Reid My Mind

TR:

What’s up Reid My Mind Radio family.
Thanks for joining me this week.

In thinking about this episode, I decided to open the vault.

— Sound of a large vault door opening/ closing

— Music begins; a joyful fun mid tempo groove.

This podcast has been in existence since 2014 so yes, I’m referring to the archives as the vault because I think there’s value in what’s going on 9 years of episodes.

In 2015 when all of the episodes were really being produced for Gatewave Radio, I produced a couple of episodes on audio description. One was about Marvel’s Daredevil and what many believed was a bad move by Netflix in releasing the series without providing access for Blind viewers in the form of audio description.

We learned later that behind the scenes, even before the release of Daredevil, there were conversations taking place that helped lead to the success we enjoy today.

Less than ten years later, the future of AD doesn’t feel as bright as it did back then.

Who do we turn to? What do we do?

Sometimes it feels like “NO ONE WILL SAVE US”!
That’s up next, but first let me protect the archive and close the vault!

— Sound of vault closing as the kick drum of the intro music.

— Reid My Mind Theme Music

TR
Today’s conversation, ultimately is about advocacy.
And we know this isn’t new.
It feels like so much of what we as disabled people want;
access to employment, art & culture, transportation… you name it, requires a significant amount of advocacy.

This is Flipping the Script so we’re specifically talking about audio description,
but personally I feel there’s lessons that go beyond AD and apply to us all no matter the specific disability.

One form of advocacy is making space for the conversation.
That’s not a one time thing. It requires re-visiting and hopefully bringing in new people and new ideas.

Sometimes, we have to challenge the ideas that are put forth.

Like when in conversation with other Blind people on the subject of improving and increasing audio description, someone inevitably says something like;

TR in Conversation with Michael:
Why can’t audio description be more like captions?

What’s your response to that idea that oh the Deaf community has it all together captions are great, blind people need to learn from that to get audio description, to meet that same sort of level?

Michael:
Yes. That’s a great question. I think, first of all, it’s one oppressed group talking badly about another. I think an oppressed group is doing better than they are, which, unfortunately, is one of the hallmarks of oppression in general. So when jealous of someone else with a disability, then that’s part of the problem. Secondly, I don’t think captions are as commonplace as they should be. I really do try and advocate for both captions and audio description. And both of them just need advocacy throughout.

TR:
That’s Michael McNeely.

Michael:
I live in Toronto, Canada. I work as a lawyer for the Department of Justice. I’m also a filmmaker and a film critic. I provide film criticism for AMI TV, which is a new station in Canada.
I have about 6000 listeners for my film criticism. And I have also released a film today. It’s called advocacy Club.

TR in Conversation with Michael:
Tell me about it.

Michael:
It’s a documentary about my former work place which is called Canadian Helen Keller Center. It’s also located in Toronto. It’s a training center for people who are Deafblind. And it’s a residential center.

I was an advocacy instructor. And now I’m just a lawyer on consult.

I was helping clients with any issues that they had with regard to just standing up for themselves, or advocating.

It’s about why these people need to stand up for the issues that they keep having in their lives, and how we became closer together as a result.

TR:

According to the film’s web page, Michael is the first Deafblind person to direct a film. You can learn more about the film at AdvocacyClubFilm.com.

TR in Conversation with Michael:
Tell me a little bit about your relationship to disability. I don’t get too much into the diagnoses and all that, but whatever you want to share around your relationship with disability.

Michael:
I don’t even remember my diagnosis. I just remember that my geneticist is really excited about me, because she seems to have discovered a new disease. I told her to name it after me.

As far as I know, I’ve always been disabled my whole life. This is who I am. This is what you get. I’m actually fascinated by how other people perceive my disability.

So sometimes people think that being deafblind is the saddest thing in the world. I don’t think it’s the saddest thing in the world. There’s a lot of things that I do have privilege. And I’m happy to use my privilege for the common good.

TR:

If only more people thought about their privilege that way. That’s another story, but for now back to the question, are captions really the north star for access?

(Michael:)
So in Canada, we have movie theaters that are mostly run by Cineplex, I would say they have a monopoly set up that uses the CaptiView machine, which is a device that you can put into your cupholder and watch captions that way. Not all movies work with this.
So it really depends on institutional knowledge, as well as the movie has been made compatible with the technology. Unfortunately, for a lot of people with vision challenges, the CaptiView device, would not be accessible to them, since it’s quite small. So you have to be able to read the words in the caption of your machine to gain any benefit from it. Let’s talk about open captions.

TR:

Open captions don’t require any specialized technology, they’re on screen for anyone to see.

(Michael:)

Just like when you go to the gym, people can’t hear the TV. So you read the caption.

I think open captions will change the dialogue of captioning in general. Because you should be able to see a caption anytime you watch a movie.

TR:
That visibility normalizes access.
No longer is it hidden away and others will be able to report when captions aren’t working properly or even available.

Similar to many of our experiences with AD, captions aren’t always available. Sometimes it’s the technology, other times it’s a film that was delivered without them all together; in theater and at home.

TR in Conversation with Michael:
How about the streaming captions?
Michael:
Good question. So I’ve been buying a lot of different subscriptions to streaming services, and I cancel them.
If I remember, within a trial subscription period, but I try and do that just to see how good the caption is, and how reliable it is. I think Disney plus is pretty good at that Netflix is doing captioning very well. Amazon sometimes does not have things captioned. But I emailed the customer service. I’ve asked them to put captions in. Sometimes they listen, sometimes they haven’t. I try and make an argument that if I pay for a subscription service, than I’m paying for 100% accessibility.

TR:
I don’t think it’s a coincidence that Amazon’s subscription service is tied to Prime. Nor do I think it’s a coincidence that Michael has experienced a lack of captions on the platform.

For many disabled people however, cancelling a service like Hulu is much easier than cancelling their Prime account.

The latter makes purchasing all sorts of products accessible and extremely convenient. And I don’t doubt that they are fully aware of this.

We discussed access in movie theaters , at home on television and streaming… film festivals?

(Michael:)

Some are better, and some are worse. I’ve actually filed a human rights complaint against the film festival that was not attempting to be accessible.

You just want to know how much of the content is accessible. So if you can say 100% of the films have closed captioned in 30% have audio description now might be a good way to advertise before buying tickets for it.

One of the recommendations I’ve made was can film festivals to provide discounted passes for people with disabilities, not just because people with disabilities t to make less money, but also because the content is less accessible. So for example, if the Toronto International Film Festival has 300 movies, but only 200 of those movies are accessible , I suppose then should only be paying for those 200 movies instead of a full market price.

