Happy PRIDE Month, YFA! I feel a little uncomfortable with that wording. Yes, there is so much to celebrate in the progress that has been achieved, and the queer community knows how to celebrate like few others. But there is also so much to be concerned about and so much work to be done. (I promise this is relevant to arthritis. If you don’t see it yet, just bear with me.)
If you follow me personally on social media, you may know that there are some crazy things happening in our school district. This is the town where I grew up. And after 20 years in Baltimore City (which I love, with all of its grit and charm and beauty and challenges), we moved closer to family. (I’m working on a memoir about that experience, so you’ll have to wait if you want to hear more about it.) My kids would have a neighborhood without traffic to play in, access to a great school system, and most importantly, they would grow up seeing more family on a weekly basis. It didn’t hurt that we would also have the social and structural support that nearby family provides (arthritis relevance here too).
But the social dynamics in the schools have not advanced with the times as much as I had expected. It is a mostly white, Christian, affluent, politically centrist (but slightly right-leaning) community. But in the '80s and '90s, those with other identities were generally treated as welcome neighbors. As politics across the country have become more polarized, so has my community, and so has the school district. School board meetings routinely make the national news for the inflammatory comments and decisions that are made, and the failure to denounce bad behavior. There have been multiple decisions that the Pennsylvania ACLU has labelled as a hostile environment, specifically for queer students. Their legal director, Witold Walczak stated, “We haven’t looked and done the legal analysis on each of those discrete actions, but when you take them all together, it’s hard not to conclude that this is a systemic assault on a protected group of students. That raises real concerns about whether the district is creating a hostile educational environment, which is illegal under federal anti-discrimination and civil rights laws.”
I have previously shared, with my daughter’s permission, that she identifies as bisexual and is therefore part of this protected group of students who are not being protected. PRIDE flags are being removed from classrooms and from students’ hands. Preferred names and pronouns are being rejected. Award-winning books that have been a lifeline for queer students are listed for a potential library ban. A beloved queer ally on the faculty has been suspended without explanation.
Some might wonder why I would stay in this environment rather than moving my kids to a more queer-friendly school district, especially since I identify as queer myself and know from experience how it feels to see and hear messages that marginalize my identity. One reason is that my family is still here, which is invaluable. Another is that we can’t always run away from hostile environments. As a Jewish American, I know the importance of leaving a place when it is too unsafe to stay. But where is the balance between the need to flee and the importance of staying to challenge/change the system despite the discomfort?
Teaching my kids what it looks like to stand up for the vulnerable and marginalized among us- to speak truth to power even when the odds are long- is an opportunity. Teaching them how to notice the discomfort and use it as a motivation for discerned action will serve them for a lifetime. Helping them to know their own unconditional worth despite what they may see and hear around them transcends the limitations of their school library offerings. (Do you see the arthritis parallels yet?)
In recent months, I have started drafting a proposal for the first of 3 grants in a multi-year project that would develop and evaluate a yoga intervention for kids with juvenile idiopathic arthritis. If you search a research database now, you will not see a single paper on this topic- not a case study, not a clinical perspective, not a pilot. It just isn’t there. But I have worked with countless adults who were diagnosed with arthritis at a young age and every one of them wishes that they were exposed to yoga sooner. I have also worked with hundreds of kids with arthritis and their parents are searching for anything beyond their medical care that might help their kids to be resilient and to thrive.
Kids with arthritis are facing a hostile environment. Even if they are fortunate enough to have a supportive family, access to quality healthcare, and an understanding school system, they will face countless challenges because of their arthritis. While the resources available for these kids has improved dramatically in recent decades, there is still a lot of work to do. Imagine how the trajectory of life with arthritis might be different for a child who learns how to regulate their nervous system with their breath, how to modify their movements according to their symptoms, how to reframe their personal narrative toward gratitude and contentment and a connection with their own inner wisdom. Imagine how their disease might be different, or how they might be different with their disease. Imagine who they might become if they know their own unconditional worth despite what they might hear or see around them.
I was raised to be an ally and I was born with a dharma to reduce suffering in the world by transforming how people live with pain. This means taking action in my community to support marginalized students and it means bringing the tools of yoga to kids with systemic arthritis. There is much to be proud of in all we’ve accomplished- how much more acceptance and tolerance and understanding there can be for our kids than for generations before. Let’s celebrate that. And let’s keep working because there is still so much more to be done.