The Horrors of Willowbrook State School

[Warning: Today's blog deals with a sensitive topic. It includes images that are hard to take in. Read at your discretion.]

In 1938, a state-supported institution for the mentally handicapped, known as the Willowbrook State School opened in Staten Island, NY. It was originally opened as a treatment center for disabled and injured World War II veterans but was quickly rebranded as a school for the mentally disabled.

Willowbrook State School (Courtesy of Opacity.us)

To cut to the chase: The lessons that were learned there were not academic.

The school was bringing in more students than it could afford to. By 1965, the school that had room for only 4,000 patients had well over 6,000 and was well understaffed.

Instead of spending more so that the hospital could efficiently run the day-to-day operations, budgets were cut. Less money was spent on food or clothes, which meant, that many "students" were left running around the institution; naked and malnourished.

Patients at the Willowbrook State School (Courtesy of fsdtrust.org)

And it gets much worse. Neglect was common. Children would be locked in their rooms for hours at a time.

If they had to go to the bathroom, they had to go on the floor. If that wasn't bad enough nobody was coming to clean the rooms or change their bed sheets, which meant that the patients had to sleep on the floor, in their own fecal matter.

Patients weren't even taught to keep themselves clean. As former patient Judy Moiseff told rootedinrights.org:

"Residents would rarely shower, and were rarely taught hygiene and grooming skills at all." 

Courtesy of disabilityjustice.org

Moiseff told rootedinrights, that when the patients did shower they'd have to do it together and would be given only five minutes. There were no towels or soap, there was no toothpaste and there was absolutely no assistance. Without being taught proper hygiene many couldn't keep it up.

As a result of the squalor these patients were living in, 30 to 50 percent of them ended up contracting hepatitis--a disease that effects the liver. Symptoms include jaundice, fatigue, abdominal pain, nausea, diarrhea.

To figure out why this was happening, Dr. Saul Krugman, from the New York University School of Medicine, conducted experiments on more than 700 patients!

Dr. Saul Krugman (Courtesy of hiddenhistoriesofmedicine.weebly.com)

One particular experiment consisted of injecting the patients with the actual disease either through a needle or through the feeding of infected stool samples. Yes, technically these experiments were legal--the researchers had gotten consent from the patients' parents--but remember, these children had been ABANDONED by their parents.

In the early 1970's, rumors started circulating that children were being abused at the Willowbrook State School. Frequent reports by local newspapers such as the Staten Island Advance as well as the Staten Island Register reported about patients being beaten and killed by strangulation.

Former patient, Bernard Carabello, said of his time there:

“I got beaten with sticks, belt buckles. I got my head kicked into the wall by staff … most of the kids sat in the day room naked, with no clothes on. There was a lot of sexual abuse going on from staff to residents, also.”

Another patient, David Clark, told SILive.com that as a result of the physical abuse he had endured his eyesight had deteriorated.

It wasn't until 1972 that the horrors of Willowbrook State School were completely exposed by an up-and-coming journalist, named Geraldo Rivera.

Geraldo Rivera circa 1972 (Courtesy of WABC)

At the time, Rivera was working as a broadcaster for WABC in New York. He was contacted by a doctor who had just recently been fired by the Willowbrook State School and was looking to expose their cruelties.

Rivera was provided with a key to one of the hospital's buildings and without warning, he brought a camera crew inside to document his findings. Of course, what he found was horrific. In the 28-minute news report that followed, he confirmed the audience worst fears.

“This is what it looked like, this is what it sounded like. But how can I tell you about the way it smelled? It smelled of filth, it smelled of disease, and it smelled of death.”

The news broadcast did raise national awareness of the situation that plagued Willowbrook and many other mental institutions of the time and lead to a class-action lawsuit being brought against the state of New York.

Reforms were brought upon the institution yet it was several years before many of them were enacted. By 1987, the hospital was shut down and the land was sold to the College of Staten Island.

In that time between Rivera's broadcast and the hospital's closure, many patients were liberated; physically and mentally. Many of the patients went on to lead successful lives.

