Just normal

Syliwia Kośmider: What is your attitude towards people with disabilities? Has it always been like this? Has anything changed in this topic for you?

Wojtek Jałoszyński: They are ordinary people and that’s it. They are my friends, acquaintances, co-workers, sometimes also mentees. Above all, however, they are normal people, capable of many tasks, social roles and relationships. Various relationships, also to the intimate ones. My ex-girlfriend has a disability, and that was one of the factors that I was with her for. As I mentioned earlier, the sick and the disabled are a bit of my natural environment. I feel good, safe among such people, we understand each other, we are often connected by experiences, passions, a similar view of the world and people. Generally they are their own, although sometimes they can give it a hard time – after all, I was abandoned and I had to shed some tears (laughs). And seriously, just normalcy, individualism, because everyone is different. I am far from granting sick or disabled people the status of privileged or disadvantaged, they are just normal people. Today, almost everyone has or will have health problems.

Has my approach changed? Let me put it this way, I think if it weren’t for my life story, I would have looked at it all differently. Only a rejected and deeply wounded person is able to be with another person and can try to understand him.

Do you think that a disability or illness determines our life?

Of course! It is part of me that is part of what is called an identity or a personality. Just like the fact that I am a man, a man, a Pole, a Christian, a Catholic, etc. If it were not for my illness, I would not be the man I am. I wouldn’t have met many very good people, I wouldn’t have had the experiences I have, and it was only because of my illness. Thanks to my illness, I became more empathetic and I learned to listen to other people. There is no Wojtek Jałoszyński, this particular one, from Miłosławski, “Manhattan” (or Biedaczków) without disease. It’s a part of me, a very important part of me. Only accepting yourself as you are can lead to freedom and living a real life. It is a difficult but extremely important task that is the task of every human being. Discover and be yourself, accept yourself, your own advantages, possibilities, but also disadvantages and limitations. And I know what I am saying, because for 20 years I was running away from myself, my illness, and I wanted to force my life as healthy, but it is impossible. My reality caught up with me and threw me hard to the ground. You had to look at yourself again, accept and move on with your head held high, aware of your worth. What I’m saying I know is terribly unpopular today, but it is. You have to accept yourself and try to find yourself in this life, and this can be done, although, as I said before, it is very difficult.

You know, if you accept that you have no limitations, and the disease does not have any impact on your life, you live in a lie, in some delusion and sooner or later you will discover the void because you will be missing. You will be frustrated, angry with yourself and your anger will reach your loved ones, because at some point you will discover that your disability is very real and has something to say in your life. And sometimes under, through, or in spite of it, you make choices in your life.

If it weren’t for the disease, I don’t know if we would have talked at all today. I don’t know what I would do in my life, what it would look like. Maybe I would be a junkie and live at the train station? We do not know that, there is no point in asking, you have to take yourself and live as it is. You have to take your limitations, you can’t do everything, neither can I, and even healthy people can’t always reach for what they want. That’s life.

Of course, there is also a second trap, the first is “wanting to be able to, I have no limits” and the second is “I’m sick, period”. Then the person gives up all actions, withdraws and becomes demanding.

These are the two extreme attitudes that cut off the oxygen supply. You have to find a golden mean. You need an honest, reliable and authentic self-reflection on yourself, and then there is nothing else but to accept, love yourself and move on!

What do you think about the relationship of disabled or sick people with healthy people, and do you think they are a burden? If so, does that mean they are denying themselves the right to be happy ?

I think you need to break this down into several elements. First of all, people with disabilities or illnesses, as I mentioned at the beginning, are capable of relationships, including the intimate ones. At least on an emotional level. There are plenty of examples for this.

Secondly, relationships between the sick, the disabled and the healthy are normal, as are the relationships between the healthy and the healthy.

Third, it is getting less optimistic here. Unfortunately, there is a belief that “sick people sometimes also get into relationships with each other”. In principle, we healthy people join in pairs here, we get married, we have children, and you, the sick, unite with each other, just don’t show yourself too much. And how can you be careful with these children, because then there will only be problems.

