hipcil Newsletter Winter Spring 2022

From the Desk of the President:

As I write this, I’m reluctant to be overly optimistic but it seems like some of the COVID-19 restrictions will be lifted in time for Spring and I for one am ready to greet the world and open the hip offices to the public. While I have been on no less than 100 Zoom meetings, I am ready to see my colleagues in person even if the lighting is not as good as in my breakfast nook.

One of the things that I have heard in many circles is that the ability to attend a virtual meeting eliminated the problems with arranging transportation and made access much more friendly. The same thing can be said for the many accommodations we have made in the workplace; things became easier for people with disabilities to participate.

As things ease up it is my hope that the lessons learned from the use of technology will carry forward to make access to services and employment more suitable and equitable for people with differing abilities and the workforce can benefit from this talent pool.

And speaking of talent, I hope that you enjoy our featured articles that have been written by our consumers. We want every voice to be heard.

Sincerely,

Brian

The Calendar Raffle is Back – and Better Than Ever!

The Calendar Raffle is back for the summer at hip! It’s time to take a chance to win money and support our agency at the same time. The “In It to Win It” Calendar Raffle is coming up and the fun will start before you know it – and all for $25 a ticket!

During June, July and August, five winning tickets will be selected at random each week. You will have 66 different chances to win a cash prize – with just one $25 ticket! Best of all, the more tickets you buy the more chances you have to win!

A specific cash prize is designated for each day marked on the calendar. And here’s the best part: if you win, your ticket is re-entered into the raffle for more chances to win again! Several people can share a $25 ticket as long as all their names are included on the reply form. After

the winners receive their prizes, the remaining proceeds of the Calendar Raffle will support the Independent Living services and advocacy efforts hip provides to the community.

How to get into the game? You may have received a calendar raffle ticket in the mail. If not, or to obtain more, call or email Maria Valentin at 201-996-9100 ext. 18 or mvalentin@hipcil.org with the subject line Calendar Raffle. We will be very happy to send as many tickets as you’d like right out to you. The grand prize is $250!

Don’t wait – buy your ticket(s) now! The reply portion of your ticket must be received by hip by Tuesday, May 31st. Names of winning ticket holders will be posted every Thursday on our website, www.hipcil.org, by 10 a.m. Winners will also be notified by mail.

Lots of luck! We hope you have a winning ticket and a fun and safe summer!

Sharing Life Experiences from Our hip Friends

We’re excited to share the viewpoints of several of our friends in this issue of hipNews! It’s so important to learn from each other’s experiences and how we can work together to thrive in our community.

Read all 5 informative and enlightening essays on pages 2-4 of this issue of hipNews.

1. Learn New Skills – Gain A New View of the World – By Morgan Neumann
2. Disability Etiquette – By Hanneh J. Kalyoussef, MA
3. What is it Like Living with Autism? – By Christopher C. Gagliardi
4. Masks and Communication – By Austin Epstein
5. Loss of Identity – By Marianne Valls

Learn New Skills – Gain A New View of the World

By Morgan Neumann

As someone who was born with Cerebral Palsy, I have been both the recipient of services and a friend, peer, supporter, and advocate to individuals with a wide range of physical and cognitive challenges. Each one of us has unique circumstances but face many mutual barriers of exclusion and lack of access in a variety of forms. Disability is part of the human condition and affects everyone differently. Sometimes, our disabilities hide our abilities, even to ourselves.

Personally, my Cerebral Palsy is often the first thing a stranger will notice when they meet me. Unfortunately, this prejudgment is not something that is unique to my situation. Many others face judgements or are denied support because of invisible disabilities that are misunderstood. While equipping ourselves with education won’t solve all our problems, it can help in many

ways. For me, I hope to use my graduate degree to become a professional disability advocate and improve accessibility, equality, opportunity, and dignity of persons with disabilities. I know disabled people can enrich society with limitless contributions.

