I will never forget the day that our daughter Penny said to me, “It doesn’t only matter what you think.” We were shopping for a dress, and I was being a (slightly?) overbearing mother with (strong) opinions. That day, she bought the dress she wanted, and she reminded me of two things: one, that her opinion matters, a lot. And two, that I can easily lose sight of her significance.

A recent international awareness campaign on behalf of people with disabilities echoes this sentiment. It starts with a young woman with Down syndrome who says (sings), “I want to be where the decisions are made.”

Her parents are picking out clothes for her to wear for a wedding. They have great intentions. They love their daughter. But they have no framework for listening to her. They have no imagination for her as a person with agency over, say, her clothing choices.

The ad goes on to demonstrate all sorts of places where decisions are made without the breadth of human experience in mind—the stairs on a new building that ignore or forget about people using wheelchairs, the shelves that fail to accommodate the height of little people, the touchscreens impossible for blind readers to navigate.

This ad embeds multiple ideas about disability (which is to say, about humanity) within its simple message:

1. Universal design. The idea behind universal design is to create spaces that are accessible to everyone. Curb cuts on city sidewalks offer a great example. Fifty years ago, those cuts were not ubiquitous. Now, we expect them at every crosswalk. They were created to allow people using wheelchairs to navigate cities, but it turned out they also benefit parents wheeling strollers, passengers rolling a suitcase, and kids on a tricycle, to name a few.
2. The social model of disability. This scholarly way of thinking about disability sees disability not as a description of individual bodies and minds with impairments, but instead as a social structure that excludes some people through physical and cognitive barriers. For me, the most helpful starting point in understanding the social model of disability has been eyeglasses. We don’t tend to think of people who wear glasses as disabled. They have a physical impairment, but the social access to and acceptance of wearing glasses has made that disability irrelevant as a category. This ad prompts us to ask how our built spaces and decision-making processes create disability rather than seeing individuals with physical and cognitive differences as impaired.
3. Self-determination. In disability circles, this idea means not that people with disabilities should be able to do everything for themselves, but that they should be able to determine for themselves what they want. It doesn’t take away our need for one another or insist that we should all be independent and autonomous, but rather that individuals have as much of a “say” as possible in their own lives.
4. The dignity of risk. I’ve written about this idea before, but it comes down to parents and other caregivers allowing their disabled kids (and typical kids, for that matter) to take appropriate risks even if they might get hurt. In this case, the daughter with Down syndrome selects her own clothes. Instead of a conservative, young-looking dress, she chooses a black top and purple skirt. I’m guessing that feels like a risk to the parents. (I’ve been there.)

All of these ideas about disability have shaped my understanding of how we want the world to work, with the breadth of human experience in mind and with the voices that represent those experiences at the table.

This ad makes the recent essay I read by ProPublica all the more concerning. The Trump administration has closed 7 of 12 Offices of Civil Rights for the Department of Education.

These are the offices that receive complaints by disabled students when schools refuse to make proper accommodations, and over half of the 12,000 complaints that were under review had been submitted by disabled students and their families. I’m concerned that there are important voices missing from the tables where those decisions are made.

March 21 is World Down Syndrome Day. I’m excited to celebrate Penny and millions of other people with Down syndrome around the globe by imagining and building a world where more and more of us know that we belong and matter.

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Free Resource: Missing Out on Beautiful: Growing Up With a Child With Down Syndrome