Reid My Mind

— Tape rewinds
— Music begins: Snare hits increasing in volume into a smooth R&B instrumental…

Welcome back to the podcast featuring compelling people impacted by all degrees of blindness and disability in general. My name is Thomas Reid, I’m your host and producer. We’ve reached the last episode of the YGBD 2022 Season, you know, that’s Young, Gifted, Black, and Disabled. Some people ask me, Thomas, why Young Gifted Black and Disabled? My first reaction? Why not? Then I’m like, Nah, that’s not polite. Am I lying.

Now, if you just caught what I threw down and responded, either in your mind or out loud, “No, you’re quite right,” you and I share something that has nothing to do with blindness. However, that thing we share could also make our experience of blindness different from others. In this particular case, my reference was to an early rap song by Doug E Fresh called “The Show”. Just one of many Hip Hop references you will find in the history of this podcast. While Hip Hop isn’t necessarily an identity, one can make a good argument for being one. I personally will always identify as being hip hop. Black is definitely an identity. That intersection between Black and disabled has its own unique experiences that need to be discussed, even for the sole purpose of centering the experience of Black disabled people in the disability conversation. That’s of real value to me.

Then there are the additional levels of identity. Last year. We closed out YGBD discussing masculinity. We went places I didn’t know we were going, but I’m glad we did.

— Music stops

So this year… (repeats in an echo effect)

— DJ scratch
— Music begins: Snare hits increasing in volume into a smooth R&B track.
R&B crooner sings, “Ladies… Beautiful Ladies!”…
– “Ladies” Lee Field and the Expressions

— Reid My Mind Radio Theme Music

TR:

allow me to introduce you first to Boston based advocate, Heather Watkins…

Heather: 02:20
I self identify as a Black disabled woman, born with a form of Muscular Dystrophy, who didn’t always use mobility aids like I do now. I’ve been using them for the past 15 years including a cane and on occasion a manual wheelchair and also a ventilator to assist compromised respiratory muscles. I am a mother, blogger, author and I serve on a handful of disability related boards and projects including as a former chairperson for the Boston Mayor’s Commission, for Persons with Disabilities Advisory Board, the Disability Policy Consortium, the National Research Center for Parents with Disabilities and Open Door Arts. My pronouns are she her hers.

TR: 03:06
Also joining me today co host of the white stick Connect podcast from Philadelphia, PA, Lisa Bryant

Lisa: 03:12
I’m a Black female, dark skin with locs. And I’m currently a freelance journalist. And I’ve written for few local platforms but also looking to expand my reach, looking at some national opportunities. I was just recently appointed to the board of the Pennsylvania Assistive Technology Foundation

TR: 03:35
Two Black women with different disabilities, each bringing a unique experience of disability.

Lisa: 03:41
In terms of identifying my disability, I struggle with using the white cane but I’ve had to do that a little more of late. I went most of my life without having any difficulty. I was still driving. Then along came 2011 things took a turn and I had to stop driving and adjust to being legally blind.

— Music begins: A piano melody leads into a slow, dramatic groove.

TR: 03:59
If I asked you what does it mean to be a woman? Perhaps you have a list of things that come to mind. Maybe you even strike up with images that represent that. What does it mean to be a Black woman? What comes to mind now?

TR in conversation with Heather & Lisa:
I want to start here with what did you learn about being a Black woman as a child? What were the lessons that you were getting, whether they be from adults in your life, even from the media, like what was sort of the things that you were learning about being a Black woman, Heather you want to start it off?

Heather: 04:30
I grew up in the city of Boston, we lived in a section called Dorchester, which is one of the predominantly Black areas. Roxbury Dorchester Mattapan.

It was definitely a matriarch. My grandmother lived on the second floor. Aunties lived on the third floor. There was always family around. I was surrounded by strong women and bringing that up from the Greenwood Mississippi. All that wisdom sort of poured into me from my grandmother having grown up in the Jim Crow south. She laughed and joked, but she did not play. We didn’t have everything afforded to us. You kind of get inventive? I learned, if it’s not there, we’ll figure it out

TR: 05:11
pretty valuable skill, especially necessary as a disabled woman

Heather: 05:15
in terms of disability an being a Black disabled woman, Across the media landscape, I didn’t see that reflected back in ways that I found meaningful. Flip through beauty magazines, I didn’t see Black disabled women openly identified that way. That message was like, Where are we? Why is that hidden? What I didn’t see in the media I saw within my family.

TR in conversation with Heather & Lisa:
Lisa, same question.

Lisa: 05:41
My family images were very strong women. But I definitely remember as a very young girl, being more influenced by media and even classmates, when I was growing up, dark skin was not necessarily appreciated. We were teased about being dark. I didn’t like being teased. I was an only child, my imagination sometimes got very creative. I had an imaginary friend and she was exactly opposite of me. She was lighter skin, long, long hair. That was just what I did. And that was just how I imagined. I guess the way I sort of internalized that I just accepted that as No, that’s kind of the way it is. I don’t know that I remember even having meaningful conversations with my parents about that. I think I probably just kind of tuck that away. Later on. I thought, wow, how about that kind of self hate.

TR: 06:44
I really admire and appreciate Lisa for being so honest, and sharing that with us. It’s hard being vulnerable, that something only really strong people can do. That hate doesn’t start from inside us. It’s just another tool of white supremacy. A systematic approach to establishing power, by convincing Black people in others of color to feel inferior. It’s anti-Blackness at its finest.

Internalizing negative beliefs. That’s not just about race or color.

Lisa: 07:12
Fast forward to becoming legally blind, like Heather said, When did you see, on the cover of a magazine, someone very proudly, in a wheelchair, or proudly using a white cane?

I had absolutely no one else to relate to until becoming a member of the local NFB chapter. And even those that I did see some of the elderly people like in my church who vision was failing, I was so much younger, and I still had usable vision. So that was just a whole different world, the age I think, alone being like the big kind of barrier. So then it’s becoming a matter of, well, let’s see how we can fake this without making this announcement about my disability. It’s funny how much you just kind of internalize and live through things, and accepted as normal, even though it’s really not.

— Music ends.

TR: 08:13
Actually, I think these reactions are quite normal. I don’t think anyone wants to feel less than, unfortunately, what has been normalized is the idea that beauty is one thing. Disabled anything means inferior.

We can keep on with other things like age, gender…

TR in conversation with Heather & Lisa:
I’m wondering whether your experience with disability, how did it impact the definition of Black womanhood? Can you talk a little bit about that?

Heather: 08:38
Sure. I think it definitely evolved. So when we talked about disability, what back then we would say, quote unquote, handicapped, your handicap, but your healthy. So it was spoken about like that. The exposure that I got, regarding disability at that time was through MDA camps, Muscular Dystrophy Association camps, and like clinics. But still, I wasn’t seeing all the Black disabled kids. I saw maybe one during summer camps.

TR: 09:09
Every summer for about a week, Heather, as a child would stay at these camps for children with muscular dystrophy in the New England area, a chance to get away from the city environment.

Heather: 09:18
It was just like one, or maybe another person who was of color, or certainly only like one Black kid. And the messaging there too, was like, I have to go outside of my community to see other kids with visible disabilities. It was hard to really connect and have that kind of support system where you can connect with other kids in peers, who are disabled to talk about your life experience, but also to talk about frustrations because that’s important to getting tips and resources. Those weren’t things I discovered until much later in advocacy circles, so important in terms of building your own self awareness and even sharpening your advocacy skills.

TR:10:04
As a child Heather never really had the chance to form any sort of relationships with other Black disabled children.

This reminds me of the time in 2020 when clubhouse was new, and the 15 Percent Club was rockin. We hosted an event to discuss Black disability experiences. There had to be 30 people or more predominantly Black. Read my mind radio alum and CO producer of the first YGBD episode, AJ Murray famously remarked that it was his first time being in the presence of that many Black disabled people. There were several others who acknowledged it being their first time as well.

Lisa: 10:40
I had a similar experience when I went to a national convention. So this was 2019. I knew of other Black people in the Federation who were blind, but I had never been in the same circle with them. That was the first time and it was like, wow, I went a long time without really having anyone else who got me not just being female, not just being Black, but being visually impaired female or Black, or at least two of the three. It was a long, long, long, long time.

Heather: 11:15
What if we were exposed to cultural icons in grade school, who had disabilities? How that might have shaped and impacted our awareness? I’m talking about like Fannie Lou Hamer, and Harriet Tubman, Brad Lomax Sojourner Truth, all of them had disabilities, and it also impacted their life, how they govern their lives. Imagine learning that at such a young age or even being newly disabled, how that would shape your awareness and your concept of disability.
We get so many messages that downplay or erase disability because people generally assume that it’s synonymous with negativity. It has a much wider lens, it’s actually very comprehensive.

TR in Conversation with Heather & Lisa: 12:01
Heather’s describing what we mean when we talk about disability isn’t what you think it is.

Consider how disability is talked about. Often from the perspective of a diagnosis. It’s used as a metaphor, often to indicate negativity:

— Music begins, melodic, dramatic strings…
TR in a mimicking over dramatic voice
“, she was blind to what was going on around her.”
TR in a “Financial commentator” voice
“That will cripple the economy.”

Heather: 12:20
Who would I be, without having a disability and the evolutions and the twists and the turns and all of the folks that I’ve met in advocacy circles, especially diverse advocacy circles, who really has been a mirror for me, in validating that and raising that ceiling, where I was often capping my own potential.

So I often like to say I’m a woman in need of care, a caregiver and a community builder, all at once. But if you redact any part of that bio, then you reduce my community contribution, and visibility. It impacts every aspect of your lived experience in determining key quality of life areas. housing, health care, education, employment, how you live, how you shop, dine, socialize,

— Music fades out.
— Sounds of a woman walking down busy city street.

TR: 13:15
let’s get into these lived experiences, beginning with relationships.

Lisa: 13:19
I was walking down the street with my cane, and I just kind of had an image of myself. And I just had a thought, Well, I wonder what attention I don’t get now because of this cane.

TR in Conversation with Heather & Lisa: 13:33
So you walking down the street looking cute. You got the white cane? I don’t know what your status is dating, married, not sure of your status. But how has it affected that part of your life?

Lisa: 13:45
I have not been actively dating. So I’m not on any kind of dating website or anything like that. There’s certain places where I’m very familiar with my surroundings, and I may not have it right out. The sort of compliments or whatever I make it. I don’t think I had the cane.

TR in Conversation with Heather & Lisa: 14:05
So they try to holla when you don’t have the cane?

Lisa: 14:08
Yeah.

Sometimes I hear people say, well, blindness doesn’t define you. I know what they mean by that sentiment in terms of, they don’t want it to define you in a negative way. But at the end of the day, it is a part of you. It’s just as much a part of you as anything else about you your name your hair color. So let’s not sort of suppress that. There’s got to be a way to embrace it, put it out there, but in a way that just lets you know, people know like, this is who Lisa is, in fact, it’s an integral part of me because it does define my world. I navigate my world as a visually impaired Black woman. People probably see the ladder first.

Then there’s the cane.

TR: 14:49
The cane we know serves multiple purposes. First, an aid to orientation and mobility.

Lisa: 14:57
It’s just as much for me and my safety. but it’s also an identifier. It’s a way of saying to the world, you may think I see you, but I may not. Or I may only see you til you’re right up on me. I need to accept that it may sort of reduce some dating opportunities. But then, at the end of the day, are those really people I’d want to date anyway. Maybe one day, it’ll actually attract the right guy.

TR in Conversation with Heather & Lisa: 15:25
Heather, what do you think

Heather: 15:27
I was so ambivalent, for a while to use a cane 15 years ago, because I was thinking I was quote, unquote, giving in to my disability, it’s gonna make me appear weak and old. Then it dawned on me that this is a mobility a that is quite liberating. It’s helping me get from point A to point B, giving the nod that yeah, I’m in charge of my life here. I’m not sitting idly by, I’m actually moving and grooving. Those are the kinds of epiphanies and internal dialogue that I had to have, in rooting out that internalized ableism. So much of our gaze comes from a non disabled viewpoint. You’re not even conscious of it until you are and then you’re like, oh, wow, I’m comparing myself to all the non disabled peers and counterparts. And it’s just so self injurious.

TR: 16:23
It’s not only canes and adaptive equipment we use in public.

Heather: 16:27
I especially felt that when I started using the ventilator, and it looks like scuba gear. And I’m like, how sexy is that? Because it feels like a robo breather. I’m like, what partner’s gonna see that as sexy. I had to really think about all of those kinds of things in terms of dating and being attractive to the opposite sex and what that means for me, in terms of acceptance, it goes back to not having those kinds of images across the media landscape where the storylines are informed by disability, from a comprehensive viewpoint, where the person is a love interest, maybe they’re running a business, maybe they are parents, maybe they’re out and about moving around in the world, making really critical decisions. We are starting to see more of those images now. And the first thing I think of is on Queen Sugar. It’s informed by Ava DuVernay because she has lupus. And so Aunt Vy has lupus and is a matriarch, she’s married. She’s a business owner, community builder. When you have those kinds of storylines, mirrored in that meaningful way, you can best believe those get absorbed by people. And then we have new ideas and people can conceptualize disability in a much grander way. I’m thankful for shows like that. Echoing all of those thoughts and the ideas of what beauty is. Sex, sexuality, pleasure, kink? How often do we hear that all juggled in the same sentence with disability? There are quite a few Disabled Parents, including myself. And guess what, those kids, you know, were conceived the old fashioned way.

TR in conversation with Heather & Lisa:
(Interrupts)
Not immaculate conception!

TR, Heather & Lisa chuckle!

Heather:
So we exist.

TR in Conversation with Heather & Lisa: 18:22
So let’s go there.

— Music begins: A slow vibrato synth, leads to snare hand claps and a driving confident Hip Hop beat

You said that being disabled really has informed your parenting? Talk to me about that?

Heather: 18:29
Sure. I had to leave my job due to progression of disability. And that was probably when my daughter was like around nine or 10. I was so nervous about the fact that what does this mean for me? What’s the next step? So I really had to contemplate the trajectory of my life. It was doubly scary for me because I had these little eyes watching you, right? And they absorb everything around them had to get real clear. Take that internal deep dive and figure out, what would you like to do next. And I said to myself, you know, you need to provide a blueprint, an example for how it would be for your daughter, and not that she needs to be at home, but be more empowered to make her own decisions and choices. I just moved very slowly and methodically. I started thinking about what I was passionate about. I was thinking about disability advocacy. I ended up taking a class that the State offers. It’s called the Massachusetts office on disabilities, Cam training class, Community Access Monitor. Little steps I was taking to figure out where I wanted to go next and how I wanted to impact the world. I didn’t just want to instruct her. I want to give you an example. What to do when how to be a person that contributes to your own community. Disability impacted my parenting by being more mindful and intentional about all of my life’s choices.

