Some people that are hired to get the job as bioethicist done seem to think it is helpful to use (!) "disability" to help the hairy and somewhat futuristic discussions related to "human enhancement".
The attempt to employ "disability" - as state, as condition, as social issue, as practical problem, as visual disfigurement, as undefended position - to "base" a "debate" regarding human enhancement on, is, however, an ill fated attempt, a doomed approach, an illogical start, a confusion of worlds and ultimately, should be abandoned.
As we now shall find out, a key deviation from practical logic occurs at the moment when bioethicists believe that they can "see" the world, visually. These people look at disabled people such as me, and believe that by looking at an amputated arm "that they see", in a sense, that "they understand"; they then "see" that I wear a prosthetic arm, possibly with a hook device, then they "see" me grabbing a piece of meat off the grill and they go "aw... that is how enhancement must feel". Really, however, my favorite shirt slogan goes "it only looks like that". They "see" nothing. What they visibly see seems to mislead them in so many ways. That is where they take the wrong turn on the road to discussing "human enhancement".
A superficial scratch at the extent of the actual issues regarding my below elbow amputation is reflected below (link); that diagram gives a summary (!) of the overall situation. And with this text here, I follow recommendation #31 of the diagram below.
Really, when you see me wearing the prosthetic hook to lift the meat off the grill, you may not visibly see the constant levels of pain, skin issues and stump circulation problems, you do not see just how much work it was to customize that prosthetic build into submission, how little it offers in terms of manual dexterity, and how all that fits into a social environment.
- "Critiques of enhancement aids in the context of athletic performance typically rely upon two claims: first, that achievement has not been earned and secondly, that the use of aids is unfair because not all athletes have equal access to them. But, can these arguments be sustained in the case of Oscar Pistorius? Is the benefit he gets from his prosthetic legs an unearned advantage? The argument about equal access to prosthetic legs is alarming in its implications—that other runners should remove their ‘natural’ legs and don prosthetic legs like his in order to compete with him. But, short of this, what can Pistorius do? While other sprinters can experiment with high-tech shoes, and wear friction-free fibre, utilise computer-aided training techniques, imbibe nutritional supplements, and work out highly technical chemically balanced diets, it seems highly questionable to position the fault line between the acceptable and the unacceptable at Oscar’s legs. Here, we see the concept of enhancement failing to adequately manage the complex relation between the contemporary highly technologised and always already modified but so-called ‘natural’ body and the enhanced/modified so-called disabled body"[bibcite key=karpin2008going]
Usual arguments of bioethicists trying to discuss prosthetic limbs in context of "enhancement" use two people in this world to "make their case" - Aimee Mullins, and, Oscar Pistorius. To enable them to "make their case", a few hot mess type confusions are necessary as otherwise the argument won't work.
Let us first address the blade runner. Oscar Pistorius tries to compete in a race, and as all competitive sports have it, an "unfair advantage" is one that is outside the rules. So the term "unfair" is in no way related to the question whether anyone can access stuff. If playing tennis requires a racket that meets the specifications, no one cries foul if a potential player cannot organize themselves a suitable racket. Same for any other sports: rules are rules, and they define what is fair. If an existing rule is not specific enough (and Pistorius certainly contested that aspect of the rules at the time) then there can only be "a question of unfair advantage". So here we have a "question of unfair advantage". To say that access to prosthetic legs is unfairly distributed has absolutely no bearing to the use of the term "fair" in context of running competitively under sports rules. Already there, we see just how confused the people that write such stuff really are. Outside of competition and training rules, the discussion of "unfair" will rather quickly deteriorate into utter complexity, and, sure, access to running prostheses may be unfairly restricted by, say, how much Ossur wants for them - but Ossur as such already is an issue on its own. Technically, (non-disabled) swim competitions do not allow for any prosthesis with the effect that I, as disabled swimmer, am allowed to only compete in non-disabled competitions as long as I qualify, as long as - despite the handicap - I am good enough, as is, without any orthopedic aid. One might then say that is "unfair" towards me because length of arms and availability of hands is distributed "unfairly" but really, the rules being as they are, that is what it is - and based on the rules this is actually very fair. With running, they may quite easily allow all runners for general running competitions to run "only without any aid such as a prosthetic limb" - and that then constitutes a very sensible regulation. If spring mechanisms - and who would doubt that prosthetic blades are not spring mechanisms - are also made available and allowed for non-disabled runners, then we achieve rule based fairness on a technical level for all participants - but then, different (higher) speeds may result in even faster races, leaving handicapped runners far behind once again. So really, we will then see people be unhappy once more - until we can recognize that it never was about fairness but about winning. And really, the debate all started with an attempt to see a disabled runner win in a non-disabled world using no unfair tricks. And you have to realize that as long as the disabled runners lag far behind, no one even cares about technical fairness.
