Ikponwosa Ero, the UN independent expert on the enjoyment of human rights by persons with albinism, first made an appearance in these pages two years ago in our coverage of the 2016 Global Appeal to End Stigma and Discrimination against Persons Affected by Leprosy launched from Tokyo. She had been one of six panelists in a session titled “Health and Human Rights—Combating Discrimination” discussing some of the challenges facing those with leprosy and other diseases, disabling conditions and health impairments.
She was back in Japan last month for the Tokyo Albinism Conference (see page 4), organized by Nippon Foundation Chairman Yohei Sasakawa, who in his capacity as WHO Goodwill Ambassador for Leprosy Elimination makes countering stigma and prejudice a core feature of his work. As Ms. Ikponwosa ran through the spectrum of discrimination that persons with albinism face, it was a timely reminder that beyond the need to address stigmas specific to albinism—or leprosy or any other disability—fostering an inclusive society in which everyone is treated with dignity and respect is key.
Two women with disabilities—Nidhi Goyal, an activist and comedian from India, and Mayaan Ziv, a fashion photographer and entrepreneur from Canada—addressed this issue recently on the BBC World Service radio series “The Conversation.” Both agreed that social attitudes were the No. 1 thing that needed changing, since social attitudes, or environments or “the way we design our worlds” are the actual disabling factor that limits a persons with disability from living they way they want to.
“We need to be comfortable with asserting a level of standards, of, quite frankly, human rights, that other people take for granted,” said Ziv. “If you live with a disability, then speaking up and having your voice heard in any opportunity is really important.”
For the non-disabled, Goyal had this advice about giving those with disabilities “a seat at the table.” She made the point that it’s also about recognizing that “you’re not giving anyone the space, you’re not creating a space for anyone, because the space belongs to all of us.” It is a message worth repeating.