If you have a disability and need assistance, it really matters if you get it

Philip Edles
September 13, 2023
HELP team at 50th post SCI celebration
The HELP research team at the 50 year post-SCI celebration

How difficult is it to understand what it’s like to need a wheelchair and the assistance of others to do the most basic activities we do to simply survive? It’s not difficult to understand; it’s impossible—unless you are the one who needs the help. You can no more imagine yourself into living a life with a debilitating disability than you can accurately imagine yourself into the life of a parent if you've never had a child.

When you have a debilitating disability the importance of having someone you can rely on is immeasurable. For a person who has with little or no ability to move their limbs, as is the case for people with severe mobility limitations from spinal cord injury (SCI), you can count in days how long they will survive without somebody’s help. They rely, every single day, on someone for food and water, getting out of bed, bathing, eating, a safe place to live, and whatever else they need to keep their bodies healthy.

September is Spinal Cord Injury (SCI) Awareness Month and celebrates people with all types of injuries and capabilities. Certainly not all, but many, rely on others for their everyday needs, which is why MUSC’s Health, Employment, and Longevity Project (HELP) team celebrates caregivers who support those who need assistance. There isn’t anything small about caring for someone. Caregiving is rarely a 9-5 job. For family members and friends, it’s a full-time effort. And professional caregivers who give their all for their clients are critically important.

SCI group at RiverdogsFor these reasons, our HELP team is working diligently to better understand how caregiving affects those with spinal cord injury and other disabling conditions. One of our current projects is determining if those who need transfer assistance have been left in bed all day, or, worse yet, in their wheelchairs all night. On the surface, that can be very dangerous in many ways. We are exploring how such a situation affects the physical and emotional well-being of the disabled. That’s just one of our many projects in progress. Our goal is to provide evidence-based, real-world data that reaches those who can benefit from it, informs policy, and improves the quality of life for those with SCI and others who need assistance.

Please join us this September in honoring caregivers for their behind-the-scenes, often quiet and unnoticed, but invaluable efforts every day as they continue to support those who rely on them. We are incredibly proud of each and every one of you.

Dr. Krause, who has had serious SCI and better the electric wheelchair user since 1971, passes along his personal gratitude and hopes that an increase number of people will take interest in serving as a caregiver for people with SCI or other conditions. It can be a wonderful learning and caring experience that helps prepare young people for the new challenge.

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