So this afternoon, a good friend of mine tagged me on Facebook as he ranted about something that our beloved George Takei celebrated on his own Facebook page. Apparently, a woman created for her child, and is now marketing a device that basically allows a person to strap a child or small person to their legs so that they may help them experience the sensation of being strapped to an able-bodied adult. Now as convoluted as that statement is, it should begin to demonstrate the total lack of understanding that this person has regarding the lived experiences of a person with a physical disability. Now before you call me an asshole, or someone who is insensitive to the experiences that people with disabilities face, I want you to think through the purpose of what this device is meant to do. If you need a reference, check out the link to the article from the Huffington Post.
On the surface, this device seems like a great idea. Why wouldn't you want a child, specifically one with cerebral palsy to experience what life would be like if they could walk themselves? I am sure the parent has spent years watching the child struggle, become frustrated and probably cry themselves to sleep on a nightly basis because the child cannot comprehend why their lives have to be so difficult. I am not taking any of this away from them. It has to be just awful for the parent to see their child suffer and literally have no way to solve their "problem" or offer comfort to a situation that they will never be able to change.
As a parent myself, I am constantly wiping tears or kissing "ouchies" that my children incur throughout their daily activities. I cringe when I hear the booming sound of a child falling, and my heart breaks to see my children's faces when they are full of tears. I recognize that these experiences barely inform me of the emotional hardships that parents of children with disabilities must go through during their first few years of life. So please, before you judge me harshly, continue reading.
Our world today has become very sensitive to issues of race, gender and sexuality. I am sure that most of our Facebook feeds are being constantly filled with stories of discrimination, intolerance and sometimes the heart touching moments in which these cases are challenged through love and advocacy. As an academic, I have found that I am often critical towards structures of power, and unfortunately how through narratives and stories, we find that these systems of oppression are often being reinforced. In fact, an area of research within my dissertation focuses on how these types of discourses interact and help us form not only our identities, but how we view the world. As a researcher, I study persons with disabilities, specifically physical disabilities. As a member of this community, I have a unique insight. In 2002, a single-car accident on a sleepy road in Mississippi left me paralyzed from effectively the waist down (T-10). I was 19. Up until that point, I didn't really know anybody with a visible physical disability. My school had a wing dedicated to persons with cognitive and developmental disabilities, but as far as I knew, there were no students with any sort of physical one. As an athlete, I didn't even know of the existence of sports like wheelchair basketybal or sledge hockey. The documentary style film Murderball had not been released and there was virtually no coverage of these sports on television. On top of all of this, I had never shared an experience or direct interaction with anybody in a chair.
I would like to say that I grew up in a small town, but I really didn't. I grew up in a suburb of St. Paul, MN and my graduating class was over 800 (660 walked). It was simply a lack of exposure, and nobody really talked about people with disabilities openly. When I got hurt, my first real encounter occurred when I returned to college and was immediately relocated to the "accessible" dorm. Here is where I met my friend Bill. Through this person, I learned a lot about what it meant to be a part of the disabled community and some of my greatest friends were met during this time. This is when my advocacy and interest into issues related to the disabled community began.
Fast forward 12 years, and I am completing a Ph.D. in Communication Studies where I study the discourses of ability and disability. Now if you have stuck with me this far, I encourage you to continue on this journey with me. I have talked with my colleagues on campus at lengths about how much I wanted to create a space in which I could rant about the injustices and plain lack of understanding that I experience on a daily basis when it comes to ability. After reading the above linked article, I decided I need to say something. As Kevin Smith states, "Every person has three basic needs: To eat. To fuck. And to be heard." Here is my space.
So as I read my friend's response, I thought a lot about what he brought up. And as I pull a quote from his post, he states,
". . ."oh that's so amazing and wonderful". No. It's not. If your kid has a disability, there are 100 million activities he or she can do. There's ONE he or she can't do…and it's WALK. This kind of shit is what makes kids with disabilities feel inadequate for the rest of their lives, because they feel like their value is measured by an ability they lack."
Now I agree and sorta slightly disagree with his assessment on this, but it allows me to talk a bit about the title of this post, and it is the discourse of ability.
Clearly the person who created this device, did so with the intent to allow their child and themselves additional freedom in life. Maybe they created this device as a mechanism to put their own frustration into something creative. But what they are also doing, is perpetuating the discourse of ability. So what is it exactly that I am talking about?
The discourse of ability is a web of meanings, understanding and perceptions on what abilities a person or group of people may or may not have based on their physical abilities. There is not one specific definition as each persons' perspective feeds into these discourses and ultimately changes how each individual involved then moves forward in the world. Each statement, each action leaves an impression that inadvertently effects any future action that a person may have. My friend hit it on the head when he stated that their are a large number of things that the child can still do, and very few that they actually cannot do. More specifically, there are many activities that can also be experienced in a similar manner, that although they might not do the same as an able-bodied person, they can still experience as a person with a physical disability. So for example, I cannot walk. I can try, and try, and try, but the signals that my brain sends to my legs becomes interrupted at around T8, and is completely stopped by T10. This means that I cannot wiggle my toes, let alone walk. But I do "push" places with friends or family and through language, equate this activity to walking.
