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I Thought I Was Just Lazy

I Thought I Was Just Lazy

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This is a continuation of Kari Turners “I Thought I Was Just Stupid” Series that pokes around internalized ableism.

For more of Kari’s work, visit her page on Unpacking Disability,, and consider subscribing (below) so you never miss a post!

Now, from Kari:

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In talking with Black/Boricua, disabled non-binary ballet dancer, Jay Moye (they/them,) I had the opportunity to explore the new-to-me concept of social ableism, in a wide-ranging conversation about help, care, love, intimacy, and the intersection of all those things with disability.

  • J- Jay
  • K- Kari

 

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

J: I thought I was just lazy. I grew up with this idea, and with a lot of gaslighting around the idea, that “other people have it worse.” I had to learn for myself that I wasn’t just lazy or getting one over on people.

I grew up being called lazy because of my fatigue and lack of motivation. Physical therapy can be strenuous, especially when your body can’t do things correctly on the first try. By the 4th or 5th, I’d be exhausted, physically and mentally. People don’t think children can get mentally exhausted and they often can’t articulate beyond saying “I’m tired,” so the assumption is that they are lazy.

I get severe fatigue during my menstrual cycle and it’s definitely a bit of a mind fuck to have people be so understanding about it now. Thankfully, I am comfortable asserting myself and communicating what I will or won’t do during that time. I get lots of rest and make sure to manage my pain as best I can.

K: What aspects of your disability frustrate you the most? 

J: I have always struggled with my bladder issues. When they first started happening I was like, ‘Oh, my god…What the hell is going on here?”

It’s hard, but important, for me to be transparent about how I go, for my health. The third date is always the bathroom! By now I’ve learned to be more upfront with my needs, to gauge the other person’s comfort level, so that I can go on the first encounter if I need to.

It can also be hard to be somewhere–with a friend, on a date, whatever–and have to ask them to cut my food for me. 

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

J: It’s really hard for me to ask for accommodations in any of these areas but then I remember the risks of NOT asking, and it puts things into perspective.

K: Has there ever been a time you were pleasantly surprised to be accommodated easily? 

J: In December 2020 I had a virtual medical appointment for the first time, and the doctor was very upfront with accountability about my pronouns. Also just simply acknowledging me and my needs with no extra fuss: “I see you, I hear you, I believe you.”

Also, when a medical facility has toilet hats available in case I need to give a sample, it’s a huge deal! It makes things SO MUCH EASIER. Not everyone can hold those little cups.

K: Is there anything about your disability that you wish you’d understood better or earlier in your life? 

J: The main thing is that disability is permanent or static.

With cerebral palsy (CP,) that means that while the symptoms can worsen, the brain injury itself does not change. I grew up with this language of improvement around my therapy and surgeries (at ages 4, 11, and 16) but eventually I reached a turning point of “I’m not getting better,” which was really challenging because my entire life had fed the narrative of getting better or being normal.

I internalized other people’s opinions, but now I’m starting to realize what Imani Barbarin says: “The way the world feels about you does not have to be how you feel about yourself.”

I also wish I’d understood that CP can have an emotional effect, through pseudobulbar affect (PBA.) When I was in college the disabled student association had this guest speaker who was a physician with CP. When I heard him speak it was the first time I learned about PBA. I went home and I told my mom about it, and she said, “Yeah, they told me that certain nerves may be linked to certain emotions, but I never told you about it because I didn’t want you to play the disability card all the time.”

Until then I’d grown up just thinking I was oversensitive, or a crybaby, so that now I’ve sort of trained myself to not cry. What I’ve done before is depersonalize a lot, so I’d go through something really traumatic, pushing my way through, look back and then say “I went through that? That was bad!”

But I will also definitely always be the person laughing at the joke like ten minutes later, and I don’t put everything on the PBA, but it’s helpful to know it might in fact be linked to my CP. When you Google “PBA,” cerebral palsy is listed as an associated condition. 

I find that so many people can say the words “cerebral palsy,” but they don’t truly understand what it is, or validate how it affects people. 

K: In conversations leading up to this interview you introduced me to this concept of social ableism, which I think I get viscerally and intuitively, but can you give a definition or examples to distinguish it from ableism in general?

J: I would define social ableism as the way disabled people are treated in any relationship as lesser. At social events we get stuck in a corner; you know, at a party I get treated like someone’s grandma: Greeted, hugged and kissed, offered food, but always with the underlying assumption that I don’t have much going on. So, I don’t get incorporated in a meaningful way. 

That’s compounded by what we do at work–tying worth to productivity. There’s the issue of disability hierarchy and the way people can be cliquish about their diagnosis. Lots of lateral ableism.

Plus there’s this idea that we should just be happy with [any] representation, but [for example] wheelchair representation continues to center a cis white dude in a manual chair. You never see a Black person in a power chair–and you can tell by the way someone drives a chair whether they’re actually disabled or not!

