VOICE stands for “Voluntary Organizations in Cooperation in Emergencies” and it is an NGO network promoting effective humanitarian aid worldwide since 1992. VOICE is the main NGO interlocutor with the European Union on emergency aid and disaster risk reduction, and it promotes the values of its 88 member organizations.
Albinism is found in all cultures in Nigeria and myths, stigma and discrimination differ from culture to culture which many considers it a taboo to have a child with albinism: Children with albinism have dropped out of school as a result of bullying from peers and discrimination from teachers; PWAs who passed employment tests and interviews have been denied employment; women with albinism have been impregnated and refused marriage by would-be suitors; mothers who have given birth to children with albinism have been kicked out of their matrimonial homes; most PWAs are ignorant of their health conditions which put them at risk of skin cancer and other health challenges.
Based on the above background, The VOICE project grant to TAF Plateau State intends to address the issues of negative perception, discrimination, cultural stereotypes, stigmatization and other misconceptions about albinism in Plateau State through engaging the relevant stakeholders, government, religious leaders, parents and also sensitize PWA’s themselves to become more aware of the challenges and create safe spaces to encourage high self-esteem, capacity building so as to become better informed about their condition and be PROUD of themselves and also know how to pursue their rights.
The Albino Foundation (TAF) having extended its advocacy and engagement for the rights of other disability clusters, competed for and won a European Union-funded project for the mainstreaming of persons with disabilities into the electoral and political processes in Nigeria under the European Union Support to Democratic Governance (EU-SDGN) project.
Since the inception of this project in 2008, TAF has constantly been in the fore, engaging with relevant stakeholders such as the Electoral Management Body (INEC, SIEC), political parties and other critical stakeholders in harmonizing synergies on the conduct of an inclusive election where persons with disabilities not only vote but are also voted for.
The EU-SDGN project has carried out several activities including the provision of data on disaggregated disabilities for use by the EMB, engagement with political parties, training workshops for electoral stakeholders, production of IEC materials and use of media, town hall meetings for sensitization of the disability community to mention a few. One critical activity on this project has been the training of persons with disabilities on electoral and political guidelines to enable them to participate in the process. These persons with disabilities were previously identified during the community outreaches as persons with charisma and interest in politics.
This EU project has given birth to many initiatives which the Albino foundation plans to execute in days ahead for persons with disabilities. Such initiative includes the Disability Inclusion Movement (DIM) which has already been approved by the Board of Directors of the Albino Foundation. The Disability inclusion movement seeks an inclusive society for all. The foundation plans to mobilize persons with disabilities to demand inclusion in all spheres of society. To this end, TAF hosted training for its internal Disability Inclusion team to horn their skills on how to run and maintain a movement. This activity happened in May 2020.
Following the training for persons with disabilities on the electoral and political processes and the increased interest of the trained participants in participating in politics, the foundation plans to carry out a mentorship program tagged “the mentorship league” to continually support persons with disabilities on their political journey. Credible facilitators with experience and knowledge will be brought in to mentor during the sessions which are planned to hold quarterly.
The Disability Inclusion radio program has been another successful feat for TAF in the disability inclusion movement. The radio program which holds in Ekiti on Ayoba FM, in Osun states on OSBC and on FRCN stations nationwide is an activity of the EU-SDGN project. These media channels have been a voice for persons with disabilities to demand for inclusion in happening around their locality. A clear example was the demand for and inclusion of persons with disabilities in the distribution of palliatives during the COVID 19 lockdown across states.
About the International Albinism Awareness Day (IAAD)
With deep concern on the widespread discrimination, stigmatization, dehumanization and brutal killings of persons with albinism across the World and the need for more public awareness on the needs and challenges of persons with albinism globally, especially in Africa, the United Nations Human Rights Council on June 13, 2013 adopted the first resolution ever on albinism. Later on, in its resolution 26/10 of June 26, 2014 the Human Rights Council recommended June 13 to be proclaimed as International Albinism Awareness Day (IAAD) by the United Nations’ General Assembly. The UN’s General Assembly, then, adopted on December 18, 2014 resolution 69/170 to proclaim, with effect from 2015, June 13 as International Albinism Awareness Day. The chosen date is reminiscent of the UN’s first ever resolution which was passed on June 13 a year before. Today, IAAD is celebrated around the world from Tanzania, to Argentina, to Senegal, to Fiji, France, the United Kingdom and Nigeria.
About the International Albinism Awareness Day (IAAD)
With deep concern on the widespread discrimination, stigmatization, dehumanization and brutal killings of persons with albinism across the World and the need for more public awareness on the needs and challenges of persons with albinism globally, especially in Africa, the United Nations Human Rights Council on June 13, 2013, adopted the first resolution ever on albinism. Later on, in its resolution 26/10 of June 26, 2014 the Human Rights Council recommended June 13 to be proclaimed as International Albinism Awareness Day (IAAD) by the United Nations’ General Assembly. The UN’s General Assembly, then, adopted on December 18, 2014 resolution 69/170 to proclaim, with effect from 2015, June 13 as International Albinism Awareness Day. The chosen date is reminiscent of the UN’s first-ever resolution which was passed on June 13 a year before. Today, IAAD is celebrated around the world from Tanzania to Argentina, to Senegal, to Fiji, France, the United Kingdom and Nigeria.
