Most days the bike ride home from work fills me with joy. I am at ease on the open streets, appreciating life around me, thankful for the city roadblocks that limit car access and encourage communication with other passersby.
One fine autumn day I was riding home in the golden hour before sunset singing Tower of Power. I passed the regular neighborhood softball game, then a mom towing a tot in a bike trailer with their dog running alongside. A few blocks later I saw a person in a wheelchair pulling a skateboarder skitching behind and smiled to think: This is home.
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I work as an in-home caregiver and attendant, helping a few quadriplegic guys with their lunch, dinner, or nighttime routines. Each of the guys is paralyzed as a result of a traumatic accident that resulted in a spinal cord injury and each depends on a number of attendants to move from bed, shower, do housework and run errands, prepare for sleep, and so forth.
Truthfully, I kind of just slipped into becoming an attendant. I needed paid work and it seemed like one of the few options that felt important, allowed me to be myself, and offered dignity and fulfillment. It turned out a bunch of folks in the area were in need of attendants and I was soon officially employed, beginning to learn about their lifestyles and beginning to form intimate, cherished friendships.
Before that I had, so far as I knew, relatively infrequent contact with disabled folks. Growing up in Richmond, Virginia, it was rare for me to see or interact with people in wheelchairs, excepting visits with my grandmother who had multiple sclerosis. Later, living in the suburbs south of San Francisco, I was asked to help a classmate with spina bifida. He used a walker and could not speak, and was the only person with noticeable bodily challenges I have ever shared a public classroom with. People with invisible disabilities like those with psychological, emotional challenges or chronic pain or fatigue who do not use assistive devices or show outward signs of their challenges weren’t on my radar at all.
Here in Berkeley there is a significant population of folks who use wheelchairs, many of whom go out and about. One of my buddies calls Berkeley “Disneyland for a quad” because it has wheelchair-accessible sidewalks, busses and rapid transit. Libraries, banks, stores, and restaurants are often accommodating, he says. People here are accustomed to interacting with folks with disabilities and for the most part they don’t stare. I have heard, though, of theft in public and car drivers hit-and-running persons using wheelchairs. And months ago I saw a driver honk at a blind woman crossing the street.
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Each of the three guys I work for came here to attend UC Berkeley, which offered a program for disabled students unique in its time. The “dorm program” provided appropriate housing and on-call attendants as students transitioned into school life and hiring help themselves. Many who participated in this program ended up staying in Berkeley because of the disabled community, the city’s efforts toward accessibility, and the social climate here. From what I have been told, the opportunities available here for personal independence and community integration are unparalleled elsewhere.
The broader San Francisco Bay Area has been and continues to be one of the epicenters for the disability rights movement and radical actions led by disabled organizers. It is home to disability rights advocacy groups, disabled artists, performers, and activists. Berkeley was the first city to be home to an Independent Living movement and an Independent Living Center aimed at uniting different disabled groups to change social and structural ableisms.
Perhaps owing to this radical history, Berkeley was one of the first cities in the country to begin implementing federal legislations such as the Architectural Barriers Act and the Americans with Disabilities Act (ADA). These laws are meant to ensure that public spaces are designed to be accessible for those with disabilities and that disabled persons cannot be discriminated against in the field of education or the workplace.
The American Disabilities Act (ADA) defines disability as “a physical or mental impairment that substantially limits a major life activity, such as walking, seeing, hearing, learning, breathing, caring for oneself, or working” and is intended to protect “those who have a disability, those who have a record of such an impairment,” and those who are “regarded as having such an impairment.” This definition includes persons in very different positions with widely divergent lifestyles and needs. Persons who are blind or deaf, who have severe back injuries, cancer, or AIDS, who are former drug addicts, have learning disabilities, and those who were diagnosed with emotional or psychological conditions are all amongst those that the state recognizes as disabled. “Disability,” then, is defined by the state largely as one’s inability to work.
This condition is problematized in a growth-based capitalist paradigm as one’s value to the nation is quantified in purely economic terms. Government agencies and programs meant to support those who are not financially self-sufficient — physically disabled and otherwise — are commonly referred to as “entitlement programs” and are consistently under attack by those who would prioritize balancing the state budget over peoples’ health needs. The attitude that sees inability to work as a character insufficiency is of course not limited to government financiers; disability advocates have worked to show that disability is a socially created and maintained category.
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What are disabled persons’ lives like? How does it feel to be labeled “disabled,” how is one treated? How do individuals with state-designated disabilities feel about their relationships with their local communities or their relationships with the state? What is sexuality like for someone with paralysis? Romantic love?
As I began working as a caregiver, I realized that I was afraid to ask questions like these. I didn’t want to ask anything too personal, too sensitive, to overstep the bounds of my new relationships. At first I mostly observed, a beginner trying to absorb any information that would help provide care, comfort, and mindful presence.
Soon I was seeing how each person has carefully developed and designed individualized systems, engineering custom fabrications to maximize their autonomy and access to communication and technology. How a rhythm of routines is necessary to meet one’s basic needs, ensure efficiency and completeness, and maximize opportunities for other activities. I was seeing a highly refined sensitivity to one’s bodily needs and respect for ensuring that they be met. Complex ways of navigating health concerns, relationships with medical supplies, pharmaceutical medicines, and the medical industry. A life simultaneously lengthened and regulated by the state, a life in which anything necessary or desired must be asked for from a position of dependence.
