My Relationship with Disability

My relationship with “disability” goes back to when I was a kid, and the impact it had was powerful. I wish I had a better understanding back then of how society, God and “disability” all come together but I didn’t. An illness that I saw as disabling was ultimately the reason I abandoned God for a while. My mom is an extraordinary woman. I remember listening at the top of the stairs with my eyes closed as she played the piano. I recall the light in her eyes as she talked about running. I can hear the love in her voice as she points to the costumes and outfits in pictures that she had made for us with her sewing machine, or told us about the outfits she would make in college. I remember the comfort of her running beside me as I learned to ride my bike and the joy of her pedaling next to me as we biked down the beach as a family.

And I can remember the ache and pain of watching all those things slowly getting stolen from her. I can still feel the anger sometimes; that so much of what she loved was snatched away from her by MS. The girl’s weekends with her friends from college. Having to go from running, to a cane, to a walker, to a wheelchair. Did God not know my mother? What could she possibly have done to deserve this? I saw affirmation in the godlessness of this world as I studied history: the Holocaust, the history of women throughout most societies, slavery practices in North America, the treatment of the people indigenous to this country… The list could go on and on of one group of people perceiving themselves as being better than the other and getting away with untold atrocities.

As I found God again, there was a timidity I had in approaching disability and God. Could my faith really stand up to my questions? Was this a space I wanted to seek in? Yet through this class I came to understand even more deeply that more often than not, biblically, a person’s embodiment was not tied to their sin. Furthermore, Jesus went to them time and time again and cared for them holistically: he went after the physical, the spiritual and even the provision of basic necessities. He ministered on every level and then called his followers to do the same.

It wasn’t God that failed my mother but me. My family. My society and its institutions. The “religion” I knew that said that God blessed the good people. Nobody explained to me that when it says in Psalm 37:4, “Delight yourself in the Lord, and he will give you the desires of your heart,” it meant that if you are delighted in the Lord, you’ll desire what God desires. It didn’t mean if you desire your mother to be healed, you have to reach a certain level of “Christian” to get it. In this context, it would more look like my mother not experiencing isolation in this society, of her having access to the medicines that she needs and the places that she needs to go. Of society benefiting fully from her participation. It would mean that she wouldn’t see herself as a burden because nobody would think to treat her like one. God loves my mom exactly how and where she is and He wants us to do the same. To reap the gifts that she uniquely offers as a creation made in the image of God. How short we fall in doing this for her and all people.

My mother is an extraordinary woman who has not let this disease called Multiple Sclerosis prevent her from impacting lives. Instead of giving into the pressure society puts on her to accept how things are, she identified gaps in where society cares for its people and worked with my father to create a business that provides more affordable, private transportation for those who require ramps and wheelchairs.

This class gave me language to engage with God and others in my community around what I sensed but couldn’t put words to for quite a while, particularly ableism.  Jesus came for everyone; his community was filled with people that society rejected, marginalized and oppressed because those things are not the ways of God. Our Father tells us repeatedly that he came for the widow, the orphan, the prisoner, the ones society throws out. God tells us to be an inclusive community: to love one another as you love yourself. To give and care and comfort. To do the things we are called to do requires all of these very necessary parts of the body.

I Corinthians 12:21-26 explains it best: “The eye cannot say to the hand, “I have no need of you,” nor again the head to the feet, “I have no need of you.” On the contrary, the parts of the body that seem to be weaker are indispensable, and on those parts of the body that we think less honorable we bestow the greater honor, and our unpresentable parts are treated with greater modesty, which our more presentable parts do not require. But God has so composed the body, giving greater honor to the part that lacked it, that there may be no division in the body, but that the members may have the same care for one another. If one member suffers, all suffer together; if one member is honored, all rejoice together.” And so we need to see ourselves, our community, as all one body with each part offering something so that we can all be whole. Just as Jesus honored the parts of the body that seemed weakest, so should we, because they are the ones that bring us to wholeness.

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Book Review – Discovering Trinity in Disability: A Theology for Embracing Difference

“We focus on disability and our Christian tradition because we have learned that disability is an enduring, fundamental aspect of humanity that has been manipulated and wronged by society… We searched our faith tradition for signs of disability and, indeed, we found the divine Trinity.” (Tataryn, 7) This statement is the crux of this book, helping readers move from a space where disability is at best, just a burden the person is meant to bear or at worst, a result of sinfulness or God’s wrath to a space where they recognize the Trinity in the embodiment of each person and our call as a community to be inclusive.

They start by examining what disables those in our community: our marginalization of people different from socially acceptable “norms” and the point of view that they are, “objects of pity and recipients of charity.” (Tataryn, 15).  What disables people is less often their different embodiments but rather the exclusion of them from the rest of society; of being viewed as not entirely whole, of having something missing, of being lesser. “By perceiving and treating disabled people as Other, we accept societal taxonomies of gradated human value, thereby rejecting the fullness of humankind and limiting our spiritual growth, both personal and collective.” (Tataryn, 15) It is necessary that we work to shift from the medical model of disability that views various embodiments as a tragedy that we strive to fix to the social model which instead says that disability is rooted not in the person but in the society that disables them.

