From Norman’s Desk — September 2020

A white male with glasses looking up at camera smiling wearing a green shirt and cap with CERT written on bothThis month marks nineteen years since the attacks of September 11th.  National Preparedness Month is also recognized each September to promote family and community disaster and emergency planning now and throughout the year.

The 2020 theme is: Disasters Don’t Wait. Make Your Plan Today.

For many, the memory of that awful September day in 2001 is fading, but my memories are still vivid down to my shirt and tie.  The day started out so bright, beautiful, and refreshing, but it ended so dark and frightening.  The feeling of anger and uncertainty spread around us like a cloaking fog.

That feeling is around us again as COVID-19 has changed our lives, and the future is uncertain as we all work through this “new normal.”

Every year since the attacks, I choose to pay tribute to the three elements that create my memory of that day.  First, I honor the life of my friend and colleague Colleen Fraser who died on Flight 93 with those other selfless heroes who may have saved the U.S. Capitol or the White House and thousands of other lives.  Colleen was a fighter, and she was in good company that morning fighting to take back that plane.

Second, I remember the lives of the 343 FDNY firefighters who died that day.  Most knew going into those buildings that some of them would not come out alive.  They knew this instinctively by virtue of their experience and profession.  They still went in with police officers and EMS personnel to save those who could not save themselves.  They went in to save people with disabilities.

And, yes, thirdly, I remember those people with disabilities who died that day in those towers.  I was not watching the horror on television that morning.  I had a meeting at 10:00, and during that meeting I spoke of Colleen and wanting to connect her with someone.  Later, someone told me of the collapse.  My very first thought was that many firefighters had just died; my immediate second thought was that many people with disabilities had died as well.

This year I also pay tribute to the doctors, nurses, medical support staff, direct care staff, and first responders who put their lives on the line trying to save others from COVID-19.  They also ran toward danger to help others, and many paid with their health or their lives.

How many people with disabilities died that morning in September may never be known.  We do know that the corporations and government agencies housed in those towers hired people with disabilities.  We do know that some people with disabilities made it out because they had a plan, their company had a plan, or some colleague or friend took the initiative to get them out.   We do know that others stayed behind not wanting to burden friends, not wanting to get in the way, or just having unwavering faith that the FDNY would get to them.  We also know that loyal friends stayed behind with them.  We know that some people with disabilities who stayed were rescued but many died with their rescuers.

In the same manner how many people with disabilities have died from COVID-19 may never be accurately known. We do know that nearly 40% of the COVID-19 deaths occurred in nursing homes where many people with   disabilities are forced to live.  We do know that people with disabilities living in the community have been isolated by the lack of community-based direct support workers.  We do know that the government is not tracking the deaths of people with disabilities as a COVID-19 statistic.

Every victim of these national tragedies needs to be remembered and honored.  I feel a personal duty to honor Colleen, The 343, and those almost nameless people with disabilities who stayed behind that September day.  I also honor the nearly 200,000 persons who have died in this pandemic.

As I say each year, let us all remember the victims and the heroes of September 11, 2001, by getting prepared and staying prepared.  You never know how a bright, beautiful, and refreshing day may end. 

“My Two Cents” – September 2020

A smiling white male with greying hair wearing glasses, a striped blue and navy blue tie, white shirt, and navy blue jacket.
Tim Doherty, Executive Director

So, we are coming to the end of our summer this year, and what a year it has been.  This Covid19 Virus has turned our world upside down; however it seems to be subsiding, at least, in the eastern part of the country for those of us in New Jersey and New York.  Let’s hope that it continues.  So here are some of the things we tried to do and get done this summer:

During this time of lockdown, Project Freedom has tried to continue with “Business as Usual” while setting up protocols to keep everyone safe.  This meant, closing the offices of our sites, with only having limited staff hours, staff working on and off days, and only responding to emergency maintenance situations.  Of course the grass still had to get cut, and sanitizing needed to be done, so those things continued.  Unfortunately we did have to stop all our recreation events and other programs for tenants.  These we hope to be able to operate again, once the governor provides guidance.

Over the summer, we did provide our tenants at Robbinsville, Lawrence and Hamilton with certain essentials and a purchase grocery card so that they could stretch their existing funds. We also provided masks to anyone who needed them and continue to do so.  Our other sites, worked with outside social agencies who provided food bags and other essentials to our tenants at those sites as well, so that no one should be without some help.

The construction of our new Robbinsville “Town Center” location has been pretty much on schedule, with only minor disruptions, such as waiting for all our windows.  We are still waiting on the final nine windows, but are able to work around those issues, so as to continue progress.

