The beauty of tonight's sky is such a sharp contrast to the sadness in my soul. How did we get here? When did it happen that the Britain we thought we knew slipped away, subtly shaded by something darker, more sinister and so frighteningly real?
Tonight I made a promise, a promise I was so saddened but not at all shocked to hear asked, a promise I hope very much never to have to keep, but a promise all the same. I had to promise that if anything should happen to one of the most courageous survivors any of us can imagine that I would make sure everyone knew who is responsible.
But, most of us? We already know, and even those who don't are beginning to shuffle with disquiet. We look away, those of us safe enough, secure enough to have enough. We look away so as not to have to face the fear that we are all innately vulnerable and that a need for social security does not make us lesser, or other, but fundamentally human. '
And whilst we all look away, I broke my heart listening to another seriously ill person being broken in the name of welfare reform. And I made the only promise I could - that if it ever comes to it I will make sure everyone knows who's responsible,
Monday, August 19, 2013
Wednesday, August 07, 2013
Last month I went to London to record 'Inside The Ethics Committee' for Radio 4, hosted by Joan Bakewell. It was as ever a vomit themed and fascinating experience - I'm told 'Can I have a vomit bowl just in case please' is one of the more unusual studio requests!
As I've already been asked, I'd like to clarify - I'm not the case study Rosemary and I'm not pregnant! However, Rosemary and I are almost the same age and we both have EDS - this meant I felt a huge sense of responsibility to Rosemary when we were making the programme - I didn't necessarily think the decisions Rosemary was making were always the decisions I would make for myself but I did feel it was vital to defend her right to make those decisions for herself, whatever they might be.
The subject of assisted conception, parenting and disability is obviously complex and sensitive, but I hadn't expected this to be the most challenging media recording I'd ever done...which is entirely my own fault for not thinking things through before I say yes to them! I am glad I said yes without thinking though as it was also one of the most constructive and interesting discussions I've ever participated in - having an all female panel and host definitely helped that. There was simply no-one looking for any kind of conflict but to explore with each other the different issues and potential consequences.
It was also fascinating to consider Rosemary's case from within a social model perspective - I talked to lots of disabled people to get their perspectives before hand, but after much deliberation and many lengthy conversations we all agreed that it simply wasn't possible to fully apply the social model (the theory that disability is caused by an inaccessible world rather than an inherent medical model impairment) to Rosemary's situation because she has some life threatening medical issues that simply won't work within a social model framework.The social model applied in some places very effectively and up to a certain point which always ended in 'but there are no barriers we can remove to ensure her participation without actually killing her' and frankly most of us were unsure that was a terribly social model solution to the situation..
As so many people use this blog as a place to find information about Ehlers Danlos Syndrome I think its really important to point out that for most women with EDS pregnancy does not present the same level of risk as it does to Rosemary due to her iatrogenic* complications.There is lots of helpful information about HMS or EDS and pregnancy on the Hypermobility Syndromes Association website.
I'm really looking forward to hearing the finished debate - that's totally different from participating in it! I hope the intricacies we all considered come across and demonstrate just what a difficult job ethics committees in these situations do...and makes the various ethics committees realise that if they are assessing ethics related to disability in relation to clinical decisions that they should never do so without including disabled people as part of that ethical panel.
When listening please bear in mind that Rosemary is a real person, the discussion is about her real experiences and challenges and please be mindful in any comments that Rosemary herself may read what you are saying.
Inside The Ethics Committee airs Thursday 8th August on BBC Radio 4 at 9am. It'll be repeated and available afterwards on iplayer - I'm not sure how long the transcript versions take but all the older episodes have transcripts available so they will appear. For those outside the UK who wish to listen it might be worth contacting Radio 4 to ask if they have any plans to put the series onto the World Service.
*Interestingly iatrogenic is not a Radio 4 approved word - too difficult. Though to be fair that could well be BBC code for 'you can't pronounce it love so don't say it eh'!