April 23, 2025 • 54 mins
In this powerful episode, Josh and Sarah welcome Peter Ogik, Executive Director of Source of the Nile Union of Persons with Albinism in Uganda, who shares his personal story and advocacy work.
About our guest: Peter Ogik was born and raised on an island in Lake Victoria, Uganda. As the first person with albinism in his community of about 600 people, Peter faced discrimination from birth but was fortunate to have supportive parents who advocated for him, especially in school settings where he initially struggled due to bullying and visual impairments associated with albinism.
Key topics discussed:
Personal experiences with discrimination: Peter shares how he was called "a thing" rather than a person, and how children were told not to sit near him because of harmful myths.
Educational challenges: Teachers initially placed Peter at the back of the classroom despite his visual impairments until his father intervened, leading to improved academic performance.
Dangerous misconceptions: Peter survived three kidnapping attempts by those seeking to harvest his body parts for witchcraft, based on the false belief that they bring wealth.
Health challenges: Persons with albinism face high risks of skin cancer, with over 90% dying before age 30 without proper protection and care.
Women and girls with albinism: They face additional challenges, including sexual violence based on the myth that intercourse with a woman with albinism can cure HIV/AIDS.
Advocacy work: Through his organization, Peter works to:
Educate communities and change harmful perceptions
Provide mobile skin clinics and sun protection
Train teachers to better support students with albinism
Advocate for policy changes like tax exemptions on sunscreen
Signs of progress: Peter notes how community attitudes are changing, with more persons with albinism now graduating as doctors, lawyers, engineers, and other professionals.
International Albinism Awareness Day: This UN-recognized day (celebrated since 2015) has become a powerful platform for education and policy influence in Uganda.
Resources mentioned:
Source of the Nile Union of Persons with Albinism (SNUPA)
Advantage Africa, a partner organization since 2013
This episode highlights how education and advocacy can combat deadly superstitions and improve lives for marginalized groups. Peter's message is one of resilience and hope: "I can't wait to see the tomorrow whereby a person will not define me by my appearance, but will define me by my abilities."
Source of the Nile Union of Persons with Albinism
International Albinism Awareness Day Facebook Page
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
I can't wait to see the tomorrowwhereby a person will not define
me by my appearance, but it willdefine me by my abilities.
Welcome to Witch Hunt Podcast. I'm Josh Hutchinson.
I'm Sarah Jack. Today we bring you a powerful
conversation with Peter Odig, the Executive Director of Source
(00:21):
of the Nile Union of Persons with Albinism in Uganda.
Peter shares his personal journey growing up with albinism
on an island in Lake Victoria and the discrimination he faced
from an early age. Your eyes are going to be opened
as Peter describes how myths andmisconceptions about albinism
have led to violence against people with the condition,
(00:42):
including kidnapping attempts and ritual killings based on the
false belief that their body parts possess magical powers.
He shares that he has survived kidnapping attempts.
Peter also discusses the severe health challenges faced by
persons with albinism, particularly skin cancer, which
claims many lives before age 30.Women and girls with albinism
(01:04):
face additional hardships, including sexual violence rooted
in harmful superstitions. Despite these challenges,
Peter's stories ultimately one of hope and resilience through
his organization's advocacy workin partnership with Advantage
Africa. Attitudes are changing, schools
are becoming more inclusive, Healthcare is improving and
(01:25):
people with albinism are entering professions previously
close to them. Join us as Peter Ogic shares how
education and awareness are transforming lives and
challenging dangerous misconceptions in Uganda and
beyond. Welcome to Witch Hunt podcast.
Please introduce yourself and tell the audience a little bit
(01:48):
about yourself and your background.
Wow. Thank you so much.
It's such a great honour to be on this broadcast.
Akita Olgig is my name. I was born and raised on Kisma
Island, one of islands in Ugandafound on Victoria.
And yeah, right now I work with an organization called Social
(02:10):
the Man, you know, persons with albinism as executive directing.
Thank you. What would you like us to know
about your home country, Uganda?Well, first of all, I want to
the viewers and to you to know that even is such a beautiful
country with beautiful landscape, nature, everything
(02:34):
about Uganda, very tasty food and I think it's a very, very
great place to stay. A lot of adventures.
Unfortunately, I think the bad part of it comes when some other
few members see that, oh, there is and years of child being born
and that's where the Hollywood part of it.
(02:56):
But naturally so good people, soupcoming people, so warm and the
loving people. But that's when I started
feeling, oh, I think this is another part of Uganda which
other individuals are trying to portrait, yet it's known for a
good people. Thank you for sharing about
(03:19):
that. Let's start off today learning a
little bit about the challenges of persons with albinism that
they're facing every day. Well, thank you so much.
This was such a good fashion. And maybe I'll start that to
bring my personal experience from the place where I was born
(03:42):
from. As I say that, I was born in an
island on Lake Victoria located in Ginger, Uganda this time and
that's populated by then it was populated about 600 people.
Unfortunately, I was the first one to be born unique born with
(04:02):
another color, which wasn't so much appreciated, welcomed and
my parent as of will be. I think they were misunderstood
and they thought that our familyis of course it was.
How comes two black parents giving birth to a white child
(04:24):
something maybe it was wrong. So here that's when they started
also experiencing the mis associated with albinism.
They thought that maybe it's my mother did something wrong,
maybe because maybe funcated andunderworld would draw a lot of
(04:44):
pressure to my dad to divorce mymother for having giving birth
to a person who's normal, who's not even recommended the person
but was called fame. So oh his three-year old wife
had given birth to that thing. It's a bad moment to the
community. So they forced him.
Thank God that my parent was so bold enough and my dad allowed
(05:08):
so much my mom and said, Oh no, even when people are saying that
you are my wife, I don't believewhat they're saying.
And this is awesome. So they impressed me just like
another child. And of course, I was young,
didn't know anything personal. I started realizing what it
(05:29):
meant or what is it like to livewith albinism.
When I started going to school, that's when I discovered, of
course, at tender age, of course, I tried to play with the
children and I would was so curious to know why am I so
different even from my other peers and what but my parents
(05:50):
used to tell me, Oh no, you're just good just as you are.
But when I went to school, I think that does sweet words,
encouraging words. I found out like really well
like to comfort me because at school it just seemed not to be
good as my parents used to tell me students or people didn't
(06:11):
want to sit close to me. Even teachers never knew how
better they can support me not knowing challenges that comes
with albinism such as visual challenges sort sightedness and
what and instant they used to place me behind.
I used to sit behind a classroomwith my vision impairment.
(06:35):
This meant that I couldn't read properly but I felt like not
even continue with the studies because I was not seeing
anything and children were bullying me, even others the
accent of pitching my skin to find out whether I can cry like
other babies. So found out that the building
was too much to me and I said that I think I I will not
(06:59):
continue to go to school becauseI'm treated like an outcast.
No one want to sit close to me and the teacher there placing me
behind it, but thankful to my parent.
I think they were my number one advocate.
I think they are the reason why I'm standing to continue
duplicating for men in the people because they were there
(07:22):
to stand for me. My dad continued to encourage me
said no my son, you have to study and then knowing one day
you're going to be a great person.
So we need you to study to be able to achieve this.
OK, I continue, but it was this time when it was beyond me, when
children do a lot of main thing that all things like you don't
(07:45):
digest disappear. Psychologically distorted me
because I would sit down and wonder will it be a standard on
the Tuesday the day that I will disappear and whenever first I
would make sure that they put aneye on me so that I may not
disappear women so Colin colour the child that tortured me and
(08:09):
now what my even thinks more worse was I think one day the
teacher gave an homework. Remember I'm sitting behind the
classroom and and I couldn't seewhat was on top, but I never
tried to go the children would yell on me calling me funny
name. He made a funny name and ended
(08:31):
up sometime not being the omens that those kind of exercise
which were given to us when the teacher interpreted me for being
stubborn, not respecting him to do the work.
So he brought a big cane to clean me and I ran out of the
(08:51):
class. I ran to dad, say, you know,
dad, this is what is happening at school.
Teacher, they're not giving me. They're not allowing me to sit
in front of the to see clearly what was written and that
instead of thinking that I'm just stable and want to beat me.
That big cane, that's what I've run had it run out of the past.
(09:18):
So my dad hold my hand and movedwith me to school and interest
to see the head teacher and the head teacher.
I had to summon the teacher and asked him why do you do every
study to Peter. So dad had to even when he
(09:38):
wasn't so much good in science. But he tried to explain because
he has stayed with me, he knows me because it's always see what
I'm what's called. So I told Peter, Peter has a
condition which doesn't allow him to see clearly when he sit
very far from the childboard. If you want him to perform so
(09:58):
well, make sure that he sit in front.