At work or in friendships, disabled people are held to a standard where there’s no room for mistakes. There isn’t any disability visibility and we are offered things differently…People love to say, “I don’t see you as disabled,” but it’s like, seriously? You’re going to negate my needs? They don’t understand that being disabled is a full-time job, and yet people will tell me, “It’s a shame your friends take you for granted. They can learn.” But I’m like, why do they have to learn to treat me fairly and be helped? We aren’t only here to be emotional support for people. What about just having fun?

K: I so hear what you’re saying. If you put yourself out there, you’re seen as forward, but then non-disabled people can do that all day and be just fine. But can you speak now not only to what social ableism is–I think we’ve got that–but also why it’s an important distinction to make?

J: Well, because in most social settings we get infantilized. For example, I can remember being in high school and, as teenagers do, singing along with random song lyrics. Someone started singing “The Thong Song,” so I started singing along with it, too, and people were like, “Wait, what do you know about that?” And I would just say, “What do you mean? We’re the same age, I listen to this kind of music, too. So why you think I wouldn’t understand a song like that is beyond me!” 

There’s this assumption that disabled people are very sheltered and very shy. That we’re childlike and have no awareness of anything sexual or grown-up, of anything relevant, really, to pop culture in general.

K: Right. I can remember being in high school and being seen as “Innocent” in a way that was very unhelpful as well as unhealthful for me. I straight-up wasn’t included in anything, ever. Not just in conversations, either. I mean, when I was a summer intern at the cable company, all my colleagues–co-interns, whatever–would go out for dinner or drinks, and nobody would include me at all. They’d be friendly and nice at work, but then they’d say, “Last night was fun,” and I would just be like, Oh, okay…?”

J: The whole idea of just meeting up with friends–I mean, paratransit was around when I was in high school, but I was so sheltered that the whole idea of scheduling paratransit to the mall after school, or taking the bus to meet up with my friends, just wasn’t on the table. I didn’t start doing that at all until I was like eighteen, nineteen. 

There’s this kind of delayed adolescence that disabled people go through. So it’s not as much that we don’t know certain things, it’s more the timing in which we do them, when we finally have the freedom to explore.

For example, I had wanted piercings and tattoos from the time I was a teenager, but my mom was vehemently against them. My brother was convinced that my startle would get in the way and I wouldn’t be able to have any. So, instead of going back and forth about it, debating about it, I finally realized, “If I wait until I am a legal adult to do these things, then no one can say anything.” And that’s exactly what I did. I got my first tattoo at twenty-four, with my own money! 

But even now, as a disabled person, there are times where–I don’t want to say I forget I’m an adult, but I feel removed from my adulthood. When society already infantilizes you, when you don’t look your chronological age, when your peers don’t include you in conversation, be it at work, in a bar, at a party, at a family function…When you don’t have very many opportunities to have sex on a regular basis, or in my case, when you have people around 24/7 to kind of help you to take care of your body and manipulate it in certain ways for you, you feel very removed from your adulthood and your body. 

K: Yes, and I think people–I’m talking people in general–have this notion of disability as something that happens to you. Now, in some cases it is. Obviously, if somebody becomes deaf or blind, or gets hurt, it is. But then, I look at my disability [cerebral palsy] and yes, along the way there might have been something that somebody medical would define as–I don’t know–a “brain event.” But on the whole this is not something that happened to me, it’s how I am. 

J: What I always say is, me and my disability? We coexist. Do you know what I mean? It’s just a thing that I have to live with, that is there, and some days I’m okay with it and some days I can’t stand it. Some days it’s just kind of whatever. But we coexist because more often than not I have to think about how it’s going to factor into whatever I want to do in my day. I’d like to say I accept myself regardless…but when you’re having a shit day people love to pull it out and point the finger, like, “See, you’re not really proud of it.” My answer to that is I may not be proud right now, but I am proud of living with it. For thirty-something damned years! I’m damned proud of that part!

Does it mean that I don’t love myself on those days? Or that I hate myself or wish somehow that I was different? No. It’s kind of like when your car won’t start. Most days you don’t love your car, it’s just a car. It’s just there. But when it won’t start and you’ve really got to get somewhere, you’re like, ‘Why right now?’ 

K: Right. The way I have always characterized my disability, the way it manifests itself, is like being sick, but not sick enough to stay home. It’s like having a cold. 

J: Yes, that resonates for me because my mother was always very vehement about me not missing school unless I was sick to a certain degree. So I hear that.

K: Indeed. Part of what inspired me to write this column was that I learned so late how many aspects of my disability were actually issues I could get accommodations for, instead of just struggling all the time. It’s not even about wanting to make my life easier, but just about having more opportunities and choices so my life makes more sense. 

J: You get prepared for nothing! I can remember being 16 and going in for a routine visit with my orthopedist, and his first question was if I had any pain. I said no, but mentioned I noticed being more spastic around my period. And he said, “Well, oh, that’s normal.” Mind you, I had had periods since I was nine, and he waited this long to tell me that’s normal? And even then it was years before I could properly manage it.

