…And When Will All People Have the Rights They Deserve?
An Analytical Comparison of the Past and Current Situations of People with Motor Disabilities in
Chile and The United States
“With the strength of the heart.”
Volunteering with Teletón
Valparaíso, Chile
March – July 2011
“Fighting for equal access to life itself.”
Pima Community College West Campus
Tucson, AZ U.S.A.
January 2012
2
Name one person who does not deserve to enjoy their basic human rights. That’s hard to
respond to, isn’t it? Because we are all human and thus, according to the Universal Declaration
of Human Rights adopted by the United Nations in 1948, we are all entitled to the right to life,
liberty, property, legal protection of our rights, social security, health care, freedom of movement
throughout the world, education, a decent standard of living, just employment and pay, rest,
marriage, family, and participation in the governmental and cultural activities of our society.1
Nevertheless, countless human rights violations still occur throughout the world and the most
frequent, widespread, and dangerously overlooked of them all are those committed against
people with disabilities.2, 3, 4 Perhaps the eighty-five percent of the world without a physical or
mental disability feels this is an issue that does not concern them.5 The truth however, is that it
does. Almost all of us will experience a disability and will interact with people that have
disabilities at some time in our lives. 6,7 As fate would have it, that time in your life…is now.
One week of hospitalization later you’ve come to accept yourself as a person with a
disability. You’ve put that car accident behind you, but now you must face the unsettling
challenge of adjusting to life in a wheel chair. Your parents, however, don’t want you to have to
adjust to life with a motor disability on your own, and think things would be easier if you left
your residence in the United States and came back home to Chile. They emphasize the strength
of Chile’s national solidarity on behalf of its people with motor disabilities and its worldrenowned Teletón rehabilitation services. Overwhelmed and unsure of whether to remain in the
United States or return to Chile, you resolve to do some research on the past and current
situations of people with motor disabilities in both countries and then make a decision. Your only
hope is that what you learn will be promising enough to give you at least some semblance of
your old life back. After all, you’re now a person living with a disability. Your future quality of
3
life and the enjoyment and protection of your human rights are on the line. There’s no time to
lose. Let the investigation begin.
Disability became an issue in the United States upon the nation’s founding in 1776. From
then until 1848, America was relatively empathetic and supportive in working to understand and
meet the needs of its people with disabilities.8, 9,10 In contrast, the following eight decades of
America’s history from 1848 – 1934 were tainted with rampant human rights violations. During
that time, foreigners with disabilities were denied entry to the United States, while Americans
with disabilities were subjected to mass institutionalization and institutional abuse, prohibited
from marriage and parenting, and forcibly sterilized.11, 12,13 These abominable yet legally
encouraged segregation and eugenics practices were carried out as social control measures to
“protect and preserve” America. In time America would decide to reform its atrocious disability
policy, but only after rising numbers of Americans with disabilities acquired from World War I
(1914-1918), World War II (1941-1945) and America’s polio epidemics (1916; 1945-1955), in
addition to the chilling disclosure that American eugenics had influenced the Nazi genocide,
made it something the United States no longer could afford to neglect.14, 15,16
The adversity that the disability community faced at that time was inconceivable. Yet
starting in the late 1930s, Americans with disabilities proved over and over again that nothing,
not even the most terrifying adversity, was strong enough to hold them and their allies back.17 In
particular, the creation of the American Federation of the Physically Handicapped in 1940 gave
Americans with motor disabilities the opportunity to begin lobbying for their rights at the
national level.18 Throughout the 1940s other associations such as the National Paraplegia
Foundation and United Cerebral Palsy (UCP) were established to provide disability related
services and resources to Americans with a broad range of motor and developmental disabilities
4
as well as to help support rehabilitation, vocational rehabilitation, and independent living
initiatives throughout the country.19,20 In 1950, the concept of the telethon was created by UCP,
which held its first of what would later become an annual event to raise awareness and funds on
behalf of Americans with motor and developmental disabilities.21 The 1950s also brought about
several amendments to the Social Security Act of 1935 so as to give Americans with disabilities
