Shadowland – Page 2 – Come to the dark side. We have disability knowledge, random other ramblings, and wine, always!

March 20, 2022March 21, 2022

Disabled Demons, Angels, and the Space in Between: Part 2

In last week’s post, we discussed disabled demons, or the subhumanisation of people with disabilities in the media and in people’s general perceptions. In part 2 of the disabled demons and angels discussion, we will be examining the other side of the coin: when disabled people are seen as angelic or as superhuman, which can be equally damaging. We will conclude by discussing the space in between, or what counts as an accurate and constructive understanding of who disabled people are. Let’s dive in.

Often societal perceptions of disabled people are not malicious. They just swing to the other extreme. For example, some people hold the belief that disabled people are all good and pure, and can’t possibly be amoral. Remember the example that I used in a previous article about the character Penny in the Big Bang Theory saying: “Handicapped people are nice, Leonard. Everyone knows that.” I’m here to tell you that it unfortunately just isn’t true. There are definitely some disabled people who are simply terrible humans, and all of us (every single one) are flawed, just like you.

Not to discredit any of these organisations or programmes (because they do amazing work) but this sentiment is also often reflected in the names of charity organisations or programmes that try to improve the lives of disabled children. Think of names along the lines of Children from Heaven, or God’s Little Messengers, and the like. I am not actually mentioning real names of actual organisations/programmes that I know of (because as I said, the point of this article is not to discredit them) but you get the idea… It perpetuates the belief held by some people that individuals with disabilities are protected or especially beloved by God, because they’re “special”.

Now, I am going to address the topic of inspiration porn. Much has been written and said about this, so I am fully aware that this part of the article may be derivative and may echo what has been said in many talks and on many other blogs. However, knowledge about this phenomenon has to be spread as widely as possible, and if that involves some repetition, so be it.

Inspiration porn is essentially when disabled people are talked about in the media and elsewhere as incredibly inspirational or heroic, simply for going through life with a disability. Often, if a disabled person achieves something, they are praised in the media and elsewhere as having achieved whatever it was despite their disability, or to have overcome their disability through their achievements. I will address the problem with terms such as “overcome” and “despite” in relation to disability later in this article.

The phrase “inspiration porn” was coined by the late great Stella Young, a disability rights activist, comedian and journalist who was born with osteogenesis imperfecta, and was a wheelchair user for most of her life. In her well-known April 2014 TEDxSydney talk, “I’m not your inspiration, thank you very much”, Stella explains how her parents were approached by someone in her teenage years who wanted to nominate her for a community achievement award. However, Stella agreed with her parents’ response, which was that although it was a nice thought, Stella had not actually achieved anything at this point. Although quite strong academically, she was just a normal teenager going through life. Later in her life when she was teaching a class, a student asked her when she was going to “do her speech.” It turned out that that student had only ever experienced disabled people as being motivational speakers.

Stella explains that inspiration porn is actually a form of objectifying disabled people to make nondisabled people feel better about their own lives, and to inspire them. It is not celebrating the disabled individual. Instead, the life of the disabled person is being used to guilt or motivate nondisabled people to get off their asses and to try harder in life. It isn’t really about the disabled person.

I’m sure almost everyone reading this will have seen memes with pictures of disabled people doing various things, with captions like “The only disability in life is a bad attitude”, or “so what is your excuse?”. Firstly, as I’ve said before, the only disability in life is not a bad attitude. I have a disability, and sometimes I also have a bad attitude. They are not the same thing though. I am blind, and society makes life difficult for me by excluding me, and not treating me as equal to sighted people. This isn’t going to just go away if I maintain a positive attitude. As Stella Young said, no amount of smiling at a staircase is going to get a wheelchair user to the second floor. As for excuses, I don’t know your struggles. If for some reason you’re not living up to your potential, or to what society expects from you, I have absolutely no right to judge you.

Instead of a picture of people running with prosthetics with a caption such as one of those mentioned above, what if we reframed this to “how cooll is it that this person has a device that enables them to do something they want to do?” Or if it’s a picture of someone without arms who is painting holding the brush in their mouth, shouldn’t we be thinking more along the lines of how innovative they’re being instead of how we’re not trying hard enough?

