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The cost of living with Albinism

Albinism is a rare genetic disorder where you are not born with the usual amount of melanin pigment in your body.

Melanin is a chemical in your body that determines the color of your skin, hair and eyes.

Most people with albinism have very pale skin, hair and eyes. They are prone to sunburn and skin cancer.

Melanin also is involved in optical nerve development, so you may have vision problems.

Reports say that Albinism can affect people of all races and all ethnic groups.

It is therefore pertinent to highlight the challenges faced by persons living with albinism to enable us understand the huge cost borne by Persons living with Albinism (PWA)

At a recent gathering to mark the 2022 International Day of Persons with Disabilities organized by the Albinism Association of Nigeria (AAN), the President of AAN, Mrs Bisi Bamishe expressed gratitude to Persons with Albinism for their doggedness and resilience in contributing to the country’s socio-economic development.

Bamishe says that AAN as the umbrella of PWAs is charged with the mission to unite and protect the rights and interest of Persons with Albinism against discrimination and marginalisation in the society

According to her, the theme of the 2022 International Day is “Transformative solutions for inclusive Development: the Role of Innovation in Fuelling an Accessible and Equitable World“.

“I would like to highlight two examples of how innovation and technology can be leveraged for this purpose.

“First, Innovation can support disability inclusive development in employment, transportation, education, health, entertainment among others. New technology can open job opportunities for PWAs.

“It is worth noting that innovation for disability inclusive development can help reduce inequality and enable a disability-inclusive society in both the public and private sector.

“On this special occasion, we honour together the significant contributions of persons with albinism in our state, local and national development.

“We want to reiterate our call for better life for persons with albinism.

“We cry out against stigmatisation, marginalisation and discrimination.

“We are being maligned and denied rights to live normal life.

“Children at school are treated with no consideration for their disability while adults are denied access to jobs, public facilities among others,” Bamishe says.

The president says that because of the peculiar nature of PWAs, adequate medical care should be provided to them.

“Many are dying of skin cancer due to lack of preventive measures and prompt treatment for those suffering from skin cancer.

“We therefore, solicit for donation of sunblock lotion, hats and UV protection umbrellas.

“Local production of sun lotion will be a greater advantage,” Bamishe says.

She calls for the creation of an inclusive environment by the Nigerian government for persons with albinism.

She notes that PWA are multi-talented and calls on both the government and the organized private sector to tap into it to move the economy forward.

Bamishe says that the cost of living with albinism is high because of the special gadgets they use to protect their eyes, skin, and head.

She says that PWA use special eye glasses to aid their vision and always rely on sun cream to prevent skin cancer

Bamishe says that children of PWA suffer a lot in school because of poor vision

“So the cost is that it affects one’s education. This is because when your teacher is teaching you are unable to understand and see what the person is writing on the board,” Bamishe says.

She says that these children go through a lot to ensure that they grasp what they are being taught in school.

For Mr Sunday Smith, a don and a member of AAN in Osun State, PWAs suffer a lot of stigmatization emanating from their interaction with the larger society.

Smith says that PWA are downgraded in the society just because God chose to create them differently.

He urges the government to do more in creating awareness and sensitizing the general public on the peculiar nature of albinos to reduce societal stereotypes against them.

According to him, PWAs bare disability extra cost because of the nature of their skin and eyes, making them susceptible to skin cancer, if not properly taken care of.

Smith says that the costs of personal protective equipment are quite expensive for albinos and calls on the government and international agencies and development partners to come to the aid of PWAs.

He urges PWAs to put in their best and excel in their chosen profession in spite of the challenges facing them.

For Mr Tolani Ojuri, a political analyst and a member of AAN, PWAs should be given adequate considerations in public places. Bank queues, while boarding a bus, etc.

Ojuri appeals to the government to implement fully the extant laws as it concerns people with disabilities and persons living with albinism to prevent stigmatization.

“PWA should not be made to stand for too long on queues under the sun because of the impact on their skin.

“Operators and drivers of Bus Rapid Transport (BRT) should ensure that PWA are treated with dignity at bus stops and while boarding the bus because of their peculiar nature,” Ojuri said.

In conclusion, every human being enjoys a fundamental human right to exist and to associate freely in the society without abuse, stigmatization and the use of derogatory statements.

Persons with albinism deserve the care and respect of everyone because the creator has made them differently and wonderfully well.

It is therefore important that the government and citizens should do the needful in respecting the rights and dignity of PWA to ameliorate the challenges they face in life.

NGOs and well-meaning Nigerians are urged to reduce the huge cost (disability extra cost) borne by PWA in living out their daily lives.

A News Analysis written by Fabian Ekeruche, News Agency of Nigeria (NAN)



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