Music begins: A melodic, slightly distorted whistling flute… the melody loops lowering in pitch…
R: 00:02
Greetings Reid my Mind Radio family.
If this is your first time here, allow me to welcome you. My name is Thomas Reid. I’m the host and producer of this here podcast. We’re in the final half of what is our last season of 2022.
We call it Young , Gifted, Black and Disabled.
Music continues: … opening into a mid-tempo groove supporting the melodic flute.
By coincidence, my guest today, like our prior guests, Haben Girma is also deafBlind. As we know, disability falls on a spectrum and is experienced differently by each individual.
Hearing two different Black deafBlind experiences. Well, that’s just going to add more dimension to the conversation. Keep that in mind as we get into it. Let’s get it!
Audio: Reid My Mind Radio Intro theme music
Marc: 01:03
well, my name is Marc Safman. I’m a light skinned Black man with black, gray at the temple hair, and I typically wear my glasses, but I’m not wearing glasses, and a blue t shirt. Got a blue background behind me. I’m considered sighted deafBlind.
TR: 01:20
at 16 years old Marc underwent acoustic neuroma brain surgery. In addition to auditory processing challenges, the surgery left him deaf in his right ear, he began experiencing progressive vision loss about 10 years later, and is now legally blind.
Marc: 01:34
I’m kind of like, okay, I’ve just got to find ways to do that. And enjoy what I’m looking at in the world, what I’m hearing in the world are people who take the time to give me the time to take my phone out.
TR: 01:47
Marc uses Google transcribe the speech to text that enables him to understand exactly what a person is saying. With magnification. He’s even been able to function using pen and paper to interact with others. Yet, as you can imagine, there are some real challenges
Marc: 02:02
a lot of the issues about my disability was kind of like, well, you know, you get older, and you really understand yourself a little bit more. You understand how your disabilities were impacting you, you understand the solution. And then you see the problems that I face; staying employed, interviewing, just trying to socialize with people where you really can’t hear, or you really can’t see someone looking to make eye contact with you.
TR: 02:27
We’ll see just how that difficulty socializing impacts all aspects of a person’s life. marc’s either an optimist or he just has a good sense of humor, to note the benefits?
Marc: 02:38
Some people try to engage me with the point of mugging me. And I’m kinda like “sorry did you say something?” They say something snippet, I’m saying “I’m sorry I don’t hear very well so I have a hard time understanding what you’re saying. “And they walk away.
Audio from “Running Scared”
Mugger: Give me your money.
Potential Victim: “What?”
Mugger: You heard me…
TR in conversation with Marc: : 02:52
(TR & Marc Laughing)
that’s a good defense.
TR: 02:57
In addition to what I’m gonna call the ableist muggers, sometimes those who walk away are potential employers, being deaf can make interviewing a real challenge, especially when the interviews consist of multiple people asking questions, Marcs access accommodation doesn’t always suit potential employers,
Marc: 03:17
I’m a Paralegal and I work in anti-money laundering compliance, Thomas, so I deal with people in financial services typically don’t like to write things down. There’s nothing you can do. And I feel like also I had interviews where, I would have to name them, the National Bank of Pakistan, these kind gentleman took turns sitting next to me, talking in my ear, and writing things out very patiently. Not one of them had a problem. People who make the accommodations, they’ll go out of their way to try and help you while you’re on a job. The people I used to work with were some of the most excellent people on the planet. The technology was not as developed back in 2006 2010. They would all routinely just talk or write things out for me.
Music begins: A piano melody with jazzy horns leads into a melancholy groove.
TR: 04:04
Sure, we all can appreciate those who just seem to automatically get it. They may not know the right thing to say or do but they connect on pure humanity. They’re open to communication and want to succeed with others.
Marc: 04:19
You will learn on the job that there are no laws protecting disabled people, employers, they frequently have a mandatory arbitration clause. Everyone knows that it’s a very formal. You have to go through the EEOC and typically the EEOC will probably reject your case and tell you to go file a lawsuit. And that is very long, lengthy process. New York City Human Rights Commission from my experience has not been very helpful. They have declined to prosecute multiple situations. They have rejected what they consider one off situations. I submitted the same freaking complaint with so many different companies trying to access CART, or the real time captioning open captions at events for various professional or cultural events.
