Disability Series: Part 1
The onset of disability came early in life. I weighed 1 pound and 11 ounces when born prematurely in the mid 1980’s. Within a couple of months, I developed retinopathy of prematurity, an eye disease which left me completely blind in one eye and with severe low vision in the other.[1] Fear of the innocuous, like tangerines, grass, and the feel of water, characterized my infant years to such an extent that my parents were hard pressed to bathe and feed me. Yet I knew about God’s existence by the age of three. I knew him through my mother who took my brother and me with her to a basement level church sanctuary.[2] Every day at noon, she poured her heart out with vocal fervency before God. This experience of God as lovingly gentle and as one who invites us into his presence with the full spectrum of our human emotions comforted me throughout my life. I grew up loving God and his Word, attended church regularly with my family, and received salvation when I turned seven. However, that same inviting love and acceptance has not always been reflected in the church, with some holding unintentionally negative or stereotyped attitudes of me as a person with a disability.
I was often told, while growing up, that it was the fault of my mother’s unconfessed sin or lack of faith that is to blame for my vision loss. My mother is my spiritual mentor and the strongest woman of faith I know,[3] but every year on the night of my birth, she suffers too much guilt and self-blame to sleep, not helped by unwarranted judgment from those who mean well. Others came forward to offer their prayers of deliverance and miraculous healing. I am very grateful for prayer but hesitate when the content assumes I must be demon possessed or cursed, thus turning my physical disability into a moral one.[4]
By comparison, being praised as a blessing or inspiration might seem benign. But comments such as, “I met God through a blind girl,” after singing during Sunday service made me chafe uncomfortably. Far be it from me to deny anyone the grace of God they receive through what I do, but hailing disability as “blessed” romanticizes the often painful and ostracizing experience of being disabled and reduces me, the individual, to my disability.[5]
Other common attitudes regard me as an object of charity, a tragedy, or an undesirable and abnormal defect. The result is that people treat me with pity or consider me a burden. Worse is when they ignore me altogether.[6] I often feel defined by my white cane rather than for the person I am in Christ. Such attitudes become devastatingly destructive when generalized to all instances of disability or when used to define the totality of a person’s life. It not only negatively impacts the person with a disability but their family and loved ones as well.
Negative attitudes, not a lack of amenities like ramps and elevators, remain the biggest barrier for people with disabilities in the church today.[7] While it is natural for people to fear the unknown (just as I was inconsolably afraid of tangerines until my mother innovated ways to acquaint me with one[8]), the fear, anxiety, or discomfort that lies beneath negative attitudes should not and must not prevent God’s people from receiving those with disabilities into the lifeblood of church community. In keeping with Jesus’ command to love one another (John 13:34-35), people with disabilities are to be treated with dignity and respect as human beings made in the image of God (Gen 1:26-27).
Since God does not perceive people according to man-made categories, separate the person from their disability and recognize them as someone fearfully and wonderfully made by the hands of the Creator Father (Ps 139:14), rather than as someone primarily understood in terms of their disability. Believers who have disabilities are members of the household of faith, children of God, and co-heirs with Jesus Christ (John 1:12-13; Rom 8:14-17). Thus, they deserve the same honors, rights, and privileges shared by all brothers and sisters in Christ. Their full inclusion is not out of pity, charity, or social-justice but out of obedience to God in unifying the church body, worshiping God, and making him known to others (John 17:20-26; Matt 28:18-20).[9] Believers with disabilities are also anointed with unique gifts of the Holy Spirit which the church community must create room for and humbly receive.[10] Without these, the church body is fractured and incomplete (1 Cor 12:4-20).
I encourage laity and leadership alike to ask what their attitudes are toward people with disabilities and where those attitudes come from. In my observation, attitudes like the ones encountered throughout my life stem from the world (i.e. culture and society) or from a weak or incomplete theology on the intersections of God, faith, sin, suffering and disability. I ask further whether those held attitudes ought to be what characterizes one’s thoughts and actions toward people with disabilities in church community. The church should lead the way on thinking through complex matters Christians face in the world today, but there is a lack of training, teaching, and guidance in the area of disability.[11] Without guidance from church leaders, laity will inevitably come up with their own ideas about disability or absorb messages about disability from society, whether it be from imbalanced secularized theology, unconscious prejudice, or the human rights movement.
