Blindness, “Cures”, and Ableism, Molly Burke’s View

Why this conversation matters for health

Health content often treats disability like a problem to fix. That framing can shape care decisions, mental health, family expectations, and even how schools and workplaces respond.

This discussion matters because it shows how language, systems, and stigma can affect health outcomes just as much as a diagnosis does.

Although the video is not about blood sugar directly, it is deeply about what many people experience in chronic health conditions, the pressure to be “fixed,” the stress of being disbelieved, and the real physical toll of prolonged anxiety. Those same forces can worsen self care, sleep, appetite, and follow up with clinicians, all of which also matter in metabolic health.

The unique perspective here is not that blindness is easy. It is that blindness is livable, and that the constant push toward a “cure” can be psychologically harmful when it is paired with pity, fundraising narratives, and a world that refuses to accommodate.

Important: If you or someone you love is experiencing sudden vision changes, new hallucinations, or severe mood symptoms, it is reasonable to seek urgent medical advice. Rapid changes deserve professional evaluation.

“I live in a world that’s not made for me”, disability as a daily systems issue

The core claim is simple: the problem is not only the body, it is the environment.

“I live in a world that’s not made for me” is not a metaphor in this conversation. It shows up as travel stress, social reactions, inaccessible schools, and strangers deciding what blindness should look like.

This framing is closely aligned with the “social model” of disability, the idea that impairment exists, but disability is often created or amplified by barriers in society. You can see it in small moments, like needing to pre board with a guide dog and not being able to read the facial expression of the person sitting next to you, then having to manage their reaction without visual cues. You can also see it in larger moments, like an institution refusing accommodations because it is inconvenient.

A useful way to apply this perspective is to ask two questions whenever a health condition affects daily life:

That second question is where many people get stuck, because barriers can feel “normal” to those who do not face them.

Retinitis pigmentosa, what Molly describes, and what it can look like clinically

Molly describes being diagnosed at age 4 with retinitis pigmentosa (RP), then losing most of her remaining functional vision rapidly at 14, leaving “only light and shadow.”

Two symptoms she highlights are common across many RP types: night blindness and tunnel vision. Her description of tunnel vision is vivid, going from full vision to “a toilet paper roll,” then “a straw,” then “a pinhole,” then closing.

Progression is not identical for everyone.

A key point in the video is that RP is a broad label, and genetics matter. She repeats what her geneticist told her, that saying “retinitis pigmentosa” is like saying “cancer,” it is a category, and the specific subtype changes the likely course. She later learned her gene diagnosis, “TULP1,” described as one of the rarer forms associated with earlier and faster significant vision loss.

From a research standpoint, RP is indeed genetically diverse, with many genes implicated and wide variation in age of onset and progression. For a high level overview, the National Eye Institute’s retinitis pigmentosa pageTrusted Source explains symptoms, inheritance patterns, and the general idea that peripheral and night vision are often affected early.

What “cure” can mean versus what people hear

A sharp insight in the video is that the word cure is often “misrepresentative.” When many people hear cure, they imagine a full return to “20/20” vision. But in real world medicine, progress may look like slowing decline, stabilizing function, improving navigation, or treating complications.

This is one reason Molly says she is not against treatment that stabilizes.

It is also why the conversation pushes for more precise language. If a therapy is meant to slow progression, calling it a cure can distort expectations and set up emotional harm when reality does not match the marketing.

Did you know? Many eye conditions have treatments that slow or reduce progression without restoring typical vision. The NEITrusted Source regularly distinguishes between prevention, treatment, and vision rehabilitation, which can be a helpful way to think about goals.

The harm of false hope, pity marketing, and “inspiration porn”

One of the most distinctive parts of this video is not the medical description of RP, it is the description of how fundraising narratives shaped identity.

Molly shares that at age 5 she became the face of a charity raising money for a cure for her disease. She did fundraising events, press, and donor speeches, telling people why it was important that she be cured. Her family was told, verbatim, that they believed she would be cured in 10 years.

