arm amputation is a really complex problem. building funny and heavy gadget hands no one will want to wear is not the only way to not solve the problem. paying for useless stuff while avoiding to pay for useful stuff also is not the only way to screw things up either. the truth is that all things being interconnected, we are really dealing with a hot mess.
this is an attempt to visualize that hot mess.
- 1 general predicament
- 2 academic research into arm amputation and in particular, into prosthetic hands is usually off topic
- 3 stereotypical reactions
- 4 rare occurrence in society
- 6 bad function of disabled arm
- 7 bad function of prosthesis
- 8 bioethics and their attempts
- 9 manufacturers
- 10 insurances
- 11 prosthetists
- 12 biased regulations
- 13 limitation of available technical and theoretical abilities
- 15 dichotomy of arcane versus science fiction type prostheses in the eyes of the general public
- 17 loneliness
- 18 depression
- 19 prescription drug / pain killer addiction
- 20 pain from overuse, phantom pain, more pain in general
- 21 overuse of other arm and hand
- 22 prosthetic arm: its abandonment
- 23 anger, disappointment
- 24 policies
- 25 public funds for research into prosthetic arms is rarely used sensibly
- 26 public funds for actual prostheses are typically not used too sensibly either
- 27 amputees have no lobby and no public voice
- 29 anyone feels they are entitled to judge, comment and decide
- 30 scientific articles and results
- 31 articles, research: comment, critically appraise, evaluate
- 32 policies: comment, critically appraise, evaluate
- 33 public funding for research: comment, critically appraise, evaluate
- 34 tell people their actual factual role in being "allowed" to comment
- 35 stereotypes, preexisting notions: override and bypass
- 36 arcane prosthetic arm versus science fiction arm: actively avoid and bypass this dichotomy
- 37 publicly point out insider agreement players
- 38 collect own funding and resources for both research and product development
- 39 impose better knowledge, force better knowledge
- 42 build own prosthetic components and parts
- 43 sports, nutrition, habits, exercise, health care
- 44 actively treat overuse wherever possible
- 45 fuck body image
- 46 actively counteract and treat depression
- 47 network across borders
- 48 live deliberately
(work in progress, more content and references to be added)
1 general predicament
the general predicament of loss of the culturally and socially defining right hand is well known and documented. were one to read the quintessential literature, that is.
the scope is wide, the issues are far fetching. social, psychological and overuse issues are predominant.
2 academic research into arm amputation and in particular, into prosthetic hands is usually off topic
from point of view of someone that owns and wears technologies (PAGE), i find actual research that pretends to pertain to the subject to mostly not pertain to the subject.
as researchers conform to academic standards, they will focus on the parts of a prosthetic arm that they can test without dealing with cumbersome, demanding and otherwise difficult amputees (as we know from reading above, the issues are social, psychological and overuse). this restricts their attempts to some stuff that actually no one really needs (as, in fact, our real issues are social, psychological and overuse).
since about 1990, prosthetic hand research is hell bent on furthering a death cycle of ill-fated ideas, amounting to the attempts to "riding a dead horse". their premise is that they want to tinker with robotics under the amputee excuse. however, technical competitions do not use any sensible basis from a rehabilitation or arm amputee viewpoint. much rather, gadgetry that is void of integrative aspects is tested; one of these competitions actually worded this heavy bias into their "preamble": "the rules of the competition should be designed in such way that the design of the novel technology gives the pilot an advantage over a pilot that would theoretically use a comparable but less advanced or conventional assistive technology". this actually is so dumb, that they should be punched with a hard rubber device. if they have to specifically say that, how good is this "novel technology" that it has to be propagated in such a way?
3 stereotypical reactions
society by and large reacts in stereotypical ways when confronted with effective and visible handicap or disfigurement.
not including amputees in biomedical guidelines regarding prosthetic or surgical options to improve grip function ("human enhancement"), and not involving them in prosthetic hand research, exemplifies this truth further.
non-amputee actors that are then post-processed to look like amputees are more examples to prove how society prefers non-amputees even "as amputees".
the general scope of stereo-typically weird reactions is wide and far. furthermore, the concise problems governing individual encounters are relatively well understood and documented - such as in writings by cloerkes or goffman [bibcite key=goffman2009stigma][bibcite key=cloerkes1985].
