Tourette Syndrome, Flamenco, and the assertion of dignity

Recently I’ve been having trouble with my tics; I’ve been feeling more and more of a need to suppress as to not disturb anybody. For anybody with knowledge of Tourette Syndrome, you’ll know that suppression is very much unhelpful because the tics will inevitably come out, just at another time. Over the last week or so I’ve been doing some reading into the philosophical underpinnings of what we know to be ‘dignity’, and I came across a chapter in Andrew Sayer’s “Why Things Matter to People: Social Science, Values, and Ethical Life” that hit me like a ton of bricks.

In this book, Sayer talks about the origins of Flamenco as a genre/style of dance. Though not fully known, the roots of flamenco seem to lie in Roma migration from Rajasthan in northwest India to Spain between the 9th and 14th centuries. These migrants were considered lesser than the existing population within Spain, and were thought of as people without any dignity.

Now there are many approaches to the concept of dignity within philosophy, but a common one is the assumed intrinsic nature of dignity to human being; that is to say that if you are a human, dignity is a part of your very being. Some say that this comes from a Christianity-influenced understanding of man as made in God’s very image. However, people have discussed the fragility of dignity also, considering it as something that is very much dependent on your actions and your ability to act in an appropriate manner.

Whilst the extent of our dignity may be partially influenced by relationality, Flamenco as a style of dance, so Sayer theorises, can be used to illustrate an example of the assertion of the intrinsic dignity that constitutes our very human being. Sayer writes:

“By bending the lower leg up from the knee behind her and then bringing it down forcefully, the dancer manages to stamp without bouncing… By this means an aura of controlled power can be signaled. There is an improbable conjunction of dignity or self-command in bearing and movement with catharsis…” (p206-207)

The performance of Flamenco then is a powerful reclamation of the dignity that others tell people they do not have. It is the assertion of the power that comes from knowing that dignity is a part of our make-up. It stamps away, showcasing to others the dignity that they accused these migrants of not having.

He goes on to write “And it is not only that the appearance of the dance is one of dignity and power: doing it gives the dancer a feeling of dignity and empowerment” (p207). In short, Flamenco not only performs and showcases dignity, but it reaffirms it to the performers themselves. It is a powerful reclamation of dignity that was once ridden absent.

So what is the relevance for Tourette Syndrome then? Perhaps, baring all of this in mind, we can consider the releasing of tourettic tics as this powerful assertion of the dignity that is intrinsic to human being, also. I might not have full control over the way that I perform it, but perhaps the active refusal to abide by society’s requirement of me to suppress as to not disturb others is, in itself, asserting my dignity. Perhaps I need to stop thinking of my tics as something to be ashamed of, but as something to be proud of; something that allows me, as somebody rendered ‘undignified’, to stand firm in the knowledge that I not only have dignity, but that dignity is me. It is part of my very make-up. Of course, this is not to conflate the experiences of Rajasthani migrants with that of Tourettic individuals, but perhaps this frameworking offers some useful approaches for the consideration of tourettic tics.

If you are a fellow ticcer, maybe it’s time to think of your tics similarly too. I’d love to hear your thoughts, so do feel free to comment or get in touch!

D

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Toxic Body Positivity: Towards a philosophy of ‘body neutrality’

The body positivity movement has been around for a long while, and it’s overall message is to be positive and to always celebrate the body you have, regardless of it’s appearance. However, in many contexts it could be argued that body positivity is inherently toxic. Instead, I feel that we should be implementing the philosophy of body neutrality, focusing on what your body can [or cannot] do for you; we need to move away from the appearance-focused rhetoric of self-love.

For clarification, whilst body positivity might say ‘I feel good about myself, because I know I’m beautiful‘, body neutrality might say ‘How I feel about myself has nothing to do with my appearance‘.

Going on the body neutrality perspective, I’d argue that it’s vitally important to realise not only what your body can do for you, but also what it cannot do. As disabled people, we need to spend a lot more effort looking after and caring for our bodies, as they’re often more likely to get injured or fall sick. Miserandino’s ‘spoon theory‘ is often referred to within disabled communities to help illustrate the limited energy reserves that exist amongst disabled people, which mean it’s vital to plan a day in advance according to said energy levels. For example, you might start a day with 8 spoons. Activities such as cooking, walking to work, showering and many more would use up a certain number of spoons, which run out as the day progresses. Approaching the body from this neutrality perspective allows for a less abled-centric approach. A philosophy of body positivity may result in a lack of acknowledgement of the limited ability of the disabled body in question, in turn causing people to run out of spoons too quickly on a regular basis, and as a result wear themselves out to the point of further health issues and sickness. The body positivity movement does not necessarily consider disabled voices, whereas the body neutrality approach does.

