When the Protector Becomes the Predator

 One of the most topical issues in the news this past week was the alleged police shooting incident that killed a 16-year-old boy with Down Syndrome in Eldorado Park, Johannesburg. According to Nathaniel Julius’ family, the police had tried to ask him questions, which he failed to respond to owing to his disability. As with many stories of this nature, many versions will come out of the woodwork, making it harder to tell fact from fiction. What is constant, however, is that an unarmed boy with a disability was gunned down.

The late Nathaniel Julius

As a mother to a teenager with autism, the incident hit close to home and completely ruined my day. So many questions buzzed in my head, like for instance, how did the cops not see obvious signs of Down Syndrome on the child, who gave the policeman who pulled the trigger the authority to be judge, jury and executioner? Even if Nathaniel had the capacity to speak for himself, the very first Miranda Right is the right to remain silent. No-one ought to be executed for failing to answer questions. The possibility of such a horrible incident happening to my son, Victor, makes me quake in my boots. If a young man with visible signs of a developmental condition can wantonly be gunned down like that, heaven help those that look ‘normal’.

My greatest fear comes from the knowledge that Victor would be a perfect candidate for the kind of atrocity witnessed in Eldorado Park. Although he can speak, he is not always articulate, especially in situations where he feels apprehensive. If confronted by the police, he is not likely to co-operate. He would probably have an epic meltdown, or probably just walk away, which in turn would provoke the officers, who might view this as an act of defiance. Autism does not have tell-tale signs, unlike Down Syndrome. I view it as an advantage because people stare at and taunt those that look different, which can make public life very uncomfortable for people with visible disabilities. However, in light of potential police brutality, the lack of discernible signs can actually work against him. People expect him to function in a certain way, and are always shocked when he doesn’t. Because he is very tall and looks mature, I’ve had vendors or sales people enthusiastically try to sell their products to him, whereupon he just gives them a blank stare or will quickly cling to my arm so that I can intervene. The thought of him being surrounded by gun-toting aggressive policemen makes my blood run cold. I invest a great deal of time in resources to help him become an independent and contributing member of society one day. But with the constant threat to his life caused by a lack of awareness on intellectual disabilities or sheer cruelty, he’s condemned to always being tied to my apron strings for his own safety. That is not fair.

I have read many news stories and accounts of people with intellectual disabilities being harassed, unjustifiably arrested, or killed by the police, particularly in the United States.  To have this in our own backyard, where the spirit of ubuntu is hyped, is both petrifying and disconcerting. They say it takes a village to raise a child. It is every society’s duty to look out for its vulnerable. Well, this village of gunslingers failed Nathaniel and the whole community of people living with disabilities. It instills great fear to know that those that are meant to protect and serve communities have turned into a lynch mob. In discussions on social media, some people have posited that Nathaniel’s disability should not be the focal point; society should just be outraged about the killing of an innocent boy. In my opinion, the disability is very much a part of the narrative. It is well documented that people with developmental disabilities are disproportionately susceptible to acts of violence. This has been attributed partly to their incapacity to protect themselves and obtain assistance within the justice system.

The killing of Nathaniel has shown that parents whose children have special needs and relevant organisations have their work cut out for them. A lot of advocacy is needed to ensure that the vulnerability of people with disabilities is eradicated, more so within the justice system. To some, people with disabilities might appear as if they should be banished to the periphery of life, but where they come from, they are loved. They have names, because they are real. They have their own seat at the dinner table. There is now an empty chair at Nathaniel’s house and his family is distraught.

This inexcusable incident has shown gaps in the policing system. How much training do law enforcement officers receive on handling people with disabilities? Or is that expecting a lot from people who appear to not even be conversant with the rules of engagement? I doubt that any amount of training can restrain a trigger happy and blood thirsty policeman.

A mother's 5-year journey with Down Syndrome

I have been contributing to a weekly disability column in the Observer on Sunday since October 2016, which explains why I have more disability stories than usual . What a journey it has been! I have learned quite a lot about disabilities, attitudes around them, and their impact on families. At some point I felt it was better to have a child with Down syndrome than one with autism. I believed people with Down syndrome were generally higher functioning that those with autism.  Now I stand corrected. Down syndrome also has its own challenges that aren't present in autism - persistent  health problems for instance. Although the newspaper column was just labour of love, it was gratifying. I shall be stopping my contribution end of April, but will continue posting on my blog when i come across stories. The lack of awareness on cognitive disabilities in society makes  me realise that there is still a lot that needs to be said. Below is a story I wrote to commemorate World Down Syndrome Awareness Day. I'm grateful to Buhle for sharing.  

