passing: a reflection for World Down Syndrome Day

Duke of Edinburgh I love the fact that there is a World Down Syndrome Day. The videos produced to promote awareness are encouraging, showing people with Down Syndrome as happy contributors to society. This year’s video, which resists the claim that people with Down Syndrome have ‘special needs’, does this perfectly: what people with Down Syndrome need is the same as what everyone needs–opportunities, education, relationships, etc. girl with DS

True. And yet…I have a daughter with Down Syndrome. Her needs are more complicated than that, and I refer to those needs as ‘special’ without hesitation. Not that she doesn’t need education and opportunities and friends. She needs, and has, all those things. We are extremely fortunate in the level of provision for all of my daughter’s needs here in the UK. But I am worried about the suggestion that people with Down Syndrome are ‘just like everyone else’ for two reasons. (NB: the adorable girl pictured is not my daughter.)

First, people with Down Syndrome can lead lives that are remarkably typical. But this cannot be guaranteed, and it cannot be forced. Like all young children, those with Down Syndrome develop at their own pace and their skills and achievements will vary greatly. To participate in some of the things that typically developing kids do easily, most children with Down Syndrome will need extra support. My daughter has just achieved her Bronze Duke of Edinburgh award. The fact that she had to have certain allowances and modifications doesn’t make me any less proud of her. If she had to compete with typically developing kids, doing exactly the same things, she would not have been able to have this incredible experience. Of course I hope that she will achieve the kind of speaking ability that the young woman who narrates the video has. But she might not. So to be properly ‘aware’ of what Down Syndrome is and means, I have to keep in mind that even if my daughter doesn’t ever speak that well, she deserves to be treated with the same dignity and respect as those people with Down Syndrome who can carry on a conversation with typically developing peers.

young man with DSSecond, and more importantly, my daughter has an incredible gift to give me and all those who take the time to listen to her and go at her pace for a bit. What the video doesn’t help us see is the way that I have to slow down and look at the world differently when I am with my daughter. Every day–when I am paying attention properly, anyway–my daughter reminds me that life is not about rushing from one thing to the next. Life is not about what I can achieve. Being human is not about being utterly self-sufficient and autonomous. All the practical things that I can do, my capacity for self-direction, and my ability to interact with the world in an abstract and reflective way have their place in the way that I live my life. Indeed, these things enable me to care for my daughter and to see her for who she is. But very easily I forget that who I am and what I can do are not coextensive. I am more than a bundle of capacities, more than a cache of memories and ideas. My daughter reminds me that the time I have been given is first and foremost for love. Without that, my capacities would have no direction and my memories and ideas would lack the principle that integrates them. I love. The rest is only really about how I express that love, how I live it out in the world.

Passing, in the novel by Nella Larsen, refers to Clare Kendry’s ability (and that of other characters) to ‘pass’ for white. So doing opens to Clare a life that she could not have otherwise had, but it comes at great cost–and to no good effect. In the context of intellectual disability, there is a certain degree to which ‘passing’ is possible. But doing so doesn’t change the way people with more profound intellectual disabilities are regarded. If being able to play on the level field is the goal, then a lot of people with Down Syndrome and other intellectual disabilities are going to be left on the sidelines. football DS

And we will never see how desperately the rules of that game need changing.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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