Honorine Tuyishimire was born with dwarfism. Her childhood was about enduring the agony of being treated as ‘an outcast’ in society.
As a child she grappled with so many questions. Questions about why she did not look like other children. As other children went through the normal childhood development stages and grew in size and height, she realised it was not the case for her.
Now 30 years, as a child she could barely go to school like the rest because she couldn’t handle the long distance. Also, the discrimination she faced made it even harder for her to be in school.
“I was not able to attend school very often because my condition made it hard for me to walk long distances. Even when I tried to wake up as early as possible to start the journey, I couldn’t make it. I was always late,” recalls the 30-year-old.
Despite her condition, her parents were very supportive and determined to see her continue with her studies. They moved to Kimironko, a Kigali suburb, with her other two siblings to live closer to the school.
Tuyishimire says she was brilliant in school, but found it hard to pass exams.
“It was because I lacked speed in writing. I was always challenged by time and handed in my papers with unfinished work,” she recalls.
She notes that many school structures don’t favour disabled children and that this makes it even harder.
“The blackboards are placed very high, and so I was excluded when it came to participating. I couldn’t go to answer questions like other children. It was also hard sitting on the benches just like the others; the desks were high and it made me feel tired,’ she says.
When she joined boarding school, the beginning was frustrating.
“In boarding school, it was very hard at first as I was supposed to take care of myself. I had to fetch water and wash my clothes. But my peers turned out to be helpful, they helped me in many ways,” she recalls.
With this experience, Tuyishimire describes living life as a disabled person as a very painful one. “We face all sorts of discrimination, little people struggle to live and fit in with their families, at work and society in general,” she says.
Tuyishimire recalls scenarios where people would run after her, laughing at who she was, which always left her shattered.
“One day I remember I had gone to the salon to have my hair cut and I met primary pupils who ran after me, they surrounded me, laughed at me, touched me and said all sorts of words concerning my size.They only left when someone who knew me intervened,” she recollects.
She says that even at school, such scenarios would happen but she had to endure. “Many people living with disabilities find it hard to endure all these struggles and this is why most of them drop out school.”
On labour market
However, none of that has held Tuyishimire back from living the life she wants, nor has it stopped her from pursuing her dreams.
Born and raised in the suburbs of Kabuga sector in Gasabo District, Tuyishimire has had to fight to become the woman she is today.
Regardless of all the struggles she had to go through, Tuyishimire managed to continue with her studies and now, she is pursuing her Master’s degree in Project Management.
She is also a project manager at a non-government organisation.
For disabled people, finding a job is another hurdle, as she came to learn.
“Most people with disabilities find it hard to pass the written exams for employment, not because they are not competitive or smart enough, but because some employers label them ‘less able’ to perform a task,” she points out.
She also notes that even when one is lucky enough to pass the written exam, it’s hard to pass the oral interview.
“If one passes exams and goes to the interview level, they are asked questions which undermine them. They are asked how they will be punctual as they don’t have speed in walking, how they will sit, and other ridiculous questions just to show them that they don’t fit in at the workplace,” Tuyishimire adds.
Appeal for appropriate facilities
Tuyishimire says that little people need specialised facilities.
“For example, when it comes to attending meetings, we only have one hotel which can accommodate us. Others only have these modern toilets and we can’t use them,” she says.
A survey which was conducted by Uwezo Youth Empowerment Association, a platform which brings together youth living with disabilities, showed that 71 per cent of people with disabilities are unemployed, including graduates.
Omar Bahati, the president of the association, says the challenges are general for all disabled people and that despite many efforts put in place to help people living with disabilities, the journey is still long.
“Youth are being sensitised to create jobs instead of applying for them, but it’s more complicated for people with disabilities. Besides, few of them have been able to get a chance to graduate, which is another challenge,” Bahati points out.
“Others can’t find services they need because of their physical disabilities, for example in banks, little people can’t reach the tellers because they are high and there are no other options for them. This is the same challenge faced with people with physical impairment,” he says.
Bahati appeals to the government and society in general to have policies in place and guidelines to follow in order to help people with disabilities enjoy equal rights with others.
“The law today indicates that all new constructions consider people with disabilities in their plans, but the old ones are still there and in use without respecting new guidelines. People with disabilities should be helped to use available opportunities as normal people,” he says.
