Her co-workers had no idea how much Stacia Guzzo was struggling. When her fibromyalgia flared up, the high school English teacher ached with such intense, flu-like pain that she’d have difficulty concentrating. Some days, she’d lie down in the faculty room or crawl into bed as soon as she got home. But because she was afraid she’d be seen as lazy or unprofessional, Stacia hid her disability. The mom of two sons told none of her colleagues she suffered from a chronic illness.
Robyn Powell’s experience was quite the opposite: At any job, she was “outed” as having a disability the minute she showed up for an interview, when instead of focusing on her excellent credentials, hiring managers would see only her wheelchair. For Robyn, who has used a wheelchair since childhood due to the genetic condition arthrogryposis, job interviews would be cursory—and not always polite. Once she was even told outright that no one would hire a social worker in a wheelchair.
Then there’s Leah, who has been ostracized and harassed while working office jobs at various companies. Diagnosed with Asperger’s syndrome, Leah disclosed her condition just once to request an accommodation—only to have it go terribly badly. (She asked that her name be changed for this article because she worries public disclosure will compromise her career.)
74% of people with a disability have disclosed it to their employer, but only 68% of women have disclosed versus 80% of men.
In the United States, 1-in-5 people are afflicted with some form of disability—a physical or mental impairment that substantially limits one or more major life activities. Those with disabilities make up the biggest and fastest-growing minority group in the U.S., with contributing factors including an aging population, returning military veterans, and young adults struggling with autism and other conditions.
To investigate how people with disabilities, both visible (such as being physically impaired or blind) and nonvisible (such as mental disorders like autism and bipolar disorder, and hidden physical ones like chronic fatigue syndrome or diabetes) fare in the workplace today, the Working Mother Research Institute (WMRI), in partnership with the National Organization on Disability, surveyed nearly 1,400 people with a variety of disabilities. See Type of Disability Here.
A crucial finding of our PricewaterhouseCoopers sponsored report Disabilities in the Workplace is that like so much else at work, disability is a heavier burden for women than for men—compounding other struggles like unequal pay and lack of accommodations for moms. And women whose disabilities are not visible, like Stacia and Leah, are often further burdened as they wonder if (or when) they should tell their employers about their situation. Afraid they’ll be seen as incompetent, these women too often keep their challenges to themselves. “This study highlights striking differences in workplace satisfaction among women with disabilities as compared with their male counterparts,” says PwC Diversity Strategy Leader Jennifer Allyn. “But even more important, it sheds light on straightforward actions businesses can take in order to positively impact the workplace experience for this broad demographic.” (Find examples in “All-Access” below.)
The Stereotype Struggle
Certainly, people with disabilities face a troubling history of bias both in the workplace and in society. “When you talk about social stigma and disability, you have to start with the fact that for decades it was codified into law,” says Rebecca Cokley, executive director of the Washington, DC-based National Council on Disability, the mom of a young son and daughter, and a little person. Until the mid-1970s, several cities and states had so-called ugly laws, which stated that if you were “unsightly”—with a disfiguring scar, an impaired gait or a genetic condition such as achondroplasic dwarfism like Cokley’s—it was actually illegal to be out in public. Even today, if you have a visible disability, “the big challenge is getting hired,” says Boston-based Robyn, who, after her experiences with hiring discrimination, studied law and became an attorney specializing in disability in 2007.
46% of people and 48% of moms with a disability have problems managing work and family demands, compared with 29% without a disability.
Nearly 18 percent of people with all disabilities were employed last year, compared with 65 percent of the general public, according to the Bureau of Labor Statistics. “There’s a general assumption that disability means inability,” says David Michael Mank, Ph.D., director emeritus of the Indiana Institute on Disability and Community and a professor at Indiana University. “The unconscious assumption is that because one thing is difficult or impossible for someone, then lots of other things must be as well.” That thinking is flawed, of course, as everyone has aptitudes and limitations. And today, nearly everyone benefits from assistance, whether it’s eyeglasses, a GPS, a calculator or medication. Still, Robyn advises job seekers with visible disabilities to be prepared to discuss their situation directly with interviewers. “Know what the essential job duties are and explain how you will perform them, with or without an accommodation,” she suggests.
