Man with albinism walks beside King

Abernathy, Foreman, King, and  Rev Douglass

Abernathy, Foreman, King, and Rev Douglass

I have just discovered something that I wish I had known long ago. It would have made me stand up a little taller. Dr. Martin Luther King walked the streets of Selma arm and arm with an albino pan-African: Rev. Jesse Douglas Sr.

There were many freedom fighters who walked and fought side be side with Dr King. Many did not get top billing or a holiday named after them but at least their names were known. Jessie Jackson and Ralph Abernathy were only two of the prominent figures we know today. But Reverend Douglas was at the time only known as “unidentified White man”.

He is now known. He not only has a name, he holds two Bachelors, a Masters, and a Ph.D. Rev. Douglas is now in his mid eighties and looks back on the days of the freedom marches.

Dr. King used Rev. Douglas’s color as a litmus test. They sent him into the White’s only diner to order and eat a meal, which he did without incident. This reminds me of the times Whites would say ugly things to me about my own people, not knowing I was Black.

I find this extraordinary because I have learned from my friends and from my own experiences that our own people don’t always accept us as full-fledged Black folks. One friend told me he was threatened at a Black rally and told to go home. I was also told to go home when in the midst of my own people. So imagine my delight and relief when seeing this photo and reading about this extraordinary man.

If you want to know more about Jesse Douglas Sr. and hear him tell his story in his own words follow these links.

http://www.minthilltimes.com/2015/01/changing-the-course-of-time-rev-dr-jesse-l-douglas-sr-was-a-civil-rights-pioneer/

https://www.youtube.com/watch?v=M8YLSeg9LmA

http://www.charlotteobserver.com/2015/01/17/5454380/charlotte-man-recalls-his-days.html#.VNT89CyCktk

Rev Jesse Douglas

Rev. Douglas today

 

Breeding out albinism?

On a 60 Minutes episode aired on October 26 there was a segment about the advances of genetic testing.

The segment called Breeding Out Disease, featured a scientist, Dr. Mark Hughes who is a pioneer in reproductive genetics. He has invented a procedure called Preimplantation Genetic Diagnosis (PGD). This procedure screens for disorders that are either born of mutated genes or inherited from the parents.

This is done by removing a number of embryos, fertilizing them, then testing each for a disease. The diseased embryos are discarded and the healthy embryos are re-implanted into the mother.

The doctor claimed he could test for and weed out Alzheimer’s, cancer, Hunter syndrome, diabetes, heart disease, muscular dystrophy, schizophrenia, cystic fibrosis, sickle cell anemia, hemophilia, and a host of other deadly traits. This can be done as long as there is only one gene causing the potential problem. The cost of this is around $16,000.

I have always asked the question, “Who decides if a trait is a disease and should be eradicated?” Is alopecia a harmful disease, or a cosmetic inconvenience? How short is too short? What about the different intelligences?

Is it really safe to assume that your child is guaranteed 100% that it won’t get these illnesses? Every person that ever was is born with several bad genes. Genes also work together and in harmony with other genes. When you breed something out, you most likely breed something in.

As I watched this I of course wondered about the implications for future generations of people with albinism. Will we be exterminated? Will we be spoken of in once-upon-a-time terms like the old plagues of Europe?

This debate has been going on for a long time. And now that the human genome has been mapped it is indeed a brave new world.

To see the segment in its entirety click here.

Being a Zerozero

I just read a book titled Golden Boy by Tara Sullivan. It’s about a 13 year old boy living in rural Africa. The family moves to the part of Africa where it is customary to hunt down people with albinism the same way they hunt down elephants for ivory.

All of Africa does not engage in this practice so neither the boy nor his family was aware that he could be someone’s prey. When he finds out that he is, he must run to a place where he will be safe.

Although he was not hunted in his part of the world he was still shunned and called a zerozero. The term zerozero and dundus are terms exclusive to people with albinism. Ghost boy/girl is another popular term. They all mean essentially the same thing: a soulless spirit inhabiting a human-like form: a void walking around in a colorless shape: less than nothing: not human. It is sometimes said that we don’t have souls and can’t feel pain. This is convenient for those who tell themselves that they are doing no harm when they murder- literally or emotionally- a person who is different from themselves.

I don’t identify with having to run for my life but I certainly identify with the treatment the boy receives from his neighbors, school, and family. I identify with being seen as a zerozero, even by my closest family members. I identify with being aware that all eyes fall on me the first time I walk into a room. I, like this boy in the book, have been discussed in the third person by people who had no idea that a human was right in the room with them.

As I read this book I realize that there is a parallel between the way the boy was treated and how we are seen and treated in the world. Even though most people have never heard the term zerozero, the treatment and sentiment is identical wherever we live.

It didn’t matter to those around me that I was gifted artistically: that I spoke well, that I read voraciously. To them I was “the albino:” the nothing: the strange girl who was too weird to be considered to be of any worth. The one who’s opinion didn’t matter.

In much of Africa people with albinism have become professors, government officials, and business owners. People are polite to them and do business with them. They even marry and raise families. Still, someone may introduce them as “my friend the zerozero” or secretly keep a Gris-Gris (pronounced gree-gree) bag, a mojo bag, or a talisman to ward off the potentially dangerous spells that a zerozero can cast.

When people openly stare at us: even walk over to us to get a closer look; when they point us out to their friends and children, when they point their camera phones at us without asking or even acknowledging us, we become a zerozero.

