I’m a black man.
My skin is white.
And I really like this.
It is the difference that is beautiful.
I'm a white man.
My blood is black.
And I adore this.
It is the difference that is beautiful.
YOU MAY FIND THE CONTENT OF THIS DOCUMENTARY DISTURBING
SALIF KEITA CONCERT PIRINEOS SUR FESTIVAL
Life will be beautiful.
Each person will find happiness in honor.
Life will be beautiful.
SPORTS CITY REAL MADRID MADRID, SPAIN
-Come on! -Yeah!
Hell, man!
Together, together!
Well done!
-How are you? -Good, good.
Life is like a song that goes through the body.
We all feel it and dance it in a different way,
because we are different.
Difference is good,
but sometimes those discrepancies become a problem,
even a drama.
Fighting for equality from absolute inequality.
Being born a poor, black woman...
in Africa.
An insurmountable handicap.
An imposed disadvantage.
It seems there can’t be another obstacle...
But yes,
there is.
When nature wants you to be albino...
Then,
you are lost.
Albinism is a genetic condition.
All of us have many genes in our cells.
We believe we have over 25,000 genes
and not all of them work well.
In fact, most of us suffer mutations,
we all have some variations in some of our genes
that explain why we are so different from one another.
That is why there are people with black eyes
and others with blue eyes.
Some people are tall and others are short.
All of us have different mutations in our genes that help
our body adapt to changing environments.
In the case of Albinism these mutations simply impact
on pigmentation production,
in such a way that this pigmentation no longer occurs,
and this is why, an albino person, a person with Albinism, lacks
pigment and, therefore, will have fair skin, red eyes
and white hair. It’s easily recognizable.
But, it is as much a mutant as the rest of the people
who can have alterations
and modifications in other genes.
Of the 25,000 genes that we have in our cells, only 18 are
the ones that, when not properly working,
are associated to albinism.
Luckily, there are people who watch for the welfare of albinos.
Real Heroes. Flesh and blood heroes, capable to reach hidden places
like the sides of the Kilimanjaro in Tanzania.
One of these people is Doctor Pedro Jaén and his excellent team.
Capable of travelling over 6,300 kilometers
that separate Madrid from Moshi, a population in the north of Tanzania.
Pedro and his team have been travelling to this jungle place
to operate hundreds of patients for days
and sometimes without taking a break, and all of this in an unselfish manner.
We are in the Regional Dermatology Training Center.
The hospital...
where we are going to perform surgery today.
In Africa, harassment led to the albinos’ isolation,
giving raise to endogamy.
The number of albinos multiplied in such a way that they exceeded, by 15 times,
the proportion of albinos in the rest of the world.
This team of Spanish doctors is the last hope
to save the lives of many patients.
Tens of Albinos and other patients arrive from every corner of the country.
Walking hundreds of kilometers with a single objective:
being treated by Pedro and his team.
The first day of our stay,
normally in the morning, we see all the patients...
PEDRO JAÉN DERMATOLOGIST
...chosen by local doctors in order to...
decide which of them we are going to operate.
Normally...
we see almost one hundred patients and between them we select
which of them are going to be operated.
In each patient we find a story of courage,
hardship, fight and dignity.
My name is Tatu Mirachi Juma.
TATU MIRACHI JUMA FARMER
I’ve come here to receive a cancer treatment.
I feel that being an albino is difficult,
but since God created me in this way, I’m thankful to Him.
Some people take...
around three days to come here.
This is thanks to our volunteer network that...
facilitates access to them when we are here.
The difficult cases, the ones that require complex surgery are
the ones expecting our arrival. Around twice a year.
Some of them will not be operated
because of the advanced stage of their tumors.
For others, life gives them a new opportunity.
Early in the morning Luis Ríos and Lorea start with the selection of patients.
There is not time to waste.
They seek to protect the greatest possible number of people.
A selection that differentiates to be or not to be,
hope or despair.
Life... and death.
Once we have decided what tumors are the most severe ones,
we organize the days of surgery,
We start the surgery... always prioritizing
the most aggressive cases to be operated for sure.
I don't know why.
-It must be a squamous-cell carcinoma. -Because she's albino.
