The Boy In The Bubble

Throughout my now 35-year (yikes) career at Imagine!, I have heard many words used to describe individuals with intellectual and developmental disabilities (I/DD). Some of those words, fortunately, are no longer considered appropriate, and entire movements are dedicated to eliminating their use, while others remain, still subtly influencing society’s expectations of what people with I/DD are capable of achieving. Words like “unfortunate” and “vulnerable.”

If this were just a case of diminished expectations, I probably wouldn’t be writing about those terms. However, those words that influence diminished expectations have resulted in a regulatory environment that doesn’t support reaching for goals and dreams for people with I/DD. At least in Colorado, services for people with I/DD are designed and regulated in ways that recall “The Boy in the Bubble.” If you aren’t familiar with that term, the Boy in Bubble was a prominent sufferer of severe combined immunodeficiency (SCID), a hereditary disease which dramatically weakens the immune system. The name was a reference to the complex containment system, which resembled a plastic bubble, used as part of the management of his SCID. It also inspired a Paul Simon song.

Our State’s system and the rules and regulations surrounding them makes it very difficult to deliver services with an aim of exploring one’s potential. Instead, they tend to be focused on health and safety. Of course we want people with I/DD to be healthy and safe. But that’s not all they want. That’s not all that any of us wants. 

There needs to be a balance between safety and the dignity of risk taking, but has our State had the leadership and vision necessary to create services that find that balance? Have we instead put people with I/DD in a bubble and then called it a day? In some respects, services in Colorado are only a step away from from institutional settings. 

This is a complex issue, I know. I appreciate that families want to protect their loved ones. And more community access and more independent decision making among the population with I/DD is not entirely risk free. But those things aren’t risk free for any of us. Shouldn’t we allow people with I/DD live their lives to the fullest extent possible, free to make mistakes and learn from them? Or do we just put them in figurative bubbles and “protect” them while failing to provide them real opportunities to engage in their communities. 

Where is the line between those two choices? I don’t claim to know exactly. But those of us on the services side haven’t had much opportunity to weigh in on those choices recently. Neither have the people we serve. Someone is drawing that line, and I don’t really know who, but I’d argue the line drawing activity should be closer to the person, and certainly we should be asking service providers and especially the people in services where they’d like to see the line drawn. 

Maybe it is time to bring back a healthy dose of customization into services. Give the people in services a larger voice in determining how they want to engage in the world. Keep the bubbles for those who want them, and let the rest of our fellow citizens with I/DD have the opportunity to make choices and live their lives in the way they see fit. 

Then again, what do I know?