Disability Pride Month: Common Things I Hear When I Tell People I Have Tourette’s

Photo by Gretchen Dyson on Pexels.com. Also, teal is the official color of Tourette Syndrome Awareness and I thought this was really pretty.

Disability advocacy has become a passion of mine within the past few years, especially after I finally got diagnosed with Tourette’s.  

July is Disability Pride Month, so I’m going to be a little bold today and list common things I hear/experience when I tell people I have TS. 


Before I get further into this, the most important thing to understand is that every case of Tourette’s is different, as are the opinions of each person who has it. I’m not the Ambassador of Tourette’s (yet). Here we go: 


I didn’t know you had Tourette’s! 
Now you do! 


I’ve never met someone with Tourette’s.
You probably have and just didn’t realize it. We’re everywhere, you know. Always watching.

I didn’t even notice your tics!

I pretended they didn’t exist for over a decade, so there might be a reason for that.


I knew you had Tourette’s because I noticed [insert tic or quirk here].
Congrats, you did better than my childhood neurologist. No, really. 


That’s what makes you special!
If you’ve known me for a while, I’ll take the ego boost. I will also take a tiara. However, if you’ve known someone for five minutes, a lot of people feel awkward or infantilized, especially if you don’t have a tiara to give us. 
Here are some neutral responses that should be dandy for anyone: 


Gotcha, thanks for letting me know!

I’ve never met someone with Tourette’s. Is there anything I need to know that could be helpful? 


It’s not as bad as other people’s TS or as bad as having [insert other disability/condition here]. 
That may be true, but I didn’t tell you I have TS to get an assessment of how severe is severe enough to count as TS or a disability in the first place. I’m telling you to give you a heads up that if I make a face at you or twitch while I’m listening to you, it’s nothing personal. I can’t tell you how many people I’ve come across that also have TS that you wouldn’t guess (including myself) would have it because they’re able to keep their tics under control, but still need support in same way or another. This also perpetuates the idea that a Tourette’s diagnosis only applies to those with more frequent or severe tics. It is much more common than you would think, and playing gatekeeper with what a disability is “supposed” to look like harms everyone and makes them reluctant to get the help they need. 


Can I see your tics?
Sure, whenever they decide to make an appearance. You can preorder tickets for $5 each. 


In all seriousness, some people don’t want to tic in front of others, and we’re not zoo animals, so don’t try to force anyone to tic in front of you. 


*Intense staring, waiting for me to tic*
I feel like every animal featured on Tiger King when you do this. They didn’t have a good time, and I’m not either. 


Do people/students make fun of you?
I mean, maybe. But that’s not really my problem. For the most part, people are just interested in knowing more about it and I’m always happy to answer questions. I will also say being upfront with it has been very beneficial when it comes to students’ trust, especially if they have disabilities, because they know that I understand what it’s like to experience similar challenges. 


As for the more negative things, I tend to hear lazy jokes or stereotypes from people in casual conversation, both from younger kids to adults. They may flail around, shake, or do something else ridiculous and go “HaHa i HaVe ToUrEtTe’s teeHEE!!!!” as I stand perfectly still and quiet right next to them, not suspecting that someone with Tourette’s could look like me. I like to pretend I’m on The Office and smirk or raise an eyebrow at the camera. 


Wow I wish I had Tourette’s so I could cuss and scream all of the time with no consequences!
If you look up any story of someone with coprophilia or copropraxia, they’re often misunderstood and berated in public, so the idea that there aren’t any consequences is incredibly ignorant. If South Park can explain this accurately, you really don’t have much of an excuse.


Why can’t you just get it cured?
There is currently no cure for Tourette’s. Plenty of treatments like regular exercise and a diet that is mindful of tic triggers make things perfectly manageable for the rest of your life, but no, the sketchy smoothie recipe you found online isn’t a cure. 


Sometimes my eye twitches, do I have Tourette’s?
I don’t know, I’m not a doctor. 


You shouldn’t be telling people that you have Tourette’s because it’s none of their business. 
It’s not really your business to tell me how I should experience or talk about Tourette’s. People are allowed to be as quiet or as open about their experiences with disability as they want to be. I do this because I find more benefit in being open about it than not. This is not true for everyone, so be respectful of people’s boundaries. 


I had a question about my family member’s/friend’s disability and they seemed offended/angry that I asked them a question. But it’s just a question! Why can’t they be like you? 
Refer to the answer above. Boundary pushing isn’t okay. If they want to share it with you, let them. Otherwise if they decline to answer those kinds of questions, let it be. This applies to a lot of situations, by the way. 


You don’t actually have Tourette’s, you’re just lazy and want to be able to use it as an excuse to not do anything!
Some of the hardest working and successful people I know have documented disabilities, and make ZERO excuses, so I hardly see how reasonable accommodations are an attack on your own perceived superior personal work ethic. 