4 rare occurrence in society
below elbow amputation is a rare occurrence in society.
with that, relatives, friends, neighbours, families, doctors, care givers, employers and work associates usually have no or little idea of what is going on, what is up, and whatnot.
this also may cause many uninvolved people to believe that it is up to them to provide comments, research or other attempts to make themselves important.
in reality amputees just have a bad lobby (if at all) that misses to intervene and stop ill fated attempts of research, advice or comments in their initial moves.
6 bad function of disabled arm
7 bad function of prosthesis
scores, measures, functional estimates and cost estimates only circumscribe but hardly capture the effective functional problem. failure of integrity and low effective function of prostheses is a very real problem in everyday life as heavy constraints narrow the fun that can be had.
8 bioethics and their attempts
the field of bioethics systematically fails amputees as it fails other handicapped people - a fact that is well documented [bibcite key=kuczewski2003]. the result are considerations of people that network within bioethics and health insurance policy makers, that have no real foundation in social law or disabled everyday experience and needs, and that thus cost us massive amounts of extra money [bibcite key=samw2012humanenhancement].
manufacturers for upper limb prosthesis parts face the challenge of technical difficulties, actually moderately to severely difficult to solve problems - from suspension / socket to components -, tiny markets, wide requirements and a clientele that ends up being a bit volatile inasmuch as their overall well being is concerned.
rejection rate of prosthetic arms thus is very high.
in order to survive financially, insurances depend on belief. on the belief that given regular payments of so far undamaged clients, that the insurance one day will pay to remedy their (later) problems. paying for prostheses is a bad prospect for any insurance, though, so they will try to dodge paying for anything in relation to disability. after all, their risk profile of people with disabilities does include "increased suicide risk". and so why buy an expensive prosthesis today if the disabled person could be gone tomorrow?
obviously we expect to encounter some degree of cynicism in conjunction with insurances. particularities and limited vision are to be also expected, empathy and friendly support of actual issues are a rare expection (but they do happen).
technical proficiency and skills can be hard to come by.
current innovations that should be in prosthetists' offices by now include 3D scanning, 3D modeling, 3D printing, and acryl painting.
12 biased regulations
bias of regulations favor lobbyists such as prosthetists or insurances and their bioethical supporters.
amputees are not represented. an anti amputee bias necessarily is a risk.
13 limitation of available technical and theoretical abilities
while an independent an well educated look on the current year will reveal a lot of helpful approaches overall to remedy many aspects of what may or will bug the right below elbow amputee, that information (in its entirety) is hardly ever present in one spot.
so as a consequence, all kinds of affiliated industries have representatives that are not well informed or even clueless.
14 insider agreements, lobbying
among the lobbyists that largely agree on paradigms, we have the following groups: insurances, prosthetic component manufacturers, prosthetists, bioethicists, academic researchers.
this is interesting as this is not intuitive. in reality, my guess is that these interest groups would greatly benefit from pursuing their actual factual goals rather than commiserating in strange liaisons - which really is what they are doing. to no surprise, there is considerable negative fall-out.
15 dichotomy of arcane versus science fiction type prostheses in the eyes of the general public
between star wars and luke skywalker's amazing technical hand transplant as a lucid vision and the pirate's rusty hook as dark nightmare, the general public, aided by prosthetic component manufacturers, general media and academic researchers alike, has not achieved any different perception of upper extremity prosthetics by 2013.
it has to be either unbelievably futuristic or despicably arcane. there is no other, and, there is no in between.
amputation is associated with loneliness.
one is not invited, not asked out, not called, not called back, not mailed and not on the radar of many. one has no interest in inviting others, calling them, calling them back, mailing them and so on.
also, loneliness is an aspect of depression - but not only. it is really also an expression of the handicap being ostracized by society.
by and large, as an amputee, you do have alone time on your hands. lots of it.
this is talking about depression as an illness.
amputees have a fair risk of getting it.
19 prescription drug / pain killer addiction
chronic pain is a daily experience.
drug addiction may be a complication of chronic pain.
20 pain from overuse, phantom pain, more pain in general
overuse should be reduced, avoided, treated, as it can cause disability, and disabling pain. phantom pain is a result of complicated influences, such as neuroma, stump injury, deafferentiation as part of amputation, tissue congestion and other things. one should try to look after it.
21 overuse of other arm and hand
the occurrence of overuse of the remaining or other arm and hand usually is caused by heavy, and/or repetitive, and/or stressful activity - not by closing 1 button, opening 1 marmalade jar, picking up 1 coin, or such.
avoiding overuse is essential. logically, prosthetic arms should support specifically these activities that cause overuse. testing prosthetic arms for other functions (such as applying the southhampton test inventory) thus proves that the tester has not grasped at all what they really should be testing.
