Updated: Nov 26
This essay is not about dissuading people from advocating, either from inside or outside the system. But I want to tell my truth about the costs to being an advocate. There is a dark side. This essay is about finding your own circle of support and sharing the burden of advocacy, because there is a high cost to those who stick their necks out in the public eye.
If you are a patient or a caregiver, you get told constantly that you must advocate. I've had social workers, physicians, nurses and teachers all tell me that it is my job to advocate. You have to advocate to get essential medical care. You have to advocate for your child to have an education or even be given basic human rights. Advocating often starts with a personal struggle, but then it can evolve into advocating for broader system change, which quickly morphs into something you are expected to do all the time.
The catch 22 is this: Institutions like governments, hospitals or schools will never change on their own. They only change because they are forced to change. Enter the advocates, the ones who force the change.
I’ve been an advocate in health care for a very long time. I’ve had some successes but many failures, too. I wrote an essay three years ago about this called To What End?
I want to be honest with you. There is a professional, family and personal cost to advocacy. It doesn't mean I'm going to stop. In fact, my next book is both a hopeful and realistic one - all about imagining the health care world I want to see. I want this essay to open up a conversation about the cost to advocacy. If you are a rabble-rouser, this one's for you.
Once upon a time, I worked for a children’s hospital, doing the most beloved of all my work – coaching families to share their stories. My son also received care at the same hospital as they had a Down syndrome clinic for children and youth. This was a clinic that began because of the magic combination of a compassionate leader coupled with the grit of families who advocated for a specialized clinic for many years. This clinic provided coordinated medical care from a nurse and a pediatrician, who cared for hundreds of patients.
One day, I caught wind that my boss at the time (a new leader at the hospital) was planning on shutting down my son’s clinic by laying off the nurse coordinator. No nurse coordinator, no clinic.
I was in a terrible pickle. Families like mine were terrified at the notion of losing services. Years went into building this clinic, which was family-centred at its core. If we lost it, we knew we’d never get it back.
I had a serious conflict of interest. I could not organize with families to fight against a hospital decision that was made by the person who signed my contract. So tearfully I had to resign from my position so I could help save the clinic. I lost my job because of it.
The decision to lay off the nurse was reversed after seven days of an intense family campaign that included media appearances, working with the government opposition, petitions, and letter-writing. The clinic was saved, but I lost my job. I still consider this a win.
I tell you this story to remind you that the next time you ask someone to advocate or make the assumption that it is their duty to advocate, there are real costs to fighting the system. I am not going to lie and tell you if you are an advocate inside the system, you won’t lose your job. There is risk to this work.
Now I’m on my own, skirting around the margins of organizations, still squawking about change. Someone today called me a lone ranger, which is pretty accurate. I’ve tried from the inside and now I’m on the outside, unmuzzled to say what I need to say without fear of losing my job. There’s freedom in that, but also intense loneliness and frustration too (and a lack of steady income). I know I’ve lost speaking and workshop opportunities because risk-adverse health organizations don’t want to hear my truth. I’ve accepted that this is the price I pay. My only solace is that I have other maverick advocates in my life who keep me good company.
There is a family cost to advocacy too. My husband and I began the Ready for My Shot campaign at the beginning of 2021. This advocacy effort was in response to our government’s exclusion of people with developmental disabilities on the priority list for COVID vaccinations. That campaign ran for three months and took a chunk out of our whole family - financially and spiritually.
Our son Aaron understood the issues from the campaign and spoke in the media about his community’s need to get the COVID vaccines. He consented to being interviewed, but there was a cost to him. (Anyone who says we forced Aaron to speak to the media doesn’t know Aaron very well).
Self-advocacy is damn hard personal work. We are still healing from this campaign many months later. We are helping Aaron set boundaries for his own news consumption, which had gotten out of control during the campaign. I’m not going to share Aaron’s story, because it is his to tell, but I will say that our children carefully watch what we are doing – no matter their age or whether they communicate verbally or not. There is a lot of emotional energy swallowed up in advocacy work that can take energy away from a family.
If we get caught up in a cause, our children will too. It is a powerful thing to stand up and advocate for yourself and your community. But it also can take a piece of your family's collective heart.
I can guarantee that many people won’t appreciate it if you gather up all your courage and stand up for what you believe in. Trust me, you will not be embraced by everyone.
You will be told that you are too big for your britches. You will be subject to a ‘how dare she,’ even from people in your own community.
Some people will say ‘stay in your lane and shut up’, while others will demand that you do more. You can’t win.
The world of advocates is not necessarily a supportive one. We aren't sitting around in a circle singing Kumbaya. There is rejection: people will promise to support you and then do nothing. There is a pecking order to advocates - folks with high profiles often ignore those with smaller platforms. It can be cut-throat and competitive because there are egos involved. It is imperative to find people who are secure enough within themselves to not be threatened by your work, who respect if you say, no, I can’t do this right now. Those are your people. Hold them close.
People will beat you up on-line. You will then find out quickly who your real friends are – and they aren’t the people who join in to pile on top of you, nor are they those who are silent and therefore complicit. You will clearly see the people who don’t clap for you and you will spend time digging knives out of your back. It isn’t pleasant.
This is all gross if you are someone like me, a reluctant advocate who is deeply uncomfortable with not being liked. I don’t want a thick skin, as I learned to appreciate the qualities that go along with my thin skin, but I won’t lie to you and say this doesn’t hurt. My circle of people is very small. But I appreciate every single person who has stood by me as I have been speaking my truth. I hope you know who you are.
My Call to Action for You
The pandemic has made me especially weary and I know that others who speak up are tired too. If you are one of those people, I see you.
My message to you is that all advocates in the world need allies. I’m not demanding that you put your job on the line or speak up with the risk of harming your own family or being hated. It is for you to decide what cost you can bear. I am not going to tell you what to do.
But if every single person engaged in one action to advocate for a better world, the burden would not just be amongst a few vocal people. Health care advocates during COVID are cracked and damaged. The load would be better shared if you as an individual participated in one thing: writing a letter, signing a petition, sharing your own story. Most of all, we need you to support someone who is speaking up behind the scenes: offer a kind word. Buy them a coffee. Help build advocates up. Don't tear them down. Advocacy would be sustainable if it is shared and not just be carried on the backs of a few.
Before you tell someone that they need to advocate, pause to think about the weight of what you are asking them to do. Most importantly, consider what, as an individual, you can do. We need each other. We must contribute our own gifts to mend this beautiful broken world. Every little bit counts.
The eBook version of my new book, Ducks in a Row: Health Care Reimagined, is now available for pre-order at Amazon, Kobo and Google. Both the paperback and eBook will be released on January 18, 2022. Visit my book page for more information. Interested in joining my community? Sign up for my regular emails here!