A year and a half after his accident, Damon graduated from high school with his class. The standing-room-only auditorium was on its feet, cheering, clapping, crying as he, with much help, rose from his wheelchair and took a step with his right foot toward his diploma. His dad and a therapist physically moved Damon’s left foot for him, and advanced the high walker which held much of Damon’s body weight. Damon stepped again, shakily, awkwardly with the right and again the left was physically moved for him. Cameras flashed. The local news station took video for the 10:00 pm news. Air horns, not permitted on the stage, blasted from the stage as fellow students led the cheering for their classmate. Monumental. Miraculous. The brain-injured boy who was never supposed to survive, who, if he happened to survive, was never supposed to be more than a vegetable, had just stepped up to receive his diploma.
What are your goals, he was often asked in interviews, both before and after the graduation. Where is your focus? I want to walk was always his answer. For the six months prior to the graduation ceremony, Damon practiced his graduation “walk” at physical therapy and at home. For the three years after, as well. His team’s (all of us) main focus was in moving his legs, so much so that many other aspects of his treatments were neglected. We pushed him to walk at each therapy. His therapists wanted him to walk. He wanted to walk.
Recently, a few friends sent me a video of another boy, at another graduation, who stood up from his wheelchair to walk, with assistance from someone we can only guess to be a relative or a therapist or a girlfriend, across the stage to receive his diploma. I don’t know the backdrop to this guy’s story….but I decided it had to be similar. Maybe brain injury. Another huge accomplishment. My eyes filled.
But then, another friend directed me to a disability Facebook page where disabled members, their family, friends, and supporters were showing disgust toward this same video and the abled-bodied community’s reaction to the video, calling it inspiration porn. “Karen, help me out here,” my friend said. He was arguing with the members who were not hailing this as an accomplishment. How could they not see that? Why were they condemning this?
“What is inspiration porn?” I asked almost with ridicule. “He rose from his chair to walk! How can you condemn something without knowing the full story? You don’t know if he’s brain injured or has a debilitating disease, if he is becoming better or getting worse. It’s amazing that he’s attempting to walk.”
“What’s wrong with receiving a diploma in a wheelchair?” another member asked me. “He makes it seem as though there is something wrong with being in a wheelchair.”
“That’s not the point,” I answered from my fully able-bodied perch. “What’s wrong with him trying to walk?”
“They are cheering for the steps he’s taking, not the diploma he’s receiving,” said another.
I was angry, defensive, my claws were out. “YOU DON’T KNOW WHAT HE OVERCAME,” I typed, in all caps. “YOU HAVE NO RIGHT TO JUDGE.”
“Look how loud Karen is,” one man typed, referencing my capital letters. “Let’s all be loud like Karen.”
“What’s to overcome?” said another.
I did not understand. And I could not understand, because I am not disabled.
Inspiration porn, they explained, is the able-bodied-public’s goo-ing and gushing over only a disabled person’s “normal” physical and sometimes normal every-day accomplishments, while neglecting everything else. What an inspiration, we say, that he took a step! What an inspiration that he stood on his own! Let’s record it and put it on social media! Let’s get a million “likes”! (Ouch. I’ve done this with Damon. I paid more attention.)
“I achieved 3 graduate degrees after my spinal cord injury,” said a third wheelchair-bound-man, “and what do people concentrate on? My physical therapy and how inspiring it is to see me working so hard to try to regain what I physically lost. The inspiration is in my achievements after my accident,” the man tried to explain to me. “I earned 3 degrees, I married, I had a child. But, ‘ooo what an inspiration’ that I am working out trying to become more physically ‘normal’.”
I stopped talking. I switched my caps off. I started listening. Somewhere around this point in the conversation I had an *ahhhhh* moment. I’ll never fully get it but I think I somewhat got part of it right then and there. Was I pushing Damon more toward physical goals I have for him than toward life goals….. the wrong goals and perhaps toward failure?
I back pedaled a bit and said, at my son’s graduation we celebrated his life. We celebrated his return to school. We celebrated that we were told he would not be much of anything, but there he was taking a few right-footed steps on stage. Everyone cheered the moment his name was called.
