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.

The Harsh World of Autism Parenting

The story of Patricia Ripley, the Florida woman accused of killing her 9-year-old severely autistic son, Alejandro, is doing the rounds in the autism community around the globe. I am a part of that community, as my 14-year-old son is autistic. When I read that story, I had chills down my spine, wondering how things had gone so bad that Patricia allegedly shoved her son into a canal, not once, but twice until she accomplished her mission. Her husband is standing firmly by her, saying she is a good mother and a wonderful human being, who cannot have murdered her son. I will be following that story with keen interest, but as with many court stories, we might never really know the absolute truth. As I was reflecting on this story, Facebook just sent me a reminder to a 2010 post I wrote, the day I almost became another Patricia Ripley. On one particularly bad day, I posted the message on the screenshot on Facebook. 

Normally I never post intimate issues on social media, but I did on that day, and up to now I have no idea what had come over me.I was feeling very lost because Victor was extremely difficult, with endless meltdowns, probably caused by the inability to speak. I was terrified of going out of the house as there was no telling when his spectacular tantrums would surface. He would attack me -scratch and pull out my hair, or roll on the ground, sometimes on busy roads or in supermarkets. On many occasions, I deserted my groceries at the till and dashed out of supermarkets when his meltdowns started. This, no doubt, drew a lot of unwanted attention to ourselves, and with that a lot of unsolicited advice from those who felt my parenting skills were wanting. Neighbours from our apartment building constantly complained about his loud screams, and one even came to my door to tell me she would report me to the police for child abuse, why was my son always wailing like that, that wasn't what happy kids with good parents did! I was always on the verge of tears and always had a quick apology at the tip of my tongue. 

At that time, I had no support whatsoever, as I had just relocated to South Africa. I made efforts to tell loved ones that I was really not coping, some said there was absolutely nothing wrong with Victor, while others reminded me to be grateful God had blessed me with a child. "There are many out there who would give anything to have the child you're complaining about," they said. All I had were ugly scratch marks all over my hands and neck, some of them oozing pus because they were deep. My son was the only autistic person I knew, and I wallowed in self-pity and despair, seeing no hope for him and myself. I tried to find a crèche for him to go to, so I could have a few hours to myself for recovery. The first three I approached said they couldn’t take him in if he was non-verbal. Yes, they had baby classes, but my son was 4 and they didn’t accept kids that age who didn’t speak. 

The general practitioner who we consulted, thinking Victor just needed to be referred to a speech therapist, was the first person to mention autism before referring us to a specialist paediatrician. He said he was not qualified to make an autism diagnosis, but highly suspected it. He, however, felt qualified enough to tell me that because my son was autistic, he didn't even know I was his mom, and would never be able to learn. That proclamation sent me off the rails. I struggled to live with the fact that my son would always be screaming like this and attacking me like he was possessed. It strongly felt like the death sentence had been handed to me.

I remember telling someone that I was convinced I'd die at the hands of my son. He had the strongest punch, even though he was only four years old; what would happen when he was 14? And what chance did a person with the intellectual disability described by the doctor stand in this harsh world where people are judged by their academic, or other, accomplishments? I was in emotional and psychological quicksand. The paediatrician we had been referred to had placed us on a long waiting list, and while we waited, life continued. Badly. I would be taking care of my son during the day, and at night I'd stay awake crying and reflecting on my predicament. Eventually, I went back to the GP so that I could get assistance for my stress and insomnia. He wasn't there, and his partner attended to me. I explained everything I was going through, and he said, "So is this autism curable?" I immediately realised this doctor was of no use to me. All he did was give me sleeping tablets to take at night.

