Disability and effects of climate change: Persons with albinism may die prematurely

Dr Nicodem Hakizimana, Founder and Executive Director of OIPPA-Rwanda, the Organization for the Integration and Promotion of Persons with Albinism, pointed out that the effects of climate change are affecting heavily those in this category and most of them may die prematurely.

He made the statement during the National Dialogue organized by UNABU (Rwanda Organization of women with disabilities) in partnership with RECOR and CERULAR through a disability inclusive climate action advocacy project aiming to contribute to enhancing intersection of gender and disability inclusion in Rwanda.

Different stakeholders including government institutions, private sector, civil society organizations attended and were shared assessment findings that showed that women with disability are more exposed to climate change effects in rural areas with less adaptive capacity. The assessment was conducted in Bugesera, Gakenke and Nyabihu Districts.

 “Many people with albinism work in agricultural sector that expose them to the sun. When it gets too much it burns their skin where they need to stay indoors for three to four days before the skin recovers”, Dr Hakizimana said.

According to him, this has a significant impact on the lives of persons with albinism including poverty due to long-term inactivity as it requires them to work in the morning and in the evening hours.

 “Additionally, the heavy sun also plays a role in causing skin cancer, which kills many people with skin disorders. People with albinism often die before the age of 40”, he highlighted.

Lalla Aicha Diakté, President of the SIAM Association suggests that for people with albinism, skin cancer is the biggest health risk. Tumours usually develop in young people (aged 25 to 34) who have no access to medical care and forced to withstand sun exposure as they strive to support themselves.

Studies suggest that most people with albinism die from skin cancer between the age of 30 and 40 (Report by I. Ero, independent expert for the United Nations, 2015).

Albinism lotions remain a pressing issue in Rwanda

Dr. Hakizimana said that the lack of albinism lotions is one of the challenges that still exist. However, the government of Rwanda has approved them and Rwanda Medical Supply is importing them.

The biggest problem is that some of the leaders of the health centers keep the lotions in the closed stores. Those who need it do not get it on time.

He said, “I suggest that these lotions be kept in the same place as other medicines to be accessible any time. We are worried that there will come a time when they will be expired in local pharmacies whereas the beneficiaries are struggling to access them”.

Nikuze Cecile, from Bugesera District who is smallholder farmer, said that her albinism condition prevents her from performing well due to inaccessibility of skin lotion.

As she could not find it at the nearby health center, she decided to go to the other one which is far from her home.

Gaudance Mushimiyimana, Executive Director of UNABU, said that the policies and laws on disability and inclusion set out priorities for addressing existing issues, but its implementation is still needed.

“It is the beginning of a campaign to advocate for the loopholes to be corrected. The existing policies and laws would be provided with the necessary budget, because putting a law in place is one thing and the budget for its implementation is another”, she said.

David Gacamumakuba, representing Rwanda Union of Little People, said “We call for continued advocacy to ensure that existing laws on disabilities issues are implemented.”

Untold stories of women with disabilities in climate change

Other obstacles in the journey to the climate inclusiveness action include insufficient advocacy for gender equity gaps and persons with disability.

Women with disability are more exposed to climate change effects in rural areas with less adaptive capacity due to their disability condition.

According to Mushimiyimana, they face problems of lack of access to adequate information that allows them to protect or cope with the effects of climate change.

“The way information is given is through radio, television or mobile telephone, but people with disabilities who experience long-term poverty, cannot afford them”, Mushimiyimana noted.

She said that during the evacuation of people affected by disasters, people with disabilities should be provided with special assistance.

Nibagwire Donatha who was representing Rwanda Climate Change and Development Network, said among their interventions during disaster management include first aid, special care and advocacy for the victims.

As the climate crisis accelerates in Rwanda, its repercussions disproportionately affect women and girls with disability whereby addressing the inequalities requires targeted resources.

Sifa Seraphine from the Ministry of Environment, praised the institutions that organized these discussions and the assessment conducted to highlight the challenges faced by women and girls with disabilities in coping with the effects of climate change.

She said that in future researches there will always be a way to reach all categories of people in order to get information on problems of a particular category.

In general, women and girls with disabilities, require special attention in times of climate change, especially in times of disasters, and receive relief and assistance before others.

It was also revealed that at the COP29, the international conference on climate change in Azerbaijan, all these issues affecting women and girls with disabilities, will be discussed.