[ Silence ]
>> Hello and welcome.
My name is Jeanie Hoffman.
I'm one of the co-directors
for the Northwest Regional
spinal cord injury model system,
and I want to welcome
you tonight to our forum.
The forums, the recordings,
and all of our online media
content are made possible
by a grant from the National
Institute on Disability
and Rehabilitation Research.
And tonight we're pleased
to have four panelists
who we'll be talking
about different ways
that they have had experience
with advocacy from advocating
for themselves on a very
personal level to the transition
out into the community, to
talking about advocating
for larger causes and
improving the lives
of others locally
and nationally.
Each panelist will talk
for about 10 to 15 minutes
and give their background
and information.
We may follow up
with some questions,
but then we'll certainly
invite questions
from the audience at that point.
We'll also have time in
between each presenter
if you have specific
questions for that presenter.
So first I'd like to just do
an overview and ask each person
to actually introduce themselves
and just a brief
overview of your injury.
And then we'll get started.
So Todd would you mind
just introducing yourself
and just a brief overview?
>> Evening.
My name is Todd Stabelfeldt,
31 years old,
and I'm a complete
C4 quadriplegic due
to a gunshot in 1987.
 
>> Hi. My name is
Aditya, and I'm 27.
I had a motorcycle
accident, and I fractured C5.
And I'm incomplete.
>> My name is Tom Riedy.
I was injured on the
east coast back in 1998
in a non-diving board
related pool injury.
It was a bit shallow
due to the construction.
And I've done a lot of advocacy
work, and that's why I'm here.
 
>> I'm Bruce Hanson.
I suffered a C6 injury in
2001 in a skiing accident.
I'm 55 years old now.
 
And I'll be talking
about other stuff.
>> Alright.
So I want to just get started
and have Todd talk a little bit
about his self-advocacy.
>> Self-advocacy, that's sort
of a hard one to describe.
It's 31 years in the making I
guess, specifically the last 24
to 25 due to the injury.
Part of my story is I
guess understand a little
about how I grew up.
So I was injured at 8 years
old, second grade going
into third grade, and I did my
rehab at Children's Hospital.
That was in '87 and on into '88.
And the rehab back then
was just totally different.
I was in the hospital
for over a year.
And that was my home.
When I got home, was
home for maybe an hour,
and my mom told me
that she'd let me stay
in the home until I was 20.
So she gave me 2 years
of what she called grace.
And that was what she
considered tough love.
And so by the time
I was 20 I should be
on my own either full-time
student or in a career.
I took that to heart and ended
up leaving my parent's home
at 16 to pursue software
development as a trade.
I wanted to be a physician and
quickly realized and learned
at 16 that this great country is
not set up for disabled people
to have any sort of ambition.
And the response was I'm
either going to be on the state
for the rest of my life or I'm
not going to be on the state
at all, and with a C4
injury need to make a lot
of cash as fast as I can.
Just happened that
was the mid 90s
and this thing called
the internet was started.
And there was these
things called websites,
and ended up working
out in my favor.
And I ended up getting a job
just a few days after turning 18
with a software company.
That's where I've
been ever since.
So that's sort of
the big picture.
How do you do that?
How does that all work?
How does a company get together?
This has been sort
of my solution.
I look at my life as a series of
projects, and I am the manager
of that, which seems
probably sort of strange
to systematize my life,
but it works for me.
I sort of use the
Michael Gerber approach
to franchising a
business like McDonalds.
I just sort of franchised
my body, and thank you.
I appreciate the joke there.
It's okay to laugh
at a quadriplegic.
And so what I do is
very systematically look
at each component as its
own individual piece,
and then all combined
together it's sort of me.
And I feel that it's important
to always professionally conduct
myself in a way that articulates
to whoever my audience is,
whether that's a physician
in an ER that has no
idea what [inaudible] is
and does not understand
the next steps.
So being able to professionally
coach him, talk with him
in a way that would be allow him
to buy into my situation rather
than me using I'm
disabled, listen to me,
you don't know my
story type deal.
More of a, hey let's work on
this together as a solution
that will benefit
the both of us.
So I just take that
wherever I go.
Like I said, it doesn't really
matter if it's a clinic here
at the U or ER or trying
to find a job or trying
to resolve problems with family
friends or relationships.
I find for me typically coming
to the table if you will,
I got to sort of prove myself.
I don't know why people think
that disabled folks are
not all together mentally
or cognitively.
I feel like whenever I come to a
table with clients or what not,
I always have to be sort of be
the best dressed in the room.
I have to be able to speak
better than my counter parts
and be able to show them that
yes in fact I am disabled,
but I have a mind and it
works well, and I'm able
to use it to meet the needs.
And that's just a solution
that I have come up with.
I think it works really well.
I try to show other people
and teach other folks.
I don't know why most folks
in chairs end up having a sort
of interesting entitlement
and sort of you owe me.
In my philosophy nothing
was ever promised to us
and nobody ever said this Earth
suit was going to be easy.
And so for me, I try to do
what I think works for me,
and that is always
trying to have people buy
into my situation, my story,
and that we can work as a team
and that we can solve problems.
