1. What is Albinism
People with albinism have little or no pigment in their eyes, skin or hair. They have inherited altered genes that do not make the usual amounts of pigment. Albinism affects people from all races. Most children with albinism are born to parents who have normal hair and eye colour for their ethnic backgrounds. Sometimes people do not recognize that they have albinism.
A common myth is that people with albinism have red eyes. In fact, there are different types of albinism and the amount of pigment in the eyes varies. Although some individuals with albinism have reddish or violet eyes, most have blue eyes. Some have hazel or brown eyes. However, all forms of albinism are associated with vision problems.
1.1 The problems of Albinism
- Visual problems
People with albinism always have problems with vision (not correctable with eyeglasses) and many have low vision. The degree of vision impairment varies with the different types of albinism and many people with albinism are “legally blind,” but most use their vision for many tasks including reading and do not use Braille.
- Skin problems
People with many types of albinism need to take precautions to avoid damage to the skin caused by the sun such as wearing sunscreen lotions, hats and sun-protective clothing.
But being blond and white is not a diagnostic of albinism.
1.2 The child in mind
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We will make this work about a girl called Charlotte. She is one of the friends of Elien and has albinism. She inspired us because she is now studying to become a teacher and she did all of her studies without redo a year in school. Sometimes she really had a big struggle to get all the help she needed to be able to follow the lessons. But with the help of other people she already made it this far and will make it even further in live.
With this we want to explain that if the special needs are satisfied in a good way, the person can follow the rhythm of her/his own life with more freedom and without so many counteraction.
2. Pedagogical work
| School | Community |
| - Extra teacher in the classroom specially for this child. (some days in the week)
- Bigger letters in books, tests,... - A binocular so she can look to things at the back in the classroom or small things in front of the room. - The child has to sit in front of the classroom, so she has a good look on the blackboard. - Special school desk (it sloped down, is magnetic and a blackboard). This helps the child to write nicer, better for their back and the teacher can write things on it for the child so they can see it closer. - Use big material if you use visual examples in front of the class. | - Professionals who are there to help the family, friends, children,... who are in contact with albinism (social workers, educators, psychologists, therapists).
- Adapted the resources of the neighbourhood for this kind of disability. For example; in the museums bigger posters with the explanations, the same with traffic lights, handrails... - Offer faster and cheaper ways to move around the city (special taxis for them). - Arrangement with the pharmacies to deliver protection lotions, creams... covered by the public health system. |
3. Protective factors
| School | Community | |
| Caring and support | - As teacher, let the child feel that she is accepted how she is. And let the other children of the class show her respect. - Tell the other children in the classroom something about albinism. And let them experience how it is to have a visual disability. - You as teacher, make time for the child, so she can come and talk to you when she needs it. | - Educate families and close people to love the child as she is. - Working from affection and not from hardness. - According to the UN Convention on the Rights of Persons with Disabilities: establish public, social, professional and material support for the specific needs of the girl. |
| Expectations | - Don’t expect as teacher that the child has to do everything as fast or as precise as the other children of the class. And also tell the child this. - Don’t ask the child to do something that she can’t do through her visual disability. Also tell the child why and that it isn't a problem and give her something she can do. | - Create an association where the families can share the diverse situations of daily life with the guidance of a professional. - Hold conferences or formations where professionals of education come and talk about the special needs, offering possibilities, skills, spaces... to the kids, friends and families to find a dignified life for every child. |
| Participation and involvement / opportunities | - Let the child help you as much as the other children in the classroom. Let her do the jobs she can do, so she won’t feel bad. - Make more time for the parents of the child. Take contact with them at the schoolgade, playground,... and make more teacher - parents moments for them. | - Integration space: creating specific resources where they can enjoy leisure time. It’s for children with albinism and other disabilities, but also the rest of the kids. - Include the association (as mentioned above) in the community, the social worker should find areas where the association can participate in the neighbourhood. |
4. Bibliography
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