Discussing Amy Kenny, part 3

I

The discussion sessions for My Body Is Not a Prayer Request have finished, but I wanted to share some further resources for those who are interested in following up on topics we touched on. 

Anabaptist Disabilities Network: https://www.anabaptistdisabilitiesnetwork.org/

Christian Reformed Church Thrive: https://www.crcna.org/disability

(Episcopal) Deaf and Disabilities Ministry Exchange: https://www.facebook.com/DisabilityMinstryExchange

Presbyterians for Disability Concerns: https://www.facebook.com/PresbyteriansForDisabilityConcerns and http://www.phewacommunity.org/pdcdisabilityconcerns.html

RespectAbility: https://www.respectability.org/ and https://www.facebook.com/RespectAbilityUSA

UCC Disability Ministries: https://www.facebook.com/UCCDM/ and https://uccdm.org/ 

United Methodist Committee on Disability Ministries Ministries: https://umcdmc.org/ and  https://www.facebook.com/DisAbilityMinistriesUM. Deaf and hard-of-hearing ministries is a separate group, https://umdeaf.org

II

On 193, Kenny offers a reading list. I have expanded this into the other topics of this series, as well as a few updates that post-date her book, with a look at liberation theology and history, which forms the foundation of all the books. Links included for those I have written about.

Black, Kathy. A Healing Homiletic: Preaching and Disability. Nashville: Abingdon Press, 1996. Pioneering application of Eiesland’s principles in re-visioning the implications of healing in the gospels.

Bushman, Richard. The Refinement of America: Persons, Houses, Cities. New York: Vintage, 1993. A survey of one of the few trickle-down theories that have worked, chapter 3 traces the Enlightenment notion of a well-ordered body, but doesn’t carry through to disability (although that is not the topic of the book).

Cone, James. A Black Theology of Liberation (50th anniversary edition).  Maryknoll: Orbis Books 2020. With Wilkerson, important background for Kendi as well as the tone of the disability movement.

Davie, Ann, and Ginny Thornburgh. That All May Worship: an interfaith welcome to people with disabilities. Washington: National Organization on Disability, 1997. OP, available online: https://sacredplaces.org/uploads/files/462725613607030908-that-all-may-worship.pdf.

Davis, Lennard, ed. The Disability Studies Reader, 4th ed. New York: Routledge, 2013. Wide-ranging textbook, a more comprehensive version of the Nielsen history listed by Kinney.

Eiesland, Nancy. The Disabled God: Toward a Liberatory Theology of Disability. Nashville: Abingdon Press, 1994. Groundbreaking application of liberation theology to disability that proclaims God as disabled. Includes a Eucharist that got me into trouble in seminary.

Gutierrez, Gustavo. A Theology of Liberation: History, Politics, and Salvation (15th anniversary) Maryknoll: Orbis Books, 1988. From a Catholic priest who originated the term liberation theology.

Hiebert, Theodore. The Beginning of Difference: Discovering Identity in God’s Diverse World. Nashville: Abingdon Press, 2019. http://flyingkittymonster.blogspot.com/2020/08/a-theology-of-diversity.html

Jordan, Winthrop. White Over Black: American Attitudes Toward the Negro, 1550-1812. Penguin, 1969. http://flyingkittymonster.blogspot.com/2020/05/white-over-black.html

Kenny, Amy. My Body is Not a Prayer Request: Disability Justice in the Church. Grand Rapids: Brazos Press. https://flyingkittymonster.blogspot.com/2022/08/sturmisch-bewegt.html

Melcher, Sarah, Mikeal Parsons, Amos Yong, eds. The Bible and Disability. Waco: Baylor University Press, 2017. More comprehensive than the Yong book that Kenny cites in her list. https://www.h-net.org/reviews/showpdf.php?id=51631

Rieger, Joerg and Priscila Silva, “Liberation Theologies and Their Future: Rethinking Categories and Popular Participation in Liberation” Religions 14 (7, 2023): 925 (https://doi.org/10.3390/rel14070925)

Walker, Robert L., ed., Speaking Out: Gifts of Ministering Undeterred by Disabilities. United Methodist Association of Ministers with Disabilities, 2012. Ecumenical, stories of people with disabilities called to ministries.

Wilkerson, Isabel. Caste: The Origins of Our Discontents. New York: Random House, 2020. http://flyingkittymonster.blogspot.com/2020/11/a-caste-for-casts.html

III

News items that came up during the discussions.

Dingle, Shannon, “This is why disabled people were no devastated by the Christian silence on health care” Washington Post July 28, 2017. https://www.washingtonpost.com/news/acts-of-faith/wp/2017/07/28/this-is-why-disabled-people-were-so-devastated-by-the-christian-silence-on-health-care/: among the justice concerns that churches need address about disabilities.

