this night involved a student who cannot take the field, but is universally admired for his determination…
Reporter 4: A special needs student with Williams Syndrome. He’s a fixture on the sidelineduring football games always rooting on the team. But hi fives are one thing senior prom is something different.
Student: She could have picked anybody to go to prom with.. her.

TR:

I just don’t want to put that sort of thing out in the world.

Does it sound like I’m making a big deal out of this? Maybe because I’ve seen inspiration porn live and in full effect. In fact, I unknowingly was recruited to be a part of the performance.

Audio: Dream Harp

Many years ago when I was still very new to blindness, I was asked by a local organization serving those with vision loss, to give a access technology demo during an event.

I took to the technology pretty quickly and they thought I could be helpful sharing that information.

There was no money involved of course, but they’d provide my transportation and I think there was going to be a lunch. Whatever, I was down to help the cause for sure.

I was setup y’all!

Arriving at the center, I was shown to the main room where the event was taking place.

There were three or four individuals with vision loss seated up in the front of the room. The rest of the group was seated around a large conference table.

I was shown to a table in the front of the room off to the side where I setup my laptop.

Shortly after, the host of the event, the director of the center, welcomed the guests and kicked off the agenda.

Each of the men and women seated in the front of the room were asked to share the story of their vision loss.

Here’s how I recall that event;
Audio: Trap Beat!

each individual told their story while the event host accentuated the misery.

Storyteller:
” Before I went blind, I used to take long walks in the park
Now, I can’t see anything, my whole world is dark!”

Host: “Pitch black, the world is dark, too dangerous for you in the park.

TR:

Laughs! I said, that’s how I recall it today, but that’s not exactly what happened. But I do recall the questions and comments from the host were obviously selected to highlight the negative.
She was playing to the fear of the guests seated around the conference table.
these were potential donors.
All who probably already had beliefs about blindness;
“it’s probably the worst thing that could happen to you and if we don’t help these poor people they won’t be able to do anything. They can’t do for themselves.”

I was setup to be a part of a dog and pony show to help fundraise for the organization.

the fact that it was a fundraiser isn’t the problem for me. I would have still agreed to attend.
However, I would not have participated if I was aware of the approach being used to raise that money.

My so called presentation was probably less than 5 minutes. The host asked some specific questions and then made it seem like it was my technology background that enabled me to grasp the tools and less about the technology as a tool for independence.

Then they pulled out the glasses.

Audio: Glasses clinking and sliding down a bar!

No, not drinks. I don’t even think that would have helped. . No, it was the blindness simulation glasses. These are created to help sighted people understand what it supposedly looks like when you have certain diseases like, macular degeneration, RP, glaucoma and others.

At first thought, you may think ok, that’s probably helpful. It helps people understand and therefore empathize? Sympathize?

Well, in this particular case, while the dog and ponies sat up in front and this one off to the side a bit, the sighted donors were led into their temporary world of vision loss.

Reluctantly at first, one after the other each slowly began trying on the glasses.

“Oh my”…. “wow”
“where did you go Jeanie?”

And then the real fun began as they exchanged glasses with one another. Laughing as they realized how little they could actually see. Unable to find things they placed on the conference table. The host joking as she moved their cups of coffee.

Meanwhile, the dogs and ponies sat up front. While the jackasses continued with their disability experiment.

Empathy, I didn’t see that. But a check was written.

I don’t remember how the event finally ended, but I do know that was it for me. I checked out. There may have been some additional conversation but I doubt I had much to say to anyone after bearing witness to that display of ableism. I vowed to never be a part of anything even remotely like that.

I could easily imagine each of the donors around the table going home fulfilled and thinking “I should really count my blessings, because there’s always someone worse off in the world.”

As far as I could tell, I was alone in my review of the event. I believe some of the others continued to participate. I pretty much severed ties and ended up having a sort of reputation, so I was never asked again. perfect!

All of this leads to my final question.

How are we telling our own stories?

I highly doubt any of the people sharing their story were given instructions on how to tell it. Chances are, the director simply knew these individuals would supply what she wanted for the audience.

Some may say the ends justify the means. The center received the money and therefore can do good things for the clientele. I don’t agree. I believe several of those in the room were employers in positions to someday hire a blind person. I doubt they would. But that’s a subject for another day.

