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The Convention on the Rights of Persons With Disabilities: What Is at Stake for Physiatrists and the Patients We Serve

2014; Wiley; Volume: 6; Issue: 4 Linguagem: Inglês

10.1016/j.pmrj.2014.03.003

1934-1563

Marca Bristo, Cheri Blauwet, Walter R. Frontera, Dorothy W. Tolchin, Michael Ashley Stein, Kurtis M. Hoppe, Sam S.H. Wu, Kristi L. Kirschner,

Disability Rights and Representation

Where, after all, do universal human rights begin? In small places, close to home, so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual persons; the neighborhood he lives in; the school or college he attends; the factory, farm or office where he works. Such are the places where every man, woman and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Eleanor Roosevelt, The Great Question. United Nations, 1958 1 In 1945, in the aftermath of World War II, former First Lady Eleanor Roosevelt (and wife of our first president with a disability when elected) was appointed by President Harry Truman to chair the United Nation's (UN) Human Rights Commission. By all accounts, she relished the experience and recognized the moral force that a Universal Declaration of Human Rights could have in establishing international norms. In 1948, the UN Assembly adopted the Declaration. What followed over the subsequent decades were a series of UN human rights treaties and conventions that called out and underscored that various vulnerable populations (such as children, women, racial minority groups) deserved human rights protections too. Whereas, a UN declaration was intended to be aspirational and not legally binding, such was not the case with a human rights convention or treaty 2. In addition to being a commitment to the international community, a convention also would require appropriate oversight and monitoring and reporting of the signatory countries. Unfortunately, concerns about national sovereignty have often impeded U.S. Senate ratification of UN human rights conventions, including the Convention on the Elimination of All Forms of Discrimination against Women, the Convention on the Rights of the Child, and, more recently, the Convention on the Rights of Persons with Disabilities (CRPD) 3. Attention to the rights of people with disabilities has gained traction since the 1970s, both in the United States and internationally. In 1971, the UN General Assembly adopted The Declaration on the Rights of Mentally Retarded Persons, followed 4 years later by The Declaration on the Rights of Disabled Persons 4. A push for civil rights laws for people with disabilities in the United States began in the 1960s, which culminated in such landmark legislation as Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA) in 1990. Not surprisingly, those who helped to draft the ADA in the United States also became leaders in the international movement for disability civil rights and helped to craft the language for the UN CRPD. The document, whose stated purpose is "to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity" 5 was adopted by the UN in 2006 and has been ratified by 141 countries to date 4. Despite being signed by President Obama in 2009, efforts to obtain the supermajority (two-thirds or 66 votes) needed for U.S. Senate ratification have thus far fallen short. The reasons for opposition include concerns that the CRPD will infringe on parental rights, endorse abortion rights, and compromise U.S. sovereignty. To learn more about these issues, please see the fact sheet prepared by the U.S. International Council on Disabilities that addresses these concerns (http://www.usicd.org/doc/CRPD%20MythsFacts%200719%202013.pdf). To tackle these questions, I invited the following commentators: Marca Bristo, Cheri A. Blauwet, MD, Walter Frontera, MD, PhD, Dorothy Weiss Tolchin, MD, EdM, Michael Ashley Stein, JD, PhD, Kurtis M. Hoppe MD, Sam S. H. Wu, MD, MA, MPH, MBA. As always, I welcome your comments, critiques, and suggestions for future columns. On a trip to Berkeley, California, in 1978, my life changed forever. I was young and newly disabled with a spinal cord injury. I was a nurse practicing at Northwestern Hospital. What I saw in Berkeley was an entirely new paradigm for what people with disabilities should expect and demand from their lives. What I witnessed was the nascent global movement of independence, accommodation, and inclusion for people with disabilities. When I returned home, I joined Henry Betts, MD, and a group of clinicians at the Rehabilitation Institute of Chicago. When facing the reality that social barriers blocked the possibility of rehabilitating people with disabilities to full participation and potential, rehabilitation professionals began to listen to disabled consumers in a different way. The field of physical medicine and rehabilitation paved the way for the disabilities rights movement and that partnership remains an essential part of the fight for the rights and quality of life for one billion people with disabilities across the planet. Dr Betts and his team helped found Access Living, a center for independent living in Chicago, Illinois, where I have been