The dicy role of reporting on disabilities

One day while hanging out with my friends, one of them told a ridiculous joke. The other went, “Lol you’re such a retard!” I told her that wasn’t a word to be used lightly or to be poked fun at because it is an insulting way to refer to people with mental, physical, and emotional disabilities. It is especially used offensively on those with intellectual disabilities. The same goes for idiot, imbecile, and moron. They are not good words at all regardless of the context in which they are being used. When I called out my friend on that, she just said, “Lol you take life too seriously! It’s just a word!” Words aren’t just words. They are powerful; no wonder why we have the adage, “The pen is mightier than the sword.” The tongue is too. Words have the power to heal or rip people’s hearts to shreds thus need to be chosen carefully.

Language use if a big factor that works to sideline or include other people. When it insults people with disabilities, it is termed ableist language. Ableist language is any word that causes intentional or unintentional harm or insult to a person with a disability, either of the body or the mind. People usually mean no offence when they say the derogatory words. They just flow freely and some have just become part of everyday speech. Still that does not make it right to say them. The same way people feel about racism, xenophobia, and religious intolerance is the same way people with disabilities feel about ableist language; it is the same way everyone should feel about it.

The word disabled itself is loaded with negative connotations if used thoughtlessly.  Think of someone saying, “Please disable the Wi-Fi.” In this context it would mean deactivate it, put it out of action, make it not work. Once people hear dis-ability, then they are ready to dismiss, disregard, and even discard the individual with the disability. These undertones are what make the term people with disabilities more preferable to disabled people. The former is known as people-first language while the latter is identity-first language. Although most people prefer people-first language, there are some that prefer identity-first language.  Those that are pro-people-first language say it avoids defining a person in term of his or her disability while the other group considers their disabilities to be inseparable parts of who they are.

The discrepancy in how people with disabilities prefer to be described poses a challenge for journalists and other communications people in some instances. In other instances, however, journalists use downright unacceptable terms. In such cases it is usually due to pure ignorance of what’s appropriate, rather than a deliberate intention to offend. Some offensive terms were actually used, some of them still are, in legal and medical contexts, but are not supposed to be thrown around in the dissemination of news and in general conversation. The medical and legal terms ought to be changed too. I have seen news articles describing deaf people as deaf and dumb, where dumb is meant to mean non-verbal. Dumb or mute are not acceptable to the Deaf community anymore. Dumb, in particular, is also used casually to mean foolish. It is also not considered right to talk about “normal people” in reference to those that do not have disabilities. When you classify them as normal, then what would be the opposite? There would be a group that you are classifying as abnormal, and that is not appropriate. It is more suitable to refer to a specific disability an individual has instead of just generalizing and describing them as disabled or abnormal. As for those without disabilities, activists say the term typical is more welcome, and the opposite would be atypical. One might roll their eyes and say it’s just semantics, but it really is not. There is always a better way of saying something.

On the subject of mentioning disabilities in news articles, disability advocates emphasise that disabilities should only be mentioned if they are relevant to the story. For instance, sometime last year a man who had albinism was murdered and headlines were screaming with “Albino murdered”. While there are some unfortunate events when people with albinism are killed for their body parts around the continent, this particular man had no missing body parts and there was no proof that his albinism had anything to do with his murder. In the end, emphasis seems to be on the albinism rather than the fact that a man had been killed. There have also been instances when there are reports of people with disabilities committing crimes. Some reporters will be very keen to mention the disability, even though it has no bearing on the case.

Regarding cognitive disabilities, sometimes there are reports about children suffering from autism or Down syndrome. “Suffering” gives the impression that these children are in distress or are writhing in agony, which is hardly the case. If anyone is in distress where autism is concerned, it would be the parent not the child who has it. Others in the community will also refer to such children or individuals as sick, and that’s also a poor choice. Some are just tactless, but most are just at a loss of the appropriate thing to say. This is where the media should come in to inform the community on the right thing to say, not perpetuate discrimination. When my son’s autism rears its ugly head in public, I’ve seen people struggling for the right way to ask what’s up with him. I can see them tiptoe on eggshells asking any of the questions: “What’s wrong with him, does he have ‘issues’, is he different, does he have a condition?” Thankfully, I do not mind responding and explaining autism as many people don’t know about it until they meet someone who has it. 

