Neurodiversity is for all of us.

Everyone in my immediate family has a disability. All of us are impacted differently. Some of us speak. Some do not. Some of us have hyper focus. Some have distracted focus. Some have high energy. Some have low. Some are readers and in love with collecting knowledge. Some struggle with reading and showcasing knowledge. Some are emergent communicators who are working on letter sounds and exploration.

The neurodiversity movement includes all of us.

I’ve been seeing this problematic trend, popping up in tweets and The Guardian, that writes about neurodiversity as a movement for speaking or employed autistics only. It says that neurodiversity doesn’t include those with learning disabilities or intellectual disabilities. It says that people who are married and employed cannot be impacted by their disability or understand anything about the life of someone who is neither.

None of this makes sense to me. It is a gross misunderstanding of the concept, and feels somewhat like deliberate misleading.

First, yes, the self-advocacy movement includes those who are non-speaking or who have intellectual disabilities. It is hands down my FAVORITE movement. It is one that says — yes, yes, your daughter too has rights. Yes, her communication is valuable, whether it is in sounds or gestures or hand-flapping or on her AAC device. She doesn’t have to prove herself. She doesn’t have to become literate or a math genius or dress herself. It says that she is worthy of belonging to her community, her school, her world — as she is.

And the places advocating for her inclusion? For assistive technology? For accessible physical environments? For a living wage that will ensure she has access to high-quality personal care attendants? For access to healthcare and real literacy instruction and a life that SHE designs? It’s the neurodiversity movement. It’s not the “autism mama” movement, which pushes for private day school and segregated ABA-centered settings. It’s not the ABA movement, whose assessments label her as a “pre-learner” and excludes her from even being with peers in a special education classroom. It’s the neurodiversity movement. It’s her teachers and aides who, knowingly or not, have adopted the mindset that she is who she is and their job is to help her access HER best life.

Second, there is this misconception that neurodiversity does not acknowledge disability. To me, this image is more a reflection of our cultural understanding of disability (and our culture’s unwillingness to accommodate). Over and over again, you will meet self-advocates who speak both to their strengths and their challenges, who say “I have a disability AND I am proudly autistic.”

Yes, disability can be hard, even before adding the layers of cultural ignorance on top of it. Yes, experiencing psychosis and major depression and devastating anxiety can be awful and isolating and miserable. But nowhere is there anything in the neurodiversity movement that says “you’re not included” or “this never happens”. Instead, they beg for research to be spent here, on the things that make a real difference in quality of life. They ask for researchers to look at what accommodations and medications and treatments can give people access to the life they need — rather than spending more time and money on curing autism or ABA or vaccines, again. Autistic researchers are leading the way as they research how current “treatments” often create and perpetuate PTSD. Never is the neurodiversity movement against improving quality of life. It’s about improving quality of life without having to stop being who you are. It’s about the world changing to accommodate difference, instead of individuals being expected to hide, change, or smooth over their differences.

Lastly, we cannot judge someone’s experience of their disability by what we see on the outside. I’ve seen this hurt so many children and adults, who don’t get accommodations they need or have to work so, SO hard because the world thinks “you look fine”. I have also seen many children lose access to things they need or love (soccer teams, theater arts, a general ed academic class) when someone realized that, oh, wait, they aren’t as “high functioning” as we thought.

I work. I have a strong marriage. I have two beautiful children. I also have a lot of accommodations from my family that allow be to do those things happily. Before I had those things? I was nearly suicidal from the effort of it all.

