By Catarina Demony
MADRID (Reuters) - Spanish disability rights activist Cristina Paredero grew up feeling different and was diagnosed with a form of autism aged 18. She says her parents told her she should never have children and pressed her into agreeing to get sterilised.
Paredero, who is now 31 and angry with her parents over what happened, helped draft a 2020 law banning forced or coerced sterilisation in Spain and is now fighting to outlaw the practice across the European Union (EU).
"All women have the right to decide for themselves," she told Reuters.
Forced sterilisation is a surgical procedure that removes a person's capacity to have children without consent, or under undue pressure. At the time of Paredero's operation, there was no law in Spain banning it.
Paredero says she cut ties with her parents a decade ago and Reuters has not been able to locate them for comment.
She now spends her time talking to groups of people with disabilities across Spain and adding her voice to calls from the likes of the Brussels-based European Disability Forum (EDF (EPA:EDF)) for broader action.
For the moment, there is no EU-wide policy on the issue and it is a matter for individual governments.
Forced sterilisation remains legal or not explicitly banned in 12 of the EU's 27 members - Bulgaria, Cyprus, Croatia, Denmark, Estonia, Hungary, Finland, Latvia, Lithuania, Portugal, Slovakia and the Czech Republic, according to the EDF.
Conducted by a special rapporteur, a 2017 U.N. report on sexual and reproductive health said the practice represented a widespread human rights violation and, despite limited data, it continued to be prevalent, with women and girls with disabilities the most affected.
Health officials and campaigners say parents or guardians often feel they are acting in the best interests of the person having the procedure.
According to Portugal's national medical code of ethics, sterilisations should only be carried out on minors or on people with disabilities "after a duly substantiated request in order to avoid serious risks to life or health."
"It often comes from a place of protection, the wrong idea they are protecting their daughters from sexual abuse," said Campos Pinto, who coordinates a disability rights watchdog, the ODDH, in Portugal.
"But, on the contrary, a sterilised person is even more vulnerable to abuse... It often has to do with parents' anxieties and not with the people with disabilities themselves," added Campos Pinto, who believes the practice should be banned in Portugal.
Doctors often comply with the parents or legal guardian's request as they think people with disabilities are less capable of making their own decisions, she added.
'MANIPULATED'
The EDF says it is planning to take its fight to each of the 12 EU states that do not explicitly ban the procedure, by organising campaigns with local NGOs.
It is also pressing to have it stopped across the bloc in one move, and the EDF campaigned to get it included in a recent EU directive against violence against women.
The directive agreed in February recognised forced sterilisation as a form of such violence but stopped short of ordering member states to incorporate a ban on the procedure into their legal systems.
Asked why the ban was not included in the directive, a European Commission official, who asked not to be named, said there was no "legal basis" to regulate such a bloc-wide measure.
The same official said the Commission was looking to include forced sterilisation as a "harmful practice" in a upcoming recommendation to complement the directive. It is expected to be adopted this year.
Lawyers contracted by the EDF to advise on the directive, said the EU did have the power to outlaw criminal activities that crossed borders, and that it would fall under the bloc's competence to act if women are forcibly sterilised as a contraceptive method to be sex trafficked.
They added the EU had signed the Istanbul Convention, which bans forced sterilisation, and including its criminalisation in the directive would have aligned with its intention to fully ratify it.
"FGM (female genital mutilation) is rightly covered by the proposed new law, but why on earth isn't forced sterilisation?" said barrister Annahita Morati, from London-based law firm One Pump Court, which advised the EDF.
Their arguments have also found some support among EU lawmakers.
"It's horrifying we live in a time, which we call modern, but we still see countries forcefully sterilising people," said Evin Incir, a Swedish member of the European Parliament, from the Socialists and Democrats group.
Irish MEP Frances Fitzgerald, from the centre-right European People's Party, said she hoped the upcoming recommendation would address forced sterilisation "more comprehensively".
Beyond the politics and EU procedure, there is always a painful personal story, Paredero said.
For her, she said the crisis point came when she started a relationship. Her parents intervened, she said, and she eventually agreed to have the procedure.
"I was not aware of the extent to which I had been manipulated when I made the decision," she said. "I didn't make it freely."