By Melanie Dallas, LPC

Each year as we recognize March as Developmental Disabilities Awareness Month, I’ve taken the opportunity to raise awareness of many aspects of intellectual and developmental disabilities (IDDs) and the individuals who live with them.

For example, past articles have explored the services Highland Rivers Behavioral Health provides to individuals with disabilities (including day programs, housing options and care homes, and family support services); our outstanding IDD staff; how Georgia funds services for these individuals through the NOW and COMP Medicaid waivers; and how a 1999 US Supreme Court decision declared that individuals with disabilities cannot be institutionalized simply because they have a disability (in a suit brought by Georgian Lois Curtis).

In these articles, I have also usually included the definition of intellectual and developmental disabilities from the National Institute of Child Health and Human Development (NICHD). That is my focus here – because that definition has changed over the past few years. But those changes are notable, even if they are fairly small, and reveal some important shifts in our understanding of ‘disabilities,’ and more important, what it means to live with a disability.

In my article from 2019, the NICHD definition I included described disabilities as “disorders that are usually present at birth and negatively affect the course of an individual’s physical, intellectual and/or emotional development.”

But if you were to visit the NICHD website today (www.nichd.nih.gov) you would find it describes IDDs as “differences that are usually present at birth and that uniquely affect the trajectory of the individual’s physical, intellectual, and/or emotional development.”

If you read both definitions again, the first change you may notice is that IDDs are now described as “differences” rather than “disorders.” Although some may think of hearing loss or cerebral palsy as disorders, it may be helpful to consider this in a broader context. We are all born with differences – hair and eye color are obvious examples. But in fact, there is a vast range of traits that can emerge from genes combining and copying, from conception through gestation, and some are more profound than others.

The second notable change in NICHD’s definition is particularly important – rather than describing IDDs as “negatively” impacting a person’s life, the improved definition uses the word “uniquely.” Certainly, if you suddenly lost the ability to see, or walk, you would probably consider that as having a negative impact on your life. However, if you were born with vision loss, or with a muscular condition that affected your legs (or with no legs at all), that would simply be how you experience your surroundings, your life. You would go forward like every child does, using what you have to grow and learn and live.

Adaptive technology may help in some circumstances of course, but I am repeatedly astonished at the ways people with disabilities have adapted in order to live independently, and to thrive – especially in a world that was largely designed and built for people who do not have disabilities. Unique is the perfect word – along with creative, innovative and amazing.

Our former perspective that individuals with disabilities have disorders that negatively impact their lives may have prevailed for generations but ultimately reflects a lack of knowledge; we know better now. Clearly, our thinking about disabilities has changed – not only over the past generation but over the past few years, and that is a good thing.

More than mere political correctness, the language we use today acknowledges that individuals with intellectual and developmental disabilities live with conditions that may result in challenges, but that every individual has a unique ability to live as independently as possible. And with the right services and supports – and all of us need some support sometimes – the possibilities are almost limitless.

Melanie Dallas is a licensed professional counselor and CEO of Highland Rivers Behavioral Health, which provides treatment and recovery services for individuals with mental illness, substance use disorders, and intellectual and developmental disabilities in a 13-county region of northwest Georgia that includes Bartow, Cherokee, Cobb, Floyd, Fannin, Gilmer, Gordon, Haralson, Murray, Paulding, Pickens, Polk and Whitfield counties.