Awkward Encounter #2

My parents and my sister have always been there for me through countless doctors appointments, surgeries and everyday struggles. It’s safe to say that they know how to deal with my particular circumstances. However, just because they understand me and my disability and abilities; doesn’t exactly mean everyone in my family does.

 One night (I was nine at the time) my family and I had gone out to dinner with my aunt. We'll call her Becky. We had just gotten back to her house and sitting around the kitchen table; my sister and I were patiently listening as the adults made conversation. It's safe to say that at nine-years-old, I was only going to be truly interested in the conversation if my name was brought up. Eventually, it was.

"So Noah, how are you liking school?,” my aunt asked.

"It's okay", I replied. Side note: There's never a more boring conversation to a nine-year-old then talking about how they're doing in school.

"What's your favorite class?”

"Reading and spelling," I said. I've always been a proficient speller and since I've always liked to read and been a relatively strong reader, it was the part of my day that made getting up for school a little bit easier.

As soon as I answered her, she got up from her seat, said she'd be right back, and walked out of the room. None of us knew why she had gotten up but it didn’t matter. We carried on talking amongst ourselves. A couple of minutes later she returned. She had something in her hand. It was rectangular and on a lanyard.

I looked at it. It was a nametag, her work nametag.

"Can you read what this says Noah?,” she asked.

I was taken aback and somewhat amused. 

Usually, you don't ask a nine-year-old whether they can read something as simple as a nametag especially, when they just told you that their favorite subjects in school are reading and spelling.

Disclaimer: It had been awhile since we'd seen my aunt. However, she'd sent me a birthday card each year. She knew how old I was.

My first instinct was to have a snarky reply. Instead I said--while throwing her some shade:

"Yeah, it says Becky."

"Very good.," she responded in an almost too cutesy voice.

Now you might be saying to yourself--"Noah, a lot of nine-year-olds struggle with reading. Why does this exchange seem unusual to you?"

You’d probably be right. However, I hadn’t given her any reason to believe I had trouble reading.

If you guessed “Is it because you’re disabled?,” that would be accurate.

You see, at the time, my aunt didn’t exactly understand my disability. She knew that I’d undergone several surgeries throughout the years but that’s pretty much where her understanding ended.

It’s not her fault, really. She doesn’t live that close to us so we don't see her often. Of course, she’d make the mistake of equating my physical disability with a learning disorder because she doesn’t know that I lead a perfectly normal, day-to-day life. 

It still didn't stop the moment from being awkward and hilarious.

The minute I responded she knew she’d made a mistake.

“Oh”…. oh dear, my mistake, of course you can read.”

“Uh yeah, I can,” I responded.

Note: The entire time this exchange was occurring my parents kept their mouths shut and that’s a good thing. If they had said something, the next few minutes would’ve gone very differently.

“I’m so sorry, I don’t know why I thought you wouldn’t be able to read my nametag.” She knew.

“I-it’s alright.” At this point, I was ready to leave. I’m sure she was ready for us to go too.

After a few minutes of conversation, the type that you make to desperately change the subject and which seems to just linger, we said our goodbyes and left.

 As we got into the car, my dad was the first to speak:

“Well, um, that was a nice visit.”

“Yeah, tons of fun,” my sister responded.

“Yeah,” I said. I didn’t have much to say because I knew who would.

My mom was the last to get into the car. The moment her passenger side door closed and my dad pulled out of the driveway, the rant began:

“WHAT WAS SHE THINKING? “Noah, can you read this?,” She said in an imitative voice. “Maybe if she actually got to…

“Cari,” my dad cut her off. “She wasn’t thinking, you know that”.

“You don’t have to tell me. “That fu--”

“Mom, it’s okay. It was funny.,” I replied.

“Yeah Mom, to be honest Noah is kind’ve an idiot," my sister said.

My dad shot her an “if looks could kill stare.” My mom, not paying attention to what was going on, continued:

“But to have the AUDACITY to ask that. His legs don’t work we didn’t throw him HEAD- FIRST down the STAIRS!”

