Disability Pride Month Q & A

1,478 words

11 minute read

I came across this set of questions on Twitter, created by @camille_grace1 and I love being able to find and read answers in one place, I moved the questions here:

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1. When did you first hear of Disability Pride Month?

Last year, honestly.  I posted about it here: Forging Disability Pride in a World of Ableism.

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2.  When did you realize you were disabled?

I've known all my life about my CP.  Realizations about C-PTSD and being neurodivergent came in my late 30s.

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3.  What do you want abled people to know about disability?

So much.  It's why I started this blog in the first place.  If you're nondisabled, hang around, click on some posts, learn.

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4.  How can online spaces be more accessible to you?

Dark mode / Night mode available.  No massive blocks of text (paragraph frequently.)

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5.  How can physical spaces be more accessible to you?

Smooth surfaces.  Gentle inclines on ramps.  Ramps available at the front of buildings.  Accessible door buttons that work.  Accessible bathrooms (not used for storage, big enough for wheelchairs.)  Know, "We only have one step!" is inaccessible to a chair user.  Curb cuts and entrances clearly labeled (maybe a bright color?)  Sidewalks maintained (so massive cracks don't mean tipping / dropping things.)

Related:  Let's Talk About The Time I Dropped My Mom's Mother's Day Flowers on The Ground

If you must have steps / have not updated your space to be accessible:  Shovel your snow in the winter (do not pile it in front of ramps.)  Railings on steps securely attached, and carpet squares attached to stairs for traction.

Related:  Things I Want To Tell You, But Can't

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6. Do you use any mobility aids?  Show them off, if so!

This is Greenie.  We posed together for International Wheelchair Day earlier this year!

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7.  What are your thoughts on the social model of disability?

It changed my view on disability and really made it possible for me to begin accepting myself.  Realizing a lot of my barriers were not due to my disability itself but society really changed things for me.

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8.  Do you use the Spoon Theory?  Unified Cutlery Theory?

I don't.  I have spoken here (with my sis) about Capacity Shift though...

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

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9.  Show me some of your assistive gadgets?

This shower chair, though.  It's pretty amazing.

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10.  What helps when you're having a bad day?

Routine.  Routine equals safety to me, so even if nothing feels particularly safe, routine helps me keep what little equilibrium I have.  I lean heavily into well-loved Netflix or Hulu shows, Play-Doh, good candle smells, etc.

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11.  Do you have accommodations for school or work that make your life easier?

I admit, the wording of this one kind of gets to me.

To me, accommodations don't just make things easier, they make things safe.  Or possible.  Or both safe and possible.  The accommodations I did have at school -- shortened assignment lengths sometimes or adaptive gym, didn't make those things easier for me.  It leveled the playing field, so to speak.

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12.  How do you feel about the word crip -- especially in a reclaimed sense?

On a personal level, I could never reclaim it for myself, without remembering the terror it caused when the word was being screamed at me as a child.

I fully support others' decision to reclaim.

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13.  How do you find disabled community?

First, through summer camp as a teenager.  And as an adult, through Tumblr.  That led me to creating my own blog here, and that led me to my current disabled friendships.

Related: Crip Camp Reminded Me How Camp Changed My Life as a Disabled Teenager

14.  If you have an acquired disability, how have you adjusted to it?  What helped with the adjustment period?

If you were born disabled, have your thoughts about your disability shifted over time?

Definitely!  I grew up feeling very lonely, very different and very wrong for being disabled with a lot of internalized ableism -- thanks to being surrounded by ableism and abuse.

Now that I'm an adult, and I know that being disabled informs every part of my life and is a big part of my identity, being able to embrace that has been huge.  Realizing we have a culture and all of these shared experiences and ways of doing things -- super validating.

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15.  Favorite disabled artists?  

lyssachelle.art and rhemasart

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16.  Drop disabled shop owners' links below (yours or someone else's)

LyssaMac's Shop (Redbubble) and Rhema's Art

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17.  What makes you proud of being disabled?

I sound like a broken record but the amazing community of people I get to be a part of is something to be proud of.  Our specific abilities to adapt and find new ways to do things and approach situations is pretty unparalleled.

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18.  Do you find it difficult to be proud of being disabled?

I did, like, last year when I first discovered Disability Pride Month was a thing!  It felt a bit like being proud for surviving -- which is a feat these days!

19.  What are some of your other identity categories?  How do they intersect / interact with your disabled identity?

I'm white.  I'm a woman.  I'm asexual.  To name a few.  To be white means I do have a certain amount of privilege in situations even as being disabled and a woman mean a lack of privilege and being asexual is almost viewed as "Well, of course, you're disabled."  But it has more to do with my childhood than it does with being disabled.

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20.  Are you multiply disabled?  Do you find some of your disabilities more difficult to deal with than others?

Yes and yes.  C-PTSD is much more difficult for me to deal with than CP.  And while being neurodivergent isn't new, my awareness of it is.  So it means I am super aware when I make a social mistake.

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21.  How do you feel about "disability warrior mom" types?

I wonder if they know that by fighting their child's disability (assuming it is not life-threatening) they are also fighting their own child's identity.

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22.  How can abled people be better allies to you / our community?

Listen to disabled people. Believe disabled people. Don't put your head in the sand.  Realize your own privilege, share our words, and back us up when we speak up about an issue that concerns us.

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23.  Do you support self-diagnosis?  Why or why not?

Yes, absolutely.  While getting diagnosed is helpful for garnering services, it also involves a lot of work and a lot of hoops to jump through.  Including, but not limited to: safe transportation and contact with an ableist medical system to name a couple major ones.

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24.  Thoughts on capitalism?

After looking up the simplest definition possible on how capitalism relates to disability, I think it's rude and contributes to ableism.

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25.  Do you have any tips on unlearning internalized ableism?

Individuating from toxic people and connecting to the disability community really helped me with this.  But I know it's not possible for everyone.  Even if you can only do the second part and connect with disabled people, it will help you realize you are not the problem -- and that you are not alone.

