I doubt that people are aware of the costs, because it's all happening behind the scenes and in private FB and Slack etc. groups that people who aren't part of it aren't aware of.
But all organizations' costs and work are ultimately are hidden. (After all, no one understands why research costs as much as it does!) I know we need to do a better job of bringing people into our offices, helping them see what we are actually doing, but that in itself is a lot of work and I'm always torn between taking the time and effort to do that v. executing on all that we have to get done.
It's incredibly stressful promising people the salaries they need for their food, clothing and shelter. It's the hardest part of running an organization. This is a major part of why
I don't draw a salary from my activism. I absolutely deserve to (we all do) and
it's a privilege I have that many do not that I do not need to in order to survive. I don't have kids (not by choice), live very modestly (in a 20 ft x 10 ft loft above our office), and have a partner who works. I'd much rather spend my time doing the work and raising money to pay for and support a larger staff for more impact than have to fundraise to pay myself!
The Time for Unrest campaign, which kicked off everything happening in Parliament this year had a staff of five + publicists, supported by sales of the film, contributions from people in the UK, and grants/donations from the US. It was enormously expensive but I think impactful! We're looking for
one person to continue the UK advocacy and medical outreach work under the auspices of #MEAction. The money we are raising covers their salary, taxes, etc. and expenses for the year.
And no, Parliament didn't just decide to start doing work this year. The film's impact and reach didn't just organically happen. Many, many people have been working very, very hard. But people crash, take breaks, burn out, and no one volunteer can take the responsibility of project managing all of this on their own. However, a paid staff person
could take on that responsibility and make the work of all our volunteers more impactful, effective, and continuous. We could do 10x what we are currently doing in the UK with just ONE staff person to support them.
Re: collaborations. Fundamentally, we are trying to collaborate with everyone in Forward ME for greatest impact. We need to find a way to do that while making very clear our core values and public positions, ensuring that they reflect our community's needs and desires, and are never compromised. And that we know when it is best/most strategic/right to act independently. I do not have a problem working with any organization as long as the messages and actions of our collaborative work actually align with our values and positions. Nor do I have a problem un-aligning when they do not.
It's important to understand that #MEAction isn't a person or a unitary actor. It's dozens (and really, now, hundreds) of volunteers, all with different points of view and understandings of how to be most effective, trying to work together (virtually), and often under tight deadlines. As we've grown, I've moved farther and farther away from the nitty gritty of every action. This has led to some missteps the last two weeks that honestly, I would have prevented if I could have and might have been prevented if our UK team wasn't on their own, working also on #MillionsMissing, managing their energy and post-May crashes, etc.
Internally, we are trying to figure out how to institute the processes we need to ensure that there is proper oversight and process for everything we produce and put into the world, even as we retain the spirit of participation, volunteerism, amid the inherent chaos that is the dip in and out again, on and off again nature of our bodies.
This would be so much more possible if we had more staff capacity! Process and communication are vital but take an incredible amount of time and capacity, both of which are always in short supply, especially with volunteers who have unpredictable schedules and health.
And yet, I am ultimately responsible for every thing that we do, even if I don't always know that we're doing it
The buck really does stop with me. I think what I am going to ask (especially as I head into surgery Tuesday – I may be out of commission for a few weeks and I've already been really, really ill these last six weeks) is a little bit of forbearance. At the heart of everything is quite simply lack of capacity. But we are going to work over the next several weeks to clarify everything, improve our messaging, and I hope make some amendments to the Parliamentary briefing document. (I don't know what is possible but we are exploring that.)
I would also like to add that I'm finding this space enormously constructive. It's really helpful to get feedback from patients who are engaged and knowledgeable but who are not a part of the organization. When you're in the thick of it, it's very hard to know what people can/cannot see from the outside. Out of this discussion is already coming some ideas re: how to communicate more effectively (subject, as always, to the ever present limits of capacity...). Just wanted to say that I appreciate you all.
It just makes fundraising harder.
