"Ableism is so pervasive that it is difficult to identify until one begins to
interrogate the governing assumptions of well-intentioned society.
Within the space allowed by these rhetorical premises, ableism appears
natural, necessary, and ultimately moral discrimination required for the
normal functioning of civilization."
[A]bleism is that most insidious form of rhetoric that has become reified
and so widely accepted as common sense that it denies its own
rhetoricity—it "goes without saying." To fully address it we
must name its presence, for cultural assumptions accepted uncritically
adopt the mantle of "simple truth" and become extremely difficult to
rebut. As the neologism "ableism" itself testifies, we need new words to
reveal the places it resides and new language to describe how it feeds.
Without doing so, ableist ways of thinking and interpreting will
operate as the context for making sense of any acts challenging
discrimination, which undermines their impact, reduces their symbolic
potential, and can even transform them into superficial measures that
give the appearance of change yet elide a recalcitrant ableist system..."
[Excerpts from James. L. Cherney's "The Rhetoric of Ableism."]
I'm
a mother and a nurse, not a scholar. I'm not going to make any
pretensions about that. I'm also a half-assed gardener and
occasionally, I take a pretty picture of something I've grown or of
someone to whom I've given birth. As a "writer" I am one voice in the
wilderness of the blogosphere. I came into this role woefully
unprepared and in the process have discovered many things about Down
syndrome, our world, our Western society and indeed, myself. I started
this place as a "Mommy blogger" and am slowly growing into a disability
advocate. I started out thinking that I could try to change a few minds
and that would help create a world that was more receptive to people
like Wyatt. I wanted to help build a garden where old stereotypes did
not linger in people's minds. A world where the phrase "my son has Down
syndrome" would not automatically generate uncomfortable looks,
apologies or awkward exclamations of sentimental rubbish.
Lately, I've been preoccupied with the subject of ableism and how it impacts my son. Western culture is rife with it. It is buried, deep within the rhetoric,
deep within the language that we use to share our opinions to one
another. When it comes to the subject of advancement of people with
intellectual disabilities such as Down syndrome, the tools that we
advocates have
chosen to use may appear to advance our goals of inclusion and
acceptance. Sadly, those tools, in many cases, do the exact opposite.
How we view disability,
how we see each other, how we as parent and friend advocates feel about
the the world-at-large all impact our efforts. I've also realized that I
shouldn't be planting anything for my son, but rather preparing the
soil for him to sow a garden of his own.
It was those two quotes above that finally clarified what I had suspected for some time. We are overgrown with ableist
rhetoric, whether we mean to be or not, no matter how "good" our
intentions. On the surface, the very words that we choose shape how
others perceive us and how we see the world. The grand daddy of them
all, the R word, is a perfect example of this. However, the dialogue goes deeper than that. Like rhizomes, negative concepts that shape our entire perception of disability are spread throughout our history,
dating back to Aristotle. As Cherney states, ideas such as "normal is
natural", "disability is evil" and the "body is able" are rampant
throughout the Western world. Other rhetoric, including those that
incorporate socioeconomic or religious ideals (such as "disability is
uneducated", "disability is baseborn", "disability is ethnic") seem to
sprout up everywhere.
These are all part of our great post-colonial tradition of "less than". Our everyday language shows that we see others with disdain. That able
and functioning at optimum physical perfection is what we are all
supposed to be and anything else is a failure; lesser; unworthy. Even
amongst "disabilities" there is a difference. We in the Western world
commonly refer to those that employ physical assistive devices such as
wheelchairs and support animals as "differently abled". Those that have
cognitive impairments however are "developmentally disabled".
As I've mentioned, I come from a medical background. For years, I embraced a more mechanical definition of disability, which in its most basic form states "this part isn't working as it should, therefore the patient is disabled". The person is seen as broken, malfunctioning, stunted. This quickly leads to pity disguised as empathy. Then to romanticism, as an artistic touch is now given to what is "broken". A more realistic viewpoint is the social model;
this way, disability is described by a series of barriers, exclusions
and negative attitudes (that includes language). An individual may have
a physical, cognitive or psychological difference from their
neighbours, but it is the lack of societal provision that makes it an actual disability.
