Source (of inspiration): “Exit Spaink – my very last piece”https://www.spaink.net/2026/05/08/exit-spaink/



KARIN SPAINK

20 December 1957 — 8 May 2026

Writer · Journalist · Feminist · Free-Speech Pioneer · Friend

“I write, therefore I am.” — the motto that headed her website for three decades, and a fair summary of how she lived: thinking on the page, in public, with everyone invited to argue back.

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A Life Lived Out Loud

On the morning of Friday 8 May 2026, in her own bed in Amsterdam, surrounded by six of her closest friends, Karin Spaink died on her own terms. She was 68. She had multiple sclerosis, and after a severe attack in May 2023 she had been losing ground steadily; rather than wait to lose her independence, she chose euthanasia and spent more than a year preparing — practically, legally, and above all conversationally — for the moment. She wrote her own obituary, scheduled it to publish at 15:00 that afternoon under the title “Exit Spaink — mijn allerlaatste stukje” (”Exit Spaink — my very last little piece”), and signed off the way she had lived: with clarity, mischief, and an instruction to those left behind to keep going.

She leaves behind, by her own count, eighteen “bonus years” past the fifty she had never expected to see; more than a thousand columns; twelve books; a body of jurisprudence; a co-founded civil-rights organisation; an archive of essays and lectures she has bequeathed to the public domain; a website that will stay live for ten more years; her brain and spinal cord (donated to the Netherlands Brain Bank for MS research); and a community of friends, colleagues and strangers who will need a long time to fill the Karin-shaped hole she warned us about.

What follows is a survey of what she did, why it mattered, and what we might take with us. It is drawn from her own writing, from the obituaries that appeared within hours of her death, and from the long public record of a woman who never confused being polite with being kind.

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Roots: Amsterdam, Books, and a Stubborn Body

Karin Spaink was born in Amsterdam on 20 December 1957. She trained as a secondary-school English teacher between 1975 and 1981, then read sociology at the University of Amsterdam from 1981 to 1984. In 1986 she retrained as a computer programmer at Volmac and Fokker — work she did from 1988 to 1990 — while moonlighting for the Pacifist Socialist Party. That same year, 1986, she received the diagnosis that would shadow the rest of her life: multiple sclerosis.

She was 28. She had already, between 19 and 25, fought her way out of anorexia and bulimia. The MS was the first installment in what she would later list, in her farewell, as a long account with her own body: pre-cancerous cervical changes (1994); a brain hemorrhage that briefly carried her into the dark (1995); breast cancer (2006). She survived all of them, and from each she made writing — sometimes books, sometimes columns, always public.

The body was her first and most enduring subject. It was also, she came to think, a political one. The proposition that “the personal is political” — handed down from second-wave feminism — became, in her hands, something more particular: that the body, the diagnosis, the wheelchair, the missing breast, the eventual refusal of further suffering, all belonged in the public conversation, with the curtain pulled back.

The Writing Life

Het Parool: a column for thirty years

From 1992 to 2022, Karin Spaink wrote a regular column for the Amsterdam daily Het Parool — more than a thousand columns over three decades. She was, AT5 noted on her death, “on AT5 for years” because her opinions were everywhere and unmistakably her own. Subjects ranged from privacy, sexual diversity and feminism to her own illnesses, the obstinacy of plants, the absurdities of policy, and the quiet politics of growing old in a body that won’t cooperate.

De Groene Amsterdammer, NRC, de Volkskrant

She wrote for De Groene Amsterdammer (1994–2003) and contributed to NRC and de Volkskrant. Her essays were collected and re-collected, the best of them gathered into volumes that mapped the seams where her preoccupations met: technology and the body, sex and law, illness and language, religion and power.

