Wednesday, August 07, 2013

Rosemary's Baby? Inside The Ethics Committee, Radio 4 8/8/2013 9am #eds


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'!

5 comments:

Nick Woodall said...

Dear BSS. What everyone on the programme completely failed to address was the astonishing irony of a woman who was outraged (as I believe you were) that anyone had the audacity to question her ability to care for a child but casually announced that, in the event of her death, she would hand the baby over to one of two families rather than the child's father on the grounds that he couldn't look after it. Best wishes, Nick.

Iba said...

Ah, my favourite blogger on my favourite radio programme! And what an amazing story Rosemary had!

I was particularly interested by what you had to say on risk - I think you said that a disabled person's understanding of risk was different from a clinician's. I hadn't thought of that.

Anonymous said...

I have just listened to the programme on Iplayer and I found it really emotional to listen to. I have EDS too and me and my boyfriend are hoping to have children. My Mum (who has never officially been diagnosed with EDS but obviously has it) nearly died having my sister. I could really relate to Rosemary but I don’t think I would be prepared to go through what she went through to have a child. I have never heard of someone with EDS who has such severe problems. I must admit that I was shocked that she had to be tube fed and the infection risks associated with this. The programme dealt with her case very sensitively and did not sensationalise it. I feel that you made explained what it is like to live with EDS really well and that must have helped listeners understand Rosemary’s decisions.
After reading all of the comments on the programme’s website I was shocked that so many people thought she was selfish and that her child would have a horrible life. The programme did not really explain that even if you have the gene for EDS you could be unaffected and that many people who are affected do not even know they have the condition. I am sure that if Rosemary’s daughter has inherited EDS the fact that she will have the right care from an early age will mean that she will not end up with as many complications as her mother. If people are going to worry about children with EDS the children they should focus on are those who clearly have some problems but who have not been diagnosed yet .
I have loved your blog for a long time but hearing you on this programme made feel that I must tell you how much it means to me that you write about what it is like to have EDS.

Anonymous said...

Not one word was breathed about how much Rosemary costs society for her care before and after pregnancy, plus ongoing child care. It sounds doubtful that she will ever be in a position to put anything back into society. Sadly, it is not an ideal world where everything is handed out freely - someone has to work, often in mind numbing and back breaking circumstances in order to pay taxes so that handouts can be given.

Anonymous said...

I came across that radio programme and upon reading it was discussing EDS decided I would listen, as a young women in my 20s I have been battling with maternal instincts which I do not intend to act upon regardless of the fact Doctors have decided to add there two pennies in and inform me that having children isn't such a good idea.

Rosemary's choices are exactly that her own and the majority of women may feel the evolutionary need to procreate to continue the human race, however when a vessel which is exactly what pregnant women are is incomplete or damaged there are reasons why we as women are not able to conceive naturally, and I do not believe that modern medicine abiliy to overrule such decisions made by the human body is always such a good thing.

I think you depicted a very clear picture of how differential EDS can be and the sudden down turns which can occur which scare others more then they do us, I find for myself it is more about acceptance. A element of your perspective which really effected me was about the psychological affect of not being believed for years and years (I was diagnosed nearly six years ago at GOSH) however, two months ago I ended up a inpatient in Basildon Hospital and ultimately there lack of foresight and attention to my complex needs results in my needing a wheelchair and walks frame, it two over two months to explain and be understood that a person with EDS (in my case) will struggle to push a self propelling wheelchair which led to me being housebound for 6 weeks.

You certainly have my attention, I will continue to keep tabs on your blog.

Take Care, H x