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.

It’s already March! That’s three months into 2011.
I haven’t necessarily forgotten to blog, but for the sake of transparency I’ll just say, winter and I truly do not get along and I just wasn’t feeling in a place to say anything that was worth reading.

Nobody wants to read about the Winter of Mal’s Discontent, which really is what it felt it had become. I hate being cold, we got way more snow this year, than really…in all my life that I can remember, and I simply wanted to be a hermit (and pretty much did) so how fun is that? It’s not really.
Although- being in a huge slump of winter hating, did sort of put a fire underneath me to do something about it. This winter really made me realize that, beyond it not even being physically safe when all the parking lots and driveways are glaciers, I really cannot do this. I’m not happy here. There are no opportunities for anything that would further develop my career, and well… it’s boring. I feel like a cat lady at the mere age of 25… and as much as I love my Muffy. That is a no go.So rewind to January. I decided I needed to start seeing what I can do on my own and where the challenges are ultimately going to be. A couple weeks into the brand new year of 2011 I had myself a round trip ticket to good ol’ Washington DC. Just one. There was a meeting of all the National Centers, and so I planned a weekend accordingly so that I would have some time away, and then be able to represent Got Transition? at the meeting and jump back into the game, since I felt a little out of the loop after missing all the action in October.
As the days went by I kept getting a little nervous, but I was sort of surprised at how I really wasn’t all that phased by making the venture by myself. I had been planning it in my head for months already, and I knew that the next step really was just taking the plunge.
So I did. And in that one weekend, I felt more alive than I had in months. The travel was seamless. Everyone went above and beyond to make sure I was ok, and just to be safe, I had gone ahead and had one of those lovely black SUV’s meet me at the airport so I would be sure I’d be taken care of. Look out Lauren Conrad…there’s a new diva in town with equally fabulous sunglasses and pink luggage.
The first night I was there, after the mandatory post flight nap, and discovering why I don’t watch Sarah Palin’s reality show, I met up with one of my VIP’s for an informal strategic planning meeting of “operation Mal needs to live in DC.” No conclusions were made except that it basically needs to happen, and that Jersey Shore was a lost cause after Miami.
The next day I tried to fathom that I had an entire day, and the entire city to myself, with absolutely no agenda! I slept in (of course the one time I can sleep in in a hotel, the beds are a bit subpar…) then eventually made my way to the nearest Starbucks… which was in walking distance, and figured out my day over a latte and breakfast sandwich. It was a bit surreal as I remembered my first week of college, as I sat and Java Joe’s and I wrote in my journal “It’s not exactly a city…. Or Starbucks… but look at me, on my own writing in coffee shop!” (or something equally faux optimistic) And now, here I actually was, in a Starbucks, in a real city, with a sense of purpose, things to do and people to see.
I ended up at the Smithsonian American Art Museum for most of the afternoon. “Brain…meet art! I know...it’s been awhile.” As I wandered through the exhibits, taking it all in, I realized just how long it had been since my brain had actually had to interpret or absorb anything beyond Jersey Shore, how to get to Margarita’s, or Real Housewives from all over the map.
After that I wandered around Chinatown for awhile and ended up at Chipotle for dinner. I know, I know. Here I am, with some of the best restaurants, DURING restaurant week…. But, what the heart (and stomach) wants… the heart wants.

Then, I magically hailed a cab out of nowhere, in a fashion that would’ve put Carrie Bradshaw to shame and got back to the hotel just in time to watch the final game before the Super Bowl at the bar with people from all over (I even scored a free chocolate mousse). All in all, a successful day.The next day was the meeting, which was held at the Army Navy Club, so there was a dress code! Up before the sun, blazer, pearls, nylons and I was off. It was a long day, of too many powerpoint slides, but also seeing so many people who were glad I had made it, and the feeling that “oh yea… you’re wanted here!”
But before I knew it, I was putting sweats back on in a hotel bathroom, and watching the sunset over the Washington monument from my cab to the airport.

I had done it. The flight home was one of many emotions (as the flights home continually get more and more emotional…) of excitement, accomplishment, but also fear, because now, I can’t deny, that the only thing holding me back… is me.
Sine then, there was also a wonderful trip to Portland, Oregon, and another epic week in DC for the AMCHP conference (where it sort of all began… last year).I got to debut with the new National Center, and give a presentation that had standing room only in attendance, and was a firm reminder that I’m really finding my voice in all of this, not just reading somebody else’s slides.

Between the gala (an almost perfect Valentine’s day consisting of a red dress, and champagne), the sun/lack of snow on the ground, being able to walk across the street for coffee, or Chipotle, and the rush of learning, thinking and networking again, it was yet another event that left me going “Oh yea… you’re good at this. This is why you do what you do.”

The other highlight that cannot go unmentioned, because if this hadn’t happened… the week would’ve been… fairly lonely. I met my long time virtual bff Emily! We were supposed to meet in October, but we all know how that turned out. To have someone of my own demographic who really “gets it,” on every level like nobody else I’ve ever met was absolutely amazing. Suffice to say, we had way too much fun, and once again I’m left saying “Whyyyyy do we live so far apart?!”After all of this, I went home, frustrated to have to be leaving at all, let alone coming back to more snow, and not a whole lot else. Which is exactly why, I took the GRE’s the following week. My grad school timeline got a little altered to what I thought it would be, but that silly piece of the puzzle that was holding me back from applying is OVER. It’s really happening…
And now here we are. Next up on the itinerary is Las Vegas. This trip has taken some various transformations, and unfortunately, there was another little blip on the radar and I’ll be managing one IV antibiotic while I’m there. There will be two days of their Youth Transition Jamboree (the same group I virtually presented for in Reno last year) and then the weekend will hopefully consist of food, fun, and foolishness. It definitely won’t be spring break style, but at this point, I can’t say no to just having 80 degree weather! Can’t wait!!!

