Disability, Chronic Illness, and Church
I was invited to take part in a discussion panel on Disability and the Church at a recent Methodist conference for Superintendents. We, the panel, appeared via Zoom. The Methodist Church is currently working towards a fully inclusive church with a strategy for justice, dignity and solidarity. Disability is one of those strands and some hard work is being done on noticing disabled experiences.
As ever, in order to be able to share in this panel, I pre-recorded what I wanted to say to start with. Interesting conversations followed. My answer to pretty much all the questions is “ask the person, hear their story”. Any disabled person is an expert in their needs, and has probably worked out what is most helpful for them and a way you can facilitate their participation in church life. And don’t assume everyone will have the same answer to the apparently same need!
Other people on the panel spoke powerfully from their perspective of their disability, but that is their story to tell. The recording of my offering is available here:
Here is the text:
“Hello, I am Pam, a Presbyter retired on ill health in 2007.
Mine is a story of not just disability, but also chronic illness which adds another dimension. My story is a progressive one. Most days I can do very little – some days less!
When I first became ill my symptoms quickly affected my whole life, including my ability to continue working. I have a chronic illness that affects every part of my body that should have any fluid in it, from my eyes and mouth to my joints and everything in between. It most noticeably effects my breathing and talking, hence why I’m speaking to you recorded, but also my balance, my walking, my concentration, my energy, my vision, eating and sitting for very long. So many of which are so necessary for Methodist church life! It is hard work to be at church for worship, anything extra is virtually impossible. Of course thrown in to that has been the need to Shield during The Pandemic.
My personal accessibility questions are: Can I get in the building, on days when I am well enough to? Is there available parking at the entrance? Can I get through the door wobbling on my crutches or if I have to come in on my mobility scooter? Is the threshold level? Is the way in to the worship area an obstacle course to someone with mobility problems or is it uncluttered, with a plain coloured floor and no steps.
Is the “right” seat available – height, space around, near enough the door etc? When we moved to our current Circuit, my first question was, “Which church has the comfiest seats?”, which sounds ridiculous, but is really important. Is written material available in the right font, the right size, with the correct colour contrast (and that applies to social media too!). I need the lighting to be just the right dimness for me where I am. Do those leading worship speak slowly enough for me to process and respond? I do sometimes wonder if there is a competition to see how quickly the Lord’s Prayer can be said – and I can never keep up!
They are my questions and my needs. Unfortunately, people with even the same disabilities as me may need different solutions to the same questions. My Top Tip is always ask someone what would help them. Never assume what they need, even if it looks just like what someone else needs. We understand that it is a balancing act of the needs of everyone.
I have been in three different churches since becoming ill as my disabilities have increased and we have needed to move to accommodate them (and a big shout out to MMHS who have been so helpful). Experiences have been varied. Some are willing to listen to what would help and do what they can (as my current church emphatically is), for some it has seemed impossible for them to understand or react, which ultimately meant I had to move on.
There are many issues of accessibility, but also of visibility, or perhaps invisibility. When you are chronically ill there are often times when you are not around, and it is not always noticed, quite reasonably, that you are “even more unwell than usual”, so may need some support, pastoral or practical, unless you shout – and you’re not always well enough to do that. Sometimes I just long for someone to check on me. Chronic illness is a very lonely life.
Zoom and hybrid worship has been a brilliant tool for those of us who find physical church difficult, and we are fortunate that we have formed quite a community amongst those of us who watch online, rather than being in the building, but that doesn’t always translate into those who are in the building knowing wat is happening in our lives. I think there is a lot of work to be done with hybrid worship on how those watching online can add to worship and not just be consumers of what those in the building offer. We have things to offer too.
My ministry has been supported, encouraged, and enabled during lockdown. It has presented new opportunities. I have been able to record some devotional videos in small chunks and edit them together and to write written sermons which have gone out in mailings to those not connected via the internet. For that I am very grateful, because for several years I have not been able to offer anything. The thing we can all best do for those who are disabled is help and encourage them to use their gifts. We still have a ministry, even if it might look very different to what it once looked like, or how we imagined.
My hope for the Methodist Church is that in love accessibility can be taken on board. If it is not, it seems as though I don’t matter to the Church, my presence and inclusion isn’t worthwhile enough to make simple adaptations for me. And sadly the reading of that for some can be if I don’t matter to the church, I don’t matter to God. So I am grateful for the opportunity to share in this conversation this afternoon, because it matters.”
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I thought it might be helpful to share my answers to a couple of the questions that came up in the panel conversation afterwards.
The conversation, as it often does, included language and being careful about language that we automatically say, sing or write without us thinking. Things that are difficult to hear for those of us with disabilities.
One of my bugbears is “Please stand to sing/pray/receive the offering” or even worse “stand if you are able”. I *could* stand, but it would not be safe or good for my wellbeing – and I would probably sway so much it would make others panic. But because everyday is a school day, and because there is no one right answer for “disabled people”, I hear that some people need clear instruction to feel safe that they are doing the right thing. I was asked what was better. My response is that a clear explanation at the beginning of the service suggesting people worship God how works best for them, their body and their worship of God should be all that’s needed. This allows for those who need to to move, sit, stand or whatever is right for them. Like all things accessibility it needs to be done in conversation understanding, and making space for, everyone’s story.
In our particular Methodist context, it was suggested that the Local Preacher’s Meeting would be a useful place to start with awareness of what could be done in worship, and how I long for that. But the wider accessibility issues need to be the business of the whole church. Any of us may find ourselves greeting or sitting next to someone who has some kind of need and we need to be aware of how we could help.
An interesting question that was asked was “what would spiritual flourishing look like?” Again, I can only answer for myself.
My first instinct is for the church, at every level, not to forget me (us). To remember that we exist and should be included and cared for.
My second is encourage and use our gifts. Help us to discover what they are and how the church can be enhanced by them. (I think this is something the church could be much better at generally, lots of people have gifts their churches don’t know about or use.) Perhaps they might be different to “normal”, but all the better. For myself, in my hybrid from home circumstance, I could pre-record prayers, reading or testimony that could be played in the service even if its difficult to live stream into the building. We could send prayer requests via the live chat that could be fed into the intercessions led from the building. What I would really love is if the zoom screen was shown in church. We can see them, but they can’t see us. Other people will have what they can offer – ask them, let God work through them and perhaps teach us something new.
I have written at greater length on these things, this was just a short introduction in a particular context. More of what I’ve previously said can be found here.
Pam's Perambulation 