The parliamentary speaker of Unidas Podemos – his team on his behalf – offered me this interview weeks ago, on the occasion of the publication of his political but above all personal memoir, Memoirs of a Fighter Pilot (Arpa). In the book, Pablo Echenique (Rosario, Argentina, 44 years old) speaks openly about his disability and its physical and emotional consequences in his daily life and the idea was to talk about it. But the current rules. Finally, on Thursday, in the midst of the turmoil between the partners in the coalition government, we spoke about the reform of the yes-is-yes law. The meeting takes place in his office in Congress, a strangely open space with no furniture, adapted to his needs, and with the presence of two women from his team as witnesses. Up close, his lordship’s fragility is striking, becoming one with the wheelchair that supports him. His marriage – to Mariale, also a scientist, whom he met while working at the University of Zaragoza – shines in the ring finger of his loose right hand, which he uses to control his laptop and his electric chair, the complements and accessories of which he designs himself and you have it made to measure in your trusted orthopedic clinic in the Aragonese capital. With a big head, he admits, nobody wins.
Questions. What would you say to a victim whose sentence was reduced by your yes-is-yes law?
Answer. That unfortunately in Spain there are still judges who do not understand feminist advances and are even capable of misapplying a law and that work must be done to prevent this, because it is very serious.
Q Didn’t they know this could happen?
R No, neither we nor anyone else. We listened to the report of the General Council of the Judiciary. What happened surprised many people.
Q Will they apologize for not anticipating this possibility?
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R What we’re going to do is work, but we can’t control the hand of a judge making a sentence.
Q Why is he telling us about his life at this point? Pure election campaign or to sell us your book?
R Because too many people have already told it without as much information as I have and I think I have a strange perspective: I was born in Argentina, came to Spain when I was 13, I have a large disability and I am normal, I have the front line of the policy achieved. I think all of this put together is hard to understand unless you experience it yourself and I wanted to tell you.
Q Why did you ask to be interviewed by EL PAÍS as you believe you are part of the media power?
R In all media there is at least one good, decent journalist, in some even a few more.
Q will you spare my life
R Not at all. I have a very good relationship with the infantry of journalism, which seems to me a very dignified profession and very useful for democracy. Another thing is ownership of the media.
Q In the book, he did a good job of matching his friend and former leader Pablo Iglesias. Take out three defects.
R That he said well on the Buenismo radio show that I was a wild tweeter and he lied because he loves the way I tweet and I usually show him a lot of tweets before I do, that means he doesn’t always tell the truth . That what he thinks is sometimes too obvious, and that’s not good in politics. AND…
Q …AND?
R That I love Pablo very much and it’s hard to see faults in the one you love.
Q However, he portrays his former colleague in Podemos Íñigo Errejón as Judas.
R No, that’s too strong. Íñigo is a person who made a mistake in Podemos. He did not accept not commanding when there was another strategic direction, and he did things that should not be done when one is not commanding in a party.
Q How are we doing with self-worth?
R I don’t have it badly and I don’t have false humility either, which seems like bullshit to me, but at the same time, believing more than you are can make you an idiot. So I treat myself to remedies of humility. Now I’m learning a lot from Irene Montero and Ione Belarra.
Q learn this?
R Resilience, strategic clarity in difficult decisions and negotiating power.
Q And the stubbornness of a gray mule?
R Also. In Aragon they call us Bigheads and I don’t think it’s a lack if you think you’re right.
Q Well, take three mistakes yourself.
R I’ll be terse in my answers because it took me a long time to get there and I don’t like wasting time; very exhausting in what I think and maybe I find it difficult to express my feelings.
Q Is that why he tweets wildly?
R Tweets are politics. Sometimes I’ve regretted it, but most have thought about it. It makes me want a nobody like me to be in a place where they can say things that normally nobody can say.
Q He has an IQ of 150. Do you think that makes up for his physical disability?
R That’s not unusual for people like me. If you cannot cultivate the feet, cultivate the head. I think it’s more than just genetics.
Q In the chapter Can’t wipe your ass in his book, he talks humorously but rigorously about his physical limitations. Has something been silent?
R don’t believe The line of my modesty is to tell what has to do with other people. I laugh at myself, but this book also makes me dizzy. I undressed like never before. I tell very intimate episodes. From the way they shower me, how they dress me, to my shit.
