Monday, July 22, 2019

Access + Ability at the Carnegie Museum of Art

One of my favorite things about working in Oakland is how close it is to some of Pittsburgh's best cultural attractions, especially the Carnegie Museums of Art and Natural History. While it's true that I'm often at work during their open hours, on Thursday nights they stay open until 8 PM - their cafe and fantastic coffee bar stay open late, too. So it's the perfect time for me to check out the exhibits.

I'm SO excited to be able to talk about one of the current exhibits at the Carnegie Museum of Art - Access + Ability. The exhibit is organized by Cooper Hewitt, a Smithsonian Design Museum in New York City (actually housed in the Carnegie Mansion!). It showcases all sorts of assistive devices and technology. It really spans the whole spectrum of disability - from UNO cards designed specifically for people who are colorblind, to a cane with a sensor that depicts objects from the waist up that a blind person might not otherwise know about.
I had a few personal favorites from the exhibit. The first was this voting booth designed to be fully inclusive - it has headphones that can translate to multiple languages, a touchscreen tablet that can swivel down lower so that wheelchair users can reach it, and a large pad with arrows on the side for people who struggle with a touchscreen. The device even has the ability to pair with a smartphone, allowing voters to select their choices ahead of time and then transfer them to the device to confirm. I love the thought put into this design, and how many different concerns it considers.
This jacket is one used in Germany by a symphony. It takes the music being played live and translates into tactile vibrations, so that patrons who are deaf or hard of hearing can enjoy the music. Different sections on the jacket represent different sections of the symphony (strings, brass, etc.). I would love to see this brought to Pittsburgh - it's so inclusive and helps the arts be open to everyone!
Finally, I had to highlight this intersection of form and fashion. These are stylishly designed prosthesis, allowing users to customize their prosthetis and make it their own. I love anything that makes adaptive devices stylish - things that serve their purpose but look good, too. Just like clothes can allow a person to express themselves, their prosthesis can, too!

It was so amazing to see this exhibit on multiple levels. The first is that the exhibit exists at all. This is huge in terms of representation - it's not an exhibit in a museum that focuses on disability. It's an exhibit in a mainstream museum, open to all. The exhibit was also really well done. It wasn't condescending or preachy, it was just educational and informative and interesting! I also loved how interactive it was - they had so many stations set up throughout the exhibit where you could actually touch things.

If you're in Pittsburgh, or nearby, DEFINITELY go check out this exhibit before it leaves in early September!

Now, if only the Cafe Carnegie would provide plastic straws upon request instead of the paper ones they currently have...

Wednesday, July 17, 2019

My Year as Ms. Wheelchair USA

Tomorrow I head back to Stow, Ohio for the crowning of the next Ms. Wheelchair USA. I can't believe how quickly the past year has gone by! It's still surreal to think that a year before my crowning, I could never have imagined that I would take part in a pageant. It's been such a fun, exciting year. I've gotten to do some really cool things that I definitely would have gotten to without my crown.
For example - getting to go on the field at a Pirates game and meeting Leslie Odom, Jr. are definite highlights that stand out!
But of course, my year was more than just pageant-waving and smiling for pictures with my crown on. Being invited to be on AT&T's Advisory Panel on Access and Aging and getting the chance to speak at the SciAccess conference were both incredible opportunities to talk about the importance of advocacy and accessibility. I've also been working behind-the-scenes all year, making connections and building a community, all leading up to my upcoming Ramping the Divide Summit. Even though it's technically a week after the end of my reign, it still seems like the perfect culmination of everything that I've been working on.
I want to think you all for your support this past year! You've all been so wonderful and enthusiastic and excited for me and I appreciate it so much.

Monday, July 15, 2019

Amazon Prime Day

Before I start the post, a quick programming note: I'll post when I can until my Summit is over, but it will likely not be my normal 4 posts a week! Planning the Summit has been super exciting, but is also basically like doing a second job on top of my normal 9-5. There are only so many hours in a day, and I have to prioritize, but I haven't forgotten about you! Now, back to my post...

