When most people think of intellectual disability (formerly known as mental retardation), they typically think of Down syndrome. However, Down syndrome makes up only a small percentage of people with intellectual disabilities — and with prenatal testing, the number continues to drop. My daughter, Clementine, fits into the “other” category of etiology (causes) of Intellectual Disability and already, at age 2, I find myself hesitant to explain her rare condition to people who notice her differences.
A few months back, I secretly confessed to a closed special-needs parenting group on Facebook that I sometimes wish Clementine had Down syndrome instead of her rare condition, because everyone “gets” Down syndrome.
No one tells parents of children with Down syndrome that their child will grow out of it or that they just need a lot of speech therapy. People know what Down syndrome is and they tend to have a positive response. In fact, just a couple of days ago World Down Syndrome Day was widely celebrated and my Facebook feed was filled with people gushing over adorable photos of kids with Down syndrome.
Like Down syndrome, my daughter has a genetic abnormality: She’s missing part of a chromosome whereas someone with Down syndrome would have an extra chromosome. Both result in intellectual disability and significant delay in development. Both result in speech that can be difficult to understand even in adulthood. And both result in dysmorphic features: For Down syndrome it’s usually low set ears, flat nasal bridge and more (see diagram). In my daughter’s case, dysmorphic features vary widely from person to person resulting in the public picking up that something looks “off” that they can’t put their finger on.
I definitely hit a nerve on the special needs parenting Facebook group; many parents chimed in saying that they, too, have wished that their child had something more widely acknowledged and “celebrated” like Down syndrome. The feeling, whether right or wrong, was that people with Down syndrome can let their deficits and impairments all hang out (i.e. YouTube videos, Special Olympics) and we love it and cheer them on. However, there’s an unspoken hierarchy of special needs that involves increasing levels of stigma. Somehow, we feel as though our child’s disability should be kept private as if it’s guarded medical information. Yet there’s a fine line between keeping a disability private and shamefully hiding it. In general, intellectual disabilities are extremely stigmatized and it results in people not getting the support they need. If someone is visually impaired and they can’t read a map, it’s socially acceptable for them to say “Hey, I’m blind and can’t read this map, can you help me?” or a deaf person might ask for an announcement to be written down, but you’re almost never going to hear someone say “Hey, I have an intellectual disability and I can’t read this map, can you help me?”
I hope that one day this will change and people with all types of disabilities can find the support they need, without any stigma.More On