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

Audio:
https://www.dropbox.com/s/fjtp3f1mwxog5gb/Draft-Nefertiti-001.mp3?dl=0

TR:

One Two! One, Two!
Greetings, beautiful people. And welcome back to another episode of Reid My mind radio where we continue with our second season of 2022. Flipping the script on audio description.

[drum beat fades in]

If you’re new here, it’s very nice to meet you. I’m Thomas Reid, host and producer of this podcast. And I’m glad you found it. If you’ve been rocking with ReidMYMindRadio Let me say sincerely and from the bottom of my heart. Thank you. And I truly appreciate you.

Have I ever told you how much I enjoy hearing from listeners? Sometimes it’s just finding out how you learned about the podcast. Some people like to let me know they enjoy it, and why. Others tell me a bit about who they are just let me know they support what we’re doing here.

All of that is fantastic. And I truly appreciate it. If you ever want to reach out please reidmymindradio@gmail.com is the email address. Feel free to holla at your brother.

I don’t know if y’all notice. But the Reid my MindRadio family is truly around the world. We’re not just in the States. We get some love in Europe, Australia, New Zealand, Africa. That’s right. We on the motherland. Oh, yeah, and I’m definitely not forgetting my people up in Canada. I truly rock with y’all Canada.

I’d love to hear from more of my Caribbean brothers and sisters.

[shouting over a beat]

Puerto Rico! DR! Jamaica! Trinidad! Haiti! Come on. I know y’all out here. This is a podcast so we don’t deal with boundaries. We deal with energy. And there’s no border patrol for that. We don’t need no stinking passports.

Reid My Mind Radio family! Come on! Have you told friends about this podcast? What kind of friend are you just holding all this goodness to yourself? Sharing is caring. Baby girl. Tell them what time it is.

audio clip of TR’s youngest child:

Let’s start the show. One, two, three, four.
[RRMR intro]

Nefertiti

Hi, I’m Nefertiti Matos Olivares, I am a bilingual voice talent and professional audio description Narrator quality control specialist and writer. I also do a lot of work in museum accessibility. Everything from writing scholarly articles, to representing my Latino heritage at the first of its kind, Molina family gallery, at the National Mall, the Smithsonian Latino Center. I advocate a lot for health care, assistive technology, Braille literacy. These are our lifelines on a lot of cases.

I spent a long time teaching folks sort of helping them, even the playing field in their own lives a little bit through technology too. I keep busy,

TR [singing]:
She’s a hustler, baby, she just wants you to know. It ain’t where she’s been, it’s where she’s about to go.

[talking]

If hustler has a negative connotation for you, and swap that with entrepreneur, go getter driven, motivated, for Nefertiti it’s rooted in the quest for more access.

Nefertiti:
I live and breathe this sort of thing every day, the accessibility of a world that was not built for me, and having to constantly make my own space, just about everywhere I go. I believe in my innate worth as a human being. I know that I have a lot to offer. I claim my power and my value and I take that with me everywhere I go, and hopefully make waves so that other people behind me can trump on into the river to and get what they need to get out of this life and be their best selves. As cliche as that may sound.

TR in Conversation with Nefertiti:
Can we talk a little bit about early life experience within accessibility, if you want to mention anything about your blindness.

Nefertiti
I was born fully sighted and everything was okay till around three and a half years old, I started exhibiting some odd behaviors. I had an astrocytoma, a brain tumor, and it was stopping the blood flow to my optic nerve. They were able to remove it ultimately, but it came at a price.

TR:
The result was blindness and no other complications. Growing up in New York City. Nefertiti attended schools for the blind through high school.

Nefertiti:
I knew there was a world outside of that. I have a sister and I have cousins and I knew there was mainstream stuff, but I kind of enjoyed being a big fish in a little pond. So I didn’t feel like I was missing out on anything in the blind schools. Plus, I could be in sports in a way that I knew I was never going to be allowed to be in a mainstream school. In the schools, I was able to be a cheerleader and Run, track and be on the swim team and all these things. Then college came around. And it was a very different experience, I had to really reckon with my blindness now that I wasn’t protected anymore now that I wasn’t around everybody else being like me.

TR:
Unfortunately, this story is not unfamiliar, leaving the comfort and generally accessible environment of the School for the Blind, and answering a college, Mount St. Vincent’s about an hour and a half from home. Nefertiti first realized not everything is built for her.

Nefertiti
By the time I got to college. Braille wasn’t a thing. This was a private school, they barely had any funding for a disability office, heck Thomas, the first year I was there, there was no disability office, it came into play because me and another blind student joined. And then there was a student who identified as having a learning disability. And so they had to put something together.

TR:
She was forced to largely find her own way

Nefertiti:
To figure out what technology would scan my books for me, learning screen reading technology, more than I already had in high school, upping my typing speed, I had to do that pretty drastically because I was doing a lot of papers and even just the campus itself. It was some such Rocky, hilly terrain. And at that time, I was refusing to use my cane. I never used it in the blind school because in the blind school, I was considered somebody who had some sight. But in the real world, I’m blind. In a setting like that one. In the dark, especially, I had some really close calls, and some really kind of dangerous situations I found myself in. But because I was too proud, and too embarrassed, and too ashamed. I didn’t use my cane while I was in this school.

TR:
Living on campus, not using a cane definitely still has some valuable lessons.

Nefertiti:
That stress I put myself through just because I refuse to put that cane in my hands and how much easier it would have been for me, if I had accepted myself as a blind person back then.

TR:
Then the image of Nefertiti that I have is one of a strong, confident, proud woman

Nefertiti:
That finally did come. But I put myself through quite a bit. Before that happened. I had internalized a lot of ableism in my life, I just decided something had to give. And if this is the body, I have, and these are the things I have to put up with.

TR in Conversation with Nefertiti:
Things like additional health challenges and relationships.

Nefertiti:
And that’s when I put myself in therapy and went back to school and got myself in better shape. I was a triathlete for a time, there’s got to be better. And if there’s going to be better than I’m the only one that can make that happen for myself. That’s really what has transformed my life and to what it is today.

TR:
Today, Nefertiti is playing a role in flipping the script on audio description. That’s both on this podcast and more so by using her voice in various ways, as far as AD goes.