Following his release from Willowbrook, Bernard Carabello went on to become a government worker for the city of New York. Some went on to work steady jobs and some started families. Others moved into assisted-living housing. More importantly.....the two hundred or so that were able to walk out of those hospital doors in 1987 continued to survive.

The irony of the situation is that all of the Willowbrook residents were institutionalized because nobody envisioned a future for them.

Their doctors and parents believed that the world would chew these kids up and spit them out and so, naturally, they thought that shielding them from society was the best option.

Yet they actually ended up enduring much worse circumstances and surviving. Sure, many patients died at Willowbrook. But more than 200 survived. More than 200 overcame the hand they'd been dealt.

To find out what these survivors have been up to in the past 30 years:

On Imagining People Complexly (A Reflection)

Welcome back to my little corner of the world! Hope you all have had a great two weeks and that you've taken the time to properly mourn the loss of the Artist Formerly Known as the Formerly Living Human Being Prince.....too soon? Oh well, on with your regularly scheduled reading.

I began writing this blog around four months ago now.

At the time, I didn't really know how long I'd be able to keep it up. Okay, I've been doing this for a class so I've had to keep it up but that doesn't mean that I thought I'd be able to. Yet I've found that I've actually been able to learn a lot about the disabled community and that throughout the years; I've actually learned things through my own experiences.

With this blog, I've wanted to raise awareness about what it's like to live with a disability. I could've shared all sorts of medical studies and facts about different disabilities but would you have really come away from my blog feeling enlightened?

What's more important to me and frankly, more interesting to me, about anyone that has a disability is how they live their life. As I've said in a roundabout way before: The person has the disability. The disability does NOT have the person. The disability is a part of who that person is. It is not ALL they are. Disabled individuals are just as complex as anyone else.

One of my favorite novels is Paper Towns by John Green.





















The novel follows a senior in high school named Quentin Jacobsen, who has been in love his whole life with the girl-next-door, Margo Roth Spiegelman. They were friends growing up but over the years, they drifted away while his feelings for her did not.

She falls in with the popular crowd and Quentin falls in with the band geeks. Margo frequently parties and pulls elaborate pranks with the "cool kids" and frequently runs away from home. Quentin, on the other hand, plays videogames and stays home on Friday nights to work on his latest honors English paper. Needless to say, Quentin thinks Margo has a more interesting life.

To make a long story short, Margo runs away from home for good and, at least in the beginning, Quentin thinks she's on some grand adventure like she always is. This time is different.

Margo leaves behind clues regarding her whereabouts for Quentin to find and once he does, he is quickly lead on a great adventure. An adventure that teaches him how much he has misjudged Margo.

 No, Quentin doesn't find out that Margo is a part of some terrorist organization that's going to take over the world. What he does find out is this: 

 "The fundamental mistake I had always made—and that she had, in fairness, always led me to make—was this: Margo was not a miracle. She was not an adventure. She was not a fine and precious thing. She was a girl.”

Why was this an important lesson for Quentin to learn and how does it tie into what I've been writing about the last few months? It's simple really. Everyone is, at the same time, more complex and less complex than we make them out to be. Everyone is human and no human is one-dimensional.

I touched on this idea a few weeks ago but it bears repeating. Everyone deserves the chance to have genuine life experiences regardless of their abilities or their limitations. Part of having a well-lived life is having people to share it with.

I stated in my first blog, that being able to foster genuine relationships with people can be difficult for someone like me because of the stigmas associated with having a disability.

Upon first meeting me, some people cannot seem to separate the wheelchair from who I am as a person. They have preconceived notions about my cognitive abilities. These notions lead them to treat me a certain way, child-like, usually. Sure, when I begin to speak, they bring it down a notch. Yet then, the condescension in their voices is usually replaced by surprise.

Surprise that I can talk or that I'm not institutionalized (which yes, was a sad reality for many people back in the '50s).

Throughout the years, this has really angered me and it has prevented me from being genuine with people, at least, until I'm absolutely comfortable with them.

