Friday, September 29, 2017

Currently Watching, 9/29/2017

Last weekend, I finally saw The Big Sick, which I've been wanting to see for months. I love rom-coms, and I love things based on true stories, so I knew this movie was right up my alley.

The premise of The Big Sick is that a Pakistani man starts dating a white woman, but hides her from his family, who is trying to set him up with an arranged marriage. But his girlfriend finds out what's going on, they have a fight, and break up... but he gets a call when she has to be admitted to the hospital and put in a medically-induced coma. Don't worry, none of this is a spoiler - you find all of this out in the trailer, below.



The movie was written by Kumail Nanjiani and his real-life wife, Emily Gordon, and based on their relationship, so it's not exactly a suspenseful movie - we know how it's going to end! But it was still surprisingly stressful, waiting for Kumail and Emily to end up together, and I really enjoyed it. I think it captures how stressful and nerve-wracking it can be in the ICU, waiting for answers. I've never been in a coma, thankfully, but I've certainly spent my fair share of hours as both a hospital patient and a visitor. I will say, though... the ICU rooms that I've been in have been a lot more crowded with machines and equipment, much busier, and definitely a lot noisier!

I loved the movie, and absolutely recommend that everyone watch it - I think it's one of the most genuine romantic comedies that I've seen in years.

Thursday, September 28, 2017

Being a Make-A-Wish Kid at Give Kids the World Village

As a kid in a wheelchair, going to an amusement park wasn't necessarily my favorite thing. To ride most of the rides, I would have to get picked up out of my wheelchair and carried onto the ride - and even then, most of the rides I could ride were the "kiddie" rides.

But going to Disney was different. Disney has gone out of their way to make rides as accessible to riders in wheelchairs, and they make sure there are many, many other things to do during your time at the park that don't require getting out of your wheelchair, either. In each park at Disney World, there are at least a handful of rides that you can drive your wheelchair directly on to - more than at any other park I've been to. They have designated handicapped seating areas at each and every one of their shows and parades, and their resorts have a great variety of accessible rooms in various sizes and price points.

Going to Disney is always an amazing experience - but going to Disney as a Make-A-Wish kid is such an unbelievably incredible thing. My sister and I were both lucky enough to go to Disney as Make-A-Wish kids, and the memories from those trips - even though they were more than 20 years ago now - are still some of my favorite memories.

As Wish Kids at Disney, we got private meet and greets with every character, we got the best seats for the shows and parades, and we didn't have to wait in any lines. We really, truly felt like Princesses! Everyone treated us so, so kindly and generously, and it made us feel so special.



When you're a Wish Kid at Disney, you get to stay in your own private "community" called Give Kids the World Village. Every single thing about the Village was accessible - your villa was accessible, you could ride your wheelchair on the carousel, and the swimming pool was adapted, too. It sounds like a small thing, but for Wish Kids and their families, it's huge to know that you don't have to worry at all about the accessibility.


At Give Kids the World Village, you can also have breakfast with the characters, and they come around to each and every table to chat for a few minutes. We met Snow White during one of those breakfasts, and had her sign a little Snow White figurine we had bought as a souvenir. Later that day at the Magic Kingdom, we were watching one of the parades, and the float with all the princesses - including Snow White - went by. Snow White saw me and my sister from her spot on the float, pointed directly at us and waved, and then walked from the front of the float to the back and pointed and waved again to make sure that we saw her. This story is still my favorite Disney story to tell, and really sums up the magic of the park.



From now until mid-October, if you donate through Omaze to Give Kids the World Village, you're entered for a chance to win a stay in Cinderella's Castle in the Magic Kingdom, which is my dream! Check out this video to see how amazing the suite in Cinderella's Castle is:



You can't ever reserve this room, so this is incredibly special, and I can speak from personal experience and say that you're donating to a really great cause. Please consider donating here!

https://www.omaze.com/experiences/Disney-Cinderellas-Castle?referral_code=ad09973d0694430aaf60bbf58c470514


Wednesday, September 27, 2017

Skincare Update

I've talked about my skincare routine before - morning post here, and evening post here - but I've been using two new products that I wanted to talk about: Paula's Choice RESIST Advanced Pore-Refining Treatment 4% BHA and Paula's Choice RESIST Anti-Aging Eye Gel.

