Evolving employment paradigms for PWDs
Text and photos by Alexie Villegas Zotomayor
“Attitudes of people with disabilities need to change. We need to set the bar higher for ourselves.”
This is the challenge issued by a visiting California cabinet member in the recently concluded National Disability Employment Awareness Month Summit at the Hibiscus Hall of Fiesta Resort & Spa Hotel.
In his keynote address before participants of the 2008 NDEAM Employment Summit, California’s Department of Rehabilitation director Anthony Sauer called on people with disabilities to rise above the challenge and overcome fear of going to work.
“Disincentives to go to work are changing. Don’t be afraid to take the risks. Don’t be afraid, if you have disability, to go to work and move along.”
A paragon for those with disabilities, Sauer has been paralyzed from waist down since encountering a motorcycle accident at 18. But Sauer did not sulk and allow his disability to take charge of his life. With a strong will, he triumphed against difficulties and managed to earn graduate degrees and reap success.
Citing anecdotes and personal experiences, Sauer called on people with disabilities to make a difference. “You in this room can make a difference. You can choose the way things are done in the CNMI.”
Direct and frank, Sauer talked about the need for people with disabilities to change their attitudes.
“Many PWDs have a perspective that they can’t work—from their experiences or the words of ‘well-meaning’ professionals and friends. I’ve experienced that look in a potential employer’s eye, or the leading questions that make me know they are not going to hire me. It’s painful, very painful. You in this room can change this and I urge you to just do that,” Sauer said as he hit a poignant chord with his audience.
Relying on his experience fraught with encounters with prospective employers who denied him the opportunity of employment, Sauer lambasted at those who see people with disabilities as a liability in the workplace, saying “We should not discriminate based on disability.”
In his keynote speech at the NDEAN Employment Summit on Saipan, Sauer traced the history and evolving employment paradigms for PWDs.
People with disabilities, Sauer narrated, have either been taken care of by their family or have been forced to beg to survive throughout history. He told his audience that very few PWDs were allowed to work, “let alone expected to work.”
Sauer claimed that in the past, people with disabilities were shunned and hidden from society, “forgotten in the backrooms of their homes or prisons, sometimes (relegated to places) called ‘institutions or sanitariums’.”
Mandating a vocational rehabilitation program
But key turning points in the 20th century changed the world’s perspective of disability with the war veterans making an impact in the society and the polio epidemic that overran the world leaving many victims in its wake.
On the coattails of the veterans’ coming out of the war with disabilities, pieces of legislation in the US Congress have been enacted into law.
Sauer began his discussion with the Soldier’s Rehabilitation Act of 1918 and the Smith-Fess Act of 1920. Sauer told his audience that the Smith-Fess Act or otherwise known as the Civilian Vocational Rehabilitation Act (Public Law 236) set forth a vocational rehabilitation program for people with disabilities that allocated $750,000 for the initial year of implementation and infusions of $1,000,000 for each succeeding year for two years.
Sauer said the act provided for the funding that would defray costs of vocational guidance, training, occupational adjustment services, and job placement.
Although the US Congress had created a federal vocational rehabilitation program by virtue of this act, the program remained subject to periodical vote by the US Congress to reauthorize it.
Then Sauer proceeded to discussing the Social Security Act of 1935 and discussions that began in 1936 of measures that would provide the Social Security Disability Insurance in the executive agencies and Congress culminating in the measure becoming law only in 1956 with Lyndon B. Johnson as Senate Majority leader. This significant piece of legislation concerning people with disabilities had been passed into law with 47 in favor over 45 votes in the US Congress.
Research on disability policy and history revealed that the measure had had to go through a long period of modification.
In a statement before the Subcommittee on Social Security of the Committee on Ways and means by Professor Edward D. Berkowitz of George Washington University, he told the legislators in 2000 that planners in the Social Security Administration had been considering the measure as early as 1936 and devised a program that “they felt could withstand pressures of depression, citing, for example, a tough definition of disability, distinguishing it from unemployment.
