This is one story as part of the Voices of People with Disabilities during COVID19 Outbreak series
Names may have been changed to protect the individuals mentioned in the story.
On 22 March, the first case of COVID-19 in Uganda was confirmed. Uganda has so far confirmed 557 coronavirus cases, with no death and 82 recoveries, according to the US-based John Hopkins University. But like many other countries, persons with disabilities are facing various challenges mostly caused by non-inclusive restriction policies and programs rather than the virus itself. This is particularly the case for under-represented groups of persons with disabilities whose requirements are hardly considered in policy-making even in non-emergency situations.
The experience of persons with albinism: when sun screen is a life-saving item
Peter is the Executive Director and co-founder of Source of the Nile Union of Persons with Albinism (SNUPA) in Jinja, eastern Uganda. This national organisation advocates for the rights of persons with albinism and provides practical solutions to problems encountered during COVID-19. Persons with albinism are often not regarded as persons with disabilities and as a consequence, they are left behind. Local and government leaders fail to include their perspective which results in their needs not being addressed. “Stakeholders must understood the challenges and risks that persons with albinism go through. We are part of the disability movement and if we work together we can have a stronger voice”, says Peter.
Persons with albinism lack the gene for producing melanin, a natural substance that gives colour to the hair, skin and eyes and protects the skin from the ultra violet light of the sun. Lack of this substance enhances the risk of skin cancer. Consequently, for those with albinism living in sub-Saharan African countries such as Uganda, using sunscreen lotions on a daily basis is a lifesaving must.
“When the lockdown happened, most people were unable to secure sunscreen lotions and yet they need it for their everyday lives”, Peter says. This situation can result in skin cancer and other health problems. Moreover, some persons with albinism in need of skin cancer treatment have encountered barriers in accessing it due to COVID-19. The main reason for this was lack of public transport. A newspaper in Uganda has voiced this issue.
Financially speaking, persons with albinism in the region are also struggling and are experiencing barriers to cover basic needs such as obtaining water or bread. Those who were involved in local businesses such as selling clothes have lost their job and income. “After the lockdown, businesses have had to close down, which has also led to starvation”, says Peter. Most of them are unable to go outdoors due to the lack of sunscreen lotions so many are forced to stay at home with no water nor food. For this reason, many persons with albinism have felt forced to accept jobs in the agricultural sector, to be able to secure an income. “Many persons are working in the fields, being exposed to the sun and with no sun protection” he says. However, this is for many the only option for survival. “If they do not go out, they will die anyway so they have to risk getting skin cancer”, says Peter. If sun screen lotions were to be available and accessible, which is currently not due to the scarcity and lack of transport, persons with albinism would be able to carry out their jobs safely.
Before COVID-19, Peter's organisation had set up a monthly programme to treat different people with skin cancer in the region. These programmes have stopped due to COVID-19 and as a result, there has been increased severe cases of sunburn and skin damage. “We have new cases of people with skin cancer who need immediate treatment, this means more people are going to die. We have to rely on fundraising as other resources are unavailable”, says Peter.
On the 29th of May, as reported by the media, SNUPA launched a programme that will help people with Albinism access sun screen creams. They will use a motor bike to move to the different parts of the country to make these accessible.
Betty Achana, representing The National Union of Women with Disabilities of Uganda (NUWODU), explains that since COVID-19 reached the country, very little attention and consideration has been given to the issues affecting persons with disabilities. No standard operating measures has been put in place nor advice has been provided specifically for persons with disabilities, taking into account their perspective. The response on COVID-19 so far has not been inclusive. “COVID-19 has exacerbated the challenges faced by persons with disabilities and especially women”, says Betty. Lately, persons with disabilities are faced with daily cases of violence and evidence has demonstrated an increased inaccessibility of health services, food insecurity and unavailability of support services specific for women with disabilities.
Women with disabilities who have to provide food for their children, mostly single mothers are the most impoverished during COVID-19 . Those who obtain an income through informal means have been severely impacted due to lockdown measures. “There has been no mapping that ensures persons with disabilities are included and receive protection materials”, says Betty.
“Stay at home measures and ban on public transport has a bigger impact for persons with disabilities”, she says. For instance, persons with psychosocial disabilities in need of medical assistance or those needing blood transfusions have faced barriers in accessibility. Health centers are distant from residential areas and lack of public transport has created new barriers in accessing healthcare.
Before the lockdown, most persons with disabilities in rural areas either had to go to urban areas to buy food or received it through government assistance. This is no longer possible due to lockdown and government restrictions in movement. Markets are also closed. However, women are allowed to sleep in the market place, which lacks hygiene measures. “Where are they going to sleep? And how are they going to get there?”, Betty wonders.
DPOs have been excluded from decision making and meaningful participation in the COVID-19 response. “The government has given out food but it hasn’t reached persons with disabilities”, she says. Also, the information is not accessible to all persons with disabilities. For example, details about when and where food will be distributed is announced through a megaphone, which is not accessible for deaf and hard of hearing persons. Also, with social distancing, many people are living alone and do not have access to an interpreter, meaning they do not have a means of obtaining such information. Also, messaging around COVID-19 is often alarming and depicting death. “For instance, they say, if you do not do this or that, you will die”, but this can be really challenging for some persons with psychosocial disabilities.
Teaching and schooling is now carried out online, but most of it is inaccessible for children with disabilities. For instance, many do not have access to smartphones, internet data, TV nor radio, or even electricity. “This means they are left behind in the learning process”, says Betty. Those living in rural areas are in a most vulnerable position.
