Originally published by The Insighters® on October 18th, 2024: https://theinsighters.com/blog-posts/13
As I reflect on my HealtheVoices experience this year on the conference’s 10-year anniversary, I see a bastion of hope, of love, and of support for years to come. The love Johnson & Johnson and the HealtheVoices team has showered upon me is something I hold near and dear to my heart. And this year being the first year The Insighters® was able to partner has been especially meaningful to bring research opportunities forward to the patient community.
I believe in inroads, in partnerships, and in camaraderie both in the patient advocacy community and amongst industry in the chronic illness space.
Why? Because we can’t do this alone or in a bubble. According to the NIH, people with disabilities constitute 27% of the U.S. population, making us the country’s largest minority group. So why should we advocate alone when there are so many of us with common bonds and threads? The truth is there is power in building community, and that’s what J&J’s HealtheVoices does year after year. HealtheVoices brings us all together so that we can laugh together, cry together, dance together, and ultimately, work together to create awareness and education around the things that matter most to us: being seen and heard by those who may not understand the chronic illness or disability community and what we go through every single day.
During this year’s HealtheVoices conference, the sessions that struck me most were around art, creativity, and entertainment in disability. Many of us as advocates are so talented in different ways, whether that’s painting, sculpting, dancing, writing, fashion design (and even in being comedians).
The key takeaway was that it’s important to find that catharsis, or that release, by being our authentic selves and to make our art disability-centric in the process.
Listening to advocates Jahlove Serrano, Double Baggin It, Jeri Ward, and Antoine Gibson in the The Art of Advocacy: Entertainment as Education session reflected on how much art and entertainment is woven into the tapestry of our health and hospitalizations through television, the radio, and the internet. Jahlove shared how music can be a form of “healing and infusing love for the fallen soldiers of the HIV/AIDS epidemic.” And Double Baggin It emphasized how they “took the stage back with gusto after ostomy surgery” through their improv and comedy. I remember sitting in the audience in awe of the talent we have at HealtheVoices and the commonality of the pain we share that we have pulled ourselves through with grit and resilience.
There was also a session called Accessible Advocacy: Creativity & Inclusion about blindness that really opened my eyes towards how we can create content that’s more accessible for all types of disabilities, including for those with low or no vision. In this session, Rishika Kartik, a student majoring in Disability & Design, and Anne Mok, an advocate for blindness, shared some concepts that blew my mind. We tried on different pairs of glasses to experience blindness firsthand as a spectrum between no vision to low or impaired vision. One pair of glasses had a very small hole in the center through which we could see, another had a blind spot in the middle so we could only see around it, and the last frame had spots all over the lenses obstructing us from seeing fully. Through each of these pairs of glasses, we could see but not well, and this really brought to life that the concepts of “blindness [and disability in general] are a spectrum and a complex identity that shape us into who we are.”
These glasses, and really our conditions, “give us a new way of seeing who we actually are” to allow us to become our truest, most authentic selves.
The takeaways coming out of HealtheVoices for me were profound. I left that session keeping the following thoughts at the forefront of my heart and soul:
- Embrace and normalize disability as part of the human experience
- Prioritize accessibility as an opportunity for inclusivity and creativity
- Create accessible content to enhance the experiences for all users
- Find ways to cope, heal, and release the trauma and grief of chronic illness and disability through artistic expression
I left HealtheVoices on its 10th anniversary with my heart fuller than ever. And I believe through our collaborations and collective healing, we can rise higher together. This healing, this support, this community are why we advocate 10 years into the HealtheVoices journey.
So, own your Crohn’s, own your chronic illnesses and disabilities, and advocate for creating stronger bridges of support to help heal our community and bring awareness and education to the forefront of healthcare.
