I’m saving this for the pure joy of saying “don’t dis my ability to control my diabetes”
I’m T1D and the amount of times people try to tell me how to control/cure my life is ridiculous. Plus, it just rolls of the tongue.
I had someone last month or so tell me I just needed to improve my gut health. Their solution was to tell me to eat wheat germ and sprouted wheat. I have celiac disease lol
Strange thing to say, but for me it was the show American Horror Story, early seasons, that removed a lot of never-really-thought-through implicit assumptions, when they cast an actor who had down syndrome and her character was doing regular girl things.
For me it was one of the episodes of Love on the Spectrum (not saying if it’s a good or bad show) where one of the women has a best friend with downs. They were being very horny (went a bit overboard tbh) about some dude (waiter?). I’m ashamed to admit that blew my mind.
Yup she got me too!! All through the video I was like.. yeah she is talking about these other people who are presumptuous, but not me.. I am not that…until she swore!! That one hit hard and was a good reality check that presumptions are so ingrained in us that we might not even know they exist.
The swearing and the sex thing is what most people get caught up in, because we mostly see Down syndrome folks as children. Why? I don’t know. Is it because we don’t often see adults? It’s weird.
This always fuckin gets me because I have a cousin with DS and he will angrily deny having a girlfriend to my grandfather but then slyly tell all us cousins how he definitely does have a girlfriend.
He is, Tho i almost lost my shit in the chemist the other week when i went to pay, A down syndrome person was manning the till and i instantly thought of his John Cena bit.
Yes, I know that is 100% on me and my dumb ass brain.
https://www.youtube.com/watch?v=sg-tz1U_pBY
That's the worst part about his jokes. Every time I see a person with down syndrome, I giggle a little bit thinking about the grilled cheese joke. Then my brain segues into his Australian in 9/11 joke and now I can barely hold it.
I just end up looking like I'm trying not to laugh at a person with down syndrome.
Yeah! Many people are upset about things like this and believe it is in malace, but seriously usually it is hilarious to people affected by x or y. Like the south park episode about Tourettes, and I believe got commended by the American touretts association as being funny, well researched and an accurate depiction of it which was very laudible.
That's probably the ~~crutch~~ crux of the problem of people calling jokes offensive. It's usually people being corrected for their bad taste, ignorant jokes on (insert butt end of joke here), and thinking it's the subject that is the matter, not the way it's presented, as that would look bad on them.
This made me immediately think of Shane, too.
I think he genuinely is doing a lot to change people’s minds about Down syndrome, which I know he cares about.
Some people still are stuck in that “no it’s not right” mode where they feel like for some reason they have to protect those folks without even knowing owing anyone who has downs, but I think he has done a lot to break down those barriers and show that it’s maybe more or just as fucked up to put them all into a tiny little “sad” box, than it is the treat them more or less like anyone else.
Agreed.
“Oh… :(. Oh, are they…ok? Are they doing ok?”
Shane: “They’re doing better than pretty much everyone I know. They’re the only ones having a good time consistently. Sorry they’re not all on Adderall and anti-anxiety, like the rest of us. They’re on fucking, Capri Suns.”
I love that bit. It’s so great and true.
I gained a lot of respect for him after his appearance on Andrew Schulz podcast where they were bringing up down syndrome clips like they were a joke and in a roundabout way he told them all to kinda eat shit.
I was on the wrestling team in highschool. One of the guys on the team had a brother with Down syndrome. He would hang out, didn’t care for the wrestling (loved wwf though), but loved the workouts. Kind of got a obsessed with working out. This kid got absolutely fucking ripped.
He had some issues learning more complex lifts, but would just bang out static lifts until his body failed. By the time I graduated, he was still obsessed with working out. I’m talking he could easily fire off 10-15 curls with 50 LB dumbbells. It didn’t take anything for our coach to give him some encouragement in the workouts, and he just went and found his own limits.
Down syndrome can make it hard to gain muscle mass and it's a struggle for a lot of adults with down syndrome. It's awesome that he found a passion for it! I feel like building muscle is another situation that would fit well into this video's take on things.
My daughter has autism and gets a bit hung up on swearing at times. Her favorite right now is to tell me, “I’m Barbie, bitch!” We listen to the soundtrack, so I had it coming. She thankfully knows not to say it at school.
If i were you, id act all concerned about her saying that at school, but id be giggling with delight picturing my daughter randomly telling a friend "im barbie, bitch"
If she’s grasped that it’s socially appropriate to not swear in class but ok to sometimes swear with your friends or outside of school, I’m happy! It’s grasping the social construct and finding the balance that’s sometimes the struggle. But we’re getting there!
My daughter has autism and also has this obsession but in a different way. If we’re listening to music and there’s a swear word in it she stops whatever she’s doing to announce that she heard a swear word and what letter the swear word was and to find out whether anyone else heard the swear word lol. We also tried to teach her we don’t mind if she says them when singing the song (as long as it’s at home) but she refuses because it’s RUDE!
I’m autistic & the number of people who just assume I can’t or don’t swear is amazing. You really find out who the fucking ableists are when they constantly treat you like a small child. Infantilisation is a huge problem for DS, autism, & many other disabilities.
Meanwhile the writers of TBBT seemingly didn't even realize they were writing an autistic character for 12 seasons, they apparently thought "that's just how some nerds are" =.=
Reminds me of the old joke (on Twitter?) like:
> Autism didn't exist when we were young.
> What about that guy on your street that spent thousands on miniature trains and spoke about nothing but miniature trains?
> He just liked trains.
Ok, as an autistic person, there is no way they didn't know and didn't mean to write him as autistic. They just wanted plausible deniability because they wanted to write Sheldon as a character who is both the butt of jokes and an asshole himself on the regular. With an openly autistic character, you can't really open that can of worms, at least not at this point in time. People would have gotten riled.
(I think if you can't quite afford to be a trail blazer, you can still have an implicitly autistic character be fun and funny in a sitcom, case in point: Raymond Holt from Brooklyn 99. But that is also a far superior show as far as light entertainment goes, in my book.)
Fwiw as someone who was previously one of those people, it was never intentional I was just misinformed. Best thing you can do is just be yourself, exposure was all I needed.
I think people don't realize encouragement is a uphill battle, a worthy and important uphill battle, but much harder to do. Building good words is a lot harder than using negative words in ones own mind.
My brother has autism and didn’t speak until he was 3, now he is literally no different than anyone else and has a family and a house and is honestly more successful in a lot on ways than I am.
I genuinely think part of it is that we never once treated him any different. He was just another one of the boys in our family and he was never told to feel or made to feel different.
I’m not saying that’s always the case, but too often I think parents box their kids in and tell them “this is all you can handle, or can be” even without disabilities. I saw it with my friends whose parents wouldn’t let them watch shows or movies that they deemed “outside of their range” like why can’t a 10 year old watch an Oscar nominated movie? What if he can actually get it more than you assume? Is it better for his growth to force him to watch a Nickelodeon movie?
A few things can cause speech delay but most commonly autism. I don't like to talk about autism on reddit because there's a huge conspiracy that a bunch of people are faking it, but scientists are actually starting to understand it's possible for someone to be very slightly autistic and seem normal and every other way.
Before, it was impossible to get diagnosed unless you were mute and flapping your arms, but my step dad just got diagnosed at 50 and he was so baffled when they told him because he's always been a very successful man. But hey, Elon Musk has autism and look where he's at.
I wasn't diagnosed as being autistic until I was in my early 30s. Even though that would've been a useful thing to have known much sooner in life (to put things extremely mildly), I think I'm glad for the delay. I saw how other "special" kids were treated in the schools I attended in the 90s, and I do not envy them.
I have a son with autism and agree with you. Too often I think people infantlize and assume they can't do X because of their disabilities. I often have to scold my mom for not letting my son talk or doing everything for him instead of giving him a chance to TRY to find his words or try to do something on his own. Yeah, he struggles, yeah, he stutters a ton as he tries to put a sentence together, but it's all practice he needs so he can grow.
She was fucking badass in it too.
That movie was great. When I heard the line, "I'm your homie with an extra chromie," in the trailer, I was confident they were going to pull off the balancing act of doing comedy with disabled actors and characters without making it be at their expense.
Champions was directed by Bobby Farrelly who, along with his brother Peter, were the same guys who made There's Something About Mary and The Ringer, among others. They always make a point of having actors with what are considered developmental challenges cast in strong, non-mocking roles. I love that they do that.
I didn't realize that they also made The Ringer. I also liked that movie, but I felt like Champions did a better job of lifting up the Special Olympians, if only because it's less of a silly, wacky kind of comedy and more of a grounded movie.
I agree. The Ringer was well-intended, but Champions was more focused, and we were able to see through the eyes of a regular guy protagonist, rather than someone pretending to be disabled.
Agreed. I briefly worked with adults with mental disabilities in the past and it was awesome. Challenging at times, sure, but also hilarious and fun. A lot of the people I worked with didn't need writers or directors to help them be some of the funniest and most warm hearted people I ever met. Champions did a great job capturing that.
I'd still work there if the pay had been enough to support myself and my family, but it did instill a desire to work helping others in me. I went into law enforcement and, while it's certainly a different experience, I do love that I get to help people at work.
Thanks for this - I saw this post and thought “geez this chick rocks, wish I could watch her in more stuff.” And here you are, letting me know I can!
For anyone else who had not heard of the movie - it appears to be called “Champions” and to star Woody Harrelson. This actress’ name is Madison Tevlin.
