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. 

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!

 

From Norman’s Desk – July 2020

Norman Smith ineen shirt and cap with a sash over his shirt with a female using crutches standing on his right. A male is standing to her right, An American flag is behind the male and female.Our nation celebrates its Declaration of Independence from Great Britain on July 4th.  We celebrate the idea that this nation wanted to be free from rules, regulations, and laws created without input from the Colonies.  This year the celebration will be different for me.

We will try celebrate the concept that each person has equality in the eyes of the law even though we know that it is not reality for many.  People are treated differently     because of skin color, race, gender, gender identity, age, and, yes, disability.

I live with a disability, so I focus on those inequities in my writing.  Nevertheless, the struggle for racial equality has never been far from my life. I lived in Philadelphia in 1962 at a school for kids with disabilities.  The direct care staff was made of African-Americans, and I remember watching the Civil Rights struggle on the TV news with them.  I remember their tears and their quiet anger.  I remember trying to make sense of why black people were being beaten.  It didn’t make sense to me.

The turbulent 60’s went by with all the racial, social, and political strife, and in the mid-70s I found myself at Long Island University riding an elevator with a schoolmate.  The schoolmate was black, male, and in NYPD handcuffs.   I knew him well since we served on the Dorm’s Council together.  He was arrested by a white police officer for (I later learned) a minor charge.  My schoolmate said something to me in greeting and was promptly shoved violently against the elevator wall by the officer. 

I was shocked and angered.  My schoolmate later returned to warn me not to say anything about the shoving.   He said it would make his case more difficult. I agreed, but this incident opened my eyes to what “equality under the law” actually means.

As we celebrate Independence Day, we need to remember equality is not universally applied.  We need to remember the sacrifices of those who have died for the concepts of independence, liberty, and freedom.       

Sometimes they died without enjoying those lofty concepts. Sometimes they didn’t die but moved into my world to endure additional inequalities of a disability.

We must also remember that the fight is not over for many people. Expecting the promise of freedom to be obtained or kept without struggle and sacrifice is foolhardy. Our history teaches that participatory governance over oneself or one’s country means stepping up to participate and sacrifice.  Individuals must take up the cause of freedom, work together, and battle for the promise to be kept.  This is true now for many people with and without disabilities. 

So, while we celebrate what happened 244 years ago, let us remember for many of us the struggle for freedom continues! 

 

From Norman’s Desk – May 2020

Norman A. Smith looking up at camera smiling dress in a green shirt and cap with CERT written on both
Norman A. Smith, Co-Founder Associate Executive Director

It is May!  It is time for my annual rant as we near Hurricane Season.

It is time to focus on the looming hurricanes season and the predictions by the Colorado State University tropical study program.  This year is no different—especially because we are in the tail end of the first wave of a pandemic.

Yes, I wrote “the first wave.”  Historically, pandemics come in three waves, and the severity of those waves vary.  Dr. Anthony Fauci, the director of the National Institute of Allergy and Infectious Disease, has already stated that the next wave of COVID19 will hit this Fall and will be more severe.  

Fall is also the peak of hurricane season, and the idea of a major hurricane crashing into to the US during another severe wave of COVID19 is frightening.  But it needs to be anticipated and planned for with the     lessons we have learned the past three months. We have already seen tornado rip through states this past month complicating the fight against COVID19.

As I write this, the American Red Cross is sheltering nearly 900 people in four states hit by tornados.  Luckily, hotel rooms were available for a better sheltering option than public schools during this outbreak.  Imagine Super Storm Sandy happening now or a major extended power outage.

So now is the time to prepare for both the second wave and foreseeable disasters as we look to opening back up again. If you realized that you should have done a specific task or tasks before the COVID19 shutdown, use that knowledge to prepare yourself better for the next wave and other potential disasters.

That prediction came true over five years ago with Hurricane/Super-Storm Sandy slamming into New Jersey.  This year’s predictions by Colorado State University’s team, now his for a “slightly below” average season for 2019. 

