Reid My Mind

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

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

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

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

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

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

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

TR in Conversation with Haben:
I am.

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

TR in Conversation with Haben:
Absolutely.

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

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

Haben: 01:42
Go for it!

— Repeats with a echo effect.

— Reid My Mind Radio Intro Music

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Haben: 11:56
Were you pleased?

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

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

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

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

34… laughs…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

TR in Conversation with Haben: 18:43

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

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

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

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

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

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

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

Haben: 21:47
So vice president Harris said…

— Audio from the now infamous meeting:

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

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

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

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

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

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

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

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

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

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

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

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

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

Now, back to the guidelines.

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

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

Haben: 26:24
Giggles!

Conversation. Plans.

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

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

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

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

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

TR in Conversation with Haben: 27:14

I’m a row cowboy. Lol.

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

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

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

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

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

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

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

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

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

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

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

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

TR: 30:31
Asshole!

Concise, right?

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

TR:
(Interrupting) No!

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

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

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

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

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

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

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

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

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

Haben:
Yes.

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

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

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

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

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

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

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

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

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

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

Haben:
and the last video was about chocolate.

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

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

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

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

Haben: 34:35

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

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

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

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

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

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

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

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

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

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

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

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

Big shout out to Haben Girma.

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

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

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

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

We have transcripts and more at ReidMyMind.com.

Now come on fam, say it with me…

That’s R to the E, I … D!
— Sample: (“D! And that’s me in the place to be.” Slick Rick)
Like my last name!
— Reid My Mind Radio outro
Peace!

Hide the transcript

— Ambient music begins…

TR:

Greetings Reid My Mind Radio Family!
Welcome back to the podcast bringing you compelling people impacted by all degrees of blindness and disability.
You know, we’ve been here since 2014 so make sure you take a look in the archive if you’re new in these parts.

My name is Thomas Reid and I get to serve as host and producer.
I like to consider each of these individual episodes as a part of a larger collective story.
If you know anyone new to blindness or disability in general, please go ahead and let them know what’s happening here.
I’m confident that they would find a lot of value in the lived experiences stored in these audio file (and transcripts).
All just waiting for the right person.

Today’s episode is the latest addition to this growing archive that will not disappoint.
So let’s get down to it!

Audio: Reid My Mind Theme Music

Qudsiya:

My story of blindness is, to take a page out of Michelle Obama’s words, it’s a story of becoming.

My name is Qudsiya Naqui. And I am a lawyer and I’m based in Washington DC. I use she her hers pronouns.

I am a South Asian woman. I’m quite petite. I’m about five one. Right now I have sort of long, dark brown black hair that’s very long because of the pandemic and I haven’t been able to cut it and have kind of medium brown skin and brown eyes.

TR:

Qudsiya is the host of Down to the Struts, a podcast that explores the inner workings of
disability design and it’s various intersections.

Today, she shares some of the transformational experiences along her journey that helped shaped her view of blindness.

At 2 years old, Qudsiya was diagnosed with a congenital degenerative condition.
By the time she began reading, standard print was sufficient.

qudsiya:

But I had trouble in dark and dim places.

We were blessed and fortunate to be able to live in homes that worked for me. That had lots of sunlight, and we had lots of extra lighting. So that was the way that we kind of help make the environment accessible for me.

My mom was proactive and had me in sort of rehabilitation services with the state agency.

— Melancholy Ambient Music begins
TR:

That’s the New Jersey State Commission for the Blind, where she received mobility training and other blindness skills as a child

Qudsiya:

My usable vision was so good when I was young that I wasn’t quite understanding sometimes, like, why I had to use a mobility cane because

oftentimes, the trainer would come during the day, and I could see really well during the day.

When I reflect on it, I’m like, why didn’t they train me with the cane? At night? When I actually couldn’t see and then I would understand the benefit of it.

I had a hard time explaining to people what my situation was also because I present as sighted I don’t fit the sort of stereotypical appearance of what a blind person looks like. And so I sort of passed for lack of a better word because I didn’t have a vocabulary to talk about my disability, I didn’t even use the word disability, disability wasn’t even in my lexicon when I was a child and a teenager and even a young adult. I really struggled.

TR:

As a child, struggling with bullying and making friends.

Qudsiya:

I do think it shaped a lot of my identity. I was quite introverted, I love to read. It definitely did shape who I was when I was younger in slightly more negative ways, I felt like it was something I had to hide and that I had some degree of shame about. That really affected my willingness and desire to engage socially and to make friends and to put myself out there.

TR:

There are two main perspectives in viewing disability.
Whether you’re familiar with them or not, you may recognize your own way of thinking.

The medical model. This approach sees the problem as the illness, disease or injury. The focus is on fixing the person.

