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www.lovethisskin.org is live!

Hi family, 

We have officially moved to www.lovethisskin.org - we are excited to keep sharing and growing with you. Thank you for all your support over the years

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In Conversation: Puleng Molebatsi

August is Womxn’s month in South Africa and to celebrate the power of womxn, our latest feature is South African actress, presenter, activist and all-round powerhouse Puleng Molebatsi. Puleng is a seasoned South African media practitioner with over 10 years experience!

Tell us about yourself and the people that have influenced you growing up.

I was born and raised in a small town called Thabanchu in the Free State. My mom passed on when I was 14 years old. I was then looked after by aunties and school teachers who ensured that I got what I needed in order to do well in school. People who played a vital role in my upbringing are my English teacher Alice Leserwane, my late mom Matshediso Molebatsi and adopted mother Carolyn Carew

Share a bit about the Albinism Report, what is your intention with the show?

I present and produce a current affairs show called the albinism report on channel Africa, The show focuses on all the issues that affect people with albinism, the aim is to shift negative perception on albinism and introduce an enlightened narrative. To get people with albinism talking about ways to tackle challenges they face.

How has the work you do as a media practitioner - particularly the focus you have on issues around albinism in Africa – changed/challenged you?

I have learned to not live in a vacuum, to understand the stories of other people with albinism and how I can best be a mouth piece to those who still don’t have a voice. I have learned to stop complaining about what is wrong and start implementing ways to correct the wrong.

You’ve spoken a lot about the importance of representation of people with albinism in the media industry, what has been your experience as a practitioner, and in what ways do you think the issue of misrepresentation can be tackled?

The media has always portrayed people with albinism as the other. The misrepresentation of people with albinism has always been there in films, music videos and other media platforms. People with albinism were portrayed as aliens, ugly, with a low self-esteem and outcasts in society, this is still continuing in mainstream media because the roles created for people with albinism are still not portrayed in a human way.

The first step would be for every person in the media space to educate themselves about the condition and start introducing characters that are like us. Vibrant, intelligent, beautiful sexy… I can go on and on but I think you get the picture.

What major issues do you believe we still need to tackle on the continent, for women with albinism?

Empowerment of people with albinism is vital. Its time that women with albinism find their own voice and use it to fight the stigma attachment in Africa

What have your guests with albinism on your show, and your interaction with the public, taught you about the condition and people’s perceptions?

That people fight multiple battles, and some of those battles are internal. We all have a common thread but individuals fight different battles.

What are you hoping young people with albinism take away from your story?

We are who we’ve been waiting for. The change we are seeking for begins with us.

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In Conversation: Perpetua Senkoro

In celebration of #InternationalAlbinismAwarenessDay and Youth month in South Africa, we are proud to present the following conversation with Perpetua Senkoro; a young person doing amazing work in albinism advocacy. May we all learn from her passion, and in our own way do work that is meaningful to us. 

Tell us a bit about yourself; your family and community, and the experience of growing up with albinism within that space?

I was born in Mwanza, one of the regions bordering Lake Victoria, where I spent my early childhood. Kindergarten was not that complex. I was free to improvise anyhow in class in such a way that my visual impairment did not feel weird. The name-calling I experienced from people around me because I used to walk to school made me start to wonder about my condition.

I never experienced problems with my family, considering the fact that both of my siblings also have albinism though our parents don’t. In fact, my mom always made sure that we wear protective clothing and stayed out of the sun, while my dad always bought us books, so we had a habit of reading a lot, which was extremely helpful especially in primary school where our visual impairment was a great challenge.

I remember hating the fact that I would go in and find notes or test questions on the blackboard but I couldn’t see a thing. Sometimes no one wanted to read for me, some of my classmates teased me each time I tilted my head trying to read what was written on the board. I hated it when I had to pretend to write and when the teacher collected our exercise books for marking mine was empty. I hated Maths because teaching was done on the blackboard where I could not read. I hated my walks to school and back home because I would get teased all the way. I was a loner and I hated school altogether. Primary school to be precise, but weird enough, in mid-term and annual exams (which were printed on paper) I always came first, second or third of my class.

I used to be ashamed of my condition. Every time I got teased I grew even more ashamed. There was a time I wished to be locked up somewhere away from everything. As I grew into my teens, I became more insecure with myself, I remember, each time I made a new friend, I would say to them, “you know I have lots of spots on my skin eey” in a way to see whether they’ll still be friends with me or not. However, as I grew older, that gradually went away, and when I began volunteering at Under The Same Sun, an NGO advocating for rights of people with albinism, things changed completely. For the first time, I understood what albinism is, and I met people like me who faced what I have but succeeded anyway, I met people like me who encountered terrifying experiences that made me thankful and appreciative of the good that I was blessed with. I graduated university with a law degree and am now an employee of this NGO

What is Under the Same Sun and what is your role within the organization?

Under The Same Sun is a non-governmental organization advocating for rights and welfare of people with albinism. Our headquarters are in Surrey Canada, we operate via our offices in Tanzania Dar-es-salaam and Mwanza.

In the organization, I am an advocacy and human rights officer mainly responsible for reporting on the situation of human rights of people with albinism in different African countries to international human rights platforms including the United Nations and African Union. This role goes hand in hand with other activities related to advocacy and public awareness raising.

You use your voice to raise awareness and educate people about albinism; how do you think this work has changed you? What has been the most challenging aspect of this work?

My work mostly involves lobbying which requires great social skills. Most of the time I meet people more educated, exposed, of different nationalities and most times of very high status. This was a great challenge considering I’ve never been that much of a social person, but now I’m already used to it.

I have learned to accept and love myself. Better yet, I am full of confidence and morale to reach my full potential to achieve greater goals. I’m in no way ashamed of myself, and I no longer feel obliged to justify my flaws to anyone. To make it simple, my albinism no longer hurts my feelings.

Where do you think we stand on defending the rights of PWA on the continent, what still needs to change?

Most people with albinism are uneducated hence lack proper advocacy approaches as well as the drive to do this work for the sake of bringing forth societal change, instead they do it merely for earning a living. Most albinism societies in the continent are struggling with this issue so much that even potential donors are afraid to fund them due to poor financial management and accountability. In the end, those who suffer the most are the people with albinism at grassroots’ level. This needs to change if we are to move forward and do better.

What are you hoping other young people with albinism take away from your story?

I wish for them to learn that its ok to have albinism. That if they love themselves, accept themselves and become confident enough to show their full potential. We will get more graduates, leaders and many-many professionals with albinism and this will not only elevate our place in the society, it will also eliminate the belief that we are abnormal and useless.