TR:

Advocating with our dollars as well as our voices. I support it!

I’m starting to think that ubiquitous captions aren’t actually a thing.
And even though captions which are indeed more widely available in comparison to audio description, similar to AD, it doesn’t guarantee quality.

Yes, quality and consistency isn’t now. But I know it’s not the captionist fault.

I have great respect for the Captionists.
I’ve seen them work in person, especially in the court system. They probably don’t have time to think about the content. They just have time to type in as fast as they can.

TR:

It’s not about blaming one party. Every role in the process plays a part. Executives set the standard by creating a climate of inclusion. Insisting that access is a part of the culture from the beginning. Making sure to include the community to determine what’s good access.
Choosing not to procure services solely by price and paying attention to quality.

As Michael said, we can use the power of our dollars by not supporting services offering poor quality. And sometimes that just means walking away altogether.

Michael:
I stopped watching reality TV, and I stopped watching news, because the captions wasn’t doing it for me.

Michael:

One of the things with watching live entertainment is that the captioning doesn’t keep up.
I was watching the news. And I was reading in the caption that a serial killer was on the loose and had killed a few people. When I looked at the TV I was interested in what the segment was about. It was a senior quilting festival so I thought maybe there was a serial killer loose at the seniors quilting festival.

I haven’t been able to watch the news since.

TR in Conversation with Michael:
Wow. Wow.So the captions were that bad, frequently?

Michael:
it’s better to watch a documentary. Because you know that there’s been Yes. post production done with it.

TR in Conversation with Michael:
What about automated captions?

Michael:
Oh my goodness. We use the automated captioning on Zoom. And I can tell you that it never gets it right. It is one of the most distracting things I could ever imagine. It comes up with the most ridiculous things that I’ve never said or would ever say.
For example, it said something about a whale’s anatomy. I wasn’t even talking about whales or anatomy.

TR:

One of the problems around automated captions is context. Even when it does properly transcribe what someone is saying, it doesn’t include the speakers name.

Michael:

So that can be hard sometimes. As a lawyer, I need to know who I’m speaking to sometimes.

as you probably noticed, I have an accent, I have a deaf accent. So sometimes the captioning doesn’t understand my accent. And it can be insulting. Because it reminds me that I have an accent, it reminds me that I have speech problems. So it’s one of those things that makes me feel like I’m taking a step backwards.

On another note, if you’re asking someone who’s deaf or hearing impaired to try and interpret the caption you’re asking them to make themselves tired before 10am.

if I play , let’s guess the word Thomas said, the game gets pretty old, there’s no prize. I don’t know if I win or not.

TR:

I feel similarly about watching content without AD.

I can try to follow along as best I can but I won’t know unless I’m in conversation with someone who had full access or research online. Not really the way I personally like to watch movies.

My choice? Well crafted culturally competent description written with love that centers the Blind community. And the best way to make that happen?

Michael:
Making the film at the beginning with an awareness of descriptive audio.

Let’s say I was going to make a slasher film. And what I did to ensure that my audience understands what’s happening, I’m probably going to put in some pauses, I’m going to put in some reflective periods, I’m going to not have that action happen all at once. It’s never going to be a bit longer movie, but it’s going to be more accessible. And it’s going to make the point that everyone can enjoy this kind of film. We don’t expect blind people to go see this slasher movie, but perhaps they can if it was accessible for them.

TR:

That’s audio description not only as access, but something we promote here quite often; seeing audio description as a creative tool rather than a mandated requirement.

Michael:
When you’re talking about compliance, it’s already too late to actually make much of a difference.

If you’re talking about compliance, it sounds like you’re leaving it to the last minute. it just comes off as not caring enough about people with disabilities. It’s just checking off something. It’s just doing something that a computer does, by itself. It’s not actually useful unless you go in and check it yourself.

TR:
See how the lines just got blurred?

This is true for both audio description and captions.

We talk about the opportunity to be more creative with AD and have seen a range of examples of that. Opportunities exist for captions as well. For example, color coded fonts to represent different people or emotion. However, some of the creative ideas like moving the captions off the bottom third break access.

Michael:
Because if you don’t know where the words are on the screen, then it’s not really helping anybody.

Imagination is unlimited. But one of the challenges is, how can you be creative and accessible in the center?

TR in Conversation with Michael:
I also heard about the lack of description of all things sound in captions, would you say there’s like a need for improvement there? So for example, when music plays how descriptive are they about the music that’s in the background? Do you get that at all?

Michael:
If there’s a fight scene, and the caption says birds chirping in the background, I’m like, who cares? Unless the bird is actually involved in this fight.

I’ve seen captions that when there’s a person walking on the street, it says street sounds. When the person driving, it says driving sounds. Obviously this person’s driving, and obviously that’s making sounds so give me some new information about that.

It’s that classic philosophical question. How do I describe blue to you as a person who is completely blind? How would you describe sound to me?
Not every person is the same.

TR in Conversation with Michael:
Right. Depending on what the film is, when he’s talking about describing blue, is the color blue important? Or is it more about the feeling?
Is this relating to the Blues as in sadness, or is this something else?

Michael:
100% I’ve just been learning about the color aspects of filmmaking. If you want someone to feel relaxed then they use lots of greens and blues. If you want someone to feel angry or violent you’d probably use red. That kind of thing.

TR in Conversation with Michael:
So, what would you like to see more from caption writers?

Michael:
Let the caption writers introduce themselves at the beginning and provide a contact.

I think that’s always something that made me feel better when I was at court , because I knew it was Joanne that was doing the captioning. And Mark , that was doing the captioning. And it was a human being.

TR:
It’s not surprising that those companies producing solid AD t to include their company name and both writer and narrator in the credits. One has to wonder why this isn’t standard practice for both AD and captions.

Michael:
I think it’s about accountability, providing the service.

I think we just get this tendency where people with disabilities are supposed to just accepts what’s given to them, just because we don’t have anything better.

We assume that everything we receive is okay, everything that we receive, gives us the equal playing field, it gives us better advantages than other people in life. That’s definitely Because there’s a lack of transparency and communication about the accommodations that have been delivered.

TR:
Michael even suggested a feedback form where folks could comment on the quality of the captions.

I talked about something similar for AD during one of our BCAD Chats.
That’s Blind Centered Audio Description Chats which you can find in this podcasts feed or head over to ReidMyMind.com.

Shout out to my fellow BCAD Chat partners Nefertiti Matos Olivares and Cheryl Green.

