I have no idea how much I weigh.
That’s because I never come across a scale that’s wheelchair accessible. The last time I recall getting on a scale was when I was in high school at a boarding school for disabled kids operated by the state of Illinois. They had an accessible scale that was a large platform built into the ground, and I’d roll my wheelchair onto it. It measured the weight of my chair and me, then weighed my chair without me and calculated my weight. That school may have been a suffocatingly oppressive dumping ground of low expectations, but at least I knew my body weight.
I graduated from there fifty years ago. Since then I’ve pretty much been guessing that I’m holding steady in the vicinity of 170 pounds. I base that on the results of a ritual I conduct twice a year. In the spring, I take my spring/summer clothes out of the closet and put away my fall/winter clothes. Every fall, I do the opposite. I joke that if the clothes I take out are tighter than they were the last time I wore them a few months ago, they must have shrunk in my closet. Perhaps there’s something about the atmospheric conditions in my closet that makes clothes shrink.
For the most part, my clothes still fit. So, apparently, I’m holding my own.
It seems I’m not the only disabled person who doesn’t know their body weight. In January, the U.S. Department of Justice (DOJ) published in the Federal Register a notice of proposed rulemaking under Title II of the Americans with Disabilities Act (ADA) intended to improve access to medical diagnostic equipment for people with disabilities. That includes things like medical examination tables, weight scales, dental chairs, x-ray machines, and mammography equipment.
A DOJ statement announcing the action said, “The department has received many complaints from individuals with disabilities that health care providers have not provided them with basic, vital health care—for example, not obtaining an accurate weight when administering anesthesia before surgery.”
Last September, the U.S. Department of Health and Human Services (HHS) published a proposed rule titled “Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance.” This was intended to update a 1977 rule that spelled out accessibility obligations under Section 504 of the Rehabilitation Act of 1973. Section 504 says that people with disabilities cannot be subjected to discrimination on the basis of disability in any program or activity receiving federal funding, which is just about every health care facility. A lot has happened since 1977, which was long before the ADA became law in 1990. So the regulations needed updating.
When announcing the action, HHS Secretary Xavier Becerra said, “For many Americans, accessing basic health needs is still challenging. Some persons with disabilities may have to drive hours to get an accessible mammogram or receive the benefit and advancements of our health care system.”
The proposed change states that “although section 504 has prohibited discrimination in any program or activity receiving federal financial assistance since it was enacted, discrimination continues to underpin health inequities faced by people with disabilities . . . . People with disabilities are significantly more likely than people without disabilities to have unmet medical, dental, and prescription needs
. . . . Individuals with disabilities in the United States have a shorter average life expectancy than people without disabilities and are three times as likely to have heart disease, stroke, diabetes, or cancer than adults without disabilities. People with certain types of serious mental illness have a significantly shorter life expectancy than the general population, and people with mental illness have an increased risk of physical disease, as well as reduced access to adequate health care. Pregnant people with disabilities receive poorer maternity care, experience higher incidents of pregnancy and birth-related complications, and are eleven times more likely to experience maternal death than people without disabilities. People with physical disabilities are less likely to receive mammograms, Pap smears, or other recommended routine preventive screenings.”
The proposed DOJ rule would mandate that health care providers purchase or lease only accessible diagnostic equipment until they have reached an accessibility threshold of 10 percent of their stock of the given machine, or at least one unit.
An HHS fact sheet explaining that agency’s new rule proposal says, “People with disabilities continue to experience barriers to accessing medical care because of inaccessible medical equipment. Barriers such as exam tables that are not height adjustable, mammography machines that require a person to stand, and weight scales that do not accommodate wheelchairs result in inequities and exclusion from basic health services for individuals with disabilities.”
The proposed HHS rule requires that within two years, recipients that use an examination table or a weight scale have at least one of each that is accessible.
The fact sheet also says that “facilities and equipment required to be accessible to individuals with disabilities must be maintained in operable working order.”
But equal access to medical care goes far beyond providing just physical access. What about people who can’t see or hear?
At my home, I have a little machine that I break out twice a month to measure my blood pressure. Not only does it show me my blood pressure on a screen, but it also delivers the information on the screen in an audible voice (in English, Spanish, or French). Thus, a deaf or blind person can also independently use this machine.
Telehealth seems to be a popular thing these days. Sometimes people prefer consulting with a doctor via video when it isn’t necessary (or it’s difficult or impossible) to do so in person. But the accessible health care reform advocacy group DeafHealth notes that while “telehealth has transformed health care . . . challenges still persist for many deaf patients, resulting in an inequitable gap of services and care.”
A common problem is that “many telehealth platforms do not offer captioning or the ability to add an interpreter, making it impossible for deaf individuals to fully participate in appointments.”
Imagine that you’re trying to talk to a doctor but you can’t hear what they’re saying. If you can’t add captioning or a professional sign language interpreter to the screen, what do you do? This kind of communication is much too important to rely on lip-reading.
DeafHealth says deaf people encounter problems doing simple things like scheduling telehealth appointments because “some health care providers may not be familiar with or able to use video relay services and other accommodations.”
All of this can make a rather routine experience quite daunting for people whose primary means of communication is not spoken English, because they are deaf or otherwise have difficulty hearing. “As a result,” DeafHealth says, “patients can avoid seeking care.”
The proposed HHS rule states that the ability to access telehealth “has expanded health care opportunities for rural communities, individuals at increased risk of negative outcomes from infectious diseases, individuals without reliable forms of transportation, and individuals needing to access specialists in rare diseases, among others. Unfortunately, these increased opportunities have also exposed accessibility shortcomings in the web content and applications used by some recipients to provide telehealth. Individuals with hearing disabilities may require real-time captioning.”
Thus, a fact sheet of the proposed rule says that all of those covered by Section 504 “must ensure effective communications with individuals with hearing, vision, and speech impairments through the provision, when necessary, of auxiliary aids and services such as qualified interpreters, text telephones, and information in Braille, large print, or electronically for use with a computer screen-reading program.”
The proposed rule adds: “Although many factors contribute to these health inequities, discriminatory medical decisions—often driven by stereotypes about disability—are a key factor.”
To me, this is what it all comes down to: I never see an accessible scale because, despite the law, too many medical providers think disabled people like me aren’t worth extra consideration and effort. They see accommodating us as a burden.