With that in mind, you can now appreciate that I swam in the 2012 FINA World Masters Championships and I got 10th last in my age group over 100m freestyle; that means, that with absolutely no prosthetic aid on, I beat 9 world class swimmers that were not disabled - and there was no technical unfairness whatsoever. There is a lot of true achievement in that. In 2015, I qualified for four races of the FINA World Masters Championship but did not go. I kept training, better investment of time.
- "Garland-Thomson argues that the juxtaposition of Mullins’s disabled body with the discourse of fashion represents an irruptive moment where ‘as legless and beautiful she is an embodied paradox asserting an inherently disruptive potential’. Born without fibulae, Mullins’ parents made the decision to have her legs amputated below the knee when she was a baby and by doing so, to enable mobility through prosthetic limbs. Mullins uses a variety of prosthetic legs depending on the context. For instance, for fashion shoots she wears legs like those of a Barbie doll, not only long and slender, but fixed in a position to wear high heels. As an elite runner and when competing in races, Mullins wears titanium legs that are specially designed for this purpose. These legs, based on cheetah legs, bear little resemblance to natural human legs. As Garland-Thomson argues, the spectacularisation of disability in such contexts subverts normative responses to disability as disabling. This is not to suggest that corporeal variation is fabricated, but rather that the meaning of that variation is contingent upon culturally produced systems of understanding of the self" [bibcite key=karpin2008going]
The fallacy at work here is that Aimee Mullins is Aimee Mullins. She has a spectacular media presence that is probably unparalleled among amputees. You cannot generalize from Aimee Mullins! Of course she walks around with disruptively attractive prosthetic legs and will tell any distruptive story that goes with it and that makes it disruptively interesting. She did play a leopard like creature in Matthew Barney's movie "Cremaster Cycle" and if nothing else, that says it all. How can anyone generalize from Aimee Mullins. Her acts allude to a fantasy world, to fairy tale telling.
That also means that none of that is in any way enabling, most definitely for the overwhelming percentage of amputees. You can study Aimee Mullins and here take on things all day long and fimd that she is witty, funny, unique, peculiar, weird and one can admire her approach to disability. But for everyone else, there, a missing limb is as disabling as it always was. Problems of amputation persist. Nothing, at all, changes. Particularly, a normal normative response to encountering a disabled person with an amputation is not changed a bit. Or to put it the other way around: just because the one or other exceptional ethicist actually manages to produce an exceptionally correct statement regarding prostheses and human enhancement every now and then that does in no way mean that the bulk of what is written also goes down like gospel. Normative aspects regarding beauty remain normative aspects regarding beauty.
Maybe the totally ground-breaking news is that Aimee Mullins or Oscar Pistorius do not the mildest bit influence public normative opinion about disabled people, or, change the social distress related to encountering amputees or other disabled people.
