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.

Autonomy, Vulnerability and Safety

Content: This post includes mentioning PTSD, vulnerability and harm done by paternalistic behavior and lack of respect.

 

My ME (Myalgic Encephalomyelitis) has become worse during the last year and I’m therefore applying for help with some everyday chores. The days when I’m not able to make myself a simple snack are becoming more and more frequent and my partner can’t take care of me as much as needed, because he has to take care of our kid and work.

Applying for more help has made me think a lot about what I need to make this help work and it’s clear to me that I need people to be very careful about respecting my boundaries. If somebody is going to help me, I need that person to make it their first priority to make sure they help me with what I communicate, in the way I need it to be done. This might sound so obvious that it’s redundant to state, but in my experience it isn’t.

During the last years so many people (healthcare professionals, my mom and people from my social insurance agency) have demonstrated that they don’t respect my boundaries at all, and I’m hurt by it. For some reason it seems to be a common misunderstanding that when you are helping a disabled person, you are automatically entitled to the person’s private information and to run the person’s life. It doesn’t matter if I tell people that their ‘help’ is actually just making life more difficult to me, just by claiming that they are trying to help me they seem to think that they are free to do whatever they feel like.

When I say that this paternalistic behavior has hurt me, I mean that it has done some serious harm. I’m scared of healthcare professionals. I have nightmares and I’m hypervigilant in most situations where I need help. A big part of my PTSD stems from situations where I’ve been a patient, a child or needed help in some other ways. Also, healthcare has made my ME more severe by harmful diagnostic procedures, tests, assessments and treatments and nobody is willing to take any responsibility for it. Healthcare professionals act like it’s my fault that I have such a weird disease that they refuse to learn anything about, and having EDS and being an undiagnosed autistic doesn’t exactly make me less weird to other people.

When I think about how I could make receiving help work (and not just worsen my ME and PTSD), I think about how I need to have autonomy. How I need to be in charge and by getting practical help I become a subject that cares for myself. I don’t want to be taken care of, I just need people to practically do what I can’t do. I need my knowledge about myself to be respected. I need to be seen as the expert. Given the background I just accounted for, these needs (that are a lot about restoring my integrity and sense of humanity) make a lot of sense to me.

Then, every evening as night falls and I’m waiting to fall asleep, something else surfaces. I stop thinking about practical solutions, and I’m too mentally exhausted to think one more analytical thought. Then I’m just longing and hurting. I’m too exhausted to defend myself against people who are not respecting me. I’m ashamed to write this but then I want to be protected. I long so hard for someone to comfort me, and it feels so totally impossible to ever allow it again. My deepest, most shameful desire isn’t sexual – it’s about feeling safe enough to allow myself to be vulnerable in somebody else’s presence.

Initially, these desires seemed contradictory. Daytime I fight to defend myself and avoid situations that make me vulnerable to other people’s harm. At night, all I wish for is to be able to be vulnerable again. However, these aren’t contradictory needs. It hit me last night that being deprived of things like integrity, respect and a fundamental sense of safety means I was also deprived of the privilege of trusting people. Longing for autonomy and longing for vulnerability isn’t two different things, it’s two different sides of the same need: safety.

Navigating Services Is Hell Because of Ableism, Not Because of Autism

Dear parents of autistic children, we need to have a talk about why it can be so hard to be a parent of an autistic kid.

A couple of days ago I tweeted saying that parents should stop blaming their autistic kids for everything that’s hard in their lives, and somebody responded saying that navigating services for disabled children is a nightmare. Since I’m not only disabled myself, but also have an autistic kid, I know this very well. Because no, it’s not enough that most services offered are useless, me and my partner are expected to run to a hell of o lot of meetings to get information about certain services. It’s the same information over and over, about services that are of no use to us, but they work as gatekeeping to other kinds of services (the latest is that we’re applying for services for me, because of worsening of my ME and that means that my partner has to go to one more meeting about services for my kid). As if it wasn’t enough that we have to spend so much time and energy on useless and inaccessible meetings, getting what we actually need seems almost impossible. My kid needs an accessible school, but that’s nobody’s responsibility. My kid needs accessible healthcare for his astma and hypermobile joints, but that’s really not a service that exists. I know very well that navigating services can be very demanding and frustraing.

But. That’s not because our child is autistic.

The reason for why navigating services is hell is because of an ableist society who has created a very ableist system of services for disabled people.

How services are organized differs between different countries which means that what I will describe here might not apply to all of you, but I will give you a couple of examples of how, where I live, services for disabled people are organized based on ableist ideas.