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The paper Capitalism and Disability (Russell and Malhotra, 2002), which this article is much indebted to, researches and explains the history of how capitalist industrialization increasingly demanded a type of labor that disabled bodies are unfit for. This grew to result in the institutional incarceration of those bodies in many countries, including segregation in asylums, isolated group care facilities, work camps, prisons, and special schools. It also codified and enforced the involuntary sterilization of those who could not work and, at its most extreme, exterminated tens of thousands of persons in Nazi Germany.
Today disability continues to be a boundary category that divides those whose relationship with the government is based on need from those whose relationship is defined by their ability to work. Those disabled persons who would prefer to enter the workforce are excluded from doing so by a profit-centered logic: disabled employees cost more to accommodate and produce less in their individual work. They will by definition make a business less money than able-bodied counterparts who want the job.
Though the ADA mandates that employers provide assistance when necessary and do not discriminate against the disabled, data clearly shows that disabled persons seeking work have become increasingly unemployed compared to able-bodied persons seeking work. Those disabled persons who do work live in a form of state-maintained poverty because of regulations that limit the amount of paid work a person who receives disability benefits may perform while continuing to receive financial support and/or health insurance.
Some theorize that these structures and attitudes have created a fear of disability amongst able-bodied persons, a fear of one’s own inability to work and the social and material conditions of the lifestyle that would result. It cannot help this fear knowing that some entrepreneurs shape institutional care facilities and the public policies that determine who lives in them to house persons that might otherwise live in their own homes. Disabled bodies commodified in this way may be worth anywhere from $30,000 â€“ $82,000 each in guaranteed annual revenue and in such situations, “disabled people are worth more to the Gross Domestic Product when occupying a ‘bed’ than a home.”
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We all suffer when a person’s individual value is conflated with their capacity to produce labor for institutional interests. We all become judged — by authority figures, new acquaintances, friends, and ourselves — according to the perceived value of the labor we can do.
We all suffer as opportunities for life outside this norm are diminished. The world becomes less diverse and many are marginalized, oppressed, and eliminated. This is an issue that affects any person who does not serve such interests, disabled and otherwise, and more generally, it affects all earth beings.
This last insight is something I heard in a roundtable conversation with disabled activists who had created and performed in the show Sins Invalid. One said, “When will we all be honored for who we are, the fact that we are, and not what we can do?”
In extending this attitude toward nonhuman beings, she was voicing a principle for the beginnings of a maximally diverse and inclusive community. What would such a world look like? What about our relationships within it, to others, to our built environment, to technology, to health care? How would we continue to ensure that such a world would be available to all?
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The state of California currently pays for services that enable many quadriplegics – amongst others – to live in their own homes, employing folks like me through In-Home Supportive Services (IHSS), a division of Social Security. Without IHSS, quadriplegics would have to afford essential care themselves ($40,000 a year) or depend upon their families and communities to provide this support as well as access to health care and medical supplies.
In Alameda County there are more than a hundred fifty thousand disabled persons and but one IHSS office to serve them. All new IHSS workers must register here and watch a mandatory video on how to commit fraud and what the penalties for doing so will be. Each new worker proves that they have been fingerprinted, a state background check paid for by the individual hiring them. Felons, though they have in theory served their time in a “correctional” facility aimed to rehabilitate them, are de facto ineligible for this form of state work.
What is life like for quads living in places without state-provided support? According to one of the guys I work for, the vast majority of quads that live in such locales are at home with their families or in assisted living facilities. Many of them rarely – if ever – venture outside their homes as the built environment may be inaccessible for those who use wheelchairs. People help, though, and logistical challenges can be overcome with motivated assistance.
Go to the Alameda County IHSS office and you’ll encounter attitudes that show that workers are underpaid, underappreciated, and overworked; call and the time you wait on the phone reveals a severely understaffed agency. For many it is an impossibly long trip on public transit, accessible only by bus in East Oakland. Limited though these resources are, they provide a quality of life for severely disabled persons that is to my limited knowledge unavailable anywhere else.
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In opposition to the norm of productivism, there exists an opportunity for a positive project. We can value each other in ways that are not rooted in our suitability for a dominant and damaging paradigm of work. We can value each other in ways that affirm the magnificent diversity of this world for its wild difference, celebrating the richness of opportunity for relationship and experience that results.
In this spirit I would like to celebrate my relationships with the individual quadriplegics who have become intimate friends. I would like to celebrate the closeness of our friendships, the reciprocity of our relationships, the wisdom, support, and nurturing care each has given me. I would like to celebrate the beauty of their chosen lifestyles and the particular beauty of each as an individual, to be grateful for the ways in which I receive care from each of you.
Friends, you have helped me to listen to my body for real, to strive to identify and honor my own bodily needs. You show me that grown men can be unashamed to ask directly for the help we need, and with you I experience difference in repetition and beauty in necessity. You have helped me to mostly get over a streak of cranky fundamentalist ludditeism.
You have helped me to become more mindful of my relationship to our shared physical surroundings, more sensitive to my responsibility for the changes within it. You teach me to be grateful for our interdependence and grateful for the gifts we continue to receive. Friends, we are here together and our lives are richer in caring for one another.