Pandemic Musings Amid COVID-19 -- There's much to be thankful for on this Memorial Day weekend

I woke up Sunday morning sleeping on my left side, facing the window, and looking at a bright sunny day. My personal care assistant would be here in about an hour to help me up out of bed and get ready for the day.

Bodysurfcrewpr
Body surfing can be fun, but also dangerous.
As I stared out the window and listened to the birds chirping, I thought about being paralyzed for the past 40 years, since breaking my neck in a surfing accident on Condado Beach in Puerto Rico. I was 25 years old at the time of my accident and employed by the IBM Corporation.


I was also an assistant swimming coach at the City College of New York, and working for my childhood coach and mentor Marcelino Rodriguez, whom I met at the St. Mary's Park Recreation Center in the Bronx, New York. At that time, I was 11 years-old, and wanted to learn how to swim. Actually, my brother Victor and I were encouraged to learn how to swim by our grandfather, after our Dad died at the young age of 28.

For 40 years I have alternated sleeping on my side, on the left one night and on the right side the next night, just to prevent skin breakdowns and bedsores -- this routine can make you dizzy, but it's necessary!

Secondly, I really didn't think I'd live this long, due to the severity of spinal cord injury, in general. All in all, however, the rehabilitation doctors and physical therapists at the New York University Rusk Institute were spot on. Kudos to Dr. Howard Rusk, considered a founder of "rehabilitation medicine," and who, during the end of the second World War, helped our wounded veterans with spinal injuries similar to mine.

One high-light of my life, is that I actually met Dr. Rusk as I was learning how to use my newly assigned manual wheelchair at the Institute. I almost "rolled into him" in a hospital corridor, as he opened a door I was about to roll through. Frankly, I could not open the door with my paralyzed hands which permanently remained as "clenched fists."  I then introduced myself as he held the door for me, and told him I had just read his book, which was available to all patients at the Institute: A World to Care For: An Autobiography, by Howard A. Rusk, M.D.

My thanks also goes out to Dr. Kristjan Ragnarsson, who treated me for nearly four decades since my injury, and many others with spinal cord injuries.Without his care and that of his staff, I would not be where I am, or alive today.

I am also grateful that I got my education completed before my accident, which has enabled me to get and keep jobs throughout my working life -- at both the IBM Corporation and JPMorgan Chase and Company, which is now my current  employer.  I received my undergraduate degree at Colgate University in Hamilton, New York and then New York University for it's Public Administration Masters Degree Program -- all before my surfing accident.

Finally, but not least, I am grateful to my wife Maggie, whom I've shared a life and family with for more than three decades. She has blessed me with two children, a boy and a girl, and recently two grand-daughters. Now, we're waiting for our son to marry and grow the family even more! No pressure, my son, if you read this!

COVID-19 is affecting our elderly and people with disabilities disproportionately

The pandemic embracing the world today is one I never anticipated, especially in the 21st Century. I was more concerned about war, hatred, and frenetic political discourse -- but a virus? That caught me off guard, but it seems our world leaders were caught off guard as well.

Although everyone is affected by this pandemic, there are segments of the population more "health affected" than others. These include our elderly population, about 65 years and older, the disabled population, and those with immune deficiency disorders, which  are groups I am  familiar with.

No doubt, we're all affected in some way, shape or form. It is also apparent that our federal, state and local governments each have a point of view on how to cope with COVID-19 as well -- and not all are consistent.

For some people with disabilities, the virus is surely a threat or worse, for those of us with weak immune systems. Combine that with advanced age, and well, it can spell disaster.

Two not for profit organizations, Respectability and The Henry Viscardi Center, whose boards I'm privileged to serve on, both responded admirably to the crisis, both regionally and nationwide regarding people with disabilities.

The Respectability organization helped with the following:

"On Wednesday, May 22, the United States Department of Agriculture (USDA) announced that 90% of Supplemental Nutrition Assistance Program (SNAP) households now will be able to safely access food during the COVID-19 pandemic."

"In early April, RespectAbility Board Members Ollie Cantos, and Janet LaBreck held several virtual convenings for people with disabilities. During these gatherings, participants discussed the difficulties for people who are blind to socially distance while grocery shopping and conducting other essential business, necessitating the ability to shop online.

Grocery shopping was particularly challenging for SNAP recipients who couldn’t purchase groceries online. Nationwide, 11 million Americans with disabilities depend on SNAP to put food on their tables. When the pandemic hit, they were suddenly forced to choose between feeding their families or being exposed to a deadly virus.

The staff at RespectAbility quickly launched the #SNAPDeliverySavesLives campaign in late April. Since then, they have reached out to every state, actively encouraging SNAP directors, governors and the federal government to quickly enable people with disabilities to use their benefits online. They have tracked states’ progress as they applied for the USDA waivers. Their work was joined by the Consortium for Citizens with Disabilities (CCD) and numerous governors and senators.

Prior to the pandemic, just six states allowed SNAP users to order food online for delivery. The USDA announced Wednesday that “In less than six weeks, amidst an unprecedented situation, USDA has expanded SNAP online purchasing to 36 states and the District of Columbia – nearly three-quarters of the states, covering 90% of SNAP households.”
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There's more we can do for people with disabilities to help create a level workplace playing field for this talented and eager to work population. Let's not leave talented people with disabilities on the outside looking in.

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Comments

  1. Hi Jim,

    Long time reader, first time commenter. Thank you for the contributions the telling of your story is making. To see you living life - a loving life - is a sanctuary for my hope that I and some of my friends can find similar meaning. I remember reading that you moved jobs from IBM to JP Morgan - in my mind, and I think in the minds of other people with disabilities, that feels like an exceptional risk. At IBM, I would think there might (eventually) be less bias because more is known about about you - that despite your disability, you have a strong foundation of work, come to work on time, do not cost the company money, etc. JP Morgan recruiters know less about you, and a resume only communicates so much. Even when you were selected, I imagine there were doubts about whether you'd be able to integrate in the workforce, meet their expectations, having supporting coworkers, etc. What was that time like for you?

    On a related note, there is a lot written about how the need to employ people with disabilities and specific programs that can be created (eg EY's Neurodiversity Center), but there's less specialized guidance directed to the individual on how to succeed in traditional employment (or the employment search). My friends with autism, for example, are almost all unemployed despite top percentile IQs. I feel guilty that I am employed and they're not despite them being much smarter than me (I do think of my self as reasonably intelligent, despite assurances to the contrary by friends, family, clergy, and intelligent people). Do you have any advice?

    Mikhail

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    Replies
    1. Mikhail, thank you for your comment. Regarding your question regarding IBM, I retired after a 38-year career. So, I didn't plan to work again, JPMC recruited me -- they hired me. I understand that the firm had at least 100 applicants for this position, so the process was very competitive.

      In my view, the era of fear and uncertainty in my mind should be over. If you are qualified to work for a position, go for it. Some thoughts:

      1. Make sure you have the skills for a job.
      2. Ensure you can get to work on time,
      3. Ask the employer if they provide accommodations -- screen reader, captioning, wheelchair access etc. Under the US ADA that is a provision.
      4. I also believe that if you sense an employer is reluctant to hire you due to your disability, rather than the based on your qualifications or content of your character, look for another employer.

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