November 28, 2014 - 20:34
As society frames it, disability is a loss and a deficit—seemingly pathological in its very existence. This is also the personal experience of a large portion of the disability community. Acquired disability is perhaps the best example of this: many people, your author included, experience acquired disability as a profound sense of loss, and a source of despair.
What if, instead, we reframed disability of all kinds as a source of gain, as the Deaf community has? This is a large part of the mission of the Disability Studies field, seeking to reframe disability as not just a loss, a deficit, but instead an expression of human difference and variation, and thus a valuable part of the human experience.
Each portion of the disabled community expresses their gain differently: each disabling condition has its unique effects, and each individual experiences those effects differently. Disability is by nature diverse, and it is our differences that we have in common.
The impetus towards redefining from loss to gain is perhaps strongest in the Deaf community, which has one of the most, if not the most, strongly codified culture. In fact, Deaf culture actively seeks to portray itself as closer to an ethnic group or even a counter-culture, in part a reaction to the threat posed by the medical establishment towards the existence of the community, by curing the condition, currently best exemplified by the cochlear implant debate. (Bauman & Murray 2013, 246)
In response to what is often seen in the Deaf community as a threat to their existence [1], the Deaf have sought to redefine their experience from the medical term “hearing-loss”. They have instead turned the terminology on its head, calling it “Deaf-gain” (246-7). They argue for their existence as a unique expression of how to look at the human experience.
The Deaf tend to have much greater visual acuity than the hearing populace, a “unique sensory orientation” as Bauman puts it. (248) The culture of the Deaf is much more attuned to sight, as their language system of Sign [2] is entirely visual, expressed in the hands as Sign. Baumann posits the example that Sign languages have redefined how we think about language, especially within the field of linguistics. (247-8) He further develops this idea, and asks what has and can come from the Deaf community’s unique needs and tendencies [3].
For one of many instances, there is a fascinating architectural movement (250-1) being spearheaded at Gallaudet University called “Deaf Space”, a very organic, curvilinear, and beautiful system of architectural guidelines designed to maximize the communication of the Deaf [4]. Architecture as it is for the auditory populace is often designed towards maximizing hearing range, or even without concern for maximizing anything other than the generalized “function” of the building—it’s only rarely that a room is truly accessible for the Deaf. Deaf Space sought to design around Deaf needs, and yielded a space that is beautiful and functional for the non-Deaf community too.
Let us take another example of something essential to one portion of the disability community that is also beneficial to the non-disabled, from the world of architecture: the case of ramps and other means of mobility accessibility. For people who use wheelchairs, or are otherwise mobility impaired, stairs and even small steps can pose insurmountable difficulties to spatial access. Ramps and elevators are absolutely essential for them to be able to access any space that is raised off ground level. Even for the average, non-mobility-impaired, ramps and elevators are a happy convenience that make life a little easier, especially when a building has many floors, or when a person might need to move a heavy load.
You can thus frame questions of building accessibility as a part of disability gain—many buildings might not routinely have these conveniences were it not for ADA legislation (and indeed many older buildings, exempted from the law, are utterly inaccessible—it was only a step in the right direction, and not a complete societal change).
What is essential for the disabled is beneficial for the nondisabled, too. Thus, this leads to the concept of what a person can gain when they "lose", when a person is or becomes disabled. This is the heart of disability gain: the creativity of working around obstacles, fueled by necessity. It makes us change our perspective from seeing disability as loss and deficit, into gain and creativity. Instead of becoming creative in spite of your disability, you become creative because of it.
