Tuesday, December 31, 2019

2019 In Review

December seriously seemed to fly by, and I cannot believe we're at the end of 2019 - at the end of the decade. I know that really, this year ending is no different than any other year ending, but doesn't it being the end of a decade make it feel so much more important?

I don't want to do a month-by-month recap of 2019 - if you wanted that, you could just go back and read the posts! But I thought it'd be fun to share the things that stick out to me the most from 2019.
This year took me to cities I'd never been to (Philadelphia, Easton, Columbus), cities I hadn't been to since I was super young (Dallas), and cities I've been to but love to visit (DC). Sometimes, especially for a few weeks in the summer, all of the traveling felt exhausting, but ultimately I loved getting to visit all of the places that I did.

Accessible YOUniverse Summit
This was obviously a hugely exciting part of 2019, so it has to top the list. I never expected to found an advocacy organization and hold a Summit, but seeing it come together was so incredible. I was equal parts terrified and excited leading up to it, and equal parts excited and relieved when it was over, too.

Meeting Leslie Odom, Jr.
I mean, I guess this one sounds like I'm bragging... but it really does top my list when I think about what happened in 2019. It just felt so surreal - partially because it came so close to not happening! There aren't words to describe the whirlwind of the morning that led up to our very brief meeting, but then I actually got to meet him and just couldn't believe it.

Access + Ability
The Access + Ability exhibit at the CMOA was one of the most exciting things that I've seen in a very long while. It was a disability-centric exhibit without attempting to be inspiring - it was just a showcase of so many cool adaptations and accessories for different kinds of disabilities. Seeing that kind of an exhibit in my hometown museum just felt huge.

Warhol Museum Gala
Another pinch me moment - being asked to join the board at the Warhol, and then getting to attend such an incredible evening to support the museum! Getting treated to a private concert by Matthew Morrison and Joan Jett was truly once-in-a-lifetime and something that I will never, ever forget. And being a small part of a museum that has made such a huge impact and is such an important part of Pittsburgh is equally unforgettable.

Time With Friends
This isn't one specific moment in time, but rather a lot of them - just spending quality time with the people in my life. It's something that I value a lot - just catching up with my friends, spending time with them, keeping friendships strong! Especially now that my friends have started having kids - it's a different kind of getting together that we do now, sometimes, but no less enjoyable or important.

Monday, December 30, 2019

Home for the Holidays

I hope that you all enjoyed your holidays! The time off was much-needed for me, especially since I got sick the week before Christmas. Luckily, I was feeling better in time to celebrate with family, and I got to enjoy some relaxation, too. There were a few days where I didn't even open my computer! I think my time in college really conditioned me to think that busier was better - it was always an (unhealthy!) competition of who was doing more. Now I'm much better about appreciating the need to take time off to actually work harder and better afterwards.
So this time off, for me, was the perfect combination of relaxing plus spending time with friends and family. I definitely watched my share of Netflix, and I got to really throw myself into reading (so look out for an updated post on what I've been reading next week!). I also finally got to see the Mr. Rogers movie - A Beautiful Day in the Neighborhood. Pittsburgh has had more movies filmed here recently, so it's not that uncommon to see the city on the big screen, but rarely is the movie actually set in Pittsburgh. And Mr. Rogers is such a hometown hero and source of pride for Pittsburghers - it was really excited to see his story being shared. Especially because its a story of warmth and care and just being genuine - that's such an important story to be told. When we got home, we even found the picture of me and my sister with Mr. McFeely, when we were in Pittsburgh's Christmas parade years and years ago.
My family spent Christmas Day slightly differently this year. Usually, we go to mass on Christmas Eve (which we still did this year), and then spend Christmas Day brunch at our house with some of the family on my Dad's side. As my cousins and I have gotten older, though, and "the kids" started having kids, it's become more difficult to coordinate schedules. So this year, it was just me, my sister, my mom, and my dad for most of the day, and we celebrated in our pajamas. It was different, but if there was a year for a chill Christmas, I felt like this was the year.

And don't worry - we still definitely celebrated Christmas with friends and family! Each year, the day after Christmas, my dad's side of the family all gathers at my aunt and uncle's house - we've done it for as long as I can remember! It's where we play the (often crazy) white elephant/grab bag game. I say often crazy because we have a rule of a maximum of 3 gift "steals" per person until the gift permanently becomes yours, and sometimes when it starts to come close to the limit, people will try to hide a gift that they really want. Oh, and one year there was a live lobster. We got together with my mom's side of the family last night - it's a much smaller gathering, but no less fun!
I think my favorite part of the holidays, though, is my family's after-Christmas Christmas party. This is also something that we've had for as long as I can remember, though it's morphed a bit over the years! It started out as my parents friends and family as the guest list for the party, and now, it's my parent's list, plus mine, plus my sister's... so it's grown. Sometimes it's the one time each year that my friends and I are together as a group, and it's always such a blast. And now that my friends are having kids, there's a new generation at the party, too. The more things seem to change, the more they stay the same, right?

Friday, December 20, 2019

Friday Favorites

This week has been a bit of a bummer - I started to feel sick at the end of last week, but this week it really hit me. I have been trying to take it easy and get better, because it's really easy for a cold to turn into pneumonia for me.

In exciting news, though, I heard back from Drybar! They actually reached out to me after hearing about my experience. They were really apologetic, but even better, they are committed to making sure that this never happens again, and that anyone using a wheelchair can go into any Drybar and have a fully accessible experience. It meant so much to hear that their Executive Team had meet meeting and discussing what they needed to change. I'm very much looking forward to my next blowout.
One quick note - I'll be taking next week off from posting, as a holiday break. I did this last year, too, and it's been a nice chance for me to get away and come back with a fresh outlook and fun new posts. I hope that you all get to take a bit of a break as well, and have a very Merry Christmas.

Now, on to the final Friday Favorites of 2019!

ONE - Leslie Odom Jr. Performance
Leslie Odom, Jr.'s new album Mr. is fantastic - he has such a range, and his voice is just so GOOD. He performed on a Little Late with Lilly Singh, and he just looks like he's having an absolute blast (as does Lilly, actually)!

TWO - Flu Season Reminder
Just another reminder that getting your flu shot is important, and it can help to stop really big outbreaks. It's not just about you!

