Disability and other health challenges have many causes – from accident, to disease, to genetic chance. The result is often a daily test of individual resolve and strength. But along with these solitary struggles, there is one common to all: stigma.

What If We All Did This?

By Cheryl Gartley

Part of the reason for the pain and the perpetuation of stigma surrounding health conditions is that others often do not know how to interact when they meet someone with a visible health condition; hear about a diagnosis that might not be visible; or observe behavior they do not know how to interpret.   I’m not a facile user of social media, it’s all I can do to create documents and email.  However, I have learned how to follow the neighborhood network and recently I found the post below (used with permission).  It garnered one of the largest number of responses (positive all) of anything I’ve seen to date on our network (29 replies and 98 thanks) and two weeks later, at this writing, people are still remarking on this post.

“You may have seen us around. . . the older guy pushing a four-wheel rollator down Central Street with a little black Schnoodle heeling beside him or romping on the parkway. Trooper, a miniature schnauzer/miniature poodle mix, is a trained service dog and I have a disability—I am stone deaf. Trooper alerts me to all sorts of sounds. He jumps up on me and leads me to wherever the sound is coming from—a knock at the door, the ring of my captioned phone, the beep of my Instant Pot, the wail of a fire alarm, the call of my name and many more.

He is essentially a fuzzy, four-legged item of medical equipment, much as an oxygen tank is for someone with COPD. That’s why federal law (the Americans with Disabilities Act) allows us to go everywhere the general public is permitted. Everywhere. (Except, of course, sterile environments like hospital operating rooms, restaurant kitchens and swimming pools.)

When service animals are on the job, they shouldn’t be distracted. That could be a matter of life and death, especially for people who are blind. If we spot you walking your dog down the sidewalk, please don’t be offended if we cross the street in mid-block to avoid you. Any dog, even a friendly one, can be unpredictable, and we just try to avoid potential disaster.

So far as humans are concerned, hearing dogs like Trooper can be taken “off duty” quickly to say hello to friendly folks. Both Trooper and I like to sit down and chat with people who might be interested in service dogs or just in shooting the breeze. Trooper especially likes small children. And the ladies, probably because his trainers were all women. (He’s OK with guys, too, if he sniffs them and decides they pass muster.)

We chat about Trooper’s rescue as a stray from the shelter in Bakersfield, California. We talk about his six months of training at Dogs for Better Lives, a nonprofit in Central Point, Oregon, before his trainers brought him to me in Evanston. We talk about the obedience classes he had afterward with a private trainer. We discuss the ongoing schooling he must have to keep his skills sharp.

When I talk to business people, one of the questions I am most asked is: “How can I tell if a dog coming into my establishment is really a service dog?” Sadly, it’s hard to tell the fakes from the real. My advice: Don’t even try. That’s the safest thing to do.

Maybe their humans don’t look as if they have a disability. Many service dogs help people with invisible disabilities—diabetes, autism, PTSD or psychiatric disorders, for instance. It’s illegal to ask a service dog partner what his or her disability is, or ask for documents for the dog. By law the dog doesn’t even have to wear an identifying vest, for some people don’t want it known that they have disabilities. They want only to be treated the same as everyone else.

What a business person can legally do is ask, “Is that a service dog needed because of a disability?” and “What task has the dog been trained to do for you?” Then an eye can be kept on the dog’s behavior. If any dog, service animal or not, misbehaves—barks uncontrollably, tries to jump up on other patrons, steal food from tables, or pee on the floor—it can be banished immediately and the patron served without the presence of the dog.

Although service dogs must be well trained, they can make mistakes or have off days. Although their public behavior is supposed to be impeccable, they are not perfect. They’re almost human. (If suddenly startled, Trooper might bark once, but he’ll settle down quickly. Just like me.) There. Now you know all you need to know about service dogs.

When you see us, smile and say to me, “Can I say hi?” If I can, I’ll stop and bring Trooper over for a hello and a pat.”

IMAGINE:

Imagine what it would be like if every aspect of interacting with an individual who is stigmatized due to a health condition was written about so thoroughly and authentically by someone who lives the experience.  Imagine if the hundreds reading this blog sent their experiences to info@rude2respect.org. and their neighborhood network.  Imagine an educated world inhabited by individuals who understood what they were observing when out and about, and people comfortable knowing just how to interact.   Imagine the lyrics from the Beatles song coming true….

