Today was the 15-year anniversary of my being hired for my
first job in my chosen field.
I spent it packing up my office.
I haven’t lost my job. But I’ve lost the part of my job that
I loved most.
For those who aren’t familiar with my job and my field – I’m
a Behavior Specialist, working with people who have developmental disabilities.
My role is to figure out what need a person’s behavior meets – attention, control,
stimulation, escape from physical or emotional pain, etc. – and make a plan to
help them meet it without doing dangerous or inappropriate things. It’s a
wonderful, interesting, fun job, and despite its challenges and the modest size of the paycheck I can’t imagine doing anything else.
Before I was a Behavior Specialist, I worked in a Community
Inclusion program. It was for adults with severe cognitive and physical
disabilities, and the emphasis was on helping them to achieve their own goals.
If they wanted a job, we’d help them find one. If there wasn’t one, we’d create
one. If they didn’t have the ability and desire to do any kind of job, we’d
find out what they COULD do and what they DID want, and go out and do the hell
out of that. We had people learning to read, learning to communicate more
effectively, learning to order their own food, learning to make paper, learning
to paint and draw, learning to play music, learning to hold and count their own
money, learning to feed themselves, learning to take care of plants, learning
to talk to people they met in the community, learning to cook… going to parks
and zoos and fairs and stores and bowling alleys and swimming pools and
restaurants and concerts and bars… and just trying all kinds of new things to
find out what they could do and what they liked doing.
And it was GOOD. It had joy. It had fun. It had a sense of
hope that people could be doing better a year from now than they are today. It
met people where they were at and helped them get closer to where they wanted
to go. It had people smiling and laughing and socializing and learning, who
used to do nothing but scream and hit. It had people who were not able to work,
still able to do SOMETHING worthwhile. It was a beautiful thing in the lives of
the people we served there, and in my life.
And when I got promoted to Behavior Specialist, I stayed
involved in that program to the extent that I could. Eventually my office was
there, and that worked great because it meant I’d see most of the people on my
caseload every day, and I still got to help them participate in the part of
their day they loved most.
And I poured the best of myself, my best work, all the
creativity and effort and passion and humor and love I have, into that program.
That program has been shut down.
It closed not because it was failing to accomplish what it
was made to accomplish, but because political and legal decisions are made by
politicians and judges – by people who have no actual experience with the
things they’re making decisions about.
There was a series of funding changes over several years
that gradually made it impossible to do the job with the amount of money the
state would pay for the work. Each change, to an outsider, would make logical
sense; but to someone actually doing the job, it was an obvious mistake. And each time the government cut the funding, they never
considered that the needs of the people we serve hadn’t decreased just because
the funding had. They still needed physical assistance to eat and drink, use
the bathroom, get in and out of chairs, and communicate… let alone the help
they needed in order to learn new physical skills, experience new places and
activities, learn and practice the rudiments of social interaction that would
help them be more safe and appropriate in community settings, follow the
routines that they depended upon in order to feel happy and safe and in control
of their lives. All the things that Community Inclusion programs were created
for. Apparently, the government thought these things aren’t important for people with
disabilities.
What’s important to the government is that we pour the majority of the (limited) resources into
getting people jobs. And that’s a worthwhile goal, it really is. Having a job gives
people money, which gives people control, and that’s something people with
disabilities often lack. In fact, most of the challenging behavior I see comes
from people who have a lack of control, and I am all for helping them get
control in safe ways. By all means, if someone can get a job, we should support them in doing so.
But: it feels like we sacrificed the quality of life of the
people with the most profound disabilities, the ones who won't benefit from the employment programs because they lack the physical or cognitive ability to do the kind of work that employers are willing to pay for.
I understand why legislators and lawyers made the decisions
they did, I really do… and maybe they meant well. But the end result is that
people’s lives suffered. This beautiful and worthwhile endeavor;
this place that ensured the most easily
overlooked people would have a time and place each day to get
someone’s full attention; this place that brought joy into lives that had
been joyless; this place that gave a predictable routine and rhythm to lives that used to be in chaos; this place that helped the world's most lonely people to build this
wonderful, quirky little community where they were happy, safe, and comfortable... all this was disbanded because
it was no longer considered worthwhile by people who had never even seen it in
action.
All through the past month, I’ve had a line from the
Kipling poem “If” running through my head:
“If you can bear to see ... the things you gave your life to, broken,
And stoop and build ‘em up with worn-out tools…”
I hope we can rebuild, in some way, what that program had
achieved. I sure as hell am gonna try.
But for now, I grieve for what’s been broken.
