About Us & History, Mission, Purpose, Staff
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A spinal cord injury affects the entire family.
Our mission is to connect families dealing with spinal cord injuries with the life experiences of others, and to provide medical information and resources.
FacingDisability.com was specifically created to connect families who suddenly have to deal with a spinal cord injury to people like them who have already been there.
It’s a first-of-its-kind Internet-based effort to collect life experiences surrounding spinal cord injuries and bring them to the world. It is a gateway to healthcare information from spinal cord injury experts, and the life experiences of more than 100 family members who are living with spinal cord injury every day.
The website contains more than 2,000 high-quality HD videos from interviews of family members answering real-life questions about how they cope, as well as interviews with top spinal cord injury experts on important medical subjects. It’s a video library that contains powerful evidence that successful, fulfilling lives are possible after spinal cord injury.
A spinal cord injury affects the entire family. FacingDisability.com is designed to help families cope effectively, resiliently and creatively with the changing realities of all their lives.
The website is funded by the Hill Foundation for Families Living with Disabilities, a 501(c) (3) non-profit, established by Robert Hill and Thea Flaum.
Like many projects of this nature, FacingDisability.com was born out of personal experience.
In the summer of 1986, after diving into a swimming pool, our daughter, Vicki Hill, sustained a neck injury resulting in quadriplegia.
During her rehabilitation, Vicki was fortunate to be able to participate in a peer- mentoring program. The program introduced her to other people who had sustained injuries like hers a few years before. They helped her learn how to think about her disability and live with her new body.
They offered a lot more than well-meaning help and advice. They were the undeniably believable and unquestionably honest voices of experience.
And they were an enormous help.
But there was no peer-mentoring program to help her parents, family and friends to deal with the new life situations that they themselves were experiencing as a result of Vicki’s sudden disability. There is still virtually nothing today—no program focused on personally supporting the people around the injured person.
What’s more, even today, there are many people with new spinal cord injuries like Vicki’s who are not able to participate in peer-mentoring programs.
The lack of such programs is the reason behind FacingDisability.com.
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.
Thea Flaum, President of the Hill Foundation, is the creative leader of the website. She comes to the foundation after a 35-year-career as an Emmy-award-winning television producer. So it’s no surprise that she created a website that took what she knew about the power of video and used it to connect families who suddenly have to deal with a spinal cord injury with people like them who have “been there” and “done that.”
Robert A. Hill is co-founder of the Hill Foundation, and the moving force behind its creation. Bob is the founder and chairman of Floor Covering Associates (FCA) and a major figure in the floor- covering industry, highly respected for his leadership as well as his business accomplishments.
Bob Hill and Thea Flaum understand the needs of families facing spinal cord injuries because their own daughter, Vicki Hill, was injured in 1986 after diving into a swimming pool. Thea and Bob created the foundation and the website in the belief that connecting with the life experiences of others who have been down the path ahead of you often helps people find their own strength and support.
Annie Hambleton, Director of the Hill Foundation, has been deeply involved in every aspect of the creation of FacingDisability.com. She works behind the scenes in the production of every video on the website. She administers the blog, forums, peer counseling and resources sections of the website, and also oversees development and outreach. She is the day-to-day problem solver for the foundation. Annie is a graduate of Trinity College (CT).
Stephanie D. Lollino, Executive Producer of the Hill Foundation, is a Chicago-based writer and veteran television producer, and has been working with the website since its inception. She oversees the structure and the overall tone of all writing and video production for the site.
She also heads the newsletter team and writes articles for major disability publications, such as “New Mobility” and “Exceptional Parent,” on various SCI subjects. She says her extensive background in research, media and creative communication turns the task of improving the lives of others into a dream job. “Making people aware of SCI, and everything that goes along with it is something I’m really proud of.” Stephanie enjoys outdoor sports and fitness — especially with her husband and two daughters.
Dan Lombardi is the chief architect of all video production for the website. A highly experienced TV professional who has made hundreds of television shows, Dan designed the entire production plan for FacingDisability.com, including equipment selection, background design, shooting schedules and workflow. He began working with the foundation at the start and remains an integral part of the website’s think-team. Dan is president and Executive Producer of Grand & Noble Productions, an independent production company based in Chicago.
Brian Sharpe is the sensitive and talented director/editor who has created the visual identity of the website videos and a communication style that connects with viewers. He has edited all of the more than 1,000 video excerpts on the site, shaping the comments of more than 100 people to make sure they communicate effectively. Brian is Senior Producer at Grand & Noble Productions, and an invaluable member of the website team.
Kristine Cichowski, our Resources Consultant, has worked in the healthcare industry for more than 30 years. She was the founding director of the Life Center at the Rehabilitation Institute of Chicago who developed their extensive collection which provides a vast array of disability information. She has developed systems and processes to help rehabilitation clinicians, physicians, and nurses better understand the results of patient care and what is needed to successfully resume key life activities. Click here to read more about Kris.
Rona Talcott, who created the compelling images on our website, is known for “photographing people from the inside out.” An award-winning photojournalist whose assignments took her all over the world for almost 40 years, she has photographed people in every conceivable lifestyle and profession. Rona’s work focuses on relationships and captures the interior lives of her subjects. Her work has appeared in countless major magazines and commercial publications worldwide.