Writing Disabled Characters in My Late 30s

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26 minute read

Childhood / Teen / 20s / Early-Mid 30s / Late 30s

In September of 2016, the remains Jacob Wetterling were found.  Jacob was kidnapped from my home state when I was 8 years old.  His disappearance remained a mystery for nearly thirty years.  Every single year, we could count on seeing his mom on the local news, leaving her porch light on for him, so he could see his way home.

In my personal life, too, this would be the year things would come to a head.  Where I would need to think seriously about drawing boundaries and prioritizing my own safety.

As usual, all of these things played a role what I ended up writing that November (and, it would turn out, many Novembers to come...)

In the fall of 2016, the series The Fosters  was on a mid-season break, but looked ready to explore a potential arc involving our favorite character Jesus, and brain injury.  Because of this, my initial idea was to explore that idea myself via a Fosters FanFiction during my 13th NaNo.  But with a couple weeks to spare, I still wasn't fully on board with the idea.

With two weeks to spare, Tara suggested: "What if Jesus gets kidnapped?"

DISUPHERE (Disappear):

Just the previous month, I had dreamed this scenario and told her about it, but I never considered the possibility of actually exploring this concept. in a novel.  But this was the idea I was passionate about, that I wanted to explore.  So, we ended up plotting out this daunting AU idea.  (I say "we" because I needed a lot of help.  Tara, memorably spent three hours making up a timeline of events that chronologized Jesus's escape.)

Jesus:

Jesus was my main character. On The Fosters, it was established already that he had ADHD and Disuphere would put Jesus (and the entire family by extension) in the center of even more trauma.

This first story explores how a child who goes missing for four years and manages to escape and then reintegrate into his family.  So, although the story jumps back in time, in the present, Jesus is sixteen, and has many trauma symptoms. (Mind the TWs.)

Interestingly, both Disuphere and the second story Blink are titles based on Jesus's need to dissociate when under stress.

Francesca:

In season 2 of The Fosters, Lena (one of the moms) was pregnant (because the actress who played her was, as well.)  She carried the baby 20 weeks and then had health problems that led to loss of the baby.  Before that though, Lena and her partner, Stef, had dreamed of their baby.  Had confirmation she would be a biological girl, and even chose a name for her: Francesca.

Because this was an alternate universe, I had a little latitude and I took liberties, tweaking the original story to allow Francesca to be carried long enough that she'd be born and survive.  However, being premature, she had Cerebral Palsy.  Fran's character has been one of my favorites to write.  (Who doesn't love an adorable 4-year-old?)  I really loved being able to positively (for the most part) explore CP.

BLINK:

It was early 2017, when we went home for Easter, trying to balance keeping family ties with maintaining our boundaries and safety.

Camp NaNo was a summer version of NaNoWriMo, and while I was a veteran of the winter competition, I rarely participated in the spring version.  By now, several friends had read Disuphere and were interested in a sequel.  Blink picked up immediately where Disuphere left off.  In many ways it's Disuphere part II.

Having established Jesus and his family's story in the first story.  I now was curious about them venturing out.  How would Jesus cope away from home?  On a family vacation, for example?

And so, I started to write.

Pearl:

A couple days into the writing, Tara suggested a reclusive original character named Pearl.  In her 30's, Pearl was (at this point) the oldest character with a disability I had yet written about.  Also dealing with trauma and, according to Pearl herself, "borderline agoraphobic", Pearl and Jesus meet while the Adams Fosters are on vacation.

Pearl was the very first character I explored in the context of potentially being a mentor - trauma, possible-agoraphobia and all.  And it was so freeing and lovely to explore this complex and imperfect character, and make it clear that she is still able to help others and give sound advice.

This was definitely because I had recently taken on a similar role (in various friendships) and really needed to explore the concept of being a role model.

Pearl was so gloriously human, layered, complex.  I love that she made dog clothes - and had full-on conversations with her fox red lab, Gracie.

