What a ‘Human-Centered’ Approach Can Do for Workers With Disabilities
5 min readIn the summer of 2015, Katherine Macfarlane was preparing to teach at the University of Idaho’s law school. It was her first teaching job on a tenure track, and she wanted to make sure she had everything she needed. So she submitted a request for a keyboard tray and a few other office items.
Ms. Macfarlane gave the school’s human resources department a note that her doctor had written about four years earlier, describing her decades-long history with rheumatoid arthritis and recommending ergonomic office equipment. She also shared a radiology report that detailed joint damage and bone spurs.
It wasn’t enough: Her request was denied because the documents were deemed outdated, she recalled.
Instead, the department wanted her to provide a new doctor’s note — but the closest rheumatologist was about an hour and a half away, in Spokane, Wash. And it could take months before a specialist became available.
“I was panicking,” Ms. Macfarlane, 43, said. “So I pleaded with a rheumatologist I’d seen in the past and desperately asked for a letter.”
In August, her request was approved.
The lack of an item like a keyboard tray may seem like a minor inconvenience to some, but not to Ms. Macfarlane and millions of other people living with disabilities. The Americans With Disabilities Act, which became law in 1990, bans discrimination against workers with disabilities and requires employers to provide reasonable accommodations that don’t pose an “undue hardship” — a tricky term.
In reality, experts say, the process for obtaining accommodations at work is often filled with countless obstacles that dissuade disabled people from requesting them in the first place.
“There’s a huge gap between what the law was intended to do and what the experience of employees with disabilities really are,” said Ms. Macfarlane, who is the incoming director of the disability law and policy program at Syracuse University College of Law.
Experts argue that in order to be more accommodating to workers with disabilities, employers need to lift antiquated barriers such as medical documentation requirements and long wait times. Instead, employers should establish policies that are accessible to as many people as possible while being flexible and open to improvements.
The goal is for fewer people to have experiences like Ms. Macfarlane’s, and for employers to feel empowered, rather than intimidated, in their efforts to better accommodate workers.
Less Paperwork, More Dialogue
Until this month, Amy Gong, 32, worked at Beaming Health, a company for children with disabilities and their families. (Her department was recently eliminated.) She has often successfully requested that her teams adopt tools such as noise-canceling headphones and note-taking plug-ins, without mentioning that she needs them for her autism and attention-deficit hyperactivity disorder.
“I always try to make it a fun conversation for everyone, like, ‘I heard about this great thing or used it in a past job, maybe something the whole company can use,’” said Ms. Gong, who lives in a suburb near Los Angeles.
Providing doctors’ notes can be challenging for those who have just relocated, whose insurance may not have kicked in yet or who have not accrued enough paid time off.
“Employees are feeling hesitant and a sense of distrust with their employers because the process feels very clunky and very unsafe and insecure,” said Hannah Olson, 27, a co-founder and the chief executive of Disclo, a company that produces software designed to help people request accommodations without disclosing their disabilities to employers.
“The only reason there are documentation standards is because there’s this suspicion that disabled people are lying,” said Ms. Macfarlane, adding that disability laws do not require documentation.
Even if employers insist on documentation, they can simplify the process by accepting a variety of evidence, including older medical records, and requesting paperwork only once.
“Sometimes people need accommodations, or they don’t, or maybe they do, but need small adjustments,” said Beth Wiesendanger, 34, a double amputee and a senior manager of diversity, equity, inclusion and accessibility at a technology company in New York. “Every conversation shouldn’t require documentation to be resubmitted all over again.”
Employers should also be more involved in the “interactive process,” a term used by the Equal Employment Opportunity Commission, during which both sides work together to determine what accommodations are most appropriate and helpful. Periodic check-ins are crucial.
‘Accessibility Is a Practice’
But what happens after a worker requests an accommodation? It depends on the employer.
Despite legal obligations, employers are often hesitant to beef up their accommodations because of misconceptions that they are expensive and rarely needed. The median cost of an accommodation with a one-time expense is around $300, according to a recent survey by the Job Accommodation Network, and about half of employers reported that the accommodations they had established cost nothing. (Many accommodations, like remote work, also benefit nondisabled employees, including parents.)
Underlining the problem, many organizations do not have a standardized accommodation process or a centralized budget for it; often, they wait to address accessibility until an employee makes a request, said Shelby Seier, the founder of All Kinds, a consulting firm that evaluates companies for accessibility.
“We often find that people come to us reactively rather than proactively, and they are scrambling to accommodate or figure out their legal obligations, or to rapidly adapt to an employee or group of employees that have identified access needs,” said Ms. Seier, 31, who has dysautonomia, a dysfunction of the autonomic nervous system.
There may be more disabled workers than employers realize. A median rate of 4.6 percent of employees in the United States are willing to identify that they have disabilities to their employers, according to the latest Disability Equality Index report by Disability:IN, a nonprofit advocating disability inclusion in business. But that is almost certainly a significant undercount of the total number: In a global survey of nearly 28,000 workers published in May by Boston Consulting Group, around 25 percent of employees reported having a disability or health condition, whether visible or invisible. People with conditions that aren’t immediately apparent, like chronic migraines or dyslexia, may find it particularly challenging to request accommodations out of fear of not being believed.
Another reason for the gap is reluctance to share deeply personal medical information with managers. Some employees who might otherwise need accommodations decide to avoid a formal process altogether.
“It’s just a matter of whether they feel safe or not safe to disclose to you,” Ms. Wiesendanger said.
Companies tend to focus on compliance and risk mitigation, she noted, rather than a “more human-centered approach to accessibility.” To foster a workplace culture that values disabled workers, employers can adopt practices such as hosting regular implicit-bias trainings, having a self-identification process without invasive questions and starting disability employee resource groups.
“Have an internal affinity group where you have individuals with disabilities talking with each other,” said Yvette Pegues, 45, the chief diversity officer of Your Invisible Disability Group and a board member for the Arc, a disability advocacy organization.
Other positive practices include encouraging workers to ask for what they need, providing easy-to-follow guides on how to request accommodations and constantly re-evaluating policies.
“Accessibility is a practice, not a destination,” Ms. Seier said.
Wendy Lu is a senior staff editor at The Times and a board member of the National Center on Disability and Journalism. She speaks to groups around the world about disability representation in the media. More about Wendy Lu
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