Follow the Money: “the strictest copy desk in the Netherlands”

In May 2018, at sixty, she joined the investigative journalism platform Follow the Money. She quickly became chief copy editor (chef eindredactie) and built what she liked to boast was “the strictest copy desk in the Netherlands.” Colleagues spoke of being “gespainkt” — “lovingly but mercilessly corrected.” Her chief editor Harry Lensink wrote in his in-memoriam that she was the “godmother” of FTM: sharp, loving, uncompromising, with an enormous feeling for language and justice. The new meeting room at the FTM offices was named the Spaink-zaal in her honour while she was still alive — and after her forced retirement in April 2025, when MS finally took the work from her, she was profiled in farewell as having lived “with imagination, humour, passion, character, and above all impact.”

Books

Twelve books, spanning four decades. Among them:

Her website, spaink.net, has carried much of this work for free for almost three decades. In her farewell she announced that the copyright on all of her published columns, articles, lectures, essays, translations and books has been bequeathed to the public domain. “Doe daar vooral je eigen ding mee” — please, by all means, do your own thing with it.

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Against the Mind Mob: Refusing to Be Blamed for Her Own Body

Spaink first reached a national audience in the early 1990s by going to war with a particular strain of New Age writing: Louise Hay, Bernie Siegel, Thorwald Dethlefsen and their imitators, who taught — in essence — that illness was the body’s expression of an unhealed self, that cancer was anger turned inward, that MS was a refusal to move forward in life. Spaink had MS. She had not arranged it through a deficit of positive thinking. The suggestion that her disease was “all in her mind” she found, accurately, insulting.

Het strafbare lichaam — “The Penal Body” — was her answer. The book argued that this strain of mysticism functioned as a moral court: it sentenced sick people to guilt for their own suffering, and acquitted the world (and medicine, and society, and luck) of any role. She invented two words for the offence: kwakdenken — “quack thinking” — and orenmaffia, “mind mob,” from the Dutch idiom that something is “all between the ears.” The dictionary picked them up. The phrase “all in your head” has been on the defensive in Dutch ever since.

It was a recognisably Spaink performance: a personal injury, taken seriously, traced upward into a public argument, written with a glint and a knife.

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Scientology vs. Spaink: Ten Years, and the Internet Was Better for It

In 1995 the Church of Scientology decided to remove from the internet what it called copyright infringements and trade secrets — in practice, the Fishman Affidavit, a US court filing that exposed the church’s higher “OT” doctrines. Spaink was one of about a hundred Dutch people who put the affidavit on her homepage in protest. The church responded by raiding the offices of the internet provider XS4ALL, seizing servers, and suing Spaink, XS4ALL and twenty other Dutch ISPs for copyright infringement.

The case ran for ten years. Spaink rewrote her page into a piece of scholarly criticism — quoting the documents, but only as much as Dutch quotation law allowed — while challenging the church to prove it actually held the copyrights it claimed. The lower court, in 1999, split the difference. Spaink appealed. In September 2003 the Court of Appeal in The Hague ruled comprehensively in her favour and in favour of the ISPs. The judges held that European law permits quotation in service of a higher goal, and — in a passage that has been quoted ever since — found it proven that Scientology is an organisation “that does not shy away from the rejection of democratic values” and uses the secrecy of its doctrines to exercise power over its members.

The church appealed to the Dutch Supreme Court. In July 2005, days before the ruling, Scientology withdrew. The Supreme Court accepted the withdrawal and dismissed the claims. Because the appeal had been withdrawn rather than exhausted, no further European recourse remained.

What Spaink and her co-defendants left behind in Dutch jurisprudence is enormous and concrete:

She continued to picket the church for years afterwards, alongside Project Chanology. She would later, in interviews, refuse to treat any of it as heroism. It was just what she did — and what she thought freedom of speech meant when you stopped saying it on a poster and started saying it under subpoena.

