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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.