What Have You Done Today To Make You Feel Proud?

(title is a lyric from the Heather Small song Proud)

A few days ago an acquaintance heard I’d done something and was really impressed. She was trying to encourage me to write about it for Tenants Times because doing so could inspire other people and it was a big deal what I’ve done.

I was frustrated by that conversation because I couldn’t see what the big deal was and I don’t understand why it’s news and people who don’t know me would be interested in it. Plus all I could see was it turning into some form of inspiration porn even if I was the one to write it.

I think she was frustrated by my not viewing it as a big deal and also I don’t think she understood my comments about inspiration porn (I feel I did a poor job of explaining it, in part because of previous conversations).  She commented that I’m worried to feel proud of myself. Which I denied to her and couldn’t be further from the truth.

But here’s the thing: what impressed her (and the two other people in the room) was in part what I did but mostly the fact I did it by myself. And in a wheelchair.

And here’s the other thing (which I didn’t think to share with her). In my circle of friends I can name at least three people who would have decided they wanted to do what I did and gone off and done it by themselves. Plus, it’s something I first did by myself in 2006

A friend has pointed out to me since that society considers this an unusual thing to do alone so maybe that’s part of the reason for her comments. Perhaps it’s something my acquaintance wouldn’t feel able to do.

I don’t view this as a massive inspirational achievement. And she’s right when she says I’m not proud of myself for having done it. But that’s because it’s normal for me. The fact I did it “in a wheelchair” shouldn’t come into it.

As a wheelchair user it’s strange that sometimes I can be doing the simplest thing and I get praise and encouragement when I really don’t need it. And then I get told I need to stop putting barriers on myself when I say access means I can’t do something.  Because the very fact I use a chair makes my existence a big deal.

It’s ableist, in a way.  Because if an able-bodied person had said “hey I did this” it might have turned into a conversation about how she wouldn’t have done it. But it would never have turned into a conversation about writing an article, being inspirational and needing to be proud of myself.

Able bodied people are allowed to be normal and mundane you see. Wheelchair users are either sad people who suffer and need to be pitied or objects of inspiration and awe who are overcoming barriers and our disabilities. We can’t be normal, it’s the law.

It’s pretty fucking othering to be criticised for not being proud of something that isn’t an achievement, I’ve done loads of times and didn’t even have to put a lot of thought into. That reminder that you’re different, you’re not normal and you never can be hits like a ton of bricks. Hearing them talk about how I should write about it to inspire people frustrated me because I’m more than the girl in the chair. Being criticised for not being proud left me feeling pretty shit about myself to be honest.

 

 

 

Miles on my tyres

I’ve officially had the Jive for three months now.  

And I’m pleased ro report that I didn’t come anywhere near falling out of my chair in month three so that’s an improvement on the previous two months.  I did freak people out on two occasions but I think that’s always going to be the case with this chair because of how the spider-trac suspension works – when i go up a steep ramp it shoves me really down onto my back castors and the front castors come slightly off the ground.

I did 93 miles in my chair this month and set a new record for the most miles done in a day/between charges – 9.2 miles.  I was away for a few days and won’t be commenting on the rumour that I deliberately did an extra loop around the shopping centre by where I was staying to get that extra mile.  It did surprise me how much distance I covered just getting ready for the day and going for breakfast in the hotel each morning.

I was sure that if there was going to be a month when I did over 100 miles in the chair it would be this one with the number of times I went to London.  But I’m now beginning to suspect that is a goal I won’t meet.

So Take Me As I Am

(title is a lyric from the Meredith Brooks song Bitch)

A couple of weeks ago I was asked how I’d enjoyed a show I went to by a member of staff there who I know. I had enjoyed it but there had been one thing that had happened – which was tangentally access related – that had really irritated me.  It was totally inconsequential and unlikely to be repeated but it had had an impact on my enjoyment and they asked so… I said “If I could just make one slightly bitchy point….”

More recently than that I discovered that the actions of someone else have left me with a huge mess to sort out. I feel more than a little screwed over and beyond frustrated as I did everything I was supposed to do but the person who was supposed to do the next part didn’t and because they didn’t do it at the correct time they now can’t.  And I’m the one who will lose out if it’s not done so I need to do it.  Their failure makes me look bad.

I was ranting to a good friend about that and I said “I know that this is really bitchy but I hope X happens because of this”

She stopped me and said “that’s not bitchy at all.” and made some other comments about thinking I’m acting like a bitch when I’m not.