president and chief executive officer since its inception. I cofounded the National Council on Independent Living and served as chairperson of the National Council on Disability. Today I am president of the U.S. International Council on Disabilities. I am proud to be part of the movement of people with disabilities that passed the ADA, the Individuals with Disabilities Education Act, the Air Access Act, and amendments to the Fair Housing Act. Around the world, people with disabilities, advocates, medical professionals, and governments now look to the United States for guidance on how to move from discrimination and prejudice to full participation of disabled persons in society. The CRPD is awaiting ratification by the U.S. Senate. To date, 141 countries have ratified the convention, which calls for the inherent dignity, autonomy, and independence of all persons, full social participation, equal opportunities and access for one billion people with disabilities around the world 1. Leadership by the United States is critical to meet those goals. "U.S. ratification of the UN Convention on the Rights of Persons with Disabilities will stand as a reminder to our government of the importance and relevance of the UN Convention to the entire world," said Obadiah T. Moyo, president, Zimbabwe Disability Rights Organization, which echoes the sentiments of disability advocates everywhere 2. In countries with life expectancies of more than 70 years, individuals spend an average of approximately 8 years, or 11.5%, of their life span living with disabilities. Eighty percent of persons with disabilities live in developing countries. Mortality for children with disabilities may be as high as 80% in countries where under-five mortality as a whole has decreased below 20% reports the United Kingdom's Department for International Development, adding that, in some cases, it seems as if children are being "weeded out." UNESCO reports that 90% of children with disabilities in developing countries do not attend school. Thirty-five percent of working-age persons with disabilities are in fact working, compared with 78% of those without disabilities. Only 45 countries have antidiscrimination and other disability-specific laws 1. The numbers are overwhelming; the human stories are even more compelling. As former U.S. senator Bill Frist, a physician and staunch supporter of the CRPD, relates, "In an HIV [human immunodeficiency virus] clinic in Africa, a man born deaf holds a single sheet of paper with a plus sign. He looks for help, but no one at the clinic speaks sign language. In fact, the staff doesn't seem interested in helping him at all. He returns to his plus sign. These are his test results. They dictate he should start antiretroviral drugs immediately and should also make changes in his sexual habits. But he doesn't know this. He leaves the clinic concluding that the plus sign must mean he's okay, that everything is just fine" 3. There are, quite literally, a billion stories. Ten-year-old Gisele has grown up being told she was cursed by God. She was paralyzed from the waist down when she was an infant. She lives in a rural area of Guinea and spends all day at home, often sitting motionless for hours. In Togo, children who have cerebral palsy and cannot stand are called snakes because they lie on the ground and may be left to drown as a cure 4. The CRPD will not change U.S. law in any way, nor will it have any impact on parental rights here, contrary to what has been claimed by opponents. What it will do is help make the world more accessible to American veterans, disabled workers, and professionals, and create opportunities to market new technologies. That is why more than 800 organizations support ratification of the convention, including virtually every organization that represents people with disabilities, the American Legion, and the U.S. Chamber of Commerce. The campaign for ratification is a bipartisan effort, with key support from Republican senators John Barrasso (Wyoming), John McCain (Arizona), Mark Kirk (Illinois), and Kelly Ayotte (New Hampshire). Despite this leadership and support from prominent Republicans, such as former president H. W. Bush, former attorney general Richard Thornburgh, and former senator Bob Dole, politics has prevented ratification up to now. But we are close and expect another vote of the Senate this year. It is time for the United States to make a bold and decisive statement to the world about the rights of people with disabilities. As Tom Ridge, former secretary of homeland security said, "I had the unique experience to understand how the U.S. is perceived by our enemies and our allies alike… this treaty will enhance, not lessen American sovereignty by allowing us to support American constitutional abroad" 5. For further information on the treaty and to learn how you can help, go to disabilitytreaty.org. According to the World Report on Disability, people with disabilities constitute at least 15% of the world's population, yet remain one of the most hidden and marginalized of all minority groups 1. The CRPD is an international treaty that outlines a common set of human rights