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Bits of Freedom: Inventing Digital Civil Rights in the Netherlands

In 1999, with Felipe Rodriquez (then director of XS4ALL) and Maurice Wessling, Spaink co-founded Bits of Freedom: a Dutch civil-liberties organisation for the internet age. The premise — that internet users have rights, including civil rights — was, she liked to point out, novel at the time. Bits of Freedom argued, lobbied, and embarrassed the powerful into taking it seriously.

From the start, Spaink insisted Bits of Freedom show up in evening dress. The first Big Brother Awards, held at De Balie in Amsterdam in 2002, were partly her doing: an ironic prize for the country’s worst privacy violators, modelled on Orwell, designed for the cameras. She chaired the awards ten times. In 2007, in a piece of typically Spaink-ish theatre, the audience itself was given the prize — to remind people that mass surveillance is also something the surveilled allow. They were issued a glass of cava as compensation.

Through Bits of Freedom and the Big Brother Awards, the Netherlands learned to talk about: cookies, tracking, data hygiene, retention obligations, online surveillance, the Albert Heijn fingerprint-payment plan that died of public ridicule, copyright over-reach, encryption, intermediary liability, and — eventually — algorithmic decision-making. SyRI, the welfare-fraud risk system that won a Big Brother Award in 2019 and was later struck down in the Dutch courts; the toeslagenaffaire, the childcare-benefits scandal that destroyed thousands of families; the privacy implications of the Electronic Patient Record — Bits of Freedom was a serious player in all of them, and its DNA is Spaink’s.

Bits of Freedom was also, she insisted, three weeks of lobbying away from bankruptcy at any time in its first decade. It stopped operating in 2006 — partly because Spaink had been diagnosed with breast cancer just as she was preparing a rescue plan — and was restarted in 2009 by Ot van Daalen. It has been continuous and growing ever since. On the day Spaink died, its director Evelyn Austin wrote: “Her engagement, sharpness, headstrong spirit and creativity were an inspiration to the very last moment. We are tremendously grateful to Karin for the example she set, and for everything she meant to Bits of Freedom.”

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More Fronts Than One Career Should Hold

Electronic patient records and hospital security

In 2005 she became chief editor of a book series called The Next Ten Years. The first volume — Medische Geheimen, “Medical Secrets” — exposed the Dutch plan to introduce a national Electronic Patient Record, accompanied by a working demonstration of how easily two major hospitals could be hacked. The book triggered a debate in parliament. A few months later, the national rollout of the EPR was stalled by the Department of Health, citing her research. The Dutch national health-information infrastructure that did eventually emerge looks the way it does, in part, because she made the original plan unworkable.

XS4ALL and Hack-Tic: writing the history of the Dutch internet

From 2005 onwards she worked on a book about the Dutch civilian internet — about Hack-Tic, the legendary hacker magazine of the late 1980s, and XS4ALL, the provider that grew out of it. The project covered roughly 1989 to 2000 and helped fix in public memory the fact that the Dutch internet was, at the start, a weird and political and explicitly libertarian project, run by people who thought connectivity was a civic right.

Publeaks and whistleblowers

In 2013 Spaink joined the Committee of Recommendation of Publeaks, the Dutch foundation that lets sources leak securely to journalists using GlobaLeaks software. It launched on 9 September 2013. She was the kind of recommender whose name on a list meant people took the list seriously.

The OSCE and the Freedom of the Media bureau

From 2001 to 2004 she advised the OSCE’s Freedom of the Media bureau on free expression and the internet — a role that placed her, briefly, somewhere near the table at which the post-1989 European architecture of media freedom was being argued out.

Pink Ribbon, before it was fashionable to question Pink Ribbon

She criticised the Pink Ribbon breast-cancer foundation before it became fashionable to do so. Her investigation of its finances, on her own admission, drove sponsors away. She had had breast cancer herself, in 2006; she was photographed for the magazine Opzij with one breast surgically absent, looking at the camera. The argument, again, was that telling the truth about real bodies was more useful — and more respectful of women — than pink decoration.

