Monday, January 10, 2022

Unpacking "I Can't": An Interview with Kayla

721 words

5.5 minute read

It's time for yet another installment in the "I Can't" Series! This week, we're hearing from Kayla. I really loved her insights!

Here's what she has to say:


***


Were you allowed to say “I can’t” when you were growing up?

KAYLA:  Actually, yes, but my grandma definitely had to tell other adults in my life to respect when I said it. “She knows her limits” is something I remember her having to insist more than once when I was a kid.

***


What do you mean as a person with a disability when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?)


KAYLA: For me, it’s definitely fluid. 


There are some things I objectively can’t do (like running, for example). 


There are other things that I can sometimes do and sometimes can’t. I can get into my sister’s truck, for example, but I can’t get into every single truck, because some of them are way too high off the ground. It’s also dependent on energy levels. If I’ve worn myself out that day, something I could do on a good energy day might become something I can’t do. 


Finally, there are some things that maybe I could do in theory that I will say I can’t do, because I don’t believe the possibility for injury is worth it. I can’t do this safely should be just as valid as something I can’t do at all.


***


What risks or vulnerabilities exist in saying “I can’t” as a disabled person?


KAYLA: Not being believed for SURE. 


On numerous occasions as an adult, it has been assumed that I don’t want to try when I say that I can’t, instead of my word being taken at face value. 


People want me to try it their way instead of just trusting that I know my own body, and what I can and can’t do. 


At worst, when it turns out that I’m right and I can’t do a particular physical task that’s been asked of me, it’s assumed that I’m not trying hard enough. 


This is very frustrating and invalidating.


***


Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received? 


KAYLA:  Weirdly enough, my limits regarding “I can’t” seem to be received better by people who know me less well. Some people in life that I’m close with have actually told me that they’ll “forget I’m disabled” because there are a lot of tasks that I have managed to figure out creative solutions for. In my experience, friends hold space for the boundary that is “I can’t” in a way that certain family members do not.


[There was a time] when I was pushed too far recovering from surgery. My grandma wasn’t there to advocate for me. I KNEW I was gonna fall but the therapist made me do it anyway even after arguing with her. Sure as sh*t, I fell and she didn’t catch me. 


Adults think they know better than kids when it comes to their OWN LIMITS and that is so freaking awful.


***


What message was conveyed to you because of moments like this? 


KAYLA: In a way it’s like another form of infantilization. Like, “Actually, I know your abilities better than you”.


***

[Kayla (right) as a young child, posing with her mom (left). Kayla is smiling, and they're holding a stuffed animal between them.]
[Kayla (right) as a young child, posing with her grandma (left).
Kayla is smiling, and she and her grandma are holding a stuffed animal between them.]

***


Have your experiences contributed to the way you set or struggle to set boundaries?


KAYLA: For sure. Now that I’m older and have found more people that are also disabled, it is easier to recognize and call out a lack of respect for my boundaries regarding what I can and can’t do as what it is: ableism. 


Ableism looks like a lot of things, and recognizing it has been so helpful for my growth and development as a person. I’m disabled, and I’m allowed to have boundaries without being questioned or disbelieved. If people don’t respect that, they are being ableist. I am not being difficult, not trying, whatever negative nonsense is being suggested about me. Other people’s ableism isn’t my fault.

Monday, January 3, 2022

13 Reasons Why: Alex and Outbursts

2,252 words
17 minute read

TW: GIF warning
mention of emotional abuse

Spoilers for Seasons 2 through 4 of 13 Reasons Why


***

We’re back! 

Yes, we know that this was technically our Summer Blog Post Series, but we needed to take a break, to come back to the last few topics fresh! Thanks for your patience! (Shoutout to Heather for your recent feedback - it really helped!)

This week, we will be discussing the nuanced representation of outbursts and brain injury in 13 Reasons Why, and why this representation matters to us on a personal level. 

***

We had an interesting conversation while discussing ideas for this post where we remembered an interaction we had after Tara’s brain injury.  For context, this was the late 90s.  There was no media representation - no Alex Standalls to refer to - in order to get insight into this specific experience – what some might call an “outburst.”  What do we want to share about this time?

TONIA: In the months after your brain injury, I offered to help you with your homework.  At 16, my understanding of what happened to you was quite simplistic.  I knew you struggled in the areas I could see (reading and writing, to name a couple.)  So, I read questions for you and asked what you wanted the answer to be.  You kept saying: “I don’t know.”