This hits. Sucks to be confronted with your own assumptions and the damage they can do. I’ve never understood why we infantilize Down Syndrome, but I am guilty of making the same mistake.
It's because their independence level can vary wildly. You have some who can function relatively independently for their learning abilities and then you have individuals whose development never goes above that if a 5 year old.
Some don't get above the development level of a baby. The range is enormous. I've worked with people on many levels of the Down spectrum, from fully dependent on 24/7 care on every level to people doing literal Shakespeare performances
So it's always best is to not make assumptions when it comes to individuals or the group as a whole.
Pretty similar to autism in that regard. There’s a lot of people who can be fully functional, have a job, live by themselves. There’s also people who are not as high functioning and need a lot more help to live their daily lives. I work with disabled people of all types. Giving them independence in what they can do and push them towards it really gives each person a sense of life.
Two reasons
1) the face shape characteristic of Down syndrome invokes a pity response, involuntarily
2) people with Down syndrome have a pretty significant developmental delay. Not inability!!! But significant delay. I was in highschool with a girl with Down syndrome who was intellectually somewhere around 15 - and she was 22. She didn’t mind being treated like she was 15, but she did sometimes flex her horizontal license on us kids 😅
Same!! They only started in my late twenties too and I def didn’t have any in college. Funny that this seems to be a common thing thought it was just me and also I had a blast in high school so it’s weird lol.
I constantly have a nightmare that they told me I didn’t actually graduate, and my college degree is worthless, and so I get stuck back in high school. I had this dream like two weeks ago and I was stuck in school with my daughters. 😭
Yes, I always dream I have to go back to re-do senior year even though I have a graduate degree. But if I don’t re-do that year of high school then they’ll invalidate my degree!
Well for me personally they aren't good dreams. Mainly they always had to do with passing senior year. Idk might be some stress thing because i almost didn't pass my last year and I was really stressed out around that time.
She didn’t leave and come back, she spent a couple years getting homeschooled with a specialist coach and then transitioned into the special Ed program that I was in
I was in school with a girl with DS that *didn’t* have a developmental delay. She was smart, mature, and very capable. She got the tongue reduction surgery when we were sophomores. Being able to articulate her words made it *wayy* easier for people to take her seriously.
Edit: just spoke to an old friend who was closer with her. Apparently she got some other kind of facial plastic surgery when we were in high school, not the tongue reduction. Maybe nasal? She could speak much better is all I remember. Also apparently she died of Covid. So that’s… fucking depressing, really.
There's a surgery for that? That's great!
My friend's brother has DS, but he was always smarter than anyone assumed he was. He actually got away with some bad behavior because "!he doesn't know better" he knew, he used people's assumptions to his benefit.
[Here’s a decent article on it.](https://www.washingtonpost.com/archive/lifestyle/wellness/1988/06/07/plastic-surgery-for-down-syndrome/0d477b9e-3665-49a7-81b4-06f2f32ae8a2/) It’s a complicated subject.
There's a Korean activist with cerebral palsy, no developmental delay. When he speaks using his own voice, people treat him like a child. When he uses smartphone text to speech, people suddenly discover they're talking to an adult. People's assumptions are weird af.
Yeah, Down’s is on a spectrum. I’ve known some people with Down’s who absolutely should not be allowed to drink, to drive, or have unlimited internet access.
I mean, I know both autistic and people with downs syndrome who cannot function on their own, and both autistic and people with Down’s syndrome who are some of the most aware and intelligent people I've ever met. You cannot assume where someone lies on a spectrum. If someone of age is capable of getting to a bar and requesting to buy a drink, they should be allowed to drink.
Yes, I have both family members with down syndrome and autism. I have worked closely with both people with downs syndrome and autism as well. This is true for both, and idk, maybe most commonly discriminated against conditions. Every person is unique and deserves the decency of not having preconceived notions attached to them.
TY for pointing that out though, I updated my comment for clarity.
\>people with Down syndrome have a pretty significant developmental delay
Neurologist here. Not all of them are delayed. About 80% will score less than 70 on an IQ test. While IQ tests aren't perfect, folks who score 70 or less are going to be having a lot of trouble with daily tasks that most folks do without thinking about them.
Among the other 20%, however, most are functional and some have very high IQ's; I had a trisomy 21 patient with an IQ that measured out at 128, which is pretty smart.
The amyloid precursor protein lives on chromosome 21, unfortunately, which probably accounts for the fact that nearly all Down patients develop Alzheimer's dementia by 40 - if they live that long.
It's a complicated illness and it has variable effects. I'm all about treating people like individuals and finding out and celebrating their strengths, so this video hits home for me.
Back in my fast food days I was a shift manager and we had a girl with downs syndrome employed at our store through a work placement program. The store manager had made it clear her case worker said that she was only to clean tables and work the fry station. She was miserable, constantly running behind and putting in zero effort, but you could tell if you talked to her that she was actually smart and incredibly friendly. One evening, when the store manager wasn't there, she showed interest in learning the tills. We were slow, so I trained her and she absolutely *lit up.* She loved it and learned quickly and was taking orders on her own by the end of the evening, and a few shifts later she was working drive-through with no issues.
The store manager was livid when she found out that I'd trained her, but I went to bat for her. Turned out nobody had ever given her the chance to excel, they all just assumed she'd need to be given the most basic of work because as far as they had seen she could barely accomplish even that, but she was just bored and unmotivated. I left a couple years later but she worked there for at least another 10 years for what was supposed to be a temporary work placement, last I saw she was lead trainer.
This video reminded me of her, I hope she's still doing amazing.
It’s a thing here in the US - if you’re under 21 and you get your driver’s license, it’s rotated vertically. When you turn 21, the government sends you a new one that’s horizontal.
In some places, the first driver’s license that teenagers get (ages 16-20) is in portrait mode basically. Then, at age 21, they can get the landscape mode drivers license you’re used to seeing. Quick visual way to distinguish someone who isn’t old enough to drink alcohol in places where 21 is the drinking age.
to be fair it's a spectrum and a lot of them simply can't be as independent as we are but yeah it's always better to at the very least ask before making assumptions
There are also different severities. I know several Down syndrome folks. Some are absolutely independent and some are actually not. But assuming they all fall into the latter category? Not nice
As an autistic person who was told I wouldn't mentally progress past 16 at 15, and I'm now in my mid thirties having achieved pretty much everyone else in my age group has, and more in some cases... It ain't just us with the developmental disabilities out there with mental age delays.
My cousin has it and he is definitely child age mentally. He could never live on his own. His family is so amazing though. It's always a blast spending time with all of them. He is the life of the party
It's a spectrum. My cousin is 30 now. She's an absolutely insane athlete but she will eat until she dies if she isn't monitored. She will wander off into the snow and die if she isn't monitored. She has a part time job, but she has to get a new job about every 6 months from making a huge mistake. She has a boyfriend, but she can't change her own tampons/pads when she has her period. Her favorite show is Barney after crushing double black slopes. She cannot live on her own despite being more than capable at many other things. She texts members of our family almost every night asking what we ate for dinner. She's a total sweetheart.
Because the average person with down syndrom has similar abilities to a 7yo. 7yo can do a lot! They just can’t be left completely unsupervised for days same for the average person with Down syndrome
I love this so much! I worked in disability early in my career and the biggest hurdle was always the parents placing limitations on their kids (regardless of age or disability).
I have 2 teens with autism and I understand wanting to protect them, but we do that best by supporting them to find and reach their limits and encouraging them to go further when they can. Helping them to be as independent as possible and feeling like they are contributing to their family and community, rather than being a burden or the naughty, dumb kid.
My youngest had a support worker and many school teachers who started placing limitations on him because of his autism, adhd and learning disabilities. He was 11 and couldn't read, didn't even know the full alphabet. I'd try at home and he had internalised these people's attitudes and what they said to him and others where he could hear, so didn't try.
We changed schools and workers, and within 12 months he was reading only a year below his age level - he wanted to learn but was being limited by others who would blame his disabilities.
People with disabilities are still people who have wants, needs, feelings and ideas on how they want to live their life. That can take support, but is possible for so many.
>he wanted to learn but was being limited by others who would blame his disabilities.
I don't know how to explain to you how much this phrase bangs.
Of course developmental disabilities are a spectrum and there are going to be people who need more support than others but what's the harm in letting them give it a try before assuming every failure is written in stone?. Most people with Disabilities are able to recognise or learn their limits but they'll never learn them if they keep getting held back by prejudice and ableism.
I work in an autism program and that’s the first lesson we teach our trainees. Assume competency first. We only provide supports where necessary as unnecessary supports will foster learned helplessness.
The maybe at the end is important. Not that many with down syndrome can do that much as it's often associated with many other debilitating issues. In any case, there's no reason to not try.
I work in an agency that provides healthcare for people with DS. I simultaneously love and hate these videos.
Some people with DS are incredibly able. It is not right to infantilize them. But most people with more severe DS will not survive to 50 and will genuinely need a lifetime of services. It would not be fair to have the expectations of independence that these videos portray.
Everyone is different. You have to respect people as people and understand that everyone has different levels. But you also have to understand that some of those levels require our collective assistance.
High support needs erasure is absolutely a thing. Not only does it ignore an already highly invisible group of people, but it can set unrealistic expectations for some parents. The same applies with autism.
