I am Deaf and this means that I am regularly interacting with ASL-English interpreters. I am dependent on then in a variety of situations and that in and of itself is an interesting dynamic. When that dependency extends to health care the vulnerability and depth of the dependence is magnified. Not only am I relying on the interpreter for communication but also my health, comfort, medications, and really my life.
I read lips, and well, so a lot of the time I alternate between watching the interpreter and reading lips and I feel like I get a really well rounded picture of what is being said. There are occasionally additional barriers that prevent that from working, like a doctor with lots of facial hair or a strong accent. In those situations I am 100% dependent on the interpreter. Depending on the interpreter the access I get in that scenario varies greatly. I have had medical appointments where the interpretation looks like “He is using big medical words” and others where the interpreter is clarifying constantly and doing everything they possibly can to facilitate as much concise comprehension as is possible.
My rheumatologist unfortunately fits the man with an accent and facial hair description. He is very nice and seems patient to the interpretation process, but to date we haven’t really been able to interpret. Sadly we have had interpreters who are more apt to sign “big medical words” rather than attempt to ensure true communication. I don’t blame the individual interpreters. I understand that Behcet’s disease is rare and so is the terminology that goes along with it, at least for an interpreter.
Where I live a bunch of hospitals joined together and hired two interpreters to work exclusively for them interpreting medical appointments. They would be available for emergencies or urgent care appointments when they weren’t booked for regular appointments. Initially I thought this was a great idea but as I experienced the program more I realized it didn’t really have a positive impact on my access. I no longer had access to preferred interpreters, who were familiar with my medical history, and I didn’t notice any ease with booking interpreters for appointments. I still experienced appointments being moved to accommodate interpreter’s schedules and being cancelled at the last minute due to lack of availability. I am not sure what other Deaf people think but I have noticed no improvement to my access.
This past month I have sent myself on a quest to regain access to Ontario Interpreter Services and my preferred interpreters. In the end I won but only after judgement was passed on me. I was forwarded an email string that wasn’t entirely meant for me. One of the emails sent suggested I was simply upset because my language, ASL, didn’t have words to communicate the terms that relate to Behcet’s disease. It was all linked back to me and my lack of understanding, my naiveté to my own language and its “limits.” No one ever thought to question the role of the interpreter and their ability to work in the medical setting with a complex patient.
This assumption extends beyond interpreter services in health care. All health care practitioners tend to bring it back onto the patient. It is our fault if we are in pain. It is our fault if we are non-compliant with our medications. It is our fault if we don’t follow through on testing or treatment plans. The reality is that patients are complex. We hold multiple layers and identities and many of us who are deeply engrained in the system are experience a complex array of marginalizations and oppressions. Financial constraints prevent access to medications, linguistic barriers prevent access to treatment explanations and following through can be challenging, employment responsibilities make attending appointments and tests difficult, and the list goes on.
It is time that health care providers and medical support professionals learn to look externally. They need to be able to see the complexities of the patients they interact with, beyond just our rare diseases and interesting diagnoses. They need to understand all of the layers that impact our lived experience and access to health care. Most of all, they need to admit what they don’t know. The interpreter coordinator who made that comment, that I was just upset and confused because ASL doesn’t have works for my disease, never thought to ask me what the problem was. She never thought to ask what the solution was. She just made assumptions.
I recently gave this feedback to a young doctor – that she must learn how to admit what she does not know and ask questions to seek the answers. I encouraged her to look to her patients for information on how to treat us. Sadly this feedback was not well-received and claiming that I was not confident in her abilities she refused to continue to treat me. The sad thing is that I think she is a great doctor and I think she just needs to continue to engage in her growth and learning as a young physician. Her assumptions related to confidence in her ability to treat me go right back to one of my points of this blog entry – she didn’t ask me. She didn’t let me dictate what I needed. She didn’t let me explain the problem. Instead she chose to define the problem for me and let that impact my access to care and services.
I don’t know how the field can move past this until it can humble itself to the knowledge patients hold. I don’t mean medical knowledge, but I mean knowledge of our bodies and our lived experiences. Our feelings, our ideas, our lived experience, that is for us to define. That is for us to express. For Deaf patients we have an extra barrier to that expression, which are interpreters. Maybe it is easier for hearing patients, but I suspect the barriers persist regardless of linguistic and cultural identity.