Commuting with Invisible Disability: An NYCSeatShare Idea

Update: The response to this post has been incredible. And for that, I thank both you, the reader and the staff of Medium for helping to spread the word about this idea. I just had a meeting with Commissioner Victor Calise at the Mayors Office for People with Disabilities (MOPD) and he loves the idea. Michael Graves Architecture & Design has also signed on to design the badge and logo!

Commissioner Victor Calise of the NYC MOPD!

Commuting with Invisible Disability

I am a 32 year old New Yorker who navigates the city with a MetroCard and a cane. My disabilities are sometimes visible and other times completely invisible. One blink and the way you perceive my abilities can drastically change. Upon boarding a packed subway, I recently asked for a seat reserved for persons with disabilities. The woman standing between me and the seat informed me that it was filled, something so clearly obvious it didn’t need to be stated. This created a highly unwanted situation where I had to vocalize that I was in fact disabled and did in fact need the seat I was requesting. She reacted by glancing down, discovering my cane, and apologizing, telling me she hadn’t seen it. And that’s when she graciously assisted me in requesting the seat she had previously stood in the way of.

When I had initially boarded that 2 train, I scanned the perimiter trying to find the most able bodied twenty-something man who would be kind enough to give up his seat. And he did so without asking any questions, because he saw my cane. He must have seen other things as well. I was an athletically dressed, otherwise healthy looking 32 year old who has previously been asked to offer up a seat when my cane was less visible. What if the man I had requested a seat from had a heart or lung or neurological disorder. What if he had just left work early, feeling ill? What if I hadn’t been using my cane? My odd gait cannot be detected when I am standing still. This is the conundrum of invisible disabilities. Things aren’t always as they seem.

So what options are afforded to people with invisible disabilities? There are some who will opt to travel with a device such as a cane, a walker or a wheelchair to create visibility, to assure their needs will be met. Others may begin to withdrawal, becoming invisible to the world, much like their disability. And some will just risk it. It meaning their safety and the safety of others by attempting to stand on public transportation or walk from the back of the parking lot. None of these options are ideal, but when you read the notice below, it shows how assistive devices speak for us in ways our voices can’t.

These notices were posted anonymously in a town in a Portland Oregon neighborhood in 2013.

My friend Kellen, a fellow ableist blogger from the Pacific Northwest recently relayed an interaction he had over a handicapped parking spot with a community watchdog in a letter to the editor.

“You don’t look very handicapped to me!” she yelled in a condescending tone. Her mind was made up before I even got out of the car. As soon as she saw my cane, the older lady continued with “Oh good, I’m glad that you are,” and without remorse explained that she does this all the time … and it’s for my own good.

She was glad. The full letter can be seen on his beautiful blog Wheels and Red.

So while I am someone who relies on and can only relay my experiences through public transportation, I want to acknowledge that this can and does happen in and with every single form of transportation. That being said, I wanted to hammer a quick point home to my fellow NYC commuters.

If you’re on the AC or 1 train and heading downtown, there’s a chance the person next to you just came from New York Presbyterian, Columbia. Pick any train heading from Columbus Circle (ACBD 1 NRW) and you have St. Lukes Roosevelt. The L Train? Beth Israel. Any train out of Grand Central (456 7 S Metro-North) could be someone coming from NYU. And if they’re on the train going the other direction? Perhaps they’re heading to. You cannot ride a train or a bus, and you cannot take a cab that will not eventually lead from or to one of the leading hospitals in the nation. Invisible Disabilities are around each and every one of us. All day. Every day. There’s a high chance you will go a lifetime without someone speaking up, but you won’t go a day without encountering someone who wishes they could. I want to change this. I want to do so in a demystifying and destigmatizing way. I just need some help. Here’s my idea.

The Idea: NYCSeatShare

Please forgive the drawing, I’m not the designer that I am seeking. But this is how the idea of NYCSeatShare came to be.

I have been trying to convince a friend to carry a collapsable cane in her bag. She has an invisible illness and frequently needs a seat. When she can’t get a seat, oftentimes during rush hour, she is too uncomfortable to ask. I felt she could use a collapsable cane in the most dire of circumstances to speak on her behalf. But that has not happened for a variety of reasons, all dealing with her pride and the stigma of assistive devices.

I then thought, what if she wore something beautiful that could be her voice. A badge, or a broach or a lapel pin seemed like the most obvious item. A badge grants authenticity, lapel pins and broaches are beautiful accessories. Someone with an invisible illness could put the badge on and take it off as their need arises. But when I realized my friend had no desire to wear her illness, I nixed the idea.

The Evolution of NYCSeatShare

The lightbulb moment came when it occurred to me that there actually should be an NYCSeatShare badge, but it shouldn’t be worn by those who need a seat. The NYCSeatShare badge should be worn by those who will gladly give their seat up. The badge serves as a promise that if someone needs and asks for a seat, they will be given one. No questions asked.

To be successful, the NYCSeatShare badge will still need to be covetable and beautiful so that SeatSharers will want to wear them. SeatSharers will take pride in the freedom they will be providing to those who need it most. And best of all, for the person with the invisible illness, the person feeling a little flu like, or the person who is struggling with pain, all it will take is a quick nod or a glance at the pin to get your needs met. This interaction could be done on a crowded subway without anyone else even taking notice, it may not even require an exchange of words.

The NYCSeatShare badge will be a token both of fashion and inclusive thought, of understanding. It doesn’t need to be large, but it must be universal in design so that a person can scan a train to see if someone is wearing it. Also it needs to look just as good on a cashmere coat or blazer as it does on a gym or school bag.

The logo will be reinforced through repetition. I imagine stickers on the back of handicapped seating and I dream of an MTA advertising campaign. But most importantly, the NYCSeatShare badge must be affordable. The beauty and message of the badge will make it a status symbol, the affordability will assure that the status isn’t one’s financial acuity but their willingness to give. Perhaps various designers could be given permission to use the logo on a variety of products.

So here’s what NYCSeatShare needs.

NYCSeatShare needs the support of local politicians. I’ll be reaching to the Mayors Office for People with Disabilities as well as Senator David Carlucci and Assemblywoman Sandy Galef who made New York State the first state to update the traditional handicapped sign with the more inspiring and inclusive Accessible Icon.

NYCSeatShare needs approval of the MTA. This means I’ll be reaching out to the board.

NYCSeatShare needs the skills of a world class designer. Where else is the NYCSeatShare logo and badge going to come from?

NYCSeatShare needs the backing of a local hospital. Both doctors and patients can help inform one another about the program. Also, it would be amazing if the Center for Independent Living hopped on board.

NYCSeatShare would also benefit from the support of every affected Society, Association and Foundation. Some of the first that come to mind are the MS Society, the Invisible Disabilities Association, and American Heart and Lung Associations, and the Lupus and Arthritis Foundations, etc. Is it possible for a handful of organizations to band together to make this idea come to life?

I don’t expect anything to happen overnight, but I am dedicated and would love your support. I’ll be updating when and if there are updates. If you have thoughts, ideas or if you know really important people, you can reach me at thegirlwiththepurplecane [at] gmail.

Update: Check out Tokyo’s Help Mark Badge

The Inclusive Liz Jackson

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I write about the intersection of disability and style. I love beautiful products.

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