My family believed I am exposed to burns because of human white color.

We have a Disability disease no one knows or feels about it until the close person to us. 

Khaled said aloud 

Explain the Difficulty obtaining sustenance from social development, Although he has all the medical reports that prove his need for it

Khaled, who is 30 years old, is not different from that of Safaa, who decided to stop studying due to frequent burns, inability of her parents to provide her with sunscreens, and being bullied and excluded by her peers at school.

Khaled and Safaa is an albino person (with albinism), which the United Nations defines as a rare condition that a person is born with. It is not contagious but rather hereditary. Albino is caused by the absence of melanin pigment in the hair, skin and eyes, which makes the affected person extremely sensitive and sensitive to the sun and bright light. And there are many types of it. The most common is oculocutaneous albinism, except for another type, which is ocular albinism. Albinism differs from vitiligo. Albinism is a genetic mutation that a person is born with, while vitiligo is an immune disease.

Albinos (albinos) have faced many hardships, as they are discriminated against on the basis of color and disability, lack of access to education, and the right to enjoy the highest possible level of health, and their suffering is exacerbated by their inability to obtain all their rights due to the apparent negligence and neglect towards them at all levels.

The United Nations (Albinism around the world) report for 2021 confirms the absence of any data on persons with albinism living in the countries of the Middle East and North Africa, including Jordan, which was confirmed by all the relevant Jordanian official authorities, including the Ministry of Health and the Ministry of Social Development , and the Ministry of Education.

Hala Hamad, director of the Directorate of Standards and Quality Control at the Supreme Council for the Rights of Persons with Disabilities, indicated that there is a problem with the data related to albino people (albinism), because it is a genetic mutation; It can show symptoms or be a carrier without showing any symptoms, in a way that is difficult to count due to the high cost of genetic testing, in addition to the multiplicity of data collectors.

The report included a questionnaire distributed electronically to albino people, in which respondents showed the absence of health care for them and the failure to secure their needs as people with disabilities, as well as the clear absence of the role of the associations concerned with them.

Compound impairment and minor classification

Many may think that albino people differ from ordinary people only in color or that they have a slight visual disability and that they can lead their lives normally without any obstacles, but Khaled says: "Albino people are not just a visual handicap, we have two types of disabilities, the albino is a complex disability."

Albinos (albinos) are classified among those with visual disabilities, and according to the Supreme Council for Persons with Disabilities (Albinos are generally classified as visually impaired and they are the lowest degree category of the blind). ; Which amounts to 11.2% of the total population, according to the 2015 General Population and Housing Census, and visual impairment is defined as: total or partial blindness.

This classification exacerbates their struggle to access full health care, which includes regular health check-ups, appropriate glasses, use of sunscreens and protective clothing, antioxidants and psychological support.

Albino rights expert and activist Rasha Al-Shallah confirms that there is a real problem in classifying albino people, as mildly visually impaired are not classified as persons with disabilities. Although they are albino people, other health needs are not met for them.

Although “The Rights of Persons with Disabilities Law looks at the impact of disability and not its origin, and on the basis of which people with disabilities are classified,” according to Hala Hamad, it did not consider the impact on the lives of albino people as a result of their physical disability that prevents their ability to go out. And exposure to sunlight, which affects their educational, social, professional, and psychological course, and it is sufficient for them to be visually impaired

This was confirmed by the eight interviewees who prepared the report on the classification of Albino people with visual impairment, which deprives them of obtaining what they need in particular of attention, health care or treatment in a manner that suits their health needs, in addition to bearing the costs of treatment, says Hossam Al-Thalatheni. Al-Shallah: “We, as albino people, do not have anything healthy.” Al-Shallah stresses that the health needs of albinos are not secured and that they need a law that obliges the concerned authorities to secure it.

visual impairment on paper

“Albinos find it difficult to find an eye doctor who understands their visual problem, or who gives us glasses as we need and comforts us. They used to ask me in the hospital where you are being treated by any doctor and tell me to go back to your doctor,” says the forty-year-old Bahaa.

Bahaa explains that the only treatment provided by government agencies free of charge was during his school years, where he used to check his eyes every 6 months in one of the centers approved by the Ministry of Health to get his effect on medical glasses after the school provided him with a receipt worth 30 dinars, and says: “The glasses Its specifications were very weak for my condition, and I used to see the class board in it, and my father would pay extra from his pocket to get a comfortable and suitable unit for me.

For his part, the Director of Health Insurance, Nael Al-Adwan, said that "the Ministry of Health provides medical glasses through schools for all visually impaired, and according to the need for each case, as it is possible to change the glasses if they are not suitable regardless of the period, so that the student can see the board and the teacher well. and complete his educational career efficiently.

Dr. Nakhleh Abu Yaghi, a consultant ophthalmologist, explains that albino people need regular periodic examinations and visual aids that include filters of different colors such as red, yellow or orange and with certain light waves that reduce their sensitivity to light, which is determined by trial and error.

Yaghi points out that albinism may be accompanied by other eye diseases, such as short or farsightedness, deviation, and nystagmus. They are also more likely to have cataracts, high intraocular pressure and retinal problems.

Optometrist Wael Al-Khatib explains that the lenses of albino glasses should be dark and colored to take into account their photophobia, and they should have protective layers that allow a greater amount of light to pass into the eye, noting that sometimes albino may need lenses that prevent blue color Issued from electronic devices such as phones and laptops, according to the degree of deviation, short-sightedness and long-sightedness and the nature of his work.

Al-Khatib explains that the value of good lenses ranges from 50 to 250 Jordanian dinars, depending on the specifications of the lens, such as the degree of aberration, dispersion and other additives that can be placed or placed on them, stressing that they need them every 6 months.

He adds; Their visual needs do not depend only on suitable glasses, but also go beyond their need for other visual aids, such as reading devices, far vision, color writing, and other devices related to visual acuity, and low vision.

Al-Adwan says: "Albino people are not considered persons with disabilities to whom medical exemptions or free health insurance apply, and they are treated as ordinary citizens.

The Director of the Directorate of Persons with Disabilities Affairs in the Ministry of Social Development, Khalifa Al-Sharida, indicated that Albino people are not included under the services provided by the Ministry of Development for persons with disabilities, as it provides its services for mental disabilities and autism spectrum through residential homes, inclusive service care, and early intervention.

Al-Shraideh added that poor Albino families can obtain glasses through the Ministry of Social Development and the offices of the National Aid Fund, after presenting the reports to specialized regional committees from the Ministry of Health and studying the social situation.