The Unpaid CEO: Living with Disability in an Ableist Economy

A physical therapist once said to me “A disability is a disability” (context: she was trying to encourage me to do something I insisted I wasn’t comfortable with). At that moment, I knew I was receiving care from someone who was unqualified to help me, and could even lead me into a dangerous situation.

Imagine someone who is a good driver climbing into the cockpit of a commercial jet plane with the mentality of, “a vehicle is a vehicle.” Would you feel safe boarding that plane?

No two human experiences are the same, and therefore, no two disabled experiences are the same. The nuances in ability, intensity, progression, and consequence vary greatly, even between two people sharing the same diagnosis. A daily experience for me would be different from anyone else with my same diagnosis.

The Need for Competent PCA’s

There is a great need for Personal Care Assistants (PCA’s) or other professionals who are able to develop a nuanced approach to caregiving. 

“Care” is helping an individual satisfy their basic needs so they have a fighting chance to participate in society. Without this care, those living with disabilities are continually playing catch-up with their friends, peers, and co-workers.

It’s not uncommon for a person living with a disability to foot the bill for extra costs of participating in a working society full of barriers. Consider the following two examples:

• In New York City, rideshare companies such as Lyft and Uber are required to dispatch 25% of their trips to wheelchair-accessible vehicles (WAVs), or satisfy 90% of wheelchair-accessible vehicles requests in under 10 minutes. (Quest Magazine, 2025) Even then, those WAVs might not be available when the ride is needed. And what about small towns/ cities where these laws aren’t yet enforced? 
• Even with ADA legislation requiring airlines to accommodate wheelchair-using passengers with little to no notice, the risks of mobility equipment becoming damaged is pervasive. This would be equivalent to a non-disabled person suffering an injury during a flight.

Footing the Bill

There have been countless occurrences where I’ve had to spend extra time, energy, and money ensuring my rideshare could a) fit a wheelchair in their vehicle, b) would be willing to fold and lift my wheelchair into their vehicle, c) would be willing to lift me into the vehicle, d) hope my wheelchair doesn’t get damaged in the process, and e) I don’t get injured.

Consider a typical job where one is expected to arrive at 8 AM looking their best and ready to work an 8-hour shift. For someone like me, this would take a great deal of sacrifice, often not proportionate to the compensation.

In fact, many non-disabled people experience this type of sacrifice with 1-2 hour commutes to and from work everyday, but they just accept it as part of the job. That’s no longer an 8 hour work day, that’s a 10-12 hour workday with 4 of those hours going uncompensated.

Disable People Are Unpaid CEO’s

Disabled people are engineers, managers, and CEO’s of their own company, that company being their body-mind and survival of that body-mind. The organization is our body, and we must employ and manage the right people. We then set schedules, delegate tasks, and take the hit for any mishaps or risks. Except, we don’t get paid millions of dollars in this CEO role.

CEO’s get their own office, and are intentionally difficult to access. In contrast, disabled people have to let many people into their homes, and must be endlessly accessed. This takes an inevitable toll on mental health.

As engineers, when adaptive equipment is either too expensive or not available, we must invent our own solutions, or hope we can find an engineer with similar expertise to pass on their knowledge or resources.

Remember: no two human experiences are the same. I won’t go into the details of how many times I’ve had to re-engineer how to use the bathroom or get dressed in the morning. Just know that we’re out here meticulously planning the things most people are able to do unconsciously. 

If society would more readily foot the bill for disabled people – the unpaid CEO’s – the benefits would quickly outweigh the costs: 7% of the GDP is the estimated loss per year of exclusion of disabled employees. Closing the employment gap between disabled and non-disabled workers could improve the economy by $25 billion per year.

A Message to “Non-Disabled“ People

If anyone is ready when tragedy strikes, it’s disabled people. When you become disabled, as everyone will at some point in their life, there are many challenges you will have to face. If you are lucky enough to have friends and family help you in your recovery process, that is a blessing. But what if there is no recovery? Chances are people will soon get tired of helping, maybe even start to blame you for the lack of recovery. Chances are you’ll need the advice of a disabled person, a professional of locking down resources, re-engineering life, fighting through stigma, and dealing with isolation.

To employees: able-bodied individuals are often the least prepared and competent at dealing with injury, sickness, and job loss. This is why my message (and none of it is new) needs to be heard especially by non-disabled people, and why they are my primary audience.

And employers: consider this the next time you have the choice whether to accommodate a disabled person, or foolishly make the uninformed decision that the costs won’t outweigh the benefits. Exclusion is expensive, inclusion is profitable.