Speaking Out

A few days ago it came out that the little girl who went missing in Machynlleth in Wales last week, April Jones has cerebral palsy.  It kinda made me stop and pause a moment hearing that she’s got CP just like me more than anything else I’d heard about the case. The news coverage all seemed to use the term suffer “Missing Girl April Suffers from CP” screamed the headlines.

I posted to a facebook group for CPers that I belong too that I wasn’t sure whether to be impressed that she’d gone missing Monday night and it had taken until Wednesday night before mention of her disability was made in the press.  Or annoyed by the use of the term suffer.

Impressed because of the added shock value CP would bring wasn’t used immediately. And annoyed about the term suffer because it’s so negative and not appropriate.

Now the group I belong too is really cool and has some really opinionated kick ass people offering support and friendship. I love it.  I don’t think I’ve felt like I belong in an online disability group like I do here.  I also posted a similar comment about the term suffer on twitter.

And in both places there was a bit of a discussion on it. Some people felt like the term suffer wasn’t what mattered here, finding April is.    The group of CPers seemed to focus much more on the CP side and I felt like the tweeters had much more of an issue with my having an issue with Suffer. And I agree that locating April is the most important thing. Sadly however the search is now a murder enquiry and it looks like she won’t come home.

But I don’t want people to pity me. I want people to know that CP isn’t a disease.  It’s a disability, a life long condition that I live with.  And I don’t suffer from it.  I have it.  It’s a really important distinction. One that takes away from the automatic pity “this is something negative” response and shows that it’s OK to live and accept and simply be disabled and content.

Of course for the majority of the people reading that story about a missing five year old who suffers from cerebral palsy it’s just another fact in an already very tragic news story. And those of us who have CP or other disabilities might see it differently whilst still seeing the tragedy of April’s case.  That doesn’t mean I’m wrong to speak out about something seemingly trivial like language though.

I take my time before I speak out and sometimes I pick my moments, decide that now is not the time or this person will never understand or something similar.  The trouble is there is always a reason not to say “I’d prefer you not to use this term to describe disability because XYZ” and if I always went with that reason people would never know what I think.  I’d never manage to reach out and change anyones opinion.

I’ll always speak out whenever I feel I should and that I can.  That might mean that sometimes I say things that others don’t understand or that makes them uncomfortable. And occasionally I might come to regret it and realise that then wasn’t the time.

But at the same time it might be the thing that helps someone feel better about themselves as a disabled person. That makes me feel less like a worrthless freak hated by society (I’ve had days when that’s how I’ve felt) Or it might change attitudes.

I like my disability, I’m proud of it and I love my life.  I have friends and family who support me and I have brilliant opportunities, pretty much everything I need or want is in my reach if I want to go out and get it and I’m generally in a good place and enjoying life.

I want that for other people with disabilities too. I want disability to be seen as a good thing.  And OK so others think my brief comment is inappropriate.  I can’t do anything to help April. But I can speak out and help make sure that other little girls and boys with CP grow up to be accepted and not face negative stereotypes.

That’s so important I can’t describe it. And if I can do something about it, I always will.

Tools, Tenants and Tang, TPAS 2012

The general opinion yesterday was that I “look really tired”. First I met up with a friend and they said it, then the other person we were with came along and said it a couple of times yesterday. And someone at the event we were at asked me if I’d enjoyed it saying I looked tired. I was chatting to one of the journey care staff at Oxford who knows me and she went “oh Emma you look really tired.” Finally when I spoke to mum when I got home she asked if I was tired.

I’m still pretty tired today but less so. Yesterday everyone got simply told “yeah I am.” Today I am thinking of jokey responses.

I spent the last three days (Monday to Wednesday) in Birmingham for the TPAS Conference 2012. TPAS for those not in the know (which included me until recently) works with social housing providers to involve tenants in the running and decision making of their housing provider.

It’s not something I would have thought to go to but I was asked to go. When I was told all my expenses would be covered, two nights in a hotel, workshops, disco both nights and a swanky awards do one night I was like let me think… Yes!