I have some pretty good ideas around how such a feedback form, well really a full website could function. Providing not only a means for feedback but community as well.
Anyone wanting to finance such a project, hit me up at ReidMyMindRadio@gmail.com.

Now that we heard from someone quite familiar with captions, do you think that’s the bar we as advocates for audio description should be striving to reach?

Think about that while I bring on our next guests

— Music begins, a bright mid-tempo beat!
Eric
Hi, my name is Eric Wickstrom. I am the director of audio description for international digital center. pronouns are he him?

Rhys
Hi, my name is Rhys Lloyd. I’m the studio head for Descriptive Video Works. My pronouns are he him.

TR:
When anyone asks me for examples of quality audio description tracks for networks and streaming platforms, IDC and DVW are the two I tell people to check out.

Are their others? Yes. But they don’t check off the boxes that these two do.
Let’s keep it real! IDC helped kick off the inclusion and hiring of Blind narrators. Their not the first, but to my knowledge they’ve done the most. If I’m wrong, please educate me – ReidMyMindRadio@gmail.com.

DVW also is doing the same and employs Blind QC.

I asked each of them to bring three to five issues that most threaten the future of AD and some thoughts as to what we can do about them.

That’s next in part two of this episode of Flipping the Script on Audio Description I’m calling;
“NO ONE WILL SAVE US”

Big shout out to my guest, Michael McNeely , for shedding a little light on captions.

Make sure you tune back in for part two of this conversation.
The best way to do that;
Follow or subscribe to Reid My Mind Radio wherever you get podcasts.
There’s transcripts and more over at ReidMyMind.com.
Remember, you got to spell it!
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
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Hide the transcript

Music begins
THOMAS: Welcome to the Blind-Centered Audio Description Chats. These are the edited recordings of the Blind-Centered Audio Description Live Chats!
CHERYL: The live is the most fun part! We get together, we start with a question, and then we invite up anybody from the audience who wants to come and chat with us, agree, disagree, shed light on something that we hadn’t thought about before, which is Nefertiti’s favorite. [electric whoosh]
NEFERTITI: I’m Nefertiti Matos Olivares, and I’m a bilingual professional voiceover artist who specializes in audio description narration! I’m also a fervent cultural access advocate and a community organizer.
CHERYL: I’m Cheryl Green, an access artist, audio describer and captioner.
THOMAS: And I’m Thomas Reid, host and producer Reid My Mind Radio, voice artist, audio description narrator, consultant, and advocate.
Hey, Nef, why don’t you tell people how they could join the live recording?
NEFERTITI: That’s really simple. Just follow us on social media to keep up with important details, such as dates, times, and what platform will be using. On Twitter, I’m @NefMatOli. Cheryl?
CHERYL: I’m @WhoAmIToStopIt.
THOMAS: I’m @TSRied, you know, R to the E I D.

EDITORS Note:
THOMAS: The following is the second half of a two part conversation from April 5, 2023.
We’re calling it, Becoming Critical. In part two, we speak with John Stark, a Blind film critic who reviews films both with and without AD, in order to highlight the need for audio description.
And now, let’s jump into this latest Blind Centered Audio Description Chat!

[smartphone selection beeps]
CHERYL: Recording now!

