Blinclusivity

Blinclusivity explores the disability angle of everyday public health issues and the often unaddressed ways that policy issues impact people with disabilities.

Blinclusivity - Episode 5 - Transcript 07/21/2018

Blinclusivity - Episode 5 - Transcript Episode 5 - The Other Side of the Desk [Start of recorded material at 00:00] Rachel Tanenhaus: Welcome to Blinclusivity, a glimpse of disability in public health and policy. I'm your host, Rachel, and on this episode, I interview Adam Estapa, an optician who identifies as legally blind. Disclaimer: Neither this podcast nor I represent the views, messages, or opinions of any other entity; just my own. Please do not blame my employer, my family (chosen or biological), my dog, or anyone else for any statements I might make on this podcast. Guests represent their own views. I am also committed to inclusion and intersectionality and will do everything in my power to center those concepts on this podcast. I am, however, a person with a bunch of privilege, and the capacity to make some pretty hefty mistakes, so I may mess up. I do not expect anyone to do the work of educating me, but please know that if someone is kind enough to call me out, I'll do my best to accept their feedback and admit to and learn from my mistakes. Thanks in advance for your patience. Now normally, one thinks of folks who are blind or have low vision as going to the optician, and the optician as being the sighted one. What happens when somebody is on the other side of that desk, when somebody actually has a job in the profession that is supposed to be serving him? How does that work? And do people take you seriously? And what does that say about how we view people with disabilities in general? Adam is kind enough to talk to us about this, and so I am really excited that he is our first guest on the show. I hope that you will enjoy this interview. I had a great time interviewing him. He is also very open to questions, so he lets folks know how to contact him, and you can always contact me here at [email protected]. I can pass questions along to him as well. So let's take a listen. -- Let's get started. First of all, thank you very, very much for being on Blinclusivity. I'm so excited. So can you introduce yourself, first of all. Adam Estapa: Well, thank you for having me on tonight. My name is Adam Estapa. And I am definitely proud to say that I am a legally blind optician here in Massachusetts. Rachel Tanenhaus: That's sort of a rare thing, isn't it? There are not a lot of legally blind opticians; is that a fair assessment? Adam Estapa: Yeah, I would say that it's probably like a condor. There's like three of us; not very many. Rachel Tanenhaus: How long have you been an optician, and what goes into the training for that? Because I know nothing. I've been showing up and getting glasses since I was two years old. I show up, and they magically make the glasses happen. And then I say, "Thank you." Sometimes I give them money; sometimes somebody else gives them money, and then I go away. Adam Estapa: Okay then. Well this is going to be sort of a two-part of this story. For the first half, I was born with a visual impairment. I have macular dystrophy. So with that, what most patients know, I have partial color blindness. My periphery is super strong, but my central vision is not necessarily the best. Certain things I can see close-up; far away unless it's big and bold. My mother, with raising five of us, which is bravo in and of itself, she decided like anybody else, "I'm going to go back to work now. I'm done raising all the kids." And she ended up getting a job first as just a -- they called it a secretary then; a receptionist. They used that, but now it's administrative assistant, but then it was called a secretary. It was the Reagan 80s, so that’s how things went, at a place called Harris Opticians in my hometown of Bexley, Ohio. And she worked there for a while, and at a point, she noticed opticianry. She was like, "This is really amazing." So she went to the owner, his name was Gil Harris -- unfortunately, he passed away a couple weeks ago; he was a good man -- and she was like, "Yo, can you teach me this, this opticianry?" And he was like, "Absolutely." And so she apprenticed with him, and she became an optician, essentially, you could say because of me, not to take credit. And so my mom, I think it was 1986, she started to go with opticianry. And so, being in a small town in Ohio, the optical shop/doctor's office was located like a block from the elementary school that I went to. So I would, of course, always want to see my mom after work. And it wasn’t until about 1995 where, as any other high schooler, you needed a job. I wasn’t necessarily fully employed with them, but I would always go in on the weekends and help out. And I was always curious with the machines, curious with the technology, asking Gil a thousand questions, asking my mom a thousand