DNA engineering to prevent disabilities :: Why I think we SHOULD play GOD

*** 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:

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?

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.

46 Comments

  1. August 9, 2017 / 1:27 pm

    Harriet, I really don’t understand this backlash. Your words clearly came straight from the heart and as another mother I feel exactly the same. If I could nullify any risk of a physical or mental disability from a foetus of mine, I would. Short & simple. That doesn’t make me a bigot, surely? Well done for your edit though, only strong women like you are able to stand up and be counted when words might be misconstrued x

    • Harriet August 9, 2017 / 9:40 pm

      Thank you lovely, I really wish it hadn’t upset people so much 🙁 x

    • Zoey
      August 15, 2017 / 12:21 am

      A lot of backlash was from the mental and physical disabilities Amanda. We don’t want to be cured or prevented from being born. Most of us love who we are. We’ve got our own cultures, and many of us enjoy the freedom of being different. I do, and I have Asperger’s Syndrome, Sensory Processing Disorder, and GAD (Generalized Anxiety Disorder), and likely ADHD and OCD. As for you Harriet, I’m glad that you were thinking of more utopian-type world. You are a strong person for standing up and admitting, while the way it was said and implemented was not correct, that your intention was not malice. I have a lot of respect for you as a person, and I hope your life goes well for you.

  2. August 8, 2017 / 3:41 pm

    I understand most if what people have written here, in many cases they’ve had lifelong relationships with the less abled person in question so of course they love them is part of them, its what makes them…them! I have a son with autism and a daughter with type 1 diabetes and coeliac disease. Would I change my son….not for a second, he’s the most gorgeous boy, loving, funny (I mean REALLY funny) and to look at the world through his eyes is a blessing. My daughter? Would I take the diabetes and coeliac disease away from her HELL YES! In the bloody blink of an eye.

    • Harriet August 8, 2017 / 4:13 pm

      Thanks Rebecca, I seem to have really have been taken out of turn. Blummin blog posts going around about how I’m propagating eugenics. It’s really sad – I would never mean to do that and I only hope I’ve managed to convey that in my responses and edit. Our differences are beautiful, I purely meant that, in the case of someone being in pain, unable to live etc, surely a PARENT would want to take that gene away… of course I didn’t think on whether that PERSON would and that is where I have made a huge error.

    • August 8, 2017 / 5:51 pm

      The terms you’re looking for here are “ego-syntonic” and “ego-dystonic.” I.e., whether a condition is conceived of by the person who has it as intrinsically part of who they are, as aligning with their own sense of themselves. People who have neurodevelopmental disabilities, disabilities they were born with, or disabilities they acquired very early in life, tend to experience them as ego-syntonic. They’re part of our whole experience of ourselves in the world.

      People who acquired disabilities later in life, or people with chronic illnesses that carry a lot of pain, inconvenience, expense, and risk of premature death but are not experienced as necessary to who they are as a person, are understandably more likely to experience them as ego-dystonic.

      I don’t know how your son and daughter themselves experience their disabilities.

      Lots of people with disabilities and chronic illnesses I haven’t experienced desire a cure for them, or at least the availability of much better therapies. I respect their wishes; I’m not living their lives. I think all people deserve to be able to seek care or treatment to improve their comfort and quality of life. Many disabled people who DON’T want a cure nonetheless DO want there to be better therapies and treatments available for certain aspects of our disabilities.

      Disability isn’t all one thing; disabled people should have the right to make these individual determinations about our own lives.

  3. August 8, 2017 / 12:19 pm

    Just had to ping in and say I really respect your ability to swing back on this and re-examine your initial stance after seeing a different side of the conversation. As parents, I think our role isn’t to hope our children never face adversity, but to find a way to equip them to be agents of positive change in this world that embrace differences and see that these unique qualities are truly what makes the world a beautiful and inspiring place. Keep on keeping on, and thanks again for adding that intro to show evolution on your thought – many would become more resolute in their stance vs. finding merit in others views.

