Finding hope in each other – the healing power of community & belonging
by Kirsten Steenkamp
One would have imagined that South Africa’s robust constitution would’ve elevated the needs of this vulnerable population, but disabled individuals are profoundly marginalised across the spectrum of human rights. 3 November marks the beginning of Disability Rights Awareness Month: a significant period for advocates to rally public interest and a time in which ability activists share their powerful lived experience.
A parent recently told me that “Others won’t learn from our knowledge if we don’t share”. And what I have come to learn is how everyday life presents untold barriers to accessibility and inclusion. Burdened with astronomical costs associated with disability, impoverished caregivers are regularly challenged with seemingly impossible choices.
For instance, when it costs R300 per way to fetch your child from an inclusive boarding school across the city, could you imagine having to decide between putting food on the table or their education? For parents with disabled children living below the poverty line, the physical and psychological demands are impossible to bear alone.
Between Kommetjie and Noordhoek – on the Cape Peninsula – lies a community no larger than 2km2. The name that lends itself to the Xhosa meaning “We will succeed” was founded by residents in 1990. According to locals, more than 40 000 people now call Masiphumelele home. Allowing me to sit in on a unique meeting in the heart of Masi is Bukiwe Mkhuba, a special mother whose history contextualises the importance of my visit.
In 2009, a Red Cross Children’s Hospital referral led Bukiwe to The Chaeli Campaign for the first time. Because her daughter, Inga, was born with severe cerebral palsy, she was in desperate need of therapy support close to her home in Masi. Collaborating with Sinethemba Educare centre was Rosemary Luger, The Chaeli Campaign’s occupational therapist and therapy outreach advisor. Working very closely with Rosemary, Bukiwe realised that children with disabilities require vital education and support – aspects of disability care that government facilities and clinics fail to adequately achieve.
Learning quickly the skills required to tend to Inga’s needs – from stimulation and feeding, to posture and seating – Bukiwe became passionate to impart this knowledge to others. Then, through a language gap between trained professionals and locals, Bukiwe’s entry point became clear.
“I started as a translator to assist communication barriers between therapists and moms”, Bukiwe says, realising her position to add value in her community. For caregivers in Masi who were struggling to cope, she was driven to support their needs. For those who were managing their complex responsibilities, her challenge was to help them thrive!
Bukiwe’s interests grew from her belief in inclusion, learning painfully that disability rights are largely ignored by those who are not directly impacted by it. Growing this organic relationship into official employment the following year, Bukiwe was a natural fit.
As a facilitator and community development worker, Bukiwe took on several important roles. Continuing to support outreach therapy in Masi, she began weekly home visits with parents in the area and helped redistribute local disability stories via Chaeli Campaign “Nolwazi” newsletters. 2010 was also the year in which she began the Masi parent support group – a safe space in which parents could openly share their troubles, connect with one another and feel deeply understood. This venture altered Bukiwe’s life trajectory forever.
“I started this group as a mother with no formal education, but the severity of my child’s condition has grown me – learning from different departments what is speech, physio, cardio, ENT, brain damage, delay etc.”. More than 10 years after this group first began, I have the privilege to sit amongst these warrior mothers to gain insight into their struggles and triumphs. In this room, the unconditional connection was palpable…
Today I share some of what I learned about the power of belonging and how hardships can strengthen you. But perhaps my greatest wish is for you to contemplate whether being honest and vulnerable may just be the vehicle through which hope is found.
“We’ve got families, but sometimes we don’t get the support we need. The way to go forward – I didn’t know where to start to understand how to help my daughter. Clinic? Hospital? School? Therapy? The support and love we don’t get – we get here at the group. And through my struggles I have learned what it means to have this support.”
Bukiwe’s Masi group has functioned as a pillar of support for dozens of parents over the years, sharing incalculable advice and encouragement. New parents are counselled to ask questions upon each visit to their child’s therapist and hospital, growing their understanding of their child’s condition and best care practice over time. Sometimes the group’s reinforcement takes the physical form of a Chaeli Campaign referral from Bukiwe or Rosemary. Other times, when a child is sick or in hospital, the group sends messages of support. Constantly imprinting their belief that “things are gonna be fine”, it is hope that ultimately drives the strength to carry on fighting for their children.
“When we stay together and share stories, we learn that my challenge is no bigger than others. To see that other parents have been strong for a long time – some for 17 and 20 years – this helps parents to grow, to see things differently. We may feel we lose hope, but we see others and get hope.” Significantly, these parents learn in their trials that “For others to support you, the first thing you do is to accept it.”
Hearing other parents’ stories over time, one mother shares her realisation that she needed to show more love to her child – to show how she accepts him. Demonstrating unconditional love for your child is not only vital to their feeling of belonging in the family, but also in the community. “The community will be watching you to see how you respond. If negative or positive, they will do the same.”
Having a positive attitude benefits you and the child – a sense of acceptance born from this unconditional love. Expressing that “It’s love that helped me with everything”, Bukiwe gifts the parents under her guidance with continuous wisdom. But the fundamental influence of the group exists within its healing belief: the shared understanding that “It’s made possible by us – we’ve grown each other.”
The month-long campaign for disability rights awareness leads up to 3 December: the International Day of Persons with Disabilities (IDPD). Do not be afraid to learn more about disability and the inclusive world which activists, advocates and allies are advancing. Help us support the rights of disabled people to live with dignity and respect by consuming disability content, speaking out against social injustices, promoting universal design and by using your voice to further relevant conversations. The world needs each one of us.