A Trip to Paddington

Last week I wrote about how place are Allegedly Accessible but so often aren’t. About ending up with memories of events that aren’t of the good time I had and the things we laughed about but of things being unexpectedly inaccessible and the pain and struggle that causes.

I went to London on Monday. I’m worried that it’s going to be another thing that in years to come my memories are of someone lying to my face and the fear and panic that caused, rather than the fun that came before. I’m angry about what happened. I’m very sad about how my brilliant day ended and being left with those memories to cloud the fun ones.

I’ve been trying to write about what happened but it turns out I said it all when I ranted on Facebook yesterday. So I will just copy and paste that and add a couple of bits in

My friend Carrie and I went to the V&A on Monday. We got the train to Paddington. I’m really not confident in that area of London (I go into Waterloo usually) and hadn’t felt I could do it by myself. But as we walked back to Paddington I thought I could do this by myself. I even thought I might try going via Oxford to London Marylebone which is an area I don’t know at all.

Then the assisted travel guy wouldn’t listen to me when I said I thought it was better for me to go in the other wheelchair space and he and a colleague we also asked both lied when we tried to insist and said it was the only wheelchair space. Then there was announcement that coaches 9-12 would detatch at Reading. But I was already on the train. In what was announced as the train pulled out as coach 11. Panic.

Twitter to the rescue and a man with a ramp came at Reading, took me off the train walked me past the second wheelchair space in coach 7 to the one in coach 3. Because he was happy to put me at the front like I wanted. Telling me as he did so that Paddington do this all the time. He also said “they don’t care because once you’re on the train you’re someone else’s problem”.

And one of the guys I’ve known for years met me at Didcot, commenting about Paddington and telling me that they’d got a message to Reading as soon as Paddington confirmed where I was.

I always thank the assisted travel team but I made sure to tell the final one how much I appreciate how good they are at Didcot and how I always feel safe when I know it’s him (when the staff put me on the train they often tell me who will be around when I return).

I wish I could say the same about Paddington. I don’t know if I will go there again or not.

[NOTE: I will be complaining and am sending details of my experience on Monday to at least one professional who is collecting assisted travel experiences.]

In which I ramble and am grouchy when it comes to “awareness”

(I was going to title this “why I’m not blogging about CP awareness day” and then I realised that by writing this I pretty much was blogging about CP awareness day just not in the way most people are and that would be a pointless title)

So. Word on the street the internet is that 25th March is CP awareness day. i.e. that tomorrow is CP awareness day.

Except,  to me, it’s not, really.  It’s national CP awareness day in the US.  I’m not in the US and I sometimes feel like the entirety of the fucking internet resolves around people from the US  and that those of us not in it get forgotten about (do you know how many book competitions etc I can’t enter because they’re US only?! Too many).

I just deleted everything I’d written after this point.  I’d somehow managed to hit 443 words without even beginning to cover the point i wanted to make with this entry. Clearly I suck as a concise writer. Particularly when I can actually sum my point up in one TL;DR sentence. Which is:

I don’t really see that there is any need or point in awareness days in general and particularly for CP.

I don’t know what they do.  I find that a lot of people assume I have MS but when I tell them it’s CP pretty much everyone has heard of it. (I did have one rather amusing conversation last year with someone who had CP and CF (cystic fibrosis) confused but…).  I’m not sure why I might need more people to know about CP.

It’s not like there’s some Sheldon style mad scientist in a lab somewhere who has never heard of CP and is sitting there going “hmm I’ve found a cure to some random neurological disorder affecting people from birth and mostly causing mobility difficulties and spasticity but I just don’t know what disorder it is. If only someone could make me aware of it’s existence I could change the world for the 1 in 200 babies born every day with it. What a dilemma.  If only… if only…”

I don’t need a cure.  I’m pretty much perfect just the way I am.  I’m the person I’m meant to be right now.  Plus, given that I’ve spent 31 years using my body in a way it wasn’t designed to be used I’ve got some unusual wear and tear going on (hip issues for one) that curing my CP could halt or possibly improve but wouldn’t get rid of. Also? CP is brain damage. Ain’t no one touching my brain.