principles and standards that apply to all people with disabilities 2. Developed through a consultative process with leaders from the disability community, the CRPD seeks to create a global paradigm shift in which people with disabilities are seen as individuals with rights rather than objects of charity. Inherent to this shift is a transition out of the "medical model" of disability and the implementation of a new paradigm, such as the World Health Organization International Classification of Functioning, Disability and Health, in which disability is seen as a complex interaction between a person and his or her environment 3. Since its adoption by the UN in 2006, the CRPD has been open for signature and ratification by all UN member nations. The United States has been given the opportunity to ratify the CRPD, and, for several reasons, it is our position that the U.S. Congress should do so. First, the ADA of 1990 exists to uphold standards of nondiscrimination and equal opportunity in the United States, one of the most progressive examples of disability rights laws in the world. In many countries, people with disabilities remain subject to extreme discrimination and lack the legal framework to uphold their own rights. Ratification of the CRPD by the United States would inherently bolster the international disability movement and provide the opportunity to lead by example. Second, ratification of the CRPD gives UN member nations permission to be involved in the hands-on process through which tenets of the CRPD are implemented and monitored. Conversely, a nation that does not ratify the CRPD risks missing the opportunity to participate in this process (thus having no seat at the table in these discussions!). For the United States to remain an international leader in the disability movement, ratification of the CRPD is essential. Although issues of international disability rights may seem remote to many physiatrists, we would argue that support of the CRPD is important for both individual practitioners in the United States as well as for the AAPM&R. The 2010 U.S. Census indicates that 56.7 million civilian, noninstitutionalized Americans, or 18.7% of the population, are individuals with disabilities 4. In addition, most Americans will experience disability at some point in life, and disability rates rise dramatically with age. Although our health care system has come far in addressing the needs of this population, the health disparities that persist for Americans with disabilities provide evidence that we need to do more 5. To address these disparities, physiatrists are best positioned to embody the tenets of the CRPD in daily practice and thus be an example to others in medicine. A brief examination of the text of the CRPD supports this. Article 25: Right to Health, Article 26: Right to Habilitation and Rehabilitation, and Article 30: Right to Participation in Cultural Life, Recreation, Leisure and Sport all serve to embolden physiatrists to continue our core work of ensuring that patients have access to accessible, affordable health care, and opportunities to promote personal health and well-being throughout the life span 2. Simply put, the CRPD is fully compatible with physiatry's mission and objectives. Although the AAPM&R has previously been involved in advocacy initiatives to support the CRPD, now is the ideal time to renew this organizational commitment and bring together the voices of individual physiatrists from across the country. Another important consideration in support of the CRPD is the potential it holds to promote the inclusion of people with disabilities in medicine, thus leading to true and meaningful cultural competency in health care. Currently, fewer than 1% of the total population of U.S. medical students have a physical or sensory disability 6. Students with disabilities often remain subject to various forms of hidden or overt discrimination during the process of medical school application and matriculation. For mid-career physicians, experiencing a disability later in life can often be seen as a career-ending life change. This problem is potentiated by challenges in structural access to health care settings (for both patients and practitioners) as well as overwhelming stigma. People in general may incorrectly assume that a person with a disability does not have the physical or intellectual rigor to become or continue to practice as a physician. As the disability rights movement continues to grow under the guiding principles of the CRPD, it is expected that a generation of increasingly empowered young people with disabilities will develop outside of the medical model of disability. These young leaders may desire a career in medicine, and success stories of physicians with disabilities will serve as an important catalyst for the expansion of opportunities. As physicians, we prioritize and highlight our diversity in realms of gender and ethnicity, to name a few. Diversity in the health care workforce is considered essential to ensure that all physicians are able to provide empathetic care to an infinitely broad variety of patients, regardless of minority status. In addition, working