environment where people are (for the most part) unaware of the nuances within various walks of life, I have been thinking recently about the concept of "enough"; queer enough, disabled enough, radical enough, that kind of thing.
Specifically though I've been
thinking about how people perceive disability and how (usually nondisabled) people perceive there to be a scale from "not disabled" to "disabled" and that if you're not over "half-way disabled" then you're not really disabled.
I recently came to the conclusion
that I was on the autistic spectrum and have been self-identifying for the past few months, and getting to grips with the ways in which I can be gentler on myself, and learn more about myself.
This wasn't something I did lightly,
or without good reason. I have previously been diagnosed with dyspraxia and ADHD which are comorbid with autism and I fit the diagnostic criteria.
This is along with a few people with
aut This is along with a few people with autism diagnoses telling me that I was setting off their "autism radar".
I didn't know autistic people had
radars and I certainly didn't come with one so maybe it's only something you get given when you get an official diagnosis. I'm not sure.
The point is, is that I am on the
autistic spectrum and you'd expect the above evidence to be "enough" for most people to accept that I have autism and that because of this I have difficulties with certain things in my life. As it stands though this isn't the case.
Upon coming to this conclusion I
have been told by my colleagues that I "shouldn't put [myself] down" or that I "don't seem that disabled". Not only does this misunderstand how disability works, it also is a shit thing to say when you yourself are not disabled.
I can almost understand the theory
behind telling someone that they shouldn't let their disability get them down but for the most part I have no fucking time for that. To say that I shouldn't let my disability "get me down" ignores the fact that I struggle with lots of different things every day and that these issues can make my life incredibly difficult.
Now I would normally be labelled
as a "high functioning" autistic but again that doesn't take into account the wide variety and depth that autism offers and is just plain wrong.
Just like there isn't a scale from "not
disabled" to "disabled" there isn't a scale from "high functioning" (not very autistic) to "low functioning" (very autistic).
There are multiple facets to autism
that don't get taken into account at all. There is already a fantastic webcomic by Rebecca Burgess that looks into this which can be found at (http://theoraah.tumblr.com/post/1 42300214156/understanding-thespectrum)
so I won't go into that any more
because I wouldn't be able to put it as eloquently as Rebecca. The point I'm trying to make though my lived experience is very different from most people's perceptions of me and of my multiple disabilities.
Most days I put on a brave face to
the world and, because of internalised ableism, I try to mask how disabled I really am.
Some of this is to make it easier to
move in a society built for neurotypical/non-disabled people but some of it is actually to make my life easier.
Who wants to be stared at on the
bus because you're stimming in an "obvious" or "in your face" way? I'd like to say that I don't mind but in reality I do.
I mind so fucking much that I'm
willing to hold in my stimming until I'm not in public. For the uninitiated stimming can be explained on this site (https://aspergers101.com/autalkzstimming/) and a great guide to the ABC's of stimming can be found on this site (http://par-lafenetre.tumblr.com/tagged/serieabc /page/3).
Basically imagine that you have a
really bad itch that you just have to
scratch so badly that you feel will
make you explode if you dont BUT it was socially unacceptable to scratch it in public. Now imagine trying to suppress that.
It would be pretty unbearable right?
This is how I feel when I have to suppress a stim in public.
Now I'm still figuring out what my
stims actually are because I've spent years suppressing the things
that people told me were "weird"
and at the moment it's actually very validating to explore that but I still try and not be "visibly disabled" in public due to fear, and internalised ableism.
But what has this got to do with
being the concept of "enough"?
I am pretty open about my
disabilities but because I don't always "present" as "visibly disabled" or try to minimise my visibility people tend to have a hard time believing that I'm disabled because their thoughts on disability are shaped by the media, by films,
and by stereotypes. All of these
things exaggerate the "visibility" or "physicality" of disabilities and whilst to some extent autism can present in a "visible" manner, it doesn't always and of course people who can "pass" for neurotypical (some/most of the time) get thrown under the bus.
This is based purely on the
assumption that disability is one facetted, and can be placed on the scale between "not disabled" and "disabled" and it's really, really, really damaging to people's mental & physical health along with peoples every days lives to make those assumptions.
As an example, I am currently going
through a period of questioning my disabilities and the effects that they have on my life.