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26.  Disabled POC: anything you want white disabled folks to know?

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27.  What do you wish parents of disabled children knew?

How and When to Talk to Your Kids About Their Disability (video)

What You Need to Know About Cerebral Palsy From Adults with CP (video)

Parenting Kids with CP (a blog post series)

All About CP and Me (free eBook)

We Belong (a middle grade novel)

Growing Up With a Disability: The Early Years (Ellen Stumbo)

Growing Up With a Disability (video interview with Ellen Stumbo)

What Is Ableism? (Ellen Stumbo)

CP and Therapy (a blog post series)

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28.  If you use mobility aids and / or other assistive devices, how do you feel about them?

I think I covered this above, but I love Greenie.  The prevailing narrative is that a wheelchair user is "wheelchair-bound" but I am not trapped here, I am free here.

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29.  Favorite disabled authors / scholars?

10 of My Favorite Books Written By Disabled Authors

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30.  Do you feel represented by the wheelchair as the symbol for disability?  If not, do you have any ideas for a more inclusive symbol?

I'm a wheelchair-user myself and I think the wheelchair is objectifying and limiting.  Maybe the pride flag as a more widely accepted symbol?

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31.  What are your thoughts on person-first vs. identity-first language?

Self-Identifying as Disabled

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My Answers to Your Questions - Celebrating 7 Years at Tonia Says

1,136 words

9 minute read

At the end of July back in 2014, a former coworker shared a blog post written by a parent, advising how to best interact with her child with disabilities.

I responded to her, realizing that the parent's advice did not necessarily match what I would suggest -- as an actually disabled person.  I wrote a personal response to this, and when I realized there were likely more people who could benefit from it, I made it into my first blog post.

I created this blog, Tonia Says, the following day: July 29, 2014.

To celebrate blogging here for the last 7 years, I wanted to answer your questions.  So last month, I put the word out on my social media -- and I'm so glad to have the chance to answer your questions!

[Image: Frosted cupcakes are lit with 7 candles]

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What written work (any format) are you proudest of and why?

As far as blog posts, I'm proudest of When Accessing Basic Needs Is Anything But Basic.  I worked on it for most of a year, and shared about things I had yet to share about.  It's a really important post and one that means a lot to me, because of how common an issue lack of access is for disabled people -- even in our own homes.

I also have another post coming up about medical trauma and CP that I'm really excited to share.

As far as other writing, I think I'm proudest of Found, which I finished in 2019 and took me nearly a year to write.  

For those who may be unfamiliar, Found is the fifth story in my current disability fiction series.  It's long.  It covers a lot of ground and a lot of topics, like abuse, like trauma, like parents coming face to face with their own ableism.

I'm proudest of it because it's something I got to work collaboratively on with my sister.  (She wrote the equivalent of ten chapters of much-needed content.)  I'm the most proud of it because I think -- more than any other -- it digs deep into these topics and stays with the characters through their discomfort.

Plus, I really enjoy all the seeds that are planted there for future stories.

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How do you continually find inspiration for new blog posts?

All over!

I still have a list of prompts saved from my brief days when my content was published on The Mighty.  I enjoy taking those prompts and kind of reinterpreting them if I have no other ideas.

I also get ideas from media -- podcasts, Netflix shows.  If something catches my interest and I want to delve more into it I do.

I'm a part of a couple groups on social media where I see a lot of the same questions asked by parents of kids with CP.  If I see a question asked a lot -- or a topic that keeps creeping up that I feel needs addressing, I make sure to do that via a blog post.

And finally, I get most of my ideas from my people in my life.  My blog post series ideas have all spawned from people in my life suggesting them -- except the writing disabled characters series -- that was a rare idea that was all mine.

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About your experience writing Disuphere: Who is the easiest POV to write from and who is most difficult? 

Honestly, Jesus's POV was probably the easiest to write for me.  His came really naturally.

And His POV was the most difficult.  I'm glad writing the story didn't end up taking longer than it did because by the end, it really started doing stuff to my mental health to keep writing a character like that.  To get inside His head and kind of live there.

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Which of your characters are you the most fond of and why?

I think it changes story to story, to be honest.  

So, right now, I'm fondest of Weston.  He's really intriguing -- and really the first character I get to follow through his whole life.

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How do you plan the structure of your stories? Is the process always the same or does it change with different books?

The thing is, I really don't.

For Disuphere, I knew I wanted to tell one story in the present and another in the past.  For The Crossing I did explore the idea of telling a story in 40 scenes / 3 acts, because my main character was into theater.

But generally, two weeks before I start writing, I get an idea, and then I spend those two weeks either getting to know a new character or brainstorming general ideas with Tara.  (If the situation calls for it, Tara makes me a really good timeline or a map.)

But the structure of the stories is really a living, breathing thing.

The characters tell me where to go next.

I very rarely know how a story will end.  But I know the end when I reach it, if that makes sense.

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Is there anything you regret writing? Or would want to rewrite differently?

As far as blog posts, I don't have any I regret writing.  There are a couple I have rewritten since they were originally posted.  So that they reflect events more honestly.

My biggest fear has really been that I'd have regrets over things I haven't written.  

In 2020, with the pandemic hitting, I made the decision to stop holding back and be as honest as I could safely be.  That's when the rewrites of those posts took place.

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What's your favorite blog series over the years? What's your favorite media review?

I'm keeping these questions together because my answer is the same: our 13 Reasons Why brain injury representation blog series is my favorite because it's so in depth.

I love being able to discuss so many different facets of representation.  And the fact that it is largely positive means that I don't feel as though my soul is being sucked out of my body -- which is the case with so much (negative) media representation that I get asked to comment on.

(Please come check out our current series!  Tara and I are working really hard on it and we're loving the opportunity to share it!)

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What do you love about having CP? (I know you’ve answered this before kinda, but I’m curious to see if your answer has changed at all!)

I love the people in the CP community, and I love how we support each other.  I love our ability to adapt (because it's such an undervalued skill and we rock at it.)  I love CP laughter and being able to see myself in the faces and the movements of others with CP.

