This article by Rebecca Hastings is from Society for Human Resource Management. It contain pertinent issues for people with ME/CFS including the hurdles to finding meaningful employment while on disability. Just because one is on disability does that mean one should not be allowed to work at all? That is one of the issues that Christina Gombar, a person with ME/CFS and a Forum member talks about in this article.
Many of our fellow citizens with disabilities are unemployed … they want to work, and they can work,” said President George H.W. Bush when he signed the Americans with Disabilities Act (ADA) into law on July 26, 1990.
Nearly 20 years later, President Barack Obama said in a Sept. 30, 2009, National Disability Employment Awareness Month proclamation, “We must seek to provide opportunities for individuals with disabilities. Only then can Americans with disabilities achieve full participation in the workforce and reach the height of their ambition.”
Yet for some the dream of meaningful employment remains as elusive in 2010 as it was in 1990. And there is some evidence that the ADA might have made things worse.
“Analysts have noted a decline in the employment rate of people with disabilities in recent years, and some evaluations of the ADA indicate that, rather than increasing employment, the Act may have reduced employment for those with disabilities,” noted the November 2008 edition of the Monthly Labor Review published by the U.S. Bureau of Labor Statistics (BLS).
“Although the ADA was intended to increase employment opportunities for people with disabilities by prohibiting discrimination in the workplace and by requiring employers to accommodate the needs of workers with disabilities, economic theory is more ambiguous,” the BLS publication continued. “The major argument economists have made is that if employers perceive the costs of accommodation to be high, they will refrain from hiring workers with disabilities.”
As of June 2010 less than 22 percent of people with disabilities of working age are employed—compared to 70 percent of people without disabilities—according to BLS statistics.
Individual Experiences Vary
In the late 1980s, while working as a public relations director for a well-known Wall Street firm, Christina Gombar was diagnosed with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)—a condition characterized by incapacitating fatigue and problems with concentration and short-term memory.
When Gombar was able to return to work full time she sought accommodations, such as the opportunity to work from home a couple of days a week, a “perk” that was resented by some of her peers: “people just didn’t return my e-mails or look at the work I sent in,” she said.
Deborah Lewis, a warehouse manager at a big-box retailer, experienced a similar reaction when she was diagnosed with fibromyalgia, a chronic condition characterized by widespread muscle, ligament and tendon pain and fatigue. Though Lewis’ co-workers knew her to be a hard worker prior to her diagnosis, she said their attitudes changed after her physician placed restrictions on the type of work she could do as a result of “a condition they had never heard of and couldn’t see.”
“Some people actually told me I was putting on,” Lewis told SHRM Online. “I have been dealing with that attitude from a lot of people now for over 20 years. People won’t believe what they can’t see.”
Neither Gombar nor Lewis is employed today.
“I was unable to find any kind of job for over four years,” Lewis said. “The little box on a lot of applications that asks if you have any limits or can you lift, bend, reach and so on, put me out of the race every time.” She now teaches art classes at her home-based studio.
Yet Gombar and Lewis want jobs.
“I would give anything in the world if I could work, but now it’s much more obvious that I am disabled,” Lewis said. “I can’t even get an application. No one wants to take a chance that something might happen to me and that I would sue them.”
“So many employers are missing out on well-educated people just because they don’t fit into their image of what an employee should look like, act like or sound like,” she added.
“I would love to go back to work … but no one wants to hire someone with a health/work history like mine,” Gombar said. “I would love to just freelance, but again—not enough income and no health benefits. I’m stuck.”
An Employer’s Experience
Susan Loynd, SPHR, director of human resources for Washington County Mental Health Services (WCMHS) in Montpelier, Vt., an agency that helps people with disabilities find employment, has first-hand experience employing people with disabilities. Many of WCMHS’s employees have cognitive impairments, developmental disabilities and mental disabilities and work as “client-staff” offering peer support and a positive role model for other clients.
