You’re More than the Name for What You Have.

[title text=”by Gerry Arango, author of What Would Nola Do? What My Mother Taught Me about Showing Up, Being Present and the Art of Caregiving“]

My friend James says he’s brain damaged. I say he has a traumatic brain injury. I hear a big difference, which is why I try to use the second term to refer to his condition. As a person immersed in special education as a parent of a child with a disability, a former special education teacher and a professor of special education (I wasn’t kidding about being immersed), I’ve picked up a few concepts that I think go beyond education and leak into life in general. This one is about perception. How do you see yourself? Damaged? How do you describe yourself? Damaged? How does the choice of your words affect how others see you? Damaged.

My son has Down syndrome. That’s how I say it. I hear it said that way by many parents I know who have kids with disabilities, not disabled kids. Nic has Down syndrome. But depending on who you ask, Nic is also mentally retarded, a “Down’s child,” a retarded child, a disabled child, and—ewwww!—a special child. There are lots of identifiers that place his disability before his basic personhood. I hate ’em all. I don’t think my disdain is denial; I just wish people who use terms like these would remember that he is a child first. He is more like other children than not, but he often gets singled out, in life and in the choice of descriptors used about him. So I like to put the commonality first, a child, and the descriptor second, with Down syndrome. In my world, they call it “person-first language.”

Sometimes, the idea of James saying “I’m brain damaged” stops me in my tracks more than his actual traumatic brain injury does. It makes him sound like he is the very different person I insist he is not. What must it feel like for James to describe himself that way? When I think of damage, I imagine the damaged goods section of the supermarket where soup is cheaper because the can has a dent or the clothes-pin bag has a hole that the store taped up and took off twenty percent. Damage is something that happens to objects. It makes them less valuable.

Items get damaged, people get injured. Damaged stays damaged, but you can recover from an injury. I like the idea of James recovering from a brain injury, and I’m sure he could develop an affinity for this idea as well if he gave it a chance.

Injury suggests a capacity for healing as well. It seems to me that two things are going on: One, you have an illness or disability. Two, you have how you feel about your illness and disability. You may never recover from an illness, but how you feel about your illness can be healed. You can heal from an injury even if it is never cured. How great would it be if James could be healed of the feelings he has about his injury, whether or not he ever recovers from the brain injury itself?

Sometimes this person-first language stuff is a mouthful. I make my sentences longer but my intention clearer when I talk about my son who has an intellectual disability rather than my intellectually disabled son; but I do my best to try to use it when speaking about this particular attribute of Nic. It seems more respectful to me, making Down syndrome just another trait of Nic’s, along with pre-teen, Pee-wee Herman video fan, Elvis aficionado and reluctant church-goer. Person-first language makes brain injury an attribute of James’s, albeit a major one, but just another descriptor, along with priest, Irish guy, Dallas Cowboys fan and lover of the pepperoni slice.

Language is powerful.

Gerry Anderson Arango is a caregiver, mother, wife and professor of special education. She writes, teaches and presents on a wide variety of topics in inclusive education, parenting and person-centered planning. She is the author of the memoir What Would Nola Do? What My Mother Taught Me about Showing Up, Being Present and the Art of Caregiving, (SilverXord Publications, 2014), recently named one of Amazon’s “Hot New Releases.” Gerry lives in Wallingford, Pennsylvania with her husband, two teenagers and a hyperactive Labrador.

You can find her on Facebook and at Down Gluten, Down Lactose, Down Syndrome: A Search for Good Eats and A Little Enlightenment in the Midst of Dietary Restriction, Disability and Other Stuff.

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1 Comment

  1. Believe me, I’m not bragging, but I just wanted to give a positive feedback, and praise other Carers & myself for doing such wonderful jobs Caring for our loved ones, especially if they are children. Without going into great detail, I’d like to say that my daughter had cerebral palsy and a host of other problems. Like most other Carers, I fought like Hell for my daughter for many years. Last year (through her own efforts and determination – combined with my ongoing, but decreasing, support), she received a glass trophy to recognise her caring nature as she helped other people who were not as fortunate as her. This is not a miracle but is down to her hard work, combined with my caring support over the years. This is worth every battle and it shows the importance of being a Carer – which has certainly improved my self image. Much more important is that she feels really good about herself. I know this because she has the confidence which really allows her lovely caring nature to shine.


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