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.

Where do these people come from?

Dear Reader,

You may notice that this post has no line breaks. This is not because I am a numpty but because, despite numerous attempts, Blogger is a numpty and will not put them in.....bl**dy Blogger !!!!!

As you'll see from below, We are in no mood for piddling about with Blogger today so We have posted the damned thing anyway.

My apologies if you feel that you need new eyes having scrabbled to the end of this post.

**********************************************************************************

A quick post and a fierce change of recent tone:

Someone came round today (mother of daughter's friend) and in conversation asked what I did i.e. job. I said that I no longer worked as I wasn't very well most of the time...my stock reply which tells the truth but doesn't go into the details.

Many people are either satisfied with this answer (they don't really care about my employment situation and they were just making conversation) or are too embarrassed to ask for further details in case I say I have something they can't cope with ---- like leprosy or syphilis etc. etc.

Anyroadup this lady really did want to know and asked for specific details so I told her:

'M.E.'

'That like M.S. then ?

'Well no not really.... a bit..'

'What is it then ?'

'Well, I get really tired very easily and have all sorts of aches and pains and catch infections very easily and have troubles with balance and memory and allergies and things ?'

'Like that neurone thing ?'

'Motor Neurone disease ?

'Yeah'

'No not like that either'

At this point she turned to my partner in such a way that her body language said she had shut me out completely. In the past she has always treated me as an equal (though given this incident I'm not sure that is a compliment !)

'Ah....you the carer then ?'

Partner: 'no...not exactly........'Cusp' looks after this place and the children and I go to work....'

I had been ignored and brushed aside as a 'cared for'. I could have flattened her.

As my anger was beginning to subside a friend of my son's came through the garden gate. As you may remember he has learning disabilities and this friend (K) goes to the same school.

'She his little friend then ?

'Yes'

'Goes to the same school does she'

'Yes'

'Ah....got a touch of Downs has she... ?' (this within easy hearing reach of K.)

'No she doesn't have Downs Syndrome'

'What's wrong with her then ?'

'Well I think she was born with brain damage'

'Ah....poor little thing....all the same though aren't they ...not well (in the sense of ill health)

...if I had one I've always said I'd still look after it just the same...can't help it can they..'

'Go on W. (her other child) go and say hello to her...you can watch her if you like.....'

(As if K is some kind of exhibit..........)

At this point I had to go indoors in case I picked up her lighter and set light to her as a metaphor for the fire raging within !!

Dear reader, my indignation is not because I now have a chronic illness which some would consider makes me disabled, nor is it because I have a son with various disabilities. I spent many years working with disabled people long before my son was born and long before I became ill enough to give up work. My indignation is at the ignorance and insensitivity of this woman.

Where do these people come from ?

Where have they been in the last 25 years? On Mars ?

Have they not noticed attitudes changing ?

Have they not seen or understood that we are all people who deserve respect and consideration regardless of disability, colour, age, religion etc. etc.

I am now in a very difficult situation since my daughter is very fond of her friend and she is, in fact, a very sweet and well-behaved child (so to give her her due, this wretched woman must do something right........oh Christ why do I always have to be so FAIR !!!!!).

On the other hand I'm not at all sure that I want my daughter around people with these sorts of attitudes.

Here is the thorny predicament of the parent not being able to choose the child's friends and letting them go out into the world and discover the dangers and dodgy attitudes for themselves.

I want to protect her...........................

Coming to terms with Disability

Now this is a bit naughty because, in a way, I'm cutting and pasting from someone else's blog (naughty, naughty....slapped wrist !...no, not slapped wrist, ....sorry everyone, very un-PC...too physical...I meant 'serious verbal admonishment).

Anyway up...

Seahorse over at The Beauty Offensive has been discussing her journey in coming to accept her disability, her new status as 'a disabled person' and the acceptance (or otherwise) of this status by those around her.

Reading her post I was moved to post my own comment and this, dear reader, is the power of blogging, because it was only in the writing of the comment that my own rather muddled and convoluted thoughts on the subject presented themselves to me on the screen.

I must admit I was rather pleased to have my ideas and thoughts presented so clearly to me and, having read Seahorse's response I felt I wanted to re-present them on my own blog.
So here they are, with apologies to Seahorse ( who is a very perceptive and lyrical personage).

You open up a really important issue.

Having worked with people with a disability for years, then having a son with a disability and now having become unwell and starting to realise that I am disabled, my life has been(thus far) an unfurling of understanding.

