In my last post, A Worthy Life, I wrote about my desire to write my sister Vickie’s story — of her long life from a wheelchair.
As soon as I uploaded to my blog, several questions began to swirl in my head.
- Who has the right to tell our stories?
- Do I have the right to tell her story?
- In telling her story, am I really only telling mine?
- If she were able, would she agree with my rendition of her life?
- Do I need to seek permission to tell her story?
Truth-telling and Stories.
Everyone tells a story from their own place – through the experiences that shaped how they interpret the events in their life and how those events contribute to how they view themselves.
This gets complicated because we’ve been conditioned to think there’s one correct version of a story.
This is often confused with the abstract idea we call ‘truth’. The word ‘truth’ used here does not refer to the concept of Ultimate Truth or Ultimate Reality. Yet it’s uncomfortable when someone says, “my truth” is different than “your truth.”
If we spend time investigating the matter, we’re convinced we will be able to tease out the truth every time. But that just isn’t so.
It is audacious on our part to claim that we humans – with our limited view of reality and time – are able to determine the scope and significance of a person’s life from the particulars.
This continues to be a challenging notion to contend with – especially when discussing why and how and who should be held accountable when bad things happen to people.
With that in mind, I realize my story is told from my vantage point as a second-born daughter with an older sister with a condition that the medical profession classifies as cerebral palsy. My perception of Vickie’s condition, and how I experienced and perceived her day to day lived reality, will naturally differ from those of my three younger siblings.
Although I will attempt to recall how my childhood-mind interpreted the events at the time I experienced them, I acknowledge here and now that I am now looking back in time with a matured knowledge and admit I interpret and reinterpret from that vantage point.
Another thing I discovered when looking into the study of disability is that words matter. What words are appropriate for me to use in order to convey her physical, emotional, intellectual, and spiritual conditions to an audience of readers who have never met her?
When we were children, the words were used to describe those with “disabilities” or those who were “different” were downright crude, insensitive and degrading words. These were shaming words, painful words, exclusionary words. We were taught then to ignore those words. But better words, words that were respectful, did not come into our vocabulary until many years later.
This takes time. I’m committed to reading the literature around this topic to learn which words are appropriate to use and which are problematic, and to understand why.
Terminology and Definitions Matter.
What terms and definitions are we using when working out a theology of disability? Are these appropriate terms? Or are they as crude as those from decades past or more compassionate and respectful?
How might the disabled person define these terms? Would their understanding mesh with mine? How might the disabled one view themselves in light of God or the divine? Will it differ from my view of them in light of God’s work?
Who is Disabled?
Most important in my mind are the following questions.
Who is the disabled person?
Are there degrees, categories, and sub-categories of disability?
Do we study the disabled one as an object, like the indifferent scientist who is observing, measuring, calculating an item?
Or do we study the person instead, as a companion – engaging, conversing, sharing – in order to seek ways of understanding each other?
Vickie’s and my stories are interconnected, that is a given. But her ways of processing life and my ways are miles apart. To be honest, then, this is my story, in which her story, her presence, is now, and was then, a gift. I didn’t realize the immensity nor the theological significance of disability at the time. I understood only as a child.
It has taken a long while to come to terms with that and I’m yet working that out. Maybe telling my story, her story, will reveal more about each other than we ever expected.