As we seek to carry out this ministry, we will be intentional about how we fully include all in Christ’s
love and service. This means that in our work as a Regional Council we will actively seek equity for, and
participation from, the full diversity of God’s Creation; seeking racial justice, identifying and undermining
colonialism, celebrating all sexual orientations, gender identities and expressions, valuing linguistic and
cultural diversity, seeking to include all who face challenges with their mental and physical health or
social and economic circumstances. (Except from the ‘Living Call Statement’ for the EOORC. Adopted in May 2023)
When I consider your heavens,
the work of your fingers,
the moon and the stars,
which you have set in place,
4 what is mankind that you are mindful of them,
human beings that you care for them?
5 You have made them a little lower than the angels
and crowned them with glory and honor. (Psalm 8: 3-5)
Last weekend I attended the EOORC Annual Meeting, held here in Brockville. I know that many of you are mystified by my love of Regional meetings, but truthfully, I was so excited to be with my colleagues and friends, to worship together and just to hang with each other catching up on our lives in church-land. The registration form for the meeting asked us to specify the kind of assistance we would need to participate in the meeting – so I asked for support for my Bethel knee and my other disabling features. I was assured that the venue met the ODA standards, and that the caterer could meet my dietary needs.
I find it really hard to ask for help. I always feel a bit like I’m putting people out or letting down the disability world because I’m not ‘inspirational’, and I don’t ‘rise above’ my disabilities. I’m never going to be fodder for those inspirational videos you get on social media, complete with a sentimental soundtrack, who somehow turns their disability into something that makes them superhuman. My disabilities aren’t inspirational. They are limiting. And they don’t make me a better person – in fact – sometimes they make me grumpy.
Disabilities, in our culture are supposed to be overcome. If they’re not overcome, they’re supposed to make you ‘better’. I don’t think I’m better because I’m disabled. I think I’m just disabled. After all, I don’t think I’m better because I sing in Community Choir, or do Ministry, or am a mother. They are just part of what make me, me.
So it was with all of me, that I hesitantly outlined what I needed assistance with in order to fully participate in the Regional Meeting.
And here’s where things got stressful. I outlined what I needed, but only one of my requests was honored – my request for gluten free bread. Not only that, but I was excluded from parts of the meeting because I couldn’t get up on to the platform for the part of the meeting I was involved in.
And it gets worse from here. Not only could I not get up on the platform, but as I was standing at the base of the platform (so that I could still be involved), I was hissed at by someone on the platform to “sit down; you’re not supposed to be here” as if my inability to get on the platform also meant that my judgement to be involved was also questionable. (And it actually gets worse from there – because when I asserted myself I was met with eye-rolls. For reals).
And I know that you all are probably feeling a little outraged on my behalf; and actuall I’m there now, but in that moment, as I was standing at the base of the platform being hissed at, all I could feel was shame. Shame that I was disabled. Shame that my disability meant that I was viewed as having poor judgement.
We have so much to do and so far to go.
Now, I also know that the Church, even our wider Church, is populated with people who generally are kind and are well-intended. I’m pretty sure that if I had overcome my shame and pointed out how hurt I was at being excluded that people would’ve leapt up to help me. But there is a huge difference between intent and impact. The impact of this meeting was pretty awful. And this is for ME – and I’m someone with pretty broad shoulders who mostly approaches things like its just a ‘problem to be solved’ rather than an issue is defeating. I’m sure that there were people with disabilities who self-excluded from the Annual Meeting because they knew they couldn’t physically manage the venue. I’m sure there are others who are still suffering because of the exclusion that they experienced.
When I look around the sanctuary on Sunday morning, I’m struck by the number of us who live with disabilities. I’m also really aware, that my disabilities, and yours, are all God’s Creation – they are who we are as much as my preference for the colour red, and my penchant for eating a whole lot of chocolate. The Psalmist reminds us that we are made “a little lower than the angels”, even though we can’t, with Bethel knees, and hips, and even with Ehlers-Danlos Syndrome (my disability) get up on the platform to participate in the Regional meeting.
So, my dear Bethel Friends, now that we know better, we need to do better. This week, I hope you’ll all help us include everyone of every ability and disability, so that their needs as people no longer are places of internalized shame, but are instead simply part of who they are, and part of who we love. I’ll do my part to make sure I get the support I need from all of you, and I hope that you will all support and recognize our own internalized shame, and draw together as community.
Long blog today – and I’m thinking its not the end of things, eh! But we can work this out together.
Blessings today, and Remember you are Loved. All of you.