I remember the sense of calm that engulfed me when I got home and took out the sleeping tablets from my handbag. Now I’d be able to sleep. I could even sleep forever. With my son. If I slept and never woke up, what would become of him? Who would look be able to put up with his incessant meltdowns, when his own mom couldn’t? Would they feed him? We would go to sleep together. I thought of my parents and how they would be devastated by my decision, but I felt this was my problem. I was the one that knew where the shoe pinched most, and I was the only one that could solve that problem. I felt trapped. Then I wrote that post.  Some people laughed, some cracked jokes about that post, not knowing I had my weapon of self-destruction by my side. Others said I needed to pray, like I hadn’t tried and discovered the futility of doing so. The doctor had categorically stated autism was a lifelong condition, and that my son could never learn a thing in his life. How would prayer change that? At the age of 4, he had never said “mom” because he couldn’t speak. I felt I had been dealt a bad hand, and the sleeping tablets increasing looked like an attractive solution. To cut a long story short, immediately after my post went online, my aunt sent a fervent prayer to my inbox, even though she didn’t even know what was dragging me down. A high school friend I hadn’t spoken to in years also reached out, and went on to have several long conversations about what I was going through, and how she had also overcome some serious struggles. I flushed the sleeping tablets down the toilet. When I see suicidal posts on my timeline, I don't dismiss the authors as attention-seekers. Seeking attention for a big problem you have is not a bad thing. It beats quietly taking drastic measures, any day. 

I condemn what Patricia Ripley did to her son. (I also condemn that she lied that two black men had abducted Alejandro, but that's a discussion for another day.) She might have been able to walk away from the canal she drowned her son in, but will she ever walk away from the distressed cries of her dying son? I will never understand how a mom would choose such a horrible way to get rid of her son. I will never understand because I don’t know what made her snap. Alejandro was non-verbal and was still wearing diapers at 9. That cannot have been easy for Patricia. Other moms are running around going for soccer practice and having conversations with their kids of the same age, and all she had to do was change soiled nappies. What hope was there that one day he would be toilet-trained? If he lived to be 40, would his mom have continued changing his diapers? Keyboard warriors are baying for her blood. She should burn in hell. Whatever the circumstances, she had no right to play God. She could have sought help from social workers. The US has a stronger support system than Africa, so she should have known where to go for assistance. Easy to say when you’re hitting keys on your laptop, without an inkling of her daily struggles. I don’t know her journey with Alejandro, but I know what autism can do to a mum's psyche. Something must have snapped. I wish she hadn’t gone that route. I’m dreadfully sorry that Alejandro’s last minutes on earth were so horrific and lonely.

I shuddered and cried a little when the Facebook reminder popped up, a reminder of how at some point I also almost made a terrible judgment call. At 14, Victor is now a strapping young lad, and the aggression and meltdowns are a thing of the past. Now he talks like his life depends on it, probably making up for lost time. I always playfully threaten to sew his lips together to stop him from talking, but deep down, I’m grateful he can speak now. He has amazing manners – always says, "Thank you, mom, for the food," jumps to clear the table after meals and even sometimes does the dishes (which I redo when he’s not watching). After I’ve worked hard to clean the house, he comes to say, “High five, mom, good job cleaning the house!” I’m never short of compliments when he’s around. “Nice weave, mom. Nice blue dress, mom.” When I sneeze, he dashes with the speed of lightning to fetch tissue, even if I don't need it. As he grows, new challenges crop up. But I'm in a better frame of mind now, and will fight on.  Regardless of his condition, he has his place under the sun, and no-one, except God, should take that away from him.  I’m that mom teachers never forget. When Victor comes home with unexplained injuries, I go to the school to get explanations. When the school calls for parent-teacher meetings, I’m there like a bear. I've heard some dejected mums say, “What’s the point? There aren’t any new improvements to discuss.” But I will show up all the time. I take an avid interest in everything that concerns him. The doctor had it  all wrong.Victor can learn! He types, spells and reads well, and has spent the whole of lockdown teaching himself to write. And what strides he has made! I wish I had been able to meet Patricia Ripley before the tragedy. I'd have wanted to tell her it won't always be this bad. Hang on! There is no assurance she would have listened to me.

