Friday, May 23, 2014

Help Is Not a Dirty Word: Constructing Independence As Something Other Than "Never Depending on Anyone"

Society tells us from the time we are young that the best disabled people do not depend on anyone. "Being raised to not depend on anyone" is a societal hallmark of a disabled person that has “overcome” according to the standards of success. We are declared "successful" in the eyes of society when we don't need help anymore or we need the least help possible. While well intentioned, this logic is damaging and twisted. We need to change the way we look at disabilities and the way we treat the idea of needing help. While it is certainly a good thing to do as much as one possibly can without assistance, we have not accomplished anything as a society seeking to empower others by shaming those who do in fact need some help. The fact is, with or without a disability, everyone needs help sometimes and everyone, yes, all of us, depend on someone for something. There is no shame in that because it is part of the human experience to support each other. It is true that I still need a lot of help physically, from transferring out of my wheelchair to something as simple as using the bathroom. But to say I have tried less or succeeded less because I have not managed to stop needing help with these tasks does not mean I have failed in my efforts to be the best person I can be.
Why is it that we have created an image of the powerful and victorious disabled person as one who has never needed or no longer needs personal care assistance? The fact is that no amount of striving, cheery smiles, or superior moral character will change the fact that some of us will always need a personal care assistant, a nurse, or maybe just an extra set of hands to be there in order for us to survive. It's time to create a narrative where empowerment and assistance can peacefully coexist rather than one meaning the absence of the other. Instead of systems that push for the least number of care hours, the fewest pieces of equipment, and the fewest number of people with a home health aide as a marker of success, we need to start building a world where those who can live without physical assistance do so, and those who cannot, instead of being held to an unrealistic standard that does not reflect their reality, are taught that needing help is nothing shameful.
Those who do need assistance, instead of being told that they would be more successful if they were to join a group of people who do not need help, should be taught to manage their care and services in a way that empowers them and gives them the ability to make their own choices. There is also the reality that a black and white view of independence as “doing everything on your own” may lead to a quality of life that is more exhausting and more dangerous than it needs to be. Society gives us a sticker if we do everything on our own. In the media, "the good cripple" never has a personal assistant in sight, and gets dressed, bathed, and ready for school all on his own, even if doing so takes away every iota of his energy. But is the sticker really meaningful if this so-called “independence” means taking six hours to get dressed, being drenched in sweat soon after you wake up, and risking a fall every morning because society says doing it on your own is the only way to earn the right to say you tried your best?
The fact is, it is important to do as much as you can on your own, but not at the expense of your health and safety. We cannot put those who "do it all on their own” on a pedestal and shame those who can't, based on the false idea that all people can be measured using the same test. Independence does not look the same for everyone, nor should it. We should be teaching those who grow up disabled and those who become disabled later in life to set goals according to their individual situations, because life is not as simple as the need for assistance appearing and disappearing based on how hard we try.
Those who continue to need significant amounts of physical care do not need it because of a lack of effort or the triumph of laziness. They need it because it is appropriate for their situation. While it is nobody's dream to depend on someone else for butt-wiping duty, accepting the help does not mean the end of agency and power. In fact, if such help allows one to be safer, more efficient, and healthier, accepting it does not mean surrendering your power. It means claiming it. And to those who think not needing help with anything is the mark of being “raised right” with a disability, I encourage you to consider the potential this idea has to demean others. Just because I need help taking a shower or getting out of my bed, I assure you that my mother did not raise me with any less care than the other mothers around me. I was taught that it is okay to ask for help as long as you have tried your best. I was taught that the inability to tie my shoe does not stain my character or indicate that I have “given up” sooner than the other people with disabilities. I have chosen to proceed in life pouring my energy into those things that are realistic to do "on my own” and to be at peace with those tasks that require the help of another person. I refuse to be classified as a failure of courage or character for recognizing my needs. I refuse to risk breaking my arm getting out of bed because trying to do so "without help" and falling is seen as a superior display of empowerment compared to helping others learn how to help me.
We’ve all seen the popular cartoon featuring a monkey, a penguin, an elephant, a fish, and a dog, all of whom are cheerily informed that “for a fair selection, everybody has to take the same exam: please climb that tree.” This cartoon is most frequently used to highlight the absurdities of making sweeping generalizations about what qualifies as ability in our education system. But the same cartoon very well explains the unfair standard around which society constructs its idea of what it means to be "independent". To expect the same from the monkey and the goldfish would be preposterous, because climbing a tree is a much more difficult task for a goldfish.  Certainly we cannot declare the fish to be a slacker or an individual of lower moral character than the monkey because climbing the tree on his own without proper accommodation would be impossible. We would never think of insinuating that the fish's mother had not raised him to try hard enough because he cannot effortlessly scale the tree on his own.
Now imagine that climbing that tree is something more every day, like using the bathroom or putting on a T-shirt. Every person with a disability cannot be held to the same expectations in order to be declared worthy of praise. If a child who can put on his own T-shirt is treated as more successful, and by insinuation, more virtuous and driven than one who needs help, but directs his assistant with clarity and skill, than we have treated these two children no better than the monkey and the goldfish. Asking for help those not mean the death of independence. You can still be an independent person while accepting the assistance of others. Some of my closest friends need help eating, bathing, dressing, and transferring. I myself need help with many of these things. But I still regard us as independent people because we take control of our lives in our own way.
 In fact one could argue, even more so that others… Because we have to teach people exactly how to help us and have to think deeply about what is involved in tiny actions that most take for granted. We are forced to be creative and innovative when the world we live in seems surprised at our presence. We are forced to develop a trust that most people will never experience, to know ourselves right down to how much toothpaste we want on our toothbrushes, and to realize that we all need each other much sooner than most will be blessed with this realization. It is commonly assumed that we need one another's help at the beginning of life and at the end. But the truth is, we need it in the middle too, regardless of if or not we have a disability. Some of us just need it more visibly than others.

Help is not a dirty word. It does not mean you have given up, failed, or proven to be anything less than amazing. It means that you are brave enough to tell others how silly it is to ask a fish to climb a tree.
[Image shows a line of animals, a monkey, a penguin, an elephant, a fish and a dog. A thin man with a suit and a mustache sits at a desk, and a speech bubble reads: FOR A FAIR SELECTION, EVERYBODY HAS TO TAKE THE SAME EXAM-PLEASE CLIMB THAT TREE. The animals are in line on the grass in front of a large tree. Caption reads: OUR EDUCATION SYSTEM].