13 FAQs

Lilley is lying on her stomach on the grass with her guide dog Teska beside her. She is wearing blue jeans and a long sleeved blue V-necked T-shirt. Her chin rests in her left hand, and she is holding a glass of wine in the other. A stable is visible in the background.

This week’s article is going to address some of the frequently asked questions that I get from nondisabled people. This is more an article about me, and my specific situation, as opposed to one about disability in general. However, perhaps you can glean some insights that can be applied to other blind or otherwise disabled people.

  1. “How do you brush your teeth?” This is one of the more silly questions that I get, but you’d be surprised how frequently I get it. The answer is that I take my toothbrush, run some water on it, take the toothpaste tube, open it, squeeze a certain amount of toothpaste onto my toothbrush, stick the toothbrush in my mouth, and move it around so that the bristles clean my teeth. Duh! I brush my teeth like anyone else does. People don’t actually look in the mirror all the time when brushing their teeth. Why should it be a challenge for me?
  2. “May I pet your dog?” Yes, absolutely, as long as you ask me first, and as long as she isn’t busy working. The thing that I have a problem with is when I’m on my way somewhere (sometimes in a hurry) and someone jumps in front of me and starts petting her without even acknowledging my existence. It’s just plain rude and inconsiderate. Acknowledge the human behind the dog. Also, people seem to feel that my dog (or any dog) is public property, and they are not. Would you go up to any random pregnant woman and pat her stomach, or would you even touch someone else’s child without permission? When something like this happens, I often feel like sarcastically saying: “Oh yes, of course you may pet my dog. It’s not like I was on my way anywhere or like I have a life or anything.” Also please never call a person’s guide dog, especially not from across the street. This distracts them, and could be dangerous if they listen to you and make a beeline across a busy road. However, most times when people actually acknowledge me and ask, I will allow them to say hi to Teski and pet her.
  3. “How does your dog know where to go?” She doesn’t. I tell her where to go by saying “left” “right”, or “forward” combined with hand gestures. It isn’t her job to know where to go. Her job is to make sure I don’t walk into people and obstacles, fall down steps, or walk across a road without stopping. She will stop at a curb, I listen for traffic, and I tell her to go forward when I think it’s safe. She is trained to disobey me in that one command though, if she sees a car that I missed for some reason. She also becomes familiar with routes that we have often walked, so she will tend to walk familiar routes unless I tell her otherwise.
  4. “How much can you see?” I am classified as legally blind, and I don’t see enough to read, write, drive, or move around in an unfamiliar environment without a cane or a dog. I do have light perception, so I can usually see what time of day it is, if the sun is shining, and some things about my environment such as where there are windows. I can’t see colours, but I can distinguish different shades. I used to be able to see colours when I was a little girl, but my eye condition is deteriorating. I know what most colours look like. I just can’t tell them apart anymore by looking at them. My understanding of what colours look like are based on memory. Interestingly, the only colour that I’ve never seen (so struggle to picture) is purple. I just know that it is sort of a combination of red and blue. This has actually made it quite a special colour to me. Lastly, I can often see when there is a person in front of me, but I wouldn’t be able to see what they look like. I can see more or less depending on the lighting, and I see best when there are contrasts.
  5. “How did you become blind,” or “Have you been blind since birth?” The answer is that I’ve been blind since birth, and my eye condition is a genetic condition called Lebers Congenital Amaurosis (LCA). It has to do with pigmentation on the retina. Not that this is very important to me, but it is highly unlikely that any children I might have will have the condition, unless I were to have children with someone with exactly the same gene. I don’t mind telling people about my eye condition, but I would generally advise you to avoid asking someone how they became disabled as a rule, unless you know that person well. This is because some people have had highly traumatic experiences that caused their disabilities, such as perhaps having been in a terrible car accident. It can be considered to be a bit nosy as well. Also, for the love of wine, never, ever ask a disabled person anything about their toilet habits. None of your beeswax.
  6. “Are your other senses stronger?” No, but just as the muscle in a right-handed person’s left arm would become much stronger than might have usually been the case if they lost their right arm, my ears are trained to pick up details that others would miss. In this sense, my hearing is better than that of most sighted people.
