I'm not talking about disability today. There's more important stuff for me to address with others and within myself. Our nation is suffering. We've got this wound that's festering and sick. We've got this wound that needs to heal, but most of us would just prefer to ignore it. Most of us pretend it isn't there, give the wound different names, blame it on something else, and become complicit in the sickness.

A few days ago a twenty-one year old white man walked into a historically significant black church, prayed with the black worshippers, and then shot nine of them dead. I will not name that white man. I will not make the excuses that are made on the regular so we can pretend that this is an isolated incident, some crazy with a gun. NO. This is the bloody result of a racist nation that refuses to acknowledge or name its racism. White folks, we have blood on our hands. As much as we cry for incidents like this--and I know a lot of us do cry and feel oh so sad--we are not doing enough. Our tears are selfish. Our tears are meaningless. They are not action. They are not introspection. They are not change.

We need to stop feeling bad in that self pitying way, that helpless way. We need to investigate ourselves. I've been asking myself a lot of questions these past couple of days. I've been asking myself about my own prejudices and my own learned racism. I know it's there. I know I learned stuff growing up in the whitest town in Idaho. I know I've got to unlearn so much that I learned in school, at church, from my neighbors, and even sometimes from my own family. I know I've got to ask myself these really hard questions that sometimes make me ashamed, and I've got to realize that my shame is useless. My shame is not action.

I've got to understand my white privilege. I've got to understand that the ways in which I'm unprivileged don't counteract the privilege I've got from my skin. I've got to use that privilege for good. I know that I cannot and will not be a white savior, but I can be an ally. I can be useful. I can act. I can ask questions. I can look at the people on the ballots. I can research. I can write. I can go to meetings when I'm healthy. My body may not always let me do what I'd like to do, but I can try to be useful. I can try to help excise this ugly wound.

We need to look at our history and name the ugly racism, recognize it for what it is. We need to look at our present and name the ugly racism, recognize it for what it is. We need to let our leaders and our judges and our police--our police especially--know that we will not accept racism. We will not let them blame the victims any longer. We need to recognize our participation in this--for even standing by and allowing these acts is participation. We need to acknowledge and make amends. We need to ask forgiveness. We need to act. We need to act. We need to act.

Disability is Loneliness

Here's the thing: disability is loneliness. It is isolation not just in illness and alikeness, but in solid, tangible fact. It is solitary confinement. Friends stay for a while. They offer their help. They are kind. They hope for the best. But when the best never happens, when the need goes on and on and on, they disappear. It is not a flaw in them. It is a human thing. No one can help out 24/7. No one can be there and understand and fill that well. There is no way to be less alone. There's nowhere to place blame for that.

I interact more with the mailman and the pizza guy than I do with anyone else. I'm too tired to cook. My legs ache. I see a human face while I fill in a tip and sign a receipt and ask for peppers and cheese. It's worth twenty dollars, right? I can make the pizza last three days, and three days of meals plus a human face and a human voice is worth twenty dollars.

I'm glued to my computer or my phone. Too many people complain that technology separates us. Satirical cartoons show people staring at phones instead of talking. There isn't anyone to talk to anyway. My friends live on my computer or my phone. Just past another screen there is a whole life out there and I just need to consume it, but I can't really. Second hand is good enough for now. Maybe someday it won't be second hand. Maybe someday I'll find a town where the buses don't suck and I'm not too tired and I'll make some friends and I'll do stuff that doesn't involve staring at a screen to see what everyone else is doing. Oh god.

Someday I'll find a way to repay and be useful and pay everyone back for every time they've helped. Right now I can only apologize for my uselessness. I am sorry. I'm sorry and I'm lonely and I wish I weren't this thing. I wish I could be the friend you all deserve and I wish I didn't need so much or have to ask for anything. I'm sorry.

Resources: Cleaning and Cooking

Epilepsy usually comes along with a few other disabilities of the brain (ADHD, depression, anxiety, etc), which can make life with epilepsy more difficult. I'm just going to post here some basic resources that have helped me get by and/or saved me time and stress. I intend to have a series on this because having resources and help is so freeing.

