November 20, 2024 • 50 mins
We explore the urgent human rights crisis affecting people with albinism in Africa. Expert guest Jay Mohammed Osman Kamara, Executive Director of the Sierra Leone Association of Persons with Albinism (SLAPWA), discusses protecting persons with albinism and the critical significance of UN Resolution 47/8 on eliminating harmful practices related to witchcraft accusations and ritual attacks. Drawing from his experiences and presentation at the Witchcraft and Human Rights Conference, Kamara reveals how deeply-rooted supernatural beliefs fuel deadly misconceptions, discrimination, and ritual attacks against persons with albinism. The conversation examines SLAPWA's grassroots advocacy, community education initiatives, and protection strategies, while highlighting how the climate crisis creates extreme vulnerabilities for the albinism community. Learn about the critical need for enhanced data collection, stronger government protections, and international cooperation in safeguarding persons with albinism. Content warning: This episode contains discussions of discrimination, violence, and suicide. Crisis support resources - United States: call/text 988 or visit 988lifeline.org; United Kingdom: call 111 or text SHOUT to 85258; Canada: call/text 988; Sierra Leone: dial 019.
Links to learn more and become a partner
email: slapwa.sl@gmail.com
Sierra Leone Association of Persons with Albinism
Sierra Leone Association of Persons with Albinism Facebook Page
End Witch Hunts U. S. Nonprofit Organization
Pro Victimis
Medical Assistance Sierra Leone
This is Lancaster Podcast: Witchcraft Accusation in the Modern World
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
So most of those mothers giving back to people without being
like discriminated or born in their community, people are
afraid of them. People are afraid to assure
themselves with them. Welcome to Witch Hunt, the
podcast discussing the damage done when we do not treat others
as fully human. I'm Josh Hutchinson.
(00:20):
I'm Sarah Jack. On today's episode, we're
discussing a critical human rights issue affecting people
all around the world. We're joined by Jay Mohammad
Osman Kamara, executive directorof the Sierra Leone Association
of Persons with Albinism, or Slapwa.
We met Jay at the Witchcraft andHuman Rights Conference in
(00:42):
Lancaster, England, where he shared powerful insights about
how witchcraft accusations impact persons with albinism.
In Sierra Leone and other parts of Africa, persons with albinism
face deadly misconceptions, discrimination and ritual
attacks, all fueled by supernatural beliefs.
Jay explains how these harmful practices affect not just
(01:03):
individuals, but entire families, and how his
organization is working to create change through education,
advocacy, and direct support. He also discusses how climate
change is creating additional challenges for persons with
albinism and why better data collection and government
protection are urgently needed. This conversation touches on
(01:24):
some difficult topics, includingdiscrimination, violence and
suicide, but it also offers hopeto the important work being done
by SLAPWA and other organizations.
If you or someone you know is incrisis and you are in the United
States, contact the 988 Suicide and Crisis Lifeline now.
Call or text 988 or visit 988lifeline.org.
(01:46):
To chat with the counselor in the United Kingdom, call 111 or
text SHOUT to 85258. In Canada, call or text 988.
It's Sierra Leone. Dial 019.
We're grateful to Jay for sharing his experience and
expertise. Let's get started.
(02:07):
It was so wonderful to meet you at the Witchcraft and Human
Rights Conference in Lancaster, England in September.
Thank you for coming on Witch Hunt Podcast.
Can you introduce yourself and tell us about your work?
OK, thank you too. And it was nice meeting you and
Jess on that particular event. Yeah, so I am Mohammed Osman
(02:28):
Kamala, the executive director for Saudi and Association of
Patients with Albinism, said Slap Waffle Shop.
But you can also call me Jay. And is there anything that we
should know about Sierra Leone? What would you like us to know
about your country? Oh yeah, Sierra Leone is like a
(02:50):
nickname, say Aloha, the lion mountain, and you can also see
the diamond of Africa and it's acountry of modern 14 ethnic like
said sides or languages that people speak, friendly people, a
land full of natural resources, nice beaches with white sand and
(03:11):
every other themed with amazing people that are very welcoming
to every person around the world.
So it's a very peaceful country right now.
Do on the index the standard of living we're down, but the
(03:31):
people are amazing. So it's a very nice place for
people to visit. Today we're going to talk about
your organization. We want to start with helping
people understand the condition of albinism.
What do people need to know whenthey start listening to this
conversation? OK, yeah, people should.
(03:55):
People with albinism are just like any other person and but
albinism is a excessive as a condition, excessive genetic
condition, which is we can say the mutilation of a melanin,
which is the thing that is responsible to give coloration
(04:19):
to the skin. It's can be total absence of
that particular gene or partial absence of the gene.
If you can be have some amount of melanin but not much.
And so you also face sensitive to the light.
It affects the eyes, the ear andthen the skin.
We lack melanin in this part andbecause of that lack we are
(04:42):
prone to skin cancer and also weare short sighted and the
physical appearance of passing with albinism.
Also we we warrants tear name Collins and also people will be
some kids will be very afraid ofpeople with albinism down here.
(05:05):
So people need to understand being ISM is just a genetic
condition and it's because both parents are carry out of the
gene. That's why they give birth to a
child with albinism. A single beings with the gene
having relationship sexual relationship intercourse with
another person who does not havethe gene.
(05:27):
They cannot give birth to a person without being there.
Both beings need to be careers of the gene.
So that's it about albinism and it's you in AET.
So it's AEDT, it's genetic. So there is no much explanation
about albinism rather than it's very genetic and there's no
(05:48):
cure. And it's caught across all these
all ethnicity around the world. And I believe in all living
things, animals. We have animals which have
albinism. We have lions, elephants, snakes
that have albinism. So albinism contact course, all
living things and all uses. Yeah.
(06:14):
So that is about albinism. The Saudi Association of
Patients with Albinism is founded in 2015, and then we
registered officially with the Free Town City Council on 2017
in 2017, and then with the mercyof social welfare in 2018, the
(06:40):
Saline Union on disability issues.
Because also people with albinism are under the community
of people with disability in genea, in Sierra Leone or I
think everywhere right now in the world to consider also
bossing sweet impairment. We are under the category of
people with disability and then we register the huge Commission
(07:04):
in 2020 and and we are partner with the National Disability
Commission. We're in say aliens, we have
that good relationship with disability Commission or say
aliens. We have been in existence since
then 2015 up to now. We have a force project since
the establishment of the organization.
(07:26):
We have a force official projectwhich like a three-year project
with poor victims at PVL with the help of medical assistance.
Say El Eun who are based in the UK, who have been helping us
since 2019 with sunscreen, sun protective gears, some used
clothing, hats, sunglasses to give to our members all across
(07:47):
the country since 2019 till date.
And they help us to secure that particular project jointly.
We applied for the projects jointly and then we secure the
project and the project has ended in 2024 this September.
So we are very, very, very amazed to have that project and
(08:08):
that project has helped us reachout to communities that we have
want to reach out to. We have developed a booklets
called support and advice booklets for people with
albinism, that is for people with albinism, parents and
caregivers, which educates people about how to take care of
what's this albinism trust, how to protect yourself from the sun
(08:30):
and how to overcome stigma, stigmatization and neglect,
discrimination in social Darian in their community and how to
put on sunscreen when we had to to put it on and how to protect
yourself from the sun like we are, you know, SPF Claudine
(08:52):
Matthias using umbrellas and allthose things because the sun is
our greatest enemy in this particular area of climate
change, the increase it. We're facing a lot of challenges
in sale and also we're trying tosolve the meat that's around
albinism because myths that surround albinism for
(09:14):
witchcraft, devilish accusation.Like you say, people with
albinism are devil, they don't die, they just disappear.
Those are the comments that we get from people when passing on
the streets of Freetown or in the provincial areas.
We have people who have discarded.
So we wanted to change that narrative.
That's the main science that we have as possible with albinism
(09:35):
that we have should for slap what to come for So like at the
organization, because we wanted to use the stigma, the
discrimination and the neglect and also the exclusion because
society has been excluding us for a long time in all
developmental activities. Because the stereotype that
(09:56):
surrounds our condition. Our models that give birth to us
are being like marginalized choose of witchcraft because
they said you give birth to a devil and some fathers will like
just abandoned the mother and the kid because the kid have
albinism and the same they're not responsible.