Additionally, to take this past body neutrality and to critique body positive movements further, I’d argue that it’s ok – if not vital – to allow yourself to feel authentic feelings about your body. For example I want to stress that it’s ok to be devastated about your body following a medical diagnosis. A disability diagnosis can be truly life changing, and ultimately due to societal attitudes towards disabled bodies, things will change. There may be activities you cannot partake in; clothes you cannot wear; foods you can no longer indulge in. Disability is limiting, and it’s more than okay to allow yourself to feel upset. Not only in this instance, but many others too.

So next time somebody tells you to be body positive, approach with caution. Your feelings are valid. Your worth is not in how ‘beautiful’ or aesthetically pleasing you feel. being beautiful, whatever that may look like to you or anyone else, is not a criteria for feeling good about yourself.

What should be considered ‘non-essential’?: a call for people to check their able-bodied privilege

Ahh, the debate over what should and shouldn’t be classed as essential enough to remain open during this COVID-19 pandemic. Thanks to many recent conversations, I have recently come to realise that what many of us class as non-essential in the midst of this pandemic is very much based on ableist assumptions. Below I provide a list of examples with some short explanations, along with a call for people to check their able-bodied privilege before ranting about what is and what is not essential.

Coffee Shops and Pubs

Coffee shops and pubs are some of the very few places that are centrally located and accessible without driving that have disabled and/or radar key accessed toilets. There’s no question that toilets are necessary, and you don’t need any experience of studying public health to know that. Not everybody has the luxury of being able to ‘hold it’.

Click and Collect facilities for non-supermarkets

Some might argue that this is uneccesary and that it’s perhaps even easier to just get things delivered straight to your door. This is an assumption that lacks consideration of the disabled population. What if you have to get down three flights of stairs with a mobility impairment? What if you are unable to hear when the doorbell goes off? What if the courier leaves your product in a location that they deem ‘safe’ but isn’t actually accessible to you? Click and collect facilities allow for the unplanned disruptions that frequently occur in the days of disabled people, due to the wider collection window that can sometimes even span across multiple days.

Electronics shops

Many disabled people rely on certain technology to aid them in their day to day lives, whether that’s computer monitors or space heaters (the list would be endless if I were to try to provide one that is fully comprehensive!). Not only is click and collect necessary here, as outlined in the previous post, but some may require in-person guidance and may need to physically experience the product they’re interested in before buying it. This is especially the case for those with sensory issues.

Homeware shops

Leading on from the previous points, people need to experience homeware before buying it and this is especially so for those who live with disabilities, regardless of whether or not they are working from home. Even things such as fabrics can influence those with disabilities or neurodiversities.

Gyms

This has been at the forefront of the debate of the essentiality of services recently. Ultimately, if you’re able-bodied then exercising outdoors is a lot more feasible. Especially at this time of year with icy floors, cold weather, fluctuating levels of visability, uneven surfaces, etc. there isn’t always safe outdoors space for disabled people to exercise. Gyms are specifically designed with health and safety in mind. Disabled people are often more prone to injury also, and having staff present who are first-aid trained is more than just a luxury for many of us.

Places of worship

So many services such as Alcoholics Anonymous, foodbanks, refuge and respite service, etc operate out of places of worship. Disabled people are more likely to need these services in many instances. We are more likely to live in poverty, whether that’s have restricted access to food, a safe place to sleep or even the finances to buy food. Our government does not care about us, but the reality is that religious groups do, and so the fact of the matter is that places of worship are essential for many of us disabled folk.

This list could go on and on, but I know I have provided a significant number of short examples already that illustrate some of the key things we need to consider in our discussions of what should and should not be deemed ‘essential’ in the midst of the coronavirus pandemic. So next time you have these conversations, keep disabled people in mind. Check your privilege, whether you’re talking to a disabled person or not. It’s time to stop forgetting about us.

