On genetic engineering

Trigger warning: Disabilities, Abortion

Disclaimer: I know I hold an unpopular opinion, which I’m trying to work through logically on paper in this post; therefore, it’s likely there’s some unintentional ableism coming through. Please be gentle.

 

I support any and all research that could potentially correct for malformed genes in the womb. I support prenatal genetic engineering.

Here’s how I see it: Pretend I’m pregnant and the doctor says, your baby has genes for the leg thing you have or Down Syndrome or severe Autism, but with this tonic, I can render those genes dormant and your baby will be healthier. I’d take it in a heartbeat. I fully support the fact that disabled humans are still human beings and still people, and I wouldn’t dare try to imply that someone is inferior because they have a physical or mental disability, but… disabilities make life harder. A baby born with a disability has that much less ability to live up to their true potential, has to work that much harder to get the same results as their peers, and on top of that, if it’s severe enough, has to deal with discrimination and othering. Why would I want that for a child? Why would I want that for anyone I love? Life is hard enough without having extra challenges on top of that.

Now, the one exception I know of is the Deaf community. A child born to two Deaf parents is going to be raised within Deaf culture; however, there is an unfortunate tendency for Deaf culture to other and exclude the hearing. It’s sad, but I can see not wanting to correct the hearing in a child born into that situation, because they’d be at a disadvantage being the one hearing child in a room full of Deaf children. Any other community that works that way I can totally understand turning down our hypothetical magical tonic.

Still, though, why is this outlook bad? Why do I come off as some kind of eugenicist Nazi or something for pointing out that people with disabilities have things they cannot do as easily, and therefore, have a bit more of a struggle? Why can’t we talk about the fact that disabilities suck and in a perfect world nobody would have them just like nobody would be murdered or have a miscarriage or any of a number of awful things that could happen to a person? Why do I feel the pressure to pretend that people with disabilities somehow don’t have extra limits because of their disability? I mean, I totally understand that people with disabilities are still people and should be treated as such, but if you’re in a wheelchair you can’t compete in a triathalon, and if you’re autistic it’s much more difficult to interact with people. These are things that are true. I want my baby to be able to run a triathelon if she wants. I want her to be able to talk to anyone at any time without feeling intimidated or pressured or othered or excluded, and while I can’t change the whole world for her, if I can make these things easier I would.

The real borderline case is the case where there is no magic tonic and you have to choose between having a child with disabilities and aborting the fetus. That one, I feel, depends on the situation and the beliefs of the mother; there is no definite answer, not even for me personally. If I was working two jobs and still relied on welfare to make ends meet, I’d abort for sure — I can’t provide the kind of care the baby would need, and it’d be hard to find someone willing to adopt a disabled baby and even then there’s abuse rampant in the system. But then, I’d be likely to abort any baby in that case. I don’t want to bring children into a world where I can’t provide for them. If I was a billionaire, I’d have no problem with having a disabled kid. I’d remodel my mansion to be some kind of paradise custom-tailored to their needs and hire an army of servants to cater to their whims and they’d be like, the happiest fucking kid on earth. But again, I’d do that for a normal kid too, just with less remodeling. Anyway the point I’m trying to make is that in that situation I wouldn’t blame anyone in that situation for any choice they made (except things like “have child, leave in dumpster to die”, that’s fucking horrible).

I don’t know. I guess it’s a fine line between “The world would be better off without people like you in it” and “You would be happier if you weren’t disabled”, but I believe the latter and not the former. There’s room for everyone in this world. It’d just be nice if nobody had to suffer. Eliminating genetic disabilities (in living people, not by killing people) would make a world with people who suffered less than the world we have now, therefore, I support it, because I support things that make people suffer less.

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8 Responses to On genetic engineering

  1. Firedrake says:

    I can’t help remembering an interview in the 1990s with a group of middle-aged gay men, who were lamenting the demise of the “bathhouse culture” because gay men didn’t need to hide who they were any more. Well, yeah, acceptable losses, I feel.