One issue should be mentioned for our present tenants.  Those of you who have been laid off or have had your work hours cut and now are finding it hard to make your monthly rent, please call your office manager to let us know.  You are still responsible for the rent; however, we will try to work with you to develop a strategy that can avoid eviction by establishing a payment plan.  This way you can avoid all the hassle of eviction or debt collection.

Finally, one thing we should all realize is that we are in this together….this virus affects everyone, the rich and  the poor, the disabled and non-disabled, the young and the old.  Let’s take the time to check on our neighbors  and relatives, ask how they are doing…do they need anything….how can we help?  By doing that we can keep each other safe and hopefully, when things settle down and society opens up again, we will be able to come together once again.

A African-American woman sitting iin a wheelchair and wearing a mask looks over multi-colored
Robbinsville staaff member Mary Edmondson prepares to distribute supplies.

PF Communities Work Together During Power Outage

On August 11, 2020, Hurricane Isaias made landfall in New Jersey, causing about 3.7 million power outages across the state.  Freedom Village West Windsor was one of those communities affected by this massive outage. 

With tenants without power or air conditioning, the Project Freeeedom staff at West Windsor and Lawrenceville swung into action together to provide breakfast and hot coffee for the tenants.

Then the tenants of West Windsor also jumped into action to help each other.  They donated thawing food to be grilled by other tenants to provide hot lunch and dinner for everyone.

Project Freedom staff was also able to set up a generator to allow tenants to charge electronics and medical equipment throughout the day.

Project Freedom extends immense gratitude to the staff and tenants who helped their community during this time.

With their help Freedom Village at West Windsor was able to turn a disaster into a community enrichment day.

Two white rectangle tables with coffee in disposable boxes, donuts, and breakfast bars.
Blackout Breakfast

Hotsdogs and other grilled food items on a serving plate with servings tongs. Two hamburgers are on the table with other food.

A white rectangle table with phone charging cables.
A charging Statrion for phones was set up powered by a generator.

From Norman’s Desk – July 2020

Norman A. Smith, Associate Executive Director

For the thirteenth time in my life, I will vote again this year to elect the President of the United States of America.  I remember in in 1972 being forced to vote two weeks ahead of time by absentee ballot because my polling place was in accessible.  I  remember in 1992 being challenged at the poll because of my disability, and I remember the empowerment I felt by calling a state hotline while at the poll to “fix” the situation to my satisfaction.

Times have changed for people with disabilities in terms of voting ease.  Now most polling places and polling booths are accessible, but this year COVID-19 is forcing many states to encourage voting by mail for everyone in many states.  Yes, there are still barriers to voting—especially this year in other states, but there is no excuse for any person with a disability not to vote.  Nothing about us without us, right?

But I want to talk again about something besides voting. I want to talk about people with disabilities getting involved with political campaigns. Of course, COVID-19 is preventing this kind of activity this year, but it is important to see how you can become involved through technology and Social Media.

I became involved with campaigns twice when I first starting out as a disability advocate.  I worked on a statewide Republican campaign for governor and a county campaign for a Democrat.  They both lost, and that may be a commentary of the type of person I support. 

Nevertheless, these campaigns opened doors for me, and, more importantly, these candidates, their staffers and supporters gained a greater understanding of my needs as a person with a disability.  This was a great asset in advocating on disability issues through these same people over the years.

The disability community has a saying: “Nothing about us without us!”  It means that people, programs, agencies, and governments shouldn’t make decisions about people with disabilities without our involvement in the decision process.  Well, the decision process for the 2020 elections is moving ahead on all levels of government.  We need to be involved! 

We need to VOTE on November 3!

 

“My Two Cents” August 2020

Tim Doherty, Executive Director

Many of you know that our daughter, Jen is disabled and lives at our Hopewell Project Freedom community.  Jen started her adult life in 2003 when she moved into our Lawrence site, and lived there until    moving to Hopewell in 2015.  So, since that time, she has been for the most part, on her own, with Mom and Dan providing emergency support when needed.  Having that personal care support has been critical to her living successfully on her own, out in the community, as well as for many of our tenant consumers.

I have often been asked why Project Freedom didn’t provide that service along with our housing.  This is usually the case with agencies that provide and run, Group Homes.  The Group Home model works very well for many disabled consumers, and it consists of three or four unrelated individuals who live at the home with a care giver.  These homes usually provide 24/7 care by a live in aide or aides, and for many families, this model works very well.  The only problem comes when a consumer is not happy with the care provider, and wants to change that provider.  To do that may require moving to    another location or to another different service provider, something that most consumers do not wish to do.