It is healthy people who have a problem with accepting such a relationship, let alone being associated with a “disabled person”. My friend did research on the emotional life of sick and disabled people. Almost everyone agreed that such persons have the right to feelings and happiness, and that they wish them to find their significant other. Almost everyone imagined acquaintance with such people. Friendship, friendship, no problem. The proportions were reversed when asked about entering into a relationship with a sick or disabled person, and when asked whether, as a parent, you would approve of your child’s relationship. Almost 99% of the respondents answered that they would not and would not enter into such a relationship, and would not accept such a relationship of their child.

These studies obviously require further and careful analysis, but the social climate for such relationships can be perceived as bad and unacceptable. In a society, let’s add it with firmness, for example Catholic, there is no place for a love that loves despite its visible limitations. Anyway, my experiences and my friends and acquaintances seem to confirm the results of this study. Unfortunately, such is the thinking “you do whatever you want there, we wish you well, but go away from here.” The problem lies in the thinking of healthy people who fear such people.

Fourth, we’ll look at what this fear is about. First of all, finances and disease attacks. So things that we have already talked about, and which are, whether we like it or not, very real in the lives of sick and disabled people.

Relationships, especially marriages and families, are not cheap slogans, but serious matters that have far-reaching consequences. Marriage and love are not romantic dinners, emotional elations, passions, but monotonous walking together in life. It is mutual self-tolerance. It’s mutual support, it’s adding to the common table, home, etc. I know what I’m saying right now is terribly unpopular, but it’s real. We have to answer a lot of questions. Love is a situation (a situation, not a feeling!) Which presupposes mutual giving of goods to one another. Hence the question, are we, as sick or disabled people, able to give as much as we take? I also mean finances. Unfortunately, you pay for the bread with money. Of course, you can get along and live on the support of your parents, in-laws, but does it make sense then? Isn’t it playing house sometimes?

Love is freedom and a place for the person I love to spread their wings around me. To what extent am I able to ensure her freedom, to what extent will I be a burden for her, will the spouse develop in this relationship? What about offspring, especially if my disease is genetic? Let’s face it, illness or disability is a series of difficulties and limitations. These are facts and too serious matters to be answered with the slogan “love is for everyone”. Because of course it is, but I cannot take responsibility for someone else’s life if I do not know their situation. You have to ask yourself all these questions and answer them honestly. Of course, if your loved one knows the situation, all the consequences of what will or may happen, and is still able to bond with you for life, don’t hesitate for a moment!

Fifth, and that is also unpopular and is often not talked about, but it has to be mentioned. Well, living with a sick or disabled person in a rather hermetic environment such as a family, home is exposed to frequent conflicts, conflicts, and misunderstandings, which are indirectly caused by illness or disability. It comes out in prosaic matters such as: you have a planned trip for your dream vacation, you have won a vacation, you paid an advance, tickets for the flight are paid, the kids are packed and impatient waiting in the car and you are about to leave, and suddenly it turns out that your husband has an attack of illness. Let’s just say chronic enteritis became known today. No drug works, you have to go to the hospital because you are dehydrated, you have to cancel everything, add stress, fatigue, the kids scream and you are damned. Fuck, it can happen to anyone, but are you able then not to be angry with your husband? Don’t snort by accident: “It’s your fault, you don’t take care of yourself, you haven’t taken medication, etc.” And if this is not the first such action? This also needs to be taken into account and carefully considered if I am able to enter something like this.

Sixth, there is a myth that happiness depends on whether I am in a relationship or not. It is a myth and a very dangerous trap to make your happiness depend on it. It is building on a very weak foundation, it is enough for something to break and the whole structure to fall headlong. Happiness is a state in me and does not depend on external affairs at all. And the relationship, marriage, family are external and secondary matters. I can be happy being single and I can be happy being sick. And I will say more when I am happy alone, only then can I enter into a relationship and share my happiness with another person. We are attracted to happy people. The most attractive people are those who seem to get along perfectly without us and don’t need a savior at all. If you think that being with someone will make you happy, you can disappoint yourself deeply. Being with another person is not about making me happy, but about sharing mine with him. Only then can it work!

