Tackling the challenges of living with a disability

About 400 special-needs children gather for a bake-off to mark World Autism Day (April 2). Picture: Ayanda Ndamane / African News Agency (ANA)

About 400 special-needs children gather for a bake-off to mark World Autism Day (April 2). Picture: Ayanda Ndamane / African News Agency (ANA)

Published Apr 17, 2023



Johannesburg - Every year, thousands of people around the world are diagnosed with some form of developmental disorder, including autism.

April is Autism Awareness Month, while April 2 this year was World Autism Awareness Day. Both aim to highlight an infrequently-mentioned disability, Autism Spectrum Disorder (ASD). According to Stats SA, two percent of South Africans have been diagnosed with ASD, while 7.5% has been diagnosed with some form of disability.

Autism is a developmental disorder that impairs a person’s ability to fully communicate and interact. It generally presents a broad range of difficulties, including challenges with social skills, obsessive or repetitive behaviour, non-verbal communication, sensory sensitivities, sleep disorders and seizures, among others.

Several factors may exacerbate the occurrence of autism. These include gastro-intestinal disorders, as well as mental health challenges such as anxiety, depression and attention issues.

Fortunately, autism can be diagnosed in children as young as eighteen to 24 months. This means ASD is detectable by parents and guardians, and the disorder can be managed according to the needs of the child.

Autism is a spectrum disorder, meaning it has many subtypes. Its occurence involves a combination of genetic and environmental factors; each person with ASD embodies a particular set of challenges, as well as various strengths.

ASD causes people to think, learn and solve problems differently to others. In some instances, this requires a significant amount of support, while in other cases people live fully-independent lives.

According to Autism Speaks – a non-profit autism awareness organisation – early intervention in cases of those diagnosed with ASD leads to positive outcomes later in life. Over time, educational resources, as well as behavioural and family therapies, may reduce ASD symptoms. Many organisations and programmes are available to address the challenges presented by ASD.

World Autism Awareness Day was declared by the United Nations in 2007 to create awareness of what it has described as a “growing global health crisis”.

Numerous people with disabilities such as ASD live strenuous lives. It is particularly difficult for those with disabilities to access educational and employment opportunities. Additionally, many institutions, structures and establishments do not consider the needs of people with disabilities. Many teachers, customer service representatives, religious leaders and medical care employees, among others, are unaware and untrained in addressing the challenges posed by autism.

Further, disabilities are more prevalent among women than they are among men. The available data suggests that 8.3% of females in South Africa are living with disabilities compared to 6.5% of males. Moreover, the prevalence of people living with disability increases with age, as more than half of people aged 85 and older live with some form of disability.

Research has shown it is better to take preventative measures to lessen the chances of one being diagnosed with a disability. This is especially valuable for young adults, who are more likely to neglect positive health habits. Eating a healthy diet, regularly exercising, embracing positive mental health practices, regular medical check-ups and refraining from excessive alcohol and drug use, are key to ensuring people are in optimal health as they get older.

Socioeconomic issues also play a pivotal role in the occurrence of disabilities. Those who live in unsafe environments are more vulnerable to poor health as a result of, for example, polluted water, air pollution and exposure to harmful chemicals. Others live in densely-populated areas, travel in excessively overcrowded transport, and work in unsafe facilities. As a result, they are particularly vulnerable to respiratory diseases such as pneumonia and tuberculosis, which can trigger a range of other illnesses, especially among older people.

Disabilities can have an overwhelming effect on the lives of those around them. Households led by people living with disabilities are significantly more financially strained. As such, these households are less likely to have access to basic services, good nutrition and quality healthcare. For many, this means they are unable to obtain the necessary resources and support to ameliorate the overall pressures that come from living with a disability.

Others are unable to effectively manage the challenges that come with disabilities. In many African societies, where there are deep physical, economic and institutional inequalities, most underprivileged people live with disabilities – undiagnosed and unassisted.

Although there is a wide range of disabilities, disorders such as ASD often go unnoticed, largely because many are unaware of it. Living with a disability can be hugely frustrating and debilitating. A lack of resources and support services can amplify the difficulties of those living with a disability. More worryingly, there is a negative social stigma associated with disability.

This deters some people from seeking help and can cause deterioration in a person’s quality of life. Being educated about the disability, and the resources with which to manage it, can make a huge difference in the life of anyone with a disability.

It is also extremely important that disability in society is tackled from an intermediary schooling level. This will ensure children are taught about disability from a young age and are armed with the knowledge to tackle it effectively and proactively. It is also extremely valuable to teach young people about disabilities so they are aware of strategies for effectively managing them.

Further, elderly people, who may already be living with disabilities, should be educated on the various ways of recognising and dealing with disabilities. This not only gives those with disabilities a chance to effectively advocate for themselves, but also gives them the knowledge to speak out about those organisations that may seek to exclude them based on their disability.

Disability needs to be at the forefront of our national discourse. Any disability is a pervasive but manageable condition and should be seen as such across our society. Disabilities may be an impairment, but they are not a roadblock. People who live with disabilities have a right to every opportunity accessible to able-bodied people. A disability may make it more difficult for a person to partake in certain activities, but we live in a developmental and progressive society that should inherently protect and support all the people who live in it.

According to our country’s Constitution, no person may unfairly discriminate against another person based on their disability. This means disability does not impede the supreme law of our land. Accommodating those with disabilities does not end with the installation of a wheelchair ramp. It is incumbent on every member of our society to be fair in their consideration of those with disabilities, to ensure they have adequate information and resources and that they have a fair shot at success.

*Tswelopele Makoe is an MA (Ethics) student at the Desmond Tutu Centre for Religion and Social Justice at UWC. She is also a gender activist.