Staff at the South African Federation for Mental Health (SAFMH) used the annual Intellectual Disability Awareness Month commemorations to show society that people with intellectual disabilities can rise above demeaning labels attributed to them with support.
Persons with intellectual disabilities (ID) are recognised as the one group that has consistently been denied dignity and the value attached to the status of being “normal”, emphasising the destructive view that lives of persons with ID are perhaps of less value. This year, SAFMH is using Intellectual Disability Awareness Month (IDAM) in March to draw attention to contributions individuals with ID can make to society, despite the challenges they face on a daily basis. For 2020 the organisation is focusing on the theme “I am able, not a label” to discourage the negative labelling and stigma directed at persons with ID.
To kick off the IDAM celebrations, the SAFMH programmes team visited Little Eden Society and took part in the organisation’s launch of the 3rd annual Little Eden CEO Wheelchair Campaign. The campaign had attracted growing corporate participation since its inception three years ago. SAFMH’s Deputy Director, Leon de Beer, joined Little Eden Society CEO, Xelda Rohrbeck, by spending part of the day in a wheelchair in order to highlight mobility challenges faced by people with severe and profound intellectual disabilities. SA Paralympic boat rower, Sandra Khumalo, who is also a patron of Little Eden and an ambassador for the campaign and herself a wheelchair user, also participated in the launch.
ID generally starts before the age of 18, affecting a person’s development, which continues through the person’s life. According to the Western Cape Forum for Persons with Intellectual Disability, children with ID develop and learn slower than other children their age in two specific areas:
1. Adaptive functioning - the ability to acquire skills and behaviours that help them to navigate the demands of everyday living to the same degree as other children their age.
2. Intellectual functioning - the ability to learn, think, engage in problem-solving, use reasoning and make sense of the world to the same degree as their peers.
While SAFMH recognises that research and information goes a long way in helping to make a case for the importance of eradicating stigma, the organisation also believes in the immense value of listening to the voices of those who are directly affected or are persons with ID themselves. Through the assistance of Cape Mental Health, a constituent body of SAFMH that provides a wide range of services to persons with both psychosocial and intellectual disabilities, SAFMH was able to share some insights from individuals with ID at the beginning of the campaign. Their stories reflected the daily experiences of persons with ID and also highlighted the crucial role played by community-based mental health service providers.
One mental health care user who shared her story was Samantha*, who had a difficult upbringing, with people often calling her derogatory names because she had ID. According to Samantha, such words left her broken inside and hurt her deeply. However, she refused to allow the severe sadness this caused to discourage her from doing things she set her mind on doing.
“I had to tell myself that I could do things and that everyone is special. I started at the Training Workshops Unlimited and worked on contracts. I worked a couple of shops in contract positions afterwards. I also participated in the Hygiene and Cleaning Learnership. I started believing in myself with every opportunity,” said Samantha.
In 2018, Samantha was selected for a German exchange programme when she came across and took interest in the “Easy-to-Read’’ programme. Upon her return, she worked with the Cape Mental Health to develop the “Easy-to-Read” programme which to date has resulted in a 500-word “Easy-to-Read” dictionary.
Another mental health care user who had become accustomed to demeaning labelling while growing up with an ID is Bongani*. Bongani turned 18 years old when he was doing grade 8 and therefore was the oldest person in his class. He was called names because he had a learning disability. “Some people call you by funny names, “mad, crazy, stupid” but they don’t know how these words can hurt you and even if you try to explain to them they will never understand,” he explained.
Bongani now goes around educating the public about ID. “People applaud me, I feel very proud because I have shown them that I am not a label,” he concluded.
Stories such as these show that when offered support and opportunities, persons with ID are able to rise above labels and become productive members of the society.
*Names have been changed to protect the identities of the interviewees.