In summary, disease or disability is a burden, not a relationship or love. Love is a gift and it is possible even in the case of disabled and sick people. However, it requires reflection and honest conversation with a loved one. Otherwise, it is a caricature of love and a cheap slogan.

Everyone is different, even the same disease is experienced differently by other patients. Hence, I am far from, as I said before, taking responsibility for the words: “love is for everyone”. I am also far from taking responsibility for the words: “if you are sick, you cannot enter into a relationship or start a family.” Each case is different and that’s it.

I also think that women have it easier, because after all, we are more convinced by the image of a woman who takes care of the house, children, etc. and does not have the same financial responsibility as men support the family. It is the man who must be healthy, the full strength warrior who brings the game home. A guy who cleans, cooks and takes care of children does not seem sexy. Even though I love taking care of children, I know that with my Pakistani sheep shepherd’s face it sounds weird at least (laughs). Cleaning calms me down and cooking gives me the joy of being creative.

As far as I am concerned, I believe that in my case, in my current life situation, bonding with someone and starting a family would be pointless and a caricature. It would be playing at home. Maybe someday there will be a woman for whom the male housewife will be sexy, or I will finally start living on my own (laughs). Although maybe I would be hesitant then, but it’s too personal so I won’t talk about it. For now, I live a happy celibate life. For the uninitiated, the life of an eternal bachelor. Happy eternal bachelor (laughs)! By the way, I’m thinking of my own business, which I would call “Anti-Marriage Teachings” (Laughter)

What do you think about the education system in Poland? Do you think it is adapted to disabled or sick people and why?

The higher education system based on the Bologna Process is flawed, and almost every common sense person sees it. This system produces worthless masters with nothing to offer the labor market. Anyway, we are dealing with the stupefaction of young people at every step. It is enough to ask professors about the difference between youth 15 years ago and today’s youth. They use the word drama. They often return with longing to the old days or admire students from the countries of the former Soviet Union, where the Bologna model works, but somehow different. First of all, there is an 8-class primary school, there are no middle schools, and high schools are 4 years old. I am mentioning studies because often for disabled and sick people, education and studies are the only chance for normality and a way to use their, often enormous, intellectual potential. Well, it is true that our brains are more efficient than our bodies. And it is very good if people with disabilities take advantage of these opportunities. The problem is, however, that often nothing but the otherwise quite right admiration for the scientific achievements of people with disabilities who are doctors, and even from two fields, comes to nothing. We don’t have Polish Stephan Hawking, although we have doctors in physics in a wheelchair. This potential disappears somewhere, often no one knows what to do with doctors in a wheelchair. Sometimes such students are also tempted to go to science, the golden mountain is promised, although the only point is that the professor should promote a doctoral student, which will bring him tangible benefits. The young man counts only to the statistics and is forgotten the moment he receives his diploma. The scientific career of people with disabilities is an attractive vision because, unfortunately, many of us have low self-esteem and are easy to manipulate; you are great, show them that you can, after all, where will you find yourself, etc. I was also offered such a path, but my potential, work, effort would be wasted. After four years, it would be fun to be a doctor whose job nobody cares about. Of course, many would congratulate me on my determination, intellect, etc., but would there be anything concrete about it? I dare to doubt, because on the part of the university, there was too much idea to use what I wanted to do. I would probably end up putting my diploma on my desk and I would be left with what I am doing now, which is the same struggle for survival that I fight as an ordinary master.

Anyway, for healthy young doctors, there are also very little prospects. Similarly for healthy masters, we are not alone in this problem. It is a poor consolation, but still.

Courses, vocational training financed from European Funds for the disabled also seem not always right and they are more profitable for institutions conducting these trainings than for people looking for a job. It is similar with the training offer for healthy people.

