I have no idea how much I weigh.
That’s because I’ve never come across a wheelchair-accessible scale. The last time I remember stepping on a scale was as a high school student at a boarding school for disabled kids run by the state of Illinois. The school had a big platform-like scale embedded in the ground, and I rolled my wheelchair onto it. The scale weighed me and my wheelchair, then weighed the wheelchair without me, and calculated my weight. The school may have been a stifling, oppressive dumping ground of low expectations, but at least I knew what I weighed.
I graduated from there 50 years ago. I think my weight has remained stable at around 170 pounds since then. This is based on a ritual I perform twice a year: In the spring, I take my spring/summer clothes out of my closet and put away my fall/winter clothes. In the fall, I do the reverse every year. If the clothes I take out are tighter than they were when I last wore them a few months ago, I joke that they must have shrunk in the closet. Perhaps there is something about the air conditions in the closet that causes the clothes to shrink.
Most of my clothes are still wearable. I seem to be managing on my own.
Apparently I’m not the only person with a disability who doesn’t know how much I weigh. In January, the U.S. Department of Justice (DOJ) published a Notice of Proposed Rulemaking in the Federal Register under Title 2 of the Americans with Disabilities Act (ADA) to make medical diagnostic equipment more accessible to people with disabilities. This includes things like examination tables, weighing scales, dental chairs, x-ray machines, mammography machines, and more.
In a statement announcing the action, the Justice Department said, “The Department has received numerous complaints from people with disabilities that health care providers are failing to provide basic and important medical care, for example by failing to accurately weigh them when administering anesthesia before surgery.”
Last September, the U.S. Department of Health and Human Services (HHS) released a proposed rule titled “Prohibition of Discrimination on the Basis of Disability in Any Program or Activity Receiving Federal Financial Assistance.” It was intended to update a 1977 rule that specified accessibility obligations under Section 504 of the Rehabilitation Act of 1973. Section 504 states that individuals with disabilities may not be discriminated against on the basis of disability in any program or activity receiving federal financial assistance, which covers almost all health care facilities. A lot has happened since 1977, long before the ADA became law in 1990, and so the rule needed to be updated.
Announcing the measures, Health and Human Services Secretary Xavier Becerra said, “Meeting basic health care needs remains difficult for many Americans. Some people with disabilities must drive hours to get a mammogram or access the benefits and advancements our health care system provides.”
The proposed changes state that “Although Section 504 has prohibited discrimination in any program or activity receiving Federal financial assistance since its enactment, discrimination remains at the root of health disparities faced by people with disabilities. People with disabilities are significantly more likely than people without disabilities to have their medical, dental, and prescription needs unmet.”
. . . People with disabilities in the United States have a shorter life expectancy than people without disabilities and are three times more likely to have heart disease, stroke, diabetes, and cancer than adults without disabilities. People with certain types of severe mental illness have a significantly lower life expectancy than the general population, and people with mental illness are at higher risk of physical illness and are less likely to receive appropriate medical care. Pregnant women with disabilities receive lower quality obstetric care, have higher rates of pregnancy- and childbirth-related complications, and are 11 times more likely to experience maternal mortality than people without disabilities. People with physical disabilities are less likely to receive mammograms, Pap smears, and other recommended routine preventive screenings.”
The proposed Department of Justice rule would require health care providers to purchase or lease only accessible diagnostic equipment until they reach an accessibility threshold of 10 percent of their inventory for a particular piece of equipment, or at least one unit.
“People with disabilities continue to face barriers to accessing health care due to lack of access to medical equipment. Barriers such as examination tables that cannot be adjusted in height, mammography machines that must be operated while standing, and weighing scales that are not wheelchair accessible result in unfair treatment and prevent people with disabilities from receiving essential health care services,” reads a fact sheet explaining HHS’s proposed new rule.
The proposed HHS rule would require that within two years, recipients who use an examination table or weighing scale must keep at least one of each accessible.
The fact sheet also states that “facilities and equipment that need to be made accessible to persons with disabilities must be maintained in an operational condition.”
But equal access to health care goes far beyond simply providing physical access: what about those who are blind or deaf?
I have a small machine at home that takes my blood pressure twice a month, and not only does it display my blood pressure on a screen, it also gives me audio (in English, Spanish, and French) of the information on the screen, so people who are deaf or blind can use the machine independently.
Telehealth seems to be popular these days. Some people prefer to consult with their doctor over video when an in-person meeting is not necessary (or difficult or impossible). But DeafHealth, an organization that advocates for accessible health care reform, points out that “while telehealth has transformed health care, challenges remain for many deaf patients, creating inequities in services and care.”
A common problem is that many telehealth platforms don’t offer the ability to add subtitles or interpreters, preventing deaf people from fully participating in the consultation.
Imagine trying to talk to your doctor but you can’t hear what they’re saying. What would you do if you couldn’t add subtitles or a professional sign language interpreter on the screen? This type of communication is too important to rely solely on reading lips.
According to DeafHealth, deaf people can have difficulty doing simple things like scheduling a telehealth appointment because “some health care providers may not be familiar with or able to access video conferencing services or other assistance.”
All of this can make an otherwise everyday experience extremely difficult for people who are deaf or hard of hearing and for whom speaking English is not their primary means of communication. “As a result, patients may avoid seeking care,” DeafHealth says.
The proposed HHS rule states that access to telehealth has “expanded access to health care for individuals in rural areas, those at higher risk for adverse outcomes from infectious diseases, individuals without reliable transportation, and individuals who require specialist consultations for rare diseases.” Unfortunately, this expansion of access has also revealed accessibility deficiencies in the web content and applications some recipients use to deliver telehealth care. Individuals who are hearing impaired may require real-time captioning.
Thus, the proposed rule’s fact sheet states that all persons covered by Section 504 “must ensure effective communication with persons with hearing, vision, and speech disabilities by providing, as needed, qualified interpreters, assistive devices and services such as text telephone, Braille, large print, or electronic information for use with computer screen-reading programs.”
“While many factors contribute to health inequities, discriminatory health care decisions that are often influenced by disability stereotypes are a significant factor,” the proposed rule adds.
To me, it all comes down to this: Despite the law, I have never seen a disability scale because too many medical professionals believe that people with disabilities like me don’t deserve any special consideration or effort. They see accommodating us as a burden.