Ask a stupid question...

Get a stupid answer!

For various reasons I went out yesterday without the fugly clown shoe like cast shoes on top of my casts




Fugly cast shoes. The ones I have now are too big for my feet (the ones I had that fit went missing when left at the hospital for the few days I was out of plaster earlier this week) hence the clown shoe description.

I went to the supermarket. I was wearing my red skirt which perfectly matches my red casts. Because clearly, matching your clothes and casts is important (unless I want to wear my favourite skirt which clashes but I love, that is...)




And whilst I was in there a woman I didn't know stopped me and asked what I'd done to need the casts.

I said, nothing, there's nothing wrong with them.

And she made it clear that was a totally unacceptable answer.

I just went "it's a fashion statement"

And she gave me a dirty look. But she didn't get a chance to say anything other than to call bye to my back as I moved away.

I am more than happy to talk to people about being disabled and answer questions. I always have been. But only if they are asked for legitimate reasons.

My life is not public property. Being disabled, using a chair and having my legs in casts don't people the right to ask questions simply to satisfy their own nosy tendencies. But when I refuse to answer, people are put out.

It did feel good to put her in her place and especially to be flippant whilst doing so.

Monday Music - Born This Way

I first started thinking about using this song for a Monday Music last week after the comments made by Philip Davies in the House of Commons (he said that disabled people should work for less than minimum wage as they are less productive.)  People were tweeting how they were not worthless and it came to mind.  But in the end I tweeted a link to a video of Bruno Mars, Just The Way You Are.

Then it turned into a bit of a week when people make stupid comments about my disability.

First, earlier in the week someone was saying where the disabled loo was at the event and another person went "where's the normal one?" to be honest I found that kinda funny but she was totally and utterly mortified when she realised what she'd said and apologised repeatedly.  I'm sure she was much more bothered than I was.

Then on Saturday I asked someone "so... how are you?"  The gestured at my wheelchair and then went "well... better than you."  I said "I'm fine." and she said "I know you are"  That did make me want to roll my eyes but it's someone I know well who hasn't been at all well, who didn't look good and said it in such a stiff upper lip "mustn't grumble" type way that I understood and let it go.

A bit later I was out for a bit of a wheel and an acquaintance stopped me to ask if I wanted a push.  I said no and we chatted a bit.  We've known each other a few years but only on and off and really don't know each other that well.  Our conversation went a bit like this:

"How long have you been disabled?"

"From birth.  I've got CP the same as [a CPer we both know]"

"oh how tragic."

"What?!"

"Well you were whole and then there was an accident with your birth and now you're disabled"

"I'm whole now.  And anyway a lack of oxygen at birth was never gonna turn out well.  Better disabled than dead."

She got called away at that point which was probably a good thing.  I was very annoyed by that conversation.  Being disabled doesn't make me less of a person.  But I didn't lose it with her because I didn't feel I could and also I was shocked by the way the conversation had gone.  Now I've had time to think about it? Not happy at all.

I'm a sailor, a writer, a volunteer CAB adviser, a knitter, a friend, a daughter, a sister.  I'm messy, I'm opinionated, disorganised and loud.  I dye my hair crazy colours, spend too much time on twitter, read crappy fanfics and go to bed much too late.  I lose track of time reading too many books, like Doctor Who and want to start watching Grey's Anatomy again.  I eat too much chocolate and drink too much coke.  I'm learning to crochet and have piles of unused scrapbooking materials.  And yes I have both depression and CP.  And I use a wheelchair.  But none of those make me any less of a person who spends all their time on their own two feet.  The most important thing?  I'm me.  I'm Emma.

So for this week's Monday Music I'm sharing Born This Way.  Originally by Lady Gaga, this is the Glee version.  Mostly because the Lady Gaga video is really annoying (the song doesn't start for several minutes into the video) but also because, basically it's Glee.  I love the tops they wear too.

