“With that, visitors of the Cybathlon Experience (TM) can test the role of a disabled person” (können in die Rolle einer behinderten Person schlüpfen) (Oral presentation: “CYBATHLON – bewegt Mensch und Technik”, 5.15pm–6.00pm, Dr. Roland Sigrist, Cybathlon, ETH Zurich, Raum E 1.2) — I was there, one among the 8 people that made the audience of this “sold out” Cybathlon talk; amputees are there for “entertainment” (clearly one of the requirements written on a slide in the presentation) (ist es das, was wir als behinderte Personen spielen? eine Rolle, ja?).
After defining a remarkably strange prosthetic arm race, the makers of the Cybathlon 2020 now start to openly bathe us in their pitch-black cynicism.
Why? Pressing question.
I find that they become somewhat unbearable in their voicing of belittling and denigrating vocabulary that exhibits their disdain of people with a handicap. To them, it appears to me, disability is a circus, a freak show, where a non-handicapped person can hop in and out, and what results from that is advertised as an authentic experience.
To them, disability is just a “role”. Now, that one was new to me, but, admittedly, it is one of the best sneering cynicism I ever heard. After you play the “role” very successfully, you can maybe become Ze Cybathlon King?
No, you can’t.
What are attitudes towards persons with disability?
Attitudes towards persons with disabilities are not an empty aspect, they are not a null-value. They are a core aspect of a basic ethics. They constitute possibly ethical behavior and attitudes. They do not happen unobserved or without reaction – as, also, this post clearly shows. Attitudes are regarded as latent or inferred psychosocial processes that lie dormant within one’ s self unless evoked by specific referents [1].
The “role” of a disabled person? Is what we have a “role”?
“With that, visitors of the Cybathlon Experience (TM) can test the role of a disabled person” (können in die Rolle einer behinderten Person schlüpfen). This was stated at an oral presentation: “CYBATHLON – bewegt Mensch und Technik”, 5.15pm–6.00pm, by Dr. Roland Sigrist, Cybathlon, ETH Zurich, Switzerland, Raum E 1.2).
I was there, one among the ~ eight people that made the audience of this possibly “sold out” Cybathlon talk. Well, who knows: we remember: the Cybathlon 2016 was said to be sold out, too. And here is how that had looked.
So, what do we know.
Dr. Roland Sigrist seems to be of the opinion, that having a disability, is a “role”.
Here is how playing a “role” typically looks like.
Words, sentences, such as this, however, offer a glimpse into an underlying attitude.
The makers of Cybathlon seem to opine this to a degree, where they organize circus events and fun park type events, where people even without other disabilities can perform “role-play”, such as by using a wheelchair for a few minutes, or by wearing a fake prosthetic arm for a few minutes, to achieve meaningful results of any kind. Then, these people even without other disabilities, go back to where they came from, maybe after having tried the role of Wilhelm Tell, or, maybe, King Lear, or, now, of an arm amputee. Those all be roles there. “Roles”.
It is an unfortunate fact that in modern movies, many fictional arm amputee characters are roles that are not adequately filled (an interesting term here, visually) by the actor (really, they are inadequately non-filled). Most actors are too anatomically intact, intactness probably being a continuous dimension along a scale, to authentically play the role of an amputee all by themselves, so CGI typically comes into play. Quite possibly, the Cybathlon makers confuse media and circus – even there, disabled presentors or actors are typically not playing the “role” of a disabled person, but, they “are” the disabled person, just as they were before they started to showcase their proficiency for the Benefit of Mister Kite. Just as Harrison Ford often never actually played a “role” but was basically himself through many movies, disabled people are disabled as a state of their body. Really, a physical disability such as amputation is a serious permanent bodily handicap and disfigurement. Jokes aside: the word “role” to denote the amputee being an amputee is exceptionally denigrating and cynical. If we hear that we immediately go looking for more – and with no surprise we found more expression of extreme cynicism.
