Thursday, January 21, 2016

I Can't, In Fact, "Do Anything I Set My Mind To" (And That's OK)

I can’t “do anything I set my mind to.” Before you dismiss me as a cranky old cynic, hear me out. The idea that “you can do anything you set your mind to” is well intentioned. It’s a staple in kindergarten classrooms and it’s meant to make us feel good. Yet, this adage has always vaguely irked me. It has taken me many years to articulate just why, but as a 22-year-old aspiring adult who is not, in fact, good or even competent at everything, the words are finally coming to me. The insinuation that being able to do “anything” is a simple matter of “putting your mind to it” ignores the very real structural and institutional barriers that exist in the world. It suggests that being unable to do a task is merely a product of not trying hard enough. At the most basic level, the “you can do anything” line ignores the fact that we are human beings, not Barbie and Ken dolls who can flawlessly perform in any role. We all have strengths and weaknesses and that is okay. That seems to me a much better lesson to teach children.
While the phrase “you can do anything you set your mind to” is actually problematic for anyone, my disability has given me much more to ponder on the subject. Living with cerebral palsy, I know that society is especially tempted to tell me that I can achieve “anything”, so long as I grit my teeth and put my mind to it. Surely, you can walk a little further if you try, society says. The media loves the smiling child in the wheelchair who “never says can’t” and applauds her for “not giving up.” Well, I’m going to say something that may never get me on CNN, but is true nonetheless. The word “can’t” is important. The word “can’t” has power. The word “can’t” belongs to you. As a disabled person, this realization has not left me defeated, but instead, free to focus on that which I can do. Free to shape my life and my goals according to my needs. Free to accept that it is not necessary to be able “to do anything” so long as I am proud of the “something” I can do. Rejecting the notion that “I can do anything” has not irreparably damaged my self –esteem or trapped me in a pit of self-loathing. It has given me the tools to lead a happier life.
It has taught me to respect both the abilities and the limits of my disabled body. Knowing and accepting that sometimes, I really can’t “walk a little further” has given me the independence of my wheelchair that is not at all a symbol of failure, but of power. In my chair, I can zip around without fear of falling. I can decide where I’m going and where I am not. I can honor my tired muscles when they tell me they need a rest and save my energy for the “something I can do.” If I smile and set my mind to it, I cannot force the contracted muscles in my legs to make me ride a bike. Even if I mustered a gargantuan burst of courage, a muscle would still rupture and send my patella flying into the neighbor’s garden.  Understanding this has not only kept me out of the emergency room, but has also allowed me to invest my time in activities better suited for me. I shudder to think of all the excellent books and movies I would have missed if I were still hung up on riding that bike… and shudder even more at the image of collecting what once was my kneecap from among the tulips.
I will never hang on the monkey bars, climb a tree, or build a house. If I try harder and set my mind to it, that won’t change.  Thus, finding rewarding things to do within my body’s limits is an easy choice. A non-disabled woman, even one with the most determined spirit, knows that no amount of extraordinary courage will allow her to breathe underwater. It is not because she is not brave or she hasn’t tried hard enough. It is because she is a human being, born with lungs and not gills. Similarly, as a disabled woman, my body was simply not designed to do certain things. Much like the non-disabled woman cannot be expected to curl up in a ball and lament her inability to breathe underwater, I will not call myself a quitter for never climbing that tree. Measuring my achievements according to the standards of someone without a disability does about as much good as holding the non-disabled woman to the standards of a fish.
A story that quickly comes to mind is one about my high school career quiz. I was instructed to sit at a computer and answer questions about my interest in various tasks. I couldn’t help but laugh, as the quiz asked me to evaluate statements such as I would like to fight forest fires and I would like to be a stunt double. I mentioned the ridiculousness of these questions given that I can’t even tie my shoelaces, and was told not to worry about if I could do them, just to think about if I would enjoy them. Generally speaking, my ability to do something without serious bodily injury or a sense of dismal failure is inextricably linked with my level of enjoyment. More importantly, evaluating my interest in an unrealistic goal wastes time that could have been spent honing the skills required to reach a goal tailored to my needs. What I needed in that moment was not “you can do anything” but instead, “you can do something, and whatever that something may be, it is valuable and worthy.” I’m glad I found my way to that conclusion and realized that so many other opportunities to channel my talents exist, even if I can’t be a stunt double. I am also glad that the community isn’t counting on me to extinguish forest fires because that would just be frightening.
That being said, there are always boundaries to push. We have all done something in life that someone once believed we couldn’t. I, too, have accomplished things someone once said were not possible. Occasionally, that someone was me. For example, I never believed I would go away to college. To my own surprise, I graduated from a school nearly 900 miles away from home and managed a circus of personal care assistants to help with my daily needs. Indeed, history has been shaped by people doing things the world thought they couldn’t. I have no doubt that one day; a pioneer will brave a field once thought of as “not for people with disabilities.” But if that pioneer is sitting in a kindergarten class somewhere, she should be told of the battle before her. That big dreams and big change do not come easily. That we live in a world that tells disabled people they can do anything and paradoxically, with its staircases, inaccessible buses, and archaic prejudices makes it difficult to do even the things we must do to survive.
Sometimes, it’s important to push the boundary and strive for something you thought was impossible. Other times, it’s just as important to know that there are some things you can’t do. Having the power to determine the difference is a right that belongs to us all. Especially as disabled people, we are celebrated if “the word can’t is not in our vocabulary.” But here’s a secret: if it isn’t, it should be. You can’t “do anything you set your mind to.” But you can do something- and whatever it is will be amazing.

