Wednesday, June 26, 2013

Labels, Diagnoses, and Definitions

There are campaigns to remove the "R Word" from common language.  This word, for those who are not certain is, "retarded."  When I started in my career, it was a commonly used term.  It was medical or diagnostic when referring to a student's learning difficulties.  The grief parents endured once their child was diagnosed as "retarded" was the same as the grief that parents today go through when their child is diagnosed "severely delayed," "cognitively impaired," "developmentally delayed," "highly impacted by autism," or any of the numerous other diagnoses that say to a parent, your child is not "normal."  The word retarded was not a problem when used medically, the problem was, it became a derogatory word to indicate that someone was an idiot, useless, not worthy, beyond stupid, horrible, or any other negative thing.

Please understand, I am not asking that we keep the word in our vocabulary any more than I am advocating for any other derogatory word to refer to people or communities in a way that places one person higher than another.  We all have weaknesses things we see about ourself each time we look in the mirror and hope no one else sees it.  We all also have gifts, and if we let them, this is what people will see.  But that is another post, another time.

The real problem with the word "retarded" is that, even if we use other terms or phrases, people will still hear "retarded."  If I say to a parent that their student is Intellectually Disabled, they aren't hearing a different story.  Telling your friends that your child was diagnosed "severely delayed," doesn't mean they think it is okay or that the grief they feel for you is any less.

As I see it, one of the problems with the word "retarded" is that we simply don't understand it.  We really don't understand any of these phrases, terms, or diagnoses.  I had a professor during my undergraduate degree in Special Education who challenged us to define the, then prominently used diagnosis, Mental Retardation.  It was fascinating how it was used in books, articles, research, the medical community, the education system, the federal laws, and households and yet, no common definition existed.  It was one of the most memorable assignments and activities I have ever participated in, still.  States and local education units are still trying to do this for all the different labels we use to determine eligibility for services and supports.  You see, people can't be placed perfectly in boxes.  They don't fit labels perfectly.  It is not an exact science.  People are dynamic individuals, whether they are 6 months or 6 years or 60.

So why figure it out?  Because the definition a person has for the diagnosis, label, or category of service   drives the grief, celebration, inclusion, and education of that person.  If the teacher and the parents can talk honestly about what that child's "label" means to them now and in the future, they can then, and only then, work as a true team to support, encourage, and educate that child.  I am not perfect, but I try to have this conversation with each parent, teacher, and paraprofessional that works with a child.  I have more work to do in this area, but I am trying.

To that end, here is my attempt at a definition in regards to the identification and education of children with the diagnosis of what is now referred to as Intellectual Disability.

Intellectual Disability is an impairment in functioning in a social, academic, home, communal and vocational environment due to a neuro-deficit that may be caused by a variety of physical problems or traumas.  Intellectual Disability is a changing, or dynamic, condition and therefore, the settings the individual is in should not limit or restrict growth or exposure to ideas.  Any program or training for the individual should be written for their current needs with the belief that they can and will meet or exceed expectations.

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