Having an impact

Learning to use disability group listservs can be a way to connect and share information

The Internet allows people from across the world to become friends and in many cases, like new members of one’s family. For families entering the new world of living with a disability there are always unanswered questions about the disability from both the patient and his or her family members.

How does the Web influence dialogue centered on a specific disability? Many advocacy and educational organizations offer programs called “listservs,” which allow Internet users to talk to one another. Participation in a listserv can provide answers and support for persons and families coping with a disability. In most cases, all a person needs to join a listserv is an email address. Users subscribe to a listserv then when someone posts a question on an opinion, others can respond.

I belong to the NBIA Listserv, which serves families with Neurodegeneration with Brain Iron Accumulation, a rare neurological disorder. Over the years I have met many families, some at the NBIA conferences and some through the NBIA Listserv.

A few weeks ago I posted some information on the NBAI listserv and Phyllis from New Jersey sent me a note asking some questions. We carried on a long-distance dialogue. When I went to the East Coast to visit my family I was able to met Phyllis and her daughter, 13-year-old Victoria. Vic-toria’s disability was diagnosed less than a year earlier.

During the weeks of corresponding I learned a lot about Phyllis’ concerns, fears and goals for her daughter. I’m sure prior to meeting the family my emails had had a positive impact on them. My concern was that their physician had not given the family some of the tools needed to raise a child with a disability. Many families have a hard time at first seeing beyond the disability and realizing that some of the issues that they are facing are part of the normal growing pains that all families face.

At age 13 any child, disabled or not, goes through difficult times. After I spent a few hours with the family, they realized they needed to make plans for Victoria to assure her independence. There was also the realization that Phyllis should not smother her daughter with care because of her own fears for her daughter. By the end of our time together Victoria was excited about the idea of getting a pink walker to help prevent her from falling and also to allow her to be more active with her friends at school and in the mall.

For me, the highlight of the visit was hearing Phyllis say to Victoria, “ I want you to be as independent as you want!”

Since coming back home, I have heard from Phyllis that both of them are talking more openly now about Victoria’s disability and her fears. The impact on this family has been very positive, both short term and long term and it’s all due to asking questions on the internet through a simple Listserv.

Editorial note: While many positive encounters can be experienced through participation in a listserv, caution should be taken by all Internet users. Listservs are an exciting and useful communications tool but they can also have pitfalls. Consider information on a listserv carefully and remember that it is not a substitute for medical or professional advice or care. If you are uncertain about information you have read, ask a professional or someone you trust to verify the information. It is best to not share too much personal information on a listserv, through emails or in text messages with persons you do not know, yet. While the face-to-face meeting in this article had a positive outcome, the Internet can pose dangers from predators or those who want to take advantage of others. Law enforcement professionals recommend that persons who correspond on the Internet not meet face-to-face unless there is every assurance that can be done safely. Consider the organization sponsoring the listserv and whether or not you consider that group to be reputable. Ask how the listserv is used. There have been situations where listserv users find themselves receiving junk mail or spam as a result of participation. Make sure sponsoring groups use listservs responsibility.