A quick side note: on the topic of devices that help disabled people achieve their goals, remember that a wheelchair user is not “wheelchair bound”. They are not tied to their wheelchairs, and most wheelchair users also don’t hate their chairs. Wheelchairs are not holding them back. They are making them more mobile.

Anyway, next time you see an inspirational picture or read an article about a disabled person doing something or other, ask yourself the following questions:

Why are you inspired? Is the picture that someone painted by holding the brush in their mouth even that good, or are you only celebrating because it was a disabled person who painted it? Are you inspired by the blind person you saw cross a street simply because you think it must be impossible to cross streets without sight, or are you inspired because maybe they told you something meaningful when you spoke to them, if you even did?
Who is the message in the caption or the article really about? Is it about a disabled person who innovatively found a way around an obstacle or achieved something that is really of note, or is it about motivating, inspiring, or guilting nondisabled people?
What is inspiring you exactly? Why is it more inspiring to see a disabled person who won a gold medal than a nondisabled person who did the same thing? Or why is the fact that a disabled person decided to become a Paralympian more inspiring than a disabled person who decided to become a successful business person? And if you are inspired by the disabled person who became a successful business person, are you inspired because it’s an achievement for anyone to run a successful business, or are you inspired because you think it must be very difficult for disabled people to be successful in the first place?

Inspiration porn often conveys the message that the person in question is more than their disability. Yes, we are more than our disabilities. We are often well rounded human beings. However, our disabilities are part of who we are. We don’t “overcome” our disabilities. We “overcome” circumstances created by an exclusionary society that discriminates.

I’m not saying that you shouldn’t be inspired by disabled people. There are many inspirational disabled people, just as there are many inspirational nondisabled people. Stella Young, for example, says that she was inspired by a wheelchair user that came up with the bright idea of plugging their phone into their wheelchair to use the battery to charge the phone. She was not inspired that the wheelchair user managed to drag themselves out of bed in the morning, to brush their teeth, and to remember their own name. She was inspired because the wheelchair user was innovative. I am inspired by Stella Young. I’m not inspired that she made something of her life “despite” her disability. I am inspired that she made something of her life, period. One day, I hope to be as successful as she was in my disability advocacy. I hope that my message has as much of an impact on disabled and nondisabled people alike as hers did.

The bottom line is this: Framing disabled people as superhuman for simply living their lives without collapsing into despair sets the bar very low. It conveys the message that society doesn’t have very high expectations of disabled people in the first place. It reinforces the view that disabled people are super brave for simply living their lives, because it must be awful to be disabled. It isn’t awful to be disabled. It’s just what it is.

So, what is the space in between? Well, logically, if we’re not subhuman or superhuman, we’re just human! We are also not a homogenous group. We have differing views, even on disability. You are reading an article written by only one disabled person. Take into consideration that I do not speak for all of us. If you’re wondering how a specific disabled individual sees life, just ask.

Disabled individuals may have extraordinary characteristics (as most individuals do) but all in all, they’re all just people who have hopes, dreams, friends, families, strengths, weaknesses, worries, heartaches, and things that make them happy, just like everyone else. Some of them throw parties. Some of them keep to themselves. Some of them date, and some haven’t met anyone who would make them want to navigate that minefield. Some of them are religious, and some are not. Some like pineapple on pizza, and others believe that there has never been a worse invention in the history of Earth.

In case you were wondering, I am decidedly pro pineapple on pizza, and I am human, as much as I wish I had a superpower such as the ability to teleport, read minds, or to blast that person refusing to let my guide dog and I enter the pizza restaurant into the next dimension. See? Now that would be a worthwhile superpower to have, as opposed to managing to simply draw breath as a blind woman.

March 14, 2022

Disabled Demons, Angels, and the Space in Between: Part 1

Lilley and a group of friends sit on and stand around a sofa in Halloween costumes. Lilley is dressed as Harley Quin, with a short black ballerina skirt, a red halter top, hair in two long ponytails, and a symbol drawn on her face. There is also a man in a Joker costume, a man wearing a shiny colourful wig, a woman dressed as a black cat, a man dressed as Superman, and a man wrapped in bandages like a mummy. Halloween decorations hang in the background.