  7. “How do you dream?” This is an interesting one. I obviously interpret it to mean “Do you see any differently in your dreams?” The short answer is that, in my dreams, I see as I see when I am awake. All my senses in the dream world work like my senses do in the real world. This means that completely blind people will also not see at all in their dreams. However, (and this is the interesting part) people who have lost their sight might still have dreams in which they can see. This is based on memory.
  8. How do you work, answer emails, make social media posts etc?” I use my phone and my computer, and they have programmes installed called screen readers. They do exactly what the name implies. They read what is on the screen, and I navigate around using the arrow keys. I never use a mouse. Aside from this, I also know braille. This is a tactile system involving six dots used in different combinations to make letters. I don’t use it often anymore, aside from when a restaurant has a braille menu, when I am making a speech or giving a talk and use notes, or when I am trying to learn a new language. Learning braille definitely had a massive impact on my ability to spell, regardless of what my mother might tell you about my spelling.
  9. How do you pick out your clothes?” Aside from what a clothing item physically looks like, it has other distinguishers such as the type of material, and the cut. I recognise most of my clothes, because they differ from other items in my closet. If they are of the same material and cut, but they are of different colours, I would usually ask someone which is which, or else I could arrange them in my closet in a way in which I would know, for example, that the blue dress always hangs to the left of the green one. I choose the clothing that I buy according to texture and cut, and also according to colour. I would obviously just need to be told what colours are available.
  10. “What is the most ableist thing anyone has ever said to you?” This one isn’t as frequently asked as the rest, but it has been asked, and I felt it was worth a mention. It is highly insulting when people tell my partners how they are incredibly good people for dating me. You know, they really are, because I’m difficult, but people usually mean it with reference to the fact that I’m disabled. I bring as much to my relationships as my partners bring, and it’s not as if they do everything for me and I am completely reliant on them. Another example (and this one is a double whammy of ableism and sexism( was the time that a guy told me that women don’t need to be as dominant as I am, then asked if I have such a dominant personality because I’m trying to compensate for my disability. It’s such a pity that I was so shocked that I only came up with a comeback half an hour later, and it was too late to say it by then. “I know you’re not a woman, but you don’t need to have such a dominant personality as a man either, so what exactly are you trying to compensate for?”
  11. Do you ever get sad that you’re blind?” No, I mostly don’t. There are two reasons. Firstly, I’ve been blind all my life, so as I see it, you can’t miss what you’ve never had. It is sometimes a bit distressing to me when I notice that my eye condition has deteriorated though, and I find I can’t do something easily that I could do before, or see something I used to find pretty. I also really wish I could drive. I think I would have enjoyed it, and the independence it would bring. Secondly, I am part of a disability community, and we find pride in our disabilities. I don’t see my blindness as a problem. As I’ve said before in my previous article, I see discrimination, exclusion and inaccessibility as a problem. If someone figured out a cure for my condition, I’m honestly not even completely sure that I’d go for it. It would be one hell of an adjustment, and it could possibly even be traumatising. More importantly than this though, I’m comfortable in my identity.
  12. “Can I pray for you?” Yeah sure, but please pray that I will experience inclusion in the situations that I encounter, or even just pray that I eventually find the right life partner, or that I one day establish a successful business and live my purpose. Don’t decide for me what I should find important. My blindness in and of itself is not an issue which I consider important. It is also not a defect, a generational curse, a sign that I just don’t have faith in being “healed”, a sign that my family is being punished by God for something, or the devil’s work. Although I am agnostic, I absolutely respect your faith, but please also respect my views on my own disability. In addition, please can we not do this out loud in public? It makes me feel like a spectacle.
  13. “How many fingers am I holding up?” Um, I don’t know, because I’m blind, and that means that I can’t… wait for it… see! Okay, I don’t get this question from adults (often). But parents, (although I have incredible patience for children asking questions) please teach your children about disabilities, and please teach them not to do this! It’s annoying.

