International photo exhibition "Accessible environment for all" (online format) 2020
For the first time Nizhnekamsk is hosting a large-scale international project in the framework of cooperation between the Swedish Institute, the ANO to support creative initiatives "O.K.N.O." in Kazan, "House of folk art" Nizhnekamsk and ANO "Rubaha" for people with disabilities. The exposition of works “Access Ability Beyond physical
environments” by Swedish photographer Markus Marcetic and his Russian counterpart Alexey Kostromin. 20 photos introduce visitors to the exhibition to people with disabilities living in Russia and Sweden. Each photo is accompanied by the story of the hero. These are stories by Russians and Swedes about their lives, how society accept them, their achievements, goals and dreams. Among the heroes are athletes, writers, programmers, priest and journalists. The idea to illustrate the life path and achievements of people with disabilities came from Swedish photographers. Since 2015, the exhibition travels to cities of Russia (Moscow, Cherepovets, Pskov, Veliky Novgorod, Arkhangelsk, Kaliningrad, St. Petersburg, etc.), it is shown in Georgia, Turkey, Brazil and the UAE. The collection in each city is complemented by new stories of local residents. It is a great honor for "Rubaha" to become a part of this exhibition and to present photos of our city residents - young and bright, purposeful and active - heroes of our photo project "Shadow". “This exhibition is evidence that its authors are not in words, but are actually promoting the principles of humanism and tolerance. This exhibition is about the fact that all people are special, everyone has their own opinion, views and interests. These photos give people with disabilities a chance to believe in their abilities," said Swedish Consul General Erik Hammarskjöld at the opening of the exhibition in Pskov in 2015. Giving everyone a chance to be seen and heard is one step towards the goal. And the goal is simple - to enable people with special features in development to live a decent life. They fight for this equality.
Nora is 16 years old, and one day she'll win the Paralympics. She's been swimming since early childhood, and she's been competing since the age of 5. "I'm doing a great job," she said, and she probably has medals to back that up. Nora also plans to become an interior designer, and she enjoys learning. Nora and her best friend Irma often spend time shopping, going to the cinema or just staying home and listening to music. She wants to start doing street dancing.
At 21, Sarah published her first novel by Gloria, written in the style of a Gothic novel. Sarah is part of the feminist community that publishes books. She plays the flute, teaches people to read and write in Braille, and dedicates all her free time to art and culture. She earns part of her income from literary studies.Sarah lives in an apartment with a guide dog.
The girl is frustrated that she never knows if she will be allowed into the theatre, a concert or even a cafe, as Swedish anti-discrimination laws do not apply to guide dog owners. But she prefers not to dwell on her vision problems because there are so many reasons to be happy in life!
Kenneth is a man in his 50 years old who always sees the sunny side of life. He works in a fast food restaurant and loves to communicate with people - both customers and colleagues.
When Kenneth was seven, a brain tumor stopped him growing. The tumor also caused his puberty to begin as a child. Since then, he has had his share of discrimination, but that never stopped him from fighting for the goals he wanted to achieve. Working, gardening and knitting are some of the things he is particularly proud of. Despite his severe dyslexia, he learned to read and write; he only does this by holding the text upside down.
Olga lives in a quiet district of St. Petersburg, in a small apartment on Novoizmaylovsky Avenue, which she loves to walk on, which she knows very well and which is very beautiful. She has never seen him. At school she was always told that blind people in Russia have three ways - to become a teacher, a lawyer or a masseuse.
She chose the latter and for 20 years now she has been working only with children whom she loves very much. She says that they, especially the youngest ones, always reciprocate her. Much because they don't know about her illness, and it's much easier this way.
Olga loves jazz, reads detective novels, loves perfumery and once a month goes to the bathhouse with her family and friends. Together with her husband they bring up her daughter Arina, who is taught to be independent from childhood. Olga considers this to be very important: only this is the only way to live - counting on yourself and no one else.
When Olga was born, on her grandmother's advice she was named after an angel who now helps her. She calls herself a lucky man. The only thing she lacks for happiness is her own house, where she would do everything with her own hands and arrange everything as she wants - every detail, every little thing. It would be a very cozy and beautiful house.
