Why Children with disabilities do not survive in Africa?
Warning: The following article contains very disturbing content.
Disabled babies being drowned in rivers * Children being severely beaten * Girls being raped * Teens chained to pillars for years * Excluded from all activities, abandoned, abused, murdered and left without treatment; People with disabilities in Africa are living without hope.
Working with people with disabilities during the past 7 years was fascinating and adventurous path, and I have been researching continuously about the challenges and possible solutions. I have read reports of the WHO, UN, Unicef, JDC, Israeli government reports, Kenyan reports, USA reports and many more. During the past 3 months Georgetown university MBA students performed a global markets research on people with upper body disabilities for my company, and lately I have been researching Ghana. I have met hundreds of occupational therapists – mainly from Israel and Kenya, and some from Nigeria, Brazil, South Africa, Ghana, India and the US. I visited hospitals in Israel and Kenya – the largest for rehabilitation and assistive devices, initiated focus groups with therapists, tens of training session, a large and first awareness raising convention in Kenya, initiated team for product development for the elderly, visited small clinics in both urban and rural areas, heard stories, evidence, talked with people with disabilities around the world, with government officials, special education teachers, priests, activists, NGO's, and more.
Nevertheless, I never revealed the most difficult facts or stories. I was very careful not to let it rise to the surface and to overwhelm the person standing in front of me. It didn’t seem fair to burden my readers or my partners with the dreadful evidence I found. I kept them to myself with a mixed feeling of shock and embarrassment.
2 years ago, in addition to Cassit Studio, I established another company called Cassit Orthopedics. This company's goal is to supply affordable and durable medical hand supports to people with disabilities around the world, starting in Africa. I want to break the market high priced solutions and allow hundreds of millions of people with disabilities live in joy and be an active and independent part of society.
When I talk about our medical products importance, I usually became frustrated because I can't explain enough how significant that is, if I don't talk about the situation today and in contrast – what a tremendous change we are going to bring to the world. It burns in my bones and I must say it.
So, if you believe it will be too much for you - please stop reading here.
No therapists in special school for children with disabilities
One of the hardest moment I experienced in Kenya was in a special school for children with disabilities. Here I am, coming to see the wonder of a school designed for children with disabilities. While talking to the amazing teachers, I realized they had no medical personnel nor they knew what kind of disability the children had. The will to help those children was there but the knowledge or the tools for it were absent. Than it was clear that is wasn't a school for children with disabilities, but the only school that agreed to accept them.
Children with disabilities are victims to neglect, severe abuse and murder
Last month I started researching about Ghana, that is considered to be relatively advanced among the African countries. I was shocked to read and watch the evidence about disabled babies being murdered or abandoned, disabled people being chained to a pillar for years, about the prayer camps where children with disabilities are severely beaten in order to "expel the disability". I read about "magic medicines" that make them bleed from their eyes and sometimes die. You can watch the evidence in Ghana on Sophie Morgan's film:
BBC Documentary 2015 The World's Worst Place to be Disabled.
*It is important to note that all the testimonies about what is happening in Ghana are evidence of what I read and watched on video and not firsthand.
In the Awareness Raising convention we held last year in Kisumu, in the rural areas of Kenya, I remember one brave woman using her crutched to stand up and speak. Her speech was eloquent but her voice trembled when she spoke about little girls with disabilities being frequently raped and sexually exploited. I never heard about so many cases of severe abuse before I came to Africa, but the stories about rape, neglect and abuse came so often to my ears until it was almost too much to bear.
Children with disabilities are hidden in the houses and don’t see the light of day
"Disability is a punishment from God" – A common belief in Kenya is that if someone has a disabled child, it means he is punished for his sins, and many who don’t want other to know they have sinned, hide their child in the house.
I was aware to this phenomenon in my first visit in Kenya during 2015. My Kenyan team explained about the different ways they are trying to fight it, and to locate those neglected children. Their stories about children that were locked in the houses for all their lives were horrified, and in particular because children with disabilities who always require special attention and are being left without almost any attention or often being abused. Children with disabilities that are treated as less than human, with no hope, and aren't allowed to go to school.
For example, cerebral palsy is a disability created around the period of birth and infancy, and can be prevented in large percentages by birth monitoring and awareness, which do not exist in most of the continent. We don't have the exact numbers on how many children with cerebral palsy there are in Africa, but the numbers are high. The range of disability severity with C.P. (cerebral palsy) is large: a child can live with mild disability in one of his hands or severe disabilities in 4 four limbs including cognitive impairment and inability to communicate. Children with mild to moderate C.P. can often be rehabilitated and live an active life, while children with moderate to severe C.P. will not reach adolescence without care and attention. In addition, mild to moderate C.P. will mostly worsen without treatment.
