The International Albinism Awareness Day Celebrations 2015

THE INTERNATIONAL ALBINISM AWARENESS DAY CELEBRATIONS 2015

Introduction

“There is no room in this 21st century for erroneous and harmful beliefs, or for discrimination on any grounds. People with albinism are just as deserving of dignity as every other human being. They have the right to live free from discrimination, deprivation and fear.”

Zeid Ra’al Al Hussein
UN High Commissioner for Human Rights

The approval of an International Albinism Awareness Day became necessary following reports of discrimination and strong human rights abuses against persons with albinism worldwide. Though the degree of discrimination differs in line with the myths and misconceptions prevalent in the various countries affected, one thing remains the same. The rights of persons with albinism are being violated both subtly and otherwise.
It therefore came as good news for persons with albinism and Non Profit and Civil Society Organizations engaged with these underserved group of vulnerable people, when the United Nations Human Rights Council adopted a resolution in 2013 calling for the prevention of attacks against persons with albinism, further creating the mandate of an Independent Expert on the enjoyment of human rights by persons with albinism on 26 March 2015.
Still on 18th December 2014, the General Assembly affirmed all previous efforts of the Council by adopting another resolution, proclaiming, with effect from 2015, 13th June as International Albinism Awareness Day.

The maiden edition of the celebrations in Nigeria consisted of a 5 day program spanning from the 10th – 13th of June with various activities.
Background
Albinism is a global phenomenon that occurs in people of all races and gender. Persons with Albinism exist across all strata of humanity, and the common term is “albino” or “persons with albinism” (PWA). Persons with albinism have absent or reduced pigment in their eyes, skin or hairs. This is as a result of the absence of a pigment called melanin which is essential for the full development of the retina. Lack of melanin in the development of the retina is the primary cause of visual impairment in persons with albinism. The general health of a child and an adult with albinism is normal and the reduction in melanin pigment in the skin, hair and eyes does not affect the brain, vascular systems of the lungs, immune system or other parts of the body.
Discriminatory socio-cultural myths and negative beliefs still permeate society’s perspectives and understanding about albinism. Most of the prevailing knowledge of the larger society about albinism is hinged on these socio-cultural myths and beliefs.
Much of the discrimination and neglect suffered by persons living with albinism is due mainly to ignorance on the part of members of the public. Traditional myths and superstition abound to explain its existence and stereotype albinos because scientific knowledge about it amongst the general public is limited. For instance, albinism is considered in many communities in Nigeria as a punishment from the gods for an ancestor’s wrongdoing or intercourse during menstruation. Based on this, family members of albinos also experience discrimination from their communities. Mothers of affected children are often accused of infidelity and subjected to a great deal of stigma and psychological distress.
To overcome stigma and discrimination, persons with albinism tend to be more withdrawn from social situations to avoid being noticed. Many become emotionally unstable, develop less assertive personalities and even begin to consider the society as being generally unkind and rejecting. These traumatic experiences haunt many albinos throughout the rest of their lives.
The need to secure the social and economic rights of persons with albinism will positively bridge the socio-economic gap that currently exists between them and other members of the society providing the much needed balance they require to positively exert their humanity, and be subsequently integrated into mainstream society.

Aim
The overall aim of the celebration is to create the much needed awareness that members of the public and governments at all levels need, on the challenges faced by persons with albinism and ensure the total eradication of all forms of discrimination, dehumanization and stigmatization associated with the condition, as well as provide the necessary tools that will improve their wellbeing.

MEDIA TOUR
Visit to BBC Hausa Service
On June 10th, the management and members of the Foundation paid a courtesy visit to BBC Hausa Service. They were received by Bashir Sa’ad Abdullahi – Bureau Editor, Habiba Adamu – Senior Producer/BJ and Chris Ewokor – English Reporter. The Bureau Editor started off by welcoming everyone and introducing members of his team. The Executive Director TAF, Enya Epelle, introduced members of the foundation and thanked the management of BBC Hausa Service for the warm welcome. A brief presentation on Albinism and TAF was delivered by Oluchi Iwuoha, the Assistant National Programme/Project Specialist of the foundation. In her presentation she highlighted the various milestones that the foundation has achieved over the years.
The CEO of the foundation, Jake Epelle, highlighted the role that BBC Nigeria played in bringing albinism issues to the spotlight thereby capturing the attention of the United Nations Office. He further commended the Bureau for their unrelenting efforts in following up on programmes of the foundation and urged the bureau to keep up the good work. The Bureau Editor once again thanked all and assured the foundation of their continual partnership.
Courtesy Visit to Nigeria Info Fm
Again, as part of the celebration the foundation paid a brief courtesy visit to Nigeria Info on June 11th, 2015. The Head of Station, Victor Nwaneri, welcomed the delegation. The CEO of the foundation thanked the management of Nigeria Info for the many times the foundation has been given free air time to feature in the station’s programmes and discuss issues on albinism. He further informed those present of the huge impact this has made on the public at large. He took the time to highlight programmes that the foundation had scheduled to mark the 1st International Albinism Awareness Day celebrations and requested that Nigeria Info be present to cover all them. The Head of Station thanked all and promised that the station would continue to lend their support to the foundation.

