Sunday, May 06, 2012

I can haz transition?

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.

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