living with Down Syndrome

It happened again this morning: someone referred to folks considered ‘odd’ as perhaps being able to benefit from ‘treatment.’ I don’t know how parents of kids diagnosed with autism take the use of ‘on the spectrum’ to describe someone whose personality or behavior seems persistently at odds with some social conventions. (I’d be interested to hear.) But as a parent of a teenage girl with Down Syndrome, I find the comments worrying. Not because I  oppose the treatment; early intervention really helped Anna. My worry is that we’re narrowing the range of what counts as human and increasingly expecting that whatever goes wrong can be set to rights with the help of such interventions. It can’t. Not everything has a cure.

At the other end of today, I tuned in to a BBC 2 programme, ‘A world without Down’s Syndrome?’ Sally Phillips’ documentary highlights the wonderful possibilities for people with Down Syndrome. Articulate and accomplished people have overcome so much to get so far, and it is amazing. Eighty percent can learn to read; very many will hold jobs and live independently. We meet an actor, an advocate (Karen Gaffney; check out her TED talk), and an Icelandic woman who became famous after writing an article defending her right to life in a context where 100% of pre-natal diagnoses of Down Syndrome lead to terminations. Not every story is like theirs, but the message is clear: having Down Syndrome does not necessarily stop someone from having a fulfilling life. And it certainly doesn’t stop someone bringing joy to others.

The most awkward moment of the documentary, though, comes when a researcher in London asks Sally about what she wants for Olly, her son, should he outlive her. It wasn’t really a fair question. For the parent of a child (of any age) with a serious developmental delay, it can be an utterly terrifying question. Because we stand between our children and the world that would rather they not exist. Because not all of our children will achieve independence. Because we know that, however difficult it may sometimes be to care for children (including grown children) with special needs, they are not simply a ‘burden’. The unpredictable magic that our children bring to our lives happens because of the relationship we have with them. Without a relationship of love, commitment and understanding, the needs cease to be special: needs are simply a drain on the limited resources of our society. The implication of the question is clear: it’s all well and good for you to have this lovely time with your child now, but who will take care of him when you’re not around?

As long as that is the basic attitude, it’s not surprising that the two possibilities, when faced with a diagnosis are cure or elimination. If we can’t cure it, then we ought to get rid of it. But that all depends, I think, on what it is. What does it mean to be human? As long as the answer to that question consists chiefly of capacities and achievements, we will not be able to find a place for people with developmental disabilities in the world. But if we realise that being human means living with what comes our way, we might just find that they have a lot to teach us about our common humanity. Not everything we encounter in life will submit to our will, whether accident, illness, disaster or loss. For so much that ails us, there is no cure, no solution. Life’s for walking through, not for getting around. Let’s do it together.


What Anna taught me this week

Earlier in the week, I attended a celebration at Anna’s school, a school for children with special educational needs. There were music performances and awards given, smiling children and proud parents. Anna sat in the front row and watched it all go on.

I was a bit disappointed, myself. Why doesn’t my child get any awards? Before I could get myself too worked up, though, I realised that Anna doesn’t mind. She can enjoy the success of another without envy. Some people might say this is to do with having an intellectual disability. Maybe so. But I think also that it is a gift. Would that I had it, too.