Friday, October 10, 2014

BONES: A Day of Disabilities to a Mind of Possibilities

BONES: A Deviance Day as Persons With Disabilities
Cuevas, Fausto, Juliano, Lazatin, Tan
SA21 – B
             
Don’t Dis my Disability: Who are the PWDs are Why We Chose to be PWDs
            Sociology often neglects disability whenever important tenets of society are addressed, mainly because of two reasons: a) experience is valued in sociological experiments, for a sociologist to actually write about a particular topic, he or she must experience the fullness of the topic in order to understand it further, which makes disability very difficult to write about especially since most sociologists are not disabled and b) subscribing to Parson’s sick role strips a “sick” person of normal expectations and responsibilities since they are not physiologically and psychologically fit to perform these duties. As such sickness becomes something abhorrent. The sick person, though not culpable for acquiring the disease is tasked with the new expectation under the sick role – get better. And in order to get better the sick person has to get professional medical aid, i.e. the doctor who then takes on the physician role (Parsons, 1951).
            This limited view of disability however does not fully encompass the full extent of what it is to be “disabled” in society. It only accounts for the sick role whose primary role is to get better quickly and return to his normal state, which is why getting rid of the disease is often termed as “getting better” or “recovering” because you are, in society’s eyes, removing a abhorrent state from yourself and returning to your normal, healthy self. There are however, certain diseases that cannot be completely cured or cured in a short time. Fracturing or breaking a bone for instance is not something that can be cured quickly and easily. At the beginning the injured person adopts the sick role. He or she broke a bone, he or she cannot do normal activities that he or she used to do such as walking to school, going to work, sports and other strenuous activities, and as such he or she is stripped of the normal expectations. The now “sick” person will also call on a physician to see what methods need to be done in order to get well soon, and the physician will bind the appendage with a broken bone in a cast in order to aid its healing.
            However, in the interim where a sick person is recuperating he may have a “sick role variation” (Barnes and Oliver, 1993) wherein from the “sick role” he or she may transition into the “impaired role” where he or she believes that the sickness cannot be cured immediately and he or she now has to be fully dependent on another person to help them with their daily activities, since they cannot do it for themselves (Sieglar and Osmond, 1974). On the other hand the sick person may transition into the rehabilitation role wherein the sick person accepts the disease that he or she has and learns to live with it, i.e. tries to integrate himself or herself as much as possible in the normal sociological responsibilities that the sick person possessed before falling into the sick role (Rothschild, 1970).
            In addition Parson’s sick role theory only speaks about the functions of the sick and disabled in society, but he does not touch on the pertinent influences of societal oppression on people with disabilities and the personalistic view of the disabled people about their disability. To only see their function as dictated by a non-disabled writer is to discount many aspects of persons with disabilities (Barnes and Oliver, 1993).
            This is why we chose to be persons with disabilities. We want to experience what it is like to be disabled in order to know first hand the social conflicts that they encounter and maybe, since we are stepping in their shoes get a personalistic view of what it feels like to be disabled.
            In the Bones experiment, we portrayed persons with disabilities as people with broken bones who needs slings, casts and crutches in order to continue to move around in society and follow the norms society had set for us.