That is another reason, why many children with C.P. in Africa die way too soon.
Attached below a very sad age distribution chart from a government report, presenting that 90% of people with disabilities in Rwanda are children, meaning they don't reach adulthood.
"CENSUS OF PEOPLE WITH DISABILITIES IN RWANDA" / REPUBLIC OF RWANDA, Ministry of Local Government & AFRICAN DECADE OF PERSONS WITH DISABILITIES & RWANDA NATIONAL DECADE STEERING COMMITTEE, November 2010
Poverty and disability in a vicious cycle
Both adults and children with disabilities are excluded from education and employment. This exclusion prevents them from being able to make a living and get out of poverty. In fact, people with disabilities are the poorest people in the world. In addition, if a person was in the middle class, had an accident or illness that left him disabled - he almost certainly will become poor. Also parents to children with disabilities can’t find a job, and are often not allowed to bring their disabled children to work, becoming very poor. In the amazing NGO, The Action Foundation, foundee by the inspiring Maria Omare, in Kibera Slums of Nairobi, Kenya, they take care of the children so the parents can go to work.
In a country where the health and welfare system is not organized, people with disabilities are pushed to the edges of society and being forgotten for prolonged suffering and premature death.
In Kenya, I found huge differences in attitudes within the population – and it's important to me to emphasize I met many inspiring and very special people who dedicate their lives to save and take care of people with disabilities.
People that became disabled never leave their houses
A few years ago I hosted in my studio an industrial designer from Brazil, who told me about the situation of people with disabilities there. The sentence I remember most was that "anyone who went through a car accident in Rio will never be able to leave his house again." In a metropolis like Rio which is not accessible to wheelchair users, in her words, "the life of a person with paralyzed legs is over". There is no access to the clinic, public services, work, study or just go to the grocery store. If a person does not have someone to take care of him and do all the errands for him - and usually he does not, he will have to get by himself, inside the house. In the unpaved roads of Africa the situation is the same, plus inaccessible and costly transportation that doesn't allow them reach a clinic.
Albinos are being murdered for their organs
"For Agness Jonathan, every day is a gamble with her children's lives. Simple questions like whether they should go to school carry an unimaginable risk of death and dismemberment to satisfy a barbaric demand. This is because her daughters are living with albinism… according to a newly released Amnesty International report, (albinos) are being hunted like animals in Malawi where their bones are sold in the belief the body parts bring wealth, happiness and good luck."
4 Examples for better future
In Kenya, therapists actively engage in explaining parents the medical cause of the disability (In contrast to the common superstitions). The APDK (association of people with disabilities of Kenya) give street shows with disabled people and later sends the actors to the crowd to answer questions about disabilities. Activists go to schools and ask young children if they have a brother or sisters hidden in their homes and then try to rescue them. NGO's for children with disabilities such as TAF = the action foundation in Kenya, mentioned above, also present to parents good examples of children with disabilities that went to school, study and play with their friends, and have a joyful life with hope for a future.
Here is an example of a video I took of a child with cerebral palsy, in TAF in Kenya, using our splint to write with his right hand for the 1st time in his life:
Independent with Cassit Splint 2015-2016:
This child became much more independent and his is in school writing and playing.
WHAT WE DO
Cassit Orthopedics offers a 3 pillars solution:
The Feasible Solution: Orthopedic hand splints that enable children and adult with disabilities return writing, working, independent eating, showering, playing and more. Our splints are affordable, they fight stigmatization by being designed as a sport product, and overcome accessibility challenge by being customize without electricity nor equipped clinic, in the rural areas, in 5 minutes.
The Know – How: Most therapist in the world are not trained to make splints or assistive devices. Our company provide easy training sessions to therapists – how to adjust splints and assistive devices. We work with both Israeli and local most experienced occupational therapists and instructors that are building a "Train the trainer program" which is adjusted to different levels of knowledge.
The Change in Perception – We held the 1st Awareness Raising conference in Kenya and we plan many more, for parents of children with disabilities, teachers, priests and caregivers. In many places, just bringing the people together to talk about disability is overwhelming and enough, because they have never done it before.
If I asked myself why most of the people with disabilities in Kenya are children and met only a few adults now I found the answer; Children in Africa do not survive to reach adulthood. There is no awareness and no knowledge of disability, its medical causes and treatment.
Shedding a light on the lives of people with disabilities should not be a matter of good deeds. We are responsible to one another, and the world's situation today for people with disabilities is a reflection of our actions and desires. Ignoring this situation is impossible, and to me it is no less terrible than seeing someone seriously abused in the middle of the street and just keep walking. When we become aware of a certain subject and it troubles us, we know how to stand up and shout, get up and do something about it. Well, now you know.