So, how does a kid from 223 Queen Street Northumberland, Pennsylvania, wind up at 1600 Pennsylvania Avenue, Washington, DC to witness President Obama sign the Stem Cell Executive Order and Scientific Integrity Presidential Memorandum? I've been asking myself that question since I received the email invitation on Friday evening. You see, I'm that kid (pictured at left in 2007 wearing Superman dog tag). And here is my answer.
I was paralyzed in a car vs. bike accident on May 26, 1998. A few years later I called Patricia Morton at Rutgers University to talk about the Quest for the Cure program. Patricia is friends with Sue Pendleton, who was scheduled to testify at an upcoming Senate Judiciary Committee hearing about therapeutic cloning. But Sue developed an intestinal ailment at the last minute and wasn't able to go, so she called Patricia in an attempt to find a replacement. Patricia recommended me, Sue called me, I said, "Yes." Then Tricia Brooks called me, and I would like to say the rest is herstory.
Among the people I met at that hearing in January, 2003, was Alta Charo, a professor of law and bioethics at the University of Wisconsin. Fast-forward to Friday evening, March 6, which is when I received the email from Alta inviting me to the ceremony that President Obama held this morning.
It probably sounds like a cliché to say it was "unbelievable", "awesome" or "amazing", but, being that I teach high school, the only other way I can think to describe my experience is to say, "OMG!"
I arrived at the East Gate of the White House at 10:45 a.m., gave my driver's license to the Uniformed Secret Service Agent, had my car checked by another Secret Service Agent and his dog, drove through a few more gates, and found a place to park. Then I rolled through another gate and was escorted by another Secret Service Agent into the White House.
Another Secret Service Agent showed me to a waiting room, where I found my friend Don Reed, his wife and their son, Roman, who also has a spinal cord injury. We took a few pictures, I texted and called my mom (shouldn't everyone be texted or called from the White House?), and at 11:30 we were led to the 2nd floor.
A group was gathering in the corridor, so while we waited to be sent into the East Room, where the signing and ceremony were to take place, I talked to old friends like Michael Manganiello, Alta, and Kevin Wilson.
When the moment came and we went into the East Room I was surprised that we patients were not led up onto the stage, where a lonely podium and microphone waited. I sat on the aisle, as I'd been instructed to do, about 10 rows back from the stage. Seats around me filled up. There were more cameras with bigger lenses than I've ever seen. Nancy Pelosi was there. Dianne Feinstein and Orin Hatch were there. So was Dianna DeGette. And Jim Langevin. Senators and members of the House of Representatives I'd met over the years of making trips to Capitol Hill for press conferences, committee hearings and rallies in support of stem cell research.
Six years of making trips to Capitol Hill. Six years of fighting religion and ideology. Almost eleven years of sitting in a wheelchair. There were only two people I wished could be there for this moment. Chris and Dana.
A voice that seemed to come from nowhere said, "The program will begin in two minutes." Then the voice said, "Ladies and gentlemen, the President of the United States." President Obama walked onto the stage and took his place behind the podium. A number of doctors stood behind and to the right of him. And when President Obama began his remarks, I couldn't believe that I was actually in the room with him.
I listened to what the president said. I was struck by how simple, yet meaningful, his words were. I was moved by the conviction with which he spoke. By the thought he had given to the action he would take. And when he finished speaking and sat down at the desk where he would sign his Executive Order and Presidential Memorandum, I could only see the people who were seated in front of me. Yet I knew that I was witnessing an event I will never forget.
As President Obama made his way out of the East Room, he mingled and shook hands with those who were seated in the front rows. I wasn't up that close, but I had taken something I wanted to pass along to the president. I reached into my bag and pulled out two Superman dog tags – one for Sasha, one for Milia. And I made my way up the aisle toward the president, calling to him as I went. Someone helped me to get his attention, and the man who had just used his left hand to sign his name on his Order and Memorandum, stretched out his right one to meet mine. "For Sasha and Milia", I said, "from the Christopher and Dana Reeve Foundation."