social model – UAB Institute for Human Rights Blog

Disability Symbols. Wikipedia, Creative Commons.

What is a disability?

“A disability is a condition of the body or mind that makes it more difficult for the individual to do certain activities and interact with the world around them.”

Approximately one in five adults in the United States has some type of disability. There are numerous types of disabilities that impact people’s daily lives through sight, movement, learning, or communication, although there are many others. Furthermore, even if two people have the same disability that doesn’t mean they are impacted the same way. Thus, individuals who have a disability do not consist of one general population, but instead a diverse population with various needs. Now the focus is more on how the word disability refers to the three components mentioned in the next paragraph and how there are numerous factors that go into having a disability.

The World Health Organization created the International Classification of Functioning, Disability, and Health (ICF). The ICF introduces the word disability into three main categories that are impairment, activity limitation, and participation restrictions. The term disability and impairment do not mean the same thing. Before the 1970s, the common view was that a disability is measured by whether or not an individual has an impairment or a health condition. In the 1970s there was the disability rights movement, which geared people away from this medical view. However, many people still focus on the more traditional, medical model of disability.

Disability and Health

Those with disabilities tend to face health care disparities such as less access to adequate care, both in terms of promoting health and preventing diseases. Some people even go as far as labeling those with disabilities as a medically underserved population. There has been some research on how people with disabilities usually have a lower quality of health and are more likely to experience secondary conditions. Some examples of the health disparities include not having interpreters during medical examinations, adults with developmental disabilities being at risk for secondary conditions such as obesity, seizures, and cardiovascular disease, and women who have disabilities are less likely to get Pap tests and mammograms. Furthermore, some other issues include misconceptions and stigmas surrounding the word disability, shortage of suitable training, lack of proper medical equipment and facilities, lack of accessibility, and little to no individualized accommodations.

The Stigma

While there are medical advances over the years in regards to individuals with disabilities, there is a stigma surrounding people with disabilities. They tend to be seen as individuals incapable of making decisions or helpless. There are implicit or even unconscious biases against individuals who have a disability. Furthermore, there are several articles on how the medical community treats those with disabilities as having less value than non-disabled people. The medical interpretation of a disability is viewed as a pathological disorder and so this perspective focuses on how one can treat or cure it, rather than a social problem. In contrast to the medical model, there is the social model of disability, which focuses on how disability is formed from a social situation or construct, rather than a person’s characteristics. This viewpoint focuses on dividing impairment from disability, rather than recognizing that one is a component of the other.

The National Council on Disability says, “people with disabilities comprise the largest and most important health care consumer group in the United States, yet the Institute of Medicine and others have warned that Federal agencies, policymakers, and health care systems have not yet responded to the broad-ranging implications, for individuals, and for society, of the demographic increase in disability as the population ages.”

Health Insurance

Another barrier is that people with disabilities tend to lack health insurance or adequate coverage for healthcare. The National Council on Disability conducted research and found that few health care training programs address disability issues in their curriculum and most federally funded health disparities research do not look at people with a disability as a disparity population. Furthermore, while Medicaid and Medicare cover some people with disabilities, these programs do not cover those who have private insurance. Private group plan insurances are usually given through employers; however, not all employers offer health insurance and not all people who have disabilities are working. Those who have private group plans through their employer are required to cover basic care for the average working population. Medical equipment such as wheelchairs, ventilators, and crutches are limited in terms of annual payments.

Individual plans charge higher premiums to individuals with disabilities. Persons with emotional disabilities consist of those most uninsured, closely followed by persons with visual or hearing disabilities.

The three key elements of health care insurance are availability, affordability, and coverage for critical benefits. Important benefits can include long-term care, mental health, and medications. There have been national surveys that found people with disabilities have a hard time figuring out the insurance system, visiting specialists, and obtaining medical equipment that is durable. Additionally, numerous essential health care services can be out of their budget, meaning that they go without certain things because they simply cannot afford it.

According to the Journal of Disability Policy Studies, “estimates suggest that these factors obstruct or delay care for as many as 30 – 50 percent of adults with disabilities.”

The Henry J Kaiser Family Foundation conducted a national survey that found, “health insurance is inadequate for more than one in three people with disabilities who reported delaying care, skipping medication, or going without needed equipment because of cost.”

Accessibility

Accessibility can be broken down into many different components. The two main sections to focus on are communication and physical access.

Physical barriers are objects that are either natural or manmade that hinder or block mobility or access. These barriers can include inadequate transportation, accessibility to the facility and offices, and lack of accessible exams. Something as simple as getting a mammogram exam can provide numerous difficulties because the mammogram machine cannot adjust for height or health professionals are not adequately trained for lifting assistance. Thus, some health professionals conduct exams while patients are in their wheelchairs, which can yield inaccurate results. Other physical barriers include parking at the medical facility, entering the building, and the bathroom facilities, making it more difficult for someone with a disability to receive proper care.

Proper communication and education are required to make a change. Individuals with disabilities should feel they can discuss their challenges without fearing discrimination, while, those in the healthcare field should appropriately discuss, support, and address the challenges people with disabilities face. Research shows there is a lack of awareness and inadequate instruction among health care providers. For example in Connecticut, “91% of primary care physicians said they had no training in intellectual and developmental disabilities.” Without proper training, people tend to make assumptions about people with disabilities and often times they are incorrect. Some stereotypes include thinking that those with developmental disabilities cannot feel pain so they do not need anesthesia, people who are deaf have problems with their cognitive functioning because they are not fluent in standard English, or women who have disabilities do not need reproductive care because they are assumed to be sexually inactive. Making assumptions is not only harmful to the health of the patient but also it undermines who they are as a person. This can lead to damaging the patient-provider trust and provoke people with disabilities to not even bother to seek care. Ultimately, having access to appropriate health care can prevent new health conditions and could possibly stop current health conditions to worsen. In order to be effective and efficient, health care must be inclusive and accessible.