Here’s just a small sample of how my life is impacted:

  1. I take medicine for my anxiety.
  2. I have clean clothes and clean dishes because of my husband.
  3. My husband has to remind me to take a shower. I would go weeks and weeks. Like, when people say “how do you count the pool as a shower?” I’m like “It doesn’t?” Because it just doesn’t click in my brain. (Good thing for husbands.)
  4. My husband packs my headphones and my fidgets and anything else I need to accommodate myself when traveling.
  5. My husband makes dinner. Because it it was up to me, we would either eat the exact same food for weeks or order take-out online all the time.
  6. He also explains things to me, like if a friend, colleague, or supervisor said something and I didn’t understand their meaning or intention — I save it to ask him about later.
  7. One hour of socializing in a group of 2-3? That means a 1-3 hour nap to recover.
  8. My children get screen time right after school so that I can have a solid hour to recoup my spoons from the day.
  9. I regularly use text message to communicate with my husband because talking would be just too much and feels / is impossible.
  10. I often walk out of stores without buying anything I am supposed to (or buying a whole bunch of stuff I just threw in the cart) because I just can’t deal with them.
  11. I refused to drive for a long time because of said anxiety and could only go places if someone else could take me. Basically, I went nowhere.
  12. I absolutely have grown-up meltdowns, including stomping my feet and hitting my legs and screeching and storming off to my room.
  13. I have annoyed my friends and family to no end watching the same show, singing the same song, bursting into song at random, making noises, rocking, and so on. (My current favorite is a Fresh Off the Boat line: “I asked for the Randy and he gave me the Brad.” I can say this repeatedly to myself and laugh for 10+ minutes.)
  14. I have gone home crying and torn apart from work on days where there was just too much talking. Too. Much. Too MUCH.

These may not seem that dehabilitating, I guess, but the point is more this — no one would know. No one at my work would know. That’s not including the one million accommodations I’ve slowly built up for myself over the years. The endless mental checklists, the dozen alarms on my phone, the to do lists I print to keep myself organized and on tasks.

And my husband would probably have his own confessions list of things that are hard for him, things I help make happen. We are a symbiotic relationship. We are a one in a million match, making each other better because of it.

As an aside: What’s even sadder to me is that I feel so intensely vulnerable sharing this list because there are people in this world who would hold these against me. I am a FANTASTIC teacher, deeply, and an AMAZING mom. People are blown away by the way my kids have grown and matured over the years. They are so loved and cherished and encouraged. Yet there are people who would read that I have some meltdowns and bad personal hygiene and think that I am not a good parent.

All of that to remember — what’s on the outside doesn’t always reflect what’s on the inside. And we shouldn’t have to disclose what’s on the inside to get accommodations and access and respect. I also can guarantee that, while my daughter’s experiences are different than mine (she is her own person, after all), I can empathize with her in a way that someone neurotypical cannot, someone who has never had a meltdown about sounds or number of foods or what time her show is supposed to be on. Does this mean that someone who is neurotypical cannot be a good ally? Of course not. It just means that, yes, wherever someone else arbitrarily places you “on the spectrum” — you have value and worth and important things to add to the conversation.

Because that’s what is so beautiful about the neurodiversity movement — it is, by its very nature, inclusive. It is for all of us. It is about all of us being able to be ourselves, fully. I don’t know how anyone can be against that.

My Teaching Goal (Spoiler: It’s not Fixing!)

a set of neon shapes in a neat line on a couch cushionEarlier today, I was looking through one of the many assessment tools that are available to me, and trying to decide what’s useful, what’s not, and how it will feed into instruction. One of the warnings on this tool, and many others, is that using different materials or question phrasing invalidates the standardization process.

Except, outside of eligibility where I begrudgingly complete standardized assessments, I don’t care.

A training I recently attended said that children who can do something with family but not under a standardized test condition may have the knowledge, but should still target the skill due to the “performance problem”.

Except, to me, it’s only a “performance problem” if the student in front of me sees it as such, if they believe their difficulty accessing this knowledge is interfering with their goals and quality of life. Even then, I look at accommodations before re-teaching. Otherwise — if it is just a matter of “I can’t show my skills in these test conditions”, it’s okay. If you can name a bunch of farm animals when playing with toys or singing with mom, but not during a standardized test? That’s fine. I’m going to write that you know your (farm animals, letters, addition, etc).

Because here’s the thing — I don’t see my job as fixing children. I think my students are harmed if the primary focus of education is to bring their curve or scores closer to a normative one. It’s also simply not possible for many students, at least not without the terrible toll that comes with masking.

