un(desire)able

what do you think makes someone less worthy of dignity, care, and respect? an angry letter to the ableds here, there, and everywhere

I am 29 years old. All of the people I grew up with, went to college with, worked with in my early 20s, they’ve all grown up and moved on. They have jobs, businesses, communities, and many of them have children. Many of them own homes and cars now. They have moved through the course of their lives in mostly predictable ways.

If you had told me at 19 that I’d be here (lying in bed at 1:30pm on a thursday with a cat by my side and pain rolling through my body that simply won’t work today) I would’ve been shocked. I would’ve been depressed by the picture. I would’ve wondered what the point of going on just to end up here was (internalized ableism was STRONG in me then).

Everything in my youth pointed to the signs of my disability, but everyone in my youth pointed to me and said “they’re lazy, obviously.” and I believed them. So I worked even harder, pushed my mind and body to the limits of their abilities and then past them. I couldn’t understand what I was doing wrong that caused me to be unsuccessful in school, jobs, and social situations. No matter how hard I tried, I ended up in the same place. In my bed, under the covers, sobbing about my inability to do “normal” things. I was an undesirable employee, daughter, student, friend, and often partner.

I spend a lot of time now, thinking about homeless people. There’s a lot of homelessness in my town/ area. As a bus rider, and fellow poor person, I find myself often sharing space and conversation with homeless folks. I have been a homeless folk. And I watch, in my town, as middle class people ignore them instead of speaking to them respectfully or helping them out. Because they’re dirty or stinky or hard to understand. But really—they ignore them because they don’t want to be uncomfortable. Apathy is so much easier to swallow than truth.

Who is desired in our social spaces? In our homes? Our families? Our friend groups? Think about who shows up to the parties you go to. How many of them are homeless, or mute, or disabled, or black, or anything “undesireable”? And if there are undesirables in your spaces—how much time and energy do you think they are using to hide everything about them that you would find uncomfortable or unsettling or undesirable?

You may think you are above the politics of desire—but you aren’t. Those judgements you make about the autistic kid who is too loud or the intellectually disabled adult being pushed in a wheelchair by their caretaker—those are facets of desire.

Do you want me around? Do you want to hear out my opinion? Do you want to listen to me ramble on about my special interests? And what about when I can’t walk or leave my house? Do you still want to see me then? What about when I can’t speak? When my throat seems to close up and my mouth won’t shape words and I’m so frustrated I could cry? Am I still desirable then? Am I still worthy then? Do I still deserve love and care and kindness when I have a meltdown and am yelling and throwing things— because I am so frustrated and angry and I need those feelings to be outside my body and I know how it looks on the outside but I just can’t stop? Do you still desire me in your presence then?

Or do you tolerate me at your parties and your meetups and your events (because my disabilities can be hidden, mostly) to prove to yourself that you are an ally to disabled people? Even though you won’t even try to wear a mask or social distance and the music is too loud, and it’s too bright and too hot, and no one has even said a word to me?

Do you imagine, in those spaces, that I don’t know how undesired I am there? That I don’t see everyone treating me like the 5 year old who isn’t supposed to come to adult parties?

Do you imagine that I don’t know how little the people around me care about me?

Could you, imagine, that perhaps that’s why I leave parties early, sit on the sidelines quietly, stop coming to group activities?

Could you imagine what it’s like to walk home from somewhere, in so much pain you think your bones are broken, to get home, try to sleep and not be able to for hours, and finally wake up completely immobilized because going out with your friends yesterday was just too much for you?

You probably can’t. Most people can’t because many people in fact have never even broken a bone, or even sprained something. Which means no one is thinking about my experience in the space, or if it’s even accessible to me at all.

And if you aren’t thinking about making your spaces accessible to me, an ambulatory cripple, a wildly autistic and progressively deaf person—then I know you aren’t thinking about including people in wheelchairs, people with severe incapacitations.

Because they aren’t desirable to you. You can’t imagine what those people could add to your life or your spaces.

And fuck you for that.

Fuck all of you for your thoughtless behavior to homeless people, disabled people, and anyone you imagine is undesirable to you. We are all human beings. I don’t deserve to live in the street because I am incapable of holding down a job. But that is where I would be if my partner left me, died, or could no longer hold down their job.

No one deserves to live without care. Some of us cannot administer that care to ourselves. You may be able to brush your teeth everyday on your own. I can’t. You may be able to cook yourself three meals a day. I can’t. You may be able to walk a half mile or a mile to wherever you need to go. I can’t. You may be able to shower on your own. I can’t.

I still deserve a clean home, a clean body, good nutrition, and a safe home to live in. So does everyone else. More than that, I deserve community, healthy relationships, and accessible spaces that are safe for me so I can leave my home and experience the world without the consequences of a major illness or weeks spent bedbound.

But everywhere I go—I see how if I was myself, if I lived my life in full acceptance and accommodation of my disabilities, there would be no where for me to exist. I would become too undesirable.

And it’s painful to know that the people I care about, I think about, are not thinking about me. They are not thinking about how difficult their homes are to navigate. They are not thinking about how they are the reason I am not using my mobility walker (because it would inconvenience them). They are not thinking about why I cannot leave my home or must cancel plans. They are not thinking of me at all. Because to think of me, is to consider my disability. I am not separate from my disabilities. They are me and I am them. And we are tired.

I am tired of making myself pleasant or smaller or less needy for others. I am tired of ignoring ableist micro-aggressions because it would “stir the pot” too much. I am tired of seeing people more visibly disabled than myself be disrespected. I am tired of being the only one in the room who can speak to a homeless person with kindness and dignity. I am tired of forcing my body through strenuous activities because I don’t want

to be left out. I am tired of working overtime mentally to read your lips and put together context because everyone refuses to learn ASL. I am tired. I am tired of hearing how “lucky” I am that I “get” to nap everyday.

I do not want to sit alone in my home with no one but my husband and my cat to ever communicate or fellowship with. But I can no longer allow myself to exist in spaces that are not for me. I want friendship, love, comraderie. I care deeply for others. And I will no longer continue to believe that I am the problem.

If you feel that people too different from you, too disabled, too loud, too angry, too black, too fat, too poor, are undesirable and you don’t make your spaces accessible to those people—you are the problem.

I am unable to make myself desirable or comfortable or palatable to you. I work very hard to be kind, thoughtful, generous, and honest with myself and others. And if that isn’t enough for someone to want to be in my presence, then go to a fucking performance because this show of desirability is closed, permanently.