Ok, I have been really busy with my program at Purdue, but since I was asked, more like prodded, I am going to start sharing some of my writing...

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.    

https://www.youtube.com/watch?v=gVCkJ7jLnz0

https://www.youtube.com/watch?v=R-WJov26_iA

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. 

http://www.autistichoya.com/2011/11/disability-is-social-construct.html

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. 

https://www.youtube.com/watch?v=vWjpI7HSShE

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. 

https://www.youtube.com/watch?v=w7VEMQEsy4s

Reference

Gergen, K. J. (1985).  The social constructionist movement in modern psychology.  American Psychologist, 40(3), 266-275.

So, I was asked to respond to a speech made by an amazing person...here are my thoughts.

First, let me say the thought that IDEA is a promise made to those with disabilities not only made sense to me, but resonated as well.   After all, equality of opportunity, full participation, economic self sufficiency and independent living are the bedrock of what our society has deemed necessary in order for one to lead a happy and fulfilling life.  It only makes sense that these results/outcomes should be available to all.  However, I was particularly struck by what I would argue is an extraordinary inconsistency of belief laced throughout the presentation.  It appeared the underlying argument that obligation of care for persons with disabilities fell to society, as a whole, rather than a responsibility of the parent and or family.  Turnbull lamented, we were working two jobs, had two more kids and we were tired.  We didn’t want to spend the next 75 years taking care of him…the system was not doing its job.

While encouragement and support were seminal themes of the Turnbull speech it appeared that the underlying tone was centered on the responsibility of society, in this case through governmental support, to in fact be responsible for those with severe disabilities throughout the entirety of their lives.  Now, do not misunderstand my stance.  We are an advanced and wealthy society and I truly believe we not only can, but also should, help those who need assistance in navigating the societal constructed norms by providing tools to those with severe disabilities that are designed to enhance their opportunities for success.  

I have often argued the first and foremost authority of who the person with disability is, what they require, and how is the best way to help, must be first the parents and second the family.  It is only through a supportive family unit that those with severe disabilities can and will be successful to the greatest extent possible.  Throughout this course, every example of a successful person with severe disabilities stems not from the educational system, or even teachers, but is instead a result of family intervention and advocacy.  I am not maintaining that teachers are not important, for they are, and I would argue the best ones are just too few to truly be the reason for students’ successes.  This does not mean they are not out there, just too often the teaching pool is created from those who see teaching as a second choice career and special education in many cases is a fallback from a teaching job.  Special educators must be the most highly trained and the best of the best when it comes to teachers.  Their jobs are not easy and require toolboxes that are many times, or even exponentially, larger than that of the general educational teacher.

But I digress.  The responsibility for the person with severe disabilities must fall squarely on the shoulders of the family.  Yes, there should be societal assistance, but only in a tertiary manner, parents, family, society.  To expect society to do what is best for what in many cases is seen, to the layperson, as parasitic in nature makes zero sense and to expect success is wishful at best.  A simple example is wages in which remuneration is based off of perceived value.  Instituting a minimum, or living wage, because that is what someone needs to survive is the antithesis of the economic values on which our society was founded.  In this country, you can spend upwards of 30 years increasing the value of your labor through the building of skills through education. The more desired skill, a product of education, one has, the more valued their labor is, thus higher pay.  When dealing with persons who are challenged to provide the desired skills by coercing higher pay for their undesired labor they are in fact being marginalized, and in many cases simply discarded.   The lessened opportunities of a person with severe disabilities to gain useful “on the job training” again limits their ability to realize the promises of IDEA.  I would argue the reason those with severe disabilities tend to be underemployed, or even unemployed, stems from the misguided belief they deserve or should be paid more in order to achieve the goals of IDEA. 

Instead of focusing on supplanting the family as the main longitudinal support, typically advocated, society should focus efforts and resources toward supporting those, family, who are doing their best to support those with severe disabilities.  But society must not, and cannot, replace the obligation of parents and or the family of persons with severe disabilities.  Group homes tend to end up being horrible places because those who need help the most are pitied, felt sorry for or in some cases reviled.  Their discounted wellbeing is seen more as a paycheck rather than a sacred duty of care.  What those with severe disabilities need the most is to be loved and supported, and as we all know, no one loves and supports their children like their parents or their family.

IDEA promises to help through the establishment of expected results and or outcomes. But unfortunately, it seems the most desired outcome is for someone else, through societal normed governmental programs, to do the heavy lifting.  I found it interesting that Turnbull and her husband wanted to start a home, segregated, for persons with severe disabilities that provided real work, real friends and such.  Interestingly, while fighting against segregation based on disability she and her husband were determined to create an environment that segregated in order to better serve those with disabilities.  When I was in my early 20’s my grandfather was deteriorating quickly.  At the time, I was able to move from Virginia to Georgia and it was decided I must do that, family responsibility.    For the last year of his life I lived with him and did my best to take care of him.  We had supplemental help throughout the day, but at night and on weekends, I was his sole support.  It was hard, very hard, but it was what my family not only did, but does. 

Responsibility is the foundation of my classroom.  Everyone involved has certain responsibilities and must not only meet them but also is held to them.  I am responsible, as the educator, for teaching my students and preparing them to the greatest extent they can be by providing access to the tools that lead to opportunity.  My students are responsible for learning as best they can the tools that they will need in order to take advantage of the opportunities that will become available to them.  Parents/family are responsible for supporting their students, both in and out of the educational system and throughout their lives, ensuring they take advantage, as best they can, of the opportunities that come their way as they quest for happiness.  In the final analysis, if all meet or exceed the expectations of their responsibilities the student with severe disabilities will be successful.

As shared by Turnbull, “No matter how far down the wrong road you go, if it’s the wrong road, turn around.”  I would argue we are going down the wrong road and we must turn around.  The promise of IDEA cannot be truly realized by persons with severe disabilities in the current climate and it is imperative the equilibrium between support from family and society be reexamined and rebalanced.  Turnbull exerted they were finally free from the “shackles of the system” yet still wanted the system to take care of their son.  However, it is only through a desire that the system “take over” or “take care of” that one can be shackled in the first place.