In the orphanage where he grew up, teachers often occupied the children with television. Little Jura suddenly watched everything that was shown, and even then secretly dreamed that one day he would grow up and himself would be on the other side of the screen. Three years ago there was a call in his apartment - he was invited to work for a city TV channel. Now he's an editor at the information service. Yuri is sure that in order for the wishes to come true, you need to know exactly what you want and very well your dream to formulate. So, during the Olympics-80, which shocked him as a child, he realized that he wanted to carry the Olympic torch - and 30 years later did so. In the same way, he has always loved films, and now he is a member of the selection committee of the Cinema without Barriers festival. For many years Yuri heads the society of disabled people, where he is engaged in formation of public opinion. He is sure that the problems he talks about in Russia arise not because of politics, but because of people, because of their mental stinginess: people have not yet learned to see others as equals and love them. Yuri has a tradition. Every year on December 25 he stays alone at home, puts a collection of small houses on the table, lights candles in them and sits in the chair for a long time. This reminds him of Christmas America, where he was once lucky to visit and which gave him an association with warmth and comfort. Sometimes he really misses them.
Connie was diagnosed with mental retardation as a child. But he does not like it when people do not treat in a special way - because he and his disease - are different things. He doesn't feel limited by its scope. He has a job, a girlfriend and a circle of friends.
Four days a week, Connie takes a bike or bus to work from his apartment in a Stockholm suburb. He works as an information officer for an organization that helps people with intellectual disabilities.
Connie says, "In the 1950s, when I was growing up, most people didn't talk about these things. People realised much later that it was necessary to talk openly about mental disorders."
Polina has one important rule that she tries to follow - if you do something in life, you do it well and in no other way. She's 19, her diagnosis is a spinal hernia, and now she spends most of her time on the tennis court. Polina grew up with two brothers, but her parents never treated her differently. At the age of 14 she enrolled in the tennis section, where the coach quickly saw her character and offered to play sports seriously. Now Polina trains several times a week and participates in international tournaments. One of her biggest achievements is winning the World Cup qualifiers.
She loves adventure literature, learns English on her own and writes oil in her spare time. Most often - the views of her native St. Petersburg, which she considers the most beautiful on earth. In the future Polina would like to get an art education. Sometimes Pauline lacks patience - I really want everything to work out quickly and immediately, but she knows that quickly, especially in sports, nothing happens. It's a long way to go, but if everything works out, her dream will come true and she will go to the Paralympics in Rio de Janeiro. And then she'll come up with a new dream. Because she thinks you can't live without it.
When I asked her what kind of person she thought she was, 26-year-old Lovisa immediately replied "happy". She lives in the present and enjoys nature and exercise. Cell phones make her nervous.
Lovisa was trained as a work therapist, but at the moment she is earning a living as a host of one of the most popular children's shows on Swedish television. Being a young woman with cerebral palsy, Lovisa thought that this work would give her a great opportunity to show her children a more diverse picture of people in wheelchairs. "Sometimes sitting in a wheelchair is very difficult, but that doesn't mean I'm less happy. When I stumble upon an obstacle, I think about how to overcome it, not whether I will overcome it at all".
Laurenzio likes to always be in the public eye. And even though he doesn't work from nine to five, his day isn't celebratory. He gives lectures, participates in all kinds of events and fashion shows. And now Laurenzio is passionate about a project that talks about people with disabilities working in the cultural field. In the future, he hopes to spend more time with those who need help. Laurenzio knows almost everything about every resident of Bolnes, a small town that became his home back in his high school years. The young man came to Sweden at the age of 11 when he was adopted from a Romanian shelter. He starred in a TV series, in many films, was the main character of the documentary. And after a while, a book about Laurenzio will come out. He is convinced that the lives of people with disabilities should be covered more in the media and various cultural areas. This is an effective way to overcome the prejudices in society towards such people.
For 22-year-old Johnny, the line between work and leisure is very blurred. In parallel to his main job as a web developer, Johnny also runs his own business selling accessible wheelchair ramps to small organizations. He became a private entrepreneur back in high school, working with his friend on web programming. Johnny also has a strong interest in sports and plays a ball game twice a week adapted to people in wheelchairs.
