Some of you might know that an inquiry into abortion on the grounds of disability is currently taking place in the UK Houses of Parliament.
I heard about the inquiry through the superb blog Downs Side Up (let’s use DSU from now on), whose author was asked to give formal evidence there. It’s to the UK’s credit, by the way, that they’re conducting this, and with a good deal of transparency too.
It’s such an emotive debate–it’s an issue literally of life and death–but it strikes me that it’s being conducted in a really mature, open, and sensitive way. Zealots in other hot debating topics could learn a lot! The comments underneath DSU’s blog post, for example, are sensitive to people’s right to choose at the same time as understanding and utterly loving their own who have Down Syndrome and other ‘disabilities.’
We understand that it must be extremely daunting to receive the news that your unborn child has a disability, when the option of abortion is there. We can sense, acutely, the trauma of a mother who just, as the DSU blog writes, ‘wants a healthy child.’ But we are passionate and kind in our arguments for life.
In her evidence to the inquiry, Hayley Goleniowska of the DSU blog chose to complement the legal and practical arguments being heard by sharing some of the personal stories she’s experienced over her time as an advocate, to demonstrate the happiness which can come from this ‘disability.’ She says on her blog that her approach is to gently change perceptions.
What would I say, if I were asked to contribute to this debate? Over the years, I’ve known mothers who’ve gone down the path of abortion upon realisation that their child has Down Syndrome. I’ve known poor mothers who’ve suffered tragic miscarriages after having chosen to have a baby with a disability.
I’ve known, also, families whose most effervescent light is their kid with Down Syndrome. Our own family is one of them. We’re a family of driven, complicated, itinerant people–whose isn’t?–and Aine has taught us more about the real grain of life than anyone else.
Aine has a tenacity about her writing that I have never seen in another person (and I’ve known plenty of other writers, ‘able’ in body and mind). And she has a love of love itself which is unparalleled in anyone else I have known. Her capacity to see the good in others overflows.
Like so many others with her ‘disability,’ she has brought more goodwill and happiness to friends and family than anyone in her life’s network, shaming us who have the analytic and motor capacity but not (yet) the soaring, happy heart to go with those blessings.
This is hard to describe to people who’ve not known it first hand, who might think it is whimsy. But in my experience it is real.
This combination of qualities has produced a love of Shakespeare as well as soap operas like ‘Passions,’ adolescent and adult love, boyfriends, flirtations with waiters, Valentines Day cards (to her whole family!), a cleaner bedroom than both her bro and her sis, wonderful meandering stories of magical realism and mystery told over countless dinners, and well over 5,000 pages of poetry over the span of more than two decades of consistent, daily writing.
Could someone else have written the words that Aine has written? No, I don’t think so. Her makeup is unique, and the writing is a result. We hope the book we’re producing, as well as being awesome and bouncy, and multicoloured and cool, can be another little addition to gently changing perceptions.