In terms of being autistic I have been out pretty loud and proud for a while now. I did a bit of a coming out. I added the Âû as a suffix to my name. I made a big social media coming out post, I posted more Autism related information on my personal Facebook page and twitter account, I started an autism focused Facebook page. (you can see it here). I posted a couple of blog posts particularly focused on it, here, here and here are examples.
What I am coming to address now though is the question of okay, you’re Âûtistic but what about disabled? Is that a thing? Is that something you need to consider? It has become a fertile ground of thought over the last little while. A period of considering this has been percolating away in the back of my mind since a comment thread on a Facebook post. The question of is Âûtism a disability or isn’t it. I had been maintaining a definitely not attitude however a friends made a comment that got me thinking. Her question was on the issue of the model of disability in question.
What do I mean by the model of disability? Well there is the medical model and there is the social model. Possibly there are more but I will just consider the two at this stage.
The medical model of disability is a sociopolitical model by which illness or disability, being the result of a physical condition intrinsic to the individual (it is part of that individual’s own body), may reduce the individual’s quality of life, and cause clear disadvantages to the individual. – ref Wikipedia
So clearly this model is focused very much on the condition and the state of disease, disorder or physical state to be the driving factor of disability. I have been more than unwilling to accept that Âûtism fits within this model. I have not been willing to accept that a state of neurology is the key thing contributing to the quality of life I or another experiences.
The social model of disability is a reaction to the dominant medical model of disability which in itself is a functional analysis of the body as machine to be fixed in order to conform with normative values. The social model of disability identifies systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) that mean society is the main contributory factor in disabling people. While physical, sensory, intellectual, or psychological variations may cause individual functional limitation or impairments, these do not have to lead to disabilityunless society fails to take account of and include people regardless of their individual differences. The origins of the approach can be traced to the 1960s; the specific term emerged from the United Kingdom in the 1980s. ref – Wikipedia
This is a totally different idea. This is an idea that I can begin, and indeed do, think about. This places the idea of disability much more into the realm of societal attitudes, actions, values and norms. This is where it is really worth asking the question. Is being Âûtistic congruent within this social model of disability.
Anyone who has spent any time following either this blog or my Facebook page Proud Autistic Living will in fact know that I totally reject the labels of disease and disorder in regard to Autism. I also reject that there is any need whatsoever for a cure for autism. I reject the deficit model that I as an Âûtistic person am somehow less than an allistic person. I hang tenaciously to the idea of #DifferentNotLess.
The result I have come to here in considering all this is that I am in a position where I have rejected the idea of being disabled, in so doing I have internalised a level of ableism and privilege. Whilst never outwardly being ableist and never intentionally having an attitude that disability is a lessor state of being, I did in fact have this internal something going on that was continuing to reject the disabled label for myself. As though taking on that label would make me less.
I believe it is time now to reject that internal ableism. It is time to own my own disabled status.
Yes I do have a disability. No you can’t see it. You may even want to disagree and say no you are not. But the evidence is in. The evidence does indeed say that I do have a disability when considered in light of the social model. Evidence you ask, what evidence?
- Prolonged bullying as a child
- Prolonged social difficulties
- Difficulty to hold gain and hold employment
- Difficulty dealing with sensory input
- Difficulty with large groups
- Extreme difficulty working in team situations
This list really just represents a small example of the evidence available. There is much more that could be analysed and considered in thinking about this but it is not necessary.
As I sit and right I am having a moment of epiphany, a moment of, if you like, coming out. Coming out disabled, it seems such a strange and odd thing to do doesn’t it. But for me it is in fact a needed thing to do. Within me, there is a need to acknowledge that yes, I am disabled, it may not be a medically derived disability but it is a disability nonetheless.
As I have typed these words it is as though a moment of release has occurred. A moment of freedom almost. In attempting to explain this I can only really say that there is a level of permission deeply felt within. What I mean by that, I think, is, that I now sense a freedom or permission to acknowledge those things that my disability prevents me from doing, whether that be doing at all or doing in a limited only way. Yes, it’s now possible to say and actually believe, that saying no, I am not able to participate in this due to my disability is not a failure.
A thought, I am not in fact socially inept or incapable, but, socially disabled.
The wonderful thing here is that this is not in fact a negative thing, it is a freeing and wonderful thing. A thing I can now own. I was not in fact expecting to have this freeing sense. I was expecting, actually no, I don’t think I know what I was expecting in terms of feelings.
Yes I am proudly Âûtistic and I am disabled. No I am not sick, I do not need a cure, I am not disordered. I am not less.
To be disabled is not a factor of being less. It is a factor of being different.
To be disabled is not a destroyer of quality of life or make me any less worthy or deserving of full and complete living of my life.
Yes I am disabled, and yes I have much to offer, much to give, and I will in fact suck every last bit of marrow of this thing called life.