Civil Rights and Vitiligo: Part 3

What can we do to combat discrimination against people with vitiligo?

Injustice anywhere is a threat to justice everywhere.
Martin Luther King, Jr.

Perhaps you have never been discriminated against because of vitiligo. Perhaps you have been ignored or mistreated but simply overlooked the issue. Perhaps you have been mistreated, bullied, or made to feel less than.

What do we do about it? What can we do in the face of ignorance and a culture of perfection? How can we, as people with vitiligo, as people that love and support others with vitiligo change the conversation on vitiligo and lift up those that are suffering?

Thinking again about Rep. Parren Mitchell and his work to support vitiligo with federal dollars for research, it occurs to me that few of us are in a position of power to do as he did. Few of us are in Congress and few of us even know a congressperson.

Together and individually we are capable of changing the world’s perspective on vitiligo. Together and individually we are capable of changing the world’s perspective on beauty. Together and individually we are capable of changing the world’s perspective on disease.

Is this something you want to do?

Where do we go for examples? What’s the first step?

Thankfully we are not alone in this. We look around and see examples of courage and compassion that guide us on our way.

1: Michael Jackson and Vitiligo

As perhaps all of us know, Michael Jackson suffered from vitiligo. There is a strange conversation about this as some accuse Michael of lying. As if the sharing about his struggle with a skin disease is a mask for a secret to desire to be something other than Black. As if vitiligo were a fake tale of suffering hiding an unexplained desire to be someone other than himself.

This is the mean, ignorant and frankly, racist conversation. And Michael chose to speak his truth on an international stage with an interview with Oprah.

From the interview:
Michael : Okay, but number one, this is the situation. I have a skin disorder that destroys the pigmentation of the skin, it’s something that I cannot help. Okay. But when people make up stories that I don’t want to be who I am it hurts me.

It’s amazing to me that people continue to make up stories to explain a simple disease.

That aside, there is a simple lesson on dealing with discrimination that we can learn from Michael Jackson: Speaking the truth in the face of discrimination is powerful and changes how people see us.

How many of us with vitiligo are grateful to Michael for opening up a national conversation on vitiligo that allows for us to quickly explain the disease and to quickly and simple communicate the complex issues we face?

Michael showed his courage in that interview by choosing to:

  • Tell the truth
  • Be honest and vulnerable about his discomfort
  • Be transparent

This is something we can all do. When someone asks us about our skin, it’s an imposition. It may come from a genuine place of concern, and still it’s an imposition.

No one has the right to demand of me that I reveal to them my personal medical history. That is private.

Whatever you decide to share is your personal business. What you share about vitiligo is a kindness you are showing others. It’s a privilege to share and to be listen.

When we chose to share, and sometimes we need to, it’s a courageous act. As Brene Brown shares:

“Courage is a heart word. The root of the word courage is cor – the Latin word for heart. In one of its earliest forms, the word courage meant “To speak one’s mind by telling all one’s heart.”

Sharing our story is caring.

2: Africa and Vitiligo

ogo-solo-03Ogo Maduewesi, my friend in Nigeria, provides us with another example of courage and practical support for vitiligo.

Having vitiligo in Nigeria and other African countries is an entirely different experience than in coutries like USA, UK, Canada. There is less awareness about skin disease and higher visibility of the disease. It’s harder to hide and harder to explain. More judgement and discrimination is the result.

She speaks the truth about the disease and she makes herself available to people that are suffering from discrimination and fear because of vitiligo. She has built an organization, Vitiligo Support and Awareness Foundation around her desire to spread awareness in West Africa. She reaches thousands of people with her message of courage, information and hope.

For those of you who don’t think discrimination is a real problem read Ogo’s story below:

…there was one overzealous man whom after staring at me for a while walked up to me rubbing my face and asking with very annoying laugh, what is this little girl? I was so surprised, embarrassed, insulted and amazed that I asked him: “do you have to touch me to ask that.” …he went on asking why he can’t touch… someone asked me to try bleaching my skin and now left with white patches and that brought about serious laugh from everybody in there. At this time I had lost it, I was so humiliated and embarrassed, couldn’t hold it and was already crying and was ready for the worst, he went on having fun humiliating me, but at the time I had told him that if he dare touches me again that I will blow him. He advanced towards me again to touch me, but for the intervention of a woman in there who’s been watching all the while, I left there very sad and in tears.

