Hello Kenya! You are the first African country I have the pleasure to interview and I am very excited! Would it be possible for you to give us a brief presentation of the foundation in Kenya and explain to us what your main goals are? 

The Down Syndrome Society of Kenya (DSSK) is a parents’ initiative, non-political, non-profit organization working for the promotion of the rights and welfare of persons living with Down syndrome in Kenya. It was registered in 2003 under the society’s Act, it was successfully launched on 6th March, 2004 with an overwhelming support from both the private and corporate world.

Our main goal: 

  1. Create awareness in all sectors of the general public, healthcare professionals, education professionals, and human rights organizations.
  2. To offer support and assistance including legal, counselling, information and networking to persons with Down syndrome, parents and caregivers.
  3. To affiliate and network with local and international organizations with objects and purposes similar to those of the society.

What is it like to have Down syndrome in Africa, and especially in Kenya? Does your foundation also work with other African countries? 

Down syndrome is/was not a well-known condition in Kenya. Little knowledge by the society and the health sectors as well. There is lack of early intervention due to lack of awareness and this leads to speedy deterioration of the child’s condition. This reduce the level of educational support that children with disabilities may require throughout their schooling and ensure they reach their full potential by accessing specialist health and education professionals such as occupational therapists, physiotherapists, speech therapists and educational psychologists to support their learning. Some of these services (therapy) are not available in all government hospitals and in some cases, they are very expensive for some parents to afford. 

Some parents have been treated as outcast as in some communities, having a disabled child is seen as witchcraft hence, some children are hidden from the eye of the public hence they end up deteriorating. When it comes to education, the curriculum is not disability specific and assumes the methodologies can be applied across the spectrum of intellectual disability. Though there is a curriculum for mentally challenged learners, this curriculum assumes that all children with mental challenges are similar in terms of their learning challenges. A research has been done by DSSK with the book on our website “Critical Analysis on Access to Education for PWIDs in Kenya https://drive.google.com/open?id=1-bJ623wfDL2KN8uvS_465poHgEEAFt73 .

We currently have not been able to work with other organization in Africa. We have members from different East African countries.

How would you compare the situation in Kenya compared to other neighboring countries? 

The stigma and prejudice is faced in other African countries. There is need for proper creation of awareness.

The two main languages in Kenya are English and Swahili. During my world tour I have seen that people are often surprised that people with Down syndrome can speak two languages. In India some could speak up to four! What is Down syndrome in Swahili and could you please tell us how common it is for people with Down syndrome to speak languages? 

No Swahili word for Down syndrome. "Udumavu" has been used quite a lot by the media, but we don't find it as an appropriate word for Down syndrome. Our children are bilingual such that they can speak English, Swahili and also their mother tongue. In some cases, some can hear and respond well, meaning they understand the language well. 

Language and communication capabilities varies on the background and exposures as well.

What are the main goals of your foundation and how are you achieving them? 

Our main goals are:

  1. Create awareness in all sectors of the general public, healthcare professionals, education professionals, and human rights organizations. 

We have been able to work with media houses and our social media pages to enlighten, educate and create awareness all over the nation about Down syndrome. We have been working with paediatricians, cardiologists, for the purpose of monitoring the children and giving proper medical advices to parents and caregivers. 

We are members of National council of people with disabilities (NCPWD) and through them we are able to penetrate the government bodies in regards to the UN-CRPD and to fight for proper quality education for people with Down syndrome.

  1. To offer support and assistance including legal, counselling, information and networking to persons with Down syndrome, parents and caregivers.

Our current program- Access to justice for people with disabilities, has spear headed the fight for justice for people with intellectual disabilities through the legal systems in Kenya. We have a WhatsApp platform with well-wishers, doctors, counsellors, guardians and parents for information sharing purposes and counselling. The WhatsApp group has been an open space for parents to express themselves, it has been more of a shoulder to lean on especially during this hard times of COVID-19 pandemic.

  1. To affiliate and network with local and international organizations with objects and purposes similar to those of the society.

We are involved with local organisations (UNDPK, NCPWD, CDRA, all working for a better inclusive society for people with disabilities). We are also members of an international organization, Down syndrome International (DSI), with planned upcoming project for our youths with Down syndrome.