Garson, Justin, “Seeing Depression as Having a Purpose Could Aid Healing” Psychology Today June 19, 2023. https://www.psychologytoday.com/us/blog/the-biology-of-human-nature/202306/how-seeing-depression-as-purposeful-may-promote-healing: on the question of why conditions are labeled “disorders”.

Kase, Em, “Make your local LGBTQ+ Pride Event Wheelchair Accessible” https://unitedspinal.org/make-your-local-lgbtq-pride-event-wheelchair-accessible/: far too few “inclusive” events are really inclusive

Velle, Elaine, “National Gallery of Art Apologizes for Removing Visitor with Disability” Hyperallergic July 25, 2023. https://hyperallergic.com/835400/national-gallery-of-art-apologizes-for-removing-visitor-with-disability/: “So many disabled people have had experiences being excluded at galleries and not being able to attend. A lot of times, disabled people get exhausted from having to ask over and over so they just stop.”

Discussing Amy Kenny, part 2

The second discussion session of Amy Kenny's My Body is Not a Prayer Request tied up some loose ends from before and then turned to the medical and social models of disability and their implications. 

We started with some addenda to  the previous discussion. 

• Another factor for acknowledging justice concerns is not only opposition to the ADA from religious organizations, but later to laws such as the Affordable Care Act, particularly those dealing with pre-existing conditions, coverage of mental health, and universal coverage.
• The “crip tax” (63): costs of disability that aren’t covered by insurance. Examples include the Indiana vehicle excise tax: an adapted van can cost $60,000, and if bought as a finished unit, which is often necessary, the tax is charged on the full price, instead of an unmodified van.
• Compounding historic opposition to the ADA and similar measures, churches have a troubled past. Eugenics was once popular among churches as well as elsewhere, and resulted in so-called ugly laws, involuntary sterilization, and unnecessary institutionalization. Thinking of Kendi's book, racial laws often specified that a small amount of Black ancestry resulted in a legal description of being racially Black despite appearances, similar to determinations of Jewish ancestry of the Nuremberg Racial Laws. People with disabilities were the first to be killed in that period as well (Aktion T4)
• ADA accommodations are enforced by civil lawsuit. They have been used as a scapegoat, e.g. Georgia voting locations that made voting difficult for minorities were "needed" because of a lack of ADA-compliant accessibility. 
• Transportation is often a problem: ride-share drivers often zip by or refuse people with service dogs or assistive devices. A local residential facility doesn’t operate its transportation van on weekends, relying on ride-share, which can be uncertain. 
• Restaurants seat people with visible disabilities in unsuitable locations, and while there’s less of it, servers often ask a companion what a disabled person desires. See the list on 52-53 for many other real-life situations.
• One can also get stuck in a loop: an agency or company can’t legally say no, but never get around to saying yes.

Kenny mentions a medical model of disability (10ff). It is one of two that are generally used, the other being social.

• The medical model focuses on medically diagnosed impairments as something to be fixed and made “normal.” It is an individual point, and leads to variations from “normal” being labeled as “disorders.”  
• The use of “disorder” in a diagnosis is increasingly challenged. Trauma responses, for one, are not disorders: as one member stated, PTSD is “a reasonable response to an unreasonable experience” and a healthy response, which, if not expressed, can lead to serious problems. (An emerging term is “moral injury”). Likewise, neurodiverse conditions such as Autism Spectrum Disorder are not something that is wrong, but a different pattern of activity. (For a thoughtful article along these lines, see  Justin Garson, “Seeing Depression as Having a Purpose Could Aid Healing” Pyschology Today June 19, 2023. https://www.psychologytoday.com/us/blog/the-biology-of-human-nature/202306/how-seeing-depression-as-purposeful-may-promote-healing)
• Stigma is often part of a diagnosis, and especially mental problems. “Mental illness” is often scapegoated in media and politics. 
• Mental illness is often wrongly equated with neurological conditions.
• Reality is that those with mental illness are far more likely to be the victims of violence than perpetrators. Mental health is often difficult to get covered by health insurance, compounding the problem.
• One result of the medical model is the charitable appeal, portraying people with disabilities as the object of pity, and asking others to provide relief through patronizing appeals for donations and actions that involve doing things for disabled people. The Labor Day Telethon is perhaps best-known in American culture, and it has led to much discussion of “inspiration porn.” The term was coined by the late Stella Young, known in disability circles for saying that a good attitude can’t make stairs into ramps. Rather than celebrate accomplishments in context, it holds disabled people up as inspiring examples of “overcoming” their disability and is regarded as exploitation by many.

