A year ago at this time, I was a month into debilitating pain from my lower back seizing up (again). The weeks of late summer that should have been devoted to reading, writing, and gardening were largely spent horizontal in bed, trying to keep my panicking tendencies at bay. I cancelled a work trip to Barcelona, not only because of the pain but because I couldn’t even walk the ten steps to the bathroom without wailing let alone get myself out of our house in the countryside, into a car to take me to the train, to make it back to Paris to then get myself to the airport and onto an airplane.
This wasn’t the first time I was laid up for weeks but what struck me this time was how quickly my world became small.
By the time I was mobile enough to make it back to the city and begin intensive physiotherapy, all I could see were potential hazards that awaited me each time I left my apartment. Uneven pavement. Too many steps. High curbs. Cyclists disregarding rules of the road. Commuters who push and jostle. And that’s saying nothing of the sheer inconvenience of getting around with reduced mobility.
With every step, I focused on exerting as little weight as possible because I was terrified that if my feet hit the ground with normal force, the pain would radiate. I avoided crossing paths with anyone on the sidewalk for fear they’d graze me and knock me off balance. Aside from my wincing, none of this was immediately evident to anyone else, a fact that presented its own challenges. The reality was, my scaffolding was fragile and the city loomed as one giant danger.
I’m much stronger now but I’m always thinking of the words of Elisa Rojas, the lawyer and disability rights activist I profiled for The New Parisienne. “It’s not for us to adapt to society but for society to adapt to us,” she told me. For me, it was my back. For others, it’s an accident that radically changes their lives or an illness discovered later in life, or advanced age — it isn’t, in other words, about being born with a disability but remembering that we all could experience one at some point in our lives.
It’s why she insists handicap is a social construct— the social consequence of having an impairment or limitation. It is not the impairment or limitation that disables a person but society’s lack of accommodation for them that is disabling. And it reflects society’s dominant attitudes about a certain group’s value, “born of the will of one social group to exclude another social group that is not considered conforming to the norm defined by those who have the power to define it,” as she explained in this excellent podcast series from France Culture.
Which is to say, one’s medical diagnosis may be real and unchangeable but society’s reaction to it is not— especially considering that 1 in 6 people in the world (that’s 1.3 billion) experience some form of physical, mental, cognitive or sensory disability. In France, disability impacts 12 million people, or more than 18% of the country’s population. Going up against the ableist power structure is part of what makes the Paralympic Games, taking place in Paris as we speak, an important opportunity to confront long-held beliefs and the work that still needs to be done to correct the city’s infrastructural shortcomings.
The Olympics are commonly cited as an accelerator for urban change but if Paris is a laggard on accessibility, it tracks with a national delay.
France passed its first law requiring accessibility in public spaces in 1975 without a deadline for compliance. It wasn’t until 2005 with the Law for Equal Rights and Opportunities for People With Disabilities that an initial target was set for 2015. But because there was no penalty to guarantee enforcement, the deadline was extended yet again— to September 26, 2024, three weeks from today.1
In practice, it means that any place open to the public, from businesses to schools, must be accessible. (Having assisted a speech-impaired man in a wheelchair at my local bakery yesterday who had rung the outdoor bell for assistance only to be completely ignored, I’m far from confident about any enforcement in the short-term.)
While improvements were made in time for Paris 2024, notably the expanded metro line 14 and the new Saint-Denis-Pleyel station which are both accessible, they fall terribly short of being sufficient. Of the city’s more than 300 metro stations spanning 16 lines, only 29 are wheelchair-accessible. Two out of five RER train lines are meant to be accessible but systematically require the assistance of a rail agent. Buses are fully accessible but most are only equipped to accommodate two wheelchairs at a time. And even when it’s accessible, it doesn’t mean the operator is properly trained, as I’ve witnessed firsthand on several bus journeys. On top of that, wheelchair users report that getting around the city can take two to three times as long as for able-bodied travelers.
Valérie Pécresse, the President of the Ile de France region, acknowledged the issue in recent interviews, adding that adapting the historic metro to be fully accessible would likely take 20 years and cost upwards of 20 billion euros. Meanwhile, the region is already spending 10 billion euros on new and renovated metro and RER trains. (But let’s swim in the Seine, right??)
The Paralympics are a lens on accessibility issues in Greater Paris and also represent an opportunity to shift perceptions among able-bodied spectators about disability. These competitors are some of the world’s most elite athletes. They are not weaker or lesser than because of a physical or sensory disability and this is especially important for young children to see firsthand. At the wheelchair basketball preliminaries on Sunday, I was elated to see such a packed arena and overwhelming excitement. Other events have sold out. And all the while, conversations around the country’s serious and myriad (urban accessibility is only one of many hurdles for France2) issues related to disability have been louder than I’ve ever heard them. This visibility is incredibly important.
But as the Paralympian Matthieu Lartot put it the other night, inclusion can’t only be for twelve days out of the year. It needs to be enduring and improvements need to come much faster.
Further reading
Paris is a utopia for Paralympians…until they leave the Athletes’ Village. [NYT]
An accessible guide to Paris [Condé Nast Traveler]
Paralympics: Changing the way we look at disability [Le Monde in English]
France has been condemned several times by the U.N.’s Committee on the Rights of Persons with Disabilities and The European Council for Human Rights for discrimination against disabled individuals and for failing to comply with its legal obligations guaranteeing increased access to education, healthcare, buildings and housing, and transportation.
Among them institutionalization (see my profile of Elisa Rojas in The New Parisienne) and academic exclusion (fresh news for the rentrée).
This doc on netflix, Crip Camp, is not only a fascinating history about the subject in the US: https://www.youtube.com/watch?time_continue=57&v=XRrIs22plz0&embeds_referring_euri=https%3A%2F%2Fcripcamp.com%2F&source_ve_path=Mjg2NjY. Well done, informative, and so heartfelt.
I feel for you. I’ve had an on and off back problem for 30 years. The first time I had a back spasm felt like someone shot me. However, over the years if I maintained my back exercises it’s manageable and knock on wood I haven’t had a spasm in over 20 years. A good muscle relaxant also helps. Good luck.