And he tried to tell the fellow student to know that he's just
like else. First.
We know him as our adorable son,so it shouldn't be mistreated.
Wow, that's what like a green light to me and I hope was
renewed and it was like a breakthrough to start performing
(10:22):
so well. Of course, the teacher just
started putting dysmunction. I was just in the class in front
and my performances started generally before that.
You know, students were told that when you sit close to
Peter, Peter will eat you. That thing will eat you.
So even a student didn't want tosit close to me thinking that
(10:46):
there was I'll be eating them because that the myth that the
parent told them thanks to God, when the my dad went there, he
spoke to them and they changed. I started sitting in the front
and when I started sitting in the front, I started performing
so well. And of course in any other class
(11:08):
in the class you find that thosemore other low learners and they
would come always to come for meto help them with some answers
because I was always so attentive and understanding what
it was written. And of course you can't come to
me to ask for answer if you're not my friend.
So they started becoming my friend and being my friend
(11:33):
coming close to close to me. They were saying nothing
happening to them. So they started saying telling
their parent that you lied to us.
You told us when the first of him would be like him, but he's
our friend. In fact, I wasn't getting this
very well impressed, but it's the one who helped me.
(11:54):
So thanks to God that these children started to become my
ambassadors as well, to disprovewhat their parent was saying.
And in me, I'd already understood what it meant to be
bold, what it meant to be misunderstood, what it meant to
(12:14):
be lonely when other thing, but then exclude you to play with
them because of different reasons.
And that's when I started to getinspirations.
That's why I start to get inspirational becoming a leader.
Because I believe that when I become a leader, I'll be maybe
with a voice too, maybe to punish or maybe to report those
(12:36):
who try to mistreat other people.
Just as I was misfitted, being catched and what?
But remember now I started performing so well, that's means
I started getting more friends. So when I stood into leadership,
they gave me the votes. And when I was given the
position into leadership at the school, I tried to create a very
(12:58):
harmless call which is full of common.
It keeps loving. And because that's what all I
needed and that's what I knew that it's what everyone need.
Everyone need to be loved. Everyone need to be accepted,
everyone need to be had. Which I wasn't feeling my then
before. Maybe my parent coming and
(13:19):
advocating to change the story. Well when the time went on of
course as a family at least my community, literally people
around me started to change their bus.
This wasn't all for that. With time our family expanded.
(13:39):
I think I didn't tell you I was the first born my parents and
being the first born, I was bornwith albinism.
So I had more other followers without albinism, like three of
them then the last born or had albinism.
So when he was born, that was another good story for me
neither. Oh, I thought that I was one
(14:01):
only in the world. Now I've got somebody goes like
me by that way by throw those here.
I'd not got any chance to see any other child with albinism or
in Ireland, so I knew that I wasthe owner loan even when yes I
knew I've got 10 level of my fittance, but in me I was still
(14:21):
battling down. How comes the older one with
this kind of condition, which even my parents can't explain to
me how they came about all they may be to encourage me So your
child your precious job done or can't get biological
explanation. How come to me to be different?
(14:42):
Of course I know my dad used to tell me a very funny story.
You see, you see, you see that cow, it's black, but when it
practice the man it's white. So do my God, that's something
you know he used to say yes, butwith little accepting yes, I've
seen cow, but not in people. Wow.
(15:04):
So the life went wrong. However, when I grew up, that's
when I came to understand that it wasn't me only who was
passing through discrimination, abuse in different format.
(15:25):
But there was so many other people with albinism who are not
even given opportunity of being parented by two parents.
Me, I was like enough that my parents allowed me, they adored
me and they did all their best make sure that I go to school.
(15:47):
But when I grew up, that's when I got another.
There are some of those who are kept in kennels that those who
are eaten when visitors visit them that those who are not even
give an opportunity to go to school because they thought that
(16:08):
it's wasted your resources. I believe this in me when I was
trying to go to school, those early ages that told my parents
to take me to school, it's wasted your resources.
So if I started was going to employ me.
So there were a lot of discouragement, but I found the
boldness of my parent. They never give ears to what the
(16:30):
people were telling them. But when I grew up, I found that
wow, there are very many, many of our colleagues didn't get the
chance who didn't receive the land, who are not impressed even
by their own. This was so sad story and the
one of the things that motivatedus to start slow.
(16:55):
It was bad for being apart from myth and misperception.
There were those kind of abuse, thinking that our body parts are
source of wealth, thinking that when they get into your
fingernails, when they cut your hair, when they get to your
(17:15):
head, somebody becomes rich. And always my question were and
why not our parents rich? If we're in a source of wealth,
why our family not rich if we are the source of monies and
ABCD building. So apart from that, again, we
had a challenge of the environment, the sun.
(17:40):
So we found ourselves when you walk through the sun, the sun
would burn you where the burn you.
It becomes a wonder one with time to sit in Cancer.
And the question was where do webelong?
The environment is some harsh but our community is also not
embracing us. Where should we go?
(18:01):
The cancer is killing us but thepeople are hunting us.
Personally, I survived 3 times, can attempt to be killed
personally. Depot Fright kidnapped me to cut
off my head three times and I survived a fan boat for this.
They wanted to cut my head so that they may use it for
(18:24):
witchcraft and maybe get worse according to what they think,
which is the move. We thought that anybody parts of
person with albinism would make someone rich.
This is a total lie which made many of ours to live in fear.
To be honestly, just recently that's when I started feeling
(18:46):
the boldness to walk without seeing behind.
But always I would be so curiousto see the voice following me.
I remember the last time people came and approached my and asked
to give him a lot of millions just to give them my hair
(19:09):
because that would give the people who wanted my hair a lot
of Well, thankfully that my parents, they were also
protective and they summoned this person.
They warned him and ran out of the venue.
That's how I was event because after all this kind of several
(19:31):
attempts and what people were coming to my rescue.
And when my dad, my uncle knew about this guy and they called
him and someone here and of course he had to run out of the
village. And that's how I survived those
other kind of kidnaps. So when we came together as
persons with albinism, with my fellows and colleagues and Nan
(19:55):
and other supporters, that's when we start to see how do we
change the narratives? How do we change this?
How do we reduce the kidnaps, the fear that lives within us?
How do we reduce the cases of skin cancer mongers, persons
without immunity? How would do we create school to
(20:15):
be very impulsive? Just like what I caught as
called and that's what the reasons why we started snow the
source of the Nile meaning of persons without reason.
The name itself being called thesource of the male who believe
that the source of the Nile is the longest river in the world
(20:38):
and would one as the waters of the Nile flows.
We want also the knowledge aboutbeing to fall like that that
person with albinism or whateverthey are in the world, any part
of the world. They shouldn't be killed.
They shouldn't be mistreated. They shouldn't be you know have
(21:00):
an or abused by ignorance of people and that's why we chose
the man and all what I was telling you story and to prove
that communities can change for good.
Some years back I wasn't even accepted to be in the same hotel
(21:21):
with other people wasn't allowedto sit in the same buses or
taxis with people. But through when we started this
organization when we started this advocacy, the perceptions
of people started churning. People even started to admire,
to give birth to children with which we don't have control
(21:42):
over. That's me that yes, I won't say
that everything I've changed, but at least thanks for
changing. As I speak now, parents started
to take their children to school.
We have now different boards with a different field.
We have nurses, we have doctors,we have engineers, we have
(22:03):
lawyers. Just within the period we
started to create awareness but also I used my personal
experience on how I got the challenges to school but also
with the skills which my dad with advocacy skill which my dad
went to the teachers is the same.
(22:25):
So skills which we went to different school to retrain
teachers on how they can supportthe children without the reason
to learn and excel in their education just like anyone else.
And that's how we were able to achieve what everyone achieving
every year. Now at least we get different in
(22:45):
different field. But that's came as result of
empowering teachers on how they can support students with
albinism to be very good in classes, to continue also
sensize fellows without albinismto be always supportive, to know
where and how best they can interact with this person with
(23:08):
albinism. So that's why I'm saying that
yes, there are some myths and misperceptions, but this myths
with awareness without work, whois in is very possible the
stories to change for good. As I say that I used not to be
(23:29):
to be accepted on buses just because people had mixed
feelings saying that oh, when I sit close to him, this is what
will happen. So I started moving door to door
stages of border, border stages of taxis to let them know that
we are human just like anyone else.
(23:53):
Don't think that me didn't a wire with a pale color white
corner in African continent you don't.