K: See, this is what always gets me about the use of the term ‘population’ for different groups of people with a certain diagnosis. People think that because it’s ‘normal’ they don’t have to discuss certain things, or they have permission to overlook certain things about a particular person’s experience in order to generalize: “This is normal for this population.” Well, I would have no way to know that. I may or may not have contact with other people in this “population,” so why aren’t you talking to me about what’s going on with me? 

J: Similarly, non-disabled people love to gloss over the accessibility conversation. They’ll say, “Don’t worry, I’ve got you! Whatever you need, you just let me know.” Okay, great, but what I need is for you to pay attention specifically to the things I’m saying. Even if we’re just going to do karaoke, or for something as simple as taking my jacket off: If you listen to me the first time, we’ll be okay, and I’m telling you these things up front so we don’t have problems later.

 

Another thing people love to do is say, “Don’t worry, I’ll make sure everything is accessible for you,” but I need to say, “How do you know what ‘accessible for me’ is?”

Another thing people love to do is say, “Don’t worry, I’ll make sure everything is accessible for you,” but I need to say, “How do you know what ‘accessible for me’ is?” Don’t assume that you know what my accessibility needs are and butter me up with comments about how you’re going to make everything accessible. I’d rather be in conversation with you about my needs and working together to make sure nothing gets fucked up. 

 

K: And people can kind of bristle when you ask specific questions. I remember one time in my first job I was planning an event, and I was on the phone asking a bunch of specific accessibility questions of the manager of the venue and he just said, “Well, flat is flat; it doesn’t matter!” I mean, no–listen to what I’m asking you! It’s like people don’t even want to have the conversation.

J: But also, a lot of times people will offer or make suggestions about an accessibility issue, but only because it sounds good. They have no intention of following through. I was supposed to go on a date over the summer with someone who was a Lyft driver. They said, “Oh, I can arrange an accessible Lyft for you so you don’t have to schedule Access-A-Ride to go home and we can spend more time together.” But they didn’t do it. 

It’s like people are afraid to do it or they think they’ll look stupid by asking questions. But I’d rather they have the conversation with me, in conjunction with me, so we can get a handle on this together, and so I know they’re just as serious about making it happen as I am. 

Even when two disabled people get close, whether it’s platonic or romantic, it’s not an instant knowing. There’s a lot we can sort of infer and it can be a very special thing, provided the other person is not going to get into “oppression Olympics,” even in everyday situations.

I have this thing with my best friend where we say she’s my legs and I’m her arms. She’s not so good with opening water or juice bottles. But she can transfer and help me to the bathroom. We balance each other out in a way where I can do more fine motor stuff and she can do more gross motor stuff. But It takes a lot of time and energy, and effort, to learn each other’s needs no matter what.

K: All of this really pings on something from when I was growing up, that the default was, “Well, you can’t expect people to do xyz.”–To get stuff about you, or cater to you in any way. You have to figure it all out. Finally I realized, “So what you’re telling me–Mom, Dad, and other people who are supposed to love me unconditionally–is that I can’t go out into the world and enter into situations or relationships expecting to be treated well? Thanks…Thanks so much!”

I’m not sure that was ever a conscious thing on anybody’s part, and it took me a long time to figure it out. But I think we have all had the experience of people–even other disabled people!–taking our disabilities as permission to be shitty to us. 

I’ve come to an understanding that ableism is a societal flaw to be sure, but also something that shapes people’s character.

J: The pacification is just as bad as the blatant mistreatment.  I get pacified a lot and that’s really hurtful and annoying because I’m the type of person to be assertive and say, “I find you attractive, do you feel the same way?” And then you can tell me the truth; you don’t have to tell me what you think I want to hear. You’re allowed to reject me as long as you’re not a fuckhole about it, and even if you are I can handle it, because I’m an adult!

K: It’s not just that people can get away with treating us a certain way, i.e., badly, but that they think they need to treat us a certain way because we’re disabled. “But I’m supposed to help you.” No, not if I don’t ask for it! 

J: There’s a thing for me–and I’ve had to tell a lot of staff this–but I move very slowly when I transfer, so if you try to move my legs for me or do other things too quickly, you’re actually going to make me fall. So just wait, I’ll get there. 

K: People think they’re helping, but they’re actually really, really hurting.

 J: I’ll never forget this one time–and this is possibly the most mortifying crap I have ever been through in my entire life–and this was my own mother. I was dating someone at the time and I went to work at one of the Abilities Expos. It was an incredibly long day and I happened to be on my period. Long story short, when I got home, my date helped me  shower. I didn’t ask her to, but it was fine, whatever. 

I end up telling my mom about it, and she goes, “Oh, my god, I have to make them dinner now, because I have to thank them for being so wonderful and nice to my daughter.” Meanwhile I’m saying to myself, “Hell, no, you don’t have to thank them…If they can boink me, they can help me in the shower. Never mind that I didn’t ask; they took it upon themselves!” By that point we’d only been dating a few months, even though we’d been friends for longer than that, but had we been in a longer relationship that scenario probably would have happened, anyway, so the idea that anyone who helps me must be a fucking saint? Just, no!

K: So what did you say to your mom? 

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.

 

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