The social model acknowledges the reality of medical diagnoses and impairments, but maintains that people are disabled by built environment, culture, and similar factors. The diagnosis not the ultimate arbiter. As a cultural model, it challenges what is considered "normal." It focuses on Universal Design, a growing movement in the design of facilities that enables community integration. For example, ramps and power doors also benefit delivery people and parents pushing strollers.

• As we have been reminded this summer, following the Revised Common Lectionary, Genesis states that God’s creation is good (Genesis 1.31) in all of its diversity.·
• In churches, the social model is reflected in full participation and use of “ministry with” rather than the charitable model of “ministry to.” It is not an “outreach ministry” but an “inclusion effort.”
• Concerns in churches include community integration and inclusion, leadership development (many still refuse or place serious obstacles to disabled leaders at any level).·       

·      The group is now taking a break. Sessions for Fat Church are scheduled after the break, and then there will be sessions covering all three books. A resource list for this book will follow soon.

Discussing Amy Kenny, part 1

A church in the Indianapolis area is conducting a summer reading group for three books. The first was Ibram Kendi, How to be an Anti-Racist. The second, which I am leading, is Amy Kenny, My Body is Not a Prayer Request. The third (late August) will be Anastasia Kidd, Fat Church. 

This post shares notes and thoughts from the first group session, July 23, 2023.This places the start of the discussion during Disability Pride Month, which centers around the ADA signing on July 26, 1990. 

I see a common root among the three books: liberation theology, a movement whose origins come from Latin America in the 1960’s (although, historically, one could make the case that the principles and many movements date to late antiquity). Liberation theology argues that the Bible shows a God who has a particular concern for the oppressed, who has worked through history to bring change for these groups. 

When I was in seminary, our disabled students group allied with the African-American students group on the basis of liberation theology. We discussed the problems arising from judgments based on external appearances without considering the abilities of those involved. The three books in this group are linked by attitudes and activism informed by this approach. Kendi’s work shows the need for anti-racism: action and advocacy against racist attitudes and structures (it should also be noted that Kendi narrates his own growth in this area). Kenny likewise calls for anti-ableism: challenging prejudice and discrimination in attitudes, and structural changes, including but not limited to the built environment and exclusionary practices. 

We discussed points of contact with disability, including:

• the vagueness and problems of rapidly evolving language, of often not knowing what to do, not having a diagnosis, having an unusual condition, or being misinformed (this can also include the difficulty of keeping up with medical advances, such as recent findings in neurodiversity)
• seeing people for who they really are, not for the disability
• not talking about it, or using euphemisms ("infantile paralysis" for polio, "differently abled") and similar fearful responses akin to early reactions to HIV
• some churches that do not believe a disability exists, which is especially true of those with neurological differences being told to behave or believe and be healed; as the book title indicates, some churches have taught a theology of miraculous healing instead of inclusion in the community 
• being "out": many disabilities are invisible, and because of discrimination concerns, the people who have them are often reluctant to disclose
• general invisibility: it was only in the 1960's that people with disabilities began to appear in public social life; today's social media has been helpful in resolving this, as well as creating a sense of community and support 
• impairments that are not viewed as a disability, vision correction being one example--this has a long history, including the Reformation theologian John Calvin (see section IV here) or being letf-handed (once regarded as a sign of being cursed, and still difficult in many situations)
• housing is still a problem, with refusals to accommodate and a general lack of physical access features. 

We then discussed various topics that arose (and touched on others that we will likely come back to).

• One of the first steps is to recognize that the modern idea of "normal" is a fraud whose origins lie in statistical methods that are used to create and then justify categories and ranks. Further, “disorders” are often the result of differences in development or structures, or normal reactions to events (e.g, ASD, PTSD). See Jonathan Mooney, Normal Sucks (New York: Holt, 2019). http://flyingkittymonster.blogspot.com/2021/06/just-setting-on-dryer.html
• Universal Design is a movement emphasizing the benefits for everyone from accessible design—e.g., ramps and power doors benefit people pushing strollers or delivering packages. (https://universaldesign.ie/). This also relieves the feeling of being singled out as "that" person who has to be accommodated.
• Striving for justice needs to include accounting for opposition to the ADA from many churches, seeking equity so all can participate, and inclusion at all levels of organizations. 

The study uses a discussion guide provided by the Christian Reformed Church Disability Concerns unit, and my review after first reading the book.