THOMAS: Tell me about your first experience with movies in general, not audio description, movies in general.
JOHN: I mean, I’ve been watching movies my entire life. I’ve always loved movies in sort of like an obsessive way. I remember as a little kid, I actually used to cut, back in the day when they used to put the ads in the papers and they had little posters of the movies, I used to actually cut those out. I was like five or six, and I collected them. [laughing] So, just like obsessed with movies! But I don’t know. I’ve always wanted to watch movies. I think Jurassic Park was kind of maybe the big turning point for me. I’ve never really wanted to make movies. I started reviewing as a critic. I used to live in a small town, and our small-town newspaper didn’t have a critic, so I actually convinced them to let me write for them in middle school. So, that was kind of cool. I got to write for a couple years until they ended up picking up a movie critic out of syndication and decided they didn’t want a, you know, 13-year-old writing reviews for them anymore. I guess they didn’t like the fact that I gave Power Rangers four stars.
But yeah, I used to be able to see, so I enjoyed a lot of films that way. And I eventually grew and started doing stuff online. And I’ve tried to bounce around on sites, trying to review wherever I can, eventually getting, you know, getting it all together to have my own site and post my own reviews and then my own YouTube channel. But I do have a degree in Cinema Studies; it’s what I went to school for. And then around 2017, I found out that I was losing my vision, and it went pretty fast. So, I kinda stopped for a little while ‘cause nobody told me right away about an audio description! And as soon as I found out about it, I dove like head first. And I was like, “Oh, what is this amazing thing?!”
THOMAS: How did you find out about it? How did you find out about AD?
JOHN: To be totally honest, when I went blind, when I started joining all these Facebook groups, at first, nobody was talking about it. I would try to talk about movies and television shows, like, “Hey, what do you guys watch?” And pretty much everybody was watching reruns, you know, of stuff that they were familiar with. But eventually one day, I don’t know, somebody just mentioned audio description. They were like, “Hey, do you know about this?” And I was like, “What?! Tell me how do I turn this on? Where is this amazing feature?!”
THOMAS: [chuckles]
JOHN: And I really, I mean, I knew it existed ‘cause I had worked in movie theaters, but I didn’t know that it existed in the, at least in the proliferation and like, how to turn it on and that it was on all these apps, and I could have it on my phone, and I could have it on my Roku. I just, I just didn’t know. And as soon as I did, I haven’t stopped.
THOMAS: So, what was your—
JOHN: I felt like I had to catch up on everything.
THOMAS: Yeah.
JOHN: So, I feel like I’ve just been watching non-stop.
THOMAS: Do you remember your first experience with AD?
JOHN: Oh. I don’t. I wanna say it might’ve been when, like, a new season of Stranger Things was coming out.
THOMAS: Oh, really?
JOHN: Probably like, around when Season Three of Stranger Things, I think, hit.
THOMAS: Ah!
JOHN: ‘Cause I think I went back ‘cause I didn’t get a chance to watch Season Two. And I remember I had to watch Season Two before Season Three. That’s about the time that I remember hearing about it.
THOMAS: Okay.
JOHN: Yeah, and that’s probably the best memory I have because Stranger Things is such a visual show that I was so happy to have that audio description and feel like I, you know, I knew this world, and I knew the crazy special effects and everything that were going on, and it was great. And, yeah, I just, I would get disappointed after that every time a film didn’t have audio description. And when new things came out, and I couldn’t understand them, I was like, “Why? How do I tell somebody that this is unacceptable? You know, why doesn’t this film have audio description?” So, I joined the community, this audio description community, and just started listening, paying attention and calling and arguing with streaming services to try to get audio description on titles and fighting with them. And I just wanted to sort of help those out there who don’t know about audio description to try to help other blind people find titles that work for them, to talk about titles that don’t have audio description. And is it sort of watchable if you have to watch it? Is it not watchable? Like, what level of it is it, and why is it that way? Why can’t we follow this?
THOMAS: With the audio description specifically, how long did it take you to sort of get your own determination of what is good audio description and what is bad audio description?
JOHN: A lot of different things for a lot of different companies. And ‘cause everybody kinda does things differently.
THOMAS: Mmhmm.
JOHN: And for me watching, you have to watch every genre, too, because it’s different for genres. I think there’s, there are different expectations with everything. I notice with a lot of TV sitcoms that really just kind of nobody stops talking, the audio description is very light. Whereas there are other programs where almost nobody’s talking, so the audio description narration fills in a lot. I mean, you get everything. You get costumes, you get hair, you get people’s facial reactions because there’s nothing there to, you know, to talk over, to accidentally. I understand you don’t trample the dialogue. It’s comparing them. It’s seeing who does it differently. It’s hearing conversations.
I remember when I started reviewing, I went pretty hard on how I felt about Chip N’ Dale Rescue Rangers and that audio description because I thought it was pointless. It didn’t do what it was supposed to do, which is bridge the gap for blind and visually impaired users because it didn’t include basically every single cameo that they had in the film. There’s YouTube videos going over like 300+ cameos in that film of other animated characters. And it was like the audio description went out of its way, even on characters where it did reference, it described what they looked like instead of saying what characters they were. So, you had to guess based on the description. And meanwhile, if I was able to see, I would’ve instantly recognized all these characters as all the sighted people did! So, come to find out that was actually Disney requested that. So, I don’t understand why Disney requested that. I don’t know why they wanted us to have half the experience, but that was definitely a moment for me where I was learning from the community as I was reviewing.
THOMAS: Mm.
JOHN: And I try to pay attention. I try to come to meetings like this and learn as much as I can so that that way, I know what it is I’m criticizing, like, what the parameters are, what’s possible for audio description, and so that I’m not demanding something that is impossible or cannot be done. And I think I’m doing that? But I don’t really know.
THOMAS: It takes a while for folks to get used to listening to films with audio description and get their own bearings on what is good and what is bad. Take us through your process in critiquing a film. How do you do that with the AD? ‘Cause you do with and without AD, is that correct?
JOHN: Yeah, I do with and without. ‘Cause I tried to call out a film. I actually had that really interesting experience where I worked with a producer—we can talk about that later—of an Oscar-nominated short where her film didn’t have AD, and she saw my review. And then we ended up getting the film AD.
THOMAS: Yeah.
JOHN: So, that was a cool experience for me. But in general, first of all, the question is, can I understand it?
THOMAS: Yeah.
JOHN: Did the audio description, was I lost? Could I not follow the film? Most of the time, the answer to that question is yes. Most of the time I am able to follow. It gets a little bit trickier the more you get into like, action, sci-fi, and horror, because there’s a lot of things happening. And I think especially with horror films I’ve seen, that’s probably where the audio description gets the most tricky because I’ve seen audio description that leans away from horror and gore and doesn’t describe it. Which sort of defeats the purpose of the genre.
THOMAS: [chuckles]
