The Intersection Between Privacy and Accessibility
In this post, A11iance Advocate Ana Jacob talks about the intersection of medical privacy and accessibility.
What if some of the most private, pivotal moments of your life had to not only be witnessed by someone else, but necessitated their involvement?
I’m talking about those sometimes beautiful, sometimes frightening moments that can change our lives forever. Like finding out you’re pregnant, or reviewing important test results from your doctor.
Let’s explore these one at a time.
You can buy a pregnancy test and follow the directions, but unless you can see how many lines show up on the test strip, you won’t know the results. Do you want to involve someone else? If so, who? The child’s father? A family member? There could be many reasons why neither option is possible. Not to mention other medical situations that are far too private for most of us to dream of letting others in on. From a radiologist’s notes on your most recent tumor scans, to reading the results of your latest STI screenings, we too often have to let others into these very private areas of our lives.
We wait with bated breath while someone checks the test strips and tells us if we have conceived. A nurse or office worker reads out loud the invasive questions on medical forms because they aren’t available in accessible formats.
But it doesn’t have to be this way.
So much would change if we, as a society, applied our values around privacy to disabled people. Far too often, having a disability means we are not offered the same level of privacy as others. Not because of the disability itself, but because standards aren’t equally applied.
Thankfully, some progress has been made. Most people are no longer shocked to realize that people with disabilities are just as interested in dating, having sex, and raising children as anyone else. It’s a good start, but it needs to go further.
Ramps at medical facilities and Braille-labeled elevator buttons are usually a given, but accessible forms, including intakes, are rare.
What would it mean to make the entire process — from scheduling an appointment to reviewing lab results — accessible to everyone?
It would mean an accessible website/patient portal, complete with labeled buttons, proper heading use, and clear alt text. And if your organization uses third-party apps like MyChart, make sure you partner with companies that also value digital accessibility.
It also means making every form and screener available in multiple formats, so we don’t need to have someone else read off the invasive questions to us. Not only is this a violation of our privacy, but it’s time consuming for office workers.
Finally, make sure your staff knows how to interact with disabled people in ways that are constructive and respectful. For example, always speak to us directly, unless requested otherwise. I can’t begin to count the number of times a doctor or nurse has addressed the person I was with, instead of me. As if I’m incapable of answering questions about my medical history, or which medications I’m on.
I had this experience recently at my women’s health clinic. After several questions about my health were addressed to the person I was with, I politely spoke up and pointed out that I can answer these questions for myself. The point I made, as tactfully as I knew how, was that if I was seeing my doctor to discuss birth control, surely that illustrates what kinds of decisions I’m already making for myself.
As I have a right to, privately and independently. We all do. Let’s start making that a priority for every one of us.
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