When an insurance change forced T5 paraplegic Arthur Torrey to give up his outstanding primary care physician, he ended up with a new PCP who was much less impressive. “My exams seemed far less thorough in that they were more on the order of 95% talk, and he only looked at things I specifically said were bothering me,” says Torrey, a United Spinal Association member from Billerica, Massachusetts. “I stayed fully clothed. … And he basically said, ‘Do you want to transfer [to an exam table] or not?’ And it’s like, ‘Well, do you need me to?’” The indifference leaves Torrey wondering if he’s getting an inferior exam because he is a wheelchair user.

His experience is a typical one for wheelchair users, like myself. After my multiple sclerosis progressed and I began using a wheelchair, my doctors stopped checking for testicular or prostate cancers. I know my skin wasn’t being checked for breakdown because I stayed in my wheelchair during checkups. Sure enough, my weakened skin sheared off during a transfer and I spent much of the summer in bed.

I’d always assumed that a physical is a physical, with a fairly standard checklist of procedures, but study after study shows that’s not the case for people with disabilities. So why are we not getting the same exams and health care as everyone else? And what recommendations do experienced accessibility advocates have for getting the best checkups?

The Scale of the Problem

When you can’t step on a doctor’s scale, you’re asked a simple pair of questions that speak volumes: “What do you think you weigh?” and “When were you last weighed?” When I ask these questions of other wheelchair users, I hear the “Ha!” of recognition, and then their answers are all over the board: “Good question”; “it was four years ago”; “over 10 years”; “it’s all just guesswork.” One respondent says she has to use the laundry scale down in a medical facility basement. Apparently, weight is important enough to be asked at every appointment, yet a whole lot of people with disabilities have no idea what theirs is.

“The purpose for [measuring weight] is to educate the doctor and [patient] on how they’re doing with managing their health,” says Laura VanPuymbrouck, who researches accessibility in medicine as an associate professor and physical therapist at Rush University Medical Center in Chicago. Large gains could raise risks of diabetes, heart disease and strokes, while significant losses could signal cancer. Further, people with disabilities have higher rates of obesity and are three times more likely to develop diabetes — both conditions where monitoring weight is important for management.

This state of “weightlessness” for the disability community indicates a lack of accessible medical diagnostic equipment: wheelchair-accessible weight scales, height-adjustable exam tables, mammography and imaging equipment, among other items. The National Council on Disability cites a “mountain of empirical evidence” proving that without accessible MDE in place, people with disabilities experience marked differences in care. And another survey found that less than half of administrators who purchase MDE even know that accessible versions exist.

But, as New Mobility reported in April 2023, the lack of accessible MDE is only part of the problem. When you add in the hurdles of getting to and accessing medical facilities, and the fact that many doctors have little knowledge or training in providing care for people with disabilities, the common-sense expectation of equal care can feel more like a pipe dream.

Making Preventive Health Care Work for You

When our full health care needs are treated as an inconvenience, it becomes crucial for us to speak up and insist on complete exams, and to find the doctors and facilities capable of treating us. This requires plenty of phone calls to doctors, or to others with disabilities for their recommendations.

“Are [the doctors] willing to be a partner with you to collaborate and listen to you? Because quite honestly, people with disabilities are probably more expert in [what’s needed],” VanPuymbrouck says. Ask physicians or their staff whether they have experience or understanding in working with people with disabilities. Don’t just tell them your needs, such as being seen on an exam table or requiring a lift or a scale; force them to document your needs and requests. This way all nurses and assistants and schedulers can see it on your chart. It must be written down as part of your official record. Make sure they know that this is not a matter of convenience or inconvenience, it is a critical requirement for your health, just as it is for everyone else.

Rosemary Ciotti has seen the issue from both sides. As an advanced practice nurse in Alexandria, Virginia, she treats people with SCI in their homes when they need accessible care. And as a wheelchair user due to lupus, she’s faced her own struggles getting routine health care, including injuries during transfers to exam tables, and putting off her own physicals after having bad experiences. Ciotti successfully sued for access to cancer treatment facilities at Washington Hospital Center, in Washington, D.C. It’s important, she says, to specifically tell prospective doctors about your level of disability and the exact accommodations required, down to the precise height of exam table you need. “My one recommendation is don’t surprise them,” she says. “Don’t go in there as a new patient in a wheelchair that they didn’t expect.

“If you get pushback, that’s not the doctor for you. … Be aware of the cues that they really don’t want you as a patient,” Ciotti says. “Take them at their word — go shop for a doctor.”

What goes into a yearly exam depends on your age and personal risk factors, but usually includes many of the following: blood pressure, weight, cholesterol, and tests for bone density, blood sugar, and starting in your 40s, a colorectal test. For women, starting in your 20s, a clinical breast exam and Pap test, and starting in your 40s or 50s, a mammogram. For men, up to about age 40, a testicular exam, and starting in your 40s, a digital rectal exam and prostate-specific antigen test. Vaccinations should be updated. People with disabilities can have higher risks of diabetes, osteoporosis, heart disease and certain cancers, so the exam should address those areas, as well as weight control and exercise.

As you age, a good primary care physician, preferably someone certified in internal medicine, should track the health of all your vital organs with twice-a-year blood tests – including a complete metabolic panel (with special attention paid to kidney function), a CBC (blood panel), complete lipid panel (for awareness of potential coronary artery disease), and other specific tests that match up with your medical record or conditions. If you have nonhealing or recurring pressure wounds on your lower extremities, ask for an ABI test (ankle-brachial index), to check for peripheral artery disease.

“It takes work. It’s not just, you go and accept whatever they tell you,” says June Isaacson Kailes, a disability policy consultant in Los Angeles who has published dozens of studies and books on accessible medicine, including a free resource guide for people with disabilities, Making Preventive Healthcare Work for You. Kailes, a wheelchair user with CP, has been working on the subject since the 1990s, and pours her knowledge into this easy-to-read workbook that teaches users to be assertive at doctor visits, because “being passive can be dangerous to your health.” Filled with resources, it’s a worthwhile download to save and reread before your next physical.

“The core value throughout the little book is you have got to take charge, because otherwise what you get might be potluck,” she says. “You’ve got to work for this to get something that’s of value and quality for you.”

Where’s Your List?

A couple of ideas that work well for me were echoed by the advocates contributing to this article. The first is bringing a friend or family member along as another set of ears and to take notes. It’s important, though, that your doctor addresses you and not your friend as some kind of surrogate for you.

Also, in the weeks and days before an appointment, keep a list of issues and questions. I print a copy for everyone who will be in the room, including the doctor or other health care professionals, who often greet me with, “Where’s the list?” A list keeps the appointment focused and makes sure all my questions are addressed. Working through the list builds the partner dynamic I want and afterward it goes into my medical record.

If your provider’s office isn’t fully accessible or lacks the proper equipment, you need to receive equal treatment, speak up. Kailes lectured her doctor for years about his exam table being dangerous to her and the nurses transferring her. And, eventually, he came through. “The nurse came out and said, ‘Look, finally! We’ve been begging him to do this too,’” she says. “People just don’t get it. … Be in their face and keep bringing it up over and over.”

She urges us to educate our doctors about our disabilities and accessibility needs. “If someone says, ‘I don’t know what to buy,’ well, here are some features that are important and that you should apply when you buy equipment,” she says.

Resources

• Making Preventative Healthcare Work for You by June I. Kailes
• Medical Office & Equipment Accessibility Checklist from United Spinal Association
• New Mobility, “Doctors Still Have no Idea how To Treat People With Disabilities”