Broken and Beautiful: A woman’s journey with cerebral palsy
Being the role model she never had is what inspired 24-year-old Jessica van der Merwe to write the book “Broken and Beautiful” about her experience living with cerebral palsy.
In South Africa, around 3.3 million individuals have been identified as persons with disabilities.
This year’s Disability Rights Awareness Month (DRAM) is celebrated under the theme “Celebrating 30 Years of Democracy: Creating a Disability-Inclusive Society for a Better Quality of Life and Protection of the Rights of Persons with Disabilities.”
Van der Merwe, a Stellenbosch university student from Somerset West, said the book came about as an outlet during a long hospital stay last year.
She was 18-months-old when she was diagnosed with cerebral palsy.
“I have spastic cerebral palsy and I am hemiplegic on one side of my body, my right side.”
Van der Merwe said her mother explained her condition to her at a young age which helped.
“I was lucky my mom told me from when I was small what it was and how it would affect me,” she said.
“My intellectual ability is still good but it takes me longer to learn work.
It was difficult for me to write or do anything physical that required my hands or feet.
“I couldn’t do any of the sports because my balance was bad.
“I was bullied quite a lot because I always had to have extra help on things, so I never could finish my work on time.
“As a teenager, I had many surgeries, which meant I missed a lot of school. When I was at school, I was often in a moonboot or a cast, which made it difficult to fit in,” she said.
Throughout that time, she never met anyone with the same condition at school, so she hopes her book can be the role model or peer she needed when she was younger.
Given all the occupational therapy she had to do as a child, Van der Merwe also felt that people not living with a disability, including parents, often don’t understand what it feels like for those who do.
“Sometimes you don't want to be sick, you just want to exist as a normal human,” she said.
Van der Merwe said the idea behind the book came during her Honours year at university, when she joined an online support group for research purposes where parents were giving each other advice.
“I realised they didn’t understand the child’s perspective and the impact on their kids.
“I never met someone with CP, I was the only one at my school and at university. So I wanted to be almost the role model I needed and the book can be informative for parents,” she said.
“I realised I’m actually fine, as soon as I decided to see what I'm good at, instead of trying to catch up to other people.
“If you have a big dream, just start and see what happens, just start and try. We put our own limits on ourselves. Start thinking you can do it, then you can do it,” Van der Merwe said.
At the launch of Disability Rights Awareness Month, Women, Youth, and Persons with Disabilities Minister, Sindisiwe Chikunga said: “As a department, we have elevated the principle of selfrepresentation and the mantra ‘nothing about us, without us’ not merely as one of our advocacy points but as a central tenet in everything we do.”
“Disability inclusion is not merely a matter of advocacy; it is a constitutional imperative enshrined in our Bill of Rights,” the minister said.
Among the government’s initiatives, Chikunga said was a project with the Department of Basic Education.
This project will profile the State of Special Schools across South Africa and the educational journeys of youth with disabilities.
“This is part of a major project we have in mind to pair every special school with a State-Owned Company that will dedicate sections of their social investment budget to support teaching and learning, assistive devices, and the school’s infrastructure needs.”
Cape Times