From Norman’s Desk – March 2020

Posted on February 25, 2020 by Norman Smith

Norman A. Smith looking up at camera smiling dress in a green shirt and cap with CERT written on both

This 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By the time you read this, any accurate information that I can pass along will be outdated and may be inaccurate.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

Posted on January 31, 2020 by Norman Smith

Last 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

Posted on January 3, 2020 by Norman Smith

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

Posted on September 11, 2019 by Norman Smith

This month marks eighteen years since the attacks of September 11^th. 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

Posted on May 10, 2019 by Norman Smith

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.

From Norman’s Desk – February 2019

Posted on February 4, 2019 by Norman Smith

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 116^th 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

From Norman’s Desk – November 2018

Posted on November 5, 2018 by Norman Smith

The petition begins: The New Jersey Disability Community wholeheartedly opposes efforts by companies, cities, and states to ban single use plastic straws. These policies create barriers to independence, community integration, and daily living for people with disabilities, work counter to our community ideals of universal access, and place an unnecessary burden on people with disabilities to fight for the accommodations we need to live independently.

The petition was started because well-intended but unwitting legislators are proposing legislation that will literally force people with disabilities who need straws to drink to bring their own to restaurants. The proposed legislation is aimed at saving whales and turtles by keeping plastic straws out of the ocean. A noble and worthy cause, but why pick on people with disabilities who need straws?

Many people with various types of disabilities rely on single-use plastic straws to drink, eat, and take medication independently. Many people reading this can relate to this. Currently, no alternatives to single-use flexible plastic straws exist that are safe, sanitary, and affordable for people with disabilities. Until these alternatives exist, it is unacceptable to create more barriers to independence and access by restricting plastic straw use.

Much of the fervor surrounding plastic straws is based entirely on viral videos and false statistics. Plastic straws make up only about .03% of plastic waste in the ocean (fishing nets by contrast make up 46%). To risk the rights to independence and liberty that our community has fought for only .03% of waste is unacceptable to our community! Furthermore, “offer-first” policies at restaurants have been shown to reduce straw use by up to 80% without creating any barriers to access.

Everybody wants to save the whale and the turtle, but nobody outside of our community seems to grasp that straws are tools for people with disabilities to live healthy, independent, and productive lives as equal members of our community. The disability community believes in creating policies that protect the environment, but we also believe that this can be done in ways that do not harm the disability community.

Though some cities and states have incorporated “disability exceptions” into their straw ban legislation, the disability community remains firm in our opposition. Medical exceptions force people with disabilities to disclose their disability to store workers. Requiring this puts an undue burden on disabled customers who already experience discrimination and victimization.

Misconceptions and stereotypes about what a “real” disability looks like can also lead wait staff to question the validity of a customer’s need for a straw causing them to deny, harass, or shame the customer. Do we want teenaged wait staff deciding who has a disability?/

The harsh penalties established by straw ban legislation provide incentive for vendors to err on the side of caution by routinely denying straws to anyone who requests them. It is also unlikely that stores will continue to stock plastic straws because of the (false) perception that people with disabilities make up only a small percentage of the population. This again creates an added barrier for people with disabilities. Now, when we decide to go out to dinner, not only do we have to call ahead to find if the space is accessible, but we must also find out if they have straws

While some may suggest that people who need straws simply carry around their own, this is an unfair request for several reasons. First, with straw bans sweeping the nation, single use plastic straws will inevitably become more expensive and difficult to obtain even for individual use. Second, it creates an unnecessary financial burden on people with disabilities who already experience increased rates of poverty, functioning as a form of “disability tax.” Eventually, these costs will be passed on to the taxpayer as the need for straws becomes “medicalized” to justify them as medical necessity so Medicaid picks up the ever increasing expense

In light of all of these reasons and more, the disability community is asking the New Jersey Legislators three things. First to reject any legislation that restricts access to single use plastic straws. Second, create an action plan to ensure the voices of people with disabilities are heard on all legislation before it reaches a vote. Finally, pass legislation that explicitly protects the right of people to access single-use plastic straws upon request in accordance with the ADA.

Maggie Leppert of the Alliance Center for Independence provided much of the factual foundation for this column. My thanks to Maggie, a future leader in the NJ disability advocacy community.