TR in Conversation with Heather & Lisa: 20:03
How old is she today?

Heather:
She’s 28.

TR in conversation with Heather & Lisa:
Okay, what’s the impact on her life?

Heather: 20:08
She is a very strong willed empowered out and proud member of the LGBTQ community, her seeing her mother be involved in, in advocacy circles. It made her more open to just being herself in a very big and loud, authentic way.

TR in Conversation with Heather & Lisa: 20:30
There’s sort of like an “outness”, about disability.

Heather:
Yeah.

TR in conversation with Heather & Lisa:
I dig it!

TR:
What about the impact disability has on a person’s career?

Lisa: 20:38
That is a very important question. And in my case, it’s just starting to turn around. Before my vision became more complicated. And before I even knew all of the resources, assistive technology, I was a senior development officer at a local nonprofit and doing very well in that. But it just got harder and harder to see my work got harder to see on the computer, I couldn’t drive at night. And some of these one on one donor opportunities would be in the evening outside of the city, which meant small streets, maybe dimly lit, and I just couldn’t do that. I actually ended up mutually separating from that position. And it was a long time before I could really figure out okay, what can I do?

TR in Conversation with Heather & Lisa: 21:34
I have this thing about that question. What can I do? I mean, I know a specific,

Lisa: 21:39
What can I do on a computer? What could I do where I wouldn’t have to drive and I could just get easily to places on public transportation?

TR in Conversation with Heather & Lisa: 21:45
It’s very practical. But there’s a larger question.

Lisa: 21:48
I remember the day when I thought, what do I want to do? I want to do something a little more creative. During the pandemic, I went to school for journalism. This has just birthed , well, maybe rebirth, something altogether new in me. I just think that that writing bug was there for a long time. But just dormant.

TR in Conversation with Heather & Lisa: 22:10
Journalism was a real interest of leases in her college years.

Lisa: 22:14
I just kind of tabled it all those years ago. Although I really did love journalism. I didn’t like the career paths that were available then. So I just went in all kinds of different directions. Now. I can work remotely, I can do human interest stories. I don’t have to cover murders and fires and burglaries. There’s so much more out there. I can cover the nonprofit sector I can write about in justices. I absolutely love it. And I love that I can do something that’s mentally challenging. Sometimes it’s nerve wracking, but I get to talk to people the same way I did when I was in development, because that’s all about cultivating relationships, you have to know how to communicate to all different types of people. So I think I’ve found my fit. However, I have yet economically to be at that level.

— From ABC News broadcast: 23:07
Today marks the day, the average Black woman working full time must work into 2021 to catch up with what an average white non Hispanic man earned in 2020.
Let me Repeat that. Today, August 3, 214 days into the year is when an average Black woman worker will have to catch up to her white male counterparts. 2020 pay. According to the National Women’s Law Center, Black women are paid 63 cents for every dollar made by white men across industries.

— Music ends

TR:
Yet!

Lisa: 23:39
I’m much more fulfilled than I had been in a long time since 2011, when I was declared legally blind.

TR in Conversation with Heather & Lisa: 23:47
I’m just curious, do you see that as an opportunity that was presented by disability?

Lisa: 23:54
I guess the disability has kind of opened that because it’s allowed me to do it on my terms. I could do it from my computer and I could use 12 time magnification if I need to. And nobody has to know you know, I could have my screen reader on nobody has to know. So yeah, yeah, I suppose it has.

TR in Conversation with Heather & Lisa: 24:16
Okay, good. Good.

Heather: 24:18
How many similarities? Wow, I’m a Mass Comm major. My daughter was very young when I graduated. So I was going to go to school full time, be a mother full time, but I couldn’t, you know, add on the internship part of it. So when I left college, I started working for a health insurance company. It wasn’t until years later that I got involved in writing and blogging and doing freelance work like that. Disability definitely impacted that sort of rebirth and rebranding you were talking about being online and using the internet. Hasn’t that been such a great equalizer in that way for so many disabled persons? I’m not only talking about obviously a parent, but not a parent in chronic illness, folks who, for one reason or another may not be able to get to a brick and mortar location for being online, they have access to remote work or flexible hours and balancing work life.

TR in Conversation with Heather & Lisa: 25:15
Meanwhile, there are real benefits for hiring and retaining disabled employees.

Heather: 25:20
So many of us have higher sensitivity levels. Have adaptive and analytical skills, logistical skills like nobody’s business, we know workarounds, contingency plans, so many of us are out of the box thinkers. I tell people all the time, you want disabled folks in your employ, in your planning committees, event committees, your communities, your corporations, because there’s a lens and a lived experience that you’re not tapping into that that asset to your organization.

TR in Conversation with Heather & Lisa: 25:53
Do you see any sort of examples that say, okay, yeah, I see some of this taking place now?

Heather: 25:58
The pandemic, really put that into overdrive, right? So many people were saying, Oh, no, we can’t accommodate you in this way, for remote work and being able to access even entertainment and theater, then all of a sudden, voila, overnight. Everyone has access. So it wasn’t a question of why it couldn’t be done. It just couldn’t be done for y’all!

TR: 26:21
One of several things revealed during the pandemic is the inequity in health care,

Lisa: 26:26
I was thinking of an Article I just wrote on Black women in breast cancer, the death rate is much, much higher for Black women. Nationally, it’s close to 40%, which is ridiculous. So there’s that in general disparity of health care for Black women. But then you add this other layer of having a disability. Now I am in the two worlds.

TR in Conversation with Heather & Lisa: 26:53
That second world, if you will, is this ability.

Heather: 26:56
It’s been 32 years, since the Americans with Disabilities Act signing, we’re still having to advocate so much for the smallest of rights, it really is daunting and exhausting. nearly 62 million in this country identify as having some form of disability, one out of four people 25% of the population, nearly 1 billion globally, it’s a sleeping giant of a demographic that needs a much better marketing plan.

TR in Conversation with Heather & Lisa: 27:28
So when someone who is blind, for example, walks into a medical establishment,

Lisa: 27:32
I generally am carrying my white cane. And it’s amazing to me how they’ll see the white cane and still give me a clipboard. People just don’t get it. They only know this is what I do. I’m the receptionist, this is what I do. You come in you tell me your name, I give you a clipboard. Look, I can’t fill out your little iPad. I know it’s cute. And it’s like the way to go here. But that’s not going to work for me. And there have been times when they’ve been helpful. And there have been times when I’ve been dismissed. Some of the same challenges can be addressed if there were more sensitivity and people to help. Because it’s not only vision, it’s not only physical, their language barriers, there’s not being tech savvy,

Heather: 28:19
lack of cultural competence regarding disability, gender, and race, especially when you have providers who are not very knowledgeable about disability, but also, maybe the hospital or healthcare setting is not outfitted for receiving you in a very physical and literal way. Maybe the doorways aren’t wide enough, maybe you can’t access the bathroom because it’s inaccessible. Or if you’re someone like myself, who had difficulty getting on the exam table, because you needed a hydraulic one. And so you had to forego your GYN exam, because you couldn’t access the table that resulted in me filing a complaint with the patient advocacy department. So the next time my follow up visit, that hydraulic exam table was there because along with that complaint form, I included a copy of the part of the Americans with Disabilities Act. That said I had a right to accessible medical care.

TR in Conversation with Heather & Lisa: 29:16
So you have to advocate just for you to go to the doctor and give them money.

Heather: 29:22
Had to do it more than once to a different providers office. You’re not always believed, so many stories of pain management, managing the variety of disabilities, whether they’re a parent, not a parent or include chronic illness, we should all have the right to have medically accessible care that is done with culturally competent providers.

TR in Conversation with Heather & Lisa: 29:43
That’s medical providers that are not only familiar with the differences, but also value them. That’s reflected in process policy and services.

Heather: 29:52
When I was younger, I was only considering apparent disability and our families. How many of us have died At heart disease, I have died from complications of diabetes. My father, he ended up dying of kidney disease. I took care of him for the last 11 years of his life in our home, just an interdependent relationship, because he’s helping me physically. And I’m helping manage his entire health care, all while raising a daughter. And then also having my nephew come into my home through a DCF kinship placement, Department of Children Family Services placement as a older teenager who had intellectual disabilities.

So many of us live interdependent lives. And when juggling so many responsibilities, we are practicing those kinds of advocacy skills in real time. That’s the real commentary for a lot of Black disabled women.

TR: 30:47
All you have to do is follow disabled Black women on social media. And you’ll know that we’re just touching the surface of the many challenges they encounter on a daily basis. And yet, they see hope.

Lisa: 30:59
The small things can mean a lot. I have had to say that I’m visually impaired I use assistive technology. I’ve got well, how can we accommodate? Do you need us to send you things in some other file? I went through a seven month long Fellows Program for journalists, and they were absolutely wonderful. Like they just insisted that like, look, we don’t want this to stress you out. It’s not as off putting, as it used to be.

I said earlier, I had to leave my job. Because they just didn’t know what to do with me. It’s really changing for the better. I mean, you have media platforms that are exclusively devoted to people with disabilities. Are we there? Absolutely not. But there is hope.

TR in conversation with Heather & Lisa:
Cool.

Heather: 31:45
I love it when I’m able to connect with more Black women with disabilities, whether it’s a parent non apparent or includes chronic illness, if their parents, whether they’re into the creative arts, I love being able to connect with them and just learn more about their lived experience and how that evolved over time. Because I always feel like I learned every day, that helps me, in my own self awareness, become a better advocate

— Music begins: A melodic synth piano opens to a inspiring mid temp heavy kick Hip Hop beat.

TR: 32:15
today, passing those lessons on to others.

Heather: 32:19
It wasn’t until I got heavily involved with repeat exposure that I began to deliver how vast and wide that disability is, there comes a culture of political movement, history constituency, there wasn’t an indictment. It’s an identity marker. And even the word itself, disability, the di s prefix is not only not an option, but has a Latin and Greek derivative, meaning dual into so hence another way of doing and being in the world, and so much easier to adopt that first person language and say, Black disabled woman. This is why there will be no ambiguity in that meaning, because I’m not shying away from any of those things. You know who I am is the amalgamation of all my choices. And that doesn’t mean that I’m glossing over any frustrating aspects of disability because for sure, they are there to give a full bodied expression in meaning of what it means to live with a disability to have a disability or to be disabled. It is a very comprehensive, layered experience.

TR in Conversation with Heather & Lisa: 33:33
Full bodied expression. That’s what I’m talking about. Can you handle all of this greatness? Now I need you all to check out and support our sisters. That’s my fellow Libra. The new addition to the Reid My Mind Radio family from Boston. You see how I did that? New Edition, Boston.
— “Cool it Now” New Edition

Heather: 33:56
My website’s SlowWalkersSeeMore.com. So that’s like my condition and my personal mantra.

TR:
Facebook, Twitter and IG.

Heather:
at h Watkins nine to seven.

TR in Conversation with Heather & Lisa: 34:10
You can find Philly’s finest Lisa Bryant on Twitter and LinkedIn.

Lisa:
@ByLisaBryant

TR in conversation with Heather & Lisa:
Appreciate y’all for coming here and sharing your experiences. And you know, that makes you official, members of the Reid My Mind Radio family. So salute y’all, I appreciate you.

Lisa: 34:28
Thank you, Thomas. This is great.

TR: 34:31
Big shout out to all our sisters out there doing your thing. In fact, that’s how we began 2022 doing your thing with disability. We then had to flip the script on audio description. You know how we do it. And by the way, don’t forget to check out this year’s ACB Audio Description Awards Gala, hosted by yours truly. This year. I’m happy to say I have a co-host one of our Reid my Mind Radio family sisters and alumni, Nefertiti Matos Olivares, who is also providing audio description. We had some fun filming and I hope you all check it out. No spoilers. It drops on November 29 2022 On Pluto TV and of course ACBADAwardsGala.org.Check the site for times and official information.

So this is the last episode of The Year y’all but I feel like spreading some holiday cheer this year. So make sure to keep a watch out for a special episode. The best way to do that is to make sure you subscribe or follow wherever you get podcast. And we have transcripts and more at ReidMyMind.com.

All you got to do is remember it’s R to the E I… D!

Sample: “D and that’s me in the place to be!” Slick Rick
NS be in a place to be
TR:
like my last name!

— Reid My Mind Radio Outro

TR:
peace

Hide the transcript

R: 00:02
Greetings Reid my Mind Radio family.

If this is your first time here, allow me to welcome you. My name is Thomas Reid. I’m the host and producer of this here podcast. We’re in the final half of what is our last season of 2022.

We call it Young , Gifted, Black and Disabled.

Music continues: … opening into a mid-tempo groove supporting the melodic flute.

By coincidence, my guest today, like our prior guests, Haben Girma is also deafBlind. As we know, disability falls on a spectrum and is experienced differently by each individual.

Hearing two different Black deafBlind experiences. Well, that’s just going to add more dimension to the conversation. Keep that in mind as we get into it. Let’s get it!

Audio: Reid My Mind Radio Intro theme music

Marc: 01:03
well, my name is Marc Safman. I’m a light skinned Black man with black, gray at the temple hair, and I typically wear my glasses, but I’m not wearing glasses, and a blue t shirt. Got a blue background behind me. I’m considered sighted deafBlind.

TR: 01:20
at 16 years old Marc underwent acoustic neuroma brain surgery. In addition to auditory processing challenges, the surgery left him deaf in his right ear, he began experiencing progressive vision loss about 10 years later, and is now legally blind.

Marc: 01:34
I’m kind of like, okay, I’ve just got to find ways to do that. And enjoy what I’m looking at in the world, what I’m hearing in the world are people who take the time to give me the time to take my phone out.

TR: 01:47
Marc uses Google transcribe the speech to text that enables him to understand exactly what a person is saying. With magnification. He’s even been able to function using pen and paper to interact with others. Yet, as you can imagine, there are some real challenges

Marc: 02:02
a lot of the issues about my disability was kind of like, well, you know, you get older, and you really understand yourself a little bit more. You understand how your disabilities were impacting you, you understand the solution. And then you see the problems that I face; staying employed, interviewing, just trying to socialize with people where you really can’t hear, or you really can’t see someone looking to make eye contact with you.

TR: 02:27
We’ll see just how that difficulty socializing impacts all aspects of a person’s life. marc’s either an optimist or he just has a good sense of humor, to note the benefits?