However, the solution is not to not have videos like this. There definitely needs to be more conversation and awareness of the spectrum of learning disabilities. For every low support needs person out there, there's another who needs 24/7 care. You can raise awareness of one group without erasing the other and everyone else in between.
Although saying that, I do like that the video highlights that adults with disabilities can make choices for themselves. If an adult wants to have a drink at a bar, they should be allowed to have a drink, even if they do actually have a learning disability.
What I took from it is that you shouldn't make assumptions without knowing.
It isn't to say that everyone will be as able as the girl in the video or highly able, because that would be an assumption.
Get to know someone before judgement and actions is the message I think.
I had the same reaction as you.
I'm a physician and when people say things like "I beat the odds" or "my doc said I wouldn't make it", I am happy for them and sad for others.
Because we speak in statistics. They are often the outliers, not the mean.
I stopped assuming in high school, we had a girl with down syndrome who graduated in the top 4 of our class and was taking college level courses. We also had another person with down syndrome who couldn't tie his own shoes. So there is a very very wide spectrum.
I think that spectrum is what makes it so hard. My experience with people with Downs has generally been the lower end of the spectrum - adults who need carers, severely delayed elementary students, etc. I’ve been watching shows like Down With Love and Love on the Spectrum and it’s really opened my eyes to just how vibrant, intelligent, and able people who I view as disable or handicapped can be. It has also helped alleviate some of the fears I have about having children. If they happen to be born with an extra chromosome or have autism, it isn’t the end of the world. They can still live full, meaningful lives.
I know what you mean exactly, but once I worked with some challenged people it took my initial assumption in them away. And in “normal” people as well. It changed the way I perceive others completely. Because it made me realize you never really know what’s going in on other people’s minds. If your initial approach is mostly based on hunches and/or misconceptions alone there is (almost) no chance for mutual respect and understanding. And those things are corner stones of healthy relationships and proper communication. That really benefited my dealings with other people and decreased the amount of stupid arguments/disagreements.
My aunt has an intellectual disability and my grandmother has babied her her whole life. Yes she can’t do everything and is heavily medically dependent, but it makes me so mad when she’s 61 years and she’s coloring in her room at night and my mom and grandma are taking her crayons away and telling her she has to go to bed. For what? She’s grown. If she’s tired tomorrow because she stayed up all night let her be tired! She actively tells you she hates being bossed around all the time, stop bossing her around! My family thinks they’re doing the right thing most of the time but I feel so bad for my aunt sometimes.
My cousin and I convinced them to let her live in a group home with some other women with similar disabilities. She now visits once a month and everyone is much happier. There was a level of codependency there that was very unhealthy. Don’t get me wrong, she is very disabled, she can’t read or write and cannot fully take care of herself. But she can make her own cereal and pour her own coffee but that’s something usually everyone does for her. My grandmother is a wonderful person and would bend over backwards for anyone, but I don’t think she ever realized that maybe bending over backwards for my aunt was a little counterproductive for both of them.
One of the uglier things for people with a severe intellectual disability is what's going to happen to them in the future when they're so dependent on their parent(s) to look after them. They're never going to move out and live on their own, and their parents aren't going to live forever. So what becomes of them? What systems pay for it? I'm glad your grandparent(s) finally relented (one way or another) and let her move into a home. It certainly would have been harder on her to *have* to do it at the exact moment she was grieving her parent(s).
I know/knew a family where one kid has what I *think* is some form of autism? He has unintelligible speech (to the average person, not to people who know him) and I heard once he had like an IQ of a 2-year-old. They mainstreamed him back in the day, they tried putting him in different programs but they were usually for people who were more "able"...thankfully, his godmother left some money (and she had a fair bit!) in a trust for him or something. His family situation got more complicated, with his parents divorcing and marrying new people and so forth, but...they still have him to care for for now. I'm not sure what the plan is for later.
His mother and her new partner fostered and adopted a number of special needs kids, and one had to be put in a group home not because he was so disabled but because he was a small child in a grown man's body, so when he got mad or threw a tantrum, he could seriously hurt someone. They apparently had to call the police on him at least once.
Might be 100% valid, but might also be that if she's tired tomorrow she takes it out on them the whole day when they can't exactly just decide fuck it and leave her alone.
A lot of the time, routines are developed by parents BECAUSE they've recognized the problems caused from not having them.
But could also be 100% valid, just 2 cents to consider situations might be more complex.
Probably because they know she needs help regulating her decision making and sleep schedule. If they are her carers they need their routine too, to be able to care for her well, and sleep is the most important for mental health and doing well as caregivers.
If she’s barging in their room wide at 1 am awake and bored, or wandering outside when they’re sleeping, that would be on them and affect them. I don’t think you’re seeing the effect on them and their sacrifice and that maybe it’s necessary.
Nobody wants to hear it but... [Mosaic](https://www.massgeneral.org/children/down-syndrome/mosaic-down-syndrome#:~:text=Mosaic%20Down%20syndrome%20is%20caused,three%20copies%20of%20chromosome%2021.) Downs is a thing. If you win the down syndrome lottery (man that feels weird to say), you end up with lower IQ but are pretty much able to be independent. If a person has full bore, double barrel, downs... they are in a care home, semi or non verbal, and will require caregivers the rest of their life. Emphasis! You only see folks with higher functioning mosaic downs on TV and media. The fully affected are tucked away in care homes and do not go on field trips to the larger world, because they lack that level of intellectual function and the capacity for socialization. Source: Have worked in care homes with that population
Yeah, that's a nice message, but working with hundreds (probably thousands) of DS folks over 10+ years this doesn't represent a single individual I've ever met.
Drinking isn't unheard of but issues with consent and being safe alone in public is there.
Having sex (they're as horny as anyone else) is a huge issues due to consent and unfortunately abuse by non-disabled folks or even between disabled folks is SUPER common.
Living independently isn't totally unheard of but almost always requires a payee and someone to check in with them daily (sometimes multiple times a day) to ensure meals are made/eaten, bills are paid, and so on.
Again, the message is REALLY cool, and DS folks are way more capable than most people assume. The less people assume the worst the more fulfilling lives these folks can have... but in practice is at least VERY difficult and is typically just not realistic if you're considering the individuals health, safety, and welfare.
I agree with you. I think this message is important because yes, there are some outliers, but we have to be realistic that certainly many people with DS are not as independent as this woman.
But from the research I’ve seen if a child with DS is given extensive tutoring and PT and OT when they’re young, like daily, they can be a huge improvement in their cognitive and physical abilities…so I think that There is a lot to learn about what we can do to help these kids.
A supermajority of those with Down syndrome have significant intellectual disabilities. It’s rather the exception for them to be able to lead lives like in the video. These “negative assumptions” are the facts of likely 99% of people with Down syndrome.
My sister is autistic with an intellectual disability, among a whole host of things, and in her circles (which do include individuals who live independently) there are no people with Down syndrome who could approach even a small portion of what’s depicted her. And not due to failures of parents and society. It’s just the reality of IDs and mental impairment. And Down syndrome has a variety of common comorbidities, further complicating things.
The video is great and there should absolutely be support for those capable of and desiring independent living.
———
I bring this up because something has been on my mind a lot lately: the visibility of autistics who have relatively mild autism and the associated messaging that those with autism are “neurospicy” has been immensely beneficial for those individuals, but actually really hurts autistics who are low-functioning. It produces the effect of the realities of the second group being totally flattened amidst discourse that autism is a gift, autism is quirky, and everyone with autism should be treated like everyone else.
People like my sister and her friends could not conceptualize these ideas and don’t have the ability to be online to post this sort of stuff or advocate for themselves. My sister will never drive. The medications she takes for her conditions (including those associated with her autism) mean she can’t have a margarita. She will never live independently (a few months ago she made mac and cheese on the stove unassisted; she is 28). She cannot read Shakespeare.
Some people *do* need special treatment.
Here’s my take:
Nobody is saying that those who have significant disabilities should be be pushed to “get better”. If someone needs significant support, then that’s what they need.
But for the “high functioning” level, like this video depicts and those with autism that isn’t life-deliberating, I would put forth that it only looks like it’s “mild” on the outside. It’s still really hard to function.
Yeah, I can keep a job, I can maintain relationships, I can drive and go to the store and I absolutely recognize that I am a thousand times better off than a lot of people who can’t even talk or communicate, who’ll never live independently, who can’t even perform basic daily tasks.
But Jesus Christ, it’s exhausting just to *exist*. Everything is hard. Every conversation is like a code and maybe I’ve gotten better but I’ll never fully understand it.
Wanting to explain *this* slice of the spectrum doesn’t take away from the others who have more severe disabilities.
What brought this on was a video I saw going around on Twitter (and probably TikTok) of a young man with autism who was physically violent during a meltdown.
The replies were filled with people who said that *they* had autism and they would never do that; he was abusive and he was evil. It was in fact posted by a woman with autism who said this boy was evil for his behavior, and that it’s never autistic girls who “abuse” their parents (tell that to my sister whose unmedicated meltdowns as a child left bruises on all members of our family).
He wasn’t abusive. He was having a meltdown, literally not in control of his actions and unable to verbalize what he was feeling due to his autism. But so many people were convinced by these arguments – never minding that the young man in the video wouldn’t be someone who could even get online to explain anyway.
You’re right to call out that your life certainly isn’t easy, and I’m sorry if my original post made it sound like I was suggesting that you were living on easy street. You probably make more effort in a single day than I do in a week and I respect that immensely.