It doesn't take my African list.I'm African, my parents African,
so my, my being is not founded or described by my appearance.
(24:17):
No, I shouldn't be described by my appearance, no.
So I went with my teams, with mycolleagues who went to different
school, we went to taxis, we went to different places to the
extent of calling heads of whichdoctors, the traditional heroes
(24:43):
to denounce the myths and misperception about.
I remember we called themselves to come and denounce the myths
that are tied to albinism because they are the ones who
always send people to come and collect the different parts.
(25:05):
But the parts of persons would have been so we had to call them
on the radios. We had to call them on the TV's.
Please tell the people the truth.
Do we have any wealth within us?If really you cut my finger and
they will you cut over my and then anybody part will you go?
How does wealth will begin right?
(25:26):
Somebody to get wealth hard to work hard, but not to think that
our body parts bring wealthy. In fact, this aims and dangerous
and to make live in fear actually that through this kind
of campaign people started changing and we continue to work
(25:48):
and this is what we continue andall this work has been as a risk
of collaborative efforts with our partners like Advantage
Africa. We started working with
Advantage Africa in 2013 and when they came, they met me with
my team that I work with. They sat with us and they
(26:10):
started to analyze to know how do we think the societies will
change and why do they think that really, you know, affecting
so much person would not be anything and what would be the
solutions? And we've been working with them
in very many things from organizing the International
(26:33):
Realism Awareness Day, which hasbeen bringing thousands of
people to come to know about persons, to influence policies.
For example, the Sanskrit lotionimported in the country.
We don't make the Sanskrit lotions in Ubanda and is very,
very key element in protecting our lives from skin cancer.
(27:00):
So with Atlantic Africa will work so hard to make sure that
the wave for us. The Parliament said the
president and all officials to make sure that the wave of the
taxes on the sense commotions And right now as we speak we are
able now to import distance, commotion and provide to
(27:21):
different persons with all across the country.
Through still the support we've been able to reach out every
month we reach out to about 5 to4 districts, 4 to 5 districts
with mobile skin clinics to makesure that we try to mitigate
(27:43):
skin cancer amongst customers. As we go in this mobile clinic
clinics, we go with dermatologist who always bring
the skins and give protective factors against the sun like the
lotions, the white brimmed, the heart, sunglasses and old things
that would persons with lubinismto be safe.
(28:07):
It's so hard that even it's so bad that even some of the
medical doctors used to make their professionalism and their
culture thinking that maybe albinism means somebody
suspension. One of the parent gave us a
story when she was giving a birth to his son with her.
(28:32):
Something shocking happened to her in due process because when
she was pushing the building andthe nurse edit in the middle saw
that it was the baby coming withdifferent skin.
The midwife was in shock, made anoise.
Why is this lady producing This mother said that he almost
(28:58):
jumped off the bed because she also didn't know what she was
producing. It was by God's breast that he
didn't fall off. Otherwise maybe both of them
they would have died behind them.
Imagine this statement coming from a medical practitioner.
So that can give you the level of how lack of information about
(29:23):
free albinism was the first thing if we were not only to
people are not educated by even to certain level people who are
educated, imagine scientists were not having the enough
information about things. So through that work that I
said, Oh no, we need to train more than medical to know this
kind of question conditions. And through that we are
(29:49):
registering changes and there's some changes that we've seen
spoke about school. This has been a sort to be the
one that wanted Africa to make sure that we retrain teachers on
how better they can support students with.
We continue to advocate also allow students with albinism to
put on long sleeved buildings sothat the sun doesn't burn them
(30:12):
and get worn and get days off nursing the worn and yet they
would be missing the classes. So all through this kind of word
look as as what has yielded thisfeats which I've told you about
different grandparents. As I told you that I had a
sister who would like me this mysister she was called Mary.
(30:37):
She was knocked with a cow. But this also say that it was a
tattoo misperception. Somebody wanted just to kill on
the ground and take her, but unfortunately he was rescuing.
So here where comes the myth andmisperception that people with
(30:58):
albinism don't digest disappears.
I remember very well when my sister passed on, people came
and advised my dad not very hard, very far from the compound
of home or else people will comeand dig and take her body.
To be honestly during the time during the day of the burial,
(31:21):
many people came to witness the people without these die.
We hosted very many people who came for the funeral and my dad
out the burial. He had to sleep outside for
about 6 months to make sure thatthe grave is not broken.
So this can tell how people usedto believe things that are not
(31:45):
real. We are so human just like anyone
else. I'll say it.
Being with albinism doesn't makeus to bless you man.
Because sometimes you get surprised when you go to Europe.
You'll not. When you go to Europe, doesn't
you mean that you become a Europeans?
(32:06):
Do they not take care of the Europeans?
And when you go to America, of course you'll not be called
Americans. And when you be in your own
motherland, still they don't affect you because of the
appearance. We are African even when we
carry a different colour. And that's why I said that my
(32:27):
Africanist is not defined by appearance.
I'm just human, just like anyoneelse.
Different colour. That won't be.
Thank you so much for sharing your story that it's really
powerful and illustrates a lot of the challenges that people
(32:50):
with albinism are facing today and also shows the efforts that
are that have to be made. Are there other legal
protections for people with albinism in place?
Well, thank you. Is that an illegal protection
for persons with albinism? When you see the Constitution of
(33:10):
our country, it protects everyone, every human being, and
we are part of the human being. However, other people took us to
be less human just because of appearance, and they find
sometimes many. We've been abused and not being
helped so much with the systems of the law.
(33:33):
You find somebody is kidnapped and they cut off the air and
police will now which kind of case should I file to this
person, to the perpetrator? But this is already attempting
to kill some because he has kidnapped and forcefully cutting
is an assault case. However, we have very many laws
(33:59):
but discrimination than one, butsometimes those laws are not
being put in place and and through those weak laws.
That's why I find even most persons without losing their
interest to report some of the cases.
To be honest, when we go to police, you'll not find many
(34:22):
cases reported. It's few, but people live in
here. People used to live in here.
People they're frightened. People don't feel that safe.
I'm lucky that I stay in town. But when you try to see with try
(34:43):
to make sure that that lot of surveillance come in as under
more as a protection to ensure that I'm safe because I still if
I know some changes, that doesn't go away.
We are neighboring this country,we're neighboring Kenya, we are
neighboring Tanzania where the killings have been happening so
much. We are neighboring Congo.
(35:03):
We are never. So anything can still be even
when we're trying to do our bestto change and to make a further
protective. Thank you so much.
I would love to hear about International Albinism Awareness
(35:24):
Day and how your organization has used that to raise
awareness. And if is that just local
awareness, has that helped with the international awareness as
well? Thank you so much and national
business awareness that we started celebrating it from 2015
(35:45):
and this is the day which the General Assembly allowed so that
we will be celebrating and create more awareness about
beneath and 1st in Uganda, we always do it in the major towns
which attract hundreds, hundredsof persons with algorithm and as
thousands of those without including local, national and
(36:08):
international media. And through this to be honestly
things are changing. I may say that we are not 100%,
but things are changing and badly.
This has been as part of the international Venezuela when
it's deceleration where people come in big number to see
(36:30):
persons with and we use that opportunity to let people
understand that oh, albinism is just a genetic condition is not
contagious. It's not ghost is not just we
use that opportunity to people to understand albinism.
It's just a genetic condition where somebody's born with less
(36:52):
or without melanin on his skin, the eyes and the so there is
nothing different. Somebody listening to my voice,
it has no albinism. We need somebody's with
albinisms. You can't identify that this is
a personal with albinism or thisis of without albinism.
(37:15):
Even the blood you can't do fish.
So we are all all that appearance that may make me look
differently. So we're saying this dent also
we use it as opportunity to speak to different government
stakeholders that influence of people in that country.
For example, been having with the prime ministers, with the
(37:37):
speakers of the par with the members of Parliament where
would question them to be accountable to the situations of
persons with vibbonism. So we think this is a really
contributed by making them try to make other policies and try
to enforce other laws which are sleeping to make sure that we as
(37:58):
persons with albinism, we enjoy our right just like anyone else.
So it has really contributed andnot only within maybe my
country, but this has been helping widely in different
places. You've covered a number of
challenges that are faced by persons that with albinism in
(38:20):
general. Are there specific challenges
you could talk about that women and girls are facing?
Yeah, women, yes, I said that wehave many challenges, but again,
women and girls, they face extrachallenges.
There are a lot of myths that that tie to women's with girls.
