10 posts tagged “disability ministry”
Surgery broke the law @ CNN.com
Writing on their blog, her parents said,
"Washington law specifically prohibits the sterilization of minors with developmental disabilities without zealous advocacy on their behalf and court approval," said Mark Stroh, WPAS executive director, in a statement."I absolutely agree this procedure should have been reviewed by a court," said medical bioethicist Arthur Caplan. "There was not enough due process to look out for the young girl's rights, so I think that was a severe failure in deciding to do this procedure."
Some disability rights advocates say they believe the Ashley case sends a clear message about the rights of the disabled.
"The implementation of the 'Ashley treatment' raises serious concerns about the continuing discrimination faced by people with disabilities -- discrimination which is often based in stereotypes about their potential and value as individuals," Stroh said.
Disabilities attorney Stephen Rosenbaum agrees. "I have a lot of compassion for this family. And I'm not here to shoot darts at them," he told CNN's Paula Zahn. "But they should know that Ashley has a right to develop as a human being."
It also had been stated in previous articles that Ashley was getting too heavy for her grandmother and other family members to pick her up. This article also states that Ashley is afraid of blood, so they didn't want to traumatize her with menstruation."Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc."
So, radical surgery was their answer. No fighting for church and community support? No home health aides to come into Ashley's home and assist the family with her care? No acquiring mechanical lifts that are available to transfer an adult from her bed to her chair to the shower, etc. No learning safe transfer techniques that exist already without the use of expensive mechanical lifts. No trying to find ways to help Ashley deal with her normal fears of blood and menstruation. Radical, invasive surgery was their answer.
My fears for Ashley are that with her small size, she will be even more vulnerable to abuse. If she were allowed to grow to her rightful size, she would not be seen as prey as easily as a woman who looks like a child, and she would not be as physically hurt if someone were to harm her.
In addition, I fear her she will ever be spoken to as a child, handled like a child, and thought of as 'less than', because often that is how we think of children. Spoken to and handled as a child for a teenager and adult is not only undigniying, it affects how the person treated as such sees him/herself. Perhaps Ashley will always see herself as a child and accept the lie that she is different than other people.
Perhaps she won't. Perhaps she'll have that feeling inside her that many of the people with profound cognitive and physical disabilities that I have known will have, the feeling of the truth that she is not 'different than', and that she wants to grow and change, like every human being. Then because she will may not have the cognitive awareness to know exactly what that truth means or the communication skills to express that truth, she may communicate her frustration in 'behaviors', such as noncompliance with caregivers, mood swings, and aggression toward herself or others, if she is able. This will result in psychotropic medication, and a Pandora's box of psychiatric treatment.
Are we as the Body going to leave people like Ashley to fight for their own dignity via their 'behaviors', or are we going to step up, and recognize their dignity and personhood and worth soley based on the truth that they are fellow image bearers of Christ?
This is Doris. I worked with her toward the end of her life. She reached her early 70's, quite a feat for a person with Down Syndrome. Without much thought we treated her as we would have any fearful and fragile senior citizen. Spoke to her gently. Helped her to her rocking chair in the living room every evening, put a shawl on her when she shivered. Of all the residents in the group home where she lived, we, both staff and residents alike, were the most respectful of Doris simply because she was older. It's a natural thing to do with the elderly. The oldest in the room gets the most respect. The fact that she had profound mental retardation didn't come into play in the respecting of our elder Doris.
But what if she didn't look as old, if she were 70 but with a strange look (and she would look strange) of a child, how would we have treated her then? Would we still have respected her 70 some odd years of life, able to see the evidence of her years clearly in her normally developed body?
If people with disabilities are to be included in all aspects of society,
and if they're to be respected and valued as our fellow citizens, we must
stop 'treatments' that keep them vulnerable and different.
The man who has the blog I have mentioned a few times on here, Disabled Christianity, and who helps lead a Sunday school class for adults with and without developmental disabilities has a video out about his class.
Here's another quote swiped from Disabled Christianity by Jeff McNair. He was discussing his frustration at a leader who didn't see how where disability ministry fit as a priority. You may have to go there to get it in its context.
I like this last paragraph in the post because it not only applies to disability ministry as a concept, it applies to personally. To everyone. It's something I never let myself think about. I never let myself be equal to others coming to the throne of God. I see myself in the back of the crowd, waiting my turn.
Making priorities on some level shows weakness, as I cannot do all things at once. If God does prioritize people, He is a weak God who cannot do for us all, love us all, minister to us all all at once. We need to wait our turn. The God I serve is not a God of priorities. He is all powerful, all knowing all everything. I don't need to wait in line for him to discover me and then make me a priority. He created me the way I am. I wish those in leadership of Chrisian churches would get a better handle on that. Get a better handle on who the God they claim to serve is.
This is from Jeff McNair's blog Disabled Christianity which I've referenced once here.
Comments about the Ashleys of the world
Regarding the story of the little girl Ashley, demeaned with the name, "pillow angel" a term which from a normalization perspective is sick in and of itself, I would like to make two points.
