Let’s raise a glass to a victory for disability rights in South Africa!
In this blog post, I will explain the situation concerning the Copyright Act and the Constitutional Court victory in simple terms, as I know that many aren’t aware that there even was a court case, what it was about, why it matters, and why the disabled community is happy about the judgement. It will probably be one of my shorter blog posts, but this is also a good exercise in conciseness for me. As my readers will know, I love to ramble, but I have just recently accepted a job as a writer at a company that develops learning material, and I was reminded that word limits are a thing, (I said, rambling)…
• Why are we Celebrating?: Last Wednesday (21 September), a judgement by South Africa’s constitutional court found the Copyright Act of 1978 unconstitutional for unfair discrimination towards people with print disabilities. This does not only apply to blind or visually impaired individuals, but also to people with other disabilities that impede them from reading printed material. These can include learning disabilities such as dyslexia, and disabilities effecting physical dexterity, amongst others.
• What was wrong with the Copyright Act?: Before this historic judgement, people with print disabilities would have had to secure permission from publishers and copyright holders to reproduce reading material in accessible formats, whether those be braille, audio, or electronic formats accessible with a screen reader or other technology relating to accessibility. This severely limited the variety of literary works to which a large demographic of South Africans had access. Not only is it a slow and cumbersome process, but it is something that people who are not print disabled would never even have to worry about after purchasing a printed book. Therefore, it constitutes unfair discrimination.
• How did the change come about?: BlindSA (an organisation of and for blind South Africans that advocates for their rights and provides various empowering services) along with SECTION 27 (a public interest law centre that focuses on equality and social justice related issues) took the case to the High Court of South Africa, which ruled in their favour. Following this, they took the matter to the Constitutional Court for confirmation of the finding that the existing Copyright Act was invalid. Again, they were victorious, and the Constitutional Court effectively ended what has been dubbed the “book famine”, by making a judgement that provides for the exception to copyright for people with print disabilities (and organisations such as libraries that cater to them) for which many in the disabled community have been advocating.
Now that I’ve answered the most basic “why”, “what” and “how” questions, with a bit of “who” sprinkled in, let’s take a closer look at the deeper “why” when it comes to the importance of all of this in relation to the South African Bill of Rights, specifically relating to the rights to equality, human dignity, basic and further education, freedom of expression, language and participation in the cultural life of one’s choice.
• Equality: It addresses and goes a long way towards rectifying the fact that disabled South Africans with print disabilities have (up until now) lacked legal access to thousands of literary works to which those without print disabilities have had access.
• Human dignity: It addresses the fact that it is an important part of human dignity to be able to engage with the wealth of ideas and knowledge out there that contributes towards personal advancement and well-being.
• Basic and further education: Access to educational material such as textbooks is already a challenge in South Africa (especially for children from disadvantaged communities) but it is even more of a struggle for children with print disabilities. In addition, those seeking higher education often do not have timely access to the articles, books and other educational material that they need. It stands to reason that an amended Copyright Act would have a massive impact on inclusive education.
• Freedom of expression, language and participation in the cultural life of one’s choice: To be able to express one’s self, one needs to learn expression (such as writing and language skills, as well as the ability to find information in order to form and voice opinions) from the expression of others. To learn how to write music, one needs to learn to read music. To experience freedom in terms of one’s language of choice, one needs to engage with material in that language in order to express one’s self, for the same reasons as I’ve just mentioned. To fully participate in the cultural life of one’s choice, one needs to learn about that cultural life. No, written material is not the only way to learn about or participate in cultural life, but it is bound to contribute significantly in terms of how much one is able to learn and participate in an in-depth fashion. So yes, amending the Copyright Act to be more inclusive will allow for this as well.
I would like to briefly address the question of whether amending the Copyright Act will endanger intellectual property (IP) rights. I will not do an in-depth analysis of this, but suffice it to say that such an amendment is not immediately turning all literary works into a free-for-all in which someone can simply claim to have a print disability, and then just distribute someone else’s work to all their friends for free. Of course, people may (and probably will) still do this, but people who are not print disabled could as easily borrow a book from a library, scan it and make a few hundred copies, and then distribute them, if they so pleased. Amendments to the Copyright Act to bring it in line with the constitution would merely mean that, for example, if you or your organisation were to purchase printed material, you would be allowed to take steps to convert it into an accessible format so that it could be accessed by people with print disabilities without first asking for permission from the copyright holder.