(38:44):
First of all, you find many other people have the myth and
misperception that too if personmaybe sleep with somebody with
albinism, a woman with albinism,somebody can get cured of HIV
AIDS and this has put their health at risk using those who
(39:05):
have contacted HIV AIDS just a result of people who can't rape
them. We thought that they would get
cured of HIV and the other result you find they're
affecting this doubts. Some men also come for these
women just to find out, are theyalso women just like another
(39:29):
woman? At the end of it, they leave
them with the carrying pregnancies without any care.
So you'll find them with children.
But when dad is not there, so you find this woman with
albinism struggling, but at the same time had to struggle for
his baby to make sure that he caught his coordinates.
(39:52):
We found many stories like that.And by the way, you'll find our
work with advantage of like I'vebeen trying to address those
kind of issues. There are really very many cases
regarding to that. On addition to that, still you
find even in our work, we find that it's mostly especially
(40:14):
those kinds of ladies. Are the ones who affected so
much with skin cancer because they will have to work extra
time to take care for themselvesbut also take care of their
babies. So they'll have to do all kind
of work, which sometimes expose them to sun and at the end come
(40:35):
they get wounds and wounds whichturn into skin cancer.
To be honest, when you try to find an, our database will find
that it's women's who are mostlysuffering from skin cancer.
I don't say that men, they don't.
But when you say the person and that's kind of the result of
(40:55):
them trying to make sure that they support their families
because they're single parents, most of them.
It's especially heartbreaking because you have all of the
health challenges that come withthe health, but then you know,
(41:18):
these women, these girls have dreams and hopes and skills and
things that they love and want to do.
And when other people make decisions that add extra harm to
them, it can take that away. I find that especially
(41:39):
heartbreaking and how important to educate the population so
that they can start to see them as not magical so that there's
less harm to steal dreams. But then we still have these
other challenges, so it what strong women they are.
(42:02):
They are. They are.
Survivors. Yeah, really strong and yeah it
by the this is one of the thingsthat gives us some time
sleepless night with advantage Africa to see what and how can
we get the resources to continuechanging this narrative.
(42:24):
I know we are trying, but sometimes the resources don't
allow us, but we're trying all what we can to make sure that we
don't bury the dreams of the young women.
And through that that's why we started certain enterprises that
(42:45):
to support them have small businesses to be able to do some
businesses that would not again expose them to my son and the
young ladies who what may be to get more skills in tethering and
other hand skills. We are also trying to support
them so that they can get more skills that will give them money
(43:08):
without struggling so much in the sun.
Already there's ladies. They're super.
All are thriving beyond their lives to make sure that they
support their children. How deeply does skin cancer
impact persons with albinism? What kind of problems does it
(43:33):
lead to? Well, thank you so much for that
question. In fact, when even try to Google
it before giving you the fact finding in organization, find
that above 90 persons with holism die skin cancer before
celebrating there 30 years of age.
Others they die between 30 and 40.
(43:53):
So biggest percentage, I would say that the most kill of
persons with albinism and skin cancer and that became one of
our pillar on health, improving the lives of the health of
persons without albinism buried using the skin cancer cases and
became one of our first project to be done by advantage
(44:14):
everything. And this was supporting the
different quarterly skin clinics.
So every quarter, every after four months we go to the same
people and make sure that this skin does clean the phrase you
know are free from skin. But on top of that to give them
(44:36):
the sanskrotions, giving them the wide brim they had, giving
them the glasses and all thing that protects them.
To be honestly where we were in Busova, where we started from in
Busova sub region, eastern part of Uganda where we had conducted
these clinic clinics of more than 10 years.
(44:59):
We see a very great by the time we started every month would
register many cases of skin cancer.
I would say that by then the rate was about 96%.
You'll find patients whose skinsare really rough and carrying
(45:21):
some pre cancerous solutions andwhat but now as I speak, even
the patient who normally we get skin cancer that out of the soda
sub region, which showed that the skin cancer can be
eliminated if we work on it earlier.
And this is the hope that we have if we continue to do what
(45:45):
we did in the sub region, we'll have cancer free environment for
persons with albinism. If the reason why we expanded
our world to other parts of building that by the way, it's
still not only Uganda, but if I now will provide the sun school
ocean to some part of thousand Sudan and Eastern Kenya.
(46:08):
They come to benefit from these services.
And our vision is to make to make these persons with an
Organism free from skin cancer because it's prevented, can be
prevented if we take the good precautions like which we are
taking in different parts of thecountry.
(46:29):
We believe that one day, one time they would be like those
who saw the separation. However, it's one of the keener
and why skin cancer? This comes back to the first
story which I told you. The adults were not given
opportunity to go to school. I wanted to bring the circle of
skin cancer and poverty among persons with Organism.
(46:52):
The issue is, as I told you thatat earlier passions with
albinism were not given a chanceto go to school because of the
midterm misperceptions attach the condition taking that they
won't make it even when they go to school, so they didn't give
them more sex special the adultsopportunity to go to school.
(47:14):
And when you're not educated, ofcourse to gather money, you will
have to do the hardware, you will have to expose yourself to
the sun. And when you expose yourself to
the sun, there is high risks of getting wounds and skinny
cancers. And that's why that's count that
most persons without be used to die between 3040.
(47:37):
However, through this, we're seeing people growing up older
and older and we think so this has been one of the number one
kill and we're trying all the best to treat those ones who are
sick, but also a major focus in preventing the skin cancer.
(47:59):
And that's why every month we try to go to different districts
across the country to make sure that we prevent them from
getting sleepy. We go to school, we dedicated
them, we try to educate different people.
In fact, here we are up killing the government to continue to do
(48:19):
what it takes to make sure that even the subscription that we
give need to be in the government hospitals.
These are the machines in fact, and that entire country, we are
the ones owning this Kroger machine, but I need them to be
owned in the country. We need to the government to
increase the number of dermatologists so that people
(48:42):
don't struggle to come to us. We need them to get the
treatment wherever they are. So that's our pray in the future
and if that is there, then we'llbe able to fight still
Councilman this person in our community.
Thank you so very much for this discussion and for sharing your
(49:04):
personal story and all the challenges that are being faced,
but also what is being done about them.
I just want to close on asking you.
You talked about how lives are being changed and lives are
being saved through the skin cancer prevention.
Is there anything else? What else gives you cause for
(49:26):
optimism and hope for the futureof persons with albinism?
What it gives me for to be honest, when we see this,
somebody has lost hope. For example, when you see these
people struggling skin cancer, see them regaining back their
lives, it gives me but also the work that we've been doing when
(49:49):
we see where we are and where weare from.
It's helped to clearly give me the picture of where we are
going. 10 years, as I said, wouldn't share the same taxi
opens wouldn't go me. I was like it, but my colleagues
(50:10):
wouldn't go to school. You find many that were abused.
We were not in towns. Most of the children with
albinism were hidden in villages.
And what? But right now the things which
really gives me and gives me more to continue doing what we
(50:30):
do and more so if we're joined by people like Advent in Africa,
people like you were sharing ourstories.
Too many to understand that it'spossible.
The change is very possible. Yeah.
It gives me hope. No.
Yes, we will reach there. We've not yet reached there, but
there is hope. We're seeing it now that we will
(50:53):
reach there by that this. I'm happy that it has been
proved to many other African countries that things can
change. And I know there are some
people, some places where killing the happening, but with
what we've seen, it's very possible things to change, like
what we are doing, calling the traditional heroes to come to
(51:15):
denounce this kind of things, ithelps.
It's helping to change, holding the stakeholders and holding
them accountable and what are they doing?
It makes things to happen. Informing persons with albinism
how better they can care for themselves and letting them know
that your PRS doesn't make you less human, it's making them
(51:39):
more stronger. Seeing these ladies with who are
single mothers struggled becausetheir children, it gives a lot
of if they're big it how about us?
How about me? So all these kind of things
gives me a lot of energy and seethe real picture for tomorrow
(52:01):
and I can't wait to see them tomorrow whereby a person will
not define me by my appearance but it will define me by my
abilities. Thank you so very much.
And before we wrap up today's episode, we wanted to share the
information for this year's International Albinism Awareness
Day, June 13th, 2025. Oh yes, and this year's theme is
(52:25):
really significant. It is demanding our rights,
protect our skin, preserve our lives.
You know, it's shocking that in 2025 we're still seeing
preventable skin cancer deaths in people with albinism.
That's not just a healthcare oversight, it's literally a
human rights issue. Absolutely.
(52:47):
When you think about it, sunscreen isn't just a cosmetic
product for people, especially purses with albinism, It's life
saving medicine. That's why there's big push to
get the World Health Organization to add sunscreen to
their essential medicines list. If you want to learn more or get
involved, albinism advocacy groups are already taking are
(53:09):
already talking about celebrating International
Awareness Day, so be sure to look for social media posts and
share them. Thank you for sharing their
posts and using their hashtags to help expand the conversation.