This week’s topic is one with a lot of discussion points, so I am breaking it into two parts. I’ve been avoiding writing this article for a while now, precisely because it is such a complicated one, and because it’s a topic I’ve so often discussed over the years. It needs to be discussed on any platform addressing disability though, so I’m giving it a bash.

What do I mean by disabled demons and angels? Put simply, society’s tendency to frame people with disabilities as either subhuman (demons) or superhuman (angels). We’re going to address the demonisation of disabled people this week, and address angels in the next post. Let’s jump in.

Disability is often framed in a very negative light. Unfortunately, the stigma associated with disabilities leads to actual disabled individuals also being considered to be subhuman, or “less than”. In South Africa and elsewhere, there are cultures in which people with disabilities are seen as inherently bad, which is supposed to explain why they were “punished” with a disability. Some people consider disabled bodies to be hideous, unnatural, or objects of shame or pity.

This has long been a problem in film and television depicting disabled characters. There is a strong link between disability and villainous characters. Darth Vader, Voldemort, Freddy Kruger and Dr Poison are all examples of villains with scarred or otherwise disfigured faces, which perpetuates the notion that beautiful equals good and pure, and marked or ugly in the traditional sense equals bad and deeply flawed.

Disability is also used in this sense to make villains seem more intimidating and sinister, such as in the case of Captain Hook, who lost his hand to a crocodile and attached a hook to his arm in its place. Mental illness, of course, is also very commonly used to make a character seem more unpredictable and scary, such as the Joker in Batman. Other examples of disabled villains include Alistaire Smythe in Spider Man (he is paralysed from the waist down) and Destiny from the X-Men (who is blind) although admittedly there is also a disabled hero in the X-Men. I am not arguing that villains should never be portrayed as disabled, but it is worth taking a close look at the reasoning behind why the villain is given a disability in the first place. Is it just a trait, or is it signifying something about how scary or flawed the villain is?

Other commonly held beliefs regarding disability that subhumanise disabled people include that their families have been punished, or that a generational curse has been put on the genetically disabled person’s family. In addition, there is a tendency amongst some religious groups to see people with disabilities as just not having enough faith, because if they did, they would have been healed. The extreme form of all of this is the perception that disabled people are creatures of the devil.

Sometimes, the subhumanisation of disabled people is not related to evil, but linked to them being subhuman in that their lives are just considered worse, and worth less than the lives of nondisabled people. In these cases, disabled people are often seen as objects of pity and/or as charity cases.

People have often expressed to me that they are so very sorry that I am blind, in which case I respond that I am not. Acquaintances of mine have often had money shoved into their hands, because people either assumed they were beggars, or felt so sorry for them that they just had to give them something to make their miserable existences a little brighter.

Of course, another example of when disabled people are considered to be worth less is, as I’ve mentioned in previous articles, in the situation when individuals tell my partners that they are such good people for dating me. It’s essentially expressing the idea that I must be a burden on the nondisabled partner, and that they could have a much more fulfilling relationship should they have decided to date a nondisabled woman.

Lastly, another way in which disabled people are treated as subhuman is through being infantilised. Often, the disabled are perceived as not having the ability to make decisions for themselves, and things are decided on their behalf. This, unfortunately, has been perpetuated by institutions and organisations that exist for the purposes of “helping” the disabled.

I can’t tell you how many times people have asked the nondisabled person accompanying me what I would like to eat or drink, instead of asking me directly. People often also use a singsong voice when talking to me, as one would use when talking to a small child, or use the diminutive forms of words. The latter is most often the case in Afrikaans, in which someone might say “hier is jou kossies… Jy kan sommer met jou handjies eet” meaning “here is your food… you can just eat with your hands,” but food (kos) and “hands “hande” are in the diminutive forms. And no, I don’t only ever eat with my hands. I generally eat with a knife and fork, unless it’s pizza or burgers etc.