better access to societal benefits and services otherwise withheld from them by the nation’s
countless attitudinal and environmental barriers.22 The disability community would not enjoy
real justice though, until the onset of the Disability Rights Movement in the 1960s.23
The first step of the Disability Rights Movement was the deinstitutionalization of
Americans with disabilities beginning in 1963.24 After that, disability activists and their allies
joined together to speak, testify, write letters, lobby, and peacefully protest for the creation of
national civil rights legislation that would finally guarantee equality and justice to all Americans
with disabilities.25 The movement worked especially hard to help American society understand
that what the disability community needed was not charity but the protection of its human rights;
not cures but accommodation and acceptance; not dependency on governmental welfare
programs but access to benefits and services needed for its people to live self-sufficient, full, and
productive lives; and finally not isolation but integrated independence.26, 27 Throughout the
1960s, 1970s, and the beginning of the 1980s, significant disability legislation was passed to
remove attitudinal and environmental barriers and to help protect the rights of Americans with
disabilities with regard to marriage, family, social security, education, employment, and health
care (in the forms of Medicare and Medicaid).28,29 Yet, in spite of these legislative victories, the
disability community still found itself having to constantly defend the existence and enforcement
of disability legislation and government supported disability programs and services. 30
5
As a result, in1990 the Americans with Disabilities Act (ADA) was finally passed to give
the disability community full legislative protection of its constitutional rights.31 The ADA
ensured that qualified Americans with disabilities would not be denied participation in or the
benefits of the services, programs, and activities of a public entity because of their disability.32 If
a public entity was not accessible to people with disabilities, it was now required by law to make
accommodations so that all people could access it.33 Thus, according to the ADA, Americans
with disabilities were guaranteed equal access to all aspects of public life including recreation,
health care, education, employment, housing, and transportation.34 Without a doubt the ADA and
recent disability legislation have greatly improved the quality of life of Americans with
disabilities.35, 36 However, despite this improvement, it is still painfully obvious that Americans
with disabilities do not experience equal enjoyment and protection of their fundamental human
rights.37, 38
Disabilities were certainly present in Chile upon the nation’s founding in 1810, but they
would not be considered an issue of governmental concern until much later. In contrast to early
American disability policy, Chilean disability policy was dictated not by governmental
antagonism and widespread public abuse but by governmental neglect and community care. By
1924, Chile’s social security system was established, but the only disability issues it addressed
were disability prevention, and compensation for disabilities acquired in the workplace.39, 40
Furthermore, under Chile’s Immigration Law of 1953, people with disabilities were denied entry
to Chile simply because they were perceived as incapable of working.41 Thus, it is likely that
until this provision was amended in 1975, the grand majority of Chileans with disabilities were
also discouraged from working and had to rely heavily upon the care of their families.42,43 In fact,
Chileans with disabilities would not receive any governmental accommodations to compensate
6
for their society’s attitudinal and environmental barriers until social security was reformed in the
1960s to provide all family dependents with regular monthly subsidies.44
What transformed disability into a prominent issue of public interest was the Chilean
polio epidemic of 1945 – 1970.45 In response to the rising numbers of Chilean children left
paralyzed from the disease, an innovative group of doctors, parents and educators came together
to create the Society for Crippled Children’s Aid in 1947.46 The society’s goal to provide
rehabilitation to these children was made possible in 1961 when the American medical specialty
of physical medicine and rehabilitation was established in Chile.47,48 Although polio-induced
paralysis occurred more than ten times as often in adults than in children, both Chile and the
United States originally chose to focus on child rehabilitation.49,50,51 Yet, while the United States
would also provide rehabilitation services to adults of all ages, Chile would narrowly limit its
rehabilitation services to children and young adults.52,53
In 1978 the concept of the American telethon on behalf of children living with disease
and disability was brought to Chile by Chilean television personality Mario Kreutzberger.54 In
partnership with the Society for Crippled Children’s Aid, Kreutzberger hosted the first of what