“Well, there was that one time, that Dad--.,” I said half-joking.

“Oh geez, not that again.” My dad said while chuckling. We headed home my mom continuing to rant the whole way. 

That’s all for this week and in fact for the next two weeks! Remember if you like what you’ve read, leave a comment! Talk to you soon.

The Long and Winding Road to College

Story time! No, I will not be sharing another awkward encounter today; that's for next week. Instead, I'm going to be sharing a different kind of story, one that allows me to be completely frank with all of you.

In my first blog, I mentioned how I don't like to be called inspiring. Nothing I do seems remarkable to me because I am simply living my life as all people are conditioned to do. That doesn't mean that I haven't encountered obstacles and been amazed that I'd overcome them, though.

At times, there have been obstacles that I hadn't even considered. This was never more true in any period of my life than the summer before I began college. 

For years I'd always known that I'd go to college. There was no question. If I was going to live a comfortable life I had to go. So, I went through the steps as any prospective college student would.

I toured schools and sent in my applications. I got accepted and registered for classes. I even went through the process of filling out FAFSA--a task which could be equated to spending a night in Azkaban and enduring a dementor's kiss, and yes, you need chocolate afterwards.

It's common knowledge that college is expensive. If you aren't getting an academic or athletic scholarship right out of the gate, chances are, you're one of the many entering the scholarship lottery. I was one of those students. I got lucky and won a few but I still wasn't set.

Luckily, for people with disabilities, the government has ways to help them out when they have other expenses to attend to such as the cost of an accessible van.

The Department of Rehabilitation Services (DRS), is a government organization where disabled individuals can go in order to get associated with vocational counselors. These counselors help individuals become active members of their communities by providing aid for schooling, providing in-home medical care, and job coaching. It seemed like the organization that could help me start my future. They were even aligned with the special education program at my high school so, I easily got a meeting.

I was ready to be told about how all my financial problems could be solved and my future could be realized. I believed I was all set. 

On my first official meeting with a vocational counselor, I was told that I was not eligible for funding because I was looking to go to a private university. However, my counselor said if I went to community college, they'd give me a full ride! She was very adamant that I change my decision.

Especially, because she had seen kids with disabilities set on going to a four-year university but end up not being successful. Although, I was initially disappointed that some lady from the government told me I couldn't go to my top choice, that day I wheeled over to my local community college and enrolled!

. . . . .

Courtesy of Inception 

Oh, wait. Nope, that didn't happen. My mistake. Instead, I just got really angry at her. It wasn't that I had anything against community college. It's a fine option for anyone. It was the insistence that I hadn't done the proper research, and that, I had just had my sights set on a prestigious school because I felt like I had something to prove.

Yes, I did have my sights set on one specific school. Yet it was not because of stubbornness or pride. It was because everyone deserves a good education and a good college experience. The University of St. Francis was where I was going to get it.

A large majority of college students choose where they're going to go to school based on a few criteria such as: cost of tuition, books, room and board, size of the school, location and whether the school has their program. These are only a few of the reasons but they are usually the first ones students will mention when asked how they made their decision. 

These are all important to me too but there are two more important factors, such as, "Is the school and all of its programs accessible to be me?", and if not, "Is the school willing to work with me to make them accessible?"

In my opinion, my local community college wouldn't have fit this criteria. The school was small but not quite small enough and the disability services seemed to be, just that, a service and nothing more. My mind was set. I was going to the University of St. Francis (USF). DRS told me that if that was where I insisted on going, they would only pay for my books. It was a small victory but a victory nonetheless. The only stipulation was that I had to apply for Supplemental Security Income (SSI).

NOTE: SSI is basically social security which people can claim if they are elderly or disabled. 

I'll spare you the details of how to apply for SSI. Suffice it to say that it's a long process of gathering financial documents, filling out paperwork and heading on down to your local government social security office for a nice little interview. A bit of advice when meeting with government officials, in the words of Aaron Burr--according to Grammy Award Winner and star of Hamilton: An American Musical Lin Manuel Miranda--"talk less, smile more".

