Tuesday, 18 September 2012

ESA cancer concession signals popularity contest for disability benefits

The news that the Government is softening its harsh approach to cancer patients claiming sickness benefits is a welcome relief. Yesterday it announced that the one year time limit for recipients of Employment and Support allowance will only start counting down once the patient has finished all their medical treatments. It has also said that cancer patients can avoid the WCA medical test carried out by Atos as a GP's report will be acceptable proof for the benefits office.

Finally, we think, the Government is being reasonable. It is trusting NHS doctors again to verify the health of their patients and at last recognises that forcing cancer patients to attend DWP job interviews will only slow down their recovery.

Yet perversely this common sense approach to benefits locks the Government into ever more irrational behaviour. As these changes will only apply to cancer patients, other people with just as serious illnesses will still be locked into an unfair system in which they will lose benefit payments after one year even if they are not well enough to return to work - remember the Government's own estimates show that 94% of people who received time limited ESA will not be better after 12 months. The work-focused ESA also forces sick people to seek jobs, attended job centre interviews and even do unlimited work experience while they are still too sick to work.

So yes this change is great news for cancer patients but it stinks to me of a Government running scared that the public is waking up to how punitative and harsh its sickness benefits system is, and is desperate to avoid appalling headlines like this one. Cancer receives widespread media coverage as it can happen to anyone at any time, so come the election such Government negligence could have become a real door-step issue. But ultimately if the Government recognises changes are needed for ESA and the WCA it has a duty to ensure that they are rolled out universally not just for a particular group of people for whom there is greater public sympathy or understanding.

Just as worryingly this shift in policy sets a precedent that those illnesses that have popular support from the public will get a fairer hearing in the huge welfare upheaval than those who suffer from rare or unpopular illnesses (think what a rougher ride those with depression receive from the tabloid press).

Earlier this year Ian Duncan Smith announced that under Personal Independence Payments (the controversial benefit replacing Disability Living Allowance) amputees will be unlikely to receive the top level of mobility support that they currently do under DLA, and warned the public that this would also apply to soldiers.Yet Cameron intervened saying that amputee war veterans will be exempt from the harsh restrictions planned for the mobility component of PIP.

How can Cameron argue that a civilian with a below the knee amputation caused by a road traffic accident is any less disabled than a soldier with the same amputation caused by an IED?

I can see the way the wind is blowing on this issue and I for one don't want a society in which people with illnesses are pitted against each other in some bizarre X-Factor-style media popularity contest as the rest of us judge who is and isn't deserving of fair treatment.

Monday, 10 September 2012

The myth of ‘overcoming’ will damage the legacy of the paralympics

Thanks to the Paralympics disability may suddenly have become mainstream, but while wider society may be openly talking about those who are disabled I still fear it is not listening to what we have to say.

The papers have veered from castigating disabled people as state scroungers to elevating them as a source of inspiration of how to live life properly. It is great that we can use this spotlight on disability to highlight the unfair cuts to benefits that disabled people are currently facing but this focus on welfare shows just how far society has to go until disabled people are seen as part of everyday life. Inevitably the discussion around disability remains centres around issues of economic value because society struggles to understand the value that disabled people contribute elsewhere.

Disabled people, whom these days I count myself amongst after my degenerative illness Cystic Fibrosis has scarred my lungs to such an extent that I now find it very difficult to walk, don’t actually want to be venerated or viewed with suspicion - we just want to be seen as the normal people that we are. Yes we have extra needs that we need help with but we want to contribute to and impact on mainstream culture in the same way that other numerical minorities such as gay people and black people do.

At the opening ceremony, David Cameron said the fact that competing Paralympic athletes “overcome disadvantages” would help “change people’s minds” about disability, but the games alone cannot be expected to widen perceptions, given that they focus on only a tiny niche of those with a disability. Instead I fear it will just impose a different set of able-bodied expectations onto the disabled community.

The discourse around the Paralympics from scrounger to hero unfortunately shifts stereotypes from one of being a drain on taxpayers (always forgetting that many disabled people are also taxpayers) to one in which the disabled must “overcome” their disability to earn respect from society. Yet locked into this very logic of ‘overcoming’ is the assumption that to be able-bodied it better than to be disabled. Edwina Currie’s unfortunate tweet during the opening ceremony that the Italian team were “gorgeous even in wheelchairs” epitomises the concept that disability is something to be looked past, not something that in itself could be attractive.

But ask disabled people if they would prefer to be able-bodied and you won’t get the answer that you expect. Cystic Fibrosis is slowly overwhelming me, yet I can’t say I would rather not have it because everything I have achieved, everyone I love, everything I am, is bound up with my identity as someone who has Cystic Fibrosis. I can find creative ways to accept and navigate my limitations, I can find happiness in doing so, but I can’t ‘overcome’ my illness - it is incurable.

