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.
We also celebrate the concept that each person has equality in the eyes of the law. Although many are still tramping upon this basic concept today, its promise has survived thanks to the sacrifice, blood, sweat, and tears of many.
As we celebrate Independence Day, we need to remember what we are celebrating and why. We need to remember the sacrifices of those who have died for the concepts of independence, liberty, and freedom. We must also remember that the fight is not over for people with disabilities, and, indeed, remember that the fight is only beginning for many of us.
The promise has been slow in coming for people with disabilities, and for many of us, equality is still not here, is still a concept enjoyed by others, and is a promise that still needs to be kept.
The promise is a lofty one, yet for some people with disabilities the promise translates into more practical considerations: the freedom to make choices in their daily lives, to be responsible for their lives, and to be a contributing part of their community.
Freedom and independence are grand sounding words, but for some they mean the right to do simple tasks.
Freedom and independence are empty and hollow words when elected officials ignore our needs and discount our vote.
Expecting the promise of freedom to be kept without struggle and sacrifice is foolhardy. Again, 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 people with disabilities.
So, while we celebrate what happened 242 years ago, let us remember for many of us with disabilities the struggle for freedom continues! Join me on July 16 to “RevUp the vote by people with disabilities at our rally at the NJ State House. Get more information by clicking Here
For most of my life and well into adulthood, June represented the end of school and the beginning of the Summer season. Even after leaving college too many years ago, June felt like the end of a period of intense work.
More recently, as my readers are keenly aware, June became my month to remind everyone to be prepared for Hurricane Season, which “officially” begins June 1.
Much more recently, June has been the month to write about being a father. I have only celebrated Fathers’ Day nine times as a father before this year. Celebrating the day as a father is far different than celebrating as a son with my father. For one thing, a son is trying to show his Dad his love and appreciation that he feels for him while the Dad wants to show his son (or daughter) the wonderment and pride of being Dad. Being Dad to any child is wonderful and awesome. Father’s Day is the icing on the proverbial cake.
Fatherhood and Motherhood can be daunting and pleasurable at the same time. Every parent knows this mixture of feelings. I think, however, those of us with obvious disabilities also feel an additional mixture of emotions. Indeed, there is pride of your child and pride of being a parent when others think you should not or cannot be a parent.
There is also the apprehension of being judged by others because you have a child and a disability. Your capabilities and skills as a parent are constantly being scrutinized to see if, indeed, you can take care of your child. This scrutiny is always in the back of your mind as you try to let your child experience what other children experience.
The article below by Robyn Powell, an attorney and a nationally recognized advocate fr people with disabilities, describes some of the fears and harassment that parents with disabilities face throughout the nation. The parents profiled in Robyn’s in depth piece are themselve “frontline” disability advocates who have the fortitude to fight for their children, and this makes me frightened for the parents with disabilities who have not yet learned these skills. How many have lost their children because the “system” can be overwhelming?
This is the unfortunate price we pay by being parents with disabilities. Before President Obama left office, the White House sponsored a conference on parenting with disabilities because more people with disabilities are paying that price nationally. The price can be minimal for some, higher for others, but well worth it to hear your son say “Happy Fathers’ Day, Dad!”
Follow me on Twitter @normansmith02
PARENTS WITH DISABILITIES FACE AN UPHILL BATTLE TO KEEP THEIR CHILDREN
by ROBYN POWELL – Pacific Standard — January 3, 2018
Nearly one in 10 children in the United States are at risk of being removed from their home by a child welfare agency simply because their parent has a disability.
In October, a lawsuit was filed on behalf of five parents with disabilities who had their children removed by New York’s Administration for Children’s Services, alleging widespread discrimination. What happened to these families is not unique or uncommon; rather, their tragic experiences are part of a national phenomenon: Parents with disabilities are disproportionately involved with the child welfare system and once involved are more likely than non-disabled parents to have their parental rights terminated.
For more than four years, Amy Fabbrini and Eric Ziegler have been fighting with the state of Oregon to regain custody of their sons, Christopher and Hunter. Both Fabbrini and Zeigler have intellectual disabilities. “I tend to learn a little slower than others but it in no way affects my abilities to safely care for my kids and has no effect on my day-to-day living,” Fabbrini says.
Christopher was removed by Child Protective Services in September of 2013 when he was only four days old, after Fabbrini’s family contacted the agency, concerned for Fabbrini and Ziegler’s ability to care for the baby. In February of 2017, CPS removed Hunter, when he was only two days old, directly from the hospital. According to Fabbrini, “they have been in the system ever since.”
Since their initial involvement with CPS in September of 2013, the couple has enrolled in several parenting classes. “[CPS] said if you take this parenting class or if you do this course or you do these steps then that will increase your chances of getting your son back. Well, here we are four years later and we still do not have our children,” Fabbrini says.
