I Don’t Sit Around Reminiscing About Walking
Disclaimer: I must preface this post by saying that the thoughts that follow are solely my own, I cannot claim to be some oracle of any demographic; but these are my genuine opinions and thoughts.
Twice this week I've seen programs on television that highlight spinal cord injuries (SCIs) and both programs execute the topic with the cookie cutter precision of inspiration porn. For those of you unfamiliar with the term, I apologize for sounding so crass and irreverent; I did not coin the term. Inspiration porn is a colloquial term used to describe situations of disability in a light that makes the general population or “gen pop” feel inspired by watching someone “overcome their disability”. Let me break down for you what this looks like and my feelings about it.
In one of the instances I saw on television there was a person who recently had a SCI and was devastated at the idea that they could no longer play with their toddler and expressed the deep desire to be walking again. While, of course, having such a life-altering experience is extremely challenging what stood out to me the most was not their words, but the way this was shot and edited to imply that being in a wheelchair would prevent them from interacting with their child and that walking again would make them a better parent. The media often uses stories like this to perpetuate disabled people as icons of tragedy.
People tend to not think about how these sorts of portrayals affect the disabled population and what kinds of stereotypes they perpetuate. While giving hope to those few who can potentially overcome some aspects of the injury is great, don’t get me wrong, but when you are spreading this “if you work hard enough you can overcome it” message to the gen pop it comes at the mental, physical and quite often financial cost to those who are in the majority.
SCIs, like all disabilities, vary so widely and not one of these programs explained the diagnosis, like whether the injury was complete, what functions the person had and how many thousands of dollars they were spending on rehabilitation (that topic requires its own post entirely!). As long as these programs are not informing the viewers of how disabilities work and the differences between them we are lumping anyone in a wheelchair into the same category.
If you’ve read my “About” page you might know the story behind my SCI, but I’ll give you a quick run down if you missed it; you should totally go back and read the FAQs at least, they’ll give you a laugh. In 2007 at the age of 17, I had a BMX accident while on family holiday. I fell forward landing on the front of my head pushing my chin into my chest, compressing my cervical spine to the point my C6 vertebrae shattered and pressed onto my spinal cord causing the injury. I know some of you just got the heebie-jeebies reading that, I’m sorry! Alas, the injury left me an incomplete quadriplegic, and this is where spinal cord injuries get confusing. There are two main categories of spinal cord injury:
Complete: where the level of injury is a stop and no function or sensation is able to pass below that level.
Incomplete: where the injury has caused damage to the spinal cord but some signals are able to pass allowing a ranging level of sensation and/or movement below the injury.
To get technical for all you physiology nerds out there (I’m looking at you, Susan) the spinal cord has dorsal (back) and anterior (front) nerve roots running down it. Roughly, the dorsal nerves are responsible for sensory while the anterior nerves control function. Therefore, depending on which side is more damaged in the injury, in an incomplete SCI, the person may have varying degrees of sensory or motor function. Since my neck snapped forward, I damaged the anterior more than the dorsal. My incomplete quadriplegia is defined by, some mild sensation in my lower body and limbs, meaning I can feel some touch but not pain or temperature and C7/C8 function in the pinky and ring finger of my left hand, giving my wrist and finger movements slightly more strength than my right. Confusing, right?
The TL;DR (too long, didn’t read) summary for those who aren’t physiology nerds is: I damaged the front of my neck more than the back, so I can’t move anything from the chest down at all and have limited functions in my hands, but I do still have a little bit of sensation in those areas.
Regardless of all the medical jargon, people don’t realize the spectrum of function and sensation that different people with SCIs can have. This means that when they hear of someone with quadriplegia walking again or getting function back, they think it’s a miracle or some superhuman sense of sheer will. But, the truth of the matter is that some SCIs will be able to regain certain things and others will not.
Looking at SCIs and disability as something that needs to be overcome perpetuates the stigma that living with a disability makes you a second-class citizen that should always be striving to return to “normal”.
While there are some people living with SCIs who strive for those sorts of personal goals, there are also those who choose to flourish in new ways while embracing this new identity and lifestyle. While those who fit the former category are the ones that the media make viral and celebrate ad nauseam, it is good to remember that those who are in the latter should be equally celebrated.
For me, I have chosen to flourish and embrace this identity. While I would not wish a SCI on anyone because yes, obviously there are numerous challenges, the injury has opened up new chapters in my life and given me opportunities that I never would have had previously. It has helped me grow into a more confident, compassionate, patient and stronger person.
Because of the icon of tragedy portrayals sensationalized by the media, people come up to me and congratulate me for leaving the house and offer all their “proven” medical advice on what will miraculously “cure” me! While I always appreciate any positive thoughts, prayers, and well wishes, I really just want people to know that I don’t just sit around reminiscing about walking or missing my old life. I love my life and am even thankful for all the benefits and opportunities I have gained from my quadriplegia. I am, without a doubt, a better person now, not in spite of my disability, but because of it.