World Rare Disease Day

It was exactly a year ago, today that I was in Pfizer’s headquarters in Tadworth with the big wigs (of the pharmaceutical industry, my young student friend, Clara whom I mentor, lives with sickle cell and absolutely adore and John, CEO SCS) educating and representing the sickle community in the recognition of World Rare Disease Day! There are over 6,000 rare diseases in the world and quite a bit of rare diseases are still formally or clinically undiagnosed. 

Each year the World Health Organisation and other global health agencies celebrate rare disease day to raise awareness of some of these conditions. 

Sickle cell is still classified as a rare disease in the U.K. simply because it is known to be affecting 15,000 people across the U.K. Internationally and nationally, the numbers are relatively low compared to conditions such as cancers and diabetes. It may arguably be the reason why sickle patients are known to be receiving inequalities in the health and social care system because of the (in)significance of the numbers affected nationally. 

The numbers are what classifies a condition as a rare disease. However, records of people identified to be living with the traits in the U.K. is almost 600,000 and counting each year. The question is at what point does the most inherited genetic condition in the U.K become ‘less rare’.

I think after Germany and France, the U.K. is the next highest country in mainland Europe to have patients living with sickle cell.

Nigeria latterly remains the highest numbers of people living with sickle cell globally – with a breaking number of around 5 million people with the condition and 115.000 sickle babies continue to be born each year. 20% of the entire population have the trait. These numbers are frightening and the mortality rates are terribly poor compared to mortality rates in the U.K and the U.S. 

Yet the awareness is almost non existent in Africa and remains largely so globally

Being from Nigeria originally, I marvel at the shocking figures and wonder when I can get the strength to start some work at ‘home’. 

Today, I reached out to my friends with other rare diseases such as thalassemia, chronic pain, blue diaper syndrome and others who suffered rare cancers to tell them they are not alone in this. We all are together and hugely remain some of the toughest cookies in the world!

Here is to everyone with a rare disease like myself most especially my sickle cell warriors. Happy Rare Disease Day!

Hope you also got to have some pancakes? Why not?

Colour Photographs: 1977-1988

Yesterday, I matched to Mayfair to see an exhibition which popped up in my inbox a few weeks ago.
I was in need for a wee bit of art. So we went to the Beetles and Huxley art gallery in Mayfair to see ‘Colour Photographs’ .

Ah, may I add that some of the finest places and things in London are free. It was free! 

From Virginia, to Oregon, to Washington, Vermont, Texas, Connecticut, this is a look at the American photographer Joel Sternfeld’s works ‘Colour Photographs: 1977-1988’ when Sternfeld jumped in a VW camper with his 8×10 inch camera and hit the road, aiming to capture a complex vision of America.

Some vintage dye transfer and chromogenic prints which combine excellent composition and beauty with an ironic, humorous and sometimes sinister portrayal of society. Sternfeld says “The reason that I’m showing this work now is that I remember feeling similar fears back then as I do now. If anything, there is an even stronger sense of apocalypse in the air today.”

It was brilliant…

We discovered Ralph Bar by Ralph Lauren and finished off the American culture with some fine cocktails before heading to the Ivy Brasserie in Kensington for dinner to become British again. 

The Bubbly Black Girl Sheds Her Chameleon Skin

It’s been a while since I went to the Theatre. The last play I saw was either at the Barbican “The Return”, or maybe it was “Soul” – the life of Marvin Gaye in Hackney Empire – one my brother treated me to. I think it was just after summer of 16. 
I love stage culture and would watch any stage performance. However, I am not massive on big productions, I like the smaller Indie productions – lots of truths to take home and why not patronise them? Keep the funding going in your local community too. 

I have club membership with the Barbican, I get discounts on everything but theatre. LOL..So as a woman in the Arts, I spend a lot of my ‘arty farty’ time there. But I have now discovered my amazing local theatre has got ‘game’ too so I am looking forward to seeing more plays and musicals there. 

Anyway, my lovely friend, Donna had a couple of tickets she got at discounted rates to go to Theatre Royal, Stratford East to see the ”The Bubbly Black Girl Sheds Her Chameleon Skin”. She asked me to come. It’s local to both of us as we are E15/10 girls.

It was my first time there. I seem to be having lots of ‘firsts’ in 2017.

I thought it was one of the classiest theatres I have ever been to. The interior was a traditional Victorian style building with triple level seating. It has an ornate proscenium arch that compliments a luxurious rouge and gold decor. The production team, visibly based in the basement and the top level gallery. 

I had heard about the bar and the Caribbean restaurant there from a few people complimenting the services. The bar was cosy and the staff were very warm, welcoming and full of smiles and flirt. 

The musical – ”The Bubbly Black Girl Sheds Her Chameleon Skin” by Kirsten Childs.

Because the title is a mouth and word full, I will refer to the musical as ‘Bubbly’ a nickname adopted by the lead female character, Viveca. 