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13 Reasons Why: Alex's Friendship with Zach

2,187 words

17 minute read

TW: GIF Warning

2x01, 38:49 - 37:20 remaining  

TW: reference to suicide note, ableism

2x02, 51:39 - 50:43 remaining  

TW: ableism

2x11, 29:44 - 26:49 remaining  

TW: large fist fight, homophobic language, reference to suicide, pulled fire alarm

2x12, 51:53 - 50:29 remaining 

TW: allusion to suicide attempt

2x13, 29:54 - 28:08 remaining  

TW: ableism, discussion of masturbation

3x01, 49:53 - 49:00 remaining

4x01, 9:15 - 7:39 remaining  

TW: heights

4x04, 25:13 - 22:20 remaining 

TW: underage drinking, near drowning, fear

4x10, 1:21:53 - 1:19:36 remaining  

TW: underage drinking

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Alex’s friendship with Zach is complicated at best.  There are many aspects of their interactions that are cringeworthy but realistic, and that beg discussion.  That’s a lot of what you’ll see here.

While Alex has a number of friendships, this one may be the most fraught with obvious disabled / nondisabled cultural clashes -- which are further exacerbated because Alex is new to being disabled and often unsure how to navigate Zach’s many attempts to help.

Tara and I look forward to delving into this friendship and we hope you’ll read along.  Feel free to check out the correlating scenes (on Netflix) if you can safely do so.

[Image: Alex and Zach hide out behind an office desk and peer over its edge.]

In the hallway at school in 2x01, Zach grabs Alex bodily and tries to physically hurry him along, to avoid an interaction with antagonist, Bryce.  Alex objects, “I can’t turn that fast.”  

In 2x02, Alex makes jokes about not giving Zach sexual favors as a response to needing so much help. Moments later, Zach sees Bryce and urges Alex to use the side entrance, but Alex says “It’s way further and I get tired easy.”  Zach insists, “I’ll carry you,” and tries to physically pick Alex up until Alex puts distance between them himself.

Why does this resonate?  Why are scenes like these important?

TARA: There’s definitely a sense of entitlement or ownership around disabled bodies, which are largely seen as inconveniences to nondisabled individuals. It’s difficult to justify the portrayal of nonconsensual grabbing or coerced movement (especially without it being addressed). I guess I would say that seeing moments like this have the potential to be the first step in recognizing that this is not okay.

TONIA:  I think these scenes resonate because this kind of thing is common as a disabled person.  We are handled by nondisabled people all the time.  It is difficult, because of the inherent power imbalance, to object and keep ourselves safe.

As Alex doesn’t have the element of physical strength here, he has to use what he does have to put Zach off from handling him.

A more subtle aspect of the scene is that Alex is using humor to deflect about the help he now needs.  If they can joke about it, Zach is happy, if Zach is happy, Alex has access to the help he needs.  When we are in uncomfortable situations, or situations where the power is imbalanced, nondisabled people are told, "Just leave."

But we can't.

Often our unsafe situation is our own home.  It's teachers or peers at school.  There isn't an escape, so we must learn to cope somehow.  Learn to survive where we are, because we have no other choice.

So, sometimes that means using self-depricating humor.  Laughing at jokes that we are the butt of.  Or joking in a way that we normally wouldn't.

Needless to say, I really appreciate that this subtlety is here.

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Throughout the rest of Season 2, we see Zach using Alex by inserting himself “helpfully” into all sorts of situations (PT, carrying items etc) while refusing to admit publicly to having a friendship with him. Have you ever experienced anything like this?  

What do you think about “13” taking the time to tell this particular story with regard to disability?

TARA: Being used for any reason sucks. But being used as a pity project or as someone’s good deed and subsequent ego boost sucks in a very specific way. I’d hazard to guess that many to most disabled people experienced this. I have a few times. Once, I had my name and diagnosis outed by a former friend for the purposes of fundraising. Another time, a neighbor who volunteered to drive me to work became the focus of a feel-good local news story. The neighbor received $500 in airline vouchers. I (again) had my name and diagnosis outed.  

I like that “13” has taken the time to tell this particular story, because we don’t often see it represented. More often, disabled people are the ones in need of help, while nondisabled people are centered and praised as helpers.  We don’t see how it feels for disabled people to be used in this way. (And if you read about Alex's birthday or watched that episode, the pain of this type of exploitation is profound.) 

TONIA:  I think there is this common misconception out there that help equals friendship.  The consensus reached by my really ableist teacher in fourth grade was that I had “many friends.”

I didn’t.

I had one friend who I liked hanging out with.  The rest were assigned to help me.  And knowing the rest were obligated?  It never felt good, even if they seemed to want to help me.

Because, again, it was one direction and the power dynamic was skewed.  I’d say it’s skewed here, too.  Zach never asks Alex if he wants help, he just takes his bag (for example.)  That’s a big way to throw off a disabled person’s balance.

The situation differs here because Zach and Alex had a friendship before Alex’s suicide attempt, and afterward Zach begins to use ‘helping Alex’ as a reason to avoid antagonist, Bryce.  But it takes a while for their friendship to...grow back?  (What are words?)  When it does, it looks different.

I would say, though, that it is a common theme throughout season 2 that Alex’s friends don’t say they’re with him.  We see, with classmate Tyler, that his dad actively encourages him to seek out “other friends” for fear that Alex’s mental health struggles may affect his son.

There’s a lot going on here, and it’s difficult to narrow down. 

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In 2x12, Zach arrives in Alex’s room, freaked out, with Alex’s mom.  Alex wakes up after sleeping hard.

Zach:  This is what I woke up to this morning: [Reads Alex’s texts] “I have a gun. I have a bullet. I figured it all out.” You can’t text this shit to people then fall asleep! The last time you didn’t answer my calls and texts… Alex: I was going to explain more, but my thumbs got tired.

What do we notice or want to comment about in this scene?