LET’S TALK ABOUT *THAT* JOKE: ON TOURETTIC HUMOUR

Many of you might be aware of the joke that won ‘joke of the year’ at the Edinburgh Fringe Festival last year. For those who are not, it goes a little something like this:

“I keep randomly shouting out ‘Broccoli’ and ‘Cauliflower’ – I think I might have florets”

Now don’t get me wrong, I’ve laughed at my tics before, I’ve even laughed at others’ (though I’d like to add that this was all out of love). However, much like Jess Thom states in response to this joke, I am ‘tired’ of Tourettes being used for cheap gags. I completely understand that humour can be a great way of educating people, however not only have people found this joke offensive, but also in my opinion it’s not really that funny as a joke itself (I feel sad for the quality of comedy that exists to make this the supposed height of comedy at Edinburgh Fringe this year…)!

It’s no secret that disability, notably tourettes, has been used as the brunt of many jokes by comedians, tourettic and non-tourettic alike, but the real question here is as follows:

“Is it okay to use Tourettes Syndrome for comedic purposes?”

It’s hard for me to give a short and concise answer, but I’ll do my very best (there’s a reason I have blog as opposed to just tweeting)! What it all boils down to for me is the context of the joke.

in case you didn't notice...

Above, you can see a piece from previous research into Tourettes Syndrome and post-phenomenological geographies (see here for more context). Evidently, the creator has used comedy in this zine piece to make a point about the fact that due to the very vocal nature of their tics, it becomes very clear to others that they have Tourettes Syndrome. So what’s the difference between the ‘joke of the year’ aforementioned, and this? The main thing is context. 

The key issue with this is that Olaf Falafel, the comedian in question, does not have Tourettes. An illustration of why this is problematic stems from some interesting history about the use of memes that are related to disability. Over the last decade, memes have been used in a variety of ways and many of them are entirely problematic. Three examples of this, as discussed by Hermans (2004) include (1) the charity case; (2) the inspirational meme; and (3) the cheat meme…

Charity case memes are those that exist only in order to show support for a cause performatively – for example, a company could post a meme about accessibility and how important it it, but then not follow through in the workplace. This gives the illusion that it is a cause the organisation cares about, but in reality what they care about is appearing good from a branding perspective. It’s a bit like the digital version of having recycling bins in that fast-food chain that just get thrown in with the general trash in the back alley anyway. These memes also allow for the performative support of causes by other social media users – does that individual really support Black Lives Matter or are they just reposting it onto their Instagram story because everybody else is…? It’s clear to see the issue with these memes. 

Inspirational memes are another big issue. Have you ever come across a meme that reads something like: ‘what’s your excuse?’ placed on top of an image of a female amputee running? This is a meme that makes use of somebody who is disabled, in a way that might boost their own business, even if the ‘business’ in question is a charitable organisation. This is commodifying the disabled body, for the benefit and inspiration of those who are able-bodied. Again, this is not acceptable.

And lastly we have the ‘cheat’ meme, which often depict those with disabilities as scroungers, tricking a capitalist system into getting welfare benefits. They might read something a little like ‘Being fat is not a disability’. This is the most outright and explicitly unacceptable meme kind that impacts the disabled. 

So where does Falafel’s Joke of the Year come into play here? Maybe you’ve made the connection already, but just like all of these meme-types that I’ve mentioned, this joke uses a disabled population (the tourettic community), whilst serving to benefit an able-bodied population exclusively. It may not serve to provide inspiration to run a marathon, or to explicitly slander those with tourettes, but the capitalist commodification of disability is the underlying issue here. 

However, on a more positive note the tourettic community have been fighting back and creating memes of our own as a form of resistance. Many without TS don’t understand the jokes, and can not currently (and may never) relate to them, but that is precisely what makes these memes a political act of resistance. We have been using our own diagnoses to produce memes that are for our community; memes by tourettics, for tourettics, to put it in short. 

You might be asking, where do we go from here? I’d suggest that going forward, you take notice of the memes that you interact with. Are they ableist? If you don’t know, why not ask a disabled pal of their opinion? What is the intention, and is it offensive? Why are you interacting with this meme? What more can you do that like or share a post to benefit the cause in question? These are all things you could consider to ensure that you’re a better ally to your disabled pals. But perhaps, and most importantly of all, we should be challenging commercial and entertainment giants like E4 about the impact and ableist joke that they’ve awarded the title of Edinburgh Fringe Festival’s Joke of the Year back in 2019…

The Song of My Life: Reflections on ‘Quiet’ and Tourettes

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Did you know that every single thing in this universe is currently vibrating? Did you also know that sound is simply how our bodies react to and acknowledge said vibrations?