In honor of today being Amazon Prime Day, I thought that I'd share some of my favorite recent Amazon purchases. I can't guarantee that any of these are a Prime Day Deal, but check them out and then check out the special sales, too.
Travel Jewelry Organizer
I have about a million different travel jewelry cases, but none that are really exactly what I'm looking for. I'm hoping that this one is finally the answer! I always need more space for necklaces, rather than earrings/bracelets/etc., and this one looks like it just might do the trick.

iPad Case with Pencil Slot
I already had an iPad case with a built-in keyboard, but it's a little heavy for me to carry around when I just want to do some reading in Schenley Plaza after work. This case is might more lightweight, and even has a built-in slot for my Apple Pencil, which I love.

T-Shirt Dress
Just a simple, comfy t-shirt dress to wear when you don't want to have to think too much about your outfit. It's probably not the highest quality ever, but it's soft and not see-through, and I'm sold.

Oil Control Sheets
These are an absolute necessity for me! There's only so much that powder can do before it'll start to make your makeup clumpy and gross. These just work - they get rid of oil and don't mess up your makeup. I have these on me at all times!

Pet Brush
Because Lily doesn't shed, we have to make sure we keep her brushed so her fur doesn't get all knotted and tangled. The last brush that we had for her started losing tines every time we tried to brush her, so it was time for something new. This one has a great shape/grip and doesn't hurt, either.

Spray Sunscreen
I've written about this a few times now. It doesn't have alcohol and is lightweight enough that it doesn't feel greasy on your skin. Perfect thing to pick up for the summer!

Laptop Backpack/Bag
I bought this to use as a carry-on for a flight, and while it didn't exactly work out for me for that, I have started using it as an everyday bag that I keep on the back of my wheelchair. It has a padded laptop pocket, plus a slot for my iPad, and lots of other little storage pockets, too.

Clear Quart-Sized Bag
One more travel-related item - a clear quart-sized bag, TSA-approved. Nothing fancy, but it's a definite step up from the disposable Ziploc bag that I was previously using.

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

Monday, July 8, 2019

Loving Leopard

This weekend, we pulled off an (early) surprise party for my dad's 60th birthday! I am not a surprise party person - they give me lots and lots of anxiety and stress - and this was even harder because we were holding it at our house, and needed to let him know that something was going on without letting him know it was something for him! Luckily, I was able to convince him to drive me to Drybar before the cookout we told him was for me and my friends, so it worked out well for everyone.
It was really fun to bring all of our friends and family together to celebrate. For as long as I can remember, my parents have always loved throwing parties and entertaining, so this was the perfect way to celebrate his birthday. We'll actually be at the pageant again for his birthday, so we had to do something for him! A surprise party seemed to be the perfect thing.
Of course, I had to pick out a perfect outfit for the party, too. Leopard is in this summer, but I've been an animal print fan for years and years. So now, I can just be glad that there are so many leopard print options for me to choose from! How cute is this leopard wrap skirt from Nordstrom Rack? And it goes perfectly with this smocked peplum top from Madewell. I love them together - it's put together without being too much (although to be fair, I always err on the side of too much rather than too little).

I can already tell that this will be a go-to outfit for me - the black and white is so me, and the print gives it an extra pop and keeps it from being too plain. It worked for a party at our house, but I know it'll work for lots of other occasions, too.

Friday, July 5, 2019

Friday Favorites

I hope that you all had a happy Fourth! I celebrated at The Frick again (like I did two years ago! I wrote a post about it here - it was in my first month of blogging!). We had a delicious lunch at the Cafe at The Frick, then walked around Frick Park again before going to get soft-serve ice cream at the Millie's Summer of Soft Serve pop-up. It was such a perfect, relaxing way to spend the day.

