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.

Still marked

Still marked: a review and response to Jenifer L. Barclay, The Mark of Slavery: Disability, Race, and Gender in Antebellum America. Urbana: University of Illinois Press, 2021.

In 1857, a writer praised the New York Daily Times for teaching “coldly and calmly” the “indubitable fact” of white supremacy. As his opinion letter continued, he noted the need for “wardship” of those incapable of self-government, which included infants, disabled people, and people of color (J. Buford, “A Southerner’s Opinion of the New York Day Book,” New York Daily Times, 26 January 1857, 14).

The “indubitable fact” and its reach is a reminder of Douglas Baynton’s observation that, as a culture of “normal” was taking root, one response that might be heard was that one was not disabled and therefore ought not to be the object of discrimination—but not to challenge allowing discrimination.* At a time when many social institutions and assumptions were under scrutiny, various standards were emerging, with results that are still with us. Among these were supposedly Christian notions of sin as a contributor to difference. Although starting to give way to developing science and concepts of what was “normal,” prevailing notions held back from a clean break: judgments continued a long-standing practice of ascribing various aspects of disabling conditions to unrelated occurrences and then used them to justify oppression and inequality. In turn, such uses contributed to notions of disability as defective or abnormal instead of aspects of diversity.

Economics is the first topic covered. The author shows how disability has led to a presumption of lack of economic value. Under slavery, with its poor working and living conditions, accidents, and disease, an image of uselessness therefore became associated with disability. This idea returned in Nazi Germany to justify the murder of disabled people.

The next topic is medical advances, some of which led to what we now refer to as the medical model of disability, one which views differences as errors or imperfections to be corrected. The people involved were viewed as feeble objects of charity (have you seen a commercial or telethon lately that portrayed disabled people like this?), and provided ground for the view of slavery as a paternalistic “positive good” that took care of those unable to rise higher.

If you have seen one of those commercials or telethons, have you also seen presentations about how inspiring someone is because they have overcome the obstacles placed in their way by an ableist society? Also known as “inspiration porn,” such coverage is an almost-oppose to the portrayals of uselessness and pity, but they are just as dangerous. Rarely are the social and physical roadblocks noticed when praising someone for “overcoming” their disability.

In many settings, these attitudes of uselessness lead to subversion: slaves and disabled people gather unnoticed and largely unmonitored, engage in various kinds of aid, whether practical or creating a sense of stability and social togetherness in a liminal setting. St. Paul’s paradox of strength in weakness became a recasting of weakness as strength, transforming the classical trickster of myth into a powerful person with qualities of great spiritual strength. Disability is capable of being subversive when it gains attention. However, it’s generally minimized or shut out. Ever wonder why?

Thus arises the author’s point that one failure of abolitionists who crusaded against slavery was not severing the link of racism and ableism behind social hierarchies (150). In an example of the “law of unintended consequences,” these anti-slavery arguments used ableist language to reinforce the need for perceived benevolent guidance, and outsider-directed care. This continued with speech about a deformed nation that reinforced a stigma of disability, and as noted, contributed to inspiration porn and obstacles today. Sympathy and derision went together to minimize and marginalize anyone who was different. Aided by the then-new art of photography, freak and minstrel shows worked with photographs of slave treatment to create sympathy without empathy or improvement for those in need.

Disability is also a “marker of hierarchical relations”— just as slavery, forged in distinctly racialized ways throughout the antebellum years—shaped and defined power dynamics. But what persists is not an end to hierarchies, but new paths of control. Disability continues to provide images and symbols of such control—a person perceived as successful has traits associated with bodily ability and seeks to reinforce such stereotypes. People whose bodies or minds do not match the standard are judged as unable, unintelligent, and irrational. They are shut out of inaccessible locations, forgotten when podcasts are not captioned, overlooked when their minds take a different approach, and only grudgingly granted an occasional presumption of competence. Still subversive, still a threat. Still marked.

 

* Douglas C. Baynton, “Disability and the Justification of Inequality in American History” in Paul K. Longmore and Lauri Umansky, The New Disability History: American Perspectives (New York: New York University press, 2001)

Disclaimer: I borrowed this book from the Indianapolis Public Library, promising to return it within three weeks, which I did, even though they no longer threaten to fine late returns. In this I was aided and abetted by borrowing it as a Kindle book, which is automatically returned.

 

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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Disability Pride Month—Toward a Bottoms Up! theology of disability

A review and reflections: Joerg Rieger, No Religion but Social Religion: Liberating Wesleyan theology. Nashville: General Board of Higher Education and Ministry, 2018.

O wad some Power the giftie gie us

To see oursels as ithers see us!

It wad frae mony a blunder free us….

- - -

“To A Louse,” Robert Burns

Honored more in the breach, this popular saying reminds us that a first step in approaching theology is to remove one’s own “blinders” so that we may see the “structures of sin” that surround us. To make his point, Rieger tells a story of a presentation explaining that John Wesley’s theology is a reversal of top-down religion. At a faculty meeting, the hearers seemed unable to grasp the problem. At a meeting of disadvantaged high schoolers, the message was clearly understood, and discussion added to his store of examples.

This story came to mind when I saw a notice promoting a “freedom” rally against critical race theory (among other things) in a neighboring suburb. The notice was unravaged by the onerous demands of fact. For those who have ears and will hear (or read), this theory is an historical process that suggests  we look at formative principles, examine foundations, and learn how they have affected later developments so that we can set out ways in which lasting change may be created, much as Isabel Wilkerson does in Caste. 

From such analysis, we find links that couple the foundations of the social model of disability and critical race theory. One of Rieger’s principles in this book is often mentioned in discussing disability theology—the unity of the body of Christ, and, in particular, the need of each part for the others, derived from 1 Corinthians 12:21 and Ephesians 4 (the RCL Epistle reading for the 18th week in Ordinary Time, which in 2021 falls on August 1). The way we live, and how we deal with disadvantaged people, does matter. 

This also reminds us that, God is not at the top of an hierarchy, as most theology would have us think. Theology is the work of the people, asking where God is in our world—this is the meaning of kenosis (Philippians 2.7). Wesley set us an example, ministering to the lowest in the society of his day. It was not a patriarchal act of charity, but one of solidarity and refutation of power structures.

The ultimate expression of solidarity is inclusion. One form of inclusion, following Wesley’s footsteps, is ministry with, not to. It is not bombarding those thought to be outsiders with weaponized “truth,” but hearing the call of the disadvantaged and realizing that we are all one. As Rieger writes, “deep solidarity does not imply that we forget about our differences; the opposite is the case: deep solidarity enables us to find ways to make use of our differences for the common good” (78). 

Disclaimer: I borrowed this book from the Indianapolis Public Library and thereby agreed to return it in three weeks, which I did. Joerg Rieger was my German examiner at the Graduate School in Religious Studies, Southern Methodist University, and impressed me by being perceptive enough to have me read about Wesley's social thought through German theologians. Maybe that's why I passed on the first try.

… 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.