Table 2. Representative quotes.

Poor access to the physical environment

Q1. “I live on the fifth floor and I cannot get home alone. It is a five-story old apartment with no lift or ramp. It is hard for me to get out and come back in. My wife has to ask someone to help me. I need two persons to help me to go up and down the stairs with my wheelchair. I would like to live in an apartment with lift and standard ramp. Nowadays, new apartments have lift, it is not a problem. However, there is no ramp in most of them.” (P1)

Q2. “I rarely go shopping with my husband or mom. Maybe two times a year [laughed] to big malls like Grand Plaza, which have ramps and lifts. If they are busy, then I cannot go. […] Of course, I do like to go shopping. I like to choose clothes for myself, but everything is so limited for people like me to go out. I only go to certain places such as the State Department Store and Max Mall because these stores have ramps and lifts.” (P4)

Q3. “There are only few supermarkets that have a ramp. Maybe around three or four. That is quite difficult situation for me. In many cases, I could not buy what I wanted to due to the limited options in the accessible shops. Also, when I go to barber I cannot get in. There are only two barbers that have a ramp, and they change their location all the time. I just would like to be able to go to any barbershop that is open. I am not satisfied with this situation. There is no bank with a ramp in this province. Therefore, I cannot get bank services.” (P13)

Q4. “There is a standard for ramps in Mongolia. There can only be 12 cm of elevation over 1 m. However, companies do not follow the standard. First, we need principles of liability. Because people and/or companies do not know the standard very well, so they make the ramps with sharp and steep slope. Some of them claim that they cannot make changes to follow the standard because it is a rental accommodation. That is why, we need strict policies and principles. In fact, Mongolian government makes requirement on companies to build their apartments according to the standard. There should be a specialist to monitor and check whether companies are following the standard requirements. Sometimes, the companies prefer to pay the penalty because it is small amount of money.” (P10)

Q5. “For example, our school had many stairs and thresholds. We removed thresholds inside home, but when we go outside the threshold is a pretty big problem for us. You know, we have a culture related to the threshold in Mongolia. For example, when you enter a yurt [Mongolian traditional tent], do not step or sit on the threshold. Mongolian people like to have thresholds inside buildings or home, consequently thresholds are everywhere.” (P2)

Q6. “I cannot enter the restroom at home with my wheelchair. It is very small which is typical for old Russian style apartments. I always need someone’s help when I need to go to toilet. Sometimes, I use a portable toilet if there is no someone at home.” (P5)

Q7. “We have a common bathtub. Bathtubs of old apartments are high and deep, but our bathtub’s height is 10–15 cm. While sitting on a wheelchair, I manage to put my legs into the bathtub, then my wife supports me and I put my lower body on the edge of the bathtub, and thereafter again my wife supports me to smoothly get into the bathtub. When I finish washing my body, my wife comes in and does the exact same thing but in reversal sequence to get me out of the bathtub. True, it is impossible to have shower or take a bath all by myself.” (P1)

Q8. “I did not go to the toilet since I got trauma. Because, I cannot go. It is impossible to use the toilets in countryside. You know the toilet in the countryside? Wooden and deep, I might fall down into it [laughed]. I always do it at home. My husband always helps me.” (P9)

Q9. “We do not have a modern bathroom. It is pretty difficult to take a bath in the countryside. My father brings in water from outside. My mother usually arranges everything for me to take a bath. She prepares warm water and washes all my body on a bed. Generally, I can wash my upper body. Sometimes, we use a portable bathtub to take a bath. So, my parents just hold me from both sides and put me in the bathtub.” (P10)

Q10. “Most sidewalks around apartments are not designed and constructed for persons with disabilities. There are lot of borders and thresholds everywhere, so it is much easier for me to use the traffic road. I saw some places started to have curb ramps, but it is not everywhere.” (P1)

