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)
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.
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.
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.
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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