Thursday, January 4, 2007

Human Rights

I don't have access to a television, so I won't be watching tonight's CNN show -- but will be. She plans to discuss things after the show. Over to you, Blue; these will be my last words on the topic.

After I posted last night, Wizard and I went to bed, deeply upset. Over night, you all left comments and links to the Ashley site. Thank you. At first, I couldn't read the page all the way through. I kept being distracted by my counter arguments to the points made. I kept being nauseated by the difference between intentions and outcomes of actions. Some things stand out.
  • Ashley has become the "ideal" medically shaped disabled body: she is now built for her carers and her environment. Our society will progress only when it accepts variation and adapts to it. A disability studies understanding of the interactions between body and culture is necessary here.

    Ashley will not get to exist in her natural body. Instead of looking at the societal and physical institutions that might make life for Ashley difficult and changing them -- instead of going all out for disabled human rights -- Ashley's parents pruned her so that she could exist in society's walls with as little physical discomfort they thought humanely possible. Ohhh. How wrong. Change the world not the person!

  • Human beings come in different configurations, physically, spiritually, intellectually, and relationally. We are what we are. The greater the diversity, the more rich we are as a species.

  • To "excise" Ashley's "buds," because, well, she won't be breast-feeding and has no use for them and because they might get big -- soooo excessively big that they are uncomfortable; yes, it is possible, but not at this stage, known for certain -- is to deny her the pleasure in her body.

    Sexual pleasure is natural. Kids don't have and don't need the full intellectual apparatus of sexuality to know that if you touch here, the feeling is good. Why shouldn't Ashley have that feeling? I am not suggesting that anyone touch her in that way -- explicitly sexual touch without full and free consent is not acceptable. But if Ashley can feel pleasure in the way her clothes fit her or in the movement of her clothes or her body, why shouldn't she? To take both her, at this point in her life, healthy breasts and uterus to avoid the possible pain of cramping and other menstruation related difficulties or disabled life-related difficulties is incomprehensible to me. Will menstruation be any more or less incomprehensible to Ashley than any other kind of excretion?

  • Ashley's parents call it "grotesque" for her to have a child's mind and an adult's body. That is a subjective and cultural judgement. It is not an objective fact. At what age, then, do people acquire the right to have an adult body? 8 months? 2 years? What if you will weigh, say, 350 lbs in your adult body and be 6 ft tall -- do you still have the right to burden everyone around you?

I was present for a good number of the sessions in which the Convention for Human Rights for Persons with Disabilities were negotiated. I listened to PWDs bear witness to involuntary surgeries on arms, legs, backs, and other body parts. I listened to stories of involuntary hospitalization and medication. I was appalled, but comforted myself that these were stories told by people 30 years and older. That was then. This stuff doesn't happen now. And if it does, it doesn't happen in America. Yes, that was naive.

Below are some important words. You can read the text in full here.

Article 15 - Freedom from torture or cruel, inhuman or degrading treatment or punishment

1. No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. In particular, no one shall be subjected without his or her free consent to medical or scientific experimentation.

2. States Parties shall take all effective legislative, administrative, judicial or other measures to prevent persons with disabilities, on an equal basis with others, from being subjected to torture or cruel, inhuman or degrading treatment or punishment.

Article 17 - Protecting the integrity of the person

Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.

Whether or not the medical "treatment" was justifiable, surely there is a case here that the rights of Ashley as a person independent of her parents' interest in her were not respected.


  1. Hey, thanks for this - I've been boiling mad about this all day but totally unable to articulate anything but, you know, rage. Great post.

  2. There are two huge wrongs here.

    First the involuntary alteration.

    Second: So many people seem to be appalled at the shock and yes, rage expressed by many about this.

    The fact that PWD's anger over this is not simply, clearly, and obviously understood means that understanding of disabled lives has a *lot* further to go than I wish it did.

  3. How many disabled persons have you taken care of? How many 130lb dead weight adults have you lifted in and out of bed and into tubs and into wheelchairs? How much help have you ever tried to get from you insurance company or the state? I bet the anxwer is zero. Try talking to a caregiver before you climb onto your soapbox.

  4. I know the answer to miz's question, but I won't take the liberty of speaking for my friend Wheelchair Dancer. I will just say: Miz, your assumption that WD has never cared for a disabled adult is wrong.
    And your assumption that WD doesn't talk to caregivers about disability issues seems foolish.

  5. Anonymous6:58 AM

    I think the disabled community is off base on this issue. Ashley's family has stepped forward to take care of their profoundly disabled daughter. They are taking this action to allow them to continue caring for her in the manner she has come to expect.

    Rather than applaud them, the disabled community has vilified them. The reason for the vilification seems to be the fears of the disabled community, and not what is in Ashley's best interests.

    The Disabled community had de-personalized Ashley in order to further its agenda, and that what is inhuman.

  6. Anonymous2:16 AM

    Just because people don't use parts of their bodies doesn't mean we should cut them off. If your crippled just hack off your legs.....It will make people more efficent in taking care of you. Everyone should just have their apendix out at birth.That way they wont rupture later. No more prostate cancer just cut it out. The truth is we will never no if the surgery did prevent any future pain but one thing is for certain....Having that surgery caused a lot of it. My heart and prayers are with you angel.

  7. Anonymous12:32 PM

    there are 8 billion people in the world. SHould the world change for each of them???? or should we all change, and all compromise in order to live together?

  8. Anonymous1:51 PM

    to *anonymous*

    Yes, I think it's time the world did start to change. Try thinking of OTHERS. Guess what, it's not all about you or me!!!

  9. Anonymous5:21 AM

    After reading all your comments, what is the real shame about this situtaion is we all try to take away peoples right to have an opinon. Who is anybody to say you have to have a disbled child to be able to comment on the sitiuation, this is where the problem lies no one thought of the child we all were quick to think of the parents and judging each others opinon!! Look around you there are thousands upon thousands of disabled childen who are able to go out, as well as disabled adults, we have taken advantage of medical science!! Carers have managed for years, and yes i do have first hand experience before you choose to judge my comment!!