Wednesday, 10 June 2009

My godfather

called in yesterday. Dad had accidentally left the ‘phone off the hook – again – so we were not expecting him. Dad was out inspecting a sale of woodworking tools with mate Neville (Neville claimed he needed a band saw) so I made my godfather a cup of tea and let him talk about Tom. Tom is his grandson….the black sheep according to Tom’s father….the mentally off-balance young man in need of help according to his grandfather. I am inclined to his grandfather’s view. My godfather is a kind man, a very kind man but he is not under any illusions in respect of Tom. He knows Tom is not going anywhere in the world and that Tom is not going to get the sort of help he needs.
I do not know what you do with the Toms of this world. He should be taking medication. When he is feeling fine he does not take it. He does not understand that, because he takes it, he feels fine. If he is feeling bad then he will sometimes more than the recommended dose so that he does feel fine. At other times he will lash out or simply go back to bed. He does not persist. He needs a minder. He needs to feel good about himself. None of it is going to happen. But, at least Tom communicates after a fashion. There are no services for people like Tom. We have closed those in favour of 'integration' into the community - the 'dump them and leave them and, if we are lucky, their families will take responsibility' policy.
I blame disability activists for these policies as much as government. It is what the articulate minority wanted - and got. It is fine for them. They can communicate. They can handle the world. They can get aggressive and demand their 'rights'. The biggest problem among people with disabilities is an inability to communicate and, all too often, a fear of even trying. That does not matter to the articulate minority. That is what they are there for - after all, they claim, they know best. Do they?
After my godfather had left I headed for the library to pick up a book. It was a cool 12’C and showery with it. Despite that the girl is sitting in the rotunda in the park. Nobody else is likely to be there today so she at least has shelter. Early in the morning she heads for a local coffee shop. She buys the iced coffee that comes in cartons that she can choose for herself. That way she does not need to make any sort of contact with the people behind the counter. She buys chocolate in the supermarket. I think the chocolate is her lunch. Terri, who runs the coffee shop, has tried to make contact. I have tried to make contact. Nothing works. She spends her days wandering around or, more often, sitting in the park next to the library. She always sits alone. If anyone esle sits on the bench she has chosen she will move. Once, when she could not get into the rotunda because other people were there, I tried to get her to come into the library because it was pouring with rain and she was soaked through - but she looked so absolutely terrified I backed off rather than distress her more. I think she lives in a "group house" somewhere. It is run by a warden. The girl gets sent out at 8am and told not to return until 5 pm. She spends almost her entire day just sitting and staring into space. I find it frightening. I am frightened for her. I wish I could do something to help but she does not seem to want help or be able to accept it. She cannot relate.
I have talked to some members of the articulate minority about this situation. They insist "she is better off than she would be in an institution". I just think she is becoming even more vulnerable.


Adelaide Dupont said...

Services really are important.

It isn't just putting the people in the institutions.

Do you have a Mental Illness Fellowship or similar organisation in South Australia? Because they could put the godfather and Tom in touch with services. (And, yes, there are services, but there are very big waiting lists: hard when one in five have a mental illness, mostly anxiety or clinical depression). Also there are user support groups so Tom could talk with other users (the voice hearing groups might be good). I hope that he doesn't have a dual diagnosis: mental health issues and substance abuse too.

If people like Tom can communicate 'after a fashion' then they are likely to be reading and using this blog, and they could give you points from their perspective.

As for the girl, she reminds me very much of a woman of nineteen in America. Her story is told on the site Bipolar Soup Kitchen. I don't see how staring into space makes you vulnerable, unless it is the frequency and intensity of it. It's good to see she has developed her own coping strategies to go to the coffee shop, Lindsay has too. And she obviously likes the outdoors, even in the rain. It really must have been terrifying for her and discouraging for you.

catdownunder said...

Yes, "been there and done that" and more as they say. South Australia has minimal services and yes, there also has waiting lists....very long waiting lists. (One of our problems is trying to provide as much as a 'phone number for those in remote areas.) Tom refuses to identify with any group - a not uncommon problem of which you sound as if you would be fully aware of. His grandfather feels too old - he's 84 - and I cannot persuade him otherwise. He's just worn out and his daughter and her husband(Tom's parents) do not help.
The girl is at risk because of the people in her environment. I know she has 'lost' things on a number of occasions. Terri at the coffee shop says that she now comes out with very limited money - and someone called into the coffee shop to say that she had seen the school kids just walk up and take the chocolate from her. I talked to the school at Terri's request but the principal was not very sympathetic. (Mind you he was the one who also refused to do anything when a boy with cerebral palsy had his head pushed down the toilet and his books urinated on. His attitude - "they have to learn to defend themselves".)
I handle communication issues all the time and I know that it is much more complex than that! I just do not see that pushing them out all day is helping them at all. They need so much more but it costs and the present way of doing things is the cheap option, the cheapest option of all. It's a pretty sad reflection on the rest of us.

Motheratlarge said...

Grim subject. Good that you address it. And address it so well. In the UK this 'integration' is called Care in the Community. It operates, as you might imagine, along similarly brutal lines.