Nefertiti:
And then pandemic, that’s what happened, the pandemic happened. I’m not unique in this, a lot of people had found themselves rethinking and reevaluating situations in their lives, and I was no exception. And one of the things that I found myself really thinking about was my job at the library and the fact that I was there already for seven years.

TR:

That’s the Andrew high scale, Braille and Talking Book Library, a branch of the New York Public Library over in my old stomping grounds on 23rd Street, shout out to Baruch College, City University of New York.

Nefertiti:
I was teaching blind people mostly but anybody with a disability and mainstream folks to how to use technology. In the case of blind people and people with low vision, it was teaching them how to use the accessibility features in their mainstream devices like iPhones and things like that. I would also teach screen reading technology.

TR:
She facilitated workshops on HTML code, working with Google products, like docs and calendar, iOS apps, and even more lifestyle centered workshops on getting more active. Oh, and by the way, that’s an English and Spanish tambien.

TR in Conversation with Nefertiti:
And you did one on games because I attended it.

Nefertiti:
Ah, that was a fun one on games that you could do on iOS, like accessible gaming.

TR:
Over her seven years working at the library, I imagined she was able to really directly contribute to helping lots of people not only learn their technology, and more, but really provide a foundation for their career and personal pursuits, but she was ready for something new.

Nefertiti:
Honestly, I really believe in making room and making space. I wanted someone else to have my job. I don’t believe in scarcity. I think that there is a myth around scarcity that once you have you need to hold on for dear life, or that you need to continue accumulating. I think there’s enough for everybody that goes for everything. I just got to a point where I felt like I’ve learned everything I’m going to learn here I’ve gone as far as I’m gonna go. I want to leave this open, hopefully even better defined than when I started and with more possibilities for growth for the next person to come in.

During the pandemic, I did a lot of soul searching and a lot of therapy. Therapy has been a constant thing in my life since I started taking it seriously. Accepting the fact that I wanted to do something else, I wanted to leave a space for someone else to be employed a blind person, a person with a disability, leave an employment opportunity open for someone else to come in with their own flavor and their own view on things to continue the work because it’s very valuable, very important, crucial, beautiful work. And I decided to pursue a passion. And that passion is specifically for audio description, but more generally, voiceover work.

TR:
I know what you’re thinking, leave a good job, you’re disabled 50 to 75, maybe 80% unemployment rate, anywhere on that spectrum is bad. She admits it was scary.

Nefertiti:
Again, the pandemic happened. And I was like, let’s get real here, you’re not really happy. And I didn’t want that to affect my patrons. And I didn’t want that to continue affecting me. So I did take the jump, I did leap. And I’ve been pretty fortunate that so far it’s working out really well. But it was kind of scary to do. But I think that a lot of things in life that are worthwhile are frightening, but still worthwhile

TR:
Pursuing a passion, you won’t get any argument from me on that. Since taking the leap. Nefertiti has been doing AD work on projects like Netflix original short film, Heartshot. New York Times, op docs selection, My Disability Roadmap, and several other projects, including the Jennifer Lopez documentary, titled halftime, currently on Netflix.

Nefertiti:
AD is a bit of a gig economy, unless you’re employed at a company, staff writer or staff narrator and they can make a living with that maybe as a nine to five but audio description in my life, it’s very much a gig economy. That’s something that I think is true for any type of arts job, you have some boom times and you have some downtimes. But I thought that audio description as my passion was a little too narrow. So then I decided to explore outward and sort of make myself even more employable by trying to do more generalized voiceover work.

TR:
The gig economy, in general is a hustle. You have to constantly think about and act on generating your next assignment. It’s far different from being an employee. You’re more like a farmer. You’re cultivating the land, planting seeds and watering them. You respond to nation and do whatever you can to assure a rich harvest. Not bad for city kid, right?

Similar to farmers, I’m not talking about those corporate conglomerates. The harvest doesn’t automatically mean a set payment. That often depends on other factors, many of which are bogus, but out of their control in the freelance environment, those seeds planted generate opportunities to work, which should lead to payment. I say should because well you might be surprised how often free or extremely undervalue labor is expected. Honestly, that’s another episode yo, if you have stories about being expected to work for free, email me reidmymindradio@gmail.com. I need to hear from you. Seriously.

Nefertiti:
Can I go here? Is it too sensitive? I don’t know.

TR in Conversation with Nefertiti:
You go wherever you want to go.

Nefertiti:
Okay, the pay in the audio description space is so unregulated, you could work for four or five different companies and they have different methods of paying some pay by the minute, some pay by the hour, some pay by the project, and some pay, not a lot. Some others pay out of other countries. And so by the time you convert, it’s not a lot of money here in this country. Hopefully the audio description viewer gets a quality product and enjoys the show, and has all sorts of access. But in the meanwhile, the folks who made that happen, are not even able to make a living.

TR:
That’s why you have to be a hustler, someone who can find multiple opportunities to make use of their talents.

Nefertiti:
I had the real privilege of going to Montclair State University to present to our lecture/workshop for Professor Maria Jose Garcia Vizcaino. She is this professor of language studies. And she’s built into her curriculum, this entire semester of audio description. It is a beautiful example of what’s possible when somebody is really dedicated and believes in something.

TR:
Hey, stay tuned to hear more about Professor Maria Jose in a future episode.

Nefertiti:
I lectured for an hour, took questions and answers from some really engaged, excited students. We broke into a hands-on workshop, I brought a movie trailer, which only really consisted of some music and some drumming. And I challenged the students to break into groups and describe the first 30 seconds of the trailer. What we had as a fun thing was somebody of the group designated to stand up and do the description, with the trailer playing in the background. And once that was all done, and we discuss what was good, what can be improved upon, we watched the trailers which had been already described in both English and Spanish to give the students an idea of how did you compare to a professional rendering, and I’m happy to say that they compared pretty well, Maria Jose, you’re doing a great job with your students. And again, it was a real privilege for me to be able to do that.

TR:
In addition to workshops for those interested in AD she’s presented to film students and more.

Nefertiti:
I participate on panels, I moderate panels, I facilitate workshops, did it in my tech job and continue to do it here. It’s one of my favorite aspects of this field that’s getting more and more recognition.

TR:
And don’t forget, that’s in English and Spanish tambien.

