Sunday, 22 March 2009

Be Very Careful What You Wish For!!

A couple of posts ago I said "I want my drugs back". Well after another bout of horrible pain and another 4 days in hospital, guess what? I have my Drugs back - yep back on the steroids! And they want to cut a bit of my guts out to fix the problem this time.

I think they are being hasty so I am in discussion with the doctors about this one. An abdominal operation will be severely debilitating for me and could put me out of action for weeks and could result in me losing independence in some areas for ever.

As far as I have read in the official info they gave me the first time - cutting bits of the colon out is not considered the way to go in Crohn's disease. Some other Inflammatory Bowel Diseases it does work with. Of course I asked why they want to do it but of course didn't get an answer that I can recall. Probably cos they have just sharpened their scalpels and want to test them out!!!

I have had the initial bout and then this one. I reckon my disease deserves another chance with drug therapy before they get chopping and I said so. I have an appt with the Gastro mob on the 31st so will let you know.

I got myself out of hospital as soon as they would let me as I am learning how weak I get if I have to stay in. So four days after getting out I am nearly back to strength because I am in my own home and been using my normal environment instead of being hamstrung and having to have nurses lift me etc. Yay - in control!!


I now have an email address that you can contact me on if you want to. See at the top on the right above the picture of Harry.

Sunday, 1 March 2009

Eliminate the Negative, Accentuate the Positive.

Most people with a congenital disability and many of those with an acquired disability are caught in a cycle of negativity. For example, from the moment a person with a congenital disability is born the general reaction to their disability and therefore to themselves is one of negativity. As babies, toddlers and children they may hear people saying things like "what a shame she is like that" or "it's a pity she survived". The medical profession will talk about them in front of them about their inability and their deformed bodies or minds. They will be paraded in their underwear and poked, prodded and operated upon. The medicos will be the "experts", the ones who know how wrong these children are, and they will say so. Often opinions will be expressed as to the capacity of these children to "perform". Doctors and physios will say "she will never walk, talk, read a book, laugh, respond to you, drive a car, get married, etc". They will use words like deformed, weakness, abnormal, twisted. Often these children will not be expected to achieve anything, they will be teased by other children, stared at in public and avoided by other people. This is a cycle of negativity. This negativity seeps through to the child's core and leads to them having a very low opinion of themselves. They may see themselves only as useless and a burden. These feelings and beliefs last their whole lives through. Our whole lives through.

People who acquire their disability later on in life face similar treatment. Their lives as a newly disabled person will be catastrophised by others. Because they had a "normal" start in life they may cope better. They may have established themselves and their self-concepts before becoming disabled and therefore keep some of their self-esteem. But this cycle of negativity will affect them too.

We live down to these ideas. We live with feelings of inadequacy and rejection. Even talented intelligent people who are successful feel this way. English Artist Simon Parritt wrote in "My Views on this Exhibition" "I fear, through very painful previous experiences, that just as my body is rejected despite my other attributes, so my art will ultimately be rejected because of its source. So I have, like an ever-trusting idiot yet again, put my belief in you not to invalidate me."

In the past, and I think it is still the case, people with disabilities are often seen and thought of as useless burdens on society. I know I used to think of myself that way and it made me very unhappy. It has taken me many years of looking inward to discover who and what I really am. I have had to work hard to throw out all the old ideas and beliefs about myself. I used to believe that I was fairly useless. That I was a nuisance. That I was slow and weak. Lots and lots of negative stuff. But now I see the positive things about myself. I don't actually have to DO anything to PROVE myself. I no longer bust my guts every day to measure up to some normal standard. I have different talents and skills of my own that an able-bodied person will never have. I can see myself as I am and not compare myself to the norm. It has been a very liberating experience.

A man called Oakey Anderson of the Institute of Future Studies in Sweden said that for a country to be successful economically in today's world it must become a C SOCIETY. The four Cs. Our society must focus on Communication, Cognitive Capacity, Creativity and Complexity. I thought to myself "Well there is a society with a place for People with Disabilities".