First, we cannot marginalize people and then criticize those who are left alone to care for marginalized people for their decisions. I wonder if the the adults in Ashley's life felt supported in her care, anywhere. Sure the wrongness of the surgeries stands on its own merits. We can criticize them. However, if we hope to avert a rash of such medical treatments toward people who inconvenience their families by their very lives, the community, and I would say the faith community, the Christian Church needs to come along side of those families and individuals who face the challenge of severe disability in their lives and provide support. Why aren’t the little Ashley’s of the world in the Sunday School classes of most churches? Yet we will criticize those who perform abusive surgeries. Where is the church at the birth of such children? Yet we will criticize the decisions of those facing the birth of a child with a disability who choose abortion...at least as a church I hope we will be critical of such people (I'm not sure we actually are). Obviously, the laws are not going to prevent families from stopping tube feeding, or performing radical surgeries on family members. However, if we as the community provide support to people challenged by the unknown of disability in their lives, those faced with the kinds of decisions the medical profession increaingly offers, will be less likely to abort, or create people who are further disabled by surgery, because they do not see themselves as facing their challenges alone. They see the experience of others in their community whose child with disability may be a value added to their families, or their churches or their communities. But those children have to be present and they have to be supported to change the minds of people tempted to do the wrong thing.
Second, the decisions relateive to performing the procedures on Ashely were condoned by a group of medical ethicists at the hospital where the surgery was performed. Well, medical ethicists are lost. I would love to know, for example, how many of those on the medical ethics committee who made the decision to go forward with the surgery, even know a person with a profound cognitive/physical disability. I wonder if any have friends with such disabilities. I wonder if any ever spent the day with a person with a severe disability. Decisions are made on the basis of ideas ethicists have about who those people are, and I would suspect they have largely never gotten past the notion of people with disabilities as “other.” My goodness, the medical profession has become rabid over down syndrome being prenatally diagnosed and those detected being aborted. These doctors are listening to medical ethicists when they say such abortions are humanitarian because they prevent a suffering, or poor quality life.
So lets point out the madness of the reasoning, and the surgery, and those who defend decisions by medical ethicists. But lets also take away the argument that the families faced with the challenges of raising children with severe disabilities are in it alone, by coming alongside of such families with acceptance and support.
McNair (fcbu)
This is an interview with Henry Nouwen, found at the bottom of the page here on the website of 30 Good Minutes. Nouwen was a priest who after two decades of teaching at the Menninger Clinic in Kansas and at the Universities of Notre Dame, Yale and Harvard, left to share his life with people with developmental disabilities at the L'Arche community of Daybreak in Toronto, Canada. I don't know what has become of his retreat idea, of which I would like to find out more, but I was intrigued by his experiences living with those with cognitive disabilities. I like what he says about God blessing this community of very poor people right in the midst of their vulnerabliity.
Also on this page, Henri Nouwen speaks about "Solitude, Community & Ministry: Three Ways to Create Space for God"
Interview with Henri Nouwen
Interviewed by Dave Hardin
Hardin: Henri, we were talking before the program that you are involved in building a retreat center which will hold retreats for all of God's people, including the mentally handicapped that you are so involved with. Tell us about that idea.
Nouwen: Well, Dave, I've been living at the Daybreak Community now for seven years. What I have discovered there is that our people, the weakest among us, have incredible gifts. Maybe not talents, you know, like playing the piano or writing, but gifts, spiritual gifts, like the gift of welcome, the gift of friendship, the gift of a smile. They are really beautiful gifts.
Hardin: Harder gifts to see, maybe.
Nouwen: Yes and I discovered that. Then I started to give retreats, small retreats, to groups of people in our community. I invited some of our most handicapped people to be with me and, in a way, to give the retreat with me. What I discovered is that when the people went home, they may have forgotten most of what I said, but they have never forgotten the handicapped people who were there. Quite often, they were the ones who moved them most deeply and, in a way, created a renewal in their hearts. Then I discovered that if it is true that mentally handicapped people have spiritual gifts to offer, I should build a little center where they can do that more and more.
Hardin: When you talk about handicapped people being part of retreats, would they just act as normal participants? What do they do?
Nouwen: Some talk; some cannot speak at all; some cannot walk and they lay on a cushion right there with me in a circle of people. Their incredible vulnerability is amazing. They are so vulnerable; they are so weak. In a way, you know, their weakness makes people aware who God really is. God is a God who became weak, who became vulnerable, who was born in a manger, who died on the cross.
It is not so much what they say -- most of them cannot speak at all -- but their presence is like the presence of God in their midst. They have a very concrete experience of the way of God's vulnerability just by these people who are with us.
Hardin: We don't see these people as fitting in, do we? We have a misconception about them that is very sad.
Nouwen: It is very true. Quite often people with handicaps, whatever their handicaps, are considered marginal in our society. They don't make money; they are not productive and all of that, but they are the real poor. Jesus said, "Blessed are the poor." Jesus doesn't say, "Blessed are those who care for the poor." Jesus doesn't say, "Blessed are those who help the poor." He says, "Blessed are the poor." That means the blessing of God is right there in their vulnerability, in their weakness, and that is what I experience. God gives enormous gifts to people who come to our community through those who are most weak and handicapped.
Hardin: These people who come and are, let's say, more average people, what happens to them? How do they benefit from these handicapped people? What is the process?
Nouwen: They live with us for a week and sometimes they are also invited to help the people themselves a little bit. They have a meal with them, but when they go home, they write us and say, "What I lived with you has opened my heart in a way that it would have never been opened unless these very big people were there. In a way, they changed my heart. They have encouraged me to become vulnerable myself. I am always trying to be so together. I am always trying to perform well and now I have discovered that God loves me in my brokenness."
Hardin: It is sort of magic, isn't it? We have got to end, but thank you. That's a marvelous process. We should try more of it. Thank you for being with us.
Check out Jeff McNair's blog. He was a facilitator of a workshop I attended at the conference for disability ministry. He's been a part of disability ministry for a long time, and he's got a lot of wise things to say.
