World Bipolar Day 2019 represents a golden opportunity to look back at the past, examine the present and determine what we want for the future of people with Bipolar Disorder. This year, the South African Federation for Mental Health has elected to commemorate this occasion by launching a media campaign surrounding the idea that Bipolar Disorder does not have to be a life-sentence. People with this illness can live happy and fulfilling lives provided they receive the support they need. SAFMH has composed a press release to this effect. It appears below:
The 30th of March 2019 is World Bipolar Day. According to the World Health Organisation (2018) Bipolar Disorder is a prevalent mental health condition affecting approximately 60 million people worldwide.
According to Harddon, Hayes, Blackburn et al (2013), Bipolar Disorder can be considered a Serious Mental Illness (SMI). This is not to say that this condition is a life sentence. People with Bipolar Disorder can lead happy and fulfilling lives if adequate support structures are put in place for them to do so. Unfortunately, all too often, this is not the case, and these individuals are left in a state of flux, brought on by unmanaged symptoms and a lack of support.
Sifiso Mkhasibe, a Programme Assistant at the South African Federation for Mental Health, refers to himself as a “survivor of Bipolar Disorder.” Mkhasibe struggled with the disorder for years- at times hospitalised and isolated- until he was provided with the right treatment regimen and proper assistance. Today he is confident and successful, having taken control of his life:
“Days, weeks, months went by, until I realised enough is enough. I had to take ownership of Bipolar Mood Disorder. I educated myself about the symptoms I had experienced when I was diagnosed…once I had learned how to manage my Bipolar Mood Disorder, life started to become clearer, I knew what I had to do and how to do it. I was no longer a victim of my Bipolar Mood Disorder. I stopped defining myself as a person with Bipolar Mood Disorder, now I just say I had those symptoms when I was diagnosed. I am on medical treatment and I do not present those symptoms any longer.”
There are different support structures that, if put in place and available to those needing it, can aid in the recovery of people with Bipolar Disorder. According to the South African Depression and Anxiety Group (SADAG) (no date) treatment can take the form of the provision of medication, psychotherapy, family support groups or periodic hospitalisation as a last resort. Authors like Mkize (2003) highlight that assistance from traditional healers is also one of the options available to people with mental illness. A further mechanism which can be used to support such individuals is reasonable accommodation in the workplace as contemplated in the Basic Conditions of Employment Act 75 of 1997. There are thus many mechanisms that can be employed to enable people with Bipolar Disorder to have a good quality of life.
There are many reasons why duty-bearers fail individuals with Bipolar Disorder. One of them is the inadequate number of trained professionals to care for such individuals. According to the World Health Organisation’s Mental Health Atlas (2019), South Africa has only 1.52 psychiatrists per 100 000 people. The same document indicates that there are only 16.56 beds available in psychiatric hospitals per 100 000 people. There is no evidence surrounding support groups. In addition, only R99.47 is budgeted per person for mental health services on an annual basis. What is perhaps the most problematic of all is the fact that, in many instances, there is simply no data available on the state of mental health in South Africa, with the Atlas indicating in many places that there is no information or that no information has been reported on various items such as community-based organisations or length of stay in inpatient facilities. Another reason is the failure to employ adequate numbers of people with disabilities, - let alone take steps to accommodate them. According to the Commission for Employment Equity Annual Report (2017/2018), only 1.3% of the workforce were people with disabilities, in comparison with the employment equity target for employment of such individuals which is 2%.
The challenges faced by individuals with Bipolar Disorder are exacerbated by the fact that existing legislation and policy are poorly implemented. Instruments such as the Mental Health Policy Framework and Strategic Action Plan 2013-2020 often remain paper-based commitments rather than becoming living documents, with the end of this policy’s trajectory looming and no publicised steps being taken to update it. The Mental Health Care Act of 2002 is also becoming outdated and requires review but again, seemingly nothing is being done to facilitate this process. This means that despite protective mechanisms having been created for people with Bipolar Disorder and other mental disabilities, there is very little actually shielding them from the challenges they face within society.
One of the reasons that people with Bipolar Disorder remain underserved is because of prevailing societal stigma. In general, little is known about the fact that Bipolar Disorder can be managed and a perception exists that people who have this illness are capricious, unreliable and incapable. SAFMH strongly dissents from these notions. People with Bipolar Disorder can be strong, resilient and successful in all aspects of life, including relationships, education and employment. More public education and awareness is urgently required if we are going to start dispelling the stigma surrounding Bipolar Disorder.
