12 ms·

For Hire: Dedicated Young Man With Down Syndrome

391 points by mr_tyzic 12y ago

sdrothrock 12y ago
I was afraid that this would be a tacky post hinging around hiring a guy solely because of his disability (i.e., charity) and instead it's a really thoughtful, insightful post about what it's like as a father of a young man with a disability and how hard it can be for people with disabilities to get hired. One thing I wonder (and I don't know if the author comes here): is there no Office of Vocational Rehabilitation or something similar? The author mentions Penn State and I know Pennsylvania has an OVR, even though it can be very hard to communicate with them sometimes. I had this problem when I was younger and had just gotten a cochlear implant. I always fretted about whether or not I would be able to get a job somewhere since I couldn't hear in moderately noisy environments (think fast food, movie theaters), couldn't use the telephone, and sometimes had difficulty understanding people I'd never met before. It was really scary thinking that I would have to live with my mother for the rest of my life, unable to get a job. Being rejected from all of the entry-level jobs I applied to at the time only made my fears worse. I found some good jobs and have a great one now, but I feel for this young man.
GuiA 12y ago
I worked with mentally handicapped kids a lot as an educator when I was younger (albeit in a different country). This wonderful article captures perfectly how, in the right environment, children with Down Syndrome can blossom, but how hard it can be for them as adults once society & red tape & bureaucracy all come into play. (I also worked with children who had Down Syndrome and had not grown up in the right environment- think abusive/dead/incarcerated/etc. parents. That got very depressing very fast, and I'm not sure I could do it again). I think this also highlights how the increasingly geographically fragmented familial unit is problematic: in a culture where several generations of the same family lives under the same roof, the situation wouldn't be as dire. However, in our culture it is typical to have only small portions of a family living together, and for children to move away and live on their own, potentially hundreds of miles away. No situation is perfect, of course - but it's still something to ponder (and it affects other social groups as well, for instance the elderly). There was a wonderful American Life a while back on a similar topic, about a mother dealing with her adult son who had a mental disability (can't remember if it was autism or Down), and fearing for what would happen once she passed away. Can't find it right now; will edit this post if I do.
- anshukla 12y ago
  I believe you are referring to Season 2 Episode 1 of This American Life the tv show titled "Escape". Two sentence summary from the site: "Mike and his mom get caught up in a fight that lots of kids have with their parents. Except in their case, due to some very specialized circumstances, they go through the fight in slow motion, over the course of years." http://www.amazon.com/gp/product/B002V87A4S/ref=atv_feed_catalog?tag=imdb-amazonvideo-20 http://www.amazon.com/gp/product/B002V87A4S/ref=atv_feed_cat...
- nhyun 12y ago
  Is it Act One from the episode called Neighborhood Watch? "Reporter Ruth Padawer tells the story of a woman goes to her neighbors with an incredible request—to help care for her son after she dies—and is shocked by their response." http://www.thisamericanlife.org/radio-archives/episode/420/neighborhood-watch http://www.thisamericanlife.org/radio-archives/episode/420/n...
- gadders 12y ago
  There was a satirical article in the Onion that exposed a similar truth. I wish I could find it now but it was along the lines of "Learning Disabled Man is Only Decent Employee in Local Burger Bar". He was the only diligent employee and the rest were teenagers that couldn't give a shit.
  - StefanKarpinski 12y ago
    http://www.theonion.com/articles/developmentally-disabled-burger-king-employee-only,462/ http://www.theonion.com/articles/developmentally-disabled-bu...
    - gadders 12y ago
      Thank you. Your Google skills beat mine ;-)
  - ape4 12y ago
    I have seen this in real life.
hkmurakami 12y ago
I remember when I worked in an auto-industry factory (as part of my training) in Japan, we wore caps with colored bands that denoted rank/category. New employees were dark blue. Equipment/facility maintenance people wore yellow bands. "Management" inside the factory, as well as the white-collar employees had light blue. Outside guests wore red. Amidst this, workers with disabilities wore caps with green bands. Many were hearing impaired, but there were some with leg issues and others with some form of mental illnesses. This kind of categorization perhaps wouldn't fly in the States, but it seemed to aid the company's goal of having 5% of their factory workforce composed of people with various forms of disability (iirc). As knowledge workers, it's easy for us to dismiss bluecollar positions like these, but working at a enormous Toyota group company, receiving a great deal of training and a respectable wage (you can make quite a bit with overtime), and being part of something that produces countless goods into the world is a pretty good deal for people in a country where it's not illegal for potential employers to ask about your existing medical conditions during the interview process.
- ekianjo 12y ago
  > This kind of categorization perhaps wouldn't fly in the States I see this as a bit of a paradox in the States. There is always some discussion about how everyone should be treated as equal, yet your "race" (whatever that means in the age of genetics!) is recorded by the government, and minorities are tracked by employers even though this is absolutely not related with their skills. If i think too much about it, I'd call it madness.
  - meric 12y ago
    And also levy high taxes on people to support the elderly through social security; the government reduces the ability for individual families to support its own elderly, because everyone's parents are equal.
  - jwr 12y ago
    I also never understood this. Why ask about race if race is supposed not to matter?
caublestone 12y ago
