When Isaac was still quite young, maybe three or four years old, I asked his Occupational Therapist, Amy, if he had “special needs.” The question had been swirling around in my head, and I almost didn’t want to know the answer. It felt like a loaded term. I remembered slights against “special needs” kids when I was growing up in the 1980s, and I didn’t want this label for my child. At the same time, I didn’t know how refer to Isaac’s atypical development or our atypical experience as parents in casual conversation, something I often found myself wanting–or needing–to do. What I really wanted was a sense of identity, a simple point of reference to convey who Isaac was, who we were, and the life we’d been living since our son was born. I was, quite literally, at a loss for words.

Amy answered gently, thoughtfully. “Think of ‘special needs’ as a large umbrella,” she said, “and any child who needs any kind of help or accommodation can fall under that umbrella.” Amy was a sensitive soul who had a sister with special needs and had made it her life’s work to help this population. There was no judgment whatsoever in her response. Only compassion and understanding. But to me, it felt like another loss on top of all the other losses we had already suffered. I took it in, but I didn’t talk about it. Just like I didn’t talk about Isaac’s genetic disorder, for complex reasons I won’t get into here.

It would be several more years before I was comfortable using the label “special needs” for Isaac, but I did eventually adopt that terminology. As he grew older and his differences became more apparent, it felt less like I was branding him and more like I was acknowledging his different way of being in the world. But as soon as I started using “special needs” freely, I ran into a snag. I attended My First Parent Support Group Meeting at Isaac’s school, and one of the other moms made a comment about the problem with “special needs” terminology. I didn’t know what she meant, so I went home and looked it up. And what I learned marked a turning point in my thinking.

I’ve lost track of the articles I read initially, but here are a few takeaways that have stayed with me:

1. The term “special needs” can be stigmatizing, as it originated in a less inclusive age and has been used pejoratively over time. Words carry baggage just like people carry baggage, and it’s important to know that “special needs” is offensive to some.
2. The term “special needs” implies there is something unique or problematic about a person’s needs, when in fact, all humans share the same needs: for nourishment, safety, education, connection, transportation, etc. “Special needs” puts the emphasis on the needs-as-inconvenience rather than on the community’s moral obligation to provide access and appropriate accommodations. This was an eye opener for me. (Interesting enough, the term “special education” is generally acceptable because it doesn’t have the “needs” problem and puts the emphasis where it belongs, on the accommodation.)
3. The term “disability” is an important legal term, ensuring a variety of rights and protections, whereas “special needs” carries no legal significance, and furthermore, is rarely used to refer to adults. Gone are the days when it was considered offensive to refer to someone as being disabled. “Call it what it is” seems to be the more modern thought, and a responsible society should make accommodations for the inclusion and wellbeing of all. This is the preferred term of the disability community, and that carries a lot of weight with me.

For a more in-depth look at terminology, see Why We Say ‘Disability,’ not ‘Special Needs’ in The Mighty, an online community sharing stories, advice, and resources focused on health.

I’m a words person. I believe words matter deeply, as they construct our reality. I also know that language evolves, and we do well to pay attention to changes in our culture and language and make adjustments accordingly.

That said, language evolves over time. There are people in the disability community who still use the phrase “special needs.” Maybe they’ve never considered an alternative, as I hadn’t, or they still find it to be the easiest point of reference for everyday conversation. I use “special needs” in several of my old blog posts and have chosen (for now) not to go back and change them, though I would phrase it differently if I were writing them today. I also use the terms neurodivergent and medically-complex, which work well in written form but don’t roll off the tongue so easily. (The same could be said of Intellectual and Developmental Disabilities, or IDD.) Perhaps another term will emerge in the near future, something that will make it easier to say “I’m a <blank> mom,” rather than “I’m the mother … of a child … with disabilities.” (That’s a lot of prepositions to say a simple thing.) Some linguistic evolution here could be nice.

Initially, it was uncomfortable for me to use the word disability–the D word–for my son. It felt too big, like clothes that didn’t fit. As I kept trying, however, it did become more natural. And what finally sealed it for me was something Isaac said himself just a few months ago when we were picking his sister up from a friend’s house. The conversation went something like this:

Friend’s mom: “Hi Isaac! What are you doing this week?”

Isaac: “I’m going with my school to Morgan’s Wonderland.”

Friend’s mom: “Oh, what’s that?”

Isaac: “It’s a waterpark for kids with disabilities, like me.”

*

And all of a sudden, my heart was in my throat.

Isaac can speak for himself, and disability is the word he used.

Suffice it to say, I’ve come to think of the word disability in a very different way. I had never heard Isaac use disability or any related word to refer to himself before that day. Clearly, this is language he’s learned from his school, The HUB Houston, a thoughtful, intentional culture cultivated by faculty and teachers who, like Amy, have made this community their life’s work. They have been amazing partners in guiding Isaac’s development, and no one speaks “the language of disability” better than they do. I’ve come to think of it as a language of listening, respect, and understanding. It’s a language I am still learning.