Another time I felt so humiliated was the day a girl who got into the commercial bus I was already seated looked up and seeing my face (peak of my Vitiligo) screamed and the driver of the bus stopped and she jumped down from the bus. Every other person now started looking at me as if I had some contagious deadly disease; I tried ignoring their stares but was dying deep inside.

We can only imagine how these experiences would shape each of us. For Ogo, she decided to fight and she decided to love those that mistreat her and educate them as much as she is able.

Do all of us need to start an organization? Do we need to be interviewed on TV? Of course not.

But we can do as Michael did: Tell the truth to those that ask and deserve our truth.

We can also do as Ogo does: Loving share our stories with each other supporting other with vitiligo along the way.

These two things, we can do, together and individually.

On my Facebook page, ( and on this website, people share their stories, post their pictures and in doing so, change the conversation around vitiligo.

It’s easy to think that by hiding vitiligo, our lives are simpler. Its natural to think that by avoiding conversations about our imperfections, our lives are simpler.

What I have found, through this website and in my life, is this: talking about vitiligo is very important if we want to stop worrying about vitiligo. Sharing our fears about vitiligo is very important if we want to overcome those fears.

And again the words of Martin Luther King Jr can help us stay focused:
We must develop and maintain the capacity to forgive. He who is devoid of the power to forgive is devoid of the power to love. There is some good in the worst of us and some evil in the best of us. When we discover this, we are less prone to hate our enemies.
Martin Luther King, Jr.

Winnin Harlow

10986371_807623835957910_1278030355_nAdditionally we can learn a couple things from the young Chantelle Winnie, aka, Winnie Harlow. At a young age she pursued a career as a model, allowing herself and the vitiligo on her skin to be seen, really seen.

Taking a picture of yourself where your vitiligo is visible and sharing it with the world is a simple yet powerful way of saying to the world:

“I am beautiful. See? Come and look.”

While few of us will be models, I don’t aspire for that work myself, we can learn from her example of confidence. Her confidence, coupled with a beautiful face and frame, presents something quite different than many other models. Her confidence is key.

I recall some of her first modelling work before America’s NExt Top model discovered her. Her posture, her walk, her tone of voice all communicated a confidence and comfort in her own skin. This is what you see in her pictures: A defiant invitation to see her, not her disease.

These are things we can do as well. Instagram is one place where we can see the effects of Winnie Harlow and her work. People are posting pictures of themselves with hashtags such as: #vitiligo, #vitiligonation and others. That sharing of imperfection is courageous. We support this and we can also do this.

Hiding from the camera is understandable. But using the camera as a tool to make space for others is one simple way we can fight discrimination. It’s a defiant action that changes the conversation. It’s a courageous way to bring out of the shadows our fears and insecurities and turn them into strengths that others are encouraged by.

Most people get vitiligo between the ages of 10 and 30. These are critical years, formative years. These are the people most affected by vitiligo.

In short:

  • Tell the truth about vitiligo
  • Inform others about vitiligo
  • Be seen with vitiligo

Please tell your truth in the comments, post your picture on facebook and tell the truth about vitiligo.

What else can we do? Would love to hear your thoughts in the comments!

Civil Rights and Vitiligo – Part 2:


Why do people discriminate against people with vitiligo?

For those of us that have vitiligo, the fear of rejection because of vitiligo goes to our very core. It’s on our minds, it’s in our hearts, it comes across in our actions. One of my readers writes:

I have had several bad relationships with guys who never truly accepted me or my body.

It’s something we have all feared at one time or another. Perhaps we stop wearing clothes that show vitiligo, perhaps we wear makeup, men and women, to cover vitiligo and perhaps we don’t go outside as often for fear that we would be judged, be rejected because of a skin disease.

This is what we fear, even when we are in a relationships.

This is what Rep. Parren Mitchell meant when he wrote in the proposed National Vitiligo Control Act: that vitiligo “cripples the personality of individuals suffering from” vitiligo.

Her are some more comments from my blog:
My self esteem doesn’t exist anymore and I feel like I will never feel the happiness I did before.

An another:
She is so cautious and careful what she says, always concerned that I might come to love her less and find someone else. But it is so not true, and it is hard to explain her. She has these “people in her head” I call it that probably constantly tell her to be suspicious. She has become so jealous.
It is not just this skin condition which makes it hard, it is the mental effect.

In this 11 yrs of journey with this disease, i’ve worst experiences in my schooling, college where i’m harrassed, teased, left alone. No one was there for me then. I’m even in a relationship which ended very badly. There is nothing in my life that i can feel confident & happy about. Neither my family is strong financially nor I’m an unwanted person in the family. I cry alot for their effection,love & care.I want my mom to touch me affectionaly. But she doesnt.