THE CROSSING:

By November, 2017, I was planning a different kind of novel.   But mere days into writing this story, it became clear that things at home were no longer safe - had never been safe - not really.

November turned into a month of chaos, of triggers, of unpredictability.

By its end, we were no-contact.

The Crossing was the first one I'd ever written based on a bit of a formula that says a novel has 40 scenes, and three acts.  The theatrical aspects of this storytelling lent perfectly to the introduction of my newest original character.

Dominique:

Twenty-one-year-old Dominique managed to escape from child traffickers, but not without severe burns.  She and Jesus met and formed a tenuous friendship.  Dominique does not tell Jesus that, in order to cope, she made him her invisible friend, knowing he had also been abducted.

Dominique had fascinating coping mechanisms, cosplaying extensively to feel safe around others.  She also loved musicals.  And was trying to find her way toward living on her own.

I wanted a place to exist where people like Dominique (who lived with intense bouts of depression, which made it difficult for her to maintain her space and even her basic needs) could potentially live on her own.  And likewise for Jesus, who, five years after Disuphere and Blink, was just starting out living on his own.

So, I created a way that they could live successfully on their own, supported by their own staff member who is trained to help each resident with whatever they need.

Mariana:

Someone once suggested somewhere that The Fosters storyline with Jesus having a TBI would have been better, had it been Mariana who sustained the injury and that idea has always stuck with me.  As the Disuphere series was an AU, and having wanted to explore brain injury within the context of this universe, I thought, "What if Mariana's had a car accident and come away with a TBI?"

Mariana's now 22, and six months post-TBI, when she and Dominique meet.  (Though we don't delve much into Mariana's injury here, we do hear, courtesy of now 10-year-old Francesca, that things at home are not going well...)

Because so much remained unknown at this time about Mariana's TBI, and because I was still learning about the ways brain injuries can impact people (courtesy of Tara), Mariana is not as well-represented in this story or the next one as I would like, in terms of her brain injury.  But that does get better in coming stories.

SOMEWHERE INSIDE:

By April of 2018, I was fully invested in the Disuphere universe, and I needed an outlet to cope with my ever-evolving family situation.  Over the months I wrote this story, I gradually made more changes in who I allowed in my inner circle.

Each was terrifying.

And I had a lot I needed to process.  Lucky for me, Camp NaNo was there, at the perfect time, allowing me to deal.

Levi:

The idea for original character, Levi, and the story behind Somewhere Inside came just about as suddenly as the character of Pearl did.  One day, about two weeks before Camp NaNo began in April of 2018, the idea for this unfamiliar teenage boy to show up in the Disuphere series.

As it turns out, Levi has a decade of repressed trauma, and his struggle to deal with it in some ways mirrored my own.  In other ways it was entirely unique.  But one of the things I have always loved about writing is being able to give my characters things I did not have: in this case, it was widespread understanding and support.  Writing Levi's struggle to deal with his own trauma helped me with my own in so many ways.

And getting to see all of these characters with disability and / or trauma coming together to spend time with one another was amazing.  Because all of the characters (they call themselves Avoiders - because together they avoid mean people) are hanging out together, I got to explore other important issues: like self-harm and disability, and the need for kids with CP (who can't swim) to have life jackets.

Also, Levi totally has a crush on Mariana, who is still in the midst of recovering from her TBI...but we so rarely see people with disabilities and / or trauma portrayed as desirable, not even as crushworthy, so that was really fun to explore.

FOUND:

By October of 2018, I was so excited to begin the next story in the series, I began a month early.  Little did  I know, I'd spend the next year crafting a single story.

At this point, personally, things were still difficult, but I was starting to get used to the boundaries.  There were still mistakes made.  Moments when panic or trauma surfaced and I reacted in ways that did the opposite of keeping me safe, but I was learning.  And I wanted to be able to find a way to be as honest as I possibly could in conveying my own story, with the help of these characters and this world I'd created.  I needed to give a voice to the way I'd grown up.  To find a way to document my history in a way that didn't feel terrifying.

