Two stories, one theme: Disability

Two disability stories were prominent on BBC Breafast this morning. One, concerned with the creation of disability; strokes occurring in people under 65, all because BCC’s Andrew Marr has had a stroke; and the other that there has been no noticeable take up by disabled people in Paralympic sport after the games. Neither, perhaps is a surprise. 

Discussing Disability: Strokes

Firstly, strokes in people under 65. A dear friend has recently had a stroke, and her Facebook updates continue to amaze me, make me laugh, or make me write something in empathy or encouragement. What stokes have in common with Cerebral Palsy (CP) which I have, is that both result from damage to the brain, meaning that each person is affected differently depending which part or parts of the brain are damaged. This why discerning if people are ‘disabled enough’ to claim benefits or not. It is also why it is hard to gauge how well people ‘recover’, or regain ‘normal’ functioning from strokes. If you would like to read more on why healthy people have strokes, the Beeb have written a feature about it

Disability Sport and the Paralympics: what legacy?

The second story is concerned with disability sport in this post Paralympics era, and comes as no surprise at all to me. Nine in ten clubs saw no noticeable take up in their sport after the Paralympics.The reasons for this are many  and varied. The first comes from disabled people themselves, as pointed out in the BBC’s coverage; you are half as like to participate in sport at all if you are disabled, and if you can find a club near you which can meet you access needs you still need to be able to afford to get there, and have a way of getting there in the first place. Given the squeeze on people’s finances in general, and for disabled people in particular due to benefit ‘reform’, in my opinion this will become more and more unlikely. Of course, the head honchos disagree in terms of take up of participation as Tim Hollingworth argued on BCC Breakfast this morning that due to the success of Paralympics GB’s ‘Parasport’ and specific programs designed to ‘fast-track people to elite level disability sport. He also says that there have been clubs setting up from scratch in the post popular sports such as wheelchair rugby; However, this seems to be masking the real picture. I have pointed out before how the main men are hiding under the success of the games themselves. If you’d like to hear more on legacy, here’s an audio from Discuss winner, John Harris.

At a personal level, why do I not take part in more sport?

I go horse-riding once a week at best, thanks to the generosity of a local social enterprise, and absolutely love it, even in rain or the freezing. I have blogged about the horses before. However. to go horse-riding more often, I would have to go all the way to Middleton, to specialist Riding for the Disabled provision. They have much better facilities, according to someone I met by chance at the social enterprise’s last open day. However, as I cannot afford the taxi fares to get there, and would not have the care time nor the drivers for a notability vehicle. I have no way of getting there, or support while i am there, if anything was to happen to The Bag. 

The second sport I participate in is more mainstream. I have a gym membership that I rarely use. Some of the time this is simply because there are other things to do with my time. The other reason is that I often do not have the energy and therefore need to decide when I realy am to tired and whether I could manage it if I were pushed. I am not able to manage weights machines and things like that, more along the lines of gentle exercise  sometimes swimming, using three machines in the gym, and the toning chairs. However, I am unable to get there on my own because I cannot manage my manual chair; and there are so many difficulties with transport with my electric wheelchair. I am also unable to transfer safely onto machines in the gym without help, and this is often also true for the toning chairs as well.

New Years Honours List: Unfailingly Controversial

A right, or a privilege?

It’s published twice a year, always with a fanfare. To some it’s an ‘exclusive club’ they have no wish to read about, or care who belongs to it, for others, they think they should be part of it and moan when they’re not granted access, or at least, the ‘honour they believe they’re entitled to. It it, and always has been something that has to be earned. Arguments could rage from now until kingdom come whether so-and-so has done enough to achieve their particular honours, or whether they should have been given more, or less.

