Hello everyone. My name is Beth Schaffner and I'm with PEAK Parent Center's Shift Project which is
focused on providing information
and training
to youth with disabilities and families of
youth with disabilities to assist with
transition to a good life, and we're very
pleased to be presenting this webinar
series this summer. I'm very
happy to be welcoming you to our first
webinar of the series - Know Yourself and
Speak Up: Tales of Self-Advocacy and
Lessons Learned. Our speaker today is Ian
Watlington. Ian is a Colorado native who
now lives in Washington D.C. and Ian is
a longtime friend and colleague of PEAK
Parent Center.  He has been very involved
in other ways in Colorado, but he currently
works at the National Disability Rights
Network, providing technical assistance
to the Protection and Advocacy Network
concerning issues surrounding mental
health, self advocacy, and some public policy.
He spent over a decade of his life
being a professional advocate and he
often uses his personal story as a
person with a disability to inform his work.
He's worked a lot, as I said, in Colorado in the
past, has gained a reputation here as a
storyteller and public speaker and
shared stories about life with a disability and
the human condition in general  in
both local and national venues. Ian is a
self-professed nerd who enjoys laughing,
thinking, reading, independent and foreign
film viewing, but most importantly
pushing the envelope.  He has a degree in sociology,
and a minor in political science from
Guilford College in North Carolina.  And
so we're very, very pleased to have you
here today Ian, and I'm going to turn
this over to you. I'm going to pull
you up on the screen so everyone can see you.
There you are, and I will--
-- Hi! Sorry for the little delay there.
Thank you Beth, for that very gracious
introduction.  I very much appreciate it
and you know, I do a lot of webinars in my work here
at the National Disability Rights Network. and it's always
And it's always important to me, and meaningful, when I get a chance to contribute something with my friends in
Colorado. So I spent the majority of my
life working in Colorado both kind of as a
professional and personal advocate. As Beth said, I'm a native of Colorado.
I'm just completing my 4th year in Washington D.C. and my 3rd year, more or less, at the National
Disability Rights Network. What I'm here
to talk about with you today is
stories and points that I want to make
about holding on to a dream, creating a
vision, and how some of those things happened in my life, and some of the trials and tribulations, successes and
failures, and as the slide said lessons learned. Now, I'm fully aware that this is my story.  I
don't know what your story's going to be.
I'm very hopeful your story going to be one of
promise, success, but it's probably not
gonna be an easy one, cause mine sure hasn't been, but I've been a lucky person too
and I fully realize that as well. So I'm here to just kind of have a conversation with you, even though I can't talk to
you, but alright, you can't talk to me rather,
but I'm just here to tell my piece, and then maybe we
can pick out of that some lessons, and some pieces
that will help inform you and set the
stage for the rest of the webinars that you
will see this summer. I guarantee you they're going to be
well worth it, so if you're seeing this, please, please
continue to enjoy the archived videos that PEAK
PEAK puts forward.  I know that they're of
high-quality and great content.
Let me first tell you a little bit about me.
I have a disability, and I'm a wheelchair user.  I have both
visible and invisible disabilities. My
primary label is a person with cerebral palsy.
And with that came some learning disabilities
as well, and so I struggled with that a lot in
school. I managed to be pretty successful with
supports from my community, my family, and
and yes the special education system, I can't leave them out entirely - they helped me a lot.  But
when I look back at my success, yes I needed the professionals in my life, but
more than that I just needed other
people, other people to quote-unquote
"have my back."  And one of the things that my
mother first taught me in my journeys, trying
trying to navigate kind of a crazy world and figure
out who I am
and what I'm going to do, which is something
that all people go through, but I think
having a disability there's kind of an extra weight on ones shoulder - there's more
hurdles. But she taught me that it's okay
to have a healthy, and I emphasize healthy, questioning of authority, and that it's ok to
disagree with those above you, or who are delivering
services with you, on you, for you. So
that was always something she supported
and nurtured in me with the main
caveat being that I always had to treat
people with respect, but I also had the
right to expect respect back. So I think
that foundation is largely why I was able to
vocalize, and to get my needs met, and to have the
community I do in support of me and my future.
I will tell you sitting here in Washington D.C. that my journey is not over by any means. It's been a rough four years.
