Intellectual Disability Awareness Month 2024

INTELLECTUAL DISABILITY AWARENESS MONTH

IDAM 2024 I AM NOT MY DISABILITY, SEE MY ABILITY! CONCEPT DOCUMENT

INTELLECTUAL DISABILITY AWARENESS MONTH Intellectual Disability Awareness Month (IDAM) is celebrated annually in March. For 2024, the SA Federation for Mental Health (SAFMH) will be focusing on the theme “I am not my disability – see my ability!” with the aim of sharing the capabilities and potential of persons with intellectual disability [ID] through their creativity and skills to fight against stigma.

We believe by showcasing and sharing these stories, we can shift persistent negative attitudes to ID and foster more inclusion for persons with ID into society.

All the stories shared below come from communitybased mental health organisations, including our Mental Health Societies.

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INTELLECTUAL DISABILITY: A BRIEF OVERVIEW Intellectual Disability(ID) is a term used when “there are limits to a person’s ability to learn at an expected level and function in daily life” (CDC, 2022). ID generally starts before the age of 18 in most people, affects the development of children, and continues throughout the person’s life. ID can occur in one of four levels – 1) mild, 2) moderate, 3) severe to 4) profound – and each of these levels require unique support needs (Western Cape Forum for Persons with Intellectual Disability, 2020).

Children with ID develop and learn slower than other children their age in two specific domains (Western Cape Forum for Persons with Intellectual Disability, 2020): 1. 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 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 others their age.

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INTELLECTUAL DISABILITY: A BRIEF OVERVIEW Globally, persons with ID make up 2% of the population living with disability (Belton et al, 2016). In South Africa, approximately four out of every 100 people are affected by some level and form of ID (Western Cape Forum for Persons with Intellectual Disability, 2020) and yet they are still far too often marginalised when it comes to education, employment and everyday community life.

The World Health Organisation (WHO) states that “disability inclusion is critical to achieving the Sustainable Development Goals and global health priorities to achieve health for all (WHO, 2023). This includes ID and yet, it remains one of the most disregarded disabilities in South Africa (Western Cape Forum for Persons with Intellectual Disability, 2020).

The majority of persons with ID live in low-and middle-income countries, where there is insufficient focus and resourcing aimed at assessing and diagnosing their challenges in terms of meeting the social, cognitive and economic demands of everyday life (Belton et al, 2016). But even in high-income countries, services for persons with ID are not necessarily a high priority (Skuse, 2011). Persons with ID are generally one of the most marginalised groups in society, facing high levels of social, financial and health inequities (Belton et al, 2016).

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STIGMA AND NEGATIVE ATTITUDES ID often elicits negative reactions such as anxiety, pity, avoidance or even antagonism or disgust, which arise because of stigma (Scior & Werner, 2016).

We know the harm that stigma causes (Thornicroft et al.

2022) but we also know that sharing and amplifying the voices, perspective and stories of persons with ID is an effective way to create a shared understanding between people with ID and those without (Swipe Out Hunger, 2020).

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“My diagnosis does not mean I am incapable of learning a new skill and mastering it.

It’s time to be recognised for what I can do not what I am diagnosed with.”

FROM INDLELA MENTAL HEALTH

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I AM NOT MY DISABILITY, SEE MY ABILITY Persons with ID are often not included in community activities, and whilst this can be incredibly isolating, it also strips them of being valuable contributing members of their communities (WHO 2011).

This exclusion is closely linked to the myth that persons with ID are not capable of participating in daily life and activities; however we know that this is not the case. This year, SAFMH decided that instead of simply telling the public that persons with ID should be included in all aspects of community, we are going to show them.

In the following sections, you will read the incredible skills and talents of persons with ID from our Mental Health Societies and other partner organisations. We hope these stories will inspire readers to consider their attitudes towards ID and broaden their understanding thereof. Persons with ID are no different than persons without ID. They have talents and skills and hopes and dreams for their futures, just like everyone else.

This year’s IDAM campaign is all about persons with ID shouting: “I am not my disability, see my disability!”

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I AM NOT MY DISABILITY, SEE MY ABILITY!

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From Pietermaritzburg Mental Health:

#Seeourabilities

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From Cape Mental Health:

Her life started to turn around because she continued with her two passions: making clothing and dancing.

– Zintle’s story:

There is talent in abundance at Cape Mental Health’s Training Workshops Unlimited (TWU) in Athlone. Zintle Sophangisa (27) from Cross Roads in Cape Town is a gifted dancer and designer who has performed with celebrities such as Lady Zamar at the Cape Town Festival in 2022. Zintle, a trainee at TWU in Athlone, was very eager and excited to share her journey as a dancer and a designer with sewing talents. She wanted to tell everyone that persons with ID are capable of doing so many things with their hands. Her mother, Monica, noticed her daughter’s talent for dancing and designing clothes from an early age. When she was little, Zintle would use any old clothes in the house and make dresses for her play dolls.