I say stuff like that all the time when I complain or raise issues.  Phrases like “I don’t mean to be a bitch but…” cross my lips all too frequently.  And really they shouldn’t.

Complaining or raising issues in a constructive or fair way is nothing to be ashamed of. It’s only right and I’m sure that if able-bodied people had to deal with half the crap I have to they wouldn’t be half as calm and dismissive of it as I can be.  Recently a few things have happened which have made me realise just how abnormal my version or normal really is.

A third issue – one of disabled toilet accessibility – reared it’s ugly head. I really thought all the able-bodied people around me were blowing it out of proportion.  It was just one of those things. It happens and it’s irritating as hell and it really shouldn’t but what can you do?!  There were a couple of ways I could work around it and I’d almost never go there again anyway as I was unlikely to have a reason to.  I knew I should complain about the issue and have something done but it happens a lot of places and I was in the middle of dealing with the second incident I mentioned above and just didn’t have it in me to do anything about it.

When one of the people running the event (not the venue) asked me about it I did tell her about it. I told her it both was and wasn’t an issue and had to stop myself talking it down. I don’t think I did a good job of that. And one of the things I told her about was how I worry that people will think I’m alway moaning or never happy.  That I’ve heard those phrases along with “ungrateful” and “argumentative” many times and “you have to understand we’re doing our best” and “we don’t really get many wheelchair users” are among the stock excuses.  It grinds you down.  I wonder, sometimes, if part of the way I so often almost apologise for my complaints or put myself down by phrase it as “being a bitch but” is because subconsciously I think that’s the only way I’ll be taken seriously.  I think the person I was talking to go it and she reassured me they don’t think that about me.

Only.

Later in the session another member of staff wanted to ask me about it. Fine. They wanted to know – was there actually a problem or was the problem that I have a new wheelchair and I’m not used to it yet?  I took her and showed her how it wasn’t big enough for my chair and she got it. But talk about proving my point!

I wish that was my only example of that sort of thing from recently.

It’s not – last Sunday a well known pizza chain refused to serve me because they had a booking for a short time later that they’d chosen to book all of their (small) downstairs for and they had no lift. They had no desire to come up with a solution (I could see from how they had it laid out that a small rejig could have fitted a table for me and my friend in too) and didn’t even apologise. It was clear that they considered I had the problem not them.  And a request I made early this week to another organisation for an explanation why something had happened resulted in my receiving an email Friday that didn’t explain it and basically suggested I should put up and shut up. Again, I was the one with the problem not them.

My friend above who made the comments about thinking I’m being a bitch when I’m not is right, I should stop doing that.  But it’s a bloody hard habit to break when society is desperate not to take me as I am but to blame me for it instead.

An Unexpected Revelation

At CAB today we did some training on how to support clients who are appealing disability benefit decisions. What to do, what type of information to put in the various letters (for mandatory reconsideration) or forms (for appeal).

And the subject of getting dressed came up.

So we covered  the need to check how long it takes, do they avoid certain items of clothing or look for certain fastenings because that’s the only type they can put on (for example I can dress myself but I mostly wear trousers I can pull on and don’t wear socks as I can’t get them on and my shoes sometimes fall off as I struggle with them).

Then someone raises the point of needing to sit down to get dressed.  Someone else said “yes, because that’s not the normal way to get dressed.”

The conversation moved on pretty quickly but I was sitting there thinking “What? Sitting down to get dressed isn’t normal?”

I did kind of know that – I’ve seen many friends and family members get dressed standing up but at the same time it surprised me to hear something that’s my normal described as not the normal way of doing so.  It probably shouldn’t have done but it felt like a bit of a revelation. I think I’d been kind of assuming that sitting to get dressed like I do was normal and it was the ablebodied people with their insistance on standing to get dressed that were the unusual ones.

I mean, really, why do that when you could just sit down somewhere comfy?! It makes sense to me. But if society wants to see their weird hopping from foot to foot and trying to balance as the correct way to get dressed I’m not going to argue with them.

I would so hate to be normal after all.

Yes I Can

Channel 4 have a released an advert for the upcoming Paralympic Games.  It’s once again based around the “superhumans” concept they used when broadcasting the Paralympics in 2012.

I like this advert. I like the way it shows lots of disabled people doing both sport and everyday things like brushing their teeth.  I like how it makes disability both an in your face thing you can’t avoid and a normal thing.

