Caring for the Caregiver?

All along I have been writing about the missing disabled perspective from the media narrative. How the society (and media) overlooks issues surrounding disability, challenges faced by the community, resulting in their absence from the mainstream scheme of things.

But there is something that finds even less of a mention in discourses around disability and healthcare:

Caregiving

Without which daily existence of many can turn into a nightmare.

Persons with disabilities are portrayed in a stereotypical fashion, either glorified or demonized, commended for their success or pitied for the lack of it. If nothing, they have been labeled as a minority. But truly faceless and invisible are their caregivers.

It’s the caregivers who make it possible for 15 percent of the global disabled population to get by on a daily basis, helping with waking up, showering, eating, interpreting, commuting and more.

A 24-hour job

For a family caregiver, it’s a 24-hour job that needs patience, attention to detail, a bit of humor, and most importantly, compassion. Not every caregiver may have all those traits, so they have no choice but to cultivate them.

During the first two Covid waves, governments and citizens across countries put up a show of support in their own ways, for the caregivers. These were nurses and doctors who are paid for their service to humanity. While the gesture of gratitude was heartwarming and necessary encouragement, I wished we recognized the millions of anonymous supporters who work tirelessly, without pay. Their motivation is sheer love for a dear one who may be sick, old or disabled.

In order to attain independent living with a sense of dignity, persons with disability must have a strong support system in the form of parents, teachers, siblings and friends. A child on the autism spectrum or born with a learning disability, a hearing or vision impairment, cannot make sense of the world without an empathetic parent. Similarly, a person with a chronic medical condition cannot go through life without a caring family.

It’s great to celebrate the disabled folk who make it despite all the hurdles in education, employment and social environment. But what about the millions rooting for their triumph? Don’t they deserve an applause? Don’t they traverse the same path ridden with obstacles?

As a caregiver, I have never really deliberated on how different my life is from someone who doesn’t have such responsibilities. Probably because there has never been a need for comparison.

Since childhood I have known and accepted this to be my ‘normal’. It has shaped me into the person I am. A natural empath, caring for another’s physical and emotional needs, at times more than my own.

Is it easy? Definitely not.

Shelving personal needs and dreams

Caregivers face the risk of shelving their personal needs and dreams. Often overwhelmed with the chores that drive their routine. I don’t have any regrets, nor do I feel compromised in any way. But I must confess, it feels a bit lonely at times.

As much as we talk about mental health these days, why don’t we have peer help groups for caretakers? Why aren’t the struggles of empaths acknowledged and normalized? Why aren’t there any mechanisms in place to support the primary attendant?

If disability and chronic illness hamper the standard of living of the person affected by the condition, it also significantly alters the lives of people around.

In fact, some such issues have been highlighted in films and books showcasing disability themes. Some characterizations highlight the complexities and dilemmas that are inherent to the lives of caregivers. Their choices oscillating between personal aspirations and the overarching needs of another.

Compassionate warriors

In the post-Covid world, caretaking has taken on new definitions. With more and more people experiencing deteriorating health on a physical and mental front, we need compassionate warriors to stand the ground. It can only help to celebrate the unsung heroes, those who go about business without expecting or complaining.

Can the media ensure that the caregiver’s everyday battles are not dismissed or forgotten?

Shruti Pushkarna is a Programs and Media Specialist working towards Disability Inclusion. As a primary caregiver herself, she strongly advocates for equal rights and dignity for persons with disabilities and people living with chronic illness. She is a former journalist with extensive experience of producing television and digital content. She believes that the only limitation in life is our imagination. And the fight against discrimination and exclusion is about altering collective societal mindsets. This article first appeared as Time to empathise with the caregiver? at MxM India