The gold standard community for persons with developmental disabilities | John Fahrenbach | TEDxLFHS

The gold standard community for persons with developmental disabilities | John Fahrenbach | TEDxLFHS


Translator: Brian Vuksanovich
Reviewer: Elisabeth Buffard When I first started
to plan out my talk here today, I knew that I want to hit upon two points, and that’s community and people
with developmental disabilities. And this is important to me
because over 50 years ago, my uncle Brian was born
and upon his birth, the soft spot in this head closed and his brain was literally
being pushed up against his skull, and he was going to die. A doctor stepped in, they removed a part of his skull in order to alleviate the swelling
and they saved his life. But there’s still some damage
done to the brain and from that moment onwards
he’s a small infant. My uncle Brian would never be able to live a fully a functioning
and independent life. That wouldn’t stop my grandparents from trying to give him a meaningful life, even though there weren’t facilities
for people like Brian back then, they were more than just
babysitting services that dealt in the fundamental needs. And it was hard at times, it really was! But my uncle Brian,
he learned how to skate, he learned how to ride a bike, he loved food, loved life, he wanted to be everyone’s friend and he brought my family close together. And hearing stories about that, about the path, seeing who he is now, and working with other people
with disabilities today, it has become a large part of who I am. It has taught me to give back, and that’s what I want
to do here today with this talk, bringing these two points together
and raising awareness. And so I started asking questions and I found out
that there’s a situation on the horizon. At this moment, my uncle Brian is one of 30,000 residents
within the state of Illinois. There’s a part
of a communal housing system for the developmentally disabled
and the care is getting better, which is a good thing,
they’re living happier healthier lives, But there’s a flip side to that: within the next twenty years, 30,000 more future residents
will outlive their parents, their primary caretakers, and be introduced
into the communal housing system. The thing is, we do not have
the housing capacity to take care of the current 30,000. Some facilities have over
a 20-year waiting list. And so a light bulb went off in my head
and I realized, maybe this is how I bring
these two points together, maybe this is how I give back. So I started to dig, I asked myself: “OK, we’re going to have more residents,
we need more communities.” So what is
the gold standard community? I toured facilities,
I talked to residents, I talked to volunteers, and I found out
the gold standard community deals with physical needs,
social needs and emotional needs, but even doing all that
in just a few weeks of work, it still didn’t feel like I had in my talk so I started to dig more, I started to look at how are we going
to make these facilities run. The only thing that you need is money,
and people who do it, but how are you going to get this money? You’re going to have to look at
government subsidies, private donations. How much is it going to cost you?
1.5 million dollars? 20 million dollars? How many hours
of volunteer services is that? And after doing all this work, all this time spent, all these weeks
asking all these questions, it still hadn’t felt like I understood
what I wanted to talk about. I didn’t still feel like I knew what was going to bring
these two points together, even though I was with these people
my entire life! I still didn’t know what I wanted
to talk about. So I stepped back, I went through my own experiences
with the disabled, and I fixated on a moment
just a few weeks ago. There’s a place not too far away, it’s a few minutes down the road actually,
called Lamb’s farm. It’s a communal housing system. And so I went there,
I toured it with my teacher, and as we were going
through the facilities, we came to the bakery. The bakery actually
has residents working there, people with real disabilities, who are functioning
to the best of their ability to give back. And we walked in there,
there’s a resident behind the counter, and when we saw her and she saw us,
her face lit up with joy. Without hesitation,
she walked up over to my teacher, hugged him, asked him what was his name, what did he do, why was he here, she wanted to be his friend. And then it hit me: when was the last time
that happened to me? I’m going to ask, when was the last time
that happened to you? To have your humanity
so highly regarded not by a stranger but by an acquaintance,
someone you know, a friend, to have someone
make you feel loved, feel wanted, like you’re part of something more,
on their own initiative. When was the last time
that happened to you at work? At the gym? At school?
On your own street? To know your part of a community, Can we really say
that we are part of a community if we’re surrounded by strangers? That’s when I realized
it wasn’t just about financing, it wasn’t just about funding, logistics, it wasn’t just about
what we can do for the disabled. It’s also about what they can teach us, what they can teach us about community, to be loved, to be wanted, to be needed, to not feel but know
you’re a part of something more. And I no longer see these coming 30,000 residents
as a problem. And through the process
of helping them find their humanity, we will rediscover
our own humanity as well. Thank you very much. (Applause)

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5 thoughts on “The gold standard community for persons with developmental disabilities | John Fahrenbach | TEDxLFHS”

  • As the son of a quadriplegic father and the father of a son with autism & developmental delay – THANK YOU. Your human compassion, perspective and words reflect the truth of what one can gain. While you bring forth the lack of a system that provides support or opportunity.

  • thank you.  As a parent of a 31 yr old autistic/intellectually disabled son, this is a constant struggle.  What will happen to him when I'm gone….

  • I love this John. Thank you for your inspired words. You are right! Wouldn't it be heaven to live in a place full of kindness and friendship, and the time to listen.