Invisible Body

19 thoughts on Invisible Body

1. I really love this post, thank you for writing! But I do have a question — just as with any body type, ability status, or anything, most people have different ideas about what is appropriate or rude, what is acceptable to talk about, what is offensive. I love that Eva is so completely confident with her body (most “able”-bodied women can’t even say that), and I wish I knew this and then met you, I would love to be completely honest and open.

   But how do we know who is and isn’t at this level of comfort and acceptance with their body? I would hate to make assumptions about other women with CP, for example, and then ask a question like “So, tell me about your disability” if she isn’t in the same mindset as Eva. I generally don’t comment on anyone’s body, regardless of its shape or size or perceived ability..

2. I don’t ever mind being an advocate for mental illness or even being a source of information. I know at times the rule of thumb is that those in a marginalized group ought not to have to explain themselves to those outside, but I guess my attitude is that better they get the information from an authentic source rather than believing in a bunch of misinformation. When people ask questions, I respond, though mental illness is still such a strict taboo that I usually get very cautiously worded inquiries or, more often than not, nothing at all.

3. The reason I am often nervous to mention people’s disabilities, even when I am confused or curious, is because I’m very tied to the idea that it’s not the disabled or otherwise “othered” person’s job to teach me about the ways they may or may not be different, and that it would be greatly intrusive for me to assume that they have that responsibility. Clearly, you have made the choice to be available as an educator to everyone from friends to that squirmy kid at the mall, and that’s deeply laudable, but how can I differentiate between people who are willing to teach and talk about disability and people who are just living their lives and would prefer privacy?

4. I’ve approached this by simply gauging people. When I meet someone, I try to get an idea quickly by tone or body language whether this person is open or guarded, or garrulous or taciturn. I try to let those impressions guide early discussion. This is something I follow regardless of who I am meeting. Have I made mistakes reading people? Sure, but I’ve been more successful than not gauging what is appropriate to ask at meeting someone or early in an acquaintanceship.

5. I’ve always thought that I’d rather accidentally ignore someone who would be happy to discuss something, than intrude on someone who would rather have remained private. So while I’m not in the “pretend they’re not in the room” category, I will never, ever, mention anything which could even be vaguely related to discussing someone’s ability status unless they do it first.

   From your post I can’t tell if you think that’s a bad idea, statistically speaking…? Are you saying that the norm should be one of polite engagement rather than polite avoidance? Or are you just pointing out that there’s collateral harm in both choices?

6. The daughter of a long-time friend has Cerebral Palsy. Now, I knew this girl (who was a few years younger than I, but not many) had had an awful time with doctors, and of course I knew she got around on crutches, but I didn’t actually know she had Cerebral Palsy for, I don’t know – 15 years, maybe? It was just, there were problems with the birth, the doctors were @$$holes, the doctors SINCE then weren’t much better, and how is school and that guy you were seeing? She was pretty, she was smart, she was independent, she was on crutches, and I was all about swapping makeup tips and Where’d You Get That? because our colouring was similar. I was so oblivious, it never even occurred to me that she was disabled, even though she was on crutches. I think my brain had processed “Crutches=Injury”.

   Which, I don’t know that that was necessarily pertinent to this post, except to let you know, Eva (and perhaps others here as well) that some people who aren’t disabled (or not visibly disabled) won’t necessarily see you as disabled, either – even if you use a cane, or crutches, or wheelchair. Especially if some of those folks have spent time on a cane, or crutches, or wheelchair, themselves.

7. But how do we know who is and isn’t at this level of comfort and acceptance with their body? I would hate to make assumptions about other women with CP, for example, and then ask a question like “So, tell me about your disability” if she isn’t in the same mindset as Eva. I generally don’t comment on anyone’s body, regardless of its shape or size or perceived ability..

   This is what I was thinking. I’m not particularly comfortable assuming that I’m welcome to ask people about their physical characteristics unless I’m more familiar with them. Granted, I’ve been on the other end of this “social-boundaries” dynamic. I’m don’t know if it’s even a disability, and it’s certainly not equivalent to cerebral palsy if it is, but I do have strabismus, which is more commonly known as being “wall-eyed” or “cross-eyed” (terms I despise for their inelegance and inaccuracy) and sometimes mistaken for “lazy-eye” an informal term for a different condition.