This doesn’t mean presuming incompetence.

This doesn’t mean babysitting.

This doesn’t mean not doing anything.

We hold high expectations and believe in the capability, value, and leadership potential in every single student that enters our classroom. We teach to those high expectations. We look for alternate ways to capture that learning.

I see my job not as fixing, but as supporting. I am here to support each student to finding and sharing their voice. I am here to support engagement through accommodations and universal design. I am here to support learning by ensuring access to the fullness of a curriculum, including real reading and writing and making sense of numbers. I am here to create a world of opportunity for every student to have the best possible life, to create, to think critically, to experiment and explore and uncover.

And students don’t have to become “normal” or “typical” to do that. In fact, our world is made richer when we see and encourage all the ways there are to create and synthesize knowledge.

So, no, I don’t care if my assessment tool is standardized or if I totally skip any and all goals around eye contact (*intense side eye* — why does that even still exist???). Because I don’t need to fix my students. They are already worthy and valuable and wonderful — just as they are

Teaching Values

As we enter a new school year, I find that it’s the perfect time to get clear on our teaching values. Teaching is inherently a political act, and I don’t mean this party versus that party. Each day we enter the classroom, we act on our values. And our values either uphold or break down systems of oppression.

There is no neutral.

To quote Elie Wiesel, “Neutrality helps the oppresser, never the victim.” Neutrality doesn’t exist. Neutrality means the current systems continue as they are. Neutrality means that the current power structures stay as they are. Neutrality means we don’t unwind all the bias that we have imbibed from our larger culture, whether intentional or not.

And so we need to get clear on who we are, what we value, and what we will implement in service of those values. We need to be clear on who we are there to serve: our students. Do we want to serve our students on autopilot? Do we want to serve them up the same systems that lead to the current outcomes, which aren’t very good for students with disabilities? Or do we want to serve them something more?

I want something more. So much more. The following five beliefs form the core of who I am as a teacher. There’s so much more that I can say. If you’re on Facebook, you’ve seen our classroom poster. I had to force myself to stop adding to it. But it all comes back to this.

Kids do well when they can. If things are not going well, then it is our job, as the adults in the room, to adapt so that things can go well. It is not the student’s job to adapt to me, to my environment, or to my needs. It is my job to adapt my teaching, to adapt my environment, to adapt my needs. It is my job to be flexible. This is why you’ll see me change the schedule, move a couch, adapt my data sheets, and a million other things throughout the year. It’s not because I love change. I hate change as much as the next person, and maybe more. But I know that it is my job to change for my students. It is my job to change so that our instructional assistants can be successful. That is the responsibility that I accepted when I entered the classroom. I take it very seriously. It also tends to be both the primary reason that my students succeed and the primary reason that outsiders dislike my room (see: “what? Why don’t they have shoes on? What is wrong with this teacher? THEY NEED TO LEARN!”, and also: my response).

Every student has value. Every single one, and that’s as they are right now. Not “when they talk” or “when they learn to read” or “when they hold a job”. They have gifts to offer right now.  I am ten thousand times over confident that the world would be worse off without the students I serve. My world would be worse off without the students I serve. I see part of my role as teaching this to my students, my families, my school community.

Everyone has something to say. All of my students have creative and funny and interesting things to say. Sometimes with words, sometimes with their bodies, sometimes through their art or curiosity. I want to amplify their voices so that everyone can hear them. I want to give them the tools they need to amplify their own voices, whether that’s access to an AAC system, increased vocabulary on that system, vocabulary instruction, or just telling people to stop and listen. Every student leaves my class knowing that their voice mattered to me.

Students have autonomy over their voices and bodies. Yes, that even means that students can tell me no. Yes, that means they can tell me to STOP and that they are MAD and even that they HATE me. A dear friend of mine has heard “we don’t say no to teachers” enough in classrooms that she has a whole blog post on how problematic it is. And it is so problematic. Our students, probably more than any other students, need to be taught that they have the right to say no. It’s abuse prevention. It’s voice amplifying. It is a fundamental human right.