    Freely available abortion means freely available abortion, not “oh, well, not for situations like that“.

    Entirely agree with your last paragraph. With the one proviso that all gene sequences should be recorded, because there’s always the possibility that they may turn out later to have uses other than making their carriers’ lives unpleasant and short.

  2. Anonymus says:

    The thing is, everybody’s life is hard. The worst thing that ever happened to you in your life is hard and it’s going to take all your emotional resources to deal with it. It’s why little kids have screaming meltdowns when they don’t get a lolly in the store. They can’t imagine anything worse than not having that lolly, and they don’t have the emotional resources to deal with it; they haven’t experienced worse things. That little kid screaming in the store is learning something hard about life (and the parent giving in and getting the lolly is prolonging the learning experience). When they get older, and have experienced harder things, not getting a lolly seems sort of trivial, which is why I don’t start screaming in stores when I realise I don’t have enough cash on me to buy dinner and chocolate too. I have experienced sadder things than the lack of chocolate, so I can cope with it. So, I’m not sure eliminating hardship at all cost should be our ultimate goal in life. We shouldn’t go out of our way to seek hardships, or to create hardships for other people to “help them grow”, but hardships will come along no matter what we do.

    I have multiple disabilities. They are mostly invisible disabilities. They make doing certain things harder. But they also are not the hardest things I’ve had to deal with. Disability makes life harder primarily because of people’s attitudes towards disability and because of barriers that don’t need to be there. I can’t use a telephone, but if more companies would get with the modern age and put information online, if my ISP would allow e-mail complaints instead of requiring me to get someone with less technical knowledge than I have to phone them, it wouldn’t be much of a problem. My frinds know to send me text messages instead of calling. It’s not that big a deal.

    I also have fairly severe psychological disabilities. They prevent me from doing all sorts of things and they mean that I have to do a lot of things in a different way than other people do. But in an ideal world, I’d be able to get to help with the things I need help with and could help other people do things they need help with and it would all balance out.

    I have some trouble with basic living skills. Some of the things I need help with are things that most people are able to do for themselves, and so this is classified as disability.

    But nobody is self sufficient. Do you have a toaster? I do. Could you build one yourself? I couldn’t. If you could, then I bow to your prowess. I don’t think I could even describe how a toaster is made. I’m unable to grow my food, raise my own pig, kill it, cure my own bacon. We all rely on other people to help us out with the things we can’t do for ourselves. It’s just that some people’s needs are labeled “special” and “different” and we’re considered a burden on society because instead of using a mobility aid like an automobile because we have trouble walking 20km, we use mobility aids like wheelchairs because we have trouble walking more than a few steps, or at all. We all use mobility aids like airplanes because we have malformed arms that don’t generate enough lift and we can’t get more than a foot or two off the ground with our own leg power.

    All of us begin life unable to walk. Ideally, the world would be set up in a way that acknowledges this. Stores would be made with ramps that are friendly not only for people in wheelchairs but for mothers with strollers.

    Another thing to think about: being black makes life harder. By the time a black child is 5 or 6 years old, they will have already know all about racism and will have the idea that they are inferior because of the colour of their skin and the texture of their hair. Is this a problem for genetic engineering or should we fix society? And what of the higher incidence of skin cancers in people with melanin deficiency? Should genetic engineering make those of us who are white darker to reduce our skin cancer risk or lighter to reduce the level of discrimination we face? Being female makes life harder. We don’t get paid as good, we have to worry about violence all the time, and on top of all that, every now and then we start bleeding and it hurts like hell and it lasts for a week and the pain is mind bogglingly awful. Should this be fixed with genetic engeering or with changing society (and developing better pain medications)? Being gay makes life harder, mainly because of discrimination, but there’s also the physical component for those gays who want children and can’t get them without outside help. Being gay might have a genetic component. Is genetic engineering the way to go? No. If you took away my gayness, I wouldn’t thank you. The gender I’m attracted to is hot, okay? Don’t make me attracted to the not-hot gender. 😛

    If you took away my disabilities I wouldn’t be me anymore, and my life would seem, from my subjective perspective, to be just as hard as my life seems to me right now, because my current struggles would be invisible to my able-bodied self and I would have acquired a different set of emotional tools over the course of my life. My personality was formed partially on genetics on partially on the aggreggate of life experiences I’ve had. Different life experiences = different me. Maybe not a bad me, but not the me I know and love.

