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.