Emmanuel Ndayisaba, the executive secretary of National Council of People with Disability (NCPD), says that the challenges are still present; however, a lot has been done to address them.
“Rwandans now understand that people with disabilities have rights, just like any other person. We are continuing with campaigns so as to change the mindset completely. We use every opportunity like meetings and events to educate people on the rights of people with disabilities,” he says.
“Besides, NCPD has helped in creating groups of parents who have children with disabilities in order to share experiences, leading to changes in the mindset amongst communities regarding people with children who live with disabilities,” he adds.
Ndayisaba also says that they are working with Ministry of Public Service and Labour (MIFOTRA) so that in the new work structure, people with disabilities are given opportunities and jobs according to the law and regulations, and not for grace or compassion.
Also, NCPD suggested to MIFOTRA that job examination papers and exam regulations also consider people with disabilities like the visually impaired or people with hearing loss, he adds.
Countrywide, five ICT centres for people with disabilities were already set up with the equipment to help them acquire ICT skills.
These centres will also be used to prepare specific job examinations for people with disabilities and be used in various school activities for them.
Children with disabilities can now access special and normal education and be taken care of.
Recently NCPD conducted an evaluation exercise to see how far public institutions are complying with the 2009 ministerial order of reviewing buildings and putting in place new facilities for people with disabilities.
Ndayisaba observes that many have already complied, however, others haven’t. There are about 500,000 people with disabilities countrywide as per official statistics.
According to LadislasNgendahimana, the spokesperson at the Ministry of Local Government, the ministry is dealing with the social protection aspect to ensure that people with disabilities benefit from various programmes while NCPD deals with ensuring that the rights of people with disabilities are respected through advocacy.
What do you know about dwarfism?
Dwarfism occurs when a person is unusually short. Dwarfism itself is not a disease and, as a result, it has no single medical definition. Dwarfism is short stature that results from a genetic or medical condition. Dwarfism is generally defined as an adult height of 4 feet 10 inches (147 centimetres) or less. The average adult height among people with dwarfism is 4 feet (122 cm).
Many different medical conditions cause dwarfism. In general, the disorders are divided into two broad categories:
Disproportionate dwarfism. If body size is disproportionate, some parts of the body are small, and others are of average size or above-average size. Disorders causing disproportionate dwarfism inhibit the development of bones.
Proportionate dwarfism. A body is proportionately small if all parts of the body are small to the same degree and appear to be proportioned like a body of average stature. Medical conditions present at birth or appearing in early childhood limit overall growth and development.
Some people prefer the term “short stature” rather than “dwarf” or “dwarfism.” So it’s important to be sensitive to the preference of someone who has this disorder. Short stature disorders do not include familial short stature — short height that’s considered a normal variation with normal bone development.
Most people with dwarfism have disorders that cause disproportionately short stature. Usually, this means that a person has an average-size trunk and very short limbs, but some people may have a very short trunk and shortened (but disproportionately large) limbs. In these disorders, the head is disproportionately large compared with the body.
The most common cause of dwarfism is a disorder called achondroplasia, which causes disproportionately short stature.
This disorder usually results in the following:
1)An average-size trunk
2)Short arms and legs, with particularly short upper arms and upper legs
3)Short fingers, often with a wide separation between the middle and ring fingers
4)Limited mobility at the elbows, to mention a few.
Proportionate dwarfism results from medical conditions present at birth or appearing in early childhood that limit overall growth and development. So the head, trunk and limbs are all small, but they’re proportionate to each other. Because these disorders affect overall growth, many of them result in poor development of one or more body systems.
Growth hormone deficiency is a relatively common cause of proportionate dwarfism. It occurs when the pituitary gland fails to produce an adequate supply of growth hormone, which is essential for normal childhood growth. Signs include:
1) Height below the third percentile on standard pediatric growth charts
2) Growth rate slower than expected for age
3) Delayed or no sexual development during the teen years
When to see a doctor
Signs and symptoms of disproportionate dwarfism are often present at birth or in early infancy. Proportionate dwarfism may not be immediately apparent. See your child’s doctor if you have any concerns about your child’s growth or overall development.