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.”