14 December 2009
Writer and actressAppeared in BioNews 538
Earlier this year, I approached the four hospitals offering fertility treatment within a 40 mile radius of where I live, explaining my family history. Three of them rejected me immediately. The fourth hospital invited me to attend an appointment with a counsellor, who recommended I be accepted. I was given another appointment to have the necessary extensive blood tests; the results were all fine. At a third appointment, I met a doctor who told me she had a couple in mind to match me with. Shortly after this, I received an email telling me the hospital had now decided they could no longer use my eggs.
There was one reason for all these rejections: my eleven-year-old daughter has Asperger syndrome (AS). She experiences difficulties with communication, social interaction and coordination. In addition, she suffers from panic attacks and her anxiety is at times debilitating. She's also a warm-hearted, thoughtful person and a gifted mathematician; in fact, she achieves above age expectancy in every academic area. Her sense of humour and understanding of language are developing apace; when I told her I'd been rejected as an egg donor, she asked me with a wry smile if that meant she was a bad egg. Only one other relation has an autism diagnosis, a young adult with AS in my extended family who is studying for a degree and holding down a job.
My experience has prompted me to think about this issue in many ways. A starting point is that it's ironic that inclusion and acceptance of people with disabilities has reached the point where there is legislation to protect their rights, while simultaneously doctors are trying to prevent them from being born. Disabled people are, in many cases, capable of great achievements. Should we be using perceived disability to tip the balance against them in fertility treatment? It is human nature to play to our strengths. This is not just something that high-achieving disabled people do, it is something we all do. Recently someone said to me, 'Is there no end to your talents?' I thought, now there's a person who hasn't heard me sing. Like everyone, I have many failings; I choose not to showcase them. Possible disadvantages cannot be weighed against potential talents when contemplating the impact of disability in this abstract way.
While it could be said that prospective recipients of donor eggs would be unlikely to accept them from someone with AS in their family history, I don't think this justifies not offering the choice. This was perhaps the aspect of my experience that caused me the most frustration and sadness. It would be unthinkable for a doctor to tell me that I was not allowed to conceive naturally due to my family history of AS, so why is it acceptable for doctors to make this decision on behalf of those who need assistance conceiving? There is an acute shortage of altruistic egg donors; in rejecting me the message is that it is better to be childless than to have a child with AS. I would disagree most ardently with this premise.
The fact that scientific progress has led to this situation means that an ethical and philosophical debate is necessary. Do we really know what's best? In millions of years of evolution, AS has not been eradicated. While some might say there are greater numbers of people now with AS than ever before because of improved understanding and diagnosis - a theory that I would not necessarily dispute - it could also be said that we have evolved as a species to have an increasing number of people with AS. In other words, people with AS have been naturally selected, so maybe we need them in our species in a way we are yet to fully comprehend.
The concept of neurodiversity asserts that atypical ways of thinking are simply at a different point on the same scale as the majority of people. This implies that AS is an extreme version of normal. When my daughter struggles, she does so considerably, however when she flies, she soars. I wonder if it is either possible or desirable to breed out these extreme states from our species.
The bottom line is that both human beings and AS are too complex for this to be a straightforward choice between whether it is better for a person to be born who has AS or another person to be born who hasn't.