This wasn't an easy adventure to decide to leave
Colorado, and move all the way to the east
coast, without really a support system.
I kind of was so exuberant about moving here because
I've always wanted to, as a precocious kid,
and so I've had my struggles here finding
friends, getting the medical care I need, and so when I talk to you about some of my successes today,
keep in mind I'm talking to you from an office of a job that was hard to get, hard to find, that I'm
in a community that is very different than the one I grew up in, that I am still struggling  to get services and certain
medical needs met. So although I have some funny and
really true success stories this is not romantic.  This is not just honey and milk.
There's some jagged edges around this
story.  I want you to keep that in mind.  This isn't
just all copacetic.  With everything that I
talk to you about today, there is some
struggle and some strife, and I'll talk to you a little
bit more of that struggle at the end of my remarks today.
So where to begin? Well let's start with a brief, brief just encapsulation of where I started.  I was first
placed in a segregated school in the state of Colorado, in Jefferson County, Colorado, and I was
there to receive intensive therapeutic services, and yes
some pre-academic, whatever that means, and
and academic support. It was around age of 5 to 6,
that my mom began questioning whether
she wanted me to continue in a
segregated setting. What was her concern?  Her concern was
that she saw people getting older and older
in this segregated setting, which took people,
literally from the age of three until 21,
and she just saw people continuing to be in this very nice sheltered environment, but she realized they weren't being
exposed to much. There wasn't as much
enrichment.  There weren't typically developing peers around.
So after requesting an IEP meeting, those lovely IEPs, she fought tooth and nail with the
objection of the social workers and some of the
professionals, that I go into a regular
program. So after a few more evaluations and
conversations that weren't always easy, I
was what then was called mainstreamed into the public
school system, into the typical public school system,
receiving some pullout special ed supports,
luckily mostly pushed-in special ed supports which I continue to this day believe that
is the best way to support kids in our education, is to
bring the services to them and to the classroom
rather than removing them from the
environment, but I could go on and on
about special education reform, so let's just
forget about that piece. But I was lucky, I was able to find some friends and develop
along my way, and I was able to do so
and practice having my voice. One thing was
that I was at all of my IEP meetings from second grade on.
Now, I wasn't at the whole meeting, or didn't understand everything that was talked about, but it was my mom's
philosophy that if this plan was about me, then for goodness sakes I should be there. And so I learned from an early age that I could
could speak and that adult weren't always scary.  I've met some scary adults - and now I am an adult,
but not a scary one, I promise! But anyway I learned
to not fear adults, and to be able to
articulate some of my needs. I realize that
some of you out there listening - family
members - you may have young adults or children who
don't have as easy of a way of communicating
and articulating their needs, but I am fully convinced that with assistive technology and creative thinking,
there always can be a way to try
to figure out what the needs of a person
is, what the desires of them are, but it isn't easy
and again it wasn't just a pretty
picture in my case.  But I truly believe
that people with disabilities of all types
all have dreams, all have wishes, all want to take a risk whatever that may be,
at whatever level they can, at whatever level they want to. We must keep challenging the systems
that our society created to see
disability differently, and
by doing that, we must with children, parents,
family, concerned community members keep pushing the envelope because I come from a school of
thought that says my disability isn't the
problem; what is the problem is society's
failure, or inability, or unwillingness to
accommodate my disability and when you don't
accommodate the disability, it is pretty
disabling. So I don't believe it's all about,
medical model, or your labels, your
symptoms, you're affects, your issue, whatever
your behaviors, I think those
play a role, I'm not naive that those all inform and
develop and play a role in our
maturation if you will, but I don't
believe that concentrating on those things
is necessarily a good thing. I think keeping
them in the back of our minds is
important, but rather we must focus on where we
stand in society, where society stands for us, and that we must look beyond just the
typical answers - the cookie cutter answers - that the professionals will give us. That's easier said than
done, and I realize that, but there's
always ways to challenge the system bit by bit and
sometimes it's gonna be easier than others. Sometimes you're going to have energy to do it,
sometimes you're not, and that's okay.  But I truly believe that if people with
disabilities are going to have
successful transitions into adulthood
it's going to be at the grass roots, at
the community level, pushing systems to
better meet peoples needs. Now there are times I
will admit that I believe, or I feel
inside my heart, let's just implode the whole system and start over.  It is so broken, let's
just -  you know - screw it, pardon my french.  Let's just start over, blow it up.  But as much as I would like to be a
revolutionary, and yes I am somewhat of a radical in some things, I just don't think that a
full fledged "implosion," and re-creation of
the system is going to happen. So what we have
to do is to push the boundaries of the system that we're in, and in a sense,
and this I think is a hard piece for
people to understand because we're
dependent on the professionals.  We can't
just take them for granted and discard them
completely.  But honestly, to create real change, you
have to create discomfort, and discomfort
is, well, uncomfortable.  