Living with albinism can be very challenging. Persons with albinism are susceptible to specific health conditions, principally dermatological and ophthalmic vulnerabilities, requiring higher levels of care and attention. Because of their delicate skin (low melanin) type, 99.9% of persons with albinism are vulnerable to skin cancer; thus skin cancer is the highest health risk persons with albinism face. Increased unprotected exposure to the sun enhances the possibilities of skin cancer and other skin related diseases in persons with albinism. Unfortunately, as a result of ignorant, poverty and discrimination persons with albinism especially those in the rural areas find it difficult to access preventive measures that will reduce their prevalent rate of acquiring skin cancer-related diseases. Even where facilities are available persons with albinism hardly afford the high cost of treatment resulting in many of these patients to look up to God until the time of their death. The Foundation records an average of 2 to 3 deaths every other month as a result of skin cancer. It is based on these challenges that The Albino Foundation in partnership with Federal Ministry of Health, Nigeria Television Authority, Federal Radio Corporation of Nigeria, African Independent Television Authority and National Hospital, Abuja is putting up this Ivory Air Ball Concert that will enable us not only provide treatment for skin cancer patients in Nigeria.
About the Ivory Aid Ball Concert
The funds for the skin cancer trust fund will be raised through a concert called “Ivory Aid Ball” (IAB), which is to be held in April 2, 2020 at The Jake’s Place, Silver Bird Galleria, Abuja. The Ivory Aid Ball (IAB) is a special fundraising concert targeted at raising finance for persons with albinism suffering from skin cancer. The concert, which is to be held annually is targeted at raising Five Hundred Million Naira every year. In order to make the concert eventful, International Artist such as Salif Keita from Mali and other notable Nigerian Artists will be performing at the fundraising. The event will be aired live in two National Televisions and two Radio Stations. Dignitaries made up of Diplomats, Government Officials, Captains of Industries, and Philanthropic individuals within and outside the country will be attending the event.
Why the Skin Cancer Trust Fund
The overall purpose of this Fund is to mitigate the prevalence of skin cancer among persons with albinism in Nigeria by providing complete financial coverage for the treatment cost for 100 diagnosed skin cancer patients with albinism annually.
As major sponsors of the event, there will be a two (2) month pre-event publicity in two national Televisions and two radio stations. There will also be intermittent publicity during the event.
Please, find below categories of sponsorship packages for selection.
Categories of Sponsorship Packages
– Full Sponsorship
– 5 Tables
– 40 tickets
– Branding on all publicity materials
– Three television stations & all radio slots
– Venue branding
– Speaking slot
– 4 Tables
– 32 tickets
– Branding on select media
– Two television stations & 1 radio slot
– Speaking slot
– 3 Tables
– 24 tickets
– Branding on select media
– One television stations & 1 radio slot
– 2 table & 16 tickets
– Branding on program materials
– Radio slot
In order to reduce the spread and impact of COVID 19 on persons with disabilities globally, The Albino Foundation-DISABILITY INCLUSION NIGERIA PROJECT in alignment with the recommendations of International Disability Alliance (IDA) has come up with simple steps to mitigating the virus within this vulnerable population. The basic measures includes:
1.0 Persons with disabilities
Covering mouth and nose with flexed elbow or tissue when coughing or sneezing. Dispose of used tissue immediately;
Washing hands often with soap and water (at least for 20 seconds);
Cleaning frequently touched surfaces and objects such as assistive devices like wheelchairs, magnifying glasses, crutches etc.;
Washing regularly of clothing and other linings;
Staying home when sick;
Contribute to the national or local emergency response;
Proactively reach to all related authorities including the health system, the national media, the crisis response headquarters and education authorities to:
Sensitize authorities on how the pandemic as well as the response plans may disproportionally impact persons with disabilities;
Offer tailored practical tips on how to address accessibility barriers or specific measures required by persons with disabilities Practice social distancing guideline;
Organisations of persons with disabilities should be involved in the dissemination of the necessary information that will mitigate the spread of the virus.
