by Melanie Peskoe, VisionAware Peer Advisor
My Experience with Healthcare
A few times in my life when I’ve visited a healthcare facility or doctor’s office, I’ve been met with a less-than-ideal reception. It might start with the person at the front desk who asks me if I have someone with me to help. Sometimes I have someone with me to help; more often, by choice, I don’t. I prefer to go alone. As long as I have my white cane to both alert me to obstacles and identify me as someone who is visually impaired, I feel pretty confident that I can manage fairly well. However, I was thrilled when I found out about the new American Foundation for the Blind (AFB) Healthcare guidance and training resources developed as a result of their research to explore barriers and challenges that people who are blind, low vision, or deafblind may encounter when seeking healthcare. Please read more about these resources at the end of this post.
How I Cope
Typically, when I walk into a facility or office, I ask the receptionist for assistance with signing in. I already have my identification and insurance cards ready to hand over when they are requested. Once I’m signed in, if needed, I will ask for assistance finding a place to wait. When my name is called, I will stand up, unfold my cane, and turn toward the direction of the voice. Usually, the person who called my name will come over to me and ask if I need assistance. Either I will follow behind the person or I will take their arm so they can guide me through the halls. Usually things go pretty well. A few times personnel have not really known how to best assist me and it’s in these situations that I have learned how to tell them, clearly but kindly, what I need. Remember my post about self-advocacy and honey? You attract more flies with honey, so be kind even when you want to scream.
That brings me to another thought. Sometimes I absolutely want to scream when I’m treated in a way that is child-like or patronizing. I want to shout that I am not a child, nor am I someone to be pitied. I am an adult who walks, talks, feels, and thinks just like everyone else! Notice I wrote that I want to scream, but I don’t. Ever. I don’t scream or speak rudely to healthcare workers, because most of the time they just don’t know how to best support me. Many people have never met or interacted with someone who is blind or has low vision, so they just don’t know what to say or do. Television has often sensationalized blindness and perpetuated outdated stereotypes to the point that some people expect that someone who is blind cannot live independently under any circumstances. If I speak rudely or shout at someone who thinks they are doing the right thing, I am doing neither of us any favors.
Once when I went to a hospital for an outpatient test, I had an experience that could have ended poorly had I reacted the way I felt inside. In the exam room, I was instructed to remove my clothes and wear a gown they provided. Before the technician left the room she very sweetly asked if I needed help getting undressed. I was shocked, embarrassed, and just mad. I wondered how this woman could think I needed help taking my clothing off. After I took a deep breath, I calmly told her that I didn’t need her assistance. Had I yelled at her (the way I really wanted to in my mind) I would have likely left her with the impression that people who are blind or have low vision are rude and bitter, and I would have likely felt pretty crummy the rest of the day. Holding my head up high and holding my ground, I advocated for myself and that was that. I imagine that neither of us thought much more about her offer after that.
As I have noted, at times I have needed to be patient and explain how a healthcare worker could best assist me. As a result, on the whole my experiences with healthcare have been positive. However, I know that this is not always the case for many people. There are plenty of times when personnel–from the receptionist to the doctor, and everyone in between, just do not know the best way to support patients who have a visual impairment. Often patients who are new to vision loss do not know how to ask for help or how to explain what assistance would be helpful. Thus, I am happy to share the new AFB materials to help healthcare providers better understand how they can best support people with vision loss.
AFB Resources for Healthcare Providers
The resources include some great handouts that can be printed and given to the staff at hospitals, labs, outpatient centers and providers’ offices. The handouts are as follows:
- General: Serving the Needs of Individuals with Visual Impairments in Healthcare Settings
- Guidelines for Ancillary & Support Staff
- Guidelines for Food Service Staff
- Suggestions for Guest Services Staff
- Suggestions for Registration Staff
The handouts are accompanied by two, 20-minute videos to teach healthcare professionals how to help people with a visual impairment to have a better experience. Part One discusses terminology and tools and Part Two describes things healthcare workers can do to improve the healthcare experience with those who have vision loss. These resources can be found on AFB.org/Healthcare, AFB’s one-stop website.
Share These Resources
When I discovered these new resources from the AFB, I emailed my providers and shared the link. I also asked them to share it in their professional networks as well. By sharing these resources far and wide, we have a golden opportunity to expand healthcare workers’ knowledge about how to best support people who are blind, have low vision, or are deafblind.