Emma, Elsewhere

If you were looking for a blog post from me today you’ll have to wander over to Disability In Kidlit where a discussion post I contributed to has just been published.

Say What You Will is a YA book by Cammie McGovern where one of the main characters has CP and the other OCD.  If you’re like me and in the UK you’ll find it in book shops under the title Amy and Matthew.

***This link contains spoilers but this post on my blog hopefully doesn’t***

Emma Crees, Courtney Gilfillian, and s.e. smith review SAY WHAT YOU WILL

I really enjoyed the discussion and getting to chat with Courtney and s.e.  It’s a long time since I’ve got to chat disability with knowledge people with similar views to me.  And to get to do it in the context of a book was even better.

I liked the book more than I think comes across in the review until I started thinking in depth afterwards about how sucky the disability aspects were. I don’t think I’d recommend it though.

It was obvious from the word go that the disability stuff was a bit OTT and bad but then when I started chatting with my fellow contributors and thinking about the whats and whys.  I think it’s easy when you’re reading a book and caught up in the plot to overlook the sucky bits but not when reviewing and discussion.  And I wouldn’t want a teen I cared about with either CP or OCD (or actually any teen) to think the portrayal of the characters and the way they were treated was OK.

Polite Small Talk

I meet usually at least two new people each week through CAB.  If I see them as clients I can often find out a lot about them.  They rarely learn much about me.  I do tell them my  name but often that and the fact I’m sat there in a powerchair is all they learn about me.

I also do resident involvement stuff with the housing association I rent from.  I’ve made one really good friend through that and I’m friendly with several others.  But I’ve met loads of people there.  And also because I’ve done disability awareness talks there for staff and tenants there have been a few occasions where I’ve had to stop people and say “sorry I don’t know your name.” and it’s been a case of “oh I forgot we hadn’t be introduced, I was at the such and such talk you did.”

The thing about both situations is that they lead to a lot of polite small talk.  I’ve never been a massive fan of Polite Small Talk.  And it came to me recently that most of the Polite Small Talk I experience is actually quite ableist.  Well, actually it came to me this evening when I was thinking about writing a ranty blog called “it’s ableism when…”

Today I was chatting with a taxi driver on the way somewhere. Started off he was saying how much easier my chair is to secure into the taxi than a lot he gets and then he was telling me about going somewhere with a disabled friend of his and the venue not knowing how to cope.  What was I planning to do when I got to my destination? That sort of thing.  But then his next gambit in the Polite Small Talk that filled my journey (and which until that point sounded interesting because I’d been hearing about the friend incident and thinking “I must look into this group.”) was “so how long have you been in a wheelchair?”

Ableism disguised as Polite Small Talk has also recently taken the form of “so what do you do?” perfectly reasonable and the follow up “how do you get there?” was also acceptable. But then it was third time’s the charm for the apparently necessary ableism component when they then expressed obvious surprise at the news I go in my powerchair with “oh you can do that by yourself can you?”

In years past there’s also been a rare gathering with my family and another.. Work, and “I hear you’ve a new place” and such like were used for the rest of my family.  I got the all time Polite Small Talk gem of “so have you been affected by any of the disability cuts?”  implied in that was not only “I don’t care enough about you to want to know anything personal about you.” but maybe even “I hope so you lazy scrounger”

And finally, another throwback.  It’s gotta be the always annoying “oh but I was really hoping you could come.” and/or “but it’s only 2/4/15/245 steps we can help you up them, I’ll be really disappointed not to see you.” whenever I decline an invitation because the venue isn’t accessible.  If you really wanted meant that and were really hoping I’d come you’d have found an accessible venue.

(I’m wondering now if I’ve ever blogged the story of how the words “oh don’t let that stop you.” basically changed my life but not in the way the idiot who said that expected)

On knowing other wheelchair users

Recently I was in a coffee shop waiting for a friend.  I’d gone a bit early to do some writing (which didn’t happen in the end) and as I was queuing for a drink a very vague acquaintance was in the queue in front of me.  They turned and said Hi.

I said hello and asked how they were and we chatted a bit.  Briefly but friendly, but not really involved.  I don’t know this person and I don’t think we have much in common so I guess that’s how that’s going to stay.

They then mentioned having seen someone we both know recently who for the purposes of this blog I’ll call Dan.  Dan had recently been in an a bit of an accident from what they were saying.

My acquaintance and I first met at a workshop that was facilitated by a guy called Dan.  So I was sure that was who they were talking about.  I haven’t seen Dan in maybe two months but some of what they were saying about wasn’t adding up.

Until I realised that the Dan they were talking about was obviously a wheelchair user.  And the Dan I thought they were talking about (mutual friend) isn’t a wheelchair user.

