A few weeks ago I wrote a piece for a website called ‘The Mighty’, a lovely place where people can share real stories of illness and disability. The story was picked up by yahoo parenting and published there as well. The piece was about my journey towards the decision to have a child when I knew there was a chance that child would face the same illnesses I have. The reaction to the story was so viciously negative, so angry, that it shocked me.
Readers suggested I should have been sterilised, they suggested my child’s life will be full of suffering until she dies, they said having a child while being seriously ill is an incredibly selfish act, that my own death was inevitable and the tax-payer would then have to support my daughter. I firmly believe everyone has the right to express their own opinion about most things and wouldn’t want to try and change anyone’s opinion on anything (not that I think I’d be successful even if that was the aim), but I do want to say a couple of things.
I have five systemic immune disorders, one genetic connective tissue defect and countless sequelae from all of the above. I initially thought I’d write a post explaining my conditions and the chances of genetic “transmission” for each one, but actually that’s not where the issue lies. The problem isn’t whether Dot had a 5 or 10 or 20% chance of inheriting any one of my conditions; the issue that arises is whether people who are seriously and oftentimes desperately ill have a right to have children, especially when those children may also be seriously and desperately ill.
The answer, for me at least, is a resounding yes. I say this not because I am blind to the suffering disease can cause or because I have some sort of perverse enjoyment in seeing a child ill. It is because in my core I believe life, joy and love prevail always and that life *is* meaningful even when it is permeated by suffering. No one knows what their life’s trajectory will be, regardless of labels and diagnoses, and the decision to have a child amidst an endless unknown can only be a leap of faith and hope.
I would have been ecstatic to find out Dot was healthy, ecstatic to find out she would never have to see the inside of a hospital, stare down a needle, take countless medications. That did not happen. I am equally ecstatic for Dot exactly as she is, in perpetual awe of her and of how such a tiny human being can grab hold of life in the midst of a thousand adversities and thrive. Do I wish she wasn’t ill? At the beginning, maybe, though I think my only wish was for her to have something manageable. And she does. For better or worse, illness is a part of Dot and that does not make her life miserable or full of suffering or meaningless. Meaning is something we may all struggle to find; elusive as it may be at times what is sure is that it has less to do with external factors and more to do with life, love and empathy.
I am a huge proponent of freedom of speech, but I do struggle to understand people who say those of us who happen to be disabled should be sterilised. As an eternal optimist I can only hope those opinions are in the minority.