Just because you think asking for help makes someone freeloader or that it’s a “Get Out of Jail Free” card doesn’t mean it actually is. Sometimes my tics or comorbid conditions make things difficult, and I’ve had to learn the hard way that I sometimes need help. So don’t make it harder for others like me to ask for help or to try and face a challenging condition alone.

Also, I got a graduate degree at 22. I had to do a lot for that, including relearning 6th grade math for a test to even get into graduate school.

Wanna learn more about Tourette Syndrome or want to donate to further research the condition? Check out the Tourette Association of America website.


Books: Authentic Experiences of Disability in Young Adult Literature

Photo by Anna Shvets on Pexels.com

*Note: This piece first appeared in The Handy, Uncapped Pen in 2018.

It may not be hard to find literature featuring characters with disabilities, but it can be difficult to find good literature portraying disabled characters. After all, if society still rampantly promotes ableism, its presence in literature and pop culture are not too far behind. From problematic classics such as Of Mice and Men and Frankenstein to modern books such as Me Before You, the availability of inauthentic experiences with disabilities is unfortunately higher than more accurate portrayals of disabilities. In an effort to promote more diverse and authentic texts about disability, particularly in young adult literature, I wanted to examine three young adult novels featuring protagonists with disabilities: On The Edge of Gone by Corinne Duyvis, Wonderstruck by Brian Selznick, and The Mind’s Eye by K.C. Finn.

On the edge of gone by corinne duyvis

Image Courtesy of Amulet Books

Duyvis’ On The Edge of Gone is an incredibly diverse science fiction piece featuring a main character who is biracial and autistic. In a dystopian society, Denise must prove her own worth to the inhabitants of a generation ship leaving a shattered Earth. The book explores how people are classified as “useful” or “valuable” in society, and people who are disabled or neurodivergent are typically cast aside because they do not possess neurotypical or able-bodied traits. As opposed to many novels with autistic characters, the plot is advanced by actual events or other characters as opposed to the character’s autism.  Instead, Denise must keep track of her mother, who is an addict, and must find her trans sister Iris, all while trying to prove she is worth saving.
       
The author is also autistic, making the authenticity of the experiences Denise has in the book more reliable. But the humility of the author is also key to the novel’s appeal. In an interview with Disability in Kid Lit (2016), Duyvis noted her own tendencies to place autistic tendencies in the novel without a clear explanation of why Denise felt a certain way. On The Edge of Gone is also quick to show that while Denise is autistic and suffers from severe anxiety, she must develop her own coping mechanisms in order to survive.
     
Denise has a decent grip on her coping skills and built-up tolerance to less-than-understanding people in her life, which is why she acts more maturely and sensible than her own mother, who is shown to be selfish and irresponsible on more than one occasion. The beginning of the book (2016) shows her mother wasting the time they have left to get to their pre-approved shelters to stall for Iris as Denise urges for them to leave and get to shelter before it is too late (Duyvis, pg. 10) . When her mother is kicked off of the generation ship, she tries to guilt Denise into smuggling her back on board without taking any time to consider how it puts both Iris and Denise at risk of losing their own resources (Duyvis, 2016, pg. 222) . Denise’s narrative is a much different approach than what many see in books with autistic characters who are often cast as burdens on their families and society. Because of the stigma of autism, Denise has long had to adapt to neurotypical people around her to blend with the world around her.

wonderstruck by brian selznick

Image Courtesy of Scholastic Press

While Duyvis has first-hand experience with living with neurodivergence, many authors attempt to portray disabilities without the same personal experiences or knowledge.  Though Selznick does not have firsthand experience with deafness, he manages to create a very thoughtful literary experience reflecting the lives of people in the deaf community with extensive research. What results is Wonderstruck, a novel and graphic novel cross-over that touches on many important themes and topics: disability, grief, collections, visual aids, and many more. The novel switches between two characters’ stories: Ben and Rose’s. Ben is a boy living in Gunflint Lake, Minnesota in 1977 while Rose is a girl living in Hoboken, New Jersey in 1927. Both characters are deaf and must navigate through a world that does not accommodate their needs, but insists on as much conformity to able-bodied culture as possible. Wonderstruck switches between the 50 year period with two distinct but intertwined stories, both with the same surprising amount of obstacles related to their deafness.
     
Collections are also shown to be a major topic in Wonderstruck. Ben’s mother was a librarian and he keeps old trinkets of hers in a wood-carved box. He carries them around with him, which represents who he is and where he is from without writing or speaking about it. Rose collected pictures and newspaper clippings of her mother in scrapbooks and made many skyscrapers out of paper to bring an inaccessible city directly to her (Selznick, 2011, p. 38-39). Like Ben, Rose uses visual expression and symbols to communicate with others, even when they want her to use a method that is more convenient for someone else. Both Ben and Rose are connected to the Natural History Museum, both through familial ties as well as a shared joy of seeing information presented in a way that is accessible for both of them. Themed exhibits cluster related information and objects together the same way Ben and Rose collect their own information.
   
