How Caregivers Make Independence Possible

Living with Spinal Muscular Atrophy type II, I’ve utilized caregivers throughout my entire life. Family members and loved ones, nurses, and even friends not only help me thrive, but more importantly help me perform the essential tasks of daily living. And I’m not alone. Disabled people across the world rely on caregivers for both temporary and permanent disabilities. Not only am I going to share how caregiving has impacted me, but Easterseals’ Editorial Manager and co-host of the podcast Everything You Know About Disability is Wrong, Erin Hawley, also spoke with me about what caregiving means to her.

Independence Through Others

Spinal Muscular Atrophy type II is a neuromuscular disorder that progressively weakens muscles over time. As such, my independence has fluctuated throughout the years. Where I once was able to feed myself, handwrite, and cruise around my neighborhood in my wheelchair without help, my muscles have deteriorated to the point where I now need an extra pair of hands. Bathing, dressing, eating, drinking, repositioning, and even turning in bed at night are all activities that fully require somebody else’s assistance. However, despite not being in control of my body in the physical sense, my caregivers enable me to live a fulfilling life.

My computer and gaming systems are the only true spaces of independence in my life, if a caregiver appropriately positions my hands on each device. With assistive technology, I can fully operate everything, ensuring I can properly perform my duties as a reporter, play games with friends, and even spend crucial time with my long-distance partner. With caregivers, I don’t need to fear being unable to access my devices. I can use my energy for myself rather than spend it on tasks I may not be able to perform.

Outside of my home, caregivers like my mother, father, partner, nurse, and friends allow me to enjoy life. From exploring new restaurants, museum exhibits, game shops, or even the monthly diner meet-up I have with a group of local friends, caregivers provide a level of independence not attainable by myself. Independence isn’t just in the physical sense—it’s about control of one’s life. While I’m unable to perform any physical activity independently, I know I can confidently live life alongside my able-bodied friends and family because of my caregivers.

Yet, having a loving support team isn’t always easy. As someone who constantly needs to rely on others in some form, I am forever on somebody else’s schedule. Everything from leaving my house, to eating, to even toileting are all reliant on when a caregiver is available. Admittedly, this has led to immense moments of frustration. These feelings are further compounded when I’m acutely aware of my caregivers and their own needs. My mother, my primary caregiver, is 66 with her own bevy of health-related disabilities. If she is unable to assist, I simply don’t do the activity I wanted at that moment. And this isn’t a cry for help. Rather, this is a very real, necessary insight into the disabled experience. If no one is around to help, many disabled individuals wait until assistance is available, modify the activity to benefit caregivers, or even forgo something altogether.

The Value of Care

Like me, Erin Hawley is dependent on caregivers. She notes that the caregiving she receives is the only way she can have any independence, and extensively relies on the support of loved ones to properly perform the tasks of daily living. From bathing and sleeping, to accessing technology for work, and even leaving home to travel, her support system gives her the tools to be independent. Yet, contrary to assumption, Erin explains that needing caregivers doesn’t decrease her independence.

“People who don't know me well, or at all, assume that, because I need so much physical care, that I can't be independent,” she said. “That simply isn't true. Independence isn't weighed by how much care you need, but by how you are able to make your own choices and steer your life. Caregiving is just one part of how I direct my life, and within that caregiving, I make decisions: what I want to wear, what I want to eat, what time I want to get out of bed, where I want to go, and how I want to spend my day.”

This level of direct decision-making is crucial to the lives of so many disabled people like me and Erin. Our independence is not solely tied into what we can or cannot do in the physical sense; rather, it’s how we choose to experience each day. However, caregiving is not without its challenges. For Erin, this includes navigating the agency of her caregivers. If schedules conflict or if a caregiver’s health impacts her support, this can lead to disruptions to her daily routine.

“I have many caregivers in my life, including my parents and my partner,” she said. “My parents are in their 70s, and my partner has their own disabilities that they must consider. My caregiving crew work together to cover each other and ensure everyone's needs are met. Sometimes that looks like rescheduling appointments and trips to account for their needs. Sometimes it looks like not taking a bath for two weeks because my mom is sick. Even though these moments are not always fun, it's our normal.”

Caregiving is a natural part of the disabled experience. Whether it’s from loved ones or professional support, caregivers are a necessity for every disabled individual. While frustrations are sure to occur, caregiving is about loving and supporting each other. It’s about navigating difficult moments knowing someone is with you along the way. It’s also about acknowledging the differences in lived experiences. Disabled people rely on care, and it looks different for everyone. And as Erin notes, caregiving is ultimately about community.

“Everyone receives caregiving or is a caregiver in different ways and in different capacities. No one lives in a vacuum; community care is how we all survive and thrive. It just looks unique for every person.”