EVENT OPENING
Workshop – 12th of June
The Workshop which formed part of the activities to mark the maiden edition of the International Albinism Awareness Day celebration scheduled for June 13th 2015, started at about 10 am with prayers said by Christian and Moslem brothers. This was followed by the introduction of Special Guests of Honour seated at the high table. In his opening remark, the Founder/CEO of the foundation, Mr. Jake Epelle thanked the guests, especially the High Commissions present, for honouring the foundation by creating time out of their busy schedules to come for the year’s maiden edition of the International Albinism Awareness Day Celebration. He stated that the theme for the year was tagged, “PROMOTING AND PROTECTING THE HUMAN RIGHTS OF PERSONS WITH ALBINISM,” also adding that there was no consensus international theme for the year’s celebration, and each country had to formulate their respective themes as it best related to the various issues they faced in their countries.
In his opening remark, the Chairman of the occasion and a board member of the foundation, Prof. Anezi Okoro thanked all the participants for coming and re-iterated the need for more proactive actions towards alleviating the plights of persons with albinism by governments at all levels and international communities.
In his good will message, the High Commissioner of Canada, Mr. Perry Calderwood, while commending the founder of TAF for creating awareness about challenges persons with albinism face, pledged his country’s support to work with the Nigerian government in alleviating the plight of persons with albinism in Nigeria. He stated that the Canadian government is committed to promoting awareness in education around the world to ensure that persons with albinism are fully included in the society and should be treated like everyone else.
He added that he was optimistic that events like this when celebrated around the world will be effective in educating people that persons with albinism are like every other person irrespective of colour, race, gender and nationality.

In his goodwill message, Mr. Dirk Schulz, First Secretary/Attache for Economic and Development, Embassy of the Federal Republic of Germany said that, “a country is judged by the way the minority in that country is treated”. He said that most countries including Nigeria have deficiencies on how their minorities are treated. He called for a tolerance push in the way minority groups such as persons with albinism should be treated, adding that the European Union and his country were ready to support The Albino Foundation in Nigeria.

In her goodwill message, Ms Fatma Rajab, Head of Chancery, High Commission of the United Republic of Tanzania said that her country was willing to collaborate with TAF and share experiences. She said that the Tanzanian government had taken major steps to fight discrimination and killings of albinos in their country. She added that the President had nominated one person with albinism to be a Member of Parliament in order to bring awareness to the Parliament. She stated that the government of Tanzania had executed so many persons who had been charged with killings of persons with albinism in the country. She added that the government was creating strong awareness to educate members of the public to harmoniously live with persons with albinism.
In his goodwill message, the U.S. Ambassador to Nigeria, Mr. Entwistle represented by Dan Joyce, Political Counselor, U.S Embassy in Nigeria, commended the Founder/CEO of the foundation, Mr. Jake Epelle and staff of the foundation for working diligently since 2006 to raise awareness about albinism and empower persons with albinism in Nigeria. He stated that the United States government is committed to helping end violence and discrimination against persons with albinism as well as ensuring access to educational, economic and voting opportunities. He stated that the United States helped advocates for the establishment of the International Albinism Awareness Day and added persons with disabilities have been included as beneficiaries of the ongoing USAID Civil Society Empowerment Project. He added that the U.S government is ready to further the cause of persons with albinism in Nigeria but stated that real and sustained progress is dependent on the commitment and hard work of Nigerians. He encouraged the Nigerian Government and NGOs to remain sensitive in helping address the challenges facing persons with albinism, including vision impairment and those with severe sensitive to sun exposure.

In his goodwill message, the Chairman Nigerian Electricity Regulatory Commission, Dr. Sam Amadi apologized for coming late and stated that he had to forgo other engagements and meetings irrespective of his ill health to be in the event. He commended the foundation for being one of the best NGOs in Nigeria and for the advocacy drive in producing the only National Policy on Albinism globally. He reiterated the need for continuous support by the government and promised that NERC will continue to partner and support the foundation.