-Do you want another? -No.
When everything is prepared, they start the surgery.
Ernest Kimaya’s body is full of tumors.
We are going to operate this albino patient.
He has...
LOREA BAGAZGOITIA DERMATOLOGIST
...over 6 tumors that seem to be epidermoid carcinomas.
Surgery will consist in removing them and closing the wounds.
Then, Doctor Cuevas will analyze them to confirm
we fully removed them.
That is what we usually do with all the patients.
Kimaya is the representative of albinos in the Parliament.
His life is important for the rights of albinos in Tanzania.
They go bare chested, they get much sun,
they burn many times and develop a lot of skin cancers
that limit their life expectancy.
They have a life expectancy of around 20 to 30 years.
This Spanish team is not only going to operate,
they also have the mission to teach
the doctors from Eastern African countries,
to establish a strong healthcare base over time.
This is also a challenge for...
dermatologists, because here there are albino patients
and patients with xeroderma pigmentosum.
Many of them have tumors you can’t find in Spain.
They are left untreated, they don’t operate it,
surgeries are very much delayed so,
a tumor that in Spain would be removed with a...
little edge or in a hardly developed stage, here it is much bigger.
They are very complicated patients
and represent a challenge for the dermatologist too.
-It hurts. -Does it hurt?
I have participated in the last 6 years in the workshops that we organize
here in RDTC in Moshi
and the experience is very rewarding.
Bit by bit, things are getting better
and, at least now,
some local doctors can perform surgery
and control some tumors on their own.
Patients can be treated in Africa
without waiting for anyone from outside to come help them.
We feel very satisfy
but we always feel that something is missing,
that more things can be done.
-...the left clavicle. -Pass me the tweezers.
-The left one. -Yes.
They’re very thankful patients.
SOCORRO ANSORENA NURSE
More than 6,300 kilometers to the north of Tanzania, in Spain,
we find another heroin.
Her name is Carmen.
She represents many values,
among them: The generosity and the capacity to give love.
Cristina came to us in a very unexpected way.
At first, a friend of us that lived in Mozambique asked us to handle a permit.
CARMEN MORMENEO FOSTER MOTHER
After doing all the arrangements
we offered to pick her up and take her to the hospital.
For a number of reasons,
we realized that there was nobody in Spain to take care of her.
On that day, I stayed with her at the hospital
and this day began one of the most...
beautiful stories of my life.
I stayed with Cristina, I didn’t know Cristina,
I didn’t love her...
I mean I felt all the affection you can have
for a girl that comes to your country, Spain, to die...
but to die in a more dignified way.
At least, suffering less than
she had suffered in her country until that moment.
See. From the very first moment, Cristina astonished us.
Because she came here not knowing how to speak Spanish
but she had an incredible capacity to assimilate
a world completely different to hers.
She faced...
LUIS ABAD FOSTER FATHER
...everything with...
an incredible serenity.
Even a tremendous pain
and it seemed as she had lived here all her life.
She won't be leaving for that reason...
It's incredible. I can't...
I can’t believe she is here,
she is here again.
-Are you coming? -Yeah.
ADOLFO SUÁREZ MADRID-BARAJAS AIRPORT, SPAIN
-There she comes. -Well! Look at my girl!
-Cristinita. -My girl! So stylish!
What a stylish girl!
The first kiss is for me.
-Your nose has grown. -Cris!
-Well... How is your family? Are mum and dad OK?
-They all are good! -Benito?
-He's also good. -Lulú?
-Everyone is good. -There are so many.
If you ask about all of them, we'll never end.
We have dentist now. We go to the dentist and you say:
"No, we better think about it a little bit more."
Yes, we have to think about it.
I'm afraid.
-Don't be. It's just a check... -A check.
-And later?
Later, it depends. If he has to intervene you, then he will sedate you.
No, no.
Well, we'll see...
For the moment I’m very happy because you haven’t come pinkish.
-Right? -Right. You look very good.
I can see you look after yourself.
Hold my hand, sweetheart.
She's here again.
OK...
See you later.
Well, Cris, you are at home.
Let's see...
-But too long ago? -No. Only a day ago.