This is about fundamental rights, the right to health and
the right to light, the two mostimportant human rights, without
(53:30):
which you can have the others. Sometimes the simplest
interventions can make the biggest difference.
This year's theme is really calling on authorities to take
concrete action, demanding that governments recognize that
preventable skin cancer deaths in persons with albinism violate
both the right to health and theright to life itself.
(53:51):
Exactly. They're asking for practical
steps like funding skin cancer screening programs, making
sunscreen readily available, andadding it to The Who Essential
medicines list. And there's a push for better
data collection, too. They want authorities to track
how many people with albinism are affected by skin cancer so
we can understand the true scaleof the problem.
(54:13):
It's about accountability. These deaths are preventable
with the right resources and attention from health
authorities. You for joining us for this
episode of Witch Hunt. Have you subscribed to our
YouTube channel yet? Do that today.
Have a great today and a beautiful tomorrow.
I can't wait to see the tomorrowwhereby a person will not define
me by my appearance, but it willdefine me by my abilities.
Welcome to Witch Hunt Podcast. I'm Josh Hutchinson.
I'm Sarah Jack. Today we bring you a powerful
conversation with Peter Odig, the Executive Director of Source
(00:21):
of the Nile Union of Persons with Albinism in Uganda.
Peter shares his personal journey growing up with albinism
on an island in Lake Victoria and the discrimination he faced
from an early age. Your eyes are going to be opened
as Peter describes how myths andmisconceptions about albinism
have led to violence against people with the condition,
(00:42):
including kidnapping attempts and ritual killings based on the
false belief that their body parts possess magical powers.
He shares that he has survived kidnapping attempts.
Peter also discusses the severe health challenges faced by
persons with albinism, particularly skin cancer, which
claims many lives before age 30.Women and girls with albinism
(01:04):
face additional hardships, including sexual violence rooted
in harmful superstitions. Despite these challenges,
Peter's stories ultimately one of hope and resilience through
his organization's advocacy workin partnership with Advantage
Africa. Attitudes are changing, schools
are becoming more inclusive, Healthcare is improving and
(01:25):
people with albinism are entering professions previously
close to them. Join us as Peter Ogic shares how
education and awareness are transforming lives and
challenging dangerous misconceptions in Uganda and
beyond. Welcome to Witch Hunt podcast.
Please introduce yourself and tell the audience a little bit
(01:48):
about yourself and your background.
Wow. Thank you so much.
It's such a great honour to be on this broadcast.
Akita Olgig is my name. I was born and raised on Kisma
Island, one of islands in Ugandafound on Victoria.
And yeah, right now I work with an organization called Social
(02:10):
the Man, you know, persons with albinism as executive directing.
Thank you. What would you like us to know
about your home country, Uganda?Well, first of all, I want to
the viewers and to you to know that even is such a beautiful
country with beautiful landscape, nature, everything
(02:34):
about Uganda, very tasty food and I think it's a very, very
great place to stay. A lot of adventures.
Unfortunately, I think the bad part of it comes when some other
few members see that, oh, there is and years of child being born
and that's where the Hollywood part of it.
(02:56):
But naturally so good people, soupcoming people, so warm and the
loving people. But that's when I started
feeling, oh, I think this is another part of Uganda which
other individuals are trying to portrait, yet it's known for a
good people. Thank you for sharing about
(03:19):
that. Let's start off today learning a
little bit about the challenges of persons with albinism that
they're facing every day. Well, thank you so much.
This was such a good fashion. And maybe I'll start that to
bring my personal experience from the place where I was born
(03:42):
from. As I say that, I was born in an
island on Lake Victoria located in Ginger, Uganda this time and
that's populated by then it was populated about 600 people.
Unfortunately, I was the first one to be born unique born with
(04:02):
another color, which wasn't so much appreciated, welcomed and
my parent as of will be. I think they were misunderstood
and they thought that our familyis of course it was.
How comes two black parents giving birth to a white child
(04:24):
something maybe it was wrong. So here that's when they started
also experiencing the mis associated with albinism.
They thought that maybe it's my mother did something wrong,
maybe because maybe funcated andunderworld would draw a lot of
(04:44):
pressure to my dad to divorce mymother for having giving birth
to a person who's normal, who's not even recommended the person
but was called fame. So oh his three-year old wife
had given birth to that thing. It's a bad moment to the
community. So they forced him.
Thank God that my parent was so bold enough and my dad allowed
(05:08):
so much my mom and said, Oh no, even when people are saying that
you are my wife, I don't believewhat they're saying.
And this is awesome. So they impressed me just like
another child. And of course, I was young,
didn't know anything personal. I started realizing what it
(05:29):
meant or what is it like to livewith albinism.
When I started going to school, that's when I discovered, of
course, at tender age, of course, I tried to play with the
children and I would was so curious to know why am I so
different even from my other peers and what but my parents
(05:50):
used to tell me, Oh no, you're just good just as you are.
But when I went to school, I think that does sweet words,
encouraging words. I found out like really well
like to comfort me because at school it just seemed not to be
good as my parents used to tell me students or people didn't
(06:11):
want to sit close to me. Even teachers never knew how
better they can support me not knowing challenges that comes
with albinism such as visual challenges sort sightedness and
what and instant they used to place me behind.
I used to sit behind a classroomwith my vision impairment.
(06:35):
This meant that I couldn't read properly but I felt like not
even continue with the studies because I was not seeing
anything and children were bullying me, even others the
accent of pitching my skin to find out whether I can cry like
other babies. So found out that the building
was too much to me and I said that I think I I will not
(06:59):
continue to go to school becauseI'm treated like an outcast.
No one want to sit close to me and the teacher there placing me
behind it, but thankful to my parent.
I think they were my number one advocate.
I think they are the reason why I'm standing to continue
duplicating for men in the people because they were there
(07:22):
to stand for me. My dad continued to encourage me
said no my son, you have to study and then knowing one day
you're going to be a great person.
So we need you to study to be able to achieve this.
OK, I continue, but it was this time when it was beyond me, when
children do a lot of main thing that all things like you don't
(07:45):
digest disappear. Psychologically distorted me
because I would sit down and wonder will it be a standard on
the Tuesday the day that I will disappear and whenever first I
would make sure that they put aneye on me so that I may not
disappear women so Colin colour the child that tortured me and
(08:09):
now what my even thinks more worse was I think one day the
teacher gave an homework. Remember I'm sitting behind the
classroom and and I couldn't seewhat was on top, but I never
tried to go the children would yell on me calling me funny
name. He made a funny name and ended
(08:31):
up sometime not being the omens that those kind of exercise
which were given to us when the teacher interpreted me for being
stubborn, not respecting him to do the work.
So he brought a big cane to clean me and I ran out of the
(08:51):
class. I ran to dad, say, you know,
dad, this is what is happening at school.
Teacher, they're not giving me. They're not allowing me to sit
in front of the to see clearly what was written and that
instead of thinking that I'm just stable and want to beat me.
That big cane, that's what I've run had it run out of the past.
(09:18):
So my dad hold my hand and movedwith me to school and interest
to see the head teacher and the head teacher.
I had to summon the teacher and asked him why do you do every
study to Peter. So dad had to even when he
(09:38):
wasn't so much good in science. But he tried to explain because
he has stayed with me, he knows me because it's always see what
I'm what's called. So I told Peter, Peter has a
condition which doesn't allow him to see clearly when he sit
very far from the childboard. If you want him to perform so
(09:58):
well, make sure that he sit in front.
And he tried to tell the fellow student to know that he's just
like else. First.
We know him as our adorable son,so it shouldn't be mistreated.
Wow, that's what like a green light to me and I hope was
renewed and it was like a breakthrough to start performing
(10:22):
so well. Of course, the teacher just
started putting dysmunction. I was just in the class in front
and my performances started generally before that.
You know, students were told that when you sit close to
Peter, Peter will eat you. That thing will eat you.
So even a student didn't want tosit close to me thinking that
(10:46):
there was I'll be eating them because that the myth that the
parent told them thanks to God, when the my dad went there, he
spoke to them and they changed. I started sitting in the front
and when I started sitting in the front, I started performing
so well. And of course in any other class
(11:08):
in the class you find that thosemore other low learners and they
would come always to come for meto help them with some answers
because I was always so attentive and understanding what
it was written. And of course you can't come to
me to ask for answer if you're not my friend.