This of course is their point of view, not ours. Although I’ve met people who internalized that concept I have met many more who not only reject that notion outright, they are taking great strides to change the world view of who we are and what we can do. The truth is we can do anything. The world just has to catch up.

 

Presentation on albinism

Eko and Iko

About a week and a half ago an artist friend asked me to do a presentation at her art opening. The title of the show was The Performing Body. What a great way for me to present the beauty of albinism to a curious public.

I titled my piece For Display Purposes. The reason being that each time I go out in public I am in fact on display and in some ways putting on a show. I asked for a platform since I sometimes feel I am on stage and the center of attention, whether I like it or not.

I used the photo of Eko and Iko, two brothers who worked with P. T. Barnum. I saw a caption under the photo in a book that said “for display purposed” so that is what I used.

For my presentation I answered questions that have been asked of me or about me throughout my life. The audience did not hear these questions. They could only listen to my responses and deduce what the questions were. For example: I looked at one invisible person and answered, “Both of my parents are Black. Yes, really. YES. REALLY.” Then I turned to face another invisible person and answered, “No doctor, I am not anemic. Thanks for the iron pill prescription but I don’t really need them.” I went on like this for about 5 to 6 minutes. I ended the presentation by responding to what might be considered a rude comment, then saying, “You have a nice day too. Buh Bye.

The audience responded fairly well. I thought most of my comments were humorous. The audience did chuckle some; but mostly they listened carefully.  One good thing: I did have their attention. I was told that there have been times when a performer is performing and people are talking and pretty much ignoring the person.

It was a fun night. The audience was receptive and as I said, got some of my jokes. I will post the poem and flier later on.

Thank you to Senga Nengudi and RedLine art center and gallery.

 

Walking Between the Worlds

celebrate black history 001 copy

We all have “images” in our heads regarding everything from trucks to colors to shapes to people. Show any toddler a series of pictures and she can pick out the trucks from the cars, and the dogs from the cats. Even though a car might look somewhat like a truck and a certain dog breed might resemble a cat. We can usually tell the difference. Ask her how a certain color makes her feel. Ask her what she thinks of an angular shape or a rounded shape. She will have very different opinions.

I, like everyone else have many likes and dislikes, moods and feelings about certain things. I have had to learn how to present one face to one world and another face to a different world. This is true of many Black people.

For instance; I belong to several different groups. In one group I am the only pan-African. As with many Whites, they like and trust me because I am not “scary.” However, I find that if on occasion I bring up something like slavery or The Black Panthers some in the group get restless and uneasy. They see a different side of me. I have now become in their eyes, one of those militants: those angry and arrogant Blacks that they try so hard to steer away from.

At times I have heard whining from these people who feel the need to voice their concerns. One person wrote to me saying she is seeing the “darker” side of me. She actually put that in quotes. This was because I got tired of the group ignoring the needs of anyone other than Whites.

When I am in the midst of a group of White friends I am often reminded of my awkward position. We don’t watch the same movies or read the same books. We have very different opinions about the news. On one occasion we had all seen The Secret Life of Bees. It had an amazing Black cast of stars but all they could talk about was Dakota Flemming.

Then there is the dreaded Black History Month. (Cue the dramatic music.) I don’t care how liberal your White friends claim to be, they hate this month. They say they don’t like our Blackness forced upon them. They never realize that we have their Whiteness thrown in our faces 24/7 365. One comment to me was, “I don’t think about being White all day. Why do you people always think about being Black?”

It’s no easier being around Black people. Most of them have only seen us from across the street or have fond memories of tormenting us in middle school. They have never seen a real live close up albino person before and don’t know how to act. They have been taught that we are cursed or retarded or stupid or mixed or the result of incest or as Welsing says, we are mutants, and the forerunners of the White race. Some Black people treat us as enemies or intruders. If we don’t act contrite (apologetic for our albinism) they think we are arrogant.

Last year I found myself falling into my same old pattern of remaining silent instead of being my proud Black self. This year I once again vow to honor my people. I will read Black authors, Buy from Black companies, discover new Black artists and musicians and make “Black” art. I will Say It Loud.

White Christmas?

children around the world

What’s wrong with this picture?

Hotep, fellow Pan Africans.

How are you dealing with your “White Christmas?”

Each time a holiday comes around I realize how much this country is divided. I realize how in the dark White Amerikkka really is.

Once again Whites are looking at us oddly and shaking their heads, trying to figure out what’s wrong with those minorities? Why can’t they just be like us?

So now it is Christmas: a once pagan holiday, stolen and bastardized by the Christians. Everywhere I look I see White Santas, a White Jesus, White angels, and White elves. I just read that Macy’s of New York hides their Black Santa so as not to offend Whites. How sad is this?

As I write this I am listening to Renaissance music: the only music I can stand that has anything to do with Christmas. Carols are either too religious for me or too silly. A red-nosed reindeer, a talking snowman, really?

The other day I was at a so-called holiday party. Someone got it in their heads to sing a few Christmas Carols. Some of us refused to sing and we were seen as grouches. The Whites had no idea nor did they care that they were offending some of the people, even though I said this out loud. We had a Jewish guest who looked at the floor when the songs were sung. Many Whites and Christians don’t care when they are being offensive. They just want us to get with their program.

So on this Christmas day I will wish you a happy Solstice, happy Yuletide (homage to the god Odin) happy Wassail (a wish for health for you and your apple trees) and happy Christmastide (12 days from Christmas to Epiphany). Or maybe I will be more succinct and just say, Seasons Greetings.