TR: 05:07
CART, or the human generated real time captioning is a must for Marc and others at networking events, conferences, community forums. They can feature multiple speakers often slide deck presentations or references to other visuals. Therefore, context is very important to truly understand what’s being transcribed. It’s not accessible through an apple auto generated captions. Marc says there’s no real help and even convincing organizations that they are indeed supposed to provide this access
Marc: 05:36
The Mayor’s Office on Disabilities here in New York City has one of these useless programs where they will contact an organization and say the accommodations are the law. But if that organization just says, Hey, no, we’re not going to do it. MOPD turns around and says, Well, now you can file a complaint. I have filed complaints and they take multiple years to resolve with simple CART text to speech complaint.
TR: 06:01
Even when he’s been invited to attend specific functions and asks for the accommodations CART is not provided. There are loopholes that basically allow organizers to put the responsibility on others like the event venue, who end up ultimately pointing the finger back at the organizer. Meanwhile, Marc not only request CART Services, he’s prepared with the names and contact information for providers,
Marc: 06:28
all you need to do is contact the vendor. I don’t care if your host doesn’t know what they’re doing. That’s not your host’s obligation. All these organizations will punt, and the law’s so vague, the Division of Human Rights Law hopefully clarify that. I’m not settling out of court with these folks
TR: 06:44
doing so wouldn’t benefit the community.
Music fades out.
TR: 06:51
Marc has enough usable vision where he can often read with the help of magnification. He knows basic Braille and advocates for its wider availability, and points out where once again, the deafblind community is being left behind.
Marc: 07:04
Blind groups have prioritized ballot Marcing machines, or having accessible ballot through screen readers. And screen readers are totally unhelpful if you’re deafBlind.
Synthetic Voice: ” Synthesized speech won’t help someone who is deafBlind!
the blind community that I’ve encountered here in New York has been very reluctant to embrace Braille ballots. I’ve been pulled directly by other advocates that they feel that requesting a Braille ballot would be a negative experience for someone. I don’t see how there would be a pejorative guilt trip or make anyone feel like they’re being singled out. Braille is critical. Braille ballots are critical.
TR: 07:46
While Braille isn’t considered a technology solution, there is a technical component with electronic braille displays, which makes CART also accessible to Braille readers. As we know the true barriers for those with disabilities are human made. Consider the mobility challenges for those who are deafBlind. Yet the CO navigator or support service provider is a program that can greatly impact the community.
Marc: 08:11
There’s a strong preference for Co-Navigator, as the term.
Co-navigator helps the deafblind individual with mobility, running errands, helping the person conducting transactions, shopping or whatever
TR: 08:25
sounds like the benefits could even extend to help reduce some of the challenges like employment, community involvement, and social isolation.
Music begins: A slow, driving haunting groove
Marc: 08:34
It is incredibly offensive that We have a governor and a state legislator that basically doesn’t care. Hearing professionals, nonprofit groups are well aware of the importance of the CO navigator program, they have done absolutely nothing. The National Association of the Deaf has done nothing. ESOD here in New York, their state affiliate, they do nothing ACB, NFB, nothing!
TR: 08:57
I have to say I haven’t verified this.
However, I do know that during my own time spent a bit more involved with blindness organizations. I can’t recall much in the way of advocacy for deafBlind specific issues.
In all fairness, Marc did include the AFB in what I believe is, a call for action.
Marc: 09:18
If they did something well, it’s like, I think we would have a program already.
TR in Conversation with Marc: 09:21
if the blindness organizations and the other organization was to get involved. What exactly is the involvement that’s necessary? We’re talking about more folks advocating for it? Or is there something very specific that they’re not doing that they could do?
Marc: 09:38
Helen Keller National Center cannot advocate because of their federal funding.
TR in Conversation with Marc: 09:42
Okay.
TR:
I think he’s looking for advocacy. And maybe that’s not actually a lot to expect from advocacy organizations, especially considering what happens when many in the deafblind community try to participate in community or political events.
Marc: 09:57
You really have a hard time participating when you can’t get the electeds to make accommodations at their events, they don’t care. There’s a fear of disabled people still, and it’s deep. And it’s one of the reasons why, even within the progressive political community, people won’t touch it. Because they don’t think that there’s votes in the disabled community.
Music ends as if highlighting the next statement.
And they don’t realize the voting bloc power that is growing.
TR: 10:24
that block can be really effective, especially with solidarity, disability, solidarity, that means recognizing that you and your specific disability doesn’t truly win. Unless we all win. Along with recognizing other disabilities. That also means the multiple intersections that we bring, so called race, gender, sexual orientation, etc., etc. With this in mind, I asked Marc, a very specific question around representation.
