Still Disabled and Proud

Hello world! I’m still around. I’m just also arguably an overly ambitious silly person going through a premature midlife crisis at 30, and trying to balance a full-time job (yes it’s still the job as a writer in which I clearly still haven’t learned to be succinct), building a business on the side (no it’s not an MLM), and doing my first Masters degree (yes I do intend to do at least one more after this). Aside from still being around, I’m still proudly disabled, and I don’t intend to stop writing this blog as part of my disability advocacy efforts.

In this post, I’m going to go on a little bit more about why the word “disabled” is not a curse word. For my previous post on the topic, check out the post titled Disabled and Proud, without the “Still”. I will start with a discussion of person first versus identity first language, after which I’m going to embark on a bit of a semantic tangent about why the word “disable” is not the opposite of “able”. I’ll conclude with a bonus opinion on why “special needs” aren’t all that special.

So what do I mean by person first versus identity first? Person first language in relation to disability is exactly what it sounds like. It is when the person is mentioned before the disability, as in “person with a disability”, “person with a visual impairment” etc. Identity first language is when the disability is mentioned first, as in “disabled person”, “blind person” etc. Proponents of person first language argue that disabled people are people first, and are not defined by their disability. Proponents of identity first language argue that their disability is a core part of who they are, and often they identify as part of the disabled community.

There is no right or wrong answer in terms of which to use, but preferences differ according to who you ask. Although there have been some recent surveys that have shown that there is a general preference for identity first language in the disability community, I would like to emphasise again that we are not a homogenous group, so what I said about “depending on who you ask” is key here, in that it’s a good idea to ask the individual you intend to talk or write about. The general consensus, however, is that person first and identity first can be used interchangeably.

Personally, I’m also comfortable with person first and identity first being used interchangeably. I do have a slight preference for identity first though, although person first would in no way offend me. However, here are my reasons for mostly referring to myself as a disabled or blind person instead of a person with a disability or a person who is blind:

  • It just feels less clunky. It’s quicker and more succinct to say or write “disabled person” instead of “person with a disability”, (see, I care about being succinct sometimes) especially if you’re going to be saying or writing it a lot.
  • I’m not ashamed of it, so it doesn’t need to be an afterthought. Yes, I am a whole person, and my personality doesn’t revolve around my disability. I just happen to be blind. However, if I’m comfortable with being called a blonde woman instead of a person who has blonde hair, a Game of Thrones fan instead of a person who is a fan of Game of Thrones, or a cat lover instead of someone who likes cats a lot, then I’m fine with blind or disabled person.
  • It is part of my identity. Having been disabled all my life, it absolutely has played a role in the experiences that have made me who I am. My disability has taught me to be innovative and resilient. That’s positive. Societal discrimination and stigma has also probably partially contributed to my internalised desire to prove myself or to conceal certain emotions, and that’s not so positive. But the positive, the negative and the neutral are what make me a whole, authentic person.
  • I consider myself to be part of an international disabled community. This is a community of disabled people who stand in solidarity with one another, take control of the narrative surrounding disability, advocate for disability rights, and sometimes even take collective action to engage in disability politics. This community claims the term “disabled”, and we identify as such.

Now, on to my mini semantic rant. Some might argue that “disabled” has a negative connotation, and this is why they prefer person first language. I’m not going to repeat my previous arguments about why being “disabled” is not an inherently bad thing. This time I’m going to talk about the actual word. The opposite (antonym) of “able” is not “disable”, and so if someone is disabled, it doesn’t mean they are not able. The opposite of “able” is actually “unable”, and they are both adjectives. On the other hand, “disable” is a verb, and the opposite of “disable” is “enable”.

The fact that “disable” and “enable” are verbs are the crux of my argument. If you think of a button on a website that is disabled, it means that some outside force caused the able button to no longer function as intended. If a machine such as an ATM is disabled, it means that it was designed to work, but that something caused it to break or malfunction. In the case of someone who is disabled, I argue that they are disabled by a society that is not inclusive. Inaccessible environments, for example, are the outside forces that cause people with specific bodies and needs not to be able to fully participate in society in the same ways that nondisabled people can. For a wheelchair user, a building with lifts and ramps is enabling, as is an accessibly designed website to a blind person. The wheelchair user is unable to walk, and the blind person is unable to see, but neither are unable to function. Society and environments (forces outside of the disabled person) are the real barriers to their full and equal participation,, hence disabling them.

Okay, so if I am disabled by a society that doesn’t take my diverse needs into consideration, why do I not use the term “special needs”? This could be a whole discussion on its own, but partly because accommodation is not inclusion. An accommodation at school, for example, would be if a blind person were to be assigned an assistant to sit in class with them and explain what the teacher is pointing out on the board. Inclusion would be if the teacher were to adjust their teaching methods to include all students, and no longer engage in practices such as just pointing at what they’re trying to draw attention to.

I’m not arguing that all accommodations should be thrown out the window, but I am arguing that the goal should be inclusion. For the focus to be on inclusion, we need to get rid of this idea that some people’s needs are “normal”, and other people’s needs are “special”. Nondisabled student X might need access to female hygiene products, whereas disabled student Y might not. This doesn’t make student X’s needs special, and just because student Y is disabled and has needs too doesn’t mean his needs are special either. They’re just needs. Everyone has needs.

So, in conclusion, I’m still in favour of referring to myself (and having others refer to me) as “disabled”, and I prefer this above anything else. I also still do acknowledge that opinions differ, and I don’t speak for all people with disabilities. But, as evidenced by me finally breaking my silence in 2023 to come and drop a couple of opinions here, I still have them, and I’m still unapologetically disabled and proud.

I Too Know Why the Caged Bird Sings

This post is dedicated to David Grant, a writer, poet, artist, father, and most wonderful friend who has spread his wings and embarked upon a journey to wherever we go after this life.

I attended an international seminar in Germany in August, and my experiences there triggered much rumination on the concept of freedom, and what it means to me.

Before I get into it, I apologise for not having posted for a long time, as well as for missing out on posting on yesterday’s International Day for Persons with Disabilities. All that I can say in my defence is that I started a full-time job in October, and that, in combination with my own personal side business somewhat taking off at the same time, Masters applications, and trying to manage my time with loved ones and my own energy levels gave me very little time for fitting in anything else. In addition, this article is a very personal one, and although it covers a topic which is definitely relevant to disability, the focus is on my specific lived experience. Perhaps that is why I found it so difficult to write, and then to actually post. I tend to take a more academic, or personally distant approach when I write about disability. Anyway, without further ado, here are my thoughts on the trip, and my feelings about freedom.

Let me just start by saying that my overall seminar experience was very positive. The organisers and facilitators were all really hospitable and helpful, I met and partied with some amazing people amongst the other seminar participants, I learned about some valuable skills, techniques, best practice principles and models related to leadership, and was privileged to go on some extremely educational and fun excursions. These included a visit to the Dachau concentration camp, a hike and dinner in the Alps, and a walk up to the Andechs Monastery brewery. I am a seasoned wine drinker, but I had never managed to finish a whole pint of beer before this trip. Silly, I know, but I was ridiculously proud of finally managing that.

I think the most important thing that came from my attendance was self-awareness. I learned a lot about who I am as a leader, how I interact with others, how I react to uncomfortable or scary situations, and what it takes for me to stretch myself beyond my comfort zone.

Now, here’s where my trip was most challenging on an emotional level, and this is where freedom (or rather the lack thereof) comes in.

After a week of attending the seminar, I was exhausted. One morning, I was sitting at the breakfast table (I’m not a breakfast person, but I love those continental style breakfasts with the cheeses and cold meats!) and a group of us were talking about whether or not we intended to take the train to Munich that day. It was going to be one of the few days we had off, you see. I intended to stay at the conference centre, because each day since we had arrived had been jam packed from dawn to late at night, and I needed a breather and some time to myself. One of the other participants at my table was adamant that he would be going to Munich, despite having partied hard until the early hours the previous night. His motivation was that he doesn’t often get the opportunity to travel, so whilst in Germany he should experience as much as humanly possible. He could sleep all he wanted once he went home. He then played a pop song that had inspired him. It was called Enjoy the Ride or something, and was basically about grabbing life with both hands. It started with the phrase “we were born ready, ready to be free…”

Thinking on this interaction during the course of that day, I started questioning myself. I had just been given this amazing opportunity (I had never been to Europe before, and many people will never have the chance to go there) but yet I was being ungrateful and choosing to sit in my room. I had considered courage and resilience to be two of my greatest strengths, but could it be that I just wasn’t that brave or resilient after all? Was I no longer a daring person? Was I holding myself back by denying myself opportunities, letting life pass me by and not grabbing with both hands what was offered to me?

Self-doubt aside (a positive self-regard is something I’m currently working on) I eventually decided that staying at the conference centre was still the best decision. I would rather do fewer things and enjoy them, instead of trying to cram everything in, feeling tired and anxious, and ending up disliking my experiences. I needed some time for self-care.

Still, I continued to question myself. Why was I one of the very few people without the energy to go to Munich? Why did I often opt out of the non-compulsory activities? Besides, being the only disabled person at the seminar, I wanted to be included and feel “part of” everyone else, but now I would be purposefully excluding myself. I already felt like the “odd duck”, what with needing help from other participants to move around the conference centre, get food, take the bus to town, and make posters and fill stuff in during the sessions. I wanted to be seen as one of the people that other participants wanted to work with, to sit with, to party with. I did not want to be seen as that person who needed taking care of, until I went into my room and everyone else could relax.

Despite what my impressions had been of developed countries before I went to Germany, I still felt like the “other” there. It really didn’t seem as if the environments were much more accessibly designed, and most of the seminar work was very visually focused. Pens and paper were required in almost all of the work that we did. It was strongly encouraged that all presentations should be visual, and even more so, nonelectronic. Energiser activities, icebreakers and games nights at the seminar almost all involved movements that were shown by someone standing in front of the group. There wasn’t really time to physically show me what movements I was supposed to make, so I either half-heartedly and awkwardly did what I thought I was supposed to do and tried to draw as little attention to myself as possible, or stood back and avoided participating altogether.