In conclusion, I obviously do not believe that disabled people are subhuman in any way. We develop into adults who have agency, we don’t need anybody’s pity, and we are valuable. And if demons turn out to be real, and all they are is just a bunch of disabled people using wheelchairs instead of burning chariots, I’m sure many a horror movie enthusiast will be very sadly disappointed in the makeup of the legions of hell.

March 6, 2022March 9, 2022

Blind Date’s View on Disabled Dating

Lilley sits smiling with candle light reflected on her face. On the ring finger of her right hand, a silver Irish Claddagh ring inlaid with small diamonds and sapphires is visible. The design is of a heart, with two hands (one on either side of the heart) and a crown (above the heart), and the heart's point faces inwards.

Last week, I mentioned how often people make comments to my partners about how kind or brave they are for dating a disabled person. Their response to this is that they don’t see it as a burden. They see it as a privilege to be dating me. Well, I’m flawed, so it isn’t always easy. But as I said in my previous article, this has nothing to do with my disability. I offer as much as my partners do in the relationship, and I am not reliant on them. So let’s talk about disabled dating a little bit more.

I’m a little like a South African Taylor Swift. “I’ve got a blank space baby, and I’ll write your name.” I write songs about my exes, and I’ve been called a serial monogamist, meaning that I have had very long relationships (often spanning years) that have ended. But eh, that’s alright, it’s only the last one that lasts, isn’t it?

I have dated both disabled and nondisabled people, and both types of dating have different nuances. Dating a fellow blind person means that you have to Uber everywhere, and you can’t help each other with tasks that require sight, but it would have been exactly the same if I had been single, and I’m perfectly capable of living alone. The cool thing about dating a blind person for me, is that they understand my daily experiences and my frustrations in a way that no nondisabled person can.

On the other hand, I don’t find it difficult to date a nondisabled person, as long as that person is open minded, and doesn’t try to wrap me in cotton wool. Of course, there are practical aspects that come into play, in the sense that the sighted partner can help me when I drop something and can’t find it, can drive the two of us places, and of course it makes shopping a whole lot easier. This isn’t a clinical weighing up of advantages and disadvantages though. It’s the individual, and the way you click that truly matters.

One myth that I would definitely like to dispel is that disabled girls are easy. Think of Howard in The Big Bang Theory, when he and his friends were in a bar trying to pick up women. He says his strategy is to allow the jocks to thin out the crowd until only “the old, the sick and the lame” are left. He says “Oh, and if you spot a chick with a Seeing Eye dog, she’s mine.”

Howard shows a lot of character growth in the series going forward, but at this point he was still a bit of a creep. His comment was a reflection of who the character is at this stage, so I don’t blame the show for it. However, what might have been a better portrayal of stereotypes vs the reality of disabilities and dating would have been if Howard did actually approach the girl with the guide dog and she turned him down, or if she was shown leaving with an attractive man (or woman).

Disabled women (and disabled people of any gender) are not desperate. Many of us are attractive, or at least perfectly comfortable in our own skin, and many of us do not find it difficult to meet dates or partners who find us appealing. Society’s view of what constitutes an attractive body is skewed anyway.

Incidentally, a better portrayal of disability stereotypes in The Big Bang Theory was when the character Raj was dating a deaf girl, and Leonard was worried that she was using him for his money. Penny says to him: “Handicapped people are nice, Leonard. Everyone knows that.” It’s a common stereotype that if you’re disabled, you can’t possibly be amoral. However, later on we see that Raj’s girlfriend does turn out to be a gold digger, so Penny was proven wrong.

On that note, I’ve often heard comments along the lines of “since you can’t see, you must be so much less shallow than the rest of us! You must go entirely on someone’s personality.” This is not true. Blind people can be as shallow as anyone else. Although I like to believe that I primarily choose partners based on personality, I have to admit that there are certain body types, for example, that I find more attractive than others. I notice things like this by holding onto someone’s arm, or giving them a hug. Even hearing where someone’s voice comes from gives a good idea of their height. And speaking of voices, I melt for a man with a gorgious voice. I don’t mean he has to be able to sing, but he has to have a voice I like, or we’re unlikely to get to the next level. It can so happen that I meet someone, start liking them due to other factors, then actually start liking their voice after I’ve started liking the other aspects, but a nice voice is often one of the first things that attract me to people.