TR in Conversation with Nefertiti:
In addition to us both being blind at narrators, we both come at this from intersectional space. So, ¿tú eres Latina? ¿Dominicana?

Nefertiti:
Sí! Dominicana! Me gente!

In terms of my more Latino side, I actually learned Spanish before I learned English. Some people have a hard time believing me, but it’s true. I’m first generation born American but I’m very Dominican. So I’m very lucky, not something I’m very proud of. Unfortunately, though, there doesn’t seem to be much by way of Spanish audio description, quality Spanish audio description, it’s getting better slowly but surely. But historically. And still right now, at the time of this recording. Spanish audio description is nowhere near as buttoned up as English audio description is and some people have complaints about English audio description. So imagine the condition of Spanish audio description. It is nowhere near as equitable as English audio description, this idea of more Latinos being on screen in movies and in TV shows documentaries about us. And that’s fantastic. We’re proliferating the cultural consciousness. But wow, I hear a lot of white people describing this stuff. And it’s like white people. Hey, you got enough to describe where are my Latinos at.

[In the Heights trailer begins playing in the background]

Nefertiti:
In the heights. It is by Lin Manuel Miranda, he of Hamilton fame. This was his big claim to fame before Hamilton actually. And it’s a play based in Washington Heights right here in New York City. I’ve got family living in Washington Heights. The person describing it in the American version, because there is also a UK version, I believe is a white woman. And I don’t agree with that choice.
She has a lovely voice, very clear, her diction is beautiful. She does a wonderful job. This is not a reflection on her as an artist, a narrator. You mean to tell me there wasn’t a Latina woman or even a man that could be casted to have done that job. I have a really hard time with that. That speaks to the cultural competency. Like we’re seeing more diversity on screen. The audio description should also reflect that diversity. It should match not just the script to the vision of what the director is trying to make happen trying to engender in viewers but also the narrator who is saying these things. Being part of that community and yes, the writer should also be I think of that community.
If I may give an example of the harder they fall. Excellent. I think audio description down to the point where they describe microbraids. They describe the different skin color. A really good example there of writing that clearly researched everything from what to call the different skin tones to the different hairstyles, all things that are of important to blind people of color other people to I’m sure, particularly since historically we haven’t heard about us, we haven’t heard about ourselves, having people who match the content to make a quality, audio description script and narration is, I think, crucial, and really speaks to the cultural competency that is still lacking in a lot of ways in this field.

TR in Conversation with Nefertiti:
Personally, I like to see more people in the blind community, more people of color, talking about this issue. Do you hear the conversation?

Nefertiti:
I really don’t. And I think that’s part of this idea of, well, let’s just be grateful to even have it at all. Let’s not stir the pot, because they know that audio description is a thing. So many people aren’t aware that audio description exists? I know I live in sort of in this bubble where everybody knows what audio description is, of course, right? I’m in the field now. And I’m a consumer and all this and all my friends know about it. My family knows about it. Everyone I talked to if media comes up, I talk to them about audio description. So in my world, it seems like everybody’s aware. But in the grand scheme of things, there are many, many, many who don’t even know that this is an option for them. And those who do a lot of them don’t even question the fact that they don’t hear details such as hair texture, or skin color, or different types of clothing, etc. They just default to this all must be a white narrative. Unless we hear like an accent or something like that. We may not know.

TR:
As consumers of audio description. It’s our place to provide critical feedback. That includes those things we like and don’t.

Nefertiti:
Access access, access access to information. I want to hear about skin color. I want to hear about set design, I want to hear about lighting. I want to hear about steamy sex scenes. I want to hear about gender stuff that’s going on. If there’s space for it, I want to hear about it. It’s getting better. But historically, audio description has been very sanitized and in my opinion, almost infantilized. I don’t know if it’s because there’s this image of like, oh, protect the poor blind people. I don’t quite understand why that’s the way it’s been. People are waking up and people are listening and taking note to the fact that we are well rounded individuals, we are of this world. And so race does matter. representation matters.

TR:
Back on the professional side of AD networks, Nefertiti and I got to work together on multiple projects, including an appearance right here, where she provided the audio description in a YGBD episode featuring Latif McLeod. She was the AD narrator during the ACB Awards Gala, which I had the honor of hosting, and I had the privilege of narrating her AD script for a film by Syed Dyson titled Say His Name: Five Days for George Floyd.

Big shout out to Steven Lentinus, one of the films composers himself an AD consumer. He got the buyer from both sides to produce an AD track for the film. He contacted Roy Samuelson who curated the all blind scenes to produce the track.

Nefertiti:
This was a really fascinating opportunity. I as the writer, Serena Gilbert as the quality control specialists, the one and only Thomas Reid as the narrator, a combination, I believe, a team effort between Byron Lee and Chris Snyder, as the engineers, all blind folks, we have the opportunity to come together as an all blind team to make this documentary accessible by way of audio description. And I think we did that beautifully. It is something that I will always be honored to have been a part of, especially holding the role, the controversial role of being a writer, while blind.

TR:
It’s not the first time we talked about this here on the podcast. I think I’ve been talking about this idea before I even knew of a blind person writing AD. It’s understandable that some people, especially those who are not blind, would be curious as to how this is accomplished. I can see how other blind people would be interested to. What’s not cool is the fact that it became controversial.

Nefertiti:
Controversy came from both sides from the sighted folks who I totally expected to get some blowback from, but also my fellow blind people who couldn’t fathom how it was done. When you don’t understand something, I guess it’s human nature to question it or to maysay it or doubt it, or what have you. But through the use of technology and a sighted assistant and my skills as someone who writes, I was able to do it. And I’m very proud of the job that I did. Blind people, yes, they can write visual experiences.

TR:
I would think it would hurt when it comes from inside the community.

Nefertiti:
Yeah, when your own community, the community, you’re trying to represent the community, you’re trying to uplift the community, you are trying to model what’s possible for, says to you, you can’t do that. When your own community turns the ableism that the whole world slaps you with every day. That is very hurtful. And that is very discouraging. But for one thing I had already committed to it. And when I commit to something I see things through. I mean, there has to be a real tragedy for me to not follow through on something I committed to, like, My word is my bond. That’s true. I wasn’t going to let you and the rest of the team down. And I wasn’t going to let myself down. Yeah, it hurt. It hurt. There were Facebook posts and things on Twitter, and even people in my own life questioning and the like, and I just I decided I was gonna turn it around.

TR:
From my conversations with Nef. I don’t think she has a problem with questions. It’s more of the assumption and the insinuation or downright claim that she can’t, which by the way, you know, translates to we can’t.

TR in Conversation with Nefertiti:
You were getting negativity before you even did it?

Nefertiti:
Yeah.

TR in Conversation with Nefertiti:
I didn’t know that.

Nefertiti:
Yeah. Ableism is real and internalized. Ableism is real. I got a lot of positives too. But the aspect of all this, that hurts is the negative coming from your own kind, if you will. Very sad. It was a bit of a rude awakening for me. I’m glad I had it, because I’m definitely awake now. But at the time, yeah, it was bewildering. Honestly.

TR in Conversation with Nefertiti:
Yeah, sorry, I didn’t deal with that. But at the same time, it’s one thing to deal with it when it’s done. But when you’re going in, like you going into the fight, quote, unquote, and everybody thinks you can’t do it, you can either start to believe that and it messes your whole stuff up. Or you can take that as fuel. Let’s see, I got this, I’m gonna show yall.

Nefertiti:
Belief itself I think is is a big part of it. The thing is that it was published early on to Facebook. And I was alerted to do you know, what’s going on on Facebook? And there are these comments available in. I log on, and I see this post and I see these comments. And I’m like, Okay, I’m in the fishbowl. Now, I guess I had to deal with it. I was fielding these questions and these negative comments and dealing with a lot of anger as well that I didn’t want to let show because that’s just not professional. I’m not about making enemies or what have you, a lot of keeping it to myself and venting to family. And having a quality product. At the end of it all. People out there if you have the opportunity, don’t squander it. Check this documentary out. It’s really beautiful work and a real example of what’s possible when folks come together with a shared passion and skills and a dedication. And we just happen to be blind. Big deal.

TR:
I have to tell you, I respect the way Nefertiti handled this situation. She’s classy. Word to the wise, be careful what you say on social media. Not everyone is as classy. Just saying.

TR in Conversation with Nefertiti:
What did you take away from the experience?

Nefertiti:
Sometimes when you are trying to like maybe break a wall down or, or do away with a barrier or do something unorthodox. People who are in this field, who you would think are less encumbered by ableist thoughts and ablest ways of carrying themselves, a superiority complex. There were a couple of people who showed their real colors, I think throughout that situation of what, a blind writer That was a lesson for me to that just because you’re doing something that doesn’t mean that you are necessarily of that thing.

TR in Conversation with Nefertiti:
You and some folks created a Twitter group for AD. What’s that all about?

Nefertiti:

It’s called the audio descriptions Twitter community. If you use the website and the Twitter app, you can participate in communities and these are spaces where people come together who are of like mind and I and my partner cofounded the audio description Twitter community and this is a pretty rapidly I’m very proud to say growing place for all things description, audio description, image description, self description, we want to know about all the panels the latest what we call #ADNews. Some companies announce oh we just did this, we just did that now on Netflix with audio description now on Amazon without a description etcetera and so we post that we post reviews of audio description that we’ve seen. We talk about the quality of audio description everything from mono audio to surround sound, all that sort of thing, jobs as well, in audio description, get posted on there, classes. It’s for all things ad and it’s on Twitter. Please join us. You just search for audio description.

TR in Conversation with Nefertiti:
I’ll link to the group on this episode blog posts at reidmymind.com.

Nefertiti:
Whoever you may be professional consumer, it doesn’t matter we want you.

TR in Conversation with Nefertiti:
continuing with that energy of sharing. Nefertiti offers advice for other blind AD enthusiasts interested in pursuing opportunities in the field as well as for advocates.

Nefertiti:
Be aware of what you’re getting into. It’s beautiful work. But like with anything, it does have its pitfalls, prepare yourself for those. But also really focus and celebrate your successes and improve on your craft. If you’re a voiceover artists coming into this, keep studying, keep learning. If you’re a writer coming into this, study other people’s work, and if you’re a consumer, consume as much as possible, let these companies know that you’re out here. Let them know what’s going wrong, but also let them know what’s going right. Remember, accessibility is a human right and part of accessibility is access to visual content. And audio description is one of the best ways to make that happen for us. We need to advocate for it. We need to through our collective voices amplify our cause. We are here and we are worthy.

TR in Conversation with Nefertiti:
Where can people learn more about you follow you, find you.

Nefertiti:

You find me on LinkedIn. I’m Nefertiti Matos Olivares. I’m on Twitter at Nef Mat Oli. Email me if you’d like to NefMatOli@gmail.com.

TR in Conversation with Nefertiti:
That stands for Nefertiti Matos Olivares. All right. If there’s anybody out there who doesn’t realize this, let me let you know right now. Nefertiti is an official member of the Reid My Mind Radio family do not get it twisted. She is official!

Nefertiti:
And I got the t-shirt to prove it!

TR:
In addition to freelance work, Nefertiti is a part of the social audio description collective. Thats a group of diverse individuals who write QC, narrate, record and mix audio description for a variety of projects.
You can check out the episode featuring social ad from the 2021 flipping the script season, which I’ll link to on this episode’s blog post.

We’ve grown since that episode. Yeah, we. They had rule for our brother, and I’ve been wanting to hang with them for a while, a bunch of go getters. I’m just really honored to be a part of the collective.

I hope you all really felt the vibe of this episode. I’m sure many of you are contemplating breaking out on your own moving forward with your passion. Of course, be smart about it, but also be brave. That doesn’t mean you won’t have fear. It just means that you’ll do it anyway. On that note, I want to send a big shout out and thanks to my guy, Tony Swartz. For the audio editing assist with this episode.

I’ve been a bit nervous about finding a team to help with some production but Tony honestly made the process fun and easy. What the heck was I scared about. You know, it’s nothing to be scared about subscribing to read my mind radio. We’re available wherever you get your podcasts. In fact, we’re even available where you may not get your podcast. I’m talking about YouTube. For those who like to consume content on that platform with no visuals just the podcast artwork and the audio.