We were getting down to the wire. Tons of people apply for SSI every day and, at least where I live, it's about a six-month process for approval. My mom and I were both calling the SSI office frequently to check the status of my approval; yet, they weren't returning our phone calls or we'd get on the phone with someone who'd say that my case was still pending approval. With about a month to go before school, we were at our wits end.

Until I was approved to receive SSI, I couldn't receive any DRS services. DRS was telling me that without approval they could only hold my spot for so long. It was awful. My family isn't one to be unprepared. With every obstacle thrown our way my parents have always done everything in their power to make sure our family got through it. Yet, they were beginning to lose it and so was I. 

By some miracle, one day, my mother got through to a lady in the SSI offices that could actually tell us something. I still don't know what this lady did that no one else could but she approved my application. I could now receive a monthly paycheck and therefore, services through DRS.

NOTE: Just to name a few of the services DRS approved for me: payment for textbooks, a laptop, and money for gas every few months.

Finally, we were all set! I could pay for school and go there with no other worries!

.....

Courtesy of Harry Potter and the Chamber of Secrets

Oh wait, that's not true either.

Two weeks before I began school, I met with the Disability Services specialist at USF. The last four or five times that I'd visited with her that summer, everything had been fine. I had height-specific desks in all of my classrooms and my accommodations for each class were set up too. There was even construction done in the radio station where I'd be broadcasting, two times a week for one semester, just for me!

Everything seemed so good finally but there was one tiny problem my parents and I had overlooked that the Disability Services Specialist had reminded us. I would need someone on campus with me at all times. 

We had never for a second considered it, not even with the money my parents had put into an accessible van. What were we going to do this time? With two weeks left before school there was no way we would win this battle. We were defeated.

The more worried my parents were getting, the more worried I was getting. The more frustrated they were getting, the more frustrated I was getting. Was I really not going to go to college? What would happen to me then? How would I get a job? Who would hire a kid in a wheelchair with only a high school diploma and no work experience? Would I have to live at home forever? These thoughts ran through my head constantly. It was a reality I never thought I'd have to face and it was scaring me to no end. 

We immediately considered one solution but it was a long shot: hire a neighbor to accompany me to school everyday. There was a woman who had gotten me off the bus every day since I was in 5th grade.

So, on a day when we were all particularly on edge, my mom called her up and asked for her help. She said yes and said that she might know another person that would be interested in being a backup aide. A huge weight was lifted off of our chests! We had conquered what seemed to be the impossible. Two weeks later, I was on campus. I was starting a new chapter.

That's all for this week. Leave a comment if you like what you've read! Talk to you next week where I'll be significantly funnier as I detail another awkward encounter. 

On Adaptive Sports

Disclaimer: The following post contains very minimal sports jargon. Viewer discretion is advised.

 Since the Super Bowl was last weekend, I decided this week I'm going to share with you some of the sports that are near and dear to the disabled community.

First up!

Wheelchair Basketball: This is probably the disabled sport most people are familiar with.

How it works: In wheelchair basketball the participants play in, you guessed it, wheelchairs. But not just any wheelchairs! These chairs are fashioned so that the wheels are angled into the player, giving them a faster turning radius. Also, it helps that the bottom rims of the wheels touch and the top of the rims don't. Wheelchair basketball is a high contact sport so, the players can't have their fingers getting crushed in their opponents' chair.

Photo Courtesy of didid.eu

Wheelchair basketball chairs also have aluminum or titanium guards across the bottom frame of the chair. This ensures that during the play the ball won't get stuck underneath the chair.

How does it differ from the able-bodied sport?

Wheelchair basketball and stand-up basketball have similar gameplay. Of course, there are minor differences.

1. The wheelchair is considered an extension of the player so it determines how all fouls are called. For example, in stand-up basketball, the foul charging is called when a player pushes or moves into a player's torso.

In wheelchair basketball, this same foul can be called. However, it is determined by the speed both players are moving in their chairs and the relation of the chairs to each other when a shot is attempted.

