Failing at Human Interaction

So I have this thing that makes me sad.  When I was in my twenties and living in an area that was extremely conservative and not very (read not at all) disability friendly, I went years without any real human touch.  Occasionally I’d wake up to the paramedics holding me down (that doesn’t count *at all*) or I’d get a hug from my best friend (this probably helped me survive), but I went so long without affectionate, loving (non-sexual) touch that everything seemed so lonely and cold and sad.  I’m a touch-oriented person. It’s how I express love and friendship. It’s not a sex or romance thing; it’s a comfort and affection thing.

The first time I went into the hospital for surgery in my twenties, I was shocked because the nurses touched me.  They bathed me, they held my hand, they talked to me. They treated me like I was human. At that point I think I’d forgotten my humanity, so few people actually treated me like a real human and equal. I got pity, sometimes I got disgust, but I never got equality. And part of me, I’m sure, felt like I deserved that, that I’d done something wrong and this alien status was my punishment; but being treated like a person who deserved affection, who wasn’t scary or weird or somehow contagious did something to me. I felt worthy. For the first time in years I felt worthy.

I think that was the beginning of my journey back to self-acceptance and happiness.

Sometimes I forget that other people legitimately hate to be touched. I know they have their reasons, and I know they have good reasons, and I feel so stupid when I reach out and they shy away. I feel like I’m made of poison again. Remembering that other people aren’t like me and don’t find comfort in the same things I do is something I need to work on because I really hate it when I’m trying to do something kind and feel like I’ve been unspeakably cruel.

I had nightmares about this last night. I woke up feeling stupid and mean, like I just don’t know how to relate to people or show them that I love them, that I want their friendship. I feel stunted.

I don’t know exactly why I’m typing this all out. I know I feel better after writing, and I know I need to reach out. I need to know if anyone else has these feelings, like somehow they got lost along the way and can’t do things right with other humans no matter how much they try. I guess I’m just feeling sad and lonely and self pitying.

Disability and Attitude

Here's the thing about openly challenging narratives surrounding disability: it pisses people off. When you say, "thanks but it's really not that inspiring that I put my clothes on and left my apartment today," they get a little miffed. When you post an article on Facebook about inspo-porn and the damage it causes, they get a lot angry and tell you that they do indeed have every right to have cuddly feelings about disabled people being disabled and the fact that you want to lay claim to your own body and the semiotics of your body just means you have a very bad attitude and it is no wonder you are still disabled and you are not inspiring at all.

It's actually a little bit funny, you know, the whole performance of disability thing. I mean, I get it. I get that non-disabled people want to feel cuddly and cute about us. They want to have that "everything could be worse" and "if she can deal with that, I can deal with this" stuff going on. But that's not an attitude of caring. It's an attitude of condescension. The people who care about disability are the people who are fighting for healthcare and public transportation and housing--and for the most part, those people are disabled. And whenever I fight for that stuff, whenever I say that my neighbors and I shouldn't have to deal with infestations of cockroaches or bedbugs or whatever the hell is invading our building, whenever I say that people shouldn't have to carry their mother/sister/daughter/son/father/brother up concrete stairs in a wheelchair because the disability housing list is so long they're no longer accepting applications; I'm told I have a bad attitude. That's ok. I don't need to be reassured about my attitude. I know a good attitude doesn't create housing or healthcare. My fierce and unrelenting advocacy might do something, though. The photos I take to document abuses in public housing might do something. They won't make people feel warm and fuzzy, but they might inspire change. And change is what we need.

I know that if I did something like help make beauty pageants for disabled girls, I'd get a lot less of this "get your bad attitude of my lawn" stuff. I'd also be furthering the myth of disability exception. And non-disableds would feel ok about "benevolent" discrimination and exclusion because we've got our own pageants and our own places and we don't need to be included.

I see a quote passed around by a lot of mothers of disabled children: "A disabled child wants what every child wants: to be accepted." This disabled adult wants what everyone wants: to be herself; to be herself in a world where her body is deviant and often defiant; to be herself without conforming to the expectations of society or confirming those expectations; to be herself with love for that self, without shame or regret or excuses.

So I wrote a paper for my diversity lit class last semester. This paper was awesome and is quite possibly the crowning achievement of my life. So I'm going to share it with all y'all.