    And a word about bullying. Kids bully each other over every unreasonable thing. The way a person’s name sounds, the shape of their noses or ears, nervous habits like nose picking or nail biting, disability, race, gender, perceived sexual orientation, poverty, non conformity to whatever. The solution is to teach kids not to do that kind of thing, not to try to genetically engineer all those differences away so that there’s nothing left to bully a kid over.

    I do think that genetic engineering has a place with disabilities that cause death in babyhood or early childhood, and with disabilities that cause excruciating physical pain, like brittle bone disease, or like migraines. But disabilities that just make somebody interact with the world in a different way, like blindness, well a blind person can do anything a sighted person can do except see. Blind people can read (braille, audiobooks), use computers (text to speech technology), live alone or with others. Sure a blind kid probably won’t grow up to be a graphic designer, but neither will a sighted kid who isn’t that good at drawing. There are lots of careers out there and there many of them that I’m not suited for, some because of disability and others because of plain ineptitude. I’m never going to be a concert cellist, or an opera singer. But neither will lots of able bodied people.

    Luckily, I live in a society where if I want to eat food but am unable to grow it myself, I can buy some. If I want to listen to music but am unable to produce it myself, I can turn on the radio. If I want to share my ideas with someone living halfway across the globe, I can turn on my computer that was built by someone other than me and type on my keyboard, the mechanics of which are largely a mystery to me. I am unable to make my own clothing, but I can buy clothes that other people made. And my brain is wired very differently from a normal person’s, but I can do things that normal people can’t and I can get normal people to help me with the things I can’t do so well.

    My disabilitord don’t make my life nearly as hard as the ableism I regularly face does.

    • yamikuronue says:

      I fully agree that we should work to remove or reduce ableism and to accommodate people with different circumstances. But the thing is, that’s a big, society-changing goal. Often it feels like the only things I can really affect are small, person-changing goals. Should we automatically ban the ability to affect small-scale things in order to promote large-scale change? Does that really help, or just make more people suffer in the meantime? I’m not sure the answer myself .

      Maybe the difference has to do with the type of disability. I suffer pain in my legs. Every day, I’m in pain. Every day I’m faced with tasks I just can’t complete because I can’t bring myself to face the certainty of yet more pain. My legs function, however; I do not have a wheelchair, a cane, or any sort of walking aid. Supposedly, the physical therapy I do will, in the long term, increase my ability to walk and decrease my pain. In the short term, I’m paying a good sum of money for an hour of worse pain than normal, followed by residual worse pain for a few days, followed by…. no observable long-term improvements yet. I can’t just not walk. Being a member of our society involves being able to get from place to place easily and I don’t qualify for assistance with that. If I didn’t have this pain, I’d see a marked improvement in quality of life, but this isn’t the sort of thing that’s shaped me (probably because it was never this bad as a child). Maybe I don’t qualify as disabled because of that factor, l don’t know. But for things like mine, I’m inclined to point out that I’m who I am partially because of the terrible time I had as a teenager, but I still wouldn’t wish that sort of pain and misery and self-loathing on anyone else. I would much rather have turned out to be a person who didn’t have the continual struggles that resulted from trauma. Trauma didn’t create the things I value in myself: my creativity, my ambition, my drive to succeed, my intelligence, my inquisitive nature. It created the neuroses that hold me back from realizing my potential.