Stürmisch bewegt

Recently, disabled people and advocates have been speaking about another “ism” that diminishes people—ableism. As I have joined with others in explaining, ableism makes false assumptions about disability and leads to discrimination and exclusion. So I am pleased to join the Psalmist and be glad to enter this house of the Lord and share some thoughts about reading a new book:

Kenny, Amy. My Body Is Not a Prayer Request: Disability Justice in the Church. Grand Rapids, Michigan: Brazos Press, a division of Baker Publishing Group, [2022].

Gustav Mahler described the final movement of his first symphony as the cry of a wounded heart. This book is a similar cry—more than once, Kenny states that she is screaming. The stormy dissonance of the opening of the movement is reflected in Kenny’s first page as she tells of an encounter: “God told me to pray for you . . . . God wants to heal you.” Like Kenny, many of us have been there as the ultimate ableism loads presumption upon presumption and tops it with a divine imperative. 

These early chapters are hard, because the scream story continues with more recitations that will be familiar to many people with disabilities. Like much racism, ableism lurks in structures beneath the surface, formed on a foundation that we often overlook. Accommodations are considered an add-on, a patch to the structure, not an essential of design. 

The implied statement of ableism is that something must be fixed, that people with disabilities are not whole, and that our faith is lacking. This leads the author to state that the real need is to be freed from ableism. In the same process as outlined by Beth Allison Barr, where cultural notions create faulty theology, we see a chain of thought: disability makes people uncomfortable, leading far too many to presume sin lies behind it, with the result that scripture is twisted to fit presumptions while overlooking the passages that don’t fit those cultural notions.

Culture teaches us that people are valued for their productivity, and disabled people are not productive (and if they are, they require costly accommodations and extra time). We are “ministered to” instead of “with,” reinforcing a segregated second-class status, and silenced from instructing others. When the ADA was adopted, some churches strongly opposed it, and many are still not compliant or accessible (or when they are, clumsily so). It’s a sign that disabled people are not considered fully human, which both picks up from and contributes to eugenics.

What to do then? After Mahler’s cry of wounded despair, hope emerges in themes of contemplation that transform the despair. Kenny finds hope in disabled people who, among all others, can best grasp that Jesus shows the way to transformation. His call to μετανοια has urgency. Although generally translated “repent,” which has become a religious buzzword with no more meaning than empowerment or some of the other corporate gibberish that has infested our language, its call is to renew the mind, to transform our ways. Instead of the medical model of fixing things, she asks us to embrace disability and use that model in interpreting Scripture. In this light, the healing narratives are not about cure and eradication, but restoration and acceptance. Old stories gain new life: Jacob is changed from a schemer to a forgiving Israel with a limp.

In these and many other examples, we come to understand interdependence in a renewed and transformed society. Accessibility becomes the beginning point, not a destination or a checklist. All of creation is good; and our eschatology is also transformed: Micah says that God will gather the lame and those who have been driven away.

Mahler is a “heavy” composer of deep themes and subjects, but he has his own kind of wit if one will hear. So does Kenny—and it is copious, and often directed at the medical model. Referring to cayenne pepper ointments, she writes that they only made her hunger for a vindaloo curry; or that despite x-rays and radioactive injections, she never gained superhero powers as Marvel stories might lead one to believe. Turning her sights to the Bible, she states that the description in Daniel 7.9 sounds like “a wheelchair to me, and one that gives new meaning to burning rubber.” Ezekiel 1.15-21 describes God with a massive mobility device that is lifted by four angels with fused legs and colossal wheels that encase wheels that glisten like topaz. If God uses a fiery, shimmering, turquoise wheelchair why shouldn’t we?

Ableism, with its cultural roots, is often selective. In one example, she asks if people with eyeglasses have been targeted for prayers of cure. John Calvin even attributed their design to science and learning as a gift of God that correct natural changes, while leaving other devices (such as mobility aids) to the realm of differences resulting from the corruption of sin. (Selective ableism note: of course, he needed glasses for himself. There’s an interesting YouTube video exploring this idea). Why can’t these other adaptive devices become mainstream, and even display a little fashion? But then, as Kenny writes, it is human-made stuff that is orderly (especially for lawyers-turned-theologians), while God’s canvas of creation is wild, unruly, and exquisitely messy.

In the end, Mahler finds a sort of peace. It is somewhat defiant, especially near the end, as he directs the horn players to stand and point their bells outward. He later went on to write several more symphonies, each of which explores an aspect of transformation, of finding peace, of living with meaning in an exquisitely messy world. I look forward in hope that Kenny will also grace us with more of her thoughts and findings as well.

Disclaimer: I borrowed this book from the Indianapolis Public Library, once again to the consternation of someone, I'm sure. The only stipulation was to return it within three weeks, which I did. 

