By Meagan Gillmore
Navigating the medical system with vision loss is a strange experience for me.
Unless I have my white cane out, most people — including in hospital corridors and doctors’ waiting rooms — don’t realize I have a disability.
I am legally blind, from birth. My vision is about 20/200 — the threshold for legal blindness. Simply put, if people with full vision can see objects from 200 feet away, I need to be standing 20 feet away to see the same thing.
Even then, I am likely to miss the finer details. I don’t rely on braille. I can read most print if it’s large enough and I have the right glasses with me, or if I can bring the words close to me.
Take the hospital in Brantford, Ontario that I went to for cataract surgery, in 2020 and 2023. The small font used on the signs posted around the facility confused me. The signs told me which hallway led to the unit where my surgery would take place. They told me what information I needed to give when I checked in for the surgery. And, I struggled to read them.
I viewed the building around me with a skeptical, perhaps cynical, journalistic eye.
I wondered about the hospital staff. I’m here for eye surgery, I thought. Shouldn’t they automatically have large print?
Then I remembered: I was not at a medical facility devoted to eye care. Most people who come here could read the sign in front of me and all the other ones that blurred by me as I travelled the hallway.
There’s a public perception that those of us who have significant vision loss rely solely on our sense of touch. That isn’t necessarily true. Likewise, it’s not true that my vision loss is the main medical fact about me. Yes, most of my doctor’s appointments are for my eyes. But my eyesight has remained stable for most of my life. When my ophthalmologist touches my eyes, it’s during surgery when I’m heavily sedated and unable to know what’s happening. But at a medical appointment not related to my eyes, I may forget to mention my visual impairment and the assistance I may need — assistance that could, presumably, include touch.
Navigating by touch can be complicated when visiting doctors or health-care facilities, like hospitals. But perhaps establishing connection doesn’t have to be.
People like me, who have had impaired vision since infancy, are fairly rare. Vision loss — like disability generally —increases as people age.
People with vision disabilities account for seven per cent of Canada’s population. It’s predicted that vision loss will increase dramatically in the next decade. In the decades ahead, data indicates that more people with a vision impairment will be using the medical system.
According to Statistic Canada’s 2022 Canadian Survey on Disability, disabilities that relate to sight are the fifth most-common reported disability type; 27 per cent of the people who reported a disability that limits their daily activities reported one related to vision.
To address this surge, Parliament is considering creating a national vision health strategy. A bill requiring the minister of health to develop a national strategy to support the prevention and treatment of eye disease, and vision rehabilitation, has been in the Senate since October 2023. The vision health strategy, as proposed, focuses specifically on eye disease and vision loss.
It includes identifying, in the words of the bill, “the needs of health care professionals and other professionals in relation to training and guidance on the prevention and treatment of eye disease and on vision rehabilitation.”
Helping doctors treat patients with disabilities isn’t easy. For one thing, disabled patients may not talk about how their disability impacts their experience with the medical system. Admittedly, when I’m going to see a doctor who isn’t an eye doctor, I rarely think about my visual impairment once I’ve figured out a way to fill out the forms. For another, doctors may never have had a patient who is visually impaired or blind.
If a patient has a disability, it’s important “to acknowledge it rather than pretend it doesn’t exist,” says Radha Kohly (PGME ’09), the vice-chair of clinical services and wellness at the Temerty Faculty of Medicine’s Department of Ophthalmology and Vision Sciences, and a medical retina specialist at Sunnybrook Health Sciences Centre.
“Don’t make an elephant in the room when there doesn’t need to be one,” she says.
Most of Kohly’s patients are seniors, but their ages have ranged from 18 to 102. Very few patients mention how their vision loss impacts their other medical experiences, she says. Acknowledging the patient’s disability may be the first step in doctors connecting with patients, she says, and ultimately improving health care for patients with vision loss.
“Touch can be an essential part of medical care,” says Kohly. She recommends that doctors tell patients with vision loss what they’re going to do before they do it.
Providing good medical care — care that connects — with patients who have disabilities begins with rethinking disability, says Audrey Yap (MScCH ’10), the accessibility theme lead for Temerty Medicine’s MD Program and an assistant professor in Temerty Medicine’s Department of Medicine. Yap and Janet Rodriguez, a patient mentor and disability justice advocate, work together on the curriculum, which is based on disability inclusion and anti-ableism principles.
Doctors need to shift their perspective and stop thinking about disability as a problem that needs to be fixed, says Yap. For her, this means viewing disability as a normal part of the human experience. It has also meant changing her thinking.
“It’s not that patients with disabilities need a longer time,” says Yap, who is also a physiatrist at Hennick Bridgepoint Hospital, which is part of Sinai Health. “It’s that they need enough time.”
Rushing through an appointment instead of providing the right treatment to a patient would not be providing good patient care, she says. Some patients’ disability makes touch painful. In these cases, communication between patients and doctors is especially important.
Rodriguez, who has had rheumatoid arthritis for 30 years, volunteers as a patient partner to help teach Temerty Medicine residents and learners how to do a musculoskeletal screening exam alongside a rheumatologist. In the exam, doctors need to touch Rodriguez’s joints to see where her pain is, but touch will hurt. Putting pillows underneath a patient’s arms or elbows can help alleviate some of the pain, says Rodriguez. So can pressing down on a joint very lightly. Doctors “don’t need to linger,” she says. But they need to listen to her.
“I will never compare my knowledge to that of my rheumatologist or my surgeons; they are the experts,” she says. “But when it comes to the illness and the journey of my health and wellness with the illness, or the illnesses, that is me.”
Rodriguez makes an important point. For me, it can be natural to assume that I am the only person involved with my disability, but I’m not. The medical system and the people who comprise it are also part of it. Their skills matter. I hope to live a long and healthy life, and I know this likely means that I’ll see doctors for many reasons not related to my eyes. Even when touch is absent, I hope there can be connection, based on humility and mutual respect. •