At any rate, on to my next point. If you’re ever on a first date with a blind person, you’re not being helpful and romantic if you offer to let them touch your face. The media loves this trope. It pops up in music videos, movies and shows all the time. Blind people generally do not go around sensitively touching people’s faces. It’s just weird, man! Especially during Covid times, it’s not a good idea anyway. Yes, of course I’ve touched the faces of my partners, but it is in the same way that a sighted person in a relationship probably has touched their partner’s face. It only happens once you’re a lot more intimate than having just met and gone on a first date.

If you plan to go on a date with a disabled person, the main thing to remember is to ask, not just do. Perhaps a blind person wants to walk alone with their guide dog, but they might appreciate if you offer to guide them by letting them take your elbow. Do not grab them by the shoulders and steer though. We’re not cars! Same goes for wheelchair users. They will ask if they want to be pushed.

In addition, don’t leave your blind date in the middle of an open area while you do something else, because that can be disconcerting and they will feel in the way. Maybe show them a chair or table, or whatever. Also definitely tell them if you’re going somewhere, because it’s embarrassing to be seen “talking to ghosts” as I call it, not realising that the person I’m with is not there.

Sure, it’s gentlemanly to pull out a girl’s chair, but tell her if you do so, or she might assume it’s there, sit down, and make an intimate connection with the floor instead of with you. This has actually almost happened to me.

When it comes to dinner conversation, don’t be scared to ask about your date’s disability, but also make sure that isn’t the only topic of conversation. Remember, they’re used to being asked about it all the time, and it gets tedious. Get to know the person, not just the disability.

If you find that the waiter is insisting on addressing you when they are talking about your disabled date’s order (this happens all the time), tell them to speak directly to the disabled person. We can speak for ourselves, and we don’t bite!

Dating apps are also an interesting topic of conversation when it comes to disabled people and dating. Tinder is quite inaccessible with a screen reader, but I have a friend who uses Bumble. He says that two of the most frustrating experiences for him are when there is only a picture and no profile description (he immediately swipes left when he sees this) and also when people ghost him immediately when they find out he’s disabled. On the bright side, he has recently met a lovely girl, and after much conversation and a few very successful dates, they are now in a relationship.

Finally, it would be remiss of me if I didn’t say something about the movie Me Before You. This movie is a mine field when it comes to portraying disability in a way that creates completely wrong perceptions of disability. I’m not going to go into the “assisted suicide is fine when it comes to disabled people, because their lives must be so terrible” rhetoric right now. It goes beyond the scope of this article, and I will address it in another. However, there’s a scene in which the disabled male lead tells Emilia Clarke’s character that he doesn’t want to sleep with her, because she could have so much better, and he doesn’t want that to be her memory. This is utter bullshit (forgive my language). I’m not saying there aren’t disabled people who have internalised ableism, and it’s fair to portray those people in literature and TV, but right now it just sends completely the wrong message.

Speaking for myself, for my disabled friends, and for many disabled people I’ve met and liked, you’d be lucky to have us. A life with a disabled partner is not half a life. It could be an incredibly rewarding one. Next time you meet a disabled person that you’re attracted to, why not (respectfully) ask to get to know them, then perhaps ask for their number, and maybe, just maybe, if they like you back, you might embark on one hell of an interesting and fun journey.

February 26, 2022February 26, 2022

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.

“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?
“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.
“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.
“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.
“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.
“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.
“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.
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.
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.
“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?”
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.
“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.
“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.

February 19, 2022February 19, 2022

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.

February 11, 2022February 12, 2022

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…

February 4, 2022February 11, 2022

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?

January 28, 2022February 6, 2022

Who’s Keeping the Dogs Out?

A woman (who appears to be in her twenties) walks in early evening sunlight with her cheerful-looking golden retriever in harness. The woman is wearing black jeans and a blue V-necked shirt. Her long wavy blonde hair appears to be blowing out behind her slightly as if ruffled by a breeze.

