I’m Disabled, Shout It From the Roof Tops

Recently on Facebook an interesting discussion came up on one of the groups I am in.  This is a group for people who have had total hip replacements at a younger age than normal.  Someone posted the following question:

‘If you have a THR (total hip replacement) and are doing great, are you still considered a person with disabilities?’

One of the first responses was, ‘I have NEVER considered myself disabled’ and there were quite a few more like that.  A lot of people being very quick to dismiss ever having been disabled at all made me feel quite sad.  As a society do we see it as so shameful or insulting to be disabled that we deny it and try to hide it?

My first thought was they are fools to deny being disabled as they will have missed out things that could have made their lives a lot easier.  For one thing my disabled parking badge had been extremely useful during my worst periods of pain in my hip, so that I could still go out and enjoy places without having to walk too much.  I could not have even gotten that badge without my GP signing to say I was disabled.  Then there is the financial benefit of officially admitting to being disabled so you can get disability benefit of some kind, which helped me pay for things like taxis to places most people could have walked.  Plus all those discounts they were missing out on at the theatre, leisure centre, theme parks and so on, when either you get a cut price ticket or your career/ friend or in my case my mum could get in for free.

For me I could hardly remember a time when I was not disabled having been diagnosed aged seven with my hip problem.  I soon got used to the idea and it became normal for me to consider myself as disabled.  However if you become disabled later in life due to an accident or illness and did not grow up as disabled I think it must be a lot harder to accept.  It can mean having to adjust your sense of identity  and can bring on a lot of strong, mixed emotions.  Before being disabled you may have had an idea of what you think it is to be disabled, ‘Whatever image you had of disability will be the image you first apply to yourself” (Life on Wheels: For the Active Wheelchair User, by Gary Karp).  You may have seen disabled people as unable to be independent, unable to have families or careers, which may make you feel like you have now lost all that in your life.  This is of course untrue of being disabled, but it can take a while to find that out and in the meantime you may try to deny the disability to yourself and others so you can carry on without the fear of change.

Trying to act normal as if your disability does not exist is often known as passing or passing for normal.  There is nothing wrong with wanting to be as independent as possible and being a part of everyday society, however passing is not about that, but more about the problems denying being disabled can cause.   This person with Fibromyalgia writes a good example of passing,

‘I had cut off anything that required long walking, like trips to the zoo, or going window shopping for the day, etc. etc. Slowly but surely, they had just dropped out of my life. As I could no longer do them “normally” meaning on my own two feet, without paying a price of extreme pain. Not to mention, being miserable the entire time.

I would do things like take a long ride or plane trip and would fall on my face when I tried to walk, after being in a forced legs down position for hours. I did this to myself, repeatedly, rather than let the flight personnel bring a chair up to the plane for me. I avoided travelling on account of it.

I finally said to heck with normal ! Got myself a wheelchair, or had them bring me one and went back out and did things again. I finally had to make a choice of, use the chair, or just let such activities slide out of my life … forever. I chose not to permit that to happen,’ (“Passing for normal” cultural pressure and disability).

I can understand why people try to pass themselves off as not disabled.  Quite often society can make you feel like a victim or as a problem.  It can be hard to convince some people who having a disability does not mean you can’t be independent and that you are not going to be a burden.  As Gary Karp writes ‘the boundary between making the most of your abilities and trying to pass as not disabled is a fine line’. However there often comes a point where either you give up on life and ever doing very much or you give up caring what other people say and think about it and just get on with living your life the best way you can for you.

My favourite response to the discussion on Facebook was ‘If you can hardly walk I think that makes you disabled.  All this brave stuff is great, but sometimes you need help.’

I am not sure of the actual answer to the initial question posted on Facebook.  I feel like I am temporarily not disabled any more as my new hip lets me walk and stand longer and I am not in very bad pain frequently.  However I know false hips tend to last about fifteen to twenty years, then they wear out and start to cause pain again.  Then I may well feel disabled again.

I have more than come to terms with calling myself disabled, in fact I kind of like it now as it means I have something interesting to talk about when I meet new people.  Being disabled has led me to meet some of my closest friends who are also disabled and found we had something that bonded us.  Being disabled is just part of being me and I am not going to deny a part of myself.