For an audio version go to http://youtu.be/fyU0mlqeFz0
Recently I saw a post on Facebook of a link to a news item. The piece was about a woman who “defies odds, learns to walk again after spinal cord injury”. The piece explains that she did so through “faith and fortitude” making “a liar” of doctors. As a person who lives with a disability, these kind of headlines frustrate me to no end, but I decided to give the piece a chance, and so I watched it, as well as read the attached article.
(To read and watch it for yourself go to http://www.myfoxorlando.com/story/26389352/woman-defies-odds-learns-to-walk-again-after-spinal-cord-injury)
Before I share my thoughts on the news item, I want to be clear that this post is not about the individual in the piece, but rather about the way the news is presented, often through misinformation, and how this leads to magical thinking.
I am not a spinal cord injury expert (SCI), and my disability is not a SCI, but I have worked with SCI organizations and individuals through my organization Citizens for Accessible Neighbourhoods. And I know that these kind of pieces are frustrating for people with SCIs because many of them would like to walk again, and these pieces make it sound as if they could walk again, if only they worked hard and had faith. This piece, however, has one glaring omission, and that is whether this woman had a complete or an incomplete spinal cord injury.
A complete SCI indicates a complete lack of sensory and motor functions below the level of injury, whereas an incomplete spinal cord injury is when the ability of one’s spinal cord to pass messages to and from the brain has not been totally lost, and that there is some movement and/or sensation below the level of injury. Some people with incomplete spinal cord injuries are able to walk again, usually with the aid of a mobility device such as a walker, forearm crutches, or a cane. I highly suspect that the woman in this news piece has an incomplete spinal cord injury. It doesn’t mean she wasn’t told she couldn’t walk again, and it doesn’t mean that she hasn’t had to work extremely hard to get to the point she is at today, but it does mean that the reporting, by omitting this fact, has lumped together two groups who have extremely different possible outcomes.
Why is the distinction of complete or incomplete SCI important? Because it would have been a miracle if she had a complete SCI, and the information would be front and centre everywhere: newsprint, radio, television, and social media, nationally and internationally. However, people see news stories such as this one, and assume it must be true, without understanding that there may be facts missing, and then they apply that information to others. I cannot tell you how many times I have been told that if only I try this treatment, or praying, or this salve, etc., that I will be cured. This is magical thinking. And this thinking comes about from these types of news stories.
Why is magical thinking a bad thing? Because it is false, and it is upsetting for people to believe that someone with a disability could be cured if only they tried harder, tried a specific product, or had faith. The reality is that those with disabilities, chronic pain and/or SCIs work hard, do what they can, and try everything possible to improve their health, mobility and lives. Unfortunately, it doesn’t always work, or if it does, success is found in more realistic, and often less noticeable, perimeters, such as improved muscle mass, circulation, range of motion, etc. Magical thinking minimizes the successes that are possible. This story lumps all people with SCIs together, and states that with fortitude and faith a miracle is possible, and some of the viewing public will believe that.
People watch stories about miracles and they want to believe. I certainly understand that. I once had an entire cupboard filled with so-called miracle cures, but none of them worked. I fell for it, and I understand why people want to believe in miracles, but I get very frustrated when people apply their desire for miracles, their magical thinking, to others, especially strangers.
In closing, I ask two things of you going forward. The first is to question what you see in the media; do they offer all the facts, are they using words like miracle and cure, would a miracle only be shown to a small audience, etc. The second is to not apply magical thinking to others. Don’t assume people who have disabilities just aren’t trying hard enough, or praying enough, or using the right product. And understand that on a daily basis people with visible disabilities are often told by complete strangers about products, therapies, and other ideas that could “cure” them. I can’t even count the times that I have had people approach me to pass on information they saw online, in the paper, or on TV, and been told that if only I did (fill in the blank) that I would get better. I appreciate people wanting to help, but first of all, don’t assume one isn’t already, or hasn’t already, tried product after product and therapy after therapy. Secondly, realize that often the news item you saw used magical thinking to make you believe it works for everyone. If you still feel a burning need to suggest something, don’t assume a person hasn’t tried it, and just quickly tell them the name of the product or therapy and move on. I have had people trail me around seawalls and museums trying to convince me to use something, and not giving up until I agree or become rude. If people with spinal cord injuries could walk again, there would be a line-up fifty kilometres long, not a small news piece. Appreciate that this woman has made tremendous progress, but keep in mind that her story is unique to her, and not applicable to every other person with a spinal cord injury.