TONIA: What stands out to me is after Zach establishes that Alex is okay and shares his feelings and fears with Alex, he does sit down and hear him out.  While not intentional, he does end up adapting for Alex’s tired thumbs with a face to face conversation to get the information Alex was trying to communicate.

Tara?  What stands out for you?

TARA: I do love the honest communication on Zach’s part. More than that, though, I’m almost giddy at the representation of fatigue after an activity that most nondisabled people would not deem fatigue-worthy. 

I love that we see Zach misinterpreting the situation in part because he doesn’t understand this aspect of Alex’s brain injury. 

TONIA: Oh, I hadn’t thought of that!  

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In 2x13, Alex mentions feeling worried about dancing with Jessica at an upcoming school dance.  He doesn’t want to sit the entire time but that “if I try to dance, I think I’ll just fall over.”

Zach offers suggestions, but Alex shrugs each off, not comfortable with any of them.  Zach then says, “I am sick of your ‘poor-me’ attitude.  This one’s easy, stand up.”  He ignores Alex’s protests that it’s embarrassing and insists he put the video game controller down, pulling him to his feet in order to teach Alex some adaptive dance moves.

Can we talk about the portrayal here?  How do we feel seeing Alex’s worries about the dance?  How does Zach ‘helping’ Alex land with each of us?

TARA: Alex’s worries are valid. His bodymind does work differently now, and this is his first school dance post-brain injury. (It took me over 10 years to feel comfortable dancing after mine!)

TONIA:  I think it would be easy for audiences to watch this scene and be ‘touched’ by Zach helping Alex, but I see another instance of Zach ignoring Alex’s limits.  Ignoring his “no.”  He’s steeped in really toxic ideas about disability and makes no secret of sharing those views with Alex.

He doesn’t take Alex seriously, or know what it’s like to approach or contemplate dancing with a date with hemiparesis and all it entails.  Zach is nondisabled.  Of course it’s “easy” for him.

Some of the most toxically positive things -- that really stick with me -- involve nondisabled people around me minimizing my valid difficulties.

TARA: Agreed, Tonia. Zach’s minimizing of Alex’s concerns is hard to watch. I’m definitely not a fan of the nonconsensual grabbing or any of the other ableist stuff that’s happening. 

Do I think that this scene would have been more realistic with Alex getting these dance tips from another disabled person? Absolutely.

TONIA:  Yes!  Agreed!

TARA:  However… A huge part of disabled culture involves experimentation when it comes to figuring out how to do something, whether it can be done independently, whether further accommodations or adaptations might be needed, or to determine that an activity is currently or permanently unattainable. So, while Zach is right in encouraging this aspect, the way he went about it was cringeworthy, in my opinion.

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In 3x01, Zach comes to school injured and on crutches.  Alex offers to take Zach’s bag, and Zach turns him down.  

Nondisabled people are often uncomfortable accepting help from disabled people.  Let’s discuss this.

TONIA: There so seems to be an inherent discomfort on the part of nondisabled people in accepting help from disabled people.  Zach turning down Alex’s offer of help did not surprise me at all. Maybe because my own memory of offering help to a nondisabled person and it going...weird...stands out in my mind.

When I was in my 20s, I worked as a counselor at a Bible camp.  One of my coworkers (who I’ve referred to as Callie) was very big on helping me out.  Even offering to piggyback me through the woods in the dark.

One afternoon, though, when she was clearly stressed and we were in the midst of some hot days, I asked if there was any way I could help her.  She said no.  I noticed her water bottle was empty and offered to fill it, as we were very close to the dining hall, and the water fountain inside.  Callie said no.

I should have respected her no.  I know that now.

I didn’t.  I said, “It’ll just take me a minute, I’ll be right back.” I took it, filled it, and returned it to her.

She looked physically pained as she said, “I told you, you didn’t have to do that.”

I assured her, “I know.  I wanted to.”

But it didn’t matter.  Accepting help from me -- one of two to three disabled members -- was out of the question.

Callie wasn’t thankful for my help (not that she owed me gratitude), she was deeply uncomfortable about it.

TARA: In general, nondisabled individuals seem intent on not needing help. Moreover, help offered from a disabled person seems to feel offensive to a nondisabled person due to ableism -- as if by accepting help from us, it might bring a nondisabled person “down” to our level. :/

TONIA:  Oof.  I think you nailed it there.

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As problematic as Alex’s friendship with Zach can be, the two of them have a habit of not only looking out for each other, but actually saving each other.  (Zach saving Alex from falling off a roof and drowning in 4x01 and 4x04, Alex saving Zach from getting beat up in 2x11 and Alex saving Zach from himself basically in 4x10.)

Why is this dynamic important and what do we hope people gain from seeing it?

TONIA: Zach prioritizing and saving Alex’s life communicates the important message that disabled lives have value.  And Alex saving Zach communicates more about Alex being a fully developed disabled character, capable not only of getting help -- but of giving it.

TARA: Alex and Zach’s friendship isn’t perfect -- no friendship is -- but they show up for each other when it counts. The fact that we get to see this interabled friendship grow and change over episodes, seasons and years is a rare thing indeed. 

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Return to the Table of Contents

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Have you seen 13 Reasons Why on Netflix?  

Did reading our conversation about Alex's friendship with Zach help you realize anything or notice anything you hadn't registered before?  

We'd love to hear from you in the comments.

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Connect with Tara on Twitter @TaraJean

13 Reasons Why: Alex's Friendship with Tyler

2,079 words

16 minute read

TW: GIF Warning

2x01, 16:43 - 14:14 remaining  

TW: discussion of food restriction, discussion of suicide attempt (bullet trajectory), reference to nonconsensual photographing

2x02, 28:13 - 26:05 remaining

3x01, 28:42 - 27:15 remaining; 

3x01, 21:30 - 20:10 remaining,  

TW: brief flashback to physical assault, intimidation, panic attack

3x02, 53:12 - 51:42 remaining;

3x02, 42:48 - 41:22 remaining,  

TW: intimidation, extreme fear response, threats of violence with a knife, sanist language

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Alex’s friendship with Tyler is one of the dynamics that we enjoy most on screen.  It seems to grow from Alex’s time in the hospital, and then flourish, despite Tyler being encouraged to hang out with “other friends” in the aftermath of Alex’s suicide attempt.

