
For Hire: Dedicated Young Man With Down Syndrome - mr_tyzic
http://projects.aljazeera.com/2014/portrait-of-down-syndrome/index.html
======
GuiA
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.

~~~
gadders
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
[http://www.theonion.com/articles/developmentally-disabled-
bu...](http://www.theonion.com/articles/developmentally-disabled-burger-king-
employee-only,462/)

~~~
gadders
Thank you. Your Google skills beat mine ;-)

------
sdrothrock
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.

------
caublestone
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
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.

------
hkmurakami
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
> 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.

~~~
aragot
"Race"? In France it is forbidden to ask or record the religion or color of
skin. Thus, it is forbidden to make statistics about it. Of course it is not
the same about people with a handicap.

~~~
ekianjo
By the way, in Germany, they don't track your race, but they ask you for your
religion when you move there. And it's actually a trap ! If you answer that
you have any, suddenly you'll see a religion tax (deducted from your salary
every month) going to your religion of choice. In Germany is literally "pays"
to be agnostic.

~~~
JPKab
Lol. Why on earth do they do this?

~~~
innguest
Are you kidding me? This is a great idea and incredibly fair.

Why should non-believers fund churches with their tax money?

Believers should be responsible for funding their churches/temples/holy places
without relying on those who don't care.

~~~
mynewwork
I'm curious where you're from. In the US, the government being separate from
religion is a pretty big deal so having taxes going to churches at all would
seem strange.

The system in the US, for instance, isn't that non-believers fund churches
with their tax money, it's that no one funds churches with tax money at all,
members of the church donate directly to the church.

(Before someone comments, yes churches are often tax-exempt like other
charities and non-profits, but that is different from actually receiving money
from the government)

------
pling
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
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
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
Now _that_ is an excellent outcome! :)

------
weinzierl
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-touc...](http://international.sueddeutsche.de/post/82661462300/a-touch-
of-elitism-in-german-school-policy-for-the)

Much better one, but in German:

[http://www.spiegel.de/schulspiegel/junge-mit-down-syndrom-
he...](http://www.spiegel.de/schulspiegel/junge-mit-down-syndrom-henri-darf-
nicht-aufs-gymnasium-wechseln-a-969836.html)

~~~
maccard
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.

~~~
gokhan
My son (7) is gifted, his school has no program for children with special
needs, and he's having enormous problems in school with other children and his
teacher. Would you mind sharing some tricks to share with his teacher that
might help her handle my son better?

We told her to keep him occupied, send him for photocopies, give him some
extra tasks in class etc. but she doesn't want to do such things since my son
sometimes improvise things and messes up.

Sorry for thread hijacking.

~~~
FedRegister
Your son improvising and making mistakes is a good thing. Mistakes are what
cause us to learn. To make them in an environment with little downside is a
great way to grow as a person as opposed to making them in the real world
where you could get fired for them.

------
dougjordan
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
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.

------
mike_h
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?

~~~
EnderMB
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
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
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.

------
tatianajosephy
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.

~~~
cbhl
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
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.

------
digitalengineer
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-
trie...](http://media-dis-n-dat.blogspot.nl/2009/03/saudi-mother-tries-to-
break-silence.html)

~~~
ecopoesis
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.

~~~
digitalengineer
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?

~~~
ecopoesis
Though Al Jazeera claim's editorial independence, in reality it appears to not
exist, or they choose not to exercise it.

Apparently Al Jazeera's Arabic station has not covered the withdrawal of
ambassadors from Qatar because of Qatar's support of the Muslim Brotherhood:
[http://www.al-monitor.com/pulse/originals/2014/03/jazeera-
qa...](http://www.al-monitor.com/pulse/originals/2014/03/jazeera-qatar-media-
coverage-saudi-gcc.html)

------
personlurking
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)

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

------
thehme
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.

------
zilian
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?

------
bayesianhorse
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
I bet he'd be super good working in a library.

------
jeremyperson
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)

------
BorisMelnik
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."

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

------
duffdevice
Dolphins aren't pinnipeds. Just sayin'

~~~
autechr3
For completeness of this correction, they are Cetaceans.

~~~
duffdevice
Knowledgeable and cool user name. Approved.

------
Suncho
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
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
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.