This is what we must all help each other and ourselves with.

If you are living in the USA, UK, Canada or other first world countries there is a better chance of having an easier time than people in developing countries, in Africa and East Asia. The high contrast of dark skin next to skin with zero pigment coupled with a lack of awareness about diseases, means that men and women with vitiligo are routinely estranged, abandoned, shunned because of vitiligo.

It’s unjust, unfair, unethical.

How should we live together? What’s the right thing to do about vitiligo?

It’s important to note that vitiligo affects each of us differently regardless of skin tone. Light, dark, and everything in between doesn’t matter to vitiligo.

I have heard from people all over the world discussing these very issues. Men worry about marrying a women with vitiligo. Parents worry about their children being able to find a spouse. Children go to school and are made fun of. I even hear of teachers judging children in their care because of vitiligo.

For children, vitiligo can be particularly troublesome. There are stories of children being mistreated by teachers, ostracized and ignored. If people don’t understand that the disease is contagious this mistreatment, will continue. So, this is not just an issue of depression, or being shy. It’s an issue of ethics.

In Nigeria, my friend Ogo has founded a campaign to address these issues. As part of that, she created this cartoon that illustrates how vitiligo effects lives in West Africa:

It’s a scary reality the world over. Vitiligo and other skin diseases are not just cosmetic issues. These disorders are the cause of division, rejection and pain.

What do we do?

Supporting Research:

We have one example in Parren Mitchell. You can ask your government to sponsor research into understanding and treating this disease. For those of you that don’t like the idea of using taxpayer dollars on medical research might note that the vast majority of medical research in universities, here in the US and elsewhere is paid for by governments. Cancer research, vaccines, AIDS and HIV and more are supported greatly by government grants.

In China, there are entire hospitals and clinic that are dedicated to treating vitiligo.

Here in the US there are organizations that focus on raising funds for vitiligo such as:

It’s critical that research be done on the disease particularly autoimmune diseases, many of which are far more medically debilitating than vitiligo.

But what else can we do, we as individuals with vitiligo? How can we help people where we live and around the world that have vitiligo, struggling with social stigma, depression and fear? What can we do besides fund scientific research?

How do we as people with vitiligo help all people with vitiligo on a practical level?

We will cover what I think in part 3.

For now, when have you experienced fear of rejection or actual rejection because of vitiligo? What did you do? How did you feel?

Please let me know in the comments! Look forward to hearing from you!

Civil Rights and Vitiligo – Part 1

Why is it that so many people don’t know what vitiligo is?

How many of us learn about vitiligo after the fact, after our diagnosis? Vitiligo isn’t common knowledge. It’s one of those things we all must confront as we consider the ramifications of a small little spot of depigmented skin that will most likely grow. Even with people like Michael Jackson, Lee Thomas and the model Chantelle Winnie, many people don’t know what vitiligo is. It takes one of us, those with vitiligo to talk about vitiligo.

And that can be very hard to deal with.

In the mid and late 70s and into the early 80s, a civil rights crusader by the name of Parren Mitchell fought to introduce a bill to the United States Congress: The National Vitiligo Control Act. This act declared:

…the findings of Congress that vitiligo is a disfiguring, inheritable disease which cripples the personality of individuals suffering from it and which afflicts about three percent of the U.S. population.

Provides, under the Public Health Service Act, that the Secretary of Health, Education, and Welfare shall carry out a program to develop information and educational materials relating to vitiligo and to distribute such information and materials to persons providing health care and to the general public.

Who was Parren Mitchell and why did he care about vitiligo?

M000826Becoming the first black congressman from Maryland in 1971, being the first black person to attend graduate school at the University of Maryland and being a member of the Congressional Black Caucus, Rep. Parren Mitchell was a leader of the Civil Rights movement and at the forefront of efforts to help minority owned small businesses.

Civil Rights, anti-poverty, minority business owners, a World War II hero awarded the Purple Heart, and vitiligo awareness. And that’s just highlights of this man’s life.

How did vitiligo fit in? As Martin Luther King Jr. famously said:

I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin, but by the content of their character.

Martin Luther King, Jr.

This is what everyone with vitiligo asks for: to be judged by the content of their character not by the colors of their skin. And vitiligo is particularly noticeable with dark skin tones because of the contrast.