Again, I am not saying any of this to shame any individual or group (as I said, most people were lovely) and this is in no way a review of the seminar, which I found to be very valuable overall. I will give constructive feedback directly to the organisers. This article is about my own thoughts, emotions and realisations regarding my behaviours in certain types of environments, and the above is just for context.

Having voiced some of the doubts I had about my character to some friends at home, they pointed out that travelling with a disability can be extremely taxing, and takes much more energy than it does for nondisabled people. There are countless things that we have to keep at the back of our minds for consideration that others don’t have to worry about.

For example, one of the activities with which I required assistance was in walking down the road a short distance away from the conference centre to the bus stop, taking the bus into town, and purchasing things there. Whilst other participants had the option of taking a bicycle, this was obviously not an option for me. Not knowing the area, I needed someone to accompany me when I wanted to go to town for necessities such as toiletries, or luxuries such as wine. As I said, there was more than enough beer available at the conference centre, but wine was definitely still my drink of choice. I would ask other participants to go with me over lunch (one of the few gaps in which there would be time to do so. However, this required whomever was accompanying me to have to give up some of their down time and to run the risk of missing lunch. Often, someone might agree to go with me the previous day when I would ask in advance, and then not actually feel like it on the day. I obviously couldn’t be annoyed at them for this, as they were giving up their own time to assist me if they didn’t need anything from town.

Sensing a little resentment from one or two people from whom I requested help, I started finding it more difficult to ask. I didn’t want to inconvenience people, and (as I’m sure is the case for many disabled people) I was terrified of being a burden. Therefore, I started strategically planning whom I would ask for assistance, trying to limit the number of times I would ask a specific individual, or at least to alternate and space it so that if I had asked one person for assistance today, I would avoid asking that same person for anything over the next few days. I would also feel quite a lot of shame for asking at all if I wanted to go to town for only luxuries, wondering if I would be judged for wanting to only buy wine, for example. I realise that this was silly, as everyone else could go to town for whatever they wanted, whenever they wanted, and nobody would judge them for what they chose to purchase with their own money.

I didn’t only have to worry about how to source my luxuries, however. One evening I ran out of toilet paper, and there wasn’t anyone at the reception desk anymore past 19:00.                        I requested that a participant walk with me to one of the conference centre’s other bathrooms so that I could grab a roll (this was before I had the opportunity to explore with my cane and properly learn where everything was on my own) but she said that she was too tired. She ended up giving me a hand full from her bathroom, and I had to ration it until the next day. Again, my point here is not that I was angry with the participant for not walking with me (the conference centre was very big, it was a long way to the bathroom, and it wasn’t her responsibility) but I realised then the value of not having to worry about how often you go to the bathroom in case you run out of toilet paper. These are things that nondisabled people probably never have to even think about. They would have been able to go to one of the other bathrooms on their own, without depending on someone else, so failing to have checked their toilet paper supply before the people at reception were off duty would not have been an issue.

After considering all of this in relation to what my friends said about travelling with a disability, I started feeling better about my choices regarding down time. In a way, I was just setting healthy boundaries for myself, and by ensuring that I made time to manage my own anxieties, I was also ensuring that I would enjoy the activities in which I did end up participating, as I said earlier. If that meant that people would make judgements about me, then so be it.

I have come to the conclusion that I try way too hard to prove myself to others, and to a greater extent, to myself. This is definitely related to my disability, as it has been subconsciously instilled in me by society from a very young age that people will not see my value, and that it is on me to show my value-add (or at least how I will not be a liability) in everything I do. I have always been aware that this was the case in situations involving potential or current employment, but I think it hit home when I was in an environment that involved social interaction with new people who are not already established parts of my close friendship group. This is probably also why I have always had trouble with teamwork.

So how does all of this relate to freedom? Well, on the most basic level, I came to the realisation that I hardly ever have the freedom to decide things without considering the social perceptions that will result from those decisions. I couldn’t even decide whether or not to go to Munich without judging myself, and questioning my entire character. On a deeper level, it relates to another thought that I had during that breakfast conversation that included listening to the song about being born ready to be free and enjoying the ride. Nondisabled people often don’t recognise that they are privileged when it comes to their freedom. To them, choosing to be free is simple. If there’s an opportunity that costs them very little, there’s absolutely no reason they shouldn’t take it. For me, opportunities can hold costs that they don’t hold for others. It can be difficult to enjoy the ride if you’re not entirely sure how you’re going to find the bus.

The experiences that I’ve described in this article are only a few examples of how for some, freedom isn’t a choice. I was beating myself up for not taking advantage of all of the opportunities that were presented to me through this larger opportunity (the opportunity of attending this seminar in Germany) and I was beating myself up for feeling anxious and unhappy at times, because I perceived it as ungrateful. But here’s the thing: When one has freedom, one doesn’t have to spend energy thinking about and planning around the lack thereof, and can focus on the opportunities and the many things one could choose to do.

This reminded me of one of my favourite poems by Maya Angelou, called Caged Bird. It describes the opposing experiences of two birds. One is free, and can fly anywhere it wants, and its thoughts are full of everything it could do if it so pleases. It doesn’t think of freedom. It just “dares to claim the sky.” The caged bird (with its clipped wings and tied feet) isn’t thinking of “the trade winds soft through the sighing trees”, or “the fat worms waiting on a dawn bright lawn”. It doesn’t know these things. It can hardly see through the bars of its cage, its frustration and its anger, and all it thinks about is freedom, which is why it sings.

Angelou wrote this as a metaphor for the experience of oppression as a black person in America, versus the privilege and entitlement of the unoppressed. However, I believe that the metaphor of the caged bird can be extended or interpreted to apply to any marginalised group, including people with disabilities trying to navigate social and physical environments which are not built with them in mind.

I’m not entirely sure what the moral is of this story. I suppose that, for me, it just allows me to understand some of the ways in which I react a little better. It also highlights the dichotomy between what one person perceives as freedom, versus how I see it. Most might think that the opportunity to have all these different experiences abroad is freedom, and yes, I was absolutely privileged to be able to do that. But to me, the grater experience of freedom is in the autonomy that I have at home. I am not reliant on the time, preferences or kindness of others when I need groceries. I can just order them for delivery. I have networks of people that I trust, and friends with whom I never worry about being a burden. They are my people, and they depend on me for things too. I can operate my own coffee machine when I want espresso, and don’t have to ask for assistance with inaccessibly designed vending machines. I know my environment, so I can walk to a friend’s place, Uber or walk with my guide dog to a restaurant, or go to the pool in my apartment complex when I please. This is not necessarily because everything at home is so much more accessibly designed. It’s just because of familiarity, and because this is where I have already built a network. I have learned a lot about operating from outside my comfort zone in Germany, and I’m absolutely glad that I went and that I pushed myself, but that comfort zone certainly is appreciated. A comfort zone is not an inherently bad thing. Sometimes, I am less caged inside of it than I am on the outside.

Finally, I once again want to acknowledge that expressing anger and frustration is a normal response to feelings of confinement. No, I’m not angry and frustrated all the time. Far from it. And when I am angry and frustrated, it isn’t always aimed at any specific person. It’s just that, like the caged bird that sings “for things unknown but longed for still”, I address exclusion, marginalisation, and other uncomfortable topics because it is my way of singing of freedom.

South African Constitution won, Copywrong Act Zero!

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.

With All Due Respect

“You come across as too angry.” “You’re making us look bad.” “Don’t be too negative when you talk to them.”

These are phrases that I’m quite used to as a disabled person. Until very recently, I went through life believing that I represent all other disabled people, so I need to present well and “behave myself” lest I put people with disabilities in a negative light. I believed that I should always maintain decorum and never lose my temper, lest I be considered “one of those” grumpy disabled people. I believed I should be moderate in my approach when I am unhappy about something, because nobody would listen to me otherwise. If I want to be treated with respect, I must be everyone’s friend, and I must “ask nicely”. I still believe in adopting a moderate approach, and in treating people with the respect with which I want to be treated. However, I don’t buy into that idea of being the “model disabled person” anymore.

Respectability politics is essentially the notion that people in marginalised groups should conform to certain mainstream behaviours and standards of appearance to be respected, taken seriously, or even thought of in a positive light. You might have heard of it pertaining to race, gender and sexual orientation, but it is incredibly prevalent in the disability space, and is even espoused by many disabled people. As mentioned, I used to espouse it in certain ways myself.

Especially when I was still at school (which was a school for the blind), it was hammered into my head that, when out in public, I need to be a respectable blind person, or else I would be putting my whole school, as well as all blind people in a negative light. I should always be immaculately groomed, so that people wouldn’t think that blind people can’t take care of their appearances. I should always be upbeat, positive and inspirational in how I speak, or else people might think I’m self-pitying and bitter. In general, I should never, never make nondisabled people feel uncomfortable, and in fact, I should appear as nondisabled as humanly possible. This is especially the case at fund-raising events, because talking about issues (unless it is done to trigger feelings of pity or guilt) doesn’t bring in funds. Inspiration does.

I remember being at an event once with many other blind people, and I was absolutely dying of embarrassment because some of them had had a bit much to drink, and because they were being loud. “What will the nondisabled people think of blind people now?” I asked myself. “Can’t these idiots see that they’re ruining the attempts of the rest of us who are trying to change perceptions of disabled people?” I wonder why I didn’t consider the many events to which I had been where the nondisabled people had been inebriated, or had been loud? They didn’t carry the reputation of anyone besides themselves on their backs, yet, we as disabled people are expected to do so.

