Daniel has OCD…except he doesn’t know. He just knows about the “zaps” and other sensations he feels that compel him to flicker the lights or count his steps. He also knows he doesn’t want to be seen as anything other than a normal kid, and attempts to distance himself from anything that could make him look weird. That means no matter what, he never tells his family or his friends what he’s really thinking. That’s one of several conflicts in Wesley King’s OCDaniel, a middle grade novel about a quirky kid with a bunch of normal kid problems and a big secret.
This isn’t unusual for someone with OCD. Despite showing OCD traits as a child, it wasn’t until my 20’s until I got a firm diagnosis of OCD, similar to King’s own story he includes at the end of the book. Many people with OCD hide their symptoms, which is major reason why this book is so special.
But don’t be fooled into thinking King’s book is only about OCD! Daniel’s story is interwoven with the pressures of being the water boy on his school’s football team, figuring out girls, and a mysterious letter he receives from a “Fellow Star Child”. It’s also funny and charming, the title cover’s Q-Tip a nod to how Daniel is described by his coach.
For those looking for an empathetic and adventurous middle grade novel, OCDaniel should be on your to-read list. More ahead, but beware: spoilers are in the next section!
Daniel’s perception of normal is challenged when he receives a note from a “Fellow Star Child”, who turns out to be the girl others at his school call “Psycho Sara”. Sara has anxiety and schizophrenia and barely talks, often seen alone or with a TA. But Sara recognizes that Daniel is different. Once Daniel figures out the author of the note is Sara, she asks him to help her find out why her father disappeared. Daniel ends up being one of the only people she talks to, recognizing his OCD early in the novel. She doesn’t tell him it’s OCD until much later, finally giving Daniel answers about his quirks.
Daniel also grapples with the relief of knowing that OCD is a condition shared by many and the stigma of being seen as “crazy”. His friendship with Sara challenges his perception of normalcy and the value of being himself. At the same time, Daniel juggles being temporarily promoted to kicker on the football team, his crush on Raya Singh (and maybe even Sara), writing his own book, and investigating the alleged murder of Sara’s father at the hands of her mother’s boyfriend.
His friendship with Sara helps him to embrace his true personality, someone who loves writing and talking about global politics. Daniel realizes he doesn’t need to “play it cool” anymore.
Daniel also helps Sara discover what her mother and her boyfriend have been hiding from her: her father died from an overdose, partially spurred on by his own mental illness that is similar to Sara’s.
Despite the heavy topics, King writes a very real depiction of two characters struggling with their own battles and embracing their strengths at once. The mystery and romance storylines also keeps readers engaged up until the very end, when Daniel embraces his new nickname: OCDaniel.
In 2020, a prequel about Sara called Sara and the Search for Normal was published.
Obsessive-compulsive disorder (OCD) affects 1.2% of the U.S. population and around 2% globally. Many people associate OCD with being organized and excessive cleanliness. In reality, OCD is categorized by obsessive thoughts and behaviors that can manifest in many different ways. For me, I have on on-and-off again fear of death and compulsions related to avoiding death. (I talk a lot about this in my essay in The Ear.) For others, this could mean unplugging every device from an outlet before leaving the house to prevent it from burning down.
No matter what it looks like, listening to the experiences of people with OCD is essential for understanding just how difficult the condition can be. Below is a growing list of books written by authors with OCD about OCD. The latest version of this blog was updated in June of 2022.
Nonfiction and Memoir
The MAn Who Couldn’t Stop by David Adam
Part memoir, part scientific investigation, Adam uses his own experiences with OCD (over 20 years of it) and stories from around the world, Adam bravely explores the darkest parts of our mind and questions what exactly defines mental illness.
Under My Bed and Other Essays by Jodi Keisner
While not explicitly about OCD, Keisner’s essay collection addresses the roots of women’s fears, starting with her own ritualistic behaviors. The essays are a combo of both literary and experimental pieces for a unique reading experience. You can preorder the paperback version now through the University of Nebraska Press website.
Because We Are Bad: OCD and a Girl Lost in Thought By Lily Bailey
A lyrical memoir on Bailey’s experiences throughout childhood with OCD. Convinced from a young age she was capable of murdering others with “incorrect” thoughts and excessive, repetitive routines, the memoir progresses into a story of persistence and recovery as Bailey ages. This book is often recommended for fans of Girl, Interrupted and Brain on Fire.
