I Thought It Wasn’t Respectable to Be Blind

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Recently I caught up with blind activist Stacy Cervenka* who added a lot to my understanding of the profound need for more, and deeper, cross-disability-community work to combat ableism, internalized and otherwise. We also discussed the need for greater disability-culture competency within the disability community itself, in order to foster genuine and meaningful inclusion. 

“K” is Kari; “S” is Stacy

– Kari Turner

K: Is there a way that you can complete the title phrase, “I thought I was just…” for yourself?

S: I thought about that and I don’t have a lot other than maybe saying, I thought that my blindness was something that someone would have to love me in spite of, instead of just loving me as a whole person, and my blindness is included in the person that I am.

K: I have a similar experience related to my own disability but I didn’t think about that with reference to this column. That’s very interesting.

What aspects of your disability frustrate you the most?

S: I think the part of my disability that frustrates me the most is not being able to drive, because we live in a society where it’s assumed that every adult has a car. This wasn’t such a big deal when I lived in large cities; I spent my twenties living in Washington, D.C. and there, I would say, many to maybe even most young professionals who lived in the District didn’t necessarily have a car.

You would get on the Metro in the morning and it was absolutely crowded with people wearing suits, heading to Capitol Hill or heading to their jobs. The Metro was the way that a lot of people got by and therefore D.C. is structured around that, where in most places not being able to drive is a huge inconvenience and it does limit things that I would like to do, things that I grew up doing that I can’t necessarily do for my kids. Like having a cross-country road trip, which is a big thing for me. But also my kids are in a lot of activities–hockey, gymnastics, swimming, and ice skating–and I also do ice skating. 

The cost of this is astronomical because I’m paying not only for the actual lessons, but I’m paying for Uber or Lyft there and back. That often quadruples the cost. There’s a sacrifice that my husband and I make because we want our kids to have that, but then we don’t live the same quality of life that other people in our income bracket do because just keeping the kids in all the activities we want them in, is a huge, huge sacrifice.

For example, there was one day camp my son went to that was $200 a week, but then it was $15 to get him there, $15 back home, $15 to pick him up, and then $15 back home. So sixty dollars a day, times five, is $300. So we paid $500 that week, and only $200 of it was for the day camp.

Luckily as we’ve lived in Nebraska more, we have many more friends and neighbors that we can carpool with, so that has helped a great deal, but there are activities we do that we might not have neighbors or classmates who do. So I’m paying $15 dollars to get them there and $15 back, plus $30 on the cost of each lesson. So I feel like not being able to drive is the most frustrating thing about being blind. 

K: What’s one thing you constantly find yourself explaining to other people about your disability, maybe that you wish you didn’t have to?

S: I think sometimes when people find out that I can see a small amount out of my right eye, they then immediately assume that I’m basically near-sighted, or how they are without their glasses. I think once people find out that you are blind with some vision, they overestimate how much vision you actually have.

For example, my husband is totally blind, but he can get around well, so people just assume he can see something. So my husband grills, he walks everywhere, all that stuff, so people assume he must be able to see something, even though he can’t see anything. And then, for me, because I can see some–like people will often ask me, “You can see something, right?”–and when I tell them I can see a little out of my right eye, they assume, “Oh, then that’s why you’re independent.” 

But then I tell them, no, it’s a small amount, and it’s not sight the way that you have it. It’s not an “Oh, I’m not wearing my contacts” kind of situation. 

So I think it’s the idea that you have to have sight in order to be independent and to do things like grill and cook and take care of your kids. Because my husband has none, and he struggles a lot less with many things than I do. So people will think my husband has some sight where he has none, and they’ll assume I have more sight than I do. They say, “Well, you’re so independent, you do all these things. You must be able to see some!” But that’s not why. It’s because of the skills that I’ve learned.

K: I find there’s a corresponding set of assumptions that people make about other people’s mobility, that if–well, they wouldn’t pose the question, “How much can you move?” but when they see someone with a mobility aid, any type of mobility aid, they assume you can’t do anything. 

But someone like me, when I’m sitting down, I can pass–that icky thing that we all hate, passing–but then I get up and start moving around and it freaks people out: “Are you okay? Why don’t you have a cane?” 

And I want to say, “Could you please just let me do what I need to do? I’d have to relearn how to walk if I used a mobility aid, which I may want to do in the future, but for now–if I need help I’ll ask for it. Thank you.”