I "set my mind" to being a gymnast. I smiled a lot and was
very courageous. My handstand still didn't go so well. Damn.

(Image: Me on the floor, "trying to do a handstand." The result of
my attempt is me sprawled on the carpet, lying facedown in the style of a Life Alert commercial).

Thursday, January 14, 2016

My Take on The Mighty and Ethical Disability Media

By now, many of you have probably heard about the controversy surrounding the disability media site, The Mighty. The Mighty is a website that gathers real life stories related to disability to be shared in a manner similar to that of Buzzfeed. When The Mighty was started, it had potential to be a positive, cross-disability space. I have read some excellent posts through The Mighty and have even shared some of my pieces there. But lately, The Mighty has taken a turn for the worse, enabling the spread of stories that promote "inspiration porn" or sacrifice the dignity and privacy of their subjects for clicks. Recent editorial decisions, such as the publishing of articles that reveal intimate details about a young disabled man’s bowel problems, drew calls from many disabled people and allies for stricter guidelines and a serious conversation about media etiquette.
Unfortunately, many contributors who lent their insights for positive change were either ignored or met with extreme hostility by other readers. The editorial staff expressed some interest in hearing our concerns, but continued to allow for the submission of stories that perpetuate the attitudes with which many of us were concerned. Some of my friends and fellow bloggers were even kicked out of a Facebook group for contributors after posting proposed guidelines for future submissions. The silencing of our legitimate concerns shows great disrespect for a community The Mighty claims to serve.
Some readers have tried to portray the controversy as a “war between disabled adults and the parents of disabled children.” Some have accused us of an unwillingness to honor the parents’ perspective. Some have said we have “no right to comment on what they share about their children.” First of all, adults with disabilities are not out to get parents. We are not saying they cannot share their experiences or that those experiences do not matter. I know that my disability affects not just me, but everyone around me. I know that so often, the lives of disabled people and their loved ones or caregivers overlap. But that does not mean they can share the most intimate details of our lives unchecked. That does not mean they can write about a child’s toilet training struggles and reveal humiliating incidents about bowel accidents to the whole Internet. The desire to write a story that will get lots of “likes” does not trump the rights of people with disabilities to be treated with dignity. It is blasphemous to suggest that we have no right to comment on what is shared when these insensitive writers are literally sharing us. I have been disabled my entire life and my disability causes me to need help with virtually everything from bathing to putting on socks. Trips to the bathroom and even showers, events normally reserved for solitude, happen in front of people. I can tell you for certain that I wouldn’t want the details of these private moments to be available for public consumption. My story, my body, and my life belong to me. The thought of them becoming public property is terrifying.
Other pieces have promoted rhetoric that is harmful and frankly, dangerous. A recent submission titled “The Moment You Think Your Child’s A Burden” features a mother’s admission that she has thought of her disabled daughter as “a burden she will carry for the rest of her life.” I cannot tell a parent how to feel or control the emotions he or she experiences. But I know for certain that these thoughts and feelings should be addressed offline, not on a public forum. They especially have no place on a forum designed to advocate with and uplift others. As a disabled daughter, who in an ableist world still wrestles with the fear that I might be a burden to others, the mother’s words stung me in a deeply personal way. It was that article that cemented my decision to remove my writing from The Mighty, as it no longer represents a community I can be part of as an activist or a human being. I always tell writers, especially parents who write about their disabled children, to write about a person as though he or she will read the piece.

