Inspiration Abroad

In Search Of Independent Living

by Traci Walters

Last October, accompanied by my daughter, Candice, I travelled to the Sixth World Assembly of Disabled Peoples International held in Sapporo, Japan.

As a woman with a disability and the National Director of the Canadian Association of Independent Living Centres (CAILC), I had a personal and professional interest in attending the assembly. I was also excited at the prospect of meeting people with varying disabilities from different parts of the world, as they shared both the successes and challenges of living with a disability in their respective communities.

More than 2,500 people came together to discuss the challenges people with disabilities face on a daily basis. Independent Living was one of the major threads that ran throughout the conference.

I set off for Japan with a mission: to find out what Independent Living means to individuals with disabilities in other countries. From the minute the doors opened at the conference centre, energy, exuberance and excitement filled the huge complex. Throughout the course of three days, my daughter and I met with many individuals with disabilities. Here are some stories about what Independent Living means to them.

Mehesh Chandrasekar

Mehesh has used a wheelchair since 1987 as a result of a virus. For three years afterwards, Mehesh stayed in his home with his family, feeling that his life was worthless.

"In India, 95 per cent of disabled people are unemployed and live in extreme poverty,' explains Mehesh. "In my culture, the person who provides for his family has the status within that family, and those who are unable to provide are viewed as a burden and, as a result, receive fewer privileges.' Mehesh felt that he would never be able to work, marry or even move out on his own now that he had a disability.

But one day, there was a knock on the door. Family friend Prema came to take Mehesh for a ride on her bicycle. Premas sister has a disability and uses a wheelchair, so Prema had grown up with disabilities as a part of everyday life. She had always felt that all people were equal.

Prema persuaded Mehesh to leave the house, and for the first time in years, he saw beyond his immediate surroundings. Mehesh describes that day as "the most important day of my life.' This was not only the beginning of a love story between him and Prema, but also the first step towards Independent Living. Mehesh saw a new world of hopes and possibilities. He knew that he could make a better life for himself as long as he had the strength to believe in himself, so he moved forward, with a strong sense of conviction and determination.

Mehesh and Prema are now married and live in Bangalore, India. He is a program manager for Mobility India, an organization that works with people with mobility disabilities throughout India. The organization provides people in rural areas with low-cost appliances, aids and rehabilitation devices, along with the skills training to be able to keep making them. This is quite a task, as 80 per cent of people with disabilities in India live in remote areas, and, in the villages, only five per cent of Indias people with disabilities are employed.

When I ask Mehesh what Independent Living means to him now, he says nonchalantly, "IL means living like anyone else, nothing special. It means living your life the way you want it to be. Now I have nobody else deciding for me what I should or should not do. I am no longer branded as being disabled and useless. I am happy."

Abdul Khaliq Zazai

Zazai, now 28 years old, has lived in Pakistan since he was eight. As a child, Zazai was out playing in the street with his friends when he was shot in the leg in the crossfire of a skirmish between Afghani and Russian soldiers. He was transported to a hospital in Peshawar, Pakistan, for surgery. He eventually had several operations.

Zazai explained that in Pakistan, many individuals who cannot obtain a wheelchair find (if they can) a large piece of rubber and drag themselves on the ground to get around. Many people with disabilities beg for food in the streets and markets. People with disabilities in Afghanistan do get respect, however. Persons disabled as a result of war are seen as defenders of the nation and its people.

Growing up as a refugee in Pakistan left Zazai feeling like an outsider and a second-class citizen. For years he lived in squalor, without access to health care, employment or skills training. He had lost his entire family except for a sister, and now had to adapt to life alone with a disability.

Zazai was determined to make a difference in his own life and in the lives of other Afghan refugees. He eventually found some work with a humanitarian program that also provided him with access to computers and the Internet. He soon learned about and got accepted into the Duskin Leadership Training program, which accepts 10 people annually from Asian Pacific countries for skills development training in Japan, after which they return to their home countries to apply these new skills. Along with Japanese, Zazai is busy learning about technology, business and how to make assistive devices.

Even though he has had to leave his wife and three children behind in Pakistan and misses them tremendously, he knows that this program will enable him to one day help the hundreds of thousands of refugees who want to return to Afghanistan to rebuild their lives. Independent Living to Zazai means being able to access the tools and training needed to make his life rich and productive so that, in turn, he can reach out and help others.

Kimiyo Sato

Kimiyo Sato is a founding member of the Sapporo Independent Living Centre in Japan. In 1990, she was the first person in Japan using a ventilator to leave an institution and move out into the community. Up until that time, she had spent 27 years of her life in an institution.

Kimiyo was determined to prove to the medical establishment that persons using a ventilator have the right to access the services they need to live in the community if that is what they want to do.

Living outside of an institution was quite an experience for Kimiyo. She had only imagined what it would be like to live with privacy and independence. She had heard that, in other countries, people using ventilators to breathe were living successfully in the community. But she also knew that there were many barriers to overcome, particularly the lack of attendant services.

Medical professionals at that time rarely made efforts to try to come up with workable solutions to enable Kimiyo and others to live more independently and on their own terms. Kimiyo points out that the media also provided little support. "They portrayed ventilator users as brain-dead and incapable of making decisions. This message left the general public thinking along the same lines, so I was facing an uphill battle.' For some of Kimiyos friends, the phrase "going home' meant dying, not living in a home of ones own. "I have the right to run risks, make mistakes, regardless of the outcome,' she adds.

Kimiyo now enjoys meeting with other individuals using ventilators who also live in the community. She admits that she never dreamed of getting this far. Independent Living for Kimiyo means being able to make choices - quite simply, doing what one wants in spite of having a disability. Kimiyo is a woman who loves life and wants to share that passion with everyone. She is a strong leader for the Independent Living movement and disability rights in Japan.

Independent Living internationally is unique, just like the individuals who embrace it and live it. However, the outcome is universal. Independent Living allows us all to share a vision that enables people with disabilities to participate in meaningful ways in society.

My trip to Japan taught me that Independent Living has an international following, and Canada is viewed as a leader. But here in Canada we also have many untold stories of people with disabilities who are currently facing barriers, have unmet disability needs and live in poverty.

All governments need to embrace Independent Living in order to enable full citizenship, and Canada needs to demonstrate concrete measures to build the capacity of our own disability community. We need to move beyond band-aid measures to real, tangible and meaningful investment in building and maintaining the capacity of Independent Living Centres.

Until we do this, our own Independent Living movement is at risk.

October 2002

(Traci Walters is the former National Director of the Canadian Association of Independent Living Centres, now Independent Living Canada . Contributions to this article were made by Candice Botha, a student at Algonquin College in Ottawa. Their journey to Japan was made possible by the Teall Foundation, Ottawa, and Disabled Persons International. A condensed version of this article was printed in Disability International, a publication of Disabled Peoples International(DPI), which promotes the human rights of disabled persons, fostering economical and social integration.)