It's uncomfortable for you, it's uncomfortable
for the professional or for the system, but
little by little, by creating situations of
discomfort and zealous advocacy, we can chip away and find our voice, and find the resources, some of the resources at least, to
better achieve peoples dreams. Now let me tell you, so my advocacy started while I attended
my first IEP meetings, and continued to
attend them throughout my school
career.
But my true advocacy moment, where I knew, where I HAD to advocate, where there was a situation of injustice,
where there was a
situation where my back was against the wall
and the only way I was going to be able
to get out of it was to speak up and to let
my voice be heard.  It was hard and it was uncomfortable, but let me tell you, if you want to help
create a little bit of discomfort, doing so in the middle school years is the way to do it! So if you know
middle schoolers, it's kind of the armpit of public education if you think about it.  Your hormones are going crazy, you're squirrelly,
you're trying to figure out who you are,
one minute you feel like you're an adult and your parents don't know anything, and then the next minute you want your
parents to be there, and hug you...it's just a whole time of just a bunch of stuff going on, for better or worse. But so I
had that regular kind of pubescent, middle school jumpiness churning inside of me, and then add to it the situation that was
unfair, discriminatory, and unjust... and it created quite an interesting situation.
So let me explain that I was in middle school and in middle school, like I was saying,
it's a squirrelly time. You're definitely too old for the playground equipment, but you're too young not to have any outside kind of relief
or release. Recess has to remain in
some capacity - although they've been cutting it like crazy, but that's a whole other matter - but you have to have some
kind of release, and so in my middle school there was a hill and it was basically  the
social marketplace of the school, it's where things happened,  People were making friendship bracelets and
selling them for exorbitant prices inside the school, people were playing Dungeons and Dragons, people were wrestling, people were doing all sorts of things
on this hill that was on the back side, behind the cafeteria. So - silly me - I thought since I was a student at the school that
that I had the right to be on the hill.  So some days I crawled up the hill, got out of my chair
and crawled up the hill, and some days I was pushed up by my friends in my chair, to a flatter area,
and then I usually got out anyway, but one day - and so we're gonna say "Day One of The Hill."  So day one, I was at the hill,
and the vice principal came out, and it might have been the principal too, I can't remember, but I
don't know about you, but one thing I've
realized is that principals have a special look that they give.  I don't
know if it's in the water in the schools they go to, or if it's in the water in their graduate program or whatever,
but they can give you that look, and you know that something's about to go down and you are probably not going to like it.
So they came down and I just knew, "oh crap." So I went
down as they beckoned me and I asked them what's going on,
and they said, "Ian, we're concerned.  We're afraid that you
might fall on this hill, and so we would prefer...we don't
actually want you to be on the hill. That's not where we want you. It's unsafe."
Well, I immediately boiled up with that broth of hormones, and outrage, and all sorts of things.
I became a little tiffy, and I kept asking
"well why?" and they literally said, "well there's this thing 
with your bones and your muscles that makes you more at risk
of a fall."  And so, I said. "Really?" Because that guy (who was a able-bodied or typically developing peer) was
literally rolling down the hill as we were talking.  "Are you worried about him?"  But in fact they were focused on me and told
me that I couldn't be on the hill any more
for safety reasons, and they even said again there was this thing with my bones and my muscles, and I just said,
"You know, I don't know what you're talking about and I would like to finish our conversation
about this tomorrow."  So then, that night I dialed up my rehab doctor from Children's Hospital, and
I asked him if I was more at risk of a fall, and he said "Well it depends on the circumstances, you
have to take the regular precautions
that everybody does," and I said, "But they honestly say I have a
thing with my bones, and my muscles," and he just
laughed and said "what?"  And I said, "I know, they think
I am way more at risk of falling than other kids," and he's like "Well that's overdoing it." And I said "Could you write that down?  I think they would
be very interested in hearing about that, could you
write that down?" So he wrote a letter
and faxed it over to the school. So we're at "Day Two of The Hill."  So day two of the hill,  the morning starts and I am ecstatic,
well maybe not ecstatic, but I'm excited to get the pass that says, go to the principal's office.
