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.

 

I Was Autistic Even Though Nobody Knew About It

Content: This post includes ableist statements and mentions a wish to die.

 

 

Damn those kids whose parents can’t raise them properly! All those kids who can’t sit on a chair and listen like normal people.

I remember
standing up, leaving the room and running for my life
running for protection from the social rules I didn’t understand
the voices that I couldn’t process
the language that wasn’t mine

You need to stop doing this! Stop leaving the room every time you don’t get things your way!

I remember
the sounds turning into a traffic jam
waiting for processing, but I’m too slow
the load of unprocessed sounds is turning into noises pushing me to the ground
to the meltdown

Why haven’t you done your chores? You have arms and legs that work totally fine!

I remember
staring at the door, trying to open it and get the vacuum cleaner
and I just can’t
because of the noises, smells, movements, words and people from earlier today
everything repeating itself, over and over, and I still don’t understand it

Why aren’t you in school? You’re only allowed to stay home if you’re ill!

I remember
wishing my life was over
being so full of noises, pictures, words, feelings, confusion
desperate from being forced into a world I didn’t understand
rather dying than failing to be a real person one more time

 


We don’t need more awareness of that autism exists, we need real knowledge about what life is like for autistic people. We need to be accepted for who we are, not forced to try to appear as allistic as possible. We need the world to listen to autistic people, and to learn about autism beyond stereotypes.

You were everything that I didn’t dare wanting

So Liz,

Here we go again
the memories are back. The memories of… it. The sense
the sense of not grasping, not understanding, but desperately wanting
the memories of falling

“Come on now try and understand
the way I feel under your command”

You probably didn’t know how much I was under your spell
you were the music
I should have been the lyrics
but my words were lost, evaporated, or maybe I never had them

You were everything that I didn’t dare wanting
I wanted you anyway
if the night belong to lovers, why did we never get one whole night together?
why didn’t I take it?

We had desire and hunger, but there was no disguise
I knew that my lust was love
but loving you meant facing my autistic self
the self without words

Quoting a song is silly
but my memories of you are music, rhythm, heartbeats, breathing
I had no words for what was happening then
I still don’t

“Take my hand as the sun descends
They can’t touch you now”

I had already taken the step out in the middle of nowhere
I was already falling
if we had held hands and fallen together
maybe we could also had landed together

I never found my words, but my demons got me
when the disease hit me
I thought it was a punishment for what I had wanted and almost asked for
for you, for authenticity, for being autistic

For a life without disguise