So they started becoming my friend and being my friend
(11:33):
coming close to close to me. They were saying nothing
happening to them. So they started saying telling
their parent that you lied to us.
You told us when the first of him would be like him, but he's
our friend. In fact, I wasn't getting this
very well impressed, but it's the one who helped me.
(11:54):
So thanks to God that these children started to become my
ambassadors as well, to disprovewhat their parent was saying.
And in me, I'd already understood what it meant to be
bold, what it meant to be misunderstood, what it meant to
(12:14):
be lonely when other thing, but then exclude you to play with
them because of different reasons.
And that's when I started to getinspirations.
That's why I start to get inspirational becoming a leader.
Because I believe that when I become a leader, I'll be maybe
with a voice too, maybe to punish or maybe to report those
(12:36):
who try to mistreat other people.
Just as I was misfitted, being catched and what?
But remember now I started performing so well, that's means
I started getting more friends. So when I stood into leadership,
they gave me the votes. And when I was given the
position into leadership at the school, I tried to create a very
(12:58):
harmless call which is full of common.
It keeps loving. And because that's what all I
needed and that's what I knew that it's what everyone need.
Everyone need to be loved. Everyone need to be accepted,
everyone need to be had. Which I wasn't feeling my then
before. Maybe my parent coming and
(13:19):
advocating to change the story. Well when the time went on of
course as a family at least my community, literally people
around me started to change their bus.
This wasn't all for that. With time our family expanded.
(13:39):
I think I didn't tell you I was the first born my parents and
being the first born, I was bornwith albinism.
So I had more other followers without albinism, like three of
them then the last born or had albinism.
So when he was born, that was another good story for me
neither. Oh, I thought that I was one
(14:01):
only in the world. Now I've got somebody goes like
me by that way by throw those here.
I'd not got any chance to see any other child with albinism or
in Ireland, so I knew that I wasthe owner loan even when yes I
knew I've got 10 level of my fittance, but in me I was still
(14:21):
battling down. How comes the older one with
this kind of condition, which even my parents can't explain to
me how they came about all they may be to encourage me So your
child your precious job done or can't get biological
explanation. How come to me to be different?
(14:42):
Of course I know my dad used to tell me a very funny story.
You see, you see, you see that cow, it's black, but when it
practice the man it's white. So do my God, that's something
you know he used to say yes, butwith little accepting yes, I've
seen cow, but not in people. Wow.
(15:04):
So the life went wrong. However, when I grew up, that's
when I came to understand that it wasn't me only who was
passing through discrimination, abuse in different format.
(15:25):
But there was so many other people with albinism who are not
even given opportunity of being parented by two parents.
Me, I was like enough that my parents allowed me, they adored
me and they did all their best make sure that I go to school.
(15:47):
But when I grew up, that's when I got another.
There are some of those who are kept in kennels that those who
are eaten when visitors visit them that those who are not even
give an opportunity to go to school because they thought that
(16:08):
it's wasted your resources. I believe this in me when I was
trying to go to school, those early ages that told my parents
to take me to school, it's wasted your resources.
So if I started was going to employ me.
So there were a lot of discouragement, but I found the
boldness of my parent. They never give ears to what the
(16:30):
people were telling them. But when I grew up, I found that
wow, there are very many, many of our colleagues didn't get the
chance who didn't receive the land, who are not impressed even
by their own. This was so sad story and the
one of the things that motivatedus to start slow.
(16:55):
It was bad for being apart from myth and misperception.
There were those kind of abuse, thinking that our body parts are
source of wealth, thinking that when they get into your
fingernails, when they cut your hair, when they get to your
(17:15):
head, somebody becomes rich. And always my question were and
why not our parents rich? If we're in a source of wealth,
why our family not rich if we are the source of monies and
ABCD building. So apart from that, again, we
had a challenge of the environment, the sun.
(17:40):
So we found ourselves when you walk through the sun, the sun
would burn you where the burn you.
It becomes a wonder one with time to sit in Cancer.
And the question was where do webelong?
The environment is some harsh but our community is also not
embracing us. Where should we go?
(18:01):
The cancer is killing us but thepeople are hunting us.
Personally, I survived 3 times, can attempt to be killed
personally. Depot Fright kidnapped me to cut
off my head three times and I survived a fan boat for this.
They wanted to cut my head so that they may use it for
(18:24):
witchcraft and maybe get worse according to what they think,
which is the move. We thought that anybody parts of
person with albinism would make someone rich.
This is a total lie which made many of ours to live in fear.
To be honestly, just recently that's when I started feeling
(18:46):
the boldness to walk without seeing behind.
But always I would be so curiousto see the voice following me.
I remember the last time people came and approached my and asked
to give him a lot of millions just to give them my hair
(19:09):
because that would give the people who wanted my hair a lot
of Well, thankfully that my parents, they were also
protective and they summoned this person.
They warned him and ran out of the venue.
That's how I was event because after all this kind of several
(19:31):
attempts and what people were coming to my rescue.
And when my dad, my uncle knew about this guy and they called
him and someone here and of course he had to run out of the
village. And that's how I survived those
other kind of kidnaps. So when we came together as
persons with albinism, with my fellows and colleagues and Nan
(19:55):
and other supporters, that's when we start to see how do we
change the narratives? How do we change this?
How do we reduce the kidnaps, the fear that lives within us?
How do we reduce the cases of skin cancer mongers, persons
without immunity? How would do we create school to
(20:15):
be very impulsive? Just like what I caught as
called and that's what the reasons why we started snow the
source of the Nile meaning of persons without reason.
The name itself being called thesource of the male who believe
that the source of the Nile is the longest river in the world
(20:38):
and would one as the waters of the Nile flows.
We want also the knowledge aboutbeing to fall like that that
person with albinism or whateverthey are in the world, any part
of the world. They shouldn't be killed.
They shouldn't be mistreated. They shouldn't be you know have
(21:00):
an or abused by ignorance of people and that's why we chose
the man and all what I was telling you story and to prove
that communities can change for good.
Some years back I wasn't even accepted to be in the same hotel
(21:21):
with other people wasn't allowedto sit in the same buses or
taxis with people. But through when we started this
organization when we started this advocacy, the perceptions
of people started churning. People even started to admire,
to give birth to children with which we don't have control
(21:42):
over. That's me that yes, I won't say
that everything I've changed, but at least thanks for
changing. As I speak now, parents started
to take their children to school.
We have now different boards with a different field.
We have nurses, we have doctors,we have engineers, we have
(22:03):
lawyers. Just within the period we
started to create awareness but also I used my personal
experience on how I got the challenges to school but also
with the skills which my dad with advocacy skill which my dad
went to the teachers is the same.
(22:25):
So skills which we went to different school to retrain
teachers on how they can supportthe children without the reason
to learn and excel in their education just like anyone else.
And that's how we were able to achieve what everyone achieving
every year. Now at least we get different in
(22:45):
different field. But that's came as result of
empowering teachers on how they can support students with
albinism to be very good in classes, to continue also
sensize fellows without albinismto be always supportive, to know
where and how best they can interact with this person with
(23:08):
albinism. So that's why I'm saying that
yes, there are some myths and misperceptions, but this myths
with awareness without work, whois in is very possible the
stories to change for good. As I say that I used not to be
(23:29):
to be accepted on buses just because people had mixed
feelings saying that oh, when I sit close to him, this is what
will happen. So I started moving door to door
stages of border, border stages of taxis to let them know that
we are human just like anyone else.
(23:53):
Don't think that me didn't a wire with a pale color white
corner in African continent you don't.
It doesn't take my African list.I'm African, my parents African,
so my, my being is not founded or described by my appearance.
(24:17):
No, I shouldn't be described by my appearance, no.
So I went with my teams, with mycolleagues who went to different
school, we went to taxis, we went to different places to the
extent of calling heads of whichdoctors, the traditional heroes
(24:43):
to denounce the myths and misperception about.
I remember we called themselves to come and denounce the myths
that are tied to albinism because they are the ones who
always send people to come and collect the different parts.
(25:05):
But the parts of persons would have been so we had to call them
on the radios. We had to call them on the TV's.
Please tell the people the truth.
Do we have any wealth within us?If really you cut my finger and
they will you cut over my and then anybody part will you go?
How does wealth will begin right?
(25:26):
Somebody to get wealth hard to work hard, but not to think that
our body parts bring wealthy. In fact, this aims and dangerous
and to make live in fear actually that through this kind
of campaign people started changing and we continue to work
(25:48):
and this is what we continue andall this work has been as a risk
of collaborative efforts with our partners like Advantage
Africa. We started working with
Advantage Africa in 2013 and when they came, they met me with
my team that I work with. They sat with us and they
(26:10):
started to analyze to know how do we think the societies will
change and why do they think that really, you know, affecting
so much person would not be anything and what would be the
solutions? And we've been working with them
in very many things from organizing the International
(26:33):
Realism Awareness Day, which hasbeen bringing thousands of
people to come to know about persons, to influence policies.
