Geraldo
Rivera. He is well known as a
journalist and media personality with a flair for the dramatic. While not currently one of my favorites in
the field, his expose’ back in 1972 of the Willowbrook State School on Staten
Island would lead me to become involved in a short lived career years later in
rural Illinois that would be one of the most eye opening and influential
experiences of my life. The opportunity was
at the same time both heart wrenching and rewarding in the deepest sense.
For those not
familiar with the expose’ Willowbrook would become synonymous with the mistreatment
of the retarded and mentally ill (often lumped together as one group). It was a situation that would lead to massive
changes for how we treat some of our most vulnerable citizens today. My story is about some people I worked with
and for in the 1970s.
It is neither an
indictment nor judgement of any individuals or a system that was in place back
in the late 40s through the 70s (There is no value at this stage in pointing
fingers). It is simply a story about hurt and hope.
Some of the
names were Franklin, Gladys, Doug, Gene, Roberta, Emory and Manning, who were
brothers, Elizabeth and so many more too numerous to list here. They came from places in Illinois with names
like Alton State Hospital, Chicago State Hospital, Dixon State Hospital, The
Neuropsychiatric Institute and many more.
While initially the goals of these “hospitals” were somewhat laudable,
or at least well meaning, (the history of these types of places varies from
state to state and country to country) in most instances they ended up becoming
holding pens, places to control and hide a segment of the population that most
people did not want to deal with. In
many instances conditions deteriorated to the point of mistreatment or outright
abuse that often led to premature deaths as was the case at Willowbrook.
Barb came to us
(the staff at a sheltered workshop in central Illinois) with a severely bent
frame which included a deformity where she could not raise her head up
straight. We learned that it was because
of hours and hours of sitting in a hallway with nothing to do for days and
weeks and months and years. Yet she
could still warm your heart with a smile.
Elizabeth was
another sad story. She was forced into
an institution by relatives who found the required number of doctors to sign
forms that indicated she should be put away.
We soon learned she had not been retarded or mentally ill and yet she
was sequestered for decades with people who were and subsequently she took on
the persona that was the norm in order to get by. Yet she could still smile and often did.
There was
Franklin who, like many others had been put on Thorazine and other such
“medications” that left him pacing up and down all day repeating many of the
same phrases over and over (I remember one
was about helping his dad with a Chevy when he was a kid) and constantly
rubbing his head. Often he would look for cigarette butts on the floor. The withdrawal from these powerful drugs is
very painful for the person on them as well as those who observe the withdrawal,
for different reasons. In most cases
the effects of these drugs were irreversible.
Yet Franklin could smile as well and give a quick hug as he passed you
while pacing. Actually any kind of caring human touch was more than welcome
from most of our friends having been in places where human contact was mostly
in the form of being herded from one place to another, often in a manner that
was abusive, within the institutions from whence they came.
Doug
was, by most standards, unattractive and made strange noises. Gladys babbled on about nothing thinking she
was being quite eloquent. Gene was
abnormally quiet. He, like many others
coming from the institutions, was not trusting of those in places of
authority. Yet (you guessed it) most had
very engaging smiles.
For the most
part social skills were non-existent. The
reason for this could sometimes be attributed to legitimate, verifiable
conditions but for the most part it was because no one treated them as beings
worthy of verbal exchanges. They were
mostly spoken at instead of to or with.
When they came
to the sheltered workshop in the morning they all seemed happy to be there.
They had somewhere to be that was at least somewhat stimulating and as a staff
we were determined to make their lives a little better hoping to help them find
a sense of purpose, pride and fulfillment.
Of course we were underfunded, as was the case at that time for most
programs trying to handle the flow of people being de-institutionalized, but we
had amazing staff that could make a little go a long way.
There was Cookie
and Jimmy a hippie couple who constructed their own yurt and did quite well
living off the land. But they didn’t
just “turn on, tune in, and drop out”.
They took their skills and talents and ran the arts and crafts part of
the program getting people who never created anything to fashion some great
pieces of art using pasta, yarn, glue and other types of media associated
mostly with kindergarteners but to these folks were items that let them express
themselves for the first time ever and they were quite proud. It was for most of the people the best part
of the day.
There was Cindy
who led the daily living skills class, no small task as many of our folk had
never even been taught even basic hygiene.
She was 70ish, sharp as a tack and could relate to these people as well
as anyone I had seen up to then and since.
It was a beautiful thing to watch her interact with them treating them as
equals and beings of value. She was
everyone’s Grandma in the best sense of the moniker.
Susan was the
nurse par-excellence. Distributing pills
was her main responsibility (not easy as there were many to pass out). Her demeanor, while carrying out her job was
her best medicine. Then there was Carol
who taught speech both individually and with small groups. Trying to teach “speech” to older people with
tremendous impairments is almost hopeless (I know because I would fill in for
her on occasion) yet somehow with her skills and upbeat personality she was
able to help her clients communicate on a level most would consider basic but
for many we served was a great accomplishment.
I could go on
and on about the individuals who were cared for and their caregivers. For me it was an experience which even today,
some 40+ years later, I find myself getting emotional over. Both from the sadness and hurt our friends
endured physically and, even more so, emotionally and psychologically but also
because I do remember the triumphs (as small as most were) and the feeling that
what we all experienced was something special.
Then, of course, there were the smiles, wonderful smiles emanating from
people who had every reason to remain angry and bitter but who chose instead
not to dwell there.