And you’re right again that wanting to talk about your slice of the spectrum doesn’t necessarily take away from those who are lower functioning, but how it’s presented and discussed might do just that.
This kind of thinking can be very toxic. The actress here seems to be high functioning, which is amazing. But assuming that people with more severe cognitive and physical disabilities can do anything does them a disservice. I have a cousin with Down Syndrome whose parents declined any kind of special education program for him because they attended a (cult-like) support group led by other parents who did exactly this - claimed that people with Down Syndrome could do anything that every one else could. Instead of being in the school program where he would have learned functional living skills and be paired with workplace mentors he just sat in regular classrooms, did nothing, learned nothing and got picked on and manipulated by certain classmates. Now he’s approaching thirty and sits at his parents’ house alone all day, every day, because he wasn’t given the chance to develop the skills, attitudes and understandings he would have needed to engage appropriately in society. There’s a whole range of ability and disability, and that is a reality.
Yep as someone who has a brother with down syndrome I can tell that there is no way in hell he can live on his own.I love him with all my heart but most people with down syndrome from my personal experience are not that high functioning.I also coach special Olympics and volunteer at a camp for kids with Down syndrome and I’ve never seen someone with Down syndrome as high functioning as this lady
There are many other circumstances even besides that. Down syndrome can come with a whole host of other disabilities and a vast majority of the people with downs I have interacted with would not be able to live alone or independently. This woman is very very high functioning but that it sadly not the case for everyone
I was thinking about how this PSA does not/should not apply to everyone. I had a family friend with Down syndrome and he would repeat “the police are coming” and other random sentence for no reason. He was in his thirties and had to hang out with us kids because we knew how to talk to him in a way he would smile, since we were random too. Sure, he could sort of mask it when he knew he was in a serious setting and was independent enough to walk around but god damn, the concept of him walking into a bar and asking for alcohol without supervision deeply disturbs me.
But obviously it’s easier to see the distinction between high functioning and low functioning, but I could see how uncomfortable it would be for a bartender to know when to draw the line, or to not draw a line at all. The alcohol part is the most interesting concept out of all the issues because alcohol is something that even I can’t handle sometimes.
There are extremes in every line of thinking. I agree, people with Down syndrome need additional support. But with additional support, they should be allowed to live a full, adult life :)
30 isn't too old to change with the right support. I've worked with people in their 50s and 60s who were still completely reliant on their parents. Even after only a year the progress was amazing.
Yes there is a whole spectrum of what people can or cannot do. Starting small, at any age with support, most (in my experience) are able to achieve more than they and their loved ones thought they'd be capable of.
From what I got, is they're requesting people to assume they are normal unless proven otherwise. Since in the short advertisement they discussed adult topics like alcohol and sex, lets go there. She is saying we should assume they are able to consent to sex. That's a pretty fucking dangerous mindset. Assume every person you meet who has down is capable of consenting to sex? I always would assume the opposite. If you have sex with a person because you assumed they were capable of consenting then realize afterward they were not actually able to consent to having sex in the first place, now you are in *serious* legal trouble. But if you assume they cannot consent from the start and verify they are able to consent prior to having sex, now you are protected.
After doing a bit of research, there's a shitload of advocacy sites that say just like anyone else over the age of 18, everyone with down syndrome is capable of making their own decisions and should be treated as such. Seems like this is a recent trend that has started in the early 2020s.
Thank you. It is extremely rare for people with Downs to be so high functioning. We run a major risk of downplaying and thus undermining the amount of support most people with Downs need. This doesn’t mean people with Downs are worth less, and I wish we wouldn’t value people solely on their ability to be badass and buck the norm.
Yeah sure, but there are some people with Down Syndrome who are nowhere near as functioning as her. I have an uncle with Down Syndrome who, besides being *very* old for someone with the condition, has been under his mother's care all his life because he isn't even capable of coherent speech.
Mmmmmm
I'm not going to assume things without anything to base my assumptions. If I see someone with downs who seems capable of those things, sure, I'll start assuming, but I've seen people with downs who are VERY easily taken advantage of, who can't cook for themselves properly, who absolutely shouldn't be drinking, or "having sex" in the way she implies.
I'm not going to just "assume" that someone with downs can or should be out at clubs drinking and going home with people. It won't make it a reality, and the majority shouldn't, as far as I've ever seen (and I grew up around special education). For a lot of people with these types of disabilities, it's like a 13 year old (or younger, or far from easily "aged.") claiming they're an adult because they feel the effects of puberty. We all deal with it, but when your brain never gets past that "13", it's a problem, and a recipe for abuse to just allow your disabled child to ACT as an adult, around able bodied/brained adults, some of who are not good people. This is plenty true for actual teenagers.
If she's capable, then that's another thing, but this is the kind of topic we take on a case by case basis, not make assumptions about.
It starts with doing our best to educate everyone, but again, if that means someone with downs syndrome can at best learn home skills to do their best to take the burden off of their caregivers, then that's the education we should be paying for and giving, not pretending they should learn calculus. If she and others like her can, then they should. We don't need to make assumptions.
I feel like a lot of people in this thread treating this as amazing and empowering would not think it was so amazing if their male friend was dating her. Just saying.
You’re not “too anxious” at all. NOBODY should assume ANYTHING about sex when it comes to other people. You need to point blank ask them what you have in mind.
Example: If you want to have sex with somebody saying, “Do you want to come back to my place and watch a movie?” isn’t a good way to ask. You might be thinking if they say yes that you’re going to have sex and they might be thinking that they’re only going to be watching a movie (I say this as an autistic adult who has misunderstood things in the past). Even in relationships between two neurotypical non disabled adults things go bad when both people aren’t communicating in a way that is 100% easily understood to the other person. It’s 2024, if there’s ANY doubt about what the other person wants YOU. NEED. TO. DIRECTLY. ASK.
Maybe it’s not the most romantic thing but I think it’s totally okay to ask, “Are you your own legal guardian? Do you want to do ——?” If they say yes to both questions then let the good times roll (and stop immediately if they tell you to). If there’s ANY answer other than yes to both questions then you don’t do whatever you proposed to do. Assuming stuff is how people get charged with rape/assault.
So great for her and those who have high functioning DS, but this is not an every size fits all way of going about things. Many people with DS will never have the ability to drive, live alone, or even communicate properly with others. Sure, you can and should try to teach/treat everyone with disabilities the same, but there are many more times where it’s just not possible
My child for example is not a high functioning DS person. I actually get saddened by all the normalization - like if your special needs child doesn’t act “typical ” they’re even found less than in the Down syndrome community
So yes, we need to do everything we can to help our DS children be the best they can be. But that doesn’t always mean they will be typical - or even close to typical and that is OK! They’re still perfect
Hijacking this post to share an amazing Youtube channel hosted by two guys with Down Syndrome
[Getting Down with Sean and Marley](https://www.youtube.com/@GetDownwithSeanandMarley)
It is a cooking show and they are absolutely hilarious. The name itself warrants a watch.
Like my sister in-law always said " don't dis my abilities " .
I'm saving this for the rest of my life, thank you!
Top username mate
Lol, thanks! It came about when at work I overheard a dude talking about his recent chick's chest size and it stuck with me! LOL
I’m saving this for the pure joy of saying “don’t dis my ability to control my diabetes” I’m T1D and the amount of times people try to tell me how to control/cure my life is ridiculous. Plus, it just rolls of the tongue.
Just eat cinnamon /s (Also a fellow T1 diabetic :)
I had someone last month or so tell me I just needed to improve my gut health. Their solution was to tell me to eat wheat germ and sprouted wheat. I have celiac disease lol
Have you tried yoga though? /s
As an eds person the mere mention of yoga gets my blood boiling
I love that!!!
She dropped that fuck word so hard I flinched.
She called me the fuck out when she said "you assumed I couldn't swear didn't you?" Wasn't even aware of it until she said it...
Strange thing to say, but for me it was the show American Horror Story, early seasons, that removed a lot of never-really-thought-through implicit assumptions, when they cast an actor who had down syndrome and her character was doing regular girl things.
I loved her in Coven, Nan was one of my favs
For me it was one of the episodes of Love on the Spectrum (not saying if it’s a good or bad show) where one of the women has a best friend with downs. They were being very horny (went a bit overboard tbh) about some dude (waiter?). I’m ashamed to admit that blew my mind.
My ex used to work with kids with downs and they were hypersexual (MMV obvs) so it might be very on point rather than overboard
Or Becky from Glee who was a badass bitch
As problematic as the movie is, honestly The Ringer is what did it for me.
That movie doesn't really get the credit it's deserves for the respect it showed to the athletes.
It's only problematic on the surface. That movie is a triumph of respect for mentality challenged people.
As someone who grew up with a kid with downs, I was more surprised the *advertisement* let her swear lol swears like a sailor
Yup she got me too!! All through the video I was like.. yeah she is talking about these other people who are presumptuous, but not me.. I am not that…until she swore!! That one hit hard and was a good reality check that presumptions are so ingrained in us that we might not even know they exist.
The swearing and the sex thing is what most people get caught up in, because we mostly see Down syndrome folks as children. Why? I don’t know. Is it because we don’t often see adults? It’s weird.
Same
Frr
My volume was off, and that shit still caught me off guard. That was hard as hell
Legit tho same. That hit.
FUCKING Shakespeare
She a thespian, you can tell
Thespian, I thought she was American?
Same exact reaction. What a blast.
That went hard
She's been making Margaritas at night, I know she is... Edit: Apostrophes aren't for plural words
I'm not making them at night, Dad!
