Saturday, January 9, 2010

Bad word

As parents of children with disabilities, we are often required to fight battles on the fly.  The monsters that plague our kids rise up without warning, and our responses may be the right ones or they may be driven by fear and our oft-failing instincts, but they are needed at a moment's notice.  We might not make the most appropriate call in those moments, but we do the best we can, which is all we can ever do.

But sometimes, every now and then, we can see the monsters coming from a distance, and in those moments, we have the chance to stand ready.

At the beginning of the school year, we attended our daughter's IEP meeting at her school.  This isn't the kind of anxiety-filled, "go straight to a bar afterwards" meeting that I would have once expected.  When we moved to Schuyler's current school district four years ago, we did so precisely because the district had an assistive technology team, and specifically a class for kids like ours who use augmentative alternative communication devices to speak.  We left behind a string of bad school experiences, of moments when our daughter could have fallen through the cracks in the system.

At the age of three and a half, after failing to develop even the most rudimentary elements of speech, Schuyler was diagnosed with a rare brain malformation called bilateral perisylvian polymicrogyria.  The list of probable outcomes for Schuyler was daunting.  In addition to her lack of speech, we could reasonably expect her to suffer from seizures (as about 90% of polymicrogyria patients experience), feeding difficulties, fine motor problems and some level of cognitive impairment.

Six and a half years later, Schuyler's outcome looks brighter.  Her feeding difficulties are minimal, she has yet to experience any seizures, and thanks to the years she has spent with her speech device, her verbal speech, while still largely unintelligible, has improved dramatically.  She attends a special classroom for speech device users for part of her day, and the rest of the time is spent in a regular fourth grade classroom with neurotypical kids her age.  Schuyler's monster is still with her, but it's leashed now.  Thanks to her hard work, her take-no-prisoners positive attitude and a dedicated support team, her future is one that may be uncertain but is nevertheless loaded with possibilities.

I refuse to let those possibilities be scuttled by a serious word, carelessly applied by professionals.

The word.  The R word.

I have to confess, I have mixed feelings about advocating for gentle disability language.  I never joined any of the "Spread the Word to End the Word" campaigns, and wasn't inclined to join any of the angry protests regarding the use of this word in the movie Tropic Thunder.  I understand the outrage, but in the same way that I've rejected the "universal" acceptance of People First Language, it's not a cause that I can get behind entirely.  In my opinion, shackling the free expression of ideas, even dumb ones, isn't the answer.  It is, in fact, a step in the wrong direction.  I understand that not everyone agrees with me, but that's kind of the point.  Not everyone has to.

I do find the R word to be offensive, however.  Not so much when it's used casually or ignorantly, but rather when it arrives in my daughter's world with full authority.  Insensitive teenagers and edgy comedians don't have power, not in the long run.  Professionals do, they have as much power as we grant them, which is plenty.

At Schuyler's IEP meeting a few months ago, the school's diagnostician stated her intention, assuming we approved, to give Schuyler an IQ test, one that would assign a numerical rating which would place her into a cognitive range.  Against our better judgment, we'd allowed this test a few years ago, but the number that was assigned was high enough to dodge the word, and we went on with our lives.

The diagnostician informed us at this last meeting that based on Schuyler's problems with abstract thinking and her delays in her academic and verbal skills, Schuyler's score on a new test is almost certain to be lower.

Low enough to stick that word on my little girl.

The diagnostician wants this word to become part of Schuyler's lexicon, not because she's a bad person but rather because she wants Schuyler's record to reflect a certain reality, one determined by an easily administered and quantified test.  The appropriateness of administering this test to a nonverbal subject remains a topic of disagreement in professional circles, and the "additional services" that such a score would make available for Schuyler are ones for which she already clearly qualifies.

Schuyler knows about the monster in her head.  She knows about it, she accepts it and she fights the good fight every day, secure in the knowledge that she's different and even broken, but in her daily victories, she becomes more whole than any of us for whom the simple act of speaking is something we take for granted.

Schuyler's difficulties were handed to her, by Fate or Chance or an inexplicable God, and there's nothing any of us can do to change that.  What I can do is resist adding another obstacle to her path.  I can fight having a well-meaning professional attach this word, this fighting word of all fighting words, to Schuyler forever.  It's not a word that can ever be taken away.  It's a bell that can never be unrung.

