WASHINGTON, DC: Maria Town, President and CEO, AAPD, speaks at a welcome back Congress rally. She ... [+]
In a big win for students, The Ford Foundation’s U.S. Disability Policy portfolio announced a $1 million grant to the American Association of People with Disabilities (AAPD). Subgrants (yet to be named) will help disabled students and workers on campus to advocate for their rights and squelch the prejudice many say they encounter when asking for equal rights to both remote and on campus education. In a joint statement released by both organizations, leaders pointed out that the pandemic is replete with examples of disabled workers and students facing “immense discrimination and impossible choices”.
The grant gets to the heart of the issue so few know about: Covid-19 disproportionally leads to negative health outcomes among disabled people, who make up 22% of all Americans. While many Americans celebrate the return to work and school and watch as pandemic restrictions ease across the country, disabled students and workers are worried that Higher Education has reached a low point when it comes to their protecting their health.
The $1 million grant aligns with both organizations’ focus on disability rights, youth advocacy and social justice. It highlights the importance of taking positive actions led by peers and disability community for the disabled community, whether they be students, staff or faculty. They will not be the first to support these efforts, but the partnership of these two high-profile organizations is exciting because it brings much-needed awareness to the challenges that plague post-secondary education.
“One million dollars goes a long way in creating peer-based programs, which data already exists to show are more successful than professionals reaching out to students directly,” says Allilsa Fernandez, a mental health and disability advocate, aspiring lawyer, peer specialist, who is part of NCCSD’s program DREAM, and on the board of the International Student Peer Support Program in the United States.
I asked Fernandez and others with lived experience what they see as the most effective strategies to help disabled students. I also queried professors, researchers, graduates with a diagnosis of a serious mental illness and college disability departments to share their advice. Many offered wisdom and resources that can benefit all businesses, not only Higher Education. Here's what they said:
Don’t Reinvent the Resource Wheel
Many people I spoke with cautioned that if you are not closely tied to the issue, disability accommodations can seem like a foreign land full of legalese and paperwork. (Imagine, on top of being a first year student or faculty member, you also need to learn a new language called post-secondary accommodations.) Even the terms you may be familiar with from K-12 settings don’t apply. The main difference: Postsecondary accommodations are designed for access, not for success. A good place to start is the National Center for College Students with Disabilities (NCCSD), which is based at the Association on Higher Education And Disability (AHEAD). They offer comprehensive resources online for students of all backgrounds and levels of education (from incoming freshman to graduate students). NCCSD’s database for students and faculty, funded by the federal government since 2015, are easy to understand and available in a variety of formats. Academic scholars can find information on how to navigate academia with a disability by joining groups of scholarly communities that offer practical Google document guides on inclusivity. Some are more niche than others, but if that one doesn’t suit you there are plenty of disability hashtags on Twitter to follow.
It’s Complicated
While the topic of masking, ventilation, masks and remote learning are familiar, they are also fraught with disagreement. The pandemic is far from winding down—and the fight over Covid protection protocols is just winding up, which makes the Ford Foundation grant incredibly timely. Advocacy and understanding of everyone’s needs is complicated. Health protocols designed to ensure the safety of disabled people most often keep everyone safe. But disability is not a monolith. So the masks that one person wears and the distance at which they stand may be correct for someone who is immune compromised, but be incredibly difficult for someone who is reads lips or has trouble with language processing. These debates are raging in among public health experts and in among people with lived experience and will continue to do so at this fall’s American Public Health Association meeting in Boston.
Negativity and bias run rampant often because that’s what the focus of most school administrations has been on—measuring grievances. When the NCCSD surveyed colleges and universities about the top seven policies and procedures they were aware of on campus, their findings shoed that 95% of participants could identify formal grievance policies and procedures with complaints about disability accessibility. Only 43% could identify faculty diversity hiring initiatives or efforts to recruit and retain faculty with disabilities. The need for positive disabled academic role models is huge, but incredibly difficult to find. Out of fear of repercussions and bias, many academics stay quiet about their disability, whether it’s a cancer diagnosis or problems related to Long Covid.
