An upcoming conference seems to hit more precisely than any other contemporary "spectacle" - from body "hacking" (featuring people that quite simply wear stock item devices) over "workshops" where participants are filmed or photographed (but do not get systematic solutions to all aspects that are shown) to "bionic" limb featurettes - the subject at the very core of the current preoccupation of society with disability is not help or support but focus. Support may only be part of making things appear right.
Actual, true, and dedicated improvement or help is not rendered. It is at best shown as sugar coating, thrown in as minimal excuse, offered as pretense, but not made a didactic or technical focus. We now need to delineate real work, real support from sugar coated symbolism that has different goals and purposes.
What is *featured* here - in that conference - is the "spectacle" aspect. What is featured in some odd "bionic" arm workshop is exactly that: they call it "help" - but they invite television to show how good they are and the focus is not on actual function but on "how it looks and appears to the public". They call it "support", but its main feature is a live stream of discussions on media channels all the while the hook remains the best prosthetic ever.
From the website announcing this conference:
"The following timeline is an overview. Specific dates will be posted soon!
- February 1, 2016: Call for Proposals: Proposal submission portal opens
- July 15, 2016: DEADLINE for Abstracts
- September 1, 2016: Conference participants notified of proposal status
- November 1, 2016: Conference registration opens
All conference presenters must register by November 15, 2016.
- April 13-14, 2017: Conference in Los Angeles
Disability is experiencing a new wave of visibility in popular culture from autobiographies and parent memoirs on disability to characters with disabilities in film and television to new inclusive initiatives in the areas of art and dance. The examples are numerous: Dancing with the Stars recently featured a veteran amputee, a major motion picture, Kingsman, featured a disabled woman as a central figure, double amputee and fashion supermodel, Aimee Mullins, continues to grace the pages of popular fashion magazines like Elle, Vogue, and Bazaar, and of course the inclusion of disabled athletes, like South African Olympic swimmer Natalie du Toit and NFL player Derrick Coleman, in amateur and professional sports have brought further attention to the achievements and life experiences of people with disabilities.
This new visibility raises important questions about how disability is depicted in mass media and which disabilities are excluded or rendered invisible in this new cultural landscape. Does our current moment’s heightened awareness of disability produce benefits or disadvantages in other social, political, or economic spheres? The film and television industry’s central role in disability’s changing status makes Los Angeles the ideal location to reflect upon disability as spectacle.
The conference theme encourages scholars and audience members to think critically about disability’s new visibility and invites them to share ideas about the future of disability rights and Disability Studies as this historically marginalized community continues to make advances in mainstream culture. The conference may cover such important topics as:
- Intersection of disability and new media
- Visible versus invisible disability in TV and film
- Disability narrative as literary genre
- Critique of the contemporary ‘freak show’
- Inclusive/exclusive forms of public art
- Role of technology in facilitating visibility and invisibility
- Theorizing new forms of ‘seeing’ disability
- The spectacle of the ‘super crip’
- Examining dynamics of ‘the gaze’ or ‘the stare’ when disability meets dance and performance art"
Intersection of disability and new media
The new media are both (and at once) a means for better asynchronous interaction between and with arm amputees and at the same time, a means for a modern freak show. These two, in an halfway open world, cannot be separated. However, it feels a lot less intrusive if people stare at a website than when they stare at me as a person directly.
But staring, looking, seeing is not sufficient to generate understanding for the condition. Arm amputation is a non-coded non recognized "rare / orphan disease". It is so rare that usually doctors, leave alone people generally, do not understand it and do not know about relevant aspects. Even prosthetic technicians may build dozens of prosthetic legs but only one or two prosthetic arms if they just run a general orthotic and prosthetic practice. Even to them, new media can offer insights into aspects they had no idea about if at all the new media are actually read correctly (and cited correctly ; ).
