Overhead projectors and wheelie walkers

Reflections

“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,” says an ACSQ community member and former disability pensioner

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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 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.

Being unwell is expensive – be mindful and understanding of this

Anyone who has lived with chronic illness or a disability knows how expensive it is, with GP, specialist doctor and allied healthcare costs; pharmaceutical drugs; vitamins, minerals and herbal supplements; mobility and ergonomic aids; diagnostic tests; and, other expenses all adding up. This is further complicated when an unwell person has to transition to part-time work or cease working in order to cope, as I had to do for a number of years.

The impact of financial constraints on a person’s ability to join in community activities can be quite significant. There were times I was well enough to attend a small church event but I didn’t go because I couldn’t afford the $5-10 cost or the ingredients to put together a ‘pot luck’ dish. I was also unable to participate in planned giving and when I did contribute to the ‘plate’ at church, it was a meagre amount. When you are chronically unwell, right or wrong, you sometimes feel that your ‘pride’ is all you’ve got. Thus, it isn’t easy to come forward and express your inability to afford what for most others is a paltry amount.

While priests and other church leaders cannot be expected to read minds, it may be helpful for them to be conscious of the possibility for this. A discreet conversation with the unwell community member at the right time could really help. Perhaps let the person know that you understand the financial constraints of being unwell or living with a disability and that they are welcome to attend gatherings without the pressure of paying the door fee, bring a meal or ‘give’ regularly.

Arranging appropriate discipleship support

In the church community I belonged to, a person of the same gender who was more mature in their faith was assigned to each individual to support them in their spiritual journey. I wish more consideration had gone into deciding those assigned to me.

The first person assigned to me was appropriately 15-20 years older and more mature in her faith, but she was terribly indiscreet. I discovered by chance that she was sharing with her husband everything I told her, including regarding my more personal physiological symptoms. This was unacceptable to me, so I moved on from her.

Another person assigned to me was, oddly, comparable in age and faith maturity, but I decided to go with the flow regardless. She was much more conservative, serious and regimented than I was. I met with her a few times until I discovered that the people responsible for arranging the discipleship partners, the pushy married couple, had an agenda to get me to be more like her.

As a result, I requested that I be partnered with a person of my choice – a woman who understood the importance of discretion, common sense and open mindedness. The ensuing arrangement worked very well, with the person I chose becoming an absolute blessing in my life due to her sensitivity, generosity, flexibility and acceptance. Years later I was able to help return her kindness when she needed help.

My advice to church leaders arranging discipleship partnering is to ask the unwell person for the name of a preferred person or, if this is unknown, what preferred qualities are sought in a person who is to walk with them on their faith journey for the given time.

Practical support structures

One of the most wonderful aspects of being part of a faith community is the way people pitch in and practically support each other when the chips are down and a parishioner is struggling.

Unable to drive, I was very grateful to my friends in the community who drove me to medical appointments and church services or picked up groceries for me. I also appreciated the meals lovingly made with my dietary constraints in mind, which were then dropped off with an encouraging note or a warm smile. Decades later, I still remember every single one of these good folk and their kindness. The memory of such gestures stays with you.

My suggestion for church leaders is that they ask the person who is unwell or living with a disability what kind of support is needed. Each person will have different needs, depending on their existing support structures. As my family lived interstate and because I was unable to drive, my primary need was mobility assistance; however, everyone will be different. Fortunately, I had many church community friends willing to assist me with lifts to church whom I could call myself, but not everyone has this kind of network.

Understand and respect the unwell person’s wishes

When you are chronically unwell, especially when pain is a symptom, the mental challenges are as tough as the physical. So, when I was well enough to leave the house, I didn’t want to talk about being sick and sore. I just wanted to ‘pretend’ I was well and enjoy myself as much as I could in the moment. Because I was clear about this, most people respected my need for this kind of ‘space’.

There was always the odd person after church or at fellowship events who thought it was their job to corner me and explain with proselytising zeal how I should take care of myself. Sometimes this was well intentioned and sometimes I suspected it was more about assuaging guilt, perhaps because they felt that they should be ‘doing more’ for me and lecturing me made them feel that they had done something to ‘help’. My strategy was to avoid such people when possible, with a discreet church friend ‘worded up’ in case a ‘rescue’ was ever required.

I will always remember the discerning priest who, after I received communion, reached out and gently squeezed my hand with a kind, knowing look – I think upon seeing strain on my face. Sometimes a sincere and subtle acknowledgment is all that is needed, especially when discipleship partnering and other support structures have been arranged.

My suggestion for clergy and church leaders is to ask the unwell person every so often and in a sensitive way how they want things to be approached. Everyone will be different, but my experience is that many unwell people just want to be treated with a level of normalcy during fellowship gatherings and at church events.

Make the environment accessible and seating flexible

Unwell people and those living with a disability commonly experience significant mobility challenges. During the brief periods when I needed to use a wheelie walker, I chose not to go to church, instead staying home to pray or rest.

When you experience such difficulties, you start ‘seeing’ spaces with a different set of eyes. Even to this day, I still ‘see’ tripping hazards when out and about before others do and I immediately notice aisles or footpaths that a person using a walker or wheelchair would struggle with. I also anticipate related needs automatically – for example, when the bus pulls up at the bus stop to pick up a passenger waiting in a wheelchair, I always get up and lift the seats in the allocated disability area so the person can more quickly and easily position their chair.

It is also common for unwell people to have mobility limitations or postural-related symptoms that make standing up and sitting down in church services difficult, or possibly dangerous if there is an associated risk of fainting. It is very annoying when a churchgoer taps you on the back during a service and tells you to stand up when you can’t. This happened to me a few times, likely because I was young and the shoulder-tappers assumed I was being disrespectful.

I encourage clergy and other church leaders to think about how accessible their church spaces are to people who live with mobility challenges; to anticipate needs when possible; accommodate seating requests; make it clear that people may sit or stand, as they wish; and, to seek advice from those in their congregations directly affected, as well as professional experts, if required.

Even though I was told upon my diagnosis that I would likely never be well enough to work, I now live a very functional life. I still live with some symptoms every day, but I have a full-time job that is as much a vocation to me as a career, and I am always busy, with a child to care for, social justice commitments, fitness activities, and a faith community. Even though I live in a different state now, I remember and remain grateful to all those who prayed for me and supported and included me during the years I was so unwell.

10 ways to include, support, encourage and welcome people in your congregations who are chronically unwell or living with a disability

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. Consider announcing at the start of church services, and noting in your pew bulletins, that people have the choice to stand or sit.
  10. Arrange for gluten-free hosts to be provided, with ‘spares’ kept in the tabernacle or aumbry.

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