Not “disabled enough” and mobility aids

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”.

Additional Note:

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.

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10 thoughts on “Not “disabled enough” and mobility aids

  1. I’m in the same boat. I’m not allowed an NHS powerchair because I am able to stand and take more than 3 steps. The fact that I can’t walk more than about 10 yards (in great pain and a rest at the end) and can’t push a manual wheelchair at all is apparently totally irrelevant. Rules are rules.

    I am lucky that I have been able to fund my electric wheelchair privately. Otherwise I would not only be housebound but often unable to get from one room to another. But never mind. I can “walk” 3 steps so its all ok, right?

  2. Like you say, it’s a ridiculous situation. Firstly, the comment about the flat being too small assumes that disabled people don’t (or shouldn’t) go out of their homes, and if the flat is the problem, well why don’t Statutory Services help her get a more suitable flat? Instead, they seem to be penalising her for having a small flat which is not her fault and is probably down to money issues (if it is private rented) or incompetence of local authorities in meeting needs of disabled people (if it is a social housing premises). How is this her fault?

    Also, THANK YOU for pointing out that disabled people don’t necessarily have friends / family / carers to support them. I’m SICK AND TIRED (sorry to yell, but feel strongly here!) of people and organisations telling me, when I explain that I can’t access their services without access adjustments, that I should “get someone to do it for” me. Who, pray tell, are these mysterious people who disabled people are supposed to have around them 24/7 who can do things for them? Since when did the Equality Act or DDA say that organisaitons don’t have to make adjustments and that it is up to us to have friends/family who can do things for us so that we don’t inconvenience those poor big profit making orgsnisations?

    I have a ‘hidden’ disability that is not classified as a mobility issue, but affects my mobility and co-ordination in various other ways. I get pretty much no help, and what I have had, I’ve had to fight for (with the help of my advocate) as Statutory Services don’t get autism and don’t seem interested in providing any services at all.

    It took years and 3 OT assessments just to get a smoke alarm that was safe for me, and that was only after the local fire service intervened and told the council that they were breaking the law!

    I still have no access to out-of-hours support, despite multiple assessments and specialists saying I need it.

    I want to try for a mobility vehicle as I have great difficulties making my way about due to autism-related issues and a pain condition, and am often stuck indoors for days unless someone can help me or give me a lift, or I can afford a taxi – but if you don’t strictly have a “mobility” related diagnosis, DLA won’t give you higher rate mobility unless you have what they classify as a severe learning disability with ‘disruptive’ behaviour. Aside from being utterly insulting language, what does that even mean? And how does it relate to the nature or degree of your mobility issues?

    “Mobility” issues come in many forms and statutory services just don’t get this. If you are unable to make your way about without significant pain, distress, or issues that could put you in danger, surely that is valid no matter what the anatomical source of your issues is?

    There is also some hypocrisy here too – if the Governent want more disabled people to work, how do they expect us to do this if they won’t give us the means to realistically be able to go outside of our homes? To be honest, they just seem to want to punish and deprive us out of being disabled, and sorry, but that isn’t physically possible!

  3. I too have EDS and needed a powered wheelchair to get about in and out of my home, but like Kaliya I also lived in a rather inacessible house. Thankfully the wheelchair assesor was lovely and took into account that I had applied for a Disabled Facilities Grant and gave the chair to me regardless.
    In the end after waiting more than 10 years and still not getting the grant from our local council, I was forced to beg and borrow the necessary funds and get the adaptations done myself! So now I have an EPIOC chair and an accessible house, but also have major debt hanging over my head and all the stress that entails!

    • WOW – that is outrageous… absolutely outrageous … the authorities dont realise just how much worse they actually make our problems 😦 xxxx

  4. 😦

    I’m waiting for a DLA tribunal and realised that even if I get it, the wait for anything might be prohibitive so I got an electric wheelchair off ebay for £60.

    I’ve got “invisible” CFS/Fibromyalgia and depression 😦

  5. I had the same problem, I need two hips and a knee replaced thanks to a childhood disease that left my hips deformed – I was turned down for an electric wheelchair due to enviroment problems and the fact that I can walk indoors, albeit struggling with two walking sticks or crutches. I was given a manual chair instead but I can’t use it as I have a heart condition, just going a short way leaves me with palpatations. I was more or less promised an electric wheelchair last year but the coalition came into power, cutbacks announced and wheelchair cancelled!

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