I can usually tell…a little too late…when I have done something stupid.
For me, it usually takes the form of agreeing to some seemingly innocent request. So, when I agreed to do a simple 5 minute talk for a local conference… well, that seriously should have sent up some red flags…
I honestly thought when I agreed to do an Ignite Series five minute talk that it would be a no-big-deal-thing for about 25 people… So imagine my shock when I went to the venue and found nearly 200 people in the room!
Oh, yeah, and did I fail to mention that the talks were proposed as abstracts online and then selected by popular vote to get this honor??? I know, it is a computer engineering conference, but I proposed one of my touchy, feely topics on disabilities and empowerment and stuff like that…so I figured that alone would get me out of it, right?
Great plan or so I thought…
So naturally, my proposal got the second highest votes only behind a talk on the topic of “sexy computer code”…obviously a hot button for programmers. Which meant I would be doing my little talk in front of God and everyone. It had better be good.
Now, I have given probably hundreds of talks in my career, but seriously…nothing really prepares you for a five minute Ignite talk! You can only have 20 slides put on a 15 second auto timer for your five frenzied minutes… The slides fly at you out of no where and you just hold on to your own talk for dear life!
And to make matters worse, the talks were being billed like five minute versions of the Gettysburg Address! So in a panic, I borrowed…ok, stole…from my own blog! I used the main theme from my “In Honor of One” blog about the tragic autism epidemic that we currently face in the United States, and probably worldwide…
Let’s start with a simple question…I thought…
Innocently, I asked my cozy audience of 200 engineers, programmers, and designers to raise their hands if they knew of a friend or family member with autism. Even though I know that 1 in 110 families are affected…nothing can prepare you for actually facing the sea of hands that I saw in the air at that moment. I remember hearing my own trembling voice say into the microphone, “oh. my. gosh. look at the hands…”
The moment just hung in the air.
I had prepared my slides, prepared my talk…but I had not prepared myself for the reality of the impact that just one chronic illness can have on so many people. As I gained my composure, the magnitude sunk in. I still feel honored to shed just one more small point of light on something as profound as autism, as well as other cognitive disabilities.
Let me share with you the talk that I shared with them…
“I’m so sorry Mrs. Satterfield…”
She never even said the a-word
but sadly, 1 in 110 parents will silently hear that word…
but, uh…we could go to speech therapy, right? there are things we could do, right?
We’ll get well, right?
…autism, epilepsy, sensory disintegrative disorders, apraxia of speech, ataxic gate, slow spike wave patterns in sleep, blah, blah, whatever…
honestly…
it doesn’t really matter what you call your cognitive disability, does it?
but, what if there is another way of thinking about this…
what if disabilities aren’t disabilities at all…
what if disabilities are just part of the human experience?
What if people are just naturally unique? How would we as engineers, programmers, and designers…design for uniquely normal people?
hmmm, well…
emotional and social considerations would be really important, I think…
and…it would probably be important to know the range of things that people are actually capable of doing…
oh, it would also be good to know what people really enjoy doing!
and, admit it…
we want to look cool, sexy, and smart in front of our friends. ; )
So, people with disabilities want the same things that all uniquely normal people want?
yes…only better.
Wow…this is going to be a bit tricky.
And it may even require some *sigh* collaboration.
So, what if…
we brought together a group of thoughtful, committed designers, engineers, programmers, therapists, doctors, parents, teachers, friends, and citizens..
Could we change the world for uniquely normal people?
yes.
indeed, it is the only thing that ever has.
~
Thank you, Ignite, for the opportunity and the honor.
Respectfully dedicated to all who have been forever changed by a person with a cognitive disability.
http://www.igniteames.org/2010/ * http://igniteshow.com/
“…hmm, that can’t be right,” he said, as he stared intently at the LED display.
I watched as the doctor passed the wand slowly across my son’s chest. Again. And again… and again… I have seen this procedure many times before and have come to expect the multiple passes and frustration…today was no exception.
