Jane Waithera IAAD

Q&A: Jane Waithera on Albinism Awareness

Light for the World joins the global community in marking International Albinism Awareness Day, a time set aside to bring attention to the campaign for equal social and economic rights and inclusion of Persons with Albinism(PWAs). This year’s theme is “Strength Beyond All Odds”, aptly chosen to showcase the achievement of PWAs throughout the world despite the barriers stacked against them. Jane Waithera embodies this spirit and has risen above the stigma and challenges thrown her way from birth. Today, she stands as a mouthpiece in her country Kenya and outside its borders, advocating for better treatment and opportunities for PWAs. She shares some of her thoughts with us.

Q: Kindly tell us about your work at Light for the World and how your personal journey with Albinism has been valuable for the role.

A: I am a program officer at LFTW, who supports the implementation of projects that economically empower Persons with Disabilities (PWDs) through inclusive employment and entrepreneurship. My lived experience with albinism places me in a position of empathy as I have firsthand experience of the economic marginalization of PWDs. Being able to serve the PWDs community to change the narrative of disability from that of a charity case to it being a value-added to the economy is one of the greatest joys of my job.

Q: How has the organization helped lend a voice to PWAs and the PWDs community as a whole?

A: LFTW, through its interventions on promoting inclusion, has played a great role in linking PWDs with opportunities and has helped give them a platform to utilize their full potential.

Q: As we gear up to celebrate the International Albinism Awareness Day, what strides do you feel have been made locally and globally towards the empowerment of people with albinism?

A: We have various achievements to be proud of. The UN declaring June 13th as International Albinism Awareness Day is significant as it highlights the challenges that PWAs go through and allows us to showcase our resilience globally. The adoption of the Regional Action Plan on albinism by the African Union is another huge milestone as reported violations and attacks on PWAs have an African face. Having AU member states endorse this framework trickles down to countries being held accountable to the point of having an obligation to have national action plans on albinism to safeguard and protect PWAs.

At the country level, we have seen a better representation of PWAs and budgetary allocation of 100M Kenya Shillings to meet our essential needs. Having an albinism-specific question in the 2019 census was a landmark achievement as it goes a long way in having data-guided policy influences and interventions that support PWAs. The recent appointment of Hon. Lady Justice Mumbi Ngugi as a judge of the court of appeal resonates with this year’s IAAD theme: Strength beyond all odds. It is a great inspiration to many generations of PWAs to scale any heights they wish to.

Q: With increased public awareness on albinism and disability-inclusivity, do you feel that society is moving past traditional misinformation and adopting a positive mental shift towards persons with albinism?

A: Yes, there is a great mindset shift on albinism as it is no longer a taboo conversation in both mainstream and traditional media. Persons with albinism are progressively taking their rightful places in society.

Q: Has the stigma attached to children born with albinism been on the decline in the region and what have been the trends in cases of abandoned children?

A: We still have cases of neglect, and abandonment linked to a lack of information. A very common scenario is where men abandon their wives on the birth of a child with albinism. This calls for continued awareness-raising, especially among the primary points of contact like midwives, immediate family, teachers, and other grassroots caregivers.

Q: Still on awareness, have we been successful in changing beliefs and superstitions around albinism in Africa? Have incidents regarding ritual killings of PWAs for misconceived medicinal and wealth purposes reduced?

A: People with albinism – a lack of pigmentation in the skin, hair and eyes – are frequently shunned and attacked across many African countries due to lack of knowledge about the rare genetic condition. The attacks are still ongoing and are rampant. There is a very recent reported attack of a 2-year-old girl with albinism from Zambia whose hands were chopped off in May.
The rituals in some countries target not only body parts. Women risk rape because of myths suggesting that having sex with a woman with albinism can cure AIDS.

Q: What are other pertinent issues that PWAs still struggle with today?

A: Awareness-Raising information about albinism has increased manifold with special features on major news media such as the BBC, CNN, and Aljazeera. However, there remains work to be done in promoting understanding of the condition in both the public sphere and also in particular sectors that are most relevant to the enjoyment of human rights by PWAs such as within the family setting, the health and education sectors.