The best candle ever, in the scent "Rose:" here

I've been wanting to add an eye gel to my routine for a while now. It's the first part of the face where you really notice tiny wrinkles - smile lines! And in the winter especially, the skin around my eyes can tend to get a bit dry, especially since I use gentle exfoliation twice a day. This has been a great, lightweight gel - it absorbs really quickly, and is light enough for my skin. I love the cooling metal applicator tip, too!

The other product is kind of a combination one - it's a leave-on exfoliant, but has antioxidants like a serum would, as well. I'm using this in place of my other nighttime serum, for now - I've been having some breakouts, and felt like I needed a little extra power in dealing with them! I absolutely love the texture of this serum - it spreads really nicely, and it dries down well, too. The dispenser is great - you press down on the button on the lid, and it draws the serum into the little dropper attached to the lid. I love how easy it is to press the button to dispense the liquid - it takes no strength at all!

Both of these products have been the perfect new additions to my routine, but I'd love to hear if there are any other new products you can recommend to me!

(This post uses affiliate links - I may make a small commission for any clicks or purchases you make.)

Tuesday, September 26, 2017

What's In My Bag: My Essentials

I think it's always fun to read "What's In My Bag" posts - it's interesting to see what other people carry around with them every day, and sometimes I end up buying something to add to mine from someone else's post!


I'm very, very particular about my bag. I hang it on my wheelchair, so I have easy access to it, so it has to have just the right kind of handle so that it isn't too long or too short, and so that it doesn't get in the way of my joystick and make driving more difficult. Coach technically calls this purse a wristlet/clutch, but it's the perfect size for my needs!

I love pouches and card holders. I have one for my ID and credit card (1, above) , so that I can easily throw it from bag to bag when I want to use something else for a night. I have a zippered pouch for my cash and important cards like insurance (similar here) (2), and other things I use more regularly. And then I have one more card case (here) (3), that has store rewards cards and gift cards that I don't use as often. I like that it keeps it more organized, but it's smaller and lighter than a wallet, so it's easier for me to pull out of my bag on my own.

There is always a variety of lipsticks in my purse; I just keep throwing more of them in and then eventually clean them out when it gets to be too many. The ones always in there, though, are my MAC Tendertalk (5) and my Clinique Black Honey (4). I'm not really a big lipstick person, and these are the perfect balance, with a balm-like texture but some color, too.

I'm never, ever found without my Mophie battery (7), Bath and Body Works hand sanitizer (8), blotting papers (6), and a Tide pen (9). Instagram uses a lot of phone battery, plus e-mails and texting... my phone never makes it through a full day, and the Mophie gives me the extra phone juice that I need. Coffee spills require immediate attention, and my face is super oily and needs blotted after just a few hours. I'm not picky, though - any brand will do (and a toilet seat cover will do in a pinch)!

And of course, I have my Ray-Ban sunglasses (10) and my AirPods (11). I've had this pair for more than five years now, and they're my go-to sunglasses. I wear them all the time! I've talked about the AirPods before here.

Finally, I have my door remote (12) and novelty pencil (13). I know these look crazy, but the pencil is what I use to reach elevator buttons in my office that are out of my arm range! I found it in my basement, and it turned out to be the perfect length. It's not the most high-tech solution, but it gets the job done. And the door opener is for my office - it works like a garage door opener - when I press the button, my office door automatically opens.

(This post uses affiliate links, and I may make a small commission from any clicks/purchases you make.)

Monday, September 25, 2017

Summer Weekend in Late September

Even though this was technically the first weekend of fall, Pittsburgh surprised us and gave us some bonus summertime weather! I wanted to make sure I took advantage of this while I could, because I'm never ready for summer to end.

Bakery Square is a fun, new area in Pittsburgh that's really been revitalized over the last few years. Google, CMU, and Pitt all have offices there, they have restaurants, a coffee shop, some great stores like Anthropologie, Free People, and West Elm, and some amazing new condos and townhouses nearby.




On Friday, Bakery Square threw a Summer Send-Off - they had live music, drinks, and an amazing selection of at least 40 food trucks. I had the most difficult time deciding between food options, but went with pizza from the delicious Proper Brick Oven and Tap Room... and of course, had to finish the night off with some ice cream from Brusters!