TARA: And I think I kept getting more and more frustrated each time I said it, right?

TONIA: Probably! And I didn’t take those cues…

TARA: And at this point, I didn’t have a ton of mobility, so I spent the majority of my day in common rooms. I did PT in the family room, OT and schoolwork at the kitchen table. There was usually a TV on in the next room. Someone talking on the phone somewhere, and just the noise of six other people in the house - one being a toddler. Not a quiet place for cognitive work!

Needless to say, it’s a safe guess that I was struggling with filtering at this point as well as depression. You mentioned that I kept responding, “I don’t know” to your questions. You also said that I may have said, “It doesn’t matter.”

At that point, we didn’t know anything about aphasia. Now, I can say that “I don’t know” is a really common filler phrase when I’m overloaded. It’s something I can say in the moment that buys time. “It doesn’t matter” really feels like it’s depression-related to me. (As in, “School is insignificant because everything has changed, and I don’t know what to do.”)

Tonia, how did you interpret my responses to your questions as a 16-year-old with no context about communication disorders or brain injuries?  

TONIA: I was frustrated.  

Growing up disabled, I took your brain injury in stride and with the context I’d been given about my own CP: “Tonia’s just like everyone else, she just uses a walker,” (at the time.)  So, I thought, “Tara’s still the same.  She’s still herself.  She just has a brain injury.”  To me, this meant you struggled with headaches, with the trauma of surgery, and with various physical tasks, like I mentioned above.

I had no idea your communication had been impacted.  So, I thought you were just kind of over it?  Like, you didn’t want to do homework, and I was being a big pain in your butt by talking about it.

TARA: You interpreted my attempts at communication as noncompliance. As passive-aggression. Is that right?

TONIA: Yes.

TARA: What happened next?

TONIA: So, I’d read aloud from a textbook and then ask you what you wanted me to write down for your answer.  I kept asking, because I wasn’t getting an answer.  Eventually, I was like, “Just pick something.”  

And I believe you said: “You pick something.”  

And I was like: “...This isn’t my homework…” We had essentially ground to a halt, and I was exasperated.  I snapped: “I’m trying to help you!”

And what did you say?  

TARA: “YOU HAVEN’T DONE ANYTHING TO HELP ME!” 

TONIA: And then, I left.  Because my feelings were hurt.  

But do you want to say anything about how you may have felt in that moment? (I know you don’t necessarily remember this firsthand…)

TARA: I don’t remember anything about this night in particular aside from the last two sentences - what you said and how I responded.

I remember feeling, as a rule, completely deadened when it came to emotions. I suspect now that I was dissociating as a coping mechanism, so everything just felt far away and unreal, but it ached at the same time? Very few things were able to get through to me emotionally. But this moment was one of them.

TONIA: It got through to you? How so?

TARA: I think because you were being authentic with me, instead of masking your feelings? Your authenticity broke through to me and triggered my authenticity, I think.

TONIA:  Because, let’s be real, I wasn’t helping you by badgering you endlessly…

TARA: You’re referring to what I said?

TONIA: Yes.  You mentioned it triggered your authenticity.  Is that not what you meant?  Your response that I hadn’t done anything to help you?

TARA: I meant that you reached me on an emotional level, past dissociation and depression. In that moment, when I responded to your words, I felt such a strong rush of adrenaline. I think the term is “flooded,” when you are flooded by stress hormones? Prior to this, I had a very even keel. I may have felt overwhelmed, but I rarely reacted to it. However, due to my new injury, I was much more uninhibited in certain moments. 

So, that’s the memory I have of this exchange. A few words. And a huge rush of emotion.

TONIA: So, can I ask…  What did you mean when you said I hadn’t done anything to help you?  Is that what you meant to say?

TARA: I’m sure I felt like maybe you weren't being particularly helpful in that moment. But the overriding feeling that I’d meant to convey was, “I don’t think anyone can help me.” 

TONIA: So, you were feeling helpless?  Or hopeless, maybe?

TARA: Yes, and just sort of useless too.

TONIA: Oof.  I’m so sorry about that.  Thanks for trusting me.

While you were writing this response, I found a note you wrote me around that time.  Less than five months after your brain injury. I feel like it is, in part, a direct response to this interaction we’d had.  Is it okay to share an excerpt?

TARA: Sure.

