Eksobionics, a company dedicated to the augmentation of the human body, recently developed Ekso—a “bionic exoskeleton that allows wheelchair users to stand and walk.” In this post, I pose a question to which I honestly do not have a definitive answer: Does this development represent human progress or does it further perpetuate the subordination of physically impaired bodies?
I begin with a brief background on the company and a description of the product. I then present arguments for both progress and ableism. Finally, I question —but ultimately defend—the validity of this dichotomy.
Eksobionics was founded in 2005 under the name Berkeley Exoworks in partnership with the Human Engineering Laboratory at UC Berkeley. They began by developing exoskeletons that allow humans to carry more weight and move more efficiently on diverse terrains. In true cyborg-development style, the company received funding in 2008 from the department of defense to develop and eventually distribute their technology for military field use. Today, under the name Eksobionics, the company has developed and is prepared to distribute Ekso (the bionic exoskeleton that allows wheelchair users to stand and walk) to rehabilitation facilities. By 2014, they hope to make it available for everyday use.
The argument that Ekso represents human progress is quite straight forward and easy to make. The physically impaired human body is augmented by this device, given the ability to stand and walk where before this ability was not granted. Not only does this give wheelchair users access to spaces previously unavailable, but can have positive health benefits, as the wheelchair user can exercise hir leg muscles, improve breathing capacity, and relieve the skin that becomes susceptible to pressure sores from extended periods of sitting. Moreover, and perhaps most importantly, many (though certainly not all) people with spinal cord injuries do hope to walk again. This technology aids in the accomplishment of this goal.
Less straightforward is the argument that Ekso represents a step backwards, a move towards the further denigration of physically impaired bodies. Here we have a product made to improve the lives of those with spinal cord injuries, and yet, it implies that walking, rather than wheeling, is necessarily the preferable state of mobility. I must point out here that a body in a wheelchair is already an augmented body. The technology of the chair, whether manual or electric, grants the mobility that is organically restricted. A practiced wheelchair user can indeed often move more quickly than a person relying on leg muscles alone. When in a wheelchair facilitating space, a wheeler can maneuver quite easily, accomplishing necessary tasks and acting independently. The problem, of course, is that many places and spaces do not facilitate such free use of a wheelchair. I wrote about this more extensively in an earlier post. With this in mind, I will now elaborate on is the difference between disability and physical impairment. It is in this difference, I argue, that we see the ableism that is built into the Ekso.
According to the social model of disability (as opposed to the medical model), an impairment is simply a physical condition. The legs are immobile. The eyes do not see. The ears do not hear. These conditions are inherently value neutral. They do not, in any essential way, hinder the extent to which a person can engage as an active member of society. These impairments become disabling, however, when experienced within an environment that fails to accommodate the spectrum of physical and mental states. Sight-only crosswalks are disabling for those with vision impairments. Public speeches without sign-language interpreters are disabling for those with hearing impairments. Buildings without ramps and/or elevators are disabling to those with mobility impairments. The technology of the Ekso assumes able-bodied advantage, and so works to fit the impaired body into an ableist environment. The impaired body is, by implication, devalued.
Having laid out both sides of the argument, I must now take a step back and question the validity of the dichotomy itself. Indeed, I have laid out a theoretically false dichotomy between ableism and progress. At an academic level, this dichotomy, as with most dichotomies, is problematic. It incorrectly assumes a zero sum game where a device that aids in walking necessarily denigrates the wheeling body. Empirically, however, this dichotomy is not false. The development and distribution of technologies require resources, including time, money, space, and innovative minds. These resources—especially money—are limited, and choices must be made. Will we use these resources help wheelchair users walk, or to make inaccessible buildings more accessible? Will we use these resources to help blind people see, or to improve web-reading devices? Will we use these resources to develop medications for ADHD, or to develop curriculums and work spaces that accommodate those with high energy and quick moving thought patterns? In a perfect world, these “or” questions would be nonsensical. In the real world, however, the allocation of resources into one side means a decrease in resources for the other. So do we want to use our limited resources to improve ability at the individual level, while perpetuating an ableist environment, or create a more accommodating environment, where impairments are no longer disabling?
