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

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

TR:

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

[drum beat fades in]

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

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

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

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

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

[shouting over a beat]

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

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

audio clip of TR’s youngest child:

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

Nefertiti

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

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

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

[talking]

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

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

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

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

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

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

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

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

TR:
She was forced to largely find her own way

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

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

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

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

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

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

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

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

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

TR:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Nefertiti:
Sí! Dominicana! Me gente!

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

[In the Heights trailer begins playing in the background]

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Nefertiti:
Yeah.

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

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

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

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

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

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

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

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

Nefertiti:

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

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

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

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

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

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

Nefertiti:

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

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

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

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

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

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

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

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

Like my last name.

[outro music]

Peace.

Hide the transcript

TR:

Happy New Year Reid My Mind Radio Family!
My name is Thomas Reid, host & producer of this here podcast! Bringing you compelling people impacted by all degrees of blindness & disability.

Why you may ask?

Opening Mercy Mercy Mercy, Cannonball Adderley
— Applause
“You know, sometimes we’re not prepared for adversity. When it happens, sometimes we’re caught short. We don’t know exactly how to handle it when it comes up. Sometimes we don’t know just what to do when adversity takes over. And I have advice for all of us.”

TR:
Who better to get that advice from then those who have traveled that similar journey!

There’s no time to waste so let’s get it pushin’! Hit me with the huh!

Audio: Reid My Mind Theme Music

Cathy:
I’m Kathy Kudlick, and I’m director of the Paul k Longmore Institute on Disability at San Francisco State University. And I am also a practicing historian, which means I got a PhD in history.

TR:

I told you she’d be back!

Cathy was on the podcast with her colleague Emily Beitikss in September of 2020 talking all about The Superfest Disability Film Festival.

I knew I had to get her on when she mentioned her own experience with vision loss. Today, we’re focusing more on her story!

Cathy:
I was born totally blind with cataracts, at a time when they couldn’t really fix them very well. And so my parents in the first like, nine months of my life, basically, you know, kind of realized they were going to be bringing up a blind daughter, but they still didn’t give up.

TR:

Cathy describes her early experience with blindness as a Salmon swimming upstream, you know going in the opposite direction or against the current.

Cathy:

Yeah, it’s like I was going sighted instead of going blind.

At one point, I was seated on a chair, and my dad was taking a picture of me, and I reacted to flash. And so they said, Whoa, wait, there’s something that’s happening.

TR:

She was developing vision!

A family friend helped connect them with a prominent doctor who said he could help.

Cathy:

And he did.
When I was nine months old, they removed the cataract, my vision afterwards was still pretty darn crappy, as doctors would subsequently say, but you know, it was better than nothing at all, they said. And so I went through most of my life up until my teenage years with this pretty darn crappy vision

TR:

Additional surgeries gave Cathy more vision, but as we know, vision is complicated.

Cathy:

My brain didn’t learn when I was young enough to make the association. I can stare at something for quite some time. A lot of people will make that connection in five milliseconds, and I’ll be sitting there Okay. Is that a dog or house? Eventually, I’ll get enough input and enough clues and say yeah , it’s a house. Then I’ll fill in all the rest.

In the process of all this, I have Nystagmus, which is a muscle thing where the eyes basically jump all over the place. If I could just hold them still, I’d probably have pretty decent vision, but I can’t.

They say that Nystagmus later in life, it’s a lot, lot harder. And in my case, it’s all I’ve ever known.

— Music begins – calm melodic beat —

TR:

We often think it’s a natural process to adjust as a child, but some things require more attention.

Cathy:
I inherited my condition from my mother.

But society being what it is and prejudice being what it is, and denial being what it is. My mother did not want to admit this to me.

One of my big journeys in life is kind of reconciling well, who I was, who my mom was, and being able to talk to her about it. And even pretty late in life. She was starting to come around, but it wasn’t easy. It was really hard for her. She grew up in a different time, a different place.

— Music begins –
TR:

A time & place where disability identity wasn’t a thing.

Cathy’s specific experience with blindness is unique to her but what we all share is finding our path to acceptance. And that’s not often easy for those adjusting to becoming blind. In order to see how Cathy went from denial to Director of a disability Cultural Center we have to go back to her early experience with vision loss.

Cathy:
Growing up, it was just denial city,

It kind of reminds me of the cat that I have that hides under the bed, but its tail is sticking out.
They think they’re hiding, but everybody else is like, whatever, you know, go ahead and hide all you want.

The world really is set up for that kind of denial. I mean, you get all these enablers to help you do it because it’s so much easier for everybody.

TR:

Meanwhile, the person experiencing the loss, continues to struggle.