What thought do you put into telling your own story?

In most instances, we’re doing the telling of our own story. We don’t have a videographer, podcaster, journalist.

We’re probably not standing in front of an audience equipped with a PowerPoint presentation. We’re simply talking to people. Most often one on one.

Crazy thing, I tell other people’s stories but not my own. I can do it in a presentation, no doubt, but one on one not so much. I feel strange.

Audio: Cameo Strange! moves into “Children’s Story” Instrumental Slick Rick

I should tell my story as if I’m giving a presentation. it’s mine, it’s a good one. It’s worth telling. It can be helpful.

And it’s the only one I have.

And in the event someone hears it and their thought is
“Wow, I’m so grateful because I’m not like Thomas!”

My response, Bruh, you should be so lucky!

I’m not flexing’ or being conceited or anything like that. But this is my life why shouldn’t I be proud of what I do, when I do it and how I do it.

the same decisions I make for my guests and you all the listener, shouldn’t I put that much time and thought into my own story?

If you say yes, then maybe you too should do the same.

I told you this wouldn’t just be related to podcasting. In fact, it’s not just related to disability.

Or is it?

“Here we go!” Slick Rick, Childrens Story

You can find Reid My Mind Radio wherever you get podcasts. And if for some reason that isn’t the case, like teddy said, come on over to my place… ReidMyMind.com. That’s R to the E I D

Slick Rick “D, and that’s me in the place to be”

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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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.

Sparking Success After Vision Loss

Wednesday, September 11th, 2019

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

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

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

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Transcript

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TR:

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

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

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

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

First let me drop this on you like…

Audio from opening music (Wow!)

Audio: Reid My Mind Radio Intro Music

TR:

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

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

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

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

SL:

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

[TR in conversation with SL:]

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

Sl:

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

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

Sl:

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

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

Sl:

My first conference as a member was 06.

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

TR:

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

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

SL:

We’ll sit down and do another interview.

TR:

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

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

SL:

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

#Goal Ball

TR:

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

SL:

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

TR:

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

SL:

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

TR:

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

SL:

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

TR:

This appears to be what really activated that inner advocate.

SL:

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

TR:

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

SL:

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

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

Sl:

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

TR:

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

SL:

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

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

Sl:

Correct.

[TR in conversation with SL:]
Cool!

TR:

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

SL:

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

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

# Challenges of Leading Membership Org.

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

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

First, challenges of the membership model itself.

SL:

Engagement.

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

TR:

Second, advocacy

SL:

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

[TR in conversation with SL:]
Such as?

Sl:

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

That’s advocacy too.

TR:

So, how exactly does PCB offer support?

Here’s three ways.

Audio: One!

SL:

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

Audio: “Two!”

SL:

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

TR:

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

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

Audio: “Three”

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

TR:

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

SL:

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

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

TR:

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

SL:

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

TR:

But that’s not it!

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

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

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

SL:

Or some type of professional licensure.

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

TR:

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

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

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

TR:

It’s going to be hot!

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

[TR in conversation with SL:]

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

SL:

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

TR:

The result of actually doing the work?

Sl:

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

TR:

That confidence extends way pass the work.

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

She cast it with her PCB peers.

SL:

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

TR:

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

Audio: Can’t Stop Won’t Stop PCB

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

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

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

(For the aristocrats among us!)

102 dollars for a room with two queen size beds.

(For the money savers or the very friendly!)

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

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

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

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

TR:

What’s the qualifications for that again?

SL:

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

TR:

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

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

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

Audio: Explosion … Blast!

Audio: Reid My Mind Radio Outro

TR:
Peace!

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The Accidental Activist – Alice Wong

Wednesday, April 10th, 2019

Alice Wong, and Asian American woman in a wheelchair. She is wearing a black jacket with a black patterned scarf. She is wearing a mask over her nose with a tube for her Bi-Pap machine. Behind her is a wall full of colorful street art
Founder and Director of the Disability Visibility Project, Alice Wong shares her story of becoming a Disability Activist out of necessity. Her love for stories, people and natural curiosity eventually lead to the Disability Visibility Podcast.

In this episode we talk:

  • Disability, it’s not a one size fit all
  • The origin of DVP & Story Corps
  • What is an Activist anyway
  • Importance of people of color in disability & social Justice movements
  • Why we podcast

Finally, press play and here how Twitter helped Alice and I become friends!