Now usually one is not excited to receive
such a pass, but I wanted to get their
reaction to the letter that I knew
my doctor had faxed. So...soon... I got that white
card with a message to go to the principal's office,
and I did, and they said, "Well, we got a letter from your doctor assuring us this and that,"
can't remember the exact words that were exchanged,
but then I do remember, "but there's
still a liability."  And people with disabilities are always thought
to be more of a liability than other people, and I promise you folks, you know,
people with disabilities and their
families do not have the time, resources, energy to
always "lawyer up."  So I just find it amusing that there's
this fear about liability and people with
disabilities taking risks, and that we must protect them
and all of this,
and I immediately said, "We'll sign a waiver," and quite honestly I don't know where I came up
with "we'll sign a waiver" and they said
"well you know, anybody can get out of a waiver, so
we're still concerned about liability," and I said "you know, I just don't think this is right,
and I think that this is unfair, and can we finish
this conversation tomorrow?"  So that night
I go home.  My mom's supportive of this battle, but she's dubious about it as well.  I
can understand that. She's seeing her
middle school kiddo taking on the bigwigs.
So I called an advocacy organization,
 and I said, "Listen, there's this deal, everybody get's to go on this hill, except me
because they're afraid of a lawsuit, and blah blah
blah, I think it's unfair." You know, I explained the situation, and they said -
and I learned a great word that day, that night, "they're being
quite paternalistic," which means, very protective and father-like and being kind of parent-like,
protective - unnecessarily so - and I said "ok, that's a great word, I like that!"
and they said "also there's this law called Section 504 of the Rehab Act, and it says that because of your disability,
and because they are federally funded, they
cannot discriminate against you because of
your disability, that is different than non-disabled people, so they are actually violating the law by saying you
can't go up the hill," and that it's in Section 504.  
I was blown away.  I had no
idea that this law existed, and I said "Could you just provide a synopsis of that and just fax that over to the school?
Because I think that they would really like to hear that" - being totally sarcastic, of course - and so that next day, I
waited - so we're at "Day Three of The Hill" - and I was most excited this day, because I had the two golden professions on
my side - I had the medical profession and
the law -  on my side.  I thought this was fantastic.
I waited and waited and waited for that white card, and waited and waited, and finally, it came toward the end of the
day. I go into the office and they say, "Well Ian, we've been on the phone with our lawyers and you're right, it's illegal for us
to discriminate against you and not other
people, so beginning tomorrow, no one will be
allowed on the hill."  I was crushed - talk about the wind out of your sails, multiply that times
100. So I then just didn't know what to do, but I knew that I couldn't be the person that stole
everybody's hill privileges away, that my fight - my official fight - was over.  And I said to myself then, "Well Ian, not again.  Next
time, you have to fight harder and smarter" but that
was my first really tangible and powerful
and kind of life impacting - in kind of a searing way - about what advocacy is about, what struggle is about, what pushing the system
was about, and I clearly believe that
I was in the right, that they should have let me on the hill. They could have made
an agreement, we could have talked about it, we could have done anything, but
what they weren't gonna do is let a snot-nosed
middle schooler, precocious as I
was, win a battle. Why? Because they were bigots,
and I use a strong word there, but they saw
disabled people as less, and they wanted to continue to deny me a basic social interaction
with my friends.  And so even today - you might be able to hear it -  I'm still irritated by it, because I just don't understand what
makes... why they couldn't have bargained with me, this doesn't keep me up at night, but it still was so impactful.
