Welcome back to our explainer blog series where we unpack specific mental health conditions and share stories of those with lived experience. In this edition we are focusing on intellectual disability.
|Globally, persons with Intellectual Disability make up 2% of the population living with disability. In South Africa, approximately 4 out of every 100 people are affected by some level and form of ID.|
Intellectual Disability (ID) is one of the most disregarded disabilities in South Africa. The majority of persons with ID live in low-and middle-income countries, where there is inadequate focus and resourcing aimed at assessing and diagnosing their challenges in terms of meeting the social, cognitive and economic demands of everyday life. But even in high-income countries, services for persons with ID are not necessarily a high priority.
What is ID?
ID generally starts before the age of 18, affects the development of children, and continues throughout the person’s life. ID can occur in one of four levels –
– and each of these levels require unique support needs. Children with ID develop and learn slower than other children their age in two specific domains:
- Adaptive functioning – the ability to acquire skills and behaviours that help them navigate the demands of everyday living to the same degree as other children their age
- Intellectual functioning – the ability to learn, think, engage in problem solving, use reasoning and make sense of the world to the same degree as others their age
What causes ID?
ID is caused by a number of social, behavioural, educational and biomedical risk factors, coupled with factors pertaining to the timing at which the individual is exposed to these risk factors – prenatal, perinatal or postnatal. Conditions that are associated with ID include Down syndrome, foetal alcohol syndrome, fragile X syndrome, birth defects and genetic conditions.
Persons with ID are often categorised into a range of subgroups that themselves change over time. So while not a homogenous group, persons with ID generally share barriers related to thinking, remembering and communicating, and as a result face a wide range of socially-constructed assumptions and biases.
Watch the video below to hear the story of Loretta Claiborne, someone who has spent her whole life defying these assumptions and biases.
Persons with ID are generally one of the most marginalised groups in society, facing high levels of social, financial and health inequities.
Stigma is defined as “an attribute, quality, or condition that severely restricts or diminishes a person’s sense of self, damaging their self-worth, social connections and sense of belonging”. The Lancet Commission’s report on Ending Stigma and Discrimination describes stigma as something that “powerfully and adversely affects individuals, families, communities, and society, is persistent, and exists across cultures”.
While it is true that attitudes towards persons with ID have changed over time, evidence suggests that they remain near the bottom of the social hierarchy, with studies showing that members of the public would rather engage in social interactions with persons with physical or sensory disabilities than with persons with ID.
*Samantha has an intellectual disability and speaks about some of her experiences.
My name is Samantha. Growing up people would tell me that I am stupid and that I would never amount to anything. These words would hurt me deeply and caused me not to have a good self-image. I felt broken inside. I felt like everyone was talking about me and would make fun of the fact that I had an intellectual disability. They would call me names like “dom’, “vertraag” and these words caused severe feeling of sadness.
The Lancet Commission on Ending Stigma and Discrimination also states that “stigmatisation can be seen as a complex multilevel social process that encompasses the elements of labelling, stereotyping, separation, status loss, and discrimination in the context of a power situation”.
*Peter, another mental health care user, described his experiences of stigma and how he tackles it.
Stigma is a very powerful word, and words can hurt deep within our hearts. “Mal, dom, stupid”… These are the things people say to us most days of our lives. I have learnt that those words are meaningless and that you can prove people wrong; you can show the world what you are made of and I believe I have done just that. The road is long and full of crossroads you have to make sure where to turn to.”
Article 26 of the Convention on the Rights of Persons with Disabilities upholds the right of persons with disabilities to attain and maintain “maximum independence full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life’’. However, this is often not the experience of persons with ID, who are more likely to be placed in residential care facilities, often segregated from the community. This is especially true when it comes to persons with profound intellectual and multiple disabilities. Exclusion from community activities can be incredibly isolating and it also strips persons with ID of being a valuable contributing member of their communities, as *Wendy explains below.
My name is Wendy and I am living with an intellectual disability. I grew up in a close knitted community where no-one knew what intellectual disability was. It was really hard. Everyone treated me differently. It was because no one wants to be treated as if something is wrong with them.
I was told to attend a special school where there were other children with the same disability as me. When the people in the community heard I was attending a special school, they started distancing themselves from me.
This made me feel very sad and lonely. I felt like there was something wrong with me. Like no one wanted to be my friend or even talk to me. They called me names like “fat”, “ugly” and “stupid”. This made me feel like crying and locking myself up in a dark room.
Luckily, I am blessed to have a supportive family. They helped me overcome those feelings of loneliness and sadness.”
While stigma is incredibly harmful, it does not have to be inevitable.
Intellectual Disability Awareness Month
As ID remains one of the most disregarded disabilities, there is a National Intellectual Disability Awareness Month (IDAM). Commemorated in March each year, IDAM is a chance to advocate for the human rights of persons with ID to be upheld. It is also a chance to eradicate the stigma that still abounds when it comes to ID and it is a chance to share the stories of persons with ID.
If you missed it, here is a link to our photo series from last year featuring residents from LITTLE EDEN Society and The Hamlet.
This year, we are focusing on destigmatising intellectual disability through shifting attitudes and we ask that you reflect on their attitude towards ID as this can go a long way in supporting more community inclusions for persons with ID.
* Please note that all names have been changed in the interest of confidentiality.
Most of our 17 Mental Health Societies work and provide support for persons with ID, if you are interested in connecting with the organisation in your province, feel free to reach out to us via our enquiries Help Desk. For those who are looking for more guidance, you can head to our website and check out our Information Library.