K: Regarding “I thought I was just…” Can you pick a word to complete this phrase that describes how you had thought about yourself before you reached your concept or understanding of internalized ableism?
M: I don’t know if I can necessarily relate to that sentence, but I think I have and probably still am always trying to overdo things…to prove other people wrong, and sometimes myself wrong as well, just because of the societal narrative around what a disabled person can do or not do.
I think to other people it looks like I’m accomplishing one thing after another, and it’s fun, too. Like, coming to Turkey is really fun, but in a way, also, it’s like I have to prove to myself, as someone who doesn’t speak the language, that I can adjust to a foreign country by myself. It’s also proving to others that someone like me can go somewhere new and succeed. So it’s not so much like, “I thought I was [blank],” but more like I’m always trying to prove to myself and others that I’m the opposite of what we [disabled people] are expected to be.
K: Yeah, we may not put it in the same terms but I definitely relate to what you’re saying in my own life, too: That feeling of always having to do as much as possible, all the time!
M: It’s like overcompensating, too, right?
K: Oh, yeah! So: What aspects of your disability frustrate you the most?
M: Sometimes I think something could be done so efficiently if I were sighted. For example, I was building a slide deck for one of my classes, and I think trying to select pictures, dragging and dropping them, things like that would be so much easier and go so much more quickly for a sighted person. Even just learning places. Like, here I know I’m super close to the tram station, or a particular store that I’m looking for, but I can’t see the sign, so it’s a matter of efficiency for me and also how much the world is built having sight as a default sense that everybody should have. So, I think it’s a combination of both, that things could be more efficient, but also why can’t people think about the fact that some people can’t read signs or use certain technology as well as others?
K: Another person I interviewed brought up the point that not even many other disabled people think about what accessibility for blind people really means.
M: I think humans in general have poor abilities to think about something that we don’t experience ourselves.
K: It takes a level of empathy that is aspirational for most of us, one way or the other.
M: I agree.
K: What’s one thing you constantly find yourself explaining to others about your disability, maybe that you wish you didn’t have to?
M: It’s really interesting, in such a heavily virtual world. It’s both a good and a bad thing. Sometimes I think people don’t realize that I’m blind because it’s hard to tell by the camera. So for example, at my previous job, I was managing webinars, and we had new guests every month.
Professionally, you can look me up and it’s pretty obvious that I’m a blind person. But one woman asked me, after one of the webinars that we did, “Did I look good?” and I was like, “Um…I don’t know if you realize this but I can’t answer your question! You have to ask my other colleagues, because I couldn’t see you.” And I think sometimes people don’t believe that, perhaps because they think, “Well, how on Earth is this person doing this job?”
This whole virtual world has presented this interesting dynamic of: Usually my disability is very visible, but now it’s kind of invisible, and some people can’t seem to believe that I’m doing this and that without being able to see. Another kind of funny thing is that people seem to think that I’m unable to go up and down stairs or anything like that, but if you think about it, right, my legs work just fine; it’s just that I can’t see that there are stairs. But even then, I have a cane, which can help me when the stairs are there. So people just make very interesting assumptions about what can be done and what cannot be done without sight.
And now that I’m thinking about it, people will often also ask, “Do you have a better sense of hearing?” which is not necessarily a better sense of hearing, but rather heightened sense of hearing, meaning that perhaps I pay more attention to auditory things than a sighted person might. So there are many questions that the general public have.
K: Confronting those kinds of questions on a regular basis, I also find that a lot of people aren’t willing to confront the assumptions that they have. Like they get stuck on, “You can do that? That’s unbelievable! How do you do that?” But then they aren’t willing to suspend their disbelief and listen to your answer. They aren’t willing to confront something in turn that defies their own assumptions or expectations of what a disabled person can do.
M: Yeah, I think that’s quite hysterical, actually!
K: Talking about positive and negative stereotypes, it’s kind of another angle on the whole dehumanization thing, like, “Are you saying, then, that I’m not real?”
