April 5, 2023 - by Jennifer Ringler, MS
“Imagine discussing vision loss with your doctor and being told there’s nothing they can do. You’re basically told, ‘Get your life in order because I have nothing that will stop you from losing your sight.’ You know that your world is closing in on you. There’s a sense of hopelessness. The things you do every day – reading, seeing loved ones, and watching the most important moments in our lives – gone.”
This is the language the CEO of a former biotech client of mine wanted to put in an article, with their name on it, in a prominent trade publication. Thankfully, I live with a rare vision disorder (not the one this company was creating therapies to treat), and I was able to offer the patient perspective, provide sound counsel, and stop the presses before this language went live.
I was born with optic nerve hypoplasia (ONH), a rare disorder that affects about one in every 10,000 people in the U.S. What’s the difference between a disease and a disorder? A disease is a particular process in the body with “a specific cause and characteristic symptoms,” while a disorder is an “irregularity, disturbance, or interruption of normal function.” (How do I know this? I looked it up. Why did I look it up? Because I’ve spent about 25 of my 40 years on this planet learning everything I can about my disability.)
What my disability means in my personal life is that I don’t have a driver’s license, and I get really angry when my favorite TV shows use small subtitles when someone is speaking in another language, because I have trouble with distance vision. I’m also completely blind in my left eye as a result of my ONH, so activities that involve depth perception (think tennis) aren’t my cup of tea.
What it means in my professional life is that I bring a unique perspective to my clients and projects when they’re talking about, or to, patient populations. And if I can use that perspective to educate marketing and comms professionals and C-suite executives in the pharma and biotech industry about what (and what not) to say – helping them reach their business goals, connect with their audience, and perhaps develop some extra empathy along the way – then I call that a win-win.
When I read that proposed paragraph about vision loss for the trade article, I had an immediate, visceral reaction on a personal level. I thought, “Get my life in order? Am I dying? Hopeless? Blind and visually impaired people read, spend time with loves ones, and experience important and joyous moments in their lives every day.” As a person with a disability, with decades of cumulative moments of people not understanding – or seeking to understand – my lived experience, my gut reaction was to be deeply offended.
But as a healthcare communications professional, with decades of experience helping life science companies and executives find their voices, tell their stories, and reach their audiences, I knew I had to explain why this language was problematic, why I personally knew it was problematic, and what they should do instead. So, I took a deep breath, buried my deeply rooted fear of being judged as less-than for my disability, and “came out” to my client.
I explained that I have been blind in my left eye and have had limited vision in my right eye since birth. I explained that if they were trying to raise awareness among prescribing physicians, and eventually patients, about a therapy for vision loss, saying that the visually impaired should basically “get their affairs in order,” that they were “hopeless,” and that all the joy and significant moments in their lives were “gone,” was not the way to do it. This will alienate and offend your potential customers, I told them. This will encourage misperceptions and ableist language among healthcare professionals, I told them. Visually impaired people love to read, spend time with loved ones, and experience important moments in their lives, I told them. We are parents, spouses, professionals, children, siblings. We read, laugh, run, dance, graduate college, grieve, celebrate, learn, and love. Our lives are as sad and as joyful as anyone else’s, and we certainly don’t feel empty or “hopeless.”
Thankfully, my clients heard me with open hearts and open ears. They were receptive to my feedback and thanked me for offering such an important insider perspective, and together, we settled on some language that was able to better walk the line between showing how their company offered hope for a disease with unmet need without saying that their patients’ lives were “hopeless.”
There have been a few other instances where I weighed in on messaging about people with disabilities, disorders, or chronic diseases. I advised one client to stop calling a group of people with a chronic skin condition “inspirational” in their web copy. “People with disabilities and chronic diseases don’t want to be called inspirational,” I told them. “We’re not an inspiration for getting up and going to work every day, raising our families, making dinner, and so on. We do it because we weren’t given a choice. Our personal circumstances do not exist to serve as your inspiration.”
I try to use my voice as a disability advocate with colleagues and leadership teams in my professional roles as well. I have suggested that colleagues send presentations or documents around a few minutes before a meeting – every time – so that the people who may not see well can zoom in, print it out, use text-to-voice, or otherwise adapt instead of struggling or being completely left out while someone is sharing a screen. I’ve mentioned to peers and design/creative teams that PowerPoint slides should always have 12-point font – at minimum – and that putting the same amount of information on two slides instead of one, so you can increase the font size, doesn’t make the presentation any longer to talk through. I remind people about contrast, I adjust the font size settings in my Outlook inbox, and I call out cute little corporate videos on social media that have images, text, and uplifting background music but no voiceover.
I didn’t decide to work in health communications because I have a disability, but it certainly doesn’t hurt to be able to bring the patient voice to the table.