Obsessed: A Memoir of My Life with OCD by Allison Britz
This memoir is perfect for a young adult, Britz setting the stage during her sophomore year of high school. After a dream convinces her that she will get brain cancer, she does everything in her power to prevent it. Soon, her avoidant behaviors prevented her from stepping on cracks and touching her own personal belongings. This memoir tells an interesting perspective about how a girl who “has it all” had to fight to get her life back and save her future plans from disintegrating. The book acknowledges that finding help and healing are very possible.
Living in the Brambles: A little book of poetry about my personal experiences with OCD, Depression, and Anxiety by Suzi French
This debut, multi-faceted collection from French includes both form poetry such as haiku and traditional rhyming poetry. A quarter of the sales go towards MIND and OCD UK.
Captive: A Poetry Collection on OCD, Psychosis, and Brain Inflammation by Madeline Dyer
Dyer’s OCD was a result of Autoimmune Basal Ganglia Encephalitis, an unusual disease that causes brain inflammation. The collection details her time in therapy while experiencing both psychosis and OCD. While it is a collection of poetry, this can also count as a poetic memoir about Dyer’s experiences.
Turtles All the Way Down by John Green
John Green is widely-known for his YA romance and adventure novels alongside his quirky YouTube and TikTok content. Turtles All the Way Down has received a lot of positive praise for its portrayal of OCD and has connected with many YA readers across the globe. Like all of Green’s books, the premise rides on a grand adventure and once-in-a-lifetime event. This time, it’s a billionaire and a grand cash prize. The novel is a perfect exploration of OCD as well as the nature of relationships when suffering from the condition.
OCDaniel by Wesley King
King wrote OCDaniel based off of his own childhood experiences with OCD. As a result, the book is an empathetic look at a 13 year-old keeping his OCD a secret for as long as he can. With the help of a new friend, he becomes more confident in himself. Though OCD symptoms can manifest as early as 7 or 8, King notes in his interview with the CBC that he received pushback about talking about OCD with younger and middle grade children for being “too early” for them to know about mental illness. I don’t know about you, but being told I shouldn’t read something makes me want to read it more. As someone with OCD, I can assure you I would have benefitted a lot more from knowing about OCD earlier than later. So make sure you pick up this book for yourself and any middle graders in your life.
Check Mates: A Collection of Fiction, Poetry, and Artwork About Obsessive-Compulsive Disorder by PEople with OCD
A true representation of OCD means acknowledging that no one case is the same. This anthology features creatives with OCD and their work about OCD. There are a variety of pieces throughout the book to explore the condition, so if you’re looking for broad representation, this collection may be the answer.
Despite making up about 25 percent of the U.S. population and 15 percent of the world population, disabled and neurodivergent voices are often excluded from mainstream media. Or if they are included, it’s specifically for themed months or timely topics that will bring more attention to the subject…at least until it isn’t trendy anymore.
Having space for marginalized voices is essential. Navigating the world with a disability can be tough, and without a sense of community, it’s a lonely place. That’s why having specific spaces for disability-centered dialogue and art should be a top priority. These are just a few publications for disabled and neurodivergent voices.
Keep checking back for updates and additions. (Last updated on 2/2/2022.)
With support from Syracuse University, Wordgathering: A Journal of Disability Poetry and Literature is available as an Open Access and digital publication. Issues are released quarterly and all submissions are free. Their primary approach is a “cross-disabilities” method, acknowledging the wide lens of disability experiences. While they love poetry, they also take prose and nonfiction entries as well. Wordgathering asks that you query before sending book reviews or interviews.
Both a blog and a great hub for disability-related resources, the Handy, Uncapped Pen accepts submissions of poetry and prose. They require that all submissions be from those who identify as disabled or neurodivergent. The Handy, Uncapped Pen has two reading periods a year: February 1st through April 30th and August 1st through October 31st. They also love list-based articles, but don’t get enough of them.
Maybe this is your chance to write a brilliant round-up of books? No matter what you submit, they pay $3 for accepted submissions.
Focused on mostly poetry and short prose on mental illness, neurodivergence, and suicide prevention, Serotonin welcomes work from these perspectives. Their masthead is run by those who also identify with one of the three topics. All of their work is posted online.
Submissions should include up to three poems (up to 20 lines each) or one piece of prose under 500 words. Authors are paid $5 per piece. Donations are welcome to help support their mission with their Tip Jar option.
What sets apart Monstering Magazine is that they focus on those who are both disabled and experience gender-oppression (women, non-binary, agender, gender-nonconforming, transgender, and gender-expansive people). They take poetry, prose, and art submissions that honor their mission of loving and embracing the idea of the monster or the unknowable, often coded as disabled voices throughout media and history.