- "The enhancement debate can not succeed without the experiences of people with disability. (..) "Enhancement has to be attractive and for that it has to be 'thinkable', requiring a world view containing a human nature that is non-normative and that allows to change humans per se, so, a disenchanted world is required" [bibcite key=crs2011enhancement]
Exactly that is not the case for so many disabilities. "Enhancement" for the sake of reducing the impact of my disability just has to work, and it should improve any approximation of normality. As an arm amputee, I am confronted with a comprehensively normative environment to start with, that is often at least silently hostile towards a visibly disfigured person such as me, with the effect that social issues and communicative problems to almost 100% base on my non-normal appearance.
So it is only natural that any prosthetic (or other, surgical, maybe) reduction of my disabled arm problem (let us not call that "enhancement") will necessarily be very heavily influenced by exactly that normative environment.
Normative aspects are ranked massively higher in our society than sensible, practical, useful and really cheap, sustainable options as we know very well (link). There currently is no society where an arm amputation, urine incontinence, or frequent migraine attacks are cool and sweet or even acceptable; as disabilities tend to be complex entities, an unnegotiable functional deficit with possible health complications may be combined with an unnegotiable level of disfigurement.
Any wish that I may have in striving towards prosthetic options is mostly if not exclusively driven by a wish that bathes, lives and multiplies within the core of super-normative society that is set out to be designed by and for bimanual people.
I agree that a detached debate about human enhancement in the strict sense may gain from being free of normative restrictions. But for that, disability is not needed. Here, attempts are being made to juxtapose disability and enhancement aspects. The "best" "enhancement" for me, as valued by that society, is the one that emulates a human hand "the best", the "closest" while at the very same time non-disabled people require me to suffer additional de-humanizing discomfort (e.g., link: read that article to go deeper into that paradox) to reach just that degree of normal appearance.
You may compare it to cars: only a functioning car - one that adheres to a normative standard for cars - can be tuned and enhanced in a sensible way. Once your car leaks coolant and you have to stop every 1/2 hour to fill up coolant, adding a nice loud exhaust is really not a worry that you have. So it is remote to me why anyone would discuss tuning cars from perspective of broken cars.
Even when just considering function over form, which I do mostly, a prosthetic hook still helps me to emulate the grasping abilities of two-handed people. To a large degree I want that because of normative aspects - my environment is normed. That aside, I need my prosthetic arm to fix my asymmetry and avoid overuse outside of any norms - that is a technical constraint and to be true, I threw a few overly normative aspects overboard a while back and now cling to my actual core reason to wear my prosthetic: for my own health and well being. That, however, is a wish born out of pain and necessity, not out of detachment from norms or detachment from a happy world. Really, and with that, I am after a very average definition of a happy world - free of pain, for starters - and if that cannot be achieved, I see what options there are and pick the closest I can get. Disability and disfigurement are useless examples to be used in context of human enhancement - not if one knows what one is talking about, for sure. My world is quite disenchanted to some degree at least as is, and if I had my choice, I would not want it to be disenchanted, and to a degree and with concessions, a prosthetic arm (not to be confused with "enhancement") can help with that.
- "Enhancement projects use liberated wishes as template to modify the body. (..) Free wishes require naivety. (..) Mainstream bioethics lets such wishes reside in a private and individual domain, where one can only respect but not discuss them. Individual satisfaction-seeking through body enhancement can only be criticized from an ethical view point once others suffer from it" [bibcite key=crs2011enhancement]
In relation to an arm amputation (you surfed here and this blog is called what again?), wishes are neither free (does "work", "house work", "employer", "garden work", etc. mean something to you? insurances make these decisions exactly how free for me?) or individual (if a hook is the best prosthesis for me too, what exactly does that say about my degree of individuality? if I want insurance to pay, how individual are we?) as these people make believe. Not even remotely. Also, others suffer from my amputated arm no matter what in their own way - they suffer repulsion, insecurity and discomfort when I do, or do not, wear the prosthetic arm.
If anything, ethicists may want to discuss whether there are actually ethic reasons to even force visibly disabled people to minimize the (visual) impact of their disability for the sake of everyone.