PAPER PRESENTATIONS
The first paper for the day was presented by the Director General, Institute for Peace and Conflict Resolution, Prof. Oshita Oshita. His paper was on STRATEGIES FOR DEVELOPING THE MINDSET OF AN ENTREPRENEUR IN PERSONS WITH ALBINISM. He laid emphasis on the objectives of the Institute, which he said seek to enhance the inclusion of persons with albinism and other vulnerable groups and added that persons with albinism have every right to be part of the socio-economic development of the country. He added that a country’s minority should be a part of the total economic development of that nation. He stated that the institute will continue to protect the minority, especially persons with albinism.
For economic empowerment of persons with albinism, he proffered the following solutions:
• Preference should be given to vulnerable groups in government’s policies and in skill development programmes
• Scholarships in skill development programmes should be given to vulnerable groups; especially persons with albinism and other disabilities
• The foundation should continue to research more on skill development programmes and other preventive measures of affecting the social challenges of persons with albinism
• Government should not short-change persons with albinism since so doing will affect the country’s man-power development

The second presentation was done by Prof. Douglas Anele, a psychologist, Board Member of the foundation and a person with albinism, of the University of Lagos. His paper was on BUILDING SELF CONFIDENCE: DISCOVERING AND BUILDING INHERENT VALUES WITHIN PERSONS WITH ALBINISM. He started by saying that the essence of being human is to face challenges. He talked extensively on the following areas:
• Cultivating self-confidence by persons with albinism
• Psychological attributes of oneself
• Albinism as a model
• Self knowledge as the best knowledge
• Albinism as a way of being courageous
• Success as a means of fighting discrimination

The third paper was on COPING WITH VISION IN ALBINISM, and it was presented by Dr. Edi Onyinye, an ophthalmologist and person with albinism. Her paper dealt extensively on general conditions of persons with albinism; common complaints in albinism; features in albinism; low vision; common challenges of low vision in persons with albinism; principles of improving vision; low vision aids; tips for better mobility; classroom adaptations; home adaptations; computer use in low vision; and educational considerations to be given to people with low vision.

The fourth presentation was on PREVENTING AND MITIGATING THE IMPACT OF SKIN CANCER IN PERSONS WITH ALBINISM, presented by Prof. Ifeoma Okoye. Her paper was able to answer the following questions as highlighted below:
➢ Prevalence or incidence of skin cancer in persons with albinism … What is the incidence of Skin Cancer in persons with albinism….Globally and in Africa?
➢ What are the socio-cultural economic factors that drive this high prevalence?
➢ How will we prevent skin cancer in albinos … Best Practices for preventing skin cancer in albinos
➢ How will you mitigate the impact of skin cancer on persons with albinism or what kind of interventions will you need to put in place that will impact skin cancer prevention
➢ Management of those who receive a diagnosis of skin cancer
➢ The challenges associated with the care of persons living with albinism are numerous and there is need to proffer solutions for improved outcome.

The last topic for the day was presented by Prof. Kate Nwufo of the Nigerian Educational Research and Development Council (NERDC) on EDUCATION: A TOOL TO FIGHTING SOCIAL DISCRIMINATION AGAINST PERSONS WITH ALBINISM. She talked extensively about The Concept of Education; Albinism as a Genetic Condition; Prevalence Rate of Albinism; Myths and Misconceptions about Albinism; Social Discrimination against Persons with Albinism; Impediments to Education of Persons with Albinism; and The Way Forward for the Comprehensive Education of Persons with Albinism.
After the presentations, there were questions and answers from the participants.

ALBINISM WALK
13th of June
Members, staff, stakeholders, members of the public and the media started converging at the venue of take off; Millennium Park, Abuja as early as 6am. The aim of the Albinism Walk was to further sensitize the public on the plight of persons with albinism. By 8am all the participants took off from the park through Transcorp Hilton to the National Human Rights Commission, Maitama, venue of the International Press Briefing. Participants, including children defied the early morning showers to make it to the National Human Rights Commission. One hundred and fifty persons participated in the walk, including children with albinism.

INTERNATIONAL PRESS BRIEFING
13th of June
The press briefing, which started immediately after the Albinism Walk, commenced at exactly 10:30am at the National Human Rights Commission with virtually all the media houses (18) in Nigeria in attendance . Prayers were said by Christian and Muslim brothers.
In his opening remarks, the Chairman of the International Press Briefing and board member of the foundation, Prof. Anezi Okoro called on the government at all levels to support albinism cause in Nigeria and ensure that persons with albinism are mainstreamed into the socio-economic development of the country.
In his remark, Vice Chairman of the Board of the Foundation, Prof Douglas Anele, also a person with albinism stated that he was a fulfilled person for being part of this year’s maiden edition of the International Albinism Awareness Day Celebration. He said that persons with albinism do not have any problems, rather, it is members of the public who see problems in persons with albinism. He added that it was as a result of these problems that members of the public tend to discriminate against persons with albinism. He added that the discrimination against persons with albinism cannot stop until PWAs themselves take laws into their own hands to stop it. He concluded by saying that persons with albinism should not make excuses but come out and make their voices heard.

