In 1987, President Ronald Reagan made March “Developmental Disabilities Awareness Month.” In 1987, I was in Middle School. I cannot recall seeing anyone with a disability in the lunch room, at a ball game, or even in the halls of the school. I’m not even sure I knew what a developmental disability (DD) was. Rarely, if ever, do I recall seeing someone with a developmental disability shopping in a store, much less working there. Things have changed so much since 1987. In the pasts several years, Virginia has begun working toward closing all but one institution and has been encouraging businesses to hire people with disabilities; really pushing community integration for all Virginia’s residents. Still, there are misconceptions that people with DD are not able (or don’t want to work), and that they don’t have the same feelings or emotions (happiness, grief, and the desire to be in a relationship). Misconceptions that people with physical or mental challenges are unable to hold a steady job or live on their own, vote, or be independent. As a state, Virginia has been making strides toward their goal of giving all people with DD a life like yours and mine, but there is still more work to be done.
I am able to look at this from a very unique perspective: as both a Developmental Disabilities Support Coordinator here at the HRCSB, and also as a mom to a son with a developmental disability. As a Support Coordinator, I am as involved in the people I support’s life as much or as little as they want. As a mom, I do whatever is needed, whenever it is needed, and will continue to do so for as long as my son needs. In both cases, I get to walk beside some of the strongest people I have ever met. I am able to share the good times and the not so good times. I am there for the successes and for the disappointments. Unfortunately, there are many parents, caregivers, siblings or individuals with disabilities that walk this often confusing path alone.
As a parent, who is fortunate enough to understand the “system,” I encourage other parents to advocate for their child and to practice self-care. Often, however, the overwhelming exhaustion of caring for someone with a disability, worrying about their future, the mounting bills from therapy/medications/adaptive equipment, or just seeing that they are happy and cared for, puts you in a place where you may not have time to eat a healthy meal, let alone practice self-care. Friendships or marriages may suffer, and other siblings without disabilities sometimes become “invisible.” At the end acting as an advocate for others, I go home with some of the same concerns I’ve helped others through during the day. One thing that helps me as I look toward the future is that my son…my family…will have a Support Coordinator to help us when the time comes. Knowing that you have a competent trained professional to walk beside you when you need it truly keeps the future from becoming overwhelming and/or terrifying.
I am quite honestly overjoyed at the direction Virginia is moving. My hope both as a parent and a professional in this field is that someday people won’t stare at my son as he “organizes” the grocery cart. That an employer will say “Let’s figure out how to make this work,” when he applies for a job, and that he is able to have a life like I have. I hope that President Reagan chose to make March Disabilities Awareness month because he wanted to shine a light on the gifts that folks with DD have to give to the world.
DD Support Coordinator