Tuesday, May 1, 2012

FacingDisability: A New Way for Families to Cope with Spinal Cord Injury



A spinal cord injury impacts the entire family.  It can seems like no understands their new situation or the road of recovery that lies ahead.  That is why the Hill Foundation of Chicago created FacingDisability.com, a new website designed to connect families suddenly facing spinal cord injuries with others who’ve been there before them.

It contains over 1,000 videos drawn from interviews of people with SCI, their families, caregivers and experts.  People with spinal cord injuries, their parents, spouses, siblings, children and friends were asked the same 48 spinal cord injury questions, and only the best answers are posted on the site.  Questions include: “What was your greatest fear at first?” “Where did you get the best financial help and information?” “How has the injury affected your family relationships?” and “How do you see your future?”  Here’s what a few interviewees had to say.

Nick, who became quadriplegic at age 17, said, “People need to understand that having a spinal cord injury is not by any means the end of the world. It may seem like it might when you first wake up in the hospital and try to grasp the concept of a spinal-cord injury, especially when there's limited exposure that you have prior to the injury, but there's definitely a light at the end of the tunnel. There's definitely hope, there's definitely potential and possibilities. There's ever-day progress with laws, and technology and acceptance in society. So, it's definitely not the end of the road. It's just the start.”

Mary Ellen, whose daughter became quadriplegic at age 15, was surprised about how normal her life has become. “To a large extent, we're in many respects to where we were before the accident, and I never in the early years thought for a moment that we would reach that point. Certainly, we have to do things differently; family vacations are different and there are some things we can do, some things we can't do. But we're still able to pretty much do all the things as a family we did before. And instead of her disability being front and center, it's become sort of a sideline.”

Tricia, whose husband became paraplegic at age 42, voiced the option that, “The person who’s going through this probably thinks that it’s only happening to him…and it’s not.  It happens to the whole family. It’s not just their life that’s affected; it’s everyone in the family.”
There is also an “Expert” video section made up of over 200 videos from interviews with top spinal cord injury experts.  Here you can find professional answers on topics most people want to know about right away, such as “Spinal Cord Injury 101,” “Basics of SCI Rehabilitation,” “Pediatric Spinal Cord Injury,” “Preventing Pressure Sores,” and “Sex and Fertility after SCI.” 

Connecting with someone who has “been there” is one of the best ways to deal with a new injury.  FacingDisability has a “Peer Counseling” service, made for people who want to connect one-to-one through an anonymous email system.   There is also a “Forum” section where you can ask questions, or share answers.   

Finally, FacingDisability.com has over 300 of the best resource on the Internet in the “Resources” section.

The mission of FacingDisability.com is to provide Internet-based information and support for people with spinal cord injuries and the members of their families. Connecting with the life experiences of others who have been there before often helps people find the strength and support to face their new lives ahead.  For more information, contact FacingDisability at info@FacingDisability.com.

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