And that's sort of
the approach I've done
for the last several years.
Of course it's sort of
been under refinement.
Of course sometimes
you get really pissed
and don't feel very
good and it leaks
out a little bit
like anybody else.
We all have bad days.
When I teach third grade,
I do a lot of discussion
on approaching people, like
strangers and what not,
and that it's okay
to ask questions,
it's okay to be curious.
I'm not sure why we're
sort of taught to not be
that when we get older, but I
find that to be a great to sort
of motivate discussion,
and for folks
that are let's say strangers
in the mall to be able
to understand my situation
and for me to be able
to understand them too.
I guess for me you could sum up
my approach on almost everything
in life is a sort of
a professional, calm,
as best spoke as I can be,
and that I would like for you
to join me on this
adventure rather
than me tell you how
this is going to work.
The situation already
is odd and strange.
Here there's this quadriplegic
in ER, in rural America,
in Shelton, Washington, and the
docs that were seeing someone
with my situation, and I
know exactly what I need.
But how do we get
to that end goal?
And so tell me about
your story, doc.
Where did you go to school?
What do you like to do?
You know, that type of deal.
You get to a sort of
relational side of people,
which I think we all innately
have this desire to be
in relationship, to be able
to speak heart to heart
from different people, and
that's sort of my approach.
So far it's worked.
 
>> Can you talk a little bit
about your foundation and how
that came about with
your advocacy?
>> Absolutely.
So I started the Todd
Stabelfeldt Foundation a few
years ago, and it
specifically works
with occupational
therapists whether they're
in school or on the field.
And my desire and goal is to
create a social driven network
where C1 to C4 quads
work directly with OTs
to become the next standard
of usability guidelines
for the world.
And that's where I'm heading.
I think that's important.
It's sort of the idea,
let's say everybody here
in this room has a cell phone
and it has a speech recognition
application probably made
by a company called Voice
Signals which is owned
by Nuance, which
makes Dragon Dictate.
We've all probably
heard of that.
Why don't we recognize speech
rec for the quadriplegic?
I know that answer.
If it's designed for
the quadriplegic,
it'll work for everybody.
That's our life, right?
And then you've got
to show these people
that it's the bottom
line really.
It's how business and
people move forward.
So if we can design
the speech rec app
for the quad slightly tooled
and designed, now you can take
over the automative world
because everyone wants to talk
on their phone by
pressing a button
on the rearview mirror,
whatever it is.
So that's my goal using OTs
and other high level quads
to basically change the world.
That's where I'm going.
And for UC5 and lower
quads, sorry guys.
I got no interest in that.
>> Aditya, why don't
you tell us a little bit
about the advocacy
you've done from going
out into the community and that
transition and back into school.
>> Sure. So like I said I got
injured in a motorcycle accident
in New York, and I was 19 at the
time living at a friend's house.
I had no family there.
My parents are deceased.
So I was living at
my friend's house
and didn't have a social
network there besides friends.
And my uncle and aunt
were living out there
in Seattle on sabbatical.
They offered to have
me come out here.
So I came out here as soon as I
could, did the rest of my rehab,
and it was during rehab when
PTs, OTs, doctors, and nurses,
especially one nurse
in particular my primary nurse
then, emphasized the role
of advocacy in probably the
most important part of someone
with a physical disability
that significantly impacts
their daily functions.
And that is just
directing their care, right.
So back then there were a lot
more things that I couldn't do.
I wasn't moving my
arms very well,
and therefore I needed help
with pretty much every
aspect of my day.
And if you can't, like Todd
said, articulate how you want
to do this, how you
would like it to be done,
it's not only a comfort issue
or maybe a preference issue,
because those things
will become frustrating
and a little bit annoying when
something isn't done your way.
But that's not a big deal.
It becomes a big deal when you
need to advocate for yourself
when something is wrong.
For example to put on
your jacket the right way
so there's no wrinkles or to
put on to walk you through sort
of speak a situation
where you're having a medical
emergency, like you're in an ER
for example, and the
doctors there haven't heard
of dysreflexia since med school.
So these type of things were,
these type of things were
really important learning tool
to demonstrate how important
directing your care was.
Now after that, my advocacy was
so personal I needed to move
out of the hospital because,
like Todd said, hospital stays
for people with spinal
cord injuries,
especially higher
level injuries,
have gotten dramatically
shorter from over a year
to a few months to
several weeks now.
And that's partially due to
insurance and other factors,
but the point is you need
to, most people usually go
to their families if they
have a good family structure.
Or if not they go to
whatever they can find.
And in my case that was
temporarily a nursing home.
Unfun. I don't recommend it.
So that was only for two
weeks, but just getting
in the nursing home
was difficult enough.
And fortunately I had a
team of people helping me.
I wasn't doing this all alone.
I had an aunt and uncle who
were doing what they could
and social workers, case
workers, but once you get
in there then the next
thing you immediately think
of is how the hell do I get out.
So getting into a group
home was my next challenge.
A group home, an
adult family home,
is a home that has several
individuals, more than two,
that require some level of care.
