5/5/26 - Bad ideas and bad representation

Good afternoon!

If you are hoping to be cheered up by today's links, this may not be the day for you. The first article makes me angry. The other two just depress me. On the other hand, sometimes negative things clearly described and explained can be uplifting in their own way.

Don't forget, the poll closes on Friday. If you haven't taken it yet, you still can until then.

Now on to the links. The first one is a doozy. It was for me anyway.

Couple Plan 400-Acre Neighborhood For Adults With Disabilities

Michael Cuglietta, Orlando Sentinel / Disability Scoop - April 30, 2026

"'It’s a twenty-four seven situation. You have to do everything for them. Their cognitive skills are like babies,' said Chip Tolman, whose children, ages 24 and 28, have cerebral palsy and mental delays ... 'It’s a community like Baldwin Park and not anything remotely close to an institution,' Tim Kuck said. 'It’s a place that will have residents but also be for the Orlando community. We hope to make it very inviting.'"

There are a lot of things in disability discourse that I disagree with. But few of them change my blood pressure. This article made me swear out loud. If I had a dog or a cat, they would have hidden under the couch. Back when I first started this newsletter, I mentioned that sometimes I might share links to disability articles that I don't like. This is one of those times.

I admit I am emotionally repulsed by this kind of housing or "care" proposal for disabled people that involves purpose-built, closely-managed "residences," or "neighborhoods." There are strong practical and human rights reasons not to waste scarce care and assistance money in these idealized "communities." They almost always end up being little more than tarted-up institutions, possibly with better decor, nicer architecture, and flowered sidewalks and gazebos instead of dirty linoleum floors and dingy rec rooms. The problem with institutions for disabled people isn't just how they look and smell. It's the institutional model itself that inevitably leads to under-funded authoritarian hellscapes. Or, at best, they slowly stagnate into segregated, stultifying, dead-end warehouses just pleasant and safe enough to keep families reassured, and disabled residents just happy enough not to be severely depressed. These are all reasons to oppose this sort of thing. My problem is that aside from all that, they give me the creeps.

The problem with this article isn't that it was written and published at all. It's that there is almost no evidence that anyone asked any critical questions. If they did, the only place it shows up is the quote above. And that reads exactly like a prepared answer to an anticipated question – an obvious question really – that didn't even have to be asked. Despite appearing in a publication that purports to be about disability issues, the piece reads like any hometown newspaper's sunny, uncritical review of the latest disability service brainstorm by a (possibly) well-meaning, almost always rich family. And it's most likely a family that knows virtually nothing, or cares nothing, about the decades-long effort to fund true community integration and individual, personal support for disabled people in their own homes and communities. To be fair, maybe they do know, and maybe they don't. The point is they are almost never asked. Maybe I'm naive, but I would expect better from a dedicated disability publication that seems to want to be seen as a neutral source of disability news.

I did mention this makes me angry?

Who gets to speak for mothers of autistic children?

Sara Luterman, The 19th - April 30, 2026

"The public members themselves no longer represent the largest and most mainstream autism organizations like Autism Speaks or the Autism Society, organizations spearheaded by parents, particularly mothers, that have been representing families of autistic children for decades. Public members now represent a number of different organizations dedicated to alternative treatments for autism and causes unsupported by mainstream scientific research, brought together under Robert F. Kennedy Jr.’s Make America Healthy Again, or MAHA, banner and energized by Kennedy’s longtime support for what most experts consider to be fringe beliefs about autism and general health."

This reconstituted autism panel isn't just less representative in terms of disability, race, and other kinds of background. It's also less representative of the most common and scientifically sound views about autism itself. Of course, the new people on the panel probably feel that their presence makes it more representative of their own alternative views about autism, which they will feel have until now been shut out of the autism debates the panel itself is designed to have. But having fair representation for some controversial ideas and unproven treatments isn't the same thing taking over the committee completely. This isn't integration of diverse views. This is a coup d’état.

A Denver music icon saw herself on a bus. She wasn’t happy

Kiara DeMare, Denverite - April 29, 2026

"Kalyn Heffernan didn’t know her picture was on the side of a bus. She only found out when a friend had sent her pictures on Monday ... 'I was just instantly so pissed off,' Heffernan said. She had no idea that the Regional Transportation District was using a portrait of her to promote its services for riders with disabilities, she said."

This is not something that happens to most disabled people. But it's something that could happen to any of us. And similar things do happen to many of us quite often. It's the use of our image or example, without our consent or meaningful input, for a purpose we might have agreed with, if we had been asked. Representation is really valuable, especially for disability communities who always have to fight the worst kinds of personal and cultural invisibility. But each of us also needs privacy and agency. We don't like being "volunteered" for things any more than anyone else.

Disability Thinking Weekday is a Monday-Friday newsletter with links and commentary on disability-related articles and other content. You can help promote Disability Thinking Weekday by forwarding it by email or posting on your social media. You can also comment by sending me an email at: apulrang@icloud.com. Collected comments are shared on the first of each month. A free subscription sends a newsletter to your email each weekday. Benefits of paid subscription include:

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