When Project Freedom set out to create our housing, we sought the ability for the consumer to have the most independence possible.  In essence to be “Master of his/her own universe” and to choose how one would live life with as much independence as possible.  If the person needed personal     assistance, then it was up to them to choose and decide who they would work with and with what  agency. 

At Project Freedom housing,  the individual is not tied to one particular living situation but can change service providers at any time.  The only thing we require is that they pay their rent and their  utilities, and obey our housing rules, which is what is required at any apartment complex.  This promotes independence and choice for our consumers without the risk of losing their present housing or apartment if they choose a different personal care provider.

Finally, those of us who are part of the disability community and those families served, need to recognize the tremendous service that these personal care workers provide to our loved ones.  Because of their efforts, they contribute to the independence and freedom that our families and consumers enjoy.  Furthermore, these workers are not paid a rate of pay that reflects their worth, and often have to work two jobs today to make ends meet.  These folks are also our “ Front Line workers “ who have had to meet the demands of today’s COVID -19 days, with their service in our hospitals and other vital service areas. 

So, hats off to all those who serve in this line of work—you need to know that because you are out the

30 Years After a Landmark Disability Law, the Fight for Access and Equality Continues

By Abigail Abrams, Time, July 17, 2020

Judy Heumann remembers the day she went to register for kindergarten in 1952. She’d gotten dressed up and her mother had pulled her wheelchair up a flight of stairs before the principal intervened. Her disability, he said, meant she was not allowed to attend the school. Heumann had polio as a child, and it left her legs paralyzed and limited her use of her hands and arms. Throughout her time in the educational system, and after she graduated and became a teacher and activist, she had to fight for access at every turn.

“It’s totally different today,” she says. That’s thanks in large part to the Americans with Disabilities Act (ADA), the civil rights legislation that was signed 30 years ago this month, on July 26, 1990. Under that transformative law, schools and workplaces are now required to have ramps, elevators, designated parking spots and curb cuts, and to provide accommodations for people with a range of disabilities, including those who are blind or deaf.

Taking inspiration and legal concepts from the Civil Rights Act of 1964, the ADA was designed to protect people with disabilities against discrimination and to ensure that they can participate fully in employment, state and local government services, public accommodations, transportation and telecommunications. The results today are powerful: most public buses have lifts for wheelchairs; disabled children attend school alongside their nondisabled peers; and employers are generally aware that people with disabilities have civil rights they cannot violate.

But if the 61 million Americans with disabilities are now less likely to confront the same problems that Heumann did decades ago, their fight for true equality is far from over. “The ADA is ultimately a promise that has been tremendously impactful in some areas and has yet to be fulfilled in other areas,” says Ari Ne’eman, a senior research associate at the Harvard Law School Project on Disability and the co-founder of the Autistic Self Advocacy Network.   Read More Here

Long Road To Hollywood: Why Actors With Disabilities Have Yet To Be Recognized

By Wendy Lu, The Huffington Post, July 19, 2020

A pedophilic circus performer. A comedic womanizer. A killer.

These were just a few of the roles that Danny Woodburn was offered when he began auditioning for film and TV roles in the early 1990s. Woodburn, a self-described little person, quickly found that nearly every character he portrayed was “miserable,” broken or evil.

“The go-to, I think, for little people is to make them creepy or animalistic,” the actor and producer told HuffPost.

Even after landing a recurring role on “Seinfeld” and scoring gigs on shows including “Watchmen,” “Jane the Virgin” and “CSI,” Woodburn said he still came across casting opportunities that recycled tiresome tropes invoking pathos for “the sad little man.” Just a couple of years ago, casting agents tried to pitch him on a role in a Christmas special by saying he’d get the chance to kiss a famous performer.  Read More Here

“My Two Cents” – June 2020

Tim Doherty, Executive Director

During this time of the pandemic, many functions and events have been forced to cancel or re-schedule for maybe another time.  One of the most heartbreaking is the cancelling of graduation for all our students, robbing them of the chance to relish their achievements.  And as sad as that is, every generation has been forced to endure some kind of  interruption from events out of their control. This happened to my father in law when he was called up for WWII. 

 My son recently wrote about his own graduation which he had coupled with his grandfather, 50 years later.

 

Graduation Moments Deferred
Written by Tim Doherty Jr.