A further point that I would like to make is that an incredibly important result of the constitutional court judgement is that making material accessible will no longer open people with print disabilities up to criminal and civil liability, and rightfully so. Trying to get equal access to freedoms that are guaranteed in our constitution’s Bill of Rights is in no way criminal.
So what are the next steps? Well, the judgement compels parliament to finalise the Copyright Amendment Bill within the next 24 months, and in the mean time, there is a provision that permits blind and visually impaired persons to convert material into accessible formats immediately without permission. The hope is also that the government will finally ratify the Marrakesh Treaty.
The Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired or Otherwise Print Disabled essentially mandates countries to provide easier access to printed works through the use of accessible formats by amending their copyright laws to allow for this. It was originally ratified in Marrakesh, Morocco, (hence the name) in 2013, but South Africa did not sign the treaty, despite ongoing pressure on the government by disabled advocate groups. The recent constitutional court judgment has given people with print disabilities hope that this might still be in the cards.
As previously mentioned, this is a victory for disability rights in South Africa. It shows that disability advocacy and activism truly works, when approached strategically. However, it is not only a victory for disabled South Africans. It is generally a victory for all South Africans, because it once again proves why (as has often been said) we have one of the best constitutions in the world.
This week’s article takes a deep dive into something very closely related to body language, but that few people know anything about or understand: stimming. We will discuss what it is, why many disabled people engage in it, whether it is good or bad, and finally we will talk about applied behavioural analysis, a type of therapy which is used to minimise stimming behaviours in autistic children (and sometimes adults) and to make them behave in specific ways.
On a quick side note, I would like to point out that I heavily drew on the writings of Dr Arielle Silverman in this article, as well as information from several articles that I found online. Until I read Dr Silverman’s book, I wasn’t even aware that these behaviours were called stims, and I did quite a lot of research for the purposes of this article, as stims were something I didn’t ever give much thought.
So what is stimming? Stimming is a term used to describe a movement or behaviour that is meant to provide sensory stimulation. This can be anything from rocking one’s upper body, to pushing one’s eyes, to hand flapping, to rubbing or stroking specific types of objects. Other stims include hair pulling, rubbing or scratching the skin, walking on tiptoes or pacing, flicking or snapping fingers, bouncing, twirling, repeating specific words or phrases, blinking repetitively, swinging the head, staring at lights or rotating objects, or rearranging objects. Nondisabled society tends to have a very negative response to seeing disabled people stim.
Most of these kinds of stimming are probably most common in people on the autism spectrum, but people with other disabilities such as blindness also tend to stim. When it is a blind person stimming, the behaviours are sometimes referred to as blindisms.
When I was a little girl, I used to push at my eyes with my knuckles, or press them with my fingers. Due to how common this behaviour is in people who were born blind, it has been dubbed the “oculo-digital reflex”. Contrary to what people assumed, I did this not because it made me see sparks, or anything of the like. The best way I can describe it is that it felt comfortable and soothing, and I often did it unconsciously. To this day, I sometimes do it, but from a young age I was taught by my mother and my school teachers that I shouldn’t do it, so I have largely unlearned the habit. There was good reason behind them stopping me, in my opinion. They said it might damage the little sight that I have, and that it would cause my eyes to become sunken. This could already be seen in the eyes of many of my schoolmates. It is worth noting that it is something that happens gradually, and that it is also difficult to tell if eye poking causes sight loss or sunken eyes. Some eye diseases are degenerative, such as my own, and some cause changes in eye shape over time. Still, I am glad that I mostly stopped poking my eyes overall. I still stim though. I play with my fingers or nails (as you can see in this post’s featured image), especially when bored, excited or nervous. Sometimes I just do it unconsciously in conversation when I am totally relaxed though, and it doesn’t signify anything about my mood. I also have a little black cilicon cat wine glass marker that I carry with me everywhere. I put it on my glass, not to tell me which is my wine glass, but to play with. The texture is nice, and the cat reminds me of my own real black cat Riddle whom I hardly ever get to see anymore due to reasons I won’t go into here. I have other stims, but these are just two prominent examples.
Other behaviours noticeable in blind people I went to school with included rocking back and forth, swinging their heads, or chewing at their hair. These behaviours can also be seen in many people with autism. Unlike eye pushing, these behaviours are not harmful. They just look strange to sighted or neurotypical people.
