You know what’s funny?
Transition is pretty hard! Whodathunk?
Well I did… which is why I decided to not do it for a while,
and just become the (apparent) expert on it in the country! Too bad I have this ridiculously
inconvenient drive to do big things, and continue to grow, learn, and reach for
my dreams. Who do I think I am?
I’m being reminded that everything I do becomes an advocacy
movement, and I’m ok with that.
It’s gotten me to where I am, and I’m not going to stop, but to be
perfectly transparent, it’s a little exhausting.
Nobody mentions that it’s damn tiring to “be the change you
want to see in the world.”
But I suppose that’s why there’s Starbucks.
A couple weeks ago, I had the honor and privilege to attend
the National Seminar on Disability Policy, with Owen, and many representatives
from Nevada, and their Developmental Disabilities Council. I originally booked a flight, assuming
that I would’ve gotten into GWU, they would be fantastic, and Owen and I could set
up life in DC during the four days I was down there.
Perhaps I did get into GWU. The world may never know….(as they have not actually
corresponded with me beyond “your application is still being reviewed”) So that’s another rant, but long story
short, I had this flight booked and some time in DC, turns out many of the
people I was going to try to get together with weren’t actually around, and I
had quite a bit of free time, which I decided to utilize by just going to the
conference- honestly folks, who doesn’t like to go to really depressing key
notes and hear stories of budget cuts as a vacation. Sounds like a retreat to me!!!
To be perfectly transparent, I didn’t think this had much to
do with me, and didn’t understand the full concept of “developmental
disabilities.” Boy did I get a
schoolin’ from team NV.
After I finally got to DC (after missing my flight, staying
a night by myself in Portland, and being rebooked by the angels at US Airways)
I took a nap, showered, got out of my punch drunk tired state of mind, I went
with Owen to one of the plenary sessions where they talked about the demise
that is our Medicaid programs, and how we need to defend the community approach
vs. institutionalizing people with disabilities. My heart sank, but my ears perked. This is exactly what we’re also talking about with
transition, and that I have been proving for my own case for many years. I started thinking of all the people I
knew who had they not had the level of family and community support they did,
would be in nursing homes. Oh, you
know, like me. That flame inside
me flared.
After that, Owen and I went to dinner at Capitol City Brewing,
across the street from our hotel.
We were able to breathe, debrief, and talk about our future together,
and the reality of moving, which we both began to realize, is going to be a
reality. We had amazing food, and
beer, and remembered how good it is to just be together without one of us being
on screen.
The next day, I decided to head to Capitol Hill with all of
the NV crew because I didn’t really want to sit in a hotel room all day alone,
and I just wanted to see what it was all about. Straight out of the gate we sat down with a Senator
(who I’m sorry, looked remarkably like Donald Trump) who immediately was drawn
to me, and I knew that I probably couldn’t just pretend to not be from around
here.
In that first hill visit I learned that a developmental
disability is “not an intellectual disability but anything that occurs before
the age of 22, and affects 3 or more areas of life.” Again, much of our transitioning adult population.
I also watched in awe as this amazingly choreographed
presentation raised points of community inclusions and helping these people
with disabilities become tax paying citizens (= more return on investment for
the government) They knew the market they were speaking too, and it was
important to learn as that is going to be most of our market as we continue to
advocate.
We went from building to building, parading in and out of
elevators, until we reached our last hill visit, with the staff of Senator
Reid’s office (he gave me an award at the Vegas conference last year, so I felt
a little attachment). It had been
a long day, but again the presentation went as planned, and I had moved to
introducing myself as a national advocate, cause hey… I am. I had done so well, to keep my mouth
shut, but it was at this visit that all the points and thoughts that had been
building in my head just couldn’t be confined anymore.
One of the staff members said,
“oh… this is great to hear but I work more with issues of healthcare.” WELL isn’t that ironic. I immediately introduced myself
as being from the national center for healthcare transition and talked about
the connection between health and community involvement/successful
transitions. Case in point, if a
young adult has no obligation to get up in the morning, no job, no school, no
positive relationships, what do they have to be healthy for? Living a stationary lifestyle no doubt
leads to more health issues.
Then the other staff member chimed in saying he was concerned with
issues of SSI. And I explained how
we need to find that balance of helping our people with disabilities,
specifically transitioning young adults find that level of success where they
can work and make money, and be a contributing tax paying citizen, but still
maintain the supports that it took to get them to be able to do that.
I felt my face getting hot. It was personal now.
I explained how bills like the DD act (read more
here) affect things like accessibility
that you may want to work and go to school and be a contributing citizen, but
none of that is possible if you can’t get in the door.
After that, we went to a reception, and I saw people I knew
from all over, and was able to introduce them to Owen and tell them about our
plans. Then we got to meet Senator
Harkin who has been a huge champion for all things ADA. It was a whirlwind of a day, but at the
end of it I realized something pretty cool.
We are not only advocating for what’s right, and many people
with disabilities. We are
advocating for OUR future, as we’re living it….
That sort of takes our relationship to a whole other level,
and it’s neat to think that we can rally for things like this together. Psh, movie dates, give us Capitol
Hill!!!
So back home, the journey continues, and it’s everything we
were advocating for on the hill.
I’m continuing to figure out my insurance and financial aid, like any
typical grad student. Luckily I’m
moving to a state that requires you to have insurance…
And we’re looking for an apartment. Not like any other grad
student. Bottom line it shouldn’t
BE so difficult to find an accessible building. It’s 2012. And
don’t give me, “It’s Boston, the buildings are old.” I will not favor architecture over humanity.
Beyond that, I’m coming to a remarkable discovery that there
is very little presence of a “middle class with disabilities,” which I find
hard to believe as I know so many people who are living independently, but from
my research in this moment, you basically need to be completely reliant on the
state and on a list for subsidized housing, willing to live in a
senior/disabled living center, or have a trust fund and a penthouse with a
doorman. What about the people who
have been able to sustain themselves financially and are actually in the
housing market?
“Are there any
realtors that specialize in working with people with disabilities?”
“Well… no because most of them can’t afford to look at
market price.”
Well it sounds like I have found myself a mid-life crisis
career, but in the meantime, I have many eyes and ears in Boston helping us,
communication with lots of orgs, and the school, and an attitude that we will
not settle for less than we deserve.
For all that we have done, for others, and the disability movement, I
sure as hell am not going to step back and say that we can’t have the future
that we are creating.
Transition?
Come at me bro.