Different, or Equal

Paralympians have been complaining they have to do more to be given the same titles as their non-disabled counterparts. or that they haven’t been given the title they deserve. I’m unsure how I feel about this. Perhaps it’s right that they raise the subject, otherwise others are unaware discrimination continues, or perhaps it just sounds like sour grapes. I guess I’m somewhat indifferent to it. For me, it’s just a fact of life that we, as disabled people have to fight harder to achieve the same recognition. However, looking at it slightly differently, the same could be said over and over again. We, as disabled people have to fight harder to survive, as babies. Our parents often had to fight hard to get diagnoses,  treatment, equipment, help, the list goes on. We have to fight harder to learn to walk, or to get around, however that is, we have to fight harder to achieve as school, because we could be behind our peers to begin with, whether that be physically, intellectually  or because we need more time off school for hospital appointments  illness, or treatment such as physiotherapy. I vouch for no two disabled people having the same opinion on whether they felt they had to fight for these things or not, or whether they felt ‘ordinary’; no different from their peers to begin with, and therefore starting from a level playing field to begin with. There’s an argument to be had as to whether we should be taken out of school for things like physiotherapy or whether it should be separate from school altogether. However, I digress. I’m trying to say, that although Pearson and Weir may have a valid argument, it might be the case that we as disabled people always have to fight harder for the same things, and as such is a fact of life.

An honour, or a right?

However, the other argument is that it could seen as bad manners to be complaining thus, seeing as it’s just that, ‘an honour’, something earned, not achieved, a fact which Dame Sarah Storey was quick to recognise. (though I now can’t find a clip of her saying it!). It’s also true that some Olympians have more recognition than others, and the same goes for Paralympians. I had no idea Para-equestrian wonder-woman Sophie Christiansen had been made an OBE, (alongside the better known Ellie Simmonds) until I started searching for news articles before I wrote this post.

Christiansen is a personal heroine of mine, has cerebral palsy and a first in maths, of all things. In para-equestrian terms, she competes in the grade I a classification, the ‘worst’ level of disability. Unable to keep her feet in irons due to constant spasms, it is fascinating to watch the ways she works with her horse. Even more incredible when you realise that every horse she competes with is on loan, but that she has the ability to get the best out of each horse she borrows. All the more remarkable she achieves what she does, and therefore, more deserving of her honours than those who can afford the horses, staff or equipment they need. I hope one day to be able to post that Christiansen has been made a dame, until then, I must be content that Paralympians are at now least achieving recognition for their achievements, even if it’s not quite on the same level as their peers.

‘Dave’s’ speech, (1)

Dave’s speech, and the ‘legacy’ of the Paralympics

David Cameron’s closing speech to the conservative party conference has already been talked of and analysed a great deal. I would like to chip in my pennyworth. I started to write about two of the main subjects of David Cameron’s (‘Dave’ to you and me) closing speech to the Conservative Party Conference: The ‘legacy of Paralympics; and something called ‘Compassionate Conservatism’. However, there was so much to discuss I have split it into two posts.

 

‘see the boy, not the wheelchair’

Regarding what Cameron had to say about disabled people and the much talked of ‘legacy’ of the Paralympics,  he talked of both sporting achievement and the change the games made to how disabled people in this country are viewed. To illustrate the latter, he talked of his late son, Ivan and how [he] “always thought that some people saw the wheelchair not the boy. Today more people would see the boy and not the wheelchair, and that’s because of what happened here this summer”.

Others including those who were responsible for bring the games into being shared Cameron’s view. “Paralympic organisers hailed “the seismic effect in shifting public attitudes” to disability sports claiming the Games had changed public perception of disabled people forever”. (The Independent – 14th September 2012) I agree with Cameron to an extent, but not with the sweeping statement from the organising committee!

The Paralympics did indeed change some people’s attitude to disability, and disabled people, especially the younger generation, which I wrote about a few months ago. It makes for an interesting read, and shows that there is hope you the future, if the legacy is handled correctly, but really, have we seen much evidence of that so far? The general public’s view of disabled people may have changed superficially, but a lot more work needs to be done.

 

‘Hate crime’ and the Paralympics

In an article in the Independent from the 14th September 2012 talking about the link between a dramatic rise in hate crimes against disabled people, Scope, a charity working with and for disabled people said:

“Our polling has shown that attitudes towards disabled people have deteriorated over recent years and that many disabled people experience harassment, hostility and abuse on a regular basis. We know if unchallenged these low-level incidents can often escalate into more serious crimes. “

There is a clear disparity here between perception and reality. Until Cameron can be more realistic about the reality of what disabled people face in their everyday lives, little is likely to change.

In the same speech, Cameron talked about how the Paralympics enabled people to dream of achieving things in sport and to be Paralympians. However, this is not realistic for the majority of disabled people.  As far as I’m concerned,, some of it was rhetoric designed to justify budget cuts. It’s like saying, if the Paralympians are achieve great things, then so can most other disabled people, therefore anyone who doesn’t is not trying hard enough, therefore, if you don’t try harder to achieve, your benefits will be cut. For me, some days just being up, dressed and medicated is an ‘achievement’ in itself, and the effort of which can and does send me back to sleep. This happens despite having carer’s help to do all these things.