As humans, we are not exempt from the science that tells us that everything is made up of loads of teeny-tiny particles. From our hands to our hearts; our brains to our bladders – our bodies and it’s organs are accumulations of particles even smaller than the specks of dust on the ground that man was created from. This means that every single individual part of our bodies is creating different and unique sounds. Your very body is a concoction of noises, all in different pitches, timbres, tones and melodies. Your very body is the ultimate song, with more harmonies and key changes and styles than you could ever even comprehend.

And so when I think of ‘quiet’, I know that my body is NOT. I never sit in silence; my entire life has a full orchestra playing out its unique soundtrack that I often forget exists. I forget about the most beautiful song of my life because of technical issues. Synapses meet, electrical pulses jump, and my life seems to get set to ‘fast-forward’, twitching and snorting and grunting and cracking and yelling. It disrupts the flow. It is the kid in the AmDram production of RENT who thinks he can riff, attempting to improvise all the associated intricacies, but most definitely cannot. He attempts without any success, but he attempts. He sings off-key and out of time and let me tell you now, conducting your life in fast-forward is uncomfortable for every party involved.

Then it comes to me and all of a sudden I realise I’ve been trying to train the kid who can’t riff, and that kid exclusively. The orchestra has become a clique and so no matter how much I train him, that kid won’t get better until we all learn to accept him for more than his musical ability. It’s time for the song of my life to become inclusive. Perhaps together we can make something new that has never been heard before; perhaps it’s time to follow that simultaneous, unplanned change of key, time signature and melody. One band can’t sing one song forever, after all.

60 days indoors: Tourettes and why it took me 60 days to leave my house during the quarantine

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Everybody is staying indoors more in the COVID-19 pandemic, it’s a given. We’re all trying to remain safe and protect ourselves and our loved ones. However, I know I speak for more than just myself when I say that as a result of my Tourettes I haven’t left the house to run errands at all since I began social-distancing and quarantining myself to my house. Until today!

My anxieties over leaving the house in this time were particularly bad purely because of my Tourettes, and the associated tics that I have. Firstly, the large bulk of my tics currently are breathing-related. Exhaling quickly through my note, breathing hard, and forcing what sounds like a tickly cough. As you can imagine, that’s less than ideal with everything going on right now. Admittedly, a lot of my reluctance to leave the house here comes from feeling self-conscious about having people give me dirty looks, thinking that I’m ill as I sniff and cough. However, it’s also caused me to worry that if I am carrying COVID-19 asymptotically then realistically I am more likely to be passing it along to people I encounter.

“So why not wear a mask?”

Good question. My tics are pretty influenced by the clothes I’m wearing, and by my comfort levels. Wearing over-the-ear headphones, clothes that are too tight, or anything that comes into contact with my face can sometimes trigger my tics to be worse. Unfortunately, this includes wearing a face mask.

On my run to the post office (that as much as I wanted to avoid, I had art commissions that I’d promised to post to some clients), I decided to wear the facemask. The post office is perhaps a two-minute walk from my front door, so thankfully I didn’t come into contact with too many people. But as I walked down my road, I couldn’t help but notice the occasional glance as I coughed and sniffed under my mask. I twitched my head upwards, blinked too hard, and stretched open my mouth as my tics were worsened by my face mask’s presence. To my frustration, this meant that the facemask kept moving out of alignment, and meant that I had to keep readjusting it, perhaps defeating the point of me wearing it in the first place?

As I sit back in my home now, I’m realising how blessed I am to currently be living with others who are able to run errands on behalf of the household. If I was living alone right now, perhaps I would be more used to the masks and new rules of social distancing by now. But the fact of the matter is that I’m not, and it’s made me worry about going back to work. What if we’re required to wear face masks? What if my tics are bad to a point where they distract the others in my office and make it hard for me to focus on getting any work done? Will I be allowed to work from home a little longer? I’m sure these are questions that many others with TS are asking themselves at this point and they’re all very valid questions. It’s so incredibly important to consider nuance in terms of how different populations respond in odd times such as this, be it nuance in terms of disability, race, or gender amongst many other things.

Does TS then make somebody more vulnerable in this pandemic? I do not know the answers, but I think it’s definitely a nuance to think about (or a narrative that I wanted to ‘put out there’ and discuss).

