CORE MESSAGES ONALBINISM EDUCATION

FEDERAL REPUBLIC OF NIGERIA

FOREWORD........................................................... 02

Introduction............................................................. 04

Core Messages on Albinism Education................... 06

Health............................................................. 06

Vision.............................................................................. 06

Skin................................................................................. 07

Hair................................................................................. 07

Education........................................................................... 08

Socio-Cultural Stereotypes................................................. 09

Effects of Myths on the Albino............................................ 10

How to arrest the Myths..................................................... 10

Psychological and Emotional............................................. 10

Effects of Stigmatization.................................................... 11

How to Ameliorate Stigmatization..................................... 11

Solutions to Stigmatisation................................................. 12

Self Esteem......................................................................... 12

Economic............................................................................ 12

Contents

01

FOREWORDThe Federal Government has taken keen interest on the high prevalence and the challenges faced by Persons with Albinism (PWA) in terms of their skin problems, vision, low self esteem, myths and stigmatization in recent times. Statistics show that the population of Persons with Albinism in Nigeria is about six million.

Education is a right with no prejudice to a particular child or adult. It has no respect for the colour of the skin or race, king or slave, age or sex. Necessary steps need to be taken to enhance the learning process of Persons with Albinism. The classroom teachers or literacy facilitators should appreciate the problems of pupils, students and adults with albinism so as to be able to manage those challenges facing them in their learning situations.

thAt the 57 National Council on Education (NCE) held in Sokoto, Sokoto State, st thfrom February 21 - 25 , 2011, the issue of the challenges faced by albinos in

terms of their vision, skin problem, lack of self-esteem, myths, stigmatization and stereotypes and its negative effects on their learning achievement was thoroughly discussed.

The Council in its wisdom, through the Honourable Minister of Education then, Prof. Ruqayyatu Ahmed Rufai, in order to mitigate the learning challenges faced by albinos, set up a 28-member Committee made up of representatives from the Federal Ministries of Education (FME), Health, Women Affairs and Social Development, Labour and Productivity, Justice, National Planning Commission other agencies, namely Nigerian Educational Research and Development Council (NERDC), National Agency for Mass Literacy, Adult and Non- Formal Education (NMEC), Universal Basic Education Commission (UBEC), National Orientation Agency( NOA), National Human Rights Commission (NHRC) and The Albino Foundation (TAF), to develop a Blue Print on Albinism education in Nigeria. After the development of the Blue Print, the Hon. Minister of State for Education, Chief (Barr) Ezenwo Nyesom Wike commissioned the same group to develop a National Policy on Albinism and the Implementation Guidelines.

The development of these documents is a further demonstration of the intention of the Federal Ministry of Education to ensure that various challenges experienced by diverse group in improving learning achievement is brought to the fore and solutions proffered as they are brought to the public domain to engender inclusiveness.

02

03

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. Specific areas of their lives require both governmental and societal intervention.

Social inclusion, political engagement and economic participation has become vital because majority of them are poor, uneducated and without any viable source of income. 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. This will provide the much needed balance that they require to positively exert their humanity and integration into society.

The current effort of NERDC and other relevant stakeholders in developing Core

Messages and Frequently Asked Questions on Albinism Education is an attempt

to create awareness on increased understanding and appreciation of albinism;

sensitize and advocate to governments, Policy planners, Learners, Parents,

Teachers and Communities on the challenges of albinism and its effects on

albinos with implications for schooling and on the general well-being of albinos.

It is my believe that when these documents are used to sensitize the public, it

will boost the image and worth of Persons with Albinism. It will also remove

those misconceptions, stigmatization, myths and superstitions from the general

public.

Prof. Godswill ObiomaExecutive SecretaryNERDC, Abuja.

04

INTRODUCTIONAlbinism is a peculiar condition with health, social, psychological, cultural, economic and religious challenges or implications. One major challenge of Persons with Albinism is Vision. They are not blind but their vision is not normal and cannot be corrected completely with glasses. Extreme far sightedness or near sightedness and astigmatism is predominantly found among people with albinism. It is painful to know that some Persons with Albinism lack the necessary support and care to manage their condition.

The unkind and rejecting attitude of members of the society makes it difficult for

Albino to deal with reality. It is common knowledge that many albinos live their

lives with their heads down and their backs turned against the world, many have

dreams like most people yet they do not see themselves living their dreams.

