Sunday, September 16, 2012


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?

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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