In this inspiring episode of The Independent Life podcast, host Tony sits down with Dug Jones, the President of the Board of Directors at the Center for Independent Living of North Central Florida (CILNCF). Dug shares his remarkable journey of resilience and purpose, starting with a life-changing spinal cord injury during high school football. This pivotal moment set the stage for an extraordinary life, including earning law degrees, playing wheelchair basketball at a national and international level, and leading initiatives in education and workforce development.
Dug reflects on his experiences both before and after the Americans with Disabilities Act (ADA), offering unique insights into the evolution of accessibility and inclusion. He also delves into the transformative power of adaptive athletics, how being a parent with a disability has shaped his life, and the professional milestones that have defined his career.
Throughout this conversation, Dug shares valuable wisdom on what drives him, the values that guide his work, and the impact he's had on the disability community. His story is a testament to the power of perseverance, the importance of community, and the strength of the human spirit.
Tune in to hear Dug’s perspective on disability, leadership, and the lessons he’s learned from both his personal and professional journey. You won’t want to miss this heartfelt and enlightening conversation.
Episode Resources:
In this riveting continuation of The Independent Life, Tony and Dr. Steven Noll dive straight into the profound intersections of the disability rights movement with other civil rights struggles of the 1970s. They explore how people with disabilities fought for equality, accessibility, and independence, drawing inspiration from movements led by African Americans, women, and Native Americans while facing unique challenges of their own.
Dr. Noll shares the story of the iconic Capitol Crawl, a moment that galvanized the passage of the Americans with Disabilities Act (ADA) in 1990. With wheelchair users dramatically crawling up the U.S. Capitol steps, disability activists overcame public resistance and business pushback to demand the rights that many take for granted today. The discussion also unpacks the backlash faced by the movement, including paternalistic attitudes and the persistent belief that people with disabilities should be “grateful” for incremental progress.
Tony and Dr. Noll connect the historical fight for the ADA to ongoing threats against disability rights. From attempts to roll back accessibility laws to cuts in vital services, they emphasize the continued need for vigilance and advocacy. Dr. Noll urges listeners to find hope in small victories and to take action at the local level, where individual efforts can spark significant change.
This conversation provides an insightful and motivating call to action for everyone—whether you’re part of the disability community or an ally. Join Tony and Dr. Noll as they reflect on the lessons of history, the progress made, and the work still to be done to ensure a future where all people can live independent, empowered lives. This is more than a history lesson—it’s a call to action for everyone to be a part of the change.
In this compelling episode of The Independent Life, Tony sits down with Dr. Steven Noll, Ph.D, professor at the University of Florida's Department of History and advocate whose career spans decades of groundbreaking work in disability rights and education. Tony begins by recounting their first meeting at Gainesville's Sidney Lanier Center, where Dr. Noll coached basketball and championed fitness for students with disabilities. Together, they reflect on the transformative collaboration that promoted inclusion and empowerment through physical activity.
Dr. Noll shares how his early experiences growing with a family member who had Down syndrome shaped his passion for special education. This led him to a 15-year career teaching at a special education school in Florida, where he also became a pioneer in using adaptive technology to empower students with profound disabilities. From setting up computer labs to coaching basketball, Dr. Noll inspired countless students to achieve greater independence.
The conversation dives into the transformative era of the 1970s, when disability rights leaders gathered at a groundbreaking camp in upstate New York, as chronicled in the documentary Crip Camp. Dr. Noll is currently writing a book on this pivotal time and reflects on how these events ignited the disability rights movement, leading to milestones like the historic 504 protest.
Dr. Noll discusses his transition to academia, where he now teaches the history of disability, helping students understand the evolution of disability rights and policies. He emphasizes the importance of advocacy starting with individuals but gaining power through allies and collective action.
This episode is part one of a two-part conversation with Dr. Noll. Tony invites listeners to reflect on the lessons of the past to inspire the ongoing journey toward equity and inclusion. Don't miss this engaging exploration of history, advocacy, and innovation in the world of disability rights.