First and foremost: Unfuck Your Habitat

Yes, there's obviously some swearing, so this may not be a resource for the easily offended or the delicate of sensibilities. But this tumblr (and the app--there's an app!) has helped me so much with cleaning and staying on top of chores. There's nothing else quite like it. It encourages taking small steps with cleaning every day (so stuff does actually get done), but discourages marathon cleaning sessions (so you don't wear yourself out and never want to clean again). It's really good for people who have ADHD like me and will wander around the house aimlessly doing several things at once but never completing any of them.

Next: Organizing Solutions for People with ADHD

This is a great book on reducing clutter by reducing what you own, finding a way of organizing that works for you, giving up perfectionism, and also staying on top of the mess. I honestly think it would work for anybody, not just people with ADHD.

Now that we've gotten our lives less messy, let's move on to food.

Food can be an issue for those of us with epilepsy. I love to cook, but I've also had doctors tell me that stovetop cooking can be really dangerous. And I've got to admit I really wouldn't like to burn myself by having a seizure while cooking. So I've made a few adjustments that have helped me continue to cook delicious food while maintaining a certain degree of safety.

First, I own three slow cookers. Yep, three. One was a gift from my parents and it's tiny and I honestly have no idea what to do with it, but I keep it around because it might make a great fondue pot in case I ever decide to make fondue or date someone who isn't allergic to dairy and would like to make fondue. The other two I got at a thrift store and they are enormous. I purposely got crockpots big enough that I could use them to cook a whole chicken because sometimes I like to cook whole chickens and making tons of food at one time means I'll always have food available when I really don't have time to cook. Also chicken is much less expensive whole, and I hate having to pay over a dollar a pound for anything. I'm downright stingy when it comes to paying for food.

Find a few meals you're good at cooking and think of variations on those meals. I can usually find chicken drumstick on sale at a local store for $.88/lb.  I buy a few packages at a time, split them up into bags of three or four and freeze them. I can cook them in the crockpot with barbecue sauce until the meat comes right off the bone and use that for sandwiches. I can cook them in the crockpot with some herbs, remove the bones and add broth and noodles for soup. I can thaw them and add herbs and spices and cook them in the oven for about forty minutes at 400*, then 20 minutes on broil so the skin gets crispy (always check the internal temperature. Always). I can add cheese to that and make it extra awesome and delicious. I can add cheese and bacon and make everyone ever love me. 

^^That's just chicken. Those are just meals using chicken.

I'd say to invest in a cookbook, but honestly there are so many recipes online that I don't think you need one. I have a few favorite cookbooks, but I barely use them anymore.

If you need to make some quick and easy meals, No More Ramen is the place to go. Easy meals, easy instructions. They're also usually pretty healthy.

My biggest issue when it comes to food is shopping. Transportation is hard. Shopping while using public transport is such a pain. If you can find a friend who'll take you shopping when they go (arrange some kind of exchange--you'll cook for them, clean their bathroom, whatever they're ok with. People are friendly to this kind of stuff), that's the best deal. If you have to take the bus, having one of those little rolly cart things, is such a good idea. No one wants to carry ten bags on the bus, especially if one of the bags decides to break and show the world what kind of tampons they're using. But ten bags in a cart that you've covered in super-fashionable Hello Kitty stickers? Everyone is into that!

If you have questions, suggestions, or if you'd simply like to tell me that I'm totally disability-ing wrong, leave it all in the comments.

The thing about being sick all the time is that I don’t feel like I’m ever allowed to be normal sick. If I can do my chores and my homework and live my life when I’m having seizures, why can’t I do it with a cold or the flu? And I know other people think this way because I’ve had teachers get mad when I miss class for the flu (yet say nothing when someone walks into class halfway through because she lost track of time). I’ve had people wonder why I can’t keep everything clean and finish all of my chores. But right now I feel like I’m drowning.

I’ve been sick the past couple of days. Just migraines worsened by allergies and constant, constant exhaustion; but I feel so mad at myself when I don’t finish my chores, when I can’t get the tasks I’d set out for myself done. I know it’s unreasonable. I know I should be more accepting of my situation, but if I don’t do what needs to get done, who will? There’s no one else who will do it.