M: Yes, the “supercrip” narrative is actually very harmful.
K: It very much relates to what you were saying about constantly having to prove yourself.
Are there any accommodations you are ever embarrassed to ask for?
M: Not necessarily embarrassed, but for example if I’m getting textbooks or something like that in advance, I feel like I have to have that conversation really early and keep reminding people and insisting on it. I find that part more annoying than the actual asking.
Or sometimes, like in my living situation, if we have to label everything in the apartment, then I feel like I’m causing an inconvenience. But it’s more like being concerned than embarrassed.
K: Do you have a roommate where you’re living now?
M: Yeah, actually I do. And I mean, you’ve lived with non-disabled people, I assume. The issue of access intimacy…to some people it comes really easily, and to some people it doesn’t. I think it’s really interesting, when access intimacy gets formed and when it doesn’t. There’s a part of it that feels out of my control.
K: What part of access intimacy feels out of your control?
M: I think access intimacy can be out of [one’s] control because the extent to which the other person “gets” my access needs and how they approach it differs from person to person. I think some of this can be learned and developed over time but not always. Some people, even without having met a blind person before me, just seem to get it, while others who may have known me for a long time and care about me–for example, my extended family– may never get it.
Mia Mingus’ Access Intimacy: The Missing Link does a much, much better job at articulating on this concept [than I do].
K: On the flip side, the more positive side, can you tell me about a time you have been accommodated or otherwise had your disability recognized or considered in a way that pleasantly surprised (or at least relieved) you?
M: I think there are many ways that friends of mine just get it, like putting image descriptions on their social media posts. In my previous job there was a screen share but I didn’t have the document, and one of my colleagues just emailed me the document and said, “Hey, this is what we’re looking at now.” I didn’t really have to ask her to do that, but she knew that I couldn’t see what was on the screen, so she knew to do that without me asking. And I think when things like that happen, that’s the access intimacy, actually, because, you know, people just get it. They know what you need and how to help without being overbearing, right?
M: During the pandemic, like a lot of people, I started ordering groceries online, but I love Trader Joe’s and Trader Joe’s is one store that doesn’t do delivery. So I was talking about it with that same colleague, and then whenever she went there she would text me, “Hey, I’m stopping by Trader Joe’s, can I pick up something for you?”
So there are a few people now and then who really get it!
K: That’s cool. Such a nice sort of daily-life thing.
What aspect of your disability do you wish you had understood better, or at least earlier in your life?
M: I think it’s more like embracing it, right? I don’t think my parents ever said, “Oh, you can’t do something because you’re blind,” but they were more on the supercrip side than on the “deficit” side. You also have to realize that they’re stereotypical Asian people and Asian immigrants, and I had to learn that sometimes it is okay to feel like, “Okay, it’s actually really hard to live in this world that’s not made for me,” and to own that I can only do so much and that it’s okay to feel now and then like I don’t really like having my disability. That wasn’t really taught to me. I had to learn that.
K: Coming from a different cultural background, I still relate so much to everything you’ve said.
M: I mean, I’m not a parent, right, but I do have siblings who are five and six years younger than I am. A lot of things, I’m able to do, but I have wished, like, “I wish I could give them a ride to their practice,” or whatever. My peers do that for their younger siblings, and for me realizing that it’s okay to have those sentiments and thoughts is important. But we don’t really teach that to kids, actually.
K: I know I went through a period of time, while I was pregnant and then after my first daughter was born, where I was grieving the things that I figured I wouldn’t get to do with her. Even something as simple as braiding her hair, is not really something I can physically do. I mean, she’s not even three yet so I’m not sure she cares, and certainly there are plenty of other things that I can do, but I still went through those feelings and I realized that it was okay for me to feel badly about that while still being glad about everything else I could do for her as a parent. Also, it’s been kind of fun adapting things that I have to do with her as well as discovering things that I can do, that I didn’t think I was going to be able to.