Somehow, their conditions and dreadful experiences have conditioned them

into thinking they are not capable of accomplishing what matters most to them.

Apart from that, there are weird myths about Albinos making them social

outcasts. Cultures around the world have developed many myths and

superstitions regarding Persons with Albinism.

There is no gainsaying that these myths, have in one way or the other, negatively

affected Persons with Albinism to the detriment of the society.

Many communities see albinos as cursed, so people tend to avoid them. These

social stigmas have lots of negative effects on day to day living of Persons with

Albinism, and also affect their performances generally in academics and literacy

classes.

There is also the issue of stigmatization. Albinos are subjected to serious and

extreme economic and social discriminations; are poor as they are unable to

indulge in meaningful economic activities. Stigmatization and discrimination

against Albinos prevent shared confidentiality. The Albinos are regarded as

second class citizens and treated as second fiddles in most places across the

globe. In Tanzania and Nigeria, Albinos are killed to avoid bringing evil to the rest

of non-albino people. In Uganda, albinos are used for medicine and in some

parts of the World, they are called derogatory names. They therefore resort into

hiding due to fear of being noticed in the public. In a classroom situation, such

discriminatory acts lead to children's withdrawal from classroom activities or

becoming truants, thereby lacking the confidence to compete favorably with

05

other class mates. Most of the challenges facing albino children and adults are

aggravated by the society in which they find themselves.

In order therefore to boost the image and worth of the Persons with Albinism,

Nigerian Educational Research and Development Council (NERDC), Federal

Ministry of Education (FME), The Albino Foundation (TAF) and other relevant

stakeholders developed Core messages and Frequently Asked Questions to

educate the public that albino children and adults have the same potentials with

non-albinos. The idea is to create awareness on increased understanding and

appreciation of albinism; sensitize and advocate to governments, Policy

planners, Learners, Parents, Teachers and Communities on the challenges of

albinism and its effects on albinos with implications for schooling and on the

general well-being of albinos.

All must remain firm to inclusive education system which enables albino

children interact with other non-albinos and further strengthen the esteem in

them, and make them know that they are like everybody else but just special in

their own way.

Prof. Kate Nwufo, mniDirector, Special Programmes Centre

Core Messages on Albinism EducationThere are a number of issues and challenges that hinder and affect the total well-being of an Albino. These include: Vision, skin Problems, Lack of Self-esteem, Myths about Albinism, Stigmatization, Stereotype and their effects on Learning.

Health* Vision

One major challenge of Persons With Albinism (PWA) is Vision. They are not blind but their vision is not normal and cannot be corrected completely with glasses. Extreme far sightedness or near sightedness and astigmatism is predominantly found among PWA.The vision problem in albinism results from the abnormal development of the eye because of lack of melanin and this often manifests itself in:* Crossed eyes (strabismus)* Low vision (visual acuity between 20/50 and 20/800)* Rhythmic, involuntary eye movements (nystagmus)* Farsighted, nearsighted often with astigmatism* Inability of the eyes to work together (absence of stereo vision)* “slowness to see” in infancy* Absence or decreased pigment in the eye which could lead to

cataracts in later life* Sensitivity to bright light and glare (photophobia)* Decreased pigment in the retina (foveal hypoplasia)

The vision problem in albinism cannot be corrected completely. However, Ophthalmologists and Optometrists can help compensate for their eye problems.

For people with visual acuity, a variety of devices are prescribed. Young children can be given glasses while older children can use bifocal glasses. Telescopic lenses mounted on glasses which is also referred to as biopics can also be used for low vision.* PWA require 6 times the regular amount of time to achieve ocular

focus with their eyes. This greatly puts a strain on the reading capacity of albinos.

* SkinAlbinos are susceptible to skin cancer due to frequent exposure of their

06

skin to the sun.

