I've never felt disabled


Anna Książek: How did you know that the waiter is handing you a teaspoon?

Monika Zaręba: I heard his footsteps, waited a moment and reached out my hand in the direction I expected him to come from.

No one in the cafe realized she is blind. Yet, she sees only 1%.

M: I don't know exactly when I started to lose sight. When I was 10, my parents noticed that something was wrong. At the beginning there were quarrels, they shouted at me what do I do at school, if I write down nonsense from the blackboard. As a child I didn't realize I couldn't see well. We started medical research, it was getting worse every year, but because it was progressive I didn't feel much loss. I think my brain stopped at some stage and believed it can see.

A: What do you mean by "it can see"?

I can't explain it. Sometimes I think I see more than I should. The key is that my parents always treated me like a non-disabled person. They didn't make things easier for me, on the contrary, they raised the expectations. As a teenager, I blamed them and believed they demand too much of me. Now I am grateful, because thanks to them I have achieved something in life. I finished high school, left my hometown of Bydgoszcz, lived by myself in a dorm. I studied at Lodz University of Technology, although it was not my initial plan.

- What did you want to do instead?

I got accepted for the actor school. At the first application.

- And you resigned?! Because of the sight?

Because of the guy. I still cannot believe it. He later became my husband, father of my children. And after 25 years of marriage he left the house never to return.

- Tell me more about that.

There is not much to say. I just came home one day and his stuff was gone. After 3 months it turned out that he left me with 400,000 zloty (ed. about 90,000 euro) of debts. I got heavily depressed and if it wasn't for the children I wouldn't get up, but I knew that I had to fight for them. He had 7 companies, he was a man of many ideas. We'd lived together 25 years for a reason. We had a good relationship and a very similar view of the world. But he got lost somehow, maybe money hit his head, I don't know. I tried to explain it to myself but I didn't find the answer.

- Have you ever spoken with him again?

For three months he didn't answer the phone at all. Then I got a divorce request. I couldn't afford a lawyer, I was earning less than 1,300 zloty (ed. 300 euro), the minimum salary in Poland that time, and I was left alone with two children. We saw each other in court, the case lasted 15 minutes. I agreed to everything, I just wanted to get it over with. Now I regret I didn't ask for a guilt statement. Anyway, he got the divorce and I finally heard: “I love you very much, but I can't be with you”. It took me completely apart, I got depressed again. A year later he had a new wife. 12 years younger, of course.

- How did you manage?

First of all, children. Secondly, I came back to work. Before it all happened, I used to work in a corporation for 6 years. At that time I didn't have disability papers ...

- You didn't have papers? But at that time you could hardly see anything already...

My parents never made papers and it stayed that way. I finished normal schools, studies, then I started selling cars, I became a specialist in loans and liaison, and the lack of eyesight didn't bother me in that. I managed somehow, I went through periodic tests knowing the visual board by heart.

- Did you know the board by heart?!

Yes, then there was the same board in every office. I went into the office, they asked if I wear glasses, I answered truthfully that I didn't. They asked me to say the third letter in the second row. I spoke from memory. If someone had looked at the eyes, they would have probably realized. At that time many things were done differently. With disability papers it was more difficult to find a job, now there are a lot of opportunities for these kind of people.

- So car sales first, then corporation?

Yes. And after six years in the corporation, my husband convinced me to quit and finally apply for a disability pension. I almost paid for it with depression. First month, two ... great, but no more. I had to do something. By chance I came to the Polish Blind Association, the president asked me if I was looking for a job. We talked for a while, he asked me to bring the CV and the next week I started to work there. After 8 months, the director of the Łódź chapter of the association came to me and said: “Listen, my colleague called me, they need someone to Fundacja Szansa dla Niewidomych [a Chance for the Blind Foundation], and you are wasting your time here. Call him.” I called, within 20 minutes I was accepted for the job and this is what I have been doing in the last six years.

- What do you do exactly at the Foundation?

I work with people with visual impairments, we run various training and workshops, for example I teach them how to use technology, computers and cellphones. In general, working at the Foundation and helping people who do not necessarily see worse than me, but are just less adjusted to reality, keeps me up and running. I stopped thinking about my problems, I focused on the fact that I can help these people, and it turned out that it does work... of course you can't help everyone, but I see the results, it is getting better, our Lodz Foundation is developing, at the moment I support headquarters in several other cities. I think that working with disabled people means that I don't feel disabled myself. They pulled me out of my personal swamp.

- The craziest thing you've ever done at the Foundation?

A car race for deaf and blind people. First, for a few days, under the supervision of instructors, they learned to drive a car, and then at the airport we did actual races. The instructors gave them instructions by touching their knees. It was a huge experience for them as well, after the event the instructors got blindfolded to try it themselves. They thanked us they could experience something like that.

