The exoskeleton generation – disability redux

Abstract

From both ethical and scientific standpoints, disability is increasingly seen as a state within which a person is both entitled to be and capable of being remediated. Legal and ethical acceptance of disability has taken place at the same time as rapid scientific developments which present major tensions in how we understand disability and social inclusion. This article explores some of the implications of these developments.

Keywords:

• disability theory
• cure
• choice
• inclusion

Introduction

There is an ongoing synthesis taking place within the relationship between disability and cure.¹ A deepening understanding of human rights has combined with spectacular scientific developments to create an environment that will have significant impact on the collective consciousness of disability. In short, social inclusion is our right and scientific innovation is our tool. However, all is not yet resolved. Two of the most challenging questions that arise from this blending of ethics and science are the relationship of social inclusion to theories of disability and individual choice. These are examined in more detail within the hypothetical example described.

Imagine what would happen if, as of tomorrow, all spinal cord lesions could be repaired within a reasonably short period of time. Would one’s social location suddenly move from one that includes limitations imposed by one or more of personal impairment, political, or social barriers, to one of an able-bodied individual with a temporary illness or injury? Would the social model of disability, which posits disability as being created through environmental restrictions (Oliver 1990; Oliver and Barnes 2012), simply be superseded by a return to a neo-medical model, complete with interventions promising repair and rehabilitation? If these two models, the social and the neo-medical, are posited as the two extreme ends of the continuum of the disability metaphor, would individuals retain a right to choose their own location in the wake of medical advances? If so, would there be a significant backlash towards those who decided to stay sitting in place?

Even without an easily available cure option as already described, the advent of personal use exoskeletons may soon offer many of those with spinal cord injuries an opportunity to walk, albeit without being cured in the traditional sense. Granted, the currently available devices typically require the use of crutches, have substantial limitations, and are extremely costly. However, it is difficult not to reflect on the almost incomprehensible functional improvements and cost reductions of many other electronic devices over the past few decades. Those of us willing to consider signing up for the next or later generation of exoskeletons may be faced with an extremely difficult choice. To stand or not to stand. To walk or not to walk. Any response is fraught with challenges. Identity, social costs, and perceptions, concepts of accommodation, and even employment and academic deliberations would be topics for consideration. Even more challenging would be the theoretical contextualization of disability. Would we require a new model of disability that accounted for what might be deemed to be voluntary impairments? I will briefly touch on each of these, not with an expectation of a resolution, but to help name these categories for discussion and to move them to a position of anticipating the challenges of rapidly developing scientific discoveries rather than serving as after-the-fact maunderings.

Identity

The impact on the selfness of the individual who currently uses a wheelchair will be enormous, regardless of the choice he or she makes with regard to stepping into a new reality. By selfness, I mean to capture both the internal and external influences on the individual’s range of perceptions that inform self-identity, especially those perceptions that have been created following the acquisition of an impairment.²

As many of us with disabilities recognize, those internal and external perceptions can be quite different. I may see myself as relatively nimble and active in my sports wheelchair. Someone observing me may see a person who is limited and restricted in his movements. This difference in perception is easily seen when a person in a wheelchair goes up an escalator. There is a clear divide between those who follow and those who wait.

Whether related to age, duration of impairment, or cultural identity, it is likely that some wheelchair users would prefer to remain so. For the reasons already considered, or for individual reasons which may preclude this option, it may be assumed that not everyone will ‘stand up and be counted’.

Social costs and perceptions

What will be the social costs to those who do not wish to, or cannot, remove themselves from their wheelchair? Unlike those from the Deaf community who, for philosophical, cultural, or medical reasons, do not or cannot avail themselves of cochlear implants, individuals who refuse a medical cure for a spinal cord injury may be seen as purposefully creating unnecessary medical and social costs. These costs could include those associated with direct medical care, vocational rehabilitation, and a range of personal and public accommodations. This latter group, that of accommodations, would be the most likely to become contentious. Why build ramps for those who choose not to walk? Why provide accessible transportation, housing, or recreational venues? The legitimacy of personal attendants and Employment Equity or Affirmative Action programmes may also be called into question. In short, why spend money on people who choose not to help themselves?

