I read Lucy Hawkins’ open letter to Katie Hopkins at the Guardian this week. Leaving the whole issue aside, what really struck me was this paragraph:
“I have an autistic son. He’s very sweet, polite, hard-working, kind and generally lovely. But yes, he does stare at people from time to time. When we are on the tube, occasionally I have to say to a member of the public that my son is autistic and that I’m sorry he is staring. The reaction is always kind and compassionate.”
It reminded me of when I was first coming to terms with having a condition that is disabling. I did not want to part of the disabled community, I did not want to be referred to as disabled, I did not want to ask for support or be treated any differently than anybody else. I just wanted the world to accept me for who I am based on who I am and not on my ability or inability to carry out day to day tasks. I did not want to explain myself to anyone.
Over years of dealing with the bureaucracy around disability, I feel as if I have been smoothed down like a pebble. Decades of a pressure from the huge volume of water that is The System, I lost my edge. I lost many of my beliefs and I lost the capacity to argue. It took me a while to realize that I had also lost my identity.
I wasn’t me anymore, I was just the sum of my impairments. My relationship with my husband was never considered in any other light than that of a carer. Whether I want to work or have a career was never even an option, I was automatically considered too disabled to be of any use in the work place. Most of the people I dealt with was surprised that I had a family, a daughter and she is never taken into account during any assessment. I am not a mother, a wife or even a person really, just the sum of my impairments.
Nobody ever asked what I could do or what I wanted to achieve. Very little help or support has been offered or made available over the years. Most of the time, the process begins with multiple assessments over months to years and end by handing me a small drop in a bucket, totally inadequate to actually help me overcome the issues what I face, but just enough to keep serious complications at bay.
I found myself always explaining. Needing to justify. Stuck between a rock and a hard place. Having to explain the effects of multiple varying mostly invisible conditions being measured in a static photograph shot of the immediate moment during this assessment on this day, in this minute. And when it changes, which it will do, particularly if it improves, then I have somehow cheated. If I cannot walk at all today, but I can walk to the corner shop tomorrow, then I must have lied about my (dis)ability. Variance is a fickle mistress that everyone but me seem to ignore.
I am tired of being expected to justify either my ability or disability. I am tired of having to say “I am entitled to this blue badge even though today I got out of my car and walked to the front door of the supermarket.” I sometimes wish I can make someone else walk with joints that are continuously shifting, partially dislocating whether I walk, breathe or sit still for too long and see how disabling they find it to be.
I am tired of having to start sentence with “My husband is autistic, I’m sorry that’s why…” or “My daughter is in chronic pain, I’m sorry/that’s why…” or “I have EDS/brittle asthma/chronic migraine/get seizures, I’m sorry/that’s why”.
I am tired of having to justify using a disabled toilet when I don’t have my wheelchair. I am frustrated that I am expected to justify myself. “I’m sorry, I had to get to the toilet quickly because I have a health condition that affects blah blah blah” or “I use the disabled toilet for the adapted handles, I usually can’t flush a standard toilet or open a tap without dislocating a finger and I’d rather not go to that extreme because of a few dirty looks”.
We live in a society that views disabled people like children. We are to be taken care of and protected. I also think people feel that disabled people are expensive, that they cost extra money without making any financial contributions themselves, just like children and as such, only the select few who can prove that they deserve the extra effort and cost is found worthy of receiving support and sympathy.
I am not a child. I do not want to be treated like a child. I do not want to be taken care of, but I would not say no to a little help that would enable me to take care of myself.
There are many levels and types of disability. Some people with disabilities have diminished mental capacity and do need some protection. Some people with disabilities have physical and highly visible disabilities and it is important that they receive the physical support that they need. Others of us, most of us, do not fit into either of the above. People with disabilities do not fall into a black and white category of either “severe physical impairment” or “severe mental impairment”.
I do not mean to be imply that life is easier/society more tolerant for anyone who look like they fit the stereotype of disability or that the stereotype could actually be accurately applied to any individual person.
Stereotypes and these in particular are cardboard cutouts of a hand drawn picture originally drawn by someone who has never actually seen the subject they drew.
I also do not want to participate in the splitting of hairs. Dividing and subdividing people based on how they look or what they can do. We all have our flaws and inadequacies, some are just more visibly limiting than others.
I wish I could make the word stop measuring people against cardboard cutouts. I won’t apologize anymore for my husband not making eye contact or making eye contact for too long. I will not apologize for using a disabled toilet when not in a wheelchair. I will not apologize for going about my day and living life to my fullest capacity. I will not apologize for not living up to preconceptions.
Please do me a favour. Stop leaving notes on blue badge users’ cars when they get out and walk. Stop telling people that disabled toilets are only for those with a highly visible physical disability. (Apart from all else, disabled toilets are also sometimes the only toilet with baby changing facilities, stop harassing parents for changing a nappy in the facilities provided for that purpose). Stop disapproving.
If you want to help out people with a disability, show a little kindness and compassion. Don’t wait for the explanation, justification and apology first.
Even better, why not show a little kindness and compassion regardless of (dis)ability? Maybe the perfectly healthy looking woman walking self-consciously out of the disabled toilet has invisible disability or maybe she had a strong curry last night and couldn’t manage the queue or make it up the flight of stairs up to the cubicles.
Does it really matter?
Lucy Hawking. (2015). Dear Katie Hopkins. Stop making life harder for disabled people. Available: http://www.theguardian.com/commentisfree/2015/apr/30/katie-hopkins-life-harder-disabled-people?CMP=share_btn_fb. Last accessed 7 May 2015.