Top 10 Posts From 2021

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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.

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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.

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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.

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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.

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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.

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

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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:

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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!”

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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.

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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.

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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]

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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.

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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.

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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

@EmilyEmily317

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

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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:

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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.

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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.

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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.

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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.

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

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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.

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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.

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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.

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

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Find out more about Alice Kina Diehl:

IMDB / Instagram / Rollin Stoned 

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

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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:

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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.

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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.

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

AMANDA:  Loss of job, if you have one.

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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.

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

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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.

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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.

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

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

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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:

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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.

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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.

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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.

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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.”

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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.

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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. 

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

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Connect with Tara on Twitter:

@TaraJean

Unpacking "I Can't": An Interview with...Me

462 words

4 minute read

“I can’t.” Sarah says, and the words taste like victory in her mouth. Growing up unallowed to say the C word, Sarah relishes it now.  “I can’t open this.”

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When a friend of mine read this excerpt of my current novel, her reaction was huge.  And she recognized, as a fellow disabled person, how momentous it was for a disabled character to be able to utter the words, "I can't."

That led to a pretty deep discussion and that led us to discussing the possibility for a blog post, and that led Tara to suggesting that we talk to more of our disabled friends and acquaintances to find out their relationship with the phrase, "I can't."

So many friends volunteered and their responses were so good that I decided to share their interviews individually.

Here's mine:

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[A black and white photo shows Tonia, her head in her hand. She's not smiling.]

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

TONIA:  I think, especially in physical therapy (from ages two to twelve) I was not listened to when I said, “I can’t.”  I was instantly told, “Yes, you can.”

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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?)

TONIA:  “I can’t,” for me, means I literally cannot physically do what’s asked of me.  Sometimes because of my CP and sometimes even because of my C-PTSD.

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

TONIA: At worst?  Assault.

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

TONIA:  I rarely said, “I can’t”, but when pushed to walk with one crutch while carrying something in my free hand and being screamed at the entire time.  My spasticity kicked with the stress of the situation and I fell on my knees.  I was pulled to my feet by my hair and told to “stand the **** up!”  

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

TONIA:  I felt worthless and degraded.  I felt deeply misunderstood and deeply unloved.

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

TONIA: The first time I set boundaries as an adult, it was terrifying, and led to rounds of harassment on and off for years.  We still occasionally deal with this, but do our best to keep our boundaries in place.

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Anything more you’d like to add?

TONIA: When a disabled person communicates a limit, practice believing them and offering help, rather than pushing them to ignore it.

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UNPACKING "I CAN'T" SERIES.  INTERVIEWS WITH: 

 Tonia / Tara / Amanda / Alice / Emily / Kayla / Anonymous / K

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What's So Wrong With Self-Advocacy?

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9 minute read

“How come you can advocate so well for other people, but you can’t do it for you?”

“[Self]-advocacy only counts if you talk face-to-face, because people take writing the wrong way.”

These are some harmful things I was told 5 years ago in the aftermath of dealing with countless access barriers, blame for those barriers and resistance when I put up a boundary to protect my health and safety.  

Related: Things I Want to Tell You But Can’t

For these reasons and more, Tara and I want to unpack what’s so wrong with self advocacy?

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What do we mean by “self-advocacy?”

TARA: In simple terms, self-advocacy is defined as speaking up for oneself.  

The word seems to have been first used by activists during the disabled civil rights movements of the 1960s and 1970s. Now, though, self-advocacy is most often used by a majority nondisabled population. The education system, and by extension, nondisabled parents of disabled children, view self-advocacy as a central part of most IEPs.

For the purposes of this post, we will be looking at the term through a nondisabled lens.  

TONIA: I honestly despise the term self-advocacy because it seems to now be exclusively used by nondisabled people about us.  They never use the term about themselves.  It seems to be something they feel they need to teach us.

It grates on me the same way “special needs” does in the sense that I don’t believe we need a special term for something that everyone does.

TARA: It does feel like a redundant (and harmful) euphemism!

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Isn’t self-advocacy a good thing?

TARA: Is standing up for oneself good? Sure. However, self-advocacy on its own in the face of systemic oppression does not lead to systemic change.  Self-advocacy is now largely used to place the onus of systemic oppression onto disabled people.

