by Stephanie Fassov, PRC-Saltillo Ambassador
Who are you?
It’s one of the biggest questions in life. Maybe you’d answer with your favorite hobby, a song you can’t stop listening to, or a memory that shaped you. Identity isn’t just what you feel inside, but rather it’s something you share with others.
But what if sharing your identity wasn’t easy? For people who communicate on AAC (Augmentative and Alternative Communication), expressing who they are can be blocked by a lack of access, limited vocabulary, or people who only see their “needs” instead of their whole selves. These individuals' identities don't disappear, yet they struggle to be seen.
Psychologist Erik Erikson described identity as something that grows through relationships and life stages. For AAC communicators, those relationships — whether at home, at school, with friends, or across time — are where identity either thrives or is stifled. Although I would love to discuss Erikson’s theoretical framework with you all, I do not want to bore you. So, let’s explore this through stories, because that’s where the truth really lives.
Identity Needs Communication
One day at school, I recall that I had something to say during a group project, so I typed it on my communication board, ready to share my idea. By the time I finished typing, my classmates had already moved on. I sat there wondering, Do I even matter here? I felt utterly awful emotionally, as if I were invisible. It not only shattered my confidence, but it also crushed my self-concept.
That moment taught me that communication isn’t just about the words, but it’s also about timing, patience, and being included. When people slow down and wait, identity grows stronger. When they rush past, identity feels invisible.
Consider the AAC communicators you support: do they have the time they need to express their thoughts effectively?
Language Is Power
Words give us the power to define ourselves. I remember the first time I was able to use my AAC to say my faith-based beliefs, as it felt different from asking for food or help. It was about me.
AAC gives access to identity words like “hope,” “dream,” “love,” and “believe.” Without these, people are reduced to needs. With them, they can declare who they are.
If you’re building or modeling AAC, make sure those words are front and center. They’re not extra vocabulary, but they’re essential terms.
More Than Just Needs
Picture this: a student in class can request “bathroom” or “water,” but not “I think math is so boring” or “I love art.” What message does that send? It says: Your body barely matters, but your personality definitely doesn’t.
At home, it’s the same. If an AAC communicator can say “hungry” but not “I want garlic, olive, and jalapeno pizza,” their identity gets flattened.
Support systems: here’s the challenge - ask the fun questions. Program the quirky words. Invite controversial opinions. That’s where identity lives.
Storytelling Brings Us Closer
Here’s a story from my own life:
One day, when my family and I were at church, my mother decided to put her jacket on my manual wheelchair without getting my consent. Well, her jacket knocked my cup over. My coffee spilled everywhere. My mom was already grumpy, and I said, Come on, there’s no more coffee. She walked off but came back a few seconds later because I started yelling. She pushed my wheelchair angrily into the van. I tried to stop her, but I couldn’t. In that moment, my sense of self felt broken. I didn’t feel like a person, but I felt like an object, like a shopping cart being shoved around.
That moment hurt. It made me feel small, like I didn’t even exist as “me.” But here’s the powerful part: telling the story and naming what happened helps me reclaim my voice. As a peer counselor for adolescents who have AAC needs, what I do with them sometimes is help them with reauthoring and reclaiming their unpleasant narratives into empowering ones, using narrative therapy.
When individuals with AAC needs share their stories, they aren’t just recounting events; they are also sharing their personal experiences. They’re saying: This is what happened to me. This is how I felt. This is who I am.
As support systems, you have the power to make space for those stories, or to silence them. Which one will you choose?
Feelings Need Words
Try this with me: name three emotions you’ve felt today. Easy, right?
Now imagine not having those words. How would you explain yourself to a teacher, a parent, or a friend? How would people know what you need emotionally, beyond just physical needs?
AAC systems must include emotional words. Without “angry,” “proud,” “lonely,” or “excited,” AAC communicators can’t fully share their inner worlds. With them, they can connect honestly and build healthier relationships. Personally, I created a 144-location page of emotion vocabulary. For instance, my emotion terms include unhappy, outraged, vulnerable, heartbroken, ticked off, and cherished. The more I use my complex emotion words, the fewer emotional meltdowns, shutdowns, and panic attacks that I have.
As a support system, don’t just model “eat” or “go.” Model “I’m proud of myself.” Model “I feel left out.” That’s where self-awareness begins.
Family as Partners
Identity is built in families. However, sometimes families forget that communication is more than just meeting needs.
I’ve had moments at family holidays, where I tried to share a story or an opinion, but some of my relatives responded while the others completely ignored my words. In these situations, my heart felt empty, in which my identity seemed to shrink into nothing.
But I’ve also had moments where someone leaned in, laughed at my joke, or asked for my opinion—even if it took time. That felt like magic. That felt like being human.
Families, you are the first and most powerful partners in identity. Every time you listen, not just for needs, but for personality, you tell the AAC communicators in your life: You matter. Your voice matters.
Friends and Belonging
Let’s talk about friends. Belonging isn’t just about being in the room, but it’s about being included.
I’ll never forget when a friend waited patiently for me to finish telling a story on my device. Everyone else had moved on, but they leaned in, nodded, and laughed when I finished. That moment said, 'I want to know you.' Not just what you need, but who you are.
For AAC communicators, friends who wait, listen, and include are lifelines. They don’t just support communication, but more importantly, they build identity.
Ask yourself: Do you help create opportunities for AAC communicators to feel a sense of belonging?
Growth and Change
Identity doesn’t freeze in childhood. It continues to grow through each life stage.
I think back to middle school, when my device needed words for “best friend,” “crush,” and “leave me alone.” Later, as an adult, I needed vocabulary for work, advocacy, and independence. The example phrases are “let me know, "I would appreciate it if you would,” and any chance that you can.” My identity expanded, and my AAC had to change with me.
Support systems, don’t assume AAC stops once survival needs are met. As people grow, their voices need to grow too.
Why This Matters
Here’s the truth: identity is built in conversation. For AAC communicators, every word spoken through a device or symbol is an opportunity to say, 'This is me.'
So the next time you’re with an AAC communicator. Don’t just ask, What do you need? Ask, Who are you? Listen for the stories, the quirks, the feelings, and the dreams.
And if you’re part of AAC communicators' support system, whether you are family, teacher, therapist, or friend—remember: you are shaping identity every day. You can shrink it by rushing, ignoring, or limiting. Or you can grow it by listening, waiting, and inviting.
Because, in the end, communication isn’t just a matter of survival. Its identity. And every voice deserves to be heard.
Glossary
AAC (Augmentative and Alternative Communication):
The tools and methods people use to communicate when they can’t rely on speech alone. This can include speech-generating devices, symbol boards, or even simple picture cards.
Identity:
A person’s sense of self, encompassing their values, preferences, memories, and personality, is shaped through experiences and relationships.
Erikson’s Psychosocial Theory:
A theory proposed by psychologist Erik Erikson that explains how people develop their identity and relationships through various life stages, from childhood to adulthood.
Communication Partners:
The people who interact with include family members, friends, teachers, caregivers, and therapists. Their responses can either support or limit identity development.
Emotional Vocabulary:
Words that describe feelings, such as happy, angry, lonely, or proud. These words help people express what’s happening inside and connect better with others.
Storytelling:
The act of sharing personal experiences, memories, or events. Storytelling is a means of expressing identity and fostering deeper, more meaningful relationships.
Support System:
The network of people—family, professionals, friends—who provide encouragement, care, and opportunities to grow and be heard.
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