I recently sat down to watch an episode of SBS's
Insight where they discussed the use of genetic testing to detect inherited disability and diseases. I believe this issue needs examining through a framework broader than one's personal experience of disability. Genetic testing is something that affects the future of society as a whole, not just my experience of it, so I told myself it was my responsibility to keep an open mind.
The debate focused on whether stopping the birth of children with various disorders enhances humanity. Most people's opinions fell into two categories. Those in favour of genetic testing believe it will stop the potential suffering of affected children, and one ethicist even argued it was necessary to ensure the survival of humanity as a whole. Those against genetic testing largely believed that even though life with a disability might involve suffering, it can still be rewarding and is therefore worthwhile.
I can understand why those in favour of stopping the birth of such children want to prevent suffering. After I heard this a few times though I thought of my favourite line from the movie The Princess Bride,
Life is pain, Highness. Anyone who says differently is selling something. That is to say, while it is true that individuals with a disability may endure more suffering than most, life always involves suffering of some kind anyway.
I believe the desire to prevent suffering in this way is driven by good intentions. Nevertheless, to me it seems these good intentions are driven by fear of the unknown. Many people do not realise a large part of the suffering endured by people with a disability is not only because of their condition, but because of things like negative social attitudes and lack of proper care.
I found a speech elsewhere on the internet by the ethicist who said genetic testing was necessary for the survival of humanity. Without a trace of irony he quoted Stephen Hawking at one point to support his argument. Disabled or not, I would not want to live in his supposedly genetically perfect
Brave New World because history has shown that trying to engineer an
ideal society often creates suffering for everyone, not just those targeted.
There will never be an easy answer to preventing the suffering of individuals with a disability, and the suffering of some is indeed intolerable. However I would like to see more people thinking first about how to positively change the lives of people with a disability, rather than trying to prevent them from being born at all.