Book Discussion of „A Day with No Words“ by Tiffany Hammond (long version)

*See here for a shorter version.

Today is the day: The children’s book „A Day With No Words“ by autistic author Tiffany Hammond is officially out. Today is also the day I get to review „A Day with No Words“ the book for the official the book tour. Because I live on another side of the globe (in Germany), I won’t receive the hard copy that I preordered in October until May 19th, but I am privileged to have received a digital copy of the book already.

Like very many others, I am so excited.

All the Fuzz

If you haven’t seen or heard of the book yet, let me tell you that the book is somewhat of a sensation. It’s already beginning to sell out on the day of it’s official release, it has made various bestseller lists, including all-times bestseller lists – long before it actually came out. There is what I can only describe as a movement of support from readers who actively promote the book, take„shelfies“ of the book in stores, recommend it to friends, stores and book chains, institutions, professionals, their own therapists, who buy several copies and give them away, who participate in campaigns to finance free copies to those who cannot afford it, who leave enthusiastic reviews on social media and book-related platforms. A campaign to raise profits from selling unique merchandise (more about this later) so as to provide free copies to persons who cannot afford the book seems equally successful – in fact, I can’t wait for the merchandise to become available in Germany.

Tiffany Hammond has speaking engagements and interviews in prominent TV, print and online media, readers and colleagues are organising additional events near them, and those who can travel to meet Tiffany and hear her read the book. The book readings and opening event this week have have left audiences raving, and I think more than that, perhaps hopeful and perhaps empowered.

It’s a whole thing. And there are reasons for that.

It’s not just about the book

Part of it it is less about the book and more about the kind of disability justice activism that Tiffany Hammond does with her work. Tiffany is a Black, autistic and mostly speaking mother of two Black, autistic teenage boys together with her husband/their Dad, they all live in the state of Texas, USA/Turtle Island. Tiffany’s education, writing and community work is fueled by what’s missing, by who is being left out. She sets out to educate people with more stereotypical ideas about „autism“, as well as autistic people within the neurodivergent movement who struggle to see some of the nuances that her family embodies.

In part, the fuzz around A Day with No Words is more about other conversations, and other books. Or rather about what’s been missing in other books.

For those who are less familiar with discrimination-conscious discussions around representation conscious: we know that representation matters.  It matters who we see represented in stories, in images, on screens. It matters who we see in main roles, who we see in the roles that we identify with. It matters which identities and bodies we only see in supportive roles that exist to help us learn more about the main characters and move the story line forward. It matters through whose eyes we get to experience a story or other characters and it very much matters which identities and bodies we simply do not see at all.

We know (because lots of people educate around this) that erasure (lack of representation) leads to low self-esteem on behalf of those that don’t see themselves represented at all, or that don’t see themselves prepresented favorably, with full personalities, with agency, with rich character lines. We also know that erasure in media leads to people adopting wrong ideas about groups of people who aren’t granted just representation. Unfavorable representation or erasure has a multitude of consequences and majorly influences discources and even policy making.

Representation matters, lack of representation and unfavorable depiction matters, we know it does. Discriminatory depictions in media is something that affects me personally personally as a Brown, multiply disabled, non-binary, muslim person of color and much of my own educational work has focused on it.

Tiffany Hammonds does not just talk about these kinds of erasure, but actively disrupts them and shines a light on some of the many people that have been left out. And it’s not just non-speaking autistic persons or Black and other racisalised autistic persons who have been waiting for this. Amazingly, a lot of more privileged (white, speaking) autistic and non-autistic persons seem to be getting it. Very many of us, including those of us who have been doing educational work on disability justice ourselves, continue to learn from Tiffany’s refusal to press her family into the existing and lacking boxes.

It’s also about the book

The book!

I’ll start with representation. A Day with No Words is one of too few books that center Black persons, that has Black main characters with Black families who get to experience things without the book’s actual story being about the fact that they are Black. Seeing Black main characters in beautiful images, experiencing beautiful bonds and just going about their lives is a thing of rarity.

And the illustrations by Kate Crosgrove that are inspired by Tiffany and her son Aidan are a thing of colorful beauty of their own.

To add to that, this is one of very few, if not the only English-language children’s book by a Black autistic author that centers an autistic child. It’s likely is the first visualised story that depicts a non-speaking autistic young person, not to mention a Black non-speaking autistic young person, who uses a communication device and gets to have an full story line, personality and a (mostly) good time.

This is huge.

In interviews and posts, Tiffany explains how important another children’s book with a non-speaking young person as main character has been in her family’s life.