People with Down Syndrome
Picture sourced from the internet

The date (3/21 – month and day) was specifically chosen to symbolize a third copy of the 21^st chromosome in people with Down syndrome. As with raising most children with disabilities, it is a great challenge to raise a child with Down syndrome. It is an arduous journey usually characterized by frequent health problems and dealing with stigmatization in society.

Buhle* came forward to share her story about how she found out that her child, Bongani*, had Down syndrome and her five-year journey caring for him.  Following a normal pregnancy and normal delivery, her baby developed jaundice. It worsened as he could neither open his eyes nor breastfeed anymore. After his admission in hospital, the pediatrician said the baby’s features made him suspect he had Down syndrome, and  went on to talk about chromosomes, which Buhle did not understand much and had to read up on Google afterwards. “His neck muscles were very weak and his head dangled loosely from his head and I was worried he would never be able to hold his head up or sit on his own,” she said.

Buhle was advised to take Bongani to a lab to test for Down syndrome. After two weeks, the rug was pulled from beneath her feet when results confirmed that Bongani indeed had Down syndrome. She was advised to take him for physiotherapy. Buhle said she did not understand how the therapy would help her son and wept with very strong doubts that anything would help him.

Bongani was also found to have a hole in his heart and had to be taken to a cardiologist. The cardiologist said the hole was not very huge and if he got to two years before it closed by itself, surgery would be needed. “I cried a lot and asked God why this was happening to me yet I had had my baby at 27. I had been aware that children with Down syndrome usually came to women who had babies when they were older,” said Buhle.  Thankfully, the hole closed. Bongani was susceptible to colds and pneumonia, but following the closing of the hole in his heart, the ailments also stopped. However, when it gets cold, he still comes down with a cold but antibiotics usually sort him out in no time. Every time he got a cold, he would need to be admitted and that happened countless times. The improvement took a heavy weight off Buhle and her husband’s shoulders.

Adversity usually results in one of two reactions – devout faith in God, believing that He will heal your child against all odds, or distancing yourself from Him, bitter that He allowed such a thing to happen on his watch. Buhle said her faith in God never waned because she had adequate support from her mother, who had walked an almost similar path caring for a daughter with cerebral palsy, and her very caring husband. “My mother prayed with me, accepted the situation as it was, and smothered the baby with love,” Buhle said. She added that Bongani’s paediatrician has been another pillar of strength in her life, together with the physiotherapists who have worked really hard to assist him.

Five years down the line, Bongani’s condition has greatly improved. He is now learning to walk and still goes for physiotherapy once a week. Although he cannot talk yet, Buhle says he can hear and understand everything. He is still being potty trained, and Buhle and her husband have trained him to have bowel movement in the morning in his potty, and then wear a diaper to avoid wetting himself.

Bongani’s doctor recommended that he enrolled at a crèche with typical children and that’s where the battle began. Three crèches turned him away as they said they were not equipped to deal with Down syndrome. “I was really hurt. No one chooses to be in this situation, but God gave me this gift. I somehow expected society to understand that and accept my baby too,” said Buhle. The toilet problems have turned out to be the reason why some pre-schools will not accept him. Although some of them take 6-month-old babies in diapers, they are not prepared to take care of a 5-year-old wearing diapers as well. Bongani eventually got accepted at a crèche based at church premises where he is very happy, which has also put smiles on his parents’ faces.   

Bongani’s brother, Sicelo, occasionally asks when Bongani is going to walk. Buhle said she simply told him that she was taking him for physiotherapy in order to make that happen. “I feel he is too young to grasp everything now. I will tell him everything when he is a bit grown up, but I think he has seen that our baby is different from others.” Bongani’s personality is starting to take shape. His mother says he is ever-smiling and is besotted with his father. He also loves to imitate everything his 9-year-old brother does and even has his own favourite cartoon series, Tom and Jerry. Buhle said all she wishes for her son is to be an intelligent big man, able to do everything on his own rather than be dependent on his parents or other people. “My biggest fear is that society does not know much about Down syndrome. I am scared that my son will be stigmatized and that will deal his self-esteem a big blow. I want to be an ambassador to inform society that people with Down syndrome are also equal human beings despite their condition, and they must be accepted and treated like everybody else,” said Buhle.

Many parents of children born with cognitive disabilities, especially of a genetic nature, are usually wary of having more children. Buhle is however undeterred. “I want a baby girl next so that she can play with her big brother. Of course, I am afraid of history repeating itself, but my trust in God is stronger,” she said.