There’s no correlation…My husband uses a cane, but he can ride a bicycle. I don’t use any mobility aid, but I can’t ride a bicycle. There’s no correspondence between ability and disability in that way. It’s not a dichotomy.

S: Exactly, and I think with blindness they associate sight with independence and competence. But my husband is completely blind and he’s comfortable grilling; I’m totally not! He has no problem going to unfamiliar places. I do it, but it stresses me out, where he wouldn’t think twice about it. 

People equate sight with independence and competence, when it’s really not that. It’s having the skills you need.

K: Are there any accommodations you are ever embarrassed to ask for?

S: When people know I’m blind, there’s really nothing I’m embarrassed to ask for, but the problem is, like you said, when I’m sitting down or in a situation where I don’t have my cane right with me–or when I figure skate and I’m on the ice with a new coach or anywhere anyone doesn’t necessarily know, it can be hard.

When I was a child, people would always ask me, “What’s wrong with your eyes? What’s wrong with your eyes? Why do they move?” And it hurt my feelings so much; I was so ashamed of it. But now that I’m super comfortable with my blindness, everyone is like, “You don’t look blind!” And I’m like, “Man, where were you when I was like 12?” 

When I wasn’t comfortable with my blindness, everyone was asking, “What’s wrong with your eyes?” And now that I am comfortable with it, all I get is, “You don’t look blind.” And I’m like, “I don’t know, what do blind people look like? What do you want?”

But when I’m in a situation where people don’t know I’m blind–maybe sitting in a restaurant with a group of friends and a new friend joins, or when I’m in a meeting, or on the ice–and then I have to ask for [an accommodation], then I can feel that internalized ableism and that shame. That ableism against myself.

But I don’t think I should have to pass. I think of myself as self-confident, disabled and proud, the whole thing, but at the same point, when I am in a situation where I’m passing, I then find myself embarrassed to disclose. It’s being ableist against myself. I know better, intellectually, but sometimes when I am in a situation where I am passing, I think, “God, that was fun. That was so nice!”

K; Yeah, sometimes you just want to get through whatever part of your day you’re in without getting put on the spot about something.

S: Right, but look: I worked for a national blindness organization. I was a registered lobbyist on Capitol Hill on behalf of large blindness organizations. I mean, I am a blind activist, and I’m not ashamed to ask for accommodations, but I feel like when I’m passing, then it’s like, “Aw, shit!”

K: So let’s flip that a second…Can you tell me about a time you had your disability accommodated or recognized in a way that pleasantly surprised or at least relieved you?

S: I think when I moved to Lincoln and started figure skating again on my adult figure skating team, I was so worried that, when people found out I couldn’t see, they’d think it wasn’t safe, or they wouldn’t want me there, or they’d have really low expectations. But my coach, Iryna, who’s from the Ukraine, didn’t give a shit, and she pushes me very hard. Even sometimes to the point where, even if it’s legit, when we’ve been spinning for a while,  I’ll be like, “Iryna, I’m so dizzy!”

I mean, because of the way my eyes don’t focus, I get dizzy, anyway. So when we practice spins again and again and again, I get dizzy faster than an average person. But I really appreciate that she’s really tough on me. I mean, she’s your quintessential Eastern European figure skating coach. She’s not there to make you feel good, and I like that, personally, because if I want someone to make me feel good and special, I have my husband. I have my kids. I have my friends. I’m not there for Iryna to be nice to me. I’m there with her because I want to be a better ice skater.

So I really appreciate that Iryna is extremely tough on me. She always finds a way. I’ve competed several times, been part of different compulsory teams, group classes, private lessons, the whole thing, and she’s never made me feel like I shouldn’t partake in the sport part of it because I’m blind. 

But I did worry about disclosing to Iryna, like I thought, “Okay, she’s from Ukraine. It’s a different culture and maybe she’ll be like, ‘No.’” Sometimes when you meet people from different countries there are different attitudes–some good, some bad. Every country, every culture has its own things when it comes to disability. Obviously in the U.S we’re a mixed bag, too. But she’s been really tough on me and didn’t give a shit. The nicest thing she has ever said to me is, ‘Not bad!’ That, from Iryna, is a big deal. 