We have heaps of untapped talent in all the four Cs. We have many alternative ways of Communicating - sign language, braille or perhaps just with our eyes if that's all we can move. And as for Cognitive Capacity. Of course there are lots of intelligent people with disabilities and also DIFFERENT sorts of intelligence. We have proof of that over the past two days. As for Creativity, well what a creative lot we are. We have to be very creative in using limited services, equipment, access and transport. We all achieve things that we would not be able to do if we tried to do them in the "normal" way. You should see how I pick up a heavy rock in the garden using my limited strength - it's a very complicated manoeuvre but it gets the rock where I want it! That leads me into Complexity, the fourth C. Our lives are very complex. In fact you could say that hardly anything is Simple for us. We could ask Sue who organised this conference how much more complex it was than if it had been a conference for non-disabled people. But we won't ask her cos it would take hours for her to explain the complexity.

So according to Oakey Anderson's theory we could think of ourselves as top notch. We could make this country successful economically if they would let us. One man who did let people with disabilities help him become rich was Henry Ford. He wrote in 1922 in his autobiography My Life and Work...

"I believe that there is very little occasion for charity in this world - that is, charity in the sense of making gifts. Most certainly, business and charity cannot be combined. The purpose of a factory is to produce and it ill serves the community in general unless it does produce to the utmost of its capacity. We are too ready to assume without investigation that the full possession of faculties is a condition prerequisite to the best performance of all jobs.

I am quite sure that if work is sufficiently subdivided - subdivided to the point of highest economy - there will be no dearth of places in which the physically incapacitated can do a man's job and get a man's wage. For instance a blind man was assigned to the stock department to count bolts and nuts for shipment to branch establishments. Two other able-bodied men were already employed in this work. In two days the foreman sent a note to the transfer department releasing the able-bodied men because the blind man was able to do not only his own work but also the work that had formerly been done by the sound men.

We have experimented with bedridden men - men who were able to sit up. We put black oilcloth covers or aprons over the beds and set the men to work screwing nuts on small bolts. This is a job that has to be done by hand and one which 15 or 20 men are kept busy.

The men in the hospital could do it just as well as the men in the shop and they were able to receive their regular wages. In fact, their production was about 20% above the usual shop production."

So if Henry Ford knew how productive we were 100 years ago why is there so much negativity about us. The acronym for Cycle of Negativity is C.O.N. CON. We must stop letting others con us with their wrong ideas about us. We must stop conning ourselves with old wrong ideas - ideas and beliefs that weren't even ours in the first place.

We know how hard we work and what we achieve with our disabilities. We know ourselves better than anyone. Better than Support Workers, Occupational Terrorists, Physios, Doctors or Service Providers. Certainly better than the people who shun us.

About ten years ago I was asked to do a workshop for people with disabilities who were considering entering university. I was told that the prospective students wanted information about how to fit in with the nondisabled students. My first thought when I was told this was "crikey, why is it that these people with disabilities think that they have to fit in with the crowd". So I changed the title of the workshop. I called it "getting the crowd to fit in with you". I told them that they don’t have to fit in with the crowd and that they should be themselves. I told them to help the other students to understand them so that the non-disabled students could fit in with the students with disabilities.

I told them how I used to have very strange beliefs about nondisabled people, able-bodied people. I used to believe that able-bodied people could do everything, knew everything and didn't help me because they didn't care. I believed all this stuff because of the cycle of negativity that I had experienced as a child. It was the able-bodied people who knew and said that I was wrong and crippled. It was the able-bodied people who tried to fix me. I didn't get any say and no one asked me what I thought. I didn't know how to make myself like them. And if they failed to make me like them then I believed that it was probably my fault. They seemed to know everything about me and repeatedly told me what they knew about me. When I didn't get the help I needed I thought it was my problem because it was my fault. I put able-bodied people up on a pedestal. The trouble was that they often failed me. I couldn't understand it. I thought it was because they were being selfish and mean. I became very hurt and eventually very angry.

So I undertook many years of psychotherapy to make myself feel better. I didn't know about the cycle of negativity then. I didn't know that my thinking was wrong. During that therapy I discovered a few facts. Three of the most enlightening facts that I discovered were: able-bodied people can't do everything, able-bodied people don't know everything and that generally able-bodied people don't help me because they don't know what to do or what's needed.

