My name is Anjana K.C. I am from Pokhara, Nepal. I have Osteogenesis Imperfecta. My elder sister also had the same illness. She passed away when she was 14. I attended a regular school. Every day my mother carried me on her back to school, and then took me back home. But with so many obstacles and barriers on campus, once reaching the classroom I was never able to leave there between 10 in the morning and 5 in the evening. I could not even go to the toilet, so I avoided any drink and had very little food. During my university days I did not even go to the classroom and studied in my dormitory, and just took the final examination. After graduating, I established an organization called Society for Independent Living in Pokhara and began to work on a number of activities together with my peers. In 2012, I was granted an opportunity to train in Japan, which had always been my dream since my childhood. Then I had many new experiences in Japan during the training, and learned many important things.

Before coming to Japan I did not understand a word in Japanese. For the first three months after arriving in Japan, I had to work very hard in order to become able to speak Japanese. All the teachers were very experienced and kind, so the study was enjoyable. I made numerous errors whenever I attempted speaking in Japanese, but this did not stop me from trying. My Japanese gradually got better and better, and I could eventually speak the language.

In the New Year I went to the city of Nishinomiya for the home-stay program. It was such an enjoyable experience as my host father and mother were very kind people. With my host family, I visited many Shinto shrines and enjoyed playing Nepali games. Knowing that I loved pot stews, the mother cooked me a Kimchi hot pot. On the morning of my departure, the father stunned me by singing me a Nepali song, which was very difficult to sing. I had so many wonderful experiences during the home-stay program. I know that even after I return to Nepal, I will always have my family in Japan.

My individual training started at the Tekuteku, where I slowly but surely learned a large number of things. I also visited many institutions, schools and hospitals. Moreover, I listened to the personal histories of Ms. Hakiai and Mr. Iwasaki. The best thing at the Tekuteku was that I could consult with people who were older than I – indeed, whenever anything troubled me during my stay in Japan I sought advice from to Ms. Hakiai and Mr. Iwasaki. I also experienced a training program that involved a personal assistant. However, at that time I had no idea about what personal assistants were supposed to do or how I could ask them to do something. And, as I thought I could do everything by myself, I just made coffee with my personal assistant and chatted with her.

The sea around Okinawa is very beautiful, and the weather was much like that of Nepal. After sampling sushi in Okinawa I grew very fond of the food.

The wonderful thing about the Iruka is that the young and the old work together well. This way, younger people can learn from older people, and tips and knowledge given by old people are reflected in the activities of young people. Ms. Reiko Nagai gave me an important piece of advice – she said, “In your country, you have to raise your own voice because it has no national system to support people with disabilities. Raise your voice, so that you can support people with disabilities and help them be able to study. This is the most important thing, to raise your voice.”

I visited many institutions and hospitals during my training in Kagoshima and Okinawa. These places looked very convenient, but I felt as if they were a “convenience cage”. For example, there were all kinds of food and equipment that people might want within these buildings, but they did not have freedom to access these items when they wanted to. Neither had they freedom to go outside. I heard that people staying in these buildings were allowed to go outside for a couple of times a year, but other than that it was the same life day after day. I felt that life in Nepal and the life at these institutions in Japan were somewhat similar.

Independent Living ‘MUCHU’ Center is much like home to me, and is also a place I love most. As Emi was like an elder sister to me and Mr. Hirashita was like a father to me, I was able to do a lot of interesting, fun things that I had always wanted to do. For example I gave a comedy performance, and also participated in a barbecue evening. It was great fun training at the ‘MUCHU’ Center.

At the ‘MUCHU’, I also listened to other people’s personal history. When I was in Nepal, I considered myself a very bad person. I used to hate my disability and I wanted to have friends without disabilities. Whenever I could not do something I wanted to do, I thought it was my own fault and was angry with myself. However, after listening to everyone else’s personal history at the ‘MUCHU’, I understood that everyone had started out the same. Anyone with a disability feels the same towards themselves, and we are different only by the places we live. The most powerful of all was Lala-san’s personal history. After listening to her story I felt stronger. I also learned that it was important to change the way I feel, in order to love myself.

In Nepal, I was afraid to learn about my own disability. However in Japan, I gradually came to think that it was better for myself to understand my disability, so I met up with a doctor who was an expert of Osteogenesis Imperfecta. The doctor told me that my physical condition would gradually deteriorate. At the same time, since I came to Japan I have seen many people with disabilities which were far more severe than mine, enjoying life to the fullest by using the services available. They told me many stories as well. This made me think that I would like to live the same way as they were living, when my physical condition eventually worsened and I became less capable of doing things that I wished to. In order to create service systems, it is important to engage in a disability movement. So I made an oath to myself that I would work hard on a disability movement once I am back in Nepal.

After training at the ‘MUCHU’ center, I finally came to understand the importance of using a personal assistant, and of having enjoyable and interesting activities. If a personal assistant helps me in the areas I cannot manage well by myself due to my disability, I can set aside much room and time for activities that only I can do. Therefore it is very important to use a personal assistant. In addition, I need many peers in order to engage in activities and thereby to change society. Of course, there may be times when we feel down, because no one knows how long it will take to create welfare systems and services we aim for. This means that the activities have to be rewarding and interesting, not just for myself but also for my peers. If the activities are enjoyable, our minds will be engaged and strengthened, so working on the disability movement will not be tough. It is important to be in high, strong spirits. At the ‘MUCHU’, I was always in good spirits so I understand this even better. If there are many places like the ‘MUCHU’, no one will have to feel lonely, because everyone exists for everyone else.

As Japan is so convenient, I experienced many things for the first time in my life, including things that I thought would never be possible to do. I went everywhere by myself and participated in many sporting activities. I also dreamed about falling in love with someone and getting married. I thought, once my homeland became convenient as well, it would be possible for people with disabilities to dream about things and, make them come true. Or should I put it this way – with no change in the country, we will not even be confident to dream.

Before coming to Japan, I was a hard worker. I wanted to study hard because I wanted to work in the government, and I also wanted opportunities to travel abroad. But I came to understand that, no matter how hard I worked, unless the country changed and had sufficient services, it would remain impossible for me to do anything that I really wanted to do. Because of this, I began to love independent living movements even more. It gave me many dreams and strength to an amazing extent.

“We too…” is an activity I would like to start once I am back in Nepal. This phrase means a variety of things: “We too want to do many things; we want to study, go outside, get on the bus, and go shopping, because we too are humans and we too have human rights.” In Japan I learned a lot about disabilities and services and systems for people with disabilities. Using this knowledge, I will work hard to create similar systems in Nepal. Work needs peers. I would like to pay attention to my peers’ problems and feelings, and consult with them to see what kind of services are best for our country. I would also like to give a thought to what kind of activities would be interesting and fun for everyone.

I would like to create a barrier-free society in Nepal. I would also like a personal assistant service, so that people with disabilities can all live independently, fall in love, get married, have their own family and live happily. I will not give up and work hard, to live freely and happily in our society. We don’t need sympathy – we need empathy.

I would like to express my heartfelt thanks to everyone at all of the organizations I contacted for teaching me so many things in the last ten months. Thank you, to the staff members of the JSRPD, including my role model, Ms. Masako Okuhira. Lastly, my thanks go to everyone at the Duskin AINOWA Foundation, for having granted me such a wonderful opportunity. Thank you very much.