If I had to pick a favorite story in all of this series, it would definitely be Found.  This is in no small part due to the fact that Tara and I wrote it together. 

Tara wrote the equivalent of about ten chapters, and provided invaluable insight and corrections on Mariana's character throughout the book, bringing the complexity and reality of Mariana's TBI to the forefront, brilliantly highlighting fatigue, aphasia and capacity shifts and so many other things.

Related:  What Is a Capacity Shift and How Does It Relate to Disability?

Found provides an unflinching look at what can go on behind closed doors when nondisabled parents are raising disabled kids.  (Based in part on the egregious disability representation on The Fosters.)  We learn that Francesca (now eleven) is searching for information on who she is, while Mariana comes face to face with previously unknown information about her brain injury.

When it becomes unsafe for Mariana and Francesca to live at home any longer, Jesus and Dominique take them in, while Pearl and Levi travel from out of town. Eventually, Stef and Lena go to a workshop run by disabled people to learn about disability and how to be better parents to Mari and Fran.

By now, both Mari and Fran are beautifully complex and deep.  Their disabilities inform how they move through the world and are big parts of who they are, but they are also more than just that.  Mariana's a fiercely protective older sister and friend who doesn't hesitate to do what's necessary to protect those around her.  Fran is fascinating, too, as she deals with her own internalized ableism, finding positive ways to cope, and all the while she's gloriously eleven, once memorably asking Pearl if she wanted to watch Bird Box or Silence of The Lambs...since Fran was sure they were about animals, and Pearl loved animals.

I love this story so much.  It touches on so many vital issues that are prevalent in the disability community: parents oversharing about their disabled kids online, the high rate of abuse kids with disabilities experience, how important it is for kids with disabilities to have adults in their community to look up to and ask questions to if needed and it introduces so many more disabled characters, definitely my biggest cast of them to date.  Most notably though, there's Rosa.

Rosa:

Rosa is one of several disabled speakers at the workshop Stef and Lena attend.  Like Mariana, Rosa has also survived a TBI.  Rosa is twenty years post-injury, and comes to be a valuable ally and friend to Mariana.

Though we don't see Rosa much outside of a professional setting, we do see that she's a force.  She's wonderfully authentic, protective and loving.  She takes her job seriously and takes no crap from anybody.

She's also layered.  She's not always "on."  She has moments where she falls apart, and we see those, too.  It was important for me to show the different sides of the large cast of disabled speakers at the workshop, but with Rosa, I think, we got the closest to a full picture.

HISTORY:

[Image: Tonia (left) and Tara (right) five days before NaNo, 2019]

In November of 2019, I was thinking a lot about the reality that I would never have full information about my life or background.  That I will always have questions about my past that I have to be okay with just not knowing.

It's for this reason that I chose to tell original character, Paris's, story in History.  Going back in time to various points, I found answers to other characters' pasts.  And though they don't know them, it gave me comfort to create the existence of answers somewhere.

Paris:

Through Paris, I explored for the first time, a nondisabled, and then disabled parent, dealing with eventual chronic lung disease.  It was interesting to see the difference between the way children treated him as a parent and (in Found, for example) the way the parents treated their disabled kids.  It's mentioned in Found, how disabled parents have a kind of implied respect because they are parents, whereas disabled  kids often don't have any respect.

I loved being able to tell the story of a gentle, caring dad.  And though I knew he'd die in the end (because it had been established since Somewhere Inside that he was) telling this story wasn't an instance of a character being better off dead than disabled.

It was a way to bring him back to life.  To make sure his story got told.  And I loved that.

OUT OF THE BLUE:

In April, 2020 I began writing the seventh story in the Disuphere series.  I didn't have plans to do another Camp NaNo story, but Tara mentioned wanting to see all the characters get together and hang out at the cabin again.  From there, I felt a strong sense of, "I miss my characters."