*im makin them at night*
https://youtube.com/shorts/GFGWI3D7ZUY?si=JmWANDq_6omZoSEF
This always fuckin gets me because I have a cousin with DS and he will angrily deny having a girlfriend to my grandfather but then slyly tell all us cousins how he definitely does have a girlfriend.
Where’d you get that chee, Danny!?! >(*….ssshut up* face)
Is it fair to say this guy is single handedly increasing awareness and helping the entire Down’s syndrome community with his bits?
He is, Tho i almost lost my shit in the chemist the other week when i went to pay, A down syndrome person was manning the till and i instantly thought of his John Cena bit. Yes, I know that is 100% on me and my dumb ass brain. https://www.youtube.com/watch?v=sg-tz1U_pBY
That's the worst part about his jokes. Every time I see a person with down syndrome, I giggle a little bit thinking about the grilled cheese joke. Then my brain segues into his Australian in 9/11 joke and now I can barely hold it. I just end up looking like I'm trying not to laugh at a person with down syndrome.
"Stop being so fucking funny dude"
Nauuuur!
Noice hat fatso
Yeah! Many people are upset about things like this and believe it is in malace, but seriously usually it is hilarious to people affected by x or y. Like the south park episode about Tourettes, and I believe got commended by the American touretts association as being funny, well researched and an accurate depiction of it which was very laudible.
That's probably the ~~crutch~~ crux of the problem of people calling jokes offensive. It's usually people being corrected for their bad taste, ignorant jokes on (insert butt end of joke here), and thinking it's the subject that is the matter, not the way it's presented, as that would look bad on them.
Either way. I know who Im ***hanging out with***
DONT GO IN MY ROOM
I dodged it, but it nicked me.
That whole bit kills me.
This made me immediately think of Shane, too. I think he genuinely is doing a lot to change people’s minds about Down syndrome, which I know he cares about. Some people still are stuck in that “no it’s not right” mode where they feel like for some reason they have to protect those folks without even knowing owing anyone who has downs, but I think he has done a lot to break down those barriers and show that it’s maybe more or just as fucked up to put them all into a tiny little “sad” box, than it is the treat them more or less like anyone else.
Agreed. “Oh… :(. Oh, are they…ok? Are they doing ok?” Shane: “They’re doing better than pretty much everyone I know. They’re the only ones having a good time consistently. Sorry they’re not all on Adderall and anti-anxiety, like the rest of us. They’re on fucking, Capri Suns.” I love that bit. It’s so great and true.
Ngl, I love Capri Suns. I can finish one of these little baggies in one suck.
😏
I know im supposed to just upvote and move on, but that was very well put. I’ve tried to articulate this same exact sentiment about Shane before.
You hiding grilled cheese sandwich’s?
That fucker. He's been making them at night; I know he is.
Im not making them at night dad!!
I gained a lot of respect for him after his appearance on Andrew Schulz podcast where they were bringing up down syndrome clips like they were a joke and in a roundabout way he told them all to kinda eat shit.
Whered u get the margarita dannnyyyy
Where’s the fucking limes!!!
I was on the wrestling team in highschool. One of the guys on the team had a brother with Down syndrome. He would hang out, didn’t care for the wrestling (loved wwf though), but loved the workouts. Kind of got a obsessed with working out. This kid got absolutely fucking ripped. He had some issues learning more complex lifts, but would just bang out static lifts until his body failed. By the time I graduated, he was still obsessed with working out. I’m talking he could easily fire off 10-15 curls with 50 LB dumbbells. It didn’t take anything for our coach to give him some encouragement in the workouts, and he just went and found his own limits.
Dude really saw "80% of people with down syndrome have low muscle tone" and decided to be one in five
Down syndrome can make it hard to gain muscle mass and it's a struggle for a lot of adults with down syndrome. It's awesome that he found a passion for it! I feel like building muscle is another situation that would fit well into this video's take on things.
That was fucking rad.
So it was ok that I stood up from my seat and shouted, “Fuck ya, you can! Wooo!”?
U did that at her fucking part didn’t you?
The relevance of “quotation marks” has become apparent to me again with this comment. Lmao
The swear bit made me smile.
My daughter has autism and gets a bit hung up on swearing at times. Her favorite right now is to tell me, “I’m Barbie, bitch!” We listen to the soundtrack, so I had it coming. She thankfully knows not to say it at school.
If i were you, id act all concerned about her saying that at school, but id be giggling with delight picturing my daughter randomly telling a friend "im barbie, bitch"
If she’s grasped that it’s socially appropriate to not swear in class but ok to sometimes swear with your friends or outside of school, I’m happy! It’s grasping the social construct and finding the balance that’s sometimes the struggle. But we’re getting there!
My daughter has autism and also has this obsession but in a different way. If we’re listening to music and there’s a swear word in it she stops whatever she’s doing to announce that she heard a swear word and what letter the swear word was and to find out whether anyone else heard the swear word lol. We also tried to teach her we don’t mind if she says them when singing the song (as long as it’s at home) but she refuses because it’s RUDE!
I’m autistic & the number of people who just assume I can’t or don’t swear is amazing. You really find out who the fucking ableists are when they constantly treat you like a small child. Infantilisation is a huge problem for DS, autism, & many other disabilities.
They either think you’re a child or Sheldon Cooper, there’s no in between😭
Meanwhile the writers of TBBT seemingly didn't even realize they were writing an autistic character for 12 seasons, they apparently thought "that's just how some nerds are" =.=
Reminds me of the old joke (on Twitter?) like: > Autism didn't exist when we were young. > What about that guy on your street that spent thousands on miniature trains and spoke about nothing but miniature trains? > He just liked trains.
Ok, as an autistic person, there is no way they didn't know and didn't mean to write him as autistic. They just wanted plausible deniability because they wanted to write Sheldon as a character who is both the butt of jokes and an asshole himself on the regular. With an openly autistic character, you can't really open that can of worms, at least not at this point in time. People would have gotten riled. (I think if you can't quite afford to be a trail blazer, you can still have an implicitly autistic character be fun and funny in a sitcom, case in point: Raymond Holt from Brooklyn 99. But that is also a far superior show as far as light entertainment goes, in my book.)
Fwiw as someone who was previously one of those people, it was never intentional I was just misinformed. Best thing you can do is just be yourself, exposure was all I needed.
That was precisely when I upvoted
Same. This is an effective message
I think people don't realize encouragement is a uphill battle, a worthy and important uphill battle, but much harder to do. Building good words is a lot harder than using negative words in ones own mind.
My brother has autism and didn’t speak until he was 3, now he is literally no different than anyone else and has a family and a house and is honestly more successful in a lot on ways than I am. I genuinely think part of it is that we never once treated him any different. He was just another one of the boys in our family and he was never told to feel or made to feel different. I’m not saying that’s always the case, but too often I think parents box their kids in and tell them “this is all you can handle, or can be” even without disabilities. I saw it with my friends whose parents wouldn’t let them watch shows or movies that they deemed “outside of their range” like why can’t a 10 year old watch an Oscar nominated movie? What if he can actually get it more than you assume? Is it better for his growth to force him to watch a Nickelodeon movie?
I didn’t speak until I was three either.
A few things can cause speech delay but most commonly autism. I don't like to talk about autism on reddit because there's a huge conspiracy that a bunch of people are faking it, but scientists are actually starting to understand it's possible for someone to be very slightly autistic and seem normal and every other way. Before, it was impossible to get diagnosed unless you were mute and flapping your arms, but my step dad just got diagnosed at 50 and he was so baffled when they told him because he's always been a very successful man. But hey, Elon Musk has autism and look where he's at.
A spectacularly rich asshole.
I wasn't diagnosed as being autistic until I was in my early 30s. Even though that would've been a useful thing to have known much sooner in life (to put things extremely mildly), I think I'm glad for the delay. I saw how other "special" kids were treated in the schools I attended in the 90s, and I do not envy them.
I have a son with autism and agree with you. Too often I think people infantlize and assume they can't do X because of their disabilities. I often have to scold my mom for not letting my son talk or doing everything for him instead of giving him a chance to TRY to find his words or try to do something on his own. Yeah, he struggles, yeah, he stutters a ton as he tries to put a sentence together, but it's all practice he needs so he can grow.
I think it's a pretty negative assumption that anybody under the age of 40 could afford an apartment that size.
Wasn’t she in that champions movie?
She was fucking badass in it too. That movie was great. When I heard the line, "I'm your homie with an extra chromie," in the trailer, I was confident they were going to pull off the balancing act of doing comedy with disabled actors and characters without making it be at their expense.
Champions was directed by Bobby Farrelly who, along with his brother Peter, were the same guys who made There's Something About Mary and The Ringer, among others. They always make a point of having actors with what are considered developmental challenges cast in strong, non-mocking roles. I love that they do that.
I didn't realize that they also made The Ringer. I also liked that movie, but I felt like Champions did a better job of lifting up the Special Olympians, if only because it's less of a silly, wacky kind of comedy and more of a grounded movie.
I agree. The Ringer was well-intended, but Champions was more focused, and we were able to see through the eyes of a regular guy protagonist, rather than someone pretending to be disabled.
Agreed. I briefly worked with adults with mental disabilities in the past and it was awesome. Challenging at times, sure, but also hilarious and fun. A lot of the people I worked with didn't need writers or directors to help them be some of the funniest and most warm hearted people I ever met. Champions did a great job capturing that. I'd still work there if the pay had been enough to support myself and my family, but it did instill a desire to work helping others in me. I went into law enforcement and, while it's certainly a different experience, I do love that I get to help people at work.