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Transcript

Show the transcript

TR:

What’s good Reid My Mind Radio Family.

back with another episode and this one right here is a goodie! Before we drop that intro music and make this episode official, I want to take the time to welcome any new listeners. Come on in and make yourself comfortable. Mi podcast es su podcast!

If you are new here and I haven’t scared you away yet,, my name is T.Reid producer and host of this here series of audio files transmitted over the interwebs right to your earholes! And since we’re about that accessibility here, we send it via transcript to your Braille embosser, oh and your eyeballs too.

Specifically, I’m talking about stories and profiles of compelling people often impacted by some degree of blindness, low vision or disability. Every now and then I share my own experiences of adjusting to becoming Blind as an adult.

I’m excited about this episode and you should be too.

We have a true well respected superstar disability activist who joined me virtually on the Reid Compound, that’s home of the RMM Laboratory, where you can find me with my audio microscopes, beakers and chemicals mixing up some new concoction.

Honestly, you’d enjoy this one uncut and raw. It’s her work and output that make her dope.

But I’m in the lab, therefore I have to add a drop of this and that because it’s what I do. It’s my way to be sure it gets through the veins a bit faster and right to that brain. This one hopefully will also touch your soul.

Let’s get it!

Audio: Reid My Mind Radio Theme Music

AW:

Hi, my name is Alice Wong. I’m the founder and Director of the Disability Visibility Project. I’m a Disabled person living in San Francisco, California.

TR:

If you’re on Twitter and especially tapped into the #Disability neighborhood, you heard of Alice Wong, @SFDirewolf.

Founder and Director of the Disability Visibility project which means she’s tapped into much of the latest disability related information as it relates to politics, justice and culture. She’s all about amplifying the voices of people of color with disabilities. We’ll get into all that but first I wanted to get to know her a bit more.

AW:

My parents immigrated to the United States in the 1970’s. I was their first kid in America in a new land.

Shortly after they had me my mom noticed other babies my age were crawling. She noticed that I wasn’t crawling the way other kids were.

I was diagnosed with a neuro muscular disability similar to Spinal Muscular Atrophy.

I guess I would also say that because my disability is progressive meaning that my body has changed a lot during my life. I used to walk. Then I used a walker then a wheelchair. And for people who are listening my voice sounds a little funny because I’m wearing a mask over my nose and it’s attached to a ventilator and that’s to get me support when I breathe.

I think this idea of adaptation and constantly trying to adjust and make the most of what I have I think that’s the relationship I have with disability.

TR:
If you’re familiar with Reid My Mind Radio then you should know how I feel about adaptations. In my opinion, it’s just one of the ways that I think non-disabled people could learn from people with disabilities.

It’s the mistake I think the able bodied world makes every day in overlooking a community of problem solvers and creative thinkers.

AW:

Disability isn’t static.

Whether you acquire it during your life or whether you have a chronic illness progressive disability like mine, all of us are evolving, we’re changing and society is changing. We’re entering and exiting different environments . How our disability interacts with those environments, with attitudes with institutions that’s always going to be a variable.

I think that’s kind of exciting in a sense, that we’re constantly learning. It’s not a very simplistic linear experience. For example, blind not blind, disabled not disabled. It’s a lot more complicated
than that.

TR:

Complicated indeed. Just ask someone with Low Vision.

To the casual onlooker, they appear (awh dang, I’m going to say it!) normal). So when they put their face close to an item on a shelf or pull out their handy dandy magnifier they’re faced with the questions. Or they struggle to ask for assistance. Of course there are those with the unseen disabilities who experience similar struggles.
Complicated from both internal and external effect of ableism.

Managing her own disability proved to be an early lesson to Alice’s activism later in life.

AW:

Sometimes it starts with being able to speak for yourself and fight for what you need. That was kind of my experience in junior high and then High School.

Getting angry at things that were happening to me to realize that I had to push back, I had to speak up and fight for myself.

I didn’t think of that as activism. As I got more connected with the disability community in my 20’s. I moved out of Indiana where I grew up to San Francisco and I really found people and culture that really welcomed me. That really opened my mind to like the variety of the disability community and learning more about the history of disability rights and activism. That’s when I really started to realize that being an advocate for yourself is all well and good, but it’s really about changing the system. It’s only through changing systems and cultures that you really make an impact. I definitely feel I’ve been an accidental activist.