Then, 10 years later, she went blind.

The emotional aftermath is complicated and important. If you grow up believing “if you do this, you will help cure yourself,” and then you lose vision anyway, you are left with grief plus betrayal plus a new identity question, “If I was told my whole life I need to be cured to be good enough, how can I feel good enough now?”

This is not an argument against medical research. She explicitly separates research from PR. The critique is about how disability is marketed to “pull at heartstrings,” often through pity, tragedy framing, and imagined future losses.

Her friend’s term for a related phenomenon is “inspiration porn,” the idea that disabled people are used as motivational objects for non disabled audiences, either as tragedies to avoid or heroes to admire for doing ordinary things.

The health relevance is that narratives can act like chronic stressors. When a child internalizes “my life is awful unless I am cured,” that belief can affect mental health, social development, and willingness to use assistive tools.

What the research shows: Chronic stress is linked with changes in sleep, appetite, and digestive function, and it can worsen anxiety and depression symptoms. For an accessible overview of stress effects on the body, see the American Psychological AssociationTrusted Source.

When people say “you don’t look blind”, stigma, misconceptions, and what to do instead

A repeated experience in the video is being told, “You don’t look blind.”

That phrase can sound like a compliment to the speaker, but it often lands like an accusation. It implies there is a correct “look” for blindness, and if you do not match it, you must be exaggerating or lying.

The misconceptions she lists are specific:

These are media shaped beliefs. When disability representation is rare and stereotyped, people learn “rules” that are not true. The conversation cites a low disability representation figure in media and notes that much of it is created by non disabled people, which can perpetuate tropes.

A practical reframe is this: blindness is not always total darkness, and vision loss can be partial, variable, or different across lighting conditions.

If you are unsure how to interact, the safest approach is to avoid interrogation and offer normal respect.

Try this instead of “you don’t look blind”:

Short. Neutral. No pity.

Pro Tip: If you offer help, be specific and give an easy out. “Do you want an arm to the counter, or are you good?” is often better than “Are you okay?”

Charles Bonnet syndrome, seeing things that aren’t there without mental illness

The video includes a detailed description of Charles Bonnet syndrome (CBS), which is one of the most practically useful educational moments.

Molly describes CBS as visual hallucinations that are not related to mental illness. She notes that it can range from realistic scenes, like seeing an old time horse and carriage in a living room, to abstract patterns and lights.

Her personal experience is constant “blue, green, and purple fireworks” filling her visual field “24/7,” eyes open or closed.

That is a lot to carry, especially if you fear people will misunderstand.

The explanation offered is that when vision loss happens rapidly, the brain “panics” and tries to create new visual pathways, producing hallucinations. While the exact mechanisms are still being studied, the general concept is consistent with how CBS is commonly explained, reduced visual input can lead the brain’s visual processing areas to generate images.

From a clinical education standpoint, CBS is recognized as a phenomenon that can occur in people with significant vision loss, including from retinal disease and age related macular degeneration. A helpful overview is available from the American Academy of OphthalmologyTrusted Source.

The video also raises a critical point about older adults. If an elderly person reports seeing things, clinicians or family may jump to dementia or psychosis, when the person may be experiencing CBS in the setting of vision loss.

What to do if you or a loved one reports visual hallucinations

This is not a place for self diagnosis, but it is a place for smart next steps.

If hallucinations are sudden, distressing, or paired with confusion, severe headache, weakness, or other neurologic symptoms, urgent evaluation is appropriate.

Bullying, invalidation, and the mind body spillover into physical health

The conversation does not present bullying as a “sad story.” It presents it as a health exposure.

Molly describes classmates turning on her and, more shocking, adults invalidating her. She reports teachers saying she was faking, and a guidance counselor telling her parents it was her fault because she was being “dramatic.” Her psychologist and ophthalmologist had to explain there was “scientifically no way” she was faking.