Humanity is diverse and flourishing; it is only when a person runs
into a situation where their needs are not met, can they be defined as
actually having a disability. Most can easily relate this model
to well known things, such as ramps or closed-captioning. However, when
it comes to DS and challenges of communication and interpretation, as a
culture we cannot seem to move beyond the medical model. No one seems
to want to say that it is society that has disabled these individuals,
not their neurological makeup. Even within the whole of the disability
community itself, those with Down syndrome and related developmental
disorders are considered less than.
From the medical tradition you also get the -isms: Infantilism,
where those with DS are seen as adult babies, "Baby Huey", or 'forever
children'. It is probably the most insidious, as it strips all dignity
and sense of self and worth from the individual. They are forever dependent, in the most basic sense. There is also Anthropomorphism,
where those with Down syndrome are referred to in supernatural or
angelic terms or possessing traits that are more like "powers". Quite
possibly the most sneaky of them all (and one that I am guilty of as
well) is Paternalism,
where all decisions, beyond a point where they should be made by the
person themselves, are removed and placed in the hands of those who are
deemed--by the same abilist society--as being more qualified, be they
parent, school, doctor or organization. This model often decides "what
is best" and assumes as Cherney states, that "it goes without saying",
based on old, outdated practices and ideas. For example, we are told
that those with DS do not follow "typical" patterns of growth or
development and that these ideals should not be applied. Yet, we still
continue to apply them with the attitude of "how else will we know whether the child is behind?",
instead of just allowing the child to develop at their own pace in a
loving, supportive, caring environment. IQ tests are culturally biased
and archaic, yet we still continue to use them to determine 'level of
cognition' and therefore predetermine a person's 'functionality' and
thereby, worth. Our organizations, both religious and
philanthropic, readily fall into this trap too, as they betray their
roots as the charities that they were originally founded as, to help
"the poor unfortunates". Regardless of the origin, regardless of some
degree of "good work" having been performed, regardless of intent, the
result is the same: an abilist act grown of an abilist system. Each
and every time it is employed, it undermines those with Down syndrome.
It hampers efforts to become more visible, for those with DS to move out
of the world of poverty and neglect.
Not surprisingly most of the Down syndrome advocacy movement is borne
of this ableist system, myself included. We allow the rhetoric to
continue by ignoring demeaning language such as the R-word, by
describing our loved ones in childish terms, by giving them "angelic" or
"superhuman" qualities, by romanticizing the medical definition of
disability and by continuing to make all decisions for them. We,
the people that are supposed to be helping, are only perpetuating
stereotypes. Pictures of good looking kids with catchy sayings may
sound like a good idea (and I won't deny that there was a certain
purpose served by this initially), but they are not. My son's extra
chromosome is not kitsch, it is not property, it is not made of love.
He is not an angel and he himself is not perfection incarnate. I did
not design him either, nor do I believe a supreme being handcrafted him
for our family... I only had the pleasure of providing half of his
genetic material.
I've
run into a lot of nationalism too. Recently I read a Letterman-style
"Top 10" list of reasons why one particular country was the best in which to
raise a child with complex needs. The article will no doubt be shared
far and wide within the advocacy communities and it saddens me, as the
article itself is so rife with inconsistencies, poorly researched
half-truths and flat out falsehoods that it actually turned my stomach
to read it. Blogging communities seem to be often divided among these
national lines as well. There also seems to be some kind of hierarchy
in the advocacy world; the more disabled your child/loved one/you are,
coupled with the amount of "time served" you have in this community, the
more of an "expert" you are. Assuming there is such a thing in the
first place. Politics within the movement itself are rapidly threatening
its very life; I don't know whether to laugh or cry when I see those
calling for inclusion acting very negatively and exclusive in their
practise.