She also started dancing at the age of 13 and was soon identified as an excellent dancer.

Zintle could not wait to get home from school so that she could run off to her dance classes, despite her mother being very strict. It was at this time, however, that Zintle started experiencing challenges at school. As a child she struggled to read and write and was soon diagnosed with ID. Zintle says she was too shy to share her disability with her family, friends and community because people stigmatise persons with a disability.

“They say they are lazy to learn,” she says. Zintle was forced to leave school and struggled with her mental health because she felt alone and isolated because of having a disability. She was also diagnosed with depression but received treatment for it.

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Her life started to turn around because she continued with her two passions: making clothing and dancing.

– Zintle’s story:

Her life started to turn around because she continued with her two passions: making clothing and dancing. Despite the stigma in her community, she enrolled in a local sewing course. She completed the course and learnt how to create panel skirts, boy’s pants, basic shirts, unlined ladies' jackets, aprons and pattern making. Zintle found it difficult to use a measuring tape for the calculations needed to cut material for garments and specific patterns. However, she is extremely grateful for the very patient instructor who assisted and guided her. Many of the other participants gave up and walked out of class, but Zintle knew this was what she wanted to achieve, regardless of her challenges.

She says that her best moments were receiving her certificate for the completion of her sewing course, and when she was selected to dance with other well-known international dancers at the Lady Zamar concert at the Green Point Stadium. “I felt like a superstar,” says Zintle. Everything changed for Zintle when she joined TWU in September 2023 because she was surrounded by adults who understood what she faced on a daily basis. Her family has also accepted her disability and has become supportive of her dreams and goals. Being at TWU has helped her become comfortable with her disability and to speak up for other people who need encouragement and motivation.

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Her life started to turn around because she continued with her two passions: making clothing and dancing.

– Zintle’s story:

She also says that she would like to speak to people with disabilities to let them know that they are capable of doing more.

Zintle feels that learning is a daily achievement and that her dream and goal is to teach others with disabilities how to sew and dance.

“Our parents are not always going to be with us. People living with intellectual disability should not be shy to show the world their talents.”

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A LONG RUN TO FREEDOM ELRIDGE’S STORY:

Elridge Kalanie (42) is a running enthusiast with ID who runs every weekend from his home in Lavender Hill to St James, as a way of enjoying himself and staying fit. Elridge, who is a trainee at the Training Workshop Unlimited (TWU) in Retreat, joined the Capricorn Athletics Club in Muizenberg in March 2022, and has started running marathons with the team.

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A LONG RUN TO FREEDOM ELRIDGE’S STORY:

Elridge, who trains by himself and with the team, says he receives a lot of encouragement from his mom to excel in his sport. Every Sunday morning he runs from his home and meets up with the club in Muizenberg to run the rest of the route to St James and back home again. The total distance is 14.4km.

His disability has not impacted on his running at all, to the degree that the coach of the Capricorn Athletics Club has sponsored his running gear. He said it was very special for him to take part in the Nelson Mandela 27 for Freedom Run in Langa last year.

The sporting event pays tribute to the late former president Nelson Mandela’s quest for dignity and justice for all, by giving runners the chance to re-enact his final walk to freedom. Elridge says he would like to continue running for as long as he can. His dream is to eventually train children and adults with ID, and to one day open his own running club.

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A gospel singer with ID at Nonceba Workshop would like to encourage everyone with a talent to stand up and be proud of themselves, regardless of their disabilities. Yolander Poswa (24) is a young woman with a beautiful voice who dreams of becoming a famous singer. Yolanda is a work skills trainee at Training Workshop Unlimited (TWU) who is also remembered as the vocalist at Cape Mental Health’s Customer Appreciation Day in 2019.

Gospel singer will never give up - Yolander’s story:

Yolander, who lives with her mom in Site B Khayelitsha, sings every chance she gets, whether alone or in a group. When she was a teenager she sang as the lead in Sunday school, and then progressed to being the lead singer at her church. The highlight of her singing career was when she joined the local choir and was asked to sing at a large event in Khayelitsha in 2019, which local government also attended.

Unfortunately, during the COVID-19 pandemic, the choir could no longer go out and perform for community projects and events. Yolander says it affected her a lot when the choir drifted apart and the members started joining other community projects. She says she would love to be a part of a local choir again and to sing with local famous artists.

Yolanda’s words of encouragement to adults living with a disability are: “If you have a talent, gift or skill, don’t hold back or be shy to showcase your talent. Be proud of yourself even though you might face challenges.

Don’t ever give up,” she says.

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A SHY SEAMSTRESS BLOSSOMS AT TWU - SHARON’S STORY Sharon Cotie (40) is a talented seamstress with ID at Training Workshop’s Unlimited (TWU) in Mitchells Plain, who can sew a garment from start to finish, using a pattern. She has often assisted the sewing instructor in fulfilling numerous contracts for TWU clients and is a great asset to the organisation.

