CAN’T BE HEALED JUST LIKE THAT
Vitalii Pcholkin is the CEO of the Active Rehabilitation Group NGO, a member of the Kyiv Rugby Wheelchair Team, and the founder of the Invafishka and Paralichnenko projects.
- In March 2010, the Convention on the Rights of Persons with Disabilities, which guarantees equality of opportunity and accessibility, came into force in Ukraine.
- New construction rules for inclusivity have came into effect in April 2019. All public and residential buildings, premises, and public spaces should be equally accessible for low-mobility groups.
- In 2019, the Ministry of Health of Ukraine introduced new positions of physician for physical and medical rehabilitation, physical therapist, and ergotherapist.
“We are all one accidentaway from a disability,” they say. That’s what happened to me. I am from Yevpatoria, I lived all my life by the sea, and at the age of 19 I jumped from the pier recklessly.
Now I know that in such cases, you must lay the injured person on the ground and call an ambulance. You should never move the person or make him or her sit up. Back then, in 2007, my friends pulled me out of the water, put me in a car and took me to the hospital.
I realized quite quickly that cervical injury is serious and it can’t be healed just like that. I underwent rehabilitation, I tried to exercise on my own, I learned to eat, I found a job on the Internet. Then I learned about active rehabilitation camps. This technique was invented in Sweden in the 1970s and has been practiced in Ukraine since the 1990s by the Active Rehabilitation Group (ARG).
I was extremely weak when I first came to the camp. On the first day, I fell from my wheelchair. On the fifth day, I couldn’t use my hands, but eventually it improved. The main thing that the ARG camp gave me was a belief in my own strength and the realization that I can still live an active independent life despite my injury. It was there that I first played rugby in a wheelchair.
Information about the ARG was passed around by word of mouth. I understood that many people who had sustained spinal cord injuries did not know about it. To promote the project, I made a website for the organization, and then I became a trainer and a camp organizer. Subsequently, I even resigned from another job to focus fully on development of the organization.
The first principle of ARG is peer-to-peer support. We invite trainers who have the same injuries as the participants.
One of the important skills is to know how to fall from a wheelchair. It happens sometimes, and we should first overcome fear and second avoid injuries. We understand that there is no money in Ukraine to quickly rebuild cities, so we do not recommend waiting for ideal times, but rather that people train themselves to overcome obstacles, to cross kerbs independently, to ask for help properly, and to explain how to lift a wheelchair, because people often pull the wheels, which cause the user to fall from the wheelchair. A wheelchair should be held by its fixed parts and they must not be disconnected in the process. The user should be asked first.
We organize dancing during the camps, and we demonstrate various dance moves on a wheelchair. On the first day, the participants watch carefully, and on the last day they are already trying to repeat it: some of them do succeed.
People are often ashamed of their disabilities and do not upload pictures to social networks. But we make many beautiful photos that they would want to post. And when their friends make supportive comments under these posts this encourages them a lot.
In addition to the camps, the ARG has a First Contact programme. We learn about so-called newcomers with disabilities, we come to the hospital and help them pick a suitable wheelchair, tell them how to do certain things, provide moral support, and communicate with family members. By the way, I met my wife-to-be Uliana when she came to my hospital for the First Contact.
There are very competent neurosurgeons in Ukraine, they do complex surgery, but they are not always interested in what happens to the patient afterwards. There are only two nurses for every ten hospital wards. They do not have enough time and often are not able to properly turn and move patients to avoid bedsores. And unfortunately, the doctors do not take physical therapists seriously. While there is no magic pill that will put on your feet, properly scheduled regular exercises can help.
A positive trend is that the Ministry of Health has introduced physical therapist and ergo therapist positions. These are the professionals who help individuals to relearn how to perform daily activities in the context of physical disorders. That is, they teach the person to move from a bed to a wheelchair and back, to eat, to put on socks (it took me half a day for years after my injury), to plant flowers, to play rugby: everything depends on the patient’s wishes and ambitions. Uliana and I teach a course of lectures and practical sessions for future physical rehabilitation specialists.
The ARG also has workshops for health care professionals. We help them to better understand how a person feels in a wheelchair, and how to deal with various intimate and hygienic issues.
Eighty per cent of patients with spinal injuries in hospitals and health resorts are taught to urinate just by turning to their side while still lying in bed. What kind of active life or relationships are we talking there? We explain how to equip toilets so that the patients can go there by themselves.
Recently, I met a man who is a professional athlete, he has had great results and he had been invited to compete abroad. But the problem is that because of his disability, his mother helped him with all his hygienic procedures for the last 15 years. She used to give him enemas, and so on. And there was no money to cover the travel of someone to accompany him. I just explained to him on the phone how to handle everything on his own, and it all worked out for him.
It is often difficult for family members to understand that it is important for persons with disabilites to do as much as possible independently. I have been living with my wife for seven years, but every time I go somewhere with my dad, he tries to help me get into the car, fasten my seat belt, and rearrange my legs. Because it is easier for him and he thinks: “Why should you suffer?” I really appreciate his concern, but I can do these things for myself.
To live actively, you should really want to. You should make an effort, be aware of your rights and stand up for them. People with spinal injuries all over the world can drive cars safely, with special equipment that compensates for dysfunctional fingers. But in Ukraine, the law on driving has not changed since 1975. For three years, I was defending my right to drive a car, and eventually I received a driver’s license for a car with manual control. But my case is an exception, and we are now working to address this issue at legislative level.
I think we all sometimes have to “expel an inner feeling of disability,” I even started a Facebook page Paralichnenko for that.
But many people prefer to stand idly by. Well, you have disabled legs, it’s difficult for you to get stuff from a shelf, but your hands are Ok, your head is Ok, your life is livable. You just have to learn. In addition, there are lots of examples and tips on how to adapt to different tasks. I developed the InvaFishky website where we share various lifehacks that help people with spinal cord and cervical injuries to become as independent of external assistance as possible. The tips concern various issues – from special forks to sensitive touch screen styluses, baby furniture, travel and sex lives. Me and my friends are now developing a business model for a social enterprise that will manufacture and sell this kind of thing online.
I can see Kyiv is changing for the better. They keep building ramps – not all of them are adequate, but it’s great that it has started.
Before Eurovision, I was one of those who had to correct the errors of the Livoberezhna underground station reconstruction. At first the doors were not wide enough, but then everything was fixed, sound beacons were set up, contrasting elements for the visually impaired were introduced and a lift installed. There are nuances: workers often lose the keys to the lift, and do not let people with heavy suitcases or prams use it: they tend to say: “Do not enter, the lift is for the disabled.” This is wrong, the lift must be accessible for everyone.
Recently I was traveling on the underground and I asked for help. And I heard an underground employee calling his colleague and saying: “Hi, I’m helping a low-mobility passenger, please meet him at your station.” But I understand that it is difficult for the older generation to understand why it is correct to say “person with disabilities” rather than “disabled”, “handicapped”, or “special needs.” They don’t understand the difference. And the younger generations, on the contrary, listen, advise, and often write to me on social networks. They ask how to properly refer to people like me, how to help us. That’s fantastic.