Sometimes I have a hard time getting my head around my illness and disability. I've been disabled by Ehlers Danlos Syndrome for so many years that living with the constant pain, fatigue and numerous other symptoms has become normal for me. It's only when I have to take a long hard look at my quality of life in terms of a Social Services care assessment or a disability benefits application that I realise how very disabled I am. It's quite depressing admitting your weaknesses but it's made me realise that what people see is can be a very different picture to who I really am.
If I post a picture of my dinner on Instagram and say, "I made this, it's so yummy!" you might assume that I am capable of cooking a meal by myself. What you don't see is the PA who took me shopping for ingredients because I can't drive or get my mobility scooter out of a car on my own. You don't see how I had to brace my knee and walk with a crutches so I can move around my kitchen, or how much pain and fatigue that caused me. You don't see my PA peeling vegetables or lifting heavy pans off the hob because I can't do it. You don't see me resting on my stool because the heat from the hob has made me go so dizzy I feel like I'm going to pass out. You don't see me pushing myself past my limits through the pain and fatigue or the muscle spasms in my hand as I chop and stir. You also don't see after taking that picture I feel too exhausted to eat the meal I just claimed to have made.
In my head I believe that I made the meal because I planned it and I oversaw the cooking of it but in reality if I had to make it from scratch on my own I wouldn't get past the first step. Did I just make that meal? Yes, but not really. It's not as simple as yes or no.
Herein lies the problem.
Physically disabled people today have to be Schrödinger's cripple - there is an expectation for you to be an awe inspiring role model, a paralympic athlete or successful entrepreneur bravely defying your physical limitations, but at the same time to get any kind of help from the government in terms of disability benefits or social care you have to be a invalided cripple who can't wash, dress or even convey food to your mouth, otherwise you get no help at all. Very few people can be both but just because you can do some things doesn't mean you don't need support in doing others.
I currently claim DLA, Disability Living Allowance but some time in the near future I will be migrated to PIP, which has a different eligibility criteria. The amount of money I receive each week could drastically change, I could get nothing at all or I could get almost £60 a week more. I have no idea which, that is entirely up to the decision makers. This is a great cause for concern for me because I rely on that money to provide the medical care, equipment and support that is not available to me on the NHS.
I looked up the eligibility criteria for PIP. It's all done on a points system and it's very black and white. My condition changes on an hourly basis so I find it impossible to say if I can perform certain tasks such as taking a shower or walking a certain distance because they are dependant on many variables and fluctuations of my numerous medical conditions. If I can do something one day there is no guarantee I can do it the following day, or even the following week.
To get the enhanced rate of the mobility component of PIP you must be able to walk less than 20 metres. How far can you walk? This might seem a simple enough question to answer but for me it quite complex. You might see me walk 20 metres on crutches from my PA's car into the GP surgery and think yes, she can walk 20 metres, but that is not the whole story.
You don't see how much pain and fatigue that caused me, you don't see how I had to make a maximum dose of pain killers and muscle relaxants when I got home because I pushed myself beyond my limits to walk that distance. You don't see the damage I did to my unstable shoulders by using the crutches or the pain I will suffer for the next week because of it. You don't see how I had to order pizza that night because I was too fatigued to even make a sandwich for dinner. You don't see how I felt too ill to do anything the following day because I overexerted myself from desperately trying to be normal and independent and walking instead of using a wheelchair or mobility scooter.
If the decision makers decide I can walk that 20 metres I wouldn't score enough points to get the Enhanced rate of PIP mobility component. In real terms that means losing £1,853.80 a year in benefits (or nearly £3,000 a year if they decide I can walk more than 200 metres) plus no longer being eligible for a Motability vehicle. That is a massive loss if you're struggling to survive on benefits or rely on the Motability scheme to be able to run a suitable car and retain your independence.
Iain Duncan Smith wants disabled people to find jobs and work their way out of poverty. He doesn't seem to appreciate that not everyone is capable of working, even with reasonable adjustments. You might presume I can work because I wrote this blog post but it has taken me several days of short sessions at the computer to compose this. If I were writing professionally I would be expected to produce this every single day, but even if I worked from home there is no way I could do that 5 days a week to an acceptable standard.
The government believe that working can help people with chronic illnesses but for people like me the physical stress and effort would make my condition deteriorate to the point where I would be bed bound and have very little quality of life. I struggle with just looking after myself, never mind working enough hours to earn a living wage. Leaving the house just to go to the shop on my mobility scooter can leave me so fatigued I can't do anything for a few hours and there are days when I'm not capable of doing anything at all - and that's when I'm well! If I get a virus or an infection which can happen up to 6 times a year, then I could be bed bound for up to a month. Just getting out of bed in a morning is work, never mind having a shower, getting dressed or doing a few basic household tasks.
This leaves me and thousands of other disabled people in a very difficult position. On the surface we appear too well to need financial or practical support but we are too sick and disabled to function without support.
What we need is understanding and support so we can manage our conditions and live a happy and productive life.
What we don't need is constant scrutiny, sanctions and the withdrawal of benefits and support services by people who have no understanding of what it's like to live with a long term illness or disability. We don't think we're entitled, we don't want to be benefits scroungers but with the right kind of help and support some of us might just surprise you and actually become that awe inspiring Schrödinger's cripple.
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