We Are Who We Are: So Who Are We? Musings on the definition of disability culture

Saturday morning. The sun is shining. I sit contentedly in my living room chair fulfilling a volunteer commitment. Baking pleasantly in the warmth, and the light, I am energized. I finish the volunteer work; I complete some light reading; I retrieve my pile of disability culture notecards waiting to be organized and filed. I feel productive. I am contemplative. Before I can stop myself my brain is racing into an approach and definition of disability culture I think might be livable.

How many cultural definitions or characteristics might one find in the above paragraph? Sun-worshipper? Volunteer? Workaholic? Reader? Philosopher?

What would make any of the above words cultures? What would make me a member of such a culture?

It's been ten years since I first started mulling over the concept of disability culture. During the first five of those years I was a passionate, though sporadic, investigator of the concept. I facilitated and participated in some panels that discussed the subject. I began to promote the concept.

During the past five years I have moved from passionate investigator to an "acknowledged authority" (and to what cultures does that appellation belong?). I am writer, promoter, advocate, expert, co-founder of the second institution specifically about disability culture, teacher, student, poet, and so forth.

And yet when someone asks for a definition of disability culture I am hard-pressed to respond in a way that will make sense to both of us. I have never had a handy one sentence or paragraph explanation of the concept.

One reason for this is that the words themselves are full of controversy. "Disability" is defined differently in various parts of the world, by distinct cultures, by diverse outlooks on life. What once was a disability may no longer be, for example, certain visual needs which can be corrected with the use of glasses (and who hears the phrase spectacle-bound?).

The United Nations has spent more than ten years and who knows how many people hours attempting to define disability, handicap, and impairment for a classification system. The endeavor continues.

"Culture" is a word just as value-laden. There may be as many definitions as there are people working in the field of "cultural studies" (which did not exist several years ago). I am loosely defining that field, for the purpose of this essay, as anyone who chooses to pursue cultural issues.

When I began to write about disability culture I felt much more comfortable with my ability to define "disability" than "culture." So I started searching for definitions of culture. I quickly learned how many definitions and controversies about the word and its meanings existed. So I did as I was taught many years ago. I looked it up in the dictionary.

The 1973 Random House Unabridged Dictionary, which happens to be the one I use at work, defines culture as "the sum total of ways of living built up by a group of human beings and transmitted from one generation to another."

Shortly after copying this definition I came across another. I don't know its origin, but its definition is a "totality of socially transmitted behavior patterns, arts, beliefs, institutions, and all other products of human work and thought characteristic of a community or population."

I did find one other definition useful: one is a part of a culture if they think they are. I did not note the source of this definition--it seemed too simple, I guess. But the phrase, or a variation of it, shows up frequently, including in my own writing.

The problem with these definitions is the same obstacle that is the problem with any definition that is not commonly accepted--they generate controversy. So, as I sat radiating in the sun this morning, I started thinking about the definition and my inability in developing an argument defining disability culture that gave me comfort.

I seemed to have hit upon some clues. Let's see.

What, I wondered for the first time, if I analyzed similarities that the various definitions of culture seemed to share? An appallingly simple answer resulted: Each definition of culture is trying to place the concept in some sort of context. Either one is a part of a culture because one fits the context or one is not for the same reason.

What then is the reason for such emphatic need to develop context and ensure its integrity? Henry Adams wrote more than a century ago, "order is the dream of man, chaos is the law of the universe." Context is order. If we can figure out to which culture, or context, we belong, then we can put the rest of humanity in order, that is in context, either as a member or an outcast of our culture, our context.

As any activist in any social, political, cultural or other movement can verify, belonging is about naming, claiming, and proclaiming. We all do this all the time. I claim, for example, to have a disability, to be a writer, to be a husband, and to be a father. Naming these identities is the same as making a claim to them.

When I claim to be a writer I also proclaim myself a member of a group of people who write. Others may write who do not make such a proclamation. Are they not writers? Indeed, they are. But they choose not to claim to be a member of the group.

Meaning they refuse, for whatever reason, to put themselves into the context, the order of the group of writers.

If I find out you are a writer who does not choose to proclaim yourself by that label I can either choose to accept you as you are or try to change you. In either case I am making a choice to put you into an order, a context. Who am I to do this to you?

Exactly.

The debate about definitions is not a debate primarily about the literal meaning of a word. It's a debate about power.

Who has the power to create and apply definitions? In this specific case, who has the power to create and apply definitions of culture? For the most part, the people who have claimed and proclaimed that power have been academicians in the fields of anthropology, psychology, history, sociology, and other so-called social sciences.

There may be all sorts of reasons for this act of power. People who are formulating definitions may believe that they have the most knowledge about the concept and therefore the most right to implement their own beliefs. They may just as easily believe that they have spent many years of their life acquiring this knowledge and because of it the position to formulate definitions. They may also believe that others who have not experienced their long quest for knowledge and position have little right to question their judgment. Or they could just as easily fear that when someone questions their judgment they will lose their power.

In any case, the motivation for claiming expertise is power. The power to name, the power to define, the power to proclaim, the power to place people into a context, an order which fits the vision of the person doing the naming, claiming, and proclaiming.

Many people who have had the power to define culture have chosen to state in one variation or another that you cannot be a part of a culture because you think you are. Why not? Who makes this rule?

If I choose to say I am a member of the disability culture who is anyone else to oppose this proclamation? A doctor, social worker, psychologist, politician, and so forth who say I do not have a disability? Who are they to make this judgment? Do I have a disability if I think I do? Who is the expert, the person in power, who can argue I do not have this right?

If I choose to state I am a member of the disability culture who is anyone else to oppose this claim? An anthropologist, sociologist, psychologist, historian, and so forth who says I have no culture to which to belong? Who are they to make this judgment? Do I have a culture if I think I do? Who is the expert, the person in power, who can argue I do not have this right?

If I do not give them the power no one has these rights. If I do give them the power, then everyone has those rights.

This makes the debate, the controversy over definition a fight over who has the power of naming, claiming, and proclaiming a disability culture. I believe I have this right for myself. I am unwilling to give it to anyone else. I have the power.

Of course, the entire preceding debate is moot. Because while we may argue about its existence or characteristics the culture itself goes on with or without us.

Art is burgeoning. Writing is increasing. Teaching is taking place. Children are learning about their history. Values are being explored. Music is being composed. Humor is generating laughter. Members of the culture are being born and dying. Life goes on.

The debate itself, while perhaps irrelevant, goes on as well. And because I am a part of that debate, I offer a definition of disability culture as follows:

People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives, our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity. We are who we are: we are people with disabilities.

You now have the choice to accept, reject, or refine this definition. The power is yours - if you take it.