'The language of being human' by Poet Ali.
Do you speak Caregiving?
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I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?
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Some of you are already very familiar with the language of ‘caregiving’. Those of you who are/were caregivers may speak a dialect of the ‘caregiver language’ - being a parent, eldercarer, or caring for a loved one with a chronic disease or illness. Perhaps you’re becoming increasingly familiar with the basics but having trouble deciphering the common phrases or meanings.
For others, caregiving may be a completely foreign language. But we all need to achieve some basic knowledge of this language. As Rosalynn Carter, Former First Lady of the United States said:
“There are only four kinds of people in the world—those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” -
Through Carer Mentor, I translate some of my experiences and share those of others to bridge the language gap and any potential barriers, misperceptions or misunderstandings. After all, caregiving is what Prof Joan Tronto calls a ‘Species Activity’.1
A Ted Talk by Poet Ali, the language of being human into a fresh context.
July 2019 Ted Talk Edinburgh, UK
Poet Ali is a compelling performer and identifiable speaker who inspires people to approach and understand their problems from unique perspectives. His performances, presentations and writing focuses on the human spirit. He pulls relatable moments from a reservoir of life experience and anecdotal story-telling. Ali's "soulosophy" is heavily based on using our gifts as catalysts for self-discovery and the facilitation of human well-being. The subjects tackled in his presentations vary, but they always relate to matters of human connectivity and the human spirit.
I highly recommend watching the video in one sitting to fully experience the talk. (Duration: 14 minutes and 55 seconds.)
Poet Ali quotes to ponder.
‘Sometimes we think language is about understanding the meaning of a word, but perhaps it’s about making a word meaningful for yourself.’
‘We take any new concept and filter it through an already existing ‘access of reality’ within us. It’s why languages are so important, they give us access to new worlds, not just people. It's not just about seeing or hearing; it's about feeling, experiencing, and sharing.’
‘Language of experience is when you're talking with someone, and if they shared something you've shared, you don't need to explain it much.’
‘I challenge you, when you see someone, to ask yourself: ‘What languages do we share?’ And if you don't come up with anything, ask yourself ‘What languages could we share?’
And if you still don't come up with anything, ask yourself ‘What languages can I learn?’ And no matter how inconsequential or insignificant that conversation seems at the moment, I promise you it will serve you in the future.
A personal reflection and translation.
When I had a work-endowed title of Vice President, a 14-16-hour work routine, headhunters on speed dial, and a lovely salary, the economics of my experience were a ‘language’ that, in hindsight, was more socially acceptable and easy to understand and thus, communicate.
There is a fundamental reason caregivers, or ‘unpaid carers’ (as we’re called in the UK), prefer to connect with other caregivers or those ‘who’ve been through it’. It’s easier and more comfortable. The lived caregiver experience is a language that can feel too complex to translate to someone else, especially someone who doesn’t speak ‘caregiver’. Full of paradoxes, it is unique to the individual but has common themes, and often spoken words fail.
The language of work and economics doesn’t apply to caregivers. Just ask any unpaid carer, or rather, don’t! The finances and ‘value’ are unbalanced in the UK.
Since the language of economics doesn’t connect us to mainstream discussions, I find those without lived experience try their best to extrapolate into a language they do know, like productivity, efficiency, resources, assets, solutions or optimisation. Although these may be well-meant wishes to help, the concepts are mismatched. Just like ‘Faux Amis’2 in French, the same or similar word is not correct or applicable in the caregiver language.
What does a good productivity of helping someone pee or poop look like? How do you measure empathy? Care can’t fit into a transactional paradigm, a balanced equation, or a Profit & Loss sheet.
These are all throwbacks to the Industrial Revolution, which turned human endeavours into economics of scale, profit, and status. In her book, Emily Kenway has forensically researched how we got to this disconnect. ‘Who Cares: The Hidden Crisis of Caregiving and How We Solve It’3 Ai-jen Poo, Executive Director of Caring Across Generations, articulated key insights in her interview with Chris Hayes (MSNBC)4
The Caregiving Problem: an increased need for care has outpaced the change in policies and infrastructure. There is a hidden crisis as caregivers struggle to do everything themselves; long battles with bureaucracy and complicated access to care support exhaust whatever energy remains after working. This is compounded by financial worries. So, conversations are ‘put off’, and denial and discomfort simmer until a medical crisis occurs.
