I have something a bit special for you today. A few weeks ago my lovely blog friend Jodie at Lupey Loops wrote a tribute to an incredible Australian disability activist, Stella Young, who passed away suddenly in December 2014. She also wrote about a planned yarnbombing memorial for Stella, who was a passionate knitter, and laid out some of the many reasons why such an event was exceptionally misguided. This got me thinking about my own experiences of exclusion from public spaces when I am using my wheelchair and in particular an article one of my best friends, Matthew Dunn, wrote about it a few years ago.
He has agreed to allow me to republish his article here for you, and I encourage you to share his story with your friends and family - the more people who are able to notice the ways in which we set up our world to exclude those of us who do not have equal ability, the more chance there is that we, as society, can do something about it. As Stella herself said, "No amount of smiling at a flight of stairs has ever made it turn into a ramp".
The Ups and Downs of Ramps and Stairs
by Matthew Dunn
first published in Voiceworks Magazine Issue 92
When Michie got her wheelchair everyone wanted a ride. That may sound callous, but with her condition a temporary one, and being amongst the young at heart, my friends and I were eager to take it for a spin. Like crutches passed around the schoolyard after a hurt ankle, the wheelchair did the rounds. We wanted to see how fast we could go, how hard it was to turn. But the real lessons resulted from seeing a previously invisible illness take physical form. Suddenly, a poorly understood and often ill-diagnosed condition was given a symbol so insistently recognisable that it could not be ignored. In some circumstances this made life easier, drawing a nebulous collection of symptoms into their most essential point: restricted movement. But it also exposed Mich to discrimination systemic of a society that functions on the assumption of equal ability.
In many ways Michie was extremely lucky. Though her chronic fatigue restricted her to the wheelchair for long trips, she was able to walk around the house and even climb a step or two with assistance. The cause of chronic fatigue syndrome is not yet understood, but it’s basically what it says on the tin: tiredness way out of proportion with the things you do. Not just lifting heavy things or running, but mental exertion as well. In Australia, over 180,000 people are believed to be affected by chronic fatigue, so it’s likely you know someone with the syndrome.
Of course, you may not realise. As with many disabilities, a casual glance will not convey the seriousness of the condition or the challenges it creates. Like fibromyalgia, depression or dozens of other invisible illnesses, chronic fatigue doesn’t flag its presence to passersby. As a consequence, people are remarkably adept at marginalising and ignoring the sufferers of such conditions. Even with full knowledge of what was happening, it was not until the permit appeared in her car that I realised Michie could be classified as disabled. The word hadn’t occurred to me. To accept her condition as a disability meant a whole new level of seriousness. But what other word could there be for a chronic illness that hinders movement, made everyday chores a challenge and full-time employment all but impossible?
Mich had experienced all of the above, losing her job as a lawyer when her sick days ran out and becoming heavily reliant on her husband to keep the household running. But if there was one thing she was not going to lose, it was our pilgrimage to the temples of comedy. Each year Mich and I, accompanied by about a dozen other friends, make the trip down to Melbourne for the comedy festival. We rent an enormous house, criss-cross the city in search of delicious food, collect geeky paraphernalia and, of course, we laugh ourselves silly at some of the best comedy the world has to offer. Developing chronic fatigue syndrome was never going to stop Michie from this yearly tradition. However no amount of enthusiasm could alter the fact that she would have to approach that year differently. We found accommodation as close to the city as we could afford and allowed extra time for getting between venues. And for the first time Mich hired a wheelchair.
Without the chair, the trip wouldn’t have been possible, but it presented a whole new range of challenges both expected and previously obscured. Public transport, naturally, was no easy feat. Our adopted home was situated on a tram line, so we made a few attempts to catch it into the city. Whilst Mich was strong enough to climb the few steps aboard, the task required military precision. After arriving early at the tram stop, we would spread our group across multiple entrances to avoid jams. When the doors opened one person would help Mich up the stairs as another folded the wheelchair and hauled it aboard. After everyone’s personal space had been violated we would finally arrive in the city, only to do it all in reverse, this time with twice as many other passengers. In the end, it was hardly worthwhile struggling with public transport. Even taking into account the occasional narrow, tree-root-cracked footpath, most of the time it was easier for one of us to roll out early with Mich rather than waiting for the tram.
