Sunday, November 5, 2017

From the Huffington Post: Busting Myths About Hiring People with Disabilities

By Mary Bailey Autism Advocate; Speaker; Co-founder Chase Yur Dreams Foundation; and Chase 'N Yur Face Media

As the subject of disability inclusion in the workforce becomes more prevalent, I wanted to take a closer look at some of the myths surrounding the hiring of people with disabilities, and to seek the insights of someone on the front lines of this movement.  As the Head of Disability Inclusion at JPMorgan Chase & Co., and a C5-C6 quadriplegic, Jim Sinocchi’s knowledge and experience with this topic is unparalleled. Sinocchi thinks and speaks in terms that challenge and change how people with disabilities see and present themselves in the workforce; as well as how employers and colleagues perceive, interact with, and assimilate people with disabilities into their corporate cultures. Through an emphasis on professionalism, partnership, equalizing the playing field, enhancing performance, and opportunities for promotions, Sinocchi dispels the myths about hiring people with disabilities; and provides guidance for ensuring success for employee, employer, and colleagues alike:

1. Cost to accommodate is too exorbitant.  

If we’re thinking about the cost of accommodations when hiring top talent in the form of a person with a disability, we’re focusing on the wrong thing. Enlightened companies think, “What do I have to do to hire this exceptional person?”  

According to national and international research on this topic, most accommodations cost less than $500. Granted, facility or real estate accommodations, such as widening doors, adjusting elevator buttons, adding braille inscriptions, installing ramps, and restroom modifications, exceed that benchmark. However, we’re now seeing newly constructed or remodeled buildings incorporate universal design standards, which ensure the greatest accessibility and accommodations for a building’s population - including lighting and noise considerations for individuals on the autism spectrum.  

2.  More apt to require and exceed sick days.  

Studies provided by  the National Business & Disability Council at the Viscardi Center, have reported people with disabilities had fewer scheduled absences than those without disabilities, and fewer days of unscheduled absences.  

One explanation for this is that employees with disabilities have established routines, and focus on their health so as to keep their jobs, and not give an employer a reason to fire them.

If someone experiences a setback regarding their disability, they may need more time to recover. However, in my experience, people with disabilities in the workforce know how to manage their disability, and likely need the same amount of days as an able-bodied person requires.  

Each situation should be considered individually. If a company has a reliable employee who needs more time off, an enlightened company gives the person a reasonable amount of time off as medically necessary, or as a reasonable accommodation. This sends the message to other employees that says “we care about our employees and will provide the appropriate amount of time needed to get better.”  

3. Too difficult / controversial for employers to take disciplinary action.  

If a manager will not coach, mentor, or take disciplinary action regarding a disabled employee who merited such an action, that manager shouldn’t be a manager. As an employee, I want to be treated as other employees are treated – if I do something wrong or don’t meet my goals, tell me and evaluate me accordingly. If I do well, and exceed expectations and goals, reward me.  

Disabled employees should be treated the same as able-bodied employees – with respect and dignity; as well as given opportunities for advancement and coaching when required. Treating employees with disabilities with “kid gloves” creates a standard that’s not good for the general population of employees, or the person with a disability.

4. Employers are more likely to be sued.  

We live in a litigious society, and people in general have become more apt to sue if they believe they have been wronged. According to the EEOC, the percentage of disability charges has steadily increased from 22% in 2008 to 30.7% in 2016.

However, suing an employer is not the first thing people with disabilities think about when they have grievances. While most disabled employees understand their rights under the law, they would rather work in an organization that is fair and equitable; and they want to be loyal and productive at work. It’s difficult in today’s marketplace to find a job as a disabled candidate - this means that we’re not quick to leave an organization, which took a chance with us. Most of us are grateful to work for a company that recognizes our talent and the contributions we make.

5.   People with disabilities make those around them uncomfortable.  

People naturally feel uncomfortable with people they don’t know. And when you add a disability, that can be more challenging – for both parties. That’s one reason why employers should implement an efficient accommodations process to equip people with disabilities to work independently.  

People with disabilities also have to do a better job making able-bodied people comfortable when meeting us. We must “own our disability,” do a better job of allowing others to engage with us socially, and share our stories in the workplace.  

There were times in my career when I failed to get a person to accept me. Yet, it was my responsibility to find a way to build professional working relationships with even those who had a visceral reaction to me. But there have been dozens of other people I’ve worked with, befriended, and developed relationships with over the years.  

The most important points are to be respectful, approachable, qualified for the job, presentable, and business-oriented.  

6.  Unable to meet performance standards.  

If an individual can’t meet performance standards, that’s a problem regardless of whether or not they have a disability. That’s why accommodations are so important. Everyone should be qualified to do the job they’re hired to do. And if that means an individual needs a specific, reasonable accommodation to do their best, then it should be provided.  

An employee who’s falling behind in their work, needs to take the time to meet with their manager and find out exactly what they need to do to improve, just as any other employee would. Address problems as quickly as possible, and get the help needed to improve. These strategies have nothing to do with a disability, but everything to do with being professional.  


7.  More likely to have an accident at work.  

Again, the data says this is not true. Safety comes first, across the board. People with disabilities usually know their weaknesses, and avoid exposure to danger and accidents. A manager should also assess the circumstances impacting their employee’s particular disability by:  

·        Asking the person with the disability what they think they need to become successful, and consulting with HR personnel to assess the employee’s circumstances and any concerns in performing a job.