I had fun outdoor plans for Saturday, too - it was my friend Katie Koenig's last art show for the summer season, so I went to the Mount Lebanon Artist's Market to see her art, and the other booths. I've mentioned her in other posts this summer, but I can't help but show her work again, because I think she's a fantastic artist! She's been winning award after award this summer, and I'm so proud of her. You can check out her art here.

It was a great September summer weekend, and I'm hoping we get more of the beautiful weather before the start of fall.

Friday, September 22, 2017

Currently Reading, 9/22/2017: What Graham-Cassidy Means For Me

I don't want this blog to get too political, because health policy isn't the only thing I care about, but I also want to make people aware how much it's been on my mind lately. I think that when people think about health policy, the tendency is to think so much about the big picture that the actual, real people who will be most affected by policy change are totally forgotten.

I talked in an earlier post about why healthcare is so important to me. You can read that here, and that's what I want to share as my "Currently Reading" for this week. It's more than shameless self-promotion; I really want people to understand how much my life revolves around, and relies on, healthcare. I also want to talk more specifically about the proposed Graham-Cassidy bill, and what it would mean for me (and for others with pre-existing conditions) if the bill were to pass.

I have a pre-existing condition, and this isn't something that's ever going to go away. If states are allowed to waive protections for people like me, the cost of my premium could go up astronomically. What do I do, then, if I can't afford to pay my premium? How do I get the medical care that is necessary for me to just live? That isn't, and cannot ever be, a real choice. I shouldn't have to worry about being able to pay for something that's keeping me alive. Waiting until the situation is dire and visiting the Emergency Room could very literally mean life or death for me, and is actually more expensive for taxpayers than allowing me to have access to reasonably priced, preventative healthcare.

The other alarming provision of Graham-Cassidy is the conversion of Medicaid to a block grant, with the ability to cap the amount spent. I rely on a waiver that provides Home and Community Based Services - essentially, this waiver helps me to live at home, rather than in an institution or nursing home. If Medicaid is capped, what do I do when I've reached my limit? I cannot get out of bed, use the bathroom, or take a shower without the assistance provided by the waiver. When this assistance goes away, how do I live any semblance of a normal life?

I very strongly believe that everyone deserves the chance to live, and that having access to healthcare is a vital part of that. Please join me in asking your Senators to vote no on Graham-Cassidy - ask them to remember the constituents that they represent.

Thursday, September 21, 2017

Why I Want to be a Health Activist



On Tuesday night, I attended my first session of the Jewish Healthcare Foundation's Jonas Salk Health Activist Fellowship - you can read more about it here. The program runs through November, and during that time, the fellows will each (or in small teams) put together activism/advocacy campaigns for a cause of their choice. I will be working on disability access in Pittsburgh, and will hopefully be able to begin a campaign to both improve access, and also spread the word about H.R. 620 (read my thoughts about it here) so that access doesn't get any worse.

I haven't always been this involved in disability activism and advocacy. I've spent much of my life trying to focus on my similarities to other people, which I don't regret at all. I have a lot of interests, and haven't wanted to pigeon-hole myself into only being active in disability related causes - I absolutely think of myself as being more than just my disability! But I've come to realize recently, partly because of the fraught political climate, and partly because of my master's program in Health Policy and Management,  the importance of having a say in things that have the potential to affect my life.

When Emma Watson gave a speech at the United Nations, she quoted a Jewish rabbi, saying "If not me, who? If not now, when?" and this really encapsulates my recent involvement. I'm realizing that if I don't speak up and get involved, there is no guarantee that anyone else will do it for me. And really, who better to advocate for my needs than me?

Wednesday, September 20, 2017

A Tourist in My Own City

Since I've started writing this blog, I've started exploring Pittsburgh a lot more than I ever have before. Even though I've lived here my whole life, I tend to go to the same places over and over. I definitely like checking out new restaurants, but it's so easy to slip back into the easy routine and just stick with what I'm familiar with.

After a dinner downtown over the weekend, though, a friend suggested we take a walk to the River Walk down by the Convention Center. I had no idea what she was talking about, but it was the perfect night for an after-dinner walk, so I went along with it. I'm so glad that I did! 