Both a nonprofit magazine and small press, Blanket Sea prioritizes work by those who are chronically or mentally ill, including neurodivergent and disabled voices. Blanket Sea was founded by Alana Saltz and all of the editors have personal experiences with chronic or mental illness. Along with their rolling poetry, art, and prose posts, their microchap series chooses several manuscripts to publish as free ebooks with the option of donations.
The site offers all of its content for free, but is willing to take donations through their Ko-Fi to help offset the cost of running the site.
A brand new magazine launched in 2021, Wishbone Words was founded by Hollie Warren and was designed to amplify disabled and chronically ill writers. Their goal to achieve more compassion and understanding in the world, and with the affordable price point, you can enjoy poetry, prose, and other arts from writers around the world.
Based out of the United Kingdom and the state of Maine, SICKaims to challenge misconceptions and stereotypes of those who are chronically ill or disabled. They accept essays, features, visual art, poetry, and other media. They also accept submissions from those whose conditions are considered in remission. Payments are made in GBP, so please anticipate this if you are located outside of the EU.
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.
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
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
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
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.
Before I begin, I think it’s good to distinguish identity-first and person-first language…
What is the difference between identity-first language and person-first language?
Identity-first language refers to a person as disabled or some other direct way of acknowledging a disability of some sort. Person-first language is normally phrased as “person with Tourette’s” or “person who has a disability”. There are many reasons why people would choose one or the other. The main criticism of identity-first language is that it is dehumanizing or puts the disability at the front as opposed to the human with the disability. The main criticism of person-first language is that it fails to acknowledge the difficulties or realities of those with disabilities at all.
A pitfall I see with many well-meaning but nondisabled advocates is speaking on behalf of others without taking their opinions into consideration or researching what language might be best for them. For those who identify as neurodivergent (ADHD, autism, sometimes Tourette’s, etc.), many choose identity-first language to take pride in their differences. For those with more visible disabilities, they may want person-first. It truly depends on many factors since 26% of the US population has some sort of disability and the circumstances or stigmas behind them differ.
With Tourette Syndrome, I see a lot of people using person-first language, especially in posts from the Tourette Association of America. I think a lot of this has to do with the severity and visibility of people’s tics being quite visible. Because the disorder is so stigmatized, it is already hard to be treated as human beings as opposed to slapstick comedy routines or unfortunately, demon-possessed.
My Roadblock using identity-first language
Early last year, I published an article about an inclusive art center using identity-first language. When my article went live and was posted to various social media platforms, I expected at least a few negative comments. One commenter mentioned an interviewee’s tie was too short. For a while, I was pleasantly surprised that was the sole complaint.
But that’s when I saw it.
“The one thing I will insist on is the person is an artist, who just happens to have a disability, never a disabled artist,” commented an older gentleman, who was involved with an inclusive arts center as well. To what capacity, I wasn’t certain, but I felt compelled to respond to him — politely of course — as to why I chose the language.
“I’m the writer of this piece. I am actually disabled as well, and many of us prefer identity-first language as opposed to person-first language because it is a core part of our identity. This isn’t true for everyone, but many of my disabled friends would also insist upon the same name.”
Others who identified with the language also chimed in to agree and share their own thoughts about how it felt right for them. His response?
“Sorry, but I too have a disability and my fellow artists share my thoughts. You create art, you are an artist. An artist who just happens to be what we are. If you want to make money off of pity, then by all means, do it.”
I was taken aback by his statement. When I discovered more about disability rights, reading about identity-first language helped me to reclaim something about myself I had to keep hidden for so long. The idea that my use of identity-first language is strictly for pity is not only blatantly false, but hurtful. Finding identity-first language empowered me after years of being told to hide a big part of myself: my Tourette Syndrome.
Why tourette syndrome is an important part of my identity
Approximately 50% of Touretters are not diagnosed until adulthood. I was one of them, wondering what exactly was “wrong” was me.
I challenged his thinking. “I understand to an extent, but as a movement, we don’t see identity-first language as pity, but for understanding the normal differences between us, not a profit gimmick.”
Though he never responded to my follow-up, I questioned my own reasons for using identity-first language. Was I really seeking pity? Not a chance — ever since I was a kid, pity has made me feel uncomfortable. When I tell people I have Tourette’s and they respond by shifting uncomfortably and muttering “Aw, I’m sorry,” it makes me feel icky. Identity-first language allows me to own my identity the way I wish after years of being denied the opportunity.
I hardly speak for every disabled person about what they should be called. Person-first or identity-first language are both valid ways of regarding someone with a disability…as long as they are comfortable with it. Different people will want to be addressed and referred to in different ways. A common mistake that does more harm than good is to speak for another person as opposed to honoring their wishes, and that includes anyone, including those with disabilities.
