September is Spinal Cord Injury Awareness month and for whatever reason, I’ve been struggling to say anything about it. With dozens of accounts posting about everything SCI from daily realities and accessibility to fertility and equal rights, I have mostly remained silent—struggling to offer a fresh perspective. But to provide some insight into my current frame of mind and resulting hesitancy to share, I’m going to tell you this: I’m feeling privileged. And because of that privilege, I’m questioning the validity of my voice.
Privilege within disability—it’s an odd concept. However, I’ve learned so much about spinal cord injury and this community and it is something I feel compelled to acknowledge.
For starters, there is the level of my injury—T11 (better explained as bellybutton down). Now, in no way am I minimizing the losses I have suffered, but I still have full control of almost my entire upper body. There are people working their asses off daily to try and recover function to areas of their bodies I never had to live without. And my ability to be completely independent—to not have to currently worry about a caregiver—is deeply rooted in the fact that my spine wasn’t injured higher up.
I have access. Access to medications, therapies, supplies and equipment. It isn’t always easy. There are roadblocks—financial and otherwise. But I have never had to go without something necessary or something that facilitates my independence.
My daily life is accessible to me. From my home to my adapted vehicle to my children’s school and so much of my community, I can manage my days relatively easily. It’s not perfect and there is definitely room for improvement in some areas, but, for the most part, I can go about my everyday life without major accessibility issues.
I am in a loving relationship with a man who respects me. I have a supportive family and a community surrounding me that sees my worth. And I don’t know if it is because of my confidence, my appearance or something else entirely but I have rarely felt dismissed, overlooked or as though my intellect is underestimated.
Disability is not a one-size-fits-all scenario. A spinal cord injury is a multi-faceted chronic condition that affects body, mind and spirit. I know my struggles are real and that even with these privileges, SCI has put me through the wringer. I know my experiences are just as valid as anyone elses and yet, I’m having a hard time shaking the guilt for what I feel is a headstart at the life-with-a-disability-game.
While I hope I’m bringing awareness to SCI on a regular basis, I do so knowing that, because of insurance, support and many other things, dealing with this injury is a little bit easier for me than it might be for some other people. I don’t have to worry about how I’m going to afford catheters and I’m not forced to choose between medication and signing my kids up for soccer. I feel loved and appreciated and am never made to feel like a burden on my loved ones or society.
For me, admitting privilege isn’t saying that my journey wtih SCI hasn’t been difficult—because it has been the most difficult thing I’ve ever done. For me, admitting privilege is bringing focus to the things that have facilitated my recovery and my life with a disability that not everyone is lucky enough to have. It’s saying I am thankful.
That is a lovely post, Codi, and your awareness is to be applauded. Keep pushing!
Being grateful certainly opens the doors for more goodness in your life. Lovely blog 💐
An inspiring post.
Codi, thank you for sharing.
I am lucky like you in some aspects of sci but not in all aspects.
I’m a t5 (below the boob) paraplegic and I struggle but at the same time I feel privileged that I’m not worse.
I also feel privileged that I’m able to relate to someone like you. I was lucky that our nurses at gf strong remembered you. Thank you for being a beacon for us ladies in the sci community.
For the first time since my accident 11/7/2014I have read that others feel the same pains I have. These pains are so real and are so hard to describe to others. You did a beautiful job going into detail of the exact pains that I suffer! I am a paraplegic! My legs suffer exactly as your legs do!I am blessed to be alive, and I am very thankful. I am an incomplete with a T-12 injury.
Thank you so much for sharing your story. I believe deeply that if I can get to see a really good dr, he can help get relief in some way.