Tuesday, September 18, 2018

A Little Update

I know I haven't exactly been following the posting schedule that I said I would, so I wanted to give a little bit of an explanation of what's been going on behind the scenes.

Obviously, I don't post about every single thing that I'm doing, or everything that's going on in my life. Some of that is just because the day-to-day of my life isn't always exciting, some of it is because I don't feel comfortable sharing every single detail of my personal life on the Internet, and sometimes the timing just isn't quite right. And right now, in my life, there's a lot of the third going on.

There are a lot of really amazing potential opportunities going on behind-the-scenes right now, but they're just not quite at a place where I have anything interesting to share. However... they're all taking up my time and energy, and with work, and school starting back up - my extra time is just really limited. I love writing here and sharing with all of you, but it's been a challenge to balance everything these last few weeks. I am absolutely not going to stop posting here... but I also can't promise I'll stick to a strict posting schedule.

You might think that this sounds obvious and easy, but it's actually really hard for me not to commit and stick to a schedule when I say I'm going to. I really don't like to flake, whether it's on plans I've made with friends, or posting here. I really pride myself on being dependable, so it's difficult for me to accept that sometimes, something has to give. And I know that I have to prioritize my health, which means getting enough sleep during the week. So I'm really trying to make sure I don't skip an hour of sleep to stay up to write a post after the rest of my day is over.

So really, this post is just to say - I'm still here, I'm not going anywhere, but I am working on balance. And know that skipping a post or two now is going to give me more time to work on some really cool things that will lead to even better posts down the road. I hope that you'll bear with me while I figure things out!

Monday, September 17, 2018

Thrival Festival 2018: LIFE.CODE

Normally, I talk about events that I'm involved in after they happen, so that I can recap them a bit, and share the experience with you. And I'll probably still do that for this one, as well, but I also wanted to make sure I shared about it ahead of time, so that other people get the chance to attend if they're interested.
Photo via
Thrival started in 2013 - I like to think of it as Pittsburgh's version of South x Southwest, with a technology conference plus a music festival. This year, my sister and I worked with the team to help make Thrival more disability-friendly, and I'm also honored to be part of a panel discussion about Smart Cities on Thursday at Phipps.

Thrival has something for everyone, no matter what your interests are. The Humans X Tech portion focuses on people, how we interact with technology, and what that means for us as a society and our future. Wednesday evening is the Future of Work Symposium at the Kelly Strayhorn Theater, Thursday is the LIFE.CODE Summit at Phipps (where you can come to hear me in conversation!), and Thursday night is the LIFE.CODE Interactive Experience at the Carnegie Museum of Art. I'm really excited for the Interactive Experience - I love the Museum of Art all the time, but I think it's going to be the perfect backdrop for the event. One of the co-founders of Wired will be speaking, and there's also a really cool silent disco (which obviously, I'm now a big fan of - remember this?).

And then, of course - there's Music x Arts. In previous years, this concert has been held at the Carrie Furnaces. While that venue is really cool, and an innovative use of space, it's not really the most accessible to people with disabilities. So this year, the concert will be held at the Highmark Stadium at Station Square, and the team at Thrival even worked with us to build an accessible viewing platform in the general admission section. My sister and I were so excited to be able to work with them, and so appreciative for how open they were to our suggestions! The lineup looks pretty great, too, with a mix of some big, national names and local artists. I cannot wait!

If any of you decide to come to any of the events, let me know in the comments - I'd love to say hi!

Wednesday, September 12, 2018

My DC Trip Recap

I’ve been mentioning my trip to DC for my 30th birthday in all of my posts so far this week, so I wanted to share a recap of my time there - where I stayed, what I did.

I love traveling to DC. It’s only a 4-5 hour drive, so my sister and I don’t have to worry about sitting in the car uncomfortably for hours without making a restroom stop - that’s ideal for us. In general, the city is fairly accessible (though we hit a few bumps in the road this time, which I’ll go into below). Plus, there’s so much to do in the city, and so many places to explore.

We stayed at The Mayflower again this trip, which is such a beautiful and historic hotel. Even exploring the hotel itself is an experience - the mezzanine level has historical artifacts on display, and has an amazing view of the gorgeous chandeliers in the lobby. It’s also really conveniently located near the Metro, which is what we usually take to get around in DC.

Like I mentioned above, though, this time we got thrown for a bit of a transportation loop. The Metro elevators were out at BOTH of the stations nearest to our hotel. We were able to take the bus to and from our trip to the National Zoo (one of my favorite free things to do in the city!), but on the way home, it was absolutely pouring. We still had dinner plans, and didn’t want to have to walk to the bus stop and wait for the bus in the rain, so we had to find an alternative route of transportation. Luckily for us, DC is one of the cities that has accessible Ubers, so we were able to test them out.

