Why I Wrote to Secretary Kennedy
Reader NoteThis essay is written for blind people, disability advocates, public health professionals, healthcare systems leaders, and anyone trying to understand why accessibility is not only a civil rights issue. It is also a public health issue, and a nonpartisan one.
Companion DocumentRead my shorter public comment letter to Secretary Kennedy here.
I am publishing this essay alongside a shorter public comment letter to Secretary Robert F. Kennedy Jr. about the Department of Health and Human Services decision to delay Section 504 web and mobile accessibility compliance deadlines.
President Mark Riccobono and the National Federation of the Blind have already made the civil rights and enforcement argument. Their May 5, 2026 letter names what is at stake for blind people when accessibility protections are delayed. I am writing to build on that leadership by naming the public health issue.
Blindness itself is not the public health crisis. Ableism is.
That sentence is the reason I am writing. It is also the reason I believe blind people, public health professionals, healthcare systems, disability organizations, and policymakers across the political spectrum need a shared language for this moment.
The argument in brief
This essay argues four things:
- Accessibility is public health infrastructure.
- Ableism functions as a structural determinant of health.
- Inaccessible digital systems create preventable harm, hidden labor, and cumulative stress.
- Delaying accessibility does not eliminate burden. It transfers burden onto blind and disabled people.
Why I am writing with all of my hats on
I am Laura Millar, MPH, M.A., MCHES: a blind, neurodivergent, single mother navigating multiple chronic illnesses while raising a disabled child. We both see specialists, which means I have spent years navigating healthcare systems both as a patient and as a parent.
My roles also include public health professional, sociologist, health educator, sexuality educator, consultant, coach, community organizer, advocate, Second Vice President of the National Federation of the Blind of San Francisco Chapter, and board member of the National Federation of the Blind of California. My work has focused on ableism, blind inclusion, consent culture, health literacy, sexuality, disability justice, and accessible systems.
Those identities are not separate in this essay. They are the reason I can see the problem from several directions at once.
As a public health professional, I understand that health outcomes are shaped long before anyone enters an exam room. Transportation, housing, employment, information access, discrimination, privacy, communication, trust, and emergency preparedness all shape health.
As a blind person, I know what it means to move through systems built around sight as the default.
As a parent, I know what it means to manage care, referrals, forms, school systems, specialists, medications, insurance, appointments, and records while systems assume that every parent can see, click, print, scan, visually verify, and visually monitor everything.
As a patient navigating chronic illness, I know what it means to need continuity, accuracy, privacy, and autonomy in healthcare.
As an advocate in the organized blind movement, I know that blind people are not asking to be rescued. We are asking for the barriers to come down so we can live, work, parent, learn, organize, and participate on equal terms.
And as someone whose work includes consent culture, I know that access is not only about whether someone can technically obtain information. Access is about whether a person can say yes, say no, ask questions, understand choices, change their mind, communicate privately, and be treated as the decision-maker in their own life.
What the blind movement taught me first
When I first went blind more than twenty years ago, I thought blindness was the issue.
That was understandable. Losing sight changes how a person moves through the world. It changes how information arrives. It changes how strangers respond. It changes how institutions categorize you.
The organized blind movement and the National Federation of the Blind taught me otherwise. Through training, mentorship, organizing, leadership development, and the company of blind people who were already living the lives they wanted, I learned the truth that has shaped every part of my work since: blindness was not the issue. Ableism was. Low expectations, discrimination, and inaccessible systems were the barriers. The Federation’s insistence that blind people can live the lives we want gave me a framework for naming the difference between blindness itself and the barriers built around it.
Public health is the field I love, but it is not where I learned this lesson. Public health is where I found the systems language for it. After the movement showed me the truth, public health gave me the vocabulary to argue for it in policy rooms: prevention, root causes, structural barriers, community health, health literacy, social determinants of health, and systems change. Both lenses point at the same thing. Both say the deepest barriers are external.
I name the sequence because it matters. The blind movement did not arrive at this analysis through public health. Public health is still catching up to what the blind movement has been saying for decades.
Public health needs to catch up
Too often, disability is treated as a specialized topic outside the main health equity conversation. Too often, accessibility is treated as a technical compliance detail instead of a condition that shapes whether people can obtain information, make decisions, protect privacy, and participate in care.
If public health can recognize housing, transportation, food access, environmental exposure, social isolation, poverty, and discrimination as health issues, then public health must also recognize accessibility as a health issue.
