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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.

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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.”

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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.