22 prosthetic arm: its abandonment
a prosthetic arm and hand - among having clear potential to reduce overuse (only if it is built right, of course) - also (and particularly if it is NOT built right) signifies oppression in a sense that the generally accepted code of social interactions REQUIRE there to be a mitigating part, item, or object, that goes between the socially deviant individual and society as such.
not wearing the prosthetic arm is an act of self preservation, a manifest of independence and pride in its own right. it can cause spine and back or neck problems. it can cause all sorts of problems. but also, living without prosthetic is a lot cheaper, it saves time to not run after prosthetic arm repairs or re-dos.
23 anger, disappointment
overall and all in all, arm amputees are great candidates to experience anger and disappointment along so many scales that it makes one's head buzz.
they more than often lack common sense, understanding and clear thinking.
25 public funds for research into prosthetic arms is rarely used sensibly
real problems are depression, overuse, pain, social issues, societal issues and work ability.
research subjects are hand transplantation, robotic hand gadgets and brain interface control.
real problems of arm amputees and research subjects do not overlap. this is a problem inasmuch as real problems are neither effectively understood nor solved.
26 public funds for actual prostheses are typically not used too sensibly either
problems are that socket stump interfaces are usually hard and extremely uncomfortable, and stock issue parts are smelly, break easily and are very expensive. actually sold prostheses are thus problematic.
swiss disability insurance explicitly does not cover surgical means to implement a basic grip function to the stump.
27 amputees have no lobby and no public voice
for various if not unknown reasons, arm amputees have no lobby.
29 anyone feels they are entitled to judge, comment and decide
conversely, while the actual subject of arm amputation and its wider issues are largely unknown, people typically think they can "see" the problem of an arm amputee when they see that person.
30 scientific articles and results
these tend to be problematic, often, inasmuch as real world issues are concerned.
31 articles, research: comment, critically appraise, evaluate
32 policies: comment, critically appraise, evaluate
33 public funding for research: comment, critically appraise, evaluate
we should probably go and critique a bunch of recent research results and articles, public health policies as well as funding decisions, to show where we are and where we are not in terms of actual science.
34 tell people their actual factual role in being "allowed" to comment
people that have no say-so in commenting on arm amputation issues should be informed, in very clear terms, about that.
35 stereotypes, preexisting notions: override and bypass
it will be our daily duty to - practically and individually - override and bypass stereotypical notions. this is energy consuming at times.
36 arcane prosthetic arm versus science fiction arm: actively avoid and bypass this dichotomy
prostheses, prosthetic interpretations, views and analyses that avoid the stereotypical and extremely dumb scifi-versus-rusty hook dichotomy has to be actively pointed out.
37 publicly point out insider agreement players
people that ride on public money to do their thing whilst conspirating in lobbyist fashion should be publicly pointed out. just so everyone knows.
38 collect own funding and resources for both research and product development
as the public systematically misguides money to support unfounded and ill-fated research and developments, we are called upon to provide other means to promote and fund our goals.
39 impose better knowledge, force better knowledge
it is a fact that actual knowledge about arm amputation can be a bit hard to find.
40 be prepared to deal with manufacturers if needed
we might even consider establishing an office for force certain issues or developments where necessary. but first and foremost, one should be prepared to take manufacturers on. some of them are great business partners.
42 build own prosthetic components and parts
it is essential to keep extending in the direction of open design and shared design.
43 sports, nutrition, habits, exercise, health care
information about the problems and solutions to such problems, that come every day that are with us, should be actively promoted in order to address health issues in a better way.
44 actively treat overuse wherever possible
actively treating overuse contains (a) better practices with the remaining arm and hand, and (b) enforcing a society, research, product development and product sales with after care, that contains prosthetic arms that effectively help reducing overuse.
technically, these prostheses are extremely robust, have a center of gravity towards elbow (not wrist or hand), they sustain hard repetitive bangs, vibrations, work and damage, they survive wrecking usage and have warranties to cover that. to make them attractive to use always, they are extremely comfortable, very reliable and power supply is an absolute non-issue.
as of 2013, that is true only for custom built body powered arms.
45 fuck body image
46 actively counteract and treat depression
there are things that can be done. go do them.
47 network across borders
the internet has changed isolation and loneliness issues for many arm amputeees.
48 live deliberately
with all of what is going on and all that is bad, living, deliberately living your own way, is the way to go. the only way to come out of this.
there is no one that tells you how to live your life. be active. be not active. whatever suits you best.