“You may say I’m a dreamer
But I’m not the only one
I hope someday you’ll join us
And the world will be as one.”

IMAGINE!

The One That Got Away

By Cheryl Gartley

Have you ever wanted desperately to find just one person from your past?  No, not an old boyfriend, but someone who did something fantastic in your life and got away?  Maybe, just maybe, the power of social media will spread this story far and wide and the person I’m hunting for will identify herself.

I don’t have a video, or even a photo – it was all so unexpected and happened so quickly.  When I tell you the story, it might seem like such a little thing she did for me.  Maybe it was the timing in my life (a very discouraging period), or the unexpectedness of the act.  But frankly as I try to analyze, I think it was the fact that a million other people could have been in the same circumstances and not acted as she did.   And you know the worst part, I couldn’t describe her to save my soul.  But then maybe that isn’t important, because she’ll live in my memory until the day I leave the planet.

I was walking (on Canadian crutches) from a parking lot (the kind that has just one row of parking opposite a one story sprawling office complex).  I headed toward my acupuncturist’s office hoping someone was sitting in the waiting room who would put down their phone long enough to open the heavy door for me. However, I don’t hold my breath regarding this kind of help.  Not because the waiting room is usually empty, but rather because all too often people simply watch me struggle in and go back to their phone or magazine.

This day, a car pulled up to the curb behind me just as I approached the office door and my first thought was “oh no” the driver is lost (as often is the case in these huge complexes) and is going to ask for directions.  This seemed to be confirmed as she jumped out of the car and ran around to me.  At least, I thought, she didn’t make me balance to bend down to speak to her through her car window – score one for thoughtfulness.  But rather than inquire how to find an office she hurried right past me and opened the office door.  I recovered enough to say a profuse thank you to which she replied that someday she might need someone to do the same for her. Then, clearly in a hurry, she dashed back to her car and drove off before I could get another word out.

I surely would have liked to know what motivated her to be one in a million in attitude and action.  I know that there is probably not a snowball’s chance I’m really going to find her through this blog – but with luck this recounting will find something else, something more – it will find a bunch of readers who, now that the idea has been planted, will look for opportunities to be just like this woman. They’ll turn into people who will stop, run around their car and help someone.  So please pass this on and let’s see how many people instead of seeing stigma, or fearing an uncomfortable interaction, will instead see how easy it is to make a difference and take action to commit a random act of kindness.

To quote Jackie Robinson, “A life is not significant except for its impact on other lives.”

What Were They Thinking?

By Cheryl Gartley

I’m in the wrong generation to have an affinity for expressions like “Really?” (said in exactly the right tone) or “What was he thinking?”,  but somehow I find that recent news has actually elicited these comments from me (at least in my mind, if not verbally).  And no, I’m not talking about the ever increasing number of  political surprises that pepper the nightly news.  But rather several transportation incidents that made the news in a very short time frame during this past summer.

The first one I became aware of happened on the Great Western Rail Train in England to a woman named Tanyalee Davis, a Canadian making her livelihood in the UK as an award winning standup comedian.  Ms. Davis has a form of dwarfism and uses a scooter for mobility.  She was traveling from Plymouth to Norwich with her partner Kevin when a young mother boarded the train and requested putting her pram in the handicapped spot reserved for wheelchairs where Ms. Davis sat on her scooter.  Not only did the conductor ask Tanyalee to move (it seems scooters are not classified the same as wheelchairs), but threatened to call the police because Kevin was videoing the exchange.  Then the conductor made an announcement on the address system to the entire train saying that it was “the woman with the mobility scooter that was  causing the problem and that the train would be delayed indefinitely.”

Davis stated: “It was humiliating and I cried for most of the journey home. I am sick of having to deal with this all the time. Just because I use a mobility scooter it doesn’t make me a pariah, it doesn’t make me less disabled. I’m just trying to make a living, to make people laugh.”  (It may cheer you up to know that Tanyalee has regained her sense of humor and now  uses this incident in her comedy routine calling it the scootergate saga.)