Moreover, if anything, it is the prosthetic arm – not the amputee, or non- disabled person – that is cast in a “role”, if ever that is possible – the prosthetic arm then ideally is cast for the “role” of a body part, and then, evaluated how that part was played. All of a sudden, I could not be more serious. Robotics and prosthetic researchers currently try to crack the code that allows them to make prosthetic arm users believe that a prosthetic arm is not just playing the role of a body part, but, “is” a body part. To be, rather than to play a role, has the most serious meta-level existential aspects in this context, were one at all to reflect on the role of “role play” versus “embodiment” and were we, to take this subject a lot further, to dive into the details and ramifications of these questions.
As it is, we are so very far from that type of discourse here. Light years. They still bang rocks together there. Amputees play “roles” and thus, others can play that “role” too.
My guess: decades before these bangs actually spark.
An authentic experience? Is wearing a fake robotic arm for a few minutes an “authentic experience”?
“To create an authentic experience, visitors are asked to hands or use a robotic arm prosthesis. The challenge will be to grab different objects of a puzzle or to complete the wire loop game”. (source: http://www.cybathlon.ethz.ch/road-to-2020/cybathlon-experience.html, 25.10.2018)
The Cybathlon claim that an authentic experience regarding this particular disability can be created at all, is highly controversial generally, and completely wrong in this concise context. The notion as such constitutes a real issue with Cybathlon @school. It is a problematic aspect.
If that was a true statement, then these are true as well:
- Standing in front of an audience and throwing sausages over their heads while screaming to entertain them, and to make them cheer, “authentically recreates the role of a Cybathlon Director”. Clearly, this claim would be ridiculous, as organizing an even halfways sold-out stadium – even though a large chunk of the tickets most likely was sold block-wise to the organizers themselves, because that was also how I got our tickets then – can be a lot of arduous work. And yet, as arm amputee, the complex issues that make for the overall experience are so comprehensively different from wearing a fake prosthetic arm for maybe 15 minutes is but a single snowflake on the tip of the iceberg that defines that predicament. It thus is more than disrespectful to claim that by wearing a faked prosthetic arm for a few minutes, any of the experience that one actually makes, is authentic. If anything can be said from the outset, that experience will be fake.
- Visiting a supermarket refrigerator room for 10 minutes will “create an authentic experience of climbing Mount Everest”. Climbing and descending Mt. Everest to survive the experience is a very costly and very dangerous undertaking, and it is one of the more advanced if not daunting high-risk tasks one can plan and carry out in mountaineering. Similarly to faking an amputee experience as “authentic” by using a fake prosthetic arm, it is entirely fake to claim that standing in a super market’s refrigerator room for 10 minutes is an authentic simulation of a Mt. Everest climb. It is also very cynical.
The degree to which the inherent suffering and ridicule that one is exposed to as amputee are ignored, by having the Cybathlon creators claim that wearing a fake prosthesis for a few minutes creates an “authentic experience”, is astonishing. Another integral part of an authentic experience as a person with amputation is that you get individuals saying very cynical stuff about your disability, possibly with everyone else cheering.
It would be great for such individuals to actually experience that themselves just to see whether they like that part of that “role” so much they would simulate it for their fun park too.
And that is just a tiny facet in the whole wide authentic experience of arm amputation, where you may first have to start by impaling a few nails into that person’s arm and damage some nerves so they permanently hurt, to create an at least halfway authentic experience of actual phantom pain. I mean, just considering the possibility of inflicting actual phantom pain is risky business as actually doing so does have the realistic capacity of sending a so far non-disabled person over the edge, cause them to commit suicide, or otherwise derail completely.
They have not the fuckingest idea what they are talking about when they say that we are playing a “role”. Or that we can be simulated “authentically” by wearing a faked prosthetic arm for a few minutes. This shit cannot even be apologized for, that is how truly fucked up it really is.
Learn what challenges people with (..) prostheses face
“With the so-called bent-knee prosthesis that is fixed at the thigh, visitors without amputations can try to walk with a leg prosthesis and learn what challenges people with leg prostheses face.” (source: http://www.cybathlon.ethz.ch/road-to-2020/cybathlon-experience.html, 25.10.2018)
What challenges to people with leg (or arm) prostheses, that is, people that will lack at least one limb for the rest of their lives, face? That can be learned by using a fake prosthesis for a few minutes?
