(Cross-posted with permission from Murder of the Goths)
I am writing this to apologise, to apologise sincerely, for all inconvenience/confusion caused by my disability. It is obviously very selfish of me to have not taken other people’s feelings into consideration when deciding to become disabled. I should have chosen a different disability – something more straightforward, something more convenient. I apologise wholeheartedly.
This sounds ludicrous right? Who on earth would think of disability in these terms? You’d be surprised.
I’ve written before about some of the difficulties I face with my disability. This post is about the reactions I get to it, while I covered the disbelief as little in the last post, I wanted to say more on it.
What prompted this is my dealings with the local council, at the moment I’m living in a first floor council flat, there’s no lift, just stairs. Obviously this is difficult for me, and so we got a medical note from my doctor and were awarded points towards moving and it was noted that I needed ground floor access. As it is I can’t get my two children in and out of the flat without assistance, and if I had to get them both into the flat on my own I’d have to take a break after getting one up the stairs before attempting to go back down and get the other. They are both under 3 years old, I really cannot leave one at the entrance alone. I’d then have to rest again before making another trip for any bags. I struggle to bring shopping in, or take rubbish out. I’m lucky that I have a husband to do a lot of those things, but it’s not fair on him, nor is it practical for him to always be there to do these things. On top of that, I would quite like to have someindependence instead of being totally reliant on someone else. Here’s where the problems come in, while I have these issues with the flat, I can use stairs. According to the council it’s not possible to be able to use stairs but still have problems in a first floor flat. And so they’ve decided on my behalf that I cannot move into a house with internal stairs, despite the fact that internal stairs are not as much as a problem as entrance stairs for me. They cannot differentiate.
It seems my disability is far too confusing for them, it doesn’t fit into a nice neat box, I can’t just tick a box saying yes or no when asked about abilities.
Can I walk? Yes, but only for short distances/with painkillers/with assistance/on good days/if I’m not carrying anything.
Can I stand? Yes, but only for a short time/with painkillers/with assistance/on good days/if I’m not carrying anything.
Can I dress myself? Yes, but I need assistance with certain items/on good days/with painkillers.
Can I prepare food? Yes, but only if it doesn’t take long/if I can sit/with assistance/on good days/with painkillers.
Can I …..? Yes, but….. .
And so on.
Unfortunately this ability to sometimes do things causes endless confusion and seems to irritate some people. Whether it’s because they cannot put me into a box, or because it inconveniences them.
I know some people will see me do something one day, then be annoyed when I can’t do it on another day. Rather than accepting that my disability is erratic and unpredictable they choose to see it as me being untrustworthy.
Some people also seem to get upset when faced with me still being able to do positive things, for example, having children. As I am disabled I am expected to forego these wonderful experiences, just because some people will not accept that I can be (at the same time) capable of looking after children but unable to do other things. I seem to be expected to sit around being sad and not do anything at all, anything short of that and I am a fake, a fraud, a cheat. I’ve even been accused of lying about my disability because I can type!
You’d think the worst thing about being disabled would be the actual disability, but it’s not for me, the worst is other people. I am always either so disabled that I mess up their plans, not disabled enough that I defy their image of disability, or too much of a mix of both that I make them doubt me. So I apologise. I’m sorry that my totally uncontrollable disability which causes me pain day in and day out is such a nuisance to your life.
Murder of the Goths: A personal blog covering all sorts of topics that affect my life. Whether it’s parenting, disability, geeky stuff, feminism, paganism or (of course) goth subjects. Twitter: @MurderOfGoths
This is so well written and makes me furious (in the positive, lets-get-angry-and-do-something) way.
Thank you for writing it.
Such a common experience, for those with disabilities. The reality is that most people with disabilities don’t have limbs that are simply non-functional, but have diseases of various sorts that mean we need assistance but are sometimes able to do a little.
Yes! All of this! Optimism and smiling will be held as evidence against you! Well written.