Laity and leadership are gently urged to take the time to reflect in prayer and to invite the Holy Spirit to search what is in their hearts (Ps 139:23-24) while seeking out opportunity to “do good to everyone, and especially to those who are of the household of faith.” (Gal 6:10, ESV). The Church must strive to be that sanctuary of God's permeating love and welcoming presence, just as it was in one of my dearest, first living memories. And it must strive to be this for all people. Let the church receive people with disabilities—not as faithless, demon possessed, cursed, pitiful, defective, or a burden on the community—but as loved by God, covered by the blood of Christ, cherished as family, and valued for enriching the body.
Continue reading this series: Part 2, Part 3
References
[1] National Eye Institute, “Retinopathy of Prematurity,” National Institutes of Health, 2019, https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/retinopathy-prematurity. Retinopathy of prematurity (ROP) is an eye disease of the retina. It occurs in some premature infants weighing 2¾ pounds or less. ROP is a leading cause of childhood blindness and visual impairment.
[2] This was at a Southern Baptist church in Kansas.
[3] My mother holds a PhD and MDiv degree and is an evangelist.
[4] The churches I attended throughout my life tended to be Southern Baptist, Evangelical, or non-denominational.
[5] Dan Goodley, Disability Studies: An Interdisciplinary Introduction (Los Angeles, CA: SAGE, 2011), 6-7, table 1.1. This illustrates what is called the moral model of disability. The moral model views disability as a punishment from God due to sin or moral failing. It also takes the form of a blessing given by God as a test or trial in order to better a person’s faith or spiritual maturity.
[6] George Henderson and Willie V. Bryan, Psychosocial Aspects of Disability, 4th ed. (Springfield, IL: Charles C Thomas, 2011), 7-10. They describe the charity, medical, or functional model of disability, which is frequently expressed in charity organizations, hospitals, rehabilitation centers, and government policies.
[7] Melinda Jones Ault, Belva C. Collins, and Erik W. Carter, "Congregational Participation and Supports for Children and Adults with Disabilities: Parent Perceptions,” Intellectual and Developmental Disabilities 51, no. 1 (2013): a3748, https://doi.org/10.1352/1934-9556-51.01.048.
[8] Encountering a cold, damp tangerine by touch for the first time was very distressing as a toddler. My mother had to introduce me to this fruit without scaring me with unfamiliar sensations. She did so (with trial and error) over the course of many days. Her tactics include bringing the tangerine up to room temperature, hiding it in enclosed hands so that I would touch her familiar skin first before cautiously exploring the tangerine inside, and spending a full day ripping up newspapers to simulate the act of peeling.
[9] Thomas Reynold calls for the inclusion of people with disabilities to go beyond their mere physical presence to mutual care, integrated fellowship, and the recognition that they are persons with worthwhile contributions; Thomas E. Reynold, “Invoking Deep Access: Disability beyond Inclusion in the Church,” Dialog: A Journal of Theology 51, no. 3 (2012), 213-214, https://www.academia.edu/12404952/Invoking_Deep_Access_Disability_Beyond_Inclusion_in_the_Church.
[10] See for example, Hans S. Reinders, “Watch the Lilies of the Field: Theological Reflections on Profound Disability and Time,” in The Paradox of Disability: Responses to Jean Vanier and L'arche Communities from Theology and the Sciences, ed. Hans S. Reinders (Grand Rapids, MI: Eerdmans, 2010).
[11] For example, see Naomi H. Annandale and Eric W. Carter, “Disability and Theological Education: A North American Study,” Theological Education 48 no. 2 (2014): 94, http://faithanddisability.org/wp-content/uploads/2018/06/2014-Annandale-Carter-TE.pdf. This study acknowledges that most seminary students preparing to enter church ministry in North America receive little to no training on matters of disability.