Self-Determination
When considering this topic, I utilized Gergen’s philosophy of
social constructionism, as the agreement that what is real is a construct of
society, or reality is defined by society. Starting with the basic notion that
societal reality is a construction of the people who make up the specific
society and is a joint understanding of the society based on the shared
assumptions and experiences that are defined by the culture of the society as
what is and is not acceptable in said society. The question of “how might
culture influence perspectives on self-determination is challenging, especially
when it comes to persons with severe disabilities. Defining
self-determination as the process in which a person controls his or her own
life and culture as the cumulative beliefs, customs, values and attitudes of a
specific society are important components to the discussion. If the goal
is for any person to control their life it must be balanced with the
expectations and determinations of the culture in which they live. If we
assume that human life is as it is, based on the societal and interpersonal
influences (Gergen, 1985) then self-determination is a construct of the culture
of said society and is defined as successful only when it meets the
expectations of the culture from which is constructed. The very basis of
self-determination is constructed by the society itself and is a tacit
agreement of how things are and how they should be based on the culturally
constructed values of said society.
The goal of self-determination is derived from social
constructs, which is a result of the specific culture of a society and those
who are in a position to influence the ways in which society works and perceive
what is “good”. The definition of success and independence that are
supported through the goals of education are maintained by the constructs of
said society. The people making the decisions are making them based on
what they believe is the right way for things to happen or simply the way they
should be. They are based on values that are representative of a dominant
able-bodied culture. Basically, everyone should be like “them” because
they feel that is the best way to be. The issue at hand is it discounts
other ways that one can live and be happy.
By attempting to provide the person with severe disabilities
agency in their own life, we are impeding their ability to actually have agency
in their own life because we are basing agency on a dominant able-bodied
culture. We discount the perspective of someone who has a disability,
especially those with severe disabilities, and refuse to take into account
their ability to perceive their reality differently, or not like an able-bodied
person. We are providing the illusion of choice based on our reality, which
most likely is not theirs. We are limiting their options by limiting
their choices, assuming what we have determined is “good”, which will make them
happy as well and thus fulfilled. Goals and independence should be
developed based on actual student desire and not what we believe they should
want. The belief that, “this is how we want you to live because we
believe this is the best way to live” is the embodiment of taking away their
right to self-determination, in the literal sense. Who has the right
to determine what another needs, wants or should do based on what they believe
is what they need, want or should do? It is a big presumption to believe
you are helping someone by making them like you. “Of course they want to live
in an apartment by themselves because that is what I want to do”, is an example
of the over handedness that presumes persons with severe disabilities are not
happy unless they are just like me, and or we. There should be no default
setting; this needs to be a case-by-case situation. Persons with severe
disabilities can not only desire some, if not all, of the things those without
disabilities have, and can live on their own as well as hold jobs and get
married and have children. However, it does not mean that is what they truly
want. In our society, we tend to be very rigid about what people
can and cannot do. There is always someone there to tell us what is and
is not appropriate. The over-riding and prevailing sentiment seems to be,
everyone should be a certain way and that we will develop a system that will
get you to a certain level so that you will be happy, is, I would argue,
wrong.
I am reminded of the story from the text, Equity and Full
Participation For Individuals with Severe Disabilities, of the little girl who
seeks to be like every one else but wishes for a best friend just like
herself. She is mimicking, a stated skill, the desires of society to be
part of the whole while truly wanting to be with someone who understands what
she is going through and who she is through shared experience, not social
construct.
Reference
Gergen, K. J. (1985). The social
constructionist movement in modern psychology. American
Psychologist, 40(3), 266-275.
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