~Rev. Lynne
Thank you for your honesty, dear friend. I’m right there with you! Shame is an awful thing to feel when we are weak and in pain. It ought not to be so and so I am ashamed of some of my colleagues and their reactions. Their hiss makes me angry as you had every right to be there. Thank you for your thoughtful and gracious rant!!
Cat
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Thank you for writing about this painful experience and the way it wore your spirit down after anticipating inspiration and rejuvenation. This wasn’t easy for me to read, because I know what intentional and unintentional exclusion is. I also know how risky it is to try communicate the experience and not be branded as complaining and difficult. I sometimes find a strong competent woman (hello, you!) is not allowed to be vulnerable or weak. Shaming/Blaming expresses the social discomfort for any revealing of those things about ourselves. I have quite a toolbox of things to cope and manage the unexpected “glitches” that are just unforeseen circumstances of life. I don’t really count “glitches” as what sets me back and I’m guessing you don’t either. So that toolbox is also there for the careless or more pointed barriers I will face–often in spite of intentional planning, and coordination with leaders, as you unexpectedly faced. Sometimes I emerge a little dented but still intact. Other times I simply don’t have the reserves to absorb it and I step away. There is always a lot at stake when we want to be with our “peeps” to share and discuss everything that matters so much about gospel ministry and we know we are already overcoming just to show up and try. Pace yourself. There’s nothing wrong with us that we don’t disclose openly in trust and hope. Thanks again for letting us in, just a little deeper. I see coffee in our future. Dxo
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Thank you for sharing your experience, Lynne. I’m sorry you were shamed and excluded. I wish your experience was rare, but we both know that it is all too common in the church. I’ve experienced deeply hurtful exclusion, isolation, and overt rejection from the region I’m part of since being transferred from active ministry to LTD. My disabilities have, in practical terms, rendered me either totally invisible or wholly unacceptable, despite our self-awarded status as an “inclusive, justice-focused church.” Ha! It’s laughable. I’m an ordained minister of the UCC who has served multiple congregations in two provinces and two long-term chaplaincy gigs (college and military) before becoming too sick to continue working in ministry. Since being on LTD, I have tried to continue sharing my music and writing from the margins, as my health permits, and in return, I have been whispered about, harshly judged, rejected, and treated as a cautionary tale. Being chronically ill was already a source of suspicion; becoming acutely I’ll with two new diagnoses, including cancer did not prompt any sort of pastoral care or compassion from the region. On the contrary, my LTD status was met with irritation and judgement, then with total radio silence. It’s been three years. There has been zero pastoral care or connection since resigning from my congregation.
I know, I know; the organizational structures are collapsing, and I am aware that no individual intended to be awful. Still, as you wrote in your piece, no matter what the intent was, the impact was considerable harm. I and my family have been treated in appallingly ableist ways, and real, measurable harm has been repeatedly caused.
I’m genuinely not wanting to point fingers; I’m sharing my experience to affirm your blog post, Lynne, and to say that you are certainly not alone in having been excluded and shamed because of your physical limitations. This past winter, I was told by a congregant whom I didn’t know that “I ought to be in the choir, with a voice like mine.” I politely thanked the person, and replied that my health wouldn’t currently allow such a commitment. The congregant glanced dismissively at my cane, and then said “Well, surely you could hobble up there eventually!” (As if this stranger could judge my entire medical history, as if my physical limp and accessibility aid were my only issue, as if I “owed” the gift of music to this particular congregation) … yet no one ever feels the need to make such comments to my able-bodied spouse.
In our family’s repeated experience, the church hasn’t been a safe place for people with disabilities – not when we are sitting in the pews, and not even when I’m in the pulpit or presiding at the Table or Font. This is unjust and just plain wrong. It is hurtful to those of us who are already suffering. I am not only my disabilities! I still have many gifts that I long to share with the church, but our current model of ministry is that those of us who are ill must be shuffled off to LTD and then never heard of again. I’m in my 40’s. I still long to contribute to the life and work of the church. Yet every offer I’ve made to the region has been either ignored or politely declined with the comment that it would be “too difficult” to include me. Wow.
The question for me now, is “how much heartache and suffering can I reasonably offer, and for how long, before giving up on the UCC in despair?
I’m a stubbornly hopeful and tenacious person, but the discrimination, exclusion, and sheer ignorance of the church (all while congratulating ourselves on our inclusiveness and our daring justice) is a lot to swallow, some days.
Lord, have mercy.
Christ, have mercy.
Lord, have mercy.
And if people like us feel like a sharp thorn under the saddle of the able-bodied, well, so be it. Maybe some learning can happen. Maybe some healing could occur, by the grace of God. When we know better, we can do better, right?!?!
I pray so.