Qudsiya:

I started losing vision really quite rapidly kind of at the end of college when I was 22. At that same time, there was a experimental gene therapy. That became available and my parents really were encouraging me. They had very good intentions, and they love me very much. They wanted me to feel good about myself and be successful. And their pathway towards that was, you know, to have this therapy that would help me either gain vision back or halt the degeneration.

I did enroll in the clinical trial. I really believe that people should have choices about how they want to live, I have a little bit more healthy skepticism about that, because so much of it is rooted in ableism, which is a term that I use a lot now, but was really unaware of at that time.

— Ambient music ends

TR:

That’s the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior.
It assumes that disabled people require ‘fixing’ and
defines people by their disability.

Qudsiya says she’s unsure if the therapy has helped reduce the degeneration but notes she didn’t regain any vision.
She did however slowly begin inching toward that alternative way of viewing disability, but first, she had to go through some things.

Qudsiya:

I went through a really dark time in my 20s, just trying to like sort of, quote, fix myself,

When I was young they told me that my vision would be stable, you know that I had nothing to like, quote, worry about, and it would just be the same as it was. And that was pretty doable.

TR:

While preparing to enter Law School at Temple University, Qudsiya began seeing a new doctor who explained that her vision loss was degenerative.

Qudsiya:

That really explained what I was experiencing in the two or three years prior, reading was starting to become really difficult.

Law school, is very difficult for a whole host of reasons. And it’s a difficult environment, it’s just a lot of work. It’s very hard. And there’s a lot of reading, like hundreds and hundreds and hundreds of pages of reading a week.

TR:

Since grade school, Qudsiya prided herself on her ability to study hard and have the grades to reflect that effort.

Her vision and grades both deteriorating she considered dropping out.

Qudsiya:

And somehow, I didn’t, I had a couple of really amazing professors. And then I got a really cool internship at the ACLU of Pennsylvania, the summer after my first year, because I happened to meet the Legal Director at a career fair. And we just totally hit it off. And she was an incredibly supportive person. And between her and a couple of my professors, I just, I stayed and I didn’t quit, and I didn’t give up. I started to explore text to voice software and the different kinds of technologies that were emerging. Blind people have been using it for years.

I kind of taught myself to learn by listening because I’d always been a visual learner. And I had to completely transform the way my brain worked. And I was able, it took me a long time. And it was hard, but I did it.

TR:

The grades improved, her self confidence returned and she was making strides in her blindness journey.

Qudsiya:

Oftentimes, a lot of sighted techniques are foisted on you. Like there’s always the imperative for you to use your eyes. But that was the first time I started to realize you know what, like, it’s not about like forcing me to use my eyes if my eyes aren’t the most efficient way to get something done. And so I started to like embrace like new Non sighted ways of doing things which made me a lot more efficient and made things easier for me.

The day that I said, I need to use jaws 100% of the time, like changed my life.

TR:

But what about accepting that white cane?

Qudsiya:

There was so much stigma for me associated with it. Shame.

I got myself into real difficulty. There was one time I was in Penn Station, and I fell on the train tracks.

TR:

Thankfully, the train wasn’t moving and someone quickly pulled her up.

Although already familiar with proper cane technique, Qudsiya wasn’t a practicing user. Living in New York City at the time, she
reached out to the New York Commission for the Blind and got herself an Orientation and Mobility instructor.

Qudsiya:

I said, I need you to force me to use it in front of you until I get to a point where I’m okay with it in myself.

We worked every day a couple times a week for like an hour and little by little after a while, I started to just feel comfortable with the cane.

I went from someone who would carry the cane folded up in their purse, never even think about it, to a person who now uses a cane pretty much all day all the time and never is without it and has a very healthy relationship with it. That took a long time. And it took a lot of struggle and a lot of moving past my own stereotypes and my own ableism

TR:

Qudsiya offers some additional thoughts on what could be helpful in decreasing the stigma associated with blindness and disability.

Qudsiya:

There’s such a lack of education in a young age to a culture eight children to the concept of disability and like these disability positive messages.

I just remember in high school I never learned about the ADA, I never learned about the Rehab Act, I never learned about disability rights history.

I feel like if I had existed in an environment that was giving me all these positive messages and welcoming messages and accessible messages about who I was, and the fact that my disability was okay. I think my outlook would have been quite different. But I was in an environment where my disability was sort of invisiblized. I see that changing now for young people. But I think we have a long way to go.

TR:

Another transitional moment for Qudsiya along her blindness journey came when she experienced job discrimination.

Qudsiya:

That was the first time in my life, I had been exposed to disability rights and Disability Law and the civil protections that are available to people to prevent against discrimination. And I didn’t really understand that I had been repeatedly discriminated against in various work settings until I had this experience that became so extreme that I had to get an advocate to help me.