It’s not just the British railroads that have no respect.    Australian Paralympic gold medalist Dylan Alcott, who was Australia’s 2016 Paralympian of the Year, was left stranded on a plane after airline staff were unable to locate his wheelchair.  He tweeted in a post highlighting the glaring inequalities that still exist for people living with a disability. “Left on ANOTHER PLANE without my wheelchair being brought to the gate,” Alcott began.  “No idea where it is. Waiting for TOO LONG.”  One of Australia’s most talented and decorated athletes and yet he cannot deplane and no one steps up to help solve the problem.

Then there was the family trying to fly home from Europe to England (from what might be the last vacation they can take together as a family).  At the airline’s gate the staff challenged the mother saying that her son didn’t seem disabled. They suggested that he should just get off the scooter and board on his own because they had no record of her claim that she had let the carrier know there would be a scooter on board.  As this distraught mother wrote in her blog, was she supposed to explain for all who were impatiently waiting behind her to hear, and with her son right beside her, that yes he was disabled with an incurable progressive neuromuscular disease that would take his life at a young age?

At this point, I’m more likely to say  “Holy Cow, are they kidding me?”  than the common reactions of today to all these episodes.  But whatever expressions you use, reading all these articles in one summer certainly made it easy to understand why so many with mobility challenges elect not to travel. It is hard to imagine that these stories aren’t  just the tip of the iceberg.

It’s time we change the story about mobility devices and stand up for those using them.  Where were the passengers on that Great Western Rail Train who should have stood up  to the conductor?  An entire train heard the announcement and no one did.  Or the people deplaning in Australia in such a hurry they couldn’t see what was going on as one person was left behind.  In fact maybe it’s time to deplane people needing assistance first —wouldn’t that cause a commotion if the wheelchair wasn’t there waiting?  My guess, the problem would be quickly solved.

As Ardra Shephard wrote in an article for The Mighty  – “Turns out there’s a whole world of stigma associated with walkers, wheelchairs and canes that I’d never considered back in the days before I’d needed them. It’s a stigma that’s warped most of us into unconsciously associating mobility aids with some pretty demeaning words. ..like weakness, less-than, burden, victim.  Disability representation is coming, but we can’t wait for media to catch up. Disability has an image problem, but social media gives us the platform. We can be the biggest PR firm in the world, rebranding mobility aids so that when we see those who use them, we don’t see stigma, but strength, resilience, independence, perseverance, ownership, pride, ability.”

Please do all you can to help with the “rebranding,” and while that is happening, just plain be helpful.

Bested By A Six-Year Old

By Cheryl Gartley

The American Film Institute’s 100 Years…100 Movie Quotes aired on a CBS special in 2005. Selected by a jury of over 1,500 leaders from the creative community (film artists, critics and historians) the program highlighted a list of the100 top movie quotes of all time – the quotes from American films that circulate through popular culture and become part of the national lexicon.

I imagine there isn’t anyone in the English speaking world who doesn’t quote these from time to time – “I’m gonna make him an offer he can’t refuse.” (The Godfather); “Toto, I’ve a feeling we aren’t in Kansas anymore.” (The Wizard of Oz); “Go ahead, make my day.” (Sudden Impact); “May the Force be with you.” (Star Wars) and “E.T. phone home.” (E.T. the Extra-Terrestrial).

But my all-time favorite (number 19) may not be as recognizable.  It is from Network, a movie about a fictional television anchorman (Howard Beale) who threatens to commit suicide on air, and after a long on air rant instructs his audience “to get up right now.  Sit up. Go to your windows. Open them and stick your head out and yell – I’m mad as hell and I’m not gonna take this anymore!”

Beale further advised his audience: “Things have got to change. But first you’ve gotta get mad! You’ve got to say, ‘I’m mad as hell, and I’m not going to take this anymore!’ Then we’ll figure out what to do about the depression and the inflation, and the oil crisis.  But first, get up out of your chairs, open the window, stick your head out, and yell, and say it: ‘I’m as mad as hell, and I’m not going to take this anymore!’”