Living in Pittsburgh my whole life, it can be easy to forget how pretty the city can be. But the views from the River Walk were stunning, and such a cool, unexpected feature underneath the Convention Center!
Dress: here

Dress: here

Dress: here

I'm really glad I ventured out in my city and basically played tourist, and I'll absolutely have to do it again, with something else new.

Tuesday, September 19, 2017

Getting Back into the Groove

This semester has been off to a rough start for me. I went to New York over Labor Day weekend (which you can read about here), which was a super fun trip, but left me feeling like I was already one step behind where I should be this semester. I'm writing this blog, taking two classes, having board and committee meetings for organizations that I'm part of, and recently and was accepted to the Jewish Healthcare Foundation's Health Activist Fellowship (more on this in another post). These are all things that I'm really excited about, but they also all take time!

I knew I needed to get things back on track, so I've spent time this week trying to get my life in order. I had been trying to use my phone's calendar as my only calendar, but I realized that I'm still someone who needs to see things written out, especially for assignment due dates and exams. So I bought a new planner, and spent some time filling that in with everything I have coming up. Even just seeing everything laid out and written down helped me to feel more in control! I also took Sunday to work on school work, get ahead on blog post writing, and other personal errands and things on my to do list.

When I was little, I loved Shel Silverstein's poetry books. One of my favorite poems was Melinda Mae, about a small girl who ate a whole whale, bite by bite, even though people said she'd never finish. The poem is definitely about determination, and proving people wrong, but I like to think about how she accomplished her goal, one little bite at a time.

It's really easy to get stressed about everything going on in life, and then feel overwhelmed, and like you don't know where to start! I have a stress breakout on my forehead right now for this exact reason. But I always find that when I take a step back, take a deep breath, and start slowly - in this case, just by writing things down in my planner - things start to feel so much more manageable.

What are your tips for dealing with stress in life? Let me know in the comments below!

Monday, September 18, 2017

Polka Dotted Perfection in Downtown Pittsburgh

I've been trying to not go crazy with online shopping lately, because there were a few weeks over the summer where new boxes of my purchases were delivered on an almost daily basis. But I was browsing J. Crew's website while getting my blowout in New York over Labor Day, and since there was a sale, I decided to go with my vacation mentality and clicked "buy" before I could talk myself out of it.
Dress: here

I'm so glad that I did! I always love polka dots - I feel like floral patterns often make me look like I'm 12 years old, but polka dots never let me down. My favorite part of the dress is that the straps are ribbons that tie, so they're adjustable to whatever length you need. Straps are almost always too long for me, so this is perfect!
Dress: here

Dress: here

This weekend, Pittsburgh made up for the chilly fall temperatures and gloomy skies by giving us the perfect weather, and I made sure to take advantage of it. This dress was the perfect choice for a warm September night. The navy blue color makes it perfect for the fall, but it's still light and airy enough not to feel too heavy in the warmer weather.
Dress: here

I think the dress will transition perfectly into fall, with a black cardigan and black booties or flats. It's definitely a dress I'll get a lot of wear out of, and the impulse purchase was a great one!

Shop the outfit here (the clutch is similar, because mine is very old):


(This post uses affiliate links, which means I may earn a small commission from any clicks or purchases you make.)

Friday, September 15, 2017

Currently Watching, 9/15/2017

More and more, my favorite TV shows aren't shows that I watch on actual "live" TV, but on different streaming services. One of these is The Mindy Project - this show was actually the reason I bought a Hulu subscription! The show started on Fox, but eventually moved to Hulu, and I knew I couldn't stop watching.

The Mindy Project is a rom-com in TV form, and it pulls from a lot of "stereotypical" rom-com moments. But it always does it in a fun, loving way, not a mocking one. Mindy Kaling is the creator and star of the show, and she is hilarious as Mindy Lahiri, NYC ob/gyn. So many of her throwaway one-liners make me actually laugh out loud. Ike Barinholtz, who plays the rather clueless nurse Morgan, is so silly, and every scene that he and Mindy are in together is comedy gold. Also, every single one of Mindy's outfits is amazing - they're not all necessarily things  I would personally wear (lots of bright patterns) - but they're so fun!

This season will be the last of The Mindy Project, and if you haven't been watching, you should absolutely start. Check out the trailer for the last season below, and then start watching from the beginning on Hulu ASAP!


Thursday, September 14, 2017

Fall Fashion

Seeing the title of this post makes me a little sad, because I'm never ready for summer to end! But I realized during my trip to NYC (when I packed summer clothes totally inappropriate for the actual weather) that fall is closer than I'd like to think. And while I'm not a fan of summer ending, I am a fan of an excuse to go shopping. So I've pulled together some of the styles I'm looking forward to for fall!

  
 
1: This plaid cape
2: This cozy sweater with a split back
3: This pretty blue sweater with a ruffle detail
4: This heavier, patterned cape
5: These black wedge booties
6: These more casual tan booties

One of the reasons I hate fall (and winter!) is having to deal with layers and jackets. I can't put a jacket on/off by myself, so the colder weather forces me to be trapped inside a lot more - it definitely cuts down on my mid-day Starbucks runs! But I've been loving that capes are back in style, and I really love the two above. They absolutely look like part of an outfit, but they're so much easier for me to wear than a jacket with sleeves!

Once the temperatures drop, I basically live in sweaters. My style definitely veers towards classic, and not too trendy, but the two sweaters above each have a fun little detail that keeps the sweater from looking too traditional.

And finally, the shoes! I'm not ready yet to think about real booties, but I can get behind booties. I have really small feet - I wear an adults size 4, or a kids size 2-3 - and I'm always on the hunt for booties that fit well. I love that the black wedge pair is a little more polished, while the tan pair could be worn on more casual days.

What are you most looking forward to about fall?

(This post uses affiliate links, which means I may earn a commission from any clicks/purchases you make.)


Wednesday, September 13, 2017

My All Time Favorite Songs



I'm still getting back into the swing of the new semester and my schedule, so I wanted to keep today's post light and fun! Going to see Bastille at Stage AE over the weekend made me think about how important music is to my life, and how excited I get when I hear one of my favorite songs.

My favorite songs are all over the place, genre-wise, but they're all songs that I could listen to on repeat for hours on end. As I was writing them down for this post, I realized that I heard a lot of them for the first time on a movie or TV soundtrack - which is actually not surprising, because I'm not necessarily incredibly adventurous with new music. This list isn't in any particular order, because that's too hard for me to choose!

1. Do You Believe in Magic? by The Lovin' Spoonful

This song was the theme song for State of Grace, a TV show on Fox Family (which became ABC Family, which became Freeform). I was hooked from the first time I heard it - I don't know how you can listen to this song and not feel happy.



2. Accidentally in Love by the Counting Crows

This song is from the Shrek 2 soundtrack - the music video actually features characters from the movie!



3. Love Shack by the B52s

I'm sure that I heard this song for the first time at a wedding, or a middle school dance - it's such a standard. But I know every word, and I can't help but sing along.



4. Drops of Jupiter by Train

I was just at the right age when this song was at the height of its popularity, and it stuck with me! I've been to a few Train concerts since then, and love to hear this song live.



5. Vienna by Billy Joel

I've seen Billy Joel twice now in concert, and I'm still waiting to hear this song live. This is another soundtrack find - I heard it during 13 Going on 30  - and I think the lyrics and the music are incredible.



6. Boys of Summer by Don Henley

This song has one of my favorite "special effects" that are made by an instrument and not a fake sound effect - guitar playing that sounds exactly like seagulls.



7.  Someday We'll Know by the New Radicals

In A Walk to Remember, Mandy Moore and Jonathan Foreman from Switchfoot duet to this song. The New Radicals weren't around for long, but I think the songs that they did record are incredible.



That's my list! Let me know what your all-time favorite songs are in the comments below - I am always looking for new music recommendations, since I clearly don't explore much on my own!

Tuesday, September 12, 2017

Accessibility in New York City

Cashmere wrap: similar here


I talked about my NYC trip more generally here, but I wanted to do a separate post specifically about the accessibility of the city. I've been there enough times now that I feel like I have a good idea about how accessible (or inaccessible) the city is - at least from a tourist's point-of-view.

I'll start with a positive - so much of New York City is walkable, a most of the sidewalks do have curb cuts. If you plan out your trip carefully, you can easily spend a weekend in the city, going to shows, Central Park, the Empire State Building, restaurants, and bars, all without ever having to get on the subway or take a taxi.