Spinster

English 2700

December 10, 2014

Disability, Narrative, and Identity

In 1999 I had my first diagnosed seizure in twelve years. My friends and family were supportive, but as it became apparent that I would not be cured, I grew depressed and despondent. These were the early years of my adulthood. My friends were moving away, going to college, getting married, starting careers, and I was lost. The traditional narratives surrounding people with disabilities left me with little hope for the future. I took classes off and on, usually dropping out halfway through the term. I was certain I could not complete a semester, let alone a degree. I couldn’t be the intelligent and driven person I’d been before. I couldn’t just tick goals off my list like I’d planned. That wasn’t what disabled people do. That wasn’t what they are. 

 I’d seen the way people with disabilities were treated by the community. They were in nursing homes. At Christmastime we’d go visit them for church with condescending smiles glued to our faces. We’d hear sermons about “the disabled” being God’s special children here to teach and guide for they already had the holiness to enter heaven. They were incapable of sin.

 And at age twenty five, I was in disability housing (very much not a nursing home, though the locals and students insisted on calling it that). Students from BYUI knocked on my door and asked if they could adopt me as a grandmother for their “Adopt a Grandparent” program. I was the recipient of the condescending smiles and uncomfortable glances. I was the service project. I hated it.

 I may have been God’s special child, but I would have done anything to be normal. I hated depending on my parents and friends for rides to the grocery store. I hated not being able to make plans because I didn’t know if I’d have transportation or if I’d be well. I hated not being able to work. I hated the medication that made me sleepy or angry, that made me gain or lose weight, that drilled wide holes in my memory, that made my hands shake so constantly I felt like I couldn’t do anything I loved: drawing or writing or cooking.

I felt betrayed by my body, and I felt like I had betrayed my family, my teachers, and my community by becoming this thing, this burden. I was full of anger at the world and at myself. I felt completely alone. I didn’t know how to cheer myself into the inspiring disabled person I felt I was supposed to be—the person who loves life and never complains and adjusts perfectly in spite of all the circumstances. I felt guilty. I knew I was putting my family through hell not just by existing while disabled, but by existing with a bad attitude while disabled. I tortured myself with self-doubt. Things couldn’t be as bad as I thought they were. I could be happy and disabled. Mine was a character flaw, not a physical disability.

 I sometimes look back at this period and wonder why I believed all of these things about people with disabilities and specifically about myself. As I’ve researched disability politics, I’ve begun to understand. I’d fallen for the narratives about people with disabilities—narratives that are woven into literature, television and movie entertainment, and even the news media. I believed that because I was disabled, I was no longer the person I’d grown up to be. My identity was suddenly caught in this vague idea of what I was seen as.

 The most dangerous of these narratives and probably the most difficult for me to overcome is that people with disabilities are not humans of their own right. Through media and culture the disabled body has taken on a significance unrelated to the corporeality and even  reality of that body. In literature, for example, the disabled body (for roles or personifications of those with disabilities in the literary canon cannot rightly be called characters) is not the body of a human. The body is a metaphor or theme. Rosemarie Thomson states in Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature:

The disparity between ‘disabled’ as an attributed, decontextualizing identity and the perceptions and experiences of  real people living with disabilities suggests that this figure of otherness emerges from positioning, interpreting, and conferring meaning upon bodies. . . . Literary conventions even further mediate experience that the wider cultural matrix, including literature itself, has already informed. If we accept the convention that fiction has some mimetic relation to life, we grant it power to further shape our perceptions of the world, especially regarding situations about which we have little direct knowledge. Because disability is so strongly stigmatized and is countered by so few mitigating narratives, the literary traffic in metaphors often misrepresents or flattens the experience real people have of their own or others’ disabilities (10).

          I was having an identity crisis. I was disabled, but I didn’t fit into any of the disability narratives I’d learned. I wasn’t a saccharine and lovable Tiny Tim. I wasn’t an obsessed and haunted Captain Ahab. I wasn’t a tragic and misunderstood Quasimodo. I wanted my story to be as predictable and definite as any of these. It wasn’t. I was trying to live as a metaphor, but acceptable metaphors must be simple. I was complex. I was human. I was a miserable metaphor.