    • Harriet August 8, 2017 / 12:35 pm

      Thanks Mary – I am always willing to admit where I think I have been wrong and I think it’s important to try and see everything from another person’s pov, even if ultimately you don’t agree. In this instance, I feel that I’ve been thoroughly enlightened and I had no idea that what I perceived as a musing post, considering pros and cons of a news topic, would be taken SO differently to how I intended it. I’m mortified that it caused hurt and offense – that is NEVER my intention in any aspect. H x

  4. August 8, 2017 / 11:21 am

    Wow people can be so mean! I have only just read your post and I totally get what you meant, although so many people seem to just look for emotive posts just to be horrible. My friend had a wonderful son who was born with downs syndrome, the most amazing, funny, cheeky boy you could ever meet, and she definitely wouldn’t change that about him, however he got diagnosed with leukaemia and spent a very long time in hospital, but he was a fighter and got the all clear, then it came back and unfortunately he wasn’t so lucky the second time around, so if you ask her I am sure she would totally agree with your post, not about changing downs syndrome, but eradicating the disease that took him from her. At least that is what I was reading from your post , not that you think every single person with a disability should be eradicated….

    • Harriet August 8, 2017 / 12:13 pm

      Thank you – that was the intention, of course not that every disability should be prevented, a lot of disabled people are disabled for reasons that have nothing to do with genetics. It was a musing post, not something to propagate eugenics or anything else. Hx

  5. August 8, 2017 / 9:01 am

    This is an important issue to me… and I could see he benefits of preventing certain conditions especially those which cause pain and suffering. However I do have a special needs brother with chromosome deletions and would not change him for the world. James has taught my family patience and understanding. He has given us joy and happiness and It’s wonderful to have a brother who will forever be a child and enjoy christmas and birthdays like a little kid even though he is a grown man. Having said that I would never ever wish my illness “adrenal insufficiency” on any child or adult and if here could be a way to prevent this I would 100% back it. I think our trials and difficulties especially those caused by disability is a blessing in disguise at times and as hard as it is, it teaches us and makes us better people. I think it’s great that you added to your initial post and it is good for thought. The most importance thing to me is acceptance and support, that’s what I think is lacking in society. There is not enough support for those who are disabled. Well not for everyone with disabilities anyway. Thanks for writing this post and bringing the issue to social media. It is something That needs more awareness.

    • Harriet August 8, 2017 / 12:14 pm

      Thanks Angela – I hope at least opening such a can of worms has allowed others to get better educated on the topic like I feel I have.

  6. August 8, 2017 / 7:42 am

    Here’s a basic question to consider when you go to write about a very large group of people, such as the disabled…

    “How much do I really know about what group xyz thinks about the issues I plan to write about?”

    An issue that affects millions of people is not something you should write about just straight off the top of your head. You have to TALK to the people affected. At the very least you should research what that group has to say. It’s especially mind boggling to me that you aren’t–or weren’t–aware of the Disability Rights Movement, especially since ADAPT protesters — majority in wheelchairs–fought ferociously to save Medicaid and the ACA, putting their bodies on the line. Many were arrested and treated like sh-t. Wheelchairs deliberately overturned by cops. Cops laughing while the people flailed around on the floor unable to get up. And our so-called president…don’t even get me started.

    You can’t blame that on lack of media attention, because those images were all over the news.

    FYI my mom wanted my sister to have an abortion when she became pregnant by the black man she eventually married. Our mom claimed her concern was about all the trouble they’d have to face because of racism. Does that sound familiar to you? I mean, why would anyone CHOOSE to put themselves in situations that would be so difficult and so painful?

    Here are some of the really outstanding disability activists you should be following:

    10 Badass Disabled Women You Should Know About
    https://www.autostraddle.com/10-badass-disabled-women-you-should-know-about-346192/

    See also;
    Lydia Brown
    Anita Cameron

    National ADAPT
    @NationalADAPT
    ADAPT is a national grassroots disability rights organization fighting to end the institutional bias.
    https://twitter.com/NationalADAPT?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5Eauthor

    Those are just for starters.

