So Compassionate It Hurts

Tzemah Yoreh, So Compassionate It Hurts:  My Life as a Rabbi on the Spectrum. N.p., Modern Scriptures, 2022. 

“Nothing about us, without us”

These words have long been the disability community’s mantra. But even now it is routine for anyone living with visible conditions to have “experts” tell “us” what we need. So it is hardly a surprise that neurodiversity, being less visible, is one where it is still routine to brush aside the thoughts of those who live with it. “We” are categorized, labeled, given diagnoses of what is “wrong” and needs to be “fixed.” We are rarely asked what would really help, and even more rarely is there any acknowledgment that we have strengths and abilities. 

Rabbi Yoreh’s story begins with a story of self-discovery that is frequent for many of today's adults: knowing they are different, but not having good descriptive terminology, all the time seeking to understand differences. In the process of exploration, he upends the medical model of a deficit to be fixed and brings us to a social model of having much to contribute. The book is his invitation to join a quest to learn if his success is “because of” or “in spite of” the gifts which autism brings (35).

 

Central to discovery is the charge to love your neighbor as yourself (Leviticus 19). To the author's mind, surface answers are not sufficient. He finds resolution by realizing that the task is impossible, rather is it one to strive for. He finds strength from living in a world that has not been built for people like him, which has resulted in better realization of the obstacles that others face.

From that realization he finds other characteristics: a sense of fairness and equality coupled with an understanding that while needed, authority is often balanced toward those with various advantages. He is not a good liar, which is a “freeing” gift (40). But while freeing, this gift has another side: a heightened sense of conflict and of cognitive dissonance. In the end, it creates compassion for those whose sense of equality leads to understanding and kindness in creating space for those who are different.

Another step is the perception that neurodiverse people wish to be left alone, and thus, we hear again, that they lack compassion. The inside reality, however, is that social interaction is draining due to the need to figure out what others are really saying in a given situation. He gives an analogy to expending calories like an Olympic distance runner, but being unable to sweat, and as a result, his CPU overheats. One can love an activity but need breaks. This, in turn, leads to a need for patterns in life—with the result anything out of the pattern is a stress factor.  

Finally, a theological note (and complaint about history education). Many studies link autism to atheism or agnosticism. This is, as I read it, not so much a lack of belief as an inability to grasp the idea of a great otherness, stemming from that pragmatic nature. The early church “fathers” include a school of apophatic theology—one that is very similar, but recognizes some kind of source to all, however inconceivable. Our systems don't do a good job of transmitting ancient wisdom, leaving us to continually re-invent the wheel! 

In the end, whatever chasm lies between understanding the world of neurodivergence and neurotypicality (whatever that might be) and one's idea of the divine, I am sure that she is thrilled with the rabbi’s mantra of “being as kind as possible” (104). If more people had such a level of compassion (or listened to those who do), this world would be a far better place.

Disclosure of Material Connection: I received this book free from the author and/or publisher through the Speakeasy blogging book review network. I was not required to write a positive review. The opinions I have expressed are my own. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255.

Rabbi On The Spectrum (Facebook) / Author's website

 

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.