NOD News

NOD President Carol Glazer On “The Tyranny Of Low Expections”

For National Disability Employment Awareness Month this October, Carol Glazer offers an editorial on employment opportunities for people with disabilities in America.

 

I serve as president of National Organization on Disability (NOD), a thirty year old organization that’s advocated for full participation of Americans with disabilities in all aspects of life. I’m also a parent: 19 years ago my son Jacob was born with hydrocephalus and has traumatic brain injury and a combination of physical and cognitive disabilities.  I’ve been Jacob’s advocate and case manager, helping him with every aspect of his life, from birth.    

Parents who have children with physical and cognitive disabilities know that they often require keen attention to the basic skills needed to thrive in community life and the workplace. Nothing can be taken for granted, nor left to cues in the environment.  Whether it’s basic social skills like making eye contact or using a firm handshake, travel training, using money and performing basic math skills, or organization skills and executive functioning. All of it has to be taught, often drilled.

And it can take a bevy of experts in education, developmental psychology, speech and physical therapy, and vocational rehab. 

That is why I refer to myself as the CEO of Jacob, Inc

Many, but not all of us in this room know the challenges that people with disabilities face in navigating a world that so often isn’t built for them. It happens in ways we might never think about, like the person who uses a wheelchair who needs an extra two hours each day to take care of medical needs, navigate the transfers from wheelchair to automobile, as well as the streets and the accessible back and side door entrances to buildings.

For Jacob, motor planning, getting himself organized is an extraordinary challenge.  Putting a milk container back in the fridge.  Cutting his meat.  Shaving.

But perhaps the largest challenge faced by young people with disabilities is that the bar on expectations is set so low—often unintentionally—by teachers, neighbors, and even friends, and families.

I think of this as the “tyranny of low expectations.”

I’ll say more about that, but first a few factoids to set the context.

• There are 54 million people in this country with disabilities—that’s one in five Americans. 
• And for each of those individuals, there are parents, siblings, friends and co-workers.  So the number of people living with disability, is much higher, could be nine out of ten
• And as we say at NOD, disability is not only the largest minority group, it’s one that any of us can join at any time. 

For many years in this country, and even today, disability was seen not as a natural part of the human condition—one that each of us is likely to encounter in our lifetimes—but as a problem to be fixed, a disease to be cured, feared, isolated. We call this mode of thinking the medical model.

So it’s no wonder that:

• Until the ADA passed in 1990, just 21 years ago, and the rehab act before that, there was no enforcement of curb cuts, ramps, access to buildings like places of worship, concert halls, and schools. People with disabilities weren’t expected to travel, attend church, go to concerts, or even get around the streets.
• Therefore, people with mobility-related disabilities had no political power. You can’t vote if you can’t get to a voting booth. 
• Until the IDEA act passed in 1975, children with disabilities did not have the right to public education, which the rest of us take for granted.
• Until mid 1980’s, 15 states had laws on their books requiring sterilization of people with disabilities.
• It wasn’t until the 1980’s that people with disabilities were given the key to independent travel, a lightweight wheelchair you could fold up and put in the trunk of a car.
• More recently, eleven years after the ADA, hundreds of people with disabilities were trapped in the World Trade Towers on 9/11, simply unable to get out of the buildings.
• And, if my son Jacob had been born just twenty years earlier, he’d likely have lived in an institution with deplorable conditions with people heavily medicating him, waking him up at a certain time, and telling him when to go to sleep. He would not be living with me or going to school. 
• People with disabilities, especially intellectual disabilities, were seen as threats to society who needed to be isolated.
• As we celebrate National Disability Employment Awareness Month this October, we are reminded that the unemployment rate for people with disabilities is about seventy nine percent. A number that’s been virtually unchanged since the end of World War II.
• Not surprisingly, then, poverty rates are more than twice as high for people with disabilities as for those without.

Throughout modern history, people with disabilities in this country have been marginalized, not seen, not expected to participate in all the things you and I take for granted as part of our rights.  Rather, a problem to be cured, fixed, or feared.

And if you think about it, as a country, we’ve viewed disability as a problem that is solved by the individuals themselves or their family, not by society. People with disabilities are the ones who have to adapt to a world that isn’t built for them.

In short, people with disabilities have been seen for what they cannot do, not what they can do.

Here’s where the “tyranny of low expectations” comes in.

Twenty one years ago, our Congress passed the Americans with Disabilities Act, modeled after the Civil Rights Act of 1964.  It is the most far reaching civil rights legislation for people with disabilities in history. The fact that it took twenty six years after the passing of the Civil Rights Act to garner general acceptance for equal treatment of people with disabilities is more evidence of their disenfranchisement.

The passage of the ADA effectively declared that people with disabilities had a right to participate in all aspects of life, in their community, and the workplace. And society—communities, buildings, employers—has to provide reasonable accommodations or modifications to enable people with disabilities to participate. 

But even today, Americans living with a disability often receive a flood of signals—some intentional, some not—that tell them they cannot really expect to work, or learn, or participate equally. This is what we mean by the “tyranny of low expectations.”

How does this manifest itself?

In schools, children in special education are taught “independent living or life skills”, meaning cooking, personal hygiene, travel training.  But only limited attention is given to employment.

