MS Patient, Ph.D.: Axes of Access Don’t Intersect for the Disabled Patient

A feature of nature is that environment determines the function of form. That’s easy to forget when the typical environment you encounter is built around the way most people function and are formed—bodily, mentally, and sensorily. But if any of these systems goes wonky on you, you’ll realize pretty quickly precisely how the environment can limit function if the form doesn’t align within typical parameters. It’s something we should all keep in mind because, as folks in the disability community will remind you, almost all of us will one day experience having a disability.

A person with multiple sclerosis (MS) can run into these poor fits between environment and form at any turn of the road or the wheelchair, but the last place one might expect a difficulty is in the healthcare environment. I mean, after all, that’s where we go to get our function as fit for the environment as we can, right? So why is it that when, for example, I go to a doctor, the nurse always has me “hop up on” the exam table or, the last time I was in a waiting room in the most excruciating pain, I was left for a half-hour in tears trying to contort my body into a waiting room chair that wouldn’t have been comfortable for a teacup poodle?

My grandmother, who will turn 95 this month and was diagnosed with MS when she was a young woman, just rolled off of her bed in an assisted care facility and broke both of the bones in her lower leg. Why is it that someone like her, who is completely incapacitated from the waist down, is in a situation that allows an accident like this? Because her function doesn’t conform to the form of most beds and the accommodation to protect her from just such an accident isn’t in place. 

These situations aren’t just anecdotes ranging from the mild to the critical. They are real situations that disabled people encounter frequently in the clinical setting. As Tara Lagu and co-authors write in a Sounding Board essay in the New England Journal of Medicine (paywalled), patients find themselves unable to access care for a laundry list of reasons that go well beyond making sure the wheelchair ramp is in place.

Imagine, for example, the patient quoted in their article who needed a Pap smear. She’s wheelchair bound and requests an adjustable-height exam table so that she can move from her chair to the table for what is, as any woman can tell you, already an ignominious experience. Her doctor’s response to the request? From the article: “That’s a great idea. Find a doctor who has one … and I’ll refer you.”

That’s just one barrier. The most unexpected aspects of the environment can affect a patient’s access if that patient’s function and form don’t conform to the norm. Another example Lagu et al. give is of a patient who requested extra time to transfer from the waiting room to the exam room. The day of the appointment, the patient was told that because time windows were only 15 minutes, the appointment couldn’t happen given the extra time the patient would need.

The barriers, you see, aren’t only physical. Even though in that case, the facility had an exam room with a height-adjustable table, the patient wasn’t allowed to access it because of an invisible time barrier.

Another example Lagu et al. give is of a patient who simply isn’t given time to respond to questions and who needs that time because of impaired speech. These barriers not only influence access but also can affect outcome. I’ve had very similar experiences thanks to a processing delay I have, and in ways that could unquestionably affect the outcome of a neurological exam.

The authors provide strategies to address these “Axes of Access,” as they call them. Physical barriers to consider can include everything from parking to accessible bathrooms (meaning wide doors, rooms large enough for a wheelchair, safety bars) to functioning elevators (you’d be surprised) to accessible exam rooms and height-adjustable exam tables. Policy barriers, such as telling patients to do their own accessibility tracking, need to come down and lead to standard operating procedures for asking patients about and documenting and fulfilling their accommodation needs.

And obviously, the core part of the patient–clinician relationship must be functional communication. Clinicians need to remember that even the forms they can’t see and the functions that are invisible, such as sensory and processing characteristics, can be very different from typical and influence communication in unexpected ways. The need for accessible communication isn’t limited to successful spoken conversation but should also extend to features such as legible prescription information and other handouts using large font, availability of American Sign Language interpreters, and where possible, allowing for email and text communication to limit hardship for patients whose mobility problems make an appointment outing into an all-day logistical nightmare.

Disabled people encounter barriers to access in almost every aspect of the way the world is built around them, an environment that’s specifically shaped around the needs of the abled. The one place people with disabilities should feel secure in finding an environment that facilitates their function is when seeking and receiving healthcare. The onus is on providers, as part of that environment, to make sure that happens.

Key open questions

• How will providers afford to make the accommodations that disabled patients need?
• Where can patients find support for encouraging these changes on a broad scale?

Read other MS Patient, Ph.D. blog posts.