I also especially like the fact that signed, subtitled and audio described versions are available making this a really inclusive, accessible advert. That’s fantastic.

At the same time I’ve been reading and hearing a lot of things about how this isn’t a good advert and shows disability in a poor light, makes it seem that we’re all amazing and inspiration and we can do anything.

I agree and I don’t.

I agree that it’s not as simple as wanting to do something and declaring that I can do it.

In my life I’ve done a lot of things people said I never would.  I used to joke that if someone told me I couldn’t do something I’d do it just to prove them wrong.  But there are always going to be things that I can’t do. Some of that’s down strictly to having CP and in other cases it’s a little bit more complicated.

In the advert we see a careers adviser tell a boy in a wheelchair “no, you can’t.” Then we see him playing wheelchair rugby and screaming “Yes I can!”

But here’s the thing: he can play wheelchair rugby in the paras (or at least I assume he’s a paralympian) because the opportunities he needed to learn to play and get good at it were there.

I did adaptive sports growing up – I used the gym, I went horse riding, I swam occasionally and I did archery.  I lived near a brilliant Riding for the Disabled centre and there’s an adaptive leisure centre in Oxford that my parents (and occasionally friend’s parents) took me too at least once a week.  But the one sport I always wanted to do as a teenager was wheelchair basketball. And no where near where I live provided it.

I could – and did – do many sports. I couldn’t do the one I dreamed of. Yes I can only gets you so far when there’s no where to learn, train or play.  I sail now because there are people who give up their time to support disabled sailors, set up the boats, fundraise, man a safety boat, teach people and buddy if support is needed.  And because my Dad and a friend share the driving. Yes I can gets me a long way but if no one could take me it wouldn’t work. As it is most of the sites regattas are held (possibly all apart from Oxford) don’t have hoists so I don’t really take part in those.

Disability is a lot more complex than the advert shows and the yes I can attitude is great but it’s not the be all and end all. It’s just the beginning.

I don’t agree with the idea that the advert is a bad thing because I think for some people (I’m particularly thinking of disabled kids) seeing that number of “people like them” being celebrated on TV could be a really empowering thing.

(I also think the “We’re the superhumans” tag line really should be applied to both paralympian and Olymians because that level of sporting prowess is pretty incredible disability or no. But Channel 4 just have the rights to the paras so…)

 

Promises to Keep

When I ordered my new powerchair (8th June) I was told it would take between 4 and 6 weeks to come but the manufacturer (Sunrise Medical) had been told it was urgent.  And if I’m completely honest I didn’t believe that was going to make any difference.  But my previous chair was from the same manufacturer and came really quickly so I was hopeful it would be on the sooner end of that estimate.

5 weeks later I asked my supplier if they had any news of when I’d get the chair and if not could they get me an update.  And it turned out Sunrise had decided that my chair needed to be put through the custom build department which is based in Germany.  That had caused a delay and they hadn’t told us (allegedly forgot).  It was definitely going to ship on 27th July.

So I was expecting to hear from the supplier yesterday or today with a delivery date and when I didn’t I emailed to ask for another update.  They checked with Sunrise then rang me. It didn’t ship as planned.  And once again Sunrise never bothered to tell us. It finally shipped yesterday evening (6 days later than planned).  I’m not sure when I’ll get it as the supplier wouldn’t comment when I asked – but it may well be a few days after they get it as they need to do a full inspection before they can bring it out and once it’s here they need to fit it which can take a couple of hours.

I don’t know why the delay – I was told “that’s Germany for you.” and I don’t know about that but what I do know is that delays and poor communication are beyond common with disability equipment and wheelchairs in particular.  I’d have less of a problem with the delay if as soon as it was ordered they had told me “sorry, it’s got to be manufactured by the custom build team due to the spec you want and that’s going to cause a delay, we’re looking at 7 weeks.”

For the past two months since my Quickie Salsa broke I’ve felt like my life was on hold a bit. Especially for the first two and a half weeks when I was housebound. Less so since I got the loan chair and could get out locally but I’ve not been able to get out and about further afield.  And there were events I’ve had to say no to.  I feel like I’ve not done anything or been anywhere since it broke. I made the mistake of saying that to Mum and she proceeding to list everything I’ve done and you know what I have done loads but I’ve also missed out too and it’s beginning to look like I missed my only opportunity this year to do something I’ve done every year since 2012.