And when Tyler is brutally assaulted at the end of season 2, we see that the help goes both ways.  Alex is there for Tyler, keeping him safe, in a time when he sorely needs it.

Today, Tara and I are discussing this friendship.

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In 2x01, Tyler comes over with junk food for Alex.  He opens a bag of Cool Ranch Doritos for Alex seamlessly before handing him the chips to enjoy.

Can we talk about how meaningful it is when friends help without making it a big deal?

TONIA: Being helped in the way we need without awkward questions or discomfort is such a huge deal.  For me, before I individuated from toxic people in my life, the experience of being helped in this manner was rare.  So when it happened -- especially when help was given by a nondisabled friend -- it was notable.

It’s interesting to note how Tyler is one of Alex’s friends who is able to seamlessly help him.  Tara, you had some thoughts about why that is.  Did you want to share them?  I think they’re really interesting.

TARA: Seeing Tyler open the bag of chips and hand them to Alex in and of itself displays a deep understanding of Alex’s hemiparesis. While others in Alex’s friend group may have been frightened by his suicide attempt and injuries, Tyler’s macabre sensibilities may have led him to 1) do some basic research or 2) spend enough time with Alex during his hospitalization to understand how his body works now. 

This moment of quietly understanding how to help is so powerful to see. It is juxtaposed with many other moments -- Tony trying to assist Alex on the courthouse steps, for one -- where friends are well-meaning but fail to get the intricacies of what Alex might need. 

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In 2x01, Tyler tells Alex that he and Bill “bonded” when Alex was in his coma. Do we want to talk about the phenomenon in disability culture of having (nondisabled) friends bond with parents or other family members when we’re indisposed or in crisis?

TONIA: While this might be a little off base, what it brings to mind for me is the way, often, nondisabled parents receive care and concern for having a disabled child go through surgery, or go to IEP meetings, but the actual disabled child gets none of the same concern.

It’s a meeting -- presumably about the child -- but the child is often not present, or when we were, we were not allowed to have a voice of our own.  It’s a room full of nondisabled people talking about us, making decisions, bonding over the difficult process and yet no one sees that the person at the center of the difficult process is us.  No one sees how it impacts us -- or thinks to look.

While I don’t know firsthand what it would be like for Alex to hear that comment or how it might feel, I can guess it might be disorienting or alienating, maybe?

Tara, did you want to say more about this?  I get that it’s not just metaphorical for you.

TARA: I’m super happy that this was depicted on “13.” Yet another piece of disability culture that I’ve not really seen given nuanced screen time. We’ve touched on this a bit in Alex’s birthday episode post, but it is an interesting bit of continuity seeing that Tyler and Bill have this separate relationship now. Miles Heizer (Alex) plays these moments quietly, which feels true to life. 

You come away from comments like this feeling glad that your people had support while also feeling somewhat obsolete. Not only were you not there / not aware of this intense bonding. In addition, you’re disabled, and your nondisabled friends now seem to have more in common with your nondisabled family members than with you. 

TONIA:  I can definitely see how that would be the case!  

They were bonding over what happened to Alex while Alex was present, but unconscious.  Tyler and Bill presumably had all this time to talk and wonder and discuss things and Alex wasn’t really a part of it.

***

In 2x02, we see Alex looking at the pictures Tyler took of him in his coma, but we don’t see the pictures.  Just Alex’s face as he looks at them.

Talk about this moment.  What stands out about it?

TONIA: Ten out of ten times, we would see a moment like this exploitatively overshared about.  We would see Alex recovering in the hospital in all kinds of vulnerable situations.  At the least we would see these pictures.

But we don’t see them here.  This moment stands out because while Alex was obviously photographed without his consent (which is definitely an issue) “13” made the choice not to show these photos on screen.

Instead, we see Alex’s face as he sees the pictures.  We see him reacting.  It keeps the focus on him, and continues to center him in his own story instead of centering his suffering and exploiting it.

[Image: Alex, looking at photos, while Tyler -- at the edge of the frame -- clicks through them for him.]

It's a huge issue in the disabled community, nondisabled parents regularly oversharing about disabled kids.  We grow up used to giving our medical diagnosis to anyone who asks, feeling forced to answer questions about our diagnoses - I was in fourth grade when a classmate was hanging out with me on a playground.  Another kid made a mean comment and the classmate yelled, incensed, at the mean kid: "She has a disease!"

I felt like I had to set her straight.  I was nine.

It would have been so easy for Tyler to put Alex on the spot.  To ask him a bunch of questions about how his injury affects him.  Instead he says: "It's a lot to take in," and then just lets him look.  And Tyler is the one willing to answer Alex's questions.

TARA: This moment made me feel extremely safe during a show that is said to glorify trauma at times. It felt like “13” understood that the point was not the pictures themselves. (It would have been easy enough to create and display them as a sort of pity objectification.)  But we don’t see them. They’re not for us. They’re a piece of Alex’s life that was previously unreachable that he is seeing for the first time. We see him trying to fit the images into the context of his own history. 

It is also notable that Tyler is seamlessly clicking the mouse to show Alex each picture on the laptop while Alex stands, holding his cane. This level of adapting and understanding is almost shocking to me. The level of attention that Tyler has to the nuances of Alex’s hemiparesis is stunning. And being able to then convert that attention into appropriate help? This is why representation is so important. This is why we need more nuanced stories of disability, interdependence and interabled friendship. Representation guides us. It teaches us how to treat each other. Tyler doesn’t exploit these moments for pity points -- they are instead part of being friends with Alex.

***

In 3x01 and 3x02, Alex is included in the group of people Clay organizes to take care of Tyler.  Alex’s “brain injury hurts” looking at the spreadsheet Clay created coordinating everything.  