I barely made it through this article. After the 10th minute of pushing through my tears to read, I had to resolve that nothing would stop me. On HN we dream big. And we all agree that we can dream big and maybe hit it big. Imagine what it feels like to realize at a young age that you DONT get to go after your dreams because you are missing the tools. Imagine what it feels like to believe something is wrong with you because you talk to yourself sometimes. Now get back to starting your company. And yet, you can be happy to commute, to have co workers, to have some freedom from our parents.
- jvanstry 12y ago
  I totally agree about the sadness that must accompany realizing you are "missing the tools" to follow your dreams. A wonderfully written account by his father, one which makes me hope I can be continually thankful for the gifts bestowed upon me going forward.
tatianajosephy 12y ago
I have a strong sense that online work - on CrowdFlower, Mechanical Turk, or Elance - could be the path forward for someone like Jaime. Please do note: I work for CrowdFlower. The beauty of online work is its promise of operating as a meritocracy. Access to the labor market is not about who you know, or how you appear, but about your ability to perform. Everything about Jaime, from his diligence to his incredible cataloguing memory, struck me as a perfect fit for the type of work that's readily available online: data collection, cleaning and labeling. Even better, this type of work is going to become a larger and larger part of labor market as the machine learning field grows and the need for clean training data grows along with it.
- GuiA 12y ago
  The problem is that this kind of work is very isolating, and from the article it seems that he really needs human interactions.
- cbhl 12y ago
  Online work solves the problem of not having something to do, but in some sense, going on YouTube also solves that problem. In my opinion, the value of work for someone like Jaime mostly revolves around the perception of independence (I can take the bus by myself) and the social interactions (having co-workers), and online work doesn't fulfill these as well. That Jamie has something to do and that there is useful economic output is a nice-to-have, and likely a subsidized one at that. I would not be surprised if, for example, Jamie's companions cost more ("contribute more to GDP", if you will) than Jamie earns in wages.
  - markvdb 12y ago
    Why not get him an office? Either at the workplace for mentally disabled, or somewhere else. He might also be able to combine Mechanical Turk with physical work at the same place... Researching what someone with Down syndrome did 50 or 100 years ago might also be useful. Quite a few manual labour jobs have disappeared through automation. Looking at those jobs disappearing might also inspire. Looking at places where hand made/artsianal products or services command a premium might also help. Or why not set up a small business tailor made to him and the things he can do? Balancing between his autonomy as a person and maximising his economic output will always be a challenge, but I could see it being worth the effort. Mostly, it could offer him a long term perspective, while at a third party he would always be in a more vulnerable position. This scenario of "his own business" is not without a precedent. I don't have any online references, but I remember a colleague telling me about a local business like that, a woodworking shop. It was owned by a very small trust set up by the parents. The person with the mental disability loved anything to do with wood. He was hired, together with a trusted and skilled local worker a generation younger than the parents. This man slowly built a significant partial ownership stake that tied him to the business. The firm was well known and respected in and around the village where it worked.
BorisMelnik 12y ago
very touching young story - I bet this kid is a lot of fun to work with. The fact that he was on time every day for 6 months probably whips all the other employees into shape from an HR perspective. "If this kid can be on time and take the bus, then so can you."
personlurking 12y ago
If anyone is interested in a good film about a young man with Down Syndrome and how he gets on in life (work and love), check out the Spanish film Yo Tambien (Me Too). Here's the trailer, with subs. https://www.youtube.com/watch?v=-3CfN3Rrvi4 https://www.youtube.com/watch?v=-3CfN3Rrvi4
pling 12y ago
Not downs, but we had a guy with a pretty bad speech impediment interview with us a while back. He had a well controlled stutter which resulted in pauses of 10s+. The guy was awesome (better than the average across our team) and had wonderful written communication skills. That's all we need as we email each other all day (we're a very disparate team). Unfortunately my asshat boss decided that he wasn't suitable for the position due to a number of made up concerns and vetoed our acceptance. Pisses me off every time I think about it but that's how a lot of companies operate.
- girvo 12y ago
  God damn, I would've been so furious at that. I'm young and have been known to make irrational decisions at times and don't have many responsibilities, and I don't know I could've stopped myself quitting (though I'm not having a go at you for staying!). That's such a big red flag to me :(
  - pling 12y ago
    It is to me too. There are ways to make everyone a winner than the asshat though. Karma was served here. The individual in question got a referral from me to another position, got a call and a job with a golden handshake and I got a £500 referral fee from the agent, which was spent on a nice new oscilloscope (an essential part of my exit strategy). He won because he got a job at a better company and cash. I won because I got a rep with the agent, £500 in cash and two steps closer to the door. Asshat lost because we still haven't found someone for his position and they're two steps closer to finding a replacement for me as well :)
    - girvo 12y ago
      Now that is an excellent outcome! :)
mike_h 12y ago
