The New York Times this week published on its website a long article detailing the very last day of the life of Marieke Vervoort, the Special Olympian who opted for euthanasia when she could no longer bear the pain of a degenerative spine and muscle disease.
The feature includes revealing and intimate photographs, including one in which the sports star known as Wielemie lies in what appears to be a coffin as her mother kisses her on the forehead in one last gesture of farewell.
But the family of Wielemie have complained that the article goes too far in invading her privacy.
Marieke died on 22 October at the age of 40, and the news was covered worldwide, because of Belgium’s status as one of the few countries that allows euthanasia. Since the age of 14 she had been suffering from reflex sympathetic dystrophy, a degenerative disease which over time became worse, causing her severe pain at the best of times, interspersed by episodes of insufferable agony.
Having been a wheelchair basketball player, a swimmer and a triathlete, she later took up wheelchair racing, winning gold and silver at the London Paralympic Games in 2012, and breaking European and world records in Belgium in 2013. After suffering a shoulder injury and severe burns to her legs, she continued participating in major tournaments, and turned up at the Paralympics in Rio in 2016, where she met photographer Lynsey Addario, famous for her war reporting, and for having spent some time in prison in Libya for pursuing her photo-journalism.
The two became friends, and when it became clear that Marieke had received permission to undergo euthanasia when she was ready, Addario had the idea of making a feature covering her last days.
Marieke said that the decision to opt for euthanasia was a liberation for her, as it meant that however terrible the suffering might become, she had the solution in an envelope at home. She fully embraced the idea of dying at a time of her own choosing, and was close friends with Professor Wim Distelmans, an advocate of the right to choose and the chair of the committee that reviews all euthanasia cases.
Addario meanwhile approached the New York Times, and she was joined by journalist Andrew Keh, a sports reporter who had also come to know Marieke. Since the athlete’s death was planned in advance, they were able, with her full permission, to be present to make a reportage of her last days. That story has now been published, exceptionally outside the NYT’s usual paywall.
“Champagne flutes were hastily unpacked from boxes, filled to their brims and passed around the room,” the article begins. “Dozens of people stood around inside Marieke Vervoort’s cramped apartment, unsure of what to say or do. This was a celebration, Vervoort had assured her guests. But it did not feel like one.”
In a long and personal reflection on the assignment, Addario writes, “I’ve photographed families torn apart by war and extreme poverty. Until Marieke, I had never met someone who had elected to die. I had never met someone so full of life — so emotionally determined that she could complete a triathlon in a wheelchair while deeply sick and heavily medicated — but who couldn’t muster that determination to plow through the daily pain and loneliness of a degenerative muscular disease, year after year.”
The final reportage was planned well in advance.
“On Oct. 22, Marieke was scheduled to die at home in Diest — this time, she hoped, for real. A few weeks earlier, when Marieke and I discussed how she wanted me to photograph her death, she was more lucid than I had seen her in almost all the time I had known her. She vacillated between excited and strangely calm. The doubt was gone; she no longer booked dates into her schedule for months — or weeks — in the future. She asked me to be one of a handful of people in the room with her during her euthanasia.”
But now Marieke’s parents, Jos Vervoort and Odette Pauwels have expressed misgivings about the exact extent of the intimacy of the reportage. “We can’t bear it,” father Jos said. “We were just starting to feel a little bit better, but this reportage has pushed up back down deep into the darkness.”
Particularly painful for the loved ones is the photo where his daughter lies, moments after her passing, in the Coca-Cola red coffin she specifically requested, as Odette kisses her tenderly on the forehead.
“That is such an intimate moment,” he said. “So private, so fragile, so our own. So confrontational too. No-one but us should be allowed to see that, and now the whole world can watch. That photo is a slap in the face for us.”
Odette meanwhile claims that Addario was in the room at Marieke’s request, but as a friend rather than a photographer. When she heard the click of the camera’s shutter, she assumed Addario was taking a photo of Zenn, Marieke’s service dog and inseparable companion.
The parents asked for prior approval of the photos, but the two NYT reporters explained that was not the paper’s policy. When Jos expressed his unease at the publication of the death photo in particular, Addario said she had agreed everything in advance with Marieke. The parents have now decided not to take the matter any further.
“There’s no point in trying the matter in the US,” Jos said. “That won’t bring us anything. We won’t even be going to New York, even although Lynsey offered us the use of her apartment there. We became real friends. Too bad they had to come out now with such hard photos.”
Addario, meanwhile, has not responded to the Vervoort family’s complaints, but she does touch on the difficult moral choice in her own article.
“I don’t know whether I crossed the lines of journalism by becoming close to my subject or who decides when it is O.K. for a “subject” to become a friend. I don’t think my ability to tell Marieke’s story has been compromised by our closeness, and I wouldn’t know any other way to tell the story of someone’s death by choice. I needed to get to know Marieke and her family to understand how painful and difficult life could be, to decide to end it.”
The Brussels Times