TONIA:  So, you wrote:

...Accepting help is hard for me lately.  I feel like a huge dork cuz you know so much more than me!  I don’t know what else to do except act like the dork that I feel like.  It’s no excuse, I know.  …I love you with all my heart and soul – but I resent you, too.

TARA: I remember writing that. It felt cathartic to finally be able to express myself - to say what I meant to say.  

TONIA: Honestly, same.  I felt encouraged reading your note, because it felt like after months of isolation from each other, we were beginning to connect again.

TARA:  But how did our homework exchange that night affect you, Tonia?

TONIA:  I felt like…if I can be frank…  

TARA: Please.

TONIA: I was right there with you feeling helpless, hopeless and useless.  I felt like there was nothing I could do that would make things any easier or better for you.  

And honestly, that feeling persisted for about 15 years.  It really impacted our relationship, until we were able to have our first conversation about this exchange.

TARA: Because we didn’t know what we were dealing with, disability-wise. We didn’t have representation of any kind. 

TONIA: And more than that we didn’t have any adults in our world (the medical community or otherwise) who knew how brain injuries felt, or how they actually impacted people.  You had no idea all the ways it impacted you, so you couldn’t communicate that to me.

TARA:  And that really damaged our relationship for a long time, until we started investigating things for ourselves. Finding the words. Eventually, seeing some media representation…

TONIA: Yes, the media representation came about 20 years later…and it wasn’t good.  But the one good thing it did was that it got us talking.  For the first time, we really discussed aphasia.  And I realized your brain injury does impact your ability to communicate. And that you can’t always say what you mean.

TARA: I think that’s a huge reason why these posts and media representation means so much to us. I’d love to circle back to this exchange as we continue to discuss Alex and 13RW.

TONIA: Definitely.  I’d love that.

***


[Alex: I'm sorry I'm not fucking normal, Dad!  I know that's so hard for you!]


13RW does something interesting in that it normalizes the concept of teen boys having outbursts of emotion. Prior to Alex’s injury in episode 1x06, he has a loud confrontational outburst with another student. 

Post-injury, Alex’s outbursts are acknowledged and deescalated. Can we talk about the novel way people in Alex’s life react to his communication? 

TONIA:  Well, it is definitely novel!  Even in recent years, so-called outbursts by disabled characters in the media are responded to with nothing short of abuse.  Seeing calm responses is groundbreaking.

Are there any specific scenes you want to discuss, Tara?

TARA: There’s a scene at the end of the camping trip episode (4x04) that I found particularly interesting. In it, the seniors are passing a conch shell (deemed the “sharing shell”) around as they take turns talking around the campfire. When it’s Alex’s turn, his friends quietly worry that he is going to confess to Bryce’s murder. Instead, he confesses to really hating camping. He then throws the shell at a nearby tree, where it shatters. The seniors and chaperones laugh.

It’s a relatively small scene, but the framing of it feels like a big deal. I can easily envision an alternate version of this scene, where the reaction to Alex throwing the shell is disapproval - where he is shepherded away to calm down. Instead, the throwing of the shell was taken as a legitimate expression supporting the words Alex said. 

More than that, this moment was received with humor, which is rare cross-culturally. 

***
 
Something we say often between ourselves is “behavior is communication.”  We’ve also discussed the concept of “self advocacy” recently and how it’s quite restrictive.  But can we discuss how Alex’s outbursts are often actually advocacy?

TONIA: Yes, self-advocacy is often viewed through a narrow lens. Attempts at self-advocacy are often dismissed because of a disabled person’s loudness or intensity.  But often if we are soft and quiet, we aren’t believed or taken seriously.  Our advocacy has to be loud in order to “make a dent.”

TARA: There are many moments in the series which do portray Alex loudly and demonstratively self-advocating. (I’m recalling 2x01, where he asked his mother to see his note.) I love that 13RW shows that imperfect self-advocacy is still legitimate communication and can be taken as such.

TONIA: Yes, I agree!

***

We think it’s also very important to point out that not ALL of Alex’s outbursts are advocacy.  There are a couple of times when (because of steroid use) he is quite intimidating and emotionally abusive.  Can we talk more about this nuanced representation?

TONIA: No human being is one-dimensional.  Alex is no exception.  His drug use definitely contributes to him being confrontational in a way that is abusive.  I honestly really appreciate that these nuances are shown.  Because then we see that Alex is not just solely “good” or solely “bad”, he’s some of both, as everyone is.