Would something like a google glass app, or another semi-automated assistant work for augmenting his capabilities? Sounds like he's totally motivated and capable to do e.g. the janitorial work, but his capability needs to be paired with intensive supervision. Could that supervision be implemented as wearable interactive instruction or cheat-sheets?
- user24 12y ago
  I can see occulus rift being more suited to this than glass.
- EnderMB 12y ago
  When I first saw Google Glass, my first thoughts weren't of how it could be used to improve my life, but how it could be used to improve the lives of those with behavioural problems and/or disabilities. While a lot of people think Glass will be largely underwhelming I sincerely hope that it becomes an essential tool for helping people feel more comfortable with integrating into society. If a tool like Glass can accomplish this then I think Google can call the project a success.
  - jordan0day 12y ago
    I'm a bit ashamed that a similar thought never occurred to me (that is, using something like glass for helping people with disabilities, instead of just recording first-person views of roller coaster rides). I can totally see the usefulness of an always-on helper that can provide helpful cues, to, say, autistic children who have trouble identifying social or emotional context in certain situations.
    - zacinbusiness 12y ago
      I can see value here. Personally, I find it extremely difficult to pick up on non-verbal cues. Often someone will make a statement or ask a question that's primarily meant as normal social conversation "Got any plans for Memorial Day?" And it will confuse me more than it should. (Why are they asking me this? What good will it do for them to know? Do I have any plans? I'm going to look over some things for work but I don't think I'm supposed to talk about that. Oh shit, I never sent in that report, I better do that when I get home. I wonder if I can do it now, if my laptop is still on I can just connect through Screens. I need to set up wake-on-lan this weekend. Did I let the dogs out? What were they saying? Why are they staring at me. Better make a run for it!) I don't know if this sort of tech would help me or not, but it'd be worth a shot to be able to dial my social awkwardness down to a 10 and even better if it could help people with real disabilities.
dougjordan 12y ago
I took french class with Jamie back in high school. He is a great guy, and works incredibly hard. I loved working in groups with him; his french was much better than mine.
- sdrothrock 12y ago
  Do you know how well he's able to use a computer? It could potentially be rewarding (both monetarily and intellectually) for him to be able to find things he's interested in on Mechanical Turk or Fiverr. Perhaps he could also start a blog to talk about the things he's interested in. The more publicity he gets, the more likely it is that he would be "found" by someone who has a niche that he would fit into.
jeremyperson 12y ago
Reminds me of these videos which I think HN will enjoy. Meet Anthony -> https://www.youtube.com/watch?v=Yv5nzgrYBIQ https://www.youtube.com/watch?v=Yv5nzgrYBIQ and Tim's Place -> https://www.youtube.com/watch?v=y6He0FWoFj0 https://www.youtube.com/watch?v=y6He0FWoFj0
rcthompson 12y ago
It's difficult to imagine how hard it must be the be mentally handicapped yet fully aware of that fact.
weinzierl 12y ago
In Germany another young man with Down syndrome is currently much talked and written about. It is about eleven year old Henri who took part in a model experiment to attended regular school classes. Now that some of his classmates are about to go to high school, his parents try to get him also into high school. Their reasoning is that it would be cruel and against the idea of the original experiment to separate him from his friends again. They don't argue that does not have the abilities to graduate. The whole argument is if a high schools should accept someone for other reasons than graduating. The following article is not very good, but the only one I could find in English: http://international.sueddeutsche.de/post/82661462300/a-touch-of-elitism-in-german-school-policy-for-the http://international.sueddeutsche.de/post/82661462300/a-touc... Much better one, but in German: http://www.spiegel.de/schulspiegel/junge-mit-down-syndrom-henri-darf-nicht-aufs-gymnasium-wechseln-a-969836.html http://www.spiegel.de/schulspiegel/junge-mit-down-syndrom-he...
- maccard 12y ago
  I'm currently working as a tutor in a center for gifted (high intelligence) children. Along with this intelligence, in many cases comes some mental difficulties. As an instructor in this environment, it is actually very difficult to deal with some children who are unable to interpret what I am saying to them. Not only does the child get frustrated when I don't understand what they're trying to tell me, but I get frustrated sometimes when I can't handle the situation, and the other students pick up on my frustration. The net result is that everyone loses out. These students are commonly known as special needs students, and I think this very accurately represents them. Some of the children require just a few minutes extra attention, others require regular confirmation, and others require practically no extra care other than being aware of some issue. I have never personally had to deal with a student with Down's Syndrome, however I know of some family friends with children who have Down's Syndrome. If you have seen and talked to these parents, in very many cases these parents have to dedicate their lives to caring for these children. The same is true for many cases in students; If I as a teacher have two students that require constant attention (for whatever reason) that means the rest of the students don't get the attention they deserve, and the two students I am dealing with don't get the help they deserve either. I don't know what the best solution is here, but I can't see having a large number of (excuse the wording, I can't think of a better word) difficult students such as those with aspergers/autism, Down's Syndrome etc. being a good one. The only point I can make on it is that in most cases, the transition to high school involves classes being split, and separation from friends. If students such as Henri can be sent to the same school as their friends, but possibly separated from others (which is what happens currently; students with severe mental difficulties are sent to separate schools) they can receive the individual attention and care that they deserve, but still be in the same environment as their friends and companions. I tried to be very careful with my wording here, and I apologise if I insulted anyone, it was not my intention.
