The problem is that in many cases, the opposition of quality of life versus length of life is used as a superficially polite way of introducing a discussion about whether disabled people should be murdered or “allowed” to live. That’s the reason why you will encounter anger from disability rights activists if you use that phrase without providing sufficient context. For many disabled people, it has some pretty scary connotations.

Yes, yes, yes. This bears repeating. Nearly all of the discussions of assisted suicide focus heavily on “quality of life” and not on “quality of care” – which might be more productive.

(disability rights lawyer over here)

The problem is that in many cases, the opposition of quality of life versus length of life is used as a superficially polite way of introducing a discussion about whether disabled people should be murdered or “allowed” to live. That’s the reason why you will encounter anger from disability rights activists if you use that phrase without providing sufficient context. For many disabled people, it has some pretty scary connotations.

Rachel at 88, good for you being ready to jump in and cut off what looked like the beginning of a noxious and ableist discussion before it could get going. That doesn’t always happen in Feministe comment threads, and it’s refreshing to see that political awareness here.

The stress that I make, that is obviously being misinterpreted, is that it is the individual who should have the say in defining the quality of her/his life.

That is just about the opposite of how you were coming across, particularly in your first (sarcastic) comment.

apologies for the serial posting.

And please don’t assume you know anything about my body and its abilities and disabilities.

I certainly did not do that, and did not mean to give you that impression. I am well aware that there exist people with disabilities who espouse ableist rhetoric. We are large, we contain multitudes, and all that.

The framing for quality-of-life was that the end of life should be in accordance with the manner in which the patient had led her/his life. Respect was given to autonomous choices even when those choices went against popular medical treatments, curative treatments, or palliative care.

That framing makes sense for someone who has already had a long life and can rationally decide whether or not they want that life to continue.

That framing makes no sense for someone who is 2 years old and will die unless she is operated on. If a baby is born with a congenital heart defect that will kill it by 6 months of age, do we refuse to operate in the hope that the child will develop speech skills and rationality and tell us whether or not it wants the heart operation before it dies?

The stress that I make, that is obviously being misinterpreted, is that it is the individual who should have the say in defining the quality of her/his life. Even if the self-defined quality shortens the length of life. Even if that quality is life-threatening.

That sentence is a classic case of ignorant, ableist rhetoric. Unfortunately, it’s also quite a common position; non-disabled people routinely underrate the quality of life of people with disabilities, and – as you have done – assume that people with disabilities per se have a lower quality of life. It is dangerous in the extreme to judge another person’s quality of life without knowing what that person experiences.

Of for crimminey’s sake. I have not assumed people with disabilities have a “lower” quality of life. I have observed that the majority of posters here, on this board, equate length of life with quality of life.

Lakshmi looked so freakin’ cute because at 24 months old, she was happy with her conjoined twin. I would love to see how she looks in the months to come and what the overall toll on her quality of life (and her maturing desire to have a say in that) will be. I would like to think she will remain as bright and happy. But we don’t know, do we, what that twin meant to her and to her life, even if it was medically life-threatening.

And please don’t assume you know anything about my body and its abilities and disabilities.

here it seems that, because of the cuteness-squee factor, no one seems troubled or inquisitive about the autonomy and consent of a 24-month-old.

No. Not even a little bit. Please do not assume that because I – and others – find Lakshmi charming and at the same time think that life-saving surgery was appropriate have somehow not thought through our position. As I said before, there are numerous articles, all over the web, detailing the dangers of Lakshmi’s condition to her long-term health. That Lakshmi is adorable is entirely unrelated.

And in both cases, posters did not/do not seem overly concerned about quality-of-life.

That sentence is a classic case of ignorant, ableist rhetoric. Unfortunately, it’s also quite a common position; non-disabled people routinely underrate the quality of life of people with disabilities, and – as you have done – assume that people with disabilities per se have a lower quality of life. It is dangerous in the extreme to judge another person’s quality of life without knowing what that person experiences.

Rather, feministe seems to take the stand that quality-of-life is really length-of-life.

I’m not feministe or the great line drawer or anyone else in particular, but I can’t imagine how dragging around the headless body of your twin, being unable to walk or urinate normally, and living in hiding from circuses that want to take you away for display is a quality-of-life advantage over being able to walk and play normally, regardless of the length-of-life issue.

I am not going to fall into the trap of refighting an old debate; I didn’t read a lot of the stuff about the Ashley X case because it was upsetting me too much. I can see from your comment, Q Grrl, that you don’t speak the language that people who are versed in the disability rights movement speak, so I can see how you might have put people’s backs up. It may be somewhat analogous to people who enter feminist discussions without speaking feminist language, and are assumed to be misogynists rather than merely ignorant.

But to address your clarifying comment, I agree that it would be desirable to thrash out what people really understand by informed consent, and what the exceptions are. I think that would be a very difficult discussion to have sensitively; a lot of disabled people have horrific experiences with the assumption that they are incapable of making decisions and therefore consent doesn’t apply to them. The fact that it’s a difficult discussion doesn’t mean it wasn’t worthwhile to ask the question, of course.