-This dish is only cooked in Andalucía. -It's very tasty.
I'm not going to say anything.
At the bottom of Kilimanjaro, everyday, a young pharmacist wakes up.
Her name is Mafalda and, like Quino’s character,
she also challenges the world’s status quo.
Mafalda came to Moshi
with the determination of improving the lives of albinos.
With her colleagues, Lea and her albino assistant Grace,
she prepares a little production of lotions.
Giving, for free, a photoprotective lotion to more than 2000 albinos.
There is no local production of sunblock lotions in all East Africa,
because, who needs sunblock here?
Just the people with Albinism who are rejected, poor...
Thus, our role is very important
because we are the first, actually the only ones that produce it
and also distribute it for free.
We have started in Tanzania but our intention is to grow.
Mafalda walks hundreds of kilometers through convoluted pathways.
Difficulties don’t matter.
Her goal is to carry these lotions of hope to the albinos
who live in the isolated villages of Tanzania.
Hello!
Hello! Wow!
-How are you? -Good.
Where do you work?
-In the field. -In the field?
Very close or far away?
Close, but also far... Come with me and you will see.
-I crop beans. -Beans? Of what do you...?
-Bananas. -Bananas? Really?
-Is it far away? -No, here.
It's very close. It's not far away.
There, there.
MUREMA FEBRONIA'S HUSBAND, FARMER
And the lotion. Do you apply it to yourself?
-The lotion's finished. -It's finished.
When I feel bad, it hurts so much and it itches.
FEBRONIA FARMER
Many times I don’t see very good and I have sores in all my body.
Since right now you don’t have the lotion...
-Twice a day. -Twice a day.
-In the morning and at night. -Not at night.
There is no sun at night.
-At noon. -At noon.
Use the lotion in the morning because there is sun.
-Yes. -OK.
At noon and before you leave the house.
Many times when they give us the medicines, the lotion,
and, when they burn the moles two or three times, we improve
and recover.
The problem emerges after the operation,
after getting the moles burnt...
because we don’t have the medicines
we need in order to relieve the pain.
For that reason we lose the hope
to undergo surgery again.
You have to apply the lotion on your forehead, neck, ears...
-On your hands. -Hands.
Face... And also on your lips. Everyday.
-OK. -Everyday, how many times? Twice...
-Twice a day. -When?
-In the morning and at noon. -Not at night.
-At night you only wash your face. -Wash my face.
Often people pat our backs and say:
"You are there, helping and trying your best". But for me...
MAFALDA SOTO PHARMACEUTICAL AND COOPERATING
it is not charity, it’s not help, it’s an exchange
and I always feel that I receive much more than I give.
-Of the lotion. -Yes.
Don't forget to apply it.
-A leaflet. Can you read? -Yes.
The information is in Swahili.
The lotion is made in KCMC.
-Here you have. -Thank you.
-OK? -OK.
-Thank you very much. -Thank you so much.
With our lotion we don’t want to reach
people from Moshi, Arusha or other cities.
We want to reach the vast majority of people
who live in the rural areas, those who live out of what nature gives them
and would not have access to these lotions otherwise.
Work in Moshi starts early,
barely with the clarity of the day.
Long days that allow them to improve and save lives.
I come from Dar es Salaam. I came for the treatment.
I came by bus.
TESHA FABIOLA UNEMPLOYED
I was hoping to get a good treatment
so that I can go back to my previous life.
I live a very hard life because...
I have many unmet needs like lack of food.
So, I have to do little businesses.
On the other hand, I face the rejection of citizens.
I have much pain... from the burns.
Little injuries that are hard to bear.
And those two there. And Luis keeps...
-Supervising the situation. -... coming and going
and we spend more time with them.
-This way it's better. -It will be 20 of us here...
If necessary, we can use the gurney.
This doesn't have...
What happens is that albinos have
-a thick skin. -Yes, it's very thick.
The skin is very thick and can hardly be mobilized.
-If we need some more... -We can twist it a little.
-Sure. -We can wait...
and twist it a little, maybe. We’ll see how the two of us can do it.
-Yes. -We'll wait a little.
For the patients, Pedro and his team are the last resort.