The couple’s quest to regain custody of their sons has persisted for four years and included many courtroom battles. As Fabbrini and Ziegler navigated these trials, they also became figures in the fight for disability rights. “Our main goal is that we want our kids back and to have a family. We also want to stand up for other families in this situation and help them have a voice.”
For Carrie Ann Lucas of Windsor, Colorado, these issues are both personal and professional. Lucas has mitochondrial myopathy, a type of muscular dystrophy that requires the use of a power wheelchair and ventilator assistance to breathe. She is hard of hearing and has low vision. Lucas is an attorney and has represented parents with disabilities for nearly two decades. She currently works for the state agency that oversees court-appointed attorneys.
Lucas is the mother of four children, all of whom also have disabilities. She has adopted each of them from foster care. Despite the state deeming her capable to adopt four times, Lucas has been referred to CPS on numerous occasions, and says she has “lost track” of the exact number.
One time, for example, her daughter’s school filed a report with CPS because the girl’s ponytail was “too tight.” Other times, Lucas was reported to CPS for neglecting her children because she wanted them to be independent and autonomous, such as requiring her teenage daughter to drive her own wheelchair from the school bus to the door of her home.
Every referral to CPS increases the risk of further action, even if the report was based on senseless allegations. “If people have multiple referrals, then every single one gets investigated,” Lucas says. These investigations can be traumatizing for families, especially for children who came from foster care and have long involvements with CPS, like Lucas’ children.
Lucas’ first negative encounter began nearly two decades ago when she set out to adopt her niece, a process that lasted 16 months. It took a judge threatening to put the CPS worker in contempt of court if she didn’t immediately place the child with Lucas. Lucas says the CPS worker told the judge, “There is no way that a handicapped woman can take care of a handicapped child. We’re going to be picking up the child within two weeks.”
“Well, we’re 18 years down the road, and she’s still with me,” Lucas says.
Lucas’ experience motivated her to attend law school and become an attorney. “I thought, if this is happening to me, and I have a master’s degree [and] I take care of other people’s children all day long, what’s happening to every other parent?”
Nicole Brisson of Sage Haven Associates, Inc. conducts parenting assessments of people with disabilities and provides recommendations to CPS and the courts. Brisson’s intimate involvement with child welfare cases involving parents with disabilities offers her a unique perspective.
“I think that the lack of understanding of community members and stigma causes parents with disabilities to be under a microscope more so than parents without disabilities. A bump or bruise on a child of a parent with a disability who is learning to walk might warrant a call to CPS, whereas it would not if the child’s parent did not have a disability,” Brisson says.
Once parents with disabilities are reported to CPS, they face pervasive stereotypes that often have devastating consequences. CPS has an obligation to act, which often means hiring experts to guide them. Yet Brisson claims many experts have little to no training or experience working with people with disabilities, and are unable to adequately evaluate parents and measure progress. “Courts do not realize this, err on the side of caution, and move to terminate rights often without evidence that the parent is unfit.”
Bias toward parents with disabilities transcends all disability types—physical, sensory, intellectual, and psychiatric. However, Lucas says certain segments of the disability community experience worse treatment. “I think [parents with physical disabilities] get a lot of referrals, but we don’t get a lot of cases,” she says, referring to the difference between doing a welfare check and opening a full-fledged investigation. “For parents with intellectual disabilities and psychiatric disabilities, referrals often turn into cases.”
For Fabbrini and Ziegler, the fight is far from over. A circuit judge issued a ruling four days before Christmas that deemed the pair fit to raise Hunter, stating, “I feel the threat articulated to Hunter is fairly amorphous. … There is no allegation that they’re not able to meet his basic needs.” Though they were able to take 10-month old Hunter home from foster care, they’re still battling to bring four-year-old Christopher home as well.
The rights of parents with disabilities and the rights of children are not mutually exclusive, yet in ensuring the rights of children, the rights of parents with disabilities can often go by the wayside. Ensuring that disabled parents have the opportunity to raise their children and are provided support, if needed, benefits both parents and children—the onus now falls on Child Protective Services agencies to adequately protect both children and parents with disabilities.
Norman A. Smith, Co-Founder/Associate Executive Director, Project Freedom Inc., is a subject matter expert in inclusive Emergency Preparedness for people with disabilities, functional, and access needs
It is May! It is time for my annual rant as we near Hurricane Season.
“In the next decade, the probability of a major hurricane hitting the Northeast is one and a half to two times greater than in recent years. We are returning to the earlier decades where landfalls were more common,” said from Dr. William Gray, Emeritus Professor, Department of Atmospheric Science, Colorado State University.
