>Opening Gambit

>I had the most bizarre experience earlier today.  I was walking up to the bureau about lunchtime and there with this guy on a push bike who was riding along but slowed down to talk to me.  Not someone I know.

The very first thing he said was “people laugh at you all the time because you’re disabled.”  Weird.

Then he started talking about how my chair means I can go down the town and run people over.  The main gist of what he was saying was things about how “isn’t it good what disabled people can do these days?” I responded to him a bit then said I needed to get on and couldn’t chat.  I sped up a bit in my chair but he kept pace on his bike and kept talking, asking me questions.  So I just stopped responding.  Eventually he said he had to go and cycled off.

I was telling some of the others about it in the bureau.  One of them said they thought he was lonely and said that people do that sometimes, pick up on differences when they need to talk.  Said they’ve had their own differences to the cookie cutter Brit stereotype picked up on at times too by strangers looking to chat.  Which is interesting because my differences and his couldn’t be more different.

Someone else said that there’s been something on TV lately (which I don’t know about) which had stuff about people laughing at disabled people.  She thought he could have said the thing about laughing to mean that I shouldn’t worry because he wasn’t doing it.

I don’t know and I probably never will but it certainly struck me as a bit of a bizarre opening gambit.

The things people say to me about being in a wheelchair and because of being in a chair is actually something I’ve been thinking about blogging about for a while, particularly about how I react to those things.  Because recent events make me think maybe I need to change it a bit.  So it’s apt that this happened today.  But for now, I think I will leave that here.

>Wheelchair Comments

>My brother saw my new manual chair for the first time at the weekend. His comment? “It’s very wide.”

Yes it is. Thankfully that was a comment I overheard him say to my mum as she got it out the car because I’m not sure what I would have said to that.
On Tuesday my cleaner moved my powerchair forward so she could get at the clean bedding on the shelves behind it.
“I want one of these” she says.
“What would you do with it?” I asked, slightly boggled by the idea.
“Go shopping.”
Oh, of course. I had to laugh at that.
Yesterday my powerchair decided that it didn’t want to charge. So I ended up going to Birmingham for the day in my manual. I managed pretty well but my parents had to get me to and from the station and my friend had to push me a fair bit. I was pleased by how well I managed but I was a bit disappointed by how much I needed to be pushed. Thankfully my friend is more than used to pushing me and has actually only ever seen me in my powerchair once which she found strange.
Lesson learned there being that I will always check the charger myself before big days out rather than getting someone else to hook it up. Although I’m pretty sure the person who put it on wasn’t to blame as when I went through and check all the connections it seemed the one to blame was not one that I ever mess with or get people to mess with but someone clearly had.
Anyway my being in my manual chair was confusing all my journeycare guys who know me well which was amusing.
Particularly when one of them went “where’s your automatic chair?!”
How great would that be? A wheelchair where you just told it I want to go to the station and it took you, no effort involved. My friend suggested an automatic chair could also be one you sent to the shop for milk without you.
I now have a mad idea for a short story involving this sort of thing.

>Dealing

>Earlier in the week my landline phone went and it was a wrong number of a sort. I was sure it was actually a guy I know (he asked for “Stan” but then gave my exact phone number as the one he was after) and so I said “is that so and so, it’s Emma.” and it was and we chatted a little.

I asked how he was and he said “oh struggling, but not as much as you do.”
Hmm.
I didn’t say anything to him about it for various reasons but dude, I think I’m insulted!
My sister and I did have a bit of a giggle about that conversation when I told her though.
Then last night as K and I were walking back from creative writing I told her. She comment that she’s never seen me struggle but she has seen me deal. We’ve been friends about a year now so it’s a fair comment.
I had to ask her to explain what she meant. She used getting stuck in the pub car park as her example because I just dealt with the situation and got on with things rather than finding it difficult.
It was a short but interesting conversation (we reached the point where we part company both about thirty seconds from our houses and were chatting on the street corner, not the best idea!). And she’s definitely right when she says I just deal with things. Because I do.
The hardest thing however (and I think she recognises this) is that sometimes, dealing and even the very fact of having to deal is really hard. Because it’s something I’ve always had to do and always will have to. And it just gets tiring.
A lot of the time I think now I don’t actually realise that I’m dealing as such I’m just doing what I do and getting on with it. As I said to K last night someone has to deal with all the issues and stresses disability brings to me life and it has to be me because there is no one else.
Compared to a lot of the PWD (people with disabilities) I knew growing up (and some of the ones I’m friends with now) I’m very lucky. Because my parents love me and support me but they also believed in tough love as I was growing up. I didn’t get treated particularly differently from my younger brother and sister and I was taught to do things for myself, get on with it, deal with it and most of all live the life I want. Having had that experience all my life has led to me still having a learning curve as an adult and self advocate but I wasn’t starting from scratch like so many PWD I know had to do when they entered the “big bad world” of adulthood.
So… contrary to what the first person thinks I don’t (usually) struggle… I just deal… and hope the day comes when I don’t have to do it quite so much.

