Wheelchair Journey

I started using a wheelchair last year. It’s been an emotional roller coaster. It was like my worst nightmare come true, because my biggest fear was to not be able to walk again and ending up in a wheelchair for life. But, I have to use a wheelchair to avoid my condition becoming worse. I started to google about wheelchairs and how to stay active whilst using one. And thought it wouldn’t be the end of the world if I have to use a wheelchair. I still can walk a little but my left ankle gets swollen and becomes very sore. I have three torn ligaments on my left ankle and the doctor suggested surgery, but he wasn’t sure if the surgery would fix it and whether it would cause me more problems. I didn’t want to risk it and opted for a wheelchair.

I didn’t know anything about wheelchairs so I started to ask around to try to find information about them. Most wheelchair users that I asked were similar to me, also knowing nothing about a wheelchairs in general. I also found that many people who are still able to walk a little bit, like me, discovered that after they’d started using a wheelchair  they couldn’t  walk again at all because their muscle become weaker and weaker until eventually they lost their ability to walk. On my search, I also found that most people with a disability in Indonesia are not active and remain housebound. This is quite sad.

After I began using a wheelchair the biggest problem that I found is that most places are not wheelchair accessible. Most sidewalks and buildings in Indonesia aren’t wheelchair accessible. No wonder most people with disability remained housebound.

I promised myself I would stay active even though using a wheelchair. So, I had this crazy idea of wheeling a wheelchair from Yogyakarta to Jakarta. The first time I came out with this idea everyone around me thought I was crazy and kept telling me to forget about it because it would be quite dangerous and it seemed impossible.  On my previous motorcycle journey, when I was in Aceh, I heard about this guy who cycled a rickshaw from Aceh to Jakarta. His name is Scott Thompson. I googled about him and it turned out he had done amazing stuff like he ran across the Sahara and ran from Bali to Jakarta for a charity. I always wanted to link my journey to charity but I didn’t know how .So, I contacted him because he has done it so many times.  To my surprise, he replied to me. I wasn’t expecting he would reply me so fast because I knew he was a busy person and quite famous. We met up and I told him about my idea and he was the only person to support me at that time. Later on, he became my mentor and supported me mentally through the process and helped to fund the journey. Wisma Cheshire, a home for people with disabilities, also supported me during this journey.

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So I trained myself every day, with the wheelchair that I use normally, towards fulfilling my plan to do a 530 KM wheelchair journey. But, my wheelchairs weren’t suitable so I looked around for other one which would be. I found a company that claimed that they had done research for 8 years in developing countries and had suitable wheelchairs for Indonesia, and my planned trip. So I bought the wheelchair. It is a manual wheelchair with a lever drive train. I was so excited. But it turned out the wheelchair was not as good as I thought it was but the company isn’t responsible for it now because they are focusing on the American market only. It was very disappointing.

I was frustrated because my new wheelchair kept breaking down and giving me problems. Also, I needed to think about how to carry my luggage and parts. In the middle of my frustration I contacted my friend who later on introduced me to his bicycle community, called Bike Pe’a, in Jakarta. They become my savior and helped me to modify my wheelchair and also supported my journey.

The chair after some modifications

The chair after some modifications

The journey was a campaign and also some kind of protest to government.  I wanted to raise awareness about disability and accessibility.

I started from Yogyakarta city hall, I went about 5km when the wheelchair chain broke, so on the first day I only went 23 km(less than my target 30 km a day). I found out the next morning that my front wheel kept rubbing on the fork and that was why the wheelchair seemed so heavy. I slept at a petrol station and found out the next morning my tipping wheel were missing. So much for just one day on the road, but I kept on going. I didn’t have many technical problem after that, except for when my spokes broke twice on the roads, and because of the wheelchair’s funny mechanism and the freewheel were welded, so, every time I changed the spokes I needed to grind the freewheel. Most mechanic shops just cut my freewheel and replaced it with a new one. But, they also didn’t realize that you need to weld it carefully. Because the heat from the welder was melting the spring inside the freewheel. I went to a shop where they replaced my spokes and gave me a new freewheel, but when I thought everything okay and tested it over one kilometer, the wheelchair stopped working. I went back again to the shop. This is happened so many times until finally we found we needed to weld it carefully. By the time we found out it was late at night and all the shops were closed. It was a disaster, but tons of bicycle communities were helping me and I can’t thank them enough for their generosity.