Based on Professor Berkowitz’ statement before the committee, he said, “Instead of adopting a definition similar to the ones in the existing workers’ compensation and veterans’ pension laws, they chose to define disability as ‘an impairment of mind and body which continuously renders it impossible for the disabled person to follow any substantial gainful occupation’ and was likely to last for ‘the rest of a person's life’."
Given a tough definition like this which is similar to the present law, Professor Berkowitz argued that many doubted the ability of federal officials to administer a disability program.
He said, “As an actuary who served on the 1938 Social Security Advisory Council put it: ‘You will have workers like those in the dust bowl area, people who have migrated to California and elsewhere, who perhaps have not worked in a year or two, who will imagine they are disabled.’ The actuary warned that unless a highly qualified medical staff examined each applicant, the cost of the program would be higher than ‘anything that can be forecast’. "
He also declared before the committee “although the Social Security officials sought a strict definition of disability, they knew that, if the program were administered in too severe a manner, then the courts and the Congress would act to make federal officials admit more people to the disability rolls.”
He further added, “One of the principal Social Security researchers thought of disability as an elastic concept. ‘Too strict a system invites pressure to swing in the opposite direction,’ he said. His remarks foreshadowed the volatility that would accompanied disability insurance after 1956 and in particular the sequence of rapidly expanding rolls in the 1970s, attempts to stop the growth of the rolls in the early 1980s, and the rise in the rolls in the later 1980s and early 1990s.”
Going back to Sauer’s keynote speech, he discussed the evolution of disability policies from 1935 to 1972 and cited Randolph-Sheppard Act and the Wagner-O’Day Act of the 1930s that sought to purchase products from workshops for the blind that opened employment opportunities for those in the workshops.
He also spoke of the Barden – Lafolette Act of 1943 that “expanded eligibility for vocational rehabilitation services to mentally retarded and psychiatrically handicapped individuals.”
With the Rehabilitation Act of 1973, Sauer said, vocational rehabilitation program was made first priority to serve severely disabled individuals with the behavior disorder category discontinued and consumer involvement stressed by requiring their involvement in the development of their Individualized Written Rehabilitation Program (IWRP) with the consumer made to sign the plan indicating they understood it and approved.
Sauer said that at that point in American history, a political debate was ensuing regarding turning the program into a comprehensive rather than a strictly vocational rehabilitation program.
“The act authorized funding for demonstration independent living centers that could work with individuals regardless of vocational potential, but a vocational objective and feasibility of reaching it was maintained as an eligibility requirement for the state-federal program. The act also stressed program evaluation and supported rehabilitation research,” said Sauer adding that the Americans with Disabilities Act signed by President Bush in 2000 mandated similar provisions to state and local government as well as private sector.
The American with Disabilities Act was signed by President George H. W. Bush into law on July 26, 1990 creating the world’s first comprehensive civil rights law for people with disabilities and is often described as the Emancipation Proclamation for the disability community. The Act prohibits discrimination against people with disabilities in employment, in public services, in public accommodations, and in telecommunications.
According to Sauer, throughout the 20th century, numerous programs were created to “take care of PWDs” which began to change in the 1970s that saw the rise of “Disability Pride” or “Crip Pride.”
With the “Disability Pride,” Sauer segued into discussing the key social changes that led to the Independent Living Movement: Civil rights movement, consumerism, self-help, de-medicalization and de-institutionalization.
Stories of Independent living
In discussing this, Sauer cited several experiences of people who have become precursors of independent living.
He noted the exemplary life of Ed Roberts who was referred to as the father of independent living.
Sauer narrated that Roberts became a quadriplegic as a result of his contracting polio as a 14-year-old and had been using an iron lung every night and breathing machine attached to his wheelchair in the daytime.
