In my last post I spoke of a momentum I've been feeling around the idea of better design in the medical realm. The more I think about it, the more I think that something's afoot in the greater world of medicine and design. Something's definitely happening and I'm pretty excited about it to say the least.
Consider what the architect Michael Graves said of his first impressions of the hospital he found himself in after he became paralyzed and wheel chair bound in this Metropolis article written by John Hockenberry: "He likes to tell the story about how during the worst days of pain and uncertainty he pleaded to anyone who would listen not to let him die amid so much ugliness. After a lifetime of seeking beauty in everything he designed and obsessively making sure every detail in his physical space was selected to be purposeful and beautiful, he was suddenly trapped in a world of mundane medical objects. “Everything was ugly,” he says. “Nothing was designed. It seemed as though the makers of these objects never had to use them. There was no color, no style; nothing about any of the objects said that a human had made them. It was outrageous.” Graves said he once had his doctor come into his hospital bathroom, where he was trying to shave from his wheelchair: “ ‘Who designed these bathrooms?’ I asked him. He said, ‘Experts.’ I said, ‘Oh, really,’ and I had him sit down and look at himself in the mirror, which was too high, and then turn on the water, which was out of reach. It took him two seconds to get it." Graves, at another point in the article, articulates beautifully something that gets to the heart of the issue of design in the medical realm: "People who become disabled have to radically redesign their outlook about the physical world. They redesign their sense of privacy and their sense of independence. Yet in the products they have to use, design has abandoned them."
Amen.
Or consider what Virginia Postrel so beautifully articulated in this recent post (where she also kindly linked to a recent post on aiming for grace): "The more I think about the sorry state of health care aesthetics, the more I think part of the problem is that we have an "acute care" model of medicine in a world where chronic diseases are increasingly the rule. If you only go to the doctor occasionally, you won't care nearly as much about how things look as you will if you're spending a large part of your life in clinics of various sorts. The same is true of medical devices. A diabetic who uses a pump all the time for life will benefit far more from something that looks good than someone who has a one-time, or even short-term, encounter with some kind of medical gizmo." So insightfully put! Design matters more when you have to interact more with designed stuff. Especially when you have it interact with it 24/7. Especially when you have to use the stuff to live. Especially when you have no choice.
Amen again.
What occurs to me is that all this talk, this momentum if you will, is a result of a number of interesting, converging factors beyond the simple conversation about design. The first factor, and in my mind the biggest, is an idea I've touched on before after reading Jill Sklar's great book. When you look at the long history of human life and disease, the state of chronic illness is really a very new thing. Before the last century, people pretty much got sick and then they died. These were the times before antibiotics, insulin, vaccines, widespread understanding of hygene. These were most certainly the times before the internet or the human genome project. In the context of human history, the last 100 or so years are but a blip, and the state of living a life with a chronic illness is really a thoroughly modern phenomenon. It's an unprecedented, revolutionary thing. Science has made this modern state possible, but as is often the case with life altering innovation or breakthrough, the cultural institutions of the society, the technology surrounding the science and the realm of design, all follow behind.
The idea and experience of chronic illness is "new" when looking at the big picture of human history. Yet, as Virginia Postrel mentioned in her post, we live in a time where living life with a chronic illness or condition is becoming more commonplace. Again, thanks to advances in medicine and science, we are living longer than ever before in history, meaning that most people will be managing some kind of health condition at some point in their lives. An article by Thomas Goetz from yesterday's NY Times magazine put it perfectly, "As we learn more about disease and are able to identify it earlier, more and more Americans will fall under the rubric of 'patient'". Or as a woman quoted in that same article says, "Pretty much everybody I know over 45 has some kind of medical condition. Some people have had cataracts surgery, or they have high blood pressure, or high cholesterol or diabetes. Everyone has something. And if everyone has something, that really levels the playing field." The sheer weight and volume of more people living in that state of being, also contributes to a new awareness of the issues people with chronic illnesses face. I would posit that the result of this fact is an emerging awareness, a new sense of urgency and most importantly, a higher level of demand for a better experience around life with chronic illness.
Another key factor in this possible new momentum is of course the internet. At it's best the internet connects people who are sharing an experience such as chronic illness, allows them to share information, insight and feelings, and over time, amplifies their voice in ways never before possible. I know that's happened to me personally in writing this blog. At first it was such a revelation and joy to find others who knew the strange world of diabetes that I inhabited. Then over time, I found my voice change and become stronger as I not only understood that I wasn't alone in my journey but that my feelings and ideas about that journey were valid and true. My view of my experience became more real and as it did, my ability to analyze it and express it with some distance and clear insight got greater. For years I was stuck in the isolated and singular place of being one person with a chronic illness, lonely and struggling to fit in to a "normal" world I was no longer a part of. Thanks to the internet and blogging, I no longer feel alone and I now have a new philosophy about normalcy. A new normalcy. My idea of this new normalcy is defined by being whole with disease, rather than feeling less than whole because of it. I can't help but think that this personal journey is happening all over the internet, between blogs and forums like the diabetes OC, tudiabetes or diabetes daily, and media channels like dLife, and open source medical information websites like PatientsLikeMe, to name just a few examples. All these isolated, single individuals experiencing chronic illness, disease and physical limitations, are now starting to collectively add up to an amplified picture, source of insight and in the end, a much harder voice to ignore. It's definitely getting louder out there!
Given all of these factors, the relative "newness" of the chronic illness state in society, the fact that more e people are living in this state of chronic illness thanks to the advances in medicine and science and the compounding, amplifying ability of the internet, it feels like times just might be beginning to change. This convergence of factors might mean that the experience of disease will be considered as important as the science of it. It might mean that a new definition of normalcy can emerge in the process of this evolution. The momentum around new normalcy and better design and patient voice feels real to me. It feels hopeful and progressive to me. It feels like there's certainly a lot more noisy conversation on the way. And that can only be good in the long run.