“Our client-staff are some of our best employees because … they’ve been marginalized … they’ve been treated really badly,” Loynd said. “When we hire them they are so thrilled to be given an opportunity, to give back to their community, to be paying their way.”
“Employers need to see that people with mental disabilities are just like everyone else,” Loynd added. “People have these stereotypes about disability [but] until they work beside someone else they just don’t know.”
Loynd, a member of SHRM’s Workplace Diversity Special Expertise Panel, said the stigma surrounding mental illness is an ongoing barrier for some individuals. “People are fearful that someone is going to yell and scream and behave badly,” she told SHRM Online. Yet when crises occur in her community, Loynd said their clients are not usually the ones to blame. “It’s people who are not aware they are experiencing some sort of psychological issue,” she said. “Our clients have been in the system for many years so they know what triggers them and know what the resources are,” she explained, and are “usually in a better place to manage that kind of stress.”
Many Face Bias
Individuals with disabilities face the same biases today that they faced before the ADA was enacted, according to Mike Purkey, executive director of ICON Community Services, an employment service that specializes in placing people with disabilities. “We’ve come a long way baby, but we’re not there yet,” he told SHRM Online.
The ADA was “a much needed piece of legislation,” Purkey said. “It made people a lot more aware of people with disabilities and the fact that they are in the workforce.” But he said that many employers lack understanding and hold preconceived notions about people with disabilities—whether they acknowledge them or not.
“I don’t think the employer wakes up in the morning and says ‘I am not going to hire people with disabilities because they are trouble,’” he said. “But [the ADA] scares businesses, who fear they will get sued.”
Kate Cullen, a human resource professional in the Washington, D.C., area, said ongoing education can help hiring managers overcome ignorance and risk-aversion, which she said are the biggest obstacles to the full employment and integration of people with disabilities into the life of an organization.
Companies lauded for achieving high performance from large numbers of employees with cognitive disabilities—such as Walgreens andCincinnati Children’s Hospital—started with a clear vision of what they wanted to achieve, and believed that even those with cognitive disabilities would be assets.
And, as SHRM has reported previously, they were right.
Such success stories can motivate other businesses to follow suit.
Nereida “Neddy” Perez, vice president for inclusion and diversity at National Grid, one of the world’s largest utility companies, said that in 2009 her company began making “a concentrated effort to establish strong external partnerships with professional associations interested in the advancement of people with disabilities.”
“We established two new employee resource groups (Veterans and Enabling),” Perez added, “to help increase awareness about career advancement opportunities within the company as well as help us identify areas where as a company we could eliminate obstacles/challenges.”
And the company anticipated the needs of applicants and employees with disabilities by completing a facilities audit and by developing a team approach to workplace accommodations “to ensure that we address all of the needs of the employee,” she explained.
But Perez, a member of SHRM’s Workplace Diversity Special Expertise Panel, said there was more her organization could do. “We will look for ways to connect our internship program to any organizations that provide interns who are disabled,” she told SHRM Online. The company plans to train managers on interviewing skills for working with people with disabilities as well.
Some Mostly Positive Experiences
Cynthia E. Kazalia, a placement specialist for New Directions Career Center, a Columbus, Ohio-based nonprofit organization that assists individuals in career transition, said her bone tumors might impact her range of motion and balance but they haven’t affected her career.
“Is it possible that I did not get a position over the course of my career due to the bone tumors?” she asked. “Sure. But an interviewer might have also turned me away because I laughed too loud or reminded them of their ex-wife.
“That said, I am not unenlightened about the existence of prejudice,” Kazalia told SHRM Online. “Once, on a summer job, an attorney told a joke that ended with, ‘That’s what happens when you hire the handicapped.’ A horrified look then crossed her face as she focused in on my presence. ‘Oh, Cindy,’ she said. ‘I’m so sorry.’ The apology left me baffled until it occurred to me that she considered me disabled.”