I’ve known about the social model (of disability) for years but it’s a different bucket of eels when you begin to think it might apply to you. I think we all have a degree of misunderstanding about others’ conditions and issues. What counts is acknowledging that and being prepared to listen to others and hear our own prejudices too.

My own difficulties are hidden. No one would know the difficulties I have from day to day, moment to moment and how hard I try and have tried to ‘pass’ as ‘OK’. (Now I have reached a stage where I don’t know why I tried to hide it ). I even did that when I worked for a charity that was all about promoting the rights of disabled people. Many other employees used wheelchairs or were deaf or visually impaired. Somehow, I felt that because I didn’t need those things I wasn’t really ill, wasn’t really disabled --- didn’t have enough points to join the Club (as one quite well known disabled artist said to me only partially in jest ‘I can call myself a crip because I am one. You can’t call me that because you’re not’!). It’s all about perception --- by yourself about how and who you are and by others about what they regard as
‘disabled’.

One more little story told to me by a friend who has a son who is autistic:

She went to a party with her three children, one of whom is autistic. He has only just reached the stage where he can tolerate such social occasions and where his mother feels secure enough to take him.

Shortly after they arrived she noticed a young woman staring and staring at her autistic son. (He has quite unusual mannerisms which can bring unwarranted attention.) My friend tried to ignore the stares and brush it off as the woman’s ignorance or her own paranoia. The young woman still stared and stared.

Finally my friend could bare it no longer and addressed the young woman directly:

‘Will you please stop staring at my son. He has a disability. He is autistic.’

Over her shoulder an older woman’s (the girl’s mother’s) voice said,

‘So is she’

Yesterday, another friend was asking me about this whole subject and where I thought I was with it all now --- after 7 years at home. If it wasn't for Seahorse I would never have been able to explain myself so succinctly, so thank you Seahorse for bringing the whole business to mind.

'ONE MILLION FOR DISABILITY' CAMPAIGN

‘One Million for Disability’ Campaign

The ‘One Million for Disability’ Signature campaign aims to collect at least 1 million European citizens' signatures to combat discrimination in all aspects of the lives of disabled people in Europe. The European Union must respond to the call of at least 1 million. The campaign ‘One million for Disability’ runs to 3 October 2007 and on 4 October 2007 the signatures will be handed over to the European Commission and the European Parliament. At the same time, a gathering of disabled persons, their families, friends and allies will take place in Brussels. To show your support visit www.1million4disability.eu or look at link on my sidebar.

Turning a corner

I've mentioned before that our eldest child is disabled. He has a variety of disabilities that affect his sight, mobility and he has learning disabilities too. All in all he is a lovely boy (and this opinion is not just my own bias) who has amazed us with his tenacity and positive outlook.

Yesterday I had a real peek through a new window. When he was born the outlook was very gloomy. Apart from the acute shock of our first born being disabled, there was a great deal of mystery about what exactly was wrong with him and why this had happened. There had been absolutely no warning during the pregnancy. The first few months were a blur of travel to this hospital, that consultant, this clinic, that 'Team'. Though we were both strong for him and for each other, for nearly three years I couldn't talk about the actual birth without breaking down in tears. The fact that both partner and I had worked with people with learning disabilities somehow made it all worse and better; worse because we knew (or thought we did) the reality of raising a disabled child and all the difficulties that brings and better because we knew the system and knew the ropes and, boy, does that make a difference. I cannot imagine what it must be like to suddenly deliver a disabled child and have no experience of that world at all.

Occasionally we would receive comments from well-meaning nurses and doctors about how our professional experience meant we'd be OK but this was different. This wasn't work. We couldn't pack up and walk away at 5.pm. and go home. This was our life and our baby's life. Our professional experience, in that sense made no difference at all

The details of all the ins and outs of bringing up our son may be for another time, but last night I collected him from his regular Monday Youth Club and suddenly I saw we had turned a corner. There he was, spinning the decks in the 'disco room' and coming out the booth to dance round with his friends, having a sneaky kiss from his current girlfriend. He was happy. He was healthy, accepted, had friends and was confident. He was contributing to that circle of people and part of a community. He was wanted and appreciated. Suddenly, for a moment, all the hard work came together and all the concerns for his future evaporated and he was just a young boy enjoying himself with no self-conscious dilemmas or fears.

I'll treasure that moment as I treasure all the others in his sweet life. Despite all the cliches he really is a gift to us and is very precious.