The disabled body is not only dehumanized in literature, though. The same unwritten rules that govern the bodies of non-disabled folk govern ours—perhaps even more strictly. Like queer and non-white bodies, disabled bodies are considered deviant. We wander from the norm. In earlier decades and centuries, people with disabilities paid for this wandering by participating in freak shows or by being subjected to invasive portraiture. These rituals allowed normative society a glance at the exotic and strange and the reassurance that they were indeed normal, natural, healthy, and human (Riley, 2, 9-11).

Superficially, things have changed for people with disabilities. If we look more deeply, considering social and cultural contexts of disability, things are very much the same. Documentary entertainment television focuses largely on people with disabilities. A&E shows Hoarders, Obsessed, and Intervention often focus on people with emotional disabilities. ("All Television Shows - A&E.") Intervention has an especially bad reputation among the disability community because episodes have portrayed people with legitimate physical disabilities as delusional and drug-seeking. One episode featured Linda, a woman with Ehlers-Danlos syndrome (a connective tissue disorder that can affect the heart, joints, and skin elasticity) who used prescribed fentanyl lollipops to relieve the pain of joint dislocations and sprains. Selective editing showed Linda as irrational and implied that Ehlers-Danlos was an imaginary illness ("Episode 100: Linda").

Despite their inflammatory nature, these types of television shows have a wide audience. For many people, they’re considered a break from the real world, trash TV. And of course if the TV is trash, the people in the shows must be even trashier. Programs like these take advantage of people with disabilities, turning their stories into cash while simultaneously making the people in the stories into caricatures and jokes.

Not much better are the fundraising or awareness-raising shows. These shows often feature children with disabilities being either inspirational or pitiful. It’s often a combination of both. They play upon the sympathies of the viewers and allow them to both feel better about their own relatively un-tragic lives and about their morality should they pay attention to the cause being advertised (Riley 13-14).

These are what disability activist and comedian Stella Young calls “Inspiration Porn.” In her June 2014 Ted Talk she says:

You may have seen images like this one: "The only disability in life is a bad attitude." Or this one: "Your excuse is invalid." Indeed. Or this one: "Before you quit, try!" These are just a couple of examples, but there are a lot of these images out there. You know, you might have seen the one, the little girl with no hands drawing a picture with a pencil held in her mouth. You might have seen a child running on carbon fiber prosthetic legs. And these images, there are lots of them out there, they are what we call inspiration porn. (Laughter) And I use the term porn deliberately, because they objectify one group of people for the benefit of another group of people. So in this case, we're objectifying disabled people for the benefit of nondisabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, "Well, however bad my life is, it could be worse. I could be that person."

But what if you are that person? I've lost count of the number of times that I've been approached by strangers wanting to tell me that they think I'm brave or inspirational, and this was long before my work had any kind of public profile. They were just kind of congratulating me for managing to get up in the morning and remember my own name. (Laughter) And it is objectifying. These images, those images objectify disabled people for the benefit of nondisabled people. They are there so that you can look at them and think that things aren't so bad for you, to put your worries into perspective.

And life as a disabled person is actually somewhat difficult. We do overcome some things. But the things that we're overcoming are not the things that you think they are. They are not things to do with our bodies. . . .

I really think that this lie that we've been sold about disability is the greatest injustice. It makes life hard for us. And that quote, "The only disability in life is a bad attitude," the reason that that's bullshit is because it's just not true, because of the social model of disability. No amount of smiling at a flight of stairs has ever made it turn into a ramp. Never. (Laughter) (Applause) Smiling at a television screen isn't going to make closed captions appear for people who are deaf. No amount of standing in the middle of a bookshop and radiating a positive attitude is going to turn all those books into braille. It's just not going to happen. . . .

Disability doesn't make you exceptional, but questioning what you think you know about it does (Young).

Disability has a narrative in our culture. That much is apparent. The narrative is a lie. It’s a lie that sometimes comforts non-disabled people, but it also disallows us from knowing each other as completely human. Rejecting the narrative is one of the healthiest thing any of us can do. These pre-set stories and definitions that come with our bodies are silly. We don’t need them. We can create our own. Our stories and definitions are so much more honest and human and strong than any given to us.

