Disability Advocacy, Activism and Empowerment
What is disability ?
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The medical model is presented as viewing disability as a problem of the person, directly caused by disease, trauma, or other health condition, which therefore requires sustained medical care provided in the form of individual treatment, by professionals. In the medical model, management of the disability is aimed at a "cure," or the individual’s adjustment and behavioral change that would lead to an "almost-cure" or effective cure. In the medical model, medical care is viewed as the main issue, and at the political level, the principal response is that of modifying or reforming healthcare policy.
Social Model
The social model of disability sees the issue of "disability" as a socially created problem and a matter of the full integration of individuals into society. In this model, disability is not an attribute of an individual, but rather a complex collection of conditions, many of which are created by the social environment. Hence, the management of the problem requires social action and is the collective responsibility of society to make the environmental modifications necessary for the full participation of people with disabilities in all areas of social life. The issue is both cultural and ideological, requiring individual, community, and large-scale social change. From this perspective, equal access for someone with an impairment/disability is a human rights issue of major concern.
Legal Model
The lack of competent physical and mental faculties is the absence of legal capability to perform an act. The term disability usually signifies an incapacity to exercise all the legal rights ordinarily possessed by an average person. Convicts, minors, and incompetents are regarded to be under a disability. The term is also used in a more restricted sense when it indicates a hindrance to marriage or a deficiency in legal qualifications to hold office.
The impairment of earning capacity is the loss of physical function resulting in diminished efficiency; the inability to work.
In the context of Workers' Compensation statutes, disability consists of an actual incapacity to perform tasks within the course of employment, with resulting wage loss, in addition to physical impairment that might, or might not, be incapacitating.
Under federal law, the definition of a disability, for Social Security benefits purposes, requires the existence of a medically ascertainable physical or mental impairment that can be expected to result in death or endures for a stated period, and an inability to engage in any substantial gainful activity due to the impairment.
Social Security provides safety net for those who are unable to work through incapacity (Physical and Mental) based on medical evaluation.
ADA provides government protection against discrimination (employment, school etc...)
Explanation of Disability
Disability only exists in reference to ability, but not necessarily a Western biomedical sense of ability. Taking a foreign field site census of people who would be considered disabled in the U.S. may tell us a lot about illness process, but nothing about disablement or even impairment. People are disabled if they are considered impaired and treated as disabled. There is no absolute. The cross-cultural range of acceptable variation in functional impairment related to disability is probably huge and completely unstudied. Knowing the cross-cultural statistics of the occurrence of a phenomena such as neurofibromatosis or multiple sclerosis or amputation is interesting and useful but should not be confused with a statistic on disability. To date, existing anthropological work on disability has followed three different approaches: 1) a focus on disability constructed from specific impairments, 2) cross-disability research, and 3) self-reflection of disabled anthropologists (for extended discussion of these three types, see Kasnitz and Shuttleworth, 1999; Shuttleworth, 2000).
These are fluid pragmatic research definitions that are also orientated toward satisfying our epistemological cravings for understanding. Individuals are impaired if they experience (or are perceived by others to experience) physiological or behavioral statuses or processes which are socially identified as problems, illnesses, conditions, disorders, syndromes, or other similarly negatively valued differences, distinctions, or characteristics which might have an ethnomedical diagnostic category or label. Societies may or may not perceive impairments as resulting in functional limitations. These functional limitations may or may not be disabling dependent on culture and situational criteria including stigma and power. Disability exists when people experience discrimination on the basis of perceived functional limitations. A disability may or may not be a handicap, or handicapping, dependent on management of societal discrimination and internalized oppression, particularly infantilization and paternalism, and on cultural and situational views of cause and cure and of fate and fault...
Inequality: Education and Income Gap
Table A: Educational Attainment for the Disable in the United States with less than a high school degree 2008 to 2012
Table A compares disabled and non-disabled education attainment percentages from 2008, 2010 and 2012 for those who did not complete high school. The increase in population has been taken into account for this survey (the percentage rate for sampling is nearly 10%). Disabled individuals in 2008, 2010, and 2012 percentage of non-completion of high school are 23.9 %, 23.3 %, 22.2 %, as compared to non-disabled with 11.1 %, 10.8%, 10.2%. There has been a slight decrease in percentage for both disabled and non-disabled people that did not complete high school. Disabled individuals have slightly over double the non-completion rates as their non-disabled counterparts respectively. The mean average for the disabled (2008, 2010, 2012) for high school non-completion percentage is 23.14% as compared to 10.7% for the non-disabled. While there seems to be a slight increase in high school completion, the educational achievement gap holds steady between disabled and non-disabled by more than double the amount.