·        Taking a fresh look at the work environment to make sure it’s free of obstacles or other workplace concerns. This may include checking with fire, safety, and facilities teams.

·        Implementing necessary changes after the assessment.  

8.  Investment of time for training is too much.  

In some cases, the time to train or make an environment accessible can be longer than that for an able-bodied employee. But the important question is whether the disabled person is qualified to do the work, and competitive in terms of what the job requires. The person with a disability might be better qualified than the able-bodied person, but requires extra, “reasonable” time to train. That should be acceptable, with or without an accommodation, and will  allow a manager to build a strong relationship with the employee,  sending the right message throughout the business.

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Original Huffington Post article can be reached here.

Sunday, September 10, 2017

11 year-old boy comes to terms with disability 50 years later

Disability comes in many different flavors. As an 11 year-old child it was a mental disability due to a tragedy in my family.  As an adult, it was a physical disability due to a surfing accident. Let me explain.

It has been 51 years since my father was shot and killed in New York City, in the borough of Manhattan. He was killed in October 1966 at the age of 28.

At the time, I was living in a South Bronx project development called the "Moore Houses," adjacent to St. Mary's Park. We lived on the 19th floor, apartment 19L, at 525 Jackson Avenue. We had a great view of the East River and could see LaGuardia Airport from our bedroom windows.

My sisters, Lisa and Debbie, were ages four and two respectively, and shared a room at the rear of the apartment. My younger brother Victor and I shared a room, as well as memories we would never forget.

Although we were on the 19th floor, we could hear the sounds and chatter on the street. The sounds of music, people talking and singing, sometimes fighting and on rare occasions, gunshots. We also heard the sirens of fire engines, police cars and ambulances throughout the night. Each had a distinct sound. Yes, the South Bronx was part of New York City, full of adventure and danger.

As Vic and I hopped into our twin beds one ominous night, oblivious to all the noises on the street, I remember having a dream, a confusing dream, that turned into a nightmare.

I was dreaming that my Dad was driving a white van and a mattress somehow appeared on the front driver's seat and the vehicle flipped over. As with other dreams or nightmares, which can be frightening, my heart was pounding and I was tossing and turning in bed.

As I struggled to wake up, I heard a loud noise coming from the front of our three-bedroom, lower income apartment. Someone was banging on the front metal door of our apartment, and, a second or two later I heard my mother scream, and then cry.

She wailed, "Oh my God, I can't believe it, he was with her, he was with her."
Not more than a few seconds later my
My Mom, Alma, in happier days.
brother and I were sitting up in our beds. My sisters were awake as well.

My grandfather, Poppy, and my Uncle Mike, walked into our bedroom and said, "Jimmy, we have to tell you something."  And before they could speak, I blurted out, "I know, Daddy's dead, he was killed in a car accident."

My Uncle said,"How do you know that Jimmy?" I replied: "I just had a dream that he died in a car accident."

"No no," my Uncle said, "he was shot and killed tonight, in Manhattan. At that point, we all started to cry. I don't remember much after that.

Today, as I sit in my wheelchair inside my rented Midtown apartment on the 31st floor in Manhattan, I still have much in common with that 11-year-old boy in the South Bronx. In 1981, I "broke my neck"  and became quadriplegic, due to a surfing accident in Puerto Rico, which resulted in paralysis from the chest down to my legs.

As I did as a boy, 51 years ago, I can see the East River from my apartment window today in Manhattan. As I think about my father's murder, I now know that I was paralyzed with fear and the uncertain life that loomed before me. I saw no future. My father, protector and role model, was dead.

After my Dad was killed, I didn't know who was going to protect us. Who was going to feed us? How would we pay the rent? Who would shield us from the "bad people" on the streets? At the age of 11, I took it upon myself to "figure out" how to protect my mother, my brother and two younger sisters.
Mom, Dad,Victor (in red) and me.
Try as I may, I was inadequate. I did what I could, with the limited knowledge of an 11 year-old. As the eldest brother of our brood, I did my best to hold us together. I went with my Mom to cash the Social Security checks each third day of the month. This check, my father's death benefit, was all the income we had. We barely had enough money for my Dad's funeral.

In 1966 I budgeted $30.00 for food shopping each week -- for the five of us. I made sure the rent was paid and "paid down" the credit chit we had at the local "bodega" (grocery store). I also nagged my brother and sisters to get home early and off the streets.

After Dad's death:Vic, Deb, Mom.Lisa, and me.
We avoided street gangs. Each neighborhood had a gang -- The Latin Souls, Savage Skulls, Black Spades and Golden  Guinea's still come to mind. The South Bronx was dangerous.

I was too young to make decisions, but I had to. My mother had a drinking problem, she was an alcoholic and fell apart when my father was killed. It was hard for my Mom, I'm sure, as he died in the apartment of another woman -- shot by the woman's estranged husband. Looking back now, this was a classic life tragedy -- which also plays out today in our society. I didn't know that in 1966.

As I look out my 31st floor window, that 11-year-old boy remains close to my heart.  

I went to college at 16, and then went on to graduate school at New York University. While in college, however, I had to transfer back to New York City, with permission from my upstate college, Colgate University, to finish my senior year. 

