World Down Syndrome Day 2019

SAFMH News Room

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.

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