The New Miracles

 The New Miracles: a response to Katie Booth, The Invention of Miracles: Language, Power, and Alexander Graham Bell’s Quest to End Deafness (New York: Simon & Schuster, 2021)

Classical tragedies revolve around a plot line of a character who acts out of a perceived noble intent. However, the character overlooks a flaw in that intent, and that flaw ultimately brings the character down. There’s a way in which this is true of Alexander (Alec) Bell, the inventor of the telephone. Bell sought to make communication easier—but in the process, overlooked that he sought to quash a culture. His efforts to promote oralism and bring an end to the use of sign language, and his promotion of early eugenics, have left a legacy that Deaf people still contend with, even though the end result has been to open new channels of communication. 

Booth explores this complex legacy as she opens the book with a story about her Deaf grandmother being in a hospital. Whenever grandmother sought to sign with someone, “she was treated as a bother,” and the staff would only respond to Booth or her mother’s spoken requests (3). Some discussion of law corrected parts of that problem, but it led to reflection on her grade school history classes, where she learned that Bell invented the telephone. This seemed “as absurd as introducing Adolf Hitler as a vegetarian who once ruled over Germany” (12).

 

Pursuing a more complete story, Bell’s work began with his father, who sought to devise a universal alphabet for missionaries. Using this, they could read the Bible aloud in any language, even they didn’t understand it. (We’ll save the theological discussion of this notion for another post). Believing that speech was what made one human, it followed that any sentient being needed to learn to speak—with a voice, not with signs. Despite abundant examples, which included his own mother, Bell stuck with that notion, which led to the idea that being Deaf was a burden, a marker of an unacceptable difference, and something to be eliminated through training and marriage restrictions.

Bell lived in a time of change: industrialization was creating systems emphasizing and transforming “normal” from mathematics to identity and proclaimed them as the path to a new age through eugenics. “Freak” became the umbrella term for racial, ethnic, developmental, gender, and physical differences. The tragic flaw enters: there is little indication that Bell was insensitive to suffering and inequality. Booth recounts several instances where he was distressed by racial discrimination. But, in a move that we all might be forced to confess, he did not recognize his own involvement in “a larger struggle between normalcy and difference, between saving and being saved, between empowerment and charity” (77), thus setting the stage for the tragic character’s downfall.

John Wesley was an admirer of the classics and early church fathers who struggled with these concerns. Today’s “nothing about us, without us” was not yet a motto, but concerns that those on the margins should be heard are clear from his writings. He famously “consented to be more vile” – to change his ways in seeking inclusion. Sadly,  Bell followed the thinking of many in his time who saw defects as something to be eliminated rather than embrace more social models and accommodation. Today the struggle continues: do people who are different have “special needs” or functional requirements? Are they included in leadership, or are they a target group (ministry with or ministry to)? Is a difference a weakness to be hidden? As the author notes, does empowerment come through assimilation or recognizing and honoring diversity? We still struggle, which is why the classics are still with us. The new miracle, as Teilhard de Chardin wrote, will come when we harness the energy of love, the love that was central to Wesley.  

Normal abnormal disclaimer: much to the chagrin of various greedy corporations, I borrowed this book from the Indianapolis Public Library, and even though they no longer charge late fines, I did return it on time.

 

 

 

Beep!

Bonnie Sherr Klein, Beep Beep Bubbie (illustrated by Élisabeth Eudes-Pascal),

Vancouver: Tradewind Books, 2020 (ISBN 978192689023)

Am I reverting to childhood? After enjoying Doorkins the Cathedral Cat, now I’m reading another children's book and enjoying it, too. But then, in Matthew 18, we are told that Jesus of Nazareth said we should be like children. Full beep ahead!

It’s a charming story. Bubbie is the grandmother of two siblings, Kate and Nate. She arrives for a visit on a new scooter that beeps a lot. The group rides away on the bus to a market. Here they have a great time (told in story and art).

Along the way, there’s a lot to think about. The children face their fears and deal with them. At first, Kate is afraid that Bubbie has changed by using the scooter. But as the story proceeds, Kate learns that the scooter, like all mobility devices, is a helpful tool. The person using it is still the same beloved character.

The children also learn some history. Bubbie tells them that “long ago, people who had trouble walking were stuck indoors” (6). Although the pandemic has interfered recently, people with disabilities are no longer expected to stay at home and hide. Even the “ugly laws” and many other ableist restrictions have been repealed or removed—although anyone who tries to scoot or wheel around most areas will find that a lot of infrastructure problems remain.

