Denied Disabilities, Denied Needs, Denied Accessibility, Denied Identity

Dear abled world who is constantly trying to rob me of my identity, this is for you.

 

I’m autistic, I need predictability to be able to navigate. My need for predictability is not an access need to you. My disability is denied. My reality is denied.

I can’t walk more than a few meters, and usually I need crutches. My ability to walk is impaired compared to what people in my age are expected to be able to do. This is usually seen as a valid disability, and my need for wheelchair accessible buildings is most of the times treated as a legitimate access need. My reality is validated.

I have ME. It’s a disease that has caused my inability to walk. Being ill with ME has also given me a shortage of mental energy, and I can’t focus for very long. This is a cognitive disability, but it’s rarely recognized. It’s the kind of disability that does effect my ability to perform in many areas, like speaking with my mouth and processing sounds. This is never recognized as a valid disability. My need for written communication isn’t considered an access need. My disability is denied. My reality is denied.

I have ADHD. I always think of at least 8 things at the same time. It’s exhausting to exist, and I need a lot of quiet time on my own without anything disturbing me. This is rarely seen as a disability. My needs are denied. My reality is denied.

I’m autistic. I need people to say what they mean and stop the camouflage talk, since it exhausts me to decipher and translate non-autistic language all the time. This is never considered an access need. My disability is denied. My reality is denied.

My body is too weak to stand up from the bath tub after having washed my hair. I need a handle bar on the wall and a shower chair to sit on. For occupational therapists that don’t know what ME and POTS are, this access need doesn’t exist and my reality is denied. With occupational therapists that have knowledge about ME and POTS, this access need is recognized and met. My disability is validated. My reality is validated.

I’m autistic. I interpret information differently than what people expect me to do. I interpret myself and my feelings autisticly. I think autisticly. I need to be understood as an autistic person, but that’s not considered an access need. My disability, personality and identity is denied. My reality is denied.

People tell me that I’m not allowed to identify with my disabilities, that I’m not my disabilities. Sometimes people tell me that I’m my disabilities shouldn’t affect my capability, that all I need is some accommodations and I should be able to perform like a person without disabilities. But I am my disabilities. I’m autistic, remember? My disabilities are lived experiences. The way I think and interpret information, it’s not possible to not be my disabilities, but I’m not even allowed to own my identity as disabled without the abled world trying to correct me.

What counts as a disability or as an access need is rarely obvious and just as rarely decided by us, the people with the lived experiences of disability. Pretending that everybody is agreeing on what a disability and a met access need looks like is nothing more than an efficient way to silence disabled people.

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Love with an Autistic Dimension

My mind is occupied with love. Love and autism.

I’ve experienced romantic love a couple of times, and I’ve had plenty of experiences of sexual desire. I’ve had romantic crushes that have faded, flings that turned into friendships, friendships that evolved into romantic relationships and so many other kinds of relationships where the experience of love has changed over time. At the moment, I love a couple of people, all in unique ways. My thoughts are often occupied with how difficult I find it to trust people and let them in, but when I think about it like this I can see how much warm feeling for other people I have at the moment and have had in the past and that makes me happy. Love isn’t one single, monolithic feeling or experience. Rather, love is multiplicity.

One of the people that I’ve been (or maybe still am) deeply, romantically in love with stands out in ways that I don’t know how to describe. I just wrote that all my experiences of romantic love have been unique to me and they have, but this one is different because not only did my love for her feel different than for all other people. My feelings for her had (have?) a whole separate dimension. Honestly, it’s not a perfect way to describe it, but I’m lacking words and that’s not only because I’m writing in a language that doesn’t feel fluent to me. What I felt (feel) for her was something so…special, rare, different, unique… no words are really fit here… that I don’t have any words in any language. Despite that, I have a strong urge to write about it. It doesn’t make sense. Or maybe that’s exactly what it does.

When I think about my time with her, Liz, I feel like I’m totally falling. It was like I was standing at a mountain and when I was with her, a separate world opened and we fell straight into it. Considering that the expression “falling in love is” exists in several languages, I suspect that I’m not the only one who have experienced the falling feeling. Tomber √† l’amour, falling in love. However, what was special with my feelings for Liz wasn’t the falling feeling, but that new dimension of intimacy.

It was like we fell straight into a world where our words and actions had a meaning that only we understood. Like the words I had been saying, writing, hearing and reading all of my life had only been making some kind of sense, because my undiscovered autistic self had always lived with such a chaos and confusion. When other people talked about how they, and as they assumed even I, experienced the world, it only fit to some degree. I had been trying to be that person that other people told me that I was, a real person that experienced sensations like real people should, and felt feelings like real people should. It had never fit, and all my words had always been scraping and rubbing my mind instead of fitting smoothly. And then I fell deeply in love with Liz and we talked about experiencing other people’s feelings, about not being able to shield ourselves and about wanting so desperately to be close to other people while easily being overwhelmed and needing space and quiet time.

I was shaken to the ground. I was so used to hiding everything that was me, so used to be an unrelatable freak that had to exhaust myself in my efforts to be like (what I thought was) a real person. With her, I lost everything that I had to defend myself. I showed myself to her and it scared me to the bone.

This happened several years ago, before I had understood that I am autistic. Up until recently, I never understood why I was so shaken by this experience. Now I think I finally know why.

Falling

Content Warning: This post deals with internalized ableism.

 

My bed is soft
my bedroom dark
my weighted duvet hugging me
and I – I am falling

The biggest, deepest, darkest secret
planted deep
its essence tangled in my roots
permeating everything
invading me

There is no me
without the false becoming the truth
the faulty becoming the real
the obvious demanding unraveling

Longing for confirmation and comfort

I’m kind of ashamed to admit this but sometimes I find myself in this really desperate longing for confirmation of my autistic identity. Very few people that know me behind the anonymity know that I’m autistic, and I feel like I’m fooling people, or being deceptive and manipulative. I don’t want to live in the closet like this, but I have to for my kid’s safety. I guess that’s why I sometimes long so hard for somebody to acknowledge my identity. For somebody to see that certain things that I can’t do or do in a specific way is because of me being autistic, and not because of my other disabilities.

There are people in my life who know that I’m autistic and respect it, but most of them aren’t autistic themselves. To be honest, I don’t know why that matters so much to me. But it does. Maybe I just wish I had a context, or an autistic community of people where I could stop the passing act. Where I could LEARN to stop the passing act, because right now I don’t really know how to stop it. Not that I always pass, because I do come off as weird, but my weirdness is perceived as being rude, shy, too intense or a bunch of other things that tend to be ableist with a touch of misogyni. That’s not a confirmation of my identity.

On top of longing for confirmation I’m longing for something else. This is even harder to admit but I need to state it: I want comfort. I’m not very good at being comforted by other people but right now that’s what I want. I want someone to hold me and help me carrying this mourning because it’s too much for me. A couple of months ago I wrote that I won’t mourn forever, but right now I’m wondering if it will ever stop.