Marc: 02:38
Some people try to engage me with the point of mugging me. And I’m kinda like “sorry did you say something?” They say something snippet, I’m saying “I’m sorry I don’t hear very well so I have a hard time understanding what you’re saying. “And they walk away.

Audio from “Running Scared”
Mugger: Give me your money.
Potential Victim: “What?”
Mugger: You heard me…

TR in conversation with Marc: : 02:52

(TR & Marc Laughing)

that’s a good defense.

TR: 02:57
In addition to what I’m gonna call the ableist muggers, sometimes those who walk away are potential employers, being deaf can make interviewing a real challenge, especially when the interviews consist of multiple people asking questions, Marcs access accommodation doesn’t always suit potential employers,

Marc: 03:17
I’m a Paralegal and I work in anti-money laundering compliance, Thomas, so I deal with people in financial services typically don’t like to write things down. There’s nothing you can do. And I feel like also I had interviews where, I would have to name them, the National Bank of Pakistan, these kind gentleman took turns sitting next to me, talking in my ear, and writing things out very patiently. Not one of them had a problem. People who make the accommodations, they’ll go out of their way to try and help you while you’re on a job. The people I used to work with were some of the most excellent people on the planet. The technology was not as developed back in 2006 2010. They would all routinely just talk or write things out for me.

Music begins: A piano melody with jazzy horns leads into a melancholy groove.

TR: 04:04
Sure, we all can appreciate those who just seem to automatically get it. They may not know the right thing to say or do but they connect on pure humanity. They’re open to communication and want to succeed with others.

Marc: 04:19
You will learn on the job that there are no laws protecting disabled people, employers, they frequently have a mandatory arbitration clause. Everyone knows that it’s a very formal. You have to go through the EEOC and typically the EEOC will probably reject your case and tell you to go file a lawsuit. And that is very long, lengthy process. New York City Human Rights Commission from my experience has not been very helpful. They have declined to prosecute multiple situations. They have rejected what they consider one off situations. I submitted the same freaking complaint with so many different companies trying to access CART, or the real time captioning open captions at events for various professional or cultural events.

TR: 05:07
CART, or the human generated real time captioning is a must for Marc and others at networking events, conferences, community forums. They can feature multiple speakers often slide deck presentations or references to other visuals. Therefore, context is very important to truly understand what’s being transcribed. It’s not accessible through an apple auto generated captions. Marc says there’s no real help and even convincing organizations that they are indeed supposed to provide this access

Marc: 05:36
The Mayor’s Office on Disabilities here in New York City has one of these useless programs where they will contact an organization and say the accommodations are the law. But if that organization just says, Hey, no, we’re not going to do it. MOPD turns around and says, Well, now you can file a complaint. I have filed complaints and they take multiple years to resolve with simple CART text to speech complaint.

TR: 06:01
Even when he’s been invited to attend specific functions and asks for the accommodations CART is not provided. There are loopholes that basically allow organizers to put the responsibility on others like the event venue, who end up ultimately pointing the finger back at the organizer. Meanwhile, Marc not only request CART Services, he’s prepared with the names and contact information for providers,

Marc: 06:28
all you need to do is contact the vendor. I don’t care if your host doesn’t know what they’re doing. That’s not your host’s obligation. All these organizations will punt, and the law’s so vague, the Division of Human Rights Law hopefully clarify that. I’m not settling out of court with these folks

TR: 06:44
doing so wouldn’t benefit the community.

Music fades out.

TR: 06:51
Marc has enough usable vision where he can often read with the help of magnification. He knows basic Braille and advocates for its wider availability, and points out where once again, the deafblind community is being left behind.

Marc: 07:04
Blind groups have prioritized ballot Marcing machines, or having accessible ballot through screen readers. And screen readers are totally unhelpful if you’re deafBlind.

Synthetic Voice: ” Synthesized speech won’t help someone who is deafBlind!

the blind community that I’ve encountered here in New York has been very reluctant to embrace Braille ballots. I’ve been pulled directly by other advocates that they feel that requesting a Braille ballot would be a negative experience for someone. I don’t see how there would be a pejorative guilt trip or make anyone feel like they’re being singled out. Braille is critical. Braille ballots are critical.

TR: 07:46
While Braille isn’t considered a technology solution, there is a technical component with electronic braille displays, which makes CART also accessible to Braille readers. As we know the true barriers for those with disabilities are human made. Consider the mobility challenges for those who are deafBlind. Yet the CO navigator or support service provider is a program that can greatly impact the community.

Marc: 08:11
There’s a strong preference for Co-Navigator, as the term.

Co-navigator helps the deafblind individual with mobility, running errands, helping the person conducting transactions, shopping or whatever

TR: 08:25
sounds like the benefits could even extend to help reduce some of the challenges like employment, community involvement, and social isolation.

Music begins: A slow, driving haunting groove

Marc: 08:34
It is incredibly offensive that We have a governor and a state legislator that basically doesn’t care. Hearing professionals, nonprofit groups are well aware of the importance of the CO navigator program, they have done absolutely nothing. The National Association of the Deaf has done nothing. ESOD here in New York, their state affiliate, they do nothing ACB, NFB, nothing!

TR: 08:57
I have to say I haven’t verified this.

However, I do know that during my own time spent a bit more involved with blindness organizations. I can’t recall much in the way of advocacy for deafBlind specific issues.

In all fairness, Marc did include the AFB in what I believe is, a call for action.

Marc: 09:18
If they did something well, it’s like, I think we would have a program already.

TR in Conversation with Marc: 09:21
if the blindness organizations and the other organization was to get involved. What exactly is the involvement that’s necessary? We’re talking about more folks advocating for it? Or is there something very specific that they’re not doing that they could do?

Marc: 09:38
Helen Keller National Center cannot advocate because of their federal funding.

TR in Conversation with Marc: 09:42
Okay.

TR:
I think he’s looking for advocacy. And maybe that’s not actually a lot to expect from advocacy organizations, especially considering what happens when many in the deafblind community try to participate in community or political events.

Marc: 09:57
You really have a hard time participating when you can’t get the electeds to make accommodations at their events, they don’t care. There’s a fear of disabled people still, and it’s deep. And it’s one of the reasons why, even within the progressive political community, people won’t touch it. Because they don’t think that there’s votes in the disabled community.

Music ends as if highlighting the next statement.

And they don’t realize the voting bloc power that is growing.

TR: 10:24
that block can be really effective, especially with solidarity, disability, solidarity, that means recognizing that you and your specific disability doesn’t truly win. Unless we all win. Along with recognizing other disabilities. That also means the multiple intersections that we bring, so called race, gender, sexual orientation, etc., etc. With this in mind, I asked Marc, a very specific question around representation.
TR in Conversation with Marc: 10:44

any conversation amongst the deafblind community about Helen Keller, in terms of representation in the media? If there’s anything about deafBlindness, it’s always Helen Keller, and I’m just wondering, do you have any thoughts about that? Is there any sort of discussion about that any feelings?

Marc: 11:10
Some people have concerns about she was from an upper middle class, Southern aristocratic family. However, it does have ties to the Confederacy, I understand that she would have to be from a very well off family in order to have a private tutor. She’s elevated for commodification. It overlooks the fact that Helen Keller was a radical, and very much advocate of workers’ rights, women’s rights. She was not a weak woman. She was a pretty strong willed individual who spoke her mind very clearly. And pissed off a lot of people,

TR: 11:43
the way Helen Keller story is told, often doesn’t present the nuance within her own life. More importantly, that simplification allows us to not consider others who are deafBlind people who are deafBlind.

Marc: 11:54
People just want to latch on and commodify things and oversimplify things so that they don’t have to think.

When people say their disability diversity consultants, they simply don’t actually understand the accommodation, or the needs or interests or concerns of the community, they just talk about these very vague solutions. They do these LinkedIn hashtag strategies, that really doesn’t help inclusion. you’re playing along with a narrative that’s controlled by neoliberal elites, not people. It’s only through challenging the elites, and demanding on meaningful laws, programs and services that respect individuals for their humanity.

CO-navigator services, providing Braille ballots, Braille literacy, eliminating tokenism.

Why don’t we have accommodation Jobs Centers that the government could just basically simplify this for all business efficiency. We have the solutions, you have no excuses for denying opportunities to people just because they need accommodation.

TR: 12:59
As a society, we seem to be okay with accommodations that are easiest for us. And too often the undue burden is put on the disabled person. It’s like we fail to see the value of accessibility,

Marc: 13:12
that allows people to live an independent life without having to rely on family and friends.

Music begins: An upbeat, feel good, inspiring horn melody opens to a fun and cool Hip Hop beat.

TR: 13:21
I’m always reminded that an independent life should be dictated by the individual, what constitutes an independent life, for me, may be quite different for you. And that’s fine. Similarly, this individual approach applies to access.

Marc: 13:37
So even if you have a solution, the solution still needs to be tailored to the individual. And that is the tricky part.

As Andrew Cuomo demonstrated, in his covered briefings when he was refusing to provide in frame ASL, he can’t just assume that just because someone’s deafBlind, doesn’t mean they’re the same type of deafBlind. I don’t need pro tactile. You providing pro tactile interpretation, it’s not going to help me. The CART solution is not going to help another deafBlind individual. So you can’t say, Well, I provided ASL.

Music continues…

TR in Conversation with Marc: 14:12
Tell me a little bit about what you like to do when you’re not doing all of the advocacy.

Marc: 14:19
Well, I like art. I take a lot of photos because, well, it helps me see things. You’ll end up taking like a lot of photos. I don’t necessarily see what I’m looking at until you look at the photos.

I like going to opera, sporting events. I love baseball, hockey, soccer. Well I’m not tall and I’m not a big guy, so I’ve never went out for football and I’ve never tried basketball.

TR in conversation with Marc: 14:38
You used to play baseball?

Marc: 14:41
Oh, yeah.
I used to play shortstop, third base. I’ve been on the all-star team a few years.

TR: 14:45
That’s sort of how I like to think of my guests, all stars, or as I tell them all here on the podcast; official!

That’s right Marc, you’re an official…

— Airhorn

… member of the Reid my Mind Radio family Brother.

If you want to reach out and connect with Marc, you can find him on LinkedIn.

Marc: 15:03
That’s probably the best way to reach me. My name Marc saffman,
(spelled out) M A R C, S like Sam, A like apple, F like Frank, M A N.
TR: 15:15
I met Marc on Twitter. I can tell he’s a persistent guy, just by the way he followed up with me.

He continues to contact and schedule meetings with elected officials from local to federal. He shows up for council meetings and continues to request access. He follows up when the access isn’t granted.

He’s an advocate.

And as we know, there’s all types of ways to advocate and inform…

In fact, I’ll ask you to advocate for this hear podcast. All you need to do is to tell a friend to tell a friend that they can find Reid My Mind Radio wherever they get podcasts.

Transcripts and more are at ReidMyMind.com.

And as all good advocates know,
That’s R, to the E, I,… D!

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

TR:
Like my last name.

Audio: Reid My Mind Radio Outro

TR:
Peace

Hide the transcript

TR in Conversation with Haben: 00:03
Good afternoon. How are you?

— Music begins: A celebratory synth opens a cool energetic Hip Hop beat.

Haben: 00:07
I’m doing well. I wanted to pause and explain communication. I am not hearing you. So I have a typist typing what you’re saying. I’m reading it in Braille and then responding by voice. So if you notice a delay between when you say something, and when I respond, that’s because the typing is coming through.

TR in Conversation with Haben: 00:32
Okay, I wasn’t sure if you made use of the captions if they come through a Braille display. That’s good to know.

Haben: 00:46
So some podcasters, edit out the delays. Some keep them in to make it part of the experience. You can choose what works best for you.

TR in Conversation with Haben: 00:58
Excellent. I do a significant amount of editing anyway, just to make it an easy. Listen for folks. I can always include this as part of how we communicate it. I think that’s interesting.

Haben: 01:10
So are you recording right now?

TR in Conversation with Haben:
I am.

Haben:
Is it okay, if I ask you questions?

TR in Conversation with Haben:
Absolutely.

Haben:
Excellent. And then one last thing regarding accessibility. It does help if you slow down.

TR in Conversation with Haben: 01:26
Okay, very good. That would be great, because I should slow down anyway. It’s that New York thing. So let me know if you’re ready to start. We can go from there.

Haben: 01:42
Go for it!

— Repeats with a echo effect.

— Reid My Mind Radio Intro Music

TR: 01:58
Joining me today on the podcast. Well, President Obama named her the White House Champion of Change. She received the Helen Keller Achievement Award, a spot on the Forbes 30 under 30 List and time 100 talks. She’s a disability rights lawyer, speaker and author honored by heads of state all around the world. Now she’s with us. Family. Haben Girma.

Haben: 02:22
I’m in my 30s. I’m a black woman of Eritrean and Ethiopian heritage, long dark hair, hazel eyes. I am deaf blind, and I’m using a Braille computer and keyboard for communication. So what you’re saying is coming up on my Braille computer, I’m reading it, and responding by voice.

TR: 02:45
If you’re listening to this podcast, I’m pretty sure you heard of Haben. Perhaps you read her memoir? If not, I highly suggest it. The book is titled Haben: The Deaf Blind Woman who Conquered Harvard Law. It was featured in The New York Times, Oprah Magazine, the today’s show,

Haben: 03:02
I read my book out loud, using braille to create the audio recording. So I narrated my own book. And I’ve heard that it can be tricky for a lot of blind people to do that, because Braille literacy is still growing. And there’s still so many struggles to gain access to Braille. That was a fun and really moving experience to be able to read my own book, and have that recorded.

TR in Conversation with Haben: 03:35
I read your book last year. I’m not a proficient Braille reader. I became blind about 19 years ago, I do audio description narration and so I use my screen reader as sort of a audio teleprompter to do narration, but know of some blind narrators who use their braille display to do narration.

Haben: 03:54
I’ve also heard of blind authors using their screen readers as prompts, so listening to their screen reader and then voicing in their own voice, when doing an audio recording of their own book. Did you listen to the audiobook or another format?

TR in Conversation with Haben: 04:14
Yeah, the audio book from Audible.

TR:
It’s also available via the National Library for the Blind

— Music Begins; a hard kick drum and piano chord drop together, leading into a driving Hip Hop beat that hints to West Coast Dr. Dre style production.

Various anonymous people on stage04:25
Clips of varying people providing self-description play over the beat.