If I feel like a person isn't automatically seeing me beyond the chair I am not likely to want to engage that person. The frustration and annoyance of talking to a person who I believe are internally judging me, based on false perceptions, is enough to deter me from many social situations. Which is a shame because then I don't get to know many different people.

Of course, it's not fair to put all of the blame on other people because if I want people to really know me, then I have to make the effort to present the most honest version of myself that I can. I cannot make snap judgments about a person. Especially, if I don't want them making snap judgments of me.

It's something that I think we ALL need to do better. We all need to try better to see each other for who we are and not based on lazy perceptions we have. These perceptions can be damaging and drive us further apart.

"The Good" Deeds of the Able-Bodied

Welcome Back, everyone! Well, that's enough of an introduction. Let's get to it.

I was scrolling through Facebook a few days ago and came across something interesting. Facebook, as we all know, has become a dumping ground for the sharing of memes and viral videos. I usually scroll past such things but occasionally I'll find something that catches my interest.

Recently, I saw that one of my Facebook "friends" had liked a video of a little boy helping his friend score a goal. Note: the boy's friend is disabled while he is not.

The video starts out with both boys on the ice. The friend, of the child who I believe has Down Syndrome, slaps a puck over to him. The boy catches it on his hockey stick and tries to shoot. He misses. His friend then retrieves the puck and gives it back to him so he can try again. Again, he misses.

I'll save us some time: The special needs child misses every time. However, each time, his friend retrieves the puck so he can try again.

By the end of the video, the special needs child is inches from the net. Finally, the goalie, "subtly" jumps out of the way, although he could've easily swatted the puck away. The puck goes into the net.

Scrolling through the comments, I saw people wrote things like:

 "Faith in humanity restored." or "What great kids for doing that for their "special friend". Every once in a while, I'll see a video of an able-bodied student asking a special needs student to prom. It will be a big to-do and of course, the special needs child will be overjoyed.  

Now, every time I see one of these videos, it used to make me feel good. However, as I started looking at the comments on these videos the more annoyed I became. These comments all have one thing in common. They continually praise the able-bodied friends.....for doing what friends do.

Now, I have said this before and will say this again before my time on this blog is finished:

DISABLED PEOPLE ARE PEOPLE!

Of course, we appreciate the things our friends do for us especially, when they have to change plans because we're around. Any time anyone has ever accommodated me I have said thank you.

However, I have never felt bad for.... "causing trouble".

I don't feel like my able-bodied friends are doing me a favor by hanging out with me. If one of them invited me to a dance, I wouldn't idolize them for being so thoughtful (of course, this probably has more to do with the fact that I HATE dances).

On a similar note, when I go out to a restaurant, I don't feel gracious if there's a ramp or an elevator going into the place.

Why you ask? It's because I deserve the same experiences as anyone else. I'm not going to feel indebted to someone who's just letting me live my life.

Other people fail to realize that special needs kids do have lives, just like they do, and that's the reason that we praise others for doing good deeds. Because we consider those who are different from us and that appear "disadvantaged" to be in need of our help (on our terms, I should add). Having a hard time believing me?

Let's say that one day, in high school, you were in the lunch room with your friends. You noticed that a few tables down from you there was a student sitting by himself or herself. This student could've been disabled or not. It doesn't matter.

 Now, what did you do? Chances are that you invited them to sit with you. They may have even sat at your table everyday for the whole year.

If they became your friend, great! Good for you! However, I'm going to assume that, at least for the majority of people reading this, that didn't happen. Sure, you saw them everyday at lunch for the whole year but you didn't talk to them outside of that one period.

Why didn't you? The answer is likely: because they were different. It's not like you were embarrassed to be seen out with them. It's just that you didn't consider they did the kind of stuff that you do because they were different from you. It's not your fault.

Our society embraces diversity, but it's weird, we also keep it at an arm's length. Too much diversity  makes us uncomfortable because we can't grasp other people's cultures.

But stop to consider this: if we tried to get to know more people who weren't like us, if we saw a glimpse into their lives, how different would they really be?

 You've probably heard that line before. We say we promote diversity but personally, I don't think we do. At least not nearly as well as we should be. Our world isn't perfect and the people even less so.