But I think even she has times where she doesn’t get how much I can’t see. There are times when she gets it and then there are other times when, I don’t know if she forgets or whatever, but she’ll be like, “Look, it’s like this,” and she’ll do the movement. I’ll have to say, “I have no idea what you just did! Where are your hands? Where’s your feet? Where’s your head?” 

But overall it’s been very pleasantly surprising because I showed up for that first class so afraid that they weren’t going to want me there. So I am shocked that I’ve now not only passed out of the group learn-to-skate lessons, but also done three competitions, and I never thought I would compete in figure skating as a forty-one-year-old adult. That never crossed my mind.

K: One of your competitions was relatively recently, wasn’t it? 

S: In July. I mean, we’re a bunch of moms, mainly. You know, it’s for fun. It’s kind of like adult-league softball. None of us are planning on going to the Olympics. We’re in an adult figure skating system and we’re all doing it in between our kids’ activities or whatever. It’s assumed that we all have jobs and other responsibilities. Our goals are all personal goals. Whatever level I’m in, I want to pass that level. Right now I’m working on Salchows and toe loops; my goal is to learn Salchows and toe loops! So when that happens, I will make a new goal. It’s not some huge thing, like I don’t want to be the adult national figure skating champion or whatever!

K: What aspect of your disability do you wish you had understood better or at least earlier in your life?

S: That it is respectable to be blind. That it’s respectable to have a disability and that disability and blindness are just normal facets of the human experience. There have always been people with disabilities. There have always been people who are blind. There always will be. There are disabled people and blind people in every culture and there’s no shame in blindness or disability. It’s absolutely respectable to have a disability. It’s a natural part of the human experience. 

K: What’s one thing you wish more disabled people understood about blindness?

S: You know, it’s funny that you ask that because in the blind community, amongst ourselves, we often feel misunderstood and marginalized by the disability community. And we sometimes feel like, when we go to cross-disability things, we’re not accommodated. Or our issues are not included in broader cross-disability agendas. For example, when you go to cross-disability events, they’ll have an ASL interpreter, they’ll have Braille, but then you think, “Man, it would be so nice if they could just have somebody standing behind the buffet describing what each thing is, or helping you to your table if you have a guide dog.” I mean, not a personal assistant, but somebody just standing behind the buffet would be so helpful to people who are blind–and, I think, helpful to a lot of people!

There are things like that in the cross-disability community where there’s the thought that: Okay, it needs to be in a wheelchair accessible room, we need to have CART transcription, we need to have an ASL interpreter, we should have–possibly, if you’re lucky–large print and Braille.

I went to a NCIL (National Council on Independent Living) convention, and they didn’t have Braille agendas. But all they could say was, “Oh, we’re so sorry! They got lost in the mail.” They didn’t plan far enough in advance to have that accommodation and it was like blind people were just supposed to say, “Oh, it’s okay!” 

I used to work for the California Department of Rehabilitation, and we were going to do an event with the California Foundation for Independent Living Centers (CFILC.) We told them that part of the activity they were planning wouldn’t be accessible to blind and low-vision people, but they were like, “Well, we can just have people help them.” And we had to say, “That’s not acceptable. That’s not acceptable!” I won’t name names, but I need to mention this because it was so disappointing, as a disability rights advocate. 

We were trying to tell them that the inaccessibility was not okay, and their response was, “Well, we can just put people with them.” And so–okay, are you going to then ask people to carry people in wheelchairs up the stairs? That’s not access!

In the blind community, we have, to an extent, some level of discomfort with the cross-disability community. Hopefully some of that’s changing, but part of it is that feeling that, okay, it’s enough to have Braille and a large print thing. No one ever really thinks about what accessibility to blind people means. Issues that affect blind and low-vision people are not necessarily put on the forefront.

Most things seem to be for people who either have autism or mobility disabilities. I mean, they should focus on those; they’re super important. But, and I think Deaf people feel this way to a certain extent, too, cross-disability often means mobility disabilities and autism. It doesn’t always mean brain injuries. It doesn’t mean real mental illness–significant, persistent mental illnesses (SPMIs)–at the table. So “cross-disability” is–I don’t want to call it a buzzword, but–almost always used to mean only the physical disability and autism community. 

That’s how a lot of blind people feel, whether it’s right or not. As an example, right now, there is a sexual abuse scandal ripping through the blind community and we don’t feel like we’re getting much help from the cross-disability community. 