would soon become Chile’s annual Teletón (telethon) campaign to raise funds for the
rehabilitation of its young people with motor disabilities.55 Chile’s telethon may have been
modeled after the American March of Dimes (est. 1938) and Muscular Dystrophy Association
(est. 1966) benefits, but unlike those fundraising campaigns the Chilean telethon would neither
pity disability nor portray it as an illness that needed to be eradicated or cured.56,57,58 Instead,
Chile’s telethon would treat disability as an issue deserving of great empathy and national
solidarity, and the funds it raised would be primarily used not to find a cure for young people
7
with motor disabilities but to give them, free of charge, the rehabilitation and social inclusion
services they needed to live full and independent lives.59
Chile’s annual Teletón campaign soon evolved to include a national Teletón foundation
and the development of Teletón rehabilitation centers throughout the country.60 However,
Teletón’s work was initially weakened by the dictatorship of Augusto Pinochet (1973 – 1990), a
time when Chile’s social services and human rights standards were greatly compromised.61, 62,63
Consequently, throughout the years of the dictatorship, Chilean society lacked much of the
trained disability personnel and material resources it needed to make real improvement to the
situations of poverty and exclusion experienced by Chileans with disabilities.64 The government
may have created a welfare pension for its people with disabilities in 1975, but the pension was
negligible, incompatible with any form of income, and subject to constant review.65,66 It was not
until 1994 that Chile’s disability policy was finally improved with the establishment of Chile’s
National Disability Fund (later transformed into the National Disability Service in 2010) and its
first disability legislation, known as the Law of Social Integration of People with Disabilities.67,68
Beginning in 2006, Chile’s health care and social security systems underwent legislative reform
to better address the needs of all Chileans in situations of disease or disability.69,70,71 These laws
and other recent Chilean disability legislation include the same provisions as American disability
legislation. Yet, as is the case for Americans with disabilities, Chileans with disabilities still
experience a substandard quality of life and unacceptable human rights violations.72
Currently, an estimated 54.4 million Americans, or 17.3 % of the American people, and
2.5 million Chileans, or 14.6% of the Chilean people live with a disability.73, 74,75,76
Approximately 24.4% of these Americans and 31.0% of these Chileans with disabilities live with
a motor disability.77, 78 But what does living with a motor disability in modern-day Chile or the
8
United States really mean? As just a brief overview of the facts will illustrate, it means having to
fight for equal access to life itself.
Americans and Chileans are guaranteed the right to freely live in their homes with their
families.79, 80 Yet, 4% of Americans with disabilities are still institutionalized.81, 82 Disability
advocates believe this statistic is four percent too high and continue to fight for community based
independent living.83 Their condemnation of America’s unwanted and unnecessary
institutionalization of people with disabilities is remarkably supported, however, by the fact that
for every one of Chile’s institutionalized people with disabilities, the United States has nearly
three hundred more.84,85,86,87 Not all Chileans with disabilities live with their families or relatives,
but 99% do.88
Americans and Chileans are guaranteed the right to freedom of movement throughout the
world and to participation in the governmental and cultural activities of their society.89, 90
However, according to a recent Chilean statistic, 70% of Chile’s public buildings are
inaccessible to people with motor disabilities.91 Furthermore, 750,000 Chileans with motor
disabilities living in Chile’s metropolitan region alone say they cannot access public
transportation.92 In contrast, 98% of America’s transit buses are accessible to people with motor
disabilities.93 Not all of the United States’ public buildings and means of transportation are
accessible to everyone, but fortunately most of them are.94
Americans and Chileans are guaranteed the right to education, just employment and pay,
and a decent standard of living.95, 96 Yet, the statistics show that 60.3% of Chileans and 23.9% of
Americans with disabilities do not have a high school education.97, 98 Furthermore, only 10.0% of
Chileans and 36.0% of Americans with disabilities are employed.99, 100 On average, 12.0% of
Americans and 11.5% of Chileans live below the poverty line.101 Yet, 26.4% of Americans and
9
56% of Chileans with disabilities live in poverty.102,103 Perhaps these low employment rates and
qualities of life have something to do with the fact that a qualified American with a disability has
only a 1% chance of getting a job when compared to people with similar qualifications, and the