So in order to find these
homes, you had to do networking,
calling, finding out
whether they would be able
to meet your level of care.
Whether they'd be able
to help you out with all
that you needed during the day.
So this was a lot of things.
This was a lot to think
about while I was still
basically recovering.
And so fortunately I had help
there too, but I had to go
to a few different group homes
because one just
didn't work out.
The other one had
problems with the state.
And so it was a continual
process, and it turns
into a situation, a skill of
necessity because most of us
up here probably didn't
learn to be advocates just
because we liked doing it.
At least I didn't in my case.
I did it because you
need to get stuff done.
You need to be looking
out for your health.
You need to find
a place to live.
So all of these things prompted
to become more outgoing.
I was introverted when
I was in high school.
I wasn't very good at speaking
with people, so all of this kind
of changed my personality.
From there, from the group home,
the next big hurdle was getting
into an independent situation,
which was fairly
serendipitous for me.
I had a nurse delegator at
my group home who was friends
with another nurse
who was friends
with a mom whose son
was a quadriplegic.
And so the mom, Susanne, asked
me whether I'd like to come
over sometime just to hang out.
And they said, well we have
an extra room and you can move
in with us if you'd like.
It'll be great to have the
social structure setup,
social support.
Great, I found a place to live.
Easy, right?
Well, no, because state
bureaucracy is wonderful,
and in order to maneuver
through that you have
to be pretty resilient
and flexible and realize
that it's not just
difficult individuals
that are in these positions.
Maybe social workers or
different administrative folks,
but there's lots of
institutional factors
that whenever you're advocating
for yourself or on behalf
of someone else will tend
to limit how much you can
do through that channel.
So not taking no for an answer
is a very good trait to have,
and it's difficult sometimes.
And when you're advocating
for yourself, more easy to do
that when it's on
behalf of someone.
So finally we make calls.
I called in [inaudible]
put enough pressure,
found a caseworker that
was in King County.
I was in [inaudible] so
facilitated the move.
And long story short, I
finally got into the new place,
and soon after started school
again because I wasn't going
to be able to go to
school from a group home.
It's just not cool.
Just not going to happen.
Yeah. So after that I
guess, yeah, that was most
of the personal advocacy I did.
And like I said being flexible
and persistent those were two
really good traits to have.
Persistency is probably the most
important when you're advocating
for yourself in situations
like this.
 
>> Any questions for
Aditya at this point?
Alright. Good.
>> Steve.
>> Things like the network
really worked for you,
that you were kind of shy before
but you rose to the occasion.
Can you talk about how
you achieved coming
out with the strength
of your personality
in developing your network?
>> Drugs. Drugs and booze.
No.
[ Laughter ]
No. It was slow in the
hospital in my room up on north,
I didn't want to leave ever.
I think some smart PTs
sent in a cute looking PT
and finally got me to
leave and go and drive
around the hospital, but
really I didn't want to go
because I was in a lot of
pain and I was kind of grumpy
and just wanted to
be left alone.
And it changed from that little
by little to the realization
that no one else is going
to, you can't do a lot
of stuff yourself anymore.
Like just coming
over that hurdle
of denial was a big
factor for me.
And once you realize you can't
do that, you're going to need
to find someone that is willing
to help you, which there's more
than enough people here
in Seattle especially.
And after, you just
learn to talk
to people better,
learn to relate.
Like Todd said, turn
it into a situation
where you're not just
demanding help from someone,
but you need assistance
with something,
and you're making a
plea to work for you.
>> I'm Bruce Hanson,
and like I said earlier,
I have a C6 spinal cord injury
from a skiing accident in 2001.
And yeah I've done
a lot of advocacy
for myself and for other things.
It took me, I am
ambulatory, and it took me,
I spent really four
years of work to get
to the point where I can work.
And that has led me, I present
serve as the chair of the board
of directors of Pushing
Boundaries, which is non-profit
that does exercise therapy
for people with paralysis.
But that's not what I'm
here to talk about directly.
I've done legislative
advocacy in Olympia
and in Washington D.C.
And that starts in 2002.
I worked on the campaign for
a local woman in my district
who is running for
the state house
of representatives, and she won.
And at the same time I
had been, I'd been hooked
up with some people that
I met through Care Cure,
the Care Cure website.
Are people familiar
with that here?
It's an interesting
website to say the least.
I found just some immensely
really useful information there.
There's s also some pretty
bizarre information there,
but that's also another story.
I met people who are doing
something called Quest
for the Cure.
And this was a group of people
in states across the country
who were trying to get bills
passed since roughly half
of spinal cord injuries come
from motor vehicle accidents.
They were pushing to get
tickets surcharge added
to motor vehicle moving
violations to be applied
to spin cord injury research.
And there are some states
that were actually successful
in the 90s and early 2000s.
One in particular is Kentucky,
and the University of Louisville
in particular has some really
amazing things going on because
of the money they've been
raising through that.
New York is another one.
California.
Unfortunately things, we
got a bill introduced.
I guess it seemed cool.
Oh, we've got a bill.
This is a good cause
and it'll pass.
