Note: this took place in Spring of 2016
American Sign Language (ASL) is my natural mode of communicating as a deaf person so imagine my horror when one day, I found my hands “handcuffed” with clothes tied around them and unable to move at all. I was terrified and tried to scream before realizing it had to be some type of dream.
At some point later, I woke up seeing my parents and cousins standing at the end of my hospital bed in a bright room with the sun coming through the window. My last memory was going to the ER with severe back pain and strange lung sounds that were audible to my parents. The sign language interpreter came alongside me and asked how I was feeling. I asked how long I was there — “3 weeks” — it turns out that I was heavily sedated and in/out of consciousness with the interpreter asking me questions conveyed by the doctors whenever I could answer.
She said I did sign the word “hallucinating” and that’s when the doctors weaned me off the antifungal medicines (no more nightmares).
My back pain and noisy lungs were actually harbingers of a potentially lethal pulmonary embolism (PE) that had caused acute respiratory distress syndrome (ARDS). My lungs were rapidly filled with fluids. My life was saved by an emergency tracheotomy. Doctors told me the underlying cause of my embolism was likely colon cancer for which I had been undergoing chemotherapy.
The healthcare community is acknowledging that social determinants are vastly overlooked when we think about our healthcare system.
But what about disabilities?
Even patients with their hearing intact have a hard time navigating the healthcare system. Patients with disabilities suffer these challenges manifold.
In my case, having spent 10 years working for the Department of Health & Human Services equipped me with the knowledge to ask questions of my doctors and understand my treatment options after my cancer diagnosis.
But I do sometimes wonder about how less knowledgeable patients with underlying disabilities fare.
Research on health literacy for the deaf people haven’t been studied in depth.
A recent article published for the CDC concluded that 30 years after the passage of the American with Disabilities Act, health inequities still exist for the deaf & hard of hearing especially sign language users.
A study of 36 deaf and 38 hearing college students regarding cancer information revealed that the hearing participants were more likely to understand the diseases and treatment options than deaf counterparts.
What I do know for certain is that if we improve our sensitivity to how navigable the health system is for patients with disabilities — all patients will benefit.
Back to my own situation.
My parents were not afraid to advocate for me when they realized that the local ER didn’t have the expertise needed to treat me and demanded transport to Johns Hopkins Hospital by helicopter where my oncologist was.
I found out that the hospital accommodations office initially assigned the interpreter to my case on a limited basis due to “resources” but the ICU chief overrode that decision having determined that it was important for his team to communicate with me in any way possible to provide the best care possible.
I was assigned someone on a 24-hour basis and it was a huge help as I was able to sign whatever I could to the physicians treating me via the interpreter as they adjusted their treatment during my entire 5-week stay in the ICU.
A team of family, doctors, friends, and I ensured I got the right interpreter and everyone had access to my medical history. I was not alone and very lucky.
My mission is to make sure other patients in similar situations are equally fortunate. My next move is joining the board of AMPHL (Association for Medical Professionals with Hearing Loss) and attend our conference in June to seek more resources and ways to help in this area. Do check us out!