fact that less than 1% of Chile’s metropolitan businesses employ workers with disabilities.104,105
Although the reason why American and Chilean societies choose to subject themselves to this
great an economic loss is unknown, considering the fact that the annual cost of such
discrimination against Americans with disabilities alone is now more than $450,000,000,000 in
lost productivity, taxes, and other public and private payments.106,107,108,109
Finally, Americans and Chileans are guaranteed the right to adequate social security and
health care.110, 111 However, only 28% of Americans with disabilities have access to the disability
social security and healthcare programs of Medicare and Medicaid, while 81% of Chileans with
disabilities have access to the Chilean equivalent of these programs known as the Basic
Solidarity Pension (PBS), Contribution Solidarity Pension (APS), and the Plan of Explicit Health
Guarantees (GES). 112,113,114,115,116,117,118 Both the American and Chilean programs provide
monthly subsidies to people with disabilities but they are not enough to live above the poverty
line.119,120,121,122,123,124 With respect to health care, the World Health Organization states that
worldwide people with disabilities are more than two times as likely to receive insufficient care
and three times as likely to be denied that care in the first place.125 Although Chile’s Teletón
currently provides rehabilitation to 84% of Chilean young people with motor disabilities, 94% of
Chileans with disabilities have not received comprehensive rehabilitation.126,127 Similarly, 40%
of Americans with developmental disabilities that are eligible for Medicaid’s waiver to
rehabilitation services have already been waiting more than seven years for these precious
services and they are still waiting.128 Meanwhile, tremendous cuts to America’s Medicare and
10
Medicaid programs continue to be made and many states are threatening to cut back on their
already deficient services.129
Your research is now over, but your concerns definitely aren’t. Americans with motor
disabilities may experience a better quality of life with respect to poverty, rehabilitation,
education, employment, and public access, while Chileans with motor disabilities may
experience a better quality of life with respect to communal acceptance and integration, but the
bottom line is that people with disabilities in both countries still do not have equal enjoyment and
protection of their fundamental human rights. As a result, the quality of life of Chileans and
Americans with motor disabilities remains profoundly limited. You find it unacceptable that in
the twenty-first century both Chilean and American societies are not designed for you to enjoy.
Instead, they are still designed to define you and your life not by everything you can do, but by
what you can’t do. This daunting injustice may seem unimaginable, but it only took a car
accident to make it your reality. You ask yourself, does it have to be this way? Or, are there
enough people in the world willing to understand, willing to care about, and willing to help
change the situations of people with disabilities so that one-day all people will have the rights
they deserve? For your sake and the sake of more than one billion people living with disabilities
worldwide you certainly hope so.130
11
Endnotes
1. “The Universal Declaration of Human Rights.” Welcome to the United Nations. 2012.
http://www.un.org/en/documents/udhr/index.shtml.
2. “First National Study on Crime Against Persons with Disabilities.” Bureau of Justice
Statistics. October 1, 2009. http://bjs.ojp.usdoj.gov/content/pub/press/cap07pr.cfm.
3. “World Facts and Statistics on Disabilities and Disability Issues.” Disabled World. 2012.
http://www.disabled-world.com/disability/statistics/.
4. “Convention on the Rights of Persons with Disabilities.” UN Enable-Work of the United
Nations for Persons with Disabilities. 2006.
http://www.un.org/disabilities/convention/conventionfull.shtml.
5. World Report on Disability. Malta. 2011.
http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf.
6. Ibid.
7. Michael A. Rembis. “Disability Studies” International Encyclopedia of Rehabilitation.
2012. http://cirrie.buffalo.edu/encyclopedia/en/article/281/.
8. “The Rise of the Institutions 1800-1950.” Parallels in Time: A History of Developmental
Disabilities. Accessed March 27, 2012. http://www.mnddc.org/parallels/four/4a/1.html.
9. Amanda Hughes. “Writing About People with Disabilities in Colonial America.” Amanda
Hughes, Historical Adventures with Romance. July 2011.
http://www.amandahughesauthor.com/disabilities-in-colonial-america.htm.
12
10. “Disability History Timeline.” Rehabilitation Research & Training Center on
Independent Living Management. 2002.
http://isc.temple.edu/neighbor/ds/disabilityrightstimeline.htm.
11. Ibid.
12. David Pfeiffer, Ph. D. “Eugenics and Disability Discrimination.” Disability & Society 9,
no. 4 (1994): 481-99. http://www.independentliving.org/docs1/pfeiffe1.html.
13. Rebecca Leung. “America's Deep, Dark Secret.” CBS news. December 5, 2007.
http://www.cbsnews.com/stories/2004/04/29/60minutes/main614728.shtml.
