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
Brian, my eyes are opened by your commentary here. Throughout the course of my life I've been "other" plenty of times - a person in poverty, a person with a mental illness, a person who identifies as bisexual, et cetera..... My latest evolution of learning about "other" has been working, for the last eight years, with people with developmental disabilities. My experience has been primarily with people who have cerebral palsy, ranging from people with mild to profound cognitive delays and with mild to profound physical disabilities. They need varying degrees of care, which is determined on a case-by-case basis. Feel free to school me on my language where it is lacking.
ReplyDeleteAbsolutely, caring for these individuals is about working with their abilities but the reality is, it is also about accomodating what they can't do. If they can't push their own chair, I do it for them. Without drawing attention to it. I sort of think of it as me working in the background to take care of the things they can't do, so that on the surface they can do the things they can do. It is especially important to help them make the choices they can make. Now they live in a different reality than you do. You have all of your cognitive faculties, and comparatively speaking you have more physical abilities.
So this is where I run into issues with you, and with our other friends in chairs. My reality is about taking care of other folks in chairs, other folks who need a great deal more help - and do not always have the capacity to be able to ask for it - than you do. When I am caring for them, I do my best to make it seamless - to not draw attention to what they can't do, but just simply faciliate those particular actions and focus, with the resident, on the choices they can make and the actions they can do.
From that mindset, when I see you, or guy-in-a-chair-I've-never-met, heading for a door without a push-button, you bet I am opening that door for you. Absolutely. It is a deeply engrained habit. I'm doing it because it takes two seconds of my life and it eases the struggle of another individual. As I consider it, I feel like the person shouldn't have to ask. People who can easily open doors should open doors for folks who can't easily open doors. I open the door and wait for older folks who are slowly moving through a walking life too. You may see it that I'm taking away your choice to ask, and I'd like to hear your thoughts on this. I just feel that it is considerate to help your fellow man if you can. At 25 I would have bristled at a man opening a door for me out of chivalry. Now, I smile and say thank you. Why? Because I believe that he is doing it with good intentions. I know it is not exactly the same thing - but since we are talking about opening doors...
So this UpSee thing - I was surprised to see such a vehement response to it on FB.... As a person who takes care of folks with developmental disabilities, I am a huge fan of adaptive equipment. If the only thing that stands between a person feeding themselves or not is a specialized plate and spoon, give them that adaptive equipment. Absolutely. If this UpSee thing has any benefits aside from the emotional sensation of walking - for example, if it allows for vestibular stimulation which lays down pathways the brain might not otherwise get in a time-sensitive window, or promotes weight-bearing, then I am all for it. I can see the idea of not setting the ideal at being a person who walks. I don't want to set anyone up for failure and a sense of inadequacy. But if it is a device that can help maximize the potential of a given body, then I don't see what the problem is with having it available. So, that's the two cents from my perspective. But I am open to learning and growing, I am eager to hear other perspectives.
Hey Sarah,
ReplyDeleteLong time no chat. I hope things are well with you. I still owe you a phone call.
I wanted to start my reply by thanking you for taking the time to read through what I said and responding to it. First, I can definitely appreciate your perspective and the work that you are doing. I am definitely speaking from a privileged perspective here as although I would be classified as having a “severe” disability, I do have the ability to exist with virtually 100% independence. I also recognize that there are quite a few people out there who do not have this ability and due to various cognitive, developmental and physical disabilities, rely on able-bodied people, generally care-takers, medical personnel and/or family members to function within their everyday lives. My goal for this commentary was not necessarily to vehemently strike down this device as a horrible adaptive tool, but rather complicate the praise it was getting by displaying another point of view and to introduce other considerations that are clearly not being considered within the article presented.
Now that being said, on a personal level, I do not like the idea of this device. As Billy pointed out, it reinforces the idea that being able is being normal. Our world so desperately tries to hold onto celebrating normative traits and behaviors, that those that are different are often marginalized. What people do not consider all that often is that this marginalization happens with good intent. In your example, you said you would open the door for that person because it only takes you two seconds, and it eases the struggle of the other person. I applaud and condemn this action. I know you Sarah, you are an incredibly sweet and compassionate person whose intentions are well placed. However, the simple fact that you see them as someone who may be struggling situates them as lesser. In that moment, they are not as able as someone who may be able-bodied and walking through that group with a handful of bags, and about to approach the door.
I think I can relate this example to your own of being 25 and having a man opening the door because of chivalry, but I may be stretching a little more here. If we were to look at the reasoning behind what would make you upset in this situation, it would probably be because they see you as someone in need that they can help or assist. They see your body, your gender and immediately read that as something that is not as capable as themselves. That assessment takes away from your power and it’s almost demeaning. We can take into account their perspective as they frame it to be simply a “nice thing to do,” but that doesn’t change what they are doing. Intentionality does not change marginalization, it just makes us feel better about it. I don’t think the unsolicited help being offered a person with a disability as any different.
DeleteNow, I should articulate that I am not insisting that you should stop helping people with a disability. As you develop relationships with people, you learn their needs, desires, etc. In situations in which you’ve worked with people, have had conversations or have been able to assess their abilities, then you are a very different position then when you approach a stranger. What I do wish would happen though is for the assumptions of people’s abilities to stop being made based on their visible appearance, and their classifications.
My response to this article however, was based on what ideas it reinforced not only for the child, but how their parents framed their own children. We need to stop seeing disabilities as a negative trait, and start looking at it as a different one. Instead of being afraid or cautious of difference, we should start celebrating it. The final part of your comment, you mentioned the introduction of vestibular stimulation, which does indeed lay down new pathways. Recently, with my own son, I have learned a little about this. I don’t know if this is the only way to create vestibular movement with a child that has a physical disability. I feel like there are definitely other options that could create the same sort of results without putting them on display for everyone to see. This in itself is something we could discuss, as it also informs others in a way that reinforces a negative aspect of the discourse of ability and perpetuates misunderstandings of a persons’ ability within future interactions that they may have with others (I am not sure if you follow that line of thought, so let me know if I need to explain that). Bearing weight is also very important, but again, not necessarily in a space where others will stare.