There were I think between 400 and 500 people there, a mixture of involved tenants and staff. I went with another tenant and a member of staff. I knew them before but enjoyed getting to know them better. We laughed a lot the whole time including about some really silly things. It was good fun and non stop!

The hotel was very nice… Pretty swish with thick carpets and some very blingy lights. If you think Pat Butcher’s earrings you get the idea of the sort of thing I mean. They gave me a 12 page accessibility document when I checked in but I feel relatively sure that no OT was harmed in the making of the accessible room I had. It worked but although everything I needed was there and useable there were errors like if you sat on the shower seat you couldn’t shut the screens and the bathroom flooded. Never mind, I’m sure housekeeping enjoyed cleaning my bathroom for a second time that day after my early evening shower.

I realised how much I don’t know but I also learned a lot including:

* I really hate wheeling on carpet

* The TPAS Angels (help staff) are brilliant at helping me at the breakfast buffet. I would ask for something and they’d stick loads on, usually more than I asked for because “it’s only little…” I missed them this morning!

* More than $1 Million is spent in FarmVille everyday. I went to a writing workshop which showed a video on 24 hours in social media It was really good and I think I can do a lot with what came out of it but that FarmVille stat freaks me out. (the title of this blog comes from this workshop where small groups of us came up with a headline to describe the conference)

* I am very lucky in the help and support I get from my housing provider. I knew that already but hearing storied from tenants from all over the country brought that home. Particularly the stories from other disabled tenants, some of which infuriated me.

* I knew that there are a lot of changes coming in social housing but I hadn’t realised just how big and in some cases scary they are.

* That I would rather do almost anything else than hear a particular speaker again. He was so boring and unable to answer the questions people were actually asking him but instead the one he wanted to answer.

* But that I would really love to hear another of the speakers again because she was brilliant. Plus when she got everyone standing for somethng she had thought about it and was like “if you can’t stand put your hands in the air if you can’t stand.” which is good because so many times can’t stand means not included.

* Just how important resident involvement is. I do it because it gives me opportunities to do things I enjoy or am passionate about but it’s about so much more than that.

* And that I really, really hate wheeling my manual chair on carpet.

>Positive About #Disability #attitudes #language

>I think most people know that I generally have a very positive attitude to disability, especially my own disability. Obviously I have my down days and I do have depression. But it’s really rare that it’s related to being a crip. If disability does come into it it’s often due to the attitudes of others or access issues.

Being positive about having CP and needing to use a wheelchair is something I’ve always been. it’s something I’ve grown into an has evolved throughout my life. I’ve noticed that a lot of disabled people can’t always relate to that and people have even accused me of lying or deluding myself when I say I like being disabled and that there are positive things with it.

My first thought was that it’s lifelong disabled people who tend to be the disability pride, positive type people. But then I came to the conclusion that whilst as a group we might be more likely to be positive in my opinion it’s not that clear cut. Not least because three of the most positive about disability crips I know have acquired disabilities.

At the same time as being positive, I also need to be realistic. The two aren’t always easy to reconcile. And sometimes I have to stop and think about appropriateness.

I went to a workshop at the weekend. As a part of that we did some stuff with Facebook. One of the guys there sent me a message after that asking about my disability as he has a child with CP.

I’m always open to chatting to people about these things. So I wrote a message back. You know saying that yes I’ve got CP and similar things. Then I stopped to think and realised I’d written

“that’s cool that your child has CP”

Totally inappropriate. I think CP is cool but you know it’s not the thing to say to someone you barely know. I was really stuck for what to change it too. That’s good is also out. And I refuse to be all I’m sorry to hear that because disability isn’t a negative thing always.

I edited it and just asked how old the child is. But it really made me think about my attitude and how and why it interacts with other people, their attitudes and experiences. I didn’t come to any conclusions but it was an interesting thing to think about.

♥ Emma

>What Access Is – And Isn’t #spartacusreport #disability #access

>A few situation I’ve encountered when it comes to “wheelchair access” and what I’d like to have said in return.

If you’ve got toilets on the ground floor but not a disabled toilet then don’t tell me you’ve got wheelchair access.