   In practical terms, it’s mostly cosmetic, though I do have some issues with depth-perception. I saw Avatar in 2D- despite the fact that I was wearing 3D glasses. I won’t lie- it has affected my ability to interact with others socially and it also factored into certain life-decisions. As a little kid it wasn’t too big a deal, other kids would ask, “What’s wrong with your eyes?” and I’d just answer. It was only when I was a little older that the kids at school started making fun of me for it. Now as an adult, despite it not always being noticeable, I know when people spot it. They look behind them to see what I’m “seeing”, for example. Then you see realization dawn and they don’t ask for a long time after knowing you. Then they walk on eggshells and make me feel much more self-conscious than I would if they just asked normally like they just noticed me wearing a hat or pair of sunglasses.

   That said, I can’t say honestly if other people like me would appreciate more candor. I do know I’m curious about some people in wheelchairs- it’s a natural reaction to be curious about the people around you to some extent. Still I’m too concerned about boundary issues to bring it up.

8. This is an issue dear to me. I’m working on a documentary, Three Mountains, currently in production. It’s about a man, Joe Perez, who was born with CP. He was told he would never walk, never speak, and would die aged 25 in a wheelchair.

   Now 67, Joe has run the marathon, as well as being a silver Paralympic medallist (where he broke the able-bodied weightlifting record). A lifelong martial artist, he’s in training for a jujutsu demonstration against able-bodied opponents; we are following his progress for the film. I’ve seen him throw the 6’3 director of the film over his own head. He was also married for a long time (sadly she passed away in the 90’s) and currently has a girlfriend.

   Joe has taught me a lot about how people with disabilities are treated, and how they are written off, professionally, personally and in every other way imaginable. It’s amazing how hard he has to work just to get the same things that others expect to be given. Like the OP, he prefers that people just ask him what’s up with his body if they are curious.

   So well done you for saying this. And here’s a link to more info about the film: http://www.youtube.com/watch?v=AqB_5lK2wec

9. I don’t have any visible disabilities, so I can’t relate to this experience directly, but my principal concerns about talking about a visibly disabled person’s body would be:

   (1) Somebody probably asks this person about their disability all the time and they must be sick of talking abut it.
   (2) I’d be concerned that it would be seen as reducing them to their disability and ignoring their other personal characteristics.

   I’m actually surprised people don’t ask about your body; my expectation would have been the reverse. A blind friend of mine complains that it’s invariably the first thing people want to talk to her about, and she finds it extremely frustrating.

   My thoughts are also informed by my experience as a person with an invisible disability, which I hate telling people about. Not just because it makes people look at me weird, but because I find it an incredibly boring conversational topic.

10. I have to second “a lawyer.” I have a friend who works at a theater and she complains often about all the rude people who constantly ask her why she’s in a wheelchair and try to make jokes about it and such. I have to admit that I’m always curious, but I am also afraid that asking or even mentioning will be construed as rude or nosy. I go through the same thing when a friend’s pet dies, or if one of their family members becomes ill or injured – I always want to ask questions, but I tread VERY carefully because I’ve had friends in the past snap that I was making things worse and they didn’t want to rehash the details. Which I understand if you find yourself having to tell the same story over and over, especially one that is intensely personal or painful.

    I don’t think I would ever hesitate to compliment someone’s clothing because they were in a wheelchair (or otherwise disabled), though, even if I were too scared to ask about their disability. I do understand how people may go out of their way to avoid looking because they are afraid of making the individual feel self-conscious or stared at. I never considered that not looking can make someone just as uncomfortable.

11. From your post I can’t tell if you think that’s a bad idea, statistically speaking…? Are you saying that the norm should be one of polite engagement rather than polite avoidance? Or are you just pointing out that there’s collateral harm in both choices?

    Or maybe not so much “collateral harm” as a norm of ableism that makes interaction complicated? It’s difficult to constantly explain, and difficult to live with constant ignorance.

    I’m seeing a lot of commenters asking what they’re supposed to do, then. I think there’s no single boundary to apply, because different people deal with the two-sided problem in different ways. “Awareness” sounds so mushy and inadequate–but what am I supposed to do, then?but I think it means being aware of this level of complexity, since people living with disabilities can’t really ignore it.

12. I think I’m going to start using ‘armor chair’ instead of ‘wheelchair’ all the time. It sounds like the transport that would be used by some kind of medieval bad-ass superhero.

    (Sorry this was an entirely non-substantive comment. But armor chairs sound awesome!)

13. “My thoughts are also informed by my experience as a person with an invisible disability, which I hate telling people about. Not just because it makes people look at me weird, but because I find it an incredibly boring conversational topic.”

    Word. I have to live this every second, and the last thing I want is people assuming I want to talk about it in every encounter as well. I get more than enough of this from certain family members. I’m much, much more than my disability.