THREE - Encore! on Disney+
So I think I already mentioned Encore on Disney+ - it's a show hosted by Kristen Bell that reunites high school musical casts to come back together and perform their show again... in 5 days. The newest episode is a cast that did Oklahoma!, and one of the original cast members had been in a car accident since his high school years and now uses a wheelchair. They arranged a meeting for him with Ali Stroker, a Tony Award winner for her current role in Oklahoma!. It was so special!

Thursday, December 19, 2019

2019 Beauty Buys

I don't tend to be super experimental with my beauty routine. When I find something that I like, and that works, I stick with it. I'll add in new lipsticks and eye shadows, but for the basics, I don't change much.

With that being said, over the past year, I have made some changes to my most-used items. With 2019 coming to a close, I thought I'd share my best beauty buys from over the past year.

Ouai Dry Shampoo
This dry shampoo has converted me from my favorite Drybar one! Now, I will warn you - the scent is strong, and when I spray it the night before, I can still smell it the next morning. But it works really well - it gives my hair some volume, and it really helps avoid the greasy hair look.

Drunk Elephant
I am still routinely using the Framboos exfoliant and the hylauronic acid serum every day, just like I have for the entire year. My skin has been looking great, and neither of them irritate my skin at all. They're definitely pricey, but for me, at least, they're worth it.

Dyson Blowdryer
Okay, this is definitely a splurge. I picked this up during a Black Friday deal, because the Dyson basically never goes on sale. I love how lightweight it is, and how quickly it dries my hair. If you're in the market for an investment dryer, I think this is a great choice.

Vitamin C capsules
This is a recent addition to the list - I liked the vitamin c serum that I was using before, but it was sticky, and I didn't love the feeling that it left on my skin. The hardest part about finding a good vitamin c product is that for it to be effective, it has to be kept from the light. That's what I love about these - they're individual capsules, so I don't have to worry about it going bad.

Drybar Brush Crush
On days that I don't wash my hair, I use this in the morning to tame my bedhead. It works perfectly to get rid of the creases from having my hair pulled up overnight, and makes it nice and smooth. A friend with curly hair recently bought it on my recommendation, too, and says she loves it!

Foreo Face Cleaner
I use this every single time I wash my face, and I even take it with my when I travel. It helps get my face actually clean - I feel like it really works in my cleanser and gets rid of the oils without being too harsh on my face. I love that it's made of silicone, because it rinses clean really easily - it's not a typical brush material that can hold on to bacteria.

Tuesday, December 17, 2019

Gift Guide: Last Minute Amazon Gifts

The holidays can get so busy and stressful that the time just seems to disappear! Somehow you find yourself one week before Christmas with (too many) people left on your gift list. In that spirit, I'm sharing some of my favorite gift picks from Amazon, all of which can be at your door before Christmas arrives.
Felt Lettering Board
I've wanted one of these for a while! It's the cutest little decoration for anywhere in your house - use it in the kitchen, your bedroom, the office - I can think or so many different fun messages to leave!

Echo Dot
What would an Amazon list be without an Echo? This is the dot, which is great when you want something for a small space, or something unobtrusive. But you can still set timers, control lights, listen to music - I use my Echo so much each day.

Tea Infuser
Winter is the perfect time for warm beverages - sipping a tea when it's snowing outside is so comforting. This is not only gorgeous (and would look great sitting out on a counter), but can brew all kids of loose leaf teas! Add a few of your favorite tea blends to make it a more personal gift.

Card Games
Whenever my friends and family get together over the holidays, the games always come out. What Do You Meme? is absolutely hilarious, and every time I play we cannot stop laughing. I had never seen 'Tis The Season before, but if you want to give a more holiday-themed gift, this seems like the perfect one.

Sherpa Lined Blanket
I know that blankets are in all of my gift guides, but I just really love them. Sherpa-lined ones are the best - so cozy and warm.

Smart Plug
The perfect thing to pair with the Echo Dot, or for someone you already know has an Echo. This lets you turn things on and off just by telling Alexa - the lights, the TV, a space heater - whatever you want!

Pretty Candles
Nice-smelling candles add so much atmosphere to the house. These look like they'd add the perfect touch to any room - when I think of "hygge," this is exactly what comes to mind!

Bluetooth Speaker
I think speakers like this fall into the category of things you don't think to buy for yourself, but make great gifts. This one is indoor and outdoor, and it's Bose, so you know the quality is good.

Monday, December 16, 2019

ACHIEVA Awards of Excellence

Last week, I had the honor of being given the ACHIEVA Award of Excellence in Community Awareness. ACHIEVA has a long history in Pittsburgh - they've been around for over 50 years, and they've been continually involved in advocating and providing services for people with disabilities. They do so much, and they're so well-known by the disability community in Pittsburgh and beyond.
I cannot tell you how special it felt to be included in this group of awardees. It still feels kind of weird for me to be recognized for my advocacy work - I feel like I'm still new and learning so much! So being honored by ACHIEVA was very rewarding. And to be able to hear the stories of each of the other community members being honored was incredible. One after another, each person shared personal stories about their ties to disability and to advocacy. It was truly inspiring to be reminded of the people out there who care deeply and are so committed to change.
It also reminded me how grateful I am for those of you here, who read and share my posts! My advocacy and disability posts are always some of my most read posts, and that means a lot to me. I know that my advocacy work would be nothing without the community that I've surrounded myself with. Whether in person, online, or both, I'm so grateful for you and your support!

Friday, December 13, 2019

Friday Favorites

Maybe it's because I know that the holidays, and a break from work, are quickly approaching, but this week really seemed to drag on. I say this a lot, but I am really looking forward to a low-key weekend (clearly, Lily gets it).
This week's favorites are below...

ONE - In The Heights trailer
This only came out yesterday but I have already watched it SO MANY TIMES. This is my number one movie that I'm looking forward to seeing this year - it just looks so incredible and magical. I get chills each time I watch it!

TWO - Instagram Interview
This is a really great interview with one of the Instagram co-founders. It's a really deep dive on how Instagram has changed over the years. It's always interesting to learn more about an app we use so many times a day!