(10:19):
They're not responsible for the birth of that child because both
of them are back. Or the father is very melanated
and the kid that they give birthto is like say you kill without
melanin, very white. So they say if they are not
saying he cheats with a white man, they will see.
There's no belief that you watched you in the night and so
(10:42):
entered you or you watch you, you are the stream side or the
Riverside and then devil going to the the stomach of the
mother. Or you had your message and then
get sexual intercourse with withyour partner and then you
conceive a person with albinism or it's just a devil.
In fact, it's just the speeds that's come into your stomach
(11:03):
and then it the kid is there andthe kid would definitely not
die, would just disappear. So all of these statesman, the
moms are the ones that are forced and ceasing to
discrimination before the child because the child don't have the
five senses are not like developed yet.
But the discrimination has been faced by the mom and should
(11:25):
because of that suicidal niche or societal exclusion of people
like me. It's meant the harmful practices
because they want throw a child away because they have albinism.
Sometimes the mom would because of that scare joke from society
would just run through the childin the like in the forest of a
war on like in the sea, the water, the the stream around the
(11:49):
villages. So that has called those
alarming. It's very alarming and we see
how society is treating us. People will come in a bus, they
will not want to sit close to you.
People will be spitting on theirchest thinking that when they do
that, they will not give back a child with albinism.
So all of these myths are the ones that warrant us to start an
(12:13):
organization like this, to see how we can reduce the stigma
that neglects the prejudice. The myth surrounds albinism in
Sierra Leone. That is why we found the
organization and the organization have been doing a
lot with the fonts that we receive and we have received
fonts from different organization to complement this
(12:34):
particular project that we have from UNDP, which that's from
help us go around the country toabout 14 D streets and also in
Freetown, all some up to 16 districts.
We engage them in training of teachers for them to understand
how to accommodate kids with albinism in schools because the
(12:55):
discrimination in school and learning institution is immense.
So we have a lot of dropouts of people with albinism in Sierra
Leone that are not going to school.
The cost of the discrimination, the neglects by parents and the
on fear treatment, the inhuman treatments by stakeholders in
(13:17):
society like within the school environments, within hospital,
when going for medical facility too.
Because when going for medical services at the hospital,
because people with disability in general should have free
healthcare. And so you that's what's on the
Disability Act of 2011. But albinism is not held fully
(13:41):
in the Disability Act. But the definition of a possible
albinism that the employment, it's obesity and other things
are there, which encompasses people.
Without people, people don't know because it's not like
feasible, the visibility is not there.
So we find it difficult to access those services.
Those three services that we should get, we are not getting
(14:02):
them. So because of that we are facing
a lot of difficulties. The economic and social impacts
of our condition is like not favourable for people without
been assuming say earlier. And because of that the
organization has engaged community meetings at community
(14:25):
level both in the provinces and in in ski town.
We've there are about 1000, morethan 1000 teachers that we have
engaged across the country to understand the condition of
people with albinism and how they should create us in those
learning institution. And we engage some medical
people like the midwives, midwives in hospital for them to
(14:50):
understand how to welcome defence for them to understand
the condition of albinism. Because honestly, in the medical
field that is supposed to know the condition of people with
albinism are not well educated in that vein, because those
sides is not like in our schools, they don't, they don't
just say you out what is albino or what is albinism, but they
(15:14):
don't go in depth about the condition.
So most of the medical people still have both that belief that
people with albinism are also devilish.
They don't die. It's because of witchcraft.
That's the mother give birth to a child because of a course
within the family that they givebirth to a child with albinism.
(15:34):
So most of those mothers giving birth to people without being
that being like discriminated orborn in their community.
People are afraid of them. People are afraid to shoot
themselves with them. And then for the kids, people
who want to judge people with albinism.
So most people who yeah thinkingthat when they when they are in
(15:54):
contact child or a person without being with him still
give birth to a person without being with him.
So we have to engage the media would beams social media and
also electronics media to pass on the information that we are
just like any other person and we deserve rights we expect and
(16:15):
dignity for many other bosses. So that is what I've been the
job of the organization so far and we are still continuing with
our work of advocacy, education and building a community and
provision of eye care and also the sun skin that's prevention
(16:36):
of skin cancer. So those have been thematic
areas that we're working on. Most importantly, we want to
build community so we can do the, the, the the projects.
The projects is called creating a community and almost in the
right of people with albinism sure will be a great in that
community and commotion. The height of people with
(16:56):
albinism because when you have acommunity of people with
albinism, like they face the same challenges and some of
which some people within the committee have over 10 those
challenges that they are facing.That's what the younger ones
coming up for them to understand.
They can also conquer all the discrimination, conquer all the
(17:17):
challenges that they're facing and also excellent life and
achieve their dreams. So, so that basically a synopsis
or in a nutshell, what the organization stands for and why
we formed the Sierra Leone Association of Patients without
being sent. Thank you, Jay.
Thanks for going into all of that.
(17:37):
I just learned a lot just now listening to you, all the ways
that the misunderstanding is nota big enough word, but the
misconceptions and how all of that just affects the family and
then the community and how that ripples through everything and
(17:59):
it's so destructive. And thank you for explaining
that your organization is so critical and it sounds like
you're starting these partnerships that are going to
develop more health education inhealth organizations and then in
schools. The one of the things that we've
(18:20):
talked about on this program previously is the United Nations
resolution 47, eight, the elimination of harmful practices
related to accusations of witchcraft and ritual attacks.
Can you tell us how what the significance of that resolution
is to your organization? Oh, OK.
Thank you very much for that question.
(18:41):
And I was out of the once in Atlanta stat, which we have
phones from Lancaster, like 2 smaller phones.
And that one is the, I think is the total one that we have in
with them. So we have the one is the
mystifying albinism in Sierra Leone, which we showcase, which
(19:01):
is showcase people with albinismwithin the albinism community
that have overcome the challenges and they'll be they
have become somebody in their expective profession.
Because people have myths about albinism, like people with
albinism don't achieve certain things.
(19:24):
They are not worthy to be part of the community.
They cannot amount to anything in life because that's the
belief. So when you have kids with
albinism, kids like you have children as you've given birth
to and then we think that group of Chilean, you have a child
with albinism there. The child with albinism is
normally not considered as any person real event in the family.
(19:51):
It will not have amount to anything.
So that's the belief of basically communities in
sardine, people in sardine. So we showcase people that are
teachers, people that are capitals, people are social
workers, they have. The key in social work and they
are trying to have their degree in law.
(20:13):
We have somebody with a model oris also diploma older in tourism
management. We have teachers.
So we have people who are nauseous within the community so
we should kiss them. And there's a paper coming out
for that. And then the next one is with
Lancaster is another one and a short one.
(20:33):
Which one to expand on That's particular thing.
Doing some research and everything we came that project
which enabled me to be part of the witchcraft conference.
The resolution is 847 eight, which try to criminalize the
witchcraft and harmful practicesof people.
(20:53):
So it's affecting us gravely. And that resolution will really,
really help people with albinismin salient because to be honest
with you, we were not aware about the conference of the
Lancaster University approach usand said within the budget of
this recent widget that we're working on.
(21:16):
We want you guys to be part of this particular conference.
And they explain to us that thisresolution are being nearby by
Charlotte speaker the independent experts on albinism.
Then that is Ill IK and another bossing which I don't remember
the name but there we are. The main pioneers of that
(21:39):
particular is Lucian until it was passed and that resolution
is more or less giving people that are accused of witchcraft
and the harmful practices that people are using the body parts
of people with albinism to perform ritual and that is
causing mayhem or causing peoplewithout being able to lose their
(22:03):
lives because of other people beliefs.
People believe that they will use our body parts to create
riches and wealth and how can you use the life of a human
being to for your own selfish gain just because you believed
that those parts will give you wealth?
That's which we are. That's and for practices.
So the resolution with because it informs states, states or
(22:27):
people that have signed to the that resolution that you guys
should both text people who are accused of witchcraft.
People who are like harmful practices are like they are
targets for harmful practices within the population within
your citizen, your citizens in your country.
You should will take them from those harmful practices on those
(22:49):
witchcraft accusation and there should be I believe there should
not just be like those laws. There should be those laws and
they need to be they need to be implemented and then the
resolution will not be signed and then states parties that
have signed to those the resolution.