Though, there is still the ever-present problem of the non-disabled mainstream of society seeing disability as pathological, and at its heart negative. This is rooted in fairly recent history, and tied to the 20th century attitude of medicalizing disability. Michael Oliver discusses this in his 1990 paper, outlining the medical (or, as he refers to it in-paper, the individual model) of disability. He defines medical-individual model of disability as “[locating] the ‘problem’ of disability within the individual and secondly it sees the causes of this problem as stemming from the functional limitations or psychological losses which are assumed to arise from disability.” (2)
Instead, Disability Studies and the Disability Rights Movement have sought to redefine disability as a societal construct: it is not the condition which is disabling, but the society that one lives in and its inadaptability. Oliver defines it thus: “it is not individual limitations, of whatever kind, which are the cause of the problem but society’s failure to provide appropriate services and adequately ensure the needs of disabled people are fully taken into account in its social organisation.” (2) Society, as it is currently structured, is fundamentally ableist in its constructions.
The conditions that are misnamed disabilities themselves are instead impairing. As Eli Clare defines it, citing another of Oliver’s works, impairment is “lacking part or all of a limb, or having a defective limb, organism or mechanism of the body.” (2009, 6-8). It is very difficult to delineate disability from impairment—it is like asking the question of nature and nurture in child development. We are accultured from the moment we are born, so where can the line truly be drawn, if at all? So too it is with disability and impairment: as bodies and minds cannot truly be separated, and society acts upon the individual, where is it that the line between what is bodily and what is societal can be drawn? [5]
Similarly, what is to be gained from disability cannot be easily delineated. On the one hand, to call impairment and disability only difference and variation in the human experience is to deny the suffering brought upon by that very real loss. On the other hand, in order to gain from disability, it cannot be just loss. We have to add on to that definition the creativity, the empowerment of difference that can be had, and the innovation that becomes necessary in the disabled community.
Disability gain is a very new concept still being defined by the disability studies community [6]. Disability gain, is, to put it as simply as possible, what good comes of a person’s disability and impairment, that would have been unlikely or impossible otherwise. This can be as great as little as finding a new friend from a doctor’s appointment, or as great as finding a new community and way of life that you would not otherwise have access to. In fact, many of the world’s so-called “geniuses” were disabled people, who would not have had many of their formative life experiences were it not for their disabilities.
For instance, Riva Lehrer, the Artist in Residence we have been working with in this 360 course cluster, mentioned at the end of one of her talks that much of her family had gone to medical school and ended up in a medical field [7]. She posited that she likely would have followed the same path, and I would argue would have been very unlikely to produce the groundbreaking artwork that she has if she had not been born with spina bifida. She has, however, incorporated her interest in anatomy and the medical into her artwork, and has taught anatomy at several art and medical schools.
Let’s also take the work of Mat Fraser into consideration. Without his disability, he would not have developed the innovative and many-lauded works that he has as a performance artist [8] had his mother not taken thalidomide while pregnant with him, yielding his phocomelia.
These two artists’ work is not in spite of their disability. It is, in some cases arguably, because of their disabilities that their lives have taken this course. They have gained much because of their disabling conditions that would not have been had they been nondisabled. They took ownership of their conditions, and capitalized on the gains, without disregarding the losses.
However, there are also drawbacks to disability gain. Among other things, the phenomenon of supercripping is pervasive in our society. It is in many ways a cultural trope, that of the “genius cripple”, as the pop-culture encyclopedia TVTropes has termed it [9]. Closely paraphrasing Eli Clare (2009, 2-3), the phenomenon of the supercrip can be seen as stories of disabled people, with an audience of the nondisabled, that focus on people “overcoming” their disabilities. By nature, these reinforce the superiority of the nondisabled. To quote Clare verbatim (2), “They turn individual disabled people, who are simply leading their lives, into symbols of inspiration.”
How, then, can a disabled person achieve without it being seen as an opportunity for condescension and reinforcement of ableism by nondisabled people? This is a question we are still in the process of answering, and one that the Disability Rights Movement is seeking to further illuminate. Lehrer and Fraser are, to this author, people who provide a view into how to own their disability, and regain control over how they are portrayed, by portraying themselves and others with disabilities in ways that are not just disabled, but profoundly human, profoundly relatable in their specificity. It is in ownership and creativity that we can begin to change how disability is perceived in society. We can shift from the trope of loss and deficit, into viewing as human difference and variation, through to empowering ourselves and making evident the creativity that has come to us because of our disabilities. In this way, we, the members of the disabled community, can justify our existence to society, and begin to change the ableist strictures ever present.
