'Lives worth living' documentary poster. - Courtesy Photo

“There’s a belief that if you had a disability, you didn’t have a desire to live a life; you didn’t have the goals and dreams that somebody non-disabled has,”goes a dialogue in American epic documentary on disabled’s rights ‘Lives Worth Living’.

“That used to be a widespread belief and still many people have misunderstanding about the potential and power of the people with disabilities,” says Eric Neudel, the award winning director of the move.

Mr Neudel and movie producer Alison Gilkey were in Lahore this week to visit a centre for the rehabilitation of disabled people, run by Milestone, a non-profit organisation.

Mr Neudel and movie producer Alison Gilkey were in Lahore this week to visit a centre for the rehabilitation of disabled people. - Photo by author

They happily talked about the movie, and issues of physically and intellectually challenged people of the US and Pakistan.

They call the people with disabilities the largest minority in the world.

“There are one billion people with disabilities in the world, of them 59 million live in the US,” Mr Neudel explains with figures.

“And we heard that in Pakistan they are 27 million. It makes sense.” A country with almost 190 million people is sure to have that much physically-challenged people. No exaggeration.

The documentary, released in 2011, is the oral history of Disability Rights Movement, told by its mythical heroes.

“Alice and I met Fred Fray who had been in wheelchair since 1961,” said Mr Neudel about how he got into the movie. Fray suffered a spinal cord injury at the age of 17 and lost the ability to walk. But he refused to be just a spectator at life’s sidelines. He inspired other disabled and fought for equal rights and opportunity for them.

“He was an unusual man, a great man, an unsung hero and Disabilities Right Movement was his life’s work.”

As Fray shared his stories with them, Mr Neudel and Ms Gilkey visualised them as movie makers and decided to fit in those stories in a documentary. They had experience in movie making but had no finances.

“We had no money, so I used credit cards to buy the latest camera,” says Mr Neudel.

But it’s not only camera that makes the movie. They needed lots of money for the crew, for logistics, for production and for marketing.

Alice will tell you how we started off, says Mr Neudel.

“I was certain that we were doing the right things, making the right thing,” she said.

“It was the history completely missing from the public consciousness in the United States as people with disability is the largest minorities in the US and the world. We eventually got funding from the PBS.”

But getting funding was a task. It took them two years.

“We got prepared proposals and got turned down one after another, and the exercise continued for two years. We had invested so much in this story, that we had no other choice but to go ahead.”

Thanks to the Disability Rights Movement, millions of disabled Americans got legislation in 1990 granting them equal rights like anyone else. The law brought about visible changes in their lives.

But the legislation did not completely diminish the stigma the disabled carry around, said Mr Neudel, and “we tried to break that stigma through the documentary.”

Did it break the stigma?

“Oh, yes, yes. After the documentary, several dozens of schools initiated programmes on disabled rights.”

Ms Gilkey intervenes: “Right now, it’s society’s attitude towards people with disability is a main issue in the US. The passage of Americans Disability Act in 1990 and some previous acts required that all disabled have access to those things which non-disabled have such as education, and other civic and civil amentias.”

But the main issue still creeping in people’s mind was the fear of disability, she went on. There were misunderstandings that what a disabled person was capable of doing.

Mr Neudel said they learned here that in Pakistan, the glaring issue the disabled were facing was of lack of employment. He said there was only one law related to the disabled in Pakistan that mandated the government with providing a two percent of jobs to the disabled.

Recent protests by visually challenged people in Lahore speak itself about the enforcement of the law.

American does not a rosy picture of employment for disabled.

In America, he says, people with disabilities have high rate of unemployment. They want to work and want to contribute to society. The lucky who have a job have demonstrated their skills that they are great workers. They are at work on time, they get fewer sick leaves.

Instead of jobs, the disabled are shown pity at public places.

Shafiqur Rehman, disabled rights activist and wheelchair-ridden since his birth, abhors pity by non-disabled. He says he pities those who try to exhibit their piety through showing unnecessary kindness towards them.

Shafiqur Rehman, disabled right activist. - Photo by author

Ms Gilkey says they are trying to move away from the culture of pity towards disabled.

Mr Neudel adds, “In fact there has been a slogan ‘no pity’. The disabled say it is a nasty thing; we disown pity, American disabled show angry attitude towards pity.”

He says it all shows they do not want to be looked down, they want opportunities, and not to pitied. In all, they don’t want to be seen different.

And what about marriages?

Mr Neudel says there are active marriages between people disabled communities. They have met people who are married with disabled all the time.

Ms Gilkey says there are also equal numbers of disabled who are not in partnership but the trend is dwindling.

Mr Shafiqur Rehman says he has seen successful marriages of disabled people but still people have fears about entering in wedlock with physically challenged people.

“That fear can be reduced or addressed through mainstreaming the disabled,” says Ms Gilkey. “In America, disabled get education in general schools and that is the best way to teach people that they are not different."

Ms Gilkey and Mr Neudel have met lots of disabled and non-disabled in Pakistan.

“(I) love it, (I) love Pakistan, (I) love the people of Pakistan, especially this gentleman from the Lahore US consulate who is touring us in Lahore,” says Ms Gilkey.

To Mr Neudel, Pakistan is an amazing and great country. He says Pakistan’s culture is very sophisticated; people are very kind. Everybody has been so welcoming here, says Ms Gilkey.

But back home in the US, their family and friends keep on warning them to “be careful, be safe”.

“And everybody on Facebook, I get wishes that ‘be careful, be safe, and come home alive" says Ms Gilkey. Mr Neudel says he would recommend other Americans to visit Pakistan and see how beautiful it is.

Does the world have unfounded fears about disabled and Pakistan?

Oh, yes, people have unjustified fears about the disabled and about Pakistan, but I would love to come to Pakistan and even may settle here, says Mr Neudel.

Ms Gilkey laughs.