And they're not like protecting people when those on full
(23:10):
practice or those which got the accusation are are being people
have been accused of witchcraft within the country and then they
are not taking any tangible action to stop people of doing
those things. So this resolution will help
people with abilities since we we have knowledge about it right
now, would definitely see to it that we could start particular
(23:31):
resolution in advocacy and in our community meetings within
the membership of the organization.
For them to understand that thisis another provision that the
United Nation has made that we can court because our country
like salient sign to that one and that was seizing on how to
like see how to is. I'll be honest around that
(23:53):
particular resolution. We definitely work with
Lancaster to see how the witchcraft to see how we can
reach out to them. And it's a proposal we write to
them to at least if it is a day or two day conference or a
symposium for the kids, The disability community, not just
people with albinism, but also the disability community to out
(24:16):
to be aware of that particular resolution and to fallen
government to take changeable actions on how the they will end
this witchcraft accusation in the harmful practices against
people, every person in say alien, but also people with
disability, old people and people with albinism from being
(24:37):
accused from from witchcraft accusation and other things.
All those aren't for parentheseshow to put a stop to them or to
reduce them. So we definitely see how we can
work and pass my ship all that to be even you guys there to if
you guys can, we definitely talkon that, how we could do some
extinct visit to know exactly how you guys are working there.
(25:02):
And we're going to take those information from you guys there
and see how we can implement some of them there.
And one thing that would definitely would be we're doing
is how we can start the podcast talking about the issues, the
challenges, the discrimination and all the other thing that
people would have been facing. Those are the ways we definitely
will shine a light on those challenges that we are facing.
(25:26):
Like the accusation and harmful practices is very immense and
people have undergone a lot of discrimination, neglect and
those harmful practices, they'veendured that one.
And then we want to see how those harmful practices can be
mitigated, reduced, or AI digited.
(25:47):
What can the Sierra Leone government do better to help
persons with albinism? Honestly is for them to
implement the provisions one theprovisions in the resolution 47
eight and also how they can provide the necessary needs of
(26:08):
people with albinism and put in laws that will accept fines.
And also even I don't want to see module terms for people if
you cannot pay the fine for you,like accusing or, or or wanna
like use the body parts of a policy with that.
Because the wall is a global village now, things that are
(26:32):
happening in South Africa might be happening here because we
have a evolution for a man that wants a fatherless home.
They call the home Fatima's home, you understand?
So they call the home of Fatima's home.
There's a there is a home for fatherless and motherless
(26:53):
children. The man explain to us how he was
on a research projects at Kabbalah, I think is a not
northern part of Sierra Leone. In particular.
He said that they undertook theywere at a village within
Kabbalah and that particular village they have some kids with
(27:15):
albinism there and they were sitting at the the hot talking
and then somebody blots the the point to him that this boy that
is passing. He was pointing at a child with
albinism said they would definitely use that child for
the next year each while to cleanse to clean for cleansing
(27:37):
of the land. He actually Pope in and said has
this been going on. He said yes, they have been
doing that particular each what sacrifice for a while now and
people are coming in from a partof the count.
They're like people who are likeor wanted political figures or
(27:58):
also people are want to grow their business.
People want to achieve a lot within society are coming there
for those sacrifices to be made for them.
But we did not know at that time.
It's not official. There is no official report on
that. What they said when they were
doing the his hatch, they cover that, but since it was just for
(28:19):
the war to know what happened during the war and how people
have been suffering with during the war and all that is what
they were trying to gather. And the research didn't did not
cover that part again. So if the stories that they find
out did not put it in the research, So what they know
definitely it tries to save the child and it did try and and
(28:42):
save the child brought the childto Freetown and then the the
then informed the bands after months, they informed the being
that your child is in free town with me.
So the parents come there. So now what they're doing is the
child because within that particular family, their
cousins, they normally give birth to a child to kids treated
(29:03):
albinism. So from that family, they have
two children. About five of them are possible
without being right now. They have younger ones like 7
and six years old that are with the man right now in Freetown.
So that's one up on back then during the war, that 11 year war
in Sierra Leone. So that would say that things
(29:25):
are happening in the in the darkthat we don't know about that
are happening. They're using people without
meaning for each other purposes here.
What is alarming there? And because people with albinism
here believe not to die, they just disappear.
And if kids with albinism disappear, they would think that
(29:46):
this is the way how they would die to their parents or their
caregivers will not will not like look for them.
So that's the situation. So our government can put some
strategies in place, some policies in place to see how
they can protect people with albinism, not just phone those
ritual, ritual attacks that we have found about now, but also
(30:09):
the harmful practices because it's the killing is like that's
a more that case. If you find out somebody that is
using people with have been in the poetry repose, that's more
that you're killing the person. So that's an old ball game, all
sentence. Every other thing was when
people with have been torn away by Europeans, that's also a
(30:30):
harmful practice to to that kid And and we we are not taking
light with people who are doing that.
And sometimes you don't know thethe mom that's threw the kid
away. Fathers abandoned the mom and
the kid sometimes. And those are things that there
should be laws to put affected mother and the kid because there
(30:51):
is no they are making to be a person with albinism and the
mother is all is just a chaos ofpregnancy.
Not that the mother is soul see is the one that impregnates
herself, the father and Greg meets the mom.
So anything that come out from that pregnancy, both partners
(31:13):
they took take the responsibility of that child.
So if they're doing like abandoned, the kids don't take
care of the mom. Accusing the mom of being a
witch, accusing the mom of prostituting like adults or
other things is not good. And if the child grows up to
hear that those are the accusation, Levy don't, he's our
(31:36):
mom, that's going to be a good thing for the child.
The mental health of the child will be compromised.
The discrimination in school, the provocation, name calling,
all those things will affect those.
And we have been all those things coming up in schools, in
our community. The provocation, the
discrimination, the neglect by our parents, some parents and
(31:57):
the neglect by community, the exclusion of kids participating
in extracurricular activity within the school premises,
those are things that will isolate a child with albinism.
Self isolation, self eat, suicidal thoughts, mental health
issues, fears, all of those things, anxieties, all of those
(32:19):
things are not good for a child to grow up with.
So if people are emotionally torturing people with albinism
and also physically it will not help a child to grow well or to
achieve is three more age schools in life.
So those are the things that we need governments to come on
(32:39):
board, the government to come onboard.
Put some policy is in place, putsome laws involved was the force
to be feasible in Disability Actand also improve on the
Disability Act or make a provision for us solely like
process with disability. This policy that is passed now,
this M resolution, how can they implement that resolution?
(33:02):
How can it's like domesticated and protects people with
albinism from all those challenges, from all those
neglects, from all those discrimination for all those
witchcraft accusation because they are calling you devil.
You don't die if they're saying they give birth to you because
your mother is a witch. And and all those accusation is
(33:23):
not good for the child. It's not good for also the
pigment because the pigments will abandoned the child because
of those foments will not associate themselves, will not
go out to the child, will keep the child at home.
But getting the child involving and community and social
guardians and also in school, because some people will not
(33:43):
even send their child to school because they said it's a waste
of money. They cannot see all those
beliefs are there, they are wasting their money to send them
to school. So the government need to put
strategies and policies in placeto see how they can support the
growth force of people with albinism and also organization
that are working for of people with albinism by empowering them
(34:04):
financially, giving them supportto cooperate.
Also advocates and campaign for the rights of people with
albinism is also a good way to see how they can limit the
stigma, the discrimination that associate with people with
albinism in Sierra Leone and howthey can put policies and laws
in place to protect and promote the rights of people with
(34:27):
albinism and how they should getstates actors involved.
Civil society organization also should come on board and
involving aspects of albinism and implementation or in the
carry on of their into the organizational work in the
country. That's really a well government
(34:49):
need to put strategies need to put policies need to empower
organizations that are watching on albinism and say earlier.
Thank you so much. Well, I was listening to you and
I was reflecting on 47 eight. I know one of the things that
Maluca and MIDI Drummond reminded us all was how
(35:10):
significant data is to getting action taken.
What kind of data can be collected and used to move
protections forward for persons with albinism?
I'm very, very happy that you brought that up for the data
(35:31):
collection is very, very. It's a vital points that you've
raised up. It's very, very important for us
to know exactly the number of people with albinism in Sierra
Leone because that I believe is the data force we need to
collect to know the exact numberof people with albinism.
The census, it's in 2015 the thenational census that took place,
(35:53):
they said it's 51 to get in two people with albinism in Salem,
but it's back then 2015 and within a 2015 census.
