Of or Pertaining to Always with Disability

No one knows that disability is not any of the things we say about it. Not even the critical disability studies scholars (who believe in narrative’s capacity to affirm and deconstruct social realties) fully understand what occurs inside human beings. Last night, speaking to a group of Muslim students about the Persian poet Rumi I talked about the hidden powers of love that are inside us and can be apprehended in others when we are awake. I spoke about Islam as a faith of spiritual wakefulness to love. Why am I writing of disability in this context? Each disabled being is unique and cannot be known to herself or others without the power of love. I am “on” about this today but it’s in all my written work. Love is from the time of inner voyages. It’s from the shaman’s age. It’s knowing the shadows on the walls in the dark. It’s not a set of protocols. It is never written in rehabilitation plans or accommodation requests. Love isn’t included in the airline’s policy toward disabled passengers. You won’t find it in the legislatures. But you also won’t find it much in the field of disability studies. Why should this be so?

In the Journal of Religion, Disability and Health (which has recently changed its name to the Journal of Religion and Disability) there’s an interesting article by Hans Reinders entitled: “Is There Meaning in Disability or Is It the Wrong Question?” Reinders astutely points out the conventional Christian response to disability which tends to frame the disabled body as either a tragedy or (often worse) a special “gift” from God. What’s missing Reinders points out is conventional religion seeks to frame disability as pejoratively remarkable rather than normal—a matter which in turn means that questions about the dailiness of embodiment are often skirted or overlooked. In turn this means that conventional Christianity can’t address the experiences of not only the larges minority group in the world, but a population that will include everyone in time. 

Religion often panders to the remarkable in lieu of the experiences before us. Reinders describes in turn “philosophical naturalism”—the refusal to ascribe meanings to matters we can’t predict or avoid. Just as there’s no meaning in a flat tire, there’s none for a disabled child. This is an easy position to adopt but positivism often misses the mark with human beings precisely because we’re symbol making animals and purpose is important when reflecting on the nature of life. 

But how little love is mentioned. It is the flame that came through your window this morning as you opened your eyes. It is the flame also inside you. You cannot describe this. Or not easily. How does one say something nearly ineffable about love—“a beam of love passed through me like an invisible star as I walked home with the groceries.” Yet this is the most important area of divinity—the shy, unanticipated, all too often unsung moments when we know we are loved and there appears to be no one else around. Or there is, a stranger, who happened to point you on the right path. 

Since love is always you now sense the import of my title. Love. Embodiment. Strangeness. Always. 


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Author: skuusisto

Poet, Essayist, Blogger, Journalist, Memoirist, Disability Rights Advocate, Public Speaker, Professor, Syracuse University

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