digitalengineer 12y ago
I enjoyed reading this article, strangely enough by Aljazeera. That did made me want to know how a child like this would grow up in the Middle East. I found this: http://media-dis-n-dat.blogspot.nl/2009/03/saudi-mother-tries-to-break-silence.html http://media-dis-n-dat.blogspot.nl/2009/03/saudi-mother-trie...
- ecopoesis 12y ago
  Why is it strange coming from Al Jazeera? Would you think it strange if it came from the BBC or Der Spiegel? Despite what many in the US believe, Al Jazerra isn't the mouthpiece of terrorists or Qatar's propaganda machine, they're mostly just a very good news source.
  - kristofferR 12y ago
    Yeah, they're actually too good. Americans (in general) don't want real news, they want to be entertained. Al Jazeera America is a fantastic product, but unfortunately not a product in sufficient demand. When you combine that fact with the racism because of the name, its future doesn't look too bright. :(
    - piokuc 12y ago
      I also find Al Jazeera pretty good. It's definitely good that we have multiple sources of information. As far as Al Jazeera'a future is concerned, I wouldn't worry that it's not so popular in US, I think its future doesn't depend on that, they are well funded by the House of Thani, see the Wikipedia page http://en.wikipedia.org/wiki/Al_Jazeera http://en.wikipedia.org/wiki/Al_Jazeera
  - digitalengineer 12y ago
    Yes, good news for sure. They're eager to show another view from inside countries. Often a troublesome view. (A view the mainstream media often neglect). It does make me wonder: Would they be allowed to show the same view of Quatar, their owner?
zilian 12y ago
Very interesting and moving article. I was surprised by his incredible self-awareness and self-acceptance. Now it makes me wonder about all the reasons why you can't fit in our busier-than-ever society. Why bother trying joining the workforce when it's already broken for most of us? Maybe he could learn to grow his own food, learn to make things at his own pace and become more 'independent' while doing so?
Suncho 12y ago
I found this article disturbing. Why are we forcing developmentally disabled people -- or anyone, for that matter -- to get jobs? Is there a dire shortage of low-skilled labor that I'm not aware of? "Whenever we talked about his employment prospects after the age of 21, we reminded Jamie that he did not want to live a life of watching YouTube, wrestling videos and Beatles Anthology DVDs in the basement." Would there have been anything wrong with watching YouTube videos all day if Jamie's father had never told him that it was wrong? And if the purpose of sheltered workshops is to provide busy work for developmentally disabled people, why should it matter whether they pay below minimum wage?
- DanBC 12y ago
  We are not forcing people to get jobs. We are allowing them to get jobs if they wish. Work has some stron benefits - social activity; economic activity; independance. These spread into health benefits (exercise, mental health resiliance) and also strongly reduce the risk of abuse. Watching yourube videos all day is not what most people want to do. It would have been a problem for the person doing it, but also a problem for the people looking after him. I really do not understand what point you're trying to make. This young man wants to be part of society. It's easy to say that his mental capacity is the problem, but perhaps it is our attitudes to his capacity that are the greater problem. He might not ever be a marine biologist, but he could certainly help at aquariums. For many years people have left people with learning disabilities to rot. Look at the mortality for people with LD we see unacceptably poor rates for things not connected to their LD, caused by things like doctors making excessive use of DNR for people with LD, or even just people not keeping dental hygiene up to date. I'm trying to be polite here, and I want to ask a quesion hat I realise might sound very rude. Please, I am not attacking you. I am involved in work on stigma and I am genuinely curious. Do you feel as if your comment is stigmatising at all?
  - Suncho 12y ago
    I did not intend my comment to be stigmatizing. But I do feel that one of the most degrading aspects of our society is the expectation that people have to earn a living by working at some kind of job. Especially in an economy where we're continually striving to save labor, employment is becoming an unrealistic expectation for lots of people, not just those with learning disabilities. Personally, I do not have a job and I'm looking forward to a future in which more people have the freedom not to work without being shamed by their loved ones or by society.
bayesianhorse 12y ago
Maybe in Taxonomy? Taxonomists are scientists who can catalogue specimens of animals and plants into species, and argue about what is a species and what is two species. However, he might be quite good at learning to classify specimens and classifying them. Not in the more academic/scientific role, but it would be valuable work. He might even be able to discover things about taxonomy nobody else has found yet.
- goatforce5 12y ago
  I bet he'd be super good working in a library.
lazyant 12y ago
I talk to myself, ha what's the problem with that
thehme 12y ago
I really respect the humanity with which this story is told; kudos to the dad, and Jamie, of course. This heartfelt story makes you realize how little we know about people with mental handicaps and the struggles they face, even is the best of circumstances. It only saddens me to think that similar children/young adults/adults out there, do not have the access to some of these programs because of they do not have such resourceful parents.
duffdevice 12y ago
Dolphins aren't pinnipeds. Just sayin'
- autechr3 12y ago
  For completeness of this correction, they are Cetaceans.
  - duffdevice 12y ago
    Knowledgeable and cool user name. Approved.