People see (visually) and think they "see" (as in understanding): they see that an arm amputee lacks arm or part arm, and a hand, or both, and from that infer an understanding of the condition. To them, the amputee "must get an arm back". Even amputees may believe that all they need is to get their arm "back". They may have no idea about the associated aspects. Sure, there is a missing hand, wrist and forearm - but what about respect, pain, individual goals? What about an actual care for what a person (first) and their reduced arm (secondly) are really about? Were you ever asked that *first*, as an amputee?
No. They usually think what they "see" is all there is "to see".
They then call the amputee "disabled", or "amputee" and juxtapose this terminology with calling non-disabled people "healthy"; this is interesting as the opposite of "healthy" is not "disabled" but "ill" or "sick".
And so the wildebeast of "trying to fix amputees" by - say - 3D printing stuff or media hyping non reflected testing procedures non scientifically goes gah gah, while grips per se remain what they are - unresolved. As long as these are temporary glitches, passing phenomena, all is sweet but one has to fear that superficiality is more than just a problem there. And so, there is a real risk that actual prosthetic arm issues are not solved and hooks will be the best device for prosthetic arms also in 2017. Not that understanding a grip, technically, is uninteresting. But let that follow (and not lead) and you will understand how much deeper you can go then.
So it is both the power and a risk for the new media, to convey that there is more to it than meets the eye.
As I prefer to say, "it only looks like that". I have T-shirts with that slogan, too.
You probably do not know just how many levels deep this joke really is; it is by far the most backstabbing comment ever from viewpoint of an arm amputee. As one interpretation, it also applies to people with two hands. That also only looks like that.
Visible versus invisible disability in TV and film
See my reviews of a few movies containing amputee characters. The questions here boil down to two:
- why not employ amputee actors?
- why not use disability as a more common experience than as a voyeuristic feature? why not avoid the usual asinine stereotypes?
Media currently are actually guilty, in each and every sense, of willfully manipulating the public opinion of hooks, probably based on sociological and mythological aspects of our common perceptions, as it is not otherwise to be explained that so many (mostly nondisabled) people today are allowing themselves to be rendered lesser humans by failing the #voightkampff. Also this is just a short pointer to a deeper multi level problem; in essence this is the Catch 22 of prosthetic arms.
If anything they never tested the hooks 1:1 ; )
Critique of the contemporary ‘freak show’
Freak shows are interesting of course, also because we can stare back at those that stare - particularly nowadays. The problem with the "freak show" concept is that it tries to keep arm amputees there.
It does not move them out of there.
This is embodied also by some prosthetic component manufacturers. Not all, luckily, but enough so we notice. I mean, if you (for once) stop beating around aunt Katie's house then we all can agree that non-disabled people that dash towards helping arm amputees statistically tend to have a degree of special motivation or preference that in itself may well exclude empathy, which in itself may easily lead to self collapsing prophecies. Not all, very luckily, but so many that it is hard not to notice.
Many that are drawn towards interfering with the lives of disabled people, including amputees, tend to prefer to rule, dominate, order others around, they have "power issues"; they tend to abhor rejection, critique, independence of others, and to get there the key activity is manipulation and exploiting dependence. They then seem to pick these that often visually seem to fall into their scheme, and amputees may encounter many such (so-called "non-disabled" (as I mentioned above: "it only looks like that")) people. At this moment it is probably good if you can laugh about it a little bit.
So far and so good. And let us not be too moral or negative about it.
Because as such, this can be accepted as fact of life - obviously these people have a preference, and they act it out in that way; there are no laws against it and so it is perfectly legal. But it is very visible! Similarly to an arm amputation, also, let it be known that this type of preference or attitude is impossible to hide. These people breathe it. They exude it. They sweat it. They blink it. They live it.
And that is fine too, or, at least as fine as it gets - because what other choice is there than accepting that that is what they do. As unproductive as it appears to be, in a more overall view.
If people that systematically do not listen that systematically build prosthetic arms / hands / components, will that explain the high rejection rate of prosthetic arms also in the light of unread literature? Obviously, this is now a rhetoric question. It is 2016, almost 2017. And. Prosthetic. Hooks. Are. Still. The. Best. You. Can. Get. I pushed an obsessively close look at grips now. Let us see whether this gets picked up by anyone.