The Right-to-Die movement and the suicide forum

Spaink was a long-standing voice in the Dutch right-to-die movement. She hosted, controversially, a website that offered factual information about methods of suicide, on the principle that people considering it deserve accurate information rather than mystified silence. The site became internationally newsworthy in October 2005, when two strangers from the UK met on a related newsgroup and entered a suicide pact. The case was difficult for her. She did not, in response, decide that the underlying principle had been wrong.

Free speech where she did not personally agree

She publicly opposed the takedown of the American “Nuremberg Files” anti-abortion website — a site that listed names, addresses and photos of abortion providers along with calls for violence — on free-speech grounds, while making clear she was herself entirely pro-choice. She thought freedom of expression had to mean more than freedom for the speech you happened to like, or it would not, in the end, mean anything at all.

Spam, anti-spam, and the unglamorous infrastructure of decency online

She sat on the board of Spamvrij.nl. Most of the work was tedious. She did it anyway.

The Canta Ballet

From 1994 onwards Spaink drove a Canta — the small Dutch enclosed mobility vehicle for disabled people. She loved it. She co-conceived the Canta Ballet, in which roughly 60 Cantas and 50 dancers from the Dutch National Ballet performed together. She drove the lead Canta — the prima Canta — herself. It is the kind of detail that, in someone else’s life, would be the strangest thing they ever did.

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Awards and Recognition

On the day of her death, the mayor of Amsterdam, Femke Halsema, posted: “Amsterdam will miss her, and so will I.” She praised Spaink’s “sparkling, critical mind” and her ability to be “undiluted, radical, and activist when it was necessary, and tempering and funny when it could be. She was impressive, but above all just very fun.”

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A Self-Organised Death

Spaink’s farewell post on her own website is one of the most striking things she ever wrote — and that is saying something. The text was drafted in February and March 2026 and scheduled to publish at 15:00 on 8 May, by which time, as she put it, “if everything has gone according to plan, I died this morning.” By 19:00 the same day it had over 7,000 readers and a comment thread that read like a candlelit room.

She was unafraid of death — a brain hemorrhage in 1995, in which she briefly slipped into what she called “a commanding black-velvet hole, in which no ‘I’ existed,” had taken care of that — but she was afraid of dependence. “From toddler-age onwards,” her mother liked to say, “she would insist: ‘I can do it myself!’” After two-and-a-half years of intensive physiotherapy that did nothing to slow the disease, after stumbling around her own house clinging to furniture, after her plants — her hoyas and staghorn ferns, the company of years — had to be moved to the Amsterdam Hortus because she could no longer water them, she decided: rather than wait to lose more, she would choose.

What is most characteristic, though, is what she did with the year of preparation. From early 2025 she sat down, one by one, with the people she loved. From January 2026 onwards she widened the circle. She organised weekly drinks at Brouwerij ‘t IJ — fourteen of them in the end — to which she invited the friends she wanted to see one last time. She wanted, she wrote, to make her death “manageable” for them, even though she could not take their grief away. She refused to vanish into a private decision. “The personal is also political,” she wrote, in this version of the slogan: deciding the grounds for one’s own death, and discussing them, and listening to other people’s pain about them, is finally also a public matter, and we don’t talk about it nearly enough.

She did the practical work too: revised her will, settled her finances, agreed everything with the Expertisecentrum Euthanasie, decided who would receive what, drew up the address list for the death announcement, even thought through her own headstone. She donated her brain and spinal cord to the Netherlands Brain Bank, which is researching MS and PIRA — “progression independent of relapse activity,” the smouldering disease she suspected she had been living with since 2023. (She used the announcement to ask healthy people to register as brain donors too. Even her death notice was a public-information campaign.)

On 8 May 2026 she died in the company of her six getrouwen — her closest — Tanja, Caroline, Ruud, Peter, Eric, and Luuk. Without help, she wrote, she would have gone alone with pills she had had ready for years; instead, she died in love.

