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In my previous post, I included a link to an article than ran in the Times Sunday Business section. I am reprinting the article here, for those who didn't see it. The story was very well read. It stayed on the most-emailed list for most of a week and I received a lot of personal mail. But I realize not everyone gets to the inside pages of a Sunday New York Times section, so here's the article in full.
In the past few weeks I've been to a fascinating conference on looping and have researched an exciting new protocol for treating tinnitus. I plan to write about both here very soon, but in the meantime, I don't want my silence to go on for too long. So if you missed the Times story, here it is.
The New York Times, September 21, 2013
Quandary of Hidden Disabilities: Conceal or Reveal?
By KATHERINE BOUTON
A YOUNG woman with hearing loss wrote to me recently about being interviewed for a senior position in a major library system. She was well qualified for the job, and as her interviews progressed through the day, she sensed that she was about to be offered the job.
Then the top executives invited her to continue the discussion over drinks. The bar was noisy and she couldn’t keep up with the conversation. She didn’t get the job.
The woman, who asked me not to use her name, is among those whom the Americans With Disabilities Act can have a hard time protecting: people with hidden disabilities.
What should she have done? During the interview process she might have disclosed her hearing loss in a way that showed how effectively and creatively she compensated for it. When the drinks suggestion was made, she might have said: “I’d prefer we met in a quiet place so I could respond more easily. Would that be O.K.?”
But the woman’s choice not to disclose her disability was understandable. In fact, Joyce Bender, who owns a search firm in Pittsburgh that helps place people with disabilities, says that revealing a disability in an interview should be avoided if possible. And it should not be mentioned on a résumé, she says, as doing so may mean never reaching the interview stage.
Ms. Bender herself has epilepsy, a factor in her decision to focus the work of Bender Consulting Services on people with disabilities. “People with epilepsy have been viewed as mentally insane, degenerate, demonic or intellectually diminished,” she said. “Today the stigma for people with epilepsy is that you are strange, dangerous, weird and someone to avoid.”
An employee is not required to disclose a disability after being hired, but may choose to do so. Someone with epilepsy may want to ensure that the employer will know how to deal with a seizure. A diabetic might need to be away from work for insulin shots. Someone with mental illness may need a flexible schedule to allow for psychiatrist visits. A recovering alcoholic or drug abuser might need time off to meet with a substance abuse support group
But it’s a hard decision to make: If you announce your condition, you risk being stigmatized; if you keep it a secret, you risk poor performance reviews or even being fired.
AS someone who suffers from hearing loss, I understand this quandary all too well. When I was an editor at The New York Times, I was hesitant to discuss my condition. I told a few close colleagues about my disability, but I never explained how serious it was. Nor did I admit to myself how much it affected me professionally.
Former colleagues have since told me that they sometimes thought I was aloof, or bored, or maybe burned out. The fault was mine, in not disclosing the disability and asking for accommodations. I could have asked for a captioned phone, for instance, which would have made my job much easier and reduced a lot of the stress. I could have used a hearing assistive device, a small FM receiver, to pick up voices at staff meetings.
So why didn’t I say anything? I feared being perceived as old. For nearly three decades I tried to fake it, as my hearing loss worsened to the extent that I could barely manage in the workplace even with a hearing aid and a cochlear implant.
My experience, and that of others, shows that invisible disabilities in the workplace may lead managers and colleagues to view employees as difficult, lazy or not team players.
Most companies are in compliance with the Americans With Disabilities Act, and many seek out employees with disabilities. But there are subtler, gray areas of discrimination, usually unintentional. These can start with the application process.
Some big retail companies use prescreening tests with job applications that can exclude certain employees, said Jan Johnston-Tyler, founder and chief executive officer of EvoLibri, a company in Santa Clara, Calif., whose services include job placement for people with disabilities.
One of Ms. Johnston-Tyler’s clients, a 25-year-old with Asperger’s syndrome, applied for a position at Subway. While most of the online application was routine, the last step was a multiple choice questionnaire. One of the 60 questions was, “Sometimes I have a hard time figuring out how I am supposed to behave around others.”
Most of us would check off the “disagree” option, but as Ms. Johnston-Tyler pointed out, many people with Asperger’s “are generally honest to a fault.” She contacted Subway’s corporate parent and was told that her client could fill out a different application without social suitability questions.