14. “A Brief History of the Disability Rights Movement.” Anti-Defamation League. 2005.
http://www.adl.org/education/curriculum_connections/fall_2005/fall_2005_lesson5_history.
asp.
15. Edmund Sass, Ed. D. “The History of Polio: A Hypertext Timeline.” The Polio History
Pages. January 11, 2005. http://www.cloudnet.com/~edrbsass/poliotimeline.htm.
16. “The Horrifying American Roots of Nazi Eugenics.” George Mason University’s
History News Network. November 25, 2003. http://hnn.us/articles/1796.html.
17. See note 10 above.
18. See note 10 above.
19. See note 10 above.
13
20. “UCP Timeline of Achievements.” United Cerebral Palsy. 2012.
http://www.ucp.org/about/history/timeline.
21. Ibid.
22. See note 10 above.
23. See note 10 above.
24. See note 10 above.
25. Arlene Mayerson. “The History of the ADA: A Movement Perspective.” Disability
Rights Education & Defense Fund. 1992.
http://www.dredf.org/publications/ada_history.shtml.
26. Laura Hershey. “From Poster Child to Protester.” Crip Commentary.1993.
http://www.cripcommentary.com/frompost.html.
27. See note 25 above.
28. See note 10 above.
29. See note 12 above.
30. See note 10 above.
14
31. “The Americans with Disabilities Act.” The Center for an Accessible Society. 2000.
http://www.accessiblesociety.org/topics/ada/index.html.
32. “Americans with Disabilities Act of 1990, as Amended with ADA Amendments Act of
2008.” U.S. Department of Justice. June 15, 2009.
http://www.ada.gov/pubs/adastatue08.htm.
33. Ibid.
34. See note 32 above.
35. “Major Disability Legislation Timeline.” College of the Siskiyous. October 26, 2011.
http://www.siskiyous.edu/academics/classes/adhs2526/bhushan/Major%20Disability%20Le
gislation%20Timeline.pdf.
36. See note 31 above.
37. “National Disability Policy: A Progress Report - October 2011.” National Council on
Disability. October 31, 2011. http://www.ncd.gov/progress_reports/Oct312011.
38. See note 31 above.
39. “Seguridad Social en Chile.” Biblioteca Digital de la Universidad de Chile. Accessed
March 27, 2012.
http://mazinger.sisib.uchile.cl/repositorio/lb/ciencias_quimicas_y_farmaceuticas/medinae/ca
p3/9a.html.
15
40. “Prestaciones de la Seguridad Social en Chile.” Ministerio de Empleo y Seguridad
Social, Gobierno de España. 2012.
http://www.meyss.es/es/mundo/consejerias/chile/pensiones/SSArg.htm.
41. “Decreto Ley 521: Aprueba el reglamento para la aplicación del DFL no. 69, de mayo de
1953, que creó el departamento de inmigración.” Ley Chile. December 13, 1983.
http://www.leychile.cl/Navegar?idNorma=13968.
42. “Decreto Ley 1094: Establece normas sobre extranjeros en Chile.” Ley Chile. April 8,
2011. http://www.leychile.cl/Navegar?idNorma=6483.
43. “International Disability Rights Monitor (IDRM) Publications: Chile 2004.” IDEAnet.
2012. http://www.ideanet.org/content.cfm?id=535F.
44. Rex A. Hudson, ed. “Chile: Social Security.” U.S. Library of Congress.1994.
http://countrystudies.us/chile/45.htm.
45. Enrique R. Laval. “Anotaciones para la historia de la poliomielitis en chile.” Revista
chilena de infectología 24, no. 3 (June 2007): 247-50.
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46. “Preguntas Frecuentes” Fundación Teletón.2012. http://teleton.cl/preguntas-frecuentes/.
47. Loreto B. Vergara. “Desarrollo de la Medicina Física y Rehabilitación como
especialidad médica.” Rev Hosp Clín Univ Chile, 21 (2010): 281-8.
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oy/desarrollo_med_fis_y_reh.pdf.
48. “Servicio de Medicina Física y Rehabilitación.” Hospital Clínico Universidad de Chile.
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16
49. Anne C. Gawne, and Lauro S., Halstead. “Post-Polio Syndrome: Pathophysiology and
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50. See note 15 above.
51. See note 46 above.
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Chile Diario Electrónico. October 12, 2011. http://radio.uchile.cl/noticias/126338/.
