Disability Justice in Education and Healthcare Settings: Nothing About Us Without Us.

Educational Objectives

As a result of this 90-minute workshop, participants should be able to:

  1. Define the social model of disability and how it applies to their present setting
  2. Describe the importance of disability justice in a system, for students/patients/providers/admin (i.e. everyone)
  3. Recognize basic spiritual needs in an intersectional lens with a disability justice starting point
  4. Assess spiritual support needs in a setting when access and accommodations are not prioritized

National Joint ACPE/APC Annual Conference May 10-12, 2022

Presenter: Rev. Erika Sanborne, MA, MDiv, PhD Candidate (Sociology @UMN)

transcripts (txt) for those who need them:

For Those Attending the Live Session on Tues. May 10, 2022

Welcome! When you arrive on May 10 for the live session, please do what you need to do to be comfortable, bring whomever you wish to join you, and if you are able to TYPE, be prepared to type a few brief responses into the “live Q&A” area throughout the session, or to have someone with you who can type, if you would like to participate.

This website has been designed for sharing with others. Everything should be accessible – if not please let me know and I will address anything that is not accessible that is my creative work – i.e. my PowerPoint, my video presentation, and this web page. My hope is that you may be inspired from our time together to take disability justice with you and into your respective settings. Share this website with individuals freely. If you’re going to share in a group – i.e. projecting in a classroom or organziational setting, please read about licensing.

Welcome! I am strongly against the gatekeeping of knowledge, so I have made this website a shareable resource. Please use it for good. My hope is that this can support anyone’s efforts to bring disability justice into healthcare and educational settings. A nonexclusive license is hereby granted for use of this presentation (to include the video and anything else on this website) for individual persons’ learning. If you are using these materials as part of a workgroup’s education, course work, continuing education, or in-service training, please license the materials. Licensing info is below.

For Everyone, Including Those Not Attending the Live Session

For academics looking for my current work

Please note that this is not your ordinary conference presentation, for which the target audience is other researchers. This joint national conference is largely attended by practitioners – i.e., chaplains and allied healthcare professionals, and those who train and supervise them. This session was billed as a “workshop” and intended to educate providers on disability justice. It’s not a research talk. If you’re looking for my current research, connect with me at the University of Minnesota.

Social Model of Disability

Main Ideas

Disability is inherent to the social world. Disability is not inherent to a person. People have differences and impairments that may or may not result in disability depending on their interactions with the social world, where physical and attitudinal barriers produce disability.

line drawing of eyeglasses

Suppose that you are very myopic and you live in the United States today, where you can acquire corrective lenses or eyeglasses. If you are able to do the things you need to do wearing those lenses, then you would not be disabled by myopia in your present social context, even with such visual impairment. Imagine if you lived in a time and place, or in a part of the world today without access to healthcare or eyeglasses. Then, the same visual impairment in the context of a society that does not provide access may lead to disbility, wherein perhaps you cannot see well enough to shepherd or farm or sew or cook. There, you may be disabled whereas here in the U.S. today with your eyeglasses, you are not disabled. Notice that the difference between your being disabled and your not being disabled has nothing to do with your body and everything to do with your interactions with the social world.

Disability is not internal to people’s biology but rather to the social systems in which people may live, work, play, study, heal, and pray.

This is known as the social model of disability. It’s grounded in a definition of disability established in the 1970s by disability justice scholars, born out of the Black Civil Rights movement in the U.S., and institutionalized by the United Nations in 2006, with the agreement of 168 member states, and it is the central topic of Part 1 of this workshop, which is all about reframing what we think is the problem. And this is really important because that will determine what we think needs to change in order to make things better.

Disability Justice

Main Ideas

Disability justice always acknowledges power, privilege, and access. Disability rights and disability justice are night and day.

disability care line drawing

The Disability Justice Framework (Patty Berne, Mia Mingus, Stacey Milbern) is useful and has ten principles:
1. intersectionality
2. leadership of those most impacted
3. anti-capitalist politics
4. cross-movement solidarity
5. recognizing wholeness
6. sustainability
7. commitment to cross-disability solidarity
8. interdependence
9. collective access
10. collective liberation

I think the first question of disability justice is asking yourself this question: Who is not here? That question is about access, and the honest answers are about power and privilege, and those answers will generate your “to do list” if you want it.

