The Parent Movement and Self-Diagnosis

Content: This post contains ableism.

 

Recently, I’ve been getting som pieces of hope regarding the movement of parents to neurodivergent kids. I’ve seen autistic parents speak up about the ableism within the parent movement and even though it has mostly been met with silence or total dismissal, I thought that maybe some kind of change is happening. Then I got a reminder of how bad the situation actually is.

Where I live, most parents to neurodivergent kids don’t know what ableism is. There is no organization for self advocacy for autistic or neurodivergent people, only one for people with specifically Asperger’s syndrome and they are very ableist themselves, not wanting to have anything to do with people with people with intellectual disabilities or people with what they consider a too big support need. The big discussion point in media is if autism and ADHD really exist or if it’s just made up by Big Pharma and lousy parents who can’t control our kids. Autism Parents are not used to being questioned by autistic adults and the parent movement is so permeated by ableism that it seems impossible for most of the parents to even imagine advocacy without ableism. Neurodiversity isn’t only misunderstood, most Autism Parents haven’t even heard of it.

The other day, I was also reminded of how the concept of self-diangosis is basically non-existing where I live. Despite the fact that there are multiple factors that will decide if a formal diagnosis is possible or not, even so-called self-advocates often refuse to see the need to recognize self-diagnosis. I came out as a self-diagnosed autistic and was basically told that it couldn’t be recognized and it hurt. It hurt more than I expected. It hurt because even if I wasn’t expecting miracles, I had some hope for this specific context and group of people. When a person in charge declared that they didn’t care at all about all the reasons why a formal diagnosis isn’t possible for all autistic people, I was a bit disappointed.

Because how can you declare wanting to empower neurodivergent people but only those privileged enough to get a formal diagnosis? How can you refuse to care about for instance the racism, ableism and sexism that keep a lot of neurodivergent people from being diagnosed? I don’t understand how anybody can defend throwing some people under the bus in a struggle for empowerment and against oppression.

This is so typical and one of the reasons for why I’m creating more and more distance between myself and most other parents of neurodivergent kids. I work hard on dealing with all my internalized ableism, not only for the sake of my kid but also for my own well-being. Being around Autism Parents and the rest of the parent movement is too much of a reminder of why I should hate myself.

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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.

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.

Ableism From the Outside to the Core

In my last post I wrote about ableism in romantic relationships, with an example of power dynamics within the relationship. With only one example it was by no means an exhaustive account for how ableism can operate within romantic relationships, and at some point I want to elaborate more on this topic. Before I do that, I need to sort out some thoughts on how ableism can affect a romantic relationship on a different level.

I have spent a couple of years trying to wrap my head around a specific experience of how an ableistic society made a relationship impossible. As some readers of this blog probably have noticed, I was once in the beginning of a relationship with someone that I refer to as Liz. It’s probably annoying to some people that I’m a bit cryptic when I write about her, but I have to in order to protect both myself and her. Anyway, the story about Liz took place a couple of years ago but it’s not until recently that I could begin describing to myself what actually happened.

I was deeply in love with her. She told me she loved me and wanted to be with me. I froze and couldn’t tell her how I felt. She thought I was indifferent. The truth was that I couldn’t give her what she wanted in terms of a relationship, because of my (and my child’s) disablities. Because of an inaccessible, oppressive society that puts up obstacles and deny chronically ill and disabled people adequate help and healthcare. So I let her go, I didn’t even fight for her. Instead, I felt ashamed to the point where I thought I was a disgrace to… well, I don’t know to what. To love maybe, because how could I claim that I loved her when I didn’t even give a relationship with her a fair chance?

And yes, I’m still being secretive about the details necessary to make sense of what happened, simply because I still can’t grasp the reality of ableism. I’m hovering over a specific thing here, a part of reality that I can’t make myself write in plain text. Not yet.

The point is that romantic relationships are affected by ableism in more ways than just as a form of power dynamics within the relationship. The fact that a specific manifestation of ableism comes from outside the relationship doesn’t mean that it stays there. My experience is that it can permeate what I feel, how I act and what I communicate to the point where it’s playing the leading part, without me detecting it.

Why I’m an Outcast: Dehumanizing Logics and Parent Perspectives

I recently tweeted about that I’ve become an outcast among parents to disabled (especially neurodivergent) children. From being someone whose articles were read, shared and praised by other parents, I’m now mostly ignored. Not that it’s unexpected, I knew I had this coming.

A couple of years ago when I started to engage in a particular organization, I was a bit uncomfortable with some of their vocabulary. However, I actually thought that their rhetorics was mostly a consequence of not knowing better and that I could contribute to a change. I was fairly new in the disability community, and naively enough I thought that my experiences as disabled myself was going to be considered an asset. I had a lot of internalized ableism that I had never dealt with and I think that made me less critical, even though I was never comfortable with the ableist views that were presented.

One of the things that this organization promotes strongly is the perspective of parents. They are centering parents’ views of poor healthcare, poor schools and so on, instead of promoting the voices of disabled people. I have a huge problem with this, and in this post I will dig deeper into three aspects of this problematic perspective.

The first one is that even though many of these parents are really suffering from having to fight very hard for the rights of their children, centering their own experiences leads to dehumanizing of disabled people. Parents may be depressed, worn out and not being able to work because of all the fighting for accessible education and healthcare for their children, but that is not the core of the problem. By focusing on how much parents are suffering the main issue is obscured. Because the main issue with ableism is that disabled people are seen as inferior to people without disabilites and are therefore denied access to basic human rights such as education, health care and communication.

When I see these parents advocate for better healthcare for their disabled children by arguing that parenting a disabled child is basically ruining their lives, not only are they stealing focus, they are also talking about disabled people. Since they rarely promote the voices of disabled people, but instead ignore and sometimes even try to silence disabled adults that question them, they are contributing to making disabled people objects to talk about, instead of partners to engage in a conversation with. I believe that both these aspects are obstacles to an actual change.

The third issue is that a a lot of these parents are disabled, just like their children, but that doesn’t change the perspectives they are promoting. It really doesn’t matter if they are autstic or not when they advocate from a neurotypical perspective. When they talk about disabled children as they were some sort of aliens, completely different from themselves, they are promoting ableist views. Over and over the same narratives are presented and that includes realizing that something is wrong with their children. This insight is usually followed by statements about how they never chose for their child to be autistic (or more likely, “have autism”). The common denominator of these stories is that their children’s disabilities are portrayed as tragedies, instead of focusing an the actual disaster – ableism.

The situation for parents of disabled children can be very hard, but that doesn’t legitimize for parents to reproduce the dehumanizing of disabled people. Change will come from refusing to conform to dehumanizing logics, where disabled people never get to be the center of our own experiences. As sad as it is to see parents of disabled children reproduce the problems they claim wanting to fight, at least I know my own principles. I am rather ignored than being a part of you, if my belonging to you means allowing you to treat me as inferior.