Thank you to the Christopher Reeve Foundation for allowing me to be a guest blogger to discuss some amazing projects I am working on with a beautiful organization called Open Inclusion. We work with people with disabilities and brands to make products and services more accessible for all!
Change only happens when we speak up, take action, and do something about it!
Over the last 18 months, I have worked tirelessly to marry my professional career with my disability advocacy work. I reached a point in my life where the work I engage in needs to be meaningful and help others in the disability community. I have come to realize this is who I am at my core – a person with a disability who believes in paying it forward, human kindness, and advancing inclusiveness for all.
I have been extremely fortunate to meet incredible leaders around the globe who have asked me to participate in delightful projects to help people in the pan-disability community gain meaningful employment, have their voices heard and time compensated for their insights. I am involved in many projects, but what is incredibly humbling to me is working with companies that truly celebrate my lived experience with a disability.
One such beautiful company I have recently started working with is Open Inclusion. Open Inclusion is an inclusive research, insight and design agency based in the UK and operating globally. Open has been built with, for and by people with disabilities. We amplify the voices of our diverse insight community by informing leading brands of their diverse customer need to help create solutions that are desired by people with disabilities, and better for all….”
Becoming a quadriplegic and being paralyzed from the chest down may appear to be the most challenging life altering event many may ever go through in their life. However, leaving aside the endless secondary complications that can arise from living a life with paralysis such as pressure sores, nerve pain, respiratory issues, osteoporosis, infections, bowel obstructions, bladder incontinence, to name a few, can, often times, pale in comparison to the financial burdens associated with living a life with paralysis. The financial hardships associated with any type of disability, one could argue, is more debilitating than the disability itself!
For the purposes of this article I’m going to be discussing some of the financial challenges and realities of living a life as a quadriplegic as opposed to a paraplegic. In general, a quadriplegic needs round-the-clock care to help with basic functions such as going to the bathroom, eating, dressing, etc. While every injury is different and there are certainly some quadriplegics who I know who live independently, I will tell you about my life in particular.
There’s an art and a science to pretty much everything in life and surviving for weeks on end in the ICU is no different. With a majority of medical professionals being woefully under trained in all of the secondary complications accompanying spinal cord injury, the thought of trying to stay alive while you’re in the hospital can be a daunting prospect -especially when you have to play your own investigator in assisting these professionals with your diagnoses.
However, while there’s definitely a certain amount of research, planning, and preparation that needs to be thought out by the patient when you are essentially locked into the hospital by your medical professionals; you can have a little fun with it as well. Living on the edge of life and death, as many folks with spinal cord injury will very likely attest to, I find taking a dark humor outlook on most situations to be healing for my body, and my soul.
Despite my long ICU stay in 2016, I maintained a cheery disposition, but this time I decided to do something a little bit wackier to pass the time. What pray tell did I do you may ask?
It’s hard to believe that it’s only the middle of February and with the state of affairs in the world today I try very hard to focus my energy on affecting change in whatever capacity I am able to in order to bring a little bit of light into this world. I’ve said this time and time again, but kindness, positivity, and perseverance go a long way in my book.
I would be a hypocrite if I didn’t attempt to put actions to my words. So, I have made quick work of focusing on two new Blue Cross and Blue Shield cases, which I believe are so important for so many who are disabled.
My overarching mission in these constant insurance battles is not to just simply win “stuff” from insurance companies, but rather to strategically attain medically necessary durable medical equipment that not only improves the quality of so many people’s lives, including my own, but our independence and dignity.
The challenge lies in that many of our health insurance policies are simply outdated and many of them do not factor in the special needs for those who are severely disabled. With that said, it is my goal to create a host of documents with letters of medical necessity written, so patients can just hand them to their doctors and fill in the necessary personal information.
I’m working to change the system from the inside out, but in the meantime many of us really need to learn how to operate and navigate within the broken system we are currently faced with. It’s not easy and most people don’t have the time, energy, or know-how to get things accomplished. Unfortunately, many people just take their insurance policy at its word and don’t test the system.
Change does not come from blind compliance!
We have to push the boundaries because we are, the disabled community, a very much forgotten about segment of the population in the eyes of health insurance policies.