ABOUT US & HISTORY, MISSION, PURPOSE, STAFF
How We Created the Website
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Interviews with People with Spinal Cord Injuries and their Families
We began by developing the list of questions—the things that everybody asks, and that everybody wants to know after a spinal cord injury happens. We consulted doctors, psychologists, therapists, rehabilitation experts and people with spinal cord injuries and their families. We ultimately developed a list of 48 questions. To make the list, the question had to be simple, straightforward, and easy to answer briefly–in about one minute or less. We understood that the people who visit the website would want to hear answers to the same question from a number of different people, and wouldn’t want to listen to long-winded comments.
Typical questions: “What was your greatest fear at first?” “Where did you get the best financial advice and information?” “Where did you get the best sex advice and information?” “How did you deal with the transition from hospital to home?” “How have your relationships changed as a result of the injury?” “What things have gotten easier over time?” “What things have gotten harder over time?” “How do you handle anger?” “How do you see your future?” “Are you happy?” Click here to see all questions.
Then we videotaped interviews with more than 100 people—mothers, fathers, siblings, spouses and people with spinal cord injuries themselves. We recorded everyone’s answers on HD video. We know that seeing and hearing the person who’s talking makes for much better communication than just reading their words.
We asked each interviewee the 48 questions on our list.
We emphasized that we were not looking for advice or words of inspiration. Instead, we asked people to tell us about their own experiences and what they had learned from them that might be helpful to others.
Everyone who agreed to be interviewed did so mainly because they understood how helpful our website would have been to them when their family member was injured. Almost nobody refused to be interviewed. People were remarkably open and honest in what they shared. Nobody seemed to be holding back.
After the interviews, we selected each person’s best answers to put up on the website. You can click any question and see and hear the best answers to it. Click here to search by Question.
We know that it can be especially helpful to hear from other people who are similar to you. So you can you also narrow your search to parents, spouses, siblings, etc. Among people with spinal cord injuries, you can search by gender, by level of injury (paraplegic or quadriplegic) and by the age at which people were injured. Click here to search by Personal Experience.
We went “live” in 2011 with more 1,000 video excerpts.
We decided to have our Experts section focus on subjects that people want and need to know about right away. There’s a lot of detailed medical, scientific and research information on the web that people usually seek out as time goes on. We saw it as our job to try to get expert answers to the troubling questions that come up when an injury is new and at its most bewildering.
We are fortunate to be based in Chicago, IL, the location of some of the nation’s best treatment and rehabilitation centers for spinal cord injuries, including the Rehabilitation Institute of Chicago, Schwab Rehabilitation Center, Marianjoy Rehabilitation Hospital and Shriners Hospital for Children-Chicago, which specializes in pediatric spinal cord injuries. They gave us invaluable help and advice in creating the website, and in finding former patients and their families for us to interview.
In addition, they helped us arrange interviews with some of the top experts in the field who are members of their staff. The expert interviews also follow a question-and-answer format. This enables you to search quickly through a list of questions that are answered by a particular expert and click on the ones that are most important to you. Click here to see all experts and their topics.
Resources on the Web
Resources on the Web is the section that we completed first. We decided to go ahead and post it as soon as it was done because it was too important to have it wait until the entire site was ready to go.
We selected more than 500 of the best spinal cord injury resources; it is one of the most comprehensive collections of spinal cord injury resources on the web.
We made the Resources section easy to use, with categories designed to help you find what you need quickly. Descriptions are written in plain English, and every single listing also contains a section called “Where to Start” to help you navigate your way to the information you want. Click here to see Resources categories.
We know that nobody understands what you’re going through like someone who has actually been there. Our Peer Counseling program puts you in touch with someone who has had several years of real-life experience in dealing with a spinal cord injury like yours. We start out by matching you with another parent, spouse, sibling or person with spinal cord injury with a profile that is similar to yours.
Some of our peer counselors are trained professionals. All are unpaid volunteers who have offered to use their knowledge and experience to provide emotional support and practical help.
The communication between you is through written messages in a private conversation on the website. The people on both sides are anonymous. The service is free. Click here to find out more about Peer Counseling.
Work in Progress
We are continually updating the website and adding new features. Please contact us with feedback at firstname.lastname@example.org.