In an existence marked by ingratitude,
they are the hope for a new life.
-We're going to...
have one of the local dermatologist performing surgery
under our supervision.
My name is Patricia. I am from Madrid.
We come every year to try to collaborate,
to try to help...
PATRICIA GARCÍA NURSE
...these people who need it.
-I'm a nurse. -Patri.
Our mission is to help and favor...
albinos as much as we can.
The figure of the nurse is not so recognized here.
She is 'Sister'.
She is the nurse they have here in Tanzania.
He seems like a surgeon of Mohs.
-But he's skilful. -Yes, he is.
-What do you think about the edges? -Very good.
-I think that he... -I think...
He has adjusted very well the margins on the edges.
Yes, he's very careful.
The operating room became too small.
Local doctors attend to each step,
each explanation, each teaching.
For them, the time we spend here is the time for the training they have
during all the whole year.
That is why they live it...
in a very committed way.
This patient had a basal cell carcinoma in the right malar region
LUIS RÍOS DERMATOLOGIST
and we have performed surgery to remove the tumor.
Benjamin did it,
he is a junior resident in the second year,
here, in the RDTC.
He has done it very well,
in the sense that we have removed the full tumor.
It was a bleeding tumor that produced a lot of pain and infections.
That part is going to disappear from her life
and she will just have to come a few times
for healing and to get the stitches removed.
From that moment onwards, she will only suffer
some minor discomfort
due to the tension on the scar, but it will be very mild and tolerable.
All this incredible work and hectic pace that we see these days
in the Regional Dermatology Training Center would have never been possible
without the figure of the German philanthropist, Henning Grossman.
HENNING GROSSMANN DERMATOLOGIST, CREATOR OF R.D.T.C
I’m teaching him to administer...
LUIS GONZÁLEZ ANESTHETIST
local anaesthesia.
And to look for the better plane. To become familiar with them.
This is a pretty significant wound and, thus,
it is more complicated.
We’re showing him what plane he has to do and how to do it.
And he is doing a very good job.
BENJAMIN ASYAGO RESIDENT DERMATOLOGIST (KENYA)
We are by their side to let them know...
that even if we don’t speak the same language,
that we have... we are...
close to them, to relieve their pain, because it is discomforting.
That closeness reassures them, calms them down, gives them peace.
Hey, Daudy, is that the woman Grossmann was talking about?
-No. -Is it someone already admitted?
No, I’m not afraid. I’m used to it.
I even had a caesarean...
to have more children. I’m used to it.
ZAKIA MOHAMED FARMER
She has the face full of tumors and pre-carcinogenic lesions
that turns into tumors if you don’t remove them.
PEDRO CONTI PLASTIC SURGEON
She has all possible stages of the disease.
From early lesions, precancerous to full cancers.
We have to do everything on her.
Now we are reaping the fruit.
We see that there are
trained specialists, dermatologists trained to do the skin cancer surgery
with the highest quality standards, similar to how we work in Spain.
In Dar es Salaam, the administrative capital of Tanzania,
we know an organization that fights for the rights of the albinos.
Its name is 'Under the same sun' and Mafalda took us there.
Welcome.
Thank you.
His representative Gamariel tells us about his fight to ensure
the security of the albinos.
GAMARIEL MBOYA, OPERATIONS MANAGER OF 'UNDER THE SAME SUN'
They chase off, mutilate and kill these people
for their physical characteristics.
A profitable business that has converted albinos
into an item, a market place around these barbaric acts
in which their body parts are being sold for a price,
as if they were poultry for human consumption.
Bring me a leg, bone... hair and an albino's hand.
How can the hair help?
We’ll mix the hair with a magic potion.
And the Albino’s hand?
We use the potion there for the fishing nets.
And the legs?
They will help with the mining business.
Now, if I cannot bring those body parts, will you be able to help me?
I can’t do those things on my own, you know, I’m a woman.
There are ways to do it...
There’s people that can bring these body parts for you.
We have albinos in the area...
and we can get them.
How much for the hands? And for the leg and the hair?
I’ll need other sorcerers to find out...
and I’ll call you with the price.