    As a person with a stigmatised disability, I also can’t think of anything worse than random people feeling free to ask me about my body. I’ve had quite enough of being subjected to lectures about how people’s uncle’s friend’s hairdresser had “airquotes” syndrome and were really faking it, or about how people’s kid’s schoolteacher’s neighbour tried A vitamin powder and they can hook me up, or about how real disabled people are B or do C or look like D, or about how terribly dangerous I am on that scooter hur hur hur, or about how pain and fatigue is all in the mind and a positive attitude (or fresh air or exercise or diet or acupuncture or or or) could cure me.

    Treat me like a person, not a disability, and keep your nose out of my medical file unless I invite you in.

14. Thanks for such a wonderful post, and your right people should be more open when it comes to people with disabilities. I think our society really needs to work on understanding that just because a person is different doesn’t make them less of a person.

    I think that there is a notion at the heart of this, that people are taught to pity those who are disabled. When you come from that mindset, many people feel they’d hurt the person who is disabled’s feelings by bringing up their disability. I think it’s tough for many people to understand that ignoring a person’s disability in aim to appreciate them as a person, is damaging just like pointing out their disability rudely would be. Both make a person feel like people only care about part of them, and not all of them.

    One of the reasons I like Sesame Street and still watch it is because they do such a wonderful job of including children who are disabled, without othering them.

    It seems though that nobody wants to recognize adults who are disabled in the way they’re willing to acknowledge disabled children. I find this common in the Autism community as well. It seems people I don’t know if saying they see children with disabilities as a novelty would be the right thing to say, but they’re more willing to see them for who they are than they are with adults. I think it could be that our society accepts that children are dependant, but looks down on adults who are dependant. That if someone isn’t a functioning adult, being out in the world on their own, or whatever then it’s seen as something pityable. I hear in other countries it’s not strange at all for a child to live their entire life around their family, but we’ve decided that something is wrong with that in the USA and I think it’s also the same in the UK.

    So I don’t think it’s a simple as a matter of discomfort, as much as our society reinforces the idea that if a person isn’t functioning, that they’re to be pitied or seen as a burden on society. Unfortunately, it’s not much different then how the Nazis viewed the disabled.

15. Thank you for this post. I think no one will be offended if the question is evidently asked in a sincere and respectful way. Kids are spontaneous and, usually, their questions are devoid of malice. In my case, I’ve struggled with a psychiatric disability which often goes unnoticed until I have an exacerbation. I’m not sure how comfortable I would be explaining what it’s like but the difference between “what the hell is wrong with you?” and “what is it like going through this” is rather obvious, I think.

16. “I think no one will be offended if the question is evidently asked in a sincere and respectful way.”

    Do you also think it’s ok for random adults to wander up to gay people on the street and quiz them on their experiences with coming out? To go up to folks in the mall and say “Hey, what’s it like to be black”? To come and sit down at a cafe table with someone they assess to be a visibly poor person, and start picking their brains about managing their money and dealing with classism? To tap a trans woman on the shoulder and ask her how her transition is going? These sorts of interactions can range from intrusive to downright terrifying. They’re all Othering.

    This sort of idea is the sort of thing that makes me want to stay the hell _in_. I barely have the energy to cope with everyday interactions (and then only on limited days); having complete strangers invade my space and ask me personal questions about how my body functions would be waaaaaaay past the limit. Kids asking about the scooter? That I can manage. I expect adult strangers to observe appropriate distance unless I’m giving strong signals on inviting them into the conversation; and then, HEY I COULDN’T HELP NOTICING YOU’RE DISABLED shouldn’t be the first thing that happens. Maybe the people who want these interactions could use a sticker or T-shirt inviting them, and busybodies can treat the rest of us like anyone else, or leave us alone? (Actually, the Evol iPod headphones are one of my more useful assistive devices when I’m wanting to be left alone while I go about my business. Works a charm, mostly.)

17. I have to agree with lauredhel.

    My disabilities are invisible, my service dog is not. I knew getting into this that people would want to talk about him, but I should be able to say I’m busy without getting dirty looks.

    While I don’t like having the fact that I’m disabled ignored anymore than I enjoy having the fact that I’m black ignored, generally, I don’t want to talk to random strangers about my health.

18. I don’t think Eva is suggesting that you go up to every disabled person and grill them about their disability, rather that you shouldn’t ignore them out of fear of reminded them that they are indeed disabled.

19. “Kids, on the other hand, will just come right up to me in public and say “why are your legs like that?” One little girl asked me, “Why are you in an armor chair?” I think that’s great because after I explain, kids are usually like “Cool!” and proceed to talk to me about other things. Their parents on the other hand, usually yell at them for asking such a “rude” question. I honestly wish that more adults would just come up and ask questions because then they might actually see that I’m attractive, intelligent, and disabled too.”

    I think this every single day. 🙂

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