Invalidating My Vulnerability

I’m scared, like usual. This time it’s because I’m about to apply for permanent income compensation and this is super difficult to be approved for, meaning that I have to prepare for many years of fighting with lawyers and doctors. It’s a process with a big risk of a permanent worsening of my disease (Myalgic Encephalomyelitis, ME) and it’s a very painful reminder of how vulnerable I am. Since so many people still don’t get how awfully harmful these procedures are, I want to write about this openly. I want to write about it to give people a better picture of what austerity does, since that’s one of the few things I can to to contribute to a political change. However, I’ve come to a point where I don’t think I can, because the reactions I get from people are so painful to read.

One of the most common reactions I get is that people give me advice I never asked for. Bad advice. Advice suggesting that I do something that is either totally inapplicable or very basic, meaning that I’ve already thought of it. This is terribly hurtful and even though I’ve spent a lot of time thinking about why and come to some conclusion, I’m still having a hard time grasping it. The other day though, something hit me: It’s about denied vulnerability.

When people give me advice I didn’t ask for just because I’m trying to describe and understand my reality, I feel invalidated. I’m trying to close in on my own vulnerability and fear, trying to articulate it, undrstand it, make room for it, and all that bad advice become an obstacle to that. Because if your simple advice actually were good solutions, then I wouldn’t be this vulnerable.

The abled world is constantly trying to deny the subordination and vulnerability of people like me, by pretending that disabled people and chronically or long term ill people aren’t treated as bad as we are. When people deny my reality to the point where I can hardly see it myself, it makes it very hard to deal with. I invalidate myself and can’t understand or process my feelings.

I live in a place where a lot of people still think that we have a safety net if you get ill or disabled. We used to have that but it has been crumbled more and more for around fifteen years and by now, there’s really not that much left of it. I grew up being taught that we have a safety net and unlearning that and realizing that no, it’s not me who’s ill the wrong way or not really disabled is a very difficult process. I’m trying to close in on my own vulnerability and make that elusive sense of exposure to danger more tangible and less confusing, but when people deny my reality, it gets too hard.

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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.

I just want to be allowed to be scared and sad without being brilliant

As I become more and more severely ill with ME, it’s getting more difficult to write. I can’t write that much anymore because it worsens my symptoms too much. Unfortunately, it means that I’m detaching myself from the world more and more, because my only connection with the world is my writing.

I’m thinking about this today, because I want to interact with my friends. I want to but I can’t grasp my thoughts, meaning I can’t say (write) anything analytical or smart. I want to tell people that I care about them, that I miss them, that I value them, but I’m so sad, so ill, so scared and so tired that I don’t know what to do with myself. So much of my social life is built on me saying smart things, and I have nothing insightful to say about anything today. It hit me so hard last night, that I’ve ended up in a situation where I think that I don’t have a right to talk about how hard my life is, and how sad and scared I am, if I don’t do it in an intellectual kind of political or philosophical frame. I’m trying to break free from this idea (that’s why I have this blog, I guess), but honestly, every attempt is making me so ashamed.

It’s not exactly helping that certain people are obviously terrified when I try to allow myself to be vulnerable. Not the people that I consider my friends, but some other people. Even though these are a minority, it affects me really hard. I caught myself daydreaming about being allowed to be sad and scared. It’s… I don’t know what. I’m sad and scared all the time, I’ve been terrified all of my life, and I still haven’t learned to allow myself to be sad and scared without feeling intense shame about it.

I want to write reflecting things about this. I want to write about how ever since I became ill, since it became more obvious to people that I’m disabled, it’s like people are blaming me like hell every time I’m open about how political decisions are making y life hell and how bad I feel because of that. But I don’t have the energy to follow my own thoughts. My head is a mess.

And I can’t even cry.

 

Gap

My relationship to my partner has been better for the last couple of months, and I’m very happy about that. We have sorted some things out and some external factors have changed and that also seems to make our everyday life easier. However, sometimes I experience some sort of gap between us. Like right in this moment.