For example, the Sanskrit lotionimported in the country.
We don't make the Sanskrit lotions in Ubanda and is very,
very key element in protecting our lives from skin cancer.
(27:00):
So with Atlantic Africa will work so hard to make sure that
the wave for us. The Parliament said the
president and all officials to make sure that the wave of the
taxes on the sense commotions And right now as we speak we are
able now to import distance, commotion and provide to
(27:21):
different persons with all across the country.
Through still the support we've been able to reach out every
month we reach out to about 5 to4 districts, 4 to 5 districts
with mobile skin clinics to makesure that we try to mitigate
(27:43):
skin cancer amongst customers. As we go in this mobile clinic
clinics, we go with dermatologist who always bring
the skins and give protective factors against the sun like the
lotions, the white brimmed, the heart, sunglasses and old things
that would persons with lubinismto be safe.
(28:07):
It's so hard that even it's so bad that even some of the
medical doctors used to make their professionalism and their
culture thinking that maybe albinism means somebody
suspension. One of the parent gave us a
story when she was giving a birth to his son with her.
(28:32):
Something shocking happened to her in due process because when
she was pushing the building andthe nurse edit in the middle saw
that it was the baby coming withdifferent skin.
The midwife was in shock, made anoise.
Why is this lady producing This mother said that he almost
(28:58):
jumped off the bed because she also didn't know what she was
producing. It was by God's breast that he
didn't fall off. Otherwise maybe both of them
they would have died behind them.
Imagine this statement coming from a medical practitioner.
So that can give you the level of how lack of information about
(29:23):
free albinism was the first thing if we were not only to
people are not educated by even to certain level people who are
educated, imagine scientists were not having the enough
information about things. So through that work that I
said, Oh no, we need to train more than medical to know this
kind of question conditions. And through that we are
(29:49):
registering changes and there's some changes that we've seen
spoke about school. This has been a sort to be the
one that wanted Africa to make sure that we retrain teachers on
how better they can support students with.
We continue to advocate also allow students with albinism to
put on long sleeved buildings sothat the sun doesn't burn them
(30:12):
and get worn and get days off nursing the worn and yet they
would be missing the classes. So all through this kind of word
look as as what has yielded thisfeats which I've told you about
different grandparents. As I told you that I had a
sister who would like me this mysister she was called Mary.
(30:37):
She was knocked with a cow. But this also say that it was a
tattoo misperception. Somebody wanted just to kill on
the ground and take her, but unfortunately he was rescuing.
So here where comes the myth andmisperception that people with
(30:58):
albinism don't digest disappears.
I remember very well when my sister passed on, people came
and advised my dad not very hard, very far from the compound
of home or else people will comeand dig and take her body.
To be honestly during the time during the day of the burial,
(31:21):
many people came to witness the people without these die.
We hosted very many people who came for the funeral and my dad
out the burial. He had to sleep outside for
about 6 months to make sure thatthe grave is not broken.
So this can tell how people usedto believe things that are not
(31:45):
real. We are so human just like anyone
else. I'll say it.
Being with albinism doesn't makeus to bless you man.
Because sometimes you get surprised when you go to Europe.
You'll not. When you go to Europe, doesn't
you mean that you become a Europeans?
(32:06):
Do they not take care of the Europeans?
And when you go to America, of course you'll not be called
Americans. And when you be in your own
motherland, still they don't affect you because of the
appearance. We are African even when we
carry a different colour. And that's why I said that my
(32:27):
Africanist is not defined by appearance.
I'm just human, just like anyoneelse.
Different colour. That won't be.
Thank you so much for sharing your story that it's really
powerful and illustrates a lot of the challenges that people
(32:50):
with albinism are facing today and also shows the efforts that
are that have to be made. Are there other legal
protections for people with albinism in place?
Well, thank you. Is that an illegal protection
for persons with albinism? When you see the Constitution of
(33:10):
our country, it protects everyone, every human being, and
we are part of the human being. However, other people took us to
be less human just because of appearance, and they find
sometimes many. We've been abused and not being
helped so much with the systems of the law.
(33:33):
You find somebody is kidnapped and they cut off the air and
police will now which kind of case should I file to this
person, to the perpetrator? But this is already attempting
to kill some because he has kidnapped and forcefully cutting
is an assault case. However, we have very many laws
(33:59):
but discrimination than one, butsometimes those laws are not
being put in place and and through those weak laws.
That's why I find even most persons without losing their
interest to report some of the cases.
To be honest, when we go to police, you'll not find many
(34:22):
cases reported. It's few, but people live in
here. People used to live in here.
People they're frightened. People don't feel that safe.
I'm lucky that I stay in town. But when you try to see with try
(34:43):
to make sure that that lot of surveillance come in as under
more as a protection to ensure that I'm safe because I still if
I know some changes, that doesn't go away.
We are neighboring this country,we're neighboring Kenya, we are
neighboring Tanzania where the killings have been happening so
much. We are neighboring Congo.
(35:03):
We are never. So anything can still be even
when we're trying to do our bestto change and to make a further
protective. Thank you so much.
I would love to hear about International Albinism Awareness
(35:24):
Day and how your organization has used that to raise
awareness. And if is that just local
awareness, has that helped with the international awareness as
well? Thank you so much and national
business awareness that we started celebrating it from 2015
(35:45):
and this is the day which the General Assembly allowed so that
we will be celebrating and create more awareness about
beneath and 1st in Uganda, we always do it in the major towns
which attract hundreds, hundredsof persons with algorithm and as
thousands of those without including local, national and
(36:08):
international media. And through this to be honestly
things are changing. I may say that we are not 100%,
but things are changing and badly.
This has been as part of the international Venezuela when
it's deceleration where people come in big number to see
(36:30):
persons with and we use that opportunity to let people
understand that oh, albinism is just a genetic condition is not
contagious. It's not ghost is not just we
use that opportunity to people to understand albinism.
It's just a genetic condition where somebody's born with less
(36:52):
or without melanin on his skin, the eyes and the so there is
nothing different. Somebody listening to my voice,
it has no albinism. We need somebody's with
albinisms. You can't identify that this is
a personal with albinism or thisis of without albinism.
(37:15):
Even the blood you can't do fish.
So we are all all that appearance that may make me look
differently. So we're saying this dent also
we use it as opportunity to speak to different government
stakeholders that influence of people in that country.
For example, been having with the prime ministers, with the
(37:37):
speakers of the par with the members of Parliament where
would question them to be accountable to the situations of
persons with vibbonism. So we think this is a really
contributed by making them try to make other policies and try
to enforce other laws which are sleeping to make sure that we as
(37:58):
persons with albinism, we enjoy our right just like anyone else.
So it has really contributed andnot only within maybe my
country, but this has been helping widely in different
places. You've covered a number of
challenges that are faced by persons that with albinism in
(38:20):
general. Are there specific challenges
you could talk about that women and girls are facing?
Yeah, women, yes, I said that wehave many challenges, but again,
women and girls, they face extrachallenges.
There are a lot of myths that that tie to women's with girls.
(38:44):
First of all, you find many other people have the myth and
misperception that too if personmaybe sleep with somebody with
albinism, a woman with albinism,somebody can get cured of HIV
AIDS and this has put their health at risk using those who
(39:05):
have contacted HIV AIDS just a result of people who can't rape
them. We thought that they would get
cured of HIV and the other result you find they're
affecting this doubts. Some men also come for these
women just to find out, are theyalso women just like another
(39:29):
woman? At the end of it, they leave
them with the carrying pregnancies without any care.
So you'll find them with children.
But when dad is not there, so you find this woman with
albinism struggling, but at the same time had to struggle for
his baby to make sure that he caught his coordinates.
(39:52):
We found many stories like that.And by the way, you'll find our
work with advantage of like I'vebeen trying to address those
kind of issues. There are really very many cases
regarding to that. On addition to that, still you
find even in our work, we find that it's mostly especially
(40:14):
those kinds of ladies. Are the ones who affected so
much with skin cancer because they will have to work extra
time to take care for themselvesbut also take care of their
babies. So they'll have to do all kind
of work, which sometimes expose them to sun and at the end come
(40:35):
they get wounds and wounds whichturn into skin cancer.