            We conducted an interview with Mil Crespo, a junior in the Ateneo. Last year, he was injured from strenuous dance training in CADs (Company of Ateneo Dancers) and also in his dance troupe outside of school (A-Team) that competes globally. What happened was that after the injury itself, he had to stop training regularly but he couldn’t help but still dance once in a while in parties and dance battles and he kept delaying the surgery that would force him to wear crutches and a knee immobilizer for a few months so as to heal the torn ligaments, etc.
Mil Crespo: “Temporary PWDs” after tearing his knee ligament
After he finally went through the operation a few months ago, he would tell me that he would still act the same despite the injury. Life would go on despite his injury. He would wear the same clothes with the only difference being the crutches and immobilizer. He noticed how people were generally nicer and were more patient with him as he enters the room with the crutches and immobilizer. The cars that may have normally sped through the pedestrian lanes inside Ateneo suddenly stop even though he is not exactly on the lane itself yet. People make way for him as he walks to the different buildings in school and people, especially during his first few days, kept asking how he was and showed how much they cared for him. He was not reprimanded for being late in class and people would politely sidetrack during the stairs      
When I asked him how he viewed his injury in the context of his life, he said that it did not profoundly change his beliefs or values but helped him in gaining new perspectives. His time recovering from an injury and being a “temporary PWD” was a distraction or a roadblock in his life towards becoming a dancer once again. He knew now how to be more sensitive to people with disabilities with real life experiences that involved the daily struggle of waking up in the morning and having to do everything with that handicap. Being a PWD made him more appreciative of what he had and made him realize how much one does not notice what he has until it is gone.
Coming from the group’s analysis, his view of his injury and injured people was very Social Functionalist. This was because the injury was deemed by him as a Dysfunction to society when this handicap is something that is simply a hindrance from being who he wanted to be: a dancer. He knew that that was what he was meant to be and being a PWD at that time was simply a stepping stone to become something more in the future. This proves the prior point that all our notions about “the sick role” is limited to its function of getting better. Which is why the group decided to further investigate the sick role variations.
            We explored the two aspects of the sick role variation through two scenarios. In the “impaired role scenario” we have a sick person who broke her arm, dropping her phone, and is now dependent on people to help her since she cannot do it for herself. On the other hand we have the “rehabilitation role scenario” wherein two sick persons who cannot walk properly now use crutches and braces to get around without help from anyone. Our goal then was to investigate the responses of the people to our differences in roles. Sick people who take on the rehabilitation role are much more open to life and accepting of their disability. They are not afraid or ashamed to speak about their disability and they have movements to empower themselves and allow themselves to integrate themselves in society and also are open to letting other people know what it’s like to be them in order to be understood. They are people who are sick and yet they still try to take part in society, as such they do not subscribe to the traditional sick role wherein they are exempted from norms but instead they choose to embrace these norms and act as normally as possible (with the normal being society’s normal, of course) such as these students from Edge Hill University in Australia (Video 1)
Video One: I Can't (But There Are Things I Can)
            Those who take on the impaired role on the other hand are more skittish. They often feel pity for themselves and as such have a negative outlook on their disability, considering it a curse. They are ashamed of having to constantly depend on someone and blame themselves for being so inadequate, subscribing to what sociology calls the “personal tragedy theory”. The brunt of the work falls on their shoulders and not on the physician. When a physician fails to rehabilitate them from their disability, it becomes their fault and the physician gets off scot free, since he or she did everything possible professionally (Barnes and Oliver, 1993).
The Dysfunction of Disability: The Function of the Disabled in Society
            The disabled are often construed as dysfunctions and deviants in society. As society emphasizes the importance of staying healthy because only healthy people can contribute to society, the disabled do not have much of a function in society since they cannot do anything to aid the development and functions of society. Because of this they are often seen as deviants rather than functioning members of society (Oliver, 1998). This is proved in our experiment. For both the impaired and rehabilitation roles people looked at their injuries as something of a folly, a stupidity and something that is in essence bad. During the walk from Bellarmine to the Red Brick Road, multiple people stopped to ask the sick people the following general script:
Stranger/Person/Friend: Oh my goodness what happened to you?!
Sick Person: I fell down the stairs/ I got a sports injury
Stranger/Person/Friend: Be more careful next time, so you won’t end up like this!
            This dialogue shows that people view sickness or disease as a form of an evil, an aberration, basically a dysfunction that should be avoided at all costs.
            However, moving away from the structural functionalist view of PWDs and their role in society, using the symbolic interactionism perspective of positivism, PWDs can now be seen in a new light. In the theory of positivism, people with disabilities are viewed as capable members of society, who are capable of shaping research. They are not seen as victims or people who suffer but as participants of society, with the aid of methods that can help PWDs live a more normal life (Oliver, 1998).

