Dwarfism is a health condition that causes a person to be very short. You can’t know how sad and lonely it feels to be having a great day and then to be made to feel like a freak for sale. To be minding your own business, feeling part of the world and a valued member of the community, only to feel cast out again because you are living with a condition you cannot change.
In Kenya, dwarfing conditions are very rare, and so their frame of reference is likely to be just what they have seen on television and film, or some other arena, hence people may not understand the amount of public scrutiny and ridicule a person with dwarfism deals with on a daily basis. You may also not know what it is like to be filmed in public or photographed by strangers without permission, and how common it is to be shouted at from different angles.
Human beings come in all shapes and sizes, and we have over 200 different types of dwarfism. Many conditions of dwarfism can have some medical complications, but most people have an average life expectancy and are productive members of the society.
Eighty per cent of people with dwarfism have average height parents and siblings. However, some types of dwarfism are simply a genetic change at conception, which happen to have very visible results. Some can be inherited genetically from one or both parents.
A child with dwarfism is born in 1 per 25,000 births, and very few doctors know much about the various dwarfism conditions. It is important to find a doctor who specialises in dwarfism for ongoing care, especially if there are any medical complications.
Alice Wairimu, 17, is one inspiring young woman living with disability and a student at Uthiru Girls Secondary School, who missed a chance to attend one of her favourite schools in Kenya after being turned down because she is a dwarf.
She was born with dwarfism and has lived with it ever since. Despite having the condition, Alice was able to lead a normal life and she could carry out all her assigned chores.
“When I was born, my parents did not know I had any problem because I had the weight of a normal child and I did not seem to have any problem. But as I grew up, my parents noticed that I was not growing tall. I could also do everything a normal child does.
“My parents, however, sought help from hospitals to find out if I had a problem but no problem was found. The choice they had was to accept me, although it took much time for them, especially because my siblings were normal.”
What problems did she face while growing up?
“Growing up, I noticed I was different from other children, and so I became very shy, especially because people would stare at me while walking alone or with my family. I would go to places and people are just staring at me. Ata kwa matatu, mtu anakuona anatoa kichwa nje,” she said.
“My condition could not allow me to walk for long and I could not face strangers or even my family members. I would seclude myself as much as possible until when I was around class six at Dagoretti Special School.
“I started interacting with normal kids. That was when I started accepting myself and the people, too, started accepting me with my condition.”
Alice did her KCPE exam and scored 375 marks, which would secure her a place in one of the best schools in Kenya. This, however, did not happen because the school denied her the opportunity to be one of them, claiming they did not have facilities for children with special needs.
“I was called to a school in Meru, but since it was too far, I could not join there. I was later taken to a certain public school in Nairobi and the principal told me she could not admit me because of my height and that I could require so much, which the school could not provide. That experience made me feel like I did not belong to the society because I had qualified with my grades but later on, I accepted that and moved on.
However, all this has not dampened her spirits. “I believe there is nothing I cannot do. Be courageous and live once without planning for tomorrow,” she said.
Her biggest pillar is courage and the love she has for God.
“Growing up, the biggest challenge I faced was discrimination because at times, you are in a place and the people there do not want to accept you. Confidence has always helped me and the love I have for God.
“When I feel like I am down, I always remember the love and the word of God, and that is how I have always overcome any fear. My family and even my friends, too, have helped me become who I am now.”
Alice’s best subjects are languages and computers. “I would love to be a lawyer because I want to create awareness. And if I become a lawyer, I will be able to fight for those who can’t fight for themselves, and for children with disability, and even create a platform where they can air their grievances and even mingle with people without being discriminated,” she said.
Her school fees is catered for by an organisation called Feed The Children. And Uthiru Girls’ School gives her the special care she needs as a dwarf.
“I have a stepping chair that I use to get to my bed, another one that is in the laboratory and even in class. I have a special seat that allows my legs not to hang when seated. They have done enough,” she said.
“I wash my clothes and my schoolmates help me hang them on the clothesline. I love doing my work without associating with or disturbing people.”
Alice would love to meet President Uhuru Kenyatta. “I would love to meet our President and tell him that I really appreciate his work and for being a cool President. I would also tell him to look into the matters of people with disability because they have the potential to go to school and perform like any other Kenyan child. Some of their parents lack school feels and other parents hide their kids, so I would request him to bring a ministry that will fully support them because they have great minds,” she said.
Her message to parents with children with special needs is:
“Please note that your support means the world. So support us and we will not disappoint you. Love your children with special needs and appreciate them without hiding them, but instead expose them so their potential can be recognised. I thank Association for the Physically Disabled of Kenya (APDK) for taking care of me.
Alice is also a good singer and dancer.
“I have gone to Italy to perform a dance and raise money to come and do a project here in Kenya,” she said.
The UK government will on Monday and Tuesday co-host its first-ever Global Disability Summit in London alongside the Government of Kenya and the International Disability Alliance. The summit will secure ambitious commitments to make a tangible difference to the lives of millions of people living with disability around the world.
Ahead of the summit, British High Commissioner Nic Hailey hosted a farewell reception for the Kenya delegation attending the summit, where he gave his speech regarding the way forward.
“We are committed more than ever to ensuring that people with disabilities are not left behind, that they are supported to contribute their full potential to, and benefit from, Kenya’s prosperity,” he said.