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Through-Lines: What She Was Always Doing

It would be easy, looking at the list above, to see a scattershot life. It wasn’t. Look closely and a few obsessions run through everything she touched.

1. The body, taken seriously.

From Aan hartstocht geen gebrek to Vallende vrouw to her cancer blog to the Opzij portrait after her mastectomy to her own death announcement, Spaink refused to let her body be a private embarrassment. She insisted that disabled bodies have erotic lives, that sick bodies are not morally responsible for their illnesses, that female bodies after surgery are still bodies, that dying bodies belong to the people who live in them.

2. Speech, even uncomfortable speech.

Spaink was a free-speech absolutist who actually accepted what that costs. She defended the right of an anti-abortion site she despised to remain online; she fought a transnational church for ten years to keep its doctrines quotable; she hosted a website on suicide methods because she thought adults deserved information. The principle, in each case, was the same: the answer to bad speech is more speech, and the alternative is a world where the powerful decide what we may know.

3. Power, especially institutional and technological.

New Age publishers selling guilt to sick people. The Church of Scientology, suing critics into bankruptcy. Hospitals leaving patient data on unencrypted servers. Pink Ribbon, raising money on women’s bodies. The Belastingdienst, profiling parents into ruin. Big Tech, hoovering up our communications. She had a nose for the mismatch between an institution’s public face and its actual incentives, and she could write the article that closed the gap.

4. Solidarity, expressed practically.

She co-founded organisations. She sat on boards. She edited other people’s prose, brutally and devotedly. She left her copyright to the public domain. She organised the room she was about to leave so the people in it would have somewhere to go. She made things; then she made sure the things would survive her.

5. Pleasure, kept stubbornly visible.

Black and red clothes; Einstürzende Neubauten on the speakers; Palm beer; vampire fiction; houseplants; the cat Nelis; bitterballen at Brouwerij ‘t IJ; a Canta Ballet. She refused, even at the end, to have only a serious life. Her colleagues wrote in farewell that she had lived “with imagination, with humour, with passion, with character, and above all with impact.” The first three are not separable from the last.

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How To Borrow From Her

Karin Spaink’s life is unrepeatable, which is not the same as inimitable. The point of an example is not that you copy it; the point is that you take what you can use. A few of the things on offer:

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Her Last Words to Us

She closed her own farewell with two sentences that have already been quoted everywhere they needed to be quoted, and that read, in English, like this:

I wish you, above all, much love, courage, wisdom, and meaningful resistance in the harsh times now coming — politically, ecologically, and in the matter of fake news, surveillance and AI. Know, in all of it, that you never have to give up (or endure) more than you yourself want to or can bear. You are always allowed to set your own limits, and to live by them — or to die for them.

She had earned the right to those sentences slowly, over decades, in court rooms and hospital wards and editorial meetings and the small unglamorous arguments about an em-dash. They are not a slogan. They are a summary.

Karin: thank you. We will try.

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A Note on Sources

This memorial draws principally on Karin Spaink’s own farewell text, “Exit Spaink — mijn allerlaatste stukje” (spaink.net, 8 May 2026); on her CV at spaink.net/about; on Wikipedia’s “Karin Spaink” entry; on the in-memoriam pieces published on 8 May 2026 by Bits of Freedom (Evelyn Austin) and Follow the Money (Harry Lensink); on the obituaries published the same day by AT5, NOS, NH Nieuws, BNNVARA’s Joop, and Dead-People.com; on the Bits of Freedom 20-year-history interview with Spaink (January 2020); and on Spaink’s own column “Help uzelf!” (Het Parool, 20 November 2012) on the founding of Bits of Freedom. Quotations from Spaink’s own writing have been translated from the Dutch where appropriate; her last sentences are reproduced here in English in the spirit of her own bequest of her work to the public domain.

spaink.net will remain online for ten more years. Read her there. She gave you permission.

— Rest in power, Spaink —