Disabled and Proud

Lilley from the chest up, wearing a black tank top and a necklace with a symbol of a three-headed dragon on the disc hanging from the chain. Her blue-green eyes are facing towards the sun and her lips are slightly pursed. Her hair has a golden sheen to it due to the sunlight, and behind her is a white pillar.

Today I would like to talk about another pet peeve of mine: being called “differently abled” or “handicapable”.

You might be wondering why this offends me, when only last week I posted an article in which one of the main points was that I’m not often offended as a disabled person. Since these terms don’t paint disability in a negative light and actually highlight a person’s capabilities, aren’t they positive terms to use? I (and many other disabled people) say otherwise. They immediately warrant an eye-roll.

The thing is, people assume that using these terms is a sign of respect towards disabled people, but most of us see it as an attempt to candy coat our reality. The terms differently abled and handicapable were coined by people who were nondisabled. Staying true to the phrase “nothing about us without us”, (which was a strong motto for people with disabilities during the Disability Rights Movement) disabled people want to decide for themselves what language should be used when referring to them.

This isn’t the only (or even the most important) issue though. Many people with disabilities are proudly disabled, and don’t see their impairments as a defect. Disabilities are an element of diversity, and they are a reality. Therefore, nondisabled people referring to disabled people as differently abled often sends the message that it is the nondisabled themselves who are uncomfortable with facing the reality of disability.

Think of it this way: I don’t have a problem with not being able to see. I have a problem with society being discriminatory towards me because I can’t see, and I have a problem with environments, reading material (whether digital or hard copy) and appliances that are designed with only nondisabled people in mind. So if acknowledging that I am disabled (my eyes literally don’t work) in and of itself isn’t a problem to me, why is it a problem to you?

No amount of flowery language is going to change the reality of the fact that one of my senses is missing, but I’m totally okay with that. I hardly ever fall on my face because I’ve learned great reflexes, and I can echo-locate (the trained ability to use sounds reflecting off objects to form a mental picture of my environment). Sure, that means that I am able to achieve the same result that a sighted person can through employing a “different” strategy, but being disabled and acknowledging it doesn’t mean that I consider myself to be unable to do anything at all, or to be less capable. I am simply capable, not handicapable.

As I have expressed before, what bugs me about life as a disabled person is linked to inaccessibility, exclusion and discrimination. Making use of the “differently abled and handicapable” rhetoric distracts from, and minimises the experiences of disabled people in daily life. It allows the conversation to return to how terribly inspirational a wheelchair user is for just getting to a job interview on time, being confident and positive and presenting well. It distracts from the fact that that wheelchair user might have had to leave the house an hour earlier to be on time for that interview, because they realise that their path to the location might be blocked by cars parked right across the pavement and they might need to double back and take a longer way, or because there might not be lifts or ramps in and around the building, meaning that they would have to make another plan to get where they need to be. That wheelchair user (though possibly resourceful and good at problem-solving) is still facing societal barriers to their progress. Society should still be expected to accommodate them better, regardless of how skilled they are at working around those barriers.

Then there is the matter of community and identity. Interestingly, some disabled people who do not incorporate disability into their sense of identity (sometimes by trying to hide or minimise it to fit in with nondisabled society) and who do not really associate with other disabled people do prefer the flowery “differently abled” terminology. However, many disabled people such as myself have found it hugely beneficial to associate with others who share their experiences, to form part of a disabled community that shares ideas, supports one another and works together towards greater equality, and to incorporate this into their sense of identity. My community (which spans over many continents) refers to itself as the disability community. We claim our disabilities proudly, and we have a culture.

We are no different (in that sense) from people of colour who might incorporate their race and the culture that comes with it into their sense of identity, or queer people who choose to be part of the LGBTQ+ community and attend pride rallies etc. Just as you are minimising the experiences of black people and distracting from racial issues that should be addressed by saying “I don’t see colour”, refusing to use the word disability can be seen as disrespectful. It is basically saying to us that we are totally equal in society, as long as we are innovative and hard-working enough. The only disability is not, I repeat not, a bad attitude.

On the flip side, you are actually respecting us by calling us disabled, instead of imposing another term on us, because we have chosen to call ourselves disabled and we don’t see it as anything to be ashamed of.

South Africa has some very negative history, as most people know. Yet, we are an extremely beautiful country, we are working towards a better future, and we are a strong, resilient and (we have been told) friendly people.

Many years from now, I look forward to a time in South Africa where the playing field is completely equal, and where the injustices in our history no longer severely effect generations of black people. Perhaps when that time comes, we will do away with the racial tick boxes on forms, and recognise that race is a social construct that no longer serves us to the same degree as before in some senses. Just as this may come to be, there may come a time when environments are designed with all bodies in mind, and where perceptions around what our bodies and minds can and cannot do are just another way in which we are diverse. However, when that time comes, I hope we don’t lose sight of our amazing diverse cultures, including both ethnic cultures and the disability culture.

Like my country, my disability has its setbacks, but I am entirely comfortable with it overall. My disability is not a tragedy. I am proudly South African, and I am proudly disabled.

Icebreaker: Disability and Humour

Lilley (her long blonde hair fairly straight this time) wears a green and black fitted dress and stands between two men who appear to be in their early thirties. One of them has wavy dark brown hair down to his collar, and the other has shorter straight sleek black hair. The three stand with their arms around each other's shoulders and a tree is visible behind them.

All of my articles so far have been so serious! So let’s lighten the mood, shall we?