We also like challenge that particular census that we're
more than that in failure because within free time we have
more than 300 people with albinism just talk about all the
other 14 D St. and also each areas that we cannot reach.
(36:17):
So we definitely and also slap wise and the child's to about
500 people with albinism more than that, in fact.
So we definitely know we're morethan that and we need the
government to like how ties collecting data for people with
albinism, how they can collect data and know exactly how big
(36:39):
the problem is. So we can provide solution or
pro fashion addition to the protection of people with
Albinian. Provision of protective gears
for UVA is to see how we can make educational institution
build accessible to people with albinism.
The provision of learning a devices that will help people
(37:00):
with albinism learn more to knowexactly the treatment of the
socio economic status of people without been assuming because
also the economic oversea is an very important thing when it's
gone to talking advocating for the guides for people.
(37:21):
Because if they are accusing youof witchcraft and you're also
poor people who accuse you more that you wish because you cannot
provide for yourself and you look dirty all the time.
You wear on clean clothes, you wear clothes that are not like
presentable and you cannot shaveproperly.
(37:45):
You cannot keep yourself, you cannot provide popamine for
yourself. So you look tattered, you look
not presentable. So when people see you that you
beat beach calf and other thingstowards you because of that
particular situation that you'rein.
So if the livelihood project is being like done, that will help.
(38:07):
And also when you're doing census, you ask people about all
those things will help to know exactly how the poverty is
within the community is how muchhow many people are with
albinism inside you in general, you understand that will help
the government to to to share the wealth of the nation
accordingly because they know exactly the number of people
(38:28):
with albinism and they know where they are, the location
that they are, the location thathave more people with albinism.
So when they are providing like sunscreen or sun at a
sunglasses, they know where to send more, where to send less.
And also it will help the organization like failing
association to reach out to its members in those particular
(38:50):
regions or the particular communities that will help
immensity and even donor partners will have a valuable
assets to work on like they haveinformation to use to, to really
help out people with albinism inSierra Leone.
They really need to do that. They do not to know the number
of people with albinism those are that are educated, those are
(39:13):
dropouts, how many kids that aregoing to school?
Those are not going to school How many older people who are
with albinism you understand andthat's when it decide against
the population like that. You definitely know what to do,
how to target, which organization you directly take
care of the kids with albinism, which organization, what attack
(39:36):
like employment to know exactly how many people have
certificates and diplomas to. By that way, we would just lose
the life of people with albinismwithin Sierra Leone and.
Confirming the stigmatization, Do you have a message for people
who all misconceptions about persons with albinism?
(39:58):
Yeah, the message is very simpleand clear.
We are human beings like anyone else.
We breathe, we eat, we use the the the other room to the
restroom just like any other bossy.
Yes, we know we have challenges because we lack Melanie.
(40:20):
That's the only thing is a genetic condition.
It's not contagious. It's I will not say church and
then albinism transfers to you directly or at that instant.
So people need to know that we are just as human as you and she
will treat us right. Then the idea or the knowledge
(40:43):
to that we have will be shared. We we will also contribute to
national development and the name calling the neglect the ill
treatment, the inhuman treatmentof people with albinism by them
out there that are stigmatizing and discriminating us.
(41:04):
It's causing people to have mental health issue.
It's causing people to self hatethemselves.
It's causing people to like think about committing suicide.
So that simple action, that simple thing that did doing to
us that they seems like it's nothing to call somebody names
that they don't want to be called.
(41:26):
Not involving them in activitiesthat they're supposed to be
battles, not giving their rightsto them, not try to protect them
from these harmful practices andaccusations.
And as student name from developmental activities in all
states of life will cause valuable parts of the population
(41:49):
within Salient to be left out and without the knowledge.
We have people who are brilliant, we have people who
can commit the national development.
We have people who can contribute immensely in all
walks of life. If the provisions, if the
(42:09):
reasonable accommodation is beengiven to people with albinism,
then we can contribute to all walks of life that they're
doing. And we are saying that mutually
embraced inclusion and say no todiscrimination because simple
(42:30):
provocation or simple name calling and 'cause somebody to
take Israel alive. So if you don't want people to
commit suicide because of the words she spoke, the names you
call people that they don't want, stop discriminating and
neglecting or stigmatizing people without being using
(42:52):
insalien. Thank you so much.
Thank you. Is there anything else that you
want to be sure to discuss with us today for the listeners to
hear? Everyone listening to the
podcast should see how they can help propagate the information
(43:15):
that they have gathered today that albinism is a genetic
condition, it's not contagious. People with albinism are just
like any other person. That our simple name calling and
staring if it's meant to people with albinism will cause people
to hit themselves and which we don't want to commit mental
health issues that they should stop and see how they can reach
(43:38):
out to the organization if they want to support the work that
the organization is doing. Also, you can reach out to the
organization. I I believe you have the website
and all would definitely you go on www.albinismsaloon.org or you
can reach out to our Facebook page that will help.
(43:58):
You can e-mail us on slap1.sl@gmail.com.
That's what you able to reach out to us because we need as
small partnership as possible topropagate the issues of people
with albinism. Honestly, we're at a point now
in lies globally, climate changeand increase it is affecting
(44:24):
people with albinism more than people that are not with
albinism. I cannot say the climate change
is not affecting that. The increase, it is not
affecting everybody and the world right now, but people,
it's albinism are suffering the more because prior to the issue
of increase eats and all, we have been having skin cancer,
(44:47):
skin problem, blemishes, you know, skin cancer issues.
With the advent now this climatechange issue, the increase eats
and all, we are suffering heavily, immensely.
Even us protecting ourselves, wearing long sleeve, putting on
sunscreen where hard sunglasses.We're still suffering.
(45:08):
We're still having some blisters, we're still having
some dark spots, all because of the UVA's from the sun and
people that are working on climate change issues.
Because when your skin also is damaged, like you have blisters,
you have taxports and all, they will call your other names.
They will call you leopards, they will call you ghost, they
(45:30):
will call you devil, they will call you that, say zombie.
Just all those names that they are calling you, how can you
cope in life with all those names?
So they are warranting some witchcraft accusation too,
because your skin looks bad. And people, when your skin
looked bad, they said you're a witch, you don't look good, You
don't look up people who want toassociate themselves with you.
(45:53):
That's what caused people's lifementality.
They would commit suicide because of the way society is
fitting them. And we want people who are
working on climate change. This is the mitigation of it.
Should definitely see how they can work with people with
albinism or they say, you know, association of persons with
albinism because we can reach out to it would have been very
(46:14):
fast within the community. So we are not in isolation.
We have an open door and open arms to everybody that wants to
work with the organization in Sierra Leone.
We have announced. And then definitely, I know you
guys will post links to our websites and you can contact CIA
and Josh and they will definitely reach out to us.
(46:35):
Yeah, good snap, not bad now. So thank you for having me in
your podcast today and I will bethe information that I've given
on behalf of the Sailing Association of patients with
Albinism helps in propagating the issues of people with
albinism, not just in sailing here, but globally.
And we hope to come back on the podcast.
(46:59):
Again, thank you for having me. Thank you so much for joining
us. It's been quite wonderful having
you here and we'll definitely invite you back to welcome
anytime you have something to share, whatever that is if you
want to just the more this message gets out there the.
(47:19):
Better, yeah, the more we have Also before I forget, I should
recognize Scenica, there's a organization in the UK that's a
little bit of fun for us to see how we can reach out to people
who have health issues where we is an open phone that we can
use. So I want to recognize them as
(47:40):
they have been helpful to the organization to stop where and
also I'll definitely try to accomplice CNDP medical
assistance in Lancaster University.
You that giving us the platform yeah today and all of the
partners that have been helping us in all members of the
(48:01):
community of people with albinism and say you and family
member because when you're talking about albinism, you have
to involve the pains in order toreally see family members of
people with albinism because thestigma is a blank just because
you have a possibility with albinism within your family.
(48:22):
People are associating yourself.If I if I get married to
disposing well definitely if that's a child with albinism
because disposing is elated or is it broader to a possibility
that we are assisted to a possibility with albinism.
This issues that they need like very bored people are suffering
(48:44):
just because they have single person within a family with
supposed to be and that's also because people are accusing them
of that. They turn the hate to that
particular person without being with him because it's the cause
people will see. Yeah, the cause of people
neglecting the people talking, discriminating to me and people
accusing me of being carry out the gene of a person without
(49:05):
being in them because you're my brother or you're my sister.