TARA: In 3x07, Alex confronts Jessica. He towers over her as she sits, intimidates her and yells at her publicly. As Tonia said, we get to see nuance over the course of the series, with regard to brain injury representation, which remains a rare thing.

***

Alex having outbursts does not change throughout the series.  It’s people’s reactions to him that are noteworthy and which create novel disability representation.  What do we hope audiences take away from watching a show like “13” in terms of outbursts as communication.

TONIA: I hope it will help people widen their scope of what they deem “acceptable” communication and kind of get out of their own way a bit, in terms of preconceived notions and ideas.  (I say this as someone who regularly comes up against my own in our interactions.)  Not everyone’s communication looks the same.  And it’s a good reminder to listen to what the other person is saying and not how they’re saying it.

TARA: I hope that it helps people to see different ways to react to loud, blunt, and demonstrative communication. That it’s possible to deescalate these moments by taking the time to hear and respond to the message, as opposed to tone-policing its delivery. 

TONIA: Oof. Yes. Thanks for talking about this with me!

TARA: Of course! I love it!

***

***

Have you seen 13 Reasons Why on Netflix?  

Did reading our conversation about Alex and outbursts help you realize anything or notice anything you hadn't registered before?  

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

***

Don't forget to connect on Facebook / Twitter / Instagram

Connect with Tara on Twitter @TaraJean


Friday, December 31, 2021

Top 10 Posts From 2021

778 words
6 minute read

2021 has been very different.  

And it's been very much the same.

We are still quarantining, for example.  I'm still writing.  Still reading.  Still watching shows.

But...

We also got new leadership this year.  We got vaccinated.  I've been trying to break new ground with the fiction I write, and persevere despite the negative feedback.

And as I have off and on since I started this blog, I like to take a look back and see which posts resonated with readers.  So here are my Top 10 (Most Viewed) Posts from 2021:

[2021 can be seen in purple over the top of fireworks]

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10.  10 Things To Know When Getting Vaccinated With CP (June, 2021) - This summer, after taking a few days to recover from the gnarly Moderna vaccine, I wrote this post without much forethought.  The only thing on my mind was that the vaccines were (and still are) so new that I was sure there were people out there wondering about getting vaccines for themselves or their loved ones with CP.  I'm glad this post made the list this year.  Definitely important.

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9.  When CP Leads to Falling and Falling Triggers Past Trauma (September, 2021) - If you've been here for any length of time you know how much I love tackling tough topics via conversation posts with my sister. This one was no exception.  I'm always down to discuss issues I don't see talked about much, and this was definitely one of those!

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8. How Unrealistic IEP Goals Put Me in Danger as a Disabled Child (April, 2021) - This post was cobbled together from a post on my private blog and something I wrote years ago and only showed one other person.  But ever since 2020, I've decided to speak out about some of the things I've kept quiet about for years.  The abuse I endured as a child is one of those things.  Disabled children are not exempt from maltreatment.  In fact, we are more at risk than most...

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7. Disabled People, Our Right to Life Exists Even When We're 'Noncompliant' (February, 2021) - Sometimes, a post just springs out of me.  And one night, after being gobsmacked at a comments section that began with a well-meaning discussion question and then devolved, I knew I had to address some things.

***

6. When My Ableist Teacher Used My Report Card to Praise My Parents (May, 2021) - If you know me, you know I keep everything relevant.  And occasionally, I sort through all the things I've amassed.  So, when I found an old report card from the fourth grade -- and saw what was written on it -- I knew I had to blog about it.  Especially, as it's a thing that still happens today.

 ***

5. Medical Trauma and CP (October, 2021) After reading one too many posts by nondisabled parents who claim that their child with CP "got over their trauma from X medical procedure with no anesthesia really fast" and seeing a series of deeply disturbing photos of a child with CP enduring such an (unnecessary) medical intervention, this post was born.  I put a lot of myself into this one -- especially because I've never read anything else on the subject.  I'm really glad it's in the Top 10.

***

4.  Let's Talk About Cerebral Palsy and High Pain Tolerance (November, 2021) - Along the same lines of the above post, I think, there is a lot of erroneous information out there regarding people with CP and our pain tolerance.  I feel like the notion that we have high pain tolerance might be used as a kind of subconscious justification for all manner of invasive unnecessary treatments.

