Nobody could have guessed that an informal conversation in a Telegram group at the end of the year would sow the seed for Mad Pride Day or Día del Orgullo Loco in Spain. But “why not?” asked some of the friends who had created the forum to share their experiences in associations for people with mental disorders.
Soon family members, activists, and mutual support groups joined in and within a few weeks they had a logo, informative letters for other groups to encourage them to take part in the day and a common slogan: 'Pride Cures'.
“We wanted to reappropriate a word [loco] which is often used in a derogatory way, to give it a new sense, away from negative connotations,” said sources at the organisation. Now 20 May 2018 will remain in the minds of about 20 organisations and thousands of people who, affected by a mental illness, decided to “come out of the closet” on that day and face a society “which marginalises and isolates us”.
“We are not proud of our suffering, but we are proud of how we are. We just want our space and not to be looked at like oddballs,” said Rodolfo García, president of the En Primera Persona association and organiser of the Mad Pride action in Andalucía.
However, coming out of a closet which is as discriminatory, closed and asphyxiating as homosexuality was in its day, has not been easy. “There is a risk involved, which is that people will label us and reject us, but we have to face that so things will be easier for those who come afterwards. Somebody always has to take the first step and show that we do matter. It remains to be seen whether or not they accept us as we are, with our differences,” explained García.
At present, eight out of every ten people with mental health problems in Spain are unemployed. “Having a proper, motivating job is beneficial for anybody, but for those with mental health problems it is also essential for their recovery and independence,” said Ana Lancho, president of the Madrid association La Barandilla.
For 20 years she has run the Lajman day hospital, a psycho-rehabilitation centre, and two years ago she started a project using radio as a therapeutic tool for people who have difficulties in developing a social life; this has repercussions on their quality of life and self-esteem. They often feel cornered, pointed at and undervalued, and that isolates them and closes them into their own world, which they find it hard to leave.
That was the case with Paqui, who was diagnosed with paranoid schizophrenia and depression 25 years ago. Today she collaborates with the radio station started by La Barandilla association and she only has words of gratitude for them.
“The relationship with my parents wasn't good, but they realised that something wasn't right when I told them I was having religious visions,” she says. That is when Paqui's uphill struggle began: when she found out she had schizophrenia she gave up singing in a choir, cut off all contact with her friends, telling them that as far as they were concerned she was dead, spent hours sleeping at home because of her treatment and began to feel rejected by people, especially when they crossed the road to avoid her because they feared a violent reaction.
“Sometimes, the way you are treated causes more damage than the illness itself,” said Ana Lancho. Today, at 51, Paqui is a woman who is contagiously cheerful at the other end of the phone and she is thinking of joining a new choir.
With the celebration of Mad Pride Day, with its demonstrations, workshops and declarations read out in the main cities, Spain joined a movement that started in Canada in 1993. In that year, a group of people affected by mental disorders went out into the streets to denounce the prejudices and discrimination they suffered from other people, who didn't want to coexist with them in the Parkdale district of Toronto.
Their message struck a chord in other countries, including the USA, South Africa, Ghana, Australia, Brazil, UK, France, Italy, Belgium and Germany.
Asturias was a pioneer in Spain in celebrating Mad Pride Day in 2010, although that year they called it El Escandalazo, alluding to the evaluation by the World Health Organisation (WHO) of the mental health services in that region, “but whose recommendations were not adopted”, said Tomás Corominas, a member of the Hierbabuena mental health association.
In his opinion, it was difficult for Mad Pride Day to take off in Spain because traditionally “families and professionals have stopped us participating and being represented”. “Many of those affected stigmatise themselves. Sometimes, we do ourselves no favours by having a confused image of all this,” said Corominas.
The organisers of this movement are seeking to change society's perception of people who suffer from mental disorders.
“They are stigmatised by ignorance, media cowardice and film scripts. People often think that they are violent but they're quite the opposite, they are victims of society,” said Nel González, president of the Spanish Mental Health Confederation.
However this organisation, which represents more than 300 associations and 47,000 members all over the country, disassociated itself from Mad Pride Day because it considered it too controversial.
“Not everyone is proud of their illness and that obliged us to take an eclectic position,” said González in justification.
But beyond the social stigma of those affected by a mental disorder, of whom there are more than a million in Spain (half of them serious cases), this group is claiming the right for them to make decisions about their own treatments and to be respected.
“We cannot tolerate being tied to beds in hospitals, nor being admitted against our will, nor being filled with drugs to tranquilise us; it is time for psycho-social treatment to become an alternative to drugs, because we're not just a symptom and a diagnosis. That's the only way society will learn to know us and accept us,” said Rodolfo García.
The Spanish Mental Health Confederation has also recently contacted the office of the UN's High Commissioner for Human Rights to denounce the breaching of human rights in the psychiatry sector.
“At medical centres they are still applying protocols which need to be abolished, such as forced immobilisation (being locked into rooms), blackmail and chemical containment (abuse of medication). It is not acceptable that, if they have a crisis, the patient has to leave their home in handcuffs to be taken to hospital; it is traumatic and a very injurious practice for the patient,” said Nel González.
Closure of asylums
The Health Law of 1986 resulted in the definitive closure of the so-called 'manicomios', or asylums. Men and women who until then had been held in inhumane conditions were considered citizens with the right to receive suitable treatment, as if they were suffering from any other type of illness.
“Closing those prisons was a liberation and it gave rise to a later movement to respond to the needs of thousands of sick people who were able to coexist in society,” explained González.
It was in a mental health association in Zaragoza that José Manuel Dolader sought answers to a tragic event which marked his family forever. Now, 12 years after his nephew killed his grandmother (José Manuel's mother) after a psychotic episode, they are still unable to talk about the matter.
“Even though he had been diagnosed with schizophrenia my sister refused to see the problem and consented to my nephew not taking medication. That is all that could explain what he did, because he loved his grandmother,” said Dolader.
That family tragedy led him to becoming personally involved with this social reality and collaborate with the Tú Decides and La Barandilla associations, which he now runs. He believes these patients should service their sentence (his nephew spent five years in jail) “but that they should be given special consideration, because my nephew didn't know what he was doing”.
Scientific advances in the field of psychiatry have been very important, especially in the “decade of the brain”, said Julio Bobes, president of the Spanish Psychiatry Society. “The investment in research between 1990 and 2000 led to major advances in personalised psychiatry, with the discovery of genetic data associated with serious mental conditions and the possibility of making predictions and knowing when medication would be most effective through genetic markers,” he explained.
Nevertheless, a major concern for specialists in this field nowadays is the increase in drug consumption, especially psycho-stimulants like amphetamines, cocaine and cannabis.
“The problem we have is that patients with serious disorders (schizophrenia, bipolar disorder and degenerative conditions) who take drugs make their illness worse,” said Bobes.
This psychiatrist also warns of the danger of young people consuming these substances, because it precipitates the appearance of serious mental illness (which has its origin in a genetic alteration), and the prognoses for the illnesses are worsened by contact with drugs.
The World Health Organisation forecasts that one in every four people will suffer from mental illness during their life. At present in Spain, more than nine per cent of the population already lives with one, and depression is the most common.
In recent years psychiatrists have seen an increase in consultations for problems associated with everyday life, such as anxiety, stress, depression, adaptive tensions, or setbacks in their working or family life.
“Now, half of a psychiatrist's working day is spent seeing patients with depression, although most are slight or moderate cases,” said Bobes. However, he gave the following warning: “Depression will be the most incapacitating mental disorder in the next decade, given the prevalence of patients at present.”