Your limitations are all in the mind

Friday November 10 2017

From left: Ali Said, Sarah Wanjohi, Joackim

From left: Ali Said, Sarah Wanjohi, Joackim Mwangi and Wangui Njee are different but capable too. PHOTOS| CHARLES KAMAU, DENNIS ONSONGO 

By LILYS NJERU
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In a society that seems to value physical appearance more than attributes such as character and intelligence, it can be challenging to co-exist with others if you don’t fit the box marked, ‘attractive’.

It is doubly challenging if you’re a young person with disability.

 

Ali Said

29 years

Founder: Youth against AIDS and Disabilities (YAAD)

Condition: Cerebral palsy

Ali was diagnosed with cerebral palsy when he was six months old. His family did not know much about the condition, since it was uncommon where they lived.

Unlike other young people who have countless childhood memories, his are just a handful.

“I was shunned by most children because I couldn’t run or play like them. My grandmother, who raised me, was afraid that I would hurt myself while playing, and would caution me against going out. While this hurt, what pained me most was when the very same children I yearned to play with imitated my inability to walk like they did.

Due to my condition, I was quite slow in class, so my father opted to home-school me until I got to Class Seven.

Thankfully, in secondary school, I was treated like the other students, who were very supportive of me. My teachers would remind me that I was able, just like the others.

When I completed my secondary school education, I moved in with my sister-in-law who lived in the city. She taught me how to speak up and how not to let my condition be an impediment to my ambitions.

Just before I joined high school, I was 15, my homeschool teacher asked me what I wanted to do with my life, and I said that I wanted to fight for the rights of people with various disabilities, having seen the disregard with which pupils in special unit class in my former primary school were treated.

In 2012, I founded Youth against AIDS and Disabilities, a community-based network located in Eastleigh. In 2015, I was nominated Person Living with Disability of the year by WARD women.

When it comes to relationships, the biggest challenge I have is that growing up, I didn’t mingle with the opposite sex, making approaching one difficult.

Besides that, I would not want to get involved with someone who is only with me out of pity. I would like someone who will accept me as I am. When we hold mentorship programs, one of the things that I remind the young people who attend is that true beauty is in their character, not in their physical appearance.

 

Sarah Wanjohi

Age: 22 years

Student

Condition: Albinism

Sarah, 22, was born with albinism. There is no history of the condition in her family, so it came as a shock to her relatives. Her father walked out on them four years after she was born, and she has no memory of him.

“Once in a while, I wonder whether he left because of me, but I am comforted that my mother raised me just like she raised my elder sister – with love. My close relatives too treat me like they do other children in the family, and for that, I am grateful.”

Sarah, who grew up in Umoja Estate, started becoming conscious of her condition while in Class Eight, when adolescence kicked in.

“We were on a school trip to the Coast. On that day, we were visiting Mamba Village, a crocodile farm. Among the reptiles were a few albino crocodiles. Some of the pupils started laughing out loud, calling out my name as they pointed at them.”

Hurt, she almost started crying, but instinctively knew that was the motivation they needed to continue ridiculing her.

Instead, she responded with a joke that silenced them.

“When you are born different, you learn to be expressive and stand up for yourself at an early age. While my family has been very supportive and accepting of me, it is different when I walk out the door – I face an irrational hostile attitude from some of the people I meet as I go about my day. Some stare too much while others whisper about me in my presence.

Recently, I received a text from an acquaintance asking me out on a date. When I declined, he told me that he didn’t expect that “albino women” could turn a man down. It is sad that some people think that we don’t have principles or that we are ready to settle for anyone that shows an interest in us just because our skin colour is different. When I look at myself in the mirror, all I see is beauty; I believe that I have an equal chance in life as others.

My friends  enjoy my company, and fitting into cliques has never been hard for me, probably because I have accepted myself.”

Growing up, she wanted to be a model, and not even the prejudice that follows her like a shadow could deter her.

Sarah competed in the Mr and Miss Albinism 2016 beauty pageant, taking the 2nd runners up prize, an accomplishment she is proud of. She started modelling last year, and has, so far, worked with Hivos International, an organisation that supports a number of causes, and Sportspesa.

Her other skills include 3D animation and camera lighting.

“Albinism has not stopped me from pursuing my dreams and even falling in love - I am dating a man without this condition, and he is a constant reminder that beauty cuts deeper than skin colour.

If society’s definition of beauty makes you feel less beautiful, my advice is that you love yourself more. Look at your difference, whatever it is, with a different perspective and celebrate your uniqueness.

 

Joackim Mwangi

Age: 29

President, Short Stature Society of Kenya

Condition: Dwarfism

At 2ft.8 inches, Joackim is standing tall, and if you asked him to write down his wish list, growing taller would not feature.

“I noticed that all was not well with me when all my classmates grew taller than me. While in Class Four, you would have confused me for a Class One pupil. My grandmother assured me that there was nothing to worry about, telling me that my grandfather was also a short man.

It was only when I got to class seven that I figured that I was a dwarf. There are many types of dwarfism, mine is pituitary dwarfism, a condition in which the pituitary gland does not make enough growth hormone. This results in a child’s slow growth pattern and an unusually small stature. In primary school, my peers often teased me about my height, but it was not a big deal then. We would all laugh about it and move on to the next joke. It helped that I was bright, and therefore a favourite of many teachers.

Things however changed when I joined secondary school. The school was not close to home, so most of the faces were new.

The jokes about my height affected my self-esteem so much, I wanted to drop out of school in Form Two.