Johnny has spinal muscular atrophy, which leads to exhaustion of muscle mass and limited mobility. He was diagnosed when he was two years old. Johnny thinks that Sweden has gone a long way in terms of accessibility for people with disabilities and that existing laws are an excellent starting point for further work. He has a very close relationship with his family and he says he "always had a great balance between friends who walk and friends who need a chair to move around".
Lyudmila Vasilyevna Pojedaeva
People were six years old when the war started. Almost immediately it got into the first wave of evacuation, which became fatal for many children - by mistake, the entire echelons went not in the rear, and towards the enemy. It was then that a tragedy occurred that led to her disability 40 years later: twice she was bombed. Together with other wounded she was returned to besieged Leningrad. Ludmila tried not to think about the war, but at 16 she started to write down everything she remembered. And although her father ordered the records to be destroyed ("they can be imprisoned for this"), she hid them, and 40 years later dared to get them. The memories were published and had already survived 5 reissues. In 1961 she graduated from the Philological Faculty of LSU and received a specialty in hydrology: she always believed that it is necessary to deal with both for the soul and for the service of society. For several years she worked on expeditions and considers this time the happiest in life. She lives alone in a small apartment on the ninth floor. Says the most important thing is to pass on the memory of the war, and also to be independent until the last one. She's got friends all over the country who call a lot - that's very supportive of her. Ludmila believes that every person has a double: when she was a little girl, she thought that one day she would reach the edge of the earth, sit on the edge of the cliff and talk to a little girl like her in a beautiful dress.
Nicklas isn't one of those who doubts. When he was a teenager, he left home to go to sports school, which means to live independently.
He is the winner of 21 medals in Swedish championships in wheelchair racing, six of which are gold. He still trains four or five times a week, but no longer competes.
Niklas is currently participating in a social entrepreneurship programme that aims to investigate the availability of various facilities in public places. Ideally he would like to combine work with his interest in sports and in the future he would like to start a family.
Elaspa is a 9-year-old boy who lives with his parents and younger brother. He wakes up first in the morning and while others are sleeping, watching TV or playing video games. The little player is very proud of his success in Minecraft. Today Elaspa speaks three languages: Swedish, English and Creole. Hard to believe, but he didn't speak at all until almost five years old. The boy was diagnosed with mild developmental delay and is currently attending a school for children with special needs, although he is studying in a regular school program. Elaspa likes to walk outside, so she often spends time after school on the playground with her best friend. He runs fast, enjoys swimming, basketball and dancing. And before going to bed he makes notes in his diary.
Once a year, journalist Martin leaves all his cases for two weeks. All this time he dedicates to flying a hang glider, a manned aircraft without an engine. Flying since childhood has been his big dream.
To fly an aircraft without an engine, you need to control three rudders: two of them are for hands and one for both legs. Martin controls it with a prosthetic leg.
Twenty years ago he had an accident during a train ride, which resulted in the loss of his left leg. Although Martin never felt discriminated against himself personally, Martin was asked questions on this subject: "I may be asked if I am really able to do certain things on my own. This question was asked before I was first appointed as a foreign correspondent for a daily newspaper," he says.
However, as for the situation in general, Martin believes that people with special needs should talk more about themselves: "I would like to see more lively discussions where people with disabilities can express their opinions and needs. It is easier to complain when everything has already happened, but the construction of facilities without special access for people with disabilities should be opposed before it begins. I would like more people with disabilities to take action.
Vanya's 16, and he has a few important things in life. The first of them is the trail that gives him freedom. Thanks to this tricycle, the guy, despite his cerebral palsy, has the opportunity to make small trips through the streets of St. Petersburg. During these travels, Vanya often thinks about programming. The computer is the second and most important thing in his life. This summer he wrote a program that is already being used in his school: thanks to it, children with special needs can use the computer with just one button. His other projects are the site "Fotolok" with the help of which anyone can choose a place on the map and add photos, his own online radio, and a new programming language that he is already working on. Vanya appreciates honesty and straightforwardness in people and does not like laziness: he participates in competitions for the game "Bocce", listens to rock, is interested in literature, solves logical problems, writes on social networks about his views and often shows categorical and principled. He is studying according to the regular program, but in a specialized school, and he is worried that the program is stretched, which means he is wasting his time: to do in his life he wants as much as possible. At least - to show his programming language to the world, to marry and educate his three daughters, whom Vanya promised to name after his teachers.
