Carol and Jacob Glazer in New York City in August 2015 |
Twenty four years ago my son, Jacob, was born with hydrocephalus, or water on the brain. After several surgeries, doctors told us Jacob would be living with both physical and intellectual disabilities. They also told us not to expect much of Jacob in terms of his ability to participate in civic life, community life and in work. And they plunged us into what I now call the “The Tyranny of Low Expectations.”
All these years later when people speak to Jacob, they still infantilize him, speaking slowly, avoiding big words, as if he’s a toddler. It may not seem like a big deal, but for people with disabilities and their families, it is among the largest challenges we face. Like Jacob, it starts early in life for someone born with a disability, or after acquiring a disability for those who do so later in life. The bar on expectations for that person is often set so low by doctors, teachers, friends and even families that the person with a disability lives with artificially low ceilings.
The reasons for the tyranny of low
expectations are rooted in our societal approach to disability, which
has historically been viewed as a problem to be fixed (and in many cases
feared or isolated), versus a natural part of the human condition that
each of us is likely to encounter in our lives. In the past, people with
intellectual disabilities were sent away from their families to
institutions, where they would not be threats to public safety. I
shudder when I think how, if Jacob had been born only 20 years earlier,
he’d likely have been taken away from me.
We’ve also viewed disability as a problem
whose responsibility to find solutions rests with the individual, not
with the community or our collective society. The passage of the
Americans with Disabilities Act 26 years ago this week effectively
declared that people with disabilities had a right to participate in all
aspects of life, in their community and the workplace. And our
society—our builders, our bosses and our brethren—has to provide
reasonable accommodations to enable people with disabilities to
participate.
But we have not yet raised that low-set
bar on expectations that means most Americans with a disability receive a
continuous flood of signals—some intentional, some not—that tell us
that we cannot really expect to work, or learn or participate equally.
How do these signals manifest themselves?
As children, while the special education system teaches independent
living or “life skills” (like cooking, personal hygiene and travel
training), far too little attention is given to skills that can be used
in the workforce. It’s no wonder then that only about one in five working-age Americans with disabilities is employed.
The public benefits system—despite efforts at reform—reinforces the
expectation that people with disabilities aren’t expected to work; and
an outdated statute from 1938
means that people with disabilities can still be paid less than minimum
wage to perform menial tasks in a segregated work setting. Proposed new
federal legislation aims to remedy that problem, but it has yet to
pass.
Every parent hopes that his or her child
will become independent, contributing members of their communities,
leading full and productive lives, using and being rewarded for their
full talents and abilities. We set expectations for them and they rise
to the occasion—but we must be mindful of the expectations that we are
instilling.
Those who set the early expectations for
people with disabilities—parents, school administrators, employers and
neighbors—usually have the best of intentions. Nevertheless, many
unwittingly engage in the tyranny of low expectations, seeing deficits,
not strengths. Disability, not ability. And people with disabilities
pick up those messages. When the world doesn’t expect much of you, it’s
hard to expect much of yourself. It’s hard to believe in yourself when
others don’t. I always tried to hold the bar high for Jacob—and still
do—and today he proudly works a part-time job where he gets a paycheck
and feels valued for his work.
Those of us with a personal experience of
disability know that people with disabilities possess unique
problem-solving skills, tenacity, resilience and creativity. Employers
must understand the benefits of a diverse society that uses the talents
of its citizens to full advantage. We must change attitudes and see
strengths—not limitations. We must convert pity to high expectations and
help corporate America to recognize promising talent.
More than ever before, people with
disabilities are present throughout American society—carrying on our
daily lives as workers, consumers, students, neighbors and
volunteers—and contributing greatly to our national and community life.
But America still has a long way to go to close the gaps in levels of
participation between people with and without disabilities. We can start
by raising our expectations.
Full Article & Source:
My Son With a Disability Deserves the Same Opportunities as Everyone
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