by Laura Hershey © 2010

During Thanksgiving season, it's time to talk about gratitude. This is a tricky subject for people with disabilities. It has its pros and cons. The positive is that there really is so much to be grateful about, and doing so helps us feel good and live well. The negative arises out of a whole history of exclusion and power imbalances. I'll start with the things that make me feel grateful.

I'm grateful for my partner, Robin Stephens. We totally stress each other out at times. Have you ever been in a 20-year relationship? It's not easy. But when it's good, it's really amazing. When I was young and single, my favorite song was Cat Stevens' "Hard-Headed Woman." The music was melodic, the lyrics were beautiful and something told me they were true.

I'm looking for a hard-headed woman,
one who will make me do my best.
When I find my hard-headed woman,
I know the rest of my life will be blessed.

I found mine, and yes, the rest of my life has been blessed.

I'm grateful for our daughter, Shannon, who entered our lives and our home only recently, and has transformed my existence in explosive, unexpected, absolutely wonderful ways. As I write this, we are in Southern California on a family vacation. I have watched Shannon's pure delight at dancing in the ocean for the first time ever, collecting seashells, writing in the sand, riding the carousel at Santa Monica Pier, having buffet breakfast with Mickey and Minnie Mouse and Goofy and Stitch, touring Disneyland, and watching fireworks from our hotel balcony. I've always loved traveling; sharing that with Shannon makes it so much more fun.

I'm grateful for my family of origin too, my Mom and Dad and brother John, who raised me well, and continue to be an important part of my life. I'm also grateful for Robin's mom Nancy, who lives in San Diego but stays connected with us through phone calls and visits. She's with us here in our hotel, and in fact, she generously arranged it for us through her timeshare membership.

I'm grateful for the disability community. It's diverse, dynamic, fractious, cantankerous, complacent, focused, distractible, powerful, pressed-down, and always enduring. Its members sustain me in critical ways. Disability rights groups such as ADAPT and the Colorado Cross-Disability Coalition and Not Dead Yet defend my rights to public transportation access, entry to local businesses, attendant supports, Medicaid coverage, and LIFE. Disabled women and queer folks and people of color engage me in understanding intersectionalities among gender, race, and disability oppression, and the need to move beyond rights toward real justice.

I'm grateful specifically for the artistic disability community. It feeds my creative soul, and validates my own efforts at writing poetry and creative nonfiction.

I'm grateful for disability services and support programs that help people live better, integrate, and participate, though they often fall short. I'm grateful for the advocates who try to keep those programs honest, though they often fall short too.

I'm grateful for my body, though it often falls short. It's always had its "issues," to use a euphemism, and as I age these are multiplying. But it's who I am and how I interact with the world and other people and myself. My body hurts me and limits me more than I would like. It also receives and processes art and music and ocean breezes and delicious Vitamixed food. It sends out my voice, my voice of request and direction, my voice of protest, my voice of poetry and prose, my voice of desire. My body is my spirituality, it's all rooted right here in my skin and gut, in my clitoris and tits, in my real, weakly-beating heart and my squishy gray brain.

I'm grateful for my spectacular attendants, who meet my needs skillfully, support my choices, bring extremely useful additional talents to their jobs, such as wheelchair repair and culinary art. Four of them have made this trip possible, successful, and comfortable, despite some difficult disability-related and travel-related conditions. Of course I'm also grateful for the Medicaid program that pays for their services, without which they wouldn't be here at all, and neither would I. I'm also grateful for the Medicaid "work incentive" rules which enable me to write and consult, earn money, and still keep these services.

I'm grateful for many other things. I'm grateful for my house in Englewood, Colorado. I'm grateful for my "life support" equipment – my ventilator, sip-and-puff wheelchair, and Dragon NaturallySpeaking by which I send this blog post out into the world. I'm grateful for the other writers with whom I've developed exchange-and-critique arrangements, like Michele and Kathy, and also the Lambda Lovelies.

So now for the dark side of gratitude. All too often, people with disabilities are pressured to feel gratitude for things that are their basic human rights – subsidized housing, support services, inclusion in the community, basic acceptance and respect. Some people think that disability is a drain on the economy, and an imposition on others. They don't want to be reminded of the prevalence and inevitability of disability in any society, in any person's experience or family. In response to this deep discomfort, they try to impose conditions on anything "given" to people with disabilities – conditions like passiveness, submissiveness, limited demands, and constant thank yous.

