New Jersey Governor Chris Christie has again designated September 2013 as Spinal Cord Injury Awareness Month. This fits in nicely with the nationally recognized month, and will hopefully serve to educate, inform and advocate for all those people living with spinal cord injuries and paralysis.
One of my personal goals of SCI Awareness Month is to help people in general understand what spinal cord injuries really mean. Here’s a quote that sums it up:
“I don’t like it that media shows only “inspirational” people. I want people to know what happens when there aren’t any accessible parking places left. I want them to know about pressure sore issues, catheters, bowel concerns, pain, medications, the average income, assistance needed—the whole dark side. I don’t want their pity. I want them educated. Only then can they understand the need for ADA compliance, rehab availability and medical research.” – Karen Miner, C4, Roseville, California
While there does seem to be more media coverage lately about SCI, and that is a good thing, (hopefully we contribute to that as well), there is a need for people to understand what the daily challenges are for a person with SCI. The things the able-bodied population (including me) take for granted every day. With our clients and interactions with family members, we hear what the realities are every single day. With persistence, determination and a will to move forward, people deal with and overcome these daily challenges, but as an outsider, we have no idea…….
The obvious challenges are physical mobility and lack of accessibility in still so many public places. Transportation challenges are high on the list: not being able to drive, affording an accessible vehicle, relying on drivers, even getting a vehicle repaired. All can disrupt a person’s schedule for days, even weeks. Usually the unspoken topic is bowel and bladder issues. When a daily routine of bowel movements is disrupted by any number of causes (diet, medication, anxiety, physical ailments or other unknown assailants) a person’s self confidence, dignity, and emotional well being are attacked along with schedule changes and missing work, school and exercise. When bowel and bladder accidents happen either at home or in public, even those who figure out ways of dealing with it can become frustrated, angry and upset.
Any little thing can trigger a downward spiral. Sometimes a person’s emotional state is so fragile, a “simple” disruption is anything but. I can list many more challenges that none of us really see when we see someone who uses a wheelchair. Please know they exist; just be aware. That’s one thing I hope SCI Awareness Month can help accomplish.
Thanks for reading! Cynthia