***

3. Things I Want To Tell You, But Can't (March, 2021) - Originally written on a private blog in December, 2016, I wrote this less than a week after the events in question.  With very minimal edits, I made the choice to keep the content the same.  Honestly, I was terrified to post this one and I was shocked by how it was received.

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2. 10 Things No One Tells You About Aging With CP (March, 2021) - I see the same questions time and time again from both adults with CP and nondisabled parents, regarding aging and CP.  So, I thought I'd make a list.  And it seems it's done pretty well.

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1. Bridgerton's Rape Scene and How It Connects to Disability (January, 2021) - I was such a fan of the show originally -- but this scene remains one of the most disturbing things I've witnessed -- as well as the majority response to it.


*** 

Don't forget to connect on Facebook / Twitter / Instagram

Monday, December 27, 2021

Unpacking "I Can't": An Interview with Emily Ball

327 words
3 minute read

I'm seriously loving this "I Can't" series.

This week, I'm sharing Emily Ball's responses to these questions and I've got to say, I love her response to the risks and vulnerabilities question.  Be sure to check that out, as well as the rest of her responses.

Here's what she has to say:

***

Were you allowed to say “I can’t” when you were growing up?

EMILY:  No.  I mean, I did, but it was met with variants of “Yes, you can!”

***

What do you mean as a person with a disability when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?)

EMILY:  I mean that I physically cannot do something because it is too physically tiring, or I am literally unable to perform said task.

***

What risks or vulnerabilities exist in saying “I can’t” as a disabled person?

EMILY: …You risk being told to perform [a] task again to prove yourself. You have people watching you, so you feel “on” in a sense.

***

Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received? 

EMILY: Yes, and it was received [with a] brush off, such as “Sure you can, never say never!” etc.

[Emily smiles for the camera]

***

What message was conveyed to you because of moments like this? 

EMILY: That I should try to conform to [be] seen as able as possible.

***

Have your experiences contributed to the way you set or struggle to set boundaries?

EMILY: Yes absolutely. I struggle because I feel as if others expect things of me and if I can’t / [don’t] want to conform, I’ve failed.

***

Anything more you’d like to add?

EMILY: Sure. Never tell other adults “Please don’t distract so-and-so” [when a disabled person says they can’t do something], because I [was] always internally begging for a distraction - there’s only so much we can tolerate.

***

Connect with Emily

Monday, December 20, 2021

Unpacking "I Can't": An Interview with Alice Kina Diehl

466 words
4 minute read

If you've read Tonia Says over the years, I know you'll recognize who I'm interviewing next.  

I first blogged about Alice Kina Diehl after seeing her as emergency dispatcher Stephanie Gaskins on the FOX show 9-1-1.  Months later, her wife, Amanda, contacted me online and I was able to do this interview with Alice about her acting career.  And over the summer, I interviewed Alice again about pandemic life.

So, I was thrilled that Alice said yes to being interviewed again about the complicated relationship many of us disabled people have with the phrase, "I can't."  Alice is no exception.

Here's what she has to say:

***

Were you allowed to say “I can’t” when you were growing up?

ALICE:  Yes, I was allowed to say it at home. But not at school. That was seen as a weakness by teachers.

***

What do you mean as a person with a disability when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?)

ALICE:  It means that my body is done for the day and tomorrow is a new day.

***

What risks or vulnerabilities exist in saying “I can’t” as a disabled person?

ALICE:  There can be a lot of gaslighting involved. And also loss of jobs/work.

***

Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received? 

ALICE:  All the time in school. 

And it was the same thing when I went into the regular workforce. People thought I was faking it. They would yell at my mother for keeping me home. 

One time, I tried to stay home because my friend [had] passed away, and they said that was not…acceptable, even though my disability affects my emotions, and how I process things.

***

[Alice (middle) poses with her wife, Amanda (left) and dog, Marla]



***

What message was conveyed to you because of moments like this? 

ALICE:  That our society has a lot of work to be done as far as how they view disability.

***

Have your experiences contributed to the way you set or struggle to set boundaries?

ALICE:  Absolutely. It happened this week for me. I was supposed to work three days in the industry, and I only worked one. Part of me wants to see that [as a] failure. But at least I was able to do one.

***

Anything more you’d like to add?

ALICE:  Just believe us when we say that we can’t make it for a day. It doesn’t mean that you shouldn’t hire us or include us. It just means that you have to adapt to us.