Wonderstruck does a particularly good job with demonstrating how advancements in technology are not always the best means of assisting people with disabilities. It also features a significant scene where technology sets Rose’s character back. In order to “spend time” with her mother Lillian Mayhew, Rose goes to the movie theater to see her silent films. To Rose’s horror, the movie theater is about to install “Talkie” equipment, which enables movies to be both seen and heard without the supposed interruption of word cards on the screen (Selznick, 2011, p. 142). For people who can hear, this is considered advancement in innovation. To Rose, it is a shocking setback that not only further isolates herself from her absent actress mother, but at chances to enjoy activities that people who are not deaf can as well. Another way Rose is pressured into blending in with people who are not deaf is through lip-reading. Rose hates being pressured into learning how to read lips, and defiantly makes another skyscraper out of her lip-reading curriculum book, a rejection of the standards that people with hearing place on people who are deaf (Selznick, 2011, p. 191). Like Duyvis’ book, Wonderstruck challenges what it truly means to be disabled, demonstrating a wide variety of ways disabled people cope with a lack of accommodations from a young age.

the mind’s eye by k.c. finn

Image Courtesy of Clean Teen Publishing

My quest to find more books similar to Duyvis’ and Selznick’s was harder than expected, even with my specific calls and searches for these type of narratives. I would often find plenty of books featuring characters with disabilities, but were riddled with ableism. Books that had ableist narratives were — surprise, surprise — not written by authors who have first-hand experience with the disability they are writing about. Finally, I found The Mind’s Eye. Labeled as a “paranormal romance”, it stars Kit Cavendish, a girl living in 1940 sent to live in Wales during World War II. Kit possesses telepathic powers but is also a wheelchair-user due to M.E. / C. F. S., a neurological condition that causes pain, fatigue, and sometimes paralysis. Her powers lead her to a boy in Oslo named Henri, who is attempting to escape from Nazi occupation in his village. It is the first book in a series (the SYNSK series) written by UK author K.C. Finn (2017), an author who knows about ableism in young adult literature all too well.
     
“It irritates me when you do find characters with disabilities are there because it’s a gimmick. It’s a hindrance and it is never to their advantage,” she told me. I was pleased to find that Kit’s powers were instead genetic and were in no way connected to her condition. In later chapters, it is revealed both of her parents as well as her brother possess the same telepathic abilities. Finn also does not dwell on Kit’s character for the series, but instead features another member of the family for each book, including her younger brother Leighton. In The Mind’s Eye, we are first introduced to the family’s powers while also witnessing Kit’s grueling rehabilitation process for her paralysis. While Kit’s condition is a large factor in the book, it is not the driving force for the events that happened. Instead, the driving factors were the intelligence she picked up through her telepathy, creating relationships with the rest of her safe house family at Ty Gwyn, and helping Henri escape, and the war itself.
     
When speaking with Finn (2017), she made it clear that the importance of having a strong connection to a disability before writing about it. “When it comes to disability and diversity, the most important thing to me is that when writing about those topics is that comes from somewhere real. It’s best to have real personal experience of the disability or have someone close to you in your life with the condition.” That is what makes finding good narratives on disability difficult; people often want to “help” by writing an inspirational story about someone with a disability without consulting someone who actually has the disability. 

Though all three books featured have protagonists with very different disabilities, all three bring accurate narratives to what having a disability is actually like while maintaining a firm sense of humanity.

Bibliography

Bibliography·         

-Ada Hoffmann, Jessica Walton and Corinne Duyvis. (2016, March 24). Interview with Corinne Duyvis about Otherbound and On the Edge of Gone. Retrieved December 10, 2017, from http://disabilityinkidlit.com/2016/03/24/interview-with-corinne-duyvis-about-otherbound-and-on-the-edge-of-gone/·        

-Duyvis, C. (2016). On the Edge of Gone. New York: Amulet Books.·         

-Finn, K. C. (2017, December 8). Skype Personal Interview.·         

-Finn, K. C. (2015) . The Mind’s Eye. The Colony, TX: Clean Teen Publishing.·         

-Selznick, B. (2011). Wonderstruck. New York: Scholastic Press.


       

One Thing to Keep from the Pandemic for an Accessible World? Virtual Events, of Course!

