Challenging Societal Views of the Effects of Physical and Intellectual Disability

     This blog was originally developed for a service learning course at Indiana University in order to explore researching and writing's roles in  civic engagement.  It reflects on my experience as a service learner at Stone Belt in Bloomington, Indiana.  Stone Belt is a not-for-profit organization that provides resources and supports for individuals with disabilities.  My objective as a service learner was to observe the overall atmosphere of Stone Belt, and gain access to the Stone Belt community with the help of my "informant."  My informant, Ms. Vicars, welcomed me into the Stone Belt community by introducing me to staff and clientele, defining terminology unique to the organization, and giving me extensive tours of the facilities.
     My individual service to the community involved interviewing a twenty-five-year-old client over a five week period, and synthesizing a biography of his experiences as a young man with a developmental disability.  My experience meeting with this client not only alerted me of the false assumptions I had of persons with developmental disabilities, but also how my views had been influenced by society's false assumptions.  This blog explores the false assumptions society holds of persons with physical and intellectual developmental disabilities, and defines these assumptions as limiting to the advancement of these persons in the community and in their daily lives.

An Unexpected Realization

The names of the ACE and Stone Belt client have been changed for privacy purposes:

Initially I had no prior knowledge or experience with the Stone Belt Organization, and merely knew it helped people with disabilities (which I read on a pamphlet).  As I sat in the welcoming room awaiting the arrival of my Advocate for Community Engagement, I observed many men, women, and teenage girls and boys entering and leaving the facility either alone or in pairs.  I overheard the music of an Ipod, which belonged to the teenage boy sitting next to me, his backpack propped up against his legs.  ‘He must be another service learner,’ I thought.  As soon as I made this assumption, I was quickly corrected as the woman behind the desk asked if he was ready to leave for work.  He and the middle aged man sitting next to him stood up, the middle aged man picked up his backpack and escorted the teenage Stone Belt client out of the building.  I immediately learned the falsity of the schema of ‘people with disabilities’ I previously fostered.

Prior to this instance, I viewed myself as an open-minded and kind human being who did not cultivate any ignorant or prejudiced beliefs about any group, race, ethnicity, or gender.  However, upon seeing a seemingly ‘normal’ teenage boy sitting next to me, I immediately assumed he could not possibly belong to the group of people I considered to ‘have disabilities,’ and was truly surprised to see he was a Stone Belt client.  I was, and still am, ashamed of my lack of awareness of the misinformed and highly judgmental stereotypes I possessed about people with physical and intellectual disabilities at the beginning of the semester.  Once the ACE arrived and led me down the main hallway, I found myself unable to distinguish between many of the Stone Belt staff and clientele.  As men and women quickly jostled past me on their way to work or to various classrooms, I resented the incorrect assumptions I unknowingly held about people with disabilities.

The ACE led me into the cafeteria, where she introduced me to Mr. [Stone Belt Clientele], a twenty-five year old Stone Belt client who was born with Down’s Syndrome.  As part of my service project, I spent several hours across a period of three weeks with Mr. [SBC] discussing topics from his favorite comedian (Drew Carry) to his experience moving from a trailer park to a newly built house this December with his parents.  Despite my academic studies of Down’s Syndrome and the physiological affects it has on the affected, I had no previous experience with a person affected by the chromosomal disorder.  Entering that initial interview, I viewed neurobiological disorders strictly from a medical perspective, mostly due to having only read about them in academic journals and textbooks.  However, after he warmly shook my hand and cracked a joke about the ACE talking too much, I knew Mr. [SBC] would change more than just my view on ‘people with disabilities.’

Although both of us were slightly shy at first, he quickly took out his leather wallet to show me pictures of his parents, sister, brother-in-law, niece, and cousins.  He shared everything from his favorite activities (going to the Monroe County Library with his best friend), movies (Harry Potter and Halloweentown), and employment (at IUPD), to sharing a trailer with his parents and sister as a child.  However, throughout the entire process of sharing the intimate details of his childhood, he never once expressed even the slightest bit of unhappiness or disappointment with any event in his life.  He truly only made warm, kind, and humorous remarks- a character trait I aspire to recreate in my own life.

Prior to this experience, I unknowingly viewed ‘people with disabilities’ as just that.  I thought of them as people who have a disability that prevents them from behaving in accordance to, participating in, or integrating into the community.  Mr. [SBC], along with the clientele of Stone Belt I was lucky enough to meet, unknowingly changed my shamefully ignorant perceptions of people with disabilities, and challenged me to not only question my prior beliefs about the Stone Belt clientele, but also about every aspect of life in general.  Mr. [SBC] is just one of the thousands of Stone Belt clientele, each with their own individual stories of personal achievement and contribution to the community.  Not only did he single-handedly obliterate my previous misconceptions about how disability affects one’s life, but he showed me his inspirational way of meeting and overcoming any challenge, whether it be a chromosomal disorder, growing up below the poverty line, or working in a highly judgmental society, with a joke and the warmth of his smile.   I can only hope that Mr. [SBC] and the millions of other people affected by physical and intellectual disorders will continue to challenge and change not only the perceptions many people (knowingly or unknowingly) foster about disability, but also their outlooks on life in general.  The Stone Belt clientele have taught me to never make assumptions about anyone or anything, to not be surprised when someone or something challenges a schema I previously held, and to greet every challenge I face with the determination and motivation to always achieve my personal best, and to do it with a smile.

Society's Views of Disability are Truly Disabling

While many people are sympathetic to the hardships that people with physical and mental disabilities face in their everyday lives, these people may not realize that their benevolent sensitivity is hindering those with disabilities rather than helping them integrate into society.  Historically, persons with intellectual disabilities have been denied the right to live in the community, marry, procreate, work, and receive an education.  They have been subjected to incarceration, sterilization, overmedication, and cruel or unusual punishment.  In the 1930’s, most people disabled by polio and cerebral palsy had their job applications stamped with “PH” for physically handicapped, as a signal to not give these people jobs, and most were institutionalized thereafter. While society today strives to sympathize for and accept those with disabilities, many are unaware that by segregating these people and viewing them as different, we are still withholding their opportunities to flourish and prosper in their daily lives.  Instead of feeling sorry for someone simply because they are different from us, society must embrace these differences (as the affected individuals already have) and help integrate them into the community by giving them the tools they need to attain the lives we have withheld from them for hundreds of years.

Although the general attitudes towards persons with physical and intellectual disabilities have evolved from malevolent disregard to somber acceptance, this progression may not be as benevolent as one would think.  Ellen Barton claims that the experience of disability is often one more of segregation and prejudice than one of integration and welcome.  She claims that we have constructed overly simplistic stereotypical representations of disability primarily by erasing the complex experience of individuals with disabilities (Barton 172).  Although it may appear that the general attitudes towards disability have transcended the past malicious views, it actually seems that Americans’ acceptance of persons with disabilities is primarily due to pretending the hardships faced by these persons do not exist.  We discredit their seemingly small, but in actuality enormous strides towards integrating into the community.  These new beliefs, while benign, “effectively erase the complex experience of disability by adults whose legitimate interests in independence and autonomy are therefore never represented; this also establishes a binary distinction between the able-bodied and the disabled, separating and distancing the disabled from the abled” (Barton 173).

In addition to Barton, many social models have highlighted oppressive social and political structures that exclude and marginalize people with disabilities.  Within this framework there is a strong call to the notion of rights and respect for individual rights as the basis for removing discrimination and enhancing the participation of disabled people in the community.  By removing these persons with disabilities from our communities, whether it be by denying employment, or simply denying equality in a conversation, we are denying persons with disabilities their divine human rights and preventing their opportunity to further their own valued personal projects without interference. 

“Human rights set down the minimal conditions required to lead to worthwhile lives.  At the heart of such lives reside individual judgments and the pursuit of personal goals…  If there is one group that has historically been denied the dignity and value attached to the status of being human it would have to be people with intellectual disabilities” (Ward 297).  While Barton claims our social construction of persons with disabilities as dependent, pitiful members of society belittles the enormous burdens they overcome and damages their well-deserved respect, Ward claims that our disregard for the challenges they face in their lives devalues the life of a person with a disability and denies them the status of being human by denying their human rights granted to them at birth.

Thus, by diminishing the experience of people with disabilities, we ultimately diminish the understanding of disability by society at large.  This reinforces the stereotype of disability as life-long dependence (Barton 197).  By creating this idea of incompetency, people with disabilities are frequently denied the opportunity to live their lives according to their own interests and preferences.  It is assumed they are “eternal children,” unable to speak and make their own decisions.  Such reasoning claims that people with physical and intellectual disabilities should not be allowed to fully participate in the world or be allowed the skills necessary to do so (Ward 305).  The ethical requirements of human rights obligate our communities to work harder in ensuring the interests of a person with a disability are acknowledged, and he or she are given the tools they need to live the life they desire.

Sources:
Barton, Ellen L.  "Textual Practices of Erasure:  Representations of Disability and the Founding of the United Way."  Embodied Rhetorics: Disability in Language and Culture.  Eds. Wilson, James C., and Cyntheia Lewiecki-Wilson.  Carbondale, IL: Southern Illinois UP, 2001.  169-199.
Ward, Tony, and Claire Stewart.  "Putting Human Rights into Practice with People with an Intellectual Disability."  Journal of Developmental & Physical Disabilities 20.3 (2008): 297-311.  Academic Search Premier.  EBSCO.  Web. 7 Mar. 2011.

A Glimpse of Stone Belt's Devotion to Integration

            As one passes through the central automatic sliding glass doors, veers slightly to the right and awaits the opening of the second automatic sliding glass door, the feelings of uneasiness and anxiety, characteristic to a hospital, initially drape over one’s thoughts.  However, upon entering the greeting room of the Stone Belt facility, the enormous 5x6 foot vivid portrait quickly reassures those who enter that this is not a facility designed to mourn diagnoses of illness or to seek medical treatment.  Rather, the meticulously rolled and woven multi-colored fabric and glittering embellishments welcome guests into the Stonebelt community, making one feel comfortable and at ease beneath the joyful portrait.

            Vibrant strips of paper are tightly rolled and twisted into the faces of ten people, some of whom are clients and some of whom are staff members, however, the difference is undistinguishable as all present are merrily interacting.  There are few similarities between any two people.  Each person is of a different race, gender, or age.  However, a blue-eyed man holding a guitar hugs a woman in a lilac cocktail dress and pearl necklace; a young man wearing an argyle sweater in a wheel chair paints accompanied by a tall, brunette, pig-tailed girl; a dark-skinned man waves as he holds a life-preserver, guardedly watching over a young girl playfully splashing in the pool.  The Stone Belt facility is composed of various swatches of fabric, and the cars and buses used to transport the clients are plaid and floral patterned.  The participants bask in the open sunshine outside of the center, emphasizing their active participation in the community, and disproving the notion that Stone Belt is a facility to isolate its clientele.

            The portrait hangs directly in front of the glass doors, and is the first focal point upon entering the welcoming room, surrounded by twelve leather upholstered chairs and a check-in desk directly to the portrait’s right.  While sitting in the welcoming room, one can see the intricate weaving of tightly wound multi-colored paper into the beaming faces of Stone Belt clientele.  The blissful smiles of the patients initially astound an observer that may have misconceived Stone Belt as a support center for clients with physical and mental disabilities.  However, the cheerful clientele and faculty depicted in the picture reinforce that Stonebelt is not a center designed to “cure” its clients, but to recognize and advance the unique contributions each client can make to their own personal lives and the lives of the community.

            The portrait is one of many pieces of artwork displayed throughout the center that are composed and constructed by the clients themselves.  The Arts Exploration program is designed to provide an outlet for self-expression through visual depictions of the individuals with disabilities at Stonebelt.  The staff of Stonebelt feels all people have the ability to contribute to the beauty of our community, and this program enables individuals with disabilities to have the opportunity to share their talents and to promote messages of independence, dignity and community integration.  The program also allows these individuals to have the opportunity to work as professional artists through the sale of their original art works.  Many clients are now locally and regionally recognized, and their works are sought after by enthused collectors.

