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Bob's Brother

When Bob was growing up in the 1950s, he had a lot of fights defending his older brother, who was, in the parlance of the day, mentally retarded.

Packs of scrawny boys walking home from school would yell out "Retard!" at this hulk of a young man playing happily in his front yard with children who were three and four years old. Bob would storm out of the front door and chase the hapless bullies away, usually catching one or two and giving them a good pummeling.

Forty years later, Bob's own children are grown and out the door, and still he's defending his brother, who now lives with his family because their invalid mother can no longer take care of him. Only now it's not stupid adolescent boys he's fighting, but a lack of adequate community support services for persons with serious mental and physical disabilities, as well as the sheer fatigue that comes from tending to the everyday needs of someone who is unable to live independently.

"I worry about him," Bob confided to me recently. "Who would look after him if I weren't around?"

Long-term caregivers know what it's like: the endless struggles, frustrations and adjustments; the occasional feelings of sadness, guilt, anger and even hopelessness; and the measure of satisfaction, empathy and even grace that can come from helping another who truly needs and depends on you.

We tend to forget this in our endless chatter about reforming the health care system. Caregivers like Bob aren't consumers looking for a "branding" experience and "making a market." They're not pining for government handouts, private insurance schemes and endless phone menus. They're not breathlessly awaiting another politician's health care plan.

Long-term caregivers want the same things that the people they care for - and all of us - need: love, support, encouragement, respect and forgiveness. What they often get, unfortunately, is a health care system that classifies everything as an "encounter," puts a meter on it and reduces it to an accounting abstraction.

In the dominant market model, those who are physically and mentally disabled are expensive, inefficient and decidedly long-term. They are not at the top of the list of people most health plans and providers want to sign up.

Unless they are connected somehow to resources or qualified to receive help through targeted public programs, the disabled are usually dependent on an informal network of family, friends and all-too-few specialized nonprofit service organizations for the help they need to live up to their intellectual and physical capacity, which is often greater than many realize.

Bob and millions like him willingly provide this help, but at a physical, financial and emotional cost that would tax the resources and patience of even the most resilient among us.

In Bob's case, at least his 55-year-old brother can clothe and feed himself, attend a day program for persons with intellectual disabilities and enjoy watching TV in the evening. Others are faced with carrying their loved ones up and down stairs, feeding and bathing them, and figuring out how to provide the stimulation they need to engage the limited capacities they still possess.

Then there are the severely disabled who are without either family, friends or resources. For some, death would be a blessing.

There but for the grace of God go all of us. The presence of the severely disabled forces us to face not only the illusion of control that glosses over the tenuousness and fragility of our lives, but also the essence of our humanity and the sympathetic connections with each other that sustain it. Caring for those unable to care for themselves is not simply the right thing to do. It is what we have to do in order to be human at all.

I've thought about this a lot over the years. I was one of those boys who used to walk by Bob's house on the way home from school.