To sit in waiting worship is to have legs bouncing, fingers tensing and relaxing, nails picking off polish of other nails, mind not settling but looping through ideas and half thoughts, body occasionally slightly rocking and twitching, face grimacing, and eyes fluttering to create sensation.
All is just energy tamped down and contained.
Effort spent to conform.
For what? More frustration and continual reminders that I am different?
Messages swirl in my mind, but no words can come out.
Is that being tamped down, too? A casualty of the attempts at conformity?
I am an autistic Quaker with obsessive compulsive disorder, attention-deficit/hyperactivity disorder, generalized anxiety, and speech and movement disorders. I wrote the passage above as part of a two-page running commentary during a realization of why I had not been attending meeting for worship. During my lamenting, I realized the accommodations I successfully used elsewhere were not available at the meetinghouse. At work and at home, I use accommodations such as clear directions, lists, and agendas for meetings, and I schedule flexibility and opportunities to move and take breaks as needed. In addition, I have multiple avenues of communicating and coworkers who understand that my ability to focus fluctuates greatly. I was unclear if suggesting these sorts of accommodations at Quaker worship would be welcomed or if they went against what the community expected for worship, since no one talked about these things. So after writing about my observations of my spirit and body, I took a big leap and shared this work with others, including a Friend named Angie.
We have been friends for five years. After reading my letter, Angie lamented that she had noticed not only my absence but the absence of others as well. She felt sad and a bit guilty that she hadn’t known the reasons for my not attending worship, but was extremely grateful that I could trust her with these ideas. I hadn’t shared these needs and the depth of emotion before, and my vulnerability struck a chord. The most common question I received was this: “If a meeting becomes inaccessible to its current or changing membership, how does the community take action to address the true needs of all who are present?”
This query, like many queries in the Quaker world, spurred great conversations that aligned with larger conversations already taking place. Recently, North Columbus Friends Meeting in Columbus, Ohio (NCFM), came into unity on the topic of the inaccessibility of the meetinghouse and agreed that major repairs would not fully address physical accessibility needs for bathrooms, doorways, and entrances. The meeting began an ongoing search to secure a location that would fit the needs of our diverse community.
While NCFM acknowledged the physical accessibility issues as well as it could before relocation, there seemed to be an opening to expand how we traditionally talk about accessibility to include that of neurodivergence among Friends. After sharing the letter with the Ministry and Nurture Committee, everyone agreed it was important to meet to talk about this. Angie attended as a support person for me. We were both excited for the opportunity but unsure and nervous about how it would be received with people who are not as close to me socially.
In the gathered space with the Ministry and Nurture Committee, Spirit seemed to move differently from how it did when I shared the letter and my needs with others in my immediate circle. It was emotionally and physically exhausting to have to re-explain and describe the ways that worship has been inaccessible. Thankfully, Angie assisted by reinforcing and summarizing points that I had already expressed, or she phrased them in different ways. Having an explicit support person there, was a great asset in relieving the stress of being the sole experiencer. I wasn’t alone and my needs were important.
During the process, everyone agreed to some updates to the meeting for worship facilitator’s welcoming speech (this is a short introduction to worship in our meeting in which we briefly explain why we’re gathered and what to expect). These changes acknowledged that those in attendance are all human and have different needs, that people are welcome to move and fidget, to share messages in a variety of ways, and to engage in quiet activities that help some settle and center. However, many in the Adult Young Friends (AYF) group, myself included, were concerned about the perfunctory nature of these changes and how they lacked a sense of joy and welcoming. So together, we crafted some queries. AYF wanted to draw attention to how these accommodations could bring new Friends to meeting, encourage old Friends to return, and reduce stress of those powering through their own discomfort. AYF did want to acknowledge that engaging in quiet activities or using fidgets might disrupt others’ settling. However, it was essential to try and explore the root cause of these requests: that humans have different needs and there are many ways we can worship together.
In The Disabled God, Nancy Eiesland draws on the themes and advances of the disability rights movement to identify people with disabilities as members of a socially disadvantaged minority group rather than as individuals who need to adjust.
- How might a bonus meeting for worship contribute to the liberation of disabled people in our community?
- How can the joy of an additional meeting for worship help shape our lives in the Light?
- What can we learn from this additional meeting for worship? What practices might be carried over to the morning meeting for worship?
The new welcome speech was a start but was not holistic enough to truly create a space where I felt fully supported, so I still did not attend, much to my dismay. Meanwhile, Angie had crafted a proposal for an afternoon meeting for worship, designed with disabled attenders and differing needs at the forefront, not as an afterthought. This stood in contrast to how many meetings and systems were set up and still operate.
The proposed meeting would start at 2:00 p.m. to accommodate parents with young children, folks who had to work a morning shift, or college students who are more available in the afternoon. This meeting for worship would last 30 minutes instead of 60 and skip any announcements or long introductions. Finally, it would specifically celebrate the many ways Friends need to settle on their own terms, such as by fidgeting, coloring, changing locations, taking breaks, and utilizing a variety of seating. Feeling hopeful and satisfied with how the afternoon meeting addressed the needs of many Friends, Angie took this proposal to Ministry and Nurture.
With the full support of the Events Committee and AYF group, Angie met with Ministry and Nurture. Initially, the committee shared concerns that adding another version of meeting for worship might create separate groups within the meeting. Some thought that the adjustment to the worship facilitator’s script was enough and showed that NCFM was sensitive to the needs of disabled people. One member expressed a desire for Friends who needed accommodations to “meet halfway” since NCFM had already done so much work regarding accessibility. It took a lot of discussion and discernment, but eventually Friends were able to see that accommodation is an ongoing process, that just as we would make adjustments for Friends’ physical needs, we should make adjustments for their neurological, sensory, communication, and cognitive needs.