More Information about identity-first and person-first language
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:
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?
Is there a place to escape to at the event or other location if it is overwhelmingly crowded?
Do I have to buy a plane ticket?
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?
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.
Mae Thorn is the author of several historical fiction and romance novels, including Poisonous Passions, Briarwyck, Wyvern, and an upcoming #OwnVoices novel Without Words. The manuscripts are currently pending homes and are out on submission. Diagnosed with Treft Syndrome, a rare genetic mutation that causes vision, hearing, and balance difficulties, Thorn identifies as hard of hearing.
In today’s post, we talk about the importance of never giving up on writing, the fascinating genres included in speculative fiction, and actually finishing a novel during NaNoWriMo.
Recently on your blog, you talked about perseverance and how that was the key to writing your books. Can you give the readers ideas about how to persevere in their own craft?
Perseverance is an everyday practice. You have to get up every morning and do at least one thing to hit your goal. Of course, I did skip days. I had a big mental block last fall, and I found that working through it was the only solution. It takes a lot of baby steps to make a mile.
2. Without Words is an #ownvoices romance and fantasy novel. How does the main character reflect your own journey with accepting hearing loss?
Without Words is very much my story. It goes through the same stages I went through before I accepted my hearing loss. I’ve heard that when you lose your hearing, you go through the stages of grief. Denial, anger, bargaining, depression, and acceptance. My denial lasted the longest. I wrote it as a kind of therapy and venting exercise. My agent is currently looking for a home for Without Words.
3. Your other writings delve into everything from sci-fi, nonfiction, horror, and fantasy. What books and authors inspired your writing style growing up?
I’m a big fan of Jane Austen, and she has inspired my historical romance novels (also waiting for a home). The Mayfair Witches from Anne Rice has also inspired me. Without Words is about witches. I would be remiss if I didn’t mention one of my earliest inspirations, The Hobbit and The Lord of the Rings trilogy. I started writing fantasy shortly after reading Tolkien when I was about 14. Also, I used to read a lot of poetry too. William Blake, Emily Dickinson, and Edgar Allan Poe were some of my favorites.
4. What is some advice you would give to those who want to participate in NaNoWriMo? What kinds of goals do you set during the month?
NaNoWriMo or National Novel Writing Month gives you the goal of writing 50k words in a month, which is basically a short novel. Whether you accomplish the goal or not, it is a good motivator. My best advice is to not look back. Don’t edit and don’t stop. Write every day if you can.
5.What other work do you have planned?
Without Words is meant to be a series following each witch I mention. In the second book, I will tackle my depression and anxiety, which will be a difficult task since I’m still learning to cope with it. Right now, I’m editing my historical romance series to prepare it for publication. It’s a lot of work, but I’m loving it. Being a writer is an ideal job for someone with my disabilities because it gives me the freedom to manage my own time and have my own communication style.
Tamara Kaye Sellman is an author, advocate, and curator of sleep-wellness content. But that just scratches the surface of everything Sellman has accomplished in her life. Her new book Intention Tremor chronicles five years of her experience with multiple sclerosis (MS) with both poetry and nonfiction. Besides releasing a book during a pandemic, Sellman kindly chatted with me about art, advocacy, and everything in between.
1. Your new book Intention Tremor is a hybrid work of creative nonfiction and poetry. How does the hybrid nature of the book convey your message? It does two things, really. I’m a cross-genre, cross-form writer (which means I write poetry, fiction, and nonfiction, and inside those forms, I write in different genres). To write something as intimate as a medical memoir meant I needed to be authentic, and hybrid is the most authentic way I express myself. I am one of those people who has an idea and then let’s the idea choose its form (at least in my creative writing life). So some things I write live in the prose poetry space, others are formal poetry, still others are fragmented essays or brief traditional creative nonfiction forms.
For me to try to pigeonhole every piece in this book to meet a singular formal demand would be, in a way, a kind of lie. That’s not how my mind works, and it made no sense for me to give up that part of my identity to cleave to only poetry or only prose in a collection that’s so personal.
The eclectic nature of hybrids also makes for a fitting metaphor of how the brain works when you have a neurological condition. Brains use neural networks to convey signals, and when there are blocks, these signals are either delayed or aren’t delivered or received at all. Or, if you’re lucky, your brain finds alternate routes (this is what neuroplasticity is all about). So from a sense of form, a book written about a broken brain probably shouldn’t be a neat and tidy one-form expression.