We’re available via your smart speaker too just ask it to play Reid my mind radio by t Reid on your favorite podcast app transcripts and more over on reidmymind.com. Well actually this could be the scary part you have to make sure you spell it correctly that’s R to the E… I… D.
Audio sample: (D! And that’s me in the place to be. Slick Rick)

Like my last name.

[outro music]

Peace.

Hide the transcript

— Music begins – A drum solo that loops, stops DJ scratch into a cymbal crash.

My name is Thomas Reid, host and producer of Reid My Mind Radio, the podcast bringing you compelling people impacted by all degrees of blindness and disability.

I’m excited to bring you today’s episode so I’m not going to say much in this introduction.
However, I know you’re going to dig what we’re about to get into so I’d like to encourage you right now to just go ahead and follow or subscribe to the podcast.
Seriously, what are you waiting for! Whatever app you’re using to listen right now, there’s something that says, follow or perhaps subscribe.
Hit that to make sure you don’t miss an episode.

I’ll take it from there!
— Reid My Mind Theme Music

Adriana:
Hi, I’m Adriana Mallozzi, founder and CEO of Puffin Innovations, we are creating hands free access to consumer electronics for individuals with limited mobility in their upper extremities. My pronouns are she and her. I am a Caucasian woman with a round face, ear length dark hair, and wearing a black T shirt with the words not impossible written across the chest in white and I am in a power wheelchair

TR in Conversation with Adriana :
Why did you wear that shirt today?

Adriana:
It really represents I think my attitude with regards to what I want to do in life.

I’ve never been the type of person to take no for an answer. I’m realistic. I’m not a surgeon because I can’t use my hands.

It just really resonates with me and my attitude. And what it means to be a proud, disabled person showing that nothing can really stop you from doing whatever it is you want to do.

TR in Conversation with Adriana :
Can you just summarize your experience with disability?

Adriana:
Sure. During the birthing process, I stopped breathing. So the lack of oxygen caused brain damage, hence, I have cerebral palsy. I’m a spastic quad and I use a power wheelchair.

CP varies so much. It manifests in so many different ways that you would never know from one person to another, that they have the same diagnosis.

TR:

The diagnosis is what it is, but the person is who they were in their past, who they are in the moment and who they become in the future.
In each of those periods of time, there are things that impact a persons way of thinking.
Two things stand out about Adriana’s past that influence her belief of what is possible.

Adriana:

I am a child of immigrants. So I grew up going to Italy, to visit family, I still have first cousins there. Growing up, we would go spend the summers to see my grandparents. So travel was a big part of my life.

TR:

Adriana’s mom worked as a real estate agent and travel agent.

Adriana:

Just because it gave her the flexibility, she needed having a young family, especially for me as a child with a disability. She’d always be running around, having to take me to PT or OT or whatever.

She would win a trip for to, and then she would add my sister and I and we get to travel.

We went on cruises, and we got to go to Bermuda.

— Sound of an airplane taking off.
— Music begins – melodic horns slowly blow as a woman vocalist sings “higher” leading into a kick dram and a mid-tempo hip hop beat.

So I think it was just very inherent, it was in our blood. Traveling is just something that we love. My sister has made it into a job where she gets to travel around the world and experience a different culture

TR:

That’s her little sister, Mikaela. Professional dancer and four time EMMY Award winning host of her own travel show, Bare feet with Mickela Mallozzi.

I guess traveling without shoes is dangerous. (I don’t think that’s what’s she’s doing.)

Traveling as a power wheel chair user comes with some specific challenges.

Adriana:

When I travel, especially overseas, I don’t bring my power chair, just because it’s not as accessible in other countries. And it’s just easier to have a manual chair, when most of the countries are not wheelchair accessible, especially my own family’s home, my grandparents, its hundreds of years old, it belonged to my great, great grandparents and you know, it’s just not accessible. So I would travel with my manual chair, and when I’m in my chair, I literally can’t do anything myself.

TR:

Contrast this with her first experience taking her power chair overseas.

Adriana:

Also, the first time I flew overseas without a family member, I brought my PCA and I had to figure out all the logistics on my own.

That was the first time that I had ever done that in my life and it was amazing.

They really put a lot of thought into design with accessibility in mind.

You know how here, the elevator buttons are all literally at the door. If you use a wheelchair, you really can’t reach those buttons by the door because your foot rests are in the way and you can’t get close enough. Well, in Germany, all the buttons are on the side, on the wall. So you can easily reach them.
They also have not only a button to call the elevator at the door itself, but they also have free standing posts. So you can angle your chair in any direction and hit it however you can hit it. They did the same thing with automatic door openers, as well. And so I was so independent in there that I literally dreamt about being back there when I got back home.

TR:

Aware of the problems that power chair travelers experience, Adriana had a plan.

Adriana:

We bring a big roll of that wrap. How they wrap pallets? you know that plastic.

As soon as I get out of my chair, we put anything that are external to the seat of my chair, we put it in the seat of my chair, and then literally wrap my chair.

And so that has worked.

TR:

On the way to Germany at least.

On the return trip, as soon as they finished wrapping the chair,
Adriana and her PCA were told to unwrap because the chair needed to be tested.

It was taken but no one would speak with Adriana or her PCA.
Nervous about missing their flight and subsequent connection, they finally learned of the problem.

Adriana:

They’re like, Yeah, your chair tested positive for explosive.

We had to wait for the police to come. And then they were like, You need to take the battery. I was like, you can’t take the battery out, you don’t take the battery out.

They literally tried to tear out the battery. Like Luckily, they couldn’t figure out how to open anything. But they had snapped pieces. So there were broken pieces in the seat of my chair because it was like they were clawing to get to the internal electronics of my chair. I think it would have been worse if it wasn’t wrapped.

TR:

The dream of independence for people with disabilities often includes some nightmares.

Adriana:

They put my chair on the lift from the gait of the plane to load it down below.

and a person who was loading bags, he was literally throwing in like chucking things on top of my chair. And I was having a heart attack. I could see it through the window and I’m like, oh my god. We definitely took pictures and videos and my chair was a little broke like it wasn’t working properly and you know these chairs are 500 pounds so it’s not like it’s easy to push it.

TR:
joy and pain of traveling as a disabled person!

