Banner
    The Power To Label: Finding Our Own Swagger
    By Kim Wombles | October 6th 2012 10:30 AM | 2 comments | Print | E-mail | Track Comments
    About Kim

    Instructor of English and psychology and mother to three on the autism spectrum.

    Writer of the site countering.us (where most of these

    ...

    View Kim's Profile
    One of the interesting things in the online autism world is how the use of labels and definitions created by mental health professionals are being taken over by the community. Autism is redefined away from a mental disorder to a neurological difference, and labels are adopted by individuals and reworked into personality traits and features that are innate to the person and not a signifier of defects  or deficits.

    There is plenty of pushback against this, with many parents insisting that their child is not autistic, that autism is not a fundamental and natural neurological difference but instead is a disease, a disorder, something that has gone horribly awry. Kim Stagliano, in her latest piece on Huffington Post, politely pushed back when autistic individuals argued her title, with Autism Sucks in it, was offensive to them. Autism, she argued, was a DSM diagnosis, not a lifestyle, not who her daughters are.

    Both young and older adults who identify as autistic, who see themselves through that prism of autism as a neurological, natural difference, have fought to have their ideas heard by parents, to change how people, especially parents, talk about autism and autistic individuals.

    Obama, in the recent debate, used autistic rather than person-first language and is getting both accolades and grief for that terminology. Almost all state organizations and even many non-profits, even those specifically focused on autistic and disabled adults are insistent on person-first language, while those active in the international online community are comfortable with identifying as autistic. There's an active and heated debate on autistic versus a person with autism that's unlikely to change any time soon. After all, when you have people like Ann Coulter insisting civil rights are only for black people, the idea that the disability community might have the right to self-identify and choose its own labels and definitions for those labels is a hard one to wrap one's head around.

    Since disability is so prevalent in our society, one would think that we would have a better handle on it, be more accepting of it, and have found a way to discuss it without acrimony. According to the US Office on Disability,
    • Today, 54 million people in the United States are living in the community with a disability. That’s one in every five people. According to the most recent census data, around 52 million of them reside in the community (US Census Bureau 2002). Additionally, about 2 million people live in nursing homes and other long-term care facilities.
    • Some people are born with a disability; some people get sick or have an accident that results in a disability; and some people develop a disability as they age. 
    • The reality is that just about everyone – women, men and children of all ages, races and ethnicities – will experience a disability some time during his or her lifetime.
    • As we age, the likelihood of having a disability of some kind increases. The likelihood of having a disability increased with age. For those 45 to 54 years old, 22.6 percent have some form of disability; for those 65 to 69 years old, the comparable estimate is 44.9 percent; and for the oldest age group, 80 years old and over, the prevalence of disability is estimated to be 73.6 percent.
    Really, given the wide array of possible issues that exist and give rise to impairment, it ought to be an easy thing to have full inclusion and a society that it is structured with the idea that there are a range of functional capabilities and that the infrastructure should be built around this. Of course, it's obvious that this is not the case.

    Not only does our society not lend itself to full inclusion of those with disabilities, it actively decides who is disabled and who is not. Disability is not, according to James Charlton, something the individual decides on, nor is disability inherent (despite the Office of Disability's assertion that some are born with disabilities): "disability is based on social and functional criteria. This means, first, that disability is not a medical category but a social one. Disability is socially constructed."

    How many people in the wider community would be surprised at this idea that disability is a socially constructed thing that is imposed by society onto individuals? Charlton writes that "People do not get to choose whether they have disabilities. Most political activists would define disability as a condition imposed on individuals by society."

    The argument being made here is that where society considers a trait or a feature to be within the norm and an acceptable variation, disability does not exist. Where society does not accommodate or accept a functional difference, the society imposes disability on the individual with the difference.

    The overarching goal of most of the competing interests in the disability community is to create full participation in the community and society the disabled individual resides in. It's to gain equality. How people go about this is where much of the conflict arises. One side argues autism is something that has been added on to the person, obscuring the true person, and the key to equality is a cure. Another side argues that autism is a natural, innate difference and that neurological differences are normal, natural variations and therefore equality exists--society needs to change to see that and make the accommodations to see that equality realized.

    In the end, whoever has the right to label and define has the power. Currently, society labels and identifies, and the medical model of disability is the power-holder. The fact that the DSM-5 has been delayed in its publication as the public weighs in on labels and definitions is an indicator that the medical model is inadequate and that deficit models are not helpful when it comes to creating equal playing fields for all individuals, regardless of their functional capabilities. Deficit models are inherently about isolating individuals from society and stigmatizing them as different and lacking. Charlton notes "that when a person becomes disabled, he or she immediately becomes 'less.'" The disability rights movement is about changing this--about removing the shrinking of a person. In order for the disability rights movement to succeed, though, the majority of society will need to take up this call, as well. Surely, as we move into the category of disabled as we age and accrue more functional differences, this will become an easier thing--after all, if there are 52 million people out in the communities now, living in society, our numbers together are sufficient to change the way the disabled are treated and viewed.

    We will, first, though, have to stop seeing ourselves as less simply because we are faced with challenges that illness, disease, and neurological and physical differences impose. Part of that undoubtedly lies with claiming the right to label ourselves.

    Labels have power and choosing our own label lets us give the metaphorical finger to others (and sometimes the literal finger). As Nancy Mairs shows, labeling ourselves can make us cocky, give us back our mojo:

    I am a cripple. I choose this word to name me. I choose from among several possibilities, the most common of which are “handicapped” and “disabled.” I made the choice a number of years ago, without thinking, unaware of my motives for doing so. Even now, I’m not sure what those motives are, but I recognize that they are complex and not entirely flattering. People—crippled or not—wince at the word “cripple,” as they do not at “handicapped” or “disabled.” Perhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates /gods /viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger.

    Comments

    rholley
    Some of these issues were felt this year in regard to the Olympics vis-à-vis the Paralympics.  People on TV felt a bit awkward about how to refer to the “main” Olympics without downgrading the Paralympics.  It certainly helped to learn that the derivation of the name comes thus:
    The present formal explanation for the name "Paralympic" is that it derives from the Greek preposition παρά, pará ("beside" or "alongside") and thus refers to a competition held in parallel with the Olympic Games.
    From the Wikipedia article.  It was also good to learn about how they were effectively founded by Sir Ludwig Guttmann.  His life story is well worth reading.

    But what to say?  Should one be a bit Irish, and talk about the O’Lympics and the Paralympics?  Or maybe think like a chemist, and call the main event the Ortholympics, leaving space for, maybe, the Metalympics for people who have been bionically modified?

    Anyway, the Paralympics were greatly enjoyed here in Britain (helped, of course, by our medal count).  The atmosphere was said be one of sporting camaraderie that wasn’t so visible with the Olympics.

    The TV coverage was good, but a little bit less “propaganda” and a bit more game analysis would have been welcome.




    From the first morning of the Paralympic equestrian events.


    Robert H. Olley / Quondam Physics Department / University of Reading / England
    kwombles
    I'm glad that the Paralympic events were covered well there--we barely heard a peep from our media about it.
    “Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity.” --MLK, Jr.