So what is ‘really disabled’ Mr Freeman?

rdd-logo-transparentHow can a politician decide-  over the expertise of a medical professional – that a physical disability is a ‘real disability’ whereas less visible disabilities are not?

It was with dismay that I read about the plans to restrict Personal Independence Payments to the ‘really disabled’ – so what does ‘really disabled’ mean? From the list published today by the Department of Work and Pensions, it basically means a visible disability. A wheelchair user or a blind person are quoted as being those in need of most support. However, if you have autism, a learning disability or anxiety disorders (plus many more) you are not in the eyes of the politicians ‘really disabled’ – despite being diagnosed by medical professionals who have spent years understanding how debilitating such conditions can be.

For those with rare diseases or so rare they remain undiagnosed, often the complexity of the condition means that there is a combination of both physical and non-physical disabilities. This is certainly the case for GG, my amazing and brave daughter.

Of all the challenges we face in supporting GG, the physical ones – are for us – the easier aspects of her disabilities to manage. I am not saying it is easy that GG cannot walk far and still needs to be lifted into her car seat – however, we are able to use her buggy or wheelchair when she needs it. The epilepsy is by far the most terrifying aspect of GG’s condition but fortunately for GG, there is medication to help, professionals to support.

However, on a day to day basis, the challenging behaviours which are the result of a severe learning disability are much more difficult to handle. We cannot remove GG’s anxiety with a physical aid, there are no tactics we have discovered so far that can help her regain control in the middle of a sensory overload, there is no tool for us to use to fill the gaps in her communication which results in frustration, screeching and meltdowns.

I know for many disabled people, the physical aspects of a disability are the biggest challenge but to suggest that a physical disability is ‘really disabled’ whilst the completely debilitating aspects of non-physical disabilities are not is ludicrous. For my daughter GG, and the 6000 children born every year who remain without a diagnosis, the lack of a ‘label’ is highly likely to result in an even higher level of questioning when what we really need is more support.

So who made the decision about who is ‘really disabled’ and what that means? None other than MP George Freeman who previously held responsibility for the UK rare disease strategy….

I was even more shocked when I learnt that the proposer of such changes was none other than MP George Freeman – the previous minister for life sciences with responsibility for rare disease. In a recent ‘All Party Parliamentary Group on Rare and Undiagnosed Conditions’, Mr Freeman outlined the work to implement the UK strategy for rare disease – stating that “nowhere is the challenge more acute or relevant than in rare disease”. More information can be found in this link.
http://www.raredisease.org.uk/news-events/news/rare-disease-day-2016-westminster-reception/

How can a minister who has had first-hand experience of rare and undiagnosed diseases, who has heard directly from families who manage such conditions on a day to day basis, in his next job take such a narrow view of disability as being the physical aspects?

On Rare Disease Day 2017 let’s make our views known to Mr Freeman and let him know that ‘really disabled’ comes in many different forms all of which need appropriate levels of help and support.

You can tweet Mr Freeman using @Freeman_George.

Please also see a further post I have written for Rare Disease Day 2017, published by Scope: 

Dear Mum and Dad of a newly undiagnosed child