Disability Questions

I found these questions over on No Pity. These questions were compiled and put together for a Disability Panel by some of the women in Pickitt at Cornerstone University. What it is, is basically 10 questions you might have always had but never dared ask/ answer.

I thought that they were very interesting questions and it would be worthwhile to try to answer them as best as I could.

1) If you could re-live your life without having your disability, would you?
No! I like the person I am and that includes having CP and being in a wheelchair. Yes, at times it is really, REALLY tough but then there are the things that make it worth it. The things that would never have happened if I didn't have CP. Like going on my sailing trip in september or when I got an article published a few years ago (the article was about my experiences as a disabled student) and I have many great friends who originally came into my life as some sort of professional (physio, carers etc) and stayed as friends. And really Emma and Emma's CP are the same thing - having CP is so entwined in who I am and my personality that I wouldn't be who I am with out it.

2) Do you want people to show interest by asking personal questions about your disability?
It depends on WHO asks, WHAT they ask, WHY they ask and HOW they ask. I don't mind my friends and family asking as long as they are tactful and aren't rude. To a certain extent I don't mind my work colleagues asking questions. What I don't like and would like to stop is people on the street coming up to me and asking what's wrong with me or even how I manage to go to the toilet (which I have been stopped and asked). Because the questions tend to be rude, extremely personal and sometimes asked in a tactless way. And I don't stop random guys on the street and ask them really personal questions like "what size clothes are you wearing?" or "did you have sex last night?" so why should I be expected to answer questions about why I'm in a chair, how I go to the loo, whether I will ever "get better" or anything like that. But maybe I should start telling people "I'll answer yours if you answer mine" and asking dead personal questions which border on rude.

3) What is the hardest thing in life for you to do?

Actually, this question is a pretty hard one for me to answer. I've been thinking about it for several minutes to come up with an answer. I'm a bit stumped for one so all I can say is that physically the hardest thing for me to do is put socks and shoes on (I can't lift my feet up without using my arms and struggle to reach them whilst in my wheelchair). The hardest non-physical thing for me to do is fight for disability rights - because it is so unending.

4) What is the hardest obstacle that you have to overcome often?

The fact that my disability (and by default, my life) is public property and sometimes I have very little control over it.. Every little thing in my life seems to need to be recorded somewhere be it by my social worker who includes the fact I go to RCV swimming group and volunteer at CAB in her reports. Or it is the carers who turn up an hour early because they expect me to be in and just abandon what I'm doing to work with them on making sure my support needs are met. Even the girl on the check out in sainsburys who tells me "I hope you get well. Really soon" is making my life public property because she forces me to reveal that I have always been in a chair and always will be in a chair and then I have to try to explain that it really is ok. I blame the Medical Model for this, especially for the fact that people are so shocked when I fight to have privacy in my life. And so really the hardest obstacle I have to overcome often (nearly everyday lately, it seems) is the medical model and the fight for inclusion, equality and recognition of the Social Model as the one that should be used. If we really must have a model of disability, that is.

I realise that as a blogger I am making my life public property through the writings and photos and other things that I post to this website. However, that is done on my terms - and I have control over what is included which gives me a privacy lacking in other areas of my life. And, actually, my blog is one of the ways I fight this issue. I hope that by sharing my experiences it will help to show the invalidity of the medical model and the importance of accepting and implementing the social model.

5) Do you resent people that try to help you?

I am often irritated and annoyed by people that try to help me. Resent is a good word but only on very rare occasions such as when I have explained repeatedly that the help is not needed yet it is forced on me. Otherwise, I would say that resent is too strong a word as for the most part people who simply take over and start pushing my chair or help in other ways do so because they don't realise its both unnecessary and rude. Generally I find that once I say, "thank you I am fine" they let me be. Sometimes however they act offended that I won't accept the help or argue the point and that's where the irritation and annoyance come from.

6) Would you rather do things on your own?