Why? My mother was assaulted in an elevator in our housing project, and I thought it was best to be with my Mom and siblings at that point. I received my degree from Colgate as planned. Lisa and Victor also attended and graduated from Colgate University. Debbie is a graduate of Syracuse University.
 
After a year with the New York City's Mayor's Office, as an intern with the Urban Fellowship Program, under former Mayor Abraham Beam, I worked at IBM for the majority of my career and dealt with my disability as best I could. Last year, I joined JPMorgan Chase & Co. as the Head of Disability Inclusion.

I eventually married and helped raise a family as a paralyzed adult. Together, my wife Maggie and I, also provided for our family as best we could. We have a daughter, son, and two gorgeous granddaughters.

As an 11 year-old boy, I could not envision a future of success -- I couldn't see it -- I was angry and frightened. In my mind's eye, I hope that boy could now smile and know that we did as well as we could -- given the "hand" we were dealt.

My Mom died two years ago.  May God rest her soul.

As an adult, I see the glass half full

My challenge now, however, is predominantly physical, rather than mental. My life experiences have taught me how to cope with my paralysis.

I've learned to cope, and I know how to tackle fears that still plague me and everyone else with a visible or hidden disability.

As I write this blog, the singer, Whitney Houston, is singing "Didn't We Almost Have It All" on my Bose radio. As I listen to her lyrics, I ponder America. I think about the discord we face as a society today. The protests, the fighting, the unrest, the mistrust, anger and fear.

This is all disturbing to me, given what that "boy" in the South Bronx had to overcome, and what that soon to be 62-year-old adult (your humble blogger) did to try and make a better life for himself and his family.

My hope is that this country will get over our differences and get on with building a better life for ourselves and the people we love.

That 11-year-old boy in the South Bronx, as well as boys and girls around the world, facing fear and uncertainty today, should also have the opportunities to build a better life, just as that boy began to do 51 years ago.

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Saturday, August 26, 2017

Local agency helps disabled people join the workforce

Déjà Vu: This column was originally published in the
Journal-News, a newspaper distributed in Rockland County, New York, January 6, 1992.

Jim Sinocchi

I'm re-publishing this column as part of my online blog. I still believe the message is appropriate today and is an example of the activities many of us with disabilities can enjoy in the United States, and perhaps around the world. Photos may be added to this posting from my collection or the web. Some of the organization names may have changed or no longer exist in New York State as of this writing. I hope you find this column helpful and informative.


If you are disabled and trying to get into or stay in the workplace, the local VESID ( Vocational and Educational Services for Individuals with Disabilities), may be able to help you.

Unlike several state or federal agencies I've dealt with, the experiences I've had with VESID and its predecessor organization, the Office of Vocational Rehabilitation, were positive.

VESID's basic mission is to help disabled people find jobs or keep the jobs they already have. Services range from medical treatment to improving your ability to work, to providing meal allowances, books, tools and transportation during job-training.

Some services, like college sponsorships, for example, are based on financial need. Other services, such as counseling, job placement and vocational testing are free.

I first used the services offered by VESID nearly 10 years ago, as a patient with a recent spinal cord injury at New York University's Rusk Institute, in Manhattan. At the time, VESID was called OVR (Office of Vocational Rehabilitation).

Even in 1982, the counselor's mission was to help me, as much as possible, get back to work so I could be productive and financially independent.

Although I wasn't always confident, this mission made sense because it kept me focused on my goal of getting back to work. And, it made sense for the state because once I got back to work, I would become a taxpayer and contributor to society, not a burden. The counselor also made recommendations that would enable me to better cope with my spinal cord injury once I got home. Remember, I was never physically disabled before my injury, so any help I could get to prepare me for my "new" life was welcome.

The recommendations included making arrangements for transportation to get to work, hiring nursing care and modifying my home to suit my disability – – ramps instead of steps, modifying bathrooms to accommodate wheelchairs and identifying and removing other architectural barriers.

But we're not talking just about advice. What really helped me was the financial and technical assistance I received to equip my van so that I could drive myself to work without having to depend on others.

There's a great deal to consider when you attempt to get severely disabled people on the road again, including passing a new road test and selecting the right equipment for a vehicle. Prices range from $250 for a basic automobile hand control, to $100,000 for a high-technology equipped  van.

As a result of a car accident I had recently while driving my van, I was pleasantly surprised to learn that I could receive assistance from VESID once again. In most situations, you can reapply for services and receive additional assistance.

This time, VESID provided temporary transportation for me to get to work while I sought to repair or replace my old vehicle.

What is important to note is that by getting me to work, VESID prevented the possibility of my being fired from my job due to the lack of transportation.

To qualify for VESID services you must have a physical, mental, emotional or learning disability that interferes with your ability to work. There must also be a reasonable chance that you will become gainfully employed if you receive rehabilitation services.

There are also a number of procedures to help ensure that the rights of handicapped individuals are being met, which include administrative reviews and fair hearings, and the Client Assistance Program (CAP).

CAP provides "legal, administrative and other remedies" to protect the rights of disabled individuals. In effect, these all amount to safeguards for individuals looking for help and ensuring that people are not denied services illegally.

A supervisor at VESID said, "Most people with disabilities can engage in some kind of work, so long as their health is stable, their goals are realistic and they persist in the face of inevitable challenges and hardships."