- "One cannot understand, what body enhancement is, unless one knows what the experience of disability contains" [bibcite key=crs2011enhancement]
The opposite is true. Enhancement is the exact opposite of disability. Disability is widely non-normal, disabled people get ostracized and are treated as sub humans with absolute industrial proficiency. To even use them as click bait for enhancement debates is yet another twist in "using" disabled people without asking or proper representation.
- "(Disabled) people can enjoy a functional improvement only if cultural, economic or societal conditions allow it" [bibcite key=crs2011enhancement]
As already stated above, disability occurs outside of cultural, economic or societal "conditions". Disability breaches far more fundamental expectations. It describes bodies and realities that differ so vastly from a normal experience - however one describes it - that it becomes clear why for all practical purposes, discussing disabilities in their nature often can be performed regardless of cultural, societal or economic aspects. If one zones in on particular disabilities, then, specific issues may well see relations to economic, societal or cultural conditions.
But in context of enhancement, disability is something else altogether. If one is urine incontinent, absolute improvement in that domain does not a bit depend on what others think about it. If the disability consists in severe migraine attacks, then I know of no culture, where the enjoyment coming out of a functional improvement then is dependent of cultural, economical or societal conditions. If the attacks can go away as part of a functional improvement, then we all can ride into the sunset no questions asked. When I lack a right hand and forearm, there is no culture, economy or society that would not rate me higher (in any way thinkable) had I two intact arms and hands. Of course, the degree of discrimination may be culturally different - but that was not the statement made here. The striking thing about disability is that you cannot negotiate yourself out of it, regardless of economical, societal or cultural conditions.
The normative aspects that you violate by having a visibly disfiguring disability have an extent that you start to worry about the neurological basis of discrimination (see, e.g., a reference to Cloerkes on this website), that is how extensively - by all practical definitions - you are de-humanized.
Disability always contains an absolute aspect with very significant deviations from a normal human function and shape, to an extent where improvements usually are good no matter where, what or even when. Of course - some technical improvements cannot be sustained depending on the infrastructure, costs or environmental conditions; e.g., very humid conditions may not be good for electronic prosthetic components.
- "Norms can (..) discriminate" [bibcite key=crs2011enhancement]
Sure, but it works both ways. With the same projected degree of truth one may state that "if it rains it rains". So, be it. We do not even really know exactly what normal really is - but we easily recognize "not normal" once we see it.
And here comes a statement referred from Jackie Leach Scully:
- "Only thinking through a body that is non-normal opens a perspective on what is really good for a human" [bibcite key=crs2011enhancement]
Not only do I have a non-normal body (whereas my favorite t-shirt slogan "it only looks like that" may forever haunt you), but with that body I see a whole lot of nonsense that I would argue is not good for a human person. Whereas when my body was whole, intact, not amputated, I had a lot of things going on that were really good for me as a human. Really good. We can write some phantastic, idealized feel-good fiction about just how cool it is to be alive with a disability rather than having it worse - but that'd be fiction. Knowing that, we can immediately proceed to ask, who should be fooled by the claim that a non-normal body has general advantages over a normal one in, for example, teaching us about what is good for a human.
Disability and disfigurement are special cases of non-normality and one wants to be extra careful with these. It usually "only looks like that", and really, what disabled people want is not so much different than what non-disabled people want, and what is good for all is good for all.
Usually, it is just about the same.
Non-disabled people are not that bad in expressing good wishes! Nor are amputees. Have a social life, stay healthy and fit, look good, have good discussions (mind you, not just any trash!), chill, rock climb, bike, swim, shoot, drive, ride motorbikes, go fishing - hell, you name it. The Catholic church - who definitely wants the best for us - bans disabled people from their priest applicants, or did so in the past while now mum's the word - and while that certainly restricts them in terms of humanly coolness, that does not per se take away from my hope and my presumption in that they "know" what is "really good" for a person. And we have to accept it from them. If it is good for the Catholic church it should be good for the human enhancement debate.
