Guest Post: Caveat walker–Why ED charity has lost the plot
It’s very rare that I do guest posts here at ED Bites, but occasionally I do make an exception, and this is one of them. The post stemmed from a discussion at the ED Bites Facebook page, and after reading Holly’s eloquent thoughts and views on the subject, I asked her to explain them in detail here. Hers is a voice I wish there were a hell of a lot more of in the ED world. I hope you enjoy what she has to say! –Carrie
Tomorrow morning, more than a few people I know will be walking laps around the track at a local high school. The majority of them will have, or have recovered from, serious eating disorders, but they won’t – presumably – be walking to burn off the final remnants of last week’s Easter dinner. Rather, they will be participating in one of many recent fundraising events held across the country on behalf of NEDA, i.e. The National Eating Disorders Association. I, for one, will not be joining them. Permit me to explain.
I have been aware of tomorrow’s walk for several months. As an individual with an eating disorder, as well as something of an (admittedly armchair) eating disorder activist, I follow a number of ED-related blogs and Facebook pages. Yet my feelings about NEDA have been mixed – to say the least – for some time now. I’ve yet to fully forgive their regrettable, although fortunately brief, 2011 partnership with the STOP Obesity Alliance, and as a scientist by training, I take issue with their overemphasis on the purported role of mass media, waifish models, and the other usual suspects in the causation of what are, by all accounts, highly heritable, biologically-based illnesses. And so, while it is true that I do “like” NEDA in the contemporary, social media sense of the word, I am hesitant to say that I “like” them as an organization, if you catch my drift.
All of that being said, I have watched with interest as an increasing number of friends and acquaintances (most of whom I’ve met through treatment), as well as some of my former treatment providers, have popped up among the roster of registrants for tomorrow’s walk. Several of them have, impressively, raised more money than any other local participants or teams. Despite my misgivings about NEDA, I must admit that my initial response to witnessing their enthusiasm to fundraise for such an obviously personal cause was, “Great, good for them!” I considered walking myself, actually, although I ultimately realized that both my health and academic load would render doing so an impossibility. I even felt some remorse about this fact until yesterday afternoon – precisely – when a sudden burst of insight managed to penetrate the over-caffeinated, overworked, and arguably undernourished reaches of my harried graduate student brain.
Like many great insights, it began on The Internet, most likely in an attempt to avoid some other task that should have taken precedence over the rabid following of hyperlinks down a rabbit hole of righteous indignation. I found myself on Facebook – surprise! – staring at yet another post promoting a friend’s participation in tomorrow’s walk. I can’t say for sure what changed this time around – perhaps some fledgling neuronal connection finally sprung to life – but all at once, something clicked.
As mentioned, I have a science background, and I follow blogs like ED Bites fairly religiously. Consequently, I’ve become familiar with the current body of research – and the regrettable lack thereof – surrounding the causes and treatment of eating disorders. I know, for instance, that research funding is markedly disproportionate to the actual prevalence of EDs, and that there are presently no empirically-validated treatments for adult Anorexia Nervosa. With this in mind, I found myself compelled, yesterday, to take the short trip from my friend’s Facebook wall to NEDA’s homepage, and then to their 2011 Annual Report. Call me naïve, but I had long assumed – as I assume many do – that NEDA was a key contributor to eating disorder research activities. Alas, I was in for a surprise.
Reading through the report, I learned that in 2011, 77% of NEDA’s total expenditures – $1,672,926 in all – went toward “Program Services,” or non-managerial expenses. While this does represent a relatively small sum for a leading nationwide charity, eating disorders are notoriously underfunded in most respects. So thus far, no major quarrels.
The paradigm shift of sorts occurred when I looked more closely at what NEDA’s Program Services actually entail. For brevity’s sake, I won’t go into detail (you can read about them here), but essentially, they encompass support and referral hotlines, educational toolkits, and – predictably – plenty of programming around media literacy. All of this is fine, of course. But I was, frankly, aghast to discover that to date, NEDA has allocated zero percent of its programming expenditure to research funding. Zero. Zero as in the notorious “size zero.” Zero as in the number of known causal links between media exposure and the development of a clinical eating disorder. Zero as in the number of empirically-validated treatments for adult Anorexia Nervosa. Zero.
By this point, I am feeling up in arms, which for me is not an unfamiliar state (I did a lot of eye-rolling during “assertiveness” groups in treatment, if you hadn’t guessed as much). But I must emphasize that, in reality, this has very little to do with NEDA itself. As a private charity, NEDA is wholly entitled to operate under whatever modus operandi it sees fit. I should also note that NEDA has, in fact, recently launched a research funding initiative, and has raised approximately $90,000 to date, although none of this has thus far been allocated in the form of scientific grants. So while I’m not really angry at NEDA, I am angry at the whole damned proverbial System. Maybe I was angry all along, but it simply hadn’t coalesced to the point where I could identify, clearly, the source of my discontent.
I’m angry because I live in a major academic-medical research hub and have, over the past two years, received some of the best ED treatment money can buy. And yet for all of that money and time, most of the care I’ve received still falls under the umbrella of “complementary and alternative medicine,” because there’s simply nothing else out there. I worked, for over three years, in the field of Autism Spectrum Disorder research, and thus became familiar with another national disease-advocacy organization, Autism Speaks. While I am thrilled that AS granted over $25 million in research dollars in 2011, I am angry that no comparable nonprofit raised even a fraction of a percent of this amount to fund research into the causation, prevention, or treatment of eating disorders – which kill up to 1 in 5 sufferers – during this same period. I am frustrated that for all of the celebrities who have bravely shared their struggles with EDs in recent years, not one has lobbied before Congress for increased NIH funding, or launched a new private research initiative. Where in the hell is our Michael J. Fox?
I am beyond angry that by the time I wake up tomorrow, someone else will certainly have died as a result of their eating disorder, and yet there still will be no one speaking unequivocally from a national stage about ED genetics, neuroscience, the importance of early intervention, Family-Based Treatment, or much of anything besides the evils of Photoshop and the ill-defined need to “raise awareness.”
Above all else, I am angry – and saddened – to know that by the time I wake up tomorrow, many brave and compassionate women, all of whom I have been blessed to welcome into my life, will be heading out to that high school track with the commendable aim of making a real difference in lives of other sufferers, yet almost certainly unaware that the money they have raised will not support the types of programming most likely to make such a difference. I will, of course, cheer them in their efforts and applaud their own literal and figurative steps toward recovery. But even if I could – no, I would not walk beside them. And spoken as a wannabe activist, I have to say that that’s a damn shame.
Holly J. Arthur is currently completing her Master’s degree in Mind, Brain, and Education at the Harvard Graduate School of Education. She previously coordinated community outreach efforts for Autism Spectrum Disorder research studies, and plans to pursue a career in the field of health communication. She can be reached at email@example.com.