If you are disabled, and want to work, I think a call to VESID is a good place to start. Don't you?

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Monday, August 21, 2017

From The Huffington Post: At JPMorgan Chase & Co. Diversity and Inclusion is Helping People Build Careers and Independence

 For Jim Sinocchi, Head of Disability Inclusion, Business is Personal

By Mary Bailey Autism Advocate; Speaker; Co-founder Chase Yur Dreams Foundation; and Chase 'N Yur Face Media

In matters of disability, diversity, and inclusion there’s no one better qualified to address and conquer obstacles than Jim Sinocchi. He’s the ambitious and accomplished Head of Disability Inclusion at JPMorgan Chase & Co., who’s also a C5-C6 quadriplegic.

And his solution-oriented, no-beating-around-the-bush or pulling-any-punches approach makes him the perfect champion for working people with disabilities.

“There are qualified people with disabilities working right now –contributing to the bottom line,” declares Sinocchi. “People with disabilities are in the workforce with the right qualifications and competing for the same jobs that able-bodied people are doing. We shouldn’t be just a diversity metric. We have the skills to build professional careers and want to be part of a thriving business.”

When it comes to leveling the competitive field, maximizing performance, and supporting success, Sinocchi says, “People with disabilities don’t want to be a burden. If we can make the environment accessible, it’ll allow us to work as independently as we can, dispelling a myth that employees with disabilities always need assistance. This is no longer the era of ramps, wheelchairs, and minimum-wage jobs. This is the era of full assimilation into the corporate culture. It’s about proactive leadership, building careers, earning a living and partnering with leadership and colleagues as they manage their personal career trajectory.”

“The firm has been focused on disability inclusion since 1924” shares Sinocchi. “The last century in Corporate America was about giving work to qualified, diverse people, but people with disabilities were historically underrepresented and left out of the conversation.”

This, he says, is in part because what worked for hiring and assimilating other groups (black, Hispanic, women, LGBT etc.), doesn’t work for the disabilities group. Sinocchi isn’t afraid to voice the hard issues, saying, “Why are we afraid of this group of people? Why are people with disabilities traditionally looked at with discomfort? It’s human nature to have a visceral reaction to differences. But when you call a person in for a job, you call them because of their resume of abilities. Why then do we get nervous when we see that they have a disability? It doesn’t change their already-acquired skills and abilities.”

 As a roadmap to help people create a dynamic, inclusive environment, Sinocchi advises them to examine the “4 A’s”: Attitude, Accommodations, Accessibility, and Assimilation. “These are not technical or invented. They’re already in our vocabulary and represent exactly what we know them to mean. How do you feel about people who are different than you? How do you engage them? How do you get employees the accommodations they need to perform their job? You can’t have people with disabilities going around asking for help from others to do their job because the environment isn’t accessible. Do employees have the opportunity to assimilate into the company? Do they believe they have a shot at advancing their career from the mailroom to the boardroom?”

To open the doors of communication further and demystify disabilities, Sinocchi and JPMorgan Chase started “Disability Dialogues” – video interviews of executives asking people with disabilities questions about their life. “Questions everyone wants to ask, but were afraid to because they didn’t want to offend anyone,” says Sinocchi. “The videos are shown across company, all over the world. We’re getting real with this population, changing perspectives. It’s a different dialogue.”

The firm has implemented other significant mechanisms to make inclusion more seamless, including an Accommodations Fund, which is a program that enhances the reasonable accommodations process already in place to help requests get completed as quickly as possible. This frees managers from worrying about the cost of accommodating an employee, and empowers them to hire people with disabilities.

The company also maximizes technology to provide accessibility worldwide. “I’ve been able to experience firsthand, how JPMorgan Chase supports inclusion through actions, not just words. It’s in their DNA and they just keep advancing the culture. Right now, major initiatives (in addition to Disability Inclusion) include the military and veterans hiring effort, Advancing Black Leaders, and one of the best LGBT equality initiatives around. This is important because if we’re inclusive inside, we’ll be inclusive outside with our customers.”

“I tear-up a lot in this job because I get to see great moments of humanity in my role. I met a woman a while ago, who’s legally blind. She acquired the blindness while working on the job, diagnosed with an eye disease that took away most of her vision. She was on track to become a Vice President, but she didn’t feel she could get there because of her diagnosis.

JPMorgan Chase worked with her to get the accommodations she needed to keep doing her job, moving her to a new position where she could be successful, and she did. She’s intelligent, efficient, and terrific at her job. Last January, she sent me an email saying she just got promoted to VP! This is what JPMorgan Chase is about.”

Sinocchi had this to say about starting a career at JPMorgan Chase. “We don’t have jobs for people with disabilities; we have jobs for people who are qualified to work here, including people with disabilities. If you want to work at JPMorgan Chase, own your disability, and demonstrate that you’re qualified. We’re hiring for what you can do for our company and our customers. It’s not charity. When we hire a person with a disability, we want them to succeed and advance. ”

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Original Huffington Post Article with photos can be reached
here.