Every student has the right to access rigorous curriculum. I wish that this didn’t need to be said. Yet I have spent most of the last six months defending that, yes, autistic students can learn to use core words. Yes, nonverbal students can learn to decode and comprehend what they are reading. Yes, students with language disabilities can engage in creative writing and the acts of putting written word to paper. No, a fourth grade should not be re-reading Pete the Cat as the core of their literacy work for the fifth year in a row. Whether they are served in the general education classroom, a self-contained classroom, a hospital, at home… They have the right to a robust education that teaches oral and written communication, critical thinking, problem solving, and so much more. An IEP does not mean “less”. It means more.

 

As I write on the eve of my fifteenth year serving other individuals with disabilities, this is what guides me. This is what I keep in mind when I write assistive technology evaluations, when I select IEP goals, and when I speak to parents about all the joy and beauty and honor that has come with teaching their child during the year. Because it is — it’s an honor. And one that I work hard to live up to.

 

 

Review: Hello, Universe

dark cover with a picture of a boy in pit/hole while 3 friends and a dog walk on the earth above.Genre: middle grades contemporary

Release date: March 14, 2017

Synopsis: Hello, Universe is told from the perspectives of four weens: Virgil, Chet, Kaori, and Valencia. Virgil is incredibly shy, possibly socially anxious, and lonely. Between school and home, he feels completely out of place. He’s also subject to intense bullying by Chet, which includes repeated use of the r-word. One day, Virgil goes missing. His friend Kaori (a self-proclaimed psychic) and her new client Valencia go on an adventure to find and rescue their friend.

Disabilities represented: learning disabilities, anxiety, deafness

Warning: The bullying in this book can get very emotionally intense and may be difficult to read, especially if you’ve been the recipient of bullying or feeling outcast due to your disabilities. I had to take repeated breaks during the novel.

Review: This book is an emotional roller coaster, with a lot to digest — but it’s also the kind of book that stays with you long after finishing. Kelly captures the intense feelings of what it means to be alone, of what it feels like to be bullied, of what it feels like to be perennially on the outside, looking in. But she also captures the warmth of her characters (Kaori, especially) and the hope that can come in building even one, true friendship.

One piece that Kelly captures incredibly well is the struggle of having a disability in a family and culture that pushes for “normal”. Valencia is hearing impaired, but has never been taught sign language. She is expected to read lips, which is hard enough — and even harder in a world where people do not accommodate. Little things, like facing the person you’re speaking to, can make the difference, yet so many people do not think to do them (or, worse, actively don’t care). Accommodations are important, both official ones and informal ones that we can do for each other. But it also opens up a discussion about American Sign Language — and why the dominant culture and hearing parents still see ASL as “less than”, as something to be avoided and ignored if any hearing can be captured at all. ASL is language. A valid, important, beautiful language. And more — ASL doesn’t just provide a way to communicate, but it also can be an integral part of connecting to Deaf culture. All of which raises questions about identity-first language, pride, neurodiversity and acceptance — important conversations to be having with our children.

I do recommend reading it with children or students, but I recommend doing so as a read-aloud or buddy read. There’s a lot to unpack, and I think most students would benefit from unpacking it with someone. For example, the use of the r-word in this novel should be unpacked together to discuss why that word is so offensive and painful to disabled communities (on top of the bullying way that it is used). It would also provide a great text for talking about what it means to be a friend and to welcome all into our communities, whether our classrooms or our neighborhoods. Overall, this book really captured my heart — wrung it out — and lingered with me for days… Five stars, and I understand why it won awards.

 

Review: Roll With It

bright blue cover with white text "Roll With It"; a girl in a wheelchair pops a wheelie while spinning a pie on her finger.Genre: Middle Grades Contemporary

Release date: October 1, 2019

Synopsis: Ellie is a young girl with cerebral palsy who uses a wheelchair to navigate through life. She and her mom move to her grandparents’ small town to help her grandmother care for her grandfather, who has dementia. Ellie also has to navigate new school, new town, and new friends while on the quest to bake the most perfect pie.

