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All of Us: A First Conversation About Disability
Disability. Disability. Disability!
Why do you think that word is so uncomfortable for many grown- ups to say? Lots of children have a disability, and most people will have a disability at some point in their lives. All of us are negatively impacted by ableism. And all of us have an important role to play in making the world more fair. Together, educators and families can organize to make our communities fun and accessible places for everybody to learn and play. We’ve written this book in the hope that it can help to start or continue these conversations. As always, it’s okay to take a break, leave something out for now, or weave in stories of your own.
DEFINING DISABILITY
Everyone has their own relationship to the word. Among experts and activists, there are different, sometimes conflicting, definitions. That’s because disability is a lived experience, a personal and political identity, a community, and more. In this book we use the word to describe a diverse group of people whose bodies and/or minds (in short, bodyminds) exist outside of what is considered “normal” in our society and are, therefore, targeted by systemic ableism. Following the lead of Sins Invalid—an organized collective of Disabled artists who root their work in disability justice—we “include people with physical impairments, people who belong to a sensory minority, people with emotional disabilities, people with cognitive challenges, and those with chronic/severe illness.” What does disability mean to you?
WHAT IS “NORMAL,” ANYWAY?
It’s important to understand that normalcy is a sociopolitical construct. This construct is connected to eugenics and functions to maintain ableism and intersecting forms of oppression. In the dominant, medical model of disability, illness or impairment is viewed as the central problem, thereby locating that problem within the bodyminds of people with disabilities. So solutions rooted in the medical model tend to focus on curing the disabled person or intervening in ways to help the individual get as close as possible to seeming/being “normal.” In contrast, the social model of disability frames disability as fact: The full spectrum of human diversity is natural and beautiful, and there is no right (or wrong) way to have a bodymind. The social model identifies ableist ideas and practices as the problem, and solutions focus on changing society, rather than changing disabled people. The next time you or your child is injured or sick can be an opportunity to destigmatize disability and notice how ableism is a source of pain and struggle. You can dream together about how your community could be more inclusive and supportive.
LANGUAGE
In our society, euphemisms are widely used in place of the word disability, like “special needs’’ or “differently abled.” Unfortunately, this sends the message that there is something wrong or shameful about having a disability. Some people, including many parents of disabled kids, are strong advocates of person-first language, while others, including many disabled people, prefer identity-first language. “People with cerebral palsy,” or “kids with limb differences,” are examples of person-first language. “Black neuroexpansive people’’ or “the Deaf and Hard of Hearing community’’ are examples of identity-first language. Some terms are outdated and should be avoided, like “handicapped” or “suffers from.” The R-word is a slur, and children should know that it’s not an okay word to use. Correct children when they make mistakes and empower them with appropriate alternatives, like “wheelchair user” instead of “wheelchair-bound.” When unsure, one of the most important things to model is using the words that people want us to use to describe them.
EQUITY
Many of us were taught that fair means “everybody gets the same.” But the truth is that we’re all different, so the same doesn’t work for everyone. Different individuals and groups need different things at different times. That’s why we need to explore the idea of equity. Equity means each person and every group gets what they need. For example, if a new student with a disability uses a screen to communicate, that may not seem fair to nondisabled children. As a supportive adult, it’s your responsibility to help make sure children have accurate information, and to be available to clarify any misunderstandings. In the moment or as a planned conversation, you can ask children questions to prompt their critical thinking, like, “What do you need?” and “What do you notice other people need?”
INTERDEPENDENCE
We all have needs, but in our society, there is a myth of individualism that makes it seem like only disabled people need help, and that all the care, access, resources, and support that nondisabled people get is a given. Healthy communities are interdependent and practice collective care. Children have an important role to play. It’s never too early to begin talking about our needs, asking for help, and offering care.​
ACCESS
Access is for EVERYBODY. In a fully accessible society, every person with a disability will experience the world and have what they need to thrive. That’s the world as it should be, and it’s a better world for all of us. Lack of access means that our society is missing out on the brilliance and contributions of Disabled people. Building this fully accessible world requires transformation. Maybe you’ve noticed that your local playground doesn’t have an accessible swing, or your library doesn’t offer story time in ASL. Accessibility is often an afterthought, or not thought about at all. One way to change that is by talking about it early and often. When you start to generate solutions, remember to center the needs, ideas, preferences, and desires of disabled people.
ABLEISM
Talila A. Lewis, an abolitionist and founding member of the Harriet Tubman Collective, reminds us that ableism is more than hate and bias. It is an unjust system of power that has a profoundly harmful impact on humanity. Ableism is reinforced by the perpetuation of an untrue story that there is a normal or better way for bodyminds to be. Many young children have not yet internalized these biased narratives, but they certainly notice that we are all living in a world that is structured to marginalize and devalue sick and disabled people. Children with disabilities are forced to survive in and conform to our ableist society, while other children benefit from, and learn to take for granted, the status quo. You can support young children’s critical thinking by noticing ableism together. Pay attention to the built environment (such as schools, playgrounds, libraries, subways, and stores), expectations around time, and the emphasis we place on what people can do or make.
DISABILITY JUSTICE
Disability Justice (or DJ) is a pro-disability framework and practice that moves beyond advocating for the rights of people with disabilities. In the words of Patty Berne, a co-founder of Sins Invalid, disability justice is an orientation characterized by a “revolutionary intent.” It is rooted in the conviction that our worth is inherent (not based on our health status, ability, or output) and we all deserve to live in spaces where everyone’s needs are met. DJ practitioners understand that systemic ableism constructs a range of social, economic, and physical barriers that limit access for Deaf and Disabled people. Practicing disability justice with children can look like encouraging them to ask questions about access needs regularly, like whether we need subtitles during movie night, and if the volume is okay for everyone in the group. And it can look like meaningfully involving children in community organizing, such as distributing KN95 masks and scent-free products together via your local mutual aid group.
WHEN CHILDREN HAVE QUESTIONS
Young children notice disabilities, supports, and accommodations, and often have questions. When they do, it’s important not to ignore them or say something like “we don’t talk about that.” Both approaches send the harmful message that there is something wrong with having a disability. If it’s not the right time or place, you can affirm their curiosity, and say “let’s talk about this when we get home.” If you just don’t know the answer, you can say “I’m not sure, let’s find the answer together.” When you do answer their questions, it’s important to use direct, respectful language (see earlier section on language). Some children don’t ask questions, but just because they aren’t bringing it up doesn’t mean they don’t need adult support. You can practice by noticing disabilities in this book and describing what you see.
