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

Having attendants come in every day to help me with personal care, health support, and household duties isn't always easy. We have to adapt to each other's personalities, communication styles, habits. I have to work around their work schedules, and even though I set those schedules with them, it means that I can't always be spontaneous. Their presence compromises my privacy, though if they are respectful and careful, they don't invade it.

One of the issues I deal with is the presence of my attendants at work meetings and social gatherings. Often I need them to accompany me in order to assist with eating, drinking, and positioning. They are there, but their role is obviously different from my role there, and usually from everyone else's. Because they're there for me, I feel a double responsibility: to make them comfortable, and to make clear how I want them to interact in that situation. I sometimes struggle with both.

Work and social situations are different. Professional meetings tend to be more formal, and focused on a particular specialized topic. In such settings, I usually don't expect my attendants to participate at all. I often encourage them to bring a book to read while I'm busy. If I don't need them right next to me, I might suggest they sit in a separate waiting area, where they can read, text or talk on their phone.

For any significantly disabled person in the work world, managing the presence of an attendant becomes important. You need to present yourself as a competent, confident participant with a lot to contribute to the discussion. Even if you're not the facilitator or a main player, you want everyone to understand that you are the one involved in the project, and that your attendant is there to meet your support needs. While you do need someone around to help you with physical or sensory stuff, intellectually you're operating under your own steam. Unfortunately due to stereotypes of people with disabilities, some colleagues may incorrectly assume that this person who's with you understands what's going on better than you do. Or, without thinking it through that far, they may just feel more comfortable interacting with someone who is more like them, that is, not visibly disabled.

When this has happened to me, I have learned to intervene rather assertively. If a colleague asks my attendant a work-related question, I move forward and answer it. By now, all of my attendants know to deflect such interactions back to me. (In fact, they are often almost as annoyed by it as I am.)

On the other hand, I don't want them to feel as if I'm trying to make them invisible. When we arrive at a meeting, if I find myself chatting with a coworker for more than a minute or two, I introduce them to my attendant. If my attendant is going to play any role in the meeting, such as taking notes or turning pages for me, I introduce her to everyone, and explain what she'll be doing.

At social gatherings – parties, dinners with friends, and dates – the rules are a little looser, and more complicated. Again, my attendant's primary role is to assist me with whatever I might need, from giving me drinks of beer, to adjusting my ventilator settings, to driving me home. Unlike work meetings, there's no set agenda, no special expertise required. But the stakes can still be high. If these are new or potential friends, you want them to get to know you, not to focus on your assistant. On the other hand, people are people; mix them together and you never know who will connect and how. At parties and other convivial events, trying to micromanage or intervene in personal interactions is fairly futile and, worse, it's rude.

You can still have clear rules and expectations for your attendants at parties. It's perfectly reasonable to require that they be attentive and available to assist you when needed, that they stay sober, that they respect your confidentiality, and so on. Keeping them from talking to people, though, is more trouble than it's worth. And it may demonstrate an undeserved lack of respect.

When I was much younger, I would sometimes get jealous of my attendants who, back then, were more likely to be my age peers. (It's much different now; some of my attendants are literally young enough to be my daughters!) At college parties, my attendants would seem to talk so easily to my classmates, whereas I was shyer and more insecure. Once or twice I got angry at them, feeling as though they were butting into my social life. Of course they weren't really trying to do that. They were just doing what came naturally, chatting with people in a casual atmosphere while they worked.

As I've matured, I've learned that the best approach to social situations is to relax, to be myself and to let my attendants be themselves. In business situations, we both have to behave somewhat differently. I've learned to guide and then to trust my attendants, to make my expectations clear. In both situations, I recognize that I have to rely on myself to make the kind of impression I want to make.

I'm always interested in knowing how other people handle these situations. What's your approach?

Copyright 2010 by Laura Hershey