by Leela MadhavaRau
I have rheumatoid arthritis. It’s an insidious, often agonizing, auto-immune disease that attacks your body’s joints and can make even simple movements like walking a deeply painful trial. Having RA means I have a disability.
Today, I see myself as part of the disability community. But for a long time, because RA isn’t necessarily visible to the casual observer, because those with the disease aren’t necessarily in a wheelchair or using a walker at all times, I wasn’t sure I belonged.
As a long-time professional working in the area of equity, inclusion and human rights, disability had always been a part of the dialogues that I was having, although it was a subject too often ignored in the EDI industrial complex. But because my own disability was often “invisible,” it took me some time and patient education from disability rights activists to understand that, yes, I am a part of that community.
Through my university years, I didn’t think too deeply about “keeping fit.” I walked or cycled everywhere while at McGill and Cambridge, and had occasional bouts of swimming lengths or taking aerobics classes.
Moving back to Canada, I kept up with walking and for nigh on 30 years, that has remained my primary form of exercise. I walked really fast all the time. People would comment on it at the campus in southern California where I worked for 16 years – I think because many people there didn’t use their body as their main form of locomotion.
Then I developed RA. The diagnosis came after the joints in my hands seized up, although that turned out to be just the canary in the coalmine. It was my feet that began to degenerate first. I kept up with my rapid pace in spite of increasing pain until my hallux (big toes) were so bent as to make it hard to get shoes to fit. I went for a double bunionectomy (never one to do things by halves) and after a six-month period of frustrating recovery, I could suddenly walk at my old pace.
But after a few years, the hallux on my right foot became so painful I was basically walking on the side of my foot. This exacerbated other RA symptoms – notably degenerative disc disease, particularly in the sacroiliac joints. So, I had the toe fused and went through another period of recovery – during which, I discovered later, I actually broke the toe, which lengthened the healing time.
Walking became easier once again, even as I worked through other RA-related issues necessitating a hysterectomy, as well as a move to infusions of biologic medications and an additional diagnosis of fibromyalgia (common with RA). In a six-month period in 2017 and 2018, I lived through two dramatic episodes – a bleeding ulcer resulting in the lowest hemoglobin levels the hospital had seen in someone still alive, followed by (and caused by the ulcers) peritonitis and emergency abdominal surgery.
Initially it became a victory just to be upright again, then I began to creep along the ward with my IV pole and the pump attached to a naso-gastric tube. I eventually progressed to a walker, and finally I was able to inch along unaided.
Over the years, I have become used to the comments: “But you look so good” or “You still seem to get around” etc. But when I was using an apparatus – a kneeling walker, walker or wheelchair – the difference was palpable. Then I could be treated as someone with a deficit – and that was how so many people automatically treat those with obvious disabilities. The old medical model versus social model of disability brought to life.
But having my disabilities made visible also made me realize that I had, in fact, been living with disabilities since I was a child. Decades ago, though, there was little discussion about “invisible,” “unseen” disabilities.
A single incident in high school made this very clear to me. I was diagnosed with migraines when I was 10. I discovered early on that I could usually cope when one came on by focusing intently until whatever needed doing was done and then I could collapse in a dark room. I started to develop migraine with aura which was frightening but gave the opportunity to take medication. One day in high school, I ignored the aura and, par for the course, the migraine developed 30 minutes later. Teachers and friends couldn’t understand why I needed to get home – “it’s just a headache,” “I get headaches all the time.” I was in no state to try and explain pain so severe that even when lying down, moving an eyelash felt like a knife going through my brain.
Thanks to my work in EDI, I was fortunate to be able to deepen my understanding about the disability movement from a superstar, Dr. Victoria Lewis. Vicki, a post-polio survivor, is a pioneer in theatre and disability, working since the 1980s in a variety of theatrical models—grassroots, community-based, regional not-for-profit, and television and film. Her developmental work reshaped the depiction of disability on the stage and nurtured a generation of disabled playwrights and actors, now at work throughout the US.
We spent hours discussing issues of disability, finagling ways to get disability into various parts of curriculum and into students’ minds. Vicki made sure I knew the ancestors who fought for rights and for space in the conversation. Those activist pioneers who rejected in the strongest terms the tropes and cliches about disability as a tragic experience or, perhaps worse, as the basis for “inspiration porn.”
“Disability only becomes a tragedy for me when society fails to provide the things we need to lead our lives––job opportunities or barrier-free buildings, for example.” said Judy Heumann. “It is not a tragedy to me that I’m living in a wheelchair.”
Australian comedian Stella Young puts it even more bluntly in one of her shows.
“Well, ladies and gentlemen, I’m afraid I’m going to disappoint you dramatically,” she said. “I am not here to inspire you. I am here to tell you that we have been lied to about disability. Yeah, we’ve been sold the lie that disability is a Bad Thing, capital B, capital T. It’s a bad thing, and to live with a disability makes you exceptional. It’s not a bad thing, and it doesn’t make you exceptional… And in the past few years, we’ve been able to propagate this lie even further via social media. You may have seen [slogans] like this one: ‘The only disability in life is a bad attitude.’ Or this one: ‘Your excuse is invalid.’ Indeed. Or this one: ‘Before you quit, try!’ These are just a couple of examples, but there are a lot of these images out there. You know, you might have seen the one, the little girl with no hands drawing a picture with a pencil held in her mouth. You might have seen a child running on carbon-fiber prosthetic legs. And these images, there are lots of them out there, they are what we call inspiration porn. And I use the term porn deliberately, because they objectify one group of people for the benefit of another group of people. So in this case, we’re objectifying disabled people for the benefit of non-disabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, ‘Well, however bad my life is, it could be worse. I could be that person.'”