We have to demand the things that are essential to our lives, equality, and quality of life. We must refuse to feel gratitude for these, except the normal level of gratitude that anyone might feel for living in a time and place that still supports human life. We can't succumb to feelings like embarrassment or shame regarding our needs, even if those needs are more extensive than the average person's needs. That will only reinforce and perpetuate our inequality, and the pulling away of vital state- and federally-funded support services.

Gratitude is natural and healthy, but should never be obligatory. Identifying and sharing our real sources of gratitude is a good counter-balance to the tendency for self-destructive gratitude.

© 2010 by Laura Hershey

by Laura Hershey

I don't know whether nondisabled people, or even the newly injured who are still getting accustomed to moving through the world in a wheelchair, can fully comprehend the connection between person and machine. When I'm in it, my wheelchair really does feel and function like a part of me. As such, I expect other people to give my wheelchair parts the same respect and/or affection that I want for my fleshier parts.

Here's what got me thinking about this: Last week I was getting on the city bus, heading home after a busy day. I backed onto the lift and the driver raised it. I started backing down the aisle toward the wheelchair space. Suddenly, from directly behind me, I heard a man's unnecessarily loud voice say, "I gotcha, baby sister!" Simultaneously I felt my wheelchair handlebars being gripped tightly, and pulled.

"No!" I shouted. Because I use a sip-and-puff tube to operate my wheelchair, my mouth was busy, so I had to keep my response short. "I got it!"

He kept pulling, and repeated, "I gotcha, baby sister!" He added, "I'm helping!"

By this time, the driver had converted the lift back into steps, and my attendant Krista had climbed aboard. She saw the guy yanking on my handlebars, and yelled, "Leave her chair alone!"

Perhaps he instinctively had more respect for someone standing, confronting him at eye level. He finally let me go, but continued to protest that he was just "helping."

Later, as I thought about this, I tried a thought experiment: What if a man came up behind an ambulatory woman and grabbed her tightly by both shoulders and started forcibly guiding her toward a seat? She would no doubt protest loudly, as I had done. If the man hesitated to release his grip, I imagine that another passenger might physically intervene. If a police officer could easily be summoned, the man might get a warning, or maybe even be arrested for assault.

For that's exactly what this felt like to me – an assault. It was a direct, physical affront to my person. This man wasn't just messing with some piece of equipment. He was interfering with my mobility, my power to position myself, to go where I want. My wheelchair is a part of my means of being in the world. In other words, it was part of me that he grabbed – my wheelchair, my body, myself.

Would anyone else recognize this? If I had tried to charge him with assault, would the legal system have supported me? Were other passengers aware of the depth of this violation? Or did they accept his statement that he was "helping" me?

It's hard to speculate about what other people are thinking, or about what might have happened if. But this uncomfortable encounter, with a man whose face I never even saw, did at least serve to remind me of the intense relationship I have with my wheelchair. When it's broken or unavailable to me, I feel limited in a way I never do when I'm in it. When it's working well, I move freely with its wheels and motors, and I interact with others from its comfortable seat.

I don't want other people to regard my wheelchair as public property, available to anyone who wants to use it for a foot rest, a topic of inappropriate inquiry, or a power trip.

But nor do I want them to view it as a barrier. That has also happened too many times. A few years ago, at the end of 10 days with a group of new friends and writers, our teacher was offering warm farewell hugs all around. She got to me, and hesitated. She wasn't sure what to do, how to navigate all the hardware in order to get close to me.

To her credit, she asked. I answered: "The left side works best. Come over here, and don't worry about leaning against the chair." It took some negotiating, but I got my hug.

Such qualms can be even more of a problem when pursuing romance. Potential partners who might have been attracted to me sometimes seemed put off by the physical presence of the wheelchair. Why? Maybe they saw it as an alien presence, a strange object that would always be in the way. Maybe they felt that it overwhelmed and diminished me, this big complicated contraption of electronics, wires, tubes, molded surfaces and customized supports. Maybe they had swallowed cultural stereotypes of wheelchairs as symbols of confinement, inability, immobility.

I know better. I know my wheelchair is part of me, and a part of which I am quite fond. It will change over the years – just like my other parts. It will even be replaced from time to time – just like all the cells in my body. There will be times when I fight it, times when I accept it. Sometimes we'll get along, and other times we'll be at odds.

Either way, the rest of the world better treat it right!


© 2010 Laura Hershey