29% of employees with a disability were denied a flexible work schedule when they asked for it, jumping to 38% for those with a nonvisible disability.
Also know the facts: Under the Americans with Disabilities Act, disabled job seekers must be equally considered so long as they can perform the essential job duties with “reasonable accommodations.” Know too that although accommodations are often perceived as expensive and difficult, the average cost is less than $500 per person, says Nadine Vogel, CEO of Springboard Consulting, which specializes in disability training and inclusion for large companies. Once they surmount hiring barriers, people with visible disabilities seem to fare very well on the job. In our survey, 81 percent report both that their work is rewarding and that their supervisor cares about helping them advance. What do they want improved? For one thing, travel assistance—30 percent say they have had such requests turned down, and 18 percent cite the inability to travel as a barrier to getting promoted. For another, more than half of workers with a disability say they’ve felt excluded from their company’s informal networks, and nearly a fifth say disability stereotypes still hinder possibilities for advancement.
What happens when others can’t see your disability? In our survey, women whose disabilities are hidden, like Stacia’s fibromyalgia and Leah’s Asperger’s, argue that they have a tougher time at work than people whose disabilities are overt. Little wonder, then, that they also report being less satisfied on the job, having greater difficulty balancing work and personal-life demands, and being less optimistic about their ability to advance at work. Part of the reason for this gap: Nearly a third of people with nonvisible disabilities who do not disclose them to their employers say it’s because they’re uncomfortable sharing that information with them. “There is definitely additional stigma facing women with hidden disabilities,” says Cokley. “We have these longtime biases about so-called women’s conditions as being not as valid.”
For instance, Stacia’s fibromyalgia is one in a cluster of chronic illnesses that disproportionately affect women. (Of the estimated 5 million Americans who have fibromyalgia, 80 to 90 percent are women.) This difficult-to-treat disorder primarily causes chronic muscle pain, fatigue, and body tenderness and tingling. To outward appearances, it can be confusing—is she really sick? “I think a lot of women are so afraid to be seen as shirking responsibility in any area of their life that they remain silent,” says Stacia, who lives with her family near Bakersfield, CA. “We worry so much about our commitment being questioned.” Rather than disclose her struggle with fibromyalgia, Stacia left teaching in 2010 and started a small skincare company before launching Handcrafted HoneyBee, which makes educational create your-own-skincare kits for girls. This allows her greater flexibility to cope with her body’s “unpredictable schedule.” She admits to it all being “a difficult tightrope for me to walk. Some days, I’m in the office with my team, the most driven CEO you’ve ever met. Other days, I’m limited to the work I can do from home on the couch.”
31% of women versus 18% of men with a disability have been told that a workplace accommodation isn’t necessary.
Like Stacia when she was a teacher, nearly one-fourth of survey participants did not ask for workplace accommodations because they didn’t want to draw attention to their disability. “The choice to disclose a disability in the workplace is personal and is often dependent on a person’s perception of whether the environment is inclusive,” notes PwC’s Allyn. “We all play a part in creating a culture of disability inclusion. Some of the simple actions each of us can take to help cultivate a culture of trust in our organizations include practicing disability inclusive language and considering accessibility of team communications, training, meetings and events so that all participants can participate fully. Plus, it’s critical that companies clearly communicate how to disclose, which is another common barrier to disclosure.”
The Mental Game
At work, perhaps the most complicated form of disability is a mental and/or cognitive impairment—the type people are least likely to disclose, according to our survey. “People are afraid of what they can’t see,” says Leah, who lives in New Jersey. She was formally diagnosed with Asperger’s syndrome, a disorder on the high-functioning end of the autism spectrum, a decade ago, but has struggled all her life in social situations. “It would be easier for me, I am sure, if my disability were visible and I needed easily tangible accommodations, such as a ramp or a disabled bathroom,” she asserts. The one time Leah did disclose her Asperger’s and ask for an accommodation, it didn’t go well. She had enrolled for continuing education at a local university and asked for a reserved front-row seat in the lecture hall. When the university refused to provide it, going to classes became an ordeal. “Seating is important,” she says, explaining that “as an Aspie” she already finds strangers unpredictable and a little scary. So if she’s behind rows of people, their random movements can be too distracting, while navigating into a crowd to choose a seat triggers panic. “I don’t like touching people I don’t know, and don’t like being touched by people I don’t know,” she explains. “So being made to climb over people already seated and sometimes accidentally stumbling onto them was awful for me.”