THREE - Green Dress for Christmas
I bought this dress from ASOS earlier in the week when I was looking for a dress to wear for Christmas Eve mass. I love that it's festive, but not too over the top. I think it'll be perfect!

FOUR - Jennifer Garner and Julie Andrews
This video is so cute and so relatable! I'm pretty sure I would be exactly this tongue-tied if I were to find myself unexpectedly talking to Julie Andrews, too!

Five - Disney+
No link for this one, but I signed up for Disney+ a few weeks ago and honestly am loving it. I am definitely sucked in to their new, original shows like Encore! and High School Musical: The Musical: The Series, but I also loved re-watching the original Lizze McGuire series! In my opinion, definitely worth it.

Thursday, December 12, 2019

Gift Guide: Shopping Small and Local

As much as I love the sheer number of options I have to choose from when I'm shopping online from somewhere like Nordstrom or ASOS, there's something to be said about shopping small and supporting a local business. Since I missed Small Business Saturday this year, I thought I'd share a gift guide highlighting three local businesses that I love!
Knotzland is a local company that makes sustainable, handmade bow ties. They use almost entirely reclaimed/discarded materials to create their bow ties, and they're incredibly stylish, too! I serve on the Warhol Board with Nisha Blackwell, the Founder/CEO of Knotzland, and she is just so cool and creative. If no one on your list is a bow tie-wearer, keep them in mind for future events - they do custom orders, too!

Arbor House Soaps
Arbor House Soaps are handmade, delicious smelling hand soaps. They come in so many different scents; there's really something for everyone. They make such a great host/hostess gift, or you can add in some lotion or bath bombs and make a really cute little bath-centered set. My aunt is actually the owner, so I can personally attest to how wonderful they smell!

Katie Koenig Art
I guess this post should really be called "I Know Some Awesome People," because Katie is one of my very best friends. It's been so crazy to watch her grow as an artist over the years - her work is really sunning! She's doing some "mini masterpieces," which I think make perfect holiday gifts. I'd love to have these little macarons and this cappuccino hanging in my house!

Wednesday, December 11, 2019

Chic in Black and White

Theoretically, I love a simple black-and-white outfit. Sometimes in practice, though, I worry that it looks a little more middle school choir concert than it does Breakfast at Tiffanys-esque! But when it works, it works - it looks so sleek and chic and effortlessly pulled together.
Hopefully, this is one of those black-and-white outfits that works! I wanted something that was simple and easy to throw together, but didn't look like I hadn't put any effort in! I have been wearing (and mentioning) this dress from Amazon (find it here) so much this year. It's the perfect base for any outfit to build off of!

The other real reason for this outfit was that I wanted to wear these new shoes! I loved the pointy toe and the little bow in the front - it gave them a little extra detail without making them look too young. Sadly, the shoes are now sold out, but these shoes here would also be the perfect addition to any black-and-white outfit.

And finally, the scarf was something that I picked up at a Holiday Market outside the National Portrait Gallery in DC! I loved the subtle pattern, and how comfy it is. Obviously, you can't get this scarf online, but this scarf here or this one here are really similar, and don't spoil the simplicity of the look.

Tuesday, December 10, 2019

Accessibility: One Step Forward, Two Steps Back

Dealing with accessibility issues, and trying to improve them, always feels like such a mixed bag. It's never a straight path forward - for every big step forward I feel like I take, there's always a setback, or a curve in the path that goes somewhere I just didn't expect.

Within the past few weeks, I saw a really exciting accessibility change happen, and I had something really disappointing happen, so I thought that I'd share them both in one post. I want to end on a good note, so I'm going to start with the disappointing one.
When I was in DC, my sister and I booked blowout appointments at Drybar - at a location in Penn Quarter that we'd been to before, a few years ago. Since I had actually been there, I figured that I didn't need to worry about if they had the removable chair at the hair-washing station, because I'd used it! Drybar has also made it really hard to call a specific location to ask these kinds of questions - you have to call the corporate number, corporate will send a message to the location, wait for a reply, and then call me back with the reply. It can take hours, and you have to cross your fingers that the question you asked corporate got translated properly to the store.

But when we arrived and were taken back to the hair washing area, we found out that once again, there was no removable chair. Apparently, the chairs had been replaced a few months ago, and when they replaced them, they made them all permanent. The manager was great about making sure she put in a work order request to get it fixed, but that didn't help us there, in the moment.

We ended up finding a non-Drybar salon nearby with an accessible hair washing area where I got what might have been the best blowout of my life, so it really ended up working out for me. But I just couldn't believe that Drybar had actually removed the accessibility - it wasn't that they didn't include it from the start, it was that they had it and then took it away. Having a removable chair is something that doesn't hurt anyone; it only helps. Taking it away feels like a slap in the face - like Drybar is telling me that they don't care about whether or not I can get a blowout with them.

I'm contacting Drybar on my own, but before I share my happy story, I'd like to make a small request - if you're willing, please contact Drybar and let them know that this is an issue you care about, and that all of their locations should have removable chairs at the hair-washing station! Having many voices tell them this is more powerful than just one or two voices, and I'd really appreciate you sharing and spreading the word.

Now, to end on a positive note - this week, something happened that I have been wanting for YEARS - "my" Starbucks (Amos Hall on Pitt's campus) installed automatic doors!
The backstory - this Starbucks opened within the last 5 years or so. It's super convenient for me, because it's really near my office, and I visit multiple times a day. The staff have gotten to know me, and they've been great once I'm inside, but I could never get into the store myself. I'd have to sit outside and wait for someone to walk by, so that I could ask them to open the door. If it's 70 degrees out, that's not a huge deal. If it's 20 degrees and snowing, it becomes a lot more frustrating. One (or more!) of the baristas had actually tried to ask Starbucks corporate to add the automatic buttons, but it never happened.

Then one day I was at a meeting for Oakland accessibility, and happened to talk to a Pitt employee about my issue (since I was coming to the meeting cappuccino in hand). Since the building is owned by Pitt, and not Starbucks, he seemed to think it was something that he could fix for me. I didn't hear anything for a few months, so I wasn't sure if he had forgotten, or if he had run into a roadblock. But then I came back from my DC trip, went to get my coffee, and found out I could get into the store all by myself!

