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Disclaimer: While I sometimes offer tips for maintaining wellness while dealing with a chronic illness, and for advocating and being allies, I’m not a licensed medical physician, psychotherapist, psychologist, or legal professional, and I’m not offering medical, psychiatric, or legal advice.
For my full disclaimer policy, go here.
When you live with diverse conditions like chronic illness or disabilities, it means facing a daily uphill battle – one that’s not always visible to the naked eye. Whether it’s the relentless pain of a chronic illness, the hurdles presented by disabilities, the intricate world of neurodivergence, or the often silent but profound struggles of mental health conditions, every day presents its own set of unique challenges. To those of us who travel this complex terrain, having strong allies is not just appreciated; it’s indispensable. The unwavering support and empathy they provide help us navigate these uncharted waters. Nevertheless, despite their best intentions, there are misconceptions that can unintentionally hinder the progress we all seek to make. So, let’s break it down and address these misconceptions together.
4 Common Mistakes Allies Should Avoid
Mistake 1: Thinking They Know What’s Best
Common Misconception: Often, our allies assume they know what’s best for us without consulting us. Decisions and policies get made on our behalf, as if those without our conditions understand our needs better than we do.
Why This Is Wrong: It’s not that we don’t appreciate the input, but assuming you know our lives better than we do can feel patronizing. We are the experts on our own experiences, and we have unique insights into what would truly benefit us.
What We Need You to Do Instead: Listen, Learn, and Stand with Us
The first step to being a supportive ally is to genuinely listen and learn from us. Respect our experiences, needs, and preferences. Empower us to actively participate in shaping policies and support systems that directly affect us. Collaboration is key here.
Why This Makes a Difference: When you listen, learn, and collaborate with us, you gain valuable insights into our unique challenges. You can then tailor your advocacy efforts to be more meaningful and supportive. It also shows that you respect our autonomy and value our input in decision-making processes. By involving us in decision-making, you ensure that policies and support systems truly align with our specific needs and preferences, making a significant impact on our lives.
Practical Example: How about organizing focus group discussions with people who have chronic illnesses, disabilities, neurodivergences, and mental health conditions to understand our specific concerns and needs before making important decisions that affect us? Our voices are crucial in shaping policies that work for us.
Mistake 2: Just Focusing on Physical Access
Common Misconception: Allies often think that physical access, like ramps or accessible bathrooms, is the only solution to our challenges. They believe that once the physical barriers are addressed, our problems are solved.
Why This Is Wrong: While ramps and accessible bathrooms are essential, they’re just part of the puzzle. People with chronic illnesses, disabilities, neurodivergences, and mental health conditions also face emotional, social, and psychological challenges. Focusing solely on physical access doesn’t address the full scope of our needs.
What We Need You to Do Instead: Embrace Inclusivity, Show Empathy, and Offer Holistic Support
Support for us should go beyond physical accommodations. It should include initiatives that foster inclusivity and empathy. Recognize the complexity of our challenges, including the stigma and discrimination we face, as well as the emotional and mental struggles.
Why This Makes a Difference: When you embrace inclusivity and show empathy, you help reduce stigma and create a more supportive environment. You acknowledge that we’re dealing with a lot more than just physical barriers. By addressing the emotional and social aspects of our challenges, you help create an environment where we feel understood and supported, which can significantly ease the mental and emotional burden of our conditions.
Practical Example: Help spread awareness by sharing information that educates the community about different chronic illnesses, disabilities, neurodivergences, and mental health conditions. Share our personal stories, and emphasize the importance of understanding and empathy. This approach creates a more compassionate and inclusive environment where we feel valued, understood, and supported.
Mistake 3: Stereotyping and Tokenism
Common Misconception: Some allies unintentionally perpetuate stereotypes or engage in tokenistic representation, where they overgeneralize our experiences or use our stories as mere tokens of diversity.
Why This Is Wrong: Stereotyping and tokenism reduce us to our conditions, reinforcing harmful biases and overlooking the diversity within the chronic illness, disability, neurodivergences, and mental health conditions communities. This approach fails to recognize our unique experiences and identities, reducing us to a one-dimensional representation.
What We Need You to Do Instead: Promote Intersectionality and Diverse Representation
Advocacy efforts should prioritize understanding the intersectionality within the chronic illness, disability, neurodivergences, and mental health conditions communities. Acknowledge that we come from various backgrounds, have different experiences, and hold diverse identities. Our lives are shaped by multiple factors, not just our health conditions. Value our diverse perspectives and experiences.
Why This Makes a Difference: Embracing intersectionality encourages a more accurate and respectful representation. It leads to policies and initiatives that better address the complex needs of individuals. It highlights the diversity and depth within our community, celebrating our individuality. By promoting diverse representation, you break down harmful stereotypes and ensure that advocacy efforts are inclusive, respectful, and relevant to a broader range of individuals.
Practical Example: When advocating, consider organizing events and campaigns that showcase the stories and experiences of people with chronic illnesses, disabilities, neurodivergences, and mental health conditions from diverse backgrounds. Highlight the many dimensions of our identities. This helps break down stereotypes and promotes a more inclusive understanding of our lives, ensuring that advocacy efforts are relevant and respectful.
Mistake 4: Assuming Uniformity
Common Misconception: Allies sometimes assume that all individuals with chronic illnesses, disabilities, neurodivergences, and mental health conditions require the same support and advocacy strategies.
Why This Is Wrong: We face diverse challenges. A one-size-fits-all approach doesn’t cut it. It neglects the complexity of our conditions and may not provide the necessary support for every individual.
What We Need You to Do Instead: Personalize Advocacy and Tailor Support
Acknowledge the individuality of our experiences, needs, and goals. Tailor support accordingly. Recognize that each person’s journey with chronic illness, disability, neurodivergences, or mental health conditions is unique.
Why This Makes a Difference: Personalized advocacy ensures that individuals receive the specific support and resources that address their circumstances effectively. By tailoring support, you empower individuals to access resources that directly address their unique challenges, increasing the effectiveness of advocacy efforts.
Practical Example: Collaborate with local organizations to create customized support plans for individuals with chronic illnesses, disabilities, neurodivergences, and mental health conditions, considering their unique requirements and objectives. This approach empowers individuals to access the assistance that aligns with their personal needs and challenges, ensuring they receive the most relevant support.
Becoming Champions for Change
As allies and advocates, you stand at a critical crossroads in the journey towards a more inclusive and compassionate world. By addressing the misconceptions and embracing the “things we need you to do instead,” you’re helping to drive positive change. But the work doesn’t end here.
To truly understand and support individuals with chronic illness, disabilities, neurodivergences, and mental health conditions, I invite you to dive deeper. The path to becoming better allies and advocates is an ongoing one, and I’m here to help.
For invaluable insights and practical strategies on how to help you or those you advocate for adapt, support, and empower those facing unique challenges, download my free guide, “5 Keys to Adaptability“, available by filling out the form below this post. This resource is not only beneficial for those directly affected by these conditions but also for allies seeking to understand better what support means in this context.
Let’s continue to champion change, uphold inclusivity, and empower individuals on their unique journeys. Together, we shape a brighter, more equitable future.
Thank you for standing by our side,