Sahar heads a company that provides various services to people with disabilities. Such help is very important in today's society, Sahar said. That's why its own company provides services to people with disabilities. In its time, Sahar has faced many challenges in finding a job. "I was denied because of who I am: my name, my immigrant status, my sexual orientation." "Now I'm being judged for being a workaholic," she smiles.
For Sahar, it is clear that people with disabilities have the same rights and responsibilities as others. It tries to speak out against injustices against these people; their discrimination and isolation from the rest of society is not the least of these negative manifestations.
As a child, Sasha often visited the village at his grandparents' place. They served the Soviet government, but secretly believed in God and read the Bible. Sasha was interested in another thing: he just went to school for the deaf and mute and wanted to be successful. When he was 14, his mother asked him to be baptized, and he agreed. A few years later, just as unexpectedly, one of his friends invited him to church for service. Now Alexander is 39, and he serves as an altar boy in the temple. Before that, it was painful for him to see those who could not hear, after the first service they left for good: they did not understand much, and there was no one nearby who could help. Then he thought about what he could do and went to the seminary, where he now studies on an equal footing with the others. Alexandr could become a successful athlete - he played volleyball for the Russian national team among the deaf and mute; he could become an artist - since childhood he was fond of mime and even performed at international competitions, he could earn both his gold hands and his college education. But he decided otherwise. Now Alexandr coaches a volleyball team and sometimes repairs apartments to order. But the most important thing for him is serving God. He is learning to become the first Russian deaf and mute priest, and wants people who can't hear to come to church and stay there forever.
Birgitta is around seventy years old and, despite her retirement age, she is actively involved in voluntary work, mainly concerning the rights of women and people with disabilities. It gives her great pleasure to see young people fighting for their rights.
Birgitta was born without one hand and with limited mobility of the other. She developed scoliosis, which affects her lungs badly and makes it difficult to move. Later, she hurt her hip in a car accident. Since 1994, Birgitta has been assisted by a personal assistant. Throughout her life she has seen tremendous progress in the social sphere, but says: "Unfortunately, policies related to the rights of people with disabilities have not progressed at the same speed as the struggle for children's rights, or gender equality, or any other branch of human rights". Part of the reason for this is that there is a deep-rooted belief in society that people with disabilities need only be cared for. They are not given the same opportunities as everyone else.
Birgitta is married, she is the mother of two children and the grandmother of three. Family is her greatest pride, but she is also extremely proud of her career in social work and rehabilitation. She chaired a national organization for people with reduced mobility between 1993 and 1999. Being able to support herself and take her place in society was essential to her personal independence.
Anna Kean Wyatt
Anna is a 25-year-old student who is seriously concerned about the accessibility of social space for people with special needs. She is a member of non-profit organizations and passionately believes that surrounding objects, buildings and structures can be made more friendly for those whose abilities and the power of different reasons are limited. Until recently, Anna was chairperson of the national organization for hearing impaired children and youth. For her, participation in such organizations is a necessity, a source of good mood and an opportunity to benefit the society.
Anna's hearing problems were found at three years old. At social events such as lectures or various cultural events, she needs a hearing aid or sign language interpreter that is not always available. Anna has been living in a team for three years now - a community of people who live in one house. She has a degree in macroeconomics, and recently she played roller derby! This is the first time she has taken part in a sporting event and admits that at times the game was quite tough. But she really had a great time.
Bengt was born in 1936 and was a cheerful and lively child. However, when he was eight, he was diagnosed with a degenerative eye disease. By the age of 15, the boy had barely seen anything. But thanks to the tremendous support of his parents, Bengt was one of the first Swedes to move from a school for the blind to a regular school.
Bengt believes that he was very lucky in his life: he worked in many interesting areas and was also able to influence social accessibility policies for people with special needs. Immediately after graduation, Bengt had to defend its right to be a teacher for a year. After that, he changed many professions, and since 1975 he has been chairman of the national association of the visually impaired. In 1982 he was elected as a Member of Parliament and in 1985 he was appointed Minister of Social Development and Family Policy.
