Being Disabled on the Eve of the Vote

I have now been a chronically sick person for 20 years – probably just over 20 years if we count the years I was symptomatic without diagnosis. I was diagnosed with Multiple Sclerosis in 1995 and have since accumulated the labels of Chronic Myofascial Pain, Fibromyalgia, Disc Degeneration Disease in my cervical and lumbar spine, an haemangioma in my thoracic spine ( a benign vascular tumour) plus two osteochondroma (benign cystic tumours in my hip and shoulder). I have also had the following possible diagnoses thrown at me over the years: FND; Lupus; Osteoarthritis; Complex Regional Pain Syndrome; Hypermobility Syndrome. Some of these complicated disorders are the result of or are a label for a symptom of my main umbrella diagnosis. Others are possible alternative diagnoses which successive neurologists, rheumatologists, haematologists and orthopaedic surgeons have thrown into the dysfunctional soup that is my physical health. In the end it doesn’t matter what the label is; my symptoms don’t change and my ability to function doesn’t change. However, in the eyes of the Powers That Be this plethora of ideas and ambiguity means I am suspicious and possibly, or even probably, taking the piss. Added to this, on some occasions, I look completely okay. However, in my 20 years of being chronically unwell I have never felt more despised and unprotected.

They may seem like strong words, but today, on the brink of a possible Brexit win I am scared. Not long after my diagnosis and precisely three weeks after I was fired the Disability Discrimination Act came into being. It took several more years for the DDA to cover people with Multiple Sclerosis from the point of diagnosis, but it did mean that employers had to make reasonable adjustments in the workplace for you to continue working as long as possible. Benefits such as Incapacity Benefit and DLA meant that I had a safety net – once I had gone through the form filling, job centre interviews and doctor’s assessment. Despite the current government’s belief that people were simply ‘given’ benefits there was a process, a fair process, and the assessor was a fully qualified and independent doctor. There was such a thing as the Disability Right’s Commission, legal aid, and a support scheme from the Job Centre that enabled disabled people to continue working by covering the extra costs of travel, need for a personal assistant and specialist equipment. All of these things are either gone completely, or reduced and amalgamated with other departments to the point where they are no longer useable. Benefits are being stopped, or changed into ESA and PIP where the goal posts are frequently subtly changed to shave a few more claimants off the total. The change in PIP to measure mobility by the ability to walk 20 metres rather than 50 is well publicised, but on reading assessments it is clear that the assessors no longer measure pain as an indicator of difficulty walking or whether the surface is flat or uneven. Apparently a person who can manage, albeit in severe pain, to walk 20 metres no longer qualifies for the high level of benefit. Variants in condition are no longer considered, needing an automatic vehicle no longer qualifies as an aid or adaptation. Did you know that if you can drive a short local distance by yourself with no specific adaptations you no longer qualify for the high mobility level of PIP? This is why thousands of people are losing their Motability vehicles.

Did you know that subtle changes to care provision means that in some areas people on benefits will be paying up to £60 per week for their care – an amount higher than the care component of PIP? This does not change whether you are assessed as needing 5 hours or 25 hours of care. Did you know that in some counties married couples with a disability are being charged bedroom tax for not sleeping in the same bedroom? All of these subtle, under the radar, changes have chipped away at people with disabilities who are losing disposable income, their means of driving to work, their care and any avenue to question or legally challenge these changes unless they have their own independent means. This government wants to remove the right to judicial review and if the Leave camp have their way tomorrow we will eventually have no protection from the European Court of Human Rights. This leaves our hopes and rights in the hands of Boris Johnson, Michael Gove and Nigel Farage. I don’t fancy my chances. Some politicians and the media are lying to the general public about the ‘luxuries’ and ‘handouts’ enjoyed by people with disabilities. In the coalition years, our local Tory MP told my paraplegic friend that his and his wife’s disability benefits would be ring fenced. Since then they have had small reductions in benefits, a huge increase in care costs, reductions in services and lack of support from privatised parts of the NHS. For example, if you are a wheelchair user who uses the newly privatised wheelchair services they have to wait 48 hours to have a puncture repaired. Where previously they could have popped the wheel into a bike shop and paid for the repair using their Personal Budget, now they are unable to use that fund and must wait, with no other means of getting around, for that privatised service to get to them. Imagine two days on your bed with no ability to move around and look after yourself. What if we just removed your legs for 48 hours? How would you feel?

