Simple question
As I mentioned, I am writing a post for a main stream publication on Growth Attenuation, also called the Ashley Treatment. (see here if you are not familiar) I just submitted it, I will keep you informed.
The reasons for the treatment typically start with talk of “quality of life” for the child. Really?
Here is my simple question. Does anyone know of any severely disabled person, or any disabled person, who has the ability to communicate, or gained the ability to communicate later in life, that has said “Damn, I wish when I was young my parents sterilized me, gave me a total mastectomy, took out my appendix for added good measure, and gave me lots of hormones. My life would have been so much better.”?
I’ve told you that the thing that scares me most is the day I meet Pearlsky in heaven and she can talk.
I’m damn glad I ain’t Ashley’s dad.
http://saynoga.blogspot.ca/2010/02/anne-macdonald-and-ga.html
Anne MacDonald had a lot to say.
I am in tears, I could hear the inner voice of my Ana in the words that Anne wrote. Thank you for sharing this.
Very powerful essay
Anne McDonalds’ essay helped solidify my opinion on the Ashley Treatment. As in, I was already against it, the essay just helped me realize that I’d be against it if I were in her situation. I have incredibly slight ataxic cerebral palsy on top of autism, which would have people metaphorically scream “BUT YOU DON’T UNDERSTAAAAAND!” ever so louder.
MacDonald’s essay is dismissed by bioethicists because it originally appeared in a newspaper and not an academic jounrnal.
Bioethicists, like most philosophers, spew crap that people either choose to believe or not. How many of these bioethicists have ever even touched a ‘tard?
Of course they dismiss the essay, it does not fit their idea.
I am no fan of bioethicists but you have dismissed an entire profession in one fell swoop. Without bioethicists understanding disability there will be no change in clinical settings. Eva Kittay a noted bioethicist has a “tard” daughter. She eloquently defends her rights as a human being.
Why would anyone with a shingle that says “bioethicist” know any better than I do about the ethics (or morals for that matter) of dealing with a severely disabled child? Why should legal decisions, changes in clinical settings, or anything else be based on the opinion, the thoughts, the philosophy of someone with that title? We are not dealing with facts, we are dealing with philosophy, ideas, and egos. Just my humble, and curmudgeonly opinion.
Using your logic a bioethicist like Eva Kittay is no different than Peter Singer. They both deal with philosophy, ideas, and egos. Again, I am no fan of bioethicists. But the fact remains these scholars are the first ones called when issues such as growth attenuation arise. If we do not engage bioethicists people with a disability will have absolutely no voice in bioethics. So a strange exchange–me actually defending bioethicists!
Why does that matter? Anne Macdonald actually experienced growth attenuation. Her opinion should matter the most in this debate.
Abso-freaking-lutely! Yes, her voice is the one to listen to. (but mine is a strong second … 😉 )
I am also a single dad with a disabled daughter. My daughter, Emma, is quadriplegic, legally blind, unable to communicate, and tube fed. She will soon reach puberty.
I do understand the motive for having GA procedures. Emma is at the 80% for height and weight. She is a big girl. I am also more than 50 years older than her so my ability to lift her and care for her is declining. As she becomes to large to easily transport it will have an impact on her quality of life. It is already having an impact.
Obviously, GA procedures would make my life easier but that is not what’s important. What’s best for Emma is what’s important. Emma is at the same time the greatest tragedy and the greatest blessing of my life. She has enriched my life beyond measure. She is unable to speak but she teaches me daily what’s important in life. She is legally blind but she shows me the way. My life has meaning and purpose.
People like Emma are here for a reason. She has lost virtually everything a person can lose and yet she is still the happiest person I’ve ever known. Overcoming in the face of adversity, I’d say she and others like her are the experts and we can and should learn from them. Ever wondered what life would be like without hate, greed, envy, and all the other vices? Spend time with Emma and you’ll get a glimpse of a better life. They call these people disabled but I’m not so sure. Maybe we are the ones who are disabled.
GA procedures would change the essence of who Emma is. There is nothing wrong with Emma the way she is. Why would I want to mess with that?