***

UNPACKING "I CAN'T WITH: Tonia / Tara / Amanda / Alice

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Find out more about Alice Kina Diehl:

Monday, December 13, 2021

Unpacking "I Can't": An Interview with Amanda Diehl

316 words
2 minute read

We're back again this week with another opportunity to unpack what "I can't" means to disabled people.  This week, I'm interviewing my friend, Amanda Diehl about their experiences with the phrase "I can't."

As you'll find, there are some definite similarities across the stories shared so far, but Amanda also discusses the impact needing to say "I can't" in the workforce can have.

Here's what they have to say:

***

Were you allowed to say “I can’t” when you were growing up?

AMANDA:  Absolutely not. If I tried, [I was told], “Yes you can.” I would then have to try.

***

What do you mean as a person with a disability when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?)

AMANDA:  “I can’t” means I’m out of spoons.  My body isn’t able to continue what it’s doing.

***

What risks or vulnerabilities exist in saying “I can’t” as a disabled person?

AMANDA:  Loss of job, if you have one.

***

Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received? 

AMANDA:  When I was a Vet Tech, I was eventually made to work 6 days a week. When I said, “I can’t do that because of my illness,” I was called several names on a couple occasions and told to suck it up.

***

[ID:  Amanda and their dog, Marla, cuddle.  Amanda is frowning.]

***

What message was conveyed to you because of moments like this? 

AMANDA:  That I needed to try harder. I know that’s not true now, but then it made me feel weak.

***

Have your experiences contributed to the way you set or struggle to set boundaries?

AMANDA:  Yup! I struggled a lot for a long time, and it’s taken some long therapy sessions to help with it.

***


UNPACKING "I CAN'T WITH: Tonia / Tara / Amanda / Alice


Monday, December 6, 2021

Unpacking "I Can't": An Interview with Tara

512 words
4 minute read

I'm still floored by -- and so grateful for -- all the responses I got from my friends in the disabled community on our sometimes complicated relationship with the phrase "I can't."

This week, I'm sharing my sister, Tara's responses to these questions.  I love talking to Tara about anything disability-related, her perspective is so different from mine.  She often thinks about things I forget to even mention.  Her voice is so valuable.

Here's what she has to say:

***

Were you allowed to say “I can’t” when you were growing up?

TARA: If I indicated fear as a young child, that was occasionally acceptable. “Can’t” was largely viewed as manipulation and / or l*ziness.

***

What do you mean as a person with a disability when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?)

TARA: Sometimes, “I can’t” indicates a firm limit, as in “My brain / body literally cannot do the thing.” And sometimes, it refers a projected overextension of my bodymind’s capabilities. And the latter, I think, can be particularly misunderstood.

***

What risks or vulnerabilities exist in saying “I can’t” as a disabled person?

TARA: Honestly, it’s opening yourself up to all sorts of potential ableism, from microaggressions to gaslighting to all sorts of abuse.

***

Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received? 

TARA: I remember being in a swimming class as a very young child. I knew I couldn’t swim, even after several lessons. 

One day, the swimmers were made to swim from one adult to another, several yards away. I sobbed and clung to the adult who held me. I don’t recall saying, “I can’t.” (An undiagnosed communication disorder made speaking in certain situations impossible.) 

The response to my intense fear and nonverbal “no” was to be pushed out into the open water of the swimming pool, where I promptly began to sink. 

I was not rescued immediately. It seemed that they waited to see whether I would begin to swim after all, before coming to the conclusion that I did, in fact, need intervention. 

[Tara, left, and Tonia, right, smiling on Christmas morning.  We are 4 years old.]



What message was conveyed to you because of moments like this? 

TARA: So many messages were conveyed by that moment: “The world is scary.” “Your feelings don’t matter.” “Your safety doesn’t matter.” “You are powerless against those bigger than you.”

***

Have your experiences contributed to the way you set or struggle to set boundaries?

TARA: Compliance culture is huge in the disability community. As such, boundaries really have no place for many of us growing up. 

I honestly had no boundaries for a very long time. It took decades for me to understand that boundaries were actually healthy to have, and that they applied to me.

***

Anything more you’d like to add?

TARA: To the adults in a disabled person’s world, please teach and honor limits, consent and autonomy. It’s so incredibly important. 

***

UNPACKING "I CAN'T WITH: Tonia / Tara / Amanda / Alice


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