When Taking Amtrak in a Wheelchair Revealed a Frustrating Truth About Accessibility

Until last February I always (naively) believed that for the most part we lived in a disability-friendly world. I thought surely in this day and age things would be easy for those who had to use wheelchairs, canes and walkers. I was wrong. 

Really wrong.

I am shocked and saddened by what I have found since I have begun using a wheelchair. Getting anywhere is a challenge. How do we get me and the chair up on the sidewalk? How do we get the door open so I, you and my chair can fit? How do we find an elevator since the chair and I cannot go up the escalator? I am so grateful for the chair and the fact that it allows me to leave my bed, but navigating it figuratively and literally is hard. 

Last May, my parents and I traveled to New York City from Virginia to meet with my neurologist. It was a grueling few days with lots of hard answers about my Lyme-induced small fiber neuropathy and complex regional pain syndrome. Traveling when you are chronically ill and in pain is a miserable time, no matter the vehicle. It’s so strange that just by sitting you can become in so much more pain. It was a rocky ride, and after several hours, my parents were hungry and wanted to get some dinner in the dining car. I joined them for a change of scenery.

Unfortunately, Amtrak can say they are wheelchair-friendly, but it is anything but the truth. 

Just getting through the next three train cars was frustrating and somewhat demeaning. My wheelchair barely fit through the aisle, and I apologized every other second to avoid hitting someone’s elbows or having the wheels get caught in a blanket, as the seats were not facing me. In my head I thought, “I have apologized my whole life for my body, and here I am doing it again.”

Because we were coming up behind people, I could see people take me and the chair in as I passed by their seat. My first instinct was to feel ashamed, because I am different and because I felt like a burden unable to walk by myself. My cheeks flared, and I tried to avert my gaze. At that point was fairly new to being in a wheelchair and just felt like everyone was staring all the time.

We finally made it to the dining car, but then we realized my wheelchair couldn’t fit down the hallway, and I simply couldn’t walk that far. I stood halfway up from my chair, unsure what to do, and started crying while all of these passengers behind us gaped.

I felt so very small in that moment.

Thankfully a porter saw what happened and said, “I will take your orders and bring your food. Go sit at these tables in the adjoining car,” and a very nice man with an epic beard grabbed me by my waist and helped me hobble to the nearest seat. His kindness in this situation touched me deeply. He was one of the only people who didn’t stare or make me feel “different.”

While we waited for our food, I thought about all the people who have gone through this their whole lives and how much more this world needs to change to accommodate people with different capabilities. I don’t know why I am going through what I am going through, but I now see the world very differently from that wheelchair. 

On our way back to our seats I felt so angry, and used my arms to propel myself forward latching on to arm rest after arm rest and pulling myself forward while my dad steered me. I didn’t care if people stared. My anger about the situation fueled me forward. This shouldn’t be the way things are.

I stopped apologizing for my body.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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