    • Harriet August 8, 2017 / 8:29 am

      Thank you for your comment Geor – you’re right, I should have thought about the issue more. In case you didn’t see where the original post was prompted from, it was from a poll taken by a mum with a disabled child and in a rather ignorant way I just thought “Oh, interesting topic, I wonder what others would think.” I never for a second wanted to promote eugenics, never intended to suggest that anyone’s life wasn’t worth living and I know that people are really divided on whether I have done that or not.

      Thank you for those links.

  7. August 8, 2017 / 7:36 am

    Me and my husband are both disabled, our 2 children are fortunately not.

    We’ve often talked about whether or not we would take our disabilities away. The answer is, we honestly don’t know, there is a lot to think about there, would it change us?
    However, we both agree that if we could take a disability away from our baby, before it is born, so it never has to feel pain, suffering, struggle harder to do things others can do easy or even get left out, then of course we would. As long as it was before our baby was born, so we won’t know if he/she is any different, then yes we would take away the pain.

    • Harriet August 8, 2017 / 8:31 am

      Thanks Jade, this is exactly the kind of question I was trying to raise, and as someone who is disabled I really appreciate you taking the time to see what I was asking, not that I was trying to promote eugenics or “eradicate” disabled people as I’ve been accused.

      • August 8, 2017 / 6:50 pm

        So, here’s the thing…

        I really appreciate that you’re taking the time to listen and try to understand where you went wrong. That’s more than a whole lot of people do when confronted with their prejudices.

        You keep saying that you never meant to promote eugenics or anything like that.

        But what you originally wrote–that is literally what eugenics is. That we should attempt to eliminate certain traits from the human gene pool. I understand that “disabled people just shouldn’t be born” might not have been what you meant to say, and I think that’s not necessarily your fault as much as it speaks to just how badly informed most people are about the history of eugenics.

        But that’s eugenics.

        And it has almost always been undertaken with the aim (or the excuse) of preventing suffering.

  8. August 8, 2017 / 12:53 am

    I read your article an hour or two ago (and a lot of the tweets sent in response to it) then have gone to do something else offline but it’s been nagging away at me so I had to come online to read your piece again and leave a comment.
    Firstly can I just say that any blog post represents the writers own views, you don’t attempt to speak for the masses nor are you condemning those that disagree. It’s just you, giving your opinion on a matter. A slightly sensitive matter, I’ll give you, but it is your opinion. Therefore I cannot understand why so many people have felt it necessary to be so critical. Yes others have a right to disagree with it, and they can crack on explaining why they disagree but they don’t have the right to respond by calling you names or making mass judgements on you as a person. I don’t understand that. Certainly when I write a blog post, I write it from me. If I considered every opposing view to mine I would never get anything written (and even if I did it would make for a boring read). We don’t represent anyone but ourselves in what we write and therefore we have the freedom to share our opinion on any issue we like and nobody should be shamed for doing so.
    Secondly, as a person registered as disabled, I want to reassure you that nothing you said in your article was offensive to me. Since becoming ill with a chronic disease in my early 20s I have suffered chronic pain and fatigue on a daily basis and take high dosages of morphine just to get by each day. If I had the choice to relieve myself of that pain and suffering then hell yeah I would. In a heart beat. I would never knowingly subject anyone to the pain or suffering I experience if there was a way otherwise. And here’s the thing, I’ve been offended by some of the comments/responses to your article tonight because many have spoken as if the disability defines them. I.e. Take away the disability and the person is not the same. I don’t buy that at all. Take away my disability and the only thing that would change would be my happiness. I would be over the moon to have escaped the daily pain I find myself in. But it wouldn’t change me as a person. As a human being. And as for the ‘you are suggesting disabled people should be killed’ argument, I don’t even want to grace it with an acknowledgement as it is so ludicrous. That isn’t what you said. Your post was centred around removing the potential for disability prior to the cells becoming viable. This should not translate into this image of you wanting to rid the world of all disabled people. That’s not the same thing. I’m disabled and would do anything to avoid my children from living a life in pain and suffering. I can’t understand anyone who would choose otherwise. Removing the potential for disability does not remove the ‘person’ because nobody should be defined by their disability. I’m the same person I was before I was diagnosed. The only thing that differs is that my life is now very limited by my disability. I understand why you edited the post but I actually don’t think it warranted an apology. There was nothing wrong with what you wrote because you were representing YOUR views and nobody else’s. Even if I disagreed with you, I would think the same. Anyhoo, I’ll get down off my soap box now. Just wanted to reach out to say I’m standing with you on this! Try and ignore the horrible comments. Everyone has a right to an opinion but not if they shame others for having their own. Lots of love, Mamma_B x