CANAL SUR NEWS 7TH OF APRIL 2009
The man that you see on the screen is seeking political asylum,
but to run away from sorcerers.
He arrived at Canary Islands on a dugout canoe last March 29th
from Benin. He’s name is Mozy and he is 18 years old.
Nature gave this black man a white skin
and that made him very much desired
for sorcerer’s rituals in the African Continent.
He seeks asylum fearing being killed in one of those rituals.
Next week, the Refugee Committee will study
his unusual application, although it has already anticipated
that it is protected by the Geneva Conventions.
It was true that he fled
from death and actually he was a person that,
based on the social group that he belonged to,
in this case, based to his physical characteristics, albino,
could die and be chased off.
That is why we granted him political asylum.
There was a legal basis for it...
and I must say that I was quite glad to do it.
In the past, it was believed that...
FORMER MINISTER OF INTERIOR
they were abnormal people, abnormal beings that only brought disgrace.
But...
That situation has changed over time
but only for the worse, now they are considered talismans.
First they were rejected and now they are chased off
to kill and use them...
What we have to do is prosecute them, prosecute them and defend the albinos.
That is why, if they come to Europe, we have to grant them political asylum,
the way we did in Spain.
I think it is good to talk and know about it.
I think it is also good that International Organizations
are making decisions about it.
All or most of what albinos suffer in Africa, or in other regions,
is ignorance...
lack of culture...
and stupidity.
In the Regional Dermatology Training Center the work doesn’t stop.
Unfortunately, not all cases have a solution.
A horrible story comes to the hospital’s rooms.
The xeroderma pigmentosum.
A genetic mutation, like Albinism,
in which the skin has no defenses against the sun.
Causing an extreme and fast skin cancer.
It is hardly possible to believe in a God or in a fair being
when you see a case like this.
Cancer spreads in her little body.
She is a kid who suffers XP.
A genetic condition...
that... produces...
very fast cutaneous tumors.
Can she...?
-Take a look at this. -This will get infected.
This will take us the entire morning, all morning.
-This girl is going to die. -Luisito?
This means great suffering to her. Her parents are going to spend money
for nothing, because...
it’s my opinion, I don’t know. If she has no nodes, it’s useless.
She has just one node.
But her head is full of tumors.
The little girl we have seen has multiple lesions of skin cancer
in her face and in her eyes...
She was blind and...
we have been considering whether to operate or not,
because her life expectancy is very short.
This is moving...
This is moving and the rest...
we can clean it. I think it's worth it.
I don't...
We can do prophylactic surgery.
We can remove the bigger tumors.
-Yes, we can. It's easy. -Yes, the periosteum.
-Let us... We'll do it. -We can open here a little.
She is going to die soon.
She’ll live a maximum of a year.
Performing surgery on her will only make her suffer
and her parents will waste their money for nothing.
As I see Medicine,
we have to take care of other cases which are more likely to succeed.
If we were in our country,
after the main surgery will come another one,
plus the post-op care.
Here the problem is that we are leaving
in about two weeks. Therefore...
Who will take care of her? How will they do so?
Will they have the money to buy the drugs to prevent infections?
There are many things to take care of, it’s not only surgery.
In Africa resources are scarce.
They have few possibilities.
In Spain there is a chance, some miracles happen.
Cristina came to our lives totally unexpectedly.
We got an email from a friend asking us
to process a permit for a girl...
to be treated at the Gregorio Marañón Hospital.
The tumor had practically not been treated.
It had a tremendous evolution.
PLASTIC SURGEON
It was invading part of the neck,
the face and the base tissues of the skull.
It was scary.
ELENA CELA ONCOLOGIST
We have never seen before...
such a deep and large lesion.
It was probably producing an awful lot of pain.
I told my friend:
"We have obtained the permit and you can count on us for anything you need".
And, all of the sudden, we realise that there was no one to stay with Cristina.
So, that very same day, I stayed at the hospital.
It was 11 tough months.
Especially for her.
Truth is that...
JUAN ANTONIO SANTOS RADIOLOGIST
we have never seen a case like this before.
Not in my experience at the hospital.
But she was a very brave girl, you could see she had suffered a lot.