If you had wheelchair access you’d have a disabled loo. A toilet which has no grab rails and which you can get a wheelchair in but not if you want to shut the door is not a disabled loo. So kindly take a moment to stop a think and stop claiming you’ve got one.

Don’t tell me you’re really used to dealing with wheelchair users and then tell me you can’t do your usual programme with me because of my inability to stand unsupported. If you dealt with as many wheelies as you said my level of disability wouldn’t be a barrier and I’d be doing what everyone else does.

Your suggestion that I can travel via London Paddington and save time by taking the tube from there is helpful. As is your telling me that there’s partial access in the tube station and my journey is doable. Unfortunately the reason you couldn’t convince me is that there’s no wheelchair accessible way into the tube station there. Listening to me and letting me get a word in would have saved us both the argument.

I asked if you had accommodation that’s adapted. “We have ground floor rooms” isn’t an answer. Because adapted means a shower seat, grab rails and being able to get my chair right in the room.

I’m really grateful you’ve made an arrangement to adapt things for me. But the reason I said I couldn’t do that was because I can’t. So adding on “unless you want to try the unadapted way that is.” is pointless. I’m 30. I’ve lived with my disability my whole life. I know my abilities and limits. I don’t need to be told to try something.

Having one or two steps and a movable ramp makes me think you’ve thought things through. When I arrive and it turns out one or two is actually seven dotted around the place. And that the ramp is moveable but you won’t let my carers move it? I’m going to be pissed off. But not as pissed off as you’ll be when I fall out of my chair on one of the steps and cause a bit of a panic.

>Why I’m Going Off The Term Spoonie

>For the past several weeks, in fact probably the last two months or so, I’ve been really going off the term Spoonie. I mentioned something about that on twitter earlier this week and it didn’t go down well. I sort of had the impression that, perhaps, people were reacting to what I’d said without looking at all of what I’d said.  This is my attempt at explaining myself properly.  Please don’t take offense, these are my views and only that.  I in no way mean to imply that I think the term shouldn’t be used.  It just doesn’t work for me.

The Spoon Theory is a way of describe what it’s like to live with a long term condition and to need to break activities down into chunks and weigh up options to get through them. It’s more about the energy side of things than anything else and is a bit more suited to people with variable conditions. I occasionally find it a useful starting point at times to make people understand but it’s never been a good fit for my own disabilities. People who use The Spoon Theory or who live their lives in a similar way due to a disability or health condition are called Spoonies. There is quite a big group on twitter who use the term to identify themselves.

I have CP, which is a lifelong disability and on the whole is a static condition (basically CP IS static but the affects of aging are felt sooner).  I also have depression.  I think The Spoon Theory (TST) is a great idea, that’s a point I need to get out of the way first.  However the day to day difficulties I face are more to do access, attitudes, equipment and facility availability.  Energy is a concern of mine but secondary.  Partially this is because I haven’t ever known any different so it’s normal to me and I almost do these things without thinking.

Where TST does work well for me is in explaining the concerns I have to take into consideration – is the venue accessible to me, which wheelchair to take, how can I get there, will assisted travel work out or if someone gives me a lift, is there disabled parking nearby?  What distances are involved, do I need to take someone with me, is their a disabled loo, lifts, tables in venues that I can sit at? (a venue with fixed chairs at tables is no good for me).  And the big one, have the people I’ve checked access info with got it correct.  (See Hannah’s latest blog entry for an example)

I try to show a balanced view of disability in my blogging and in my life.  I don’t want to be all Pollyanna and annoying and look how perfect and wonderful my life is but I want to show that being disabled doesn’t have to be a bad thing and that disability does have it’s positives (I wrote more about this is my Disability: It’s Not All Negative post on Scope’s website).  However the term Spoonie seems to me to be used mostly in more negative situations.  Which is fine but goes against what I want to do in my life and how I want to be perceived.