– “:And I have wavy dreadlocks”
– “I am a Latino woman.”
– “My pronouns are she/her, I’m a White Jew”
– “Half Croatian and a half Moong”
– “. I’m Black with a capital B”
– “Hi top Vans like the pop punk princess I am.”
– “kind of Kurt Cobain meets David Byrne vibes.”
– “I am wearing a white corsets that my mom handed down to me.”
– “My name is Goldilocks. I defy gender.”
– “I am wearing a look of like fear as well.”
– “My name is Sophia Chang, as you heard, I’m the baddest bitch in the room.”

TR: 05:04
This is the topic of my conversation with Haben. Self description.

Haben: 05:09
said, Thomas, my very first question is, what’s the reasoning behind asking me to do a visual description on a podcast?

TR: 05:20
I thought I was the host of this podcast, it’s my job to ask the questions. Haben came prepared? And honestly, I’m not mad at all.

TR in Conversation with Haben: 05:26
Very good question. So as part of a podcast, we have to make podcast artwork available. That’s a part of the requirement for putting a podcast on Apple, iTunes, and whatever they call it now. So when folks do receive the podcast in the digital format, there’s artwork that accompanies that. I’m not doing anything significant about the artwork. But that is part of it. I will ask you to provide at some point, before I publish this episode, an image file. And usually that’s a headshot. That’s part of introducing folks to the self description, because sighted folks do actually get that from a podcast. The other reason is, because it’s something that I feel is relevant to a conversation is the identity of a person. Rather than me kind of noting someone’s identity, I like to ask people to share whatever identities they want to share about themselves. And that’s part of the self description.

Haben: 06:34
So there have been so many conversations about this, particularly in the last few months. And some of the questions are about which identities do we amplify? And which do we choose not to share? Because all of us are multitudes? We have so many identities? Do I share that I’m a dancer? Or do my share other characteristics? Do you give any guidance on which identity is people should be sharing?

TR in Conversation with Haben: 07:08
No, I don’t. That’s interesting that an identity for you is possibly a dancer, I’ve never heard anyone say that being a dancer is a part of their identity. I leave it up to the guests to share whatever it is that they like to share about themselves.

Haben: 07:24
All right, and because you have done so much work around audio descriptions, I want to lean into that. And I know a lot of sighted and blind people struggle to answer this question. Because there are so many judgments made in a sighted world in a visual world. And when you self describe yourself, if you are feeling uncomfortable, or awkward about some of your identities and traits, do you take the easy route and just not share it? Or should we offer people guidance and urge them to share some of those identities, even if they feel awkward and uncomfortable about it? Because it’s part of access. So like you said, there’s a difference between describing one of your identities as a dancer, versus your eye color or hair color. So I feel like as a community, it would be super helpful if we provided more guidance on how people should approach identification. So we have lots of different identities. But when it comes to visual descriptions, there’s certain visual traits that are visually accessible to sighted people. And if we’re sharing artwork that shows those traits. We should have a structure for our visual descriptions that will ensure accessibility, access to information while also preserving freedom of expression, creativity, and giving people the choice to share which identities to highlight

TR: 09:24
specifically on the podcast. I don’t usually give much guidance. I think that’s probably because most of my guests are familiar and comfortable with the process. However, I do want my guests to share their color ethnicity, along with a bit more about their visual presence. While I do believe that we should try to get people to share as much as they want with the guidance for access issues. I’ve also been in a situation where describing themselves was a trigger. I was in a meeting of about Eight people and one person was trans. They said that it was a very triggering thing for them to describe themselves. And I was the only blind person there. I immediately said, I did not want them to feel uncomfortable. So was that an access issue for me? No, there’s no way I could be comfortable with accessing that information, knowing that it made that person uncomfortable.

— Music ends: A slow reversal of the beat as if leading into the following statement.

Haben: 10:28
Safety is a huge piece of this conversation. So we need to try to create safe spaces where people feel comfortable sharing this information. And if they don’t, even a space that has been attempted to be safe. Sometimes we just need to say, okay, you don’t need to share.

TR: 10:51
Another piece of this self description conversation that also comes with a bit of controversy is pronouns. Now I get it when people have difficulty remembering which pronoun to use. I’m in my 50s. I grew up with he and she, but I also grew up getting chased out of neighborhoods, because I’m black. You get what I’m saying? There’s all sorts of discrimination.

Haben: 11:11
I feel like we should also have conversations regarding should age be part of the description. A lot of sighted people who look at a picture kind of subconsciously assume the age of the person. And a lot of our visual descriptions that are happening right now, often don’t include age. How do you feel about that one?

TR in Conversation with Haben: 11:36
That’s an interesting one. A few years ago, before my beard, became more salt and pepper, it was Microsoft seeing AI, I took a picture of myself. And it described me as a 32 year old and at the time, I think I was 49. When I took that picture.

Haben: 11:56
Were you pleased?

TR in Conversation with Haben: 11:58
I was very pleased. And I tell this story a lot.

TR:
Ain’t no shame in my game. I will eventually tell this story again. In fact, let’s see what the awesome seeing AI app says today. Open Microsoft seeing AI app.

— Sound processing along with Apple Voice Over going through the process…
Menu, quick help button recognizing English channel, adjustable…

“one face near center take 34 year old man wearing a hat and glasses looking happy”

34… laughs…

TR in Conversation with Haben: 12:27
So now, I forget the salt and pepper beard. I might say I have a beard, but to describe it as salt and pepper is not something that I’m used to because I’ve never seen myself with a salt and pepper beard. So I often end up leaving that out.

Haben: 12:46
Right? Right. So you can always make assumptions about someone’s age, based on the color of their hair. So one could go all the way and just say I Yeah, insert number years old. And then there’s the question. Is that too much information? Should you just share what is visually accessible? And someone could be older, but actually look younger? Or they might be younger, but actually look older? So do we provide facts or just visual access? And if we want to try to remove harmful assumptions, maybe providing facts and stating the exact age? How you identify would be more helpful, rather than leaving room for assumptions.

TR in Conversation with Haben: 13:49
Yeah, but then there are so many other things right? So especially if we think about the corporate world, revealing your age, could really impact your position,

Haben: 13:59
right! Because there’s lots of age discrimination. We could also go back to all the other crates and say, you know, there is sexism, there is racism and ableism.

TR in Conversation with Haben: 14:11
I think it should be left up to the individual to share the things that are visible, that they feel comfortable revealing. I think that’s a start to a guideline for me.

Haben: 14:25
I agree. That’s a great starting point. Over the last year or so there have been lots of discussions about visual descriptions. And one of the biggest complaints is that a lot of them are poor quality. Because people are struggling to figure out, what do they describe, and they’re feeling anxiety and stress over what do I describe? How much to describe? So telling people share what you’re comfortable with it As a starting point, but at this point, a year in, many years for others, who’ve been in this conversation for much longer, I think it’s time to have a more detailed guidance.

— Music begins, a dramatic repeating piano loop, followed by a hi hat lead into a mid temp Hip Hop groove. that

Haben continues:
How much to share what to share, how do we best model visual accessibility, while being aware of racism, sexism, ableism, ageism, and the other forms of oppression?

TR: 15:31
No one is saying this has to be a mandatory function at every gathering. Guidelines, quite honestly just helped make it a smoother process,

Haben: 15:39
so that people who are new get a sense of what to do. And people who have been in this a while can fine tune and improve their image descriptions. And guidelines would help people be more succinct in their descriptions. If we could give guidelines to limit it to one or two sentences, for example, that would help people keep it short. So many of the complaints about self descriptions are due to the fact that a lot of people are struggling and don’t know what to share and what not to share guidelines would help with that,

TR: 16:16
in my opinion, those are all constructive complaints. When I hear someone say, well, it takes too long. I infer that means it would be cool if it was quicker. But not everyone is constructive.

TR in Conversation with Haben: 16:23
What about the idea that, what someone looks like or what someone is wearing, has no importance? How would you respond to that?

Haben: 16:37
Then turn off the video, turn the lights off, if it really doesn’t matter.

TR in Conversation with Haben: 16:44
(Thomas chuckles!) I like that very succinct.

Haben: 16:47
You’re welcome. (A big smile in her voice!)

TR in Conversation with Haben: 16:49
I’ve heard folks say that it’s a performative act, it does nothing to enhance the access for blind people,

Haben: 16:56
there are different degrees of performance, if you are going on stage to do a presentation you are performing. So to an extent we have to accept that self description is a performance.
If you turn on your camera you are performing. So we need to accept that part.

— Music ends: The beat comes to an end with a DJ scratch to emphasize the next statement.

Haben:
The response as in an earlier response, give guidelines so people can do better. There are already so many blind people who have said they appreciate visual descriptions. There are people with other disabilities who are sighted and also appreciate visual descriptions. And there are people who identify as non disabled, who also appreciate self descriptions, because it helps with so many unconscious biases when people are open about self describing.

TR: 17:51
I wrote an article for the Disability Visibility Project on this subject earlier this year titled, “Making the case for Self Description: It’s Not About Eye Candy.” I’ll link to the article on this episode’s blog post.
And shout out to Alice Wong.
By the way, if you haven’t read her latest book, “Year of the Tiger”, what’s wrong with your life?

Voice of Marlett, with an audio effect that simulates being heard in one’s head:
“Maybe find a gentler way of saying that!”

TR: 18:18
Did y’all hear that? That’s my wife’s voice I hear in my head every now and then when I want to make a point. Okay, maybe that was too rough. I just want us to support her work, it’s a really good book. And the audiobook narrator is on point…

The article is framed as a response to a piece written in the NFB Braille monitor. I counted the so called argument made by the author, honestly, most of it gave me the impression that he was trying to do a bit of crude stand up. But the main point I think I always come back to on this subject…

TR in Conversation with Haben: 18:43

My problem with the folks who are calling to abandon this process is sort of tied to what you just said.
That there are a lot of people who already recognize it as access. And if it’s access for one group, why should any part of the group try to take that away? Why isn’t the conversation around improving it? And so in addition to the guidelines, how can we go about improving this process?

Haben: 19:25
We can improve it by tapping into voices, listening to voices of people from underrepresented communities, because I’m worried about people of privilege, deciding that there’s no value in self descriptions, and deciding to take it away.

TR: 19:48
At the time of my conversation with Haben. I was unaware that some members of the NFB were proposing a resolution to discourage the practice of self description.

Haben: 19:57
But thankfully, members of the NFB many members of color, I believe, advocated to remove that resolution that would have discouraged it. So I’m deeply fascinated with guidelines for visual descriptions. I haven’t found a good one online yet. And I’m hopeful that this will be led by blind individuals from underrepresented backgrounds, religion, disability, as in blind people who have other disabilities like deaf blindness, blind people of color, trans LGBTQ, blind people from underrepresented backgrounds should be leading the creation of guidelines for self descriptions.

TR in Conversation with Haben: 20:45
Well, that’s a fantastic point. It feels as though the negative response, the call to abandon self descriptions, that comes mainly from folks who are not of color.

Haben: 21:05
(Begins with a laugh)
I have had similar thoughts. And I feel like it’s people who have a lot of privilege and are concerned they may lose their privilege, lose keys to the normal, cool club, if they speak up about issues that certain communities find controversial, like race and other things that should not be controversial.

TR in Conversation with Haben: 21:37
Losing the keys, what does that look like in the real world? What does someone actually put at risk by having these conversations?

Haben: 21:47
So vice president Harris said…

— Audio from the now infamous meeting:

I’m Kamala Harris, my pronouns are she and her, I’m a woman sitting at the table wearing a blue suit.

Haben: 21:53
And a lot of people had so many ridiculous responses to that, because it felt like, it’s so obvious, don’t talk about it. But they weren’t thinking about an accessibility perspective. It was sighted people with a lot of privilege, and blind people with a lot of privilege, trying to brush that off, then we get to a situation where, let’s say, a white person says that they’re white. A lot of people who carry privilege will feel uncomfortable with that. And a blind person who is white, and at a conference, does an image description and says they’re white, they might feel like they’re putting themselves at risk of being ridiculed, and no longer being cool, or risk of losing respect. If they say something that a lot of people carrying privilege feel like, it’s so obvious, it should not be discussed, it’s not relevant.

TR in Conversation with Haben: 23:11
Okay, I get that. It’s hard for me to grasp it from the perspective of that individual who feels that way. Because all of these things are visual, right?

Haben: 23:23
They’re visual. But when you voice them, you call attention to them. So when you voice, that you’re white, you’re calling attention to whiteness, which also calls attention to white privilege. And there are still so many people who do not like talking about white privilege, or feel like it doesn’t exist, it’s not a thing. So when you bring up concepts that are adjacent to white privilege, like describing that someone is white, that makes a lot of people uncomfortable.

TR in Conversation with Haben: 24:03
Okay, that makes sense. We’re making people uncomfortable. And the people with the privilege are those who are uncomfortable.
TR: 24:06
Go ahead and add that to the list of Why I think self description is a good thing. And please don’t make the mistake of thinking that someone who was white and blind doesn’t have access to that privilege, and therefore may even be in fear of losing that access, or more.

Haben: 24:24
And there are blind people who are concerned that if you ask for one more accessibility feature, you’re going to lose all of the other accessibility features as if there’s a limit to how much accessibility can be called for. But I feel like we should approach it from a place of abundance and assume and desire that everything be accessible.

TR in Conversation with Haben: 24:49
Yes. I don’t understand why folks would think that you have to give up one to get the other.

Haben: 24:56
I think it’s from years and years of being excluded. It is frustrating to be excluded from so much information.

TR in Conversation with Haben: 25:05
This reminds me of some of those in the community who are so eager to accept poor quality audio description, such as that which uses synthesized speech instead of human narration. For example, I’ve read things online like…

(Thomas mimicking a very nerdy voice, says):
“These companies have bent over backwards for us, if we aren’t grateful, they’ll stop describing altogether.”

Well, that’s what they sound like in my head, when I read these types of things.

Voice of Marlett, with an audio effect that simulates being heard in one’s head:
“Maybe find a gentler way of saying that!”

TR:
You know, I should be more compassionate. It’s not really their fault. However, I would encourage these folks to just look at history. It’s not until the disenfranchised raise their collective voice and take a stand. At some point, you have to just realize, what are we really at risk of losing? Maybe that’s just bad audio description? Personally, I’m good with that.

Now, back to the guidelines.

Haben: 25:59
I don’t know of any guidelines right now for self descriptions. And I’m hopeful that you will be part of the process of creating these guidelines, and that there will be conversations with blind people from underrepresented communities to create these guidelines.

TR in Conversation with Haben: 26:21
Yeah. So how can we do that? (A knowing giggle.)

Haben: 26:24
Giggles!

Conversation. Plans.

In this podcast, we’ve been talking about what should be in those guidelines.

