Being a wheelchair user requires a lot of planning. Any travel demands that I plan ahead.
I can’t swallow so I need to make sure I always have plenty of spit rags. I use towels to manage my secretions. I tend to have days where I’m especially full of secretions, so I refer to myself as being juicy. One caregiver would lovingly call me juicy fruit.
Since I can’t swallow, I use a feeding tube that has been surgically attached to my stomach for all nutrition. I can’t take anything orally. In addition to spit towels, I must bring my food, water, feeding syringe and tube extension. I do a feed every four hours, so if I’m out all day, I need to take my feed stuff as appropriate.
I have extremely dry eyes that require constant eye drops. I always have to carry Refresh eye drops. They are not cheap, and when you live off disability payments, every cent matters. If I’m out for two hours, I know to bring 10 individual eye drop vials. One box of 70 vials cost $30.
I am unable to drive, so I rely on public transit, rideshare services and the generosity of friends and family. To make plans to go out, I must ensure I have transportation organized, and I must make sure that wherever I am going is accessible. Even though the Americans with Disabilities Act (ADA) was signed into law in 1990, most places are not accessible 34 years later.
I spend a lot of time at our state capitol lobbying for disability rights. Every time I visit “The People’s House,” I’m appalled by how inaccessible the building is.
The only accessible bathrooms are in the basement of the four-story building. The place is full of stairs, and access to the House and Senate floors requires using a wheelchair lift that must be operated by a Sargent of Arms who is stationed up a flight of stairs. There’s no way for a wheelchair user to independently access legislators. Add in the mobs of people who are competing for legislators, and it’s almost impossible for a wheelchair user to get any attention. Oh, and sessions are only active from 9 a.m. to noon January through May.
Coming and going
Most power chairs need wheelchair accessible vehicles to handle their weight. Power chairs typically weigh about 300 pounds. That’s why you see wheelchair buses operated by Access-A-Ride or Via.
The problem is there are never enough drivers or buses to cater to the number of wheelchair users. To reserve a ride, I must book a week or at least a day ahead. With Access-A-Ride, I must be at my appointment for at least an hour, and the location must be three quarters of a mile from a fixed bus route stop. All rides are given a 30-minute pickup and drop-off window. If I’m not ready to go within five minutes after your pick-up time, the driver will leave without me. Access-A-Ride will combine passenger trips, which often makes me late because of the other riders.
The whole process is very time consuming. For a 15-minute haircut, I have to set aside at least three hours of my day.
This is why I own two power chairs. One I call “Big Bertha,” and the other is simply “the orange chair.”
“Big Bertha” is a seven-year-old power chair that weighs 300 lbs. I use her for public transportation and when I travel short distances using the sidewalk. “The orange chair” is a Fold & Go chair I bought online. The Fold & Go chair was designed by a female power chair user, weighs 60 pounds and folds up to fit any car trunk. It’s also water resistant with the battery built into the frame, so you can operate it in the rain without fear of electrocution.
Bottom line, it’s awesome. I use this chair when using Lyft or Uber and personal vehicles.
Why doesn’t every wheelchair user have a Fold & Go or something similar? Power chairs are expensive, typically costing somewhere between $2,000 and $17,000. Medicaid will pay for one chair every five years.
Wheelchairs are like shoes: A different type is required for different terrains. Plus, maneuvering a power chair in tight spaces usually causes lots of damage. I use a manual chair in my home as I have punched holes in the wall using power chairs.
Up in the air
Many wheelchair users refuse to travel by air because airlines are notorious for breaking or losing wheelchairs. Trying to get a wheelchair repaired or replaced will take at least two months. Wheelchairs are legs for some — a broken or missing chair causes one to be confined to a bed or a couch.
Boarding an airplane is a horrible experience for wheelchair users. Airline employees — with no training in handling people with disabilities — physically move the traveler to an aisle chair, which is slim enough to fit in between seats in the plane’s aisle. The aisle chairs have safety straps (that are often broken) to secure the traveler on the narrow chair. The airline employees push you down the aisle and then lift you into your seat.
Once seated on the plane, you are stranded. If you need to go to the restroom, hold it, because the airplane restrooms are inaccessible. I have heard of wheelchair users dehydrating themselves in order to fly.
I recently booked a three-hour flight where I tried to pick a seat close to a bathroom to use the chair backs as railings to lean on while attempting to walk to the bathroom. The closest seats to the restroom were fire exit rows that require physical strength to reserve.
Airplane manufacturers are working on creating planes that accommodate a person’s wheelchair so you can board in your own chair and be secured in the plane. Unfortunately, the designs have not been finalized. This is needed now.
Room service
Before traveling, a wheelchair accessible hotel must be reserved and guaranteed. Unfortunately, trying to book online always requires a phone call to the hotel to secure an accessible room.
There is hope, thanks to the tireless efforts of disability advocates. AccessibleGo is a website that caters to individuals with disabilities and will guarantee accessible rooms.
Simply put, our world is not accessible for wheelchair users — which is why wheelchair users are rarely seen in public. The necessary planning required for the simplest trip is so overwhelming that many wheelchair users do not leave their homes.
The best way to help the disability community regarding accessible travel starts with awareness and education. Tell everyone what you have learned from this column: Let’s make accessible travel a topic that everyone cares about.
This month, I am flying to Washington, D.C. to attend the Disability Policy Seminar. I’m nervous, as it will be my first plane ride with “the orange chair.” I’m also traveling on my own, so I’ll be at the mercy of assistance from strangers.
I refuse to stay in the comfort and safety of my own home. Wish me luck!
Jenn Ochs lives in Boulder and enjoys listening to music, podcasts and audiobooks while painting or drawing. She is a disability rights advocate and a graduate from Baylor University in Texas, which is where she realized that Boulder is the best place to live.
This opinion does not necessarily reflect the views of Boulder Weekly.