Well, it, it died in
committee, and that's actually,
that's what happens to most
bills that get introduced
in both the state legislature
and in Washington D.C.
But it was at least the
beginning for me to learn
about going to meet with
these people, and legislators
and their staff love to
hear from constituents
and love to meet people.
And it's really,
sometimes it seems daunting,
like they're in an ivory tower.
But they are approachable, and
they do want to hear from us.
Through that process, I got
hooked up with some other folks.
One particular woman from the
Juvenile Diabetes Foundation,
who were advocating in
Olympia about some bills
for stem cell foundation
in Washington state.
And I testified at a
number of committee hearings
about that topic, and also
spent time down in Olympia going
from legislature office to
legislature office just talking
to some of the people there.
And that was also, that was an
interesting experience as well.
I think one of the things
I learned about that is
to really know not just
what you're going to say
but what people who oppose
your, what their arguments are
and how to counter them.
I had one time I testified
before the state senate,
and after I had gone and
maybe a few other people
who were pro stem cell research,
and I very much support it.
One of the other state senators
came in and she had brought
in a ringer from California,
a physician who told
this crazy story about,
really wrenching story about
her daughter who was born
with a congenital issue and died
an awful death at 18 months.
And she's telling the story,
and then she said something
to the effect of this.
I equate the life of my daughter
to be the same as the life
of every embryo, and maybe there
are, to me it was really hard
to listen to that because
that is not how I listen
to the world.
I also talked to somebody else
who had referred to somebody,
another person I know,
who had been to Portugal
for some treatment
with a doctor there
who was implanting olfactory
cells in people's spinal cords.
And this person misrepresented
this other person's experience
quite significantly.
So it really helps to know,
and maybe in those cases
there wasn't much I could do,
but the final area
I want to talk
about was my experience going
to Washington D.C. advocating
for a bill called the
Christopher & Dana Reeve
Paralysis Act.
And it, I forgot when it was, It
was introduced first in Congress
around 2000, and it
would be introduced
and it would languish, and
it would then be reintroduced
for the next session
and languish.
And some folks, three
women who met on Care Cure,
two with spinal cord injuries
and a third who had a son
with a spinal cord injuries,
decided that they were going
to do some grass roots advocacy.
The Christopher Reeves
foundation was sponsoring this
bill and helping
to lobby for it,
but they weren't really
doing much grassroots work.
So they organized a
rally in Washington D.C.
and they also organized a
science symposium called working
to lock.
I'm going to talk
about that a bit more.
But I didn't go to the first
one of those, but I did go
to the second one with
my wife Kate here.
We traveled there, and we went.
Part of the time
we spent we went
around Capitol Hill visiting
our Senator Murray's office,
Senator Cantwell's office,
and we live on the east side,
Representative Rieckhert's
office.
And that again was really,
really cool experience
to go there and be
in those halls.
I am ambulatory, but when I was
there I can't walk that far.
I was wheeling, so wheeling
around these big halls
and these big office
buildings talking
to these folks was
really amazing.
I wanted to talk particularly
about our experience
with Senator Cantwell, because
the first time we went there we
went and met with
her healthcare aid.
And this person really
didn't seem too friendly,
didn't really want
to talk to us,
and didn't really know
anything about the bill.
We'd been to Senator
Murray's office,
and Senator Murray was a
co-sponsor of the bill.
Her aid knew about it,
and it was really
interesting to talk to them.
We went to Senator Cantwell's
office, and it just didn't,
so we went and just
started talking.
This is what the bill
is, and this is why,
and she raised some
objections and all that.
We had some answers, but
the next year we went
and she had a different
aid who turned
out to be much more
knowledgeable, and he did know
about this bill and did
spend time talking with us
and asking questions
and raising objections.
And we still asked
Senator Cantwell
to sign on as a co-sponsor.
She was not a co-sponsor.
The third year, I
actually did not go there.
Kate did. I was unable to travel
there, but while that was going
on there I said well
I'm here what can I do.
I can pick up and call
these people on the phone.
So I did that.
Then I also sent out
to everybody I knew
and my email list
some talking points.
Senator Cantwell
we were targeting
to get more co-sponsors
to this bill
to get it pushed
through the Senate.
There was one senator who put
an anonymous hold on the bill,
so it was like bound up.
So we were getting
more co-sponsors.
Senator Cantwell still
hadn't signed on.
So we call, I send it out
to my whole email list
and include some folks
who were older and retired
and had some time
on their hands.
And a number of them
called and spoke to them
and told me specifically
they had done that.
Anyway about two weeks later
Senator Cantwell signed
on as a co-sponsor.
And then early 2009 it
passed through the Senate
and through the House
and President Obama
signed it in March of 2009.
The bill that helps
support paralysis research,
paralysis rehabilitation and
care, clinical trials networks,
quality of life, and I think
in particular clinical
trials are really important.
You may have heard that
yesterday a person in I believe
in Atlanta was treated
with embryonic stem cells,
a person with a spinal
cord injury
in really the first
clinical trial of this sort
of thing in the United States.
And that's really very cool.