That prediction came true five years ago with Hurricane/Super-Storm Sandy slamming into New Jersey. This year’s predictions by Colorado State University’s team, now headed by Dr. Philip J. Klotzbach, is for a “slightly above” average season for 2018. This is worrisome since last year’s initial prediction was for an “average” season.
This is the 35th year that the CSU hurricane research team has issued the Atlantic basin seasonal hurricane forecast. Recently, the Tropical Meteorology Project team has expanded to include Michael Bell, associate professor in the Department of Atmospheric Science. William Gray launched the report in 1984 and continued to be an author on them until his death in 2016.
Dr. Klotzbach’s team’s initial prediction is: A total of 14 named storms with seven hurricanes and three of them becoming major hurricanes.
Last year’s prediction was 12 named storms, six becoming hurricanes, and two reaching the major threshold.
The actual number for the 2017 season was 18 Tropical Depressions turning into 17 named storms; ten of these storms turned into hurricanes with six being “major” in power and scale. Remember Hurricanes Harvey and Maria?
The prediction also estimates the probabilities of at least one major hurricane making landfall:
For the Entire U.S. coastline – 62% (Last year it was 42%)
For the U.S. East Coast including Peninsula Florida – 39% (32% last year)
With this year’s prediction in mind, 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.
Severe Weather Preparedness for People with Disabilities—It is important to know in advance what steps you need to take to keep yourself and your family safe.
Do you know the best way to get emergency alerts and warnings? If you have a disability that affects your communication, identify the best ways for you to access emergency information in advance. What television stations in your area offer live captioning? Can you sign up for text, email, or telephone alerts through your municipality? Keep phones and communication devices charged, and always have a backup way of learning about emergencies. Some options for alerts and warnings are listed below.
Television stations with live captioning
Emergency Weather Radio (some can support strobe lights, bed shakers and text readouts)
Wireless Emergency Alerts – If you are in an area where the alerts are available and have a cell phone that is equipped to receive them, you may automatically receive a text message when an emergency alert is issued.
Smartphone applications – Many smartphone apps will provide text and audio weather alerts. You can set the locations and types of alerts you would like to receive.
Social Media – If social media is accessible for you, look for local emergency management agencies and news stations that also use social media to broadcast alerts and warnings. Save these organizations to your ‘favorites’ or begin ‘following’ them in advance.
Local warning systems – Many localities have emergency alert services that will provide alert information to you in a format of your choice. Most locations can send messages to email addresses, mobile phones (text or voice), landline phones, TTYs and Braille readers. Contact your local emergency management agency to learn what options may be available in your community.
Support network- Talk to trusted friends, family and neighbors and create a plan to notify each other of emergency information.
After determining how you will be notified of an emergency, put together an emergency plan and kit. Involve your friends, family, neighbors, support staff and anyone else that you trust to assist you. Determine how you will contact them in an emergency and what they can do to assist you. Think about where you will take shelter in your home if you need to. Also consider any services you need (personal care assistance services, dialysis services, etc.) and how you will access those services in an emergency. Talk to provider agencies about their emergency plans Learn more about preparing for severe weather at www.ready.gov/severe-weather.
This year will be the twelfth time in my life that I cast a vote for the governor of NJ. I remember back in 1973 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.
Yet last year I read an article from the Arizona Capital Times about people with disabilities voting, and it cited a report from the Research Alliance for Accessible Voting. The report said that people with disabilities voted at a lower rate than their able-bodied peers in the 2012 election. The rate was 56.9% in the able community vs 48.1% for people with disabilities. Our vote was 12% less than people who were able-bodied, and we wonder why some elected off do not pay attention to us!
The article also contained a quote from Phil Pangrazio, a person with a disability and the CEO of an Arizona-based center for independent living. Pangrazio said:
“With barely half of our community overall voting in any given election, it is critical that we each take our civic right – and our duty – seriously. Not voting may just be one of the most selfish and irresponsible acts a citizen could commit.”
I agree with Pangrazio—especially with what is happening in Washington and Trenton these days.
One of my heroes in the Disability Movement was Justin Dart. He is credited by many as the force behind the creation of the Americans with Disabilities Act. Dart’s take on people with disabilities voting was simple and succinct: “Vote as if your life dependent on it…because it does!”
Voting is a right that every citizen of this great country should exercise. People have died to gain that right. People have died to protect that right. People have died to exercise that right. We need to honor their ultimate sacrifice by voting, and there is no excuse for people with disabilities not to vote.
New Jersey will be holding its Seventh Annual Disability Pride Parade and Celebration in Trenton this month. The event is organized by the Alliance Center for Independent Living based in Edison, and I’m proud to have been a part of the parade since the beginning.
