Intellectual disability affects the way an individual learns, communicates, and undertakes everyday activities. It is a developmental disability, which is present at birth or may develop during childhood. Persons with intellectual disabilities often need help with everyday activities. However, with the right support, they can live full and active lives. In the absence of such support, however, persons with intellectual disabilities are likely to face particular barriers.All rights matter for me to live and be included in the community. Recognizing the voices of persons with intellectual disabilities and their families. Click To Tweet
Raising Children with Intellectual Disabilities
Throughout raising their children with intellectual disabilities, families are left with the difficulties of care especially in developing countries where families receive very minimal or no support at all.
Families have not seen much attention from the services provided that are geared towards the nurturing of skills, deep understanding and information on their children’s disability, how to increase their children’s capacity to live in this life and fend for themselves, understanding of the devastating mental health toll that care has on them.
Instead, they have been shunned, discriminated against, had family members turn against them and leave, had to deal with depression while trying to understand what is happening to their children with intellectual and developmental disabilities.
They have been forever scarred by the term ‘mentally retarded’ by professionals who offered little else than explaining that their children are not ‘normal’ and they would have to take them to special schools plus lifelong care.
The trauma parents go through in the first stages of diagnosis and understanding the disability of their children is beyond horrifying.
United Nations on Intellectual Disabilities (UNCRPD)
In the preamble of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) which most African countries have ratified, Clearly says that State Parties to the present convention shall; (c) Reaffirm the universality, indivisibility, interdependence, and Inter-relatedness of all human rights and fundamental freedoms and the need for persons with disabilities to be guaranteed their full enjoyment without discrimination
(e) Recognizing that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others, and Emphasizing the importance of mainstreaming disability issues as an integral part of relevant strategies of sustainable development.
Integral Rights of Persons with Disabilities
The CRPD also came to shed light to new concepts in giving accommodations to persons with disabilities naming this an integral right which if denied could mean discrimination on the basis of disability. These new concepts are;
- Discrimination on the basis of disability,
- Reasonable accommodation and,
- Universal design.
Bridging the information gap between persons with disabilities, their families, communities, the world and its States. Making sure we all know what the best way is to ensure we are being inclusive of all people as we run the world.
Persons with Intellectual disability being one of the most marginalized groups in the society, have seen slow change and progress all over Africa when it comes to the right to independent living and being included in the community.
Barriers Hindering Independence
Many barriers hinder their growth into independent adults even if that does not mean moving out of the home.
Barriers mainly come in with the age-old misconception that persons with intellectual disabilities are seen as children who require life-long care, people who are a burden to society, and are only there to be seen and helped.
This misconception is widely seen when we scrutinize the education system whereby persons with intellectual disabilities are excluded and discriminated against right from early development years, there are no opportunities available to adults with intellectual disabilities in secondary and higher education in Africa and the world.Many barriers hinder the growth of Persons with Disabilities into independent adults even if that does not mean moving out of the home. Click To Tweet
Education Transition Rates
The transition rates from primary, secondary, and higher education for persons with intellectual disabilities in Africa and the world is wanting.
For example, the Kenya Association of the Intellectually Handicapped has approximately 4000 members which translate to households where we have persons with intellectual disabilities and their families.
Among the 4000 members, we can only count 2 persons with intellectual disabilities with secondary school certificate, 4 with primary school certificate while the higher majority of the persons with intellectual disabilities have been in special schools for 20 plus years and another a huge percentage have also not stepped their foot in any school of any sorts.
Depending on where they are geographically and who they are with.For example, the Kenya Association of the Intellectually Handicapped has approximately 4000 members which translate to households where we have persons with intellectual disabilities and their families. Click To Tweet
The big question is if one is not included in education in their community do they belong, or are they really included in their communities? and how does this translate then to inclusive employment, independent living, home and family, and the right to political participation?
This goes to show that since time immemorial a child born with an intellectual disability has remained a child in the minds of some family members, friends, states, and society as a whole. This perception has worked against persons with intellectual disabilities for years who have to fight harder to attain their rights and live in a society on an equal basis with others.
Kenya Association of the Intellectually Handicapped
Joy a young woman with an intellectual disability from Nairobi a member of Kenya Association of the Intellectually Handicapped says:
I was never told I have an intellectual disability, I only noticed I was different when I was taken from the school I was in and to a special school, I have spent my life being bullied and made to feel different for having an intellectual disability.
Because there is no information for families on how to include us, we face limitations from our families too, I have a very protective family, making decisions becomes hard and frustrating.
UN CRPD: Article 29 – Participation in political and public life
Kenya Association of the Intellectually Handicapped
Kenya Association of the Intellectually Handicapped – Right to Action with Passion.
Studies suggest that 49 percent of people with intellectual disabilities will experience 10 or more sexually abusive incidents, yet they face huge barriers when it comes to access to justice.
These barriers related to communications when testifying in court and an unfriendly criminal justice system that does not take into account their special needs.
However, this situation is slowly changing in Kenya, thanks to efforts by the Kenya Association of the Intellectually Handicapped (KAIH) that is now changing the landscape on access to justice for persons with intellectual disabilities.
KAIH is now providing communications support to ensure that persons with intellectual disabilities communicate effectively in court, supporting in the preservation of evidence to ensure admissibility in court, supporting investigators in gathering evidence and prosecutors to understand the cases.
In addition, KAIH is working with the judges and magistrates to provide a friendly environment that enables persons with intellectual disabilities to freely participate in court sessions.
These interventions have yielded little victories that are now changing the landscape on access to justice for persons with intellectual disabilities. Following interventions by KAIH, a young woman with intellectual disabilities in Mombasa accessed justice following rape by an uncle.
The uncle was found guilty of the offense and sentenced to 30 years in prison. This is a landmark ruling that has set precedent for such cases and has led to the prosecutors and investigators requesting support from KAIH anytime they are dealing with cases involving persons with intellectual disabilities.
“30 years in prison was a big win for us. We now receive a lot of request for support from the justice system on cases involving persons with intellectual disabilities,” an elated Fatma Wangare Haji, Executive Director, KAIH revealed
Kenya Association of the Intellectually Handicapped (KAIH) is a membership-based organization focusing on programs and initiatives that recognize the rights, meaningful participation, and full inclusion of Persons with Intellectual Disability (PWIDs) and their families in all aspects of life.
For 20 years KAIH has been committed to promoting these rights and our organization now represents over 3,000 members in 10 counties and trained at least 9,700 persons who are the families, the representatives from the judiciary, executive, legislative assembly, various ministries in the government and civil societies.
Further Reading Related to Intellectual Disabilities
- What are examples of intellectual disabilities?
- How best do we ensure the full participation of people with disabilities in all aspects of life in Africa?
- What are the 4 levels of intellectual disability?
- Disability: How can society change the way they see people with disabilities?
- ALBINISM: Should Albinism really be considered as a disability?
- Is ADHD an intellectual disability?
- How serious is Autism being taken in East Africa?
- What is considered an intellectual disability?