The downside of this, though, is that it limits your explorations to a few square miles, and the reason that I suggest walking is that the subway is very inaccessible. It's not completely inaccessible - there are some stations that have elevators - but those stations are few and far between, and the elevators are often broken. This means that you might spend an hour or two researching accessible stops, and carefully planning out a trip, only to get to the station and find out the elevator isn't working at the moment. Also, the accessible entrances are often in a totally different block than the regular subway entrances, and you have to navigate an underground maze to find the platform that you're looking for.

I should mention that NYC does now have wheelchair taxis, but I haven't gotten to try out this option yet. These taxis can only accommodate one wheelchair at a time, and since my whole family travels together, we'd have to get two taxis so that my sister and I could each ride on - this would get expensive quickly! We have had good experiences taking the buses, though - I can't speak for every bus driver and every bus route, but the driver we had was very knowledgeable and helpful with the wheelchair tie-downs.

There are so many hotels in NYC, and a lot of them do have accessible rooms or suites. We generally tend to stick with hotel chains, rather than boutique hotels or AirBnBs - it's much easier this way to request specific accessibility features, and to know what you're getting. All hotel rooms in NYC are small, though, as are the bathrooms - having an accessible room is key to having the space needed to get a wheelchair in and out of a hotel bathroom!

This most recent trip was disappointing in terms of accessible restaurants. I had made a reservation at Tavern62 by David Burke through Open Table, and I had made sure to note in the online form that there were two wheelchairs in the party. However, when we got there, we found out that the restaurant wasn't actually accessible. The sommelier who we spoke to kept saying that they didn't know, and what a shame it was that we couldn't get in. What's most frustrating about situations like this is that it's not just a shame, it's actually illegal under the Americans with Disabilities Act. It also put a real damper on the rest of our night - we then had to walk around the city on a Saturday night, in the rain, looking for a restaurant that could accomodate a party of six people at 7:30 PM. Even more frustratingly, in our attempts to find a new place to eat, we found at least two more restaurants that were also inaccessible.

I still do love traveling to NYC, but I make sure to be realistic when I'm planning my trip. I stay within one borough (preferably, within one or two neighborhoods!) and plan everything carefully!

(This post uses affiliate links, which means that I may make a commission from any clicks or purchases you make.)

Monday, September 11, 2017

Birthday Weekend Recap

I love my birthday, and I try to extend the celebrations for as long as possible. That's why I started my birthday celebrations early, while I was in New York over Labor Day, and continued the celebrations this past weekend here in Pittsburgh.
Top: Sold out, similar available here

First up was dinner at Superior Motors, a new restaurant in Braddock. This restaurant has been in the works for about three years now - it's housed in an old Chevrolet dealership. The chef, Kevin Sousa, has opened three other restaurants in the Pittsburgh area, and actually used Kickstarter to help raise the funds for this one. The restaurant finally had its highly-anticipated opening earlier this summer, and I was so excited to get the chance to try it out for my birthday dinner!


Superior Motors absolutely lived up to - and exceeded - my expectations. The menu is inventive, with offerings like scallops with tomatillo and quinoa, lamb with yogurt and kohlrabi, and rigatoni with sweetbreads and shrimp. Everything that we ordered was delicious and perfectly prepared. The desserts were also incredibly tasty, and I've never been anywhere else that offered a chocolate dessert accompanied by mushroom, maple, and matcha. I'm so glad that Superior Motors is a new addition to Pittsburgh's restaurant scene, and I can't wait to go back!

Cashmere cardigan: here
I had one more event as part of my birthday weekend - the Bastille concert at Stage AE. I love going to outdoor concerts at Stage AE - there isn't really a bad seat in the house, and prices are incredibly reasonable, and the bands always put on a great show. Bastille was celebrating their one-year birthday of their most recent album release, so I was excited to celebrate both their album's birthday and my birthday. 

And with that, my birthday weekend came to a close! I had such a fun time celebrating with my family and friends.

(I use affiliate links, which means I may earn a percentage from any clicks or purchases you make.)

Friday, September 8, 2017

Currently Reading, 9/8/2017

Thanks so much for all the birthday wishes! I'm looking forward to continuing my birthday celebrations over the weekend.