Government officials and service providers,including emergency responders must be trained on the rights of persons with disabilities, and on risks associated to respiratory complications for people who have specific impairments (e.g. whose health may be jeopardized by coughing);
Awareness raising on support to persons with disabilities should be part of all protection campaigns;
Mass media communication should include closed captioning, national sign language, high contrast, large print information;
All communication should be in plain language;
In case the public communications are yet to become accessible, alternative phone lines for blind persons and email address for deaf and hard of hearing may be a temporary option;
Sign language interpreters who work in emergency and health settings should be given the same health and safety protections as other health care workers dealing with COVID19;
Sign language interpreters must be engaged in the media to communicate COVID 19 prevention messages to the deaf or hard of hearing. There may be appropriate alternatives for optimum access, such as interpreters wearing a transparent mask, so that facial expressions and lip movement is still visible;
Alternatives are particularly important as remote interpretation is not accessible for everyone, including people with deaf-blindness. Solutions should be explored with concerned people and organizations representing them. Any plans to support women should be inclusive of and accessible to women with disabilities;
Programs to support persons with disabilities should include a gender perspective;
Persons with disabilities should not be institutionalized as a consequence of quarantine procedures beyond the minimum necessary to overcome the sickness stage and on an equal basis with others;
Any disruptions in social services should have the least impact possible on persons with disabilities and should not entail abandonment;
Support family and social networks, in case of being quarantined, should be replaced by other networks or services;
In case of public restriction measures, persons with disabilities must be supported to meet their daily living requirements, including access to food (as needed with specific dietary requirements), housing, healthcare, in-home, school and community support, as well as maintaining employment and access to accessible transportation;
Government planners must consider that mobility and business restrictions disproportionately impact persons with reduced mobility and other persons with disabilities and allow for adaptations;
Providers of support services must have the personal protective equipment and instructions needed to minimize exposure and spread of infection, as well as should be proactively tested for the virus;
In case of food or hygienic products shortage, immediate measures must be taken to ensure that people with disabilities are not left out as they will be the first group to experience lack of access to such items;
Any program to provide support to the marginalized groups should be disability-inclusive;
Public health communication messages must be respectful and non-discriminatory;
Instructions to health care personnel should highlight equal dignity for people with disabilities and include safeguards against disability-based discrimination;
Rapid awareness-raising of key medical personnel is essential to ensure that persons with disabilities are not left behind or systematically deprioritized in the response to the crisis;
Communications about the stage of the disease and any procedures must be to the person themselves and through accessible means and modes of communication;
Prepare COVID19 instructions and guidance in various accessible formats in local languages;
3.0 Members of the public
Disinfection of entrance doors reserved for persons with disabilities, handrails of ramps or staircases, accessibility knobs for doors reserved for people with reduced mobility;
Introducing proactive testing and more strict preventive measures for groups of persons with disabilities who are more susceptible to infection due to the respiratory or other health complications caused by their impairment;
The COVID19 crisis and confinement measures may generate fear and anxiety, demonstrating solidarity and community support is important for all, and may be critical for persons with psychosocial disabilities;
Help establish peer-support networks to facilitate support in case of quarantine;
Organize trainings on disability inclusion for responders;
Compile an updated list of accessible health care and other essential service providers in each area;
Digital media should include accessible formats to blind persons and other persons facing restrictions in accessing print;
Persons with disabilities who are affected with COVID19 should not be discriminated against in any form
SUMMARY OF THE REPORT OF THE STAKEHOLDERS’ REPORT VALDATION MEETING ON A BASELINE SURVEY OF PERSONS WITH ALBINISM IN OYO AND PLATEAU STATES HELD ON THE 29TH OF JULY, 2019 AT THE LAPS NEW WORLD HOTEL, JABI-ABUJA
Resulting from the lack of documented information on persons with albinism in the country, The Albino Foundation partnering with the Australian Embassy carried out a baseline survey of persons with albinism (PWAs) in Oyo and Plateau states. The aim of the Baseline survey was to enable proper documentation of PWA and the needs and challenges they face. However, the need to critique the report led to the Stakeholders’ Report Validation meeting in order to present credible result to the public.
The Validation meeting began with an introduction by Mr. Damian Ivom, the Project Manager of the Albino Foundation. He welcomed and thanked all participants and stated the aim of the meeting, after which an opening prayer was said by Miss Ruth Madujemo.
Mr. Jake Epelle, the founder of the Albino Foundation gave a brief opening remark. He stated the aim and objective of the meeting, and the need to have accurate and comprehensive data of PWAs. He commended the method used in the survey, which he said is globally recognized.
Mr. Damian Ivom again explained the need for the survey, which he said was aimed at creating knowledge of the challenges PWAs and their parents face on a daily basis, so as to plan accurate intervention for them. He said that the initial survey carried out in six (6) states exposed more presence of PWAS in Kogi than in any other states, hence the survey in Oyo and plateau states respectively.
Mr. Roland Arabome, the consultant of the report who works with PRL Research Centre, presented the survey report to participants for review and intelligent critique. He presented the aim of the survey and stated that the survey was able to address its aim; one of which is to enhance mainstreaming of persons with albinism into the socio-economic and political segment of the country. He further stated the research method used in the survey and explained that the percentage of men with albinism was higher than their female counterparts. He explained that the report revealed the negative effects and consequence of discrimination on PWAs.
Mr. Roland Arabome, in his final statement, stated that the report was conducted in an international and polite manner, and that the use of vernacular was employed for respondents who couldn’t understand English language.