I posted this on FB, but a friend recommended I make it more public. So here you go kids:

Dear men of FB, 

Most of you on my feed are pretty decent, but I’ve seen this happening a lot on my friends’ posts so I’m speaking up about it. When women share their stories of harassment, sexual assault, and rape, we aren’t asking for your advice. We don’t need to be reassured that not all men are like that. We already know these things. We’ve already taken self defense classes. We already walk home with our keys arranged between our fingers. We already have a bat or gun or some other thing we can use as a weapon sitting by our beds. We already have our just-in-case plans. Those plans are actually something that take up far too much space in our minds. We already purposely avoid eye contact with men on the street and on the bus. We don’t need your advice. We’ve heard it since we were children.

And we already know the “not all men” story. If we thought all men were rapists, we wouldn’t be friends with you. Most of us have brothers and fathers we love and trust. At least the lucky among us do. Most of us have male friends we feel fairly safe around. It is not your job to remind us.

When we are sharing our stories, we aren’t being misandrist. We aren’t accusing all men of the harassment and assault that has occurred in our lives. We are comforting each other. We are hoping someone hears and realizes that this is a real problem that needs to change, and we need the help and support of the male half of the population to make any significant change.

Activisms and Inclusivity.

I've been thinking about activism. I consider myself an activist: a queer activist, a feminist activist, and a disability activist. I don't feel very comfortable in a lot of activist communities though because a lot of activisms simply don't consider disability. It's not that they're trying to be exclusive; they just aren't remembering to be inclusive. So I hear a lot of dismissive comments about "internet activists" and "feet in the streets; boots on the ground," which is great and all, but if I am going to have my feet in the streets I have to ride an hour by bus (a bus that's only available every thirty minutes) and be able to get the last bus home (between seven and nine depending on day--Sundays are out because the bus doesn't come at all, time of year and how the transit authority has decided it's going to screw my neighborhood). I also have to know that I don't have to walk too far (epilepsy is not my only disability, and I have severe joint issues that are exacerbated when I have to do a lot of walking or repetitive movements) either to get to the rally/vigil/meeting/protest or that if the even includes a march it won't be far or too strenuous. So when people schedule these events at times that are impossible for me or other people with disabilities and then get pissy about us not showing up, I get a bit peeved.

And it's not just the people who can't drive, of course. There are so many activisms that are inaccessible for PWDs because they fail to consider sign language or closed captioning or accessible buildings or reaching out to people who are unable to leave their homes for whatever reason. There are so many activisms and activists who don't think about their language and the repercussions when they use ableists terms to describe the oppressions their fighting. It's not welcoming to us.

It's boundlessly frustrating. And I'm tired of being told that I need to be less sensitive, take a joke, or be patient. No. I am an activist. I am as much an activist as any of them. They would not wish to have their queer or feminist identities insulted. Why should I be less sensitive about having my disability insulted? They would not like to be told to be patient about queer or women's rights. Why should I be patient about disability rights?

I'm not going to be completely negative. I will give kudos to those who've worked to be inclusive. I was asked to read a poem at my community's Trans Day of Remembrance, and they worked hard to be inclusive to those of all abilities. It was beautiful. The day was not about me, but it was lovely to see that this activist community took care to include as many people as possible.

I Look Healthy

I look healthy
until you see me have a seizure
or see me after I’ve had a few and I’m weak and nauseated and crying.

My disability is only invisible until it isn’t.

And I can’t decide whether I want people to understand that. My health, the state of my body and brain, is no one’s business except mine. But I should get credit that I push through day after day after day even when I am sick and sore and feel like it’s not worth it. And half the time I feel like I should wear a sign so the people who at least pretend to themselves that they are decent can realize that my fuel tank is empty. I do need to sit down on a seat on the bus. I do need to stop now—right now—and take a break. I can not attend just one more class. I’ve reached my limit.

Disability is exhausting. Learning to respect my body and it’s limits is exhausting. Teaching others to respect it is fucking impossible.

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.