Today I would like to talk about disability and humour, and I’m going to start by telling a story from my teenage years.

One day, my two best friends and I were wandering the mall in the town in which we all went to school. There’s an Afrikaans expression that loosely translates to: “In the land of the blind, One-Eye is king.” It’s a metaphor, but we like to apply the expression in a more literal sense to our situation in which we have varying degrees of sight, usually meaning that the most sighted person will walk in front if we don’t all have canes or guide dogs. By this logic, I was leading the procession, being the one with the most sight out of the three of us. The little bit of sight that I had was by no means good or even passable, so the three of us walking in a row (one behind the other holding onto each other’s elbows) were quite a menace. Incidentally, we jokingly call this a mole train.

My two friends were eager to buy biltong (a South African snack which is basically raw meat that is dried, salted and spiced) and I remembered that the biltong store had vertical lights in the window. So off we went in search of a window with vertical lights, barrelling forth, my cane tapping and people scattering. As another fun one-liner we like to use goes: “When the blind leadeth the blind…, get out of the way.”

Eventually, after walking through the entire mall whilst squinting at the windows we passed, I discovered a window that I thought might just be the one! So we found the door, entered, and were surprised not to be greeted with the smell of salty spiced meat, but by a very clean, clinical scent. This obviously wasn’t the biltong shop, but we decided to go up to the counter anyway to ask where we were and if the person behind the counter could give us directions to the right place.

“Good morning,” said I, “Please could you tell us where we are?”

The answer sent us into fits of mirth. “Good morning,” said the woman behind the counter, “You’re at the optometrists. Can we help you?”

“I think we’re a little beyond help,” one of my cronies responded, prompting more laughter from my other friend and me.

The point of this story (aside from hopefully making you smile) is that many people with disabilities appreciate humour, even if it is in relation to their disabilities. Sometimes we even appreciate fairly dark (no pun intended) humour, but of course, disabled individuals differ, so I don’t want to make a generalisation. For example, individuals with chronic pain, or people with certain mental illnesses might not appreciate your well-meant joke. There’s also a fine line between joking and mocking.

I (and most of my disabled friends and acquaintances) also don’t mind nondisabled people making jokes about disability. However, context matters. It’s also important to note that we have gone through life hearing certain jokes over and over again, so just realise that you aren’t being super clever and original when you respond to a blind person saying something like “see you tomorrow” with “no you won’t”. It isn’t necessarily offensive (although again I’m speaking for myself here) but please also don’t be offended if you get an eyeroll in response instead of a laugh.

At this point, I would like to emphasise again that disabled people differ. I’m writing from the perspective of a blind person, and I’m talking about “blind jokes” because that is what I know best. I’m also speaking from the perspective of someone who generally loves a bit of comedy, even if it is at my expense. How dull would living be if we couldn’t laugh at ourselves, and at the ridiculousness of life, right? My point is that we should all just be mindful of the differences that exist, and maybe ask your new disabled friend if they mind the occasional joke before you freely joke with them.

I’ll end off with a joke. This one I can’t take credit for, but here it is anyway: A blind man walked into a bar……… And a table, and a chair…

The What-Aboutism Fallacy

Lilley stands smiling with the Stellenbosch mountains in the background holding a white paper parasol. She is wearing a two-toned blue dress, and her wavy blonde hair is loose and tumbling over her shoulders.

Towards the end of 2020, I went onto the Facebook page of a South African news source and read a piece written by the South African President (Cyril Ramaphosa) for International Day for Persons with Disabilities. The letter made the point that the inclusion of people with disabilities is an important aspect in the recovery of the South African economy after Covid lockdowns. I was shocked and angered to read the number of comments below the letter along the lines of “but what about all the homeless and jobless” or “forget that; he should first sort out his cabinet”. And thus, a pet peeve was born!

Ever since that day, I have noticed over and over how discussion of disability leads to a phenomenon which some call “what-aboutism”. I define it as a logical fallacy whereby people try to shut down discussions of issues they don’t care to address by comparing them to other issues which they consider to be worse, and which they claim should be addressed first before moving on to the other issue. The sentences usually begin with “But what about…”.

My problem with this kind of argument (specifically in the case of disability) is manyfold. Firstly, it’s just faulty logic. Stating that Y is a problem when someone is discussing X doesn’t make X less of a problem. It’s just changing the topic. One could argue that it is valid to point out that one thing should be addressed before another because it is of greater importance, but when it comes to disability inclusion, this is not the case. I will address this later in this article.