alongside peers with different backgrounds hastens a sense of common understanding and reduces bias among physicians 7. Ultimately, the presence of people with disabilities in medicine may prove to be one of the most profound ways of ensuring that all physicians are prepared to empathetically and respectfully address their patients with various types of impairments. As people with disabilities constitute nearly 19% of our U.S. population and yet only a very small proportion of medical school trainees and practicing physicians, further aggressive efforts are needed to recruit and retain people with disabilities in medicine and science. In sum, now is the time for physiatrists and the AAPM&R to utilize the CRPD to its fullest capacity in creating broad, systemic change that promotes the full inclusion of people with disabilities in health care and in society. Well-known disability advocate Simi Linton recently stated that the rallying cry of the disability movement has transitioned from "nothing about us, without us" to instead simply "nothing without us" (S. Linton, personal written communication, February 2013). This powerful message indicates that the disability perspective is important in all aspects of society, and people with disabilities must have a prominent and empowered voice to fully realize their potential while also creating a more just and equitable world that embraces human diversity. The CRPD serves as a beacon toward this goal; however, it must be fully enacted and enforced by governments, national and international associations, and individual citizens to achieve its full impact. The CRPD is a landmark international human rights treaty that recognizes the legal, ethical, social, and economic imperative for including people with disabilities in all aspects of society. Of particular relevance to the medical community are Articles 25 and 26, which mandate equal access to health care and habilitation and/or rehabilitation 1. States that ratify the CRPD are obligated to respect the inherent dignity of individuals with disabilities by creating an accessible, nondiscriminatory society. They are subject to international monitoring by the UN Committee on the Rights of Persons with Disabilities. The United States signed the CRPD in 2009 but has not ratified it. Thus, the United States endorsed the principles of the CRPD but has not committed to enforcement. AAPM&R is one of more than 800 advocacy organizations that have urged ratification. By ratifying it, the United States would accept responsibility for human rights protections on an international stage and could serve as an example for other nations to ratify and meaningfully enforce the CRPD. If the United States ratified the CRPD, its domestic legal standards would not substantially change. Existing American civil rights laws already prohibit discrimination in domains that include employment, communication, access to public places, and education. Importantly, the CRPD requires fulfillment not just of civil rights (government-granted, legally protected personal freedoms) but also of human rights (the spectrum of fundamental rights conferred by virtue of being human that enables people to live with dignity, eg, access to an adequate standard of living). Human rights can include civil rights and also include economic, cultural, and social rights. To fully operationalize the CRPD, the United States would need to embrace the full spectrum of human rights and embrace the perspective that people with disabilities can live lives of equal value to people without disabilities. Specifically, it would need to use the principles of dignity, autonomy, and full participation to promote social inclusion and mitigate barriers to that inclusion 2. We believe that, by adopting these principles from the CRPD, the United States could reduce health care disparities, improve employment rates, and increase participation of people with disabilities in a variety of activities. Individuals with disabilities would become healthier and happier, and better poised to contribute to society as a whole. The U.S. Congress' general ambivalence to signing any human rights treaties, among other factors, has delayed U.S. ratification of the CRPD. Thus, the United States remains committed to the protection of civil rights for people with disabilities but is not actively promoting the spectrum of other rights that would facilitate full societal inclusion 3. We believe that, regardless of the U.S. ratification status, if physiatrists use the principles of the CRPD as a transformative standard for their practice, they could become the agents of change necessary to improve access to resources for people with disabilities domestically and internationally. The CRPD articulates a rights-based framework that blends naturally with physiatry's emphasis on helping patients with disabilities mitigate societal barriers (both physical and attitudinal) to enjoy improved independence and participation in daily activities. We believe that it is appropriate for physiatrists both individually and collectively via the AAPM&R to advocate for passage of the CRPD. We consider this advocacy a means