It doesn't matter if you love him, or capital H-I-M 

Just put your paws up 

'Cause you were born this way, baby 

My mama told me when I was young 

We are all born superstars 

She rolled my hair and put my lipstick on 

In the glass of her boudoir 

"There's nothin' wrong with lovin' who you are" 

She said, "'Cause He made you perfect, babe" 

"So hold your head up, girl and you you'll go far, 

Listen to me when I say" 

I'm beautiful in my way, 

'Cause God makes no mistakes 

I'm on the right track, baby 

I was born this way 

Don't hide yourself in regret, 

Just love yourself and you're set 

I'm on the right track, baby 

I was born this way 

(Born this way) 

Ooo, there ain't no other way 

Baby, I was born this way 

Baby, I was born this way 

Ooo, there ain't other way 

Baby, I was born this way 

I'm on the right track, baby 

I was born this way 

Don't be a drag, just be a queen 

Don't be a drag, just be a queen 

Don't be a drag, just be a queen 

Don't be! 

Give yourself prudence and love your friends 

Subway kid, rejoice the truth 

In the religion of the insecure 

I must be myself, respect my youth 

A different lover is not a sin 

Believe capital H-I-M (hey, hey, hey) 

I love my life, I love this record and 

Mi amore vole fe yah 

I'm beautiful in my way, 

'Cause God makes no mistakes 

I'm on the right track, baby 

I was born this way 

Don't hide yourself in regret, 

Just love yourself and you're set 

I'm on the right track, baby 

I was born this way 

Ooo, there ain't no other way 

Baby, I was born this way 

Baby, I was born this way 

Ooo, there ain't other way 

Baby, I was born this way 

I'm on the right track, baby 

I was born this way 

Don't be drag, just be a queen 

Whether you're broke or evergreen 

You're black, white, beige, chola descent 

You're lebanese, you're orient 

Whether life's disabilities 

Left you outcast, bullied or teased 

Rejoice and love yourself today 

'Cause baby, you were born this way 

No matter gay, straight or bi 

lesbian, transgendered life 

I'm on the right track, baby 

I was born to survive 

No matter black, white or beige 

chola or orient made 

I'm on the right track, baby 

I was born to be brave 

I'm beautiful in my way 

'Cause God makes no mistakes 

I'm on the right track, baby 

I was born this way 

Don't hide yourself in regret, 

Just love yourself and you're set 

I'm on the right track, baby 

I was born this way, yeah! 

Ooo, there ain't no other way 

Baby, I was born this way 

Baby, I was born this way 

Ooo, there ain't other way 

Baby, I was born this way 

I'm on the right track, baby 

I was born this way 

I was born this way, hey! 

I was born this wayy, hey! 

I'm on the right track, baby 

I was born this way, hey! 

I was born this way, hey! 

I was born this way, hey! 

I'm on the right track, baby 

I was born this way, hey!

No means No. #disability #awareness

This afternoon Dad and I went racing.  We were looking at the horses who were about to race when the sun went in and it got cold.  So I told Dad that I'd go inside the building next to where we were.

That involved wheeling over to the building and then up a relatively long ramp (luckily it had switchbacks in it so it wasn't too steep).  It wasn't the easiest thing I've wheeled up recently but I'm slowly trying to build up my strength in my chair so I stuck at it.

Partway up the ramp goes past an outside area where people can have drinks.  A man called over to me

"you alright, girl? Do you need some help?"

"No, thanks.  I'm fine, it just doesn't look like it." I replied.

"Sure?" he queried

"yes, sure.  It's good for me."

"It probably is.  I wish my [family member] had your attitude."

"yeah?"

"[they've] just given up."

"Oh, I couldn't do that.  I've always been disabled so I don't know any different."

I forget what he said in response to that but our conversation ended there as I was past the bit where he was sat having a drink.  I was pleased by that conversation.

That ramp should probably be considered two because on one of the switchbacks you go into the building but then have to go straight up another bit to get to the facilities.

At the top of the ramp a steward was standing and saw me on the ramp wheeling up.  He spoke to me too.

