From the outside, it probably looked like kindness. A man who doesn’t speak is lying in a hospital bed. A nurse turns on the TV, finds a children’s cartoon, and leaves it playing. Something gentle and bright to pass the time.
My brother was fifty years old.
When I asked the nurse why she had chosen a children’s show for a fifty-year-old man, she didn’t have an answer. She hadn’t thought about it, because she didn’t think she needed to. Being nonspeaking, intellectually disabled, and in a hospital bed had been enough for her to decide who he was. She got educated quickly.
What it looks like vs. what it is
This is the gap siblings live in. To someone looking in, a moment like this is small, maybe even sweet. To us, it is a clear signal of how a person is being seen and, often, how they will be treated.
Putting on cartoons for a middle-aged man is infantilization. It treats an adult as a child because of how he communicates or what his diagnosis is. It feels harmless, and that is why it persists: no one gets in trouble for it. But the assumption behind it doesn’t stay on the TV. The same assumption shapes how staff talk to the patient, or past him to whoever is in the room. It shapes whether his pain is taken seriously and whether his preferences are asked about at all. It shapes decisions about his care.
When the assumption becomes a safety problem
There is a name for what happens when that assumption reaches clinical decisions: diagnostic overshadowing. It means a new symptom gets attributed to a diagnosis someone already has, instead of being investigated as something new.
For a nonspeaking adult with IDD, this can look like pain being read as “behavior.” Agitation, rocking, refusing food, hitting their own head. These can be ways a person communicates that something hurts. If staff already see that person as a child, or see the disability before the person, they are more likely to stop looking.
This isn’t a fringe concern. In 2022, The Joint Commission, the organization that accredits most U.S. hospitals, issued a Sentinel Event Alert on diagnostic overshadowing. It named people with disabilities as a group at greater risk, called overshadowing a harm rooted in cognitive bias, and recommended addressing it through staff training and education.
The cartoons and the missed diagnosis come from the same place. One is just more visible than the other.
This is a training problem
I want to be clear about where I think the responsibility sits. One nurse made a bad call, but she was working inside a system that never prepared her to make a better one.
Most healthcare professionals receive very little training in caring for adults with intellectual and developmental disabilities. They receive even less training in communicating with people who are nonspeaking. When training is missing, people fill the gap with whatever they already believe, and those beliefs are often ableist.
The research supports this. In a national survey of 714 practicing U.S. physicians, 82.4 percent said people with significant disability have a worse quality of life than nondisabled people. Only 40.7 percent felt very confident they could provide the same quality of care to patients with disability, and just over half strongly agreed that they welcomed patients with disability into their practices. The authors concluded that disability training should be expanded at every level of medical education. That study surveyed physicians, but the pattern is familiar to anyone who has sat at a bedside across disciplines.
What required training can look like
It doesn’t have to be this way. England offers one example.
In 2016, an 18-year-old autistic young man with a learning disability named Oliver McGowan died after being given antipsychotic medication in hospital, despite he and his family warning staff it could harm him. His parents campaigned for years for better training. In 2022, their work became law. The Health and Care Act now requires every health and social care provider registered with the Care Quality Commission to make sure staff receive learning disability and autism training appropriate to their role.
What stands out to me is how it’s delivered. The Oliver McGowan Mandatory Training is co-designed and co-delivered by people with lived experience of learning disability and autism. Staff don’t just learn about disabled people. They learn from them.
No system is perfect, and a training requirement alone doesn’t change a culture overnight. But it moves disability competence out of the “optional” category. In the U.S., we are still largely relying on families to provide that training at the bedside.
Working in healthcare doesn’t exempt you
I am an occupational therapist. I work in a hospital. I know the language, the systems, and who to ask. None of that stopped this from happening to my brother.
That is something families need to hear. If advocacy is this hard for someone inside the system, it is harder for families who don’t speak the language of healthcare. It is harder still for families who are exhausted, intimidated, or have been dismissed so many times they have stopped pushing back.
It is also something my colleagues need to hear. A credential doesn’t make anyone immune to ableism. I have to watch for these assumptions in my own practice, the same as anyone else.
A few questions I ask myself, and that any clinician can borrow:
Would I make this choice for a nondisabled patient the same age?
Am I speaking to the patient, or about them?
If this patient’s behavior changed, did I look for a medical cause before assuming it was the disability?
Do I know how this person says yes, no, and “that hurts”?
What siblings can do
Introduce the person, not just the diagnosis. Give their age and what they enjoy. Explain how they communicate yes, no, pain, and “stop.” Put it in writing if you can, and ask that it be added to the chart.
Tell them what pain looks like. Many nonspeaking adults show pain through changes in behavior. You likely know your sibling’s signs better than anyone on the unit. Say them out loud and write them down.
Ask whether it could be medical. If staff describe a change as “just behavior,” it is fair to ask: “Have we ruled out pain or a medical cause?” That one question pushes back against diagnostic overshadowing.
Ask the question. “Why was that chosen for him?” is a fair thing to ask about any decision. Often the honest answer is that no one thought about it, and asking makes them think.
Correct the small things. Speaking to an adult in a sing-song voice, talking over them, or choosing children’s media for them are not minor. They show you how the person is being regarded.
Name it calmly and plainly. You don’t need to be polite about ableism, but you do need to be clear. “He is a fifty-year-old man. Please treat him like one.”
Ask for help inside the hospital. Many hospitals have a patient advocate or patient experience office. You don’t have to carry every conversation alone.
What healthcare needs to do
Families shouldn’t have to train staff at the bedside, but right now we often do. Disability competence, including communication with nonspeaking adults and awareness of diagnostic overshadowing, needs to be part of training for every discipline, not an optional elective or a one-hour module. Ideally, people with IDD and their families help teach it. This is part of what I’ll be addressing in my FOTA presentation in November on recognizing and supporting siblings in OT practice.
If you’re a sibling navigating healthcare for your brother or sister, you’re not imagining it, and you’re not overreacting. Subscribe to the email list for more on sibling advocacy, upcoming presentations, and resources as they become available: mailchi.mp/soultosoulyogasrq/ddeziww9zu
References
Iezzoni, L. I., Rao, S. R., Ressalam, J., Bolcic-Jankovic, D., Agaronnik, N. D., Donelan, K., Lagu, T., & Campbell, E. G. (2021). Physicians’ perceptions of people with disability and their health care. Health Affairs, 40(2), 297–306. https://doi.org/10.1377/hlthaff.2020.01452
The Joint Commission. (2022, June 22). Diagnostic overshadowing among groups experiencing health disparities (Sentinel Event Alert, Issue 65). https://www.jointcommission.org/resources/sentinel-event/sentinel-event-alert-newsletters/sentinel-event-alert-65-diagnostic-overshadowing-among-groups-experiencing-health-disparities
Department of Health and Social Care. (2025). Mandatory training on learning disability and autism. GOV.UK. https://www.gov.uk/government/collections/mandatory-training-on-learning-disability-and-autism
