NAIROBI, Kenya, Oct 25 – A Mobile App that provides resources on Albinism in Kenya has been unveiled in Nairobi.
Non-Governmental Organisation, Positive Exposure-Kenya Programmes Director Jayne Waithera said the app dubbed “Albinism and I” will provide the needed knowledge on healthy living with albinism.
“The current state of life for those with albinism across Africa is bleak,” noted Waithera, “With such lack of knowledge, there is a crucial need to understand how to overcome daily challenges such as awareness and acceptance, mental health issues and self-confidence of persons with albinism, and this app will do exactly that.”
By working with hospitals, the community and local NGOs, the app aims to act not only as a resource to the society but also to midwives, family, and teachers.
With the purpose of providing support and changing the social narrative that allows for dangerous misconceptions of albinism.
Persons Living With Albinism (PLWA) still face stigma and challenges which are the main obstacle to their enjoyment of rights in the country hindering them from opportunities like access to education, health care, acceptability, justice, employment, social protection among others.
From Africa to Asia to North America, albinism conjures mystical spectra in the social imagination – a “blank slate” upon which cultural and religious fears and fallacies are inscribed.
Aside from ritual beliefs, societies commonly define this group as “Others” or outsiders.
People with albinism are easily recognized and targeted for persecution.
“As a country, we are yet to formally ensure that awareness on Albinism is brought to the frontline to demystify the stigma,” noted the Kenya National Commission of Human rights CEO Bernard Mogesa.
“Through the monitoring we did in thirteen counties, it is very shocking to realize that the place of PLWA in the country is still very low, which therefore means that certain structural, administrative and other re-arrangements must be done to guarantee the enjoyment of human rights of PLWA.”
Mogesa noted that the country is yet to ratify the optional protocol to the Convention on the Rights of Persons Living with Disability (CRPD), “The importance of this is that it will give PLWD and PLWA in general, to pursue alternative redress in the event of the violations of their rights and where the country or the formal systems in the country have not been able to address the violations.”
According to KNHRC, continuous research and other investigations is key to bring in new knowledge and information about Albinism which will inform policy direction and implementation.
-Access to Education by PLWA –
Mogesa lauded the government on the implementation of the Competency-Based Curriculum (CBC), adding that a child with albinism should not be left out in the CBC.
“We need to strengthen their cognitive, emotional, social, cultural and physical environment and provide the necessary knowledge and skill that would integrate them into the society.”
-Access to Health by PLWA-
“On Sunscreen distribution, Mogesa stated that steps have been made in the distribution of Sunscreen lotions to PLWA but again there are gaps in terms of proximity to those in the rural areas.
He further added that Assistive devices distribution is also important for children in schools and colleges.
However, there is a challenge around an aspect that is rarely addressed that is the mental health of PLWA. Yet it is one that is eating into society besides the challenges that the PLWA face.
“As a commission, we are engaging with the Senate. Nominated Senator Sylvia Kasanga has come up with a Mental Health Bill which is going to transform the way the country addresses the challenges f mental health in the country, which is now at the national assembly,” said Mogesa.
-Access to Employment by PLWA-
Even with the law in place that provides for five percent of opportunities reserved for PLWD, government ministries, departments and agencies are not doing well at all.
Practical support for HCPs (Health Care Providers).
The mobile app targets three main groups: Local hospitals and midwives, persons with albinism and their relatives/caretakers, and local NGOs, which will aid in spreading awareness and giving support to persons living with albinism.
“None of them can boost of 5pc opportunities that have gone to PLWA and PLWD. Which means that we need to move and comply with that law to ensure that the 5pc goes to these group,” explained Waithera.
The app, Waithera states, will provide a platform to address and demystify conditions that people find so complex as well as help in formulate policies inclined to meeting the needs of PLWA.
-What the App will achieve-
- Create a community of people with local community and people living with albinism; Provide them with relevant information, help build a community of affected people.
- Provide users with access to resources regarding albinism in their local areas; Example: Finding eye doctors for those with albinism, NGOs that are available in the area, Finding schools for children – aid and assistance, Access to mental health resources.
- Provide users with information regarding albinism. In the form of basic documents-learning and podcasts.
- Create an innovated digital solution to albinism awareness across Africa and offering an easy to use (the first) practical tool.
- Work hand in hand with a local hospital to conduct workshops with midwives on “best practices” regarding albinism in the birthing room.
Practical support for HCPs (Health care Providers).
The mobile app targets three main groups: local hospitals and midwives, persons with albinism and their relatives/caretakers, and local NGOs, which will aid in spreading awareness and giving support to persons living with albinism.
