*** An edit ***
So I have spent the last 4-5 hours being absolutely battered for this article on twitter. Interestingly facebook seemed to agree with me, but twitter… yeah… twitter wasn’t happy. It started with one or two comments and I was still pretty firm on my position. I really think (thought) altering genes to stop someone being disabled sounded like a really good idea – they wouldn’t suffer right? But then… are they suffering? Are they? Here’s the crux. I don’t know, I don’t have a clue – in fact, this whole post is written in the hypothetical. I’m thinking as a mother, wanting to make sure that my babies are never treated badly by society, never suffer… but then someone (quite rightly) pointed out… what if they are gay? What is they had a different skin tone? Do I want to alter their DNA then? Should I make Edie a bloke while I’m at it because I want to make sure she has a fair shot? All of those ideas are pretty daft right? Yup. So why is removing the DNA from someone to stop them having a disability any different? Shouldn’t we first tackle society – the CAUSE of the problem, and not tackle disability itself?
I still feel that if I could remove genes from a child to prevent them having something that would cause them a lot of pain or kill them young, I would – be it an illness or a disability, two very different things. If I could remove the genes for cancer. If I could remove the genes for parkinsons. As for the rest of it, a disability per se… perhaps I’ve written this without REALLY seeing the bigger picture. I’ve written it after talking to many parents of disabled children… but not disabled people (though I have heard them LOUD and clear on twitter and they have made me completely re think whether or not my stand on this issue is even close to being reasonable).
I’m not one to delete and pretend I haven’t said something out of turn, offensive or wrong – so I leave the post here, but with an edit to apologise for not really thinking hard enough about this topic. This was written from a place of love – from a hope that no one would suffer, but perhaps people only suffer because of society and we confuse our suffering with theirs. I’m genuinely sorry to the people I have offended with this post – the last thing I would ever want to come across as is a bigot… and I think in some ways, I did here.
I missed the buck somewhere on this and I’ve come to the conclusion that, perhaps in a misguided attempt to make what I envision as a more equal world, I’ve done the opposite. All I really want is to have the option to remove suffering and pain – but I fear this post has actually cause that and it’s never my intention. In short, I’m leaving this here, not because I stand by my words – I think I greatly misjudged my words on this one, but because I think it’s MASSIVELY important to acknowledge when we are ignorant on a topic and how we can learn from LISTENING to each other.
Thank you to those who took the time to make me think about this topic from another perspective (the only one that matters really – the one of the person I’m assuming is suffering) and for not being as abusive as some chose to be. To be really firm this is in absolutely no way a post promoting eugenics – not even slightly. This was written with suffering in mind, but as it’s been pointed out to me, I’m naively assuming suffering and disabilities go hand in hand and not all do.
Earlier this week a blogger friend Charlie from Our Altered Life tagged me in a poll on twitter about DNA engineering. I am notoriously shite at twitter so I didn’t see it for a few hours but once I came across it, I was quite intrigued. The poll said:
RT! Removing the individual genes from embryos which can cause disabilities or illness later in life… #GeneEditing
— Charlie Beswick (@ouralteredlife) August 3, 2017
and so of course I voted “Yes! Avoid the trauma”… and then up popped the results to show that people were really split on the topic.
I have to confess, and I said this at the time, the whole “don’t play god” thing really baffles me. Hear me out right. If you have a child who is born with a degenerative disease, are you telling me you wouldn’t want to prevent that? Hands up, how many SANE (not brain washed) people would refuse a blood transfusion? Refuse medication? Refuse a cure for their loved one’s life threatening disease?
Not many. So why are we afraid to play god BEFORE the suffering occurs.
Another friend Katy from What Katy Said pointed out that not all disabilities have the same effect on one’s life. Not all are life threatening, and at what point to we stop interfering. Again, if you were offered a “cure” for your deafness or even help in the form of a hearing aid, who would refuse this? Corneal treatment? Speech therapy?
See where do you draw the line though. Some disabilities aren't as life limiting as others and make the human race what it is. x
— Katy (@WhatKatySaidUK) August 3, 2017
In my mind, and of course I’m only speaking from my point of view, from what I can see there will be many who disagree, I would love to see the option to remove any genes that cause disability.
From disabilities that people live with every day that have low impact on their lives to disabilities that cause life threatening complications, surely we should jump at the chance to make sure that no one has to suffer? If we could remove the genes from an embryo, before that embryo becomes a person, and we could make it so that there was less chance of a child being born with a disability then that is a good thing to me. To not jump at the chance baffles me. I think perhaps we lost sight of what a disability is when we were so busy tying to protect the rights for those who have a disability and to build up equal rights (something I’m very supportive of by the way). The very word hold a negative sway. “To be disabled: having a mental or physical condition that LIMITS their movements, senses or abilities.” Why would we want anyone to be limited if we could prevent it? We spend our lives teaching our children to break the mould, go beyond our limits and then, when offered the chance to help those who are already classed as “limited”, we cry “playing god?”
Let’s not jump on the “playing god” bandwagon too quickly, when we already do it in so many ways.
Another Twitter user said “should we interfere with nature?”… would you look the parent of a child with a serious genetic disability, one that will likely claim their life far too soon, in the eye and tell them “well, it’s just natural selection love, sorry for your struggles but, you know, it’s just the way it is”? Of course not. Only if you really are a special kind of cruel. To ask if we should interfere with nature IS akin to offering up the natural selection bollocks on a shiny platter and painting your face with whatever benign look you can. It’s rubbish! Yes, of course we should interfere with nature, if it can help someone. YES! We do it daily.
My dear friend Laura from Life with Baby Kicks mentioned that there wasn’t much policing of DNA repair and that she’d already seen it done… but on the flip side she had seen and indeed been offered by her OBGYN a “designer baby” to ensure she got a girl next time round. Her point was that “where do we stop?” If there is so little policing already and it becomes common to generically modify DNA for the prevention of disabilities, then why not for gender? Why not for hair colour? Eye colour? Skin tone? I’m still not sure where I stand on this issue other than my fear that we will eventually eradicate one gender and find ourselves in some terrifying Handmaiden’s tale. I think that better policing is a must but in reality, we could do one type of DNA modification without the other. We could modify DNA for good, for kindness and not for vanity.
Another person mentioned that in our aim to prevent disease and disability we may well end up creating more. This is a point that made me stop and really nod my head. This is a real possibility and one that I think would need to be explored – of course, how you explore it when testing on humans is illegal and morally reprehensible is beyond me. It is a very worrying prospect. Another area that I did think was concerning and was pointed out to me when discussing it with my gorgeous friend Hannah from Hi Baby Blog was that, if this becomes something that you can PAY for, does that mean that those who are already treated as second class by society (and let’s not pretend our society isn’t SHIT with equal rights for disabled people) then will people who can’t afford to pay for this for their potential children be at a further disadvantage and those born with disabilities become even less catered to, even less respected and cared for? Will their rights be diminished further? That really is worrying – and it is a reason that I would see something like this available for high risk patients on the NHS.
I just think, and I’m speculating here, if I had a child with a disability, I would want the chance to change that for them. To take away disability from their lives, and I think most people would too when faced with it on their doorstep.
It’s a thought provoking one and one that has a lot of people impassioned. The last thing I would want to come out of this post is that I have something against disability or disabled people – far from it. I simply believe that the very term “disabled” is indicative of why we should indeed play god on this one, because “limits” shouldn’t be the starting post for anyone.