Dear Mr Winstanley,
Re: Your apology over the use of the term “disease burden” quoted below
Rethink wrote: In response to concerns over the use of the phrase ‘disease burden’, Mark Winstanley, CEO of Rethink Mental Illness said: “We sincerely apologise if any offence was caused by our use of the phrase ‘disease burden’ in our recent email to our supporters.
“Health organisations campaigning on a wide range of issues have been using this term for many years. It is widely accepted by health professionals and policy makers as the correct term for quantifying the national impact of a health problem as measured by financial cost, mortality or morbidity.
“It is in this spirit which we use the phrase to highlight this nationally important issue. It is in no way intended to imply that individuals affected by mental illness, or other diseases or disabilities are a burden.”
We are fully conversant with the use of the term “disease burden” being used in the context that you outline above. To the small number of people who have asked us why we were offended, we have made the following response:
“It is highly complex but I think there are three main arguments. The first point is that this mail out was sent to people who were not familiar with this term as a technical term, it was sent to everyday people, including a lot of disabled people. Rethink should be capable of thinking ahead and asking how this term would be understood by the random people they were sending the mailing to.
“Secondly, I think there is an acceptance that technical language can never direct, even at an unconscious level, how people, including the technicians who use it, perceive an issue. But this is questionable. In the same vein, technical language can reflect how something is viewed at an emotional or political level but be embedded within technical terms that cannot be challenged, just as you are questioning whether a technical term should be challenged. The concerns around technical language being “loaded” would require a whole book to be written to tease out all of the issues. It may seem radical to even question the use of language that is deemed to be technical or academic but there are good arguments for doing so, however these are too complex to go into here.
“There is a final point that relates to the medical model of mental distress which questions whether what is called “mental illness” is even “illness” (or “disease”) at all. For several decades there has been a question mark over whether mental distress is an illness or a human response to unbearable circumstances. This is why many survivors prefer the term “mental distress”. This non medical model of mental distress, a social model, has been argued for many years by survivors yet Rethink, along with the other mental health charities, still refuse to even consider it. Hence we have legions of people who are not helped by drugs yet who live with dreadful side effects from them. However, the pharmaceutical companies are too powerful for us ever to be able to move away from the medical model of mental distress. Having said all of this, I think for the purposes of this complaint, the first objection is more than enough.”
I would also like to add that many people have contacted us to say they were offended and I am attaching a few comments made in response to your apology:
“Rethink seem to think they’ve offered an apology – I don’t agree, plus this is not on their home page, but needs to be searched for”
“Winstanley has also clearly missed the point because he refers to “mental illness or other diseases” so reaffirming his belief that mental distress is a disease.”
“…I’m thinking there must be a long list of former technical terms that have been abandoned exactly because they were offensive, I’m not an expert in this but in my youth words like mad, handicapped, mongol, manic depressive, and more were in common use as the correct labels for people, so I don’t think calling it an accepted technical term can be considered a defence.”
So long as mental health charities continue to capitulate to the damaging ideas that people living with mental distress are fighting against, and refuse to participate in the debates that occupy us, your organisations will remain irrelevant to any meaningful progress that will eventually be made by those of us you are meant to be championing. It is precisely because you pose no threat to the status quo that you have, to some extent, the ear of government, however, as always, when we do start to impact on thinking around these important issues, you will jump on the bandwagon and claim all of the credit for our hard work for yourselves.
Denise McKenna, Co-founder, MHRN
Co signed by DPAC Steering Group
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