I heard my baby’s cry and smiled with some effort. The surgery was still not completed and the doctors were “tinkering” with the stitch. I was lying relaxed, feeling nothing, seeing only a partition of blue cloth and a bright light of lamps in front of me. I had just recovered from anesthesia, so I couldn’t move my legs and arms at all, each muscle grew stiff and heavy, a cold saline solution was being infused into my vein from an IV tube, but I was conscious and understand what was going on around me. The anesthesiologists stepped aside for a moment and then gave me a sweet smile. The doctors caringly helped me turn my head to the left, and the midwife brought the swaddled baby up to me. Its little, dark eyes were looking at me so seriously. My son was examining me discontentedly, as if he were offended and wanted to say: “How’s that, mommy? Why am I here? It was so warm and comfortable in your womb and I was given good food there. And I feel cold and scared outside. And they’ve even smacked me lightly. It hurts. Mommy, mommy, why have you allowed them to deliver me?”
I only smiled faintly in response and squeezed my husband’s hand tightly. He had been present at my labor.
Kostya [a diminutive form of the name Constantine in Russian] gently took the baby in his arms and said:
“Happy birthday, our little son!”
A disabled family. What is it like?
Let us introduce ourselves. This is me, Xenia Ryabova, and this is my husband, Constantine Vorotnikov. We are a disabled family; at least this is what most people call us. And we have two children.
We both have cerebral palsy (CP). Constantine has a mild form of cerebral palsy, while I have a more severe form of this disorder. CP affects the motor area of the brain’s cerebral cortex that directs muscle movement. But you still can learn to live with this disorder provided you develop some skills. However, CP is an acquired disease not a congenital one. So we didn’t pass this condition on to our children.
First of all, I would like to point out that we are not in a “vegetative state” and, therefore, we need no caretakers. People with CP can live on their own. Although I am a wheelchair user, I lead an active lifestyle: I go in for sports, write articles, draw and even help others. And, first and foremost, I don’t have any intellectual disability and I have found myself despite my physical impairment.
Both Constantine and I were much desired and beloved children of our parents who always refused to recognize us as “incapable”. It is so important to be with the people that believe in you and support you.
Unfortunately, society is still not ready to accept people with disabilities like us in many ways. People tend to fear those who are not like them. True, the general attitude towards the handicapped is changing here, but it is still a slow process.
Unfortunately, some still declare publicly that the disabled “should be exterminated” because “they can’t be any help to the society”… And every time these offensive words really hurt me and the whole disabled community.
What if a woman expecting a baby with Down syndrome accidentally hears such talk? It may serve as an incentive to have an abortion or refuse the baby!
I would like to publicly address those mothers and declare that it would be very silly to refuse children with disabilities. Children with Down syndrome can become fine actors and musicians; those with cerebral palsy can become writers, artists, psychologists, atheletes, journalists and even models; those with autism can become highly skilled in music, mathematics, and physics. Parents of handicapped children must double and triple their efforts to develop and educate them. And, most importantly, they should raise their kids not as “disabled persons” but as individuals who are not afraid of difficulties and are responsible for their actions. The Almighty has given you an opportunity to become mothers, but the lives of your disabled kids largely depend on you.
Disability is not a cross, it’s God’s gift
Maybe I am not one to judge, but it seems that we, disabled children, are not a cross to bear and not a punishment to our parents for their sins, as some believe. Rather, we are their reward, their path towards salvation. These are not my words; I first heard them in a sermon by one priest and remembered them forever.
This priest said that people like us come to this world so that others could become purer through supporting us, so that they could become more merciful, kinder and better. We help people and the society become more human. He also said that the Lord loves us and sends us where our help is needed. After suffering much in this life we have a greater chance to go to Paradise, but we must help others avoid spending eternity in hell. This is the main mission we carry out throughout our life journey.
Those who claim that the disabled are not contributing members of society are wrong. By our example we teach others to find the determination to never give up and always go forward. Compare how many gold medals our main national team and the Paralympic team won during the Sochi Olympics. Thirty against sixty! And what about disabled artists and journalists? They perceive the world in a special way and have a special sense of the word. And our perseverance, strength of mind, and will power can only be admired. Whenever non-disabled people lose heart and give up the fight, those with disabilities keep struggling despite their difficulties. This really makes us unique.
What do we, a disabled couple, do to benefit others? We show people that there is genuine love and it cannot exist without mutual respect, mutual understanding, and mutual assistance. Besides, I have been helping many beginners in hippotherapy and therapeutic riding coaches by counseling them concerning methods of work with the disabled and necessary exercises that I know from my experience. I have helped many young disabled women become mothers, given them advice as to what their first steps should be and to whom they should appeal. I even wrote some articles on this theme for a medical website. Constantine helps others by repairing computers and developing websites. He does everything conscientiously; for example, he never “invents” nonexistent technical problems in order to squeeze more money out of his clients.
The most difficult thing in the life of every disabled person is to learn to believe in yourself and to become fully independent—physically, financially, in your opinions and worldview.
I will be frank and say that our family does have problems. These are chiefly money issues. At times we don’t have enough resources for our needs. For instance, to practice equestrian sports I have to look for sponsors and write numerous applications all the time, even though I am very famous in equestrian sport, a winner of many Russian and international competitions and even organized the first sport team of disabled horse riders in the Moscow region in 2002. And we are denied any foundation support… Many think that sport is a mere hobby, entertainment, but they fail to understand that it is my life.
Another acute problem is employment. It is next to impossible for both my husband and me to get regular jobs, although I am a professional journalist and he is a licensed engineer. Nobody wants to employ disabled people! At the present time we live on state benefit payments, casual odd jobs and donations of generous people, which we really appreciate.
But our main problem for the moment is that of housing. We are not supposed to get any flat according to our social programs and we spend most of our incomes on rent. In Podolsk [an industrial town south of Moscow] it is cheaper than in Moscow. If we had our own accommodation, half of our problems would be solved.
Glory be to God, there are so many kind-hearted and sensitive people in the world. Volunteers come and help us, though we try to take care of domestic chores ourselves. I clean my room, Constantine does shopping and cooking. Should I have any problems, I always ask him to help me. If we need to have something delivered from a shop which is far away, we ask volunteers or our neighbors to do it. The neighbors are very good and ready to lend a helping hand to us at any moment.
Despite the numerous challenges I think I am a very happy person. I am a mother and a wife. I prayed hard for these things in my life, for I wanted to live a normal life. I have never considered myself “physically impaired”. I even had an ideal man wish list. And God answered my prayers and gave me a boundless happiness—the love and respect of my beloved husband and the joy of motherhood. On top of that, I have my favorite activity and good friends. Can you feel unhappy, if you have all of this?
* * *
On December 8 last year Xenia made a triumphal return to Paralympic sports after a year of her horse’s strenuous exercise. In the Kheperia Open Cup tournament (it is at the level of Russian national championships) she won two gold medals, namely in riding and dressage to music. Xenia hopes that this victory will enable her to find a permanent benefactor who will have faith in her strength and help her move forward to her dream.
If you wish to help Xenia and her family, here is the card number of Sberbank of Russia:
4276 8381 3681 9606