This is the 37th year that the  hurricane research team at the Department of Atmospheric Science, Colorado State University has issued the Atlantic basin seasonal hurricane forecast.  Dr. William Gray, Ph.,  launched the report in 1984 and continued to be an author on them until his death in 2016. He team is now headed by Dr. Philip J. Klotzbach.

Dr. Klotzbach’s team’s initial prediction is:

A total of 16 named storms with eight hurricanes and four of them becoming major hurricanes.

Last year’s prediction was 13 named storms, five becoming hurricanes, and two reaching the major threshold. Thus, the prediction for this year is for more storms with a greater potential of severity.

The actual number for the 2019 season was 18 named storms; three of these storms turned into hurricanes with two being “major” in power and scale.  So they under-estimated the number of storms but overestimated their severity.

The prediction also estimates the probabilities of at least one major hurricane making landfall:

For the Entire U.S. coastline – 69% (Last year it was 48%)

For the U.S. East Coast including Peninsula Florida – 45% (28% last year)

With this year’s prediction in mind and remembering what we have just gone through, it is not too early to start thinking about severe weather and being prepared for it.  The first step is being more aware of both the potential threat and the “emergent” or imminent threat.  Here is what FEMA recommends that people with disabilities do to address that need.

 

 

 

 

From Norman’s Desk – March 2020

Norman A. Smith looking up at camera smiling dress in a green shirt and cap with CERT written on bothThis month you will be reading and hearing more about the emerging outbreak of Coronavirus-2019 (officially named COVID-19). The situation is very worrisome—especially if you have a disability.
 
Nevertheless, one of the key responses to this type of situation is getting accurate information and trusting the source of it. 
 
I’m going to be blunt about this: The “tinfoil hat wearing wingnuts” are out there already with disinformation to fit their own agendas or mania. These theories are fabricated using facts, half-truths, and outright lies woven together to fit any point of view about health issues or politics. They can be laughable except these flights of fantasies will obscure the correct information and messaging needed to keep us safe and well.  Misinformation is disruptive and will lead to people dying.

I saw one tweet that contained a claim that was not true, and the link for more information redirected me to an online store to buy masks, but then I saw another tweet dismissing the use of masks.  People are trying to make a quick buck from the outbreak, and people are trying to scare us for their own pleasure.

My message is this: Do not rely on Facebook or other social media to for information to make urgent health decisions!  

Your Facebook friends may be  good sources for gossip, recipes, sports trivia, or where to go fishing, but accurate information in these situations may not be a Facebook post shared a zillion times.  The quantity of shares or views does not indicate the quality or accuracy of the information.

Sadly, even our elected officials can pass on erroneous information that they may have heard or read from an unreliable source. It is easy to pass on tainted information as you try to appear to be on top of everything, and it is hard on the ego to appear not to know authoritative information.

By the time you read this, any accurate information that I can pass along will be outdated and may be inaccurate.  Personally, I rely on the Centers for Disease Control and Prevention (CDC) for information, I check CDC.gov daily for updates. 

From Norman’s Desk – February 2020

Norman A. Smith looking up at camera smiling dress in a green shirt and cap with CERT written on bothLast month saw the Democratic presidential candidates begin to focus more on people with disabilities and our issues.  This took place as candidates dropped out of the race.

Each of the major Democratic candidates completed the 15-question 2020 Disability Voter Candidate Questionnaire  written by RespectAbility, a nonpartisan national nonprofit organization fighting stigmas and advancing opportunities so people with disabilities can fully participate in all aspects of community. The nonpartisan voter questionnaire is about   a variety of disability issues was sent to all the viable presidential candidates. 

This candidate canvasing was being done in conjunction with RespectAbility’s online publication TheRespectAbilityReport.org, an online publication covering the intersection of disability and electoral politics. The    answers to the questionnaire will be turned into nonpartisan voter guides for all 50 states.  The same questions will be sent to candidates for governor and senate as well.