I’d love to hear any thoughts that you may have, so please do feel free to comment or drop me a message! I hope you’re all keeping well and safe in this crazy time!

 


This post was written as a part of Tourettes Syndrome Awareness Month began a few days back, on the 15th of May and will continue until June 15th. There will be more posts to follow, so watch this space!

Disability Justice & COVID-19: How is activism changing?

Untitled_Artwork 11Activism is a very contested term nowadays. I know people who consider themselves activists; those who cannot stand the thought of being in the room with an ‘activist’; and those who would just roll their eyes should I mention the very word. But what actually is activism? What does it look like? Who is an activist?

The Cambridge online dictionary defines the word activism as “the use of direct and noticeable action to achieve a result, usually a political or a social one”, and subsequently defined an activist as “a person who believes strongly in political or social change and takes part in activities such as public protests to try to make this happen”.

I’m pretty sure that, like myself, you thought of protests and marches when you even saw the very word ‘activism’ in the title of this post. However, it’s important to discuss how activism is much more than that, particularly from a Tourettic/disabled standpoint. Especially in times such as these what with COVID-19 causing us to isolate and rendering us pretty much unable to participate in stereotypical forms of activism.

Disability Justice

Disabled Justice is a movement/framework for disabled activism that derived from the initial disability rights movement. Whilst the disability rights movements tended to focus on one issue at a time, the idea of disability justice builds upon these initial movements, implementing a framework that allows us to consider the intersectionality of disability rights and issues that surround it.

“Disability Justice is contextual, it’s improvised, it changes…” – Kay Ulanday Barrett

There is a whole lot more information giving the full ‘backstory’ as such that can be found – I’d recommend Skin, Tooth, and Bone: The Basis of Movement is Our People. A Disability Primer” if you want some more context here! However, one of the principles of Disability Justice as a movement is sustainability, the idea that we should collectively pace ourselves and value our bodily experiences in disabled activism; we should use our experiences as a map of sorts that move us into a more intentional approach. In the past, how many times have you heard of a political and/or social issue and ran full steam ahead with passion, trying to change things as quickly as possible and running full steam ahead? How many times has what you’ve done worked out, without being detrimental to others or other causes that you support? The Disability Justice movement has been criticised for being slow-moving, but perhaps we could learn something about the intentionality of our specific activism activities, generally speaking?

I feel that disabled individuals (including but not limited to D/deaf, neurodivergent, mobility-restricted, etc) tend to be better than able-bodied individuals at listening to their bodies, and allowing themselves to live life at the pace their own body works the best at. Perhaps a part of this, and the Disability Justice movement’s leadership of those who are the most impacted by disability issues, are to thank for their focus on intentionality? Regardless, it’s interesting to see how able-bodied activists have been responding to this forced isolation as a result of governmental movement restrictions as a result of COVID-19.

What’s changing?

I will not mention any specific organisations or individuals in this, but I have noticed certain people I know who consider themselves ‘activists’ really struggling with this idea of not being able to respond quickly and with urgency in response to political, environmental, social, etc changes occurring. There seems to be an influx of activist distress all around whenever I open my social media at the moment. However, it’s been interesting to see that those who I mentioned earlier that actively disassociate themselves with the term ‘activist’ have been participating in activism perhaps without even realising it. What is most notable to me is that disabled individuals I know have not changed the ways in which they are participating in activism… How does this make sense?

Unfortunately, it’s no secret to note that we live in an ableist society (shortly put, capitalism depends on the gain of a ruling class at the expense of others, encouraging competition as a means of survival. As disabled individuals resist conforming to normative levels/forms of productivity, their worth is – according to capitalism – much lower than able-bodied individuals). As this society can be very isolating for disabled populations, perhaps disabled activists are not changing so much in terms of the ways they act out their activism because they have been better equipped to thrive in isolated-activism? I’ve seen it myself, even in work, that we’re moving towards a focus on accessibility. From image descriptions, to live captioning, to BSL interpretation, to consideration of colour and contrast on promotional materials – COVID-19 has started to make everything we do revolve more so around accessibility. It’s moving to the forefront, albeit ever so slightly, of what we plan and the same is happening with other activist activities that have been forced to move online, as just one example – what Disability Justice has been focussing on for years now.

Everyone has been talking about things ‘going back to normal’ eventually, but I truly believe that they should and will not. I genuinely feel that this move to a more accessibility-centric way of operating should remain, both in activism and in the work we do generally, be it events planning or administration or human resources or teaching or generic management of teams. This change is necessary, and it looks like it just might be happening.

