My Formal Notice

Posted by Candace Cable in Life After Paralysis on April 18, 2016

So there I was, enjoying my Sunday morning, sitting at my desk, smiling to myself and just settling in to read one of my favorite weekly newsletters, brainpickings, by Maria Popova. Maria’s newsletter is dedicated to a theme and several authors that lend thought and word to the theme. I was feeling pretty good, more pleased and happy, I would say was my mood.

I don’t know how Maria finds the time to read all of those books, and maybe she doesn’t, or maybe she’s a speed reader, I don’t really know, but what I do know is she opens my mind as if she has a key and turns it with each insight she leaves upon the page for me.

Along the way Maria sprinkles links of where you can find the books, most of which are at our libraries, so free or that we purchase and own. Oh, and did I mention this about this lovely newsletter that Maria composes, it has no membership fees, kept alive completely by donations, no ads or so the newsletter says? I do my part, I donate so Maria can continue to surprise me.

So, back to my moments of bliss, reading on a Sunday morning, when I spy that “no ads on the site” statement. But, I’ve seen a couple banners down the left side of the email blast of the newsletter, these banners are not on the website. I decided to investigate further, I clicked on one of the banners, the Holstee Manifesto.

I was redirected to the Holstee site and there I discovered that I’ve seen this manifesto before. You may have seen the poster that states, “this is your life, do what you love and do it often. If you don’t like something change it, if you don’t like your job quit. If you don’t have enough time stop watching TV. Stop over analyzing, life is simple. Open your mind, arms and heart to new things and people. We are united in our differences.” There’s much more, bla, bla, bla, I dig the poster.

Then, a video caught my eye, I’m attached to shinny objects, so I clicked play. As this video began to run, faces of smiling, happy people wearing bike helmets popped up, one after another and I felt myself wishing I would see someone with a disability in this video. This feeling of yearning, that please let there be a person with a disability, in any ads or music videos or most anywhere. This happens to me often. I wanted to see someone like me, with a disability, so I’m more included in life moments, even if vicariously with another’s image, I want to see it.

The video begins, one man riding a bike through an enclosed bridge, built for walking and riding, next to a subway, as first words of the manifesto flashed across the screen. Then another person standing with a bike on the sidewalk in New York City, and child on a bike, smiling. I’m fretfully anticipating, please someone like me. Then a woman gets off her bike looking intently for someone (me maybe) she meets the first guy, more words from the manifesto flashing across the screen.

I watch with antsy eagerness, a guy on a three wheeled bike cruises in with the words, “some opportunities only come once, seize them’ on the back of his bike. I pause, could this be me and my opportunity for disability awareness? I hope soon, maybe there’s someone on a handcycle, please, I say in my thoughts, this is a cool video and I want to be cool too. More smiling, more words, more people on bikes gathered together at the side of a river, eating ice cream, laughing, a flash of the Statue of Liberty.

Then they all ride, together in the street, joining an organized ride with lots of different people and different bicycles, tall ones, small ones, wide and skinny tired bikes and still no one on handcycle or tandem bicycle, no one like me. The video ends and I felt sad, even after all the manifesto sayings I believe in, because I didn’t see “a’ me in the crowd.

Much of the world feels disability is a “bad thing” as Australian disability activist Stella Young stated so well in her TED talk. Disability is such a bad thing that most people don’t even want to say the word, disability, let alone see people with disabilities having fun. People have come up with alternate words like handi-capable or differently-able just to push the word disabled away. I see avoiding the word disabled as pushing the idea of being disabled, away and I take this personally, it annoys me. I feel I’m being pushed away.

Well, truth is, I’m not going away and disability isn’t going away either, it’s a life experience and disability needs to be included in all portrayals of life. Rarely do I see someone like me, a woman using a wheelchair for mobility, in advertisements, videos, movies, TV, store windows, books, or any mass media. I say rarely, because there are images I see, here and there, I’ll acknowledge that. But exposure has to happen, more, so awareness of issues like unemployment, institutionalizing disabled people instead of home care, can be revealed, looked it and solved.

Awareness of disability or disability 101 is still needed, in a big way, for the lies about disability to be unmasked and we need to just say the word disabled as the brilliant #SayTheWord campaign from Lawrence Carter-Long pushes us to do so. Or as the claiming crip blog spot tells us, “We need awareness because even in 2016 being disabled is often synonymous with being less than human.”

So is it, awareness will bring exposure or is it, exposure will bring awareness? My answer, it’s both, awareness and exposure, happening at the same time, so there is nothing without us, everyone is included in the conversation of building a world we want to live in, that's my manifesto, my formal notice and I’m coming to get you on board. Disabled Is not a bad thing. And just for the record, I decided that the guy on the three wheeled bike was my representation and I carried on reading my newsletter.

Blessings to All, in joy,

Candace #SayTheWord

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.