Designs for Becoming Something More

So what’s disability, anyway? My wife is blind, but there are many areas of her life where that really doesn’t matter much, and many others where it is merely a matter of her doing things a bit differently than many people might find “normal.” A fair bit of what limits her are the ways in which others treat her, many of whom are uncomfortable or don’t know how to act around someone with a disability. That discomfort, I believe, often results from uncertainty due to the fact that many people have never really had the experience of interacting with a blind person. That’s one of the costs of segregation – greater discomfort with difference. In contrast, I don’t have a disability “tag” myself, but there are a number of areas of my life that I function at levels that are (according to my wife’s standards) quite limited. Am I disabled? I don’t really think so. Do I have disabilities? I guess I feel more or less functionally “able” in different areas of my life, also depending on particular contexts and available supports, but isn’t that the case for everyone?

The truth is, society is designed in particular ways that typically “fit” for the majority, reflecting the needs and interests of the dominant culture. We’ve all heard how history is written by the victors, but not everyone is always cognizant of the degree to which the present is created by those who hold power. To be clear, when I say “power,” I’m not talking about evil genius master planners sitting in mahogany chairs and smoking cigars while plotting world domination (though there may be some of that I’m not privy to). I’m talking about the negotiated processes by which decisions are made to design buildings and procedures in certain ways, and by which patterns of interaction emerge between people in different contexts. We are constantly shaped by and shaping our cultures and subcultures through negotiated processes, and power is really about the degree of influence that various perspectives have in those processes. Individuals who are labelled as having disabilities are simply those who don’t fit in the “boxes” we’ve created due to mismatches between their particular traits and societal design choices.

It’s important to note that marginalization of people is not always so drastic as to warrant disability status; it can simply be disadvantage resulting from less than optimal matching (i.e. operating on the fringes of the “box”). What’s more, mismatches don’t just occur on the basis of what might be typically labelled as disability. Mismatches also occur due to racial and cultural differences, socioeconomic differences, and really along all of the many lines about which difference takes form.

Of course, not all life domains are of equal significance with respect to life outcomes. I suspect anyone reading this, however, would agree that the domain of school is one in which it is particularly important that we pay attention to marginalization. Schools help cultivate our future citizens and (should) provide significant avenues of opportunity for all kids to grow and pursue desired life outcomes. A kid who is marginalized in school will likely be marginalized in life. And, unfortunately, in America, we have entire sub-groups of children who are systematically located near the edge of society’s school “box” as indicated by the various measures we’ve adopted to gauge performance. It isn’t surprising then that students within these sub-groups are disproportionately squeezed out and labelled with the tag, “disabled.”

Think about your own life. I bet there are certain domains where, relative to your peers, you feel you have a better or worse match with the domain’s functional demands. If you don’t, then go challenge yourself by trying a bunch of new things and see if some are more or less comfortable for you. Keep in mind that adults have some choice over their life domains, so many may choose to remain in the realm of comfortable “good fits” and simply avoid those that pose more of a struggle. Also keep in mind that kids don’t have those choices – school is compulsory. For the marginalized child, school might not be a particularly pleasant or developmentally lucrative experience.

So, a good fit makes life easier for us and a poor fit makes performance more difficult. Such is life, right? That’s just the way it is. Maybe sometimes, but often it is so ingrained in us that things are “supposed to be” a certain way that we are blinded to potential alternative design choices. For instance, many citizens may have certain conceptions of how school is supposed to be structured, and it may even seem normal or appropriate (well, maybe not among this crowd) to segregate students labelled as having disabilities away from their peers. These artificial mental boundaries help perpetuate the status quo, with significant negative implications for those who are marginalized by current structures.

When one recognizes disability as a mismatch instead of an innate human deficiency, it becomes clear that the solution lies in creating a more flexible, inclusive societal box in which all people are able to fully express potential. Therein lies the difficulty, however, as historically the American public school system has not been amenable to substantive change, and has particularly struggled with issues of equity. And while I see schools as a potentially meaningful driver of societal change toward greater inclusivity, this is challenged by a society that largely self-segregates on the basis of socioeconomic and racial status, and that values individualism and competition over unity and collaboration. Indeed, I commend all of the SWIFT Center partner schools for engaging in the difficult but worthy work of inclusive school reform, as well as all members of the SWIFT community who support the effort in a wide variety of ways.

As we move forward as a nation, we need to recognize that diversity will continue to increase, and without substantive change in the structure and culture of schools towards greater inclusivity, we will see more and more kids fail to live up to anything close to their potentials. We must understand that we make people more or less disabled by our design choices, and for kids in school, the results of this disablement compounds from year to year. We see this manifested in large achievement gaps, differential dropout rates, college completion, economic disparity, and a variety of indicators that generally point to less than desirable life trajectories for some groups of kids.

I’m not suggesting that schools bear responsibility for all societal inequities, and I recognize that schools likely aren’t able to fix everything that is ill in this world, but they don’t have to adopt all that is ill with it either. I believe in a vision of schools as inclusive communities that care about and support all members in growing to potential. This vision of schools shifts from the current systemic focus on competition, performance, stratification, and acquiring, to instead emphasize and value the ethics of collaboration, mastery, unity, and becoming.

– Newton Piper

Photo of blog author.I am an appreciative traveler engaged in the journey of life. Currently, that has me at the University of Kansas pursuing a Ph.D. in Special Education while also supporting the excellent and important work of the SWIFT Center (