An issue not to be overlooked here is one of access. Who can afford the treatment and devices that improve individual mobility? If their proliferation perpetuates a disabling environment, then what is to come of those (likely the vast majority) who cannot afford these specialty devices? The result could be potentially devastating.
On the other hand, and to disclose fully, as a woman who terribly misses hiking in the Virginia mountains, is rejuvenated by a brisk walk, and basks in the sweat-pouring experience of a long run in the mid-summer Texas heat, were I to acquire a serious spinal cord injury, I would find hope in a device like the Ekso. But then again, I am a product of an ableist society.
Note: Special thanks to Huong Le for bringing the Ekso to my attention
Comments 22
Oliver Milne — January 20, 2012
The worry I have about the sort of argument you put forward here is that it implies that there should be a kind of levelling-down of social activities that require physical capabilities not available to some citizens. I'm not arguing against adding ramps to buildings if that's the most efficient way to make sure everyone can use them, for example; but what would it do to the Virginia mountains if they were made wheelchair-friendly? The problem with making impairments less disabling in some social situations, rather than eliminating the impairment, is that you run the risk of eliminating the advantages, to individuals and to society, of people having the capacities not present in the impaired - such as being able to go walking in mountains not covered in ramps. (That's a very crude example, but you get my point. If, say, we could 'cure' all deafness, efficiency savings could be made on induction loop systems and TV sign-language interpreters.)
Let's look forward thirty or forty years. In one scenario, we devote the lion's share of social resources to 'progress', including providing its results to people who could not otherwise afford them. In this scenario, the Ekso's successors are strong, fast, responsive and convenient enough that a spinal cord injury may be thought of as a condition that (for the subsidised price of an Ekso Mark Whatever) produces numbness of the lower body. In the other scenario, we devote the lions share of social resources to reducing society's ableism - making all buildings accessible, educating people out of their unconscious biases, or what have you. The first scenario is clearly preferable both from the perspective of the physically impaired at that time (who can go walking in the Virginia mountains) and from the perspective of the 'abled' (since for example public buildings may be better optimised to the needs of people who can walk around).
The losers in the first scenario would be the physically impaired between now and such time as these technologies become widely available. They would, let's assume, suffer indignity as a result of our not dedicating society's resources to removing the social aspect of their disability. But to treat the indignity of a couple of generations as a defeating argument against providing mobility and with it dignity to those who would otherwise suffer the same impairment is to privilege the present at the expense of an indefinite number of future generations of people with spinal cord injuries. For the greater good of people who suffer from the same problem as them, if these are the only alternatives, they should suck it up, harsh though that may be.
(The case of ADHD is different because a future in which we accommodate instead of eliminating that physiological difference could plausibly emerge better for all concerned than the alternative, perhaps by producing citizens with a wider variety of complimentary talents, or saving them the side-effects and taxpayers the cost of medication. This also applies in the scenario of enhancements to 'normal' people.)
You suggest that your love of activities involving moving your legs is a product of society being ableist. But society would be poorer if the activities you mention were devalued. Suppose we had a society in which the only activities held to be worthwhile were those in which everybody could participate, regardless of impairment. That would eliminate music, the cinema, gymnastics, athletics, cookery (better not forget those who can't smell or taste!) - and, if we include all those who are cognitively impaired, it would eliminate this conversation too. Maybe you didn't mean that, and I'm making too much of a throwaway sentence. But it's important to recognise that universality of access to social activities is not always relevant to their value, even if the activities have a bearing on how fully a person can participate in society.
jennydavis — January 20, 2012
Oliver,
Thank you for this long and thoughtful comment. You do a nice job of elaborating on the "progress" side of the argument. I agree that this is a complex issue, and that abandoning development of all individual mobility improvement devices is not a practical, realistic, or desirable option.
