‘Millions Like Me’
Consultant Advocates for Better Accessibility
More than 60 million American adults live with a disability. Many struggle with inadequate accessibility tools and accommodations. Some challenges are common, others less obvious.
Dr. Matthew Weed counsels companies and agencies on ways to improve physical and virtual accessibility for people living with mobility, cognitive, vision, hearing and other impairments. Weed speaks from personal experience: he is totally blind and has brittle type-1 diabetes.
“This talk is about the tens of millions of Americans with chronic health challenges, all of whom can benefit from greater understanding on the part of health professionals and scientists of the challenges we face in managing our health, whether in the clinic, the research laboratory or at home and work,” said Weed. He spoke at the recent inaugural talk in the NIH Diversity, Equity, Inclusion and Accessibility (DEIA) Lecture Series, sponsored by the Clinical Center, National Eye Institute (NEI) and the Office of Intramural Research (OIR).
Weed, who holds a doctorate in genetics from Yale and master’s degrees from Harvard and Princeton, began losing sight as a baby and became totally blind at age 8. In childhood, he suffered seizures and multiple comas caused by out-of-control blood sugar from diabetes.
Photo: Mikhailov Studio/Shutterstock
“In the early 1970s, we had no at-home blood glucose monitoring and didn’t [yet] have recombinant insulin,” he recounted. Doctors told his family he wouldn’t survive to adulthood. Today, he’s still going strong at 53.
Weed began advising NIH in 1994 on improving access to facilities and databases. More recently, he has worked with institutes and centers across the agency to bolster website accessibility.
Greater accessibility helps all people with disabilities participate more fully in society. But disparities in the community, in particular, need greater attention. Women, people who are socio-economically disadvantaged and certain ethnic groups are more likely to report disability.
“These folks are the ones least likely to appear in their appropriate numbers in clinical trials,” said Weed, “so we may be misspending a lot of money on trials because we are not matching them to people who need them the most.”
There are other blatant gaps in research.
Scientists with a long-term disability earn far less than the median scientist, noted Weed. NIH data from 2022 also showed principal investigators with a self-reported disability on their application had a decreased grant success rate.
“Yet these are the people doing research on the issues we have to deal with and [that] NIH is chartered to reduce the risk and impact of going forward,” Weed said.
Doctors, Take Note
“Millions like me have complex medical routines that health professionals and scientists must be aware of in prescribing medications in clinic or for use at home,” Weed said.
For example, many devices are not accessible. Some require tiny movements, such as getting a small drop of blood onto a test strip.
“There’s no way for me to do that,” Weed pointed out. And most glucose monitors don’t speak, so even if he somehow managed to get the droplet onto the strip, he’d struggle to get a reading.
“[Doctors] and patients need to work together to find creative solutions to these problems—solutions that can literally be the difference between life and death or at least [alleviate] great suffering for your patients and trial subjects,” he said.
Another challenge is differentiating among identically shaped medicine bottles. Blind patients need Braille labels, which many pharmacies aren’t equipped to produce. Weed uses tape on preloaded insulin pens, but the caps can inadvertently get switched, resulting in medication or dosing errors.
“Any story I tell is likely repeated many times in many different ways across our nation,” he said.
Also keep in mind, he said, “The choices health professionals make and attitudes they carry can have huge impacts on patients’ outcomes and compliance.”
Be respectful, he pleaded. Don’t yell or patronize. Data may point to a better protocol but it might not be practical for that patient. He urges doctors to reduce barriers by seeing patients as people and keeping an open mind.
Tech Challenges
It’s tough for a blind person to learn how to use a computer in the first place. Weed recounted a friend using cardboard cut-outs to explain the concepts of Windows and icons.
Navigating online presents its own challenges. Many websites and apps are not accessible for screen readers. And even screen readers are daunting. Weed played a clip of a common reader spitting out words so fast, the audio sounded garbled.
Almost all of the top one million high-trafficked web pages had at least one accessibility hurdle, noted Weed. And, he said, nearly half of federal government websites failed the accessibility test on at least one of their three most popular pages.
He also shared examples of pitfalls at NIH. In one institute’s strategic plan, for instance, line numbers made the draft more digestible for the sighted but impeded screen readers from skimming it. There also wasn’t an accessible tool for Weed to insert his feedback.
Another NIH institute uploaded a report that was a “non-navigable block PDF.” The institute initially responded to Weed’s concerns by citing budget and staffing constraints.
“If you create a major report and are having trouble financing full navigability,” Weed said, “please seek help from your agency in financing to get it to the point where it’s usable.”
Another tip: In out-of-office autoresponder messages, include the email or phone number, not just the name, of your backup person. “A lack of access to information for someone who can’t see is also a lack of access, in this case, for any constituent of federal resources.”
Training, Reality Differences
Weed argued there is a disconnect between the realities many patients face and the training health professionals and scientists receive to alleviate them.
“This is a cultural problem tied to training,” Weed said. He encouraged NIH and other federal agencies to become more engaged in how scientists and health professionals are trained so tools like screen readers and other assistive technologies are made known and available to those who need them. Such a change, he said, could greatly improve outcomes for millions of people.
Getting Around
People with disabilities need physical spaces to be accessible both indoors and outside so they can get to work, access care and travel everywhere else they need to go. Weed’s talk specified compliance measurements for ramps and landings, parking lots, doors and auto-door openers, hallways, elevators and exam rooms.
He concludes, “The more we can find ways to reduce risk, grow our knowledge, improve accessibility of both [information] and places and improve empathy, the less people who already face barriers will have to climb health care and regular-life mountains while working to recover, maintain and hopefully improve their health and wellbeing.”
Learn more about Weed: https://www.drmatthewweed.com/.