Discrimination towards persons with disabilities is a daily occurrence worldwide. However, it is worth noting that developing countries such as my own are still lagging behind the rest of the world when it comes to the implementation of inclusive practices.

Despite the fact that “inclusivity” has become a buzzword in South Africa and elsewhere in the world, the conversations are mostly centred around race and gender and, ironically, disability is often excluded from these conversations. Through this article, I wish to initiate an honest conversation about disability and discrimination by focusing specifically on the discrimination experienced by service dog owners on nearly a daily basis, both in my country and elsewhere.

On Friday 15 October 2021, I was on my way to represent the company I work for at a business event and I used Uber to organize a lift. I was refused by three Uber drivers because I was travelling with my guide dog Teska, causing me to be more than 45 minutes late for the event. This is despite the fact that Uber’s policy states that service dogs must be accommodated in all Uber rides. Furthermore, Section 9 of the Equality Act in South Africa states that no person may unfairly discriminate against any person on the ground of disability, including:

Denying or removing from any person who has a disability, any supporting or enabling facility necessary for their functioning in society;
Failing to eliminate obstacles that unfairly limit or restrict persons with disabilities from enjoying equal opportunities; or
Failing to take steps to reasonably accommodate the needs of such persons.

When this incident occurred, there happened to be no Uber Assists (although I do not require assistance), or even Uber XLs in the area, and I was eventually forced to order a much more expensive Uber Black. When I reported the drivers on the app, I was refunded. However, I felt that more systemic action was required. When I posted the story on Uber’s Facebook page, however, I was met with responses that were very clearly generated by a bot. These responses simply encouraged me over and over to report the individual drivers, and I received no human response even after pointing out that I felt that the issue should be considered of enough importance to warrant human intervention.

As I stated on their page: I do not require a personal apology, as I feel that this would do nothing to resolve the issue. I require Uber to issue a public apology to the disabled community, and to explain what they intend to do to cause meaningful change. One suggestion would be to ensure that there is a specific option on the app to report service dog related incidents, as is the case in many other countries. This would immediately make it more visible to drivers.

Blind and visually impaired persons (to name just one group of disabled people who make use of service dogs and who require these dogs to accompany them everywhere) have regularly experienced discrimination from restaurants, transportation services, and even governmental organizations by being refused entry or service when out and about with their guide dogs. These refusals are related to concerns about the cleanliness of the dogs, concerns about how the dogs will interact with other dogs (in the case of wine farms with dogs on the premises) and concerns about the dogs upsetting or scaring other customers. Sometimes, if entry is granted to restaurants or other establishments, the service dog owner is requested to sit outside, or in an isolated corner. This is a violation of the right to freedom of movement, and to human dignity.

The incident on 15 October was not the first time that Uber refused me service because of my guide dog, and it has happened to numerous other blind Uber customers. It has happened to me again after the occasion mentioned in this article, and I have heard of two other guide dog owners who have been refused access since.

I am of the opinion that reporting individual Uber drivers for refusing service dogs (as one is currently encouraged to do by their customer service) will not do any good. Often, these drivers are people working hard for a living and who may be uninformed. One could argue that they do not properly read the Uber policies, but for many Uber drivers in South Africa and elsewhere, English is not their first language. I believe that it is Uber’s responsibility to properly train their drivers regarding their service dog policy. Uber, as a massive global company, cannot keep shifting the blame onto their drivers, as this has been a problem for years now.

Drivers refuse service dogs for a number of reasons, the most common reason being that the dogs will leave hair in the car which would upset other customers. However, service dog owners keep their animals as clean as possible precisely because they have to travel with them everywhere they go, and take them into public spaces such as restaurants.

Another example of similar discrimination is the time I was refused entry to three restaurants in a row a few years ago, on one of the hottest days of the year. In 2019, yet another coffee shop (where I was supposed to meet a business associate) would not grant me entry, but asked me to sit outside in the rain with my dog.

Incidents such as these are not merely inconvenient, causing service dog owners to be late for important engagements, to be seated in uncomfortable weather conditions, or for meeting venues to be changed, but they leave individuals feeling humiliated, unwelcome and disrespected.