TR in Conversation with Haben: 26:35
Yeah, I guess I’m thinking, if it’s not one of the two large consumer organizations who get behind it. And we want it to be led by marginalized groups of blind people and others, who’s the organizing body,

Haben: 26:55
we can change the structure, we don’t necessarily need an organizing body to lead the way.
We can have individuals leading the way.

Music begins.
A bouncy bass drum drops into a driving rhythm that hints at an Afro beat style.

TR: 27:06
You know I’m in there.
But if I weren’t, she would have had me at, we can change the structure.
I believe both consumer organizations are extremely useful and important to the community. They serve a variety of purposes. However, I’m not a member of either right now.

TR in Conversation with Haben: 27:14

I’m a row cowboy. Lol.

Haben: 27:25
It’s not something a rogue cowboy can do on its own. But then a cowboy can collaborate with other cowboys and cowgirls.

TR in Conversation with Haben: 27:36
(Laughing )Let’s change it because I don’t even like the cowboy reference anymore.

Haben: 27:42
(Laughing )
Let’s try it again. What reference would you prefer?

TR in Conversation with Haben: 27:46
Yeah, just people. I like the fact that you’re saying that it should be done within community. And I guess I want to find more people who are like minded, such as yourself and others, to form that community to really feel like there are a lot of other people who are speaking about it. And I think what happens in social media, sometimes it feels like, yeah, people are “liking”, therefore trying to amplify the conversation. But those who are actually in conversation seems to be far and few. And I just want to find more.

Haben: 28:19
Perfect. So let’s build up a coalition of people who believe in self descriptions value. And then once we have that collective, we can start brainstorming what should be in the guidelines.

TR: 28:35
So we started with some of the possible guidelines we identified here today.

The act of self describing should be quick, about a minute at most. This means folks unfamiliar should be given some advance notice that they’ll be asked to provide this access.
Including the notice and guidelines along with the meeting agenda, for example.
Consider what’s visible to those in attendance. Are we talking about a Zoom meeting?
Keep it to your waist up and start from the head down.
Skin Tone eye color, if that’s something you’d like to highlight, hair color, facial hair, glasses, a brief description of your shirt or blouse, you get it? What’s your background? If you’re seated by a window overlooking the city skyline, that may be a nice touch.
Plain white wall? Meh!
But remember, it’s zoom, there’s probably no need to describe those things off screen.

— Music ends: The bouncy bass drop that opened the track echoes and fades out… emphasizing the statement that follows.

Haben: 29:24
And then there’s an asterisk, however, share and describe those things that are not visible on camera, if they are highly relevant to the things that are visible on camera. Sometimes people might appear a certain way, like someone might look white, but identifies with other racial and ethnic identities, and they want to share that even if it might not be visibly obvious.

TR in Conversation with Haben: 29:57
Yes, good example.

TR: 29:50
It’s okay to be creative. Put some of your personality into the description. I mean, let the words the tone, also speak to who you are as an individual. And as we mentioned earlier, for some identity can be triggering. So safety first. It’s always optional. Although I read some posts where some opt out of the practice of self describing or providing their pronouns just to be provocative. Allow me to suggest an appropriate self description for such an individual…

Eminem Sample: 30:28
“May I have your attention please!”
“My name is…”

TR: 30:31
Asshole!

Concise, right?

Voice of Marlett, with an audio effect that simulates being heard in one’s head:
“Maybe…

TR:
(Interrupting) No!

this is a good time to remind us all that while we’re talking about access, we’re not necessarily including everyone.
There’s a difference between purposefully excluding people and unknowingly doing so. The difference is awareness. As with audio description, for example,

Haben: 30:52
I can’t access audio descriptions, because I’m deaf. I don’t hear them. So to access films, I need a descriptive transcript. And that would have the audio descriptions. And they would also have the dialogue. And because there isn’t a time constraint, that descriptions can be much longer and more detailed compared to audio descriptions.

TR in Conversation with Haben: 31:20
And I know those are far and few.

Haben: 31:23
Yes, yes, they’re still quite rare. It

TR in Conversation with Haben: 31:26
feels as though it shouldn’t be that hard, because what you need exists is just not together.

Most films that come out have captions, and those that are coming out now with audio description, that text is alive somewhere. So it’s just the combining of the two, what kind of conversations are being had now to make that available?

Haben: 31:50
Not many conversations, I reached out to Netflix asking for descriptive transcripts. And they created what the first one from Netflix that I remember, is crip camp.
That came with an amazing descriptive transcript. And I read through it, it was almost like a novel so many descriptions, and all the conversations. And since then there have been more descriptive transcripts from Netflix.
TR in Conversation with Haben: 32:14
where do you get them?

Haben: 32:15
On the page for the show or film? I believe there is a more or notes section on that webpage? Under that would be a link to the transcript.

TR in Conversation with Haben: 32:37
So does one need to subscribe to Netflix in order to gain access to that?

Haben:
Yes.

TR in Conversation with Haben:
So it’s not a lot of content. So you’re paying the same price, but have access to way less content.

Haben: 32:50
That is the frustration of not having enough descriptive transcripts. And I’m hopeful there’ll be more than that other media companies will also create more.

TR in Conversation with Haben: 33:02
Wow. So right now it’s only Netflix who gives you access to that.

Haben: 33:06
I think Netflix is the only one out that I can think of that does it formally. There are other descriptive transcripts for other films out there. But it’s not a consistent thing.

TR in Conversation with Haben: 33:21
How can this podcast help to promote more access for folks who are deaf blind?

Haben: 33:29
When you talk to people who are working in media, encourage them to include descriptive transcripts.

TR in Conversation with Haben: 33:36
And a sample from crip camp would be a great place to point them in order for them to kind of take a look and see what that looks like? Correct?

Haben: 33:44
crip camp is great. And if they don’t have a Netflix subscription, they can look at some of my videos. I include descriptive transcripts in my videos, that’s

TR: 33:55
via her YouTube channel, Haben Girma on YouTube,

Haben: 33:59
Instagram, and to some extent on Facebook and Twitter as well. And my videos tend to be about deaf blindness, accessibility, human rights…
A sample from Haben’s YouTube channel:
Haben speaking. Hello. I need to tell you about CRM alee, an American child was forcibly disappeared by the Eritrean government. We are calling on US Secretary of State Antony Blinken to help her…

Haben:
and the last video was about chocolate.

TR in Conversation with Haben: 34:33
What kind of chocolate do you like?

— Sound of Haben opening a package of chocolate on her YouTube video…

Haben: 34:36
I love experiencing new flavors and trying new combinations of chocolate.

— From the video, Haben announces after trying a new chocolate:
“Thumbs up.”

Haben: 34:35

I’m deeply curious and love culinary adventures.
So something will be my favorite temporarily. And then I continue exploring and trying new things and then I discover a new favorite.
My favorite thing is adventure!
TR in Conversation with Haben: 35:02
I like that!

What else do you like to do when you’re not working in writing your books? You’re not talking to people about self description. What does Haben Girma like to do?

Haben: 35:13
I am a dancer and I love dancing.

Swing, Salsa, Merengue, I feel like it’s a beautiful way to create community, meet new people and get exercise.

TR in Conversation with Haben: 35:27
Do you dance competitively?

Haben: 35:28
I did briefly when I was in school. And I realized competitions kind of take the fun out of it. I don’t want to be in a zone where I’m judging people, or I feel like people are judging me. I’d rather be in an environment where people are expressing Joy building community. So I’ve long since moved away from dance competitions.

TR in Conversation with Haben: 35:55
You know what you want! Excellent.

— Music begins: A quick snare drum as if confirming what was said along with a voice that says, “Yeah”. This opens a smooth joyful but funky bass line over a melodic groove.

TR:
Well Haben, I truly appreciate you taking some time. I want to let you know that when folks come on the podcast and speak to me and share some of their story or share some information. I like to make sure that you all know that you are an official member of the Reid My Mind Radio Family!
I hope this is just a first conversation of many more to come, especially around this topic of self description. I hope we can work together. So thank you.

Haben: 36:27
You’re welcome. And thank you for having me on the podcast.

TR: 36:31
If you want to contribute some thoughts to this effort of creating self description guidelines, hit me up at ReidMyMindRadio@gmail.com.
Specifically, we’re seeking input from people of color who are blind or have low vision and from other marginalized communities.

If you want to share any opinion on this topic whatsoever, you can feel free to send me an email as well. If you send nonsense, well…, I’ll say less.

Big shout out to Haben Girma.

Over the years, many of y’all reached out and suggested that I get Haben on the podcast, I wasn’t at all against it. I just really like to make sure that the content coming out of this podcast is different from others. Reid My Mind Radio isn’t really about telling you all about the newest gadget book or whatever. There’s plenty of podcasts that do that and do it well. I want this podcast to add value to whatever conversation we’re in. So if we’re discussing anything description related, anything about representation, technology, or whatever, I hope we can bring a valuable voice to the discussion. And of course, make it funky!

Haben brought that. And this was the right place and time for that conversation.

On that note, let me tell you it’s always the right time for Reid My Mind Radio!

The majority of our episodes are “evergreen.” So if you know someone who hasn’t given this podcast and listen or read of the transcript, let them know they’re missing something in their life. They can easily find Reid My Mind Radio wherever they get podcast.

We have transcripts and more at ReidMyMind.com.

Now come on fam, say it with me…

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!

Hide the transcript

Music begins – A bouncy synth opens a driving Hip Hop beat.

TR:

[megaphone sound effect]

Greetings Reid My Mind Radio family. Welcome back! to the first episode in this final season of 2022. I’m talking about Young, Gifted, Black…

[in the background]

say the word

[yells]

And disabled!

If you don’t know it all began with an episode I produced in 2020 with my man, brother, Ajani AJ Murray. If you haven’t listened to that original episode, I strongly suggest that you do.

I like to begin the episode with some sort of an intro, you know, an update, a skit, a few words loosely tied to the episode or its theme. Well, today’s guest has so much greatness to share that I want to honor that and leave most of this episode to her and the topic at hand. But here, we always kick things off with the drum.

Reid My Mind Radio Intro Music

A collage of different crisis from news reports: 01:07
“We have stormed the Capitol!” A rioter yells!

“To Washington and the high stakes hearings on the January 6 attack on the Capitol.” – News anchor.

“A rally organized to protest COVID restrictions, with members of the state’s militia groups openly taking part” – News Reporter.

“Longer fire seasons, stronger hurricanes, more intense heat waves and floods. Across the world climate events are getting more extreme” – News anchor

“If it feels to you like there are more weather related natural disasters. That’s not just a feeling.” – News reporter

TR:
All of these things are taking place around us today and are increasing in occurrence. And my recent dive into the speculative fiction of Octavia Butler, and it really got me thinking how prepared are we people with disabilities for major disaster? Then I recall meeting someone on Clubhouse who can really speak to this in a way that truly takes this all into account.

— Music begins, Triumphant horns blow as a symbol crescendos into a mid tempo Hip Hop beat lead by a driving kick drum.

Justice Shorter

Justice:

I am a black blind lesbian woman. I hail from the Midwest Region born and raised in Milwaukee, Wisconsin, but I currently reside in Washington DC.

I am the granddaughter of Leola Daniels Carter and Fanny Jahari. I’m the daughter of Lily Mae Carter and Michael Demetrius Shorter. It’s always top of mind for me to link and give honor to the lineages in terms of the work that I do, the spaces that we occupy.

I describe myself as a curator, as a creative, a coordinator of sorts. I am a disability justice advocate a Black Disabled Lives matter amplifier, a international trainer and speaker.

I do a lot of work that heavily focuses on disaster, justice, disability justice, racial justice, gender justice work, because they are inextricably linked, you cannot have one without having the other.

A lot of my work kind of centers around those primary issues. Iadjusted and adapted as I continue learning and growing and evolving because quite frankly, there is no other way for me to move and maneuver in this world.

TR:
A part of that learning, growing, evolving is in regards to her blindness. This began with glaucoma around the age of five or six.

Justice:

That actually first started out with a retinal detachment which took all of the vision in my right eye. Then glaucoma slowly started to take the vision and my left eye. From very early ages, it has informed my life. So it would be categorized as a developmental disability for sure. Given how it has informed my developmental years, my early developing years.

My relationship to disability, though, is one that has come with the progression of time as well. I have always been deeply steeped in my blackness. But coming into a closeness and intimacy with disability has been something that has happened over time.

TR:
I’m sure there are a lot of people with intersecting identities who are adjusting to disability that can relate.

BIPOC, or a ter that better encapsulates this group, people of the global majority, who may have spent years learning how to deal with overt racism, microaggressions and all sorts of injustice, while trying to develop a strong and positive self identity. Only to have to now be faced with internal and external ableism.

Justice:
It wasn’t until I started to delve more deeply into the work of quite frankly, people of color with disabilities, that I started to see myself more clearly and I started to smile and rejoice of what that was reflected back to me.

To see yourself mirrored and the experiences of other people who have similar journeys as you do, really helps you to getting a better understanding of how you can position yourself in this community and in this space.

So it wasn’t until I started reading folks like Mia Mingus, Leah Lakshmi Piepzna-Samarasinha, Patty Burns, Stacy Park Milburn folks who, again, are luminaries in the space of Disability Justice articulators and architects of what we now know as disability justice. That I was really able to grab hold to it in a way that was so deeply personal, and that encompassed such a profound sense of pride.

TR:
We’re talking about the power of people and our stories, enabling us to fully see ourselves and explore all of those things that make up who we are.

Justice:
I had already realized quite early on that standing in my truth was a means of survival. It was a means of me utilizing my own story, as opposed to having others use it for themselves. What does my story mean, not only to myself, but other young women like me, other Black lives, LGBTQIA, folks just like myself, other people of color, like myself with disabilities, it wasn’t until I started to think about that a bit more that I was far more inclined to start working on disability as an area of practice.

TR:
Part of that process can literally require finding the right location, a place that presents opportunities for justice, and then moving to Washington, DC.

Justice
I came out to DC, the doors kept opening and they were all related to disability. There were a lot of internships and practicum opportunities and all of that stuff. And all of them were like disability oriented opportunities. And I’m like, well, here we go, I’m not gonna turn down this internship I’ve been dreaming up or this post grad school job that I’ve been dreaming of, because it’s in the disability space, and I didn’t want to be held in a box. I was very scared for quite some time that disability would cage me. I say that with purpose. I say that with intention. So many of us are caged because of our disability.

TR:
Cages are more than physical, a boundary that limits our movement. Well, that can be in our thinking about our lives and possibility.

Justice:

Considering how many people of color, how many black people are imprisoned in this country, and how many of them have some sort of disability, mental health consideration, or access or functional issues.