Secondly, disability is interlinked with many of the societal problems that people consider to be more important. many of the homeless and jobless are people with disabilities. Disabled people often struggle for years to find jobs, even if they are highly educated. Employers avoid employing disabled job candidates for a variety of reasons. Some of these reasons involve employers assuming out of ignorance that the disabled candidate is incapable and would be a liability, or that the candidate might be a liability to the company in another way by costing the company money if environments or tools have to be made accessible. Think ramps and lifts for wheelchair users or screen reader compatible technology for blind computer users. Other reasons could include inflexibility on the part of the employer around allowing disabled people who have to work from home for various reasons to do so, such as blind people who can’t drive and have issues with access to transportation. Ironically, Covid has caused everyone to have to work from home, and suddenly employers see working from home as much less of a problem now that it benefits the whole world.

Some job advertisements even specify that the suitable candidate must have a drivers’ license, even if the job in question has absolutely nothing to do with the candidate’s ability to drive. Most employers don’t bother to even familiarise themselves with reasonable accommodation laws.

This is not even to mention the fact that disabled people are often employed in very low-paying, menial positions and there is a massive gap in terms of disabled representation in leadership and skilled positions.

I can speak as only one of the qualified disabled people who struggled to find a job. I was unemployed and struggling to make ends meet for three years after my studies, and the first job I stepped into after that was a very low-paying one which I had to leave anyway after a few months. It was in a different town to the one I live in, and the colleague with whom I used to get lifts moved away. Even so, I am one of the lucky few who are actually qualified. Many disabled people in South Africa live in poverty, and have never had access to education, let alone accessible education. In some cultures in South Africa, disability is stigmatised as a curse on the family of the disabled person, and the disabled children are hidden away and almost never allowed to leave the house.

In reality, people with disabilities have a lot to offer in the workplace. Aside from the fact that they might be highly qualified and skilled, diverse teams outperform homogenic teams 2:1. Although diversity is a matter of simple ethics, it also drastically affects a company’s bottom line, because a diverse workforce in which people from different demographics all feel a sense of belonging will produce the most innovative ideas. Research has also shown that people with disabilities have very strong innovative problem-solving skills, simply due to the fact that they have to solve problems and find different ways of doing things on a daily basis. However, that goes beyond the scope of this article, so let’s get back to what-aboutism. The question of diversity does link to my next point though.

Thirdly, disability is often considered less important even in the diversity and inclusion (DNI) space, which is ironically exclusionary in and of itself. I would be willing to bet that most people don’t go a month without hearing or reading something about race or gender diversity these days, but how often is disability thrown into the mix? In my experience (and I work in the DNI space) the answer is almost never, and if it is brought up, it’s in the broadest strokes. People just don’t know enough to talk about it and don’t bother doing research, and that includes DNI specialists. Why is this? Answer: largely because of what-aboutism.

I have experienced first-hand how conversations about disability have been squashed in organisations such as universities, even if these universities loudly shout about their commitment to transformation. If, for example, a disabled white straight cisgender man should raise an opinion in a sociology class, it wouldn’t take long for someone to tell him that he has no right to an opinion because he is privileged. Well, that may be the case. That man is very likely much more privileged than his black, queer, transgender, non-binary or female counterparts, but it doesn’t mean that he has no understanding of struggle, exclusion, and discrimination.

Most people know that racial disparities are still an enormous issue in South African society and in the world. Most people know that women still lag behind in terms of opportunities for advancement and in terms of being treated with dignity and respect in a world with traditionally masculine views. However, there is nothing that sets any of these group’s needs above those of another marginalised group, especially since disability intersects with so many of the other groups.

Disability issues are only now starting to be recognised at all. If I had been born just 20 years earlier, I wouldn’t have had my qualifications, and I probably still wouldn’t have a job. I’d be dependent on others, and I’d be one of the lucky few who actually have a support system. Disability is always the very last issue to be addressed in society, and that is why disability rights and the practice of inclusion towards people with disabilities still lags so very far behind rights and inclusion for other marginalised groups.

so exactly how long do we (15% of the world’s population and the biggest minority group globally) have to wait until our issues are considered to be serious? What is it that makes people think that all the rest of the world’s problems should be solved first? If such a large proportion of the world’s population is disabled, or will become disabled at some point in their lives, isn’t addressing disability-related issues helping everyone? Surely there’s enough space on the stage for all marginalised groups (let’s hope the stage has a wheelchair ramp) and shouldn’t we, as marginalised groups, be supporting each other and standing together instead of squabbling to have our issues be at the forefront of discussions about inclusion?