And getting something
from the laboratory
to clinical trials
is really difficult.
Finally I want to close.
I mentioned this
conference working to walk.
It's now left Washington D.C.
Last year it was in Chicago,
and this year in November
it's going to be in Phoenix.
I've got some cards about it
here that are on the table.
A couple cards.
One with general
information and some
with more specific
information about the schedule.
But if you're interested,
there's going
to be some scientists there
including Dr. Phil Horner
from the University of
Washington, Dr. Wise Young
from Rutgers, Douglas Curr from
the Miami Project, Steven Davies
from the University of Colorado.
A panel of people both from
academic research as well
as from drug companies
and other places,
Geron hopefully, Ed
Worth from Geron.
Yeah, Ed Worth the president of
Geron who is running this trial
that started yesterday.
It's an amazing experience to
meet and talk to these people
and learn what they're doing.
And also to meet other
people who are advocating
for spinal cord injury research.
So that covers what
I want to say.
>> After my injury I guess
the first two weeks were spent
trying to decide, and I think I
took a line from a movie here.
It's either get busy
living or get busy dying
because not everybody can
deal with the situation.
Most of the people in my
personal life pretty much came
and said I don't
know how you do it.
I couldn't do it.
And some people are built to
be able to do certain things
with life, especially a
life changing situation
like this, and some cant.
So I consider my background,
military, business, education,
everything kind of honed
me for doing what I do
and for my emotional state, for
capability, different things.
I think that you have to use
the skillset that you're given.
I learned one thing actually
from all people I never would've
thought I'd learn anything
from was Rush Limbaugh,
if anybody knows him.
[ Laughter ]
He is a very articulate
person, and I learned a bit
about vocabulary and
articulating, how to speak
to people, how to
listen to people.
And then that helps as well.
So anyway, after
the first two weeks,
I was just like a
sponge I guess.
I couldn't learn enough,
couldn't learn fast enough.
And I wanted to give back.
I'd spent so many years
maybe I would've liked
to change my marriage, the way
I conducted myself, whatever.
I felt that now I had some time
to try to pass along some things
that I'd learned in life.
Maybe do some injury prevention
speaking, things like that.
And after I'd learned enough and
thought it was something I could
and moved on and started with
a group called Think First,
which some of you may
remember from back
in the day that's
no longer with us.
They trained us to be at
first associate speakers.
You write your story.
You'd have a time constraint
very much as we have tonight.
You tell your story,
strong points, what you did,
how you overcame it,
what you are able to do,
what you do now,
things like that.
Then you at some point
graduate through matriculation
on to a lead speaker role.
And you coordinate
a little bit more
with the facility you'll be
speaking at with the associate
that you'd be working
with and what not.
And I guess that's
where I got my start.
I find that in a day to
day approach you have
to have a sense of humor.
You have to articulate
your needs.
You have to speak
audibly as best you can
and approach most
situations with sugar
as opposed to vinegar.
A lot of people will feed
you back the same thing you
feed them.
I don't know if the
person that I'm
about to approach
has had a fight
with their significant
other this morning.
I don't want to intensify that
and make my situation worse.
So I'm going to try to approach
it in a positive light in hopes
that will come back to me.
In some cases it does.
In some cases it doesn't.
But either you might be
improving someone else's day,
but you wouldn't want
your day started that way.
So you probably don't want
to do it to someone else.
I also work for a sound
transit advisory board.
When they first started
conducting surveys of putting
in the heavy rail as far as the
rail stops and different ways
of accessibility and that
regard, I did some work
with King County
advisory board specific
to park lake homes
in south Seattle.
I don't know if anybody
is familiar.
They tore down the old
military barracks, Rat City,
that kind of thing, and
built some new housing.
I was on a board that we went
through the community needs
and aspects of ADA and
requirements for housing people
with disabilities,
elderly, etcetera.
I was a PBA advocacy
director for about a year,
year and a half, until
I moved overseas.
I lived in the Philippines for
four years in this situation.
By the way, not a disclaimer,
a late fact I forgot
to bring it up, I'm
a C5 quad complete.
I missed that earlier.
And I did a lot of work with the
VA with the PBA advocacy issue.
A lot of complaints, things
people didn't know how
to deal with, they were facing
with the hospital they
didn't think was fair.
I get information, get feedback
from the board, whatever,
and we'd approach
it accordingly.
Spent a lot of time in
metro public hearings going
to advocate for not raising the
fares for disability people,
elderly, different aspects.
I can't think of everything
that comes to mind.
Connected with a Think
First, go back to that.
I'm sorry I'm a little
disorganized.
I think a lot of younger people,
they learn from having
direct contact
with a person with a disability.
Their parents don't teach them
because their parents don't have
direct contact in most cases,
but I find that in a bus ride
or giving an auditorium assembly
to a bunch of young people,
they have no idea what
you've been through,
what you go through, how
your life is different,
how you've got to approach
most situations differently
than they do, how much less
freedom and control you have
over your life than they do.
And they learn a lot, and
you also can teach a lot
about injury prevention too so
the same thing that's happened
to you doesn't happen to them.