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Sunday, August 20, 2017

A disability tests the depth of one's inner strength

Déjà Vu: This column was originally published in the
Journal-News, a newspaper distributed in Rockland County, New York, December 9, 1991.
Jim Sinocchi

I'm re-publishing this column as part of my online blog. I still believe the message is appropriate today and is an example of the activities many of us with disabilities can enjoy in the United States, and perhaps around the world. Photos may be added to this posting from my collection or the web. Some of the organization names may have changed or no longer exist in New York State as of this writing. I hope you find this column helpful and informative.

"If I became disabled, I could never handle it," is a comment I hear sometimes from people considering my disability.

Coping with a disability is not easy. But there are many strengths, qualities and experiences that help people handle the hardships a disability brings on.

One quality I've admired in some friends who are disabled is their ability to forget they are disabled.

I'm specifically thinking of three friends: two are attorneys and one is an insurance agent. There are times when it seems like they don't think about the disability. Because they are able to focus on their jobs, they effectively put their disabilities out of their minds for a while.

Forgetting I'm disabled helps me reduce some of the stress and frustration my disability brings to my daily activities. I work on removing obstacles that remind me of my disability. I establish routines, plan my day and don't take on unnecessary risks.

For me, growing up in the infamous Fort Apache section of the South Bronx has also helped me cope with my disability. In my old Bronx neighborhood, I knew there were things worse than being poor and without a father. I could have been a drug addict, homeless or afflicted with AIDS. And, I know these conditions are still possible, so I now feel blessed, despite my disability.

Other childhood experiences also help me now. I learned which neighborhoods to avoid, because I wasn't the right color or race. I learned to flee, instead of fight street gang members who belonged to groups like the Savage Skulls, Bachelors Seven and the Black Spades.

One incident I clearly remember is a walk through St. Mary's Park, in the Bronx,with my best friend Ruben. Two men stopped us and asked for money. When we said we didn't have any money, they pulled out knives and robbed us of our leather coats.

I then learned the sense of helplessness that comes from being mugged at knife point, knowing that our coats would never be recovered.

Because of people like Mr. Garin, my sixth grade teacher at P.S. 27, I learned to cope with the death of my father at age 11. Mr. Rodriguez, my swimming coach at the St. Mary's Park Recreation Center, taught me to do my best, despite being poor. And Mr. Stern, my physical education teacher at Evander Childs High School, gave me the confidence I needed to apply for, and then succeed in college.

In many ways, growing up in the South Bronx prepared me for a physical disability. I now avoid buildings with steps. I don't attend social events being held at locations that can't accommodate my wheelchair. And, I now avoid people who discriminate or who just don't like being around disabled people.

Today, I have feelings of helplessness when I can't use the copier at work, can't pick up and hold my son or daughter at home, or do" fix it" things things around the house.

And, I still strive to do my best, even though I'm paralyzed from my chest to my feet, and cannot use my hands. I have great admiration for people who cope with head injuries, deafness, birth defects, blindness and others who face severe disabilities.

I feel the same way about able-bodied people in tough financial situations or people experiencing other personal hardships. I've learned that you can't always predict from what source your strength will appear when you are faced with adversity or disability.

And, you don't really know how you'll behave in another person's condition or situation -- unless you walk where he has walked, or, until you have worn her shoes.


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Wednesday, August 9, 2017

The passage of time yields progress for everyone

  Déjà Vu: This column was originally published in the Journal-News, a newspaper distributed in Rockland County, New York, February 17, 1992.

I'm re-publishing this column as part of my online blog. I still believe the message is appropriate today and is an example of the activities many of us with disabilities can enjoy in the United States, and perhaps around the world. Photos may be added to this posting from my collection or the web. Some of the organization names may have changed or no longer exist in New York State as of this writing. I hope you find this column helpful and informative.


Change tends to creep up on you. Before you know what has occurred -- what was in is now out -- and what used to be out appears in at an antique shop in Nyack, New York.

For example, I turned on my stereo the other day at the request of my two-year-old son Jimmy, who wanted to dance.

As Jimmy "hopped" around the living room, I took an inventory of my stereo equipment: one receiver and one single cassette tape deck, both about 15 years old, and one
single-draw CD player, about five years old. Something was missing: no turntable.
Web:Illustration Only


As a kid in the South Bronx, there seemed to be a turntable or record player, as we called them, in every apartment. In fact, my last count of 45 r.p.m. records and vinyl albums was a little more than 500 – – and I grew up poor.

My, how things have changed, I thought. My son and daughter, Danielle, are growing up in a house without a turntable. Boy, did I feel old.

Old-fashioned cash registers also seemed to have gone the way of the record player. "Scanning" groceries at the supermarket checkout counter, a relatively new technology for consumers, is now commonplace.

When I joined IBM in 1976, scanners weren't as popular as they are now. Everything is scanned into the computerized cash register today, from groceries to clothes to auto parts.

Changes have also crept up on people with disabilities during the span of just 30 to 50 years. Before World War II, a person sustaining a spinal cord injury would almost surely die – usually because of complications with the kidneys and bladder.

In the 1940s and '50s, Dr. Howard Rusk and other medical pioneers discovered how to manage a person with a spinal cord injury, and now many more of us are kept alive today.

And back then, a severely disabled person driving herself to work was unheard of. Today, thousands of people drive cars and vans with hand controls, wheelchair lifts and other technological wonders.

Now, disabled people can participate in all kinds of sports: snow and water skiing, swimming, wheelchair races and wheelchair basketball. There are even travel agents catering to the needs of the disabled traveler.