Q11. “Most roads where I live are dirt roads. I mean, we do not have paved roads or sidewalks in rural areas. It is very difficult to get around in a wheelchair because of stones and others obstacles in dirt roads. The only paved road is in front of the local government building in our province. When I cross a road, I can use only railroad crossings. You see, there are many obstacles whenever we go. Our environment is not accessible for us at all, which means, there is no chance to move around.” (P10)

Q12. “Well, in summer time, it is much better. I can wait for one or two hours, until someone comes and helps me to get home. But, in winter it is much harder. People with SCI get cold very quickly. When it is –20°C outside, there is a risk getting sick or start freezing. That is why, many wheelchair users do not go outside in winter time. I stay inside from November to March. In Mongolia, it is –30°C and snowing a lot. The road is very slippery during the winter.” (P3)

Q13. “I still think about continuing my study [thinking …]. My situation right now is dependent on my mom. If I wanted to continue my study in college, there will be issues on who will pick me up or drop me off at college etc. Even if my classmates could help me in getting a cab every day, the most difficult thing will be going to the restroom. So, because of these issues I cannot continue my study in college.” (P4)

Q14. “I would not say I tried hard enough to look for a job. I think there are limitations everywhere starting from ramps at entrances to non-availability of restrooms specially designed and equipped for persons with disabilities. I do realize that it is quite difficult for people like me to stay for long time in workplaces. I think these are main difficulties to get a job.” (P3)

Q15. “I used to play basketball almost every day. I gave up my sport after the injury. It is impossible to do this. If I wanted to play, I need to go out there. So, someone needs to help me to get there. The only hobby now is reading and surfing the internet.” (P11)

Absence of wheelchair-friendly transportation

Q16. “Long buses with ramps were imported recently for us. But, those buses go within few lines only. Also, our bus drivers do not stop closer to the curb, so it is hard for us to get in. They never use the ramps. In fact, the government pays five billion tugriks to bus companies to let persons with disabilities take a bus for free. But, we cannot take the bus.” (P7)

Q17. “There are no accessible buses for persons with disabilities in rural areas. Two years ago, microbuses started to serve in the province center. But, not so many passengers with disabilities use the microbuses, which are very small, so I cannot get in. Once I used the microbus to go to the capital city for my treatment. My mom was traveling with me. I could not sit in the first year, so we had to rent the whole microbus to transfer me in horizontal position. Later, when I started to sit, we did not rent the whole microbus, but I needed two seats. We spent a lot of money on transportation. It is approximately 1600 km and it takes almost 24 h to get to the capital city.” (P15)

Q18. “It is very difficult. I am heavy with my wheelchair and the wheelchair does not fit in the train’s narrow hallway. It is completely impossible to move on a wheelchair inside the train. Once, I traveled to China to have a spinal surgery. People had to put me on a mattress and haul me. There is no chance of me moving by myself. So, I just stayed inside my cabin during the whole travel. There was no way to get to the toilet. I had to go inside my cabin.” (P5)

Q19. “There are no platforms. Actually, the government has made some changes, but they did not do it according to the standard again. The government supported to equip recently one coach in one train to access for wheelchair users. But, there is only one coach for many persons with disabilities. Moreover, the equipped train goes in only one direction. Our government really should solve this problem for us.” (P14)

Q20. “It is better if you install hand control in your car. But, we do not have that kind of service. Only one guy from my work made a fabricated car for me. It is not made according to standards and it is illegal. But, there is no other way. Police do not have any concept about it. I think they are not aware that this kind of car even exists. […] It is dangerous.” (P7)

Q21. “I drove a car without a license for almost two years. Even, if I wanted to take driving courses they do not have that kind of service and the vehicle for us. […] The law says that if a person is not considered as a healthy person, they are not allowed to take driving courses. I visited many hospitals to get legal paper saying that I am healthy, only I am a person with disability. But, doctors are afraid that if anything happens, police will take legal actions against them. I also visited many driving courses, asking to get a driving license. But they do not allow. My friend and I used to go out of the city and he taught me how to drive. Eventually, I learned how to drive illegally without official driving courses.” (P15)