The more I work on Rude2Respect the more I’m beginning to understand his argument. Maybe first we do have to get mad, otherwise millions will continue to stay in their homes rather than face the staring and/ or questioning public.  Millions more will keep their health conditions hidden for fear of how they might be treated if people were aware that they had cancer, or were HIV positive, or had a hearing loss, or one of the huge number of other health conditions not visible on a first encounter.

I believe the main reason getting mad is an effective idea is that it reduces the risk of self-stigmatization.  If you are mad, it is hard to simultaneously buy into whatever stigma is being thrown at you and internalize it as your own self-concept. Getting mad might act as a kind of armor or maybe it can refocus self-consciousness so that our response to rudeness is not to feel like a victim, but to know that we have the right and the strength to confront a perpetrator – with a frank, but not rude, response.

Last week I started my own version of mad (and no, not by flipping on my witch switch that I’ve told you about previously). Instead, in the calmest tone I can muster, I decided to start calling people out when they were being rude.  However, in retrospect, it probably wasn’t the smartest move to start with a six year old!

I met her at a playground when she came rushing over to firmly plant herself in front of me and stand and stare.  Me: “Are you just going to stand there and rudely stare?”  Her: “What are those?” – pointing at my Canadian crutches.  Me: “I asked you a question.”  Her: “And I asked you one.”  Realizing I was soon to be reduced to a 6-year old’s tit for tat fight on a playground, I capitulated.

I explained to her they were simply a different kind of crutches and surely she’d seen crutches before (call this a little un-adult-like dig if you must).  She acknowledged she had, but wanted to know how these worked because there had to be a reason I preferred these.  So I had a little genius on my hands!  An enlightening dialogue followed, one where I might have learned more than she did!  The main thing I learned is that clearly curiosity must not be mistaken for rudeness and stigmatization.  Before she ran off to play she firmly ended the conversation with, “See I wasn’t staring, I was learning.”  Score one for the other guy.

The next episode of getting mad occurred the next day at an Ethan Allen furniture store.  Their receptionists are trained to page sales staff using a code to let them know when someone comes in. When a salesperson returned the receptionists call, I overheard her say a woman on crutches just came in.  As she set down the phone I said, in an amazingly pleasant tone that was certainly a rude way to describe me.  (I mean there were other options – a woman in a pink coat, a woman with a backpack, etc.) She looked startled, shocked, confused.  Score one for being an ogre.  The main thing I learned is I am indeed mad as hell.

So now the challenge is, if we are going to take Mr. Beale’s advice, get mad, and then figure out what we are going to do about it – then what are we going to do about being stigmatized at every turn?   I think the answer is probably different for every single one of us. However a thought does comes to mind.  Recognize your right to get mad, but also work on knowing that “not giving a damn” about the opinions of casual others is important – and what’s even more important is remembering all of what makes you who you are.

In the number one quote on the American Film Institute’s list, Rhett Butler says to Scarlet O’Hare (Gone with the Wind) when he has finally had enough of her rejections –  “Frankly, my dear, I don’t give a damn.”

Well there is no doubt we are all fed up with the public’s behavior so perhaps that’s the place we all need to start – a place where we know our own self-worth and how little staring and rude questions really  matter in the grand scheme of things.  A place where we can say to ourselves “Frankly I don’t give a dam” – and then as the Brits say: “Keep Calm, and Carry On.”   Sure beats being trounced on a playground by a brilliant little six-year old!

Inclusion Rider

By Cheryl Gartley

At the 2018 Academy Awards, actress Frances McDorman, ended her acceptance speech for best actress with two words “inclusion rider.”  Although clearly meaningful to the attendees, my guess is that the millions watching from home were clueless about what was arguably the most important two words spoken that evening.

An “inclusion rider” is a clause added to an actor’s contract that requires the cast and crew be diverse in order to retain the actor.  The concept was created by Professor Stacy Smith who is the director of the Annenberg Inclusion Institute. In a Ted talk she stated: “Across the top 100 films of (2015), 48 films didn’t feature an African-American speaking character, not one.  Seventy films were devoid of Asian or Asian American speaking characters who were girls or women. None. Eighty-four films didn’t feature one female character that had a disability.”  She goes on to say: “This is not underrepresentation, this is erasure, and I call this the epidemic of invisibility.”  An inclusion rider was her solution.