In another example, I was very embarrassed and almost apologetic when someone mentioned to me that they had approached a blind person in a shopping mall, and he rudely swore at them and walked away. Heaven forbid that this person might think that we’re all that discourteous. Well yes of course, this blind person in particular had acted like an absolute ass, but why did I feel responsible for his behaviour?

I recently read an ethnographic article written by an acquaintance of mine (Dr Heidi Lourens), in which she told the story of how she was treated with absolute disapproval by a shop assistant when she had been buying not only one, but get this, two bottles of wine! She was an adult, and far above legal drinking age, but society seemed to expect her to stay in her little box and conform to their idea of what a “proper” disabled person should be. Innocent and pure, and therefore very measured in their alcohol use, or whatever other constructs are tied to that specific image of purity. I can mention many other articles detailing similar experiences, but if I did, this post would go on forever.

At this point, I would like to tie my issues regarding the construct of “socially acceptable disabled people” to the concept of toxic positivity. I’m not against the idea of being positive, and I don’t consider myself to be a pessimist. I see the glass as both half full and half empty (light is a particle and a wave, right?) and it just is what it is. I call myself a hopeful skeptic, although I have recently recognised the need to place a bit more emphasis on the “hopeful” side and tone down the skepticism. This is because I recognise the benefits of positivity. Research has shown that it can hold benefits for mental health, achieving success in reaching one’s goals, and developing coping skills such as resilience. However, when positivity is seen as a cure-all and becomes an obsession, it can swing to the other side, and literally become too much of a good thing. In short, the point at which positivity becomes toxic is when it is inauthentic or fake.

Maintaining a facade of positivity in the face of all circumstances can silence the expression of negative emotions and cause avoidant behaviours towards issues that people might not have the courage to face. We all experience negative emotions from time to time, and whilst it is unpleasant, they need to be faced openly and dealt with too. Toxic positivity can prevent people from seeking help, and from discussing issues arising in relationships. It can cause feelings of guilt when someone is unable to maintain positive emotion, as if they just aren’t trying hard enough. Using platitudes such as “everything happens for a reason”, or almost any sentence beginning with “well at least”, minimises people’s very real and legitimate emotions of loss, grief or disappointment, and just isn’t helpful or supportive. In addition, when we live in denial of all negative feelings, they don’t just go away. They build up, and are bound to escape eventually in what could at worst end up being a complete mental breakdown. Finally, fake positivity can cause us to lose touch with reality.

So how does this relate to disability and respectability politics? Well, expecting disabled people to always put on a socially acceptable face, to never express anger, and to always just be “inspirational” promotes toxic positivity. Aside from suppressing and oppressing people with disabilities, it also draws attention away from important societal issues of discrimination and exclusion that must be addressed.

I attended a disability colloquium a few weeks ago. Disability and unemployment was the main point of focus. A government official or two spoke (amongst other people), and a few tone deaf statements were made that made it clear that they were not particularly well informed about international disability rhetoric. For example, one of these assertions was that an advantage of employing a wheelchair user is that they won’t feel the need to get up from their desks to stretch their legs, are comfortable in a chair, and would take fewer breaks from work as a result. Ridiculous, isn’t it? Sadly, I wasn’t especially surprised.

However, the chairperson of an important provincial organisation for people with disabilities was also a speaker, and he gave what I considered to be a very straight-forward and to the point talk on what it is that we as people with disabilities really require from the government when it comes to disability and employment. He pointed out some issues that are largely ignored or glossed over (such as inaccessible transportation to and from a workplace), and his was by far the talk that resonated with me most.

A university professor made some closing remarks at the end of the colloquium, and she essentially summarised everything that had been said up until that point. The only person’s talk that she did not summarise was the above mentioned talk by the chairperson of the provincial organisation. She just said that it wasn’t clear to her what he had been trying to say, and apologised for not commenting. She recapped every single honey-sweet proclamation from everybody else that spoke to how working together is mutually beneficial, and how there are amazing resources out there that we as disabled people should utilise. Her talk was longer than that of many of the participants in the colloquium, and yet it was the talk in which usually glossed over issues were brought up that she either didn’t pay attention to, or that she chose to ignore. I saw this as a good example of toxic positivity in someone’s mindset when it comes to disability.

So what lessons have I learned from my musings on respectability politics and toxic positivity?

  • That respectability politics and toxic positivity repress people’s authentic emotions, as well as their personalities. They reduce us to homogenous cardboard cut-outs, fail to acknowledge that people respond differently to their experiences, and fail to acknowledge that as disabled people we are diverse. Some of us are nice, and others are not, but we are all human.
  • That we are not responsible for the reputation of all disabled people as a group. We do not need to “behave”, in case some idiot generalises and attributes some negative quality to the disabled community, and inverting this, we do not need to apologise and take it upon ourselves when some other disabled person has acted in a way in which we wouldn’t have acted, or of which we disapprove. If a nondisabled individual makes an unfavourable generalisation about all people with disabilities based on what they see one disabled person do, then they are the ones at fault, and they are demonstrating prejudice and closed-mindedness.
  • That we don’t need to walk on eggshells to ensure that some poor fragile nondisabled person remains entirely comfortable and doesn’t get offended. By no means are nondisabled people “the enemy”, and we should absolutely treat them with respect, but true allies understand that our comfort also matters, our annoyance or anger is also valid when we are offended, and we have the right (as does everyone else) to expect respect.
  • That sometimes, being overly positive glosses over important issues which need to be faced head-on in order to resolve them. It’s okay to acknowledge that not everything is sunshine and rainbows, and that there is work to be done. It’s okay to be angry if we experience discrimination, exclusion, or prejudice, and if our rights are being violated. It’s okay to express frustration at a society that is not changing rapidly enough whilst we are getting the short end of the stick. It’s okay to actually experience and express feelings other than constant relentless optimism.

In the spirit of ending on a more hopeful (instead of a skeptical) note, I’ll say this: Reflecting on the above-mentioned learnings over time has caused me to grow in terms of boundary-setting, becoming less judgemental, discovering a sense of freedom, and coming closer towards owning my own rights.

Although I’ve always been bad at setting boundaries (something that I think I share with many disabled people who were brought up believing that they should ask for as little as possible and just patiently “take it with a smile”) I have taken an important step towards being a better boundary-setter after thinking about these things. This is because I realise that sometimes I can step out of my pretty little box and say “no, this is not okay” when a boundary is being crossed, without worrying about whom I might upset. I have learned to be a less judgemental person towards my fellow disabled people, because I realise that their behaviours are their own, and have nothing to do with me and how I am perceived. I have discovered a sense of freedom in the knowledge that I don’t have to conform to what society expects from me in order to protect other disabled people from being seen in a poor light. Finally, although I think it’s important to control my emotions, I don’t need to repress them to deserve consideration, because I have a right to be listened to and for my feelings to be respected, simply by virtue of being human.

See? This is an example of something positive coming from facing, and dealing with the topic of what might be perceived to be some negative societal constructs: Growth, and a little more self-respect.

All Depends…

Lilley sits playing at a musical keyboard, deep in concentration. She is wearing a short purple dress and her blonde hair is held up in a clip at the back. There is a black obsidian arrow hanging from a silver chain around her neck. In the background there is a blurred bokeh of Lilley's apartment.

Last Saturday night, a few of my friends and I embarked upon the task of going through a playlist of cheesy songs that one of the friends had compiled, debating the definition of “cheesy” at length, and deciding whether or not the songs on the list were indeed cheesy. The overwhelming consensus was that almost all of them were, despite the subjective nature of what does and doesn’t constitute nonedible cheese. Hey, I’ve always been open about our tendency to philosophise, but I’ve never pretended that all the topics that we choose are remotely important. Silliness is vastly underrated.

Anyway, the more I listened to these songs, the more I realised that they played perfectly into a categorisation system to which I have been giving much thought recently. The difference between, and to some extent, the maturity ranking of dependence, independence, and interdependence.

Think about some cheesy songs that you know. Many are love songs bemoaning some or other breakup, with lyrics such as “I can’t live without you”/ “please don’t leave me”/ “I need you by my side”. That communicates dependence. Then there are the angry or defiant “I will survive”/”I’m better off without you and can make it on my own”/”I don’t need anyone” types of songs. These theoretically signify independence. And then of course there are the “let’s stand together”/ “all you need is love”/”we’re all a connected big happy family” type of songs. Interdependence. I’m not (necessarily) using actual lyrics here, but I’m sure you catch my drift.

The goal of what we dubbed our “cheese and wine” evening was only to categorise songs as cheesy, or not cheesy. However, the reason that I started forming my subcategories of dependent/independent/interdependent is that I have recently been doing an online emotional intelligence course, in which one of the modules addressing interpersonal communication covered the dependence spectrum. Roughly at the same time, I came across a thread (once again on the disability community discussion Facebook group I’ve previously mentioned) where this exact thing was discussed in relation to disability.

In general (as I learned in my EQ course and in discussions about disability) dependence is not considered to be optimal. I agree. However, society tends to overvalue independence. The alternative is interdependence.

Let’s start with some general theory. Stephen Covey came up with what is referred to as a maturity continuum. We all start out as dependent on our parents or care-givers as infants or children (physically, emotionally, and in all other ways). As we get older, we progress to a state of independence, during which we learn to do things for ourselves (taking ownership and responsibility for our own physical health, thoughts and opinions, feelings, self-worth, finances, and other aspects of our lives.

According to Covey, the next step on the maturity continuum is when we reach the realisation that the best results can be achieved through collaboration, as opposed to when working alone. We have the confidence and capabilities that come with independence, but ask for help when needed, and take the feedback and perspectives of others into account. It also means accepting assistance, and simultaneously contributing towards the efforts or well-being of others with our own skills. As I’ve mentioned before, diverse workforces outperform homogenous workforces 2:1 and are more innovative, because more people bring more perspectives, skills and abilities to the table. This principle applies to most other aspects of life.