In yesterday's post, I mentioned the op-ed that I wrote that was published in the Pittsburgh Post-Gazette (you can read it here). In that same vein, I wanted to talk today about a recent article I read talking about a bill going around the House of Representatives related to the Americans with Disabilities Act (ADA), H.R. 620, which you can read more about here.

The ADA is long, and complicated, and has as many exceptions to it as it does requirements. But in short, one part of the ADA is that businesses must follow it proactively - this means that they have to make their businesses accessible ahead of time, not after a complaint is made. If they chose not to, then they can be taken to court it order to force them to comply.

H.R. 620 wants to change this aspect of the ADA. Before a person with a disability could take the matter to court, they would need to notify the business, and give them a suitable period of time to make changes (or progress towards changes) before moving towards a lawsuit. This change is being introduced in an effort to cut down on what have been called "drive-by lawsuits," where a business who doesn't meet ADA standards is sued without ever being contacted by a person with a disability.

I know that you might think this sounds reasonable. But even with the ADA as it stands - where businesses are supposed to proactively comply with the law - you would not believe the number of businesses that remain inaccessible. They're "required" to comply, but no authority checks up on them along the way. This means that new businesses are built with no accessible entry - that have a full flight of stairs just to get in. By modifying the ADA, the burden is placed on me, or another person with a disability, to complain - making me FEEL like a burden, rather than a potential wanted customer. It makes me feel like a second-class citizen who doesn't deserve to be able to get into the restaurant, or to buy clothes at the local boutique. And it places the burden on me to call ahead and investigate every single new place I might want to go to, because if I find out in-person that somewhere isn't accessible, it's too late!


Please contact your representatives and ask them to vote against H.R. 620. I know that there are lot of political issues that you may feel strongly about right now, but if this bill passes, it would have a very real impact on my everyday life! You can use Resistbot (which I talk about in this post) to contact your representatives easily and quickly.

Thursday, September 7, 2017

Another Year Older

Today is my birthday - I'm officially 29 years old. I thought in today's post, I'd talk about some of the highlights of the past year, for me.

Joining organizations in my city
In the past year, I've joined the New Leadership Council, for the Pittsburgh Symphony Orchestra, the Board of Directors for CLASS, a local disability advocacy organization, and the American Public Health Association, a national professional organization in my field. I can be an introvert, and joining groups where I know no one definitely pushes me outside of my comfort zone. That being said, I really like being involved in things and giving back where I can, so I'm very excited to continued working with these organizations!

Seeing Hamilton twice on Broadway
I know that I just talked about this here, and that it also may come across as bragging - but honestly, I think it's just such a special show and there's something incredible about seeing it live. I've mentioned that the trip to NY isn't exactly easy for me, which makes the whole experience even more special. I'm looking forward to seeing the show when it makes its way to Pittsburgh, too!

Having my op-ed published in the Pittsburgh Post-Gazette
I was the Forum (Opinion) Editor for my college newspaper, and in another life would have loved to have been a journalist. It was really exciting to see my name in print in the byline, and also to get the feedback that I did from friends and strangers alike - you can read it here.

Officially hitting the halfway mark in my graduate school career
When you're a part-time graduate student, it can seem like a very long, never ending journey to graduation. When I was planning out my class schedules for the next few semesters, I realized that I was more than halfway done with my classes - it feels like a huge accomplishment!

Starting this blog
It's been over three months now, and I'm still sticking with it! I've really been enjoying writing this, and have loved hearing from people who are reading!

Taking part in the Patient-Focused Drug Development Meeting between the FDA and CureSMA
This was such an exciting experience to be a part of (read about it here)! I thought it was cool from a personal and academic perspective, which made it even more interesting to me. It felt really good to be a part of such a monumental event, and also really interesting to hear the opinions and experiences of others with SMA.

Having a quality group of friends who I know I can count on
This is not a concrete accomplishment, but something that I've really realized how much I value! I'm not someone who has a ton of acquaintances - when I'm friends with someone, it means that I consider us close, and that I expect a lot, but am willing to give a lot, as well! This has resulted in a small group of friends from different ages of my life that I'm incredibly grateful for - people that I know will be there for me, and that I can count on, no matter what.

I think this past year has been pretty great for me, and I'm really looking forward to the last year of my 20s!



