“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)

Hate isn’t Funny, part two

To recap: On Wednesday I went to see Omid Djalili do a warm up gig.  I really wish I hadn’t because not only did he used the R word in one of his jokes he also did another which was the most horrendously ableist joke I’ve ever heard.  On Friday I posted a blog about that – Hate Isn’t Funny. This is the last I’m going to say on the matter.

That blog post got a lot of attention on twitter and facebook (and in comments here).  It’s also had the most hits of any of my posts on this blog in a very long time (I’ve not seen the stats but in terms of shares etc I think actually my recent post over on Bea Magazine has had more of an impact but not by much). And I’m glad because it means that people are hearing the point about disability and hate and how it isn’t funny.

It also received one negative tweet but that was just #nosenseofhumour (hashtag no sense of humour) and frankly if people can’t put more substance into their disagreeing with me than a hashtag then they aren’t worth bothering with, I ignored it and made judicious use of the “block” button.

Following a suggestion from a friend of mine and encouragement from my mum I also tweeted Omid Djalili the link to my blog. And to give him his due he did reply and there was some discussion between us.

His response isn’t what I’d like. But that’s mostly because I’d have liked an apology and that was never going to happen.  Frankly some of it was victim blaming. He claims he said, clearly, both nights “I’m not saying all disabled people are….” before making his horrific joke about a disability stereotype. I wasn’t in there both nights but neither my mum or I remember it happening on the night we went. I tweeted back to him that I felt like he was blaming me for being upset by it and he responded “not at all. Entitled to your feelings 100%”

And “obviously” the thing about not choosing venues with wheelchair access was a joke.  That might have been a bit more obvious if there wasn’t precendent of other comedians cancelling gigs at venues that had wheelchair users in obvious places.

On the whole I’d like to think my blog and our conversation on twitter has made several people think about what is and isn’t appropriate when it comes to disability in comedy. And more importantly I’d like to think that it’s made Omid Djalili think and he might reconsider using the jokes.  I really, really doubt I’ve achieved that because I’m too cynical and hardened by too many broken promises about access and equality for my disability. I respect his taking the time to respond but I don’t think he really respects disabled people any more than it seemed he did at his gig on Wednesay night.

Maybe someday someone else will tell me they went to one of his gigs and he didn’t use disability hate speech or ableist jokes.  But it sure as hell won’t be a gig I’m at because I’m not going to waste my money going to see him again.

Disability in the media

I’m paying a second visit over at Bea Magazine this month.  I wrote about the disability issues which were raised by the news that paralympian Oscar Pistorius has been arrested on suspicion of murdering his girlfriend Reeva Steenkamp.

You can read it here:

Disability and the Reeva Steenkamp Murder

The coverage of disability in the media has always been problematic but I’m really hoping this might be the beginning of it changing. I suspect that it’s more likely that it will change the way violence against women is covered by the media than disability.  Still I hope.

Last year I was asked to speak to the local paper about my sailing group having some new equipment after fundraising for over 6 years and raising half a million pounds for it.  It was on the phone and I did tell them I was a wheelchair user because it was relevant (the equipment will mostly help wheelchair users and means I can be more independent).  I didn’t tell them that I had CP.  But in the article it said “Ms Crees who has cerebral palsy and uses a wheelchair said…”  Because that’s what defines me in their eyes.

That and another experience a few years ago where something I said was taken slightly out of context to make it appear like a terrible disability thing in a news clip mean I would be very wary talking to the press again. Basically they obviously really wanted to me to answer yes to a question and wouldn’t stop asking me varients of it.  In the end I said along the lines of  yes it seems like that to you but…”  The final news clip had me just saying “yes it seems like that.”

And I’m just me.  A regular crippled girl who writes and likes to sail.  I’m not high profile at all.  The fact that Oscar Pistorius is high profile is a big part of the reason why there are so many issues relating to disability in the coverage of Reeva Steenkamp’s death but it’s not the only reason. Crimes are committed by disabled people every day.  People are murdered everyday, sometimes by those disabled criminals or by others.  That doesn’t always hit the news. This did and brought with it issues about disability magnified to a whole new level.

I didn’t think of this until after I wrote the piece for Bea but I suspect disability is why it’s getting so much coverage.  If a regular Olympian, say, Greg Rutherford (being only he was the first to come to my mind) was accused of the same crime it would be a big deal.  But I’m not sure it would be quite as big a deal with so many people shocked and talking about it as when it’s the so called “Disabled hero”

I’m not the only blogger who has been tackling these issues.  William Peace has also written about the problem of disability role models (in which he also covers Helen Keller) over on his blog Bad Cripple.

