I shouldn’t be surprised by things like this any more and yet I still am. I woke up this afternoon to discover that one of the Founders of The Broken of Britain, Disability Activist Kaliya Franklin (@BendyGirl) has been denied an NHS power wheelchair. She’d been on a waiting list for an assessment for some time. Unfortunately her slim hope was dashed today..
The contentious issues seem to have largely concern the accessibility & safety of her small flat Unsurprisingly, the NHS have very strict criteria in place in order to qualify. Perhaps I am remiss in thinking that she still needs the power chair despite her flat being too small by NHS safety standards to use it inside. She does actually leave her flat quite often and even dares to travel from Liverpool to London, albeit with difficulty. It is especially at moments like those when a powerchair would be most useful.
For someone with the hypermobility condition that Kaliya has, Ehlers-Danlos Syndrome (EDS), trying to manage a manual wheelchair on her own carries the risk of dislocating her shoulders. In my opinion, having a flat that is not sizeable enough to motor around in is no excuse to decide that someone who desperately needs it for other reasons, can’t have it. Accessibility of the flat is also a concern, and fair enough I suppose. But if the person needing the chair can manage to get it outside and back in or has another arrangement, that should be enough for anyone.
Her predicament in general, along with my own, did give me pause to think about some the broader issues related to our need for mobility aids and access to motability schemes. What exactly qualifies as *disabled enough* for a powerchair, scooter or mid-level award of DLA that includes mobility? It seems to me the underlying attitude across the board is “you manage well enough without it so really don’t need it”. Here’s the rub: we try to manage as best as we can because we simply don’t have a choice. Many of us don’t have family, friends and carers on call to assist us with even the most mundane aspects of daily living. Being forced to manage shouldn’t count against us, but it does.
How is it right that more and more conditions, including mental illness, are seemingly falling outside the line of what some obstinately suggest is “real” disability? The same people who lionise benefit “scroungers” and disability “fakers” in and outside Parliament are making it very difficult to reach whatever personal and professional potential we have.. We need a lot more than the usual rhetoric about being self-sufficient and fit for work behind government and media-driven spin.
Try to put yourself in the place of someone whose body rebels against them and often at the most inconvenient of times. Imagine being alone to fend for yourself with a debilitating physical or invisible illness or both. You run out of toilet tissue, bread or milk. Your cupboards are near empty, but to save money you need to “nip down to the shops”; but you can’t because you either don’t have a mobility aid of some sort or you require someone else to be with you if you do. With or without even a basic wheelchair, many days it’s just enough to have the energy (or ‘spoons’ as some of us say) to attempt anything on your own. By the time you have managed visits to GPs, physios, OTs or even a job, it’s all you can do to make it back to the safety of your home relatively unscathed before collapsing. Heaven forbid if you want or need to travel further afield whether it be for business networking or to visit friends or family.
What hope is there, really, when disabled people can’t count on much-needed mobility aids because even as a private tenant our housing is a safety hazard because it is “too small”.
Kaliya wants to stress that the OT did her absolute best to find a way through the system but was unfortunately was as trapped by the rules as we are.