TR:

Well what exactly is an activist anyway?

According to Merriem Webster:
a person who uses or supports strong actions in support of or opposition to one side of a controversial issue

The example used is that of a public protest. But who gets to say one version of activism is superior.

AW:

There are people who definitely look at online activism, social media as second rate, not as real that you’re not as hard because your bodies are not on the line.

Audio: Multiple news clips of disability rights protesters over sounds of protesters chanting.

AW:

There’s that very narrow idea of what it means to be an activist.

AW:

I really do take to social media a lot I do realize my own usage is a real privilege.

There are people for various reasons who find social media incredibly inaccessible and overwhelming and I totally get that.

I have privilege in terms of not really having a lot of access barriers the way some people do depending on what platform you’re using. I have access to a laptop and an internet service. All of these things cost money and there’s a certain amount of skills. So those are my privileges that I readily acknowledge.

TR:

Get in where you fit in!

There’s room for all types of activism.

AW:

There are some people who lets say they’re not able to leave their beds and they are just as bad ass organizers and activist than somebody who goes and locks themselves at a sit-in. But I think there’s all kinds of methods and each one of them are valuable.

TR:

Valuable, like the work taking place at the Disability Visibility Project.

Before DVP was known as an online community dedicated to creating, sharing and amplifying disability media culture, it was a means to collect and archive oral histories of people with disabilities.

AW:

It was 2014 and this is the year before the 25th anniversary of the American’s with Disabilities Act in July 2015. I remember around this time all sorts of people, all sorts of disability organizations they were all kind of gearing up for this big event. It was a major milestone.

Back then I didn’t work for any nonprofits, I wasn’t part of a group or anything and I really thought what could I do as an individual. How can I contribute to this? I went to a Story Corps event in San Francisco and they talked about community partnerships that they have in the San Francisco area

##TR

Story Corps’ mission is to preserve and share humanity’s stories in order to build connections between people and create a more just and compassionate world.

They began collecting stories in 2003 at a story booth in Grand Central Terminal in New York City.

After hearing about the various partnerships in San Francisco, Alice went right up to them and was like:

AW:

“Oh do you have any with the Disability community and they said no we don’t”. I thought ok this could be my little way of doing something.

##TR
Little way? Maybe in the beginning but check out the progression.

AW:

I spoke to them about the possibility of forming a partnership with them.

So originally the DVP was going to be a one year campaign to encourage people with disabilities to tell their stories.

Not only are our stories not told they’re not considered as part of the larger American story. You have Civil rights, all the different movements, people with disabilities have been part of those movements.

We’ve also been part of our own movements. That to me is what really motivated me because we all know about Helen Keller and FDR. What about the history of now. What are everyday people doing? What are their lives about? What do they care about. I think that’s what a lot of us don’t realize is that every day we’re making history and the idea of recording a few oral histories and having them archived at the Library of Congress because that’s what Story Corps does, this to me was really exciting because it’s really a gift for future generations.

TR:

By the end of 2018, about 140 oral histories have been recorded as part of the DVP archives.

There was a natural progression from gathering oral histories that lead to other outlets including a blog and podcast.

AW:

I love talking to people. I guess I’m just really curious. I’m always interested in what other people are doing.

the idea of podcasting is like a radio show that’s topical, that’s current that’s really exciting. I was thinking about doing one a few years ago but it seemed really daunting. I wasn’t sure what’s involved, how much will it cost and just whether I would be able to figure it out.

TR:

Well she definitely did that.

She offers some good steps that I wish I thought more about early on.

AW:

Planning, budgeting. I really took my time to have a clear idea of what the podcast would be.

TR:

Since 2017, consistently podcasting publishing episodes every two weeks, The Disability Visibility Podcast is a great resource for conversations about politics, culture and media from a disabled lens.

AW:

Each episode is roughly 30 minutes. It’s divided into 15 minute segments or maybe just a longer extended conversation. I’ve also had episodes where I’ve had a group conversation with two interviewees. Those are fun too. Basically conversations by disabled people about a whole range of topics.