When Minnesota Senator Amy Klobuchar released her detailed disability policy plan  the senator held a live event. Klobuchar detailed her plan and held a panel discussion with three local disability experts, delving deeper into specific aspects of her plan.

In a press statement released prior to the disability-focused event in Cedar Rapids, Iowa, Klobuchar cited her “a strong track record of standing up for people with disabilities.” Key highlights of the plan include commitments around long-term care, expanding healthcare access, and advancing economic opportunities as well as promoting disability rights at home and abroad, as reported by Lauren Appelbaum for TheRespectAbilityReport.org

Meanwhile, Massachusetts Senator Elizabeth Warren continued to outreach to the disability community with a live chat on Twitter with advocates with disabilities from around the country.  Then in her closing statement for the CNN/Des Moines Register Debate last month, Warren specifically mentioned people with disabilities in her vision for what her presidency will bring.

Mayor Pete Buttigieg of South Bend, IN, took to Twitter as well to reach people with disabilities.  Buttigieg himself  answered questions live on Twitter from advocates during a Disability Town Hall.  His campaign also released on Twitter a series of videos featuring supporters with disabilities.

While these efforts are notable, many disability advocates want the mainstream news media to pay attention to disability issues as part of their overall coverage of the candidates.   For the first time in my political memory, a debate moderator asked a question specifically on disability policy during the December debate.

“Are there specific steps you would take to help people like Kyle to become more integrated into the workforce and into their local communities?” asked Politico’s Tim Alberta, citing as an example a young adult with a disability from Iowa.

This sent the “disability-Twitter-verse” into orbit.  Unfortunately, only three candidates were able to respond, but Elizabeth Warren seized the moment to highlight her background as a Special Education teacher.

Readers have asked me which candidates have better disability policies, and my answer will always be as a journalist: Look for yourself. Evaluate for yourself. Make your vote count for what is important to you.

 

 

From Norman’s Desk – January 2020

Norman A. Smith, Associate Executive Director

The new year brings another president campaign and election into greater focus.  People with disabilities are expected to have major impact on this   election, and many campaigns retargeting people with disabilities to gain our votes.

As reported on by Eric Ascher for RespectAbility.org, seven presidential  campaigns made history together last November in Iowa as they participated in a Democratic Party forum, Accessibility for All, focused on issues affecting people with disabilities. This is the first time this campaign season that a forum was held specifically on this topic.

The forum was moderated by Catherine Crist, the chair of the Iowa Democratic Party Disability Caucus, and by Cindy Hanawalt, MD PhD, Immediate Past President of the Linn County Medical Society.  Hanawalt’s questions focused more on health care while Crist’s questions focused on employment, education and other disability rights issues, reported Ascher.

Six candidates participated in the Forum themselves: Sen. Cory Booker, Mayor Pete Buttigieg, former Rep. John Delaney, Sen. Amy Klobuchar, Sen. Bernie Sanders, and businessman Andrew Yang.  Former Sen. Chris Dodd spoke on behalf of Vice President Joe Biden. 

The questions were generated by Iowans with disabilities. There were approximately 100 people in the audience at the Forum, with some audience members coming and going throughout the day, wrote Ascher.

This is another sign that politicians are taking our vote seriously enough to direct time to obtain it.  Time is second to money as a vital resource to any campaign, and six major candidates spent their time to engage directly with people with disabilities on our issues. 

In addition, disability advocates praised last month’s Democratic presidential debate for including a prominent question about how candidates planned to address the needs of people with  disabilities.  Among the three candidates who got a chance to respond, Massachusetts Sen. Elizabeth Warren’s comments drew some of the most lavish praise.

Readers have asked me which candidates have better disability policies, and my answer has been and will be: Look for yourself. Evaluate for yourself. Make your vote count for what is important to

you.

People with disabilities need to value their votes by voting for the candidate whom addresses their needs and values the best.

September 11th Remembered

Norman A. Smith looking up at camera smiling dress in a green shirt and cap with CERT written on bothThis month marks eighteen years since the attacks of September 11th. It is also National Preparedness Month is recognized each September to promote family and community disaster and emergency planning now and throughout the year. The 2019 theme is Prepared, Not Scared.  The timing is no coincidence.

