Tuesday, September 30, 2008

Timeline 1981-present

1981: International Year of Disabled Persons. Disabled Peoples' International founded and granted Special Consultative Status by UN.

1983-1992: International Decade of Disabled Persons

1987: Global Meeting of Experts to review the Implementation of the World Programme of Action concerning Disabled Persons recommends drafting of an international convention on the elimination of all forms of discrimination against persons with disabilities by conference of UN General Assembly. Draft agreements were prepared but rejected due to disinterest and treaty fatigue (White Paper, 68).

1990: United States passes Americans with Disabilities Act and President George H.W. Bush signs into law.
1993: Disabled persons part and parcel of modern HR int’l law (Vienna Declaration of the 1993 World Conference on Human Rights), stated in White Paper (p. 53).

1993: Mental Disability Rights International established. Since then, they have “advised US and international agencies, including the U.S. Department of State, UNICEF, the World Health Organization, the UN Special Rapporteur on Disability, and the U.S. National Council on Disability” and “advocated for the creation and resolution of the United Nations Convention on the Rights of Persons with Disabilities.” On current board of advisors is Reed Brody of Human Rights Watch (HRW).

1995: DPI Women’s Programme “initiated a campaign to voice their concerns regarding the increasing use of eugenic health policies and practices, such as forced abortion and sterilization, as a part of their participation in the Beijing process” (White Paper, p. 43)

1999: Hong Kong’s Interregional Seminar on International Standards on Disability doctrine “supports the use of a fully participatory approach to developing a comprehensive treaty on the human rights of people with disabilities 10.” (White Paper, p. 52) In other words, disability groups should be involved.

1999
: ACLU position paper on Disability Rights.

2002: Disability rights advocacy community is inexperienced and is not applying appropriate pressure to keep issue on agenda. Fewer than five people staff UN Program on Disability office, which is less than half than at the height of the Int’l Decade of Disabled Persons. Also, office is in New York, thousands of miles from UN HR center in Geneva. Disability rights is relegated to social development sphere, as opposed to HR sphere. (White Paper, p. 54, 56)

2002: Disabled Peoples’ International Sapporo Declaration demands “a specific international human rights convention that is reflective of the full range of civil, political, economic, social and cultural rights and that includes a strong convention-monitoring mechanism informed by the unique perspective of people with disabilities to ensure the credibility, legitimacy and efficacy of the convention; Disabled people demand a voice of our own in the development of this instrument. We must be consulted at all levels on all matters that concern us” (p. 7-8).

January 2004: Original draft convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, proposed language for Articles 1-25.

May-June 2004
: A series of suggestions from member states for convention, including proposed article 15bis on women.

August-September 2004
: Summary of member states’ basic agreement on Convention Articles 4-7(4).

January-February 2005: Summary of member states’ basic agreement on Articles 7(5)-14(bis).

2005: World Institute on Disability (WID) publishes Change from Within: International Overview of the Impact of Disabled Politicians and Disability Policy Bodies on Governance as part of IDEAS for a New Millenium project. Although Board of Directors is populated with disabled persons, none are from “gatekeeper” organizations.

December 2006: UN General Assembly adopts Convention on the Rights of Persons with Disabilities and its Optional Protocol.

2007: In the United States, the New Freedom Initiative for “improving educational and employment opportunities, increasing access to assistive technologies, expanding transportation options, and promoting homeownership and integration into daily community life” is passed.

March 2007
: Convention on the Rights of Persons with Disabilities and its Optional Protocol opened for signature.

May 12, 2008
: Entry into force, 30 days after 20th ratification of Convention and its Optional Protocol.

September 25, 2008: President Bush signs S. 3406, the “ADA Amendments Act of 2008” into law. It “clarifies and broadens the definition of disability and expands the population eligible for protections under the Americans with Disabilities act of 1990.”

December 3, 2008: International Day of Persons with Disabilities. Theme is “Convention on the Rights of Persons with Disabilities: Dignity and justice for all of us.”

Monday, September 29, 2008

Ambiguous Gatekeepers and a Potential Entrepreneur

Representing more than 600 million people worldwide and composed of eight large member organizations including (DPI) and Rehabilitation International (RI), the International Disability Alliance (IDA) is the foremost representative of disabled persons worldwide. Although I suspect IDA is the political entrepreneur most responsible for positioning disability rights on the global stage, they could also be seen as the gatekeeper. I was unable to determine the precise role of IDA because their website is currently under construction and limited information is available. In light of this, a discussion of DPI as a political entrepreneur follows.

