Disability And The Defended Self

This post is part of a series that starts here.

Not that long ago, I read an article on The Mighty that drew from two polarized understandings of disability. The first was the medical model of disability -- "that when something is wrong with the body or mind it is an impairment or pathology, therefore, it is not functional, the ideal state is non-disabled, and an outside force should help work to 'fix' or cure the 'broken' state of the disabled person." In a sense, this becomes a highly individualized diagnosis leading to bias prejudice, labels, and often exclusionary isolation from society (Ableism). The second is what it calls the social model of disability -- "that yes, impairments in the body and mind do occur but that disability occurs because of the external disadvantages society creates in the management or handling of a person’s impairments through attitudes, systems, structures, and beliefs."

What I often think is that we create a sort of pendulum structure between these two spheres; swaying back and forth while weighing the measures of truth between the two understandings. Do they both present certain truths? Yes, I think they do. And rather then swinging between the two while trying to articulate one singular truth for all, I would prefer to perhaps converge them into a relational entanglement of shared authentic experience and vulnerable openness.

Whether it is within our individual selves or the social framework, Betty Pries calls the struggles of these two spheres our Defended Self or our False Selves:

"It is the defended self that lies at the root of racism, sexism, and every other prejudice. When a hierarchy of characteristics is established at the societal level, systemic prejudice emerges and, over time, becomes cemented in place. Now the characteristics that are considered “good” and “not good” are so unconscious as to be unnoticeable to all but those who pay close attention."

Pries, Betty. The Space Between Us (p. 88). MennoMedia. Kindle Edition.

I had a conversation with a friend a bit ago who shared that she has, "a grandson with autism." She goes on to explain, "There is a lady I know here who has a daughter with Down’s and she has adopted a girl with profound disabilities. She fights very hard for equality and with her passion for justice her daughter has achieved so much. When I mentioned I had an autistic grandson she angrily said I should never say that but rather I have a grandchild with autism. Most of my dealings with her and with help for William, my grandson, have driven home to me that it was wrong to think of their disabilities, but instead to think of their abilities."

I think the truth is we cannot truly find our unique authentic descriptive selves without being willing to deconstruct and strip down our defended selves at the same time. This means being willing to both acknowledge our described disabilities and our unique abilities while not placing blame either on the failures and biases of the medical model (Individual relationship to disability) and the social model (systemic environments & structures). As Pries illustrates her own acknowledgement of this:

"As an individual I am the bearer of a particular set of characteristics, but I also belong to multiple identity groups, each of which collectively bear a particular set of characteristics. All groups have strengths, limitations, and characteristics that define the culture and identity of the group."

— Pries, Betty. The Space Between Us (p. 88). MennoMedia. Kindle Edition.

How then can we breakdown the barriers of the Defended Self in understanding disability?

Shared Authentic Experience

"People are amazing." That was the line Charlie would say over and over again in the film 'The Whale'. His greatest fear was that his daughter, Ellie, would never really know how amazing she is. And when he shared his final words with his college students, he told them:

"These assignments--they don't matter. This course doesn't matter. College doesn't matter. These amazing, honest things you wrote--they matter."

— Charlie portrayed by Brendon Fraser in the film 'The Whale'

The honest stories we share with one another have a significant power to not only create understandings of ourselves, but also to interconnect us through shared experiences with one another and breakdown the barriers of our defended and false identities to which we claim. In being willing to simply sit with others while sharing openly and honestly about our abilities and disabilities we can discover the inner struggles of systemic ableism and self doubt or prejudices that have held us back from healing and finding an authentic understanding to reality.

If we can create environments of safe community and open hospitality, despite our differences, to share in equitable experiences with those of diverse abilities and disabilities, we can develop healthier understandings to both the unique characteristics of individuals and the amazing roles we play in all of our social environments. We transform our personal and social spaces not because of a just and legal need; but out of the desire for all to share in the experiences of life together.

Vulnerable Openness

Vulnerability is often misunderstood as being weakness and not a desired trait in most people's characteristics. We wish to personify a certain invincibility and independence while developing a facade of perfection.

In the ending of season 2 of 'The Bear', there was an extremely heart wrenching scene where on the opening night of his restaurant, Carmen (the main chef & character) ends up locking himself accidentally in the freezer locker. "I did it to myself!", he cries.

Frustrated with the exposure of his vulnerability and imperfection, Carmen begins verbally creating a defended identity through the blindness of the freezer door to whoever was listening. With the fear of his vulnerability being ever exposed again, he placed blame on his relationship to his girlfriend causing a distraction to his career. What he didn't know was that she was listening from the outside. Rather than opening in vulnerability to the relationship he could not see or control from the inside, he ultimately and tragically dismantled the experience of love and acceptance he could have received from the outside.

The same truth is in our understanding of disability and breaking down our own defended identities and self imposed ableism. By being willing to open ourselves in vulnerability to others, exposing our own inner disabilities and abilities, we are able to discover and experience the embrace of freedom and love socially and personally. As Brené Brown shares:

"The mark of a wild heart is living out the paradox of love in our lives. It’s the ability to be tough and tender, excited and scared, brave and afraid—all in the same moment. It’s showing up in our vulnerability and our courage, being both fierce and kind."

— Brown, Brené. Braving the Wilderness (p. 155). Random House Publishing Group. Kindle Edition.

Metanioa & Doing Things Differently

Perhaps the greatest battle in deconstructing our Defended Selves is in transcending the fear of doing things differently from the ways we have always understood and done them before. If we are going to ever truly embrace a holistic understanding of disability, we must stretch beyond the misguided definitions and labels that have for centuries been put upon those who live with disabilities — "unclean" and out of favour from God, possessed or inhabited by a demon or satanic spirit, grotesque or lacking in human likeness or dignity, and diminished in status or potential for communal participation and contribution in excellence.

The ancient Greeks used the word "metanoia" to describe the act of doing things differently from before. Dennae Pierre expands on this term in his forward to Alan Hirsch's and Rob Kelly's latest work saying:

“Rather than a simple solution, Metanoia is an invitation to a process of making visible what is currently invisible. It invites us to see differently, and to learn to behave differently, from a deep place of personal and corporate transformation. It requires us to have the courage to sit in discomfort, sorrow, anger, and shame as we inhabit the mind of Christ so that we may be transformed, healed, and renewed. Metanoia will form us not only to see the broken patterns of our lives and world, simply as an objective fact, but also to see through the eyes and heart of God himself.

The practice of Metanoia deepens our yearning for God, in ways that increase our longing to experience his kingdom on earth as it is in heaven. It attunes us to God’s wondrous reality. It increases our capacity to look at brokenness in the world through the mind of Christ, melting away the very shame and pride that keeps us from looking in the first place.”

— DENNAE PIERRE via the forward to ‘Metanoia: How God Radically Transforms People, Churches, and Organizations From the Inside Out’ By Alan Hirsch & Rob Kelly

Breaking down our defended and false self is more of an art work that takes a lifetime then it is a singular instance or moment in our lives. I have been in a wheelchair for 29 years and my understanding of what it means to be disabled continues to be a journey of maturity and submission as I breakdown the false self-perceptions I have internalized through personal expectations and the impacts of social systemic failures to which I have experienced in my society. Whether it is in pursuits of social justice reform or personal soulful transformation, discovering our Descriptive Self and breaking down our Defended Self leads us even further and further into our Deeper Self. It is to that sense of self and our understanding of disability I hope we can turn towards next.