I may even have seen things you may not even dream about. And not with the eyes of a disabled person, but with the eyes of a person that goes out to see stuff.
Recommendation: tag the human enhancement debate to everyday experiences and sports, not to disability
I strongly suggest to tag the enhancement debate to sports and to everyday experiences. And to avoid tagging it to disabled experiences.
Why a useful sports challenge and / or everyday life works as argumentative environment for discussing human enhancement
- Everyone is somewhat but not vastly different. Human enhancement definitely addresses the average Joe, not the very few vastly variably different individuals. So, human enhancement can learn from all these guys that came up with selling T-shirt sizes XS, S, M, L and XL. People that can reduce shirt size ranges to something useful should have a say in human enhancement debates, not custom suit tailors.
- To get a "fair" chance such as in sports or everyday life also, everyone needs different trainings and boosts but within a relatively oversee-able and narrow range of options. That is typical for the whole amateur sports scene, as example. And it is typical for how we learn to use driving or how to use a text processor to type and print text. Human enhancement will want to develop an industry, and make money, in that same way - and then they are restricted to that type of customers. So why not really keep that focus.
- Doping is treated as illegal in competitive sports, but in everyday races for work performance, we all use all kinds of performance enhancers - starting from beautifiers, coffee or tee or other caffeeine carriers, to tranquilizers, sleeping pills or social enhancers such as alcohol. That is exactly where human enhancement tries to take things from, they want to start there and go further: enhance a bit, enhance a little, stay within overseeable limits at first, then slowly expand.
- Fast is better. Strong is better. Relaxed can be better. Normalized is definitely better. At the end of the day, social and societal membership is restricted to high degrees of culture specific anthropomorphocentrism - that is, one needs to look like people that are - based on their looks - accepted as "human". The Catholic church, as example, does not accept disfigured or disabled people's applications for priest jobs. Human enhancement wants to, by and large, make human people more human, or, better humans. It would be called "inhuman enhancement" or "subhuman enhancement", were it any different.
- Small groups of different sport specific specializations all respect each other. Athletes tend to have a high respect for fairness and "the spirit" of sports. Disability and respect - no, really, you can do better than that. Human enhancement also works within a framework of a lot of respect.
- Athletes ask for a lot. They perform often at a personal and technical as well as health related edge where it is not possible to improve - and yet, improving performance is absolutely defining, essential, of vital importance to them and to their stakeholders. Human enhancement - just as sport equipment manufacturers or car tuning garages - will have strong brand names and a strong identity. That is not the case for disability services; Ossur, Otto Bock or Touchbionics do not represent a positive or strong ideal in any way.
- Athletes have stake holders. Human enhancement will also see stake holders enter the scene. Be prepared.
- Athletes or people providing similar top of the world performances may need more representation than they believe as they are often unable to negotiate their status well enough for their own sake. Human enhancement also will see that type of expectation.
- An athlete that fails usually still is a very well trained person. A human enhancement that does not work still leaves a normal human behind, or at least that is what one would think.
- An everyday person that fails usually can then do something else. Human enhancement is the same as a pair of glasses that works towards improving vision a fair bit but not totally well. But if a disabled person fails, very rapidly one may just be out of order. When my prosthetic arm breaks, for example - end of rope, no bimanual actions.
Why disability does not work for discussing human enhancement
- We are chronic underperformers. Something goes wrong, and we learn to cope and deal with underperforming real fast. Conversely the "enhancement" debate that wants to learn from disabled people tries to go the exact opposite direction: to *not* accept under-performing.
- We are far from enhanced. So far from it. The opposite is true. Bodily disfigured people even risk to be treated as mentally ill because society has no idea. We exist outside the scope of non-disabled people's wildest imaginations. "Human enhancement" tries to improve beyond positive dreams, better and more (not worse and less) is the goal. The implications and the means are totally different from disability. The human enhancement debate does not want to start by jump starting an arm amputee into looking at least half ways human. It is not called "de-dehumanizing works" but "human enhancememt"; people tend to regard, say, arm amputees as sub-human every now and then even if they do not verbally express that, and so may I remind you that the debate also is not called "sub-human enhancement".