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In Conversation: Regina Mary Ndlovu

We are thrilled to share our latest feature: South African actress and motivational speaker, Regina May Ndlovu. We chat with her about her work, the #ClimbForAlbinism campaign and the challenges of having albinism. 

Who is ReginaMary? Tell us a bit about yourself and the people that have influenced you growing up.

I am a fun, kind, sweet, emotional, fairy-tale dreamer. I am an actress, activist, motivational speaker and I’ve been able to realize all of this because of God. I have been influenced by sound and images; for a young woman who was not been able to read and write for a very long time due to albinism and the discrimination as a child, I started seeking answers from life and God, I asked  how is there a God but I’m going through all of this? I one day lost it and said to Him; how dare you create me, how will I be able to get to know you if I can’t read the Bible? You took away my ability to read. You are the reason I am all this. A day after this my cousin gave me a gift; an audio Bible, so I was able to listen - and this felt like a sign that life isn’t always one way, I cannot read or write, but I can hear. I started using movies and subtitles to teach myself, I used sound and music videos, I listened to motivational speakers and to people like Maya Angelou who was my greatest influence because I used to be ashamed to stand and tell people I was raped, molested and kidnapped, but listening to her story gave me the courage to share mine.

I was also influenced by the movie ‘Long Walk to Freedom’. My inability to read and write meant I couldn’t participate in class discussions around our country’s history because a lot had to be read -  but watching the movie gave me a new perspective. Looking at my past; being discriminated, being raped, being kidnapped, being molested, being locked up in a mental institution attempting 11 suicides - I thought, “Oh my God, I need people to care for me, I need them to love me because…because…”, but I realized that our history shows us that we are a product of teaching what love is about.

I was also influenced by the media; I’ve always wanted to be an actress but I was told to my face that there are no albinos in the industry, they didn’t even know the correct word to use. But seeing other young women with albinism in the media industry doing amazing things inspired me a lot.

What inspired you to do the work you do, as a motivational speaker, actress and activist, and what has this journey taught you?

What has motivated me are all the things I’ve been through. I was raped when I was 8 years old, then molested by my teacher at age 12, then I couldn’t read and write because my primary school teacher said I didn’t belong in a classroom. I had low self-esteem and I was constantly told to my face that I am a waste of time. This journey became all-consuming. I focused so much on what I wasn’t until I realized it’s all about how I decide my story should end.

Tell us a bit about the #ClimbForAlbinism initiative you’re a part of, what is the message you’re trying to send out?

#ClimbForAlbinism is 6 women with albinism from 6 different countries taking this journey (summit Mount Kilimanjaro) to express how we have overcome the struggles we’ve gone through and amplify our voices using this platform. When I saw the poster for the campaign, I saw a vision of persons with albinism being unified, being independent, to know they are capable. Albinism – for a long time - has not been reflected in a positive light, this campaign allows us to do that.

What are you hoping young people with albinism take away from your story?

I hope they go out there and use their imaginations. I hope they look at what other people who inspire them are doing and take from that. In what ways are you hoping to change the world? Be confident in who you are, ask for any assistance you need (especially accommodation related to your visual impairment). Know that you are capable. Be grateful for the life you have, and know how important it is that you are here.

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In Conversation: Thubelihle Sibonakaliso Mpisi

Happy new month Love, This Skin Family! 

Our April feature is South African lawyer and activist Thubelihle Sibonakaliso Mpisi; this 25 year old currently works in the political domain but previously worked for the biggest intellectual property law firm in Africa: Adams and Adams Attorneys. He speaks to us about his mother’s influence, his views on albinism awareness and his experience of having albinism.

Photo: George Lewis

Tell us a bit about yourself; the place(s) you call home, and the people that have influenced you growing up

My name is Thubelihle Sibonakaliso Mpisi. ‘Thubelihle’ was given to me by my grandmother – who is still alive – and means good opportunity. The name ‘Sibonakaliso’ is probably the more interesting name in this narrative because it means prophesy; My mother’s sister Thandeka Mpisi had a dream some weeks before I was born, and in this dream she sees this white child sitting on the sofa, and of course at the time she tells the dream to everybody in the house and they don’t really understand what it means. Later I was born and lo and behold I am “white”, so they say that that dream was me and therefore called me Sibonakaliso. I was raised in Port Shepstone on the south coast of KwaZulu Natal, South Africa - that is where I was born on the 17th of February 1993; I matriculated there, I’ve basically spent most of my life there - after that I moved to Pretoria where I studied for my LLB. I’ve also studied in other parts of the world including doing some short courses in the USA in Washington DC as well as in Europe.

The first person that influenced me growing up is my mother, she has played a very integral role in ensuring that I have the kind of confidence I need to take on life, she basically is my friend - and we’ve always had the kind of interaction that can stimulate thinking from a very early age. I consider her to be a very wise person because she has not only instilled in me the confidence I need but has encouraged me to think critically about everything I interact with so I can be intellectually independent and not unconsciously have other people’s views imposed on me, especially where those views don’t further my own interests, and I really appreciate that about her. The second person that played a very integral role and influenced me, in fact two people I went to church with whom I consider very close, they are like my fathers; Pastor Benedict Mbatha and former Magistrate Timothy Siyabonga Ngesi. I got along very well with both of them, they played an integral role within the context of spirituality as they enabled me to tap into the element of feeling the kind of worth I needed as a person. They also gave me an outlook on life in general because they were way older than me, they were probably old enough to be my grandparents, but we had the father/son - and in fact brother - relationship which we still share. I’d say Mr Mbatha espoused more to my spiritual side and Magistrate Ngesi espoused more to my intellectual and academic side because of the background he had in law.

As someone who has spoken widely about being a South African with albinism, and the importance of not allowing stereotypes to define you; do you feel we’ve made progress on how PWA are viewed in South African communities, and in particular by the media?

Let me divide this question into two parts, the first is what our understanding of progress is, and the second part is the role of media. With the role of media; I think we must gage the role of media to the degree that it maintains stereotypes about people with albinism; at times without understanding that it is doing that. For instance, in Africa people are poor, that’s a reality but when you project that poverty in a way that seems to suggest there’s no other narrative - that is where I feel the arbitrariness of media becomes relevant. The point I want to make is; media must project what society wants it to project, and what society considers an ideal. So from my perspective, at the centre of this discussion is: it becomes a problem when biological features – of which people didn’t opt for by the way, because that’s how they were just created – become the basis upon which people can be accepted or rejected from a social setup such as media.

