How to Concert ADA Style Blog Title

I Love Concert Season

Concerts. I love them. Don’t ask how many concerts I’ve attended, because the number does not exist. It’s a lot, and ever growing. It’s exhilarating. It’s social. It’s music. Music is proven to heal, increase your mood, and your lifespan. As with anything with a disability, it’s a little different – but I see it as an opportunity, not a barrier. I always accept the concert-going challenge.

 

The only thing I remember about my first concert was thinking to myself “I’m six years old, and I’m out past my bedtime. This is cool.” I know it was Rick Springfield (or Styx – no clue which came first) I don’t think I went to another concert until the summer between 7th and 8th grade. I went to a country music festival (that you couldn’t pay me to go to now) that started my love of music – and the concert life.

 

My first concert at an actual arena was Rascal Flatts (to this day still a total fangirl). I had no idea what to expect, so it totally threw me off when a radio DJ handed me a radio meet and greet. It feels like you just won a Golden Ticket every time that happens. My first meet and greet I know I tried to take Jay DeMarcus home as a pet. It’s the first of many hilarious encounters.

 

How do I concert? It depends. It depends on the venue, on the day, on the time, and on my people. Yes, my people. I have great concert-going friends. Over the years, we’ve learned what’s best for us and how to fight (respectfully) to make sure we all have a great experience. Not every experience can be absolutely perfect, but I can say I’ve never hated any concert experience. (There was this one time – but management made up for it – so it’s forgiven) We always make a game plan. Whether it’s making sure we have enough time to get there early, calling to make sure they know I’m going to be there, talking to security (I’ve had my own security guards on multiple occasions) – there is always a way to make sure I get a fair shot.

 

Ninety-nine percent of the concerts I go to are general admission. Meaning, the people in the front of the line will most likely be heading to the front row. (Or if you’re in Nashville, the good seats at the bar) Arriving a few hours ahead of time and line-sitting can be as much fun as the concert. I met most of my best friends waiting in a line. By most, I mean all but one of my friends – And I have the best friends in the world. To me, a concert is more of a social event than seeing the artist. I mean, meeting the artist is cool and it’s fun to reconnect a year or two later to realize how much has changed in that time, but to me, it’s more of catching up with friends that have that same feeling when they hear their favorite song live.

 

Some venues do let people with disabilities in first IF asked (or you have a connection inside) This is why you always make friends with security, managers, the band. I’M NOT SAYING ABUSE YOUR POWER. I will never ever, ever step over the line (I mean, I can’t step anyway) but use your resources. Don’t beg, plead, poor me. The most effective way to get in early is to say, “Hey, I don’t want to get trampled or hurt anyone else. Can I get a five second head start?” Works A LOT of the time. If I’m not there early enough, my friends and I will work our way to a spot I can see. It’s not always the front row. Sometimes it’s a balcony. Unless it’s The Rave and they tell me the balcony is accessible but there’s a STEP TO THE BALCONY. But The Rave and I have made up. We’re cool now. Their security is fantastic.

 

Not everyone in the crowd can see either. If you’re short, stuck behind a tall person it’s unfortunate, but you’re there for the music and as long as there’s a friend with you it’s all okay, because that’s what concerts are for… listening to music, and friendship. I don’t EXPECT special treatment just because I am in a wheelchair. I know I DO get it sometimes. // SHOUTOUT TO THE MAN WHO GAVE ME MAREN MORRIS MEET AND GREET LAST YEAR // I try not to get too used to it, because I don’t want to expect it, and demand more than equal. I’m entitled to an equal experience as an able-bodied person. Nothing more. I can’t expect water bottle service in the front row every concert. (Same Maren Morris concert – The Rave and I really made up)

 

I have also learned that there are just some venues I won’t deal with anymore. There are festivals I won’t attend because, while they’re “accessible”, they’re almost impossible without help, and they’re not worth the crowd, time, energy, money. Certain festivals are great (Summerfest, CMA Fest) others are muddy, and grassy, and rocky and gross. They’re just so much work, and they’re in the summer so they’re hot with no easy way out. But it’s okay, there’s always another concert. The ADA only covers basics – having a section that’s accessible, accessible ticketing (which I find is a benefit in instances where tickets are hard to come by),

 

There’s always another concert… says the person who went to a Dan + Shay concert every month for six months straight. But they’re the sweetest people, so I have no regrets. Guys, if you happen to read this – love you, mean it. Miss you, mean it. Since I’ve been sick for like a year – exaggeration – I have to remind myself that they’ll be back. Except for Justin Timberlake. I’m going to that concert even if it’s the last thing I do. You only see JT once. (Yes I’ve mentioned JT in like three blog posts, but I’m really serious about JT – also it’s gonna be May soon – so it’s prime JT season) I’ll enjoy that concert from the last row because at least I’m there. I’m there, and I’m alive and music makes me happy no matter how I enjoy it.

