What We Talk About When We Talk About Disability: Part 1

Language and terminology around disability is constantly evolving — and as parents, we're often unsure of what words to use when talking about our children’s disabilities. This becomes particularly important when we sit down to talk to our children about advocating for themselves. Over the next few weeks, we’ll break down some of the issues around disability language to help us all better understand the disability community and how to support our children.

To begin the conversation, we reached out to Caitlin Solone, a doctoral candidate, lecturer, and assistant professor of special education at UCLA. Here, she discusses person-first vs. identity-first language, and what is commonly known as “disability porn.”

Person-first vs. identity-first

Among disability communities in both activism and academia, there is an ongoing conversation regarding “person-first” vs. “identity-first” language. Person-first uses terms like “person with a disability” or “person with autism.” Identity-first language uses terms like “disabled person” or “autistic person.”

As the ADA Network explains, “Some people see their disability as an essential part of who they are and prefer to be identified with their disability first.” For example, as the Autistic Self Advocacy Network writes, “When we say ‘Autistic person,’ we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something.”

Neither of these practices is inherently better than the other. Special X — along with the majority of media organizations — uses person-first terminology. In our case, we have chosen to do this particularly if a child or family’s preference is unknown.

Ultimately, “every child should decide how they want to be identified on their own,” Solone says. “You can talk to your child and say, ‘Some people like to be referred to as this, others like to be referred to as this. There are many options, and no way is right or wrong. Whatever you choose is totally okay.’” Presenting options is often the best way to teach our children to explore their identities, and it’s our job to respect that choice when our child makes it, and again, if or when our child changes their mind.

“At the end of the day,” Solone says, “it’s a personal choice. Most people just want to be referred to by their name.” As parents, what matters is that we acknowledge what our child is most comfortable with, and give them space and opportunities to learn from those who share their disabilities.

On “inspiration porn” and “overcoming” disability

When the brilliant and accomplished Dr. Stephen Hawking, who used a wheelchair and lived with ALS, died in 2018, well-meaning but inherently disrespectful tributes poured in that relied on a problematic trope known as “inspiration porn.” Do you remember seeing an illustration that suggested that, in the afterlife, Dr. Hawking would “finally” be “free” and able to walk again? This implies that a disability is a punishment that people desire to be “freed” from, and it focuses on what Dr. Hawking accomplished “despite" his disability, rather than focusing on what Dr. Hawking accomplished — period. Because this problematic language is often used with good intentions, Solone recommends that we all watch comedian and journalist Stella Young’s Ted Talk — “I’m not your inspiration, thank you very much” — to learn more about avoiding inspiration porn.

“People with disabilities should not be used as objects of your inspiration,” Solone says. If you wouldn’t consider a person’s actions “inspiring” were they not to have a disability, then it’s condescending to “give accolades for things that are commonplace.”

Solone understands why parents may look for examples of “inspiration” without realizing they may be problematic. “My sister has cerebral palsy and an intellectual disability,” she tells us. “When my mom found out, it changed all of the expectations she had planned for her daughter in her head. Whether right or wrong, families can experience a type of ‘grief’ regarding their child’s disability.” The goal, Solone adds, is “supporting parents as they evolve their implicit biases around disability in healthy ways.”

One significant way that we as parents can work on challenging implicit biases is by considering our relationship with the idea of “overcoming” disability. Solone says, “The notion of ‘overcoming’ is problematic because it implies that if parents try really hard and do all the right interventions, and go to the right therapy and doctors, then their child will be better. I think it gives parents hope that their child may somehow, one day, not have a disability anymore. But we’re not trying to make children be someone they’re not. We’re not trying to take away their disability if it’s innately part of who they are.”

So, rather than talking about what our children will “overcome,” focus on what they excel at, and how we can support them in living their best life. That often includes going to the best doctors and therapists, but it doesn’t include “overcoming” a disability that isn’t diminishing their value in the first place.

In conclusion, while disability language is complex and ever-evolving, what’s important is that we stay open to the experiences of adults with disabilities, disability activists and educators, and others in the community who can guide us in seeing and talking with our children about the disabilities that make them who they are so we can help them see themselves as they want to be seen. We look forward to continuing this conversation with all of you.

Other news