people walking and in wheelchairs outside theater in rain
The festival’s participants arriving on a cold, rainy morning.

Lives Worth Living filmmakers Eric Neudel and Alison Gilkey recently returned from presenting their film in Moscow at Breaking Down Barriers, an international disability film festival. The festival is a celebration of diversity, showcasing films from across the globe that promote a positive message about disability. We sat down with Gilkey to learn more about their trip and the state of civil rights for the Russian Federation’s disabled population — especially in light of U.S. Senate Republicans voting down the U.N. disabilities treaty last week.

(An encore presentation of Lives Worth Living will air on Independent Lens on Monday, December 17 at 10 PM. Check local listings.)

That’s a big trip! How were you received, coming from the U.S. with this film?
From the moment we were met off the plane in Moscow to the time we said goodbye six days later, it was obvious that everyone participating was excited to learn, to teach, to connect with one another. The breadth of diversity in one place was staggering. The movie theater in the center of Moscow that hosted the festival was a continuously changing landscape of humanity. It truly was a “come one, come all” environment.

What’s the state of disability rights/laws in Russia? How does it compare with the U.S.?
The Russian Federation is many decades behind the United States in its recognition of civil rights for the disabled population. State institutions are still seen as the answer to caring for a person with a disability. Children with a disability cannot attend school if they need accommodations. They must be home schooled, which the state pays for, but which keeps them completely isolated and invisible to their peers. Organizations like Perspektiva (founder of the film festival) headed by the indomitable Denise Roza, are working hard every day against seemingly insurmountable odds to change this.

If someone who uses a wheelchair has to get around the city center of Moscow and in and out of buildings and rooms within, is this pretty simple? Somewhat difficult? Downright impossible?
Eric and I learned first hand how completely inaccessible the city is. We arrived at the airport and boarded the AirTrain that would take us to the subway system that serves the city of Moscow. The spanking brand-new airport and the AirTrain is the epitomy of efficiency and accessibility, but once you leave that new system it is all but impossible to move about if you have a mobility issue.

white archways with people in moscow subway station
The beautiful – and completely inaccessible – Moscow subway system

We had to travel for an hour on the subway system to reach our hotel. The subway is so efficient but so completely inaccessible. No elevators anywhere, miles of corridors, enormous flights of stairs, and sometimes if we were lucky, escalators that seemed to go on for ever. We both had heavy suitcases and by the time we reached the hotel our hips and legs were completely disjointed from lugging for what seemed like miles. And we don’t (yet!) have mobility issues. There are no curb cuts in the streets. None.

How about beyond the city center? If someone is in one of the less-visited, poorer areas, what’s access like?
Our hotel was on the northern outskirts of the city. The hotel itself did a great job of accommodating their visitors with disabilities, but once you leave the hotel environment there is no accessibility — period.

How do people there feel about this?
People across the world want change. They want equality. A person with a disability, wherever they are in the world, has the same rights to everything that a non-disabled person has access to.

How do you feel about this?
As a mother of two sons with disabilities I am so thankful that I live in a country where civil rights are honored.

Alison Gilkey in Red Square. Getting around Moscow was almost impossible with rolling luggage, she says. Imagine what it’s like for someone who needs a wheelchair.

What do you think about Senate Republicans blocking U.S. ratification of the U.N. Convention on the Rights of Persons With Disabilities (CRPD) last week? I mean, how hard is it to ratify a U.N. treaty that is based on the Americans with Disabilities Act — a law that already exists in the U.S.?
The undeniably partisan Senate vote against the treaty is a startling blow to the international disability community. The CRPD aims to ensure access, economic independence, and civil and human rights protections for the disabled community, and is largely modeled after the Americans with Disabilities Act.  The United States is seen as a world leader in human and civil rights, so this vote was very confusing to the outside world.  Even countries with dismal human rights records such as China and Afghanistan have ratified the Convention!

What are the implications of this vote on the global scale?
The 126 countries that have ratified the Convention are now held to an international legal standard to protect people with disabilities.  The fact that the US did not ratify sends a negative signal to the world that it doesn’t stand behind international disability rights. With over 1 billion people with disabilities globally, that’s a large population to snub.

Did Russia ratify the treaty? If so, what does that mean in terms of what this changes (or doesn’t) there?
The Russian Federation ratified the CRPD in 2012, so it is now legally held to a worldwide standard of protection and advancement of civil and human rights for the disabled. There is an enormous amount of work that needs to be accomplished before the 13 million people with disabilities in Russia start to see things change; Infrastructure can’t be changed overnight, neither can attitudes and long held discriminatory beliefs. Having said that, just the fact that the Russian Federation did ratify means that things have to start happening, however slowly.

Is there hope in the near future for improvement?
There is always hope. There are so many people working for change in Russia that change will come. It won’t be easy, but those who understand human rights will not give up.

kremlin glowing orange at sunset
Although Russia is dramatically behind the U.S. in terms of disability rights, Gilkey sees hope for better days ahead.

Did you hear from others who desperately want the kind of access and civil rights people the disabled have in the United States?
Every country has different levels of acceptability and on the other hand of discrimination — even the U.S. Historically the disabled are the most disenfranchised, impoverished minority — and the largest minority. Of course the Russian organizations like Perspektiva, coming from so far behind, use the American disability civil-rights fight as a model. We had a Danish filmmaker who screened her film about the deaf culture in Denmark (she has two deaf sons) ask us about using Lives Worth Living as a wake-up call to her Parliament. It’s not about one particular disability, it is universal ability and access.

Despite this recent Senate vote on the U.N. treaty, is the U.S. a great example, or do we have a long way to go?
America really is a leader in disability civil rights. A person with a disability in a third-world country doesn’t stand a chance of equal rights at this time. They are tossed aside, hidden, families are made to feel ashamed. Change is a’coming, though. It is inevitable.

Do you think the screening of your film inspired people?
The screening of Lives Worth Living had a packed audience at the theater and we were fortunate to have the film shown on the opening day of the festival. Although maybe some of the humor did not translate, the concepts in the film are international. Anyone of any nationality could understand the fight: the need for activists, advocates, and politicians to come together to effect lasting, legal change.

What has been the reaction in general since your film first aired? Has there been any resulting improvement or change? Simply awareness?
The response to the film over the last year has been incredible. Eric and I have been to many screenings and participated in many discussions. The one thing we hear over and over from people or organizations devoted to disability rights is “we never knew.” They never knew their own history, they never knew how proud they should be of the collective struggle for equal rights. Education is the path to enlightenment. That is the legacy of this film.

Photos courtesy of Alison Gilkey