 

Grey's Anatomy & Media Bias Vs. People with Disabilities Blog Title

Grey’s Anatomy and Media’s Portrayal of Disability

I have Spina Bifida. It’s not a death sentence, I have a more severe form than a lot of people with Spina Bifida. In 1991, most women did not know they were having a baby with Spina Bifida, and when the baby was born, often doctors would recommend letting the baby die of infection from the open and exposed spinal cord. Now, not only can you find out the baby has Spina Bifida around halfway through pregnancy, many times fetal surgery is an option. It wasn’t an option until the late 90s/early 00s. Even with the option of fetal surgery or just having the baby, Around 70% of babies who are found to have Spina Bifida are aborted – and it’s normally the first thing that doctors recommend… in 2018.

 

Portrayal of Spina Bifida on TV is rare, but it’s happened twice on Grey’s Anatomy. Grey’s is my guilty pleasure even though it’s inaccurate, dramatic and EVERY REGULAR DIES. Back when Meredith and Derek adopted their daughter from Africa, she was said to have Spina Bifida with clubbed feet. Once they did the shunt surgery and her casts were off it may have been mentioned one more time, but that story line faded and she’s got no issues whatsoever. That doesn’t happen to ANY kid with Spina Bifida. If you watched the series starting now, you’d never know that even happened. I even had to go back to make sure it actually happened. I know, it’s a television show, plot holes are common, but it would’ve been nice to be represented at least a little

 

On a more recent episode, there was a mother who has tomophobia (Fear of surgery). That’s fine, it showed something real. This soon-to-be mother was pregnant with a child with Spina Bifida, and a candidate for fetal surgery to close the hole in the back to potentially lessen the severity of Spina Bifida. I have NO problem with this. It’s up to the mother whether they want to go through this OPTIONAL surgery. It may improve some movement, and allow them to walk (normally with braces). It’s the mother’s choice. It’s a great medical advancement.

 

However, the doctor in the episode seem to BULLY this poor mother-to-be into the surgery making it sound like it was the ONLY option for her baby’s survival. The mother is afraid of surgery, and you’re telling her the baby won’t have a good life without it. In a conversation with my own mother, she said it’s terrible that the doctor on the show felt the need to “play God” when the baby could be born and still live, but any time you go into a surgery, there’s a risk of losing the baby, or the mother, or both.

 

Beyond that, fetal surgery is SO NEW, those babies who first had it are just now turning into adults, and no one knows how fetal surgery affects you going into adulthood. I know a lot of people with Spina Bifida who can walk with braces, only to have to go full time to a wheelchair in their 20s/30s. So is prolonging the time to go to a wheelchair even fair to the child? I know if I were able to walk in the first place and to lose something I had, I probably would go into major depression. I’m okay with myself and my disability because I can’t miss something I never had.

 

Walking with braces HURTS too. I did when I was a child up until sixth grade. I went to physical therapy twice and week, and while I didn’t mind physical therapy that much, I HATED when I had to put on that brace and walk around. I fell so many times. It was great for my parents because they did get to see me stand up, and I’m not traumatized, but it wasn’t like I was always in my brace and it wasn’t a practical option for every day life. I don’t mind using a wheelchair… except when things are 10 feet high.

 

Children with Spina Bifida regardless of what level/severity are still likely to have hydrocephalus, need a shunt placement, and scoliosis and need back surgery to correct it. I almost died from complications of back surgery when I was 12. I’m still glad I had it. There are necessary surgeries, and unnecessary ones. Doctors will recommend a million of them to you, and it’s okay not to take them. If I was terrified of surgery I would not let a doctor tell me I need to have fetal surgery for my baby with Spina Bifida because there are plenty of us living great lives.

 

Doctors also shouldn’t go to patients homes and stalk them (yes, I know that was just for the drama of the show). They also should NEVER say your child will have a “better chance of normal” to scare an already scared mother into a surgery she doesn’t want. The patient checked herself out because she didn’t want it. That should’ve been the end of story. Instead, they continued to make it look like people with disabilities don’t have worthwhile lives.

 

My life is worthwhile – and I say this while I’ve been bed ridden for over six months. Six months out of my lifetime IS NOT HORRIBLE. It’s annoying, boring, a little depressing at times, but it’s temporary. You can get in a car accident and be in the hospital for a year. You can become disabled in an instant. The media SHOULD NOT be portraying disability as a burden, a lesser way of life, or depressing. I know able-bodied people who have way more depressing lives than I do. It’s perspective. My life is fulfilling and I don’t want to learn how to walk, because I’d have to relearn how to live.

 

Media controls our ENTIRE life and seeing disability portrayed negatively on one of the TOP SHOWS ON TELEVISION is so disheartening. It shows little progress to inclusion. It further tells society that we’re not worth it, we’re sickly, we’re not equal humans. Yet, 20% of our population is disabled. In such a “progressive” show, I expected more and had the mother agreed to fetal surgery, it’d be okay. But not the bullying a mother into it, because her child would’ve probably been just fine without it.

 

I hate the beach blog title

I Hate the Beach

I hate the beach.