Be Autism Aware in 2017

Happy New Year to you all. Here’s hoping everyone had a restful festive season filled with love and joy. I am looking forward to another year of highlighting issues affecting individuals with autism and their families.  There are still many people who don’t know what autism is, and that is unfortunate seeing it’s a condition affecting quite a sizeable population in the Kingdom of Swaziland. Hopefully as the year progresses, that number dwindles as well.  When people are informed about the condition, they won’t be compelled to judge harshly when they encounter affected individuals. Also, many parents are struggling with their children at home and not seeking intervention because they don’t even know their children have autism. Please take time to read up the condition. There are countless online resources; you never know when that information might come in handy. 

One day, Simphiwe*, whose son is autistic, was at a community meeting in Ngculwini when a woman called out to her, “Make wemntfwana longaphile engcondvweni!” (Hey mother of the mentally ill child!") Simphiwe said she was heartbroken by those words and did not understand why that woman had simply not asked for her name. That’s how bad things can get when you come across grossly insensitive and uninformed people.

It’s not just strangers that stick daggers into the hearts of parents with autistic children. Loved ones also do it. The festive season is one of the most awaited times of the year when families get together and be merry. For families affected by autism, it is usually a trying time.  It is hard to participate in family and social gatherings because sometimes autism comes with hyperactivity, sensory issues and poor social skills. If the music is too loud, or the crowd too big, the autistic child can have a meltdown or spend the day with his hands over his ears. If you are the parent of such a child, it is difficult to turn a blind eye to this and just have fun. You end up also having a distressful day either trying to quell the meltdown or make your child comfortable if he’s in distress. Given a choice of whether to spend the day in the company of family yet not partaking in any of the activities because you have to keep an eye on your child, and just staying at home where the child is used to his surroundings, most parents would choose the latter. You stay at home with your child, you don’t have to spend the day explaining his behaviour to anyone, and your child is calmer because he is in his own turf. It does get lonely, though. Sometimes staying away from functions can also be imposed on the family of the autistic child. People might never want to invite you again for fear that your child might break things or disturb the peace, be the “party pooper”, basically.

At family functions there will always be that aunt who will shout in front of everyone that if you spare the rod you spoil the child, but people need to understand that no amount of beating will control the negative behaviours that emanate from autism. It is a developmental problem, not a parenting one. A Mbabane mother to an autistic girl said even though she was naturally a sociable person, her child’s condition had transformed her into an antisocial person. “If I go to a family gathering and people are trying to converse with my daughter, how many people am I going to explain to that, no she can’t have a conversation?” Between managing your child’s behaviour and swallowing the lump on your throat caused by all stinging comments being fired in your direction, there is usually not enough time and energy to explain things.

Family gatherings are also the time when family members share snippets of how well their children are doing at school, what sports they are excelling at, and the clever things they say. Meanwhile, you might still be trying to toilet-train a 6-year-old or trying to teach an 8-year-old to say “mum” or wave properly. (Many children with autism take long to learn to use the toilet. An article on Autism Speaks website attributed this to the general developmental delay that many of them have, difficulty in breaking the long-established routine of wearing diapers, and communication challenges. Some children with autism also have delayed speech, with some finding their voices as late as 8 or 9 years of age or never speaking at all.)

Sitting in the middle of people exchanging progress reports about their typical children is bound to make the parent of an autistic child left out and feeling sorry for him/herself and their challenged offspring. The progress reports are not even the worst of it. Things start to get really ugly when people start to compare their children with your autistic one. I remember a time when my own son was about 4 years old and still had a vocabulary of about 15 words. A friend, whose son was less than 2 years old, dropped by and went on and on about the intelligent things her son was already saying and how very balanced he was for a little person his age. When she ran out of her stories, she ‘modestly’ said, “Oh listen to me going on about my clever child to a person whose son can’t say anything!”

Of course the festive season is gone, but there are still birthdays and other smaller functions during the year. Do invite folks with an autism child too. Ask them how best you can help to ensure both child and parents enjoy the event. Not all autistic children break things, but if you know the particular child you are inviting does break, rather move the breakables out of his reach than shun his family.  And don’t compare that child with your own.

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.
Head Teacher of Ekwetsembeni Special School, Thembi Dlamini said she was very grateful to Prince Majaha and Farai Foundation for their kindness and bringing smiles on the children’s faces. The school caters for children with different intellectual disabilities varying from Down Syndrome, cerebral palsy, autism, ADHD, among others. Dlamini said some of the children do not even have proper diagnoses, but the school still accepts them into their system. They are then assessed, placed into ungraded classes and taught according to their levels of functioning. A child might be found to be doing Grade 3 English, Grade 5 Mathematics and other subjects from different grades. There are some that end up being recommended for inclusive education and proper grading after proving they can do well in such an environment. At around 16 years of age, those children that cannot be mainstreamed start vocational training. They are taught gardening, washing cars, art and crafts, and other skills. Dlamini said even though the school gets the same funding that all government primary schools get, the school would appreciate donations so that they can be able to buy raw materials for their crafts and other things they need for vocational training. The funding does not cover that. 

