Intellectual Disability Uganda

Intellectual disability (ID), also known as mental retardation is a general disorder of development of the brain, it manifests in diminished intellectual and adaptive functioning. It is defined as an intelligence quotient (IQ) of less than 70 and additionally deficits in 2 or more adaptive behaviors for daily living. ID was once focused on intellectual ability, it now focuses on ability to interact in daily life. This means that a person with a low IQ may not be considered intellectually disabled. Wikipedia continues with the following insight:

The terms used for this condition are subject to a process called the euphemism treadmill. This means that whatever term is chosen for this condition, it eventually becomes perceived as an insult. The terms mental retardation and mentally retarded were invented in the middle of the 20th century to replace the previous set of terms, which were deemed to have become offensive. By the end of the 20th century, these terms themselves have come to be widely seen as disparaging, politically incorrect, and in need of replacement. The term intellectual disability is now preferred by most advocates and researchers in most English-speaking countries. As of 2015, the term "mental retardation" is still used by the World Health Organization in the ICD-10 codes, which have a section titled "Mental Retardation" (codes F70–F79). In the next revision, the ICD-11 is expected to replace the term mental retardation with either intellectual disability or intellectual developmental disorder, which the DSM-5 already uses. Because of its specificity and lack of confusion with other conditions, the term "mental retardation" is still sometimes used in professional medical settings around the world, such as formal scientific research and health insurance paperwork.

ID affects 2–3% of the world population, 75-90% of those affected people have mild ID.

We do not need sympathy.
All we need is opportunity.

People with IDs face many problems. The shortage of accurate data about numbers is unsurprising. In the 2009 paper Perspectives of intellectual disability in Africa: epidemiology and policy services for children and adults the author seeks to establish the reasons for this lack of information. The following points are summarized:

• There is a paucity of data about ID in African countries because of the shortage of trained psychiatrists, often less than 1 per 1,000,000. 
• Negative attitude to people with ID is pervasive
• IDs cause a heavy financial burden taking up 10% of the mental health beds in hospitals in Nigeria.
• HIV/AIDS complicates matters because many children with ID are orphans
• Persons with IDs face prejudice and stigma from medical staff
• The legal system is ill equipped to cope with individuals with IDs

The conclusions of the 2013 paper, Intellectual disability in Africa: implications for research and service development, are equally stark:

Although intellectual disability (ID) is probably the largest impairment grouping on the African continent, few indigenous research and evaluation studies have been undertaken.

The paper  continues:

People with ID are amongst the most marginalised groups globally. They experience social exclusion on a much greater scale than their able-bodied counterparts and this experience is intensified within contexts of poverty such as those on the African continent. Furthermore, even where services are available for persons with other impairments, ID is often neglected, in part due to a dearth of advocacy by and for them.

The paper ends summarizing the challenges that face people with IDs in the future:

The twenty-first century has seen world-wide economic, political and social changes. As respect for human rights grows within continental Africa, the economic growth of nations expand and their political systems become more democratic, then the future of disabled people should become more hopeful especially as the UN Convention of Rights of Persons with Disabilities has been ratified by many African states. However, determined efforts are needed to ensure that these citizens do indeed benefit but for this to happen the foundations for sustainable development need to be laid now. The identification of priority issues and the gathering of indigenous, evidence-based information are critical foundational steps.