The other side of that same point is that I’ve seen both as a CAB adviser and in other aspects of my life how things can lose their power if they only focus on one aspect all the time.  When I first heard about the term spoonie I thought it had the potential to be a very powerful term in many different ways but sadly now I fear it’s losing it (and possibly even becoming disempowering) which is part of my beginning to feel uncomfortable with the term when applied to me personally.  I’d really love to see a new hashtag started spoonie positives.

Something I can be guilty of doing at times is the “everything is because of my disability” assumption.  I don’t do it as much as I used to but it can be a trap I still fall into at times, particularly when I’m having problems with my depression as I have done recently.  A friend and I were discussing just that lately – she also finds it hard.  But she also said that in her opinion (she’s a tweeter and disabled but as I haven’t asked her permission I won’t share who) she see’s a lot of “this is happening just because I’m a spoonie” going on which in some cases is overuse (she thinks and I can see what she means although it didn’t occur to me).  Obviously it IS hard to know what is and isn’t because of disability and I get really annoyed when people say “would you… if you weren’t disabled” because how should I know?!

I think probably the biggest part of my issues with the term Spoonie as they develop and I come to understand them more is that I’m not the “right” sort of person for it.  I don’t know about living with an acquired disability or health condition.  I don’t know what it’s like to have your life change drastically.  And I don’t know what it’s like to wonder what you’ll be able to do tomorrow – and what you won’t.  It appears to me that most people using the hashtag have conditions like that.  So when I see comments like “all Spoonies dream of a cure” (I would turn a cure down) “we all wish we could go back to how things used to be #spoonie” (I have no before and chose acceptance rather than dreaming of what might have been had I not been deprived of oxygen at birth) “Spoonies are always in pain and tired” (I’m not) etc etc it makes me uncomfortable.  Because those aren’t my experiences.  But, that said,  I’ve always had a problem with labels being applied to me and being shoehorned into groups.

Oh and I haven’t seen this myself but some friends tell me the term spoonie has been mistaken for a sexual thing a few times.  That makes me especially concerned particularly as you have some potentially vulnerable people using it and people can and do share very personal details about themselves with it.  I don’t know what a good alternative would be however.

I wouldn’t be fair in this entry if I didn’t mention the fact that there seems to be a community growing amongst those of use the spoonie hashtag on twitter where people can find friendship and support.  That’s great.  It really is.  I’m glad for all those people and I hope spoonie continues to be used – if only for that reason.  Twitter has also been great for me for the same reasons.

The other positive thing about the term spoonie is that it’s given people who may not be comfortable identifying as disabled or as sick a term they can use collectively for identity purposes as a group.  It’s not one I would use to identify myself – I’m disabled and proud of that fact – but it’s still a valid term and has helped a lot of people.

On the whole as I write this entry I think it’s fair to say I have concerns about the use of the term spoonie and it’s beginning to make me uncomfortable in many ways but that’s just my opinion.  What it basically comes down to is – it’s not for me.

I’m really curious to know what other people think about this please do comment below or send me a tweet I’m @FunkyFairy22


>Why is the R word so offensive?

>A few days ago an anonymous comment was left on one of my entries asking why the R word is more offensive to me than idiot or moron.

For some reason that seemed to be a bit of a difficult question for me to answer; I’m not sure why.  I think for me it’s an obvious thing (not that I mean to suggest the person who asked the question is wrong, I should probably make my points clearer when I write).  I’ve been wanting to respond but not sure how to.

I think that both the I word and the M word aren’t used as deliberate insults designed to target and hurt a specific group of society any more.  I’m not sure of their origins as words.  The R word however, that’s no longer used in it’s correct/original useage – to describe someone with a specific type of disability in a medical way.  It’s used to ridicule and to hurt a specific group of people. Disabled people.  And it’s unacceptable.

If you’re going to take one thing away from this entry, you could take anything I’ve written above, I hope I’ve made it clearer than I did before.  But I’d much rather you went and looked at this post about a much loved daughter and the R word.  It says it much better than I ever could.

