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

Frontline disability support workers, particularly in-home attendants funded by Medicaid and similar public programs, for the most part get a raw deal in terms of wages, benefits, and opportunities to organize. Ironically, considering the high demand for such workers, there are still few material rewards to attract them to the field.

Perhaps that will change, driven by demographic factors. More Americans are getting older and needing assistance with daily living activities. Openings for home health aides and personal care attendants are expected to increase rapidly over the next couple of decades. That demand for labor should be leveraged into demands for labor rights. Those of us who need the services should join forces with the workers, and find ways to create more just systems of service and employment. Whether someone does attendant work as a career, or as a transitional job between careers, or to support themselves during college or grad school, he or she should be able to expect some basic employment benefits and rights, such as a living wage, cost-of-living increases, merit raises, health care coverage, paid sick and vacation days, relevant educational and training opportunities, the right to organize politically to advocate for their rights (such as by forming a union), and community respect for their work.

Until the day our workers do enjoy these rights and benefits, people with disabilities who employ and/or supervise them can, and should, do what we can to create the fairest possible working conditions now. We can begin enacting justice in an unjust world.

How do we do that?

We can start by acknowledging the profound disconnect between the importance of the work and the compensation it offers. In understanding and analyzing this, we can call upon a radical understanding of how disability justice and worker justice intersect. Providing hands-on personal care has acquired over the years an aura of sentimentality. People are assumed to do such work out of pure compassion (which translates as pity), or because "it's so rewarding" (rewarding in a vague, emotional, non-material sense). Within this framework, disabled people embody neediness, while support workers cheerfully fulfill our needs. Disabled people are passive objects of support workers' active "caregiving."

This construction of attendant work has a wide and deep hold on the consciousness of the public, and of many workers and clients. I can't count the number of job applicants who have told me that they wanted to be my attendants because they "love to help others." This response always troubles me because it would seem to premise my critical support services on a unilateral feeling, rather than on a mutually beneficial arrangement and mutually understood expectations. And I know people with disabilities who also participate in this drama of altruistic caregiver tending needy patient. Perhaps they do so because they hope for a guarantee that their needs can be met through emotional manipulation, in the absence of a stable workforce.

Don't get me wrong. I do not discount the reality of a feeling component in the interactions between disabled people and their support workers. Ideally, these include feelings of respect, and the kind of affection that grows among people who work together cooperatively and productively. I enjoy conversations with many of my attendants, and I care about their well-being. But to base the entire arrangement on emotional "rewards" is misleading and dangerous, because it ignores the need for economic justice for workers, who can't pay their rent with gratitude. And gratitude itself can be destructive, if too excessively wanted or given, because it creates a power imbalance. If personal assistance is a favor, then a provider can give it or withhold it according to whim; and giving it earns no particular claim of recompense. These traditional, still prevalent notions of "caregiving" deny justice to both disabled people and support workers.

Based on this radical understanding and commitment to justice, we can actively counteract the oppressive model of personal assistance as an act of kindness rendered to the less fortunate. We can replace that model with a more just model, in which workers with a particular skill set and interest – perhaps an interest in "helping" to maximize independence and efficacy for people with disabilities, or perhaps just an interest in doing practical and useful work – provide a necessary and valuable service, and the recipients of that service provide valuable rewards in return. In this framework, the role of the recipient and the role of the worker are distinct, well-defined, equally valued, equally empowered, and non-oppressive.

I urge all of us – disabled people and the home care workers who work for us – to advocate systemically for our own and each other' overlapping interests. Join advisory committees for state Medicaid home and community based services programs. Serve on boards of directors of nonprofit agencies providing home care services. Help develop, expand, and strengthen consumer-directed attendant programs. Get involved in budgeting and rate-setting discussions in state legislatures. Campaign for progressive ballot issues and candidates. Organize rallies demanding improvements in home care services and working conditions.

As we work to bring about systemic change, we can also implement a vision of justice, day to day. Rather than focusing on the relative political powerlessness of people with disabilities, I choose to discuss how we can proactively position ourselves as active agents, making decisions and taking actions that improve working conditions for our attendants, in large and small ways.

Below are some ways I try to create a positive employment environment for my own attendants. I offer these strategies to other justice-minded disabled home care users.

Respect attendants' professional abilities, and utilize them appropriately. Some client supervisors, or their families, assign their home care workers to fulfill roles that they never signed up for. Several home care workers have told me about other jobs where they seemed to be expected to babysit adults, provide emotional support, be a friend or confidant, or substitute for a real social life. Some attendants will try hard to fit the bill, but in the long run such confusing demands can become very difficult.

Make expectations clear. This is obviously good for the disabled employer, because it enables us to explain and get the services we want. But doing so is also very important for the morale of home care workers. If workers don't know what they are expected to do with their time, they will have the stress of worrying that they are not doing what they should be doing.

Treat workers equitably. Don't let one attendant slack off frequently on cleaning the kitchen, leaving messes for the attendant working the following shift. Also, implement the same policies across-the-board regarding tardiness and absences; consequences for last-minute cancellations should be the same for everyone on staff.

If you have any control over wages (as we do in Colorado's consumer-directed program), ensure equity there too. That doesn't necessarily mean the same rate for everyone. It may be reasonable to pay differential rates for early mornings, late nights, weekends, shifts that involve much harder work such as multiple transfers, and so on. It's also appropriate to give regular raises based on seniority and merit. But make these consistent, based on fairness and not favoritism.

© 2010 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