Sadly the media furore surrounding benefit handouts and popular TV series such as Skint or Britain on Benefits which demonise the poorest in society have had a knock-on effect for people with disabilities. People who use wheelchairs still seem to have the respect of society, although a friend was recently told by a supermarket assistant that he wouldn’t mind one of those disabilities if he could have a nice new car. Not all disabilities are visible or explicable and it is these people who are even further marginalised including me. Daily Mail headlines that tell the public about ‘Disabled People Given Expensive 4x4 Vehicles’ are untrue and never challenged or apologised for. Usually on reading such a story the truth (disabled people using the Motability scheme hire a vehicle which they pay for with their DLA or PIP; these vehicles are not free, the bigger the vehicle the more the upfront payment and they do not belong to the scheme user) appears about four paragraphs in. Sadly, all too often people only read the headline and not the detail. The Motability scheme is now ‘coincidentally’ being reduced through loss of benefit and a reduction in the choice of vehicles available. These stories are placed to incense and incite the general public so that when a change is made no one stands up and argues. Even the recent outcry about further changes to PIP has died down since the resignation of Ian Duncan Smith, but they are already being reworded, ready to be brought out again after the referendum perhaps in the hope that a reformed cabinet will push it through before a British Human Rights Act can be written?

I used to feel equal to anyone in society. I was not rich on benefits, tried to work when I could, and was able to save up over a period of years to tick some trip or other off my bucket list. I had places I wanted to visit before my illness worsened and mobility issues made it difficult. I still had ambition and took advantage of free college courses to retrain myself – this too was taken away in my last year of training as a counsellor, meaning I had to scrape together the final fees to qualify. Over the last few years my ambition, my hope and my fight have been eroded to the extent I feel like a different person. I feel so ashamed of being on benefit for my invisible disability I rarely tell people. I work permitted hours counselling others with long term disability and illness and I know I am not alone in these feelings. I feel hounded by the Benefits Agency, despised by my government and under suspicion from the general public. For the first time in my disabled life I have learned what it is to be a minority, to be different and to be looked down upon. I am frequently accosted for using disabled parking bays by people who clearly think every disability is visible and are influenced by stories of disabled people screwing the system. I have been followed down the street and harangued by a man convinced I didn’t need the crutches I was using and clearly offended by my ‘free’ car. Another man reported me for slightly bending the rules on my parking badge when visiting friends for more than three hours in an area with no visitor parking. In the discussion that followed I sustained verbal abuse over my ‘fancy car’, the fact I was using double yellow lines for slightly longer than allowed, and my ability to ‘trot back and forth’ to the car which he had been filming to report me with. I kept my temper on both occasions but was left shaky, ashamed and wary of going out on a good day in case I was reported. My 24 hour reality is so varied I found it hard to defend myself. I feel guilty for every day I feel well and I know I am not alone in questioning my own reality since others seem so sure of their ground in challenging me.

I believe this government has used the media to wage a war against the poor and disabled of this country. Stories are either fabricated or exaggerated to deliberately open the door for people like this to openly question me in the street about my health and my ability to afford a lifestyle close to theirs. There is a general feeling that disabled people should be living a much poorer life so that the ‘hard workers’ can see a visible difference between themselves and the undesirables. I am literally frightened for my future. I don’t know whether I will be forced out to work in the future – more than I already do – until my disability progresses to the point I am house bound and unable to be part of society. Do they want us behind closed doors? In nursing homes or workhouses? Do they want to drive more to suicide than have already died due to aggressive government policy against disabled people? I have never felt different. I have never felt lesser than any other member of my society. Now, I feel like an underclass – part of a plague that needs to contained or perhaps even exterminated? I don’t even feel that this statement is melodramatic any more. I used to say it with friends, as a joke or a warning only half meant, but now I can see that reality. 

Today would have been MP Jo Cox’s 42^nd birthday. She is the same age as me. However much some politicians would like it to be different, she was killed in the street for her politics, her humanity and her support for refugees, whatever their race or religion. Her killer was not the mentally ill loner some people would have you believe. He was a far right campaigner who objected to her support for refugees and immigrants, a support described by her husband as a politics of love, rather than the hate we have all witnessed during campaigning in the last few weeks. There are cases of people with disabilities being physically assaulted, even killed because they are a target for bullying and the type of incident I have described can spiral out of control all too easily.  I was reminded by a support worker that the verbal abuse I have been subjected to is a hate crime, but I didn’t do anything about it because I was still so shocked that someone I didn’t really know could hate me simply for being ill and needing some support from society. National Crime Statistics show a 25% increase in disability hate crime in the past year with a total standing at just over 2000 and state that this could come from increased reporting. However the National Crime Survey estimate this is the tip of the iceberg quoting a figure of 70,000 disability hate crimes and Mencap report that 88% of people with learning disabilities have suffered from hate crime. I believe this increase is linked to the media and government rhetoric and the steady erosion of our benefits and rights. In retrospect the Lib Dems may have had some influence in slowing down this erosion, because it has gained pace since a majority Conservative government came into power. Tomorrow is another huge turning point and I am one of many disabled people who are scared about the results. I am not necessarily inviting huge political debate although that will probably happen. I am not some great political commentator, but simply wanted to write about how society is making me feel. I am generally happy with my life and have a lot to be thankful for. I am a little bit Tigger-like in personality because although knocked down I do always get up again and carry on. Yet I find myself losing my bounce. It is becoming harder. This for me is about the value placed upon my well being, my worth as a human (despite my disability) and tomorrow could herald another step towards leaving me and defenceless and without hope.