The thing that most nondisabled people don’t understand though, is that it isn’t only disabled people who stim. Most nondisabled toddlers will jump, bounce, run and climb. These behaviours can be potentially dangerous if the toddler isn’t being supervised, but they are allowed and seen as normal. Some people tap or chew their pencils, bite their nails, play with their rings or bracelets, squeeze stress balls or play with small objects. Others twirl their hair around their fingers, jiggle their feet or legs, crack their joints or knuckles, and drum their fingers on surfaces.
Whilst some of these behaviours are criticised, they are still seen as completely normal, simply because they are very common behaviours that are engaged in by nondisabled people. Gesturing while talking, even if it’s over the phone, can also be considered to be a stim. However, it is merely seen as body language, a way in which people express themselves. You may recall from the previous article that I found it very strange when I was little. I just couldn’t understand why people felt the need to do so.
Is stimming good or bad? This is a complicated question. Stimming can be good, in that it provides needed sensory input, may release pent-up energy, may be physical expressions of people’s emotions, and may even lessen some types of unwanted sensory input. Autistic people use stimming as a form of comfort in order to manage anxiety.
However, some stimming (such as my eye pushing) can actually cause harm. Further examples include head banging, excessive scratching or rubbing at skin, hair pulling to the point where it falls or is yanked out (the psychological term for this is trichotillomania and is not always simply a stim), biting or punching, swallowing or sucking dangerous or poisonous items, and picking at sores or scabs.
Another situation in which stimming can be harmful is in cases where it forms part of someone’s obsessive-compulsive disorder (OCD), which is a disorder that involves someone fixating on an obsession which causes anxiety, and then engaging in a compulsive behaviour that is meant to reduce that anxiety, but just ends up feeding the obsession. For example, as part of my OCD, I very regularly wash my hands. I am over stimulated when my hands feel dirty or grimy, so I wash them to feel clean. This can get to the point where I wash my hands without them being dirty, because I just think they might be. This can lead to very dry and cracked skin, and in extreme cases, even bleeding. I have also been known to rearrange objects over and over, which takes a lot of time. Something else that I do that might be considered a stim, is to count grooves on objects, because I have an obsessive need to know the number of grooves. I count them, forget the number, and have to start all over again. Many people (such as one of my friends to whom I read this paragraph) might disagree with me that these count as stims. My friend’s logic is that stims are usually enjoyable to people, whereas OCD symptoms become highly frustrating to people who exhibit them. In my view, they count as stims though, because behaviours such as hand washing can initially provide much relief to someone with OCD, and are engaged in with the purpose of lowering anxiety levels.
In the cases mentioned above, addressing these behaviours is a positive thing, in my opinion. However, we need to ask ourselves if it is really necessary to fixate on stopping other stims that are not harmful to anyone. For example, rocking isn’t something that is harmful. It is just seen as negative, because it looks so strange to nondisabled people. Whilst I prefer not to rock, because rocking might make me appear unprofessional in a work setting, for example, others may not care about that, and might argue that society should adapt to the fact that different people have different physical mannerisms. Honestly, I think it should too. Society is exceedingly judgemental towards people who don’t fit the mould of what is considered “normal”.
Regardless of whether or not one sees stimming as good or bad, there are ways and means to address them. Firstly, it needs to be consensual. Forcing therapy on someone is never okay, unless that person is a serious danger to themselves or others. Secondly, it should never, ever be addressed through punishment, such as a parent slapping a child when they stim, or taking away their toys or other possessions. Most of the time, punishment doesn’t really work in addressing stims anyway. When I was younger, I personally asked for my hands to be lightly slapped by my mother when she would see me pushing my eyes, but that was my own choice, and the slaps never hurt.
Ways in which harmful or socially frowned-upon stims could be stopped or controlled in certain settings (if the stim is actually something that the individual wants to let go) could include finding an alternative way to stim which is harmless, subtle and socially acceptable. For example, an individual could discretely use a fidget object such as a stress ball. Wearing a reminder bracelet, or having a reminder word could also work. Blind children or adults who don’t necessarily know how their body language is being perceived could take acting or body language classes to learn about typical nonverbal communication. Rewards can also be used to motivate children to control or stop a certain stim, although it is worth noting that it might not be a sustainable solution. Also, as Dr Silverman points out, parents are not always present to make sure the child is not engaging in the specific behaviour. A child may be very aware of their parent’s gaze when they are expecting a reward, and thus be consciously trying not to stim. However, the child may unconsciously stim when their parents are not there, because they are not paying attention.