Or you could go and read about the battle Nicky Clark had with Ofcom and Channel 4 about the R word being used.  750 Mencap members gave evidence of the hurt and hate they’d encountered from the R word. Yet it still took a protest and multiple appeals before anything was done.  As Nicky wrote in her post, if the terms used had been racist or anti religion the apology would have been immediate.  This isn’t a small problem, it’s a big one.  Unfortunately however it’s a big one not many people take seriously.

And I’m one of a group of people who want to change that.  That’s why the R word bothers me more than the I word (idiot), the M word (moron).

>Been There, Done That

>I’ve been writing a piece about a woman in a wheelchair over the last week or so.  Basically, we’re doing a creative writing anthology in the class I go to. The tutor wrote an opening to a story, the premise of which is that this woman owns a haunted mansion and offers £1 Million to anyone who can last an entire night in there.  We’re all writing our own versions of what happens next.

And as soon as I heard about that idea my first thought was “that sort of place probably wouldn’t have wheelchair access”  I took that idea and ran with it for my part.  Writing it gave me fits but it’s pretty much finished now, just needs a decent edit and I might write a bit more of an ending.  I gave it the title of “Unreasonable Adjustments” which, as I mentioned before,  I absolutely love.  I might stick it online when it’s done or I might not.  Depends what I decide to do with it really.

Anyway at the class on Thursday we each got a couple of people’s opinions on our piece.  Three people read mine and I got some useful feedback.  Although strangely I’ve since reread it and picked up on a major mistake which none of them pointed out.  I did get comments about how it helped them to get into the head of a wheelchair user and see what it was like.  I also got told by one guy that he loved my humour and sarcasm and that it was “very Bridget Jones”

I didn’t write it to help people see what wheelchair users experience or anything like that. And I never set out to be funny, I rarely do deliberate humour in my writing.

I wrote about

Needing to ask pointed questions about whether you can get your wheelchair in the disabled loo and does it have grab rails – because I have found ones before where you can’t.  Or where you can but you can’t shut the door.  Been there, done that.  And later on in the story Claire my main character discovers things aren’t as they were described.  Been there, done that as well. Unfortunately.

About disabled loos being kept locked and staff not knowing where the key is. I haven’t had that one but I carry my radar key on my house keys and I have been asked in places to open it for them because they’ve lost theirs.

Looking for the loo before you’re desperate because it takes time to find it and all the other stress that can go with it.  Been there, done that.

Staff not knowing that they have a disabled loo despite others saying they do have one when you ask in advance.  Been there, done that. In fact at one of my schools a staff member once asked me where the disabled loo was because she had a visitor in a wheelchair and didn’t know.  What gets me about that was it was they knew in advance some of the people coming were in wheelchairs.

Wheelchair access being around the back, by the bins or otherwise out of sight.  Been there, done that.  Too many times to count!!

And about finding people having sex in disabled loos.  I just noticed that one of the people who did a crit for me has written “good humour, one hopes it isn’t based on personal experience” by that bit. And you guessed it, been there, done that.  Once.  And hopefully never, ever again.  Although I didn’t actually see anything thankfully…

Yes, a big plot point does revolve around disabled loos.

I can’t help thinking however that this might show them “what it’s like to be in a wheelchair” from their point of view.  But from mine it really doesn’t.  I don’t know what it would take to show that in a story and I’m not sure I want to try.  This piece might be fiction and it might be a lot of fun.  And I’m really pleased with how it’s come out and especially with the feedback.  It’s a huge part of my life that highlights however.  And a part of me does want to go “this is my life!!” and make them see the bigger picture.

But I don’t think I will.  Because that’s a route which often leads to pity and guess what? I’ve been there, done that.  I don’t want to do it again!!


>my friend Sarah commented in an e-mail today that

Other people really don’t get that ALWAYS having to ask and have help is exhausting and marginalising do they?!

and all I could do was nod as I was reading it and think she’d got it head on again. Plus, marginalising was just the word I’d been trying to think of for it and been stumped by.  The best I could come up with was it made me feel like a second class citizen. Marginalised is a much better word although both basically mean the same thing.
After a trying few weeks where things keep happening that leave me feeling like that.  And especially with people who know damn well I’m a wheelchair user and should know better, it was helpful to read that.
Thanks hon!