Her mother, Miranda Cotie, noticed her daughter’s talent early on because even as a child, Sharon was always looking for garments at home to fix and sew. Sharon started sewing more earnestly in her school-going years and was selected to be part of a sewing learnership in the early 2000s, where she learnt very valuable sewing skills. Since then she has created various items such as curtains, pillowcases, tablecloths, peg bags and scatter cushions, to name but a few.

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A SHY SEAMSTRESS BLOSSOMS AT TWU - SHARON’S STORY Chantal Stemmet, the job coach at Mitchells Plain TWU, describes Sharon as a shy and introverted person who only recently became more involved in activities at the workshop that involved group or teamwork. Sharon is now more confident to show off her talents when assisting the sewing instructor with the TWU contracts.

Sharon’s proudest moment was when she created a dress on her own to perfection. She cut the dress from a pattern, and she sewed it on her own. Sharon says that she would like to learn the more modernised fashion patterns as she has always had a passion for sewing and would like to start her own clothing line.

Sharon encourages other people with ID not to be shy, and to use their abilities as they never know where it could lead them in the future.

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From LITTLE EDEN Society:

Music is the universal language of the soul – Charmaine Berkhouts, Music Coordinator at LITTLE EDEN Society :

“I am the music co-ordinator at LITTLE EDEN Society and since starting music classes, we have seen huge changes in the residents of the Elvira Rota Village. We have seen how the residents are truly blossoming, and talents that have been dormant, have emerged in so many of them. Each group has one lesson a week, and in these sessions we have implemented dancing, singing, and instruments. It’s just so good to see the residents faces light up as they come into the hall, knowing that for the next half an hour to 45 minutes they are going to enjoy themselves, doing something that they love. Because of this, I have been able to identify those who stand out in the group sessions and this has led to individual lessons, or smaller groups.

In these sessions, I am helping them to develop their talents. This has enabled me to start the first ever Little EDEN choir, showcasing the vocal skills of some of our residents.

We have had the privilege of singing outside of the home, and this has brought so much joy to our audiences, as well as to the residents. Our Christmas show was called ‘Little Eden has got Talent’, and here we saw our audience becoming very emotional, as they witnessed our amazing family, doing what they love. I would like to give you some examples of residents who have progressed in leaps and bounds, as they come for their weekly music lessons, and individual sessions:

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Matthew has emerged as our own Kenny Rodgers. He brings his guitar to every lesson, dressed like a cowboy, and once the sound system has been turned on, he sings and plays his hero’s songs.

Kolofelo is one of the newer residents, and we have been blown away by his skills on the drums. If you had to close your eyes, you would think it was a professional drummer playing. His sense of rhythm is outstanding.

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LITTLE EDEN Society band in action

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Naledi, who never opened his mouth in music class, has now progressed to singing, despite the fact that he is not able to vocalise words as such. Just the fact that some kind of a melody is coming out of his mouth has been a huge step forward.

Out of all the residents, the one who has shown us the most talent is Pinky. Her voice is absolutely beautiful, and as such she is the lead singer in the choir.

Nomfundo is not able to communicate at all, but as soon as she comes in for her lesson, and I start playing the piano or a CD, she starts singing, keeping the melody perfectly, as well as singing the words.

Siza is another young lady who has shown us that despite the challenges that she faces, she is able to sing. She sings with such joy and enthusiasm, lighting up the room with her smile and her voice.

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These are just a few examples of our beautiful residents and their musical skills. Through music, persons with ID can learn things such as counting their ten fingers on their hands, counting up to ten, the days of the week, and their ABC’s. In my experience, many people assume that people living with ID can’t learn, but music is the universal language of the soul.

I have seen people brought to tears when they witness our residents singing as a choir. It is truly uplifting.

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From Indlela Mental Health:

“Hello, my name is Asanda, and I am a 16-year-old girl with ID. I enjoy being seen and heard. My Imbewu classmates call me “Spotlight” and others refer to me as “Fashion Killer” – because I enjoy customising my clothes. I was so excited to hear the word modelling when our facilitator told us that she had met Sis’Bella from the Motherwell Modelling Foundation.

A model is born Asanda’s story:

I could already see myself on stage and people clapping hands for me.

We met the modelling coach Sis’Nandie, who introduced us to the world of modelling and gave us some training – she was very patient and sweet. Wednesdays have become my favourite day of the week since it is modelling day with Coach Nandie and I have to wear heels to the centre.