of broadening the impact of physiatry's mission. So how can physiatrists individually and via the AAPM&R apply the CRPD's rights-based framework, and how can individuals and the AAPM&R advocate for the ratification of the CRPD? Physiatrists can begin to implement the principles of the CRPD by (1) empowering patients to participate fully in their own health care, and (2) educating trainees and colleagues in a human rights–based approach to care for people with disabilities. Physiatrists can raise patient expectations for their own health care by modeling the highest standard of care. The highest standard of care consistently respects dignity, autonomy, and full patient participation in decision making, which includes allocating more office time for histories and physical examinations as needed, providing information in a range of accessible formats, and obtaining truly informed consent from patients 4. In addition, although physiatrists see patients with disabilities for specialty rehabilitative care, physiatrists also have the opportunity to improve overall health outcomes. One example is in improving low rates of routine health screening for people with disabilities by teaching patients about screening schedules and providing referrals to primary care physicians with accessible offices and equipment. Another example is improving low rates of domestic abuse reporting among people with disabilities by screening, reporting, and providing resources for patients. Readers of this article can likely imagine many additional ways that physiatrists can use their empathic, holistic relationships with patients to engage and motivate those patients. Physiatrists also are poised to educate trainees and colleagues about disability-related issues. An important strategy is modeling the behaviors they wish to see. For example, use of people-first language such as "person with a disability" as opposed to "disabled person" reinforces the humanity of a person separate from impairments or special needs. During inpatient team meetings, the physiatrist can review each care plan to assure that each patient has participated in decision making as much as possible, consider aloud whether a care plan respects a patient's dignity, and confirm that a patient with a new disability has been educated about his or her disability rights before leaving the rehabilitation hospital. Physiatrists also ought to hold their medical students, residents, and fellows accountable for sensitively obtaining information from patients, examining patients appropriately, knowing about disability-specific patient needs in the health care system, optimizing independence and community participation, and understanding the relevance of the current disability policy for patients. Physiatrists can enhance the quality of their teaching by partnering with individuals with disabilities who are willing to share personal experiences with students 5. On a larger scale, physiatrists can advocate for a human rights–based approach to care by speaking and writing locally, nationally, and internationally about the unrealized needs and rights of people with disabilities. We invite you to review the Harvard Law School Project on Disability Web site (hpod.org), which offers free training materials and scholarship about the CRPD and human rights. We encourage the AAPM&R to support clinicians in taking increasing responsibility for a rights-based approach to patient care. One way to do this is by prioritizing the rights-based approach in clinician education, for example, by including the topic in the KnowledgeNOW section on patient advocacy and providing related lectures at conferences. In addition, the AAPM&R can recommend the inclusion of a human rights perspective in medical student and residency training, and provide funding and mentorship for trainees and educators to conduct research and educational initiatives in this field. Finally, the AAPM&R should include individuals with a range of disabilities in the process of setting priorities for its educational and advocacy agendas. For individual physiatrists who want to advocate for ratification, we suggest learning more about the movement for ratification and contributing to advocacy efforts through the venues that they see most fit. We welcome their advocacy through the Harvard Law School Project on Disability as well. We also encourage physiatrists to participate in any efforts made available by the AAPM&R. The AAPM&R can leverage the physiatry community's unique knowledge of the challenges that their patients face in accessing resources and can highlight to Congress the importance of a human rights approach to granting people with disabilities full access. The AAPM&R's lobbying power could be further enhanced by collaboration with advocacy organizations that include people with disabilities themselves. Overall, the more the AAPM&R educates its members about the CRPD and its support for it, the more it can inspire others to support ratification. We encourage physiatrists, by virtue of their clinical experience, to lead the medical community in the ongoing effort to secure equal access to health care and other