      Then there’s also the class issue. Blind people can read… if they can afford a computer with good text to speech software in the first place. It’s easy to compensate for mental differences if you have a good support system, but if I didn’t have the people in my life I have now, I would be dead. There were several distinct points in my life where my support network was threadbare and I was suicidal. I could just have easily have met people who could not have helped me. We have to rely on our environment to some extent, yes, but the extent varies from person to person, and being more self-sufficient increases the odds of being able to achieve any given task. Again, having to rely more on other people than is absolutely necessary can prevent someone from reaching their full potential.

      Thank you for taking the time to write such a detailed response, though. I do feel as if I understand a little better. The biggest problem is that life is screwed up and broken so no question like this ever has one good answer, you know? You can get six people with six different opinions in a room and each of them has a strong basis in fact and there’s no way to reconcile it. If only life was more like software development :/

      • Anonymus says:

        Thanks for replying. That makes a lot of sense. I think one major difference in our perspectives is that I don’t see genetic engineering to be an easier to accomplish goal than changing society. Society is already changing, albeit slowly. And even though we’ve mapped the human genome fully and are able to do a lot of really cool things with biomedical engineering these days, there is still a long way to go. I’m not a biomedical engineer, so there’s little I can contribute to that field, but from what I know of the matter, it takes years and years of research and lots of funding to make progress in that arena. I support things like curing cancer and improving quality of life by reducing pain, and I also support things like cochlear implants for adults who can choose whether that’s what they want or not.

        And any progress made in the genetic engineering for something like cystic fibrosis is only going to help the people with cystic fibrosis — I’m not sure there’s a lot of cross over between a genetic cure for cystic fibrosis (which I would support — increasing people’s life spans is a good thing, especially when they rarely live to their 30’s.) and a genetic cure for something like downs syndrome. The genes involved are completely different and so a lot of work would have to be done over from scratch. There are a lot of different disabilities out there, so it seems like a huge task. I couldn’t say whether it’s a bigger task than changing society or not. From where I sit, the size of the tasks seem about equal, and the only one of those two tasks that I have any ability to make a dent in is the changing society part.

        I think you definitely qualify as disabled. And I definitely support biomedical engineering solutions to pain. I have chronic pain myself and I would be happy if there was some medicine I could take that would eliminate the pain. The point of disability activism isn’t “being in pain is so much fun! let us continue to be in pain”, it’s more that we don’t necessarily need solutions that make us appear able bodied or look able bodied, we need solutions that lessen or eliminate the pain we experience, or let us do things in our own way.

        I know wheelchairs are expensive (I don’t have one or need one, but I’ve looked at the costs all the same), especially if your insurance doesn’t cover it, and there’s a lot of stigma about using a wheelchair if you’re anything less than paraplegic — people think that you should overcome your disability and do everything to look able bodied, even if that means walking in great pain or having to take breaks, to curtail your fun time. It’s backwards. If a person could be helped by a wheelchair, they should have access to that wheelchair, which will greatly increase the number of things they are able to do and the time they can spend out in the world doing the things they want to do. People aren’t confined to wheelchairs; lack of access to wheelchairs confines people to their houses. A relative of mine was in great pain for over a decade, every step she took was agony, but because of internalised ableism she didn’t get a wheelchair and because of ageism she delayed life changing hip replacement surgery for a decade. She was proud of how long she held out against it (hip replacement is for old people), but if she’d had the surgery ten years earlier she would have had ten more years of doing things that she used to like to do but is only now able to do again.

        Adaptive technology is expensive, you’re right about that. Your quality of life would probably be improved if you had more access to it. But genetic screening is also expensive. Fixing the genes of an embryo that’s going to develop a disability is also expensive — vastly more expensive than buying a wheelchair or a hearing aid. This is another reason why I don’t think genetic engineering is going to solve the problem. We’ll just have rich people who can afford better genes and the poor will not be able to afford genetic cures and will end up disabled anyway, just the way the poor cannot afford adaptive technology today. I wonder if a wheelchair would be cheaper on ebay? Or freecycle? Craigslist? A cane, especially forearm crutches might be available, and those are cheaper than wheelchairs.