[TR in conversation with AW:]
And it’s cross disability, correct?

AW:

I’m also very open about what I don’t know and my own kind of implicit biases. I want this to be an opportunity to highlight and really just give space to all kinds of disabled people. And also just to not have me dominate or drive the conversation but to really have them being the ones who drive the conversation.

[TR in conversation with AW:]
I think that’s something that you and I share, that curiosity about things.

I don’t know a lot about a whole lot, (laughs) but I know I want to know and the idea of being able to talk to people and just do that and present it in a way. That’s just really cool.
AW:

Yeh! We think of the guests as the experts. I think of the guest as the expert. I want them to shine. My role is to pick the subject and really do the prep work and hopefully ask good questions. That’s what really gives me joy. When I’m in conversation with somebody and you feel the energy when two or three people are in a room and we’re kind of like Jazz, just riffing , improvising and just vibing off one another. That’s what’s so exciting about disability culture it is a shared experience. Whether we are exactly the same or not, but very often just the lived experience. Sometimes there’s a lot of common themes and when we see that reflected upon one another no matter how different we are it just makes us feel more empowered I think.

[TR in conversation with AW:]
Absolutely!

There’s so many different topics and you’re broadening the scope of disability for many people, including myself. I was happy to see you had just recently, the B-HEARD Project and Talia Lewis talking about the prison industrial complex and how that affects people with disabilities. That was a really good episode.

AW:

Yeh, that was kind of a part two of another episode I did earlier, the year before on police violence because I believe they go hand in hand.

There’s the school to prison pipeline which we all know disproportionately impacts Black and Brown kids, but also Black and Brown disabled kids in particular.

There’s mass incarceration, the whole prison industrial complex and the way it really does capture so many people with disabilities. And then there’s the other aspect too. In terms of the everyday violence that happens to people with disabilities but at the hands of law enforcement. There’s a lot of layers I feel like these are issues that sometimes we within the community don’t talk about. We really need to continue flushing that out in as many ways as possible. And to make it as personal as possible so that people can really get a sense , a visual sense of the cost at the heart and the impact.

TR:

In 2018, Alice expanded that storytelling to include the self-published Resistance and Hope anthology.

AW:

the truth during the 2016 presidential election I think I panicked, I freaked out like a lot of people when we realized Trump is our president.

Audio: Clips of 45th POTUS (TR does not say that name.) on disabilities. Includes comments on Paralympics “hard to watch”, comment on Senator McCain being captured and mocking disabled reporter.

Audio: Prophets of Rage, Public Enemy

AW:

I thought to myself ok, what can I do.

We’re going to be entering some really dangerous times under this administration and we know, marginalized folks always knew what the consequences of this president.

What are some of the wisdom and the knowledge and expertise by disabled people who have always been resisting.
This didn’t just happen two years ago.

Audio:
“46,000 year old skeleton of a Neanderthal man, who had significant Cerebral Palsy. Other Skeletons have been found with missing limbs”

AW:

Disabled people have been surviving and thriving and resisting for centuries. Since time began.

Audio: Multiple clips on disability history:
* Aristotle has been said to have been an advocate for Eugenics and the killing of disabled children… let there be a law that no disabled child shall live”
* “Romans mutilated deformed people and just through them into the Tiber River”
* :”Just this past century we had Eugenics and freak shows… that planned to eliminate or denigrate such individuals respectively. Mental disabilities and Dwarfism in Medieval Europe were considered the produce of possession and sin and were often treated as such. With their only opportunities to survive in society as court jesters and fools.”

AW:

The idea for this anthology was really a chance to ask people that I personally admire, that I learn a lot from . people like TL Lewis, Leroy Moore, like Vilissa Thompson, like so many people

It’s an E-Book featuring 16 essays by 17 disabled people.

[
I would say that pretty much
]
All but one person is a disabled person of color. So that to me was also a really intentional thing that I really wanted to center to the voice of disabled people of color.
I really think that there aren’t enough representation and enough attention paid to disabled people of color.

[TR in conversation with AW:]
Why is that important to you. What does that lend to the overall disability movement.

AW:

While I’m thankful for the people who were part of the first, male movement, the independent living movement in the 60’s and 70’s but it was a predominantly white experience. These folks became leaders, formed organizations. They’re the ones that are often noted in history. They’re the ones who are seen as Icons.
I know this in my bones that there were disabled people of color and other marginalized folks that were not given their due. I think that has always been part of the problem of who gets to tell the stories?

