“The vacancies are not a privilege we have, they are right”
This is an interview of Juan Larreta, a 52 year old disabled man with a multiple sclerosis diagnosis. Born in Pamplona, Navarre, Spain, he continues to live there and tries to make a change in it too. Now retired, since he quit his office job in Marketing in a multinational 2 years ago due to the struggles of his illness, he continues to work in the association he created, Okupas Motorizados. He has brought attention to the issues they face as disabled, especially how people occupy their special parking places mindlessly and, at the moment, he and his colleagues are still working with the government of Navarre to work on the necessary legislation.
Done by Meriem Rouidjali Adoul, a 16 years old teen from Pamplona, who studies in I.E.S Padre Moret Irubide in Navarre.
“We cannot stop being tolerant, it makes life easier for others and what is more beautiful than that.”
Who is Juan Larreta?
Juan Larreta was born in Pamplona, is 52 years old and was diagnosed with multiple sclerosis 13 years ago, in 2007. Previously, I had led a somewhat normal life. I played handball 17 years of my life, and played in the highest category of handball. I left it at 29, and the decisions was unrelated to sclerosis since I hadn’t had any symptoms yet. Then, I started playing basque ball (pilota) and shortly after I began having mobility problems. I noticed that when I played I got more tired than usual and started to limp after a while playing … I didn’t know what was happening to me. They did a lot of analysis but they couldn’t find the reason for the situation I was in. Moreover, it was getting worse and worse. So they operated on me, they did a cervical laminoplasty (widening of the cervical canal) Everything went well but I stayed the same, I walked for half an hour to then started limping. So, I had to go back to the hospital, get more checks and all that stuff. Im telling you, this started in the year 2000, which was when I first showed symptoms and it wasn’t until 2007 when I was finally diagnosed with progressive multiple sclerosis (which differs from the relapsing remittent in that it is more disabling, less common and progressive rather than episodic). I was “lucky” to have been diagnosed at age 39 when my life had been established. I had been working for a long time, I had a stable partner… that is, I was already focused on my life. What is hard about this disease is that maybe you can be diagnosed with 20 years when all your life projects are underway. Of course this disease can get you fired from work, make people abandon you, because it is a disabling disease. As for me, I kept working, I worked 30 years in a multinational company until 2 years ago when my illness prevented me from continuing even though it was an office job. Nevertheless, only about 15 days passed since I stopped working and founded Okupas Motorizados (Motorized Squatters). I have not stopped doing stuff.
Before being diagnosed you had the uncertainty of not knowing what was happening to you, So, what did you feel at that moment, when you were diagnosed. Did it feel like your world is over?
Well, look, not really. It is true that the day they told me, I felt devastated although the diagnosis felt like a liberation due to those agonizing 7 years, I finally knew what was happening to me, I had that label and to me, that’s when you can begin to deal with it. I was very fast in that sense, as I told you I got with a naturopath, I joined the multiple sclerosis association, and basically, in a month I was already on with my new life. It was a change for the better during a time. However, over the years my quality of life is worse than it was 13 years ago.
On the one hand, it is true that it is a hard disease. On the other hand, I began to take more care, to eat better, to lose weight, etc. There was a time when I even walked without a cane, although now I no longer can unfortunately. Overall, the diagnosis was not bad news.
What about your family, friends and acquaintances? How did they react?
All my close ones in general reacted very well. As it was a long process, I had a lot of people who had my back. People supported me. Not everyone is so lucky. It could have been much worse. Not having many friends, being with no family around… that must be much harder.
What was your life like before diagnosis?
Before I lived my life as you could live it, doing sport, without any concern for the physical health part, chilling with my hobbies: sports, the sea and the beach. I did a thousand things, like travelling. I travelled a lot and this changed now in the sense that it is more uncomfortable but I haven’t stopped traveling. This year because of the COVID picture we haven’t. Although, shortly before that, my wife and I went to many places. We got to go to the French Polynesia, Easter Islands and many more with the electric scooter. In spite of everything, I am not so free, it is difficult for me to do several things, I am much more dependent on my wife, for example.
Do you feel wiser?
Without a doubt, of course. Suddenly my life changed and I had to be strong enough to go on and face something unexpected. For example, in the association of multiple sclerosis, the thing you were telling me about ALS? Well it is a disease w.ay worse than sclerosis. It also has no cure but becomes fatal. We share association with them. Whenever I went, I saw plenty of people with ALS and of course, they are in a much worse place than you. One day, they arrive with a cane, the next one in a chair, then they can’t speak and finally they do not appear, since they have already died. What am I going to complain about? It was a lesson. If this had not happened to me, my awareness with disability would be minimal. Those who live well do not stop to think about it. You visualize the steps, the work, the difficulties in general, things which you have never realized before.