Table B: Educational Attainment for the Disable compared to non-disabled in the United States with BA or Higher college education 2008 to 2012
Table B examines the comparison between disabled and non-disabled education attainment percentages from 2008, 2010 and 2012 for those who completed a Bachelor’s degree, or higher. The increase in population has been taken into account for this survey (the percentage rate for sampling is nearly 10%). Disabled individuals in 2008, 2010, and 2012 percentage of completing a Bachelor’s degree, or higher are 12.3%, 12.2%, 12.4% as compared to non-disabled with 30.6%, 30.9% 31.7 %, respectively. There has been a slight increase in percentage for both disabled (slight decrease in 2010) and non-disabled people that has completed a Bachelor’s degree, or higher. Non-disabled individuals have nearly triple the completion percentage of having a Bachelor’s degree, or higher than their disabled counterparts. The mean average for the disabled (2008, 2010, 2012) completing a Bachelor’s degree, or higher is 31.07 % as compared to 12.3% for non-disabled. While there seems is a slight increase in college completion for non-disabled individuals, disabled individuals experienced stagnate growth in attaining a Bachelor’s degree, or higher completion. There is a substantial educational achievement gap between disabled and non-disabled by more than triple the amount.
Table C: Disabled individuals living below the poverty line percentages from 2008 to 2012
Table C to demonstrate that there may be a wealth and an educational attainment gap within the disabled population, which I will explain shortly. Table C examines the comparison between disabled and non-disabled people living under the poverty line with percentages from 2008, 2010 and 2012. 2012. The increase in population has been taken into account for this survey (the percentage rate for sampling is nearly 10%). Hosts of factors have contributed to increase, such as the recent recession and job loss growth that had occurred. Disabled individuals in 2008, 2010, and 2012 percentage of those living under the poverty line are 25.3%, 27.0%, 28.4% as compared to non-disabled with 9.6%, 11.9%, 12.4 %, respectively. There has been a slight increase in those living below the poverty line percentage for both disabled and non-disabled. Disabled individuals have more than a double the rate living under the poverty line percentage of having, than their disabled counterparts. The mean average for the disabled (2008, 2010, 2012) living under the poverty line is 26.9% as compared to 11.3% for non-disabled. There is a substantial wealth gap between disabled and non-disabled by more than double the amount.
Awareness, Education, and Change
Joseph Shapiro’s No Pity: People with Disabilities Forging a New Civil Rights Movement are examples of disabled individuals regaining their self-identity, self-worth for themselves and challenge society’s misconceptions about disability. A disabled person is disabled more by social construction than the actual impairment from social barriers. Edward Roberts also faced social barriers when he attended Berkeley College. He set out to destroy these barriers by recognizing his disability, changed his perception of a disability in society, as well as his own identity. He became a voice, an important and productive member in our society by breaking the stigma held against him. He became an advocate and leader. Edward Roberts began “opening a civil rights movement that would remake the world for Berkeley campus.” (Shapiro, p.55) Roberts is considered the father of the disability civil rights movement. Roberts attended the University of California at Berkeley. He was the start to first this campaign for the disabled. Roberts lived segregated communicating by telephone with other students after being paralyzed by polio. He required an “iron lung,” which assisted his breathing. Roberts lived in the infirmary on the “the third floor of the university’s Cowell Hospital.” (p. 59) Disabled students were admitted to Berkeley; however, Roberts faced a challenge for admittance. He was denied, based on discrimination and social perception that he would not be able to find a job and was denied money from the Rehabilitation fund, even though his grades were merited his entrance.
Roberts had faced this ridicule before when he attended high school. Edward Roberts’s mother, Zona Roberts fought with the education institution to allow his physical rehabilitation count as physical education in school after the news heard of his story. Berkeley claimed that they would not accept Roberts because it did not work for other “cripples.” Yet, Roberts was able to attend San Mateo College with the help of his colleagues into the classroom (Shapiro, p.57-59). Educational tracking attempts to eliminate students that do not fit in (i.e. poor, disabled). By using educational tracking, the students are left in lower performing sections that hurt their abilities further. Roberts had recognized that his main problem was the money needed to support his disability, while in school. He also realized that he was more than capable of achieving educational attainment and fought for it. A culture would emerge with group with similar disabilities, known as the “Rolling Quads” advocates and supports of Edward Roberts and his fight against educational inequality. Roberts is an educator, peer mentor, and leader respected in his field of work.