Here’s how Covey describes the continuum:

  • Dependence: When we are dependent, we operate from a “you” paradigm: “you must help me”, or “you have let me down”.
  • Independence: When we are independent, we operate from an “I” paradigm: “I can do this for myself”, or “I am responsible for my own success”.
  • Interdependence: When we are interdependent, we operate from a “we” paradigm: “we can combine our talents to achieve this goal”, or “we must decide whether to have X or Y for dinner, and who will do what”.

Eric Bernes’s theory of transactional analysis (TA) focuses on the content of people’s interactions with each other, and also holds some insights about how we operate dependently, independently and interdependently. According to TA, there are four different life positions that people can adopt, which influence how they interact. I could go into a lot more depth about what these positions signify in psychoanalysis, but for now we will only be focusing on the dependence/independence/interdependence levels.

  • I’m not OK — You’re OK: We adopt this life position when we are dependent. We see the other as capable, whilst we are not, and we need the other to help us whilst blaming them when they don’t, positioning ourselves as victims.
  • I’m not OK — You’re not OK: Often this position is also adopted when we are dependent or feeling powerless, but perceive that the person/people on whom we could depend aren’t able to help us either.
  • I’m OK — You’re not OK: This position could be adopted when we are independent, but not in a good way. It comes from a position of superiority, where we either look down on others in relation to ourselves, see them as incapable, or blame them for past failures, believing that we must stand alone in order to meet our needs.
  • I’m OK — You’re OK: This is seen as the optimal life position to which we should aspire, in which we are interdependent, trusting others and recognising each other’s worth and varying needs and abilities.

So why do these theories portray interdependence as higher than independence? Well, when completely independent, people can often struggle to ask for help, failing to recognise that others might have skills and knowledge that they don’t. There’s also the danger of becoming disconnected from the world around one’s self, and losing sight of the effects that one’s words and actions have on others. These effects can be disadvantageous not only to others, but to ourselves, as it prevents us from being able to form meaningful relationships. Too much independence can also result in loneliness and isolation. Many studies show that isolation can result in severe mental health conditions, ranging from depression to schizophrenic or dissociative disorders and dementia.

With the above in mind, why is it that society still undervalues interdependence then? This is because many people see interdependence as too close to dependence, or because the term is confused with co-dependence.

Interdependence does involve being dependent (to some extent) on others, but equating dependence and interdependence fails to acknowledge that interdependent people are still capable, give as well as take, and simply know when to admit that they might not be the absolute best at something.

Similarly, equating interdependence and co-dependence fails to draw an important distinction: Again, interdependence involves a healthy give and take, where as co-dependence is characterised by unhealthy attachments in which one or more people within a relationship are dependent on each other’s approval for self-worth, need to be needed to feel worthy, or even require the ability to control others (or to be controlled) so as to feel “okay”. Low boundaries also characterise co-dependence, whereas interdependence is based on mutual respect as well as self-respect.

When it comes to disability, independence is also generally held up as the yardstick to which one should aspire. That way, disabled people wouldn’t have to feel like “burdens” on society, or at least that’s the rhetoric surrounding it. In the thread on the Facebook group I mentioned, one disabled group member who prefers to remain anonymous commented that (in the US) this might be partly due to boot strap ideology. This is the belief that all people, despite their circumstances growing up (such as extreme poverty, or in this case, disability) can attain wealth and prosperity if they just work hard enough and “pull themselves up by their boot straps”. This idea is largely seen as outdated and false in mainstream society nowadays, but it still has a far reaching influence.

Whilst reading the thread on the Facebook group, I identified a few themes from the conversation that sum up my feelings on the matter of independence versus interdependence very well:

  • Independence doesn’t equal autonomy: Many members on the group pointed out that, in disability circles, independence is often conflated with autonomy and self-determination, but they are not the same thing. One can have autonomy and be self-determined whilst also being interdependent. Independence is being entirely free from the control or influence of others, whilst autonomy and self-determination (in my opinion) are more about having options open to you, and having the power to make choices for yourself. I may be interdependent, but I have autonomy in that I have the option of taking an Uber to meet my friends at a restaurant, asking for a lift, walking there if I know the way, or deciding to stay home because I want to. My autonomy lies in the fact that I have options. I am privileged enough to have the money to afford an Uber, and that I live in an area where Uber (or some other form of public transport) is available. I am skilled at making connections and friends, and the ones I have are the kinds of people who would not mind picking me up on their way somewhere if I asked. If I did not ask, I would actually consider myself to have less autonomy, because I would be limiting my options. In both cases, I wouldn’t be operating entirely independently, because someone else would be driving me where I need to go, but it is having the choice that makes me autonomous. If the restaurant is close, I can walk if I know the way. This is getting somewhere independently, but someone would have probably shown me the route, or walked with me once or twice before. If I decide to stay home, it isn’t because I have no way of getting to the restaurant. It would be because I chose to do so for whatever reasons.
  • True independence is a myth: Anyone who thinks they are entirely independent is kidding themselves, whether disabled or not. If you are earning your own money, you are still dependent on a company hiring you. Even if you own your own business, you are dependent on your internet service provider, or on a supply chain providing resources that were physically manufactured by others. You are dependent on roads built by others for these resources to be delivered. If your business grows, you are dependent on your employees actually pitching up for work, or on your outsourced accountant to do your books if book keeping isn’t your forte/if you don’t have time. If you order groceries for delivery, you are dependent on the people who developed whatever app you are using, you are dependent on the people picking out and packing your groceries, and you are dependent on the person collecting and delivering them. Although nondisabled people are often able to do their own shopping independently from delivery services, they often opt for delivery anyway. If not, they are dependent on cashiers, on the farmers who provided the produce they are buying, on the people who figured out the formula to make the face cream they use. Many people can cook, but they order takeout or go to restaurants where they are dependent on chefs. How many people can say they make everything they cook from scratch anyway? Do you make the dough and roll the pasta from scratch every time you make a pasta dish? Even though you might be a good gardener, do you and the residence of your apartment complex generally maintain the grounds all by yourselves? If you have a plumbing problem, do you call a plumber, or fix it yourself? I don’t know a single individual who is an amazing cook, great at cleaning, has super green fingers, is a wonderful handyman, is a financial wizard, home schools their children without any external help, knows exactly how to treat their own ailments and those of others, can defend themselves and their family if there’s an intruder, and can easily represent themselves in court. One person cannot do everything.
  • Interdependence is an adaptive trait: Interdependence is often sighted as much of how the human race survived and evolved in the first place. We learned to cooperate, and we started living in communities for protection and to share in other resources. The very act of childbearing requires two parties. I don’t mind being seen as an interdependent disabled person, because it doesn’t only mean that I need and use societal support. It also means that I am seen as someone with something to offer society. People rely on me for various things too.

So is independence bad? Not at all, but it’s all about balance. As Lisa Ferris (another member of the discussion on the Facebook group) said, learning how to do things independently has value “because it gives you more options in any given situation, but it should never mean you have to be 100% independent all the time…” She also pointed out that independence is not sustainable, whereas interdependence is.

Here’s another observation made by Lisa that I found very insightful: “Sometimes disabled people have been burned by ableist people so often, we become “independent” as a response to that trauma. We stop trusting people to treat us as equals, so we answer that by seeking independence.” This often occurs when disabled people are treated as if they are burdens on their friends, families and on society at large. It is interesting how disabled people are judged for making use of services that nondisabled people make use of all the time. An example given on the group involved ordering takeout. If a disabled person often orders in, it is assumed that they cannot cook, or are too lazy to learn. If a nondisabled person does this, there is no such assumption. But surely disabled people don’t order in because they just don’t feel like cooking, or heaven forbid, because they don’t enjoy cooking, right?

Another reason that some disabled people strive so hard for independence is because of internalised ableism. Yet another group member (Matt Langland) pointed out that it is not uncommon for disabled people to judge other disabled people for not being independent enough. I’ll admit, I have done this. My frustration comes from my tendency to project my own levels of, or desire for independence onto others. Some disabled people feel that other disabled people should do things exactly the way they do them, forgetting that there is no one single best way to get things done. As Matt put it, “People have different levels of independence which work for them depending on their skills and capabilities.” Disabled people who encourage others to be more independent do usually mean well. They just fail to realise that what works well for them might not work well for someone else. They don’t realise that their projection is sending the message that, as Matt said, anything “less” than what they themselves are doing means that the other person is not measuring up as a proper independent disabled person, and that they are dragging the names of all disabled people through the mud. If one South African or American’s actions do not reflect on the character of all South Africans or Americans though, why is it that we as disabled people insist on taking everyone else’s behaviours and society’s reactions to those behaviours upon ourselves?

Yes, there are disabled people who could be doing more to develop their capabilities. Although there are lazy members of the disabled community (as there are in every other community) this might not be the case for all disabled people who haven’t developed their skills. Many people just shy away from doing so for reasons such as a lack of confidence, or from a sense of learned helplessness. If someone was brought up in an environment where their parents did everything for them, they are less likely to know how to even go about developing capabilities. Even those of us who were encouraged to do things for ourselves as children will sometimes engage in avoidant behaviours out of a fear of failure. I know I do this sometimes.

I’ve had an interesting relationship with the dependence/independence/interdependence continuum over the years. I’m still trying to find that balance… That sweet spot. I still feel that I sometimes allow people to do too much for me that I could actually do for myself. For example, until recently, I didn’t feel like struggling with the inaccessibility of my bank app, so I allowed someone close to me to do payments on my behalf. I realised that this wasn’t serving me though, as I felt out of control of my finances. Therefore, I started figuring it out for myself, and with the help of a friend, I have managed to draw up a budget and am doing rather well. That’s where interdependence comes in. I allow this friend to help me become more independent. In turn, I help him with things that he isn’t as good at. For example, he has been struggling emotionally with various personal matters, and I’ve been using my skills to coach him through some very challenging situations.

