The “R” Word. By Michael’s Friend JP
“Retard”, there, I said it. But I have not earned the right to say it. If you know anything about Michael Kennedy it’s that he has earned the right to say it. After years of being told what to do and having his rights limited or ignored, he has earned at least that much. Let me explain……
Michael and I went to a Syracuse Basketball game one day. We had a great time and saw an awesome game. As the crowd shuffled out, Michael and I hatched a scheme to try and get to the locker room to see the players. It seems like our discussions always lead us to some off the wall thought like that. Well, as we went passed a few levels of security received those kind smiles that people in wheelchairs sometimes get, we were getting pretty close. Then as we were right up to the locker room door a police officer stopped us and said, “What are you guys doing here?” Without hesitation, Michael looked up at the guy and said, “Hey, not my fault, I’m Retarded, ask him!” Ouch! My friend stiffed me. Right then and there I realized that Michael was just like any other guy I would hang out with. They are right there with you when you are planning and laughing, then gone at the first sign of adversity.
Michael and I met in the early 80’s when he lived in an institution. In this book he has described those years and all that happened. Mike and I started in a “Staff-Client” relationship. At that time, Michael was called a “Client”. He had been an Inmate, a Patient, and not a Client. He would go on to become a Consumer, a Participant, and a Stakeholder. In all those name changes you can see the attempt to change “our” perception of who Michael is; and in each case there is enough of a change to make “us” feel better. The real change needed to be in recognizing that Michael was not who “we” thought he was. Michael was just Michael, and that’s all he wanted to be.
Why had Michael and I been able to relate immediately? Maybe it was my job as the Volunteer/Recreation Coordinator, or the fact that I spent most of my childhood living in staff housing on the grounds of a state institution. I know it was not my formal training with disabilities. It certainly wasn’t because I was a normalization devotee. Actually, it might have been just the opposite. It was because Michael’s first words to me were more along the lines of, “Let’s get the hell out of here”; and that made sense, so we did.
From that day on we found that our time together helped both of us escape the institutional parts of our lives. Each time we talked I forgot I was working and Michael forgot a little more of the past. We did the typical things like going to sporting events, a trip to the park, or out to lunch. But the best times were and continue to be when we sit and reflect on the good and bad in both of our lives.
We’ve discussed world politics, state government, office gossip, our families and even our plans for retirement. I’ve watched as Michael moved out of the institution, got married, bought and then sold a house. (I’ll get back to the house in a minute) We’ve lamented over the costs of owning a vehicle and having to make the decision to keep the old one and dump money into it, or buy a new one and sign that five year loan document. On top of that piece of trauma, Michael has to also actively work at modifying his vehicle to meet his and Lori’s needs. I know it sounds like old news, but it is the truth; everything in Michael’s life takes extra work. Michael has had to be an advocate for himself and Lori at every turn.
He has had some help from “The System” yes, but isn’t that what it’s there for? It can’t make up for the harm “The System” caused him. Michael now gives back to others with disabilities and to “The System”. His ability to train new staff by telling them what it feels like, instead of what the policy says, is priceless. His knowledge of the ways to work within the confines of our government is a huge help to others with needs. People listen to Michael because he is a man who has one wheel (or foot for you walkers), in a dream oriented world, and the other wheel firmly planted in reality. A rare find, when it comes to anyone, disabled or not.
To get back to the house thing…. I want to express my joy in being with Michael the day he was cured. That’s right, on a bright sunny day right in the backyard of Michael’s home, he was no longer disabled. You see, despite all the therapy, testing and care that Mike received for many years; it only took one person to erase all the remnants of Michael’s disability. It all happened as Michael and I waited for a roofing contractor to show up and fix a badly leaking roof…he didn’t show. Michael was livid that this contractor made a promise to fix it and then did not show or call. That’s when I let mike know that he was cured. After years of wanting to be treated as a “normal” person with no special considerations or thoughts, he finally got what he wanted. Knowing that contractors consistently miss appointments and don’t keep homeowners updated, I was happy to tell Michael that this contractor did not see him as someone with a disability, but rather just another guy. He was treating Michael with the same level of disrespect given to most homeowners…..
Well, that’s a bit about me and Michael. We are friends first, colleagues second, and in the end just a couple of guys bust’n on each other….By the way Michael,
“Those retirement plans we talked about, I checked at my condo complex in Florida, the doorways are too narrow and they don’t allow ramps. So don’t try to visit me.”…..JP
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