Disability And The Descriptive Self

This post is part of a series that starts here.

Several years ago, I was having coffee with a friend at a local coffee shop. As always, we started our conversation with some laughter before he began sharing about a resent encounter he had while going about his daily activities in the community. It seems he had struck up a dialogue with someone on the subject of disabilities and they thought to ask him, "Wouldn't you want to be normal?"

That's when my friend revealed something that I had never really contemplated before in the deeper sense. He told the person, "I am normal. This is the way I was born and have always been."

Born with Cerebral Palsy, my friend had no other life experience other than the mobility differences he grew up with since his birth. As far as he was concerned, this was his normal and the way he was meant to be. For him, God had created him in this body and he wouldn't want to be like any-body else.

I couldn't argue with him. Who was I to say he was meant to be any different? At the same time, I was confronted with a paradox of my own embodiment. Unlike my friend, I was not born with the paralysis that I have in my body today. For the first 15 years of my life I had a body with relatively normal physical abilities until a car crash caused a spinal cord injury resulting in quadriplegia. And I don't believe God intended my car crash to necessarily happen causing my injuries, either.

So was my friend then not considered disabled while I was? Truth is, we both find ourselves disabled. We simply relate to disability in different ways.

The first step in finding an understanding of the word disability is to separate its defended moralist ablism from the descriptive reality it has in our human identity. Disabilities are neither good or bad; they are simply recognized descriptions to the diversity of abilities within our human character. Betty Pries calls this our Descriptive Selves:

"Our descriptive self includes our characteristics, strengths, limitations, and the circumstances of our birth. It also includes the foundational framework for our being: our foundational human needs, the raw ingredients of emotion and thought, and so forth."

Pries, Betty. The Space Between Us (p. 78). MennoMedia. Kindle Edition.

When I first read Betty Pies's book 'The Space Between Us', I recognized that she was not necessarily addressing the disabled community. But her thoughts to self identity seemed to reveal something more in my understanding of disability and the way I embodied its meaning.

Characteristics, Strengths, & Limitations

Most people find characteristics within the described self under general categories: appearance (hair colour, skin tone, hight, weight, etc.), social roles (parent, spouse, child, friend, etc.), and professional roles (construction worker, doctor, lawyer, artist, teacher, etc.). We all find our stories in relating to these things.

But a lot of times our abilities are over generalized or assumed through bias as part of our human characteristics in identity. Perhaps most significantly in the ways they defer from one another and change over time. It is almost like we defer to the expected norm without paying attention the the many differences we all have in our strengths and limitations.

Our relationship with disability starts not in the comparing of our abilities to one another, but in the willingness to articulate the abilities, strengths, and limitations we have within ourselves first. It is important to acknowledge that those abilities and inabilities can also change over time both from strengths to limitations and visa-versa. Ask yourself, “What are the things to which I am unable to do today both physically and psychologically?” In answering that question, we are recognizing our own disabilities.

Once we have roots in our own relationship with disabilities, limitations, and strengths, we can then recognize and find understanding to the described disabilities, strengths and limitations of others without moral defended ableism. By becoming self aware of our disabilities we also become interdependently aware of our community. And as Henri Nouwen so beautifully reveals, the very nature and presence of God’s work amongst us:

“When we become persons, we become transparent to each other, and light can shine through us, God can speak through us. When we become persons who transcend the limitations of our individual characters, the God who is love can reveal himself in our midst and bind us into a community. We become transparent. Others lose their opaqueness and reveal to us the loving face of our Lord.”

— Turn My Mourning into Dancing: Finding Hope in Hard Times by Henri Nouwen

Circumstances of Our Birth & The Language Of Embodiment

There is already a lot of books out there in psychology and physiology that reveal the impact our birth and childhood have on our understanding of being and who we are. But my conversation with my friend really opened a revelation to me in the way I understood the language of embodiment and how we practice a multi linguistic awareness to our being.

Growing up with the limitations and disabilities my friend had since birth, allowed for him to recognize, interpret, and understand the needs and senses to which his body communicated with; both to others but also particularly to himself. When his limbs were tired or in pain, he would know to rest them or medically seek help to heal them. He would know how to see them as part of his wholeness in being while respecting their limitations and boundaries.

For most people, this is a given subconscious reality and second nature within our language of embodiment. However, as I contemplated my friend's truth of normality, I realized my language of embodiment had been rather deconstructed or frayed by trauma, grief, or loss. In some sense of the description, it is almost like at some point post my spinal cord injury, I disassociated myself from parts of my being and therefore ignored their language of embodiment. The parts of me that became paralyzed seemed inconsequential and perhaps not as significant to my understanding of self. As Hillary McBride characterizes it:

"Being a body, seeing the self as inextricable from our physicality and our physicality as the expression of our personhood, invites us into wholeness. But when the self has been shattered and fragmented—as it has been for many of us—collecting the fragments, believing they belong to us, and naming them as good is a politically rebellious, spiritually powerful, and biomedically healing practice."