Cathy:
I loved my history classes. And I would just bury myself in a corner with regular print books, and a magnifier, but I didn’t want anybody to see me reading with a magnifier, if I can help it. I know I shook my head a lot to Read. I’d bob it back and forth, because of Nystagmus. I was ashamed of reading. it was like I had an accident or wet my pants or something to be caught reading in front of other people. It was so humiliating for me.

TR:

That pain goes beyond the emotional.

Cathy:
I remember getting my first cane and putting it in the closet, and it felt like it was just irradiating out from it, like, Oh my god, there’s a cane in there, you know, like, it was like a beast that I put inside.

— Ambient radiating sound begins …
— Music fades out —

I injured myself pretty significantly a few times by not wanting to use the cane because I could technically get by and if I use the cane and didn’t trip for three weeks, or three months or whatever, and I tripped the fourth week, Well, look, I got three weeks as a sighted person.

TR:
These experiences are not unique to Cathy. In fact, it’s more of a reflection on our society. A society that pairs strength with over coming and fails to see value or strength in difference.

Cathy:

They never bothered to teach me Braille.
And if I had learned Braille as a kid, when I was starting out, even if I turned out to be like a total 20/20 person, wouldn’t it be cool to know how to read Braille?

But, there’s so much stigma, things like, Oh, you don’t want to do that.

It’s so ridiculous. You realize how you’re tied up in little knots by society, by other people.

I could have been a more social person earlier on, I could have been a different person earlier on if I had not tried to pretend so hard that I was seeing like, everybody else.

TR:

We all travel at a different pace. Perhaps longer journeys accumulate valuable lessons.

Cathy:
Everybody makes it in their own way. There’s no right way to do it. Once you break that barrier, everything opens up, it gets a lot easier, but you got to get to that barrier. And however you can do it, if you even have a hint of how to do it. Go there early and go there often to get to this other place because it’s a lot better once you’re not in denial anymore, not trying to pass. Not trying to pretend you’re somebody else. That just frees you up, big time!

TR:

That’s a place that’s important and meaningful to you.

— Music begins –
Things you enjoy – not what some so called expert designates as appropriate for “someone with your condition”.

Cathy:

I started using those tools of being a historian to studying blind people. And that was really, really an important moment too, because you realize, one, you’re not alone. And to there is a history there.

I think knowing that there’s people like you that came before you, no matter who you are, and what identity you’re wrestling with, is so powerful, and so liberating, because it means you’re not the only one. You’re part of a tradition, you’re part of a process for a society. It’s not just us selfishly trying not to be treated badly.

TR:

That experience of discrimination or being treated badly, well that can ignite a fire. .

Cathy:

I’m mentioning the name, not to punish them, but just to show these were different times, and I’m not trying to make it up or cover anything over.

I had my first academic job at Barnard College.

I was starting to open up about my vision impairment and sort of being honest with people because I felt comfortable enough to do that.
but it came back to me that they did not want to keep me on, or they didn’t want to really consider me for another longer term job there because of my vision impairment.

They asked me to teach a large lecture class in front of a bunch of people just to see how I would do.

and something when they asked me to do that made me realize, like are you asking other people to do this.

So I said, No, I wouldn’t do it unless they were making all the candidates do it. Needless to say, that job application didn’t go much further.

TR:

That experience helped form a new way of thinking.

Cathy:

If I got kicked out of a job and didn’t get a job, because of my blindness, maybe there’s a flip side to this where I could say this is an identity and get people to think about identity differently.

This was before I knew much about disability studies, this field was kind of just taking off, there was no real disability history at that point.

TR:

So Cathy used her tools!

Cathy:
I started doing research in the French archives, where I did history of medicine, research, and I hooked up with researchers there Talk, talk to them. And it turns out, there’s a really great person that I have coauthored with Zina Weygand.

She introduced me around about scholarship and people and suddenly I was off to the races. It used a lot of talent that I already had in terms of this history research. I was basically off, off and running.

TR:

Her curiosity led to the discovery of a history of Blind people that I’m sure many are unfamiliar with. It began with a pamphlet.

Cathy:

It was called reflections, the life and writing of a young blind woman in post-revolutionary France, and it was handwritten and stuff. And I, I had a lot of trouble reading it. I sat in this archive, by myself. I had this one librarian that would read to me and helped me a lot. I ended up transcribing it and talking a lot with Zina , she was like, Madame history of the blind in France.

TR:

The booklet, written in the 1820’s, authored by Adele Husson, who wrote about her experience as a Blind woman growing up in France.

Cathy:

Nobody had ever written anything about that. We figured out she probably dictated it to different people because the spelling was different in different parts. And the handwriting was different in different parts.

TR:

Cathy and Zina were able to put together the author’s backstory through arduous research

Husson was concerned with being a burden to her family. In her quest to become a writer, she traveled on her own from provincial France to Paris. Her motives for writing weren’t just creative.