I am about to start my second semester in the MA Disability Studies program at CUNY. The rigor of the program has challenged me much more than I had expected. Remote learning is hard for many, but without technological support and academic support many get while in the K-12 system, it can be almost impossible for people with disabilities. On the other hand, I love online classes for the doors they open for me. Commuting to NYC for class everyday would never be possible logistically nor would my chronic pain and compromised immune system be able to handle it. Regardless of these struggles, I believe the best outcomes for those of us with disabilities come from an interdisciplinary support system constructed with effective communication interactions in barrier free environments.

Online learning also allows talented professors who are literally anywhere to share their knowledge with us. Last semester my favorite professor was in Tennessee and this semester I have an amazing professor who lives in Northern California. They are experts in the disability field and have experiences that so many of us beyond their geographic reach are benefiting from. Even more surprising to me are my fellow students. I am just 24 and just recently graduated, but many of my classmates are professional teachers, therapists, social workers, and administrators. Many of them also have disabilities or have children with disabilities. This provides perspective and inspiration for me. I realize so much more now that if I can better understand those with different disabilities, those without disabilities and especially those who dedicate their lives to people with disabilities, I can improve my interactions with all people.

As an undergraduate Communications major, I learned written words often interfere with communication just as the label of disabled fails to describe capabilities or potential of a person. The strength of my new academic adventure gives me hope. Knowing that the program keeps growing because the demand to study disabilities is strong, makes me confident our society will benefit. Inclusive environments supplemented by virtual communication technology and assistive technology tools are empowering.

Disability Etiquette

By Hanneh J. Kalyoussef, MA

For over 30 years, I have been legally blind. I learned to “survive” as a disabled person through high school, college work and even through obtaining a Masters degree. A reoccurring observation that I have ‘seen’ in my 30 years as a disabled person is the lack of education on disability. More specifically a lack of communications in educating everyone about disabilities.

We are a society of, out of sight, out of mind thinking. Why should I know about disabilities how to help those who have them if I, or a family member, is not directly affected? I have had

people call my cane a stick. I have had people pull me across the street in an effort to help me cross. I have had cars cross the street in front of me within a foot of the tip of my cane because they didn’t want to miss the light. I have had workplaces who fired me when finding out I am visually impaired.

These experiences were very frustrating and unfortunately will continue to happen because people are not educated in simple disability etiquette. For example, not speaking loudly to a visually impaired person. These things may be more common sense for those who are, work and support the disabled community but what about the rest? How can educate others on how to communicate respectfully? How do we even get them to care?

At the age of 13, I left the world I knew, the world of reading, the world of seeing everything clearly, the world of being “normal.” I have faced many prejudices and hardships primarily because the people I dealt with did not understand what being visually impaired meant. No, I was doing the job just fine – they assumed with the new knowledge I could not do the job I have been doing. Sounds stupid, right?

We need to teach people that it is not just sighted or not sighted: the visual spectrum is so large! My high school guidance counselor was shocked when I asked him about colleges. That’s an example of not being educated. I used to call it ignorance, but when you’ve never been taught how to communicate with a person who is different, it’s not ignorance, it’s just a lack of education.

This goes for all disabilities, but I can only speak about my personal experiences. I believe that if the others are made aware, people will behave differently, think differently. I suggest companies have a disability education training. More effectively, we must start educating children in schools. We need to begin with younger children who may encounter in their years of schooling disabled classmates. A simple lesson can go a long way.

I realize it is easier said than done. I know we can make a difference if everyone makes a small effort. I am always willing to speak in order to spread the awareness. A little effort can go a long way.

What is it Like Living with Autism?

By Christopher C. Gagliardi

What is it like to be born with Autism or even LIVING with it?

To me that’s a very hard question to answer. I had been trying for weeks and weeks to answer it. I guess when you think about it, there are many things that come to my mind that I can feel about living with Autism. For starters, being born with it is like having no sense of time and also trying to understand what was going on in the world around me. As a person with it, you seem like you do not know people and you cannot tell who is a person, an animal or even a piece of furniture. When you want to say something, it is hard to find the exact words or feelings to describe, even when you are sad or angry or hurt. You have no sense of feeling pain of any kind. That is what I felt like, having the frustration of not being able to express myself, connecting with anything or anyone.

