Life with Cerebral Palsy and... with passion.

May - october 2011

 

WHEN YOU ARE ABOUT TO GIVE IN

STORY OF MY LIFE

 

 

CHILDHOOD IN RUSSIA
 

When my Mom and I left Russia, I was 17 years old. Remembering my childhood, I see long lines, in which either my weeping grandmother or aunt hold me in their arms, begging people to let them in first with a sick child, but people did not believe that I was sick. 

 

I remember that after I had returned home from a boarding school in Uspenk, I had nightmares for several years and could not stand the sound of a spoon scraping the plate bottom, because it reminded me hearing this sound, when the nurse fed other children, and I could hardly wait for my turn…

 

I remember spending summers with my grandmother, where I just sat on the bench because I could not walk, because we had no wheelchair. I also had no friends. The only friends I did have, when I returned back home to my mother who lived in the North, were dogs and cats... 

 

I remember living with Mom I could not get out of the house surrounded by huge snow drifts...

The most vivid and colorful among my childhood memories are vacations with Mom on the Black Sea, walks, concerts, amusement parks and so on. Then there were trips to Poland for rehabilitation.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

WANDERINGS
 
In the beginning of the nineties we left Russia for Poland forever. In Poland my mother and I lived through some very difficult times. For two years I lived in rehabilitation centers and hospitals. My mom stayed at other places – first at the hotel, then with friends. Probably one of the most difficult moments of my life in Poland was staying at a rehabilitation center “Busko – Zdroj”, about 600 km from Warsaw. At that time my mother fell sick with hepatitis and spent a few months in hospital. Being sick she lost her janitor's job at a rehabilitation center. She lost her contract while she was in the hospital. The worst thing of all was that during that time we had no contact with each other for almost half a year! 

In 1994 I was moved back to Warsaw and placed in a rehabilitation center. My mother, after she had come from hospital, was able to visit me there and even take me to her hotel on weekends. At the time I was 17 - 20 years. I picked up Polish language very quickly. In a year, I was able to read, and they let me visit fifth grade. 

As for Russian, I was trying to forget it, partly because of protest, and partly because if I spoke with an accent, my peers would have turned away from me. 

Then there were two years of stability - we both lived (my mother worked, and I studied at home) in the house of a nice person, with a very difficult character, a priest, Rev. Malakhovsky. We really wanted to have our own corner, and in 1996 we moved to Italy, where my mom hoped to find a job, but it was even worse there. For two and a half months we lived in a shelter for homeless, where we met very kind people ready to share with us the little they had. They often put in my hands an apple or a bottle of sweet water. But I did not want to stay in Italy and we went back to Poland, where our ordeal continued... 

Then through my own experience I learned even more what it means to be homeless. A couple of weeks we lived in a hotel, paid for by an acquaintance of ours, then for a few months we lived at a priest’s house, where my mother worked. The priest forbade me to eat with him at the table when he had visitors. For the money my mother made we rented a room in a cheap hotel. Then for a couple of years, we lived with a family of eight children. We ate only sandwiches and tea, which we boiled in a cup with the help of portable water heater because there was no stove for cooking. The landlady invited us sometimes to have meal with them or brought me a bowl of hot soup, but this family was not rich and I was embarrassed to ask for more... 

In 1998, at the advice of an acquaintance, I was able to get into a good rehab center, where at the therapeutic sessions I first dared to voice my opinions and thoughts on various topics in front of a group of people, which was a great help for my problems with speech! They also literally taught me to walk with the help of special walker, and I even ventured to go to a store by myself, which for me was an equivalent of jumping into a well without a bottom! Thanks to the emancipation obtained at the center, I started learning wheelchair dancing. (A year later I wanted to go to the center for rehabilitation again, but it was closed, by the City Authorities, ostensibly for lack of money, thereby depriving hundreds of people with disabilities of hope for a better life.

While I was at the center, my mom lived in the House for single mothers, where even the bed and linens should be shared with other women, who were not always clean. One time after a wheelchair dance workout my mother took me to stay with her overnight at that place. I remember that I was very tired and wanted to go to bed as soon as possible, but mom's bed was occupied by another woman with healthy children. I fell asleep sitting in a wheelchair with my elbows on the table. When my mother protested, the administration told her to get out there "with her invalid!" Once again, my mom was forced to live with friends. I remember all this time I wanted to have my own bed and table, and very often because of the nervousness I had stomachaches...

 

FLAT OR PRISON

At last the wanderings were over, and we got an apartment ... On the eighth floor, 31 sq. meters, an old elevator, and eight steps to get to it. Of course we were glad that we will no longer move from place to place. Seeing that it was not adapted for a person with disabilities, my mother placed an application for a more convenient place for me. But it never came and 9 years later we were crossed off from the waiting list.