Love and courtship have changed, too. There was a time when disabled people were kept in institutions, segregated from society. Now, able-bodied people date and marry disabled people, and they even raise families together. And sadly, they even divorce.

What about a law guaranteeing the rights of people with disabilities? Unheard of just 30 years ago. Now, there's a tough and aggressive Americans with Disabilities Act, with teeth to protect rights and to literally remove architectural barriers obstructing disabled people today.

Just look at how far we've come. I believe that change will come even faster as technology and medical expertise combine to cure all types of ailments, from spinal cord injury to blindness to birth defects.

The question I marvel at when I think about all of this is: "How far can we go?"

The song is over and Jimmy is asking me to find another radio station. "Sure, Jimmy," I said. "Who knows? In 10 years I may be 'hopping' with you."

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Saturday, August 5, 2017

Hospital Visits: Patients' Best Medicine

Déjà Vu: This column was originally published in the 
Journal-News, a newspaper distributed in Rockland County, New York, March 16,1992.
 

I'm re-publishing this column as part of my online blog. I still believe the message is appropriate today and is an example of the activities many of us with disabilities can enjoy in the United States, and perhaps around the world. Photos may be added to this posting from my collection or the web. Some of the organization names may have changed or no longer exist in New York State as of this writing. I hope you find this column helpful and informative.

Visiting relatives and friends in hospitals and nursing homes is difficult for many people. It's tough for me because I know what it's like living in an institution. But I also know how important visits can be to patients.

I spent almost eight months at New York University's Rusk Institute of Rehabilitation, and I've been in and out of hospitals over the last 10 years since my spinal cord injury.
Web photo: Rusk Institute of Rehabilitation

My grandmother is now in a nursing home. What strikes me every time I visit "Nana" are the reactions of the other patients. When my children, Danielle and Jimmy, walk into the facility, many of the elderly people perk up. There eyes seem to brighten at the sight of these young visitors. They approach the kids to touch them, talk with them or just say hello.

Since the 1960s, the number of residents in nursing homes in the United States has more than doubled. There are about 23,000 long-term care facilities in the United States, housing more than 1.3 million people – – 85% of them over 65 years old.

I think I know what some of the patient's are feeling. When I was a patient, I didn't really know if I would ever leave the facility. And, I thought people would forget about me. No matter what you're told as a patient, you still believe that you may die in a place that is foreign to you and with people you don't know. You're not at your "real" home, and you're always afraid.

Your moods change frequently. Sometimes you want to be left alone to weep or just cope with your situation in your own way. Other times you want to have people around you, to share feelings and to find comfort in people who care about you.

I found that the best medicine for people in hospitals or nursing homes is to have visitors regularly. First, visitors can pick up the patient's spirits, and second, it lets the staff know there are people who care about the patient and worry about the quality of care being given to a friend or loved one.

The patients I knew at Rusk all looked forward to visits from their friends, relatives or spouses. Yes, some would complain about the visits, but it gave them something to talk about other than their ailments or TV soap operas.

One patient, who had lost the ability to speak, could communicate very well with his wife. Although he could only grunt and groan, she alone new exactly what he needed and wanted. Try as they might, the nurses could never break the code. He was eventually transferred to a rehabilitation center in the South, where he could be closer to his wife and family.

When a patient has visitors, the nursing staff benefits. In many ways, it makes their jobs easier. Family members can help with the patient's care and emotional well-being. Patients don't feel forgotten or worthless, and are not as likely to become depressed.

In my case, when visitors were expected, the nursing staff would take extra care getting me ready to receive my guests.
The staff didn't want me to look ill or unhappy.

Unfortunately, patients who were expected to remain in the facility for long periods of time usually get the greatest percentage of visitors when first admitted. Then the number of visitors and the frequency of visits taper off. That's when the patient feels alone and forgotten and the patient's well-being starts to slide and the nursing care seems to decline.

Because of the increasing numbers of people living beyond the age of 65 and changes in lifestyles, which separate the elderly from being cared for by their families, more and more people will find their way into nursing homes.

A great many of those people never get well. But that doesn't mean they should be forgotten or hidden from the public. If you have a relative or a friend in an institution, take a trip and visit him or her this Sunday. The trip will do you both some good.

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Sunday, June 18, 2017

A Father's Day Gift: They call me "Papa"

Over the years I've been called many things, but after six decades on this planet I'm especially proud to be called "Dad" and "Papa."  Dad, because that's what my children, "D," my daughter, and  Jimmy, my son, call me; and "Papa" because that's what my grand kids call me.                               

I have been paralyzed for more than 35 years and never thought I'd live this long or experience life in full color, ranging from the darkest of storms to the richness of a rainbow. 


After a storm, if you look for it,  you'll find a rainbow of new perspectives
After a storm, if you look for it,
you'll find a rainbow of new perspectives.
I never thought I'd have children, let alone grandchildren. Both are a joy to have, but the experiences are different.

With our own children, my wife Maggie and I felt the sense of excitement and joy, but also the deep sense of responsibility.  We also had new responsibilities other than ourselves as there were two other members of
our household that we had to feed, clothe, nurture, educate  and guide. Most parents feel this as well.