To be honest, when you try to find an, our database will find
that it's women's who are mostlysuffering from skin cancer.
I don't say that men, they don't.
But when you say the person and that's kind of the result of
(40:55):
them trying to make sure that they support their families
because they're single parents, most of them.
It's especially heartbreaking because you have all of the
health challenges that come withthe health, but then you know,
(41:18):
these women, these girls have dreams and hopes and skills and
things that they love and want to do.
And when other people make decisions that add extra harm to
them, it can take that away. I find that especially
(41:39):
heartbreaking and how important to educate the population so
that they can start to see them as not magical so that there's
less harm to steal dreams. But then we still have these
other challenges, so it what strong women they are.
(42:02):
They are. They are.
Survivors. Yeah, really strong and yeah it
by the this is one of the thingsthat gives us some time
sleepless night with advantage Africa to see what and how can
we get the resources to continuechanging this narrative.
(42:24):
I know we are trying, but sometimes the resources don't
allow us, but we're trying all what we can to make sure that we
don't bury the dreams of the young women.
And through that that's why we started certain enterprises that
(42:45):
to support them have small businesses to be able to do some
businesses that would not again expose them to my son and the
young ladies who what may be to get more skills in tethering and
other hand skills. We are also trying to support
them so that they can get more skills that will give them money
(43:08):
without struggling so much in the sun.
Already there's ladies. They're super.
All are thriving beyond their lives to make sure that they
support their children. How deeply does skin cancer
impact persons with albinism? What kind of problems does it
(43:33):
lead to? Well, thank you so much for that
question. In fact, when even try to Google
it before giving you the fact finding in organization, find
that above 90 persons with holism die skin cancer before
celebrating there 30 years of age.
Others they die between 30 and 40.
(43:53):
So biggest percentage, I would say that the most kill of
persons with albinism and skin cancer and that became one of
our pillar on health, improving the lives of the health of
persons without albinism buried using the skin cancer cases and
became one of our first project to be done by advantage
(44:14):
everything. And this was supporting the
different quarterly skin clinics.
So every quarter, every after four months we go to the same
people and make sure that this skin does clean the phrase you
know are free from skin. But on top of that to give them
(44:36):
the sanskrotions, giving them the wide brim they had, giving
them the glasses and all thing that protects them.
To be honestly where we were in Busova, where we started from in
Busova sub region, eastern part of Uganda where we had conducted
these clinic clinics of more than 10 years.
(44:59):
We see a very great by the time we started every month would
register many cases of skin cancer.
I would say that by then the rate was about 96%.
You'll find patients whose skinsare really rough and carrying
(45:21):
some pre cancerous solutions andwhat but now as I speak, even
the patient who normally we get skin cancer that out of the soda
sub region, which showed that the skin cancer can be
eliminated if we work on it earlier.
And this is the hope that we have if we continue to do what
(45:45):
we did in the sub region, we'll have cancer free environment for
persons with albinism. If the reason why we expanded
our world to other parts of building that by the way, it's
still not only Uganda, but if I now will provide the sun school
ocean to some part of thousand Sudan and Eastern Kenya.
(46:08):
They come to benefit from these services.
And our vision is to make to make these persons with an
Organism free from skin cancer because it's prevented, can be
prevented if we take the good precautions like which we are
taking in different parts of thecountry.
(46:29):
We believe that one day, one time they would be like those
who saw the separation. However, it's one of the keener
and why skin cancer? This comes back to the first
story which I told you. The adults were not given
opportunity to go to school. I wanted to bring the circle of
skin cancer and poverty among persons with Organism.
(46:52):
The issue is, as I told you thatat earlier passions with
albinism were not given a chanceto go to school because of the
midterm misperceptions attach the condition taking that they
won't make it even when they go to school, so they didn't give
them more sex special the adultsopportunity to go to school.
(47:14):
And when you're not educated, ofcourse to gather money, you will
have to do the hardware, you will have to expose yourself to
the sun. And when you expose yourself to
the sun, there is high risks of getting wounds and skinny
cancers. And that's why that's count that
most persons without be used to die between 3040.
(47:37):
However, through this, we're seeing people growing up older
and older and we think so this has been one of the number one
kill and we're trying all the best to treat those ones who are
sick, but also a major focus in preventing the skin cancer.
(47:59):
And that's why every month we try to go to different districts
across the country to make sure that we prevent them from
getting sleepy. We go to school, we dedicated
them, we try to educate different people.
In fact, here we are up killing the government to continue to do
(48:19):
what it takes to make sure that even the subscription that we
give need to be in the government hospitals.
These are the machines in fact, and that entire country, we are
the ones owning this Kroger machine, but I need them to be
owned in the country. We need to the government to
increase the number of dermatologists so that people
(48:42):
don't struggle to come to us. We need them to get the
treatment wherever they are. So that's our pray in the future
and if that is there, then we'llbe able to fight still
Councilman this person in our community.
Thank you so very much for this discussion and for sharing your
(49:04):
personal story and all the challenges that are being faced,
but also what is being done about them.
I just want to close on asking you.
You talked about how lives are being changed and lives are
being saved through the skin cancer prevention.
Is there anything else? What else gives you cause for
(49:26):
optimism and hope for the futureof persons with albinism?
What it gives me for to be honest, when we see this,
somebody has lost hope. For example, when you see these
people struggling skin cancer, see them regaining back their
lives, it gives me but also the work that we've been doing when
(49:49):
we see where we are and where weare from.
It's helped to clearly give me the picture of where we are
going. 10 years, as I said, wouldn't share the same taxi
opens wouldn't go me. I was like it, but my colleagues
(50:10):
wouldn't go to school. You find many that were abused.
We were not in towns. Most of the children with
albinism were hidden in villages.
And what? But right now the things which
really gives me and gives me more to continue doing what we
(50:30):
do and more so if we're joined by people like Advent in Africa,
people like you were sharing ourstories.
Too many to understand that it'spossible.
The change is very possible. Yeah.
It gives me hope. No.
Yes, we will reach there. We've not yet reached there, but
there is hope. We're seeing it now that we will
(50:53):
reach there by that this. I'm happy that it has been
proved to many other African countries that things can
change. And I know there are some
people, some places where killing the happening, but with
what we've seen, it's very possible things to change, like
what we are doing, calling the traditional heroes to come to
(51:15):
denounce this kind of things, ithelps.
It's helping to change, holding the stakeholders and holding
them accountable and what are they doing?
It makes things to happen. Informing persons with albinism
how better they can care for themselves and letting them know
that your PRS doesn't make you less human, it's making them
(51:39):
more stronger. Seeing these ladies with who are
single mothers struggled becausetheir children, it gives a lot
of if they're big it how about us?
How about me? So all these kind of things
gives me a lot of energy and seethe real picture for tomorrow
(52:01):
and I can't wait to see them tomorrow whereby a person will
not define me by my appearance but it will define me by my
abilities. Thank you so very much.
And before we wrap up today's episode, we wanted to share the
information for this year's International Albinism Awareness
Day, June 13th, 2025. Oh yes, and this year's theme is
(52:25):
really significant. It is demanding our rights,
protect our skin, preserve our lives.
You know, it's shocking that in 2025 we're still seeing
preventable skin cancer deaths in people with albinism.
That's not just a healthcare oversight, it's literally a
human rights issue. Absolutely.
(52:47):
When you think about it, sunscreen isn't just a cosmetic
product for people, especially purses with albinism, It's life
saving medicine. That's why there's big push to
get the World Health Organization to add sunscreen to
their essential medicines list. If you want to learn more or get
involved, albinism advocacy groups are already taking are
(53:09):
already talking about celebrating International
Awareness Day, so be sure to look for social media posts and
share them. Thank you for sharing their
posts and using their hashtags to help expand the conversation.
This is about fundamental rights, the right to health and
the right to light, the two mostimportant human rights, without
(53:30):
which you can have the others. Sometimes the simplest
interventions can make the biggest difference.
This year's theme is really calling on authorities to take
concrete action, demanding that governments recognize that
preventable skin cancer deaths in persons with albinism violate
both the right to health and theright to life itself.
(53:51):
Exactly. They're asking for practical
steps like funding skin cancer screening programs, making
sunscreen readily available, andadding it to The Who Essential
medicines list. And there's a push for better
data collection, too. They want authorities to track
how many people with albinism are affected by skin cancer so
we can understand the true scaleof the problem.
(54:13):
It's about accountability. These deaths are preventable
with the right resources and attention from health
authorities. You for joining us for this
episode of Witch Hunt. Have you subscribed to our
YouTube channel yet? Do that today.
Have a great today and a beautiful tomorrow.
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