questions. And so between 1995 and 2005, that ten years, I would go in and out and always hang out with my mom and see what the newest technology was, and say, "Oh, what are we doing today? What new lenses do we have? What new frames are available?" And so it was through that constant dipping your -- I wouldn't say toes, but whole feet into the water of the optical industry, it was always a part of me. But I was always able to understand. But it seemed that there was never really a disabled person working in it. And now we come to part two, which is more my mainstream with opticianry. This was actually a funny story. Forever, my mom was my optician. She would get me the glasses and fit me with my prescription. And I'm very lucky to say, I'm very fortunate that my prescription has not changed in my 37 years on this earth. It's still the same prescription since birth. Rachel Tanenhaus: That is amazing to me. That just blows my mind. My vision loss is not progressive. It is stable, but I also have all the usual things that people have like astigmatism. So that does change. The idea of having the same prescription forever is, that is a superpower. Adam Estapa: That is pretty amazing. It's also the amazement of the ophthalmologist and the optometrists who were able to ask you the right questions. As someone with a disability, we need to be a little bit more fine-tuned. Kudos to the optometrists who decide to become low-vision specialists. And so back to my main story here. My mom sends in new glasses for me to check out, why not? It's just like when someone says, "Oh, I bought you some new pants or sweaters to try on." It's like, "Oh, mom." My mom was pretty good at the style of glasses, I'll say that. And she brings them in, and I'm like, "Oh man, I've got to go get these adjusted." Well, the endless, boundless knowledge of my wife, Rachel, who -- she literally said it this way: Adam, you can't always go to your mommy for your glasses. Strong point, because we're now married in our early 30s, so that was a good point. So therefore, I go like anybody else to my local optical shop to get these glasses fitted. The prescription is already in them. And I go in, walk through the door, and I think right off the bat, no one says, "Hello," or, "Welcome." That obviously is not a good sign from the beginning, so obviously, that's not too good. The optician comes up and states, "What can I do for you?" And I was like, "Can you please adjust these glasses for me? I know I didn’t get them from here, but they're just not fitting well." And I put them on, and he flat out says in a very "clearly I'm wasting his time" voice, "Well, they look just fine to me." And it's like, "You're not the one wearing it." And two, I'm like, "Take a closer look." And sure enough, when I had to go somewhere else, they were like, "Yeah, this clearly didn’t fit." But at the very beginning, he couldn't care less of how it fit for someone. I even mention that I'm legally blind, and he still didn't care. He was like, "Yeah, sure." And I needed sunglasses. So he made clip-ons for me. And at this point, he said, "You know, can we make them darker? I'm photosensitive with my disability?" Even though I know for a fact, I have worked with labs that do it, he was like, "No, they can only go so dark, so much." I'm telling him all my reasons. At the time, I'm not being mean back; I'm just saying my medical condition. And he's like, "Yep, um-hmm, yep." And he's not looking at me. He's just typing this order in on the computer. Rachel Tanenhaus: Right. Team photosensitivity right here. If I could go around with a bag on my head, I would totally do it. But that is apparently frowned upon in most social circles. Adam Estapa: And too, you're right. With the sunglasses, my mother would in fact go to the lab and say, "Okay, this is a special patient. He's my son. He need to add a coating of tint on top of the polarization layer." Polarization eliminates the glare. So labs can do it; it may be an extra process, but they'll do it. It's just like a custom body shop, or anything. If you ask them, they will do it. But of course, this shop is like, "Yeah, no, I just don't really want to do it." Rachel Tanenhaus: Yeah, and I think a lot of health care providers -- and I feel like opticians are health care providers in a sense. I think a lot of health care providers forget that it is also a customer service industry. Adam Estapa: No, I completely agree and that is very true. I think that a lot of optical shops have lost their way. A lot of them, they do good; it's part of our capitalist society. There is nothing wrong with it, where they go -- but it's just that I feel that we've gotten off track. We've gotten to a point where it's become more retail rather than medical. And it was later that day that I'm just going for a walk to the grocery store and I'm just so frustrated. I'm like, "I would never have done that to a patient. My mother would have never