When your children start their own families it's different because you're not the primary caregivers for your grandchildren as you were with your own kids -- but you still care. You're invested in your grandchildren's success. And, in my family there was one more factor: while living with a disability, children will eventually notice that you're different.


We're a Family Too


jim sinocchi in wheelchair, D his daughter, wife maggie, james his son
From left, my daughter "D,"Maggie,
Jimmy and Papa.
As my kids grew up, we did things other families did, sometimes even more than other families did, such as going to the beach at the Jersey shore,  dining at restaurants and fast food establishments, as well as attending school events as most people do. As our children got older, we took them to sporting events -- soccer, football and baseball games - - and we did our best to get them to the Broadway theater in New York City once each year.

These events and activities were part of our family values. In our  family, this way of life was "our normal" -- with me -"Dad"- in the wheelchair doing "normal" activities with my family. On many trips, I drove my "handicapped equipped van" to our destinations. When I couldn't drive, Maggie would drive the van. In my family, my disability was our "normal."

What I couldn't control was how other people perceived my family and me.  When Mag and I began dating, she noticed people staring at us wherever we went -- a disabled man with an ablebodied woman -- or I should say a beautiful ablebodied woman. This happened all the time.

wheelchair rider jim sinocchi, with son james standing next to him,
Jimmy is now in his mid-twenties and
serves our country in a civilian capacity.
When my daughter was about six, she noticed that folks were staring at us as well. She then asked, "Mommy, why is everyone staring at us at the Mall?"  Eventually we all became used to it and didn't even notice it anymore -- that is, until Jimmy noticed it when he turned eight.

One day when Jimmy got off his school bus, his Mother was waiting for him as she did every school day. He usually hopped off the bus with excitement ready to play with his friends after school. On this afternoon, however, he got off the bus slowly with his head down and walked pensively over to his mother.

"What's wrong?," said Maggie. Jimmy looked up at her, clearly upset, and said: "The kids on the bus kept telling me that Daddy is crippled.  Is Daddy crippled, Mom?"   That was a sobering night for all of us.

"Papa, why can't you open your hands?"

With the birth of my first grand daughter, I thought about how to engage with her the day she was born. I knew I couldn't hold her, hug or even take turns to feed her like her parents or my wife could.  My paralyzed arms and hands were just not what they used to be. So, I decided to leverage my voice and smile to engage her. I did the same with my second grand daughter when she was born. 

Over time, both grand children knew my voice and tone. I spoke to them with inflection and facial expressions consisting of smiles and moderating my voice. Today both girls understand my sense of humor and are comfortable with me.

Just a few short months ago the oldest grand daughter asked, at the dinner table, why I couldn't open my hands, as they are always clenched in a fist. I briefly explained that Papa had an accident and couldn't "open my hands."  She said, "Ok, Papa." She then got off her chair, walked over and hugged my leg while I sat in my power wheelchair.

Since that time, just a few short months ago, one grand child sits on my wheelchair footrests and the other now climbs on my lap for rides around their home. I also get hugs and kisses from both girls whether I ask or not. Hugs and kisses just make the world go 'round!

Male wheelchair rider with boy tossing a soccer ball
(Web photo) The world is a melting pot of families
that live and thrive with a family member with a disability.
I can't emphasize enough how "normal" this makes me feel, since I'm paralyzed from my chest to my toes.  Children may very well be our greatest example of  how to embrace those who are different, including people with disabilities. But more than that, children may very well represent how we should embrace each other as members of the human race  -- regardless of our differences.

                                                               
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Sunday, May 7, 2017

The Miracle of Wound Care: Grafix and the Stem Cell Cure (Part 2)


  Stem Cell Treatment Comes to Life

(Caution: This particular blog describes a wound on my hip, not an uncommon occurrence for folks paralyzed and without sensation on their bodies. Photos of the wound may be too graphic for some readers).

I knew the prospect of surgery was possible, as Dr. Gibbons asked that I have a consultation with Dr. Helm several months earlier during my traditional treatment for this wound. At the time, Dr. Helm basically told me that in some cases, skin is used from another part of the body, the buttocks for example, and used to close the wound in question.
Dr. Laurence Helm

The drawbacks are obvious, as you now have two wounds that have to heal. In my case, I'd be bed-ridden for the majority of the time because I'm paralyzed. And, it could take months for both wounds to heal, if they do heal. To me, it seemed risky, and debilitating. Frankly it scared me.

With that as background, in October of 2015 during a weekly
Dr. Gibbons
checkup, my wound was infected and decaying, accompanied by a strong odor. One look by Dr. Gibbons told me that something was horribly wrong. Without hesitation, he told my wife Maggie and I to go directly to

Brigham and Women’s Medical Center for immediate surgery and he would contact Dr. Helm and alert him to the emergency. The next day Dr. Helm performed surgery.

Wound, post surgery
Despite a successful a surgical procedure my wound was still not healing. The medical team was concerned, and I was worried. I knew several spinal cord injured patients who died from complications due to spinal cord injury and infections such as mine.

Although I had excellent care at South Shore Hospital, it didn’t matter that I had great doctors, or a significant number of medical hours devoted to me by nurses and staff, or the necessary hospitalization and surgery - - my Stage 4 wound would not heal.