I appreciate everything much more now. I may be disabled but I keep trying to do what I used to do. I try to adapt to circumstances, which is the best option. It’s useless to negate the disease because you have it, and that won’t change. Ignoring our disability does not help anyone, but neither does being overprotected.
“The art of living consists less in eliminating our problems and more about learning how to live with them.”
How is the treatment of the new people you meet? Is it different?
Different… well, yeah, but practically better. I’m not telling you that people feel pity but they support me a lot. At the Multiple Sclerosis Association we are working on many projects and you don’t know how people collaborate. You feel very loved.
People empathize and you notice it. There are very few cases of people who have dodged me after knowing about my illness. It was the other way around, people have turned to me. I am lucky regarding that too.
Do you think that the difficulties suffered by people with motor disabilities are disregarded? Are non-cognitive or psychosocial disabilities treated better?
Each one has its peculiarities. I’m sitting here and I can do the interview but someone with Alzheimer’s or Autism has it harder on them, they require special attention for their needs. We both have obstacles to overcome.
Our problem would be that there is more difficulty in understanding our issues. You look “normal” which makes it difficult for you to explain your problems to them. My hardship isn’t as visible to others unlike with a mental disability. We say it in Okupas Motorizados. People who take away your parking space do not believe that it’s hurting you that much. Just walk 20 more meters! But this can be like 20 km for us. I’m incapable of walking and doing another thing at the same time.
What made you start Okupas Motorizados?
When I was still working, I would send letters to the editor of the newspapers about an issue mentioned by the municipal police of Pamplona about the fraudulent use of disability cards. People using them from dead relatives and other types of infractions. It seemed such a scandal to me, that people who had been so near to the world of disability could do something like that. I wouldn’t stop writing. Then one day, a friend of mine sent me a photo of a car wrongly parked in the handicapped square and I posted it on my social media. One pic specifically from the Civil Guard that had parked there became so viral that they even apologized publicly. I just posted it with the first hashtag that I came up with (motorized squats) and people started sending photos, and the movement began like that. All kinds of people gathered: journalists, publicists, people of social law … of various professional profiles and we began to settle the phases that created Okupas Motorizados. People that I did not know anything about were joining this movement and it had an incredible impact. I even became a candidate for the Citizen Excellence Awards that I did not win, since there were people who had done much more. Even though, I have never stopped posting photos in these 2 years and I’m still into it. We even have had meetings with councilors and a myriad of initiatives emerged that supported us. It should be emphasized that the photos that we post are only a small part of reality.
We know that there are several types of associates, but is there a specific profile for the helpers?
The people who collaborate by sending photographs are of all kinds but parents of children are a very clear profile. People who have been fighting for 10 to 15 years, daily. Waiting so long that there would be more respect and understanding; and I came along. It is a serious problem! There are not enough lots in the center and areas like that and if they are occupied by those who shouldn’t be there, taking away the basic right that we have … What do we do? These lots make your life easier. Obviously, nobody wants this card. I would rather walk than have to use the card. If you want my card, have my disability. The vacancies are not a privilege we have, they are right. That selfishness annoys us. People who are able to park in our spaces that are closer to the door to avoid walking a bit more. I simply can’t wrap my head around it.
Okupas motorizados tries to raise awareness through social denouncement but, do you have other initiatives?
Yes, we have always said that we do not want to criminalize, let’s go more for the issue of sensitization and awareness. What have the photos been used for? To draw attention to this problem. Obviously, we have not stayed there, as we have gone forward, we have been treating other problems as I was saying, the lack of legislation that ends in the fraudulent use of the cards. We have already met 3 times with the government of Navarra so that it makes an autonomic regulation that regulates the cards. At present, Navarra is the only autonomous community in Spain without this regulation so we have come to insist on creating the provincial decree to normalize it. In 2020, we have spoken with different municipalities that have launched campaigns regarding the use of these positions, and others soon will. All while we do not stop in SNS.As for an update, the government of Navarra we met with a year ago has made no progress. That is why we do not stop reminding them. It is unfortunate that Navarra, so progressive and leading in many aspects, is so far behind with this.
Are you trying to make the victims visible? Does it help your cause to see who we are really affecting by this occupation?
It helps to create empathy, I think it is the solution to almost everything. I think if they empathized, they wouldn’t do it or it would cost them a lot more. Put yourself in my place and not in my space. What you do with ease, I can not.
Why does Okupas Motorizados preach reporting the behaviors and not people?
When there are people who do such maliciously, falsifying cards or using them fraudulently.
