International Albinism Awareness Day: ‘Still Standing Strong’
International Albinism Awareness Day: ‘Still Standing Strong’
Highlights:

  • International
    Albinism Awareness Day (IAAD) is celebrated on 13th June every
    year
  • It
    aims to generate awareness about the health and social challenges faced by
    people with albinism
  • Greater
    public awareness will ensure equal rights so that they can live with
    dignity, without fear of discrimination, prejudice, and persecution

International
Albinism Awareness Day (IAAD) is celebrated on 13th June every year.
It provides a unique opportunity to celebrate the talents and achievements of
people with albinism and to join the struggle against the challenges they face.


Every year a theme
is chosen that sets the tone for the IAAD celebrations. The 2019 Theme is ‘Still Standing Strong,’ which encourages people across the globe to
recognize, celebrate and show solidarity to persons living with albinism and
to support their cause. The theme highlights the fact that despite the numerous
challenges faced by people with albinism, they are “Still
Standing Strong”!

History of International Albinism Awareness
Day

The International
Albinism Awareness Day was established by the United Nations (UN). On 18th December 2014, the
UN General Assembly adopted a resolution that proclaimed 13th June as
International Albinism Awareness Day. This historic resolution brought albinism
on the global stage. As a result, the first International Albinism Awareness
Day was celebrated on 13th June 2015. Since then, the annual celebrations have
progressively gathered momentum and have gone from strength-to-strength,
reaching more and more people with each passing year. The 5th edition of the
celebrations is taking place on Thursday 13th June 2019.

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How is International Albinism Awareness Day
Celebrated?

International
Albinism Awareness Day is celebrated across the globe through numerous events
and activities, some of which are briefly highlighted below:

  • United Nation’s Event: This is a
    major event that will take place on 13th June 2019 at the UN
    Headquarters in New York, USA.
  • Social Media Campaigns: Social
    media is a very powerful tool in the 21st century and is
    especially popular among the new generation. In order to show solidarity
    for people living with albinism, the UN recommends using the following
    hashtags:#stillstrong #iaad #iaad2019 #AlbinismDay
    #standupforhumanrights.
  • Real Life Stories: Real-life
    stories are very important since they put a ‘human face’ to albinism that
    people can relate to.
  • IAAD Ambassadors: The role of ambassadors
    is instrumental for spreading awareness about albinism and bringing the
    global health community’s attention to the challenges faced by people
    living with albinism
  • Films & Documentaries: These
    are very powerful ways of communicating the message about the predicaments
    of people with albinism to the global community. For example, the
    documentary “In the Shadow of the
    Sun”
    directed by Harry Freeland is an excellent example. This
    documentary, released in 2012, follows the dreams of two people with albinism
    in the face of great adversities, including prejudice and persecution
  • Fundraising Events: There’s a wide
    variety of events and activities that can be organized to raise funds for
    people with albinism.
  • Concerts & Musical Events: Concerts,
    dance, and other musical performances are organized in many countries on
    the occasion of International Albinism Awareness Day.
  • Photo Exhibitions: Exhibitions of
    photographs depicting the ground realities of people living with albinism
    and the atrocities committed on them will raise awareness and help to
    convince decision-makers and policymakers to bring about positive policy
    changes through albino-friendly legislations
  • TV & Radio Shows: Airing
    programs on TV and radio, focusing on the theme of albinism are very effective
    ways of communicating the message to the public.
  • Marches & Walks: Marches and
    walks are organized in many parts of the world on the occasion of
    International Albinism Awareness Day. For example, a celebratory march is
    being organized this year in the city of Manzini in Swaziland (Eswatini)
    in southern Africa to mark the occasion
  • Health Fairs: These are very
    effective for raising awareness about albinism and at the same time, very
    entertaining for the people.

Albinism: Facts & Figures

  • The
    term ‘albinism’ dates back to the early 19th century and is
    originally derived from the Latin word ‘albus’ (‘white’)
  • 1 in
    20,000 people in North America and Europe have albinism
  • 1 in
    5,000 is the average prevalence of albinism in Africa
  • 100,000
    to 200,000 cases of albinism have been reported from India
  • In
    2018, six albino women survivors of attacks and mutilation climbed Mount
    Kilimanjaro to raise awareness about the rights of people with albinism
  • People
    with albinism are often stigmatized, face discrimination, and exposed to
    violence
  • There
    is no cure for albinism

Albinism: Myths & Truths

Myths

Truths

Albinism is contagious

Albinism is a genetic disorder and can’t be transmitted from person-to-person and hence, not contagious

Albinism is a curse or punishment due to bad deeds in the past

The cause of albinism is well established scientifically. It has nothing to do with curses or punishments for past wrongdoings

People with albinism are less intelligent

Albinism occurs due to the absence of the pigment melanin in the skin, hair and eyes. Absence of melanin in the eyes can impair vision, leading to difficulty in reading, but doesn’t affect intelligence