Wednesday, September 6, 2017

A Whirlwind Weekend in NYC

Over the long Labor Day weekend, my family and I traveled to NYC! This wasn't my first time in the city - my best friend from college lives there, so I like to go to visit her and explore everything that the city has to offer. It's not exactly an easy drive for me - it's just about the longest that I'm able to be in the car without needing to get out and take a (long) break - which means that it's not a trip I can make too often!

When we travel to NYC, we generally try to stay somewhere in midtown, because it's easiest to walk to shows, restaurants, cafes, etc. from there, and there are accessible Subway stops if necessary. Last time, we stayed right in the heart of Times Square, which was too much for me - there were crowds of people no matter what time of day it was.


This trip, we stayed at The Lexington, one of the hotels in Marriott's "Autograph Collection." This was my favorite, by far, of any NYC hotel that we've stayed in. Rooms in the city are usually known for being tiny, but the one bedroom suite that we stayed in had enough room for my sister and I to move around in in our wheelchairs, even with the sofa bed pulled out. The location was great, too - it was only a 15 minute walk to the theater district, and about the same distance to walk to Central Park. It was exactly what we were looking for - and also really cute!


Since New York was the first place that I went to a Drybar, I made sure to make time for an appointment. I love knowing that I can get a blowout and have it last for the weekend - it makes packing much easier! After the blowout, we stopped at Maison Kayser for a quick bite, and then went to the Central Park Zoo. The weather wasn't ideal, but we still enjoyed walking around before the rain started!


There were some accessibility issues with our dinner plans that night, but I actually want to save that story for another post next week where I talk more about accessibility in New York. My wheelchair battery also ended up dying while we were walking around in the rain trying to find a place for dinner, which was not ideal, but it luckily died right across from a hotel restaurant that was able to accommodate us!

The highlight of the trip, however, was seeing Hamilton. I was actually lucky enough to see the show last November, as well, but only had two tickets then. When we were making the drive there last year, my dad and sister were both really bummed that they weren't able to see it as well... and it just so happened that the next block of tickets went on sale just a few days after we got home from that New York trip, and we were able to get enough tickets for my whole family, plus my cousin (who I also introduced to the show!).


I know that most people haven't had the chance to see the show once, much less twice - I am so incredibly lucky and grateful! It was so special to see the show with my family, and to discuss it afterwards - we all had the most amazing time. We were also able to get a quick picture with two of the stars of the show - even though they were not at the stage door because they had places to be, they were so kind and gracious and agreed to take a picture, and they really made the trip so incredibly special!


A weekend never seems long enough in New York - there are so many things to do and see! I can't wait for my next trip.

Friday, September 1, 2017

Currently Reading, 9/1/2017

I can't let this week go by without acknowledging the devastation in Houston brought on by Hurricane Harvey. That's why I want to highlight this article from Forbes, that lists numerous ways you can help out, and reputable organizations that are accepting donations.

There are so many groups accepting donations, and so many people in need of help. The lives of many Houston residents have been irreversibly changed because of Harvey, and they may be left with nothing. I really want to urge you to donate if you're able!

Also, please keep the people of Houston in your thoughts and prayers. Natural disasters like this make me worry, in particular, for those with disabilities. For many, losing power or having your house flood would be horrific, but for people with disabilities, these same events may actually severely compromise their health. Losing your possessions is awful enough on its own, but imagine if these possessions included thousands of dollars of medical equipment that you didn't have access to replacements for.

A few years ago, there was a major snowstorm in Pittsburgh - "Snowmaggedeon" - while I was a student at CMU living on campus. The snow came down quickly and heavily, closing all roads and shutting down the bus system, and leaving me alone, in my dorm room - my attendant was not able to make it. I had to rely on the campus EMTs to help me use the bathroom, and had to sleep overnight in my wheelchair because I didn't know that anyone would be available to help transfer me to/from the bed, and I didn't want to be trapped there. Luckily, my mom was able to make it to campus the next morning to help me; otherwise, I have no idea how long it would have been until anyone else was able to be there.

All this is just to say that natural disasters are terrible experience for all affected by them, and that you may not fully realize the effect that they have on people's lives! So please, donate if you can, and keep everyone affected in your thoughts and prayers.