The second thing I want to point out relates to stereotypes, and whether we’ve made progress in combating those stereotypes: well again, this becomes problematic for me because we need to gage how we measure this progress, do we say there’s progress because there’s less killings of people with albinism? Do we say there’s progress because there’s more acceptance of PWA in either “white” or “black” communities? How do we measure this progress? I think we must not measure progress so much by the level of awareness people have – yes I agree there’s a need for that – but we must measure it by the degree to which we can instil the kind of confidence that is needed by people with albinism to take their rightful place in society. If we gage our programmes like that, what we’ll be achieving at least is that we’ll be instilling the kind of attitudes in people that will be independent of the reaction of society. Our programmes should not so much be anchored on making society understand us (as people with albinism), but rather enabling us to understand ourselves and our potential. I’m not suggesting awareness is not needed, because you can have all the confidence you need but if you’re going to operate in a society that does not understand you and plays a huge role in exterminating you, what use is there to be confident?  But more than awareness we need to build confidence to withstand these stereotypes perpetuating insofar as we are concerned.

How do you practically manage the day-to-day demands of being a lawyer and being visually impaired, what are some tricks that have worked best for you?

I think our levels of (visual) impairment differ from one person to the other. For instance, I can see something very far but I have trouble seeing small font, this is not something akin to just me, but even people without albinism. I also have a Driver’s licence, I can see when I’m driving. I think this has something to do with the fact that when I was younger, my mother paid particular attention to eyecare, I’d be lying if I said my visual impairment has ever been a dramatic problem for me.

How do I manage the day-to-day demand of being a lawyer? So I used to work for one of the biggest intellectual property law firms in Africa: Adams and Adams Attorneys. One of the weirdest things that would happen is interaction with clients where you’ll be talking to someone over the phone for a while; they know you speak IsiZulu and your name is Thubelihle, and the day you have to meet them it feels weird, and they kind of say “I thought you’d be non-white/thought you’d be black”. But in all honesty, the challenges I face as a lawyer are to some degree the same challenges other people face. But to a greater degree it’s issues relating to interaction and understanding that I find myself dealing with mostly, and how I manage these is I always stand my ground, people will try to intimidate you and try to make you feel uncomfortable, I’m one of those people who doesn’t care, so having such stereotypes and assumptions about me does not have any harm on me. For me, it is less about how I manage the ‘day-to-day demands’ but rather how each day becomes a stepping stone through my albinism.

Have you ever felt the role of educator - wrt albinism - too imposed on you in any situation, and how do you respond to such an imposition? Or do you feel as PWA, we should play the role of educating others as much as we can?

In all honesty, I’ve never felt there’s been an imposition, but I do think there’s a need to educate people, but the question of who we educate then becomes central: are we educating people with or without albinism? As I’ve said, from my perspective it would be people with albinism as they are the people who society has stripped of their dignity and therefore must be the people to be equipped to deal with the challenges. There’s no use in saying people must accept you when you have not come to complete acceptance of yourself - in fact - people can only accept you to the degree you’ve accepted yourself; you can only demand as much love as you have for yourself. This is why I say any educational programme must start within the constituency of people with albinism.

What are you hoping young people with albinism take away from your story?

I hope they take away the fact that they have the requisite ability to be and do anything they want, without fearing that their appearance will be used as a hindrance or basis upon which they’ll be excluded. But what I hope they understand more is that sometimes we empower people to take away from us what is rightfully ours, we enable the views and perceptions others have of us to take space in our minds. And at times our reactions then are informed not by our own understanding of ourselves but by the perceptions that have been imposed on us. Whatever decisions we make should flow from our own sense of empowerment, from our own sense of victory and from our own point of psychology.

Photo: Thato Dube

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In Conversation: Delicia De Vos

Happy new month LTS Family!

Our March feature is a disability unit administrator at the Cape Peninsula University of Technology; she’s also an MPhil (Disability Studies) student at the University of Cape Town. Delicia speaks to us about having albinism, her work and family.

Tell us a bit about where/how you grew up, and the type of environment you grew up in

I was born in a little town in Namibia called Rehoboth. For the first four years of my life I lived with my mom, my sister and our grandparents.

When I was five I waved goodbye to mom while she was standing on the platform at a train station in Namibia. I saw her silhouette get smaller as the train moved further away from the station. I didn’t know that I would only see her again after six months so I didn’t cry or fuss even though I was surrounded by strangers. It took three days before we reached Cape Town where I was sent to attend a special school for blind and partially sighted children. My first day was very traumatic; I was a new child at the school, all the other children formed a circle around me and started to touch me (to get to know me). All those hands touching me at the same time; it freaked me out and I cried for a week.

Our lives in hostel were quite regimented. We had set times for when to wake up, eat, go to school and when to sleep. It was the same thing every day for six months at a time and in my case, for thirteen years. I shared a dormitory with 19 other little girls and we shared ablution facilities with 20 slightly older girls. At the hostel we had a few housemothers who cared for and disciplined us, there were two medical sisters for administering medications for when we got ill, then there were two teams of three or four ladies who prepared our meals and another four who did our washing once a week. We were not allowed to do anything or go anywhere on our own. All we did was go to school, go to church (which was on the grounds), do some extramural activities (athletics, netball, goalball) and listen to music and stories on the radio.  Sometimes we had organized outings but I discovered later on that this was not nearly enough. I grew up very sheltered at school and only went home to visit my family twice a year. Every time I went home, it took me a while to get used to everyone and just as I felt like I fitted in, I had to leave again. It was tough saying goodbye every time but at the same time, I was looking forward to going back to school because I had friends there.

What inspired your decision to work in disability Advocacy?

At first, I just needed a job away from what I was doing before. So I wouldn’t say that working in this field was a conscious decision on my part, it just worked out this way. I believe that it was in God’s plan because I never saw myself as an advocate for anybody, but here I am and I love what I do.

What does your day-to-day work entail?

I do talks in the different faculties where I speak to new students about disabilities and about the services that we provide. I also assist students with disabilities in all 8 CPUT campuses with bursary applications, residence placements and academic support. I also do exam concessions, meetings with lecturers and other staff who work with disabled students.

How have you found working with university students with disabilities and what have been the most challenging aspects of your work?

My work is really rewarding. I get to see the transformation of young people who - when they first start - rely heavily on others to speak for them and by the time they graduate; leave with confidence and pride. Their self-esteem and independence grow, and I’m proud I play a role in that.

To answer the second part of your question, I would have to say that there are a number of things that make my work difficult. The most important one I would have to say, is the fact that the decision and policy makers know nothing about disability and how it affects peoples’ lives and therefore always make decisions without thinking how it would affect the people living with disabilities. Sometimes it is also difficult to live up to the expectations of people with disabilities because they often expect you (because of the office you hold) to perform miracles and get them what they want immediately which in most cases, is impossible. Then there are those times when you can see the need and you really want to help but your hands are tied because of one or other policy.