M: Yeah, things like that. Exactly.
K: So, getting into things more specifically related to your own disability: What’s one thing you wish more disabled people understood about blindness?
M: It can be upsetting, in cross-disability functions, when there’s no image description or video description. So I think just considering accessibility from different angles is something I would say.
K: Yes, I’ve been in meetings or events where that kind of upset happens and it’s very difficult but very preventable!
M: Obviously, there are going to be times where different people’s access needs conflict, but if you do a whole presentation picture-based, then blind folks will feel left out. So, I think we need to work harder to find solutions.
K: Solutions and compromises. But also I think there’s value in trying to use the conflict to inform the situation, like how can we make this fit together, instead of leaving it conflicting?
On that note: Where do you perceive more opportunities for the blind community and broader disability community to come together? Or, where do you sense the need for more distinction between communities so we can face ableism–especially lateral ableism–together?
M: Before coming to Turkey I used to work for a think tank research company that did a lot of work surveying folks with I/DD [Intellectual and Developmental Disabilities] or coordinating services and helping state governments do better at providing person-centered services mostly on the developmental or intellectual disability side. So, I learned a lot about other disability communities’ issues.
For example, I didn’t even know what community-based services were until I worked at that job, even though I’ve been disabled all my life. I learned those things because I kind of randomly got this job, and I’m really thankful I did, but I wish there were more opportunities to learn about other disabled communities’ needs and experiences. Obviously there are common issues; getting better healthcare and ending subminimum wage are issues everyone–meaning activists in different parts of the disability community–is trying to resolve, so I hope that we can continue to find basic, common causes and really work together.
K: You are the first person I’ve spoken with who has mentioned issues for intellectually disabled folks, and I really appreciate that.
M: I wouldn’t ever say that I’m an expert, but I think working that other job really brought it into my perspective, and I am really glad for it.
K: I’ve had a similar experience to yours, doing disability community work. Even though cerebral palsy is also a developmental disability and I’ve been in situations where I’ve been kind of ‘lumped’ with people with I/DD, and had a lot of opportunities to connect with different people personally, a lot of the real learning about systemic issues took place while I was on the job. What I realize is, I don’t need to be an “expert” in this, I don’t even necessarily want to be an expert in this, but I think that I need to be honest with myself and honest with everyone else about my learning.
K: I need to acknowledge the fact that I have a lot to learn, and be willing to share that learning, without needing to call myself some type of expert or anything. I don’t think that’s what the disability community needs. I think we need less expertise, and more genuine connections. Expertise can be valuable, but when it comes to people’s lived experience, it doesn’t really apply.
M: Yes. I agree.
J: I don’t think I saId anything; I was just so taken aback by it. I didn’t know what to say!
K: Honestly, this reminds me of one time I signed up through my church to do a Thanksgiving dinner event for homeless people in my neighborhood. The event invitation said, “We’ll have two seatings so everyone can have an opportunity to feed the homeless!”
I saw that and paused because it’s so messed up. I know it’s just a matter of framing, but framing directly impacts how people get treated. I decided not to do it because I realized, “This is not about our opportunity to help them; this is about their opportunity to eat! Have as many seatings as it takes so they can eat! Not so we can feel good about ourselves for helping.”
It’s like how some of my mom friends talk about how their [non-disabled] kids “enjoy helping” the disabled kid on the playground. Why can’t they just be friends the way anybody could be? Why does help even have to be a dimension of the relationship?
J: It doesn’t…But if it is it should be out of sheer love and appreciation for that person.
Cool Cats: Voices from the Disability CommunityMeet cool and interesting people from across the disability spectrum in the fun series in which everyone is asked the same set of questions!
Kari Turner is a writer, editor, and disability activist from Los Angeles. Now also a new mom,
she and her husband are raising their family in California’s Coachella Valley. In her spare time, Kari blogs about parenting, disability, spirituality, and faith at http://writingthetao.blogspot.com