2. When did you first start writing? How has your writing evolved? I wrote my first original sentence on a chalkboard in colored chalk in preschool in 1969. I wrote a lot as a child, reams of penmanship—then notebook—paper created firetraps in my closet (I drew a lot, too). I only used a typewriter in high school for homework, so I used journals and diaries then until I landed my Commodore 64 in the 1980s. Then it was off to the races.
I pursued journalism in college (with a brief spell in creative writing as a minor) so that I could solidify a writing career path. And that’s mostly been my reality: I’ve worked as an editor, publisher, freelance writer, columnist, and writing coach for most of my adult life (my first job in the mid 1980s).
I had always thought I would put off my creative writing until retirement but then I had children and realized that I needed a writing life to be a whole person. I wanted also for my daughters to see I was pursuing something that fed my soul.
In 2012-2013, I went back to school to earn medical credentials in sleep technology and certified sleep health education. My original plan had always been to pursue more science journalism. Having these medical credentials has definitely given me a leg up on that competition. At about the same time, I was diagnosed with MS. While I worked in a lab for 2 years, having MS forced the decision to leave patient-facing shift work, which is not at all agreeable with even the healthiest brains.
Today, I write columns, articles, and posts for various illness communities, specializing in sleep disorders and fatigue. I also write continuing education learning modules in a multimedia format, so I’m still writing and still using my medical credentials in spite of having MS. I also write about MS in a chameleon sort of way: I share my lived experience, but I also write about the disease itself, or news and developments in research, and I write book reviews whenever I can.
I feel I’m now living my best life, the one I decided was right for me at the ripe old age of five years-old.
3. What has it been like hosting a virtual book tour due to the pandemic? What have been some surprising perks or downsides you’ve faced because of the format? It’s really hard. Partly the loss of live events is an emotional blow, as this is my debut book and I have envisioned the dream author party and live readings as part of the celebration of that journey. The pandemic has stolen this from new writers launching books at this time.
I have always prided myself on being an early adopter of new technologies. And that has been the case until these last few years. When MS started messing with my organizational mind, I had to step back a little. There is a kind of overwhelm you get as a person with neurological obstacles—not really a sensory overload, but a screen/technology overload—and the only way around it is to just turn off the computer.
Meanwhile, the pandemic has forced all literary events to the Internet. Plus side: people from all around the world can come to your event. Minus side: all that screen/technology overload is a risky pursuit. I’m dealing with a surge of symptoms that are primarily cognitive that are probably triggered by too much screen time. I also face issues with reading and speech which are magnified in a virtual setting.
I find it easier—but sometimes exhausting—to read live in front of people because at least I can look them in the eyes as I read. Now the only eye I look into is the eyeball-shaped camera on top of my laptop. The book signing line at a live event is a great place to have brief, energizing conversations privately with people who buy your book. After an online reading, there isn’t a chance for these intimate encounters unless they’re done in chat, and that’s not really very intimate, either. And you just don’t sell as many books.
I hope that there will be a hybrid approach to readings after the pandemic is over. I have enjoyed interacting with others in my readings who were never going to go to my readings before because of limitations in geography or physical ability. But I can’t wait to throw some back yard parties in the near future where I can sell my books much more easily without a middleman. And maybe the local booksellers will cut debut writers some slack and welcome them into the fold when it is safe again, even if their pub dates have come and gone. It wasn’t our fault the timing was so bad.
4. How does art empower you? It allows me to own my space in a way that is public, beautiful, and honest. It also gives me tools for articulating my disease, and art connects me with others with similar struggles and interests.
5. What do you wish people understood about MS? They call it the “snowflake disease” because no two cases are alike. I wish people understood that some people end up in wheelchairs with no cognitive dysfunction, while others can walk just fine but struggle with cognitive dysfunction. There are lots of invisible symptoms too. Among mine are chronic tinnitus, IBS, migraines, paresthesia, tremor, muscle weakness, paralyzing spasms of the muscles (especially around my rib cage), and chronic pain. We treat MS with a medication that *maybe* slows down the progression, and we treat symptoms individually. It ends up being a lot of pills and/or shots and/or chemo with side effects. It’s a really complex disorder and that is part of the reason why we don’t have a cure or even a conclusive understanding of what causes it.
All of my proceeds from Intention Tremor‘s sales benefit the Accelerated Cure Project, so sales are a big reason I do any of this. The ACP is there to help MS researchers restart and reclaim their momentum, which has died off (by necessity) because of COVID-19. We need a cure and we need better treatments for our more severely affected members of the MS community. Two hundred new cases of MS are diagnosed every week, pandemic or not. People need help.
Interested in seeing more of Tamara’s work? Follow her through the links below: