Disabled Deputy On a Roll

I became a self-titled Episcopal Church Geek as soon as I learned the proper order in which to extinguish altar candles, when I was 7-ish. My early days as an acolyte are blamed on my desire to be just like my closest older brother, who is five years my senior. But, once in, I was so enamored with being part of how church functioned that I never thought of leaving.

I was hungry for more. 

It could seem cult-ish to say I’ve never questioned my faith, but in all honesty that’s the truth. Because the norm in my religious upbringing was that I was encouraged to ask tough questions of God, the Bible, the preacher, our beliefs, rituals, and more. The thing that allowed me to never question my personal faith was the fact that I had permission to question everything about it. The very freedom that I could so easily walk away meant that I had a reason to find out why it was important to stay. 

I was 16 or so when I thought I wanted to be a priest, but it would take another 15 years before I would find my true calling as an Episcopalian. I’m still figuring out the whole priest thing.

This post explores some of the ways I am beginning to bridge my “in real life” disability and chronic disease advocacy work with my passion for helping The Episcopal Church truly welcome everyone.


From July 3-13, 2018 I was a Deputy to the triennial General Convention of The Episcopal Church in Austin, TX. We meet every three years to deliberate on our governing documents; create legislation about spiritual, liturgical, social and political issues (both inside and outside the church); and worship and gather. We are governed in a largely democratic way; we have a House of Deputies and a House of Bishops, both of which must concur on resolutions before they become part of our church polity, governance, and official involvement in world issues.

The Deputation (including alternates and spouses) from the Episcopal Diocese of Northern California. Image by Anne Clarke, courtesy Brian Baker.

I am no stranger to General Convention. However, this was my first as a Deputy. That means I was elected by the people of my Diocese of Northern California to have seat, voice, and be a voting member of General Convention 79 (GC79). If I had to compare the role of Deputy to anything else I’d say it’s something like being a US Congressperson, but on a smaller scale and slightly less dramatic. Sometimes.

And maybe a bit more fun. 

That is, if parliamentary procedure and crafty syntax are your cup of tea. 

GC79 was 12+ days of grueling, spiritually filling, life-giving/taking, humid-outside-frigid-inside, wheelchair-rolling Episcopal Church Geek Heaven. And I admit that I have no idea how to succinctly summarize it, the most taxing thing I’ve ever experienced since being a college-athlete-part-time-student-worker-full-course-load-honor-student nearly 10 years ago, long before I became disabled.

It takes a lot less to overwhelm me now. 

While we accomplished a lot at GC79, there were three four big accomplishments I was heavily involved with. Even though I couldn’t participate in activities like the Bishops Against Gun Violence Public Witness and the event at the Hutto Immigration Detainment Facility, I gave what I could in other areas.

1. You say you want a resolution? Well, you know…

My role as a Deputy began when I was elected in 2016. But it was January 2018 when I really began preparing for General Convention. It was homework time.

So I read the Constitution & Canons (C&C) of The Episcopal Church as any good deputy should. And I discovered a curious thing. Each use of the words ‘disabled’ and ‘disability’ in the Constitution seemed to infer that someone with a disability is incapable of being a leader in the church.

I’m disabled and I’m a leader, aren’t I? And I know a good number of deacons, priests, and bishops who are disabled. So I was confused. Was the Constitution saying I’m disqualified from leading as a result of being disabled?

Then I found several nondiscrimination clauses in our Canons that declare disability as a protected category that cannot be used to deny access to leadership opportunities, including the discernment process and ordination. 

Oh. Oh my.

Wait.

No, it can’t be.

Oh…my…

Our Constitution and Canons (2015) contradict each other! (someone please correct my grammar) 

(To be clear, the documents simply aren’t clear about what the definitions of ‘disability’ and ‘disabled’ are, so the reader is left assuming the meaning. Is this the stuff chancellors delight over?)

You have no idea how excited it made me, a church geek and policy wonk, to have found waldo discovered the thing everyone should know, and OMG I have to tell everybody and their cousin immediatelyI was certain that pointing out this one discrepancy in our governing documents would change everything about the church in one fell swoop.

Just kidding. But the thought excited me.

And when I get excited I become a strict idealist and live in that reality until someone brings me back down to earth. I know, it can be unhealthy. I’m working on it.

So I told some people about what I had discovered. Then I waited for someone to tell me what to do. And I waited. And waited. Because I didn’t want to be too annoying. And then I began fretting in April. It was up to me to just do the thing.

So after reaching out once more for help and getting some answers, I wrote resolution D048: Review of Disability Language in the Constitution and Canons, which passed with flying colors through the Constitution and Canons committee, then breezed through on both houses’ consent calendars. Without amendment, I should add.

Score:

Charis ⇒ 1

Constitution and Canons ⇒ 0

2. “That Still Small Voice” – Testifying in Committee Hearings

The biggest chunk of work at General Convention happens outside the legislative sessions of each house. Resolutions are written and proposed, assigned to committees, then heard, deliberated, amended, substituted, and/or sent to each house with a recommended action (reject, adopt, adopt with amendment, adopt substitute, refer to an interim body, or take no further action).

It is in the context of committee hearings where people – and not just Deputies – may testify their personal stories and offer thoughts to consider for when the committee later deliberates. Testifying also happens during legislative sessions, but it is in the committee hearings where stories have a more casual feel and people’s stories can have a greater influence on the composition of resolutions.

I was part of the small-but-passionate, unofficial disability and D/deaf cohort that began group-texting early on about resolutions, hearings, accessibility, and various ableist micro-aggressions. First it was three of us: myself, Karma Quick-Panwala (Alternate, Diocese of California), and Sarah Watkins (Alternate, Diocese of Texas). Then it grew to four (with KC Robertson, a seminarian from the Diocese of Los Angeles), then five six seven of us, including several members of the Episcopal Conference of the Deaf.

We held impromptu “committee meetings” at intersections and in the exposition hall. We texted late at night about amendment wording and process. Original authors of resolutions had neglected to include ‘disability’ in their lists of marginalized groups; for example, any time “gender, race, class, sexual orientation and gender identity” were listed, we were missing. So it was up to us to remind committees to amend resolutions to include us. We split up countless resolutions among ourselves so we could testify in as many different committees possible to ensure resolutions included language about people with disabilities and Deaf people. 

Many of these committees just needed a nudge in the right direction.

But there was one specific resolution I needed to speak to from a very personal place: C037: Call to Respond to Opioid Epidemic.

The resolution called for awareness, education, training, and commitment to help those affected by the opioid crisis and offered several hands-on ways the church could help locally and worldwide (from training to administer life-saving medications to supporting policies to reduce access to opioids). The focus was solely on people addicted to opioids, without mention of untreated or undertreated pain, lack of access to effective treatments for pain, or the lack of funding to find cures to long-term chronic diseases.

I arrived early to sign up to testify, nervous because I wasn’t sure how my perspective would be received. Half a dozen people spoke in strong support of the resolution before it was my turn. The testimony I gave (below) speaks for itself. To my surprise, my testimony caused the committee to make significant changes to the resolution, instituting wording I later emailed to them. “That still small voice” really did matter in this place, all because I was willing to share a perspective that hadn’t even been considered.

Disabled Deputy testifying
Testifying in the Social Justice and US Policy Committee. Image by Karma Quick-Panwala

Here is my testimony in the Social Justice and US Policy committee on C037:

I’m a chronic pain patient. I rely on prescription opioid medication to function and to be the Deputy that I am before you.

I have experienced and continue to experience a reduction in access to opioid medications as a result of legislation in the US related to the opioid debate. I take prescription opioid medication because it is the only effective pain relief I have found after trying dozens of other treatments. It is a medically necessary treatment for my lifelong disease. 

I fully support seeking better ways to treat addiction. I support training for intervention in cases of addiction, but I also seek a balanced approach in which all our siblings experiencing any form or type of pain have access to the treatment they need.

I testify in opposition to this resolution, not because I don’t agree with treating our siblings who experience and suffer from addiction. I oppose this resolution as written because I believe it addresses one group of people – those experiencing addiction – without also acknowledging and recognizing people who live with pain, for whom prescription opioid medications are a medically necessary form of
treatment and pain relief.

It is our duty as Christians to respect the dignity of every human being, and I believe that calls on us to very intentionally acknowledge those affected by addiction as well as those living with untreated or undertreated pain. I do not believe it is our job to decide what treatment is best for people living in pain, as we are not doctors, but I do believe we have a responsibility to acknowledge the reason opioids exist – and that is to treat pain; and I also believe education around the realities of chronic pain is warranted.

Were we to focus solely on those affected by addiction, we would miss a large subset of the population that is experiencing a lack of access to scientist- and doctor-recommended pain relief as a result of legislation focused on the addiction-crisis portion of this issue. Chronic pain is a very real crisis as well, and people experiencing lack of access to prescription opioids are dying by suicide so they do not have to live with the pain.

Again, I do not wish to remove attention from the disease of addiction, but rather I believe there is room in this resolution to acknowledge two groups that are very much affected by current opioid legislation, albeit in very different ways.

I would also offer that a majority of the statistics related to opioid overdoses and deaths in the US are due to illicit opiates and other drugs, and not prescription opioids. 

I am happy to be a resource should you have questions.

3. “Sticks and Stones” – Amendments in the HoD 

From the floor of the House of Deputies (HoD) I amended a resolution (A068) to include “physical ability” as one of several diverse categories to be included during plans to change wording during possible revisions to our Book of Common Prayer, or BCP (“Resolved, That such revision utilize the riches of Holy Scripture and our Church’s liturgical, cultural, racial, generational, linguistic, gender, physical ability, class and ethnic diversity in order to share common worship;…” – A068 Resolve 9).

The resolution I amended wasn’t passed, but was instead replaced by a “substitute” resolution from the House of Bishops (HoB) that attempted to find middle ground between the NIMBYs and the “It’s time to change our BCP, people!” people.  Fortunately my amendment to the original resolution remained intact and was transferred to the final resolution that was eventually passed.

Disabled Deputy amending a resolution from the floor of HoD
Amending a resolution in the House of Deputies. Image by Brian Baker.

Here’s what I said on the floor of the House of Deputies about the amendment:

“Sticks and stones may break your bones but words will never hurt you.” I hope we can agree that this popular phrase is incorrect, and that indeed words can and do cause pain. In this instance it is the stark absence of words that cause pain to me and to my siblings living with disabilities.

We as a church are still learning how to fully welcome, include, and embrace people with disabilities. Prayer book revision is an opportunity to learn together how to raise the voices of people and identities who have historically been denied a voice and visibility, by seeking to institute more inclusive language.

For people like me, wording like “all stand for the reading of the gospel” is more inclusive if worded in a way that includes people who are unable to stand.

You may, or you may not, know that we as a faith organization are *not lawfully required to abide by the Americans with Disabilities Act here in the United States. (I unfortunately can only speak to laws in the US.)

So it is our duty, by choice, as Christians, to take the responsibility of fully embracing the diversity of body and mind that is present in our rich tradition. A powerful step in the right direction is to intentionally look at our liturgies in the ways they include, silence, or ignore voices we have historically omitted, including people with disabilities.

To expand inclusive language to include people with disabilities would be profoundly healing.

(*To clarify, Title III of the Americans with Disabilities Act “prohibits discrimination on the basis of disability in the activities of places of public accommodations.” Since General Conventions are held in public spaces, The Episcopal Church is required to ensure such events abide by the ADA)

4. Securing a Disability and Deaf task Force

Sarah Watkins and Karma Quick-Panwala, who I mentioned before, authored two resolutions at GC79: D090 and D097. D090 (S. Watkins) calls for The Church to engage in advocacy for disability and Deaf rights. That was an easy win. D097 (S. Watkins & K. Quick-Panwala), which calls for the establishment of a majority disabled and Deaf task force, was a harder sell. Unfortunately.

Here’s what I said in committee in support of D097:

Before I was disabled I didn’t think about accessibility.

Now I think about the sidewalk, elevators, doors, bathrooms, seating, distance, the route, and more. Only after I’ve figured out whether I can enter a space can I think about the work I will do there.

I love The Episcopal Church. This is the work I was called to do. But I work three times as hard just to be here. We can cut that in half by establishing a majority Deaf & disabled task force dedicated to the work of reviewing and establishing access guidelines as well as their real-time implementation.

Anything we can do to reduce the extra energy I use just to participate will allow me to focus on issues other than physical access and allow me to focus on the actual work I show up to do. Like, maybe I’d like to testify about the prayer book or something.

I encourage us to all ask ourselves, in what way is our structure and functioning as a church preventing people from growing into their true calling?

The truth is, access issues pervade our church. We can and should do better. That is why, with a task force, we may and must finally, formally elevate voices that have already been silenced for trying and failing, time and time again, to be fully welcomed into our church.