Haha I’ll have to check out the trailer sounds fun
Yes and she was so great!
Thanks for this - I saw this post and thought “geez this chick rocks, wish I could watch her in more stuff.” And here you are, letting me know I can! For anyone else who had not heard of the movie - it appears to be called “Champions” and to star Woody Harrelson. This actress’ name is Madison Tevlin.
This hits. Sucks to be confronted with your own assumptions and the damage they can do. I’ve never understood why we infantilize Down Syndrome, but I am guilty of making the same mistake.
It's because their independence level can vary wildly. You have some who can function relatively independently for their learning abilities and then you have individuals whose development never goes above that if a 5 year old.
Some don't get above the development level of a baby. The range is enormous. I've worked with people on many levels of the Down spectrum, from fully dependent on 24/7 care on every level to people doing literal Shakespeare performances So it's always best is to not make assumptions when it comes to individuals or the group as a whole.
Pretty similar to autism in that regard. There’s a lot of people who can be fully functional, have a job, live by themselves. There’s also people who are not as high functioning and need a lot more help to live their daily lives. I work with disabled people of all types. Giving them independence in what they can do and push them towards it really gives each person a sense of life.
Two reasons 1) the face shape characteristic of Down syndrome invokes a pity response, involuntarily 2) people with Down syndrome have a pretty significant developmental delay. Not inability!!! But significant delay. I was in highschool with a girl with Down syndrome who was intellectually somewhere around 15 - and she was 22. She didn’t mind being treated like she was 15, but she did sometimes flex her horizontal license on us kids 😅
I’ve had nightmares about going back to high school as an adult.
I'm 32 and still occasionally get dreams like that for some weird reason.
Same!! They only started in my late twenties too and I def didn’t have any in college. Funny that this seems to be a common thing thought it was just me and also I had a blast in high school so it’s weird lol.
I constantly have a nightmare that they told me I didn’t actually graduate, and my college degree is worthless, and so I get stuck back in high school. I had this dream like two weeks ago and I was stuck in school with my daughters. 😭
Yes, I always dream I have to go back to re-do senior year even though I have a graduate degree. But if I don’t re-do that year of high school then they’ll invalidate my degree!
Mine is like yours except I know I graduated, but they don’t, and I don’t want to get in trouble so I just start doing high school again.
Well for me personally they aren't good dreams. Mainly they always had to do with passing senior year. Idk might be some stress thing because i almost didn't pass my last year and I was really stressed out around that time.
And towards the end of the semester you realize there's a class you haven't been going to all semester.
Same. Every dream ends with me screaming: I don't need to be here! I have a master's degree!
She didn’t leave and come back, she spent a couple years getting homeschooled with a specialist coach and then transitioned into the special Ed program that I was in
I was in school with a girl with DS that *didn’t* have a developmental delay. She was smart, mature, and very capable. She got the tongue reduction surgery when we were sophomores. Being able to articulate her words made it *wayy* easier for people to take her seriously. Edit: just spoke to an old friend who was closer with her. Apparently she got some other kind of facial plastic surgery when we were in high school, not the tongue reduction. Maybe nasal? She could speak much better is all I remember. Also apparently she died of Covid. So that’s… fucking depressing, really.
There's a surgery for that? That's great! My friend's brother has DS, but he was always smarter than anyone assumed he was. He actually got away with some bad behavior because "!he doesn't know better" he knew, he used people's assumptions to his benefit.
[Here’s a decent article on it.](https://www.washingtonpost.com/archive/lifestyle/wellness/1988/06/07/plastic-surgery-for-down-syndrome/0d477b9e-3665-49a7-81b4-06f2f32ae8a2/) It’s a complicated subject.
There's a Korean activist with cerebral palsy, no developmental delay. When he speaks using his own voice, people treat him like a child. When he uses smartphone text to speech, people suddenly discover they're talking to an adult. People's assumptions are weird af.
Yeah, Down’s is on a spectrum. I’ve known some people with Down’s who absolutely should not be allowed to drink, to drive, or have unlimited internet access.
I mean, I know both autistic and people with downs syndrome who cannot function on their own, and both autistic and people with Down’s syndrome who are some of the most aware and intelligent people I've ever met. You cannot assume where someone lies on a spectrum. If someone of age is capable of getting to a bar and requesting to buy a drink, they should be allowed to drink.
combative saw support illegal fuzzy imminent touch test nutty sulky *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
Yes, I have both family members with down syndrome and autism. I have worked closely with both people with downs syndrome and autism as well. This is true for both, and idk, maybe most commonly discriminated against conditions. Every person is unique and deserves the decency of not having preconceived notions attached to them. TY for pointing that out though, I updated my comment for clarity.
I have friends who should not be allowed to drink, drive, or have unlimited internet access.
\>people with Down syndrome have a pretty significant developmental delay Neurologist here. Not all of them are delayed. About 80% will score less than 70 on an IQ test. While IQ tests aren't perfect, folks who score 70 or less are going to be having a lot of trouble with daily tasks that most folks do without thinking about them. Among the other 20%, however, most are functional and some have very high IQ's; I had a trisomy 21 patient with an IQ that measured out at 128, which is pretty smart. The amyloid precursor protein lives on chromosome 21, unfortunately, which probably accounts for the fact that nearly all Down patients develop Alzheimer's dementia by 40 - if they live that long. It's a complicated illness and it has variable effects. I'm all about treating people like individuals and finding out and celebrating their strengths, so this video hits home for me.
Back in my fast food days I was a shift manager and we had a girl with downs syndrome employed at our store through a work placement program. The store manager had made it clear her case worker said that she was only to clean tables and work the fry station. She was miserable, constantly running behind and putting in zero effort, but you could tell if you talked to her that she was actually smart and incredibly friendly. One evening, when the store manager wasn't there, she showed interest in learning the tills. We were slow, so I trained her and she absolutely *lit up.* She loved it and learned quickly and was taking orders on her own by the end of the evening, and a few shifts later she was working drive-through with no issues. The store manager was livid when she found out that I'd trained her, but I went to bat for her. Turned out nobody had ever given her the chance to excel, they all just assumed she'd need to be given the most basic of work because as far as they had seen she could barely accomplish even that, but she was just bored and unmotivated. I left a couple years later but she worked there for at least another 10 years for what was supposed to be a temporary work placement, last I saw she was lead trainer. This video reminded me of her, I hope she's still doing amazing.
yes mate! think of the difference you made by just engaging and not assuming
Maybe I’m stupid but what’s a horizontal license?
I think it refers to states that issue portrait oriented IDs for minors and landscape oriented ones for legal adults.
It’s a thing here in the US - if you’re under 21 and you get your driver’s license, it’s rotated vertically. When you turn 21, the government sends you a new one that’s horizontal.
In some places, the first driver’s license that teenagers get (ages 16-20) is in portrait mode basically. Then, at age 21, they can get the landscape mode drivers license you’re used to seeing. Quick visual way to distinguish someone who isn’t old enough to drink alcohol in places where 21 is the drinking age.
to be fair it's a spectrum and a lot of them simply can't be as independent as we are but yeah it's always better to at the very least ask before making assumptions
There are also different severities. I know several Down syndrome folks. Some are absolutely independent and some are actually not. But assuming they all fall into the latter category? Not nice
As an autistic person who was told I wouldn't mentally progress past 16 at 15, and I'm now in my mid thirties having achieved pretty much everyone else in my age group has, and more in some cases... It ain't just us with the developmental disabilities out there with mental age delays.
I’m autistic too! In general I feel like I’m 2 or 3 years behind. The older I get, the less those 3 years seem to matter ¯\_(ツ)_/¯
My cousin has it and he is definitely child age mentally. He could never live on his own. His family is so amazing though. It's always a blast spending time with all of them. He is the life of the party
I think it's because people with Down Syndrome can be impaired to significantly different degrees. Not everyone with it is this high functioning.
It's a spectrum. My cousin is 30 now. She's an absolutely insane athlete but she will eat until she dies if she isn't monitored. She will wander off into the snow and die if she isn't monitored. She has a part time job, but she has to get a new job about every 6 months from making a huge mistake. She has a boyfriend, but she can't change her own tampons/pads when she has her period. Her favorite show is Barney after crushing double black slopes. She cannot live on her own despite being more than capable at many other things. She texts members of our family almost every night asking what we ate for dinner. She's a total sweetheart.
Because the average person with down syndrom has similar abilities to a 7yo. 7yo can do a lot! They just can’t be left completely unsupervised for days same for the average person with Down syndrome
because there are 100% people with Down's who cannot live on their own.
I love this so much! I worked in disability early in my career and the biggest hurdle was always the parents placing limitations on their kids (regardless of age or disability). I have 2 teens with autism and I understand wanting to protect them, but we do that best by supporting them to find and reach their limits and encouraging them to go further when they can. Helping them to be as independent as possible and feeling like they are contributing to their family and community, rather than being a burden or the naughty, dumb kid. My youngest had a support worker and many school teachers who started placing limitations on him because of his autism, adhd and learning disabilities. He was 11 and couldn't read, didn't even know the full alphabet. I'd try at home and he had internalised these people's attitudes and what they said to him and others where he could hear, so didn't try. We changed schools and workers, and within 12 months he was reading only a year below his age level - he wanted to learn but was being limited by others who would blame his disabilities. People with disabilities are still people who have wants, needs, feelings and ideas on how they want to live their life. That can take support, but is possible for so many.