Inside-Out: The Appearance of the Disabled
            People with disabilities stand out precisely because they have so many characteristics that is not “normal” or part of a norm. For the physically disabled, they often have various tools to help them move about and maintain a sense of normality. They have casts, slings, crutches, bandages, etc. They carry canes to help them move about, or sometimes they sit in a wheelchair.
            These objects serve as symbols that are recognized due to our socialization as markers for disease, and people have a perverse fascination towards them as they are completely out of the norm, as is most diseases are. As such, there is a certain stigma attached to people who are disabled, they tend to be treated like zoo-animals, to be looked at or even leered at, simply because they are different.
            This is on the external, physical aspect of what a diseased person looks like.
            But going levels deeper, the disabled person himself or herself is a symbol for weakness, helplessness and melancholy. When people see a person with a disease they immediately feel pity for the person and they, following the paradigm of the sick role usually let the sick person “off the hook” for whatever deviance they do. This goes to show that being disabled allows for a person to be a deviant precisely because being disabled is already seen as a deviance in the first place, as such any norm that will be violated because of this greater deviance makes the disabled person less or even not culpable for any further deviance.
            An example of this is crossing the street when you have a lower body disability. When we were about to cross from Bellarmine to Xavier Hall, cars automatically stopped even when the disabled person was still far away from the crossing. And even though the driver knew he would have to wait a while longer because the disabled cannot move very quickly, he still stopped allowing the disabled person to cross comfortably.
            This is a general societal trend observed as well. In trains, buses and other forms of public transportation, people tend to give up seats or make way for people who have disabilities since they give out a sense of helplessness that naturally causes people to pity them.
Sickly Behavior: The Observed Behavior of PWDs
            Persons with disability of the developmental form and those who are acting out the impaired role in the sick role variation tend to have what is called “challenging behavior”. Challenging behavior is defined as any behavior that can cause harm to the person or inhibit them from participating in society. This is their way of controlling the things around them since they are basically rendered helpless by their situation, and they find it difficult to do things for themselves. Challenging behavior makes people pay attention and through this the disabled person gets some semblance of control. This is also their means of getting the things that they need, since they could not get it for themselves, they need the aid of other people to get this. These include tantrums, throwing things, lashing out, etc. For the impaired people, this is most evident when they always, always point out their disability. They would usually call out in pain, they would move in such a way that highlights the injury, for instance if they had a broken bone in the leg, it is observable that the disabled person will often grunt while walking, having pain-filled facial expressions when stepping and occasionally bemoaning the difficulty of his or her situation in order to attract attention, sympathy and help from other people. As was exhibited earlier, since the disabled people send out a vibe of being helpless which naturally makes people want to help them, this kind of behavior usually works, therefore it is being reinforced in a way so the disabled people continue on doing this.
Video Two: Challenging Behavior for the Impaired Role

            On the other hand on the side of the sick people taking on the rehabilitation role, they are more optimistic and more open about their disease. They act as any normal person would, accepting the reality that the disability is a part of them and they have to live with it and be functioning members of society despite their disability. They converse normally with people, they go to school and they subject themselves to the same set of norms as normal people do. They accept their disability and are not ashamed of it.
In addition, as was stated earlier, they often campaign and advocate for their disability, not as a medical condition that has to be treated but as a normal part of society and that they as persons with disabilities deserve equal rights and deserve avenues needed for their participation in society. This point of view is what is called the social model of disability (Oliver,1998). There should be interventions for the disabled, not just to cure them but to treat them as normal people and non-deviants. In a way, the rehabilation role of the disabled people allows them to overcome the dysfunction of their illness and be functioning members of society even with it. They campaign for the right to get a fair chance to get a job, they campaign to be considered as a group in society, much like we gender and race is. Instead of fully depending on someone, the disabled performing the rehabilitation role is adamant that they maintain independence, sometimes to the point of stubbornness. Whereas the impaired role actor begs for help, the rehabilitation role actor rejects help and often sees help as an insult. They would often be caught saying:
            “I can do it myself.”
            “I don’t need your help, thank you”
            And even though sometimes they tend to encounter more difficulty by not accepting aid from anyone, they will still force themselves to perform independently as much as possible.
            Finally, when we speak about the behavior of persons with disabilities, we must also address their sensitivity to any reference made to their conditions. Some are more sensitive than others and there is no specific science to determine what kind of sensitivity a person with disability will have. There are different experiences, different causes for the disability and different responses to references made to it.
            In the Bones experiment, we were not as sensitive about our disabilities, maybe because we knew it was fake on one hand, and on the other, the disability we portrayed was temporary. Bones will heal, and they will be stronger when they do. As such, there is no lasting stigma against us apart from the shame of being involved in a stupid accident, which is why we broke a bone. It was also noticeable that people without the disability often find the tale of how you happened to break your bone quite amusing. They would generally laugh after we told them we fell from the stairs which is why we got the broken bones, and would generally not take the disability seriously after asking about it in (false) worry.
            Those with longer lasting disabilities however, are more sensitive to jokes, laughter at the expense of themselves and general references to their disease, so much so that there is even a list of things not to tell someone who is disabled (DiversityInc, n.d.). There are also those who believe that the capacity to joke about their disability, like the common blind jokes is a way to make them more accessible, more normal and more a part of the system (Bauer, 2005).

Pushing Daisies: Belief and Value System of Persons with Disabilities
            Beliefs and values are more rampant for PWDs who are playing out the rehabilitation role. Their main value is empowerment and equality. They want to be active members of society despite of their disability. They want to be recognized as functioning individual, capable of shaping his or her own destiny. They believe they have the capacity to do things for themselves. They firmly believe that people with disabilities have great abilities. As such, they train to achieve work, because they believe that it is through work that they can be active members of society and reach their fullest potential. They do not simply wish to be dependent on anyone, but they wish to take part in something greater than themselves.
Video Three: disABILITY
            They also believe in the inherent value of altruism. Since they cannot do things for themselves, they often have to rely on others for help. They believe that asking for help is necessary and there is nothing to be ashamed about in being in need of help. Instead of viewing it as a dependence, it’s an interdependence wherein they, as disabled people can also do something to help others, even in small simple ways, in exchange of the help they have received.

