Counter-Narratives

Writing New Stories Instead of Debating Harmful Ones

Photo by Debby Hudson on Unsplash

I’m so glad you’re here! Whether you’re a free subscriber or a paid supporter, Tiffy, In Bloom is a space where I can share my journey of growth, vulnerability, and storytelling.

For all of my free subscribers: Every post here is open to you. I share my stories, my reflections, and my truth because it matters to me that this space is welcoming and accessible. Your presence is enough.

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Thank you for seeing me, for supporting this space, and for helping us bloom.

I’ve been busy online these past few days. If you follow me on Facebook or Instagram, then you know that I let an Autistic creator who was described as “the strongest advocate the community has” get under my skin. Bad. And I don’t like to admit that, but I also do myself no favors when I lie to myself.

My boys aren’t my world, but they are an important part of it. They are pieces of my heart that beat outside of my chest. You know who I am when you know who they are. I won’t just die for my babies, but I will live for them. They are not my reason for breathing, but they make the breaths I take easier. I will set fire to this whole planet behind them. So, when someone refers to my child as a “human meat puppet” for how he communicates, my first instinct is to let rage take over. And I let it do just that. No regrets.

Many called me “sensitive.” Okay. And? I feel everything behind my children. I make no apologies for that. That’s why I am a damn good mama.

This person didn’t just “share online.” She shared online to an audience. Of over a million across platforms. She framed a narrative. And sometimes, that’s something that you cannot let go unaddressed.

They built a platform on the backs of Nonspeakers and Autistic individuals with higher support needs. And she masks it as “advocacy.” The cosplay of those she works with and with a platform as large and wide-reaching as hers, you cannot help but wonder if the content for her skits comes from the very real lives of her clients. I couldn’t imagine finding my child’s story acted out in some kind of reenactment online.

However, I won’t be swallowed within a back and forth with her content, or her audience. I speak my piece, then protect my peace. And that of my son’s. Because I feel that my energy is best channeled elsewhere.

I write stories. Based on my life and that of my children’s. Where someone can frame harmful narratives around my children, I can create counter-narratives. This pen is powerful. I can direct the world’s perception of my children with just a few words. That is an immense responsibility and one that I need to focus more on. I am distracted when having to respond to another’s ignorance being framed as support. If I engage long enough, I will slip up. I will share more of my children than I want. More of them that is not for public consumption. Because I will be trying to push back on the harm caused by massive platforms with loyal followers and feel the need to defend our life and choices. That urge will grow stronger and I will give in. So, I often bow out early.

Ain’t nobody with no experience of my life gonna tell me more about my life or my children. Eww.

I prioritize my peace these days. But part of that peace comes with dropping a lot of rhetorical questions and points of reflection, then moving the hell on.

This is one of those times.

I have two things to talk about when it comes to Nonspeakers and motor-based communication. I thought about leaving it alone but I felt it was important to talk about them because I seen a lot of “support” from folks who were pushing back on harmful rhetoric such as “human meat puppet” but they were dancing around in their comments because they wanted to sound reasonable to skeptics and I simply do not care about them people’s feelings to do that.

They are probably still too far outside the blast radius to offer up support that doesn’t still throw a good portion of Nonspeakers and their families under the bus. Meh, I don’t care enough to analyze the “why” they took the positions they did; I just explain what it looks and feels like to those who matter most.

Before we proceed, this should go without saying, but all instances of “you” are generalizations. If it doesn’t apply to you, it doesn’t apply to you. Don’t be trying to stuff your feet in shoes that ain’t for you, and then hollerin’ about you “hurt.” How? This wasn’t about you you, it was about them other yous.

Ok, let’s get after it.

I saw a lot of “Facilitated Communication (FC) should be criticized, but…” framing, and that is harmful too. It ain’t loud like “human meat puppet,” but still harmful.

The problem you’re having is that y’all ain’t the ones absorbing the message. My son’s Nonspeaking friends and families are.

Y’all could be like, “There are some legit concerns of FC, but dehumanizing language is uncalled for…” and my Nonspeaking friends, families, and practitioners hear, “well, yeah, of course you deserve respect, but your communication is still kinda suspect.”

Many Nonspeakers still use FC. Some started their Spelling journey with it. Some still use it intermittently. Some need it only when fatigued, dysregulated, or ill.

So, I guess the price of admission to the conversation is to throw FC under the bus, and that sacrifices real people who still rely on this form of communication, whether full-time or every once in a while.

It’s possible to oppose misuse of power or abuse without stating an entire population’s communication is invalid.