Bubbly was set in the early 1960s where a young black girl, Viveca Stanton, not very unusual, had dreams of being the ‘perfect blond and blue eyed white girl’ trying to become a well-adjusted girl in Southern Los Angeles. It demonstrates her life as a little girl, to a teenage girl and advances to her life and her dream chasing career for fame and career satisfaction in Broadway, New York. 

This musical had been historically performed in Broadway in 2000 or so and was an award-winner ‘wowing’ lots of its audiences. 

It’s now been replayed, European style premiered in Theatre Royal for the very first time. 

Viveca is portrayed as a self-confident and intelligent, young lady, proud of who she is and her heritage, facing the conflicts of the civil rights era in America with optimism rather than anger. 

Her friends refer to her as an ‘Oreo’, deluded about her position in her community. She accepts this position with grace almost as a compliment of emphasis on her ‘superiority’ over other black people when she says (paraphrasing) -What’s wrong with being an Oreo, it’s is a damn too good cookie…

Encouraged by her parents, she believes that the Police wouldn’t randomly arrest African-American men without evidence, that the best dancer in ballet class should get the lead role rather than the lightest-skinned ones and that children of all ethnic backgrounds can get along. She is indoctrinated to believe the black communities who are violently abused by the law are way too different from her. Viveca demonstrated that even within the black communities, there can still exist a class differential. 

She picks up ‘white culture’ in form of ballet dances, builds relationships with white men, had a white doll growing up, heads to Wall Street to take up an administrative position in a cooperate firm and eventually desperately pursues a place in Broadway. A reflection of a life that a lot of black young women in that era would not have imagined living. 

As she grows up and becomes more aware of the injustices around her, she must learn to reconcile her hope and faith in the world with the harsh realities of racism and sexism.

The musical’s themes focuses on self-acceptance and self-denial, racism, sexism, civil rights and independence just as true as they do in the Broadway hit. 

The musical was initially performed in 2000 at Playwright’s Horizons in New York. It was produced to be a saucy, sassy and cheerfully satirical look at how African American women have been defined (by others and themselves) from the 1960’s to the 1990’s. Not at all different from the current landscape to be honest. Look at the headlines on Viola Davis amongst many. 

The book by Kirsten Childs describes the story in a summary evaluating it as …What’s a black girl from sunny Southern California to do? White people are blowing up black girls in Birmingham churches. Black people are shouting “Black is beautiful” while straightening their hair and coveting light skin. Viveca Stanton’s answer: Slap on a bubbly smile and be as white as you can be! In a humorous and pointed coming-of-age story spanning the sixties through the nineties, Viveca blithely sails through the confusing worlds of racism, sexism and Broadway showbiz until she’s forced to face the devastating effect self-denial has had on her life.

The scores of the musical includes Motown, R&B, jazz, pop and gospel. Lots of dance too.

I found it very witty, edging on lots of satirical implicitly, sharply upbeat, absolutely humorous and hilarious, sassy and light-hearted and to an extent was underplayed in a way that could have potentially overwhelmed an audience (a black audience) with intense emotions bogging us down with strong themes of offensive racial inferences. Touché. 

I absolutely recommend it. But you know what, I could totally relate with a lot of Viveca’s story and as the black people kept going on about ‘Black being beautiful’, I say, everyone has beauty regardless of their race or colour. 

It made me reflect a lot about what it looks like when a black African girl/woman picks up interests in the arts, science, culture, travel, writing poetry, inter-racial relationships, ballet dance, museum/gallery hopping, nature loving, classical music, lover of Taylor Swift et al,et al and what this may appear like from people in the black communities. 

They would obviously call you an ‘Oreo’

I am told many times that I am an ‘oreo’, a ‘coconut’, a lover of the white culture, and I am not moved or offended one bit by who I am or what my identity is. Very dissimilar to Viveca, I have found my identity and have self-discovered a long time ago. 

I can’t confidently discuss coffeehouse folk music with my some of my black friends because it’s not something they would listen to usually- and that’s fine. It’s the same way I can’t confidently discuss neo soul music with some of my European friends because they won’t have a clue who Shuggie Otis is and that’s the beauty of culture and diversity. 

I wondered if there was a thin line between one being different from what their cultural norms and standards expect from them and perhaps living in self-denying of who they really are, like that of Viveca’s story. You know? The chameleon? 

Does my preference for European culture superseding African culture make me any less black African than the other person? Absolutely not! Has it changed some of my values and interests, Yes it has and very positively too. 

The jury is out…I believe in mind expanding experiences, it has its uses. 

In Viveca’s case, she had a moment of epiphany. It was self discovery when she said – “I am the bubbly black girl who has shed her chameleon skin”.

#Self-discover. Be You!

What was it Wade Davis said? “The world in which you were born is just one model of reality. Other cultures are not failed attempts at being like you. They are unique manifestations of the human spirit”.