So people ask, "well, did you ever get back on the hill?" and the answer is, of course I did, but I did so under their nose,
I did so very hiddenly, very calculatedly - I lied, I hid - 
and so in all of this, what they taught me was how to
was how to lie, to hide, and to cheat, and I don't think
those were lessons they intended to
teach, but that's what happened. So the hill story is a
perfect example - and a metaphor - where I knew that I had a voice.
And even though I lost, there was a 
certain strength and pride in it, and I think there's a moment in every young adult person's life,
that is like that, some come earlier, some come later. I think there's moments where
families around the kitchen table, and
they say "No, our kid is going to be different, we're not
going to accept this kind of cafeteria plate, compartmentalized servings of just basic services - we're going to try to push the system
and individualize it for our family, for our kid,
our young adult" - and they decide to fight - and
some fights you decide to take on and others you don't, but they decide to fight.  They have in a sense, "shifted" their
advocacy and their vision for what's possible into a different direction and
so I'm not saying that this is easy,
but I am saying, that if it weren't for
my mother, if it weren't for my
friends willing to hide me on that hill, it would have been a
completely devastating loss, but I was able with the help of others, to get up on that hill,
rightly, or wrongly, but I still lost the big battle.
So what do we learn from all of this? Well we
learn, one, that you still gotta keep pushing
the envelope.  You learn, two, it isn't easy.   Three, it sucks to lose, but you
still learn when you lose.  And four, you can get harder and smarter for your next battle. So I just want
you to know that for me it was possible.  Some of it was luck, some of it was skill, some of it was how I was
raised.  It was a whole
combination of things... for a minute, and then I will
end with a written piece, but I want to talk about
this notion of independence, and we talk
a lot in this country, the United States,
about independence and being independent.
Even when we say self-advocacy 
and self-advocate, it's self, self, self -  
it's "one."  Well, I urge you to embrace the idea of
interdependence, because I truly believe that no one - 
able-bodied, disabled, intellectually-disabled, blind, deaf,
wheelchair user, what have you - 
got anywhere, without some
supports and a community to make that happen.  So if you spend time doing anything,
spend time building supports around your
young adults and young adults, get your
friends to have your back whenever you
can, because you probably can't win all
these battles alone.  In fact you won't.  And even I have had to do a patchwork of supports, both paid
and unpaid here in Washington D.C. to make it
OK and to make it possible for me to show
up to work.  It hasn't been easy, but I have no delusions that I can do it by myself, so
one relief that it was for me, was when I stopped dreaming about doing everything
independently, and I started realizing
interdependence and the possibilities
that come with it, and that in fact we all need each other.  We all need each other.  And when I wasn't forcing
myself to be independent all the time, a huge weight was lifted off my shoulder, and I was able to do more things.
Well time doesn't allow me tell more
stories, but I do have more.  But, what I wanted
to do is kind of wrap-up about the hill
again, because I think - I didn't know this at the
time of course -  it really is a strong image, it's a strong metaphor for all of this and I
want to continue to think about interdependence instead of independence, and I want to start thinking about things like making a shift,
and with that, I want to think about citizenship. I am a citizen of the United States, obviously, and with that I have rights and
responsibilities - but am I a true equal
citizen as a person with a disability?  I
would say that we still have a lot of
work to do and that citizenship should be our goal,
letting us know who we are, what we need, what we want, to be our full selves, to be citizens is really our
next goal, and the way we should push forward.  That the concept of citizenship is larger than one set of
services and one set of issues.  It is
larger, it is about people, humanity, experiences,
rights, etc.  So with that, I have a little thing that I
wrote with both shift and citizenship in mind.
I hope you find that you like this basically, but I thought first let's define "shift." "To put
something aside or replace it by another or others;
change or exchange; to shift friends or
to shift ideas." That's pretty easy. "Citizenship"
"The state of being vested (that means being fully integrated and empowered) with the rights
privileges, and duties of a citizen."  I think that we know basically the definition of what a citizen is in the most basic way,
but here's what I have to say that has to do with shifting and citizenship:
Holding onto your dream is not an
exercise in naiveté.  Rather it is an exercise in
humanity and citizenship. We are not entitled to
have every dream that we hold realized, but we are in
we are entitled, either in sum or
 in part, to achieve some of those dreams. 
