The tyranny of Norman doors

As a person who considers herself often on the threshold — though of what I’m not always sure — doors and doorways catch my attention. They create a boundary between here and there, allowing us to be in one place while looking into another

One particular style of door fascinates me. It’s best summed up in this photo of a door at my office with its many pieces of flair. It has a button with a key on it to show us where to unlock it, and a sign and arrow telling us to do so. There is another lever that releases the lock but should only be used in an emergency, hence the running guy icon. There is also a button to open the door and hold it open, for example if one is wheeling through a cart or wheelchair; this button needs to be held open for a longer-than-obvious period of time, so it too has a note on it telling us how long to hold it. And because we frequently trigger the alarm by standing with the door open too long, there are not one but two signs in English and in Swedish telling us to get a move on. It’s a wonder we ever get out.

Yesterday I learned that this type of door has a name — the Norman door.

A Norman door is a poorly designed door that confuses or even tells you to do exactly the opposite of what you’re supposed to do. It was named after Don Norman, the researcher, professor and author of The Design of Everyday Things, the bible for the field of human-centered design. This video, It’s not you. Bad doors are everywhere. tells the story of Norman doors and the principles behind good design.

It turns out that through their design, objects subtly communicate instructions to people on how they should be used. Certain handles just feel like they should be pushed, and others pulled. Bad design sends us signals that are confusing.

And when things go wrong, it’s usually the user who is blamed, not the designer. Sometimes we even shame the user, as in this Far Side classic. I remember a coffee shop in my old neighborhood that had this panel taped to the door because so many people opened the door incorrectly. But it wasn’t the door’s fault, it was ours.

In the film, Don Norman reflects that “if you continually get it wrong and if other people get it wrong, that’s a sign that it’s a really bad door.”

Swedish designer Sara Tunheden shared the video this week and challenged those of us working in health care to think about the services we deliver and design. Are they really as great as they think we are, or are they Norman doors?

As a person who works within the health care system to improve it, I know I want patients and families to experience health care as a place of partnership, agency, responsibility, power and health. As a patient and family member, sometimes I can get there. Though often the door is surrounded by confusing and unintuitive mechanisms that keep me scratching my head, struggling needlessly, or even worse, locked out.

Good design, according to Norman, offers discoverability (the ability to discover what operations one can do) and feedback (a signal of what happened). For those of us in a position to be offering a health care service, we can ask ourselves some questions:

Are the doors people need to pass through to reach us easy to open, or are they overloaded with gatekeepers and signs in the forms of wait lists, complicated referral or intake processes and inefficient booking systems?

Does the entrance feel truly welcoming for everyone, regardless of race, gender, sexuality, language, intellectual ability and culture? Are people treated with dignity and respect, or as if they should be grateful to have been let in at all? Does the door actually open when the person does all the things they are asked to do? And if it doesn’t, do we blame — or even shame — them for not getting in?

In my experience, we spend a lot of time thinking about what we want patients and families to do, how we want them to behave and act. This isn’t just about access, but even about following our instructions, being engaged, and taking responsibility. When they don’t do that, maybe it’s worth considering that it there may be a Norman door in their way.

Please subscribe, share or comment. I’d love to hear what you think.

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Oh, s*#t

The speech therapist sent over some new communication cards a couple of weeks ago. They are laminated sheets that contain about a dozen icons that our family can use to have better, more focused conversations with my son. Without them, there’s often whining, interruptions and repetition. With these cards, we still do all those things, but we also do a little bit more chatting about the day and our plans for the weekend, specifically whether or not we will eat tacos on Friday night. (Spoiler alert: We will.)

fredagsmys
Communication card for the weekly Swedish phenomenon Cozy Fridays, aka Fredagsmys

This particular pack of cards is aimed at older kids, now that my son is well into his teen years.skit också You can probably imagine my surprise when I see that on the cards is a pictogram for a swear word. “Oh, shit” shows a generic-ish person with a palm to the forehead. Useful for many contexts, but not the kind of language I promote with my kids.

I easily forget that my son is getting older, mostly because he’s physically small but also because he needs help with things that kids his age have figured out how to do long ago. But that doesn’t mean he’s a child in every way. Because he needs my help, it’s also easy to believe that I should be allowed to make choices about things that parents normally wouldn’t–his clothes, his music, his activities, and even his language. People with disabilities have been pointing out how society infantalizes them for decades. I do not want to be that parent, so we laugh and practice saying it together.

There are so many areas where I’m going to be pushed out of my comfort zone. Swearing, friends, alcohol, sex. His body is changing, his needs are changing. He’s getting older, and so am I. Oh, shit.

Overcoming paralysis with a single step

In a recent stress dream, I sat in an airport coffee shop knowing I was supposed to board a plane, but with no recollection of when the it was going to take off or from which gate. Despite being surrounded by information counters and departure displays, I just sat and sat, paralyzed and ashamed, with no sense that there was anything I could do.

Of course, these stress dreams usually occur for a reason.  My son has been getting hurt lately due to an unusual symptom that makes him fall down at sudden noises, and I’ve known for a while that it’s time to do something about it if I want to keep him safe. But the anecdotes I’ve heard from other parents who have kids with this rare syndrome have given me the impression that there aren’t really any good solutions, and each one caused its own negative feeling. The options appeared to me to be as follows: have him start using a wheelchair (makes me sad to think of limiting his mobility on purpose), start on heavy-duty personality-deadening anti-psychotic medication (ugh!), finding a helmet or brace or full body bubble wrap (makes me worry that he will incur even more stares than normal), or collaborating with industry for new applications for existing technology for sound-blocking headphones (makes me feel exhausted just thinking about it), etc, etc. Or I could just doing what I’m doing now, holding my son’s hand whenever he is standing up, even in the house (which is making me feel strung out). So I have been doing nothing, just sitting at the airport waiting to miss the plane.

This morning my husband and I had a quick huddle: I would ask the parent community of my son’s syndrome for their advice, my husband would research headphones. Within minutes of posting my inquiry to the Facebook group (“Help! It’s time! Tell me what you did and help me figure out what to do!”) I had responses. Not perfect answers, but ideas. I realized that many of my fears were completely exaggerated. The drugs weren’t all bad. There was a special walker that could work. The wheelchair wasn’t the worst thing. And most of all, there was company and commiseration.

My recent dream hit all my nightmare buttons: being late, unprepared and disorganized, inconveniencing and disappointing others, appearing and actually being incompetent (two separate but equally humiliating fears). But what really scared me in the dream was observing myself be unable or unwilling to do anything about it, the acceptance of paralysis. Today reminded me that there are plenty of times I’m scared stiff, and that sometimes all I need to do is to take just one small step, especially when that step is asking for help and companionship. Because being afraid is bad, but being paralyzed by that fear is the real nightmare.

Do you have a scary aspect of your child’s care or development that’s got you frozen? What small action could you take that could help you get unstuck–even if it’s as simple as asking for company?

 

Mind the Gap

“What doesn’t kill you makes you stronger,” is a go-to saying in the special needs parenting community, something we say to each other at particularly difficult times when there’s nothing else to say, right up there with “Keep calm and eat this cupcake,” or “Can I refill that wine glass for you?”

At its essence, the phrase is true. In life we all need to make some effort if our muscles, mind, heart and soul are to grow. That’s what gyms, schools, and junior high dances are for. Waking up one morning and realizing that we have grown much stronger than our old self is a beautiful moment, one to be savored.

Unfortunately what the person saying the saying doesn’t always acknowledge is that sometimes, the “what” in the given situation actually can kill you. Or make you want to die. Or harmfully self-medicate. Or just simply disengage/avoid/deny, as was the case for me for several years. (Yes, years.) The effort required for the task is so great that we literally die trying, pass out from the effort, or don’t even bother starting. There’s a reason that there are training plans called “Couch to 5K” and not “Couch to Olympic marathon.”

Mind the gap

Which brings me to my theory about what I call the Gap. On one side is you — with your skills, your strengths, your resilience, your smarts, your capacity. On the other side is what life throws at you — work, relationship needs, illness, a bad economy, whatever. The distance (actual or perceived) between what you can do and what life needs you to do is the Gap. A little gap will make you stronger. A big gap will kill you.

When parenting a child with special needs, the gap can be bigger than expected: more to learn about your child’s illness or treatments, higher costs or lower income, less sleep or time for exercise, less support and connection with family and friends and more expertise needed to navigate a complicated system. Obviously, making the gap smaller is important for our survival and happiness.

If we want to narrow that gap, we can do so by changing: 1. what we are capable of or 2. what the environment requires of us. It’s a lot easier to change ourselves than to change everyone else, so most parents of kids with special needs start with this side of the equation with things like:

  • making getting more sleep a priority
  • exercising
  • eating more nourishing foods
  • meditating, journaling or another spiritual practice
  • becoming educated about their child’s illness or disability and treatment options
  • learning to navigate the system
  • investing time in organizing information or routines
  • connecting with other families with a similar illness or disability or navigate the same system
  • getting support from a counselor, social worker or therapist or taking time to do the “inner work” of special needs parenting
  • making time to have fun or be creative

If we’re fortunate, we have angels in our lives who bolster up that side of things too–taking care of our kids so we can make a call or go to an appointment, dropping off a meal when we’re in crisis, listening when we need an ear or helping us to remember to play.

Over time, we just might find that we do in fact feel stronger. That’s a wonderful feeling. When facing a new huge Gap in the future, there’s a certain confidence that we can close that one too. Often though, it occurs to us that we wish others didn’t have to face quite the extreme Gap that we did. So we start working it from the other end by helping to change the environment by doing things like:

  • raising awareness and creating forums to make it easier for others to find support and information
  • participating in research to improve knowledge and treatments
  • advocating for policy and legislation that make life easier, like improving health care access, more family-friendly work policies, legislation for issues that affect people with disabilities and their families
  • contributing time or money to organizations that help others to increase their skills and capacity
  • getting involved in systems change

What does your Gap look like? How have you become stronger? What are some ways you’re growing your capacity or lessening the burden of the environment to close the Gap?

A gift from the messengers

Special needs fill nearly every thought and moment of my life lately. My mind has become a radio station that plays all advocacy with no commercial interruptions. Health care reform and medical home are in heavy rotation, along with the usual med refills and parent-teacher conference stuff. It’s not universally popular music like the Beatles; it’s complex, dissonant sound that requires effort and courage to listen to. Philip Glass, Rachmaninov and creepy crime drama soundscape rolled into one.

So when I found myself heading to Washington DC (yes, for a health care conference, PCORI), I decided to arrive a few hours early to unplug and reconnect with a passion from my life before special needs—art.

The visual arts have always played a sacred function in my life. Although I love words, I experience an entirely different connection with life when I react to image, line and color. Even when it’s challenging, it feels good.

It was a smart move. Strolling through the National Gallery of Art, I was transported through time and space. All thoughts of accountable care organizations and conference abstracts were arrested for a few moments. But the escape didn’t last long.

The museum’s collection includes a number of fantastic paintings depicting the Annunciation—the moment in the history of Christianity when a messenger angel arrives to tell Mary that she will give birth to Jesus. It’s such a pivotal, rich moment in Christian iconography that there are many versions of the scene in the Gallery’s collection.

The Annunciation is special to me, though not for reasons of conviction. I don’t have a particularly strong faith, more a comfort from stories told and retold throughout my childhood.

The reason the subject is special to me is because this angel, this messenger of peace, is named Gabriel. And so is my son, the one I write about in this blog.

Years ago, when I told my deeply religious aunt that we were going to call our son Gabriel, she replied matter-of-factly, “Gabriel. He will be your peace baby.” She was right. He is one of the most patient, loving, accepting, generous and forgiving people I have ever met.

National Gallery of Art, Washington DC

Even though Gabriel (the angel) is associated with peace, his arrival must have been quite terrifying. No one expects an angel to show up, do they? He’s got to calm people down so that they’ll listen to him. In most of the stories about him, the first words out of his mouth are

Do not be afraid.

So whenever I see any painting of the Annunciation, I first think about Gabriel (my son), his namesake. Then I think: Do not be afraid. And the juxtaposition of those two thoughts always stop me in my tracks.

Much of the emotion I have around parenting Gabriel is fear. Not all, but much. Fear of the future. Fear of not doing or being enough. Fear of doing it wrong. Fear of not feeling the right thing. Fear of being judged for all of it. Fear of never being able to work through the fear.

So there I am, on my little escapist jaunt, riveted by the image of this magnificent angel, appearing before a young woman going about her day. He extends to her a flower of purity, a lily, and reassures her: Do not be afraid.

Looking at one of the paintings, for one moment I am able get my arms around the fullness of my own parenting experience. The terror and the peace. The peace and the terror. It’s there, in oil on board, just right there in four square feet, inviting me to react, to feel it, to stay with it. So I do.

And then it’s gone. I move on, strolling once again. Through the Dutch masters, through the Impressionists, through the gift shop, back out on to the street, back to the conference, back to life. Both the escaping and the embracing of the fear have worked their magic, and even though the music of disability gets cranked back up again, this time it feels like it’s got a beat I might even be able to dance to. At least, I’m not afraid to try. Thank you Gabriel (both of you) for the message.

I get by with a little help from my friends

Several years ago at the playground of our integrated preschool, a bunch of my mom friends were discussing the pros and cons of the kindergartens they had the option of sending their kids to the following year. Since my son had only one choice the following year, the self-contained classroom that I could either take or leave, I observed silently and jealously from the sidelines. When a good friend declared that all the trouble of touring and choosing an elementary school was “just the worst,” I vividly recall excusing myself to go help my son on the swings. Our friendship was never quite the same after that. I checked out. It just hurt too much to be so invisible.

As someone raising a child whose special needs impact his ability to sustain friendships with typical peers, I spend a lot of time thinking about his friendships and how to support them.

I spend less time thinking about supporting my own. I’ve come to rely on a trusted and loving circle of friends and extended family. I’m so grateful for them. John wrote it and Ringo sang it best: Oh, I get by with a little help from my friends.

When I reflect back on the past 10 years, I can see that not all friendships made it. That’s nothing particular to special needs parenting, or even parenting. Not all relationships last forever.

Some recent research shines a light on why several of my friendships couldn’t go the distance, and how I might have changed that. It also explains why some of my relationships have gotten stronger, and what might have made that possible, too.

Researchers at Brigham Young University recently released findings that for people raising young children with disabilities, certain types of social relationships are typically more harmful and others more helpful for parents.

Interviewing 40 parents of young children with disabilities, the researchers set out to answer the question of whether social relationships are always a help, or whether they might be a hindrance. Here’s what they found:

  • Relationships with spouses/partners and their other children were on the whole positive.
  • Relationships with friends, extended family and colleagues was more often characterized as negative.

There’s much to explore and discuss. But it was the factors that the researchers attributed this difference to that really caught my attention:

Since parents of CWD [children with disabilities] often receive training on accepting and working with the CWD, and siblings can receive similar trainings and support through schools or sibling networks, unrelated social networks may need sensitivity training to help families raising CWD feel accepted. Disability advocates have made broad based efforts to promote acceptance of differences (e.g., billboards, public service announcements, advertisements in magazines); however, individual level trainings may be warranted.

In the weeks that have passed since I first read this, I’ve mourned a little for the friendships that didn’t last mostly because our society doesn’t yet raise folks to be naturally accepting to disability.

I realized too that when it comes to all I know about inclusion and celebrating difference, I was not born this way. I had to learn. So did my husband and my daughter and my mother and my father. And if I wasn’t born knowing this, how can I expect that others would?

The researchers closed with this cautious recommendation:

Parents and family members of CWD may benefit from educational interventions regarding how to teach others in their social networks about disability issues.

OK, then. We need to be taught how to teach others about disability. Looking back on my friendships that have thrived over the past 10 years of raising my child, I can see what made a difference. Connecting with other special needs families is a natural step, as they too are being taught to accept my son when they learn to accept their own children’s differences. Writing this blog has given me the chance to share my experience with friends and extended family whose own knowledge and experience delights me. Modeling my own appreciation for my son’s differences with his peers (and my own) has also made a difference. Making the effort to include him in our community has also given folks a chance to learn something new.

What has worked for you? Which friendships have thrived and which have withered? What are some things you’ve done to strengthen friendships during early childhood? What techniques should we start to talk about as a community?

And while I’m at it, let me say to all my friends: Thank you. I’m so grateful that you’re in my life.

The Birthday Girl Gives Everyone Else a Gift

birthday cake
birthday cake (Photo credit: freakgirl)

This Saturday my son and daughter went to a birthday party of a very close friend, let’s call her the Birthday Girl, who recently moved to another town. Though the Birthday Girl’s older sister has been acutely aware of my son’s developmental differences for the past few years – I wrote about out a wonderful moment we both had last summer – the Birthday Girl had never seemed particularly conscious of his differences.

Based on my observations of the Birthday Girl and my son together, I assumed that my son would just blend right in with this group of fifteen birthday-horn-tooting, sugar-high seven-year-olds. Boy, was I wrong.

It hadn’t occurred to me that because this party was in another town, many of the kids attending wouldn’t have met my son before. In fact, I wonder if many of them had ever met any child with a cognitive disability as great as his before. It made for an interesting party.

A few minutes after we arrived, the kids were invited to sit at the large dining room table for pizza. At the head of the table, the Birthday Girl had set a place for herself and my son, and insisted that he sit next to her. On either long side of the table, many pairs of eyes stared at him, curious about this boy who moved differently, talked differently, and looked very different, too. They weren’t rude, just quiet and clearly very curious. I tried to facilitate somewhat but was really at a loss as to how to turn this in to a teachable moment.

After pizza the kids went out to the back yard to play for a while, then came back in to have cake. Again the Birthday Girl took my son’s hand and led him to the head of the table.

A few moments before, the kids had been asked not to blow their mind-numbing birthday horns indoors a few minutes before; somehow my son missed that message and proceeded to toot away.

“It’s OK that he’s tooting,” Birthday Girl said. “Because he’s…” and she stopped short, not knowing how to end the sentence.

“Cuckoo,” another child said.

“DON’T COMMENT,” she yelled insistently. “Well, you can comment, if you want to say something like, ‘He’s so nice.’”

And that was that. The party proceeded on. The kids watched a movie, and my son had the darnedest time trying to stay focused. He made noise, climbed on the kids, and eventually, I brought him outside with some toys to play while we grown-ups had a beer.  I felt satisfied that on some level progress had been made. I wondered what it would be like for these kids the next time they met a child like him. Maybe they would consider that child a little less strange, a little less cuckoo.

Recently Kara Baskin wrote a nice piece in the Boston Globe about the simple wish list she has for qualities she hopes to see in her child: graciousness, gratefulness, kindness to strangers and kids who are bullied and old people. Who could disagree?

It struck me that that was probably what all these birthday party guests’ parents wanted for them, too. But it is Birthday Girl who is all those things, and part of why she is is because she has been given a many, many chances to practice being patient, considerate, compassionate, and accepting; many, many chances to see my son laugh, struggle, and love her, too.

If we want our children to be good baseball players, we have to give them a ball and a bat. If we want them to play piano, we have to get access to a piano. If we want our children to be compassionate, we have to give them situations to practice compassion. Not just write lists about it, but do it.

Here is a girl, freshly seven, standing up for someone vulnerable, speaking out to her peers and telling them not to bully. Modeling for her friends how to not just tolerate and accept, but to welcome and appreciate difference. How amazing her life will be. I am excited to watch her grow and am grateful to learn from her.

Happy Birthday, Birthday Girl. You are already wise beyond your years.

No Pity, part 1

I bring along my son, who attends a special education school many miles away, when I pick up my daughter at her neighborhood school’s after-school program.

Since he started attending the far-far-away school a year ago, the ties that bind him to our neighborhood are snapping, one by one. Granted, they were never strong, as he’s always been in a self-contained special ed classroom. But hanging out in the after-school room while his sister wraps up an activity and gets her stuff together is often the only five minutes he gets on any given weekday to hang out with a typically developing child besides his younger sister or her friends, who are not his friends.