Connect and Collaborate For Greater Reach
Research on disability peer support is one of those sweet spots—there are positive learnings in almost every research study you turn to. “Research shows students with disabilities are the ideal liaison between students and professionals, sharing information and resources and supporting training, says Fernandez. By training student-led organizations to help students advocate for themselves and create disability conferences, we can connect students across cities states and nationwide.” But that doesn’t exclude professionals, who also need training in listening to student’s experiences with disabilities. Fernandez said that most often policy fails when it is created without those who are impacted the most, people with lived experience or when informed policy is not shared across networks. Money spent creating disability conferences that connects students across cities, states and nationwide would fill a huge resources gap. “One of the biggest issues with universities is that they know most students with disabilities are a small bunch on campus and hold less power,” says Fernandez. “If a network were created, imagine the changes that would actually take place.
Clarify Covid Risks For Disabled People
Covid-19 disproportionality leads to negative health outcomes among people with disabilities on campus, including students, faculty, and staff. Research shows that those effects are not only physical. There are unique stressors and challenges that could worsen mental health for people with disabilities during the COVID-19 crisis, according to the American Psychological Association website. The U.S. now has a strategy for ending these health disparities, but it may not be enough.
Often these disabilities are invisible and may not be at the forefront of the minds creating safety policies for higher education, despite the higher risk among this group, according to Karen L. Fortuna, PhD LICSW, assistant professor of psychology at Geisel School of Medicine at Dartmouth. She does not mince words when it comes to Covid protocols. “Do I go to school or work and risk getting sick and even dying?”—those are the kinds of questions Dr. Fortuna says are on people’s minds.
Studies by Dr. Fortuna and her colleagues show that peer support can span multiple arenas and support people's mental health, physical health, and social health. “Digital peer support for the disability community being left behind in higher education policies can support advocacy efforts to get their voice heard on campus,” says Dr. Fortuna. “In order to challenge the status quo on living with Covid, disability students, faculty and staff, whose numbers may be small need to have funding that will help to amplify their voices.
Be Realistic But Relentless
Researchers tracking prejudice in a variety of groups found that “Sexuality biases dropped 64% over 14 years, but it hasn't changed at all for disability, age, or body weight bias,” according to Phys.org. The tracking of implicit bias at the Department of Psychology at Harvard found only a 3% change in implicit disability bias. Using their forecasting, neutralizing bias might take mean more than 200 years. That’s stunning. To me, it says Americans need to spend a lot more time opening their minds than they do opening their wallets. Of course, sometimes the two go hand in hand: To open minds, you need to educate people on the prejudices they can’t see or have compartmentalized to think are other people’s problems, not their own.
Inclusion, when it is most effective, requires action. What gives me hope—even more hope that $1 million grant from the Ford Foundation? Seeing a leader who also happens to be disabled, advocate on social media for the community.
Erin C. Sanders is a disabled mother, wife, nurse practitioner and clinical scientist at MIT who wrote on Twitter this week exactly what I was thinking, in words more powerful than I had managed in my frustration over being at high risk for Covid-19: “Those who are resistant to providing reasonable accommodations (like virtual attendance) because they are different from what you’re used to, require creativity and are sometimes expensive. Welcome to being disabled - every aspect of our lives is this.”She goes on to say it is the bare minimum that other able-bodied people can do. If you want to hear another take on disability in Higher Ed, I’ll offer yet another instance of a student with lived experience telling it like it is. This one comes from disabled scientist Krystal Vasquez, who has a PhD in atmospheric chemistry and wrote about being excluded from her lab in Chemistry World. The lack of disabled faculty is a troubling one that the AAPD will tackle through their new funding. The White House has plans to protect high-risk communities on campus during the fall. The more voices—at every level of Higher Ed, in government and public health organizations, the faster future students will see change on campus as Americans learn to live with Covid.