I'm enjoying an extra-long weekend today (as I assume many of you are, too), so today's post is going to be brief! I haven't spent a lot of time online this week, and it's been a nice break. I've been speeding my way through some books, though, so expect an updated reading post soon.
ONE - Madewell Tie-Back Dress
I wore this on the Fourth, but it's not a holiday-only dress. It's a great, easy but cute summer dress - the slit in the front makes it cooler than a typical maxi dress. I love the tie in the back, because the adjustability means that it fits me really well! The blue color is mostly sold out, but there is a lilac version, and it's on sale, too!

TWO - Live Action Ariel Casting
They announced the casting for Ariel in the live-action remake that they're doing, and I'm so excited. I love Chloe X Halle, and I think Halle will be an amazing Ariel! It's one of my favorite Disney movies, so I can't wait to see the remake.

THREE - Drybar Detox Clear
I've been a loyal Drybar dry shampoo user for a while now, and I'm really loving their new clear version. It's a bit lighter than the regular version, but still holds up well against oil and really doesn't leave any powder showing on your hair. I'm sold!

Wednesday, July 3, 2019

Ramping the Divide Summit: Accessibility in Pittsburgh

Today's post is one that I have been wanting to publish for a few weeks now, and I'm so excited that everything is official and I can share the news!
On Saturday, July 27, Accessible YOUniverse, alongside The Dane Foundation, will be hosting the Inaugural Ramping the Divide Summit. The Summit will be a hands-on workshop, where members of the disability community and interested allies come together to discuss the "state of the union" of accessibility in Pittsburgh, and come up with priorities to address moving forward. I'm especially excited because I'll be holding the Summit in honor of the anniversary of the signing of the Americans with Disabilities Act, which is perfect.

I think it's so important to bring the disability community together to discuss the pressing issues, and to make sure that whatever is tackled first is what we decide is most important! Too often, other people make decisions for us, but I want to make sure that the voices of people with disabilities themselves are highlighted.

I'd love for you to join me at the Summit! All of the event and registration information can be found here. I'm also looking for volunteers for the day of! If you're interested, send me an e-mail at I'm so excited, and I'd love to have you all there with me!

Tuesday, July 2, 2019

Flying When You Use a Wheelchair

Summer, to me, always means summer vacation. When I was growing up, we would always spend a week at the beach - first it was Ocean City, New Jersey, then when I was a little older it was Hilton Head, and occasionally Myrtle Beach. As my sister and I have gotten older, we’ve lobbied for other types of vacations, too - DC, New York - ones that are not as relaxing but area more exciting.

This year, we actually don’t have a summer vacation planned, because we have a lot of long weekend trips happening. Many of them are driving, but we did fly to Dallas earlier this year. And while I’ve written before about what it’s like to travel with a disability (you can read that here), I’ve never discussed flying, which is its own beast.
To start with - I almost titled this post “Flying In a Wheelchair,” but thought that would be misleading because the whole point is that I DON’T fly in my wheelchair! When I was younger, this wasn’t as big of a deal, but as I’ve gotten older and need more support, this has become increasingly difficult.

So - if I don’t fly in my wheelchair, what does happen? I’m going to start from the beginning of the airport process, right when we arrive. In my travel post, I talked about the number of THINGS we have to travel with. These all have to get packed into the car, and then unpacked again at the airport - we always do curbside check-in because it would take a while to lug everything through the check-in line inside. The good news is that you’re not charged for checking medical equipment, but you still have to be okay with checking it and crossing your fingers that it’s not damaged in the cargo hold. You can also carry on as many medical items as you want, but that’s more that you have to wrangle when you’re stressed and boarding. So we generally try to find a balance - carry on things that seem like they might get damaged in cargo, but check everything that we reasonably can.

Once we’ve checked our bags, we head to security. We do get to go to a separate accessible line that is generally much, much shorter than the general security line - but this #WheelchairPerk goes away very quickly, because we also have to wait for a female TSA agent to pat us and our wheelchairs down, and this can take a while. They pat us down, and then swipe tester strips over every possible surface of our wheelchairs to check for explosives. Because the sensor can also be set off by things like pesticide, we often have to get swiped more than once (I seem to have particularly bad luck).