  • Services are based on the idea that disabled people, especially autistic children, should aim at making them less deviant.
  • Disabled people need to prove that we need the services we apply for, while people without disabilities have access to plenty of services that they get without having to prove their need for them. Because of ableist propaganda claiming that disabled people cheat a lot to get services we really don’t need, it’s seen as normal that service applicants have to exhaust ourselves and give up our integrity to apply for, and then maintain services.
  • The application process for many kinds of services means a loss of integrity. A whole bunch of people will demand access to medical records, ask very personal questions that really have nothing to do with the service (sex life, genitals, toilet habits) and sometimes demand to inspect and scrutinize the service applicant in intimate situations such as showering, toilet visits etc.
  • Bureaucracy isn’t well coordinated and different institutions are responsible for different kinds of services, and they don’t communicate with each other, meaning that service applicants have to repeat the same information many times and coordinate infromation between different institutions. This takes a lot of time and energy and usually means that a person without disabilities has to be involved in applying for and then implementing and maintaining services.
  • A lot of autism experts and other people who claim to work for autistic (and other disabled people) defend this system, basically telling autistic people that we lack judgement when we protest against this system.

This system makes it very hard to be disabled and care for a disabled child, but it doesn’t have to be like this. The fact that this is what it means navigating services is a consequence of political decisions. Ableist decisions. Because if disabled people weren’t seen as cheaters and burdens with less value that non-disabled people, we could organize a more accessible society where services was administered in a different way. A respectful and easier way with focus on integrity and autonomy.

The answer doesn’t help if I don’t know the question

I’ve been writing about Liz recently. The memories of her have been haunting me, partly because I miss her, partly because there were a couple of things about our relationship and what happened that I could never grasp. Feeling confused in relationships is so common to me that I take it for granted, however, with Liz my confusion was worse than usual. (I have a problem with delayed processing, which means that it takes time for me to process and understand interactions. I come across as indifferent or cold when I don’t understand what’s going on in the moment.)

Yesterday when I was writing about her, one of the knots untangled. I could finally phrase a question that I’ve had the answer to for a while, but since I didn’t know what question I was asking myself the answer didn’t help much. My post from yesterday is called Would you love me as disabled? and that’s what I’m wondering. The very painful answer is no, I don’t think she would. At the moment I can’t say if this is a rational assumption or just my internalized ableism talking, but I don’t think she would have had much feelings at all for the disabled me.

Being with her was exhausting because I was so exposed, so bare, and still I tried to keep up the appearance of being the non-disabled version of me. It was an impossible mission and that’s probably why I froze so many times.

 

Executive Dysfunction and Panicking from Demands

Since a couple of weeks back, I’m off my ADHD meds. It’s not because they didn’t work, but because of side effects and a complicating condition. Before I quit taking them I had started to think that maybe they don’t do any good, maybe I don’t even have ADHD. Well, let me put it like this: They did work. I do have a problem with executive dysfunction. I really hope that I’ll be able to start taking them again but I don’t know how things are going to turn out or how many months it will take before I can start again, if I ever can. In the meantime, I need to cope with executive dysfunction more actively than I’m used to and therefore I’ll start to unpack what executive dysfunction means to me.

One of the things that hit me really hard when I went off my meds is how overwhelmed I get from any kind of demand. It’s not only that it’s way harder to come to a point of focus and start working on a task, the problem is just as much how it feels before I’ve reached that point. Before I actually can start to do something, I need to organize my messy thoughts and my lack of context. Considering the fact that I’m literally thinking of around 8-12 different things at the same time, this is a big task. I forget what I’m thinking about and I have to work myself up to try to grasp it again. When I finally reach the point of knowing what I’m about to do, why, how important it is and how I’m going to do it, I’m exhausted. Since there’s no spoons left to actually do the task, I tend to panic.

I have strategies and tools to make this easier, like task lists that are organized to give me information about priority, why and how I should do different tasks. It helps a lot and I’m very happy that I’ve spent so much time on improving this way of working. It helps me further to acknowledge that this orientating process doesn’t happen automatically to me, that I need to take this into account when I try to balance activity and recovery. However, it doesn’t make the executive dysfunction go away. Also, it doesn’t heal the wounds from all the times people have accused me of being unmotivated or avoiding demands. Needing to spend so much energy on just orientating myself enough to know what to do and how to do it is a big source of fatigue that most people who don’t have the same experience won’t understand, and that’s very painful.

No matter if I can start my ADHD meds again or not, I need to cope with the grief of being so misunderstood for thirty years, because now I’m reminded of it every day, several times a day. I still don’t know how, but I guess I’ll figure that out.