Of course, accessible trams do exist in Melbourne. With lowered floors and specially designed stops, they allow easier access for the mobility impaired as well as the elderly and parents with prams. Just under one hundred of Melbourne’s trams are accessible by design, but coming from the largest operating tram network in the world, this represents a mere fifth of their total fleet. For the able-bodied these accessible trams are indistinguishable from their traditional counterparts. Indeed, it was only when Mich got her wheelchair that I realised they existed, despite having taken one to St Kilda the year before. But in our adopted suburb the trams were tall and merciless. It was a small difference of design, but a powerful symbol of institutional priorities. Seeing how easily this hardship could be averted made me realise just how much the practical impact of disability was socially constructed. It was not just Michie’s illness that made it difficult, but the expectations of youth and health we had built in to our infrastructure. This was echoed in the buildings themselves. After years of visits, many of the venues were now familiar, but this year we often needed to navigate our way down unmarked corridors to infrequently used elevators. These difficulties followed us home. Despite having carefully chosen a place with a kitchen, bathroom and bedroom on the ground level we arrived to find an unfortunately placed table blocking the hallway. This became more than merely unfortunate when we discovered that it was, in fact, bolted to the floor. Enough room for walking, but definitely not for wheeling. Had Michie been fully confined to her wheelchair she wouldn’t have made it past the front room.
The most unanticipated challenge had nothing to do with narrow halls and everything to do with narrow minds. Despite Michie being the brains of the whole operation — coordinating accommodation and shows, aligning the flight plans of friends from four different cities — she was often overlooked. I was slow to notice, being the unobservant oaf that I can sometimes be, but after a few nights of wheeling her around Melbourne, she pointed it out. The way people’s eyes would slide straight past hers, smiling in understanding at me, not her. No doubt many felt much the same way I did before sharing this experience with Mich, terrified that they would blunder onto sacred ground, expose their ignorance and cause insult. They thought, perhaps, that it was better to stay silent, to avoid contact. Of course, it bettered nothing. Such unofficial, unspoken segregation does more harm than any well-meaning fumble ever could. It sends a message that disability is something that should cause shame or fear — that it is a cross to bear silently and individually. But disability is not simply an isolated affliction. It is only through dialogue that there is any hope of remedy.
It’s now over a year since Michie was diagnosed with chronic fatigue syndrome and sadly, she hasn’t yet recovered. I spent the majority of last week acting as arms for hire, helping her pack her belongings for a shift to a new apartment. Her old place featured a bathroom and a kitchen separated by an insurmountable staircase. For Michie, that flight of stairs was a mountain. When I arrived to help with the packing she made the trek to the lower level and looked as unfamiliar with her surroundings as I did. She hadn’t been downstairs in months. Whilst having your man cook for you probably sounds like a dream to many a reader, for a foodie like Mich, having to choose a bathroom over the kitchen was heartbreaking.
So when Michie gave me the tour of her new, single-level place, complete with lift and nearby supermarket, she couldn’t have been happier. Armed with a single crutch and a handful of grocery bags she farewelled her husband and I and left for her first solo shopping expedition in a year. Half an hour later she returned, tired as f***, but utterly triumphant. It was a small step, to be sure, but as anyone who has ever used a wheelchair knows, mounting one small step can be one hell of an achievement. While Michie was able to conquer some of the most pressing difficulties of her situation, no single person is capable of effecting the kind of change necessary to improve the situation of chronic fatigue sufferers. Like many other invisible illnesses, it can often be ignored until the glaring sight of a wheelchair brings it into focus, but this need not, and indeed should not, be the case. Whether it be public transport or public perception, the only way to end discrimination is for people to take the challenging, but far more rewarding approach of engaging with sufferers of such conditions. By reading more, talking more and demanding change, we can all help to reduce the stigma and complications of these invisible illnesses.