At the same time, it is important for us to investigate the value systems inherent in technological developments. This was my purpose in the above post. We DO live in an ableist society. For better or for worse, we live in a world that privileges walking over wheeling, speaking over signing, etc. My final segment, in which I discuss activities that involve moving my legs, was meant to locate myself within the argument. I am indeed part of an ableist society. This does not make my enjoyment of these activities bad, nor does it make the activities themselves bad. It simply means that I have personal biases that in fact conflict with much of the argument that I make in the rest of the post.
We have to be careful about assuming (and so maintaining) an ability hierarchy, where the able-bodied are necessarily "better" than those with physical impairments. Your argument, though well stated, rests upon this hierarchical assumption. Ridding oneself of an impairment would, according to your argument, necessarily be a positive thing. However, many people in the disability community (if you can call it that) do not want to rid themselves of their impairments. In fact, they find it offensive that the medical community and society at large views them as "broken." They do not need to be "fixed." This is perhaps most clearly seen in the resistance from the Deaf community to Cochlear implants. Deafness is part of them. They experience the world in a different way, and the cochlear implant disrupts this experience (and also have a host of other problems).
This is a complex issue, which is why I framed the post as a question rather than an assertion. Thank you for continuing the discussion.
jennydavis — January 21, 2012
I don't think any of us are in a position to make decisions about what is right or best for other adults. We are also not in a position to make decisions about what others can or should do with their bodies. My problem with your line of reasoning is exemplified in the passage where you say:
"if someone you knew decided they didn’t want to be able to walk any more, and pointed a nailgun at the base of their spine, you would stop them even if their aberrant desire had become a central part of their identity. They would simply be wrong about what was good for them."
First, there is a large community of people with body integrity identity disorder (BIID). They believe that they were born in incorrectly-abled bodies. They suffer deeply because of this mind/body schism.Many of them would like a legal medical option for ability-reassignment surgery. I have been studying and learning from/about this community for a few years now, and have to say, that while I would not encourage anybody to shoot themselves in the foot, I would (and do) advocate for a legal and safe route to impairment acquisition. You can learn more about this community at: http://transabled.org/ or http://biid-info.org/Main_Page
Second, your biases are clear in the language that you choose. You refer to the desire for impairment as "aberrant." While this desire may be aberrant to you, it may be the only way for some people to find peace. The self is made up of both the body and the mind, we seek an alignment of these, and the former is more malleable than the latter.
Third, this language implies that not only are those who want to keep or obtain impairments are aberrant, but that disabled bodies themselves are aberrant.
In response to the "better"/"better off" distinction, I think that this distinction is heavily imbued with your own assumptions about what "better off" means. You assume that more physical options are necessarily better off. The bloggers on Transabled.org (the BIID site linked above) think that they would be better off without a choice. To not have a choice, for them, is the route to mental and emotional well-being. While they recognize the physical limitations, they feel that they are "better off" not being chronically depressed, anxious, and full of shame. Similarly, those who are happy to maintain their physical impairments do so because they, based on their experiences, feel that they are overall better off than if they were able-bodied.
Finally, I want to state explicitly that disabled bodies are not public property. These are the bodies of autonomous human beings. People with disabilities, just as those with able-bodies, have the right (and experiential knowledge) to decide what is best for themselves. In turn, nobody else has the right (or experiential knowledge) to tell them that they are wrong.
I understand where you are coming from, as you obviously cherish your able body. I too, as mentioned at the end of my original post, cherish my able body. I also recognize, however, that it is impossible (and dangerous) to use my own experiences and feelings to make decisions for others. The view will inherently be skewed.
Oliver Milne — January 22, 2012
Jenny,
Thankyou for your powerful and interesting response. I looked through the websites you linked with a mixture of fascination and horror (which I say for the sake of full disclosure). The contributors are clearly intelligent thoughtful, and decent people who are suffering a great deal from the mismatch of their mental and physical identities, and after reading what they have to say I agree with your suggestion that they ought to have a safe, legal means of resolving that mismatch. As you say, here and now the only way to do that is to provide them with the impairments they feel they need. It is, I gather, much better to be happy and disabled than tormented, depressed and abled.