Institutionalization can cause devaluing, depression, dependency, and psychological damage to a person. Joseph Shapiro gives an example of Larry McAfee, who became quadriplegic after a motorcycle accident. According to Shapiro, McAfee wanted to commit euthanasia, which was supported by the court system. The institutionalization of McAfee left him as a virtual prisoner with no means to enjoy life and become productive again in society. His life was intolerable and there was nothing looks forward to by living. (259, 268) The court system and medical institution has reinforced persecution against the disabled, as it did in the early 20th century. Carol Gill is quoted by Shapiro stating that McAfee suffered “disability burnout” (261), in which depression and loss of self-worth in society leads to a disabled person committing euthanasia based on misconceptions of the disabled. The courts addressed McAfee as though he were a piece of property without acknowledging his humanity. “It is better to be dead than to be disabled” (Shapiro 293-294) as stated by Robert Powell, the president of The National Right to Life Committee. McAfee Shapiro adamantly states that a “normal” person would receive counseling, rather than euthanasia, but if you are disabled than, your life is not worth living, which devalues such life (273-274). The court system has attached a label of self-worthlessness to a group of people. Disabled people are affected by being labeled “worthlessness and unworthiness” of humanity, which occurs with race, class, and gender. A reflection of the devaluation can be seen in disparity of wealth and pay. I postulate that oppression is created through self-worthless labeling attachment that dehumanizes people that has existed throughout history with different cultures, disabled, and non-disabled.
My Experience with Disability
I can relate personally to disability because I am an invisible disabled person with Type I diabetes. My son was diagnosed with mild Attention deficit hyperactivity disorder (ADHD). The school that my son attended wanted to place him in special education. My son had excellent grades. I was concerned because of the stigma that surrounds the lower educational track and standards of special education that would jeopardize my son’s educational future. I was also concerned about his hyperactive behavior in school, which would affect the students in the class. After a few brief questionnaires to his teachers and us, it was decided that the best course of action was medication. He was given Adderall, which affected him emotionally and physically. The medication given would help to increase his concentration and calm him down. That event would change my son’s life and me forever. My son’s behavior was “different,” and resulted from miscommunication and improper disciplinary techniques. I researched alternative methods on addressing my son’s problem. It included talking about the problem, rather than placing blame. We implemented different tools for rewards and punishments with an explanation for why they did and did not receive an award. Within a week, my son and my daughter behavior saw a drastic improvement. I believe it is because I changed the way spoke to my children when they misbehaved.
The neurologist did an initial survey with my son and concluded it would be in his best interest to take the medication. I was also advised that the medication could be addictive. I was disturbed by the side effects, which I immediately saw when he took the medicine. I began to search for alternative means in helping my son cope with his behavior and interaction with his social environment.
My son almost became another example of medication that was not needed to handle a behavioral problem. These different types of “behavior” do not subscribe to the ideal behavior within social context. There may be people quick to choose a doctor to handle and “cure” their problems and “fit” back into their community. The educational institution had backed up the neurologist’s assessment with the “symptoms” involved, which were hyperactivity, mood swings, and outbursts. My son would receive special services and counseling to “deal” with his dilemma. Luckily, after I researched the medication and behavioral problems, I was able to communicate and teach my son new behavioral techniques in calming down by using his energy in a creative would effectively make him student of the month for reading and math at P.S. 34 on several occasions. Teaching him coping techniques by introducing art, dance, martial arts, and music has enabled him to use his “dis-ability” and turn it into an “ability” advantage.
Disability is part of a person’s identity. The way a disability is handled can affect a person psychologically. Disabled people have been throughout United States history as a catalyst for scapegoating through mental illnesses to being perceived as a social and economic drain on society without having a chance to contribute to society. Changing society’s perceptions on disability is a daunting task. The approach to changing stigma is through changing how society perceives disability, how disabled people perceive themselves and by changing the social construction based on a person’s identity.
I have been affected by stigma, since I was a child with type I diabetes. I remember as a child, when classmates would tease me with candy. As an adult, I was denied job opportunities, and have had been denied an application to the military based on my disability by institutionalized discrimination. These were but a few instances in my life where I recognized my disability, but I began to engage and counter argue what was considered a weakness and turn it into a strength. I have ran marathons and continuously worked out all my life. My blood sugar readings have mostly been excellent, except on holidays where I “cheat” a little and eat cake and other sweets. I began to learn about my body and myself. I began to challenge the ignorant stigma where I have been labeled a liability because I require medication. I felt incomplete and incompetent because of the perception of my condition. That would definitely change as I got older and I would correct people’s sympathy and pity towards me. I found a quality of strength and leadership by “educating” others on my condition. That would have an impact on how I would raise my children, my son who has ADHD. I began to challenge the concept of using medicine to correct a condition that really was not a condition. It was the way I communicated and disciplined my son.
Disability Oppression
Oppression
Eugenics
Subtopic
The process of the independent movement, freedom, and leadership, according to Kasnitz (2001), represents the following parameters that lead to leadership and reimaging disability identity. The reimaged identity allows for transforming disability into en-ability, strength, “PREDISPOSITION to leadership and HISTORICAL CONTEXT: people begin in a historical time and with ability or potential towards leadership, regardless of their impairment. Communication skills, self-esteem, family support, personality, pre-disability experience and expectations, and the drive to achieve were among the factors identified as contributing to predisposition for leadership. Other SIGNIFICANT LIFE EVENTS: this included education, marriage, employment, and so on. Exposure to injustice about race, class, and gender discrimination were also identified as significant, leading to awareness that impairments functional limitations are grounds for creating 'disability' oppression.
