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I am Jennifer Barrett Fajardo

a friend of someone we've lost to ALS,
caring for someone living with ALS

Hawaii


But despite the fact that my husband still works full-time (and is a rock star at his job), ALS continues to steal away his physical mobility--and with it, his ability to do simple things we take for granted throughout the day.

It feels uncomfortable to describe myself as a caregiver to my spouse. The word doesn’t quite seem to fit. But despite the fact that my husband still works full-time (and is a rock star at his job), ALS continues to steal away his physical mobility–and with it, his ability to do simple things we take for granted throughout the day.

Open a heavy door (while on his mobility scooter).
Walk unassisted.
Carry a heavy coffee mug across a room.
Confidently navigate a curb or stairs.
…and so much more.

I’ve previously traveled with a friend and colleague with a missing limb and it opened my eyes to how far we still have to go to fully embrace and fulfill the intentions of (and commitments made by) the Americans with Disabilities Act. Now that I’m living it every day alongside my partner, I continue to see opportunities and am learning to become a better advocate.

When José first received his ALS diagnosis, we sought to develop a swift and intentional plan to share the news publicly — starting with his board and staff — to allay potential fears about his ability to continue in his role. While many may question why he would WANT to continue working, the important question is actually CAN he continue to fulfill his duties and, if so, it should be his choice to make.

Doing radio was a childhood dream and serving in public radio has become his passion. Fortunately, his physical limitations don’t take away from his ability to continue to excel in his role. Unfortunately, many of his other passions (running, traveling, etc.) have been–and will likely continue to be further–curtailed.

And so, for now, he continues to find purpose in his work and lead the organization to new heights. I’m incredibly grateful that his board has shown confidence in his leadership despite his waning physical abilities and want to see more people living with ALS given the same opportunity and treated with the same respect.


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