SAFMH is a non-governmental organisation (NGO) seeking to protect and uphold the rights of people with mental illness, psychosocial disability and intellectual disability. We submit that it is wholly possible for any individual to thrive in their surroundings if they are given the appropriate tools to do so. As such, we call upon the state to work towards improving service delivery for people with Bipolar Disorder by averting the issues outlined above. We also call upon this duty-bearer to ensure that law and policy are implemented and kept properly up to date. Similarly, we call upon organisations engaging in advocacy and awareness-raising activities to provide information to the public to diminish stigma and enable communities to better support their loved ones, employees and school-going individuals, and for the state to actively invest in these types of activities. Finally, we also call upon people with Bipolar Disorder to empower themselves and begin to self-advocate as Mr Mkhasibe has done.
Bipolar Disorder can be disruptive to a person’s life, but it need not be a dominating force. With proper treatment and care the quality of life of persons with Bipolar Disorder can substantially improve. It’s time to #takeyourplace in making this a reality.
Project Leader: Information and Awareness
South African Federation for Mental Health
072 2577 938
011 781 1852
As indicated in another article, March 2019 is Intellectual Disability Awareness Month. World Down Syndrome Day falls within this space of time, on the 21st of March. The theme for SAFMH's campaign for this period is "We are all Pieces of the Same Puzzle." Indeed, while many would see distinctions between themselves and those with Down syndrome, we advocate for the idea that we all fundamentally want and are entitled to the same things- things like education, employment and to live in one's community. Unfortunately prevailing stigma in society leads to these individuals being denied such opportunities. This is compounded by South Africa's failure to domesticate the United Nations Convention on the Rights of Persons with Disabilities, making the legal system fragmented and disparate.To this effect, SAFMH has put out a press release on this topic. It appears below:
The 21st of March is World Down Syndrome Day. It offers an opportunity to examine how we as a society treat these individuals and what improvements can be made to their lives through law and policy reforms as well as through advocacy and awareness raising interventions.
Down syndrome is a fairly prevalent condition according to the World Health Organisation (no date) with the estimated incidence being 1 in 1000 to 1 in 1100 live births.
According to Down syndrome South Africa (no date), people with this condition fall into the category of mild to moderate intellectual disability, meaning that they can function in a myriad of different environments.
Despite their capability, people with Down syndrome are often denied the opportunity to go to school, to obtain and maintain gainful employment or to live in their communities. Often underestimated, they are treated as second-class citizens, denied of agency and stripped of prospects for self-improvement.
For millennia, people with intellectual disabilities have often been kept in institutions or hidden out of sight; with families sometimes ashamed of them. A vast spectrum of research has demonstrated that this is not the case and that hospitals should be used as a last resort only. This is particularly the case for individuals with Down syndrome who can often live with a relative degree of independence.
The law and policy intended to provide for and protect people with disabilities is comprehensive in places but somewhat disjointed and disparate in others. This is largely due to South Africa’s failure to domesticate the United Nations Convention on the Rights of Persons with Disabilities through implementation of disability-specific legislation.
Presently, the rights of people with disabilities are scattered in droplets throughout our body of law. This problem is compounded by the fact that much of the extant law and policy is not implemented as well as the fact that much of it requires review such as the Mental Health Policy Framework and Strategic Action Plan. Combined, these issues can well lead to an individual with a condition such as Down syndrome being left to languish- their rights remaining woefully unrealised.
With a clearly visible disability, people with Down syndrome are often victims of stigma. Corrigan and Watson (2002) discuss stigma in the context of people with mental disabilities. They illustrate that people with these illnesses are “challenged doubly” with the symptoms and effects of their disability on the one hand and stereotypes and prejudices on the other. This diminishes their chances of having a good quality of life.
The South African Federation for Mental Health is a non-governmental organisation (NGO) seeking to preserve and uphold the rights of people with mental illness, psychosocial disability and intellectual disability. In view of our mandate we wish to issue the following call to the state:
First of all we request that the state take rapid and proactive steps to enact legislation enabling people with intellectual disabilities who can function within society to do so through the promulgation of disability-specific legislation.
Secondly we request that the state accelerate efforts to implement existing instruments and to ensure that those with a dwindling trajectory or are outdated are reviewed.
Thirdly we request that the state embark on advocacy and awareness-raising initiatives to dispel stigma surrounding Down syndrome specifically and intellectual disability broadly.
We also call upon the public to work towards gaining an education about Down syndrome so that they are in a position to advocate for the rights of people with this condition and thus to make proper and informed demands of the state.