Those cases are absolutely serious and deserve punishment. They are much worse than a person who parks despite everything, one minute without a card since whoever goes with the card has the intentionality, they have planned it. But other than that, the issue of awareness, you could pay a fine and then keep doing it. It’s better to raise awareness and make them ponder where the error is.
Apart from the awareness and visibility with which we are already working, what is the tolerance work on Okupas Motorizados? What is tolerance for you?
I always address empathy. I mean, I think you can be a lot more tolerant if you are a little empathetic. Tolerance and empathy go hand in hand. Whoever puts themselves in your place will surely be more tolerant and respect you more. Instead, someone incapable of that, they are selfish, who accepts nothing but his own ideals.
We, young people, are usually portrayed with a negative light when it comes to tolerance. Do you think it is true?
I think that obviously, you, the newer generations will be more tolerant than our current generations. Look at my parents’ generation for example. If you were disabled, you stayed at home, you were isolated or even hidden, becoming a shame. That is over now. Of course, I cannot generalize like this to adolescents or adults, but it seems to me that you have more empathy and more horizons since you have contact with such diversity.
Social Media influences this, visibilizing issues which make us aware of what exists outside our bubble.
What do you think about the phrase to tolerate the intolerant? Should it be done?
I think what you have to do is try to change their behavior. It seems to me that yes, we must tolerate the intolerant because if not, we are not putting ourselves at their level and you oughtn’t. I will accept them, who deny my rights, in the hope that they will see the error of their ways and learn. Marcos Ana makes a perfect example in this in his books. How he could never torture anyone because he knows what it feels like. I feel the same.
Would you be interested in getting involved with other issues related to discrimination based on disability? Issues such as labor exclusion, lack of access to public transport, education or political participation …
I could not right now due to lack of resources and because I am full time with what I do right now but from my social networks I try to make these problems visible. With Okupas we have specialized so much that we cannot so we do not divert attention from what we cover. The issue of sensitibilization is very relevant too. It is very true that there are cases in which when they come to mention their disability they must leave, making everything even more difficult. Everything you mention is true and relevant. However, I am satisfied with the impact we have had. I have even come out in the regional television and radio, something I never would have expected before, we are making a change as much as we can.
If you could press a button that would make no one else born or develop any kind disability, would you?
Since there are cases in which their disability sometimes gives them an opportunity and unique points of view that can’t be obtained any other way.
Yes, yes, I would press it, without a doubt. I have thought about it before, that it is also true that you can give incredible maturity and spirit but it seems like a price to pay too high. If I could make your life easier, I would. I would love to run again and play handball myself, change this situation.
Give me a phrase that would be your magnum opus, with which the world would remember you. Something that you would put in your epitaph.
Woah, I couldn’t tell you. Maybe, aspire to the max, at least I feel that way. Or be a fighter because I would also like to be remembered that way. Enjoy life, pursue your dreams and fight for something. It is typical and basic but really truthful. Until something happens to us, we keep delaying everything and then it seems already too late when we think about it. If I could change things from the past I would like to do many things earlier.
To conclude, why is tolerance so important in our society? current? How does tolerance benefit us?
We will have a better life in every way, the more we respect each other, the better we will do as a society. We cannot stop being tolerant, it makes life easier for others and what is more beautiful than that. Being intolerant does not get you anywhere. Tolerance is the basis of freedom in our current societies. Do not deprive others of anything that you are not deprived of and be even more tolerant even with those with special requirements, help them. That your freedom never restricts mine.
Would you like to direct a message or add something else?
I just want to say thank you, thank you to everyone: my wife, friends, family. Thanks a lot. Thanks for your behavior with me. To society: try to be more empathetic. Surely everything works much better that way. I wish everyone who has a disability or issue of any kind has the environment I enjoyed. Among other things, the world is changing for the better. Yes, much remains to be done but I think that the message is getting through. It seems that we are evolving. I repeat, much remains to be done and hopefully the citizen initiative I started disappears. I yearn for the day when they stop sending me photos of these abuses.
As requested by Juan, this is a really short text on my thoughts regarding the project and the interview.
I wholeheartedly stand by Okupas Motorizados’ initiative. I believe their work is not only valid but admirable and incredibly motivational. I hope they can reach their goals and make Navarra a better place for them and everyone around. I think it’s too idyllic to believe someday everyone will come to the same conclusions but one can dream. I wish I could have written every single thing we talked about during the interview because to me it was an incredible experience getting to discuss things with him and he has many life lessons teens like me can learn from. Thanks, Juan, for the interview. I’m also grateful to my teachers and the readers too for even bothering to read what I have written.