However, this does not change the fact that it would have been better for them, all else being equal, had they neither suffered from BIID nor become impaired, and this is the case whatever their preferences. I cannot agree with you that people's considered choices for themselves are beyond question - although it is very true that the experiential basis for anyone else to make a choice for them is much slimmer than their own - for two reasons.
The first is that a person's preferences may be irreconcilably at war with one another. Suppose you yourself suffered from BIID, wishing to be deaf, and yet you deeply enjoyed music. These clashing preferences could not give rise to as good an outcome for you, from your perspective, as you might obtain were one or other of them different. In the case of BIID sufferers it seems that for the moment there's nothing to be done about this, but if it were to emerge that BIID could be cured then that would, from the perspective of the sufferer after the cure, and assuming that the treatment regrounded their identity as a non-BIID sufferer rather than leaving them unsure of who they really were, lead to a better outcome than any in which they retained their BIID.
The second reason is that power and freedom (in the sense of 'the ability to act as you like, both spontaneously and over extended projects') have an independent value. It is better for a person to have power and freedom than not, in the same way that it is better for a person to be happy than not, to be intelligent than not, and to know the truth than to be deceived - not from their individual perspective on what's good for them (privileged though we may allow that to be) but because the state of freedom (like the state of happiness, the state of intelligence and the state of clear-sightedness, to pick some examples) is one which is fitting for a person. In some cases, like that of BIID, these ideals might conflict - in this case, the ideal of happiness and that of power to act. This raises the problem of how to balance those two out, given that they cannot as things stand be reconciled. In our society, which though ableist to a degree still offers most of its goods to the physically impaired (employment, friendship, social acceptance, recreation, etc), it becomes plausible that the freedom they would lose would be more than outweighed by the happiness they would gain. However, it would be better if their minds and bodies were aligned such that they could be both happy and free.
This also applies to the pride or other state of mind (which I do not pretend to have the measure of - you're right to imply that we cannot know what it is like to be another person) with which some people with disabilities refuse to undo their impairment when that is possible. The criticism in both cases is that the inclination is perverse, the difference being that the disabled people in question may be more able to change their position and thereby rectify the situation. This might have damaging knock-on effect in that without their voices - motivated by that same state of mind - the plight of the disabled in our society might worsen, with abuses and corrosive instances of ableism going unchallenged. Moreover, as I'm sure you would agree, the benefits to their character and their social experience of such a state of mind in conjunction with their impairment (perhaps it renders them stronger-willed, more stoic, better able to strike up conversations with strangers, or what have you) might also in practice outweigh the problematic nature of their disability for their flourishing. Friedrich Nietzsche, for example, certainly believed (plausibly) that he benefited from suffering through chronic illness. However, were they able to keep the benefits, to them and to society, of that state of mind whilst losing the impairment, that would be the best outcome of all.
If these are ideals for what people should be, though, you raise the terribly important question of the status those who do not fulfil them to the degree the majority of members of our society do. Can this view be reconciled with the respect and dignity they deserve as autonomous individuals? Given that BIID and disabled bodies are in this way 'aberrant' aspects of individuals, deviating from the ideal of what people ought to be, what is the attitude the view prescribes firstly for the individuals possessing these traits, and secondly for those who don't?
The attitudes which would be problematic if they arose here include shame, contempt, exclusion and revulsion, among others. None of these attitudes are prescribed by this system of values because they are none of them conducive to producing flourishing human beings. Someone who is ashamed of their very existence is not happy, and liable to be deeply inhibited by their shame (preventing their being free). Likewise to exclude and discriminate against a person, even without feeling any contempt or other aversion for them, is to violate the ideal of the individual as end-in-themselves fleshed out by the ideals of how a person should be which I outlined above: a person is neither an instrument nor a mere vessel for utility, but has these various modes of flourishing which gain their value as means to elevate the person, who is the end. Hence one can endorse this view of how people should be, as I do, without in any way denigrating those who happen to have impairments, psychological or physical. Is it an insult to somebody to say 'It's a shame you broke your leg'? How about 'It's a shame you had BIID and had to resolve it by breaking your leg/spine?'