As I was becoming a more and more passionate advocate for disability issues, I was slowly accepting myself as a member of this broad and diverse community, a member with a number of privileges, but a member nonetheless. In moving to that understanding, I had to accept that I was never going to be whole again. Living my daily life was always going to be that much more difficult. Pain would be a constant nagging companion.
But I also learned that pain and disability did not mean having to shut myself off from simple pleasures, pleasures of the body as well as the mind. And I found that my mind and my body, even with the latter’s limitations, could work together.
In 2021, I got a dog. There were many reasons for this but the fact that it would force me to get out and walk was certainly one of them. Atlas, a 2.5-year-old Siberian Husky rescue, came into my life, and walking took on a sudden, and very insistent, urgency. Atlas is only happy when he walks at least 10km a day and has little patience for dilly-dallying (except on his part when investigating blades of grass, dog poo, fleeing creatures, etc.). Suddenly, I was a real walker – out on the Canal Trail every morning around 6am! Pain be damned!
I also discovered that this regularly scheduled walking gave me 90 minutes (on weekdays) and nearly three hours (on weekends) to think. To think about all sort of topics particularly as dawn breaks and the sun rises. I came across a New Yorker piece entitled “Why Walking Makes Us Think” and realized I was not alone in indulging in this wondrous pastime and there were physiological reasons behind it:
What is it about walking, in particular, that makes it so amenable to thinking and writing? The answer begins with changes to our chemistry. When we go for a walk, the heart pumps faster, circulating more blood and oxygen not just to the muscles but to all the organs—including the brain. Many experiments have shown that after or during exercise, even very mild exertion, people perform better on tests of memory and attention. Walking on a regular basis also promotes new connections between brain cells, staves off the usual withering of brain tissue that comes with age, increases the volume of the hippocampus (a brain region crucial for memory), and elevates levels of molecules that both stimulate the growth of new neurons and transmit messages between them.
I have found that my walking thinking has become more profound since the onset of another RA-related symptom, tinnitus. While people often describe a ringing in the ears, mine is a more unclassifiable buzzing. When it first became pronounced, I had a similar feeling to the claustrophobia I experience in confined spaces – what would it mean to never again experience silence? To avoid dealing with that, I started listening to the radio as I walked (yay for CBC) and their discussions would lead me down pathways of thought that took me away from my own concerns.
I “write” pieces as I walk (some of this was done that way), wishing I had the power to get messages out about the opportunities to work with Mother Earth if only we would heed advice. This is almost a meditative practice – “almost” because I have to remain alert to cyclists, other dogs and their owners, and animals Atlas will regard as prey. But that has become part of the meditation over this past two years.
Then, about two months ago, I realized I was finding it harder to block out the pain in my feet, heels and ankles. Objectively, this isn’t surprising – I have RA, most of my toes would now be called “hammer toes” and the hallux are both tilted away from the straight. To alleviate the pain, I was walking in that strange manner that exacerbates the pain in my sacroiliac joint, hips and knees.
Action was called for – a visit to the podiatrist followed a regular visit to my rheumatologist. And this down-to-earth woman gave me hope. She intuitively understood that the goal was to keep moving, preferably walking long distances. She was blunt in her assessment that my right foot with its fused hallux, other toes with tendons cut and arthritis-riddled ankle didn’t give a lot of scope but there was more hope for the left. She said,“Get shoes that address these issues and we can work to modify them, constantly wear whatever device works to keep the hallux toes away from the next toe, no more sandals without backs, and do these exercises daily.” She didn’t pretend there would be any return to my younger days with fully functional feet but she was clear there would be a future for walking within certain limitations.
I left the office feeling seen, heard and believed. I sat down and wrote this because I rarely feel hopeful and that day I did. And then the next day, and the day after that, and the day after that, when Atlas jumped on the bed to remind me it was time for his walk, that hope has persisted.
Originally posted here on the blog Leela’s Musings and Ruminations.
Leela MadhavaRau is the owner of LMR Human Rights and Equity Consulting. She has spent her working life in the field of equity and inclusion, working at universities in both Canada and the United States. Her academic background is in Social Anthropology, with a specific focus on the transmission of culture across time and space. Her degrees are from McGill and the University of Cambridge. She has lived a life between cultures and countries, one of the few multiracial children born in 1960’s London (UK). Leela immigrated with her family to Canada in the 1970’s when “Where are you from” was one of the most common questions. Her career has been one of working to create dialogue; wanting all of us to be able to maintain curiosity and be independent thinkers. This responsibility has been inculcated in her four children, now ages 23 through 30. She adopted her Siberian Husky, Atlas, in May 2021 and her life hasn’t been the same since!
