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Independent Living News & Policy from the National Council on Independent Living

U.S. Independent Living Delegation Visits Kathmandu!

By Julie Espinoza, NCIL Region 6 Representative and U.S. Delegate to Kathmandu

Through NCIL I was identified as a U.S. Delegate to go to Kathmandu and share the U.S.’s IL Movement. I never saw such an opportunity coming and I jumped on it and took a chance. So, there I was, headed to Kathmandu to really experience life as a person with a disability in a different culture and environment. I knew that I was going to learn so much and come back with a new perspective that would of course tie into my work. That was a naive understatement. I came back with a new spirit towards my life’s purpose.

It was surreal. So surreal I still can’t take it all in.

I’m so thankful for the Japanese Independent Living Movement (JIL), for Disabled Peoples’ International (DPI), for Masami Morigami (coordinator of whatever you need), and all my new friends in Japan and in Kathmandu.

First Stop: Japan

The Japanese IL Movement support CILs all over the world. I had no idea. They are planning on taking over the world and are leading the Global Independent Living Movement. It is an awesome plan and it’s rolling forward with quite a bit of speed.

We chatted in the taxi on our way to a hotel for a one night layover in Japan. I told Masami that I have stories about Justin Dart that I use when I talk about the U.S. IL movement – but that I’m too nervous to tell them overseas because I just might run into one of his 80 adopted kids from various countries – especially Japan! She laughed and gleefully told me that she IS one of those adopted kids! Someone should interview her for a book. She is an invaluable resource. Once we got to the hotel, I met my U.S. Delegate partner – Sheri Burns, Executive Director of the Silicon Valley CIL and NCIL Region 9 Representative. Sheri was a huge asset on this mission. She has a mind that never stops working and needs very little sleep! We had a late dinner with Satoshi Sato – Secretary General of DPI (Disabled Peoples’ International – Japan). Dinner in Japan was everything I had hoped and imagined – artistic, Japanese-ish, delicious, and lots of small servings, which allows one to try EVERYTHING. Satoshi really knew how to order. I will always appreciate that wonderful experience!

Japan was way ahead of the U.S. on accessibility in airport restrooms and ecological designs in every detail. I was very impressed with their detailed thought and ingenuity in design for access, beauty, and ecology! This is also true of the airport in South Korea. Every bathroom showcased a new accessible design!

Next Stop: Kathmandu

Nepalese Delegation of 23 people hold American and Japanese and Neopalese flags and a banner that reads Heartly Welcome our Deligates from Japan and USA - Together we can do moreYou haven’t seen anything if you haven’t traveled to Kathmandu. What a city, and what an outstanding CIL! The entire staff and some Board members and consumers greeted us at the airport. They presented us with gifts and led us to our hotel for the night with a large motorcycle escort. The CIL makes lightweight wheelchairs that easily fit under the motorcycles’ steering column and they installed steps over the back wheel to transfer on and off. The taxis there are small and they have racks on top, so the driver just ties your wheelchair on. Sheri and I thought Uber might want to see how this is done.

Logistics in Kathmandu: There is no reliable electricity, no sidewalks, no wide streets, and no road repair, and no physical accessibility. There is earthquake rubble blockage, over population, dangerous water, and no traffic rules that Americans are accustomed to. I was told not to bring an electric wheelchair – it won’t work in Kathmandu (my old manual wheelchair barely managed). 

Krishna Gautam – Secretary General of Kathmandu CIL & World Leader: 10 years ago, Krishna started the first CIL in Kathmandu. Today CILs in Nepal, the world’s poorest developed country, operate largely without Government support. Krishna has succeeded where not many others would have in overcoming outrageous obstacles. In the short time I was there (12 days), I noticed that he was a master in leadership, hospitality, detailed thought, and also tireless energy!

View of Kathmandu - a bustling city with multi-colord buildings and mountains in the distanceI traveled with my husband as my attendant. Kathmandu is not normal “Attendant” territory. In the U.S., an attendant is almost the same as a caregiver. In Kathmandu, an attendant is almost the same as a people mover. Due to the lack of funds, ancient architecture, and no space for adding on, access is impossible. The ADA could not be possible. You either stay in your room, which many do, or you have a people mover help you get around. The people that stay in their room often die young due to diseases and can’t even get to medical treatment. No lift-equipped buses, no parking spaces, no ramps, no wide doors. And electricity is an occasional event – so really, no elevators. Krishna had thought through how I was going to get to experience Kathmandu with all these problems. My first hour in the hotel, I was told to hurry upstairs because the electricity was going to be off for many hours. It wasn’t a joke. Within 24 hours I had been carried up and down 3 flights of steps so I could get to breakfast. I was introduced to a man named AJ, whom I was told by Krishna was there to help me get around. I declined because I had my husband. Little did I know what was involved! I needed more than 1 attendant and people larger than me might need 2-4 people movers! As an attendant, AJ had studied every spot of ground for how I was to be wheeled around without pain and jarring. It was a monumental task that he amazingly succeeded at. Steps in Kathmandu are not your average American size. They are the size of a low bench! Wheeling around was backwards, skyward, and lifted through the air. I felt like a couch on moving day into a third floor apartment. Only moving day is every day, all day. Without AJ and my husband, I would never have seen anything.

