Performance Activism

I started my work in patient advocacy in 2017 but along the way, there have been moments of pause that make me question people's true intentions.

Performance activism 

Performance activism can be seen on social media when some celebrities and influencers participate in performative 'wokeness' but continue to make harmful choices or tone-deaf statements that are deemed hurtful to certain groups. We all know by now that not everyone has their heart in the right place. Many pretend to care for a cause for notoriety, fame, clout, or money.

Another example is corporations gaining publicity when they incorporate rainbows in their logos to show support for the LGBTQ community but donate money to legislators who are actively trying to diminish the safety and human rights of LGBTQ people. Some companies present the "love is love" messaging so they can be in good standing in the public eye but true ally-ship is not showmanship. It is more about self-reflecting to assess how you are contributing to injustices, whether intentional or not.

The dangers of performance activism

One of the dangers of performance activism is it detracts from the real issue. When people are fixated on likes and online support, it slows down real activism because the performance and noise will not bring about actual change. Advocacy and activism are not all sunshine and rainbows; it is hard work and many warriors have lost their lives while advocating for this marginalized group and community. Sickle cell anemia is a debilitating blood disease that should not be masked in humor or ridicule.

Another danger is the question of authenticity. In many cases, it purports misinformation instead of bringing focus to the broken systems that activists and advocates are eager to reform. The US healthcare system is riddled with inequities, particularly for black and brown patients who face discrimination and mistreatment that continue to persist today.

My final thoughts

I believe that there should be no prize for doing the right thing and I say this knowing that we live in a world that's riddled with the need for instant gratification. For every piece of content or any advocacy project I choose to support in the sickle cell space, one question is top of mind - What is the intent behind this? If you want to be an advocate or an activist, your primary goal should always be to remove barriers and foster positive change for the next generation.

I can only hope that the next time someone chooses to feature a chronic illness or rare disease, they educate themselves on the cause, find ways to support it, and become involved in creating a solution. With the recent spike in mental illness and suicide attempts, it is now required to provide content warnings and mental health disclaimers.

Real advocacy is a marathon, not a sprint. It's not about capitalizing on paid advertising or using our pain to crack jokes. It is about educating the public, helping to raise awareness, debunking myths about sickle cell anemia, encouraging policy reform, and changing the healthcare system for the better.