I was - and still am - so excited. It's such a small thing, I know, but I rely on people for help in so much of my day. Knowing that going to get a coffee is now something that I can truly do independently is super exciting, and takes away some of the uncertainty in my every day: Will there be someone walking by when I get there? Will they have their headphones in and not be able to hear me? How long will I have to wait outside?

So while I may have started this month feeling disappointed about accessibility, I'm definitely ending it on a high note. Change might be slow, but it can happen!

Monday, December 9, 2019

Gift Guide: $50 and Under

I'm really proud of myself this year - I have more of my Christmas shopping done than I have at this point in December on any other year. Now, I may have also bought myself a gift or two in the process, but that's not the point! I'm checking off more and more people on my list, and just have a few left to go.

Whether you have everyone left on your list to buy for, or just the final few, I pulled together a few things that I think will make great gifts this season. There's tried to pick a good variety, and as a bonus, everything is $50 or under!
L'Occitane Gift Set
This is such a great little set of L'Occitane products! Their lotion and shower gels are the best, and this has little sets of each with different scents. Buying makeup or skincare for other people can be hard, because people have such specific things they like and use, but this is something that anyone would love.

Cozy Blanket
I firmly believe that you can never have enough throw blankets. Snuggling up under a warm blanket, especially in the winter, just feels so perfect - for reading, or movie watching, or napping. It makes such a great gift, especially because people don't always think to buy it for themselves.

Plush Robe
Just like a blanket, a plush robe is great for lounging around the house, and it makes the perfect gift. This one looks so soft and warm, which is key!

Electric Smores Maker
This is so cool that I want one for myself! We have a little fire pit that we love making s'mores on when it's not winter - this is a little electric s'mores maker, so that you can enjoy their year-round and indoors. I definitely don't think it's something most people would have, and would be really cute as a housewarming gift!

Fuzzy Scarf
Just like makeup and skincare can be hard to buy for other people, so can clothes. Scarves are something that everyone likes, though, and you can never have too many! And this one is warm and fuzzy - if you couldn't tell from the rest of this list, that's something that is always a plus for me!

Travel Pouch
This is another item that I want to add to my own wish list! It's another travel pouch, which would be a great enough gift on its own, but I think this one is extra genius. It's a place to put all of the things that you want to be within easy reach, whether its on a plane or in a car. Your phone, your headphones, a charger, your ID, some cash... there's room for all of that!

Relaxation Grow Kit
The holidays are fun, but they can also be stressful! This little kit is all about relaxation - a lavender plant, an eye mask, and sleep spray. This is so unique, and would make such a fun gift.

Cute Mug
Anthropologie always makes the cutest mugs, and these are especially pretty. If you add in some hot chocolate or tea, this is a gift that you know people will get real use of.

Friday, December 6, 2019

Friday Favorites

This has felt like such a strange week to me! With Thanksgiving being so late this year, I came back from DC to my final presentation being due for the semester. It was not the easiest transition back after a trip! But the good news is that the presentation is done, and that means I'm finished with my last-ever class for my MPH! I still have one more semester left, during which I'll be writing and presenting my essay, and then graduating in April. This has been such a long time coming now, and finishing my last class seems like SUCH a milestone.

This picture is actually another from DC, not here in Pittsburgh, but it's so pretty that I had to share. Sometimes you just end up with perfect timing and catch a shot you could never have planned for.
Now, this week's favorites...

ONE - Hamilton Defined the Decade
It's been months since I've shared anything Hamilton-related, so I'm well overdue. Billboard named "My Shot" as one of their songs that defined the decade, and obviously I agree. If you haven't listened yet, you must! 

TWO - TikTok and Censorship
An article came out this week showing that the app TikTok suppressed videos created by disabled, fat, and queer users. It was done in an attempt to decrease bullying on social media, which is valiant, but by singling out and suppressing videos by these creators, it's actually increasing the stigma!

THREE - Penguins on Parade
And now for something a little more lighthearted! Every year during the winter (when it's cold enough), the Pittsburgh Zoo brings the penguins out of their enclosure for a little "parade." I went a few years ago - I was one of the oldest childless people there, ha! - and it remains one of my favorite-ever activities. Look how cute they are all lined up!

FOUR - Pantone's Color of the Year
Each year, Pantone picks a color to represent the coming year. This year's is "Classic Blue," and I am here for it. Blue is my favorite color, so I'm biased, but this really is such a classic and I love it.

Wednesday, December 4, 2019

Spotted in DC

The holidays getting closer means that I start getting bombarded from sale e-mails from stores. This is great when I have gifts to buy, but less great when I'm tempted to buy things for me and not other people! I just always seem to find something that I love and must have.
That's exactly what happened with this jacket. It's no secret that I love leopard print - I consider it a neutral. So when I came across this leopard print BB Dakota jacket, I knew that I had to add it to my wardrobe. I actually have a few other suede jackets by BB Dakota in different colors, and I love them for the fall and winter - they add more style to an outfit than a typical cardigan does. The leopard print version just takes that up another level!
I brought this with me to DC, and it was perfect for walking around the city (though I definitely wish I had worn tights!). It was warm enough for outside, but not so hot that I had to take it off when I went inside for dinner. And I just felt like it really made a simple black t-shirt dress so much more stylish! It would also be great with a pair of jeans and a white t-shirt, too.

It's on sale right now - well under $100! It's perfect as a gift, or as a gift for yourself - it'd look great at a holiday party. I know that it'll make an appearance in my outfits lots of times in the next month!

Tuesday, December 3, 2019

Giving Tuesday

I know that I don't usually post on Tuesday, but it's a special day today - Giving Tuesday. Today is the day that you're encouraged to donate to and support your favorite organizations, local and national. I wanted to share with you some of the organizations that I support.

Pittsburgh Symphony Orchestra
I've been part of the New Leadership Council of the Pittsburgh Symphony Orchestra for close to 5 years now, and I'm so happy to be part of a group encouraging people to experience the arts. I may come off as analytical (which I am!), but I love music of all kinds - there's nothing better than going to hear a live show. Supporting the arts is so important, especially as funding keeps getting smaller and smaller. The PSO is an award-winning orchestra - even if you don't donate, if you're in Pittsburgh, you should absolutely see a performance.

