Tuesday, May 22, 2012

Letter to Your Younger Self

Dear Younger Mal,

So hey!   Here you are!  All those years, of emo writing, dreaming, and aching for the city, and knowing “there’s more out there,” paid off… cause it’s happening.  You made it happen.  How about that?  Proud of you kid….

Knowing that it really all will be ok eventually, and before we turn the page for real, I want to remind you of some stuff.

A lot of people will come into your life, and many will go.  Let them go.  The ones that stay, you won’t need to chase.

You will get braces.  And contacts.  And it will be one of the best decisions of your life.  You’ll look in the mirror and not really recognize yourself, but you’ll smile and say, “hey… look out world.”

People will say they love you.  Maybe not always the way you want them to, but they will make you who you are, and regardless, of how they mean it.  They mean it.

Denny’s is only good after being in a show and only having iced coffee all day.  And it’s really not about the food.  Except cheese fries.  Those are ok. Sometimes.

It’s not just you.  Your life really does have a soundtrack, and the right songs will continue to play at the right time…

Also, your life is a little crazy.  You will have incredible experiences, and it will not even feel real.  Then you will be very bored sometimes.... There's always more to come.  Enjoy the down time too.

Take care of yourself.  Contrary to what people may tell you, it’s not about who works the most, and the world will not end if you take a day off, to sleep… or maybe go to the mall.

Oh… also, about that.   Real therapy probably would’ve been better than all those semi-annual sales… and a hell of a lot easier to move.

Your friends are right... You do have THE COOLEST family.   Ever.  Enjoy every minute by that pool, and listening to the stories you've heard a hundred times.  Trust me.  You'll be glad you did.

You’ll also be glad you went home on the weekends in college to see Maisy.  She’s incredible, time goes so fast, and I promise you didn’t miss anything in Farmington.

SoCo and Lime shots will not gain you friends.  Those are not your friends.

You will have friends though.  All over the country, and some right nearby who really will be there, and won’t care if you’re dressed up, or sick in the hospital.  Keep in touch with those people.  They’re real.

It will all come together.  All those pieces of you that do make you feel happy and unstoppable, you won’t have to leave any of them behind, so don’t even worry.

I know, I know, what you really want to hear….. so guess what?  He IS out there.  And you knew…. He won’t be in Maine.  The best things happen when you’re not trying.  Keep living for you, don’t change a thing and make the most of every moment.  You’re doing this right.

It really will all be ok.

Thanks for everything,
Mal 2012

Friday, May 18, 2012

"Til next time. Take care of yourself, and take care of each other."

Today was one of those days where you just have to believe the universe is aligning.  With the good, not so good, and everything, you're not quite sure about yet.

This morning, I received an email that we had lost one of our own.  A fellow advocate, who was in her mere 30's had passed away.  Katie Beckett changed lives for so many families.  I didn't get to know her well, but we had been at many of the same conferences, and I know her mother fairly well.  I won't pretend I knew her well, but hearing of her passing hit me hard.  She was an icon for the young people of my generation with special health needs.

Shortly after hearing that, I had a great, intense talk with the captain of Team Boston.  We talked work, and housing, and what I am not willing to sacrifice to make this possible.   And that is my dignity, and my inclusion.  I have come this far, and I will not go backwards.

I will accept the grad school lifestyle, and eat ramen, and not go out, or take trips, and live in a studio apartment with minimal space.   What I will not do, is be forced to live in SEGREGATED housing, because we need a building with no stairs, and a shower that is safe for us to use.  I am paying 60,000 a year to pursue my master's degree in a program I was accepted to, in an esteemed institution, so I will not be isolated, and segregated from my community of peers who are doing the same thing.  He accepted this, and we are making it happen, with a lot of work, communication, and determination.

After that, I came home, and was able to download videos taken by another incredible Bostonian.  And it's out there.  We have found an apartment that is ultimately accessible, and nice!  And actually within a reasonable budget.  Of course nothing about grad school or Boston is "reasonable."  but it is far more within our range than paying $2000 a month for something that is not accessible.  At all.

Now comes the tough part, where we really make it work, and the money meetings, and talking who gets my time when I'm in school....
And Owen is working with people in Boston who want to meet with him to "figure something out" in terms of work!  Hopefully they can work with him not quite being there yet!

But it IS happening, and I have to believe, that perhaps my "connections" are not just on this earth.

Thank you Katie, for all you have done, for us, for others, and for making us realize the importance of continuing this journey.

I leave you with something that I didn't write.  But that, it sounds like I could've.

Read it here

Amen sister.  You said it.

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.