Stories of Interest

Beyond Programs: A Parable
By Michael McCarthy

In the beginning, there was placement, and lo we were happy when it happened, as placement was not mandated for adults who happened to experience severe disabilities. And so, we said, this is good.  And placements multiplied and filled the earth.

And then we said, let us make programs, which focus on serving clients.  And clients were defined and labeled, and grouped according to their labels and assigned to programs based on their label. And programs created services for each label, and state agencies developed unit costs for each service.And programs prospered and multiplied, and we said, this is very good.

And as programs multiplied, a cry arose: Let us evaluate these programs to see how good they really are.  And program evaluation, state regulations, quality assurance, compliance plans, and other program measures were created.  And they multiplied and filled volumes.

And in those times, a person arose who was a client, but who was also a prophet, and said: "I don't want to be a client, I want to be a person.

I don't want a label,I want a name.

I don't want services, I want support and help.

I don't want a residential placement, I want a home.

I don't want a day program, I want to do meaningful and productive things.

I don't want to be "programmed" all my life; I want to learn to do things I like, and go places, which I like. I want to have fun, to enjoy life and have friends.  I want the same opportunities as all of you:  I want to be happy."

And there was a long silence.

And lo, everyone realized that they must look beyond their programs. But they were troubled, and they asked:
"How can we do this? Would not each person need their own unique program and system of support and his own individual measure of its quality?"

And the prophet replied: "Even as you say, so should it be done- Just as you do for yourselves."
 

This poem was originally published in HKNC TAC News, Vol. 4, No. 1, Spring/Summer 1989. Mike McCarthy is currently Coordinator for Community Education and Outreach at the University of Missouri-Kansas City Institute for Human Development, a University Center on Excellence on Disability.