Austin’s Corner took a long break because of COVID-19. I bet this word has been on top of your vocabulary list. This pandemic has changed the world and continues to affect our lives—my first blog post was on February 21, 2020, and it’s only coming back now. Yes, the world and politics have changed. How is your life different due to COVID-19? Let’s discuss it.
One has to learn how to use their resources to the best of their abilities, which is difficult for me because I find it easier to help others than myself.
I am fuzzy about the time frame. Let’s say it was three or four months before the world closed down because of COVID-19, and my computer was acting up. As the stay-at-home orders began, this made Zoom a new skill for many of us to learn. Zoom made it possible to connect with family, friends and colleagues in real time. It was bizarre because most individuals were unaccustomed to the new technology and scrambled to learn how to communicate and still are. Unfortunately, my laptop would not participate in anything, including assisting me with my bills. I can write out checks, but I have trouble with legibility. I use a spreadsheet that I created.
Not having a working computer made me frustrated and more dependent on my attendant to do my household bills. You must record how much money you spend. It is part of life no matter your income source, and especially if you are low income, you need to prove what’s coming in and going out. Think for a moment if you need more assistance under the circumstances. Would it be fair to put extra work on your attendant if there was a way to do it yourself?
I have been working with Heightened Independence & Progress (hip) for a long time and Trish Carney called me to see how I was doing. She was able to assist me in applying to receive a new Chromebook through hip’s programs and in November 2021 my new computer was set up by hip’s assistive technology consultant. Now I can do my household bills as usual, attend Zoom meetings, and more.
On Wednesday nights, hip hosts hip’s Home Humpday Happenings on Zoom. It’s fun, we all get together to do arts and crafts or play Bingo. Thanks to hip and my new Chromebook, this is how I have been passing my time.
I would like to hear your thoughts on dealing with this pandemic and what changes would benefit you. Have you gone online more? Do you feel your needs were met during this pandemic?
I am Austin Epstein, past President and Vice President of the Board of Trustees at DIAL Center for Independent Living. Brian Fitzgibbons, President/CEO of Heightened Independence & Progress Center for Independent Living (hip) has given me the great opportunity to do a blog for hip’s website. I have decided to call it “Austin’s Corner.” History is good, as it puts a lot of things in focus. I would like to spend time on the present. How can we communicate all the knowledge of the past 40 years and where we hope to go? We have been so busy trying to prove that these services were necessary that we forgot why this information was needed and how to disseminate it sensibly. Are we there yet? I am not sure.
A brief history of Independent Living Centers (CILs): hip and DIAL are in their 40th years of operation in New Jersey and all other CILs in NJ were established later.hip and DIAL were the first to receive federal funding in the state. The centers were originally supported by the Division of Vocational Rehabilitation Services (DVRS) and the Commission for the Blind & Visually Impaired (CBVI). The two agencies pooled their resources to help their clients with disabilities became more independent. It was a novel approach – I should know, I was there.
We are in the era of 24/7 access to the web and Facebook. Many agencies have their own websites and Facebook pages. Where do you go for your information? Do you go online or are you more comfortable speaking to knowledgeable people on the other end of the phone?
We’ve recently had a vacancy in the position of Director of the Bergen County Division of Disability Services. If you were looking to hire a new director, what qualities and experience would you want this person to have and why?
My mother had given my life but Heightened Independence and Progress (hip) gave my life purpose and direction. I was born with cerebral palsy and although I earned a college degree, I thought that employment was impossible. All I could see were my limitations rather than focusing on all the things that learned along the way.
But that all changed in 1989 when I was volunteering at United Cerebral Palsy Center (UCP) of Hudson County, I was asked to attend a meeting concerning the creation of a new organization designed to help people with disabilities integrate into the community. Already established in Bergan County, Hudson hip’s mission was to introduce the Independent Movement to Hudson County.
For a while I divided my time between the Center and hip, but soon I began spending more time at this new organization. It was the first time in my life that I saw people with disabilities taking charge of their own lives. They worked, had active social lives and lived quite independently.
At the time I was married, but unfortunately, it did not give me the freedom I desired. When I was married, I saw myself as a helpless creature having no choice but to rely on a man to support me. (Please note my ex-husband was a good man. The fault of our break-up was entirely mine.) However, getting involved with hip, made me realize that I could have goals and a career beyond the duties of being a wife and homemaker.
In the beginning there were only two of us working at Hudson hip. Bob Greenberg was the first part-time coordinator of the office and he suggested that I spend more time volunteering for hip. At that time hip was housed in the office of the Hudson County branch of the NJ Division of Vocational Rehabilitation Services (DVRS). Bob thought that by volunteering the rehabilitation counselors could see my skills, which perhaps, would lead them to recommend me for employment. This made sense so I started to work on office tasks like filing, coordinating schedules and mailings It may sound silly but in those days those days I was even afraid to use the copier.