Episode Resources:
In this special holiday episode of Disability Dojo, Executive Director Tony reflects on the journey of the Independent Life podcast, which began four years ago during the challenges of the COVID-19 pandemic. As we step into this season of gratitude, Tony shares heartfelt insights about the incredible lessons, experiences, and perspectives gained from hosting the show and engaging with its remarkable guests.
This episode is a celebration of the people and organizations who make the mission of the Center for Independent Living possible. Tony takes time to honor the staff of both the Gainesville and Ocala offices, our community partners, disability advocates, contractors, and everyone who has played a role in empowering independence and advocating for the disability community.
Tony’s reflections remind us of the incredible resilience, self-awareness, adaptability, and empathy demonstrated by individuals with disabilities and those who serve them. He highlights how these attributes—rooted in courage, persistence, humility, and gratitude—serve as powerful examples for navigating challenging times.
As we continue to seek ways to grow and serve better, this episode offers a message of hope, inspiration, and a call to embrace a mindset of gratitude in our daily lives. Whether you’re tuning in during Thanksgiving or any other time, may this episode fill your heart with appreciation for the shared journey of independence and the connections that bring us together.
Wherever you are, whenever you listen, onward and upward.
In this heartfelt episode of The Independent Life, Tony welcomes his longtime friend, Mark Stewart—or as Tony and close friends call him, "Stew." Stew was recently diagnosed with ALS, a progressive and terminal neurological disorder. With courage and clarity, Stew shares his journey, reflecting on what it's like to process this life-altering diagnosis, and the wisdom he's gained in learning how to live meaningfully with the time he has left.
Thirty years of friendship have shaped Tony and Stew’s bond, and a recent canoe trip inspired Tony to invite Stew to share his journey on the podcast. They delve into Stew’s experience of his diagnosis, his reflections on living with purpose, and the lessons he's embraced about time, relationships, and resilience. Despite the progression of ALS, which affects his ability to speak and move, Stew’s perspective shines through powerfully as he shares how he navigates his roles as a husband, father, and friend.
As a father to a daughter with Autism, Stew shares his insights on supporting her unique needs. Despite the prognosis, Stew’s perspective remains rooted in positivity. He talks about the necessity of focusing on constructive thoughts and showing up for the people who matter most, advocating for a life focused on rich, meaningful relationships.
Stew’s wisdom is a powerful reminder: life is an ongoing cycle of learning, letting go, and building strong connections. He encourages listeners to find "their people," detach from social perceptions, and seek joy in each day, even as he rides the waves of his own journey. This episode is a moving testament to resilience, love, and the legacy of kindness and compassion we each have the chance to leave behind.
In this inspiring episode, David Sussman, board president of the Telluride Adaptive Ski Program, shares his remarkable journey through disability and adaptive sports. David reflects on his path to living life with radical acceptance and independence, highlighting how focusing on what he can control has allowed him to thrive. He discusses the pivotal people and moments that have shaped his story, and how adaptive sports pushed him beyond his comfort zone, facilitating personal growth and transformation. David’s enthusiasm for life and his dedication to sharing that with others will leave you motivated to embrace new challenges and live fully.
David Sussman’s journey began in 1977 when, at twelve years old, he contracted Transverse Myelitis, a rare virus that left him paralyzed from the waist down. With the support of his parents, he focused on his future, adapting to life as a paraplegic in Irvine, California. David earned a bachelor’s degree in marketing from New Hampshire College and went on to have a successful career as a marketing executive.
In 1996, David discovered adaptive skiing during a trip to Telluride, Colorado, which reignited his sense of purpose. By 2009, he left the corporate world for a second career in hospitality and began teaching adaptive skiing with STRIDE Adaptive Sports in Albany, New York, allowing him to give back to others.
