The Final Straw: Political + Legal Action

This is the last in my series of articles sharing stories about the levels of advocacy in health care. I obviously love talking about patient advocacy and am happy to present about this topic to patient groups....

This article is about the top two levels:?Political Action and Legal.? Being at the top of the pyramid doesn’t mean these levels are the most important. It just means that patients end up undertaking this type of action when they have exhausted all other routes. Political action can also be directed at policy makers for strategic issues. And going the legal route is generally the last resort when rights have been violated, or discrimination or harm has occurred.

Political Action – This includes fun stuff like letter-writing campaigns and phone calls to your local government official and/or Health Minister. Now, I used to work at a Department of Health and citizen letters got top priority to get answered. Sadly, this was 30 years ago and today there seems to be no mandate for bureaucrats to even answer patient correspondence.

I’ve been involved with two health advocacy political campaigns.? One was called All Kids Deserve Health Services, where we managed to get a question asked in the provincial legislature that prevented the closure of our children's Down Syndrome Medical Clinic. That campaign included a website, social media accounts, media coverage and a petition.?

My husband and I ran the Ready for My Shot campaign that my husband in 2021. This campaign contained many elements, including our son Aaron posing a question to the Health Minister about why disabled people weren’t prioritized for COVID shots at a CBC Town Hall. ?The first part of this campaign was a political one, aimed at Canada's provincial Public Health Officers and Health Ministers.?The second phase was educational, to encourage folks to get vaccinated. It included submissions by self-advocates, social media, a poster, a video and media interviews.

Eventually everybody was offered the first COVID vaccine, including people with intellectual disabilities. So did Ready for My Shot move the needle on prioritizing people who were intellectually disabled?? Since we will never know what goes on the heads of policy makers, I don’t know. I do know that this campaign provided an outlet for self-advocates to speak up for their right to health care. This is an important outcome.

I’ve never been successful in the?legal route.?We did file a Human Rights Complaint for the?Ready for My Shot campaign, citing discrimination in excluding people with intellectual disabilities for the initial COVID vaccines. The process was so long and onerous, and we didn’t have the money to hire our own lawyers, so we withdrew the complaint. I realized the human rights complaint process is build so people give up and go away.

Legal is an area I don’t know much about. But I do know of families who have engaged lawyers in the disability world. Health care professionals and organizations are already all lawyered up. For lay-people who take the legal path, it takes years and thousands of dollars. (Irony alert: time and money is in short supply for people who are sick or caregiving).? ??

Final Words

No matter what level of advocacy that you engage with, the first step is to write down what happened with your health care experience. It is helpful to be clear about what action you want from the parties in question. What do you want them to do so what happened to you doesn’t happen to other patients? What is their take-away action? It is also helpful to find a community of folks who have experienced similar issues - this peer support is really important in high-stakes, high-pressure work like political or legal action.?

The system puts so many barriers in place for us to even share stories and feedback that patients and caregivers just give up and go away. This is by design.

If you are in a place where your emotional and physical health allows you to dig and lobby to find audiences where you share your experience, there’s a chance that your story can influence (desperately needed) health care change. I say there's a chance because we never really know what effect our stories have.

But breaking the silence that the health system imposes on patients (and staff too, but that's another topic for another day) is a good place to start. There's a huge spectrum of types of advocacy, from talking to your nurse at point of care, or writing in your journal about your story, all the way to speaking at a rally or going to court and everything in between.

You can be quiet or loud. We need it all.