There are – very few – but much-needed children books like The Autistic Boy in the Unruly Body by non-speaking autistic author and speller  Gregory C. Tino, but I am not aware of any that show a main character use a communication device (I’d be happy to learn if there are more).

In A Day Without Words, we meet the main character, a Black autistic young teenager, as he is woken up by his Mama, and follow him for the rest of his day.

In short rhymes that flow so effortlessly that they read like prose, he tells us about what he likes and through some of these pages, we see Tiffany’s son Aidan honored in ways that that seem all too rare, that are respectful and precious.

The main character is not Aidan, but like Aidan, he, too, likes likes a visit to the park when there is no crowd, hugging and comforting trees, Mamas voice that dances like water, Daddy’s voice that kisses his cheek like a soft summer’s breeze, spinning „barefoot on soft gras after the rain clears“ and of course (if you read Tiffany’s posts, you’ll quickly recognise this) „chicken nuggets…orange soda…a large side of fries“.

In most scenes, he is given enough space to process things, to explore things on his time, is given opportunity for informed consent. He let’s people know what he wants, what he likes, when he’s ready, when he’s done.

It’s only later in the book, when people at the park make disparaging comments towards the main character and Mama steps in to put up boundaries (only to turn her loving attention back to her son a moment later), that we see that Mama actually uses her own communication device – a green one with the same software.

In fact, most illustrations show the main character and his Mama having their devices (or talkers) either strapped across their shoulders, laid out on the park bench between them or in use while they communicate through it, sometimes showing the words and images they type in. When Mama is done placing her order through her green-framed talker at the cashier, the main character places his own – staple – through his orange-framed talker.

While A Day With No Words is intended to honor Aidan Hammond, it is dedicated to his younger brother Jojo „the one who inspires the days that brought this story to life“.  In some ways, A Day With No Words is based on the love and support between both Hammond brothers and it honors Jojo’s insight and ideas about how Aidan can be better supported.

A few years ago, Jojo made observations and comments that lead the Hammond’s to adopt days where all family members communicate without spoken words, with everyone, everywhere.

Learning to use one of the many „Assistive and Alternative Communication“ devices and methods can be challenging for anyone – in fact, I’ve been unsuccessfully (yet inconsistently) trying myself for a while now.

Many non-speaking autistic persons have neuromotor differences like neuromotor apraxia that result in their bodies and voices not (always) doing what they want them to do. When families and communities of non-speaking persons model using the same methods and technologies in actual, day-to-day situations, it is often experienced as more effective than their learning journey relegated to to fixed teaching sessions or therapy sessions (that often hold unrecognised barriers).

However, nuance is warranted around this. In fact, if I recall correctly, some non-speakers have voiced concerns in earlier discussions around A Day With No Words and the idea that speaking persons should – in a way –  try on non-speaking. To my understanding (I’m not a non-speaker so my assumptions may well be wrong here), while some disabled people do invite others to step into vague approximations of their experience to disrupt some assumptions (like Ido Kedar does here), others find a dynamic of tryong on their disabled people’s experiences for personal growth, entertainment or simlarly self-focused reasons offensive.

No experience of hours or single days can give real insight into the the layers that shape the experiences of apraxic non-speakers whose bodies will not (consistently) obey them. Experiences of disablity are majorly impacted by societal barriers, exclusion and discrimination, by the impossibility of stepping out of disability when this gets exhausting.

Those of us who (mostly) speak using our laryinxes and mouthwords need to remember that we may very well be missing important nuances around this and continue to look for non-speaking persons suggestions.

And yet, I imagine it may generate a different kind of problem-solving if different family members experience different difficulties while learning to use a specific communication tool. Perhaps most importantly, when everyone in an apraxic non-speakers family uses spelling, typing and sign language (particularly if they aren’t fluent in it), it changes the speed of conversation. It temporarily disrupts the dynamic where spellers and other AAC users only get afforded the time to communicate their thoughts when the environment is actively trying to afford it.
*if spellers and non-speakers want to add criticism or thoughts here or if you’d like to point me to other thoughts that spellers and non-speakers have communicated around this, I very much welcome that.

But is Tiffany pretending that she is Aidan’s voice?

Reactions to A Day With No Words – or to Tiffany’s advocacy in general – aren’t alltogether positive at all and I think there are two reasons for this.