In 2015, David returned to Telluride to celebrate his 50th birthday and eventually made it his permanent home. Though forced into retirement in 2020 due to health concerns, David now dedicates himself full-time to the Telluride Adaptive Sports Program, where he serves as Board President, ski instructor, and Special Olympics coach.
Episode Resources:
David Sussman Contact:
Kelsey Bell, Executive Director of Southwest Independence Center in Durango, Colorado, joins us on this episode to share her powerful journey of growing up with multiple disabilities and how she embraced her disability as part of her identity. She reflects on her experiences from elementary school through college, offering practical strategies for navigating academic success at each stage.
She also delves into her early role as a Youth Transition Specialist at the center and how it shaped her leadership style. Now at the helm of the organization, Kelsey talks about the importance of engaging the post-ADA generation in the disability movement and independent living, exploring what that engagement looks like and how to foster it.
Kelsey highlights the critical role of integrating the independent living philosophy into both the services and the culture of independent living centers. She explains how this approach is essential to creating healthy, collaborative, and efficient environments for staff and the people they serve.
Episode Resources:
Southwest Center For Independence
Contact: (970) 259-1672
Tony is joined by Dr. Carol Lewis, a community health expert who recently conducted a transformative workshop for the CIL staff. The session emphasized the importance of mental health and wellbeing, particularly for those who dedicate their lives to serving others. Dr. Lewis shares practical strategies for promoting mindfulness, healthy sleep, nutrition, physical activity, and social connections—practices that are accessible to everyone, anywhere, anytime. The conversation explores the mental health spectrum, offering insights into managing situational anxiety, depression, and stress. Dr. Lewis provides clinical explanations and actionable tools to help us all enhance our mental health and support the wellbeing of others in our communities. This episode is a must-listen for anyone looking to deepen their understanding of mental health and discover practical ways to nurture it daily.
Dr. Carol Lewis is a clinical psychologist with 30 years of experience, specializing in the treatment of chronically suicidal and self-injurious individuals through skills-based and mindfulness approaches. She previously worked at UF Health Psychiatric Hospital and now serves in the UF Department of Psychiatry. With a Masters of Public Health and board certification in public health, Dr. Lewis focuses on evidence-based behavioral health treatments for underserved populations. Her research includes developing public health interventions for non-professionals, and she is a founding member of Peace4Gainesville, a trauma-responsive community initiative.
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Dr. Jessica Kramer is an Associate Professor in the Department of Occupational Therapy at the University of Florida's College of Public Health and Health Professions. Her research focuses on collaborating with youth with intellectual and developmental disabilities (I/DD) to create and evaluate rehabilitation products, developing community-based interventions to help these youth and their families address environmental barriers, and designing high-quality patient-reported outcome measures (PROMs). Dr. Kramer employs a variety of methodologies, including quantitative, qualitative, and participatory approaches, to address complex research questions and meet the needs of various stakeholders. She has received grants from organizations such as PCORI, NIH, NIDILRR, and AOTF, and collaborates with multiple universities and advocacy groups. Her practical experience includes helping children and youth with severe disabilities participate and learn in public schools.
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Mark D. Bennett is the principal of Uniting by Design LLC, a consulting firm dedicated to helping leaders build organizations that achieve outstanding results, uphold ethical standards, and adapt to change. After leaving the practice of law, Mark pursued graduate studies in counseling psychology and family therapy. He then became a full-time mediator, handling disputes involving staff, leaders, and boards across businesses, nonprofits, government agencies, and international organizations.
Twenty-five years ago, Mark transitioned from resolving organizational issues to fostering organizational health. He now serves as a workshop presenter on leadership, teamwork, conflict resolution, values-based decision making, and creative collaboration. Additionally, he is a leadership coach, facilitating collaboration, strategic planning, and critical decision making.
