Wrapping the Gift of Compassion

Nosipho is 17 years old. As a baby, she was very quiet. One hardly heard a sound from her. But she took her time with all the developmental milestones. To crawl, walk, talk and play with that vitality most children are blessed with. She seemed to inhabit a world of her own, content to sit alone. And be left alone.

The day she began attending school, was the start of a nightmare for her that lasted many years. She was jeered at, jabbed, poked, ridiculed and called all the nasty names people’s minds could conjure up. By her peers, and some of the teachers. She couldn’t exactly read and write, so she was simple amongst other things.

At home, her parents and almost all the family get irritable and impatient with her. Her mother gets exasperated by what she thinks are her daydreaming habits and just being wilful, so she’d never had a proper conversation with her. She shouts curt, accusatory words at her.

Before her 17th birthday, she has been molested, raped and physically assaulted. All in the course of a life, albeit short life yet.

Intellectual impairments affect how a person learns, understands information, solves problems, and manages everyday life. They can make tasks such as communication, decision-making, social interaction, and independent living more challenging. These difficulties usually begin in childhood and vary from mild to severe.

                                                                                              According to Disability Info South Africa

Social worker, Nontando at REHAB as part of her job, makes visits to primary schools and high schools to sensitise teachers, parents and communities about Intellectual Disabilities (amongst other things).

She then works in tandem with a psychologist that REHAB has a working relationship with. Children or people will then be diagnosed by the psychologist as mild, moderate, severe and profound.

Down Syndrome, Cerebral Palsy, Foetal Alcohol Spectrum, and Dyslexia are just some of the examples that would fall under Intellectual Impairments.

In this post, Nosipho is fictional but social workers like Nontando and psychologists, uncover cases like that of Nosipho and then some. For Nontando, coming across the Nosiphos of this world begins an arduous journey to help her find her place under the sun. For the family and everyone around her is the near impossible task of changing mindsets through education and sensitisation.

Chipo Gwaze, the Director at REHAB says,

“For me, mental disability is especially agonising because it doesn’t always wear a face that reveals exactly why some children are the way they are and that they are different at face value. So, it tends to be invisible.”

As I wrap up this series, people behind all these organisations are the gifts of compassion. They move, act and do what is in their power to help bring belonging, connections, support and healing for people who undoubtedly need it.

At the crux of this last post is the relaying of information that hasn’t made it into the articles but is important. I break down the organisations I engaged with in East London below.

REHAB

Supports people with visual Impairment, physical and mental disabilities. Their services are wide ranging but include access to

• Grants, schools, housing.

• Wheelchairs, white cane, medication and physiotherapy.

• Skills development, organic farming/cultivation skills, beading, baking.

• Linkages with DEET, which helps with driver’s licenses and discs.

• Resource Centre that hires out assistive devices for mostly physical disabilities e.g. hospital beds, commodes, walking rings.

• Linkages with Department of Health for things like wheelchairs and transporters.

• Accessibility Audits for Institutions like universities.

• Advocacy, awareness, sensitisation are daily tasks hard at work to promote inclusiveness and independence.

• National Institution Affiliates

-          South African Federation for Mental Health

-          National Council for Persons with Disability

-          South African National Council for the Blind

-          Department of Social Development

ELAN- Empowering Lives, Affirming Neurodiversity

It useful to note that autism often comes along with other things, not by itself. It’s commonly diagnosed with ADHD.

 – Kate Currin @ELAN

• ELAN runs a parent/carer support group of about 100 members who hold monthly meetings or get togethers. These alternate between just for parents/carers and the entire family.

• They have a lanyard project they run, as well as autism awareness courses. They offer SACE registered courses to teachers as part of efforts to increase awareness and inclusion.

Below are visuals from ELAN.

Autism Sinethemba knows what faces parents after the shock of diagnoses wears off and questions come flooding into minds and conversations. It’s a dedicated NGO dedicated to early intervention for children with autism. In a nutshell, they work to answer these very familiar questions below.

• Where can I find information?

• Who can help me?

• Who can help my child?

• Where will he go to school?

• How do I maximise his potential?

Carel du Toit East London: A place where deaf children learn to speak just says it all. Check it out. It’s run by a very passionate, extremely helpful, wonderful woman, who in many ways opened a doorway to this curious quest I ended up on. Katherine Herman.

Morsels of Truth About Persons with Disabilities or Neurodivesities

• Being different can be very lonely and hurtful.

• Often, persons with disabilities have more than one diagnoses.

• They are often abused by people before diagnoses, sometimes even after.

• There’s often something they are so good at, it can be a be a source of dignity, resourcefulness and/or independence.

• They and their families often need lots of information and services appropriate for their needs.

• It’s good to remember that “the earlier the diagnoses, the better.”

• They and their families need lots of emotional support to feel accepted and understood.

• The big elephant in most people’s living room is often denial. It only delays, hurts and exerts unnecessary pressure and anxiety on the entire family, especially the one who needs the acceptance.

I can only hope that I’ve made some meaningful contribution. So far, there has only been one lesson in sign language. My tutor was suddenly snapped up by corporates who thankfully paid him for his much-needed services. I’m quite happy and content to have “lost” him that way. Besides all that, my own personal life has had me caught up in its own, familiar dramatic patterns. I will find another teacher and share that journey with you.

“For each and every person I’ve met along this way which was started by curiosity ... may goodness, mercy and grace be with you always.”

Till we meet again.

 PS: We are working on finding better audio voices for our blog posts!