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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A Weak, Valuable Body

The result from image searching “inspiration porn”. 22 pictures, 13 of them are of visibly disabled people who are performing physical activities. Click on the image to go to the search result from Google.

There are so many reasons for why I strongly dislike inspiration porn (it dehumanizes disabled people, it’s used as an excuse to not make contexts and places accessible and it’s used to maintain oppression of disabled people) and there are a number of people who have written and talked about why inspiration porn is a bad thing. However, there’s one aspect that I haven’t read very much about: How inspiration porn tends to value strong bodies more than weak bodies.

I’m talking about the kind of inspiration porn where there’s a picture of a disabled person doing something physically demanding, like climbing a mountain, boxing or running a marathon, with a comment stating something like “She didn’t let her blindness stop her, everything is possible!” or “If she can so can you. No excuses, just do it!”

This worshipping of physically demanding activities isn’t limited to inspiration porn, it’s everywhere. Physical activities, like exercising, are frequently presented as the solution to all sorts of health problems and sometimes it seems to be so holy that the most oppressive, paternalistic ideas are accepted as long as it’s in the name of promoting physical activities. As an interesting example, we have this thread on twitter with the message “Movement is medicine”.

Image of stairs and escalators in what looks like a metro station. The stairs are made to look like running lanes, accompanied with an image of a person running up the stairs. Click on the image to get to the twitter thread where it’s from.

However, when it’s combined with ableism in the shape of inspiration porn, it gets even more problematic. Why? Because it tells us that a weak body is a bad body. That a body that can’t perform physically, doesn’t have the same value as bodies that can. It tells us that disabled people can be valuable as long as we can manage to be physically active. If we’re physically active, we’re excused. Then we’re good disbled people. It becomes a moral aspect of who we are. It’s the same kind of idea promoted in the sentence “Teach your daughter to be proud of what her body can do, not what it looks like”. But what happens when people have bodies that can’t do that much? Are our bodies bad bodies?

My body is weak. It can’t perform. Physical activities make it weaker and make my disease more severe. My body can’t be pushed to obey. My legs can’t run anymore. For walking more than a few meters, I need support. I can only sit up straight for a few minutes. I’m physically weak. The message I get from everywhere I turn is that a weak body is a bad body, and that a physically inactive person is a bad person. I don’t agree with this message, but I get affected by it.

I think fat activism is great and I think that kind of activism is needed for ill bodies, weak bodies and disabled bodies too. Because by now I’ve been ill for several years and I don’t have much muscles left. My body doesn’t only feel weak, it looks weak and it’s starting to really get to me. The other day when I passed my mirror I realized that I’m starting to feel bad about how weak my body looks. This is a kind of internalized ableism and I don’t want it.

Switching Roles of Pain

My partner hurt his foot the other day. It’s probably not serious but at the moment he is in pain and has to use crutches to walk. To my own surprise this is evoking quite a lot of emotions, and several times a day I find myself thinking about practical solutions in an attempt to get rid of these feelings. When I tell myself “stop it – deal with your feelings” I reach a point where I start reflecting on my experience of vulnerability. It’s hard, but also a big relief.

Seeing my partner in pain gives me an urge to do anything that can eliminate his pain, because I don’t want him to suffer. Unfortunately I can’t do very much about it and I know that in this situation the best thing I can do is to accept that, and not let my incapacity cause me frustration that then becomes an extra burden to my partner. This experience is a switch in roles, because usually he’s the one who has to deal with the experience of not being able to make my pain go away, as I’m the one living with chronic pain. The situation is difficult, but it does give us both a better understanding of the other’s challenges. Because no matter how much we talk about this stuff, we are two different people with two quite different ways of perceiving the world and there are nuances, feeling, thoughts and sensations that aren’t being captured in our words. Not yet, at least.

This situation highlights power dynamics that usually are more obscure. The position I’m in right now when my partner’s new limitations make him more depending on me puts me in a position of power. It exists simultaneously with me having to deal with my incapacity to make his pain go away and with my dependency on his help in my everyday life. I have to deal with being in a position of power and feeling frustrated because of my sense of powerlessness at the same time. I do this everyday (that’s what being a parent is about) but it’s new in relation to my partner.

Reflecting on the changed power dynamics has brought me to face the experience of vulnerability, and that was what this post was originally planned to discuss. As it turns out I had a need to sort out some line of thoughts first, but I’m planning on writing about my thoughts about vulnerability in my next post.

 

Sexual Desire and Not Tolerating Arousal

In this post I will discuss sexuality, desire and arousal in relation to the disease ME/CFS. There will be no mentioning of explicit sexual activities. I’m writing this because I’m trying to figure some things out, please do not give me advice on how to practically solve the problems mentioned. If you find this an odd request, you can read more about why getting advice is an issue to me here.

The problems with arousal and ME

The core symptom of ME is that any kind of exertion gives me a dramatic worsening of symptoms called PEM (Post-Exertional Malaise), and my hypermobile joints cause me higher levels of pain for several days, this includes activities like having sex. It’s a problem during these days, since it makes me even more limited in what I can do and the symptoms make my suffering worse. It’s also a problem in a longer perspective, because my ME is severe and I’m going from one episode of PEM to a new one, and I don’t recover completely between the episodes. According to my doctor, this is probably the main reason for why I’m getting more and more severely ill. For every activity that I want or need to do, this is something I have to consider. I have to ask myself if an activity is worth the following PEM and the increased pain.

When it comes to sexual activities, there’s an element involved that makes it harder to make a conscious decision: arousal. Sexual desire and arousal makes me caught up in the moment. Before ME and the worsening of my joint pain, this was a good thing. I want(ed) to be caught up in the moment, that’s one of the nice things about sex. I analyze most things in my life thoroughly, and engaging in activities that make me stop thinking so hard is a very welcome break. But when it comes to sex nowadays it’s a problem, because having sex means I usually end up hurting myself.

The problem isn’t only the physical activity involved. Experiencing arousal of any kind, but especially sexual arousal, means physical reactions like an elevated heartbeat. It means feeling how my body hits the gas and accelerates, something that is more than enough to put me in PEM afterwards. This can happen even if I don’t engage in any kind of sexual activity at all, just the arousal part is enough. This means that I’ve started feeling guilty about not only what I do, but for having any kind of sexual desire. Because desire can lead to arousal involuntarily and that makes my symptoms worse.

Desire with guilt

I sometimes wish that I could stop feeling any kind of sexual desire, because it would make my life easier. Most of the time just the thought of sex is almost impossible to even think, and it is easier then. But then I have days when I’m reminded of that sexual desire is a part of me and it makes me question myself. Am I really as ill as I think I am, as the doctor says I am, when I struggle with my wish for having sex? I know this questioning of myself is just ableism speaking, unfortunately it’s loud enough to make me listen.

I have this idea that people in my condition shouldn’t want to have sex, like I shouldn’t be able to experience sexual desire at all. This in itself is the ableistic stereotype of people with illnesses and disabilities, that we can’t be sexual creatures. It also comes from the idea that severe illness is supposed to be acute, and either you get cured or you’re just counting down do death. During the period of illness, everything is on hold except from surviving. With chronic illness, this doesn’t apply. Life goes on, because living on hold isn’t possible for me anymore. Even though chronic illness is very common where I live, this cultural myth exists and it renders people with chronic illnesses, symptoms and disabilities invisible.

So. I’m not sure where I’m going with this. I’m trying to understand why I feel like I’m doing something wrong just by wanting to have sex, and I guess I just started to give myself some answers.