K: I’ve been in meetings and events where I’ve seen the kind of thing you’re talking about play out. And that’s many years ago by now. This whole idea that help is sufficient? No, it isn’t.

S: No, it’s not the same. I’ve been in cross-disability community events with people who use augmentative and alternative communication (AAC), and they would say something but not be given enough time to get their message across. Or a person with a speech impairment would be speaking and everyone would just pretend to understand them, not really understanding or valuing what that person had to say. Just like, “Okay, yeah…next!”

But that’s not cool because, even though I get that you’re trying not to make this person feel embarrassed, what they really want is for you to understand what they’re trying to tell you! If you really want to hear their perspective, you need to be culturally competent. I think there’s a lot of people in the cross-disability community who don’t think about how to include people in a real, non-tokenistic way. This includes people with SPMIs.

One thing that people with mental illnesses have, is mental illnesses! And sometimes it’s the symptoms that get people uninvited or not taken seriously, so it’s like, the cross-disability community doesn’t always think deeply about how, for example, this person is Deaf, therefore they can’t hear; this person has CP, therefore they can’t walk; this person has schizophrenia, therefore they may be acting in a way that you aren’t used to. I think the cross-disability community doesn’t always think deeply about the need for cultural competence in all these areas.

K: I have seen a lot of disability community concepts get misused so that people are at loggerheads for getting accommodated one way or the other. People will be like, “Oh, I just don’t have the spoons,” or something like that. I mean, that’s valid in terms of how you feel, but you’re not allowed to make excuses for not including or not accommodating other people. 

S: Yeah, and it’s hard because the disability community is so big and so varied. Even some of the issues that affect us or things that help all of us are sometimes different. I’m totally for inclusion in the classroom. I think kids should be included in every way possible. However, as blind students, we’re going to need pullout services, because we need to learn Braille. The whole class doesn’t need to learn Braille. Maybe it’s nice for the class to learn the letters, but learning to read Braille is like learning to read print; you need to do it a lot. It’s not just learning letters, it’s learning literacy. So we advocate for blind kids to get pulled out an hour a day for Braille while they’re learning to read. It’s not because we want something separate; it’s because their whole kindergarten class is not going to spend an hour a day learning Braille! 

K: You need different skills, because you have a different disability situation. 

S: Exactly! Same with orientation and mobility [O&M]–learning to get around independently, learning how to get around your school and carry a tray to your table in the cafeteria, learning how to cross streets or navigate stores, train stations, subways or whatever. Your entire class doesn’t need to do that necessarily and these require one-on-one teaching. I feel like in the cross-disability community there’s so much emphasis on everyone being in the classroom, no pullout services. And I agree with that for many disabilities, but for blind people: We need to learn Braille, we need to learn how to get around independently. Those are skills that are not taught in the classroom, and they won’t be, not on a one-on-one level. 

Sometimes, blind kids simply can’t get pullout services due to a lack of teachers who can read and teach Braille well or a lack of orientation and mobility instructors in their area. So we have a lot of summer programs for blind kids. And that’s the only time they’ll get taught Braille or O&M or adaptive technology or how to cook and perform daily living skills as a blind person. The cross-disability community may say, “Well, that’s not inclusion; they shouldn’t be going to segregated programs!” But we say, “The kid is included all year, but if their school isn’t providing them Braille, they won’t learn to read, so then the only time they’ll get to learn Braille is during the summer. This is unfortunate, but the alternative to blindness-specific summer programs is kids not learning to read or kids not learning to get around independently.

K: People have to be included in a way that increases their own and everybody else’s competency.  

So: Where do you perceive opportunities for the blind community and broader disability community to come together? Or, where do you sense the need for greater distinctions between communities so we can face ableism–especially lateral ableism–together?

S: I think the cross-disability community needs to understand how vast and diverse the disability community is, especially regarding the accommodations we need. They need to become more culturally competent with disabilities other than physical disabilities, and to become better acquainted with how to truly and meaningfully include people with sensory disabilities, mental health conditions, speech and language disabilities. 

Stacy Cervenka has worked for 15 years as a public policy advisor and analyst for several elected officials, government agencies, and national non-profit organizations. She currently lives in Lincoln, Nebraska with her husband Greg DeWall and their children Leo and Josephine.

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