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Do words matter?

Do Words Matter. Shown on black background with scattered wooden letters spelling out the word "words"

“Special Needs”  OR “Disability”...  Do words matter?


Facebook can be time-waster but occasionally someone initiates a thoughtful discussion. In one of the groups to which I belong (several groups for parents with kids with Down syndrome), a mom posted a question of whether we should use the term special needs or disability. Other moms commented with their thoughts and resources and it got me thinking why someone might choose an alternative to the word disability.


Perhaps because the word disability has been associated with negativity. The definition of disability is a physical or mental condition that limits a person's movements, senses, or activities. It makes people think that a disabled person can’t do something. So an alternate description to mean the person requires specialized services or assistance was created: special needs. However, it’s more of a euphemism which is meant to downplay something negative. 


Lately, more and more people with disabilities are advocating for the term disability to be used and the term special needs to be eradicated from our vocabulary. Lawrence Carter-Long, Public Affairs Manager of the National Council on Disability created the #SayTheWord campaign to encourage people to say disabled and acknowledge the power of disability culture and identity. In an article for USA Today in June 2021, Lisette Torres-Gerald, board secretary for the National Coalition for Latinxs with Disabilities, states "My needs are not 'special;' they are the same, human needs that everyone else has, and I should be able to fully participate in society just as much as the next person." Several actors with Down syndrome participated in a World Down Syndrome Day video in 2017 explaining that they don’t have special needs; they have human needs like everyone else. I highly recommend taking 5 minutes out of your day to watch this video!


It should be noted that the term disability is the one used in federal and state laws. The ADA stands for the Americans with Disabilities Act and IDEA stands for the Individuals with Disabilities Education Act. Using the word disability provides an individual with protections under the law while special needs does not. Additionally, accommodations should allow those with and those without disabilities to access a venue or participate in an event. 


In an article on the online blog “The Mighty” another good point was mentioned about mocking or bullying. The term special or special needs can be used to mock and bully people with disabilities. Rarely is the term disability used to mock. 


Teddy as a babyWhy do some of us parents not like the word disability? When my son with Down syndrome was born 10 years ago, I was feeling sad, scared, overwhelmed, out of control, isolated, worried…the list goes on. For months I could not say the words Down syndrome without tearing up. To me, the words Down syndrome were extremely negative. I worried that he would not be accepted, included, loved. I worried that he would have the worst schooling, the worst job, the worst life ahead of him.


Once I got him started with the birth-to-three (Early Support for Infants and Toddlers or ESIT) program and I saw him working hard at meeting milestones, I felt more comfortable. When I met other families who had kids with Ds, I felt more confident. When I started volunteering for the Down Syndrome Center of Puget Sound (f/k/a the Down Syndrome Community), I saw what was possible. And when my fourth child was diagnosed prenatally with Down syndrome, I was happy and not the least bit sorry. 


As parents we all have our journeys learning about, accepting and even celebrating our children’s diagnosis. I wonder if that changes our word choices too.

**Courtney Criss is the Leadership and Advocacy Manager at The Arc of Snohomish County.  She is also a wife and mother of four children, two of which have Down syndrome.  She was born and raised in the Seattle area and dreams of an inclusive society for all.  Opinions expressed in this article are her own and are not attributed to The Arc of Snohomish County.

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