"In your position, better abortion": Mothers with disabilities about their pregnancy
There are no exact statistics on parents with disabilities in Russia - at least because not everyone wants and is ready to apply for a disability officially. Nevertheless, according to Rosstat, by the beginning of 2017, there were about 12,314,000 people with disabilities registered in the country, and more than seven million of them are women and girls. Attitudes toward people with disabilities in the country are gradually changing, but despite this, many continue to face discrimination. We decided to talk with mothers who use wheelchairs, about pregnancy and childbirth, about the attitude of doctors and what is really accessible environment.
I had an accident in 2006. Ten years ago, when I was undergoing rehabilitation, I could not even think that I would have a child once. Moreover, I will have such a desire and I will not drive this desire away, but will bring it to life.
Doctors did not incline me to abortion. There were a couple of unpleasant incidents, but mostly with old-school doctors: “How will you give birth and bring up? Have you thought about this?” - they meant that I myself was a burden for the family. However, they did not understand that there are people with disabilities, including women in wheelchairs, who will give odds to any person who does not have physical limitations. I am officially employed. I can support myself and the child. I am confident in my abilities, both financially and physically. I have at least three familiar wheelchair women. One of them has three children. I think this is far from the limit.
When I learned that I was pregnant, I attached to the antenatal clinic at the place of registration. There was no special accessibility: there was no specialized bathroom, and in the entrance group there were steps. I coped with the help of relatives, strangers and security guards. As a result, I realized that it would be more comfortable for me to be observed and give birth in a private clinic. I was very lucky, because Mark Arkadyevich Kurtser himself operated on me, for which he thanks a lot. I had a wonderful story, and I believe that it should be so. That your doctor treats you as a citizen, and not as a wheelchair user, a person with a disability or an incapacitated person, there is nothing supernatural. It is clear that in a private clinic services are provided for money. But exactly the same services can be provided in public institutions.
During pregnancy, I flew to the Economic Forum in Sochi with Oliver Jacobi, CEO of Ottobock. She makes strollers. We started a conversation about what are the devices for mom-wheelchair users. I told him that it would be cool if there was a stroller that would be attached to a wheelchair. So I could drive myself and carry a stroller with a child. When my Maruse was already about a month old, Oliver invited me to the office and presented me with a special mount for my stroller along with a child car seat. Up to four months, I did not know any ills: I could move the chair into a car or fasten it back to my carriage. For me it was a salvation. Then, when Marusya grew out of her, I gave it to other wheelchair users.
Playgrounds are a separate story. Sites made to new standards, in principle, are good, and it is quite convenient to use them. But if we compare our playgrounds with playgrounds in Europe or Israel, there is a difference. In Israel, for example, in playgrounds there are slides for children in wheelchairs. On this slide you can not climb the stairs, and go on the ramp. There is also a swing, where you can get in a wheelchair and swing with the help of special tools.
The most important is information. Need more information that people with disabilities exist. Moreover, everyone can become a person with disabilities. We all grow old and our health is not improving. We need to think that at an older age we have to live in the same conditions, in the same country. It is better to change something now, while there is a lot of strength, so that later, when they are not left, enjoy the fruits of their labor.
As a child I got hit by a car and since then I use a wheelchair. From that moment on, my family and entourage were absolutely sure that I would never be a mother. I grew up with this thought. So when my ex-husband and I found out that I was pregnant, it was hard to believe. I was absolutely happy. But instead of enjoying my position, I had to defend my right to motherhood before doctors.
There was a question of the consequences of my injury. In the women's clinic I was sent to the clinical expert commission. At the meeting, the commission suggested to me that the child in my position was a bad idea. I was bombarded with questions: “How will you cope with it?”, “Do you understand that in your position it is better to have an abortion?”, “Healthy women will be abandoned. Do you think this will not affect you?”
I survived the attacks of physicians and received a referral for examination in the republican hospital in Syktyvkar. There I passed the tests and received the conclusion that "there are no contraindications for carrying a pregnancy." On the day of discharge, I was invited to the staffroom room, where I was once again tried to explain that, despite the positive results, I should think well again. Five years later, during the second pregnancy, I no longer had any complaints. Apparently, they thought that I could handle it - besides, at the time of the pregnancy I was married for several years.
My pregnancy went easy. The doctor, to whom I was fortunate enough to get, reacted adequately to my disability and conscientiously carried out her work. She even gave me the key to the bathroom for the medical staff, explaining that it was cleaner. For the rest, I think, my active life position played a big role. I serve myself, and there were no major problems with staying at the maternity hospital. But the women's section is completely unsuitable for women in the stroller. It was impossible to use either a bidet or a shower. So I decided not to risk it and used wet wipes for several days. At this time, other women walked past me several times a day with towels and shower gels. In the postpartum ward, a changing table and cot were not available. These items should be at the chest level of the wheelchair, not the head.
Doctors assigned me a planned cesarean section. When I was in the maternity hospital, I was invited to the office to decide on the date of the operation. At the same time, the doctors suggested that I tie up the fallopian tubes: "Where are you the second child? You would have to cope with one." I was totally against such interventions in my body.
Availability in Ukhta little. I asked for a preferential place in a kindergarten with a ramp, but this received several refusals from local governments. The last refusal was brought to me home and put into my hands personally, so that I "knew my place." On the other hand, the social security agencies went to meet me and identified the social worker. For a small fee, she daily takes and takes my son from kindergarten. Local organization volunteers also help me. Students accompany me to sports training, to the clinic, help me climb the stairs or get to the workplace. I am grateful to each of them.
