(Edit: forgotten in first edition) A cookbook to store the recipes my family likes to cook so I can eventually break up with Pinterest: https://github.com/vtbassmatt/Cookbook

A data extraction pipeline and search engine for a new card game called Mood Swings: https://moodswingsdata.github.io and https://moodswingsdata.github.io/feelings.

An app to let my friends and me build a Magic: the Gathering cube iteratively together: https://github.com/vtbassmatt/popcorn-cube

A custom wiki engine for a family of podcasts I enjoy: https://github.com/vtbassmatt/totalus-wikium

A systemd log viewer for the web: https://github.com/vtbassmatt/djournal

I sadly haven’t convinced my MtG playgroup (or family or other friends) to try it with me.

If the context was an Azure booth, I’m still mildly surprised (they’ve long been invested in beyond-Windows) but not shocked.

(Edit: I forgot about the Actions stack. Some of that was on Windows. I was pretty far removed from that world and much closer to the classic Ruby monolith side.)

I've never tried to pay with Apple Pay on ticketmaster.com, but I assume I could do that as well.

I don’t understand the distinction you’re drawing between “charity” and “nonprofit”. iNaturalist is a 501c3, so it’s a charity [1]. One of my partner’s previous 501c3 employers produced an app to aid with their mission.

Let me reframe your first bullet to reflect my lived experience (both in the nonprofit world and building software at a for-profit):

> Decisions at a charity feeding the poor are high-stakes and often controversial compared with decisions for a product focused app organization. If people are making a lot of decisions bottom-up at the charity, the scarce budget won’t stretch to cover the needs of the mission. In a product-focused organization, decisions are much lower stakes. Through the magic of version control, A/B testing, and vendor app stores, you rarely need to commit deeply to decisions, so the individual developer can make the initial call: will we use this app icon design or that one? Will we have one app for professionals and one for laypeople or a unified app? Will we use SVM or a neural network? Ship, learn, iterate.

My for-profit employer explicitly hires for (or at least used to) “passion” and intrinsic motivation. And there are several corporations I’m not willing to work for despite their reputation for high compensation. I think it’s pretty tenuous to connect org structure with motivation so directly and concretely.

The third bullet is uninformed. 501c3s answer to the people they derive funding from, their customers/clients/served population, their board, and the government (tax authority) whether they’re putting spaghetti on plates or pixels on screens. The IRS has a pretty readable intro to the requirements [2].

This kind of first-principles reasoning from vibes about what it must be like is seductive but often misleading. I encourage everyone I can to serve on a nonprofit board. The organizations can usually benefit from the perspective and different type of thinking that computer people bring, and it’ll open your eyes to new perspectives about your own work and life!

[1] https://www.charitynavigator.org/ein/921296468

[2] https://www.irs.gov/charities-non-profits/charitable-organiz...

Also: did they tell you they were miserable or felt stuck in Groundhog Day? If not, then it’s not a safe assumption. AFAIK many caretakers and family members report satisfaction with their lives despite the added complications. (Maybe your neighbors really were miserable, and if so, just know it’s not the norm anymore.)

The early genetic testing for Down syndrome is pretty accurate now. If it’s still a major worry for you about having kids, get the testing done early enough to terminate. I strongly hope that no one terminates out of ignorance about the realities - both positive and negative - of Down syndrome, but have no problem at all with informed choices.

People with Down syndrome aren’t “downs” or “downs patients”, though. It’s easy to dismiss this as language policing or, as another thread hinted at, performative. But the words we use and how we view the world are part of a feedback loop on each other. Synecdoche-izing people as merely a medical diagnosis colors whether society treats them as full members or not. And unlike, say, the Deaf or autism communities, it’s not currently a subculture or something that many people with Down syndrome identify as.

As an internet stranger, I’m asking folks to consider using “person with DS” instead of “DS patient/person/etc”.

Heartily agree! My question was a reaction to the last line in the parent comment:

> If a child can't achieve independence and a life of their own, why let all parties suffer through that ordeal?

I’m sorry that I didn’t make that as clear as I could have.

* * *

I’ve seen the negativity on Reddit and, now, here. Some of that is based on historical reality: the standards for medical care and early intervention have dramatically improved outcomes for people with DS even just in my lifetime. It turns out that if you don’t believe a child is capable of, say, reading, then you don’t bother teaching them to read. This becomes a self-fulfilling diagnosis. And not too long ago, many kids with DS had inner ear damage from undetected ear infections, leading to hearing loss and difficulty communicating. As we learn more about what’s possible and what needs monitoring in kids with DS, long-term outcomes get better and better.

This recent (~last 20-40 years) improvement means there’s still a visible cohort of people who didn’t receive that level of care and probably are less independent. But I’d also suggest that there’s sample bias in anecdotes on Reddit. Like with product reviews: the vast majority in the middle don’t bother to post, and negative experiences get more emotional traction than positive ones.

The range of associated medical conditions is long and scary. But no individual gets all, or even many, of those conditions. And a lot of the scariest/most complicated stuff is correctable early post-natal (heart surgeries are common) or end of life (early appearance of dementia is unfortunately still the likely outcome for most people with DS). Medicine continues to make progress, and I think outcomes will continue to dramatically improve.

> Auto-eponyms may use either the possessive or non-possessive form, with the preference to use the non-possessive form for a disease named for a physician or health care professional who first described it and the possessive form in cases of a disease named for a patient (commonly, but not always, the first patient) in whom the particular disease was identified.

https://en.wikipedia.org/wiki/List_of_eponymous_diseases#Aut...

This is sourced by a link to the American Association of Medical Transcriptionists, which is not a body I’d heard of but I guess have some skin in the game when it comes to the intersection of medicine and grammar. https://www.mtstars.com/word-For-eponyms-AAMT-advocates-drop...

Please cite your sources and show your work.

My child with Down syndrome is a giant pain in my ass, I worry about him constantly, and there are days where I wonder “why me?”

The same is 100% true about my typically-developing daughter.

Maybe you’re right and this situation was terrible for everyone. Is this arrangement required? Is it the best we can do?

I don’t think most people would choose to live a life with many common afflictions. I certainly wish my lower back didn’t hurt all the time. That doesn’t invalidate my existence, and neither does my son’s Down syndrome invalidate his.

What are the ethics (and societal obligation) of supporting someone who’s had a severe stroke? Or how about a traumatic brain injury from a car accident? Oxygen deprivation from near drowning? If these are different from a congenital condition like DS, why?