JOHN: But then again, I go back to the thing about contracts, and I don’t know whether or not the studio is saying, “Please don’t describe this.” So, and sometimes things are described sort of generically, and you don’t really get the scare of the scene. It’s really hard to be scared anyway. I mean, I used to be kind of a baby about horror movies. Now I find myself watching anything because it’s like, well, if I don’t, if I can’t see it, good luck scaring me. And so far, that’s proven to be largely true. I can be grossed out a little bit, definitely. But jump scares and everything have a completely [laughing] different effect when you can’t see the thing that’s lunging out at you on screen, and it’s just like sound or something. Just, I don’t know, for some reason it’s not as scary. But yeah, it’s stuff like that. Is it effective for the genre? Did I understand? Did a character die, and they forgot to tell me about it? [laughing] You know, did I miss something?
THOMAS: Hmm.
JOHN: Was somebody referred to as the wrong thing? When I get to review a film that I did see visually, and then now I’m watching it again as a blind person, that’s when it gets really interesting. ‘Cause then I’m like, okay, I actually got to see this, and now I’m blind. What’s my experience like now?
THOMAS: Yeah.
JOHN: Those are interesting comparisons for me because I do know what I’m missing. With audio description, I have to guess what I’m missing. And sometimes I don’t even know. Like recently with Tetris, there’s a scene that’s like an 8-bit car chase scene that just is kind of described as a regular car chase scene. But when I heard another critic describe it, it sounds like I totally did not get that scene described to me the way that at least they’re describing it in their review. So, that happens a lot. I don’t actually know what I’m missing, so it’s hard sometimes to grade it. And then I come back around. I’m like, I, you know, I don’t know. Did I miss something that I didn’t know that I missed?! So, it’s very tricky. And I hope to continue to get better at it and continue to pick up and just further the audio description discussion, so.
THOMAS: So, how do you do that on a film that doesn’t have AD?
JOHN: By pointing out why the film doesn’t work and why it’s unintelligible and why someone would need audio description. Sometimes it’s led to somebody pointing out to me that there is audio description available. It’s just nobody’s using it.
THOMAS: Mm.
JOHN: I know William Michael Redman reached out to me because I reviewed Crimes of the Future, which I rented when iTunes had it 99 cents on sale. And then later on, Hulu had, it still didn’t have audio description! So, I saw two different versions of it. And he’s like, “I recorded audio description for this. I don’t know why nobody’s using it!”
THOMAS: Yeah.
JOHN: But it’s a body horror film, and there’s almost no, there’s almost no dialogue in it. So, it’s pointless, and it’s impossible to watch. It’s a waste of time for blind people. But I did sit through the whole thing to let people know, like, “Yeah, I sat through this, and this is what you’re gonna get. You’re gonna get about three scenes of dialogue and just kind of some sound effects.” Skinamarink was an experience. I mean, that film by law should be required [laughs] to have audio— It’s impossible. It has almost no spoken words in the entire film. It’s all just sounds. So, it’s a very weird experience, and there’s no score. [laughing] It’s a very weird experience.
THOMAS: Oh, my gosh.
JOHN: And so, a lotta times I stopped. At first, I was using, I was using the lack of audio description in my grading, which I didn’t feel like actually represented the film. So, I just started grading those films as being unwatchable.
THOMAS: Yeah.
JOHN: Like, it doesn’t get a letter grade anymore. It just, I just say it’s unwatchable, and I move on.
THOMAS: Oh, I think that’s an F. That’s should be an F. [laughs]
JOHN: I mean, basically it equates to an F. But I also am acknowledging that this might be the best film ever made.
THOMAS: Yeah.
JOHN: I just have no idea because this film is not accessible to me.
THOMAS: Wow. And so, talk about describe watching a film like that with no AD. I’m like, “Dude, what are you doing?! [laughs] Why are you, why are you, why are you doing that to yourself? Why are you?” You know. So, why? Why are you doing that to yourself?
JOHN: To show people. I actually, on my YouTube channel, I filmed myself watching RRR, which Netflix had decided to offer only with English dubbing and no audio description.
THOMAS: Hmm.
JOHN: And so, I basically filmed myself watching it and then uploaded it, just talking about like, can I understand anything what’s going on? And I would talk about, like, as things are happening, I’m like, “This is what I think is happening. I’ve got no idea because there’s no audio description here. Oh, this song sounds really cool. I don’t know what they’re doing on screen, but…” you know, stuff like that. If somebody’s not doing it and pointing it out, then everybody will think that everything’s okay, that we’re just okay, that because nobody’s complaining, nobody’s saying anything. You know, these streaming services, they hire customer service agents to just kind of placate us and move along. I mean, I’ve complained to Paramount+ about some things. I complained about Showtime audio description on their service when it launched, and it still doesn’t have audio description for known, for titles that have audio description. And it’s owned by the same parent company.
THOMAS: Mmhmm.
JOHN: So, I’m trying to bring attention and focus in whatever way I possibly can. And if it’s me suffering through things to be able to point out like, “Yes, I tried it your way. Your way doesn’t work, you know. You have to do it this way. You have to get the audio description because I’m paying the same amount as everybody else for all my subscriptions. But I’m actually, like, a bunch of these titles are not accessible to me. They’re completely unintelligible without audio description.” So, I’m fighting complacency within the streaming service, so I will watch anything if I think it might stir the pot. But like I said, I don’t know. I don’t have a huge following. Everything nowadays is based on your social just footprint. And if I had a million followers, I feel like there would be audio description on Showtime! Because there would be a series of videos of me calling out Paramount+ until they actually did it, so.
THOMAS: Are you on Twitter?
JOHN: I am on Twitter. I’m MacTheMovieGuy, yeah. I don’t use Twitter as much as I do YouTube, but I have the ability to tweet. It’s, I feel like people are leaving Twitter, so I don’t really know what to do [laughing] with Twitter!
THOMAS: No, but the reason I ask about Twitter is because I think, like, I’ve personally had some really good experiences with HBO, Amazon, I think Paramount also, when you get at them, right there on Twitter, right in public. Because you could just @ them. You could, if I were you, I would be @-ing them every single video, you know. But even when you just have your customer request stuff, like, put it out there in the open for the world to see. It doesn’t mean that the world is going to see that, but it means that the world can see that.
JOHN: Oh, I’ve done that a couple of times.
THOMAS: Okay.
JOHN: I just don’t do it all the time. Because I, again, I don’t know how effective Twitter is anymore, and I was just worried. I just don’t know if anybody is—
THOMAS: Yeah, I don’t know either. But I would still put it out there.
JOHN: —listening on Twitter anymore.
THOMAS: I would still put it out there.
JOHN: Yeah, I will.
THOMAS: Yeah, yeah. Especially all your videos because, What’s interesting is that there are people doing the same work, right, but doing it differently, whether that be, you know, making those phone calls, whether that be advocating the governmental environment, you know, the whole CVAA, all of that type of thing. But to show your experience is pretty good. People write about their experiences, all of that. But yeah, that’s an interesting, it’s another level, and that’s fantastic. I like that.
How do you choose the movies that you decide to film yourself watching?
JOHN: Every once in a while, it’s just totally random, but I usually try to review new titles. I need to allow myself the grace to not review literally every new title because I, last year I reviewed, I reviewed 295 titles that were released in 2022.
