My Twitter feed was abuzz yesterday with last week’s Boston Globe article by Billy Baker, Wheelchair icon revamped by guerrilla art project, and boy am I glad: aside from being a great story, it sums up everything I’ve been trying to explain about the shift to patient engagement.
I’ve spent time in a wheelchair, I used to teach in a school for handicapped kids, and my wife sometimes uses a chair, especially in airports. The usual view of the chair-bound person is as limited, confined, less able. In some ways that’s valid, but too often it’s overdone. Look at this photo, and compare the new icon with the one in the back:
- Old: Occupant is sitting, being wheeled around.
New: Occupant is in power, leaning forward, doing as much as s/he can. (Their site says “Here the person is the ‘driver’ or decision maker about her mobility.”)
- Old: Occupant seems to be part of the chair.
New (per the Globe): “the human [is] distinct from the chair, in an active position, with a feeling of forward movement.”
I’ll extend the metaphor:
- For the patient to have power, s/he needs access to the wheels. Nobody drives if you don’t give them the wheel.
- Exercising their power builds muscles, tone, experience and ability.
- Until that’s developed, the person may be weak. This doesn’t mean they have no potential. The answer’s to train, not to constrain.
- Simple accommodations can make a huge difference. Re wheelchairs: my own hospital still has unmanageable humps in some rest room doors. Re patient power: giving us our information makes participating easier.
And in both cases it helps when you make things accessible: as I said in Let Patients Help, “Clarity is Power.”
Note that none of this matters unless the patient knows s/he can contribute. Which leads to one of the biggest practical clinician tips of 2013:
Patients engage best
when providers invite it.
I remember my first times in a wheelchair – I assumed they’d tell me everything I’d need to know and everything I’m expected to do. That’s how it was in driver training, right? So it makes a huge difference when docs and nurses invite – and teach – engagement.
One more sequence in the article triggered these thoughts:
The original goal of the project was to begin a dialogue about the way society views disability. …
How about “… a dialogue about the way society views patients”? (How we all – patients and clinicans – view the role of the patient.)
… They felt the old symbol was stiff, robotic, with the chair functioning as a part of, not a tool for, the human.
This parallels what many patients say: they have a disease, but it doesn’t define them: they are distinct.
- In my first book I tell how in 2007 another patient taught me to think, “I have cancer – it doesn’t have me.” Today this is a marketing slogan for some cancer centers… well, I’m glad they “learned from” patients :)
- My buddy Kerri Morrone Sparling is one of the many PWDs (people with diabetes) who say “Diabetes doesn’t define me, but it helps explain me.”
- Indeed, some cite the disability movement as the source of the patient movement’s mantra, “Nothing about me without me.” (It seems to have deep roots – see this comment three years ago about the history.)
In both cases – wheelchairs and medical conditions – I see a busting-open of our assumptions about what limits they impose, with some of us shouting a new kind of “Yes We Can. Let us – help us – contribute all we can.”
I love this new icon and all that it stands for. Please read the article, check out their Accessible Icon Project site, and spread the word. Let’s invite all disease communities to endorse this as our view of who ought to be allowed to drive. Then, every time we see one of the new parking signs, it’ll be visible evidence that our world is changing.
And that’s a good thing.
Thanks to Twitter buddies @PracticalWisdom (Lisa Fields), who retweeted @Leslee_KGH (Leslee Thompson, CEO of Kingston General Hospital), who retweeted Canadian journalist @PicardOnHealth (André Picard) about this two days ago. Social media rocks!
e-Patient Dave says
On Twitter, @ComalliWrites adds this: “Don’t know if u or G have mobility probs, but grok this: http://travelscoot.com. 32#!! Squee! It’s changing my life.”
I love the idea but the website is rather confusing – it says only the Junior size is available, i.e. frame size for people up to 5’3″. Huh? (Maybe they’re so successful that the standard size is sold out, but you’d think the website would just say that, and say when the other will be available again…)
Here’s the scooter I used, by Tzora: http://www.tzora.com/product_13 Twice the weight of hers, but it served my particular needs at the time. I’d love to be able to compare them!
Hi Dave, I shared your post with Nikos at @DisabledGR, a Greek friend, who is on wheelchair following an accident, but who has done terrific things online for the disabled since the 80ties when no one here guessed about the internet!
Now we need a sign that says, “I will plow down your displays if you don’t make you store aisles wide enough!”
e-Patient Dave says
Hi Sylvia – I apologize, somehow my systems didn’t alert me that you’d posted this comment!
Do you know if there are ADA requirements that aisles be clear enough for a wheelchair? (For our non-US readers, ADA is the Americans with Disabilities Act, which mandates that public facilities must be accessible to people with various disabilities: elevator buttons and some signs must be labeled in Braille, buildings and curbs must have ramps, etc.)
And, to the point of “nothing about me without me” – does anyone know if the ADA was written by and with disability advocates? I’d think so, but I don’t know.
If it was, it’s a great precedent for how patient-related legislation and regulations should be written by and with – not “for” – patients.