Outside the Smokey day-centres I have no company. Unlike most autistic/asperger people, I am not reclusive. I do not like spending ALL my time alone. At times I have despaired very badly and been so stressed that I have become ill. The mental-health centres do not really help, I cannot find the companionship I need, with anyone who just sits and smokes and shows no interest in doing anything or anything I want to talk about. Last year, after wasting fifteen years of my life just existing in these places.
I made a formal complaint against the local state authority for not providing me with the correct type of services, which are appropriate to my needs. On the grounds of the Disability Discrimination Act and the Community Care Act the authority has a legal obligation to see to it that EVERY disabled person's needs are PROPERLY met, including those who have rare and unusual conditions. By expecting me to "make do" with only what there is, however inadequate, the authority is directly going against that legal obligation.
As a result of this complaint, the social services have granted funding to pay for an independent care company to meet my needs. All the workers in the care-company (and all other similar care services) mainly look after sick housebound elderly people and physically disadvantaged people, and do the domestic jobs the people themselves cannot do. The care-workers usually do such things as shopping, washing the clothes, providing meals, and taking people out in their wheel-chairs if they can ever get out at all. These things are not the kind of help I need. Some of these workers spend time with me at weekends, but they just keep me company. I now have companions at weekends who are employed and paid to keep me company. Companionship should not just be somebody's JOB. Friendship is not a commodity.
In this past week worse has happened. In Britain for about seven years now, students do not get GRANTS anymore. They have LOANS which have to be paid back. At the same time the government has been phasing in a system in which people with special needs have to pay a nominal fee, for any state-provided care, with their own money each week. Since June 19th 2000 I have to pay �11 each week towards my care. This has directly put me in a position of me actually buying somebody's company.
I don't mind paying if the carer is doing some actual WORK for me, such as cleaning the house, doing the garden, cooking etc, but in my case that is not so, they are there for only companionship. Friendship is one of the valuable things in this world that never should be bought. It is sad that anyone should ever be in this situation. Society are to blame for causing this with their unwillingness to give a "different" person the respect and equality in the world that they have every right to expect.
I hope to compromise that these people could help my do such thing as developing my music skills and maybe help me write a book, which would be some ACTUAL WORK during their time with me and therefore I would be off the hook of buying only COMPANIONSIP and doing something productive, ufortunately these people cannot do these sot of things wiht my because their job is to CARE for people.
Many people (including two mighty good social workers) have searched and searched but not been able to get me any volunteer befrienders, so I am now in a situation of literally BUYING "friendship". Even to put it inside commas is still an insult to the good gift of friendship. This goes right against all the better good things I believe in. I really want RID of situation, But I don't want to go back into being dumped on society's scrap pile, I want to keep my integrity, my beliefs in ONE piece. I have fought many years of anguish to keep it, I do not want to lose it now. I want to continue going forward. I do not and will not accept buying companionship. I care too much for what is right. If nobody ever cared about this there would be NO SUCH THING as friendship, God forbid, what an awful society we would have, I doubt it would be a society, just a horrible rat-race. I refuse to add another rat to that rat-race by becoming a rat myself. It is vital that all loyalty to good belief should be preserved. The people who have remained loyal to the better good things they believe in, are the ones who have given us all the freedom we have in our lives. In this situation, that what I believe in, is being held like a hostage to ransom. That is how much this "buying company" thing hurts me. You can clearly see how my back is against the wall.
Despair of loneliness or pay-up!
Can anyone out there help me. I know you are all too far away, but even just advice and and your thoughts will help.
July 2000
A number of weeks since the above article was written, I have finally decide not to BUY companionship anymore. I have discontinued mu use of the care organisation. Evryone I know including the social services understand an accept my decision. I feel better now that I no longer carry the burden of doing something against the better good things I deeply believe in. I cannot live with my soul being held hostage to a ransom like that.
August 2000