Alex stays the night with Tyler early on to ensure his safety, stays with him in the class they share.  Alex also notes Tyler’s discomfort about getting a ride with another friend, and Alex offers to let Tyler ride home with him instead.

What does it mean to see Alex included in the group of friends who care for Tyler?

TARA: First off, I love the representation of neurofatigue in the statement, “My brain injury hurts.” After an injury, our brains do not function at full capacity when we’re required to expend high levels of mental energy. This results in neurofatigue (also known as mental fatigue, cognitive fatigue or brain fog.)  We use high levels of cognitive energy at mundane tasks such as reading, watching TV or filtering light and sound. Neurofatigue differs from run-of-the-mill tiredness because it feels more like bone-deep exhaustion or the flu, and it requires a disproportionately long recovery time. Going back to Alex’s comment, headache is a common neurofatigue symptom.

TONIA: Yes!  I was hoping you’d comment on that line (as it’s not something I can really speak to.)

TARA:  As for seeing Alex included in Tyler’s care plan, I think it’s extremely powerful. Many or most of us within the disability community survive due to interdependence, and I love seeing that represented on “13.” 

TONIA:  To me, representation like this means the world.

Seeing Alex included in helping and taking care of Tyler and having it be so seamless communicates to the audience that Alex’s brain injury does not preclude him from being able to help others.  (We’ve seen this before, when Alex saves Justin in 2x08.)

But this is an ongoing example of how disabled people can and do help our friends and people close to us, despite the prominent narrative that we only get helped.

At age 9, I was asked in an assignment what ways I helped my family and friends and I could not give one specific example because of how disabled people were seen when I was growing up.  My answer was vague.  At a loss, but knowing I could not answer that I helped with nothing, I wrote that I helped with “certain things.”

I know I sound like a broken record with the “media teaches audiences how to treat people in marginalized groups” but it’s true.  

Seeing Alex helping Tyler shows audiences that it’s possible for disabled people to be there for people in our lives.  That we are not only the recipients of help, but capable of giving it, too.

***

In 3x02, Alex notes Monty abusing Tyler and confronts Monty in the school bathroom.  When Monty does not listen to talk, Alex shows that he has a knife.  When Monty calls him sanist names, Alex nods, and says, “Yeah, I am.  So leave.”

Can we talk about the subtleties here?  About the fact that as disabled people, sometimes we have to lean into stereotypes to get what we need?

TONIA:  There is definitely a lot going on for Alex at this point 

And it would be easy, as a disabled viewer, I think, to look at this scene and just cringe at the TBI Makes Someone Violent stereotype being portrayed again.  (It is, admittedly, what I thought, when I first watched.)

One of the reasons I think this feels different to me is Alex’s motivation.  He’s using Monty’s fear of him in order to protect Tyler from further abuse.  

Because Alex’s brain injury means he is part of a marginalized community, unfortunately that means there are people for whom his word is not enough.  People who will never take him seriously because of it.

And as disabled people, sometimes we do have to lean into gross stereotypes to get what we need or, like in Alex’s case, to protect a friend.

TARA: You said it. 

I’m not sure if I’d call it a trope, but seeing disabled people knowingly use stereotypes to gain information or fulfill a need feels like the tiniest little “Screw you” to ableist society and systems. 

TONIA: Oh, I love that.  Perfect way to end.

***

Return to the Table of Contents

***

Have you seen 13 Reasons Why on Netflix?  

Did reading our conversation about Alex's friendship with Tyler help you realize anything or notice anything you hadn't registered before?  

We'd love to hear from you in the comments.

***

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Connect with Tara on Twitter @TaraJean

13 Reasons Why: Alex Saves Justin

1,211 words

9 minute read

TW: GIF Warning

Scenes referenced in 2x08:

18:20 - 16:49 remaining  

TW: IV drug use, unconsciousness, overdose, near-aspiration, vomit

16:17 - 13:45 remaining 

TW: reference to IV drug use, reference to overdose, homophobic language, reference to vomit

***

It's worth noting, going into this post, that Alex and Justin are not friends.  In fact, Alex later says about Justin: "We didn't like each other, but when I needed him, he helped me."

To Tara and me, Alex and Justin's mutual dislike for each other is just one more reason why what we're about to discuss is pretty remarkable.

In episode 2x08, Alex stops by Clay’s house, looking for him.  Instead of finding Clay, he finds Justin in Clay’s room.  At first glance, he appears to be asleep, but then Alex notices the needle in his arm -- and he knows Justin has overdosed.

It’s quickly clear that Justin is in trouble and Alex is the only one that can help.  He attempts to roll Justin, grabbing his midsection and chest.  Justin is stiff and Alex can’t roll him.

Exhausted, Alex needs a break, but hears Justin starting to choke.  Alex adapts his approach, grabbing Justin by the hips and turning him that way.  Justin rolls onto his side and vomits.  Alex holds him gently in position so he doesn’t roll back and choke again.

[Image: Alex gently holding Justin in position]

He stays with Justin for several hours, making an attempt to clean up the vomit, getting Justin water and encouraging him to drink it, and offering emotional support and protection when Clay comes home and is angry about Justin ODing when Clay has just helped get him clean.

These were pivotal scenes for Alex, and meaningful for us, as well, representationally.  So, Tara and I knew we wanted to discuss them.

***

What did you notice about Alex adapting in the overdose scene?

TONIA: Honestly, I’ve watched the scene several times, and every time I struggle to see Alex adapting.  (This might be my place blindness in action.)  I see Alex trying once, getting exhausted, having to rest, and then panicking and trying again, but the subtleties -- if there are any -- are hard for me to pick up.  What did you notice, Tara?

TARA: I noticed Alex attempting to roll Justin by grabbing his chest and midsection at first. At this point, Alex is still trying to regain strength and mobility on his left side, and his balance is affected as well. When he is unable to successfully roll Justin in this way, Alex is forced to think and adapt quickly. He grabs Justin’s hips next. In using this point of contact, Alex is able to roll Justin onto his side in time for him to not aspirate. 