Since the beginning of the condition
she had accepted the pain with resignation,
but it must have been awful
because the disease was literally eating up all of her tissue
until reaching the brain.
Despite it all, she was...
calm, resigned...,
and ready to try all.
It is true that they told us first:
"How come you bring a dying girl to us, to do a huge investment?".
"Why not investing on someone
who has a chance?".
The problem was that the size of the tumor which,
according to the radiology tests, was very big.
It was practically reaching the vertebrae.
Then, on the multidisciplinary meetings, the main concern was
whether to operate directly
or to use chemo and radiotherapy to reduce the size of the tumor first.
That is what we ended up doing and we were lucky
because chemo and radiotherapy reduced the size of the tumor.
It was necessary to try
and make operable something that was, in principle, untreatable.
Still, it was a very big tumor.
And the ENT and the plastic surgery teams felt overwhelmed
for the age of the patient and the structures that had to be removed.
From the emotional point of view,
it was a scary surgery.
We only had one opportunity.
If we failed,
Cristina had no more chances.
And we were facing death.
Not only her death but wondering
if so much suffering was worth it, to end up dying.
I even said once: "I hope... I hope she...".
"I hope she dies at the operating table".
Because I thought she could not be saved at all
so, why so much suffering?
Then you get in contact with the paediatric oncology ward,
where we have met so many children who have ended up dying.
It has been a very tough experience,
but I’ll do it all over again.
It was the foster parents who one day,
in one of our practices, started counting the number of specialists
that had participated in Cristina’s treatment.
And there were 16, 16 specialised clinicians.
For 11 months they never allowed us to think that she could be saved.
I said: "I just hope...".
"I just want her to...".
I don’t know why I get so emotional if she is alive.
"I want her to enjoy some years of childhood,
to play, to have a life like the rest of the girls her age.
Here or there. But healthy.
In Cristina’s case,
radiotherapy saved her life.
This other photograph is from...
the first treatment that she received.
Radio and chemotherapy, and Cristina looks
like a patient on these types of treatments.
She is on her bed, looking at a food book,
because the poor thing could not have...
such a varied diet in her country.
The combination of the radiation
and the sterilization of the area allowed us
to extend the healing of the affected area.
Because every time we had to clean the area and change the dressings,
the skin was raw.
We had to sedate her,
otherwise, It would have been impossible to do the treatment.
Another additional problem that we faced with Cristina’s case
was the removal of the facial nerve.
This is the nerve we use to move our faces, for mimicking,
the one that gives us our unique expression.
She says she was born beautiful
because her mother was not in a hurry to deliver her.
And it is true, I think she was...
is beautiful.
I think she is beautiful.
But we had to tell her that,
for sure, she was going to suffer facial paralysis.
It was complicated. And the first thing she said, and it shows how strong
she is: "You knew about this and you didn't tell me?".
"Well, I’m not undertaking surgery, no way".
"People will run away when they see me".
I couldn’t say anything.
I was speechless. Telling that... to a teenager.
And the nerve had to be sacrificed.
And the family was well informed about the problem.
But that was not the most important problem
that Cristina had to face.
The most important problem was saving her life.
Her injury smelt very bad...
and she had already felt rejected before coming.
She had high hopes of returning fully recovered,
because at that point in time everything seem to be working out fine
and when we got to the car, she stared at me and said:
"Fine, my face will be twisted but I’m going to be alive".
Then I, well...
See how emotional I get now.
Then I was driving but I couldn’t see anything, I was pouring crying.
However, over the months we noticed
she was mimicking and presented some movement on her face.
It was a great surprise and we were extremely happy.
Everything went well.
It went well.
Cristina.
-How are you? How are you doing, honey? -Good.
Well, when you are caught in this type of situations...
it is true that luck plays a role,
but the experience and...
and the team... knowing that you have people ready to do it...
I think that is what has brought about the success in Cristina’s case.
-Cristina, right? -Hello.
-How are you? -Good.
She always behaved with determination. She really wanted to live.
The tremendous dedication of the team of clinicians
and, also, very especially, Carmen’s dedication.
Come on. Set the table, girls.
She was fully devoted, she was totally devoted to her.