Yesterday, he and I were approached by a young boy, probably just his age, who looked at my son, turned to me, and asked, “Can he talk?” Assuring him that he could, I facilitated a little introduction. Stimulated by the bustle of the activity in the room, my son had a hard time making eye contact and speaking in a voice loud and clear enough to be understood by the boy. “Why does he talk like that?” the boy asked. Slowly and gently I replied “Well, because his brain works a little differently than yours or mine.” Piggybacking on my egregious error of talking about my son as if he wasn’t there, the boy replied, “I feel sorry for him.”

“You shouldn’t,” I told him. I corrected myself. “You don’t have to. He’s happy.”

A teacher overheard us, told the boy to go back to what he was doing. My daughter appeared, ready to go home. There was just too much commotion in the room and too much chaos in my head to know the right thing to say, so I let it drop.

Pity is just an indicator of not being aware of someone’s strengths, which in turn is an indicator that there isn’t much opportunity to get to know someone in the first place. Inclusion, inclusion…how long do I have to wait?

My six word memoir(s)

My airwaves have been silent lately. Some new professional opportunities have offered me the chance to share my perspective as a special needs parent to such a remarkable degree that I seem to have little time and few words left for blogging.

But an opportunity came up last week to create and share my six-word memoir. Have you seen these? Six words to capture the essence of my truth. Even I have time to find six words. Granted, my truth has changed a lot in the last 10 years. Becoming a parent of a child with complex medical, cognitive and behavioral needs has gotten me access to deeper truths I wasn’t aware of before. Or maybe the truth hasn’t changed, but the vantage point has shifted.

I’ll give you a for instance. On the eve of my son’s birth, after years of struggling to get pregnant, I was convinced that all of our challenges were behind us. My memoir then:

And they lived happily ever after.

Fast forward a few years, after the two cardiac interventions, the MRIs, the g-tube surgery, the hundreds of Early Intervention sessions, the memoir would have looked something like this:

Not quite what I was planning.

Or, if I’m being totally honest, I can say that I didn’t really need all six words. Two would have sufficed:

Why me?

But something has shifted again. Diving into the deep end of the disability world, finding companionship and empowerment, spending time in silence to reflect on what my son, my family and I really need and want, going from having a broken heart to one that was broken open wide to let life in—it deserves a new headline. So here it is:

How did I get so lucky?

It’ll change, I’m sure. What’s yours?

Overtaken or working through?

Last week I wrote about how my professional and personal worlds are colliding now that I’ve started working for a project that advocates for kids (of all kinds, but especially with special needs) and their families in healthcare reform.

Sitting down to my journal this morning, I flipped back through the past few weeks and noticed that Disability — as both theoretical concept and a pragmatic reality — hasn’t just seeped into every corner of my life: it’s pushing out nearly everything else. It’s filling not just the huge blocks of time I think of as “work time” and “family time,” but even the small slivers of time in between, not just the thoughts but the space between the thoughts, permeating my consciousness from the moment I start journaling at 5am to the last few moments of each day I spend reading every night. (The book right now is required reading on the evolution of disability rights, I kid you not.) The many, many moments in between  —  checking email, talking to friends (often also parents of kids with special needs), planning for the future, running errands and making calls (picking up meds and scheduling specialist appointments) leave little time for other things.

The irony is not lost on me. In the process of trying to build a life unimpeded by the limits of disability, it looks as though it is taking over like a kudzu vine. In an effort to move beyond disability by becoming empowered by it, I have become ensnared.

It’s cause for concern. This level of immersion in the stories of others and their challenges leads to a sort of vicarious trauma that will surely lead to burnout. And surely no one feels like hanging around a walking protest sign. At moments I bore myself.

And yet… (yes, there’s always an “and yet….”) it strikes me that the seeming claustrophobia that Disability is playing in my life right now is in fact a cocoon; there’s no way for me to metamorphosize to the butterfly-hood that is a joyful, inclusive, authentic life without being held completely captive by this for a little while. In my struggle to break free, my wings grow stronger and eventually, when the threads of the chrysalis release me, I will be something completely different than I was before.

At least, that’s what I hope.