Jason Mack
Counselor
U.S. Mission to the United Nations
New York City
October 22, 2019
AS DELIVERED
Thank you Independent Expert Ero for your report and for your work to promote the human rights of persons with albinism on an equal basis with others, as well as working to combat the stigma, violence, and discrimination against persons with albinism that is, unfortunately, all too pervasive. In the United States, protections for persons with albinism are found under the Americans with Disabilities Act (ADA), an important federal civil rights law covering all U.S. persons with disabilities and prohibiting discrimination based on disability. While the ADA does not include a list of medical conditions that constitute disabilities, it does includes a definition of disability that can encompass persons with albinism. This is because albinism-related impairments, for example involving pigmentation and vision, may “substantially limit [the performance of] major life activities.”
In the United States, the ADA opens the doors for full participation by all in all aspects of everyday life, including accessibility in and to buildings, transportation, and telecommunications systems, as well as access to information and communications technologies, employment, health care, education, and services provided by state and local government.
Independent Expert Ero, your report recommends collecting data on persons with albinism disaggregated by sex, age, health, and residence in rural or urban areas, including through national censuses. Albinism is but one condition that could result in someone being an individual with a disability. Given the challenges inherent in broad data collection efforts focused on specific types of disabilities, how many countries officially recognize albinism as a disability, and how many countries currently collect data specific to persons with albinism in national censuses or similar instruments?
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