Addendum
Initially, what had triggered my interest in this topic was based on my own personal experiences in the spoonie [10] community. I recently posted on a spoonie community Facebook group [11], about my experience of having to go to the emergency room because of disability complications for the first time, and the incredible outpouring of support that came out of it in my collegiate community. As this is a positivity-focused group [12], I framed the post into asking about the good things in the members’ lives that had come out of being disabled, what came into their life because of their life that might not have done so otherwise.
There are still many places to explore, and ways to go in exploring disability gain. I have only explored a few, and hope to follow some potential paths laid out in this paper into further directions in later work.
References
Bauman, H-Dirksen L., and Joseph J. Murray. "Deaf Studies in the 21st Century: "Deaf-Gain" and the Future of Human Diversity." Disability Studies Reader. 4th ed. London: Routledge, 2013. 246-260. Print.
Clare, Eli. "The Mountain." Exile and Pride: Disability, Queerness, and Liberation. Cambridge, MA: SouthEnd, 2009. 1-13. Print.
Oliver, Michael. “The Individual and Social Models of Disability.” Joint Workshop of the Living Options Group and the Research Unit of the Royal College of Physicians, July 23rd, 1990. Print.
Wendell, Susan. "Chapter 12: Unhealthy Disabled: Treating Chronic Illnesses as Disabilities."Disability Studies Reader. 4th ed. London: Routledge, 2013. 161-173. Print.
Note: the title of this essay comes from a rather infuriating advertising campaign by Special K cereal—at first, it appears to be an empowering, feel-good sort of advertisement, and then when you look at it in more detail, it’s actually quite fat-shaming. That is a topic for another time, however.
[1] The Deaf community has often used racialized language to refer to the threats on their community, in some cases calling the threat of a cure for deafness a “genocide”. For a fascinating discussion of Deaf culture, see Andrew Solomon’s Far From the Tree (Scribner, 2012), Chapter II: Deaf.
[2] Here I have chosen to refer to Sign as group, rather than referring to ASL, BSL, or International. Deaf communities, unconnected by any overarching national culture, have developed hand-based sign languages the world over, often independently. Solomon, for instance, references the case of Kata Kolok, a Balinese sign that developed in one isolated village with a high instance of genetic deafness.
[3] An interesting note, further using racialized language: I continuously see and hear discussion of how current American culture, especially the musical culture, appropriates large portions of Black culture, while at the same time societal racism is still strongly present. See, for example the current debates surrounding the Ferguson riots.
[4] For reference, see HBHM’s webpage on the guidelines.
[5] I heartily suggest that my reader read Eli Clare’s work—he puts it much more lyrically than I could hope to, but this is especially evident in the chapter The Mountain.
[6] I am endeavoring to define it as I see it. Rosemarie Garland-Thompson, in fact, just gave a talk on the subject of disability gain at York University two weeks ago.
[7] This was mentioned during the question session following her November 20th, 2014 talk at Haverford College, Jarred: A Self Portrait in Formaldehyde.
[8] I would also argue that Fraser is amazing in the way he has reclaimed an identity of enfreakment, turning it on its head and playing with his audience. A wonderful video in which he demonstrates this is From Freak to Clique.
[9] As accessed Nov. 27th, 2014. Perhaps a better explanation, in-wiki, of the concept comes from the page Disability Superpower. Genius Cripple tends to refer more to scientific genius, more than any other kind of distinction.
[10] I will be including some definitions in these footnotes, when appropriate. In this instance, the term “spoonie” has become an in-group term for people with chronic illnesses to refer to themselves. The term originated from Christine Miserandino’s essay on “The Spoon Theory”.
[11] The group is a UK-based organization called the Pillow Fort.
[12] Their tagline: “making chronic illness suck less!”