But let us assume that the prosthetic component industry silently or even explicitly agrees on keeping arm amputees in a "freak show circus". The "freak show strategy" essentially pushes blue collar workers, by actively avoiding to develop really useful prosthetic arms for true bimanual hard work, to a non-occupation realm, where all they can do is sit around; it essentially keeps white collar workers and leisure class aficionados from moving on by expecting them to wear "bionic" arms (even though these are more often a disability by themselves), and by making price schemes so extreme that a luxury class ownership is established there. And while this seems to fire up tiny individual fireworks of individual blessings on very close up focused view, seen overall we are confronted with the "freak show". When I wear my hook, or no prosthetic arm, life is as it is but when I wear my iLimb then colleagues react in such a way that the "freak show" aspect cannot be denied. However, insurances do not pay for these iLimbs ever so readily, and so amputees start to sign up for soldier-type representation contracts, directly with manufacturers. And there is nothing inherently "inspirational" about arm amputees that then sign up for soldier-type representation contracts, that basically pose a particular arm amputee as "ambassador" for a particular hard-to-sell difficult-to-use product; far more, this is an expression of desperation, of a unique aspect of the contemporary "freak show" that makes amputees "jump higher" for devices they should be able to be awarded on a purely and strictly functional basis after being sold for a sensible street price without too much overhead marketing costs. This process is extremely understandable from a practical viewpoint - if these "bionic" hand suckers cost an arm and a leg and if one wants one, desperately, and if one can arrange it, one just goes and becomes a billboard figure for the company and acts out what the device "can do". As soon as these must-have "bionic" gadgets are there, and as long as they are overpriced, underperforming and not or only to a small part covered by insurances, there will be bypassing maneuvers to lay hand(s) on these. And yet, there is no such thing as a free lunch. And so the bottomline is: that is exactly how one organizes a cost effective freak show. These "bionic" prosthetic hand devices hide nothing, they way they are handled also by the media hides nothing. They pull it all into the wide open, every minute of it. And all the while, it is cool for the extroverts, it provides entertainment for all that are inclined that way, and given these premises this "freak show circus" seems to occupy the participants in happy ways, it can be seen as relatively harmless, cool, and there also seems at least a superficial air of naivity that surrounds it all.
The process of having a publicly organized freak show circus, that attracts arm amputees that are willing to jump higher for what they see as "free lunch", then has roboticists that develop heavy robot hands that are geared towards military and space applications. That is a totally different circus, but if anything, they then exploit that freak show circus for their own purposes. All of a sudden, these researchers get funded "under the amputee excuse" (also causing no research money for actually improving prosthetic arms for amputees to be left) and make that plausible by including a few arm amputees into their process; then the arm amputee will test drive heavy devices and their difficult control paradigms, and wonder why these robotic hands never make it to the prosthetic arm market. This is because now, this is a military and space exploration thing and there is absolutely nothing is harmless, cool or naive about the whole thing any more.
The current obsession with "bionic" arms is that they introduce a socially acceptable way to turn the arm amputation into an accepted "party gag", a "dinner table conversation" that then can focus and zone in on the "freak show aspect" without humiliating non-disabled people by actually offering raw performance; after all, you can not go home and happily tell anyone "the amputee outperformed me in ..."; instead you can now say "the arm amputee had a weird prosthetic arm and it was not functional but, hey, entertaining". That must be why the "bionic" hand manufacturers shy away from making hard working hands for good prices and why they reject each and every single constructive complaint.
But prosthetic hands as such are neither a goal, nor a solution. Every single comment where someone comments "an amputee to be an inspiration" usually refers to an act that is stared at, that is watched voyeuristically, as I never, ever, a single moment, experienced that one of these commenters in any way changed their ways, or actually got inspired, if anything they kept staring.