When word reached the principal that I was considering quitting school, he called a school assembly and asked me to talk.

I remember telling my fellow students that I was just like them regardless of my short stature. From that day on, they respected me, and I never heard a mean joke directed my way again.

I was never discriminated against or given special treatment at home, a factor I believe challenged me and gave me the license to be myself.

When my mother was allocating duties to my siblings and I, she did not consider my height.

No matter how challenging the tasks were to a short person like me, she would leave it to me to figure out how to go about getting them done.

When I completed secondary school, I got a scholarship to study a course in media, sponsored by Focus Youth Initiative, a community based organisation in Ruiru. I am currently the main actor (katuosis) in Jungu Kuu a program that airs on Sundays on K24 at 8pm. Besides acting, I make money from tenders reserved for special groups.”

Joackim, a father of one, explains that although most women prefer tall men over short ones, finding a girl to marry was not hard for him.

“There is this cliché about girls wanting tall, dark and handsome men, but I believe that what most want is a loyal and loving man above anything else. It is however true that most men with dwarfism are dismissed by women due to their height, which is unfortunate because they never get the chance to prove how loyal and loving they can be.

My sense of humour won over my wife. We have been married for a year now. Instead of focusing on my height, she focused on my character. She treats me with respect.

I urge women not to only consider a man’s looks, but character and personality too.

In 2013, Ruth Mueni, the deputy president of Short Stature Society of Kenya, reached out to my three friends and I about forming an organisation that would advocate for the rights of those with dwarfism in Kenya. We all had faced many challenges when growing up, and through the organisation, we hope to make things easier and create a better environment for dwarfs in Kenya.

Currently, the organisation has more than 1, 000 registered members across the country.

I am comfortable with my height, it is the society that keeps reminding me that my height is below average because they stare too much or sympathise with me, yet I don’t require it.”

 

Wangui Njee

Age: 28 years

Vitiligo Ambassador

Condition: Vitiligo

One of Wangui’s most precious souvenirs are her childhood photos because they are the only reminder of her childhood memories and what she looked like as a child.

She was a normal child with a ‘normal’ skin tone and looked just like the other children around her. One afternoon however, in 2004, her life changed forever.

“I was a Form Two student at Pangani Girls Secondary School.  As we were walking to the dining hall for lunch, one of my classmates told me to wipe off a white blotch on one of my eyelids, thinking that it was chalk dust. After several attempts to wipe it off without success, I sought help from the school nurse, who recommended that I seek medical attention from a dermatologist. Then, I had no idea that there was a condition called Vitiligo, and was not worried, sure that it was something temporary.

My mother picked me up from school and took me to a dermatologist, who diagnosed me with Vitiligo, a condition in which the pigment cells of the skin stop producing melanin, stripping the skin off colour in certain areas.

He prescribed an ointment that solved the problem. The blotches disappeared, only to reappear behind my back a year later. That was the beginning of my struggle with Vitiligo.

By the time I was joining Kenya Methodist University in 2007, to study business administration, the depigmentation had started attacking my face, finger tips and back, and no medicine seemed to work.”

Her close friends, who knew the genesis of the condition, were unfazed with this change, and Wangui was comfortable in their presence. Away from her inner circle however, were the stares and uncomfortable questions, which made her withdraw into a shell. Her self-esteem plummeted such that she switched from day classes to evening classes and would put on a scarf and gloves to hide some of the patches.

“It was a very difficult time for me, and being a teenager, I was self-conscious about my looks - I knew that the condition would affect how people related with me, especially boys. My then boyfriend even broke up with me when the condition got worse. I used to cry myself to sleep, and eventually developed depression; my mother had to seek counseling services for me. That really helped me because after many years of wallowing in self–pity, I was able to finally look at myself in the mirror and declare that I was beautiful no matter what everyone else thought.

After graduating in 2013, job hunting proved to be harder than I had imagined it would be. I attended many interviews and, “We shall get back” became a too familiar line. Through networking, I finally got a job in a bank as a teller. I however had to quit after only three months because customers would be reluctant to be served by me.

As it stands, I know many Kenyans with Vitiligo who are denied job opportunities just because of their appearance – some employers believe that they will scare their customers away.

A former nominated Member of County Assembly for Nyeri County, Wangui believes that joining politics was the best decision she made in 2012, as it has significantly contributed to her journey of self-acceptance.

“I joined the then TNA party campaign trail as a photographer, a job that required me to interact with scores of people.

This emboldened me, grew my confidence, and taught me to stand up for myself.

As an MCA, I resolved to fight for the rights of people with Vitiligo, and came up with a bill that would see them receive free sunscreen from the government. I also advocated for Vitiligo to be placed under the umbrella of people living with disability in Nyeri, which I managed to accomplish.”

The Vitiligo is beautiful ambassador, who runs a website, vitiligoisbeautiful.co.ke, has visited more than 40 counties giving out sunscreen in partnership with the government and the National Council for persons with Disabilities through the Ministry of Health.

Besides running the campaign, she is a student at the Jomo Kenyatta University of Agriculture and Technology (JKUAT), where she is studying for a Master’s in entrepreneurship. 

“Most young people with this condition shy away from showing themselves and being out there because they fear being discriminated against and being rejected by their peers – this prevents them from leading a full life. The society needs to know that Vitiligo is not contagious, and is certainly not a curse, as most believe.”

Wangui believes that she is beautiful, and it doesn’t matter who thinks otherwise.

“Self-acceptance is the best gift you can give yourself; Forget the perception society has of beauty, you are beautiful just as you are.”