I have written many times about my struggles with the medical industry not providing interpreters over the years. I have talked and educated doctors, hospitals, and everyone I meet about the needs of the Deaf and DeafBlind regarding compassionate care and the need for interpreters. I have fought through legal mediation programs provided through my state’s ADA advocacy office, as well. You would think the message would sink in at some point. This week proves to me that very little has changed.
First, I had a follow-up mammogram at the hospital in the nearby city. A few months ago, another lump was found in my breast. I have had many over the years. I was told then that I would be called the next day through their rapid results program because I had had all of my previous scans with this same hospital, and I gave them a telephone number and a passcode to prove it is me that they reach. Two weeks went by, and I had heard nothing. My doctor called, and said I needed to call the hospital regarding my scan. I made a few attempts with IP Relay which is another form of Deaf relay where I can type to an operator who reads my message to the other caller and then types back to me the caller’s response which I read in braille. I get a written transcript of these calls for future referral or even evidence, if needed. The receptionist at the office refused to take my call. A couple of days later, as I was still working to find a way to get the office to accept my call, a letter came informing me that I had a suspicious lump and needed another scan after Christmas.
That recheck was over two weeks ago. Again, I was told that I would be called the next day. Again, I wasn’t. I mentioned that day that they had refused my relay call before, and that I needed them to accept the call if I had questions or needed information. I was assured that they would. Two weeks later, I made the call. After a couple of attempts, they finally accepted my call. I asked for my results. I was told that my results were normal. I was confused, since I knew I had a lump. Of course, those can be fluid and go away on their own, but I could still feel mine. I questioned the person to clarify. “What about the lump I had that needed to be checked? Do I have the lump still or is it gone?” The reply was, “No, you didn’t have a lump.” I then further questioned why they didn’t call me. “We tried, but your husband’s voice mail was full.” That was a lie. My husband hates talking on the phone. He seldom gets phone calls except for these types from doctors or service people and there aren’t many of those. I told her firmly, but as politely as I could that wasn’t what happened. I then asked about a letter that should have been mailed long before now, at least. “Oh, we mailed one the next day, but it was returned.” Uh, no! She read the address which was correct. Mail from them has come before correctly. Yes, I am aware that mail can get lost or a stamp fall off, but the chances of that happening the first time and this time and with the lack of confidence in the fact they tried to call (We gave them multiple numbers to me and my husband. They didn’t try me at all.) She assured me she would send a letter that day. I thanked her, and I tried to explain how there was anxiety surrounding this issue for any woman and these issues of not communicating properly only worsened that anxiety. She apologized for the inconvenience. A few days later, a letter arrived. It stated that I had a suspicious lump that needed further examination, and I need to make another appointment. Confused? I know I am. And precious time ticks on.
In another separate, but related issue, I had to return today to my gynecologist for an ultrasound for cysts or lumps on both ovaries. This was another follow-up on this and was set a few months ago. An interpreter was present when the appointment was scheduled and approved the date and time, but stressed that the paperwork had to be sent to her prior to confirm. We showed up today, but the interpreter didn’t show. I began to get nervous, though I have a general idea of what was to happen, because I can’t understand specifics, I can’t ask questions, and feared not getting full understanding if something had changed or more needed to be done. The nurses, nor the doctor seemed to think it was a big deal. “We don’t know what happened. The interpreter should have been here.” “Did you send the paperwork to confirm?” “Well, I don’t don’t for sure, but the interpreter should have been here.” I made it very clear that this interpreter is very professional and dependable. If she couldn’t make the appointment, she would call, but the appointment had to have been confirmed by the office to ensure her presence for the appointment.
I was given a choice. A decision had to be made. Would I stay and do the appointment without an interpreter, or would we need to reschedule? Neither option was a good one. Rescheduling was not good because my husband took off work to take me, and we live 50 miles away. This was not an short journey to make. My husband doesn’t complain, but he has a hard time keeping much leave due to having to take time for his appointments, work-hour only errands, and my appointments. Coming back really wasn’t fair to him. Doing an appointment without an interpreter is never a good option, either. Though, I know generalities of how the test is done, specifics can be different with different examiners. More than once, too, I have had to tell the examiner some fact about me that made a big difference in what results would be received or treatment would be done. For example, at this same office, I have had to tell the examiner before that I was told the cyst was high up when the examiner told me through an interpreter that she could no longer find a cyst. I immediately told her the information I knew, and the examiner made adjustments and found the cyst. If I hadn’t known the examiner was saying she couldn’t find anything, the appointment would have ended with everyone thinking the cyst had gone away on its own, and I wouldn’t have been seen again for at least a year during which time a lot of not so good things could happen. So as the expression could be said, though anxious and it was showing, I sucked it up, put my big girl panties on, whatever, and went through the appointment without an interpreter. Knowing from past experience, I mentioned right off about the main cyst being high which was a good thing I did. I had questions about my conflicting mammogram results, but I couldn’t do anything about that today. My husband tried to mention it, but he wasn’t sure what to say. Without an interpreter, I couldn’t get or give proper feedback. Again, precious time ticks on.
Still, after all this time. Few people understand. Too many people think I shouldn’t need an interpreter. Going today without one actually feeds that misinterpretation, too. They say, “Well, you didn’t need one for this appointment. Let the doctor look at you. You don’t need to know what the doctor says now. Your husband can tell you later.” I try to tell them to put themselves in my place, and see how they would feel being in the Dark Silence with little to no way to know what is happening, understand what is being said and done, contribute information that could lead to a better diagnosis and treatment plan, get questions answered, have anxieties relieved, make my own decisions about my own body and the care I receive, feel independent. Few people can truly do that. They just don’t see the big picture. They can’t imagine how they would feel or what they would need if they were Deaf or DeafBlind. They can’t see how it really is a big deal.
Interpreters are not just a good tool to have. They are a MUST HAVE! Interpreters allow me to hear your voice, and they allow me to use my intelligence and my voice. I needed to try again to get people to listen, so I’m back writing. Now, I have to work to make the doctors understand, as precious time ticks on.