After that, we head towards the gate. Usually, my sister and I both get something to eat and make sure we use the bathroom as late as humanely possible, because the bathrooms on planes aren't accessible! But we can't wait too long, because we have to preboard to gate check our wheelchairs, which means we have to report to the gate 30 minutes before the scheduled boarding time.

I know that preboarding sounds like a perk, but when it means you have to be there 30 extra minutes early, it's more like another required hoop we have to jump through. At the gate, we gate check our wheelchairs, which means we get to drive them down the jetway, as close to actually taking them on the plane as possible. But at the end of the jetway, we have to get out of our chairs and get carried on to the plane. They do have an aisle chair available for using inside the plane - it's skinny enough to fit between the aisles on the plane - but it has almost no support, and I can't hold myself up sitting in it. Once I'm out of my chair, staff at the airport takes it back down the jetway, down an elevator, and loads it into the cargo area of the plane. My dad always does his best to explain to the staff how to move the chair, and we've gotten incredibly lucky so far, but we never know if we'll get our chair back in one working piece.

Sitting on the plane comfortably is yet another challenge, and one that currently requires the use of many, many pillows. Airplane seats are too big for me - my feet don't touch the floor - so there's lots of propping involved in getting me comfortable. And no matter how good I feel a few minutes after takeoff, by hour three or so, everything starts to get sore. I also can't really eat or drink easily on a plane (it's the same issue of lack of support), so I'm always very ready for the flight to end.

Then when we land, the whole process of bringing the wheelchairs around and back to us has to repeat itself. On a good day, this can take 30 minutes; if the elevator is farther away from our gate, it can take even longer. As soon as we have our wheelchairs and confirm that they work, my dad takes off ahead of us for baggage claim, because by that point, everyone else on our flight has already picked up their luggage. This is also usually when I beeline for the airport Starbucks, because I am worn out.

All this being said - I actually like to fly! Long drives aren't really any easier for me, so flying is my only option for going anywhere more than 5-6 hours driving from Pittsburgh. But I do wish the process were simpler. I didn't even mention yet that there are so many smaller airplanes now, and those don't even have the space in cargo to fit my wheelchair, so I just can't fly on them. What I'd love, more than anything, is to be able to take my wheelchair on the airplane. If you want to learn more, check out All Wheels Up - it's an organization founded by another SMA family, and dedicated to working towards increased airline accessibility.

Monday, July 1, 2019

Speaking at SciAccess

June flew by for me, mainly because I spent two weekends in a row traveling. I love to travel, but it's also pretty tiring for me, so I don't say yes to two trips in a row lightly. This trip, however, was easy to say yes to - I was asked to speak at the SciAccess conference at Ohio State University in Columbus, Ohio.
As you might be able to guess from the name, the conference was all about science + accessibility. It covered all different aspects of those intersections, and even included talks given by Anousheh Ansari, the first female privately-funded astronaut, and Temple Grandin, an animal science expert and autism advocate. It was amazing to see so many people coming together to talk about accessibility in the sciences.

I spoke about my own personal experiences with accessibility in the sciences, both as an undergraduate while studying engineering at Carnegie Mellon University and now with my work and studying in public health at Pitt. The talk went really well, and the very best part was the current students who came up to talk to me afterwards about their own experiences, and how they connected with hearing about mine. I'm hoping to continue working with some of them to continue to improve accessibility in the sciences, and that's so exciting!
I'd actually never been to Columbus, even though it's only about three hours away, so it was exciting to have the chance to explore a new city. I stayed about 10 minutes away from campus, in downtown Columbus in a great pet-friendly hotel. I didn't have a ton of time to explore, but I did get a chance to walk around a bit and check out some restaurants in the area, and stumbled on a really cute outdoor farmer's market right across the street from our hotel! Of course, I also had to make sure I made it to the zoo - Columbus's zoo is run by Jack Hanna, so it's basically a "celebrity" zoo. I even got to feed a giraffe, so basically... life made.