And all of them together have achieved the miracle of having Cristina alive
and fully healed.
Cristi, you didn’t like Spanish food before.
Not at all.
-Spanish omelette.
-I remember you didn't like it. -I really didn't like it.
And to us, that is how Cristina became part
of our family. An unexpected daughter.
She came...
in only 24 hours, we didn’t have to wait 9 months.
-More! -Too weak!
-Great! -But you are now 3 years old...
Cris thought trolls could come and visit.
-True. I remember that. When she came, she spoke a lot about trolls.
-She was always trying to scare me. -Same here. I was kind of scared...
I was really scared about them.
I prefer to sleep with my door closed.
Just in case, of course.
Whose job it is to fight against skin disease.
Today we are happy
to be together in 'Alarikisi'.
This project was started
in the year 1992.
This project was started
in the year 1992.
To educate all albinos
in the country of Tanzania.
To educate all albinos
in the country of Tanzania.
TUMAINI, THE CHILD WHO WANTED TO TURN OFF THE SUN
INSPIRED BY A TANZANIAN STORY
TUMAINI, THE CHILD WHO WANTED TO TURN OFF THE SUN
Tumaini dreamt about evil sorcerers abducting him
to cook his bones at the crack of dawn.
"The albinos under the sun will always be under my spell",
said the sorcerer.
Thus, he decided to start a trip to the peak of Kilimanjaro,
to turn off the sun there.
This way, no albino kid will ever be damaged by the sorcerers
or by the rays of the sun.
At sunset, he met a fairy.
She said that the sun could not be turned off,
but gave him a magic lotion that would protect him.
Next day, Tumaini met a wise man.
The wise man could not understand why Tumaini wanted to turn off the sun.
But he gave him something helpful.
Tumaini understood that with the lotion and the hat,
the sun could no longer damage him, thus he could be healthy
to fight the evil sorcerers.
Years went by, Tumaini grew up, becoming a master
and an example to all the albinos worldwide.
I've been...
very lucky..., undoubtedly,
to live a moment
SALIF KEITA ALBINO SINGER
and in a...
environment where I've been very protected
by my family.
That's how I could avoid being sacrificed.
However...
I cannot forgive myself for not going to school.
Because I couldn't carry on with my studies.
I was lucky to start my music career.
Hadn't I been able to, it wouldn't have been this easy.
There are some traditions
that turn albinos' lives into nightmares.
It's all problems.
They go through places
where people spit on them.
They are truly discriminated.
Albinos are also hunted.
They are chased off and sacrificed,
and their body parts are sold as if they were animals.
Even their blood is sold.
It's...
very difficult to explain this at times.
But Salif is not he only example for albinos.
In other areas of the world an albino can be
an icon of success, modernity, beauty and fashion.
Shaun Ross represents in fashion...
something that is strong.
He is...
the first black albino top model in the world.
I was in New York, at the Feria Project.
Am I seeing right?
It's Shaun Ross!
He is wearing one of my garments.
Shaun Ross practically jumped on me.
And seeing Shaun Ross in my stand,
trying on my clothes...
He told me excitedly:
"Take me to Madrid,
I want to work for you".
On his side, his special features are linked to genetics,
because being a black albino has to do with certain genes, right?
It’s an alteration that makes you different.
But difference makes you exquisite, doesn’t it?
He has... his own limitations,
but they are always highlighted.
His problems with his eyesight...,
his anatomy...
have not prevented him from...
working with Beyoncé, Katy Perry...
Right now, he is a member of the jury in American Top Model.
He is a reference... He is great.
He is different, he is unique.
He is one of the most...
professional and humble people...
One of the most...
Well, have you seen him now?
He is loving...
and grateful.
And... with regards to Etxebarría,
being able to count on him to be
the flagship of the brand in the USA...
can give him endless profit.
Come. Let's go to make-up.
He is a model that you either love or hate.
He’s such an extremely special person.
Normally all models have an item, something peculiar.
He’s peculiar himself.
Can we get our picture taken?
I remember he told me he didn’t like to show his hair,
because it is very white
in contrast with his black man features. It was too highlighted.
You could see everyone turning around,
with the cameras, the mobiles
and the gossiping.