Since my sister and I both use wheelchairs, we had to order two separate Ubers, because each vehicle could only fit one wheelchair. This wasn’t necessarily the cheapest option, but it did work out well for us overall. There was a bit of a delay between when we requested the Uber and when it was actually available (20-30 minutes) before dinner, but it was quicker later in the evening. All of the drivers knew what they were doing, and were able to tie down the wheelchairs and use the ramp/lift smoothly. I actually rode in two different “types” of vehicles - one was a rear-entry, where the back seat flipped up and had space for a wheelchair, and the other was the more standard side entry with a hollowed-out wheelchair space in the middle. All in all, a really great experience, and something I’d love to see available in more/all cities!
The other big reason for my trip? I got tickets to see Hamilton at the Kennedy Center. Yes, I’ve seen it before (twice...), but honestly, I’ll keep going back and seeing it as many times as I can. The show truly is that genius, and there’s so much happening on stage at every minute that I see something new and different every time. And even though the musical is, in many ways, all about New York (the "greatest city in the world") there's just something about seeing the show in the capital, where there are so many reminders everywhere of the real people and real events the show follows. The Kennedy Center in itself is such a tribute to the arts and their importance, and seeing Hamilton there was incredibly special.

The rest of my trip was mostly visiting with my friends, and going out to eat. I love trying out new restaurants when I'm traveling, but when I'm in DC, I can't NOT go to Zaytinya. It's one of José Andrés' restaurants, and it's just so good. I also had a really good brunch at District Commons, which I mostly picked because it was near the Kennedy Center - I was pleasantly surprised! I also lucked out and made a last minute dinner reservation at Le DeSales, which was so close to my hotel that I could see it out of my window. I picked it because I was worried it'd be another downpour and I wanted something convenient, but the food was amazing and the service was so good - friendly but not overbearing.
My final food-related stop for the weekend was Milk Bar. I'm a huge Masterchef fan, and have been wanting to try out Christina Tosi's infamous Milk Bar for a few years now. Since we don't have one around here, I went all out and ordered both the salted pretzel cake AND the crack pie. Let me just say - they did not disappoint, and the crack pie is very aptly named.

I was not ready to leave and head back home on Sunday - there was so much more that I still wanted to do! I guess I'll just have to plan another trip back soon.


Tuesday, September 11, 2018

Influence Nation Summit

I have been planning my birthday trip to DC for months. I had the dates picked, the hotel picked and room reserved, and my friends invited since at least May. But then, just a few weeks ago, I saw a tweet by Cause and Social Influence about a Summit that they were planning, which just happened to be across the street from my hotel, a day earlier than I was supposed to arrive. To me, this all seemed like too much of a coincidence to pass up, so I convinced my family to head down a day early so that I could be at the Influence Nation Summit.

I'm so glad that I was able to make it. The day was a bit of a whirlwind, but it was so exciting and inspiring. I had to chance to hear firsthand stories from leaders across many different types of social movements. We heard from leaders working on sustainability, gun control, voting, sub-minimum wage, sexual assault - such a variety of topics and experiences!

It's hard to distill what I took away from the Summit succintly. It was incredibly powerful, and really made me think about how I can grow my own advocacy work. During a talk about communicating your work, I was really struck by the observation that: "It's difficult to create urgency if people don't know it's a problem." I think this applies to so many different kids of advocacy situations, but it especially made me think of disability and accessibility issues, which so many don't realize are still issues. It made me think hard about what I can do to raise the call to action - that before people are going to be willing to work towards solutions, they need to be made aware how poor the current accessibility situation is.

There were two more highlights of the Summit, for me. The first was hearing Fred Guttenberg speak. Fred is the father of one of the young women who was killed in the Parkland shooting. He is now dedicating his life to gun control reform, and it was incredibly inspiring to hear how passionate he is about an issue that has touched his life in such a devastating way.

The other was hearing from Tukwini Mandela, one of Nelson Mandela's grandchildren. Her message really summed up a message that was repeated by others all throughout the day - a message of hope. I think that's so important to focus on, because it's so easy to get bogged down by all the bad things happening in the world, by all the things going wrong. But if there's one big takeaway I had from the Summit, it's that there are so many people - both the speakers, and the attendees - who are working hard to make things better.

Monday, September 10, 2018

Thirty, Flirty, and Thriving

I spent the past weekend in DC, celebrating my 30th birthday with my friends and family. I'll share more about the trip itself in other posts, but I wanted to use this post to reflect on turning 30.
Everyone always asks you how you feel on your birthday - if you feel older, different. And to be honest, I never do. I love my birthday, and I love celebrating, but to me, being 30 doesn't feel much different than 29 or 28 or 27 did.

But if I just think about turning 30, as a whole, it feels like such a real, adult number. It feels like an age at which I should have everything figured out - be settled in my career, have my own place, really know where I'm going in my life. But currently... none of that is true. I still am very much figuring things out! I'm still a student, which I certainly never thought I'd be at 30, and still figuring out how exactly I want to move forward.

Everything I've done over the last year - my Health Activist Fellowship, my advocacy work, my Ms. Wheelchair USA win - has been incredibly exciting. But for as many opportunities as those things have introduced into my life (which I'm incredibly excited for!), they've also introduced just as many questions and uncertainty. Even just a year ago, when I turned 29, I would never have predicted that my life at 30 would look like it does now.

