The Value of People with Down Syndrome
July 30, 2015 7:33 AM Subscribe
Karen Gaffney (TEDxPortland) speaks on history and present state of the value of people with Down syndrome. Gaffney (previously 1, 2), is the first living person with Down syndrome to receive an honory PhD and the president of an eponymous foundation dedicated to inclusion and advocacy.
Gaffney in an interview with the American Academy of Audiology
Behind the scenes with Gaffney's speaker coach, Amy Wolff
Gaffney in an interview with the American Academy of Audiology
Behind the scenes with Gaffney's speaker coach, Amy Wolff
We just had our first son, and he has Down's. Seeing people like Karen and what they can do makes me very hopeful (and less worried) for his future.
posted by triage_lazarus at 8:12 AM on July 30, 2015 [19 favorites]
posted by triage_lazarus at 8:12 AM on July 30, 2015 [19 favorites]
I am friends with two families who have children with Down syndrome. While there's obviously still a ways to go (particularly in providing systems and care and education for these kids), I'm cautiously optimistic about their social acceptance based on the way I've seen other kids interact with them and how they're treated in the school system.
I think there's been a pretty dramatic change in the acceptability of mocking or bullying kids with disabilities since the time I was in school.
posted by straight at 8:27 AM on July 30, 2015 [4 favorites]
I think there's been a pretty dramatic change in the acceptability of mocking or bullying kids with disabilities since the time I was in school.
posted by straight at 8:27 AM on July 30, 2015 [4 favorites]
I suspect that Karen Gaffney is deliberately playing up a pro-life angle in her personal story.
I'm glad that Ms. Gaffney is leading a wonderful, beautiful life. I would never judge, however, a woman who chose to end a Downs-syndrome pregnancy.
To that end, it appears that Ms. Gaffney is attempting to shame women into keeping pregnancies that they would rather terminate, and that is something that I cannot -- and will not -- support.
posted by Avenger at 8:34 AM on July 30, 2015 [25 favorites]
I'm glad that Ms. Gaffney is leading a wonderful, beautiful life. I would never judge, however, a woman who chose to end a Downs-syndrome pregnancy.
To that end, it appears that Ms. Gaffney is attempting to shame women into keeping pregnancies that they would rather terminate, and that is something that I cannot -- and will not -- support.
posted by Avenger at 8:34 AM on July 30, 2015 [25 favorites]
I'm glad that Ms. Gaffney is leading a wonderful, beautiful life. I would never judge, however, a woman who chose to end a Downs-syndrome pregnancy.
We should never judge any woman who chooses to end any pregnancy. I am glad that there are good examples of successful adults with Down's, though, especially for parents trying to make good choices for their family.
posted by roomthreeseventeen at 8:40 AM on July 30, 2015 [8 favorites]
We should never judge any woman who chooses to end any pregnancy. I am glad that there are good examples of successful adults with Down's, though, especially for parents trying to make good choices for their family.
posted by roomthreeseventeen at 8:40 AM on July 30, 2015 [8 favorites]
I hear you avenger, but I think the moral issue of terminating lives based on gender, race, or disability as a routine medical recommendation by doctors and various authoritative figures in a society or as a social trend is different than focusing on womens individual personal decisions around it (which should be respected as a private matter.)
posted by xarnop at 8:41 AM on July 30, 2015 [8 favorites]
posted by xarnop at 8:41 AM on July 30, 2015 [8 favorites]
I agree with Avenger that this presentation gives the not-so-subtle implication that an early diagnosis of a fetus with Down syndrome is a bad, unworthy reason for an abortion.
And I think she's in the right, kind of. The problem is that she's coming at it from — due to what I see is her extensively Catholic educational background — a distinctly anti-abortion angle. I think that real focus of her talk should have been that with a dramatic swing towards a social model of disability, and even the token gesture American society has made toward integrating disable youth into "mainstream" society, disabilities like Down Syndrome are not nearly as disabling as they used to be.
I think most advocates for abortion rights (including me) allow for the right of a potential mother to determine whether carrying a pregnancy to term is too much to ask. Too much to ask of her, of her finances, of her health, of her peace of mind, or her circumstances, whatever.