THOMAS: Huh.
JOHN: And there were some titles I wasn’t even interested in, and they were poorly made, and there were these like, crappy things that are thrown together that had audio description, you know. [laughs] And so, I reviewed them. I was like, “Oh, well, you put audio description on this film with nobody in the cast I’ve ever heard of. I’ll watch your random freebie rom-com. Sure!”
THOMAS: [chuckles]
JOHN: So, and a lot of them ended up being predictably bad. So, I’m trying not to review these films that I don’t think anybody cares about.
THOMAS: Hmm.
JOHN: But yeah, I wanna review things as soon as they at least hit streaming and they’re accessible to everybody. I could go to theaters. As somebody who worked for four major movie theater chains when I could see, I know that they do not train those managers very well in actually figuring out how to fix AD. And the whole thing about paying for the Uber to go out there to find out the audio description doesn’t work. I just know too many times when I was working in movie theaters, our audio description wasn’t working, and I never knew any of the projectionists who knew anything to do other than turn it off and turn it back on, unplug it and plug back it in!
THOMAS: Yeah.
JOHN: So, it’s gotta be incredibly frustrating. I had no idea how frustrating it was until I’m now on the other side of it. But nobody ever trained us. So, I see people all the time posting how frustrating it is to go to theaters. And it’s like, I can’t. I just don’t have that kind of time and money in my life to spend that money to Uber out to a theater to find out that the movie doesn’t even have audio description, so I can’t even review it.
THOMAS: Again, that’s an example of, you know, yeah, choose your fight, right? Because that literally, I know for me, it took about three years for this one theater that my wife and I would constantly go to, to actually start to get it right. It took about three years. Now, we were always comped, [laughs] you know? But still, it took about three years. So, it’s, yeah, it’s crazy. Tell me about—
JOHN: You always get passes, yeah.
THOMAS: Yeah, yeah, yeah. We had lots of passes.
JOHN: Yeah.
NEFERTITI: And may I just say, passes are great except that when you came back, I’m sure it still wasn’t fixed. So, what good, really, are those passes?
JOHN: Well, the theater’s not giving you passes for the Uber either.
NEFERTITI: Right. Right.
JOHN: So, if you’re having transportation issues, it doesn’t compensate you for that.
NEFERTITI: Or gas money, you know?
JOHN: Exactly. Whatever it is.
NEFERTITI: Yeah. I’ve never been a fan of like, “Oh, we got comp tickets!” What good are they, really, ultimately?
THOMAS: Well, it could be good. It could be good. For me, it was good. [chuckles] Family of four? Yeah, I was able to go with just my wife. We’ll get a, they’ll end up giving us four passes, and then we go to watch something with the kids, you know. But it was, it was also, part of that was—and I’m not saying this works for everybody—but it’s just like again, you choose your battles, but that takes them seeing you there in a relationship because we started to talk to the manager. And again, this is just one of those things where once they know you, once it’s not a, “Oh, there goes that, here comes somebody,” you know. But now they know you. You know what I mean? They start to make a change. I’m not saying that everybody needs to do that, but that is one way is to go. When you go in there, ask for a manager, introduce yourself to that person. Because they’re probably gonna be there the next time. And so, that’s who you should be talking to. You bypass the little, you know, the college, the high school kid who’s working behind the counter. Bypass that guy. [laughs]
NEFERTITI: You build the relationship. And that is something that I am a fan of.
THOMAS: Yes. Yes.
NEFERTITI: I do like relationship building, and like, look, put this, put this human being who this lack of access is affecting, like, this is a real-world example. This isn’t some abstract thing. So, I definitely like that part. Yeah.
THOMAS: I wanna hear about, John, your experience where calling out a film ended up doing something happened there. Tell us about that.
JOHN: Yeah. I reviewed, ‘cause definitely, when I’m saying I review things that I think people are interested in, I review, I try to review as many Oscar nominees as possible, and that included the shorts when they were available on streaming. So, when My Year of Dicks was available on Hulu, I reviewed it. It did not have audio description, predictably, because Hulu doesn’t, [chuckles] you know, Hulu be Hulu. And so, I had to do my review based on how I was able to understand it based on the lack of accessibility. And it wasn’t great. It wasn’t completely unintelligible ‘cause it has dialogue, but there was a lot in there that just didn’t make sense and didn’t come together.
And I actually had the writer of the film reach out to me on Instagram, and she immediately tried to fix it for me. They hadn’t even, they didn’t even really think about audio description or know what it was. And suddenly, I had educated them. And she actually sat down at her computer and tried to do what I would call homegrown audio description, just at a laptop, which kind of sounded a little bit like director’s commentary, [laughs] almost.
THOMAS: Yeah.
JOHN: But because she didn’t know the ins and outs of audio description. So, it was essentially what she gave me, which wasn’t even complete, it was just like the first 10 minutes of the thing, talked over dialogue. And so, I explained to her, I was like, “This isn’t really audio description. This is why. Plus, I can’t really use this because no one else can use this. This is just in a Dropbox you sent to me. So, it’s not, I mean, I appreciate it. You’re going out of your way to do this, but it’s not like I could rereview the film based on [laughs] homegrown audio description you put in a Dropbox.”
THOMAS: Yeah.
JOHN: And so, she was really interested in trying to fix the problem permanently. And I was posting about this at the same time in that Facebook audio description group. And I had a producer on there that reached out to me and said, “Hey, can you connect me with the person that you’ve been talking to from My Year of Dicks? We would like to provide the audio description for that film free of charge.” Which I’m assuming they were doing so because they were a company I hadn’t really heard of, and they figured, hey, it’s an Oscar-nominated short. Maybe more people will know who we are, and it’s great publicity for us, so—
THOMAS: Can you name the company? What company was it?
JOHN: Oh! Off the top of my head? No, I can’t.
THOMAS: Okay.
JOHN: And I would have to go look up the producer’s name because I did not remember. I haven’t talked to her since she provided audio description.
THOMAS: Okay.
JOHN: But it’s on Vimeo, and it was uploaded onto Vimeo. There’s a, it’s, you didn’t have to turn the audio description on. It’s just a static, it’s like open audio description is what they ended up creating and uploading for the film. And they managed to get that out a little bit before the Oscars. They sent it to me. I shared it with the group. I’ve tried to share it out with other people, and I did do a second-look YouTube review of the film with audio description where I did give it a higher grade the second time around because it had audio description. I predictably was missing some things that the audio description made more clear for me. So, it was, yeah, all in all, it was, it was great. And it was nice to hear something from a content creator that said, “Hey, we should, we need to fix this. You know, how do we fix this? How do we make our title accessible?”
For something as small as an Oscar-nominated short, because honestly, I mean, I know film and shorts do not, they have a half-life of about five seconds. Once the Oscars are passed, nobody looks these things up again. Nobody’s gonna go back and try to find the Oscar-nominated short from 2004 that didn’t win the Oscar. They’re used, often, for those directors to get feature gigs, to get hired by bigger companies, generally, is where those directors come from. I don’t know that anybody is, in a couple years, is even gonna look up My Year of Dicks, but hopefully, until there’s another Oscars and it gets moved out of the limelight, people will go over to Vimeo and watch the audio description track, so.