    • Harriet August 8, 2017 / 8:32 am

      Thank you lovely – that is exactly as the post was intended. I’ve picked some really poor words, but people seem to have latched purely on to them. H x

  9. August 7, 2017 / 10:15 pm

    A tricky original post and an honest reflection on feedback from some different points of view. I read this as a desire to eliminate “suffering”. A parents greatest wish. But how do we judge suffering? That is the tricky part. I’ve taught many children who have a variety of variations on the human condition. Some clearly suffered. Others thrived in a special kind of way.
    I think humans will always tinker and having discussions about these “developments” helps all human beings to explore what it means, how they individually feel about it, and generate a consensus on morality of what should and should not be permitted.
    I deplore the disgraceful way that H is being spoken to/about. Please can we talk about these things in an adult and respectful manner? If you are hurt/angry by something someone has written please take the time to explain calmly and carefully why this has caused you upset. This is helpful.
    Thank you H for opening this can of worms into the light for all to discuss and share. Thank you to all who contribute to a greater understanding of such a complex and hazard strewn subject.

    • Harriet August 8, 2017 / 8:34 am

      I wish I hadn’t! The twitter masses are going hard. One particular troll has started telling disabled people who disagree with her that they are ableist. In fact, watching her feed last night, someone told her that she shouldn’t pick on others about a totally random topic and THEY were called ableist. It just seems to be the in word.

      I really had no intention or plan to upset or promote eugenics. For one, nothing is “promoting” here, it was just an opinion – and you’re right I meant it purely as a desire to eliminate suffering.

  10. August 7, 2017 / 9:43 pm

    I don’t think you have anything to be sorry for. It’s a controversial topic, for sure, and people will have different opinions. But people with disabilities are not a homogeneous group. There may be some who disagree with you, and others who agree, and still others who don’t see what all the fuss is about. Frankly, anyone who says you never would’ve written this if you understand people with disabilities is being pretty arrogant. Just because someone has a disability, that doesn’t mean they have to agree with everyone else in their “group.”

    My brother has Duchenne Muscular Dystrophy. It’s a degenerative disease that causes him to be severely disabled. He’s had painful surgeries, he can no longer eat many foods that he once enjoyed, he can’t breathe without the help of a machine, and he will never, ever be able to live independently, outside of our parents’ home. He needs help to shower, use the bathroom, eat, get out of bed. Can you imagine if you had to have an audience for every bowel movement your entire life? And not your 2-year-old. Your parents.

    The doctors have always told us that he will die young, but he want expected to live past his early 20’s, and he’s well into his 30’s now, so who knows. Maybe he’ll live a long life, but it won’t be a healthy one.

    It’s also genetic. If there were a cure, which there isn’t, it would involve altering his DNA. My mom spent almost her entire career working for the lead scientist working on developing a cure. My brother has hoped against hope that one of them would work out to something that could alter his DNA and cure his disease. Would this be “playing God?” If it is, I can’t imagine why God would have a problem with my brother wanting to be healthy.

    I don’t know what my mother would’ve done if she’d been able to alter his DNA before he was born and prevent him from being born with this terrible disease. I know what I would’ve done, though. I’d give my child the chance to be born healthy. That’s not the same thing as wanting to exterminate people with disabilities. It’s not eugenics. Eugenics is sterilizing people with disabilities so they can’t reproduce, or aborting babies who you know have a disability. What you’re talking about doing is having the baby, but curing the disease.