Mark has authored three books:
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In this enlightening episode of The Independent Life, Tony welcomes Jonathan Spoliansky, the insightful author of Happiness Is Key. Jonathan's breakthrough book offers a simple yet profound guide on living happily every day, emphasizing that happiness is not just a state of mind but a reflection of our actions and behavior towards others.
Together, they explore the five essential keys outlined in the book, which can unlock our happiness within and create a life filled with peace, trust, gratitude, honesty, and love. Through engaging discussion, Jonathan shares his journey and realizations, drawing from his extensive study of various philosophies and religious traditions, as well as his travels around the world. He highlights how embodying positive qualities like honesty, fairness, empathy, and generosity can create a ripple effect of positivity, benefiting those around us.
This episode is a heartfelt reminder that cultivating happiness is a daily practice that requires effort and attention. Jonathan's practical advice and inspirational insights make it clear that by incorporating these keys into our daily lives, we can make happiness a more consistent and enduring part of our experience.
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Tony sits down with Kimberly Richey, the Senior Chancellor for the Department of Education for the state of Florida. As the overseer of all public schools from K-12 to colleges, workforce development, and various statewide programs, Chancellor Richey has a profound impact on Florida's educational landscape.
Kimberly shares how her mother, a dedicated teacher, and her grandfather were instrumental in shaping her career path, leading her from law school to significant roles in state agencies, including the Office for Civil Rights. Her journey culminated in her current position, where she champions educational excellence and equity.
Tony and Kimberly delve into the importance of advocacy, inspired by her mother's role in her success. She provides valuable insights on empowering parents to become effective advocates for their children's education by understanding systems, acquiring knowledge, and mastering communication.
The conversation also explores the essence of education, the values and virtues that drive Kimberly, and the qualities of effective leadership. Kimberly discusses the keys to successful collaboration and shares her vision for the future of education.
Join us for an inspiring discussion with Chancellor Richey, a dedicated advocate who has worked tirelessly to give a voice to the voiceless and has helped shape impactful legislation to support students and families across Florida.
Join us on this episode as we delve into the impactful world of AgrAbility, where agriculture meets accessibility. Two years ago, Florida welcomed its inaugural AgrAbility program, a collaborative effort spearheaded by The Center for Independent Living of North Central Florida and The University of Florida, supported by a USDA grant. On this episode, we're joined by Chad Reznicek, a Behavioral Health State Specialist with the Colorado AgrAbility Project, as we explore the challenges, triumphs, and vital support systems needed by farmers with disabilities.
Chad shares his personal journey, shaped by his upbringing in a farming family and his subsequent work as a therapist for high-risk youth. This unique blend of experiences forms the foundation for a deep discussion on the multifaceted needs of farmers, the importance of familial and generational connections, and the profound impact of aligning one's values with their work in agriculture.
We take a holistic view, understanding that intervention must occur at multiple levels to create lasting change. Chad emphasizes the significance of addressing farmers' health behaviors, resources, and support networks, highlighting the critical role that programs like AgrAbility play in ensuring farmers can continue their livelihoods independently and with dignity.
In this episode of The Independent Life Podcast, we delve into the world of assistive technologies and their profound impact on enabling independence for individuals with disabilities. Our guests, Eric Reed, Executive Director of FAAST (Florida Alliance For Assistive Services and Technologies), and Kailey Medlock, FAAST's Training & Community Development Director, join us to share their insights and experiences.
We explore the diverse range of assistive technologies available, catering to individuals of all ages and disabilities. Discover how FAAST has evolved under Eric's leadership, expanding its reach through regional distribution centers like The Center For Independent Living of North Central Florida. Learn about the innovations revolutionizing assistive technologies, including SMART homes designed to enhance accessibility and autonomy for people with disabilities.
Eric sheds light on the intersection of assistive technologies and agriculture, discussing the role of FAAST in supporting farmers with disabilities through the Florida AgrAbility Project Advisory Board. We also delve into the importance of reaching rural communities and ensuring access to repair services for existing assistive technologies.