It seems to me that this country lacks ideas on how to use the entrepreneurial and intellectual potential of Poles very realistically, creatively and profitably, not only those with disabilities. Although for the latter ideas, the real and concrete ones, there seems to be no

In the context of disabled / sick people, are you for euthanasia or not? Do you think that a sick or disabled person has the right to make a life-ending decision?

As a sick person who loves life, I would never choose to be euthanized. Even if it would involve great pain and suffering. It is God who will decide, not me, when I will breathe my last. However, when it comes to persistent therapy, I am not a supporter of it. According to the teaching of the Church, I am not in favor of artificially extending life. Memorable words of St. John Paul II – “Let me go to the Father’s house.” Everything has its timing, including death. And I hope that my life has meaning, also my suffering and my death are not meaningless. If someone hopes and knows that their life and everything that happened to them in this life has meaning, they will never want to stop their life.

I can understand arguments like “I don’t want to burden my loved ones etc”, but you don’t have to burden them with yourself. If my family could not cope with me, I would not mind being placed in a hospice. I don’t have to burden anyone with myself, but it’s not up to me to decide when I will die.

We talk about euthanasia only because sickness, suffering and pain are not fashionable today. We believe that this is nonsensical and should be avoided at all costs. In the past, as described by Philippe Aries in “Man and Death”, people had to deal with disease, death almost everywhere, and it was not a problem for anyone. It was not denied, it was not fled, death and disease were not swept under the rug. They were obvious, something that must happen in every person’s life. This is no longer the case today. Disease, suffering, disability, with today’s knowledge and possibilities, have paradoxically become something embarrassing or even harmful to society. In the past, people were sick, gave birth or became disabled, and societies were familiar with it. Such a man lived, worked, often played great social roles and died when his time came, and that was it. It never occurred to anyone to entrust the sick to various institutions so that they would die there, let alone end this life sooner, so that someone would not get tired. It was normal. And these are not some distant times at all. In the past, people like me were called “sickly, he died young”, they were often great people and no one excluded them from society. Currently, we have the capabilities, knowledge and know how to extend human life. Yet a diagnosis that prolongs life causes exclusion today. And we don’t know the recipe for that.

I know you wanted to become a clergyman and you didn’t succeed. Was your illness influenced by your illness?

Yes, because of her I did not become a priest and a religious. In retrospect, I think there was a finger of God in it. I don’t regret the fact that I wanted to become first a diocesan priest and then a Jesuit. I have no grudge or regret towards the people who did not let me take this path. To this day, I am in good contact with the minister of vocations at the time, and now a novice master at the Society of Jesus, Fr. Piotr Szymański, SJ, who is a very important person for me, a kind of master. Besides, it is not only him that I keep in touch with.

It was a very good time which gave me a lot, especially about myself. One of the fruits of that time is everything that is hidden under the slogan: “There is hope, so it is worth living”. Anyway, my life mission is also the merit of the Jesuits. Thanks to this desire, I was also able to experience the Spiritual Exercises of St.. Ignacy Loyola, that is over 30 days in complete silence. Amazing meeting with God and myself!

In a sense, I took up a spiritual life choosing the state I live in, that is, godlessness – that eternal cavalry. As he called, he called it, but it is about the same (laughs).

However, I think that it is necessary to look at this issue more broadly, because I was not the first and probably not the last one who wanted to become a priest with an illness.

The question that arises is why a sick person cannot become a priest or a religious?

Again, you need to cover the topic from different angles, first of all what I mentioned when discussing relationships. Living with a chronic disease or disability in a closed, hermetic environment, and this is what a given monastery is, causes the escalation of conflicts. Especially if it is a male community, a bit like a military formation, where let’s face it, there is no place to get sick. Everyone has specific obligations and they must be fulfilled. It’s just like at work or in the family. And if someone regularly fails, even if it’s not their fault, it creates conflicts and exacerbates them. And I know what I’m saying, I live in a family, I lived for 4.5 years in a dormitory and sorry but if you screw up, you break the community. It’s not popular what I say, but these are facts and you have to take them into account. We may not like it, but it is so and we only have to respect the laws that govern social life.