GOODWILL MESSAGE BY ACTION AID: SPONSOR OF THE INTERNATIONAL PRESS BRIEFING
In her goodwill message, Hajia Suwaiba Jubrin of Actionaid, one of the supporters of the event stated that Actionaid supported the programme as a result of the stigmatization and discrimination meted out against persons with albinism by members of the public. She re-iterated the need for the government to continuously support not only the foundation but the albinism cause in Nigeria. She added that persons with albinism should be confident enough in themselves to fight the societies’ discrimination and other myths associated with albinism. She added that the organization will continue to support the foundation in order to achieve its objectives.

UN SECRETARY GENERAL’S INTERNATIONAL ALBINISM AWARENESS DAY GOOD WILL MESSAGE
A message from the UN Secretary General Ban Ki Moon on this year’s International Albinism Awareness Day celebration, was read by the Founder/CEO of the foundation, Jake Epelle. It centered on the need for the Nigerian government to take proactive steps that would ensure better lives for persons with albinism.
After the message, Mr. Epelle appealed to the Nigerian government to implement a Free Education Programme for persons with albinism in the country. He stated that such a programme is presently being practiced in Malawi. He said that such a policy would encourage persons with albinism get quality education which would enable them maximize their potentials.
He also appealed to the new administration to continue the free skin cancer treatment for persons with albinism on-going at the National Hospital and appealed that it be carried out in all teaching hospitals across the country. He added that the management of the foundation is working towards setting up a cooperative society that would help meet the financial needs of members. The founder also appealed to the Federal Ministry of Finance to pay for the sunscreen that had been shipped into the country, and was currently stuck at the port, so that persons with albinism could get them for free.
GALA NIGHT
13th of June
The International Albinism Awareness Day Celebration culminated with a Gala Night tagged An Evening of Albinism Awareness in Commemoration of the International Albinism Awareness Day. It started by 4:00 pm with the Nigerian National Anthem followed by opening prayers by Christian and Muslim brothers. The Gala Night was aimed at raising albinism awareness as well as honoring individuals and organizations that have supported both the foundation and the albinism cause in Nigeria. It also granted an opportunity to showcase the rich talents inherent within persons with albinism. Highlights of the activities included a fashion show hosted by Dr Fatima Ibrahim, founder of the Rewesuka Initiative and African Fashion Hall of Fame. The event paraded representatives from different countries including Liberia, Pakistan, Ethiopia, Tanzania, Kenya, India, South Africa and the rich cultural attires of different tribes in Nigeria. Songs, dance and poetic recitations from children with albinism formed part of the evening’s events. The foundation’s achievements were presented by the Assistant National Project Specialist of the foundation, Miss Oluchi Iwuoha, and the presentation of awards to worthy recipients was overseen by the Founder and CEO, Mr Jake Epelle.
Among those who were given awards were the Federal Ministries of Education and Health, German and Canadian Embassies, The Nigerian Television Authority (NTA), Federal Radio Corporation of Nigeria (FRCN), British Broadcasting Commission (BBC), and National Hospital, Abuja. Also included were some worthy individual Nigerians who have supported the foundation and the albinism cause over the years.
The Founder/CEO used the occasion to appeal to the present government and National Hospital Abuja, to continue the Free Skin Cancer Treatment for persons with albinism. He said that the foundation and Federal Government owe the National Hospital more than Fifty Million Naira (N50M) only, and appealed to the management of the National hospital not to discontinue the free treatment as a result of the debt.
In his response, the Chief Medical Director of National Hospital Dr. J.A.F Momoh, while receiving an award from the foundation on behalf of the hospital, said that the hospital would continue to partner with the foundation and would not stop rendering treatment to patients with albinism affected by skin cancer. He said that over 1000 persons with albinism had benefited from the free skin cancer treatment carried out in the hospital. Speaking on the over N50 million debt owned the hospital by the federal government for the free cancer treatment for albino patients; he called on philanthropic help from good hearted Nigerians in footing the bills, rather than placing all hope on government.

THANKSGIVING SERVICE
14th of June
Sunday marked the final winding down of the International Albinism Awareness Day celebrations, and it was marked with a thanksgiving service at House on The Rock, The Refuge, Abuja. Though the Senior Pastor, Pastor Obi Goodheart Ekwueme and his wife were unavoidably absent, the foundation was warmly received by the church.
CONCLUSION
The International Albinism Awareness Day will remain a day that persons with albinism worldwide will always be grateful for as it gave a very elevated platform, thanks to a very supportive Nigerian media, upon which the individual voices of persons with albinism could be loudly chorused.
We expectantly look forward to 2016.

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