391 points by mr_tyzic 12y ago

I was afraid that this would be a tacky post hinging around hiring a guy solely because of his disability (i.e., charity) and instead it's a really thoughtful, insightful post about what it's like as a father of a young man with a disability and how hard it can be for people with disabilities to get hired. One thing I wonder (and I don't know if the author comes here): is there no Office of Vocational Rehabilitation or something similar? The author mentions Penn State and I know Pennsylvania has an OVR, even though it can be very hard to communicate with them sometimes. I had this problem when I was younger and had just gotten a cochlear implant. I always fretted about whether or not I would be able to get a job somewhere since I couldn't hear in moderately noisy environments (think fast food, movie theaters), couldn't use the telephone, and sometimes had difficulty understanding people I'd never met before. It was really scary thinking that I would have to live with my mother for the rest of my life, unable to get a job. Being rejected from all of the entry-level jobs I applied to at the time only made my fears worse. I found some good jobs and have a great one now, but I feel for this young man.

GuiA 12y ago

I worked with mentally handicapped kids a lot as an educator when I was younger (albeit in a different country). This wonderful article captures perfectly how, in the right environment, children with Down Syndrome can blossom, but how hard it can be for them as adults once society & red tape & bureaucracy all come into play. (I also worked with children who had Down Syndrome and had not grown up in the right environment- think abusive/dead/incarcerated/etc. parents. That got very depressing very fast, and I'm not sure I could do it again). I think this also highlights how the increasingly geographically fragmented familial unit is problematic: in a culture where several generations of the same family lives under the same roof, the situation wouldn't be as dire. However, in our culture it is typical to have only small portions of a family living together, and for children to move away and live on their own, potentially hundreds of miles away. No situation is perfect, of course - but it's still something to ponder (and it affects other social groups as well, for instance the elderly). There was a wonderful American Life a while back on a similar topic, about a mother dealing with her adult son who had a mental disability (can't remember if it was autism or Down), and fearing for what would happen once she passed away. Can't find it right now; will edit this post if I do.

anshukla 12y ago
I believe you are referring to Season 2 Episode 1 of This American Life the tv show titled "Escape". Two sentence summary from the site: "Mike and his mom get caught up in a fight that lots of kids have with their parents. Except in their case, due to some very specialized circumstances, they go through the fight in slow motion, over the course of years." http://www.amazon.com/gp/product/B002V87A4S/ref=atv_feed_catalog?tag=imdb-amazonvideo-20 http://www.amazon.com/gp/product/B002V87A4S/ref=atv_feed_cat...
nhyun 12y ago
Is it Act One from the episode called Neighborhood Watch? "Reporter Ruth Padawer tells the story of a woman goes to her neighbors with an incredible request—to help care for her son after she dies—and is shocked by their response." http://www.thisamericanlife.org/radio-archives/episode/420/neighborhood-watch http://www.thisamericanlife.org/radio-archives/episode/420/n...
gadders 12y ago
There was a satirical article in the Onion that exposed a similar truth. I wish I could find it now but it was along the lines of "Learning Disabled Man is Only Decent Employee in Local Burger Bar". He was the only diligent employee and the rest were teenagers that couldn't give a shit.
- StefanKarpinski 12y ago
  http://www.theonion.com/articles/developmentally-disabled-burger-king-employee-only,462/ http://www.theonion.com/articles/developmentally-disabled-bu...
  - gadders 12y ago
    Thank you. Your Google skills beat mine ;-)
- ape4 12y ago
  I have seen this in real life.

hkmurakami 12y ago

I remember when I worked in an auto-industry factory (as part of my training) in Japan, we wore caps with colored bands that denoted rank/category. New employees were dark blue. Equipment/facility maintenance people wore yellow bands. "Management" inside the factory, as well as the white-collar employees had light blue. Outside guests wore red. Amidst this, workers with disabilities wore caps with green bands. Many were hearing impaired, but there were some with leg issues and others with some form of mental illnesses. This kind of categorization perhaps wouldn't fly in the States, but it seemed to aid the company's goal of having 5% of their factory workforce composed of people with various forms of disability (iirc). As knowledge workers, it's easy for us to dismiss bluecollar positions like these, but working at a enormous Toyota group company, receiving a great deal of training and a respectable wage (you can make quite a bit with overtime), and being part of something that produces countless goods into the world is a pretty good deal for people in a country where it's not illegal for potential employers to ask about your existing medical conditions during the interview process.

ekianjo 12y ago
> This kind of categorization perhaps wouldn't fly in the States I see this as a bit of a paradox in the States. There is always some discussion about how everyone should be treated as equal, yet your "race" (whatever that means in the age of genetics!) is recorded by the government, and minorities are tracked by employers even though this is absolutely not related with their skills. If i think too much about it, I'd call it madness.
- meric 12y ago
  And also levy high taxes on people to support the elderly through social security; the government reduces the ability for individual families to support its own elderly, because everyone's parents are equal.
- jwr 12y ago
  I also never understood this. Why ask about race if race is supposed not to matter?