Community Living and Support Services 
This is my third year serving on the Board of Directors of CLASS. I was so honored when I was asked to join - they have a long legacy in Pittsburgh. CLASS actually worked with Mr. Rogers to help him address disability on his show! They provide direct services for people with disability, and are also involved in advocacy work. They're a great local organization that I'm more than happy to support.

The Warhol Museum
I just joined the Board at The Warhol this year, but I've been impressed by them for years. Not only are they the go-to museum to see Warhol's work, but their other exhibits are always incredibly innovative. Their educational programming and community-centered events are also inclusive and diverse, as is their physical space. I'm so proud to be a part of the museum, and think it's more than worthy of support.

Cure SMA
Cure SMA does amazing work for SMA-related advocacy, support, and research. They've actually supplied the seed grants for research that turned into Spinraza, currently the only-approved treatment for SMA. In exciting news, another drug was just submitted to the FDA for approval, which means more treatment options for people with SMA!! None of these are a cure, however, and continued funding for research and support is so, so needed.

Give Kids The World Village
I've written about Give Kids the World Village before - GKTW runs the "village" where Make-A-Wish kids and their families stay while they're on their Wish trip to Disney World. My sister and I stayed there years ago as Wish Kids ourselves, and it's truly a magical place. Everything is super accessible, and the princesses come for breakfast a few times a week! Staying there really makes the trip so special, and the volunteers that make it happen are so incredible. I just can't say enough good things!

Accessible YOUniverse
Of course, this list wouldn't be complete if I didn't mention my own organization, Accessible YOUniverse. Everything that we've been able to do so far has been really exciting, but we really rely on the support of the community to make things happen! If you're able to donate, or spread the word, I'd really appreciate it.

This is just a small list - there are so many other worthy organizations! Who are you donating to today?? Let me know in the comments.

Monday, December 2, 2019

A Week in Washington, DC

I mentioned this in one of my early November posts, but every trip that I took this summer was for something - a conference, a wedding, the pageant - there was no trip just to get away and relax. So when I looked at Pitt's academic calendar and realized that we had the whole week of Thanksgiving off from classes this year, it seemed like the perfect time to get away.
We wanted to go somewhere driveable, rather than flying, and for us that puts a tighter restriction on the distance, since we can't drive for as many hours a day as the average person. You know how you feel tired after a day in the car, even if you're not actually the one driving? For me, it feels like that plus extra physical tiredness. So DC is the perfect destination for us - it's only about a 5 hour drive for us, and there's so much to do when we're there.
We stayed at One Washington Circle Hotel, which was super conveniently located. We ended up driving a lot, but it's very near a metro stop, and there were so many restaurants and cafes walkable from the hotel. We stayed in a one bedroom suite, and it was roomy - it even had a balcony! Plus, there was no pet fee, which was such a bonus. Clearly, Lily settled right in. She's gotten so much better about not freaking out at hotels.

We didn't want to pack our trip with too much stuff, since the point was to relax a bit, and because it can take us longer than usual to get ready in a hotel, without our usual stuff. So we did a mix of stops at museums, dinners out, and ordering in to the hotel.

Our first full day there, we went to dinner at Jaleo, which was amazing! Zaytinya is one of my absolute favorite restaurants, and both Zaytinya and Jaleo are owned by José Andrés. It was one of those times where I felt like I couldn't possibly eat anything else, but I didn't want to stop because everything was just so good!
The next day, our big stop was the Newseum. I had been wanting to go for a while, but when I heard that it was closing at the end of December, I knew that I HAD to go. I got to pose as a news anchor, see the front pages of that day's newspapers from across the country and the world, and see a really fun exhibit about Jon Stewart and other late night hosts. For dinner that night, we went to North Italia, which was less than a 5 minute walk from the hotel, where I got an incredible short ribs dish and my sister got their "famous" bolognese. So good!
On Wednesday, we went to the National Portrait Gallery during the day. I knew that a portrait of Lin-Manuel Miranda had recently been added, so of course I wanted to see it! There was also a really intimate shot of Anna Wintour in her apartment, and the truly iconic Michelle Obama painting. And those are just a few highlights - there was so much art that I could have spent days in the gallery exploring it all. Wednesday evening, we had our big Thanksgiving meal a night early, at the Mount Vernon Inn Restaurant. Because our reservation wasn't until 8 PM, and the rest of the grounds closed at 5 PM, we didn't actually get to explore the grounds. We did, however, enjoy the extensive buffet spread they had set up! I love seeing the whole extended family on Thanksgiving, but it was nice to do something a little more low-key this year.

We started Thanksgiving Day by watching the parade and eating leftover Pumpkin Pie that the Inn had kindly had sent home with us. Later on, we went to the National Museum of African American History and Culture. This was another museum where I would have needed a few days to see everything. I loved how the history floors were set up - you took an elevator down to the bottom floor - going "back" in time - and then walked around and up ramps to move between floors and time periods. It was inclusive design done well - I didn't have to find a separate wheelchair path to get around. I was really impressed! And of course, the museum itself was incredible. There was so much to take in. You used to need timed-entry tickets to get in, but now on weekdays from September - February, no tickets are needed.

On Friday, we packed up and headed back home. We had a great trip, and I'm already looking forward to going back! DC is one of those places where no matter how long I'm there, there are always more things I want to do.

Wednesday, November 27, 2019

Christmas Wish List

In getting in the holiday spirit, I thought that I'd share my Christmas wish list. Now, to be clear - I don't actually expect to get any of these things! But it's still fun to pull together a wish list, and maybe it can serve as a little inspiration when you're looking to buy gifts for your friends and family.
AirPods Pro
I am obsessed with my AirPods, so of course I want the new Pro ones, too. I love that they finally have the silicone tips, and they're noise cancelling, too. I don't necessarily NEED to replace my current AirPods, but I want to!

Everlane Scarf
This scarf is a mix of wool and cashmere, and it looks so soft and cozy - as you know, that's my absolutely favorite combination. I love that it's oversized, too, so I could wear it as a wrap. And I love to support Everlane's sustainability and transparency when I can.

Tech Pouch
I love little packing pouches. Anything that can help me be more organized when I pack, I'm into. This pouch looks perfect for keeping all my cords and other tech things together.