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? 

Children with special educational needs should not be banished from regular schools

The story headlined “Build more special schools” in the Swazi Observer of November 21 was quite an upsetting read. A senator moved a motion in parliament to the effect that, with funds permitting, government should build more schools to cater for pupils with special needs, because “an ideal situation would be to separate pupils according to their needs to avoid lowering the standards just because teachers are trying to accommodate slow learners.”

He was also quoted as saying the inclusive nature of the country’s education system had a potential to compromise the quality of education in the country’s schools. No offence intended, but the education system in Swaziland can hardly be described as inclusive, especially when it comes to children with intellectual disabilities.  Whole families are moving from far and wide to chase a handful of schools that can accommodate their children in other areas. Children with special educational needs are commuting long distances for the very same reason.  Inclusive education means that all students, with or without disabilities, attend and are welcomed by their neighbourhood schools in age-appropriate, regular classes and are supported to learn, contribute and participate in all aspects of the life of the school. When there are still allegations that “slow-learners” impede the progress of other students, then it means there’s piece of the puzzle that’s still missing. With the right kind of support, there will be a way around accommodating all students without fear of those with learning disabilities disadvantaging anyone. That would be inclusive learning.  There is well-documented evidence that when typical learners and those with disabilities learn together, there are good results academically and socially. 

Susan Nyatanga, a trainee special needs teacher from University College in Denmark said suggesting exclusionary policies when research is showing that students actually mutually benefit from being in mainstream schools is not only retrogressive to societal development, but also promotes discrimination of the special needs learners. “Instead of arguing that they lower educational standards, why not test them according to their abilities? When teachers are trained properly, they are equipped with many methods through which they can assist all children according to their abilities. A progressive argument would be on how best to train the teachers to enable them to teach the children with special needs, or what can be done to equip schools to accommodate these children. As educationists, if we restrict their world instead of expanding it, we would have dismally failed,” she added.

Howard Gardner’s Theory of Multiple Intelligences argues that we should not have the same test for everyone. Children have different talents and should be tested according to those talents and their level of functioning.

Nyatanga said most special schools in Denmark were actually being gradually dissolved as the country moves towards integrated education. The whole world is moving towards that. The UNESCO World Conference on Special Needs Education, held in Salamanca, Spain in 1994 made very important provisions which Swaziland would do well to adopt. One of the recommendations reads, “…those with special educational needs must have access to regular schools which should accommodate them within a child-centred pedagogy capable of meeting these needs.” The conference called on governments worldwide “to adopt as a matter of law and policy the principle of inclusive education, enrolling all children in regular schools, unless there are compelling reasons for doing otherwise.” If Swaziland is moving towards First World status, separating children based on their educational needs should not even cross anyone’s mind. If we seclude them, what will do next? Build a little world for them to live because they are deemed slower than others?

Swaziland has its own success stories in inclusive education. Inclusion does not necessarily mean all learners will always be in the same classes. There can be a classroom for those with special educational needs, where their strengths are assessed. They then join other classes for subjects they are strong at. Enjabulweni School is doing it, with very good results. They have the Paiva Learning Centre where children with special educational needs are based, and those that are strong in certain subjects join the mainstream classes for those subjects. All children with or without learning difficulties participate in school plays, sports and all activities. Stepping Stones opened a class for autism this year and is also doing very well with inclusive learning, as you will read in next week’s instalment.

Schools are not all about academic achievements.  They are also places where children’s outlook of the world is cultivated. It is where they are taught to discriminate or embrace those that are different. What will be teaching typical children when we say those that don’t learn at the same pace as them should be isolated? The excluded children will be deprived of the opportunity to socialize; the only world they will know is that which comprises people with their challenges. Children learn from socialization. The world is bigger than whatever challenge the children might have. Inclusive education in regular classrooms minimises the likelihood of a child with disability becoming an adult segregated from broader society.