At the end of the report presentation, questions were asked and suggestions were made by the participants. All the questions raised were adequately treated and the suggestions were noted and debated upon.
One of the field workers by name Abel Mwendaga shared his experience on the field. Thereafter, Mr Damian Ivom gave a vote of thanks bringing the meeting to a close at 12:30 pm.
REPORT OF A ONE DAY SENSITISATION WORKSHOP FOR TEACHERS AND EDUCATORS IN ENUGU STATE ON INCLUSIVE QUALITY EDUCATION FOR CHILDREN WITH ALBINISM HELD ON 11TH OF JULY, 2019 AT CRYSTAL PALACE HOTEL, GRA-ENUGU
Owing o severe discrimination and a general lack of information, teachers and personnel trained in special education especially for children with albinism are hard to come by. The teachers and staff who work with children with albinism in schools throughout the country generally do not have special education training that will cater for children with albinism. In fact, many schools do not have the luxury of hiring teachers with any extensive training especially that would take care of children with albinism. This has been a challenge in imparting knowledge to children with albinism in schools.
Group photographs of participants at the end of the workshop
Unfortunately, there has not been any special training for the teachers that will ensure that they are adequately equipped with the skills to cater for children with albinism. Teacher training is one of the most promising opportunities for improvement in providing pupils and students with albinism genuine access to the curriculum. Albinism identification is on the rise, while the push for inclusion and least restrictive environment has begun to erode the traditional wall between special and regular education settings. The need for ‘high quality’ teachers equipped to meet the needs of all learners becomes evident to provide not only equal opportunities for all, but also education for an inclusive society. It is the knowledge, beliefs and values of the teacher that are brought to bear in creating an effective learning environment for pupils, making the teacher a critical influence in education for inclusion and the development of an inclusive school.
Teachers should identify pupils with albinism at the start of their school career, so that appropriate measures can be put in place immediately to alleviate their visual impairment, protect their skin and facilitate their learning. Teachers must be in a position to confront the knowledge and experiences which prospective teachers in inclusive education bring to their learning and be able to engage in dialogue about complex issues of culture, language, albinism and inclusion.
The aim of the sensitization workshop is to improve the knowledge and skills of primary and secondary school teachers that provide special education and related services for children with albinism in regular classroom in order to improve enrollment, retention and transition.
Cross section of participants at the workshop
3.0 Opening Session
The programme started at 10:30 am with an opening prayer said by one of the participants. In her welcome remark, the Permanent Secretary, Enugu State Ministry of Education, Mrs. Nwanneka represented by Mrs. Ayogu, Director of schools in the Ministry thanked and appreciated the Foundation for bringing the programme to the state. She stated that the world is moving towards inclusive education where all children learn in the same environment irrespective of their disability, age, sex, colour, ethnicity etc. She added that the participants were selected from their various schools so as to ensure that they step down the training to their respective schools. She urged participants to be attentive and learn one or two things that will help them in the teaching and learning of children with albinism and other disabilities in their classrooms.
In his opening remark, the Founder/CEO of the Foundation, Mr. Jake Epelle thanked the teachers and educators for coming to the workshop. He stated that the workshop was very dear to him following his experiences while going through schools when he was very much younger. He stated that based on his experiences, he would not want other children to pass through such an ugly situation. He added that the workshop was to sensitise and educate the teachers and educators on how to deal with children with albinism and other disabilities in the classroom in order to enhance enrollment, retention and transition that will help them live a better life in their adult age. He stated that persons with albinism are no longer called albinos since the word is derogatory. He urged the participants to use the rights language when addressing persons with albinism since it will help build their self-esteem.
Also in his welcome address, the Enugu State coordinator of the Foundation, Mr. Emeka Ugwu thanked the participants for making out time to be part of the workshop. He specifically thanked the Permanent Secretary Enugu State Ministry of Education and the Director of schools for mobilizing the teachers and educators for the workshop. He stated that teachers are the life wire of any nation and urged them to be dedicated to their duties by ensuring that all children are mainstreamed and are learning effectively in the same environment.
4.0 Plenary Session (Experience Sharing)
The experience sharing was meant to provide insight on what children with albinism pass through while attending school. People selected at the plenary were a person with albinism, parent of a child with albinism and a teacher. The session was anchored by Enugu State Chapter Coordinator of the Foundation, Mr. Emeka Ugwu.
The first to share her experience was Mrs. Helen Ozor, a teacher. She stated that she does not have a child with albinism in her class but have two children with albinism in the school. She said that the children were twins and were always with each other. She mentioned that they were very reserved and always on their own not relating with other children in the school. She said she took interest in them and decided to approach them and make friends with them. According to her, she discovered that the children were reserved as a result of stigma associated with albinism and would not like to mingle with their peers in school. She stated that she had to council them and made sure they participate in all school activities especially the indoor ones. With that experience, according to her the two children became very active in school and were friends with most pupils in the school. She advised teachers to always look out for children with albinism and other disabilities in their school and help them overcome their self-esteem. She said it will go a long way in improving their academic and adult live.