What will the people you wrote about feel when they read the story?
Would you want the same information published about you?
You love your child… but when he reads the article, will he know it?

I believe that most parents and caregivers have valuable perspectives, but those perspectives cannot be used to overpower or invalidate the experiences of disabled people themselves. Some parent bloggers will argue that their child will never be able to read or understand the article anyway. Even in a case where that is true, all people with disabilities including children deserve to have their humanity honored. Your child may never read the article in which you call him a burden or reveal your “secret” (a secret no longer) that you wish he were “normal.” But millions of other people will.

One of them may be a fragile seventh grade girl in a wheelchair who reads those words and worries that her parents wish she were “normal.”
One of them may be a newly disabled man asking if his life still has value, who needs more than anything for someone to tell him “yes.”
One may be the sibling of a disabled child who wonders if you really meant it when you said that people like her brother were a burden.
Think about those readers. What would you tell them?

Words are important. Words can connect and heal and empower. Words can unite and protect and nurture. But words, used carelessly, can forever damage those they describe. When you talk about disability, you talk about me. You talk about my friends. My past. My present. My future. You talk about people who are real.  You tell the world if society should value disabled lives or not. You help that fragile seventh grader grow to be proud or you fuel her feelings of shame and doubt. When you talk about disability, you talk about us. Don't be surprised if we talk back.

Tuesday, January 12, 2016

A Letter to Cerebral Palsy, From an Old Friend

This piece was originally featured on The Mighty in March 2015. I am re-posting here on my personal blog. I no longer wish to be associated with The Mighty in light of recent editorial decisions that allow for the publication of demeaning and undignified articles. I sit in solidarity with disabled people and their allies who condemn this kind of media exploitation.

Dear Cerebral Palsy,

We go back a long way, CP.  You might say you’re my life partner, my ride or die companion, or that Facebook friend with whom “It’s complicated.” Especially during the month of March, cerebral palsy awareness month, a lot will be written about you, and so much of it, by people who only think they know what life is like with you. So, as someone who really knows you, deeply and completely, I hope that anyone who wonders will read this and learn the truth about our adventures.
You don’t always make my life easy. Some days, my muscles feel really tight for no reason, and my joints feel like they are rusted in place. Because of you, moving is a task, and I imagine the way other people feel after they go to the gym is the way I often feel after walking a couple hundred feet or trying to sit up. But too frequently, people assume that everything about you is bad. That couldn’t be further from the truth. Even though you can be a pest, you have also brought so much good with you.

You have allowed me to see the world in a very important way, one that allows me to notice people and things that without you I may have overlooked. You have taught me to treat differences with reverence instead of fear. I shudder to think that without you, I may have said or done some of the ignorant things that are directed at me by those who do not understand the experience of disability. Without you, I may have been one of those people who block the accessible parking spot with a shopping cart without a second thought. I may have been one of those people who can only see wheelchairs as a tragedy instead of a sweet ride. I may have made terrible and dangerous assumptions about what it means to lead a valuable life, or I may have been a person who does not even know how to look at someone with a disability. I sure am lucky it did not turn out that way.

 A lot of people think that you “do not define me” or that they are giving me a big compliment by saying that “they don’t see you”. You are not my whole definition, but you are a piece of it, and without you I wouldn’t be the person I am today.  If people can’t see you, they can’t see me, because you are a part of me. It is not like there is a place where I start and you stop or you stop and I start. You have colored my every experience, fueled my quest to find every disabled character in all of media, and created a sense of humor that relies quite heavily on your antics. When I ponder the question “who am I?”, you are part of the answer. I am you and you are me, because it is impossible to say who I might have become without you.
Of course there are moments when I wish I didn't need so much help and moments when I really wish I could shower on my own. The idea of being able to go to the bathroom without anyone else there sure can be tempting. More people than I care to count are aware of the pattern on my underwear. The list of frustrations goes on. However, because you're in my life I have friends, doctors, nurses, personal care assistants, physical therapists, and so many other people who I never would have met otherwise. The loved ones you have brought onto my path are worth more than an infinite number of solitary showers. Not everyone you have introduced into my life has been kind, and you have made me aware of ugliness in the world that other people can blissfully ignore. But more so, you have shown me beauty, and helped me understand that though the world can be ugly, more often it is beautiful, and filled with people whose goodness is astounding.

