Posted on

Me After Me Before You

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Posted on

Stim and Response

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

This week’s article takes a deep dive into something very closely related to body language, but that few people know anything about or understand: stimming. We will discuss what it is, why many disabled people engage in it, whether it is good or bad, and finally we will talk about applied behavioural analysis, a type of therapy which is used to minimise stimming behaviours in autistic children (and sometimes adults) and to make them behave in specific ways.

On a quick side note, I would like to point out that I heavily drew on the writings of Dr Arielle Silverman in this article, as well as information from several articles that I found online. Until I read Dr Silverman’s book, I wasn’t even aware that these behaviours were called stims, and I did quite a lot of research for the purposes of this article, as stims were something I didn’t ever give much thought.

So what is stimming? Stimming is a term used to describe a movement or behaviour that is meant to provide sensory stimulation. This can be anything from rocking one’s upper body, to pushing one’s eyes, to hand flapping, to rubbing or stroking specific types of objects. Other stims include hair pulling, rubbing or scratching the skin, walking on tiptoes or pacing, flicking or snapping fingers, bouncing, twirling, repeating specific words or phrases, blinking repetitively, swinging the head, staring at lights or rotating objects, or rearranging objects. Nondisabled society tends to have a very negative response to seeing disabled people stim.

Most of these kinds of stimming are probably most common in people on the autism spectrum, but people with other disabilities such as blindness also tend to stim. When it is a blind person stimming, the behaviours are sometimes referred to as blindisms.

When I was a little girl, I used to push at my eyes with my knuckles, or press them with my fingers. Due to how common this behaviour is in people who were born blind, it has been dubbed the “oculo-digital reflex”. Contrary to what people assumed, I did this not because it made me see sparks, or anything of the like. The best way I can describe it is that it felt comfortable and soothing, and I often did it unconsciously. To this day, I sometimes do it, but from a young age I was taught by my mother and my school teachers that I shouldn’t do it, so I have largely unlearned the habit. There was good reason behind them stopping me, in my opinion. They said it might damage the little sight that I have, and that it would cause my eyes to become sunken. This could already be seen in the eyes of many of my schoolmates. It is worth noting that it is something that happens gradually, and that it is also difficult to tell if eye poking causes sight loss or sunken eyes. Some eye diseases are degenerative, such as my own, and some cause changes in eye shape over time. Still, I am glad that I mostly stopped poking my eyes overall. I still stim though. I play with my fingers or nails (as you can see in this post’s featured image), especially when bored, excited or nervous. Sometimes I just do it unconsciously in conversation when I am totally relaxed though, and it doesn’t signify anything about my mood. I also have a little black cilicon cat wine glass marker that I carry with me everywhere. I put it on my glass, not to tell me which is my wine glass, but to play with. The texture is nice, and the cat reminds me of my own real black cat Riddle whom I hardly ever get to see anymore due to reasons I won’t go into here. I have other stims, but these are just two prominent examples.

Other behaviours noticeable in blind people I went to school with included rocking back and forth, swinging their heads, or chewing at their hair. These behaviours can also be seen in many people with autism. Unlike eye pushing, these behaviours are not harmful. They just look strange to sighted or neurotypical people.

The thing that most nondisabled people don’t understand though, is that it isn’t only disabled people who stim. Most nondisabled toddlers will jump, bounce, run and climb. These behaviours can be potentially dangerous if the toddler isn’t being supervised, but they are allowed and seen as normal. Some people tap or chew their pencils, bite their nails, play with their rings or bracelets, squeeze stress balls or play with small objects. Others twirl their hair around their fingers, jiggle their feet or legs, crack their joints or knuckles, and drum their fingers on surfaces.

Whilst some of these behaviours are criticised, they are still seen as completely normal, simply because they are very common behaviours that are engaged in by nondisabled people. Gesturing while talking, even if it’s over the phone, can also be considered to be a stim. However, it is merely seen as body language, a way in which people express themselves. You may recall from the previous article that I found it very strange when I was little. I just couldn’t understand why people felt the need to do so.