THOMAS: But do you think something came of that interaction with the writer? ‘Cause you said it was the writer. It wasn’t the director. It was the writer of the film, right? Correct?
JOHN: Oh, absolutely. Absolutely.
THOMAS: Okay.
JOHN: I think it’s somebody who now is aware.
THOMAS: Mmhmm.
JOHN: And I think she made her team aware.
THOMAS: Mmhmm.
JOHN: I don’t think, I don’t think this was a conversation that she had, like, just by herself, you know, without anybody else. I think she likely contacted, I don’t know, like, the producer, director, whatever of the team and said, “Hey, I wanna, I wanna do this. I wanna get audio description on our film. Can we allow this to happen?” ‘Cause somebody had to okay it being uploaded to Vimeo, so it wasn’t, you know, there wasn’t a copyright claim. So, yeah, I think a couple more people are aware. And if more people can be aware, you know, I mean, that’s what I did with just, I have 118 subscribers on YouTube, and I did that. So, if I have, you know, 118,000 someday, I don’t know who’s gonna see my YouTube video and who I’ll be able to reach. So, start small, and I’m just gonna keep doing this until I make effective change, so.
THOMAS: Why is this so important to you?
JOHN: Because film is. Because it’s what it—
THOMAS: Why?
JOHN: Because it’s, it’s everything that I do. I mean, I have, I…. I have, [chuckles], I’ve, everything I’ve done has been around movies. I’ve reviewed movies online on various websites. Even when I was a kid, I reviewed movies for a newspaper. I have been watching movies. I had a huge, massive VHS collection. I even did like the illegal thing where I dubbed movies that I rented so that I could try to increase my VHS collection back in the day. I have a massive DVD collection. I used to even play some of the games. There’s a whole bunch of games for people who love movies. There’s like Hollywood Stock Exchange existed for a long time. I used to play a game called Hollywood The Game where you kind of wrote a screenplay and produced like a fake version of your movie and released it into the box office to see how it did, stuff like that. Box office challenges, the stuff to predict box office. I’ve talked to people who run other websites or their movie websites. I worked for Movie Gallery while they still existed, and people still rented movies, actually, in a store. I was a store manager for them in addition to the fact that I worked for four different movie theater chains where I was also a theater manager, so. Then I went to film school!
THOMAS: So, John, let me ask you—
JOHN: I haven’t done anything else!
THOMAS: So, let me ask you the question a little differently then. Why should anybody else care?
JOHN: What do you mean by anybody else? Like, anybody but me?
THOMAS: Anybody. Yeah, I mean, you telling me why—
JOHN: It’s like anybody care about me or anybody care about film or audio description? Anybody else care about film?
THOMAS: Why should anybody else care about audio description? You’re telling me, because of you and your background—and I respect that. I get that—but, you know, a lot of people would be like, “Okay, that’s you. That’s your problem.”
JOHN: The weird thing is that I think a lot of people don’t know about it. I’ve had personal interactions with people where since then, I’ve told them about audio description and turned it on, and it’s like their mind is blown. Actually, I work in a school, and I had a student that came in who was also visually impaired. And I was like, “Dude, do you watch movies with audio description?” He was like, “No, what is that?” And I explained it to him. And I had him, I turned it on, on one of my apps that I just had. Like, I pulled up Netflix, just pulled up a movie and just played it. And he was like, “Wow, that’s really cool that you can actually follow the action.” It was like an action thing that I pulled up to get the most effect out of the audio description.
THOMAS: Mmhmm.
JOHN: Yeah, you can actually hear it. And I think if people realize what it is that they’re getting, that they’ll use it to watch those films that they consider unwatchable and the TV shows that they consider unwatchable. Because I saw so many conversations from people who believe that action movies and horror movies and sci-fi movies are unwatchable and they just, like, they won’t watch them anymore. They only watch things or listen to things that they’ve seen. They won’t watch anything new. But it’s like they want to. If you go blind right now, and you’re halfway through the Marvel Cinematic Universe, you know, you wanna keep watching the Marvel Cinematic Universe. But there’s a lot of visual stuff that happens in that. So, if nobody tells you about audio description, then maybe you just stop watch-, you stop doing the thing that you love. And I think blind people give up enough things when they transition that this, if there’s something here that can help you do the thing that you were already enjoying, that can help you to continue to watch the TV show you were already watching, why not, you know?
THOMAS: Mmhmm.
JOHN: I think, I think it’s just a matter of introducing people to it and getting them, and normalizing it. If you normalize it, then I think people will accept it. I know people who use audio description who aren’t even blind. I had a guy tell me that he uses audio description when he goes jogging so he can catch up [chuckling] on his TV series! You know, like, instead of listening to music or audio books, he jogs to Abbott Elementary with audio description!
THOMAS: Mmhmm.
JOHN: It’s like, okay, you do you.
NEFERTITI: I love that. I love that. Yeah.
JOHN: Yeah. I had another friend tell me he uses audio description because he likes to multi-task, and so he doesn’t have to pay attention to his TV. He can turn on the audio description, and it runs in the background, and he doesn’t actually have to look at the TV. He can catch up on whatever while doing other things. So, it’s interesting that sighted people I know use it too, so.
NEFERTITI: Mmhmm.
THOMAS: That exchange you had with the student, that would’ve been a fantastic video. That would be a really good video.
JOHN: I gotta ask the student if that’s okay.
THOMAS: No, yeah. I know. Yeah, yeah, yeah. But if that’s something you could, if you could show somebody else, another kid, a young person like that, an older person, somebody who hasn’t been exposed to it, capturing that, that could be pretty interesting. Not to say that what you’re doing is not because it is. I’m just saying I would just add that. But something to think about.
NEFERTITI: I think so, too. Yeah.
JOHN: I would say I almost had that opportunity in a weird way. And I have to very, I have to tread very lightly on this because I signed an NDA, but I think if I never say the company, I think I’ll be fine on this. But I would say that somebody caught me and offered me a contract to do just what you’re talking about. But I think it fell through. I was contacted to do essentially instructional videos because they saw me doing what I was doing, and they realized I was blind, and they wanted me to show how to use their product for other blind people. They thought a blind person doing the blind thing would be. Unfortunately, I think that ended up not happening. Which is unfortunate because I would’ve loved to do that. But I came really close to doing exactly what you’re saying, basically, and teaching people how to turn this stuff on and use it, so.
NEFERTITI: Yeah, I think examples like that are really impactful when other people come across like, wow, that person seemed really effected, you know, in a positive way. I think that can be hugely influential for those out there watching. But John, what would you say to people who, and I’ve heard from a number of folks interested in this conversation tonight because they’re interested in getting into this. So, my question is, I guess, a two-parter. One, do you think that there could be impact if the number of critics, blind critics specifically, critiquing audio description in particular, would that be helpful for raising awareness? Is that something you would like to see? And then how could they get started? What would you recommend? How do you recommend they begin?