In another example, I have a friend who is really great with computers. I suck at it. He helps me, and in turn I sometimes proof read letters or articles for him to advise him on grammar, or how to express something.

I hardly ever cook, but recently I have been trying to do so more, and to vary my recipes a little. The other night I made dinner for my close circle of friends, but I asked one of the friends to just keep an eye out to check if I’m doing things right. I didn’t allow the friend to do the cooking for me, but his watching made me feel more confident. In turn, he got dinner.

There are some things I am able to do for myself, but they are just a little harder, or more time consuming. So instead of just doing them myself, I might ask a sighted friend to help me. There’s nothing wrong with this. The problem would come in if I become complacent and allow myself to slip into the habit of letting things be done for me too often. It can also become a problem when people just take over and do things without me having asked for help, or without asking me if they can help. This too is about a balance though, because I must also sometimes accept that my friends might want to do something nice for me in the way that they would have done something nice for a nondisabled friend. When I say I’m going to make dinner, I don’t mind if someone wants to help by grating cheese, or chopping something, but if they end up doing the majority of the work, it makes me feel disempowered.

Then, there are skills that I just don’t feel the need to cultivate. I would rather spend my energy on something that I consider to be more worth my time. For example, some blind people teach themselves the skill of taking selfies. This is difficult for me, and I have friends who are actually very good at photography. The photograph that is the featured image for this post (as is the case for all the other featured images on my blog) was taken by a friend. It is of me sitting playing a keyboard, and no, I don’t know if I was playing a cheesy song or not. Either way, I am told that it’s a good photograph, and highlights my attractive physical qualities. I will never understand the perks of good lighting, angles and the like nearly as well as my sighted friends who are skilled at photography. Besides, I don’t like posing, because I photograph better when I’m being natural. Therefore, photographs are something that I am entirely unashamed of asking to be taken for me.

So, extremely long story short, there are two main points that I want to make: Firstly, I think that the crux of the matter is autonomy, and again, autonomy is not the same thing as independence. Someone once said that it’s not about how much you do for yourself, but that you are in control of what is done for you. Secondly, I’m strongly in favour of interdependence when done “right”. When I say “right”, I mean right for me, because everyone does interdependence in a different way. We are diverse creatures after all.

In conclusion, the South African concept of Ubuntu is a good way of understanding the value of interdependence. “Umuntu ngumuntu ngabantu” means that to be human is to recognise the humanity of others. More directly translated it means: “a person is a person because of people”. Disabled people are people, just like everyone else. They ask for help, just as you sometimes do, and many are more than willing and able to return the favour.

The Autonomy Disguise

A completely blacked out image.

RIP to all the casualties of society’s most recent atrocities towards disabled people.

Last week, I read an article published on 30 April by The Spectator, in which the matter was discussed of Canada indiscriminately allowing people with disabilities to be euthanised. For various reasons, many of these disabled people can simply not afford to keep on living (with or without dignity), which is the only reason that they opt for assisted suicide in the first place.

Fair warning to those who may feel that my style of advocacy is too angry. This is going to be an unapologetically angry article. I have no time for patiently entertaining the notion that there is more than one justifiable side to a story in which a population group is essentially being forced or coerced to die. This is nothing more than convenience for the nondisabled, being disguised as autonomy for the disabled.

Both the topics of assisted suicide and of poverty have been fresh in my mind recently, given that my previous two blog posts touched on euthanasia (the review of Me Before You in which a man chooses death above disability) and poverty (the difficulties faced by disabled people in finding employment). I happened to come across the article about the situation in Canada on a disability community Facebook group of which I am a member, and my jaw dropped.

It all started in 2015, when Canada’s ban on assisted suicide was lifted. The following year saw the enactment of legislation allowing euthanasia for people with a terminal illness, in the case where the person’s natural death is reasonably foreseeable. Five years later, Bill C-7 was enacted, dropping the “terminal illness” and “reasonably foreseeable” conditions altogether, and allowing anyone suffering from an illness or living with a disability which cannot be relieved under conditions that the individual considers acceptable to choose death. In addition, these individuals can die for free with funding from the government, due to the option of making use of ‘medical assistance in dying” or MAID.  What a perfect example to use in explaining to someone who does not understand the concept of a slippery slope!

The Canadian government claims that this law is all about prioritising the autonomy of disabled people. I, as well as Canadian disability rights groups that opposed the law and were ignored, believe otherwise. You see, autonomy is all about having a choice. The Canadians who have opted for assisted suicide so far felt that they had no other choice.

A woman in Ontario (who the media refers to as Sophia) diagnosed with a chronic condition called multiple chemical sensitivities (MCS) chose death after the failure of her desperate attempts to find affordable housing where she would not be exposed to chemical cleaners and cigarette smoke. She, her supporters, her friends and her doctors made multiple phone calls and wrote numerous letters over a time period of two years to officials on all levels of government, fruitlessly asking for assistance. Eight days before Sophia’s death, she filmed a video which was eventually shared with the media, in which she said: “The government sees me as expendable trash, a complainer, useless and a pain in the ass”. The president of the Environmental Health Association of Québec, who spoke to her on a daily basis after learning about the approval of her application for assisted suicide said: “It’s not that she didn’t want to live, she couldn’t live that way.” To me, that doesn’t sound like someone with autonomy.

An article published by Maclean’s magazine entitled “Dying for the right to live” tells a similar story of a woman with multiple disabilities (referred to as Susan) who chose a lethal injection above an existence in which she could not afford to eat. Food banks were not an option, due to dietary restrictions linked to her disabilities. She said: “An increase [in income support] is the only thing that could save my life. I have no other reason to want to apply for assisted suicide, other than I simply cannot afford to keep on living.” In the minutes before her death, Susan asked medical staff to make a call to the prime minister in which she would plead her case. His response would determine whether she would live or die. I do not know if she ever got through to the prime minister. I do know that she died.

Another article tells the story of a woman from VANCOUVER  (referred to as Madeline) who could no longer afford the medications and services that made her chronic pain bearable, and who was already deep in debt. She said that she chose assisted suicide, not because she wanted to die, but because her income was not enough to keep her under a bearable pain threshold.

Yet another article mentions a 35-year-old man who resorted to euthanasia. When his family visited him at his care home to say goodbye, they were horrified to find him in a room with urine and fecal matter on the floor and in his bed, as well as dark specks on the walls and in the sink. His brother believes that the deplorable conditions under which he was living had a massive impact on his decision to die, rather than to endure such indignity.

Not that assisted suicide should be pushed as the answer for people with mental health issues such as depression, but both Madeline and Susan said that they were not at all depressed. Susan said: “Every time I look out the window, I see joy, I feel happiness and I’m really a happy, contented and chill person.” A happy, contented and chill person is highly unlikely to want to die by choice, unless they feel that there is no other option. Both Sophia and Susan had another reason for choosing death though. Sophia wrote in an email to friends: “If my death helps to show the government that those of us with MCS will keep on having MAID if they don’t act soon, then I’m glad I could help someone else not have to suffer the way I have.” Susan expressed her disappointment in a society that undervalues the contributions of the disabled and doesn’t consider them worth financially supporting. She said: “I’ve received awards and accolades for my community work.” But, “I wasn’t earning a weekly pay, so I was considered useless to society.” Both of these women partly considered their deaths to be acts of protest. Personally, the only autonomy that I see in their decisions to die is exactly that: The message they are sending to the authorities that be. It is absolutely shameful that life is the price tag attached to the mere possibility that one just might be heard.

So how is it that the disabled find themselves in these positions in the first place? My bet would be that the Canadian government just vastly underprioritises the livelihoods of their disabled citizens. Palliative care is only available to a minority, with many disabled people finding themselves unable to access it. Of course, Covid created a massive public health crisis, and Canadians who receive the disability tax credit were extended the opportunity to apply for a one-time payment of 600 dollars. However, in only one example of how difficult it is for Canadians to be approved for this grant, a disabled student told the media that her doctor’s response to her request that he fill out the relevant form was as follows: “You’re not disabled enough…You have to be sitting in the corner drooling to be able to get this.”

To underline to what extent the Canadian government underprioritises disabled people, the original article I mentioned by the Spectator points out that university students received 5000 dollars in additional assistance from the government during Covid, whereas disabled people received only 600 dollars.

The most damning evidence, in my opinion, of the reasoning behind MAID having nothing to do with the autonomy of disabled people is in a report published by Canada’s Parliamentary Budget Officer about the cost saving that MAID would create. The report dispassionately states that Bill C-7 would result in additional net savings of 62 million dollars per annum, and although healthcare is expensive, assisted suicide only costs taxpayers 2,327 dollars per case. No wonder Sophia and Susan both made statements that indicated that society was making them feel like burdens on the system. The state would pay for them to remove themselves, but not to make it possible for them to stay alive.

To make matters worse than they already are, next year, people suffering from mental illness will also be eligible for euthanasia. This is another demographic that is disproportionately poor. There is also talk of allowing mature minors to have access to assisted suicide options. The problem that I see with this is that I do not believe that either group are necessarily able to rationally make such a decision. At what point did it become okay to essentially encourage teens to take their own lives? At what point did society decide that it is no longer important to acknowledge that mental illnesses such as depression have suicidal ideation as a symptom, and that it is no longer necessary to try one’s utmost to proverbially talk people who are in this dark place down from the ledge?

I have suffered from depression for a large portion of my life. It was worst when I was a teen. Now that I am in a much better space, I recognise that I was entirely irrational as a result of my mental illness. I am glad to be alive. Life holds so many opportunities. Death holds only one: rest. But I will have enough time for rest after I’ve experienced all there is to experience here first. It comes for us all eventually, and it is final. As a teen, I had less life experience, I was not in my “right mind”, and I was never more pro the idea of euthanasia. Now, I have lived many more years. They held many tears, but they also held moments of happiness and pleasure and sunshine that I would gladly cry each tear to pay for a thousand times over. They also held lessons. One of those lessons was that my life is immeasurably valuable.