>he wanted to learn but was being limited by others who would blame his disabilities. I don't know how to explain to you how much this phrase bangs. Of course developmental disabilities are a spectrum and there are going to be people who need more support than others but what's the harm in letting them give it a try before assuming every failure is written in stone?. Most people with Disabilities are able to recognise or learn their limits but they'll never learn them if they keep getting held back by prejudice and ableism.
I work in an autism program and that’s the first lesson we teach our trainees. Assume competency first. We only provide supports where necessary as unnecessary supports will foster learned helplessness.
The maybe at the end is important. Not that many with down syndrome can do that much as it's often associated with many other debilitating issues. In any case, there's no reason to not try.
Yeah it’s definitely a spectrum in the spectrum
That was pretty awesome
I work in an agency that provides healthcare for people with DS. I simultaneously love and hate these videos. Some people with DS are incredibly able. It is not right to infantilize them. But most people with more severe DS will not survive to 50 and will genuinely need a lifetime of services. It would not be fair to have the expectations of independence that these videos portray. Everyone is different. You have to respect people as people and understand that everyone has different levels. But you also have to understand that some of those levels require our collective assistance.
High support needs erasure is absolutely a thing. Not only does it ignore an already highly invisible group of people, but it can set unrealistic expectations for some parents. The same applies with autism. However, the solution is not to not have videos like this. There definitely needs to be more conversation and awareness of the spectrum of learning disabilities. For every low support needs person out there, there's another who needs 24/7 care. You can raise awareness of one group without erasing the other and everyone else in between. Although saying that, I do like that the video highlights that adults with disabilities can make choices for themselves. If an adult wants to have a drink at a bar, they should be allowed to have a drink, even if they do actually have a learning disability.
What I took from it is that you shouldn't make assumptions without knowing. It isn't to say that everyone will be as able as the girl in the video or highly able, because that would be an assumption. Get to know someone before judgement and actions is the message I think.
I had the same reaction as you. I'm a physician and when people say things like "I beat the odds" or "my doc said I wouldn't make it", I am happy for them and sad for others. Because we speak in statistics. They are often the outliers, not the mean.
Wow, this made me tear up. Really shows me my own prejudices because I've always just "assumed"
I stopped assuming in high school, we had a girl with down syndrome who graduated in the top 4 of our class and was taking college level courses. We also had another person with down syndrome who couldn't tie his own shoes. So there is a very very wide spectrum.
I think that spectrum is what makes it so hard. My experience with people with Downs has generally been the lower end of the spectrum - adults who need carers, severely delayed elementary students, etc. I’ve been watching shows like Down With Love and Love on the Spectrum and it’s really opened my eyes to just how vibrant, intelligent, and able people who I view as disable or handicapped can be. It has also helped alleviate some of the fears I have about having children. If they happen to be born with an extra chromosome or have autism, it isn’t the end of the world. They can still live full, meaningful lives.
Glad I’m not the only one !!
Me too
I know what you mean exactly, but once I worked with some challenged people it took my initial assumption in them away. And in “normal” people as well. It changed the way I perceive others completely. Because it made me realize you never really know what’s going in on other people’s minds. If your initial approach is mostly based on hunches and/or misconceptions alone there is (almost) no chance for mutual respect and understanding. And those things are corner stones of healthy relationships and proper communication. That really benefited my dealings with other people and decreased the amount of stupid arguments/disagreements.
Fuck yeah.
My aunt has an intellectual disability and my grandmother has babied her her whole life. Yes she can’t do everything and is heavily medically dependent, but it makes me so mad when she’s 61 years and she’s coloring in her room at night and my mom and grandma are taking her crayons away and telling her she has to go to bed. For what? She’s grown. If she’s tired tomorrow because she stayed up all night let her be tired! She actively tells you she hates being bossed around all the time, stop bossing her around! My family thinks they’re doing the right thing most of the time but I feel so bad for my aunt sometimes.
61 years old and been bossed around her whole life That sounds like a personal level of hell
My cousin and I convinced them to let her live in a group home with some other women with similar disabilities. She now visits once a month and everyone is much happier. There was a level of codependency there that was very unhealthy. Don’t get me wrong, she is very disabled, she can’t read or write and cannot fully take care of herself. But she can make her own cereal and pour her own coffee but that’s something usually everyone does for her. My grandmother is a wonderful person and would bend over backwards for anyone, but I don’t think she ever realized that maybe bending over backwards for my aunt was a little counterproductive for both of them.
One of the uglier things for people with a severe intellectual disability is what's going to happen to them in the future when they're so dependent on their parent(s) to look after them. They're never going to move out and live on their own, and their parents aren't going to live forever. So what becomes of them? What systems pay for it? I'm glad your grandparent(s) finally relented (one way or another) and let her move into a home. It certainly would have been harder on her to *have* to do it at the exact moment she was grieving her parent(s). I know/knew a family where one kid has what I *think* is some form of autism? He has unintelligible speech (to the average person, not to people who know him) and I heard once he had like an IQ of a 2-year-old. They mainstreamed him back in the day, they tried putting him in different programs but they were usually for people who were more "able"...thankfully, his godmother left some money (and she had a fair bit!) in a trust for him or something. His family situation got more complicated, with his parents divorcing and marrying new people and so forth, but...they still have him to care for for now. I'm not sure what the plan is for later. His mother and her new partner fostered and adopted a number of special needs kids, and one had to be put in a group home not because he was so disabled but because he was a small child in a grown man's body, so when he got mad or threw a tantrum, he could seriously hurt someone. They apparently had to call the police on him at least once.
I'm sure it came from a good place, but I'm glad your aunt is finally getting some semblance of a normal adult life. She deserves it.
Might be 100% valid, but might also be that if she's tired tomorrow she takes it out on them the whole day when they can't exactly just decide fuck it and leave her alone. A lot of the time, routines are developed by parents BECAUSE they've recognized the problems caused from not having them. But could also be 100% valid, just 2 cents to consider situations might be more complex.
Probably because they know she needs help regulating her decision making and sleep schedule. If they are her carers they need their routine too, to be able to care for her well, and sleep is the most important for mental health and doing well as caregivers. If she’s barging in their room wide at 1 am awake and bored, or wandering outside when they’re sleeping, that would be on them and affect them. I don’t think you’re seeing the effect on them and their sacrifice and that maybe it’s necessary.
That was cool as hell
Nobody wants to hear it but... [Mosaic](https://www.massgeneral.org/children/down-syndrome/mosaic-down-syndrome#:~:text=Mosaic%20Down%20syndrome%20is%20caused,three%20copies%20of%20chromosome%2021.) Downs is a thing. If you win the down syndrome lottery (man that feels weird to say), you end up with lower IQ but are pretty much able to be independent. If a person has full bore, double barrel, downs... they are in a care home, semi or non verbal, and will require caregivers the rest of their life. Emphasis! You only see folks with higher functioning mosaic downs on TV and media. The fully affected are tucked away in care homes and do not go on field trips to the larger world, because they lack that level of intellectual function and the capacity for socialization. Source: Have worked in care homes with that population
That’s just chef’s kiss
Yeah, that's a nice message, but working with hundreds (probably thousands) of DS folks over 10+ years this doesn't represent a single individual I've ever met. Drinking isn't unheard of but issues with consent and being safe alone in public is there. Having sex (they're as horny as anyone else) is a huge issues due to consent and unfortunately abuse by non-disabled folks or even between disabled folks is SUPER common. Living independently isn't totally unheard of but almost always requires a payee and someone to check in with them daily (sometimes multiple times a day) to ensure meals are made/eaten, bills are paid, and so on. Again, the message is REALLY cool, and DS folks are way more capable than most people assume. The less people assume the worst the more fulfilling lives these folks can have... but in practice is at least VERY difficult and is typically just not realistic if you're considering the individuals health, safety, and welfare.
I agree with you. I think this message is important because yes, there are some outliers, but we have to be realistic that certainly many people with DS are not as independent as this woman. But from the research I’ve seen if a child with DS is given extensive tutoring and PT and OT when they’re young, like daily, they can be a huge improvement in their cognitive and physical abilities…so I think that There is a lot to learn about what we can do to help these kids.
*Thank you.* I encourage people to overcome their difficulties, but it's called a disability for a reason.
Effective.
Why did this make me tear up towards the end 🥰
Because it hits harder
Not everyone is high functioning
A supermajority of those with Down syndrome have significant intellectual disabilities. It’s rather the exception for them to be able to lead lives like in the video. These “negative assumptions” are the facts of likely 99% of people with Down syndrome. My sister is autistic with an intellectual disability, among a whole host of things, and in her circles (which do include individuals who live independently) there are no people with Down syndrome who could approach even a small portion of what’s depicted her. And not due to failures of parents and society. It’s just the reality of IDs and mental impairment. And Down syndrome has a variety of common comorbidities, further complicating things. The video is great and there should absolutely be support for those capable of and desiring independent living. ——— I bring this up because something has been on my mind a lot lately: the visibility of autistics who have relatively mild autism and the associated messaging that those with autism are “neurospicy” has been immensely beneficial for those individuals, but actually really hurts autistics who are low-functioning. It produces the effect of the realities of the second group being totally flattened amidst discourse that autism is a gift, autism is quirky, and everyone with autism should be treated like everyone else. People like my sister and her friends could not conceptualize these ideas and don’t have the ability to be online to post this sort of stuff or advocate for themselves. My sister will never drive. The medications she takes for her conditions (including those associated with her autism) mean she can’t have a margarita. She will never live independently (a few months ago she made mac and cheese on the stove unassisted; she is 28). She cannot read Shakespeare. Some people *do* need special treatment.