If we want perceptions to change, then society needs to learn from our acceptance of our disabilities: it needs to learn to accept them, too and embrace the added diversity we can bring to communities because of our disabilities not in spite of them.

In a society in which our differences were appreciated and valued, we would be more welcomed by employers, find more thought given to accessible transport, and generate more outrage at benefit cuts that threaten the independence of disabled people. The fantastic Channel 4 Paralympic advert features a lyric by Public Enemy which resonates with me: “Thank you for letting us be ourselves”. The Paralympics may have got the debate started but we have a long way to go until society’s perceptions will truly allow this.

Monday, 3 September 2012

In praise of an accessible paralympics (and amazing volunteers!)

I was lucky enough to go to the London paralympics yesterday (and see the wonderful win by David Weir in the 5000m wheelchair race) and had an amazing time, very much in part because of the thoughtful attitude shown towards those not as able to get around as most.

The paralympics has received criticism from some disabled people due to an inability for some wheelchair users to sit with all their family at events and for the need to use a premium rate phone line to book accessible tickets. These problems aren't minor and should have been considered and overcome in the seven years of preparation for the 2012 paralympics, but on this occasion I wanted to take the time to congratulate the organisers for also making available some excellent facilities for disabled people.

I have Cystic Fibrosis (CF) and my lungs are now rubbish enough that I struggle to walk any distance at all. The olympic park is the size of 350 football pitches and I'd been worrying for weeks in advance as to how I was to negotiate such impossible distances without my car. But the facilities available made what would have been a very stressful, exhausting and likely impossible day, AMAZING!!

Amazing accessibility
The moment we walked off the tube at Stratford there was a sign pointing towards a side exit very close by that had minivans available for those with mobility problems to take them into the park itself. Both my husband and Mum were welcomed to accompany me on board even though they don't have any health problems. The vans also accommodated all types of wheelchairs enabling them to be safely secured and for the chair user to also have a seatbelt.

Once we arrived at the park, there were volunteers with wheelchairs to take people the short walk to the Games mobility centre where you could borrow a wheelchair or mobility scooter free of charge (just bring photo ID). With this scooter I experienced the freedom I haven't had for years in that we could go all the way to the end of the park (at least a 30 minute walk one way) without feeling like I was killing myself with the effort - to be honest without it I know we would have just stayed by the stadium as my breathing was pretty bad yesterday.

There was a parking bay for the scooters near our designated entrance to the stadium and a volunteer available to show us to our seats. It was at this point we discovered our seats were very near the top of the arena and that there were no lifts! I really panicked as to make it up all those stairs would have been unbelievably hard for me, if not impossible, but the volunteer showed us to the ticket resolution desk, explained our problem and had our tickets exchanged for seats on the ground floor. To be honest the view was so much better - the first time I've ever experienced a CF upgrade!

Welcoming and wonderful attitudes
Unlike the current trend in the wider society that demands almost complete helplessness before help is given, the facilities offered showed a nuanced understanding of disability. It recognised that some of us have adapted and curtailed our everyday lives to cope with our disability but need extra help outside of our home or when we can't use a car.

But the best bit of the whole day was everyone's attitude to my health. The 'games makers' volunteers were unbelievably helpful and respectful. Without them I wouldn't have had the day out I had. I have CF so its a hidden illness, I look ok on the outside, I'm slim, I don't need oxygen, I have all my limbs and I don't seem too out of breath if I don't move much. But no one questioned whether I was ill, there was not even an eyebrow raised or a look of distrust in anyone's eyes. They accepted I needed help, didn't ask why, and gave it to me openly and with a smile and desire that my family should have as good a day out as everyone else.

I wish, wish, wish I'd ask the name of the young black girl, with the coolest hair cut, who swapped our tickets so I could say a public thank you. But she was a wonder! Then there was a soldier who was manning the body scanners, similar to those at airports, at the park entrance who assured me I'd get the scooter through as "long as you're a good enough driver", and the couple who asked me to beep my horn on my scooter so they could run behind me to get through the crowd. These light-hearted attitudes were so precious to me, as yesterday was the very first time I've had to use a mobility scooter to help with my walking. It could have been a very sad day for me, a marker of how poor my health is at the moment, but it wasn't. No one stared, judged, questioned. I didn't feel left out, in fact I felt more a part of everything as I could go where everyone else could go. I loved my scooter!

This is how society should be - that disabled people can ask for help when needed and that that help is offered by people who want you to be a part of the celebrations.

So there are good lessons to be learnt from the paralympics as well as bad ones and I just wanted to say thank you, thank you, thank you to everyone who made yesterday a wonderful experience.

Our view of the start of the 200m T44 race - Oscar Pistorius vs Alan Oliveira