Persons with Albinism worldwide stand in solidarity with counterparts in Africa, celebrate global albinism day
Tokyo, Japan– June 10, 2019: Speaking ahead of International Albinism Awareness Day on Thursday, 13 June, a group of American, European, Japanese and Australian Organizations serving persons with albinism worldwide* speak in defense of their brothers and sisters still under attack in parts of Africa; but also hail the strides that have been made.
Today, we acknowledge the epic strides that have been made in de-mystifying albinism in the public forum globally. While there remains more to be done, we see the difference and many of us are benefiting from the great awareness being raised. The media too has played an important role in this progress. So have several champions within our community – too numerous to mention. We salute all our heroes – known or unknown, sung or unsung, with albinism and without.
Also on this day, we denounce ongoing attacks targeting persons with albinism in certain countries in Sub-Saharan Africa. While these atrocities seem far and inconceivable for most of us, we nonetheless are aware that one slight change in location would have changed our destiny. We strongly urge all concerned governments and all relevant international bodies such as the United Nations to continue to strive to prevent these horrific and abhorrent forms of violence.
There are also too many people with albinism worldwide who die early to skin cancer – a preventable condition. We urge governments to improve access to education and the highest attainable standard of health. The recognition of sunscreen as an essential medicine to be provided to persons with albinism, at little or no cost, would reduce the incidence of skin cancers and increase the productivity of those with albinism. We also urge relentless efforts to end all forms and levels of discrimination, from bullying in the classroom to discrimination in accessing community life and employment.
Finally, we celebrate the global theme of this day: still standing strong. A motto to recognize, celebrate and encourage strength in persons with albinism. Despite all the past and on-going challenges, we have reason for hope; reasons to still stand strong. We know that our world is bound to become a better place for all persons with albinism, uniformly, across the globe, regardless of disability, colouring and geographic location. We have a dream that one day, people with albinism will take their rightful place, in every level of society and that the days of discrimination will become a faint memory. We dedicate ourselves afresh to that dream coming true today.
*ORGANIZATIONS (In alphabetical order)
Australia: Albinism Fellowship of Australia
Canada: Under the Same Sun
Denmark: DFFA – Dansk Forening For Albinisme
Europe: Albinism Europe
Finland: Suomen albinismiyhdistys ry
Germany: NOAH Albinismus Selbsthilfegruppe e.V
Japan: Japanese Albinism Network
Netherlands: Oogvereniging Albinisme
Norway: NFFA – Norsk Forening For Albinisme
Turkey: Albinizm Derneği
UK & Ireland: The Albinism Fellowship
United States: NOAH – National Organization of Albinism and Hypopigmentation
International Albinism Awareness Day ～Message from JAN～
Since 2006, it has been reported globally people with albinism in some sub-Saharan African countries face severe stigma and discriminations such as albino attacks and killings which have several roots 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 and it is needed to take actions. To correspond these human rights violations, 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.
Moreover, in response to the call from civil society organizations advocating to consider people with albinism as a specific group with particular needs that require special attention, on 26 March 2015, the UN Human Rights Council created the mandate of Independent Expert on the enjoyment of human rights by persons with albinism. As a result Ms. Ikponwosa Ero who were 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, Tokyo albinism conference was held by in 2018 with the cooperation of the Nippon Foundation and Ms. Ikponwosa Ero. There were many participants who were people 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.
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 “Albino Square” at a frequency of 3 to 4 times a year, providing an opportunity for people with albinism and their families to interact.
Since Tokyo Albinism Conference 2018, JAN’s cooperation have been developing wider and wider. From now on, while continuing the previous activities of understanding and enlightenment of Japanese society and peer support to the people with albinism and their families, we will work from an international perspective to solve the problems people with albinism face.