Disability: The Full-Time Job I Didn’t Sign Up For

In today’s busy world, where we can “opt out” of many societal annoyances, one thing a disabled person can’t opt out of is the extra daily tasks required just to exist. 

From the moment we wake up, it’s time to clock in. Managing a care team, supporting a rotating staff of personal care attendants (PCAs)—people we literally need to get out of bed, navigating medical expenses—the tasks never end. It’s something we steer every single day just to live, and it’s a whole full-time job in itself. 

A job that isn’t optional—one we didn’t apply for, nor do we reap any benefits from. The position doesn’t warrant any vacation, no paid time off (PTO), and no opting out of responsibilities we didn’t sign up for.  

From the outside, things like prime parking spots or cutting the line may seem appealing in brief moments. However, those perceived “disability perks” don’t outweigh the demanding daily obligations we carry—often on top of actual paid employment. 

Let’s break down some of the routine tasks that can make up a day in this tireless, unpaid role. 

Managing a Care Team 

A person with disability may have complex medical needs requiring care from multiple specialists. Each appointment needs advance planning, prior authorizations, referrals, prescriptions, and an array of ordered tests—an exhausting list of prerequisites for just one visit. 

Scheduling these highly specialized appointments can take a significant amount of time. Calls often involve being bounced between departments, and navigating automated prompts that don’t quite fit your needs. When an actual human does surface, it still typically leads to long holds, transfers, or being redirected, so no one has to deal with you.  

You’re then left leaving voicemails that disappear into the void. If someone does respond, it often turns into an endless game of phone tag with an assistant who’s only available during a narrow window of the day. Catching them at the right time is an impossible stroke of luck. 

If you manage to secure an appointment, it’s often weeks, months, or even more than a year away, which can be daunting. That waiting game can be emotionally and mentally draining. 

All of this effort is still just for one doctor, for one appointment—and you haven’t even gone yet.  

These skilled doctors may not even be in the same vicinity as you, meaning travel to a different city or state is required just to see someone proficient in your unique care needs. This adds another layer of coordination, including transportation, lodging, and insurance approval for out-of-state care. Securing appropriate medical treatment often feels like an all-out fight for something you are inherently worthy of. 

Now imagine repeating this process for multiple doctors, several times a year.  

Are you tired yet? Ready to clock out? 

Managing Your Personal Care Attendants (PCAs) 

For individuals with physical disabilities, PCAs are essential for completing activities of daily living (ADLs). These caregivers don’t simply appear. Most people cannot sustainably afford them out of pocket and instead rely on government-funded programs like Medicaid, which require extensive qualification processes and ongoing eligibility maintenance. 

Once approved, care options vary. Some individuals work with home-care agencies that manage the majority of the process, while others use self-directed programs, where the individual is responsible for everything. 

For those on self-direction, this means recruiting, training, scheduling, and managing your own care team. Responsibilities include creating shift schedules, outlining daily tasks, completing payroll documentation, and adhering closely to program rules and policies to ensure continued services.  

It’s essentially running a small business—just to shower, get dressed, and prepare food—tasks people complete without thinking twice require careful planning and coordination for those who need extra assistance. 

Getting worn out yet? Ready to call it a day? 

Navigating Finances and Out-of-Pocket Medical Expenses 

Durable Medical Equipment (DME) includes medical devices and equipment such as mobility aids, respiratory supplies, diabetic supplies, and home medical equipment. Many individuals living with physical disabilities rely on one or many forms of DME. 

While these items are, and I say this loosely, generally covered by insurance, certain brands, features, or models are often deemed “not medically necessary,” defaulted by the system, and you’re slapped with denial letters and lengthy appeal processes. Individuals are then left to justify their needs to a review team that usually views them only as dollar signs in their budget, instead of a human in need of an item to thrive in their environment; it’s a system that often prioritizes cost over lived experience. 

Many people also require consumable medical equipment and supplies beyond what insurance provides. Items such as Personal Protective Equipment (PPE), masks, catheters, feeding supplies, and glucose sticks frequently come out of pocket—and those costs add up quickly.  

Another expense. Another responsibility. Another part of the job required just to exist. 

Ready to punch out, or still going strong?

Transportation Navigation 

Public transportation and rideshares work for many, but not everyone. In suburban or rural areas, accessible transportation options may be limited or nonexistent. For some individuals, an adapted vehicle is the only reliable option. 

Adapted vans can range from $50,000 to well over $100,000, depending on the equipment needed. While some assistance programs exist, like local vocational rehabilitation agencies, the qualification process is long, tedious and can take one to two years to complete.  

Owning an adaptive vehicle is often viewed as a coveted luxury within the disability community because of how difficult it is to obtain. Yet this “luxury” simply allows someone to attend appointments, visit family and friends, and participate in daily life—things everyone should have the freedom to do.  

The effort is significant. The cost is high. But the need is essential. Would now be a good time to call it a day? 

The labor is relentless. There are no days off, no clocking out, and no grand paycheck waiting at the end to look forward to. Every task takes significantly more time, planning, and energy than most people ever realize. 

The harsh reality is that people living with disabilities are always working. We manage a team of doctors, coordinate our own care, budget medical expenses, and figure out how to get from one place to another—and that’s just our daily life. Every. Single. Day. It is forever ongoing. 

Within the realms of this position we’ve been handed, we advocate for ourselves and our basic needs while keeping up with the fast-paced society we live in—and we still show up. It’s a duty we didn’t actively willingly check “yes” to, or have the option to decline, yet we do it all with the utmost grace anyway.