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.

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 Capitol or the White House or 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.

How many people with disabilities died that morning 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.

Every victim of these attacks 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.

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. 

 

 

 

An Open Letter to Mothers of Disabled Children

by Erin Andrews, PhD  —  Disabled Parenting Project (www.disabledparenting.com)  

 Erin Andrews serves as a parent advisor and co-researcher for the DPP. She is a board certified rehabilitation psychologist.

As a disabled mother, I can’t help but reflect sometimes on my own entrance into the world. As a member of several online (primarily nondisabled) parenting groups, I find myself triggered by social media posts about babies born disabled or young children being diagnosed with disabilities. As a way to process my own emotions, I decided to write this letter. It is a letter I wish my own birthmother could have had, and I something hope new mothers of disabled children will read.


Dear Mom,

I know you’re confused and scared. I don’t look exactly like you expected. The doctors tell you I’m deformed, that I’m defective. You are supposed to be devastated. Don’t be. Look at me – touch me. Suspend judgment while you explore my tiny new self. Notice how the contours and folds of skins are uniquely mine. I came from you – you made me, and I’m perfect. 

READ more of the Open Letter by Clicking Here

From Norman’s Desk – February 2019

Norman A. Smith, Associate Executive Director

Thousands of people with disabilities turned to YouTube and Facebook at 3:00 pm on January 15 this past month to watch history. A piece of civil rights legislation reintroduced on that day to the 116th Congress to fight for the independence of all people, but especially people with disabilities and senior citizens.

The Disability Integration Act — originally introduced in 2016 by Sen. Charles E. Schumer, D-N.Y., and F. James Sensenbrenner, R-Wis. — prohibits states or local governments that provide institutional placements for individuals with disabilities who need long-term assistance, and prohibits insurance providers that fund such long-term services, from denying community-based services that would enable such individuals to live in the community and lead an independent life.

Without this in place, people who are eligible for services could be forced into nursing homes or other institutions by their insurance. This legislation ensures that disabled Americans have a right to live and receive services in their own homes.  It prevents people with disabilities from being forced into expensive institutional settings because of government regulation.

The Disability Integration Act also requires public entities to address the need for affordable, accessible, integrated housing that is independent of service delivery.

Watch parties were held at Centers for Independent Living and other advocacy genies throughout the nation. One was held in my office.  We came together with excitement and a tremendous determination to get the D.I.A. passed in the 116th Congress.

A little historical perspective.  The D.I.A. was crafted from 25 years of work dating back to the signing of the Americans with Disabilities Act.  The original legislation was first introduced by Speaker Newt Gingrich (R, GA).  Yes, the stalwart of Conservative value and fiscal policies first introduced the basis of today’s D.I.A..     Gingrich saw the value of keeping people with disabilities and seniors out of nursing homes.

Unfortunately, today’s Speaker of the House, Nancy Pelosi (D, CA), has ignored requests for two years to   become a co-sponsor of the D.I.A. Yes, this champion of Liberal ideas and fiscal policies and her immediate party subordinates have shamefully not responded to the disability community’s requests.  This is the same person who lauded people with disabilities who put their bodies on the floor to stop the repeal of Obamacare.

My point is the Disability Integration Act cannot be looked at through Liberal or Conservative perspectives.  It has an elements of both because it saves taxpayers and insurance company’s money while keeping people living with both freedom and support.

So far, three of New Jersey’s congressional representatives have signed on as co-sponsors. They are: Sen. Cory Booker, Rep. Bonnie Watson-Coleman, and Rep. Donald Payne.  I hope to name more next month as I use my personal Twitter account to “recruit” co-sponsors from our state. 

There is great expectations that the D.I.A. will pass this year.  I expect passage in the House but not in Senate this time, but we shall determine if grassroots advocacy by people who cannot walk, talk, see, or hear works again!

Norman A. Smith
Follow me on Twitter @normansmith02