The Reality of Disability

Print
The Reality of Disability

 

"My new year's resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades – fibromyalgia, or ME ... I think we should all pretend to be disabled for a month or so, claim benefits and hope this persuades the authorities to sort out the mess."

These were the opening lines of Rod's Liddle article in The Sun a few weeks ago. The aim seemed to be to shock, not to inform, not even to discuss. That must be because disability is a subject the journalist clearly knows very little about. Such ignorance and insensitivity shouldn't be and was not ignored.

Thanks to the online world of journalism, thousands of people were quick to correct his assumptions and highlight his uninformed prejudices. Rod Liddle became a main trending topic on Twitter and thousands of furious comments appeared on blogs and papers, many from disabled people or their carers inviting him to live with them for a while to get his facts straight about what disabled life really entails.

Although Liddle was not directly attacking those with genuine and serious handicaps, his article exposed a massive misunderstanding about the costs, benefits and wider implications associated with disability.

The fact that the feature was published (and perhaps commissioned) by The Sun, the largest circulating paper in the UK, indicates how many people may have no concept of how much disability affects so many people every minute of their lives. From simple things like getting from A to B, to not being able to find a job or a home. The lack of awareness is partly due to the fact that not many facets of disability make pleasant small chat. Describing the assistance some people need to bathe, use the toilet and get into bed tends to make most people uncomfortable.

But they are only a fraction of the difficulties involved. On top of these, parents of disabled people more than often suffer social isolation, financial burdens, guilt, anger, struggles to find babysitters, high divorce rates, detrimental effects to their other children and above all, serious uncertainty about the future.

John, 45, from Bristol has a 13 year old daughter with severe mental and physical handicaps, and his account of the importance of respite care reveals how many of the small things we take as the norm can be complete luxuries for those with disabilities and their families. He said: "For us respite care provides the chance, if only briefly, to be a normal family and for our other children not to be restricted in what we can do and where can go. In essence it means that we can access the kinds of places, activities and state of mind that are perfectly commonplace to other families. For example going out to places that might not be appropriate or comfortable for our daughter – how many restaurants, cinemas, theatres or museums, have changing facilities and a hoist for a wheelchair-bound 13-year-old pubescent girl? It means that we can go and visit friends at their houses, perhaps even stay over. It means we can take short holidays – not the summer fortnight so many families view as a right. It means that we can rediscover a flavour of the spontaneity that other families are able to take for granted. 'Let's all go swimming!' 'Let's go to the beach!' 'Let's not cook tonight but go out for a pizza and a movie!' Or, if we choose to stay at home: 'Let's have a night when the last thing we do before we go to bed isn't to wipe our teenage daughter's bottom and administer eight different medications.' 'Let's have a night without the baby listener on – wondering whether that heavy breathing is the sound of our daughter having yet another seizure.'"

These prospects are even scarier when disabled children grow up and their parents and guardians become old, vulnerable or die. Babies get a significant amount more empathy and affection than disabled adults and this is where a huge part of the problem lies. Most people, Liddle included, I imagine, would not argue against benefits being given to disabled children. However resistance and bitterness seems to rise as these children mature into adults. Are they suddenly meant to grow out of their disabilities and become self-sufficient? We need to recover the compassion that is lost when a disabled child grows into a disabled adult and the physical, mental and emotional gaps widen.

I went to the magistrate's court last week and sat in a case of alleged benefit fraud against a 50 year old man that had blatantly severe learning difficulties. He sat mouth open, dribbling, with a completely vacant expression, and little to no idea of what was going on. How could he, or rather why should he be treated and punished in the same way as a fully abled criminal for something he doesn't know he has done?

I understand it is a highly contentious and complicated grey area as there is never a clear place to draw the line in the law, but maybe there wouldn't be so many of these cases if there was greater understanding and support in society in the first place.

As demonstrated in the last month alone, disabled people are frequently affected by either cuts to funding or social discriminations. They certainly shouldn't be criticised for claiming help they are entitled to and require to live. Being suspected of fraud, whether officially or unofficially, only adds to their already significant obstacles.

Richard Hawkes, chief executive of disability charity Scope, said on their website: "The reality is that benefit fraud is rare – in fact more money goes unclaimed than is defrauded. Our polling shows that this narrative has coincided with attitudes towards disabled people getting worse. Disabled people tell us that increasingly people don't believe that they are disabled and suddenly feel empowered to question their entitlement to support. This backdrop of negativity will only make it harder for disabled people to overcome the many barriers they face when it comes to contributing to their community." He added, "Government's focus on alleged fraud and over-claiming to justify cuts in disability benefits has caused an increase in resentment and abuse directed at disabled people."

Scope's vision is "a world where disabled people have the same opportunities to fulfill their life ambitions as everyone else." But this is an impossible achievement in a climate of suspicion, where one's disability is often questioned, instead of facilitated.

Hannah Silverton Feb 2012

 

Join in the Project

make-a-donation

What are the benefits of short breaks for people with learning disabilities?

A short break offers the opportunity to make life less stressful for those invloced in the routine of community care.

It can benefit carers by allowing them to "recharge batteries" whilst responsibility for a loved family member who has learning difficulties continues to be provided

keep in touch on

Facebook  twitter34