Norman A. Smith
Follow me on Twitter @normansmith02
Follow us on Twitter @TheFreedomGuys
“Like” us on Facebook.com/ProjectFreedomInc

“My Two Cents” – November 2018

Posted on November 5, 2018 by Norman Smith

So, as most of you know, Project Freedom holds our “Angel Award Dinner Gala” around this time in November. It is our once a year fundraiser which honors four individuals or organizations that have somehow contributed to furthering the cause for those with disabilities . Former Hamilton Mayor John “Jack” K. Rafferty was our first honoree, twenty one years ago, and we have continued ever since. I started this event when I became CEO, in an effort to gain support for Project Freedom and raise some funds for our tenant programs.

And each year I would work along with the Board Committee and Staff to generate auction items and to get people to attend our dinner. So, I was flabbergasted when the Committee suggested honoring me this year, along with our other honorees. Of course, I am humbled by the honor and by the fact that the board would consider me a worthy candidate. However, I am reminded that this is also a fundraiser, so that I am also expected to raise funds by getting as many folks that I know to attend this event. Of course I am happy to do so.

Now, in accepting this award, I need to recognize all our Project Freedom staff. We have had tremendous growth over these past six years, and it is due largely to our Executive Team, but also all staff members. Certainly credit goes to Tracee Battis, our Director of Housing Development; Steve Schaefer, our CFO, my own better half, Marion Doherty and, of course, our co-founder, Norman Smith. Also, our new ( almost two years now ) Compliance / Property Manager, Frank Sciarrotta, who contributes daily in supporting our project managers. These folks make my job much easier and enjoyable.

Big Credit goes to our project managers, who are on the front lines every day. Jackie, Joanne, Ceil, Dara, Laurie, and Sammi, and their support staff, Melinda, Jen, Bri, Joyce, Arlene, Judy, and Savannah, who manage the day to day operations of communities, so that our tenants can live in beautiful, well kept housing.

To our accounting Staff, Heather and Sakina, who now manage the books of twenty four entities, each of which need to be kept separately.

To our maintenance staff, Ed, Doug, Ross, Johnny, Frank, Damien, Mike, John, Len, Tony, Jim and Paul, who cut the grass, fix the plumbing, plow the snow and in general keep our buildings and grounds impeccable– I am always proud to show our properties to any visitors–be it the first project or the last–they are housing to be proud of.

To our recreation staff, Dana, Maria, Esther, Mary who work to create social opportunities for our tenants to enjoy, to get people out of their apartments and experience some fun.

To our tenant workers, Nate, Jen, Coby, Jeffery and Jason, who are always reliable.

Finally, to our Board Chair, Herb Schneider, and our Board of Trustees, who bear the ultimate responsibility for Project Freedom’s growth and advancement. Our Board meetings and committee meetings are robust, discussions, with people who care about Project Freedom and the welfare of our tenants. They are always looking to ensure that we are doing quality work that makes a difference in people’s lives.

So, I am honored to be recognized and to share our successes with all our Project Freedom family.

From Normans Desk – September 2018

Posted on August 31, 2018 by Norman Smith

This month marks seventeen years since the attacks of September 11^th.

For many, the memory of that awful day is fading, but my memories are vivid down to my shirt and tie. The day started out so bright, beautiful, and refreshing and ended so dark and frightening. September is also National Preparedness Month when preparedness experts try to catch your attention to prepare for another, inevitable, dark and frightening day.

Every year since the attacks, I choose to honor three fragments 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.

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 o’clock 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.

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. Check out my Emergency Preparedness Desk page on this site by clicking here.

From Norman’s Desk – August 2018

Posted on August 8, 2018 by Norman Smith

This year will be the 23rd time in my life that I cast a vote for a member of Congress. I remember back in 1972 being forced to vote two weeks ahead of time by absentee ballot because my polling place was not accessible. I remember in 1992 being challenged at the poll because of 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. Voting early by mail is encouraged for everyone in many states. Yes, there are still barriers to voting—especially 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 about something besides voting. I want to talk about people with disabilities getting involved with political campaigns. I have done it twice when I first starting out. 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.

“Nothing about us without us” can take many forms at all levels of government. But we need to be involved to make this come true! We need to be involved from the start by voting! Before we go to public meetings, before we demonstrate, before we sit-in, before we get arrested, WE NEED TO VOTE!!! The rest is meaningless unless we exercise our right to vote.

To paraphrase our great leader Justin Dart: We need to vote as if our lives dependent on it! We all need to vote on November 6!

From Norman’s Desk