        I used to think that the traumas I’ve experienced didn’t create anything I value in life, and certainly they’ve created a lot of hardship that I still struggle with, but as time passes and some of the wounds heal, I’ve changed my mind. I gained a lot of empathy for other people’s suffering because I know first hand what it’s like. Being underprivileged in certain areas of my life gives me insight into other people’s struggles. I’m a better listener, as a result of my trauma. I am interested in accessibility, and know a lot about assistive and adaptive technology even beyond my own disabilities. I’m not saying that the trauma I experienced was a good thing, and if I saw someone else in a situation like the one I was in, I would do everything in my power to help them get out of that situation. But I wouldn’t take back what happened to me, as bad as it was. And if I hadn’t been through hard things in life maybe I’d be oblivious to the struggles of people who are in a hard place. Maybe the me who had an easier life would have been more petty than I am today. Maybe I would have shallow. I would probably be better off financially than I am now. I would probably have a better career. But if the worst thing that had ever happened to me in life was not getting to go to prom in a limo, maybe I would angry and bitter about that all these years later. Instead, I can’t remember how I got to prom. Probably my parents drove me. Maybe the trauma I’ve been through allows me to coast through some of the lesser problems life throws at me.

        But even that’s not wholly a good thing. As a result of trauma, I’m very good at adaptive to situations and getting by with less and making do. When I’m in a bad situation, my first response is to try to cope with it somehow, not to fix it. When my toilet broke, it took the landlord months to fix it and I got used to flushing with a bucket. The landlord hasn’t fixed the mosquito nets so I get used to not being able to open the windows in summer even though I don’t have air conditioning. I get by instead of agitating for improvements to my situation. But on the other hand, I don’t sweat the small stuff. And lacking a flush toilet and air conditioning and not being able to open the windows in summer is small stuff because I’ve been through worse and I save my mental breakdowns for the big stuff, and there’s always plenty of big stuff.

        • yamikuronue says:

          See, in some ways I’m the opposite: I tend to have anxiety attacks and become deeply unhappy when I feel like I’m losing control over my life. As a result of trauma, I need someone to lean on more frequently, and am perceived by those around me as being weak and needy. I have trouble disagreeing with authority figures, which leads to not being able to fix bad situations in some cases, and often have this off-balance feeling where I doubt my instincts because I’m convinced that everyone around me knows something I don’t and as soon as they realize that they’ll think badly of me. I have to fix things or arrange for them to be fixed personally ASAP or I’m convinced they’ll never get fixed and my brain conjures up this downward spiral that it thinks the rest of my life will become. Meanwhile, I look around me at my close friends and find people with empathy, people who listen, people who try to help others. Thanks to my own innate curiosity, I continue to learn about other people on very different paths, and try to understand how they must think and feel. Maybe my anxiety has increased this trait in me, but maybe it didn’t. Maybe I was always going to be similar to how I am now.

          I suppose if you took away everything, I’d be totally different. From day one, I didn’t behave like other girls; if I did, I’d probably be a different person. But I honestly don’t see us developing genetic engineering solutions for tomoboyism or homosexuality (well, maybe homosexuality, just because of the push from the Christian Right) or inquisitiveness or that weird feeling that I must be different from everyone else, mostly because who would fund that? What good would it do? Maybe I’m naive. I also am vastly in favor of socialized medicine which would drive down the cost of such procedures, especially once insurance companies realize that paying for a genetic alteration now is less expensive than paying for a lot of adaptive technology later.

          I guess what I’m getting at is that I don’t feel “I empathize better with the downtrodden because I understand what it’s like” is a good tradeoff for “I am in pain all the time and have trouble enjoying things I used to love”. But that’s a value judgement, and everyone places their judgement on what is and is not an even trade someplace different. I’m very much a “the silver lining does not justify the cloud” kind of person.

          • Anonymus says:

            I had a long reply and then my pos browser crashed. I’ll try to type it again. Maybe it’ll be shorter winded.

