Monday, January 15, 2007

Reflections: The "Ashley Treatment"

The “Ashley Treatment” has been on my mind and in my gut all week – from the comments on my blog, to the words of other bloggers, to the media coverage, in discussion with others, and in my private thoughts. Being immersed to this level has been painful, thought-provoking, and enlightening.

I come back to my firm belief in the dignity of all people – not a dignity based on race, gender, religion, country of origin, economic status, or ability, but a dignity based on shared humanity.

I regret saying that Ashley’s parents lost their dignity by their action. I believe that each person’s dignity is God-given, and not losable. Many commenters felt that they were able to put themselves in Ashley’s parents’ shoes and faulted me for my harsh words towards them. In my strong emotion, I said that Ashley’s parents did not have dignity – this was wrong.

Like her parents, I believe that Ashley also has a dignity that is God-given. Ironically, very few people seem to be able to put themselves in Ashley’s shoes. Given that 1 out of 5 people in America has a disability, and that most of us will have a disability at some time in our lives through illness, accident or aging, this reaction should be somewhat surprising. But, to me it is not surprising - because those with temporarily-abled bodies cannot imagine themselves with a disabled body. And this lack of imagination and even fear can have disastrous consequences.

I feel weariness and sadness that we live in a society where a parent feels that medically and surgically altering a 6 year-old’s body to deal with growth is their only choice; a society where medical and ethical professionals actively encourage this desperate measure, rather than actively and creatively encouraging modification of our social systems to provide practical, economic, health, emotional and respite support of their clients (both child and parent); a society where many are angry with those who bring such injustice to light.

Blue/Kay Olson, of The Gimp Parade, has a reflective post expressing her weariness

“because fear and hatred of disabled people hides in people’s hearts in the same way as sexism, transphobia and racism.”

Imfunnytoo at Did I Miss Something also addresses the
“unbelievably systemic fear of us and hatred of us and labeling of us and arrogance towards us that this has opened up.”


Writing from the Birmingham jail in 1963, the Rev. Dr. Martin Luther King, Jr. addressed the importance of bringing hidden injustice to light.

“Actually, we who engage in nonviolent direct action are not the creators of tension. We merely bring to the surface the hidden tension that is already alive. We bring it out in the open, where it can be seen and dealt with. Like a boil that can never be cured so long as it is covered up but must be opened with all its ugliness to the natural medicines of air and light, injustice must be exposed, with all the tension its exposure creates, to the light of human conscience and the air of national opinion before it can be cured.”


I have noticed in my own life, in my talks with peers with disabilities, and in my interviews for my project that each person speaks of experiences in which they have been dehumanized – sometimes in an obviously hateful and discriminatory way, but at other times in a more subtle, seemingly “nice”, but equally dehumanizing, way, as though they are more “special” than other children.
Andrea, from Andrea's Buzz, writes,
It’s hardly not a new trend. But this millennia-old attitude does a terrible disservice to disabled people everywhere to be cast as either devils or angels. It is dehumanizing, and removes us from our humanity, and thus our basic human rights.

Being disabled is seen as a condition so horrid that no one could imagine living a happy, (otherwise) healthy, productive life. Not despite the disability, and not especially with the disability or even because of the disability. Being disabled is a fate worse than death. It turns a person into a “toxic train wreck” or it’s “worse than cancer” (because a person with autism, unlike a person with cancer, has a normal lifespan). So horribly unimaginable is being disabled that euthanasia is often deemed acceptable and even an appropriate “solution” to disability.

It has been not very long since people with various disabilities (and other differences) were routinely institutionalized (unfit for being in human society), and often sterilized. A person could be subjected to forcible surgery for such eugenic reasons as being blind, deaf, epileptic, poor, of a native (aboriginal) race, of mixed races, alcoholic, having a physical deformity, cognitive disability or perceived mental illness. Had I been institutionalized as a teenager, my children might not exist.

Being disabled is also seen as a condition where a family is divinely blessed to have been given such a special child who is looked after by angels. I’m not slamming those parents who feel that their children are blessings, but rather saying that all children are such – having a disabled child in the family does not earn a person extra cosmic “brownie points”.

The angelic disabled person is not-quite-human, a tragic but romanticized virgin on a pedestal of virtue. Certainly not an everyday sexual adult; a female person should never do anything as inconvenient as menstruate. Like 19th-century women, the disabled are sometimes cast as cherubic, above the base animal instincts of men, and held in divine favor.”

…“An insidious side effect of freakifying the disabled as devils and angels is that it not only creates the disabled as Other, but it also does a great disservice to those who view themselves as nondisabled: it makes a person glad to be normal, and content to be average. It perpetuates the divisions and reinforces the dualities. With such positions, we can never create inclusivity.”