DISABILITY EVENTS: the ONSET, type, change, extent, stability, and other key variables of impairment and/or disability (Kasnitz 1994) affect a person’s awareness of and identification with other disabled people. The nature of impairment also affects the social stigma cast upon it.
DISABILITY STIGMA and DISCRIMINATION experience: stigma and the experience of discrimination, in school, family, work, or generally in society is a critical factor in the development of leaders. An ‘AHA!’ experience is a speedy or sudden appreciation of a fundamental identification with the independent living movement. The ‘Aha!’ experience is that of connecting one’s disability experience to a collective status, with shared issues, within a civil rights movement.
DISABILITY IDENTITY assumption or change: identification as a disabled person and identification with a group of disabled people is part of the ongoing process of constituent identity.
PEER contact: mentor, mentee and role model experiences. OPPORTUNITY for peer contact or support and skills related to leadership: opportunities and peer experiences interact, occur repeatedly and in combinations to provide support and skills, which in turn lead to ‘roles’ in the formal or informal disability network, or to other mainstream leadership positions.
Empowerment and Leadership
Roberts had become an advocate for the disabled through his fight. He started his journey when he refused to accept the ideology of society and the medical institutions that told him that he would “[never] go to college, marry, or hold a job. The answer, based on what doctors, nurses, and counselors had said” (Shapiro, p.56-57). Roberts’s identity began to change from being a “helpless-cripple” into an inspirational advocate and leadership.
His first sign of retaliation was with a nurse that he did not like. He starved himself, until a new nurse arrived because he refused to be told when to eat. . His identity had already taken shape because of the feedback he receives through society. He was embarrassed of his body (Shapiro, p. 56-57) . He would prove them wrong when he finally gained admittance into Berkeley and marry his wife. He only needed the tools that later he would receive, his electric wheelchair, which gave back some of his freedom.
Later an “alliance” of other disabled students formed the “Rolling Quads." They were able to form an advocacy in-group and would no longer tolerate maltreatment. One counselor attempted to evict two men claiming that they would not be able to work because of their condition. Roberts responded to this threat by fighting the system and using media to voice their opinion, the counselor resigned. (p. 62) The Rolling Quad would later expand their political voice by fighting the city, which had cut sidewalk curbs too small to allow wheelchair accessibility. They won $50,000 a year to ramp the city streets (Shapiro, p.62-64) Leadership was developed through what they and society had believed to be a weakness, into a powerful movement.
Their disabilities had in fact made them an increasing growing political power. Roberts would later go to Washington, D.C. develop an anti-dropout program to people with disabilities. The Department of Health, Education, and Welfare would give a grant of $81,000 to the Rolling Quads. Berkeley would chip in another $2,000. The Rolling Quads would use this grant to create the Physically Disabled Students’ Program (PDSP), which helped to find accessible apartments and personal attendants by assisting disabled students through the red tape (Shapiro, p.63-64).
These programs would help to change Ed Roberts’s life forever. In 1975, the governor of California named Ed Roberts the Department of Rehabilitation. He would be married to his former physical therapist, Catherine, and they had a son named Lee (Shapiro, p.68). This disproved the fact that Roberts would be a state dependent who would not be able to achieve success in life because of his disability. The lack of support caused him to experience the disability. He would be able to set up independent living centers for the disabled community.
Russ Fine would come to McAfee’s aide and become his mentor. According to Shapiro, Fine had seen the living conditions of McAfee as a prisoner. He was not allowed to watch certain shows, such as soft porn. Nurses were offended by McAfee and they treated him without respect, or morality. The nurses dictated what his quality of life should be. McAfee was locked in to a dependent system of welfare, which did not help him. Later on McAfee would read about a Canadian who built a private home for himself, which catered and accommodated him with his choice of nurses. McAfee would then go to Congress as an activist, after he saw that there were tools that can him become productive. He had been restricted by his nurses to use these tools because of liability issues. The red tape created by the state of Georgia treated him worse than a criminal. After months of activist protest and McAfee instance that he will not return to the institutionalized prison, he was granted his dream. Georgia State’s Medicaid program would provide him with his home and personalized equipment and nurses. He was able to live a better life (298-302). Russ Fine had given McAfee insight that life is worth living and that a person must fight for their rights when they are trampled on. McAfee in his own right gained confidence, self-respect, and most importantly SELF-WORTH through his struggle. He became a leader through his suffering and won. He began to think of himself as human and demanded the same from others.
Petition for Ed Roberts Day