From 1994 to 2002, he served three consecutive terms as the United Nations Special Rapporteur on Disability. Bengt believes that the opportunity to read and write has been the basis of his personal and professional development. Back at university, he wanted to pursue a career in music because he loves jazz and plays the drums. And although he eventually focused on theoretical disciplines, his drum set is always at his fingertips.
Availability. Breaking borders
The key idea of this exhibition can be expressed in one word - dignity. To live worthily, without looking at disabilities is a human right proclaimed by the UN Convention on the Rights of Persons with Disabilities. Of course, the struggle for equality of those who are limited in their abilities has not yet been won. But giving everyone a chance to be seen and heard is one step towards this goal. The photos and stories of 14 heroes exhibited here are not the end of the story yet. Since 1968, Swedish schools have had a statutory provision for students with disabilities to receive the same level of education as all other students. In 1989 Sweden was granted the right to vote to all persons who had reached the age of 18. Before that, many categories of citizens with intellectual disabilities were classified as minorities and were not allowed to vote in elections. In 1994, the Act Concerning Support and Service for Persons with Certain Functional Impairments came into force. The provisions of this Act provided for the creation of opportunities for persons with disabilities to live independently and fully participate in social life. This law allowed many people with intellectual disabilities to live in their own homes, and those with physical disabilities to travel with a personal assistant both for work and leisure purposes. Since 2009, Sweden has had an Office for the Protection of Human Rights (The Equality Ombudsman) which works to overcome all forms of structural discrimination in society. The main objective of the organization is to strengthen the legal protection of people who have been discriminated against on the basis of gender or ethnicity, transgender identity or expression, religious or other beliefs, disability, sexual orientation or age. However, it is too early to say that the struggle for equal rights for the disabled can be stopped.
In 2014, Swedish legislation on discrimination was supplemented by a norm on overcoming inaccessibility of infrastructure facilities for persons with disabilities. This change is the result of a three-year campaign for the rights of persons with disabilities, in which participants meet every week outside the office of the Swedish prime minister to protest. In order for people with disabilities to fully experience the benefits of equality in society, changes for the better are still needed - in the environment, in the law and in the attitude of others towards those who need help.
Affordable environment in Russia: from past to present
Significant changes in Russian legislation aimed at improving the lives of people with disabilities over the last hundred years.
By 1917, because of the war, the number of disabled people in the country had increased, and the state developed a system of support for them: pensions were increased, insurance medicine was formed, factories and plants were assigned to medical institutions, and medical and control commissions were established to verify the correctness of diagnoses.
In the 20s, the authorities introduced a system of social insurance for workers and employees: six disability groups appeared, which were soon merged into three. After the Great Patriotic War, many people with serious injuries returned to their previous jobs and worked on a par with the others. Society's attitude towards them also changed: the criteria for assessing disability were revised. In the sixties, people with disabilities had additional social guarantees. They were provided with free education and medical assistance, and were entitled to employment. At that time, collective farmers who had previously had no benefits or pension for disability were equalized with workers and employees.
In 1995, the Law "On social protection of disabled persons" was adopted, which paid attention to individual rehabilitation programmes. In theory, the document absorbed all progressive norms, but in practice it turned out to be raw and was repeatedly refined.
In 1999, the "Union of the Disabled of Russia" was established. Its tasks include protecting the rights and interests of people with disabilities, creating full and comfortable living conditions for them and implementing social assistance programs.S
ince 2003, real estate owners have been obliged to ensure access to their properties for small mobile groups, but in the absence of control, ramps, railings, tactile slabs are often installed with serious intentions of the regulations. Today the status of a disabled person allows a person to receive social benefits - benefits, medicines and technical means of rehabilitation, discounts on payment for housing, vouchers to sanatoriums. However, receiving this assistance in practice is often difficult. Many cities have an "Affordable Environment" program. In Moscow, transport is equipped with lifting devices for wheelchairs, in St. Petersburg, several disabled people are employed as technical experts. In addition, anyone can add information about places available for travel in wheelchairs to a single website. Thousands of people with different disabilities fight for their rights every day. Modern laws are imperfect and often unenforceable, so all positive changes in the protection of the rights of persons with disabilities have occurred and continue to occur primarily thanks to those who are supposed to help.