But, we are all people and we all deserve to be recognized that way. We're all just rollin' through this life. Why not take this journey together?


That's all for now! See ya next time!

7 Tips to Get You and Your Child Through Elementary School

Last week, I began to address the question that all parents of children with disabilities face: My kid has a disability, now what? That is the question I'm going to continue to answer today.

One way that parents of able-bodied and disabled kids are alike, is that they are terrified of the day their child starts school. From birth until the age of three, your child has been in a bubble that you've created. Their routine consists of napping, watching television, eating three meals a day, and more napping. They've been under you and your spouse's watch the whole time; even when you're out in public they're in your grasp. Any incidents that have occurred have been scary but always manageable because one of you has been there to resolve it; now that is about to change.

I don't need to go into detail about how you might be feeling. You know. What I will do is give some tips on how you can get past this fear and make your child's transition into the world of education smooth. Let's go!

1. Get a note from your child's doctors and therapists documenting their needs: Before your child begins school you need to know what his or her needs are. Does your child have a learning disability? What help will he or she need to accommodate it? What limitations could a physical disability cause in a school setting? How can those limitations be catered to?

These are all important questions to find the answers to because you'll have to share this information with school faculty and administrators. They need to know what strengths and weaknesses your child has as a result of his or her disability so that they can provide the best services to him or her. Of course, you need to know your child's strengths and weaknesses too because you're their parent; you shouldn't be caught off-guard.

2. Visit the school prior to the start-date: Scheduling a personal visit in order to share information about your child's condition with teachers, principals, and administrators as well as to get more information about the school district and its services is a good idea. You and your spouse will need a closer look at the ins-and-outs of the school to make sure it can cater to your child's needs. If there are issues, address them.

(Side note: If there are other parents of disabled children in the district, reach out to them. They'll give you an unbiased opinion of the district and might share tips for getting through the year.)

When meeting with the district administration as well as school faculty members tell them about your child's condition but also about your child. Who are they as a person? They need to know your child first and the disability second. They are teaching your child. They are not teaching the disability.

And oh yeah, when attending any school meetings about your child......

3. Attend All School Meetings With Someone: This is a general rule for just about any significant meeting regarding your child whether it be at an IEP meeting or a doctor's appointment. According  to Spokane Community College, human beings only retain about half of all information given to them on a daily basis. As days and weeks go by, we slowly forget the information. This is a problem when it comes to making decisions regarding your child and when taking in sensitive information.

Your kid will be under constant review by their school's special education department. They will document any challenges your child has throughout the year so that come IEP time, they can look at ways to beat these challenges. This means that school meetings are not always going to be pleasant. So, you'll need another person in the room with you to make sure all the information you're presented with is absorbed. You need to make educated decisions about your child's well-being but cannot do that without hearing all of the facts.

Courtesy of Speech and Language Kids

(Side Note: Your spouse is always the number one choice but if they can't make it to the meeting invite someone who's a good listener and that you trust to come along.

(Side note #2: You can't just request Individualized Education Plans. You need to first get the note from your doctor detailing your child's condition. Then, the school has to set up a play-based assessment which is just as it sounds; I'll post a link about what the assessment entails below. Only then will the school get your child set up with an IEP.)

4. Correspond through journaling with your child's paraprofessional or teacher: Surprisingly, this is a perfectly acceptable, non-helicopter parenting, action. Like I said, those on your child's educational team are going to be constantly observing your child, directly or indirectly. Since this is always occurring there is no reason for you to be blindsided come IEP time.

To stay in-the-loop, this journal will be a source of communication between you and your child's educational team. The communication should be focused on any problems that your child has on a day-to-day basis in the classroom--usually of a behavioral or medical nature but it can also focus on academics. For example, if your kid didn't sleep well the previous night, let their aide know so that exhaustion is not mistaken for a bigger problem that needs to be addressed.

And now a couple of tips about the finer points of education: friends and field trips.