So it's complex and it's very, very challenging for people with
albinism and their families downin Africa.
Here. It's very, very serious because
the we black people think they are.
They are thinking like they're being discriminated in a white
(49:28):
dominated country in the Westernworld.
That's all people with albinism are feeling down here in Africa.
You know, you whites pretend black dominated dominated Konski
or continent. You've been paid like this.
Just the look people will start this community in you.
(49:50):
So the pains that they are feeling there, we're feeling the
same pain down here. So people should understand that
too. Thank you, Jay.
Thank you, Jay. Thank you for joining us for
this episode of Witch Hunt. Join us every week.
Have a great today and a beautiful tomorrow.
So most of those mothers giving back to people without being
like discriminated or born in their community, people are
afraid of them. People are afraid to assure
themselves with them. Welcome to Witch Hunt, the
podcast discussing the damage done when we do not treat others
as fully human. I'm Josh Hutchinson.
(00:20):
I'm Sarah Jack. On today's episode, we're
discussing a critical human rights issue affecting people
all around the world. We're joined by Jay Mohammad
Osman Kamara, executive directorof the Sierra Leone Association
of Persons with Albinism, or Slapwa.
We met Jay at the Witchcraft andHuman Rights Conference in
(00:42):
Lancaster, England, where he shared powerful insights about
how witchcraft accusations impact persons with albinism.
In Sierra Leone and other parts of Africa, persons with albinism
face deadly misconceptions, discrimination and ritual
attacks, all fueled by supernatural beliefs.
Jay explains how these harmful practices affect not just
(01:03):
individuals, but entire families, and how his
organization is working to create change through education,
advocacy, and direct support. He also discusses how climate
change is creating additional challenges for persons with
albinism and why better data collection and government
protection are urgently needed. This conversation touches on
(01:24):
some difficult topics, includingdiscrimination, violence and
suicide, but it also offers hopeto the important work being done
by SLAPWA and other organizations.
If you or someone you know is incrisis and you are in the United
States, contact the 988 Suicide and Crisis Lifeline now.
Call or text 988 or visit 988lifeline.org.
(01:46):
To chat with the counselor in the United Kingdom, call 111 or
text SHOUT to 85258. In Canada, call or text 988.
It's Sierra Leone. Dial 019.
We're grateful to Jay for sharing his experience and
expertise. Let's get started.
(02:07):
It was so wonderful to meet you at the Witchcraft and Human
Rights Conference in Lancaster, England in September.
Thank you for coming on Witch Hunt Podcast.
Can you introduce yourself and tell us about your work?
OK, thank you too. And it was nice meeting you and
Jess on that particular event. Yeah, so I am Mohammed Osman
(02:28):
Kamala, the executive director for Saudi and Association of
Patients with Albinism, said Slap Waffle Shop.
But you can also call me Jay. And is there anything that we
should know about Sierra Leone? What would you like us to know
about your country? Oh yeah, Sierra Leone is like a
(02:50):
nickname, say Aloha, the lion mountain, and you can also see
the diamond of Africa and it's acountry of modern 14 ethnic like
said sides or languages that people speak, friendly people, a
land full of natural resources, nice beaches with white sand and
(03:11):
every other themed with amazing people that are very welcoming
to every person around the world.
So it's a very peaceful country right now.
Do on the index the standard of living we're down, but the
(03:31):
people are amazing. So it's a very nice place for
people to visit. Today we're going to talk about
your organization. We want to start with helping
people understand the condition of albinism.
What do people need to know whenthey start listening to this
conversation? OK, yeah, people should.
(03:55):
People with albinism are just like any other person and but
albinism is a excessive as a condition, excessive genetic
condition, which is we can say the mutilation of a melanin,
which is the thing that is responsible to give coloration
(04:19):
to the skin. It's can be total absence of
that particular gene or partial absence of the gene.
If you can be have some amount of melanin but not much.
And so you also face sensitive to the light.
It affects the eyes, the ear andthen the skin.
We lack melanin in this part andbecause of that lack we are
(04:42):
prone to skin cancer and also weare short sighted and the
physical appearance of passing with albinism.
Also we we warrants tear name Collins and also people will be
some kids will be very afraid ofpeople with albinism down here.
(05:05):
So people need to understand being ISM is just a genetic
condition and it's because both parents are carry out of the
gene. That's why they give birth to a
child with albinism. A single beings with the gene
having relationship sexual relationship intercourse with
another person who does not havethe gene.
(05:27):
They cannot give birth to a person without being there.
Both beings need to be careers of the gene.
So that's it about albinism and it's you in AET.
So it's AEDT, it's genetic. So there is no much explanation
about albinism rather than it's very genetic and there's no
(05:48):
cure. And it's caught across all these
all ethnicity around the world. And I believe in all living
things, animals. We have animals which have
albinism. We have lions, elephants, snakes
that have albinism. So albinism contact course, all
living things and all uses. Yeah.
(06:14):
So that is about albinism. The Saudi Association of
Patients with Albinism is founded in 2015, and then we
registered officially with the Free Town City Council on 2017
in 2017, and then with the mercyof social welfare in 2018, the
(06:40):
Saline Union on disability issues.
Because also people with albinism are under the community
of people with disability in genea, in Sierra Leone or I
think everywhere right now in the world to consider also
bossing sweet impairment. We are under the category of
people with disability and then we register the huge Commission
(07:04):
in 2020 and and we are partner with the National Disability
Commission. We're in say aliens, we have
that good relationship with disability Commission or say
aliens. We have been in existence since
then 2015 up to now. We have a force project since
the establishment of the organization.
(07:26):
We have a force official projectwhich like a three-year project
with poor victims at PVL with the help of medical assistance.
Say El Eun who are based in the UK, who have been helping us
since 2019 with sunscreen, sun protective gears, some used
clothing, hats, sunglasses to give to our members all across
(07:47):
the country since 2019 till date.
And they help us to secure that particular project jointly.
We applied for the projects jointly and then we secure the
project and the project has ended in 2024 this September.
So we are very, very, very amazed to have that project and
(08:08):
that project has helped us reachout to communities that we have
want to reach out to. We have developed a booklets
called support and advice booklets for people with
albinism, that is for people with albinism, parents and
caregivers, which educates people about how to take care of
what's this albinism trust, how to protect yourself from the sun
(08:30):
and how to overcome stigma, stigmatization and neglect,
discrimination in social Darian in their community and how to
put on sunscreen when we had to to put it on and how to protect
yourself from the sun like we are, you know, SPF Claudine
(08:52):
Matthias using umbrellas and allthose things because the sun is
our greatest enemy in this particular area of climate
change, the increase it. We're facing a lot of challenges
in sale and also we're trying tosolve the meat that's around
albinism because myths that surround albinism for
(09:14):
witchcraft, devilish accusation.Like you say, people with
albinism are devil, they don't die, they just disappear.
Those are the comments that we get from people when passing on
the streets of Freetown or in the provincial areas.
We have people who have discarded.
So we wanted to change that narrative.
That's the main science that we have as possible with albinism
(09:35):
that we have should for slap what to come for So like at the
organization, because we wanted to use the stigma, the
discrimination and the neglect and also the exclusion because
society has been excluding us for a long time in all
developmental activities. Because the stereotype that
(09:56):
surrounds our condition. Our models that give birth to us
are being like marginalized choose of witchcraft because
they said you give birth to a devil and some fathers will like
just abandoned the mother and the kid because the kid have
albinism and the same they're not responsible.
(10:19):
They're not responsible for the birth of that child because both
of them are back. Or the father is very melanated
and the kid that they give birthto is like say you kill without
melanin, very white. So they say if they are not
saying he cheats with a white man, they will see.
There's no belief that you watched you in the night and so
(10:42):
entered you or you watch you, you are the stream side or the
Riverside and then devil going to the the stomach of the
mother. Or you had your message and then
get sexual intercourse with withyour partner and then you
conceive a person with albinism or it's just a devil.
In fact, it's just the speeds that's come into your stomach
(11:03):
and then it the kid is there andthe kid would definitely not
die, would just disappear. So all of these statesman, the
moms are the ones that are forced and ceasing to
discrimination before the child because the child don't have the
five senses are not like developed yet.