- Do you also work with non-disabled people?

Yes, mainly with institutions. I train employees to know how to "handle" disabled people. Our problems often arise from people's ignorance and fear.

- So how do you "handle" a disabled person?

It's about simple things, but that's enough to make our lives easier. For example, when a client enters and cannot see, you have to tell him where to sit, it is not enough to say: here is a chair, because “here” means nothing to such a person. It is not necessary to approach and grab my hand, because for example I have a problem with strangers touching me, instead you can just say: go two steps ahead and if you reach out your hand there will be a chair. Another thing, when a person in the office goes out for documents, it is worth to mention it because a blind person may not notice it and start asking something. It is also often the case that when I come with a friend or helper, the clerk behaves as if I was not there. He talks to the person who comes with me, and yet this person is there just to help me find the right place. I am not incapacitated. If I came with a guide dog, would they speak to the dog?

- How do you manage in everyday life?

I feel a lot. In addition to hearing things that others can't hear, sometimes I think I have another sense, it's hard to define. In a way, I feel that in a moment this and that is about to happen and it actually happens.

- Let's get to practical things. For example, how do you do make-up?

You see, actually without a mirror. By now I'm getting quite good at it. I started with make-up very late, but fine, I thought, I can use eyelashes just with touch. The only condition is that the mascara brush has to be fat, otherwise it's difficult for me. Fortunately, I have dark complexions, no skin problems, so I don't need much. When my daughter started to be interested in make-up, she taught me step by step how to make a proper one. The funny thing is that I still try to use the mirror. It ends up with one of my children coming in and saying: “Mom, you painted the mirror again”. I try so hard to see something and I stand so close that I paint not only myself, but also the mirror. But I do make-up. Anything can be learned. Maybe I will not drive a car or a bike anymore. I miss that a bit.

- And other sports?

I go to the gym where there are stationary bikes. And I love skiing.

- Skiing?!

Yes. The trick is that the first few times on a new slope I go down with someone, I learn the slope. And then I try alone. I like these things, life on the edge. I've always liked what others might not want to do. I did skydiving, rode a bike for a long time, when I could hardly see until they stole this bike from me. Maybe it's a need to prove to myself that I can.

- And in what the lack of vision bothers you the most?

The hardest thing was with small children, this constant stress that I could not prevent them from harm. Or that they run two meters too far and a car my hit them. And my children are very active, they have it in their genes. Now that they grow up, I feel I can live peacefully. They also help me a lot. Over the past few years, my vision has deteriorated significantly. 6 years ago I saw 4%, today it is only 1%. These last few years in my life were really hard, I think that stress caused deterioration. But I feel like I'm going back. I managed to trust again, I'm trying to build a new relationship, enjoy life, I love reading, visiting new places.

- How do you visit?

The person with whom I travel takes pictures of everything: monuments, nature, boards, descriptions. Then I zoom them in on the computer and try to see something. You can also sense a lot of things - sculptures, a lake, wind. Most of the visit, however, is the audio-description of the accompanying person who tells me what they see.

- How do you shop?

In stores that I know and in those that don't move goods all the time. Lidl is such a place. Once I learn, I know where to look for what I need. And if I can't find it, I ask for help and that's it. I make larger purchases with my son or daughter.

- Cleaning?

Oh, you see, I'm obsessed with that. I can't clean up as I would like, and whenever someone comes, I'm stressed that it maybe dirty, that somewhere under the bed or on some shelf there is dust, because I didn't notice it.

- How do you choose clothes?

I have them all black. And when I buy something new, it's usually with someone.

- Do you watch movies?

Sometimes, mainly on Netflix. I can't watch movies or TV series with subtitles, I need a voiceover.

- Do you read Braille?

No.

- Why?

Because I've never felt disabled? Because no one ever suggested me to learn it? I know single letters and maybe I should learn the whole thing, but that requires time. I don't need it yet. But I would really like to learn sign language.

- Sign language?! How do you imagine it?

I don't know, there must be a way. A deaf person usually sees. I won't see how he or she speaks but maybe I can communicate something myself.

- Do you think the way you live influences people you work with?

I think so. I have an advantage among trainers, that I can work on my own example. Show that you can live with it. There are more and more diseases similar to mine. Parents of children aged 10-12 come, totally depressed. I am a hope to them that their child will be able to lead a normal life, that this is not a life sentence. It gives me great satisfaction: all the fights I went through myself can now help others.

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We are Anna and Andrea, a Polish-Italian couple traveling around the world. We are looking for changemakers,  in order to describe and share their stories.

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