Is stimming good or bad? This is a complicated question. Stimming can be good, in that it provides needed sensory input, may release pent-up energy, may be physical expressions of people’s emotions, and may even lessen some types of unwanted sensory input. Autistic people use stimming as a form of comfort in order to manage anxiety.

However, some stimming (such as my eye pushing) can actually cause harm. Further examples include head banging, excessive scratching or rubbing at skin, hair pulling to the point where it falls or is yanked out (the psychological term for this is trichotillomania and is not always simply a stim), biting or punching, swallowing or sucking dangerous or poisonous items, and picking at sores or scabs.

Another situation in which stimming can be harmful is in cases where it forms part of someone’s obsessive-compulsive disorder (OCD), which is a disorder that involves someone fixating on an obsession which causes anxiety, and then engaging in a compulsive behaviour that is meant to reduce that anxiety, but just ends up feeding the obsession. For example, as part of my OCD, I very regularly wash my hands. I am over stimulated when my hands feel dirty or grimy, so I wash them to feel clean. This can get to the point where I wash my hands without them being dirty, because I just think they might be. This can lead to very dry and cracked skin, and in extreme cases, even bleeding. I have also been known to rearrange objects over and over, which takes a lot of time. Something else that I do that might be considered a stim, is to count grooves on objects, because I have an obsessive need to know the number of grooves. I count them, forget the number, and have to start all over again. Many people (such as one of my friends to whom I read this paragraph) might disagree with me that these count as stims. My friend’s logic is that stims are usually enjoyable to people, whereas OCD symptoms become highly frustrating to people who exhibit them. In my view, they count as stims though, because behaviours such as hand washing can initially provide much relief to someone with OCD, and are engaged in with the purpose of lowering anxiety levels.

In the cases mentioned above, addressing these behaviours is a positive thing, in my opinion. However, we need to ask ourselves if it is really necessary to fixate on stopping other stims that are not harmful to anyone. For example, rocking isn’t something that is harmful. It is just seen as negative, because it looks so strange to nondisabled people. Whilst I prefer not to rock, because rocking might make me appear unprofessional in a work setting, for example, others may not care about that, and might argue that society should adapt to the fact that different people have different physical mannerisms. Honestly, I think it should too. Society is exceedingly judgemental towards people who don’t fit the mould of what is considered “normal”.

Regardless of whether or not one sees stimming as good or bad, there are ways and means to address them. Firstly, it needs to be consensual. Forcing therapy on someone is never okay, unless that person is a serious danger to themselves or others. Secondly, it should never, ever be addressed through punishment, such as a parent slapping a child when they stim, or taking away their toys or other possessions. Most of the time, punishment doesn’t really work in addressing stims anyway. When I was younger, I personally asked for my hands to be lightly slapped by my mother when she would see me pushing my eyes, but that was my own choice, and the slaps never hurt.

Ways in which harmful or socially frowned-upon stims could be stopped or controlled in certain settings (if the stim is actually something that the individual wants to let go) could include finding an alternative way to stim which is harmless, subtle and socially acceptable. For example, an individual could discretely use a fidget object such as a stress ball. Wearing a reminder bracelet, or having a reminder word could also work. Blind children or adults who don’t necessarily know how their body language is being perceived could take acting or body language classes to learn about typical nonverbal communication. Rewards can also be used to motivate children to control or stop a certain stim, although it is worth noting that it might not be a sustainable solution. Also, as Dr Silverman points out, parents are not always present to make sure the child is not engaging in the specific behaviour. A child may be very aware of their parent’s gaze when they are expecting a reward, and thus be consciously trying not to stim. However, the child may unconsciously stim when their parents are not there, because they are not paying attention.

At this point, I would like to address a specific type of therapy that is the most prevalent for people with autism when trying to teach them to adapt “better” to society and the world around them. It is called applied behavioural analysis (ABA). Extensive research shows that this type of therapy is effective in instilling adaptive behaviours in autistic children and adults, but at worst, this type of therapy is actively cruel, even when used with the best intentions. This might not be easy for parents of neurodivergent children who believe in ABA to hear (because of course they don’t want to hurt their children) but it needs to be said.