Before therapy I compared myself with able-bodied people. I measured myself against what they did. What a crazy thing to do. It would be just as sensible to compare an ordinary able-bodied person with an elite Olympic athlete. Does an ordinary able-bodied person get put down or put themselves down because they can't run a four-minute mile, complete a perfect high dive or lift 200 kilos? No of course they don't! Because that would be a crazy thing to do. I know able-bodied people don't have to hang around with elite athletes all the time. Most of us do hang around with able-bodied people all the time but we don't have to compare ourselves with them. We don't have to measure ourselves against their achievements.

Since therapy I have taken myself in hand. I've stopped waiting around for the ablebods to act or say something. I know what I can and can't do. And if I think I can't do something I at least have a good try at it first. I put my own value on myself. Everyone is valuable. Even Alice a person with a severe disability who can't move or do anything for herself is valuable. She provides an opportunity for someone to care for her, for someone to learn compassion and tolerance and patience.

I believe that the world is made up of individuals who are all different from each other for a very good reason. It's so we can learn from each other and have variety and excitement in our lives. Crikey it would be boring if we were all the same. Imagine a world without Elle MacPherson or Stephen Hawking or even Quasimodo. Anyone who has ever watched Quasimodo couldn't fail to see that there was something to learn from him, something that he could share with the world.

The theme of this conference is "Nothing about Us Without Us, Empowering Ourselves and Others". This is what we must do. We must be involved in things that affect us. In particular I'm talking about things in relation to our disabilities, about what we need to be effective and function in the world. So, that is the ‘nothing about us without us’ part. Then the next bit is; ‘empowering ourselves and others’. We can empower ourselves by throwing off the effects of the cycle of negativity. We can stop believing the rubbish that society tells us about ourselves. We can look at the positive things about us. We can think about the things that we do achieve and how we overcome the barriers that are put in front of us by society. We can celebrate our abilities. We can and must believe in ourselves because we are doing it. The proof is there every day. We can celebrate and knowledge the achievements of our friends who have disabilities.

We must also empower nondisabled people. We must set them right about us! We must tell them who we are, what we are and what we can do. We are the experts after all. How many times have you been let down by the knowledge and advice of an able-bodied person? I know I have many times. I don't want to be let down any more so I tell them what they need to know so that they can help me properly. We must stop thinking of ourselves as inferior and able-bodied people as superior. Able-bodied people are not superior they are just different. They are also ignorant about our true selves. We are the ones who can help them understand and know truly. This is what I advised those prospective Uni students years ago - help the crowd to fit in with YOU!

Another Englishman and artist Niel Marcus wrote in "How it feels to Exist"

"The world has bits and pieces of uncertainty concerning the handicapped, and that is why it is good for a handicapped person to say "hi". I have this strong feeling that the world needs to be shown some thing... the kind of education which is a human revolution. I have seen people wonder, "What should I say? What should I do?" These are very natural questions to ask. In the area of the handicapped it is the handicapped person who is going to settle all doubts and lead the way. This is why I say the world needs lo know that handicapped people exist. The world has something very special to learn, something very relevant to living."

Pictures have been running in the background throughout my talk. The first ones were from back in the 1800s and they continued right up to the present day. The photos in the beginning show examples of the negativity that surrounded people with disabilities. Some of them show in startling ways how our dignity was taken away from us when we were paraded up and down in long callipers. Two of those photos show pubescent young women with their developing breasts naked to the camera. The photos show restrictive and cruel equipment. They show wards of metal cots imprisoning children with disabilities in institutions. However as we moved through the photos we saw things looking better in the equipment department and perhaps even in the way we are treated. We have come a long way physically. Progress has been made.

We must come out of the dark ages in the ways that we think about ourselves and in the ways that we allow others to think about us. We must educate these people about us. We must set them straight just as they try to set us straight physically. We must embrace our wholeness because we are whole people. We must help them. As Niel Marcus said "the world has something very special to learn, something very relevant to living”. It's time. So now let us not be ever-trusting idiots yet again. Let's take charge!

© Glee 2004 May be quoted with acknowledgment.
Originally a conference presentation.