"Can I give you a push?"

"No, I'm fine."

"it's no bother."

"really, I'm fine.  But I tell you what would be a help.  Could you open that door for me?" (I couldn't see it clearly but knew it was there)

"it's already open"

He then grabs the back of my chair over my protestations and wheels me approximately the last five metres of the ramp.  Which is basically no help and totally infuriating because he made a snap judgement that just because I'm in a chair I need help.

I'd love to meet more people like the first guy, that was a confidence boost for me.  I hope to meet very few people like the second!

Oxford Regatta 2010

Behind yet again and I have a few other entries which need to stand alone planned.  So just a few thoughts this evening to catch up a bit.

The Oxford regatta was last weekend.  It was my last regatta of the year most likely and I'm not sure how many I will do next year, if at all.  I find them quite hard because although it's a disability sailing event my disability and the set up clash rather a lot.

I made it out once on Saturday and was that cold and sore afterwards that I had a load of clonus and it was hard to get me out of the boat as we weren't using the hoist for various (annoying) reasons.  As a result of that and something that happened with another sailor it was decided on Sunday that there was room for my challenger on the new pontoon with the 2.4 people so I did my patented falling into the boat to get going from the beach and then went from the pontoon for the rest of the day so they could hoist me.

 I did enjoy the sail that morning although I definitely pushed myself beyond my limits which may not have been a great idea.  I'd decided part way through that there was no way I would make it out that afternoon and so I was going to sit it out that morning and keep going until the end regardless of what I probably should have been doing.  Unfortunately it was blowing squalls which made the sailing a bit more challenging. And I'd lent my hat to a friend and borrowed my Dad's to wear myself.  His favourite one.  Which blew away, never to be seen again.  He wasn't very happy about that.

Then someone else snapped at me and I was tired and cold and a bit damp and it all felt like a bit too much.  But my Dad and I made up later and I had some lunch which warmed me up.  Surprisingly I was the only one who sat out the afternoon, although several people did come in early. From what I've heard everyone struggled with the cold and the weather that day.

We came back a bit early and I spent two hours lying under my duvet not really awake but not fully asleep.  Still felt a bit cold after that - so much so I actually took my temperature but it was normal.

Sunday the weather had improved a bit but it still wasn't overly warm.  I managed both sails that day although wasn't out for the entire time in the second one.   I was much happier that day partially because I didn't get wet at all but also because it was a bit warmer.  And hoist transfers make things so much easier!  That turned out to be a Very Good Thing because when they got me out the boat the final time they hoisted me into my chair and I then tried to stand up but I barely got my bum off my seat (but just enough to pull the sling out).  Had an hour to chill or so and then tried to get my towel out from under me and my waterproof trousers off.  Usually I stand up, move the towel and pull my waterproofs down and then someone helps me get them off completely. Not that day. Stood up, my friend grabbed the towel and that was all I could manage.  Stood up again and she ended up helping me pull my trousers down as well as off.  Too sore and stiff for much else!

I must admit there was a very hard moment when someone asked if I'd chickened out by coming in early. I did point out to her that I was in a lot of pain and that was why I came in.  She realises that it was something she shouldn't have said, I'm sure, and probably didn't mean anything by it. But I don't think she realised just how hurtful it was.

That's one of the things I dislike about these regattas is that to a certain extent they focus a lot on coming first etc which is important.  But what about personal achievement and pushing your limits?  That matters too.  I've always thought that the fact you tried is one of the most important things when it comes to disability sports.

But this entry really needs to end on a happy note.  I won one of the races for my class and came second in it for the regatta.  To be completely honest, that was out of two people but I didn't come last overall!!  I was given the medal and cup for second despite that and got to go up and shake hands with the Lord Lieutenant of Oxfordshire.

One of the guys from our sailing club said to me afterwards that the cup for me was more for getting out there and trying and pushing my limits than for coming second of two.  And that's how it should be.

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.