Last night before I went to bed, I visited Planet of the Blind during my "blog rounds". Connie had posted about the case of the disabled children caged by their foster parents. She commented that she was surprised that there wasn't more chatter in the disability bloggers community about the case .
Then I went over to David's blog , Growing Up with a Disability, and noticed there was Connie in the comments section, discussing the case again.
I wanted to blog about it. I really did. I sat here for an hour. I watched videos online. I read some more news. I read some more blogs.
And I couldn't do it.
Today I went over to Planet of the Blind and Steve posted about it. He writes:
"People with and without disabilities should be up in arms about this story. But being up in arms requires that we repudiate the past twenty seven years of social policy. That's harder than asserting that the medical ethicists who were associated with the "Pillow Angel" case were basically forgetting the first rule of medicine which is of course, "to do no harm"." (via Planet of the Blind)
He's right, of course. When Ashley X hit the news, I was able to blog about it. But with this case, I'm sitting here mute. It takes alot to shut me up.
Why is this so hard? I think Steve hit the nail on the head.
Social policy is so ingrained regarding the treatment of those with disabilities that it's not only part of a system of assumptions widely held, but it's become a class and caste system. I know and feel this unconsciously - and consciously -every time I use a social service. My "role" within this social service system is well defined and when I step out of it, (which I often do) I am told about it. I enter a class and caste system when I accept social services. I hate that the social system presently defines me as "lesser than" those who extend the help to me.
If I feel that vulnerable, God help the children with disabilities in the system.
So what do we learn from this? Tacit acceptance on any level of the system as it is makes me - and all of us - a part of the problem.
What were we to do? asked the foster parents . No one wanted these kids. We gave them a home. The cages were necessary for this reason or that reason.
That comes from a class/caste system. How on earth were they doing these kids a favor by treating them abusively? In what barbarous society can neglect constitute care?
When testimony at the trial by caseworkers reveals that they knew about the caging and some thought it improved the childrens' behavior, how can we deny that the problem stems from our social system?
Neglect is rampant all over our social system for both kids and adults with disabilities. It flourishes in a society where we've defined those with disabilities as unwanted. It flourishes in a society where we demand that children with disabilities be grateful to have a "home" no matter how they are treated . It flourishes in a society when adults with disabilities are punished by receiving diminished benefits or threatened with loss of benefits when they speak up about inadequate care.
What does "it" look like every day?
- When we are given substandard meals in social programs and told to "be grateful you have something to eat"
-When we ask for more hours of caregiver assistance and are threatened with institutionalization if we "cannot manage by ourselves"
-When children with disabilities are left in abusive and neglectful homes and visiting workers ignore what they see
-When we are denied technology or devices we need to stay in our homes and/or work
-When we are told we are being "unrealistic" about wanting to work with our level of disability
-When we are unable to go to college, not because we do not meet the entrance requirements, but because there are inadequate services and assistance for the disabled
-When we are sent to nursing homes and other institutions against our will
And it looks like this - little faces staring out of bars, innocent and vulnerable children unable to speak for themselves.
10 comments:
I heard about this story a long time ago, when it was first discovered. As for why I didn't blog about it, it is just too stressful for me. It makes me physically ill.
Since Dear Son was born, my eyes have been opened to the difficulties of disabled children everywhere. I am very passionate about these children. As a result, there are some cases on the news that totally stress me out-and that is cases of abuse of disabled children or any child in fact. I have a hard time reading them let alone hearing about them because it is so disturbing and upsetting. I just can't handle that.
So why, could I write about the Ashley Treatment. Because I wanted to stop this treatment before it got started.
Good post, Ruth.
A system that allowed these parents to be overwhelmed with more children with special needs than they could handle really is the villain in this case.
This mentality that they were better off there than institutionalized says a mouthful about our care facilities for disabled children.
Well said. Thank you.
Janet
Thank you all for your comments. I'm receiving some interesting points of view via email-
"This case is so horrifying I can't even read about it"
"Glad you're giving the disability perspective - it's different than the way I thought about this..."
"... Those poor kids deserve to have people protect them and others."
"I am sick to my stomach reading about this but we need to get our heads out of our individual navels and start taking care of the most vulnerable people in our society."
I have a special needs child.
He couldn't understand that getting up in the middle of the night and, say, lighting up the stove, was a bad idea. So we all had to take turns sleeping on the floor outside his room so he wouldn't.
So....putting him in a "cage" to sleep so he wouldn't kill himself and the rest of us would have been evil...why exactly?
Look, here's the deal.
We parents are only two human beings. Someone has to work to support the family, all too often, both adults.
If a child is born (or adopted) who has special needs, everyone is in a real bind. Do we...do without shelter and live in tents? Do we cut back on food? The parents who need sleep because we too are moral beings, we are supposed to arrange that how exactly?
And these parents who took on more such children than they could handle... what exactly would have happened to these children otherwise?
You ever tried to do without sleep for weeks at a time, and work full time too? Doesn't someone who tries to do that, for someone else, deserve some kind of credit?
No No, we parents are all Bad People because we didn't rise to the impossible standards promoted here.
You are right, Susan - it is tough to raise children with disabilities. From my experience raising 2 children with disabilities, the biggest hurdles are the arbitrary, unnecessary hurdles put up by our society. I think what we need to work on is dismantling those barriers, working for more accessible health care, more affordable medical equipment, better social support of families and on and on.
Janet
Janet, you are Right On.
Why should my family, why should your family, bear the entire burden of these situations? Just because we're unlucky? We need to take better care of each other than that.
As for this particular family, I feel for them. They had too much to handle. What were they supposed to do, let these kids loose to burn down the house?
I'd be interested to read what I will never read, the story of what happened to all these severely impaired youngsters after they were removed from this home.
No one cares.
I think modifying society to better meet the needs of people with disabilities and their families is the place to put our energies.
But, in the meantime, while we live in this grossly flawed system, we cannot let the lack of support sanction abuse of our children. All of us need to stand up for those that cannot stand up for themselves.
Janet
I speak to many parents of children with disabilities who do not consider themselves unlucky, nor do they consider their children a burden.
It is atrocious that there isn't better support for parents of kids with disabilities, however. I agree with that. It doesn't ever ever justify abuse or neglect by the adults entrusted with the care of these kids.
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