Using Roberts’ own words, Sauer narrated, “I contracted polio when I was 14. I had a serious fever, and within 24 hours, I was paralyzed and in an iron lung. Within earshot, my mother asked the doctor whether I would live or die. ‘You should hope he dies, because if he lives, he’ll be no more than a vegetable for the rest of his life. How would you like to live in an iron lung 24 hours a day?’ So Ed said, ‘I decided to be an artichoke…a little prickly on the outside but with a big heart. You know, the vegetables of the world are uniting, and we’re not going away.”
A bright young man, Sauer said Roberts was accepted at the University of California at Berkeley in 1962. Unbeknownst to campus officials Roberts had a significant disability that by the time he arrived on campus, he was told, “We’ve tried cripples before and it didn’t work.”
The university, according to Sauer, reluctantly admitted him and made him live in the campus medical facility called the Cowell Hall.
It was Ed’s brother, who served as an on-campus PA, who moved him from one class to another in his old manual wheelchair.
In the 1960s, when Ed came to the DOR, Sauer said, “he was deemed too disabled to work.”
But Sauer noted that a twist in his fate happened in 1974 when Gov. Jerry Brown appointed him Director of DOR.
For his strong will and exemplary life, when Roberts died in March 1995, his wheelchair was enshrined at the Smithsonian for everyone to remember him by and give hope to those with disabilities.
For Sauer, his experience was much different than Ed Roberts’.
Extending his gratitude to those countless advocates who blazed the trail for him, Sauer said his VR counselor worked with him to strategize his future and helped him get past the agonizing months following his paralysis.
Sauer looked back, “I began believing in myself again and started seeing all the possibilities instead of the doom and despair that was lingering around me in the hospital those early days.”
He profusely heaped praise and gratitude to his VR counselor Bill Hendricks whom he said “listened and encouraged me. At times he would gently nudge me back to reality but he never discouraged me from my goal of becoming a self-employed cabinet maker.)
From the shadows and into mainstream
Sauer, in issuing the call for people with disabilities the move into the mainstream, quoted Roberts’ as saying, “We used to talk about hiring people with disabilities as a moral issue—‘it’s the right thing to do.’ The government and communities set up sheltered workshops and set aside programs ‘to make work” for some people with disabilities. Some of those programs still exist and many see them as a valuable resource. My hope is that we can move people with disabilities out of the shadows and into the mainstream.”
For Tony Sauer, “now we see it as a practical issue—having hard working, reliable people is good for the bottom line. There needs to be a place for everybody—in our communities, in our schools, and in our workplaces.”
Establishing rapport with his Saipan audience, and looking them into the eye, Sauer encouraged them to “please continue to do your part and spread the word.”
Social Security’s a big part of the problem
Sauer acknowledged society set up a system full of disincentives for people with disabilities.
“Our Social Security system has discouraged work at many turns forcing people into a dependency mentality that perpetuates poverty and perpetuates welfare for PWDs,” Sauer said.
Citing his own story, Sauer told his audience that the first couple of years after his disability, “I remember my annual Social Security reviews were agonizing and degrading.” When he started working, Sauer requested in writing to Social Security to stop sending him checks.
Moreover, Sauer also cited the story of Catherine, a power wheelchair user with significant disability. According to Sauer, when she began working, Social Security sent her a letter indicating she’s no longer disabled. To this, Catherine, he said, remarked, “Great! Now I can join the Air Force.”
For Sauer, there is hope. He said SSA is making it easier for PWDs to work while still maintaining the safety nets they need to survive and receive health care.
Set yourself free
Having gone through the difficulties and surviving the struggles in life, Sauer challenged people with disabilities to be independent and raise the bar for themselves.
“When a PWD goes to a benefits counselor, many times they are coached on how to receive and stay on public benefits, not how to get off. Is a life of poverty really what we should be encouraging?” said Sauer telling the audience that disability should not be an excuse.
“If you’re not making a difference, you’re making excuses, “ said Sauer encouraging people with disabilities to believe in themselves, stop wallowing in fear, and make a difference.
He did it. So can the many others.