Disabilities represented: Ellie has cerebral palsy, and one of her friends is autistic. Her grandfather has dementia.

Warning: some bullying of Bert by classmates, but no graphic descriptions

Disclosure: I received the paperback of Roll With It as a free ARC when I attended BookCon 2019. I also received digital access to the ARC in exchange for my review, which was also shared on both NetGalley and Edelweiss.

Review:

I had a lot of conflicted feelings when reading Roll With It, which is why it’s taken me a week to post this review. I’ll start with what I love: Ellie is a whole person. It seems like something that shouldn’t need to be said, but it does. Too many books featuring characters with disabilities use those characters as props to make friends & family feel good. Ellie is not one of those characters. She is her own person. She has her own dreams and desires. She makes mistakes. She and her friends get in fights. She is a tween girl, living in a complicated situation.

On the flip side, Ellie has a lot of moments where she basically thinks or says “my disability sucks” or when she daydreams of not needing a wheelchair. Those feelings are real. I get that. I remember being a teenager who was different. I didn’t use a wheelchair, but I had my own invisible disabilities that were hard enough. I spent a lot of time trying to fit in. I know this part of the story is very, very real. But I worry that often THIS part of the story is the only part that is portrayed in our media. I worry about where that leaves kids reading about cerebral palsy, possibly for the first time, and how it can lead to pity and ableism.

However, I find that Ellie’s baking and her friendships come together with this piece of the story to balance the narrative. There is “this sucks”, but there is also “I’m Ellie, I have CP, and I am going to live my best life.” There are plenty of moments that make clear that a HUGE part of “this sucks” is other people sucking. Other people not providing accommodations. Other people making assumptions. Other people being jerks. And that’s important, because people need to know that they can do better to build a world inclusive of all. All those feelings of internal conflict, that processing — that’s the most real part of the story for me.

At times, the pieces of the story can feel disjointed, yet all of them are important. They all contribute to that feeling of fullness — to the knowledge that Ellie is… well, Ellie. She is a girl who is struggling with a grandparent who may not be safe at home. She is a girl who is struggling to find her autonomy from her mom, as many tweens and teens do. She is a girl who loves to bake. She is herself, and that’s what makes this book work for me.

One last thought — I understand that people make judgments about people with disabilities based off what they see. They shouldn’t do that. I do think that authors, in general, can do a better job of making this point without the, “But I don’t have an intellectual disability!” line. This pops up in several books about physical disabilities, and really deserves its own post. Because I worry that we accidentally dehumanize people with intellectual disabilities, that we accidentally are saying “but if I did have an intellectual disability”… The reality is that we shouldn’t speak like that or think like that about anyone. Regardless.

Overall: I would recommend for a read-aloud in an elementary school class or for adding to your school library. I think there are really powerful elements that are worth discussing, especially in the friendships that are formed (and the way classmates treat both Ellie & Bert, who is autistic).

Review: It’s My Life

side view of a young girl with dark hair and a pink baseball cap with "It's My Life" in white text on over it.Genre: young adult contemporary

Release date: January 1, 2020

Synopsis: It’s My Life follows Jenna, as she struggles with growing up, figuring out who she is, and how her disability plays into that. She navigates family, friendship, and finding her voice, both at school and as the director of her own care. The author writes that this book is primarily not about her disability, but about a girl who “believes something about herself that is not true”. However, Jenna’s negative feelings around her disability drive the bulk of the plot points and are central to the story.

Disabilities represented: cerebral palsy, depression

Disclosure: I received digital access to the ARC in exchange for my review, which was shared on Edelweiss.

Review contains spoilers.