The same year (2002) the U.S. National Council on Disability came out with a White Paper describing several factors within the disability rights and international human rights communities that led to a decline in salience and visibility of disability rights as a global issue, DPI convened its 6th World Assembly in Sapporo, Japan and produced the Sapporo Declaration.

Where the White Paper uses literature and precedent to support the need for equal rights (p. 53), a compliance mechanism (p. 55), and sees treaty adoption as securing a place for disability rights in the major human rights organizations (p. 61), the Sapporo Declaration demands
"a specific international human rights convention that is reflective on the full range of civil, political, economic, social and cultural rights and that includes a strong convention-monitoring mechanism informed by the unique perspective of people with disabilities to ensure credibility, legitimacy and efficacy of the convention; Disabled people demand a voice of our own in the development of this instrument. We must be consulted at all levels on all matters that concern us" (p. 7).
The White Paper provides a rationale for treaty adoption by stating "the advantage of a treaty setting forth obligations on the rights of people with disabilities is that it will establish concrete obligations for government conduct thatwhich specifically address disability" (p. 62). The Sapporo Declaration simply urges "all UN member states to support the formulation and adoption of this convention" (p. 8). Both the clarity and strength of language in the Sapporo Declaration is indicative of political entrepreneurship. DPI has identified a lack of equal rights for disabled people as a problem and provided a solution to the problem. Next, DPI has to "shop around" to prick the interest of a gatekeeper.

The most obvious gatekeeper is IDA. Not only do they represent eight major disability organzations worldwide, but they have connections to the UN and other, larger gatekeepers. They aim to be a "spokesperson for the international disability movement in global policy matters" and facilitate "co-operation and exchanges of information among international disability organisations." Their first goal is "To identify common positions on disability issues and to lobby UN agencies together on those to which there is agreement." Certainly a convention on the rights of disabled persons fits this criteria.

However, other organizations must be considered. DPI maintains official relations with UNESCO and the World Bank. In fact, the World Bank Group's advisor on Disability and Development (2001-present), Judy Heumann, is one of the co-founders (1983) and was a co-director (1983-1994) of the World Institute on Disability, an "internationally recognized public policy center by and for people with disabilities." Furthermore, the same year the White Paper was published and the Sapporo Declaration was created, a disability and development conference at the World Bank fostered the Global Partnership on Disability and Development (GPDD). At an International Conference on Disability and Development in 2004, Heumann describes GPDD as "a good example of an informal coalition, including the Bank and more than one hundred other organizations" and states their goal is to "build and disseminate good practices in order to help countries achieve the goals of access, inclusion, and poverty reduction of people with disabilities."

Given these relationships, it is possible the gatekeeper who adopted the issue is the World Bank or perhaps a combination of IDA, the World Bank, and UNESCO. I was not able to find specific evidence of DPI "pitching" their issue, so I have constructed a possible "adoption" situation given links between organization's webpages and Judy Heumann.

Finally, the disability rights community can be fractious. The White Paper identifies one of the risks in the treaty process as the "relative degree of consensus within the broad disability community as to the key elements of a coherent and focused international campaign" (p. 68). As the definition of disability broadens, the possibility of disagreement between and among sub-populations increases.

To conclude, the political entrepreneur in the disability rights movement is a well-organized, popular international disability organization (DPI/IDA) who most likely pitched its issue to a larger international disability organization (IDA/none) and/or the World Bank or UNESCO, who adopted the issue, resulting in proliferation on the world stage. Increasing momentum from 2002 to mid-2007 resulted in the UN's adoption of the Convention on the Rights of Persons with Disabilities and its Optional Protocol and its entry into force.


Note: All websites were accessed September 29, 2008.

Wednesday, September 24, 2008

Helen Keller, Marlee Matlin, and Celebrity Advocacy

Celebrity activism in disability rights is unique from other issues taken up by celebrities in that many celebrity activists are themselves disabled. This is true for Helen Keller, who was perhaps the first celebrity activist for disability rights. The UK’s Royal National Institute for Blind People (RNIB) describes her path to stardom and advocacy. She originally became famous for her phenomenal learning ability and later used her learning experiences to conduct popular lecture tours and vaudeville acts. In 1918, Helen began using her home in Forest Hills, New York as a base for her
extensive fundraising tours for the American Foundation for the Blind. She not only collected money, but also campaigned tirelessly to alleviate the living and working conditions of blind people, who at that time were usually badly educated and living in asylums. Her endeavours were a major factor in changing these conditions.
After World War II, her fundraising efforts continued with the American Federation for the Overseas Blind.