— Music Ends

The second influential component effecting Adriana’s belief of what is possible? Early exposure to technology.

Technology>
Adriana:

I began, PT and OT, or physical therapy and occupational therapy for those that don’t know what PT and OT stands for. at a really young age, I was diagnosed shortly after I turned a year old around 12 months or so. And soon after, we were sent to Easter Seals.

It was my OT who introduced me to a piece of technology that allowed me to use the computer, for the first time to do anything for the first time independently.

This was back in about83 or 84. I was about maybe seven, eight years old.

All I did was type, I type my name, and maybe some numbers. But just being able to do that, and be able to do something by myself for the very first time ever in my life.
It really hit me at that moment. I was like, wow, technology is going to be the key to my independence. Technology will be the way I will be able to do everything I ever wanted to be able to do.

TR:

And then there’s the DIY, Do it yourself attitude.
Adriana:

my father was in construction, he was a carpenter. I would always see him build. I think I got that problem solving. sort of mentality. Most people with disabilities, we have to adapt on the fly all the time. We have to figure out ways of doing things that the average person does not. And we always have to be at least two to three steps ahead. There has to be a Plan B, C, D, in case, X Y and Z goes wrong.

TR:

And when they go wrong, understanding the need to advocate for yourself.

Adriana:

My parents really had to struggle financially to get me what I needed, like the basic things that insurance considered luxuries like a bathing chair.

I can’t sit up by myself. So until I got that chair, I had to lay at the bottom of the tub. And I would be really creative and like, Yeah, I’m cool. toys like, I left pillows or floaties, or whatever, just to make me comfortable. So I wasn’t banging against the sides of the tub or hurting myself on the tub?

Of course, insurance? To be able to bathe safely and comfortably was a luxury.

My power chair I got when I was about eight years old. Me being able to be independent and move on my own was a luxury, according to the insurance company. So luckily, I think part of it was covered.

They just had to find ways to provide to get what I needed. And I’m really grateful that I had parents that did that.

TR in Conversation with Adriana :
Is that still, the situation with insurance with they treat those things like, luxury?

Adriana:
there are places still in the United States where people have to still fight for it. And yes, they still consider a luxury. But I’m lucky to be in the state of Massachusetts, and have the benefits and have not had to struggle as much as an adult in a different state to get the equipment that I need, but there are people in this country that that still have to fight, but still get subpar equipment, simply because insurance won’t cover the actual equipment that would be more suitable for that person.

I just don’t understand how people can be okay with that. I don’t understand how people that work in the insurance companies can have policies that allow that to happen. These are human beings and to treat human beings in that way, I just don’t understand.

— Music begins, a funky electronic dance track with lots of digital processing sounds and a funky groove.

TR:

The more you know how much it benefit’s a person, the more difficult it is to accept that it happens.

Adriana:

when I was older, let’s say my mid 20s was the first time that I had technology that I was able to turn on the lights to change channel on the TV, to open my door to my apartment. That was huge.

For the average person, it just sounds so basic. And these things excited me and I was so lucky. And I was in my mid-20s. And that was the first time I was able to do any of that by myself.

TR:

It doesn’t sound basic to me.
Adriana and I met as a result of inaccessibility.
It was December 2020 and I was trying to make sense of the social audio app Club House.
I accidentally hit a button that started up a room.
Honestly I freaked out, I had no idea who was going to join.
While searching how to quickly close the room someone popped in.
Shout out to Daniel from Singapore. We got to talking and then Adriana came into the room.

Adriana:
I joined clubhouse December of 2020, when everyone was locked down.

Initially, I was just checking out all the tech rooms and getting a feel for what was on there.
TR:

December 2020 was still considered early in Club House time.
There were a fair number of people using the app even though officially it was in Beta.
There was a lot of everything, good conversations to scammers, and definitely inaccessibility.

While in a room with some discussion taking place about disability Adriana didn’t like what she was hearing.

Adriana:

Special needs, and differently abled and Handi capable and all those god awful euphemisms instead of the actual word disability. And we’re like, Okay, this has to stop. Let’s do a room about disability and about language. And that’s how it started.

TR:

That room led to the creation of a club.

Adriana:
I was trying to come up with something clever, for a club name.

I read, 15% of the world’s population has a disability. And I was like, Oh, my God, we’re going to call it the 15. Then it sounds really exclusive. And cool, it’s Wow. And people will be like, Oh, what is this 15%, right, like, I want to be part of the 15.

TR:

There were some really great conversations throughout the rooms, from those hosted by the club to those from other members.

We as a club along with some cool allies (shout out to Glenn with two n’s) played a big role in advocating for improved access to that app,
making certain to voice concerns from the perspective of all users with disabilities.
Literally, all we wanted was to be included in the conversation.

Music ends.
TR:

Hey y’all, I’m cutting into the flow of the episode.
It’s time to announce the winner of the
February Socially ReidSponsible Instagram Giveaway.

Last time,
I told y’all about Annie.
A friend of the family who wanted to come on board and
help manage the Reid My Mind Radio Facebook and Instagram pages.
Last time Annie was under the weather…
while I knew the sun would come out…
I was hoping to get her on the podcast and ask…
Annie are you ok? Are you ok. Are you ok Annie!

Ok, I’ll stop before Annie decides to get her gun…

The winner of the February Reid My Mind Radio Instagram giveaway is…

Congratulations @Malic_acid,
Enjoy your very own Reid My Mind Radio
coffee or tea mug.

Now back to the episode…

Music ends with a bouncing base…

TR in Conversation with Adriana :

What was your first experience with having to advocate for yourself?

Adriana:
I liked pushing boundaries. But I was also very shy. Growing up, my teachers didn’t even know I could speak because I was so shy.

I started opening up more when I was in middle school and high school.

It was freshman English, and I had to write a paper. I decided to write about how, as someone with a disability, who took all honors classes, I had a one to one aid to help me turn pages or write notes for me who didn’t understand English.

TR:

Adriana literally would have to spell out things she wanted the assistant to write.
Meanwhile, the teacher is moving on with the rest of the class.
Could you imagine how frustrating that would be for a 14 year old?

She decided to write about it.

Adriana:

I knew once the essay was handed in, and I would go down the halls, I knew all the teachers knew, I knew the administrators. did and they were all talking about and I think that was my first like, official. My self-advocating for myself.