There could be some parents who would prefer special schools over mainstream, depending on the condition of their child or other factors. The research that I have done, however, indicates that many parents of children with learning difficulties would rather have them in mainstream school, with a separate class where they can learn at their own pace. They are just children at the end of the day, and their disabilities or conditions should not define them. They should all be treated like equal citizens, not a burden that should be eliminated from mainstream schools and be condemned to some other corner like lepers. The Salamanca Statement recommends that governments should promote parental partnerships so that parent representatives are involved in the design and implementation of programmes intended to enhance the education of their children. Parents should have a choice and a say over where to place children with special educational needs. Currently Swazi parents do not.

Published in Swazi Observer on Sunday

Education struggle is real for people with autism

Autism spectrum disorder (ASD) is a group of developmental disabilities that can cause significant social, communication and behavioral challenges, in varying degrees. It is life-long and is present from early childhood. Some of the red flags for autism are language delay, lack of eye contact if you call the child’s name or try to engage him/her, lack of social interaction, sensitivity to loud sounds, repetitive behaviour, and difficulty in handling routine changes, among a host of other symptoms. Although it is not clear how many people have autism in the kingdom, the fact is that there is a substantial number, substantial enough for relevant authorities to want to avail facilities targeted at improving their quality of life. 

In Swaziland there are many severe deficiencies in the world of individuals with autism and their families. These range from non-availability of medication sometimes, lack of a solid support system for parents, the stigma associated with the condition, and of primary concern, non-availability of ideal educational structures for children with autism.

I am very thankful to have conducted some interviews with some autism moms. Many are not willing to talk about their experiences with the condition. I do hope that as we continue discussing this condition, more people will come forward to share their stories, with hopes that when the powers that be read real stories from real people, the challenges surrounding autism in the country can be addressed. The general consensus in the autism community in Swaziland is that not enough is being done to foster inclusive education, especially in government schools. When people discuss educational inclusion, what immediately springs to mind are wheelchair ramps, braille, and equipment for the deaf. Those with intellectual difficulties are usually sidelined.

While most parents would have secured schools for their children several months before the beginning of the new academic year, those with autistic children will be tearing their hair out with absolutely no clue where to send their children. The choices are very limited, and are usually not ideal. Now, that is extremely sad because every child deserves an equal shot at life regardless of how they were created. Children with autism are not write-offs. They are quite capable of learning, but do so in a different way and at a different pace than typical children. We cannot preach acceptance or equal rights for people with disabilities when there are certain groups that aren’t being sufficiently catered for

A section of Mbabane

Parents of typical children have a wide array of school choices. When your child has autism and you are in Swaziland, you mostly have to settle for any school that will accept your child, even when, with a breaking heart, you can tell that your child is not really getting the help he needs.  A parent would sleep better knowing their child is getting the best care possible at school, and is not just getting tolerated or even being discriminated against.

This happened to Sakhile* of Mbabane when she enrolled her autistic daughter, Nomsa*, at a certain school. When she met the person who would be her child’s teacher, she was very upbeat and assured her that she knew how to deal with autistic children as she had also studied Psychology. Not long afterwards, Sakhile got a distressing text from the teacher, who said she couldn’t handle Nomsa anymore. She was hyperactive, would just walk out of class at will to just look around, and could not concentrate on one thing at a time. Sakhile took her to a local pediatrician so that she could get medication to help her settle down, but the doctor declined to do so. (The issue of medicating children with autism is a thorny one, and will be tackled in upcoming instalments).   The teacher said Nomsa had to come so school with an assistant from home as she could not cope on her own.  In her own words, “It would help a great deal and release some pressure off me.” Sakhile said there is someone she has a connection with, Nomsa behaves a little better.  She then decided to send her helper with the child, but the helper quickly quit her job because she did not want to accompany the child to school. She probably felt this was not what she signed up for.

Sakhile’s sentiment is that the teacher did not create a relationship with the child and wrote her off without even trying. Consequently she had to pull her child out of school for a few days to arrange for another assistant.  “The teacher’s complaints always implied that my child is a burden. When we first met her, she allowed the child to be and when we tried to control her, she would say, “No, leave her alone. Let her be herself!”  She said she did Psychology, but if you did psychology then you should know how hard your words would hit a person and you would choose your words carefully when you complain,” she said.

There are a number of private schools that are doing their best to equip themselves to include pupils with autism by providing the right amenities such as Occupational and Speech Therapy at the schools to avoid the hassle of children missing school, and their parents missing work on a regular basis to seek the treatments at hospitals. But what happens to those that cannot afford private schools? They do not get an equal chance at education and sadly just fall through the cracks. There are also quite a few preschools taking children with autism, but when they’re old enough to go to primary school, there are just not enough schools to accommodate them.

