The Access Living CEO joins Alycia Anderson for a candid conversation about sacral agenesis, growing up before the ADA, independent living, leadership, advocacy, and Disability Pride.

What happens when you spend your entire life believing almost no one understands how your body works, and then suddenly find someone who does?

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. Both grew up using wheelchairs. Both entered the world during a time when disabled children were routinely underestimated, inaccessible environments were accepted, 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 a conversation that is personal, joyful, honest, and urgently connected to today’s disability rights movement.

Finding Someone Who Truly Understands

Karen did not meet another person with sacral agenesis until she was in her twenties.

Growing up before social media made it difficult to find people who shared her diagnosis or lived experience. Meeting Alycia created a rare opportunity to discuss their bodies, mobility, health, childhoods, and aging without needing to explain every detail first.

Karen describes this connection as a security blanket and safety net.

Their friendship demonstrates why peer support has always been central to the independent living movement. Disabled people possess knowledge that cannot always be found in medical offices, textbooks, or professional training. They help one another navigate healthcare, mobility, identity, access, and everyday life.

Growing Up Before Accessibility Was Expected

Alycia and Karen belong to a generation that remembers life before the Americans with Disabilities Act.

They remember inaccessible buses, oversized institutional wheelchairs, buildings with stairs, restaurants without accessible bathrooms, and being physically carried into spaces.

Karen recalls taking a summer job in an inaccessible building. Her mother carried her up four stairs every morning because it was the only job opportunity available to her.

She also remembers putting flip flops on her hands so she could crawl across public restroom floors and reach an inaccessible toilet.

Alycia immediately recognized the experience because she had done the same thing.

These memories reveal how exclusion becomes normalized when disabled people have no enforceable right to access. What once seemed like an unavoidable part of disability is now something both women recognize as unacceptable.

Why Community Living Is a Disability Right

Karen brings decades of experience in disability advocacy and public leadership to the conversation.

She explains the importance of the 1999 Olmstead decision, which affirmed that the unnecessary institutionalization and segregation of disabled people can constitute discrimination under the Americans with Disabilities Act.

For the disability community, the decision established a critical principle: disabled people have the right to receive services and live in the most integrated setting appropriate to their needs.

Through Access Living and a statewide network of organizations, people with disabilities are supported as they transition from nursing facilities and institutions into homes within their communities.

Karen warns that policy decisions, Medicaid reductions, weakened enforcement, and renewed conversations about institutionalization threaten decades of progress.

Disabled people are not asking for extraordinary treatment.

They are asking for the right to live in their own homes, make choices about their lives, and participate in their communities.

How to Become Part of the Advocacy

Karen reminds listeners that advocacy does not belong only to policy experts or nonprofit leaders.

Individuals can make a difference by:

• Learning from trusted disability led organizations
• Sharing accurate information with their communities
• Contacting local, state, and federal representatives
• Submitting public comments on proposed rules
• Sharing personal stories about how policies affect real lives
• Amplifying disabled advocates and organizations
• Connecting with a local
• Center for Independent Living
• Encouraging nondisabled allies to join the fight

Karen points to previous public comment campaigns that generated tens of thousands of responses and influenced federal decision making.

Her message is clear:

Do not assume your voice will not be heard. Speak up anyway.

Leadership Begins in the Deep End

Karen credits much of her leadership journey to parents who allowed her to take risks.

Her mother frequently said they were going to throw Karen into the deep end of the pool and let her figure out how to swim.

That philosophy followed Karen into her professional life.

Mentors including disability rights leaders Judy Heumann, Ed Roberts, Wade Blank, Marca Bristo, and others recognized Karen’s potential, gave her opportunities, and placed her in leadership roles before she always felt ready.

Karen eventually served as Commissioner of the Chicago Mayor’s Office for People with Disabilities, was appointed by President Barack Obama to the U.S. Access Board, and became President and CEO of Access Living.

Her career demonstrates the power of leaders who see something in another person before that person fully sees it in themselves.

Disability Pride Is Honest, Not Perfect

For Karen, Disability Pride means being okay with who we are.

It means community, visibility, self worth, progress, and the freedom to exist openly as disabled people.

But she also acknowledges that pride does not require someone to love every part of disability every day.

Disabled people may still experience pain, fear, frustration, internalized ableism, or uncertainty. Pride allows all of those realities to exist while rejecting the idea that disability makes someone less valuable.

Aging with Disability

Aging can feel especially uncertain for people living with rare disabilities.

Alycia and Karen discuss fears about future mobility, transferring, travel, shoulder strength, healthcare, manual wheelchair use, and how their bodies may change.

Because limited information exists about aging with sacral agenesis, their friendship provides practical and emotional support.

Both women were given frightening medical predictions as children. Doctors told their families that they might not live long or experience meaningful lives.

Decades later, they are still here.

They are leading organizations, building movements, traveling, speaking, advocating, creating community, and celebrating every year they were told they might never receive.

Aging, they agree, is not something to take for granted.

It is 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.

Walk, roll, or enter the room even when you do not know anyone.

Leadership does not eliminate fear or imposter syndrome. Even experienced executives sometimes question whether they belong.

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.

We have seen life before we had any rights.

~ Karen Tamley

Institutionalization and segregation is a form of discrimination.

~ Karen Tamley

Two Women, One Rare Disability, and a Movement to Protect

From Rare Disability Sisterhood to Disability Rights Action

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.

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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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