It's a bad word when used casually by an ignorant public.  It's a very bad word indeed when applied coldly and without consideration by a professional, particularly as a result of a test that probably isn't an appropriate measure, not when administered via assistive speech technology.  And it's a bad word that I will fight, rationally or otherwise, from ever being associated publicly with my sweet and ferocious and clever little girl.

The diagnostician agreed to let us wait until now to make a decision, but we never needed this much time.  We're not going to allow the evaluation.

My objectivity is clouded.  I realize that.  The best I can do as ask myself a question, and my answer convinces me that we're doing the right thing.  The question is this: Which mistake can I live with?  Which one would I be able to look Schuyler in the eye and apologize for making?  My decision to skip a test that might have helped her somehow, out of my fear of stigmatization for her?  Or a decision to to allow a well-intentioned stranger to hang that awful word around her neck?

It's a question with an easy answer, just this once.



Robert Rummel-Hudson is the father ten-year-old Schuyler and the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter (St. Martin's Press, 2008).  He is also a contributing essayist for My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities (PM Press, 2009). His work has appeared in Good Housekeeping and Wondertime.  Robert's adventures with Schuyler can also be found at his blog, Fighting Monsters with Rubber Swords.

 

21 comments:

  1. Rob, thank you for this important post. All too often I hear professionals say "Oh, it's just a label to open more doors for services." They don't have to live with the longer term ramificationsof those words and labels. I wonder, if they did, would they think twice about whether their tests and measures are either accurate or necessary. Do they change the way your child (or mine) needs to be educated and supported? Or do they merely, as you said, create another obstacle for them to overcome.
    I especially appreciate the simple yardstick you've given me to hold on to in the moments when I'm not sure if I'm doing the right thing for my son; "Which mistake can I live with?" Deceptive in its simplicity but so vital for parents to ask themselves. Thank you.

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  2. I'm proud that our school district refuses to use the R word by any of those with power. Unfortunately that is often not the case for others in our predicament. This was an excellent well-thought-out piece. Many thanks for expressing what most of us feel about that type of terminology.

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  3. I actually didn't realize the R word still exists in a clinical sense! You've taught me something. And if in I were in our position, I'm sure I'd have very similar feelings about someone labeling my child with it.
    What's interesting to me is that you're less concerned about how the word is used in society. My son has suffered from psychosis, and whenever I heard the term "psycho" or "psychotic" used in ignorant ways, it irked me. I wanted to lash out at these people and say, "You have NO IDEA what you're talking about. It's not something to joke about."
    I applaud your ability to let a very base use of the R word roll off. At the same time, when it's time to pick battles, I fight for my child first, every time.

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  4. Yes, yes! This is a really important message you have posted and I am sure it will be beneficial to many.
    We had a private assessment done for my son last year and the secondary diagnosis was 'possible MR.'
    It has been a miserable year trying to get my son the services he desperately needs and I can't help but wonder if that hint at the R word is what makes them continue to fail him...to not see the potential that I know he has.
    And I am also with you on your feelings toward the word by the public. I don't get my feathers too ruffled about it even though it stings. I figure most people that use it are ignorant and not worth the energy it would take me to get upset.

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  5. I too did not realise that it is still a word in circulation, it is not one we in Canada to describe any sort of disability any longer. Kids use it to be mean,m that's it.
    PS welcom to HP, glad you are here.

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  6. Does it change/lessen the services she will receive if you don't test? I totally agree with your, but am just curious. FYI- Long time follower and childless.

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  7. Robert Rummel-HudsonJanuary 9, 2010 at 6:22 PM

    Does it change/lessen the services she will receive if you don't test?
    In Schuyler's case, since her issues revolve mostly around communication, I don't think she's going to miss out on anything. I mean, she can't talk and she receives services that are specific to that issue. I know that for other families, the carrot/stick issues of more or fewer services is a pretty serious consideration.

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  8. Alleluia.
    You've said it all beautifully and, I would add, in a non-defensive manner which is very difficult to do.
    And welcome to Hopeful Parents!