Spiritual Needs in an Intersectional Lens

Main Ideas

If I were to categorize causes of spiritual pain, broadly, I come up with three wide containers: generally-expected stressors, critical incidents or violence, and oppression. I think our established chaplain assessments and approaches can work well for the first two categories. In one way or another, we listen, validate, find out more, respect the patient’s own meaning making systems or faith traditions, and figure out how we can help them to best connect with some of those resources in order to cope with their crisis, change or loss. And we might do some extra care and referrals for the trauama as needed.

disabled worker line drawing

When the cause of spiritual suffering is oppression, which is always intersectional, I suggest that it’s different. Our ordinary approaches to spiritual care and assessment need to be revisited. Oppression is different. And ableism is oppression that privileges the protection and care of certain bodyminds while excluding and deprioritizing other bodyminds. A disability justice perspective reminds us that multiply marginalized people are the most oppressed, and the most in need of access, solidarity and care.

Can you assess spiritual needs using your existing assessments when the cause of spiritual distress is oppression, and they are not lacking any known spiritual resources? I suggest that what such a person needs for their spiritual well-being is justice, and anything less is just window dressing in front of the biggest elephant that can possibly fit in a room.

When Access and Accommodations are not Prioritized

Main Ideas

Well, I’m not aware of any educational and healthcare settings that do prioritize access. Some places try to provide accommodations, which is a lower standard as accommodations tend to refer to the legal things required and sometimes enforced due to ADA and related policy. In general, in most places, access is not prioritized and assessing spiritual support needs is about justice which is access which is solidarity.

hospital line drawing

It’s only within a more Western, capitalistic (i.e. production-oriented) ableist social order that people’s needs even get characterized as burdens rather than as opportunities for generative things! (Read more from Mia Mingus + access is love.) And, you know, with accessibility, that’s spiritual care because we are now talking about interdependence and our relatedness.

Why does nobody question the expense of purchasing all those chairs in every cafeteria? If you’ve never questioned that expense, or thought of cafeteria chairs in this way, that’s because of ableist social norms that lead you to believe that certain bodyminds unequivocally deserve care and support, and certain other bodyminds are a burden and a nuisance, and something we can ignore and certainly do not have to address in our budget. We. Have. All. Been. Socialized. to privilege nondisabled experiences and needs. Disability justice challenges our socialization.

As spiritual care providers and educators, you have an important role in the well-being of many people. Don’t accept ableism. Always ask who isn’t here and then respond to what you learn about yourselves. And insist that your setting become a place that does prioritize access, where everyone deserves to be cared for, because of who they are, not in spite of it.

Footnotes

These lists are incomplete, as is this website, all of which is intended as a curated list of things to serve as starting points for your learning.

A Word on Language

I use identity-centered language (i.e. disabled people), which is common but not universally preferred among disabled people, disability justice advocates and critical disability scholars. The main alternative option is person-centered language (i.e. persons with disabilities). I also use the term crip favorably, comfortably, and proudly, as an intentional act of reclamation as those of us who prefer identity-centered language tend to do. While my strong preference for identity-centered language is to emphasize the social construction of disability, I also respect the choices of those who prefer person-centered phrasing for themselves. As with all identifications, practitioners will do best to ask patients/clients/students their preference.

Don’t Use These Words

when expressing your alarm or dissatisfaction: that’s hysterical, crazy, lame, dumb, insane, or r-word; is blinded by ___, crippled by ___, or finds ___ maddening

when expressing your solidarity with a cause: I see you, I hear you, I walk with you, I stand with you

Licensing

Everything is here on the website. No one is given permission to download the video and host it on their own. Anyone can play the video through this website. It is on YouTube for now. I might move the video to another video host but I plan to keep it available through this website. Individuals can access everything for free.

If you are using my materials in a classroom or for organizational training, to include CPE, you should license it for that usage. The fee is $60. That covers use for up to 100 people at a time for one year from the date of licensing. Once licensed, you can project this video in groups, classrooms, and small auditoriums to up to 100 people at a time for one year.