Also, when he talking about how their should not be any barriers to achievement, and named a number of groups of marginalised people, and said none of these groups should be stopped from achieving, but he did not include disabled people when claiming the Conservatives were the people’s party!

“My mission since the day I become [Toy] leader was to show the Conservative Party is for everyone: north or south, black or white, straight or gay”

As with the public’s attitude to disabled people, more work is needed before disabled people have the same opportunities as others, and would then be free to ‘aspire; to whatever they wanted to, including Paralympic sport!

BBC News – Paralympics 2012: How do people view the wheelchair?

BBC News – Paralympics 2012: How do people view the wheelchair?.

I have been meaning to comment on this excellent video for some time now. In the audio John Hockenberry asks a couple of pertinent questions which, while he provides sparking answers, also provide room for debate. The first is this:

Those exact same elements that might put you off are transformed in the Paralympics. Why? 

It is question of identity,  centered around how we see the “other”, those who are different from our perceptions of normal. Also, where we see the person may alter the image, so not just the body, but also the environment. As he says, it is a case of allowing one image, that which our subconscious has been trained by the media, our nurture, and stereotypes to be seen as tragic, we allow to become triumph. This also explains our potential reaction to any of the pictures in the photographic article The 33 most inspiring photos of the Paralympics. (I have also offered my own comment on the images in my previous blog post.)

This would be the case not only for the person or people looking on, but also for the disabled person themselves. How does their disability alter their view of themselves. I can only speak for myself in this. For me, this such a huge question.; From tragedy to triumph. I have partly answered the question before, in explaining how difficult it ws to come to terms with the consequences of major surgery, but this question also applies to how I view myself as a person with cerebral palsy and as an electric wheelchair user. As I explained in the same article, being told I use a wheelchair full-time, for me, really was a tragedy and one I am coming to terms with. In terms of how it affect my self-image, I feel it makes me look somehow vulnerable, in some ways more disabled than I am, as I am able to mobilise a bit.  Both how I view myself, and how others view me depends on which aid I am using, amongst other things. If I use my electric wheelchair, and my environment allows me to use that chair unaided, I have a sense of freedom I do not have at any other time, as I can decide where I want to go, when, and for how long. Put me in my self-propelled wheelchair however, and it’s a different story. Then, I do not have the same freedom. Recently, mu manual chair was being fixed, and I’d gone to a local gym in a taxi with my Zimmer frame, and a carer. After the usual pleasantries, somehow I blurted out how I wouldn’t be so fine after my swim, having had the exertion of walking from the house to the taxi, the taxi into the gym etc. Her response was incredibly thought provoking. She exclaimed in surprise, “Of course, where’s your wheelchair? You looked so natural walking out of the lift that I hadn’t given it a second thought!” This is party about one way of mobilising being normal, and the other, abnormal, natural vs unnatural. Also, somehow on my feet with the Zimmer at least, I feel taller, and don’t look “disabled” as such. That is, until I wobble backwards, or tire, which happens after a few steps. This particular incident has really got me thinking though. With the Zimmer, however I may look more ‘normal’ but I do not have any of the same freedom as I do the majority of the time in my electric wheelchair. I have to be having a ‘good’ day, both in terms of pain and energy levels, and be somewhere “barrier-free”. A different environment, and it’s a different story.

The tragedy… gets trumped by the intent. When you see the athletes using their bodies and equipment, not being used by it, it changes everything.

My electric wheelchair is definitely the mobility aid which allows me to use the most ‘intent’; the wheelchair has a purpose. Like I say, I dictate where I go, without depending on another. I might not have as much leg function as I used to, but it hardly matters in my ‘go faster stripes’ wheelchair! (mine is similar to the one below, although the frame is black rather than this fetching lime green model, and I have extra cushions!)

So, what else does John Hockenberry have to say about the ‘wheeliechair’? He goes on to describe is as “an alternative to walking, not some shameful and inadequate substitute”. WOW. i guess I would find that easier to identify with if I saw a Paralympian such as Hannah Cockroft propelling her chair in the street, than I can use this phrase for myself. It’s  different too, having walked  for the majority of the previous 28 years. However, I have to learn to see myself as the “agent, not the victim”. I’m sorry if this sounds like I’m labouring the same point. I find this video, and the words Hockenberry uses so powerful and transformative, we are participating and whatever caused my disability, or that of anyone I see in the street is “way back there, way back at the starting line!” 

