By JERRY WOLFFE
Potholes or people – that is the question.
In most of human history, those of us with severe physical
disabilities or, in many cases, mental illness never lived much beyond infancy.
However, with “modern medicine” and human services organizations those with
disabilities are living into middle age and beyond because we are being treated
humanely.
Some say this is a burden on society because some need
caregivers, expensive medications and costly durable medical equipment.
But we are at a point where we, as a species, must decide if
we are going to do what’s right – and that is being realistic and paying more
of our income so that those of us with disabilities, who cannot work and need
extensive medical care, get more than “three hots and a cot.” Life is far more
than a place to sleep and enough food not to starve. It’s about having a chance
to be, to have friends, to set and achieve goals or just to enjoy life. Other
countries such as Sweden, Denmark, England, Norway, and Canada already follow
this paradigm.
The fact that someone with a disability didn’t have to live
in a state institution began in Michigan about 45 years ago. Organizations such
as the Macomb-Oakland Regional Center and others found a way to use Medicaid
funds and general funds to close all 12 state institutions where we, those with
disabilities, had been housed for decades. Their courage helped move 13,000
people with disabilities out of the giant gray institutions into neighborhoods
with community supports. Today, those institutions are closed and those with
disabilities live in the neighborhood.
My own life was spared from such a fate when my father and
mother told a doctor to get “blanked” when he said: “It would be better for
everybody involved if Jerry was institutionalized.”
My dad took me, a 2-year-old, into the hall of the doctor’s
office and said, “We’re going to raise you to be normal” and my dad Vincent and
my mother Carol did. My sisters Nancy and Rene helped immensely after they were
born a few years later.
Part of my father’s motivation “to save Jerry” may have been
that this older brother Alex and sister Bernadette died in a state institution
in Wayne County. My Uncle Alex had cerebral palsy, the same disability I was
born with, and my Aunt Bernadette incurred a spinal cord injury in a fall down
some basement steps. I saw Uncle Alex one time at Eloise, sitting in a chair in
a gray shadowy room. I cried because it was evil. I never saw my aunt.
I and the many others I know that have disabilities who
escaped the state institutions have contributed to the betterment of society in
some way. The fact that we are in public in greater numbers now is helping to
reduce the stigma I faced as a teenager when every time I went into a
restaurant or movie show people would stare at me. Imagine now that people help
me get my wheelchair out of the back of my SUV and talk to me as if I was
“really normal.” Well, they know that I am.
We also have the Americans with Disabilities Act that I had
a tiny hand in implementing since 1990 which guaranteed remedy if a person with
a disability was discriminated in the work place, stores, in a state program,
or unable to use the communication or public transit system. We’re not there
yet in making the law reality, but we are slowly gaining access to jobs and
more stores now are accessible to a wheelchair user like myself than are not
accessible. We don’t have to sit in a house or room and just stare at the
walls. We can go out into the sunshine like anyone else.
The state of Michigan has at least a $1 billion surplus from
the current fiscal year. Many people say the excess should be used to fix the
horrific potholes. I see their point, but I say let’s make sure that the
agencies that care for those of us with disabilities don’t have to face financial
cuts being implemented right now.
Some of the 10 Community Mental Health Authorities in the
state are having funding shortages, putting at risk the providers who help give
those with disabilities a home and safe environment. It’s a darn shame and
morally inexcusable that the average caregiver in most places is paid an average of
$9.06 an hour, but the budgets have no flexibility with many bordering on
collapse if funds are cut further.
I say take a few percent of that surplus, give it to the
CMHs that need it, raise the hourly rate of caregivers, allocate a certain
percentage of the Lottery surplus or casino money or pass a new tax for those
earning $340,000 or more a year so we can take care of those of us who were born or
acquire a disability. The bottom line is that 8 million of the 10 million
people in Michigan are just temporarily able bodied until illness, an accident
or age transforms you into someone who can’t function “normally.” Michigan has
about two million who already are living with disabilities.
If we make better use of available funds and “work it out,” you’ll
know I am right. But why wait? Let’s help one another ASAP as we, all disabled
children, did at the Leland Orthopedic School in kindergarten class when
stronger children with disabilities helped those who had more extensive
disabilities. We lifted each other up and the entire group survived and
inspired even our teachers.
Society should be about helping one another make it. It’s
called “Love thy neighbor as thyself,” a concept that’s 2,000 years old. Let’s quit
gabbing and really do it.
Jerry Wolffe is the
writer-in-residence and advocate-at-large of the Macomb-Oakland Regional
Center. He can be reached at (586) 263-8950.