For those of you with no personal experience living with or caring for a person with physical disability, there are ways of doing many of the things that are difficult. For example, I, weighing about 140 pounds, have a lift that my parents use to lift me off of the floor. I also have a wheelchair that reclines and lets me change position to minimize the wear and tear of staying in one position for an extended period of time. When I was younger, I had respite workers. These were people that were paid by our community support services, chosen by my parents, who took me out for fun, while giving my parents a break. I enjoyed spending time with them, we developed a good relationship.

Dream Mom cares for her 15 year old son with physical and cognitive disabilities.
“I thought it might be interesting to share with you, a few final thoughts on some of the concerns or issues that Ashley’s parents raised on their blog. The purpose of this exercise is to help people who do not care for severely disabled children, and to add some questions and/or comments as food for thought. Certainly every solution has its benefits, as the parents pointed out, like removing her breasts so she wouldn’t get breast cancer, however because it is a solution with a benefit, doesn’t mean it was the best solution for a six year old…”

It’s an informative post for those unfamiliar with the daily living with a disability. Of course, each person’s disability is different, and ways of doing things vary, too. But, the point is, people do and have found ways other than surgery to address daily challenges.

And when we don’t have a ready solution for a family’s challenge, let’s look at modifying our systems, before rushing to modify people.

Is it OK to judge a parent’s actions? If parents mean well, is that sufficient to justify a community letting them do as they wish? Recently, a story was in the news looking into parents who caged their children at night, because they felt it was in their children’s best interests, and because they felt it was the only way for the parents to get a full night’s sleep. We periodically see parents before the judicial system when they, for personal or religious reasons, refuse to give their children antibiotics or other medicines. A community does have a responsibility to be a safety net for children and to look at out-of-the ordinary situations.

Here’s what Penny Richards, from Disability Studies at Temple U, says
“Sorry… but ‘Never judge these parents unless you live in their home permanently’ just doesn’t work as a bottom line for policy. In a community, there are basic standards of decency that have to override parents’ decisions when a child’s welfare is at stake. We don’t let our neighbors hurt, neglect, or endanger their children, even if they say it’s all about love and they believe it’s for the best. We make laws to prevent it. And a disabled child has just as much right to that community attention and protection as any other.”

I do believe that each of us has a responsibility for one another. Standing up for the rights of all is challenging. It feels daunting to me. But, Ruth, from Wheelie Catholic, eloquently observes that the challenges we have faced living with a disability have prepared us well.

“…those of us with disabilities are able dealers, resourceful as a matter of necessity as we have had to adapt to a world that gives us unequal treatment in areas ranging from its architecture to its social programs .

By setting and maintaining seemingly insurmountable obstacles, our society has instilled in us the very traits we need to face the discrimination it is so reluctant to admit. We are resilient, strong and courageous.”

… “We must wade our way through the current waters of change, always keeping in mind the greater common good for our next generation. This means keeping an open mind not only toward the issues at hand, but toward each other.”

Again, I apologize for my out-of-line disrespect for Ashley’s parents’ dignity, while I continue to stand for Ashley’s dignity.

I intend to take the many lessons I am learning from this experience back to my interview project, as I continue recording the personal stories of people growing up with disabilities.

A further note: Agree or disagree, I welcome all respectful comments. I will, from here on, be deleting rude, foul comments.

8 comments:

Anonymous said...

David-

It is my opinion that you are doing an incredible job of dealing with topics that raise personal pain (for everyone, if they are honest and realistic) and issues that our community too often ignores.

It is so important to have these discussions. Thank you for providing a forum for people to express their thoughts, even if they disagree - respectfully and without being rude or attacking - there *are* ways to do that!!

The thing that most impacted me today about reading your post is that "But for the grace of God, go I..." I am most easily able to relate to Ashley's parents because I am a parent. However, for some strange reason, I always thought that I would very likely have a disabled child. I don't have one - so far - but I always thought that I would rise to that ocassion and do whatever I needed to do to love and care for that child.

Since my husband (I think you might know him...:)) has Type I Diabetes, I may yet get the chance to care for someone who is not able to care for himself... While I do not want that day to come (more for his sake than mine) the idea that we all are only moments away from being disabled - or caring for someone who is - is a very real one.

Huge kudos to you and your ability to share your thoughts and perspectives. Much needed and most honored.

xoxo,
Lee P. :)

Connie said...