The interview process can be another minefield, as the woman who wrote to me about the library position found. And once people with hidden disabilities start their jobs, they face more risks.
Ms. Johnston-Tyler sees a lot of inadvertent discrimination. She told me about a client with Asperger’s who was working for a community college as an accountant and was having a very difficult time interacting with others because of his poor social skills and boundaries. He was lonely and wanted social time with others, and got in trouble for asking too many questions.
She also had a client who lost his job as a line cook because he could not keep up with the food orders being called out. He had a condition called central auditory processing disorder, “which made it virtually impossible for him to interpret the orders when he was not looking at the waiter’s face — he was facing the stove,” she said. “We helped him get a job in catering, where he could read the orders needed.”
About half of Ms. Johnston-Tyler’s clients are referred by mental health practitioners. People with mental illness have a particularly hard time finding and keeping jobs, in part because of isolated cases of violence that lead to negative — and out of proportion — publicity about mental illness, Ms. Johnston-Tyler says. For this reason, employees rarely disclose a psychiatric disability, either before or after they are hired. This leaves them open to misunderstanding.
Ms. Johnston-Tyler recalled placing a bipolar client in an internship for dog grooming. Her internship was terminated because the client “didn’t seem that interested” in the training, Ms. Johnston-Tyler said, “when in fact, it was her mood disorder that made her appear apathetic.”
Hidden disabilities can come into play with veterans. Ms. Bender says: “I hear so many employers say, ‘I would love to hire a veteran with a disability; they will get top priority when I hire new associates.’ ”
What they really mean, she says, is, “Send me a veteran with a visible disability,” and yet “many servicemen and women return from the wars in Iraq and Afghanistan with traumatic brain injury or post-traumatic stress disorder.” Employers tell her, “I don’t know how to accommodate something like PTSD; the veteran may not be able to handle my stressful work environment.” Very few companies, Ms. Bender points out, have a stress level like the one that caused the PTSD.
Ms. Johnston-Tyler estimates that 75 percent of the employees she places choose not to disclose their disabilities. Even after placement, both her company and Ms. Bender’s continue to be involved with the applicant.
Ms. Johnston-Tyler does advise disclosing a disability “if an employee receives a very poor review, or is placed on a performance improvement plan.” It may not help, but “if nothing else, this slows the termination process down a bit and allows us to see if we can resolve the situation for everyone.”
Why don’t more employees open up about their disabilities? As Ms. Johnston-Tyler put it: “Think about someone going on public record that they were gay in the ’70s or transgender in the ’90s, and you pretty much have it. Society is simply not there yet for this to be a safe conversation for most people.”
TO help employers avoid inadvertent discrimination, Ms. Johnston-Tyler wrote a paper in 2007 that offers sample human resource training programs, and contains references to others. She explains the employer’s rights as well as the employee’s. For example, if an employee comes to a manager with a disability that cannot be seen and asks for accommodation, it’s fair for the employer to ask for verification. In an interview, Ms. Johnston-Tyler added that it’s also important for the employer to communicate to all employees the general information that workers may need to take time off for medical care, without naming employees.
But therein lies another problem. As Lynne Soraya, the pseudonym of a blogger who writes about her Asperger’s, puts it: “In today’s world, we require people to be labeled in order to give them help and coaching in the areas they need.” Even though disclosing her condition in her personal life has been a “godsend,” she writes, “in the area of work, I still have grave misgivings.” Many people with hidden disabilities share those doubts
John Waldo is the founder, advocacy director and counsel to the nonprofit Washington State Communication Access Project, which aims to reduce barriers that prevent people with hearing loss from participating in public life. He sees a lot of unintentional discrimination.
Mr. Waldo, like many I talked to in the field of employment practices, is willing to give employers a break.
“When Congress passed the A.D.A., it recognized the important and fundamental reality that discrimination is seldom intended,” he said in a speech recently. “Rather, discrimination against the disabled is most often an unintended effect of acts or omissions undertaken without considering the impact on people with disabilities. Put bluntly, the problem is not so much that people are mean, but rather, that people are clueless.”
Katherine Bouton is the author of “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You.”
