Ten years ago, Australian Prime Minister Tony Abbott appointed her Minister for Women. Despite the carefully constructed rhetoric spouted in press releases and press conferences, much has been written about the message this sent and what the government of the time actually thought about women. . But this post is not a lesson in Australian politics. It just set the stage for me to talk about the conspiratorial ways in which people whose voices should be heard are silenced.
Diabetes advocacy exists in an environment where the voices of those most affected by diabetes are often resisted, sometimes in rather despicable ways. The wolf in sheep’s clothing in advocacy comes in the form of people who claim to be “spokespeople” for people with diabetes, but this is especially problematic because we all have our own voices. Because you don’t need someone else to speak for you. Diabetes-adjacent status does not entitle anyone to speak on our behalf. In fact, the very idea that anyone thinks they can represent the people they are supposed to be at the center of is offensive.
By the way, that’s important. When our insights go unheeded, we find ourselves trapped in a cycle of misunderstanding and misrepresentation. Our views need to be heard because they are a necessary part of the reality of diabetes. When people with diabetes are asked why they need to invest in better diabetes care, improve access to medicines and technology, and increase funding for diabetes research, We talk about how improved care can lead to improved engagement with health care professionals and reduced emotions. Your load will be reduced, and as a result, you will have more time to spend with your loved ones and be more productive at work. We’ll talk about how increased access means less burden for us and what that means in our real lives. And we’ll talk about how research has changed our lives over the years, providing an entry point to help us better understand diabetes and make more informed decisions. We truly speak of hope because we grasp it with both hands.
Those who speak “on our behalf” inevitably focus on reducing the burden on the health care system (as if we are to blame for hospitals being overcrowded). (increasing the stigma of diabetes) or resorting to listing diabetes-related complications. Familiar metaphors like shopping lists are effective at scaring us. I have been a spokesperson for diabetes organizations for many years and have always made sure that the everyday realities of diabetes are part of the discussion, not just rehearsed talking points that say nothing about the people behind the numbers. I’m here. More importantly, I learned early on that in advocating for myself, it wasn’t my voice that should be heard, and I made sure I had a network that I could reach out to to find the right people. is. I would say that about 90% of the time when I’m asked to comment, I refer the questioner to someone who is in a much better position to share their lived experience.
This year brought a new role where it was essential for me to be in the background. I am now in the incredibly fortunate position of working with incredible grassroots activists and community advocates to do truly life-changing work for people with diabetes across India. I feel that there is. I’m not here to tell their stories or their work. I don’t mean to interpret that impartially. I have more than enough self-awareness to know that. I recognize them as the protagonists of their stories. These are the people who live the experience, do groundbreaking work, and drive change. My responsibility is to be an ally and supporter, doing everything I can to amplify their voices, not to drown them out. Perhaps this speaks to my own confidence in my abilities as an advocate, that I don’t feel threatened by others who are speaking out. Effective advocacy is fostered through collaboration and shared leadership. I admire people in the advocacy world who are willing to step back and take action. I think it’s safe to say that other people see people doing things like that too. And those who don’t.
There are more insidious and harmful ways of silencing our voices. Let’s go back to the Prime Minister for a moment. I mentioned earlier that he became a female minister. However, he didn’t do that. In fact, he abolished the position and moved it to the Prime Minister’s Office and Cabinet Office, removing the seniority and decision-making authority it had previously held. True, he appointed Michaela Cash as an advisor, but this was little more than a token exercise. The reality is that the prime minister ultimately controls decisions that affect women. Mr Abbott became furious when questioned about his own decision, refusing to listen to the countless women and women’s groups who criticized the move, and instead responded defensively.
I use this as an example when consulting organizations about effective engagement and how to address comments from the communities they work with. Receiving criticism can be unpleasant. However, by being open to community response and generous feedback, it becomes an opportunity for improvement and collaboration, rather than a threat to be neutralized. Organizations respond by discrediting or questioning the motives and expertise of people with lived experience, or by suggesting that negative comments are part of an effort backed by ulterior motives. When you do, it’s very unfortunate. It is disheartening to hear the implication that individuals offering critical perspectives are simply being influenced by others, ignoring their ability to form independent thoughts and opinions. This is just another way in which community voices are effectively silenced, proving to the community that contributions from those who should be heard are not valued at all.
I often talk about alliances as a central force that includes and amplifies the voices of people with lived experiences, rather than excluding or silencing them. Allyship is actively working to put people with diabetes at the forefront of the conversation. Featuring them in decision-making at all levels. Put them in rooms where things happen. True allyship involves listening to and acting on the needs and concerns of people with diabetes, even when it may be difficult to hear what is being said. It’s not some great window dressing. we see through it.
I wrote this piece while listening to Black Oak Ensembles’ 2019 album “Silenced Voices”. It is wonderful.