Follow by Email

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 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.

32 comments:

  1. spot on. Comparisons are always odious when it involves comparing people, ANY people. Comparing us crips to able bods is hideous. Who made able bods the measure? Able bods did. Say no more!!

    ReplyDelete
  2. Very well put, I completely agree. I also must say, that photo of you and your sister is so adorable.

    ReplyDelete
    Replies
    1. Thanks. Good old days in the Convaid stroller.

      Delete
  3. My daughter posted this yesterday and it is so true: "Comparison is the thief of joy." -Teddy Roosevelt.

    ReplyDelete
  4. I feel the same way about the phrase, "fighting cancer". It sets up winners and losers, and those who lose just didn't fight hard enough. Right?

    Yuck.

    ReplyDelete
    Replies
    1. Totally agree & trying to eliminate that language in reference to cancer too. There are certainly no "losers" & "winners" there either.

      Delete
  5. This was wonderfully said, thank you.

    ReplyDelete
  6. I loved this article. Thank you for sharing. I have a preschool-aged daughter with cerebral palsy and I blog weekly for a Cdn. parenting magazine about our story: http://www.todaysparent.com/blogs/special-needs-parenting/ I'm with you - I really don't care what the doctors say my daughter will or won't do. It's simply about her, not her in comparison to what anyone has said/expected from her. It's easy to get wrapped up into 'proving ourselves right and others wrong' but to me, it is such a pointless exercise because you miss what is happening right in front of you. And those are usually some pretty special moments.

    ReplyDelete
    Replies
    1. I definitely agree & I will check out your work. You seem like a great dad. All the best to your daughter.

      Delete
  7. Excellent, on point article! More of this, please!!!!

    ReplyDelete
  8. Awesome! I hate those "inspiration porn" articles and evenmore I hate when they are then used to sell products.

    ReplyDelete
  9. Thank you so much. I hate hearing about kids who "never gave up" or who "wouldn't take no for an answer" as if my child were somehow not fighting every day to do the things she does. She has a strength that kids who walk will never know.

    ReplyDelete
  10. Elizabeth, Thank you. Not sure who coined the term, but it has become rather handy in disability culture. And I agree... "wouldn't take no for an answer"- so YUCK! Everybody's just out there doing the best they can. All the best to your daughter!! We need a generation of strong, proud disabled women!

    ReplyDelete
  11. Thank you for this post, as a parent to a 7 year old severely disabled child, it really resonates with me and perfectly articulates that uneasy feeling I get when reading those against-the-odds stories.

    ReplyDelete
    Replies
    1. Hi,
      Thank you so much!!!! I'm glad this resonated with you. because I want nothing more than to help people. Much love to your son or daughter- here's to strong, proud, confident disabled people!

      Delete
  12. I was fist pumping and shouting YES!! through this entire post. The doctors were right about my son, too. I've gotten very uncomfortable with the fact that "walking" has become a big indicator of success or "beating your diagnosis" for both able bodied folks and the parents of children with special needs. The truth is, a child that can't walk didn't "lose" to their diagnosis, anymore than someone who has cancer "loses" if they don't survive. I think it's the word choice that bothers me more than anything because it implies something negative about the folks who don't prove the doctors wrong. As if it's due to lack of character. There is no winning or losing. Our bodies do what they can do. Saying a child "beat" their disability or "proved" the doctors wrong, implies that the child making these (very impressive) physical strides has a level of control that I just don't believe is there. My son is not "losing" to his disability. He is living with it and thriving within it to the best of his ability. For him, that means not walking. (PS: I saw that you found my blog, too! I was so excited because I had just read this post and been completely blown away. Glad you said hello!)

    ReplyDelete
    Replies
    1. Ahhhh thank you so much! I LOVE your blog- totally fangirling right now! Your son is the most beautiful little boy! Hope we can stay connected on here and keep writing. You inspire me in a good, non "inspiration porn" way- to keep advocating and celebrating life. Give Simeon a hug from me, one of his admirers! Lead on... you are a great mom & a great ally!

      Delete
    2. Thank you! I've loved reading through your posts. I'll follow on Bloglovin to stay connected. :)

      Delete
  13. Excellent essay! Very well put. Thank you.

    ReplyDelete
  14. Great post. Thank you for sharing it with us.

    Active for All

    ReplyDelete
  15. This comment has been removed by a blog administrator.

    ReplyDelete