Article Press Release | Edward Janus | Disability Advocate and Activist

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Newspaper Article Published and Extracted From:
Northlake Herald-Journal. A Pioneer Press Publication. IL. 1999

Member of the Chicago Sun-Times News Group.

Northlake Herald-Journal
Dad, daughter seek hope after tragedy
BY JENNIFER GIUSTINO
STAFF WRITER
July 28, 1999

Dad, daughter seek hope after tragedy.

It is a telephone call that is easily a person’s worst nightmare.

On Saturday morning, July 3, Edward Janus was sitting with his 8-year-old daughter in his home waiting for his wife to return when his phone rang. Charlene, Edward’s wife of 10 years, and their daughter Cheralyn, had plans to visit Charlene’s mother in Georgetown, Ill.

But the trip was never to be.

After a telephone call from an employee at Firestone, where Charlene was having her car serviced for the anticipated family visit, Edward became nervous when he learned his wife had been involved in an accident.

A second telephone call from an official at Gottlieb Memorial Hospital in Melrose Park confirmed the incident was indeed true.

“He said, ‘Mr. Janus, your wife has been involved in an accident. We need to see you and your daughter right away,” Edward remembered. “I asked him what happened and all he said was, ‘We need to see you. All I can say is it is not good.’ I guess they didn’t want to tell me over the phone.”

Charlene, due to turn 53 Aug. 15, had been pronounced dead on arrival at the hospital.

Struck while walking across the 2600 block of Mannheim Road just after 8 a.m., Charlene was only steps away from safety.

A car driven by Agapito Arriaga, 74, of Northlake, was heading northbound in the center lane, according to police reports, and hit Charlene with the right passenger side of his vehicle as it traveled at 45 miles per hour.

But for Edward, getting to the hospital to see his wife was not going to be an easy feat.

Born severely hearing impaired and with cerebral palsy, Edward is also permanently confined to a wheelchair.

While a neighbor volunteered to drive him, a squad from the Cook County Sheriff’s Department eventually picked up Edward and his young Cheralyn and immediately brought them to the emergency room.

“The doctor told me, ‘Your wife didn’t have a chance. She didn’t suffer. She was dead on arrival,’ ” he said. “ I just started bawling.”

'Donates organs'

Meanwhile, their only child went to her mother’s side.

“Cheralyn is a very brave little girl,” he said, smiling as fathers do when speaking proudly of their daughters. “She was standing there looking at her mother and rubbing her mother’s arm. She took her mother’s purse ... brave little kid.”

But the love and courage expressed so sweetly did not end.

Asked by the doctor whether the family wished to donate vital organs, Edward said he had no problem with the idea, but that he wished to consult with his daughter.

Cheralyn agreed without any reservations.

Her mother’s bone tissue, a heart valve, and a piece of her eye were harvested for donation so that potentially another person or several other people may have a better quality of life.

So far, Edward and Cheralyn’s decision has helped at least two people. One man from Elmwood Park and one man from Chicago have been given the gift of sight following a successful corneal transplantation, according to the Illinois Eye Bank.

But, as if that was not enough, Edward did something many may find unthinkable.

The next morning, he made and answered calls from family and friends. One call he made embodied not only his spirit of generosity, but his spirit of compassion.

'Calls driver'

Edward called the gentleman who accidentally killed his wife.

While Arriaga was “not home,” he was able to speak with his wife.

“I said, ‘I am the husband of the woman your husband had the accident with. I don’t hold anything against your husband. I'm sure you and your husband are both devastated. He has to live the rest of his life knowing that he killed somebody,’ ” Edward said, recalling the Sunday morning conversation. “ If he would like to talk to me, maybe we could both feel better about it — maybe we could both heal together.”

With complete sincerity, Edward said he called Arriaga to offer forgiveness because it was something he “had to do” in his heart.

“If I were to ever see that man face to face, I would say, ‘Sorry.’ It was an accident. I'm sure that he was not driving that car trying to kill someone. I believe he must feel very bad,” Edward said.

While it has been nearly a month since Edward has buried his wife, the family’s spirit remains intact.

“I always thought that God would not give me something I couldn’t handle,” he said. “Right now things seem tough, but I have gone through disabilities. I have had a lot of obstacles in my life and I have always pulled through.”

Hopefully, his optimism will succeed his family’s tragic loss.

“Everyone used the same word to describe her: ‘Sweet,’ they all said,” Edward remembered and then offered more sentiments. “She was very sharp. She was a tutor at Triton College for their literacy program (Access to Literacy). Charlene was a very simple and a very down to earth woman. She didn’t wear fancy clothes. She had learned to do without those things. I will miss her very much.”

Charlene will not only be missed as a wife, a mother, and a friend. Her financial contribution was integral to the family’s financial stability.

As Edward put it, Charlene was also the “bread-winner” in the family and without her income, Edward and Cheralyn have only the monthly Social Security (disability) checks Edward receives from the years he was able to work at Bally Manufacturing, where he met his beloved wife.