In talking about your experience with having albinism and trying to educate others, what have you found people struggle to understand?

There seems to be a general misconception that all people with Albinism are related. I also find that many people are not aware that people with Albinism have poor eyesight.

What are you hoping people take away from your story and your work?

I don’t know if what I have shared here would be considered inspiring but I am doing a job that I love, I am healthy, I’ve been married for 18 years now, I am a mother of two beautiful children and I am a student. My point is this, when I was young, I never thought I would have any of these things and getting to this point was not easy but the journey was worth it.

What message would you like to leave for young people with albinism?

Love and accept yourself. The sooner the better. It took me many years to get to the point where I can look at myself in the mirror and think that I am beautiful and sexy. Once you have accepted yourself, what other people say or do to you, becomes less hurtful. Do not give other people the power to belittle your existence or make you feel less than. You are beautiful and perfect, just the way God intended you to be. Grab every opportunity to educate yourself and to improve your life and of those around you. It is not going to be easy so surround yourself with people who love and respect you for the person you are and use that love to draw strength from on the days when you feel defeated. Be aware that there is a lot of ignorance out there so be patient and kind with those people. This is something I still have to remind myself to do.

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In Conversation: Thando Hopa

Dear Love, This Skin Family,

Thank you for reading, sharing and taking our conversations beyond this platform. We’re looking forward to hearing your feedback, but particularly what you’ve taken away from these conversations

We’re so honoured to bring you our February feature: Thando Hopa

Thando is a South African Activist, Lawyer and Artist. She is the first black South African to feature in the Pirelli Calendar (2018). She is currently on sabbatical from her legal career to focus on her other interests. She talks to us about having albinism, public perception and the intersectionality of her identity

Photo: Nick Boulton

Do you remember the particular moment you realized your “difference” from others around you? 

I usually date it back to the first day of primary school when kids moved away from me and didn’t want to sit next to me. The name-calling started and it’s the most obvious issue, but what fuelled the realization was deeper than that. I think the realization is something that grew with time; it was a series of experiences that made me feel separate from the so-called “normal” kids. The funny thing is; i wasn’t conscious of my actions until they were pointed out as strange or abnormal. For instance: kids asked me why my eyes move around, why I bumped into things, why my head moved involuntarily, why I squint when I went out into the sun and so on. So many “whys” that my little self didn’t have the answers to. I didn’t just feel different, I felt faulty. So it’s not really something that got realized in a moment, it was something that accumulated through a series of experiences.

How do you manage the day-to-day demands of your life with being partially sighted, and what has helped most for you?

I sometimes use visual aids for reading. I tend to use a tablet instead of a phone because it’s easier to see everything on it. I also learned to communicate my needs in terms of skin and eyesight. If I’m expected to work, provide a service or assistance, I don’t allow myself to struggle unnecessarily, I communicate the assistance I require because my safety, well being and comfort are important to me.

There’s often a struggle between being vulnerable in talking about one’s experience with having albinism – and protecting yourself, have you ever struggled with this and how have you managed to balance between the two?

It’s a complicated issue. I haven’t figured out how to do it exactly right. The thing about identity politics is that they can have a tyrannical nature. I adore my albinism but I didn’t want to feel imprisoned by it. I wanted to discuss albinism without it being an all-consuming part of my multifaceted identity.

I used to feel frustrated by the narrow focus of my albinism in media, but I was not going to let that make me denounce or resent it.  It took some time to realize that my story touched many people; those who have albinism and those who don’t. Although my condition is rare, my story and life experience carry universal messages and useful insight. So instead of seeing my difference as something that made me feel small, I saw it as something that helped me expand and grow. I chose to use my difference as a tool to discuss issues around beauty, women, diversity, race, intersectionality, representation and other issues. And this is empowering. 

Another thing is, I don’t share something I feel sensitive about; no one is entitled to my vulnerability. I only share experiences I’m at peace with, by choice not by expectation. This took time to get a hang of. Taking control of my story allows me to give out my vulnerability from a place of strength; this is also empowering. 

Do you have anyone in your family/community/role models of people with the condition, how has this experience been? 

I knew Mam Nomasonto (founder of the Albinism Society of South Africa) as a child. My mother actually did a documentary on her and I played the role of little Nomasonto. Years passed before seeing her again, I had already started modeling by then. I grew to appreciate and value her work and her character. She set the groundwork to ensure that people with albinism have a greater level of social mobility. 

To parents of children with the condition, what would you say?

Place yourself in a position to parent a child with special needs. Don’t go through a silent struggle; fear thrives on ignorance. Go to organizations, speak to doctors, be active in your child’s education and use other information tools to understand your child better.  Learn, explore, affirm, support and love every bit of that child, all of this goes a long way.  

You’ve spoken many times about the importance of representation and being able to see our stories told, what are you hoping people take away from your story?

It’s too early in my life for me to answer that question. I’m still crafting my story. But I do hope that my deeds become useful to humanity. I remember reading a Thomas Sankara quote some years back, he said  “I want people to remember me as someone whose life has been helpful to humanity”. This affected me a lot and I share his sentiments. 

Photo: Nathan Hoeffel, New York Model Management

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In Conversation: Destiny Birdsong

We are beyond excited and honoured to start 2018 talking to acclaimed American poet, essayist and editor; Destiny Birdsong. Destiny has won the Academy of American Poets Prize, Naugatuck River Review’s 2016 Poetry Contest, and Meridian’s 2017 “Borders” Contest in Poetry. She’s had fellowships from Cave Canem and Callaloo among others.

She openly speaks to us about her experience with albinism, her family, writing out her fears and her hopes for young people with albinism

Photo: Hunter Armistead. Makeup: LaRisa Jones

We work in African communities and mostly have an African audience - Your background is different from that of our readers, tell us a bit about your community and how you grew up.

I grew up in the American South—Shreveport, Louisiana, to be exact. It’s not a big city, but it’s also not a small town. I haven’t lived there in many years, but it’s a place I love deeply. There’s something about the miles and miles of flat land, the pine trees, and all the waterways that will forever be a part of my concept of home, even though there are other places that share that moniker for me. Shreveport is an interesting place; it’s not in the part of the state most heavily populated by French-speaking Acadians or French Creoles (whose cultures Louisiana is most famous for), but it is definitely influenced by them in terms of food and other forms of celebration (like Mardi Gras), as well as in how the people around me thought about race and color. I grew up in an African American family where people were a range of colors, and my albinism never made me feel out of place in that regard. There is no general phenotype for us; I was just one color of many. So many of my family members’ nicknames are based on appearance, and particularly color. I have an uncle called “Fat Ear,” another called “Black Boy,” and yet another called “Red Boy.” When I was a baby, my uncles nicknamed me “Honey,” which they thought matched the color of my hair. I spend most of my life away from my family, and something in me starts to heal from the world when I walk into a room and my Uncle Carlos yells: “Honey Bunny!” I love my family for taking one look at me and naming me after something carefully made and harvested, something precious and sweet.

