“When someone else speaks for you, you lose”: patient empowerment as a civil rights movement

Our Bodies Ourselves original coverHere’s something I’ve never done: I’m capturing a comment from this blog five years ago and making it a post of its own, so it’s easier to find, because I think this is going to be more and more of an issue.

It’s clearer and clearer that, as SPM board member-at-large Peggy Zuckerman says, patient empowerment is becoming a true civil rights movement. As in, I bet within a year or two we’ll see protests in the street, especially as governments begin to fight back, e.g. the Belgian government’s “Don’t Google it” Google Ad campaign(!). In recent speeches I’ve been calling that “the empire strikes back.” When that happens, it’s a sure sign that the dominant paradigm is failing, and is not happy about it. And they start trying to hold back the tide of democratization. (Update: see Peggy’s comment below about how this impacts both care and the conduct of healthcare.)

The comment below was in the context of our post “Equity & Excellence: Liberating the NHS” (UK white paper). It was a reply to another comment from SPM co-founder Gilles Frydman. An amazing set of historical references all in one place.

Googling leads to this book: Nothing About Us Without Us: Disability Oppression and Empowerment, whose first sentence is indeed: “I first heard the expression ‘Nothing About Us Without Us’ in South Africa in 1993.”

It continues: “Michael Masutha and William Rowland, two leaders of Disabled People South Africa, separately invoked the slogan, which they’d heard used by someone from Eastern Europe at an international disability rights conference.” So I suppose it goes even farther back.

Interestingly, the next paragraph quotes Ed Roberts (“a leading figure of the international disability rights movement”), saying “If we have learned one thing from the civil rights movement in the US, it’s that when someone else speaks for you, you lose.” (Emphasis added.)

It continues: “In this sense, ‘Our Bodies, Ourselves’ and ‘Power to the People’ can be recognized as precedents for “Nothing About Us Without Us.”

Indeed, we here have cited Our Bodies, Ourselves as a pioneer of participatory medicine. And my first blog post about e-patients after reading the white paper, 1/28/2008, said “this looks to me like the Sixties motto ‘power to the people,’ made real in the world.” (Our Cheryl Greene replied on this blog.)

Regarding “when someone else speaks for you, you lose,” I recall the Ken Burns movie about the suffrage movement, Not For Ourselves Alone: the story of Elizabeth Cady Stanton and Susan B. Anthony. They too found that when they agreed to be represented by male allies in Congress, they were ultimately sold down the river … an expression that itself arose in slavery.

Sooo, what goes around is coming around: nothing about us without us, time after time. Thanks for tying it together, Gilles.

Think this isn’t a civil rights issue? Consider that in the United States, the HIPAA law (health data rights) is administered by OCR – the Office for Civil Rights.

And notice the parallels between our movement and those movements, above. Someday we too will look back on this day and wonder how it was even a question.



Posted in: positive patterns | reforming hc | trends & principles | Why PM




6 Responses to ““When someone else speaks for you, you lose”: patient empowerment as a civil rights movement”

  1. Glad to see your expansion on the issue. Until patients are recognized as having the right to the basic information on which their health care is built, they are subject to the whims of another party. That other party or system may have a duty to the patient, but without access to that data, the patient must approach, hat in hand, and hope for the fulfillment of that duty.

    Too often, doctors and others in the medical world are unaware of the trap in which patients are caught. They may announce treatments or medications to be taken, with no education for the patient made available. Perhaps wary for good cause, or without a commitment to the treatment, the patient loses trust in the doctor and his own judgment.

    While that can damage the individual patient and physician relationship, usually with the patient paying the greater price, this also undermines the health of the general public. Thus, the rise of quackery, suspicion of science in general, and a failure to support the needed research to improve our health.

  2. Vic Nicholls says:

    I have been writing about this for a while. Be happy to send my emails that go to Executive staff and legislators on the loss of civil rights, due process, etc. for people before the medical boards of the state.

  3. kathi apostolidis says:

    It’s a coincidence to read your post today, when our President told me this morning that he refused to attend an important conference because he was not offered time to present our position, since as he was told topic would be covered by other speakers!! His answer was exactly the title of your post.
    As you may remember “Nothing about Us Without Us” is the logo of ECPC and for reason!

    • Kathi, here is a thought to consider.

      If someone says “What you would say will already be said by others,” then whether they know it or not, they think they know what’s important better than you do. It is, simply, a combination of arrogance and disrespect; it is belittling.

Leave a Reply