TONIA:  Thank you for summing this up so well!

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How is self-advocacy connected to ableism?

TARA: Self-advocacy attempts are too often not taken seriously. They are fodder for a cute story on Facebook or an “inspirational” moment. The other side of the situation is the reality that sometimes, self-advocacy of a need or a boundary leads to abuse. Both the inclination to minimize and abuse are rooted in ableism. 

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How is self-advocacy about nondisabled people?

TARA: Nondisabled people will often center themselves or each other in a disabled person’s self-advocacy attempt, because of their role in helping the disabled person to master the skill. Either the disabled person is expected to share the achievement, or their achievement of self-advocacy is solely due to the tireless work ethic of nondisabled individuals in a disabled person’s life. 

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How might disabled trauma responses be at odds with self-advocacy?

TONIA: My primary trauma response (when not encountering threat or violence) was to fawn -- that is to immediately move to people-please to avoid any conflict.

That meant that telling someone who wanted to help me “I can do it myself” felt dangerous.  Because as a lot of nondisabled people know, refusing help by nondisabled people can make them mad.

[Tonia and Tara just before their eighth birthday, quietly ogling a wedding cake.]

Being forced to say no to offers of help (even from authority figures) felt like trauma to me and often moved me into my other primary trauma response, which was to freeze.  Either way, I was not doing self-advocacy right according to nondisabled people in my life.

TARA: There is an entire compliance culture that is specifically in place when a person is disabled. Disabled people are expected to endure painful or downright abusive therapies, surgeries or other "treatments." We often rely on a freeze or fawn trauma response as our only course of safety. And then, somewhere down the line in school during an IEP meeting, we are "called out" for the involuntary ways our brains are trying to keep us safe. We are too compliant for the education system. We've failed at being assertive and need a new goal - self-advocacy. This puts the onus of our oppression onto us. Any new issue that pops up is not due to systemic oppression, it is due to our failure to self-advocate. 

(And if we succeed at it? Well as I shared earlier, that is either really cute or inspiring, or our parents and team pat themselves on the back for doing such a good job with us.)

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How is self-advocacy weaponized to keep disabled people compliant?

TONIA: Having grown up with self-advocacy as a goal on several of my IEPs, I know firsthand how this goal is used to silence us.

My so-called “goals” for self-advocacy were based on my teacher's and or my peers' judgement. They (as nondisabled people unfamiliar with my disability) were in charge of determining what I needed help with and what I did not.  

So, nondisabled people decided when I needed help.  Add to that the layer of forced politeness.  I had to “appropriately turn down help.”  And I also had to instinctively know when to thank “helpers” who swooped in and gave help I did not need, lest I get noticed by a nondisabled adult and the issue reported at the next IEP meeting.

And yes, I went to school a million years ago, but I see evidence of this even today.  Nondisabled parents will say:  “I taught my child self advocacy, and they used it against me!” when their disabled kid wants to choose their own hairstyle.

Self-advocacy is used as a tool to keep us compliant and to control us.  Because whenever I (or other disabled people) actually advocate for ourselves?  We are called rude or angry or ungrateful.  The flipside of this?  We are also blamed for being “overly compliant” even as teachers and parents admit having compliant disabled students is easier for them.

TARA: You touched on a really important point, Tonia. Tone-policing is a major problem for marginalized individuals. When it comes to self-advocacy for us as disabled people, the nondisabled expectation is that we do so in a calm, polite and mild manner. Attempts to stand up for ourselves that fall outside of these expectations are labeled as outbursts. Nondisabled reactions to a disabled outburst can range anywhere from disapproval to punishment, abuse, incarceration or homicide. Multiply marginalized disabled people tend to face more severe reactions to outbursts.

WHAT CAN YOU DO?

- Make it safe (no consequences) for a disabled person to communicate a limit.

- Recognize that everyone naturally advocates for themselves, because everyone communicates in some way.

- Don’t put limits around ways disabled people can advocate.  Don’t force face-to-face interaction, verbal communication or politeness.

- Trust the disabled person in your life if they indicate that they are encountering ableism.

- Don’t expect a disabled person to navigate ableism alone.

- Use your privilege! (Everyone has some!) Safe and effective advocacy against systems of oppression requires the partnership of nonmarginalized (or more privileged) persons. 

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