Although inclusion riders were designed to be used to help level the playing field in the film industry, I cannot help but think about the advances we could make in society if inclusion riders showed up in other contracts too, for instance in the executive suites of American industry.  Imagine how the coverage of the recent Paralympics games might have changed.  Start to finish there was network coverage of the 2018 Olympics in PyeongChang.  However, not so much at the Paralympics following only a few days later at the same venue.  What happened, did the camera crews’ visas expire, were all the anchors suddenly thrown out of South Korea?  Doubtful.  More likely, business decided that not enough people were interested in watching the Paralympics, so advertising dollars were not poured into these games.

Imagine a different world, one where top executives of industry demanded an inclusion rider in their contracts right alongside their carefully negotiated golden parachutes.  And those same executives said to the networks, we want thorough coverage of the Paralympics and the Special Olympics too, that is if you want our advertising dollars for the most currently viewed of these three events.

This would help to make a dent in the epidemic of invisibility Professor Smith speaks about.  However, while we are waiting for that unlikely top level ground swell, consider that perhaps one of the reasons the epidemic of invisibility persists is because we, you and I, let it happen every day.

How?  People with health conditions and disabilities are the largest minority in this country, and yet how visible are we on a daily basis?  How many individuals elect to stay home rather than deal with the stigma they expect to experience when they walk out the door?

Why? Is it because we so want others to see us as a person first, with the health condition a distant second? Clearly that would be great, but maybe it’s not that.  Maybe what keeps us supporting the invisibility is fatigue.  Just being plain tired of the focus being on how we are different, rather than how we are the same.

Whatever the reason, it is in our hands, not others, and until we rise up and band together to demand change, we will be part of the epidemic of invisibility. Like so many of today’s movements, it is way past time to really look at this issue, because it is hurting us all.

So is there a way to stamp an inclusion rider on each and every one of our lives …and try to become the change we seek?

Have a careful look at your day.  Who might you be erasing?

Nothing About Us Without Us

By Cheryl Gartley

I’d be amazed if anyone can find even one individual who has shouldered “the buck stops here” responsibility for organizing a conference, summit, or any other type of large meeting, who could not relate to the idea that the best gift someone could give to them would be permission to not show up to their own event!  Because by the time the conference day arrives, what’s left of you just wants to sit and stare into space, preferably from your own bed with a great book in hand.  At least that’s how, regardless of the import of the topic, I have felt about every conference prior to Rude2Respect’s Health Stigma Summit.

As always, during the Health Stigma Summit, there were a zillion little operational issues, and the usual number of behind the scenes (if you are really lucky, you can keep the drama there) challenges popping up.  The mechanics of the Summit were not different in this regard, but in so many other ways it was a unique, one-of-a-kind inspiration.

The first difference and an outcome very dear to my heart was that, although many cautioned against traveling this road (in fact, they emphatically stated it couldn’t be done), it was unfolding right before my eyes.  Experts said that individuals affected by stigma due to a particular health condition simply wouldn’t want to leave their silos and work together.  And yet, people came (admittedly some needed a bit of arm twisting) – delegates with hearing loss, mobility challenges, alopecia, scleroderma, gastrointestinal disorders, HIV, Hep C, loss of vision, facial disfigurement, ostomies, addiction, incontinence, COPD, chronic pain, dystonia, Sturge Weber, MS, spinal cord injury, Spina bifida, dwarfism, epilepsy, liver disease, and fistulas.  In all, 40 nonprofits were represented.

Two hours into the meeting it was clear that everyone got what Rude2Respect has believed all along – that not only are we better advocating together against health related stigma, but also importantly, the stigma experience, once the first layer of the onion is peeled away (i.e., the particular health challenge), is amazingly the same. As the light of this truth dawned on everyone present, the buzz of excitement never left the room.  In fact, the only two attendees who were caught nodding off were Beethoven and Rueben, the beautiful service dogs that brought their partners to the Summit.

Among the many aspects making this Summit unique was a panel of individuals who disclosed what their lives were like as they faced stigma on a daily basis, some with humor, others with breath taking candor, and one for the first time divulging his status as HIV positive. It’s seldom one sees such courage first-hand.