Clear Crossbody
So many concert venues now have rules in place about the kind of bags you can bring in with you. It's either a clear bag, or a little clutch that is too small to even fit my phone! This is a cute version of a clear bag that's the right size to bring in.

Cashmere Cardigan
I actually have this in black, but I want to add another color to my collection! This is perfect for throwing on in the winter to add another layer and stay warm. Because it's cashmere, it's also thin, so it doesn't add too much bulk.

Neon Coffee Sign
This is so cute! It's the perfect little desk decoration and homage to my complete caffeine addiction.

Gray Apple Watch Band
I have this watch band in black, and have been wearing it every single day. It has held up incredibly well! It's not that I want to get rid of it, but this gray version would give me another option for days when I want something other thank black.

Mackage Satchel
This is definitely the "in my dreams" addition to the list. I have wanted this bag for years - I love the size and the arrow clasp in the front. It's a bit out of my price range, though, and the price ranges of anyone shopping for me. But a girl can dream!

Monday, November 25, 2019

The Best Blanket Sweater

I have a small problem - when stores start sending e-mails about holiday sales (ostensibly for buying gifts for other people), I end up shopping for myself. I actually did a major unsubscribe purge earlier this year, but there are a select few stores where I do want to know when sales are happening.
As a result, I was browsing the Nordstrom site last week and came across this sweater, and I knew immediately that I had to have it. I'm always looking for things to wear that will keep me warm, but that aren't so bulky or tight that it's hard for me to move. It seems like such a little thing, but for me, even the switch from short sleeves to long sleeves means that it's harder for me to move. And since I can't take jackets/sweaters on and off, once I put something on, it's on for the day. So I need something warm, but not stifling when I'm inside.
This sweater fits all of my criteria, and as an added bonus, it's SO comfy and cute! I wore it with a simple t-shirt dress (this one, from Amazon, that I have in 5+ colors), but it could just as easily be worn with a pair of jeans and a t-shirt. And seriously, I cannot express how comfortable it is! It genuinely feels like wearing a blanket (but a cute one!). I know I'll be wearing this A LOT in the coming months!

Friday, November 22, 2019

Friday Favorites

With Thanksgiving so close, it feels like we're officially in the "holiday season" now. My calendar is really starting to fill up, and I've been hearing Christmas music on the radio, too. I'm not ready to listen yet, but I know the time is coming soon!
I had the opportunity this week to go to a conference hosted by two local foundations focused on the intersection of nonprofits and disability inclusion, where the keynote address was given by the Ford Foundation. It makes me so excited every time I'm in a room full of people who are all passionate about disability inclusion and the concept that all issues are disability issues. I'm exhausted from the week plus the conference, but also invigorated! I am definitely looking forward to taking a break over Thanksgiving and relaxing a bit before the craze of December begins.

Now, on to this week's favorites...

ONE - Profile in The Pitt News
I was so honored to be interviewed and profiled in The Pitt News! The piece ended up being longer than I thought it would be, which was really exciting - I love being able to share my story and what's happened to bring me to where I am today.

TWO - Claire Saffitz Interview
I love every single video that Claire does for Bon Appetit's YouTube channel, so of course I also loved this interview. It's a fun "behind-the-scenes" glimpse into her life outside of the Gourmet Makes videos.

THREE - Bow Slingback Flats
I stumbled across these on Nordstrom's website, and couldn't resist when I saw that they were on sale. They're even MORE on sale now, and they're so cute and comfortable! It can be hard to find flats that still look dressy, but these definitely fit the bill.

FOUR - As Me with Sinéad
Sinéad Burke is a disability advocate with a passion for accessible fashion, which is of particular interest to me. As a little person, not many clothes are made with her in mind, and she's been working to help spur change in the fashion industry. She started a podcast recently where she talks with a diverse group of guests about what it's like to be them. It's SO good and really makes you think about other people's experiences!

Five - Crosswalk the Musical, Frozen Edition
I mean, I couldn't NOT share this. I have loved all the Crosswalk the Musical episodes, but this one has so many all-stars in it that it's extra good.

Wednesday, November 20, 2019

Striped Sweater Dress

When the temperature starts to drop, sweater dresses become my go-to when I want to be cozy and still look put together. The best part of dresses, in general, is that they take very little effort to form an outfit, and yet it still looks cute and polished.
Sweater dresses are the ideal version of this for winter - they're cute, but they keep you warm and comfy when it's cold out. And this striped one from eShakti is my current favorite.
I love the different colors - totally not my thing, normally, but I just think it works perfectly! The pleats give it a little something extra, and it's SO soft. Just so soft and comfortable! Plus, since it's from eShakti, it was super customizable - I changed the neckline and the sleeves to make it more "me." I get so many compliments every time I'm wearing it.

If you're looking for a last-minute outfit for Thanksgiving, I think that a sweater dress is the perfect way to go. No matter how dressy or laid back your meal is, there's a sweater dress for the occasion, and you can fill yourself with turkey, mashed potatoes, and stuffing without having to worry about unbuttoning your jeans.

If you want to try eShakti, don't forget to enter the code HEATHERTOMKO in the "Gift Coupon Box" at checkout to get 33% off plus free customizations on your first order. If you're looking for something a little different, I picked out some other cute sweater dresses below!