So I'm hoping that 30 is my year of opportunity and growth. That doesn't mean that I need to have everything figured out at 31, but I want to make sure that I don't pass up any chances that come my way. It's not about having things figured out, and checking off accomplishments on a list, but about making the most of what I'm offered.

And of course... I can't end this post without the biggest thank you to my friends and family who came to DC to celebrate with me! They have been so supportive of and excited for me this past year, and there was nothing I wanted more than to be able to spend my birthday in their company. I've always prioritized strong friendships, but as I get older, it gets clearer and clearer to me how important it is to have friends and family who encourage and support you.My friends and family are my support system, my sounding board, my cheerleaders, and so much more - I am grateful to have them in my life, and my birthday wouldn't be the same without them.

Wednesday, September 5, 2018

Sleeping Like a Baby

I love to sleep. I talked about being a night owl in Friday's post - but that doesn't mean that I don't like sleep. It just means that I go to bed late and wake up later. If I don't set an alarm, I could easily stay in bed until noon.

I'm sure that part of that is because of my SMA, but it's also just that I love sleeping and being cozy in a comfy bed. I have a thing about blankets... I cannot resist buying soft, comfy blankets whenever I see them. I have Disney World souvenir blankets, animal print blankets, faux sheepskin blankets - I love them all. And I'm just a much happier, nicer person when I get enough sleep. Believe me... ask my friends and family.

The thing about me sleeping, though, is that when I'm in bed, there's no tossing and turning. I can't turn from side to side, so once I'm laying down, I have to be really sure I'm comfortable. And something weird, that you don't really think about until you're forced to, is that your head is HEAVY when it's dead weight laying down on a pillow. And I was sleeping so soundly, and not waking up until the morning, that all of that pressure was giving me a little sore on my ear. It was nothing major, and it kept going away and coming back again, over and over and over. So finally, I did a little Amazon Prime-ing, and found the perfect solution.

Did you know they sell side-sleeper pillows, with little cutouts for your ears?! I definitely didn't know, but I'm so glad I found out. It's made sleeping so much more comfortable, which in turn makes me a much happier person. I think this pillow is perfect not only for people who can't move around easily in bed, or people who use breathing masks at night, but really for anyone who sleeps on their side at all. Not only does it have the cutout to take pressure off your ears, it's also shaped so that your shoulders don't hit the pillow awkwardly. I was really worried it wouldn't be as comfortable as my usual pillow, but it's a really soft foam that is so, so comfy.

I wanted to share this pillow with all of you because I feel like I waited way too long to buy this. I'm sleeping so much happier, and I want any of you who are side-sleepers to be able to feel the same way!


This post isn't sponsored, but does contain an affiliate link - I may earn a small commission if you make a purchase.

Tuesday, September 4, 2018

Take Me Out to the Ball Game

Since I was crowned Ms. Wheelchair USA a few months ago, I've gotten to do some pretty amazing things. I got to be on a podcast (here) and even got my own day (here), which is something that I never could have imagined! And this weekend, I was lucky enough to add one more thing to my list of incredible opportunities - I got to be on the field at a Pittsburgh Pirates game.

I wasn't really sure what to expect going into the game, but it turned out to be such a fun day! My family and I, along with the other people being recognized yesterday, got to go down onto the field before the game started. They lined us all up, and then we waited a bit and got to watch then get the field ready for the game. It was really cool to get to see that so close up, but also really, really hot - it was over 90 degrees yesterday!

When it was my turn, I got introduced and got to wave to everyone on the big Jumbotron, which felt pretty cool! After the first ceremonial pitch was thrown and the National Anthem was sung, I also got to go onto the field to exchange the opening lineup cards with the umpire and the other team, which was a really cool surprise. I even got to meet the Pirates Manager, Clint Hurdle, who was incredibly kind to me and my family. And the Pirates ended up winning, which was the perfect end to the afternoon.
For those of you who don't live in Pittsburgh, you might not realize how big sports are here. The Pirates, the Steelers, the Penguins... Pittsburghers bleed black and gold. So being recognized on the field during a Pirates game - that's something that means a lot to me, and something that I could never have imagined getting to do.
Clearly, this was a huge honor for me. But it's also meaningful because of how amazing PNC Park is with accessible seating options. Sometimes, there will only be one or two options of accessible seating at venues - usually, really good (and expensive) seats, or ones way, way at the top. But PNC Park has them all over the park - options in every level, and every  price range. It really makes it a lot more enjoyable to go to a game knowing that you're not being quarantined to one area of the field! It sounds like such an obvious thing - getting to choose where you sit - but it's something that is so often neglected for accessible seats.

Of course...getting to be on the field means one more thing - I needed a good outfit. I knew that I didn't want to just wear a Pirates t-shirt - that's just not my thing. But I still wanted my outfit to be on-theme and appropriate! So I went with the Pittsburgh uniform of black and yellow. I ended up wearing  this dress from H&M, which was the perfect yellow gold shade to show my Pirates pride.

In case you're looking for something to wear to a Pittsburgh game of some sort, or you're just in the market for a yellow dress, I've pulled together some more options below.

(This post contains affiliate links; I may earn a small commission from any purchases you make.)