Being a wheelchair user requires a lot of planning. Any trip requires planning in advance.
I cannot swallow so I always need to have an ample supply of saliva wipes available. I use towels to manage my discharge. Some days I have a particularly heavy discharge so I refer to myself as juicy. One of my caregivers affectionately calls me juicy fruit.
Because I cannot swallow, all of my nutrition is through a feeding tube surgically placed in my stomach. I cannot take anything by mouth. I have to bring food, water, a feeding syringe, and a tube extender with me, in addition to spit-up wipes. I feed every 4 hours, so if I’m out all day I need to take supplements on demand.
I have very dry eyes and I always need to use eye drops. I carry Refresh Eye Drops with me. They’re not cheap, and living on disability, every penny counts. If I’m going out for two hours, I’ll bring 10 vials of eye drops. A box of 70 drops costs $30.
I can’t drive, so I rely on public transportation, ride-sharing services, and the generosity of friends and family. Planning an outing requires me to have transportation and make sure wherever I go is accessible. The Americans with Disabilities Act (ADA) became law in 1990, but 34 years later, most places are still inaccessible.
I spend a lot of time lobbying for disability rights in the state capitol, and every time I visit the People’s House I’m appalled by how inaccessible the building is.
The only accessible restrooms are in the basement of the four-story building. The building has many stairs, and the House and Senate floors are accessible only by wheelchair lifts operated by a sergeant at the top of the stairs. There is no way for a wheelchair user to reach their representatives on their own, and with so many people competing for representatives, it is nearly impossible for a wheelchair user to get noticed. Oh, and from January to May, the Senate only meets from 9am to noon.
to come and go
Most power wheelchairs require a wheelchair accessible vehicle that can handle their weight, which is usually around 300 pounds, which is why you see wheelchair buses operated by Access-A-Ride and Via.
The problem is that there aren’t enough drivers and buses to accommodate the number of wheelchair users. You must book a ride at least one day in advance, but one week in advance. Access-A-Ride requires that you be at the reserved location for at least an hour, and the location must be three-quarters of a mile away from a stop on a fixed bus route. All rides are given a 30-minute pick-up and drop-off window. If I’m not ready to leave within five minutes of the pick-up time, the driver will leave me behind. Because Access-A-Ride packs riders together, I am often delayed by other riders.
The whole process is very time consuming, you have to spare at least 3 hours a day for a 15-minute haircut.
That’s why I have two power wheelchairs: one I call “Big Bertha” and the other I simply call “the orange wheelchair.”
The “Big Bertha” is a power wheelchair purchased 7 years ago that weighs 300 pounds. I use it for short distance travel on public transportation and sidewalks. The “Orange Chair” is a Fold & Go chair purchased online. The Fold & Go chair was designed by a female power wheelchair user, weighs 60 pounds, and folds up to fit in the trunk of any car. The frame has a built-in battery, so it is waterproof and can be used in the rain without worrying about electric shock.
Bottom line: it’s great, I use this chair when taking Lyft, Uber, or personal rides.
Why doesn’t every wheelchair user have a Fold & Go or something similar? Power wheelchairs are expensive, typically costing anywhere from $2,000 to $17,000. Medicaid pays for one wheelchair every five years.
Wheelchairs are like shoes, different terrains require different types. Furthermore, maneuvering a power wheelchair in tight spaces often results in major damage. I’ve put holes in walls with my power wheelchair, so I use a manual wheelchair at home.
up in the air
Many wheelchair users refuse to travel by plane because airlines are notorious for breaking or losing wheelchairs. Any attempt to repair or replace a wheelchair would take at least two months. A wheelchair is like a leg for some people, and if it breaks or gets lost, they end up spending the day in bed or on the couch.
Boarding an airplane can be a terrifying experience for wheelchair users. Airline employees who are not trained to accommodate disabilities physically carry passengers into aisle chairs that are narrow enough to fit between the seats in the aisle of the plane. The aisle chairs have safety belts (which are often broken) that secure the passenger in the narrow chair. The airline employee then pushes the passenger down the aisle and then lifts them up to their seat.
If you sit on the plane, you’re left behind. If you feel like going to the bathroom, hold it in because you can’t use the bathroom on the plane. I’ve heard stories of wheelchair users becoming dehydrated just to get on the plane.
I recently booked a three-hour flight and was trying to get a seat close to the bathroom so I could use the back of my chair as a grab rail while I walked to the bathroom. The closest seats to the bathroom were in the emergency exit row, which required a lot of physical strength to reserve.
Aircraft manufacturers are working on aircraft that will allow wheelchair users to board and remain safe on board. Unfortunately, the designs have not yet been finalized. The need is now.
Room service
You should book and secure a wheelchair accessible hotel room before traveling. Unfortunately, if you try to book online, you always have to call the hotel to secure a wheelchair accessible room.
Thanks to the tireless efforts of disability advocacy groups, there is hope: AccessibleGo is a website that caters to the needs of people with disabilities and guarantees accessible rooms.
Simply put, our world is not accessible to wheelchair users, which is why you rarely see wheelchair users in public – and why many wheelchair users never leave their homes because there is so much planning required for even the simplest trips.
The best way to support accessible travel for the disability community starts with awareness and education. Share what you’ve learned in this column. Let’s make accessible travel a topic that everyone cares about.
This month, I’ll be flying to Washington DC to attend a disability policy seminar. I’m nervous because it will be my first time flying in my “orange wheelchair.” I’ll also be traveling alone and relying on strangers for assistance.
I refuse to stay in the comfort and safety of my home. Good luck!
Jen Ochs lives in Boulder and loves listening to music, podcasts and audiobooks while painting. She is a disability rights advocate and a graduate of Baylor University in Texas. She discovered that Boulder was a great place to live.
Opinions do not necessarily reflect those of Boulder Weekly.