The second participant who shared her experience was a mother of a child with albinism, Mrs. Ijeoma Nduka. According to her, when the child was a baby, people saw her backing her child and thought she was carrying a doll and made gest at her. She said she was used to being embarrassed until she summoned courage and confronted it by standing bold and telling people off whenever the occasion came up. She stated that when the child entered Nursery school, she complained of not able to see the class board, then she decided to go to the school and complained about what the child was passing through to the class teacher and told her of the need to give her all the necessary assistance to enable her cope in the classroom. She added that after meeting with the class teacher she became so intelligent and bold. The woman stated that in every class the child moves to, she always visit the teacher and ensures that the teacher gives the child all the necessary assistance. She added that it has helped the child to grow both in confidence and in academics and has been in the first position since then. She urged teachers to always help in grooming every child especially children with all forms with disabilities. She added that if they are stigmatised and discriminated in school it will affect the child’s overall performance in class and in growing up as an adult.
A mother of a child with albinism sharing her experience
In her experience sharing, a person with albinism, Miss Vivian Anyadiofu, teacher and member of the Albino Foundation, Enugu Chapter stated that when she was growing up and attending school she fought on a daily basis due to name calling from peers. She said she had a twin sister who is not a person with albinism. She said being a person with albinism contributed to her being a very shy person; she was always withdrawn from other peers especially when she was in primary school. She stated that she overcame the stigma and name calling immediately she entered secondary school due to encouragement from her parents and family members. She urged teachers to always encourage children with albinism in schools and out of school by counselling and protecting them from their peers in school.
To sum up the experience sharing, Mr. Emeka Ugwu shared his experience on how he almost dropped out of school on three occasions. He stated that the first was when he was in primary school while the other two occasions was in the University. He stated that if not for his parents especially his mother and a friend in the University he would have been a drop out due to frustration from school. He told the teachers that their actions and inactions in the classrooms will determine the future of thousands of children with albinism they will be tutoring and urged them to be good ambassadors of albinism and other disabilities.
5.0 Technical Session
The first presentation at the workshop was on Albinism, Myths and Misconceptions by the Founder/CEO of the Foundation, Mr. Jake Epelle. He stated that most challenges faced by persons with albinism, especially children with albinism in schools was as a result of erroneous traditional and cultural beliefs in some communities in Nigeria. He said that such beliefs has hindered the socio-economic and political development of persons with albinism in Nigeria. He outlined some of the myths and misconceptions associated with albinism and urged participants to discard such beliefs which is false and should be disregarded. Some of the myths and misconceptions included:
Myth: The mother slept with a white man.
Fact: This is not true. Children born with albinism may look ‘white’ due to absent or reduced pigmentation of melanin but are not products of cross race relationships.
Myth: That a child born with albinism is conceived when a woman has intercourse while she is menstruating.
Fact: This is biologically impossible.
Myth: That albinism occurs to people who fail to eat salt.
Fact: Albinism is a genetic condition and has nothing to do with salt.
Myth: That albinism is a punishment or a curse from the gods or ancestral spirits due to wrongs done in the family
Fact: Albinism is a genetic condition that is passed on from parents to children. Many people are carriers of this recessive gene. Albinism is not a curse.
Myth: Persons with albinism cannot see during the day but see well at night.
Fact: Persons with albinism have visual impairments due to lack of melanin pigmentation in the retina. They can see during the day and also at night though they may either be short or long sighted and may need sight aids.
Myth: That people living with albinism are blind
Fact: Persons living with albinism are not necessarily blind but all forms of albinism are associated with some form of vision impairment. However they have enough vision to carry out daily living activities albeit with a variety of challenges.
Myth: That body parts of persons living with albinism make potent charms that can make people rich and successful
Fact: This is absolutely not true. It is a myth spread by witchdoctors in order to enrich themselves at the expense of others
In his conclusion, he urged the participants to use their position as teachers to make a difference in the society by ensuring that all learners learn in the same environment without any form of discrimination.
The second presentation on Health Challenges in Albinism was presented by Mr. Damian Ivom, National Programme/Project Manager of the Foundation. He started by defining what albinism is and what it is not and types of albinism. He stated that there are two major challenges experienced by persons with albinism, which includes, skin and visual challenges. He spoke about signs of skin cancer, in which he stated that skin cancers develops primarily on areas of exposed to the sum most, such as, the face, lips, scalp ears and neck, legs especially in women etc. Skin cancers affect people of all skin tones, however, persons with albinism are at greater risk because of the absence or deficiency of melanin. Skin cancer is better managed if found early; any change on your skin especially in size or colour such as a mole, spot or mark, scaliness, roughness, oozing, bleeding, a non-healing ulcer, a change in sensation, e.g. itchiness, tenderness or pain could be a sign.