Again I agree with Lee! David, I'm going to let you in on a little secret. In a previous post, you said a couple of things about Ashley's parents that I didn't quite agree with. In a long forgotten post I wrote I made the comment "I don't think anyone doubts their (the parents') love for Ashley." I was talking about how painful all this "scrutiny" must be for them. While I do not agree with the decisions that they have made for their daughter, I, being a parent myself, choose to believe that they do care for her and that they at least believe they acted in her best interest.

So why am I telling you this now? Because despite this little revelation, it is also the case that I left you a comment, two actually, applauding you for expressing yourself. And I'll say it again. You have an important voice in the disability community. We all do, whether we agree in principle or not.

I admire your taking ownership of your blog in this post. You apologized for what you wish you hadn't said, which is never easy, yet you are standing your ground for what you believe in (and for what you will and will not tolerate.)

Well done David. I look forward to reading your blog for years to come, whether I agree with everything you say or not! :)

Anonymous said...

David - You have provided such a rich discussion of this very hard- to-handle topic. Thank you for your thoughtful, reflective approach, and for continuing to look at this issue (and the other issues you have raised) from many angles. You are doing a marvelous job of educating your blog readers!

Eileen

The Goldfish said...

I reiterate what others have said about your handling of this, David.

Scope, a major UK charity which campaigns for equality for disabled people, has set up a petition to protect disabled children's rights, which might be of interest.

Anonymous said...

Another aspect where the modify the system v. modify the person comes into question is with the concern about sexual abuse. Surely, we don't want to address the issue of sexual abuse by removing uteruses, even if it's hidden within the walls of an institution.

Bennie said...

David, I'm not quite sure what brought me here tonight other than perhaps curiosity about how you are doing. In all honesty I think you are an extraordinary individual and I only wish the best for you in your future endeavors.

While you and I will continue to disagree about what is/was best for Ashley we can completely agree that MORE needs to be done to change social perceptions of the disabled.

Maybe some of the folks you have mentioned and their thoughts are correct. I honestly don't know. We parents do feel an obligation to protect you and overwhelm you with love because we know others will not do so. Is that so wrong?

You and your blog friends are obviously different than Ashley in so many regards so I still don't think comparisons are fair or justifiable. But by your example and your ABILITIES you give me great hope for my own son. I don't know what his outcome will be. I do know he exhibits a great deal of intelligence and strength that I truly admire. Honest to God it sends me to my knees sometimes and I'll admit to not being a very religious person at times.

I want this rift to heal within our community. It is so very important that we all get back on the same page and educate folks about you, my son, and Ashley - all very wonderful HUMANS worthy of getting to know.

Again, I wish only the best for you now and in the future. Truly kindest regards.

Mete said...

Well thought out post, very compelling. I love that this is a passionate, yet also compassionate, discussion about this controversial and often heated topic.

I still disagree with some points, but I whole-heartedly agree that we as a community need to watch out for all children, able-bodied and disabled. We need to speak up when we are concerned about a child's well being. It takes courage and conviction to stand up for those beliefs. I have to commend both you - and Ashley's parents - for showing that courage.

jen said...

Hi David! I've been pondering just what to say in response to your writings about the "Ashley treatment," but I haven't quite gotten around to a definitive comment until now. It's so hard to really articulate oneself without writing an entire novel of sorts!

I don't necessarily agree with your initial points about what Ashley's parents did for her daughter, but that's not my point. And I phrase it that way because they feel that they have done their daughter the best service that they can, and not many of us are in the position to judge that, mostly because many people like myself have not had opportunity nor necessity to deal with such disability at a personal level. Nevertheless, I wanted to mention that you've got a perspective entitling you to a heavier-weighted opinion, for lack of a better way to describe it. Your opinion holds more validity than that of many other people's for a multitude of reasons that you've listed yourself, although I've got to agree with some of those who state that Ashley's parents are the people who likely know best for her. Anyhow, I think you make some excellent points and you articulate yourself quite well, and I hope people take that seriously. I saw that there was some rather negative comments towards you as a result of your opinion, and I'm sorry those people responded as they did.

We'll never really know whether or not what Ashley's parents did for her was truly better than letting it all be; we can speculate, but we just won't know. I for one hope that things turn out for the best (and my thoughts tend to lean towards that being the case), since none of us can really help what's happened so far (and we probably couldn't help anything further either). I certainly think that most people who have voiced their opinions on this subject have done so with concern that whatever happens should be the best thing for Ashley; that is to say that most people have good intentions and are all interested in Ashley's well-being, and I think we can all look at that as something positive to have come out of these lengthy debates over the "Ashley treatment."

Hopefully that wasn't too much of a load of babble, and continue writing! I enjoy your blog and hope to read more.

/Jen