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Hello!
I’ve been a longtime reader of these posts, & today I feel like I have something to contribute so I’ve created my account! My name is Sara, & for the last 20 years I’ve worked as a Teacher of Students with Blindness/Low Vision. I’m also hard of hearing. Some of the areas I teach my students include braille, assistive technology, & Orientation & Mobility (long white cane skills)…but I think the most important skill I teach my students is self-advocacy. Reading this post made me think that some self-advocacy would have gone a long way in making this appointment successful.
This does sound like an incredibly frustrating situation, Frances! I’m wondering if additional self-advocacy strategies might have helped you in this situation. Some areas would have been out of your control, such as having the dr. look at your back—annoying, but, ok, rules are rules-- if it wasn’t part of the initial referral you’ll make another appointment for that.
Areas that could have been in your control might have included some additional prep before your appointment—after all, you’ve waited 6 months to see the dr., so you want to understand all of the important information the dr. has to tell you, & help make the appointment to go as smoothly as possible, right?
Have you considered using a speech-to-text app in situations where you may have difficulty hearing & have essential information to receive? There are a number of phone apps that will do just that. Depending on your brand of hearing aids, there’s also likely a tabletop or clip on microphone that connects directly to your hearing aids that you could use as well.
I often carry an extra mask that’s designed for people who are deaf/hard of hearing. You may have seen the ones with the clear window. Those can be helpful to give others in situations where speech reading would be helpful, such as a dr.’s appointment & masks as still required. Again, like with the referral for the sore on your back, if the policy is that doctors must continue to mask up, you, as the other half of the communication team, should other ways in your back pocket to ensure a successful interaction.
Most of us know that many people, (some doctors included!) are under the impression that hearing aids “fix” hearing loss the way glasses fix vision in some cases. Those of us who wear them know all to well that even with hearing aids, our hearing is not perfect. So, this dr., when he heard your comment, “see my hearing aid?” he likely thought that since you were wearing it, you would hear/understand him.
Other than not lowering his mask, since that was the only suggestion provided to him, I’m not sure a negative review was warranted because no other options were given. Had he said no to the mask, he might have been more than happy to write information down in a notepad, use your speech-to-text app or wear a small microphone that was streaming to your hearing aids! Rather than thinking about signing some choice words, instead, see if CART is available for your next appointment.
You were asking how others handle this sort of situation. It sounds like you have another chance for a successful interaction at your next appointment, so take some time to play around with apps until your comfortable, order some clear window masks, & instead of just stating that you have hearing aids, giving some suggestions on how the communication partner is essential—"I wear hearing aids, SO IT WOULD HELP ME OUT IF YOU COULD face me while talking rather than looking at the computer/speak slower/get my attention before you start speaking,” etc. whatever it is that you need! People generally want to be helpful, but they often have no idea what to do unless we provide them with that information.
I love working on self-advocacy skills with my students because it takes practice to figure out what it is that we need, how to ask for what we need, & how to adapt when our needs aren’t being met. It takes at least 2 people for a successful communication interaction, but it’s up to us to let people know how they can help!
Good luck at your next appointment!
~~Sara
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in reply to @zach8051 Thank you for this response. I suppose I could have asked if I needed "assistance" for the appointment, IF I thought that the doctor would not remove his mask. Because there are currently no masking rules in place, presently, I was not prepared for the disrespect this doctor showed me. Even if there had been mask restrictions in place, my request for his to remove his mask, while I placed a mask on my own face, was not an "unreasonable" request according to Sutter's Code of Conduct. In the alternative, the doctor could have raised his voice so that I could better understand him. He also could have offered to write things down on paper for me. He is the professional, I am the patient and I believe he has a higher standard of care when he is treating someone who is "disabled." I do not identify myself as "disabled" but am "hearing impaired." Also, prior to going to any "new" physician, the physician is required to know enough about my health prior to the appointment, and I had completed a questionnaire months ago outlining not only my need to see the dermatologist, but also documenting as much as my medical history as I could on the form I was sent prior to the exam.
In the RARE event that I ever see this guy again, I will simply revert to ALS of which I am very proficient, having learned as a result of a friend who lost her hearing. I have also had a "hearing dog" which died last year, and she too knew many "signs." In any event, I have to disagree with your analysis of my experience, and that is okay.
I spent several hours at Sutter just yesterday and there was not one clinician wearing a mask, with the exception of the phlebotomist, because I had to hand her some specimen containers.
I am aware of many "apps" but not all of them are a good fit for me. In fact, during COVID my hearing aid broke, and I was without a hearing aid for quite a long time before I met a woman named Betty who owns Avalon Hearing Aid Center in Sacramento where I live. If you are interested in seeing her or learning more about the deaf and hard of hearing, I suggest that you watch a program on YouTube, "The Power of Silence." It is a remarkable 30 minute film about the difficulties people like us have when trying to communicate, and I attended the showing of this film with Betty at the local public broadcasting studio. Betty has a program in which she "adopts" those who cannot otherwise afford a brand new high tech hearing aid like the one my sister has, and she sells refurbished hearing aids to those like me at a very reasonable price. If not for Betty, I would still be without a hearing aid, and I am very grateful to have met her via my sister who refused to help me out.
I editing a large part of my experience when I initially arrived at the dermatology office because I did not feel it was important in terms of my "overall" experience; however, suffice to say that after I told my PCP about this doctor, he said to me: "Did you report him. That is terrible."
The doctor was an arrogant person to say the least, and I do not feel I did the wrong thing by giving him all zeros.
I think it is great that you are an advocate, or rather teach others to advocate for themselves. As you are new to this platform, you don't know a lot about me or the medical conditions I have or the advocating I have had to do just to get to the right specialist. In fact, if not for this platform I probably never would have gotten the nerve to advocate for myself, and many of the mentors know this about me.
I commend your work, as it is very important for one to learn to advocate for themselves, as I do. If I have offended you in some manner with this response, it was not my intent, but admittedly it did strike a nerve.