Inclusion is a right not a special privaledge for a selected few

ID affects the whole family. What is it like to be the sister of someone with ID? This is the story of Rhona, written by her sister (Home Health The pain of raising a mentally retarded child):

Whatever happened to you, Rhona. Where did your words go? Why won’t you just be normal, like any other child? You see, sometimes I want to slap you. But then again I can’t. In your small world, perhaps, undressing and walking about naked is totally logical.
In your mind, maybe, you never understand that you should wear sanitary towels during your menstruation period. And yes, to you, it is just reasonable that the best defence you can put up is fighting when we try to force you to wear pads.
after all, you have this of incredible energy in your arms; I would never know how you got it.
These are only a few of the questions that run through my mind looking at my 20-year-old mentally retarded sister.
I feel an overwhelming sense of despair. You never know what else to do when you wake up and she has soiled her beddings. You just never know what to make of her, when you wake and she has thrown all the day’s meals in a trash can. You can never know what to do when she refuses to eat food for two days in a row; or when she refuses to wear sanitary towels and stains everything with blood.
Growing up, I never really understood why she was not talking or walking. While the rest of us played out and about, Rhona was always there — stuck in one place.
Perhaps it was that swelling that she was born with on the “soft part” of her head. At just about three months, she underwent an operation to have the swelling removed and it was successful.
She started walking at about six years of age. Talking was often with much difficulty so much that sometimes she had to bang her fist hard on the table for some words to come out. But at least she always managed to say something.
As she grew older, she seemed keen to go with us to school. But after a week of ridicule from her Primary One peers, she could not go on. In fact, we too were ridiculed as “siblings of the musilu”. Because she was slow in everything, other children laughed at her.
If she wet her underwear in class, word would spread from the pre-primary section to the P7 class.
Needless to say it was disheartening when everyone gathered to look at my “musilu” sister. I could have told them to mind their business or maybe explained that it was a condition that could happen to anyone. But as a 10-year-old, I often burst into tears. I could never understand why my sister was the way she was. Why, if the operation was successful, was she not growing normally?
I started dreading school because I never knew what to tell anyone who asked about Rhona. At lunch time, everyone gathered to look at how she fed like a baby; as she often smeared food all over her mouth. School just sucked.
My parents were later to overprotect Rhona. Dad tried to homeschool her. She had keen interest in crocheting and my mother was somewhat confident that since Rhona could not go to school, she would perhaps make a living out of crocheting.
Afraid of the bullying from the rest of the world, my parents jealously guarded Rhona so much that after their demise, we didn’t know where to exactly start. I don’t know if she is mourning or grieving in her own way, but Rhona has since deteriorated. The few words she used to say are no more. Her mannerisms have changed from the once calm girl to rough. She cannot bathe herself. She cannot take herself to the loo and she won’t feed herself. If it rains and we are not anywhere near to take her inside the house, be sure she will get drenched.
She unconsciously shakes her head all the time, laughs to herself all the time, as saliva sometimes flows freely. At some point you are afraid, her neck could break as a result of shaking it. She keeps scratching her face so much that it has now darkened yet she is light skinned.
She laughs to herself without reason. Some mornings when you think she has woken up in high spirits, she won’t accept to wear anything. If she does, she will remove it in a couple of minutes and soak it right away; or at least soak all her dresses and stay naked with all her breasts out.
You want to bury your head in the sand if you have visitors and she shows up in the sitting room naked. Sometimes she gets up and throws out everything you have in the house; from the utensils to food.
On the day when she appears “normal” she will wake up and bathe every 15 minutes. Should you stop her, she will hit you with all her might.
We will never know if she has a fever. We have to keep a doctor on standby to keep monitoring her. But she will never say anything. The words totally disappeared. Where they went, I will never know. Whether the doctors touched an important part of her brain during that operation they carried out on her head, I will never know. The stark reality is accepting and parenting you the way you are, Rhona Owomugisha. 

In summary, due to heavy stigmatization and prejudice, not only in Uganda but on the whole of the African continent, knowledge about persons with IDs is scarce. Little is known about the numbers of people affected by ID in Uganda. There is a great lack of understanding about the needs and rights of persons with IDs. There is a need for the education of the general population and greater awareness of the issues that affect people with IDs and their families.

For more information about IDs contact Uganda Parents of Persons with Intellectual Disabilities (UPPID) and also INCLUSION UGANDA (Nee: Uganda Association for the Mentally Handicapped (UAMH/IU).