Of course, people outside the safe space of my family still said and did mean things during my childhood, but I was rarely—if ever—made to feel “less black” than others. And, while I was certainly made fun of, I felt physically safe in most of my environments. I do have one distinct memory of being bullied, however, and it was in pre-school. I’ve worn glasses since I was three years old, and this girl who had been hassling me on the playground one day smacked them off. Apparently, that was the last straw: somehow, I got a hold of her finger and bit down to the bone. She was rushed to the emergency room, and I was sent home. I love that story, especially since it’s the one time I got in trouble in school, but didn’t get in trouble at home. My mother knew the girl had been picking on me, and she understood why I retaliated. My mother never condoned violence, but she did give me space to stand up for myself, and she and the rest of my family made me feel like I had the right to do so. I also use this story to remind myself of something that I apparently knew then, but sometimes forget now: I matter, and no one has the right to treat me poorly simply because they feel like they can.

Do you remember when you initially became aware of your hyper-visibility?

There are two distinct moments that come to mind. The first happened when I was perhaps three or four years old, and I overheard my mother tell her best friend that, when she was at the grocery store, shew saw two children who looked like me. I wasn’t there with her, but I remember understanding that, when she said that, she also meant that we didn’t look like everyone else. The other time was a bit later—five or so—when I drew a picture of an imaginary friend named “Samantha.” Samantha had yellow hair and wore glasses, and my mother was touched, but also a little tickled; she showed that picture to everyone she knew. Although she understood better than I did at the time, we both knew who Samantha looked like, and why: I needed to see someone else who looked like me.

How have you navigated your albinism in your writing, what are some issues/aspects related to having the condition, feature most in your work?

This is a tough one, because, like everyone else (I imagine), this condition is one part of my identity, but doesn’t encapsulate the totality of my experience. I write about a number of things: love, sexual trauma, mental and physical health/illness, my family, my belief systems—so, whenever any of those things comes to the page, I let it come. I’m not sure if I ever developed a strategy for navigation. I do think, however, that in recent years, I’ve been more forthcoming about my fears and insecurities in my work, and albinism is certainly a part of that conversation, so I write about it more freely now. But, as I was recently telling a friend, I don’t come to the page with intentions so much as I come with questions, and if I am interrogating something about my experience with albinism and I feel like writing it out, then I write it out.

Oh! Ok, so I do have a caveat. I recently started writing fiction, and I deliberately made my main character a woman living with albinism. My decision was based on a few things. First, my best friend writes urban fiction, and we once had a conversation about how some writers in the genre create heroines who are cookie-cutter tropes: fair-skinned, long-haired, thin—very traditionally beautiful by some cultural standards. As such, these characters easily attract the interest of lovers and they are the darlings of whatever space they inhabit. I can’t speak to the motives of those writers, because I don’t know them or live inside their heads, but my first thoughts were: if these writers create such characters because they believe that a specific kind of beauty is more palatable for readers, and more believable, then that’s unfortunate for us as the audience, but also for the writers themselves (especially if they too don’t fit into that paradigm). There is a certain kind of trauma in never seeing yourself depicted as beautiful anywhere, not even in your own work. So, when I started writing fiction, I made a decision that my narrator would have albinism, and she would be desirable. She’s also really regular-degular (shout-out to Cardi B): she has no superpowers aside from code-switching and humor. I wanted her to be unique, but also just a person—someone you could imagine being friends with and commiserating with and understanding. I rarely see people with albinism depicted as such anywhere. And, of course, since I’m a hopeless romantic, her love interest falls in love with her. Well, eventually—I haven’t written that part yet.

There’s often a struggle between being vulnerable in talking about one’s experience with having albinism, and protecting yourself; how have you balanced being open and willing to educate others, and not feeling too exposed?

I practice one rule in this regard: people can ask me anything, but I reserve the right to refuse to answer. That’s my general rule about most things, and I try to offer that to others whenever I ask them questions about any subject I perceive as sensitive. I think that, as relational beings, we have all, at some point or another, fallen into the trap of assuming that, because we know a person who is privy to a particular experience, then they are conveniently available to provide the narrative of that experience for us. I’m certainly guilty of having done it in the past. However, I’ve learned that I don’t have the right to anyone’s body of knowledge, and they don’t have any right to mine if I don’t want to make it available to them. There are other ways to learn a thing, and to be informed.

There are some people who feel PWA should always self-advocate, what’s your view on this? Should we always carry the responsibility to help educate others?

Absolutely not. For instance, in public spaces, I often get the question: “Are you related to [insert the name of some other person they know who has albinism]?” Sometimes, I want to say “No, because not all of us are related. This is a complex genetic condition that spans ethnicities, countries, and cultures.” However, that is emotional labor, and I reserve the right not to perform it if I don’t want to. Sometimes, I just want to be doing whatever it is I was doing before I was interrupted: shopping for groceries, dining with friends, or taking a walk in a park. To be called to step out of the normalcy of my life to explain something to a person who perceives my body as abnormal, and thus demands that I explain this to them, is intrusive, and I don’t owe them anything. It can also take a toll on my emotional equanimity—especially if they prolong the conversation with follow-up questions, which they often do, and which are almost always deeply personal. I reserve the right to choose when to subject myself to that.

Do you have anyone in your family/community/role models of people with the condition, how did you find this experience?

No, I didn’t, and I was about to say “unfortunately,” but that’s a difficult thing to gauge in hindsight. I also don’t want to detract from the legacy of the people who were there. I was raised in a family of talented, innovative, and fiercely loving black women who have taught me a great deal about how to be a woman; and yet, whenever I hear the following words from Lucille Clifton’s “won’t you celebrate with me,” I always think of coming into womanhood as a person with albinism: “i had no model…/what did i see to be except myself?” In Clifton’s words, I made a lot of it up. I just did my research and/or figured it out and/or kept trying until I got what I needed. In so many ways, I am still doing that.

What words would you like to share with parents of children with the condition?

