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“Disability cuts don’t affect me.” Are we all in this together?

This post is part of The Broken of Britain‘s One Month Before Heartbreak blogswarm.

In the New Year’s Honours list, MP Anne Begg was made a Dame for services to disabled people. Herself a wheelchair user, there was initially outrage when media outlets proclaimed ‘Disabled MP made a Dame’, the implication being she was made a Dame for being disabled rather than for her work. Hearing her comments on the news, that disability is not about being unable to do things, it’s about doing what you can, and that her wheelchair had liberated her, I turned to my family and said, “Well, she sums up exactly what I feel.”

I have been in an ongoing battle with a family member in recent months, over my choice to refer to myself as disabled, and my vocal support of disability rights. It’s not nasty, it’s just the elephant in the room. Unfortunately they cannot come to terms with the fact that I am affected with multiple conditions that cannot be made better. They’ve not got anything against those with disabilities, but they do buy into the belief that disability is all about wheelchairs and serious mental impairments.

Personally, since accepting my limitations as disabilities I have never felt more free. Instead of making excuses and feeling like a failure for all that I can’t do, I am proud of myself for all that I can do. In my mind, and indeed, Dame Anne’s, that’s what disability is about – being empowered to do what you can, and not being judged for what you can’t do.

I’m not receiving Disability Living Allowance. I never have. I applied for it in 2001, when I had been diagnosed with ME/CFS for 2 years (having been ill for many years before diagnosis), and I was refused. My Dad assured me that that happened to everyone, indeed it happened to his father who was unilaterally paralysed from a stroke. My dear Grandpop had admitted to being able to make himself a cup of tea. Apparently, making tea whilst semi-paralysed is equal to being able to fully care for oneself – to get out of bed and dressed without assistance, to get in and out of the bath, to cook a full meal etc. With my Dad’s assistance, he successfully appealed and received higher rate care and mobility for the rest of his life, which he used to pay for help. He also got a mobility scooter so that he was able to get out and about. When I was still able to walk home from school, I would often see him on a Thursday afternoon, happily heading for the local shops to collect his pension and buy sweets. My cousin even drew a fantastic caricature of Grandpop on his rechristened “Healy-Davidson”, the object that made the biggest impact on his last years of life. On the night he died, Grandpop called his sisters, telling one of them he was going to go out on his scooter, despite her protests that it was late, to see the sun set. I don’t know if he actually went out, but it’s a nice memory.

I never did appeal for DLA for myself though. I decided that at that point I ‘wasn’t disabled enough’ and left well alone. When I was diagnosed with Ehlers-Danlos Syndrome I again considered re-applying, but again, decided I wasn’t at a point to need it – I was working, had come off Incapacity Benefit, why did I need benefits anymore? I made a decision that should I become unable to work in the future, or needed specialist services or care then I would apply. I’ve stuck to that. For now, I am receiving enough benefits, more connected to my status as a single-parent having left an abusive relationship to not warrant needing any more. I don’t need any specialist services for now, I own a car, and I work part-time. That’ll do me for now. Besides, I don’t know where things are going with this, and frankly, I could do without all the hassle of filling in complicated forms and attending stressful assessments.

But there are thousands of people out there who are already at the point I hope never to reach. They are in need and the planned cuts and reforms of DLA will affect them. I have already said that I believe that disability is about doing what you can, and for many in receipt of DLA, that’s exactly what it is used for. DLA enables people to afford care, adaptations, aids, transport and other services that empower them to live their lives, to just do what they can.

When you’re not the one making the decisions, faced with spreading the budget as thinly as possible to make everyone happy, it is all too easy to criticise and get angry. But it is important to support the disabled, and as Dame Anne says, not to exclude them from society. DLA is not a work-related benefit. The vast majority of claimants cannot be forced to work by cutting them off. Indeed, for some it is the thing that enables them to afford the support to keep them working, productive and happy. It is estimated that half of working DLA claimants will have to give up work if the proposed cuts come into play. Ironically, taking away DLA will cause many to become the stereotypical ‘scroungers’ that the media loves to hate. Far from being empowered to take control of their lives, many will be left unable to get out, unable to access services. The upshot of this being that this may result in less people being able to contribute to society in a variety of ways, impacting on other areas of the system.

No, it doesn’t affect me.  Not yet.  But I am all too aware that one day it might.  I have heard people say “It doesn’t affect me,” without thinking it could happen to them too, and that makes me sad.  We’re all in this together, as they are so fond of telling us, so I will speak out about it. Because I care that if we’re all in this together, why disempower so many?

One Response

  1. Very well said. I care for my husband who receives full DLA & Mobility allowance. He doesn’t feel disabled as he not a wheelchair user. But I feel his quality of life is so poor that he’s worse off than many a wheelchair user. He uses his DLA to buy private physiotherapy that just about stops him from becoming further incapacitated. He’s not far off being housebound.

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