Posts Tagged ‘conversation’

Privilege and Stigma in Health: Revisited

Last year, I wrote a series of posts about the idea of healthy privilege and health stigma. My definitions of these concepts were based on the work of others before me, such as Peggy McIntosh and Kendall Clark. You are welcome to go back to the original posts and read them, but I’ll share the definitions again for you.

health stigma

The feelings of shame, isolation, self-blame and invisibility that many people facing physical or mental illness feel when others make assumptions or judgments about their ability, willpower, character, motivation, or work ethic (to name a few)–Ann Becker-Schutte’s personal & professional experiences

healthy privilege

1. A right, advantage, or immunity granted to or enjoyed by healthy persons beyond the common advantage of all others; an exemption in many particular cases from certain burdens or liabilities. b. A special advantage or benefit of healthy persons; explained by reference to divine dispensations, natural advantages, gifts of fortune, genetic endowments, social relations, etc.
2. A privileged position; the possession of an advantage healthy persons enjoy over persons with illness.
3. The special right or immunity attaching to healthy persons as a social relation; prerogative.

In addition to the formal definition, I would add this:
Healthy people enjoy the privilege of bodies that work in the ways that they expect, free from regular pain or suffering, without extraordinary effort. Healthy privilege allows healthy people to assume that their experience is “normal,” and to be unaware that coping strategies that work for them will not work for someone dealing with illness.

If you’re familiar with the definitions, thanks for your patience in rereading them. I’ve been thinking about this issue again this week. These concepts have been on my mind again because I’m hearing things from my clients, and in the communities where I participate, the remind me that health stigma and healthy privilege still alive and kicking.

I wrote about another aspect of this issue a few weeks back, when I talked about shame and patient blaming in healthcare. And just last night, during a discussion on Twitter, a patient shared this experience:

@MedImprovePro: Cancer still stigmatized. BRCA+, but told by co-worker nurse ‘you wished that on yourself’.

I was floored. Absolutely stunned. How on earth is it possible that we still have people, let alone healthcare providers–who should damn well know better, who believe that cancer is something that we can “wish upon ourselves.” And why on earth would anyone make that choice?

I should know better than this. I hear my clients tell me about the shaming and blaming they face both in and out of doctors’ offices on a regular basis. I hear about the blatant discrimination against folks with all kinds of diagnoses, both physical and brain-based. I know this is out there.

But I believe that we can do better than this. So, if you’re reading this post, I hope you share it. And I hope that, as you share it, you look at one step you can take to educate others about health, health stigma, & healthy privilege. Because it is going to require all of us taking action to build and generate change.

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Empowered Patients, Engaged Physicians: Bridging the Patient-Physician Divide

Clifton Suspension Bridge from Hotwells

I am seeing a theme emerge in our discussions about healthcare. I hear it in my office; during the Medicine X 2013 conference; in a comment on my last post about my experiences at Medicine X; in the #patientchat TweetChat this week; in tweets that I have seen for the cHealth 2013 conference and the British Columbia Kidney Days. The theme is this–that empowered patients often feel as though they are engaged in a struggle with their medical providers to be taken seriously, to be treated as a member of the team, to be heard. And I have had my own patient experiences that have shown me that this isn’t just a patient feeling–it is an actual experience.

[tbpquotable]In all too many situations, it is an accurate perception that patients are rushed, dismissed, and discouraged from speaking up.[/tbpquotable] Patients have spent too much time watching conferences and summits in which the patient experience is represented by someone without a primary patient identity.

I agree with the frustrations that I have heard expressed. I have lived them. I believe passionately that patient voices should be at the core of professional and academic conferences. If we aren’t talking to our patients (or, in tech-terms, the end user), we are talking in an echo chamber. We need to be reminded of why we chose these helping professions. We need to hear where our hopes for good care are falling short of patients’ needs. We need to hear about the small things that work.

I have to admit, though, I am a little concerned about the divisiveness that I have heard arise. So many of my face-to-face clients have had difficult experiences as patients. They have complex chronic conditions that don’t submit easily to a diagnostic label. They have had to struggle to be heard. I want that struggle recognized. But the relationship-builder in me doesn’t want the struggle to be recognized by casting patients and physicians as opponents. I want to see relationships like the one between Michael Seres and Marion O’Connor (check out the great video below) recognized as normal, instead of extraordinary.

I want the many passionate, caring, engaged physicians to be connected with the many passionate, caring empowered patients in a proactive, cooperative way. I want to think and talk about how we can connect, and build bridges, and encourage one another when we hit obstacles. I think conferences like Medicine X, communities like the #BCSM Community, spaces like Talk About Health or WEGO Health, and chats like #patientchat are a wonderful start to that bridge.

I want to be part of the bridge. How about you? What else can we do? Where are the points of connection?

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