Schools are required to provide “transition” or employment services to high school students with disabilities. But this often means serving one day a week in an office, filing, or cleaning, or sorting mail.

Why only once a week? A student with cognitive disabilities isn’t necessarily expected to have a typical job in a community setting. 

Take my son Jacob. People love him. They think he’s cute and sweet, but they mainly treat him as an object of pity, not as a promising young man with an incredible sense of humor, an ear for music, and a memory that would amaze anyone, and not as someone with contributions to make to the workforce.  

When it comes to work, he has an internship for two hours a week in an office where he’s adored for his unusual traits. At this point in anyone’s life they need far more exposure to the workplace.  As a nineteen year old, he needs to learn not that he’s cute, or special, but that he is capable. And he is. 

The truth is, although Jacob needs help with the things some of us take for granted, he’s also got talents that can be trained towards productivity in the workplace just as you and I contribute. 

One of Jacob’s traits is that he’s sensitive; he picks up cues about what people are thinking.   

So if people are seeing a child with deficits, whom they feel sorry for and don’t expect much of, Jacob will pick up those cues sooner than anyone else in the room.  And if it happens in every aspect of his life, in the community, at school, in the workplace or even with family and friends, then, however many times I tell him he can, he’s gonna believe that he can’t. 

For young adults entering the workforce, the main kind of employment our system provides is a sheltered workshop—an alternative work setting in which people with disabilities are given menial tasks to perform, regardless of their talents or interests, at sub-minimum wage. Why? Because we set the bar low on what they can achieve. 

Teachers, school administrators, service providers and policymakers have the best of intentions, but unwittingly, they’re engaging in the “tyranny of low expectations.”

For adults, our benefit system sets the bar low. Cash benefits, including Social Security Supplemental Income and Disability Insurance and health insurance, like Medicare and Medicaid, are all based on not working. Working can jeopardize these benefits.  So for many who desperately want to work, it doesn’t pay to get a job.  In fact, working is a net loss. Being punished with a loss of benefits for wanting to work further marginalizes people with disabilities from society, as work offers a unique opportunity to socialize and leaves a mark on their identity.

Think about the first time you’re introduced to someone; the first question after their name is usually, “What do you do?” Policymakers who built this benefit system had the best intentions, but they often don’t expect people with disabilities to have something to contribute. 

For veterans, it’s a similar story.  Within NOD’s Wounded Warrior Careers program, more than ten percent of our caseload is deemed 100% disabled by the Department of Veterans Affairs, meaning they are believed to be unable to work. But we’ve seen just the opposite. 

Nonetheless, that disability rating is often a huge hurdle to overcome. It’s hard to see yourself as having something to contribute when others don’t. My colleague Bill Fenson, a Career Specialist with NOD’s Wounded Warrior Careers Program is working hard every day to change those expectations for veterans of the conflicts in Iraq and Afghanistan.   

As I’m sure many of you can attest, every parent hopes, regardless of their children’s abilities that they will become independent, contributing members of their communities, lead full and productive lives and use their full talents and abilities. We hope, and we set expectations high.

So while at home, I remind Jacob of his abilities by referring back to the Little Engine That Could: “I think I can, I think I can.”  The rest of the world—whether it’s neighbors, the mailman who greets him each day, or even his teachers at school—sees his disabilities. When the world doesn’t expect much of you, it’s hard to expect much of yourself. That’s the “tyranny of low expectations.”

In my work with NOD, what we try to do is change attitudes, to reorient people from seeing only a person’s disability and what they cannot do, to what they can do. To convert pity to expectation. To see strengths instead of limitations.

And there’s good news that we can all use in that fight.

People with disabilities can make extraordinary contributions to the workforce. The problem solving skills and resilience that people with disabilities use to get through daily life are all assets that can be trained towards higher productivity in the workplace. More employers are realizing that people with disabilities represent a viable talent pool. In a recent Harris survey, employers reported that their employees with disabilities have more dedication and less turnover.

Again and again, we find that changes made to accommodate people with disabilities—be they curb cuts in the streets or flexible schedules at work—result in improvements in access, quality of life, and productivity for all of us. 

Businesses, which have long recognized the importance of having a workforce that reflects their customer base, are beginning to recognize that people with disabilities (a group with discretionary spending totaling more than $1 trillion) represent a huge block of consumer purchasing power[1] and are, thus, more eager to hire and accommodate them.

And with regards to having our voices heard in the public arena, NOD’s last Harris Poll showed no difference in the voting level between people with and without disabilities.  Good signs, bodes well for the future

In closing, while there are still barriers to overcome for Americans with disabilities, most notably in poverty and employment, these barriers, I believe, are rooted in the fact that our society has long held little expectation that people with disabilities would, in fact, be contributors to our economy, our tax base and our communities. 

As all of you here know, it is not a lack of talent, drive or ambition amongst those with disabilities, but rather it is this “tyranny of low expectations” that has led to the opportunity gap between people with and without disabilities in America. 

So, the good news is that we can all play a role in changing those barriers. And I challenge each of you to be the vanguards in changing the “tyranny of low expectations.”  Start to see past people’s limitations to their strengths. And the next time you see someone in the street using a wheelchair, a cane, or a service animal, ask yourself, “is that person headed to work?”

 

Carol Glazer, President