Living with disabilities in France

Mickaël is back.

In January 2019, at the start of the second semester of the university year, that was just about the best news any of us had heard in a long time.

Mickaël, a student who had abruptly disappeared from the classroom two years earlier, was returning to complete his “licence,” the French equivalent of a bachelor’s degree. He was picking up where he had left off when the disease first took hold.

In the beginning, the symptoms looked like those of the flu: fever and aching joints. By the time he was diagnosed with meningitis, it was almost too late.

He survived. He emerged from the coma, his mental faculties intact. However, he lost his fingertips and both feet; his legs had to be amputated at mid-calf. He also suffered a severe loss of hearing and sight. For months he lay in a hospital bed. Then he spent months learning daily life all over again.

Today Mickaël travels on his own from Melun, a city to the south of Paris, to Université Paris 8, located in Saint-Denis, in the northern suburbs of the capital, over forty miles from his home. To attend 9 o’clock class, Mickaël must get up at 4:30 AM. Once he has showered, put on his protheses, dressed and made himself breakfast, he walks to the nearest bus stop, using only a cane that neatly folds when he’s in the metro. This is the first step in his journey.

The bus drops him at the suburban train station of Melun. From there he has a 30-minute train ride to Gare de Lyon, the major Parisian train station to points south. Once there, he walks ten minutes underground to line 14 of the metro.

This line, the most recent addition to the Paris system, is the only one adapted to the needs of travelers with disabilities. For all the other lines, it’s hit or miss. Sometimes there may be an escalator, rarer still, an elevator. In most stations, there are flights of stairs to climb.

After a bus, a train and a metro, Mickaël is not yet at his final destination. There is still one more leg of his journey, a change of metro lines, underground corridors to traverse, and then a ride on line 13. In French, I call it “la bien nommée,” the metro line that lives up to its name.

If “13” is an unlucky number, so are all of us who must put up with the overcrowding and delays, which are the daily lot of commuters who depend on this line. Mickaël often stands for the dozen stops of his ride.

Finally, a few minutes before nine, he arrives at the end of the line, Saint-Denis Université. There is an elevator in this station. He takes it to street level and hurries to class. At the end of the day, he’ll repeat the same itinerary in reverse, returning home after 9 in the evening.

Once home, he’ll make supper. Then he’ll take off his protheses and remove his hearing aid for the night. Thanks to them and to his glasses, Mickaël is able to attend classes and navigate a transportation system that has some serious catching up to do before it can claim to accommodate passengers with disabilities.

Such is public transportation in the Paris region. I might add, such is France.

In early May, caravans of the handicapped, les handicapés as they are called in France, set out from points all over the country, “on the road for (their) rights,” converging in major French cities on May 14th. On that day, a protest march was held in Paris, with slogans such as “liberté, égalité, mobilité,” and “my handicap is exclusion from major services.” The association “France Handicap” presented a letter to President Macron, reminding him of his campaign promise to make the handicapped a priority.

So far, reality has not kept pace, and his government’s measures in favor of the disabled are timid or limited to good intentions.

At this point, it may be interesting to note the French have chosen the English term “handicapped” for those with disabilities. This word, handicapé, came into use in France in the 1980’s as the inclusive term for all those with disabilities. In the United States, at about the same time, the term “handicapped” was discarded in favor of the “person-first” approach: a person has a disability; a handicap is a barrier or circumstance.

In other words, the Paris metro system is full of 'handicaps': stations with lots of stairs and no elevator or escalator. There is also the 'circumstance' of employment discrimination. In France, the unemployment rate among persons with disabilities (19%) is double that of the general population.

The current Secretary of State in charge of the handicapped, Sophie Cluzel, has pledged to create 100,000 new jobs for persons with disabilities by 2022. The government has also reaffirmed its commitment to making accessible all buildings open to the public. This is a work-in-progress and there is still a long way to go.

Throughout Europe, May 16th was Duo-Day. Begun in the Republic of Ireland in 2008, Duo-Day has set as its goal the bringing together of prospective employers and persons with disabilities. For example, after an initial contact through an on-line site, lawyers with disabilities meet the heads of law firms, disabled gardeners meet the owners of greenhouses or flower shops. On the evening news that day, a journalist in a wheelchair presented a part of the national news.

Meanwhile Mickaël has almost completed his bachelor’s degree. Despite an open sore on his knee, he travels regularly to university, a commute of over 2 hours.

He also battles with bureaucracy, one of the greatest handicaps a person with disabilities must face. A young man of unshakeable good spirits, he has met obstacle after obstacle. He is entitled to free transportation, but only in the zone where he lives. Because he is determined to finish his studies at the university where he began, located in a different zone, he must pay most of the ride out of his own pocket and this adds up to a lot of euros each day.

