Susan Senator

Tonight I gave a brief talk at the Boston University School of Education, an event to mark the “Spread the Word to End the Word” campaign.  The End the Word campaign originated with Special Olympics and Best Buddies, is about raising awareness of how misuse of the word “retarded” is painful for people with developmental and intellectual disabilities.   This isn’t about PC.  This is about how name-calling hurts and is a bad thing.

What is worse, however, than calling someone a name is limiting someone based on a label.  Tonight, the speaker who followed me was Jack Kelly, a man in his sixties, who has Cerebral Palsy.  Jack is an avid football and hockey player, a coach, a teacher, and an all around good guy whose message to us was, “don’t tell people they can’t.”  Jack was lucky to have parents who were teachers, who knew what the human mind was capable of, and so they rode him hard to become successful.  Jack’s dad was a Notre Dame man, so football was really important to him.  So Jack and his dad tossed a football “every night,” said Jack, and that could not have been easy, with CP.  Jack’s mom worked hard with him on all of his academics, and he eventually graduated from Salem State University.

The point here, though, is not his credentials; it’s his moxie.  He grew up in a very different time than Nat.  No ADA, no IDEA.  He could only get what he pushed for.

He was told he could not play football, even though it was his (and his dad’s) favorite thing in the whole world.  Even though he knew how to play.  He went to doctor after doctor, all of whom said, “No, he shouldn’t play because he’ll get hurt.”

Jack’s mom said, “He could get hurt walking across the street!”

Finally they found a doc who said, “Let him play!”  And Jack played.  His teammates tied his pads on, and made sure they were tight.  He can’t remember today how often they won, but the point is, they played.  He now has taken his game to Special Olympics, where I’m sure he is kicking people into shape right and left!

Jack asked the audience at one point, why it was that parents get so devastated when they learn their child has a disability.  He pointed the question mostly at me and the other speaker, another mom (the others in the room were professors and students).  I got to thinking, because it was fascinating to me that he, as a son, did not understand why a mom or dad would feel anger and denial about something that has been a part of him his entire life.  He actually shouted the question at us.

Afterwards I sought him out.  I told him what I thought.  “It is probably because they’re terrified,” I said.  For most of us, it is not about vanity at all, or not getting what we thought we deserved out of life.  For the most part, we react so strongly to the news of our child’s disability because we are terrified for them.  We don’t want our child’s life to be hard.  We don’t want our child to suffer.  And disability seems to signify that to so many.  I won’t pretend it isn’t true.  Nat’s life is going to be and has been hard.  Just existing in a world you don’t easily comprehend can be hard; and when others have expectations of you that don’t make sense, that’s hard, too.

Nat’s life is also going to be hard for me, and for Ned, as we try to find him supports in his adulthood.  His life has been hard for his brothers, who have to live with the fact that they will never have a conversation about Little Big Planet or Mario or Myst or this teacher or that girl, with him.

There are so many things we can all imagine that we don’t get to do.  The list is exhaustive and exhausting.  You can just make shit up on the spot about what you don’t get, what you can’t do.   Or you can be like Jack Kelly and say, “Don’t tell me I can’t.”