I don’t wear the autism mom tag like it’s a badge of honour. If anything, it’s the biggest heartbreak of my life. I’ve heard people say, “Oh, God gives special kids to special parents.” All I want to tell them is, “You know what, you could have just kept quiet.” As far as I’m concerned, that statement is a crock of bull. There’s nothing special about being an autism mom, except that tragedy befell us. What makes the condition tragic is the non-availability or inadequacy of resources to help our children, and the constant feeling that we are failing our children. Every mom wants to provide solutions to her children’s problems, but we can’t solve autism, regardless of how much we might pull out all the stops. It’s the story of many parents walking this journey, especially in Africa. But Alejandro’s story shows this is a universal problem. Being an autism parent is a cross some of us have to carry. For life. And we are human beings who sometimes buckle under pressure. As did Patricia Ripley. I don’t, in any way, condone the route she took, even though she believes her son is now in a better place. But I will not be standing with those baying for her blood and screaming, "Nail her on the cross.!" It’s one case where I’d recuse myself from if I were a judge.

Brownies & Downies - A good model to emulate

Some schools have already opened now and in the swing of things, while the rest will be opening this week. Shopping malls are still a hive of activity with last minute shopping for school requirements such a stationery and uniforms. Parents subject themselves to all the expenses because they see light at the end of the tunnel. They want their children to get everything they need, get good grades and make wise career choices. For children with intellectual disabilities, however, there is a lot of uncertainty regarding where to go after they are done with their high schools studies, sometimes even their primary education, if at all they make it to school to begin with. Not everyone with intellectual challenges has the capacity to enroll for high schools studies. On the other hand, there are many that qualify for high school and even tertiary, yet the educational system is not that accommodating. For the few that do manage to study, the employment market can be very hostile and they might still find themselves twiddling thumbs with no job opportunities.

Employers are usually scared, unwilling, or mistrustful to hire people with disabilities. Two people in Veghel, the Netherlands, came up with a brilliant idea to avail employment opportunities for people with intellectual disabilities. Teun Horck, a chef, and Thijs Swinkels, a special needs teacher, realised that not many people with disabilities were employed in the hospitality sector, and decided to change this. In 2010, they started Brownies & Downies in their home country and the concept soon spread to surrounding European countries. The franchise has since grown by close to 30 stores in the Netherlands. It has even come very close to our own shores – in Cape Town South Africa.

Brownies & Downies is a training centre, in the form of a coffee shop and lunchroom, for people with intellectual disabilities ranging from fetal alcohol syndrome, autism, Down syndrome, to other learning disabilities. Their website states that it is “a vessel to create change and acceptance in the South African culture. Special needs young adults are trained to be employable in the hospitality, service and retail sectors. The Cape Town outlet was started by Wendy Vermeulen, a young woman who initially came to South Africa from the Netherlands, and also noted the lack of employment opportunities for people with intellectual disabilities.

Parents whose children need training phone the shop or email Vermeulen, then meet her at for an assessment of their age and interests. They are then added to the waiting list for training. Schools also sometimes approach the shop for their learners. Brownies & Downies tries to find job placement for the trainees, but some of them come for the training while they are still studying. “So far we have placed 3 people into real jobs at spar. And hopefully we will place some more of young adults in the work field very soon,” said Vermeulen.

She said in the beginning some of the trainees were shy but after a while, their confidence grew. “It is really great to see the trainees opening up and enjoying their work in the coffee shop.”  Regarding how customers react to being waited on by people with intellectual disabilities, she said, “99% of the customers are fine, they absolutely love it. But you always have the odd one who is rude to them or things like that.”

The biggest challenge faced by the establishment, according to Vermeulen, is the lack of knowledge that people have about people with intellectual disabilities, adding that having the young adults working in the coffee shop was good sensitization that people with disabilities can actually do something, they can work; contrary to what some people think.