Another challenge is insufficient and inaccessible social protection measures. Social protection programmes for PWDs are often designed in such a way that people with albinism only benefit from them because of their visual impairment. Even for measures related to visual impairment, the application procedures can be confusing and often depend on a medical assessment. Social protection measures need to extend beyond recognizing visual impairment to include other barriers to interaction, such as susceptibility to skin cancer. They should ensure increased social and economic participation to reduce poverty. Specific measures for people with albinism should include the provision of free sunscreen, lip care, after-sun products, and protective clothing. Free screening, detection, and treatment of cancer, free optometric and ophthalmological tests, and ready access to visual aids and other adaptive devices such as eyeglasses and monocular are also important.

Insufficient data collection and analysis contributes to the marginalization of those whose specific needs are poorly understood or ignored. Over the years many civil society organizations have cited the lack of data on PWAs, particularly women and children with albinism, as a key challenge in designing, developing, and implementing initiatives to support PWAs. There is an urgent need for capacity-building related to data collection, which should in any context follow a human rights-based approach and include the appropriate participation of the relevant population and their representatives. Confidentiality and data privacy are particularly important in countries where attacks occur. National censuses offer an opportunity to collect data on people with albinism, but only a few instances have been documented to date. The national censuses of Namibia, Kenya and the United Republic of Tanzania are examples of good practices of collective data on people with albinism.

Addressing harmful practices related to accusations of witchcraft and ritual attacks (HPAWR) is crucial. Challenges in conceptualizing HPAWR and developing effective specific measures have impeded attempts to establish clear legal boundaries around such practices. Fortunately, the African Union Disability Protocol and the Plan of Action on Albinism indicate a legal approach and several measures respectively. When implemented, they are likely to be transformative in protecting PWAs at risk of physical violence.

Q: What would be your recommendations to best deal with these challenges?

A: Adopting a human rights-based approach to data collection, and building national capacity to disaggregate data that capture the situation of people with albinism. Such data should be disaggregated at a minimum by gender, age, health status, and rural-urban prevalence. During data collection, there is a need to apply best practices methodologies, including but not limited to, Washington Group on Disability Statistics, and include a specific question in censuses aimed at identifying PWAs.

Regarding social and economic rights, we should continue to adopt measures to address poverty, considering the 2030 Agenda for Sustainable Development, which pledges to leave no one behind, including PWAs. These include providing reasonable accommodation for visual impairment and adequate protective measures against attacks on PWAs in schools and at places of work as well as improving access to healthcare for PWAs, focusing particularly on affordable or free sun protection products and skin cancer treatment. Such health programmes ought to be accessible to persons in rural or remote areas at little or no cost to them. The training of community health nurses and the use of mobile clinics have been identified as best practices in this regard. Social services should be accessible to PWAs without discrimination, with reasonable accommodation, and in a manner that does not subject them to further stigmatization or require them to be exposed to the sun to receive support from social services.

We can combat the stigmatization of and discrimination against PWAs through a wide range of actions, including the promotion of positive information about persons with the condition, highlighting role models, and the continuation of awareness-raising campaigns. Publicly condemning all forms of bullying, exclusion, discrimination, and stigmatization against PWAs at every opportunity (including on International Albinism Awareness Day every June 13) would also be impactful.

On the matter of public education, we should ensure sustained and uninterrupted multi-year-long efforts in enlightening the public on albinism. It is necessary to impact relevant information about albinism, including the scientific reasons behind albinism, as well as the human rights of PWAs. Particular attention should be given to rural and remote areas, as well as border communities.
Information regarding PWAs and their rights should be included in training curricula generally, and particularly in the training of specialists in all relevant sectors, including disability, education, health, employment, justice and law enforcement, racial discrimination, diversity, and statistics.

When it comes to policymaking, it is important to ensure full and meaningful participation of PWAs in the design, development, and implementation of all measures concerning them, and in particular national action plans and legislation.

Societies should deliberately seek out and include qualified PWAs in significant government and public offices and continually monitor and evaluate the impact of measures adopted and enact such measures as required

Q: Is there something else you would like to share with the world on International Albinism Awareness Day?

A: I encourage persons with albinism to not let the obstacles stop them from achieving greatness.

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