#pretending that this answer isn't extremely late.. sorry

[cripplecharacters]

Hi! I’m writing a story about a lady with Down Syndrome. I was wondering if you knew where I can find any resources about Down Syndrome made by people who actually have it, or any organisations that would be good to follow. Any resources made by people with intellectual disability would be really helpful as well.

I read your post about this and it was really helpful so thank you, I’m going to use it as a starting point for my research.

If you’d like some context about the story she’s literally a lady in the 1920s who’s trying to get control of her family’s estate from her brother. Shes underestimated for her disabilities and for being a women but I’m trying to not focus so much on the discrimination and work more on giving her an interesting mystery to solve with the detective she hired. I’d like it to be a bit lighthearted. Anyway, as she’s a main character I really wanted to make sure I wrote her well. Thanks!

Hi!

There aren't many resources out there unfortunately, but there is a page on the UK Down Syndrome's Association's website where members with DS share their opinions on representation in TV and film! You can read it here. For info on intellectual disability in general the best I can do is link some of my previous posts on it - there's close to nothing that's actually made by us unfortunately, everything that I was able to find is always made by someone who knows a person with ID at best. To be clear, not all of it is bad - I thought this interview (TW for abuse that happens in the movie's plot) about a movie starring actors with DS was pretty good - but it's still a sign that we aren't getting enough #OwnVoices representation. It's slowly changing though!

To learn more about DS I would probably recommend NDSS, it's one of the very few orgs that have people with Down Syndrome as board and team members (should be the bare minimum, but it unfortunately isn't). There's also information on things like preferred language and myths that often show up around Down Syndrome!

I'm not great with history, but in the 1920s she would be a subject to a lot more than just discrimination. Eugenics and institutionalization would definitely be present. Not sure what route you'll take there, but basically all the words around that time that she would be described with are currently considered slurs or pejoratives. The racist term for a person with Down Syndrome was officially used into the 60s, and the ableist one is still used legally in 2024. But if you want to skip past that, I think that's more than fine. You don't always have to aim for 100% historical accuracy, just be aware of the real history.

A detective story sounds very exciting! If you decide to publish it on Tumblr or other online site feel free to send me an ask with a link, I'd love to read it :-) !!

Thank you for the ask!

mod Sasza

I’m just popping in as a history fan for a couple bits of history notes — but again, like Sasza said, you don’t have to be 100% historically accurate if you don’t want to and if you don’t feel it’s necessary.

So, especially in the first half of the 1900s, a large part of disabled children, including children with Down Syndrome, were institutionalized very early in their life. Around this time the push that immorality caused disability was strong, and people were often convinced by doctors and professionals that the children’s needs would always be too much for them. Eugenicism was sort of reaching a peak around this time, as well—I would say it was at its most intense in the period of 1900-1940s.

Not all parents institutionalized their children, though. There was pressure to do so, but that doesn’t mean everyone fell victim to it. There wasn’t really any official support for parents who did this, and there weren’t official organizations for Down Syndrome. From my research, the current large DS organizations seem to have popped up in the 60s.

The term ‘Down Syndrome’ wasn’t in popular use until the 70s, and it wasn’t known that it’s caused by an extra chromosome until 1959.

Life expectancy in 1900-1920 for people born with Down Syndrome was 9 years old. Some of this could absolutely have been due to conditions in institutions, but likely even more relevant is that about 50% of people with DS are born with heart defects (also known as congenital heart disease) that can be fatal if not treated with surgery. Heart surgery wasn’t really feasible until the late 30s and early 40s. Another risk factor is a higher risk for infection, which isn’t easy to manage in a world that doesn’t yet have antibiotics.

I actually wanted to find pictures of adults with Down Syndrome pre-1940ish, though, to see real tangible evidence of adults being part of a community. First I found just one picture of a baby in 1925 on this Minnesota government website. But then I found a collection someone made of photos of both children and young adults, but they are not specifically dated. The first baby picture is from the 30s according to the poster!

Judging by the clothes I see people wearing in these photos, photo #4 (man with Down Syndrome in a suit next to a woman) seems to be from the 20s and photo #13 (young woman with Down Syndrome and very long hair) seems to be from about the 1910s. #18 (large family with a lot of sons, including one boy with Down Syndrome) could be from the 30s. Those three are the oldest people with DS in the photos, and they seem like young adults. A lot of these pictures show a community and aren’t just isolated kids, which I find nice.

It’s hard to find specific historical record of people with Down Syndrome from that period of time, but I wanted to show photos of real people in their communities to show, hey look! They were there, too!

Either way, I love detective stories and historical fiction and I’m glad you’re writing a story and that you care about your character’s portrayal but I totally know the feeling of that tricky balance between historical accuracy and modern acknowledgement that we should have been doing better.

— Mod Sparrow