Vision loss's role in accessibility advocacy with Rebecca Alexander

For Rebecca Alexander, LCSW-R, MPH, every daily task day is impacted by the effects of Usher syndrome. Having completely lost her hearing and with only 5 to 10 degrees of central vision, Alexander said walking into a doctor's office that practices accessibility for those who are blind or low vision makes a world of a difference. She chats about living with Usher syndrome and her work as a disability rights advocate and psychodynamic psychotherapist in an exclusive Optometry Times interview.

Video transcript

Editor's note - This transcript has been edited for clarity.

Jordana Joy:

Hi, everyone. I'm here today with Rebecca Alexander, a psychodynamic psychotherapist with many other titles under her belt. She is an author, public speaker, extreme athlete, and disability rights activist who has been losing both her vision and her hearing due to Usher syndrome type 3 since she was a teenager. She's here to chat about her condition and the role it plays in her work as a therapist. So welcome. It's a pleasure to have you.

Rebecca Alexander, LCSW-R, MPH:

Thank you. It's pleasure to be here.

Joy:

Awesome. So to get us started, tell me a little bit more about your condition and how it affects your day to day life.

Alexander:

Yeah, so I have a condition called Usher syndrome. Usher syndrome is the leading genetic cause of deaf blindness in the US and around the world. It's an orphan disease or rare disease, which means that there's a much smaller population that's affected by it. But really, actually, what it means is that we still don't have the entire population diagnosed. So there are a lot more people out there who just have not been diagnosed. And that's why a lot of the awareness and disability rights advocacy I do is so important because we're trying to find our community.

But the way that it affects me on a day to day basis is probably too much to even try to put into words because it affects and impacts everything that I do. I think what's most important is I'm cochlear implanted. Without my cochlear implants, I hear nothing and I always sort of just joke with people that nobody sleeps better than I do in New York City, because I take them off and it's like, totally quiet. Silence is my religion. But I have probably about, maybe 5 to 10 degrees of my central most vision. So anything from navigating technology on the computer, anything from just having to scan my environment, there's so many ways in which it impacts my life. But I think what's most important is that it's incredibly humbling. We all have something. This is my stuff and it is a constant reminder of how important it is sort of to have humility and patience, which is something that seems to be in short supply these days.

Joy:

For sure, absolutely. So you've mentioned a little bit about your cochlear implants. What else helps navigate those challenges for you when it comes to Usher syndrome?

Alexander:

Yeah, so I have a cane that I use. I use what used to be called the blind person's cane or whatever. Some people call it a stick. I call it my mobility cane, because it actually helps me maintain my independence, my autonomy, my mobility. It's a relationship that I've had to develop. It's funny that now I look at this cane, and I feel like we're best friends. And I remember in my own process of coming to terms with this condition and having an evolving identity from being a fully able-bodied person to somebody with a disability that I used to hate this thing. Now, I don't leave home without it.

Joy:

For sure, absolutely. So how does your condition impact your approach to your work as a psychotherapist?

Alexander:

That's a good question. I think that one of the things that I really enjoy about my work is that I like getting in the weeds. I like really trying to understand what makes people who they are, and why we behave and do the things that we do, and how we often times get in our own way, when it's not the other obstacles, but sometimes our own ways in which we sort of keep ourselves from being able to have the connections or the relationships or be able to pursue the things that would be most meaningful for us. I think in my life outside of being a psychotherapist, I'm usually trying to address the accessibility barriers and the ways in which environmentally, structurally, institutionally, we have ways in which we are not able to access what we need or be able to reach our potential. So being able to help someone from a more interpersonal and personal perspective get out of their own way, relieve themselves of their own barriers, is part of what I love so much about my work.

Alexander:

For sure, absolutely. So what do you wish that both the general public and medical professionals, specifically other therapists, knew more about living with vision loss?

Alexander:

As I think most people are not so aware of is that we think of blindness, 1 of the biggest messages you hear these days, is that blindness is a spectrum. You know, that we all all experience low vision or blindness in different ways and there's not homogeneity to vision loss, just like there's no homogeneity to populations or anything. And so being able to understand and see people as individuals I think is particularly important.

I think that for medical providers, understanding that when you are working with someone in your office, sometimes when you're a clinician, it's something that you're so exposed to that there's that sense of, not ambivalence, but just, you become numb to it. You become a sort of accustomed to what you're doing day in and day out: here are the numbers, here are the ways that we can help support you, or this is what your diagnosis looks like, and the humanity gets lost. And I think that it is so important for us to remember that when you're giving someone a diagnosis, or when you're telling them what their visual acuity is, that you're dealing with a human being, with someone who actually takes that and leaves your office and has to go out into the world and needs to have some sense of competence and confidence in you as a medical professional to be able to be that gatekeeper, the first one either providing them with this information and understanding the power, you have to be able to influence someone in a positive way or a negative way. So even just being able to be fully present and make eye contact with someone when you're doing this and not just looking down at your paper. That humanity, I think, making sure that that's a part of your work with your patients.

And the general public, 1 of the things I love about being a psychotherapist is that when I'm on the street and I'm using my cane, I suspect that I'm the last person anybody would turn to, or look to, to ask for help or directions. And yet blind people, low vision people, often times are some of the best people to turn to in terms of navigation, because of the ways in which we've had to be creative and navigate thoughtfully. So I would love for people to be curious about when they see someone who has low vision or blind, what their preconceived beliefs are, or ideas are about what that means. Do you first notice what they can't do as opposed to what they can do or who they are?

Joy:

For sure. So how can practice owners or physicians in general keep vision loss in mind when they're trying to make their practice or their services more accessible?

Alexander:

Yeah, so I think 1 of the main things that you can do is having the accessibility features. You know, when people talk about accessibility, it sort of seems like, "Oh, yeah, that's so nice. Things are accessible, yay." But really, I encourage people to consider accessibility, whether it's in your website, or in the actual physical location of your clinic or store, that you're investing in your future as someone who is a provider, but also for your own needs. So I think that 1 of the best things that you can do is have large print options. If there's something that's being offered, when you have accessibility features, you can invert colors. You can manipulate whatever it is, the information is, so that the person who you're serving can actually read, or maybe there's a voiceover, to have access to the information you're providing, as opposed to relying on somebody else to have to read it for them.

Whenever I go into a doctor's office, and they say, "Here, fill out this form," and it's in tiny font that's, you know, clearly the printer was on its last leg when they printed it out in the first place. That tells me that, I know I have to fill this out, but it immediately tells me that this is a place that doesn't get it. This is a place where I'm going to have to come and advocate and I'm going to have to explain things to people. I'm going to a doctor's office and having to explain to them. There is nothing better than going to a doctor's office as someone who's low vision or blind who's been doing this song and dance for a while and learn from them and see that they have done their due diligence or that they are curious about how to improve vision and all different aspects.

Joy:

Absolutely. So is there anything else that you'd like to add that we haven't touched on yet?

Alexander:

I mean, I think that I love that we're having this conversation. I more recently put myself on social media with the help of some social media people to help facilitate more of these types of conversations. So I'm happy to get into it with people or to educate or answer questions they may have, if they want to find me on there.

Joy:

Well, thank you very much for taking the time today. Appreciate it.

Alexander:

Thanks.