Anyway, if there's something to focus on in this talk, I think it's that we can collectively make Down Syndrome a negligible burden on expecting mothers. It can be something that we choose, as a society, to ameliorate. In the same way we should expect to make the world fair and accessible as possible for any child, we can do for this kind of disability what many hope to do for sex-selective abortion: we can make sex-selective abortion such a non-issue that is creeps closer to the historical dustbin. We don't need to shame mothers for sex-selective abortion; we need to shame society into breaking down the institutions and cultural inertia that make it seem like a reasonable choice.
posted by wakannai at 9:04 AM on July 30, 2015 [17 favorites]
And I think she's in the right, kind of. The problem is that she's coming at it from — due to what I see is her extensively Catholic educational background — a distinctly anti-abortion angle. I think that real focus of her talk should have been that with a dramatic swing towards a social model of disability, and even the token gesture American society has made toward integrating disable youth into "mainstream" society, disabilities like Down Syndrome are not nearly as disabling as they used to be.
I think most advocates for abortion rights (including me) allow for the right of a potential mother to determine whether carrying a pregnancy to term is too much to ask. Too much to ask of her, of her finances, of her health, of her peace of mind, or her circumstances, whatever.
Anyway, if there's something to focus on in this talk, I think it's that we can collectively make Down Syndrome a negligible burden on expecting mothers. It can be something that we choose, as a society, to ameliorate. In the same way we should expect to make the world fair and accessible as possible for any child, we can do for this kind of disability what many hope to do for sex-selective abortion: we can make sex-selective abortion such a non-issue that is creeps closer to the historical dustbin. We don't need to shame mothers for sex-selective abortion; we need to shame society into breaking down the institutions and cultural inertia that make it seem like a reasonable choice.
posted by wakannai at 9:04 AM on July 30, 2015 [17 favorites]
I'm very impressed by this person but I knew something was up when I heard, "for the way she has insisted on the holiness and limitless possibility of every life; from the breath of the Creator, the University of Portland humbly presents..."
posted by bonobothegreat at 10:47 AM on July 30, 2015 [4 favorites]
posted by bonobothegreat at 10:47 AM on July 30, 2015 [4 favorites]
Yeah, for people like me who are slow on the uptake, the University of Portland (a Catholic school) is not the same thing as Portland State University (an awesome public school where one of my friends works).
posted by hydropsyche at 11:16 AM on July 30, 2015 [3 favorites]
posted by hydropsyche at 11:16 AM on July 30, 2015 [3 favorites]
This makes me uncomfortable. I'm glad that Karen Gaffney is living a fulfilling life and breaking down boundaries. But she's got friends in ugly places.
posted by Countess Elena at 4:38 PM on July 30, 2015
posted by Countess Elena at 4:38 PM on July 30, 2015
Regardless of her religious perspective (and shame on those who would dismiss what she says in this video because of her affiliation with a Catholic university) the world would be a much poorer place without people like Ms. Gaffney. We have much to learn from people with Down's syndrome. Compassion, for one thing.
posted by Pararrayos at 5:34 PM on July 30, 2015 [3 favorites]
posted by Pararrayos at 5:34 PM on July 30, 2015 [3 favorites]
I love and respect several people with Down's syndrome. That doesn't mean that I want to take away women's right to plan their families and make their own decisions about reproduction.
posted by hydropsyche at 6:00 PM on July 30, 2015 [1 favorite]
posted by hydropsyche at 6:00 PM on July 30, 2015 [1 favorite]
Improvements in prenatal testing have led to decreases in Down syndrome births. I don't think it is in any way surprising that this would be disturbing to some people with Down syndrome and to their parents, that they would see it as a comment on their value as people and be out in public encouraging other families to carry these pregnancies to term. There is not enough help for children and especially for adults with Down syndrome in America -- it's a big burden to bear, particularly if you're not wealthy, and I'm not trying to make a case that everyone should choose to do it. But it's asking a lot of self-abnegation to demand people with Down syndrome *themselves* to have moderate views on the subject.
On an unrelated note -- each of my sisters has a child with Down syndrome. They seem to feel very differently about dramatic success stories like Karen Gaffney's -- one finds them encouraging and one finds them frustrating, and feels that they're taking on too much importance in the Down syndrome community.
posted by gerstle at 4:01 AM on July 31, 2015 [3 favorites]
On an unrelated note -- each of my sisters has a child with Down syndrome. They seem to feel very differently about dramatic success stories like Karen Gaffney's -- one finds them encouraging and one finds them frustrating, and feels that they're taking on too much importance in the Down syndrome community.
posted by gerstle at 4:01 AM on July 31, 2015 [3 favorites]
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posted by knownassociate at 8:04 AM on July 30, 2015