MICHEL MARTIN, HOST:
We've talked on this program before about how doctors and hospitals are rushing to review or update their ethics guidelines in light of the coronavirus pandemic. These are the standards that health care providers use to decide which patients get lifesaving treatment and which ones do not. Many disabled people are worried that these standards of care may leave them at the back of the line for treatment if they get sick. And many of the guidelines for social distancing and quarantine leave disabled people, especially those who are deaf and blind, without a way to communicate or connect at all.
We wanted more insight on this issue, so we reached out to Haben Girma. She is the first deaf-blind person to graduate from Harvard Law School. She's been recognized around the world for her work advocating for people with disabilities. And she is with us now. Haben Girma, thank you so much for joining us.
HABEN GIRMA: Thanks for having me on your show. So as people heard, I'm deaf-blind. For communication, I'm using a Braille computer and keyboard. My interpreter types. And I'm reading in Braille, then voicing back with my own voice.
MARTIN: Oh, thank you so much for explaining that. I was going to ask you to explain that.
GIRMA: I could read your mind then.
MARTIN: (Laughter) Well, it's fair to say I think that a lot of people have anxieties about getting sick during this time. I mean, we've seen that in just the fact that a lot of people aren't going for routine screenings and things of that nature. But are you hearing from other people who are living with disabilities about particular concerns they may have if they get sick during this time?
GIRMA: Within the deaf-blind community, we'll use lots of different things for communication. I use Braille. Other people use tactile sign language where they put their hand on someone's hand to feel the signs. Someone else might do close-up signing using limited vision. So we have lots of different communication needs. And we're concerned that if we were to end up at the hospital, they would not provide communication access. There's this idea that because of the pandemic, civil rights issues go out the window and people no longer need to comply with civil rights laws. Very early on, I went to a grocery store. And the guy in front in the grocery store told us, due to the pandemic, they were no longer allowing service dogs into the grocery stores. And I had to remind him the Americans with Disabilities Act still exists, and they're still subject to civil rights laws.
I'm an attorney. I was able to advocate and gain access to the grocery store, but not everyone has the ability to advocate. And if I were suffering from the virus, I doubt I would be able to advocate for myself. So there are lots of layers of concerns that we would be discriminated against. We wouldn't be able to advocate when we were discriminated against. We couldn't bring interpreters or family members because we were forced to be isolated. So lots of concerns.
MARTIN: One thing that occurred to me as we were getting ready for this conversation, I was actually trying to open my phone up. And it wouldn't read my face if I was wearing a mask. And so I was thinking about the difficulty of reading Braille if you had to wear gloves or the difficulty of reading lips when someone is wearing a mask.
GIRMA: Oh, yeah. Yeah. So for face masks, there are face masks out there that are transparent, and someone who needed to be able to read lips could read lips through them. Unfortunately, they're not widely used. Also, the vast majority of deaf people do not rely on lip reading because it's very difficult to gain full understanding of what's being said through lip reading. A lot of deaf people rely on sign language interpreters. Sometimes that can be done remotely if the place has the technology and systems in place to offer that.
Deaf-blind people, those of us who rely on touch will not be able to use those remote services. We need someone to be there in person to help facilitate communication. And you can do that. You can get people - you can have the interpreters wear protective equipment. For me, I would not be able to read Braille through most gloves, possibly with very, very thin gloves. But then it's questionable whether those gloves would even be effective. But the people who were typing to me could wear gloves. It would slow down their typing, but they could still do it.
MARTIN: I want to quote something that you wrote. You were quoted in a New Yorker magazine article saying "there is an ablest assumption that causes some people to think it's better to be dead than disabled." Would you say more about that?
GIRMA: So many people, when they hear about my life as a deaf-blind person, they think, oh, I could never do that. And I've heard of lots of people say that they would rather be dead than to live as a blind person or as a disabled person. This is a widespread assumption in our culture that it's better to be dead than disabled. And there are people who think they're doing disabled people a favor by taking away their life. It's terrifying, but that idea is in our culture. And I want to help teach people to notice it, identify it and help us work to remove it.
MARTIN: What are some things that you would hope that people would be thinking about at this time even if they are not affected themselves personally or closely connected to someone who is living with a disability? Are there things that you would want our listeners to be thinking about right now as we confront these issues?
GIRMA: Everyone has the power and ability to give back to the community. So think about what you can do. And as you're thinking about that, make sure the things you do are accessible. So if you're at home, creating videos to share on social media, make sure the videos are accessible. If you write articles to post online, make sure your articles are accessible. And there free resources online that teach you how to make videos accessible - captioning, audio descriptions. If you do a podcast and radio, include transcripts. Transcripts help deaf and deaf-blind people participate in the conversation.
MARTIN: We have been speaking with Haben Girma. She is an advocate for people living with disabilities. She is trained as an attorney, as she told us. Her memoir is called "Haben - The Deafblind Woman Who Conquered Harvard Law," and it is out now. Haben Girma, thank you so much for talking with us. It's been such a pleasure. I hope we talk again.
GIRMA: You're very welcome, Michel. Take care. Transcript provided by NPR, Copyright NPR.