"Stage IV wounds may feature extensive loss or damage to tissue, muscles and bones, and often feature muscle and bone that is exposed. The severity of a wound can often cause complications and disrupt the support of the joint or body area that it affects."
My wound was not caused by neglect by me or the result of a careless skin regiment. I sustained this wound more than 20 years ago when a doctor, during a medical procedure, injected an antibiotic into my hip. Instead of penetrating skin and perhaps muscle, the needle hit my hip. Over the last several decades I developed a bone spur, due to calcium "leaking from the bone."

At the time, Dr. Gibbons believed there was a high probability that my wound wouldn’t close by itself. Therefore, I was at risk for more infections, additional surgeries, hip disarticulation, amputation and in my mind, maybe death from infection. I was scared. Little did I know, a cure for my wound, called Grafix, was just down the hall from my treatment room at South Shore Hospital.

The stem cell miracle begins



While treating me, Dr. Gibbons, Medical Director of the South Shore Wound Center in Massachusetts, was also treating patients with a relatively new product called Grafix, a product that has already been proven to work in healing wounds for diabetic patients with ulcers as well as veterans with battlefield wounds sustained by members of our Armed Forces, affectionately known, in some circles, as “Wounded Warriors.”

Grafix is a cryo-preserved (preserved by cooling to a subzero temperature) human placental tissue currently being used by doctors to treat chronic wounds such as diabetic foot ulcers, venous leg ulcers, and pressure ulcers, as well as acute wounds such as surgical incisions, burns and trauma.

Grafix is basically formed into a “stem cell cover” that is applied to the surface of a wound, such as I had. Other forms of the same type of placental tissue have been used for 100 years and is becoming a standard treatment for chronic wounds.

Dr. Gibbons said my wound "had characteristics similar to those wounds previously treated and healed by Grafix." Grafix is not considered "standard treatment" for wounds like  mine, but it should be. Some medical plans cover the treatment in some states here in America, but others don't.

My medical plan, for example, didn't cover the treatment in Massachusetts. As a result of this inequity, the result is a lack of "healthcare disability inclusion," when it comes to individuals with spinal cord injury, or other ailments, for example.

"Stem cell treatments in a broad sense," says Dr. Gibbons, "are used in some regions of the United States and for some treatments. That's because approvals are made my regional or jurisdictional advisory entities.

"The oversight of these medical decisions are fragmented, and some times treatment success in one place is not shared or presented to others," Gibbons says. "This remains a problem in the United States and around the world."

Innovative Thinking is Essential to Wound Healing


Since World War II, some soldiers injured in the war, who sustained a spinal cord injury, were saved from death because of Dr. Howard Rusk, founder of the Rusk Institute in New York City, who developed new practices and procedures, which at that time, could also be considered investigative.

Dr. Rusk’s breakthrough procedures included catheterization and bowel and bladder management. Today, much of his work has been “accepted” and considered standard practice, and medically necessary today. If not for Dr. Rusk and his foresight, spinal cord injured people -- people with paralysis due to stroke and other issues in my view, would not be alive today.

I consider Dr. Rusk’s work, whom I met as a spinal cord  injury patient in 1982, a classic  example of innovative thinking at a time when these men and women had little chance to recover and were likely destined to die. Unfortunately, pessimistic and narrow-minded thinking still exists today; but that’s fodder for another blog.

Where Grafix Stands Today


“I believe Grafix is at the cusp of innovative and affordable treatment for wounds due to spinal cord injury as well as diabetic ulcers,” said Dr. Gibbons. “Grafix may very well be at the forefront of new treatment for chronic wounds that heal slowly or can't be healed at all, sometimes resulting in amputation or worse."

"Frankly," Dr. Gibbons said, "Grafix may be at the precipice of breakthrough solutions for orthopedic nuero-wound care in today's global medical environment.”

During medical treatment and recovery for my wound, costs incurred by my medical plan as well as my personal costs -- medical premiums, deductibles and out of pocket spending, surgery, hospitalization - - would have been significantly less if I had the opportunity to use the Grafix treatment at the outset of my diagnosis.

Dr. Gibbons, his medical team and associates throughout the United States, as well as the Grafix team, have already seen results indicating that stem cell treatment could be successful in cases such as mine.

Brave American soldiers coming home with shrapnel wounds have also benefited from this treatment in Osiris trials with the Grafix product.

Many spinal cord injury patients today live longer and experience different kinds of medical conditions as we age. My wound was one of those conditions, thus the explosion of medical equipment that includes beds, nursing home long-term-care, wheelchairs, walkers, devices and medicines used to help treat those who become inactive due to these injuries.

I remain very active and continue to serve on boards as well as consult with corporations on behalf of people with disabilities. Grafix and similar progressive treatments offer new hope and innovations to help individuals with disabilities continue to make contributions to society.

Grafix and other stem cell based products may just well be the breakthrough treatment for wound care due to paralysis. Without this treatment, in the darkest recesses of my mind, I shudder at the thought that without stem cell treatment I may not have written this blog, or had the chance to help current and future disabled individuals as the Head of Disability Inclusion at JP Morgan Chase & Company.

*Dr. Gibbons and I do not have a fiduciary or consultative relationship with Grafix or Osiris.

Wound on admission at South 
Shore Hospital, 
MA, 10/2015
Wound healed, July 25, 2016





                            

Dr.Gibbons and members of the South Shore Wound Care Hospital team celebrate my discharge after 10 months of treatment.

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