The Summit also provided those working on Rude2Respect with an exceptional opportunity to present the influential delegates with an overview of the activities currently underway and the vision for the future.   Most importantly, a half day was spent in a small group process seeking direct feedback from people who are most affected on two specific R2R efforts being planned. And the delegates responded with such constructive enthusiasm, proving once again the principle we deeply believe …

“Nothing about us without us.”

But perhaps best of all, is hope that this enthusiastic feedback indicates that years from now, advocates for diverse health related causes will be working together to speak up, to educate, and to shake off the impact of stigma, joining together in an effort to change the behavior of those who are rude and those who are just unwittingly disrespectful.

The following received shortly after the Summit illustrates the impact of coming together: “With Thanksgiving rapidly approaching I wanted to let you know how deeply the Health Stigma Summit touched my life and to thank you for inviting me to be a part of it.  The Summit opened my eyes to what stigma is and how it truly impacts my life. The incredible people I met and the conversations I had shifted my entire being into a stronger place.  When I returned to work, I no longer remain quiet when I have an opinion especially when it comes to the communities we serve. I know now that without a doubt my voice is important and my voice must be heard.  This comes as a change for my co workers.  I am usually stoic and manage to educate, but not assert my opinions.  No more!  ____ is an amazing organization, but it is hypocritical.  It is not OK that I am the only person with a disability on staff and I am working on changing that!  I have always stood up for others when they were being marginalized, but I am less likely to do it when it is me being STIGMATIZED.  No more!  Thank you and everyone who is leading this fight!  You have opened a door for me that I am charging through.”

What the world needs now, is more people charging through the door Rude2Respect wants to open.

I know where I will want to be in that future, especially when funding is available to organize another Summit – I certainly will no longer wish to remain home with a good book as my reward. Because there is a better reward – it is in giving hope to individuals like the person who wrote – “I also am tired of being hearing impaired and having people not understand how frustrating it can be. I have a hearing aid but am still DEAF in one ear. It is exhausting and causes me headaches trying to keep up with conversations.  I’m also tired of my migraines, my Raynaud’s disease, my neuropathy, etc.  Can’t we all just treat each other like human beings and not things to yell and gawk at. Let’s go from rude 2 respect.”

Yes, let’s.

Never ever judge a book by its cover

By Cheryl Gartley

Were you often told when growing up “not to judge a book by its cover”?  There were times that lecture worked on me, but mostly, not so much.  Then I turned the corner one glorious summer day in Amsterdam, while playing a few hours hooky from a medical meeting.

Going missing isn’t exactly professional, but otherwise I was going to have spent all those hours on a plane only to see a venue, a hotel room, and airports.  It turned out to be one of my better decisions, because that was the day when I truly learned why I shouldn’t judge a book by its cover.  It was also the day when I developed my affinity for colored  hair of all hues …not just bleached blond and streaked auburn, but orange, purple, green, and (now that I’m working on Rude2Respect) blue and pink.

It was early afternoon and I had been standing in a long line in front of the house where Anne Frank had hidden during the war.  As the line snaked back and forth I was enjoying eaves dropping on the German teenagers behind me as they attracted frowns and judgmental looks from others due to their punk appearance and over the top hair colors.  Not unkindly, they in turn were passing the time exchanging hilarious comments and made up stories about the disapproving strangers staring at them, apparently totally confident that no one else understood a word.

When I couldn’t keep a straight face any longer I turned and in my high school German not only agreed with a comment, but added one of my own.  Not surprisingly, stunned silence momentarily followed. Then, after they burst out laughing, I was peppered with questions about America that didn’t end until we reached the entrance to the home where courage had lived some 40 years previously.

Distracted, it was only at the entrance that I finally paid attention and the reality of my situation hit me.  I saw that the entry was behind a bookcase opened to allow access to the attic. Me, my briefcase, and the clunky healing sandal on my foot were not going to make it up those steep narrow stairs. Like hello, what had I been thinking? So I stepped aside to let the kids pass explaining that the stairs were too much for me. Before I could react one started up, reached back and yanked on my hand, while another snatched my purse and briefcase, and the third started to push me upwards from places his hands really shouldn’t have gone.  And there I was in Anne Frank’s home before I knew what hit me.