For one infrastructure concern, there’s riding the bus, with all of its steps. No problem, the children learn, as the bus has a ramp. Some of us who’ve had a lot of public transit experience will be happy to learn that the ramp works and the operator knows how to use it. When the group gets on the bus, some some people complain that they have to move to clear the access space. Remarkable, isn’t it, that we also have to clear able-bodied parkers and whatnot out of accessible parking spaces.

blocked accessible space

At the park, other children are shown using wheelchairs, and the text states that they make friends. After playing and enjoying the market, they return, where there’s another history lesson. At home, Kate starts reading and learns about Frances Willard, who named her bicycle Gladys. In a sign of acceptance, she asks if they can name the scooter Gladys and decorate it.

In the end, this is a wonderful story about learning, one that points out many dimensions of disability and the effects of accessibility. Go Gladys!--and the next time someone asks if I want a bicycle horn for my wheelchair, I may say yes.

Disclaimer: I was provided with an electronic copy of the book in response to a call for reviews on the Disability Studies in Humanities group.

Opening prospects

Lana Portolano. Be Opened!: The Catholic Church and Deaf Culture. Washington, DC: Catholic University of America Press, 2021. 336 pp. $33.66, paper, ISBN 978-0-8132-3339-0.

The author describes this book as a Deaf pilgrimage: a hearing person’s overview of history, Catholic Deaf culture, and language. Her interest was sparked by adoption of a Deaf child. In a parallel of the path of many parents of children with any disability, her entrance into Deaf culture was without any background, personal experience, or guidance. To her credit, rather than assume that she knew the child’s needs, she pursued an informed path and then shared it with us.

The title is drawn from a pericope in the Gospel of Mark, where Jesus cures a Deaf man by saying, “Be opened!” These words become a recurring theme in the book, a point of both critique and a prospect of hope. Portolano notes in opening the topic that the baptismal ritual once stated that the purpose of the sacrament is to touch the candidate’s ears so as to receive the divine word. When applied to the Deaf, this reflects an attitude of ableism, in common with many religious uses of disability metaphors. It also reflects attitudes that the condition requires medical or other intervention, rather than being a social difference that requires cultural adjustment. The need for such adjustment becomes, throughout the book, a call to the church and other social institutions to change their ways.

The book is divided into two parts: the first, a chronological narrative that is primarily organized geographically, and a second that covers more recent events, concluding with future prospects and needs. A central development in this history is the development and acceptance of sign languages, which in turn supports a Deaf culture. In turn, that acceptance becomes one aspect of recognizing disability rights. It is also essential in the development of a friendlier theological stance.

The nature of disability has been a long-standing religious issue. In the traditional medical model, it is considered a deviation from normal, animpairment that needs to be corrected. Theologically, these deviations have often been considered a recompense for sin. So it is not surprising that Deaf advocates have maintained that they are not disabled, but are a cultural minority. More recent social models cite deficiencies in attitudes and infrastructure, such as the lack of physical access (e.g., ramps, elevators) or, as is often the case here, the lack of captions or use of signed language. As this social model has gained ground, theologians have come to emphasize this approach as respecting diversity in creation, not deficit.

At some points, the chronological narrative is a challenge to follow across the geographical lines. However, there are common themes, one of which is sign languages. With a long history, they were a tool that opened the door to Deaf education. But they were also an oral tradition in an increasingly text-oriented world, and thus much is lost. The main narrative begins with sixteenth-century Catholic schools. One will find familiar figures here, such as Laurent Clerc (1785-1869), who began his religious life in the Catholic Church, and many who are obscure. One will also be reminded of social and political differences. With Clerc as an example, after some early work in England, he met Thomas Gallaudet (1787-1851), who invited him to the United States where he established a nonreligious public school. The story of Roman Catholic developments is intertwined with others, particularly among Anglicans and Methodists, whose work often predated that of Catholics. Another concern is that Deaf people are scattered, and only recently has technology been able to bridge this gap. Thus, in a manner similar to Black churches (as noted by Eileen Southern in The Music of Black Americans, 1997), these institutions often became community bases for Deaf people and denominational boundaries were secondary. Another aspect is that in the United States, government-funded schools became common by the mid-nineteenth century. Although nominally disestablished, they often had strong Protestant leanings, obscuring the work of Catholics.

Theological issues are also part of the story. The passage in Mark is the only place where Jesus communicates with a Deaf person, which he does by cure. Some take this as an instruction to reject sign language—but the author protests: they have not read the story carefully, as it implies the use of signs to summon the man from the crowd. A similar situation exists with statements such as “faith comes by hearing” (Romans 10.17). There are also stories of reversal: St. Francis de Sales, who would be named the patron saint of Deaf people, was friends with a Deaf man named Martin and learned signing from him. When a nobleman asked Francis if teaching the young man was worth the effort, and if it would not have been easier to pray for a miraculous cure, Francis replied that he had learned so much from Martin through their friendship that it never occurred to him to ask God to make Martin a hearing person for his own convenience.