The act of dreaming and achievement of those dreams
has for far too long, and historically, been
quashed by people and systems that fail to
imagine, innovate, advocate, and frankly do their collective jobs.   Let me read that again.  We have for far too long,
and historically, been quashed by people and systems
that fail to imagine, innovate,
advocate, and frankly do their collective jobs.  In a world where people
with disabilities and their families
achieve citizenship, there are both rights
and responsibilities.  One
responsibility is to find our voice
in whatever form that may take - whether it's noises, whether it's
assistive technology, whether it's
gesturing - I don't care, we all have a voice -
metaphoric or literal - and we should speak! Speak up without apology about our dreams and desires!  Self-advocates and self-advocacy at its
worst, is a euphemistic term to describe
and identify people with disabilities - a
slogan - but at its best, it is an instrument by which we begin living the life WE want, rather than living the life of what a
a stale system wants to impose on us. This is not a path where one skips, gallops, or leaps.  It is one of struggle,
success, and defeat.  But we must not
forget that there's dignity in struggle...
learning in failure...knowledge in risk...and true power in
interdependence. So here we are, not
knowing what's next.  I don't know what's next really to be
honest either.  What do we know however? 
That we must shift.  Our society must shift.  We as
people with disabilities have no choice
but to gather ourselves up, to organize, and to get down
into the grassroots - to hold on to our grit
and well deserved, well earned
righteousness, and lean forward towards our
respective hills. This is not a Hallmark vision
or a sappy Lifetime movie.  Instead it is a deliberate act of the community, assisting one of its members to sit at the table of
real citizenship and begin a conversation that leads to
action, creates possibilities, and allows him or her
to lean forward in her or his pursuit of happiness.
Thank you, PEAK.  Thank you, viewers.  I appreciate it, and
I will see you soon.
I believe our paths will cross. Thanks again.
Ian, I'm speechless and I need to find my speech, and speak up.  Thank you so much. I can't
tell you how valuable your insight and wisdom and eloquence is. We do need move on to complete this webinar,
I'm going to put my email address in the
chat box so that those who are listening and
viewing the webinar can know that they can contact me if they have any questions, or would
like to ask you for any information and I'll
be happy to pass that on to Ian.  And again, we are
very grateful that you have helped us initiate this webinar series. I'm going to put up
another screen now Ian and say goodbye to you (or you're certainly welcome to hold on
for a few minutes) but I do want to
let everyone know that, and as Ian indicated,
this webinar today is the first of our four
webinar series, and in a minute I'm going
to show you how you'll be able to
access the other webinars, but I did want
to just go over that, our second webinar
will be presented by a great individual, is an
amazing advocate, and very articulate who is
a parent and her name is Pat Amos and she's
going to speak a little more specifically to the shift in the roles of parents during transition.  I think you'll find that valuable. Then Joshua
Winkler, who is a Colorado person, who is an advocate for people with disabilities and very
knowledgeable about advocacy, has
experienced advocacy for himself, as well
is very involved in systems advocacy.  He's going to speak more specifically to some of the legal
and policy aspects of assuring that those of us with disabilities and those of us who are families
make sure that we get what we need. The final webinar is going to be
presented by a colleague of Ian's, from the
National Disability Rights Network.  
Her name is Amy Scherer.
She is a self-advocate and an attorney, and has some great wisdom and strategies to share with us.
So the recordings of these webinars, all four of them, will be available to you or any one you want to recommend them to
to access after October 1st 2015, on the PEAK Parent Center website, and if you'd like to contact me sooner to let me
know you're interested in those, I will
certainly make sure and let you know
when you can access them.  And anyone who's contacted our Shift Project or participated in any
of our webinars or in our workshops, or has talked to our transition advisor at PEAK for assistance
around transition and accessing adult
supports and services
will get information about... an announcement about
the availability of the webinars. So
please remember to contact PEAK Parent
Center for information and for
support.  Our project is going to be
beginning its second year of five years
starting on October 1st, and our services,
in addition to the webinars, and
workshops available in local communities, our transition advisor services
that I've mentioned.  I hope that you communicate with us with any questions,
ideas, concerns, and again I want to thank Ian for sharing his amazing
wisdom and taking his time to share with
us today.  We hope to stay in touch with you.
Thank you very much.