And I think that's great
because we never had that.
What happened to me I had
no idea could happen to me.
One day your whole
life is different,
and I wish I had somebody
come to me when I was a kid
and say this is possible.
This is just how
quick it happens.
You're just not paying
attention.
You're not aware, whatever.
There's always a safer
way to do things,
with skateboards, bikes, stuff.
We never had that
when I was a kid.
And the last thing I
wanted to say is I was
on the country doctor
board of directors.
That was something
really unique for me.
I didn't know anything
about country doctor,
and I've been approached to
do a lot of different things.
And I did that, and it
was very enlightening.
I find that as a speaker, as
a volunteer, as in the field
of advocacy, you've got to
pick your battles in life,
and you've got to pick
your volunteer efforts,
your speaking engagements.
It's just like if
you hit a lottery,
hands and mouths
come from nowhere.
Can I get some of that?
It's the same with this.
If you're good at what you do
and you have a positive
attitude, your time is going
to be taken up just like
your money will be taken away
from you.
You've got to budget
yourself, and you've got
to pick a direction and
engage as best as you can.
>> I'd like to actually start
if you don't mind asking
some folks some questions.
And Bruce I was actually
curious for you
at what point were you really
ready to move out of kind
of doing the self-advocacy
of kind of working on getting
as much function back to
really going out into the world
and doing the advocacy
that you've been doing now?
>> Well, like I said, it
started a bit when I worked
on the political campaign.
And that was a little over
a year after I was injured,
a year to a year and a
half after I was injured.
I was still at that time
fully in a wheel chair,
was still pretty weak and messed
up, but I had time on my hands
and I was bored and tired
of not doing anything.
So that's where it started.
And over time as
I became stronger,
I began doing more and more.
And then in 2005 I
started working full time.
I work as a software engineer.
And that's made it a
little more difficult.
But still, yeah.
Still definitely possible,
and I'm still involved.
And I still have this
half hope that maybe
as the economy recovers,
right now trying
to do a traffic ticket bill or
anything isn't going to happen
because they're looking
for money everywhere,
but maybe as the economy
recovers, I still have hope
that maybe that kind of
bill could be resurrected
and we could do something
with that again.
>> Absolutely.
That makes me want to ask you
a question, Todd, if it's okay.
How do you balance,
how do you balance
out your very busy work
life with your foundation
and just even kind
of your self-advocacy
because that takes
a lot of time too.
>> It does.
I have a full-time job,
operations for a medical
company in downtown Seattle.
We make anatomical
pathology software.
And so in addition to that,
as the executive director
of the foundation,
trying to get that going,
and then just the
maintenance of quadriplegia.
That's a full time job as well.
My life is nuts.
I don't sleep very much
and, passionate, man.
German, you know.
[ Laughter ]
When I get to retire
the Earth suit,
I want the Earth to
be a better place.
So I think you do it
one heart at a time.
I'm just really good at not
really caring about myself,
which Kathy is over
there staring at me.
Not good. But I just care
about everybody else really,
and it's sort of a
blessing and a curse.
And it's my story, and
I'm the author of it.
And I'm surely passionate
about it.
I believe in people,
and I believe
in the power of your mind.
And I think we as a group
should be come together
and take care of each other.
And we're doing a
really crappy job at it.
And so I want to be a
part of helping out.
So I don't know.
It's just what you do.
You sleep when you
can, and you work hard,
and dead, I'll be dead.
So right now it's an honor
to live here and a real gift,
and I consider this
to be a blessing.
I'd be a fool if I wasted it.
>> That is a struggle isn't it?
To balance our caring for
yourself and doing all
of these activities and
managing all the other things
that you do.
Aditya could you respond
a little do that too?
How do you kind of balance
that out a little bit?
>> I was not balancing
it out for a long time,
so since I've gotten injured to
maybe 6 months to a year ago,
I really wasn't spending
much time on taking care
of myself psychologically.
Physically I was really anal
about all of that, you know.
The tiniest thing would
set me into anxiety mode,
which was good because
then I stayed
out of the hospital even
though I drove people
around me batty sometimes.
But it's good in a way.
A little bit of anxiety
about possible health issues
is a good thing, but balancing
that with the need to look
at yourself and the need
to take care of yourself
emotionally is always a
tricky part.
Balancing is just inherently
tricky and difficult.
And so after a long time of kind
of not worrying about myself
or feeling bad for my situation
and doing these other things,
I was advocating for different
social justice issues at school
with different groups on
campus and around Seattle.
Spending a lot of time doing
that, writing for the paper,
doing all these other things I
didn't have much time to look
at my situation very well.
And so finally it
caught up to me.
It was kind of triggered by a
break up of my then girlfriend,
but it brought up all
these issues of things
that I have difficulty doing
or will have difficulty doing
in the future, traveling
around the world
or having a typical
relationship with someone.
It's difficult for me to just
pass out at someone's house.
I can't just go out drinking
all night and then sleep
over at my girlfriend's house.
These are things that
I knew but didn't think
about until someone was
kind enough to remind me.