A cross section of participants at the workshop
He also talked about the risk factors for skin cancer, which he highlighted as:
Fair skin: regardless of skin colour anyone can be at risk
History of sunburn
People living at high altitudes: increased risk of exposure
Excessive sun exposure
Precancerous skin lesions: actinic keratoses
History of Skin cancer
Irradiation: Ultraviolet light therapy
Exposure to substances: Arsenic
In addition, he stated that cumulative sun exposure /damage is the major cause of skin problems in persons with albinism. He said that skin cancer can be prevented by the following points:
Early introduction of sun protection methods in childhood
Avoid the sun during the peak ultraviolet radiation hours 10am and 4pm.
Schedule outdoor activities for the other times of the day.
Wear your sunscreen year round on all exposed parts of the body.
Wear protective clothing that covers your arms and legs
Broad brimmed hats and sunglasses.
Stay under the shade, use umbrellas etc.
Regular skin check and reporting changes to your doctor. (Many patients present late with advanced cancers)
On low vision in albinism, he explained that low vision is a condition in which the best corrected visual acuity is below 6/18 or visual field of 20 degrees or less in the better eye and added that most persons with albinism have low vision. He highlighted the challenges in low vision as seen in albinism to include:
Difficulty in reading.
Difficulty seeing things on the blackboard.
Clumsiness in moving around.
Poor facial recognition and social interactions.
Limitation in some sports activities.
Feelings of frustration and anger.
He also highlighted how low vision could be managed in persons with albinism especially children, which he outlined as below:
Using enough light and position the light well.
Moving closer to the object or vice versa.
Making the object bigger.
Making the object bolder.
Using other senses.
In his conclusion, he recommended the following in order to mitigate the challenges faced by children with albinism in classroom:
More time be allotted to students with low vision to complete visual tasks.
Dictation of notes or giving out copies to them instead of letting them copy from the board.
Large print books be available.
Teachers and parents should monitor how well a child is doing with the measures used and not to assume anything.
A cross section of participants at the workshop
The third and last presentation was on improving the teaching and learning for children with albinism in schools by the Founder/CEO of the Foundation, Mr. Jake Epelle. He began by posing the following questions to the participants, what can I do? How can I ensure that a child with albinism have access to quality education? He followed the questions with what should be done, which includes, showing compassion; understanding that the child has needs; understanding that the future of the child depends on the teacher and ensuring that the child learns in the same environment with other children.
His presentation looked at the following in order to ensure that children have access to quality inclusive education:
Ensure that children with albinism are seated where they can best see the blackboard. Please allow them to experiment with sitting closer to the board to see if this will help them.
Larger print or use of a hand-held magnifier helps some children. If this becomes embarrassing to them as they grow older, at least see whether they might be willing to use these aids for home study. Many places where photocopies are made can enlarge text.
Class teachers can give a child with albinism his/her note to copy before the lesson.
For many children with albinism, increasing the contrast in print is even more effective than increasing the size.
Excuse children with albinism from physical education class or adapting your program to meet their needs.
Permitting the child to wear dark sunglasses whenever he is outside.
Please do all you can to protect these children from teasing and ridicule born out of ignorance.
If some classrooms in the school are noisier than others – (noise from busy roads, trains, airports or factories), the school should be flexible and move the class who has a child with albinism (as well as classes who have children with hearing impairment or other disabilities) to a less noisy classroom.
You may need to spend some time in school assembly talking about albinism.
Spend some time to explain to the child with albinism about the process of learning in class before they start, especially in classes where series of different activities are required, such as in science experiments, physical education, cooking and crafts classes.
Read everything that is written on the blackboard aloud and slowly.
Try to speak while facing the children (not away from them) because children with albinism greatly depend on their hearing to receive information, and they need to hear you clearly.
At the end of the presentations, questions were asked on various issues on albinism. Some of the questions include:
Is albinism hereditary?
Can skin cancer affect persons without albinism?
How can teachers protect children with albinism in schools?
Is there any way albinism can prevented
These questions were adequately answered by Mr. Epelle and Mr. Damian
At the end of the presentations, the following recommendations were proposed by the participants:
More of this sensitisation workshops should be organized at the grassroots.
There should be booklets on teachers’ education for children with albinism.
Teaching aids should be provided in schools to facilitate adequate teaching and learning for all children irrespective of disabilities.
Reading devices should be provided for children with albinism and other visually impaired children to aid their performance in class.
Parents and persons with albinism should educated and sensitized on the issues and challenges associated with albinism.
In conclusion, the workshop provided opportunity for the participants to understand the issues and challenges faced by children with albinism in classrooms and its immediate environment. The participants were highly excited and confessed that the workshop has opened their eyes on albinism, which they said will go a long way in alleviating the many myths and misconceptions associated with albinism both within and outside the school environment. They promised to put in their best towards carrying the message to their various schools. At the end of the workshop, 171 teachers and educators (Male: 15 and Female: 156) attended the workshop.