TR in Conversation with Adriana :
What lessons did you take away from that?

Adriana:
It felt good, actually, to cause a ruckus.

It was really obvious that they underestimated me. Even though I was in honors courses. I think it was really clear that because I was shy, because I never really spoke loudly or did anything like that all of a sudden, I wrote this paper. They had an insight to what was really going on inside my mind and how I was really feeling about the situation.

TR:

After being assigned a new aide, she knew her words could make a difference.

In her senior year in high school, Adriana wanted to work on the year book.
She knew she could, everything was computerized at this point.
But she was told she couldn’t.

Adriana:

Because it’s on the third floor and the elevator doesn’t go there. After four years of being in high school, I had no idea that there was even another floor that I had no access to.

Someone that I knew that was on the school paper, decided to interview me about it. A year or so later, they fix that.

TR:
Years later, Adriana found herself working as the editor of a newsletter at the Massachusetts rehabilitation commission.

Adriana:
it was called the consumers voice. Up until when I took it over, it was mostly just a regurgitation of what was on the DOJ website and not really the voice of the people.

I said, we’re changing that.

Music begins –
They allowed me to assemble a group of individuals who were involved or who were consumers of Voc Rehab. And people were also allowed to submit their own stories if they wanted to share an experience, both negative or positive.

TR:
At least that was what she thought.
It wasn’t until one consumer sent in a not so nice letter about their experience that tested the policy.
It landed her on a call with the Executive Office of Health and Human Services defending the consumer.

Adriana:

I said, Excuse me, but this is called the consumers voice. It is a factual story. No one is being called out by name in this story.

We went back and forth a little bit, and it got published.

TR in Conversation with Adriana :
Why was the idea of having the voice of the consumer being heard? Why was that so important to you?

Adriana:
It would be an injustice, if it was called the consumers voice and not having no voice of those people in that publication. It was wrong. It was so wrong on so many levels when you didn’t actually broadcast those voices and those stories and so it was really important to me to be true to what the name stood for.

TR:

In her job at a Day Rehab Center in charge of coordinating wheel chair evaluations, She found herself often advocating on behalf of others.
Sometimes that just means informing people of the process and their rights.

Adriana:
So most people don’t know this. But when you’re wheelchair shopping, it is your right, to test drive multiple chairs, it’s just like buying a car.
You spend most of your time in this thing. And it needs to be right for you.

TR:

Advocating on behalf of another person can be tricky.
Especially when you sometimes share medical professionals.
Like the time an OT didn’t provide a consumer with the chance to test multiple chairs.

Adriana:

So I knew this person, both professionally as well as someone who had helped me in the past to get equipment. And so I called her and said, hey, you know, I really think that he should buy this other kind of chair. I think he would benefit from it.

And she says,

— Music ends.

Well, you know, I didn’t think He needed to try anything, because he has a cognitive disability. And I was thinking at that moment, God, you are so lucky that his mother did not just hear you say that. And you’re also so lucky that I could not reach through this phone and rattle you.

TR:

I’m a big fan of this part of Adriana’s personality!
But fortunately for all involved, she has a really good head on her shoulders.

Adriana:

We spoke for a while and convinced her that we should have another wheel chair eval. We did it at the clinic not on site.

TR:

Mind you, this wasn’t in an official capacity. She took off to attend the eval in order to make sure this person received the appropriate service.

Adriana:

Prior to using this chair, he would crash into things all the time.

In this chair, he drove like a pro. It was also a standing chair. So he was able to stand and read, his mom was in tears. And it was just the most amazing and I was so happy that he was able to get what he actually needed and what best suited him. And then the OT came over after and apologized to me afterwards.

— A bit of silence…

“I’ve always been that type of person where I want to try to figure out how to make things better. How to make things easier for other people, not just myself.” – Adriana

TR in Conversation with Adriana :
Let’s go to another form of your advocacy. It’s what I think is sort of your natural interest in technology, combined with your empathy for others. I see all of that combined to make the beginning of Puffin innovations.

Adriana:

I’ve always been the type of person to have ideas and want to improve upon existing tech. And right after I graduated college I was sending out two different kinds of resumes. One was the typical resume that you would send to a company. And then I had a resume called assistive tech resume. And I would list all the things that I was experienced in using and New England. And I would apply to all these companies that I had used their equipment and I looked up to and it was a dream of mine, to work for a company.

TR:

Adriana had no entrepreneurial ambitions.
She just wanted to work for an Assistive Technology company that was serving people with disabilities.
That was until she receive word about an event.
]

Adriana:

MIT was looking for people living with disabilities, who had an idea, a solution to a problem that they themselves are experiencing. I was like, oh my god, this is like a dream come true. I get to go to a hackathon. At that point, I had never been.

I was just on cloud nine because I was like, oh my god, I have this opportunity to go to MIT, hang out with all these geeky people and geek out together and just be around all day. So I submitted my solution, it didn’t have a name, but it was the Puffin.

TR:

She along with about 15 other applicants were selected to participate in the hackathon.

Prior to the event, a dinner was held to give the co designers, that is the MIT coders and those with the ideas a chance to meet and connect with one another.

Adriana:

It’s kind of like speed dating.

The students will go around and meet each of the designers, and find more out about what it is that you want to do. This group of students came to me and they never left.

Literally, they had laptops, we were looking at parts, like we were already figuring out what we needed to make this happen.

TR:

Each team had an opportunity to request parts and technology prior to the hackathon.

Adriana:

Luckily, there was this person who he is now a puffin advisor, he had this big chest of parts. And if it weren’t for him, we wouldn’t have been able to build it at all. because we didn’t get any of the parts that we had ordered.

The students were amazing, because they really listened to what I had to say. I think that’s what made our team so successful. We were willing, and able to take each other things, and put that together, and put it in a way that works. We never dismissed anyone’s idea or anything.

We ended up making a working version, I think that’s why we won first place.

We got so much press. We were even in the New York Times, which was amazing.

TR:

Already motivated to get this product out to others who wanted more independence,
Adriana began receiving emails from people around the world asking that very question.
She was thinking about patents and funding while the student’s went on to complete their course work.

Adriana:

A good friend of mine who happened to be writing her thesis. She was getting an MBA back in 2016. And she was writing a thesis on hackathons.

