The "R" Word

I consider myself a fairly informed parent of a special needs kid. In fact, I view my life with James as my profession, on top of just being his mom.  I try to keep up with the latest news and events.  We have a will, created a special needs trust for James, and have legally appointed guardians. James' week is full of much-needed therapy and he attends a small, loving school.  Of course, this involves constantly dealing with many bureaucracies, and I am humble enough to realize that luck figures just as prominently, if not more, than hard work and persistence. That said, after all these years, I was shocked to discover that James could be considered retarded.  Am I so out of touch with reality that I didn't realize that "retarded" was considered a accepted term?  I grew up with the small buses that kids called "tart carts."  We didn't have any special needs kids at our small school and the smaller buses were used in areas that didn't have many kids in attendance.  To me, the term was simply a slur.  I still hear myself use the term on occasion.  I check myself quickly.  I am over forty now and still hopelessly stupid!  One day when James was still stroller bound, I passed the brownstone around the corner where a bunch of special need adults live.  A plaque touted the residence's association with AHRC - the R standing for "retarded."  WOW. I was not shocked because I disliked the term, my view is call my son whatever the hell you want, just please approve his much needed services, therapy and schooling!  Rather, I was shocked because "retarded" was term so ACCEPTED that it was chiseled in a brick wall!
Years later, we now have a push to ban the usage of the word "retarded."  Normally, I am against ANY banning, the whole personal choice/responsibility/accountability/freedom thing (although I must confess to - at first begrudgingly and now openly - loving Bloomberg's cigarette ban).  I still hemmed and hawed about it, even mentioning how I was afraid the very prominent, very public educational/information push on this voluntary ban would take dollars away from actual programs, therapy or schooling for these needy kids (or perhaps away from RESEARCH, however unlikely).  Although this is another topic, I want to mention that  I find it maddening that one can call for a cure for AIDS, Alzheimer's, cancer, diabetes, but not autism. You just get a sad, patronizing look if you mention it aloud: oh desperate mom, don't you know there is no cure?
Anyway, it hit me.  After a ton of facebook posts about the topic, I now defend the ban.  This isn't just a good first step - it is an amazing one.  It is not about curtailing freedoms, it is an issue of respect for other human beings.  I saw an interview with a prominent comic were she defends her use of "retard"in her show.  If she said nothing, I would have defended her usage but hearing her rationalization -  that she knows adults with downs syndrome want to be treated normally, with all the associated jibes and ribbings - now I am appalled!  So the other 99.9% of her audience - who isn't hip to her inclusion of these guys with downs syndrome - will find it funny and cutting edge and brazen of her to use this hot-button word in her act.  And, most likely, a good portion will not only repeat the term, but now use it with renewed conviction.   Through your spoken words are an immediate slur to whomever you are describing, you are also insulting and alienating more in your heart.  When you see my sweet James having lunch in a restaurant - something we have worked years to attain - you will now think "retard."  I am not saying you wouldn't notice his odd behavior or you won't think "something's not right with that kid," rather you'll neatly label him and dismiss him as a person - all because of the continued use of this term.  There are so many schools who actively fight to keep special needs out.  There are so many places we can't go.  Life is isolating for a person with disabilities and acceptance is the first step.  And it's not simply a case of using a "preferred" term, well then what should you call that kid?  He's a person and his name is James.