1) The urge to presume incompetence

One line of criticism that apraxic non-speakers and their support persons are often met with infers that non-speakers can’t possibly have the thoughts and ideas that they do, particularly when the spellers use facillitated communication and a communication partner. Facillitated communication is based on the acknowledgement that due to neuromotor differences, typing and even pointing to letter boards might be immediately possible for some non-speakers. It involves communication support through an informed, respectful communication partner who holds up their communication aids and helps them keep their body focused through a scaffolding of support methods. Many persons, among them professionals, claim that the outcomes of spelling to commnicate aren’t actually the speller’s own words, but those of their communicaton partner.
At times, very hurtful and dismissive imagery that likens spellers to puppets is conjured (read this post by speller Gregorcy C Tino and this response by DannyWithWord’s communication partner Tara about just how painful this is).

What happens here is that people see a speller move in ways that are foreign to them, see and hear them make noises they cannot decipher, see and hear them grunt and make exclamations, see them make jerky movements, jump, sometimes shove or pull, and they assume that this is a result of impaired cognitive functioning and intellectual disability. They assume that to know why the person’s body and voice is moving this way, they presume to know the person’s mind, that the person simply does not understand what is being said and done around them.

What many people, including any professionals, fail to understand is that neuromotor differences such as neuromotor apraxia means that people can have very elaborate thoughts and ideas, may follow discussions and have lots of invaluable insight to share, but simply cannot get their bodies to align with their wishes (unless they get long-term support that and to my knowledge, we are only beginning to understand what that support ideally looks like).

Less informed people don’t understand that sometimes, apraxic non-speakers make (what seem like) verbal exclamations that they simply did not intend to make. It takes a lot of hard work, patience and respectful, neuro-motor informed support for many apraxic non-speakers to gain access to more reliable information. It’s important not to make blanket assumptions, to stay curious, to keep learning from non-speakers and to reflect that our interpretations may keep being wrong.

2) Speaking for someone else

Something that many non-speakers keep educating about is that no support worker, family member or communication partner is their actual voice, actually speak for them; that while they may not have access to their own voice yet, their own voice  exists, though if it’s not in the form of self-spoken mouthwords.

Some people are concerned because Tiffany is not non-speaking, yet wrote a book from a non-speaking person’s perspective. They seem to worry that A Day With No Words equates Tiffany’s words and voice to Aidan’s actual words and voice.

When non-autistic people, including non-autistic parents of autistic children, write books from the perspectives of autistic people, they often tend to get important things wrong. They tend to focus on their own feelings, priorities and experiences.

While Tiffany is autistic, she isn’t non-speaking and it makes sense to ask questions around this.

The How-and-Why matters. Tiffany is a writer, parent and activist who identifies a lack of representation for young persons like her son Aidan. While tiffany could have written the book from her own perspective of a mother – like much of her social media writing and education does, this would have centered another speaking person in the proximity of a non-speaking one.

Through Tiffany Hammond’s consistent body of work, it’s very apparent that she intentionally practises self-reflection in regards to her children, that she checks her own assumptions and impulses and makes sure she is actually open to get corrected and learn from her sons. It shows that she continues to seek out and learn from (Black) non-speaking autistic persons; that Tiffany is deeply committed to honoring her children’s resistance to her own ideas even while professionals would tell her to ignore it. When she doesn’t see Aidan’s actual support needs met by what insurance covery would provide, she goes back to observing him and identifies that a specific wheelchair with specific features might empower him to explore the outdoors more in ways that suit him better. She regularly acknowledges that she may get things wrong and is prepared to be held accountable.

Tiffany Hammond writes and talks a lot about why she started doing the work she does, why she wrote A Day With No Words. She explains that in the past, she has made stories up that feature characters and storylines that represent and align her kids. Like many other Black persons, she has painted over illustrations in the past to create Black protagonists when they couldn’t be found in books.

For lots of structural reasons, there currently don’t seem to be all that many Black, non-speaking persons who have access to the opportunity to write children’s books that show Black autistic young persons who communicate through a tablet. Tiffany Hammond often explains that she set out to write a book that Aidan can see himself in, and thankfully, she had the resources and skills to create a work of beauty while doing so.

There was a time when Aidan would often flip through the book and through her writing while Tiffany let her readers know that she worked hard to contain her own nervousness and anticipation and leave Aidan his own processing space. Today, she writes that her favorite thing during book readings is seeing and hearing Aidan react to the book while she reads it aloud – to large audiences.

While I can see that persons new to Tiffany’s work and particularly those who haven’t actually read may have initial concerns, I fully believe that A Day With No Words gets so many things right in ways we haven’t seen before and that quite a few non-speakers seem to deeply appreciate, while it fills aching voids that some of us hadn’t even realised existed.

I’m looking forward to a future where there will be lots of books like this, including by (Black) non-speakers. In the meantime, I can only recommend that you get to read the book. I hope you enjoy it as much as I do.

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