Blog: Joining the Advocacy Bus
Image: pch.vector, Freepik
Empowering Change, One Journey at a Time
In a world that constantly presents us with challenges and issues demanding attention it is essential to find meaningful ways to contribute and drive positive change. Advocacy has emerged as a powerful force for critical issues facing our rare disease community, giving voice to the unheard and fighting for equity to ensure the greatest quality of life for those living with a rare disease. Advocacy is a marathon, not a sprint, and it will be a repetitive marathon that you can’t seem to finish, until that one day when it all comes together and you cross that line.
Advocacy encompasses a range of activities aimed at influencing policies, practices and attitudes that address societal concerns to create a fairer, more inclusive world. Advocates come in many shaped and sizes, and champion many different causes. Whether its human rights, the environment, sustainability, education healthcare access, gender equality or rare disease, you all strive to raise awareness, shape public opinion and leverage your movement to create change through lobbying, grassroots initiatives, public campaigns and other impactful strategies.
The biggest hurdle when joining the bus is that you can’t do it alone, or your route will be long, and winding and you may hit many potholes that will burst your tyres. Advocacy works best when your bus is full of likeminded people who can assist you along the way with your messaging or amplifying your voice to the right contact at the right time. Everyone on the bus comes with a different set of unique skills that will ensure your bus gets to its final destination. But most of all you need people who are extremely passionate about your cause, because if they are not, then they are passengers that you don’t need or want on your bus as it will only slow you down. Stop! Let them off (tell them to get off if you need to) and only accept passengers who can assist you in your journey on the bus to complete your goal.
How to Join the Advocacy Bus??
Identify Your Passion- begin by identifying your cause or issue that ignites your passion. Reflect on the causes or issues that resonate with you. Where are the areas that you believe that change is most needed, and the impact you wish to make. Your commitment and passion will fuel your journey.
Educate yourself – Make sure you dive deep into your subject matter related to your cause. Read books, articles and collect as much relevant real-world evidence relating to your cause as possible so you can report to the wider community ensuring understanding of unmet needs and challenges your community faces.
Connect with Existing Advocacy Organisations- seek out people and their organisations who have achieved success previous to you. Learn what they did well, and what they didn’t do well and try and replicate these activities. Don’t reinvent the wheel! Stick to what has worked before you, as these real-world insights have already laid the foundation of practical change.
Engage your local Community – Ask your community for their support. Educate them at the start and gain their buy in. Ask then for their help and tell them with out their valuable insights, you can’t prove unmet need within the community. Inform them that you will most likely be asking them questions via surveys over the next few years, and their input will drastically increase the chances of change happening sooner rather than later. At all stages make sure you update your community once the information is collected and remember to say THANK YOU! These people also have a vested interest and when you do say thank you, they feel empowered for helping your bus move in the right direction!
Find Your Voice - Develop effective communication skills to articulate your advocacy message clearly and persuasively. Craft powerful narratives, tell stories of people within your community, and utilise media, social media and online platforms to raise awareness about your cause! Engage in as many conversations as possible to create a greater impact.
Communicate and Collaborate – Seek opportunities to collaborate with other advocates, organisations, policymakers and those that will listen to your story. Working together strengthens your collective voice and expands your reach. Host events, workshops, webinars and campaigns to activate support and foster community engagement.
Embrace Patience and Persistence – As mentioned advocacy is a marathon, that will require your perseverance. Change takes time and setbacks are part of the journey. Your resilience will be tested on many occasions, but stay in your lane, stay committed and be agile and adaptable and you will achieve anything you set out to do!!
So, my question to you is, “Are YOU on the bus??”