Discussing Disability: Notes from MAAPS Public Affairs Committee

By Amy Sousa, PhD

CEO, The Guild for Human Services & Director, MAAPS Board of Directors 

Originally submitted to the MAAPS Board November 7, 2022 

Leonardo da Vinci once said, “Simplicity is the ultimate sophistication.”  In a world that is increasingly interconnected and complex, the human brain is masterful at simplifying information into categories that reduce anxiety and confusion. The simplicity of labels, especially binary labels (up/down, in/out, black/white, good/bad, perfect/imperfect), has the advantage of putting us at ease quickly in unfamiliar situations. Unfortunately, the simplicity that comes with labels can bring exclusion and stigma when applied to people and cultures.

Throughout history, there have been myriad labels applied to people with disabilities, such as idiots, fools, defects, deviants, lunatics, and the list goes on. These words reflect generations of cultural fears about human development and stigmatize those who do not comport with dominant (and unattainable) depictions of human perfectionism.  

Disability labels have been changed and made worse over time by institutions designed to “fix,” “cure,” or “rehabilitate” people with disabilities as though the key to human value lay in an arbitrary line between “normal” and “abnormal.” After all, the slur “retard” was taken from the Diagnostic Statistical Manual’s (DSM) definition of “mental retardation,” now deemed “intellectual disability.”    

Today, the MAAPS Public Relations Committee met to discuss the labels used to describe us – the students and faculty of Massachusetts Association of 766 Approved Private Schools.  We met to share experiences, reflect on our own use of terminology, and experiment with new language. In the year 2022, the terms with which people are labeled are different; but fears of human variety remain as palpable as in any other time in history.  And so, we recognize that today’s terms may well be tomorrow’s slurs without continued advocacy, connection, and coalition.  

We discussed the use of the terms “SpED,” “special needs,” “nonverbal,” “high-functioning,” and other monikers that have been used by and for us to describe our deficits and strengths.  We talked about how people with disabilities often have a limited range of labels from which to choose because of the legal, social, and cultural implications of labels and ascriptions. We also discussed how notions of disability identities can be both personal and political constructs, playing vital roles in our marginalization and our empowerment. 

We concluded with an answer that is as simple as it is complex. We are not all the same. Each of us is a person with distinctive ideas about ourselves, our bodies, our abilities, our politics, and our identities. I might have a different response than you. Yet together, we can have a shared identity without negating our personal identities. We can be both singular and collective.  

As a MAAPS’ committee, we agreed that stories start with people, not labels, identifiers, or politics. Ask!  Does she identify as a “person with autism” or an “autistic person?” More importantly, is autism as a label key to her story? Do we even know her story? Starting with the person first is not a function of grammar, it is a function of dignity. It is our privilege to share one another’s stories, not to define them.   

“Everything should be made as simple as possible, but not simpler.”  

– Albert Einstein.