Ten of us from the Imbewu class were chosen to participate at the “Battle of Fashion Show”, which was held on October 15 2023, at the Mendi Art Centre in New Brighton. On the day of the show, I was both excited and nervous because there were learners from all different schools in Gqeberha participating. The hall was packed to full capacity with members of the community, friends, family, teachers, and judges. There was loud music and cameras clicking all over the venue; people had dressed up, were wearing glamorous make-up and everyone looked so good.

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“This was the best day of my life!”

A model is born Asanda’s story:

We had to walk down the stage four times in various styles/outfits.

I was nervous, uneasy, and excited at the same time, especially for the first round. I can’t really put it into words, but I was happy, excited, and ready to hear and see the crowd screaming and clapping for me and my classmates. I made certain that my clothing ranged from old to classic. I was prepared to show everyone that this was my moment to shine, show-off, be accepted, seen and heard.

This was the best day of my life!

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OUR CALL TO ACTION SAFMH believes that persons with ID deserve the same access and opportunities to education, skills development and creativity as all South Africans. However, we know that stigma and negative attitudes continue to exclude persons with ID from most areas of society. This IDAM, we call on everyone to meaningfully engage with the stories featured in this concept note and to challenge their own attitudes to ID. We call on Government to ensure they adhere to the National Mental Health Policy Framework 2023-2030 where they state that there will be an intersectoral approach when it comes to the inclusion of persons with ID in general community life, such as access to: education and skills development; income generation opportunities for users, and reasonable accommodation provisions in the workplace (NMHPF, 2023) We also call on all organisations working with persons with ID to share stories, photos and examples of creative works and activities of persons with ID they work with so that we can include them in our campaign throughout March.

The information shared in this concept note can also be adopted by stakeholders as part of press statements, infographics, and awareness and/or programmatic interventions that are devised as part of their contributions towards the March 2024 IDAM campaign.

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OUR CALL TO ACTION As SAFMH, we want to contribute to the skills building of persons with ID. As such we are also going to be holding an in-person art workshop with community-based organisations who work with persons with ID. This will give us an opportunity to hear more about persons with ID and their abilities in their own words.

We urge NGOs, community organisations, families, advocates, self-advocates and other partners to utilise this concept document in their community-based outreach, awareness and programme activities and to advocate for the end to stigma and a positive shift in attitudes towards ID. We also call on those working with persons with ID and their families to help us amplify these messages by calling on local radio stations to do interviews with persons with ID, their families and service providers to share stories about the importance of ending stigma in the community, educational and employment settings, as well as calling on everyone in South Africa to join hands with us to shift local attitudes to promote changes to people’s attitudes all over South Africa.

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REFERENCES Belton, C., Groce, N., Hamid, A., Hastings, R., Kett, M., Laniyan, A., Patel, M., Scior, K., & Werner, S. (2016). Consigned to the margins: A call for global action to challenge intellectual disability stigma. The Lancet Global Health, 4(5), e294e295. https://doi.org/10.1016/S2214-109X(16)00060-7 Bonaccio, S., Connelly, C., Gellatly, I., Jetha, A. and Martin Ginis, K., (2019).

The Participation of People with Disabilities in the Workplace Across the Employment Cycle: Employer Concerns and Research Evidence. Journal of Business and Psychology, 35(2), pp.135-158.

Centers for Disease Control and Prevention (2022). Facts about intellectual disability. Available at: https://www.cdc.gov/ncbddd/developmentaldisabilities/facts-about-intellectualdisability.html (Accessed: 25 January 2024).

National Mental Health Policy Framework and Strategic Plan 2023 – 2030.

(2023) Scior, K. (2011) “Public awareness, attitudes and beliefs regarding intellectual disability: A systematic review,” Research in Developmental Disabilities, 32(6), pp. 2164–2182. Available at: https://doi.org/10.1016/j.ridd.2011.07.005.

Scior, K., & Werner, S. (Eds) (2016). Intellectual disability and stigma. Stepping out from the margins. London, United Kingdom: Palgrave MacMillan.

Skuse, D. (2011). Empowering people with intellectual disability. International Psychiatry, 8(2), 28-29. doi:10.1192/S1749367600002381 Swipe Out Hunger, 2020. Storytelling For Advocacy, [ebook]. Available at: <https://www.swipehunger.org/wp-content/uploads/2020/09/Storytelling-ForAdvocacy.pdf> Thornicroft, G. et al. (2022) “The Lancet Commission on ending stigma and discrimination in Mental Health,” The Lancet, 400(10361), pp. 1438–1480.

Available at: https://doi.org/10.1016/s0140-6736(22)01470-2.

Western Cape Forum for Persons with Intellectual Disability (2021). Frequently asked questions. Accessed at https://wcfid.co.za/frequently-asked/ WHO (2011). World Report on Disability. Malta: World Health Organization & The World Bank.

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INTELLECTUAL DISABILITY AWARENESS MONTH

IDAM 2024 I AM NOT MY DISABILITY, SEE MY ABILITY! CONCEPT DOCUMENT