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.