    Duchenne has contributed so much to my brother’s personality, so it is a little weird to imagine him having been born without it. But I could also say the same thing about curing him at any age. If they’d discovered a cure when he was 4, maybe he wouldn’t even remember having been disabled now.

    If other people find the idea of genetically altering people to cure a disease so objectionable, well, they are entitled to that opinion. I can even understand where they’re coming from because it’s an ethically gray area. But don’t say that option shouldn’t exist. Don’t decide that because something offends you, my brother doesn’t deserve the right to be healthy.

    Sorry for rambling for so long. This topic is something I care a lot about, and I also really hate it when people leave nasty comments like some people have to you. You keep writing from your heart. You’re doing a great job!

    • Harriet August 8, 2017 / 8:35 am

      Thank you lovely, I’m so sorry for your brother’s suffering x

  11. August 7, 2017 / 8:54 pm

    I honestly think it’s really hard for a mother without a disabled child to understand that we wouldn’t change our children for the world and to know that having a disability does not determine your worth. Hope that doesn’t sound patronizing, but hear me out. I have a beautiful son with Down syndrome and he is my world. Before I had him I could well have thought like you, I was uneducated, knew nobody that had Down syndrome and thought it was a terrible terrible thing. If somebody asked me if I would genetically alter my child if they were going to born with a disability back then I would have said yes. But now I know, now I see that my son is exactly who he is meant to be. He has taught me so much in his very short life about acceptance, inclusion and the beauty of differences. It isn’t about suffering, my son is in no way suffering. In fact, society seems to have a much bigger problem with his disability than he does, his brother does or us as his parents do. So do I believe in altering dna to stop disabilities? Not at all. Illnesses, disease and medical conditions yes, but disabilities no. They are two very different things, my son is not ill and is in fact extremely healthy. Hand on heart, if somebody gave the the chance today to take away my sons Downs syndrome I would not except it. River would not be River and that’s a fact, Ds is part of him and he is perfect. Societies need and desire to be perfect and only accepting people who are ‘perfect’ is exactly why I do what I do and will continue to do so. Education is whats important and it’s impossible for me to take opinions on disabilities seriously until they have taken the time to do so.

    • Harriet August 8, 2017 / 8:44 am

      I see that now Hayley – I’m so sorry for the post causing such offense. I think my issue here has lain in that I have been SO (foolishly) generalising and I haven’t meant to be. I have generalised “suffering” but whose I’m not sure. I do believe that if someone isn’t going to be able to survive to adulthood and is going to be in constant pain that we should intervene. I know a lot of people have commented the same, and even down to parent’s of children with disabilities that don’t have life threatening impacts – mainly because of society and how it treats them. We have such a long way to go with making the world more accessible to people with disabilities and I feel like I’ve really not conveyed that I believe that enough, in fact possibly the opposite.

      • August 8, 2017 / 10:00 am

        To be honest, the fact that you are willing to listen is amazing for me to hear and I’m not angry at all. It’s just a touchy subject, and as a parent with a disabled child it’s hard to hear all the time that people assume I want to change my child. For example, people always make the assumption that I didn’t know River has Ds before he was born, because if I knew then I wouldn’t have chosen to keep him right? I guess what hurts the most is that it may actually be true, because I was ignorant back then and had no idea what having a disability meant. I thought it was a tragedy. I am thankful everyday that I didn’t have to make that decision because River has genuinely made me a better and more accepting person. As corny as that sounds! I’m not offended by the post because it’s obvious that it wasn’t written with malice. I certainly don’t agree with any abuse as we are all adults and in order to understand people need to talk! I actually agree with you on the suffering side, if my child was physically suffering I would want to take that away to. But my son only suffers because of societies views, and that is not something that needs to be taken away from him, but something that needs to be changed within society. The fact that you are taking the time to respond to peoples comments speaks volumes so don’t let it upset you x

  12. August 7, 2017 / 8:27 pm

    ‘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.’