            The mission statement of Stone Belt clearly asserts that it is “[their] mission, in partnership with the community, to prepare, empower, and support individuals with developmental disabilities and their families to fully participate in the life of our community.”  Therefore, Stone Belt recognizes its clients have unique capacities, gifts, and talents, and aim not to cure their disabilities, but to develop their assets by providing access and support in order to offer opportunities for choice and social integration.  It is not a facility designed to isolate its clients from society, but to provide opportunities for rewarding and successful integration into the community through skill development self-advancement.  The portrait in the lobby not only provides a visual depiction of the various enthusiastic clients of Stone Belt, but also serves as a testament to the unique capacities and skills of its clients, who, with the helpful hand of Stone Belt, demonstrate their own competencies and self-sufficiencies to contribute to the greater good of the community.

A Descriptive Analysis of a Western Culture Artifact

                  While the small, rectangular electronic device we refer to as a cellular phone (cell phone for short) is as innately known to us as respiring, there are millions of people around the world who have never seen this western artifact.  To those who have never seen a cell phone before, the object appears to be a handheld, rectangular piece of plastic with a glass window that occasionally produces light.  When the artifact produces light, vibrates, or produces noise, the owner immediately focuses his or her attention on the artifact.  The owner may pick up the rectangle and talk to it, producing the appearance of a person talking to their hand.  On other occasions, the owner may frantically hit the glass window or plastic pad in response to its pleas for attention.  When the owner obliges and focuses his or her attention on the glass window, she or he exits the present and enters an electronic trance where all other commotion, activity, or obligations surrounding the owner are non-exisistant (or merely not sufficiently important enough at the time).

                One may wonder how this rectangle captivates the owner’s attention to this extent, and what this rectangle holds that temporarily disables the owner’s active participation in the present.  If the observer reads articles or studies on it, she will find that this rectangle is responsible for many automobile accidents and deaths.  Several cities and states are banning the usage of this rectangle in automobiles due to its unsafe affects on the user, similar to illegal substances.  If the observer were to ask a typical American family about the device, the elders would not be very knowledgeable about the rectangle, which suggests this is a fairly new artifact to appear within the newer generations.  If one were to ask the middle-aged members of the family about the rectangle, they would respond that they own rectangles, however, do not use them frequently and are not fully knowledgeable about the possible functions of them.  They may also complain about the extensive use and cost of their children’s rectangles.  Upon observation of American youth culture, she would find the rectangle is predominately used by younger generations.  They appear most knowledgeable and savvy with their rectangles, and typically ignore all surrounding activity to appease their rectangles pleas for attention.

               Upon observation of a teenager using their rectangle, the observer would notice that when held to the ear, the rectangle speaks to the owner.  When the owner frantically taps the glass window of the rectangle, he or she produces text, which the owner then “sends” to another rectangle.  There appears to be an invisible circuitry that transcribes, transports, and delivers these messages between rectangles, allowing the user to communicate with others not present at that time.  This invisible, possibly spiritual, circuitry is referred to as a Satellite Network.  The observer may then conclude that the function of this rectangle is to facilitate social interaction between owners who are not geographically close.  The owner uses this rectangle to speak verbally or through text to another who is not present, creating an invisible connection between the owners through social interaction.  The observer can then conclude that the rectangle’s purpose is to establish communication with other rectangle owners who are too far away to communicate in person, satisfying the western culture’s desire for close social interaction despite geospatial differences.  While this rectangle has detrimental affects if abused, such as using while driving or using in inappropriate situations, the overall function of the cell phone is to facilitate relationships, whether the owner is several miles to several countries away from loved ones.

Civic Engagement: An Admirable Service or Egoistic Advancement?

“Civic engagement means working to make a difference in the civic life of our communities and developing the combination of knowledge, skills, values and motivation to make that difference.”