I still had lingering concerns, but I was not yet able to articulate that something about all of this didn’t yet speak to my heart. After being open to Spirit and listening during the final meeting with the committee and before the presentation at meeting for worship with attention to business, I realized what was off and what had been the difference all along: it was lacking joy and a spirit of true welcome. When I initially shared my letter with my close friends, it created much hype, dreaming, and wonderment. Most in my circle were disabled themselves or shared experiences with someone who is disabled. We were all working on recognizing internalized ableism and thus no longer had strong biases against the disabled state of being. We dreamed about what a fully accessible meeting for worship could look and feel like. The joy of being free with Spirit could be astonishing only if accommodations were in place and others were invited to join us as whole humans.
During that final meeting, Spirit compelled me to share this hope: a hope that others could also see the joy and unbounded depths of love that this afternoon meeting for worship could cultivate. The clerk of the committee then rephrased his proposal speech, outlining how the community can recognize the wide and varied needs of people and that this was a time to raise up those among us who have expressed needs and to marvel at the ways we can gather. Finally, I felt assurance and optimism.
Sense of the Meeting
Overwhelmingly positive! That was the reaction during the meeting for worship with attention to business. After hearing the proposal, many Friends expressed appreciation for spearheading a different version of meeting for worship that met the needs of all Friends. Those in attendance remarked that it could be an opportunity to bring in more Friends and attenders, to bring back Friends who had not felt accommodated at morning meeting, and to open the door for new ways to gather in worship.
To start promoting the event, I shared it online, steeling myself for the unknowns that online comments can bring. More surprises! I posted it to Reddit’s “r/Quakers” community and positive comments rolled in. In six weeks the post received over 2,300 views and a 95 percent positive rating. One user commented: “As a disabled person . . . I think the idea for the shorter afternoon fidgety meeting sounds so fun and powerful! I would love to get to experience a Quaker space with such beautiful and plentiful neurodivergencies!” Another said, “This is amazing. Most faith leaders just go ‘deer in headlights’ if you even mention these kinds of needs.” Now we just needed to host the first afternoon meeting for worship.
Angie and I were motivated by the positive responses, both online and from Friends in NCFM, and started to prepare for the first afternoon meeting for worship. Using my knowledge as a special education teacher, I created a picture schedule and a picture version of the expectations outlined in the facilitator’s welcoming speech. Angie, along with AYF, gathered fidgeting and other supplies, and we talked about ways to rearrange the room to facilitate and encourage movement.
Finally in May of last year, eight months after coming forward with my letter, I attended meeting for worship again. Being able to pick my seat, fidget, wiggle, experience tics, and draw in a space where I wasn’t alone—I wasn’t different—was freeing. I brought along my iPad that has a speech app on it. Sometimes words get stuck in a traffic jam in my mind and can’t come out, so writing them out is easier. Having all this in place helped me settle more easily. Although I have not used it yet to share a message, I do treasure the knowledge that the message read out loud via an iPad will be listened to on par with a message shared verbally.
The session was well-attended both online and in person. Angie acted as worship facilitator and encouraged folks to worship in any way they felt led. Some Friends in attendance sat as they would at morning worship; some read; some colored; some sat on the floor and played with slime. It was what everyone needed that day, according to their own needs, with no judgment.
Afterward, attenders shared their feelings about finally being able to be a human at meeting for worship. Reactions ranged from being delighted to use the accommodations to being grateful to have the option to use them, and some Friends noted that just being in company of others who appreciated accommodations alleviated stress and allowed them to settle. One Friend shared:
This meeting was the first time I’d ever worshiped in the manner that feels most authentic to me outside of the privacy of my apartment. Looking around the room, I was struck by the idiosyncratic ways in which each Friend’s inner teacher guided them, and the gift allowing our inner teachers to teach and learn from one another in turn.
North Columbus Friends Meeting will continue to adjust and be open to changes. Those involved in supporting Angie and me learned that Quaker process can be a great source of compassion to allow room for Spirit without letting biases and fear of change get in the way. All involved hope that others connect with what was shared so openly here: to contact the authors and share resources so that the community can thrive and grow and so that others can experience compassion and support from a loving Society of Friends. That’s a disabled person’s life: ever changing due to ever-changing needs; relying on others; having others rely on them; and, in essence, being human. I encourage all of us as Quakers to look inward and see the ways we limit ourselves and others. How do we actively increase accessibility in all of the spaces we inhabit in some way? How do we open up those spaces? How do we engage without judgment, unless we actively inquire into what, who, and how we judge? Respecting and responding to disability needs is respecting and responding to humanity. Strengthening community and being there for someone during their highs and lows, trusting others, and being aware of biases are ways that this community will persist.
Afternoon meeting for worship visual schedule (left) and first page of expectations with pictures (right); both were created using Boardmaker, a software program for augmentative and alternative communication.
Ways to Increase Accessibility
- Update your meeting’s online presence. Disabled people need to know an event’s details in advance in order to plan and see the space through pictures and video via an accessible website and social media.
- Use unambiguous speech about what accommodations you have in place and why. Be proud that your meeting has accommodations for disabled people and that you are prepared to work with people if needs are not yet met.
- However, if an accommodation is not possible such as making stairs accessible for a wheelchair user, acknowledge your meetinghouse’s shortcomings and apologize. Consider offering hybrid meetings until the meetinghouse can be made fully accessible.
- Work with disabled people in your meeting and local disability advocates/consultants. Your meeting’s needs are unique; address them.
- Be open to change and improvements. Find ways to host educational events to help build understanding in the community. This education drives openness, confronts biases, and helps continue conversations.
- When implementing solutions, use clear language to say that this is an ongoing process, and it may be messy and different from what was before. Appreciate the wonder and joy this can bring.