Why My Family Says “Disabled” Instead of “Special Needs” (by Jeneva Stone)

Rob and his disability rights button collection. [image description: A business card on a brown wood table shows a man with light skin sitting in a wheelchair on a grassy hill overlooking the city of Washington DC. He wears sunglasses and a Washington Nationals baseball hat. Four round advocacy pins are placed near the business card: “Meaningful Work Community Inclusion Transcen.org; Little Lobbyists (with their star child & heart logo), “Disability Rights are Civil Rights”; “Health Care Voter.”]

I still remember my first event with Little Lobbyists, a family-led group advocating for kids with complex medical needs and disabilities. My son Rob wasn’t with me that day--he was enjoying one of his last precious days of public school, which he loved. I’d gone to Capitol Hill on his behalf to check out Little Lobbyists’ advocacy efforts. Rob was transitioning to adult services, and he’d decided he wanted to be a disability and health care advocate (as well as a poet and an artist). Would Little Lobbyists be a good fit for him? 

After visiting Hill offices, I went to a reception for the Disability Integration Act, which had just been introduced in Congress. Walking into the wood-paneled conference room beneath the Capitol, I saw a room full of passionate and excited disabled people, and I thought, “Wow! Here are our people.” 

And that’s my first point: Disability is shared community, history, and culture. Rob experiences the thrill of belonging every time he meets another wheelchair user, a person who communicates by augmentative technology, a person who identifies as Autistic, Deaf, Neurodiverse, and/or chronically ill. Rob is nonspeaking, and I see his joy in his body language: his face lights up, his shoulders straighten, and he sometimes kicks his legs with glee. 

Under the Individuals with Disabilities Education Act (IDEA), Rob had access to the public school system and benefited from an inclusive education; however, as he reached high school, he was less and less included in the regular classroom because alternative “special” education classrooms could still be used by administrators to fulfill the IDEA’s “least restrictive environment” clause. 

This narrowing of possibility in public education as disabled youth reach adulthood speaks volumes about how our society expects “special needs” persons to participate in the real world--society has no expectations that they will live inclusive and self-directed lives. Disability rights is all about changing that.

My second point: When we say people have “special needs” instead of disabilities, we’re emphasizing “needs” instead of “rights.” In fact, disabled people have rights granted to them by law, including the Americans with Disabilities Act (ADA). Using “special needs” gives others the wrong impression about our children. “Special” needs don’t have to be equal, while “rights” carries that expectation. “Special” needs aren’t the same as everyone else’s needs--they’re different, segregated, and subject to being met after the needs of the majority are satisfied. 

Taking a page from Elena Hung about her own daughter Xiomara, Rob’s needs aren’t “special.” His needs are the same as everyone else’s: to breathe, to eat, to socialize, to get around, to be educated, and to choose his own path in life. His life has value and, just like everyone else, disabled or nondisabled, Rob requires varying levels of support, accommodation, and medical intervention to be an equal member of his community. 

Looking back on the 24 years of Rob’s life, I can’t remember not using the word “disabled” to describe him. That’s who he is. Being disabled isn’t “less than” or “incapable.” It isn’t shameful. It’s just another way of being in the world and living your life and expressing your truth.

Rob at a recent state park outing. [A young man with light skin sits in his wheelchair in front of a colorful wall mural with a Maryland State Map, beneath which is written “Nothing is real until it is experienced.” There are also painted images of a turtle, a crab, and a squirrel visible.]

I spent two decades advocating for and with Rob for his rights to be included in his school and in his community--asking family, friends, neighbors, as well as medical and social service workers to be inclusive and prioritize accessibility for Rob. I wanted to model those expectations for Rob so that he’d learn to have them himself. We learned that it is completely possible to have inclusive vacations, activities, and social gatherings. Sometimes we had to do things differently, but we still had fun. For instance, when we visit my family in Vermont, we spend time at museums and accessible tourist attractions, rather than hiking or skiing. 

If you’re still using the term “special needs” to describe your child, let me ask you: Are you holding onto fears and stigma society instills in many of us about people with disabilities? Are you worried that if your child identifies as disabled, they will be excluded? If so, look at Rob. He’s living his best life--he’s loved, supported, and included. And he’s disabled and proud of it. 

Rob uses an augmentative communication device, and one of the things he most likes to say is “I’m fighting for my rights.” People with special needs are those we shelter, protect, and frequently exclude when their needs are deemed too “special” to meet. Disabled people have civil rights protected by the ADA and multiple U.S. Supreme Court cases, including the 1999 Olmstead Decision. Disabled children need to grow up to be disabled adults and advocate for themselves. Be like Rob. Tell your family and friends you’re the parent of a proud, disabled child.

(And, yes! Little Lobbyists has been a great fit for Rob, and could be, too, for you and your family!)

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Jeneva Burroughs Stone is the Blog Manager for Little Lobbyists. She is also a writer.