Yogyakarta Monumen

Jawa Tengah Monumen

At Batiqa Hotel with cycling communtity

At Batiqa Hotel with cyclist from Cirebon

Sharing session about accessibility and disability with high school students

Sharing session about accessibility and disability with high school students

mixed communities gather to greeted me

mixed communities gather to greeted me

 Meotel Hotel Purwokerto hosted me a few nights while I'd waited for my chair to be fixed

Meotel Hotel Purwokerto hosted me a few nights while I’d waited for my chair to be fixed

The first three days on the road was completely me and my wheelchair. I was so scared most of the time because there were no sidewalks and I was wheeling my wheelchair on the roads along with cars, bikes, trucks and buses that seemed to be trying to kill me!. The funny thing is, I really enjoyed wheeling my wheelchair and chatting with all people that were impressed by my journey or just people that I passed by along the way. I was wheeling my wheelchair slowly so I had enough time to chat to all the people.  A lot of whom asked for my pictures, so, I had to stop for pictures every 5 minutes, but it was fun. I also had to stop a lot because so many people along the way were stopping me to give me foods and drink. It was crazy, thinking about it now I think I could have opened up a shop with all that foods and drinks that were given to me. I refused a lot of foods and drinks because I couldn’t carry that much food and drink with me. I needed to travel light.

On the road along with other vehicles

On the road along with other vehicles

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On the fourth day some community found me on the road and introduced me to their community. Without me knowing they shared my journey with other communities on my route. I lost my freedom right away. I kept explaining to the people that the journey was about independence and defying disability but some people from the community didn’t understand and treated me as if I was a charity object. They guarded me everywhere. They had been following me around even when I asked them so many times not to. I was annoyed because when they followed me around they were causing traffic jams and also they wanted to push me up every hill, even a little one. I really appreciated the help that I got along the way but this kind of thing makes my journey lose its meaning.  Many things that happened to me on my journey made me realized that in Indonesia people still think that a person with a disability is someone who is sick and always needing help and can’t be independent. Many times people have asked me why no one is helping me to push my wheelchair or why I am traveling alone. Indonesian people are extremely generous and kindhearted but this can also become a problem for people with a disability because we are kind of spoiled.

People with disability came to greeted me.

People with disability came to greeted me.

sharing session with community from Bagelan

sharing session with community from Bagelan

In public or government building access for those with a disability is mostly not provided, and everytime I ask people why there is no accessibility for people with disability they answered me with “well, we’re always here to help” but I tell them “What if you weren’t here”. Most people, thinking that there’s always someone willing to help, feel that they don’t need to build proper access for people with a disability.  And, because of this mind set, it makes people with a disability not able to be independent. I try my best to always educate people about disability and accessibility everywhere, because most people still don’t understand and are still thinking that we are sick when we are not. People haven’t seen disability as a diversity yet.

Discussed about accessibility for people with disability with a chief of police

Discussed about accessibility for people with disability with a chief of police

After few days I was getting good using my wheelchair on my journey. I started to do around 50 km a day and my highest record was 64 km. My plan was to finish my 530 km journey in 20 days, but I finished it on 15 days (18 days in total – 15 on the roads with 3 days rest and fixing my wheelchair). Along the way I stopped at government offices like mayor offices, police stations or other government building to explain more about disability and accessibility. I also stopped at people with disabilities centers and met so many people with disabilities and had discussions about the problem that we face in daily life, especially about accessibility.

Another girl with disability who were excited to see me

Another girl with disability who were excited to see me

At organizations for people with disability

At organizations for people with disability

Another organization for people with disability who drove miles away to see me

Another organization for people with disability who drove miles away to see me

Along the way a lot of people were thinking I was going to meet a president. It would have been nice if I could have met the President and have discussion about accessibility for people with disabilities, but unfortunately I didn’t get a chance to meet the President, but I finished at the Jakarta City Hall and met the Jakarta Mayor, Ahok. We didn’t got a chance to talk because at that time there were tons of people there waiting to see him too (All the Ahok supporters who were sad because Ahok wasn’t elected as Jakarta’s mayor).

Finally arrived in Jakarta

Finally arrived in Jakarta

Bike Pe'a came to celebrated the end of my journey

Bike Pe’a came to celebrated the end of my journey

Finally met the Governor of Jakarta, Mr. Ahok.

Finally met the Governor of Jakarta, Mr. Ahok.

This wheelchair journey was my first wheelchair journey but I am pretty sure it won’t be my last. I really want to do it again and educate people  and raise awareness about people with disability.