caublestone 12y ago

I barely made it through this article. After the 10th minute of pushing through my tears to read, I had to resolve that nothing would stop me. On HN we dream big. And we all agree that we can dream big and maybe hit it big. Imagine what it feels like to realize at a young age that you DONT get to go after your dreams because you are missing the tools. Imagine what it feels like to believe something is wrong with you because you talk to yourself sometimes. Now get back to starting your company. And yet, you can be happy to commute, to have co workers, to have some freedom from our parents.

jvanstry 12y ago
I totally agree about the sadness that must accompany realizing you are "missing the tools" to follow your dreams. A wonderfully written account by his father, one which makes me hope I can be continually thankful for the gifts bestowed upon me going forward.

tatianajosephy 12y ago

I have a strong sense that online work - on CrowdFlower, Mechanical Turk, or Elance - could be the path forward for someone like Jaime. Please do note: I work for CrowdFlower. The beauty of online work is its promise of operating as a meritocracy. Access to the labor market is not about who you know, or how you appear, but about your ability to perform. Everything about Jaime, from his diligence to his incredible cataloguing memory, struck me as a perfect fit for the type of work that's readily available online: data collection, cleaning and labeling. Even better, this type of work is going to become a larger and larger part of labor market as the machine learning field grows and the need for clean training data grows along with it.

GuiA 12y ago
The problem is that this kind of work is very isolating, and from the article it seems that he really needs human interactions.
cbhl 12y ago
Online work solves the problem of not having something to do, but in some sense, going on YouTube also solves that problem. In my opinion, the value of work for someone like Jaime mostly revolves around the perception of independence (I can take the bus by myself) and the social interactions (having co-workers), and online work doesn't fulfill these as well. That Jamie has something to do and that there is useful economic output is a nice-to-have, and likely a subsidized one at that. I would not be surprised if, for example, Jamie's companions cost more ("contribute more to GDP", if you will) than Jamie earns in wages.
- markvdb 12y ago
  Why not get him an office? Either at the workplace for mentally disabled, or somewhere else. He might also be able to combine Mechanical Turk with physical work at the same place... Researching what someone with Down syndrome did 50 or 100 years ago might also be useful. Quite a few manual labour jobs have disappeared through automation. Looking at those jobs disappearing might also inspire. Looking at places where hand made/artsianal products or services command a premium might also help. Or why not set up a small business tailor made to him and the things he can do? Balancing between his autonomy as a person and maximising his economic output will always be a challenge, but I could see it being worth the effort. Mostly, it could offer him a long term perspective, while at a third party he would always be in a more vulnerable position. This scenario of "his own business" is not without a precedent. I don't have any online references, but I remember a colleague telling me about a local business like that, a woodworking shop. It was owned by a very small trust set up by the parents. The person with the mental disability loved anything to do with wood. He was hired, together with a trusted and skilled local worker a generation younger than the parents. This man slowly built a significant partial ownership stake that tied him to the business. The firm was well known and respected in and around the village where it worked.

BorisMelnik 12y ago

very touching young story - I bet this kid is a lot of fun to work with. The fact that he was on time every day for 6 months probably whips all the other employees into shape from an HR perspective. "If this kid can be on time and take the bus, then so can you."

personlurking 12y ago

If anyone is interested in a good film about a young man with Down Syndrome and how he gets on in life (work and love), check out the Spanish film Yo Tambien (Me Too). Here's the trailer, with subs. https://www.youtube.com/watch?v=-3CfN3Rrvi4 https://www.youtube.com/watch?v=-3CfN3Rrvi4

pling 12y ago

Not downs, but we had a guy with a pretty bad speech impediment interview with us a while back. He had a well controlled stutter which resulted in pauses of 10s+. The guy was awesome (better than the average across our team) and had wonderful written communication skills. That's all we need as we email each other all day (we're a very disparate team). Unfortunately my asshat boss decided that he wasn't suitable for the position due to a number of made up concerns and vetoed our acceptance. Pisses me off every time I think about it but that's how a lot of companies operate.

girvo 12y ago
God damn, I would've been so furious at that. I'm young and have been known to make irrational decisions at times and don't have many responsibilities, and I don't know I could've stopped myself quitting (though I'm not having a go at you for staying!). That's such a big red flag to me :(
- pling 12y ago
  It is to me too. There are ways to make everyone a winner than the asshat though. Karma was served here. The individual in question got a referral from me to another position, got a call and a job with a golden handshake and I got a £500 referral fee from the agent, which was spent on a nice new oscilloscope (an essential part of my exit strategy). He won because he got a job at a better company and cash. I won because I got a rep with the agent, £500 in cash and two steps closer to the door. Asshat lost because we still haven't found someone for his position and they're two steps closer to finding a replacement for me as well :)
  - girvo 12y ago
    Now that is an excellent outcome! :)

mike_h 12y ago

Would something like a google glass app, or another semi-automated assistant work for augmenting his capabilities? Sounds like he's totally motivated and capable to do e.g. the janitorial work, but his capability needs to be paired with intensive supervision. Could that supervision be implemented as wearable interactive instruction or cheat-sheets?