When I was in my mid to late twenties and living in disability housing in Idaho, things started to change for me. I was finally living with other people who had disabilities, and I liked them. I loved them fiercely. I loved Allison, who’d been in a car accident and could no longer get the words in her mind to leave her mouth. I loved Jeff, who was severely mentally ill and spent his days at the piano in the lobby providing music for the rest of us. I loved the men and women whose bodies were aging and who accepted it, who invited me to game nights and taught me how to play a wicked game of dominos.

I loved my neighbors. They were not metaphors. Their bodies were not metaphors. They were themselves: intricate and complicated and funny. I didn’t expect them to be anything but themselves. Why did I expect it of myself? Why was I shoving myself into this narrow box of acceptable definitions and attitudes. It was preposterous.

Ironically, when I made the realization that I didn’t have to be an acceptable disabled person, my attitude began to change. I found what most people would call a good attitude. It wasn’t and isn’t the simple, uncomplicated performance of disability people expect. It’s a complex, complete, and chosen happiness. It’s a happiness I fight for every day with humor and activism and introspection. I’m not the supercrip who’s learned to love herself and triumph in spite of her disability. I love myself with my disability and because of my disability. I love the spot of injured tissue in my brain that makes me so beautifully human. It is mine. It deserves love.

Works Cited

"All Television Shows - A&E." Aetv. Web. 11 Dec. 2014. <http://www.aetv.com/shows>.

"Episode 100: Linda." Intervention Directory. Web. 11 Dec. 2014.      

<http://interventiondirectory.wordpress.com/2011/10/16/episode-100-linda/>.

Thomson, Rosemarie. Extraordinary Bodies: Figuring Physical Disability in American Culture

and Literature. New York: Columbia UP, 1997. Print.

Riley, Charles A. Disability and the Media: Prescriptions for Change. Hanover, NH: U of New

England, 2005. Print.

Young, Stella. "Transcript of "I'm Not Your Inspiration, Thank You Very Much"" Stella Young:

I'm Not Your Inspiration, Thank You Very Much. Web. 11 Dec. 2014.

<http://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much/transcript?language=en>.

Last night I had a really bad seizure. I don’t remember a lot except throwing up many, many times; being dead tired; being afraid of going to sleep because I was throwing up, and I didn’t want to aspirate; and roomie helping me.

And now I’m remembering that this is a joke to some people. This thing that hurts me, that scares me, that could possibly kill me, is something that’s played for laughs in the “real” (not concerned with me at all, non-disabled, non-epileptic, could give two shits) world.

I keep forgetting how very little I matter.

A Cure is Unnecessary to My Happiness

 Please believe me when I say that. 

I DO NOT NEED A CURE FOR EPILEPSY.

Is epilepsy inconvenient? Yes. Is epilepsy frightening? A little bit, I guess. Is epilepsy painful? Sure, but I’m pretty certain the medications, the surgeries, and the VNS that didn’t work have caused me more physical and emotional pain. 

But if I don’t want a cure, what could I possibly want? Why do I even write about epilepsy? This one is simple. I want and desperately need accommodation. I want and desperately need a society where disability isn’t considered a tragedy. I want books in which disability isn’t a metaphor or a theme, in which the disabled body is simply a body—a body signifying nothing more nor less than any other body. I want people not to stare with pity or fear when I have a seizure. I’d also prefer they not avoid eye contact. I would like to be helped when I have a seizure, sure—that’s common sense—but I’d prefer not to be looked down upon or condescended to. I have a brilliant mind. I’m not afraid of saying that. I can tell when people are treating me with condescension rather than compassion.

I want and need businesses, teachers, employers, friends, and families to respect the needs and desires of people with disabilities. I want them to see us as fully human—not the nuisance that’s asking you to put in an elevator or wheelchair ramp and not the inspiration on the Jerry Lewis Telethon. I really, really, really need the Jerry Lewis Telethon and all things like it to go away forever. I need all y’all non-disabled folk to realize that the posters you have with people in wheelchairs or with prosthetic limbs featuring heartrending quotes in horrible fonts are a fooking insult. We aren’t here to motivate you or make you feel better about your lives.

I need public transportation with reasonable hours and fares and bus stops that aren’t on crumbling sidewalks or in inaccessible areas. I need affordable housing. I need affordable medical care. I need specialists who are available more than once a year. I need pain management that isn’t treated with suspicion. 

I need everyone to realize that I love my disabled body and you can stop praying for me now. At the very least you can stop telling me that you’re praying for me. You can believe me when I say things are fine like this.