 

Okay, that’s a lie. The beach can be beautiful and relaxing. It’s the dream destination we all have when there’s six feet of snow and the temperature is 100 degrees below zero. But, I really don’t like the beach. I don’t feel independent on the beach. I don’t feel that same free feeling many people feel and crave. When I was younger, I loved the beach. I don’t remember this, but I wrote a poem about how I hope to go back to the beach some day. (Thanks dad for reminding me that I actually do love the beach although I say I hate it)

 

Now, they have beach wheelchairs that you can use, and those are a great adaptation and I’ve used them, however, I still hate not being able to move myself in one of them. Beach wheelchairs have gigantic wheels to roll over the soft sand. I don’t know how many of you have tried to push a manual wheelchair through a bunch of sand, but it doesn’t work very well. And you absolutely CANNOT bring a power chair to the beach.

 

Low tide is actually my best friend. I can go out on a boardwalk and get onto the hard sand during low tide. My favorite thing to do when we would go to the beach with my grandparents would be to collect shells with my grandfather at low tide early in the morning. So, I guess I don’t hate the beach all that much. I mainly just hate sand, which WHO DOESN’T HATE SAND?

 

While there are plenty of accommodations that are made to assist people with disabilities at the beach, the TRAVELLING there is the hard part.

 

Airplanes

 

I went on vacation at the beginning of July… on an airplane… with no problems. Total shock when it came to I finally knew how to handle the airport. Normally, a person (who had made an accessibity request on their reservation) will have an assistant waiting for them at the front of the airport. I – for one – have had to track down a person every time I’ve flown. Or had airport workers do it for me. Because if you have never tried to carry or roll a 50 lb bag while pushing a manual chair, consider yourself lucky. It’s quite the trick. There’s no better feeling than to have your bags checked and not have to worry about them (you know, unless the airline loses them)  

 

I have a 20 pound manual chair. It’s – for the most part – compact. Depending on the customer service agent at the desk, the check in of the chair can be real long, or real simiple. At 4:30 AM, you kinda just want to fall asleep while they create all the tags and routing for it. (And if you have a layover… you get ALL the tags) Now, if you think THAT’S a long process, try going through the security checkpoint. Able-bodied people complain about the random searches. People in wheelchairs are full body searched EVERY. SINGLE. TIME. I mean, I’m definitely okay with it, because better safe than sorry, it’s just… adding an extra 20 minutes to my rush to the terminal for pre-boarding.

 

Oh yeah, that’s the best perk, always pre-boarding (provided I make it there in time) and almost always the first row seat (and sometimes I even spring for the window seat). The process getting into the plane, is the worst. It includes a lot of personal space invasion and a lot of I HAVE DONE THIS BEFORE LET ME TRANSFER MYSELF to an aisle chair that is skinny enough to get into the aisles of an airplane. Yeah, I’m pretty independent and I know they have to ask questions, but I’m verbal about “let me do it.”

 

As good as it is being the first one on the plane, it’s terrible having to be the last one off the plane. Especially with layovers of less than an hour in an airport you’re not very sure of… Case in point – Baltimore: I had 45 minutes to get from one end of the airport to the other. Literally the furthest gates away from each other. Thankfully, I made it. I didn’t get a snack and I was starving… but I made it.

 

Oh, and baggage claim is hard. I tried to get help in O’Hare one time grabbing my bag, and they told me the accessibility help was in terminal 2… when I had just left the “no re-entry beyond this point” area. So either I had to go through security again, or I had to figure it out for myself. Thankfully some kind strangers (who barely spoke English) were going the way to the bus terminal to catch a shuttle, so I was forever thankful for them toting my 50 lb bag an incredibly long way.

 

Trains

 

I LOVE train transportation. I would take a train everywhere if America was set up that way – but unfortunately, we’re not. Amtrak – how I love Amtrak. First, persons with disabilities get a discount if they stay in their chair (but 99% of the time, I get to transfer into a seat anyway because the train isn’t full)

 

Second, they have OUTLETS and most of the time FREE WI-FI. I hate being called a millennial, but I am 100% dependent on my phone and I admit it.

 

Plus, they have nothing but royal treatment for those with disabilities. Not that we should have BETTER treatment than anyone else, but it’s nice to be actually thought of sometimes, than “what do we do with the girl in the wheelchair” (how I feel when I ride a bus)

 

Okay, so you got to your destination, what about the place you’re staying?

 

Most of the time, I love hotel rooms. Many hotels are updating their ADA rooms to actually EXCEED expectations. One time, I cried because the bathroom had a bathtub AND  roll in shower with a hand-held shower head… and I didn’t even need to call to get a shower chair. Most of the time, when I call to get a shower chair, it takes about five maids to find one, and I don’t understand.

 

I take note of every detail in a hotel room that is or isn’t accessible. The last hotel room I was in, was actually pretty good – except they had a small round table that was blocking the bathroom door but was easy to move out of the way. The ice bucket was also at the top of the closet which made no sense to me. BUT IT HAD AUTOMATIC CURTAINS. So, that was cool. I might’ve played with that for 10 or 20 minutes. Maybe.

 

Part of adulthood is the traveling, and the independence you feel when you’re on vacation. That freeing feeling we all crave and miss when it’s over. The more we can