I have been left out of things because of you, and because you're here there are offices and restaurants and schools and cute little boutiques that are off limits to me because they are not built for people in wheelchairs. However, I've learned not to be angry at you, because those places say so little about us and so much about the people who built them. Love builds places and spaces with room for everyone.  My life with you is neither 100% joy nor 100% struggle, but that is not the nature of life with a disability. That is the nature of life. You are not something to “battle” or “fight” or “suffer from”. You just are. That’s good enough for me.



Image: Me in my wheelchair in a green hat, sitting in front of a large mural. 

In Honor of Dustin Demmers, An Educator Who Taught Me To Be Proud of My Disability

This piece was originally written in April 2015 in honor of my teacher Dustin Demmers. I am re-posting it here as I am doing with all pieces featured on The Mighty, but not on my personal blog. The Mighty has made increasingly poor editorial decisions and published pieces that I and many others feel disrespect the dignity and privacy of people with disabilities. Thus, I no longer wish to be associated with The Mighty. This essay is of course dedicated with love to my friend Dustin Demmers.

Growing up with cerebral palsy, I was one of the only students with a disability in my mainstream school. This was not always an easy role to play. Being the student with extra needs means that some people will be perplexed by your mere presence in their classroom. I have long said though, that in a world where so many people can be patronizing, difficult, or downright unaccommodating, there are a special few that just “get it.” These people are the quiet champions who don’t need to be taught how to be “inclusive” because to them, doing so is second nature. Dustin Demmers is one of those people.
I was in Mr. Demmers’ journalism class as a tenth grader. In his class, we had to create a photojournalism project on a topic that was important to us. I chose to gather photos that demonstrated an empowering portrayal of people with disabilities. In that presentation, I finally had the opportunity—and the courage—to speak about my identity as a disabled person with my peers. Mr. Demmers’ class was the first one in which I felt comfortable sharing those perspectives, and I am forever grateful to him for creating an environment that made me feel proud of my disability. With Mr. Demmers’ encouragement, I also published an article about my life with a disability in my mock newspaper project at the end of the year, and again felt the joy that comes with having meaningful conversations through writing.
The confidence that he gave me to share my story has made me the activist and advocate I am today. Now, in college, I have spoken on numerous disability awareness panels, guest lectured in classes about disability, and shared my experiences regularly on my personal blog. Mr. Demmers helped me to see that my story was worth sharing. As I reflect on the hundreds of blog posts, poems, essays, and lectures that have come from that realization, I know that without him I may never have been brave enough to let so many people have a glimpse into my world on wheels.
This is where our story gets extra special. Nearly five years later, after many thoughtful conversations about everything from accessible transportation to navigating the home care system, Mr. Demmers’ son Ethan was diagnosed with Duchenne muscular dystrophy. In a twist of fate, we are now connected in a way I never anticipated. It is almost as though he knew that one day we would be part of the same “tribe” and that lives touched by disability would call on us both to be one of The Mighty.
He has blossomed into an incredible advocate for Ethan and a father who will teach his son to be proud. I like to think that I played some small part in preparing him for his journey, as he has undoubtedly prepared me for mine. We are on this path together now, and I couldn’t ask for better company.

My Wheelchair Is Freedom

This piece was originally written in March 2015. I am re-posting it here as I am doing with all posts not on my personal blog, but featured by The Mighty. I can no longer allow my work to be used by The Mighty in light of the site's increasing disregard for the voices of disabled writers and its consistent publishing of pieces that violate the privacy of disabled people. I join the community of disabled and non-disabled people who will not tolerate this anymore. This piece, however, was also featured on the blog What Do You Do Dear? last spring by my friend Mary Evelyn. Mary Evelyn and her family are awesome, and by all means, visit her blog if you want some good reading material. Thanks Mary Evelyn for being a great ally.

