Providing lived experience testimony

Tell your family’s story to decision-makers to illustrate the human impact of harmful policies.

Data alone doesn’t move systems. Policies can be justified. Budgets can be balanced. Minutes can be written. But none of that captures what it feels like to watch your child shut down under fluorescent lights, or panic when a fire alarm drills through their regulation, or be left out of a class activity because the school didn’t think to check whether the space was accessible.

Providing lived experience testimony is how we make those realities legible to people who never had to fight for inclusion. It’s how we make harm visible—not just as an idea, but as a cost that is paid in children’s distress, family exhaustion, and missed opportunity.

This strategy isn’t about oversharing. It’s about choosing to speak, clearly and intentionally, when the system wants to pretend no one is being harmed.

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How to use this strategy

Start by choosing the format and setting that feels right. Lived experience testimony can be shared:

• In writing (e.g. letters to trustees, district consultations, public reports)
• In person (e.g. delegations to the school board or Ministry forums)
• In video, audio, or illustrated form
• Anonymously or under your name, depending on what feels safest

Then focus on the gap between policy and experience:

• What does your child need to regulate or participate?
• What environmental or technological changes have (or haven’t) been made?
• What was promised—and what was actually delivered?
• How has your child been affected?
• What has your family had to do to fill the gap?

You don’t need to sound legal. You need to sound real.

“My child was told they could have noise-cancelling headphones, but they were never ordered. Every day, they come home shut down and sobbing. Every day, they ask why school feels like a punishment.”

This is what policy looks like in practice. You are showing the human cost of delay, denial, and half-measures.

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Gather input from others, too

Lived experience testimony doesn’t have to come only from parents. You can also:

• Ask your child how certain changes have affected them
• Invite educators or support staff to share what they’ve noticed
• Collect anonymous statements from others with similar concerns

The more voices you bring, the harder it becomes to dismiss your experience as “an isolated case.”

You might write:

“Below is a short statement from my child, who has asked to explain in their own words what it feels like to be in their current classroom environment.”

Or:

“These observations were shared by multiple educators who work with my child and have seen how certain accommodations directly affect regulation and participation.”

This kind of testimony builds a record of impact—not just need.

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What to watch out for

Systems love metrics. But metrics don’t cry. They don’t panic. They don’t hold their ears or leave the room or forget how to speak. When you bring lived experience into decision-making spaces, you may be met with discomfort, deflection, or even dismissal.

You may be told, “That’s not how we see it,” or “That’s not typical.”

That’s when your voice matters most. Not because it will change everything overnight—but because it interrupts the performance of equity with the truth of inequity.

It is okay if your voice shakes.

A parent

It’s okay if you cry. What matters is that someone in the room remembers that this isn’t abstract. This is a child. This is your child. And this is real.

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You are allowed to tell the truth

You are allowed to say:

“This is what it feels like when support is delayed.”
“This is what my child lives through when the environment isn’t adapted.”
“This is what we carry, every day, while you measure compliance.”

You are allowed to name what it costs.
You are allowed to tell your story with emotion, clarity, or grief.
You are allowed to bear witness—and to ask others to witness, too.

Because no one can fix what they refuse to see. And you are making it seen.