On 26 August 2020, a young person with Down syndrome tragically lost his life in a shooting incident close to his home in Eldorado Park, near Johannesburg. Nathaniel Julies was fatally shot while police investigated a robbery in his street. He was simply a bystander and did not understand when police asked him some questions. The tragedy and resulting protest action against the police have been widely reported in the media. The community of Eldorado Park and the Down Syndrome Association of South Africa have been very supportive of his family.

The shocking death of Nathaniel Julies has turned the spotlight on persons with Down syndrome and their families in South Africa. What is needed across the board is more information and understanding, as well as greater awareness and empathy. Initiatives such as the Anti-discrimination and Social Justice Week organized by the University of Pretoria (30 September to 4 October) made a clear statement about the rights of persons with disabilities, and are helpful to maintain public attention. October is National Down Syndrome Awareness Month, an initiative that deserves unconditional support from all.

In this contribution I will offer some information and strategies for better communication in support of all families who have a child, sister, brother, aunt or uncle with Down syndrome, or any other form of intellectual disability. I also do it in support of one of my friends with Down syndrome.

What is Down syndrome?

Down syndrome is a genetic condition as a result of a chromosomal difference. A person is therefore born with the syndrome. Persons with Down syndrome always have some degree of intellectual disability and may also have certain health concerns. Because Down syndrome has a genetic basis, babies with the condition are born to families who are from all different cultural and socio-economic backgrounds, living all over the world.

Communication difficulties

Learning language and talking are among the most difficult skills for children and adults with Down syndrome to acquire. This may lead to significant misunderstanding and feelings of frustration when communicating. While persons with Down syndrome are typically friendly and eager to communicate, they may easily feel intimidated in unfamiliar situations.

There may be various reasons why a child or adult with Down syndrome does not respond when addressed by a stranger:

• They may be aware of their limited understanding and may not have the confidence to talk to a stranger.
• They may have a hearing loss and therefore do not clearly hear what another person is saying, especially when there is background noise.
• They may not understand the questions addressed to them, especially when they are spoken to in a language different from their home language.
• They may have specific speech difficulties. Talking clearly and fluently may be very difficult. The person may use gestures or has learned to use sign language.
• They may have some form of visual impairment and may not see well.

Authentic communication starts by acknowledging the dignity of another person, regardless of differences. We are not always aware of the subtleties of our nonverbal communication and speech, and how they are perceived by others. If we do not acknowledge that we are equal, there will always be some interference in our engagement with a person with Down syndrome, or with their family.

Five helpful communication strategies

When meeting a child or adult with Down syndrome, taking the following steps can improve communication and help them to feel more at ease.

1. Make sure your face is clearly visible for friendly eye contact. Consider removing your mask if the situation is urgent.
2. Reduce any background noise or music, or move away to a quiet area.
3. Listen attentively and patiently. Build trust by talking with respect and kindness.
4. Speak clearly and slowly, but keep your speech natural. Never talk down at anyone.
5. If necessary, ask their friend or family member to help with communication.

Authentic interaction with another person is always a matter of justice, dignity and respect. The objective is to move from miscommunication towards better communication; from discrimination and disregard towards respect; from harassment, exclusion and indifference towards warm inclusion.

Early communication intervention

Receiving speech-language therapy and education early in life can help persons with Down syndrome to communicate more effectively. However, it is never too late for intervention as adults with Down syndrome can also benefit from speech-language therapy. Managing hearing loss and learning sign language to facilitate speech development are proven ways for better communication in persons with Down syndrome. Speech-language therapists can collaborate with families to develop strategies to improve communication, while audiologists can conduct hearing tests and manage hearing loss. The Clinic for High-Risk Babies (CHRIB) in the Department of Speech-Language Pathology and Audiology at the University of Pretoria has been rendering specialist services to families with young children with Down syndrome and those with other risk conditions for the past 30 years. CHRIB offers communication and hearing assessments, as well as early intervention by means of parent coaching. Alternatively, contact your local clinic or hospital to find an audiologist or speech-language therapist.

It is time to act

It is time for Justice for Julies. We can do better. We urge the prosecutors and judge to ensure that justice is served. It is also time for all public officials to respect human rights and be trained to use better communication strategies. We can all do something to push back against discrimination and avoidance of persons with intellectual disabilities and their families. Using better communication strategies can turn strangers into acquaintances and friends.

Compiled by Alta Kritzinger, professor emeritus and Research Associate, former Head of CHRIB.

Department of Speech-Language Pathology and Audiology, University of Pretoria.

October 2020.