On Destigmatizing Difference

Last Saturday I got myself a pair of those sneakers with small, removable wheels in the heels that seem to be popular with the pre-teen set. Frivolous? Perhaps, but they were on sale, and I'd been eyeing them longingly for over a year, thinking about how much fun it would be to zip around and spin and glide across smooth surfaces the way I saw countless 12-year-olds doing whenever I went out anywhere. And I've been tremendously enjoying this alternative means of traversing horizontal surfaces, to the point where "normal" walking is beginning to seem a bit, well, pedestrian.

I've always been intrigued by nonstandard methods of locomotion (possibly starting in infancy, when I supposedly preferred to crawl backwards). By around the age of three, I'd also developed a fascination with mobility devices, including crutches, wheelchairs, and walkers -- all these things feature prominently in my early drawings, and I remember very contentedly sitting and drawing them, trying to get the lines and angles just right. My fascination with these devices completely independent of the social and cultural baggage I later realized was attached to them -- I saw them as interesting objects and as tools.

It wasn't until mid-adolescence when it started to dawn on me that devices like crutches and wheelchairs carried strong associations with pain and pity for many people. Finally, I knew why people had expressed so much discomfort with my interest in (and use of) such things...they didn't see them as tools or even toys, as I did, but as symbols. Symbols of states in which they preferred not to imagine themselves, and symbols representing the shapes of things most people would seek to discard, rather than embrace.

But is this truly an accurate or constructive way of looking at things? As far as this author is concerned, no, it isn't. There is nothing remotely progressive about holding on to old symbols and archetypes when rather than deepening and enriching and explaining various aspects of sentient existence, these sociolinguistic objects start to supersede and obscure the power of the actual, physical objects they initially applied to (while simultaneously, and often unwittingly, devaluing the people who would make good, practical use of these objects).

While there is doubtless power in language and the reality-structures created by language, there is a different but no less real power in the physicality of things that exist even when our eyes are closed, our ears are blocked, and our attention is diverted. Without cultural baggage applied, a crutch is simply a versatile piece of wood or metal, and a speech synthesizer is simply another voice with a person behind it.

I fully support the right of all persons to seek and access the means to alter their intrinsic physical/cognitive configuration, regardless of whether that alteration brings that person closer to or further from contemporary norms. But I also support the right of all persons to not alter themselves or be altered except under the circumstances of informed, nonduressed consent. These are the tenets of morphological liberty, which represents a point of stark and obvious convergence between disability theory and the emerging technosocial discourse surrounding the emerging and potential applications of transformative technologies.

One of the important implications of holding morphological liberty as a primary ideal is that if a majority of people truly recognized this ideal, we'd probably have a lot easier of a time getting various kinds of adaptive technology to people who might benefit from it -- and in the process, we'd be broadening the scope of what is considered acceptable in terms of societal and personal functioning.

This is why I defend my philosophical positions on such matters with primary regard to morphological liberty and the value of diversity. Romanticizing disability might initially sound progressive and inclusive, but taken too far, it can lead to a kind of depersonalization every bit as insidious as the sort that stems from taking a "leave-the-weak-ones-for-the-wolves" utilitarian position. It is no more right to turn someone into a political or even religious symbol (as in the case of Audrey Santo, who had akinetic mutism, and is described as "an instrument" and "one with Christ") than it is to smother them with unrelenting patronization and pity, and indeed there's something inherently patronizing about making someone into a symbol.

People who need feeding tubes, ventilators, wheelchairs, crutches, or speech synthesizers should certainly be looked upon with no greater horror or disgust than people who use calculators or roller skates.

But at the same time, such individuals should not be reduced to embodiments of even supposedly "positive" disability stereotypes, such as the hero archetype.

People are people, not archetypes, and when people require or prefer to use particular technologies in going about their daily lives in a maximally enabled and participatory fashion, it is the responsibility of an inclusive society to consciously blur the lines between intrinsic and extrinsic means of technological enablement.

Certainly, if someone wants surgery to address their paralysis they should be able to get it, but if this sort of surgery is offered only in the context of a culture that pities or talks patronizingly toward people who use wheelchairs, then there can really be no such thing as informed, nonduressed consent.

Upon encountering a person, it should not matter to any of us just how this person chooses to seek enablement with regard to their social participation. Modern humans are already beginning to blend with our machines, to the extent where the loss of a PDA can be tantamount, functionality-wise, to a traumatic brain injury. And as such, it only makes sense that a rational culture would be lenient and liberal with regard to the various means by which people can creatively address their challenges.

The destigmatization of adaptive technology is part and parcel of the process of technodevelopmental change along a positive trajectory likely to lead to a far more inclusive, and therefore better, world for everyone. Though (as noted above), romanticization of any challenging aspect of the sentient condition is generally ill-advised due to its depersonalizing potential, it is also an unwarranted invocation of a slippery-slope to suggest that by accepting different, more diverse, and even radical lifeways and morphological states, we're somehow going to end up harming people.

Quite the opposite is probably true, and I see widening the sphere of acceptance and validation of multiple diverse forms and ability sets as being absolutely essential to the survival of sentient life into the future. Neither liberty nor democracy is deepened through simplistic practices that are enacted in the spirit of "culling the herd" of deviation and difference just so that the normals don't have to deal with the weirdos, the cyborgs, the differently-enabled, the morphologically interesting.

It should not be considered overly idealistic to expect that a society can provide both acceptance and liberty to change, and liberty to not change, and liberty to change in particular (and not necessarily normative) ways. In fact, a commitment to morphological liberty and valuation of diversity (not merely for its own sake, since there you run the risk of turning people into symbols) means that we must demand a social, political, and technological landscape that meets the aforementioned criteria. None of us should ever be too timid to demand too much of the future.