At this point, I would like to address a specific type of therapy that is the most prevalent for people with autism when trying to teach them to adapt “better” to society and the world around them. It is called applied behavioural analysis (ABA). Extensive research shows that this type of therapy is effective in instilling adaptive behaviours in autistic children and adults, but at worst, this type of therapy is actively cruel, even when used with the best intentions. This might not be easy for parents of neurodivergent children who believe in ABA to hear (because of course they don’t want to hurt their children) but it needs to be said.
There are many different variations of ABA. However, the therapy typically involves three steps:
An instruction called an SD: This can be a verbal instruction given in a slightly louder voice than one would normally use, or it can involve presenting the autistic child with a picture or toy with which to interact.
Response or prompt: This involves the child responding to the instruction, or the therapist giving a prompt if the child seems not to understand.
Reinforcement or correction: If the child follows the instruction or responds in a way that is considered to be appropriate, they are praised and rewarded immediately to reinforce the action. If they do not follow the instruction, or respond in the “wrong” way, they are corrected. This can range from being told “no” in a neutral voice and being instructively told or shown the appropriate response, to pausing and leaving out the “no” before the repeat instruction and being told or shown the appropriate response, to the very extreme (and highly problematic) correction in the form of a punishment such as an electric shock.
These days, ABA therapists have moved away from punishing autistic children when they don’t comply with instructions, and focus strongly on reward. However, punishment is not the only thing with which anti-ABA advocates take issue. The main critique is that the focus of ABA is to make autistic children appear less autistic, or to act in accordance with what society considers to be “normal”. This is as opposed to trying to determine why the autistic child is acting in the way that they are. Advocates in the autistic community believe that the focus should be on teaching skills, such as assisting an autistic child who is silent to start talking and engaging with schoolmates, or assisting an older person with autism to be more organised, instead of the focus being on normalisation. For this kind of approach, therapists would need to take guidance from adults with autism. Autistic people need to be seen as clients, not patients, and they need to have a say in the things they want to address. Therapy should not be about changing or concealing who a person is. It is also necessary to consider that the same types of therapy may not work for all autistic people, such as in a case where the autistic child may understand what is being instructed or requested, but may not be able to immediately plan a response.
Also, ABA methodology can be cruel regardless of whether or not there is punishment. ABA therapists often grab the hands of autistic children and fold them in their laps, or regularly touch them in other ways. Many autistic people have an extreme aversion to being touched, and nobody should ever simply just be touched without consent in the first place. ABA therapists are known to force people with autism to make eye contact, which is something that is very uncomfortable for them. Prolonged eye contact can actually be uncomfortable to many people who are not on the spectrum, and this goes for touch as well.
Most importantly, autistic people feel that ABA does not place importance on the emotions and needs of the individual. Instead, the behaviours are all that count. If a child appears to be tired, overstimulated, or upset, this is regularly just ignored in favour of continuing to push them to follow instructions. Often, autistic children will comply, simply to get it over with. This does not mean they are comfortable or happy. This simply means that they are being taught to suppress their needs, and that their feelings don’t matter. Attempts to communicate things that are not in line with behaviours being demanded by the therapist are mostly just ignored. When autistic people are forced to engage with certain environments such as busy supermarkets, their ability to tolerate discomfort is not an indication that they are suddenly functioning “better”. In the moment, they might not experience a melt-down, but it is just being postponed. ABA demands a child’s attention, but refuses to give attention back when the child is trying to communicate something.
Another thing that is vital to understand, is that ABA sessions are not simply a couple of hours a week. It is recommended that young children between the ages of two and five go through forty hours of therapy a week. Is it any wonder the children become tired and upset? They are being put through forty hours a week of essentially being told that it is good and right for them to suppress their emotions, and that their ways of soothing themselves are wrong. ABA does not account for the fact that children are not taught to stand up for themselves or to self-advocate. Instead they are taught to never disobey or disagree.
Finally, teaching these things to children can be very dangerous. 70% of people with autistic spectrum disorder (ASD) have experienced sexual abuse by the time that they have finished high school. It is very possible that this is partially a result of the fact that they were taught as children to never object, say no, or refuse to follow orders.
In conclusion, stimming is not simply an activity such as doodling when a person is bored. For many people, it is a self-soothing behaviour that reduces stress and regulates emotions. Many also feel that the stims are a form of communication, because often, facial expressions are misinterpreted. Although I have pointed out some harmful stims in this article, I genuinely hope that I have been able to communicate that this is a much more complicated issue than one might initially think when seeing someone engaging in a behaviour that is considered strange by society, and that it is necessary to be extremely cognisant when it comes to trying to stop or control these behaviours in both children and adults.