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  9. I live outside Montreal Canada and we most definitely still use the term here. My son was diagnosed as mild to moderately mentally retarded this summer. It took me a few months to shake off the weight of the diagnosis. It took me about a month to come to terms with the newest label. Are my son's delays due to autism and/or mental retardation? Does it even matter? As a I homeschooler, I don't have the added worry of how the school will educate my son. As his mother, I know that regardless of all the abc's that continue to follow his name, he has a whole future of learning and living ahead of him

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  10. As I said in a comment on Rob's blog, I, too, fought the MR label for my son, who had a traumatic brain injury at age 2. I insisted that he be qualified as TBI and VI. But when he reached his mid-twenties, I realized I had done him a disservice. In Texas, there are few programs for adults with TBI, at least with an injury of such long standing, but there are many for adults with MR. So, even if you fight the label when your child is in school, because it might limit expectations and won't mean extra services, it might be a good idea to allow it as your child approaches the age of 18, as an adult won't qualify (at least in Texas) for MR programs if they haven't been diagnosed as MR before the age of 18.
    I personally don't understand the offensiveness of "mental retardation" when used as a medical diagnosis. It simply means slowed mental development. I think folks take offense because of the popular misuse of the term. As cms pointed out earlier, some of us find it very offensive when people use "psycho" or "psychotic" in ignorant ways, but does that mean that doctors should eliminate "psychotic" from their terminology? The medical community can't eliminate all medical terminology that is misappropriated by unthinking individuals. Should "spastic" be eliminated as a legitimate medical term just because people use "spazz" as an insult? I'm sure there are other examples, but I've only had one cup of coffee this morning.

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  11. Per your usual, Rob, well said.
    I esp like how you represent ignoring the ignorant. ditto Niksmom.
    Not exactly in the same vein, but sharing this post/blog:
    http://www.doitmyselfblog.com/2010/what-is-in-a-word-the-evolution-of-disability-language-continues/

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  12. I see the concern in letting a school district diagnostician evaluating for MR in such a complex child- special expertise and tests would be required to attain validity. An appropriately trained diagnostician would never use common IQ test such as Wechsler's or Stanford Binet's since these tests are created for verbal children. There are several good nonverbal IQ tests that could be used instead- these tests do not require receptive language to understand directions nor any expressive language to respond to test items. Some involve minimal motor responses for those with motor impairments. Moreover, the MR diagnosis can ONLY be assigned if adaptive skills- independent living skills used in everyday living- are also significantly delayed. The IQ score alone cannot lead to an MR diagnosis. Finally, it is possible to lose this diagnosis. For instance, it's not an uncommon scenario for someone with mild MR to eventually learn enough adaptive skills to no longer meet diagnostic criteria.

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  13. As a special educator I actually agree with Rob. I do not work in a public school so services for our students are rather different than in public schools. However, I will say this. It is very true in many schools (that I have worked in and even the one that I work in now) for professionals with the same power Rob writes about to "write" children with monsters off. I can not tell you how many times I have heard "He can't......because." When the fact of the matter is that with the right modifications and expectations he can.
    Now with that being said I am not sure how I feel about the R word. I do find it offensive simply because of the community I work in. I take it personally. However, I am not sure how many times we can redefine words for the purpose of changing the way someone views a person......the reality is their perception doesn't always change....just the word used. You are not hearing impaired you are hard of hearing....well it means the same thing. In the end the services you need don't change. Just your label. In the end you are still perceived to have a monster. The monster didn't even change. Nothing changed except what you called it. In ten years you can call it what you want....everyone will still have a negetive view of the monster. Just some thoughts.

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  14. glad to see you here Rob. Great post.

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  15. I live in Texas and am studying to become a teacher. The professor who taught Special Education told us that the r-word is no longer used professionally. I remember she provided the example of the American Association on Intellectual and Developmental Disabilities (AAIDD), formerly AAMR -- American Association of Mental Retardation. There must be a gap between what is being taught and the language still used in the field.
    If the test would put Schuyler in the same place but it was called something else, would you allow the testing? As a potential future Special Education teacher, I'm very interested in the opinions and experiences of my future students and their parents.

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  16. Rob,
    I have tried my best to embrace the word as it affects my daughter. When used as a noun, it is deragatory, when used as a verb, it is not.
    I do, however, understand what you are saying. Our "expert" experiences have been, well, retarded. The public schools have been slow and unresponsive. Fortunately this (calendar) year, things have changed a bit. We have a more experienced teacher and we have finally found a place that might be able to diagnose our daughter.
    In the hands of "experts" I would probably side with you...for the rest of the idiots out there...I just try to embrace the word and hope that I can beat them down with humor.
    chet

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