Where it may perhaps be ambiguous is that the best means to the flourishing of an individual who has an impairment may be for them to reject this conception. That's a situation in which I would feel very uncomfortable either espousing or rejecting it.
Thankyou for continuing this debate, and apologies for the length of my comment - I look forward to your reply!
Jenny Davis — January 22, 2012
Oliver,
Don't apologize for the length of your comment!! I appreciate the time and thought you put into this. I also appreciate that you took the time to go to the sites, and you seem to have seriously considered what this community has to say.
In line with your argument, many bloggers on transabled.org do indeed express the desire to be rid of BIID entirely, or to never have had it. Other members of the community, however, feel that this is so deeply a part of them, that to lose BIID would be to lose part of the self. This is similar (though not identical) to Nietzshe, who felt that he was stronger and deeper for his suffering. Still others feel that BIID is not a medical condition or illness, and that they do not "suffer" from it. Instead, they view it as a value-neutral variant of the human condition. This variant leads them to present in a wheelchair, with leg braces, opaque contacts etc.
Similarly, within the disability community, there are those who decry their physical impairments, those who embrace them, those who feel that they are an integral part of the self, and those who feel that they are a hinderance to the flourishing of the self.
The point is that views on disability, even within subgroups of the disability community, vary extraordinarily. While some desire the ability to walk, see, or hear, others simply do not. Whatever their desires, however, these people have to function on a day-to-day basis, and it is inexcusable that they are unable to do so independently. If we believe in equal rights, then we must believe (and so facilitate) equal access. This, to me, should be the first priority.
With that said, ability improvement technologies do hold an important place. Just as those with BIID feel intense emotional pain over a mind/body schism, so too do some people with disabilities (especially those who were previously able-bodied). They view themselves as someone who can walk, hear, see etc. It is painful for them to be unable to do so. It is therefore important that we allocate resources here as well. In doing so, however, we must acknowledge the value judgments implied in these technologies.
Thanks again for your thoughtful contributions to this piece.
Kyle Munkittrick — January 23, 2012
Jenny,
I appreciate your article and the thought you've put into the argument here with Oliver. I'm concerned that your own biases regarding disability have caused you to falsely equate being a member of the Deaf community with identifying with one's mobility difference. Further, the argument that "equality is our first priority" misses the fact that our environment is itself a piece of technology and a mechanism for "treating" a disability.
I would be most interested in your response to my post http://www.popbioethics.com/2012/01/are-exoskeletons-ableist/
which expands on this idea.
It may shed some further light on the discussion Oliver and yourself are having.
Caitlin Kelley — February 3, 2012
Wow. This was a fun read. I am truely greatful for such amicalbe discussion and the space to do such in.
Jenny, I appreciate your critical reflections of technological "advances" for humans and your courage to be devil's advocate while we consider and question human progression. Because this is such a complex and complicated arena for opinion (and thankfully so!), I feel your proposition has been undermined. One of which at it's core is philosophically asking, "what is human impairment?" and then sociologically asking how have we been taught to answer the former. I appreciate your break down of impairment and disability. It's like considering the two with the rule: "correlation is not causation." A person is not disabled because they are impaired. Although the correlation can be made, there are other factors at play. In our human society we use social structures for interaction, and we use interactions with others to define ourselves. Therefore we learn through experience our understanding of human qualities, such as impairment--often acknowledging the ability and inability of others, in comparison, and within the boundaries of our constructed social settings. The point is that our social structures hold the capacity to shape our understanding of people. If our social settings were structured differently it is safe to believe "impairment" would therefore be judged, experienced, and understood differently. Perhaps even shifting the attribution of "disability" away from people and onto the structures that are more truthfully falling short of their potential. That being said, I agree that priority should be given to architectural technologies. In doing so human advancement is a revolution in harmonizing diversity; instead of a revolution in harmonizing comformity.