I may write about it….
But… you know what they say.

xoxo

"Ruin is the Road to Transformation"

I always put off writing these…

I don’t know if it’s because it just seems more and more overwhelming with the amount of time that goes by, or that sometimes things just don’t seem deep or inspiring enough to commit to clicking the “publish” button. Either way, I hereby pledge to stop making excuses and just write when I feel the urge (I still write… just not here!) If it bores you… don’t read it! Simple enough.

Judging by the old saying, “teach what you know,” I guess it really isn’t much of a surprise that I work in the field of transition.

I have totally accepted and embraced the fact that we’re all in an ongoing state of transition. Like learning, I like to say, “When you’ve stopped transitioning…you’re dead”

To jump right into it- I moved again. For various reasons that come with living on grant employment, the last few months were really tough. Really tough. A sort of tough that I have not felt since college. It was sickeningly familiar, which made it even worse. I knew, and kept

telling myself it would get better, but there were definitely days when it felt like it wouldn’t. I started to get in a slump where I felt lonely, trapped, and just in one of those, “Why am I even doing this?” modes, when the frustrating experiences, including trying to advocate for my own health needs on top of advocating on behalf of everyone else, just seemed to outweigh the empowering, energizing moments.

Then someone said something to me that was one of the biggest a-ha moments I have had in a long time. It was one I had come to before, but for some reason I needed it in another context for it to finally take. “It’s better to be [one of those people you complain about] a small town Maine girl, who got married at 18, has never left the state and content at the local bar then to know there’s so much more out there and believe you are destined for it, but not do anything to get it, and just sit watching life go by.”

After being initially knocked off guard that my pity party had been so drastically interrup

ted, I realized it was true. Sure, I’ve had a lot of opportunities come my way, but to keep moving forward I can’t just sit refreshing my inbox, waiting for things to fall in my lap.

Finally, when things had gotten about as bad as they were going to, I realized it was time to take charge and start building back up again. I knew I needed to move back home, and I’m lucky I was able to. I swallowed my pride, and left a town I had never grown attached to as hard as I tried, and after yet another U-Haul rental, some pizza and beer for the people who helped, and a lot of organizing and packing/unpacking, I get to spend the last month of summer 2010 with my family, and sleep with my kitty again.

Beyond all of this however, my work life didn’t stop. One thing about this work is that even when the funding stops, the work doesn’t. And somehow- we have to just keep going. As I waited for the giant 8 ball that was my professional life to tell me what I would be doing in the coming months, I attended a two-day meeting in DC.

The meeting itself was an interesting experience, but beyond that,

the trip was yet another turning point for me (yea… I know- let’s rename this blog “Mal’s turning points in DC” shall we?) Not only was it the first time I flew home by myself (fantastic might I add) but also I somehow ended up in a pseudo suite, with a king sized bed, and a balcony overlooking the Potomac River.

So there I am, standing on my balcony, with the summer breeze tickling my face, thinking how my life could not be anymore ironic if it tried. I had just used a credit card to buy a magazine for my flight home to small town Maine, and here I am, not knowing where my life is even going to be in the next month, and I’m on a hotel balcony in DC. My only conclusion was that,if that was rock bottom, then damn. I’m a lucky girl. Stuck between rock bottom, and “I have

arrived…”

And I know that I am lucky, but it does keep coming back to me in different forms. Another thing I have realized is that while I may not have the same group of best friends who I can immediately meet up with at Applebee’s in a pinch I have some amazing people in my support network, and a wealth of knowledge and experience that you can’t even really pay for. Not many people have stayed up talking about Broadway shows with someone who was on tour with Miss Britney Spears herself. My Iphone is a treasure trove of not only connections, but also amazing people who serve as friends, safety nets and an undying support system. It’s pretty crazy to even think about. Want some connections on Broadway- check. Need help looking into programs at Harvard or Yale? Check. A place to stay in L/A. Check. Of course it’s weird to

think that if I were home on a Friday night in Boston or DC I wouldn’t have to be alone as often as I am, like in the place that I actually live, but for now it works, and I have people to see wherever I end up in this crazy country of ours!

As the living situation falls into place for now, until I decide where I want to be for more than eight months, my professional life is slowly settling into an exciting rhythm of energy as well! I am now a proud employee of the NEW Got Transition National Center [for Healthcare Transition]. We have an incredible team, who truly share in the vision of involving young people, and changing the system for the better.

I’m really excited for a new beginning, and with that I have also made a vow to myself, to not take anything for granted. 25 is too young to be jaded and to start being “over” traveling all the amazing places I get to go. Recently I was in Albuquerque, and was so taken aback by the view as we flew over the mountains I remembered how I used to feel every time we took off, whether it was just the one-hour flight to DCA, or all the way to LAX, and that is how I want to look at everything I do. Yea, it’s hard. But it’s also fun and exciting and I’m damn lucky to be doing it! If we, as the “young leaders” are already getting tired of this game, then we really are in trouble.

So that’s where I’m at right now. I’ve fallen; I’ve gotten up, brushed myself off and showed a good number of people, that I’m not going anywhere any time soon. I was told once that my professional mantra aligns with the energy I bring to the sometimes monotone vibe of what we do, and does indeed make me the “cheerleader” whether there are several thousand others or not. So to this next chapter of my life, both home and professional, all I have to say is, “BRING IT!”