            I am sorry about what you have been through and for the problems it still causes you. I hope that things will get easier with time. I’m not saying trauma is good or that I’d wish it up on anybody or that it’s justified because it can make us stronger once we come out the other side. Like you said, the silver lining doesn’t justify the cloud. I would never put my children through what I went through, or advocate for not getting people out of a bad situation. I’m all for making already existing situations better (if largely incapable of improving my own situation because of inertia).

            I used to want a teleporter to go back in time and fix things that had gone wrong in my life. I can understand wanting to take all the bad stuff away. I don’t want that anymore. I wouldn’t change a thing that I’ve been through, not even the worst of it. But I can understand the wanting. I wrote a story about that once, about going back in time and righting the wrongs and taking the bad away. If I wrote it now, I’d write it very differently. I’d write about going back in time to right the wrong, coming back to the present and finding yourself in a completely different country, married to someone you don’t know, speaking a language you haven’t learned, with children you don’t recognise calling you mommy. I know for a fact that I would not have met my current partner if it were not for the trauma I have been through. It was worth it, because it meant finding her.

            And with genetic engineering I’m all for reducing pain and increasing life spans (though not indefinitely and we’re already overpopulated, so I’d rather increase the life spans of those who aren’t making it to adulthood, due to disability, poverty, illness, what have you, than increase the lifespans of the general population. I think 70 years is plenty of time for anyone, but once we have some solution to overpopulation, maybe space colonisation I dunno, then we can start thinking about increasing those 70 years.) But why find a genetic solution for a disability that doesn’t cause physical discomfort or loss of life when a person can live a perfectly good life with assistive technology? We all have needs that we cannot meet on our own, so why can’t we adapt to everyone’s needs instead of having the onus be on the disabled person to adapt to everyone else?

            In my work with web accessibility, I’ve seen that what benefits people with different disabilities often benefits the general population as well. Providing images, like screenshots, in the help documentation helps people with dyslexia, but also visual learners (the majority of the population). Using clear, clean wording and short, simple sentences helps the intellectually disabled population but it also helps everyone else using the software to figure out how to do what they want to do as quickly and easily as possible. Making webpages less cluttered helps people with ADD and ADHD, but it also makes it easier for everyone else to find things on the page. And offline, wheelchair ramps help wheelchair users and mothers with strollers and people who use rollerblades as their main means of transportation. Having elevators is a must for wheelchairs and for people with pain walking, but it’s also good for people who have been out and about all day and are tired. Providing captions on videos helps the deaf, but it also helps language learners and people using library computers with no sound who don’t have headphones on them. Making the world more accessible benefits everybody.

            You mentioned running a triathlon in your entry, and I meant to comment about that but I forgot. Look at the paralympics and the special olympics. Disabled people can run triathlons, if they want to and if they have access to healthcare and medical technology (wheelchairs, synthetic limbs, pain medications, etc.) There are games for blind people like tennis (it’s played with a bigger ball that is filled with beans that make a rattling sound, so the person can hear where it is. It is allowed to bounce three times before they must hit it, because it makes the most noise when it bounces. Some blind people are pretty good at tennis. I’m sighted, but I’m hopeless at hitting balls, with sticks or otherwise. There’s wheelchair basketball. There’s all sorts of things that a disabled person can do, if they are interested in sports and if they have access to the technology they need to take part. (I’m all for socialised medicine myself.)

            Like you, I don’t believe that we’ll solve homosexuality or tomboyism with genetic engineering, but I do believe it is a potential future, and that we should prevent that particular potential future because that way lies dystopia.