Mickaël has also learned to drive a standard transmission car. He thought this would entitle him to an aid for the purchase of a vehicle. The official response was “non.” He can only receive aid for a car adapted for “handicapés.”

Yes, Mickaël is back and may he go far—for a person with disabilities must strive ten times harder than the rest of us.

The Day After: Notre Dame de Paris

I remember my first time—my first visit to Notre Dame de Paris. I was 17 years old, a student at Pottsville Area High School, travelling with other students and with Mrs. Alice Ney, our courageous chaperone. We were fearless, sneaky. We did not stay with the group.

With my friend Jane Dolbin, who died in 2008, we wandered off and went shopping on Boulevard Saint Michel. We each bought a new dress and put it on in the boutique. Then we proudly marched down the boulevard and crossed the Seine to Notre Dame, paying a couple of francs to climb the steps to the northern tower, the one that, last night, was touched by the flames at the cathedral’s heart.

Once at the top, we had a panorama of the rooftops of Paris that took our breath away. The sun was shining, a strong wind was blowing, but little did it matter. We had a magnificent view of the famous spire of the cathedral, the one that fell a few minutes before 8 PM last evening. We also looked down on the flying buttresses that withstood last night’s fire and on the lead roof, held up by “the forest,” an immense wooden frame made of oak beams dating back to the cathedral’s construction in the 12th and 13th centuries.

Last evening the fire began in “the forest,” beneath the eaves. The lead roof melted, causing some parts of the vaulted stone ceiling of the transept to fall.

Standing atop Notre Dame nearly fifty years ago, wearing my Parisian minidress, I was unaware the wind had lifted it up around my waist, exposing my American panties to a delighted security guard. My friends knew; they did not tell me.

That is my first memory of Notre Dame de Paris. It may seem trivial, too personal, in light of the destruction wrought in a few hours to a religious and historical monument that has withstood wars and revolutions for more than 8 centuries. Yet, I’d go so far to say that Notre Dame de Paris, My Lady, is a personal part of my life, a friend whose door is always open; who, since my first trip to France, has welcomed me hundreds of time. She would smile and understand two teenagers who, on their first trip to Paris, wanted more than anything else to look like the elegant Parisians who surrounded them in the streets.

These days, whenever I can, I cross the Seine on foot, just so I can have a look at her. No matter what the weather or season, she looks beautiful, day or night, a great lady promising comfort and intercession to all who open their hearts to her.

But “these days” are now the past. At the time I write, there has not yet been an estimate of the damage. For example, it is not yet possible to approach the church’s magnificent organ, one of the finest in the world, rebuilt over time but still containing pipes from the Middle Ages, capable of “singing” like a choir of angels or creating the ominous rumble of approaching thunder. No one can say what state they are in today, nor can anyone know if, upon reconstruction, the church will regain its exceptional acoustics.

Paris, France, the world is in mourning for a beloved monument and a spiritual beacon, today covered with ash and exposed to more damage by falling rain entering through the roof. In one night, in our careless times, where no one has time to wait, and everything must be done asap, roaring flames proved they too can work fast, erasing the past in the blink of an eye.

Last evening, as the flames were being brought under control, President Macron opened a national and international fund raising drive to rebuild Notre Dame de Paris. A church, but more than a church, a historical monument, but so much more, this cathedral is “everybody’s home.” No one has ever paid an entrance fee to cross its threshold; Notre Dame welcomes us all.

In his 1831 novel Notre Dame de Paris, Victor Hugo gave the world its first bird’s eye view of the rooftops of Paris, and he played an important role in awakening public awareness to the church’s importance to all of France.

In the 20th century, Americans, perhaps more than the French, understood his message, and Hugo’s novel became a staple of Hollywood. In the 1923 silent film classic, “The Hunchback of Notre Dame,” the hunchback, played by Lon Chaney Sr., pays tribute to the church’s bells as he effortlessly climbs up and down the façade. In this moving excerpt, to the accompaniment of organ music, Chaney communicates the cathedral’s grandeur (https://www.youtube.com/watch?v=84lab78RiPg ).

In 1956, Anthony Quinn became Quasimodo and Gina Lollobrigida the beautiful and seductive Esmerelda (https://www.youtube.com/watch?v=Df2xIFEABjc ). And in 1996, it was Walt Disney’s turn in an animated version.
More than the Eiffel Tower, more than the Moulin Rouge, it is Notre Dame de Paris “who” reaches out to the world to say, “this is Paris,” and it is the city’s most visited monument. That is why today I feel I’ve lost a part of myself and I’m sure many others feel the same.

Yet the fire has not destroyed the church’s contours. The towers, the walls and the flying buttresses still stand, though weakened by time, neglect and now, flames.

The spiritual message of Notre Dame is that humans alone cannot save themselves. Now Notre Dame de Paris seems to be saying she cannot be saved without us.