Being disbelieved while you are actively losing vision is a particular kind of stress.

She connects that stress to severe depression, anxiety, and complex PTSD, and then describes physical consequences, digestive issues, barely being able to eat, significant weight loss, and loss of her period.

That mind body connection is well established in health research. Stress and anxiety can affect gut function through the brain gut axis, and prolonged stress can contribute to appetite changes and weight changes. For a lay friendly explanation of stress and digestive symptoms, the National Institute of Diabetes and Digestive and Kidney DiseasesTrusted Source offers background on digestive function, and the APA stress overviewTrusted Source describes systemic effects.

A practical takeaway is that mental health support is not secondary to “real” medical care. It is part of preventing downstream physical harm.

Accommodations are healthcare too, school, work, and the “private rules” problem

A striking systems point in the video is about school accommodations.

Molly describes attending a prestigious private school during her vision loss. She highlights that private schools may not be required to provide accommodations in the same way public schools are, and she describes resistance to having a vision itinerant teacher and to providing accessible tools.

This matters because accommodations are not “extra.” They can determine whether a student stays engaged, whether stress becomes chronic, and whether a person internalizes shame.

If you are navigating accommodations, it helps to think like an organizer, not a supplicant.

In the US, students in public schools may be eligible for supports under IDEA or Section 504, and college students may use disability services. Private institutions vary, so it can be useful to ask directly what policies apply.

For a starting point on accommodations and rights in education, the US Department of Education Office for Civil RightsTrusted Source provides guidance on disability discrimination and protections.

Guide dogs in public, the respectful script that actually helps

The video opens with travel and a guide dog, and it turns into a clear public etiquette lesson.

The key message is blunt: pretend the dog does not exist.

She compares her guide dog to a wheelchair, not in emotion, but in function. It is mobility equipment. Touching, talking to, making kissy noises at, or even prolonged eye contact with the dog can distract it from working.

This is especially relevant in places like planes, grocery stores, and sidewalks, where a split second distraction could affect safety.

Here is a practical “do and don’t” list based on the conversation.

This is less about being perfect and more about being predictable.

Resource callout: Want a simple public script? Save this: “Hi. Would you like help finding the door, or are you all set?” Then wait.

Practical steps you can take today, if you are losing vision or supporting someone who is

This section turns the video’s themes into actions. Not because action fixes everything, but because small changes can reduce daily friction.

How to talk about prognosis without accidentally causing harm

The video shows how “optimism” can become a burden when it is delivered as certainty.

If you are a clinician, educator, family member, or friend, consider these shifts:

This aligns with patient centered care principles emphasized broadly by organizations like the Agency for Healthcare Research and QualityTrusted Source.

A numbered plan for navigating rapid vision changes

Supporting a child with vision loss, what this video suggests

Molly’s childhood experience highlights a painful reality, adults set the tone.

If you are supporting a child, consider these practical approaches:

Expert Q&A

Q: If someone is blind, can they still have some vision or “look at” things?

A: Yes. Blindness is often a spectrum, and many blind people have residual vision, like light perception, shadows, or limited central or peripheral vision. Eye movements, blinking, and “facing” a sound source do not prove someone can see, they may reflect habit, orientation, or using other cues.

If you are unsure, it is usually best to take the person at their word and ask what support is helpful, rather than testing them.

Health Writer Review, plain language educational summary

Expert Q&A

Q: Are visual hallucinations always a sign of dementia or mental illness?

A: No. Visual hallucinations can have many causes, including medication effects, neurologic conditions, delirium, and also Charles Bonnet syndrome in people with significant vision loss. The key is that hallucinations deserve medical attention, especially if they are new, distressing, or paired with confusion or other symptoms.

An eye clinician and primary care clinician can help sort out possibilities and decide what evaluations are appropriate.

Health Writer Review, plain language educational summary

Key Takeaways