Skin cancer constitutes 80% of the health problems of albinos. Other skin conditions include: freckles, moles and seborrboeic keratoses(a growth).Due to their delicate skin type, PWA are most susceptible to skin cancer. Unprotected exposure to the sun increases the possibilities of skin cancer and other skin diseases in Persons with Albinism.* PWA should use sun protection cream (sunscreen lotion) for the

skin daily* PWA should use long sleeves shirts and a hat that shields them

from the sun* PWA should wear sunglasses/shades as needed* Avoid hard labour and outdoor activities in the sun * Avoid corporal punishment and bullying* PWA should avoid fluorescent light

How to do a skin self-examinationChecking your skin for new growths or other changes is very appropriate. The best time to do this examination is after a shower or bath. You should check your skin in a well lit room. You should use a full-length mirror and a hand-held mirror. It's best to begin by learning where your birthmarks, moles, and other marks are and their usual look and feel.Check for anything new. For instance,* New mole (that looks different from your other moles)* New red or darker color flaky patch that may be a little raised* New flesh-colored, firm bumps on the skin* Change in the size, shape, color, or feel of a mole* Sore that does not heal

Check your back, scalp, genital area, and in-between your buttocks. If you find any changes, you should see a dermatologist as soon as possible or a doctor who has special training in the diagnosis and treatment of skin problems.

* HairPersons With Albinism should avoid bleaching and dyeing of hair to reduce the effect of radiation.

PWAs should avoid using black thread and other black accessories on their heads to reduce the effect of radiation.

07

EducationEducation is a right with no prejudice to a particular child or adult. Necessary steps need to be taken to enhance the learning process of people with albinism. The classroom teachers or literacy facilitators should appreciate the problems of albino pupils, students and adults so as to be able to manage those challenges facing the albinos in their learning situations. Coping with Vision Challenges

* For their vision challenges, the teacher or facilitator should help the learners with Albinism to see the black board and other reading materials through decreased visual acuity due to light scattering within the eyes which leads to discomfort as they cannot see sharply because they cannot organize their eyes right

* People with Albinism experience nystagmus which is an irregular rapid movement of the eye back and forth or in circular motion with minimal visual field (very low sight). For improved performance and enhanced learning, the following steps are imperative for teachers and facilitators to follow:

* Use only Black Boards, any other color will not help an albino to read and write well.

* Keep white Board in their whitest while using black pens on them and vice versa when you use black board and a white pen.

* Re-organize the classroom so that persons with albinism are positioned in front and centre and very close to the black board.

* The re-positioning should be done carefully so that they will not stare at the sun light to see the black board.

* Monitor the general performance and progress of the people with Albinism during learning. Frequently introduce probing questions to prompt them to open up. Have one-on-one discussions with them so that they can be free to voice out the positive and negative side of learning. Let them feel at home by asking what you as a teacher could do for them to enhance their learning.

* Peer Support on daily basis and as subject demands; assign a capable student to each albino as peer support

* Give them equal rights and respect the personality of a person with albinism. Treat them equally like all other learners.

* Since Albinos need care, attention and protection from the sun, thus, they should be exempted from out-door activities under a harsh scourging sun

* They have low vision levels and therefore need help in overcoming this challenge during Teaching and learning. With this, they too can

08

make significant future contributions to their society.

How People With Albinism should be assisted by Teachers To improve in Learning achievement.* Increase the size of your hand writing on the black board* Write only on the centre portion of the black board* Do not write on the far left or far right of the black board* Writing on the chalk board should be bold enough with striking

contrast between the board ink and the ink color. Preferably, black chalk board with white ink as a writing device.

* Photocopy your notes. If re-positioning fails, teachers and Educators must prepare to photocopy their notes for them to use.

* Allow the use of technology such as small hand devices for example, monocular, or magnifier to assist them to enhance visual capability. Glasses and other visual aids large prints and Close Circuit Television (CCTV) as well as bright but angled light can help them even though, their vision cannot be corrected completely.

* Help your student with Albinism to read and write printed materials. Enlarge examination papers and other hand outs and try and work with eye doctors to determine the appropriate size of print for them (a font size of 20 and above).

* Create extra time for examination for them* There should be special room for this group of people in a regular

school which will serve as a Resource room where they can manipulate every available material with their peer groups to their advantage after general classes as it is done in the schools of the visually impaired.

* Teachers and facilitators should help the people with Albinism to carry out referral services, so that the albino learners are referred to medical experts or surgeons. A successful surgery may improve vision by expanding their visual field especially areas that the eyes cannot see while looking at one point and on the ocular muscles so as to decrease nystagmus and other related defects.

Socio-Cultural StereotypesThere are weird myths about Albinos making them social outcasts. Cultures around the world have developed many myths and superstitions regarding people with albinism. Some of the common myths and superstitions and misconceptions are:

* Albinos are sterile.

