For centuries, people with intellectual disabilities have been systemically excluded from ordinary societal life. Treated as second-class citizens, such individuals have been isolated and placed in environments where they are often warehoused like unwanted and defective products, as opposed to being treated like human beings, deserving of inclusion, dignity, respect and a high quality of life. While there have been significant present-day attempts to change attitudes and integrate such individuals into employment and educational settings and also into communities, for many, the situation has not changed much, with the effect that people with intellectual disabilities continue to languish, living without purpose or meaning.
In its 2019 campaign for Intellectual Disability Awareness Month (March 2019), the South African Federation for Mental Health (SAFMH) intends to make an attempt to combat misconceptions surrounding intellectual disability and to show that not only do people with intellectual disabilities have the capacity to lead fulfilling lives, but also the ability to make meaningful contributions as responsible and productive members of society. Our campaign intends to blot out the differences between people living with intellectual disabilities and their non-disabled counterparts, showing that we are all human and deserving of dignity and opportunity. Our campaign is thus entitled “We are all pieces of the same puzzle.” It will canvass three areas. First of all it will look at the construct of people with intellectual disabilities being entitled to education, second the right to employment and third the right of people with intellectual disabilities to live in their communities. The aim is to show that when placed in conducive conditions, people with intellectual disabilities can not only survive, but thrive, to the benefit of not only themselves and their own betterment, but for the betterment and strengthening of society at large.
The Right to Education
Learners with intellectual disabilities are all too frequently left behind. In 2016 Human Rights Watch estimated that up to 600 000 children with disabilities were out of school in South Africa. Many of these were children with intellectual disabilities. Extant law and policy such as the South African Schools Act or Education White Paper 6 on Special Needs Education: Building an Inclusive Education and Training System (White Paper 6) are implemented at sluggish rates and the Constitutional entitlement of everyone to basic education is flagrantly flouted. Levy (2017) discusses the challenges associated with the education of learners with disabilities, citing waiting lists, that special schools have not been declared no-fee schools and the lack of schools in rural areas as important challenges. The Department of Basic Education (2017) indicates that there are 464 special schools and 715 full service schools in the country, but this is simply not enough to cater for the amount of learners in need of a quality education.
Progress has been made with the release of the Draft Guidelines for Resourcing an Inclusive Education System (Guidelines). The Guidelines are comprehensive and serve to make provision for education for children with disabilities more tailored to the needs of the specific child. This is integral and we commend the Department for Basic Education for having done so. It is our hope that these Guidelines can be finalised and implemented expeditiously, but with South Africa’s poor track record with implementing policy there is a good chance that this may not be the case.
The right to employment
Frequently cast to the wind are the chances of a person with an intellectual disability obtaining gainful employment. In South Africa only 1.2% of the workforce are people with disabilities, according to the 16th Commission for Employment Equity Annual Report, in comparison with the 2% employment equity target for employment of persons with disability. This can be attributed to aspects such as stigma, low skills levels due to inadequate education, inaccessible and unsupportive work environments, ignorance in society and inadequate access to information. Despite these challenges, the reality is that persons with intellectual disabilities can successfully perform a wide range of jobs, and can be dependable workers. They can also add a variety of skills and values to the workplace if they are given the opportunity to do so. The mere fact that a person has an illness or disability, does not mean that they ought to, by necessary implication, be unemployed or considered unemployable.
Within the South African context, the Basic Conditions of Employment Act makes provision for what is known as reasonable accommodation. This concept denotes making justifiable allowances for an employee with an illness or a disability who can still fulfil the inherent requirements of their job provided certain adjustments are made. Reasonable accommodation can take many forms, and its applications can differ dramatically from person to person. These provisions are not intended for the employee to end up with a diminished output, but simply to create a conducive environment for the employee to fulfil his or her obligations to the organisation.
Sometimes people with intellectual disabilities cannot enter into the open labour market or need to learn skills before they can do so. One of the mechanisms through which such individuals can be gainfully employed either permanently or in providing them with requisite skills to move on is through what is known as protective workshops. Protective workshops are generally run by NGOs at community level and are extremely important as they are a means through which people with disabilities who otherwise would not have the opportunity to acquire gainful employment can gain skills and receive support to – where possible – empower them for the open labour market. This gives them a sense of accomplishment and dignity; something of which they would otherwise have been bereft.
The right to live in one’s community
Institutionalising people with intellectual disabilities is a practice that has existed for millennia. The state and families often place such individuals in settings where they become invisible to society and where they are largely forgotten about. In a world abounding with liberating international instruments and in a country with a Constitution espousing dignity, equality and freedom, this is patently unacceptable. In addition to this, this practice is wholly unnecessary for as has been articulated, many people with intellectual disabilities can flourish within society, carving out meaningful lives for themselves that, as articulated, also benefit others. Thankfully, a growing body of knowledge shows that deinstitutionalisation and the implementation of what is known as the recovery model can greatly improve the outcomes of people with intellectual disabilities.
Deinstitutionalisation, according to Peterson (2004) is “the policy of discharging patients with mental health problems and/or intellectual disability from hospitals so that they can be placed in the community, and the decentralisation of mental health services [that] thus integrates into primary health care.” According to Jacobs (2015) the recovery model refers to a person “staying in control of their lives.” He refers to it as “a process, an outlook, a vision, a conceptual framework or a guiding principle.” He argues that the focus should not be on treatment and management of symptoms, but rather on the building of resilience and providing people with the tools to regain a meaningful life.
The World Health Organisation Europe (2003) published a study on community-based care. It highlighted the benefits and described the role of institutions as a back-up. This is an important consideration because sometimes hospitalisation would be necessary to aid in a person’s recovery or to contain a relapse. It should not, however, be the first or only port of call for people with intellectual disabilities. What is important is that such individuals receive the requisite amount of support living in their communities, be it through professional intervention, social welfare or support from peers and loved ones.
South Africa’s major move to implement the recovery model and deinstitutionalisation came in the form of a decision taken by the Gauteng Provincial Department of Health to remove patients with mental illness and intellectual disability from 4 psychiatric hospitals and place them in community-based care settings run by non-governmental organisations (NGOs) that were wholly ill-equipped to care for them. This had catastrophic outcomes, coming in the form of the Life Esidimeni tragedy in which 144 people lost their lives due to starvation, preventable illness and overall poor care. This has been hailed as the greatest en masse human rights violation since the Apartheid Era. This represents even worse human rights violations than if the individuals concerned had remained institutionalised and flies completely in the face of what deinstitutionalisation is intended to accomplish.
SAFMH is a non-governmental organisation seeking to uphold and protect the rights of people with mental illness, psychosocial disability and intellectual disability. For Intellectual Disability Awareness Month we will be engaging in an array of activities including drafting of policy briefs on the subject matter of our campaign, a policy dialogue and activities with people with intellectual disabilities. We call upon the state, families and friends of people with intellectual disabilities, educators, employers and other community members to take action and to bring people with intellectual disabilities out of the shadows and liberate them, giving them a sense of hope and dignity. We call too upon people living with intellectual disabilities to engage in self-advocacy and to fight against the stigma that has bound them. We are all pieces of the same puzzle if only we are put together into one. Let us end this division and grow into an inclusive society. #takeyourplace
Find The Policy Brief Attached
Issued by The South African Federation for Mental Health