the economics of eating disorder activism: what it costs
It doesn't cost a thing to become an eating disorder advocate or activist. There's no qualifications and the price of entry is an interest in the topic. The hours are flexible, the working conditions are, too. The rewards: they vary.
You can start a blog or Twitter feed or participate in Facebook groups for free on your own time and build quite a voice. Anyone can call a legislator, write a letter to a policy-maker, or email a journalist. With time, relationships, and a point of view your voice can really be heard and have influence and be part of larger streams of chatter. I wish more people did, because to go viral a message has to have people to infect!
After a while the time can become expensive, if it takes away from paid work or requires you to pay others to do things you would do yourself. Time is expensive it it means your partner has to work longer or at different work to enable you to do your advocacy. There is an opportunity cost, as well, for having a blank resume when you want to go back to paid work.
There are expenses to advocacy, even at your laptop. Free websites don't look or act like paid ones. Business cards and flyers and postage and newspaper ads all add up. Buying books and access to articles to educate ourselves is expensive. Printer ink, subscriptions, phone calls, software, legal services, donations, memberships: they cost money.
But travel, that's the kicker. Being an advocate and activist (slightly different things) means being there. You can gather a group to meet at the local pizza shop every month for the price of a slice, of course, but in order to be part of the larger advocacy world you have to show up where others are. especially at conferences.
ICED conference, Boston, 2015
Registration for non-members: $640 (membership is $250 a year)
Hotel $239/night for 3 nights but really need 4 = $717
Meals $20 x 6 = $120 (bare minimum, but the conference doesn't serve many free meals)
Transfers and airfare = at least $400
Total: $1877 not including beer
NEDA conference, San Antonio, 2014
Hotel $184 x 3 nights = 552
Meals: $15 x 6 = $90
Transfers and airfare = $400
Total: $ 1492 not including margaritas
Drive there, find a roommate, eat peanut butter sandwiches, and stay in a sketchy AirB & B nearby, and you can cut a bunch of that down, but it's still a 4-5 day stretch away from home spending money. This is an extreme luxury for most parents and patient advocates, families who have often been depleted by treatment costs.
At over $1500US a trip, an advocate can join the fray at a conference one time. That's one trip, and it often runs much more, and that's only for trips in your own country. One trip does not an advocate make. It can take years of showing up to build relationships to the level that you can make change or have an influence. It takes time to learn the players, gain trust and alliances, to be invited to the table, and figure out where you want to put your energy.
So, how do people pay for being an advocate? Specifically, how do parents do so?
Mostly, we pay out of our own family budgets. I've been a full time advocate for most of the past decade and it has been expensive. Not only have I not taken paid work, even with FEAST paying my expenses for travel and materials for several of those years it is still an luxury activity. Sales for my books, about $1 net each, do not scratch the surface: that is just a way to pay a few of my advocacy expenses. Any money I earn, plus a great deal more, goes into paying to be an eating disorder advocate. When I worked and traveled for FEAST I had no salary -- FEAST's staff is all volunteer -- and no other job. I'm not unusual here: none of the authors or independent advocates I know make any money for their work: we SPEND to be out there.
When we are invited to speak, which are priceless opportunities to get the word out, we almost always PAY to attend the event and to travel there, plus registration.
When we volunteer for committees and are invited onto boards that time and money is our own to give, but our responsibility to pay.
Let's not even bring up the cost of nice shoes!
Unlike our fellow advocates who are professionals in the field we do not have our travel and registration subsidized and we do not get professional accreditation or fulfill licensing requirements by attending events. It isn't a professional expense and doesn't go on our resume.
So, why am I telling you this? It isn't to whine about my finances or to complain. That has been my family's choice.
I have two points. One is to laud the volunteers in mental health advocacy and eating disorder advocacy. You can't imagine how much passion and commitment this work requires. Parents who do it are doing so purely to help others avoid pain. I don't think the public understands the personal sacrifice and commitment that advocates offer willingly. I don't think armchair observers understand that those out there showing up also represent the vast majority who don't have the luxury of time and money to get out there and influence the conversation and policy.
This goes for parent advocates and also patient advocates. They take on often full-time work for no pay and no benefits JUST TO HELP OTHERS. They start foundations and organize events and run websites and write books to help others, not for fame or fortune or advancement. They feel that change is needed and they feel a responsibility to be part of it.
So when you are asked to "like" a post or retweet or make a donation keep in mind that those making those actions happen are almost always volunteers giving of themselves to help you. When you see an advocate out there organizing something know that they are putting their money and their personal life into it. If you ever wonder "why isn't someone doing X" remember that someone has to step up and do and pay for it.
I don't know what the solution is. We need parents and other advocates out there part of policy-making and advocacy. Our voices matter and make a difference. But the price is high and there is no angel to pay for it. There are so many wonderful advocates out there who have he passion and skills but can't afford financially to do it. Without patient activists and parent activist those voices don't get heard and policy goes on without their point of view. Without those volunteers most advocacy doesn't happen. Phones aren't answered, events don't happen, and website searches can only bring up what people have created. Policy-makers and journalists don't know the difference between well-paid nonsense and real lived experience.
Money may seem like the last thing to matter when it comes to advocacy, but it matters a great deal.
**Two groups asked me to be on panels to speak at AED this year, and both were accepted. I cashed in all my air miles and piggy bank, but still can't afford it. I applied for and was awarded an AED carer scholarship for which I am very grateful. It doesn't cover the whole expense but it really helps.