The mere fact that there were people in my life who knew that I had the potential of anything let alone a future that helped me connect with stuff, people and things WAS and still is in fact a living testament to their courage and determination to see me thrive. The tears, sweat, and toil by teachers who refuse to hear the word “surrender” and my mother who wouldn’t let them anyway. The community that I grew up in, once I started to connect with the outside real world,

embraced me like their son or grandson, etc. My fortune is that by them doing that, I haven’t given up on myself yet. So that what it is living and being Autistic.

Without the organization of Heightened Independence and Progress (hip) and the adventures that they have blessed me with, I would never have known the most adventurous part of the word from fishing, to singing, to going to a baseball game, karate, etc. and the wonderful people who always shared their love with me.

What are my dreams for the future? Well, that is the next chapter. Someone once asked a famous explorer this question: “Why do you climb the mountain?” His answer was: “Because it’s there!” The greatest mountain that has yet to be conquered for people with special needs…is space! I would like to, if only briefly, “slip the surely bonds of earth and touch the sky on laughter’s silver wings” by going in the Blue Origin rocket and being able to say that I have conquered the greatest mountain of them all…being the first person with special needs, especially with Autism…to go into space! That is something that I would like to do and set the stage for others to be inspired!

Masks and Communication

By Austin Epstein

Anyone who knows me knows I am a coffee drinker, both hot and iced coffee. There is a Dunkin Donuts within walking distance of my apartment building. I frequent it often and I like the menu and the staff, as they are typically young adults trying to work and make some money.

Dunkin Donuts is known for self-service. There are a few tables you can sit and eat, or like many people, take your order with you. I have speech difficulty at times which makes it hard to

understand. I use a motorized wheelchair and use my left hand to drive it. I need some assistance getting my order to the table or opening the door when I take my order to go.

Once the COVID-19 pandemic began, everything changed, and the everyone had to wear masks to protect themselves and others. Now I had to figure out how to communicate with a mask on, as my speech difficulties are not going away.

My solution was to use Google. One of Google’s add on’s is Google Keep, which is a note-taking app where I can store my coffee order, letting the staff know anything I’ll need assistance with, etc. The notes I create are easy to find on my cell with the needed information for that transaction.

I use Google Keep for two places, Dunkin Donuts and Walgreens. I plan in advance and write everything down in the app – for example, I use a straw to drink and make sure to include that in my order. I usually think of it at the last minute before walking out so now I don’t have to worry that I’ll forget.

Sometimes you just have to think outside of the box and make adjustments that work for you.

hip Thanks…

hip receives many contributions from the individuals and the community throughout the year. We thank the following for their recent exceptional generosity:

River Edge Lions

Bergenfield Lions

Mike and Marie Cook

The Kaplan Foundation

Lottie Esteban

First Presbyterian Church of Hackensack

Special Thanks to the parishioners of St. Peter the Apostle Church in River Edge and participants of the Bergen Volunteers All Wrapped Up program for their amazing gift-giving generosity to many of our consumers this past holiday season.

Do you need a COVID-19 vaccine or booster?

We’re happy to help you schedule an appointment and arrange transportation if needed. Please call the Bergen or Hudson office for more information.

Loss of Identity

By Marianne Valls

As my aide, Rosa, fed me lunch, I made a startling discovery about myself. The realization hit me that I am out of control. Throughout my life, gaining control was always something I worked hard to attain. However, because of my cerebral palsy, my body did not cooperate in achieving this goal. Despite my limitations, I reached the point in my life where I gained control. I was finally free!

Then unfortunately, I contracted COVID-19. Combined with my cerebral palsy, my limitations have increased. I can no longer walk, my speech is labored and, at times, quite unintelligible. My hard-earned freedom appeared to be lost!

The system of “hurt and peck” of typing that I used all my life, has become more difficult and frustrating. Typing is a necessary to a writer. I wondered if this end of my short- lived career. I feel I have lost all control. Will I even get it back?