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.

>The Meaning of Wheelchair User #wheelchair #language #disability #disability #CP

>
I’ve been thinking for a while that there needs to be a different term to wheelchair user.

I spend 99% of my waking hours in my wheelchair. I can stand to transfer but I need to get my chair right by the bed or the loo or whatever. The thing I’m transferring to needs to be the right height and also stable. In the bathroom I have to have grab rails and with them I can take a couple of steps. If I stay in a hotel I have to a room with a wheel in / level access shower.

That’s what I mean when I say “I’m a wheelchair user”

Other people who use wheelchairs have a lot more mobility than me. Need to get up a couple of steps? It’s a struggle but it’s doable. Or they can use a normal toilet if they can get their chair outside the door. Perhaps the offer of a ground floor hotel room is all they’re looking for.

And of course there’s a whole spectrum of wheelchair users beyond and in between my own level and that of my hypothetical wheelie.

The thing is though it feels like lately I keep being told “we have wheelchair access” or “we’re used to dealing with wheelchair users”. And then whether I turn up there, or we’re just chatting and it comes up or I ask pointed questions the truth comes out.

They might have wheelchair access but not for a wheelie who can’t manage in the ladies? A wheelie like me. They don’t have the access I need. But it’s ok. Because they have “wheelchair access.”

This NHS support group thing I might be joining, the staff say they have a lot of wheelchair users. They’re used to dealing with them. It felt to me like they were making a big deal of that. Then when I went to meet one of the staff members. And the majority of their wheelchair users? Struggle with distance but can still stand and walk a bit – we’re talking that level of mobility.

The staff are used to that sort of wheelchair user. I’ve already been told that in what I consider a big part of the programme, they can’t accommodate my level of ability. They’ve made a plan to do something else but I can try the regular thing if I want.

Then there’s the accessible hotel room where I get grab rails – and a bath. Despite having told them I had to have a shower. No good wash for me then. Interestingly that hotel had 13 “accessible” rooms – and only 1 had an adapted shower.

I understand that we’re a huge spectrum of ability and need and we’re all different. I value that and I’m not suggesting that any one type of wheelchair user is better than the other.

But I am getting very frustrated and a little bit sick of hearing hype about wheelchair access and then finding that it’s not suitable for someone as disabled as me.

So I’ve been thinking that there needs to be different terms to wheelchair user. One that a wheelie with some out of chair mobility can use to ask for the facilities/access they need. A slightly different one that I can use that people understand means I’m an “all wheelchair, all the time” sort of wheelie and that’s the level of access I need.

After a couple of weeks of thought however I’ve not come up with any new terms.

>Interesting Times

>Lately I feel like I live in Interesting Times as in the Chinese saying.  It’s certainly been an interesting week.

Monday my powerchair broke down with no warning. In the middle of Sainsbury’s car park. In the drizzle. Although luckily it wasn’t raining as such at that point in time. I tried to talk a Sainsbury’s employee through putting my chair into freewheel but he couldn’t do it (whether my instructions weren’t right/clear enough or he didn’t force it hard enough I don’t know) so my plan of getting a taxi back here fell through.

I called my parents house on the off chance someone was there not expecting there to be. But my sister had had an accident and been in minor injuries with my mum for a few hours. They’d just got back. I also managed to get hold of a local wheelchair engineer and he came for my chair and mum came for me.  It did make me smile to see his van turn in one direction towards me and mum’s car turn in the opposite direction towards me at the same time.  Talk about the arrival of the cavalry!

My chair has since been fixed, costing much less than I expected and came home yesterday so that’s good. I don’t think there’s much left that could need replacing that hasn’t already been done at least once.  It reminds me of that episode of Only Fools and Horses where Trigger gets rewarded for having the same broom for some huge number of years but then adds “I’ve had 6 new heads and 7 new handles but still it’s not bad for the same broom” or some such. Only I don’t think my chair is quite that bad…

Thursday I felt lousy on and off all day. To such an extent that the ambulance crew who took me to my appt in spasticity clinic presented me with a just in case sick bowl (I had told them I didn’t feel properly sick but they insisted) and tissues. Late night, early morning and lots of stress me thinks. My alarm didn’t go off. On the plus side having said they were taking another patient to the JR first they then took me to OCE first instead. Win.