79% of people with a disability would leave or consider leaving their company for a comparable position at another company.
In our survey, we saw that people’s requests for workplace accommodations are more likely to be approved than not. But when they aren’t, it’s most often women with nonvisible disabilities who are told that their accommodations are “not necessary.” (Women with all types of disabilities were told their request was not necessary 31 percent of the time, while men were declined only 18 percent of the time.) The insidious tendency is to think, If we can’t see it, it must not be real, says Springboard Consulting’s Vogel.
In Differences, Strength
The key to making workplaces better for those with disabilities, suggests Vogel: Instead of seeing disability as limiting, embrace it as the reality of your workforce. View it as a valuable form of diversity, as Leah does. “I don’t see myself as disabled,” she says. “I see myself as differently abled than other people who don’t have Asperger’s syndrome.” Though she looked nothing like the company’s leggy models, Rebecca Cokley once excelled working for Victoria’s Secret. Armed with a reasonable accommodation—“$7 step stools from Walgreens; I think we bought five of them”—she joined the lingerie retailer as seasonal help and worked her way up to manager, running one of the most profitable stores in the chain. “I think my dwarfism is an asset. I’m memorable,” she says. “We hired all kinds of people. I’m convinced people felt comfortable in our stores because the stores reflected what society actually looks like.”
Leah, who currently runs a dog-training business, thrives in a stable, consistent environment where she’s allowed to hyperfocus. “I tend to accomplish a task or any kind of work more quickly than do most other people, as I’m not distracted socially,” she says. Along with her current work, this has paid off for her at former jobs as an evening shift proofreader for a law firm and clerk for a sole practitioner attorney. The critical piece is to observe employees’ strengths and to have candid conversations about their goals, says Indiana University’s Dr. Mank. “‘What do you like doing? Where do your talents and interests lie?’ This dialogue is ongoing for most of us as our career progresses, but people with disabilities are less often invited into these conversations.” And that’s everyone’s loss. Because, as Vogel puts it, “people with disabilities are innovators. They have to be. When they can’t do something the way everyone else does, they have to figure out another option.” Robyn agrees: “People with disabilities tend to be more creative, persistent and flexible. That’s what life has taught us to be.”
When companies push to be inclusive and accessible, everyone benefits.
Consider these accommodations:
UNIVERSAL DESIGN | Which is another way of saying, great design. Sidewalk curb cuts are an example. Though they were designed for people in wheelchairs, they’re now used by everyone: older people, parents pushing strollers, joggers, skateboarders. Apply universal design to your company website and intranet (think: video captioning and voice-activated functions) so everyone can access the same information.
TRAINING FOR ALL | Springboard Consulting offers disability training that focuses on both visible and nonvisible disabilities. For instance, for an amputee who has lost a right hand, do you shake hands with her left or with her prosthetic? Answer: the prosthetic, which serves as a hand. What do you do if you suspect someone has an auditory processing disorder? Answer: Write out a task description and have him review it before you meet.
FLEXIBILITY BUY-IN | Focus on results, not where or when people work. In our survey, more than three-quarters of people with disabilities ranked flexibility as important, and half of all people with nonvisible disabilities say it’s easier to manage when working from home.
TASK RETHINK | Ask: How can we arrive at necessary results but allow for customized paths? Stacia Guzzo, who has fibromyalgia, believes that if she’d asked herself that question in her prior career, the answer would have been relatively simple, no-cost adjustments—scheduling her classes with a midday break, swapping out hall monitoring for seated tasks—that could have allowed her to continue teaching. “You’re not asking for something extra,” asserts Rebecca Cokley of the National Council on Disability, who is a little person. “You’re asking for the right to be able to do your job.”