A wake-up call for deeper understanding of those who suffer
Our response should be greater compassion and more accommodations
A quiet evening at home recently threw me for a loop. My wife, Jill, and I were relaxing in our living room, watching a reality TV show, when one of the cast members used the term “woke” to insult someone.
Without missing a beat, Jill looked at me with genuine curiosity and asked, “Carlos, what’s with the word ‘woke’? Why do people use it as a weapon? And, really, what does it mean to be woke?”
Her questions were straightforward, but the truth behind them pulled me into a moment of reflection. So I did some research.
A daily act of love
The term “woke” began as a call to be awake to the often unseen and uncomfortable realities many face. It emerged from African American communities in the early 1930s as an urgent reminder to stay alert against racial injustice.
At its heart, being woke is about recognizing suffering and responding with compassion and action. It’s about acknowledging those who are often marginalized and ignored. Jill knows what it means to suffer invisibility.
Since being diagnosed with Huntington’s disease (HD) in 2018, she has lived in a world that wasn’t designed for her or others with disabilities. Compassion is often in short supply. Accommodations that need to be made are often ignored, and genuine understanding can feel painfully rare.
Jill has told me she thinks people often see her disability before they see her. Her wish is simple but profound: for more people to be aware, to open their eyes and hearts to differences, and to treat every individual with dignity.
Sadly, many people still face stigma and indifference. These are barriers that are often invisible yet still deeply harmful. It’s too common for people with disabilities to be talked over or misunderstood, and for their tools and accommodations to be maligned or neglected. Ignorance and indifference can wound more than words do.
For our family, how we choose to be woke is about more than just awareness; it means showing up. Listening deeply. Celebrating small joys, like when Jill actually chuckles at one of my awful puns, which is a rare but treasured victory.
What does being truly woke look like to us? It means seeing the whole person beyond their rare disease diagnosis and finding grace in the moment, even when the future feels uncertain. It is a daily act of love and courage.
One of the reasons I share Jill’s HD journey in this space is to build awareness of what an imperfect world looks like. We hope that what she shares with others can slowly transform the way society understands disability.
Instead of viewing it as a problem to fix or a burden to bear alone, we want others to know that the imperfections caused by HD — a diminishing of her mind and body — are part of the human experience.
It’s diversity that enriches rather than diminishes, because her journey is a reminder that we need to care for others who are suffering. Can you name one person who isn’t suffering from something in today’s world?
This mindset challenges everyone to rethink public spaces, workplaces, and the language we use. It entails making inclusion a standard, not an afterthought.
That said, the path isn’t always smooth, as empathy seems to be in low supply these days.
It’s important to note that Jill is not looking for others to feel sorry for her, which is easy to do when people realize she has a terminal illness. Some might mistake that as empathy. But what she is hoping for is the understanding that her humanity shines in spite of her diagnosis. That kind of recognition brings comfort and hope to Jill and all of us who deeply love her.
I may never change the world with my puns, but perhaps choosing to be truly awake — that is, choosing kindness and awareness — just might.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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