This view of the wheelchair, and other ‘aids’ has the power to turn stereotypes upside down. however, some of this depends on the look of a product, and the design of it, as well as it’s function. An organisation called Enabled by Design, for example, feature reviews of products, ‘specialist’, or not. I have read several articles on the importance of the design of aids and adaptations. These of course cost money, which is what Disability Living Allowance helps to compensate for. They should be just that, something which assists us, and more readily available, as opposed to often prohibitive costs, which would enable more people to be agents, and not victims. It is about more than identity, and the way others view us, but also whether aids are ‘sparkly’ enough! I’m all for sparkly chairs!

I’d love to know what you think of the video, how you view disabled people when you see them in the street, or the design of aids in general.

The 33 Most Inspiring Photos Of The Paralympics

The 33 Most Inspiring Photos Of The Paralympics.

Apologies for the lateness of this post! However, I felt it was still worth commenting on these pictures. There’s so many “where were you when…?” moments that there’s something for everyone. It’s also I think, the trumphant smile, or act of celebration you see first, before you see the person’s disability. However, some people find that kind of rhetoric harmful, as it somehow normalises the person…. and who, or what is “normal”. It does however subvert the stereotype of disability as something to be feared, to be ignored, or always seeen negatively.

Also there has been so much focus on the triumph, and not just a lot of focus on the legacy. I have seen various paralympians on variuos TV chat-shows and daytime shows. It has also been interesting watching the althletes watching their momewnts of triumph and seeing how they react!

Here’s hoping that in the next few years, there are more of these photos shown. Not just as one of inspiring moments, but as a regular part of sporting coverage, so that triumphs in disability sport are taken seriously,  seen as paralleled to the achievements of those in the equivalent “able-bodied sport.

BBC News – The media and the Olympic Games

BBC News – The media and the Olympic Games.

 

There are several salient points in Douglas’ blog, which is what this post is linked to, above. The first, of course, is: What is there to fill the gap? This being Wednesday, with not even the victory parade to draw on for headlines or for inspiration for my next blog post! I was struck by the way the media covered the Paralympic Games… struck by it, and also relieved, that ParalympicsGB, Channel 4, and LOCOG (Seb Coe) among others, had a Douglas says, delivered what had been promised. I thought though that newspaper focus on the games would die down, and it didn’t. I don’t read newspapers very widely; I tend to read the ‘i’ paper most days, glance at the BBC’s homepage, or follow up links to newspaper articles which have been tweeted about, most often on The Guardian.  

 

This next one is a biggie for me: the two Games had become inextricably linked, not just by Locog, but in the public mind. This, for me, as a disabled person, is one of the greatest triumphs, that Paralympians became recognised as elite athletes were taken seriously of course, but also that people deemed it worth watching. Everywhere I went, people were full of it. Had I been watching it? What were my favourite sports, favourite athletes, because some people either knew I was interested in the games, or because part of my impairment is obvious. For those that don’t know me face-to-face, I travel in a whacking great big 10 stone+  electric wheelchair that needs a name! Wheelchair Athlete Hannah Cockroft’s chair is called Sally whereas mine is still a nameless wonder! Suggestions, anyone?!

 

My favourite question anyone asked me about the Games was, how does the endlessly complex classification system work? This is where I got to indulge my inner geek! For the most part, I’m interested in things that a lot of others are not, but this time, my extra-special-knowledge had a purpose. I could wax lyrical about the classification system to anyone who’d listen, or extol the virtues of Giles Long’s classification decoder  called LEXI, sometimes by way of explaining it by describing what I reckon would be my own classification in swimming. What on earth am I going to talk to people about now the games are over? This is the case even with my carers. The games gave me something else to talk about that was neutral and also interesting. I had some interesting conversations with a few carers about the games, but mostly with the famous (or infamous?!) Carer B! 

i voiced my cynicism to the common preconception (or mis-conception) that the Games has done anything to change the Great British Public’s attitude to disability and disabled people. However, as usual, Carer B was of a mind to disagree. She explained how fascinated one of her grandsons was by the Paralympic Games in particular, not really by the way the athletes looked, by was enthusiastic about every world record broken, every medal one, and talked about it and watched it all the time. This, Carer B told me, was evidence the Games had taught children of his generation lots about disability.