One considerable challenge that one encounters as amputee are uneducated individuals that claim that wearing a prosthetic limb for a minute is sufficient to “learn what challenges people with (..) prostheses face”. You face uneducated individuals of that kind your whole fucking life, and that is indeed a true challenge. Those may be the same people that think that testing prosthetic limbs also can be done within a few minutes by fake prosthetic socket wearers. Maybe those also are just “roles”.
Are amputees “next steps and material”?
Just as airlines list the details of how to properly seat disabled people under “transport of hazardous goods”, the headline, to inviting amputees or people with other handicaps into school classes for the Cybathlon@school program, is “Vorgehen und Material”. That is as what we are regarded there: after playing “roles”, we are used as “material”.
From (link):
“Vorgehen und Material – Die Module der einzelnen Fächer können unabhängig voneinander durchgeführt werden. Idealerweise haben die Schülerinnen und Schüler aber die Herausforderungen von Menschen mit Behinderungen in einem Sportmodul schon erlebt, bevor sie sich mit einem anderen Modul wie Biologie oder Mathematik beschäftigen. – Interessiert sich eine Lehrperson für ein Modul, stellt der CYBATHLON die Arbeitsblätter zur Verfügung. Materialen (z.B. Prothesen, Rollstühle, EduExos) können gemäss Absprache geliehen werden. Das Material wird vom CYBATHLON an die Schule geliefert. Zusätzlich wird der CYBATHLON den Kontakt mit einem Menschen mit Behinderung durch unseren Partner PluSport herstellen, um sie oder ihn in die Lektionen einzuladen.”
It is only natural that teachers treat all their content, even humans that have disabilities, as material. Just as circus directors cast roles. Thus, there
Who supports such propositions?
I mean, really this type of attitude is channeling paternalizing attitudes of a harshness and new cold distance, that some disabled associations probably started to frown upon already a few decades ago.
So who are the ones that don’t get this?
Funny really, those are the companies and associations that appear to actively support having Dr. Roland Sigrist say that the disability that amputees have is a “role”. And that, for school education, we are “material”. We are prioritized, within the materials section, after wheelchairs and prosthetic limbs.
We can point to prior involvement of Otto Bock as sponsor of a quite controversial art exhibit [link].
Trash culture map localization: Being For The Benefit of Mr Kite!
The amputee circus of Dr. Sigrist that has amputees viewed, portrayed and stated as playing a “role”, a role they can never not play however, clearly an attitude that is for the Benefit of (a) Mister Kite.
This great song by the Beatles describes this rather well.
It could well be the next Cybathlon’s theme song. Maybe the pilots could, again, all wear blue.
[Verse 1]
For the benefit of Mr. Kite
There will be a show tonight on trampoline
The Hendersons will all be there
Late of Pablo Fanque’s Fair, what a scene
Over men and horses hoops and garters
Lastly through a hogshead of real fire!
In his way Mr. K. will challenge the world!
[Verse 2]
The celebrated Mr. K
Performs his feat on Saturday at Bishopsgate
The Hendersons will dance and sing
As Mr. Kite flies through the ring don’t be late
Messrs. K. and H. assure the public
Their production will be second to none
And of course Henry The Horse dances the waltz!
[Verse 3]
The band begins at ten to six
When Mr. K. performs his tricks without a sound
And Mr. H. will demonstrate
Ten somersets he’ll undertake on solid ground
Having been some days in preparation
A splendid time is guaranteed for all
And tonight Mr. Kite is topping the bill
What are ethical issues to teach, that are relevant in this context?
The list of possible ethical problems in the context of teaching is not uninteresting.
- Amputees are often far from obtaining functional prosthetic limbs. Even simple legal aspects such as the CE marking are a big and possibly very controversial issue here. If commercial prosthetic components are not conformant to legal requirements, and for decades, no one cares or notices, what does that tell us about the ethics of providing, the ethics of care, the ethics in engineering ? [https://www.swisswuff.ch/tech/
?p=7749] - Any technical make of a prosthetic arm is not necessarily functional; in fact, some design and control systems are known to be particularly prone to error, malfunction, and serious inherent problems [link]. As one thing, it is to be regarded as established and well known that myoelectric prosthetic arm control do not constitute a good or reliable prosthetic care if one is to use the prosthesis for real work. In fact, current technical hype massively promotes myoelectric arms for unknown reasons. From a user view with a normal healthy load on the prosthetic arm, that cannot possibly be ethical. How is the case made to portray extremely overpriced but not very useful prosthetic technology such as myoelectric arms for unilateral below elbow amputees, as “ethical”, and what twists in logic are required to get there?