user24 12y ago
I can see occulus rift being more suited to this than glass.
EnderMB 12y ago
When I first saw Google Glass, my first thoughts weren't of how it could be used to improve my life, but how it could be used to improve the lives of those with behavioural problems and/or disabilities. While a lot of people think Glass will be largely underwhelming I sincerely hope that it becomes an essential tool for helping people feel more comfortable with integrating into society. If a tool like Glass can accomplish this then I think Google can call the project a success.
- jordan0day 12y ago
  I'm a bit ashamed that a similar thought never occurred to me (that is, using something like glass for helping people with disabilities, instead of just recording first-person views of roller coaster rides). I can totally see the usefulness of an always-on helper that can provide helpful cues, to, say, autistic children who have trouble identifying social or emotional context in certain situations.
  - zacinbusiness 12y ago
    I can see value here. Personally, I find it extremely difficult to pick up on non-verbal cues. Often someone will make a statement or ask a question that's primarily meant as normal social conversation "Got any plans for Memorial Day?" And it will confuse me more than it should. (Why are they asking me this? What good will it do for them to know? Do I have any plans? I'm going to look over some things for work but I don't think I'm supposed to talk about that. Oh shit, I never sent in that report, I better do that when I get home. I wonder if I can do it now, if my laptop is still on I can just connect through Screens. I need to set up wake-on-lan this weekend. Did I let the dogs out? What were they saying? Why are they staring at me. Better make a run for it!) I don't know if this sort of tech would help me or not, but it'd be worth a shot to be able to dial my social awkwardness down to a 10 and even better if it could help people with real disabilities.

dougjordan 12y ago

I took french class with Jamie back in high school. He is a great guy, and works incredibly hard. I loved working in groups with him; his french was much better than mine.

sdrothrock 12y ago
Do you know how well he's able to use a computer? It could potentially be rewarding (both monetarily and intellectually) for him to be able to find things he's interested in on Mechanical Turk or Fiverr. Perhaps he could also start a blog to talk about the things he's interested in. The more publicity he gets, the more likely it is that he would be "found" by someone who has a niche that he would fit into.

jeremyperson 12y ago

Reminds me of these videos which I think HN will enjoy. Meet Anthony -> https://www.youtube.com/watch?v=Yv5nzgrYBIQ https://www.youtube.com/watch?v=Yv5nzgrYBIQ and Tim's Place -> https://www.youtube.com/watch?v=y6He0FWoFj0 https://www.youtube.com/watch?v=y6He0FWoFj0

rcthompson 12y ago

It's difficult to imagine how hard it must be the be mentally handicapped yet fully aware of that fact.

weinzierl 12y ago

In Germany another young man with Down syndrome is currently much talked and written about. It is about eleven year old Henri who took part in a model experiment to attended regular school classes. Now that some of his classmates are about to go to high school, his parents try to get him also into high school. Their reasoning is that it would be cruel and against the idea of the original experiment to separate him from his friends again. They don't argue that does not have the abilities to graduate. The whole argument is if a high schools should accept someone for other reasons than graduating. The following article is not very good, but the only one I could find in English: http://international.sueddeutsche.de/post/82661462300/a-touch-of-elitism-in-german-school-policy-for-the http://international.sueddeutsche.de/post/82661462300/a-touc... Much better one, but in German: http://www.spiegel.de/schulspiegel/junge-mit-down-syndrom-henri-darf-nicht-aufs-gymnasium-wechseln-a-969836.html http://www.spiegel.de/schulspiegel/junge-mit-down-syndrom-he...

maccard 12y ago
I'm currently working as a tutor in a center for gifted (high intelligence) children. Along with this intelligence, in many cases comes some mental difficulties. As an instructor in this environment, it is actually very difficult to deal with some children who are unable to interpret what I am saying to them. Not only does the child get frustrated when I don't understand what they're trying to tell me, but I get frustrated sometimes when I can't handle the situation, and the other students pick up on my frustration. The net result is that everyone loses out. These students are commonly known as special needs students, and I think this very accurately represents them. Some of the children require just a few minutes extra attention, others require regular confirmation, and others require practically no extra care other than being aware of some issue. I have never personally had to deal with a student with Down's Syndrome, however I know of some family friends with children who have Down's Syndrome. If you have seen and talked to these parents, in very many cases these parents have to dedicate their lives to caring for these children. The same is true for many cases in students; If I as a teacher have two students that require constant attention (for whatever reason) that means the rest of the students don't get the attention they deserve, and the two students I am dealing with don't get the help they deserve either. I don't know what the best solution is here, but I can't see having a large number of (excuse the wording, I can't think of a better word) difficult students such as those with aspergers/autism, Down's Syndrome etc. being a good one. The only point I can make on it is that in most cases, the transition to high school involves classes being split, and separation from friends. If students such as Henri can be sent to the same school as their friends, but possibly separated from others (which is what happens currently; students with severe mental difficulties are sent to separate schools) they can receive the individual attention and care that they deserve, but still be in the same environment as their friends and companions. I tried to be very careful with my wording here, and I apologise if I insulted anyone, it was not my intention.

