When one thinks about the term “developmentally disabled” one thinks of the most common conditions and stigmas surrounding the term. Often, it’s associated with conditions like Autism, Cerebral Palsy, Down Syndrome, and Fetal Alcohol Syndrome, not to mention archaic terms like mental retardation among other things. In this day and age, developmentally disabled lies in the umbrella of cognitive and intellectual disabilities. None of which up until this point I ever associated with beyond being an advocate, teaching assistant, and at one point, my then boyfriend’s caregiver.
But in reality, it turns out I have been living a lie.
Upon discussing my current project of getting a self advocacy group going here in the metro Orlando area with Bill (who has experience in running his own group in my college days,) it came up in discussion that although I want to be an advocate, I don’t self identify as a person with a developmental disability.
“But Mandy, think about it. You were born with a disability, right? And you have trouble doing some things on your own, right? Then you’re developmentally disabled.”
After doing some digging around and conversing with my fellow advocate buddies, he isn’t too far off.
According to the American Association of Intellectual and Developmental Disabilities
Developmental Disabilities” is an umbrella term that includes intellectual disability but also includes other disabilities that are apparent during childhood.
Developmental disabilities are severe chronic disabilities that can be cognitive or physical or both. The disabilities appear before the age of 22 and are likely to be lifelong
Since my disability classifies as a genetic condition that I was born with, and given it limits me in some aspects of life, I apparently fall under the term of developmentally disabled.
But do I really count myself as such?
All my life, the term was synonymous with short buses, segregated classes, and special sporting events where everyone gets a medal or ribbon of some kind. The stigma surrounding the term is damaging to ones like me who never thought it could apply to my own self identity. Which is a shame since society’s ableist views often fogged my own, trying so hard to fit with the status quo in order to make it in the world without that kind of bias surrounding me.
But yet in a way, it makes me wish I saw myself as being developmentally disabled much sooner. There are many opportunities for support and services to those with developmental disabilities, more so than those who classify as legally blind, like I have always been labeled as. Many blind groups and services cater to those who acquire blindness, not so much for those who were born with it.
But it makes me wonder if my own self identity should be something I need to reconsider for my own personal gain. Or is it something I need to leave alone since there are those more deserving of the label society likes to toss around?
Maybe not so much.
In a way, I feel more connected with my fellow advocates with various identities, which makes me feel a sense of community I haven’t really felt before. This gives me the confidence I need to get my advocacy group off of paper and into the real world.
But yet, you can’t fully change 30 years of being called what you’ve always been. Maybe that change will come in time.
Besides Developmentally Disabled Bagged doesn’t sound like a catchy name for a blog anyway.
Whatever you want to call me, at least I know I am not alone.