But the discrimination has been faced by the mom and should
(11:25):
because of that suicidal niche or societal exclusion of people
like me. It's meant the harmful practices
because they want throw a child away because they have albinism.
Sometimes the mom would because of that scare joke from society
would just run through the childin the like in the forest of a
war on like in the sea, the water, the the stream around the
(11:49):
villages. So that has called those
alarming. It's very alarming and we see
how society is treating us. People will come in a bus, they
will not want to sit close to you.
People will be spitting on theirchest thinking that when they do
that, they will not give back a child with albinism.
So all of these myths are the ones that warrant us to start an
(12:13):
organization like this, to see how we can reduce the stigma
that neglects the prejudice. The myth surrounds albinism in
Sierra Leone. That is why we found the
organization and the organization have been doing a
lot with the fonts that we receive and we have received
fonts from different organization to complement this
(12:34):
particular project that we have from UNDP, which that's from
help us go around the country toabout 14 D streets and also in
Freetown, all some up to 16 districts.
We engage them in training of teachers for them to understand
how to accommodate kids with albinism in schools because the
(12:55):
discrimination in school and learning institution is immense.
So we have a lot of dropouts of people with albinism in Sierra
Leone that are not going to school.
The cost of the discrimination, the neglects by parents and the
on fear treatment, the inhuman treatments by stakeholders in
(13:17):
society like within the school environments, within hospital,
when going for medical facility too.
Because when going for medical services at the hospital,
because people with disability in general should have free
healthcare. And so you that's what's on the
Disability Act of 2011. But albinism is not held fully
(13:41):
in the Disability Act. But the definition of a possible
albinism that the employment, it's obesity and other things
are there, which encompasses people.
Without people, people don't know because it's not like
feasible, the visibility is not there.
So we find it difficult to access those services.
Those three services that we should get, we are not getting
(14:02):
them. So because of that we are facing
a lot of difficulties. The economic and social impacts
of our condition is like not favourable for people without
been assuming say earlier. And because of that the
organization has engaged community meetings at community
(14:25):
level both in the provinces and in in ski town.
We've there are about 1000, morethan 1000 teachers that we have
engaged across the country to understand the condition of
people with albinism and how they should create us in those
learning institution. And we engage some medical
people like the midwives, midwives in hospital for them to
(14:50):
understand how to welcome defence for them to understand
the condition of albinism. Because honestly, in the medical
field that is supposed to know the condition of people with
albinism are not well educated in that vein, because those
sides is not like in our schools, they don't, they don't
just say you out what is albino or what is albinism, but they
(15:14):
don't go in depth about the condition.
So most of the medical people still have both that belief that
people with albinism are also devilish.
They don't die. It's because of witchcraft.
That's the mother give birth to a child because of a course
within the family that they givebirth to a child with albinism.
(15:34):
So most of those mothers giving birth to people without being
that being like discriminated orborn in their community.
People are afraid of them. People are afraid to shoot
themselves with them. And then for the kids, people
who want to judge people with albinism.
So most people who yeah thinkingthat when they when they are in
(15:54):
contact child or a person without being with him still
give birth to a person without being with him.
So we have to engage the media would beams social media and
also electronics media to pass on the information that we are
just like any other person and we deserve rights we expect and
(16:15):
dignity for many other bosses. So that is what I've been the
job of the organization so far and we are still continuing with
our work of advocacy, education and building a community and
provision of eye care and also the sun skin that's prevention
(16:36):
of skin cancer. So those have been thematic
areas that we're working on. Most importantly, we want to
build community so we can do the, the, the the projects.
The projects is called creating a community and almost in the
right of people with albinism sure will be a great in that
community and commotion. The height of people with
(16:56):
albinism because when you have acommunity of people with
albinism, like they face the same challenges and some of
which some people within the committee have over 10 those
challenges that they are facing.That's what the younger ones
coming up for them to understand.
They can also conquer all the discrimination, conquer all the
(17:17):
challenges that they're facing and also excellent life and
achieve their dreams. So, so that basically a synopsis
or in a nutshell, what the organization stands for and why
we formed the Sierra Leone Association of Patients without
being sent. Thank you, Jay.
Thanks for going into all of that.
(17:37):
I just learned a lot just now listening to you, all the ways
that the misunderstanding is nota big enough word, but the
misconceptions and how all of that just affects the family and
then the community and how that ripples through everything and
(17:59):
it's so destructive. And thank you for explaining
that your organization is so critical and it sounds like
you're starting these partnerships that are going to
develop more health education inhealth organizations and then in
schools. The one of the things that we've
(18:20):
talked about on this program previously is the United Nations
resolution 47, eight, the elimination of harmful practices
related to accusations of witchcraft and ritual attacks.
Can you tell us how what the significance of that resolution
is to your organization? Oh, OK.
Thank you very much for that question.
(18:41):
And I was out of the once in Atlanta stat, which we have
phones from Lancaster, like 2 smaller phones.
And that one is the, I think is the total one that we have in
with them. So we have the one is the
mystifying albinism in Sierra Leone, which we showcase, which
(19:01):
is showcase people with albinismwithin the albinism community
that have overcome the challenges and they'll be they
have become somebody in their expective profession.
Because people have myths about albinism, like people with
albinism don't achieve certain things.
(19:24):
They are not worthy to be part of the community.
They cannot amount to anything in life because that's the
belief. So when you have kids with
albinism, kids like you have children as you've given birth
to and then we think that group of Chilean, you have a child
with albinism there. The child with albinism is
normally not considered as any person real event in the family.
(19:51):
It will not have amount to anything.
So that's the belief of basically communities in
sardine, people in sardine. So we showcase people that are
teachers, people that are capitals, people are social
workers, they have. The key in social work and they
are trying to have their degree in law.
(20:13):
We have somebody with a model oris also diploma older in tourism
management. We have teachers.
So we have people who are nauseous within the community so
we should kiss them. And there's a paper coming out
for that. And then the next one is with
Lancaster is another one and a short one.
(20:33):
Which one to expand on That's particular thing.
Doing some research and everything we came that project
which enabled me to be part of the witchcraft conference.
The resolution is 847 eight, which try to criminalize the
witchcraft and harmful practicesof people.
(20:53):
So it's affecting us gravely. And that resolution will really,
really help people with albinismin salient because to be honest
with you, we were not aware about the conference of the
Lancaster University approach usand said within the budget of
this recent widget that we're working on.
(21:16):
We want you guys to be part of this particular conference.
And they explain to us that thisresolution are being nearby by
Charlotte speaker the independent experts on albinism.
Then that is Ill IK and another bossing which I don't remember
the name but there we are. The main pioneers of that
(21:39):
particular is Lucian until it was passed and that resolution
is more or less giving people that are accused of witchcraft
and the harmful practices that people are using the body parts
of people with albinism to perform ritual and that is
causing mayhem or causing peoplewithout being able to lose their
(22:03):
lives because of other people beliefs.
People believe that they will use our body parts to create
riches and wealth and how can you use the life of a human
being to for your own selfish gain just because you believed
that those parts will give you wealth?
That's which we are. That's and for practices.
So the resolution with because it informs states, states or
(22:27):
people that have signed to the that resolution that you guys
should both text people who are accused of witchcraft.
People who are like harmful practices are like they are
targets for harmful practices within the population within
your citizen, your citizens in your country.
You should will take them from those harmful practices on those
(22:49):
witchcraft accusation and there should be I believe there should
not just be like those laws. There should be those laws and
they need to be they need to be implemented and then the
resolution will not be signed and then states parties that
have signed to those the resolution.
And they're not like protecting people when those on full
(23:10):
practice or those which got the accusation are are being people
have been accused of witchcraft within the country and then they
are not taking any tangible action to stop people of doing
those things. So this resolution will help
people with abilities since we we have knowledge about it right
now, would definitely see to it that we could start particular
(23:31):
resolution in advocacy and in our community meetings within
the membership of the organization.
For them to understand that thisis another provision that the
United Nation has made that we can court because our country
like salient sign to that one and that was seizing on how to
like see how to is. I'll be honest around that
(23:53):
particular resolution. We definitely work with
Lancaster to see how the witchcraft to see how we can
reach out to them. And it's a proposal we write to
them to at least if it is a day or two day conference or a
symposium for the kids, The disability community, not just
people with albinism, but also the disability community to out
(24:16):
to be aware of that particular resolution and to fallen
government to take changeable actions on how the they will end
this witchcraft accusation in the harmful practices against
people, every person in say alien, but also people with
disability, old people and people with albinism from being
(24:37):
accused from from witchcraft accusation and other things.