There are many different variations of ABA. However, the therapy typically involves three steps:

  1. An instruction called an SD: This can be a verbal instruction given in a slightly louder voice than one would normally use, or it can involve presenting the autistic child with a picture or toy with which to interact.
  2. Response or prompt: This involves the child responding to the instruction, or the therapist giving a prompt if the child seems not to understand.
  3. Reinforcement or correction: If the child follows the instruction or responds in a way that is considered to be appropriate, they are praised and rewarded immediately to reinforce the action. If they do not follow the instruction, or respond in the “wrong” way, they are corrected. This can range from being told “no” in a neutral voice and being instructively told or shown the appropriate response, to pausing and leaving out the “no” before the repeat instruction and being told or shown the appropriate response, to the very extreme (and highly problematic) correction in the form of a punishment such as an electric shock.

These days, ABA therapists have moved away from punishing autistic children when they don’t comply with instructions, and focus strongly on reward. However, punishment is not the only thing with which anti-ABA advocates take issue. The main critique is that the focus of ABA is to make autistic children appear less autistic, or to act in accordance with what society considers to be “normal”. This is as opposed to trying to determine why the autistic child is acting in the way that they are. Advocates in the autistic community believe that the focus should be on teaching skills, such as assisting an autistic child who is silent to start talking and engaging with schoolmates, or assisting an older person with autism to be more organised, instead of the focus being on normalisation. For this kind of approach, therapists would need to take guidance from adults with autism. Autistic people need to be seen as clients, not patients, and they need to have a say in the things they want to address. Therapy should not be about changing or concealing who a person is. It is also necessary to consider that the same types of therapy may not work for all autistic people, such as in a case where the autistic child may understand what is being instructed or requested, but may not be able to immediately plan a response.

Also, ABA methodology can be cruel regardless of whether or not there is punishment. ABA therapists often grab the hands of autistic children and fold them in their laps, or regularly touch them in other ways. Many autistic people have an extreme aversion to being touched, and nobody should ever simply just be touched without consent in the first place. ABA therapists are known to force people with autism to make eye contact, which is something that is very uncomfortable for them. Prolonged eye contact can actually be uncomfortable to many people who are not on the spectrum, and this goes for touch as well.

Most importantly, autistic people feel that ABA does not place importance on the emotions and needs of the individual. Instead, the behaviours are all that count. If a child appears to be tired, overstimulated, or upset, this is regularly just ignored in favour of continuing to push them to follow instructions. Often, autistic children will comply, simply to get it over with. This does not mean they are comfortable or happy. This simply means that they are being taught to suppress their needs, and that their feelings don’t matter. Attempts to communicate things that are not in line with behaviours being demanded by the therapist are mostly just ignored. When autistic people are forced to engage with certain environments such as busy supermarkets, their ability to tolerate discomfort is not an indication that they are suddenly functioning “better”. In the moment, they might not experience a melt-down, but it is just being postponed. ABA demands a child’s attention, but refuses to give attention back when the child is trying to communicate something.

Another thing that is vital to understand, is that ABA sessions are not simply a couple of hours a week. It is recommended that young children between the ages of two and five go through forty hours of therapy a week. Is it any wonder the children become tired and upset? They are being put through forty hours a week of essentially being told that it is good and right for them to suppress their emotions, and that their ways of soothing themselves are wrong. ABA does not account for the fact that children are not taught to stand up for themselves or to self-advocate. Instead they are taught to never disobey or disagree.

Finally, teaching these things to children can be very dangerous. 70% of people with autistic spectrum disorder (ASD) have experienced sexual abuse by the time that they have finished high school. It is very possible that this is partially a result of the fact that they were taught as children to never object, say no, or refuse to follow orders.

In conclusion, stimming is not simply an activity such as doodling when a person is bored. For many people, it is a self-soothing behaviour that reduces stress and regulates emotions. Many also feel that the stims are a form of communication, because often, facial expressions are misinterpreted. Although I have pointed out some harmful stims in this article, I genuinely hope that I have been able to communicate that this is a much more complicated issue than one might initially think when seeing someone engaging in a behaviour that is considered strange by society, and that it is necessary to be extremely cognisant when it comes to trying to stop or control these behaviours in both children and adults.