— Music ends
Cathy:
She wanted to ingratiate herself so she could get a residency in this place in Paris where Blind people could live if they did the right song and dance to get in. So she wrote this document, and they ultimately refused her.

Call to Action
— Music Begins
TR:

Are you enjoying this podcast? I can’t hear you.

“Can you dig it!” (Crowd roars in cheer!) – Warriors

TR:

One of the best ways to show your support for what we’re trying to do is to just share the show!
Tell a friend to tell a friend.

That way we’re more likely to get this into the earholes of those who need to hear it. And that’s the important part.

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Do you have a topic you want to recommend? reach out!

Email ReidMyMindRadio@gmail.com or call 570-798-7343 and leave a voice mail.

And of course Subscribe, wherever you get podcasts!
Thanks family!! And now back to the show!

— Music ends! —

TR:

Adele’s writing, let’s say left much to be desired, but she did achieve her goal.

Cathy:

We figured out at one point that she published more books than George Saund, who was a pretty famous writer at the time.

One of the things that was interesting, we found a book that had a preface, the story was really similar to her story, but it had a different name and the preface.

And it turned out that despite the fact that she said, Blind girl should never marry because if they marry a sighted guy, he’s just going to take advantage of them. And if they marry a blind guy, their prospects are totally bleak. They’ll die in a fire or something terrible will happen to them.

TR:

The research indicated Adele did marry…, a Blind man!

Cathy:

She died in a fire just like she predicted.

TR:

It’s unknown if her two children also died in the fire. Her husband, however, survived and went on to become well known in the Blind community.

Cathy:

He made this invention that you could use to communicate between sighted people and blind people with writing and translating.

He married a sighted woman and lived until he was about 70.

TR:

Cathy’s researched uncovered a community of Blind musicians and literary people in the 1820’s and 30’s.

Cathy:

Eventually, Louis Braille was part of that world, too. He knew Adele’s husband, we think.

[TR in conversation with Cathy:]

When you say a community at that time, I’m thinking, is this an actual community physically? Because how were people actually communicating if they weren’t in the same location?

Cathy:

Good question.

So there are two kind of physical possibilities for them.

One of them was a, the residents that she was trying to get into, and there were a lot of blind people that live there. And they had all sorts of rules about who could live there.

There were the schools that they all went to. National School of blind youth, if you were Blind, anybody in France, you went to this, you went to Paris and went to this one school. I think there was also one in Bordeaux, another large city in France.

In general, you knew people from being in the schools together.

TR:

There’s even some evidence of more social activity.

Cathy:
There was actually a place in Paris called Café des Aveugles, the Blind people’s cafe. It was kind of a seedy establishment in the seedy part of the city, but they would go and hold concerts there, met and exchanged ideas. We don’t know the details so much, it could be as much as like four out of the 40 people that were there were blind but you know, four blind people really make a stir. (Chuckles)

[TR in conversation with Cathy:]

Laughs!

Cathy:
You see these little glimmers of blind culture that are out there, but we don’t know until people really dive in to research it. With access to these archives now, kind of really hard and not organized and not funded. It’s, it’s a little bit harder, but I think the time will come eventually.

TR:

The value is in how these stories are interpreted and put to use.

Cathy:

Once I kind of made that connection, then I could frame a lot of my research as disability as a cultural identity, or as formed in history and as being part of history as opposed to just some weird, random medical condition that affects a few people that nobody cares about.

TR:

We’re talking about a significant shift in perspective. Moving away from a very mainstream view and offering something more empowering.

Cathy:

Don’t just try to fix me, let’s, let’s look at me and what I’ve learned as an expert, because I have a lot of talent and a lot of craft and perspective. I don’t mean me, Kathy, I mean the global we, people with disabilities who have perfected through studying, not just scholarly ways, but just kind of observing, you have to observe society pretty carefully to know how things work.

TR:

If you’re someone who has been running away from your vision loss, I need you to hear this.

— Music Ends

Cathy:

Passing, people disparage it all the time, but boy talk about being a really careful study or of society and knowing how the rules work. If you view passing as the first part of a two part exercise, then passing is a really set of useful skills to have.

TR:
You have to really know how things work in order to fit in. But it doesn’t have to be about passing.

Cathy:

You use those skills for something else and you stop passing and you say, okay , let’s pull it apart. Why do people cross the street that way? or Why do people think that this is important and not this?

Any question is fair game. Disability is so central in things that people have never thought to ask about in a cultural and social and emotional way before it’s always non-disabled people that are framing those questions, and when you put us center, us ask the question, it’s a different thing.

TR:

Centering people with disabilities, the results can be extraordinary!