I don’t have any children, so it’s hard for me to tell any parent how to raise theirs, but I can say that it was—and still is—important for the people I love to give me space to feel what I can’t always articulate, and what people without the condition cannot always understand. There is something about my being hypervisible for every moment of my life outside my house that is both exhausting and exhilarating. I have a few other conditions—anxiety, depression, etc.—that sometimes make leaving the house an act of defiance. That is difficult, but I’m quite proud of that, and proud of the person I’ve become in spite of it. It’s important for the people around me to acknowledge that struggle, even when it looks effortless. I have a lovely family and wonderful friends who ask “Why are you so hard on yourself? You’re beautiful!” That’s important for me to hear, but it’s equally important for them to understand that everyone doesn’t see what they see; and, sometimes, I’ll be sad or frustrated by reactions that aren’t as complimentary, or as kind. If you are raising someone with albinism, give all of their feelings space, even as you remind them that one person’s opinion shouldn’t determine how you feel about yourself.

To young people with albinism, what are you hoping they take away, not only from your story, but their own experiences?

This one may take a bit of time to unravel, but trust me, I’m going somewhere! So, I spent most of the early part of this summer outdoors, which is rare for me: I’m a bookworm and not much of an athlete, and, of course, I burn easily (not to mention the fact that I often forget to wear sunscreen). But this summer, I spent four days at an outdoor music festival, and then travelled with my sister to the Bahamas. All around me were tan, thin, beautiful people, and I felt so self-conscious about my skin. This is unkind, but I literally felt apologetic that people had to look at it and spend time around it. Anyway, a few months later, I developed a skin condition that is temporary, but also incredibly uncomfortable, and it drastically changed the appearance of my skin. Fortunately, it’s finally resolving itself, but in the meantime, I’m realizing that I haven’t been loving my skin the way it deserves to be loved. It doesn’t do what everyone else’s skin does, but it is healthy, for which I am fortunate, and it’s beautiful, period. No caveats. I wish I had understood this earlier. I wish I hadn’t internalized so much of everyone else’s opinions about it. I wish I had known that one person’s recoil doesn’t mean I am unsightly or damaged or worthless.  I feel like it’s never too late to change anything and enrich the quality of one’s life, but I wish I hadn’t wasted so much time thinking otherwise.

From their own experiences, I’d say: live your whole life. Albinism is an anomaly that you can’t change, and that may sometimes bring you grief, but don’t try to normalize the rest of your life as consolation for those around you. If you are quirky, if you have interests that differ from people around you, if you think differently from them, hold on to those things. Cherish them. In childhood, they might make you the butt of someone’s joke, or the object of ridicule, but hang on to them. Those opinions change over time, and in adulthood, those traits could make you an artist, a millionaire, an inventor, a world-changer—we won’t know if those parts of you don’t survive. Also, celebrate your albinism. As part of my faith practice, I believe God specifically made me to be myself. He determined my tastes and my cravings, my talents and challenges, my complex desires, and who and what I would come to love. Albinism was part of that plan. It too has its purpose, even though I’m still figuring out what that is. How wonderful it is to think that, years before I would learn to smile or wash my face, God set the bones in it to look like my mother’s and her mother’s, then covered them with a different skin. Then, He set my eye color to match my father’s, though they move differently. I’m no admixture of anything. I am a body curated from my ancestors, but also completely different from them. I can’t say I’m always happy about it, but I can say that, fragile as it often is, my body has survived. So has yours. Every cell in our bodies is narrative and counternarrative, plot and plot twist. We are also vulnerable, but we are also brave enough to be so. That is something worth celebrating.

Photo: Noelle Théard

[lovethisskin]

“Why can’t you see me?”

“Kuthwa uSethu ukujonga nje adlule, akasoze akubulise”/”(If Sethu sees you in public) she looks at you and keeps walking, she’ll never acknowledge you” - A friend said this a few years ago - chuckling - and it has stuck with me since.

Being partially sighted leaves me with a crippling sense of awkwardness and isolation in many social situations. I am independent enough to creatively find my way from place to place, but in many ways, I am blind; and I’m always trying to articulate this better, to not shy away from situations that require that vulnerability and honesty. But I’ve noticed people, even my friends, make many assumptions, and I never really know the right time to safely share my truth. I recognize that I have a responsibility of being honest with people if I want to build healthy relationships.

Many times in a day I’m confronted with situations where my eyesight becomes a barrier to building and maintaining new friendships, for being understood. Many times I ask myself: Do I just randomly blurt out that I can never recognize people unless their a few meters from my face and in my line of sight? Or do I let the awkwardness simmer, and hope people understand? When is the safest time to share my truth with people I’ve just met?

I write this so you can understand me a bit better, and make this conversation easier to approach should we meet.

Here’s to choosing honesty and vulnerability, always.

[lovethisskin]

In Conversation: Ikponwosa “IK” Ero

Hello Love, This Skin family!

We are so proud to bring part two of “In Conversation”. Chatting to people with albinism on life, their upbringing, their aspirations, but mostly on what has inspired their strength and bravery.

We are so honoured to have spoken to Ikponwosa “IK” Ero this week. She is the first UN Independent Expert on Albinism, and has held the office for the past two years!

We spoke to her about her post with the UN, her life, challenges faced by persons with albinism – and what she thinks is our way forward.

Photo Credit: Getty Images

1. Thank you again for being part of this series - Tell us a bit about how you’ve navigated growing up hyper-visible, how did you interpret what you were receiving from people around you, and at what point did you realize your ‘difference’ from others?

Being hyper-visible was not challenging on its own. I did not know I was different until I was around age 4. The impact of the difference was better understood around age 7. I quickly learned that I caused people to react with any or a mixture of mockery, derision, disgust, laughter or amazement.  Initially I was confused and asked my mother to explain why I was different. For all I cared, I no longer wanted to be different – now that I saw the consequences. She gave me some explanation that helped such as “God made you this way so others – who are not God - have no right to question God,” etc. These helped me accept myself on an intellectual level but were weak in the face of taunts from many people.

2. Often, I’ve heard some PWA say a variation of “As much as I can, I want to be treated the same as everyone else, and feel normal, not to always be the centre of attention, or questioned about having albinism” Do you think we should/can escape talking about albinism, as people with the condition? – do we have the inherent responsibility to keep educating others about the condition?

This is a difficult question to give a simple answer to. It largely depends on the person and where they are on their journey with albinism. There was a time when I felt no need to explain myself to people. I was fatigued of the issue defining me and felt that I needed rest from discussing it. However, I have now accepted that I can never take a break from the issue. We are a minority in number so we will likely always surprise a few people for many years to come.  Consequently, I have matured into the role of persistent teacher with a high amount of patience that I never thought was in me.  In the end, I don’t think we have an inherent responsibility to keep teaching but the responsibility might get imposed on you anyway. I eventually chose to accept the imposition; others may not. I cannot decide for them.

