Substitute

Today is Blogging Against Disablement Day: an idea dreamed up by dear Goldfish a few years back. This will be the first time I have contributed a piece. Let me say before you read it that all I wanted to explore was my attitude to disablement as it applies to me and my experience. I have been blunt and have used terms which I would usually never use. I am using terms others might use to describe disability or their ideas about it and their prejudices. In the end disabled people are often seen as 'other' --- in 'another room', belonging almost to another species. We are in fact all people with our own gifts, prejudices, insights and humour. What I have learned and know in my heart after 51 years here is that everyone has something to offer someone esle. I have worked with old and young, sighted and visually impaired, intellectually gifted and intellectually challenged, hearing and deaf, supposedly sane and supposedly unsane, able-bodied and disabled-bodied people --- and the most important word in that line is PEOPLE.

Speech over......on with the motley


The person who stands (well ---usually sits or lies) before you today is hewn from a rich mine of disablement experience. As a child my father was Head of a Special school and I would often go to school with him; playing happily with all the children and never really noticing or questioning any disability they may have.

Once I started school myself I was volunteering to work on projects with disabled people and after I left school I went on to work in Special schools, Day Centres, clubs and projects for people with mental health problems, dementia, older people, arts projects with a whole range of people. I worked in those dreadful ‘hospitals’ where the ‘mental defectives’ had been dumped all through the 20th century and before. I witnessed first hand the last vestiges of that cruel and despicable system and then witnessed the birth of the new system --- supposedly better and more enlightened but, in fact, just as blinkered and lacking in individual response to individual needs, without jargon or policies, as the old system.

Still, I loved the work.

I loved the people and the stories and the difficulties that I tried to help others overcome.
I tried to keep away from the upper echelons of the system for it seemed the higher up the ladder the ‘professionals’ climbed the more remote they became from the people they were working for.

And then the disabled world drew a little closer.

My father developed Alzheimer’s.
My partner’s dear mother developed the same disease and I watched her scramble down the same slippery slope.

The work I had been doing with older people with dementia became more personal.

My partner developed, for a time, an eye condition which led to partial sight and then our son was born and he was disabled ….. and with no warning I felt that now I really could claim to know about disability: the shock, the grief of having a disabled child with a syndrome which no one had heard about; a child who had all sorts of problems with sight and mental and physical development and who, it was supposed, would ‘never amount to much’.

The work I had been doing with visually impaired people became more personal.

The work I had been doing with people with learning disabilities became more personal.

At the same time I worked for a charity providing and securing services to disabled people and many of the staff had a variety of physical disabilities and sensory impairments.

I thought I had a fairly good handle on disability: the social model, the medical model, the perspective of the parent of a child who was disabled, the perspective of the child of a parent who was disabled, the carer. All day I worked with disabled people and came home to a disabled son and disabled parents.

I thought I knew disability. In fact I lived all around the edges of disability.

Knowing something and living it are two different experiences.

Seven years ago I became disabled and wasn’t prepared for the personal challenges ahead.
This was no dreadful sudden accident; no sudden disease. This was a slow insidious crawl towards being able to do less and less until my senses, my thought patterns, my sleep patterns, my muscles, my memory, my fine motor skills, my perception, all left me and I was left in bed all day for months barely able to sit up or eat, wash or dress, beae the light or bear the sound of my own children playing.

This was the world of M.E.

And no one took it seriously.
I was’tired’
I was ‘poorly’
I was ‘depressed’
Burnt out

If I complained about certain foods or smells or chemicals making feel worse
I was imagining it,
being hysterical
awkward

Gradually I made some progress.
I could make it downstairs and sit on a sofa for maybe 15 minutes

Now I was on the mend

My former workplace felt justified in phoning to ask questions about projects which had begun to falter without me at the helm. People began to ask how long it would be before I was back. I tried to describe how debilitated I was: that even a conversation on the phone of a few minutes could exhaust me; that I had no idea when I could return to work. Sometimes they called round

‘Oooh you look much better than we expected…’

That was when the penny dropped --- even in my addled brain; even these people I’d worked with for years, who were disabled themselves, could not see that I was as disabled as them. My disability was invisible. There was no sign round my neck that began to tell how little I could do, how impaired my functioning was. I had no badge, blue, orange or otherwise. I had no wheelchair, no cane, no obvious form of assistance or support and I had no obvious difficulty in communicating or understanding.

At best I looked like a ‘normal person’
At worst I seemed tired.
My disability was invisible

My disability was invisible to
My work colleagues
My friends
My relatives
My neighbours
My GP (who smiled politely and made nice noises but offered nothing but anti-depressants and graded exercise ‘til your heart begins to pump’)
and then it turned out it was invisible to the DWP, the NHS, the insurance companies, my pharmacist and almost anyone I came across unless they had M.E. themselves or a close relative with the condition.

And gradually the friends and work colleague lost interest.
I couldn’t join in the work-based debate
I couldn’t join in the gossip
I couldn’t go out and join in

Most painful to me was the fact that, as an artist-at-heart, I could no longer practice my profession. Not only was I unable to physically handle the materials but all ideas had evaporated, all intellectual inner-banter had faded and if I did get a glimpse of an idea as soon as I thought I had sufficient energy to put it into practice the idea and thought processes slipped away.

For this invisible condition there is little assistance.
My GP is next to useless
It seems it is almost impossible to qualify disability related benefits because I have a condition which fluctuates and which doesn’t fit into nice clear boxes on forms. So, 7 years from the onset I remain only ‘incapacitated.’

I cannot qualify for a blue badge though I often struggle to walk even a few yards and waste precious energy driving round to find a parking space near to where I have to go.

Over the last 7 years all I have been offered is a packet of anti-depressants every month
…….. and a grab handle for the bath from a sympathetic OT.

With all my experience of disability, professional and personal I struggled to understand where I came in terms of self-definition.

Was I able-bodied ?

Was I normal but ‘just ill’ ?

Surely if you’re ill you get better or die ?

I have done neither ---- just remained.

Am I disabled ?

Do I have what are seen as the common accoutrements of disability?: a wheelchair, a cane, a hearing aid, a guide dog ?

Do I have obvious communication difficulties ?: slur my words, make ‘inappropriate noises’, self harm ?

Do I need feeding, help with personal care ?

Do I ‘look funny’ ? ‘sound funny’ ?

Do I need a ramp to allow me access to a building ?

A loop system to hear a performance ?

The answer to most of these questions is ‘no’ or ‘sometimes’. Yet it seems that unless I can answer 'yes' to most of them I can never be seen to be disabled and yet I am.

I cannot take my old place in the world. I cannot take a part in normal society (whatever that is). I’m left on the margins because of lack of stamina, lack of an ability to fit into conventional timetables, because you don’t see my brain switch off, my head spin, my gasping reaction to your perfume, the polish on your table, the feeling that my legs will buckle, the sense that I have to lie down NOW.

I look normal. I look able bodied but, in the words of the song, what you see before you is a substitute for who I was.

I am invisible and shut away behind a mask of chronic ill health and closed doors.

I am a person with M.E.