Keep up with the latest announcements related to the upcoming Symposium on Disability Rights by following the IHR on Facebook, Twitter, and Instagram.

Getting fitted out for a better future Omar (in the middle surrounded by his brother Rasekh, 10 and sister Majan, 8) was born with weak legs and hands since birth. They came to the Red Cross orthopedic clinic in Kabul with their father to get Omar fitted up for a wheelchair. Rasekh is in grade 4 and love Dari classes – he would like to be an engineer. Omar will have to be pushed around for the rest of his life, but his siblings are happy to support him to have a normal life – he hopes to start school soon. Aid from the UK is supporting the International Committee of the Red Cross (ICRC) to run a network of seven orthopaedic centres across Afghanistan to assist those affected by mobility disabilities, including hundreds of mine victims. The UK is to help provide 3,800 new artificial limbs and 10,000 crutches for Afghan children and adults disabled during 30 years of conflict and extreme poverty. UK Dept of Intl Development — Omar (in the middle surrounded by his brother Rasekh, 10 and sister Majan, 8) was born with weak legs and hands since birth. They came to the Red Cross orthopedic clinic in Kabul with their father to get Omar fitted up for a wheelchair. Rasekh is in grade 4 and loves Dari classes, he would like to be an engineer. Omar will have to be pushed around for the rest of his life, but his siblings are happy to support him to have a normal life, he hopes to start school soon. Aid from the UK is supporting the International Committee of the Red Cross (ICRC) to run a network of seven orthopaedic centres across Afghanistan to assist those affected by mobility disabilities, including hundreds of mine victims. The UK is to help provide 3,800 new artificial limbs and 10,000 crutches for Afghan children and adults disabled during 30 years of conflict and extreme poverty. Source: UK Department of International Development, Creative Commons

I am currently binge-watching Law & Order: SVU. In one episode, “Competence,” the rape survivor has Downs Syndrome (DS). Her mother, who is also her legal guardian, feels DS limits her ability to function “normally” in the world. The main concern of the mother is her daughter’s ability to care for the baby she is carrying as a result of the repeated rapes. The mother’s protection of her daughter extended only as far as she could be with her. Throughout the show, the revelation is that the store owner, where the daughter worked part-time as a stocker, exploited her disadvantage for his advantage. To limit the risk of the baby having DS and added to her belief in her daughter’s inability to care for the baby, the mother arranged an abortion of her daughter’s behalf. The courts stepped in and conducted a competency trial. Placed on the stand, the pregnant rape survivor acknowledged that once she did set fire to the kitchen but that she could now make soup because her boyfriend showed her. She also explained that even though she did not know how to care for a baby yet, she could learn if someone taught her.

As persons with disabilities (PWDs) move from the medical model into the social model in pursuit of independence, often overlooked are the role and needs of the caregiver. Society must begin to acknowledge and identify the paradigm shift occurring across the board. The purpose of this blog is to reflect on the role of parents and caretakers (also referred to as guardians) who attempt to bridge the gap between the medical and social models of disability while encouraging self-determination and protecting their loved ones in a created world that does not have them in mind.

The societal solution to PWDs was eugenics, institutionalization, or isolation–out of sight and out of mind for centuries. The employment of this solution allowed and continues to allow some guardians to abuse the system and take advantage of those in their care, and the pursuit of swift legal action is necessary. However, as societies move towards inclusivity, we must give encouragement and praise to those who through their actions look for avenues and solutions that empower. More specifically, we must continue to champion the guardians. With the implementation of the CRPD, standards of ADA, more universal design efforts, and competency hearings, PWDs are becoming productive members within their communities. So, what does this mean for their guardians who have sacrificed to protect their family member from the cruelty of an able-bodied world and the able-bodied world not used to making allowances for Others, particularly PWDs?

Who is a guardian? Persons with intellectual disabilities often have a legal guardian. The legal guardian acts in the “best interest” of their ward or the person in their charge. Much of the present debate regarding guardianship is the abuse of power in the denial of civil and human rights. In a 2007 study, Dorothy Squatrito Millar found that study participants did not recognize the disconnection between self-determination and guardianship or realize that there are several available alternatives to guardianship. Despite the arrival at the age of majority (18), students with intellectual disabilities did not receive the opportunity to self-advocate; rather, in many instances, they are given directions on what to do, or their guardian did the task for them. The inability to self-advocate as an adult is a denial of personhood, a violation of dignity. “We are adults. They need to accept that” and “they need to put themselves in our shoes sometimes” were some of the responses of the students.

What is notable about the SVU competency hearing is the assumption that all adults know how to care for a baby or balance a checkbook. The implication is that a person with an intellectual disability needs to have a guardian to avoid making any mistakes. As one non-disabled parent in Millar’s study put it, “We all make mistakes, and we all need help sometime—but that doesn’t mean we need guardians.” Most guardians resist the transition to adulthood and self-determination out of fear of exploitation, lack of information, and concern for their disabled child’s well-being. Millar concludes that while there is a significant need for more research on the transition to adulthood, the inclusion of children with intellectual disabilities into decision making throughout their lives does assist in the collaboration between other institutions in providing care that aligns with goals, imparts knowledge, addresses concerns, and maintains dignity and personhood.