digitalengineer 12y ago

I enjoyed reading this article, strangely enough by Aljazeera. That did made me want to know how a child like this would grow up in the Middle East. I found this: http://media-dis-n-dat.blogspot.nl/2009/03/saudi-mother-tries-to-break-silence.html http://media-dis-n-dat.blogspot.nl/2009/03/saudi-mother-trie...

ecopoesis 12y ago
Why is it strange coming from Al Jazeera? Would you think it strange if it came from the BBC or Der Spiegel? Despite what many in the US believe, Al Jazerra isn't the mouthpiece of terrorists or Qatar's propaganda machine, they're mostly just a very good news source.
- kristofferR 12y ago
  Yeah, they're actually too good. Americans (in general) don't want real news, they want to be entertained. Al Jazeera America is a fantastic product, but unfortunately not a product in sufficient demand. When you combine that fact with the racism because of the name, its future doesn't look too bright. :(
  - piokuc 12y ago
    I also find Al Jazeera pretty good. It's definitely good that we have multiple sources of information. As far as Al Jazeera'a future is concerned, I wouldn't worry that it's not so popular in US, I think its future doesn't depend on that, they are well funded by the House of Thani, see the Wikipedia page http://en.wikipedia.org/wiki/Al_Jazeera http://en.wikipedia.org/wiki/Al_Jazeera
- digitalengineer 12y ago
  Yes, good news for sure. They're eager to show another view from inside countries. Often a troublesome view. (A view the mainstream media often neglect). It does make me wonder: Would they be allowed to show the same view of Quatar, their owner?

zilian 12y ago

Very interesting and moving article. I was surprised by his incredible self-awareness and self-acceptance. Now it makes me wonder about all the reasons why you can't fit in our busier-than-ever society. Why bother trying joining the workforce when it's already broken for most of us? Maybe he could learn to grow his own food, learn to make things at his own pace and become more 'independent' while doing so?

Suncho 12y ago

I found this article disturbing. Why are we forcing developmentally disabled people -- or anyone, for that matter -- to get jobs? Is there a dire shortage of low-skilled labor that I'm not aware of? "Whenever we talked about his employment prospects after the age of 21, we reminded Jamie that he did not want to live a life of watching YouTube, wrestling videos and Beatles Anthology DVDs in the basement." Would there have been anything wrong with watching YouTube videos all day if Jamie's father had never told him that it was wrong? And if the purpose of sheltered workshops is to provide busy work for developmentally disabled people, why should it matter whether they pay below minimum wage?

DanBC 12y ago
We are not forcing people to get jobs. We are allowing them to get jobs if they wish. Work has some stron benefits - social activity; economic activity; independance. These spread into health benefits (exercise, mental health resiliance) and also strongly reduce the risk of abuse. Watching yourube videos all day is not what most people want to do. It would have been a problem for the person doing it, but also a problem for the people looking after him. I really do not understand what point you're trying to make. This young man wants to be part of society. It's easy to say that his mental capacity is the problem, but perhaps it is our attitudes to his capacity that are the greater problem. He might not ever be a marine biologist, but he could certainly help at aquariums. For many years people have left people with learning disabilities to rot. Look at the mortality for people with LD we see unacceptably poor rates for things not connected to their LD, caused by things like doctors making excessive use of DNR for people with LD, or even just people not keeping dental hygiene up to date. I'm trying to be polite here, and I want to ask a quesion hat I realise might sound very rude. Please, I am not attacking you. I am involved in work on stigma and I am genuinely curious. Do you feel as if your comment is stigmatising at all?
- Suncho 12y ago
  I did not intend my comment to be stigmatizing. But I do feel that one of the most degrading aspects of our society is the expectation that people have to earn a living by working at some kind of job. Especially in an economy where we're continually striving to save labor, employment is becoming an unrealistic expectation for lots of people, not just those with learning disabilities. Personally, I do not have a job and I'm looking forward to a future in which more people have the freedom not to work without being shamed by their loved ones or by society.

bayesianhorse 12y ago

Maybe in Taxonomy? Taxonomists are scientists who can catalogue specimens of animals and plants into species, and argue about what is a species and what is two species. However, he might be quite good at learning to classify specimens and classifying them. Not in the more academic/scientific role, but it would be valuable work. He might even be able to discover things about taxonomy nobody else has found yet.

goatforce5 12y ago
I bet he'd be super good working in a library.

lazyant 12y ago

I talk to myself, ha what's the problem with that

thehme 12y ago

I really respect the humanity with which this story is told; kudos to the dad, and Jamie, of course. This heartfelt story makes you realize how little we know about people with mental handicaps and the struggles they face, even is the best of circumstances. It only saddens me to think that similar children/young adults/adults out there, do not have the access to some of these programs because of they do not have such resourceful parents.

duffdevice 12y ago

Dolphins aren't pinnipeds. Just sayin'

autechr3 12y ago
For completeness of this correction, they are Cetaceans.
- duffdevice 12y ago
  Knowledgeable and cool user name. Approved.