The Life and Times: A Day in the Life of a Disabled Person
            Routine is key to the life of a disabled person. They know what to do and when to do it, and this knowledge allows them to function independently. Routine, in a way is how they are able to get help even if there is no physical person there to help them. What do I mean?
            First let us go to the Bones experiment. In order to act out our role as PWDs we had to use the symbols that mark a disabled person, including slings and crutches and casts. The night before the deviance day, we already prepared the instruments in such a way that they would fit us. The sling is adjusted to fit an arm, the cast adjusted to fit a foot, the crutches adjusted for a person’s height. The morning of the experiment, we just went through a normal routine and grabbed the instruments and put it on quite easily.
            This same principle governs the PWDs. Everything has to be set for them, adjusted to fit them so that they would not have to fiddle with it, they simply have to grab it, put it on and they are good to go. This is why wheelchairs and crutches are always routinely placed next to the bed. There is a routinary cycle of food that they can prepare for themselves, the same thing every day so that they would already have a working system of how to prepare. Even their environment, as much as possible should be routinized. The furniture should be in the same places, the public transportations should arrive in the same time at the same place, their chairs and other instruments should be in the same settings as before. Routine helps them survive even if other people do not help them in any way.
            In the Bones experiment, this kind of routine is observed as well. Security guards would stop cars so we could cross. The drivers of the cars themselves would stop to allow us to cross. These routine practices allowed us to move without any semblance of difficulty and it was as if we were normal as well.
Video Four: A Day In The Life of the Disabled