Q22. “[The] non-governmental organization offered me a job. I needed to go between the province center and soum [village] where I live. At the beginning, I used taxi for one and half year. I spent a lot of money. It was 10’000 tugrik [∼ 4 USD] a day. Also, my parents could not move to live in the province center because they are herders. I could not live alone, even now. Then, I just gave up. […] No. no buses or other public transportation between the province center and soum.” (P9)

Negative societal attitudes

Q23. “I have a girlfriend now. The problem is that her parents, relatives and friends do not like me because I am a person with disability. My girlfriend told me that they all constantly persuade her to finish our relationship. They think I am infertile. I really get anxious and stressed about myself because of this.” (P11)

Q24. “I am an economist. I take care of my family’s financial needs by running my own publishing service company. Even though I want to work as an economist, Mongolian companies do not hire me.” (P13)

Q25. “I think Mongolian society does not understand and accept persons with disabilities. Mongolians are very superstitious. So, they think people who make lots of sins get to become disabled or something like that. I have communicated with a lot of people, most of them think this way. So, because of our society attitudes, I do not go out much.” (P16)

Q26. “I think our society looks at us as sick people who can do nothing. They think that persons with disabilities have no intellectual potential, I could feel and sense it. People stare a lot. Some people look at us like we are poor or they pity us. One day in a supermarket, when I laughed some people said ‘Poor her, she is laughing’. I do not like to go out because I do not want to have this kind of bad feelings. Then, I get really depressed.” (P8)

Inadequate healthcare and rehabilitation services

Q27. “Well, let’s say from similar persons with SCI. They helped me to learn these things. When I was in a hospital, I met one guy on a wheelchair. Since then, I have got a communication with persons living with SCI. I get information from the Independent Living Center. My life has changed completely since meeting with my friends living with SCI at this center. Doctors have not provided me with much information. After the accident, doctors saved my life. After that my parents took care of me. Then, I needed consultation on how to live in future. Youths with SCI taught me a lot.” (P14)

Q28. “Mongolian doctors at the clinics do not have any concepts about persons with SCI. They told me that I could not give birth. They wanted me to have an abortion. My mom did not approve the abortion. Also, I wanted to keep my baby. I did not visit any clinics again until my expected delivery date. I found one acquaintance of my mom and lobbied the doctor. Then, I had caesarean section birth. I knew few persons with disabilities who gave birth. So, I believed that I also could do it.” (P4)

Q29. “I do not think it is possible for me to conceive naturally. I have not got diagnosed yet. I still think about it. There are persons with SCI who have had kids through artificial insemination. But, they do not share the information. I think few private hospitals in Mongolia do that service. But, it is a rare thing in our country.” (P13)

Q30. “The government tries to take loans to build nursing homes for us. In fact, we do not need them, we need proper rehabilitative care. The Rehabilitation Centre is newly re-established. They do only treatments like massage and vitamins. That is all. They try to heal spinal cord injury by massage or acupuncture. They do not understand that these treatments do not have any effects. I spent so much money and time on useless treatments. From the beginning, doctors should have explained everything. I even went to see pastors and visited temples or churches with the aim to stand on my feet.” (P11)

Q31. “We get pressure ulcers and doctors do not know how to treat it. It is so pitiful that so many persons with SCI could not survive the pressure ulcer and die. After I got injured, the trauma hospital’s doctors said to my wife that patients with SCI live for maximum ten years due to pressure ulcers with a proper care. But, it is now past 15 years since I got injured. I am still alive and I guess I will live for some more years [smiled]. Actually, they cannot treat pressure ulcers in Mongolia.” (P6)

Q32. “In this province, there are no doctors who are specialized in kidney and bladder. If you use a catheter in a wrong way, you could get bladder infection. Once I had a problem with a catheter, doctors could not change it either, and I had to travel to the capital city to get specialized doctor’s service. Since then, I learned how to change my catheter on my own.” (P13)

