March 2022 – Shadowland

March 28, 2022March 28, 2022

More than meets the eye: Disability and Body Language

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

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

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

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

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

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

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

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

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

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

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

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

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

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.