People with intellectual disabilities are quite capable of living lives that are meaningful and happy but this only takes place through implementation, education and activism, writes Nicole Breen.
The World Health Organisation (WHO) defines mental health as "…a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community…"
This describes people who are happy and inspiring.
We at the South African Federation for Mental Health (SAFMH) advocate for the idea that all people – regardless of any mental illness or disability they may have – deserve no less than the "state of well-being" contemplated by the WHO, and that anyone can attain this state with the proper interventions and support, and if they are treated with dignity and respect.
On 20 February 2019, the staff of SAFMH visited the Hamlet Foundation (Place of Hope) to engage in an exercise with their beneficiaries, who are individuals with varying degrees of intellectual disability. The interaction was done in view of March 2019 being Intellectual Disability Awareness Month. The session we ran with the beneficiaries provided them with an opportunity to express what made them feel respected and for us to learn from them.
We were struck by the warm greetings we received and the infectious enthusiasm of the beneficiaries who happily shared their views and experiences. These, we instantly knew, were people who were in a good state of mental health – happy, content and passionate about their endeavours at Hamlet. While they acknowledged their disabilities, they were not in the least caught up by them and focused instead on what their talents, passions and ambitions were, clearly indicating what gave them a sense of dignity and pride.
Segri Subrumuny, Hamlet's CEO, told us that the purpose of the organisation was to uplift and develop people with an intellectual disability as individuals, as people who "have the same needs as everyone else."
"They want people to listen to them, to communicate with them with respect and refrain from teasing or making fun of them…as well as the opportunity to earn an income," she said.
Contrary to popular stereotypes, people with intellectual disabilities "are not violent, mad, stupid, unfeeling or uncaring people," illustrated Subrumuny.
This was borne out by our experience of the Hamlet residents' genuine excitement to meet and interact with us, and with the vigour with which they took part in the activities we ran with them– this was inspiring even for those of us who had worked with such individuals in the past.
While the Hamlet beneficiaries have considerable amenities and opportunities available to them to learn, work and socialise, many people with intellectual disabilities are not as fortunate.
With a lack of prioritisation of mental health in general as well as poor service delivery, lack of support at community level, lack of opportunities for skills development, the stigma in society as well as service providers and the remnants of the medical model of disability which can lead to life-long institutionalisation, many people so situated are left to languish.
Many are doomed to fall into the poverty trap and to experience social exclusion, often with little to no chance of escape. While much has been done to ameliorate the plight of such individuals by the state and non-governmental organisations – including the promulgation of law and policy such as the Mental Health Policy Framework and Strategic Action Plan 2013-2020 and, for instance, the campaigns of SAFMH and other organisations – many people with intellectual disabilities remain underserved, caught in a seemingly endless labyrinth in which they face dead end after dead end.
Mental health considered a luxury
So what can be done? The difficulty with this question is that the idea of good mental health is considered a luxury – particularly for the indigent or those who struggle to advocate for themselves, which is often the reality for people with intellectual disabilities.
The budgetary allocations for mental health in various governmental departments are in general miniscule and the state seems to operate on the basis of putting out fires and reacting in ways that, as in the Life Esidimeni tragedy, only exacerbate matters, instead of taking proactive steps to improve the mental health of the people of the country.
Mental health has long been referred to as the "Cinderella" of South Africa's health crises – an issue that is neglected and largely ignored. But it's not all doom and gloom. The fairy tale had a happy ending after all, and Cinderella was spared her fate of wanton neglect.
It is the hope of SAFMH that this will be the case for mental health in general. People, especially society's most vulnerable – such as people with intellectual disabilities – deserve an opportunity to live to their fullest potential.
If we want to uplift people with intellectual disabilities we have to take a multi-pronged approach. SAFMH believes that there are certain salient factors that must be present in order to accomplish this feat. The primary duty-bearer in this scenario is the state. Government must create a climate conducive to the protection and empowerment of these individuals. This does not only denote the creation of structures such as a legal framework but requires concrete implementation of law and policy.
While the former is largely in place, the latter is pitifully lacking. Comprehensive documents such as Education White Paper 6: Special Needs Education, Building an Inclusive Education System (2001) often merely gather dust, rendering them moot and meaningless.
If we are to attain a true state of constitutional democracy, a paper exercise alone simply will not do. The prescripts of the Constitution, as well as enabling legislation, take cognisance of both the vulnerability of people such as those with intellectual disability as well as their need for autonomy – but neither of these goals will be met unless concrete stefps are taken to translate such rights into reality.
Despite the obligation of the state to implement legal imperatives, there also exist moral imperatives for which society ought to take responsibility. This includes community-based organisations caring for people with intellectual disabilities to do the work they have undertaken and provide for and protect people.
It also includes family members and members of the community educating themselves about intellectual disability so that they can give their loved ones the best life possible. Education dispels stigma and in the absence of stigma people with intellectual disabilities are more likely to not only survive but thrive, leading to improved outcomes for these individuals.
Once empowered by knowledge, communities can go on to get involved in activities that include persons with intellectual disability who deserve to be treated with respect and dignity and afforded as many opportunities as possible. Communities, even those with very little resources available to them can engage in activities like walks in aid of people with intellectual disability or by providing employment to such individuals.
Intellectual disability need not be a life sentence. People with intellectual disabilities are quite capable of living lives that are meaningful, happy and fulfilling but it is only through implementation, education and activism that this can take place. Let us work together to achieve these goals.- Nicole Breen is project leader for information and awareness at the South African Federation for Mental Health.