You can stop thinking I’m exceptional because I’m happy. A lot of people are happy, and the epilepsy was never an obstacle to my happiness. A lot of things related to it were, but those were more based on cultural expectations and my own mistakes about buying into the narratives surrounding disability. I know better now. I’m happy. I’m tough. I know how to get things done.

A cure would probably be nice eventually, but right now I’d really like open minds and hearts. I’d like to see accommodations available to all people with disabilities. I’d like to see things like medical care, affordable housing, and public transportation considered an essential part of the infrastructure of this nation. I’d like my contributions to society to be acknowledged rather than ignored simply because they aren’t part of the Ayn Rand/Fox News necessity checklist. I’d like the voices of people with disabilities to be part of the canon. I’d like our stories to be vital. I’d like it if I didn’t have to be the one making non-disabled folk comfortable with my bodily difference.

I’d like to never again hear an ableist comment. I’d like it if I never had to explain why they’re offensive. It would be so nice if the concept of basic politeness wasn’t met with a sneer and random mumblings about “censorship” or “political correctness run amok.” It would be lovely if (and for true equality it is essential that) civil rights movements considered the rights and needs of people with disabilities, if we weren’t considered secondary to the movements in which we participate, but our rights were just as essential to the success of these movements as those of any other group.

I’d give my first born child to never hear eugenicist comments from people who consider themselves liberals.

All of these things matter more to me than a cure. And all of these things will do more good for PWD and society as a whole than finding a specific cure for a specific disability. Funny how that works.

X-Posted from my tumblr: http://epileptiwhatever.tumblr.com/post/105019504453/a-cure-is-unnecessary-to-my-happiness

Hey Everybody

I'll be adding a number of posts I wrote on Tumblr when I was away paying no attention to blog stuff and dealing with life stuff like school and roommates and people. They should be showing up over the next few days. Enjoy the influx.

Passing

A while ago I had a conversation on FB that led me to realize some things about myself that hadn't occurred to me before.  The convo was about women's health/invisible illnesses/the like, and I mentioned that whenever I go to an appointment of any kind, I get dressed up.  No, I don't wear my Sunday best, but I'll put on a pair of slacks, a nice top, and usually a blazer.  I do this because I want to be taken seriously.  I already have three strikes against me: I'm female, I'm disabled, and I'm low-income.  If I went to my appointments in clothes that actually reflected the way I feel physically (probably yoga pants and a sweatshirt), I would be dismissed as another "parasite on society."  So even when I'm sick, I dress up, I put on makeup, I do something with my hair. I do this so doctors, teachers, therapists, social workers (people who are supposed to have my best interests at heart) will take me seriously.  And it works.

So I was a little bit shocked when a friend commented, "Spinster, you're passing."  I had never thought about it like that.  But it's true. I'm a disabled, low income woman passing as an able-bodied, middle class woman so people will take me seriously.  So people will think I've got my shit together.  I practically purr every time I hear a medical professional describe me as high functioning.  A high-functioning epileptic who has three seizures a week and is somehow managing to hold it all together.

The thing is, though, I don't feel high functioning.  I don't feel like I'm holding it all together.  I feel like I am putting on armor of pretty clothes and makeup so the people I know won't see my weak spots, won't see that a lot of the time I am barely functioning, exhausted, and living off coffee.

I'm extremely lucky.  I live in a city with many, many hospitals and medical services available.  I have a therapist who has taught me that a lot of the things I thought were flaws in my character are simple consequences of having brain damage. I'm attending a school where I'm treated extremely well by teachers who are amazing.  I am finally starting to see the life I dreamed of, the life I always thought my disability would make impossible.

But I am not the face I show the world. I'm just passing.  And a part of me knows that I will be uncovered soon enough, that some doctor or teacher or fellow student will someday say, "You aren't what you've been telling us you are.  You are not that pretty middle class lady."  I don't feel like the pretty middle class lady.  I feel more connection to the kid on the bus with the studded leather jacket and pierced everything than I do to the women who look and dress and act like me.

Something about this makes me very sad.  I don't really want to be the persona I put on each day.  I want to wear my scars proudly and let the world see what I am.  But I'm a coward (that's also part of what I'm hiding).  I'm afraid that they'll see who I am and decide I'm worthless.