All those aren't for parentheseshow to put a stop to them or to
reduce them. So we definitely see how we can
work and pass my ship all that to be even you guys there to if
you guys can, we definitely talkon that, how we could do some
extinct visit to know exactly how you guys are working there.
(25:02):
And we're going to take those information from you guys there
and see how we can implement some of them there.
And one thing that would definitely would be we're doing
is how we can start the podcast talking about the issues, the
challenges, the discrimination and all the other thing that
people would have been facing. Those are the ways we definitely
will shine a light on those challenges that we are facing.
(25:26):
Like the accusation and harmful practices is very immense and
people have undergone a lot of discrimination, neglect and
those harmful practices, they'veendured that one.
And then we want to see how those harmful practices can be
mitigated, reduced, or AI digited.
(25:47):
What can the Sierra Leone government do better to help
persons with albinism? Honestly is for them to
implement the provisions one theprovisions in the resolution 47
eight and also how they can provide the necessary needs of
(26:08):
people with albinism and put in laws that will accept fines.
And also even I don't want to see module terms for people if
you cannot pay the fine for you,like accusing or, or or wanna
like use the body parts of a policy with that.
Because the wall is a global village now, things that are
(26:32):
happening in South Africa might be happening here because we
have a evolution for a man that wants a fatherless home.
They call the home Fatima's home, you understand?
So they call the home of Fatima's home.
There's a there is a home for fatherless and motherless
(26:53):
children. The man explain to us how he was
on a research projects at Kabbalah, I think is a not
northern part of Sierra Leone. In particular.
He said that they undertook theywere at a village within
Kabbalah and that particular village they have some kids with
(27:15):
albinism there and they were sitting at the the hot talking
and then somebody blots the the point to him that this boy that
is passing. He was pointing at a child with
albinism said they would definitely use that child for
the next year each while to cleanse to clean for cleansing
(27:37):
of the land. He actually Pope in and said has
this been going on. He said yes, they have been
doing that particular each what sacrifice for a while now and
people are coming in from a partof the count.
They're like people who are likeor wanted political figures or
(27:58):
also people are want to grow their business.
People want to achieve a lot within society are coming there
for those sacrifices to be made for them.
But we did not know at that time.
It's not official. There is no official report on
that. What they said when they were
doing the his hatch, they cover that, but since it was just for
(28:19):
the war to know what happened during the war and how people
have been suffering with during the war and all that is what
they were trying to gather. And the research didn't did not
cover that part again. So if the stories that they find
out did not put it in the research, So what they know
definitely it tries to save the child and it did try and and
(28:42):
save the child brought the childto Freetown and then the the
then informed the bands after months, they informed the being
that your child is in free town with me.
So the parents come there. So now what they're doing is the
child because within that particular family, their
cousins, they normally give birth to a child to kids treated
(29:03):
albinism. So from that family, they have
two children. About five of them are possible
without being right now. They have younger ones like 7
and six years old that are with the man right now in Freetown.
So that's one up on back then during the war, that 11 year war
in Sierra Leone. So that would say that things
(29:25):
are happening in the in the darkthat we don't know about that
are happening. They're using people without
meaning for each other purposes here.
What is alarming there? And because people with albinism
here believe not to die, they just disappear.
And if kids with albinism disappear, they would think that
(29:46):
this is the way how they would die to their parents or their
caregivers will not will not like look for them.
So that's the situation. So our government can put some
strategies in place, some policies in place to see how
they can protect people with albinism, not just phone those
ritual, ritual attacks that we have found about now, but also
(30:09):
the harmful practices because it's the killing is like that's
a more that case. If you find out somebody that is
using people with have been in the poetry repose, that's more
that you're killing the person. So that's an old ball game, all
sentence. Every other thing was when
people with have been torn away by Europeans, that's also a
(30:30):
harmful practice to to that kid And and we we are not taking
light with people who are doing that.
And sometimes you don't know thethe mom that's threw the kid
away. Fathers abandoned the mom and
the kid sometimes. And those are things that there
should be laws to put affected mother and the kid because there
(30:51):
is no they are making to be a person with albinism and the
mother is all is just a chaos ofpregnancy.
Not that the mother is soul see is the one that impregnates
herself, the father and Greg meets the mom.
So anything that come out from that pregnancy, both partners
(31:13):
they took take the responsibility of that child.
So if they're doing like abandoned, the kids don't take
care of the mom. Accusing the mom of being a
witch, accusing the mom of prostituting like adults or
other things is not good. And if the child grows up to
hear that those are the accusation, Levy don't, he's our
(31:36):
mom, that's going to be a good thing for the child.
The mental health of the child will be compromised.
The discrimination in school, the provocation, name calling,
all those things will affect those.
And we have been all those things coming up in schools, in
our community. The provocation, the
discrimination, the neglect by our parents, some parents and
(31:57):
the neglect by community, the exclusion of kids participating
in extracurricular activity within the school premises,
those are things that will isolate a child with albinism.
Self isolation, self eat, suicidal thoughts, mental health
issues, fears, all of those things, anxieties, all of those
(32:19):
things are not good for a child to grow up with.
So if people are emotionally torturing people with albinism
and also physically it will not help a child to grow well or to
achieve is three more age schools in life.
So those are the things that we need governments to come on
(32:39):
board, the government to come onboard.
Put some policy is in place, putsome laws involved was the force
to be feasible in Disability Actand also improve on the
Disability Act or make a provision for us solely like
process with disability. This policy that is passed now,
this M resolution, how can they implement that resolution?
(33:02):
How can it's like domesticated and protects people with
albinism from all those challenges, from all those
neglects, from all those discrimination for all those
witchcraft accusation because they are calling you devil.
You don't die if they're saying they give birth to you because
your mother is a witch. And and all those accusation is
(33:23):
not good for the child. It's not good for also the
pigment because the pigments will abandoned the child because
of those foments will not associate themselves, will not
go out to the child, will keep the child at home.
But getting the child involving and community and social
guardians and also in school, because some people will not
(33:43):
even send their child to school because they said it's a waste
of money. They cannot see all those
beliefs are there, they are wasting their money to send them
to school. So the government need to put
strategies and policies in placeto see how they can support the
growth force of people with albinism and also organization
that are working for of people with albinism by empowering them
(34:04):
financially, giving them supportto cooperate.
Also advocates and campaign for the rights of people with
albinism is also a good way to see how they can limit the
stigma, the discrimination that associate with people with
albinism in Sierra Leone and howthey can put policies and laws
in place to protect and promote the rights of people with
(34:27):
albinism and how they should getstates actors involved.
Civil society organization also should come on board and
involving aspects of albinism and implementation or in the
carry on of their into the organizational work in the
country. That's really a well government
(34:49):
need to put strategies need to put policies need to empower
organizations that are watching on albinism and say earlier.
Thank you so much. Well, I was listening to you and
I was reflecting on 47 eight. I know one of the things that
Maluca and MIDI Drummond reminded us all was how
(35:10):
significant data is to getting action taken.
What kind of data can be collected and used to move
protections forward for persons with albinism?
I'm very, very happy that you brought that up for the data
(35:31):
collection is very, very. It's a vital points that you've
raised up. It's very, very important for us
to know exactly the number of people with albinism in Sierra
Leone because that I believe is the data force we need to
collect to know the exact numberof people with albinism.
The census, it's in 2015 the thenational census that took place,
(35:53):
they said it's 51 to get in two people with albinism in Salem,
but it's back then 2015 and within a 2015 census.
We also like challenge that particular census that we're
more than that in failure because within free time we have
more than 300 people with albinism just talk about all the
other 14 D St. and also each areas that we cannot reach.
(36:17):
So we definitely and also slap wise and the child's to about
500 people with albinism more than that, in fact.
So we definitely know we're morethan that and we need the
government to like how ties collecting data for people with
albinism, how they can collect data and know exactly how big
(36:39):
the problem is. So we can provide solution or
pro fashion addition to the protection of people with
Albinian. Provision of protective gears
for UVA is to see how we can make educational institution
build accessible to people with albinism.
The provision of learning a devices that will help people
(37:00):
with albinism learn more to knowexactly the treatment of the
socio economic status of people without been assuming because
also the economic oversea is an very important thing when it's
gone to talking advocating for the guides for people.
