先に結論 「『アルビノ』は、海外では差別的な呼称だから使わないほうがいいんじゃないですか？」と聞かれることが度々あります。 実際、英語圏の当事者コミュニティでは「albino」は蔑称として認識されており、1990年代以降は「person/people with albinism（PWA）」という表記が用いられています。 ですが、日本の当事者コミュニティには固有の歴史があり、カタカナ表記での「アルビノ」を当事者たちが主体的に選び取ってきた経緯があります。私たちは、そうした歴史の中で「アルビノ」というアイデンティティを獲得し、自ら「アルビノ」と名乗ることを選択してきた当事者個々人の自己決定が尊重されるべきだと考えています。 だから、日本アルビニズムネットワーク（JAN）としては、上記のような問い合わせに対しては、「日本で、個々の当事者が、自らの判断でカタカナ表記の『アルビノ』という呼称を使うのは問題ないし、それを悪いことだと責めるべきではない」と回答します。 以下では、そのように回答するのはなぜか、理由を説明します。
英語圏での呼称の変遷 まず、英語圏で「albino」ではなく「PWA」が推奨されるようになった経緯から説明します。なお、英語では、「albino」は「アルビノ」とは発音せず、カタカナ表記で近い発音は「アルバイノ」となります。 「albino」(注1)という言葉をめぐっては、アメリカの当事者団体であるNational Organization for Albinism and Hypopigmentation（NOAH）で何年もの間、広く議論されてきました。「PWA」という呼称は、アメリカ障害者法（1990年制定）と、アメリカで起こった本人中心主義的な運動の影響を受けています。 本人中心主義的な言葉は、コンディションよりも前に個人を置く（person-centered language is to put the individual ahead of the condition）ものであって、例えば「the disabled」が「people with disabilities」に言い替えられたのは、ある特定のコンディションはその人のアイデンティティの一側面にすぎず、1つの特徴によってその人の全体を定義するのはやめようという動きがあったからです（NOAH: 2008: 140-1）。 社会的に十分に浸透しているとは言えないけれど、以上のような理由から、英語圏の当事者コミュニティでは、蔑称である「albino」ではなく「PWA」が用いられるようになりました。
参考文献 チャールズ・ダヴェンポート（大日本文明協会訳）, 1914,『人種改良学』大日本文明協会. Froggatt, Peter, 1960, “The Legend of a White Native Race: A Contribution to the History of Albinism,” Medical History, 4(3): 228-35. 萩尾望都, 1980,『スター・レッド（1～3）』小学館. 木田文夫, 1954,「優生疾患と遺伝形式」『日本医科大学雑誌』41(5): 351-3. 駒井卓, 1942,『日本人を主とした人間の遺伝』創元社. 小松茂美編, 1987,『日本の絵巻7――餓鬼草紙・地獄草紙・病草紙・九相詩絵巻』中央公論社. エドムンド・レッセル（下平用彩訳）, 1899,『列氏皮膚病学（訂正再販）』吐鳳堂書店. Martin, Charles D., 2002, The White African American Body: A Cultural and Literary Exploration, New Brunswick, New Jersey: Rutgers University Press. 松本信一, 1941,『皮膚病学 前編（改訂増補第３版）』南江堂. NOAH, 2008, Raising a Child with Albinism: A Guide to the Early Years, East Hampstead: The National Organization for Albinism and Hypopigmentation. 田中茂穂, 1916,「イシガレイのアルビノ」『動物学雑誌』28(337): 477.
International Albinism Awareness Day ～Message from JAN～
Dear People with Albinism As JAN, we are very pleased to present this message on this year’s fifth Albinism Day. This year marks the 12th year since JAN was established. We are highly appreciated your warm support over the years which have made to be able to continue JAN’s activities, and looking forward to another year of Albinism Day. This year, in the wake of the spread of the novel coronavirus pandemic, JAN’s core activities “Albinism family meeting” where the people with Albinism and their families can get to know each other are facing the challenges to hold in the traditional face-to-face style. We are currently discussing alternative activities for the meeting, so that you can participate in them with confidence and safety. We are now planning new ways of working with you. We are looking forward to deepening and strengthen our relationship with you again this year.