In the late eighties, my life was a mess. According to my beloved counselor, I was a late bloomer. Unfortunately, she died before I came into my own.

As the eighties ended, my life appeared to be on the uptake. I wanted out of an unhappy marriage. But I had no money and no work experience. All I had was a college degree. Unfortunately, the degree combined with my disability didn’t help to get me anywhere.

I decided to volunteer in an effort to gain some work experience. My first job was at my local cerebral palsy center. It worked! I became volunteer coordinator. I’ll admit I wasn’t very good at my job.

But it was a new decade, and the American with Disabilities Act had yet to be passed. So my work had gradually turned into advocacy. Here, I was truly in my element. As a writer, I like to express my opinion. I wrote to Congress promoting the civil law that would give people with disabilities a barrier-free society.

My next job was for an organization called hip. hip is an Independent Living Center for people with disabilities. It was my final search for independence. Eventually at hip, I had a chance to develop my writing skills. I was surrounded by people with disabilities. I thought I had reached the point of accepting my disability.

Now, after COVID-19, I wonder if l am back to square one. Will I ever walk again? I don’t know why that upsets me. I have friends who have use wheelchairs. Indeed, the love of my life used a scooter. However, he died a long time ago, and to tell the truth I feel sorry for myself.

I’m wondering, did I always feel self-pity or is a new phenomenon? There’s no doubt about it, I am lost. However, I sure I am not alone. We are a lost nation. COVID-19 has done this to us. We are like children, unsure of the changes that lie ahead. Many of us are stripped of our identity and wonder if we’ll ever get ourselves back. One thing that I do know is that things will be different, but we will find new ways to communicate.

Spring Word Scramble Answers

1. UMBRELLA
2. BUTTERFLIES
3. FLOWERS
4. SUNNY
5. TULIPS
6. SUNSHINE
7. BLOSSOM
8. RAINBOW
9. PICNIC
10.  GARDEN

Welcome to hip, Jesse!

hip recently welcomed a new staff member! Read further to get to know Jesse and how he is helping make hip an even greater asset for our consumers.

Jesse Schwartzman joined the Bergen hip staff in January as a Community Advocate. He is a Bergen County resident, former legal assistant and former community organizer. He earned a BA in Political Science with Double Minors in Psychology & Public Administration from Montclair State University.

Jesse is looking forward to making connections with elected officials and individuals with disabilities. He has a goal to serve as a peer mentor for college students in Bergen and Hudson counties who are transitioning from school into the “real world.” Jesse will be putting his organizing skills to good use by working with advocates in the disability community so all can live their best lives independently. Jesse works three jobs so in his somewhat free time he likes to catch up on his favorite Netflix shows, read books about disability advocates and see friends and family.

We Welcome the Following New and Renewing Members of hip for 2022!

