I am real: I’m the only me I’ve got

I have cerebral palsy (CP) and STILL my own family, friends and neighbours often do not understand why I have not found a job when “they know people in wheelchairs with jobs.” They have known me 35 years.  If they cannot see the problems I have what hope do people with less obvious conditions have? When will the man in the street understand that disability and illness require support and not a discussion of the politics or rights of Benefit Reform?

Bearing in mind how many of us with physical or mental disabilities suffer abuse (often daily) for our supposed ‘fraudulent’ claims,so-called fraud is a subject which is painful however it is discussed.  It is not at all helpful to people’s self esteem hear our friends and family or neighbours saying, ‘Yes, but one of the people I know is a fraud’ whenever we mention disability or our struggles to get government support.

Being unable to do full time paid work always was a source of pain to me and a large part of the reason why I, a person with many physical health conditions, ended up with depression, stress and PTSD.

People talking about ‘frauds’ is hard when you are disabled, when you too have been called a fraud, like a liar.  I have lived with people’s disbelief all my life. As a child, other kids would copy my walk and say that I ‘put it on for sympathy’. Now adults see me walk on sticks leaning on my husband’s arm and they do not realise that without him to hang onto I would fall, or they see me in the chair and think ‘well, I know someone in the chair and THEY can work…’ They cannot SEE pain, they cannot see mental turmoil, or PTSD from assault or a history of abuse or the  fatigue of struggling with pain each day for thirty five years.  They cannot EVEN see that I have cerebral palsy if they think that everyone with CP has spasms and talks differently!

I understand all too well how hard it is to have an ‘invisible’ illness or disability. Even though many people can see I am disabled, others choose not to.  With the rise of the tabloid witch hunts many people choose to see ‘one of those frauds’ when they a person on sticks or even someone in a wheelchair. They do not see the day to day struggles or what goes on inside my head, the memory problems, the dyspraxia, the dyscalculia, the fact that often I am not making sense of what they say or of what is going on around me, the fact that I cannot remember where the shops are let alone where I left my handbag or realise that it might be hard to work outside the home when you do not recognise casual acquaintances or people you have known for years and cannot remember what you did yesterday. they cannot (as I once observed to a particularly obnoxious bus-driver) see  a brain tumour.

It’s hard to say I understand what it is like to have a purely invisible disability when I am so conscious of a wonky gait and when I have disabilities that many people WILL accept as ‘real’. In some ways in a climate that allegedly focuses on ‘the genuinely disabled’ I may get less abuse than others with invisible conditions, yet what does a ‘genuine disabled person’ look like?  What does a ‘fraud’ ‘look’ like?   Where does ‘genuine’ start?

In the cause of discouraging fraud, people in wheelchairs get spat at, Sun journalist Rod Liddle encourages his readers to drag a young person in a wheelchair to the nearest Job Centre by their hair” http://politicalscrapbook.net/2012/01/rod-liddle-disabled-the-sun/ and over and over Ian Duncan Smith and the Sun adjure their readers to ‘shop a scrounger’.

I am (to most people ) ‘obviously’ disabled yet have had a woman try to push me over, REALLY push me when I was using a stick and I thought I’d be OK just walking around a park a few steps alone.  I never imagined that an adult woman would put her hand into the middle of my chest and SHOVE because I was in her way. I too have been told by a GP that I ‘just need a backbone’ and had neighbours sneer at ‘people like you’ or at my supposed ‘bad back’.

Even people who think they are being nice to me talk about how hard it must be for me to ‘see all these people with less genuine (!) disabilities getting benefits when I am ‘real’ ‘, while at the same time I have to listen to others telling me that their friend/ colleague /sister has my physical condition and is a swimmer/runner/accountant/physicist as if I am not trying hard enough and as if I am not already humiliated enough by my jobless state.

I am NOT going to agree with them that it would be easy for me to find a job if I just looked harder/tried harder/filled in enough forms/took a positive attitude because that would be to ignore the fact that jobs for people with as many medical conditions as I have are few and far between and that somehow I just need to see that my disabilities are not that major, that I do not really have a brain tumour, crippling fatigue and so much medication and medical paperwork that I lose track of all my conditions. That is to to buy in to the idea that somehow all I need is a bit of gumption. Besides, and they NEVER LISTEN when I tell them that INVISIBLE DISABILITIES ARE REAL because they don’t like to be told off by a disabled person.

Disabled and sick people forced to listen to the ‘one of my neighbours is a fake’ type comments have my total sympathy for the hurt that has been done by that person’s thoughtlessness. I’ve been there and it does indeed hurt a great deal more than any strangers ignorance could.

We work. It is not conventional and it does not mean that we could be working in Tesco but we who try to explain to the general public on a daily basis the constant battle to prove that ANYTHING is wrong with us if the Government says that we might  be O.K. is wrong are working.  I wish there was an answer to the pressure and the worry for disabled people except to stay strong and hang on to our self belief.  To anyone at the end of their tether today who feels tired, discouraged, disbelieved or doubted, please hold on to the love we who understand and know, feel for you and to the fact that many good friends and strangers daily express their distress and disgust for such bigotry.

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