Next they begin explaining what this inclusive community looks like. While the social model uncovers the root of disability, the Trinitarian Paradigm, as a supplement, “emphasizes the vital, universal need for human relationship.” (Tataryn, 22) They walk us through this by examining the conflicting perspectives throughout Christian history which skew us toward a viewpoint that frames an individual’s value in predominantly economic terms. Starting with the Hebrew Scripture, we start to understand the difference between seeing a person’s body as possessing divinity or demonic traits based on their embodiment.  When we examine Genesis, we see it points to a God who is a Creator and fond of diversity; to the fact that community is not built on similarity but on difference. “By ordering, that which has been created ‘man’ has created hierarchy, which produces in ‘man’ a further need: a relationship of equality, a ‘partner.’ …Human community is based in the difference between ‘man’ and woman.’” (Tataryn, 29) It is sin that divides us, not our differences. It is sin that creates the antagonistic, hierarchal attitudes of one group towards another. Ultimately, we reach Leviticus, whose purpose was to address sin. “Leviticus’s purpose is order, ritual, and the authority of the priestly caste, not complicated by human diversity.” (Tataryn, 32) They also walk us through some of the reasons why it is supposed that disability and ritual impurity are linked to one another, ultimately leading to the conclusion that if read through the social model we can see that the liminality is most often an outcome of life processes more than sin or God’s wrath. “But the prophets distinguish between those who are vulnerable or weak and those who are faithless and suffer as a result.” (Tataryn, 38)

Next examined is how Jesus disables the idea of institutionalized disability within society. “Jesus’ action is one of nullifying the established norms that have disrupted community. By approaching and engaging with individuals who have been rejected by the cultural and ritual codes of community, Jesus subverts the taboos of exclusion and practices radical inclusion.” (Tataryn, 43) It walks through various examples of this, noting how Jesus highlights human dignity, personhood and faith as well as the repentance from sin. It even notes the writings of Paul and Luke that strive to counteract the trend of physiognomy in their time (the belief that one’s physical traits reflected the character of a person). There’s considerable coverage of Paul and his encouragement of others to rejoice in their weakness because that is where God shows up. “In context with the day-to-day living of Jesus of Nazareth, the Resurrection instead signals a celebration of divine love known through the fullness of being human, without margins.” (Tataryn, 50)

Next we examine the role of community, or koinonia, in being a space where love and relationship for all people is lived out side-by-side. Examples from the prophets as well as Abraham and Sarah emphasize the importance of an inclusive community. “The Suffering Servant embodies the stigma linked to disability: causing disgust, shame, and sorrow. Yet the Suffering Servant embodies most completely the relationship between God and humanity, challenging us to look beyond our prejudices in building a new, fuller community than previously imagined.” (Tataryn, 53) In order to better understand what this call looks like and how we got to where we are, the authors dive into a wide variety of theologians from both Eastern and Western orthodoxy. This helps us to see how we get to our understanding of the Trinity today: one of relationship to one another. Operating out of this knowledge is a challenge that the church continues to struggle with. “Unconsciously, our church communities tend to conform more to the tyrannical societal norm than to the dictates of Christ. But with conscious awareness, we can become communities of love that drew people so compellingly to follow Christ in the nascent Christian Church.” (Tataryn, 71)

Next examined are the various models of Christian community: understanding that caring means having relationship with others, that caritas is a necessary outcome of faith and not the exercise of charity as we see today: we potentially give charitably to have others love our neighbor for us. It also looks at the relationship with God in the context of solitude (like the monastic tradition) or service (where oftentimes acting out of pity is confused for loving our neighbors). Amongst several other models, they also examine what is termed a Holy Fool, where “…the Christian (not necessarily a monastic) acts contrary to social norms, shunning public approval, creatively embodying Christ’s radical transformation of the natural world.” (Tataryn, 78)

Following this they engage in an examination of the sacraments: “…we exist in relation to God, to each other, and to the cosmos. Thus, our faith is rooted in our materiality, and this sacred substantiality, as it were, is manifested sacramentality.” (Tataryn, 84) By understanding that all creation is laced with divinity, because the Divine touched all of creation, we can recognize that God is present through creation. Early in the church moments of time that were viewed as particularly imbued with divine presence were called mysteries. As more and more structure was built around these things, societal prerequisites became linked to being able to engage in the sacraments. This attitude has been examined by the church in recent decades.

The last few sections examine miracles, true hospitality and being icons.  The section on miracles looks in depth at the story of a family with children of different embodiments that faces a disabling and exclusive society which they are excluded from participating fully in. “Miracles are associated with faith, sin, cure, prayer, and the power of God over nature to perform the impossible… In our time, we have created disability as a deviance rather than understanding it as an ordinary human occurrence… a miracle presents a quick fix.” (Tataryn, 97) Ultimately, the point is made that rather than viewing the healing miracles as a path to a quick fix perhaps we should understand it as Jesus’ engagement in the Trinity as well as his living out caritas on the Sabbath with people rejected by society. Hospitality examines the church (and all the people that make it up) and asks why we are allowing our hospitality to be defined by society. If you truly care about somebody, that means we also care for them, and if there should be any place that defines inclusiveness and hospitality it ought to be found in Christ’s community.  Lastly we have icons, which some see as a form of idolatry. When more closely examined, “Iconographic style implicitly conveys a transfigured reality and elicits… a recognition of their participation in its meaning… The Eastern Christian does not bow before an icon to worship the wood, but rather venerates the reality recognized through the material substance.” (Tataryn, 109) This allows an extension of one’s self to the Other, in truth, to create a connection not just between those we live with in community today but to tie all humanity through all time together.

