As people with disabilities, we encounter many ways to advocate in our everyday lives. Our advocacy efforts can range from anything such as education, voting, or sports. However, one of the most crucial areas where an individual’s advocacy efforts are vital is in the healthcare system.
The following piece will highlight my personal advocacy journey when it comes to healthcare. I have spastic quadriplegic cerebral palsy. Due to my disability, I have been forced to familiarize myself with the healthcare system for as long as I can remember. Despite my disability, until recently, I have been in what someone would consider good health. I attend doctor appointments regularly and stay on top of my healthcare by using self-awareness to tackle potential problems before they became major issues. For example, when I feel my muscles tightening, I know I need to get in to see my physical therapist before the stiffness becomes debilitating. However, even when you’re proactive, life is not perfect.
My healthcare advocacy skills were recently put to the test when I went into the hospital for a routine baclofen pump replacement. I was not able to complete the procedure due to pulmonary congestive heart failure, a condition in which your heart is in relatively good shape, but your lungs are not. My carbon dioxide level versus my oxygen output was critically dangerous. During my 16 days in the hospital in Ocala, I was told that I have shallow lung capacity and will require assistance to breathe at night for the foreseeable future.
My advocacy skills were tested in two ways throughout this process. I was first forced to advocate for myself after I left the ICU. Once I was stable enough to breathe on my own during the day, I faced the challenge of reasserting myself into the discussion of my care from that point forward. Up to this point my mom had been my primary advocate; however, due to family circumstances and other factors she could not always be around. Although I have developed a strong voice in many areas, this was the first time I had to advocate for myself in the healthcare space. It was difficult at first because, unlike my other advocacy efforts, I knew what I needed but was unsure about the best way to voice my concerns. Since I use voice commands on my phone to call for help, I was concerned about how I was going to call out for my caregivers at night wearing a bi-pap mask for the first time as I need to switch positions two to four times a night to prevent pressure sores. By speaking up, I worked with hospital staff to come up with a call bell system I could use with the mask on.
Apart from developing a new night routine I also had to advocate in other ways. My new health crisis has created some obstacles in keeping a regular work schedule. Right now, I have an opportunity to serve as a second year Fellow for FL SAND. My new medical needs have forced me to miss time and crucial activities related to my fellowship. I am learning to talk more directly with my healthcare providers about scheduling appointments around meetings and work hours. Before the fellowship, I tended to let the provider set the schedule. By speaking directly with my supervisors and providers, I have been able to remain an active member of the program.
In closing, my healthcare crisis has allowed me to become a better overall advocate. It is said we are never given more than we can handle, and everything happens for a reason. After going through what I have gone through I truly believe those words are 100 percent true. I would give the following advice to any advocate that faces a similar situation:
First, it is important to be cognizant of the healing process, it will take time until you are back to 100 percent.
Second, let providers know you expect the same courtesy as people without disabilities when it comes to accommodating your schedule for non-emergency appointments.
Third, as with any type of advocacy, open communication and self-awareness are crucial. It is impossible to be an effective advocate by yourself. Remember that your colleagues are there to help you along your journey to return to full-time advocacy.
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