My Disabled Hands Are My Source of Income

Your body can retire from your occupation before your mind is ready to.

This is perhaps one of the cruelest aspects of progressive disability.

As my hands have become less capable, I have become more experienced.

I know more than I did twenty years ago. I have solved more problems. Made mistakes and learned from them. Developed judgment. Built knowledge that cannot simply be downloaded into somebody else's brain.

My physical disability gets in the way of my professional ability

Professionally, I have more to contribute.

Physically, I can do less.

Those two lines have been moving in opposite directions.

To substantially remove the repetitive hand demands from my work would require a fundamentally different kind of role — one centered on judgement, direction, review, mentoring and decision-making, with other people available to perform much of the hands-on execution.

That isn't simply an ergonomic adjustment.

It is a different job.

And such a job doesn't automatically appear because someone's body can no longer perform the occupation they spent decades learning to do.
I have spent more than two decades working in a corporate environment, much of it in brand and marketing roles.

Mine is classified as sedentary work.

I sit at a computer.

My hands are my tools at work

But my hands don't know whether an activity has been classified as "sedentary" or "physical." They only know what I ask them to do.

Typing. Clicking. Scrolling. Dragging. Opening attachments. Editing documents. Working in spreadsheets. Preparing presentations. Searching through files. Moving between applications. Answering emails. Holding and operating a mouse.

Again and again.

Psoriatic arthritis and repetitive movements

One mouse click is insignificant. Thousands of repetitive movements are something very different when the joints performing them are affected by psoriatic arthritis.

My legs may be resting beneath the desk. My hands are not.

I can type. I can use a mouse. I can write an email. I can prepare a presentation. I can participate in a meeting.

Watch me do any one of those things, and you could reasonably conclude: She can do her job. And you would be right

There is a profound difference between "can do" and "can sustain."

But you would only have answered the first question.

How long can my hands work

Being able to perform an activity does not necessarily mean I can perform it repeatedly, safely and sustainably.

• For how long?
• How many times?
• At what intensity?
• What happens as the day progresses?
• What happens tomorrow?

My hands are impacted for use after work

And what does doing it cost me afterwards?

My hands don't reset when I close my laptop. The hands I use for work are the same hands I need when work finishes.

There isn't another pair waiting for me at home. I need them to prepare food, hold cutlery, dress, shower, use the bathroom, hold my phone, and care for myself.

Measuring my ability to cope

For years, I measured whether I was "coping" by whether I got my work done. I finished the presentation. Answered the emails. Attended the meetings. Met the deadline.

Therefore, I must be coping.

But I was measuring only the work. I wasn't measuring what the work left behind.

Struggling with basic tasks

If I can complete my working day but doing so leaves me struggling with basic activities of daily living, what exactly does "able to work" mean?

This is where my journey has now taken me.

My job depends on my disabled hands

The occupation I have spent decades learning and becoming experienced in fundamentally depends on my hands.

The computer isn't an incidental part of my job. It is how the job gets done.

Emails, presentations, reports, spreadsheets, research, documents, systems, administration, reviewing, editing, keyboard work, and mouse work aren't peripheral duties that can simply be removed.