Dear families with people with albinism. Albinism Day is still not well known in the public and it is not covered in the news and newspapers. However, this day is so important for the people with Albinism to consider that “Albinism is the one of our own individuality, not a personal matter but a social problem”. For families with children with Albinism, we would like you to talk about Albinism Day with not only in your daily lives but also the global perspective bellow. Albinism is not a personal problem that has to be solved by themselves, but a social issue to be solved by everyone in our society”. Due to the influence of the spread of the novel coronavirus, we feel that we are far away from each other in these days, “Albinism” has always the power of the word “family ties” to strengthen family bonds and create compassion and kindness in oura society. We believe that this is an opportunity to take a positive view and deepen family ties. We will contribute to the understanding and awareness of albinism and provide a safe and useful place and information for you to interact as an Albinism organization.
What’s International Albinism Awareness Day It has been reported globally people with albinism in some sub-Saharan African countries face severe stigma and discrimination such as albino attacks and killings which have several root causes including ignorance, longstanding stigma, poverty and most abhorrently, harmful practices emanating from manifestation of beliefs in witchcraft (UN:2019).These issue attached international attention. To correspond these human rights violation, albinism organizations in the world (Tanzania Albinism Society, Under the Same Sun, National Organization for Albinism and Hypopigmentation) worked together to reach out to not only the African government but also UN. Finally, On 18 December 2014, the General Assembly adopted resolution A/RES/69/170 proclaiming, with effect from 2015, 13 June as International Albinism Awareness Day.
History of international albinism awareness raising activities Moreover, in response to the call from civil society organizations advocating to consider persons with albinism as a specific group with particular needs that require special attention, on 26 March 2015, the Council created the mandate of Independent Expert on the enjoyment of human rights by persons with albinism. As a result Ms. Ikponwosa Ero who are also with person with albinism was designated as a United Nations Independent Expert in the UN Human Rights Council. She researched the issues of albinism in African region and submitted her first report on albinism to the UN in 2016. Based on the research, Regional Action Plan on Albinism in Africa (2017-2021) had been endorsed in 2017 and have been reaching out to the governments in Sub Saharan Africa. Here in Japan, with the cooperation of the Nippon Foundation and Ms. Ikponwosa Ero, Tokyo albinism conference was held by in 2018. There were many participants who were person with albinism from all over the Africa and raised an awareness challenges of people with albinism and Africa to Japan and it is widely reported. Afterwards, the global albinism research was launched by UN to investigate the current situation of people with albinism in regions outside Africa JAN is cooperating it as a representative of Japanese albinism organization. It is expected that this research will further advance and raise awareness in the international community.
Tokyo Albinism Conference (2018.11.9)
In 2020, Under the Same Sun, NOAH and French albinism group Genespoir, held an international conference in Paris for people with Albinism and representatives of the albinism organizations participated there from all over the world. In this conference, it was voted to establish an international organization called Global Albinism Alliance in 2023. In addition the roadmap for formulating the organization was adopted and the management members and representatives of each region and country were elected. (JAN is also planning to act as a contact point for the Southeast Asia region.
Global Albinism Alliance (Exploratory Meeting)
Thus, after the establishment of the International Albinism Awareness Day, Albinism organizations which had been mainly working within the country and region, have become more active and widely in their activities to appeal the social issues faced by albinism to the international community through international cooperation and collaborations than ever before.
JAN’s Vision and Policy JAN was founded in 2008, triggered by the “Albino Seminar” held mainly by people with albinism and their families. To enlightenment activities to the society, we have been having meetings for networking among people with albinism and their families, WEB management, research (Sociology, Education, psychology and so on), media interview, living library, and working shop for dermatology, ophthalmology, cosmetics and special care for students so far. Through above working, we are giving them opportunities to learn about law and existing public services, ICT tools, skin care products, latest medical treatment as a care support. In addition, since 2010, we have held “Albinism Meeting” at a frequency of 3 to 4 times a year, providing an opportunity for people with albinism and their families to interact. In 2019, we held the meeting for three times with a total of 47 participants. We are now planning to continue our activities in 2020, including online social gatherings for everyone to feel comfortable participating in even as the coronavirus spreads. The Tokyo Albinism Conference (2018) was an opportunity for JAN’s management members to attend international conferences in other countries. The exchange of information with overseas groups of people with albinism has made JAN become more active. We will continue our activities to raise the awareness in the Japanese society about albinism and to provide peer support for people with albinism and their families as well as a broader view of the issues facing people with Albinism around the world.