So this apartment literally and figuratively turned into my prison. I was unable to ride into the toilet by myself, and I had to ask Mom to walk me in. I could not get in the bathtub by myself either, and there was no one except my mom' to help me in, so she lifted me up and down in spite of her backaches!  The wheelchair could not even get through the kitchen door, so I would not be able to get to the fridge! For the last year I could not go outside because my mom did not have enough strength to go though the whole procedure. To do this she had to walk me down the steps, then while I stood there holding to the railing, she had to run quickly up the steps (before my hands let go) bring down the wheelchair, and put me in it. But it was even worse and more dangerous for both of us to get me back to the apartment. Mom had to hold me from behind, and walking behind me, get me up the steps. I weigh as much as she does. Besides, I have enormous spasticity especially when I get up - if I fall back on my mother … and she is already 70 years old!  We did not have friends, and there is no special service to help. Lately I even asked mom not to lock the apartment, because the lock was too high for me to open, and had something happened to her, I would not have been able to open the door to call for help!

 

EVIDENCE

Because of my speech problems, I always have to prove something to somebody and persuade others that I am really able to do. Nobody believes, at least until they get to know me better. It is always a difficult struggle for me! 

They did not want to take me to the first climbing camp!  "Sure! With such spasticity! " In Poland, when Mom shared with others that I danced, did rock climbing and even studied at the University, very few people believed that. It was both funny and sad. For example, my mother shows the book with my first and last name as the author, and the person asks, "Does she knows how to read?" or "Does she understand what we're talking about?" A journalist we met was very surprised that I was accepted to the faculty of Journalism at the University because at the time when he studied there, which was 50 years ago, his friend was not accepted because he stammered. 

 

FIRST JOB
 

In May 2007, next day after I got my certificate of Secondary Education, I started looking for a job. Day after day I traveled by myself, struggling with high curbs, hundreds of steps, and with indifference of people. I got on and off the buses, on which in theory the driver should get out and with a special curved iron rod pull down a special metal ramp, but in practice most drivers did not do that, and the person in the wheelchair tried the best he could to climb to a height of approx. 20 cm with his wheelchair. 

 

Passengers are desperately trying to shove in front of me pretending they do not see me, though they literally have to step over me. I prefer to leave the bus without assistance because many times people have accidentally pulled out the armrests and footrests. Leaving the bus in a wheelchair is also very insecure. Once I fell out of the wheelchair with the risk to break my legs when the small front wheels get between the curb and the bus. But I prefer the risk to assembling a torn apart wheelchair. 

 

I get to the office building and see a high “mountain of steps”. I have to wait for a man to pass by and ask him to help me up the steps. One is in a hurry, another does not hear, the third one helps me in. At the reception desk I leave my resume, and try asking if there’s a chance to get a job, but quite often they do not understand what I say or do not want to understand. Leaving the office, I occasionally hear a quiet, "in the bin!" That is for my resume... 

 

That struggle continues day after day for six months. I started looking for a job in May and found one in December. The first in Eastern Europe Gallery of Art was opened, where they gave work to people with disabilities. It was a three-year contract with an agreement that at the end the administration will assist with looking for employment.

 

Every disabled person was paid 266 dollars with 165 subtracted from the salary for the opportunity to work at the place. Three years later the gallery director told me that the contract is over and they cannot help me anymore. Once again I had to exist on a 166-dollar pension.

 

 

UNIVERSITY
 

When I started writing my stories were praised by different people, and I began to think about going into journalism and enter the University of Warsaw, which for a few years seemed to be a very distant goal for me. It was the highest peak I reached and the deepest precipice I fell down!
I was the happiest person in the world when in the fall of 2007 my dream came true, and I was accepted to the evening department of the faculty of Journalism.

The classes began in December. I got up at 7 am and at 8 am I left for work. At 2:30 pm I headed for the University, where I stayed till 10:30 pm.
In my department, every day struggled with steps, narrow doorways, and heavy doors with locks and latches. Out of 150 students just two or three helped me, the rest were indifferent. In some guys I felt contempt, and in some girls even disgust.
From about 50 teachers only two had verbal contact with me. They valued the materials I presented and even set me as an example for other students.
I would love to get at least one of the healthy people understand what it means not to be able to normally speak with the teachers, discuss and express your thoughts, which are about to explode your head. I could only listen...
Whenever I tried to tell anything to the teachers most of them told me: "Sorry, I do not understand," and went away.
 

At the University I studied for three years out of five. As there was not a washroom equipped for disable people, I preferred not to eat and drink all day than go through the torments ... But that triggered kidney problems. Besides the washroom and the lack of contact with professors, my biggest problem was that I could not write quickly and do not have time to take notes. The stress and efforts I put into writing every word deteriorated the spasticity and eventually my left hand got badly swollen, I could not move it, and it hurt me badly. The diagnosis was: Radial nerve damage.