Soon Bob left for a full time job and Maryanne Vacca replaced him. Maryanne was totally blind so I became her reader. Much to my surprise she learned to understand my speech which, up until then I thought unrecognizable by anyone but family and close friends. hip helped me find a voice which up to that point had been silenced by fear. Those who know me may find this strange since I’m known for speaking my mind, however, there was a small voice inside me that wondered whether people were really understanding me. It was one of the first of many things that my employment at Hudson hip did for me. It did what Centers for independent Living are supposed to do; start one’s journey toward empowerment.
Eventually, MaryAnn left to marry and have a child and Kathy Wood took over to become coordinator of Hudson hip. It was still the two of us and since Kathy is visually impaired I was still a reader. But now there were other tasks to do that required hand coordination which was challenging for me. Kathy didn’t seem to mind and soon neither did I; all that mattered was that we got the job done.
When Kathy went on medical leave I was left in charge of the office leaving me responsible for everything including answering the telephone. Admittedly answering the phone is one of my least favorite things to do, however, the call I answered led to the start of a lifelong friendship with Marily Gonzalez who joined the staff. She would later assume her current role as the Executive Director of the Hudson Branch.
Our office family was completed by Maria Smith who was hired as an independent living specialist with a heavy emphasis on clerical work. My cerebral palsy affects my motor skills and prevents me from doing tasks which require fine hand control so Maria and I worked as a team with her take my dictation when writing by hand or typing became difficult for me.
Though the years, my job evolved into writing flyers, press releases, and a quarterly column for the newsletter. I would also go to health fairs and conferences on behalf of hip with Marily or Cathy. I was a member of the hip team and I got the chance to offer my opinions on disability issues and develop strategies for our consumers. Our workplace was filled with friendship, laughter and good will as we worked to remove barriers that prevent people from leading independent lives.
On one occasion Marily had been assigned to organize a conference with an emphasis on issues facing the Hispanic/Latino community. She was given the task of planning the meal and asked me for some advice about the menu. I emphasized that the meal should not include rice since many people find it difficult to manage. I still smile when I recall the panic in Marily’s eyes as she rushed from the podium to apologize to me because the committee overruled her suggestion and rice was the main attraction. It was just one of those things but Marily was concerned that I’d be upset that my advice went unheeded.
While a paycheck is important work gives us so much more. It enhances one’s self-esteem and self-worth and enables people to make social contacts that can sustain us for a lifetime. Even though technology has changed the workplace in many ways by leveling the field for people with disabilities it’s the relationships that make the difference. Work is who we are and how we are viewed by others. It completes the life experience and I’m happy that I got to experience that in a place like hip.
What is the first thing that comes to mind when you hear the word special? Do you instantly think of someone you love who is very special to you? Or, of someone who told you that you were very special? Upon hearing the word, we often relate it to love and admiration, sadly that isn’t always the case.
This past April, Netflix released “Special”; a TV show based on the life of the actor and writer Ryan O’Connell who has Cerebral Palsy. Cerebral Palsy (CP) is a neurological disorder that is caused before, during or after birth, which can affect muscle movements, motor skills, and even speech. Throughout the show, viewers can appreciate how much effort Ryan puts into concealing his disability to avoid being treated differently. Denying his disability wasn’t intentional until he began noticing how accepting others were of his limp assuming it was the result of an accident rather than CP. It’s sad to think that the way a person maneuvers through life is more important than who he is as a person. What should matter is the type of person that he is on the inside. Having a special way of walking doesn’t take away from the awesome person that he is.
If you ask me, proving to others that you’re more than your disability can be pretty exhausting. Throughout the eight episodes of the series, Ryan tried endlessly to make others see that there was more to him than meets the eyes. Even though he walks differently, he had the same wants and needs as any gay individual. His sexual preference was never an issue, quite the opposite. So why be ashamed of your disability and not of your sexuality when both are part of the minority? The problem is that society has made disability such a taboo topic that it is easier to pretend you are not disabled, instead of having to work endlessly to show the world that you are more than your condition. That is what a disability is a condition, that’s it!
Sadly, society has put such a great emphasis for us to “fit in” that we end up doing everything to appear less different or in this case special. Since birth we were taught to behave and act a certain way to blend-in and not be considered an outcast. Instead of celebrating self-love and self-acceptance we’ve chosen to suppress that part of our lives. How can we learn to love ourselves just the way we are if we learned at a very young age that it’s wrong to be different? We cannot, it’s impossible. We were taught to be closed-minded and to disregard anything that doesn’t make sense, rather than taking the time to get familiar with it. Don’t consider someone special just because they look or act differently; instead, take the time to really get to know them. By allowing yourself this opportunity you will see how special they are as individuals with unique qualities.