If you ever get the chance to talk to representatives of such attitudes - i.e., people that work towards actually keeping arm amputees disenfranchised, helpless, dependent, stuck with prosthetic shit options, looked down upon, even pushed to a "museum" (in fact the people that organized the "Cybathlon 2016" event had two idiots ask me whether I wanted to show my prosthetic hook as part of their "outdated prostheses" exhibition, after which I decided to post an A0-sized rebuttal there) - then you will find out that they do not know WHY they are doing these things. They are wired that way. They feel like having to control others. It is a power thing and an amputee preference thing. They treat amputees as sub-humans because it is the way they are, and because no one educated them any differently.
The only hope as an amputee is to drop the tag, drop the label, and "become" someone that is tagged differently or less or maybe not at all, as hard as may be then.
Role of technology in facilitating visibility and invisibility
The essential core property of prosthetic arms, that technology fails to build well ever so entirely, is "invisibility". Many other aspects of required properties are at least approximated these days; but "invisibility of the handicap" sure is not one of them.
It is the most relevant bit to many of us for so much of the time.
Missing part of an arm has many non-disabled people reduce me; I can compare this to a "before" and I can tell you that the degree of repulsion and rejection is absolutely massive.
So the need for "invisibility" is a real one.
With even the "best" "maximally invisible" prosthetic arm (the "cosmetic" arm, that is), another guy at the gas station will walk in, and then tap my shoulder while queuing up to pay just seconds later, congratulating me saying "it is really not easy to see that you are wearing a prosthetic arm". Fail.
I defined an "appearance test" that is based on my real life experience with my prosthetic arms.
The interesting thing is that for this to be realized, robotic researchers cannot lie about their motives any more. No robotic researcher in a sane mind will build military or space exploration robot hands, call it "amputee rehabilitation program" and then actually make these hands appear natural. Absolutely no robotic military or space application needs naturally moving hands. This is also, why this aspect is so intriguing. So much prosthetic arm / hand research is something else - "it only looks like that".
Having a visible disability reduces how others see me as "competent". But competence can be communicated in other ways; however, solutions to the communicative gap may want to address these needs specifically and with a very targeted and intended approach.
Ultimately, this may turn out to be a problem that technology is entirely unable to solve. Then, solutions (logically) will be not "technical" but different: design based; behavior based; attitude based; dialog based.
The spectacle of the ‘super crip’
The underlying hope of everyone there is probably that the super crip "overcomes" something. We also do not have other "super" humans! There are no super researchers, super prosthetic arm builders, super anything - forget it.
There is nothing to "overcome"... reflect on that until you see that too. The arm does not grow back. So, that is that. Attempts to "overcome" preemptively failed even way before they started. The "super crip" is a myth, just as dragons or "bionic" arms are. The key answer is trying to find balance.
If anything, the "super crip" is a mythological role attributed to a few amputees that dance in the "freak show circus". But that is similar to standard roles available for the classical Punch And Judy plays - the caspar, the gretchen, the robber, the crocodile and the police officer have their standard attributes there. But they also do not "exist".
Examining dynamics of ‘the gaze’ or ‘the stare’ when disability meets dance and performance art
I do not know about performance art directly. But I tried a number of ballroom dance classes.
The disabled arm with or without the prosthetic there is a real no go. It totally does not work. It irritates unassuming (non-disabled) dance partners to a degree that ranges between extreme and catastrophic.
The reason is that dancing is not manual or bimanual "work" that "needs to be done". Were that the problem, we'd be discussing mere technicalities. But to most people (and with ballroom dancing as a man, I probably mean women), ballroom dancing has a function of being "representative of a particular dynamic anthropomorphic form". You cannot be less anthropomorphic, particularly dynamically, if being overly, more, exaggeratedly anthropomorphic seems to be the very essence of dancing.
Even for people that work hard jobs, dancing is an expression of breaking out into symbol space, breaking out into a dimension that is "pure motion"; and a prosthetic arm is both symbolically as well as practically, realistically, a metal or rubber road block for the fluidity and elegance of dancing.