I think about trying to do this work in the different layers of discrimination that happens when you say that you have a disability and you’re trying to find a job, I did not want to be pushed aside, I did not want to be pushed out of the different sectors that I wanted to pursue professionally. The opposite happened. The very thing that you think will cage you can sometimes be the thing that frees you. It became the thing that allowed me to see myself more clearly, allowed me to grow wings, in a sense of flying in all of these different directions and with all of these other phenomenal people who are also doing dope stuff being completely embodied in their truth, and that should just excited me to know him.

TR:
When I first began making audio even before this podcast, I thought about working in radio and reading mainstream stories. I recall thinking,

[faintly]

I’m more than just disability.

[back to normal speech]

When I hear Justice say…

Justice
The very thing that you think will cage you can sometimes be the thing that frees you.

TR:
… Learning more about disability culture and challenging my own ableism has brought me to a place where I realized the opportunity and value in telling stories from a disability lens. In no way am I settling for something less rather, I’m fully aware of his greatness and possibility.

Justice:

A lot of folks have distanced themselves from the word disability as a means of survival. That history is the interlocking ways that people have been discriminated against all of those forms of compounded discrimination has caused many folks to distance themselves, whether it be locking you out of the school systems, locking you out of the employment system, locking you out of the type of medical care that you need, locking you out of the type of housing that you need, actually locking you into nursing homes, psychiatric facilities, group homes, settings that you don’t wish to be in. People with disabilities have an acute awareness of these things. It has caused folks to quite honestly try to be very fearful about the proximity of disability, kind of getting too close to that word, or getting too close to those issues. That should not be the reality that we all live in.

TR:
You know this isn’t about the word disabled, right? Many prefer to use terms like “special needs” or “differently abled,” but that doesn’t change the impact of systemic ableism.

Justice:
And that is why it’s so deeply important that we change those structural inequities that people have to deal with on a day to day basis, so that people can, people of color with disabilities, young and old, of any age range, any type of disability can hear that word and understand that it is inseparable with freedom. It is inseparable from joy. It is inseparable from laughter, and levity and friendship and fellowship, all of the things that allows your soul to breathe. That’s kind of what I try to center my work on as much as I can.

TR:
Building bridges for us. Our wellbeing physical, emotional, spiritual. We’re talking about our safety and you know, that goes beyond natural threats.

Justice10:00
There’s also human-caused crises that we have to contend with: the Flint water crisis, things that are happening with the nuclear power plants, factories that pollute water, you think about environmental injustice, which also, of course leads you to the Environmental Justice Movement, which was founded by people of color. A lot of times that history gets pushed aside or buried, when we talk about environmental justice.

TR: 10:24
Whether man made or natural, these threats to our safety don’t always just spring up on us.

Justice10:30
Dealing with structural violence on a day to day basis. Also, it creates what people in the social work and psychology world call the sandpaper versus baseball effects. The baseball effect is when something hits you over the head, it’s kind of very hard. It’s a hard hitting issue that evokes this trauma. But then there’s also the sandpaper effect, which is trauma that things that grate on you over time, it kind of wears you down wears on you over time, things like poverty, not being fully represented, not only in terms of your politics, but also in terms of these social environments that you navigate within things like medicalized ableism. And discrimination, all of these things wear on you, over time, all of these things are structurally violent, it is the difference between your potential reality and your actual conditions.

TR:
Too often individuals are held up as an example to model “he overcame the poverty,” “she broke through the glass ceiling.” Whether we’re talking about racism, sexism, ableism, we hear it all the time, “she was able to do it, why can’t the rest of you?” But focusing on individuals does nothing to address the systemic problem.

Justice:

We as people of color with disabilities, we have the potential certainly to pursue whatever aspirations that we want to pursue in terms of professional or academic or spiritual. And yet, so many of us are kept out of those areas of those sectors for all sorts of reasons, but many of them tie back to racism, ableism, sexism, ageism, so on and so forth. All of those things are structurally violent, because it keeps you from living the life that you could live.

Toni Morrison tells us that racism itself is just a distraction. It keeps you from living the life that you truly wish to live. It keeps you from doing the things that you truly wish to do, because you are in a perpetual space of having to explain your very existence to people who quite frankly, may or may not even give a damn at the end of the day.

TR: 12:31
That’s fighting for employment that enables you to earn a living wage in order to afford housing where you don’t have to worry about your children getting lead poisoning, or access to good schools or even clean drinking water. And then there’s something we really need to consider in regards to the often suggested advice around disaster preparedness.

Justice 12:50
So many individuals who are impacted by disaster or who live in disaster prone areas are told to simply prepare, to pack up as much stuff as you can pack up, hoard as much stuff as you can hoard. Have you a to-go bag that’s filled with all of these things that you can afford to put in it. But if you cannot afford these things during times that are not embodied by crisis, then you certainly can’t afford them enough to stock up on them prior to a crisis. Are we sculpting solutions and recommendations based on the conditions that only a select few can meet? Or are we creating solutions and ideologies, remedies and practices that are going to be applicable for the people who need them the most.

TR: 13:36
As Justice simply put it, preparation comes with privilege. If you do have that privilege, by all means, consider checking out various suggestions on what to include in an emergency to go kit. Ready.gov has a number of suggestions. As people with disabilities you also want to consider your access needs like white or mobility canes, assistive technology, and other technology that may be required for you to gather information or communicate with others. However, it’s important to note that the onus shouldn’t always be placed on the individual.

Justice:
It’s kind of the wave in the finger in the face response.” Why didn’t you prepare better, we can’t always save everybody!”
People deserve to survive irrespective of what their class status is. My thinking around this has shifted. I go more towards how are we building community and connection. Whereas I may only be able to buy a flashlight, my neighbor up the street may be able to buy a couple of extra cases of water. My other neighbor down the road may have a generator. My other neighbor down the street may have a couple of more cans of food. Can we create community in this way? Disability Justice teaches us that we are each other’s survival strategy.

Music begins – a smooth slow jazzy Hip Hop groove.

TR: 14:46
This feels like the antithesis of our society’s norm contrary to the idea of independent making sure you have your own solely relying on yourself. This is interdependence. We spoken about this here before and up approach that encourages collaborative work.

Justice 15:02
coming back to center around community, how can we help each other survive? What I can’t carry, maybe you can. What you can’t do, maybe I can? How can we support each other?

TR: 15:14
Another term for this way of acting and thinking is mutual aid.

Justice 15:18
It’s looking at this in a way that says, even if you cannot contribute in these ways that kind of meet other material needs, your life is still worth saving.

How can we support in that way? That could be any of us at any time, that is also a means of planning for the future. I don’t have this disability today, I may have it in two months, or if something hits me in a certain way, I could have that mobility disability.

So us planning around how we’re going to support these folks in our community, now, it’s important for all of our collective survival.

TR:
Perhaps this goes beyond the physical.

Justice:
Cole Arthur Reilly, who has this wonderful book called This Year Flesh. In that book, Cole says, What if God did not just want to use you? What if he also wanted to be with you? I think about that, in terms of people having inherent worth and recognizing wholeness, which is one of those disability justice principles. We recognize the wholeness of people, we understand that there doesn’t have to be a utility. In order for people to survive catastrophe. We could just inherently care about the presence and the value of each other as people. And that could be enough to make us think about preparedness in a more expansive way. That recognizes that all of us deserve the opportunity to survive.

TR: 16:31
With that said, what exactly are some examples of mutual aid that exists today?

Justice 16:36
Mask Oakland, because they have done extraordinary work to help protect people with disabilities during wildfire seasons by making sure that people had masks to help themselves to breathe during the wildfires of California. These are people with disabilities helping other people with disabilities by supplying them with masks.

They also had a very targeted approach in terms of helping people who were houseless because they were the folks who were the most exposed. People who can go indoors and shut the windows and use central air units to stay cool and protect themselves from the air.

TR: 17:06
How often do we hear the narrative of people with disabilities as recipients of aid? Rarely do we hear of us as providers, especially when it goes beyond the disability community. But check out who stepped up when the pandemic hit and the rush on masks resulted in a shortage.

Justice 17:23
Oakland had masks that they were trying to distribute at the very least when supplies were running low.

Providing people with information on what types of masks to get and what type of masks did what, and making sure that people were willing to know. So that informational awareness was key.

This is also something that a lot of folks are doing online, in terms of telling people different ways to stay safe. And all of these different COVID protocols, people sharing knowledge on how to save themselves.

This is also happening in kind of non-crisis wave people with disabilities creating hashtags and creating websites around disability at home. What are some of the hacks that people are making? I think that’s actually the site’s name, “disability at home.”

TR: 18:00
Disabilityathome dot ORG, a catalog, if you will, of ideas and inexpensive hacks that enable people to create low cost solutions for mobility aids In Home Solutions for creating safe, accessible spaces in bathrooms, and for completing daily chores at home. As Justice noted, the same things that keep you safe on a daily basis are needed during disasters. So providing information is a component of disaster justice, to activism and advocacy, a real and important function that just so happens to be accessible for those with disabilities.

Justice 18:36
Sometimes when we talk about activism, we try to only act as if that can happen in ways that are very physical, being in the street, going up against police officers going out there and directly helping someone evacuate carrying them on your back out of the flaming building, right?

When we think about that, as forms of support, or activism, or things that would kind of constitute this framing around who is a responder or who is someone we can call in a crisis related event. But there is also a ton of work that’s happening in virtual spaces and online. And that’s really key, especially for many of us who can’t physically go out and beat the streets by way of protesting or going door to door to advocate for the things that people need.

TR: 19:24
We’re talking about all sorts of things here from crises like that in Flint, Michigan, or Jackson, Mississippi, that deprive people of clean drinking water, health care, access to physical and online spaces. A lot of that’s happening through hashtags, some of these online Twitter spaces and Facebook groups.

Justice 19:43
This is important because that’s how knowledge is passed. So many of us are learning through the lessons of others and through the lives of others. And when you share that information, it positions people with disabilities as experts of their own narratives, but also of their own survival. And I think that’s really important.

TR: 20:01
When talking about survival, Justice stresses that it goes beyond the high profile weather events.

Justice 20:07
What you might not consider to be a crisis, I would! The fact that there are people who might be doing construction in your building, and they don’t tell the blind folks what’s happening, it’s not a crisis for anybody else moving around that building, except if I hit that ladder.

People with disabilities have additional considerations that we’re thinking about on a day to day basis, it may not be a crisis as someone else, oh, I just have a scratch. But for me, it could take me out for days, or it could take me out for much longer than that. I think about that and I affirm those experiences for people.

TR: 20:37
Okay, now check out this example of mutual aid, Justice knows neighbors, and they know her. Even more than that, they look out for one another. So when Justice isn’t around, a neighbor will say something to a construction worker, like…

Justice 20:50

“You cannot leave that ladder here, you can, you cannot leave all of these tools in the middle of the floor because the cane may not catch it.”

TR: 20:58
Then I think it’s solely about themselves, but rather, each other, community, like a time a man with a knife tried to enter the building.

Justice21:06
The neighbors came together and supported one another and they made sure he did not get in here.

I had another neighbor who was locked outside of our building, the door knob literally came off, so we couldn’t get out. And he could not get in. What was my solution? My first solution was not to call the police because all of us were black. Two of them were black men. And there’s some additional considerations that you have to take into account in that way. The first thing that I thought of though was to go grab this neighbor of the black men, he came down, he literally undid all of the joints to get that thing undone so that we could all get out of the building. And so this guy could get in.

TR: 21:39
Together, they took action that would prevent such a crisis in the future.

Justice 21:43
We advocated that a new door be put on to the building, we advocated that the construction crew close the windows at night, so that different people didn’t have access into the building, which created another safety concern.

TR: 21:54
The lesson here, any conversation about disaster preparedness must be about advocacy.

Justice 21:59
I encourage you to start talking to the people around you making community with the people around you. I encourage you to start looking around you and assessing kind of what are the things that you can do if you are spending your time at a workplace and eight hours out of your life, every single day, Monday through Friday. And then okay, I think we need an evacuation chair, where is it because how am I going to get out and it’s not just acceptable that everybody else can leave except me. That’s not cool. I’m not okay that that is our plan, or that our plan is this only one person knows how to use the evacuation chair, and nobody else knows how to use it. So if Rob is not at work today, then it’s just too bad for me if a crisis happens on that day,

TR: 22:36
Justice recommends thinking about all of the places you spend time, community centers, public parks and malls for all sorts of crises. In 2022, the reality includes acts of insurrection homegrown terrorism, thinking about mass shootings, do you have an escape route, or no have a way to shelter in place? These are just some of the questions we should be asking ourselves.

Justice 22:58
How can we use things like vocational rehabilitation services, assistive technology organizations that say, Hey, I think I need this piece of assistive tech because it’s going to help me in a crisis. I’m going to use it for dual purposes. I’m going to use it on my day to day but it’s certainly going to be useful as something to support me during a crisis as well.

TR: 23:14
How does geography play into preparation? Specifically, I’m thinking about those living in rural environments far from their nearest neighbor.

Justice 23:22

I think sometimes that gives you the illusion that there’s no community because people aren’t close. And that’s an untruth. Many of them have way more survival techniques that any of us would even understand because they have had to live on their own. And because they haven’t had easy access to just go down the street and get to someone.

Listen, when the cold snap happened down in Mississippi, it was 2020 or 2021. All the years are running together. When the cold snap came into those areas. A lot of black folks who lived in very rural areas mentioned how “Listen, we didn’t have any running water,” “our generator started to go out,” “there was no one around us for miles, we had to figure out how we were going to get from point A to point B.”

What ended up happening, you still have people who ended up driving in, you still had people who ended up starting to bring people over to their homes so that they can have baths. You had people who were doing carpools that make sure that people had access to food and water. People showed up for one another.

TR: 24:19
Of course, this doesn’t apply to everyone. Justice encourages organizations to really think about this, especially when making new purchases.

Justice 24:27
If we’re getting new vans, if we’re getting new buses, are they wheelchair accessible? Those very same church buses, vans, these things are also becoming evacuation vehicles in a crisis. Are they equipped with a wheelchair lift? If they not, we have a problem. We’re not planning for everybody. You’re saying that everybody else can get on this bus that we have repurposed to be you know, an evacuation, but we’re gonna go up this road and we’re gonna get everybody who want to come. Wonderful. What if I want to come and I can’t because there’s no way for me to get on this bus with my power chair. You can’t just put me on there and then I have no means of moving around once I get to my location.

TR in Conversation with Justice: 25:03

Yeah, absolutely.

Justice 25:05

When I first started to lose my sight, and I started taking courses that were related to activities of daily living, my instructor was also a blind woman. And she said that the difference between a problem and a crisis is time.