Going through social media, there appears to be very happy customers for Brownies and Downies, with one hash-tagging #findingabilityindisability. However, some people have misgivings with the name. Name notwithstanding, it is a powerful concept that is helping to change perceptions and put people with intellectual disabilities in circulation with broader society, while taking charge of their lives by being professionals.

I believe the Brownies and Downies concept is doable even here, and not just for the hospitality sector. It could be in mechanics, retail, crafts, fashion, anything. People with intellectual disabilities have their own interests and some of them are exceptionally gifted. Unfortunately in most cases they are not consulted about their own lives, or parents and teachers alike might not take time to observe their areas of interest. Decisions are made for them. Some parents would rather channel financial resources to their typical children who they feel stand a chance of getting employed. Atypical children also need that chance to do what they love and lead fulfilling lives.

Medical and educational experts say early intervention for children with intellectual disabilities can work wonders to improve their condition. If you want such a child to go to work someday, you need to ensure they get the necessary medical care such as therapy, and attend school so that they can learn to take instruction and work within set routines with other people. But for them to go to school, the schools would need to be available and equipped to deal with their respective conditions.

Vermeulen said Brownies & Downies were thinking of expanding and maybe even franchising. Who knows, maybe someone with a big heart is reading this and we might have our own Brownies & Downies in Swaziland and change a few lives and perceptions. Regarding how employers usually shun employing people with disabilities, Wendy encouraged them to take a chance. “Just open your heart and see what amazing people they are. They are just like anybody else. A lot of times, in my experience, even better!” said Vermeulen. If you happen to be in Cape Town and in need of a bite, Brownies and Downies are located in Shop 7, 2 Long Street. 

International Day for People with Disabilities at Ekwetsembeni Special School

Today is International Day for People with Disabilities and I spent the better part of it at Ekwetsembeni Special School in Mbabane. An organisation called Farai Foundation (I hope to write about them soon), with the help of other sponsors, threw a Christmas party for the children at the school. I had planned to go to the function about a week ago, then something upset me and I decided I would spend the day moping. Then early this morning the managing editor of the paper I contribute to called and asked me to come to the function. I wasn’t particularly dismayed about going because I had initially planned to go. I am glad I attended.

Being a mom to an autistic child, there are times when I feel autism is the absolute worst thing that ever happened to this planet. Attending the Ekwetsembeni Christmas party made me think; hmm autism is probably not the worst of conditions (I still wish I could wish it away regardless). I saw children with all manner of physical disabilities, some that I had never seen before. I don’t know if this is a sin, but I found myself with a lump in my throat and hot tears in my eyes asking, “Where was God when all this was happening?” Most of the children were evidently from disadvantaged backgrounds and it was quite sad to think about what their future looked like in country where people with disabilities are not fully supported. It strengthened my resolve to keep raising awareness on disabilities and the pushing for the need to support people with them so that they reach their optimal.

People with disabilities should only fail to get somewhere because of natural limitations that cannot be surpassed, never because society failed them by not creating an enabling environment. What I yearn for all people with disabilities is access to education and health care. The world is too rich for people with disabilities to go through life without those two essential needs. It only takes a bit of commitment from government, the corporate world and society in general to ensure that people with disabilities are able to lead a dignified life. Farai Foundation joined forces with many organisations and the day was a resounding success. It can be done – on an even bigger scale than one day events (not to belittle what Farai Foundation did, but to encourage people that we can go bigger and better). Imagine how the country, or the continent of Africa would be if everyone who could would financially adopt a child with a disability by offering to put him/her through school and providing all the necessities? People resent it when people with disabilities sit by roadsides asking for alms, but how do they not take to the streets if they are not educated?

Congratulations Farai Foundation for hosting a successful event. It was very heartwarming to see how happy the children were. However, I wish the playlist had been more carefully selected. Playing Nasty C's Juice Back and Hell Naw at a children's party was a quite in bad taste.
What have you done lately to assist someone with a disability? 