The theological explanations also include points that may not be obvious to non-Catholics, such as a requirement to use valid forms or words during the Mass and absolution. Because of this, early Deaf candidates for orders spent decades in limbo, awaiting rulings from Rome. This began to change with the Second Vatican Council, 1962-65, whose approval of vernacular languages seemed to clear the way for sign languages, which by this time were recognized as full languages. 

As social movements produced disability legislation, the church found a path for participation through its long-standing social justice tradition. Coupled with the waves of disability rights movements and legislative affirmation, this has brought back the question of disability vis-à-vis cultural difference. A possible resolution seems to be in the social model coupled with liberation theology, a movement that began among Latin American Catholics. One example is the ecumenical Claggett Statement of 1985, which states that Deaf people do not need to be cured of an impairment but do need relief from social exclusion and cultural oppression. It also charges churches to end the practices of charity that portray their objects as disadvantaged, to consider differences to be gifts, and to develop forms of worship that convey the Deaf culture.

These trends are reflected in the ongoing flowering of Deaf culture after Vatican II, spurred by technologically aided movements and cross-cultural understanding. A result has been the emergence of a “Deaf World” that identifies a diaspora with a bond of deafness that transcends other cultural difference. Building on this idea, Deaf members have established networking associations and become leaders, pastors, and role models. Yet, noting that many see the church as a “hearing institution” that overlooks them, the author lists still-needed changes, such as national offices, seminary training, and more use of modern media. Direction is needed in effective delivery to both hearing and Deaf audiences, Eucharistic prayers and liturgy in sign language, and theological questions on the use of female or non-Catholic interpreters.

I find hope in this book as well as challenge. Susan White notes in Christian Worship and Technological Change (1994) that a historic theological focus on texts overlooks technological advances (recall that Portolano cites textual focus as a reason for loss of Deaf history, which is generally an oral tradition). If we turn with open minds, using visual arts to relate stories through such media as statuary and stained glass windows would be comparable to encouraging the use of video screens and social media today. At the same time, technology is always a two-edged sword: technological devices such as cochlear implants are often viewed as an attempt to erase the culture, so the future remains open.

As a postscript, the book has a useful companion website, https://www.icfdeafservice.org/beopened, with examples of sign language and liturgy. No log-in is required to use it.

Also published at H-Net Reviews.
This work is licensed under a Creative Commons Attribution-Noncommercial-No
Derivative Works 3.0 United States License.

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… just a setting on the dryer

 A review and response to Jonathan Mooney, Normal Sucks: how to live, learn, and thrive outside the lines (New York: Henry Holt and Company, 2019).

What does it mean to be normal?

This a meme I used to introduce the topic “the fraud of normal” when teaching 20^th century historical developments. It often drew the interest of the diverse lot of aspiring artists in the class.

Mooney starts his exposition much as I did—noting that “normal” is only a fiction of statistics, and while the idea has been around for some time, it gained particular prominence at a historical time of  social change. The idea of normalcy has a history, and much of it is related to the history of ranking and stratification that has created a caste-effect in modern life. Both of these have roots and effects in emerging divisions in the middle of the 20^th century, and they continue today, reaching far beyond their origins as distinctions become accepted standards.

One often hears the saying “history is written by the victors,” and so are social standards. In a parallel to history, “normal is what is called normal by people who are called normal” (36). That leads to an inherent bias, which is why I challenge those who talk about “history is there whether you like it or not” to include more than the accounts of the winners in their statements.

 “Normal” is a form of self-justification from a group holding power. One of the results of this phenomenon of self-justification is the casual use of various slurs in everyday language, which leads to a lack of recognition of the reality of the problems from many in a place of privilege (for an example, see “The harmful ableist language you unknowingly use”). In a steadily compounding spiral, society compounds its habits of overlooking the contributions that people who are different bring to the table.

The effects of this enforcement of “normal” have been devastating, resulting in invisibility and dehumanization. The idea of eugenics grew from its fascination with removing difference, coupled with quantification movements (i.e., statistics that measured deviation), all focusing on isolating and labeling some people as a problem.

To learn more about the effects of any change, one should ask what life was like before the event. In the case of normality, historical documents show us that differences were once celebrated, perhaps with an attitude that they encompassed touch of eccentricity or oddness, but accepted as part of a diverse world. It was the rise of the field of statistics in an increasingly scientific-oriented society that gave an impetus to the idea. By 1914, 36 states had institutions that segregated anyone considered “feeble-minded” and by 1930, 41 states banned non-eugenic marriage or practiced forced sterilization. In 1935, such ideas became the law in Germany. We know how that went, don’t we?