“John,” a mid-fifties senior engineer with a congenital birth defect of the spine, said he has had no difficulties gaining employment throughout his career because people with his degree were in demand and employers were willing to “look past” his disability, which requires him to use braces, crutches or a wheelchair to get around. He requested anonymity for this article because he said his employer, a major defense contractor, “thinks they are doing what is best for me and I don’t want feelings to be hurt.”
“With my latest job change my employer has probably gone out of their way more than any other to make physical plant changes to make my life easier,” he noted. “However at the same time, in some areas they don’t seem to listen to my true needs and as a result money and time is wasted changing things that don’t need to be changed while ignoring things that do. This all seems to fall under the category of ‘I think I know what’s best for you and you don’t,’ ” he added.
Though his experiences have been largely positive, he too has faced a few challenges.
“For the most part my input and work efforts appear to be respected and appreciated,” he said. “However there are those who, for whatever reason, appear to be very uncomfortable with and around me.”
And in some cases, he said, he is treated like “the poster child” for those in the facility with disabilities. Therefore I end up with trying to deal with the often uncomfortable task of speaking for all those in our facility with a disability.”
The Legacy of the ADA
Loynd said the ADA was a good start. “I think there are a number of folks who, but for the ADA, may not have had an opportunity at all,” she said.
Paul Miller, program director of the Green Mountain Workforce supported employment program at WCMHS, said that the ADA helps “keep bigger companies honest” and helps to create a dialogue: “It’s like having the big guy on the block standing behind you while you’re asking the kid next door for your $5 back.”
Perez said the ADA has “helped to raise awareness of the challenges faced by people with disabilities and establish guidelines that help businesses better understand what is expected from them.” But she said more work is needed, and that HR professionals “need to take the lead in addressing and eliminating the unconscious biases that exist in our work environments that sometimes impede the hiring of people with disabilities.”
This means holding leaders accountable for recruiting people with disabilities, she said, as well as challenging leaders’ perspectives about people with disabilities “the moment that someone makes an inappropriate comment or exhibits a behavior that is not professional.
“As HR professionals we have a responsibility to ensure that we effectively leverage the talents and skills of all employees,” Perez added. “If we see and know that there are barriers in the workplace that prevent an employee from being successful then we have a responsibility to address the issue.”
“Given the anticipated labor shortages that are coming up, look to a nontraditional workforce,” Loynd said. “Don’t back yourself into a corner when you are looking to hire people.
“Instead of putting an ad in the paper and talking to the first three people that walk through the door, widen the net,” Loynd said. “I guarantee if any one of these HR professionals called [WCMHS] and said ‘I need a couple of employees’ [agency staff members] would fall out of their chairs. We have a backlog of people waiting to work.”
An Open Mind
“Half the battle is having an open mind. Realize that you have many folks working for you who have mental health challenges right now,” Loynd said. “I work with these folks every day—there is no difference between folks that have a mental disability and anyone else.”
“While we should not let disability be a barrier to employment, we also need to be mindful that we don’t hire an applicant ‘because’ of their disability,” Miller noted. “Applicants are not their diagnosis.
“We need to remind all staff and community members to think outside of the disability,” Miller said. “Ideally, we should be treating everyone the same. Everyone is important, but not necessarily unique or special.”
When Purkey meets with business leaders he sometimes asks them what a person with a disability looks like, or to name a person with a disability. He then uses examples such as former Sen. Bob Dole—whose war wounds left him with limited use of only one hand—and Sen. John McCain—who cannot lift his arms above his shoulders—to illustrate that people with disabilities are everywhere and can hold positions of power.
“If we stop looking at disability as something scary, abhorrent, we can look at it as ability,” he said. “We all have things we do really well and things we don’t.”
Rebecca R. Hastings, SPHR, is an online editor/manager for SHRM.
Government Faulted on Hiring, Retaining Workers with Disabilities,SHRM Online Diversity Discipline, April 6, 2010
An Underestimated Talent Pool, HR Magazine, April 2009