Infantilization and Situational Awareness in Disability Care

 This topic only scratches the surface of something that affects the disability community in a specific way. Infantilization can be seen as a form of discrimination, but some people may view it as uninformed caregiving. Either way, if you're a paid caregiver, it’s crucial to be aware of how infantilization can cause frustration, particularly when working with medium to low support needs clients. Frustration often leads to what the industry calls “difficult and challenging behaviors.” But these behaviors aren’t random—they have causes, and one significant cause is frustration.

Everything I’ve read about managing challenging behaviors in the disability sector emphasizes that it’s not about the caregiver. The way a caregiver reacts can make a situation better or worse. This is where situational awareness becomes critical. Understanding the root causes of frustration helps identify triggers—real triggers, not the casual "I was triggered at work today" kind, but genuine clinical triggers. For example, not getting their way might lead to yelling, being told what to do might cause anxiety, or not knowing which support worker is on next could create panic, especially if it’s someone they don’t like.

My Experience with Infantilization

I’ve experienced infantilization in small ways myself. It’s frustrating when people assume that, because I need support, I don’t know what’s best for me. This is why informed advocates promote the "with, not for" methodology. Caregivers should do things with clients, not for them. (And on a side note, I despise the word "participant." I’m not participating in my own life—I’m living it.)

Infantilization can happen in different ways. Sometimes, it’s done out of compassion, like when the person being cared for has the mental age of a child. In such cases, treating them accordingly is appropriate. However, for clients with higher cognitive functioning, this approach does more harm than good. This is why I advocate for qualifications in caregiving. Lived experience is important, but it doesn’t cover everything. Qualifications protect both caregivers and clients, ensuring that caregivers know how to assist with dignity and respect.

Qualifications Matter

Being an unpaid caregiver is different from being a paid one. Formal qualifications teach you the basics of caregiving—lifting techniques, personal care, and how to maintain someone else’s daily routine. This knowledge ensures that clients with low to medium support needs don’t feel frustrated. For instance, instead of saying, "You can’t have fish and chips for dinner every night," caregivers can explain why, so the person understands. This respect fosters trust and reduces frustration.

Infantilization in Support Organizations

Infantilization happens in more subtle ways too. Some support organizations dictate who is coming to provide care, and there may not be flexible cancellation policies. This creates a sense of control over the client’s life, removing their autonomy. It also shows up in risk-averse policies that don’t allow clients to work, live alone, or study, all of which are possible for many with the right accommodations.

I live in what’s called a SIL house (Supported Independent Living). Because of my level of functioning, I have more freedom and autonomy than my housemates. I can record videos for my YouTube channel as long as I respect others’ privacy. But even I’ve felt frustration, wondering why I don’t receive the same level of attention. It took me time to realize that I needed to ask for the support I required and that my level of independence was higher than my housemates.

Public Perceptions and the Evolution of Disability Support

The general public is now more exposed to people with disabilities, thanks to advances in medical science and advocacy work around the world. The push for community-based support, rather than institutionalization, has increased awareness. Federally funded programs like the NDIS in Australia and the Personal Mobility Payment in the UK are making a difference, but these programs shouldn’t be seen as the final solution. They level the playing field but removing every challenge won’t help people grow.

Raising the Bar for Low to Medium Support Needs

We should be encouraging education, work, and training, even if health conditions make these goals more challenging. If someone is struggling to stick to an exercise program, they might be motivated by the possibility of being well enough to find a job or volunteer. I believe there’s a social contract here—if you receive income support or care through a government program, there’s an expectation that you’ll contribute to society in some way, even if that means volunteering or developing life skills.

The NDIS and Accountability

The Australian government doesn’t hate disabled people, as some might believe. The disability sector generates significant tax revenue. What the government dislikes is waste, which is why we’re seeing NDIS cutbacks and tighter definitions of what counts as disability-related support. For example, non-modified sports equipment is now seen as an everyday living expense, not something covered by the NDIS. I think some advocates on platforms like TikTok forget that the NDIS was never meant to cover everything. If you can walk into a sports store and buy it, it’s an everyday expense. But if it needs modification, then it becomes a disability-related support.

The Social Contract and Responsibility

You may be wondering why I’m talking about a social contract in a discussion about disability. The idea is that, if you receive support, it’s generally accepted that you’ll give back in some way—whether that’s through volunteering, attending a day center, studying, or developing life skills. This isn’t about setting someone up for failure, but rather about raising expectations. If we raise the bar for people with low to medium support needs and support them in education, work, or business, the potential is immense.

DEI and Merit-Based Inclusion

I’m not advocating for a massive DEI (Diversity, Equity, Inclusion) industry like in the U.S. To me, that’s become a grift. What I’m talking about is qualified educators and advocates who understand disability from different perspectives—whether they’re mental health professionals, support workers, or people with lived experience. We need good-faith discussions that prioritize ability, merit-based hiring, and reasonable adjustments.

There are no easy answers, but these are the conversations we need to be having.