Reconsidering Cultural Values for Caregiving Amid Shifting Demographics in Barbados

With a seeming rise in the prevalence of autism, increased understanding about living with other disabilities and Barbados having an ageing population, it is time to reconsider our cultural values for caregiving. There is currently an ongoing attempt to address various social needs through social policies, but we are not really discussing the underlying cultural value systems that explain our disconnect from each other and contribute to social problems.

What we repeatedly hear is that “you cannot legislate attitudes and behaviour” – a kind of resignation to an inability to have an immediate impact on caring and, thereby, relying on policies to enforce change, which will take time. It is as if we believe that we are powerless to influence people to be thoughtful, considerate, kind and caring to each other as Barbadians and not just to tourists. I think we can inspire change faster than it would take to enforce caring through policies. Unquestionably, we need to put the policies in place, but we also need to state and address a new ethos of caring.

One of the big things that influence attitudes towards caring is having respect for caregivers. In Barbados, caregivers are not respected. The truth is that we have a culture that only values paid, employed workers. We do not see that the person at home voluntarily caring for someone is making a significant contribution to society. We also do not see that the persons needing care are also making a significant contribution. We think of a contribution to society as being active, doing something measurable in monetary terms, having an obvious visible effect and impact. So, what is the person who is not out there working and actively doing things contributing? Caregivers, some people with disabilities, and the elderly may be invisible people not contributing to the labour market and economy, dependent on others who are workers. We have difficulty valuing the people who receive care and the people who give care to those in need of it.

We may speak of the elderly who made their contribution to Barbados and, therefore, now deserve our care, but we have not yet been able to consider what makes the disabled person who cannot or has not obviously contributed to the economy as a worker, deserving of an equivalent valuing and care too. We seem only able to think of such persons charitably, with low expectations for their present and future contributions.

So, what is the value of the life of any Barbadian, whether they are a worker in the economic marketplace, whether they are actively and independently able to contribute ideas to the culture, or not?

In our society, we have difficulty figuring out how to articulate the inherent worth of a person if they do not contribute to the economic marketplace. We do not have the language for it. That there are things about qualities in life, relational skills we need, interpersonal and interconnecting spiritual growth processes, and compassion for the human experience, that caregiving requires and engenders. Further, the capacity to manage the challenges of emotional intelligence, empathy, spiritual discipline, and relational co-regulation, which occur as a daily part of the caregiving experience, are of significant value to our society. We see those things as values to be taught at church but not values to be embedded into our national identity, ethos, and relationships with each other.

Perhaps that is a holdover from our history as a former slave society that only valued people by the work they could do for the economy, and discarded or dismissed those who could no longer work. However, caregiving becomes important when you are the person who cannot work and needs care, or when you are the person who has the responsibility of figuring out the care of another person needing support.

Caregiving teaches skills society needs

As a caregiver with over 15 years of experience, I can tell you that managing, supporting, inspiring, and uplifting the will and wellbeing of another human being is one of the hardest things to do in life. It is difficult as a parent of a child. It is more challenging when caring for a teenager or an adult who has the legal or ethical agency or desire, will and physical capacity to make their own decisions and not be treated like a child, (who in our culture we assume has less power), but who for various reasons may be unable to fully establish or express that agency or independence. How do we treat an incapacitated child, adolescent or adult with limited agency or independence with honour and respect, without infantilising, dismissing, and taking out the frustrations of care on them? We better figure this out quickly!

What caregiving involves

There are periods of temporary caregiving that many of us face. When you see family members making decisions about and managing the care of a loved one at the end of life, you get a glimpse of some of the stress of being a continuous caregiver to someone with chronic health or developmental challenges. Health challenges might frequently put a person at risk of worsening illness or death, like a seizure disorder or anaphylaxis or some kind of frequent medical crisis, or even as with some people with autism, a lack of awareness of danger. For conditions like those, you must be on alert 24/7 for any eventuality.

Childrearing necessitates the education of your child. A child who can attend school will have a significant part of their educational needs already established within the education system, but a child unable to go to school because they require caregiving at home still requires a certain educational experience. The person responsible for envisioning, conceptualising, and executing that is usually the caregiver parent.

Or if an adult has something like a stroke, they may need supportive therapies to regain skills, or to learn new ways of coping, but that may be facilitated by occupational therapy. Similarly, for a child, adolescent, or adult with a disability, they too might need therapeutic support that must be organised and facilitated. Of course, this is also dependent on access and affordability, but the primary issue is that someone must recognise the needs, think about those needs, plan a response to the needs and execute. That is caregiving!

The nitty-gritty of caregiving

Caregiving requires problem-solving skills, being solutions-focused, recognising when additional help or expertise is needed, what type of expertise is best in the situation and how to access that expertise. It requires an understanding of how to be resourceful within economic and resource constraints. Caregiving requires flexibility, creativity, emotional regulation, patience, tolerance, determination, commitment, sacrifice, a sense of purpose and faith. It also necessitates breaks for your own self-care and respite.

However, we tend to treat caregiving as an automatic, expected skill of family members for their loved ones, like a parent raising a child, (although we frequently hear public cries for the need for parenting support). Caregiving is not simple. It draws from a very different skill set from parenting and general family life, though having some interrelated aspects.

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.