Monday, November 18, 2019

Headspace in Pittsburgh: Happy Healthy America

Earlier this month, I saw on Facebook that Headspace would be coming to Pittsburgh and doing a two day, live event in Schenley Plaza for free, and I RSVP'ed as quickly as possible. I found out they were actually launching their Happy Healthy America campaign here, which is so cool for Pittsburgh and really exciting for me!
I've written about using Headspace before - it's a guided mindfulness meditation app. I will admit that I'm not always the best about using it daily, but I am really trying to be better about my practice. I love that the app has so many different lengths of meditation - I can stick to the 5 minute ones, for now, since I'm still getting used to it. They also have so many different categories - meditation for anxiety, for focus, to help with sleep... something for whatever you're looking for.
Headspace took over Schenley Plaza and put up a huge, inflatable structure - "The Dot" - where all of the events took place. When I say huge, I mean it - it was three different connected bubbles, basically, all with room to walk around and explore. One of them was set up for the live meditation sessions, with little poufs to sit on, and one of the others had a QR code that you could scan for a fun Headspace filter for Facebook/Instagram (which I obviously took advantage of!). They had a whole bunch of activities going on across the two days they were there, but I specifically signed up for the live meditation session on Friday.
I wasn't exactly sure if I was going to enjoy it, going into it - I wasn't sure if I'd be self conscious meditating in front of other people, or if I'd accidentally fall asleep! But it was THE BEST. I didn't feel self-conscious or fall asleep - I just felt incredibly relaxed! It was led by Eve, who is the female voice on the app (I've actually only listened to Andy before), and she was great. I think it probably lasted about 10-15 minutes or so, but I wasn't really checking my watch! Afterwards, I got to walk around a bit and explore the rest of "The Dot." The only issue, for me, was the it wasn't very warm inside of the huge bubble, and by the end of my time there all I wanted was to be WARM. But at least I was relaxed!

Friday, November 15, 2019

Friday Favorites

This week has felt so busy! I had an amazing time on Wednesday evening speaking about my Public Source article at the Ace Hotel... and then had a delicious dinner afterwards at The Whitfield, one of my favorite restaurants. And later today, I'll be going to a live mindfulness meditation with the founder of Headspace! I can't wait.
And of course - thank you all SO MUCH for your support in the mission to Lift the Limit on the MAWD earnings cap! If you didn't get a chance earlier this week, you can sign the petition here.

Onto the favorites...

ONE - Mr. Rogers' Neighborhood
I am SO EXCITED for the Mr. Rogers movie coming out later this month. This story is such an in-depth look at the writers' time with Mr. Rogers - I think everyone should read it. It's just so good!

TWO - Lover Remix
Have you heard the remixed version of Taylor Swift's Lover, where she sings with Shawn Mendez? It's such a pretty song as a duet!

THREE - Knotzland on Youtube
Nisha, the creator of Knotzland Bowties, serves on the board of The Warhol with me. She's currently being featured in a series called "YouTube Stories." How cool is that?!

FOUR - History of Disney Songs
It's no secret that I'm a huge Disney fan. So of course, I loved the medley of Disney songs that Jimmy Fallon and Kristen Bell sang! It's the perfect thing to brighten up your Friday.

Wednesday, November 13, 2019

Advent Calendars

Growing up, my sister and I had a different Advent calendar every year. We loved opening up the little squares every day in December - I think that some of them had small treats in them, but often they were just a quote or a picture. But we always looked forward to getting to open it each day and see what the little square held - and see how much closer to Christmas we were getting!
I haven't had an Advent calendar in years, but I came upon this one from Anthropologie and couldn't resist. I thought it was the perfect mix of grown-up Advent calendar and nostalgia for me and my sister. It'll be something fun to do in the days leading up to Christmas - who doesn't love getting little mini presents each day? I'm really excited to bring the tradition back in grown-up form.
I realize that you might not all want a beauty-focused Advent calendar, so I pulled together some other options below. I think I might buy this tree one too - it seems like such a great little decoration for an entry table! And of course, chocolate is always a good option for getting into the holiday spirit! There's even a DIY version, where you decide what treats go in each pocket for each day.

Did you have an Advent calendar as a kid (or as an adult)? Let me know which one is your favorite!

Monday, November 11, 2019

Lift the Limit

I've written before about having caregivers/aides who help me, and I've written about what it's like when they don't show up (in this post). But what I haven't talked about is how they're paid for.
image via liftthelimit.org
Paying for caregivers out-of-pocket would be incredibly (impossibly) expensive, and insurance doesn't pay for long-term care (which is what caregivers are considered) at all. So there are state waiver programs, part of Medicaid, that pay for this care. Depending on how much you make, you may have to pay a monthly premium, on a sliding scale, to continue to be eligible even after you make more than the standard Medicaid limits (which are also impossibly low).

This all sounds reasonable... but there's a catch. There's an income cap of around $62,000 - meaning that if you make over that, you're cut off. And if you're married, it's a combined $62,000, not just the income of the person with the disability alone.

This means that employed people with disabilities are forced to make impossible choices between remaining employed and remaining eligible for the services that keep them employed. It's a nonsensical system, because forcing people to choose unemployment means that those people cost the state more money than they would if the state continued to support them through their employment.

I am working with the United Way to get Pennsylvanian lawmakers to "lift the limit" on the salary cap. You can visit liftthelimit.org to watch two videos of people sharing their stories (you may recognize a familiar face...) and then sign the petition to show your representatives that you support lifting the limit, too.

Friday, November 8, 2019

Friday Favorites

This has been one of those weeks where it both feels like it has lasted forever and it has flown at the same time. I was convinced that it was Friday on Thursday, multiple times, which is never a good sign!
It was a fun week, though - I got to see Antoni from Queer Eye speak and do a cooking demo at CMU, which was a great mid-week bonus. And now, I tentatively have no real plans going on this weekend, and I'm so happy about that. I definitely have things to do, but I'm really looking forward to being able to take it a little bit easy.

On to this week's favorites -

ONE - "Real Pittsburgher" Quiz
I thought this was a fun little quiz from Pittsburgh Magazine about how many "real Pittsburgher" things you've done! I actually didn't score that highly even though I've lived here all my life - let me know how you score, if you live here!

TWO - Billie Lourde and her Mom
I'm not even a real Star Wars fan, but this essay written by Bille Lourde about her mom, Carrie Fisher/Princess Leia, is SO good. You have to read it.

THREE - Molly Burke Meets a Fan
I've shared some of Molly's videos before, but this one is a new favorite. Molly surprises a fan who is also going blind, and seeing them connect is so heartwarming. I hope that you don't come away "inspired" by their disabilities, but rather understanding the importance of representation and connection. It's why Molly started vlogging, just like why I started blogging - representation is so powerful.

FOUR - Activism and Fashion
I love this interview, where Amanda Nguyen talks about clothes and style being a source of power, and using them in her work as an activist. You can do really important work while still being interested in style!

