We are convinced that “disability” is not a matter of something being “wrong” with the body and mind of a person we would label as “disabled.” But, all the same, it’s misleading to think that “everybody is disabled” in one way or another. Differences are real – but “disability” comes from “barriers” that are constructed and remain intact. These barriers are established and then (mis)used to “label” those who cannot overcome them as being “different” or deficient – as “handicapped” (or worse).
Those who are so “marked” almost inevitably experience “marginality.” Our world becomes one in which there are the “normal” people… and then there are “those others.” Those “special cases,” to which normal rules of order don’t apply. We actually use the persistent existence and presence of barriers to allow this “normalizing” of ourselves to remain unchecked and unchallenged.
You see, when we see disability as something to be “treated” (typically by “specialists”), we introduce a whole raft of problems. I’m not saying that medical professionals aren’t a valuable and needed part of the community… they certainly ARE – and we’re personally committed to helping such specialists find their place in the global mission of the church. But what if we could re-vision “disability” so that what is normalized isn’t an ideal of “ableness,” but virtues like access, mutual support and interdependence. Who among us – honestly – can get along in any neighborhood without at least occasional help and support from friends and volunteers? If we saw “access for all” to be “normal,” society at large would be oriented to see people with disabilities as equal members of families and communities, instead of undue burdens.
However, as people with disabilities know all too well, their relegation to “the margin” – their being construed as “special” in a way which requires “special treatment” – represents a seemingly permanent and unresolvable fracture of and alienation from what could and should be – for them – “normal” life, “normal” interaction with one’s community and environment.
When a friend of ours in Eastern Europe gave birth to a special-needs baby she was brusquely informed, “You know, there are places for babies like that.” Of course, he meant “institutions,” often more like warehouses or prisons than care-facilities, built on the conviction that “disability” is a “problem” that is best (even only) understood medically. This institutionalizes the marginalizing of people with disabilities. They are not only packed away in institutions, but the medical model justifying such treatment becomes, in its own way, a social “institution.”
In a grotesque perversion of “normal life,” people with disabilities, because of their marginal status, are not getting chosen as friends. So, the state responds by paying people to be in their lives in a variety of capacities.
Instead of creating opportunities for normalcy by working from a social model that empowers families and people with disabilities, we push people out of the mainstream and into a “system” which forces massive expenditures on treatments that the “medical model” deems appropriate for someone with “their condition.”
It is certainly within the realm of possibility that we could, together, as a society provide all the assistance needed for every citizen to live a “real life” in the community – but it will be difficult to impossible to realize such opportunities as along as we remain locked-in to the “medical model.”
I’m not bashing health care professionals – we love them! But how different might it be to see nurses and caregivers as part of a support community, coalescing around people with disabilities, that prioritizes care and caring over profit and material progress.
However, today very many of our fellow-citizens with disabilities are “marked” by their “difference.” While each of us are “different,” only some of us have differences that stigmatize us, that make us qualitatively “other.” This locates people in a different social space – the fringe, the margin. These barriers of attitude and economy, of structure and power – which “we the normal” have constructed, cementing them with “normalization” of ourselves and our own horizons of ability – not only push people with disabilities to the margin… they serve to keep them there – to keep them away. They would not be more effective if they were made of concrete and steel.
That’s what happens when we allow certain forms of difference to “mark off” people as “them” instead of us. Some people – those who really prefer a life populated entirely with people more or less like them, those who are distinctly uncomfortable with difference, or at least certain forms of difference – actually are more comfortable with such a set-up.
For myself, as a follower of Jesus, it’s not and cannot be like that. Because, in any way I can possibly turn the picture, when there IS a “margin,” a place where people are excluded and devalued – marked off and marked down – the presence of Jesus is manifested in a unique way. So, that’s where I want to be.