I found It’s My Life choppy and disorganized. First person perspective can be challenging for authors. In this case Jenna’s thoughts come through as pressured, fast-paced, and highly disorganized. The plot contained significant jump points with weak transitions. I often found myself wondering, “How did we get here?” or “Would this really happen?” I mean, would someone’s uncle really randomly help them complete lal the paperwork for medical emancipation out of nowhere? The text message conversations between Jenna and her crush are especially choppy, as was the whole “cat-fishing” scheme. Jenna spends so much of the novel as her alter-ego that I honestly forgot her name several times.

I wanted to love this book. I did. I think there is a real dearth of coming of age novels for teens with disabilities. They face the same struggles as any teen, but with the added stress of a society that doesn’t often accommodate them. I think that following Jenna’s struggle for medical autonomy, the constant decision-making, the risk/benefit analysis of “is this treatment worth it? are these side effects worth it? for what purpose?” would have yielded a whole depth of emotions and plot to explore. I would have loved for that to be at the forefront. Instead, I struggled to understand whether this book was about Jenna’s understanding of her disability (which was very, very negative), about her struggle to have a “normal” life, about her depression, about her friendships… I just don’t even know.

I will say that I very much thing that Ramey wanted to portray to the world that Jenna is capable and brilliant and perfect, as she is. I do not think that Ramey herself has a negative view of cerebral palsy. She especially portrayed Jenna’s family beautifully. There’s a moment between Jenna and Jenna’s dad, towards the end of the book. Jenna asks if he ever had to grieve the diagnosis of cerebral palsy. He talks about how, from the beginning, he saw what a fighter she was and how beautiful and perfect she was, as herself, completely. It was a heart cracking moment — and an unconditional love that I wish more people had the privilege to experience.

So, no, I don’t think that Ramey is intentionally ableist. I don’t think she believes the world would be better without Jenna, or that Jenna would be better without her disability. The ableism in this novel is the subtle stuff, the “I don’t like the word disability” stuff. Late in the novel, when Jenna meets another person with a disability, the other person says she runs a club at her college for students with disabilities. The other person, though, talks about how she prefers the term “differently abled” or something (and I rolled my eyes). Similarly, of course the happy ending for this novel is that Jenna gets a baclofen pump, the baclofen pump works beautifully, and Jenna’s whole life is changed! She is less physically impacted! Hurray! (Sense the sarcasm.)

I do think this is a risk when well-meaning professionals write from the perspective of a disability. We have to really spend a lot of time analyzing what we are writing to see if we are unintentionally reflecting the ableist culture we live in, or if we are using our writing to subvert that oppression. I think that It’s My Life could have done with a lot more subversion.

Review: Red

white cover with a crayon coloring blue all over it, but the crayon is labeled as red.Genre: Picture Books

Release date: February 3, 2015

Synopsis: The blue crayon is mistakenly labeled as red, and suffers an identity crisis from trying — harder and harder — to be what he is “supposed to be”. Eventually, Red discovers the best way to be true to themselves is to let go of the rules… and be blue!

Disabilities represented: This book has been used to celebrate neurodiversity, gender non-conformity, and pride. It could be used to talk about disability and difference in other ways too, always coming back to the essential message: be you.

Review: This is a favorite in our household. My 12 year old still picks this up to read, as evidenced by our missing book jacket and torn corners. The beautiful and bold illustrations bring the “be you” message to life, as children literally see in front of them that there is no other way to be. But this story doesn’t just benefit children. It reminds all of the adults in our lives that happiness & joy come from allowing the people in our loves to just be. We don’t have to force neurotypical movements onto their bodies. We don’t have to force gender-normed clothing or activities. We don’t have to assume “can’t” and defiance and incapable.

There’s this scene where the teacher crayon tells the student crayon to draw strawberries. All of crayon’s strawberries are blue, because, he’s… blue. I think about all the times that children are asked to do something, especially our neurodiversity children. To identify a letter. To find a group of numbers. To draw a specific picture. I think about the assumptions professionals in their lives make: they can’t, they don’t know, they’re not listening, “they’re not ready”, “they need prerequisite skills”.

Or… maybe… just maybe… they’re blue.

Truly: a classic that I wish every child had in their class, school, and home libraries. Highly recommend.