It’s been thirty-four years since I sustained a spinal cord injury—a moment that forever altered my life. I could tell you stories about who I was before, but what’s more important—and more urgent—is who I am now, and what it means to truly live with a high-level physical disability.
Let me be clear: living with a physical disability is not easy. Every single day presents a new challenge, both visible and invisible. And while it’s a feat that I’ve never been hospitalized in all these years, that doesn’t mean I’ve been without significant health concerns. In fact, the one that looms largest over my daily life—often stealing moments of peace and presence—is the threat of pressure injuries.
Imagine this: you transfer from your bed to your wheelchair and instead of thinking about your plans for the day, all you can focus on is your skin. Is there a sore starting? A bruise I can’t feel? A discoloration I can’t see? That’s the reality for many of us. For me, it means relying on my trained personal assistants to spot the early signs—because once a pressure injury develops, it can mean weeks to months of bedrest, sometimes in painful isolation. Physically uncomfortable. Emotionally taxing. Spiritually draining.
But even with the emotional weight and physical risks pressure injuries bring, I know this: it could be so much worse—and it has been for many of my peers. Some have died from untreated or poorly managed pressure injuries. Let me remind you, even Christopher Reeve, “Superman” himself, died from complications associated from a pressure wound. If someone with access to the best care imaginable could die from this, what does that mean for disabled individuals in our communities—particularly those with limited resources?
It means we need more than care. We need disability-competent coordinated care. And I’ve had the privilege of receiving exactly that—thanks to the Independence Care System (ICS).
ICS is not just another health home in New York. For over two decades, they’ve supported me in ways that many organizations talk about but rarely deliver. Their model isn’t about saving costs by cutting corners. It’s about investing in cost effective preventative care to prevent costly pressure injuries. And yes—it is cost-effective to prevent hospitalizations and keep people like me supported to live safely at home, in our communities.
What sets ICS apart is their real-time, person-centered, interdisciplinary team approach. When I detect a potential pressure injury, I don’t wait for a doctor’s appointment three weeks out. I call my ICS team—immediately. I share what I know: where I noticed a change in my skin, how long I’ve been sitting, any discomfort. I am quickly connected with a certified wound care nurse and a seating specialist, both working with me directly to understand the issue and begin treatment.
Sometimes the hardest part is hearing what I know might be coming: bed rest—again. Depending on the severity, that means staying off the wound for weeks, sometimes longer. But what makes the healing possible is knowing that I’m not doing it alone. ICS monitors my progress, collaborates with my rehab physician, and ensures I have the right supplies and medical equipment immediately—not after some bureaucratic delay.
This is what I mean when I talk about “real-time care.” Real-time care is not a luxury. It’s a necessity. It’s the difference between a manageable injury and a life-threatening one. It’s what keeps me out of hospitals and in my home, living with purpose.
And yes, that matters economically—hospitalizations are not only more expensive, but they’re also traumatic and often lead to more complications, including additional pressure injuries. Preventing hospitalization isn’t just smart policy—it’s cost-effective humanity in action.
So yes, after thirty-four years of living with a spinal cord injury and not a single hospitalization, I celebrate that milestone. I give thanks to God for the alignment I’ve had with compassionate personal assistants, loving family and friends, and yes—organizations like ICS who walk the walk when it comes to disability competent care.
I recently participated in a focus group of people living with physical disabilities across New York State. Here is the sad truth: ICS only serves the 5 boroughs of NYC, Westchester, and Orange Counties. People upstate have to work to cobble together a fraction of the care I have because I live downstate. All New Yorkers should have access to care like I do. NYS, even in these tough times, can make a choice to do better. They are already spending millions on the care of people with disabilities, they are just not spending it smartly.
The bottom line is this: disability competent care works. It keeps people alive. It helps us thrive. It allows us to dream beyond survival. And yet, too few healthcare systems understand or deliver it. They talk about equity, but equity means meeting people where they are—with the right care, at the right time, with the right understanding.
ICS doesn’t see us me or my friends as a problem—they see us as needing a care model that meets our needs. And that difference? That’s the reason I’m here today—thriving, not just surviving.
If we want to reimagine healthcare that truly includes everyone, we must center the voices and experiences of those most impacted. That starts with listening, but it must end with action.
Opinions expressed are solely those of the writer(s) and do not necessarily reflect the opinions of Able News at The Viscardi Center and/or The Viscardi Center.