World Down Syndrome Day: With us, not for us
Down Syndrome South Africa puts in perspective how the rights of the intellectually impaired can be improved in the country.
IN Commemoration of World Down Syndrome Day, which is observed on March 21, Down Syndrome South Africa has highlighted three key points that serve to challenge the institution to better serve their community. Under the theme ‘With Us, Not for Us’, the national organisation threw a spotlight on the three following issues: Understanding the right to legal capacity; good practices in support of decision-making, and easy-to-understand communication.
Down Syndrome SA highlighted that people with Down Syndrome in South Africa face multiple forms of discrimination where they are dehumanised and ostracised due to the stigma attached to their disability.
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Understanding the right to legal capacity
“Denial of their legal capacity in opening up a bank account, entering into a legal marriage, and buying or leasing property are just some of the barriers they face in exercising their individual autonomy. Legal transactions entered into by persons with intellectual disabilities are considered void, by lacking in legal status, unless they are supported by a guardian or curator.
“In South Africa, the right to legal capacity in civil and criminal proceedings has been linked to the question of whether a person has a ‘consenting mind’ – the required decision-making capability. According to the law, persons with intellectual disabilities are considered incompetent in civil law. Equality before the law is a basic human right, therefore, in the law of evidence, they should be treated as competent witnesses, but they are not.”
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Good practices in supported decision-making
In South Africa, legal capacity can be restricted by a judge at the High Court through a guardianship or curatorship order, referred to as substituted decision-making. This essentially means that the judge can decide that the person with an intellectual disability is incapable of making informed decisions, so the judge will therefore appoint someone on the grounds that they will act in the person’s best interest. In order to make the decision, the judge is guided by multiple lawyers appointed in different capacities. This comes at a huge financial cost to families as this process can cost anything between R20K to R65K because an attorney and two advocates must be involved. It also does not provide assistance to the person with an intellectual disability by appointing someone close to the person but leaves the complete responsibility for decisions and approvals to lawyers, effectively substituting decision-making and not supporting decision-making.
Easy-to-understand communication
Due to extra chromosomes, most children and adults with Down Syndrome have communication difficulties. These difficulties can become contentious regarding the admissibility of evidence when testifying in a court of law, either as a witness, complainant or accused.
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Most cases of abuse, be it physical or sexual, involving persons with Down Syndrome, are most likely not able to proceed to a court of law. Investigation entails skills and careful assessment of the complaint and the charges, which does not necessarily exist at every police station. The police and prosecutors use the ability to effectively communicate in a court of law as a key requirement of being able to prove the case beyond a reasonable doubt, instead of relying on the first-report witness, possible medical reports, and other expert evidence that may be brought to court, in addition to what reasonable accommodations are made available for the complainant with Down Syndrome to be able to give evidence effectively.
People with Down Syndrome may have limitations in advocating for themselves and ensuring that their rights are protected, but it remains the responsibility of each one of us to ensure that we provide the correct support and accommodations for them to experience the same right to liberty and freedom, and to enforce those rights.
Throughout the month of March, Down Syndrome South Africa will be sharing key messages on the need for legal capacity, good capacity, good practices on supported decision-making and easy-to-read communication.
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