Challenges of living with albinism

 

Tendai Gukutikwa
Post Reporter

 

WHILE discrimination against people with albinism in the education sector can result in high illiteracy rate among them, Mrs Rebecca Madhikondi (37) defied all odds and attained a teaching qualification.

 

However, her road to success was not an easy one as she was brought up by a stepmother in Honde Valley in Mutasa District.

 

According to Mrs Madhikondi, it appears as if there is no light at the end of the tunnel for her struggles, despite graduating with a Diploma in Education at Mutare Teachers’ College in 2013.

 

For five years, she failed to secure employment despite graduating with flying colours.

 

In 2019, the happily married mother of four was ecstatic when she received a call informing her that she had been deployed to Sagambe High School in Mutasa.

 

However, as fate would have it, her joy was short-lived.

 

‘Persecutions’ started because of her skin pigment, a genetic condition caused by a deficit in the production of melanin.

 

“The persecutions I have gone through ever since I started teaching are more than what I can handle. The persecutions make it appear like being born with albinism is a sin before God and at times I haboured suicide thoughts because I felt like the world would be better off without me,” she said as she dropped some tears.

 

She said her colleagues and supervisors did not understand her plight and labelled her a cry-baby who wanted preferential treatment.

 

She said she was viewed as an outcast and at times was denied access to health services.

 

Mrs Madhikondi said since 2019, she has been seeking for a transfer from Honde Valley since the area has a hot and humid climate, with temperatures at times soaring to 36 Degrees Celsius, especially in summer, but her efforts have been hitting a brick wall.

 

 

She said due to the unbearable heat, she has to cool off under her bed.

 

“For me to feel better during summer, I have to get under the bed and cool off for about 30 minutes before I rush back to class where I will teach for an hour. Soon after that, I have to dash back to go under the bed again, otherwise I risk blindness, skin cancer and a myriad of other diseases.”

 

Mrs Madhikondi is a skin cancer survivor and fears its recurrence as she got the disease as a result of the hot Honde Valley temperatures in 2008.

 

“After the cancer was cured, we moved to Mutasa, but we had to go back to Honde Valley after I was deployed to Sagambe High School in 2019. I am always bedridden because of the harsh temperatures. What makes it worse is that when I fall ill and ask for permission to seek medical attention, I am at times denied that permission.

 

“At one time I had to call the Zimbabwe Rural Teachers’ Union’s president, Mr Martin Chaburumunda, for help after I got ill and was denied a few hours to rush to the hospital. Mr Chaburumunda told me to disregard that and seek medical attention and I did that. However, I got into trouble upon returning to work,” she said.

 

High temperatures are not conducive for people with albinism as they are exposed to too much ultraviolet light which cause many lifelong health complications.

 

Melanin protects the skin against ultraviolet light and provides the skin with colour production.

 

An expert, Ms Paidamoyo Chipunza said the condition may predispose people with albinism to lifelong physical and health problems such as visual impairment and ultra-violet induced skin damage.

 

“Among a myriad of other challenges that people with albinism are facing is being stuck in a hot environment. People with albinism should not be deployed to areas with hot temperatures.

 

“This is something that Government should look into so that their lives are not at risk. Buying sun creams and other necessities for their condition is already a challenge, and this should not be worsened by being stationed in a hot area,” she said.

 

Unlike Mrs Madhikondi, Ms Kuziva Chirinda, who also has albinism, has been a teacher for 18 years at Chitakatira Primary School where the temperatures are cooler.

 

 

She said the challenges she face have to do with bullying, name-calling, as well as derision from fellow teachers and parents of learners, thereby leaving her feeling lonely and alienated.

 

“There are parents who request for their children to be removed from my class because they do not want them to associate with a teacher with albinism. It no longer startles me when I find out that one morning a child will no longer be in my class.

 

“I also have some fellow teachers who do not stand next to me, while some look very uncomfortable when talking to me because of my condition.

 

“It is like I am inferior to them or they fear that albinism is contagious,” she said.

 

Ms Chirinda said as a result, she resorted to teaching each new class about albinism and how there is no difference between her and the learners.

 

Another teacher at Chitakatira Primary School, Ms Chipo Nyanhanda said as a person with albinism, some of her colleagues are quick to judge her because of her skin pigment.

 

She said lack of knowledge about albinism by colleagues affects her their performance at work.

 

“There is need for school heads and teachers to be taught about albinism. A lot treat it like a disease.

 

“Children with albinism are also facing challenges in schools.

 

“They are usually visually impaired and may be left without assistance such as additional instructions, optical aids, special text books, modified tests, and other learning materials with enlarged prints that are needed to learn successfully,” she said.

 

Mr Chaburumunda said there is need for Government to create a favourable working environment for people with albinism.

 

He said despite Government having made countless public interventions, the plight of professional persons with albinism in Zimbabwe is still a major concern as they are limited in their ability to participate in economic activity as a result of their condition.

 

“Unlike pigmented people, people with albinism have a limited job market and when they get the job, they are faced with many challenges.

 

“As a union, we ask for stakeholders to assist in matters that involve people with disabilities because we are all equal. They should not be treated differently from their colleagues, only because of their skin pigment.

 

“In the case of Mrs Madhikondi, we approached the relevant authorities to speed up her transfer, but it seems like it is to not working . While they are dragging their feet, her life remains in danger because she might contract skin cancer and other diseases,” he said.

 

Manicaland Provincial Education Director, Mr Edward Shumba said Government’s policy on deployment of teachers does not discriminate.

 

He said every teacher has an equal opportunity to apply for a transfer.

 

“Government does not discriminate when deploying teachers. The process of deployment is centralised as teachers are deployed from our head office and the Public Service Commission where the final decision is made.

 

“However, from these offices, they would not know whether someone has a disability or a condition that requires a special environment. A person has the right to accept or decline a post. He or she can wait for another deployment in their preferred area to open.

 

 

“If people decide to accept a post and later realise that the temperatures there are hazardous to their health, there is room for them to apply for a transfer after serving their probation period. One is allowed to apply for a transfer considering that they would have identified a vacant post at their preferred school,” he said.

 

Mr Shumba also said like any other person, teachers with albinism have a right to access health services, adding that denying them that is criminal.

 

The founder of Hope for the Future Trust, an organisation which is spearheading development projects within the albinism community, Ms Thandie Temptation Mhlanga said despite the interventions by Government, the challenges facing people with albinism continue to increase across the country, regardless of their profession.

 

“People with albinism face a difficult reality every day. We keep expecting change and growth within the professional community when it comes to how people with albinism are treated, but the shift has been slow,” she said.

 

Ms Mhlanga said school campaigns that hope to reduce stigma and demystify albinism, while educating professionals about the dangerous practices of targeting people with albinism because of their skin are her trust’s core mandate.

 

“Government and its development partners have managed to demystify albinism within the younger generation and those still in school. However, the adults still lack that knowledge as they are discriminating and stigmatising people with albinism. They are subjecting them to emotional abuse,” said Ms Mhlanga.