Thursday, November 7, 2019

Sephora Holiday Bonus 2019

It's that time of the year again - Sephora's annual holiday sale. It's the perfect time to stock up on holiday gift sets (for yourself or others) or just get some refills of your regular products. I tend to do a little bit of both - I definitely take advantage of the change to get refills on things that I'm running low on, but also pick up one or two fun, different things that I wouldn't normally buy. It's the perfect excuse to branch out a little bit.

As for the details - for Rouge members, the sale runs from November 1 - 11, and you get 20% off. VIB members get 15% off from November 7 - 11, and Insider members get 10% off during that same time. You can go into the store, or use the code "HOLIDAYSAVE" at checkout.

So what am I buying?

First up - the refills.

Drunk Elephant Products
Specifically, I use the exfoliant, the hydrating serum, and the vitamin C serum. I've been using these for almost a year now, I think, and I'm still loving them. They work, and they don't have any ingredients that my face reacts poorly with. They're not cheap, but I think they're worth it.

Ouai Shampoo and Conditioner
I use the Clean line - it's clarifying without being overly stripping. It smells amazing, and I feel like I've been having more good hair days since I started using it. Sold!

Urban Decay Subversion Lash Primer
I wear this every day under my mascara - I think it just makes my mascara look better and last longer. Is it absolutely essential? Probably not - but I love how it looks and I'm going to keep using it.

Marc Jacobs Velvet Noir Mascara
I feel like I go through mascaras so quickly that I'll always pick up another during a sale. I've been using this mascara for a few years now, and I still love it. It's not clumpy and it lasts all day without smudging down my face. I don't use waterproof, so it's still easy to get off at the end of the day.

Now on to the fun things...

Pat McGrath Eyeshadow Quad
I'm trying to be a bit more experimental in my eyeshadows. This Pat McGrath eyeshadow palette seems perfect for that! I chose "Iconic Illumination" - it has some more standard colors, but also the pretty purple/plum one to have some fun with!

Bite Beauty Mini Lipstick Set
I discovered Bite lipsticks sometime last year, I think, and keep buying more of them. I love their texture and staying power, and they're not so matte that they dry out your lips. I don't wear lipsticks so often that I ever go through a full sized one, so this set of minis is perfect. It would also make a great gift!

Charlotte Tilbury Pillow Talk
I know, another lipstick set! But I have heard so much about how the Charlotte Tilbury Pillow Talk shade is the perfect natural color for almost everyone that I had to try it for myself. This would also make a great gift for someone!

Monday, November 4, 2019

November Happenings

It seems like October flew by, but November is when things start to get really busy, I think. The end of the year creeps up before you know it, and the holidays always come with a lot of activities and events, too.

I thought it might be fun to share some of the things that I have going on in the next month.
This month, the Broadway in Pittsburgh series starts again (that's my name for it, not the technical one!). I saw Mean Girls this past weekend, which I absolutely loved - it was the perfect mix of references to the movie while still being its own thing. I also have tickets for A Bronx Tale later this month - I don't actually know much about it, but I've heard good things, so I'm excited.

On Wednesday I'm going to hear Antoni from Queer Eye talk and do a cooking demo at CMU! I watched the newest season of Queer Eye over the weekend to hype myself up even more. After getting to see JVN (see this post) and Karamo (in this post), I guess I'm making it my mission to meet all of the Fab Five!

Then the week after, I'll be telling my Pittsburgh Story with PublicSource at The Ace Hotel. I loved writing about accessibility in Pittsburgh, and loved even more the outpouring of support that came from my article! I'm looking forward to talking about the story behind my story, and hearing about the other speakers' Pittsburgh stories, too. Don't forget to get your ticket here if you want to join us!

On the 15th and 16th, Headspace is coming to Pittsburgh! I can't go to everything, but I'm very excited to join Andy for a live guided meditation. I am not amazing in my meditation practice, but I'm trying to get back into the habit. I'm really interested to see what it'll be like to experience it live.

I'm also excited to attend the Disability, Inclusion, and Access: Moving Forward conference being held at the Heinz History Center on the 21st. With a keynote address being given by the head of the Ford Foundation, the whole focus is on how disability has been largely overlooked in the planning and programs of nonprofits.

Finally - I'm traveling to DC! I had a ton of weekend trips over the summer - but they were all for something specific - a conference, a wedding - and while they were all really fun, they weren't necessarily relaxing. I feel like I'm finally ready to travel again after all of our summer trips, and I'm really excited to relax and explore. We have plans to visit Mt. Vernon while we're in DC, which I've never been to, so it should be great.

And that basically takes us into December; into the very thick of the holiday season.

Friday, November 1, 2019

Friday Favorites

Happy November! While I'm not really a big fan of dressing up on Halloween, I absolutely am a fan of dressing Lily up for Halloween, and she tolerates it pretty well! This year she was Wonder Woman - she has this weird thing where she freezes up if I put anything on her head, so she's not wearing the little crown, but I still think she looks adorable.
On to this week's favorites...
ONE - L.L. Bean #Bootmobile
L.L. Bean had a pop-up shop on Pitt's campus this week, and of course I had to check it out and take this picture with the Bootmobile (and pick up this super soft pullover). The best part, though, was learning that they actually had a chairlift that would let me get up into the truck/trailer part of the shop! Not only did it exist, but multiple employees made sure to tell me about it. I couldn't believe it, and it made me feel so included (and made me feel better about my purchase, too!).

TWO - The future of Condé Nast
I've always loved reading magazines, and as I kid I often thought about what it'd be like to work for one. I've watched The September Issue, the documentary about the making of the September issue of Vogue, so many times. This is a great, long form article about what the future of magazines looks like.

THREE - Airpods Pro
Apple FINALLY came out with Airpods that have silicone tips and are noise cancelling! I actually don't care that much about the noise cancellation part of it, but I have wanted Airpods with silicone tips for so long.

FOUR - Normal People on Hulu
I really liked Normal People when I read it, but it's definitely not light material. I didn't realize that they're turning it into a show on Hulu - I'll be really interested to see how it translates to the screen (and I'll definitely be watching).

FIVE - Dagne Dover Sale 
I bought a duffel bag from Dagne Dover earlier this year and LOVE it. They're having a sale right now, with some bags and a lot of their pouches. I may pick up this one in the XL size. I feel like you can never have enough little pouches when you're traveling!