There’s too much going on this week. Special things for my kid in school (a small concert and a theme day about human rights) that we found out about very late, meaning, we’re working our asses off to make visual material and prepare our kid. On top of that we have some healthcare stuff for me that my partner need to take me too and preparations to be done before that. My partner has done a big part of the preparation work for our kid because I haven’t been well enough today, so he’s kind of stressed out. I feel bad for not being able to do more but I also feel bad because this is the kind of situation that worries me a lot. Everything has too work smoothly according to our plan, otherwise it’s quite likely that things will be chaotic for all of us. The thing is, things never run smoothly. There will be some kind of problem that needs to be solved and I know that I don’t have the capacity to handle it, but I have to solve certain things because otherwise my kid might end up suffering.

This is not how I prefer to organize things, but this is happening mainly because my kid’s school forgot to inform us on time. Still, we have to solve this situation.

I worry. I need to just focus on dealing with my anxiety. My partner thinks that since he’s doing a lot of the preparation work with our kid, I get to rest since I’m done with most of the preparations for my doctor’s appointment. But I’m not resting. I spend my time planning exactly how to deal with every minute of Monday and Tuesday, trying to predict everything because I don’t have room to deal with any kind of demand that I’m not prepared for. In these kind of situations, I always end up over-exerting myself and that means that I also have to plan for being in a terribly bad shape until Friday.

I’m trying to focus on just getting by the rest of the day. Tomorrow, I’ll be drained of energy from just dealing with the chaos that this kind of tight schedule is causing me, and my partner won’t understand why. It will be a huge gap between us but we’ll be too busy and exhausted to sort things out.

 


As usual, I’m not writing this to get any practical advice and comments including advice won’t be published.

ME/CFS Researchers Don’t Understand Autism

Content: This post includes mentioning of ABA, an autism cure and a lot of ableism.

 

 

Fellow autistic readers, I need your help.

The last couple of months, I’ve been made aware of that some researchers who are originally researching the disease ME (Myalgic Encephalomyelitis), are now interested in autism. This is very troublesome because from what I’ve read, they don’t understand autism at all and their misconceptions can turn out to harm autistic people.

A couple of days ago an article called Treating Autism and ME/CFS: Could One Drug Do Both? was published at the Open Medicine Foundation’s website, and it includes a number of troubling statements. For instance this:

ASD is not chronic fatigue syndrome (ME/CFS) but some similarities exist. Both diseases affect cognition and sensory processing, cause problems with stimuli, cause significant social withdrawal, and are associated with increased levels of oxidative stress, reduced glutathione levels, and a Th2 immune response shift.

The rest of the article goes on as expected, with a number of biomedical facts about autism and ME, but with no further definition or accurate description of what autism really is. From what I can tell, the researcher and/or the person who wrote the article both seem to consider autism a disease defined by a number of behaviors, like mutism and social withdrawl mentioned in the quote above. There’s no sign of any awareness of how heavily autistic people have criticized this understanding of autism. There’s no recognition of all the other aspects of autism, like hyper-empathy. Autism is considered a disease and therefore something bad, and demonstration of less autistic behaviors is interpreted as improvements.

The scores indicated that the children’s social interactions, language, and restricted and/or repetitive behaviors all improved.

Further on in the article, we have parents to autistic children being interviewed about how horrible they find their children’s autism. The parent perspective is of the usual tragedy kind that tends to be standard from Autism Parents, but no actually autistic person is being interviewed in the article.

This is bad. Terribly bad. I fear that the researcher’s misconception about autism and lack of awareness of that historically, attempts to “cure” autistic people have turned into so much harm and will lead to us being harmed again. There are so many testemonies out there of how ABA, the therapy that is still widely used in attempts to teach autistic people to behave less autistic, gives people PTSD. Behaving more like allistic people doesn’t make autistic people less autistic, our brains are still wired the way they are. What it does mean is that autistic people spend a horrible amount of energy trying to fit in and be approved, instead of punished.

I’m devastated by this. I’m autistic and I have ME. I want to be cured from ME but I want to continue to be autistic, because I don’t want to change my personality. For a number of reasons, I’m drained and have very little energy at the moment. I can’t fight this on my own. Those of you who want to protest, please do.