But these type of things are I
think important to always have
in the back of your mind,
and it hurts sometimes,
especially people with long-term
injuries to be reminded of them.
And it was easy for me just
to not think about it too much
because it was a tiny problem.
My little difficulties
were tiny problems compared
to the problems of the world
and things I was involved with,
but like Jeanie and most of
the people at the hospital
who have been doing this for
a while know, you really have
to find a balance and
take care of yourself.
Maybe not first and foremost,
but make sure you take care
of yourself along the way or
you're not going to advocating
for anyone else very well
or for very long in any sort
of sustainable manner.
>> Tom, do you have anything
you wanted to add on that topic?
I think it's a thing that
all of us try and work
on is how do you
manage yourself as well.
>> I think I'd add the word
flexibility to balance.
For me also a lot of
it is about strategy.
I'm a type A personality,
actually a lot more so before
than I am now because I
forfeit a lot of control.
And that's probably one of the
hardest things to do with this.
But when you deal with
personalities, other people,
I believe in do onto
others philosophy.
Works really well for me.
You can't be overbearing.
You've got to be flexible.
You've got to be kind.
You've got to be respectful.
What would another person feel
if they were treated negatively,
disrespectfully, whatever.
So you balance it out the
same way you forfeit control.
You balance that out.
You find a routine that works.
I got caregivers that
usually stick with me
for a couple of years.
Todd, I know you're jealous.
[ Laughter ]
But you just, you
go into it up front.
You tell them here's
what my needs are.
Here's what I think is fair.
I'm going to pay you well.
You're going to treat me well,
and as long as we have a mutual
respect and appreciation,
I'll never mistreat you.
If I do, I'll apologize.
It's a relationship just like
you have a personal relationship
with somebody with a caregiver.
So you do it with a caregiver.
You do it with other people
you come across in life,
people you meet, strangers
on the street, kids,
people you advocate for, people
you speak to in Congress.
Everybody is on a budget.
Everybody's on a
time constraint.
It's just a matter of
respect and being fair
to each other as people.
I think we've gotten away
from that a lot more
with the high tech.
As I get older I
remember time past
when people used to interact.
People used to go out in
the street and play instead
of locking them up in
their rooms until 5
in the morning playing video
games and texting people.
It's so impersonal.
I think getting out and talking
to people and interacting
with people is a lost art.
>> If you wouldn't mind,
Bruce maybe you can start
and we'll ask everybody
this question as well.
What advice would you give
to somebody who is thinking
about advocacy and
thinking about trying
to do something that's
kind of an outside of you.
You guys have all done things
that are for the community
or for outside of you.
Not just for people
with spinal cord injury
but for other people as well.
 
>> Good. Good question.
I, I think it's important to
find something you're passionate
about that's interesting
to you that engages,
because if I'm not
feeling the passion,
if I'm not really motivated,
it's going to be really hard
to do all the work that
it takes to do something.
To get a bill passed or to get
maybe even something as simple
as planting flowers or something
to beautify your neighborhood.
Or to really advocate for
yourself and your own health.
It takes a level of
passion and commitment.
 
So I would begin by
suggesting find something
that really does
interest you and follow it
and meet other people that are
interested in the same thing,
and find them wherever
through things like this,
through the internet of course,
through other wherever
it is people get together
about the particular
cause or issue or thing
that you're interested in.
It really can't be done alone,
and it can be very discouraging
to try and do something
just by yourself.
There's strength in
numbers for sure.
>> The advice I would
give to anyone that wants
to see something done
is probably the same
as the other panelists
have said,
and that is don't try
to do by yourself.
You will probably burn
out after a little while.
The history of social change
throughout just say the last 100
years has been of groups
like this, probably smaller,
getting together and seeing some
problem and working tirelessly
on the weekends, in between
jobs, in their free time,
working despite many setbacks
and despite repeated failures
until something happens,
until limited successes
take place and not quitting.
It worked the same way for the
Americans with Disabilities Act.
It worked the same way
for the women's movement,
for the Earth movement,
for every social change
in the history of humanity.
So that type of strength not
only in numbers but strength
in other people who
feel strongly
about the same issues you
do is really empowering.
And like Tom said,
it's unfortunate
that society has bit more
itemized and individualized,
but we can change that just
by going to events like this
and getting in touch with other
people who want to advocate
in something that
you're interested in.
And also not sleeping and
working like a madman like Todd.
It's always good to have
those people around too, so.
>> Let the Germans
get the work done.
>> That's right.
>> Exactly.
Do you have other?
>> I mean, they've all said it.
You've just got to be
ready and pick up a shovel
and start doing your thing.
>> So anyone can do it.
>> Absolutely.
If we're doing it,
you all can do it too.
>> Any other questions or
comments from the audience?
Yeah in the back.
>> I've got a couple of
them, but the main one is,
this is a bold comment.
I'd like to see another C1
to C4 complete quadriplegic
gainfully employed
in this country, not on
government subsidies,
with private insurance, and
paying their caregiving bill all
on their own who didn't come
into the paralysis with cash.
 
Give me another one
please because I'd
like to talk to him or her.
That's what I want to do.
