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.

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.