Q33. “In my opinion, health services are not really good in Mongolia. Most of persons with SCI need to go abroad for treatments. […] I am very sensitive about one thing. Our doctors are not good on providing with information for us. They do not give any advice on how persons with SCI should live their life. I went to Japan, once I paid 100 USD for 30 min session with a doctor.” (P7)

Q34. “[…] I have heard that a Chinese doctor came to Mongolia. So, I visited that doctor to get some consultation. The doctor said to me that I did not get proper treatment. Then, I decided to go to China to get treatment. When I stayed there in a hospital, the treatment for pressure ulcers was much better than in Mongolia. My relatives helped me in terms of money. We collected some money for this purpose.” (P1)

Lack of access to assistive devices and medicines

Q35. “It is difficult to find a good quality wheelchair [smiled]. The reporter Z used to import second-hand wheelchairs from USA. He imported two and distributed to persons with disabilities. Fortunately, I was one of the two lucky persons to get the wheelchair. It was free. Thereafter, lots of wheelchairs were imported to Mongolia, but most of them were from China and with very bad quality. I am still using the one I was given for free after choosing from several wheelchairs. It is manual. I guess, most of the wheelchairs here in Mongolia are manual. Even, if I find the automatic one, I am afraid that there is no specialist to maintain and repair. Also, the automatic wheelchairs are heavy. So, it would be even more difficult to move around, especially if there is a need to hold me while getting up and down. Also, mostly Mongolian market imports wheelchairs for clinical practice. In fact, we need a wheelchair in daily living.” (P1)

Q36. “In Mongolia, technologies are poorly developed. For example, I saw this chair on the internet in which you can sit and transfer to a bathtub without slipping. There are many types of equipment for persons with disabilities, right? But, Mongolian market does not sell those kinds of products. Few stores sell appliances for persons with disabilities, but they cost too much. So, we are unable to buy them.” (P7)

Q37. “There is a special pole stick on my bed to ease a movement around the bed, also to support for sitting or lying on the bed. I use a very old style metal bed from Russia that enabled to equip with that pole stick. My old bed is comfortable enough to move around using that pole stick.” (P1)

Q38. “The law says that the welfare service should give away wheelchairs worth 150’000 tugriks [∼61USD]. For that matter, the welfare companies buy wheelchair worth in that amount, which are usually very bad quality wheelchairs. If the government spent more money, the welfare companies would be able to import better quality wheelchairs. The welfare companies could import expensive wheelchairs, but in that case we ought to pay the difference. […] The government announces tender and the company that wins the tender becomes responsible for the social welfare activities. I am not happy about those wheelchairs either. People with any shapes and size might use a wheelchair. When the wheelchair does not fit your size, it becomes another difficulty for us, for instance back pain.” (P13)

Q39. “The social welfare office provides support once in three years for special devices. There is a list of equipment that social welfare gives away for free […]. We get wheelchairs, crutches, chairs, watches, also sphygmomanometers. Most of the equipment in the list are very not useful for us. I really need transfer devices.” (P16)

Q40. “It is difficult to sit on a wheelchair every single day. I have had pressure ulcers several times before, but now I am preventing it with a cushion. French doctors used to come twice a year. They gave me this cushion for free. So, I cannot find this cushion in Mongolia. I have to have it repaired and there is one guy who can repair my cushion.” (P11)

Q41. “The social welfare office provides about 20 types of the devices for persons with disabilities. Unfortunately, preventive cushions are not included. We really need such special utilities to prevent. If the government wants to support us, then provide the most useful and important devices or tools.” (P14)

Q42. “My brother sent me a special ointment from Sweden. After using that ointment for three days, my skin started to recover. That was a really good ointment. We need that kind of medicines. Unfortunately, we cannot find them in Mongolia. Mongolian doctors suggested one ointment. I used it a lot, unfortunately that ointment could not treat my pressure ulcer.” (P4)

