Much of caregiving is invisible.
We can see how the workplace can be affected by absenteeism of employees who have to care for family members. This is seen in the current context of increasing Alzheimer’s and dementia or providing child care for those with autism and other disabilities. But we do not equally see those who do stay home to care for loved ones or housewives as valued caregivers. Because caregivers do not have visibility, they also do not have priority, respect, and support, at least not in the public national discourse.
When we celebrate a centenarian, we focus more on their long life as a Bajan – and that is extremely important. We see information about their diet and lifestyle that contributed to them reaching that milestone. We hear about the things they can still do for themselves and rightly, the focus is on them. But we do not really focus on the people who supported them to reach that milestone. They are often a part of the family photographs, may be part of the news report honouring their family members; however, how often is their caregiver experience a part of the story, to understand what they must do, organise, negotiate, and give up to facilitate the necessary support for the centenarian to reach that point?
My specific experience is as a mother of a young adult with autism. When we focus on the highest level of functioning of people with autism and maintain the invisibility of those for whom it is more difficult to organise and provide care, we sustain a culture of keeping difficult relational dynamics that require caregiving, invisible.
Judging the failing caregiver
Then we are surprised and upset when the elderly are left at the hospital, and some children and people with disabilities are abandoned or abused. It is because we do not have respect for and sensitivity to caregiving and what caregiving really involves. It is easy to judge but not easy to do yourself as a life choice, to be in direct, hands-on, indefinite service to others.
If you abandon someone you should be caring for, there is a public outcry, but if you sacrifice to care for them, you are invisible with little support. Recent years have seen an upsurge in paid caregivers as legitimate workers, but assumptions are made about voluntary family caregivers that maintain their invisibility and worth to society.
It cannot be right or fair to judge people who struggle and fail at caregiving. If you never valued that caregiving was something very difficult to do, but necessary, or felt a responsibility to help caregivers, or considered that “there but for the grace of God go I”, you cannot understand the value of caregiving. Elder abuse might be less if we valued caregiving and caregivers could feel proud, appreciated, and recognised.
Caregiving as an asset
In a Barbados with an ethos of caregiving, parents of children with disabilities would not have to work so hard to get people to care, assist and support them, or do so much to make things happen for their children on their own. With an ethos of caregiving, setting a high bar for quality of life and success expectations for every citizen and every child would be a critical value of our nation.
An ethos of caregiving would empower parents of children with disabilities and the adult children of parents with disabling conditions. It would be responsive to family caregivers and incorporate their vision in a team approach, collaborating with experts supporting the optimising of health and maximising of potential and wellbeing of everyone with autism, or any other disabling condition.
An ethos of caregiving could see our families coping with autism with compassion, not as invisible and often hidden away at home. We would not have to keep making big statements and trying to get attention to the cause with pleas on radio shows and television. Instead, our families would be respectfully engaged with a sense of responsibility to us as common citizens in this together.
Misunderstanding the value of care
We use notions of care callously and devoid of a true appreciation of what it means. Corporate values propose the appearance of ‘customer care’, but not necessarily when you really need it — more like customer administration by another name. When you need a discount, or a waiver, or a donation, or your electricity kept on, you really must work hard for that, and still may not get it. At that stage, it is business as usual and the financial bottom line.
It has become very difficult for the small NGOs that operate from heart, care, and support of caregivers to remain operational. These days, a charity must operate like a business and so many people who have been inspired to share from their heart and just a deep care to help others can no longer do so. Business, caregiving, and the ‘business of care’ do not always merge successfully.
How do we value caregivers?
To see and value caregivers, we need to be interested in their stories, too. Many, not all, family caregivers are women, and caregiving for family members has often been seen as women’s work – expected, automatic, unpaid work. The women who are working outside of the home can be visible and celebrated but those who work 24/7 as caregivers in the home often remain silenced, invisible, and undervalued.
There is a tendency in stories about autism in the media to favour representation and acceptance of the two easiest stages of cute, young children and high-functioning teens and young people. There is a need for all levels of severity and needs for support to be more visible and represented from birth to old age, severe to high functioning, low support needs to high support needs, easy to complex cases, and privileged to underprivileged. It is also those who are non-verbal, self-injurious, incontinent, anxious, engaging in repetitive behaviours, with no intervention support who remain invisible to most while their families manage mostly alone with stressful, private, heroic caregiving. If you only acknowledge the best-case scenarios, there is no reason, motivation, or care to look deeper to see the true complexity of need and urgency for a better understanding of challenging continuous caregiving.
As the mother of a medically vulnerable son with autism, I know a lot of other mothers like me caring for their children, creating flexible working arrangements, managing small businesses or side hustles from at home, while being supportive and encouraging to others. Even those who do not engage as entrepreneurs often serve as medical semi-professionals and lay nurses, administering medicine; preparing and sourcing ingredients for special diets; facilitating and attending doctors’ visits and translating medical guidance into executed care, while educating children who cannot be educated in formalised school settings, often also having to figure out how to perform therapeutic activities for their loved ones when they cannot afford to pay for professional intervention.
Caregivers of people of all ages often engage in bathing, managing hygiene, toileting, feeding, lifting, changing positions and many other tasks. We can see a paid caregiver doing just some of these things as valued work, but not a family member choosing to serve their loved one – and with it, our country – in this way. It is important to be aware that many mothers who are caregivers of children with special needs become donors to charities, volunteers, teachers at special needs schools, or special needs advocates, expanding their caregiving skills beyond their children to helping others.
There are caregivers like me who are layman researchers, finding answers to their loved ones’ complex medical problems, by forming linkages with experts overseas for answers to their children’s or family members’ ailments. We are very busy researching on the Internet, watching webinars, on Zoom meetings, communicating with other families and medical professionals overseas, trying to find how to get needed expertise here to fill the gaps in medical knowledge and practice, and finding ways to get to experts overseas. The wider public might not see it, but all of that is what many caregivers do.
So, again, I ask what is the value of the life of any Barbadian, whether they are a worker in the economic marketplace or not? That is what we really need to know. The elderly person with Alzheimer’s, the children with disabilities, the person with Level 3 autism requiring the most support for daily living, and the Barbadians requiring caregiving and their caregivers. What is their value to Barbados, and can their value and worth hold unchanged, even if their circumstances never allow them to join the workforce?
Caregivers provide a lot of unseen benefits to Barbadian society! Can you imagine a Barbados without caregivers?
Caregivers, it is time to tell our stories and it is time to establish a new ethos and priority of caregiving in Barbados.
Deborah Thompson-Smith is Executive Director of Spectrum Possibilities, a registered charity that supports people with autism spectrum disorder (ASD) and aims to remove obstacles to their integration into society.
