The Value of Human Being, Pt. 1

One of the major things I have worked to accomplish in my book is to make clear that people with impairments, aka “disabilities,” are as worthy as people without them. (However, the point has been made that there are no people without impairments; some are just less visible, more subtle, less of a hindrance, or carry less stigma than others. A related point is that at various times in our lives, such as when we are injured or chronically ill or senescent, we are all disabled in some way, at least temporarily, unless we lived a freakishly charmed life and die young.) Those commonly characterized as disabled include people whose appearance, physical capabilities, mental functioning, or behavior is viewed as categorically atypical. Despite the overarching emphasis various cultures place on labor and economic productivity, even those who don’t “produce” anything tangible contribute to society. They are valued (hopefully) at least by their families and caregivers, and they can enrich others with their friendship. They demonstrate that difference is not grounds for dismissal, and that it’s a matter of degree rather than merit. Most people can offer relationship, companionship, and a sense of acceptance and belonging, and this includes people with impairments. But because all too often (generalizing here) we devalue them and shut them out, we seldom give them a chance to reciprocate. If we take the time to really get to know someone with impairments, we’re likely to see that we share the same desires, feelings, and dreams. These relationships offer a broader understanding of human connectivity and human being.

That’s not to say that every person with impairments is necessarily pleasant, either at all times or at all. (The same is true in any social grouping.) But many who aren’t would be more pleasant if they were more valued—seen, respected, cared about, loved. Too many people in this population feel alienated because they aren’t seen, respected, cared about, or loved. They notice when they’re on the receiving end of slights, exclusion, or downright cruelty. It rightly upsets them. And it assails their own identities. We’ve recognized for over a century that our ideas of who we are and what we’re like are shaped by the ways others view and treat us. It’s an atrocious thing to do to someone, even if unwittingly, to deprive them of a sense of themselves as an acceptable member of society. The conviction that others view them as lacking even the baseline status we typically expect to receive from others, causes a number of problems, both for that person and for those around them.

We should never relegate anyone to the shitheap of human refuse. And that all too often happens to people with severe impairments.

The lack of status and low wages assigned to people who work as caregivers are an outgrowth of how little we as a society value people with impairments. Caring for members of this population, if done compassionately and well, is a noble and at times very challenging occupation. To be done well, the job of caregiver to someone with severe impairments requires imagination, nimble problem-solving skills, physical as well as mental strength and endurance, and a high degree of compassion and empathy. And yet, because we assign so little in terms of wages and respect to these workers, people who are unsuited to such work are often the only candidates for the jobs, which typically pay less than stocking groceries or bussing tables. Good caregivers should be highly regarded and adequately rewarded.

The book I’ve written reflects the deep and rich humanity of one person with severe traumatic brain injury: my brother Dan. Readers are invited to walk a mile, or forty-plus years, in his shoes. Like others in similar situations, my brother is a multifaceted, fully human being. He merits a full measure of dignity, respect, acceptance, belonging, and love. My book is an effort to better enable people—family members, professional care providers, and medical personnel as well as relative strangers—to grasp what may be hidden beneath atypical physical or mental presence or behavior. Ultimately, to help them connect. 

Above all, that’s why I want my book published. My aim is to increase connections, and only understanding forges the links.