By Mendee Jargalsaikhan
Our guest was Mrs. Chuluundolgor – President of the Mongolian National Wheelchair Users’ Association and we did not realize that our recording lasted way over an hour. She faced similar challenges to our first guest Battulga. Because of a tragic car accident, she lost her mobility at the age of sixteen – shocked and depressed, she thought she was the only one in a wheelchair in Uvurkhangai aimag.
Professional counselling to help her deal with the mental hardship was not available. Chuluundolgor was inspired by two strong beautiful ladies – Enkhtuya sister, as she called, and renowned circus actress Tsogtsetseg – both wheelchair users with a beautiful smile. That was the first time Chuluundolgor saw that people can be happy even when they are in a wheelchair. She studied economy and hoped to get a job at the bank. But all banks declined her application. Just like Battulga, at that time, she realized that she needs to fight for her rights and joined the Mongolian National Wheelchair Users’ Association. It was touching to hear how the association conducted their earlier meetings at the National Park, near the Marshall Bridge, and in front of the Drama Theatre since there was no place that could accommodate a large number of wheelchair users. Our podcast covers many important issues, here are a few highlights.
A Fight for Motherhood
Her road to motherhood was not an easy one. In Mongolia, doctors, social workers, and parents often advise women with disabilities against pregnancy – which is the most important natural right. They discourage pregnancy for two common reasons: (1) anticipation of medical emergency and difficulties at any stage of the pregnancy and (2) likelihood of genetical inheritance of the disability in the offspring. The former is understandable, the latter is not a scientifically proven fact. Our guest fought against this culture. It was not easy to get her medical tests and check-ups at the hospital. Doctors were surprised at her and there were neither adjustable examination beds, nor accessible washrooms, or any special weighing scales. Her husband carried her in his hands between floors at the five-story hospital in the absence of lifts or escalators. At the end of this endeavor, she delivered a healthy baby boy without any major medical complications. She happily stated that most hospitals and maternity homes are now equipped with adjustable beds, scales, accessible washrooms, and lifts. Unlike in 2013, now doctors and nurses are knowledgeable about the pregnancy of disabled women. However, this change applies to the major city only.
The Reproductive Rights of Women with Disabilities
In the countryside, things are worse. Health professionals and social workers strongly discourage the pregnancy and even carry out campaigns for contraceptive injections. There was an incident in which social workers tied the receiving of social welfare pension to the three-month contraceptive injections as a requirement. Parents can usually be divided into two categories: those who discourage the pregnancy because of health challenges, and those who encourage the pregnancy in order to have a child help her in the future. This raises a question – why these people are making their children’s lifetime choices on behalf of them and whether people with disabilities know about their rights. Chuluundolgor explains that the prevalent culture, or practice, in Mongolia is to increase the dependency of disabled people on their families and close ones. Since disabled people heavily rely on them, they surrender all their rights to them and are patronised. Some even do not know whether they receive social welfare pension or not. And she highlighted the lack of knowledge dissemination in Mongolia. According to their association’s study, many disabled people have no understanding about sexual and reproductive health – especially those with hearing or vision impairments and mental disabilities – basically do not have access to general knowledge. Unless their family members, social workers, and health professionals provide them with this knowledge systematically, they actually rely on rumours. One of their surveys revealed that a third of disabled female participants believes AIDS is non-transmittable. The more isolated from the urban centers they are, the less aware they are about their own rights.
Labour – One Needs to Follow Up
Our discussion led us to the topic of employment. Only 10 percent of disabled people (70,000) with working capacity are employed. Politicians and government officials publicize the new amendments in the Mongolian Labour Law – which requires any business entity or organization that has more than 50 employees, to employ disabled people at a level of 3% of its total employees. In case of failure to employ people with disabilities, business entities are required to pay a penalty tax, which would be used to create employment opportunities for the disabled. At the same time, the law requires a lengthy, unnecessary documentation process for any organization to win a tender to fund the employment of disabled people. As a result of the presidential decree (#128) to enforce the Labour Law, 8.3 billion Tugrik have been collected – of which 60 per cent was spent on promoting employment of PWD and other people but no one knows where the rest of the money is now. This law and the fund need to be used to address some key challenges. For any disabled person, it is quite difficult to adjust to new working conditions, especially when their pay cannot even cover the transportation costs since taking a taxi is the only option. There should be an induction process – a slow start, mix of online and office work, a break for every 2 hours – for disabled employees. The above-mentioned fund could be used to create a training program for managers and staff of business entities and/or to create a barrier-free work environment and inclusive culture. Also, the fund could be used to resolve the transportation issues for disabled employees. For anyone, who would have to spend all their earnings on transportation costs and was not properly coached about the new work culture and environment, it would be hard to get out of their comfort zone – even if it is terrible and isolating.