When your child is first diagnosed with a disability, I imagine it's very confusing. There are lots of signs and arrows. Lots of opinions. Lots of doctors. Lots of gadgets. Lots of people who think they know the next “right thing”. And somewhere in there, you're trying to do the right thing. It is certainly not a perfect science, and navigating can seem maze-like, impossible. But one of the easiest and best things you can do for your child is talk to other disabled people who have been living this way for years. They, not the doctors, are the real experts and know not only the challenges, but also the joys of living with a disability. With them come not only a trove of advice and resources but also a community that I think is pretty dang cool. When you realize that, it all gets a lot less scary, because if there are many signs and arrows, at least it is more fun when you have people to follow them with you… and laugh with you when you make a wrong turn or forget the meaning of one of the hundreds of acronyms that become part of your life with a disability. I am 22- year-old with cerebral palsy, and one of my favorite things to do is to show those parents, who are confused, scared, and lost in the face of this new diagnosis that they will be okay. That I live a good life in spite of and because of my disability. Their children will too, if given the chance.
A lot of you are probably wondering what things in my life have given me opportunities and enabled me to thrive. My answer may surprise you. One of the best things in my life, one that has allowed me to experience the world fully with a disability, is my wheelchair. Yep. You read that right. In the early days of being a parent of disabled child, everything in our culture tells us that the wheelchair is The Enemy. Even well-meaning doctors and therapists tend to talk about it in terms of “confinement”, and even though it is fairly obvious that I am not tied to my seat, the term “wheelchair-bound” is still very much in fashion, usually paired with a stick figure in a wheelchair designed to look mildly to moderately unhappy.  You are taught to be afraid of the wheelchair and that is not your fault.
Everywhere we look in society, we are bombarded with images of wheelchairs as things that hold people back. Your fears are just a product of what you've been told. Well, I'm telling you to forget what you've been told. I have had a wheelchair for all of my life and it has done anything but confine me. It is my freedom to move and to determine where I am going next. It has allowed me to zip around a college campus on my own, to go shopping, to go to museums, and to decide where I would like to be rather than let someone else decide for me.
Seeing a wheelchair as mobility and freedom instead of a loss takes a little time for some people. The transition from a stroller to a wheelchair, or walking to a wheelchair is one of the first formal acknowledgments that your child is “different”. Most little kids ride in strollers or walk beside their parents.  The day yours rides in a wheelchair means he or she is “different” in a real, concrete way, no longer in one that is hazy or hypothetical. But embracing the wheelchair as part of life, as something that is treated like legs instead of The Monster is one of the best things you can ever do. Please don't be afraid of something that has given me a chance to move along in the world and something that is so infused with the essence of my being. I don't know a life without it and my alternative, given my weak muscles, would be not moving at all. It is covered with buttons featuring snarky phrases, fun fur, pipe cleaners from camp crafts, and trinkets from various summer trips. When I ride in it, I am not confined. When I ride in it, I am free. Free, and rolling forward.
In the beginning, well-meaning practitioners will talk as though walking is The Golden Ticket. The ultimate prize. The mark of “overcoming”. Some of them will even pressure you to make your kid walk and stand at all costs, because in their eyes the wheelchair is defeat. Steps do not make one a whole person. The ability to stand and walk is not a mark of character and if your child does need a wheelchair, you have not failed. You have simply given them a different way to get around. Walking is nothing bad either. I still use my walker for short periods of exercise and I am glad I have the option to stand sometimes. The point of this post is not to vilify walking or imply that exercise is unimportant, but rather to take away some of the shame and implied “giving up” associated with wheelchairs. Just because I sat down doesn't mean I gave up.
My wheelchair has given me the option to do things I never could on my walker. I can cruise around campus without worrying about getting knocked over or losing my balance. I can keep up with people and stay beside them rather than lagging behind them. I can use my hands without the fear of falling and I can go places on my own, whereas if I were on my walker, I would need constant supervision. I don't have to feel exhausted all the time and I can use my energy to go to school, to spend time with my friends, and someday, to work rather than spend every last ounce of it to appear upright. That doesn't sound confining to me.
So, please don’t be sad about your child’s wheelchair. Be happy that he or she has a way to get around. Get excited about helping him or her pick the color, and don't be afraid, because there are spokes to be decorated, buttons to be purchased, and a kid ready to be set free. Help your children to be proud and to understand that wheelchairs are nothing to “overcome.” Attitudes, prejudice, and assumptions that deny them equality are the real barriers to overcome.

To my fellow “wheelies,” destined to enjoy the seated view… riding in a wheelchair six inches below the average eye level will not be easy. There are days when people will judge you or even think they know the value of your life based on what they believe a wheelchair represents. But none of that matters as long as you know the truth. Those people are the only ones will live in confinement, because they have allowed themselves to overlook your beauty. Ask yourself who is truly “bound,” and the answer will not be you.

Image: Me as a toddler in a ridiculous outfit on my purple walker. I am wearing sunglasses, a hat, a bowtie, teal shorts, a striped shirt and black shoes.

Image: Me and my sister as toddlers. She is hugging me as I sit in a teal stroller, smiling.

Image: Me as a young adult in my power wheelchair, posing beside a statue of Franklin Roosevelt in a wheelchair.