I want the Jive to be the best chair it can be for me.  So I do want them to take their time with it and build it properly and well.  But at the same time I wonder if the people working for Sunrise realise what it means to me. I need that chair – I’ve got a life to live: friends to visit and places I both want and need to go and shopping to do and cocktails to drink.  And most of all I’ve got promises to keep and miles to go before I sleep.

An Evening in the Pub

I wasn’t going to blog about this but one of the others on my journalism course suggested I should.

Earlier this week a bunch of us from CAB went to a pub in a nearby town to eat.  It was our post Christmas, Christmas social (we always have it in January).  It’s not a town or pub I know. But based on what I’d heard of the access I didn’t have alarm bells ringing

Then we got to the pub and as my colleague drove past the main entrance and into the car park I could see it had a step. I didn’t know about that step.

Across the dark car park we go. I’m hoping I’m not about to wheel into a pothole I can’t see and tip myself out – the downside of the manual is it tips so much easier than the powerchair. And we try to go along to the back entrance. But the path in the beergarden is narrower than my chair and so my wheels are sinking in the mud where it’s been so wet. I can’t wheel myself through it and nor can anyone else.

Round to the front to look at that door. It’s not happening. Two inch step and a then a tight right angle turn to go through another, narrower door that no one thinks my chair will fit through even if we could get me up the step.

I’m beginning to think I’ll be ringing my Dad to come get me. I don’t know that I’m going to get into this pub.  But then a staff member appears and she suggests getting me in through the kitchen.  It wasn’t level and I needed help to bump up and over the lip and negotiate the tight turns in this old, listed building.

At last, surprisingly, I am in the pub. I greet my colleagues and get a drink.

Then I go to wash my hands because they’re muddy from the attempts at crossing the garden. I come back out of the disabled toilet with clean hands but the knowledge that I won’t be buying the “next round” I’d said I would. Because for some reason there’s only one grab rail in there. By the sink. So I’m making my drink last and putting up with my thirst and hoping I don’t need a wee.

I did enjoy the food and it was really nice to see everyone and have a proper chance to chat. I saw several people I’d not seen for ages (possibly not since the last social in the summer in one case) and met someone new who volunteers on different days to me. It was good.

Then it came time to leave. As they were getting me out, a different staff member was helping. He made some comments, I forget what, and I said “I was told you were more accessible than this.” And he told me the problem was that I was using the wrong door. Wheelchairs always use the front door. “But that’s got a two inch step.” says I. He didn’t reply to that but as he moved out of my way and I wheeled towards the car I heard him tell one of the others that they might look into getting a ramp.

The person who organised our meal emailed me a couple of days later to say she’d sent the pub a message to thank them for our lovely evening. She copied part of the managers reply (who might have been the person who helped my out, I’m not sure) and he apologised for the difficulty in getting “the wheelchair” in and said they are going to look into what they can do to make the front door better accessible within the limits of how old the building is and it’s listed status.

That’s brilliant. I’m pleased that they saw my difficulties and say they are going to try to resolve them.  I’m even more pleased that it didn’t take me writing a letter or making a complaint afterwards to do that.  I won’t go back but it’s nice to think that maybe, just maybe, another wheelchair user who comes after me won’t have so much faff and struggle.

But I really would love for someone to explain to me just how people forget to mention (or don’t even notice) the bloody great step to go in.  Because sadly places do that all the time. And I just don’t get it.

 

In defense of First World Problems

I’m annoyed.

I’ve seen a few blogs over the last few weeks suggesting that a good new year’s resolution would be to ditch First World Problems.  We should ask ourselves about our worries and decide if they really matter, recognise how lucky we are to not have more serious problem and then move on.

But here’s the thing.

I had what some might consider a first world problem this week. Many people would hear what I was stressing about and wonder what the hell I was worried about. I’d found a solution, it was something I’d been thinking about doing anyway and I could afford it so why was I so annoyed and worried about spending the money?

It’s a first world problem, Emma.  You’re lucky you can afford that money. Get over it and stop moaning.

And that little aspect of it? I could understand why people might think that.

But the problem isn’t really about the money.  And luckily those I reached out to about that understood that (and in one case I’m not sure they know what a first world problem is).

That’s the bit I’m focusing on because it’s the bit I’m comfortable with. There’s a lot behind it and it’s too big and messy and not something I can do anything about. I’m happy with my solution. My solution isn’t the problem. The problem is the cost of my solution.

I have a really fun opportunity coming up. I can get there easily. I’ve been there before and I know it’s accessible.