If you have seen What the Bleep?!: Down the Rabbit Hole (2006 film more commonly known as What the Bleep Do You Know?), watched any of several episodes of West Wing, or the 2008 season of Dancing with the Stars, you will recognize Marlee Matlin. Of the many celebrities involved in disability rights, Marlee is one of the most influential because she has worked directly with policymakers. In the late 1980’s, Matlin worked closely with Senator Tom Harkin (D-IA) on what became the 1990 TV Decoder Circuitry Act. She was "instrumental in establishing congressional legislation that all televisions manufactured in the US be equipped with Closed Caption technology. In 2003, she “continued her advocacy for assistive technologies” for the deaf and hard of hearing, and Sprint’s Video Relay Service in particular, with Senator Harkin at an event
to discuss the positive impact of technology on people with disabilities. The two [Harkin & Matlin] joined event sponsors Easter Seals and Microsoft Corp., as well as national disability leaders, government representatives and assistive technology (AT) vendors to celebrate the innovations in technology that are improving the quality of life for people with disabilities and to refocus attention on the fact that much more remains to be done.
A lesser known actor who is also deaf, Russell Harvard (adult son of Daniel Day Lewis in 2007’s There Will Be Blood) recently testified about Broadband Access for the Disabled front of the House Energy and Commerce Subcommittee on Telecommunications and the Internet. He spoke "on behalf of the Coalition of Organizations for Accessible Technology (COAT), a coalition of nearly 200 national, regional, and communitybased organizations." His testimony provides an excellent example of an organization using a celebrity member to increase the salience of its issue. In his testimony, he encourages Congress to make video programming technology "equally accessible" and addresses "the various provisions in this proposal that concern access to video programming by people who are deaf or hard of hearing."

In addition to Michael J. Fox and Muhammad Ali, who both have Parkinson’s disease, Christopher Reeve is perhaps the most well-known contemporary activist for disability rights. Reeve, however, has received criticism for his activism and its negative effects on the disability rights movement. In their article Fame and Disability: Christopher Reeve, Crips, and Infamous Celebrity (2004), Goggin and Newell say of Reeve's activism:
“[It] has been far more strongly focussed on finding a cure for people with spinal injuries - rather than seeking to redress inequality and discrimination of all people with disabilities…Many feel, like Mitchell, that Reeve’s focus on a cure ignores the unmet needs of people with disabilities for daily access to support services and for the ending of their brutal, dehumanising, daily experience as other (Goggin & Newell, Disability in Australia).”
Based on the research I found, it appears the primary role of celebrity disability activists does not consist of direct involvement with policymakers, although those discussed above are exceptions. Many celebrity activists make TV appearances, but the result seems most often to be raising awareness. The British comedian Stephen Fry was diagnosed with bipolar disorder in 1995 and has since become an activist and author on the subject. Linda Bove, longtime Sesame Street librarian who is deaf, is well-known for introducing "millions of children to sign language and issues involving the deaf community." Diane Rehm of National Public Radio and Robert F. Kennedy Jr. are Honorary Directors of the National Spasmodic Dysphonia Association (NSDA). Both have the condition, making their voices sound weak or as if they have a cold.

Celebrities promoting disability rights who are not disabled include Paul McCartney, Sandra Day O’Connor, Jim Carrey, and Jenny McCarthy. Carrey and McCarthy are part of the Green Our Vaccines movement which seeks to remove toxic chemicals from vaccines, particularly those intended for children.

O’Connor retired in 2006 to care for her husband, who is ill with Alzheimer’s. On May 14, 2008, she testified before the Senate Special Committee on Aging “urging the need for more research and funding for the disease” and speaking “about the reluctance and fear many families dealing with Alzheimer's face. She said her own sons do not want to be tested for fear of insurance issues and the dire prognosis that currently faces those afflicted with the disease.”

Paul McCartney became an avid supporter of Paralympics GB after meeting Sophie Christianson, one of Great Britain’s gold medal Paralympic athletes. The charity’s first TV ad features “Live and Let Die” "accompanying footage of performances by elite athletes with disabilities."