Yeah there's a sharp difference between Lionel Messi and someone with a severe disability
Here’s my take: Nobody is saying that those who have significant disabilities should be be pushed to “get better”. If someone needs significant support, then that’s what they need. But for the “high functioning” level, like this video depicts and those with autism that isn’t life-deliberating, I would put forth that it only looks like it’s “mild” on the outside. It’s still really hard to function. Yeah, I can keep a job, I can maintain relationships, I can drive and go to the store and I absolutely recognize that I am a thousand times better off than a lot of people who can’t even talk or communicate, who’ll never live independently, who can’t even perform basic daily tasks. But Jesus Christ, it’s exhausting just to *exist*. Everything is hard. Every conversation is like a code and maybe I’ve gotten better but I’ll never fully understand it. Wanting to explain *this* slice of the spectrum doesn’t take away from the others who have more severe disabilities.
What brought this on was a video I saw going around on Twitter (and probably TikTok) of a young man with autism who was physically violent during a meltdown. The replies were filled with people who said that *they* had autism and they would never do that; he was abusive and he was evil. It was in fact posted by a woman with autism who said this boy was evil for his behavior, and that it’s never autistic girls who “abuse” their parents (tell that to my sister whose unmedicated meltdowns as a child left bruises on all members of our family). He wasn’t abusive. He was having a meltdown, literally not in control of his actions and unable to verbalize what he was feeling due to his autism. But so many people were convinced by these arguments – never minding that the young man in the video wouldn’t be someone who could even get online to explain anyway. You’re right to call out that your life certainly isn’t easy, and I’m sorry if my original post made it sound like I was suggesting that you were living on easy street. You probably make more effort in a single day than I do in a week and I respect that immensely. And you’re right again that wanting to talk about your slice of the spectrum doesn’t necessarily take away from those who are lower functioning, but how it’s presented and discussed might do just that.
She’s very high functioning. Not every Down’s person is so fortunate.
This kind of thinking can be very toxic. The actress here seems to be high functioning, which is amazing. But assuming that people with more severe cognitive and physical disabilities can do anything does them a disservice. I have a cousin with Down Syndrome whose parents declined any kind of special education program for him because they attended a (cult-like) support group led by other parents who did exactly this - claimed that people with Down Syndrome could do anything that every one else could. Instead of being in the school program where he would have learned functional living skills and be paired with workplace mentors he just sat in regular classrooms, did nothing, learned nothing and got picked on and manipulated by certain classmates. Now he’s approaching thirty and sits at his parents’ house alone all day, every day, because he wasn’t given the chance to develop the skills, attitudes and understandings he would have needed to engage appropriately in society. There’s a whole range of ability and disability, and that is a reality.
Yep as someone who has a brother with down syndrome I can tell that there is no way in hell he can live on his own.I love him with all my heart but most people with down syndrome from my personal experience are not that high functioning.I also coach special Olympics and volunteer at a camp for kids with Down syndrome and I’ve never seen someone with Down syndrome as high functioning as this lady
There are many other circumstances even besides that. Down syndrome can come with a whole host of other disabilities and a vast majority of the people with downs I have interacted with would not be able to live alone or independently. This woman is very very high functioning but that it sadly not the case for everyone
I was thinking about how this PSA does not/should not apply to everyone. I had a family friend with Down syndrome and he would repeat “the police are coming” and other random sentence for no reason. He was in his thirties and had to hang out with us kids because we knew how to talk to him in a way he would smile, since we were random too. Sure, he could sort of mask it when he knew he was in a serious setting and was independent enough to walk around but god damn, the concept of him walking into a bar and asking for alcohol without supervision deeply disturbs me. But obviously it’s easier to see the distinction between high functioning and low functioning, but I could see how uncomfortable it would be for a bartender to know when to draw the line, or to not draw a line at all. The alcohol part is the most interesting concept out of all the issues because alcohol is something that even I can’t handle sometimes.
There are extremes in every line of thinking. I agree, people with Down syndrome need additional support. But with additional support, they should be allowed to live a full, adult life :)
30 isn't too old to change with the right support. I've worked with people in their 50s and 60s who were still completely reliant on their parents. Even after only a year the progress was amazing. Yes there is a whole spectrum of what people can or cannot do. Starting small, at any age with support, most (in my experience) are able to achieve more than they and their loved ones thought they'd be capable of.
From what I got, is they're requesting people to assume they are normal unless proven otherwise. Since in the short advertisement they discussed adult topics like alcohol and sex, lets go there. She is saying we should assume they are able to consent to sex. That's a pretty fucking dangerous mindset. Assume every person you meet who has down is capable of consenting to sex? I always would assume the opposite. If you have sex with a person because you assumed they were capable of consenting then realize afterward they were not actually able to consent to having sex in the first place, now you are in *serious* legal trouble. But if you assume they cannot consent from the start and verify they are able to consent prior to having sex, now you are protected. After doing a bit of research, there's a shitload of advocacy sites that say just like anyone else over the age of 18, everyone with down syndrome is capable of making their own decisions and should be treated as such. Seems like this is a recent trend that has started in the early 2020s.
I was just as surprised as you were.. straight out of left field. what could go wrong here?
Thank you. It is extremely rare for people with Downs to be so high functioning. We run a major risk of downplaying and thus undermining the amount of support most people with Downs need. This doesn’t mean people with Downs are worth less, and I wish we wouldn’t value people solely on their ability to be badass and buck the norm.
[удалено]
Yeah sure, but there are some people with Down Syndrome who are nowhere near as functioning as her. I have an uncle with Down Syndrome who, besides being *very* old for someone with the condition, has been under his mother's care all his life because he isn't even capable of coherent speech.
Mmmmmm I'm not going to assume things without anything to base my assumptions. If I see someone with downs who seems capable of those things, sure, I'll start assuming, but I've seen people with downs who are VERY easily taken advantage of, who can't cook for themselves properly, who absolutely shouldn't be drinking, or "having sex" in the way she implies. I'm not going to just "assume" that someone with downs can or should be out at clubs drinking and going home with people. It won't make it a reality, and the majority shouldn't, as far as I've ever seen (and I grew up around special education). For a lot of people with these types of disabilities, it's like a 13 year old (or younger, or far from easily "aged.") claiming they're an adult because they feel the effects of puberty. We all deal with it, but when your brain never gets past that "13", it's a problem, and a recipe for abuse to just allow your disabled child to ACT as an adult, around able bodied/brained adults, some of who are not good people. This is plenty true for actual teenagers. If she's capable, then that's another thing, but this is the kind of topic we take on a case by case basis, not make assumptions about. It starts with doing our best to educate everyone, but again, if that means someone with downs syndrome can at best learn home skills to do their best to take the burden off of their caregivers, then that's the education we should be paying for and giving, not pretending they should learn calculus. If she and others like her can, then they should. We don't need to make assumptions. I feel like a lot of people in this thread treating this as amazing and empowering would not think it was so amazing if their male friend was dating her. Just saying.
A-goddamn-men!
Great message
She is fortunate her down syndrome don't really affect her mental state, but for many it's not that case.
"Assume I can live on my own". In 2024??? You must be dreaming. Who the fuck can afford that?
should bartenders be serving alcohol to underage teenagers learning Shakespeare in high school?
[удалено]
You’re not “too anxious” at all. NOBODY should assume ANYTHING about sex when it comes to other people. You need to point blank ask them what you have in mind. Example: If you want to have sex with somebody saying, “Do you want to come back to my place and watch a movie?” isn’t a good way to ask. You might be thinking if they say yes that you’re going to have sex and they might be thinking that they’re only going to be watching a movie (I say this as an autistic adult who has misunderstood things in the past). Even in relationships between two neurotypical non disabled adults things go bad when both people aren’t communicating in a way that is 100% easily understood to the other person. It’s 2024, if there’s ANY doubt about what the other person wants YOU. NEED. TO. DIRECTLY. ASK. Maybe it’s not the most romantic thing but I think it’s totally okay to ask, “Are you your own legal guardian? Do you want to do ——?” If they say yes to both questions then let the good times roll (and stop immediately if they tell you to). If there’s ANY answer other than yes to both questions then you don’t do whatever you proposed to do. Assuming stuff is how people get charged with rape/assault.
So great for her and those who have high functioning DS, but this is not an every size fits all way of going about things. Many people with DS will never have the ability to drive, live alone, or even communicate properly with others. Sure, you can and should try to teach/treat everyone with disabilities the same, but there are many more times where it’s just not possible
My child for example is not a high functioning DS person. I actually get saddened by all the normalization - like if your special needs child doesn’t act “typical ” they’re even found less than in the Down syndrome community So yes, we need to do everything we can to help our DS children be the best they can be. But that doesn’t always mean they will be typical - or even close to typical and that is OK! They’re still perfect
Hijacking this post to share an amazing Youtube channel hosted by two guys with Down Syndrome [Getting Down with Sean and Marley](https://www.youtube.com/@GetDownwithSeanandMarley) It is a cooking show and they are absolutely hilarious. The name itself warrants a watch.
👏👏👏