Rare Disability, Powerful Sisterhood | Karen Tamley

What happens when you finally meet someone who understands how your body works? For Alycia Anderson and Karen Tamley, a LinkedIn introduction became the beginning of a powerful disability sisterhood. Both women were born with sacral agenesis, a rare congenital disability affecting the lower spine. They grew up using wheelchairs during a time when disabled children were routinely underestimated, accessibility was rare, and doctors placed devastating limitations on their futures. Then they met and immediately began comparing notes: “Wait, your body does that? Mine does too.” In Episode 151 of Pushing Forward with Alycia, Karen Tamley, President and CEO of Access Living, joins Alycia for an honest conversation about rare disability, peer support, leadership, aging, Disability Pride, and the urgent fight to protect disability rights. Finding Someone Who Understands Karen did not meet another person with sacral agenesis until her twenties. Before social media, finding others with the same disability was incredibly difficult. Meeting Alycia gave both women a rare opportunity to talk openly about their bodies, mobility, health, childhoods, and aging without having to explain every detail first. Karen describes that connection as a security blanket and safety net. Their friendship reflects the importance of peer support within the independent living movement. Disabled people hold knowledge that cannot always be found in medical offices or textbooks, and that lived experience can help others navigate healthcare, access, identity, and everyday life. Growing Up Before Accessibility Alycia and Karen remember life before the Americans with Disabilities Act. They recall inaccessible buses, oversized wheelchairs, buildings with stairs, restaurants without accessible bathrooms, and being carried into spaces. Karen shares that her mother carried her up four stairs every morning to reach a summer job in an inaccessible building. She also remembers putting flip flops on her hands so she could crawl across public restroom floors. Alycia had done the same thing. Their stories reveal how exclusion becomes normalized when disabled people are not protected by enforceable civil rights. Community Living Is a Disability Right Karen explains the importance of the 1999 Olmstead decision, which affirmed that unnecessary institutionalization and segregation can be discrimination under the Americans with Disabilities Act. The decision helped establish that disabled people have the right to receive services and live within their communities. Through Access Living and partner organizations, disabled people are supported as they transition from nursing facilities and institutions into their own homes. Karen warns that Medicaid reductions, weakened enforcement, and renewed conversations about institutionalization threaten decades of progress. Disabled people are asking for the right to live in their own homes, make decisions about their lives, and participate fully in their communities. Advocacy Belongs to Everyone Karen reminds listeners that advocacy is not limited to policy experts. People can make a difference by learning from trusted disability led organizations, sharing accurate information, contacting elected officials, submitting public comments, telling personal stories, amplifying disabled advocates, and connecting with a local Center for Independent Living. Her message is clear: Do not assume your voice will not be heard. Speak up anyway. Leadership Begins in the Deep End Karen credits her parents and mentors with encouraging her to take risks. Her mother often said they were going to throw Karen into the deep end of the pool and let her figure out how to swim. That mindset followed her throughout her career. Mentors including Judy Heumann, Ed Roberts, Wade Blank, and Marca Bristo recognized Karen’s potential and placed her in leadership roles before she always felt ready. Karen later served as Commissioner of the Chicago Mayor’s Office for People with Disabilities, was appointed to the U.S. Access Board, and became President and CEO of Access Living. Her journey demonstrates the power of leaders who believe in someone before that person fully believes in themselves. Disability Pride and Aging For Karen, Disability Pride means community, visibility, self worth, and being okay with who we are. It does not mean loving every part of disability every day. Pride can exist alongside pain, fear, frustration, internalized ableism, and uncertainty. Alycia and Karen also discuss the realities of aging with a rare disability, including concerns about mobility, transfers, travel, health, and future independence. Both women were given frightening medical predictions as children. Decades later, they are still here, leading, traveling, advocating, creating community, and celebrating every year they were told they might never have. Aging with disability can be uncertain. It is also a privilege. You Deserve to Be in the Space Karen’s Pushing Forward moment is a challenge to step outside your comfort zone. Attend the event. Accept the opportunity. Enter the room, even when you do not know anyone. Leadership does not eliminate fear or imposter syndrome. You deserve to be there. You deserve to be in that space. Two Women, One Rare Disability, and a Movement to Protect 🧬 Rare disability connection: Discovering someone else who lives with sacral agenesis 🤝 Disability sisterhood: The emotional and practical value of finding someone who understands ♿ Peer support: Why lived experience is a core part of independent living 🚌 Life before the ADA: Growing up without accessible buses, bathrooms, buildings, and mobility equipment 🚻 Normalized inaccessibility: Crawling, being carried, and adapting to spaces that excluded disabled people ⚖️ Disability civil rights: Protecting the laws and legal decisions that support integration and access 🏠 Community living: The right of disabled people to live outside institutions 💰 Medicaid and support services: How funding decisions affect independence and personal choice 📣 Everyday advocacy: Public comments, storytelling, education, organizing, and contacting representatives 👩‍💼 Disabled women in leadership: Karen’s path from advocacy roles to executive leadership 🔥 Mentorship: Being encouraged to enter roles before feeling completely ready 🎉 Disability Pride: Visibility, community, self worth, and accepting the full reality of disability 🧓 Aging with disability: Facing uncertainty while celebrating the privilege of growing older 💡 Imposter syndrome: Claiming your place even when confidence has not caught up yet From Rare Disability Sisterhood to Disability Rights Action TIMESTAMPS Words That Demand Visibility, Action, and Pride “There’s an inherent value in people with disabilities connecting with individuals with disabilities and sharing those lived experiences.” Karen Tamley “We have seen life before we had any rights.” Karen Tamley “Institutionalization and segregation is a form of discrimination.” Karen Tamley CONNECT WITH KAREN TAMLEY Stay Informed. Get Involved. Protect Disability Rights. Karen Tamley is President and CEO of Access Living, a Chicago based Center for Independent Living led by and for people with disabilities. ♿ ⁠Learn more about Karen Tamley⁠ 🏠 ⁠Visit Access Living⁠ 📣 ⁠Subscribe to the Access Living Advocacy Newsletter⁠ 💗 ⁠Support Access Living’s work⁠ 🤝 ⁠Get involved with Access Living⁠ 📍 ⁠Find a Center for Independent Living near you⁠ Connect with Alycia 🌐 Website: ⁠⁠https://alyciaanderson.com/⁠⁠ 🎙️ Podcast: ⁠⁠https://alyciaanderson.com/podcast⁠⁠ 💼 LinkedIn: ⁠⁠https://www.linkedin.com/in/alyciaanderson/⁠⁠ 📸 Instagram: ⁠⁠https://www.instagram.com/alyciaanderson/⁠⁠ About Pushing Forward with Alycia Pushing Forward with Alycia gives disability a voice through conversations about accessibility, inclusion, ambition, resilience, leadership, advocacy, and creating a more inclusive world for all people. 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