The cost of unreliable accessible transportation

Last week, I sat with my service dog near my home’s entrance, waiting for public transportation to take me to a doctor appointment. It was a cool fall day with drizzling rain — the kind of day that made me want to cancel the appointment and cozy up by the fire instead. As I waited, I mentally reviewed my substantial to-do list.

Because I have Friedreich’s ataxia, I use a wheelchair and have stopped driving. So I need reliable, wheelchair-accessible public transportation.

Eventually, I called the public transportation agency and learned that my scheduled ride was running late. I wondered why no one had called or texted to let me know. I still would have been waiting, but at least I could have waited inside.

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During the appointment, I learned what I had already suspected: I have arthritis in my left shoulder because of an earlier fracture. What I did not know — and learned — was how to manage it.

Afterward, my return ride was scheduled to arrive between 12:15 and 12:45 p.m. At 12:15, I settled beneath the medical building’s entryway roof to wait. By 12:55, the van still hadn’t arrived, so I called again. I was told the driver was another 10 to 15 minutes away. The ride finally arrived at 1:05. Luckily for me and my lengthy to-do list, I live less than a five-minute drive from this doctor.

Before and after the visit, my anxiety mounted as I thought about the work still waiting for me. This was not housework or another task I could easily postpone; it was work with firm deadlines.

Altogether, I spent two hours and 40 minutes waiting for a wheelchair-accessible van for a 20-minute appointment. No one apologized or asked me if I would be late for anything. Once again, I felt the sting of ableism. I felt others assumed my time wasn’t valuable because I spent so much of it on things like doctor appointments. This wasn’t the first time I felt that way.

There is ableism in devaluing the time of those with disabilities

Beneath that disregard lies a familiar assumption: Disabled people do not have important places to be or meaningful things to do. Perhaps others imagine our days are open because disability already requires so many appointments, phone calls, therapies, and forms. But the time those obligations consume is not free time. It is time taken from our jobs, families, friendships, errands, rest, and everything else that makes our lives our own.

When you accept the accessible public transportation you are given, remember no one gave it to you. Our disabled forefathers and mothers fought for us to have the right to accessible transportation.

When a transportation provider leaves me waiting without an update, the problem becomes more than an inconvenience. The unspoken message is that my schedule is flexible, my deadlines are optional, and the people counting on me can wait. Too often, the nondisabled world treats accommodations as favors, then expects disabled people to remain endlessly grateful and patient when those accommodations fail. We are left to absorb the consequences quietly.

That is ableism. It reduces us to our disabilities and the services we use, ignoring the rest of who we are. Disabled people are employees meeting deadlines, parents picking up children, volunteers honoring commitments, friends meeting for lunch, and neighbors trying to get home before the rain gets heavier. We also deserve leisure without having to justify it.

Accessible transportation is meant to create access, but that access falls short when reliability is treated as optional. Genuine respect would mean realistic pickup windows, prompt updates, and accountability when delays become routine. Above all, it would mean recognizing that disabled people should not have to prove our productivity before our time is valued.

After all, my lengthy to-do list doesn’t make any of this matter. My time would still be mine if I had planned to sit by the fire, read a book, or do absolutely nothing. The ableist assumption is not simply that disabled people are less busy; it is that our choices, responsibilities, and hours carry less weight. They do not. We deserve the same basic courtesy everyone expects: to be told when plans change, to make decisions about our own day, and to have our time treated as valuable (even when circumstances mean our needs can’t be met — like an unforeseen traffic jam).

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.