When disability rights pioneer Judy Heumann died in March at age 75, I was on a cruise ship near Australia and heard the news on the BBC World Service.
In life, and in death, Judy was a world figure. As a co-founder of the Berkeley-based World Institute on Disability and one of the architects of the Americans with Disabilities Act, she touched the lives of millions of people, including mine.
Judy was among a handful of disabled activists who had literally gotten me where I was at that moment, sailing the Tasman Sea between Australia and New Zealand. Thanks to such activists, I was able to roll my wheelchair out the door of my San Francisco home, cross intersections with curb cuts, ride an accessible BART train to SFO, fly to Singapore and board the Queen Mary 2 for a monthlong cruise.
Our ship was largely barrier-free. The wheelchair-friendly cabins on our English ocean liner were called ADA rooms. The Americans with Disabilities Act is among the finest U.S. exports — and Judy was among its principal exporters.
Judy contracted polio in infancy. By age 5, she was deemed a fire hazard by her Brooklyn school and was barred from kindergarten because of her disability. Her parents, German Jewish refugees from the Holocaust, had a question for local educators: Who is the world built for?
Years later, Judy asked the same question in a landmark lawsuit against New York City’s Board of Education — and became the state’s first public school teacher who used a wheelchair.
I called out Judy’s name at Kaddish during Friday services in a Queen Mary 2 conference room, but something felt incomplete.
A question was nagging at me: Who was this cruise built for?
Our ship was accessible, but our entire voyage wasn’t. At each port, hundreds of passengers streamed down gangways to join sightseeing tours, but many others were left behind because the cruise company had not arranged coaches with wheelchair lifts. A bus driver waiting at the Thai port of Laem Chabang, for example, assured me that there were plenty of such coaches available. The cruise company just hadn’t requested them.
I did ask myself if this was just a “first world problem” — or something more essential. My wife and I had arranged for accessible vans for our own port excursions. But I met several British passengers who used wheelchairs but were of more modest means and did not have the same option.
The Americans with Disabilities Act is among the finest U.S. exports — and Judy Heumann was among its principal exporters.
Each port was different. In Darwin, Australia, for instance, the wheelchair ride from dock to downtown was well marked with elevators and level paths. The journey took about 15 minutes, and the city buses were wheelchair accessible. But I only learned all this after we had arrived and Brian, a hearty paraplegic from the north of England, had scouted out the situation.
Port briefings held on the eve of each arrival never mentioned accessibility — precious information for disabled travelers. Brian and his wife, Chris, pointed out this problem to the purser’s office.
I could have pointed out the obvious too: the nightly display of passengers heading to the ship’s dining room with canes, wheelchairs, crutches, walkers and scooters. In the splashy advertisements for our cruise, everyone was middle-aged, vital, vibrant and free from infirmity. This disconnect spoke to something deeper about the cruise company and its culture.
It was Brian who told me about our stop at Bali. I had transportation arranged at the port. But Brian informed me that disabled passengers couldn’t get off the ship there because Bali was not a deep-water port. The ship would anchor, and only passengers who could step into bobbing tender boats could shuttle ashore. Somehow, our cruise itinerary hadn’t mentioned this.
I emailed Bali Access Travel to cancel the plans I had arranged for a tour of the island in a wheelchair-accessible van.
Feeling angry about Bali, I headed to the ship’s tour office to resolve another issue at a different upcoming port. There, I asked why we’d been told that wheelchair users couldn’t tour Brisbane, Australia. Accessible coaches were hard to find, an employee told me. I promised to find him all the lift-equipped coaches that Brisbane had to offer. It would only take an email or two.
I smiled. He frowned. Come back in a few hours, he said.
The tour office hastily arranged and quickly filled an accessible coach tour of Brisbane. In the meantime, Brian and Chris had been talking to the purser. Thanks to their efforts, the next port briefing — the one for Brisbane — included accessibility details, including the free wheelchair-friendly shuttle into town.
Visiting Washington, D.C., last year, I had lunch with Judy. We had worked together in the 1970s at Berkeley’s Center for Independent Living, one of the nation’s first, and most powerful, advocacy groups for people with disabilities. I wanted to show Judy gratitude for her work, her leadership and her existence.
Over falafel at a neighborhood deli, when I asked about retirement, Judy shook her head. She planned to keep working. Judy had been an official with the Clinton and Obama administrations, an adviser to the World Bank and a host of other things. But she was still on a mission.
After the cruise, I still had a small mission myself. Our voyage wasn’t as inclusive as I expected and wasn’t designed to include people with disabilities. I decided that I would email and keep emailing the cruise company about the issues I encountered until I got a real commitment from them to change. I would follow in Judy’s steps — well, her wheelchair tire tracks — and not give up.
Jews famously ask questions. Judy Heumann’s questions expanded disability rights. We need to keep asking those questions. Even the finest democratic institutions — like the Americans with Disabilities Act — have the beauty and permanence of sandcastles. They are built slowly, erode easily and require constant renewal.