From: "Mike Mulligan" > Date: Sun May 30, 2004 1:14 pm Subject: American Gulag -last one really on this subject
Shocks used to control autistic sonParents defend prod as best hopeBy Michael HigginsTribune staff reporterMay 30, 200 0405300211may30,1,4
If this wasn't important I wouldn't keep going on. In many ways I want to stop talking about it –but there is a higher purpose here.
David's father committed suicide with a gun with David playing athis feet. His mother came home to see that. You can't imagine what astory like this does to the employees. There are many more of them. So his mother's angle was, she just doesn't want to see David get hurt anymore. Does a mother who has seen such trauma, does she knowwhat best for her child?
A month before David's death –the mother and me had a long talkc about children. As you know my boy has mild cerebral palsy –we had a lot in common with dealing with the medical bureaucracy. She tells me David needs to get bigger heart valves –but she won't give permission to do it because David has been "hurt enough" in his life.
What does "hurt enough" mean –does it mean that she has been hurt enough? What did she have to tell me that for -why can't they keep it to themselves? Of all the peole in the world to tell this to -why was it me.
I told my manager –they were already looking to get me fired because I was complaining to upper management at this time. I told them, you got to have an ethical debate about this. I asked him, does David need a new artificial heart valve(s). He curtly told me it was none of my business and it was medical information between the facility and family, and he was under the best medical care available. I told him, well now it's my business because I heard the story –and I have concerns whether it right orwrong. He told me I was hanging on to this job by a thread -$9.00 an hour job.
I understand that Down's syndrome children have a high risk of death and have a shortened life span. I have seen many happy older Down's syndrome adults. I know there are many more Down's syndrome adults who are very difficult to control.
I wonder about the upperclass kids –I am sure it would be very acceptable with giving your child a heart operation and he could expect a normal life. So who was responsible for the design and structure of David's 15 year old life?
Did we design his life into being such a house of horrors –that the rational objective solution was that his life wasn't worth living. I mean, we are dealing with the objective evidence of what his life was up to this point. It was a life of horrors –and believe me, we knew what his life was in front of him. Of all the people in the world we knew what was in front of him.
Can you imagine what a life can turn too with a constant churning of uninspiring low paid care giver employees and managers. With these employees on the edge of being dysfunctional themselves and sitting in a boiling caldron of making profits and cutting expensive? These employees didn't come from our elite colleges. They weren't highly educated NASA shuttle astronauts willing to die for the thrill of the ride. There is a theory that many care giver employees come from children with dysfunctional childhoods –and they are trying to relive their earlier lives by care-giving for the disabled (with very dysfunctional skills).
Were we putting a hamburger between two buns at MacDonald's -an assembly line of despair into the foreseeable future? What do you think about this illusory "evidence" we build for ourselves that we are so sure of? We intentionally designed and built the structure, the foundations, and the reality of a human life. We declare it has no past or future value. It is a life not worth living. We balance a human life on the selective evidence that we collect for our own self interest. We discard and forget the evidence that condemns us!
David only mirrored to us the reality of our own miserable existence. He was only showing the image of us to ourselves -do you get that.
I ask over and over again –where have all the good people gone!
But I want you to know… I playfully wrestled with this boy on the floor. We laughed so hard at each other... and at the immoral system that was around us. You have no idea of being on the edge of dispair -and finding humor with a child. It felt so good.
We so loud. We couldn't catch our breaths. We disturbed the whole house with our noise, joy and laughter. Oh, David had such an easy and huge smile!
…and that I will never forget….
And the story about David will haunt me for forever and maybe change the world for a few of
us.
(I also seen him being restrained many times and I was involved in some.).
Thanks,
mike mulligan
Hinsdale, NH
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