Photo by Julia M Cameron on Pexels.com

As someone with Tourette’s and several other comorbid conditions, I was finally able to attend the Tourette Syndrome conference in both 2020 and 2021. Normally it is only held in Minneapolis, but thanks to efforts and sponsorships to have the event completely online, I could attend from the comfort of my own home. I could hear and watch a variety of presenters on any topic I wanted. No plane tickets, no conference fees, and plenty of panels to choose from that pertained to my specific experiences. 

While the pandemic made traditional travel impossible for many, it opened a new world for me thanks to an increase in virtual events. The pandemic has also made it possible to not have to come up with excuses for why traveling is so difficult for me. Very frankly, I rarely tell people about my agoraphobia. For one thing, many people don’t understand the concept of being deathly afraid of being in an environment out of your control (such as most of the planet). I also don’t like recalling the incident that first made me agoraphobic: a trip to New York City in 8th grade involving a traumatic, severe panic attack lasting over 6 hours. 

Growing up, I at least could use the default excuse of “my parents won’t let me.” As an adult, my go-to option is normally being too busy and not having the money to travel. Both are technically true: as an educator I need to put in a good deal of work into ensuring my students are understanding the content they need and as a writer I devote a good deal of time to my projects. Neither of these pursuits leave much room for spare cash, especially if I might be spending money on a trip that may end up being a distressing, awful experience. 

As an agoraphobe, I always consider the following: 

  1. Am I allowed to have a trusted person come with me? As a follow-up, will they be able to come with me so I have someone who can bring me back to reality if I’m having a panic, anxiety, or tic attack?
  2. Is there a place to escape to at the event or other location if it is overwhelmingly crowded? 
  3. Do I have to buy a plane ticket?
  4. If I have to buy a plane ticket, will I have to pay a copay just to get my doctor to give me stronger anti-anxiety medication to avoid an embarrassing and terrifying display on the plane?
  5. If my anxiety at my destination is unbearable, will I need to go to the ER and pay for that too? 

While I have made significant progress to overcome my phobia, it doesn’t mean that I’ve totally recovered. Like many with phobias and mental illness, I sometimes “relapse”. Part of this is the pressure to travel as much as I can, or I’ll “limit myself”. This was further perpetuated by a distant family member who told me I, at age 16, was limiting my potential because I admitted how deathly afraid I am of planes. This only made my anxiety worse, as it placed the blame solely on my weaknesses and fears; I was limiting myself, I was already a failure for not “overcoming” my struggles as opposed to giving myself grace and patience to recover from an experience that was traumatic for me. 

When society puts travel on a pedestal as the ultimate sign of a successful life and shuns those who do not actively pursue it, it ignores the realities of citizens who have many legitimate reasons to not travel, especially those with disabilities. Around 25.5 million people in the US alone are reported to have travel-limiting disabilities. Whether a disability is mental, physical, or both, it shouldn’t be seen as unreasonable to allow disabled people to have accommodations or alternatives, especially when it is to access information about their own condition.

That isn’t to say that every person who wants to travel in order to have a fulfilling life is ableist, but looking down on others for not being able to travel due to mental or physical illness most certainly is. While virtual events also need significant improvements to give a fully accessible experience, even having the option to attend an event virtually is an opportunity for someone to engage with something or someone they never could before. 

Seeking Interviewees for a New Blog Series on Disabled Artists!

Deep-skinned, femme-presenting person's hands with a book in Braille.

After writing a piece for Next Avenue about the power of artistic expression in the disabled community, I’ve been wanting to have more conversations similar to the ones I had with the artists at the Interact Center for Visual and Performing Arts. So why not do it?

I’m launching a new interview series on my blog to include perspectives of disabled artists from all backgrounds. Visible and “invisible” disabilities, those who use identity-first or person-first language, full-time or part-time creators, all are welcome. BIPOC and LGBTQ+ voices are strongly encouraged to participate!

how do i participate?

Here’s the deal:

  • Using the contact form or emailing me directly at gales.gretchen@gmail.com, let me know the following:
    • Some background about who you are, the name of your disability should you wish to disclose it, if you prefer identity-first or person-first language, and your mode of creative expression (painter, writer, graphic designer, etc.).
    • A headshot or a picture of your visual work to include in the interview.
    • Links to websites, social media, blogs, or other places to learn more about you.
    • Any other information that may be relevant.
    • All interviews will occur over email unless we arrange the interview in some other form.
  • Unfortunately, I cannot afford to pay participants. You are welcome, however, to include links to your Venmo, Cash App, Ko-Fi, or other apps to spread the word about how people can support your work. This also includes links to online stores or social media.
  • If any accommodations are necessary, please let me know. I’m working on making the blog as accessible as possible and hope to make it more user-friendly for everyone in the future.
  • Don’t worry if I don’t reach out right away! More than likely I just have a backlog of interested participants or a backlog of emails in general. Please be patient.
  • Send any additional questions through the same contact form!

I look forward to creating another outlet for activism and expression!