People with disabilities should be able to interact on an equal footing: without pity or sympathy. But besides inequality, there are many barriers in their lives. These are not only physical, such as the lack of regulatory ramps, but also stereotypes and judgments that still exist in society.
It is prejudice that causes discrimination and puts people with disabilities in a position that degrades their dignity. However, they can and should be eliminated.
UP.Life interviewed people who have faced the problem of stereotypes and prejudice personally and asked them how to offer help, whether it is correct to talk about the causes of disability, and what phrases can cause irritation.
This article was created by journalists of the Ukrainian Truth in cooperation with the League of the Strong as part of the Country for All project.
The following is the direct speech of the characters.
“Doctors did not ask parents about their mental state”
Olha Lobnova is the mother of a 7-year-old boy, Oleksandr, with autism spectrum disorder (ASD). Because of the war, the family was forced to leave their home in Kharkiv and move to Cherkasy.
Autism spectrum disorder is a condition that can be characterized by difficulties with social and communication skills, sensory perception, movement and fine motor skills, language, and intellectual abilities.
Sasha is the firstborn in the family. My husband and I realized that something was wrong with the child, but doctors could not diagnose it for a long time. My son had not started talking for a long time and was also hyperactive.
Sasha was a planned and desired child, and I dreamed of hugging him, to play and spend time together. He was diagnosed with autism spectrum disorder at the age of 4.
The biggest problem was that no one supports parents in such a situation, no one explains the essence of this condition and no one gives developmental forecasts. For some time, my husband and I were alone with the problem, but we supported each other.
We had to rebuild our life for our son. The first year we did a lot of things that did not bring the expected result – sensory classes, speech and behavioral therapist, occupational and hippotherapy, swimming pool, etc.
I faced misunderstanding from the doctors who were not competent to make a diagnosis, but pressured me psychologically because of its late determination. Sometimes we come to the doctor and hear whole lists of what our son needs. The only question in my mind is: will I have the strength and finances to provide it?
But the doctors did not ask about our mental state. I think this is a huge mistake, because helping parents can improve a child’s condition.
The beginning of the full-scale invasion scared my 5-year-old son. Sasha had already started talking. He was walking around the apartment saying “Aircraft! Fire! Fire!” I think that my son did not fully understand what was happening, but he felt the general mood and sensed my husband’s and my worries as well. We had to move to the safer city of Cherkasy.
One of my personal wars was overlaid by a full-scale war that affected many people. At the same time, my focus remained on my son – I was very worried about him and his adaptation in a new city.
Autism is not a verdict, and many types of behavior that are characteristic of this disorder are normal even for children without ASD. For example, they can scream when they are not happy or fall to the floor and demand something in a hysterical state.
I kindly ask everyone who sees such situations not to hesitate to offer help with a simple question: “How can I help?”. Because there are situations when there is only one parent with the child, and one needs to give the child water or pick up things that have fallen out of the bag.
The perception of a child with such a diagnosis begins in the family – because if parents do not accept him or her, there will be problems with society. I warn the people around me about my son’s diagnosis, if there is a necessity. For example, when traveling by train.
I advise parents who are faced with a diagnosis of autism in their child to love and accept their child as he or she is. It’s hard because expectations for a child who really doesn’t owe anyone anything are destroyed. Therefore, it is worth to unite as a family and consult specialists – a psychiatrist, neurologist, neuropsychologist. And then to follow an individual correctional program.
I am inspired by parents who have achieved success with children with ASD. They can go on a trip, go to the swimming pool, teach them to play a musical instrument, or take part in sports competitions. So I wish you not to give up and try new activities. Nothing is impossible – you just need more time.
The ramps are the biggest problem
Pavlo Yalynetskyi from Ternopil region is 18 years old. He was born with a spinal hernia. Doctors removed it, but could not save the nerve in his spinal cord. As a result, the boy was unable to walk, said his mother Maria. Now Pavlo is studying in Kremenets.
I have three sons, Pavlo is the youngest. He was born with a congenital spinal hernia. The doctors removed it, but the neoplasm had already affected the spinal cord and pinched some nerves. As a result, the guy has never felt his legs below the knee.
The doctors said they did not know how to help a child with such a disorder – there is no treatment for it. Together with my husband, we took our son to massages and physical training to work out his limbs.
