image courtesy of Allspire via flickr.com
We live in a world of labels. The wrong one can be devastating, but a good label can get across a complicated idea, make it easier to understand and talk about. Here are some of the labels I think about all the time.
Although it sounds fancy, this label is not a medical term or a diagnosis. Chloe’s official diagnosis is “static encephalopathy with spastic quadriplegia and athetosis.” Which means she has a brain injury that affects her muscles, and a simple way of saying that is cerebral palsy. I say sa-REE-bral, but some people say SER-bral. I can’t figure out if this is a regional thing or what.
Our go-to word. Disabled can be seen as problematic for its negative quality (not-able), and yeah, some conditions could be more accurately described as differently abled rather than not abled. But I think in Chloe’s case, it is both accurate and useful. Let’s face it, Chloe is unable to walk. And when we’re faced with stairs or mud or snow or a bumpy field, it’s a pretty big hindrance.
Disabled often gets replaced with terrible euphemisms, because people who are uncomfortable with disability try to hide it behind sentimental or vague terms. This is especially true when it comes to kids. The worst one I’ve heard is extra-exceptional. As in “I just love working with extra-exceptional kids!” When a therapist said that to me, I had to fight the dual urges to laugh in her face and walk out of the room. I won’t have a grammar-geek fest over how ridiculous it is to modify the word exceptional with an adverb like extra, but if you would like to do that, here is the definition of exceptional.
A euphemism for disabled. Not as bad as extra-exceptional, but like that term, special needs has an element of compensatory sentimentality, which makes it sound patronizing. Special needs and its cousin, special ed, get used pejoratively all the time. Once, another mom in a therapy waiting room woman told me that she homeschools her two children (both on the autism spectrum) because “special ed teachers are usually special ed themselves.” She probably didn’t realize that with her obnoxious insult to teachers, she was also insulting her own kids.
Kathy Snow of disabiltiyisnatural.com doesn’t like this term, pointing out that the “special” needs of people with disabilities are just variations on the tools that we all need to make it through life. Which is a good point. And disability is natural, not special, and it should be seen that way. However, when your kid is the only one in her the school who uses a wheelchair and can’t speak, her needs are pretty damn special for the people who have to meet them.
Totally out of style these days, but, after looking up its history on a very entertaining Snopes.com article, I now have a special place in my heart for the word handicapped. Forget about the whole “handicapped came from a time when disabled people had to beg in the streets” myth. Basically, the horse-racing version of this word is the original: as Snopes puts it, the word has always been “a term for leveling out the field by making the stronger contestant bear a penalty.” So I would be proud to call Chloe handicapped, since it implies that without her physical limitations, she’d be too awesome for this world.
Also, is it just me or is handicapped parking still the only thing that sounds right? I sometimes try to say disabled parking, but it sounds so awkward.
When Chloe was a baby, I realized I needed a new label in my life—a term to describe other people’s kids, the ones that weren’t disabled. As in, “you don’t understand because your kid is…” I came up with regular, which I kind of liked because it implies a boring, everyday quality. But that does that mean Chloe is irregular? Like the cheap clothes you get at TJ Maxx? Then I discovered what other people use, and it’s perfect: typical.
I love this word, because its opposite, atypical, is not an insult. Atypical is not abnormal or irregular; it’s interesting, even refreshing for those of us who enjoy variety in life. And although typical is not a negative word, you can say it with a tone of scorn that’s really satisfying when you’re feeling resentful. “Your seven-year-old just read all the Harry Potter books in her spare time between soccer and gymnastics? Typical.”
This one is still used as a diagnosis, though that is changing as it gets a reputation as “the R word.” It will hopefully soon be completely replaced with “intellectual disability” so that the medical diagnosis will no longer share a term with a stupid insult. But the problem with retarded is not inherent in the word. Before we had retarded, we had idiot and moron, both words that began as descriptions of a disability and turned into pejoratives. This happens because we live in a world where people whose brains function differently are not usually respected and valued. And as long as this is the case, suggesting that someone is anything other than neuro-typical will continue to be an insult. But, luckily, it should be a little more difficult for middle school kids to use the term “intellectually disabled” when referring to someone they don’t like.
I suspect this label is overused. For example, I don’t think Chloe has an intellectual disability, but she’s probably been labeled that. People are quick to generalize about abilities and disabilities. Chloe can’t speak, a very specific physical disability. Which means she can’t tell you what she’s thinking. Which means that many people assume the answer to “what is she thinking?” is “not very much.” How many other people labeled intellectually disabled actually have very specific disabilities (physical, sensory, expressive) that hide their intellectual abilities from the world?
An intellectual disability isn’t a devastating thing–people with this type of disability can have happy and productive lives. But being mislabeled this way is like being strapped into a wheelchair you don’t actually need.
No one should be reduced to a single word. Chloe is much more than disabled, much more than a kid with CP. But when I need to explain what is exceptional and atypical about our lives, I need these labels. I choose them carefully and probably overthink them sometimes, but they get the job done.