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.