In summary, although it is not as prominent as other global issues taken up by celebrities, disability rights still receives its fair share of celebrity support. Marlee Matlin has had the most impact of any celebrity I found. Over several years, her assistance to Senator Harkin was essential to the construction of what became the 1990 TV Decoder Circuitry Act. The remaining celebrities have participated occasionally in legislative processes and Michael J. Fox's activism indicates he may reach an impact level similar to that of Marlee Matlin. Christopher Reeve is the only celebrity activist I found that was said to negatively impact the disability rights movement. Finally, I was not able to find any significant celebrity activism leading up to the UN’s Convention on the Rights of Disabled Persons and Optional Protocol entry into force in 1975. This indicates celebrity activists did not play a major role in getting disability rights on the global agenda.

It must be noted, I have recently found significant evidence of non-celebrity activists successfully grafting the disability rights movement onto the U.S. civil rights movement in the 1960’s and 1970’s. It appears this played a critical role in making disability rights a national issue.


Note: All websites were accessed 9/20 - 9/22/2008.

Sunday, September 14, 2008

Salience of Disability Rights on the Global Agenda

Originally conceived as a vague human rights concern pertinent to employment issues and affecting a minority of the population, disability is now mentioned in myriad agendas and officially defined as the "outcome of the interaction between a person with an impairment and the environmental and attitudinal barriers he/she may face." Moreover, agencies such as the World Health Organization (WHO) state "every human being can experience a decrement in health and thereby experience some degree of disability". Together, these changes have increased the salience of disability rights on the global agenda, though not to the level of such high-salience issues as HIV/AIDS, universal education, or environmental sustainability.

Prior to 1975, disability rights were a low-salience, barely global issue characterized by weak and inactive language. In 1953, the ninth session of the UN Social Commission merely
"expressed interest in programmes designed for the promotion of services for persons with disabilities which stress their independent and productive role in society."
Since 1975, the story of disability rights as a global issue has been one of momentum and inertia. With the adoption of the Declaration on the Rights of Disabled Persons, disability rights gained an identity as an independent issue of global importance. The Declaration states all disabled persons
shall enjoy all the rights set forth in this Declaration...the inherent right to respect for their human dignity...the same civil and political rights as other human beings...the right to medical, psychological and functional treatment...
and more. Furthermore, at its twenty-fourth session the Commission for Social Development recommended the elimination of physical and architectural barriers that prevent the full social integration of persons with disabilities. Not long after, 1981 was established as the International Year for Disabled Persons and 1983-1992 the International Decade of Disabled Persons.

Around this time, Disabled Peoples' International (DPI), the foremost of disability rights NGO's, was also founded. Constructed as a coalition of national assemblies organized by region, DPI affects disability rights agendas worldwide. The Seoul Declaration was released last year in support of the UN's Convention on the Rights of Persons with Disabilities and Optional Protocol, demonstrating DPI is a visible force impacting the permanence and evolution of disability rights on the global agenda.

Paramount in the evolution of disability rights as a salient global issue were the participation of NGO's such as DPI and the increasing adoption of disability rights in multiple agendas. As evidence of this, DPI's website contains links to over two dozen topic areas including international development, health, and job opportunities. These, in turn, are reflected by such international organizations as the World Bank (development), the WHO (health), and the International Labour Organization (job opportunities).

Despite the apparently strong connections between NGO's and eminent international organizations, disability rights lack the salience of such global issues as HIV/AIDS, universal education, and environmental sustainability, all of which are mentioned in the United Nation's Millenium Development Goals. That is not to say disability rights are not found in these high-salience agendas. Disabled persons suffer higher rates of sexual abuse and are more likely to engage in harmful sexual practices, both of which contribute to higher rates of HIV/AIDS. Education is often withheld from those with disabilities, so programs addressing universal education must necessarily address the issue of educating disabled persons. Finally, lack of development and poverty often lead to or exacerbate conditions of disability, making any program in environmental sustainability and development pertinent to those living with disabilities.

Unfortunately, the Campaign for Innocent Victims in Conflict (CIVIC) is a less salient global issue than disability rights. Perhaps the fairly strong coupling of disability rights to universal education and sustainable development is one reason for its increased salience when compared to the protection of civilians in armed conflict. Also possible is the longevity of disability rights on the UN's agenda. Disability has been specifically mentioned since the Universal Declaration of Human Rights, albeit in passing.