An infrastructure of economics doesn’t connect with human needs, a species’ activity of caring. The historically outdated construct can’t accommodate or match each family's needs. And, unless leaders holding policy or purse strings understand the caregiver language, needs and solutions are mismatched; faux amis.
Whilst I hope we can advocate for changes in policy and with governments -especially in an election year- I’ve seen the most powerful, practical solutions being made by two or three people connecting, aligning and sharing daily tasks and errands, such as shopping, collecting medications, making meals for others, and driving to medical appointments.
The Idea: There is a collective need for social change, and we can start by changing the narrative around care and caregiving.
Can we start having more discussions within our families and with others and creating solutions in our communities?
To facilitate this, we need to connect our language, and the first place to start is to listen curiously and with an open and naive heart. Let your heart connect in empathy first, and pause your head full of questions. This is especially true when discussing care with your parents.
Imagine facing mortality, becoming less independent and less capable. They know it, even if they may appear to be in denial. Walls are a first line of defence. Let them lead the pace of disclosure and request for support. Ticking boxes may feel sensible, but trying to project manage someone’s feeling of mortality will likely backfire.
A few Do’s and Don’ts as an adult child to your parents.
Practice active listening: create space and time for a small discussion without distractions.
Don’t build expectations or pressure yourself or your parents to find immediate solutions. Manage your expectations and those of your parents. ‘I’d like to understand better…’ or ‘I have a friend whose parents had a medical emergency. Can we discuss what you want to happen…or I want to make sure I understand your wishes?’ Start, seed, discuss, confirm (write a couple of simple clear notes), seed, confirm, discuss, confirm - you get the drift.
Don’t say, ‘You can’t do that anymore.’ Don’t beg, ‘Please for me; you’re scaring me.’ Emotional blackmail is an unproductive communication and relationship strategy! Put yourself in their shoes and ask how you can help.
Don’t tell them what they should need, do, or feel; instead, ask them what they’d like you to help with or what they need from you. Check your motivations and behaviour. Are you pushing what you want for yourself, e.g. to feel more comfortable? Are you suggesting something because it’s how you’d do things for yourself? Do you want to prove a point to them, yourself, or others OR facilitate the wishes of your parents?
Don’t forget that anything new is something they’d need to learn or get comfortable with. Sometimes, the long, time-consuming option that they know; their way is best because it causes the least stress.
In our situation, I could be the one to bend, adapt, and mould to their needs. However, this is not true for everyone, and our relationship dynamics evolved over many conversations.
Often, parent-child relationships and families experience a lot of angst, fear, and miscommunication until some primary language and conversation boundaries are clear.
Here’s a useful video from Carers UK about planning ahead.
The language of being human enables us to seek out more conversations and connect/share more empathetically about caregiving. We need to talk more and shift the narrative away from economics and towards having a care-focused community. I hope you’ll speak more caregiver language with your family, friends and communities.
Do you have a communication tip or learning you could share about caregiving?
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Faux amis (fake/false friends) are words that appear to mean the same in different languages but actually have completely different meanings. Example: Un raisin (french) is not a raisin in English (is a grape).
My experience has been as both a professional healthcare provider and as an elder caregiver, and I’ve seen that some topics are best broached by a professional. I’ve often volunteered to bring something up with an elderly patient, suggesting to the daughter or son that it might be better received coming from a professional. As a caregiver for my Mom, I’ve seen her completely disregard my suggestions but take the same ones from a professional. My tip to caregivers: go for what works even if it’s a little bruising to your ego. Also, humor works wonders.
This was so powerful - thank you for sharing your story and your experience! Poet Ali has some lovely ways of describing the power of shared experiences that most others couldn't probably put in words