            Also, a bit about potential. What does potential mean? Does it mean the ability to become anything, the way the seed has a potential to become a tree? I think when we’re born we all have the potential to be pretty much anything, but over time some of those potentials go away. Some of them go away because of genetics (but I know of several deaf musicians who make good music, so…) and some go away because of lost opportunities, and in the end we become what’s left. But I don’t know if that’s a problem. To bring up concert cellists again, I suppose I might still have that potential — if I could afford a cello and then spent 10,000 hours practicing on it, then that’s a potential future for me, I guess. But for all intents and purposes that potential is lost. My parents didn’t give me cello lessons (I never expressed interest in it), I don’t hear all that well, I have spent time and energy cultivating other talents, so that door is mostly closed. As an infant, perhaps I could have grown up to be a doctor or a lawyer, but I didn’t, despite having good genes (and a good initial environment) for intelligence. Is this a waste of my potential? I don’t think so. I’m happy not being a doctor or a lawyer.

            I think, to me, “living up to my full potential” just means doing my personal best in any given situation. My potential might be smaller than someone else’s potential because of my genes or because or because of trauma or because of something else, but if potential is the best that I can do, not the best someone else can do, then that’s all right. Maybe my intellectual potential is the size of a cup and someone else was only given a thimble and someone else was given a larger glass. All I can do is fill my cup as full as it will go. It doesn’t matter if my cup has more water in it than someone else’s, what matters is the percentage to which my cup is full. Certain disabilities mean having a smaller container, but the person still has the potential to fill that container as full as it’ll go. My half full cup is worth less than someone else’s full to the brim thimble.

            Also, I don’t think intelligence is the only measure or even the most important one. I think the capacity to love is far more important to leading a happy life. Lots of people are jerks and intelligence doesn’t seem to help people to become less jerks, so there’s some other measure involved there. For a long time my capacity for love seemed a lot smaller than other people’s. I was an adult before I learned to relate to people. But I’m an adult and I’ve found love, found the ability to love and to care about things. It was hard. I had to work to get there.

            • yamikuronue says:

              As someone who’s lost the ability to run and ride bikes (for all intents and purposes), I’ll say this: wheelchair races may be a fun, exhilarating sport, but it’s not the same as running. This country has a long habit of segregating people and insisting that the smaller group’s things are just as good as those belonging to the larger group, but it’s never true. I feel that the special olympics are a good thing, don’t get me wrong, but I’d rather see science-fiction techniques that would allow people to be in the regular olympics if both possibilities were equally likely, you know?

              I think we can definitely agree that there’s a lot of grey when it comes to…. how shall I phrase this… I want to say “soft” disabilities, the ones that change the way you interact with the world without also including a good deal of pain and/or corrective surgery. There’s a big difference between scoliosis and dyslexia, for example. I suppose it’s human nature to consider situations similar to one’s own first; when I think about disabilities I don’t think about things like dyslexia or ADD, not because those aren’t conditions that require special care, but because those are conditions that are manageable and not painful. I’d definitely donate to a genetic cure for, say, cerebral palsy before I donated to a genetic cure for dyslexia, you know? The one seems a lot more cut and dry.

              There’s more to be said but I think I’ve run out of courage on this issue. Thank you so much for discussing this with me, though. You’ve given me a lot to think about and now I can see a bit more of why the “no genetic therapy at all” position seems appealing. I think the right answer, or rather, the answer that will lead to the most happiness, is still somewhere between, but closer to your perspective than I had previously espoused. Maybe we’ll get lucky and create a society where the worst disorders can be easily cured while the ones that really boil down to different lifestyles will be fully accommodated to the point where no one group is at a major disadvantage over another
              (ramps and screen readers for all!).

              • Anonymus says:

                I do see what you mean (And agree that separate but equal is anything but). I’ve enjoyed discussing this with you too, and thank you for listening to my differing opinion. I hope nothing I said was triggering for you. I think there are a lot of areas where we agree more than we disagree. I also wanted to say that it’s okay to grieve for your loss of ability — it’s natural and normal and part of the process. My hearing really frustrates me sometimes.

                I’d recommend reading blogs by other disabled people, like Dave Hingsburger, a man who’s uses a wheelchair since an accident in adulthood, who works with intellectually disabled people or Ballastexistzenz, a woman with a severe form of autism. It’s interesting reading about their experiences and I’ve learned a lot from them.

                Take care, and I wish you well.

                Take care.

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