Please keep in mind that most labor in the disability justice sphere is uncompensated, and if you should license my work I expect that you will do that. Because I want everyone to have access to it anyway, I’ve chosen to make it available for free for individuals to access without licensing. So if you do not want to pay the $60 fee to license my work and support my labor, then you cannot use my materials in a broadcast or group setting, but you can still send individuals to watch the video and read the website on their own. That’s why I kept it public without a paywall. I feel comfortable with this balance, and ask you to not steal my work and use it outside of the scope of this license, okay? With any questions, be in touch.

About Erika Sanborne

Erika is an award-winning, long-time educator, who consults with individual faculty and administrators on how to meet their teaching goals. She is now also a population health researcher and sociology PhD candidate at the University of Minnesota, which means for now, she is a senior adjunct professor, a consultant, a research assistant, and a PhD Candidate, all at the same time. This has enhanced her understanding of the teaching and learning issues we're facing in academia today on all fronts.

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4 thoughts on “Disability Justice in Education and Healthcare”

    • Rev. Erika, my name is Kelsi Watters. I am a Chaplain Associate at Legacy Health and I am totally blind. I attended the APC conference and was able to listen to the recording of your session. It would mean so much to me if we could be in touch. I’d love to talk more about disability justice, the APC conference and accessibility issues I experienced there (like you, my emails were ignored). The annual APC celebration was a complete disappointment because it was inaccessible and not inclusive for sight impaired people. As a new BCC I was looking forward to hearing the names announced but they only appeared on the screen. Anyway, I really would love to connect.

      Reply
      • Hi Kelsi,

        Thanks so much for your note. I’m glad you were able to access the audio of my session. I’m not surprised to learn of your experience outside my session at the 2022 joint APC/ACPE Conference. Although I provided audio descriptions of visuals on my slides, there were no instructions telling me to do that from the conference. For another form of accessibility, I had also provided complete and correct captions throughout my prerecorded session, but at the conference, they overlaid my video with their automatically-generated captions, which were wrong, and their tech support person did not have the capability to turn them off. So they even interfered with some of the accessibility features I tried to provide in my session.

        And as you heard in my session, they ignored my emails in which I asked about accommodations for myself and for attendees. So I’m not sure how I can help you directly, unfortunately, or I would be glad to do so. I’m especially sad to imagine the feeling you must have had anticipating hearing your name announced among the newly minted board certified chaplains, only to realize that even that was not accessible. I’m so sorry that happened to you. Ableism is exhausting. When it comes from organizations to whom you may have paid considerable funds in the form of membership dues and conference registration fees, being treated like this can feel extra. I’m so sorry.

        I’m sure you know this, but you have legal rights to this access they are denying you. I’d encourage you to speak with a disability rights lawyer. Both the APC and ACPE websites are entirely inaccessible, which I also told APC about in my March 2022 email that was ignored, as was this conference, and as is their choice to ignore emails they receive from disabled chaplains inquiring about accessibility. We are the parties with legal rights in these matters not them, and I suspect there’s a lot more of us. In general, from what I understand, organizations that choose to blatantly ignore disabled people count on disabled folks being too worn down by all the ableism to have any time and energy left to fight for their rights. If you haven’t been worn down too far yet, I’d encourage you to talk to a disability rights lawyer. Their emails won’t be ignored like ours are.

        Several chaplains who were in my session have shared their disappointment in the respective organziations, and so perhaps they might communicate something effective, but I don’t know for sure.

        For learning more, the links on this site are all good starting points. I believe this website (I mean this exact single page we’re on right now) is properly coded and accessible but please let me know if I’m wrong so I can remedy anything that’s not.

        Mostly, please know that you are not alone. I’m also going to send you an email.

        Erika

        Reply
        • Hi Erika, I really appreciate you reaching out to me here and via email. Even though you may not be able to help me directly regarding the APC conference situation, it is just simply helpful to have a somebody else at my table who understands, so to speak. I am hopeful that I can connect with other chaplains with disabilities. Sometimes that solidarity in itself is healing and offers some energy for the weary as well as validation and support. I have never reached out to a disability rights lawyer, so I’m not quite sure what that process would look like or how much it would cost. Also, your presentation was I think the only one I attended that specifically mentioned sight privilege and was so mindful of accessibility for non-sighted folks. I haven’t looked at all the links on your website yet, but as far I have found it to be very accessible and user-friendly. Thank you for connecting! Kelsi

          Reply

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