I think no one gets used...
to something like this, because they don't stare...
Not as if you were a worshiped celebrity,
but rather because you are a freak.
Having a job is vital to fight discrimination.
Valeliani Lukasi knows it very well.
At the age of 29, he makes a living out of carpentry.
My name is Valeliani Lukasi.
I work as a carpenter.
VALELIANI LUKASI CARPENTER
I’m a machine operator.
I work to earn money
for me and my family.
I do play, who says I don't?
Tell them to bring a ball.
I hit the ball like this. Even with my head.
I work as a machine operator.
I know how to drive almost all the machines.
But sometimes to drive them...
Well, you have to be intelligent to operate them.
Otherwise, you can end up suffering an accident,
like cutting your fingers, the hand
or damaging your stomach.
I feel lucky to have got a job here.
But, in order to work, others depend on their bosses.
And in many places you can bump into someone who tells you:
"No, you can’t work here".
Because everything depends on the colour of your skin.
They are used to working with black people
and not so much with white people like us.
That is why getting a job can be a problem.
We start working at 8 a.m. and finish at 5 p.m.
When I finish I go straight to play
with my team, Albinos United.
Valeliani is a member of a very special soccer team
made up fully of albinos.
OSCAR HAULE FOOTBALL COACH
Spread the lotion on your arms
and on your face.
Today the Albinos United football team has
a very special surprise. A unique token.
These clothes are not second-hand like the ones you buy.
They have been sent to us from Europe.
Each one in a different sack, well presented.
Now, this is from Real Madrid.
And this one... from Barcelona.
Thank them.
Here you have.
Here it goes.
The history of the doctors ends in Tanzania.
One diploma that stands for two weeks of work, effort, memory and life.
Maybe they recognized us.
We are the same ones that started coming at the beginning.
We keep on coming. We are hooked up.
This helps to establish professional, trust and mutual respect links.
We all learn from each other.
And we also have personal links, which are very gratifying.
Both with the colleagues as well as with the patients.
In Africa will remain the hundreds of saved lives,
the knowledge and the hope.
With them, in their hearts, they take back the experiences.
The Albino United is a team that can only play at night
because of the characteristics of their players.
Just the moon and the light of a billboard lighting the training session.
The lack of resources does not prevent
these kids from enjoying playing around a ball,
while they become an example for society.
We are normally expected to play our matches in the morning...
ALBINOS UNITED PLAYER
...but with our skin’s condition
and the sun is so strong in the morning,
we have to wait until the evening.
Once the evening comes, we can train.
I’m very happy, because we didn’t have...
an albinos team before.
People saw us and thought we could not play,
or thought we weren’t normal, just like them.
I really thank God
and all the people who have come to support us
and have given us strength.
And for allowing our little kids...
to play here.
Bye.
PIRINEOS SUR FESTIVAL
To me Cristina is the mere reflection
of that inner strength that can overcome everything.
CRISTINA'S STEPSISTER
It is true she has been medically healed
and it is also true that she has had full family support.
After all, if she doesn’t want to move forward the ship sinks.
Someone who had some months lefts to live
and, suddenly, has a life perspective...
That amazes me. That shows her perseverance.
And there she is, brightly smiling and looking forward.
And I love it, because it is always so swift with Cris.
Incredible, because at the end she is thousand miles away
in a different context and I realize that we are...
one, you know? At the end...
there are no differences between us.
So, she is an example, isn’t she?
I know there is a reason why she is there,
so that each one of us can learn something.
Because...
things like that don’t get to your life out of the blue, right?
It’s a learning experience. That’s how I see it.
I’m a black man.
My skin is white.
And I really like this.
It is the difference that is beautiful.
I'm a white man.
My blood is black.
And I adore this.
It is the difference that is beautiful.
Life will be beautiful.
Each person will find happiness in honor.
Life will be beautiful.
-How are you? -Good.
Thank you so much, I'll treasure it.
-Have lots of courage... -OK.
-...and lots of strength. -Thank you, thank you.
TO MY PARENTS
IN LOVING MEMORY OF JUAN ANTONIO SANTOS
AND MMARI HELGA EUDAIMA