- Prosthetic arm use, and phantom pain research, has culminated in a current focus on fMRI (functional magnetic resonance imaging) of the brain. That is also promoted now as avenue to treating phantom pains. Given that entirely different aspects are in fact required to really address phantom pain, how can any research promotion or advertising be actually ethical? [[https://www.swisswuff.ch/tech/
?p=9034] - How is the use of the term “material” for amputees that are used, employed, utilized, exposed or demonstrated for schooling ethical? What ethical standards are necessary to justify this type of terminology? [https://www.swisswuff.ch/tech/
?p=8680] - How is the description of physically disabled people as great examples for “permanently mentally incapacitated” patients ethical? What ethical standards are necessary to justify, to defend and to employ such a view? [https://www.swisswuff.ch/tech/
?p=8812]
What is the goal of this type of denigrating, disdaining and disrespectful behavior towards amputees and disabled people in general?
We can only speculate.
One aspect will be that we are blamed for whatever it is these people that organize the Cybathlon are suffering from. They clearly suffer greatly – you do not go out and propose that amputees “play the role of amputees”, propose that by wearing a fake prosthesis for a few minutes creates an “authentic experience”, propose that we are teaching “material”, listed only after wheelchairs and prosthetic limbs – without a deep sense of urgency. People that go out and bash disabled people for their role may require professional help, if anything, but one thing is clear: they deeply suffer from something we can only speculate about.
A goal may be to clearly establish how is “in power”, who “gets to say”, who “leads”. Power discussions are relevant when users with top level experience – such as amputees – discuss with young unexperienced people such as clearly the Cybathlon organizers, and the question of who gets to lead, who gets to dominate any aspect, arises. This may be a desperate attempt to let amputees know who, in the eyes of these organizers, we are: we are material, we play a “role” for them, we are definitely not humans to be met at eye level.
Thirdly, it looks like a strategic distraction.
- When really, technologists and engineerists such as these inviduals miss the target of building rehabilitative devices, the features that they perform research on, and the features that they develop and test, very clearly are targets used for military research. We thus will have to consider the real possibility that amputee and rehabilitation research in general is abused, by appropriation of funding, to develop military applications. While you won’t get any of the Cybathlon involvists to acknowlegde that, their focus on the actual grip and handling features in the prosthetic arms race as proposed for 2020 leaves no doubt that they have abandoned what a disabled person needs. They are quite likely now turning towards military robot control and manipulation.
- We may need to do a side-by-side comparison of a regular rifle assembly/disassembly guide and the manual grips tested for Cybathlon 2020 though to investigate this more thoroughly. I do not understand why they don’t perform a true military combat type boot camp training test run to begin with. As it helps to be cynicist for such developments if cynicism is not outright endemic in army circles [2], and as the organizers of this event certainly come across as very cynical (see above), the chances are considerable we are looking at the correct answer to the pressing question: why.
Army applications, military research.
Which is why we can safely predict that for the next five years, also, a prosthetic body powered hook will remain the first choice for physically demanding work.
[Bibtex]
@article{f2000measurement,
title={Measurement of attitudes towards persons with disabilities},
author={F. Antonak, Richard and Livneh, Hanoch},
journal={Disability and rehabilitation},
volume={22},
number={5},
pages={211--224},
year={2000},
publisher={Taylor \& Francis}
}[Bibtex]
@article{braithwaite1984cynicism,
title={Cynicism amongst military police personnel in Western Europe},
author={Braithwaite, Lloyd and Sonnad, Subhash R},
journal={Justice Quarterly},
volume={1},
number={3},
pages={413--436},
year={1984},
publisher={Taylor \& Francis}
}