I don’t know this Dan who uses a wheelchair.  I know there is a guy called Dan who lives near me who uses a chair.  Because of a very vague connection like his mum lives near a good friend of mine and my friend has done the “nod smile and wave” thing a few times when we’ve been out and he’s wheeled past then turned to me and said “that’s Dan…”

Maybe it’s him and maybe it’s not but if it is I’m not sure I’ve ever spoken to him beyond saying hi if he does when I’m with my friends.  I don’t know anything about him.  He’s not my friend and really I don’t think I could call him an acquaintance either.  I don’t think he’d know me if you said “Emma” to him, or even if you said “Emma in the wheelchair.”

I’m sorry but it really winds me up that just because I’m in a wheelchair people assume I know someone else who is in a wheelchair let alone that I’m friends with them.

I have lots of friends.

Some have disabilities and use wheelchairs

Some have disabilities and don’t use wheelchairs

Some are nondisabled.

In pretty much all the cases of friends who are also disabled I have much more in common with them than the fact we both have a disability even if we originally met through a disability group or sailability or something else disability related.

I don’t automatically have to be best friends forever with someone else who spends their life on wheels.  And don’t fucking other me by assuming that I do.

In fact earlier this week I had a dealing with another wheelie and I thought “sooner I don’t have to deal with you any more the better” because they were horrible to someone I really care about.

All my acquaintance had to do was start this conversation with “so do you know Dan?” and it would have been completely different.  Because not only would they have known from the word go that I don’t know Dan (something I never mentioned because I didn’t want to prolong the conversation when it got to the nature both got our drinks stopping point) but I wouldn’t have been confused.

And hopefully I wouldn’t have been told the (luckily not very personal) details of the very bizarre sounding accident of this wheelchair user called Dan who I don’t know but may or may not be the one whose mum lives near my friend.  And who might not have wanted a complete stranger told about his wheelchair breaking accident.

I wouldn’t have done.

 

We’re all going on a quote hunt

I’ve been looking at disability statistics lately.  I wanted one particularly statistic and ended up getting sucked in by several different ones.  But that’s a story for a different blog entry.  One that I don’t feel like writing right now.  I was then thinking about one of those statistics and thinking that I’ve read a quote similar to it.  I was pretty sure I’d shared it here so I went hunting through my quote entries.  I don’t think it actually is here but I found several I’d forgotten about and thought I’d reshare.

“If someone asked you ‘can you swim a mile?’ you’d say ‘nah’. But if you found yourself dumped out at sea, you’d swim the mile. You’d make it.”

 

~Gertrude Boyle

“Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live.”

~Neil Marcus

Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, ‘normal,’ and sane….If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.

~Susan Wendell,
The Rejected Body: Feminist Philosophical Reflections on Disability
“People take different roads seeking fulfillment and happiness. Just because they’re not on your road doesn’t mean they’ve gotten lost.”
~H Jackson Brown, Jr
“It is only possible to live happily-ever-after on a day-to-day basis.”
~Margaret Bonnano

You Know You’ve Got CP When…

Went to get my blood pressure checked (normal and I suspect I’ve now had “white coat hypertension” added to my records given how very very high it was when I saw a new to me GP last week) and have some blood taken. The results of the bloods came back a few days later as “normal” which isn’t the most reassuring thing ever as I’d rather be told what they actually are along with the fact they’re normal. But that’s something to take up with the GP at a later date rather than the receptionist giving me the results.

Anyway I was talking to the healthcare assistant about the fact that years ago I was told by one of the nurses there not to let anyone try and take blood from my arms because my veins were buried and they wouldn’t be able to do it but the last twice they’ve drawn it first time from my arm.  I find it weird that for so long no one could get it out my arms and most wouldn’t even try (and then the nurse told me that and I stopped letting them try unless they’d tried and failed in my hands) but now suddenly they can again.

She wondered if I’ve upped my fluids or lost any weight?  So I was explaining that I have been trying to eat healthier and more sensibly (and to be honest not doing great at that lately but I didn’t tell her that) but that it was proving so hard for me to be weighed and causing so many issues I’ve decided not to focus on that any more.  I used the example of the NHS specialist weightloss service I went to a while ago and how they couldn’t cope with someone of my level of disability and just accused me of letting my disability stop me.

Immediately the healthcare assistant went “no! you don’t let your disability stop you Emma, you’re not sitting on your bum all day…”

And I went “well I am sitting on my bum all day…” and laughed

She went on to say that she meant I don’t just hang around at home doing nothing but I’m out and about all the time at CAB and other things.

I knew that’s what she meant but the way she phrased it originally just tickled me. One of those accidental things that able bodied people say that I laugh about when I point out to them but point out nonetheless because it’s a bit of a silly thing to say to a wheelchair user.

And then as I made my home I thought about the fact that it’s such a “wheelchair user” thing to say – to most people what she said would have been just one of those things but to me it was worthy of comment and kinda funny.

you know you’ve got CP when…