>That shut him up

>This afternoon I actually turned round to someone who was helping me as a part of their job and telling me about job moans and replied to their comments with “do I look like I care?”

It felt very good – and shut their moans up quickly. But I think I might have lost my “she’s a nice girl, that Emma” reputation as a result.
Can’t say I’m particularly sorry about that.

>*shakes head*

>This is one of those things that I want to share but borderline crosses my “don’t blog about people you know in a way they could be identified and upset” rule for myself. But here goes.

I saw someone in town earlier today. They were catching me up on various people we both know. And they told me that a guy we both vaguely knew (only really to say hi too) but hadn’t seen for a long time had died a while back. Very sad but I think from what she said it was expected. I believe it was months ago.
He had downs syndrome and belonged to a group of people I know (some better than others as some I knew from before and I’ve not had much chance to get to know the new to me people well) from a local supportive living community.
My acquaintance commented that “they had a funeral” about his death. And the way it was phrased seemed like they thought there might not have been one – or that his friends from the centre might not have gone.
I could write a huge rant about how much else he was other than a man with downs syndrome and how annoyed I was she seemed surprised.
I’ll just shake my head instead.
He had a girlfriend who lives in the same community. They had been together longer than most couples I know. Their love was obvious. In fact it was being told that she had a new boyfriend that led to my hearing of his death.
My acquaintance tells me the new boyfriend is “more able-bodied.” I originally missed the more part and was like “he’s able-bodied ok.” but no I’m told personally she’s not met him but he’s “disabled just more able-bodied than the last one.”
GRRRRR.
I cannot even begin to think of how to describe just how frustrated that made me.

>The Things People Say

>People sometimes ask if I’m “getting better” or if I will get better or what happened to me. At CAB I’ve had several clients ask if I have MS and more than one client has wondered “did you have polio?” One time a client asked “what happened to you?” and I seriously was all confused by what he meant. I’d just been drinking water before I went to see him and I was looking down and checking my top and thinking I’d spilt it all over myself. He then gestured at my walker and I knew what he meant. I don’t think he got why I didn’t realise what I meant.

A lot of the time I get frustrated by comments that people make about my being disabled etc. Because it isn’t their business, it’s nothing to do with them and it’s fine. Until they make it not fine by their pity and their questions and generally making a big deal of it. Yesterday wheeling myself through town someone on a scooter commented that it was hard work for me. I just said it wasn’t, it was good for me. And in many ways that was an innoculous comment and it didn’t bother me. One a lot of people say when they see me wheeling is “you should get a powerchair” or similar. When I was in Glasgow in 2007 a woman stopped me to tell me that a relative of hers ran a pub and they’d fundraised for someone to get a powerchair and could do the same for me. She really didn’t understand why my response was “I’ve already got one, I’m just not using it today.”
Something I don’t think many of those well meaning people who are only trying to be helpful is the fact that a lot of their comments take away from what I’m trying to do (and in some cases achieving) and making it more about the disability and how “terrible” it supposedly is than. Not about me doing my voluntary job, normal everyday things for me or wheeling myself more than I have in months or up a terrible hills I thought I wouldn’t manage or simply living my life and being me. It becomes less about “Emma” who is doing whatever, being whatever, is whatever and all about “the disabled girl” being and doing those things instead.
It’s frustrating. And at times, upsetting.

On my way into town earlier this evening I bumped into a guy who lives near me and stopped to chat for a few minutes. He on more than one occasion (including tonight) has just gestured at my legs and gone “are they bollocksed?” and basically thats been it for our discussions on my disability.
Today he did that and then asked if my legs were getting better. And I told him that they won’t, CP is a life long thing. His response?
“you poor little cow…”
Well I’ve never had that one before! I did have to giggle about it after I left him.