But they cheered louder when he stood. And louder after that when his right foot stepped.
Shouldn’t it have been enough for us and for Damon that he was on stage with his classmates…..that he received his diploma that year? Were we wrong to take it a few steps further, with his right foot? We all appealed to the able-bodied bar for achievement at that minute, the able-bodied focus of physical healing as the all-important goal. It made the 10:00 o’clock, the 11:00 o’clock and the next day’s news. Would it have, if he was wheeled across the stage?
Please, before anyone argues, of course we are inspired by his will to live and his fight to come back to us and the miracle that is him….but at that moment…at that moment… we all cheered because he took a step, didn’t we?
What’s wrong with cheering that? I cannot and will not speak for any other disabled person’s situation. But in Damon’s case, I will offer this:
On that particular date, those who knew his story (most of the audience) were very touched and very excited and very emotional. His accident, trauma and recovery had all been made very public (by me) and everyone felt involved, and we cheered and cried and Damon had his moment. He wasn’t supposed to ever recover anything, and here he was. And it was awesome. Because we all knew the story. But when the videos were played to a larger audience, on TV, on social media…to an audience who just saw a disabled boy rise from a wheelchair to collect his diploma after a few steps and the crowd going crazy, he was diminished to an inspiration only because he walked, not because he lived and fought and went back to school. No one else knew his story. So that’s where this turns from that emotional moment to that inspirational porn. Disabled boy walks. That’s where the disabled community has the issues, I think. Because so many see the walk and not the full story.
Should Damon’s ultimate goal be to walk? Or, while never giving up trying to become physically stronger or trying to reach that walking accomplishment, should his ultimate goal be wheeling toward a future of independence, a job, a life defined as successful outside the framework of physical ability? Can Damon have a full and satisfying life if he never walks? If he’s unable to ever walk again, I sure as hell hope so.
Damon is surrounded by only abled-bodies. I really need to rethink this. Maybe he should hang with some successful disabled buddies….girls and guys. At first I said no, Damon’s friends are friends he hung out with before his accident (even though the majority don’t stop by much any more); will he feel weird hanging out with disabled people? Was I projecting my own feelings onto him? I feel queasy with my own thoughts.
In that *ahhhh* moment I realized that going forward I can’t be the one to teach him how to be successful with a disability because I, myself, don’t have a clue. And neither do the therapists or the doctors or the case workers who are not disabled themselves. We, the able-bodied, are biased toward normal every day physicality(s) as achievements. So I need to find the right people to show him the right way.
I need his focus to first and foremost be on his future. A happy, fulfilling life. I need to rethink our treatment plans and the words I use toward him and in front of him. I always tell people Damon will walk again, and I truly do believe that. And I’ll never give up on believing that. But perhaps walking should not be the goal. Maybe it’s a tool. A huge tool in my able-bodied mind, but just a tool. And many successful disabled people have risen above having to use that tool. And that is what is inspiring. Not just rising up to walk. Rising up while not being able to walk or while relearning to walk.
Damon has been told he is already an inspiration for so much for so many. It’s a word I hate, but a word he likes to hear. He’s an inspiration for his fight and his will and waking up with a smile every day. He’s an inspiration for having graduated high school and having gone to a few college classes. He’s an inspiration for his steps toward his goals, if not the steps, themselves. I know he can he be an inspiration for those that follow in his brain injury journey.
I will applaud his every accomplishment, whether it’s a test score or learning to bridge his back so getting his pants on is easier. He could have given up and he didn’t. He’s watched his friends go on with their lives, easily, while he works so hard to maintain the status quo. I can’t apologize that for me he’s my hero in my everyday life. But I get what they are saying.
I privately wrote to one of the men in that debate on that Facebook page and thanked him for taking the time to explain to me his idea of inspiration porn and helping me see through his eyes what I’m unable to see through my own. I heard him. I’m not pretending I understand totally. I still envision the same beautiful and happy future for Damon. But I see a different picture now. And maybe a different path. And maybe a different vehicle on that path.
March is Brain Injury Awareness Month. Please spread some love.