In my opinion--obviously based in sociological analysis--I say the answer to your question is that we ARE perpetuating a denigrated understanding of human impairment if priority is placed on inventions that only satisfy a portion of the human spectrum. I think the human race has always had an inclination towards upgrading inventiveness when it comes to prioritizing. It's exciting! Exploration! I certainly find it to be an admirable task, but I think part of the question at hand is if we are exploring attentively enough, and in the appropriate order. Are we concentrating too much on progress before we fully explore the inventions in motion? Inventions like social structures and the market economy, and exploring how to make both universally accessible. I love this post, I think it is vital to ask consideration of these consequences, and if, in our attempt to perfect society, we are actually fueling it's imperfections by litterally getting too far ahead of ourselves.
Are Exoskeletons “Ableist?” « So. Ill. Activist — February 20, 2012
[...] I am amazed I didn’t discover sooner, given its sister site is Sociological Images) Jenny Davis attempts to figure out if the assistive devices built by Ekso Bionics are “ableist” or if they represent [...]
Ahmie Yeung — February 25, 2012
Hello, my husband pointed me to the popbioethics.com post (which doesn't appear to allow commenting) and after reading that article I read yours (and looked at the "testimonials" linked on the bottom of the popbioethics article).
By way of introduction, I am a sociologist-in-training (MA should be finished in December, planning to go on for a PhD in Social Psychology, focusing on developmental issues). I am also a disabled mother of three able-bodied children. I have hypermobility syndrome ("double jointed" but with degenerating joint issues) with secondary chronic myofascial pain (very similar to fibromyalgia, which was my first diagnosis) and chronic fatigue immuno-deficiency syndrome, as well as moderate dyslexia (which comes along with central auditory processing disorder/disfunction - and both are related to how much physical pain I am in at any given moment, or what medications I've taken). One of my mother's best friends from high school is Deaf, which resulted in my learning American Sign Language starting at age 4 (I'm about as fluent as anyone who doesn't use any language on a frequent basis is, my husband is Chinese-American, raised in a Cantonese speaking household, and my ASL skills with strangers are better than his Cantonese skills with strangers, but I'd probably have difficulty if I were to try to pass an interpreter exam without getting in a few months of daily practice again first). I am 35 years old, and I've been in some level of pain (ranging from mild to excruciating, averaging around feeling like my body is covered in large bruises that are constantly being bumped... I call it "physical tinnitus", it's like my body has a constant ringing in its ears that is at times distracting or annoying, always there, but I can often ignore it with proper adaptions to my environment). I am also an extreme extrovert, and rarely come across people with as much sustained creativity as I have (in addition to several research projects, I am also currently working on a novel, have one novel finished in 1st draft form, and about 10 more peculating in my brain, plus I write poetry, design products for infant care, make time for my children and other people I care about for direct physical interaction, etc etc etc).
So... I'm a very worthy person, and my physical limitations have never decreased my awareness of my positive attributes. It has lead others to underestimate me, which I sometimes actually have quite a bit of fun with - kind of like when a cat finds a live mouse. Sometimes I play with the mouse-human for a bit before biting them off, sometimes I just go straight to the bite ;) It's rare that any mouse-human who has underestimated my intellect because of other demographic features about me (not just my disability, of course, but my gender, my SES/background, and having chosen to not be "gainfully employed" through the first 8 years of motherhood are all common sources of their misguided opinions) escapes entirely unscathed. Usually they just aren't interesting enough to me for the expenditure of energy ;)
Now, about my perspective, as a sociologically minded individual who happens to be disabled, and to whom such a device might some day be marketed...
Jenny and Oliver and Kyle, you're all missing several points with this device.
First off, it does not eliminate the need for ramps and elevators. Notice that the user of this device is still required to use two forearm crutches (visible on the "testimonials" page where they show actual people with spinal cord injuries using the device). Being a double-cane user myself (forearm crutches bruise my arms too much, I've been trying to get some engineering friends to help design a better one for me but it's low on MY priority list right now as the canes and my mobility scooter get me around just fine), you aren't supposed to use those on stairs. Any OT worth their salt will tell you to only use one cane on stairs, using the other available hand to hold the handrail. Hence, even with this device, the wearer still needs ramps and elevators.
