LivAbility Magazine

Edition 20 | Spring 2020

Ability360 President and CEO Phil Pangrazio. He wears a blue button up shirt and a navy blue blazer overtop. He looks slightly to his right and has his hands folded on top of a black plexiglass table in front of him. Text reads "The fragility of our mortality has never felt more real."
Photo by Christian Guerithault

By Phil Pangrazio

By the time you read this, the world may be a far different place.

Or, hell, for that matter, it may all be back to normal.

But today, as we at Ability360 are reacting to the COVID-19/Coronavirus pandemic, I’d be remiss if I did not discuss how this impacts people with disabilities. Without question, this outbreak disproportionately affects people with disabilities more than the rest of the population. Our vulnerability is apparent and we may have access to fewer resources. We are all anxious. Blame and frustration are rampant but useless.

The bottom line is that people with disabilities are scared. Many of us have chronic health conditions or are just more susceptible to illness. The thought of catching highly-contagious flu with no known vaccines or effective antivirals is frightening. I’ve seen the concern on many of our consumers and employee’s faces. The look in their eyes is telling! I, too, am scared and share their concerns. It’s hard not to feel helpless with this silent killer spreading its wrath across the globe. The discussion about ventilators is horrifying, and I’ve seen way too many of my friends and colleagues with disabilities spend their last days of life on these machines.

The fragility of our mortality has never felt more real.

This brings me to the most critical issue at hand: how all of this will play in the medical community, the hospitals and doctor’s offices. Will doctors and hospitals engage in rationing of emergency and intensive medical care when making treatment decisions? Will they favor non-disabled or healthier people over persons with disabilities? Many are predicting they will. This will prove deadly for many of us. This prejudice must not be tolerated. Our lives are not misery.

We must ring the alarm loudly and voice our objection and abhorrence to this practice. Disability rights advocates nationwide must demand that all persons with disabilities have non-discriminatory access to life-saving medical care. We are not less valuable or less deserving than other people. Medical rationing is a violation of human rights, civil rights and the legal rights of people with disabilities, and we must not tolerate it!

Yes, my friends, these are indeed trying times!

Concerning preparedness, like most people, I’ve questioned or at least audited my back-up plan. Do I have enough medicine, both prescriptions and over-the-counter medications? What about my durable medical supplies? What about personal care assistance? Can I turn to my neighbors and friends? Whom am I going to call if I need some additional help? And what happens if those individuals have been affected and cannot assist? Do I have enough food in the house? And don’t get me started about the hoarding at the grocery stores. Goodness, gracious! How much toilet paper does a person need? Nothing seems rational during irrational moments like this. I am so thankful for my family, friends and neighbors who have reached out to me to see that I’m ok.

Maybe that will be the upside of all this chaos, the expression of a little more humanity.

Yes, my friends, these are indeed trying times!

And then there is the question of how Centers for Independent Living (CILs) like Ability360 can assist people with disabilities in our community. Like other community-based organizations, we’ve followed the trajectory of news and facts about the pandemic. We’ve made difficult decisions on a day-to-day and hour-by-hour basis as more direction came from our public health officials and local, state, and federal government.

At Ability360, we are taking actions and adjusting our programs and operations as best we can as information and facts guide our decisions. We know our choices won’t be perfect. Here’s what I do know: We will always try to do what is in the best interest–health and safety–of our employees and those we serve.

Ability360 began by canceling or postponing organizational events and group activities both internally and with our partner agencies. We stopped all direct face-to-face consumer contacts and home visits. Our front line IL staff have begun teleworking, and some programming has morphed into virtual classes. Their ongoing consumer outreach has been received positively and welcomed as anxiety has ratcheted up. We closed the Sports & Fitness Center and Café Cultivate. The Home Care Services program continues to operate to ensure that our consumer’s needs are being met at home. This has not been easy, and we’re all still adjusting to the uncertainty that lies ahead.

Yes, my friends, these are trying times, indeed!

Too often, today’s questions don’t have many right answers. What should our government be doing on a national level? On a local level? What should organizations such as ours be doing? What should other community organizations be doing to assist? And ultimately, what can individuals and families do to ensure that we all get through this alive?

As a quadriplegic, “paralysis” is something that affects me on a neurological level, but in many ways, it is what people worldwide, disabled or not, are dealing with on a scale never-before-encountered. We are all feeling like our movement is restricted. And in fact, it is. Social distancing is the new vernacular. Staying home and isolating is the momentary panacea. One fateful encounter could mean severe illness or worse. One sneeze, one cough, makes us want to go running for the door.

I’m surrounded by many people I consider to be intelligent and perfectly capable of planning. But yet when it comes to something like this, it’s incredibly challenging to develop a plan that does not have as many, if not more, unintended negative consequences. Yesterday we were pondering our options. Today, I feel like we have taken the necessary actions based on the limited options available.

By the time you read this, I’m confident you will see that Ability360 is stepping up and delivering on our commitment to advocacy and serving the community.

Yes, my friends, these are trying times, indeed! And if you’re reading this, I hope you and your loved ones are staying safe, healthy and happy.

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Phil Pangrazio

Phil Pangrazio
President & CEO, Ability360

Read more by Phil Pangrazio.