[TW: death of a young child with a disability]
Anna’s records of the dead are a large part of the reason I have been taking notice of this story about the death of Maia Comas in December 2007.
According to the SMH, Maia’s parents had spoken about the idea of euthanasia for Maia, who was two years old, because she had been diagnosed with Rett syndrome. A few months later, Maia was found dead in a blow-up pool at her home.
The coroner “has been unable to determine whether or not [Maia’s] death was accidental” but has indicated that Maia’s parents were greatly irresponsible.
This is not the end of the road – such a decision does not absolve Maia’s parents of all legal responsibility. The legal consequences of the finding essentially leave the door open to police to investigate further (or simply rely on the investigation already carried out) and to potentially bring charges (including for murder, should they think it appropriate – that is, from the information I can find, the coroner’s finding does not rule out such a charge). Which is not to say any charges will be brought – I have absolutely no idea.
But that is all a preliminary to the reason I’m writing this post.
From what the various articles I’ve read have suggested, the parents asked about euthanasia either because they couldn’t imagine how Maia could lead a fulfilling life, or because they could not imagine how they themselves could cope with caring for Maia, or both.
I doubt any such inability to imagine those scenarios was due to the parents’ lack of imagination. I suspect that it was due more to the inadequacies of the system – a system in which we often neglect to remember that people with disabilities are, first and foremost, people; a system which fails to support people with disabilities and their carers.
The real tragedy in this story is, yes, Maia’s death, and that’s why I’ve written this post. But that tragedy highlights broader social issues – a broader social tragedy. And I think that’s worth thinking about.
ETA: Today in the Guardian, there is a story from the UK about the mother of a young girl with disabilities, who has been refused respite assistance. As a result, she has asked for her daughter to be taken into care. I think these two stories highlight the same sorts of social issues.
Categories: social justice
Thanks for posting on this. I have been too horrified to read much about it. Just awful, awful.
That’s how I had been feeling, too. I figured having the coroner’s decision was a good catalyst for me to write the part
That should be “post”, of course.
I think the answer may be ‘both’. From what I have read the investigating officer didn’t think it was deliberate on the mother’s part, but that doesn’t mean that there wasn’t negligence involved. [father of child was at work]
I would have hoped that rather than being horrified at their questions about euthanasia the Dr would have immediately referred them to counselling and support services but I don’t know that that happened either.
Apologies, I just realised that the second part of my comment sounded horribly ableist. What I meant to say was that I don’t know if the parents were referred to services that could have helped them understand Rett’s Syndrome and get their heads around the fact that their daughter could still live a happy and fulfilling life. If they weren’t they should have been.
Yes, I agree (I also don’t know if it happened).
Also, I’m going to update the post with a link to a story in the UK about the mother of a young girl with disabilities, who has been refused respite assistance. As a result, she has asked for her daughter to be taken into care.
I ‘know’ Riven – the website she frequents, Mumsnet, is one on which I’m also a regular – and she’s just so lovely. A year ago she called Social Services and asked the same thing; she couldn’t cope, she needed respite, she wanted them to take her daughter into care if they couldn’t provide further services. They said no then, they’ve said no ever since. That was before the Cameron visit. She uses whatever last vestiges of energy she has to campaign, and it just doesn’t get any better. As she says, frequently – it’s so much cheaper for them to just condemn her, and her daughter, to this half-life than to help.