Welcome to September, SCI Awareness month! This month, all our posts will have to do with raising awareness for people with spinal cord injuries and wheelchair users.
I think awareness comes in different forms for everybody and it depends on who you talk to. For me, this blog post is difficult to write, not because the topic is a difficult subject matter, but because YOU, the reader of Wheel Love, are probably already aware. You know the challenges, the hurdles and the constant stereotyping of someone with a disability. So personally, I feel SCI Awareness month isn’t writing to you about what you need to know, it’s about how you encourage others to become educated about spinal cord injury. Below I’m going to use the three A’s that have allowed me to spread awareness throughout our community.
Oh man, this topic. I still can’t believe we have to fight for this tooth and nail what seems like everyday. I see your anger, I feel your frustration and I’m here to tell you it’s ok to be super pissed off about it. There’s nothing like getting all dressed up, excited about a date night and when you get to the venue, realizing that there is no way you are going to be able to get in. I don’t know how many times Sam and I have planned an outing and we had to cancel due to an event or establishment being inaccessible. It sucks. Sometimes I feel maybe we as spouses get more upset then our partners haha! I understand the feeling of wanting to shout at the manager, send a complaint and make sure that I am heard. The problem is, this rarely seems to work. The truth? People honestly and truly don’t know anything about being in a wheelchair. They have never been around it and it’s never crossed their mind and as soon as anger is brought forth, defenses instantly go up. I have now migrated to a show, not tell, approach and you know what, it works every time. For example, I took some dance classes a few winters ago (I used to dance and thought it would be fun to dust off the shoes), but when it came to the recital, the venue was up a flight of stairs. I invited 10 of my friends in chairs. When this could have been a bad or sad situation, instead of getting upset, everyone pitched in and lifted James and all my friends up the stairs….including my friend in a powerchair!! That one instance right there was a learning lesson for EVERYBODY. People who witnessed this, the people volunteering their muscle and the people that put on the event. What a way to spread awareness to the masses. We had a great time, it was an awesome night and from then on, the event has always been held in an accessible building. Of course there is a time and a place to get mad, BUT try the show, not tell, approach first. We have had to sit at a high table for a manager to realize how ridiculous it was for James to have a drink or eat a meal on. We’ve also had the owner of a store help us up a step. Until owners or event planners are directly involved or physically see the issue, they aren’t going to know and it’s not going to be a priority. AND let me tell you, there is nothing like carrying a power chair up a set of stairs to make you realize something needs to change!
We’ve written about advocacy before and it goes hand in hand with education. James is perfectly capable of advocating for himself, however, I have found that I had to pull up my big girl pants and become an advocate in our health care system. There have been times where James (due to a bowel obstruction, broken femur or pressure sore) has not been able to strongly advocate for himself because of illness. We have some amazing clinicians and professionals in our healthcare system, but let’s be honest, the majority of health care staff are not trained in spinal cord injury. James can agree that every time we have to go to the hospital, due to something unforeseen, I go into battle mode. I don’t necessarily like that side of me, but sometimes it’s the only way we can get things done. It seems like a fight to get a pressure alternating mattress, it seems like a fight to educate nurses on Autonomic Dysreflexia and it always seems like a fight to take issues seriously… especially if your loved one can’t feel what’s wrong. The number of times our friends and loved ones have gotten a pressure sore in the hospital as a secondary complication or they weren’t seen urgently due to the lack of sensation is so infuriating. When it comes to our loved ones health, in my opinion, this is where advocacy is extremely important. I can’t say this strongly enough, please don’t feel like a burden or like you’re asking too much if your loved one ends up in the hospital. Be firm and strong in advocating for care and don’t hesitate to explain why. I’m not saying to be a total a-hole either haha! I’m not a health care professional and I can only imagine the stress staff is under, I am just saying stay firm and strong in order to get the best possible care because there’s nothing worse than going into the hospital with one issue and coming out with a completely different one. Hopefully your visit can be a positive one and with your stay, the relationship you build with staff can be carried over to the next patient with an SCI.
Social media is an amazing tool. While I have been blessed to be able to document and create videos about the wheelchair community, my story is unique. You don’t need to take that amazing photograph or create a high budget film to generate awareness or content. With the use of Facebook, Instagram, Reddit, etc, there are plenty of ways to spread SCI awareness around the world. If there is a message you want to tell, make that Facebook post or take that photo and put it on Instagram. In my opinion, we have never been in such an opportune time to educate the public about disability. The sharing of information has never been easier and I can already see and feel people becoming more enlightened these past few years, have you??
Due to this crazy time on the planet, I hope to see floods of information on SCI awareness this month as we can’t get together to create events. What is it that you do that spreads information and education and what is something you want the world to know about Spinal Cord Injury? I look forward to hearing your methods, thoughts and ideas, until then enjoy the sweaters, boots and pumpkin spice season!