Whatever the reasons for the disparate salience of disability rights and protection of victims in armed conflict, CIVIC can surely benefit from the history of disability rights by identifying a precedent or precedents within the UN agenda, effectively connecting their issue with high-salience issues, constructing a global network with regional specificity, and pressing for ever more inclusive definitions of innocent victims in armed conflict. Indeed, they have already taken steps in these directions.







Sunday, September 7, 2008

Disability Rights on the Global Agenda

On May 3, 2008, the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and Optional Protocol became "one of only seven international human rights treaties to enter into force in the 60 years since the Universal Declaration of Human Rights" (1). The legally binding treaty builds upon earlier, non-legally binding international reports (2, 3) and highlights human rights issues of particular concern to the disabled including increased incidence of poverty, reduced access to health care, education, and employment, increased rates of harassment, exploitation, and violence, especially among women and girls, and lack of autonomy and independence. It also emphasizes "the importance of mainstreaming disability issues as an integral part of relevant strategies of sustainable development" (4).

In order to address these issues, the population in question must be identified and counted. What is the definition of disability? And how many people are disabled? The latter is difficult to answer because the CRPD avoids explicitly defining disability, instead preferring to call it "an evolving concept [that] results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders full and effective participation in society on an equal basis with others" (4). This builds upon the work of the aforementioned international programmes and reflects the redefining of human ability occurring within academia (5).

Nevertheless, there are estimates on the number of disabled persons in the world. From over 500 million disabled in 1982 (2), there are now in excess of 650 million persons living with disabilities, or about 10% of the world's population (6). Approximately 300 million of these are women (7) and approximately 80% of all disabled persons live in developing countries (6). In isolated, rural areas of some developing countries, up to 20% of people were disabled in 1982. When effects on the family were included, the percentage jumped to 50% of people affected by disability (2).

Given these percentages, the framing of disability rights as a development issue becomes apparent. In addition to the fundamental need for development aid in affected communities, the development aspect of disability rights may act to increase its salience by providing an alternate venue of appeal. While cases of physical and sexual abuse are compatible with the issue characteristic of "involving bodily harm to vulnerable individuals" (8), other forms of discrimination such as lack of autonomy and reduced access to education do not. Nor do they, to the best of the author's knowledge, generally satisfy the other major issue characteristic of "legal equality of opportunity" (emphasis added) (8). However, with the inclusion of development rights in the campaign, another venue of persuasion becomes available to the advocate. For those actors less persuaded by the human rights violations, the solid statistics on disabled persons and developing countries act to increase both the salience and viability of disability rights as a global issue.

Is it possible the tying of disability rights to development as well as human rights was essential for its successful ascension to the global agenda? To answer this question, I will investigate how disability rights were framed in early efforts to gain access to the global agenda and how the framing changed throughout the campaign.

I will also explore the relationship between disability rights and issues not explicitly mentioned in the CRPD's Preamble: fatal and highly communicable diseases, particularly those associated with sexual transmission such as HIV/AIDS, the right to bear and keep children, and freedom of sexual expression.

References

1. AIDS and Rights: The XVII International AIDS Conference in Mexico City. (2008). Retrieved 9/5/2008, from http://hrw.org/english/docs/2008/08/05/mexico19544_txt.htm

2. World programme of action on disabled persons (1982). Retrieved 9/5/2008, from http://www.un.org/disabilities/default.asp?id=23

3. Standard rules on the equalization of opportunities for persons with disabilities (1993). Retrieved 9/5/2008, from http://www.un.org/esa/socdev/enable/dissre00.htm

4. Convention on the rights of persons with disabilities and option protocol. Retrieved 9/5/2008, from http://www.un.org/disabilities/documents/convention/convoptprot-e.pdf

5. Baker, D. L. (2006). Children's disability policy in a global world: A question of convergence. International Journal of Public Administration, 29, 397.

6. United Nation Secretariat. (2008). Convention on the rights of persons with disabilities and its protocol. Retrieved 9/5/2008, from www.un.org/disabilities/documents/ppt/crpdbasics.ppt

7. Women and girls with disabilities. (2006). Retrieved 9/5/2008, from http://hrw.org/women/disabled.html

8. Keck, M.E., & Sikkink, K. (1998). Activists beyond borders : Advocacy networks in international politics. p. 27. Ithaca, N.Y.: Cornell University Press.