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Continue reading →: Why Advocacy? Why Disability? Why Autism? Why Now?
I have been challenged to see the beauty, the misogony, the advancements, the racism, the caring and abelism all within the western medicine system.
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Continue reading →: Chronic Illness and Disabled Nursing
Ovarian Failure, failure as a woman. Menopause at the age of 29 years old. The time when I could have outworked any man. Suddenly, I was home, feeling ill and odd in my body. No yoga, no desire, just running hot and cold. Now at 38, Long-Covid and disability.…
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Continue reading →: Transforming Nursing Culture: Embracing Disability Justice
Ableism in healthcare poses significant barriers for disabled patients and nurses. It manifests in nursing practices through dismissal of invisible symptoms, skepticism towards mobility aids, and a focus on compliance over collaboration. This blog highlights the urgent need for systemic change in nursing culture to ensure inclusive, accessible, and supportive…
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Continue reading →: Understanding Tylenol and Lecovorin in Autism Research
The blog discusses the links between Autism Spectrum Disorder (ASD) and Tylenol use during pregnancy, presenting recent studies that show minimal risk increase. It critiques claims made by public figures, emphasizes the need for further research on treatments like Lecovorin, and urges a shift from deficit-based views of Autism to…
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Continue reading →: How Social Media Supports Disabled Individuals
The post emphasizes the vital role of social media and online communities for disabled individuals, offering support, validation, and information. It critiques the trivialization of self-diagnosis and advocates for better accessibility in technology. The author shares personal experiences illustrating the internet’s necessity in navigating healthcare and connecting with others who…
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Continue reading →: Living Well: Nurturing Disability Pride Every Day
I think the most important daily habit for me is taking my medications. Without my meds, my adhd would wreak havoc on my daily life, my heart rate would be super high and jumpy, pain would be uncontrolled, estrogen non-existent, and ultimately my functionality would be significantly reduced. Within the…
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Continue reading →: Urgent Care vs. ER: When to Seek Help
As someone with multiple chronic illnesses, where do I go when I am in a flare? Today I had to go to my local Urgent Care facility and I am so relieved I went there instead of the emergency room. I have been experiencing a POTs flare for the past…
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Continue reading →: Pale, Skinny, Frail: A Powerful Poem
The speaker grapples with the perception of their frail appearance, feeling misunderstood and labeled as pale, skinny, and unwell. Despite acknowledging the love behind these comments, they express frustration over being seen only through this diminished lens. Ultimately, they assert their inner strength and beauty beyond physical appearances.
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Continue reading →: Long-Covid and Toxic Positivity: Navigating Emotional Challenges
The author discusses the struggle to balance positivity and emotional authenticity while dealing with Long-Covid. They express frustration with the toxic positivity often encountered in society, which invalidates their feelings. Instead, they advocate for acknowledging grief and allowing space for genuine emotions, while remaining hopeful and proactive about their health.
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Continue reading →: My Grandfather’s Diamonds
Yes, I “use” diamonds every single day. Most likely in a way you would not think of right away. I use them to remember I am loved. My grandfather passed away before I was born. My Mom has always told me how much of a loving father he was and…
Hello,
I’m Casey-Lee
I have been an RN for over 14 years and have lived with chronic illness since 2019. While I have always fiercely advocated for my patients, I struggled to do the same for myself. I had to radically change how I viewed the medical system, adjust my expectations, and unlearn my tendencies toward people-pleasing.
Recognizing the challenges of self-advocacy inspired me to create this platform. The “radical” aspect is that we acknowledge the many systemic and personal factors that impact our community.
Many people experience multiple intersecting identities that create barriers to care. Such as being a person of color and disabled, a woman and disabled, or queer and disabled. Each requires unique approaches to self-advocacy.
Our resource hub will continually evolve to meet the changing needs of our community. I hope this space nourishes, empowers and provides practical tools for navigating healthcare as an advocate for yourself and others.
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