 

Again I scoffed, but she said, was was okay for me to be so blase, but that was because of my prior knowledge from my own experience, but that because it had to taught ordinary people about disability, this would in time change attitudes. Those of the generation it was most important to reach. The future policy-makes, movers and shakers, whose minds have yet to be tainted by any other common pre-games stereotypes of disabled people.

 

The Games also, she argued, provided hope to mothers who may have just given birth to disabled children, as it was proof that someone with cerebral palsy, Dwarfism (sorry, Anachondraplasia) or missing limbs could achieve, and those achievements were of just as much value as anyone else’s. For once, I had little to counter her argument with. Lets hope, that even in the longterm, especially in the long-term, she is proved right!

 

BBC News – Benefits changes: Universal Credit system warning

via BBC News – Benefits changes: Universal Credit system warning.

The ‘magic’ of Paralympics 2012 has already evaporated

I am sorry to say, but my cynicism proved correct! Not even a day after the Closing Ceremony, and here are major concerns from charities involved with the most vulnerable people (disabled people included) who risk being harmed through further changes to the Benefits System in the UK. So, Sir Philip Craven, what say you to the way disabled people are viewed now?

When major changes to the distribution of the funding we (as I include myself in this) rely on for mere survival is being carried out in such a way to risk further harm, and yes to some of the athletes too. At least to those who are unable to work, as Disability Living Allowance, (soon to be PIP) isn’t included in Universal Credit, and so for the moment those athletes who earn a decent wage wouldn’t be affected by this. Depends whether they earn their full income, or if the state tops it up or not, as I think they’d be affected by the changes.

The idea is all well and good, but any idea of a “Universal Credit” is just what it says on the tin, i.e. a one sit fits all approach, worrying charities that people with specific circumstances will lose out. I would wholeheardely agree with their concerns. It is a nice but will not work in practice, as Gingerbread (who work with single parents, state in the article.

There are so many other issues. Even if the IT system is ready in time, and even if people can access it, can access their payments and that part of system works fluently for those who have the IT skills there are still other issues. For example Citizens Advice Beurea warn

the Universal Credit system “risks causing difficulties to the 8.5 million people who have never used the internet and a further 14.5 million who have virtually no ICT skills”.

Oh. my. Goodness. Given that this alone presents a massive challenge and it is by no means the singular problem with the proposals, Ian Duncan Smith should be called to adress people’s concerns. There so many other flaws in the proposed system. Really too many to state and full discuss here. Please read the article for yourself.

Regarding my cynicism I refer to a discussion I had with two friends last night, which is appropriate to include here. I’m afraid to say we weren’t swayed by the “isn’t everything wonderful” attitude of Messers Coe and Craven. 

One final word about paralympics 2012 The speakers did not half talk a lot of nonsense. Lord Seb Coes gems of wisdom included the lines: ”we will never think of sport the same way, and we will never think of disability the same way..” How is he so convinced that years of discrimination and so on has been turned around in te course of a mere 11 days. He’d have to start by changing goenments attitudes to both disability and to disaled people. Another man with high expectations of disabiled people is Sir Philip Craven who talked about a small boy who had been reading Treasure Island with his mother, who asked him about the main character, expecting her son to sy the man was a “pirate, instead he said “athlete” The implications of this, is to assume that all who are disabled in some way are ‘athletes’, or can become athletes which is far from the case.

He also committed a further gaffe , which to me was worse than the first, as he claimed the magic of the Paralympic  Games would last  for an eternity, what a lot of RUBBISH!! Sorry to sound particularly Bible bashing, but he really has not thought this one through.My thoughts seemed to be echoed by my friends, including Partakers_Dave  and, and Pam who said she was “worried that such amazing feats will be expected of all disabled [people]in a way that will be even more disabling”.

Disabled people are made to feel the truth of this already as we’re expected to be ‘superhuman’ when, what for some of us are  ‘superhuman feats’ like being able to work, find and maintain a job is expected of all of us who are out of a job, whatever the reason may be even if we cannot look for a job due to being sick, disabled, or both, never mind having the energy or resources to be a full-time athlete or attempt similarly great things.