I was just about an hour early and wanted to go over to the main building in search of proper food.  The receptionist said “no please stay in the building he’s running to time and you might go in early”. And I then went in just over an hour LATE. (which he didn’t even realise. his nurse apologised to me and he went “oh are we very late?”) I chatted a bit to another lady in the waiting room and her carer (that started because I asked about the over the knee stripy socks she was wearing – v.cool) and did a load of writing on my iPad.

The consultant said that some patients only need one dose of botox and then casting. I’ve had a very good response and my ankles are improved. He went on to say with some patients he thinks definitely repeat the botox and others he thinks definitely not. And me being me I fall slap bang in the middle.  We had some discussion about that.

End result being that he wants me to go back “in a couple of weeks” to see him and my physio in a joint appt as she knows me better. If I feel I’m getting worse in the meantime I can ring his secretary and should be able to go back within a week or so for more jabs. I don’t have a date to go back but when I said “are we talking before or after Christmas?” he said almost definitely before.

Oh and one of his comments was about it being a bit of a schlep from where I live to his clinic every 3 – 4 months if they keep giving me the jabs. This amused me because it really isn’t but going back in two or so weeks really is. Not least because this clinic is meant to be a joint clinic with the physios – alternating between my physio and a specific colleague of hers.  I did see the colleague floating around but not to speak to and she wasn’t in the room during my appt.

I have however been using the term schlep ever since. I find I like it.

Good news to end on:

I have most of the paralympic tickets I applied for but not all. And (this is the best bit!) I have tickets to both the opening and closing ceremonies!!!

One of my besties who just lives about ten mins drive from me also has tickets to the closing ceremonies. Also a wheelchair space. And also in the same category as I have. Hows that for a coincidence?!

>Not Acceptable

>Regular readers of my blog will know that the R word is one that I hate.  I’ve written about it many times before and unfortunately will more than likely have cause to write about it many more times in the future.  An argument I’ve made to many people is “if you wouldn’t use … (insert derogatory term about another minority group) then don’t use the R word”.  It’s hate speech, it’s unacceptable and it hurts.  It actually, physically, hurts.

Unfortunately the R word is alive and well at present as demonstrated by the fact that Caitlin Moran used it in her recently published book which is being pimped left right and centre.  Nicky Clark has written about it here and has had something of a success (Caitlin Moran tweeted something of a pathetic apology and an attempt to justify it and the publishers say any reprints will have the wording removed).

That’s why I was so pleased to see this video (and not just because it includes people from Glee) which will hopefully help towards putting the R word in it’s coffin once and for all.

To help Spread the Word to End the Word, you can visit R-Word.org where you can find information and resources and also take the pledge. Please do so.

>Spoonie comments

>My previous post got what I think is the biggest response I’ve had to my blog ever.  Or at least in a long time.  15 comments here on the blog and at least as many others commenting on twitter.  I knew posting something titled “Why I’m Going Off The Term Spoonie” would stir people up but I didn’t expect that.

I’ve been really loving reading the responses and seeing all the different points of view.  Especially the ones that made me think.  I think I probably need to write something else now I’ve had the chance to talk to so many others and also to discover that my views on the use of the term aren’t as unusual as I thought.  In a bunch of my friends I’m known as the one who says what everyone else was thinking but wouldn’t dare say.  It appears by posting this I may have done something very similar – almost exposed the “dirty little secret” of my little corner of the internet.  All in all I’ve seen one person say the post made them very sad and only one person had a particularly negative reaction to it.  Ironically said person admitted they hadn’t read the post on this blog and were just going by the discussion on twitter.  Unfortunately that got a little heated, but you know what? It’s no big deal, it’s only the internet.
I think the key points that have come up for me in this discussion (or at least until I get the time to write and think more) are:
The Spoon Theory is a useful tool for a lot of people but fewer people in my circle see it as part of thier identity or culture than it would at first appear.  Equally the majority of people do recognise that it doesn’t work for all conditions.
It’s medical model based if you go by such things as models of disability.  When I read the comment in which One Off Dave said that it was a bit of a facepalm moment for me.  If you haven’t read my original entry and don’t want to read any more of this, basically that one thing can be used to sum up everything I said. 
 I personally am much more social model orientated when it comes to my CP (I’ve not considered models of disability and my depression but my initial feeling is that may be more medical model) – the social model states that it’s not our medical conditions which cause our disabilities but the barriers put in place by society.  For example, if an event is upstairs and there’s a lift then there’s no barrier to me getting to it and taking part and my disabilities aren’t a huge consideration.  If there isn’t a lift or it’s broken then it’s a barrier in my way and my disabilities stop me taking part.
I also wonder if the medical model aspects are inherent because it was written by a woman with an acquired illness rather than a disability lifelong or otherwise.  Perhaps the medical model aspects are why it works so well for so many people.  Because they view themselves as ill rather than disabled.  That’s not necessarily a bad thing even if it’s what puts me off.  I am now wondering if a social model based analogy could be written but I really don’t think I could do it and I’m not sure it would be a good idea even if I could!
Going back to the “making me think” category, Incurable Hippie posted a link to Cutefying Disability by S.E. Smith.  Well worth a read and some brilliant points relevant to this debate and covering other terms used to identify us as disabled people which are becoming part of our culture and the culture of society as a whole.