Thinking of a very bright, high-achieving, popular and gorgeous friend of mine who committed suicide resulting from severe depression as a teenager, I can’t help but wonder if she wouldn’t feel the same way that I do now if she had gotten the help she needed. Make no mistake: she needed help, not government sanctioned enablement.

In South Africa, there is currently a court case underway in which a doctor and her patient are seeking to have euthanasia legalised. Given that it has already become apparent that the law in Canada is affecting the poor, it stands to reason that this will be the case in South Africa too. We are a developing country, and millions of people live in poverty. A massive proportion of these people are disabled, and healthcare, as well as government financial assistance for people with disabilities lags far behind what is available in developed countries such as Canada. Right now, the legal challenge only pertains to euthanasia for the terminally ill. However, as is clear in the Canadian case, this is a very slippery slope. How long until scores of poor people are lining up in front of hospitals to choose death, and what will our government decide is more important? The lives of citizens, or keeping the money that could have been used to save them?

I understand that arguments can be made for there being a place in society for allowing people the right to decide what happens to their own lives when they can undeniably prove that they are of sound mind. Yet, I cannot see how this could ever be a viable option in a society that is as unequal as ours, where so many don’t have access to the most basic of resources.

Finally, I believe that, regardless of the quality of life (which can always improve), each life has inherent worth. Like Linkin Park’s late great Chester Bennington sang in response to the question: “Who cares if one more light goes out in a sky of a million stars?” I too say: “Well I do.”

Les Inemployables: The Bottom Line Regarding Disability and Employment

Lilley sits at a table, typing on a laptop with an earphone in one ear. She is wearing a tailored business-like black dress and black high heals, her long blonde hair is worn up in a hair clip, and she is wearing light makeup. There is a black cat plushy sitting on top of her laptop screen, and Lilley's guide dog Teska's face is just poking out from underneath her chair.

If you think the gender pay gap is a tripping hazard, the disability pay gap will cause you to fall right into the ditch.

I have briefly touched on this topic in a previous article, but today we are going to take a closer look into disability and employment, or the lack thereof. This has unfortunately become rather relevant to me recently. I am very freshly unemployed and am now furiously job hunting again, and/or trying to build up a client base so as to start my own business. Since it is Worker’s Day in South Africa today, I thought that this would be a good time to post this.

In developed countries, 50% to 70% of disabled people of working age are unemployed. In developing countries, things are even worse, with 80% to 90% of disabled people lacking employment. In South Africa (my country) it is estimated that 90% of disabled people are unemployed, and this statistic approaches 100% in rural areas.

Why is this? Well, for starters, education for people with disabilities lags far behind, especially in developing countries. Countless disabled people never even make it through primary school, let alone all the way through a university degree. According to an article published by the Human Rights Watch in 2019, there is a lack of reliable enrolment data regarding the education of children with disabilities in South Africa, but it was estimated that 600,000 disabled children were not enrolled in school at the time. According to the same article, many disabled children who are in school are segregated, attending “special schools” in which they are not taught the same content as students in mainstream schools. When I was in high school, I remember being the only student in my class taking straight mathematics instead of maths literacy, and both straight maths and science are now no longer available as subject choices at all at my old school. This is a massive concern, as limiting subject choices makes it much less likely that students will end up with subjects that will allow them to qualify for university. Even if they do, they are limited in what they can study. Often, removing certain subject choices results from these schools’ extreme lack of funding from government. In addition, parents of disabled children interviewed by the Human Rights Watch expressed concerns that “special schools” do not teach disabled children the skills necessary to lead an independent life and to find employment.

In the cases in which disabled people attend university, getting all the way through a degree or postgraduate degree is also not easy for disabled people. This is the case worldwide, but I am going to write from a South African perspective and draw on my own experiences, and those of my friends and acquaintances. Most of them are blind, so please note that I am not covering each and every disabled person’s struggle here.

One’s university experiences as a blind person are often affected by what one chooses to study. I chose a degree that other blind people had studied before me at that university, so a precedent had been set and certain kinks had been ironed out. Still, there were issues. For example, we had what was called a braille office, where inaccessible material would be made accessible for us. This could include the scanning of books to make them available in formats that were accessible with a screen reader, actually printing some material in braille, and describing certain visual information in text. Very regularly, lecturers would forget to send the material to the braille office in time, because disabled students were just not prioritised. Once the material reached the braille office, it wasn’t immediately available either, as it had to still be converted. When this was the case,  it caused us to receive our study material later than other students did, giving us less time to study before tests. It also caused a pile-up of work when we had assignments to complete, because we did not have the option of starting with certain assignments earlier and getting them done long before the deadline in order to start on others.

In my Political Science Honours year (as was the case in many Honours years) there was a compulsory module on some inaccessible computer program that involved processing statistics. I had to wait a whole extra year to get my Honours degree, because I struggled through that module and didn’t make it. I was eventually allowed to take a different module in its place the following year as an exception.

Even attitudes within the disability office itself were problematic. Some (please note: not all) of the staff would react irritably to our requests, as if we were being ungrateful and they were doing us a favour. It didn’t seem to matter that assisting us was actually what they were being paid for.

Two of my closest friends were the first blind students to study Computer Science at my university. When they spoke to the disability unit, they were at first discouraged from following that study route. They managed to study Computer Science after all, due to having some very accommodating lecturers and tutors within the Computer Science department itself who figured out ways to teach them. No thanks to the disability unit, but to open-minded individuals. Of course, once these two friends of mine eventually got their Masters degrees, the disability unit did take credit, as if the credit didn’t belong to the actual disabled people who got that far.

Another friend of mine wanted to study Social Work. The Social Work department had some of the worst reasons for objecting. Apparently they still did a lot of record keeping and other tasks in physical writing instead of on a computer, which would not be accessible to my friend. She stood her ground though, was eventually accepted to study Social Work, and came out at the top of her class.

Other issues that were experienced by disabled people in my university included being refused accommodations if they had invisible disabilities. Additionally, people with learning disabilities who were granted extra time to complete tests sometimes found that the extra time granted was not sufficient. They would lose marks because they could not finish in the allotted time.

A friend of mine who is a wheelchair user could not access a lecture hall in a specific building, because the class was on the second floor and the building did not have lifts. This was something that “could apparently not be changed”, because that specific building was a historical landmark. As if preserving a building in exactly the way that it was first built for the sake of history is more important than actually serving the students that currently have to use it…

Please note that I generally had a very positive experience at university, despite the above-mentioned issues experienced. My university is by far not the only university where these challenges exist. I just don’t care to candy-coat reality.

The above was a discussion of the shortcomings of the education system and educational institutions, but it is important to understand some of the challenges related to becoming employment ready. Now, let’s dive into the challenges that disabled people face when they are actually job hunting.

As someone who sat around without much income for a good two years at least (aside from what I could scrape together through part-time tutoring and acting as someone’s research assistant), I cannot begin to describe to you how disempowering being an adult who is still dependent on their parents or their partner can be. It absolutely destroys one’s self-esteem. Sitting staring at the same four walls every day of my life also had a very negative impact on my overall mental health, and subsequently, on my relationships. It was discouraging and demotivating to spend ages creating profiles on fifty different job sites, and then applying for job after job and either hearing nothing at all, or simply being rejected with some flimsy excuse if a reason was even given in the first place. Some disabled people eventually end up having to move back in with their parents, because they run out of money for rent or anything else.

When I was job hunting, my options were limited as it is. Many advertised jobs (although they had nothing to do with the ability to drive) required one to have a driver’s license. I also couldn’t work somewhere too far away if I couldn’t find a lift. Ubering would have been simply too expensive. Attending interviews was already expensive. I once arrived for what I believed would be an interview, but all of the job candidates first had to complete some typing test on an inaccessible computer program. So after spending all that money and sitting around for an hour, I was just sent home again.

The first job that I eventually found after that was in a very low paying position. I was on probation for longer than other new employees, because I didn’t work as fast for various reasons related to the accessibility of the computer programs we were using, as well as the fact that I couldn’t quickly scan a page for the information I was looking for. The quality of my work in comparison to that of other employees was disregarded. Adding to this, it was in a different town, so I used to get lifts from a colleague. When that colleague was off from work for some reason, I would be forced to put in leave or to Uber to work. For context, one day only of Ubering to work and back cost more than 10% of my salary. The job was one that could absolutely be done remotely, but I was told that it would not be allowed. The line that my managers liked to throw at me was “we don’t allow other employees to work from home, and we know that you don’t want special treatment because of your disability”. I did not want special treatment. I just wanted reasonable accommodation laws to be respected, but I said nothing, because I didn’t want to be seen as difficult by my employers and lose my job. Reasonable accommodation is based on the principle that employers should make adjustments to the workplace environment, or to elements surrounding how a job is performed, to put disabled employees on an equal footing to nondisabled employees in terms of employment conditions. This could include elements such as being flexible around working hours, or as was my requirement, being flexible in terms of rules regarding the physical location of where the job was going to be done.

The rule about working from the office wasn’t even relevant though, because once when there were taxi strikes, my colleagues living in affected areas were allowed to work from home. Eventually I had to resign, because the colleague with whom I would ride to work moved out of my town and would no longer be able to give me lifts. Why did I not also move closer to work? Because I would have been a disabled woman all on my own, far from my friends in an entirely unfamiliar (and in the case of where my job was located, not very safe) environment, and my salary wasn’t worth that. After that, it took me another seven months to find employment.

So why is it so difficult for qualified disabled people to find jobs? I would argue that the primary reason for this is because of assumptions. Employers assume that a disabled job candidate must be less competent than their nondisabled counterparts. Otherwise, they assume that the disabled person might turn out to be a liability and cost the company money. Employers are concerned that they would have to invest in making the workplace environment more accessible by installing lifts and ramps, or purchasing software that would make working on a computer accessible. Another concern might be that disabled people with specific health conditions would take too much time off work for doctor’s visits and the like. On most occasions, the disabled job candidates aren’t even asked what kinds of accommodations they would require. Employers are also unlikely to directly tell a disabled person that they are being overlooked because of their disability, for fear of legal repercussions.

