How would you define independent living?
Independent living is about being in control of your own life. It means having the ability to determine, access, and utilize the supports and services you need—not just to live independently, but to live well independently. There is a crucial difference between the two.
For example, we can help someone transition from a nursing home to community living. But if that person remains disconnected from family, friends, and the social activities we all enjoy, they are simply moving from one form of isolation to another. True independent living means having the freedom to build relationships, pursue personal interests, and participate fully in community life.
Living well independently means having the opportunity to aspire to and set goals and achieve your dreams—just like anyone else. It is more than survival; it is about living with purpose, making an impact, and ensuring that everyone has the opportunity to do the same.
Living well independently also means having access to the supports and services needed to be a productive and engaged citizen. As a C-4 quadriplegic, I have always understood this firsthand. I could have chosen to simply get by on Supplemental Security Income (SSI), but I sought something greater. I pursued my Master of Social Work (MSW) and built a meaningful career.
My journey was made possible through a network of essential supports—attendant care, vocational rehabilitation services, transportation, housing, and more. These services were not just lifelines; they were the foundation that enabled me to thrive, to pursue higher education, and to become employed.
But my contributions did not stop there. Investing in me provided a greater return on investment. Over the past 37 years, I have worked, paid taxes, invested my earnings into the economy, employed others, mentored peers, and fiercely advocated for positive changes and stronger laws to protect the rights of people with disabilities.
How has the landscape of independent living changed over the last few decades?
Over the past two years working with the Biden administration, I witnessed significant progress in advancing disability rights. One of the most notable achievements was the finalization of Section 504 rules, a landmark step that strengthened protections that had remained largely unchanged for over 50 years. These final rules brought about meaningful changes, including:
- Stronger Protections Against Discrimination: Medical providers are now explicitly prohibited from discriminating against individuals with disabilities, ensuring that biases cannot deny access to care.
- Enhanced Accessibility Requirements: Medical equipment must be accessible, closing gaps that left many without essential care.
- Expanded Protections Under the Americans with Disabilities Act (ADA) and Affordable Care Act (ACA): These landmark laws were reinforced, ensuring broader coverage and stronger enforcement.
- Travel Safety for People with Disabilities: New airline safety rules were established, protecting individuals who travel with complex wheelchairs from mistreatment and damage, holding airlines accountable.
- COVID-19 and People with Disabilities: A report to Congress exposed how the government’s response to COVID-19 led to unnecessary deaths among people with disabilities. Our findings highlighted a harsh reality: society showed more compassion to those in prisons, where people were separated to prevent the spread of the virus, than to residents of nursing homes, where they were warehoused in enclosed spaces—resulting in tragic loss of life. Our message was clear—when the next pandemic comes, not if, we must do better.
But today, I fear we are witnessing a dangerous rollback of these hard-won gains. The new administration appears determined to turn back the clock, weakening protections, undermining federal enforcement, and creating an environment where people with disabilities can be more easily institutionalized, discriminated against, or denied access to essential services.
Where we once had strong federal protections, we may now be forced to rely on state laws to protect our basic civil rights. This is not just a policy shift, but a fundamental threat to the progress we have fought so hard to achieve. We must remain vigilant, organized, and relentless in defending the rights of people with disabilities.
What are the biggest threats to the independent living movement right now?
The new administration's actions pose a direct threat to the rights of multi-marginalized groups, especially people with disabilities. Across the country, 17 states are now pursuing a lawsuit challenging the updated Section 504 rules from 2024, which include information and guidance about disability discrimination, particularly for healthcare and education (Texas v. Kennedy). This is a deeply troubling development that threatens the hard-won rights of people with disabilities.
Section 504 is a foundational civil rights law. It requires any entity receiving federal funding to ensure that individuals with disabilities can fully participate. It also mandates community integration—affirming that people with disabilities should live in their communities rather than be isolated in institutions. This principle is at the heart of independent living and disability rights.
The rule clarifies the obligation to provide services in the most integrated setting appropriate to an individual's needs, aligning with the Olmstead decision, prioritizing. community-based services over institutionalized care, wherever possible. This lawsuit effectively turns back the clock to a time when people with disabilities were kept out of sight and out of society. History reminds us of the dark era of "ugly laws," when people with disabilities were banned from being seen in public. It was illegal for them to exist visibly within the community. This was not that long ago.