Even as this device's design progresses, it still will not eliminate the need for environmental adaption (ramps and elevators and spaces wide enough for people using assistance equipment to get through, instead of making it just wide enough for an average "healthy weight" adult to suck in their gut and squeeze through sideways, as some professional and academic environments I've encountered are currently configured).
Also, this device assumes some residual control over the lower body from the looks of things... it's more of an advanced prosthetic. It's not linked into the nervous system from what I see, so it's not able to taking nerve impulses to move the lower limbs, it's just taking the weight off and making the action easier for weak limbs. This means that it is not useful for anyone who is "fully" paraplegic or beyond. Steven Hawking would not benefit from this device, and one that would benefit someone of Dr. Hawking's level of physical restrictions is, in my opinion, unlikely to be developed within my lifetime (i.e. the next 50 years), even with the present speed of technological advancement.
Secondly, even for those who CAN use it (such as myself) it may have less practical usefulness than a standard wheelchair for many applications/environments. Put simply, that thing doesn't look comfortable for extended wear if you've got issues with pressure points or joint instability. I can't stand wearing my knee brace for more than a few hours at a stretch, it is a supreme effort of will to even wear it 1/2 of my waking hours, because it is really bloody uncomfortable. I have to wear fabric under it, or the materials irritate my skin to the point of forming sores, which could easily become infected (especially with the reduced air circulation in the area in question). This device would not be something I would use on a regular basis, especially when I'll have to be out using public toilets, because I would have to remove it to use the toilet or opt to use an adult diaper if I couldn't remove it to use a toilet. I find adult diapers MUCH more obnoxious than using wheels from personal experience. If the trade-off to be able to use this for 8 hours, assuming the only tradeoff was toileting needs, it still wouldn't be my preferred option for that reason alone. My scooter, on the other hand, between design and "aftermarket modifications", is only slightly less comfortable for prolonged use than my La-Z-Boy recliner (from which I'm composing this comment, around my half-napping toddler in my lap), and I can get it in/out of most handicap-accessible public restrooms without too much frustration (occassional frustrated yells ARE involved, and rarely profane curses are rained upon architects). Using the scooter increases how many of those "waking hours" I actually have by reducing the rate at which my pain fatigues me, since standing upright=pain for me, and pain medications=fatigue/grogginess.
This brings us to the third issue, raised by Oliver, of user compliance. Oliver's statements lack understanding of how it's not a binary in the real world. This is where I see him at his most ableist-minded. It's not a light switch that using a device or having a surgery or taking a medication flips to "normal functioning". There are trade-offs in EVERYTHING a non-mainstream body operator (including differences in physical, sensory, cognitive, mood, etc) does in order to function on this planet (and the planet will NEVER be redesigned to be universally accessible - fact of life). In my case, I might be able to increase how long I could stand, or even hike, using this device, but it could come at the cost of increasing the damage to my joints or sores that could lead to infections... and I do not necessarily find the trade to my benefit enough for daily use (or even monthly use) of such a product. This is similar to pain medication use - I could decrease how much I use my scooter/increase how much I walk in public by increasing how much pain medication I take, but I find the trade-off in fatigue and brain-fog worse than the annoyances that come with being on wheels in public spaces (and even with the pain medications, my kids are faster on foot than I am, I can keep up with them at speed better on the scooter, as long as the little stinkers don't start weaving through pedestrian traffic and other obstetrical, but that's true for many parents - my able-bodied spouse has trouble chasing them in that mode too, thankfully we have been thus far pretty good at convincing them that such behavior is a BAD idea in general). From what I can see of this device, I don't think the wearer would be able to drive a mainstream vehicle with it on either, and it looks to me a LOT more annoying to get in/out of than loading my scooter onto the back of the van and hobbling to the driver's seat on my canes, or for a manual chair user, getting out of the chair and folding it to store wherever. STORING that thing in a vehicle may also be tricky in itself... though it could possibly be easily disguised as a passenger to allow use of HOV-2 lanes if stuck on the passenger seat.