It’s always about power. It’s about privilege. As somebody who is proud to be Asian American disabled woman I’m cognizant of the sexism, racism that’s a part of our community. I think that’s something we don’t talk about enough. That we have to like step out be as we have to always hide those parts of our experiences in order to get along. It’s prettier to homogenize our experience and we’re so different, we’re so diverse. Those who enjoyed some privilege in terms of representing our community have really missed out in terms of what we could all learn from each other. I always kind of known that my own experience was very much situated within my culture, where I’m located in terms of growing up in the Mid-West. being a product of immigration. I’m going to see various issues very different from others. I think there’s so much in terms of living with all of these different intersections that give really valuable perspectives. Let’s face it those that set the agenda aren’t really the ones who are the most kind of at the margins. So their idea of what disability rights is may not be what disability rights is for somebody else. So that to me is why I’m very intentionally try to widen the center. Rather it just be white, physically disabled experience.

# Community

TR:

That’s the other aspect of the Divisibility Visibility Project, building community.

AW:

I grew up disabled in the 70’s and 80’s pre internet. It was a pretty lonely experience. I didn’t feel comfortable or confident until much later. I think not only because I didn’t have people like me whether in person or online but I also never saw myself reflected in the media. So that’s another huge reason why right now this time we’re living in is kind of amazing because people are using online tools like Twitter YouTube, Tumbler. We are all creating our own content.

I think it’s a really exciting time to be alive in 2019.

TR:

Through the use of online tools like Twitter and their hashtags DVP coordinates and hosts regular Twitter chats. These are conversations in the form of structured Q&A’s where the community is asked to answer questions on a specified subject.

The beauty of these online public discussions is that others can easily be brought into the conversation or discover them. Plus their archived.

Information about past & future chats are published on the VVP website and shared via the Twitter account @DisVisibility

As far as the future for DVP is concerned,

AW:

The Affordable Care Act, Medicaid, Medicare, food stamps, housing , transportation, education. Almost every one of these areas there have been a real attempt at going backwards in terms of advancements for civil rights and disability rights.

Overall I think it’s been a war against the poor, immigrants, people of color, against the LGBT community and against women – you know reproductive rights.

There’s a lot to look out for.
[TR in conversation with AW:]
This is probably one of the hardest questions Alice. With 45’s (Note – TR does not say that Trump name) and all that, what do you see in the future that’s hopeful?

AW:

Delay – ooh!

[TR in conversation with AW:]

Laughing . Unfortunately that’s a hard question, right? More laughs.

AW:

Yeh!

You know I do find, it is really hopeful to see so many people engaged and politicized in ways they may not have been before. That to me gives me hope that people realize oh shit, we all are in this together.

My friends, my neighbors, they are all going to be hurt. It’s up to all of us to speak against hate, bigotry, and to call it out.

That to me is hopeful to see people not give a fuck anymore. Put aside this whole idea of respectability politics. Oh we gotta be civil, we gotta be polite, we gotta work within the system. Well you know what, sometimes you can’t do that. Sometimes the situation calls for direct action, it calls for people to be angry and to really show that anger. There’s some hope in that. People are hopefully coming to terms with our relationship to what kind of world do we want to live in. What kind of leadership do we want and deserve. Last fall the wave of women and people of color elected for the first time. That’s kind of exciting. People are galvanized. People want to do something. There’s a lot of potential with that.

Audio: “Well you’re quite hostile!” from “Prophets of Rage” Public Enemy

[TR in conversation with AW:]
What is that you like to do when you’re not fighting Ableism Alice?

AW:

Oh so many things Thomas.

I love coffee, I love good desserts with coffee, I love going to bakeries cafe’s, I have a love affair with fried chicken and French fries, I love really really good southern food but also just watching TV, watching cat videos, Netflix. We all need to find things that give us joy. Talking to my friends, being lazy, love to sleep in lay around. Those are things that keep me going.

##TR

Lazy? Do not get it twisted. Let’s take a look at what Alice and DVP turned out in 2018.

Hit me!
Audio: I Go to Work” Kool Moe Dee

I’m going to need the right vibe for this one.