And if public health can name structural racism, sexism, poverty, and geographic isolation as drivers of health inequity, then public health must also name ableism as a structural driver of health inequity.
That is the field-level shift I am writing toward. Not a Republican shift. Not a Democratic shift. A shift in how the field of public health understands disability and accessibility, which has been overdue for a long time.
The struggle has been external
The struggle has been external again and again.
It is the inaccessible patient portal. It is the form that cannot be completed with a screen reader. It is the test result displayed in an image. It is the receptionist who assumes someone else must help me. It is the consent process that assumes sighted reading. It is the app that breaks at the exact moment I need to schedule, refill, upload, sign, verify, or respond.
It is the healthcare system that says it values autonomy while repeatedly designing processes that take autonomy away from disabled people.
We are not vulnerable because we are blind.
We are made vulnerable when critical health, safety, and emergency information is not accessible.
The hidden costs of inaccessibility
Some of the most serious costs of inaccessibility are hidden because they happen in private. They happen at kitchen tables, in phone trees, in transportation planning, in portal messages, in forms that have to be redone, in appointments that have to be rescheduled, and in the emotional calculation of whether it is worth fighting another inaccessible system today.
For me, the burden has included arranging transportation to specialists, decoding inaccessible healthcare forms, tracking referrals, trying to understand inaccessible test results, managing specialty care, and navigating digital portals that were not built for independent blind access. For many blind people, these burdens are layered on top of work, parenting, caregiving, poverty, chronic illness, or other disabilities.
Public health has language for this. These are social determinants of health: transportation access, information access, technology access, healthcare navigation, privacy, discrimination, economic strain, emergency preparedness, and the ability to participate in decisions about one’s own body.
There is also an emotional cost. Repeatedly being blocked, doubted, rerouted, or forced to disclose private information creates cumulative stress. Public health and sociology already recognize that chronic stress from discrimination and exclusion can affect bodies and health over time. For blind and disabled people, inaccessible systems are part of that stress exposure. That exposure does not stay in one organ system. It compounds the chronic disease burden the current administration has identified as a national priority.
This is not a claim that blindness itself causes poor health. It is the opposite. The point is that systems can create health risk when they force people to spend time, energy, privacy, and emotional capacity overcoming barriers that should not exist.
Why emergency information matters
Emergency preparedness makes this especially clear.
During COVID-19, testing information, vaccine appointments, exposure guidance, isolation rules, public health dashboards, and emergency updates often moved through digital systems that were not reliably accessible. During California wildfire seasons, when smoke conditions, power shutoffs, evacuation alerts, air-quality data, shelter information, and transportation options could determine safety, inaccessible information created avoidable risk.
Blind people are often described as a vulnerable population. I want to be precise: we are not vulnerable because we are blind. We are made vulnerable when critical health, safety, and emergency information is not accessible.
Vulnerability is produced when public systems fail to provide the information people need to make decisions, protect their health, and act in time.
Why the Section 504 delay is a public health issue
This is why the Section 504 delay matters so much.
HHS has delayed compliance dates for web and mobile accessibility requirements that apply to recipients of HHS funding. For blind and disabled people, those digital systems are not optional conveniences. They are often the front doors to healthcare, public benefits, emergency information, insurance, appointment scheduling, test results, consent forms, referrals, and family care management.
When those systems are inaccessible, health is affected. Care may be delayed. Privacy may be lost. Autonomy may be reduced. Family members may be pulled into tasks that should be independently accessible. Disabled parents and patients may be forced to disclose information simply to navigate systems that others use privately.
That is not only a civil rights issue. It is a public health issue.
The burden of delay does not disappear. It is transferred. It is transferred from institutions to patients, from digital vendors to disabled families, from compliance planning to private workaround labor, and from public systems to the very people Section 504 was designed to protect.
Informed consent is on the line
I want to name one piece of this directly, because it sits at the intersection of public health, civil rights, and an issue the current Secretary has spoken about with conviction across many years and many platforms: informed consent.
Informed consent is not a signature. It is the process by which a person reads, understands, asks questions about, and freely agrees to a medical decision. If a blind patient cannot independently read a consent form, a medication label, a treatment description, a lab result, a side-effect warning, or an after-visit summary, then consent is not informed. It is constructed around that patient by people who can see. The very dynamic informed consent exists to prevent — decisions being made for someone instead of by them — is the default state of an inaccessible healthcare system.
