Susan's Blog

Tuesday, March 8, 2011

Don’t Tell Me I Can’t

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.”

7 comments

Susan –

From a Mom of two on the spectrum, one of whom has Cerebral Palsy, thank you for posting this. I would love if my son with CP were to some day play football. I would be absolutely mortified every time he took the field, but I would savor each moment that he played. 🙂

-Susie

— added by Susie Santos on Tuesday, March 8, 2011 at 10:18 pm

Susan,
Thank you so much for the kind words you gave in your blog about my speech last night. First of all it was an honor for me to speak to the students and everyone there and knowing that people enjoyed it makes me feel that what I have accomplished in my life can help others. It was a pleasure to meet you and I hope we will be meeting again soon. Tell Nat best of luck at basketball this weekend!

To Susie: Special Olympics has Flag Football in the Fall Season. We would love to have your son participate. Please contact Diane at diane.agganis@specialolympicsma.org for more information. Also, I will be glad to speak to you at anytime.

All my best,
Jack (Kelldog) Kelley 🙂

— added by Jack Kelley on Wednesday, March 9, 2011 at 12:22 pm

These are my thoughts only about why I was devestated when my son was diagnosed with autism: Not only did I realize how incredibly hard his life was going to be, and how much it would affect our family, but I felt then and still feel that he deserves more. He is fourteen; he does not even live in our house anymore. He is not with his family, or with his mom and dad. Why is my son any less deserving of the intangibles of life? having friends, playing sports; going to middle and high school. Studying for tests, school dances, girlfriends, planning for college. Attending college, graduations, his first job, getting married, my having grandchildren. Let’s be honest, these are things my son will never experience. And why? Why doesn’t he deserve a life where he will get to experience all of this? It is so much more complicated than throwing a football every night. Plus, the added worry of who will take care of him, and where will be live after I am gone. Will he end up homeless or with someone where he might potentially suffer some abuse? I could go on and on but won’t. My son is no less deserving of a full life full life (or the potential to have it) that anyone else gets.

— added by Sharon Jones on Wednesday, March 9, 2011 at 4:17 pm

Sharon, I have definitely had those thoughts myself. I’m most of the time not there anymore, but I do understand what you’re feeling. I’m sorry it’s so hard for you right now. I don’t think it will always be. I think eventually I came to realize that there was no “full life full life” as you call it; no one is immune to missing out on things. You are right, who will take care of our kids? But the truth is, “normal” people can also run into danger and misfortune, unfortunately. Some continue to live with aging parents. Some die young, some can’t have children, some don’t like the children they have. This life of ours is complicated, random, and often painful. So what I do now is try to keep my eye on the prize: happiness, wherever I can find it, whatever it looks like. Whether it’s being able to throw a football with your dad — what a gift! Or just being able to draw a breath in the morning… Hope you feel better soon.

— added by Susan Senator on Wednesday, March 9, 2011 at 4:32 pm

You’re right, of course, Susan. I really don’t allow myself to go to this place very often, it accomplishes nothing, plus Matthew’s days are actually pretty much happy and productive so I can’t ask for more than that but sometimes the anger and unfairness of it does creep in.

I was talking to some of my co-workers recently about Matthew and one sweet, sweet man that I worked with stated “well, as least you don’t ever have to worry about him running a meth lab in your garage.” We all burst out laughing at that one. Yes, you’re correct, I replied, that one thing I don’t have to worry about my son doing.

— added by Sharon Jones on Thursday, March 10, 2011 at 2:17 pm

Susan,

I want to thank you for your blogs. My son is younger than Nat, but your insight, and the ones of other moms with older children are an invaluable resource to me. Mr. Kelly’s question to you, and to all parents, made me stop and think. Your answer, just like Ms. Jones answer is every bit mine as well…all routed in love & fear. I just never stopped to think about the other side, what Gabe might be absorbing, or what Mr. Kelly did. You spend so much time & effort finding the right therapies, protocols, etc, etc to get them to be able to understand and play the game, and then fear letting go, because you just don’t know what will happen if they fall…
Come September, my son will be attending Middle School. It’s a big step for all of us, and I am so nervous. I have been preparing him for this for a while now (niether one of us transitions very well)…but I’ll have “Let him play” in the back of my beaten down mind, and I’ll have your very honest and raw emotions(which I completely relate to)your courage, and experiences to guide me as well. So, thank you for that.

— added by maribel danta on Friday, March 11, 2011 at 1:37 pm

Many lifetimes ago, I was a student in Danvers. I have Asperger’s, but back in ’76, no one knew what that was. Back in ’76, they plopped us all in a “resource room”. On crutches? In the resource room. Learning-disability? In the resource room. Visually-impaired. Off you go.
My most vivid childhood memory was being locked in a back room outside Pod A at the Smith School because I forgot my homework, and they thought I did it on purpose. Mr. Kelly did PT and OT with us. I am in a CP video with him.
But the old ARC campaign said it best: Label Jars, not people. No one knows what you can do but you. Period.

— added by Neil Papamechail on Wednesday, March 26, 2014 at 8:52 pm

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