You can email, call, or visit your elected officials. Of all the advocacy methods, the gold standard is the in-person office visit—the most direct and personal form of communication.
Unfortunately, for wheelchair users, the journey for an in-person visit is long, barely accessible, and stressful. Homecare worker schedules, travel costs, and physical strain add to the difficulty. As a result, wheelchair users don’t have frequent opportunities to make legislative visits to Albany. And because of this, the process to create policies that directly impact the disability community often excludes them. This fact helped create the often repeated battle cry of the disability community: Nothing about us without us.
What follows is a travel diary from one such trip to Albany for three members of the Civics League for Disability Rights (CLDR).
The Journey Begins
The alarm clock goes off at 3:00 AM for Civics League for Disability Rights (CLDR) advocates Esteban Santos and Nancy Leandro, allowing them to prepare for their 8:35 AM train from Penn Station to Albany, New York. They book early Access–A–Ride (AAR) reservations to avoid missing the Amtrak train. As everyone in the disability community knows, AAR can be unreliable, so extra time is not only smart—it is imperative.
Today, they are lucky. At 4:00 AM, traffic is light, and they arrive at Penn Station two hours early.
Across town, Christy Cruz-Cullins cares for her 9-year-old daughter before taking an E-Hail taxi to meet them. The group gathers at 7:45 AM, well aware that boarding an accessible train is a slow process.
Boarding the Train
Several wheelchairs users are traveling today, so Amtrak staff, though friendly and helpful, struggle to manage the influx. Only one bridge plate (a portable ramp) is available, forcing passengers to wait.
Once on board, wheelchair users face another obstacle: an immediate 90-degree turn into a narrow doorway flanked by metal walls. Maneuvering power chairs requires multiple adjustments. One of our travel companions has leg contractures, making the turn even harder. The doorway’s automatic sliding door doesn’t lock in place, which is just another barrier to entering the train without injury or breaking your wheelchair.
Phew! Finally, on board, the group finds themselves separated, as each train car accommodates only two wheelchair users. So much for a planned strategy session.
The accessible car’s restroom is, ironically, inaccessible. Nancy and Esteban decide not to eat or drink for the three-hour journey to avoid needing it.
Arriving in Albany
After a beautiful ride along the majestic Hudson River, the train pulls into Albany–Rensselaer station. To reach the Capitol, the advocates must take a bus or a taxi. They book rides through Flex, a newly launched accessible transport service. However, it can accommodate only one wheelchair user per trip, requiring three separate rides. (While inefficient for a group of wheelchair users, Flex did allow on-demand service. Sadly, it was discontinued at the end of March.)
At the legislative office building, the accessible route is a long, narrow, winding sidewalk to the accessible entrance. Security screenings require removing coats and bags, which is a tedious and difficult hurdle for our advocates. Seven hours after leaving home, Nancy and Esteban have taken three modes of public transportation, and have yet to see a single elected official.
Navigating the Capitol
Albany is crowded with large groups in matching t-shirts prepared to advocate for pressing issues in their communities, school kids on field trips, and legislators whisking quickly between meetings. Though the government buildings are technically accessible, heavy foot traffic makes navigating them time-consuming. Wheelchair users compete for elevator space, often waiting several rounds before boarding.
The first meeting is promising: a knowledgeable staffer greets them, and they fit comfortably into a spacious conference room—an uncommon luxury. Most legislative offices are too small to accommodate multiple wheelchair users, leaving them stuck in the hall.
Throughout the day, they meet with staffers, long-time aides, and even high school interns. Some are well-informed; others take notes and promise to relay their concerns. They advocate for S1918 and an Assembly companion bill supporting the establishment of specialized health homes for people with disabilities.
One official is in a committee meeting, so they track him down in the Assembly chamber. The process resembles a celebrity meet-and-greet—advocates hand business cards to an attendant, who signals the legislator. Wheelchair access was definitely not considered in this set up, as the space is small and cramped. After a brief conversation, they rush to catch their return train home.
The Journey Home
Our advocates wait for their Flex bus on a very windy, cold street corner. When it arrives, the lift malfunctions. The driver calls for another bus. The arriving driver tries to fix the broken lift but cannot figure it out. Eventually, the second driver allows two wheelchair users to board—an unofficial but necessary workaround. There are two wheelchair securement locations on the bus, and luckily, Esteban can transfer to a seat so they are able to make it to the train on time.
At the train station, the accessible bathroom is out of order. Another long, uncomfortable train ride awaits.
Boarding in Albany is chaotic. Even more wheelchair users are traveling home, but Amtrak still has only one bridge plate, causing delays. At 7:30 PM, the exhausted group finally arrives at Penn Station.
E-Hail rides home are pre-arranged, yet drivers still seem surprised when wheelchair users are the passengers. Two of the drivers must first remove personal items stored on their vehicle ramps before the advocates can board.
Was it worth it?
Despite a grueling 16-hour day, all three advocates agree: showing up in person matters. Their voices were heard.
Will it be enough to push S1918 forward? Only time will tell.
Opinions expressed are solely those of the writer(s) and do not necessarily reflect the opinions of Able News at The Viscardi Center and/or The Viscardi Center.