Books never asked me questions I couldn’t answer

When I was around ten years old, I read a series of books about a girl in the same age. This main character, we can call her Bee, is based on the author and the story took place a couple of generations back but in a neighborhood not that far from where I grew up. I recognized some of the places described in the books but a lot of things were different too, because the story took place around 50 years earlier.

Besides from being a wonderfully told story, these books gave me something that no other book, person or anything in the whole world could give me as a kid. As a ten-year-old, Bee was the only kid I had ever heard about who just couldn’t go to school. For Bee, school seemed meaningless and the way these books portray depression and exhaustion for a kid were so similar to what I experienced. From what I remember Bee isn’t overwhelmed as much as I was as a kid, but the experience of hopelessness are written in a way that hit me hard. The total darkness that hit me every fall, the impossibility of getting up, getting dressed, eating, going to school – I didn’t know what it was. And just like me, Bee just had enough one day when she was in her classroom and the meaningless of life hit her, and she got up and left. Even though my escapes usually were more dramatic, reading about Bee doing almost the same made me less lonely. Because even though no adult or kid could understand what I was trying to explain, I knew there was somebody out there who could at least imagine it well enough to write a book about it. I thought the books about Bee were pure fiction and that made me think that what I experienced was so weird that it was almost like science fiction. It was something that people made up, nothing that happened in real life. This was not a very nice thought, but I still adored these books.

A few of years ago I read an interview with the author and learned that Bee is very much based on the author herself, and the books based on her childhood. No diagnoses were mentioned but from her description of herself, she could very well be autistic. Even though I’m going to refrain from further speculation, I know from the interview that the episodes where Bee didn’t go to school were something that actually happened to the author. I read this interview when I had just really realized that I am autistic and I had started to make peace with the memories of being unable to go to school as a kid, and it was such a comfort. Like my childhood memories finally started to make sense to me.

I think reading the books about Bee was what made me really hooked on reading and writing fiction. It was through Bee that I found that books were the friends who never asked questions I couldn’t answer, but instead gave me a sense of orientation in a very confusing world.

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I’m Your Alien

I will never forget the first time I met with a nurse at a clinic for autistic children. Six months earlier my child had been diagnosed  as autistic and a referral letter was sent to this clinic. Now we were finally here, me and my partner. My expectations weren’t that high but I knew they had occupational therapists and I was hoping that they could help us make the preschool our kid attended more accessible. We had a fairly good cooperation with the teachers but it was hard work to do on our own, and I thought that getting some help to increase accessibility and support would improve my kid’s health by decreasing his stress level.

One of the first things that the nurse told us was “These children rely heavily on motivation to learn new skills”.

I froze. I couldn’t pinpoint exactly why but there was something in this sentence that made me highly uncomfortable. Obviously a part of it was the motivation thing, since it’s a central part of ABA and that wasn’t something we wanted, but there was something more that made me react. There was something in how this nurse talked about autistic kids. “These children…” they were the Others. They were not a part of us.

During the rest of our meeting she talked about autistic kids in the same way, creating a distance between us parents and our autistic kid. At this point I wasn’t clear about that I was autistic, but I had my suspicions. I couldn’t articulate it but I was very uncomfortable and somewhere in my head a thought kept repeating itself: You are talking about me. These kids you are talking about like aliens, I’m one of them. I’m one those people you don’t consider a complete human being.

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.