Entitlement to accommodation

The ability, whether merely perceived or not, to abandon one’s impairment, coupled with the apparent choice not to do so, is likely to create a significantly increased resistance to the overall acceptance of people with disabilities. Based on the many current challenges associated with these issues, any refusal to accept whatever cure is offered may provide additional support for those who argue that those with disabilities are using those disabilities to gain some advantage.

Employment

As referenced above, the rationale behind what we refer to in Canada as Employment Equity may suffer the same fate as other forms of accommodation. The level of incredulity found within segments of the population that oppose active measures to enhance employment opportunities for those with disabilities may only be increased if those individuals are seen as malingerers.

There is also a key issue associated with accommodations directed toward employment that distinguishes this from other daily living categories. Employment is competitive. Building a ramp does not particularly inconvenience those who prefer stairs. But securing a job necessarily implies that someone else did not get that job. The individual who retains his or her disability and continues to rely on positive employment programmes may well face reduced acceptance in a competitive work environment. Acceptance by others in the workplace has also been well documented as being of significant influence in the employment success of those with disabilities (Antonak and Livneh 2000; Vornholt, Uitdewilligen, and Nijhuis 2013).

Academic considerations

A somewhat more abstruse challenge presents itself when considering the effect of a newly created paradigm of voluntary disability on current theories of disability. Do these current models cease to have application? For example, a necessary premise of the social model of disability is a recognition that disabilities themselves are limitations imposed from without, by a disabling society (Oliver 1990; Shakespeare 2006). Secondly, since the individual impairments that are impacted by a disabling society are most often immutable, what must change is society itself. However, with the circumstance described herein, that model has been turned upside down. Disability itself becomes an individual choice. And if disability is indeed a choice, whose choice is it?

Choosing a model of difference

If choice becomes the defining image of disability, a revisiting of the notion of disability as deviant behaviour may well re-surface. This position, maintained by Parsons (1951), held that those who were sick were not at fault for their limitations but that they had a moral responsibility and social duty to make efforts to regain proper functioning. This responsibility included seeking and accepting appropriate medical advice.

For those who choose to remain disabled, what Siminski (2003) describes as the blame and responsibility, and what Goffman (1963) refers to as the stigma of disability, return to land squarely in the lap of those who so choose. The attributes of impairment and disability, which have been separated by social model adherents (Oliver 1990), now appear to be reconnected through personal choice. The additional premise of oppression, as required by the UK social model of disability (Shakespeare and Watson 2001), creates a further complication. Specifically, choosing disability weakens the premise to a degree such that it virtually disappears.

Although the North American social model has rejected the premise of oppression in favour of a minority-rights paradigm (Barnes, Mercer, and Shakespeare 1999; Davis 2013), this ‘soft’ social model also maintains a perspective that seeks to explain disability by assigning responsibility to the able-bodied majority. Shakespeare (2006, 20) argues that ‘rather than a social theory of disability, we need a social theory of embodiment’. However, the embodiment model brings us back again to explaining disability as a difference from the norm (Darling 2013), without consideration of whether this state is optional. If optional, any biological basis for disability appears to vanish. As argued by Hacking (1999), without a biological basis for disability, a social construction of that identity may not be possible. This leaves those who wish to, or are required to, ‘stay seated’ in a very tenuous position.

Conclusion

We are fast approaching a time when the questions raised in this article will have real implications for those of us living with disabilities; and, if we are not willing to grapple with these issues pre-emptively, there is always the historically established tradition of having our thinking done for us.

Disclosure statement

No potential conflict of interest was reported by the author.

Notes

1. The notion of cure in this context represents the elimination of disability, without regard to the means or choice associated with an intervention.

2. Note that, in this context, we have all acquired our impairment, whether through illness or injury or at the time at which we first became aware of our own congenital difference.