And most importantly I can’t help the part of me that reads or hears things about the desperate need for a cure for CP and thinks “there are plenty of other conditions out there that need curing more.  Ones that kill people.” Focus on those.

I class disability awareness and CP awareness as different things.  I believe disability awareness is important.  It’s through the disability rights movement that the community as a whole can improve access and achieve things.  Focusing on little things for one condition or another can’t do as much much as focusing on the majority.  Which is why days like the International Day of Disabled People are much more relevant and important to me (the fact that the entry I wrote for it last year remains one of my most powerful in my opinion is nothing to do with that, honest)

I truly believe that the best way I can help myself and others with disabilities – be it those with CP in specific or disability in general – is just to live my life and get on with things. If people see me doing and being I think I achieve more than if I do some specific stunt to raise awareness of CP.  Because to me CP isn’t just one day – it’s everyday.  And I’m much too busy to do anything more than live my life.

Nothing About Us Without Us

I’m trying to work my way through a series of disability specific terms and especially some disability specific concepts and define them for my blog. A sort of glossary of disability according to Emma if you will.

I’ve also been asked to contribute monthly to Bea Magazine. My first piece went up there today and happily the subject I wanted to write about for them is also something I would have written about in my disability glossary. (Although I hadn’t actually planned for it to me the next entry in my glossary). I’m sure all of my readers are now breathing a sigh of relief that they don’t have to read two lots of my drivel on the subject.

My article is Nothing About Me Without Me.

The article contains a much better explanation with detailed examples etc. And people seem to have liked it. Or at least a couple of people liked the Facebook post of the link, my Dad said it was interested and Mum said it was good (but they are obv biased).

But basically nothing about me without me (or nothing about us without us) is a very commonly used disability rights term to declare the fact that no decision should be made for or about a disabled person without their input. Obviously for different people and for different levels of disability the way decisions are made will vary. And some people will never be able to make a complex decision such as where they live. But they can still have a say. Even if its just whether they want their bedroom painted red or blue. And even if they can’t actually speak.

>This is going to be a super short blog post because when I really had time and wanted to be writing it earlier my internet was coming on and off like a prostitutes knickers.  Or some such metaphor, possibly a more appropriate one I can’t think of right now.  Suggestions anyone?

I’m not that tired but I’m a bit worried that if I wrote a huge entry my Internet might go stupid again and I’d lose it.  Also, I was going to share photos and I don’t want to mess around with them at the moment.  But I’ve been learning (or have learnt, actually I guess) two new crafts in the past few days.  One of the many reasons I’ve not been blogging.

Other reasons include having absolutely no energy and being completely and utterly hooked on listening to an audiobook of The Poisonwood Bible by Barbara Kingsolver.  It’s so good!

I’m working on some disability related posts because I’ve been chatting a lot about different issues and reading a lot of very scary disability related news in the past week or so.  Ashley X has been back in the news, DLA is under threat, the term “special needs” and language as it relates to disability in general are some of those.

Today I heard about a guy writing a book based on his “inspirational” life overcoming CP.  Which he hid for most of his life and his parents asked the drs not to put it in his medical records when they diagnosed him.

And I have a question for some of my American Crip friends. This woman on a message board I post on (not disability related but I used an example of the DDA to clarify/contest a point she made) is telling me that your version of the DDA – the ADA I think? protects you in public buildings and organisations but that private companies can discriminate all they want.

I find that very, very scary.  Is it correct? Seems to me like it couldn’t be law.  But I was wanted to ask someone of my peeps who are in the know about these things.

>The Ashley Treatment is back

>I will write more about this later because this is a story that needs addressing.  I need some time to think on it though.

But I’ve just read that the Ashley Treatment has been decided by an ethics committee to be “Morally Permissible” in certain circumstances.  See: “Stunting disabled children’s growth is ‘morally permssible” group says” (h/t to BendyGirl).