Since childhood, I have taught my son that people may not understand his disorder, look at him askance, turn away, etc. But fortunately, school was normal.
The main problem we are facing are ramps. We live in the village, and there are none. Pavlo studies in Kremenets, and there are no ramps either. Sometimes it happens that there are only 1-2 stairs at the entrance, which is not an obstacle for most people. But for a person in a wheelchair, it is a huge obstacle.
Every day the father takes his son to Kremenets because it is impossible to learn to play an instrument or conduct online. He can see the movements in real life, communicate, and remember the information better. His classmates communicate well with Pavlo – they have fun together, but he cannot go for coffee with them because there is no accessibility for people in wheelchairs.
Teachers at the Kremenets Regional Pedagogical Academy named after Taras Shevchenko do their best for Pavlo. He plays the piano, and they hold classes with him in those classrooms where it is more convenient for him to enter in a wheelchair.
Some lessons are held in classrooms that are impossible to access, so his father folds the wheelchair and takes it to another floor, and Pavlo crawls up. The boy has well-developed arm muscles, and he also has fortitude.
Sometimes I look up to him. When I feel tired and powerless, Pasha always encourages me and says that we can do this! This is another reason to be proud.
“I live the same life, with the only difference”
Oksana Maksymiv, 39, has been using a wheelchair since she was 13 years old. When she was a child, doctors diagnosed her with myopathy, a disease associated with metabolic disorders in muscle tissue. The pathology also causes muscle “failure”, which makes Oksana unable to walk.
The perception of society begins with the individual: to what extent he or she accepts things in oneself or makes complexes out of them. These are often opinions imposed by relatives or family friends.
The first year I was in a wheelchair, I almost never went out because I felt “special” because of my disease. But after a while, I started to communicate with my peers, meet them, and felt that I was not alone with the problem.
Although the streets of cities are a real jungle where you need support. Every day I face a lot of physical barriers – stairs, pavement, transportation, etc. But the simple question “How can I help you” often comes at the right time.
At the same time, I am annoyed by the pity with which people sometimes look at me or are concerned about how I live and what I do. Some people are even surprised to hear that I cook or embroider. But I live the same life, with the only difference that I spend it sitting down.
About 10 years ago, I was looking for a job, and one of the companies in my hometown of Cherkasy announced a recruitment drive for a call center, including people with disabilities. I was rejected on the spot because the office was to be located on the 6th floor, and according to safety regulations, a person in a wheelchair could not go higher than the ground floor. But even on the ground floor there was nothing for people with disabilities – no ramps, no toilets, no access to the kitchen. So since 2016, I have been working remotely and I am proud of it.
A person who finds oneself in a wheelchair should not give up, should not withdraw into themselves and should not focus on the opinions of others. You need to find the strength to go on living, because life is beautiful.
“First the person, then the disability”
The main need of people with disabilities in Ukraine is to be visible and normalized in society. This is one of the conclusions of the national sociological survey on the perception of people with disabilities in Ukraine, which was conducted last year by the public union “League of the Strong”.
“People with disabilities want to be active co-creators of change, they are ready to talk about their problems and help make places better for everyone. Another request we have identified is the desire for society to change its vision of disability, because now mostly Ukrainians feel sympathy.
However, people with disabilities themselves face an indifferent, wary attitude, filled with excessive attention to external aspects of disability. It is important for us to eliminate not only external barriers but also such difficulties in communication,” – explains Daria Sydorenko, executive director of the “League of the Strong”.
According to Daria Sydorenko, when we talk about the correct terminology, there is one basic rule: “First a person, then a disability.”
“In fact, this is a key principle that should be followed when communicating with people with disabilities as well. We must see a person in front of us – respect his or her dignity and personal boundaries,” – the executive director of the “League of the Strong” notes.
In practice, this means:
- always ask if a person needs help before touching a wheelchair or other assistive technology;
- speak directly and respectfully – do not speak about the person in the third person with those who accompany them. If you are interested in something, try to make personal contact;
- listen carefully when talking to someone who has language difficulties, be patient and attentive. Wait for the person to finish their sentences and do not finish for that person.
The article was created within the framework of the Empower Ukraine project with the financial support of the German Federal Foreign Office (GFFO), CBM, and the European Disability Forum. The views expressed in this publication are those of the authors and do not necessarily reflect the views of the financial partners.