Friday, July 18, 2014

The Doctor Was Right About Me: Why We Need To Stop Shutting Those Who Do Not "Defy Medical Odds" Out

I'm not sure if you have seen the article floating around social media about Ben Jackson, a young man born with spastic cerebral palsy who has become an accomplished wrestler and a student at Northhampton Community College. Ben was recently the subject of a Gatorade commercial entitled “Ben Jackson-Never Finished.” Click here Sure, you don't see a wrestler with cerebral palsy every day. But this article is not making me "feel good” as Huffington Post suggests. I am not saying his accomplishments are not impressive, but what gives me the heebie-jeebies is the way the media is choosing to tell Jackson’s story.

The headline reads “Man with Spastic Cerebral Palsy Who Wasn’t Expected To Walk Is Now An Accomplished Athlete.” The article proceeds to celebrate his learning to walk as a victory over doctors, who were "proved wrong” and within this statement it is insinuated that "beating the odds" by becoming ambulatory is in part due to the triumph of courage or special character traits. Sometimes doctors are wrong, and sometimes it feels good to do something they said was out of reach. But unfortunately in cases like this, learning to walk is used as a blue ribbon, as if those who learn to walk possess some strength of character that is lacking in those who never do. By equating the fact that Jackson can now wrestle and play basketball in the context of “drive and fearlessness”, it is implied that the brave and the strong defy the prediction that they will not walk, while those who do in fact develop just as the doctor predicted are rarely seen in the media, because their bodies and their lives are not paired with the virtues of motivation and courage in society. People who are expected not to walk… and, gasp, don’t, are instead used as a scare tactic for what "could have been” if not for this “relentless drive."

We, the “non-ambulatory” are used to represent the kind of life that everyone fears. The kind of life that the big bad doctor warned you about, that Huffington Post will not write about in a heartwarming manner because to them we represent struggle without the feel-good victory. I do not walk, and I daresay that I have lived a good and full life although I will never ride a bike or play basketball on foot. If a child learns to walk who was not supposed to walk, then that is excellent. But a similar child whose diagnosis follows the predicted trajectory can also lead an excellent life if society grants him or her equality and stops making “walking” and “success” synonyms in our mental dictionaries. The child who never learns to walk may not become an accomplished wrestler, but other accomplishments that are just as valuable are more than possible. If your physical circumstances concur with those that the doctor predicted, you are not a failure. Behind the glimmer of the fairytale story society has constructed around disability, so that the non-disabled can perceive us in a way that makes them comfortable, there are thousands of people for whom life has progressed physically, just as the doctor predicted. What the fairytale doesn't tell you is that they can still be happy with those wheelchairs and aides and nurses and expensive equipment that so many have been taught are the unfortunate outcomes.

Being more severely disabled can be inconvenient. When you drive a powerchair, and can't walk independently, transportation is a lot more limited and a staircase is a definite “no”, not a maybe. But my life is no more or less important than someone who defied his or her doctor's predictions. Unfortunately, articles like the Ben Jackson story do nothing to help people realize that. The article says that Jackson was not expected to walk, and that the doctors even suggested that his mom “let him die” because he would "be a burden" and too “much to deal with”. The article does a great job of showing that Jackson is not a burden, but unfortunately does so by calculating his value based on the fact that he learned to walk and play basketball. Furthermore, there is no reassuring paragraph that other children with CP who do not learn to walk and may need a lifetime of assistance are not burdens either. The take away seems to be, “Ben Jackson is not a burden, but if he had not walked, he would have been.” That should strike you as rather problematic. We need to stop presenting people who do things in spite of medical predictions as “the winners” among disabled children.

The insinuation seems to be that if he had not “overcome” these physical “limits” the doctor predicted, his value would suddenly be stripped away. Some people can do more physically than others. That has nothing to do with character or the value of a person’s contributions. Imagine how that could impact a young disabled person trying to develop a sense of pride in the most vulnerable years of life, if even the media figures with certain “commercially appealing” disabilities are touted as superior because of their less “bleak” lives. If we really want to diversify media representation the right way, all kinds of disabilities need to be represented rather than split according to their “feel-good value” in others' eyes. Rather than putting those who “beat” the odds in the winner’s circle while tucking the more severely disabled into news articles about economic impact, loss, and family-destroying stress, we need to show the world the honest and accurate truth that if things happen just as the doctor predicted, the world is not over.

The value of a person does not disappear when it becomes clear that physical milestones are not to be. Of course, one is allowed to be confused, scared, and even angry when “what could have been” does not happen. It takes time to restructure your identity when you do not have the “typical” child your baby books have been advertising. But life will be so much easier and happier if in time, you let go of what could have been and celebrate what “is”. This can’t happen if even in our own community, the more mildly affected who walk and play basketball like Ben Jackson are extolled as fearless, driven, and by insinuation, good, while those who find themselves with more severe conditions are essentially hidden from the world, and assumed to be the burden that everyone fears. Walking, talking, feeding oneself, and playing sports are not character traits. They do not come automatically packaged with success, drive, heroism, and determination.

 If the press wants to tell the story of someone who proved the doctors wrong, then that's great, but present it as a fact, as a part of the story instead of as a victory contrasted with those our culture has declared developmental losers. Ben Jackson could still have been driven, fearless, and strong even if those doctors had been right. To all those children who did indeed develop as the doctors predicted, you are not invisible, you are not disappointing, you are not weak. You just are. You are alive, and therefore, you have a story worth hearing.

What makes a person valuable? What makes a person worth reading about, having in our schools and workplaces? What determines who society has a place for and who is better off to die because of a “bleak outcome?" If our deciding factors are who can walk, or play sports, or mark some physical feat off a chart, then we have wandered deep into dangerous waters. I’m waiting for the commercial featuring a child for whom medical circumstances went as predicted is still celebrated, like all people should be, as a champion. When that happens, I will buy a lot of Gatorade.

[Hey, Doc! You were right. I never walked. My CP is as severe as you said. But that's OK, because you being "right" doesn't mean that my life lost its value. Please tell other parents that it's OK if you are "right" too about things like walking and talking, because you never said it had to mean an unhappy life. And if you once thought it did, I hope you see now that you got that part wrong. Thanks for helping me. I love you.]
Image description: At the top is my sister standing in front of my green stroller, hugging me. I am seated in the stroller. We both have blonde curls and big smiles. At the bottom: My sister and I as infants in blue and green high chairs wearing party hats.