TR: 25:14
Remember that situation where the door to Justice’s building couldn’t open. That was a problem. But when you add fire and smoke, it becomes a crisis, the tenants working together that makes that building a community. Churches, social organizations, and even chapters of consumer organizations are all opportunities for mutual aid organizing.

Justice 25:35
I would also beg the leadership of those entities to consider how they are thinking of their whole community, how they’re thinking of people with disabilities, because like I said, we will make investments in certain things. But are those things accessible from the onset? Is it something that we have to complain about or somebody gets hurt or somebody gets left out, then we start to consider it. “Oh, wow, we had to leave Miss Jenkins at home, hope she’s okay when the waters was rising, because nobody had a vehicle that could get her out.” But this is our community, we love it. But yet we didn’t plan for Miss Jenkins.

TR: 26:06
For those who may think they don’t have any access to community, that online access can prove to be helpful in various ways.

Justice 26:13
Even by listening to a podcast like this is cultivating a connection with different streams of thought from other people. That also helps to decrease isolation, and also helps you kind of just learn different patterns and different practices that might be helpful for you.

I could get on these types of platforms and talk from sunup to sundown, and I still wouldn’t be able to give you a fraction of all that goes into doing disaster justice and Disability Justice work.

What we could do is build together and create a relationship so that we can stretch out as much as we can in terms of helping people to understand what will be the most useful for them. What is necessary for me as a blind woman is not going to be the same for somebody with a different type of mobility disability, we have to individualize our responses a bit more, as opposed to just saying people with disabilities need to do a better job of packing a bag and going.

TR: 27:08
This episode began with the idea of becoming more prepared in the event of an emergency, it evolved into a broader understanding of a more holistic approach to mitigating disasters. That is disaster justice.

Justice 27:21
Thinking about all of the different ways that people are impacted by disasters across a disaster cycle. So it’s not just during response, but it’s also during the preparedness stage. It is during the mitigation phase, it is during response, during recovery. It’s long term recovery. Recovery does not end when the cameras school, when

Are we thinking about this in terms of people who are the most directly impacted, also having lines of impact in terms of decision making authorities? Or do we only ask the people who are the most impacted? What are their thoughts in kind of a town hall setting and then we go back into our private conference rooms and people who don’t live in these areas make all the decisions, or people who live in these areas, but don’t necessarily represent the priorities that the people have go forth and make those decisions. Are people of color with disabilities being disproportionately impacted by such decisions?

I encourage folks to read the work of Alessandra Jerolleman who has a wonderful text out there about disasters through the lens of justice. She has kind of these four principles around what constitutes a just recovery. But you can apply that to nearly every phase of a disaster cycle, and really gain some in depth understanding. So what it means to do this work in a way that is far more equitable, but also far more effective in terms of centering the groups on the ground, who are directly impacted by these crises on a day to day.

Music begins – a synth and sounds of nature that opens into an uplifting Hip Hop groove.

TR: 28:48
Examining disaster through a justice centered lens requires an understanding of disability justice. Unfortunately, I see it used as a broad term that disregards his origin. Disability Justice is specific to the 10 principles articulated by Patty Burns and Sins Invalid. I’ll link to these principles on this episode’s blog post at ReidMyMind.com and encourage you all to read further.

Among the various resources Justice shared with us today, I’d like to make sure you point your browser to JusticeShorter.com. Here you can access some of her past speeches, as well as getting in contact with her. These conversations about disaster preparation can be heavy. So I had to find out how justice unwinds and takes care of herself.

Justice 29:29
I’m happy that you brought up this question because I think people need to have their own resilience rituals. And listen, that word resilience has really thrown a lot of people off because people in power tend to use that as a way of not giving people the type of support and material things that they need to meet their critical needs.

Oh, you’re just so resilient. We’re resilient because we have to be it’s out of necessity. It’s because you have refused to direct funding towards this neighborhood. When I talk about resilience rituals, I mean, the things that keep me getting up and going, and don’t get me wrong, there’s some times that you need to stay down, because rest is essential.

I have learned over the years what I need to pour into me in order to get greatness out of me, and that is not something that can be predefined by anybody else except me. I had to learn that because sometimes people will look to their supervisors or look to mentors, what do I need to do? What do I need to do?

TR: 30:25
Sounds like what we’ve been talking about, an extension of the conversation around safety, who really knows more about what’s best for you than you. For Justice it’s about gospel music, walks on her treadmill, family and

Justice30:39
Just hang out with my girlfriend and have a good dinner. We travel, we do all types of dates that are fun and spunky. And you already know, I love reading, there’s always a book that’s queued up for me that I’m excited to get into. Every time I travel to do a speech or to do things that are related to my job, I try to bake in some time for living life and going and exploring that city and seeing what communities of color are doing there. What are they eating? What are they listening to? How are they having a good time? I try to at least embed myself in the city or in the culture just a little bit while I’m gone.

TR: 31:13
This was a true honor to have justice on the podcast. And you all should know there’s only one way to make that clear.

TR in Conversation with Justice:

It’s a very simple way and it’s by letting you know that you, Justice Shorter are an official member of the Reid My Mind Radio family. So I appreciate you.

Justice 31:27
I appreciate you. Thank you so much. It was a joy.

TR: 31:30
There’s so much in this episode. I honestly think this is one to hold on to, refer back to. It’s a resource for real. A resource that will be right here for you. Wherever you get your podcasts.
Remember transcripts and more are at ReidMyMind.com.

And now, in case of an emergency, I need to make sure you know that’s R to the E, I, D!
— Sample: “D! And that’s me in the place to be!” Slick Rick

TR:
Like my last name.
— Reid My Mind Radio Outro

TR:

Peace

Hide the transcript

TR:

— Theme from Welcome back Kotter
— A hip hop drum loop…

Greetings, Reid My Mind Radio Family.

— from song, “Welcome Back!”

I feel like I’m home. Well, I am.

You know what I mean right?

That familiar place where you’re comfortable, your needs are being met and you feel loved and appreciated. That’s what I want you to feel when you rock with Reid My Mind Radio!

Let’s start this off right!
Can I kick it?

— “Yes you can”

Can I kick it?

— “Yes you can”

I’m excited to kick off this first season. If you caught the Black History Month bonus episode, you already know, this season is called Doing Your Thing with Disability. Now I know some of y’all may say that a bit differently as in Doing’ Your Thang with Disability! You should know, that indeed is the feeling behind the season. I chose not to formally name it that way because not everyone gets that energy right when saying it. If you do appreciate and respect that vibe, by all means feel free. If you do not or if you question whether you’re qualified to do so, well, don’t it’s cool, say it phonetically. Doing your thing with disability.

What I hope to deliver during this season are 4 episodes with varying examples of people pursuing different goals in their lives for a variety of reasons. We’re touching on Accessibility, entrepreneurship, music expression, self-discovery and more.

I encourage you to listen between the words.
(Filtered Voice:) Is that a thing?
Sort of like reading between the lines?

Throughout each episode, the energy is not about getting passed or overcoming, nah, that’s what they talk about over there…

The way we get down, right here, we’re doing it with disability – and to me that’s something to celebrate.

— Reid My Mind Theme Music

TR in Conversation with Marguerite:
This first season of Reid My Mind Radio in 2022 is all about doing your thing with disability. And I want to know, what does that mean to you?

Marguerite:
Wow. It to me, it means being my authentic self. And disability is just a part of my shell. And it’s a part of the filter that I’m experiencing this physical life through. And so I can’t escape that. So it’s a part of who I am. It’s just not all of who I am.

— Music begins, a mid tempo smooth jazzy Hip Hop beat.

TR:

Who she is? Well, this is Marguerite Woods.

Marguerite:

I am a woman, a black woman with many interests, and mainly, I am having an experience as a spiritual being in my humanity, and so the roles that come up for me are absolutely a mom, family member friend, a community person.

She, her are my pronouns. And I have on a suit jacket, I think it’s black and white, I have one little flower under it with little fringe around the top yoke.

I normally wear earrings, because I like them, I’m a little artsy, and they usually feel really creative to me. And I have on, dark shades.

I am black. I am bald. I am beautiful. And I am bold.

TR:

It’s been a while now that I’ve been incorporating image descriptions as part of the podcast.
I know there are some who may wonder why, it is a podcast after all.
A big part of that is identity for me. I want you to know as much about the people I’m presenting here on the podcast.
Truth is, sighted folks still get the opportunity to access this information via a nonvisual medium, because podcasts require an image to accompany the audio file.

But there’s more than identity in what we hear in an image description.

TR in Conversation with Marguerite:
Your outfit today, is there any particular reason that you wore what you wore?

Marguerite:
I decided deliberately to wear what I’m wearing. It feels comfortable. I think it looks good. And we talked about possibly video at the end. I wanted to project a certain image. I wanted to feel a certain way while doing the video. I feel very feminine. My outfit helps me to feel like that.

And the earrings are just an added touch that I really like, because I’m bald, I think that it highlights my frame.

TR:

Being intentional, goes beyond her wardrobe choices. Marguerite is thoughtful with her words. It’s one of the things that really stands out when first meeting her. It’s evident in the way she approaches each of the questions posed to her. Like…

TR in Conversation with Marguerite:

How do you identify with disability?

Marguerite 04:

Wow Thomas, that’s a loaded question, how do I identify with disabilities?
It’s been a progression of things and when where I am today is because of that progression.

So I don’t want this to sound flat or linear. I arrived here.
I’ve been toying with how do I talk about what we’ve been calling disabilities. And as I think about them my blindness and and others with a variety of different things. What I keep coming up with is this whole idea of diversity. We have diverse abilities.

my relationship is that whatever I’m dealing with, and in my case, it’s blindness, it’s given me an opportunity to explore the life that I’m living from a very different perspective, than I started out exploring life. living life, because I think of each of us as an explorer, or pioneer in our particular part of life.

TR:

That exploration can take her to foreign places, but much of it is within herself. In fact, she sees it as selfish.

Marguerite:

Everything that I experience, think about relate to is totally through my filters. And that in itself is selfish. But not in the way that I grew up thinking about the word selfish.

There’s no way to relate to life and be neutral, because I’m relating to it through my filters. And every other person is as well. And the best I can do with that is expand my filters, and expand the understanding, from having experiences with other folks.
TR:

If you prefer your ideas presented in a more concrete form, Marguerite offers a bit of a disability toolkit.

Marguerite:

in a practical way, the way I relate to disabilities is understanding that each one of us has to have an ideal of what we’d like to be able to do, where we find ourselves how we’d like to be able to manage whatever it is we’re trying to move through. And so, philosophy, some skills, some technology and some techniques, and absolutely some guidance in any way that you can find it to help you better do what it is you’re trying to do.

TR:

One of those skills that Marguerite has built over the years is advocacy. It goes back to her childhood growing up in Baltimore City, the area Marguerite describes as being designated for African Americans.

Marguerite:
There was a lot of feelings of just being done wrong, not being treated well. There was an energy of distrust, anger. But in the middle of all of that, I enjoyed the connection with family members and community members. And this sense of looking out for each other, a desire to move forward in a positive way, enjoying whatever life had to offer. And I felt that the elders in my community, were very interested in assuring that their children, and the younger people in the community were able to enjoy the things they felt they had not been able to.

— Music ends

And so the whole advocacy around that felt noble and it felt right to me.

TR:

That relationship with the community equipped Marguerite with a strong solid foundation.

Marguerite:

I grew up through the elementary and high school years, with all black teachers in the black community. And I could feel the desire for them to give us their best. And they wanted us to be sent into a world with our best doing our best.

I ended up in senior high school going to a predominantly white school on the other side of town. I deliberately chose that because I wanted to know what it felt like to have that experience. I was curious and interested,

When I did get to that senior high school, I felt like I was very well equipped, even though I began to hear stories that said we were marginalized, and that we were lacking.

TR:

Stories meant to weaken that foundation or penetrate her spirit.

Advocacy became more than a way to impact her community, it helped her realize things about herself.

Marguerite:

For me advocacy was about fighting for the underdog. And so it felt aggressive. And I thought it was very necessary and that there was a certain way that you had to go about it in order to gain the results that you were asking for.

It didn’t feel good in my spirit.

That anger and their venom and using it to ask for what you wanted. While it seemed to be effective, it was not a good space for me.

TR:

Over time, Marguerite came to realize that in the way she and
so many of us view advocacy, trained her to only consider what
was not working.

Marguerite:

it started to make sense to me that if that’s what you’re pointing out all the time, that’s all you’re setting yourself up to see. And so when things are coming, that are, what you do want, how will you recognize if all you’re focused on are the things that don’t work?

Sometimes the things that I’m wanting to experience, they reveal themselves in small ways.

The more that I’m open to understanding and realizing those smaller things, the momentum can pick up, but if I don’t recognize it, then how will I be able to enjoy it becoming larger in my space, in my experience for myself and for my community.

TR:

Yet only focusing on the things you want or those things that feel good can prove to be quite unfulfilling.

Marguerite:

I’ve got to own how I feel, and accept that as where I am. And recognize that I want to be in a space, that feels a lot better. But that causes me to have to identify, what is it that I’m asking for? And I’m telling you that that’s not been the easiest thing to do. Because even when I’m talking to people that I asked, What do you want, we even talk about what we want in the negative. I know most people can easily tell you what we don’t want, but ask them what they do want. It’s a very different conversation. And so that was not just a conversation for others. That was a conversation for myself, as well.

— Music begins, piano keys leading into a mid tempo smooth bouncy Hip Hop beat.

TR:

This really seems about knowing yourself. And there’s some real value in that.

Marguerite:

I’m getting to the space in the place where I have an opinion, I have a thought and it’s authentic.

You have a thought and an opinion and it is yours, no matter what I think about it, it is yours.

I do have the right to my opinions and my thoughts. And I want to be respected. So if I’m going to respect myself, I’ve got to respect you. Even if I don’t agree with you. I’ve got to respect that you have it. But that does not stop me from asking for what I want. That’s how you see it. And you can be very right. And I’m not telling you that you’re wrong. But I’m asking for what I want and what I need, which is a very different space.

I need to articulate and be really clear about what I’m asking for. So I have to keep asking, and keep defining and keep gaining the clarity.

I’m not recommending this as a way for anybody to go, I’m just merely trying to tell you what’s happening with me.

TR:

She really is on an exploration.

Her advocacy continues to have practical applications.
As the president of the At Large Chapter of the National Federation of the Blind in Maryland, she’s ready when necessary to respond to issues of particular concern to her community.

