ACSQ contributor (anonymous):
I spent much of my younger years unwell on a Disability Support Pension due to a number of interrelated autoimmune conditions that rendered me fatigued, in chronic pain and dealing with unpleasant ‘plumbing’ issues. The worst symptom was the persistent ‘mind-fog’ – I was so out of it that I didn’t realise I was out of it. It was only when I tried to read a Garfield comic strip in a newspaper six times repeatedly, unable to understand it, that I ‘discovered’ that something was wrong with my cognition.
During this time, I was part of a tight-knit church community in another state. My experience of this community was mixed, largely because of the how different church leaders and community members treated me. I hope the following insights and suggestions assist church leaders with understanding some of the unique challenges that parishioners who are unwell or living with a disability have to navigate, as well as how to support and include these people, who have much to offer.
Be flexible with expectations, while offering opportunities to contribute
While my church service and gathering attendance was not reliable enough for me to be rostered on for tasks or delegated timebound duties, I still wanted to contribute to the life of my community.
Sometimes clergy and lay church leaders make the very well-intentioned error of not asking chronically unwell people or those living with a disability to contribute at all, likely out of fear of not wanting to additionally ‘burden’ the person.
I also experienced the opposite – a married couple who were church leaders constantly telling me that I should make weekend and weekday church gathering attendance my number one priority, even over the one unit of university study that I was somehow managing to sustain while I was unable to work. The pressure got so bad from this couple, that a more senior community leader, upon finding out what was being said, intervened to politely tell them to pull their heads in, which they did. I was very grateful for his swift and clear action.
Such difficult times, were offset by lighter moments, including the time I was asked by the praise and worship team leader to run the overhead projector. Knowing that I could not stand for long periods, he understandably delegated me a job that required sitting. This task involved putting many A4-sized sheets of plastic film (with song lyrics written on them) on glass one by one, with light and a mirror then ‘projecting’ the lyrics onto a screen. When I am well, I have terrible spatial skills, when I was unwell with poor cognition, my spatial skills were non-existent. Due to the mirror effect, the film had to be put on the glass in a particular way, otherwise the text appeared upside down and back to front on the screen. Unfortunately, the ‘mental rotation’ required of this task proved too much for my parietal lobe to handle. For an entire hour-long praise and worship session, I persisted, albeit in vain. Knowing that I see the lighter side of life, the whole congregation was in fits of laughter as I stubbornly persevered with the task mouthing ‘I am so sorry’ and shaking my head apologetically to everyone as I kept trying to get it right, sometimes having to adjust a single film two to three times. The one instance I put the film on the projector the correct way the first time, the 200-strong congregation broke into spontaneous applause and cheered, at which point I got up and curtsied. Many people approached me after the service to either hug me or pat me on the back, saying that they had not laughed so intensely for ages. Sometimes involving unwell people or those living with a disability in church activities means things don’t quite go to plan. This is okay – and sometimes it is unexpectedly fantastic.
As I was unable to attend many gatherings and events, my primary contribution to my church community was intercession from home. This was really all I could manage, but of value nonetheless. I was always able to pray, and, in hindsight, my prayer life has never been so blessed as when I was unwell. Looking back now, I see God’s sovereign hand as he gave me the grace to find purpose in what I was going through – as only God can. While my friends moved on in a more ‘linear’ fashion with their lives, graduating from university, travelling, and pursuing their careers, instead of seeing myself ‘stuck’, I imagined myself ‘moving’ like a tree’s roots going deeper into the soil through prayer. In the boughs and foliage, I kept all the people I prayed for – either imagining them to be birds safe in their nests or small marsupials napping peacefully among the protection of the branches.
It is very common for God to bless unwell people with rich interior lives – especially when they have to endure long periods confined to bed, as I did. However, this oft goes unseen and isn’t something the person is likely to voluntarily speak of or to speak about in detail if asked.
My most important suggestion for clergy and church leaders here is for the need to balance flexible and realistic expectations with understanding that unwell people or those living with a disability have much to contribute and, indeed, the right to participate. This may be in the way of intercession; art or other creative handwork; rostered or unrostered light-weight duties, depending on what the person prefers; writing for the church newsletter or anglican focus; administrative tasks that can be done from home; assisting with kids’ church; being part of a phone tree; reading church notices; or, helping with social media.
So, please ask the person in your church community who is living with chronic health issues or a disability what their gifts and skills are, and how they wish to participate. If needed, have this conversation with a discerning friend or family member present, offering possible suggestions during this chat to help with the flow of conversation.
10 ways to include, support, encourage and welcome people in your congregations who are chronically unwell or living with a disability
- Above all, help identify and provide opportunities for the parishioner to contribute in meaningful and enjoyable ways that are within the person’s skillset, without expectation or firm deadlines. Ensure the person is sincerely acknowledged and thanked for their efforts – what may be a ‘small’ effort for a well person may be the energy-equivalent of the ‘widow’s mite’ for a parishioner who is unwell or living with a disability.
- Ask the person how they can be practically supported (e.g. with lifts to church) and, if required, delegate routine tasks to sensitive, sensible and reliable types.
- Be mindful that being unwell or living with a disability is very expensive, and often compounded by a person’s inability to work. Let the person know in a discreet way at an appropriate time that small event ‘door’ fees and regular giving are optional and that lack of financial resources are no barrier for attendance.
- When arranging discipleship support, ask the parishioner if they have a preferred person in mind, or if unknown, what qualities they are looking for in such a partner.
- Understand and respect the person’s wishes if they say they want to be treated in a given way (and sensitively remind others of these boundaries when required), while also being mindful of confidentiality.
- Discreetly step in and advocate for the person when overbearing types forget their manners. This can make all the difference to a person choosing to stay with a community or choosing to move on.
- Unwell people often have special dietary restrictions, such as gluten-free, dairy-free or FODMAP requirements. Offer food-friendly items for such parishioners, clearly labelled with ingredients, during fellowship gatherings.
- Ensure that paths are clear for wheelie-walkers and wheelchairs and that accessible areas are free of potential hazards. Check in with the person re any particular needs they may have and seek professional advice if required.
- Consider announcing at the start of church services, and noting in your pew bulletins, that people have the choice to stand or sit.
- Arrange for gluten-free hosts to be provided, with ‘spares’ kept in the tabernacle or aumbry.
This is an abbreviated version of ‘Overhead projectors and wheelie walkers’, which was published in anglican focus on 10 June 2020.