After discovering that skin checks could mean the difference between life and death for Persons with Albinism (PWA), Tolani Ojuri wants to make them compulsory and affordable. According to a study, skin cancer claims lives of most PWA in their 30s and 40s. This highlights the need for accessible preventive measures and early detection methods.
While his standing as a renowned inclusion advocate and the Lagos State Chairman of the Albinism Association of Nigeria have helped raise public awareness and gathered notable support, there are considerable challenges to address. One significant obstacle is the absence of precise data regarding the population of PWA in Lagos, information that even government agencies lack.
In this exclusive interview, he shared the multitude of challenges that PWA face daily–from the insidious threat of skin cancer to societal discrimination–and the success and setbacks recorded in the journey towards inclusion, improved healthcare and education.
This interview has been edited for clarity and brevity.
Toyeeb Abdulquadri: Can you tell me about your path to becoming a disability inclusion advocate, particularly for individuals with albinism?
Tolani Ojuri: My journey into advocacy began around 15 years ago when I pursued a Master’s degree in Psychology, with a focus on the social aspects of albinism within the context of Nigeria.
Around 2018, a pivotal moment occurred when I visited a General Hospital and met a cheerful PWA with a bandage on his head. I inquired with medical personnel about how we could help him. To my dismay, I was informed that he was living on borrowed time, and there was nothing that could be done. This experience deeply affected me.
Coincidentally, during that same week, the World International Albinism Awareness Day was approaching. A week or two later, I embarked on a media tour sponsored by the Lagos state government, speaking on radio/TV and appearing in newspapers. The program garnered significant attention, particularly from PWA. We discussed the importance of prevention as the key approach.
This experience marked the turning point in my journey, as I recognised that my forte was in raising awareness and engaging with the media. Since then, I have been deeply involved in the disability space, collaborating with various development partners, including the Commonwealth, to advocate for the rights of individuals with disabilities. Since then, I have been engaged in numerous projects aimed at promoting disability inclusion and raising awareness about albinism-related issues.
TA: I’m curious to know if you followed up with the person you met at the hospital or not?
TO: Unfortunately, the guy vanished. And when that happens, the mortality rate is very high. Between January and now, we bury one person every month.
TA: At least one person dies every month. Would you say this is happening because they don’t get the care they need?
TO: Saying they are not getting the care they need would be unfair to the people I’ve been supporting and some stakeholders. One thing with PWA is that exposure to the sun is a “no-no”. And a lot of them get to know very late. It’s not that you stay in the sun this morning and the problem will start at night. Sometimes, it takes 5-20 years to manifest. That’s why PWA are always advised to avoid the sun. If you will need to stay in the sun, you must use a sunblock which the SPF level is really high.
That’s why we focus more on awareness and let PWA know that they shouldn’t go out in the sun and use their sunscreen constantly if the need arises. However, we still find a lot of them still going around in the sun with no cap, no umbrella or anything to protect them from the sun, whereas they claim they are okay. And when the problem starts, it affects everybody around them.
If a person is down with skin cancer, the person will be smelling, nobody around will bear it. if they want to raise funds too, they go to churches, mosques, markets and also request from their family members. So, everybody gets affected. In the area of prevention, we tell people to stop them on the road and tell them. By the time 10-20 people tell them, they will know all eyes are on them.
Even if it’s difficult to go every week because of business or what have you, we advise them to go for a skin check once every 90 days.
TA: What are some of the most pressing challenges that people with albinism face in Nigeria, and how has your organization addressed these challenges?
TO: In the area of health, skin cancer is the major one because our skin doesn’t have protective coverage (melanin) that protects us from the sun’s harmful rays. Another health challenge is low vision. But we’ve observed that early intervention greatly improves children’s outcomes as they grow. For instance, thanks to my mother’s medical background, I began wearing glasses at the age of 4. Now, as an adult, I can engage in various activities– I ride a bicycle and I’m an avid driver.
Back to the challenges, discrimination and stereotypes at work are still there. That’s why we keep pushing on the area of awareness, meeting employers, and having consultative forums. Through these, we get to talk to stakeholders and make them understand that the relationship with any PWA shouldn’t be a pity-party. We have PWA who are well-read and doing well in business. Don’t look at us from the form of our skin, look at us from what we are bringing to the table. It’s for this reason that we often showcase PWA who are doing well.
For example, when I inquire about teaching job openings for some of our members, I inform them that I’m bringing qualified graduates in education to support the system.
Regarding challenges, I don’t advocate for sympathy; instead, I believe in equal opportunities and inclusion. Let’s bridge the gap. Employers should provide a reasonable working environment, like adjusting lighting because our eyes are sensitive to bright lights.
TA: How do you think your advocacy efforts contributed to shifting perspectives and breaking the barriers?
