For the next 36 days (from March 28 to May 2), I will be contacting and writing about 36 extraordinary members of the House of Representatives. They are all extraordinary in that they form the bipartisan Congressional Spina Bifida Caucus, and so they strive to address the unique needs of the spina bifida community in the U.S. My “mission” is to write to them, and urge them to make quality of life, and not solely prevention, a priority on their agenda in Congress. It has come to my attention that education about spina bifida is critical during all the stages of development– from planning to prevent spina bifida through the consumption of folic acid, to comprehensive education about spina bifida once it is diagnosed. We need to educate, starting with the physicians and other healthcare providers, so that they will be made aware of the potential that each child with spina bifida possesses.
If you had known me as a child, you would have picked up immediately on the fact that words are my life. In my oft-uncertain, tumultuous world that is living with spina bifida, words have been the single most important weapon in my arsenal of defense mechanisms. Being able to express myself fluently also provides me with a much-needed cathartic release. It’s as if once the words are out there, I can breathe easily because I no longer feel the weight of the world pressing against me.
There are, no doubt, at least a few people who would dare to question the usefulness of a thesaurus. You might ask yourself, “What’s the point of listing a word, and the listing twenty other words that mean exactly the same thing?
Words matter. What’s more, it matters how you use them. Today I read a Facebook status on one of the Congresspeople I have already profiled on my blog. I will not say who it was, even though Facebook pages are pretty public.
Here’s what it said:
“On way 2 Coconut Grove’s Shake A Leg program: teach sailing 2 disabled young ppl. Thnx 2 Harry (founder)+volunteers 4 helping kids everyday!”
Sorry, I still can’t read that without flinching a little.
I decided I had to react in a dignified, professional way, but react nonetheless. Here’s the exchange between her other Facebook “friends” and me that followed:
Me: I’m SURE you meant “people WITH DISABILITIES,” not “disabled.”
Person 1: Semantics aside 😉 It’s great to see you out in the community on a Sunday! P.S. I benefited from the pervious program at that location: The Elizabeth Varrick Gym back in the early 80’s
Me: Semantics contribute to the already distorted notions that society has about people with physical, developmental, or emotional challenges. It is in semantics that biases are born.
Person 2: I’m sure she did ty face book police our kids are glad 2 have her support Will you be there too? [Note: Spelling mistakes were left alone to preserve the integrity of these people’s intellect.]
Person 1: When we become overly pedantic, we risk alienating the very people we try to educate.
Me: I am not being “overly pedantic.” I am simply a person living with a physical challenge who is trying to educate our legislators, both Dems and Reps, about how they can best represent us. If we are to be represented by them, there is the possibility that we could be misrepresented by them as well. As for me, I will not let anyone call me “disabled.” That is for broken-down cars. This is my only intention in commenting on that.
Person 3: I believe that political correctness can be a form of linguistic fascism, and it sends shivers down the spine of my generation who went to war against fascism.
Even though I actually made an effort to disguise this person’s identity, it isn’t impossible to figure out. This person has a Facebook page (a friend page, not a fan page) and is one of the members I have already profiled. I just wanted you all to see that I am above mudslinging. My point in sharing this discussion with you is to make the point that, with our nation’s current mentality towards people living with physical or mental challenges, I sincerely fear for where this state of mind will lead us next. I would hate to think that these practices in “semantics” will lead to job discrimination or the treatment of adults with a challenge as children.
It’s so incredibly unfair that even our legislators can get away with referring to us in the same manner one would refer to a broken-down vehicle. Moral of the story: words matter, and what’s more, words can hurt. I shall call this our “food for thought” for tonight.
If you thought reading Rep. Mark Kirk’s caucus résumé made your head spin, just wait till you read about Rep. Dan Burton of Indiana! Currently serving his fourteenth term in Congress, Rep. Burton claims membership in literally dozens of caucuses, including the Autism Caucus. This is a very personal issue for him, as his grandson has autism.
In addition to that, Rep. Burton is on the Bipartisan Disabilities Caucus, is part of the Cancer Care Working Group, the Bipartisan Cerebral Palsy [Caucus?], the Human Rights Caucus, the Public Service Caucus, and, my personal favorite, the French Caucus. (That was my foreign language in high school and college!)
But seriously, you should check out the entire list. It’s unbelievable. I have no clue how the man has time for anything else. The good news is that the Congressional Spina Bifida Caucus is actually among those listed on this site, as well as on his own Web site. This is truly refreshing for me, and it makes my job a heck of a lot easier to know that he is still an active member.
Congressman Burton served in the Armed Forces, as well.
Guess what I’m excited about now? I have an appointment tomorrow with the allergist! YAY. It’s about time. Let’s see if she can give me a potion or two for this nose of mine.
Good night, and here’s to breathing through your nose!
**P.S. After publishing, someone I follow on Twitter retweeted an article published on Amnesty International’s Web site. It sent chills down my spine! You’ll see why.