Wheel Talk Podcast: Disabled Voices and Rare Disease

Author: Kelly Berger and Avery Roberts
Published: 27 Jul 2026
Publication Type: Submitted Article

Table of Contents:
Synopsis - Definition - Overview - FAQs - Insights, Updates - Related Content

Synopsis

This article introduces Wheel Talk with Kelly and Avery, a podcast created by two friends who both live with collagen 6-related dystrophy, an ultra-rare form of congenital muscular dystrophy, and use their chairs as full-time power wheelchair users, offering listeners a candid look at disability through the perspectives of people who experience it daily, which makes it especially useful for people with disabilities, seniors, and anyone seeking authentic representation and connection around rare disease, accessibility, and community, while the hosts also describe how their friendship grew from a shared diagnosis into a partnership focused on advocacy at the state and federal levels.*

At a Glance

1 - Kelly and Avery are both full-time power wheelchair users.
2 - Their friendship began through a shared rare disease diagnosis.
3 - Episodes cover adaptive equipment, healthcare, mental health, and relationships.
4 - The hosts share their stories with policymakers to push for a more accessible and inclusive future.

Topic Definition

Congenital Muscular Dystrophy (CMD): Congenital muscular dystrophy refers to a group of rare genetic neuromuscular disorders present from birth or early infancy that affect muscle strength and function, often leading to progressive muscle weakness and, in many cases, reliance on mobility aids such as power wheelchairs. Collagen 6-related dystrophy, also known as COL6-RD, is an ultra-rare subtype caused by problems in the collagen VI protein that supports muscle tissue, and it can influence a person's mobility, respiratory function, and daily independence throughout life.

Overview

Wheel Talk with Kelly & Avery - Amplifying Disabled Voices Through Honest Conversations and Lived Experience

Disability representation is growing, but authentic stories from people living with disabilities themselves remain essential. Wheel Talk with Kelly & Avery is a new podcast created by two friends living with congenital muscular dystrophy (CMD), a rare genetic neuromuscular condition, with the goal of creating meaningful conversations that celebrate disability identity, challenge misconceptions, and amplify voices from within the disability community.

Wheel Talk with Kelly and Avery

Hosted by Kelly Berger and Avery Roberts, Wheel Talk provides a space where disability is not viewed through a lens of limitation, but through experiences of resilience, humor, advocacy, friendship, and everyday life.

Both Kelly and Avery live with collagen 6-related dystrophy (COL6-RD), an ultra-rare form of CMD that affects muscle strength and function. As full-time power wheelchair users, they rely on their chairs as essential tools for mobility, independence, and participation in the world around them.

Avery Roberts and Kelly Berger , using powered wheelchairs, travel side by side along a wide brick waterfront promenade, smiling as they appear to enjoy a conversation. — Avery Roberts (Left) and Kelly Berger (Right), using powered wheelchairs, travel side by side along a wide brick waterfront promenade, smiling as they appear to enjoy a conversation. The woman on the left has long brown hair and wears a green jacket, black leggings, and light-colored ankle boots, while the woman on the right wears a bright pink top with embellished sleeves, a long black-and-white striped skirt, and a black wide-brimmed hat. A black metal railing lines the left side of the path beside leafy trees and shrubs, with a softly blurred city skyline rising in the background. Benches, lampposts, and scattered greenery along the walkway create a relaxed urban park setting that conveys friendship and an enjoyable day outdoors.

Their experiences have shown them firsthand how often people living with disabilities are misunderstood or overlooked. Through Wheel Talk, they hope to change the conversation by creating a platform where disability is discussed openly, honestly, and by the people who live it every day.

"Disability representation matters because people cannot understand what they have never seen," says Roberts. "When people living with disabilities are visible in everyday spaces and sharing their stories, it challenges outdated ideas about what disability looks like and what people living with disabilities can achieve."

Avery Roberts sits in a powered wheelchair on a paved path surrounded by lush green trees and foliage, smiling warmly toward the camera. She is wearing a navy blue short-sleeved top and light-colored pants, with her arms resting comfortably across her raised knees. The wheelchair’s armrest, joystick control, and backrest are visible, while the softly blurred woodland background and dappled sunlight create a calm, peaceful outdoor setting that draws attention to her friendly expression.

The podcast explores a wide range of topics that impact the disability community, including accessibility, relationships, adaptive equipment, healthcare experiences, advocacy, mental health, and navigating life with a rare disease. By highlighting both challenges and achievements, Wheel Talk aims to provide listeners with a realistic and empowering look at disability.