Unfortunately, the resolution was amended significantly by the committee after our testimonials. The committee removed our call for a task force and instead gave the responsibility of fixing accessibility issues to Executive Council. Upon learning this news, the ‘disability and Deaf cohort’ requested to remove D097 from the HoD consent calendar and crafted an amendment overnight to re-request a task force from the floor the next day.

'the original Disability and D/deaf trio'
Charis, Karma, and Sarah after successfully amending D097 to create a Disability and Deaf Task Force. Image courtesy Karma Quick-Panwala.

Here’s what I said about it from the floor of the HoD (Karma and Sarah both gave amazing testimonials, too):

I remain seated to support this amendment.

If even one person lacks access to our institution we are not able to call ourselves a complete body in Christ.

The creation of this task force is an opportunity to move our church towards becoming a Jesusendorsed accessible institution that others look to for guidance. In this moment we can choose to strive to be more than accessible, or run the risk of a continuation of current inaccessibility. Let’s not stop short of doing more than expected when it comes to full inclusion of all our siblings.

We have a tendency to tread slowly about things that are new and possibly intimidating, because caution feels safer. But this isn’t new, and now is not a time for caution. Rather it’s past time to trust the voices of Deaf and disabled people who are asking to be seen and willing to do this work.

I urge you to adopt this amendment.

The amendment passed. Then the resolution passed. We got our task force.


These four accomplishments felt amazing to be part of as a first-time Deputy. I didn’t intend to show up in Austin and help start continue a movement, but by speaking up and being willing to be one of the faces of the disability and Deaf cohort, I realized it was inevitable. So I embraced it early on and locked in my Disabled Deputy status, Twitter handle, and hashtag.

Being a Deputy to General Convention is something I feel I was born to do. I chose to go despite my current health, knowing full well that I would be doing more harm than good. I will spend months recovering from GC79, both physically and mentally, but the positive trade-off is that it began healing some horribly broken patches in my soul.

Testifying, speaking from the floor, simply being physically present with my wheelchair, and having a presence online highlighting access issues granted me conversation opportunities I never would have sought out on my own (did y’all know I’m an introvert?). Being at General Convention lifted me up and reminded me how empowering it can be to be heard, consulted, and thanked for pushing the Church in the right direction. 

GC79 was one of the first times I’ve felt like I am wholly and completely where I need to be.

Thank you, Madame President.

Deputy Hill, Northern California.

Signing off,

Disabled Deputy


Update 7/20/18: If you are an Episcopalian with a disability, I am compiling stories that may be shared with committees (ie Executive Council and/or the Task Force mentioned above) at an appropriate time in the future. Email Charis.Anna.Hill@gmail.com and write in the subject line: “EpiscoDisability Stories.” I will reply with several questions you can answer.


Resources:

What is The Episcopal Church?

What is General Convention?

What else happened at General Convention?

Didn’t I hear about The Episcopal Church in the news recently? Oh, you mean the Royal Wedding preacher (link includes full text and video)?

Selfie with Presiding Bishop Michael Curry

 



If you found this post useful in some way, please consider supporting my writing with a $3 tip at ko-fi.com/beingcharis. Your support will help me keep the lights on (maybe?) and make me smile.

 

 

 

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5 thoughts on “Disabled Deputy On a Roll”

  1. Thank you for speaking up about the plight of those in chronic pain. Daily, I hear from people in my fibromyalgia and chronic myofascial pain and dysfunction group who have lost, are losing, or are in fear of losing the medication they need to function. We who have these conditions have a pain generator and a pain amplifier to deal with, and often have many more illnesses besides. We need to get the facts straight. This is not “an opioid crisis”, it is “an opioid ABUSE crisis”. There is a difference between use and abuse. It is not “a war on drugs”, it is a”a war on drug ABUSE”. Patients who use these medications in order to function, and their medical care providers, should not be caught in the crossfire. We should not be stigmatized and further harmed because we have chronic pain.

    Like

  2. Charis,

    Many thanks for giving us your summary of the convention and pointing out some of the highlights for your efforts. I am beginning to see myself as disabled as well. Speaking truth to power has been my downfall. Indeed, in this religious context, it has been an impediment for eons.

    May the Peace of Compassion be with you.

    Ken Coit
    Raleigh, NC

    Like

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