Then real life began to happen.  A sudden loss coupled with the reality of a worldwide pandemic, which made it super necessary to have a distraction / coping mechanism.  We'd been deep in our love of Dear Evan Hansen for a few months (had even found the novel.)  Since that color scheme is very blue, and since they'd be traveling (going "out") Out of the Blue seemed an appropriate title.  (It also spoke to the suddenness of the loss we experienced.

It was so helpful to be able to create a world without a pandemic (thank goodness for AUs) where friends can still hang out.  This story gave us the opportunity to explore selective mutism on a real scale as well as intricacies of ableism among friends and just...a place where disabled people can live their everyday lives and tropes can be subverted.

Oliver:

First introduced in Found, Oliver's a big part of why Out of the Blue exists.  

It meant a lot to me to have a second character living with a brain injury and to see how this community helps each other.  He's there, not only for Mariana, but for Fran as well.

The Return of Elise and Jess:

Introduced first in 2004 (Elise) and 2007 (Jess), it was an amazing feeling to bring them back in this story and connect them to Mariana.  Reconnecting with my original characters felt a bit like coming home.  And getting to "check back in with them after so many years was wonderful.

WINDOWS:

The idea for the eighth story in the Disuphere series came to me this past summer, courtesy of a friend, who requested Fran going to summer camp as a shorter story.  It was something I wanted to explore in longer form, so I put it on hold until I could properly explore it during NaNo.

As I shared previously, this is a dual POV story featuring Francesca (a camper) experiencing summer camp for disabled kids for the first time.  It will also feature a new character, Weston.

Having finally figured out a way to watch 13 Reasons Why safely (fast forwarding through self harm and brutal assaults / content) I spent this past August and September deep in the world of these characters, and particularly struck by Justin Foley - his love and honesty - when he could be honest - was poignant and raw.  

With less than three weeks remaining until NaNo this year, the idea for Weston came through strongly.  I wanted his love and honesty to mirror what I saw in Justin.  I wanted to give Weston an end, and safety (not perfection, not a perfect happy ending, but safety) that Justin never really found.

Sarah:

In Found, we briefly met Sarah Jensen, who led a session at the workshop that was all about inspiration porn.  

We know she's a wheelchair-user who has a theater background.  We know she's unafraid to take the lead in a group situations.  

We don't know, at the time, that she had adopted a 14-year-old she met through her work at a local nonprofit for foster youth.  That, together, Sarah and Weston, are making it work as a family, with honesty (a lot of therapy) and trauma informed-care - all to make certain Weston can feel and know the safety around him.

Weston:

Weston's a trauma survivor...but he didn't always know it...because for him, it was just life.

Having struggled through a series of moves and a lifetime in the foster system, his lifeline was sports and school.  He meets Sarah when he comes in, having run away from a foster placement at thirteen.  

By now, Sarah has her fostering license and takes Weston in, with the intent to adopt him.  He moves in at the end of April, 2015.  The adoption is official on Halloween, just after Weston turns 14.  To celebrate, they get a family tattoo - two bats flying - behind their right ear (once Weston turns 18.)

Now 20, Weston's known safety, love and stability for less than six years.  The open and honest communication he shares with Sarah is the cornerstone of their bond.  When Sarah mentions wanting to work at NAU's summer camp for kids with disabilities, Weston struggles with the idea of staying home in an empty house while she works.

So, they both apply and both are hired to work together at Camp Bravery: Him in the boys cabin, and her in the girls (as one of Francesca's counselors).

How will Fran and Weston cope?

We'll have to see when the story is finished...

A FINAL WORD:

It has been really eye-opening to be able to chart my writing of disabled characters from childhood until now.  And I think it stands to show just how important safe people and disabled community are to disabled people truly accepting ourselves.

By making connections in the disabled community, I was finally able to fully see and accept myself as disabled, and that showed in my writing and my characters.

Thanks for coming on this journey with me.

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