Once up, the teenagers put me back together and wandered off.   Wondering how on earth I was going to get back down again, I explored the small space slower than most, both out of interest in learning all I could, and dreading the descent ahead.

At closing time there was no choice but to head for the exit door.  There at the stairs sat the teenagers, waiting for me, still drawing disapproving stares from many adults.  The process was reversed on the descent, and yes with more well intentioned manhandling.   What caring kids, what judgmental adults.  I’d like to say I’m no longer among the adults who judge, but it would be a lie.  At least I’m no longer judgmental regarding hair color and working consciously to examine my other biases, prejudices and preconceptions.   In fact, my love affair with non-conformist hair color that began that day continues, and each time I see it on a young person, the memory of the kindness of those German teens reminds me more than my parents words ever could to not judge a book by its cover.

Central Street America

By Cheryl Gartley

It’s funny what can bring you hope, sometimes it can be the simplest thing and yesterday it was, with the bonus of it happening on a picture perfect fall day.

Yes, fall is finally here in the Midwest, the squirrels are crazy busy, school is back in session, and it is raining leaves! It’s once again that time of year when if you don’t have children to pick up after school you stay off the roads when the yellow buses swarm…stopping frequently (and holding up traffic) while their charges finally spill from the bus!

But sometimes household or work related schedules must be met and even sans kids, you find yourself caught up in the after school mayhem. While it wasn’t quite the Miracle on the Hudson, what happened yesterday on Central Street came pretty darn close.

Call it Main Street America to help you relate. In my town Central Street is the main artery. It is lined with a combination of condos and parks, interspersed with quaint stretches of shops and never without a couple professional dog walkers airing fortunate dogs among the bustle.

The street is crowded and so when a school bus stops so does traffic (both ways) as there is no place for the buses to pull over. Yesterday I was parked two cars behind a stopped bus when I saw something that made me think, this is not going to go well.

The bus driver literally ran (already I imagine he was expecting to hear blaring horns and angry shouting drivers) around the bus to open a side door and engage a wheelchair lift. At this point my rearview mirror showed at least 8 cars lined up behind me and we were just getting started.

A little girl rolled her wheelchair onto the ramp, got buckled in (a procedure to be reversed at the ground), and the lift slowly proceeded to lower her. I’m guessing here, but I figure at this point in the process we were about 3 to 4 minutes into the download, and in both directions a long line of waiting cars sat as far as the eye could see. My guess is all driven by people who just had to be somewhere else right then, running late, in a hurry, like all of us seem to be nowadays.

All I could imagine was how this little girl was going to feel about her place in the world when people got impatient and started shouting or honking their horns for the bus to move.

And here is the glorious part…not one horn blared. Not one! No shouts out windows either, just quiet patience as the leaves blew past.

When finished the bus driver practically danced waving an enthusiastic thanks in both directions to the drivers who had waited so patiently. Although clueless regarding the number of cars behind me now, amazingly as we started to move forward I counted over fifty cars that were “stalled” coming the opposite direction!

Do we thank the distraction of smart phones for this patience? Or, and what I much prefer to think, is that I had just experienced first-hand an example of how people, regardless of what we hear on the daily news, are still kind and thoughtful of others.

Like I said in the beginning, it is often the simplest of things that bring hope back to life.

When it happens a hundred plus times a year, you tend to assume…

By Cheryl Gartley

One of my colleagues, a life coach, says if you are going to assume an outcome, then choose the assumption that makes you the happiest. It’s some of the best advice I’ve ever had…I fail miserably at it!

The problem is, when it happens a hundred plus times a year, my personal version of “stranger danger,” I tend to assume it is about to happen again whenever I am using crutches, sporting a visible difference in the form of a leg brace, and a stranger approaches.

A recent case in point: I was leaving “Addicted to Love’s,” an upscale yogurt store whose slogan includes the word “addicted” – which in my case happens to be true. When exiting the store I noticed a woman eating her yogurt in her car parked next to mine. And – predictably I thought – she was exhibiting the usual “fascinated” behavior as she stared at me making my way to my own car. When her door popped open, my mind clicked into its default “stranger danger” alert: here it comes, either a Helpful Hannah who will gush: “Can I help you?” or make some inappropriate comment.