Q A court convicted him of failing to pay social security to his caregiver. Did you pay what you owed?
R I have paid. I did not go to the Supreme Court because my case is unique in all of Spain. The administration allowed and even advised not to pay social security if you were hiring a self-employed person.
Q Do you have the same caretaker as then?
R No, I change a lot and not for me. They go. It’s hard to take care of and it’s hard to take care of. It’s hard work and it doesn’t pay well.
Q How much do you pay yours?
R A little more than minimum wage. I can pay for one or eight hours with my salary as a deputy. My wife takes care of me the rest of the time. Personal care for a severely disabled person like me costs 3,000 euros a month. There is much to do.
Q What if a person with ALS couldn’t live after a tracheostomy if they couldn’t pay for their care?
R A shame. A beastly injustice. Personal help for the severely disabled at the expense of public funds is one of the things that a decent country has to do. And a lot is missing.
Q Well, the Minister for Social Rights, Ione Belarra, is yours.
R Much progress has been made under his mandate, but for that we would need to raise taxes on the rich, and the PSOE has increased them only slightly. But I don’t think even we could have done it alone in a single legislature. The way is long.
Echenique, during the interview.Bernardo Pérez
Q Did you get angry at the world when you realized the irreversibility of your disability?
R Yes, I’ve been through dark stages. Puberty isn’t easy for anyone, especially under these circumstances. You get mad at the world, your skin gets very tough, but the worst part was thinking for a long time that nobody would ever love me. But it happened and it’s the best thing that’s happened to me in my life. It also saved my socializing. Others support you.
Q In the book it says that the Zaragoza night burned. How many cups fit in this body?
R I’m 450 pounds with the chair, but I’m under 40 and have pushed my limits.
Q Sex, drugs, rock’n’roll?
R sex, not much; Drugs, not hard and rock and roll, yes, but I’ve had my bad days too. At Podemos we say that Monedero doesn’t age physically and I don’t age mentally. I’m not an old man.
Q Speaking of sex…
R I’ll keep it to myself. The book is not expensive enough to count.
Q do you dream that you are leaving
R Yes, and that I walk. It used to be terrible, now I’m used to it. The other day I dreamed that I was flying skipping between mountain ranges.
Q Was he disguised as Spiderman?
R Well I don’t know, I wasn’t paying attention.
Q Which size do you wear?
R From above the XS and I wear women’s shoes because I wear 35. I don’t wear panties. They rub against me, they annoy me, they increase the annoyance when it comes to going to the bathroom, making me feel freer.
Q Belarra goes without a bra.
R Exactly. I go without underwear and Ione no brawe have the same right [ríe como fatigado].
Q Do you get very tired?
R Less than it seems, but yeah, I’m tired at the end of the day. I have dinner at ten, turn on a show and turn off, unless there’s trouble, and sometimes there’s trouble.
Q How long does the battery last?
R With the electric chair I have a range of 30 kilometers when the battery is new. With the new batteries, it drives 13 kilometers per hour. I bought the best: 8,000 euros. They are very expensive, but the administration subsidizes some of them. This part is the best. Behind closed doors, attention to the disabled can be greatly improved, but behind closed doors in Spain we are not that bad in comparison. Only London is better than Madrid, for example. I would like to go to Africa or Japan, but I don’t dare at the moment.
Q In other words, he is privileged.
R I think so. I am a lucky guy.
United We Can Speaker of Parliament Pablo Echenique was born with Spinal Muscular Atrophy – “SMA for friends,” as he jokes himself – a condition that currently accounts for 90% disability. From detailing his characteristics to the consequences in his life, Echenique elaborates on his recently published autobiography, Memoirs of a combat pilot. Born to divorced Argentinian parents, Echenique came to Spain at the age of 13. He settled in Zaragoza, where he attended high school and obtained a doctorate in physics. With an IQ of 150, he considered himself a “political idiot” who joined Ciudadanos. Until his disability, the eruption of 15-M and the advent of Podemos made him “fall off the chair” and start his career in the elections. He doesn’t hide the fact that this leads him to “hit” from his power chair in the middle of Congress. He has not yet managed to get a seat in the plenary hall.
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