Hopefully, I was able to respond to your comment without silencing your perspective. I do respect you very much as a person, and I would hate to think that you might have read my response as something negative or overly privileged.
A very thoughtful reply. I have several thoughts... "Reinforcing the idea that being able is normal..." Caring for folks with developmentally disabled folks is quite fascinating. The rules change a bit, and over time I think that if we treated each other, out in the world, the way we should treat folks in group homes, the world might be a better place. For example, if we took the time to learn about a persons needs/wants/desires before we write them off as an asshole or difficult or whatever...
DeleteAgain, caring for these folks gives me a different perspective than you, but I think we are really getting at the same root issue from two different experiences. Lets talk orthotics. While different from adaptive equipment, the premise is the same. A given body does not work "the way it's supposed to" so you use this object and it helps the body gain or keep function. I used to care for a dude who was very, very windswept. We used to have to put him in this chest-to-foot hard plastic brace every night. He HATED it. I don't blame him, I'm sure it was uncomfortable at the least. To me, it seemed tortuous. Where is the line? Somewhere before that I think. Well, for folks who are under guardianship, they are at the mercy of others. The alternative to the brace was an invasive and dangerous spinal surgery. They wanted a less invasive treatment, which was arguably tortuous. So, again, where is the line? Do you simply document the refusal? In theory, yes. In practice, the guardian has the legal right to make the decision, so it goes on. And therefore you encourage the resident to do what mom and dad want them to do. If you see it from a more resident-minded perspective, you are repeatedly counseled by managment to see it from the guardian's perspective. It can wind up being a "performance issue" that will lead to termination.
I had the same conflict in lesser forms time and time again - someone doesn't want to do their exercises, someone doesn't want to take milk of magnesia. These are the ethical dilemmas that you ride out every day. Food for thought. So do they have the right to refuse or not? Because if you say they can refuse every med they don't like the taste of, every exercise that uses muscles they don't naturally use, you wind up with a very short life expectancy and a medically difficult life (status seizures for example in the case of someone who refuses seizure meds, bowel impaction in the case of milk of magnesia)...
It's an ethical nightmare in my opinion and that's how I arrive at trying to have a sense of grace with them, a bit of the use of kid gloves, and Jesus don't do anything that makes them admit a need or a disability or a struggle, just take care of the hard parts and let them focus on ability.
I guess what I'm saying is that the battles of those individuals are entirely different than the battles of people like yourself who are relatively independent and "of sound mind." That doesn't even begin to get into folks who have psychiatric diagnoses in addition to or instead of cognitive and physical ones. Maybe the rules are different for them, or maybe the rules should be different out here in the real world. I spent years developing relationships with these folks and learning the finer points of what motivates them, what makes them happy, so I could play that fine line of helping them maintain a good quantity and quality of life.
How the hell do you do that with a stranger who may or may not need help with a door? My view, up to this point, has been to just be nice and open the door. Your view seems to be to let them ask if they need the help. In my frame of reference, with so many folks who can't ask, you can see where the difference of opinion comes from. And I think this is a conversation we can have, and are having, openly and honestly and with respect for one another.
Above you said "...same sort of results without putting them on display for everyone to see... it also informs others in a way that reinforces a negative aspect of the discourse of ability and perpetuates misunderstandings of a persons’ ability within future interactions that they may have with others (I am not sure if you follow that line of thought, so let me know if I need to explain that)."
DeleteOk, it's a little heady. I've read it several times now and I'm not sure I entirely follow. You're a degree or two ahead of me!
Anyway, so I completely follow your concept of focusing on ability instead of disability. It's about focusing on the positive, embracing the many things you CAN do. I get it.
Then you say, "without putting them on display"... Now, remember perspective. I am now trained as a nurse, which means I have cared for many people in the hospital when they are dealing with all manner of body problems. So my perspective is atypical with regard to how many very private and vulnerable situations I see. Yes, of course, as a professional, I follow the legal protocols of HIPPA.
But I have also had my own personal struggles, for example dealing with bipolar disorder. I have certainly had moments where I did not want my skewed emotions and poor decisions out on display. I can understand not wanting to have my issues/struggles/disabilites to be seen by others. It takes courage to write that above sentence, disclosing my mental illness, on the world wide web for all to see. I think it is worth it in the discussion. You know me, I've spoken on panels about GLBT issues, et cetera. I believe in being honest and open about personal issues/differences so that the stigma, over time, is removed. But it has its cost. Right now I'm all caught up in beaurocratic process with the state of Wisconsin over my right to be a registered nurse. I disclosed my bipolar disorder (as it is my legal obligation to do) and it got my ap into a seemingly never-ending review process. Today it went to the WI Board of Nursing - we shall see how it works out. So I get the temptation to hide it.
So, are you saying that the treatments associated with a given disability are, and should be, private? Specifically, with children, are you saying that the parents do not have the right to parade their children out in this UpSee contraption? And more importantly, WHY are you saying that?
I don't think you're talking about legal right to privacy but perhaps the ethical right to it and consequences of it? Do you mean the consequences are from people who specifically know things about you? Do you mean societally what people think about people with disabilities? Do you mean that this issue of privacy with regard to treatment has an impact on your view of self? You completely lost me at "...perpetuates misunderstandings of a person's ability within future interactions..." Help me understand this part better. Again, I think we are both describing the same issue but it is from two different perspectives so I'm having a hard time precisely seeing it.