    But this actually represents an incredibly prejudicial and misleading view of what disability even is.

    So many of the limits we face aren’t intrinsically because of our disabilities at all. Some are, but a lot of them are imposed by the prejudices and beliefs of others about what the limits of our capabilities are, or about whether our lives are worth living at all, or about whether we’re actually people.

    In the past 25 years, the life expectancy for people with Down Syndrome has doubled, and the literacy rate of people with Down Syndrome is around 50% (it used to be zero). More than half are gainfully employed. Nothing changed about Down Syndrome. We stopped separating kids with Down Syndrome from their families, throwing them into institutions, and denying them education and medical care. Those limits were never imposed by Down Syndrome to begin with. They were imposed by what others believed about those kids’ lives.

    For just one example. I could go on and on.

    • WalderFrey
      August 8, 2017 / 8:53 am

      Amen! Beautifully stated!

  13. Rachel Rainey
    August 7, 2017 / 6:59 pm

    I am autistic. Over 50% of my family are autistic. I would not choose to be anything but autistic. I have two children, and I would not have chosen to alter their genes to prevent them from being autistic.

    What is wrong with limitations? Why won’t people respect limitations? We have movies like Everything, Everything telling young people life isn’t worth living if you can’t live in a particular way, and to ignore limitations for the sake of love. (I realize there is more to the “illness” than meets the eye in the case of that movie/book, but the point remains the same)

    We use expressions like “rise above” disability, and say things like “the focus should be on the ability”. It puts disabled people in the position of constantly having to prove their worth by showing how much they can do “in spite of their disability”.

    Here’s a thought: Respect the idea that a person can be both limited and happy. Focus on finding out what accommodations can be made to make someone’s life easier, rather than suggesting the world would be easier for YOU if people with disabilities didn’t exist.

    PS It isn’t surprising that Facebook “agreed” with you. There is a reason I use it as little as possible.

  14. August 7, 2017 / 5:17 pm

    So this is what has rubbed Twitter up the wrong way today. This is one hell of a difficult topic. I have hypermobility syndrome which causes my joints to dislocate along with being in pain every waking minute and whilst it’s not life threatening it’s hard. It is limiting and also genetic. My mum has it, my eldest daughter has it and my youngest is showing the signs. Would I have edited that out for them before they were born? I honestly don’t know. On one hand I really hate that fact that I know how much pain they feel just doing simple tasks and that it’s only going to get worse. On the other hand I feel like disability is much like part of our identity although it’s taken me a while to begin to accept my body’s limits. My OH is deaf and needs to wear hearing aids to hear anything. He struggles a lot and hates how much it restricts him but he wouldn’t change it either. I think the disabled community get so much shit anyway that instead of editing it out, more accessiblity and less stigma would be a better way to go with things. I think people have taken offence because it feels a bit like we are considered “less than” and something that needs to be “fixed”. I do totally appreciate what you were originally trying to say though and don’t think you deserve bloody death threats over it. Just wow at that.

    • Harriet August 8, 2017 / 8:48 am

      Yes, from what I can understand some read it that way and others have decided I’m promoting eugenics and I believe disabled people should be culled. Fortunately the really vicious “I hope you and your kids suffer one day, then you can comment on what that actually is” comments seem to have disappeared – or maybe they just blocked my account, who knows. I have had a few emails and DMs from people with threats and “I hope some one eradicates you and your family” but nothing more than that really. Twitter is weird. No one learns and I wouldn’t have moved my thoughts on this topic at all if not for rational people like you who said, ok, this is why you’ve got it wrong. Everyone makes mistakes.

      • August 8, 2017 / 10:25 am

        Absolutely. I think some people certainly have gone about it in the wrong way. There is a difference between being informative and being a plain asshole. Death threats etc help no one x

  15. August 7, 2017 / 4:17 pm

    I very much appreciate you listening thinking and adding this note

  16. August 7, 2017 / 1:15 pm

    I’m proud of you for holding your hands up to where you got it wrong on this and amending the post. Its hard to do that but we are all always learning and we are all at different stages of our journeys. I’m learning more about ableism every day and its upsetting when you realise that you have offended when you didn’t mean to. It takes a big person to say I got it wrong and I’ll go learn more about this so well done for that.

