I should have been aborted
Abortion is a difficult issue that ruffles feathers. When disability is an extra variable, it incites all sorts of opinions, ranging from the extreme to the ambivalent. Recently here in Australia, a television program called ‘Insight’ held a forum on ‘Designer Babies’ (the link is available at the end of the post) where prenatal genetic testing was discussed. At first, the idea of choosing a baby’s gender was discussed, with the answers mainly involving sexism, political correctness, and gender ratios. The conversation then progressed to talking about prenatal genetic testing for major disabilities such as Down Syndrome, Cystic Fibrosis, etc. My ears pricked up, as I’d previously discussed this issue with my mother, and I was interested to see what the speakers on the programme had to say.
The show had experts in genetics, philosophy and ethics, along with community members who had their stories to tell and opinions to share. The philosophers sat on the fence (no surprises there). The main ethicist Professor Julian Savulescu argued that parents have a ‘moral obligation to create the best humans possible’ and would like to see genetically inherited diseases bred out. The opposing argument came from disability advocate Stella Young, who has Osteogenesis Imperfecta and feels that screening foetuses for genetic disabilities sends the message that the lives of those living with disabilities aren’t worth a lot and are of lesser value.
Both sides presented well structured arguments and good points, but from my personal experience, I couldn’t help but side with Professor Savulescu. It may seem strange that someone with a genetic disability (Limb Girdle Muscular Dystrophy) would side with the position that essentially thinks I should have been aborted and my condition ‘bred out’, but it’s because I was born with it that I agree.
What I have to preface this argument with is that this is solely my opinion, and in no way do I endorse compulsory termination of foetuses with genetic disorders. I’m 100% pro choice and believe that women have to right to do whatever they choose with their bodies and fertility. I’m simply approaching this with the knowledge of what life is like with a debilitating genetic disorder and the conversations I’ve had with my mother regarding her feelings towards my birth and conception.
With a sound mind and acknowledgement of how depressing and shocking it sounds, I believe I should have been aborted. I was my parent’s first born, and they had no idea that they both carried the Muscular Dystrophy recessive gene (making it so that every child they had would have a 25% chance of having the disorder). They then went on to have 3 more children, unaware of the MD genes or even of my diagnosis. In no way do they regret having me, they love me unconditionally regardless of my disability. However, had they’ve known about prenatal testing, and that they were both MD carriers, I wouldn’t have been born. This may upset or anger people, but I completely agree and support this hypothetical decision.
I believe a lot of people have difficulty separating the person who I am now, with the foetus that I was. Obviously, I was born, am alive and am generally a delight to everyone who’s ever met me* (*citation needed). But a foetus is a collection of cells. Sure, that foetus has the potential to form and grow into an amazing human being, but it’s similar to someone feeling upset over eating seeds because the seeds could have been planted and grown into a beautiful tree. Of course human life is very different and more sacred, but the logic still applies. I don’t believe aborting foetuses with genetic disorders is ‘killing’ a person.
As for my reasoning behind this opinion, it’s quite simple; I would never want a child of mine to go through what I have in my life. Without sugar coating it, my MD is quite terrible. It’s the breaking down of my muscles over time, rendering me gradually incapable of day to day activities and actions. I’m actually wasting away. I’m only 21 and I need help with nearly everything. I have no idea what life will be like in 6 months or 10 years. It’s a painful and depressing waiting game. I live life to the best of my capabilities and I’ve been provided with every opportunity under the sun, but it’s a life that I wouldn’t wish upon my worst enemy, let alone a child of mine. Of course having MD has taught me many valuable lessons about life, relationships, self esteem, and ambition, but I don’t feel like these have outweighed the negative aspects that come from MD. You can be as philosophically content as you want, but I find not being able to care for your little sister when she scrapes her knee much more important and heartbreaking.