Down syndrome is something that should neither be neglected nor feared. In a democratic society there is no justifiable basis for the rights of individuals so-situated not to come to fruition. Be it poor implementation or violation there are clearly changes that need to be made with a dash of speed. #takeyourplace in ensuring a dignified existence for these individuals today.
Human rights day is an important day in South African history. It enables us to examine how far we have come and how far we have yet to travel. Unfortunately the rights of people with intellectual disabilities have been chronically neglected abd vulumes remains to be done to ensure that their rights are respected and protected. In this regard, the South African Federation has put out a press release. It appears below:
Human Rights Day reminds us that it’s the fate of society’s most vulnerable that is the true measure of our success – or our failure – in matching human rights ideals, says the South African Federation for Mental Health (SAFMH).
And among the most vulnerable are citizens with intellectual disabilities – whose dignity and rights are often overlooked because they are poorly understood, or all too easily ignored. The voices of those who lack agency or the ability to self-advocate are often drowned out, their wishes and their needs scattered to the wind.
In a country where services are woefully inadequate, can their rights be realised? And what can be done to improve the situation of such individuals and to allow them to live with a sense of dignity?
The right to inherent dignity is violated at every affront to any other human right, for in the absence of any given entitlement, a life becomes undignified. If there are inadequate mechanisms to enforce both civil and political and socio-economic entitlements, a person’s sense of dignity is essentially voided.
When a person is vulnerable the realisation of the right to dignity becomes especially problematic because such individuals require a “leg-up” to place themselves on equal footing as others. This is not aided by the pervasive stigma with which people with intellectual disabilities are contended or the failure to prioritise the rights of such individuals.
So what is there to be done? SAFMH has some propositions. As a non-governmental organisation seeking to protect and uphold the rights of people with mental illnesses, psychosocial disabilities and intellectual disabilities SAFMH aims on Human Rights Day 2019 to highlight the plight of people with intellectual disabilities and to demonstrate the lack of dignity in the lives they lead and the need to change things for the better. SAFMH believes there are steps to be taken, and we have chosen this Human Rights Day, 21 March 2019, to highlight the claims to dignity of people living with intellectual disabilities, and to deliver a three-part challenge aimed at securing real progress towards that objective. This call to action is made in view of our broad mandate as an advocacy body, working to influence both the course of decision-making processes as well as the treatment meted out to people living and working at grassroots level.
First, we call on the state as the primary duty-bearer in upholding the pillars of the legal system to ensure that laws and policies are implemented and further developed in the interests of people with intellectual disabilities. Examples of such an instruments are the Mental Health Care Act Mental Health Policy Framework and Strategic Action Plan 2013-2020.
Second, we call on the families and caregivers of people with intellectual disabilities to become educated in the types of services available and the types of services needed so that they can advocate for their loved ones with intellectual disabilities. This would include finding out how to contact services supporting people with intellectual disabilities and through locating information about the rights of people with intellectual disabilities and what they are entitled to. An example of how one may educate themselves would be through accessing documents designed for this purpose such as the SAFMH Guide to Supporting Loved Ones with Intellectual Disabilities or through approaching one of SAFMH’s mental health societies which operate in different parts of the country.
Finally, we call on community-based organisations providing services to people with intellectual disabilities to provide them with the tools and support they need to self-advocate, utilising appropriate human rights education as an integral tool to do so. People with intellectual disabilities often need to be assisted in order to raise their voices and it is through learning about their entitlements and in being supported to compare what they have versus what they deserve that they can begin to demand what they want and need. People with intellectual disabilities should also be encouraged by those providing services to them to become involved in human rights activism such as the South African Mental Health Advocacy Movement.
As a non-governmental organisation (NGO) seeking to uphold and protect the rights of people with mental illness, psychosocial and intellectual disabilities, SAFMH makes these calls in the conviction that it is possible to change lives for the better and to truly ready South Africa for a new era, one in which the legal guarantees bestowed upon people with intellectual disabilities by legal instruments become a reality in their lives.
Project Leader: Awareness and Information
011 781 1852/ 072 2577 938
The month of March is Intellectual Disability Awareness Month. This occasion allows us to look back at the past, examine the present and envisage the future we want for people so-situated. Importantly it is an opportunity to learn more about intellectual disability and how to eliminate stigma surrounding such individuals. People with intellectual disabilities are chronically underserved and often bear the brunt of the failure of duty-bearers to take responsibility for vulnerable individuals. In view of this occasion, SAFMH has issued a press release on the subject. It appears below.