The time has come for South African organizations (whether they be restaurants, stores, or South African branches of multinational corporations) to take responsibility for their policies and the implementation thereof. I would also like to urge South Africans with disabilities to come forward with their stories of discrimination. We have been silent for too long, afraid of disturbing the peace and upsetting the rest of the world, but in our silence, the truth lies hidden. Our experiences and our views are as important as anybody else’s in a society that claims to prize equality, and we should not have to apologize for taking up space, whether it be at a restaurant table of our choice amongst other customers, or in a vehicle that is often our only way of getting from point A to point B.

To the international disabled and nondisabled community I say this: now is the time to recognize the discriminatory behaviours that are often even more prevalent in developing countries than they are in developed countries. Let us join hands to ensure that discrimination towards the disabled is not only eradicated in countries such as the United States and Europe, but worldwide.

Please note: This article focuses on my experiences, and the experiences of others like me who are generally educated professionals. It does not necessarily reflect the experiences of all disabled South Africans, many of whom face greater exclusion, stigmatisation and discrimination than I do. I intend to publish another article during the course of this year, addressing the lack of access to education and societal participation experienced by a huge proportion of the less privileged South African disabled community.

January 8, 2022March 6, 2022

The Hammer and the Chisel

A woman who appears to be in her 20s sits with a glass of white wine in hand. She has long wavy blonde hair and blue-green eyes. The picture is only from the chest up, but she appears to be wearing a purple dress or top.

Almost everyone who knows me knows that I am passionate about disability advocacy. However, I don’t think that everyone necessarily understands the complexity behind the reasons why.

I am disabled, so I want to live in a world that is more inclusive towards me, and towards people like me. I have always wanted to speak for myself, as opposed to being spoken for, because I best understand my own needs. I want my life to have meaning, and for me, that meaning is to leave the world a better place than it was when I entered it. These are all huge (and partially self-explanatory) contributing factors, but they only explain to a limited extent why I choose to educate and advocate as a disability activist. They explain my goals. They do not explain the motivation behind my methods.

Large portions of the disabled community are starting to become frustrated by the fact that they are always expected to act as ambassadors for their community. They argue that expecting disabled people to constantly self-advocate to be included is unfair, and places the responsibility for making environments and situations accessible and inclusive onto the disabled person, as opposed to society. It should be the responsibility of individuals, groups and especially organisations – of society as a whole – to educate themselves on how to be inclusive and how to appropriately act as allies to people with disabilities, and disabled people shouldn’t have to constantly ask for basic accommodations and respect for their human rights.

Furthermore, the argument is that disabled people (just like everyone else) should be allowed to have a bad day, run out of patience, and to not always have to act as a perfect posterchild for an entire group of marginalised people. They should be allowed to be offended when someone does something insensitive, exclusionary, or frustratingly ignorant, as opposed to constantly trying to put the nondisabled person at ease.

Lastly, it is worth noting that disabled people often have to spend large amounts of energy on day-to-day tasks that might require much less energy from nondisabled people, and that disabled people might not have energy left to educate patiently after a long day.

I agree with these arguments. It is unfair. The arguments are completely in line with the social model (a way of framing disability to which I subscribe) which is based around the idea that disability is created through an exclusive society and inaccessible environments, and that impairments simply form part of diversity. This is as opposed to the medical model, which frames disability as synonymous with the impairment, and sees it as something that needs to be fixed or cured. This model places the responsibility on the disabled person to adapt to society as much as they can to be perceived as normal.

I obviously do not agree with the medical model way of seeing disability. So why do I choose to spend my energy on educating nondisabled people? Why do I argue that this should be done with patience and grace? Here are some key reasons:

I strongly believe in the common catch phrase that has been used in the disability advocacy community for decades: Nothing about us without us. I want a say when it comes to my own needs, because I understand them best. The nondisabled have made decisions on behalf of the disabled for centuries, and this needs to stop. I don’t feel that I can necessarily trust everyone to do their own research on disability, because the internet is full of opinions about disability that are expressed by nondisabled people, opinions by disabled people who have internalised ableist beliefs, and views that simply just do not reflect my own. Disabled people are diverse, and their opinions and needs differ. If I want to be accommodated as an individual, I don’t want to be spoken for.
This is closely related to my next reason. Self-advocacy makes me feel empowered. Before I learned to stand up for myself and my community, I did not have a voice. It is so easy to fall into a state of learned helplessness, allowing things to be done for us instead of seeking ways to do those things independently. It is so easy to simply accept things the way they are, or to complain about them with no plan on how to address them. There are many problematic elements of society, but I choose to believe that most people out there are not actively out to get me or trying to make my life miserable. If I believed the latter, I would be whiny and self-pitying, and that doesn’t align with how I perceive my identity. I prefer to see myself as capable, and as an active storyteller in my own life.
Right now, the harsh reality is that I will not be fully included if I do not speak out. Change will either not occur at all, or it will occur at a much slower rate than desired. I would like to work towards a world where this won’t always have to be the case. A world in which disabled children won’t have to learn to be fighters almost as soon as they can express themselves. I am working towards such a world, but part of working towards this involves exactly that: Educating and self-advocating. If I should have disabled children, I would teach them that it isn’t fair that they should be expected to constantly be the ambassador, yet I would also teach them self-advocacy and problem-solving skills anyway.
Simply having spent my whole life as a disabled person has made problem-solving one of my strongest skills, and this is highly prized in the workplace and in multiple other spheres of life. If I had not been born blind, I might have not been nearly as resilient and adaptable as I am today. These are strengths that I highly value within myself. Charles Darwin is often quoted as having said that evolution is about the survival of the fittest. However, what is often left out is that Darwin defined “fittest” as meaning “most adaptable”. I want to live in a society where disabilities are not seen as shortcomings, but in which diversity and adaptability are seen as strengths.
As for the argument that disabled people should be allowed to have a bad day and not always be expected to react politely to frustrating situations, to that I say absolutely! I (as an individual) have all the right in the world to occasionally have had enough. I have the right to sometimes lose my temper at a ridiculous situation, just as every other individual in the world has that same right. However, with this comes the need to realise and accept the reality that the person that I snapped at isn’t going to walk away understanding disability any better than they did when they did whatever it was that offended me. To the contrary, they might just avoid speaking to disabled people altogether after such an interaction, as they might be too scared to offend again. If I respond angrily or sarcastically to a well-meant (though perhaps ignorant) question about disability, I discourage nondisabled people from asking questions in the future. I squash interest in disability-related matters instead of creating awareness, I discourage people who might be trying their best to learn, I alienate potential allies, and I accomplish exactly nothing.

So why do I advocate in the way that I do? Simply put, because inclusivity breeds inclusivity. In my 29 years of experience as a blind person, I have found that the patient and gentle responses are simply what work best. For three years during university, I acted as chairperson of a student society that raised awareness about, and advocated for the rights of disabled students. What stood out to me about our society (vs. other advocacy-type societies on campus) was that we made it fun for nondisabled students to attend our events. Nondisabled people didn’t feel attacked and blamed, and so they actually became interested in disability-related matters, became allies, and sometimes radically changed the ways they talked and thought about disability. Some other societies did not adopt the same approach as we did, and the result was that many people just avoided joining their societies or attending their events. These societies positioned people who were not members of the group for which they were advocating as “the other”. There were some societies that I would have joined as an ally (because I cared about the cause) but their methods made me feel as if my opinions and ideas didn’t matter at all, and were offensive simply because they were coming from someone who wasn’t part of the specific demographic group.

In conclusion, there are many reasons that I choose to advocate and educate. Some are personal, and some are ethical. However, the reason that I spend my valuable time teaching others (as opposed to either yelling at them or simply not addressing systemic discrimination in society) is because that is what works best, in my experience at least. Of course there is room for a more combative approach in certain situations, especially when dealing with organisations and governments, or when the gentle approach was used unsuccessfully. However, when dealing with individuals, I believe that calm, empathetic, two-way conversations are what will result in my views being heard and respected.

I choose to take up a tool, because I want to help to build the kind of society that I wish to live in. I choose a chisel instead of a hammer, because a hammer destroys, and a chisel shapes. I choose to shape.