53. See note 10 above.
54. “Fundación Teletón” Teletón Chile. 2012. http://teleton.cl/fundacion/.
55. See note 46 above.
56. Paul K. Longmore. “The Cultural Framing of Disability: Telethons as a Case Study.”
PMLA 120, no. 2 (March 2005): 502-08.
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57. “Franklin Roosevelt founds March of Dimes.” This Day in History. January 3, 2012.
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17
58. Julio F. San Martín. “Mario Kreutzberger. ‘Don Francisco’.” Prensa Festival. 2012.
http://www.prensafestivaldeviña.cl/detalle_noticia.php?&id=308.
59. See note 54 above.
60. See note 54 above.
61. Jonathan Kandell. “Augusto Pinochet, Dictator Who Ruled by Terror in Chile, Dies at
91.” The New York Times. December 11, 2006.
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ll.
62. Pilar Valenzuela. “Taller para Estudiantes de arquitectura acerca de Barreras
arquitectónicas y Urbanísticas.” Universidad de Chile Facultad de Medicina Terapia
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servicios para la atención de los multidiscapacitados con ceguera de base en Chile.”
Académicos Departamento Educación Diferencial U.M.C.E. June 1997.
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de Discapacitados. November 3, 2006.
http://www.fnd.cl/pensiones%20de%20invalidez%20y%20discapacitados.htm.
18
66. “Decreto Ley 869: Establece régimen de pensiones asistenciales para inválidos y
ancianos carentes de recursos.” Ley Chile. March 17, 2008.
http://www.leychile.cl/Navegar?idNorma=6386.
67. “Ley 19284: Establece normas para la plena integración social de personas con
discapacidad.” Ley Chile. February 10, 2010.
http://www.leychile.cl/Navegar?idNorma=30651.
68. “Ley 20422: Establece normas sobre igualdad de oportunidades e inclusión social de
personas con discapacidad.” Ley Chile. May 27, 2011.
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69. See note 66 above.
70. See note 65 above.
71. “Plan GES (ex AUGE).” Biblioteca del Congreso Nacional de Chile. May 18, 2011.
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72. “Discapacidad en Chile.” Fundación Nacional de Discapacitados. 2011.
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73. “20th Anniversary of Americans with Disabilities Act: July 26.” U.S. Census Bureau
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74. See note 72 above.
19
75. “North America: United States.” CIA-The World Factbook. March 12, 2012.
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77. Encuesta CASEN 2006: Discapacidad. Santiago: Ministerio de Planificación. 2006.
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78. See note 73 above.
79. See note 1 above.
80. “The Drafters of the Universal Declaration of Human Rights.” Welcome to the United
Nations. 2012. http://www.un.org/en/documents/udhr/drafters.shtml.
81. See note 37 above.
82. See note 75 above.
83. “Community Choice Act (CCA): A Community-Based Alternative to Nursing Homes
and Institutions for People with Disabilities.” ADAPT Free Our People! 2012.
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84. “Programas Sociales.” Fundación Rostros Nuevos. 2012.
http://www.rostrosnuevos.cl/programas-sociales/.
20
85. P.P. Marín, J.M., Guzmán, and A. Araya. “Estimation of the number of institutionalized
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86. “Nuestros Centros.” Coanil fundación. 2012. http://www.coanil.cl/centros.html.
87. See note 37 above.
88. See note 43 above.
89. See note 1 above.
90. See note 80 above.
91. “70% de los edificios públicos en chile son inaccesibles para discapacitados. Y qué hay
del metro?” Plataforma Urbana. January 23, 2006.
http://www.plataformaurbana.cl/archive/2006/01/23/70-de-los-edificios-publicos-en-todochile-son-inaccesibles-para-los-discapacitados-el-metro-aun-es-uno-de-ellos/.
92. Miguel A. Campos González. “Transantiago y Discapacitados: Nuestra mayor
discapacidad.” Fundación Nacional de Discapacitados. May 2007.
http://www.fnd.cl/reportajetransantiago.htm.
93. See note 73 above.
21
94. “Project Civic Access Fact Sheet.” Department of Justice. February 8, 2012.
http://www.ada.gov/civicfac.htm.
95. See note 1 above.
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