3. Your post with the UN – how did it come about and what is your mandate?

The UN human rights council got reports of hundreds of attacks against persons with albinism and ultimately wanted to address it. Creating a mandate is one of the ways that the Council dedicates extra time to an issue that they feel needs their attention but to which they may not have time to tackle directly as a larger body. Consequently someone is assigned to the mandate to do the necessary tasks envisaged and he or she reports to the Council periodically. My mandate is to do several things including tackle the issue of attacks against persons with albinism with an end goal of stopping them completely. This will also include addressing relevant issues such as discrimination, stigma and other root causes of attacks including harmful spiritual and cultural beliefs and practices.

4. Where do you think we stand – particularly on the continent, with changing perceptions about albinism, and fighting for the rights of PWA?

We are making good but slow progress on the continent.  I am optimistic though because most governments are willing to cooperate with my mandate for example. Many citizens have also shown a high amount of resolve to end the attacks. The political and collective will is present generally but converting these to concrete, effective and sustained results remain the challenge. However I can say that we have reason to hope. Records of attacks are reducing in the aggregate even though they continue generally, there are also some investments being made by government, civil society activists and myself in terms of filling gaps in law, raising public awareness and improving self-advocacy among persons with albinism themselves.

5. At a recent conference we attended, you spoke of the difficulty many nations have in classifying albinism (is it a disability or not /What are the implications of policies stating such) What are your thoughts on this?

Disability according to the UN Convention on the Rights of Persons with Disabilities covers long term impairments of a great variety that are not accommodated by the government. Persons with albinism mostly have a vision impairment (albeit to varying degrees). This factor alone means that we ought to enjoy the rights of reasonable accommodation and others covered in the UN Convention on the Rights of Persons with Disabilities. There is little awareness about this fact and we need to educate both governments and civil society on this and how it may be achieved in the context of persons with albinism.

I also wish to add that persons with albinism are also covered by laws protecting people from racial discrimination. Even though we are not a “race,” the term “racial discrimination” in the UN Convention on the Elimination of Racial Discrimination has been interpreted to include discrimination based on “colour” as a factor independent of race.  Accordingly, the experience of persons with albinism can be robustly understood to be an intersectional one. This means we face more than one or “multiple” and “intersecting” forms of discrimination highlighted in the area of disability and in the area of colour.  Aside from this two key areas, there could also be other areas of discrimination that would aggravate a person’s situation and/or enjoyment of her human rights e.g. if a woman with albinism is also HIV positive.

6. What do you know for certain you want to have achieved once you leave your current office?

I hope I leave with no attack happening or that the last one was last heard of long before I left. I also hope that there are concrete and sustainable steps put in place to prevent and treat skin cancer in all affected countries as the condition kills far more persons with albinism than the attacks being reported.  I also look forward to ample awareness raising and self-education for persons with albinism themselves so that the condition will be less a novelty and more of a condition of life.  Further, I hope that persons with albinism would be far more empowered to engage with the international community through their growing number of civil society groups.  I also hope significant inroads would have been made to address and stamp out root causes of attacks particularly witchcraft related beliefs and practices which have spurred the attacks.

7. To any person with albinism reading this, what would you like to say?

Be the best version of yourself and the world will learn far more from you than from stereotypes and myths.

Photo Credit: UN Albinism - Ikponwosa Ero, Personal Page Facebook

Curated by Sethu Mbuli

[lovethisskin]

In Conversation: Refilwe Modiselle

Dear Love, This Skin Friends,

We’d like to introduce these special entries to our community, where we have candid conversations with people with albinism; on life, their upbringing, their aspirations, but mostly on what has inspired their strength, bravery, and how they’ve asserted their individuality despite what the world has been saying to them.

Hope you take away pockets of wisdom from the conversations,

This week, we had the honour of chatting to TV host, Motivational speaker, MC and Africa’s first successful model with albinism; Refilwe Modiselle –

 1. Do you remember the particular moment you realized your “difference” from others around you? Talk to us about this.

I realised my difference from a very young age as a child who was born in the township. I was born in Soweto Rockville where we all know it's a predominantly black community & I seemed to be the thorn among the roses with being a white looking individual. So I've always known I was different but never questioned it because of the household I was brought up in. My mom never made me feel like I was different. I had to notice it from outside instead.

2. There’s often a struggle between being vulnerable in talking about one’s experience with living with albinism – and protecting yourself and your independence, have you ever struggled with this and how have you navigated it?

I've never felt vulnerable nor felt like it was a struggle for me to talk about my albinism because from a very young age it wasn't a factor for me. I grew up with assurance that came from home & that I was loved, so I never felt like I was inferior to myself instead it was the questions that came from the exterior. And as a child I don't think you are fully aware of what's going on with you until you are subjected to have to explain yourself to society & that was only when I was a lot older & had to realise I was dealing with ignorance and a lack of education about albinism generally.

3. Growing up, did you/family have any comprehensive understanding of albinism, and have things changed?

My mom knew exactly what it was & so did my family, otherwise she wouldn't have gone to the degree she did as a parent to ensure I received the best & necessary care. I come from a learned family, so they are all clear of what albinism is and that hasn’t changed.

4. How do you navigate the day-to-day demands of your life with being partially sighted, and what has helped most for you?

Funny enough I think you learn to live with your "limitations" even though it is tough when you have to keep explaining yourself but I think the strength & confidence in me allowed me to speak up instead of keeping quiet. So I often joke about my short sightedness but end up making people understand. It's tough for me to get a licence at this point. And when I did work a 9 to 5 in an office I found that I'd take strain & often wouldn't feel comfortable explaining my difficulty. But I often  found myself shielding myself because I didn't want pity or to be made to feel less so I'd push to do things just as normally with a confidence. I probably pushed twice as hard as anybody.

If there's one thing about me is that I'm not ashamed to tell you I can't see.... if anything I've turned it into a joke for myself because I need you to understand I'm not phased by my limitation. I do the best I can with it & have never used it as an excuse to not do what I want. So I'm quite frank.

For instance if I'm cast for a show to host I'm upfront I don't see autocue, so they will accommodate that I need to have a confirmed script prior to being on set. In cases where I will struggle with something I will mention my difficulty but still try do what is needed until it defeats me .

I'm not shy to speak up & don't feel I need to validate it to anyone.

5. Did you have anyone in your family/community/role models of people with the condition, - what was this like. If not, do you think you’d have had a different outlook of your place in the world?

I didn't have role models who had this condition for a very long time until I looked to people like Salif Keita. And growing up I had to be my own reference because I was never socialised with people that had albinism. I was encouraged & given the freedom to become my own person/individual.

I was never encouraged to group myself or feel like I should be with people alike.

6. You say you were never socialised with people that had albinism. And “I was never encouraged to group myself or feel like I should be with people alike" How has this affected your interaction with other people with albinism now?