REPORT OF A ONE DAY SENSITISATION WORKSHOP FOR JUDGES/MAGISTRATES AND LAW ENFORCEMENT AGENCIES ON THE PROTECTION AND ENFORCEMENT OF THE RIGHTS OF PERSONS WITH ALBINISM HELD AT HIGH COURT COMPLEX, INDEPENDENT LAYOUT, ENUGU ON THURSDAY, MAY 16, 2019.
1.0 OPENING SESSION
The workshop commenced by 1:00pm with an opening prayer by Barr. Christopher Okorie from National Human Rights Commission, Ebonyi state and a resource person. This was followed with self-introduction by participants. Heads of agencies that attended the workshop were: Commandant (Mrs.) Chinwe Kannu, Commandant Nigeria Security and Civil Defense Corp, Enugu State; CP Ndubuisi Ogbodo, Comptroller Prisons, Enugu State; A.C. Bot (SP), Comptroller of Custom in Charge of Enugu, Anambra and Ebonyi States; Barr. Nwoye Nwadi, representing Attorney General and Commissioner for Justice, Enugu State; SP Barr. Paschal Nwachukwu, representing the Commissioner of Police Enugu State.
Participants in a group photograph
In his welcome address, the Founder/CEO of the Foundation, Mr. Jake Epelle thanked the participants for creating time for this one day sensitization workshop. He stated that the aim of the workshop was to sensitise the participants on the issues and challenges faced by persons with albinism especially in accessing justice system. He added that the workshop will improve the knowledge of the participants in facilitating the justice system for persons with albinism especially women and children with albinism.
In her goodwill message, the Chief Judge of Enugu State, Hon. Justice N.P. Emehelu who was represented by Hon. Justice N.N. Nebo stated that it was a good honour for her to be part of this all important sensitization workshop. She thanked the leadership of the Foundation for this proactive step towards ensuring that the rights of persons with albinism are protected. She stated that persons with albinism should be protected from discrimination, abuse and violation of their rights. She concluded by saying that the courts will always ensure that the rights of persons with albinism are not violated and urged all stakeholders to do same.
2.0 TECHNICAL SESSION
The first technical session was a plenary, which looked at the Myths, Misconceptions, experience sharing and moderated by the Founder/CEO of the Foundation, Mr. Jake Epelle. The Panelists were Prof. (Mrs.) Uchenna Ijoma a woman with albinism and Mr. Emeka Ugwu, Enugu State Coordinator of the Albino Foundation. The plenary session was put forward for the panelists to share their experiences on the challenges they faced while growing up and how they were able to overcome those challenges. It was equally for the participants to get first-hand information on what living with albinism is like from people who have succeeded in live irrespective of their condition. The two panelists highlighted their experiences coping with the health challenges, discrimination from family members and the society, bullying and discrimination from peers and teachers while in school, frustrations and how they were able to overcome these challenges.
A cross section of participants at the workshop
The next technical session was a presentation on the Role of the Judiciary/Law Enforcement Agencies in the protection and Enforcement of the rights of persons with albinism and was presented by Barr. Christopher Okorie from the National Human Rights Commission, Ebonyi State. He started by saying that every human person has rights by the very fact that she/he is a human being. He stated that it was based on the above that the United Nations declaration on human rights and other international instrument, the African Charter on human and peoples rights and other regional human rights instrument, chapter 2 and 4 of the constitution of the Federal Republic of Nigeria, especially the “Discrimination against persons with disabilities” (prohibition Act 2018) which seeks to criminalize the act of discriminating against persons with disabilities. He also talked about the challenges faced by persons with albinism and how to ensure that they are mainstreamed into justice system. He concluded that the challenges of protecting and enforcing the rights of persons with albinism should not be left on the shoulders of the Judiciary and law enforcement agencies. He stated that human rights are better protected through preventive measures.
Dignitaries at the workshop
The second and last presentation was presented by Barr. Sylverster Ohiri of the National Human Rights Commission, Enugu Office. He did a PowerPoint presentation on “Persons with Albinism and the UN Convention of the rights of persons with disabilities”. He stated that the Committee on the Elimination of Discrimination against Women has referred to women with albinism as a group of women in a vulnerable situation, meaning that they are at risk of being victims of multiple discrimination. He added that “According to the Special Rapporteur on violence against women, its causes and consequences, violence against women is deeply rooted in multiple layers of discrimination and inequality”. He said that as these layers of discrimination intersect, violence against women intensifies. Addressing systematic discrimination and marginalization is crucial to ending violence against women.
He stated that the Committee expressed concern at reports that women and girls with albinism had been targeted in ritual killings, recommending that the State party should protect them. The Committee on the Rights of the Child has also expressed serious concerns at reports of killings of and attacks against children with albinism, addressing this issue under the right to equality and non-discrimination (art. 2 of the Convention), among other rights. In the case of Burundi, the Committee expressed concern in its concluding observations that “de facto discrimination of children prevails [in the country] and is tolerated in the State party vis-à-vis … albino children” The Committee encouraged the State party to review legislative instruments and adopt a comprehensive strategy, including awareness-raising, to eliminate discrimination on any grounds and against all vulnerable groups, particularly children with albinism.