“My readout device is malfunctioning…I rebooted it, but…hmm,” he said, this time with a cell phone in his hand.
Our seizure control device was implanted in June of 2007. Less than 3 years ago. Actually, I can’t even remember the exact date. Trauma can do that. But I remember the feeling of dread. And I remember that my doctor wouldn’t look at me that day as he shuffled the pages of our EEG printout. And I remember the words “I’m so sorry…” once again filling the room and just hanging there as the gravity of the situation came over me.
That was one year after our major brain surgery. But, as I have come to realize, seizures are truly the gift that keeps on giving. So right then, in an emergency surgery, all alone, in a hospital thousands of miles from our home, this device was implanted to control an unexpected recurrence of seizure activity in the T4 site… the exact opposite area of our resection a year earlier in T3. When faced with extremely limited options, I guess you take what is offered.
And, like many things in medicine, whether the solution works well or not, you are expected to be grateful and just give thanks that you are not dead.
And, in honesty, we were grateful that we were not dead. It just seemed like with this device there had been a compromise made without much chance for dialogue. And as can be expected with epilepsy, we continued to have minor seizure breakthroughs. Not life threatening anymore…just the kind of reminder that never let’s you truly forget the haunting reality of severe seizure disorders. But now, we had the security of our implant, a technological security blanket of sorts. And to some degree it is a miracle. You have a seizure, you wave the device over your chest, and that’s it. Nothing to worry about. Except for that troubling image from the office.
I guess because I am a designer, I could never get past the image of my doctor passing his readout device over my son’s chest again and again. “…let’s try it again,” he’d say. “Roll on your side, remove that heavy shirt…hmm, ok, I think it’s connecting… hmmm, roll him over again…” But what bothered me the most, was that unlike my doctors’ readout device, my device had no feedback mechanism at all. There was no way to tell if the implant received my signal or not. And I never saw any evidence that it did. But, the company probably thought that it didn’t need one. A person without any cognitive impairments can tell you that the device is working because they can feel it. But many people who have seizures have other disabilities, as well. And, when you have a seizure you are often times unconscious. And… what about the many, who like my son… can’t talk at all?
I wrote a letter to the company detailing my concerns… because after all this was a seizure control device.
That was two years ago. I am still waiting for a reply. But last week, after less than three years of working life, the readout said “Low Battery.” And interestingly, when contacted, the company suggested that perhaps the child’s mother had used the external activation device too often. Mother’s do that, they said. And naturally, that would deplete the power source… The doctor momentarily covered the phone with his hand, looked at me and mouthed the words, “Did you?”
“No,” I replied emphatically, “I told you it’s a piece of…”
But before I could finish, he turned back to the phone and said, “No, she did not.”
Later we found out that using the higher, more effective frequency settings…the ones that actually control seizures… dramatically reduce the device’s battery life. In hindsight, that would have been good to know.
And the documentation of this phenomena is in the doctors’ device manual. Buried in a subheading about specification and power supply and split between two pages and discussed in vague “power’s of” reduction terminology…Engineer talk. Not doctor talk. And definitely not plain talk.
We all know that marketing is marketing. And advertising is meant to sell stuff. But the reality is that a medical implant is dramatically different than laundry detergent or toothpaste or a sports car. And if the alkaline batteries in your flashlight don’t last twice as long, we just accept it and move on. But changing the batteries in your flashlight doesn’t require a second surgery. And yes. It is a minor surgery, but then again, surgery is only minor if you are not the one getting it…
My doctor said that maybe after we change the battery, he will re-evaluate the settings… But, given what I know about the higher settings and the effectiveness of the seizure control, I would make the same decision I made before. But, next time, my doctor and I will make the decision with eyes wide open and with complete disclosure. Like intelligent people make decisions. The way we should have been allowed to make the decision in the first place. Empowered with knowledge and treated with respect.
Personally, I think it’s time to raise the bar… and time to remember why quality matters… and why integrity matters. Especially in healthcare.