Discover how FAAST's partnership with The Center For Independent Living has empowered hundreds more individuals each year, promoting independence and enriching lives within our community. Tune in to gain valuable insights into the ever-evolving world of assistive technologies and their profound impact on independence and quality of life.
Don't forget to subscribe to The Independent Life Podcast for more inspiring stories and resources for people with disabilities!
Episode Resources:
In this compelling episode, we are joined by Victoria Giatanis, the Acting Director for Vocational Rehabilitation for the Florida Department of Education. Victoria's journey to this esteemed position is marked by her dedication to service and her role as a public servant.
From her early days in teaching, where she championed exceptional student education, particularly for those with visual impairments, to her current role shaping policies and initiatives, Victoria's impact is profound. As a mother to Mira Gaitanis, whose success as a young adult with a disability is credited to Victoria and her husband, our conversation begins with the impact of disability on family life, especially as the daughter of a veteran with service-connected disabilities.
Throughout the episode, Victoria shares valuable advice for parents of children with disabilities, drawing from her own experiences and emphasizing the importance of advocacy and navigating the education system effectively. We explore the qualities of a good educator for students with disabilities and delve into what it takes to be successful in Victoria's position as a servant of our state, focusing on collaboration, leadership, and service.
Victoria's journey is one of humility and service, driven by a deep-rooted motivation to make a positive impact in the lives of individuals with disabilities. Join us as we uncover the driving forces behind Victoria's career choices and gain insights into her role as a leader and advocate in the disability community.
Episode Resources:
Resources for parents of students with disabilities I’ve found helpful below:
For parents of students 14 and up:
In this episode, we dive deep into the heart of CIL Day 2024, a pivotal event where Centers For Independent Living convene at the Capitol in Tallahassee to advocate for the rights and needs of individuals with disabilities. Tony, reflects on this year's remarkable success, marked by increased engagement with senators and representatives, signaling a growing momentum for the cause.
Joining the conversation are esteemed guests who played vital roles in this year's event, as well as, in their every day role serving and advocating for our consumers. Jane Johnson, Executive Director of The Florida Association of Centers For Independent Living (FACIL), representing all 15 centers in Florida, provides insights into the collaborative efforts that make CIL Day possible. Brian Johnson, Chief Program Officer at the Center for Independent Living of Broward and Gold Coast, shares his perspectives on the impact of CIL Day on the local community.
A highlight of this episode is Ken Kerstetter's firsthand account of attending CIL Day for the first time. As the Associate Director at Resource Center Disability Solutions, serving Brevard and Indian River Counties, Ken offers a fresh perspective on the significance of meeting with legislators and sharing stories of empowerment.
We explore the year-round dedication that culminates in CIL Day, from grassroots advocacy to strategic planning by the FACIL legislative committee. The importance of securing funding to support independent living services is emphasized, with concrete examples illustrating the impact on individuals' lives.
Our guests delve into their sources of inspiration and the values that drive their commitment to this critical work. From a shared dedication to promoting independence to a passion for fostering inclusive communities, their insights shed light on the enduring significance of CIL Day and the ongoing fight for disability rights.
Tune in to gain a deeper understanding of the tireless advocacy efforts behind CIL Day and the transformative impact on individuals striving to live independently within their communities.
In this compelling episode, we sit down with Christina Mills, the Senior Director of Inclusive Policy & Advocacy for Elevance Health, who has just returned from a transformative trip to Japan with JIL (Japan Independent Living). Christina shares her insights into disability history, paying tribute to the influential figure, Justin Dart, and exploring the impact of his advocacy.
Delving into her personal journey, Christina opens up about her upbringing with Osteogenesis imperfecta, a genetic disorder that shaped her resilience. From navigating the challenges of growing up with a disability to being invited to the Youth Leadership Forum in California, her story is one of empowerment and determination.