So what might activism look like post-coronavirus? Marching in a protest? Yes, that’s activism. Checking up on and showing up for disabled individuals? Yes, that’s also activism. Activism can take many forms, but it’s important to realise that now, more than ever, these acts of micro-activism (for lack of a better phrase) are becoming more and more common, particularly amongst those within their community. Buying food for Foodbanks or delivering groceries to a neighbour with mobility issues who can’t face to stand for 2 hours in a queue for Tesco are acts that resist the capitalistic structure of our society, and surely anti-capitalist acts are very much activism, right?

And so I warmly welcome to you come back to my initial questions once more, and invite you to ask yourself the following.

What is activism? What does it look like? Who is an activist?

 

“IS THERE A PILL FOR THAT?”

I always find it interesting when people talk about treatments or remedies that they’ve tried in an attempt to cure tourettes. Across multiple online forums, people talk about what medication to try, considering CBD oil, antidepressants, and even things like antihistamines in an attempt to lessen the frequency and severity of tics. Asking advice on physical medications, this is most frequently (that I have seen) parents posting about how they can cure their child. However, many times when an individual with TS posts about physical medication, they’re referring to the side effects of medications they have tried in the past for a variety of physical illnesses and mental health conditions, from blood thinners to antipsychotic meds. Tourettic individuals seem to take into greater consideration the experience of the medication as opposed to the end result.

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It’s fascinating to me that there’s so many questions every single day in these online forums, from both tourettic and non-tourettic individuals. However, I’m more interested in this idea of generalisation. It’s no secret that TS is something that is extremely difficult to diagnose. Without mentioning specific organisations or individuals, there are multiple medical professionals, charitable organisations and popular media outlets who present a huge array of incorrect generalisations when discussing TS. Some of these generalisations include the idea that Tourettes Syndrome always consists of swearing or obscene gestures (coprolalia; copropraxia), and that TS is a condition that only children can develop (surprise! You can develop TS at any stage in life). I think there’s a lot of danger in generalisation. This is particularly the case for TS, because if tics can vary on an individual scale in severity, mode, and frequency even day-to-day, then how can we assume that TS presents itself similarly across all it’s sufferers? And that’s even before considering socio-cultural-specific developmental psychological factors that might have an influence (more on this in another post to come!). This lack of uniformity within the tourettic community actually causes an absence of the sense of community amongst tourettics. Many people with TS have never met another individual with the same condition, and I know that was largely the case for the majority of individuals who participated in my Masters Thesis research sessions, and I personally find it somewhat refreshing to see the sheer variety of forms tics can take. It never fails to surprise me.

I suppose then that the answer to the question that the title and collage presents is not as simple as yes or no. It’s not black and white. Whilst medications may work for some, it may increase the severity and frequency of tics amongst others. There is no one pill you can pop to get rid of it. Tourettes Syndrome is something that varies significantly in the way it presents itself on an individual scale, and even on a day-to-day basis. Tourettes Syndrome is truly a creative neuroatypicality, and I believe it can offer boundless insights into the study of space, place and the human body within the field of cultural geography.

I’d love to hear your thoughts on this. Do you consider Tourettes Syndrome and it’s associated tics as creative? If you are tourettic, what medications have you tried? How have conversations with others gone when you’ve discussed medication and TS? I’m sure I’ll publish a post at some point considering creativity and TS in a lot more detail at some point, but I’d love to hear others’ opinions on this!

3 REASONS WE NEED TOURETTE SYNDROME AWARENESS MONTH

So for those of you who may not know, TS Awareness Month is from 15th of May until 15th of June. A few people have genuinely asked – from a place of good heart I’m sure – why we need TS Awareness Month. Here are a few reasons:

1. Misrepresentation

As you read more and more of these posts, you’ll realise that misrepresentation is a recurring theme. The media portray it as a ‘swearing disease’, charitable organisations argue that only children can have it, and medical professionals even suggest that disciplining an individual for ticcing will make them stop. From personal experience, all three of these things are not the case. Tourettes Syndrome is a hyper-individualised condition, that affects the body and manifests itself in such a huge variety of ways, even on an individual scale. From my research, doctors have said it’s a pain to diagnose precisely because of this. Tourettes Awareness Month is vital in combatting these incorrect narratives and representations of TS. There’s power in numbers. The more people sharing their own truths, the more people will begin to realise the extent of TS’ individuality.