TO: Now, there’s attention to the issues that PWA face because we have met/partnered with a lot of stakeholders in key Ministries. Now, Lagos state has a programme every year whereby they bring together children with albinism from all schools in Lagos to discuss pressing issues. Now the counselors in each of those schools are aware and have been trained.
In the area of advocacy, we’ve brought it into their consciousness that these children can attain any level of education, that they can do any job as long as it doesn’t expose them to certain problems.
With proper assistive devices, PWA can function in the workplace. For example, we let them know that PowerPoint presentations should be in Type 3 or 4 to carry PWA along. We have raised awareness especially in the education sector.
The Lagos State Special People’s Bill was passed into law in 2011, making it mandatory for employers in Lagos to employ at least one percent of Persons with Disabilities (PWDs) in their workforce. This is the awareness we share with the people we engage with. As the compliance deadline approaches for this law in 2024, our awareness efforts continue to encourage greater inclusion.
TA: Do you believe that existing laws are sufficient to address the issues, or do we require additional legislation?
TO: As far as I’m concerned, we’ve enough laws. Following through is the problem. We’ve just scratched the surface, particularly when it comes to ensuring accessibility to public facilities. If you do your research, you will find out that government facilities often fall short in this regard.
TA: I noticed in one of your interviews that you’ve collaborated with international organizations, including EU and UN agencies. Could you please provide more information about the inclusion projects you’ve been involved in with these agencies?
TO: During COVID-19, we were part of the Lagos state team that worked with the UN on Social Protection policy for Lagos state. We interacted with stakeholders on how PWDs who are teachers can be placed in schools that are close to their home. During that project, we got some PWA employed as teachers to schools near their homes. This is to protect them from working all over the place in the sun.
TA: Can you share success stories or examples of PWAs who have overcome challenges and achieved their goals as a result of your efforts?
TO: As of the first quarter of this year, we have eight full-blown cancer cases on our list. We try to raise funds for some of them. Four of them have had their chemo and radiotherapy done. We asked for funds from the government, but they said they don’t have money available. In cases like this, we raise funds from our members, corporate bodies, or crowdfunding (go-fund me).
TA: In what ways do you collaborate with other organizations or government agencies to promote disability inclusion and address the needs of PWAs in Lagos State and beyond?
TO: The Lagos State Office for Disability Affairs (LASODA) is the agency of government responsible for interfacing between the government and PWDs in Lagos. But that is not completely in place.
With the challenges we have faced, I have learnt that you don’t give everything to the government. You only collaborate with them wherever they are ready to support. However, we always let them know what we are doing from time to time. So far, we have partnered with LAMATA, NURTW, TESCOM, SUBEB, Ministry of Health and LASUTH. Basically, education and health are what we focus on and we’re talking with them regularly.
TA: Looking forward, what are your future goals and projects and how can the community or interested individuals support your efforts?
TO: When I became the Chairman, there was limited organizational structure in place. One of our key initiatives was the establishment of a database template. By year-end, we aim to have comprehensive data on the number and locations of PWA in Lagos. Nobody has the exact number of PWA in Lagos. If we don’t know how many we’re, how do we plan? Even the government agencies don’t have.
When we have a robust database, then we will strengthen our relationship with LASUTH. We would probably provide LASUTH with more resources. At the moment, we have a pre-cancer screening service. When a patient goes there, they go through the screening which is N25,000. So, we will focus more on prevention. When people go for their skin checks they get things like a sunscreen and, if need be, a pre-cancer screening test.
We’re also working towards a system where, if a member is in our database but misses their scheduled appointment within 90 days, our system will promptly flag them to indicate that they need to undergo a skin check. It won’t be a matter of choice anymore; we want to make it compulsory for everybody to have their skin checked.
Then, we now move from there to get NGOs that can provide glasses. We have one that provides for children with Albinism from 0-18yrs old. We want to get more NGOs who can support adults as well.
Within the next five years, we also plan to have a system that sends them weather reports as text to tell them how sunny it is going to be and if it’s safe to go out.
Another thing is that we want to get scholarships and business support for PWA. We want them to take jobs and businesses that protect them from the intensive sun.
TA: Are there any upcoming events, campaigns, or initiatives that you’d like to share with our audience to raise awareness about albinism and disability inclusion?
TO: In the last quarter of this year, we plan to do a massive media campaign and grassroot campaign– go to motor parks, places of worship, market and raise awareness. We urge people to join us on this in October, November and December.
TA: Anything else you want to tell our audience?
TO: We are still looking for funds for our cancer patients. We have some very, very sad cases. We have the case of a patient that we’re trying to raise a hundred thousand dollars for. We have two cases that need to go for chemo and radiotherapy. If we can get our cancer patients off our list by the end of the year, we will focus more on prevention. I pray that well-meaning Nigeria will come to our aid.