Last
week, I had a meeting with representatives from a state agency that provides
services to people with developmental disabilities, and I unwittingly made a
rather significant faux pas. What I did was refer to someone as “a disabled
person who is wheelchair bound.” Based on the reaction I got, I’m guessing this
reference is on par with calling someone something as offensive as a misogynist
or a bigot. I’ve only been working with people with special needs for four
years and haven’t been schooled in the politically correct terminology to use
for different situations. Realizing my mistake, I’ve been thinking a lot about
the labels we assign to people and what those labels really mean.
Take
special needs, for instance. What exactly do we mean when we attach the label
“special needs” to someone? That term could apply to every human on the planet,
when you think about it. We all have special needs that we expect to be
accommodated or overlooked. A person with a severe peanut allergy has a special
need to avoid eating in restaurants that use peanut oil or that serve peanuts
by the bucket while you wait for your meal to be served. A person who is shy
and uncomfortable initiating conversations with others has a special need for people
to understand this and make efforts to make them feel welcome and valued even
though their natural tendency may be to isolate themselves from others. And
children, in particular, have lots of special needs. They need to have
furniture that is smaller, they need to have someone hold their hand when they
cross the street, and preschoolers need to have someone read to them until they
learn to read themselves. Of course, when we say someone has special needs, we
all know that’s code for a disability, but why do we have to designate someone
with that label at all? If a person is disabled either physically or
developmentally, why do we feel the need to point that out when describing
them?
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| Abbey Alford performing at the Dream Big! Recital in May 2011 |
I’ve
been described with lots of labels in my life and you have too. I’ve been
labeled a daughter, a sister, a wife, a mother, a dancer, a teacher, a
volunteer, a philanthropist. I’ve also been labeled as judgmental, opinionated
and bossy, but at the same time I’ve been called passionate in my beliefs and a
take-charge leader.
I
guess labels are important because they can help paint a picture of who someone
is and what they do, what makes them tick. But they can also unfairly pin us
down to a few traits we may have, painting a broad-brushed picture of who each
of us really are.
The
politically correct labels for people who have developmental or physical
disabilities seem to change all the time. They have been called everything from
afflicted and retarded to special or handicapped. I’ve learned that whatever
label we use should be people oriented; the explanation for what disability
they live with should be what is defined as “people directed.” For example,
it’s acceptable to say people with disabilities but not to say disabled people.
They are, after all, people first.
The
students in my programs, The Johnny Stallings Arts Programs, live with
challenges that have profound effects on the way they navigate life, but they
are so much more than the labels they are assigned. Just like I am so much more
than a blonde, middle-aged, woman with Crohn’s disease who is a married mother
of two grown children, my students are so much more than their conditions. Even
so, I find myself feeling it necessary to include their label when I talk about
them. This isn’t because their disability is the most important thing you
should know about them. Rather it's because their achievements, comments,
philosophies and behaviors are extraordinary in and of themselves. When you add
to that the knowledge that they live with conditions that seriously impede
their ability to fully function in day-to-day activities, their labels make
them even more extraordinary individuals.
So
when I use a label when explaining something that one of our students say or
do, I’m not labeling them because I think their conditions warrant explanation.
I use their labels because when you know the challenges they live with, their
actions and comments put into clear perspective the amazing wisdom and ability
they exhibit.
Take,
for example, Abbey. She has many labels I could use to describe her. She is a
13-year-old girl being raised by a single mother, extremely precocious and
remarkably intelligent, self-aware in a way uncommon for kids her age because
she acknowledges her strengths and her weaknesses, a leader in her school and an
academic over-achiever, a dancer and an actress, an astute and keen observer of
people, and she just happens to have cerebral palsy. Cerebral palsy manifests
itself in her in life-altering ways. She has difficulty walking, has endured
multiple surgeries to do everything from replacing a hip to breaking and
resetting bones in her legs to potentially improve her mobility. She has
difficulty eating with utensils, buttoning her clothes, tying her shoes, using
a pencil because her fine motor skills are impeded by the cerebral palsy that
was caused by oxygen deprivation during her birth. When you hear her referred
to as a child with special needs, rather than letting that label tell you what
she can’t do, I hope that label will amplify and enlarge the scope of her
achievements in spite of her limitations.
We
all have limitations; we all have dysfunctions in our personalities that
interfere with our ability to be our best, to achieve all that we are capable
of. But because we are “normal,” we don’t normally have our deficiencies
pointed out when we are described by others. We don’t normally say something
like, “He is a great leader but he is not a good public speaker; or “She is so
smart but is she’s overweight; or “He is a terrific accountant but he is
neurotic.”
So,
when I label Abbey as a child with special needs, I hope it will enlighten
others to the unbelievable abilities she has in spite of her label. Her label
makes the profound things I’ve heard her say even more profound. Like last
month, when Abbey told me, “I’ve decided that everyone has special needs, not
just those of us who have obvious disabilities. And I think we all have two
special needs in common. We all have the special need to be accepted and we all
have the special need to be loved. Some people’s special needs are on the
outside, like mine. And other people’s special needs are on the inside, where
we can’t see them right away.”
The
students I have the honor of working with have special needs. And so do I. And
so do you. All of us should be given credit for the things we are able to do in
spite of our special needs. I hope you’ll think about what your special needs
are and I hope you will take inspiration from others with special needs to
overcome yours, whatever they may be. My students do just that every day - they
overcome their special needs to achieve their dreams.
-Debra
Jenkins, Chairman
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