In my youth I had an accident and since then I use a wheelchair - I gave birth to both girls already in it. I did not encounter a bias of doctors - on the contrary, I was treated positively. I was observed in female consultation number 13 in the area of Konkovo. There, under me, improved architectural accessibility. When I returned there a few years later, pregnant with my second child, everything was perfect: they retooled the toilet and installed a chair with a lift.
During the first pregnancy, my husband and I tried to learn about the experience of other girls in wheelchairs. We realized that at the level of the state or public organizations no one deals with this issue. Therefore, two weeks after the birth of our daughter, we decided to establish the Society for the Support of Parents with Disabilities and their Family Members. I have been engaged in public work since 1999, now I am a member of the Moscow Public Chamber.
Our main achievement is that we have reduced the number of forced abortions. Many girls with different forms of disability had previously encountered the fact that in the antenatal clinic they were sent for an abortion on this basis. According to the Department of Health in Moscow, sixty to eighty women with disabilities give birth each year. But we must bear in mind that many people with invisible forms of disability try not to advertise this. Some hide the disability because of the fear that the guardianship will take the children away. Several years ago, in St. Petersburg, a child was taken away from a woman right in the maternity hospital under the pretext that she was a stroller and, therefore, could not care for a baby. Human rights defenders and public organizations needed half a year to get custody of their grandmother and return the child to the family.
Eight years ago we conducted a sociological survey in Moscow. According to our data, then over 30% of women faced compulsion to abortion. During our work in Moscow, we practically overcome this problem. Moreover, we have achieved a lot in terms of access of women with disabilities to quality medical services in the field of gynecology and obstetrics. We work closely with the Department of Health, the Department of Labor and Social Protection of the Population of Moscow and the Committee of Public Relations of the city of Moscow. In pilot mode, the first and only family planning and reproduction center in Russia for women with disabilities is already operating on the basis of the Central Pedagogical Service on Sevastopolsky Prospekt. There, a woman with a disability after giving birth can be in a specially equipped ward.
Moscow is the only region in Russia where there are several benefits for parents with disabilities. This is not only our merit, but our organization also contributed to this. The first and most important benefit is the admission of children to the garden without a queue. There is a manual for single mothers with disabilities and a manual for families in which both parents are people with disabilities.
We are moving forward, but there are still problems, especially related to architectural accessibility. For example, my husband left a permanent job, so that we had the opportunity to take and bring children to school, kindergarten and additional classes. Moscow is a very specific city, because there are many historical buildings and not everything can be adapted. But the latest achievements of science and technology are trying to take into account the needs of people with limited mobility.
I am from the city of Lensk in Yakutia. After school I studied and lived in Novosibirsk. After the second year, I went to my parents for the summer, got into an accident on the way, and as a result, I broke the cervical vertebra. That was thirteen years ago. At that time in Russia, the spinal cord injury was like a verdict: people were just prepared to survive in a wheelchair. I visited a bunch of rehabilitation centers throughout Russia, even lived for half a year in China. Then I discovered the city of Saki in the Crimea, known as the “city of the disabled”. For six months I lived there and met people with different stories: there were wheelchair users, people with amputation of limbs, and people with cerebral palsy - everyone comes there. Only after I lived there, I realized that it is not necessary to walk in order to live.
I have long dreamed of pregnancy. I am a vulnerable person and I take everything to heart: after an unsuccessful experience in the district clinic, I assumed that I would encounter stereotypes in the antenatal clinic, so I immediately went to a private clinic. But the gynecologist was greatly insured: she sent me to a dermatologist and a neuropathologist for inquiries that I could bear and give birth to this child. This really surprised me. I changed a specialist on the advice of a friend, also a mom-wheelchairwoman. Later, no references related to disability were demanded of me.
In the eighth month I got to the hospital by ambulance, as I was bleeding. I was expecting incomprehensible questions or inadequate attitude, but I didn’t face it even once. I gave birth in the regional maternity hospital, everything was perfect there too. They talked to me very well. The only thing - none of the maternity hospitals are not adapted for wheelchairs. In the prenatal there was a small toilet, where a pregnant woman can go only sideways. In the regional maternity hospital there were no specialized wards or toilets either. And if it was still possible to get to the toilet somehow, then there is no shower in the shower.
Thanks to the advice of other mom wheelchairs, it was easier for me to arrange life. For example, I was prompted to buy a stroller that lowers low. I can safely put a baby in it and roll it with one hand. I have everything available and equipped at home, so we are quite easy with the baby. I moved to the electric carriage: I hold the child with one hand, I control the console with the other. On the advice of a friend, I was made a special large changing table, to which I can easily drive up. And everything else is the same as other parents.
I can not say that Novosibirsk is an affordable city. But he is committed to this. Our public organization "Center for Independent Living Finist" closely cooperates with the mayor's office and does a great job of integrating people with disabilities. But it’s still sad to see during our exit campaigns that half of the ramps are not made by standards, but just for show. It is impossible to enter such ramps.
First of all, I would like to change the mass perception that a person in a wheelchair should stay at home. This stereotype remained from Soviet times, when the problem was hushed up. I want to convey to people that people with disabilities are also solvent. They build families, work, drive a car and can come to your cafe or shop. You can allocate money and amend the law, but it will not work if the person does not understand why he is building a ramp in his shop.