09

* Many people with albinism live a short life. * Having sex with a woman with albinism will cure a man of HIV. In

this regard, many women with albinism have been raped. * An albino child has a slim chance to make it in life. * Albinos have magical powers and as such their human parts could

be used to make concoctions that could bring wealth and fortune to an individual.

* Albinos are mentally retarded. * The presence of an albino in the family is a curse or a punishment.

Hence, families with albinos are stigmatised and avoided by kith and kin.

* Albinism is contagious.

Effects of Myths on the AlbinoThere is no gainsaying that these myths, have in one way or the other, negatively affected people with albinism to the detriment of the society. It is because of these myths that Nigeria has not come up with programmes and services to advance the course of the albinos, overcome their challenges, and of course, get fully integrated into the society. Some of the effects are listed below:

* Many people avoid marrying albinos either as wives or husbands* Parents do not like to invest on an albino child educationally and

economically* Albinos are victims of ritual murder and some of them are

murdered at birth* Families with albinos are discriminated against* In the school, they are ridiculed, abused, victimised and ostracised.

In most cases, they are denied admission especially, in public schools.

How to arrest the MythsThis can be arrested through advocacy and sensitization using mass media and traditional methods of information dissemination.

Psychological and Emotional* Stigmatization

Stigmatization refers to all unfavorable attitudes, beliefs and practices directed towards Albinos in the communities they find themselves.

It should be realized that stigma focuses on publics' attitude towards a person

10

who happens to be an albino.

Persons with albinism also face social and cultural challenges, as many see their condition often as a source of ridicule, discrimination and even violence. They are forced to operate in isolation due to negative attitude by those around them.

There has been alarming rise in witchcraft related killings of albino people in recent years, as witch doctors use the body parts for rituals. This incidence is common in some African Countries such as Tanzania, Burundi, and Zimbabwe, Nigeria, South Africa, Ghana and Cameroon.

Many communities see the albinos as cursed, so people tend to avoid them. These social stigmas have lots of negative effects on day to day living of the albino , and also affect their performances generally in academics and literacy classes.

Effects of Stigmatization* Albinos are subjected to serious and extreme economic and social

discriminations; are poor as they are unable to indulge in meaningful economic activities.

* Stigmatization and discrimination against Albinos prevent shared confidentiality. The Albinos are regarded as second class citizens and treated as second fiddles in most places across the globe. Albinos' care and support are a bit cumbersome.

* People ignorantly wish that Albinos should be killed immediately they are born or abandoned or put under severe situation of discomfort and if possible, alienated from others.

* Albinos are killed to avoid bringing evil to the rest of non-albino people.

* Albinos are used for rituals.* Albinos resort into hiding due to fear of being noticed in the public* These discriminatory acts lead to children's withdrawal from social

activities.

How to Ameliorate Stigmatization* Practical steps involve planning frequent seminars for parents,

teachers and other groups in the society, emphasizing the need to accept, embrace and love all albinos.

* Sensitization of the public on body protection for Albinos. They are to be allowed to wear special glasses, hats, long sleeves and to be

11

under the shade always.* There should be favorable policies for the attention needed for the

care of albinos.

Solutions to Stigmatisation* There should be enlightenment campaigns to educate the public

that the albino children and adults have the same potentials with non-albinos.

* Inclusive education should be emphasized at all levels.

Self EsteemIt is a known fact that people with albinism are not respected in the society. This scenario affects them socially, emotionally, educationally and economically. This is against the background of the negative perceptions surrounding their condition. It is imperative that if people with Albinism are to function actively in the society, the respect due to them must be given.

To foster respect in this context means to encourage non-albinos to admire the good qualities and achievements of the albinos irrespective of their natural challenges. It implies recognising and focusing on the potentials of the albinos instead of their weaknesses. It also implies accepting them into the society, giving them their rights and being empathetic with them, boosting their self-esteem, making the society albino-friendly, especially the school. In essense, it means equalisation of opportunities for the albinos and the dymystification of all the myths surrounding the albinos.

EconomicChances of persons with albinism gaining employment are limited, and therefore, their education is considered a waste of resources by some parents and guardians.

* PWA are not empowered in terms of skill acquisition.* Even those that have acquired relevant education and skills are not

employed. * Any work that exposes them to chemical, technological and

environmental hazards should be highly discouraged.

01