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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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.