Drawing from her extensive experience with the California Independent Living Council and active involvement in the state association, Christina discusses her advocacy work within sectors such as emergency management and digital access for people with disabilities.
Tony and Christina engage in a rich conversation, exploring the intricate nuances of disability identity and culture. They tackle the paradox of cultivating a distinct disability culture while advocating for inclusion. The dialogue extends to strategies on how advocates can work in unity to achieve independent living and leadership. Join us for an enlightening conversation as Christina Mills and Tony unravel the complexities of disability advocacy, paving the way for a more inclusive and empowered future.
In this reflective episode, Tony shares his thoughts on the past year, expressing gratitude for the milestones achieved by CILNCF and its role in fostering independence. But Tony, ever the visionary, isn't one to rest on laurels. He shares his philosophy of being pleased with where we are but never satisfied, always hungry for improvement—a sentiment that echoes the spirit of the entire independent living network.
The episode unfolds with Tony exploring the profound connection between the independent living philosophy and the broader state of humanity. For Tony, it's more than just an organizational goal; it's a commitment to nurturing the collective spirit of humanity, encouraging people to embrace change and strive towards becoming the best versions of themselves. With the new year, Tony looks optimistically at the challenges that lie ahead, recognizing them as opportunities for growth—emphasizing that CILNCF is in the business of receiving people going through challenges.
Disability, for Tony, is not a barrier but a thread that weaves through the fabric of the human experience, connecting us all. He shares his vision for disability to be a force that brings people together, a unifying element that transcends societal divisions. In a world that sometimes seems determined to tear us apart, Tony urges us to let disability be the bridge that brings us together.
Tony's hope and wish for the future resonate throughout the episode—to see humanity come together more and more. Join us in this inspiring journey of reflection, unity, and the unwavering pursuit of a world where everyone, irrespective of ability, is embraced, valued, and celebrated.
Welcome to another empowering episode of The Independent Life Podcast! In this episode, Tony engages in a refreshing conversation with David, the Executive Director of the Commission for the Transportation Disadvantaged. What makes this episode particularly special is the shared journey of Tony and David, both navigating the world with low vision and overcoming similar challenges in education, thanks to the support of their parents. From the challenges faced in navigating the education system to the importance of resiliency and adaptability, this episode unveils the personal stories and shared experiences that have shaped both Tony and David.
Together, they dive into David's multifaceted experiences, spanning health and humane services, employment, and transportation. Listeners will gain insights into the challenges of being a student with a disability, the importance of assistive technologies, and the need for accommodations in education. The episode delves into personal growth, emphasizing the significance of adaptability and resiliency. The conversation unfolds into a rich exploration of disability as an asset rather than a liability, as they exchange thoughts on not succumbing to society's preconceived notions about disability.
Leadership takes center stage as they dissect its true essence. It's not just about holding a position of authority but involves teamwork and taking ownership of decisions. David shares his journey in political science, public policy, and disability advocacy as he reflects on what is effective in destigmatizing disability.
Welcome back to The Independent Life Podcast, where we dive into the stories of inspiring individuals who are making a difference in the world. In this episode, Tony engages in a powerful conversation with Jennifer Ungru, a passionate advocate driving change in healthcare accessibility and systemic transformation. She shares her dedication to ensuring hospitals and healthcare facilities have the resources to provide quality care, particularly for medically fragile children. The dialogue spans diverse subjects, including navigating leadership, overcoming imposter syndrome, and adapting to the ever-evolving legislative landscape.
In this insightful conversation, Tony and Jennifer navigate through the challenges and triumphs of healthcare, shedding light on the ongoing quest for a system that aims to serve every individual. Jennifer reveals her "why" – the driving force behind her dedication to making positive changes in the healthcare industry. The discussion extends to virtues and personal growth, exploring the qualities Jennifer values and those she continues to cultivate to be a better advocate and leader. This episode offers a profound glimpse into the complexities of creating a healthcare system that meets the diverse needs of all.
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