2. Coming Out

Many live in fear that announcing that they are tourettic may negatively influence their lives, and this can be largely due to the stigmas that arise as a result of mass-misrepresentation. Through my research and through previous personal experience I have met many people who live a double life of sorts, spending all day trying to suppress their tics and then completely exploding once they return home from work or school. However, I think that TS Awareness Month is the perfect time to make it known. It just makes sense to let people know about your Tourettes during the month solely dedicated to it’s awareness. Yes, it feels like the most awkward thing in the world. No, you’re not better off suppressing. Let loose. And even if you do decide to continue to hide your neuroatypical nature, just please let your school or college or workplace know about it. People are out to help you, find somebody who you trust and let them know. Believe me, it does wonders.

3. Encouraging Community

In my next post I’ll be discussing this a little more, but one huge thing I’ve found is that having TS can feel like the most isolating thing in the world. You feel as if no one understands you, but then so many of us stay as far away from other people with tourettes because we’re scared about having our tics triggered. It’s this weird and vicious cycle that just continues to increase the extent to which you feel isolated. If you have TS, definitely think about joining our online community/safespace dedicated for UK adults with Tourettes. If you’re from outside of the UK there’s a bunch of other groups available, so feel free to get in touch and I can set you up into a good one! If you know someone who has TS, why not send them in the group’s direction also? It’s a great way to share your experiences and an easy way to feel like a part of a wider community without the worry of being triggered by tics. For me, it was a nice stepping stone allowing me to feel confident enough to meet other tourettics face-to-face.

If you have any other reasons you think TS Awareness Month should exist, do let me know – as always I love to hear people’s thoughts! If you’d like to support those with TS, be sure to ‘go teal’ for TS to share awareness. Feel free to share any of my resources if you think it may help!

CONTRIBUTIVE TICCING

In my research I have begun to consider the idea of the tic as a contributive act. In one tic diary written by hand, a participant was unable to finish their week of entries due to personal reasons. This one entry featured physical evidence that a tic had occurred during it’s production…

TIC ON PAPER

 

Within academic inquiry, there’s this idea of affect, which is a thing – physical or not – that influence another thing. If affect is something that changes the atmosphere in a given space, then a tic can be considered affective. Within my research, when I’ve been around a group of other Tourettic individuals I’ve often ended up being triggered by others’ tics. Scholars Gregg & Seigworth argue that “affect is found in those intensities that pass body to body” (2010). Have you ever had someone walk really close to you and you feel the urge to move away to give them more space? That’s the perfect example of affect in a normatively scripted body. When an individual has TS, things such as heat, noise, and emotion can subconsciously change the way the body navigates the space it finds itself in. It seems as if the tourettic body could be more sensitive to affect than those that are non-tourettic. Ahmed (2010) states that affect is a bodily evaluation of an occurrence; for tourettics this is out of our control.

 

We see this ‘evaluation’ illustrated in the tic diary entry above. The scribbles that remain following the tic results in the author changing the way they write; their navigation of the blank piece of paper changes – it is no longer blank. The phrase “tic, oops” is written small enough and well within the frame of sorts that was created by the tic. It’s a natural thing. If you see lines on a piece of paper, you naturally write along them. The same principle applies in space. Just as you might move out of the way of someone passing by, or drive on one side of the lines on a road, if a door is being held open for you at the end of a corridor you might be inclined to walk at a faster pace in order to ensure the individual holding the door for you isn’t waiting too long.

When it comes to TS, I’ve had many experiences – notably on public transport – where I’ve ticced physically or vocally and as a result the others who are within range of noticing the tic will look up if they’re far away, or perhaps they lean or turn away from me if they’re sat within close proximity. It seems that just as tics influence other tics amongst the tourettic community, the bodily movement and experience of the space in question is also altered and affected by a tic. It raises the question of what influence even the mere knowledge of having TS might have in the experience of a variety of spaces. I know I avoid public transport like the plague, because I don’t like the embarrassment of ticcing and seeing people respond harshly. It’s clear to see that tics past, present and still to come have an affective contribution to how people experience specific spaces.

So let me know – what contributions do your tics have on the way you interact with space? Or for those who do not have Tourettes, have you experienced TS before? How did you react? What was the first thing you thought? How did the experience change the rest of the time you occupied the space in question? Let me know in the comments or by dropping me an email!