TR:

She credits that person with changing her life.
Helping her become clear about the problem and to see things from a different perspective.

Qudsiya:

Okay, it’s not me, that’s the problem here. It’s the system. That’s the problem. And it’s a system that is not designed to give me access, and I need to fight for that access.

— Music begins – a bright melody that moves to a driving beat…

TR:

The social model of disability.

This views disability as a part of life and not the problem.
Rather recognizing that society erects barriers in various ways that can limit opportunities.

Qudsiya not only learned how to advocate for herself, , she found a community of people who also had a positive outlook on their own blindness and disability.

Moving to Washington DC from New York City, she was introduced to another Blind Lawyer.

Qudsiya:

She and I actually connected over something completely unrelated to blindness. We connected over the fact that we were both athletes. She was a cyclist and runner, and I was a runner also.

She was starting up this sports group in DC called the Metro Washington Association of Blind Athletes. And she kept encouraging me to come and try out tandem cycling.

I hadn’t been on a bike since I was a little kid.

I didn’t know anything about tandem. I was like, this is gonna be a disaster.

Finally she pushed me and I went and I got really into it, I just fell in love with it.

TR:

That led to other sports and activities like adaptive rock climbing,
guided running and most importantly friendships with other Blind people.

Qudsiya:

That was really transformative, mostly because I never had Blind friends in my life. And so I suddenly had this massive, wonderful, supportive, fantastic community of other Blind people that were doing all sorts of things had all sorts of professions came from all different types of backgrounds. And we just had fun together. And we support each other.

TR:

That support is invaluable. From the practical to the emotional, helping you become your best self.

Qudsiya:

I’m like a b minus blind person, and I’m trying to get to an A plus.

TR:

I think she’s being tough on herself.

Even if we’re not being graded, a community of people to learn and share with along any journey is important.

Qudsiya:

I started on that journey kind of later in life, as opposed to some of my peers who were born blind or lost their vision when they’re really young. They really became resources to me, and I just started to see the world really differently.

I’m also part of another new group that just started last summer. It’s called WOC World. W O C. It’s a group for blind women of color – a virtual community of blind women to support blind women of color.

TR in Conversation with Qudsiya: 39:15
I always like to highlight the importance of meeting people. Because I think it plays a big role. I always bring it back to the podcast, because that’s what this podcast is all about. Not everyone is in an area where they can actually have access to all of these people. And so that that transition process that I think really is impacted by meeting people may take even longer because you have no sort of model of what blindness can actually be.

— Music ends with an ambient fade out

TR:

Qudsiya is a fellow podcaster. She’s the founder and host of Down to the Struts.

Qudsiya:

A strut is like an engineering device that you’d use to hold stuff together.

It’s sort of evokes this idea of like, what are the building blocks? What holds the world together? And how do we change structures and systems.

I wanted to make non disabled people see why they need to think about things from a disability lens and why that’s important and why we should care about it.

TR:

While she was being pushed to write and publish law review articles she found her heart just wasn’t in it.

Already a consumer of audio content including books and podcasts,
she recognized the opportunity to explore some of her interests and expertise.

Qudsiya:

The article I was working on was about disability, specifically disability in the US. And its intersection with immigration, which is one of my areas of expertise as a lawyer.

I really care about disability and its intersections with other types of things like race or other types of policy issues like disability, unemployment, disability and health care.

And I am a person who has experience with like policy and research and these sorts of things.

I really care about this area of work. And I love audio content. And it’s a pandemic, and I’m sitting at home and I got nowhere to go and nothing to do. And I was like, You know what, I’m gonna do it. That’s how Down to the Struts was born.

— Music begins a Hip Hop beat opening with hi hats…

TR:

Occasionally, I’m asked about starting a podcast. My advice closely aligns with the steps Qudsiya lays out.

Qudsiya:

I decided I wanted to do an interview style show and bring a mix of sort of people with lived experience, people who are experts in their fields to talk about sort of very broadly speaking, disability design and intersectionality.

I got a team of people together.

I don’t know how to design a website, I don’t know how to audio edit, I got a lot of brains together. And at first it was just for advice. But then a couple of friends of mine, really like wanted to be involved and wanted to work on it. And I was so touched by their desire to be supportive, they just loved the idea of the project.

I had a focus group of a whole bunch of friends that helped me vote on the title.

We launched our first season in October of 2020. And there’s six episodes, and we’ve just launched season two.

TR:

She narrowed her subject, figured out what aspects best fit her skills and interests.
Assembled others for advice and ended up with a team.
She’s also using a seasonal approach which I highly recommend.
It takes away some of the stress in producing regular content.
And of course, she got feedback on her podcast name. Did I mention she has herself a team?