— Music begins – something upbeat and in the spirit of conquering or coming to terms…

[TR in conversation with Cathy:]
At the time that you started to pursue disability studies, would you say you were still sort of passing? It sounds like you were on your way to…

Cathy:

I was on my way, I was on my way. And I remember going to my first society for disability studies, meeting and feeling like I sat at the bar at Star Wars. It’s like, there’s all these different creatures around and I was like, Okay, these are sort of my people, but some of them not all of them.

TR:

That’s honest. And I know I appreciate that because, I too was there.

But it ain’t where you’re from… it’s where you’re at!

Cathy:

I used to be terrified of other disabled people, I didn’t want to be associated with them at all, are you kidding?

That’s scary. Those people are way more disabled than me, they need more help than me and what’s wrong with me that I would identify with that when I could be in the mainstream, non-disabled society.

TR:

But then you start meeting the people and your opinion and feelings change. You realize well of course we’re not all the same, but some of these people I really do identify with. And for Cathy, that brought her to a realization.

Cathy:
I think I fit more with the people that are the disabled people than the non-disabled people.

In society, there are very few positive settings, where people with disabilities get to be a majority. And that’s what’s so great about our film festival when it happens in person. Superfest is like 4050 60% people with disabilities in a positive way, where people are having a good time, they’re teasing each other, they’re laughing together at the same jokes.

Suddenly, you’re in an environment where there’s more of you than there are less of you. It’s like Whoa. You kind of get a bounce in your step, or your wheels or whatever. And suddenly, you get to be a person that’s in a majority culture, in a way that’s very exciting and validating and powerful.

TR:

History helped establish this identity, meeting other Blind people helped it grow.

Cathy:

I did a training at the Colorado Center for the Blind about 20 years ago. It’s run by and for blind people. they make you do everything they’re blindfolded, wearing sleep shades. You learn travel, cooking. It’s really extreme, you go downhill skiing, rock climbing, all these things.

You learn not to be so afraid.

TR:

Afraid of what is often described as the never ending darkness! (Yuck!)

But fear, well, that’s just an acronym for False Evidence Appearing Real!

Cathy:
You’re taught travel, and everything by blind or low vision instructors. And you know, a lot of sighted people freak out about that. They’re like, Oh, my God, how are you going to be safe or whatever. And I’m thinking, if I’ve got to learn to travel and be safe somewhere, I don’t want that to come from a sighted person, I want to know that a blind person has figured out how to do it, and they’re going to show me.

TR:

Once again we see the role fellow Blind people can play in our adjustment.

Cathy:

Wow, there’s people that really do cool stuff and I can learn from this.

Sight isn’t everything in the entire world. It’s something to value, but it’s not the end all and be all there’s a lot of people that don’t rely on it and can’t rely on it. And they have lots of really interesting and fun and great ways to deal with it.

people focus on that light and the dark and all of that stuff and they don’t give you a place to really meet other people that have figured some stuff out. And I think that’s where your podcasts kind of great to be, you know, you meet all these people that are engaged and, you know, vital and fascinating and fascinated and, you know, wow. Once you crack that nut, I feel like things get a lot easier.

TR:

And if all that wasn’t helpful enough, Cathy offers another piece of advice for those adjusting.

Cathy:

I did a lot of therapy. Anybody that’s afraid of therapy, get over it. Find a good therapist. Get somebody that’s going to push you about this stuff.

I remember I had a therapist who didn’t know a ton about disability stuff, but he was still open, and he listened.

He kind of pushed me. At one point, he said, Would you rather be an incompetent sighted person? Or a competent blind one?

I sat with that question forever, because if I had known, that’s the choice that I was making, I think I would have freed myself up sooner.

[TR in conversation with Cathy:]

Do you think there’s anything about that journey that you actually had to go through in order to be where you are today?

Cathy:
Oh, wow, that’s a great question. (Pause)

Probably

I mean, I am who I am. And it’s all this, like, kind of jumble of what’s me.

TR:

She’s Cathy Kudlick…

[TR in conversation with Cathy:]
So Kathy, you already know you are…

— Audio: “Official”

member of the Reid My Mind Radio Family.

Cathy:
Yay! (Laughing) I was waiting, I was living to hear it. I was living to hear it!
(Cathy & Thomas laughing together fades out)

TR:

Cathy Kudlick, I so appreciate you and you taking the time to share your journey with the family.
And family is supposed to look out for one another. Sharing our journey’s because we know how that can impact another person experiencing blindness – whatever the degree.

You can find Reflections which contains the translation of Adele Husson’s original booklet along with thoughts from Cathy and Zina Weygand on Bookshare.org.
For that link, more of Cathy’s writing, transcripts & more head on over to ReidMyMind.com. And yes, that’s R to the E I D
(Audio: “D and that’s me in the place to be” Slick Rick)

Like my last name.

Peace!

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