Prof. (Mrs.) Uchenna Ijoma sharing her experience as a person with albinism at the workshop
2.1 Responses from Heads of Agencies
Prisons: According to the Heads of Prisons, Ndubuisi Ogbodo, he stated that no person with albinism have been admitted into the Nigerian Prison. He added that even though the Prison Service has never had a person with albinism in their custody, the workshop has further educated him on the issues and challenges faced by persons with albinism and how to address them if he come in contact with them in his course of duty. He thanked the Foundation for organizing this workshop.
Nigeria Security and Civil Defense Corp (NSCDC): The Commandant of NSCDC, Chinwe Kannu shared her experience about a lady with albinism who was employed in the service and was being molested by a superior officer. She stated that she had to approach the lady who shared her challenges with her. She added that after sharing her experience with her she confronted the male officer even though the Officer was her superior at that time. She stated that persons with albinism face a lot of challenges both at home and in their work places. She urged participants to see persons with albinism as a human being and should be treated as such. She stated that her experience with the lady in her office was the first time she came across the challenges faced by persons with albinism and since then she has been protecting persons with albinism who has one challenge or the other especially when the person approaches her.
Nigerian Custom: the Comptroller of Custom, SP A.C. Bot stated that persons with albinism have never been caught with any form of contraband goods. But added that they should keep it up and should not hide under this guise and commit crime. He stated that abled persons can use this opportunity to lure them into committing crime which could dent their image and reputation in the country.
Commissioner of Police: the representative of the Commissioner who is also in charge of Legal Department in the Enugu Command of the Nigerian Police, SP Barr. Pascal Nwachukwu stated that they have never had any person with albinism in their custody or having committed crime. He stated that accolade should be given to persons with albinism. He stated that crime prevention should be everyone’s business and should not be left in the hands of police or security agencies alone and urged the Foundation to maintain the tempo of the sensitization so as to get to other parts of the country and more importantly those at the grassroots.
Chief Judge: the representative of the Chief Judge of Enugu State, Justice N.N. Nebo stated that she did not know much about the issues and challenges faced by persons with albinism before the workshop. She stated that the workshop really opened her eyes on the issues and how to address them. She urged the participants to judiciously make use of the knowledge they have gained to ensure access to justice system for persons with albinism and other disabilities.
A cross section of participants at the workshop
The workshop provided opportunity for the participants to understand the issues and challenges faced by persons with albinism and how to ensure that persons with albinism are mainstreamed into the justice system. The participants recommended that similar sensitization workshops should be taken to the grassroots where majority of the public lack the understanding on the issues and challenges faced by persons with albinism. They also recommended that traditional and religious leaders should be sensitized to reduce the myths and misconceptions associated with albinism and the culture and tradition. In all, thirty three (33) persons (17 males and 16 females) attended the workshop.
Highlights of the 2019 International Conference on Albinism, International Albinism Awareness Day Arts & Fashion Show.
In Nigeria the 2-day National Conference on Albinism begins on the 12th to the 13th of June, 2019 at Chelsea Central Area in Abuja. Day number 1. 12th the National Conference with all the TAF coordinators day 2. 13th International Albinism Awareness Day (IAAD)
3 events in two days; day one, all day topical issues on albinism, day two, all day plenary sessions on thematic discourse on albinism and an evening of arts and fashion runway shows featuring young men and women with albinism “See poster for details”
Get Updates And Stay Connected -Subscribe To Our Newsletter
THE ALBINO FOUNDATION
The Albino Foundation envisions a society with equal opportunity for Persons with Albinism. We are an advocacy organisation that empowers persons with albinism and educates the society about albinism in Nigeria and the world
Phone:09088757490 or 08171576797
Address: Plot 990 Nal Boulevard, Central Business District, Abuja.
OUR STORY Living with albinism can be very challenging. Persons with albinism are susceptible to specific health conditions, principally dermatological and ophthalmic vulnerabilities, requiring higher levels of care and attention. Because of their delicate skin (low melanin) type, 99.9% of persons with albinism are vulnerable to skin cancer; thus skin cancer is the highest health risk persons with albinism face. Increased unprotected exposure to the sun enhances the possibilities of skin cancer and other skin related diseases in persons with albinism. Unfortunately, as a result of ignorant, poverty and discrimination persons with albinism especially those in the rural areas find it difficult to access preventive measures that will reduce their prevalent rate of acquiring skin cancer related diseases. Even where facilities are available persons with albinism hardly afford the high cost of treatment resulting to many of these patients to look up to God until the time of their death. The Foundation record an average of 2 to 3 deaths every other month as a result of skin cancer. It is based on these challenges that The Albino Foundation in partnership with Federal Ministry of Health, Nigeria Television Authority, Federal Radio Corporation of Nigeria, African Independent Television Authority and National Hospital, Abuja is putting up this Ivory Air Ball Concert that will enable us not only provide treatment for skin cancer patients in Nigeria.