I’m being honest about this because I feel like disability is often misrepresented as something that’s okay as long as you plaster on a smile. I would rather a potential child of mine not be born, than have to live with the pain, frustration, depression and uncertainty that comes with MD. The foetus has no knowledge of its existence, just as every one of us did before we were born. I do have knowledge of my existence, and while I enjoy my life and am surrounded by joy, family, friends, and opportunity, I wouldn’t put myself through it, if I’d had the choice.
Posted on October 13, 2012, in Uncategorized. Bookmark the permalink. 9 Comments.
I agree. If a women is deciding whether or not to have an abortion, she is taking into account all the information she has, like what sort of life the child will have, how it will affect her life, does she have the wherewithal to support it. Pre-natal testing is a way to get the mother more information. The more information you have, the better you can make a decision.
A disabled person opposed to this might use the argument “So you wish I didn’t exist?” But it’s a loaded question.. behind it is the assumption of an “I”, and, as you say, the “I” doesn’t come about instantly. Basically the same arguments that can be used against any anti-choicer (I use the term anti-choice instead of “pro-life”, because it’s not life, yet) could be used to counter this argument.
There are about 300 million sperm in an ejaculation, so that’s 299,999,999 other sperm that could have combined with your mothers egg instead of yours.. 299,999,999 other potential people. They might have all grown up to be lovely, wonderful people. But if it is not a tragedy that these 299,999,999 potential people are denied development, then it is not a tragedy if the 1 sperm that eventuated in you is denied development.
Allow me a brief reply to your post. My first reaction was one of anger toward you. I mean how dare you not “slap a smile on your face” and carry on ! I represent the majority of those who through war,illness tragic accident find them themselves less physically and emotionally “able” than before.I was fortunate to have 18 good years before an RPG tore through my body and changed everything-mostly for the worse. My life is hard and getting harder as I age. Sometimes I want to just quit but failing the courage to off myself I just keep on. If, pre-consciously you are seeking pity then you have mine. In my opinion a little self pity is well deserved on occassion
Whatever future you envision for AI one thing is not in dispute, and that is that computers will be able to crunch more and more data faster and faster. Eventually, we will be able to test embryos and run their genetic program in an accelerated virtual environment, giving us the ability to see the results in real time. And as our understanding of the human genome becomes more advanced, we will have the ability to also improve on nature. Now the reason I’m bringing this up is if we can design beings that are superior in every way to Homo sapiens, would it still then be, given this paradigm shift, ethical to bring an inferior, plain old human, with all its evolutionary baggage, into the world?
Your brutal honesty is confronting. I don’t see you, in any shape or form, wanting pity. You are just stating facts. It breaks my heart to wholeheartedly agree with you, but that doesn’t mean you are any less loved and cherished.
Great piece, I fully agree with what you wrote and thank you for writing it.
Abortions not that scary, life is not sacred and I would welcome this honesty
Completely agree with your point of view.
I think the sentence that really nails it is: “I believe a lot of people have difficulty separating the person who I am now with the foetus that I was”. ABSOLUTELY!!!
(PS sorry for being such a fan girl.)
I’m glad you’re alive and weren’t aborted. You were a person then, and you’re one now. Glad you made it, and I wish you all the best in life.
This is such an ambiguous issue. The question of abortion and genetic disorders is too close for comfort for me because my cousins’ side of the family has to deal with Huntington’s disease. Because I have a birth defect, when I was younger I sometimes wished that I HAD been aborted. All I can say is that I’m hopeful one day gene therapy will render this debate obsolete.
Last but not least, I’ve started a blog of my own. I intend to post about meditation, disabilities and PSYCHOLOGY, so I hope you won’t mind pointing it out if I make any errors.
Tough blog post… It’s hard to know what to say in reply other than that I really appreciate your candor and wish you all the best for the future. There’s some great research being done in this field, I hope it comes to fruition to assist you as someone so intelligent deserves far better.
Neither of these articles relates directly to MD, but I thought they might be of interest to you as they both speak of the kind of advances that could one day lead to a breakthrough in treating MD.