Epilepsy: The "annoying" child

Yesterday I visited a friend whose 10-year-old child has epilepsy. He (I’ll call him Percy) is such a sweet and bright child, who unfortunately has to tip toe through life to avoid triggers for his condition. He has had many epileptic attacks at school, which has affected his academic performance and his social life, judging from what he told me.

I was just making small talk and asked him if he was having fun at school. Here is how our conversation went:

Me:  So are you having fun at school

Percy:  Not so much.

Me: Why?

Percy: I don’t have many people that like to be my friends.

Me: Why?

Percy: They all think I’m annoying.

Me: Do you enjoy annoying people? What exactly do you do to annoy them?

Percy: I don’t know what I do to annoy them. I don’t want to annoy them, I want to make friends. Sometimes I make funny sounds to make them laugh, and they say I’m annoying. Then sometimes I keep quiet, and they still say I’m annoying. I think I have an annoying personality.

That conversation broke my heart. I am convinced that the other kids are just afraid or uncomfortable with his epileptic fits at school and they now avoid being around him.   There is so much that needs to be done to educate our children about disabilities and how they should handle themselves around people considered to be “different”. Now Percy goes through life thinking he has an annoying personality, yet his failure to make friends has nothing to do with his personality at all. He’s just a regular kid but happens to have epilepsy, which ranks highly among stigmatized conditions.

I remember when I grew up, there was a boy called Chemadota, who has since passed away. Loosely translated, his name meant “the one covered with ashes”. That wasn’t even his real name, but he acquired it because he was epileptic. He would fall on the ground and have serious fits and people were scared of him, even though they still found time to laugh at his condition. By the time the fits passed, he would be covered in dust from head to toe, hence the name Chemadota. The severity of his epilepsy resulted in him being developmentally challenged, which people found hilarious.  It did not help that he was from a very disadvantaged background and was always barefooted and in tattered clothes. He was taunted everywhere he went, but was just a harmless boy with epilepsy.

I remember people telling me that people with epilepsy would foam at the mouth during a fit, and if you came into contact with the saliva, you’d automatically catch the epilepsy too.  I also heard the ridiculous assertion that if you looked in the middle of the footprint of a person with epilepsy there would be the paw print of a dog in the middle. People alleged epilepsy was demonic and once you fell into the fire, it would be untreatable. I don’t know where people got all that, but the message was clear: We were to stay as far away as possible from Chemadota or anyone with epilepsy. All that happened more than 20 years ago. It’s painful to note that nothing much has really changed in terms of raising awareness for epilepsy and other disabilities. 
When I was pregnant with my 10-year-old, I used to interact with many people with disabilities. I was advised that whenever I saw a person with a disability I was to discreetly spit in my dress to avoid having a baby with a disability. I never followed that advice, and had a child with autism, but I know it had nothing to do with not spitting. You spit when you have nausea, when there's a bad smell around you and you're revolted. You don't spit because someone has a disability.
I was telling my friends that I wish schools would just have about 30 minutes per week to discuss disabilities, prepare children for them. There are so many disabilities that children need to know about. They are growing, they will be parents who will probably also have children with disabilities. They will want to know how to treat them and they will want them to be treated well out there in the big, bad world full of uninformed people.  My friend, Celi, who’s a staunch advocate for disability awareness said: “…it does not come naturally for kids to shun others. It is learned behaviour.” I totally agree. Discriminatory kids grow up to be discriminatory adults who will also raise their own discriminatory kids. We will never see the end of this is something drastic is not done. 

Appalling treatment of mentally ill people in Swaziland

A story published in last week’s Observer on Saturday about the appalling state of the National Psychiatric Centre was quite heartbreaking.  It appears people have just written off the patients at the hospital.

The story painted a bleak picture of patient-neglect as mentally ill people are living in very humiliating conditions where the hospital is flooding owing to poor drainage. It does not only rain but pours for these fellow members of our society, literally and figuratively. Not only do they have to live in less than ideal circumstances, they also have to contend with insensitive journalists who use derogatory terms to refer to mental illness. It now appears everybody is out to get them.