Karen Acker

Natalie Alave

Cecelia Aluotto

Peter Ambrose

Deborah Baumann-Dasilva

Annie Been*

Joanna Benthall

Darrell & Tamiko Bethea*

Christine Black

Paula Bloom

Jerry Bojko

Gail Braun

Kerry Brennan

Mario Brusco

George & Mildred Bullerdick

Jonathan Burack

Peter Cafone

Brenda, Jerry & Daniel Calabrese

Mary Carney

Tom & Susan Carney

Trish Carney*

Kay Chase*

Celia Chave

Ciccone Family

Lillian Ciufo**

Barbara B. Comerford*

Elizabeth Cohen

Michael & Marie Cook*

Sonia Cordova-Chumpitaz

Jim & Jean Csaposs*

Mary Culver

Howard Cutler

Joan D’Angelo

Carol Dass*

Jarrett Dean

J. Robert Duffy*

Michael Delgado

Martha DeYoung

Anthony Dinaro

James F. Dougherty

Barbara Dublin*

Dennis Dusevic

Patricia & Dave Ebel*

Austin Epstei

Lottie Esteban*

Oria Estrada

Barbara Farrell

Francesca Farrell

William & Stella Fellinger*

Karen-Mae Ferolino

Betty Fetzer*

Brian Fitzgibbons*

Michael Fondacaro

Gerry Galvin

Laurie C. Galvin

Dorothy Genoni

Andy & Linda Goff

Alan Gold

Marily Gonzalez

Patricia Guy

Mary Jo Hackett

Alice Hamburg

Harries Family

Alfred Harvey

Elizabeth (Bojane) Heap

Eusebia E. Heckel

Rhea Hess

Henry Hof, III

Rick Hodgman*

Linda Horvath

Kennel Hyppolite

Timothy Kerr

Joan F. Klug*

John Koch*

Lorena & Ana Kos

Zoraida Krell

Diana LaForge*

Jean Laraia

Virginia L. Laughlin

Louise Lee

Susan Lee

Marion Levine

Chili Li*

Gloria Lieberstein*

Judith Liebman

Roy Lippin*

Lisa & Jorge Loza

Margaret Lusch

Joyce & Leonard Malech*

Mariana Martinez

Joan Martorella

Gracie & Sophie McCain

Gail Frazier McFadden

Joseph D. McGovern

Brian McGrath

McMahon Family

Ann Melone*

Dr. Frances Meyer*

Joseph Molee

John Mulholland

Bob & Martha Mulligan

Madeline Murray

Morgan Neumann

Yin Ni

Hyacinthe Nkurunziza

Mario & Jorge Olivares

Gloria Ortiz

Jennyfer Paniagua

Chris Paraskevacos

Alejandro Paredes

Richard Pietrzak

Marianne Pigocelli*

David Popiel

Jennifer Preciado

Mayra Preciado

Anne Marie Predergast

Noel Prussack

Joe Revello

Cruz Rodriguez

Richard Rosencrans

Ryan Roy

Richard & Beverly Ryan*

Mary Sanfilippo

Marie Sawyer

Jesse Schwartzman

Stefanie Seid

Doug Simon

Lynn Smith

Michael Smith*

Donn Slonim**

Dana Solomon

Jeffrey St. Germain & Family*

John Stanik*

Debra Tester

Mary Thornton

Janet Tolliver

Thomas Tuzzio

Angela Tzakis

Danny Vaca

Angelissa Vazquez

Carol Viceconte*

Ron Vida

Ann Burton Walsh*

Webster-Cennarazzo, Philip & Linda*

Jean & Richard Wechsler

Willet, Janice*

Virginia Flynn-Williams

Warren Williams

Sharon Womack

Allen & Barbara Young

Anthony & Mary Yorio*

Alan Zimmerman

Maureen Zurlo

*Life Member

** Deceased

You can become a member of hip! For a membership form visit our website at www.hipcil.org/membership or call one of our offices!

Thank You All

for your phone calls, emails, and cards filled with heartwarming messages, notes of appreciation and good luck wishes as well as your gifts and contributions to hip in my honor as I retired. I have enjoyed my association with you over the years and will always remember you fondly as I reflect on my career at hip. I wish all the best to all of you!

Trish Carney

We Mourn…

Our hip family lost the following people in recent months:

Don Perlman, longtime hip member, friend and volunteer. Don was a familiar, friendly face in the Bergen hip office as he helped out with everyone’s computers and worked to keep the braille embosser in good working order. A good friend of Eileen Goff’s, Don was part of hip longer than most of us can remember.

Lillian Ciufo, longtime hip Board member and friend. Lillian was a dedicated member of the hip Board of Trustees for more than a quarter of a century, from 1991 to 2017. As our Fundraiser Extraordinaire, Lillian aligned hip with numerous new and unique sources of income which enabled our Center for Independent Living to become a vibrant organization for people with all disabilities. Following the untimely death of her only daughter in 2000, she directed that all memorial contributions be sent to hip, which resulted in the establishment of Laura’s

Legacy. This fund, which is administered by hip, provides financial assistance to individuals and families when one-time support can make a difference in their lives and no other funding is available.

Both Don and Lillian will be very missed.