Fourth point, there's a WORLD VIEW of difference between someone who grows up with a difference and someone who acquires it later in life. Probably mostly colored by my long exposure to Deaf Culture, I don't use the word "impaired" when I describe myself and my abilities, unless I've had a bit too much wine. I am disabled in several ways, as in "not able" to do certain things. I am quite comfortable with that term. My environment handicaps me (and others) to various extents in various situations, and I handicap myself (intentionally and unintentionally) sometimes through my interaction with the world around me much as a golfer might handicap themselves - I have been known to intentionally dial it back on the intellectualism for the benefit of those who are a bit slower than myself to facilitate social interactions (which is... well... roughly more than 95% of the population according to various intelligence scales. I'm not a Hawkings level genius, but I am well over 2 standard deviations above the mean at many cognitive tasks). There are ways that I am disabled and ways that I am uberabled and realms that are only a problem until the situation is adapted so I am enabled to fully participate. This doesn't make me a better/worse person than anyone else - I don't bother comparing myself to others much of the time and I really recommend avoiding such comparisons to others (Buddhists will tell you it's a path to happiness, to not look for "better, worse, or equal" but just be and respect the other beings around you). Much of this ease of acceptance of my self as a disabled individual is because it is what I grew up with, and my disability issues have grown and changed as I've developed in other ways - it's just part of my coming of age, so to speak. This situation is MUCH different for someone who suffers a spinal cord injury, which generally doesn't happen until at least adolescence. An individual with a spinal cord injury is facing a sudden loss, and this is what Jenny was contemplating in the end of her post. That is a very different psychological and ethical situation than the one of someone who was born with the ability difference or acquired it as a child (my issues are epigentic in nature - some of it is hereditary but much of it was shaped by environmental factors including nutrition and physical injuries). It's NOT a matter of accepting the imperfect as the norm, as was suggested above, and being too complacent to change it... for someone who was born deaf and encouraged from a young age to accept their Deaf identity (lowercase=medical definition, uppercase=social/cultural identity, for the unfamiliar), even if it were possible to change that to "normal hearing" they could be unwilling to accept the associated drawbacks involved (which really, it isn't "normal hearing" on offer - despite the hype, cochlear implants do NOT give anywhere near normal hearing... if you have any doubt of that ask someone who is late-deafened who has one... plus the trade-off of losing ALL residual hearing in the implanted ear and being stuck needing to get surgery on your skull if the device needs upgrade/maintenance/repair - which is expected to be at least once per decade, plus if the individual was deafened before language was acquired their actual auditory language acquisition prospects are iffy even WITH devoting massive quantities of their early childhood to audio habilitation, and sometimes it's better to just let the deaf kid be a kid who happens to be deaf instead of a constant medical patient). This goes for all kinds of other below-normal-societal-expectations physical/sensory/cognitive/emotive differences too.
I think I had a fifth point... and possibly more... but my husband is getting quite jealous of my ability to spit out a term paper as a blog comment seeing as HE has been working on an actual term paper all afternoon (and I did the majority of this WHILE tending to our youngest child while the other two are playing elsewhere in the house). Intellectually, I make most superheros look like the gimpy ones ;) Except maybe Professor X, but I still see myself as an upgrade on him. He can't lactate.
Ahmie Yeung — March 2, 2012
Hey, came across this today in one of my online disabled communities that I ignore way too often ;)
http://www.wired.co.uk/news/archive/2012-02/21/tongue-drive-system
thought you might find it interesting as a continuation of this conversation and cyborgology in general
Progress Vs. Ableism Revisited: The case of the “Bionic Woman” » Cyborgology — May 15, 2012
[...] ReWalk suit resembles closely the Ekso suit that I wrote about previously and raises similar questions. They both enable people with spinal cord injuries to stand and walk. [...]