For many people living with rare diseases, finding community can be one of the biggest challenges. Rare conditions often mean fewer available resources, fewer opportunities to meet others with similar experiences, and a greater sense of isolation.

Kelly and Avery understand that feeling firsthand. Their friendship began through their shared diagnosis but quickly grew into a collaborative partnership centered around advocacy and community connection.

"Having people who understand the complexities of living with a rare disease is incredibly powerful," says Berger. "We want others to know they are not alone and that their experiences deserve to be heard."

Kelly Berger sits in a black power wheelchair on a wide, paved brick walkway outdoors. She wears a black wide-brimmed hat, a pink short-sleeved top with beaded detailing on the sleeves, and a long black and white striped skirt, along with a wristwatch and rings. Her hands rest gently in her lap, and one hand is near the wheelchair's joystick control. A small bag hangs on the back of her chair. Behind her is a black metal railing with green shrubbery, and in the hazy distance a city skyline of tall buildings rises against a pale gray sky, suggesting she is at a scenic overlook or waterfront park across from a major city.

Their advocacy extends beyond the rare disease space. They actively participate in disability and rare disease legislative advocacy at both the state and federal levels, sharing their stories with policymakers and working toward a more accessible and inclusive future.

Disability is not a single story. It is a community made up of millions of individuals with different experiences, passions, goals, and perspectives. Through their podcast, Kelly and Avery hope to show that people living with disabilities are not defined by their diagnoses—they are friends, professionals, travelers, creators, advocates, and so much more.

"Everyone deserves to see themselves represented," says Berger. "We hope Wheel Talk reminds people that disability does not mean a smaller life. It means finding your own path, adapting when needed, and continuing to pursue the things that matter most."

Wheel Talk with Kelly & Avery invites listeners to join the conversation, learn from lived experiences, and celebrate the power of disability identity.

About Wheel Talk with Kelly & Avery

Wheel Talk with Kelly & Avery Podcast is hosted by Kelly Berger and Avery Roberts, who both live with an ultra-rare form of congenital muscular dystrophy (CMD) called Collagen 6 (COL6). The podcast features bold conversations about the thriving disability community, amplifies disabled voices, breaks down barriers, and celebrates disability identity.

Kelly and Avery are advocates, storytellers, and rare disease champions who use their lived experiences to inspire change, promote accessibility, and encourage authentic representation for future generations.

Visit Wheel Talk with Kelly & Avery

Frequently Asked Questions

NOTE: Researched FAQs by Disabled World (DW)

Where can I listen to Wheel Talk with Kelly and Avery?

The podcast is connected to the Ladies Living Rare project, and details about episodes are shared at ladieslivingrare.com/wheel-talk-podcast, where listeners can learn how to follow along.

Is congenital muscular dystrophy the same as muscular dystrophy?

Congenital muscular dystrophy is one category within the broader family of muscular dystrophies, distinguished by its onset at birth or in early infancy rather than in later childhood or adulthood.

How rare is collagen 6-related dystrophy?

It is considered ultra-rare, meaning it affects a very small number of people worldwide, which is part of why community and shared experience can be so hard to find.

Is there a cure for collagen 6-related dystrophy?

There is currently no cure, and care generally focuses on managing symptoms, supporting mobility and breathing, and maintaining quality of life through therapy and adaptive equipment.

What is legislative advocacy in the disability community?

It is the practice of sharing personal stories and priorities with lawmakers at the state and federal levels to influence policies on accessibility, healthcare, and rare disease support.

Why does disability representation in media matter?

Visible, authentic stories help challenge outdated assumptions, reduce isolation, and give both disabled and non-disabled audiences a more accurate understanding of everyday life with a disability.

Can seniors and caregivers benefit from listening?

Yes, because the conversations about adaptive equipment, healthcare experiences, and daily independence offer practical perspective that is relevant to seniors, caregivers, and families navigating similar situations.

Insights, Analysis, and Developments

Editorial Note: What sets Wheel Talk apart is its refusal to treat disability as a single narrative, and by pairing plain honesty with humor and genuine friendship, Kelly Berger and Avery Roberts remind listeners that a rare diagnosis does not shrink a person's life so much as reshape the path they take through it.*

* Editorial additions by Ian C. Langtree.

Wheel Talk Podcast: Disabled Voices and Rare Disease

Synopsis

At a Glance

Topic Definition

Overview