I fully accept my limitations and will and frequently do ask for help with the things that I cannot manage or struggle with. Those that I struggle with I am working on improving where possible with help. But other than that I am fiercely independant and if I can do something for myself I will, even if I cannot do all of the task myself. I consider that doing things for me that I can do for myself even if I appear to be struggling or it takes me a long time is just not on. By doing that you take away some of the stuff I can do and thus disable me more. That was the hardest part of my JST trip - working with a buddy who, much as I got on really well with her, found it damn near impossible to not help me. One of the other girls was always going on about how independant she was and all I could think was "so I am - when I am allowed."

7) Do you feel any anger towards God because of your disability?

Short answer - No.

Long Answer - I did go through a period of "Why me?" when I was 13 or so and realised that this was forever. I don't think I ever hated God because of that. My "why me?" period came about once I realised that I would be disabled forever. Prior to that I'd always thought that one day I would get better - mostly because physios etc told me to do my exercises so my legs would get better. What I'd never realised was that the better they were talking about was not the never ever needing a wheelchair again that I'd assumed it was. Personally I believe they should have used to the term "stronger". I actually believe (and have done for quite some years) that I have CP because someone had too and I was given it because my soul is strong enough to cope with it. Also as my CP was caused by being a premature baby, the alternative was CP or death and so I am grateful to have it as the alternative is too hard to even contemplate.

8) What do you dislike the most of other people around you (ex- people staring, pointing, etc)?

People asking me questions about my disability really annoys me but what I dislike most is when someone asks a person I am with questions about me as though I was unable to understand/answer them myself. It's nothing but pain rudeness and demonstrates the prevalence of the medical model. And also if it comes to people asking if I'm cold/thirsty/hungry - chances are I know that I am/not but my friends don't!

An example that if you've read my essays you'll have heard before (because I cut and pasted it from one of them):
When I went home for the Easter holiday in my first year at university I went on a trip to London with my Dad and brother. We were sat on the train home, my brother was sat next to me and my Dad opposite next to an older lady who was travelling alone. She had obviously seen us get on together and after we had been sat there for a while started asking my Dad about me. "Is she your daughter?" "What's wrong with her?" "How old is she?" He answered all those questions with one or two word answers, probably not wanting to tell her but resigned to the fact that people want to know all the gory details. Then she asked another question:

"Can she hear and speak?"

Dad just snapped "She's at university" and turned away. My mobile rang and I answered it laughing inwardly at the woman's expression as I spent the rest of the journey chatting away to a friend.

That's a situation where I would be annoyed regardless but had her questions been directed to me it would have been easier to deal with and I would have been (slightly) happier about answering.

9) What is the best way for us to help you?

Do not treat me like a child; treat me as you would like to be treated. Treat me as you would anyone without a disability and wait until I ask before you help me - even if it seems to you that I am struggling. And should I ask for help - please help me in exactly the way I have specified (if I have specified to that detail). I know the best way I should be helped and sometimes doing other things can make things worse for me. - e.g. when walking, people who hold my arm instead of letting me hold their arm tend to throw me off balance and my balance is poor enough as it is meaning my chance of falling is increased! I am also well aware that some of my "how to help me" requests go against human nature and don't make sense to others but they are there for a reason. The one specific one I am thinking of is the fact that I ask everyone who I walk around on a regular basis that if I should start to fall to please let me fall and don't try to catch me. Generally I am able to fall in a way that means I don't hurt myself badly - cuts, bruises and one chipped bone in 24 years of falls ain't bad (this isn;'t counting my wheelchair diving in May this year) And usually if I'm gonna go, I'm gonna go regardless and I can't think of a time I've been caught and not ended up going anyway - often taking my helper with me!

Basically the best way to help me is to respect me and my wishes and accept that I know my limitations and abilities better than anyone else.

10) Do you feel awkward when you are around people that are different than you?

I don't really understand this question. I also think this question would be rude were it not for the fact that these questions were designed for enlightenment and that as much as I complain about rude questions in this situation my anger would make things worse. The people who wrote these questions are unlikely to ever completely understand my situation and this is why they ask.

So, back to the question. This is a really, really silly question ;o) Everyone is different to everyone else. Men are different from women, gays are different from straight people and I am different from my friend Sarah despite the fact that we grew up together, we both have CP and both use wheelchairs, I don't feel awkward around people who are different to me because there is no one else who is like me - I am an individual and damn proud of that fact!