Being a champion of those that society too often ignores, Rep. Mitchell fought for almost ten years to have federal funds earmarked for vitiligo research. Vitiligo “cripples the personality of individuals suffering from it” wrote Rep. Mitchell. He sought to better our understanding of a disease that changes skin tones, changes perceptions.

Rep. Mitchell recognized what those of us with vitiligo know all too well: vitiligo can be crippling to our sense of self. And people with vitiligo need help.

But what kind of help do we need? That’s something we will cover in part two.

And what do you think? Is vitiligo awareness a civil rights issue?

Vitiligo Correlations: Gluten and Autoimmune diseases

One of the first things I tell people that have been diagnosed with vitiligo is that there may be a vitiligo correlation between a gluten intolerance and the spread of their disease. Do I have proof? No.

But I strongly suspect that food allergies contribute to the worsening of vitiligo even if food allergies are not the direct cause.

Food allergies are something that can be tested and demonstrated. If you have vitiligo, find out if you have food allergies. Don’t cause problems if you don’t have to.

Will going gluten free cure your vitiligo? Perhaps not. But, I have noticed that when I eat particularly clean, spend time in the sun and drink very little alchohol or none at all, my pigment comes back in those spots exposed to the sun. It’s slow and my vitiligo expands in other areas but I am encouraged to see repigmentation of any kind.

 Other vitiligo correlations:

Vitiligo Success Stories

There are so many vitiligo success stories and I am one of them. I am proud to say that vitiligo no longer holds sway over my life and choices. And I believe this is possible for everyone that has vitiligo.

My vitiligo success story is perhaps a bit different than you might expect. I have had vitiligo for just over ten years now. It has slowly grown to more and more areas of my body. My face, my hands, my legs, my feet and my chest.

There was a time when I would not ever where sandals. Only shoes that covered my feet. There was a time when I never wore shorts. Until last year, I had not been swimming. For almost 6 years I never went to a pool party or went swimming in the ocean.

For me, going outside was difficult. Facing the world with two skin colors was something I was afraid to do.

What changed? What led to my success with vitiligo? It was one day at a time, deciding that being afraid of the world, afraid of judgement, afraid of rejection was a waste of my time and other peoples time too.

I started to face my fears. Socially, emotionally, physically, spiritually. One fear after another was faced. One awkward moment after another. And there were many. Still more to come I am sure. And I am happy to be able to say that vitiligo is something I rarely think about as something I am afraid of.

I am not afraid of more depigmentation. Its happening. I am losing pigment here and there.

But I am not scared of it to the point where it disables me. In fact it enables me! Vitiligo enables me to see the fiction of cosmetics. The fictions of our socially constructed notions of beauty and attractiveness. I am able to see more clearly myself and other people. I can see people more clearly as themselves.

It’s a thrill to know that sunshine and peoples gazes are sources of encouragement for me. That is my vitiligo success story.

What’s your vitiligo success story? If you have vitiligo you have one. And you will have many vitiligo success stories. I can’t wait to hear them.

Does vitiligo go away?

The quick answer is: yes, absolutely, vitiligo does go away.

Of course the answer for you may be more complex. Vitiligo is an auto-immune disease and is not understood all that well. Progress is being made but a real understanding is still years away.
Continue Reading

Healthy habits and vitiligo

One of my struggles is keeping a healthy self-image. Having vitiligo makes it easy to believe I am less than I am. Two skin colors is not the norm and this fact at times to my feelings of being non-normal, of being ugly, of being unattractive.

I have learned that through healthy physical habits, I develop healthy mental habits. By learning self-discipline in one area I have developed self-discipline in others.

I have such a fragile mind. I easily react to situations rather than responding with thoughtfulness. It’s difficult for me to keep health habits and keep a healthy state of mind.

A few things that have helped: Continue Reading

Being a king with vitiligo: An Example Of Courage

Have you ever wondered what it would be like to be a king?

I sure have once or twice. And then the other day I watched that fantastic film about a King of England. Great film.

Not just because it got a few oscars. Not just because the acting is great. Not just because the film is beautifully shot.

All those things are nice. All those things make the film really enjoyable to watch.

Here is the basic story.Continue Reading

It doesn’t get easier, but it does get better.

The other day I was thinking about my parents.

They have been married for almost 40 years. 40 years.

Thats a long time to me. They have been married for longer than I have been alive. Isn’t that amazing?

I was thinking about all they have been through. I know raising me could not have been easy but they did it and they tell me raising their kids, they raised a few, is the most rewarding part of their lives.

They would not trade that experience for anything. Continue Reading