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.
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.)
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.”
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.
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.
More about online activism from Randy Paynter, Care2’s founder and CEO: Slacktivism: Why Snopes got it Wrong About Internet Petitions