Marguerite:
We discovered that the state of Maryland was planning to discontinue bus transportation from Baltimore City. To the surrounding counties, for the most part, and they quietly were holding community meetings.

I was thinking about my community that I actually live in not just the blind community, but the community of Baltimore City, which is being affected. And I knew about a group that I been in connection with for many years, I would go there and talk to them.

TR:

The organization is called BDS healthy aging networks. Marguerite built a relationship with them over the years where she along with a group of members from her chapter would speak to the organization as a way to allow people to see into the community.

Marguerite:

I knew that they had gone virtual, I got in touch with the woman who runs it, Betsy Simon, and told her what I’d like to do. So she invited me to the call to share with the partners that met with her and the partners were different community agencies, city and state agencies, as well as community organizations and community leaders. And ask them to participate in the testimonies as well.

Well, I’m not exactly sure what happened. But that idea of dropping the bus service was discontinued.

TR:

There’s real power in organizing with those who share a mutual interest.

Marguerite continued attending the meetings of the network – which extends out to many different agencies and organizations. Their main mandate is advocating for older adults in the city.
They recently showed their ability to organize and get things done after the city made a failed attempt to help vaccinate older adults for Covid 19.

Marguerite:

One of the ladies in our group had been writing directly to the CVS is in the Walgreens saying, Look, we in Baltimore City want vaccinations and our officials are not helping us. Can you help us get vaccinated? So they were ignoring her letters and Walgreens somehow had these extra vaccinations, like 850 of them. They went to the Baltimore City Health Department and said, Listen, we’ve got these vaccinations. We can show up on Saturday with the pharmacists. You get the people.

This was on a Tuesday, the Health Department told them no, there’s no way we can do that. It’s not enough time.

They remembered the woman in our group who had been writing to them. They did shout it out to her. And she got in touch with Betsy Simon. And she sent a call out to everybody on her list. Can we do this? And so we said, yes.

TR:

With Some quick planning and putting people into action, they got it done.

Marguerite:

Advocacy, asking for what you want. And that’s what that woman did. She kept asking for what she wanted, in the midst of them saying, No, we can’t. And the health department did not help us, they said that they couldn’t do it. And after we did it, it showed that we could.

TR:

She continues showing up to Zoom calls. Reminding organizations to make sure their materials and information is getting to the low vision and blind community. She’s actually seeing progress in this area.

Again, the advocacy work teaches her things about herself and how that can benefit others.

Marguerite:

I think that the key for me is to take what I’ve been able to get in terms of training, philosophy and skills and so forth. And just come right back into my community and be a person in the community teaching from my example.

— Music Ends

If it helps the blind community, it’s helping the rest of the community as well. Those things are created and envisioned by the blind. And so we are contributors to what the society is and what it can become.

Music begins, a bouncy upbeat Hip Hop track.

TR:

Are you socially Reidsponsible?

— Sample from Blades of Glory:
“I don’t even know what that means.
No one knows what it means. But it’s provocative.”

TR:

It’s true, no one knows what it means, not even me, I just think it sounds cool!

Cool, like the Reid My Mind Radio Giveaway happening right now on Twitter.

We started in January on Facebook. Then moved to Instagram and during the month of March we’re focusing on the final platform, Twitter.
All you have to do to be entered into the drawing is like and retweet any of the posts I tweet out related to the Reid My Mind Radio Giveaway during the month of March.
So go on over and follow @tsreid and again, like and retweet any of the posts related to the giveaway.

Our social media manager, Annie, will gather all the names at the end of the month and we will draw a winner, which we’ll announce in April.

During the next episode in March, we’ll announce the winner of the Instagram contest.

Make sure you follow ReidMyMindRadio on Facebook and Instagram

Oh, wait, that’s being socially Reidsponsible!

Now, let’s get back to the episode!

— Music ends with a bouncing base drum echoing into silence.

TR in Conversation with Marguerite:
So during your first time on the podcast, you suddenly and quite nonchalantly dropped this thing about spending some time in India?

Can you share the story of how that came about? And what you actually did in India?

Marguerite:
I went to something in Baltimore called Blind industries and services in Maryland, which is a training facility for adults and older adults who want to gain skills and be able to manage blindness.

When I finished there, the director at the time sent me an email and in the subject, it said, only two days left.

TR:
She actually discovered and read the email the next day.

That’s when she found out she had one day left to apply to the International Institute for Social Entrepreneurs. It’s in Trivandrum, which is in the southernmost part of India.

Marguerite:

I got these thrill bumps all over me when I was reading it. It just filled me up.

You had to have it in, I think that day. I’m amazed at myself that I was able to do all that and I was able to submit it. And you know, they sent back and asked for some more information, I sent it to them.

And later on, they sent me a letter and told me that I was accepted and I was going to get a full scholarship to come there.

— Music begins, a dramatic introduction that feels like an eastern vibe that opens to a rhythmic electronic dance track.

TR:

Marguerite didn’t tell anyone about applying to the program.
That is until she received her acceptance letter.
p
Coincidentally, that good news arrived near her birthday. So when her family asked what she wanted to do, she was prepared.

Marguerite:

I want to go to an Indian restaurant.

When we sat down, we were talking and eating. And When they got to wishing me a happy birthday, I told them that I wanted to share something with them and told them that I would be going to India, and they were all shocked. They were like, Who are you going with? Who are these people? Bla bla bla.

Mind you, I’m totally blind at that point. I’m going alone , I don’t know the people, whether they met them online. And so they were like, oh, no, this, this, you’re not doing that. And they had all these what ifs, and no, they were really afraid for me. But something that I learned a while back and was able to practice is when you get an idea about something that you want to do, and, and you’re trusting that it feels good inside of you. That is not the time to share it. Because you’ve heard of dream killers. And they don’t even mean to be they were very good intentioned, but they will kill your dream before it gets off the ground.

TR:

Many of us have fallen victim to or have been a Dream Killer.

Perhaps one or two bodies.

Maybe you know some real serial killers. You know, those who just throw daggers at anyone with an idea or a plan to step out and try something new.

Chances are, they don’t mean to discourage. It’s more about a fear or lack of information on they’re part.

The point is, we need to protect our dreams, like they’re our babies.

Marguerite:

You can’t share it when it’s in it’s infancy, you got to let it mature. And so that’s what I did. And when it felt solid in me, and I’d worked out my own kinks about it and realize I had no fear and no reservations. So when they came with all that they had, it didn’t sway me because I had already worked it through, and I was solid and how I felt and so I let them go through what they needed to, as I continue to get myself prepared to go.

TR:

She received the news in July and left for India in January.

Marguerite:

I stayed there for a year came back in December. It was quite an experience.

I got to work with NGO’s, Non-Government Organizations. They’re sort of like our charitable organizations.

We worked with gay and lesbian organization.

In India, as you might imagine being a, quote unquote, third world country.
homosexuality is not something that is readily accepted.

With all of the challenges that we have here in the United States, the magnitude of it there is beyond the scope of what we can expect. It’s so dangerous. But these people are so adamant about being able to live their lives out loud, that they’re risking their lives for even just saying that they belong to an organization like that.

TR:

Wherever you go in the world, marginalized groups exist. The language and faces may appear to be different but underneath it all things look familiar.

Marguerite:
In India, lots of people wanted to bleach their skin.
— Music ends with a crescendo cymbal crash

TR in Conversation with Marguerite:
For the folks who haven’t seen, they may not necessarily know that the complexion of Indians are black.
I mean, some of them might not. Right?

Marguerite:
Yes. Yes, yes. Yes. And some of them are very dark in their complexion, and they want to be they want to be white. They want to be fair skin, it’s important to them, and so they do bleaching creams. I’ve heard of people who families would make these potions, so when the woman was pregnant, she would drink these potions that would help to ensure that her child would be fair when it was born.

TR in Conversation with Marguerite:
Oh, my goodness. Drinking it? Man, woof!

TR:

To get a sense of how much of an issue this is, Marguerite shares some description of a commercial on Indian television.

Marguerite:

It was a woman in a park, she’s walking with her boyfriend. She was darker complexion. And he was fair. And he sees a, another girl in the park. And she’s fair skinned. And so he drops the arm of his darker skin girlfriend. And he dances off with this fair skinned girlfriend. The darker girl is hurt and upset.
So she gets this cream, and she uses it for a prescribed period of time. And he sees her again, and she’s fair skinned now.
So he drops the other person, and now they’re happily ever after.

TR in Conversation with Marguerite:
This was a commercial?

Marguerite:
Yeah.
TR in Conversation with Marguerite:

On regular TV?

Marguerite 46:21

Yeah, yeah.

The idea was to go and fight against the companies that were making creams. And my thing was, well, before you can fight against the company that’s making the creams. I think we need to educate the people, let’s start with the children, because they were doing it with kids as well. And they were doing it with the boys as well as the girls. And so we went into the schools, and we were talking to them about melanin and for the schools that we went to none of them knew about melanin.

TR in Conversation with Marguerite:
Do you want to break that down a little bit? It’s well, just power of melanin.

Marguerite 47:21
Melanin is such a protective coating and that a lot of things can’t even happen without a melanin protection.

I remember, way back when I was much younger, hearing and reading about first the spaceships using the idea of melanin as a protective coating on some of their vessels.

Even here in this United States, even though we have it, there’s not a whole lot of talk about melanin and how powerful it is, and how wonderful it is.

TR:

You can tell people about Melanin, about a rich history where people who look like them weren’t colonized, robbed of their resources, but ultimately, it’s about self-love.

Marguerite:

My idea. And the group that I worked with, we felt like, it was just as important for individuals to decide that they wanted to embrace who they are, right where they are, and fall in love with that before, you can start telling a company not to sell bleaching creams.
Until people are educated and can find a way to feel good about themselves. It to me is a moot point. I don’t think you can do one without the other.

TR:

This problem isn’t at all unique to India. It was a bigger thing here in the states, several islands in the Caribbean including Jamaica and the Dominican Republic.

( FILTERED VOICE:) White supremacy is a hell of a drug!

— Music begins, an inspiring ambient track that grows as it progresses.

Marguerite:
We’re not supposed to be the same. And because one group is one way and another group is a different way, does not at all indicate that you are better than or less than the next group, although we use that as our vehicle to control and manipulate and because it has worked so well. It continues to happen that way. But we can’t just throw our hands up, we have to I think, continue to help people understand that it’s okay to embrace yourself where you are.

TR:

Embracing yourself as in the color of your skin whether you’re in India, Africa, the Caribbean or here in the states. The texture of your hair, your sexuality and yes your disability.

It’s what makes adjusting to disability so challenging for many. You may not even realize how you felt about disability and that can then impact how you feel about yourself.

Marguerite:

When I became blind, I realized that I had some very negative thoughts and feelings about blind individuals that I did not realize I had. I realized that when I saw a blind person, I felt something that I didn’t bother to identify. But what I did recognize was that I was glad it was not me. And that was with any disability, or anything that wasn’t held up as a beautiful thing, by the society norms, and that even meant, the color of my skin, the texture of my hair, all of that was a part of it. And those were feelings that were held inside in secret, depending on what company I was in. And so blindness exposed me not just to the blindness, but to the other beliefs that I was holding. And what I also discovered was that I could not really know what I was holding on to, unless I had an experience that brought it out. Because I tended to think that I was who I wanted to be not able to see who I actually was being.

As an adult, I had to find my way to that. I remember having to make a decision, a literal decision, that I wanted to live as a person with blindness. It was very different from living as a person with low vision. Total blindness was a totally different experience for me! And so I had to make a decision for me!

TR:

You know this isn’t about which level of visual acuity is more challenging, right?
it’s not a competition between disabilities, in fact, it has less to do with any external factor at all.

Not confronting the question was the source of anxiety.

Marguerite:

I just remember saying to myself, I have got to make a decision about how I want to be because
the anxiety was because I did not want to be blind. But I’m blind.

I really did know that the question for me to answer was, do you want to live as a blind person, and I realized I had not made up my mind, which also contributed to the panic attacks that I was having. I was scared to know what I really thought.

that was a very traumatic time for me. And I went through that solo, because I couldn’t talk to anybody about it. And I had tried to find a counselor at one point, but I couldn’t find counselors that knew blindness from the experience. And so I didn’t trust them enough to share that.

I had done enough spiritual practices during my life, that I use the tools that I gained. And I made a decision that I did want to live. So here I am.

TR in Conversation with Marguerite:

Here you are! (Chuckles)

Marguerite:

Here I am… Yes…. (chuckles)

— Music ends into momentary silence

— Music begins, a lively up beat R & B drum opening to a happy groove.

TR in Conversation with Marguerite:

That’s right, that’s right!

Marguerite:

Yeh! (Reflectively says) Here I am!

TR in Conversation with Marguerite:
Marguerite, because of all the things you do, to advocate, coming on a podcast to share and help others, doing your thing with disability. You Ms. Marguerite are an official member of the Reid My Mind Radio family.

You was already official but I don’t know, should I make more levels of officiality?
The two share in a silly laugh.

TR:

I truly respect and appreciate Marguerite for her honesty and sharing her wisdom and insight that I just know, will be of real value to many.

In fact, check out how generous she wanted to be when I asked her to share contact information.

Marguerite:

So you can call me you can call my mobile number which is 443-271-1668

TR in Conversation with Marguerite:
Marguerite! This is on the internet. Are you sure you want to put your number out there? Laughing…

Marguerite:
Oh no, no, I guess I don’t, I guess I don’t…

They can go to the NFB page NFBMD.org.

TR:
Orr go ahead and email her and tell her how much you appreciate her valuable perspective!
Marguerite:

MWoods719 at Gmail.

TR:

I don’t think there’s anyone I’d rather have kicked off this season with more than Ms. Marguerite Woods.

Did you listen between the words?

(Filtered Voice:) Dude, I really don’t think that’s a term.

She shared valuable ideas. Some were very practical like;
suggesting we create our toolkit to manage aspects of our lives.

And others were more philosophical like;
– exploring life through blindness and other identities…
– Choosing to think about and speak in terms of what we want.

That to me is so Powerful and honestly feels important for me where I am in my life right now.
You know, let me put that into practice right now.
I want you to share this episode with at least one other person. And let them know they can follow or subscribe to the podcast, just as you did, to make sure they don’t miss any episodes.
I want you to tell them, they can do that wherever they get podcasts.
Let them know they can find transcripts and more over at ReidMyMind.com.
And of course, make sure they know , that’s R to the E I D…
— (D! And that’s me in the place to be!, Slick Rick)

Marguerite:

Like his last name!

TR in conversation with Marguerite:
Ouu! I like that!
(The two laugh)

Audio: Reid My Mind Outro

Peace!

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