    • Harriet August 7, 2017 / 1:28 pm

      Yeah, it wasn’t my intention at all – I haven’t done enough for the twitter masses like, I’m still getting death threats and being called a Nazi but the intention wasn’t there to offend and I hope that people can see that.

  17. August 7, 2017 / 12:51 pm

    Yeah I found the article hateful and offensive, especially given how much you wrote it from the perspective of how mothers of disabled children. What I heard was “wouldn’t your mother much rather you were born without autism” thankfully in my case that’s not true, but you may have inadvertently confirmed a lot of disabled people’s fear, that their loved ones would love them more without disability/

    Just one factual correction, there is no such thing as mild autism, autism is a binary state, you are either autistic or not. You may experience someone’s autism mildly but you’ve no idea what may go into “passing” in some socially acceptable way.

  18. Kate
    August 7, 2017 / 12:27 pm

    I think you would learn a lot if you were to engage with the disability advocacy groups and also disability theory. Disability and disabled do not mean what you seem to think they mean. The social model of disability sees ‘impairment’ e.g. mobility issues very differently from disability, which occurs when someone with an ‘impairment’ interacts with a world not designed for them – this is disability – not the mobility issue. Here is something you may find useful https://www.scope.org.uk/about-us/our-brand/social-model-of-disability

    There is also a world of difference between illness and disability or impairment.

    I would ask you to educate yourself on disability before posting something which will likely cause a lot of offence for disabled people

  19. Emma Jones
    August 7, 2017 / 12:00 pm

    I do not know i would consider this article “fair and balanced”. Before you decide for disabled people that they are “suffering” maybe you may consider having conversations with those disabled people. Maybe consider having conversations with a deaf person on their take on if they would want to “cure” their deafness, or talk to an individual with Autism Spectrum Disorder (something of which is clear you know nothing about) if they think of people or parents who find this overwhelming need to fix or even eliminate who they are. This is not only an ablest way of thinking but also the neurotically mindset of this is the only way a brain can properly work. Pretending to support disabled individuals while wanting to eliminate them, because you have no understanding what so ever of who they are is in fact the opposite of supportive.

  20. Charlie
    August 7, 2017 / 10:26 am

    Great post and some really good points. I hadn’t even thought of the poorer parents in society being the ones who were left without a choice and therefore disability becoming a ‘class’ issue. Wow. It’s a huge & emotive topic for sure. I do think that if I could go back in time and remove Harry’s autism & cranio facial condition I probably would but that’s so hard looking at the boy he is now (well I can’t really see him, he’s a blur of autism bouncing right now!) He is who he is BECAUSE of his conditions and I would never have known this boy then. But we’d have been spared a lot of the trauma of our journey. I think I’m a yes but I’m aware I’m rambling so I’m off! X

    • Autistic Adult
      August 7, 2017 / 4:10 pm

      Disability is already a class issue. The occurrence of disability is higher among the poor, and the access to services and support is less.

      Your child’s autism didn’t cause your trauma, a society that is not accepting of divergent people caused it. When strangers give you glares, when other children bully and snicker, when school administrators try to deny your child services, when teachers punish your child for stimming, when doctors aren’t familiar with a condition, that is THEIR problem, SOCIETY’s problem, not your child’s problem.

      Don’t try to change who your child is, change what the environment around them is.