JOHN: I would say absolutely. Actually, I’ve had this conversation with Alex Howard, who’s, he’s in that group. He’s doing The Dark Room podcast.
NEFERTITI: Mmhmm.
JOHN: And we talked about trying to figure out, we’re trying to figure out a way how to start essentially what is the equivalent of a critics guild, but a critics guild for either, you know, some kind of like disabled critics guild or blind and visually impaired, like, or maybe d/Deaf and blind, some kind of combination, so that that way it brings attention to all of that, so that we can all connect and be stronger together and show people how many of us there are. I think they think we’re some sort of weird minority, you know, like, I don’t know, albinoism or something. Just like, “Oh, I’ve never met anybody who’s like that before!” So, they, we need to provide this service.
NEFERTITI: Mmhmm.
JOHN: Like it’s just some weird unicorn thing, like, “Oh, there’s a blind person that watches TV?!”
NEFERTITI: [laughs] Yeah.
JOHN: I guess. I don’t know. So, yeah. I mean, if we’re all out there talking about it and posting about it and getting on the socials and, you know, if you wanna, if you wanna do a YouTube, do YouTube. If you wanna do a TikTok, do a TikTok. If you wanna do Instagrams, do Instagrams. There’s a website called Letterbox. You can post stuff there. I don’t do Letterbox because there’s only just so many social media [laughing] things I can possibly handle!
NEFERTITI: [laughs]
JOHN: But yeah, there are plenty of places to post and share your reviews and your content, and you just have to start somewhere. Start maybe with a film that you like. Don’t put yourself with the challenge of reviewing something you’ve never seen before. Pick something that you like, that you know you like, that has audio description, and convince people why you like that thing. And then start about, and then start there and explain why the audio description matters to you with that film, why it’s helped you. And then just grow from there and just keep it going and keep talking. And don’t let anybody tell you to stop talking. Because the more noise we make, the louder we are, the more audio description we’ll get, so.
NEFERTITI: [applauds] Yes. Yes. I’m clapping. I love this answer. As someone who is part of a collective, right, of professionals, we’re all professionals in our own right, and we come together and we’re doing and making audio description, creating audio description and spreading the word about it, and, you know, just maintaining this quality of excellence, commitment to the audio description we create. I’m a big believer in people coming together, and like you said, you know, collect our voices. The louder we are, the more we’ll be heard, the further the message. So, if people would like to get in touch with you, how can they do that? If they want to explore this idea with you and join, you know, whatever ends up coming of your collaboration with others?
JOHN: Oh. Well, like I said, I’m on Instagram. It’s @MacTheMovieGuy. I’m on Twitter @MacTheMovieGuy. I am on Facebook as John Stark. If you send me a request, and you let me know why, like, send me a message also on Messenger and say, “Hey, I’m in the audio description community,” then I’ll know you’re not like a weird spambot.
NEFERTITI: Mmhmm, mmhmm.
JOHN: So, don’t just send me a weird friend request out of nowhere! But I’ll accept it if it’s for audio description. And I mean, I’m on YouTube. YouTube.com/MacTheMovieGuy. My website is MacTheMovieGuy.com. Any one of those ways, just reach out if you wanna talk about audio description in movies or anything.
NEFERTITI: Excellent. So, you have a number, a number of ways of getting in touch with John so that you can add your voice to what I personally think, and I think we all agree, is a pretty critical thing that you’re doing.
JOHN: I think I’m here because right now, I’m a unicorn, and I, as awesome as it would be to continue to be recognized for what it is that I’m doing, I would much, you know, I would also be okay with being a horse. You know what I’m saying? Something that you see a lot more common.
NEFERTITI: Mmhmm.
JOHN: So, if there were more blind film critics that were talking about audio description, I don’t mind that. It’s there are a lot of people out there on the Internet talking about movies, and there need to be more of us that are blind and that are talking about the accessibility. So, I know why I’m here. It’s because I’m a unicorn! And if I’m not, then that’s fine too. So, it means that more, that I started a fire and it caught on, so.
NEFERTITI: Absolutely. Yeah. Cheryl?
CHERYL: Well, I want to give Unicorn John Stark such huge thanks. We’re so appreciative. So, everybody, Mac the Movie Guy. 732 videos on your YouTube!
NEFERTITI: Wow.
CHERYL: If somebody wants to see how it is that you critique a film, and it’s not just like, “I liked this.” It is so detailed. You go into so much about character, acting, directing, plot, audio description. That’s the place to go on YouTube to watch 732 reviews.
JOHN: They’re not all reviews. Some of them are talking about the Oscars. I did try to bring people in with Oscar talk, so.
CHERYL: Excellent.
JOHN: Most of them are reviews, though.
NEFERTITI: So, about that, what did you think about the Oscars audio description?
THOMAS: [chuckles]
JOHN: I liked the Oscar Audio Description. I feel like there was something weird about the red carpet, but I can’t remember what it was. But the actual show was great. And I know [laughs] you did it. Yeah. Yeah. Yeah, the Oscars was, the show was great. I can’t remember what it was about the audio description for the red carpet though.
NEFERTITI: Maybe that there was hardly any because it was just talk, talk, talk, talk, talk, talk, talk, talk, talk. So, maybe like?
JOHN: That might’ve been it. I don’t know. You know, I don’t care about red carpet! I just was on it because I didn’t have anything else to do. So, it doesn’t really stick out in my memory. All I remember was was Hugh Grant just had that weird walk-off moment. But that’s it. Yeah. If you’d asked me a couple weeks ago, I might’ve remembered. I don’t know.
NEFERTITI: Well, you know what? You don’t have to remember because we can all go to MackTheMovieGuy.com and check out your review there.
JOHN: [laughs] Yeah.
NEFERTITI: So, do that, people. And, you know, full disclosure, I was one of the people narrating that, so that was a shameless question on my part. But thank you.
JOHN: Yeah, I knew. That’s why I said ‘cause I knew you did it.
NEFERTITI: [laughs] Yes! I appreciate that we got a good review from you. That means a lot.
JOHN: Yeah.
THOMAS: Cool. Cool. Well, thank you, John. This was good.
JOHN: Thanks, guys. Thank you so much for having me.
NEFERTITI: This was fantastic. Yeah.
JOHN: Yeah. If you don’t wanna set up your own thing, just throw me some follows or something and likes or something. Increasing my social media presence will end up increasing my voice in the long run.
NEFERTITI: Absolutely. Not everybody has to be advocate. Not everybody has to be a critic. But I do think it’s important that we support each other and we promote one another, right? Uplift. So, yeah.
JOHN: Absolutely.
NEFERTITI: Follow John everywhere. I certainly will. I’m really happy to get to know you a little better during this event. So, everybody, thank you for listening, whether live or on the replay through the Reid My Mind Radio podcast. We really appreciate you being here. And yeah, how do we close? I don’t even remember anymore. I’m so enthused by this conversation.
THOMAS: So am I. [laughs]
NEFERTITI: All right! See ya!
THOMAS: Peace, y’all.
NEFERTITI: Except not really, ‘cause I’m blind.
THOMAS: [chuckles]
NEFERTITI: Peace.

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THOMAS: Cool. Well, that concludes this week’s conversation. Why don’t y’all keep the conversation going on social media.
CHERYL: Use #ADFUBU, for us by us, #DescribeEverything, and #AudioDescription.
NEFERTITI: And hey, you know we’re out here, right? Mmhmm! Gathered and galvanized y’all. If you haven’t joined us yet, what are you waiting for?! You can find us in the LinkedIn Audio Description group and the AD Twitter community. We know that your participation will only make these spaces better.
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— 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!

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