First, They Came For Disabled People

Hello,

For the past two weekends I had the privilege to see Orange County Community College's production of "The Diary of Anne Frank". My sister played Margot Frank (and did a great job btw) so I saw the show four times. Watching the story of the Frank family, the van Pel family, and Mr. Pfeffer reminded me of several things. The first being NEVER ever hate someone because of who they are and what they cannot control. The show also reminded me to always be thankful for what you have, while Anne Frank was frustrated with the conditions in the annex, she knew it was paradise compared to the concentration camps.

Seeing the show made me so grateful to be living in the time that I do in the place that I do. If I was alive in Europe during the Holocaust and did not escape, my death would have been a near certainty. Along with the fact that I am Jewish, I'm also disabled. The Nazis targeted the disabled community first. Over 250,000 disabled individuals perished in the holocaust. People with genetic abnormalities were also sterilized, so if I wasn't killed I would have been sterilized at the very least. It's absolutely revolting to think that people would have wanted me dead for being a disabled Jew.

 I am thankful that times have changed for the most part we must remember that it is never okay to harm someone because they are different, regardless of the scale of the harm. So to the people who think I'm going to hell because I'm a Jew, to the people who teased me because I'm a cripple, it is that kind of behavior that allowed the Holocaust to happen. We cannot allow a tragedy like that again, never again.

For more information on the disabled victims of the Holocaust, go HERE.

Crippie's Tippie- Do not hate, as Anne Frank said "all people are truly good at heart".

Pelswick Eggert: Best Cripple EVER

Greetings,

I was reminiscing about childhood cartoons a few days ago and I remembered my ALL TIME favorite cartoon ever, "Pelswick". "Pelswick" was a show on Nickelodeon created by John Callahan centering around a boy named Pelswick Eggert. Pelswick was a smart mouthed boy with a P.C single father, insane grandmother, and a fairy god-father. Pelswick was also a paraplegic or as he called it "permanently seated". I absolutely adored the show while it was running 10 years ago and I still love it now. Why? Because the show centered around a boy who's disability was secondary to the rest of his personality and story. He stood up to bullies (normally I don't like TV shows where the characters are wise-asses, but I make an exception here). The show dealt with political correctness and how to treat disabled people. The best part, it was a children's cartoon. It taught kids that children with disabilities are normal, that you don't have to act weird around the cripple (and they actually said the word "cripple" in the show YAY CENSORSHIP). The entire series of Pelswick can be obtained on amazon.com.

Crippie's Tippie- Expose children early on to various differences, they will be more accepting overall.

You're Not Alone

Greetings

One question that I get asked every so often is "Do you feel alone?". When I was younger (around 10) the answer was "OH MY GOD YES". I was actually rather upset then, I thought I was the only person in New York to have what I have *sob*. Then a miraculous thing happened, the series of tubes that is "TEH INTERWEBZ" came into existence. The internet is, in my opinion, one of the greatest things to come along for the disabled community (I'll elaborate on this in a future post). Thanks to the internet, support groups became sooooooooooooooooo much easier to find and join. So I became in contact with serval people who had what I have. Suddenly I wasn't alone! We started having yearly parties at my house with about 20 to 50 people with my disorder there. It was awesome. I now know hundreds of people with my disability. Some of them are half-way around that world (CRIPPIE SHOUT OUT, Hi Norwegians! I can see that some of you have been looking at this blog!). Some of them are literally 15 minutes away (apparently I was very mis-informed about thinking I was the only person in NY with MHE). I talk to them on facebook, I see them every once in awhile. We help one another out and we are always there for each other.
So to answer the question, no, I don't feel alone. There are people all over the world that know what I am going through and I know what they are going through. I am not alone. Not of my fellow crippies are alone.

Crippie's Tippie- If you are a newly diagnosed crippie, support groups are a great place to find... well... support. They're great places in general for resources and advice for your specific disability, cause let's face it, no one knows about it more than the people who have it.


P.S. Happy Passover to my fellow Jews out there, Shalom!

Disability & College

Oh Hai

As promised I would continue the discussion on how being disabled effects school, particularly college. First off, I chose a smaller campus that was for the most part handicap accessible. That was my first priority on my school wish list. Unfortunately the size and layout of various colleges kept me from going there, regardless of whatever education and scholarships they offered me. Once I selected my school I was surprised by how easy it was to get accommodations. I needed a dorm on the first floor, done. If I needed a copy of the teacher's notes I got them. I really was shocked at how pleasant that whole experience was. Luckily my disability hasn't effected the educational portion of my college experience. I wish I could say the same for my social life. The medications I take don't mix with alcohol, so I can't play drinking games with my friends. I can barely walk, let alone dance, so going to dances isn't exactly "fun". I have chronic fatigue (I get very tired, very easily) so I can't stay out at all hours of the night and what energy I do have is spent on my school work.

Dealing with that can definitely be a challenge. I try to keep in mind that I am not here to get black out drunk every weekend. I am here to get an education so I won't wind up on disability when I get out of here. Able-bodied readers, I have a question for you. What is the fun of getting black out drunk and spending the weekend vomiting?