(37:21):
Because if they are accusing youof witchcraft and you're also
poor people who accuse you more that you wish because you cannot
provide for yourself and you look dirty all the time.
You wear on clean clothes, you wear clothes that are not like
presentable and you cannot shaveproperly.
(37:45):
You cannot keep yourself, you cannot provide popamine for
yourself. So you look tattered, you look
not presentable. So when people see you that you
beat beach calf and other thingstowards you because of that
particular situation that you'rein.
So if the livelihood project is being like done, that will help.
(38:07):
And also when you're doing census, you ask people about all
those things will help to know exactly how the poverty is
within the community is how muchhow many people are with
albinism inside you in general, you understand that will help
the government to to to share the wealth of the nation
accordingly because they know exactly the number of people
(38:28):
with albinism and they know where they are, the location
that they are, the location thathave more people with albinism.
So when they are providing like sunscreen or sun at a
sunglasses, they know where to send more, where to send less.
And also it will help the organization like failing
association to reach out to its members in those particular
(38:50):
regions or the particular communities that will help
immensity and even donor partners will have a valuable
assets to work on like they haveinformation to use to, to really
help out people with albinism inSierra Leone.
They really need to do that. They do not to know the number
of people with albinism those are that are educated, those are
(39:13):
dropouts, how many kids that aregoing to school?
Those are not going to school How many older people who are
with albinism you understand andthat's when it decide against
the population like that. You definitely know what to do,
how to target, which organization you directly take
care of the kids with albinism, which organization, what attack
(39:36):
like employment to know exactly how many people have
certificates and diplomas to. By that way, we would just lose
the life of people with albinismwithin Sierra Leone and.
Confirming the stigmatization, Do you have a message for people
who all misconceptions about persons with albinism?
(39:58):
Yeah, the message is very simpleand clear.
We are human beings like anyone else.
We breathe, we eat, we use the the the other room to the
restroom just like any other bossy.
Yes, we know we have challenges because we lack Melanie.
(40:20):
That's the only thing is a genetic condition.
It's not contagious. It's I will not say church and
then albinism transfers to you directly or at that instant.
So people need to know that we are just as human as you and she
will treat us right. Then the idea or the knowledge
(40:43):
to that we have will be shared. We we will also contribute to
national development and the name calling the neglect the ill
treatment, the inhuman treatmentof people with albinism by them
out there that are stigmatizing and discriminating us.
(41:04):
It's causing people to have mental health issue.
It's causing people to self hatethemselves.
It's causing people to like think about committing suicide.
So that simple action, that simple thing that did doing to
us that they seems like it's nothing to call somebody names
that they don't want to be called.
(41:26):
Not involving them in activitiesthat they're supposed to be
battles, not giving their rightsto them, not try to protect them
from these harmful practices andaccusations.
And as student name from developmental activities in all
states of life will cause valuable parts of the population
(41:49):
within Salient to be left out and without the knowledge.
We have people who are brilliant, we have people who
can commit the national development.
We have people who can contribute immensely in all
walks of life. If the provisions, if the
(42:09):
reasonable accommodation is beengiven to people with albinism,
then we can contribute to all walks of life that they're
doing. And we are saying that mutually
embraced inclusion and say no todiscrimination because simple
(42:30):
provocation or simple name calling and 'cause somebody to
take Israel alive. So if you don't want people to
commit suicide because of the words she spoke, the names you
call people that they don't want, stop discriminating and
neglecting or stigmatizing people without being using
(42:52):
insalien. Thank you so much.
Thank you. Is there anything else that you
want to be sure to discuss with us today for the listeners to
hear? Everyone listening to the
podcast should see how they can help propagate the information
(43:15):
that they have gathered today that albinism is a genetic
condition, it's not contagious. People with albinism are just
like any other person. That our simple name calling and
staring if it's meant to people with albinism will cause people
to hit themselves and which we don't want to commit mental
health issues that they should stop and see how they can reach
(43:38):
out to the organization if they want to support the work that
the organization is doing. Also, you can reach out to the
organization. I I believe you have the website
and all would definitely you go on www.albinismsaloon.org or you
can reach out to our Facebook page that will help.
(43:58):
You can e-mail us on slap1.sl@gmail.com.
That's what you able to reach out to us because we need as
small partnership as possible topropagate the issues of people
with albinism. Honestly, we're at a point now
in lies globally, climate changeand increase it is affecting
(44:24):
people with albinism more than people that are not with
albinism. I cannot say the climate change
is not affecting that. The increase, it is not
affecting everybody and the world right now, but people,
it's albinism are suffering the more because prior to the issue
of increase eats and all, we have been having skin cancer,
(44:47):
skin problem, blemishes, you know, skin cancer issues.
With the advent now this climatechange issue, the increase eats
and all, we are suffering heavily, immensely.
Even us protecting ourselves, wearing long sleeve, putting on
sunscreen where hard sunglasses.We're still suffering.
(45:08):
We're still having some blisters, we're still having
some dark spots, all because of the UVA's from the sun and
people that are working on climate change issues.
Because when your skin also is damaged, like you have blisters,
you have taxports and all, they will call your other names.
They will call you leopards, they will call you ghost, they
(45:30):
will call you devil, they will call you that, say zombie.
Just all those names that they are calling you, how can you
cope in life with all those names?
So they are warranting some witchcraft accusation too,
because your skin looks bad. And people, when your skin
looked bad, they said you're a witch, you don't look good, You
don't look up people who want toassociate themselves with you.
(45:53):
That's what caused people's lifementality.
They would commit suicide because of the way society is
fitting them. And we want people who are
working on climate change. This is the mitigation of it.
Should definitely see how they can work with people with
albinism or they say, you know, association of persons with
albinism because we can reach out to it would have been very
(46:14):
fast within the community. So we are not in isolation.
We have an open door and open arms to everybody that wants to
work with the organization in Sierra Leone.
We have announced. And then definitely, I know you
guys will post links to our websites and you can contact CIA
and Josh and they will definitely reach out to us.
(46:35):
Yeah, good snap, not bad now. So thank you for having me in
your podcast today and I will bethe information that I've given
on behalf of the Sailing Association of patients with
Albinism helps in propagating the issues of people with
albinism, not just in sailing here, but globally.
And we hope to come back on the podcast.
(46:59):
Again, thank you for having me. Thank you so much for joining
us. It's been quite wonderful having
you here and we'll definitely invite you back to welcome
anytime you have something to share, whatever that is if you
want to just the more this message gets out there the.
(47:19):
Better, yeah, the more we have Also before I forget, I should
recognize Scenica, there's a organization in the UK that's a
little bit of fun for us to see how we can reach out to people
who have health issues where we is an open phone that we can
use. So I want to recognize them as
(47:40):
they have been helpful to the organization to stop where and
also I'll definitely try to accomplice CNDP medical
assistance in Lancaster University.
You that giving us the platform yeah today and all of the
partners that have been helping us in all members of the
(48:01):
community of people with albinism and say you and family
member because when you're talking about albinism, you have
to involve the pains in order toreally see family members of
people with albinism because thestigma is a blank just because
you have a possibility with albinism within your family.
(48:22):
People are associating yourself.If I if I get married to
disposing well definitely if that's a child with albinism
because disposing is elated or is it broader to a possibility
that we are assisted to a possibility with albinism.
This issues that they need like very bored people are suffering
(48:44):
just because they have single person within a family with
supposed to be and that's also because people are accusing them
of that. They turn the hate to that
particular person without being with him because it's the cause
people will see. Yeah, the cause of people
neglecting the people talking, discriminating to me and people
accusing me of being carry out the gene of a person without
(49:05):
being in them because you're my brother or you're my sister.
So it's complex and it's very, very challenging for people with
albinism and their families downin Africa.
Here. It's very, very serious because
the we black people think they are.
They are thinking like they're being discriminated in a white
(49:28):
dominated country in the Westernworld.
That's all people with albinism are feeling down here in Africa.
You know, you whites pretend black dominated dominated Konski
or continent. You've been paid like this.
Just the look people will start this community in you.
(49:50):
So the pains that they are feeling there, we're feeling the
same pain down here. So people should understand that
too. Thank you, Jay.
Thank you, Jay. Thank you for joining us for
this episode of Witch Hunt. Join us every week.
Have a great today and a beautiful tomorrow.
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