When companies do employ people with disabilities, it is often to tick boxes on some employment equity form. This results in the disabled employees being shoved into menial, low paying jobs that are frequently poorly matched with their qualification and skill levels. These jobs are not high responsibility jobs, so even if the disabled employee turns out to not be competent, the company doesn’t stand to lose much.

Here’s the thing that most employers do not understand though: Reasonable accommodation laws do not require organisations to do anything that will cause undue hardship. In fact, they can be beneficial to everybody. An example that occurred naturally is in the case of adjustments made to working conditions that allowed many people to work from home during Covid lockdowns. Many employers are now sticking to this mode of work, or making use of a hybrid approach whereby employees are required to come into the office only a certain number of days per week or month. Research has also shown that this has even increased the output of employees, as this cuts out time spent commuting, just to name one benefit.

 In addition, universal design (based on the principle that physical and electronic spaces should be designed in a way that make them accessible and usable to the widest range of people possible) is beneficial to more than just disabled people. I am not going to branch out into an in-depth discussion of universal design for the purposes of this article, but suffice it to say that research has shown that only a quarter of the people who benefit from accessibly designed environments and technology are disabled, and it generally positively effects an organisation’s bottom line.

Employing and accommodating people with disabilities holds other benefits. Research has shown that employees with disabilities tend to be highly reliable, taking fewer sick days or time off, and staying in jobs longer than other employees. This promotes lower staff turnover. Disabled employees have been shown to be equally productive to nondisabled employees, and they are also no more likely to sustain injuries at work than their nondisabled colleagues. Organisations that recruited disabled employees indicated that it was much more affordable than they initially thought it would be. Disabled people (because they have to work around barriers on a daily basis) tend to have very strong problem-solving skills and are innovative. Innovation is a highly prized skill in the workplace.

Finally, it has been shown that a diverse workforce outperforms a homogenous workforce 2:1. Diverse recruiting promotes teamwork, as the workforce will consist of people with diverse skills, ideas, and life experiences to draw from. Diversity also builds an organisation’s image, both from within, and in terms of perceptions about the company amongst customers.

On a quick sidenote before I conclude, it would be remiss of me not to mention that disabled people are frequently expected to offer their services for free, when it comes to acting as disability and/or accessibility consultants for organisations. Disabled people have highly specialised skills and knowledge that should not be undervalued, and anyone (regardless of their demographic group) should be paid for doing a job. Organisations should realise that making products and services accessible benefits them, and they are not doing disabled people a favour by investing in accessibility.

Progress has been slow, but things have recently been moving in the right direction. Remote work opportunities have drastically increased the pool of jobs that disabled people can apply for, and a focus on diversity and inclusion (DNI) culture within organisations has created a greater awareness of the benefits of employing disabled people. However, there is still a long way to go.

The “bottom line” is this: If you’re an employer, take the time to communicate with disabled job candidates about their skills and their needs before you write them off based on assumptions. You won’t be sorry. If you’re a disabled job seeker, hang in there, and remember that you have the right to be treated fairly without fearing to lose your potential or current job. You add value.

Me After Me Before You

In a park, Lilley sits at the very top of a multicoloured jungle gym consisting of metal poles in a geometric structure, as if looking down from a throne. She is wearing a black long sleeved top with a v-neckline and dark blue jeans. She is also wearing a long chain around her neck with a symbol of a three-headed dragon on the disc hanging off it. Some of her long blonde hair is over her left shoulder and the rest flows down her back.

There are few films addressing the topic of disability that have generated quite as much controversy as Me Before You, adapted from the Jojo Moyes book of the same name and starring Emilia Clarke and Sam Claflin in the lead roles.

I hadn’t watched it at the time, but I am one of those people who has a truckload of useless pop culture knowledge without actually having consumed the associated media, so I had opinions. I, like many others in the disability community, did not approve of the message of this film. However, after three of my girlfriends who had watched and loved the movie (one of whom is disabled) told me that I shouldn’t criticise something that I haven’t actually watched, I decided to give it a bash. I thought I could at least have fun mocking the cringe, and perhaps even turn it into a drinking game where the rules would involve drinking every time something ableist is said or portrayed. After a careful watch (I decided to save the drinking game for a second viewing during which I wouldn’t have to pay attention for the purposes of a review) I came to two conclusions: first, that the acting was enjoyable and the storyline wasn’t as terrible as I had initially thought (up to a point) and secondly, that I was completely right about the main message being plain wrong.

I will begin with a quick synopsis, so a massive spoiler alert is in order. Louisa “Lou” Clark gets a job as a care assistant to ex banker and adventurous sportsman Will Traynor, who became quadriplegic after being hit by a motorcycle. Will’s mother hopes that Lou’s bubbly disposition will cheer him up. Will is very bitter and jaded, and he is initially extremely rude and cold towards Lou. After some time and some conversations, Will warms up towards her and they become close. Lou learns that Will is worldly and cultured, which contrasts with her own simple life. Lou overhears an argument between Will’s parents in which it is revealed that Will intends to go to Switzerland for assisted suicide (where this is legal) after a six month period which he conceded to his parents. The reason for this is that Will is unable to accept life as someone with a disability, after all of the rich experiences that he had as a nondisabled man.

Lou decides to try to change his mind and to show him that life is still worth living in the remaining months, and takes him on a series of adventures including a luxurious trip. In this time period, Lou and her boyfriend break up, and she also attends Will’s ex-girlfriend’s wedding with him. They dance, with Lou sitting on Will’s lap in his wheelchair, and they fall in love.

However, the fun and games are cut short when Will reveals to Lou during their trip to Mauritius that he still intends to go through with the assisted suicide plan. He wants her to live a “full life”, and believes that a life with him would only be half a life. Lou is devastated and resigns, and refuses to see him until her father convinces her to visit him. She finds out he is already in Switzerland, so she follows him there to support him and to say goodbye. Jumping forward in time by a few weeks, Lou reads a letter whilst sitting in Will’s favourite café in Paris. Essentially, Will tells her in the letter that he has left her enough money to live her dreams, and that she shouldn’t think about him too often, but go forth and live life to the fullest.

Let’s start with the things I enjoyed. As I said, the acting was good, which is to be expected from such a stellar cast. Being a total fantasy nerd, I was excited to see Emilia Clarke (who played Daenerys Targaryen in Game of Thrones, one of my all-time favourite characters) portraying Louisa Clark, as well as Sam Claflin portraying Will Traynor (he played fan favourite character Finnick Odair in the Hunger Games franchise). He is yet another nondisabled actor portraying a disabled character, which is problematic in and of itself, but that’s a topic for another day. Of course there was also the amazing Charles Dance portraying Will’s father Steven (also starring in Game of Thrones as Tywin Lannister) and Matthew Lewis (who of course played Nevil Longbottom in the Harry Potter films) portraying Lou’s boyfriend Patrick.

There was also some pretty okay humour in the first three-quarters of the film which made me chuckle. I am not referring to when Will tries to make Lou uncomfortable when they first meet by making moaning and wheezing sounds that are stereotyped to be sounds made by most disabled people. This was supposed to make the audience laugh, but it fell flat for me.

Regardless, despite the tired “girl helps bitter disabled dude chill a bit and falls in love with him” trope, the first three-quarters of the film was not unbearable. It was actually quite enjoyable. But then, it all goes to hell in a handcart.

More on the last quarter of the film (the most problematic part) later, but first I would like to address the initial issues that I have with the story. Again, there’s a care assistant (which could be considered to be a position of power) interacting with someone who is portrayed as being able to do very little for himself. He is angry and jaded about becoming disabled. Okay, fair enough. Some people do go through extreme grief after having experienced such a loss, and this can be expressed through anger and bitterness. The issue is that so many films featuring disabled characters portray them this way though, and there are few where the disabled individual is actually okay with their disability, or is actively working to come to terms with it.

 There’s a scene where it is noticeable that the care assistant starts to fall in love with the disabled person as she is tending to him when he is sick. It is implied that the acts of seeing him vulnerable, being worried about him, and “taking care” of him are what unlock these loving feelings. It is completely possible that a care assistant might fall in love with a disabled person through seeing their vulnerabilities and caring for them. It is worth noting that the opposite of the traditional understanding of transference (in a case where a client falls in love with their therapist) can also occur, where a therapist or someone in a similar position might develop feelings for a person through seeing their most personal, vulnerable sides. However, I would argue that this can also be seen as too much of a trope. Instead, it might have been less problematic if the nondisabled character was portrayed as falling in love with the disabled character under neutral circumstances, or even as a result of learning something about a cool capability that the disabled person has.

I would not be properly covering the topic of tropes if I didn’t address the fact that Lou is an absolute “manic pixy dream girl.”. This is essentially a girl in film or television who is quirky, energetic, playful and childlike, high on life, and of course attractive, and shows the broody male hero what wonders the world holds and livens up his life. Lou, with her bumblebee striped tights and other wacky colourful clothing, as well as her relentless optimism, is a perfect example.

Now, on to the final quarter of the film. One of the strongest messages throughout the story is summed up in a sentence spoken by Will’s father: “Will needs to be allowed to feel like a man.” How do I even begin to explain the extreme problematic nature of this sentence? Firstly, “Will needs…”: Who gets to decide what Will needs? Apparently the nondisabled characters, because he wasn’t asked about his needs. “Will needs to be allowed…”: To be allowed? Who is giving him permission, and why does he need it? “…to feel like a man”: To feel like one? So he’s not a man? According to the characters in the film, including Will, he is not. He is the shadow of a man that once was. The whole film revolves around the fact that Will was so much more human before his accident. So much more of a man, which apparently one can no longer be when disabled.