done that. You know what? I'm going back to school. I'm going to be an optician. That's it. I've had it." And so me and my wife go and look up, and there is a great opticianry, the Benjamin Franklin Institute of Technology; the head professor there, Blair Wong, who himself is visually impaired, and that just blew my mind right there. And I go to school, tell them I'm legally blind and want to be an optician, and they're like, "Yeah, come on in. Have a sit-down. Let's learn." It wasn't, "What are you doing here?" It was, "Let's sit, let's learn. Let's get this guy a degree and show him to the world, because he's going to do spectacular things like the rest of the students here." And this was 2013. And in 2015, I graduated with my degree. And I am ABOC certified and NCLE certified. ABO stands for American Board of Opticianry. You have to take a test for it. You have to study for it, just like any other medical profession, so that means you know what you're doing. And the other is called National Contact Lens Examination certified; I took it, passed it. You have to know all the things of how you're going to help these patients if there's an accident. How do you do certain base curves; index of refraction; Abbe value -- all these fancy medical terms -- Rachel Tanenhaus: Physics is awesome. Adam Estapa: Physics is awesome, and light rays are awesome -- to figure all this out. That's where I'm, getting back to my point -- a lot of retail places, again, it's just about selling the frame. The frame is nothing more than a vessel that carries the prescription. The frame can be awesome, that's true. It can feel good. There's nothing wrong with that. It suits our personalities. But what matters to me is the lenses. The lenses are what helps us live. It helps us go around and live. Rachel Tanenhaus: It makes us go. Adam Estapa: Exactly. Lenses make us go. Rachel Tanenhaus: I guess for me, one of the really interesting things about this story is the reception that you got when you went to school. For me, my background is I'm a public health professional, and I went to public health school and got my degree. And there's still very much this idea of people with disabilities as being an outcome rather than a population. There aren’t that many people with disabilities working in public health. One of the reasons for that is that it's really hard to sit in a classroom all day and hear about people trying to prevent you. I got out of grad school in 1999, but when I went to grad school, you never heard the word "disability" without the word "prevention" after it in public health. And it was kind of an awkward thing. Interventions did not have a lot in them about being accessible or about serving people with disabilities. "People with disabilities" were what happened when you did it wrong. And so for me it's really interesting hearing that you went to the school, and they were like, "Yeah, let's do this," because they didn’t see you as the consumer or the product or any of those things. It was a matter of -- and I feel like that's really important. I believe very strongly in the mantra or the motto of, "Nothing about us without us," and I think that in order to serve a population, you have to have folks from that population represented there. So I think that that is really an important thing. I recognize that it helped that the person in charge of the program also had low vision, but do you ever encounter anything in the field where they're a little surprised to see you on that side of the desk? Adam Estapa: Absolutely. Unfortunately, the answer is yes. And this is where things actually start to get very interesting. Just like any job, when you first get out after graduation or during school, regardless of field, you're going to hit a lot of professional turbulence, regardless of your practice. I worked at many optical shops in the two years I was at school. It made my résumé look very choppy. When I would interview, they asked me that, and I flat out would say, "I’m legally blind." And they saw that as a liability, not an asset. And that was very disheartening because always remember this: all humans make mistakes. It happens. It's like, "Oops, I forgot to staple those papers together when I put it in for the boss for that project." But when a visual impairment person makes a mistake, the person assumes, "You made that mistake because you're legally blind. Therefore, because you're legally blind, you're going to keep making mistakes. You're not going to learn." Which is not true. Rachel Tanenhaus: I think that happens with a lot of marginalized communities. I think that when people presume -- when someone inadvertently does something that happens to feed into the stereotype; when they were expecting you to be Mr. Magoo, and then you make a mistake, then they're like, "Look, dude is Mr. Magoo. I have data of one thing." And I think that that happens a lot, something analogous happens with people of