I haven’t told my son yet about the surgery. Maybe he knows? I’m not sure. But in about eight weeks, he and I all alone, thousands of miles from home, waiting in pre-op for the IV and the prep and the sedation…will wonder why no one cared enough to tell us the truth.
I called the clinic today, “…yes, I know it’s just a minor surgery, but please can you give us the earliest surgery time?… yeah, I know…but he gets so tired and so hungry and so miserable if he has to wait all day… please?…he’s just a little boy and he doesn’t even understand why…”
“You’re close enough, you could drive there,” she said.
So nine years ago, at the suggestion of doctor that I met only once, I made the choice to repeatedly make the six hour drive to Chicago to one of the nation’s top pediatric neurologists and epileptologists. However, this is not the norm among parents of chronically ill children…and even though my son’s condition continued to worsen, my choice to seek outside help was considered radical. There was a feeling that I was a prima dona…local physicians were not good enough for me…I had to have a fancy city doctor… I stopped going to support groups. I mean, seriously, who needs that type of support?
I have never regretted my decision to seek excellence in healthcare. Never.
This decision truly saved us from an uncertain and frightening future. But nothing lasts forever. And after years of treatments, setbacks, successes and a life-saving brain surgery, my Chicago doctor joined a California hospital. Thankfully, we were invited to transfer with him into his new practice. It’s still about six hours…just by a different form of transportation. And even though I have flown this route ten or more times now, I never start the journey without a sense of fear. Fear that we won’t make it there…fear that we will have a layover and run out of medicine…fear that I have not packed enough special food for my son’s seizure control diet…fear that my non-verbal son will get lost or separated from me…fear that this time they won’t accept my out of state insurance…fear that we will be ridiculed by strangers. Stupid things, I know…but some of them have happened.
But, I have figured out ways to make it work…like what to pack, how to go through TSA security safely with a child with disabilities, and how to make friends to help us along the way. And I realize now that what we were doing was innovative. So before technology was an established part of medical practices, my physician used out patient EEG services, phone calls, faxes, and e-mail as ways to cut costs, stay connected, and improve service. This was nine years ago… way before it was cool to be techno-savvy and practice distance medicine.
And we found that there are little things that make it work better.
As a patient, I learned what my physician needed of me…things like remembering to draw labs-as a trough- before my appointment and fax them to his office. Or things like learning to coordinate with the local pediatrician so that we all learned to work and play well together…as a care team. And learning to be a good observer and an accurate reporter. When working at a distance, you are the eyes and ears of your doctor. And its important to establish a high level of trust and accountability…on the part of both of you. And when it works…it really works.
You become a team…a care team. Equal partners with a common goal. A shared vision.
I came to realize that the quality of a doctor patient relationship is not measured by your proximity to the clinic but by your trust and this shared vision. For my part, I needed to prove that I was sincere and worthy of this responsibility. My physician had to have the faith to know that I would do exactly what needed to be done…whether I liked it or not. And truthfully, often I did not…but I did it, precisely according to directions, and he knew he could count on that. Always.
Looking back, its hard to believe it has been nearly nine years.
I know that finding the absolute best physician and building a rock solid bond of trust and mutual respect saved my child’s life. But it was not obvious at the time. It was a shaky faith built on fear and desperation that eventually lead to trust and admiration. And the knowledge that as a care team we did what neither of us could have done alone…saved the life of one child. One child who will never know how close he came to death…but was saved through the faith of two people, a patient and a physician, acting as one.
It is so important to believe in people.
A couple of weeks ago, I was faced with one of those uncomfortable moments for a parent of a child with cognitive disabilities. There in my son’s backpack was a stapled sheet of paper with the words “Models and Designs Project: Sixth Grade Science.” I stared at the words in dread. It’s no secret that the school seems to be tailored to the good kids, the kids who get good grades, the kids who make the basketball team…
What could my son possibly do that would not be a dismal failure?
Assignments like this seem particularly designed to show off our inadequacies. But, that would not make the assignment go away… so slowly, with skepticism, I scanned the list titled “Project Options.” There were six suggested options including things like “invent a household device”, “create a musical instrument”, and “create a self-propelled vehicle.” I knew that being a designer maybe I could concoct something for these areas, but no one would ever believe that my son could do it… even with help.
Suddenly, I saw it… “create a piece of artwork using a medium of your choice”…
Oh, thank God! We’re saved! As a graphic designer, I’ve taken a lot of college art courses… and this project was one that John could maybe do… with a little help. They won’t be great, but we can make some paintings with some old tempera paint from the closet… and my colleague in fine art offered us some nice Arches paper. But even so, in all honestly, I never expected what would happen. My son, who can’t talk, has barely written more than his name, and who has severe impulse control and attention issues… sat quietly, mesmerized by the act of painting.
But what was the most shocking, was that he painted like a painter. Not like a 12 year old kid with cognitive disabilities… but like a painter. He would move the brush across the page and deliberately make marks with the paint… bold, amazing marks. What’s more, the compositions were balanced in form and color. As he painted, he would sign and vocalize with regard to the colors that he was using… and gently tap his foot to the music on his i-pod.
In his final science project report, I quoted the philosophy of the famous art critique Clement Greenberg. Greenberg said that painting was about understanding and using the properties of paint — things like texture, viscosity and color — as a form of expression. Artists such as Jackson Pollock, Willem de Kooning, and Robert Motherwell championed this new form of art which they called abstract expressionism. Just like those painters… my son’s thoughts and emotions — which had never been spoken in words — were given form through the visceral properties of paint.
One science project, so loaded with the potential for failure, suddenly opened up tremendous hope.
Painting #7, Tempera on Paper
But I was the one who learned the most important lesson… even in my own son, I had only seen his disabilities… never a possible ability. I had been filled with dread over what his future might hold… or not hold… the mindless sorting and cleaning work relegated to people who have no future. But in everything there is a lesson and in this science project the lesson was that everyone has potential. I guess the purpose of this take home assignment was to let parents tap into the tiny, unformed dreams in the minds of their children.
Fortunately, my lesson came at just the right time. My graduate students are brainstorming and designing what I call enabling technologies… Information technologies for persons with cognitive disabilities. We are targeting people with things like autism, epilepsy, or Alzheimer’s Disease… and talking about the impact of age, culture and gender… and the role of style and beauty… what makes this technology cool? In essence, the kind of technologies that empower people and extend their abilities in ways that give them greater independence, increased safety, and a better quality of life. The kind of things that make us feel really good.
Everyone deserves that.
PDD-NOS. What a curious, non-term.
It’s been nearly 10 years ago, but I still hear the conversation ringing in my ears. I can see the room… and I still hear myself saying “but he’ll get well, right? We can go to speech therapy, right? There are things that we can do, right?…” She wouldn’t look at me. I remember hearing, “I’m so sorry…” as she pulled out a bland looking medical brochure. I stared blankly at the word autism. She never even said the A-word. She didn’t have to. In the background a nurse was preparing to collect blood and urine samples… but why do tests, when you don’t have a future?
Stunned. We left her office. Clearly there was no reason to stay.
It was discovered, 2 long years later, that my son didn’t have autism at all…not that it matters what you call your cognitive disability. But this experience living as an autism mom will forever affect me. Like those moms, I will never forget that first eternal moment.
Sadly, 1 in 110 children and their parents will share this moment.
But some things just are what they are. They don’t get better, you just have to move on. The reality was that my son had severe epilepsy. His doctor assured me that epilepsy was better than autism. How lucky. …thankfully there was no brochure.
Since that time, I have devoted a lot of effort to improving the quality of life for people with cognitive and developmental disabilities. It helps to think that your own loss could somehow have a purpose, I guess.
Ten years is a long time. A long time to live with cognitive disabilities. A long time to think about why things happen. But it is also a long time to devote to making a difference. Just last night, a group of graduate students made a difference. Their project, a device to assist children with autism, was selected as one of the top submissions to the prestigious SIGCHI student competition.
I know. It’s just one project and just one competition. But it honors the 1 in 110 moms who will leave a doctor’s office in tears. And it sends the message that all people are worthy of good design.
Have you ever had a bad idea? I mean a really, really bad idea?
In design, we are always seeking that allusive transformational idea. The one that will change the world as we know it. But, for most of us, bad ideas seem a bit more plausible. Good ideas are ok, but they just don’t move us… But, if an idea is really bad, someone has to do something. It sort of serves as an innovation ice-breaker.
So in a sense, bad ideas really are the mother of invention.
In both teaching and research, bad ideas are critical to the innovation process. They are often the first step in a chain reaction that will hopefully lead to that miracle break through. The same is often true when we collaborate across disciplinary boundaries. I have often been struck by the fact that what is a huge problem in one discipline is easily solved by another. The problem is that we don’t cross these boundaries often enough to realize that the solutions are out there.
And to make matters worse… what seems to be a really bad idea for one situation, is probably just the solution to different problem.
So our task in healthcare innovation design is to match solutions with their problems. Fortunately, in design we tend to see the world in the context of a continuum rather than as an absolute. In this regard, when we test our design solutions we are not trying to determine if they are good or bad… we are trying to determine for whom they are good and for whom they are bad.
In healthcare all problems are complex and all problems have many variables and multiple constituent audiences. This complexity often results in systems that work well for one group and not at all for another group. Therefore, the question is how do we meet the needs of multiple constituent groups? The complexity of the problem dictates that their will be a complexity to the solution. But people are complexed. There is hope that when people from completely different disciplines and completely different backgrounds come together… in unlikely combinations… amazing things can happen.
I know when I came to medical experience design I didn’t know anything about the field of medicine. I couldn’t even look at a needle without feeling faint. But out of unlikely situations innovative can emerge. And for me, my lack of experience became the experience I drew on…
and maybe, just maybe, bad ideas are not so bad after all…
In experience design we talk a lot about user-centered design, usability, and participatory processes. And these things are truly important. We need to be aware of them and to respect the richness that they add to the design process. But one of the things that interests me in experience design is advocating for the people who can’t participate. Those people who don’t get invited to the table where the decisions are made.
Our society seems to revolve around the wants and needs of a few select people.
Wealth, power, connections…to name a few, will make the cut. Unfortunately, many people will never be in this select group of influencers. I saw this while spending great periods of time in the hospital as my child’s attendant caregiver… People who don’t speak the language, people who can’t speak at all, people who are not able to be an effective advocate for themselves for a variety of reasons…were at a distinct disadvantage.
If you can communicate you have rights, you have a say in your own destiny.
Interestingly, if we slow down the pace of our lives and listen closely, even those who seem least able to communicate often have something very meaningful to say. Yesterday, I took an hour out of my day to do client satisfaction surveys with three young adults with MR for a local group home. These amazing young people invited me into their living spaces and told me about their daily lives. They used what spoken language they had, if any, and added to the richness of the communication with gestures, sounds, expressions, and touch. My goal was to determine if they are well-adjusted and happy… and to get to know them just a little bit.
Ironically, compared to the people that I am surrounded by everyday, these young people were incredibly happy. Now, mind you, they were not without concerns- which they emphatically shared with me- but overall, they were happy. Not just happy for the moment, but happy in a larger sense.
I listened intently to pull out the stories that they were telling me through heavy speech impediments and limited vocabularies. I was hugged more times in that hour than I have been hugged in the last year…and I had my hand held and placed on their hands or heads to tell me that they wanted me to reciprocate their gestures of acceptance and joy. They were delighted to share their stories with me. And happy with their lives.
For those of us who are involved in medical experience design and healthcare innovation, it is good to be reminded of the whole scope of people that are beneficiaries. And to keep in mind that each of these groups of people are worthy of good design.
At times like this I am reminded that a shockingly large number of people with cognitive and developmental disabilities go without adequate medical or dental care.
It is also important to note that many of us at some point in our lives will suffer a permanent or temporary cognitive impairment. When we design medical experiences for all people regardless of their cognitive abilities, we design medical experiences for ourselves and our loved ones. Yet, these young adults, who so eloquently communicated to me through their personal languages, will never be part of a marketing focus group. But perhaps they should be.
I have been thinking a lot about emotions this week. Well, more precisely, have been experiencing a lot of emotions this week. On January 22, one of my students disappeared from the Iowa State University campus without a trace. The police have no idea what happened to him. And, no one noticed his absence for eight days…we just went about our business, doing what we do as students and professors. It leaves us all with a sad, haunting feeling…
Everything seems to begin and end with emotions.
When I started working with medical experience design it was driven by the feeling that this was not typical marketing. Medical experiences, as I had so poignantly experienced, did not strive for that happy nirvana that seems to be the goal of most marketing campaigns. Medical experiences encompass a complete range of emotions.
But it was one of my good friends, a highly regarded pediatric specialist, who said it best, “One of the biggest problems I face is parents who can’t manage their emotions..” Because of the extremely complicated, high-risk nature of the conditions that he deals with, he was constantly trying to cope with patients who could not manage feelings such as fear, anxiety, or anger. People who have every right to be mad. Every right to be afraid. It was then that I realized that as a designer I could maybe design information, environments, artifacts, or communities that could serve as a mediating device to help people manage these emotions.
We all have a right to our emotions… not to be a slave to them, but to experience them and to process them in our own ways.
Medical experience design is not like a branding campaign for a new designer perfume. It doesn’t bring with it a lot of sex-appeal. But, maybe medical experience design can help us manage our feelings. One thing I know all too well is that not everyone will get well, but everyone can be empowered with trust and dignity.
Experience design has greatly expanded the definition of what it means to be a designer. For me it was liberating to know that it’s ok to design everything. It reminds me of Howard Gardner’s concept of the multi-disciplinarian. But, Gardner goes on to make the point that very few people dedicate themselves so thoroughly to more than one discipline to every really make it to the point of thinking in more than one domain.
Ironically, we never really question how we think…
Often times, we don’t truly realize how much we have been molded by the prevailing thought processes of our disciplines. This is constantly at the core of teaching experience design to a mixed class of engineers and designers.
On the surface we seem very similar, similar goals, and often, similar outcomes…
But the devil truly is in the details. I have learned that I have to teach within the thinking paradigm of each student… at least for awhile. When researching education theories, I read that in order for a student to learn information you have to understand and adequately address their previous knowledge. You need to know if any previous knowledge will conflict with the new information. For instance, when you teach a child to count they learn that numbers have ordinal values. Then later, you try to teach fractions. And the trouble begins… Your student knows that 4 is bigger than 3, but mentally has a conflict when you say that 1/3 is greater than 1/4. And unless you confront this seemingly conflicting set of facts, many children will be confused for years.
The same is true for my students from different disciplines. Often times our ways of thinking are at odds with each other. But I have found, that if you can trust people from other disciplines and learn to appreciate their differences, much can be gained. And we can all learn from the experience.
When designing for healthcare, we need to learn to embrace the differences in each of us in order to see things from a new perspective.
I just heard about the new movie about the life and work of Temple Grandin. I have read many of her books and was greatly influenced by her research. In “Thinking in Pictures” she gives us a wonderful account of what it was like to grow up with autism. Her unique ability to articulate her experiences and put words to what so many children and adults with autism spectrum disorders (ASD) cannot do…
We needed to hear Temple’s story…
I have had the unique opportunity to go to dinner with just Temple and another one of my colleagues at ISU on two different occasions. It was so amazing to discuss her research with her directly.
As I do my work in the areas of design for behavioral change and design for social inclusion, I am constantly inspired and moved by the grace and dignity of the people with cognitive and developmental disabilities that I serve in this research capacity.
Truly, Bruno Bettelheim needed to have the opportunity to talk with Temple Grandin.
For me, it was never about the research…it was and is only about the service.
Temple’s Interview:
http://www.npr.org/templates/story/story.php?storyId=123028845