5. Go in and talk to the class prior to your child beginning school there: Elementary-aged kids are lucky enough to not be judgmental jerks. Of course, they're still kids and any difference between them and their classmates will spark their curiosity. You don't want your child to be bombarded with questions about their disability within their first weeks of school so, if the school allows it, go ahead and speak to your child's class about his or her disability. Answer any questions they may have about your child's condition so, your child can focus on making friends without a barrier between them and their classmates.

(Side note: Obviously, don't do this with your child's knowledge. Your child shouldn't even be there on the day that you do it.)

6. If a field trip is coming up, make sure your child can go on it: Although it may seem that the school has everything figured out in regards to your child; they forget stuff. For example, in fifth grade, I went on a field trip to Midewin National Park in Wilmington, Illinois. I was told it had an accessible pathway. 3 hours later, my dad and I were exhausted from walking through wheat fields and rocky terrain.

 No matter the disability, the field trip should be accessible to your child and the school needs to be held accountable for making sure your kid can go on it. Any problems that may arise in planning the trip need to be brought to you and your spouse's attention.

If your child is physically disabled make sure the school has gotten a handicap bus. If your child's class is going to see a show but, your child has autism and doesn't like loud noises, pack a pair of headphones in his or her backpack. Just inform his or her aide that the headphones are there.

Also, any faculty on that field trip is responsible for your child. Make sure they know that. Your child deserves to enjoy the finer points of education as any other kid.

(Side Note: If your kid is physically handicapped, see if your kid can invite kids on the bus with him or her. No need for your kid to be separated from their classmates if they don't have to be.)

(Side Note #2: In the instance that the school just cannot accommodate your child on a particular field trip, pull them out of school that day and take them somewhere special.) 

And for one of the most important tips, I can give you...

7. At the end of your child's school year, write a thank-you email:

Your child will have a lot of ups-and-downs throughout the year. However, as long as the school is doing right by him or her, everyone involved in your kid's success deserves a thank-you. A lot of correspondence between you and your child's school will be about the problems your child faces. This doesn't mean that the school isn't doing their job or that your kid is doomed. The problems are simply more important to address right away.

However, once summer break comes along, it is time to push all the problems aside and show gratitude. After all, without the help of the special education department and your child's teachers, your child wouldn't have made it this far.

Well, that's all for this week. As always, comment if you like what you've read and if you don't; comment and help me improve! Talk to ya later.

P.S. Here's the link detailing play-based assessments: http://speech-language-pathology-audiology.advanceweb.com/Article/The-Power-of-Play-Based-Assessment-2.aspx

A Prelude: An Open Letter to Parents of Newborn Babies with Disabilities (And Their Friends and Loved Ones)

It seems that in American culture, having kids is like a rite of passage. You've learned everything that you could have in the past 30 years or so, and now is the time to pass on that knowledge to another human being, one you've created and hope not to completely destroy. When you find out you're having a kid, the wine bottles come out, the confetti poppers go off and you crack open the ol' phone book to share the happy news! Of course, when you're going to be the parent of a newborn with a disability, this experience is a little different. Imagine this:

One of your girlfriend's closest "friends" hasn't visited in awhile. Luckily, you were hoping for the absence of this acquaintance. You and your girlfriend set up a meeting with the doctor hoping for some good news and... he has some! You're pregnant. Congratulations! You schedule routine ultrasounds and checkups, just to make sure everything is copacetic, through those many months of your significant other holding a human being inside of her. You both read every baby book there is-- What to Expect When You're Expecting seems like the most efficient one. You buy strollers, diapers, changing tables, and playpens etc. You begin constructing the baby nursery and decorating it with clown wallpaper and sports memorabilia, in an attempt to brainwash your child into one day giving sports corporations money, based on their belief that they're part of the team. You even start picturing your kid as the next Wayne Gretzky or Babe Ruth, after all, you were quite the athlete as a teenager. Then one day, you get a call from your doctor. He wants to meet with both of you. You get down to the doctor's office, he calls you in and sits you down, and begins to tell you that something is wrong.