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.
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.
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.
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
Project Leader: Information and Awareness
South African Federation for Mental Health
011 781 1852
072 2577 938
On 14 February, scores of children were removed from the care of 2 Môrester Children’s Homes and from the House Mea Children’s Home all located in Kwa-Zulu Natal. The removal took place on the strength of untested allegations of abuse and racism. Officials of the Department of Social Development accompanied by police swooped in and removed the children without a court order. According to the Children’s Act, such removals can only be enacted in emergency situations where the children concerned are in imminent danger.
The Children’s Act also provides for automatic judicial review of removals of children in the absence of a court order, according to which the matter must be brought before the court before the expiry of the next court day. This is a feature derived from the case of C and Others v Department of Health and Social Development, a Constitutional Court case that led to the amendment of the Act. When the Môrester and House Mea matter did eventually come before the court on 20 February, the presiding officer ordered that the children be returned to the Children’s Homes.
Failure to obtain evidence of an emergency situation is thus very serious. Removing children summarily without just cause is patently unconstitutional as it violates the rights of the child in terms of section 28(1) of the Constitution – that a child may not be made subject to abuse and degradation – and section 28(2), that the best interests of the child are of paramount importance in all matters concerning the child.
While this does not address – or serve to prove or disprove - allegations of wrongdoing on the part of the Children’s Homes, what it does mean is that the Department of Social Development’s brazen actions were unfounded and that they could have gone to court prior to effecting the removals. Added to this, the Department could not provide any of the requisite documentation necessary for the removals to occur in the first place. In the view of the South African Federation for Mental Health (SAFMH), this represents a serious transgression in terms of the Constitution as well as the Children’s Act.
The aspect that predominantly concerns our organisation is the mental health of the children concerned and the trauma they must have undergone during the removal process. Children residing in a child and youth care centre are children living outside of the family setting and who have often undergone the distress of a parent passing away, or have experienced abuse. This already renders them more vulnerable than most children and their need for stability is thus increased. Removing the children without following the necessary legal processes and ensuring that the necessary protective mechanisms, which safeguards their emotional well-being, is frankly reckless. The removal of children in this manner is frightening and, reinforces their experience of instability and mistrust of older people who have the power to upend their reality. This can be a catalyst for poor mental health and can even lead to the onset of a mental disorder.
The words of Judge John Murphy are poignant here. In the case of Centre for Child Law v MEC for Education and Others, he stated:
“I have to pause here, perhaps in a moment of exasperation, to ask: What message do we send to the children that they are to be removed from their parents because they deserve better care and then wholly neglect to provide that care? We betray them and we teach them that neither the law nor state institutions can be trusted to protect them. In the process we are in danger of relegating them to a class of outcasts, and in the final analysis we hypocritically renege on the constitutional promise of protection.”
This situation harkens back to the Life Esidimeni tragedy in which the Gauteng Department of Health executed a reckless and dangerous operation of rapidly transferring mental health patients en masse from four psychiatric hospitals to nongovernmental organisations (NGOs). The NGOs were wholly ill-equipped to care for the patients, resulting in the death of 144 individuals from preventable diseases, starvation and overall poor care. The series of decisions taken to enact this process – hailed as “Project Marathon” by the Health Ombudsman – was taken thoughtlessly with dire consequences. It was as though they were taken on impulse without considering what kind of outcomes awaited the individuals concerned. No efforts were made to ensure that facilities were appropriate, that the staff were qualified or that the NGOs were adequately resourced. No heed was paid to the cries of civil society that disastrous results could ensue should the operation be executed.
Indeed, it appears that the state has taken no lessons from Life Esidimeni. There still appears to be a perception within the state that reckless behaviour is acceptable and that government can act on impulse, even outside the Constitutional parameters and those established by enabling legislation. Such were the actions surrounding the Môrester Children’s Homes as well as House Mea Children’s Home.
We presume neither innocence nor guilt on the part of the Children’s Homes. That is the purpose of the investigation that is currently under way. We merely wish to highlight the potential ramifications of the removal, and that the state’s approach in this situation was reckless and ill-considered. After Life Esidimeni, it was the hope of civil society and other stakeholders that the state would begin to approach matters differently. Unfortunately this appears not to be the case. The question arises how many disastrous events have to ensue before the state learns its lesson? How many people have to suffer before government officials see the error of their ways? The short answer appears to be not any time soon.