Normally the most I venture into Radio is listening to Chris Moyles for an hour on a weekday morning. My parents however are avid Radio 4 listeners with speakers in the lounge, front room and dining room all hooked up to the stereo. Whenever I’m home I can’t help noticing the radio, but am also very practised in tuning out, especially when I hear the first bars of The Archers theme tune.

So it surprised me this evening when I found myself, in my tuned out state, tuning back in. I have been listening with interest to ‘Inside the Ethics Committee’. It’s actually quite understandable that this got my attention. I went to a Catholic high school and for me the redeeming feature of Religious Education lessons were discussions and debates about ethics and morality. I enjoy this kind of thing.

The discussion this evening was about Ayesha, who has a genetic condition that means she requires support to carry out day-to-day tasks, but wishes to have fertility treatment (read more at the Radio 4 website). In my opinion I don’t see a problem, her husband is capable of caring for the child, and a 50% chance of inheriting a disability is not a good reason to refuse the treatment.

I put myself in her shoes. I would be livid if I needed fertility treatment and I was refused it on the grounds of my “disability”. I really don’t like calling it that. I think everyone has a potential disability. Don’t we all have strengths and weaknesses, both physical and mental? It’s just that society has come to use this word to define a weakness that requires ongoing support and/or care.

Let’s face it, anyone, at any time, could find themselves in a position where they were unable to physically care for an offspring. Ayesha has a husband who is physically able to look after the child, and both of them are fully capable of loving a child. That is more than some children ever have.

The other issue is about the chance of that child inheriting a disability. I think it is fair that with certain disabilities the parents get to screen and make a decision (though what those disabilities should be is a whole other blog or PhD). However I believe that that decision is always based on the parents feeling and judgement about their ability to cope with caring for that disability, not on the quality of life that child will have. Having worked with children with severe and multiple disabilities I have found them to be some of the happiest children I have known. I don’t see their disability as a “burden”. Rather they may not experience the “burdens” that other children do because they are simply unaware of certain pressures and stresses of society. I believe ‘quality of life’ is a very personal and subjective notion and no human can assess the quality of another human’s life. How each human being reacts and rises to the challenges they face is based on nature and nurture, it’s what makes us individual.

I decided to blog about this because of the personal battle I have had with deciding whether I might want children one day. I initially didn’t want children, and not just because in my early twenties the broodiness hadn’t kicked in. I wasn’t sure what right I had to make the decision to have a child that would almost certainly experience depression (from looking my at family history). But over the years that opinion has changed. Just because of what I experience doesn’t mean I wish I had never been born (even if I have wailed that sentiment in the depths of depression). And I don’t have the right to make that decision about any potential future off springs of mine. Who knows, they might even buck the trend and never experience anything more than bad PMT (our family also seems to only give birth to women, we then marry the men in, and start all over again!)

I was really pleased that the Ethics Committee allowed Ayesha to go ahead with fertility treatment. It is another positive step forward in recognising and treating people as individuals, not labelling them and sticking them in a box with everyone else.

I know that this is a deeper subject than cannot possibly be fully expressed or properly debated in under 1000 words, but it is a taster on my thoughts around the subject. I do appreciate that others will have different opinions to me, and very personal experiences that have shaped their views. As with anything I write, I hope it is taken in the context it is intended, and it is understood that whilst I might not always agree with the views of other people, I do sincerely respect them.

The photo is of ‘Alison Lapper Pregnant’ by Marc Quinn on a plinth in Trafalgar Square (taken by me in 2007).

footnote: Interestingly this is the first blog I have ever tagged with the word ‘disability’.