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Freedom Requires Health Care Without Job Lock

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Freedom Requires Health Care Without Job Lock

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We cannot meaningfully declare that people are free while making access to health care depend on their employment.

In the United States, employer-sponsored insurance remains the largest source of health coverage. That means losing a job, reducing one’s hours, leaving an unsafe workplace, starting a business, becoming too sick to work, or choosing to provide unpaid care can also mean losing affordable access to doctors, medications, treatment, and other essential services.

For disabled people, this arrangement is especially harmful. It ties the care people may need to live, work, and participate in their communities to their continued ability to satisfy the demands of an employer. It can force people to remain in inaccessible, discriminatory, exhausting, or otherwise unsuitable jobs because leaving may jeopardize their health coverage. Research has found that employer-sponsored insurance reduces job mobility and can also discourage entrepreneurship. That is not freedom. It is job lock.

Health care is not a workplace benefit. It is a human right and essential social infrastructure. Access to it should not depend on whether someone works, where they work, how many hours they work, what their employer chooses to offer, or whether their body and mind can conform to conventional expectations of continuous employment.

A Declaration of Interdependence should therefore call for the United States to separate health coverage from employment and guarantee comprehensive health care to everyone.

That means building a universal system in which:

Coverage belongs to the person and continues across jobs, unemployment, caregiving, education, retirement, and changes in disability or health.

Employers no longer determine whether workers and their families can obtain essential care.

People can change jobs, organize, report discrimination, reduce their hours, leave abusive workplaces, or pursue self-employment without risking their health.

Coverage includes the services disabled people actually need, including medications, mental health care, durable medical equipment (DME), reproductive care, habilitative and rehabilitative services, personal assistance services (PAS), and home- and community-based services (HCBS), long-term services and supports (LTSS).

Eligibility is not conditioned on work, poverty, marital status, immigration status, or repeated demonstrations of deservingness.

No one must remain poor to retain the care and supports necessary to live.

Other wealthy countries organize health coverage in different ways, but the United States is an outlier in relying on employment as the gateway to health insurance. It also spends far more than comparable countries while producing worse access, equity, and outcomes.

We do not need to accept this arrangement as natural or inevitable. It is a policy choice, and policy choices can be changed.

Let us declare that health care is a right, not compensation for labor. Let us replace job lock with genuine freedom: the freedom to work, leave work, change work, provide care, create, rest, and live without placing our health and survival at the mercy of an employer.

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250 Years From Now I Hope There is More Body Doubling!

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250 Years From Now I Hope There is More Body Doubling!

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I am one of the many women in America who should have been diagnosed with ADHD at an earlier age. As a kid, it was chalked up to being smart but socially awkward, but in my last year of my PhD program, I learned that not everyone experiences executive functioning as a daily war they must fight.

As a result, the past few years have included a lot of personal reflection, learning the skills and tools best suited for me, and learning how to "put down the mask" of a neurotypical.

I am currently writing this declaration during what is called a "body doubling" session, a tool many neurodivergent folks use daily to get personal and professional tasks completed. My body doubling looks like a group accountability video call, with each member having a list of goals that we work towards in each session.

Seeing resources and information on ADHD, especially for women, grow substantially over the past few years has been validating! However, my accommodations are still unfamiliar to many, and my disability is frequently seen as an "excuse" in our society today.

So 250 years from now, I would like to imagine disability liberation in a place I cannot yet imagine due to such great progress! Even if that probably isn't realistic! I hope society is more welcoming to ADHD women, and that diagnoses in women continue to become more common and more common at a younger age.

I would like to imagine that the society of our future generations has resources and accommodations built into it in a stronger manner, body doubling included.

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As a twin, interdependence is not an abstract concept to me. It is one of the earliest truths I learned about being human: that we become ourselves through relationship, that our lives are shaped by what we give and receive, and that being connected to another person does not diminish our individuality. It helps make us who we are. That understanding has informed all of my work.

We have been taught to imagine freedom as independence. That it is the "ability" to stand alone, provide for ourselves, and ask nothing of anyone. But that version of freedom has never been available to everyone, and it has never been entirely true for anyone.

Disabled people expose the fiction of self-sufficiency. We make visible what society works hard to conceal: every life depends on care, labor, infrastructure, community, and relationships. The problem is not dependence. The problem is that access to support is distributed through systems shaped by racism, ableism, capitalism, institutionalization, and ideas about whose lives are productive enough to sustain.

Freedom must mean more than release from government interference. It must include the power and material resources to live, choose, participate, create, resist, rest, and remain in community.

- Let us declare that care is infrastructure.
- Access is a collective responsibility.
- Community living is a civil right.
- Disabled lives do not require economic justification.

- And freedom is not real when it rests on someone else’s abandonment.

The next declaration must not simply include disabled people within an old idea of freedom. It must allow disability justice to transform what freedom means, embrace pathways of collective liberation, and recognize interdependence not as a limitation on our freedom, but as the foundation from which we build the world we want to inhabit together.