They only looked at growth attenuation and not all the other issues that were involved in the treatment of Ashley X.  The very idea of it makes me feel sick however.

Other entries I’ve written about The Ashley Treatment and about Ashley X

>Dear Prime Minister

>I wrote a relatively long blog post on Tuesday and then my Internet went down and I lost it.  I do have quite a lot to blog about but not today…

The cuts which will be made as a part of the Comprehensive Spending Review were announced on Wednesday.  They will seriously affect disabled people and they haven’t been properly thought through.  The government admits that they haven’t looked fully into how they will affect disabled people.  I wrote a small post about this on Disability Voices.  It includes a link to a Scope campaign about it, asking people to e-mail their MP.

Fellow blogger and Disability Voices team member Bendy Girl, has posted several excellent responses to the cuts.  Dear Prime Minister has been reposted on the Guardian website.  It’s a very moving video response to the Prime Minister about what the proposed removal of Higher Rate Mobility (Part of DLA) from disabled people in care homes.

It’s hard hitting but well worth taking a few minutes to watch.  I’ll post more about my own reaction to the cuts soon but for now I wanted to share that video.

>Deja vu

>I do voluntary work a few times a week. And twice a year we get together socially.

We do this thing when we go out to eat where every seat apart from mine has a number and after each course everyone gets up and moves on so many places. It’s always arranged so I stay put so I joke about how it makes me the Queen of the evening and how everything revolves around ME! So you talk to loads of different people and you talk about loads of different things. It’s really fun. You learn things about people you never knew and you get to talk to people you rarely see – those who volunteer on different days to you for example. It’s a practice I would recommend for any big group meal or some such.

Last year we went to for an Italian and I was sat there eating pizza and talking to one of my colleagues about Ashley X and the issues surrounding her and all the controversy. It was January and it was a hot topic at that time. And she hadn’t heard of her.

Fast forward one year and we went out to eat again last night. We went to a different Italian Restaurant in a different town to the last one (which I think I preferred but which has now shut). I ate a lasagna which could really have done with some more pizazz.

Again in a general current events type conversation I talked with a couple of colleagues about disability rights. Specifically, about Katie Thorpe. And again, just like the majority of people I mentioned her/The article in the Guardian to over the last few days, they’d not heard of her. Talk about deja vu!

Shane Graham

Brent Martin

Ashley X

Charlotte Wyatt

Terri Schiavo

Katie Thorpe

Different from me and yet the same, they are “my people” who have suffered and in some cases continue to do so from a system that doesn’t care or which cares but not enough. Who have their rights abused and their lives considered worthless because they share (or shared) the same tag I do – Disabled.

They matter to me.

I hope that this time next year when our post Christmas “Christmas meal” comes around there won’t be another name on that list and that I won’t spend my time socialising, chatting in general and educating my colleagues about another name on that list.

Enough is Enough.

>Katie, again.

>And me, this time, too ;o)

The Guardian has an article on it’s website about Katie Thorpe – Whose Life is it Anyway? And they included an extract from one of my blog entries about her in it.

How cool is that?!?!

I quite like the article, I think it does a fair job of describing the thoughts and feelings of disability bloggers and of Katie’s mother. And it hasn’t degenerated into disablist language or such stereotypes, which had concerned me.

As I’m writing this there are two comments left on the article online and neither of them particularly fill me with joy. I’m waiting to see if there is any further response on the article before I comment myself (and also until I’m less “argh!” about the comments). They are the sort of comments I would expect to see but to me they are ones that seem to miss the point. Or at least the point I was making in my entry.

The point being that this could have been (and still might) be a very, very slippery slope.

I pray it won’t be.

I’d love to hear your views on the issues involved/ Katie Thorpe’s case specifically/ Ashley X / the article in The Guardian. They can be left in the comments.

However I will be moderating them and if this is your first time posting it won’t show up until it’s been approved. If you have commented before and been approved before, however, it’s business as usual. That is standard procedure on my blog and is not new today.