This question is relative to every person & may not be an albinism factor. For me I wasn't affected at all, it's not like I didn't know how to relate to my own people. I was just never raised to feel that I needed to belong anywhere. It's like asking how do black people relate to each other whether you are in Europe or Australia, it's still normal for you because you were raised to respect people generally.

So my approach on people has never been one that segregates. For me people are people period & my interaction has been to treat people as they are, not because they have albinism or black or white or green. Through my own view of the world as a whole I developed my own thinking not the expectation that I'd feel different among my own people.

These conversations start from home. I believe your thinking or principles & thoughts are shaped by what's instilled or nurtured in you from home. That's your first point of reference for anything in life before you exposed to outside. This will often be a determining factor on your own outlook or approach of certain things.

7. Being hyper visible - First as someone with albinism, and also as someone in the media industry, sometimes both:

 How do you reconcile with representing so many within that public space, and also staying  true to who Refilwe is (outside having albinism), and not have to, so to speak “Feel married to your condition”?

I've always maintained to teach about albinism through the things I do whether it be in or out of the media space and for me I've chosen challenging spaces to break those barriers. So my albinism is a voice as is that not only relates to those living with the condition but has inspired others beyond, anybody that has to face societal discriminations.

8. What would you like to say, especially to young South Africans, living with albinism?

You are not an "albino" you live with a condition that is albinism & it must never define the person you are meant to be in this world. Live your life to the fullest making sure that regardless what the world says or thinks, you can win in your skin. Be you, your own person, don't allow society to put you in a box or make you feel inferior to who you are.

[lovethisskin]

WHAT THE FUTURE HOLDS

Friends,

Here's the official vision and mission we've set out for this organization:

Albinism is a genetic disorder which is more common in southern Africa than anywhere else in the world. One in approximately every 3 500 people in South Africa is born with albinism. Albinism is caused by errors in the body’s machinery which make melanin (the brown pigment) which is usually found in skin, hair and eyes. This causes people with albinism to have white hair and skin and pale eyes. Melanin is also important in the development of the eye and optic nerve in babies before birth.

Because of this, all people with albinism suffer from visual impairment and many are legally blind. Albinism can affect people of any race and culture. People with albinism are usually born to unaffected parents. This is because it is a recessive disorder, meaning that each parent passes down one defective copy of the gene to the child. A person must have two defective copies to show signs of albinism. Albinism is not fatal, nor is it degenerative, which means that people with albinism can live full and productive lives despite their visual disability. However, currently people with albinism in South Africa face many challenges which make achieving their full potential a lifelong struggle.

These challenges are both physical and psychological. Physically, people with albinism have extreme sensitivity to the sun, putting them at risk of skin cancer and scarring caused by South Africa’s harsh climate and inadequate protection. In addition, most people with albinism do not receive adequate support for their visual disability in schools and other social structures. Psychologically, people with albinism are exposed to bullying and social exclusion from a very young age. They are made to feel that they are ugly and unwanted. Many people believe that people with albinism are evil or cursed and because of their visual disability, people think that those with albinism are unintelligent and treat them as such.

These problems affect people with albinism all over the world but on the African continent people with albinism face a unique and far more sinister set of problems. Among many African cultures the body parts and organs of people with albinism are believed to be magical and are used to cure a variety of afflictions as part of traditional medicine. Many people with albinism have been kidnapped, murdered and maimed across Africa because of this. Although these practices are more common in eastern African countries such as Tanzania and Malawi they do occur in South Africa and many South Africans with albinism live in fear of their lives.

Despite the existence of many organisations within South Africa who advocate for the rights of those with albinism, to date there has not been a large-scale, co-ordinated project to practically address the full set of needs for those living with albinism in South Africa. This led Sethu Mbuli and Dr Helen Webb, both people with albinism, to invest in ‘Love, This Skin’.

 The vision of this organization is to improve the quality of life for all South Africans living with albinism. To achieve this, various initiatives will be set up to provide the following to people with albinism:

• Medical Information: Most medical information about albinism within the healthcare system has not been updated for many years. It is essential to keep healthcare workers and patients with albinism informed about the genetic causes of albinism and ongoing research in other countries into cures for albinism and other diseases which cause visual impairment.

• Sun Protection: In order to reduce damage caused by the sun, it is necessary for people with albinism to have access to sunscreen, hats and sunglasses. These items should not be a burden. Sunscreens should be easy to apply, moisturising and non-greasy. Hats and sunglasses can be fun and fashionable and should suit the individual’s taste. These products should all be manufactured locally.

• Eye Care: Currently optometrists in South Africa do not receive adequate training in the affects and treatment of visual impairments caused by albinism. We aim to provide this training to a select group of interested optometrists and to ensure that every person with albinism has the opportunity to be treated by one of these optometrists as early in life as possible. We also aim to make fashionable prescription spectacles and a variety of visual aids such as magnifiers accessible to people with albinism.

• Quality Education: This requires that educators receive accurate and up to date information about how best to accommodate learners with low vision in their class rooms. This applies from foundation phase right through to tertiary education.

• Support: This is the objective closest to our hearts. Every person with albinism deserves to feel beautiful, self-empowered and have a clear understanding of what’s possible for their lives. We aim to achieve this through mentorship, counselling and support groups, as well as promoting positive exposure of those with albinism in the media industry and beyond.

We seek to meet these needs by engagement with all relevant stakeholders, from people with albinism and their families to teachers and medical professionals. We aim to launch small focused projects within a unified infrastructure by partnering with existing non-profit organisations, private businesses and relevant government departments. If we can garner support from these entities we firmly believe that a better life for all those living with albinism in South Africa is possible in the foreseeable future.

[lovethisskin]

About Love, This Skin

Hello friends,

We (Sethu and Helen) would like to tell you a little bit more about this exciting venture that is Love, This Skin.

Despite coming from different races and backgrounds, we have been drawn together by our common experiences as people living with albinism.

Although we are both successful independent women, in spite of visual disability caused by albinism, some of our shared experiences have been very difficult.

We envisage a different future for people with albinism, one free of fear, exclusion and discrimination, but more importantly, one of self love and self acceptance despite how the world treats us, and where we claim and take ownership of our possibilities.

We want this to be a space where people with albinism can find strength from each other, where we share our own personal survival kits and stories of triumph.

In order to do this, we need to provide information and support to people with albinism, their families, the medical community and educators who work with people with albinism.

We hope to partner with all organisations, schools, institutions and individuals who share this vision of a better future for those with albinism. We hope you will join us!

Sethu Mbuli and Dr Helen Susannah Webb Founders: Love, This Skin