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Inclusion Tips

Curious about how to communicate and interact with young men and women with disabilities in education, employment, or everyday life? Look no further! In this section, we’ll explore practical inclusion tips that ensure that young men and women with disabilities are fully included in education, employment and everyday life.

Table of Contents

What Is Albinism?

Albinism is a genetic condition caused by mutations of certain genes that affect the amount of melanin that one’s body produces. For people with albinism, their bodies are unable to make a standard amount of melanin, the substance that is responsible for eye, skin, and hair color. So most people with albinism have very pale skin, hair, and eyes.

People with Albinism often have to protect themselves against sunlight and are prone to skin conditions such as skin cancer. They often have low vision and will need glasses for reading in combination with large print. They can also benefit from a range of assistive technologies such as screen magnifiers.

Important Note: Albinism is a genetic condition that people are born with. It is not a disease, it is neither contagious nor can it be spread.

Type Meaning
Oculocutaneous albinism (OCA):
This is the most common type of albinism. People with OCA have extremely pale hair, skin and eyes. There are seven different subtypes of OCA, caused by mutations in one of seven genes (OCA1 to OCA7).
Ocular albinism (OA)
Ocular albinism is not as common as OCA. Ocular albinism affects only one’s eyes – usually presenting as blue eyes though in some cases may appear pale, red or pink. Skin and hair color are usually normal.
Hermansky-Pudlak syndrome (HPS):
Hermansky-Pudlak syndrome is a type of albinism that includes a form of oculocutaneous albinism that includes a range of blood disorders, bruising conditions and lung, kidney or bowel diseases.
Chediak-Higashi syndrome
Chediak-Higashi syndrome is a type of albinism that includes a form of oculocutaneous albinism along with immune and neurological conditions

How to refer to a person with albinism

Avoid
  • Albino
  • Ghost
Use
  • Person with albinism

Remember, to use person first language: Instead of calling one by their condition, prioritize the individual and use their names.
Most importantly, ask the person with Albinism which terms they prefer.

Don’t forget to ask for the respectful word to refer to individuals with Albinism in your local language.

 

Common Myths about People with Albinism

Myth Fact
They are a source of wealth
This is NOT true
Having sex with a person with Albinism will cure HIV
This is NOT true
Their life span is very long
This is not true, people with Albinism have an average life span, but they have a higher risk of getting skin cancer.
They have spiritual powers
This is not true. They have the same powers as any other human beings
Albinism is contagious
This is NOT true
Using whitening cream can cause Albinism
This is not true. It is a genetic condition

Tips on how to include people with albinism

  • Include people with albinism in all stages of program implementation to ensure accessibility
  • Raise awareness about Albinism and address the myths surrounding the condition
  • People with Albinism may have low vision, so they may need large print.
  • Some may prefer using assistive technology like magnifying glass or screen-reader software and have soft copies of print materials (if possible or relevant).
  • People with Albinism may need a specific sitting arrangement for a training (under a tree, close to the front)
  • Measures need to be taken to protect people with Albinism from sunlight: e.g. shade if working outside, clothes and hats to cover their bodies in combination with sunscreen
  • Allow for preferential seating eg. near the black board or away from the windows
  • Provide training material such as books in large text material since individuals with albinism may have low vision
  • Provide copies of presentations, readings and other course material in soft copy
  • Provide accessibility materials and assistive devices such as sunglasses, sunscreen, or magnifiers based on individual need
  • Enquire from the participant with albinism on how best they can be supported in training
  •  Use inclusive language when referring to colleagues with albinism
  • Provide work materials such as files in accessible formats for example large text
  • Provide accessibility materials and assistive devices such as sunglasses, sunscreen, or magnifiers for colleagues with albinism
  • Provide low vision friendly workspaces. Ensure the workplace is well lit.
  • Train staff and colleagues on disability awareness and inclusion-ensuring myths about albinism are addressed
  • Measures need to be taken to protect people with Albinism from sunlight: e.g., shade if working outside, clothes and hats to cover their bodies in combination with sunscreen.
  • Most importantly, ask the individual with albinism how best they can be supported

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