As a financial podcast host in constant pursuit of the next interesting person to interview, I was drawn to bestselling author and professor Emily Rapp Black and her latest book, Frida Kahlo and My Left Leg — not only to learn about her connection to the famed Mexican artist who, like Rapp Black, lived with an amputated leg, but to understand the author’s personal money story.
When I asked Rapp Black if she’d be willing to discuss her personal money experience she didn’t hesitate: “I’ve waited a million years for someone to ask me that question,” she said.
In our open and wide-ranging conversation, Rapp Black shared about how she has been occasionally disrespected at work by coworkers, her fear of not qualifying for health insurance back when it was lawful to shut people out for having a “pre-existing condition,” and the thousands of dollars she spends out-of-pocket every year to tend to her prosthetic leg. “To live life in a different body…there is this additional struggle,” says Rapp Black. “A lot of it is financial, a lot of it is emotional, a lot of it is societal, because we have lived in a very ableist culture.”
One in four U.S.? adults is living with some kind of disability that impacts major life activities, according to the U.S. Centers for Disease Control and Prevention. And per 2013 data from the U.S. Census Bureau, 25% of those individuals with a severe disability between ages 18 to 64 are living in poverty, more than twice the rate of those without a disability.
In this installment of Closing the Gap, we’ll dive into some of the financial challenges created by a system that discriminates against people with mental or physical disabilities — and offer up some ideas for a bolder, more inclusive future.
Stopping the Stigma
Eliminating the societal stigma associated with being disabled is a basic first step toward more equality, including financial equality, says Rapp Black. “People say, ‘Oh! Having a disability is an absolute tragedy.’ That’s just not true. It’s certainly an identity-shifting moment and it’s not easy, but it’s also not tragic,” she says. A key to changing that perception, she suggests, might require visualizing yourself as disabled. This exercise isn’t meant to be a fear tactic, but rather a way to shift toward valuing all bodies—and confront this probability in our own lives. More than one in four people who are 20 years old today will become disabled before retiring, according to the U.S. Social Security Administration.
In recent years, as companies prioritize diversity, equity, and inclusion initiatives and programs, advocates are highlighting the fact that inclusion also means welcoming those with disabilities.
“Everyone will have a disability if they live long enough. You’re either a decade or a random disease or an accident away from having one,” says Rapp Black. “People say to me, ‘I couldn’t do what you do.’ It’s like, “Yeah, you could because you have to…Just because a body uses a wheelchair or uses a seeing eye dog doesn’t make that person less valuable or less capable.”
Aiming for Greater Expectations for Kids
Even before a disabled person is ready to enter the workforce and earn money, expectations of what he or she is capable of doing are often underestimated from an early age, says Mia Ives-Rublee, director for the Disability Justice Initiative at the Center for American Progress.
“The medical profession so often prescribes what life is going to look like for a disabled child and it is often limiting, that they aren’t going to survive to adulthood or be independent,” she says. While that might be the case for a small subset of individuals, placing limits on a child’s potential can prevent families from thinking long-term and creating a plan for their children to find work and eventually become independent.
“We should always be wanting more for the disability community,” says Ives-Rublee, who was born with osteogenesis imperfecta (also known as brittle bone disease). She credits her parents for helping her realize her potential and navigate the various programs that would allow her to become financially independent.
Increasing Workplace Support
A similarly narrow mindset can — and often does — show up in the workplace. In one 2018 study, researchers found mock job applicants received 26% fewer “expressions of employer interest” when they disclosed a disability, compared to applicants without disabilities. This bias still occurs despite the Americans with Disabilities Act, passed 30 years ago this July, which is supposed to offer protections and ensure equal opportunity for people with disabilities.
In recent years, as companies prioritize diversity, equity, and inclusion initiatives and programs, advocates are highlighting the fact that inclusion also means welcoming those with disabilities. “If you are actually really inclusive, then show representation within your organization, have an accessible website, have representation on your website, have specific things in your employee handbook that talk about accommodations,” says Ives-Rublee, who includes more key practices in her Disability Inclusion Toolkit, created with the Ford Foundation.
A Push for Fair Wages
While many people are aware of the current debate over raising the federal minimum wage to $15 an hour, there is a lesser-known century-old regulation — section 14(c) of the Fair Labor Standards Act — which grants businesses the right to pay some people with disabilities far below the federal minimum wage of $7.25 an hour.
The wages are associated with work in community rehabilitation programs or sheltered workshops at workplaces such as Goodwill Industries, a leading employer of people with disabilities. In recent years, though, the non-profit says it’s reduced the use of its authorized “special minimum wage certificate,” amidst ongoing backlash from the media and disability rights activists.
The U.S. Commission on Civil Rights, an independent federal agency, released a report in 2020 proclaiming that the rule effectively keeps the disabled in poverty and called for active steps to repeal it. While subminimum wages have been banned in several states, including Alaska, Vermont and Texas, U.S. President Joe Biden has pledged to phase out the rule entirely.
Modernizing and Expanding Social Benefits
There are two main federal assistance programs designed to support people with disabilities: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). The SSDI program pays benefits if you find yourself unable to work and you have, up until then, worked long enough and paid Social Security taxes on your income, while the Supplemental Security Income (SSI) program extends disability benefits to those with limited income and resources.
The benefits are not enough to cover basic expenses like rent, health care, and food. The maximum SSI benefit, for example, is $794 per month, which is below the federal poverty level and less than the average cost of rent nationwide.
Also, to qualify for SSI, individuals must pass a “needs test,” and show that they have no more than $2,000 in assets (the limit is $3,000 for couples), often making it impossible for some people to qualify. Beneficiaries also need to continue to live below this asset limit in order to remain eligible for the benefits.
There is a recent update to this rule, however: If individuals qualify for the SSI programs, they now have the option in most states to open an ABLE Account, a tax-advantaged savings account allowing individuals living with disabilities and their families to save up to $15,000 per year without hurting their eligibility for benefits. But there is one major restriction: to be eligible, your disability must have begun before age 26.
The Need for More Advocacy
Qualifying for Social Security benefits when disabled is difficult for many of the above reasons, but there is also an overall lack of awareness about these programs, and a system that some people might find challenging to navigate. A 2015 University of Michigan study found that just over 50% of individuals who would most likely qualify for SSI were actually enrolled and receiving benefits.
Statewide disability rights organizations are available in every state and work to help improve a person’s chances of receiving benefits. Teaming up with an advocate at a local or statewide disability rights organization can help people gain access to services like job training, college tuition assistance, and pay for internships. “I often tell individuals, you need to find an advocate to get through these services,” says Ives-Rublee, who served as a vocational counselor for six years in her state of North Carolina.
This is particularly important for people of color because of colorism and not being “allowed to be proactive,” says Ives-Rublee, who is Korean-American. You can be penalized by individual counselors if you are seen as a belligerent client, she says. If your counselor is not advocating for you, then ask to speak with a manager to review your case, she advises. If you’re still having issues or are concerned that racism, ableism, or sexism is a factor, talk to your local or statewide disability rights organization.
Enhanced disability rights would help end a poverty trap for millions of Americans. In the meantime, we can each make an individual effort by destigmatizing disabilities, pushing for more workplace inclusion, modernizing and providing easier access to benefits, and serving as advocates for our friends and family that need help navigating systems. And don’t forget to vote — the push for political change starts with our own personal choices.