Getting around Kathmandu is unlike getting around anywhere else. Is seems impossible even for able-bodied people. AJ taught me that trust and confidence are not qualities in Kathmandu – they are skills. Without those two things, you can’t function. He also taught me not to shriek every time the taxi driver pulled out onto oncoming traffic with pedestrians walking everywhere on the street without looking. Trust and confidence.

Six people pose for a group photo - including Masami, AJ, Julie, Sato, and their photographer. Many are flexing their biceps. The city of Kathmandu is visible in the background.Sightseeing: Kathmandu is a place to behold, with exquisite architectural design from centuries ago, temples, palaces, mountains, and unbelievable views. Everything is old. The sounds of India, China, and Thailand all melded together. Nepal is bordered by so many countries. The history is rich. You can see it. You can never escape that you are in Kathmandu. Nothing ever looks like the U.S. It involves all your senses at all times – sound, smell, sight. The customs are so respectful. I was carried up to the top of the famous “Monkey Temple,” saw the “Living Goddess” in person and the “King”! I was extremely lucky. But, I have to say that my favorite experience in tourism couldn’t have been better chosen if I had planned it for months by myself. First was a historically accurate Royal Feast. Complete with beautiful table settings made centuries ago and used by Royalty, so intricate in design, with traditional Kathmandu foods and drinks. The table was breathtaking, with each and every course served and presented as the dishes where changed and the settings arranged. We dined with the CIL staff, guests, Board of Directors, and consumers. The place was a “mud house,” original in detail to how the wealthy lived long, long ago. It was beautifully painted inside with colors and art. It had many open windows (windows are open in Kathmandu at all times). We were then entertained with musicians and dancers, all traditional. People in Kathmandu love to enjoy festivities! They do it right!

Now, down to business. The IL Movements in Japan and Nepal are the beginnings of the Global IL Movement. It is something for each and every U.S. Advocate to experience. The game is changing, and it’s bigger and better than anything IL Founders could ever have dreamed of.

I want to try my best to convey to you what is going on with CILs, people, and big business plans. It affects you. This is not isolated stuff. Our jobs at CILs are never going to be the way they have been. The world is catching up, fast. What I saw in Kathmandu made my jaw drop. As presentations were made by the CIL in Kathmandu and by the Japanese IL Movement, I had so many emotions: shock, awe, happiness, camaraderie, humility, anger, and embarrassment. OUR U.S. IL Movement has been replicated to perfection. OUR recipe for the IL philosophy has been successfully duplicated and – get this – improved.

So how can a barely funded CIL, non-ADA accessible city, out-do us at our own game? I met so many people with disabilities facing our exact same issues (and then some), with our exact same philosophy and goals. They were hosting meeting after meeting with community leaders and business owners. They pulled together as a team of volunteers, paid staff and town folks, to help achieve even minor changes. Folks, I’m talking about staff and consumers who often don’t even have accessible bathrooms or homes. They are knocking on America’s door for help and collaboration, and the world’s. And they are getting a response.

I love my new friends over there. They have passion. They are fighting for their rights. They have PURPOSE. It isn’t just keen intelligence and community organizing skills. It is necessity and capitalizing on new ways of being able to do things. This trip made it abundantly clear that we are second generation IL Movement, and they are first generation IL Movement overseas. We have paid jobs, organizations, grants, leaders, and experience. They have our recipe, our history to learn from, and new passions and leaders. They have new, innovative ways to make a global network possible – something our founders didn’t have. They are discovering strengths, and we are on a routine. They are struggling and getting strong. We are – well. Spoiled? Entitled? A little on automatic pilot? They focus on unity and strength in numbers. We focus on reports and issues.

As a member of CILs, ADAPT, AAPD, CTD, NCIL etc., I would highly resent someone telling me I don’t have passion and purpose and that I am spoiled. But there is no comparison. I think it is inevitable. It’s like a family that goes from rags to riches with a successful family business, scratching their heads at how come their grown children aren’t as committed to the business as some of the new employees that just started. What we, U.S. leaders, have today is a new chapter. Without this new chapter, we might end up with a memory of the IL Movement leaders in the 1970s and a large network of social service CILs. We need this new chapter to open up the mission again to new pioneers in a global movement. We need this as badly as they need us. They need our numbers of people, power, funding, and political clout. We need this avenue for our second generation troops to make new contributions and work out some muscle. If we do not open up this avenue, I’m afraid our most enthusiastic will leave. Social media works both ways.

Summary

I went to Kathmandu to share our IL Movement with them. I went to get acquainted with the Japan IL Movement and their world work. I went there to learn. I also wanted to eat as much food as I could try. I came back with respect for the wonderful CIL comrades I have. I have a new sisterhood of women with disabilities ready to organize on our issues globally. I have a new exciting opportunity to stop teaching IL history and make some IL History! I think my time period is going to be even more exciting than Ed Roberts’ and Justin Dart’s. It feels so bold to even say that, but I see it happening and I’m jumping in with both feet. For those of you reading this who are shouting “Yes!” in your head – I look forward to working with you. Let the good times roll, my co- activists! Call me and we’ll make plans to take over the world, IL style.

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