(Note: There are also stipulations on the chairs themselves i.e. height of chairs, height of seat cushions)

2.  One of the perks about using a wheelchair, is being able to carry things on our laps. Of course, if you carried the ball on your lap during a wheelchair basketball game, the game would get pretty boring, pretty fast. The National Wheelchair Basketball Association states that:

Section 1. To execute a dribble, a player may:

1. (a)  Wheel the chair by two pushes on the wheels (one hand or two hands in either direction) of the chair followed by one or more taps of the ball to the floor, after which he/she may start pushing again.
   
2. 
   

(b)  The player may not push more than twice, in succession, with one hand or two hands in either direction. Taking more than two pushes in succession constitutes a traveling violation and the ball is awarded to the opposing team out of bounds.

Currently, there are over 200 wheelchair basketball teams in the United States at all skill levels. 

Note: At the advanced levels of all of these sports there is eligibility for participating in the Paralympics against teams from all over the world. 

For more information on the sport and to find a team near you visit: http://www.nwba.org.

Wheelchair Softball: In the spirit of adaptive sports that are not so different from their able-bodied counterparts, we have wheelchair softball.

How it Works: Once again the players are seated in your run-of-the-mill wheelchair. The only stipulation for the chairs is that they have footplates. As in wheelchair basketball, the wheelchair is the extension of the player and all penalties are called based on this idea.

Note: These rules are the same as they are for non-adaptive softball according to the International Federation of Softball.

How does it differ from the able-bodied sport? In non-adaptive softball a player is considered on base when one foot or both feet are touching it. In wheelchair softball, a player is considered on base when one or both of their wheels are touching the base. If they are knocked out of their chair while running the bases, they are allowed to crawl the rest of the way; as long as their body makes contact with home plate.

The rules also state that no player whether offensive or defensive is able to advance towards the ball, if their feet are touching the ground. This rule is probably in place to make sure all players' centers of gravity are the same. All players that are on the field must have one wheel behind the restraining line, the line that runs the width of the field and divides the bases, until the pitcher releases the ball.

Currently, there are over 30 teams worldwide. This is another sport that I have only ever watched. However, like wheelchair basketball, the swiftness with which the players move around the field makes it fun to watch and I'm sure even more fun to play.

Visit http://www.wheelchairsoftball.org/?page_id=27 to learn more and to find a team near you.

Wheelchair Rugby: It's kind of like our football although; we can play an adapted version of that too.

How it works: Once again, this is a sport played from the wheelchair. The object of the game is to take the ball from the defensive zone to the offensive zone by: dribbling, throwing, batting, rolling or carrying the ball.

Like wheelchair basketball, the wheelchairs are fashioned so that the player has a fast turning radius and won't get their fingers smashed upon contact. Unlike wheelchair basketball the wheelchair as an extension of the player can still be used to affect play.

Note: This is a high contact sport and there is no protective equipment.

Photo Courtesy of Telegraph

How is it different from the able-bodied sport? Wheelchair rugby can be likened to four able-bodied sports: rugby, football, basketball and ice hockey. As I mentioned, the object of the game is to get the ball from one end of the court to the other, much like hockey. Like basketball and football, they are allowed to accomplish this task by passing the ball to a teammate.

Like all of the other sports I have mentioned this week, fouls are called based on the action of the player and the chair. This is not a sport that I have played or seen in person but I have heard from people within the disabled community that it is a high intensity sport and a fun one!

Video Courtesy of kyebosh on YouTube

Visit:http://usqra.org/rugby.php/action/teams/sID/2/rgID/1/ayID/2015/USQRAsid/vbg6n9tfrq3u4vnov3i32uccd6 (To find a rugby team near you!)

Sled Hockey: This sport goes in the category "Game That I've Actually Played".

How it Works: The players are sat in bucket shaped sleds, which themselves, sit upon two hockey skate blades. All other equipment is the same as regular ice hockey with the exception of there being two six-inch hockey sticks as opposed to one bigger stick.

