Hmm. I've been mulling this for a few days, since my younger sister (now 25) has Down syndrome. I have worked for a Down syndrome charity, and with a lot of children and adults who have severe learning disabilities, as have my parents since my sister was born; hands-on Mencap-related work has been central to our family life for the last 25 years. I haven't read all the posts, but here's my two-penneth:
I don't agree with a lot of Marrin's article. For example, she is right that we live in a physical beauty-worshipping culture - but this is not a behaviour/mentality I - nor most people, I would hope - would wish to encourage by terminating foetuses with mild, treatable/manageable physical deformities. Some of the statements she makes in the vein of disability being all grim are utterly incorrect.
However, on the basis of my own experience, there are some truths in what she writes - even if they need to be isolated from the negatively biased tone of her writing. IMO, these truths are:
Many children with Down syndrome are truly delightful and spread immense love and good cheer among their families, friends and communities. My sister did just this, well into adolescence; caring for her was, at times, hard work, but she lit up our lives, no question.
At least half of the adults I know with Down syndrome, however, including my sister now, do experience a less than happy life. My sister went away to residential college in her late teens, to learn life skills, and blossomed. She went, funded largely by my dad's inheritance from his mother's death, on the understanding that Social Services would fund her moving into supported living when she completed her time at college. They did not honour this commitment - on funding grounds (consistent with Marin's article) - and my sister came home to my parents' house to find my brother moved to another country, and me moved out, with my own little boy. This was over three years ago, and she has been depressed and anxious to varying degrees - sometimes frighteningly severely - ever since. Her newly learned independent skills have been lost, she barely talks anymore, she went through an incredibly long phase of bursting into heart-wrenching sobs at the drop of a hat - and because of her limited language and comprehension, there is little we can do to reassure her - and she can't articulate exactly why she feels so low. She has also developed OCD tendencies, including not wanting to come within a metre of me and, if I manage to steal a hug or a stroke, she brushes the area where I touched her - as if I'm contaminated, or something like it. Utterly heartbreaking. She cannot utilise the talking therapies - CBT, psychotherapy, group - that are available to the rest of us.
She has been on antidepressants for a couple of years now, and we have finally found a dose which means she is no longer tearful, and her sleep is no longer broken by anxiety attacks, and so Mum doesn't need to lay with her all night now. She also welcomes the odd hug now too, which is a relief. However, she is a shadow, a tiny shadow, of her old sunny self, and we have now realised we will probably never see her on full form again.
It has been a devastating few years, seeing my sister feeling so low and disappearing, almost - and seeing how much her day-to-day care has taken over my mum's life, and the campaigning for and management of her support services has dominated my dad's. It's their life. They are 59 and 55.
I know this is one example, but when I ran a social club for young adults who have learning disabilities, there were several other vibrant, fun-loving people with Down syndrome in the group. I have since heard that these young adults have now also become depressed, one of them has been sectioned, and they too are not their "old selves". My sister's learning disability psychiatrist has said that this is a common pattern among people who have more severe learning disabilities - not simply because of the disabilities themselves, but because as they hit adulthood and see their siblings, neighbours, peers on TV, etc, pursue higher education, undertake meaningful work, find partners and have children and the like - they feel left behind; excluded. The reality is that most adults who have a severe learning disability will not enjoy most of these things - and Marin is also right in saying that the activities and pursuits available to people who have a learning disability do seem to dry up as they grow into adulthood. At least they do where we are, and we have one of the most active local Mencap organisations in the country.
Also, the adult world is a lot harder to make sense of - and to adapt to - for a person who has a severe learning disability, than a child's world full of play, fun and free-flowing affection.
Consistent with Marin's article, there is not enough funding to give all the adults with a learning disability a fulfilling, semi-independent life, and the real life consequences are bleak - for people like my sister, and their carers too.
So, from my own experience, some of what Marin is saying rings true. And while, when pregnant with my DS, I would not entertain a single test being undertaken - DP and I were passionately committed to loving and supporting the child we brought into the world, whether disabled or not - I have surprised myself with how my outlook has changed over the past few years. Seeing my sister go through what she has (and to a degree, still is), and my parents, and knowing how much caring I have already done, and will need to do again in the future, I know that should I fall pregnant again, I may now undergo tests for Down syndrome. I never thought I'd say that, but that's how I feel. However, I don't necessarily know how I'd respond to the results ...
One last thought, though, is that of all the families I have worked with, who have a family member with a severe learning disability, there is one wonderful family who have had (and still do have) what stands out to me as the greatest care burden of all. The nature of their (now grown-up) daughter's disability is such that it would never be able to be detected in utero, yet the reality of living with it makes a treatable cleft lip seem like a relative walk in the park.
So it's not black-and-white, this abort-foetuses-with-obvious-disabilities business. On the whole, in spite of seeing close-hand a very bleak aspect of severe learning disability in adulthood, I'm with India Knight on this subject. However, I wanted to point out that some of what Marrin writes, albeit not in an endearing manner, is IMO correct.