There’s Nothing Like the Voice(s) of Experience

A spinal cord injury affects the entire family.  For families who are dealing with a new spinal cord injury, there is often a sense of isolation that affects them as well as the patient.  Their world has also been suddenly and drastically changed in ways that it’s hard for anyone outside to really understand.

Now, there’s a new website, called FacingDisability.com, that uses the power of video to help families connect with the real-life experience of others who have “been there” and “done that.”  The website has more than 1,000 videos of people with spinal cord injuries and their parents, spouses, siblings and children talking about what they know and have learned from their own experiences.

The best answers from interviews with more than 100 people have been put up on the website.  The answers are short (most are no more than one- minute long) specific, personal and honest.  There are no words of advice and inspiration—just a straightforward sharing of real-life experience.

All the people have been recorded on high-quality HD video. “Seeing and hearing the person who’s doing the talking makes for much better communication than just reading their words,” says the non-profit Hill Foundation of Chicago, which created the ground-breaking website.

The website is organized around a series of 48 questions divided into such topics as: “First Days after SCI,” “Financial Issues,” “Relationships” “Sex and Social Life after SCI,” “Life after SCI.”

Since it can be especially helpful to hear from others in similar situations, visitors to the website are able to narrow their search to answers from people. They can search from parents, spouses, siblings, etc., or by gender, level of injury—paraplegic or quadriplegic—and by the age at which the person was injured.

Another unique feature is the Peer Counseling program, which matches people who sign up with someone who has had several years of experience in dealing with a similar spinal cord injury. The communication is by email exchanges made through the website.  The people on both sides are anonymous.  The service is free.

The question-and-answer format also works for interviews with spinal cord injury experts on such subjects as “Social Life in a Wheelchair,” “Sex and Fertility after SCI,” “Spinal Cord Injury 101” and “Pediatric Spinal Cord Injuries.”

Facing Disability also hosts forums, a blog and an extensive section called “Resources on the Web.”

People often say that “there is no substitute for experience.”  FacingDisability.com is proof that it’s true.