61 million adult Americans live with some sort of physical, sensory, or intellectual disability. When parents receive the news-prenatally or postnatally-that their child may have some form of a chromosomal difference or intellectual disability, it’s key that healthcare providers relay this diagnosis in a way that’s respectful to the family and those who live with these disabilities every day.
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“Getting an unexpected diagnosis about your baby can be a really emotionally charged experience,” says Bethany. “There is no right way or wrong way to feel.” What makes the experience supportive or harmful, Bethany explains, is how the diagnosis is conveyed to the parents.
Based on the time or type of information they receive from their healthcare provider, some couples may decide whether or not to continue the pregnancy. This is why it’s important, says Alok, to use wording that’s complete, accurate, consistent, non-judgemental, evidence-based, and respectful when conveying a diagnosis about an intellectual or developmental disability.
Disabilities are generally sorted into physical, sensory, intellectual and developmental categories, and can often overlap depending on the diagnosis. Across the board, these different disabilities can affect mobility or dexterity; sensory information processing; cognitive ability and learning; and day to day functioning.
Each family’s experience with their child’s diagnosis will be different, and what they need for support will differ as well. Bethany suggests seeking out a new doctor or healthcare provider if they aren’t meshing well with your family or providing your child the support they may need. “If you were seeing a hairdresser who kept giving you an unsatisfactory haircut, you would seek out a new hairdresser. The care of your child is infinitely more important than your hairstyle.” So, don’t be afraid to “break up” with your doctor and find one who will better care for your child.
“We’re taking care of individuals, not just treating a medical condition,” Alok adds. Asking a person how they’d like to be referred to in regard to their disability is important, too. Some people prefer person-first language (i.e., “a child with Down syndrome”) while others would prefer the opposite. What’s key is to not use words that conflate morality with a condition, (i.e., “good” or “bad”) when discussing a disability with both neurotypical and neurodivergent children. Children with disabilities have a higher likelihood of being bullied, which is why raising children with respect and teaching the correct language to use is so imperative to creating an inclusive society.
“In many ways, having a family with a child or a person with a disability is different. But in most ways it’s the same,” Bethany says. A child with a disability needs and deserves all the love, support, respect, and opportunity they need to live an awesome life-it’s just a matter of creating a community to uplift them.
PRODUCTION CREDITS:
Hosted by: Alok Patel and Bethany Van Delft
Producer/Director: Ari Daniel
Producer/Camera: Emily Zendt
Production Assistance:
Diego Arenas, Christina Monnen, Arlo Pérez
Senior Digital Editor: Sukee Bennett
Rights Manager: Hannah Gotwals
Business Manager: Elisabeth Frele
Managing Producer: Kristine Allington
Coordinating Producer: Elizabeth Benjes
Director of Public Relations: Jennifer Welsh
Legal and Business Affairs: Susan Rosen and Eric Brass
Director, Business Operations and Finance: Laurie Cahalane
Executive Producers: Julia Cort and Chris Schmidt
Scientific Consultants:
Ann Neumeyer, MD and Brian Skotko, MD, MPP
Archival: Storyblocks
Music: APM
Special Thanks: David Condon
© WGBH Educational Foundation 2021