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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4 Responses to “Alphabet soup”

  1. Jon Says:

    Amen, Sister! (I mean that in a spiritual sense, not the Luke and Laya sense; if I ever find out we are siblings, I promise I will choose a nonpublic forum to tell you about it. Even if we were, though, I think I’d still want to be married to you, because you are awesome.)

  2. Kimberly Parker Says:

    Thank you for expressing my feelings EXACTLY. As an advocate for families, I spend much of my time translating useless jargon. (As a former attorney, I’m specially trained to understand big useless overly technical words meant to exclude commoners). I once phoned an entire list of “disability organizations” in Arkansas and not one person was available to answer the simple questions I had as a parent of a newly diagnosed child. Enough with the brochures! Most of the time I could care less about an organization’s charter, source of funding, or ever so helpful vision statement.

    Glad to see you are back to your blog!

  3. camillajoy Says:

    Well said, Kimberly!

  4. Marsha Says:

    I agree!!!!! Do it Camilla!


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