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 42nd 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.