Your foundation is based in Nairobi. How does it spread your message throughout the whole country?

The foundation is based in Nairobi but we cut across all the counties in Kenya. We have members from all over the country, our main agenda for this year being getting a representative in each county, we hope to achieve this regardless of the COVID-19 situation.

What would you consider as the main challenges for people with Down syndrome in Kenya? 

  • Lack of clinical guidelines for the health medics hence wrong and late diagnosis. Expensive healthcare with limited health issues taken care of by national health insurance.
  • Lack of proper quality education for the intellectually challenged. Training is also very expensive.
  • Stigma from the society. 
  • Lack of employment for young adults with Down syndrome in both the public and private sectors.

How would you describe Down syndrome to someone who has never heard about it? What are the most common questions?

We try to use the simplest words possible, through the native languages, Swahili and English. Mostly we describe it as: a slight error that occurs during conception, the pregnancy is a normal pregnancy throughout, the baby is born healthy and in many cases, the health personnel might not see the signs. The baby gains weight at a slower rate, and achieving milestones might even take a bit longer than the normal babies. 

Common Questions:

  1. Why are persons with Down syndrome more alike?
  2. Is the condition hereditary?
  3. Can one have more than one baby with DS?
  4. Is there a cure for it?
  5. Is the condition related to witchcraft?

As a brother of someone with Down syndrome, I would have liked to have shared more feelings and stories about Down syndrome with other brothers and sisters. During this world tour I have also seen that foundations do not often think about that brother-sister relationship. What would you do to emphasize it?

Many organizations focus on those with Down syndrome and forget their siblings. Siblings should be involved in workshops, fun days and have an advocacy training project for those with DS and their siblings included. 

We should also open up to parents and guardians on the importance of the sibling relationship.

Do young adults have the possibility to work in Kenya? How does your foundation prepare them for the future? 

Yes they do. Private sectors are more welcoming when it comes to employing those with special needs compared to the public sectors. The organization needs to collaborate with the private sectors and push for employment for our adults with DS. Some have already enrolled into self-employment, example, we have adults who are good farmers and they get an income from it, this is with the support of the guardian. 

A self-advocacy help program through our partner DSI, which will help them fight for their rights and also boost them in terms of being successful in seeking employment.

We have workshops were we measure and weigh their capabilities and advise. Also in terms of not being left behind by the current technology, we advise parents on careers depending on the capabilities of the adult.

My sister is always surprised when she hears about people with Down syndrome in other countries. I would actually love for her to meet people with Down syndrome from all over the world. Is it also the case with some people in your foundation? Do you think that connecting people with Down syndrome from different countries would be beneficial? 

Yes they love meeting other people with DS. The many times we have had meetings especially for the adults with DS, they get excited and interact freely. It would be important for them to be exposed with other people with Down

Does our future generation know about Down syndrome? How do schools try to include people with Down syndrome? 

A higher percentage doesn’t know. Awareness creation is needed even in schools so as to educate many of them. We advise parents to take their children in integrated schools, for the purpose of them not deteriorating more compared to those who attend special schools. Special education here is more for those with physical challenges than those with intellectual. In integrated schools with understanding educators, they tend to perform better. 

A number of schools here have included people with Down syndrome.

What would you say to someone who would like to give more visibility to Down syndrome in Kenya? 

We need more voices and donors to better those living with the condition here in Kenya. We aim at creating awareness, giving quality education, affordable healthcare to all those living with Down syndrome in Kenya. We are open for partnerships.

One last message for us or for our followers? 

Let us be a voice for those living with Down syndrome all over the word. Important resources be made affordable in all the countries. Let us encourage organizations from different countries to work together and make it possible to have exchange programs specifically for those living with Down syndrome. We still have a lot that need to be done.

Read more about Down syndrome in Kenya or write to us: www.dss.or.ke 

Email: nationalcoordinator@dssk.or.ke 

Contact: +254 712321321/ +254 714321321


- May 2020


If you know someone who would like to be interviewed do not hesitate to contact me at: ebradley@d2020worldproject.com