  21. August 7, 2017 / 9:55 am

    A fair and balanced post hun. It is definitely a difficult one and the more I’ve thought about it the more I think perhaps my view has come from one of being saddened when people choose to abort babies because of a disability. Not that I judge those people, it is entirely their choice, but so many wonderful friends of mine have children with Downs and to think they could have aborted makes me sad as they are the loveliest children. So I guess with DNA changes comes losing out on those precious children. But that is aborting once a baby has come more than the egg so I guess it is different. I don’t really know. Is taking out that disability altering them from who they would have been as a person? Do we want to be an all perfect race? So many variables that in the end I just think death is a part of life, disabilities are a part of life as we know it and that is just how we have evolved. If in doubt, leave it out my mum always said and in this instance I reckon we should leave well alone. Lord that’s a waffle and I’ve probably dug all sorts of holes haha x

    • Harriet August 7, 2017 / 10:17 am

      Thanks lovely. I totally see where you’re coming from, and having a few friend’s with disabilities I do think it’s a really hard line to walk, but I hope that one day the option will be there for the parent’s who are affected. I guess if we keep telling people that their disability doesn’t determine them as a person, doesn’t define them in totality, why would they be a different person without it. It’s really hard to know.

      • Autistic Adult
        August 7, 2017 / 4:45 pm

        Our disabilities do define us as people, at least partially, and there’s nothing wrong with that, unless you think being different is not OK. Autistic. Deaf. Blind. Wheelchair user. Dyslexia. Down Syndrome. Cerebral Palsy. We have communities. We create communities. We’re not considered “defective” or different in those communities. Visit a school for the blind or a school for the deaf, and you’ll find that the environment is adapted there so that being blind or deaf, respectively, is not a challenge.

        The curb cuts on corners that allow you to easily push your stroller from one side of the street to the other were brought about by disability activists demanding them from city governments, and too often having to force the cities’ hands by smashing sidewalk corners with sledgehammers: http://www.denverpost.com/2017/07/05/adapt-disabled-activists-denver/

        Autistics had much to do with the development of radios, science fiction, computers, and the internet.

        Deaf people developed (and continue to develop!) sign languages that allow parents to more easily communicate with their babies before they master speech.

        People with dyslexia often have incredible visual-spatial skills that make them excellent at building and making things.

        If people with disabilities didn’t exist, many advances in technology, design, art, language, communication, etc. would never have happened. But, don’t let that make you think our only value is in usefulness to neurotypicals and the temporarily-able-bodied; we are full human beings, and as such, deserve full human rights, regardless of what we can or can’t do for others NTs and TABs

      • August 10, 2017 / 5:18 pm

        ” …but I hope that one day the option will be there for the parent’s who are affected.”

        Shouldn’t the decision-making rest with the disabled person themselves who’s affected? This is really a longstanding issue in the disability community, that so often our parents’ perspectives are assumed to stand in for ours, or the ways that our parents feel affected are assumed to be sufficient to understand our experiences. And they’re really not.

        “I guess if we keep telling people that their disability doesn’t determine them as a person, doesn’t define them in totality, why would they be a different person without it.”

        Well, this is really the problem with the whole “your disability doesn’t define you!” dogma. In a lot of ways, it does. Depending on the disability and the person, obviously, but a lot of disabilities are inseparable from the whole fabric of ourselves and our experiences of ourselves in the world. Particularly perceptual disabilities like autism that affect everything about how we experience the world on the most basic levels. Trying to forcibly separate the experience of a disability from someone’s identity or experience of themselves as a person causes depression, self-blame, alienation, and even suicidality when it turns out that that separation isn’t actually possible.

        • Harriet August 11, 2017 / 12:49 pm

          Thank you for this.

          Honestly? Yes and no. That is the same mentality as if you get pregnant you should proceed with the pregnancy no matter what and I don’t believe in that. To me, there may be a host of reasons that someone does decide against continuing with a pregnancy if their foetus has something medically wrong with it. I don’t judge people on that – I don’t feel it’s my place.

          I have never really considered that this is the way people would love at a disability – I have always had the “your disability doesn’t define you” rhetoric shoved down my throat and never thought of it as anything other than positive – but now, after speaking to so many who have sought to educate and help me learn better, I feel perhaps I understand more how some of the disabled community feels about their disability and I totally understand why this post may have caused offence.

          Again, thank you for taking the time to help me do better and know better.

Leave a Reply

Your email address will not be published. Required fields are marked *