In our world, we have a belief that a disability is something that is both negative, and unwanted by the individual. And indeed, some do feel this way. Why wouldn't they? Take a moment to look at our media. How many people with physical disabilities do you see on television? How many deaf, blind or "broken" people do you see star in main stream media? Those that you do are often portrayed in manners that are either sensational, or in some way victimized. Historically, we have seen people with disabilities portrayed as villains (Captain Hook), beggers (Oliver Twist) and placed in roles in which they are a burden to their families (Any novel from the 1800s). In movies, we see them celebrated for some unique and exceptional ability (Ray) or pitied for their down-trodden and difficult life (Million Dollar Baby). In fact, there are very few television shows that truly celebrate what makes them unique (Glee tries, but fails 1/2 the time). Yet, these representations inform us on who this particular community of people are and how we should interact with them.
Now not all interactions between able-bodied people and persons with disabilities are so misinformed. Oh Wait, yes - yes they are. Take for example a scenario:
Let's say you are an able-bodied person. If you are not, I promise you that you've experienced this. You are walking through a mall toward a set of double doors exiting to the outside. Ahead of you is a young man or woman in a chair carrying a couple of bags on their lap. You notice that they are doing an impressive job maneuvering between a small group of children with their parents and they about to approach a non-automatic door. What do you do?
If you are a decent human being, you probably speed up your pace and open the door for them right? It's a nice gesture. It helps them out, and you get to continue feeling like you are a caring or compassionate individual. I get this. Hell, a lot of the time I even appreciate this. But ask yourself why you do this. What assumptions do you make about the individual and their abilities? I am asking you this, not as a mechanism to make you feel bad, but one to make you think about how you view people in chairs. This act takes away their ability to ask for help and pushes against their ability to exercise their independence. Sure, it's a nice gesture, but what are the ramifications of this act? Do others see you do this? How does it impact them?
This act in itself is something that I have experienced more times than I can remember. In fact, some of my experiences are almost comical as I have had people sprint ahead of me, just so they could open the door. Although I am polite, it causes my disability to become salient and it tells me that you have already made a judgment on what I can, and cannot do. In fact, many of the "kind" acts that people have done for me have been done so under the guise of compassion or help. But in all of these cases, the benefits were far outweighed by the costs. These acts served as a reminder that my abilities were lesser and that my "need" of help were something that you decided and not me.
I am also constantly reminded of this when people feel the need to comment on "how strong my arms might be" or "how good I am at navigating uneven ground." All kind gestures that are used to feign a way to relate to my circumstance, but all uphold key tenets of the discourse of (dis)ability. So what are some of these basics that make up the discourse ability?
1. A disability is a negative attribute that a person either acquires or is born with.
2. Having a disability is unwanted and hinders a persons' ability to do everything an able-bodied person can do.
3. A persons' social value is based upon a persons' ability to achieve particular tasks.
4. People with disabilities need help accomplishing tasks that an able-bodied person can do unassisted.
5. Life is harder with a disability.
All of these statements are true. At least to a degree. I find having a disability can be hard. There are things that I cannot do. I often feel inadequate when I cannot do everything that my able-bodied friends do. Sometimes I even need help accomplishing mundane tasks. But within every scenario, I either need to figure out a solution or I need to ask for help. I do not need someone else to do that for me. I do not need to be judged on my abilities and I wish that we didn't do this to others. However, we do. I do. The discourse of ability is tied so tightly to how we perceive people, that it is almost impossible to get around this.
But this is also why I have such an issue with this type of product. I dislike the fact that this item perpetuates the fact that a child is going to be reinforced with the idea that they cannot do something, especially something that their parents want for them so desperately. This device indirectly reinforces the value of being able-bodied and in their young minds, this will become a capital-T truth for them. Would the results that the woman reported experiencing after using this device be different if an able-bodied child was strapped in? Doubtful. I know that my children would love to be strapped to mommy. It would be a blast as they love her, and love being close to her. In fact, this device seems to be more of a benefit for the parent, and the consequence of this type of device is that a child is going to constantly be reminded about the tenets of the discourse of ability, and potentially delay their ability to cope with how they are different and celebrate what makes them so unique.
So what do I recommend? Stop focusing specifically on what makes a person different, and start focusing on what makes them unique. Teach them to celebrate their abilities and stop indirectly telling them that they are not as capable or not as valued because they are not as able.
Thanks for reading and until next time,
Brian
Sorry that this was so long. It started to fall off at the end as it is 11pm and I am exhausted