That is true regardless of which administration sets the policy. A federal commitment to informed consent that does not include accessible information is not a commitment to informed consent. It is a commitment to informed consent for some.
Building on the Federation
The National Federation of the Blind has long argued that blindness is not the characteristic that defines our future. Low expectations, discrimination, and inaccessible systems are the barriers.
That philosophy is also a public health framework, whether or not public health has fully recognized it.
Public health asks what conditions allow communities to live, participate, and thrive. It asks what systems create risk. It asks where preventable harm is being produced. It asks whether policy is reducing inequity or reinforcing it.
President Riccobono and the Federation have made the legal and civil rights case against delaying Section 504 accessibility protections. I am adding that the delay also has population health consequences.
What HHS should do
HHS should reconsider the delay. If any implementation period remains, it should be an active protection period, not a waiting period.
That means HHS should make clear that existing Section 504 obligations remain in force now, require immediate accessible alternatives when systems are not yet accessible, support under-resourced providers with technical assistance and model policies, prevent federal dollars from purchasing inaccessible technology, set public milestones, and include blind and disabled people directly in implementation, testing, monitoring, and evaluation.
This is not a partisan ask. Disability does not sort by party. Blind and disabled people live in every state, every district, and every coalition. Accessibility protects privacy. It supports family independence. It reduces unnecessary dependence on government and on strangers. It improves government efficiency. It strengthens trust in health institutions. It makes prevention possible for people who are currently blocked from the digital front door of care. There is no version of restoring public trust in health that excludes the people most reliant on the system working.
Closing
I am writing to Secretary Kennedy because accessibility belongs at the center of public health policy, and because the values his Department has named — prevention, root causes, informed consent, family agency, and trust in health institutions — cannot be delivered without it.
I am writing because the organized blind movement taught me, long before public health did, that the issue was never blindness. The issue was the world built around the assumption that everyone sees.
I am writing because public health is the field I love, and I want it to grow up on this question.
Blindness is not the public health crisis. Ableism is.
Accessibility is not charity. It is prevention.
It is public health infrastructure.
It is how disabled people protect our health, our privacy, our families, and our freedom to participate in public life. And it is how a public health system — under any administration, in any political moment — earns the trust it asks the public to give it.
About the author
Blind public health professional, sociologist, sexuality educator, consultant, coach, community organizer, and advocate. Second Vice President of the National Federation of the Blind of San Francisco Chapter, and board member of the National Federation of the Blind of California.
Her work focuses on ableism, blind inclusion, consent culture, accessibility, health literacy, sexuality, disability justice, and systems change. Based in Oakland, California.
laura@lauramillar.com · www.lauramillar.com
For people who want to act
There are several ways to act. Please check official instructions before submitting because deadlines and requirements can change. Public comments are posted online, so do not include private information you do not want in the public record.
- Submit a Public Comment Submit your comment through Regulations.gov using Docket No. HHS-OCR-2026-0133 or RIN 0945-AA30. The official Federal Register materials currently list the public comment deadline as July 6, 2026. A clear first-person comment can be powerful.
- Read the Federal Register Rule Review the Federal Register rule and submission instructions. The notice includes docket information and encourages electronic attachments in Microsoft Word format. PDFs should be searchable rather than scanned.
- Mail a Written Comment If mailing is more accessible for you, address your comment to: U.S. Department of Health and Human Services, Office for Civil Rights, Attention: Disability IFR, RIN 0945-AA30, Hubert H. Humphrey Building, Room 509F, 200 Independence Avenue SW, Washington, DC 20201.
- Share Your Healthcare Access Story Share your story with the National Federation of the Blind by emailing story@nfb.org or leaving a voicemail at 410-659-9314, extension 2444. NFB is collecting short, first-person accounts about barriers in hospitals, clinics, insurers, pharmacies, and other HHS-funded services.
- File an HHS OCR Complaint If you personally experienced discrimination in an HHS-funded program, you can file an HHS OCR civil rights complaint. A rulemaking comment tells HHS what to do with this rule. An OCR complaint asks HHS to investigate a specific barrier.
- Read the Federation’s Letter Read President Riccobono and the National Federation of the Blind’s letter and support the Federation’s advocacy opposing delayed accessibility protections.
- Read the HHS Announcement Read the HHS announcement of the interim final rule so you can respond directly to the rationale HHS gave for delaying the compliance deadlines.
© 2026 Laura Millar. All rights reserved.
This essay may be shared with attribution and a link back to www.lauramillar.com.