I have told this story many times, and the underlying philosophy remains important to emphasize each year. I have recruited people with disabilities to march in past parades. One year my neighbor sarcastically asked me: “Are you proud of that stutter of yours?” Since I’m always reminding him that he cannot see too well and that he is dangerous in a power-chair, his well-aimed barb is routine banter between people comfortable with their disabilities. His comment, however, started me thinking about the incongruity of pride and disability.
It is incongruous to take pride in not being able to do something. There must have been some onlookers at the parade in the past asking: What are these “broken-down people” with crutches and in wheelchairs doing marching around proclaiming their pride? How can they be proud when they can’t do anything for themselves?
Well, that is the point. Society’s view of people with disabilities can be so negative, so weakening, so smothering of spirit that overcoming that negativity can be empowering and something to be proud about.
As people with disabilities, we put up with so much crap imposed upon us by society, the government, the system, and the people in our lives that it is a wonder that any of us have the energy and initiative to be independent, productive, or active.
But we are independent, productive, active, and we need to own it and show our pride in what we do!
This applies to every person with a disability no matter what their situation. Our lives are a precarious “high-wire acts” of low income with under-funded supports that keep us more dependent than independent. One false step drops us into the abyss of institutional living to be trapped and robbed of personal initiative, independence, and dignity.
Yet every day we get up to perform on the “high wire” defying negative attitudes, preconceptions, prejudices, and fears. Some do it with drudgery. Some do it with gusto. Most people with disabilities live our lives somewhere in between. We do it every single day.
This is why we should have pride. This is why we need to display our pride publicly and loudly. This is why we celebrate our pride in ourselves and our community.
Norman A. Smith, Associate Executive Director – ProjectFreedom1@aol.com
Follow me on Twitter @normansmith02 Follow Project Freedom on Twitter @TheFreedomGuys “Like” us on Facebook.com/ProjectFreedomInc
This year will be the twelfth time in my life that I cast a vote for the governor of NJ. I remember back in 1973 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 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. 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.
Yet LAST YEAR I read an article FROM the Arizona Capital Times about people with disabilities voting, and it cited a report from the Research Alliance for Accessible Voting. The report said that people with disabilities voted at a lower rate than their able-bodied peers in the 2012 election. The rate was 56.9% in the able community vs 48.1% for people with disabilities. Our vote was 12% less than people who were able-bodied, and we wonder why some elected off do not pay attention to us!
The article also contained a quote from Phil Pangrazio, a person with a disability and the CEO of an Arizona-based center for independent living. Pangrazio said: “With barely half of our commu-nity overall voting in any given election, it is critical that we each take our civic right – and our duty – seriously. Not voting may just be one of the most selfish and irresponsible acts a citizen could commit.”
I agree with Pangrazio—especially with what is happening in Washington and Trenton these days. Nothing about us without us, right? Well, the decision process for our issues is moving ahead at all levels of government. We need to be involved! We need to be involved from the start by voting! 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 7!
Norman A. Smith, Associate Executive Director – ProjectFreedom1@aol.com
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.
We also celebrate the concept that each person has equality in the eyes of the law. Although many have tramped upon this basic concept throughout our history, its promise has survived thanks to the sacrifice, blood, sweat, and tears of many.
As we celebrate Independence Day, we need to remember what we are celebrating and why. We need to remember the sacrifices of those who have died for the concepts of independence, liberty, and freedom. We must also remember that the fight is not over for people with disabilities, and, indeed, remember that the fight is only beginning for many of us.
The promise has been slow in coming for people with disabilities, and for many of us, equality is still not here, is still a concept enjoyed by others, and is a promise that still needs to be kept.
The promise is a lofty one, yet for some people with disabilities the promise translates into more practical considerations: the freedom to make choices in their daily lives, to be responsible for their lives, and to be a contributing part of their community.
Freedom and independence are grand sounding words, but for some they mean the right to do simple tasks. Freedom and independence are empty and hollow words when a debate about the worthiness of the lives of people with disabilities is encouraged by silence in one of our nation’s oldest institutions of higher learning.
Expecting the promise of freedom to be kept without struggle and sacrifice is foolhardy. Again, 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 people with disabilities. The pictures below show the most recent participation through peaceful disobedience at our Nation’s Capitol.
So, while we celebrate what happened 241 years ago, let us remember for many of us with disabilities the struggle for freedom continues!
This is the unfortunate price we pay by being parents with disabilities. Before President Obama left office, the White House sponsored a conference on parenting with disabilities because more people with disabilities are paying that price nationally. The price can be minimal for some, higher for others, but well worth it to hear your son say “Happy Fathers’ Day, Dad!”
New Jersey will be holding its Seventh Annual Disability Pride Parade and Celebration in Trenton this month. The event is organized by the Alliance Center for Independent Living based in Edison, and I’m proud to have been a part of the parade since the beginning.