She’s written article for multiple publications on topics including;

the California wildfires
plastic straw bans and accessibility
an essay on the visibility of Senator Tammy Duckworth as a disabled mother of color
HR 620 and disability rights
representation of disabled people in entertainment
for Teen Vogue.

– Published 5 oral histories of some movers and shakers in the disability community in partnership with Story Corps. 

Lots of blog posts including guests posts, Q&A’s

Produced and hosted 26 episodes of the
Disability Visibility podcast
with her team:
co-audio producers Cheryl Green, Geraldine Ah-Sue, and Sarika Mehta.

Multiple media appearances including:
United Shades of America with W. Kamau Bell
on CNN
– Featured in the
Bitch 50,
(I didn’t name it!)

a list recognizing the most impactful creators, artists, and activists in pop culture influential feminists by Bitch Media and
Colorline’s 20 X 20,

Multiple presentations and talks:
the 2018 Longmore lecture at the
Paul K. Longmore Institute on Disability
– Co-presented a workshop on reproductive justice and disabled people

Co- hosted a couple dozen Twitter Chats
for DVP and several other organizations and groups.

Don’t forget she Published and edited
Resistance and Hope: Essays by Disabled People
available on Amazon
and free in multiple formats

To find out more about that and how you can share your disability story and have it archived with Story Corps visit the DVP at DisabilityVisibilityProject.com
Follow them on Twitter @DisVisibility
And definitely make sure you follow Alice if you want to be in the know about disability issues and culture at SFDirewolf.

All these links will be on this episodes show page at ReidMyMind.com.

[TR in conversation with AW:]
Alice Wong yawl!

Salute to you Alice. I think you do some wonderful things and I know I’m learning from you. So I appreciate you.

AW:

Well I am learning from you. And I’m so happy that, again it’s through Twitter that brought us together.

[TR in conversation with AW:]
Yeh!

AW:

That’s what’s really awesome We may have never come across each other in real life but thanks to the internet I could call you a friend.

[TR in conversation with AW:]

Absolutely, absolutely! I truly appreciate that. I truly appreciate you and the fact that you just called me a friend I’m very happy about that! Because I hope to continue this. I honestly do learn a lot and I appreciate that because this is part of my growth and you know finding where I fit in with disability and how this all works and I appreciate it.

AW:

Me too you know It’s all part of the journey, and you’re part of it.

TR:

Tell me who wouldn’t want to be on a journey with cool people, bad asses getting things done and doing it from a good place. I guess could be summed up by a hashtag from another project of Alice and two other disability champions Mia Mingus and Sandy Ho.
#AccessIsLove.

Audio: Music… “It Just Makes Me Happy”, DJ Quad (No Copyright Music)

One thing disability has taught me that applies to just about everything; there’s no normal. There’s the way we’ve been used to doing something and if anybody tells you it’s easy to just change that, they haven’t been through anything.

But we can adapt. We can find a new way and sometimes that new way, even though it’s not the one you would choose, it may be the one you needed and may prove to bring you where you’re supposed to be.

A few things I want to highlight before we get out of here.

No one gave Alice permission to start Disability Visibility Project. She didn’t need a board of directors, she didn’t need a large organization behind her. She made the decision to make it happen.

We can all do that. And if you have to change it up cool!
If you don’t enjoy it that’s cool too. Just start it if you’re thinking about it.

psst… I’m talking to you!

Like if you’re thinking about subscribing to this here podcast, I suggest you follow through with that feeling!

Subscribe!
Apple Podcast, Spotify, Google Podcast, Stitcher, Tune In Radio or wherever you get podcasts.

You can always send me feedback or recommend a guest or topic all you have to do is hollaback!

We have the comments section on the blog, ReidMyMind.com.
The email; ReidMyMindRadio@gmail.com
The Reid My Mind Radio Feedback Line where you can leave a voice mail: 1 570-798-7343

I would really love voice messages that I can share on the podcast. If you don’t want to call, you can grab your smart phone and record a voice memo and email the finished recording to ReidMyMindRadio@gmail.com.

I’d love to hear and share the voices of those who are listening. If you want to send a message but don’t want it shared just say so and it’s all good.

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

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

Audio: Reid My Mind Radio Outro

Peace!

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