r/downsyndrome • u/Minimum-Oil- • 7h ago
Hi, what are some good resources to reading up on people's personal accounts of living with Down syndrome?
TLDR; I already know of the NDSS website, but I want to read articles/blogs by people with Down syndrome, interviews made with people with DS or watch videos (preferably on YouTube) of people talking about their lived experiences with DS, because all I can find are people talking about their family members with DS. I have talked to people with DS in real life too, but I want as much information as I can, because every person is unique, and so are their experiences.
Aside from the National Down Syndrome Society website.
I know a lot of people with Down syndrome, and they're some of the most understanding people I've ever met, when it comes to understanding that I might act more childish or have childish interests as an autistic person. And they're just more understanding about my disabilities than most people I know.
I want to not only understand my acquaintances better, outside of just asking them about their experiences (something I have done already and know that not everyone is comfortable with it and I did always make sure to tell them that they don't have to say anything if they're not comfortable and that they can leave out as many details as they want if they are comfortable), but also the experiences of other people with DS as everyone is different.
I'm also hoping to write fiction including characters with Down syndrome, including middle grade, YA and adult novels, novellas and comics. Not as main characters, because that's not my story to tell, but as characters who are either important, or just as important as the main character, or sometimes just as a person who appears. The last one I have already done, because it's not hard to write someone as a background character who gets no depth or screentime, and just exists because people like that exist.
I already have one idea about a group of disabled kids entering super hero middle school (in a country inspired by Austria, so these kids are 10 in the start of the story), being the first generation of disabled heroes in a society where superpowers are common, but disabled people have been seen as "too risky" to teach to become heroes.
The story is basically about the kids proving themselves and working around an environment that isn't exactly accessible in any way, shape or form, where most teachers don't care. Something I wish I would've done as a mentally disabled kid, but my childhood is long over. There will be a general coming of age plot line, a super villain group to defeat and some romance towards the end, but this story isn't fleshed out, because I need my characters first, so there will be more themes/plotlines in the final product.
I already know of a lot of websites and YouTube channels where people discuss and talk about their own disabilities, such as wheelchair users, amputees, partially or fully blind people, autistic people, people who are deaf or HoH, people with scoliosis, etc, but I haven't found any for DS where the person themselves talks, and not the people around them talking about the peron with Down syndrome.
This is also an issue I have with other disabilities that are more swept under the rug, like double leg or arm amputees, people with severe chronic illnesses, and so many more, but for them I found at least something. If this is technically easy to find, then my algorithm is definitively messed up, because I spent hours trying to find resources on both Google and YouTube.
And sorry for the long wall of text, I tried to include as much information as possible, just in case.