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The Right to be the Author of My Own Life's Story

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The Right to be the Author of My Own Life's Story

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In a future of disabled liberation:

I am considered the expert on my own lived experience with no qualifiers attached. I am believed, seen, heard, and understood. My disability and support needs aren't dismissed or diminished by stigma, shame, fatphobia, whorephobia, misogyny, etc.

People are held accountable for their impact, not their intentions. I am not expected to educate others for free. My needs are met proactively because I am not only allowed in the space, but genuinely wanted there. I am asked what I need from others and it isn't a hypothetical or a "nice to have."

My disability is both honored as an intrinsic, inseparable part of who I am, and it is also simultaneously one of the less interesting things about me - there is space for ALL of me.

I am not your inspiration. I am not your token. I am not here to alleviate your guilt over your ableism. I am not here to give you permission to illegally park in the accessible spot. I am not here to tell you it's okay that the elevator is still broken. It isn't okay, it does impact me, and if that makes you feel bad, GOOD. You SHOULD feel guilty when you do harm, and I will not tell you it's okay to opt out of empathy.

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As the United States reflects on 250 years since the Declaration of Independence, I find myself asking a different question: What would freedom look like if disabled people were the ones defining it?

I ask that question as a proud disabled woman and as the parent of children whose disabilities and support needs are different from my own. I also bring the lived experience of being a spouse to someone who acquired a disability through an injustice as an adult, which has shaped my understanding of disability not only as identity and policy, but as something families navigate together in real time.

My life has taught me that disability is not a singular experience. It is diverse, complex, and deeply interconnected. I have experienced disability as an individual navigating a world not designed for me, and I have experienced it as a mother advocating alongside children whose journeys through disability have been different from mine. Those experiences have convinced me that freedom is not the absence of dependence. Freedom is having the supports, relationships, rights, and opportunities that allow all of us to live the lives we choose.

For generations, disabled people have expanded the nation's understanding of freedom. We have demonstrated that dignity is not found in isolation, but in belonging. That independence is often made possible through interdependence. That access, accommodation, care, and community are not exceptions to freedom; they are among its essential ingredients and core to the success of America.

Yet our movement still carries divisions that limit our power.

One of the most significant is the distance that too often exists between disability self-advocates and family advocates. Too frequently, systems encourage us to see ourselves as separate constituencies rather than members of the same community. We create different conferences, different advocacy agendas, different funding streams, and sometimes even different language to describe ourselves.

That separation often begins in childhood.

We refer to disabled children as "children and youth with special health care needs" or by other service-based labels that may be useful for program administration but fail to communicate a deeper truth: many of these children are not simply recipients of services. They are disabled people. They are the next generation of the disability community.

Families deserve support not only in navigating services, but in understanding disability identity, disability culture, disability history, and disability rights. Disabled children should grow up knowing they are part of a community with a rich legacy of leadership, creativity, resilience, and social change. Parents should be welcomed into that community from the beginning, not years later after they have spent countless hours fighting systems alone.

The disability movement cannot reach its full potential if we continue to organize ourselves primarily around service systems, diagnoses, or funding streams. Too much of our advocacy has become fragmented. We chase appropriations, defend individual programs, and fight over small pieces of systems that were never designed to meet all of our needs.

Education advocates fight education battles. Medicaid advocates fight Medicaid battles. Employment advocates fight employment battles. Disability organizations compete against one another for limited resources. Family organizations, self-advocacy organizations, and diagnosis-specific or disability-type organizations often work in parallel rather than together.

Each of these fights matters. But fragmentation comes at a cost.

Every hour spent protecting our corner of the system is an hour not spent building collective political power.

The disability community is one of the largest minority communities in the nation. When combined with our families, caregivers, friends, and allies, our numbers are enormous. Yet too often we advocate as a collection of small groups rather than a unified movement capable of shaping the future of this country.

The next 250 years should be different.

Let us commit to shared language, shared purpose, and shared power. Let us build a movement where disabled people and family advocates work in partnership, not because our perspectives are identical, but because our futures are connected. Let us raise disabled children who know they belong to a proud community and who see themselves as future leaders, advocates, and decision-makers.

The Declaration of Independence offered a vision of liberty rooted in individual rights. The disability community has something equally important to contribute to the American story: a Declaration of Interdependence.

A declaration that access is freedom.

That belonging is freedom.

That care is freedom.

That community is freedom.

And that the measure of the next 250 years will not be how independent we become, but how well we learn to build a society where everyone has what they need to thrive, contribute, and belong.

That is the unfinished promise of freedom. And it is ours to complete.

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I imagine a future where access is treated as an ordinary expectation of public life. Freedom is measured by whether our communities are willing to design themselves around the reality that every person will both give and receive care throughout their lives.

As an urban designer, I've come to believe that the places we build are declarations of who belongs. Our spaces communicate whose bodies, minds, and ways of moving have been anticipated and whose have been treated as exceptions. Accessibility then is one of democracy's most visible expressions.

Interdependence asks us to reject the myth that dependence diminishes our humanity. Instead, it recognizes that every community is sustained through relationships of care, shared responsibility, and collective investment. Disabled people have long understood this truth and, in doing so, have expanded what freedom can mean for everyone.