The sticks have metal picks attached to the end of them, which help the players propel themselves as if they were skiing. All padding is the same and all games are played in hockey rinks.

Photo Courtesy of Cincinnati Sled Hockey

Photo Courtesy of Wheelchair Sports Federation New York Sled Rangers

How is it different from the able-bodied sport? If you hadn't guessed already, the sled is an extension of the player so it factors into how penalties are called. In sled hockey there are additional penalties that can be called on a player. In sled hockey there is an extra penalty called "T-boning".

This is when a player intentionally hits the side of an opponent's sled dead-on. This penalty was added so that the sled itself is unable to unfairly effect gameplay.

I've been playing sled hockey for about 5 years now and think it's great! It has the right amount of action and strategy that makes for a great physical and mental workout.

Check out this video from the U.S. Paralympic team:

If you want to find a sled hockey team near you visit: http://www.usahockey.com/sledhockey?id=902491-team-contacts

That's all for this week! If you like what you've read make sure to leave a comment! Let's get a dialogue going.

On Accessibility

If you're disabled like me, what I'm going to talk about today is going to be totally relatable. 

Not that my other posts haven’t been just as relatable, but everyone has different experiences that are unique to their situation.

Chances are though, that if you're disabled, you've been out in the world and had to deal with not-so-accessible-friendly situations.

Now, I don't like to fancy myself an authority on disabilities, but I do know this: Going somewhere that is not accessible, even if by ADA standards it is, can suck. 

When you're trying to make plans with people, or just going out on a Friday night, it can be annoying having to consider if you’re going to be able to move around certain places. 

Over the years, my parents, of course, have become accustomed to this life and so have I.

 How have we gotten over the curb? It's simple really: we research.

We don’t even think about going somewhere: usually, on trips or to shows or to restaurants too, if one of us hasn’t done research on where we're going. This is something that all wheelchair users need to do.

Are you going on a trip? Make sure the hotel you're staying at has an elevator and that you're staying in a relatively accessible area. If you want to partake in a leisure activity, such as walking along a nature trail, make sure the terrain is going to make for a pleasant stroll. 

 Side advice: Consult the nature preserve’s website and not the state's. Otherwise, you'll find yourself being pushed up a steep mountain, on rough terrain, holding on for dear life while onlookers give you well wishes and praise your determination.

 

Keep going they said.

 It'll be worth it they said.

If you're going to a concert, a play or a musical, make sure that you buy tickets for handicap accessible seating. You will need to look on the theater website well before the sale date to find out where this seating is. Don’t assume that the only accessible seating a venue has is in the back of the theater where visibility is low. 

Once you've done this, call the venue and get in touch with whomever is in charge of accessible seating. Get their name and make them aware of your situation. They may tell you that to purchase your tickets you’ll have to go to the venue or they might not. It all depends. On the night of the show, get there early. Find an usher, get seated and enjoy the show.

Courtesy of Michigan University

Side advice: Let everyone else clear out of the theater before you do. Don't wade through a crowd if you don't have to.

The last bit of advice I have is for if you're going to a restaurant. Know what the restaurant is like. Does it have steps leading into the building? Does it have steps leading up to separate floors? Are there elevators? Ramps? These are all important questions to find the answers to. 

So, look for reviews online or look for an accessibility application. If you can't find a suitable answer then try asking people in your social circles.

Disclaimer: This bit of advice mainly applies if you want to go out for an eclectic meal for once instead of devouring the usual TGI Friday’s grub. Like with all of my advice this week just know what you’re getting yourself into.

I’ll leave you with this last thoughtt: Just because having a disability makes traveling or going out in general more difficult, it shouldn't stop you from having a social life. 

If you want to wheel up a mountain, go ahead! If you want to go to the beach, that can also be accommodated. A lot of experiences can be made possible, you just have to ask yourself the right questions and do the research. See what options are available to you. People are willing to work with you and if they aren't then that's okay. You can have a good time and make memories anywhere.

Hope you enjoyed this week’s blog! If you have tips for planning outings leave a comment down below. Talk to you next week!