Why Let Disabled People Be in Charge
At several times during our conversation, Chuluundolgor highlighted the crucial importance for government officials at the national and local level to listen to civil society experts – as they are working for people with disabilities. She wondered if someone in rural Bayan-Ulgii aimag knows about the government’s fine employment program for disabled people. Or, whether the governor has spoken to local non-governmental organizations. This raises a particularly important question – why people with disabilities are not in charge of their own matters in the national and local government. She implied more disabled people should work at the General Authority for Development of Persons with Disabilities. This is a very valid point. For example, women would be uncomfortable if men were in charge of any type of women’s organization. If the parliament, prime minister, and president hired disabled experts as their advisors, or ministries provided positions for disabled people, it would be a major step forward to change the public perceptions of disabled employees. The same applies to local governments – provinces and soum level. Mayors of big cities could have people with disabilities as employees, or, in an advisory capacity. After only having listened to three guests, it was strikingly clear that ordinary people do not understand the challenges of disabled people – unless they have some personal or professional experience. All our guests sounded somewhat unhappy about the negligence of government officials – whether it be about drafting the policy at the parliament and ministries or implementing policies on the ground. They wished: if only these experts had known or experienced the needs and wishes of people with disabilities, if they had been in an inclusive learning environment (kindergarten, schools), or if they had listened to people with disabilities.
Impacts of COVID-19
They are immense, she sighed deeply. She cannot even think about the many disabled people who live on their own during this pandemic. According to their poll (200 correspondents) during the pandemic, 79% have no income and 61% could not get meal coupons. Particularly those, who live in dormitories during the frigid cold days of winter, could not reach out to the social workers of their primary (permanent) residency. Those who live in ger districts could not get their coal and water. She could not even begin to describe how the strict lockdown impacted disabled people – many of their relatives or friends could not come and help. And those who rely on their cars (adjusted/improvised old cars for disabled people) could not drive around to get their food and medicine. She shared two stories. A disabled person had a fever and called the medical emergency and told them he needed a cleaning of his bandages. The medics asked to check and report his temperature every three hours because it could be Covid-19. So, the person asked a befriended doctor. The doctor cleaned the abscess and saved his life. If someone had not cleaned the abscess, he could have died – as the doctor said. In another case, a disabled mother called the doctor because her baby appeared to be sick. The doctor was afraid of contracting Covid-19 and asked her to call the emergency. But the disabled mom did not want to call the emergency – if she did, she would be quarantined with a baby. The big question here is if the State Emergency Commission has a plan for those with disabilities, with special medical needs, and for those in need of a care person. Or who would take care if someone’s caregiver is infected and isolated? How would the disabled person receive their regular and scheduled medical care, as well as take their medication? These and many other questions she raised – but we could not find any specific regulations and rules set out. If the state fails to provide, what about the volunteer organizations?
How to Treat People with Disabilities
Never focus on the person’s disability – she strongly advised. Treat a person with any disability like a normal person. Ask them questions about their opinions, for example, during these covid days, talk about vaccines: which one is good and why they think that way. You would be surprised how shrewd, how witty people with disabilities are because they spend more time to critically ponder about life and values. If you have a child with a disability, do not make their choices for them on food, clothes, outings, and so forth. You may think you know very well about your child’s need. But if you do not ask for their opinion, you are not respecting your child’s right dignity and right to self-determination. They need to learn how to make choices, and this will give them responsibility. If your child wants to eat soup, ask him/her to take part in the process of preparation, even if it’s only peeling potatoes. Here, Chuluundolgor shared her personal story. At work, her colleagues challenge her all the time. But when she meets her close friends and relatives in her native place (Uvurkhangai), they all focus on her disability. Even though they all want to take care of her in good will, such an attitude quickly triggers her very feeling of sadness and being different than others. After Chuluundolgor said that people with disabilities should be invited to join any community work – even cleaning the streets, it took us a while to grasp her point – they would feel happy being included in the social context. And we need to try our best to let them forget about their sufferings and vulnerability even if it is just for a short time.
At the end of our talk, Chuluundolgor shared her dream – a safe, accessible road for her son and people with disabilities. His son is in the second grade. Before the pandemic, she waited for him every day in her car since she cannot go around the school ground in her wheelchair. She hopes her son would get a high-quality education and grow up in a safe, healthy environment. Because of the low traffic safety standard, it would be hard for her to let her son go alone to the school. But he would eventually walk alone.
She told us that people with wheelchairs feel freedom when they travel to developed countries because they can get around without assistance. But the moment they step out at the Chinggis Khaan Airport, they realize their dependency. Only 8,000 out of 30,000 disabled people live in apartments and she could not imagine how those living in the ger districts try to move their wheelchairs on muddy, rocky, and zigzagged streets. The state needs to invest in making roads and transportations accessible, barrier free – thus changing the lives of many disabled people – it could even help them to become self-reliant taxpayers. Yes, these accessible streets would be also shared by parents with baby carts, toddlers, elders, or other with walking aids, and sick/tired people. Throughout the podcast, our guest keeps highlighting the positive changes – buildings have better accessibility, and most importantly, attitudes are changing. Let us end on this positive note.
The Untold podcast and blog post are made available by the generous support of the Friedrich Ebert Foundation in Mongolia. We also want to thank our editor Riya Tikku.