- With a disability, we have no own real choice, most of the time. Others think they should decide for us. That is not the same for "human enhancement", where people put themselves very much at the center of any related debate or decision.
- The regulating bodies that restrict options for disabled people sometimes really make no sense. But there is a feeling by bio-ethicists and by insurance representatives that disabled people need a regulating body to stop or ban what others may see as nonsense as judged from their own little incompetence. That is not so for actual "human enhancements" - there, if anything, before anything else, cost and effects / side effects are weighed against each other before any ethicists are called in. Anything that is cheap and performs extremely well - like, coffee or optical glasses - are not even subjected to ethics evaluation and approval. That is definitely not the case in the case of disabled people; there it can be actually the other way around.
- Disabilities are so vastly different from each other one cannot generalize. Functional handicap, disfigurement, restriction, chronic illness also all blur into each other, and differently so for different types of disability. Everday restrictions, prosthetic requirements, manual capability outlook, are considerably different even for below elbow and above elbow amputees. With the "human enhancement" debate, the options are not that extremely widely spread. These options address mostly healthy people and any debate takes it from there.
- With a disability, we do not ask for a lot. Reducing the impact of the handicap is already a big goal. Often what we need is totally possible, from human to human, but made hard to reach artificially or intentionally by others. We suffer from the social aspects a lot. Fixing these is, technically speaking, not asking for a lot. Conversely, human enhancement is asking for a lot: they want to think more and faster, fly, read thoughts, and other impossibilities.
- So many of our hoped or aspired improvements are blocked or obstructed by others, impeded, made artificially hard to reach, priced far too expensively, and not anywhere near good enough in order to make them "essential" or "vital". So many of us lean to live life on a whole range of levels - with less than optimal means, with less than optimal support, with less than optimal prostheses. Already customer "service" of Touchbionics or Ossur, or Otto Bock, exhibited a degree of arrogance that exposes that they must have a view of amputees as sub-human. Human enhancement however will see a fair market for sure, with demand and offer balancing each other before a consumer crowd that is more or less treated as mentally sane.
- Based on these experiences, we often are relatively good negotiators. But that also means that we do not need bioethicists - some of which have no idea what they are talking about once they open up their mouth. We do not need that type of anticipating representation - particularly by people that lack insight. Human enhancement is different - anyone can and is invited to partake; that is a type of new planet that attracts more population, so to speak.
- Unless there is a specific lobby, no one really cares. Disabled people mostly have no stake holders, people that stand up for them to make sure things turn out well. Arm amputees, for example, have absolutely no lobby anywhere on this planet, not in any country is there an actual lobby. In return, however, that does not mean any idiot can get up and think that just by saying something they can act as a representative. One reason also can be that representation of a very highly diverse group can be quite difficult and ultimately not worth it due to lack of common interests and goals. With that, absent lobby due to absent commonalities and overly diversified issues, problems and needs also means that there is nothing common, nothing generalized, for bioethicists to learn - not for anything, and surely not for the human enhancement debate.
- Disabled people have a number of fall back options to employ. Not many but a few. If these fail, too, disabled people can fall extremely deep. They can become chronically ill faster, easier, die earlier, easier, become homeless faster, earlier, easier than non disabled people. You cannot really "learn" from that for the sake of enhancement, as actual enhancement is not seen as any reality there.
Just any juxtaposition of essays does not make a debate, though, and so it pays to use a minimal amount of analysis to check the actual parallels when "reading disability human enhancement" literature.
Much rather, the "human enhancement" debate should stay close to actual athletic sports, and to everyday "enhancements" that are already in place and that help understanding actual improvements of the human condition at the upper end of a positive norm and their aspects.