Annie in wonderland

Life Update: Managing Health, Learning, and Self-Advocacy This year, I’m focusing on getting my health back on track, working closely with my care teams to improve my daily routines, sleep, and overall well-being. Managing chronic conditions is complex, and while I’ve been lucky to have people in my personal life who support me—getting me to appointments, cooking meals, and helping me navigate everything—it’s still a long road. One of my biggest struggles is sleep . Chronic pain, neuropathy , and Sjögren’s syndrome make it difficult, and while I can distract myself during the day with content creation, crafting, and study, nighttime is another story. The best way I’ve found to describe neuropathy is: Imagine you’ve sat on an ant nest. They’re crawling all over you, and you’re desperately trying to brush them off. But because neuropathy is a nerve problem, you can’t brush them off. Then, your hands start burning and going numb. Since I have new readers, here’s a quick rundown of my ...

  Dr. Jordan Peterson’s rule, “Tell the truth—or at least don’t lie,” has profound implications in the world of disability. But first, let’s acknowledge that truth is complex. There’s your side, their side, and the objective truth. To navigate this, we need a moral framework—whether it’s Christianity, Judaism, Islam, The Way (as referenced in The Mandalorian ), or another guiding principle. The real question is: How do we determine what is true? Knowing Your Disability: Diagnosis, Masking, and Accountability In the disability space, truth begins with knowing and acknowledging your diagnoses. This means investing time and money into obtaining official diagnoses, understanding their impact, and distinguishing between a medical condition and a disability. Sometimes they overlap, but they can also be entirely separate. One of the greatest challenges in disability is masking . Many people with ADHD or autism learn to “mask” their symptoms, appearing neurotypical while silently exhaustin...

  Over the weekend, a friend of mine posted a rant online, and with their consent, I’m sharing my thoughts about it here. They talked about a friend who had “gone dark” to test if people would notice their absence. If no one reached out, the friend would "dump" those who hadn’t checked in. This behaviour raises many questions about friendship. Yes, sometimes it’s frustrating to feel like you’re the one always initiating contact, but life gets busy. My friend, for example, juggles work, raises children, runs a household with pets, and volunteers in the community. It’s not always easy for people to make time, even if they care deeply. A simple phone call or message—like saying, “Hey, we haven’t seen each other in ages!”—can go a long way. Starting a group chat is another great way to stay connected. However, for people with disabilities, especially those with ASD, ADHD, or depression, initiating contact can be incredibly hard. That’s where compassion comes in. This friend of mi...

   Hey all, this is going to be a controversial post, and it ties into the overview of the podcast this year. There are some dangerous lines that you shouldn’t utter in front of management. In support and care work, I’ve learned from talking with support workers that there is never truly “nothing to do.” So here are some suggestions for support workers in in-home care or SIL homes. I want to address something I’ve heard people say: “I’m not a cleaner,” or “I can’t do that because of an injury.” If that’s the case, it’s worth asking: is it safe for you to continue as a support worker, or should you focus on roles like community access? There are no ifs, buts, or maybes around this—personal care and cleaning are a significant part of the job, even in community access. Many people see support work glorified on social media and only realise later that it involves much more effort, cleaning, and planning than they anticipated. When it feels like there’s “nothing to do,” that’s o...