I've been discouraged, tired, trying so hard to work on two different projects and keep up with friends on listservs, amid my need and pleasure in going to the Christmas OLLI parties, luncheons and the like, I'd given over trying to find a story that's important but might be overlooked. But I did find this the other day and tonight have the time to contextualize and explain further: this is about how badly autistic -- or mentally disabled in some way people are treated by the British health care system. Are you surprised? you should not be.
This particular story is about how nearly impossible it is to get the present institutions to take a disabled person whose behavior has become too difficult for their family or friends to handle into health-care for the period they need professionals to calm them down, or attend to some pressing need that would overwhelm an ordinary person trying to live his or her life (going to work, say, or attending to her or other people's needs) -- unless you let that institution take the person permanently.
Especially important are the young years of disabled people -- to give them the right support and good education between the years age 2 to 18; they need to be put into schools and spend time with people who behave in common ways and learn to live among them and gain skills to support themselves with dignity in lives that can interest them.
The real question is why this obdurate refusal to then let the person go home when they no longer need this help? I assume it's convenience and the work needs of the people in the institutions. What they care about is their salary and they want a stable population. why do they treat people so badly -- drug them into oblivion and don't give them adequate training or help to get out? They are not funded to do this. Employers don't want such people; they want to hire someone at the lowest wage possible to do a repeating job that will make money (profit for them). They want that person to be no bother to them beyond doing the job with a smile on their face and leave -- they don't want to recognize any other human obligation and want to be master of the interview. Society as a whole refuses to truly help these people or their families enable the person so live a better semi-independent ilfe.
The real give away is the advice to the people who leave the person in such a place _not to visit_ because it will upset the disabled person. That's because they want to leave the place and with good reason. Let that be the warning signal: when you are told not to visit that person you know they are in for a bad time, they are going to be forced to live an utterly controlled life which suits their masters.
From what I gather there is a similar gap in the French health care system. There I have read and met enough people to know that the problem at heart is people in society don't want to support the disabled, don't want to face up to how they have disabilities too and but for some luck could be in the same place. They want to see the disabled person as wholly non-functioning; It's easier; it separates them from the disabled, is less a threat to them.
Note that the writer of the article makes no attempt to explain why the institutions behave this way? I suspect it's because if you do, you are attacked. You don't understand you will be told. Ultimately the charge is you are sentimental. I am not sentimental and know how hard it is to cope with a strongly disabled person or someone with extreme needs.
Then look at the cruelty and indifference with which the person is treated. The treatment guarantees in effect the person will never leave the institution. Why is no money or not enough spent to enable them to leave, or train them on how to cope? If society wanted to do that they would. They don't. So left in the place, the people paid there behave the way they do to to serve their own needs. Thsi way they have a stable population which guarantees their income and is easy to deal with.
If you have had periods of disabled emotional inability or have a friend or relative have extreme behaviors, you know how they will be destroyed as an individual if you put them in such a place and I expect have done this only because there is no other option given you. I'd rather be dead than in such a place. I know my daughter given the right kindness, patience, understanding, and then gradual schooling over many years now lives a contented life with me and I helped similarly by my now deceased husband live a similar one. Are we not valuable as human beings? and we give back. She is appreciated by the hard long work she does at her library. Today I went to one of the parties I've talked of and was thanked by so many; I help give their lives meaning and enjoyment -- is this -- reading good books -- not worth something?
I know of so many cases where the person was saved because the relatives or friends were able to spend the money and gain the services to help the person when they were young. I know of equal cases where the person was thrown away and is now a "burden" on society and abused and used for those working in these institutions so they can get their salary. I feel strongly about this because I have many autistic traits and would have ended up destroyed were it not for my husband. He has left me enough money to survive comfortably until I die.
I finished my non-paying jobs for this term. Gratingly to me for a second time I got no money at the end. The money that the people put together in one place was used to buy me a gift certificate for $100 for whatever I wanted to buy at Politics and Prose. I was told I was not given money because the people wanted me not to "fritter" away the present. If I need toothpaste and it is good for me not to have to take out cash that often, who's business is that. I think the people are embarrassed to give me money. They think they are helping the store -- but the present is to me. Update: I did today manage to buy three junk books of sci fi fantasy, one book on how to do a barbecue with super-fancy machinery and gourmet recipes, all for under $100 with swift delivery and wrapping. So I guess they did me a favor these people. Now I feel I should thank them for sparing me -- I had gone to a cement-and-mortar bookstore and found they didn't have the "right" ones my daughter wanted, had trouble parking without being towed (and just for 1 hour) and saw what these dreadful books are. Yes I was spared.
I also got an expensive action figure, a compliment because it's a statue of Ruth Bader Ginsburg -- but Izzy and I could use the money. Last term I got an expensive orchid.
The doll is of someone who has spent much of her life trying to help others, to expand humanity and empathy as a principle. I am pleased and proud the case connected me with such a doll. I love the doll's expression of semi-grief in her eyes. Her hands are out as she wishes to put principles and laws in place for the sake of all others.