But
what about the world outside? Much of what gets published about Down
syndrome or special needs in the mainstream these days might as well be misery peddling. Subjects that go well beyond simple anticipatory grieving seem to be de rigueur
and are now perpetuating the negative stereotypes that we are fighting
so hard against. Initially, I'm sure this trend was meant to be a way
for parents to find fellowship in what can be some very long and
seemingly isolating days. But, how much negativity can one person read
surrounding a certain condition before they start applying those traits
to that condition? In our sensationalist world, unless a piece about
disability keeps things at status quo (ie: 'less than'), it is
not publishable. Full of anger towards your child's diagnosis? Blame
your child's diagnosis for your own personal issues? STOP THE PRESSES!
Depression, disgust, having to "force" one's self to play with one's
own child... these are are all things that go well beyond the realm of a
grief reaction or situational crisis and in the end only feed our
detractors and probably belongs in a therapist's office. In the end,
which is worse? Our own community disparaging those that they claim to
represent, or those outside that hate our kids?
Then
there is the stereotypical "Down syndrome superstar", who by having a
prom date or scoring a goal or participating in a major life event,
allows all to feel misty, paternal feelings. Add a little more
anthropomorphism, in the guise of "angels" and "my child has made me a
better person" and you have the domain of inspiraporn, which is
just more ableist rhetoric. The reality is that not every child will be
a superstar and the effects of the extra chromosome will vary from
child to child, as well as the resources and supports made available to
them. I'm personally guilty of this one, not realizing that the reason I
felt the way I did when Wyatt was diagnosed with his AVSD (and probable
chromosomal disorder) in utero, was the ableist society in which
I lived. If my culture had not continued to push the idea of the
"hardship" or the "broken child", would I have been as sad as I was
initially with his diagnosis? Would I have grasped blindly for for the
first sign of positivity, the first glimmer of "hope" in the form of
staged photo-ops and over the top inspirational motifs? Let me put it
another way: if one truly accepts people with intellectual disabilities
and developmental delays as equals, these stories would not be news.
However, many cling to them desperately, willing to overlook the weeds
of ableism and instead renaming it a wildflower of "awareness".
What this civil rights movement needs is more
visibility. Not from parents or people like me, but from the
self-advocates themselves. That is why I share almost everything from VATTA blog on our Facebook page. It is the people with
Down syndrome who need to create the language that describes them, it
will be the self-advocates that create the new rhetoric to promote
neurodiversity. It is happening. Slowly, seeds are germinating.
As
one of my children has Down syndrome, I've had to evaluate my
perceptions of disability over and over. How will this affect Wyatt?
How can we, as his parents, best guide him to adulthood and allow him
the freedom to advocate on his own behalf, whatever form that may take?
To reach "his full potential" on his own terms, not our abilist ones?
At what point do I stop "parenting" and become "paternalistic"? For
now, I guess, my job is to continue to expose the rhetoric and ableism
while nurturing the creation of a new construct, a new set of
definitions that not only include neurodiversity but were created within
that community. Despite how disheartening all this can be sometimes,
despite how physically and emotionally exhausting it is, I will continue
to prepare the soil of this revolution. My family will continue to
explore the world of Intellectual Disability and Developmental Delay the
only way we can, through the eyes of others, including our son. I must
persist with preparing this earth for my kids as they grow. I know,
one day, my son will communicate "It's ok, Mom... I've got this"
and I will happily put down my bucket and drink a Mojito in the shade.
Until that time however, there is much work to be done. All are welcome
to offer a little sweat equity; there is a lot of weeds to clear, soil
to turn and rocks to pick...
---------------------------
Cherney, James L. "The Rhetoric of Ableism." Disability Studies Quarterly 31.3 (2011): The Rhetoric of Ableism | Cherney | Disability Studies Quarterly. The Society for Disability Studies. Web. 03 July 2013.
[Originally appeared on Down Wit Dat]