A priesthood like marriage, although with a much lesser degree of responsibility, carries with it specific tasks and responsibilities. I do not know if disabled and sick people are able to complete them. I do not know if I could cope with them myself. I have no idea. Although, on the other hand, we have the late Fr. Jan Kaczkowski, who fulfilled his tasks excellently despite his handicap. And he was even doing more than necessary. Here, as in the case of a decision to marry, you need careful analysis, reflection, honest conversations and… prayer. Because it is God who leads us along his ways, even if you do not understand something, do not agree with something, it is considered injustice, you have to take it on faith and believe that the Boss Bosses will get something good from it. My case perfectly confirms that God can make even the biggest crap beautiful.

Second language. You may not accept someone to a seminary or religious order, but you cannot tell them that they are a waste of time, money, and that they will die before their 40s. Unfortunately, this was what happened to me when I wanted to enter the seminary after graduation. Three years later, when I wanted to enter the Jesuits, I was treated completely differently. I was shown respect, forbearance, and really Fr. Piotr felt sorry that he could not receive me. I was very built up by his attitude and by the other fathers I spoke to. Unfortunately, the Church, especially at the diocesan level, has a problem with the language. This is due to various reasons, from the very education of seminarians to poor human formation in seminaries. Because they are such professions, with all my great respect for people who graduated from vocational schools, who teach a profession instead of thinking. Many priests who pass an ordinary seminary do not even know the Scriptures. In monasteries the formation is extended, with Jesuits it lasts about 10 years and looks a bit different than in the diocesan seminary. Anyway, it has always been the case that the monks were and are more human than diocesan ones. Anyway, Pope Francis is just a Jesuit, and although I agree with him in few matters, the symbol of his pontificate is the language he uses. The language of love and respect towards another human being.

Third, the attitude of the Church and its people to disease and disability. And here we have two extremes. The first one recognizes such people as someone to whom you need to “lean over”, sympathize, help, etc. This is someone who is the recipient and cannot have much to offer. Often people with disabilities are even used by priests for derogatory tasks, and in addition one hears stupid sneers. Many churchmen are sick or disabled people who are sincerely devoted to their work, perform it perfectly, and in return hear “God bless you”, stupid expressions and laughing.

The other extreme in the Church is “God doesn’t want anyone to be sick.” So everyone has to be healed, and the one who is not healed has a problem. He is a sinner or too little “opens himself to the grace of the Holy Spirit.” It is a vision in which a Christian is beautiful, healthy, strong and rich. And if he is not, it means that God would take offense at him and stop blessing him. This is total confusion with confusion because that’s not what Christianity is about at all. Unfortunately, such a vision is gaining more and more supporters. It presents Christianity as a path to success and happiness. Jesus is not the savior from eternal death in it, but the giver of work, other half, health, etc. And if he does not give it, he is either with me or something is wrong with me. So, in general, people like us do not fit into such a puzzle, so how can you appoint someone like that to be a priest?

The church doesn’t really have ideas about sick and disabled people. And he may say that we are valuable or even privileged in grace, but what if we are not shown elementary respect? An example is the celebration of the Baptism of Poland in Poznań, at the INEA stadium, where no one thought that people in wheelchairs might arrive and you need to leave free parking spaces designated for them and not block them with coaches

The village and that’s it. Only you know… beetroot will always be beetroot, and a hypocrite will always be a hypocrite. Regardless of whether he is a priest, doctor, taxi driver or politician. The problem lies in the way Polish society thinks. Because only from the Polish perspective can I comment on this topic. Maybe it looks different elsewhere? I would like to believe that it is only people in this country who are afraid of disease and disability … Or maybe there will come a time when, in Poland, the sick or disabled will have a say in the Church.

Fragment of an interview “with a vampire on law” by Sylwia Kośmider. The whole interview is available at this link: http://www.colletta.pl/wojtkiem/

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