On January 22 2015, there was a headline in The Observer that referred to an alleged robber suspected to be mentally ill as a “nutcase”. More recently, on May 18, there was another story headlined “Stark raving lunaticson the loose in Siteki”. Now, that is a very insensitive way of referring to fellow citizens of the kingdom. The story published in May highlighted how there was an influx of mentally handicapped people in Siteki, with some of them accused of committing serious crimes. That is a huge concern that calls for prompt intervention and screaming headlines, but not those that are insulting to the mentally ill.

Following the offending headline, I spoke to Psychiatrist and Mental Health Specialist, Dr Violet Mwanjali, to get an understanding of the facts around mental illness. She defined mental illness as any illness that affects the mind, and there are many of them affecting thousands of people in the country. Schizophrenia, depression, bipolar,  autism, and eating, anxiety, obsessive-compulsive and post-traumatic stress disorders are examples.  

Dr Mwanjali called on the people of Swaziland to come together in managing mental illness so that it does not end up having adverse effects on society, such as crime, violence, broken families and suicides. It should never be forgotten that some mentally ill people are also caregivers, and failure to get treatment might result in them losing their jobs and failing to cater for their families, like paying school fees and buying food, for example.  Mental illness, very unfortunately, is one of the illnesses that suffer a lot of discrimination from the less informed. This discrimination, said Dr Mwanjali, is among the major impediments to treating mental illness.

It is worse when the discrimination is perpetuated by the media, because society usually takes what newspapers say as the gospel truth, and when headlines call mentally ill people “nutcases” and “stark raving lunatics”, some members of society will believe that it is acceptable to throw around such ugly names. 

 “Mentally ill people delay going to the hospital, even when they see the symptoms. Sometimes they are afraid to collect their medication because they are afraid that people will see them and laugh. They then end up with complications because they are afraid of the labels,” Dr Mwanjali said.

The state of affairs at the National Psychiatric Centre at the moment does not encourage anyone to go and seek treatment. Nobody wants to live in such a wretched fashion. Apart from drainage system malfunction, there is also overcrowding, which has seen some of the patients having to sleep on the wet floor as water seeps into their dormitories. Apart from the existing ailments they have, they might end up picking new ones as a result of the deplorable living conditions. If patients have to walk on human waste in an effort to take a bath, doesn’t it negate the whole idea of taking a bath in the first place?

Vision 2022 must certainly look like a castle in the air for patients at the Psychiatric Centre. In progressive countries a building like that would be condemned as it is not safe for human habitation, and those who ran discriminatory headlines would be censured.

We should never be seen to be taking advantage of those that cannot speak for themselves. We would never be that nasty to people with HIV, because they have the mental capacity to stand up and fight for themselves and a big stink, excuse the pun, would be raised by organisations that represent them. People with HIV and other ailments are also being hauled before the courts for committing crimes, but they are not profiled as is done with the mentally ill.

 Dr Mwanjali said the majority of mental illnesses, among them depression and suicide, could be totally treated if those affected consulted mental health professionals. Those illnesses that could not be treated could be managed, the same way ailments like diabetes and hypertension are. People with mental illness can lead normal, fulfilling lives if they get the correct help and take their medication as prescribed. They need moral support so that they do not feel that they have to deal with their condition all by themselves. Supporting them also involves accompanying them to the hospital as soon as signs of mental illness are noticed. Other family members also need to understand how the medication should be administered, just in case the patient is incapacitated to remember by himself.

What’s worrying now is that the conditions under which mentally ill people live might exacerbate feelings of desolation. I would feel despondent too if I had to be woken up at night to wipe away sewage water from the floor.