It’s just that y’all find it easier to defend a motor-based communication if it exists with as minimal support as possible, preferably none. And FC doesn’t fit that for you.

Respect shouldn’t be conditional on independence.

I wouldn’t offer up FC users as collateral to prove I was reasonable. Mostly because I am not reasonable when it comes to my kids.

Next thing, skeptics are telling us “parents are talking for their children,” “letter boards are human meat puppetry…” And I want to know, if we were controlling the messages of our children:

What benefit is that to us?

What is the damn incentive?

If we were to still be controlling their messages, we still wouldn’t know when they were sick, or what hurts… still wouldn’t know their preferences, sensory needs, discomforts… wouldn’t know exactly what it is that they want to wear or avoid or change…

Nothing would be easier.

Nothing would be gained.

If Speller parents wanted to speak for their children, they could just do that. They wouldn’t need the letter board, the lessons, the regulation strategies, the training, the time, the patience, the funds, the emotional labor…

They could just… talk.

The reason that parents go through this and stick with it is because with all this work, all the training, long days and even longer nights, sore arms, emotional highs and lows… is because they have seen that something is actually being communicated.

Seriously, skeptics look at one moment and decide, “welp, that’s their story.” Nah, it’s not. I’m not living a single moment with my child; we are living within a trajectory. We are heading somewhere. Parents ain’t doing Spelling and choosing to be CRPs because they want this to be a permanent position for them. They do it cause they know that communication doesn’t just pop up. CRPs come before independence.

CRPs are working towards being out of a job one day. Meaning once their child is open with them, they will move on to teaching someone else to be CRP. They will move towards less support. They will move towards more independence. They are always moving towards fading their support. And that ain’t manipulation. They are growing towards something.

Spelling is a journey that can take years. And if you are only seeing moments in someone’s life and wanting to apply neurotypical standards of communication to their life, you are missing the point. Our children’s nervous system cannot be rushed. Neither can his motor planning. His history is full of trauma we have to learn to work through. None of this can be rushed.

People want communication to look neat and follow some timeline you created based on how you perceive communication. They want to feel comfortable with a Spellers communication. What body outside of your own is supposed to care about your comfort?

What they are really trying to say is, “if it were real, it would already look independent.”

I am saying that it’s not my problem that they are confusing unfinished with fake.

These journeys aren’t done. They still walk this path. However long it takes.

And if you ain’t never had to wait years for a single word to emerge, then chances are you don’t actually know what growth looks like.

Ride a lane that’s safest for you to be in. And stop trying to get in our car.

People often challenge me with academics, as if I haven’t obtained two degrees to go toe to toe. I don’t have a problem with academics; I take issue with it being limited. And I also know that I have earned every bit of my positions through living within our experiences. I am not being theoretical; this is our lives. And that matters more than the schooling I have.

I am not arguing over our lives anymore. This is testimony.

You watched a documentary, read a news article, looked at some old studies that weren’t designed for people like my son, and you’re going to tell me more about our experience because of that. You are going to tell me my son is being harmed because someone else was. My son cannot live his life by the possibility of risk. All interventions carry harm. They can harm.

My son was thirteen years old and they were still doing 4-piece puzzles, PECS with three choices, and his app had only 2 options on his boards.

My son has been turned away by 63 speech therapists within a decade.

TEN YEARS.

You don’t get to preach to me about harm when the field that was supposed to help him the most, didn’t think he was even worth reaching. I have heard every excuse they had for not wanting to work with him. And most of the reasons had to do with their perception of his intellect. They didn’t feel he was intelligent enough to grasp the concept of using pictures to communicate.

I had to teach my son what he knows on his Proloquo2Go by myself at the age of thirteen because no one wanted to work with him. ME!

I just don’t care what someone else has to say about what I do with my children. I spent most of my son’s life trying to do things the way y’all wanted me to. And I wasted YEARS. Time I cannot get back.

So, when someone tells me that something I choose to do with my child is harmful, meat puppetry, invalid…

I really don’t care. I just don’t.

I support whatever form of communication my son lands on. I am not going to prove our lives to you. I will push back on harmful narratives that have a great influence on shaping how the world sees my son, and how my son sees himself.

But I will do that through my stories. Our stories.

In my posts. In my newsletters. In my trainings. In my Keynotes. In my author visits. In my workshops.

In my books.

A Day with No Words shares my boy with his tablet.

How Do You Spell Belong (2027) shares my boy with his tablet and a letter board.

Because as my son grows, his access needs change. We explore more things. And if I write books about my son and communication, I want them to show the options that are available to him as much as possible.

Because I don’t ever believe in denying or restricting access to communication.

~ Tiffy