resources for people with disabilities. We laud the AAPM&R's support for U.S. ratification. As we await ratification, physiatrists can start making meaningful change now by using the CRPD as a framework by which to improve service delivery for people with disabilities. Physiatrists have enormous potential to set a standard for the treatment of people with disabilities within the medical community and in society at large. The battle for human rights has been long-standing and grueling. Be it equal rights for racial minorities in the United States or for gender equality worldwide, many individuals have toiled to achieve recognition of a simple fact about human beings: we all want to be respected and live in dignity. This truth is also apparent in the long struggle to gain acceptance of those who have physical and psychological disabling conditions and for whom discrimination was a fact of life. According to the UN, persons with disabilities represent the world's largest minority and are increasing in numbers through population growth, medical advances, and aging 1. Women and children with disabilities are disproportionately affected, which leads to lower educational attainment; increased vulnerability to abuse, poverty, and economic deprivation; and higher mortality. Unfortunately, 80% of persons with disability live in developing countries, where 90% of children with disabilities do not attend school. Warfare and civil violence contribute to the growing population of those permanently disabled and, in turn, worsen the plight for all persons with disabilities in those regions. The United States has enjoyed numerous achievements in the past few decades in ensuring the participation of all citizens in its social and economic activities. The Civil Rights Act of 1964 outlawed discrimination of racial and ethnic minorities and women in employment as well as in housing. The Rehabilitation Act of 1973 provided grants to states to allow vocational rehabilitation for those who qualify, especially those citizens with the most severe disabilities. In addition, the following 2 important federal laws contributed significantly to the expansion of services and opportunities for children and adults with disabilities. Equal access to education for disabled children was initially enshrined in 1975 in the Education for All Handicapped Children Act. Fifteen years later, the Individuals with Disabilities Education Act was enacted by the U.S. Congress in 1975 to ensure that children with disabilities have equal opportunity to receive a free appropriate public education 2. This law has been amended many times over the years and now governs how states and public agencies administer early intervention, special education, and related services to more than 6.5 million eligible infants, toddlers, children, and youth with disabilities 3, 4. Under this law, infants and toddlers with disabilities (birth to 2 years old) and their families receive early intervention services, and youth (3-21 years old) receive special education and related services 4. CRPD is of great importance to the field of physical medicine and rehabilitation because it represents the culmination of decades of work to change attitudes and approaches to persons with disabilities. CRPD catapults to the public's consciousness the movement to change the perception of persons with disabilities as "objects" of charity and to transform medical treatment and social protection toward viewing persons with disabilities as "subjects" with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society 8. Moreover, the principles of CRPD, in general, reflect U.S. federal laws that pertain to persons with disability. Importantly, support of CRPD by American physicians, particularly physiatrists, is in alignment with our practice to help patients achieve their maximum independence in the least restrictive environment. The opposition to U.S. congressional approval of the CRPD has been disheartening, given the country's leadership in enacting prior legislation that protects the rights of persons with disabilities. The U.S. risks losing its preeminence in defending these rights when participating in international forums, its ability to influence the development of further conventions to protect human rights, and the opportunities to learn from others around the world as we seek inclusion for all. The AAPM&R has supported passage of the CRPD as well as the more recent World Health Organization disability action plan. It remains incumbent upon AAPM&R members to advocate for the CRPD with their respective U.S. senators, and to join efforts with other advocates of persons with disabilities to educate state and federal legislators on the importance of inclusion and participation for all of their constituents regardless of disabilities. To remain relevant to patients and their families, and to be partners in ensuring full participation for all at home, school, and work, we as physiatrists in the United States have a duty to support all efforts, domestically and internationally, to promote full participation in life and to encourage liberty and the pursuit of happiness by all individuals.