Albinism only affects the appearance of the person

Although appearance is affected due to the absence of melanin in the skin, it also affects vision due to the same reason. Hence, it doesn’t just affect the appearance

People with albinism can’t go outside in the daytime

People with albinism can go outside during the day, provided they have adequate sun-protection

Social Challenges of People with Albinism

Albinism is widely
misunderstood by society. Throughout the world, people with albinism,
especially children, face bullying, mockery, prejudice, abuse, and even
violence because of stereotypes based on the color of their skin. This may
force them to drop out of school. The problem is compounded by widespread
social rejection and marginalization, which can result in unemployment,
isolation, and life-long poverty.

‘International Albinism Awareness Day (IAAD) is celebrated on 13th June every year. It aims to raise awareness about the challenges faced by people with albinism and advocate for equal rights so that they can live without discrimination, prejudice, and persecution.’
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Moreover, violence
against albinos is another major social issue. Over 700 attacks and killings of
people with albinism have been reported from 28 countries in Sub-Saharan Africa
since 2010. Violence against people living with albinism often arises from
ignorance, ingrained stigma, poverty, and false belief in witchcraft practices.

Interestingly, in
some parts of Sub-Saharan Africa, people with albinism are considered to be
ghost spirits or phantoms, called“zeru zeru” in the Swahili
language. In India, there have been reports of albino babies being abandoned as
they are considered to be inauspicious.

How Can the Plight of People with Albinism be
Improved?

The plight of
people living with albinism can only be improved through concerted efforts at
the global level. The International Albinism Awareness Day provides an ideal
opportunity to raise the topic of albinism on the global health agenda.

Some of the ways of
improving the lives of people with albinism are briefly highlighted below:

  • Education: Quality education with
    life-skills should be provided so that people with albinism have better
    employment opportunities to live with dignity. Moreover, stepping-up
    education will help to counteract ignorance about albinism and create
    awareness about the condition
  • Advocacy: Advocacy efforts are
    very effective in giving an international voice to the concerns of people
    with albinism and contributing to the protection of their human rights
  • Healthcare: People with albinism
    frequently cannot access adequate healthcare services due to
    discrimination and other factors. This underscores the importance of
    access and equity, so that everyone can have access to quality healthcare,
    irrespective of caste, creed, physical appearance (as in albinism),
    educational attainments, and social standing
  • Networking: Establishing effective
    networks, groups, and associations will facilitate the promotion of the
    rights of people with albinism and help those in need of protection
    against violence
  • Legislations: Passing laws and
    regulations are effective ways of fighting corruption. Good legislation
    will help to ensure the protection of people with albinism against
    marginalization, discrimination, abduction, mutilation, and killing
  • Law Implementation: Adequate
    training and support should be provided to prosecutors, magistrates, and
    judges so that they can provide justice and legal protection for albino
    victims. It should also be ensured that the police are responsive to
    threats on people with albinism
  • Empowerment: People with albinism
    should be given opportunities to occupy key public positions with decision
    making powers. This will help reduce stigma and promote visibility and
    inclusion of people with albinism in the society  
  • Stigma & Discrimination:
    People with albinism face severe stigma and discrimination in many parts
    of the globe, especially in Africa. Therefore, there is a need to fight
    stigmatization and discrimination to ensure that the victims have access
    to justice, care, and redressal
  • Myths & Superstitions: There
    is an urgent need to rectify myths and misconceptions about albinism, as well
    as combat harmful superstitions and beliefs about the condition, which are
    often associated with witchcraft. These are primarily prevalent in African
    countries

As
per the 2030 Sustainable Development Goals,
no one should be left behind, including people
with albinism, who deserve to live with dignity like any other human being.
This can be ensured by providing them equal opportunities in education,
employment, justice, and healthcare.

So, on
International Albinism Awareness Day, let’s make extra efforts to fight for the
rights of people with albinism, so that they can live free from discrimination,
deprivation, prejudice, and fear.

References :

  1. International Albinism Awareness Day 13 June – The United Nations – (https://www.un.org/en/events/albinismday/index.shtml)
  2. Meet the Champions of the Albinism Cause – United Nations Human Rights Office of the High Commissioner  – (https://albinism.ohchr.org/)
  3. June 13 International Albinism Awareness Day: Still Standing Strong – National Organization for Albinism and Hypopigmentation (NOAH)  – (https://www.albinism.org/iaad/#social)
  4. Raising Awareness about Albinism – Western Cape Government, South Africa – (https://www.westerncape.gov.za/general-publication/raising-awareness-about-albinism)
  5. International Albinism Awareness Day 2019 – Still Standing Strong – (http://www.minervaonline.org/the-international-albinism-awareness-day-2019/)

Source: Medindia

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