Finally, Kali made the very much needed point that it’s good that we have these debates but it’s even better that we have them and for the most part can do so calmly and agree to disagree where needed.  We are much stronger united than we are apart.

>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

Emma

>Announcing One Month Before Heartbreak

>I can’t believe I’m so behind in my blogging that I officially announced this more than a week ago and I’m only just getting round to posting about it here on my own blog.

A couple of weeks ago I had a bit of a brainwave of something that The Broken of Britain could do.  After having a couple of twitter chats with Kaliya and some thinking this was announced the Friday before last

One Month Before Heartbreak
A Broken of Britain
Blogswarm
14th – 16th January 2011

What is it?

It’s something a bit similar to Blogging Against Disablism Day (BADD). Although I will run this yearly if I need to, I’m really hoping not to need to. Basically it’s people getting together to all blog on a subject or a theme at a specified time. The hope is that by all writing at the same time it raises awareness and makes more of an impact.
Why One Month Before Heartbreak?

The consultation that’s currently ongoing about DLA reform ends on 14th February 2011.Which is Valentine’s Day, traditionally a day for love but which could severely affect disabled people if DLA reforms aren’t handled correctly. We need to ensure that our voices are heard. We’re holding this event a month before the consultation ends in order to raise awareness of the consultation and give people to chance to respond to it if they wish. Bendy Girl came up with the name of this event.
What do I do?

Basically, write about whatever you want. Obviously, it should have something to do with disability and it would be great if you could mention this event and Broken of Britain. You don’t need to write specifically about the DLA consultation and your personal experience.Those are welcome but this isn’t topic specific.
Nor do you need to write. You can do a video, a recording, write a poem, draw a picture, anything you want!
I plan to make space available on my own blog to anyone that doesn’t have somewhere to share and wants it.
Who can take part?

Anyone. You don’t need to be disabled or a carer or know a disabled person to take part.Nor do you need to live in the UK or be British. For our campaign and especially for this event to be successful we need to get this out to the wider community, including the international disabled community and the non disabled community.
What can I do to help?

Post on your blog, twitter, Facebook, any website you go on about this event. We need to people to know it’s happening. And keep doing so until the date comes. Use the #BofB hashtag on twitter.

I have a more concise version of this announcement people can repost if they wish.Comment here if you want it or let me know where you think it should be reposted.
Take part if you feel able. This event runs over three days in the hopes that more people will be able to contribute than if it was tied to a single day. It’s not necessary to participate each day although you can if you wish.
If you spot something to do with One Month Before Heartbreak that you like, tell the person who wrote or otherwise made it. Who doesn’t love feedback?
Equally if you spot something you like share the link so others see it.
More will be posted about this along with some other ideas on how to take part as we get closer to the time. Please let me know of any suggestions or ideas you have.
Language

Language is important. However people have very different ideas about what is and isn’t acceptable. And they have their reasons for it. For example in some areas “disabled people” is acceptable but in others “people with disabilities” is considered more appropriate. Please respect that everyone has a choice. The Goldfish, creator of BADD, has given me permission to link to her Language of Disability Post which explains more about this.
And Finally…

Please don’t feel any pressure to take part or do more than you’re able to. I want people to stay safe and enjoy this!
Don’t forget the date!
One Month Before Heartbreak
A Broken of Britain
Blogswarm
14th – 16th January 2011