***

Alex not only looks after Justin physically, making sure he doesn’t choke, but stays with him and makes sure he’s safe until someone else arrives home to be with him.  How do you feel about this aspect in particular?

TARA: It’s uncommonly positive representation. We see that Alex is able to give help, when most disability representation portrayals are of being helped or even helpless. It is nice to see both giving and receiving help being represented in Alex.

That Alex stays to look after Justin speaks to the barest sense of decency. Justin needed medical care, and Alex chose not to call for outside assistance. 

TONIA:  It not only provides important representation of disabled people in a helping / supportive role, but also makes it clear that Alex is sensitive as a suicide survivor to what Justin just went through -- intentional or not, Justin nearly died -- and Alex knows firsthand how important support is in the aftermath of a situation like that.

That said, yes, Justin absolutely needed medical care, but it makes sense that Alex is afraid to call for help here.  A lot of these kids take on too much responsibility in terms of caring for each other, and not knowing when to outsource.

***

Alex makes sure that Justin doesn’t have to deal with Clay yelling at him right after his overdose.  Why do you think this is important?

TARA: Again, it’s uncommon to see a character with a brain injury (or any disability) defending another character, even verbally. 

TONIA: Definitely, and like I mentioned above, Alex has a specific understanding of part of what Justin’s enduring right now.  Knowing that he’s likely feeling all kinds of things at this juncture, and just survived a major crisis, Alex knows it’s important to minimize Justin’s stress.

***

Justin asks Alex about his scars, and Alex responds. Oftentimes, scars and other aspects of disability are a source of curiosity. There is often an expectation of a certain level of disclosure. What stood out to you about this exchange?

TARA: I guess just that it felt real. I’ve known these types of moments. On one hand, it can feel like an invasion of privacy. But on the other hand, it can feel like someone cares, sees, wants to know about this part of your life. To feel even a little seen after a brain injury is a big deal, especially when there’s so much cognitive dissonance coming from other people in your world. Also, while Justin is asking a private question, he also chose a private moment in which to do so.

TONIA:  What stood out to me was the level of trust / intimacy that existed between these two characters in this moment.  The fact that Alex just helped Justin through something really vulnerable, and the idea that Alex might be able to understand some of what Justin is going through, could have driven Justin’s questions here.

That said, I’ve definitely been put on the spot about my own scars.  There’s a reason I haven’t worn shorts for half my life.

Scars are personal and it’s a personal choice whether or not to open up about them.  And while there may be a certain level of intimacy in this moment, I also know Alex could feel put on the spot and pressured to answer Justin -- given Justin’s current fragile state.

***

Why is representation like this important for disabled people in the real world?

TONIA: It’s important because it goes against the narrative that disabled people exist only to be helped.  That we are burdens.  It makes it clear that we can help and be there for friends in urgent situations.

Saving Justin here does not give Alex value.  He has value already as a human being, even if he never did one thing to help or save anyone.  But it does push back against an often one-dimensional view of disabled people in the media.

We can help and save others.  And we do.

TARA: Seeing ourselves represented is powerful because it validates our existence - when you don't see yourself represented, the message you get is, “I'm wrong.” When we see characters or situations represented, we see possibilities.

***

Return to the Table of Contents

***

Have you seen 13 Reasons Why on Netflix?  

Did reading our conversation about Alex's saving Justin help you realize anything or notice anything you hadn't registered before?  

We'd love to hear from you in the comments.

***

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Connect with Tara on Twitter @TaraJean

Email Subscription Has Switched From FeedBurner to follow.it

114 words

1 minute read

Just a heads up that the old subscription service, FeedBurner is being phased out as of July, 2021.

To those of you who have subscribed to this blog via FeedBurner, don't worry!  You have all been transferred over to the new E-mail subscription at follow.it.

If you are new, and would like E-mail alerts when I post something new, please notice this widget on the top left corner of my blog:

When you find it (top left corner, not the one above) enter your email address and click subscribe.

Then, you'll be able to be alerted right away when I post something new.

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When a Toddler Helped Me Experience Disability Pride

436 words

3 minute read

Since it's still July, and thus, still Disability Pride Month, I thought I'd share a story.

(With thanks to Grace Dow, whose post: When a Little Boy Helped Me Experience Disabilty Pride jogged this memory.)

***

At eighteen years old, I had only just started attending what I call The Edge church (not its real name.)  I'd gone quite a few times over the past month and a half and enjoyed the quiet peace of the empty sanctuary as a friend prepared to play on the worship team for youth group.

Related:  Let's Talk About Faith

One Wednesday night, though, things felt different.

At the time, I wrote:

I don't feel this longing very often, but as I sit here in the sanctuary of [The Edge], I just want to run and dance and jump! I don't miss it very much, but right now I do and I am!  I want this so much! I can't even tell you how I want to just throw these crutches aside and go running across this wide open empty floor! 

Why am I longing like this for an ability I have never had?

***

A week later, I was back.

I left the sanctuary during worship on purpose because I didn't want to deal with the onslaught of feelings I was bound to have.

So I passed the time using the bathroom, and in no rush to get back.

It was just outside the bathroom, at the water fountain, where I caught sight of a toddler with her mom.  The baby was perhaps a year old.  She saw me and smiled.  I smiled back.

[Image: A baby with blue eyes, her hand by her mouth]

Then, she approached me, and at the time, I wrote:

She was completely taken by my crutches and could not stop running her tiny hand over them again and again. 

I think it was her mom who finally insisted they continue on wherever they were headed.  This baby might've stayed as long as possible, touching my black and blue metal crutches.  The things I had thought were the bane of my existence.

But this baby's tenderness toward them...  It started to change me.

This tiny human's acceptance of them...and of me...planted a tiny seed of something in me.  And though it would take eight years to leave the church that would end up harming me so deeply...and many more years to connect with the disability community, I do think my acceptance of myself started here.

And while it is no baby's responsibility to foster an adult's nonexistent self esteem, she helped just by being herself.