One member close to the family said even with Charlene’s wages from Albert H. Wohler’s & Co. in Des Plaines, where she worked for 10 years as a personal computer operator in the applications department, the family pretty much lived month to month.

And now, with only Edward’s federal disability check coming in to pay the mortgage, utilities, and the growing needs of young Cheralyn, the family’s faith will soon be further tested.

“I will not be able to provide for my daughter the way her mother did, but I am going to try,” said Edward. “I have my driver’s license, but I cannot get into and out of the car like I was able to before when I was on crutches. I can drive with hand controls, but once I am out of the chair, who is going to put the chair in the trunk? Who is going to get it out of the trunk for me?

“I hope to get a van some day with a lift and then I could just go up, and then let myself in and drive,” he said. “I have some brochures, but they’re expensive.”

While driving his daughter to school one day might be a dream to fulfill down the road, it is not as immediate as some of his goals. He would like to get some type of live-in assistance to stay nights with the family, when solving emergencies tends to be trickier. Other tasks most people take for granted, such as grocery shopping, buying school clothes and maintaining the home, are also some of his concerns.

As well, Edward wants to send Cheralyn to college one day. She has dreams too and wants to be a veterinarian, he said.

In the meantime, Edward and Cheralyn will take each day as it comes, undoubtedly embracing life and one another.

While technically, the Janus family’s postal code falls into both Leyden and Proviso townships, Edward said he considers himself a resident of Northlake.

The driver of the vehicle is charged with failure to reduce speed to avoid an accident. He does not face felony charges.

Edward Janus, Passionate Online Activism at its Finest

Written by: Ann Pietrangelo

Published Article May 27, 2010

Ann Pietrangelo

Ann Pietrangelo is a freelance writer and partner in WebCamp One LLC. Her interest in health care policy is borne of personal experience. A multiple sclerosis patient advocate. Her staunch belief in affordable and accessible health care for all fuels her passion for health care reform. In addition, a person with a big and caring heart for People and Animals. I am so proud that I can be able to call her a friend of mine. I was honored when she asked to write about my Internet Activism.

News Article: Edward Janus, Passionate Online Activism at its Finest

When life drops a mountain in front of you, you can give up or you can forge a path around it. Edward Janus chooses the path every time.

“In my own little way, I am trying to help the disabled and others with my online activism.”

Don’t let him kid you -- Edward Janus does nothing in a “little way.” You see, when it comes to matters of disability, Edward knows of what he speaks. He has cerebral palsy, is almost completely deaf, and has endured multiple surgeries on his cervical spinal column (neck). Infections lead to having both legs amputated in 1997.

His brainchild, Disability Network Connections, reflects his passion to organize the power of the internet and to empower persons with disabilities. And empower them it does, providing information on how to

inform and lobby lawmakers about issues facing people with disabilities;
take action via letter-writing and email campaigns and petitions;
and use blogs and social networking to bring issues to mass media attention.

Founded in 2001, the site also provides informational links to other activist sites of interest. It is a truly a labor of love

Not that all this activity is easy for Mr. Janus. It most assuredly is not. But it is important work and, as he puts it, “I can click my mouse while at home in my wheelchair, using the world wide web and my little computer.” In fact, pretty much all of his activities take place online, including his personal finances and shopping. When regular use of the computer became an absolute necessity, “time-passer,” and “brain occupier,” he decided to use his newfound knowledge to help other people in his situation.

Oh, and due to the physical difficulty of using a standard keyboard, he does all that using a mouse and a virtual keyboard. Talk about determination! Nothing stops this guy.

Let’s Get Personal: Life, Love, Loss

Born in Chicago in 1953, Edward now resides in Northlake, Illinois. Married in 1989, he has one daughter, Cheralyn.

It was his wife, Charlene, who purchased a computer and opened the door to the world outside his home. It began with a few orders for groceries, online bill-paying, learning programs, and gradually morphed into social networking and sparked an interest in political and social activism.

Life took a horrific turn in the summer of 1999 when Charlene was struck by a car while crossing the street. Tragically, she did not survive.

The sudden catastrophic loss might tempt one to succumb to self-pity and crushing despair, but Edward knew he had to be strong for his eight-year old daughter. Strong, in this case, is a gross understatement. No child could ask for a more solid and dedicated role model.

One of the first things he did after his wife’s passing was bring up the subject of organ-donation, allowing his young daughter a role in the decision-making process. The child, embodying the same spirit of compassion as her parents, didn’t hesitate. Consequently, Charlene’s last gracious act on earth was to improve the health and the lives of a several strangers.

The grieving husband did something else that few in his place could. He put aside his unimaginable pain and mustered the strength to phone the 74 year-old driver who accidentally hit Charlene. The man wasn’t available, but Edward did speak to his wife and offered his forgiveness. “Maybe we could both heal together.”