Q43. “After a while, taking morphine did not really work and I started to take tramadol. But, I got allergy from it on my skin and later I started to see hallucinations.” (P9)

Q44. “Every day I need to take 100 mg morphin and 150 mg pregabalin. These are drugs with pretty high dose. It is very difficult to find them. I always order them from Korea. Even though these drugs are very expensive for me to afford, I really need to take them. If I do not take my drugs, I suffer from strong pain and cannot sleep. If I cannot order these strong ones, sometimes I take tebantin 300 mg. You can find tebantin here in Mongolia, but this does not work for me. When my drugs finishes, I have anxiety.” (P6)

Q45. “I use camel marrow to prevent pressure ulcers. I apply it on my skin in the areas where pressure ulcers usually develop. When you sit on a wheelchair for a long time, the area of your skin, where you might develop pressure ulcers, gets darkened. You massage those areas with camel marrow.” (P13)

Q46. “When the pain relief pills did not quite work in the hospital, the nurses used injections to make me asleep. They explained that I got pain shock due to the strong pain and if I refuse to get injections, maybe some vodka would help me to sleep. I drunk just 50 ml vodka and immediately fell asleep. Since then, I drink vodka when I need to sleep.” (P9)

Limited financial resources for healthcare

Q47. “I get quarterly allowance of 60’000 tugriks [∼25USD] for medicines. I also get allowance for medical devices that I need to use, which is provided once in three years. It depends on what medical devices I need. For example, I get money for catheter bags. So, I get 740’000 tugriks [∼302USD] once in three years. Other 64’000 tugriks [∼26USD] for care and 140’000 [∼57USD] for wood and coal once a year. The government supports for heating if a person lives in an apartment, or for wood and coal in a yurt [Mongolian traditional tent]. However, these monetary supports are insufficient for my life, but better than nothing.” (P4)

Q48. “Before, there were no supports on this allowance of the half-fare transportation expenses. The government has updated the social welfare policy for us recently. Now, it is stated that if a person with disability who lives in remote areas more than 1000 km from the capital city, you can get allowance for one way of the whole transportation expenses with the aim of accessing healthcare services. But, it is only once a year.” (P15)

Q49. “Well, state hospital service is free of charge for persons with disabilities. But, the state hospitals are always short of medicines and injections that I need. So, we have to get drugs and injections ourselves. Doctors say what they have and what they do not have, so we manage to get the necessary medicaments ourselves. Some medicines are very expensive and I cannot pay for it.” (P15)

Q50. “[…] it is quite a big financial burden for us to pay another half of the hospitalization expenses. Although my disability pension is higher compared to some others, I cannot afford the cost of sanatoriums. I guess the other people with lower pension must be in an even worse situation. Private hospitals cost a lot, even after discounts. Due to this reason, I cannot get proper treatments that I want.” (P6)

Inaccurate categorization of disabilities in laws

Q51. “As per Mongolia law, employers must employ one person with disability for every 25 ordinary people working in the workplace. However, I think it does not get implemented as it states. Unfortunately, persons with disabilities employed are the ones who have very light injuries such as missing one finger on hand or hearing disabilities. I do not think wheelchair users have been hired by any companies. The most problematic issue is ‘ability to work’. The law states three levels of the disability. If the disability is above 70% – it means ‘ability to work’ is completely lost. For example, I lost 90% of my ability to work. 50%–70% is partly lost. Below 50% person is stated to have the ability to work. This is wrong, because people think that a person with SCI has completely lost his abilities to work. Depending on the level of injuries, persons with disabilities can perform different tasks. So, the legal terminology should be corrected. In reality, most employers think that persons with disabilities cannot do any work, so they refuse to employ us. It should be changed according to the international standards or terminologies.” (P1)

Q52. “[…] the reason is that our country does not have a system of evaluating the level of injuries. There should be a category for serious and light injuries. So, we have such inefficient system, our government should revise financial regulations. For example, financial supports should be distributed according to the level of assistance required.” (P12)