As a parent of a disabled child, I feel like I’m constantly advocating. I’m constantly looking for ways to educate, shed light, call out areas of opportunity for people like Callie. I’m passionate about it, fired up, and want to change the world. It’s also not lost on me that I also have my own chronic health condition, Type One Diabetes, and literally work as a Patient Advocate at a large medical device company. I’m advocate for a living and then go home to continue to advocate for our little girl.
I advocate all day long.
And sometimes…….that spark dims. And I feel tired. And a little overwhelmed. A little dejected. And a little like I’m relentlessly trying to move the needle that’s just determined not to move.
And I lose a bit of that passion. And I find myself slowing down.
Which hurray, means I’m human. Everyone feels like this–whether you don’t feel as excited about your job, or your relationship, or your fitness journey, your quest to get your college degree, or your goal to hike all of the National Parks, sometimes the momentum and motivation just disappears.
And that’s ok. You’re human remember?
But if you’re looking for ways to reinvigorate and reignite that spark for advocacy, here’s a few things that have worked really well for me.
Remember the little wins.
Little by little, a little becomes a lot. By giving attention to small wins, you are making your conscious mind focus on the positive. It’s no secret that I believe that whatever we put our focus and energy into will flourish–and by doing so, the more abundance we attract, the more positive energy we attract, and the more opportunity we open ourselves up to. Remind yourself to celebrate every little win because every one of them was a big deal. Each one got you one baby step closer on the journey.
Remind yourself how far you’ve come.
One of the most impactful things I do to reignite my passion for advocacy is to look back at where we’ve started. Perspective is a powerful thing. Doing a quick walk down memory lane reminds me of the tough times we’ve faced, the rough waters we’ve navigated, the times I’ve somehow managed to find my way home on the darkest days, and all of the heartbreakingly hard things we’ve triumphed over. It reminds me of all the times we’ve been knocked down but come back courageously from the shadows. It reminds me of our continued history of being unstoppable and how strong, capable, relentless, and tenacious we truly are. Remember that time you championed for changes to the 504 plan? Remember that time you got the insurance to cover the extra liners? Remember that time you got to participate in Disability Day at the elementary school and got to teach a bunch of wide eyed kids about disabilities? Remember when your essay was published in a book? All of those times remind me of something Herculean that we stood up against and successfully overcame.
Take some time off.
Honestly, maybe you are burnt out. Being a parent of a disabled child is HARD. In some cases, you might not have the capacity to take time off from advocating for your child–it could be a situation where you have to stand your ground, show up and do the work. But in the instances where you do have the ability to pause for a minute….maybe it would be good to take a beat. Getting re-energized and reinvigorated will take additional energy on top of what you need daily, so take a break to rest, realign, and rejuvenate where you can before diving headfirst back into advocacy.
Pick Your Battles
If you are feeling like the passion is gone, picking where you direct your energy is key. When I find myself feeling like this, I tend to try to be strategic about which areas of my life are the most important to focus on. Do I need to reply to every ignorant and ableist comment on the internet? No. Do I need to educate random strangers at the airport about why my daughter can’t go through the normal TSA screen process? No. Do I need to stop to answer every “What happened to your leg?” question that we get? No. Do I need to engage in warfare of the comments section on social media? Absolutely not.
Do I need to call the insurance company to make sure that her prosthetic gel liners and socks are covered? Yes. Do I need to write an essay about diabetes management for Yahoo? Yes.
Picking my battles ensures that I’m not engaging in things that will add to my burn out and keeps me focused on things that will truly move the needle. When I can see little wins happening again–like the insurance approves the liners and socks, that momentum inspires me to keep going. Suddenly, that spark is ignited again.
Realign to the goal.
For me, this means reminding myself of the “why.” Why am I advocating? Why is this important? Why do I need to do this? And the bottom line will always be the same, because she’s my daughter. Because I love her. Because she’s worth it and deserves to have access to tools, resources, equipment, and included wholly into society.
I hope these suggestions help–and I hope they are just the spark that you need to feel re-energize and reignited in your advocacy journey!
Love and light–
Jaime
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