Working People with Developmental Disabilities – A Novice’s Perspective

By Daniel Crofts

My entry into this field was surprising to some people, as my background is quite different.  Since I finished college, my professional experience has mainly involved, in various forms, writing and teaching.

I’ve been working for Genesee ARC, in the state of New York, for a little over a year now.  I took a bit of a risk getting into this new line of work, and my supervisors took a risk in taking me aboard (for which I am deeply grateful).  All this said, I wanted to take a moment to reflect on what I have learned working with people with developmental disabilities.

First, personhood.  In all my life, I have never worked with a population where each person is so unique, so different even from others in the same population.

Why this is the case I can only guess, but I think it has to do with the fact that most of us are influenced and shaped by our social and cultural environments, and so our uniqueness as human beings can get somewhat obscured.  People with developmental disabilities, on the other hand, don’t always have the opportunity to “blend in” with the wider culture – and the bright side of that is that their individualities tend to shine through more clearly.

Second, intimacy.  My fellow staff members who work with folks with more significant needs know what I’m talking about.

Helping with their most personal and intimate needs may be distasteful at the outset; trying to discover and figure out how to work with people’s unique quirks, interests (often elusive), and abilities may promote a staff member’s stress and uncertainty.  But I have found that when you are relating to other human beings on this level – when you are getting “into the dirt” with them, you might say – you truly do learn a whole new way of relating to people.

And then finally, there is the least happy part of this kind of work – honesty.  Any time you’re working with someone in an instructive capacity, you will find every now and then that you have to be very honest and provide feedback that people don’t always want to hear.

But this – yes, even this – can be a special form of relationship-building.  Parents know it, educators know it, and on an intuitive level I think we know it too.

Think about typical relations between friends and coworkers.  How often do we actually say what’s on our minds?  Not very often since, obviously, there are times when many of us believe this would be unwise.  Yet a lot of us do tend to go to the opposite extreme and talk behind people’s backs, gossip, etc., rather than trying to work honestly and constructively with each other.

When supporting people with intellectual/developmental disabilities, we find ourselves more often speaking prudently and honestly…and some of the people we serve are more than happy to return the favor (a wink to my coworkers).  But the next day, there we are together, learning how to promote and maintain a “people-helping-people” environment (this is Genesee ARC’s vision statement, by the way).

A quick note about staff perspective: When we are working in an understaffed environment with a lot of things going on at once, stopping to appreciate the positive components of our jobs can be very, very difficult.  I’d be remiss if I didn’t say that.

But I hope that we don’t cheat ourselves out of the opportunity this field gives us to become more human.  It must never be said that people with disabilities do not contribute to society.

Indeed, the people I know have taught me very well.

Daniel Crofts is a lifelong resident of Batavia, NY.  Diagnosed with Asperger’s Syndrome at age 16, he has firsthand experience of both the challenges and potential of someone on the autism spectrum.  He graduated with honors from Daemen College in Amherst, NY and obtained a Master’s degree at the State University of New York College at Brockport.  In addition to working with people with disabilities, he also writes for his community’s online newspaper, The Batavian, and for a weekly farm paper called Country Folks. He is also the author of a book, “The Myth of Autism: Autism as a Story of Our Time,” which explores the autism phenomenon from a narrative-historical perspective.