Now as someone who's recently
come to the autism self-diagnosis It's perfectly natural for me to question what things I have difficulties with and what might help those issues but this has extended to all of my disabilities and caused me to have this rant on Facebook the other day;
"Right now I feel like a broken
person. All that it takes to turn me into a near-quivering wreck is slightly louder than average noise levels for a medium period of time. Fuck that shit. All I want to do is take my earplugs and find the quietest place I can find to hug a pillow. Why the fuck is my brain like this?! Why the fuck can I not function like a "typical" human being?! I might as well just stay at home and be lonely but not overloaded than go to work and earn money and be sociable and enjoy myself."
Should I really feel like a broken
person because I have difficulties with being social, or with slightly elevated noise levels?
This concept of being "disabled
enough" serves no purpose other than to harm disabled people and even if "not disabled" people don't realise what they're doing what I've said has been said enough times that they should have learnt by now.
It's not like disabled people have
been sitting quietly on the sidelines, fingers on lips, staying quiet about their lived experience and the problems they suffer.
From my experience disabled
people spend an inordinate amount of time explaining their disability to people, or explaining why they have a certain disability even though it might not be noticeable from the get go.
Over the past few weeks I have
spent far too much time having to justify my ADHD, my dyspraxia, and my autism and my very existence.
Because of course it's not just my
disability that's being erased, it's my whole identity.
My disabilities might not be the
"worst" that they could be, (and in many ways I'm glad that I have a somewhat "easy ride" in terms of passing as "not disabled" and whatnot) but they are a very intrinsic part of my identity and a very big part of my everyday life.
I live my disabilities every single
day and they don't have an off switch that I can use to give myself a break. Even my days off work when I have nothing other to do than chill out can cause me problems.
Decisions such as "what should I
watch?" or "am I hungry or just bored?" can be very difficult decisions to make and that's before we get onto the "do I take my ADHD meds" conundrum.
My ADHD meds are amazing and
wonderful and help me be productive and live an "adult" life but they don't afford me the ability to relax that much.
My medication is a stimulant so taking it just so I can sit and concentrate on a t.v. show isn't gonna allow me to relax but without it I can be reduced to pausing every five minutes so that I can get distracted.
Like I said, there's no holiday from
disability.
And it's this that has got me so
frustrated about the state of understanding about disability in society right now. I'm speaking as someone from the UK so I can't talk about other cultures/countries but my vague understanding is that it's mostly the same. Why should anyone have to justify anything to anyone else? Especially something like their disability?! I can think of a few reasons (mainly "not disabled" people having an easy ride by not making reasonable adjustments to people they don't see as "disabled enough") but no amount of reasoning makes it ok.
No amount of reasoning makes it a
good thing to police people's disabilities.
As someone who suffers from
depression I am all for educating people about what things like depression and OCD actually mean in the hope that people will stop invalidating mental health issues by using phrases such as "I'm a little OCD" or "I'm totally depressed that so and so was kicked out of Big Brother" but that isn't to say that I, in any way, advocate for policing people's disabilities.
I'm a big believer in the phrase All
Cops Are Bastards because I have seen how much the institutional state of oppression that the police enforce, negatively affects oppressed communities and this extends to my disability politics.
Can we please do away with gatekeepers, disability police, and stop
this culture of "you don't look disabled" and "you're not disabled enough" because it's literally ruining the lives of disabled people by enforcing the idea that if you don't fit into the societally acceptable ideas of "disabled" then you're not and that you don't have difficulties and don't deserve help.
I know so many people who don't
ask for/accept help because they are told by society that they aren't disabled enough to need help.
Hell, even I (at 27) am still learning
when I need to ask for help and when I can and can't deal with certain situations.
It's only at 27 that started realising
that I was pushing myself too hard, too far, and that I was regularly being overloaded by the world around me.
Admittedly this was a mixture of
society and my own desire to listen to music 24/7 but it was mostly internalised ableism and the rhetoric of society that stopped me from realising what issues I had and how best to deal with them.
The only way to deal with this is to
change the fundamental way that people view disability and it's going to take more than a zine to do that but for now it's all I have the energy to do and I'm not too sure I know of anything else I can do.
I have had enough with
"non disabled" people telling me what I can and can't do and whether or not I'm disabled enough.
I HAVE HAD ENOUGH
Yours with Anger
The Finnarchist
I hope that this rambling, jumble of words makes some
kind of sense and that you connect with it, even if you dont agree with all of it. Not matter your reaction though, please copy, share and distribute this. Please get involved in the debate with friends, colleagues, with us at rootsgrowtrees@hotmail.com or over in our community on Imzy Please reference this in your own writings and please take back the media for yourselves.
Roots Grow Trees WILL NEVER promote; sexism, racism,