>The Resistance Campagn

>If you’re in the UK, please take the time to sign this Not Dead Yet petition.  It’s asking MPs to take the time to sign up and say they support the Resistance Charter.  By signing the charter they will be declaring that they will support palliative care and independent living services and also that they will maintain legal protection for disabled and terminally ill people.

There is also the option on the website to e-mail your MP about the issue – which I’ve done

Basically a lot of people are concerned about what might happen to the rights of disabled and terminally ill people – and the services a lot of people rely on if euthanasia was legalised.  Personally I see it as potentially being a bit of a step backwards in terms of awareness, inclusion and disability rights.

Here is the link The Resistance Campaign

>You’ve come a long way, baby

>Today is Blogging Against Disablism Day.  I’m not really sure what to write about today and I’ve been thinking about it a lot, on and off, all day.

The other night I was at an event and I got talking to an older lady.  It’s to do with a project we’re both working on and we’d said we were both interested in doing a certain part of it.  There were people from all over this area there but it turns out she lives in the same town as me.  In fact I don’t think she’s too far from me although she’s not right on my doorstep and I’m not 100% sure exactly where she is.

So we were chatting a bit and she asked how far I get around in my powerchair.  I said about going all round town and going on the train in it to Reading, Oxford, Birmingham etc.  Her surprise at that was obvious – it seems she thought I’d be stuck pretty close to home (although she didn’t say so in as many words) and she said I’d have to come up to her for a cup of tea.

My first thought about that was that chances are due to access it’s not going to happen (old houses where she is I think).  Then I was I wondered a bit that she had seemed surprised that I get out so much.  I didn’t get a chance to think about it too much because the problems with the taxi then occurred.  (Off topic update on that, I complained and have heard back they are taking it very seriously and will speak with the driver.)

But it’s a long time since anyone’s been surprised by the fact I go places.  In fact, I’m not sure I remember that happening before.  It problem has but not in recent memory.  I get surprise about living alone, about sailing and other things that I get up to.  Sometimes people tell me that the going off on trains thing is big to them.  Not something like going out of the house and getting around in my own town.  It’s a little thing to me, it really is.

I tell everyone that I do these things “with a disability” because I don’t exactly have a choice in the matter.  It comes down to the fact that I want to do these things and to do them I have to do them that way.  The choice is do it or don’t do it.  Nothing more than that.  And it usually ends up being more than worth it.  Not always, but often enough to keep me happy and keep me trying.  I didn’t tell this lady that because it was just an offhand comment she made which showed her surprise and then she was busy inviting me for tea.  It’s such a little thing though that I don’t think my usual spiel would have been used there.  Mostly because I was surprised by her surprise.

I probably would leave this entry here and have it as a bit of a gripe about people’s attitudes to disability.  Then I mentioned her surprise to my mum.

My mum and I get on really well but at times I think that she doesn’t quite get the fight against Disablism and Disphobia.  I get frustrated sometimes if she’s so OK about things that make me mad.  Then sometimes her different perspective makes me think about things differently and that’s ok.

So I told my mum about this lady being surprised that I get out and about in my powerchair (and in my manual too but we didn’t talk about that).  And she pointed out that when this lady was young probably a person like me would have lived in a home (institution).  They wouldn’t have had the opportunities that I’ve got and that will come to me in the future.

This lady’s point of view is shaped (as all of ours are) by what we experience when we are younger and growing up.  I know I can make assumptions based on things I thought I knew because to me they are “normal” and find them to be wrong.  It can be quite a hard thing to realise and sometimes it’s difficult to admit you’re wrong (I’m not trying to say that this lady in anyway needs to apologise to me or admit that).

The other thing that my Mum’s comment made me realise was how far we’ve come.  I can see how far things have come in my lifetime and the changes that have happened.  They’re huge.  But I never thought about looking further back before.  And that really changes things.  As well as making that tiny little bit of surprise make a lot more sense.

The only problem is, however, that I don’t think we’ve come anywhere near far enough.  And that’s why days like today are so important.