Calendar of Events

BOOK CLUB

Virtual Book Club Conference Call – April 22, May 20, June 17

AVL SUPPORT GROUP MEETINGS

Secaucus – 10am -12pm
April 14, 21, 28 (self-defense classes and peer meetings)
May 5, June 2
North Arlington – 12 – 2pm
May 10 (self-defense class), June 14
Jersey City
April 28 12-1pm via Zoom, May 26 12pm – TBA, June 23 12pm – TBA
Washington Township/Fort Lee – 10am
Every Wednesday Via Conference Call

TELEPHONE SUPPORT GROUPS

Young Adult Peer Group Conference Call – 2pm
Ages 18 – 30
April 15 via Zoom, May 20, June 17
Older Adult Peer Group Conference Call – 7pm Via Zoom
Ages 31 – 50
April 14, May 18, June 16
Please call the hip Office to confirm that the meetings will take place

Holiday Party Zoom – December 10 at 7pm
Virtual Book Club Conference Call – December 17

hip Offers Innovative Programs to Meet the Independent Living Needs of People with Disabilities in Bergen and Hudson Counties and Beyond”>hip Offers Innovative Programs to Meet the Independent Living Needs of People with Disabilities in Bergen and Hudson Counties and Beyond

Founded in 1980, Heightened Independence & Progress (hip) is observing 41 years of service. hip not only continues to provide vital assistance through information, referral, advocacy, and peer support, but also offers a wide variety of programs to people with all types of disabilities in Bergen and Hudson Counties. Some programs have statewide, even national impact. The following is a summary of hip programs.

Adjustment to Vision Loss coordinates peer support groups. Contact: Trisha Ebel (Bergen)

Braille by Multimedia Transcription Service (MTS) transcribes textbooks and other materials into Braille. Contact: Jayne Jacobs (Bergen)

Community Advocacy and Outreach Program seeks to promote full inclusion through advocacy, education and legislation. Contact: Hudson Staff or Bergen Staff

Comprehensive Independent Living Support (CILS) provides care management assistance to residents of Hudson County to remain in the community. Contact: Hudson Staff

Division of Developmental Disabilities Support Coordination Program assists individuals from Bergen and Hudson Counties to discover their full potential. Contact: Brian Fitzgibbons (Bergen), Natalie Alave (Hudson)

Empowering Women Support Group. Contact: Nicole Clark (Bergen)

Hispanic Outreach Program directs Independent Living services to individuals of Hispanic origin, in English and Spanish. Contact: Maria Valentin (Bergen) or Hudson Staff (Hudson)

Youth Transition Case Management assists high school students to plan for their future and for employment. Contact: Jenny Paniagua (Hudson)

Modification Access Project (MAP) assists with funding for barrier-free home renovation projects from concept to completion. Contact: Maria Valentin (Bergen)

Our New Journey provides financial and practical help to families newly impacted by the onset of illness or disability. Contact: Anne Ciavaglia McMahon (201-288-2867)

Polio Network of New Jersey – The Ruprecht Fund. hip administers this fund for PNNJ to help polio survivors in New Jersey finance necessary products and services. Contact: Maria Valentin (Bergen)

Senior and Caregiver Assistance Program provides care management to individuals over the age of 60 and/or adult family caregivers. Contact: Care Management Staff (Bergen)

Special Assistance for Independent Living (SAIL) provides funding to Hudson County residents for assistive devices or barrierfree home renovation projects. Contact: Natalie Alave (Hudson)

Special Needs Assistance Program (SNAP) provides funding and facilitates acquisition of services and adaptive devices such as wheelchairs, bathroom safety equipment, hearing aids and more. Contact: Maria Valentin (Bergen)

Support for Independent Living (SIL) provides ongoing care management services through assessment, linkage, and coordination for people with disabilities (18-59). Contact: Tamara Clark (Bergen)

Traumatic Brain Injury (TBI) is a state-funded case management program for New Jersey residents who have survived an acquired brain injury, for services and supports they need to live in the community. Contact: Shoshana Stubin (Bergen)