Because of what time it finishes I can’t get home. So I’ve booked a room at a Premier Inn.  I’d been thinking of going away for a couple of days and batting around ideas so when that came up I didn’t hesitate to RSVP yes.  I’ll do something else there before my event and spend the whole day mooching around doing something the next day.  Then after I sent my RSVP I looked at hotel cost.

Right in the centre of a city on week night that room is hideously expensive. I could have got two nights for not much more on a weekend. I can afford it and I think for how much I should enjoy what I’m going for it’s worth it.

But it’s not comfortable.

Behind all of that problem however are the bits I don’t usually talk about.

The fact that cheaper hotels exist really close by but aren’t accessible.

And that public transport isn’t fantastic which means I can’t get between where I’ll be and where I could get home quickest from (or on the very quickest form of transport home) so as always I’ll travel a different route.

The difference in times between the accessible transport at the station people expect me to travel to/from and the one I do is minimal when the difference in times to get places on arrival is considered but when it’s a case of trying to beat the magic hour of midnight when your local station operates unmanned are a problem. It should just about be doable but the slightest delay and I’d be screwed. So whereas many people who live here could go there and get home easily I’d rather not risk it.

I’m fine about all of that. I’m looking forward to a couple of days away and planning and plotting all the things I might do whilst I’m there to fill the few hours before and the whole day after. I keep changing my mind.

The amount that hotel cost however much I can afford it and however much it’s a one off and a treat and it doesn’t matter still feels like too much.

So people can roll their eyes about first world problems all they want. They can laugh and joke and blog about new years resolutions to get over them.  But I think I’ll keep them.  Because for me they’re often the part of a larger but hidden problem that I am capable of dealing with.

Parody

I love music.  And I love parody songs. Sometimes I hear the parody songs first and then discover the ones they’re based on – because I rarely listen to the radio a lot of new songs seem to pass me by for a while lately.

At the moment I’m particularly enjoying this parody of All About That Bass by Meghan Trainor – All About That Change.  It’s especially cool because it’s a parody that Meghan Trainor sings herself (along with James Corden who I’ve never really seen much of).  Apt for this time of year and it made me laugh.

But if I’m honest the number one parody song is always going to be All About That Chair by Heather Schouten. I love it. And sometimes I struggle not to sing those lyrics when I hear the regular version.

“Special Needs”

Language around disability is a really tricky thing. Some terms are acceptable to some people and completely unacceptable to others. Some are fine for disabled people to use amongst themselves or to refer to themselves but problematic when used by strangers.  And there are times when disabled people argue amongst themselves about the terms.  People first language and identity first language are two of the biggest culprit’s there.

One term that I’ve been saying I don’t like and arguing against for the last few years is “special needs”  I can explain why I don’t like it but it’s something I find others always agree with although some people do come to see my point after I explain even if they don’t agree with me.  Basically as a disability specific term it makes no sense.

For the last few days I’ve been reading The Curious Incident of the Dog in the Nighttime by Mark Haddon.  I finished it this evening and it’s safe to say it’s one I’ll be thinking about for a fair while.  The main character is Christopher, a teenager with Asperger’s Syndrome.  I’m not qualified to comment on his portrayal – I liked him as a character but I’ve heard and read various things from people who are on the autistic spectrum that it’s quite problematic. Which unfortunately isn’t that unusual when a disabled character is in a book.

But that’s not what I wanted to blog about.

There’s a moment in the book when Christopher is talking (as narrator) about the term “special needs” and it basically sums up what I’ve been saying about why I don’t like the term. It was a big “yes!” moment of validation for me. So instead of explaining my dislike I wanted to share the quote. It’s one of those that if I was sharing a link to it on twitter I’d probably just caption it “this.”

“All the other children at my school are stupid. Except I’m not meant to call them stupid, even though this is what they are.  I’m meant to say that they have learning difficulties or that they have special needs. But this is stupid because everyone has learning difficulties because learning to speak French or understanding Relativity is difficult, and also everyone has special needs, like Father who has to carry a little packet of artificial sweetening tablets around with him to put in his coffee to stop him getting fat, or Mrs Peters who wears a beige-coloured hearing aid, or Siobhan who wears glasses so thick they give you a headache if you borrow them, and none of these people are Special Needs, even if they have special needs.”

– From The Curious Incident of the Dog in the Night-Time by Mark Haddon (chapter 71, page 56)