I want to see more of us.
 
>> The injury actually
sensitized me,
if that's the right word,
to other people's suffering
a lot more than I was before.
I wouldn't say I was indifferent
or apathetic, but I was involved
with average teenage things
and going out and surfing
and hanging out with
friends, whatever.
But afterwards I realized,
wow this is a really
profound situation
that you found yourself.
There probably won't be a
way to pay back the people
that have helped
me along the way,
but you could use this time,
as Todd said, your limited time
on this planet to do
good, to do justice.
And I think that has been one
of the more significant impacts
that the injury has had
on me to clarify a vision,
even a general direction,
of where one is headed
and where one ought to
be headed in my view.
What that means in practical
terms is the age old dilemma
of transferring your
ideological goals
into something that's
going to pay your bills.
But there's plenty
of time for that.
>> One of my visions
is that, well,
seeing this clinical trial
start yesterday but to see
that we have more clinical
trials of therapies for people
with spinal cord injury,
both acute spinal cord injury
early injuries as well as those
of us with chronic
injures, long-term injuries.
Just would really like to
see more research getting
from the lab into the clinic.
And the time when somebody
who suffers a spinal cord
injury will have a lot more hope
in terms of the recovery options
they have as well as those of us
who have lived with it for
even many years have some hope
as well that these scientists
are going to crack this nut
and make some really
cool things happen.
That's what I'd like to see.
>> If I understand
this correctly,
you're asking what opportunities
presented themselves
that you just took
advantage of that just put you
in these positions or created.
[ Silence ]
>> When I was a younger guy,
I was able to take advantage
of a company called Nintendo.
At that point they had this
little 8-bit gaming system,
and children's was a beta site
for a controller that was made
for folks who couldn't
move their hands.
So I sort of got into
that and ended up flying
around the country being
the model for Nintendo,
and that was really fantastic
and was an opportunity
that I didn't even
know could exist.
And I did that for a long
time, and that was something
that I really enjoyed, and that
really began to install in me
that I have a particular
skill set.
It's birthed out of
complete pain and suffering,
but if I tool it correctly I
could make it a revenue engine.
And so that's what
I'm trying to do,
trying to use something
absolutely horrible
that nobody should go through
and I'm going to
use it to do good.
[ Silence ]
>> As far as opportunities,
I just took everyone
that was interesting to me as
I possibly could that came by.
So from that naturally once you
get your foot rest in the door,
it really helps because,
I know it's terrible.
[ Laughter ]
Just deal with it, alright.
Say for example there's a
student senate at the UW.
So I did that for
a couple of years.
And at time it was really
serious, but through that I got
to personally talk to
Patty Murray about a piece
of legislation that I
wrote for the senate.
This was in the big scale
of things kind of not
that consequential
because she said,
oh yeah I'll definitely consider
this, because I asked her not
to vote or vote against
a resolution
that would've favored
bombing Iran.
But next two weeks later
she voted for it anyway.
So this is the, there's a lesson
in this despite your
best interest,
despite all the opportunities
that come
by you're going to
have set backs.
And so that type of
resilience and flexibility
and keeping long-term
goals in mind is a virtue.
And not refusing
opportunities that come by even
if they don't seem like,
even if they don't seem
like the opportunities you think
are, or even if they don't seem
like what you think an
opportunity should look like,
it's a good chance to
just get some experience
and do what you can
with your time.
 
>> Jump in for a
15 second funny.
For folks in wheelchairs,
next time you're
in a department store and
you're shopping for clothing,
work with the gal or guy
that's fitting your clothes
and just say, does this
wheelchair make my butt look
too big?
[ Laughter ]
To lighten up the
mood a little bit.
It's a funny one, trust me.
 
>> Yeah. I guess I find,
I'll get an idea in my head
and it just can't, like,
I can't get rid of it
and it keeps following me
around and doing whatever.
And an example of that
which I'm thinking of is
in 2004 I had the good
fortune to go to be part
of a clinical trial at
the University of Florida,
a bodyweight supported
treadmill training.
And it was very helpful to me.
I spent 3 months down living
in a hotel in Gainesville
and doing this treadmill
training.
I left here walking
with forearm crutches
and came back using a cane.
And when I came back, I
was just thinking people
that need this kind of therapy
or need exercise therapy
shouldn't have to go to Florida
or California or wherever to
get this beyond what you can do.
I'd been upstairs on the eighth
floor doing physical therapy
for over a year and
a half and was just,
they were sick and tired of me.
>> No.
[ Chatter ]
>> So I came back and I
had this idea in my head,
and a few months later I came
to the spinal cord injury forum
and I met Al and Sharon Northrup
here who are the founders
of Pushing Boundaries.
And over time we together have
a place where, had that been
around in 2004, I would've
not had to go to Florida.
So I guess that's how
opportunities happen for me.
They're stuck in my head
until something happens
or something else gets done.
>> We are actually just about
out of time, and I wanted
to actually have an
opportunity to thank you guys.
This was very wonderful.
I really appreciate it,
and I think they deserve
a round of applause.
[ Applause ]
And thank you all
for being here.