We are dangerously close to repeating this shameful past. If Section 504 rules fall, it could become easier for people with disabilities to be institutionalized—despite clear evidence that community living is not only the better option, but also more cost-effective than institutional care.
This is not just about Section 504. If these attacks succeed, the ADA could be next. We are already seeing efforts to undermine the ACA’s protections.
We cannot stand by and watch the rollback of decades of progress. We must defend Section 504 and all civil rights protections for people with disabilities—because our rights and our dignity are not negotiable.
With the current administration’s elimination of the Administration for Community Living (ACL), which oversaw independent living agencies on a national level, where does that leave NCIL?
The ACL has long provided critical oversight for independent living programs across the country, supporting 403 CILs and 330 branch offices. However, recent proposals threaten to dismantle this carefully coordinated system by shifting responsibility for these programs under the Administration for Children and Families (ACF).
This proposed change is deeply concerning. The creation of ACL in 2012 was a deliberate move to unify and coordinate services for people with disabilities and older adults—an effort to replace a fragmented and confusing system. Before ACL, services were scattered across multiple agencies, creating a maze of confusion for people with disabilities. ACL brought clarity, expertise, and dedicated leadership to the field, ensuring that support for independent living was comprehensive and efficient.
If this shift to ACF goes forward, we face a loss of specialized knowledge, experienced staff, and leadership that truly understands independent living. We do not yet know how many staff will be transferred, but we are certain that the knowledge, skills, and values of ACL will not automatically transfer to ACF.
Even more troubling is the potential return to the outdated and harmful "medical model" of disability. Under this model, people with disabilities are seen as problems to be fixed, rather than individuals with rights and abilities. The social model of disability—which emphasizes removing societal and attitudinal barriers—is at the heart of independent living. It recognizes that the real barriers people with disabilities face are not within them, but within an inaccessible society, with oppressive attitudes about people with disabilities.
This proposed change would threaten that understanding. It risks reimposing a top-down, paternalistic approach where professionals decide what people with disabilities need, rather than listening to those who live with disabilities every day. Such a shift would force us to start over in our fight for self-determination and equality.
We must resist this move. We cannot allow the hard-won progress of the independent living movement to be undone.
What is the National Council on Disability (NCD), where you serve as a Council Member, working on now?
Currently, we are focused on a comprehensive report that envisions a future where transportation is accessible to all. Despite advances, people with disabilities still face barriers in accessing rideshare services like Uber and Lyft. We are challenging Congress to take decisive action, including mandating wheelchair-accessible autonomous vehicles, which could be transformative for our community.
But our work doesn’t stop there. We are confronting another deeply ingrained bias: the use of Quality-Adjusted Life Years (QALYs) as a metric by the medical and insurance industries. QALYs devalue the lives of people with disabilities, assigning them a lower quality of life compared to those without disabilities. This unjust measure is used to determine the worth of life-sustaining services. We are demanding that Congress and industry stakeholders reject this discriminatory metric.
Throughout its history, the NCD has been a trusted voice for people with disabilities, informing Congress and the President on critical issues. Our work is far from over, and I remain committed to ensuring that the voices and needs of people with disabilities are heard, respected, and acted upon.
Is there anything you would like to add?
I often say this in my speeches: Ableism is our greatest challenge. Throughout my life, I have witnessed the gradual removal of physical barriers for people with disabilities. Yet, I am certain that I will not see the complete dismantling of the most formidable barrier of all—societal attitudes.
For generations, people have been taught misconceptions, stigmas, and stereotypes about individuals with disabilities. These false beliefs have been ingrained in our culture, passed down from one generation to the next, reinforced by media and society. People rarely stop to question their worldview—where it comes from, how it was shaped, or whether it is flawed. Most simply accept it as truth.
But worldviews can change. The biases and misconceptions that take a lifetime to learn can be unlearned. This process is not quick or easy; it demands self-awareness, humility, and a willingness to challenge what we have always believed. It requires people to recognize that the world we live in was not designed for everyone, and that those who strive to make it inclusive are often met with resistance rooted in outdated beliefs.
True change begins when individuals acknowledge that they may have misunderstood people with disabilities. When they commit to questioning and reshaping their perspectives, we take a step closer to a world that is genuinely accessible and inclusive for all. We have a long way to go, but the journey begins with recognizing the need to change.
