#SaveSpoonieChat From Being Stolen
This petition made change with 237 supporters!
My life changed when I met Dawn Gibson in 2012. She has been a source of support, inspiration, and comfort for me - and not just me, but hundreds if not thousands of people.
In 2013, Dawn had the idea to create a weekly Twitter chat. The goal was two-fold:
- Raise awareness of how much of an impact our health issues - especially chronic illnesses and invisible disabilities - have on our lives.
- Encourage people within our community to practice better self-care.
After careful planning, consulting, and research, Dawn brought #SpoonieChat into the world. Named after the Spoon Theory by Christine Miserandino, Dawn wanted to create a space to talk about things affecting a 'spoonie.' According to Symplur, over 100,000 tweets have been created using that hashtag since November 2013. Each chat has a different theme and has covered diverse topics from creating an advanced care plan and handling difficult health care providers to intimate relationships and being aware of how much Tylenol is in our medication.
Over the last five years, Dawn has worked tirelessly to provide support to friends and anyone else who has needed it. She's been invited to work with pharma, major patient organizations, nonprofits, and many others because of what she's accomplished - one of the very first social media health chats that's not limited by a specific illness.
Dawn kept this chat and her work going through the loss of her mother, caring for her uncle with dementia, dealing with racism, and her own major health issues. All that matters to her is working to make our community better - whether that's changing misconceptions people have about us or helping on a one-on-one basis.
She's a one-woman show that puts money, time, and energy into emotional labor for us all - something that black women constantly are asked to do without compensation. Dawn has put far more into this chat than she will ever be able to receive from a monetary and notoriety standpoint - showing that neither are what she's looking for.
Wait, why the petition?
Unfortunately, over this time period, organizations and individuals have tried to jump on the bandwagons. The latest to do so is a 'nonprofit' in the UK called Spoonie Chat. Created in the United Kingdom, the founder, Jade, claims they'd never heard of #SpoonieChat until this week. As #SpoonieChat is one of the most well-known Twitter chats in the health world, that seems dubious. When people within the community reached out with concerns on May 30th, this organization began blocking anyone and everyone who spoke up. It's odd, especially as Dawn herself reached out earlier in the week and they stated they'd be in touch after a chat with their team. As of 11 PM Eastern on the 30th, they put their Twitter profile on private to try to avoid the criticisms they rightly deserve.
Upon further investigation, this organization is not a nonprofit registered within the United States or their home base of the UK. Furthermore, while asking for donations, this organization does not disclose what charities funds they receive go to or are used for - something that is required for nonprofit organizations. Additionally, Jade and her three volunteers are young white people who are co-opting the work done by a black woman.
Jade et al. claim they're too 'well established' to change their name and that doing so would result in monetary losses. The flipside of this, as a business and hashtag creator myself, is to do due diligence on the front-end to google anything and everything you'd want to use as a name. I can vividly remember Dawn and me working to ensure that #SpoonieChat was something she could use. It's an experience that I've used in the creation of my own projects.
The group also claims that the handles and domain being free gives them free reign to use them. In addition to being false, this also builds upon the poverty that many of us with illnesses face. Dawn has not had the money to buy the domain or have a website put together.
I've offered to raise money to purchase the domain from Jade et al., but have not heard back.
What do we want?
After this hellish week and despite literally getting sick over this situation, she holds no hate in her heart. All Dawn wants is change - for this organization to change their name and apologize.
Up until now, Jade Taylor - the org creator - has refused to listen to our concerns and righteous anger. It's our hope that this petition will help change their mind as they see how much Dawn's work means to the community - and how much they're alienating the community they claim to serve.
Quotes of appreciation for Dawn
To share the impact she's had on people, I wanted to share a few quotes from fellow patients. Others will be shared in updates or simply with Dawn directly.
Dawn has always been a sweet and kind friend to me over the years. When I post that I’m struggling with my health she always comments to check on me. Even though I haven’t been able to be a part of spoonie chat she’s still there if I need her.
I’ve only just gotten to know Dawn online the last few months, but it’s clear how much she cares about this community; the way she facilitates and organizes the spoonie chat hashtag is part of that. She uplifts, supports, and connects existing voices to each other without centering herself (though she’s plenty worthy of centering!) It’s really quite remarkable all she does.
You have pioneered so much in the chronic community and it’s important that you know how much you change, encourage, and provide for others simply by taking your next breath. You were one of the very first people I found via Twitter and I found you via #SpoonieChat after first being introduced to the spoon theory just MONTHS after diagnosis. I have learned so much from you since. You have celebrated my every victory and held me (even from afar) through every tear. This community and I are forever indebted to you, Dawn. You are one of a kind and YOUR chat is one of a kind. We are here for you and fighting for you. Thankful for all I have learned from (and will continue to learn from) you as a leader in this community.
Dawn, my friend, you are amazing. You genuinely care and I cherish all of our talks about health and caregiving and multiracial families. You truly give of yourself which is such a rare and amazing gift.
Dawn, thank you for all of your hard work to educate and lift up the voices of chronic illness community members around the world.
Today: Kirsten is counting on you
Kirsten Schultz needs your help with “Jade Taylor: Stop Using An Already-Established Name for Your Org #SaveSpoonieChat”. Join Kirsten and 236 supporters today.