The idea of normal is also where the popular modern inspiration porn slogan of “overcoming” disability comes from. It proclaims that enough heroic effort can do anything, which led the late Stella Young to critique the popular aphorism that “the only disability is a bad attitude” as she reminded us that “no amount of smiling at a flight of stairs has ever made it turn into a ramp.” 

This book is highly recommended (along with Mooney’s Facebook page)as another example of the new day for many that has come with the growth of the civil rights movement and its social theory of disability: what disables me is not anything of myself, but the environment. With that, the theological world has slowly begun to see disability, like any difference, as an element that is to be honored as part of the divine plan. “Am I normal? No, I’m not. No one is” (216). There is no one way to be a human—to be human is to be diverse.

Disclaimer: once again, I have irritated Amazon by borrowing this book from the Indianapolis Public Library. As per agreement with them, I returned it within the specific time period, and hope that others are now appreciating it as well.

 

 

 

Being there, being human: Lenten thoughts

A review of and reactions to Judith Heumann, Being Heumann: an unrepentant memoir of a disability rights activist (Boston: Beacon Press 2020).

From 1953 to 1957, a television show featuring Walter Cronkite sought to re-create historical events as if one was present under the title “You are there.” I recall seeing some of the re-broadcasts of this show in my early school years. I had much the same feeling of presence of those school years while reading Being Heumann: being segregated, repeated examinations, denials of needs for no good reason, and gradually learning that I was different. 

Hers is a story of self-discovery and a chronicle of the development of the disability rights movement. I am several years younger than Heumann, and an early beneficiary of her work. As is the case when I reach beyond the textbook's skimpy coverage and take extra time to teach about the civil rights movement, it is my hope that the younger generation of people of color and people with disabilities will come to understand how things were, where they have changed, so that in keeping with Santayana’s maxim, they may continue in a path of thoughtful change.

 

Like Heumann, I came to understand that my presence wasn’t always welcomed by school administrators. Physical disabilities were equated with mental disabilities, and there were struggles to be mainstreamed. I was often dragged from class to take this or that test. I also sensed a change of tone when we moved across town and entered a different school, but hadn’t heard about the early federal laws that required basic forms of inclusion. As she writes, being first is often difficult, and there was a need to prove that one could do it—if you were allowed to try. Many were more comfortable with exclusion. Even today, the idea of making environments more accessible seems to escape many people.

Times change, but it may seem that some values do not. To the parents of a previous generation, disability was viewed in terms of President Roosevelt: something to be hidden or a medical condition to “overcome.” Although changing slowly, the social model now sees the issue as one of access and design. But disabled people are still knocking on doors where we aren’t welcome, or are regarded more as a fire hazard than as people.

 And thus began a cycle. A lack of inclusion leads to invisibility. Invisibility leads to a lack of planning for inclusion. Lack of inclusion leads to being ignored. People who are ignored don’t exist. Ah, but there was one place we could be seen—telethons! Helpless little children in need of charity, which meant that others knew best what we need. As she relates, grasping this cycle produced an understanding of a need to demand attention, which took the form of occupation of offices, and, eventually, recognition of disability rights not as a medical matter but as civil rights. Heumann was a leader in this effort, and her story is well-told and captivating.

Michel Foucault reminds us that those who create “normal” often have unspoken or assumed standards, and enforce them by punishing deviance. In my city, we have just seen a flagrant demonstration of this principle. Over the weekend, a local art museum advertised for an executive director who would, among other things, maintain its “traditional, core, white art audience.” There's been a lot of media spilling of ink and electrons. There may be a protest: will it be accessible for once?

As Heumann notes, disability and race are linked, for the disability rights movement grew from the civil rights movement, and the two have always drawn on each other. Both are opposed to many of the norms that lurk beneath the surface. This construction of this ad reminds me that the standards of “normal” still stand. It also reminds me of students who didn't pay attention in writing class and tried to cover up that they didn't care when we covered inclusivity. It reminds me of the cheap (and ineffective) overlays that supposedly make web sites accessible to people with visual disabilities. Not only do they not work, they display to the world that you don’t care enough to do the job properly (for another example, see an article by David Perry). 

As we enter another season of Lent, there is yet a need to examine these assumed and unspoken norms. “Disability is a natural aspect of the human condition.… We are all human. Why do we see disability differently from any other aspect of being human? (196, 202).

Disclaimer: I borrowed this book from the Indianapolis Public Library in Kindle format, so it was returned automatically on the due date. Amazon doesn't publicize this very well, but a Kindle reader is available (free) for most computers and phones.