More Than Words

On Monday, New Jersey Gov. Chris Christie signed a piece of legislation replacing the term ‘mental retardation’ with ‘intellectual’ or ‘developmental’ disability. He is not the first governor to do so and it is clear he won’t be the last. So what? you may ask.

We made the decision early on to include a section on language in the First Conversation book (page 55) because language is more than the words we speak. It is the stuff we use to think with. And, because people think in language, the language we use always has the potential to affect the way we think about things.

Consider the case of Nick Marcellino, a 14-year-old student from Maryland. Nick’s younger sister, Rosa, has Down syndrome. He knows very well how she feels every time she is referred to as “retarded”, not only by other children, but in her own IEP and other official documentation of the educational system. As a result, he began his campaign, enlisted the help of the media, and eventually convinced the Maryland legislature to change all references to mental retardation in official state language to read ‘intellectual disability’.

And he didn’t stop there.

Nick then took his very personal advocacy effort to Washington in order to remove the term “mentally retarded” from the lexicon of the Federal government as well. Earlier this year, he testified in front of the United States Senate in support of S.2781 – a bill to change references to mental retardation in Federal law to ‘intellectual disability’, and to change references to mentally retarded people to ‘individuals with intellectual disabilities’. The bill, known as Rosa’s Law, was passed by the Senate two weeks ago.  The House will take up its version next month.

In November, Nick, Rosa, and the rest of the family will join us in Milwaukee to accept the 2010 Bethesda Voices Public Policy Award. I can’t wait to meet them.

Changing the words we use challenges us to think differently. It’s about respect. It’s about dignity.  And, at least for Nick Marcellino, it’s about the strength of a family.

David Morstad

Presume Competence

Picture a family in a local restaurant.  The waiter notices that one member of the group is a man with Down syndrome.  He takes orders from each person in turn and then asks, “And what would he like?”  There are curious looks all around the table as the man speaks up, “I can tell you myself.”

The waiter erroneously presumed incompetence.  Disrespectful? Yes.  Socially awkward?  You bet.  But there’s something deeper here – something  that leans squarely in the direction of human value.   

In the past week, two events have focused my attention on this issue.  First, I was approached about contributing to an article on the relationship between elective abortions and prenatal diagnoses of Down syndrome.  Second, I read a piece by the mother of an adult daughter with autism.  Her advice on how to act when meeting people with autism was threefold.  Be nice. Show respect.  Presume competence.  

Though seemingly unrelated, those two events  snapped together for me like puzzle pieces when I read the last two words:  Presume competence.   The book, First Conversation, is full of examples in which friends, medical staff and even church members seem to presume anything but competence (or worthiness) in the future life of a  person with a developmental disability.  Should we be surprised?

Consider this:  The American Journal of Medical Genetics reported as recently as 2005 that 81% of medical students believed they were “not getting any clinical training regarding individuals with intellectual disabilities”.  A year earlier, a survey  of obstetric fellows revealed that nearly half rated their training as “barely adequate or nonexistent”.   Careful not to lay too much blame on the medical community, this is a problem we all own.  Plus, there’s hope.  For proof, see anything by Brian Skotko, physician, researcher and writer.  

In the absence of our voice on their behalf, people with disabilities – on both sides of the birth canal – are at the mercy of ignorance.  Whether waiter, physician, pastor or neighbor,  God has called all of us into  a better First Conversation.  We needn’t wait for a diagnosis either.  We are called to presume far more than mere competence in people with disabilities. We are called to presume immeasurable value. 

David Morstad