In the next instalment, we will discuss how the Enjabulweni Learning Centre came to be, and how it happens to be the dream school for many parents with autistic children.

Published in Swazi Observer on Sunday

*Names changed on request

How the Enjabulweni Learning Centre came to be

Over a decade ago, a family found itself in a predicament following the discovery that their son had a learning disability. Unfortunately, as he grew up, no-one had brought their attention to it and by the time they realised it because the pre-school that he went to just pushed him along.

When it was time for him to go to school, the Paivas realised that their son, who we will call Ben, was not really ready for that. They decided to investigate, and that was the beginning of their grueling journey to accord their child a chance to get an education like any other child.  “We spent a lot of our time to research to see how best we could help our son, which resulted in us being told by one of the people we went to see that with children like our son, the most important thing that you can give them is stability in their life and their home environment,” said Sonia Paiva, the child’s mother.  But they wanted their child to learn, and an advisor recommended that he be put in a school that would accommodate him, with children of his level of functioning, and at the same time let him go to meet the children in the mainstream.

“When we came back to Swaziland there was absolutely [no school] like that in both the government and private institutions.” The Paivas then approached Enjabulweni, and realised that the need for a special needs class was there but there were no facilities for that. They then came to an agreement with the school to build the Paiva Remedial Centre while the school provided the professionals. And that’s how what is known as the Learning Centre started.  That staunch determination by desperate parents has resulted into a huge blessing for children who would also have had nowhere to go.

Enjabulweni Head of School, Kathy Thompson said there has always been a huge demand for special needs education and a remedial class. The Learning Centre accommodates children with autism, Down syndrome, ADHD, dyslexia, the physically disabled, and those that just need a boost to settle in the mainstream. Owing to the fact that there aren’t many options in the country, there is a long waiting list for people hoping to secure a place for their children with learning disabilities. “We no longer put people on the waiting list, we are forced to turn them away,” said Thompson.

More than a decade since the Paivas’ struggle, there sadly hasn’t been much improvement. One parent facing a similar struggle is Setsabile* from Mvutjini. She is unemployed and her husband does not make enough to send their autistic 7-year-old son to a private school and cater for their other needs at home.

 “When my son was four years old, I took him to pre-school with hopes that when he mingled with mainstream kids, his speech and behaviour would improve but I was very disappointed when the teachers told me that they couldn’t handle him. He only lasted one term and one day I found him locked alone in a separate class and they said he’s causing chaos and disturbing the normal kids,” said Setsabile. After that she could not find placement anywhere else, and was forced to stay with him at home for two years until she found a place at a special school.

Setsabile is still keen to send her child to a mainstream school with a special needs class so that he can learn proper social skills from the typical children. Presently  she has to hire a taxi to pick him from a bus stop a kilometer away from home to the special school and back, to a school about 8 km away. She pays E1 700 per term in taxi fare. Although she is thankful that her child is in school, she is not entirely happy with the standards at the school. “The ministry of education must hire therapists so that our kids get speech and occupational therapy at school,” she said. Getting therapy at hospitals is challenging because of the expense of taxi fare to go there and managing the child’s behaviour in public transport.

The presence of resident therapists is one of Enjabulweni’s biggest strengths. Thompson said Enjabulweni was focused on inclusivity. “When a child improves, even for one lesson, we try to include them in the mainstream. Learning difficulties such as dyslexia, ADD, ADHD are barely residential and are good candidates for inclusivity,” she added.  This process, however, does not come cheap and Thompson highlighted that the children at the learning centre don’t have enough teaching assistants. She said the children needed to have much more therapy, but the Speech and Occupational Therapists at the school had a huge workload as they also work with children in the mainstream who might need their assistance. They also have to be paid medical rates, which is one of the challenging aspects of retaining their services in the school.

With regards to how other children in the school relate to those with intellectual disabilities, Thompson said, “We try to create a sense of family and children with special needs are included wherever possible in order to look for, and find their strengths. All these people can perform. Society has to give them the opportunity.” She said her school was pushing towards vocational opportunities in order to find a skill appropriate for their capability. The Learning Centre currently has an agricultural project they are running.

Inclusive education has been seen to help improve the condition of children with learning disabilities. Affected children will learn how to relate with others, while typical kids will grow up with “different” people among them, minimizing the possibility of them growing up to discriminate against those with disabilities. 

Published in Swazi Observer on Sunday

*Names changed on request