Laura Hershey's Whenever Web Column

Column from November 15, 2001

Caregiver Advocates Miss the Point

Copyright 2001 by Laura Hershey

November is National Family Caregivers' Month. This designation is part of a growing movement in the U.S. "to honor, thank, support, assist, educate, and celebrate our nation's more than 54 million family caregivers."

All this thanking, supporting, celebrating, etc. sounds nice enough. But what does the "caregivers' movement" have to say about the people receiving the care? Very little, it turns out.

The Month's organizers remind us, "Providing care to a loved one who is ill, disabled or elderly is a devastatingly difficult job."

Yes, it can be. But why? These caregiver advocates focus entirely on their own needs and issues, to the exclusion of the bigger disability issues like accessible housing and transportation, in-home attendant services, and independent living programs. They fail to analyze the effects of disability oppression. Thereby, they implicitly put the blame on disabled and older people. This leads to all kinds of problems -- burnout, neglect, abuse, and imprisonment of disabled and older people in nursing homes.

I sincerely appreciate the people -- both family members, and paid employees -- who assist me every day in meeting my personal and health needs. And I'm all for empowering those who provide assistance to disabled and older people. But I honestly believe that the best way to do this is to empower the disabled and older people themselves. As long as our society continues to keep the majority of disabled people in poverty, then care providers will share that poverty. As long as society offers disabled people only inadequate, inappropriate, even discriminatory services -- or no services at all -- then family care providers will be forced to fill the gaping holes in the social safety net. As long as personal assistance is viewed as a family burden and duty, rather than a civil right which should be guaranteed by society, then disabled people and their care providers will both find themselves in "devastatingly difficult" circumstances. To honor family caregivers, without analyzing the conditions which impoverish and disempower disabled people, leaves unchallenged such fundamental injustices as disability discrimination and institutionalization.

The National Family Caregivers' Association is the group promoting this special month-long campaign to "raise awareness [about] the caregivers' vital role" and "to build caregiver self-esteem, expand caregiver self-awareness and teach caregivers to become their own advocates." These goals sound laudable, but further exploration of the Association's website reveals some of the biases which disturb me.

In honor of National Family Caregivers' Month, caregivers are encouraged to tell their own stories, and to collect the stories of other caregivers, in order to advance this "awareness" campaign. In the storytelling materials, including a questionnaire and two examples, caregivers claim control over the stories of disabled and older people. On the "caregiver's story" form appears this question: "Describe the amount of help and services you receive from others." The family member is here regarded as both the caregiver and the consumer of services, rendering the disabled or older person invisible.

Other questions asked of caregivers include "What would make caregiving more manageable for you?" "What assistance would make it easier for you to provide care?" "What could government do to help you? " "What is your greatest need?" Again, the focus is entirely on the caregiver's agenda, not on the disabled person's.

Furthermore, the caregiver is regarded as the sole owner of the family's story. The disabled or older person is stripped of any control over his or her own story. The caregiver is the one who is asked to tell the story, and the caregiver is and also asked for permission to make the story public. "I am willing to speak to newspaper or magazine reporters about my story.... I am willing to speak to broadcast media representatives about my story.... I am willing to have television cameras in my home as I talk about my story." These choices are offered to the caregivers. Presumably, elderly or disabled relatives are not asked whether they mind being filmed while their caregivers describe them as terrible burdens.

Throughout the National Family Caregivers' Association website, there's a tendency to use very negative, even dehumanizing language in describing people with disabilities who need "care." In one sample story, a caregiver named "Betty" discusses her husband "John," who has multiple sclerosis. She describes him, not as a man, but as "a 6'5", 240 pound dead weight." She laments, "Our only socializing is with other disabled couples because wheelchairs, trembling, infirmities and system failures make former friends and even family uncomfortable." It sounds to me as though Betty herself is uncomfortable with John's disability; and she seems to suggest that associating with other disabled people is a compromise, a step down. Why? Disabled people are capable of loyal, reciprocal friendship. Personally, I revel in my friendships with other disabled people.

Betty goes on: "I miss the hugs, the snuggling, the hand holding, the love making, the dancing, and the strong shoulder to lean on." It is not clear why Betty and John can no longer make love, snuggle, or even hold hands. People with significant disabilities can certainly engage in physical affection. And (with a little creativity and adaptation) we can have sex. The lack of closeness cannot be explained by John's MS. The real problem is the fact that Betty is his "sole caregiver." Her relationship with him is overwhelmed by that role. It is the situation, not John's disability, which can also explain Betty's "depression, loneliness, hopelessness, and fear." If John's disability did not result in his being a second-class citizen -- in other words, if he had reliable, consumer-managed attendant services, access to assistive technology, and opportunities for social integration -- John would no longer have to depend exclusively on Betty. They could then become more equal partners, and maybe even lovers.

In another example, a person's condition is described this way: "Cerebral Palsy and cannot function independently." I know many people who have CP, and have significant physical limitations. Some even have cognitive impairments. They need assistance, but that is not the same as "not function[ing] independently." As the disability-rights movement has demonstrated, independence means having choices and rights and responsibilities -- not doing everything unassisted. No one is completely self-sufficient. We all depend on each other to fulfill various needs -- for food, energy, services, and support.

If we as a society could acknowledge that interdependence, and recognize the diversity of human needs, then disabled people might be more supportive and less stigmatized. High-quality, consumer-directed, in-home attendant programs would guarantee that all older and disabled people are fully supported in living independent lives. Then disabled and older people would have choices about where and how to live, and how and by whom their personal assistance is provided. Family members would be freed to provide none of the person's "care," or some, or -- if the disabled person chooses -- most. All family members would then be able to see us -- just as my family sees me -- as independent adults, worthy of equality and respect.

Click here to visit the website for National Family Caregivers' Month.

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