In addition to her role as supportive wife and loving mother, Mrs. Janus was the family breadwinner. Forced out of the workplace years earlier due to health issues, Edward now must rely on social security disability as his sole source of income.

None of that is cause for self-pity. “I count my blessings,” he says. “What makes me happiest is to be with family members. I also like to watch the news and political shows so I am aware of what is happening in the world. Some of my biggest challenges are affordable transportation and finding a doctor who understands the unique pain needs of the disabled.”

Cheralyn, now 19 years old, is thriving, due in no small way to her father’s guidance. She attends a community college and works as an assistant teacher at a day care center.

Why He Does What He Does: "I Count My Blessings and Want to Help Others"

The World Health Organization (WHO) estimates that 10 percent of the world’s population -- approximately 650 million people, of which 200 million are children -- live with some form of disability.

According to the U.S. Census Bureau (2007), 18 percent of the population of the United States has some level of disability, representing 51.2 million people, 11 percent of which are children. Of those, 32.5 million have a severe disability. The number of Americans age six and above who need assistance with one or more activities of daily living is 10.7 million; 2.7 million aged 15 and up use a wheelchair; and another 9.1 million use other mobility aids such as a cane, crutches, or walker.

It is a desire to make a positive difference in the lives of these people that drives him. Through social and political online activism, he can -- and does -- make a difference, culling through about 100 emails a day and spending approximately 25 hours a week participating in some form of online activism.

This includes keeping in touch with congressmen and senators, writing and signing online petitions and letters to the editor, and managing his website and blog. Edward is one of the many strong voices and a driving force in the movement toward comprehensive health care reform.

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He begins each day with a visit to one of his favorite causes, The Hunger Site, an online activist site dedicated to eradicating world hunger. A simple click of the mouse translates into food for the hungry. (For more information, please visit www.hungersite.com.)

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Edward also lends his online support to the causes of animal rights, jobs for the disabled, environmental issues, government accountability, fair media reporting, education, human rights, and the homeless. He is an active member of the Care2 community.

When asked specifically what motivates him to take on so much, the response is typical of Edward. “I count my blessings and want to help others. I am motivated by the need to help people and I know my online activities are the only way I can do it. Since I sign so many letters and petitions, it is hard to keep track, but I do believe that the only way to make changes is through many voices getting together.”

Getting Results: "We Still Need to Work Together"

Saying that the recently passed Patient Affordable Health Care Act was long overdue, Edward describes the legislation as a good start with room for improvement in the future, with a goal toward securing Medicare, Social Security, and provisions for disabled people.

A supporter of President Obama, he is also pleased about some minor improvements in the Americans with Disabilities Act, and the nuclear weapons treaty between the United States and Russia.

Still on his radar is the need for further improvement to disability benefits. The long wait time and struggle through red tape troubles him. “We still need to help all our politicians to work together on human needs and the environment instead of fighting.”

On Living with Disability: "Don't Give Up!"

According to Edward, among the biggest challenges for people living with disability are to be accepted as regular every day people, securing employment, and transportation.

When asked what advice he would give to people dealing with disability he replied, “My advice to those with a disability is to not give up, and to find a doctor who understands your needs. To family members, I would say to not forget your loved one and keep them involved in family activities to the greatest extent possible.”

“I think it is important to use inclusive language to get away from terms such as ‘retarded,’ which have negative connotations. It can go too far, but it is better to err on the side of caution.”

Reaching Out

The wealth of information on Edward’s not-for-profit site is free to use, but there are costs involved in keeping it online and up-to-date. Donations are welcome and most sincerely appreciated.

When contacting Edward, please be patient. He doesn’t generally participate in chats or instant messaging, and has difficulty in using a keyboard. Using a mouse to manipulate a virtual keyboard takes time, so hang in there. He's sure to be checking in on the comment section below.

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Edward Janus, Disability Network Connections: EdwardJanus.net * On Twitter * Profile on Care2 * Contact Form * List of Social Networking Profiles

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I first came to know of Edward when he left a supportive comment on one of my Care2 articles. Then I noticed that he was promoting the article on Twitter. Soon we became Care2 friends and my interest was peaked. One look at his website and I was completely blown away by his story and by his daily mission to put something positive out into the world.

During the course of getting this article together, contact was sporadic due to serious health issues. I’ve never met Edward or even spoken to him on the phone, but knowing him has certainly put my own little mountains in perspective -- and that is, after all, part of his mission. Chalk up another success, Edward.

The story of Edward Janus is an important one for people living with disabilities -- and for those who are not.

None of us gets through this life unscathed; it is what we do about it that defines us. Edward Janus chooses to work on making the world a better place. More power to him.

www.EdwardJanus.net | Disability Network Connections.

Edward Janus | Disability Advocate and Activist. Fighting for Persons With Disabilities. Making Our Voices Heard. Internet Activism for Supporting Causes. Sharing News and Resources.