TR in Conversation with Marc: 10:44
any conversation amongst the deafblind community about Helen Keller, in terms of representation in the media? If there’s anything about deafBlindness, it’s always Helen Keller, and I’m just wondering, do you have any thoughts about that? Is there any sort of discussion about that any feelings?
Marc: 11:10
Some people have concerns about she was from an upper middle class, Southern aristocratic family. However, it does have ties to the Confederacy, I understand that she would have to be from a very well off family in order to have a private tutor. She’s elevated for commodification. It overlooks the fact that Helen Keller was a radical, and very much advocate of workers’ rights, women’s rights. She was not a weak woman. She was a pretty strong willed individual who spoke her mind very clearly. And pissed off a lot of people,
TR: 11:43
the way Helen Keller story is told, often doesn’t present the nuance within her own life. More importantly, that simplification allows us to not consider others who are deafBlind people who are deafBlind.
Marc: 11:54
People just want to latch on and commodify things and oversimplify things so that they don’t have to think.
When people say their disability diversity consultants, they simply don’t actually understand the accommodation, or the needs or interests or concerns of the community, they just talk about these very vague solutions. They do these LinkedIn hashtag strategies, that really doesn’t help inclusion. you’re playing along with a narrative that’s controlled by neoliberal elites, not people. It’s only through challenging the elites, and demanding on meaningful laws, programs and services that respect individuals for their humanity.
CO-navigator services, providing Braille ballots, Braille literacy, eliminating tokenism.
Why don’t we have accommodation Jobs Centers that the government could just basically simplify this for all business efficiency. We have the solutions, you have no excuses for denying opportunities to people just because they need accommodation.
TR: 12:59
As a society, we seem to be okay with accommodations that are easiest for us. And too often the undue burden is put on the disabled person. It’s like we fail to see the value of accessibility,
Marc: 13:12
that allows people to live an independent life without having to rely on family and friends.
Music begins: An upbeat, feel good, inspiring horn melody opens to a fun and cool Hip Hop beat.
TR: 13:21
I’m always reminded that an independent life should be dictated by the individual, what constitutes an independent life, for me, may be quite different for you. And that’s fine. Similarly, this individual approach applies to access.
Marc: 13:37
So even if you have a solution, the solution still needs to be tailored to the individual. And that is the tricky part.
As Andrew Cuomo demonstrated, in his covered briefings when he was refusing to provide in frame ASL, he can’t just assume that just because someone’s deafBlind, doesn’t mean they’re the same type of deafBlind. I don’t need pro tactile. You providing pro tactile interpretation, it’s not going to help me. The CART solution is not going to help another deafBlind individual. So you can’t say, Well, I provided ASL.
Music continues…
TR in Conversation with Marc: 14:12
Tell me a little bit about what you like to do when you’re not doing all of the advocacy.
Marc: 14:19
Well, I like art. I take a lot of photos because, well, it helps me see things. You’ll end up taking like a lot of photos. I don’t necessarily see what I’m looking at until you look at the photos.
I like going to opera, sporting events. I love baseball, hockey, soccer. Well I’m not tall and I’m not a big guy, so I’ve never went out for football and I’ve never tried basketball.
TR in conversation with Marc: 14:38
You used to play baseball?
Marc: 14:41
Oh, yeah.
I used to play shortstop, third base. I’ve been on the all-star team a few years.
TR: 14:45
That’s sort of how I like to think of my guests, all stars, or as I tell them all here on the podcast; official!
That’s right Marc, you’re an official…
— Airhorn
… member of the Reid my Mind Radio family Brother.
If you want to reach out and connect with Marc, you can find him on LinkedIn.
Marc: 15:03
That’s probably the best way to reach me. My name Marc saffman,
(spelled out) M A R C, S like Sam, A like apple, F like Frank, M A N.
TR: 15:15
I met Marc on Twitter. I can tell he’s a persistent guy, just by the way he followed up with me.
He continues to contact and schedule meetings with elected officials from local to federal. He shows up for council meetings and continues to request access. He follows up when the access isn’t granted.
He’s an advocate.
And as we know, there’s all types of ways to advocate and inform…
In fact, I’ll ask you to advocate for this hear podcast. All you need to do is to tell a friend to tell a friend that they can find Reid My Mind Radio wherever they get podcasts.
Transcripts and more are at ReidMyMind.com.
And as all good advocates know,
That’s R, to the E, I,… D!
Sample: “D, and that’s me in the place to be!” Slick Rick.
TR:
Like my last name.
Audio: Reid My Mind Radio Outro
TR:
Peace
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