The change can be creepy. I think this resonates and is true in all areas of life. As a person with a disability, I find that things are constantly changing around me and within me, but I often forget that there are so many others going through the exact same things.
Recently I remembered this fact after a moment of human connection that triggered a resonance viral twitter feed, and it all started in the women’s bathroom of a cinema. As a younger person with mobility aids, I am often stared at. I’m often approached by strangers with invasive questions, and I’ve learned to be prepared when someone approaches me, which happened while I was queuing for the accessible booth. I saw her out of the corner of my eye, an older woman leaving the line and coming towards me. I went through every possible uncomfortable thing that could possibly happen until she stopped in front of me.
She stopped. And then she asked, “How long have you been using a cane?” Not the question I expected. “Almost 10 years,” I answered hesitantly.
And then she looked me in the eye and said, “Was it hard?”
We often expect elders to know better than us, to have more experience and answers than us, and I looked at this woman and recognized the fear, the vulnerability, waiting to be pushed back . And I knew exactly what she was asking for. She was in the same place I was eight years ago, just before I started using my cane. She wanted to know if she was alone. She wanted to be reassured.
“Yeah. It was terrifying,” I told her. “It took me smashing my face into a Walmart parking lot to accept that I needed help, and even then it was hard.”
We ended up talking for several good minutes, just standing by the sinks. She told me about her instability and dizziness, how mortifying and scary it was to have to ask strangers for help, but even worse to admit she needed to change. I think almost anyone who uses mobility aids can relate to this, regardless of age. Choosing to move forward with a mobility aid―wheelchair, walker, cane or crutches―is a time of great vulnerability. It’s coming out of a precipice and not knowing what’s going to happen. Am I jumping? Am I falling? Who have I become now? How will this change me?
I have Ehlers-Danlos syndrome. I struggle with joint dislocation and chronic pain, among other symptoms, and started using a cane when I was 19 or 20. I started using a wheelchair intermittently when I was 21. I am now 28 and still making changes and adjustments to how I interact with the world to suit my needs. At the beginning, I fought tooth and nail, saying to myself: “It’s not this wrong. I’m not this turned off.’ But I was. I am. I vividly remember that night in the parking lot, my mouth full of gravel and pavement. That’s when I realized something had to be I got up, and walked into that store, and bought my first cane right there, and I still got that cane.
But why is it so hard to bite the bullet and get a mobility aid? What holds us back? It is fear and vulnerability. To fear of vulnerability. Being stigmatized and stared down. It’s like giving in and giving up, and admitting to the world that something is wrong with you. It feels like a loss of control.
It is like that, but it is not. People often say “in a wheelchair” or “confined to a chair” because they see disability as a prison or a punishment. They think we should be ashamed of a cane or a chair, or that we should live such terrible lives because they differ so much from the experiences of able-bodied people. Still mobility aids help us regain our control, our independence. They don’t bring the discouragement and rejection we expect, but freedom. They allow walks with friends, outings to the shopping center, walks with the dog. They bring joy.
The woman in the theater bathroom and I talked for a few minutes about this fear of the unknown, ironically, in a place where we all try to ignore each other as much as possible. She left feeling a bit more confident in the decision to use a cane, at least I hope so.
After posting about this interaction, thousands of people chimed in with their own experiences. There has been a tidal wave of connection between strangers, also caught in the isolation that fear often brings us. Thousands of people discussing how difficult it had been for them reached out to share their stories, and thousands of people in the midst of this same crisis responded for reassurance.
A moment of connecting on canes in a bathroom led to a movement of people with disabilities coming together, showing each other that change doesn’t have to be scary. It’s time to move on and accept help. To revel in the rediscovered joy, to reassure those who were still afraid to take the plunge.
Disability is so stigmatized that we don’t even realize how much we internalize it. A refrain I often hear is “not disabled enough”. “I’m not handicapped enough for a walker. I’m not handicapped enough for crutches. But what does that even mean? If you need help, you need it. There is no “sufficiently handicapped”. It is not necessary to prove to others what you choose to do with your body. There is only this you need. Recovering his body is difficult. Getting through this fear takes work, but it is so worth it.
I don’t want to call it “life after fear” because I won’t lie: fear never goes away completely. I caught myself minimizing my own issues because I keep rejecting my own needs… but that can be life beyond to fear. Beyond fear there is joy and friendship, connection with other disabled people, the freedom to live an independent life. A moment of vulnerability can make all the difference to someone else, and trying to live authentically as yourself can help others gain the confidence to do so, too.
So yes, it’s terrifying to jump from the edge into the unknown. And embracing vulnerability takes bravery and courage, but beyond that? There is a lifetime of possibilities. Trust yourself to take the leap into the unknown – to embrace this vulnerability and find joy and freedom.