— McBride, Hillary L.. The Wisdom of Your Body (p. 15). HarperCollins Canada. Kindle Edition.

Coming to this realization, I recognized a real need to reclaim the wholeness of my bodies existence. In some sense, I had been reborn into a body that needed to forget its birth language, but also relearn a new language of embodiment that included the sight, feelings, smells, and internal responses of sweating, spasticity, and the effects of autonomic dysreflexia. Paralysis is not a state of not feeling but rather feeling and sensing my being differently.

We cannot reduce the language of embodiment to a singular mono-regulated standard of communication. The human body is unique... fearfully and wonderfully made... so that our descriptive language of embodiment is multilingual and not just a normality of being.

Foundational Human Needs

We have certainly delved deep into the Descriptive self and I don't want to exhaust our imaginations into this first step of understanding disabilities within all of our identities. But within the descriptive nature of our beings, we must also acknowledge the very real need for a foundation of security, self determination, meaning, and belonging. The real secret however, is that these foundations are built upon a community of healthy relationships and not individual achievements. As Al Etmanski has said:

"There is no such thing as excellence or independence without interdependence. Everything that happens in our life can be traced back to a caring relationship. Whether it’s in business, politics, play, school, work, or love, we make our way in the world only because of the caring actions of others. The presence of heartbreak, personal upheaval, chronic illness, infirmity, or disability doesn’t create vulnerability. Our refusal to acknowledge our dependence on the support of others does.

The denial of dependency is a personal, organizational, and societal weakness. We pretend to be who we are not. We develop a false sense of power. We allow our culture to perpetuate the myth of independence, as if it had emerged fully formed without debt or responsibility. And we rob those who are open about their vulnerability of one of their greatest gifts: teaching the rest of us how to live and love with our vulnerabilities."

— Etmanski, Al. The Power of Disability: 10 Lessons for Surviving, Thriving, and Changing the World (pp. 144-145). Berrett-Koehler Publishers. Kindle Edition.

Being willing to articulate and recognize the disabilities within our descriptive selves reveals a willingness to embrace healthy vulnerabilities that foster the very foundations of our interdependent natures as human beings. As many theologians and philosophers have said for centuries... we have been created for relationships. It is these relationships to which create our sense of security, self determination, meaning, and belonging amidst all abilities and disabilities.

Of course this opens a gigantic exploration of conversations into human rights and ethical or moral responsibilities to confer dignity. In one sense, I want to say that those responsibilities cannot be polarized to the individuals or even majorities extremes; but rather discovered in a transcendent reality of seeing those responsibilities through a deeper nature, one which is linked between the creators vision and his/her relationship with creation itself. But I also want to acknowledge that these are conversations we can explore in future. Particularly, I imagine some of these conversations may come out in our next post while looking at the Defended Self.

A Note On Restoration & Healing

Before concluding our thoughts of Disability & The Descriptive Self, I felt rather drawn to comment on a struggle I think many of us have in trying to describe ourselves in the afterlife or resurrection, particularly as it relates to disability.

I have heard descriptions for the disabled on both extremes in relationship to healing and how we may experience resurrection and the afterlife. Some have posed the theological acknowledgement that Jesus still barred his scars in resurrection form and therefore we also will be raised in such a way as to resemble the abilities and disabilities we have in the here and now. Of course, there is also those who have firmly stated a belief in being restored or healed to the full able-bodied expressions of human embodiment commonly assumed today.

Let me first say that creation as it is today is absolutely an evolving artwork and masterpiece being orchestrated by our creator and God. As such, Philip Yancey points out some very pointed truths while saying:

“When God created, he invented the media as he went, calling into being what had existed only in his imagination, and along with every free choice came a limitation. He chose a world of time and space, a “medium” with peculiar restrictions: first A happens, then B happens, and then C. God, who sees future, past, and present all at once, selected sequential time as an artist selects a canvas and palette, and his choice imposed limits we have lived with ever since.”

— Disappointment with God: Three Questions No One Asks Aloud by Philip Yancey

The fabric of our descriptive natures are most definitely entwined with the realities of space, time, limitations, and the imaginative media God creates around and in us today (Acts 17:24-27). But the contemplation of tomorrow and the day after that is rather left to a mystery which is beyond anything we might imagine today; particularly the afterlife and resurrection. As John speaks of the new world, all will be new (Acts 21:5).

As I draw a conclusion, I return to the conversation I had with my friend several years ago and the question posed to him, "Wouldn't you want to be normal?"

By now, I think we can all acknowledge that normal does not exist. What we equate to our being and existence is far more significant and incredible than to simply be held to a comparison of the mundanity we call "normal". As we consider what it is we may become in future... I rather submit to the even more expansive and creative imagination of the one who created me. As he/she creates the new media of resurrection, I completely trust that my being will equally be as new and exciting beyond anything I could imagine on my own. In the mysteries of that description... I await revelation!