The Bones Experiment: Being Disabled For A Day
            Based from this research, we decided to act like disabled people for a day, mainly to observe the response of people towards us. Would they help us, would they scorn us or would they ignore us?
            We split up into two groups, one group acted as PWDs in the impaired role. The set-up was the PWD would have her arm in a sling and she would drop her phone, while attempting to text with one hand only. She would then wait for someone to pick up the phone as she can’t bend down due to her broken arm. We did the experiment twice, once in front of Faura Hall where a group of students were lounging on the steps. When the phone dropped and our PWD slowly bent to retrieve it, no one even approached her to help, even though her bag was drooping down her shoulder. The non-reaction of the students is a reaction in itself and can have multiple explanations. On one hand, since our PWD only had a sling, they may have thought her disability was not that great and did not merit help. Secondly, it is part of our societal norm not to interfere with other people unless we are directly engaged. I think that if you ask someone to pick it up for you, this someone will pick it up because he was directly engaged by a PWD and in light of the Panopticon, or the social control of the self because we believe we are constantly being watched. It would then be in bad taste if he or she did not help a PWD. But if you are not directly engaged, it is part of our socialization to do a Pontius Pilate and wash our hands free of the things that we view as minor nuisances.
            Those who were acting out a rehabilitation role was not fully able to explore this role, particularly because the key difference between the two sick role variations is in terms of independence. In order to display independence, one has to be asked if they needed help and they would then refuse. This was not the case with our experiment. Most people tend to move away from us when we are going down the stairs, or walking. When the rehabilation role actors who sported lower limb injuries were going down the stairs, people simply moved around them and went on their merry way without asking if they needed help. This is what I would like to call the “Stranger Phenomenon”. We have been socialized in a world where strangers are bad, talking to people you do not know is uncouth and you should never do that. Usually this socialization does not kick in until our older years. This makes it difficult for us to address strangers, even when it is to help. We all subscribe to the live and let live principle of life and as long as it does not directly affect us, we pay no mind to it.
However, there are two instances wherein we found that the Stranger Phenomenon is subverted and there is some form of help or concern coming from other people. The first is when you encounter a friend. We are socialized to be courteous towards our friends. Going back to the principle of status and roles, taking on a friend status entails a friendly role, wherein you are expected to be courteous with your friend and always a source of support. You are not supposed to contradict a friend or leave a friend behind. As such, when friends see that you are injured, even though they could hardly care less, they would ask you in a prepared script that reinforces the dramaturgy between the friend roles that usually goes like:
            Friend: Oh my goodness what happened to you?
            PWD: I (reason for disability)
            Friend: Are you okay, do you need anything, do you want to eat? Do you need me to
            carry your things for you?
            Note that the friend is not really obligated to take care you, however, since society dictates that this is the roles that come with a friend status especially in cases of disability, he or she will help you even if it is inconvenient.
            Another interesting aspect we observed is this domino effect of good Samaritans. As long as one initiates the helpful act, others will follow in his example, primarily because the initiator now opens an opportunity for the others to follow in.
            Generally, the response we have observed for PWDs ranges between ignorance and immense aid and the response depends upon the relationship of the respondent to the PWD.
            In the end, the important thing that we have to consider for the experiment is the experience of being a PWD and how it will help us understand disability from the point of view of the disabled. Admittedly, we have an unconscious aversion towards the disabled, as if their disability is contagious in a way. If we look at the sociology of disability, we see disability as something completely out of the norm. The sickness becomes a privilege to be exempt from societal norms – school, work, church and any other social institutions. As such, it is difficult to think in terms of a disabled person, since the consuming principle with the deviance experiment is in essence still becoming a deviant, and not being a PWD. It was hard to separate the two from each other. Viewing disability from a non-disability perspective is the norm for us. When we’re sick, impaired or disabled in a way, we tend to feel this thrill – we can be deviants and skip school or work without any sort of sanction. This is not the way the PWDs view their disability however. It is not a deviance for them, it is not a thrilling act. It is actually a part of who they are. It is how society socializes them to be – disabled. And despite of the marginalization because of their disability, they take on their identity as a PWD and empower themselves through this identity. They are persons with disabilities who have abilities.
            Once this concept sunk in, when we did not view being PWDs as a deviant act but as an actual identity, things started turning around as well.
            To be honest it was difficult to be a PWD. It was difficult to move, the sling was hot against you arm, and your skin was perspiring against the scratchy cloth of the sling. The leg cast completely immobilized your leg from the knee down. It had a solid metal splint that bit into the skin. It was hard to walk since your body cannot do what it usually can. It was very difficult to carry your stuff, because you only have one working appendage instead of two and you have to mind not bumping, twisting or skewing your sling or your cast. It was easy to leave the crutches behind, and before you know it you’re hopping like a fish out of water. To quote the experience of our resident disabled, Enrique Fausto
I felt the two kinds of reactions while portraying the role of a PWD: sympathy and annoyance. There was sympathy from the drivers who stopped even when I was not yet too near the pedestrian lane when crossing from BEL field towards Xavier Hall. On my way down the stairs, people would quietly go to the other side of the stairs to give me space by the railing so that I could walk up and down the stairs in peace. As I walked along the different areas such as Gonzaga and the Red Brick Road, people would see me and would do their best so as not to stare and politely give space to me and ensuring that they don’t accidentally bump into me even though some of them were in a rush. The other side of the spectrum was annoyance. This was initially from another Deviance Group where they had a Doña and servants. I could hear their loud complaints even coming from the classroom going downstairs because due to my injured state, I blocked part of the staircase and delayed them from getting downstairs. This same occurrence also happened right before I was able to join the rest of the class when we ended the Deviance Day near Dela Costa. Though it was not as obvious, I also spotted two older ladies as I was walking along Ateneo who looked at my immobilizer and had stares that seemed as though they were judging me for committing a crime. It may have been only been a brief encounter but they may have associated having an injury such as what I seemed I had with being an irresponsible student or too clumsy that I got myself into this injury. That is one possible reason why they looked annoyed when they saw me as a PWD.”
            It was sweaty, exhausting work and we only were in this character for a while, now imagine if you lived this way daily. It is easy for society to view the PWDs as deviants, dysfunctions, people who suffer and are victims precisely because most of the theorems were written by non-disabled theorists. You acquire a different perspective when you become a disabled sociologist yourself. You don’t see the sick role as a sound basis anymore but you subscribe more to the sociology of disability, a social conflict perspective wherein it is viewed that PWDs should not be viewed as disease ridden individuals but as functioning members of society that deserve their own rights given by the state, which is an agent of society. They can be productive and they can be empowered through society itself. This principle exhibits the fluidity of society and how two different perspectives can exist at the same time within the same society. If we look at PWDs from the Meso-Level framework, in a way that society influences them and places them in the sick-role, they can also influence society, in such a way that they can exhibit themselves as capable individuals who have a function or a role in society much like normal people. Who knows, society is an ever changing way of thought that commonly changes with conflicts. With the PWDs now becoming more and more active in society, influencing it to fit their ideals, we may be on the brink of another societal evolution, the product of which will be a more holistic view on the PWDs.

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