color. I think it happens with people with disabilities all the time. I think it happens with folks who don’t fit into traditionally acceptable relationship molds. For a long time, and probably still, the LGB community, such as it is, every time a same-sex relationship broke up, they were like, "Yeah, well, they can't keep it together." Or whatever happens with poly folks all the time: if a polyamorous relationship ends, they're like, "Yeah, well, that stuff never works," rather than -- but nobody says it about what's considered the mainstream or the default. So I feel like that's something that people with disabilities come up against when we go into the job market that makes it that much harder; that is, if you showed up -- how many sighted people do we know that went to work one day with the wrong shoe on? Every professional has one story in their life where they put on the wrong color shoe or the wrong sock or something like that. But when we do it, it's because we were blind, right? Adam Estapa: Oh, absolutely. That is definitely correct. It's kind of like -- there was already a mark against us when we already came in. In the medical professional side, I have had fellow opticians tell me, no joke, "Oh, you need to see to work in this business." I started crying, I won't lie. I cried, and I had to excuse myself. And that hurt. The point was that that's just not fair. However, the general public saw that as amazing. And they would always say this, "Oh, so you know how to help people? You understand them?" And then it's like, "Oh my god. This is someone who's just coming in needing glasses, and they get it. The general public gets it, but the medical side doesn't get it. Rachel Tanenhaus: I think that's a thing. They call it the medical model of disability for a reason. We are often viewed as a problem, or as "the" problem. We're trying to fix you in this room; what are you doing here? I have had people come up to me on the job and say -- when I need x, y, and z to be accessible -- they say, "Well we didn’t make that accessible because it was for professionals only." And I like my job very much, but not so much as I would do it for free. I am not a volunteer. I am a professional. There is this presumption that you stay on your side of -- we have to be in the position of being helped. We cannot be the person doing the helping, right? That is so frustrating to have heard that. Adam Estapa: I've always been told, and I believe this myself, that we as humans generally get uncomfortable when we're around things we don’t understand. So we're left with two options when we don’t understand: we either attack it, or we embrace it fully; as I tell people I work with, "You have to trust me." I trust me, I know what I'm doing. Both brain and brawn, I know what I'm doing. And having found a place right now where they were like, "Your disability is an asset. It's not a liability." This is the CEO who said this. He is an amazing person who said this, over at Boston Laser. This guy was incredible, the CEO; as well as the doctors. It's like there were finally a group of individuals who get it, who have seen it, and they were like, "This gentleman can help patients." Rachel Tanenhaus: And that’s the thing. I think that one of the things that we need in the world of healthcare, and in the world of retail as well, is empathy. But when you work next to somebody who has the disabilities of the people you're serving every day, then they are a whole person. You are much more likely to see them as a whole person. And I think it makes a huge difference that you went somewhere that recognized that; that you went to school somewhere that recognized that from the beginning and that you are in fact working somewhere that recognizes that. Blind people are one of the least employed groups of people in this country, for sure. Adam Estapa: Absolutely. Rachel Tanenhaus: And that has not changed with the advent of the ADA. Can you talk a little bit about your experiences in school, and working with somebody who was already in the field who had similar experiences to yours and got it, knowing from the beginning that someone was always going to get it? Adam Estapa: It feels as if a couple of tons has been lifted off of your head, as well as your chest. You can skip the BS and get to work, and it feels absolutely amazing to know that it's like, okay, all of this anxiety and drama of a disability has now been taken out of the equation. You can actually focus on seeing that your mathematical calculations are correct. What posture do we need to help the patient to be in order to see the progressive lenses correctly? What tint of... /episode/index/show/blinclusivity/id/6835890

Blinclusivity - Episode 5 07/21/2018

Blinclusivity - Episode 4 - Transcript 04/06/2018

Blinclusivity - Episode 4 04/06/2018

Blinclusivity - Episode 3 11/03/2017

Blinclusivity: Episode 2 10/12/2017

Introductory Episode 09/25/2017

Blinclusivity

TOPICS