Exams were another cause for stress, I knew I would not be able to write as much as was necessary. Because of the swollen hand, for the first time I felt like an invalid: it was only with this hand, that I could eat, dress, wash, and type into computer. All of a sudden I became dependent on mom, even in this!

I took a sick leave for several months. My mother drove me to the hospital to treat my arm, but nothing helped. After being on a sick leave for a long time, I asked the office workers engaged in helping students with disabilities for an assistant who would help me to prepare for the session. Once again, I was refused: "We do not provide such services." At the beginning of my studies at the University, I asked for an assistant who would help me take notes, but was refused. I was told that it would be ...discrimination against other students with disabilities who... do not ask for such assistance.
My hand did not get better, and I several times (before and after the sick leave, as well as while on it), asked the two teachers, whose tests I could not pass, to changed the form of the test to the test with closed questions, but they did not agree. I asked the rector in connection with my health problems, to give me a leave for six months, but in response, I was expelled...
This situation occurred on January 04, 2011. I went with a friend to buy a cell phone as a gift for mom's birthday in a big shopping center “Golden Terraces”. With the friend we discussed the pros and cons of whether to buy it with the contract or with the card, and when I asked the assistant to brief me on the conditions of the contract, he said that he doubted whether I am entitled to conclude and sign a contract being mentally sick. My friend told him that I am a student at the University, and that it is not mental but only a physical disorder, but he still doubted. 

I did not buy the phone because his behavior was outrageous! On what basis he came to the conclusion that I am mentally ill? Just no the basis of how I look and talk!? I wrote a complaint. There was no answer. After the second letter they responded that they regret about the incident, and that the employee was reprimanded, which was not very likely. Discrimination was evident. If I had had to continue at every step to defend my dignity, would have turned gray already!

 

Another problem we had to face was the hostility of the Poles to the Russians which was especially big for my mother, because of her origin and her accent. I know the history and the reasons for such attitude of Poles to the Russians. But how long should ordinary people suffer? My mom has never done anything wrong even to a single Pole, so why (and these days even more than 10 years ago), she hears hateful: "Go back to Russia, such and such ... Russian! "
At least three times a week, my Mom would come home a ball of nerves after coming across such an attack. She told me how people react to her accent and often cried in despair!  Each trip on public transport is more than stressful for both of us because people look at me as if I were a UFO, and it is better not to talk in Russian – verbal offence is sure to follow.

In September 2011, while I was already in Canada, I raised the topic of discrimination in Poland with the people I knew. It turned into a heated discussion, and I felt persecuted by the people I conceded my friends! One of them wrote that “it was my brothers who killed the entire Polish intelligentsia at Katyn.  You write that your mother has done nothing - no one is accusing her of this, but history clearly shows who contributed to this. "

 

 

DISCRIMINATION
 

I think about it as physical and mental discrimination! Lack of money to accommodate the streets and buildings is not discrimination. But we can talk about it, when it comes to callousness of people ... When an officer does not want to listen to me, because I do not speak "clearly".  When my friend was refused by the Registry Office to register her marriage, because she speaks like I do and of the spasticity in the whole body she was conceded to be mentally retarded with no right to get married. When the priest, who speaks about God and love to his neighbor, forbids me to eat with him at the same table.  When you are refused a job because the employer is not aware of the fact that a disabled person can do many things even with severe spasticity...

When my mom dies, in Poland they will send me to a house for disabled, (as they think I cannot live alone), where they put people with all kind of disabilities and of all ages. They are there without any rights, more like plants than people ... I read a lot about the conditions in these houses.

 

 

DREAMS

My dream is to create:
A school for wheelchair dancing
Section of rock climbing for disabled people
Portal – for Polish and Russian (and when I learn English) for Canadian and American journalists with disabilities.

Unfortunately, in Poland it is not possible ...

 

 

 

I live with my mom in Canada [Vancouver] from 2011.

 

September 24 2014 my friend Yelena Yermolenko and I, we recorded Wheelchair Dance Sport Association Canada WDSACA https://www.facebook.com/WDSACA . This is the first and only foundation wheelchair ballroom dance in Canada.

 

October 15 2014 at 10.30 am. my Mom and I, we got a Permanent Residence in Canada. It's most important day of my life!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

October 24-26, 2014 with my last dance partner Dima Sumchenko, we got gold medal and Award Inspiration at dance competition Rocky Mountain Grand Prix in Calgary.

 

NOW!!! I would like to learn English, then I would like to go to college.

 

Olesya Kornienko