Graduates in the class of 2020 are missing out on one of the great rites of passage. Never in the past would we have thought the ability to stand on a stage in a gymnasium or on a football field filled with our peers and families would seem like such a privilege, but alas only in loss do we sometimes see the value of what we had. While the ceremony itself adds little to the educational accomplishments of the class, that ‘graduation moment’ somehow acknowledges, celebrates and completes the work of the student, allowing them to begin their next chapter.

While the pandemic is itself without precedent, its disruption to our important life events isn’t. I offer a story of a graduate who also didn’t cross that stage with his peers, but instead got a more personal opportunity to celebrate his accomplishments.

My grandfather, James Wilson, completed his engineering degree at Lehigh University in 1944. His Lehigh experience was one of a poor kid, commuting from a nearby town, during the tumultuous war years. Everything was focused on the war, even the academic year was altered to a trimester schedule to speed the process of minting graduates for the war effort.

In his last semester, he was selected for an assignment in the Merchant Marine, took his finals a few weeks early and shipped out before commencement ceremonies were held. Like so many who sacrificed greatly for the defense of our country, he never dwelled on missing graduation, but it was none-the-less a part of his story. His degree arrived in the mail in a cardboard tube.

Fifty plus years later, I began my own Lehigh education and grandpa got to observe a different version of ‘the college experience’. I lived in a dorm and enjoyed campus life, and grandpa was a frequent visitor and supporter. We enjoyed sharing Lehigh and although already close, were brought closer by this shared bond.

When it came time for me to graduate, I contacted the university president who agreed to the idea– grandpa should walk in commencement ceremonies with me. It took a little prodding from my grandmother to get him to agree because he didn’t want to take away from my graduation. But I can honestly say it was a far more special day because he participated. After my name was called and I walked across the stage, shook the hand of the University president and received my degree, I turned around just as the announcer read “James Francis Wilson.” Immediately, the whole arena roared with applause and the crowd gave the 75 year old graduate a standing ovation as grandpa finally had his ‘graduation moment’.

While it’s impossible to know what either my or my grandfathers graduations would have been like otherwise, the circumstances of his commencement deferred gave us a special opportunity to personalize our experience. I offer this story because it might be the case for the class of 2020 that your ‘graduation moment’, although deferred, is now yours to choose. Perhaps instead of video commencement or drive thru graduation, the best idea is to offer the class of 2020 the opportunity to participate in a future ceremony (hopefully not 50 years later), maybe with a sibling or at a particular reunion anniversary– whatever might make it even more meaningful to the individual. I hope the administration of schools and universities will give this some consideration, so that instead of the class of 2020 being the class who didn’t have a graduation, they’ll be the class who got to have their ‘graduation moment’ on their own terms.

 

 

“My Two Cents” – July 2020

Tim Doherty, Executive Director

These past months have been some very difficult ones, having to deal with this Covid-19 virus.  Many of us have had to schedule work hours so that we would reduce the likelihood of personal interactions with others.  We have reduced our general freedom to travel or visit, opting for staying home, or at least limiting the places that we go to.  My day out seems to be our weekly visit to the grocery store, then back home.  So, for me, work, home or grocery store, and that has been it.

For those who have been laid off, or who have had their work hours reduced, that has also reduced the amount of income they are now getting.  For some of our tenants this is true.  Yet we are constantly    approached by outside agencies and groups who perceive the need, and then try to answer the call.

At Project Freedom we have been fortunate to have some local agencies provide food and other household goods for our tenants.  The local organization called “Arm in Arm” has, on a regular basis, dropped off bags of groceries for our tenants.  They have delivered to all of our Mercer County sites several times during this pandemic. 

Another local agency, the Jewish Family & Children‘s Service  (JFCS) has also brought food    supplies to our Mercer County sites with their mobile Food Truck. They were referred to us by Board member, Bob Buda Jr. who helped us with their connection.   We received a check for $1,500 from the local Princeton Corridor Rotary for tenant supplies and our local pizzeria, in conjunction with Nottingham Insurance Agency, Varsity Pizza also brought 42 pizzas, last Thursday, for our tenants at Lawrenceville. 

These good works continue to happen as we make our way through this pandemic.  Americans have   always risen to the occasion when necessary, and we are seeing that today.  That is why, through this column, I want to publicly thank Beth Englezos of the JFCS, David R. Fox of Arm in Arm and members  of the Princeton Corridor Rotary for their support in these challenging times. And to small business owners, such as Kevin Murphy of Varsity Pizza and Jack and Greg Blair from Nottingham Insurance for their community support and their work for Project Freedom.  We will survive this virus and come back stronger as a community and nation.  So, for now, let’s just take care of one another.