She said, you had a successful hackathon, so I want to interview you.
When we were done, she was like, Well, what’s stopping you from doing that from making it into a real thing.

That was really her and I taking the time to just look up applications, learn what was out there and then apply to all these funding opportunities.

TR:

The idea that began after receiving an email in 2015 started to look more like it was turning into a real business.

Adriana:

It just all fell into place in 2017. And we got a $200,000 grant from the VA. It was April Fool’s Day. I kept looking at the email. I’m just like, This is real, right?
It was just surreal, like the most surreal experience, because we’ve never done anything like this before.

It really worked out because then we got into mass challenge. And that really propelled us forward because we didn’t have space, we didn’t have anywhere to go to work on this.

TR:
The Mass Challenge is a business accelerator program in Massachusetts.
In addition to funding and networking opportunities, they provide access to production space and other resources including equipment and people.

Adriana:

The people that would walk in and out of there were just people in the high tech industry that you would never otherwise ever meet in your life. And it was just an amazing experience. We also, as a result, something that happens here in Boston called inbound, that HubSpot runs. And we happen to have been part of that challenge. We got free tickets to HubSpot, HubSpot, or to endow and that year Michelle Obama was the keynote speaker. We got to go and it was just the most amazing thing ever.

TR:

Just when things are going really well, (Pandemic! )Covid 19.
Unlike other tech companies that were able to thrive during the pandemic, Puffin is a little different.

Adriana:
It’s a physical product.

* testing this here *
Our device is actually a mouth operated wireless input device. It’s just a fancy way of saying it acts as a mouse. So for people like myself, who can’t use their hands, they could pair our device with any Bluetooth enabled devices, so like your computer, or your cell phone, or your tablet, and then have full access to that device.

I know several people who don’t even have mobile devices, especially back when I started. That’s because they physically can’t interact with the touchscreen. That is why this was so important.

We also have an app that goes with the product, but it interacts with the device.

It’s really a hard thing to get parts that are not from overseas. And that’s where a lot of our components are coming from. We were down for a good supply chain. But now we’re ramping back up again.

TR:

Helping to build up some of that momentum is winning the ServiceNow digital workforce challenge along with acceptance into the Verizon for good Accelerator program.
Adriana:

Which is super exciting, because you get to work with these tech experts, from Verizon.

A big part of our device is the portability, the connectivity of it, wireless. And so having this opportunity to work with a communication giant, like Verizon, and leader in wireless technology, which then we will be able to incorporate in our device is going to be pretty amazing and really bring it to the next level.

TR:

Adriana says Similar products on the market haven’t seem much in the way of innovation because there’s little competition.

Adriana:

they have no reason to actually change it. So we’re changing it!

TR:

By incorporating artificial intelligence or machine learning.

Adriana:

I wanted this device to recognize, hey, this person is having a little more difficulty in doing this or that, or is struggling with moving in certain ways. So let me adjust the sensitivity, or let me adjust the pressure that is needed to go in this direction, but not in this direction.

TR:

By the end of the program with Verizon,
Adriana would like Puffin to have a product ready for sale in a beta phase in order to generate user feedback.

By the way, the name Puffin is like a shout out to the bird of the same name.
The devices mouth piece resembled the bird’s beak.
That beak you can say, is a form of assistive technology.
It enables them to carry food to their baby back at the nest.

Doing her thing with disability, is what separates Puffin from other solutions.
Adriana not only understands the value for herself, but seems just as excited for what that access brings to others.

Adriana:

I don’t know what I do Without accessing my cell phone. I can control everything with my phone, now. I can control the TV, I can control the lights with my phone, I can do my banking, I can do my shopping, I can read a book, right? I can, whatever, make phone calls, etc. You can literally do everything with a mobile device. So for people with disabilities, if you have access to your mobile device, you literally have access to the world. And that’s what’s really important to us. It’s giving people that opportunity to have access to things that they otherwise would not have access to.

TR in Conversation with Adriana:
Ok, How do I say this? Because of all the things that you do, your willingness to share, and help others the way you do your thing with disability. You Adriana Mallozzi are an official member of the Reid my Mind Radio family welcome to the family, Adriana.

Adriana:
Thank you! I’m honored to be a member.
TR in Conversation with Adriana:

So how can people learn more about the Puffin, about you? All of that.

Adriana:
So you can find more about Puffin at Puffininno.com So that’s Puffin like the bird and inno.com. Or @Puffininno on all social media platform. That is our handle. If you are on Club House come and join the 15% Club.

For me it’s just AdrianaMallozzi is my handle on on all social media platforms.

TR:
I started to give credit to the lack of access within the early version of the Club House app for my chance to meet and get to know Adriana.

It’s like giving credit to inaccessibility, poor treatment and service for the strong advocacy,
problem solving or management skills you’ll find among people with disabilities.

No! I’m not crediting the negative.

The energy we each give off works to bring people in and out of our lives.

Adriana and I were both on the Club House app, simultaneously trying to figure some of the same things out.
In fact, some of the same access issues that impact her were impacting me as a Voice Over user.
It wasn’t disability specific.
Perhaps that’s something I needed to hear.
I may have been seeking that without even knowing.

Maybe you listening here today needed to hear the words on Adriana’s shirt; “Not Impossible”. That’s really an energy that I personally want for anyone listening, the energy I want for myself.

Yes, we can dream big.
I just want to hear more from those achieving without having to compromise any part of themselves.

I’m tired of conversations about overcoming CP, blindness or disability in general.
I’m here when you want to talk about society overcoming it’s need to put up barriers,
it’s inaccessible websites and technology or
unwillingness to hire, give opportunities to or in any way include the disabled community.

I’m here for conversation with people like Adriana who want to talk about pursuing goals, making dope enabling technology.

I’m here when you want to talk about Doing Your Thing With Disability!

And you know where to find me right?
That’s wherever you get podcasts. If you’re on Facebook and Instagram, that’s @ReidMyMindRadio on Twitter @tsreid.
Or slide on over to ReidMyMind.com and you can find transcripts for our episodes.
Just make sure you remember, that’s R to the E I D!

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

Adriana:

Like his last name!

Audio: Reid My Mind Outro
Peace!

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