There is a saying that goes, “The greatest measure of society is in how it treats its vulnerable members.” What is happening at the Psychiatric Centre is shocking and deplorable. The patients there are real people, not shadows. They have aspirations to get better and get on with life like everybody else.  They are somebody’s mother, father, child, or aunt. They deserve to be treated with dignity. There are associations for the deaf, those with HIV, epilepsy and other conditions, but who stands for the mentally ill in Swaziland? Surely people can come together and forego a few luxuries to ensure that the ablution facilities at the Psychiatric Centre are fixed? The world is too rich to allow vulnerable citizens of the country to live like that. Hefty sums of money are being offered for the protection of the rhino, and we must believe there’s nothing for mentally ill human beings? It doesn’t make sense.  Let us be our brother’s keeper.

 Published in Sunday Observer

Related:
Discussion on high suicide rate in Swaziland

Innocent language that's actually quite painful

One day I came across a headline that irritated me a little. It read “Doctor says robber is a nutcase”.

What’s the first thing that comes to your mind after reading a headline like that? The first thing that came to my mind was anger, sadness, irritation. I was angry because the media is very instrumental in shaping perceptions, and when they stigmatize through their use of language, society might think it’s OK to act likewise. The media’s mandate is to educate, inform and entertain the populace, so what do people learn from such negative use of language? Do not mistake me, I have no mercy for robbers, but I hold sufferers of neurological or mental conditions near and dear to my heart and get very hot under the collar when people make fun of their conditions. These are conditions that affect families in a way anyone who knows nothing about them can even begin to imagine. Only someone who has never loved anyone with a mental condition can call someone living with it “a nutcase”.

People with psychological conditions aren’t nutcases. They are people who either have shattered dreams because of how their conditions have affected them, or are still living their dreams regardless of the conditions. They don’t need people who have total disregard of their plight and go on to call them names that try to exclude them from society.

Many a time I’ve had to bite my tongue to avoid biting people’s heads off when they make certain statements lightly, yet the statements are pregnant with meaning for people in certain circumstances. Statements like:

 “He was drooling like an idiot”,

“There she was, laughing like a brain damaged child”,

“He refused to talk to me and I thought, lol what a retard!”

These are examples of really bad use of language that’s probably worse than the f-word. My son is autistic and he drools because he has low muscle tone, which his therapists are working on rectifying. He’s certainly not an idiot. People who have suffered strokes, or have other medical afflictions can also drool.

I have seen a few brain-damaged children, and when they laugh, it’s the most beautiful music to their parents and caregivers because it’s one of the few indicators that the children are happy, as they have no other way of expressing their joy. This can’t be equated to diabolical laughing, or any laughter that sounds indecorous.

I have observed how some people call someone who is being nasty a retard. Retardation simply describes a situation where there’s developmental delay in a person, and it’s not remotely funny when people throw that word around. Retard is a derogatory term for the developmentally challenged. Those living with individuals with retarded growth or development have very difficult lives trying to make the best out of their loved one’s lives. It’s an insult to people who have any form of retarding condition to be likened to obnoxious people.

On the same day that I saw the headline, I was actually going to the newspaper that published it for a job interview. Somewhere along the way, one of the panelists asked what I would do to change the paper if I joined their team. I said I would start by doing away with the kind of headlines like the one I referred to above, because many of the paper’s readers are probably living with mental illnesses. It won’t sit well with them to be categorized as nutcases. By all means let’s be irate with robbers, but let’s not poke fun at medical conditions that people did not bring upon themselves. I just wonder what kind of doctor would go around granting interviews to journalists about the medical history of his patients, even if they are alleged robbers. What happened to doctor/patient confidentiality?

I pray that everyone who passes by this post will be more mindful of what they churn out of their mouths. Let’s all be sensitive to those around us and what they might be going through. It might not just be about mental or medical conditions. It might be about someone who just had heartbreak or has some form of turmoil in their life and you just eject something that sends them off the edge or worsens how they are feeling.

And by the way, the newspaper never got in touch with me after the interview. I hope it had nothing to do with what I said about the nasty little headline with big effect on people suffering from mental conditions.