***

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How Pandemic Life Has Been for Alice Kina Diehl

762 words

6 minute read

It's been three years since I first interviewed Alice Kina Diehl back in July of 2018, when we connected about her career as an actor with CP.  So much has changed in the world since we spoke last, and I welcomed the chance to speak to Alice again.

Related:  Interview with Alice Kina Diehl

***

TONIA SAYS:  What have you been up to since we last spoke three years ago?

ALICE KINA DIEHL: Hi gang! So great to be able to write to you again. The last three years have been rather busy for me. 

My wife and I started a platform for people with disabilities primarily who use medical cannabis. It was originally just a few episodes for YouTube, and it spawned a whole Instagram community @rollin.__.stoned and website, Rollin Stoned. 

Essentially we are our own healing justice movement for cannabis and marginalized communities. I’m pretty proud of our journey so far.

***

[Image: Alice and her wife, Amanda, on the set of the Rollin' Stoned YouTube series]

***

TS:  How are you doing with pandemic life?

AKD:  Oy! Haha! 

First off, as a person born with a disability I have a lot of medical trauma. 

From going to therapy weekly for 20 years, to major surgeries when I was young. I have also experienced a lot of family death. 

So when the pandemic hit, it was like every fear I’ve ever had coming to a point. I was absolutely terrified at the beginning and I wasn’t coping well at all. 

Luckily, I was able to find a therapist and up my anxiety medication which really did help. Since then I’ve gotten vaccinated. I still plan to wear my mask in crowded places or whenever I see fit. 

Almost two years and I have a lot less anxiety about it and I consider that a victory.

***

TS:  Have you noticed the world becoming more accessible to disabled people throughout this time?  If so, how?

AKD:  In its own strange way I think it made the world a lot more accessible. Just simply by allowing people to work at home is huge. And Zoom is an absolute game changer for those with disabilities that aren’t able to drive in for the common meeting.

***

TS:  What’s one thing that’s bringing you peace and / or joy right now?

AKD: It’s hard for me to pick just one. I love my VHS collection.  It has always brought me joy in the hardest of times. My wife and family bring me joy as well as my animals. Cannabis also brings me great joy.

***

TS:  What is your favorite way to cope with stress of the unknown?

AKD:  Movies, music, meditation and cannabis.

***

TS: How has your work life changed since the pandemic?

AKD: Absolutely. It’s definitely slower.  I only did one gig during the pandemic. Lots of callbacks but nothing definitive. The industry is still coping with all the changes. It’s only been recently that It’s been full force.

***

TS:  How do you feel about regulations being lifted -- people being maskless -- and gathering in large groups again? 

AKD: I still think a lot of it’s too soon. You can still get [COVID-19] even if you’re vaccinated. So I just wear my mask and wash my hands. It doesn’t bother me and I don’t think it’s that hard.

***

TS:  What is one of your favorite pieces of media you’ve seen in the last three years?  Does it have any disabled representation?  What do you love about it?

AKD: Special. I think it was amazingly well done and truthful. 

That was the gig that I got to do during the pandemic. The crip prom scene an episode six, season 2! It was like the prom that we all deserved. We all got tested multiple times and then filmed it for two days. We all had to trust each other immediately otherwise it wasn’t going to work. Thankfully no one got sick in the making of it. It was a true blessing to be a part of. 

We made gay/disabled history!

***

TS: What’s coming up for you?  Any new roles or projects?

AKD: For the last couple of months I’ve been working with the Maysoon Zayid on some table reads. 

It feels wonderful to be able to read multiple characters and know that somebody sees my range and my capabilities. I know in my heart that it is leading somewhere bigger I’m just not sure what yet. Time will tell.

***

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10 More Things to Know When Getting Vaccinated with CP

518 words

4 minutes

Three days ago, I got my second dose of the Moderna vaccine.

Since my first post seemed to be helpful, I thought, perhaps, another would be important as the second dose is a little different.

Related: 10 Things to Know When Getting Vaccinated with CP

***

[Image: Me pointing to my bandaid after getting my second dose]

***

1.  Your second dose might not exactly be 2 weeks later

Our second dose (scheduled when we got our first) was a month later.  This ended up being ideal, as it allowed plenty of recovery time from the first.

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2.  Going out might be easier

Staying in for one month, it's a lot easier to go out than it was for me staying in for 16 months (before my first dose.)  It was also reassuring that I had 80% immunity this time.

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3.  You'll still be asked to mask

I like to coordinate mine with my outfits.  

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4.  Don't forget to hydrate

Though it wasn't spelled out explicitly this time, we still made sure to drink 16 ounces of water before we went.  And we kept drinking our usual 100 ounces per day afterward.

***

5. Hand-sanitizer may be inaccessible

I like to bring my own.  (And disinfectant wipes, just to be safe.)

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6. Your wait time afterward may be shorter

After our first dose, we had to wait 15 minutes, but after the second (and being reassured that we did not have concerning side effects), we only had to wait 10 minutes.

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7.  Some symptoms might be less intense this time, yay!

While I still noticed thirst this time, it was less intense and only lasted the first night / day.  Also not present?  Shortness of breath, which I did not enjoy the first time around, and was glad to not have to deal with this time.

***

8.  Some might be worse (but short-lived!)

This time random body aches (one knuckle, one elbow??) were more intense and I woke in a lot of CP related pain in the middle of the first night (which never happens.)  This is likely due to exertion / climbing in and out of a car.  Was fairly manageable with Ibuprofen and CBD spray and relented after a day.

I noticed a slight headache (slight, I think, because we prioritized hydrating.)

Fatigue was intense.  

Needed two naps the next day and one the day after.

But after day one post-vaccine, I felt 80-90% better.

***

9.  If you are a person with a period, the vaccine may change it

This does not necessarily mean that it will be alarmingly heavy (thought it may.)  It might also mean it's lighter or more evenly distributed, depending on your cycle.

***

10.  You'll be okay

These are still pandemic times and it's still intense and worrying but being vaccinated can only help.  So get vaccinated if you can, and if you can't, know that there are those of us out there who are getting vaccinated to protect ourselves -- and also others.

***

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