Instead she dropped her empty yogurt cup into the nearby trash bin and then said to me as she headed back to her car, “You have the greatest hair cut I’ve seen in ages.” Well, what a surprise. And guess what? I’m so jaded that as I thanked her for the compliment, I wondered for a moment if she was a therapist who had interpreted my body language correctly, and tossed me this unexpected bouquet.

Shortly thereafter, another assumption bit the dust. It took two in a row to mean the universe is trying to tell me something. An elderly woman came up to my car door just as I’ve parked in a spot that, all right, is questionable on several counts. But it is the nearest to my doctor’s office door and my car very clearly is not in anyone else’s way.

Deciding to be reasonable when she knocks on my window to tell me it is not a legitimate parking place, I smiled and said “I know.” Long wicked pause on my part, before continuing: “I’m in a lot of pain today and on crutches.” Waiting for the more that is not forthcoming, she slowly departs, and I settle in, taking my time finishing my doctor questions list before leaving the car so as not to end up seated next to her in the waiting room.

And would you believe, suddenly here she is knocking on my window AGAIN? Fortunately, before my “stranger danger switch” had me saying something I’d regret, she started speaking. “I don’t know what I was thinking, but I suddenly realized silly me, that woman could use help with the doors getting in. She is probably sitting in the cold car hoping someone will come along to help her.”

(The irony was rolling in like a fog, because now there are two of us with assumptions completely off target!) “And furthermore,” she continues, “I didn’t want you to think I am just a little old lady busy body. (Okay, that part she got right.) The fact is, last month I got a ticket and huge fine for parking in this very spot. I just wanted to warn you.”

With that being said, the two of us slowly made our way into the office, and yes, we did sit side by side, and we had a wonderful chat as we waited.

So my advice to you – sort through your assumptions and pick the one that makes you happiest. And to your great surprise, that may be exactly what will happen.

An effective response to the impact of health stigma is within our reach  

By Cheryl Gartley

We’re experiencing a renaissance of civil rights in this country. A woman ran for president of the United States on a major party ticket. People can marry whomever they choose. The country is caught up in a retelling of the story of our founding fathers – in a hip-hop musical written by a Latino and featuring a colorblind cast.

Major shifts indeed. And we plan to ignite yet another – for people of every age, gender, and life situation. For people who have difficulty walking, seeing, hearing, or comprehending the world around them, and millions more who cope with health conditions, seen and unseen, that redefine their life options. Disability and other health challenges have many causes – from accident, to disease, to genetic chance. The result is often a daily test of individual resolve and strength. But along with these solitary struggles, there is one common to all: stigma.

Health stigma – the judgment of lower worth unconsciously attached to people with physical or behavioral differences – is communicated in many ways. People may stare or awkwardly look away. Or they may avoid an encounter that makes them uncomfortable because they don’t know how to respond or what to say. These may be simple, innocent reactions born of confusion, not lack of compassion. But their impact is deep and lasting.

To those whose health condition already creates a sense of isolation and diminished self-esteem, these stigmatizing experiences are painful affirmations that lead to further separation. Too often, health stigma prompts a choice to live apart from society, in anger or depression, rather than embrace the strategies of coping. Those who are stigmatized begin to stigmatize themselves. This emotional toll has a physical impact as well, often hindering the success of therapy or treatment.

Medical solutions to many disabilities and health conditions may still be distant. But an effective response to the immense emotional and psychological impact of health stigma is within our reach.

Rude2Respect is about creating that change. It’s about bringing the issue of health stigma to light, and helping people with health challenges live with confidence and resilience. It’s also about educating the public on better ways to interact with people with both seen and unseen health conditions.

The launch of the Rude2Respect website and Facebook page is just the beginning, the base of a social media campaign to turn “rude” to “respect.” We’ll be reaching out to the public in search of role models to honor and celebrate. And we’ll be offering resources to people who live with stigmatized health conditions as well as those who want to better understand and support them.

Removing the stigma associated with disability and health challenges is an achievable goal. Join us in making this a success, in turning rude to respect – and eliminating health stigma in our lifetime.