In summary, the authors effectively walk us through disability via the lens of the Trinitarian Paradigm as well as the social model, helping readers to gain a more thorough understanding of the Christian faith and what it means to those whose embodiment is different from the accepted norm. It reveals the ways in which our views of humanity are distorted and how it wrongs all of society; that being present and living out caritas with all humanity in an inclusive community is where we find a greater presence of the Trinity and what we are called into as followers of Christ.

Works Cited

Tataryn, Myroslaw & Truchan-Tataryn. Discovering Trinity in Disability: A Theology for Embracing Difference. United States of America: Novalis Publishing, 2013. Print.

Reflection Paper: Ableism

It is estimated that 15 percent of any given population has disabilities that are visible, and that percentage would climb if we were to include things that are invisible to the eye, such as mental illness. (Tataryn, 18) Yet does such a large percentage of the population get to participate fully in the society in which it finds itself? Furthermore, does the society to which these individuals belong find themselves able to benefit from what these people have to offer? When people with impairments aren’t able to participate fully in the society to which they belong they are existing in a space where ableism is defining how they are perceived and treated.

“’Ableism’ names a subtle and pervasive bias that assumes nondisabled people…are ‘normal’ and that people with disabilities represent an undesirable deviation from this norm. The disability is seen as a personal dilemma to be privately endured and we’ve placed the responsibility to adapt on the individual with the disability.” (Kujawa-Holbrook, 211) Ableism is able to seen in all sectors of society. As an example, the church I attend just announced that a sign language interpreter would now be available for the hearing impaired during one of their five services. While this is certainly a step forward, it puts a constraint on when hearing-impaired people can attend service and groups them all together, effectively segregating them from the rest of the congregation. Many of the videos posted to media by my church also do not have subtitles, so it can be challenging for a person with that kind of impairment to feel truly connected to the community.

Publicly we face many ableism challenges, particularly in Cincinnati. Often aisles and entryways are not spaced appropriately for people in wheelchairs and in downtown areas they sometimes don’t have curb cuts or ramps. Additionally, entry into buildings or the use of a bathroom is often not possible because of the older buildings and lack of updates. Usually if my family is going out, we go someplace familiar or check out the location beforehand in order to confirm it is actually wheelchair accessible. This is true of many social gathering spaces, although the growing occurrence of family restrooms is very helpful and accommodating. However, when it comes to swimming pools or entertainment parks the options can be very limiting with no way to gain access to many of the rides or amusements.

Even in politics, the issues of disability are not often discussed unless it is in relation to the elderly or soldiers. That ties it even more to the idea, as the book mentions, that “disability” is a matter of tragedy rather than circumstance. Perhaps the reason it is so little discussed is because of the challenges faced in voting. Where many without impairments complain of the difficulty of voting, the impossibility for some to potentially obtain transportation, wait in line and navigate the voting booth can be a challenge. If they have a home, they can certainly write-in, but many who are disabled by our society find themselves homeless and therefore struggle to have a political voice.

When we look at theology, it is most certainly influenced by the perspective one has biblically. Does one view God as a Creator who spoke diversity into existence and continued to create and inspire diversity in His creations, as he did when He created humankind or told Noah to preserve the diverse life He had created through the Ark? Or does their view of God tie sin to differences between people and ignore that Jesus chooses to hang out with those who the Pharisees called “unclean” over those who were “pure?” Jesus demonstrates clearly that even those whose impairments were linked to their own personal sin were not made any less human because of it or any less worthy of His love and community. Furthermore, as a community, we are called to be one another’s burden bearers in Galatians 6:2.

But the attitude we more often hear says that a person’s life choices caused them to be in the situation in which they find themselves, supporting an ableist perspective. This could be things that people sometimes attribute to character flaws instead of illness or social injustice: addiction, prison sentences for past mistakes, diabetes or an eating disorder. But even if that were the case, it doesn’t change the fact that they are as much human as you or I and equally deserving of our love and companionship. When our ministry doesn’t resemble the ministry of Christ in the way that He dined, preached and lived alongside ALL in his community, we are allowing the paradigm of ableism to carry social injustice into our ministry and potentially nullify it.

 

Works Cited

Kujawa-Holbrook, Sheryl (Ed.) & Montagno, Karen (Ed.). Injustice and the Care of Souls: Taking Oppression Seriously in Pastoral Care. Minneapolis: Fortress Press, 2009. Print.

Tataryn, Myroslaw & Truchan-Tataryn. Discovering Trinity in Disability: A Theology for Embracing Difference. United States of America: Novalis Publishing, 2013. Print.