Archive for the 'definitions' Category

Labels, Labels, Labels

February 23, 2013

a picture of two blank labels

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.

Cerebral Palsy

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.

Disabled

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. 

Special Needs

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.

Handicapped

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.

Typical

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.

Mentally retarded

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.

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Severe

March 10, 2012

picture of a tornado siren

image courtesy of wonder_al via flickr.com

“Pretty much all kids with disabilities are in mainstream classes these days,” a special ed teacher said to me once. “Well, except for the severe ones, of course.”

She had never seen my daughter. A different special ed teacher took one look at her and said “She’ll be in my self-contained class one of these days. I teach all the severe kids.”

What makes Chloe severe? It’s hard to pin down, but I think mainly it’s her difficulty communicating. The fact that she can’t talk or type. The fact that, in order to take part in a mainstream classroom, she would need a lot of support from thoughtful and creative professionals.

And that’s exactly what she has. Chloe is doing great in second grade (her third year as part of a regular class). She does the same homework, takes the same tests, gets exposed to the same learning opportunities as the other kids. She even had a speaking part in the school musical, with the help of a recorded message and a large button.

So while our school district tends to judge kids like my daughter pretty quickly, to assign her to the self-contained classroom at a glance, I’m happy to report that it didn’t take much to dismantle these assumptions. All the people we worked with were very open to trying something new, to giving my daughter a chance, even though she is “severe.”

So in the end, what does that word even mean?

Alphabet soup

January 17, 2011

“Oh dear,” said the the speaker at a recent training session on disability rights, “we forgot the Alphabet Soup brochure.”

Oh no not the alphabet soup brochure!  I know this brochure well…well, not “well” as in I’ve actually read the thing and found it helpful, but “well” as in I’ve seen its cover of among the big stacks of the other familiar brochures-I’ve-seen-but-never-read at every freaking one of these parent training sessions I’ve gone to.

I have the alphabet soup brochure right here (it’s been sitting untouched in Chloe’s file box for years).  It’s exactly what you imagine: a list of acronyms, each accompanied by the equally meaningless name of the organziation or concept behind the acronym.  Did you know that NASDDDS stands for the National Association of State Directors of Developmental Disabilities Services?  Or that IPII is “Independence, Productivity, Integration, Inclusion”? Me neither.  Will you remember that for more than the three seconds it took you to read about it here?  Me neither.

The back of the brochure encourages parents to start “learning your ABCs” because this bureaucractic shorthand is “one of the more important aspects of your education as a parent of a child with developmental disabilities.” After all, professionals in the field, including government workers and employees of non-profits, will use bureaucratic shorthand when they talk to you.

WHY?  Why oh why oh why do these otherwise helpful and well-intentioned organizations put their resources into creating these useless and intimidating brochures when all they have to do is INTERACT WITH THE PEOPLE THEY SERVE IN A NORMAL, HUMAN MANNER.

This is not so hard.  In fact, this is what I do for a living.  As a communications professional, it is my job to translate jargon into language that is accessible, meaningful and even interesting to the general public.  The environment in which I work is, like the world of disability organizations, chock full of weird acronyms.  My writing, on the other hand, is usually and conscientiously acronym-free.  It’s not that hard, if you just look at your communications from the perspective of the reader or listener, not the writer or speaker.

At this same training, the focus was on the two organizations presenting the information.  How did they get started?  How are they related to federal and state government?  What is their mission? How are they administered?  What other organizations are they affiliated with?

I’ve heard this song and dance about organizations several times, and it’s never helpful.  I still don’t know what most of these organizations actually do. I’ve always been confused about the difference between the Arkansas Disability Coalition and the Arkansas Disability Rights Center. Chloe got Early Intervention services from the time she was born, but when I look at that brochure, I don’t know if it’s talking about a government program, an organization, or simply a concept.  I’ve been a member of the Parent Advisory Council for over a year now, and I’m still not sure what it does.

These brochures, booklets, speakers, etc. work  very hard to spread their information, but they don’t say what parents need to hear.  What do parents need to hear?  That’s simple.   They want to know answers to their questions, and they want to know what questions they should be asking.  They want to know the names, phone numbers, and email addresses of the PEOPLE they can call for help.  They don’t give a damn who these people work for or what their organization’s mission or vision or history or whatever is.

If I were making these communications materials, I would focus on the readers.  Instead of having each of these organizations create their own set of impenetrable literature, I would suggest that each one have one small brochure, then create a set of publications that combined information about all of them.  After all, they all sound the same because, in the way that counts, they all do pretty much the same thing: help people.

This thing actually sort of exists already–it’s called the Parent Packet and it’s created by the Developmental Disability Council.  Who are they?  Don’t worry about it, they make the packet.  It lists all the bazillion organizations, grouped by their general area, like “legal assistance” or “information and referral services.”  (Just an aside, it also usually comes with a handy booklet in which to document your child’s medical issues.  Which was obviously not created by someone with a disabled child, because it is the size of People magazine, rather than the Lord of the Rings series if you include the Hobbit and the Silmarillion.  But I digress…)

I would go a step further with this thing.  Rather than vague headings like “information and referral services,” I would organize it by problems.  Like “I can’t afford my child’s medical care” or “The school is not helping my child learn.”  Then I would list names of people, not organizations.  The organizations would come second, listed by the names regular people actually call them, whether that’s the acronym or the actual name.

So under “I need equipment for my child” you would get “Call Bob (or whoever) at ICAN–555-5555.  He can tell you if ICAN has used equipment (such as wheelchairs and hospital beds) you can have for free, talk to you about what kind of equipment your child needs, and let you try out cool stuff like talking computers.”

Sound to good to be true?  It’s not–that’s what the people at ICAN do, but you would never know it from their entry in the parent packet, which accuses them of providing “information on assistive technology devices necessary for your child.”

I would also outlaw the use of certain terms in publications aimed at the general public.  “Assistive devices” would be one.  So would “transition,” which means the time when a kid graduates from high school.  Why not call it “high school graduation” like everyone else?  Despite the claims of these brochures, people can speak without jargon.  After all, your doctor has all kinds of fancy names for a cold, but when he’s talking to you, he just calls it a cold.

The Parent Packet does list people to contact, but these are usually the executive directors of the organization (or simply “a representative”), which tells me that someone needs to do a little more homework.  Yes, keeping this thing relevant and up-to-date would mean having one for each region of the state, and updating it about every six months.  Where would the resources come from?  From the time and money saved by getting rid of the Alphabet Soup brochure, for a start.

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