-Thomas Ehrlich, Civic Responsibility and Higher Education

Quoted in The New York Times,

Thomas Ehrlich defines “civic engagement” as the desire to help one’s community so that it not only benefits the surrounding population, but also benefits oneself in return through the development and practice of skills necessary to grow toward productive adulthood.  While civic engagement ideally focuses on the selfless improvement of others’ quality of living, instilling this admirable devotion to servitude by bribing young adults with awards and recognition implicitly plays on one’s own advancement while unknowingly assisting others in the process.  Betty Franklin insists that inspiring civic engagement in this way reduces its nobility to “the organized shadow of political disregard for the poor or other targeted groups and of unregulated profit seeking.”  Franklin implies that without these rewards or recognition civic engagement would cease to exist, and Americans would return to their self-centered lives without concern for the well-being of our communities.  However, Quinn suggests the youth of our nation are not solely driven by tangible prizes and gratitude.  “[Kids] want to learn and practice new skills… They want to contribute to the work of the larger society” (Quinn 97).  Quinn makes a bold statement that children may actually want to be civically involved- an idea previously viewed as absurd.  However, citizens are recognizing the craving for “constructive activities to engage [childrens’] bodies, hearts, and minds during the time they are not in school” (Quinn 97).  Therefore, perhaps the definition of civic engagement as involvement for one’s own personal gain while unconsciously helping others is not as accurate as Franklin implied.

While Betty Franklin writes “civic engagement… implies a faith that the functioning of society depends on citizens’ good will participation in the enterprises that make society work,” I find it difficult to imagine that the self-centered American society is willing to freely offer valuable time for the betterment of others (Franklin 25).  As a means to instill this yearning to improve one’s community at a young age, Franklin describes the actions of elementary schools, one of which is granting the Good Citizen award that “has been attached to cleanliness, politeness and compliance with authority” (Franklin 25).  However, I agree with Franklin that this rewards “compliance with authority rather than with other expressions of concern for the well-being of the class.”  Although I am not a history expert, I refuse to believe that the countless strides of improvement in American society were achieved through “compliance with authority.”  I believe the purpose of civic engagement is to challenge the public’s “accepted” views and beliefs of our society, distinguish how these views and beliefs are correct or incorrect, and devise remedies for these false assumptions in order to benefit those in need not for personal gain, but for the community’s advancement.

Another way of describing this concept is the sense of personal responsibility individuals should feel to uphold their obligations as part of any community.  However, neither views of civic engagement address the motivation behind these seemingly philanthropic actions.  Although civic engagement promotes the selfless devotion to improving one’s community at the expense of one’s personal commitments and obligations, the recurrent theme is that it ultimately benefits oneself, whether through the development of professional skills, establishment of business relations, or merely sprucing up one’s resume, which implies that the idea of civic engagement may not be as noble as previously assumed.

While Ehrlich defines civic engagement as “working to make a difference in the civic life of our communities and developing the combination of knowledge, skills, values and motivation to make that difference,” I believe he merely focuses on the profit seeking outcome of its behavior, such as personal and societal advancements, rather than focusing on the active working process to obtain such strides.  I believe civic engagement is not merely an end-point, the desire to “do good” to receive a Good Citizenship award or to submit an impressive resume, but reflects our society’s ongoing, caring and outreaching nature.  To spend time observing the practices and thoughts we view as “norms,” and encompassing the bravery necessary to challenge these standards as insufficient and outdated are processes through which these benefits are obtained.  In order to advance our communities, we must actively and conscientiously be questioning how we live our lives, and what we can do to improve it for others, not ourselves.  Therefore, in my opinion, I believe a more realistic and truthful definition of civic engagement should elaborate on the “working,” and focus less on the “developing a combination of knowledge, skills, values, and motivation.” 

Although I absolutely agree that engaging in civic duties and advancements develops crucial knowledge, skills, and values needed for productive adulthood, I believe that this is not the intended focus of civic engagement.  These personal gains are merely a byproduct of the remarkable progress made in our nation to help the homeless, mentally and physically disabled, at-risk youth, and many more.  In order to make these advancements, we must provide “a substantial opportunity,” as Quinn explains, for young people in order to develop these vital skills and inspire civic engagement in America as an ongoing, active process.  Therefore, I feel civic engagement is not a point reached, not merely a difference made unconsciously while focusing on personal gain, but the working, continuous, selfless process of improving others’ qualities of life without expectation of personal recognition or profit.