It All Comes Out: Why I Left R.A.R.E.
Updated: Oct 15
In March of 2020, I started what I thought was a supportive rare disease community with two fellow women I'd met through Instagram and other MHE support groups. These two women were Marie and Lauren. We were all tired of the lack of support in rare disease groups, and the negativity. We wanted to create an inclusive space for people with rare diseases to come together.
For a few weeks, we built this idea together. We chatted regularly, discussing the importance of sharing our rare disease stories with the world. I invited my family and friends into the group, believing it was going to be exactly what I thought we were building: an inclusive place where rare disease warriors could find support.
For a little bit, I was excited about what we were building. After several weeks of knowing and trying to work with Marie, I was a complete mess of stress and anxiety. Marie would often fly of the handle about things, and she expected a lot out of the advocates and Lauren and I.
It was beginning to effect my family; as I couldn't seem to draw away from the constant drama and barrage of messages. I ignored a lot of red flags because I knew that Marie and her husband both struggled with mental health issues and had a lot of other situations happening that I knew likely stressed them out. Still, both Marie's and her husband's language was growing alarming violent and controlling in nature. She had expressed anger at a few advocates who had terminated contracts prior, and cited the advocate contracts as owning their content and voices, even after they'd left.
That talk made me extremely uncomfortable. I didn't understand the point of the advocate contracts, nor Marie's overall vision but before I could even tackle it...George Floyd died, and the world's collective heart broke.
I knew it wasn't much, but I wanted to at least toss up a quote from Martin Luther King Jr. to show our support for the black community. I showed my quote to Marie and she forbid me from posting it, saying that R.A.R.E. was a politics free group. I disagreed with that front and expressed as much; how can you say that a disability rights advocacy group needs to remain politics free, when the very thing we advocate for is political in nature?
I at least wanted to make our pages go silent and share posts from POC to help amplify their voices, as it was a time to listen and be supportive. But Marie insisted that this space needed to remain political free for her own mental health stability.
At the same time this was happening, Marie kept saying things that were problematic in nature and her husband kept posting really violent stuff on his personal Facebook page. These things were very hurtful and invalidating to our mutual friend Lauren's experiences as a white woman married to a POC.
When I say I am about a positive growth mindset, I actually mean it. I took the time to try to break down Marie's problematic language and her husband's alarming behaviour to her directly. I spent a lot of time explaining why I found her and her husband's actions harmful, especially as they consider themselves "the faces of R.A.R.E. Advocacy. But I quickly realized that neither Marie or her husband had any interest in changing how they were conducting themselves, so I told them I would not be able to continue on with R.A.R.E.
From there, Marie's husband started messaging me, demanding to know if I no longer wanted to be apart of R.A.R.E.
After I said I obviously couldn't and wouldn't stick around for that, I was tossed from the groups before I had a chance to remove my children's photographs and my written content. This was alarming, because of Marie's language earlier about advocates contracts and owning people's content.
My husband even messaged the page to request the removal, but because Lauren and I had mutually decided to privately reach out to the friends, family, and co-workers that we'd brought into R.A.R.E. about why we were no longer associated with it, I was threatened about running my mouth.
I took a lot of screen grabs, and I have them all. I don't want to drop every last one of them and shame these people, but the constant stress of having them threatening me in the background for speaking up against their really problematic behaviours has heaped on a crap ton of unnecessary stress.
It is not a crime to tell people how someone else or an organization treated you, especially if you invested a lot of time and energy into building something. It's not slander to share with others how they treated Lauren and me. It's not illegal to point out that Marie and Brett happily gobbled up both mine and Lauren's ideas, made us run the show and then took over completely when our "politics didn't align with theirs".
And yet...because I was sharing my experiences, these people tried to bully and threaten me into silence by keeping my childrens' photos hostage.
Eventually after MULTIPLE people called them out for keeping the kids pictures up, Marie and Brett did the right thing and deleted photos and posts of my kids. Regardless; that damage was done. I cannot forgive that kind of treatment of myself and my friends: it's just plain toxic.
As I mentioned earlier, we weren't the first people to walk away from the R.A.R.E. project due to Marie's behaviour. A fellow ex-advocate, Sydney, has a story highlight reel up on her Instagram about her own experience. Sydney was another person who tried to educate Marie on how her harmful behaviour was hurting members of our community.
It's been brought to my attention that she's now indirectly calling me one of her "abusers" and making false claims about her. I am not an abuser for standing up to my bully. I'm also not an abuser for sharing my experience with my connections, and I won't be shamed for doing so.
For years now, I have been a part of the blogging, mental health, and disability communities. I have never caused drama or stirred shit up before, and nor will I now. I will, however, speak the truth about what is happening because I'm tired of the background bullying and peacocking.
Mental health is extremely important to me, so using it as a blanket excuse for every poor choice and toxic action enrages me. It's why I'm speaking up now about this. Marie and Brett have a lot of growing up and maturing to do, and hopefully they're up to the challenge. I hope they both get help for their issues and find peace, and I hope they stop harassing myself and my friends and accept this lesson for what it is:
If you treat people cruelly, they reserve every right to walk away from you. Their mental health matters just as much as yours.
After yet another bullying social media graphic, I decided to finally go public.
The feature in question was this one. The fact that I'm being called an abuser when all I did was TELL this person to their face how they were making me and other advocates feel, and that their behaviour was harmful...then cut them out when they refused to stop being so vile is just laughable. We are not "mean girls" for refusing to allow someone to constantly bully us and then victimize herself, and I'm certainly not afraid to name drop the truth.
Now my message to Marie and Brett; please stop being toxic.