Qudsiya:

I went to Barnard College, which is part of the women’s college that’s part of Columbia University. So I went looking for a student who was interested in audio editing. That’s how I came across Anna Wu, who is a junior at Barnard.

She brought along her friend Adrian Kahn, who does our transcripts.

I have two other friends. Ilana Nevins is our audio editor and my friend Adriana pole who is fabulous social media coordinator and manages all my Twitter and Facebook and Instagram so I don’t have to. (Laughs )

I’m scared of social media!

TR:

Yes, I’ll admit it, I am a bit envious of her team.

A lot of thought and planning went into the creation of Down to the Struts. Ultimately, it’s figuring out what you want. I get the sense that this is how Qudsiya operates.

Qudsiya:
I realized very, very quickly, that I did not want to be a practicing attorney, I think I probably even knew that before law school, but I knew I was interested in immigration, and I knew I was interested in kind of policy.

A lot of the policy people were like, Well, you can’t really fix the system if you don’t understand the experience of people who are going through it.

So I did practice immigration law, representing asylum seekers and survivors of domestic violence.

And then I went to a different organization where I was managing the program that was delivering services to unaccompanied children who were in federal custody, on the border and in other parts of the country.

TR:

She continued doing that work for a different organization while expanding into disaster recovery and other areas.

— Music ends…

Qudsiya:

now most recently, I’m at a big research like policy institution working on civil court reform work. Making this civil court system for like people who experience evictions and debt collection lawsuits and have to deal with child support cases and things like that to making the system more accessible especially for people who don’t have lawyers, and I bring a lot of my disability kind of focus in there too, because, especially with all the technology and courts, like a big concern is like making sure everything’s accessible.

I feel like, it all kind of bleeds together.

TR in Conversation with Qudsiya:

What do you want people to sort of take away from your podcast?

Qudsiya:

For disabled people, I want them to leave the podcast feeling like their issues are being addressed, that I’m exposing and uncovering the barriers they face and providing positive solutions and proactive solutions to how we can break down those barriers and fix those problems. And for

For the non disabled people I want their eyes to be opened to how the systems and structures that we live inside, whether that’s the immigration system, whether that’s the education system, whether that’s health care, how, they affect disabled people, and how ableism plays a role in that. So that they can walk away and know, there’s solutions to solve them. And I want that information to get out to the people who are the decision makers and the stakeholders in the system so that they can start to make change.

TR:
Think about the importance of all the transitional moments Qudsiya experienced.
From her battle with the white cane to experiencing discrimination on the job
which led to her meeting people who would come to positively influence her life.
Combine these experiences with her own positive attitude and drive and consider her advice for those new to vision loss.

Qudsiya:

Everyone has their own journey and their own experience and their own way of going through those stages of grief and getting to the other side, or whatever the other side looks like, and that’s okay. And you have to be kind to yourself, but know that there’s a community waiting for you. And there’s a lot of possibility and that you are a whole person. And your blindness is a part of that. And it is a really beautiful part of that. That’s something that you should honor about yourself.

— Music begins, a bright inspiring Hip Hop beat

TR in Conversation with Qudsiya:

Qudsiya, you know that you are now an official, and I want to say it twice, an official member of the Reid, My MindRadio family now that you’ve been on the podcast, you know that right?

Qudsiya:

Oh, that’s awesome. Thank you. Thank you for welcoming me into the family.

(TR & Qudsiya laugh…)

TR:

To get in contact with Qudsiya and or where to find the podcast;

Qudsiya:

You can email us at down to the struts@gmail.com. You can find our website which is www got down to the struts.com. We’re also on Facebook, Twitter and Instagram at down to the struts. And you can subscribe rate review the podcast on Apple podcast, Spotify, Stitcher, or wherever you love to listen, so definitely check it out.

TR in Conversation with Qudsiya: 1:00:19
Spoken like a true podcaster.

(TR & Qudsiya Laugh)

TR:

I really liked the way Qudsiya identifies and appreciates the different moments throughout her journey for the value they helped bring to her life.

Once again shout out to Qudsiya, I really enjoyed our conversation.

If you too enjoyed it well you can always feel free to let me know that or any other comments you may have by emailing me at ReidMyMindRadio@gmail.com.
Tell others about the podcast so they can listen for themselves. All I want to do here is to reach as many people experiencing vision loss as early as possible.

You know we have transcripts and more over at ReidMyMind.com right?

And I know you know, that I know you know, it’s R to the E I D
(“D, and that’s me in the place to be! Slick Rick)
)
Like my last name.

Audio: Reid My Mind Outro

Peace!

Hide the transcript