His medical team was looking at the latest ultrasound and found something amiss. To be sure, they need to do another ultrasound. You sit in painstaking silence as you hold on tight to your wife's hand. The nurse tries to make small talk in an attempt to soothe the situation but, it's no use. Neither of you can talk, you can only worry about what's wrong. Fifteen minutes later, as you're waiting to be called back into the doctor's office, both of you are silently panicking. When he finally does call you both back in, he wastes no time. He tells you that, your baby will be born with a disability. The minute you hear the word "disability", you hear nothing else. In that moment, you're staring blankly at the doctor, glancing over at your spouse, and trying not to let your emotions betray you. But they do. A few tears begin to drop. You and your spouse begin to think but don't dare to say it:"Why us? What did we do to deserve this? Where did we go wrong?

When you leave the doctors office these questions and several others are still racing through your mind, through the next few days and popping up through the next nine months. For a few weeks, you ignore people's phone calls. How are you going to tell your friends and family?

Eventually, you and your spouse decide not to be beaten. Enough is enough. My child has a disability, so what? You call people back. You gather all the strength you can and you push through the next nine months, side-by-side. You both falter in your strength at one point or another but you use each other as a crutch. Nine months later you have given to the world the greatest achievement the average person can, a new life.

So, what is the point of me mentioning this struggle? What piece of advice could I possibly give without having a disabled child of my own? It's simple really, I was that child. My parents and every parent of a child with a disability would have never dreamed that they'd be put in that position.
However, they were.

 So, how'd they get through it? They decided that yes, their child was going to be different. Their kid would grow up and face obstacles every day of their lives and they would face them too. However, they had to decide that their child deserved anything and everything that able-bodied children would have. That's what parenthood is all about after all, right? Giving your child everything that you never had? Yes, there will be challenges along the way but that's all they'll ever be, challenges. We are all challenged every day. Your child will just have slightly bigger and more frequent challenges. Remember: The child has a disability, THE DISABILITY DOES NOT HAVE YOUR CHILD.

I believe that what's most daunting to new parents of children with disabilities is that they feel alone. Even though they know they couldn't possibly be alone, they feel like they are. They don't know how they can even begin to get help. The good thing is in this information age, support resources are not hard to find! The other good news is that my blog is meant to be anecdotal and informational.

Next week, I'll be sharing some tips for parents of newborns with disabilities. However, I'll start with a couple basic ideas right now.

Learn as much as you can about the disability: What is it? What kind of challenges come with it? How can you best accommodate the situation? Don't overwhelm yourself with information but learn enough to be able to educate others and not be lost during doctor's visits.

(Side note: There are organizations that are dedicated to certain disabilities. Reach out to them and  get involved with them. Go to expos and conferences if they have them. Get to know people through them that are going through the same thing as you and your spouse. The people that are going to help you the most, are the people that can empathize and that are educated on your situation, which means.....)

Courtesy of abilities.com

Once you are educated on the disability, educate others. Family, friends, teachers, therapists etc. Anyone that is going to have a close and personal relationship with your child in his or her formative years needs to know about your child's condition. (How they'll be able to help you, will be talked about in the coming weeks).

One thing that my parents have taught me is that parents really do know their children--at least when it comes to medical history. You need to try and understand as much about your child's disability as you can because, you need to make sure your child is getting the most out of services offered to them, mainly when it comes to medical problems and schooling.

Speaking of dealing with doctors, if the doctor you're seeing isn't willing to listen to you, find another one. It's not like you'll always know more than the doctor but you're the one spending the most time with your kid. You know how your child behaves and you know when something isn't right. Usually, you'll keep track of anything in their routine that changes. If you go to the doctor and consistently feel like you're being shut down, that doctor is not looking out for your child's best interest. Have a team of doctors on your side that are going to work with you and, politely rather than dismissively, tell you when you're wrong.

The first few years of your child's life will be daunting. It's a lot of research, monitoring, deciding what's working for them and what isn't, and making connections with the right people but, don't worry, you've got it. Take it day-by-day.

That's all for me this week! Leave a comment if you like what you've read and I'll see ya next week, where we'll be navigating the world of "special" education!

P.S. There are Abilities Expos held in select states during the summertime.
Visit http://www.abilities.com for more information about when and where they are.

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.