Continued Conversation on the Ashley Treatment

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This graphic has the phrase Ashley's Treatment the treatment crossed out and replaced with the word "rights"

What do you think?

MODERATOR: Disability Rights Washington and the National Disability Rights Network have just released Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights, a report which examines the use of unnecessary medical procedures such as the Ashley Treatment and the withholding of necessary care and treatment such as food, medicine, or organ transplants to people simply because they have disabilities.

We want to hear what you have to say about this.

Some of the examples of discriminatory medicine described in the report include:

• The growing use of the Ashley Treatment (sterilization, removal of breast, and use of hormones to keep people permanently small);

• forced sterilization;

• withholding nutrition and basic antibiotics; and

• denying a kidney transplant.

The report prominently features input from a number of people with disabilities who talked about what they thought of the Ashley Treatment and their personal experiences with medical professionals and family members when making decisions about their health care, and more fundamentally their bodies. These conversations are being compiled into a documentary, a preview of which has already been released. Here is some of what people said in the report and video:

Parents do have rights … but not the right to do ANYTHING to their children. Ashley is not just an extension of her parents. Ashley is herself. – Joelle Brouner

There is no such thing as being too disabled. The doctors told my parents that I would be a vegetable and would not be able to do anything in life. If they could see me now. – Ken Capone

It does not make any sense [for the parents to say they did this to make it easier to take her places] because that is why they made wheelchairs and crutches to get around. They want to make it easier for themselves. – Thelma Greene

Photograph of David Carlson

David Carlson, Moderator

There is such a fear factor that parents of people with developmental disabilities have. People in the community are scared of us. It would be different if people in

the community had a different idea about people with disabilities. The fear factor plays into what people are thinking. – John Lemus

In addition to being the moderator for this forum, David Carlson is the Associate Director of Legal Services at DisAbility Rights Washington and was the lead attorney assigned by DRW to conduct the investigation into the initial use of Ashley’s Treatment.

3 thoughts on “Continued Conversation on the Ashley Treatment

  1. Christie says:

    I wish that there were more comments here because I believe this is a highly important discussion. For me the issue is that of who decides what constitutes appropriate or inappropriate treatment for a person who cannot express consent. There are plenty of people who can express consent and do express consent to have a hysterectomy, breast reduction or use growth hormones to become taller. There are also people who choose gender reassignment involving highly invasive procedures and the use of hormones.

    If we are truly to treat people with disabilities as people who should have access to human rights – why would we insinuate that a person with a disability would never choose a hysterectomy or other invasive procedures? That is moving to an extreme of speaking for all people with disabilities without acknowledging individuality. I completely agree that the mass sterilization of people with disabilities is a horrific violation. However, to go to the other extreme is also overlooking the right to be treated as an individual.

    How many people who can choose would choose to be bedridden for years? How many people would choose a life where they cannot enjoy being out in the community and spending time with their peers if it could be avoided with a medical treatment? I fear that we have missed the boat in looking at quality of life because of choosing the word “sterilization” rather than “hysterectomy.” Most people (including myself) who do choose a hysterectomy would never label “hysterectomy” as “sterilization.”

    Are we really claiming that “Ashley” would have a better quality of life if she could get pregnant – even though she cannot voluntarily consent to becoming pregnant? Would becoming pregnant improve her quality of life?

    If “Ashley’s” treatment would or could ever affect her cognitive function negatively that would rule out that treatment definitively in my book. I don’t see anyone who can choose choosing a treatment that would diminish cognitive functioning.

    I believe that there is another slippery slope here – one that we’re not acknowledging because we are afraid of the slippery slope of sterilization. That slippery slope is deciding that the right to bear children is the most important right that we should consider. When we do that we can all too easily miss an overall attempt to look at quality of life for individuals who cannot voluntarily consent to treatment. Who should make that choice? That is a huge responsibility – and if a person’s family is committed to keeping an individual at home and out in the community instead of placing them in an institutional-like setting – who are we to say that we think the family is wrong?

  2. C.C. says:

    Human Rights to 1)Life 2)Liberty and,3)Pursuit of Happiness.

    These are Ethical Rights. A lost EVIDENCE such as one out of three xray views qualifies the triague nurse to shove a boot and send you on your way.e your foot into your way.

    A block of intuitive medical diagnosis has for several eral years now been deemed *Evidenced Based Care* I have personal knowledge of MRI denial, pain meds pocketed by nurses, unauthorised changes to respiratory inhalers by a nurse for a head in ER.

    The distict bias against thefinacially fragile 11 or so years ago paramedics were told not to begin resesutaton on those who are on medicaid. This was in the newspaper.

    I pray for the fragile, faithful,and faithless as a Hospital Chaplain. May we all look above to The One Who Sees, Who Hears,Who Knows,Who Understands.God is not mocked.Amen

    Sincerely,rbtzn

  3. People are always tryin to play god, they decide who lives and who dies? what is more important than human life? how does someone put a price on someone’s life? who are you to say i have a disability? who says i can’t function because of my disability? who says i can’t work as a normal human being? how do you pick who is normal and who is not? people should have the right to all health care not just some, but who makes that choice for us?

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