Wednesday, 13 February 2019

Me Vs My Disability

Many people who are disabled have to walk a fine line controlling other people’s perception of them: the line between looking vulnerable and not yourself and appearing “not disabled enough”.

The way our society treats disable people erases their identity and turns individuals into a single homogeneous being of “The Disabled”. We are stripped of what makes us us and instead represented by walking sticks blue badges wheelchair pictographs and infernal aluminium and grey plastic.

“You don’t look disabled!” and “But you don’t look sick!” are stock phrases that every disabled person will be tired of hearing. The phrase is usually offered one of two ways: disbelief and judgement or an attempt at a compliment.
When offered as a compliment it is to say “you don’t look how I think a disabled person looks” or “you don’t look pathetic or weak”. This is part of erasing our identity and assuming that all disabled and chronically ill people fit into a single mould. It also assumes that the goal and the ideal is for the person to not be disabled and so be successfully looking “not disabled” we are achieving success. It also ignores the fact that regardless of how we look we are still disabled, we have gone to great effort to look our best but that doesn’t mean we negate our disability.
When the phrases are said with animosity or judgement they fuel discrimination. The implication is usually that in claiming disability status, and especially in making use of any support or assistance, we are lying, faking or acting fraudulently. Again this comes from a place of not conforming to views of what a disabled person should look like or how they should act. It also ignores the fact that you are often only seeing disabled or chronically ill people on good days, not on the bad days or at times when their disability limits interaction: if a disabled person can’t every make it into a pub with poor accessibility some people may draw the conclusion that disabled people don’t go to the pub. That is to say, enjoying a pint with their friends doesn’t fit the picture of disability which has been created in their minds.
photograph showing a person from the waist up wearing dungarees and a black t-shirt, they have grey lipstick, glasses and green hair. They have tube bandages on both elbows. credit Chiara MacCall

The impact of this can be devastating from verbal and physical discrimination and abuse, an unwillingness to improve accessibility to place out of a belief that disabled people won’t use certain facilities, to privation when benefits aren’t awarded or long term health issues and even fatality if medical treatment is denied.
One of the often unspoken casualties of this attack on how disabled people should look and behave is the mental health and well-being of a disabled person. When you are reduced only to one aspect of your life, and that aspect is often difficult and unpleasant or comes with negative associations, it can wear away at a person’s sense of self, their confidence and self worth. Additionally being constantly questioned and doubted as to the validity of their experience can cause guilt, confusion, stress and paranoia. The mental health cost of the general public not really seeing disabled people as people is massive.
Photograph of a person from the waist down. They are seated and are wearing blue short dungarees over a black t-shirt. They have black skeleton print knee socks on, camo-print K-Tape on their left knee, tube grips on their elbows and support gloves on. Their hands resting on a walking stick. credit Chiara MacCall
However there is a balance to be struck. If we see only the individual and erase their disability, we may create more inequality by not addressing the access and care needs of disabled people. If we see only the disability we erase their identity along with any other characteristics and difficulties they may face (because a disabled person may also be a black person, a Muslim, gay, trans, poor or other minority characteristics).

I have writtenpreviously about being seen as a vulnerable adult. This continues to be an issue especially following a recent burglary that has left me very aware that I am to many people who see me a vulnerable person. To those who only see the disability I am an easy target (if their minds lead to nefarious activity any way). That’s a very difficult position to find yourself in. I don’t want to be viewed as nothing more than an equation that disabled = vulnerable yet I must face the fact that not only are there people who view me this way but that they aren’t entirely incorrect.
What could I do really if there was an intruder in my house, especially on a bad day where I was struggling with fatigue or pain. Could I fight back if attacked? Could I defend myself and my house. The answer is, probably no. Despite the fact that I have, prior to my disability, years of martial arts training is inconsequential. It doesn’t matter that for somebody with my health conditions I am relatively strong. The majority of time I am a vulnerable adult and I know that anybody seeing me in the street or, gods forbid watching me exit and enter my house with my walking stick, could conclude that I am an easy target.
Understandably this is a very difficult concept to deal with. Nobody likes to think of themselves as a target or feel unsafe in their own home. But worse than that it strips me of my identity and personality. It reduces me to that concept of disabled and nothing more.
photograph that is blurred showing motion. A person is walking away from the camera wearing a backpack and using their walking stick. Credit Chiara MacCall

But I am more than that. And I want non-disabled people to know that. I want non-disabled people to start to look beyond the sticks and chairs and hearing aids and to see real people and to understand that if somebody saying they are disabled even if you can’t see any obvious indicators, even if they don’t fit the traditional narrative of what disability looks like, that maybe they are disabled and maybe there is more to them than that disability. Being disabled does not erase my gender or my sexuality. It does not erase that I like heavy and eclectic music. It does not erase the fact that I love art and books and food. It doesn’t erase that I enjoy being active and singing and horses. It doesn’t erase my political opinions or activism.

photograph showing an arm stretching up toward the sky with a crane behind it. The arm is hyperextended and the elbow is at an unusal angle and covered by a tube bandage. The fingers are splayed wide. Credit Chiara MacCall

More than that those many things and more that make up who I am do not in any way make me less disabled, cure my disability, make me a liar, make me a faker, erase my disability or my experience as a disabled person.

That’s what the photographs illustrating this article are all about. They are a collaboration with documentary photographer Chiara MacCall who uses her lens to show who people really are and who has a great talent for showing what is beneath the surface of her subjects. I spent a day in London with Chiara being disabled and being me. We ate good food, talked politics and social justice, looked at art both in galleries and on the street and talked about what it was that made us who we are. I was not “born disabled”. I gained my disability in my late 20s. It has taken a long time for me to accept that this is a part of who I am, that it can be a part of who I am without erasing my personality, identity and the sum of the experiences I had had up until that point. Just as taking a dance class when I was 7 shaped who I am today, so did becoming disabled when I was 27.

My self identity does not invalidate my disability and my disability does not invalidate me.

Photograph showing a person wearing dungarees a black t-shirt, black skeleton print socks with various joint supports and a walking stick stood in front of a large piece of street art showing an orange skinned femme figure covered in flowers. cred Chiara MacCall

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