This is a guest post by a family care-giver. The writer has asked to remain anonymous. Views expressed in this article are the author’s and do not necessarily reflect those of this blog.
These ‘dos’ and ‘don’ts’ cover any situation where there are long-term care needs which severely hamper regular engagement, participation and involvement in the life of a local church. What follows needs to be taken in a general way because each and every experience of disability or long-term care need will be different.
One further caveat – this is being offered to help churches in their care and inclusion of the disabled and their families. The author is very conscious of the love, support and understanding of their own local fellowship.
Getting alongside someone with a disability and their family is always welcome. How this is done really matters. Is it done to tick off something from a pastoral to-do-list? Is the intention to solve the problem or sort out the situation? Even with the best of motives, such approaches don’t get very far. A disabled person and their carers will often have had years to think about practical and/or spiritual solutions. ‘Off the cuff’ suggestions are unlikely to be either new or helpful ideas. The offering of them results in an added burden of having to justify or explain their inappropriateness. Not only does this waste the carer’s limited available time and emotional energy, but it also reinforces feelings of isolation, and of not being understood. It becomes another battle too similar to all the other interactions with health and care professionals.
Even less helpful is any attempt to micro-manage the disabled person’s contact time with church. ‘If we free you up here, then surely it might be possible for you to be at this meeting over there.’ Caring for a loved one is overwhelming and all-consuming. Relieving one apparent pressure does not automatically mean being released to be more present somewhere else. Caring is not like basic arithmetic. Rather, it’s a complex algorithm with multiple layers of both external and internal variables or pressure points. Tweak one of these, and a whole host of others spin out of control. Or, caring is a bit like playing Jenga where wooden bricks are precariously stacked up on each other. As soon as you take away one of these bricks, it’s not long before the whole pile teeters and topples over.
Important, crucial and foundational to providing support to the disabled and family or carers is to listen. Then you have to listen and listen again. Keep listening! Effective support involves 90% listening to get a sense of what the needs and pressures actually are.
Once you’ve listened, help can then be offered in a concrete, specific, no-strings attached way. Offering to help on the understanding that attendance at a meeting is expected is, let’s be honest, insensitive and less than helpful. Freeing up carers should be so that they can have something they lack: freedom and time to do whatever they need to attend to such as a practical or admin issue that’s been hanging over them, or more importantly, for self-care. Listening is the key.
On the BBC ‘QI’ panel show, wrong or obvious answers trigger large flashing displays of the offending word to the sound of a loud klaxon. Never ever say, ‘Let us know if there’s anything we can do to help.’ This sets off the same cacophonic dissonant alarm strobing through a carer’s already overloaded head. These open-ended vague offers of help betray the fact that effective listening has not happened. Each disabled household is spinning so many plates, that this ‘offer of help’ becomes another one tossed into the mix missing its intended target. A carer then turns into a ‘Human Resources Manager’ trying to match up person X’s skill set to any range of possible tasks. On the rare occasions when the ‘carer-HR manager’ does follow up X’s offer with a specific proposal, this may be met with an apologetic ‘Sorry but I really wouldn’t be able to do that.’ At other times, just nothing, no follow up which is deflating at best, shattering at worst. Real offers of help will be specific, targeted, reliable, they will demonstrate a willingness to show up and get stuck in with no strings.
Strategic to all the above is the role of church leadership. Ideally fostering a John 13:1-17 context in which love in service of one another is modelled, exemplified and led from the front. Not doing it all themselves but galvanising and demonstrating what practical one-another-love looks, feels and sounds like. It should run through the regular preaching and teaching ministry, providing its tone and mood music. Not every week of course, otherwise people become desensitised to the power of this exhortation to love one another. Preaching one-another-love has to be backed up by the real-life examples of under-shepherds. The body of Christ needs to be engaged and brought along on this journey of caring and looking after and out for one another in a tangible, practical and sensitive way. No pressure 😉
Joni & Friends – https://www.joniandfriends.org/ministries/church-training-resources/ Ideas for starting a disability ministry
The Additional Needs Alliance – https://additionalneedsalliance.org.uk/ Helps “churches to include and support, young people and young adults with additional needs or disabilities.”
Michael Beates’ book Disability and the Gospel: How God Uses Our Brokenness to Display His Grace (https://www.crossway.org/books/disability-and-the-gospel-tpb/) is a superb outline of the Bible’s teaching on disability with some reflections on how this should impact churches
Together Through the Storm: A practical guide to Christian care by Sally Sims does what it says in the title (https://www.thegoodbook.co.uk/together-through-the-storm