This is further reflected in his conversation with Lou, in which he tells her that he still intends to go ahead with his assisted suicide plan. He says that he can’t have her tied to him, because other men could offer her so much more. He even implies that he can’t see her naked or interact sexually with her, completely ignoring the fact that quadriplegic people are often perfectly capable of having satisfying sex. Aside from perpetuating the idea that disabled people are asexual, the whole conversation perpetuates the idea that a life with a disabled partner could never be as fulfilling as a life with a nondisabled partner. I have written extensively on my issues with this idea before, pointing out that disabled partners offer as much to their relationships as their nondisabled counterparts. This film shows us a character who is clearly smart, cultured, highly attractive, Kind (eventually), and a multimillionaire to boot, and communicates to us that this is still not enough to offer a nondisabled partner.

On a side note, Will’s behaviours and decisions can be seen as sexist. He doesn’t care about Lou’s opinion, or what she wants. Lou wants to be with Will, but he decides on her behalf that a disabled partner is not enough. He is also constantly putting her simple lifestyle down, and telling her how she should be experiencing and doing so much more, despite the fact that she seems perfectly content with her life the way it is. This is just another man telling a woman what’s good for her.

As we already know, Lou fails in her attempts to convince Will that life is worthwhile. He goes to Switzerland anyway, and goes ahead with assisted suicide. Lou eventually comes around to his point of view, and the decision is sold to us as a disabled person taking ownership, displaying autonomy, and deciding for himself what he wants to do with his life, even if that decision is to end it. Here’s the problem. Depression caused by grieving a loss should not be pushed as a good reason to commit suicide. The world should not be receiving the message that disabled people should act as martyrs, conveniently removing themselves from society so as to no longer be a burden on their nondisabled families, friends and lovers. It is not “better dead than disabled”. Most people with disabilities would much rather be living than dead, thank you very much. Our lives are rich, and they are worth as much as any nondisabled life. They should not be written off.

You may be thinking: “But each disabled person is different, so shouldn’t Will have a right to his own opinion about his own life? There are people who feel the same as he does, after all, and they should be represented.” Yes, they should be represented, but the problem is that they are represented so very often in the media, and there is a massive imbalance. When last did you see a movie or show in which there was a disabled character who was just another character living life, or who’s story didn’t centre around their disability? Imagine if one of the characters in Friends or How I Met Your Mother was disabled, but their story was exactly the same, perhaps barring a few experiences of inaccessible environments or exclusion? I’m willing to bet my remaining eyesight that you probably haven’t seen such a show or film, and I would argue that before we see more sob stories about how awful a disabled person’s life is on screen, we should see more representations of disabled people whose disabilities are just one of their many characteristics.

When I decided to watch this film, I made up my mind to try to be open minded. Who knows. Maybe, through studying Will’s logic, I could come around to the idea that this was the best decision for this specific individual. Needless to say, this was not my conclusion. Will acknowledges that he “gets” why a disabled life could be fulfilling for some people, but as he says: “I can’t be the kind of man who just accepts this.” What kind of man is that? He seems to be implying that a weaker man could accept disability. However, in my opinion, the kind of man who could move through the grieving process, then go on to accept his disability and find different ways of living a rich life is the stronger man. Will, with his refusal to even try to understand this concept, and his refusal to properly accept the love of a woman who wants him not despite, but with his disability, is a coward.

My final criticism of the movie is it’s actual focus, because make no mistake, it isn’t really about Will at all. It is about Louisa, and how she was changed by meeting Will. Will was not truly changed by meeting her. He went ahead with his original plan anyway, despite her best attempts to make him change his mind. His views of what life with a disability could be, did not change. In contrast, after meeting Will, Lou became interested in culture and an adventurous life, and suddenly she had lots of money with which to “live life to the fullest”. In his final letter, Will says that Lou shouldn’t think of him too much. This pretty much clinches it. It was never about him. It was about the nondisabled character all along, and the disabled character was just a catalyst for her growth.

So, to summarise, me after watching Me Before You equals highly unimpressed, to say the least. Hollywood, please, for the love of popcorn, do better.

Stim and Response

Lilley sits smiling on a big dark grey beanbag chair, her hair loose and flowing. She is wearing a long turquoise Chinese style silk nightgown with flowing sleeves, patterned with pink flowers. She appears to be playing with her fingers or nails.

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:

  1. 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.
  2. Response or prompt: This involves the child responding to the instruction, or the therapist giving a prompt if the child seems not to understand.
  3. 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.

More than meets the eye: Disability and Body Language

Lilley on a swing at a local park. She is wearing a black long sleeved V-neck shirt and blue jeans. Her hair is flowing away from her face as she falls backwards, cascading in various directions. Her body language and facial expression communicate a sense of complete freedom and joy.

In the swimming pool, I notice that good ideas are born. My friends and I often become very philosophical while we swim, and we have now come to call the pool our “think tank”. The other day, we were discussing the topic of disability and body language, which I haven’t read much about, or actually read about at all over the years. Yet, there is so much to say about it!

When I was younger, I really didn’t understand body language at all. That’s no wonder, because I can’t actually see when people are communicating with their bodies. I just thought it was completely irrelevant to me. Later I learned that it has always had an effect on my life. For example, I remember being told by my mother from a very young age that I should look at people when I talk to them. This is something I had to practice. You see, I didn’t instinctually understand that I should do that. I would often talk to people whilst looking away, or even with my back turned to them. I was of the opinion that it didn’t matter where I was looking, because people could just hear my voice. Yet, for sighted people it really has a massive impact on not only their perception of whether I am showing them respect or not, but also on if they really listen to what I’m saying in the first place.

When I used to take part in singing competitions as a teenager, I learned that judges take more things into consideration than whether or not one has a nice voice. My vocal coach used to tell me to try not to play with my fingers on stage (it’s something I do when I’m nervous, and actually just a habit of mine in general) because it distracts people from my singing and they end up watching my hands instead of listening.

Also, as a little girl I used to find it hilarious how my mother moved her hands and arms around, gesturing furiously when talking animatedly. I didn’t understand why gestures were such an important part of conversation, and only later did I learn that gestures can be even more important in certain cultures. I think it truly hit home for me when I got my guide dog, because I was taught to use certain gestures to tell her to stay, walk, or go left and right. She responds to the gestures much better than to the verbal commands.

Then, during my Psychology studies, I learned that so many things can be communicated through one’s physical stance! It doesn’t only say something about your mood (hunched shoulders indicating stress or anxiety) but often one’s posture can indicate whether or not a person appears inviting and approachable. Shoulders slightly back, with arms more open communicates that one is relaxed, friendly and engaged, whereas crossed arms makes one seem closed off, less approachable, and possibly even angry or annoyed. Of course, the way we move also has an impact when we are flirting, with a slight swing in the hips when walking (as women mostly), batting of the eyelashes, and touching a person’s arm when talking to them, for example, indicating that we are interested.

I used to think that I just don’t use body language in my communication. However, I’ve been told that sometimes my feelings are very clearly communicated through my facial expressions and my stance, though it may be completely unconscious. I have also been told that it’s sometimes difficult to read my facial expressions, which led me to believe that I’d be great at poker. This may be untrue though. With what I know now, I will be much more aware of unconscious ticks and tells next time I play.

I have also come to realise that body language is really about much more than what one can see. Even I can pick up on someone’s mood and attitude from the way that their voice projects through standing and sitting in certain ways, and of course, through tone of voice. I think tone of voice counts as body language, because vocal chords are part of the body after all, and tone of voice communicates many more things than the words that are coming out of a person’s mouth. In addition, body language can be tactile, such as when someone is leading me and they move their arm behind them to indicate to me that we are going to be moving through a small space and should walk in single file.

As a blind woman, one of the things I have found most difficult about communication is eye contact. People communicate so many things with their eyes, and that is something I will never truly master. At university, I always wondered how sighted people were able to attract each other’s attention so easily. Especially when in loud bars, clubs or restaurants, I found it extremely difficult to get a friend’s attention when talking to them, or when trying to engage in conversation. I generally steer clear of such loud places overall, because it’s difficult for me to hear what people are saying. Of course, sighted people find this easier, because of eye contact and because they can read lips.

Nodding and head shaking also perplexed me at some point in my life. Sometimes somebody would ask someone else a question, they would nod or shake their heads, and I would be under the impression that they didn’t respond to the question because they didn’t hear or were being rude, which wasn’t the case.

Of course, body language is incredibly important to D/deaf people. Often, they understand what others are saying through lip reading, and sign language is definitely a form of body language. For people with cognitive impairments who are not very verbal, their state of mind is often communicated physically. This also counts for people on the autism spectrum.

Something that I also learned later in life is that there are certain types of body language that make wheelchair users more comfortable too. This might not be the case for all of them, but I have been told that looking up at someone all the time when talking to them can be very uncomfortable. It can be physically uncomfortable to always be looking up and perhaps straining one’s neck, and it can be uncomfortable in the other sense of the word to look up at people, because it sometimes unconsciously says something about the power dynamics in the interaction. A friend also told me that she struggles to make conversation when she is in a group of people who are all standing, because they are just on different levels, making eye contact difficult. Some wheelchair users very much appreciate it, if during conversation, people can be on the same level as them. Crouching is a complicated thing, because wheelchair users also don’t want to feel that the person they’re talking too is acting unnaturally. Sometimes, crouching can also be perceived as what one might do when speaking to a child. I’m not saying that all crouching is bad though. I have just been told that, when possible, it’s a good idea to find somewhere to sit when engaging in a conversation with a wheelchair user.

There is so much more that I need to understand about body language, and body language in relation to disability specifically, so this is by no means a comprehensive coverage of the topic. Still, it’s something interesting to think about, and over the years I have learned that just because I’m blind doesn’t mean that I can simply give the middle finger to nonverbal communication.