November is National Disability Rights Awareness Month in the run-up to National Disability Rights Awareness Day on December 3.
As a mother to her 24-year-old son living with a disability, Elmarie de Bruin, has first-hand experience of the struggles (practical, circumstantial and societal) encountered when raising a person with disability. Ms De Bruin, from Sir Lowry’s Pass Village, was informed of her son, Willdon’s, Cerebral Palsy at the Helderberg Hospital when he was only 6 months old.
“I had a normal pregnancy it was only after birth when Willdon couldn’t swallow his milk it would come back out after every feed and that doctors thought something was wrong,” she said. After the Cerebral Palsy diagnosis medical staff explained the condition to her and he was under medical care and supervision until the age of about 3 or 4 years.
Thereafter she enrolled him in pre-school and for primary schooling he attended the Paarl School for children with special needs in Brackenfell. “He did very well there, he did swimming and even got his WP sport colours for playing boccia,” she said.
Willdon’s movement is very restricted, she says, and he is not physically capable of doing anything for himself. He needs assistance with bathing, dressing, feeding and all other daily care requirements.
“After school I placed him in a care centre, but I wasn’t happy with the level of care he got there, so I decided to look after him at home. He does need 24/7-hour care and is in a wheelchair.” Her daughter, Emihle, 15, she says, is of great help in caring for Willdon.
She believes that all persons with disabilities have the right to receive proper care and the right to mobility. Although her home is wheelchair-friendly she feels he is being deprived of his right to move freely as her son used to have a remote-control wheelchair which made his mobility much easier, she says, but he outgrew this chair in adulthood.
“I believe that all disabled people have the right to a normal life and to be treated the same, not different because they are disabled,” she says.
But what are some of the biggest and most common rights violations of persons living with disabilities?
According to Senecio, an organisation in Somerset West dedicated to improving the lives of adults with disabilities in the Western Cape, some of the biggest right violations they witness of those living with disabilities is the access to healthcare and social services. The struggle for many lies not only in getting to these health facilities, but once there, receiving the required medical care.
Iselle van den Heever, an Occupational Therapist, at Senecio says: “We have noticed that pain assessment and intervention is virtually non-existent for persons with disabilities, especially if they have difficulty communicating verbally, directly impacting their quality of life.”
Other concerning rights violations is the right to be treated with human dignity, with incidents of abuse and neglect of the disabled sadly all too common in communities.
“Adults with disabilities are often treated like children or “invalids”, being kept hidden or having their choice and autonomy taken away. People tend to be valued for their ability to “contribute” and be productive, while persons who are unable to work are of less worth in society,” she says.
In their observations, other common rights violated is the right to equality, while inaccessibility to places, result in exclusion, taking away the right to be part of society. A lack of wheelchairs is another hurdle restricting mobility of persons living with disability, the organisation reports.
According to Senecio, there are also very few mental health and rehabilitative services available, particularly in rural communities.
Addressing the violation of these rights is possible says Senecio, with various intervention strategies including increased training for caregivers, educating the disabled on their rights and resources to seek help from in cases of rights violations, as well as improving their access to social services.
“There is also a massive need for increased funding and resources for disability centres and healthcare services dedicated to persons with disabilities. Access to rehabilitative services on all levels need to be prioritised in the implementation of NHI,” said the organisation.
Spokesperson for The Western Cape Department of Social Development (DSD), Monique Mortlock, says the department has allocated over R148 million to support organisations in the disability sector.
Furthermore, Ms Mortlock says in promoting disability awareness during the month, the department is running protective, awareness and empowerment workshops.
The theme for this year’s National Disability Rights Awareness is creating a better quality of life and protecting the rights of those living with disabilities. The department was asked to shed light on some of their efforts directed at achieving these goals.
Ms Mortlock says: “The department, in partnership with 213 non-profit organisations, provides various support services to persons with disabilities to promote well-being, dignity, and protection.”
These include awareness and educational programmes and support groups and programmes for families and caregivers, with supportive and therapeutic services, including social work interventions and counselling.
Moreover, she says the department has 64 daycare programmes for adults and children with disabilities, 47 protective workshops services, 40 residential homes for persons with disabilities and 62 social service organisations rendering specialist support and care.
In closing Senecio says to address right violations of persons with disabilities improved working relationships between entities are needed.
“One of the biggest needs is intersectoral collaboration between government departments. Services are often fragmented, resulting in gaps in care between the Departments of Social Development, Health, Transport, Labour, and Women, Youth and Persons with Disabilities,” the organisation said.
Visit www.senecio.org.za for more information, send an email to info@senecio.org.za or call them on 021 852 3856.