Crippie's Tippie- Learn to make ice-cream related beverages. When you can't drink alcohol with you friends, chances are they will drink milk shakes with you. 

Disability & The School System

Salutations!

"What challenges does disability bring to the school situation?' That question pops up quite often. Having a disability can prove very challenging for many reasons. For the time being let's discuss K-12 because college is a whole different story.

Elementary School- Thankfully I wasn't terribly sick during elementary school, people didn't know I was disabled until 4th grade when I started getting worse. The main problem I had in elementary school was gym. I HATE GYM. Obviously, due to my crippledness I could barely do anything in gym. My family had to go to the school and ask the teacher to modify my gym activities. It was a small school so the teacher listened. The kid's usually pretty nice to me, except in gym. People used to laugh at me because I always was last. CRIPPIE'S TIPPIE- This is the point where you start having to advocate for your needs. If you don't bring the issue to the school's mind they are not going to notice. Parents, at this point teachers might start thinking you are a crazy whining parent (sorry about that) but you are the one who knows your child best and you are right. Also if you child is visibly disabled, perhaps go talk to their classmates to help them understand why your kid is different. 

Middle School/ Junior High- I was very sick during middle school. Due to my disability I was home schooled for most of my middle school years. The school was bigger and thus it became harder for me to get aid. I had to have a 504 (official plan of care) and meetings with the heads of the school to make sure I got what aid I needed. The aid I needed was a tutor, modified schedule, no gym, extended test time, and an aid to get from class to class in a wheelchair. There were times when we had to put up a big fight in order to get what was needed. The kids in middle school were acted rather nasty towards me. They ignored me, teased me, and tried to trip me on occasion. CRIPPIE'S TIPPIE- The bigger the school, the harder you have to fight. And again parents, at this point the people at the school will think you are insane and annoying. Too bad for the school. Again, you are right.

High School- I wasn't terribly sick during high school, but I still had my health issues. I had the 504 in order to get the modifications I needed and it almost always worked out rather well. I actually worked out my schedule so I could leave early. The kids weren't as stupid as they were in middle school, but there are always idiots that think it's okay to tease cripples (BTW, don't tease cripples, we have enough emotional baggage from being crippled). CRIPPIE'S TIPPIE- This is the point where the cripple has to start speaking for themselves when possible. Partly because the school system probably hates your parents by now, and partly because your parents won't be there when college comes around.

The Importance of Being Quirky

Oh hai,

I promised good news and good news I shall deliver. A few weeks ago Quirk Classics (they publish books like "Pride, Prejudice,  and Zombies") had a contest for artists to came up with their own book idea and cover. I came up with "The Importance of Being Earnest and a Pirate", and go figure... I'M A RUNNER UP! Check out all of the entries here! Congrats to the winner to the other runners up, Y'ALL ROCK! For good measure, here's my entry.

Now, why I am mentioning this? Apart from the fact that I am uber excited about it, humor has been a way for me to cope with my illness for a very long time. In other words, my disability helped me develop a sense of humor, my sense of humor helped me make a kick-ass entry, and thus my kick ass entry is picked as a runner up! While my crippled-ness causes many problems in my life, the perks make it sooooooooooo much more manageable.

Oh and BTW, if anyone has any legit questions to ask me about being a cripple, post a comment. Chances are I'll answer it.


Crippie's Tippie of the Day- If ya got it... flaunt it.

Dealing With Pain

Greetings Readers!

I'm having a bit of a flare up today, so I figured I'd give a big post of "Crippie's Tippies" on dealing with pain. Before I begin I should state that what works for me will not work for everyone, and that if you are in a considerable amount of pain, please consult a physician.

Crippie's Tippies For Dealing With Pain

-Find a pain medicine that works for you. If basic pain meds like Motrin don't work for you, see a pain management doctor. Pain management really helps me go through my day.

-Heat or ice. Either or directs more blood circulation to the area that is causing problems and relaxes the area. I prefer heat, but ice works wonders too.

-DISTRACTIONS!!! If the pain won't be going away any time soon (which is mainly my case), nothing works quite like a computer game where I can set things on fire.

-Mental Healing. I've tried things like breathing exercises and Reiki. They didn't necessarily work for me, but they have done wonders for some of my friends.

Again, everyone's situation is different. I live with chronic pain. Today a tumor behind my knee cap got tangled with some muscle or tendon. This is a general flare up for me, hopefully it will only last for a few days.

On a side note, I'll be posting some very good news soon. So keep checking in over the next few weeks! :D

Designer Wheelchair? Count Me In!!!

Whuzzup (I figured I'd spice up my greeting)

So while I was at the SPD portfolio event Monday I obtained some free magazines. One of said magazines was "Metropolis" magazine. While skimming through it I found a most interesting article about a Norwegian company Krabat. Krabat makes designer wheelchairs, not just any designer wheelchairs though... they make them specifically for children! I had to use a wheelchair as I child and I cannot even begin to describe how excited I was to see this. This wheelchairs not only look freakin' awesome, but they promote activity and health (they improve your posture, which can suffer with a normal wheelchair). Check out the article here.
Take a look at this thing and try to tell me it's not awesome!

It is so important for kids with disabilities to feel good about themselves. I'll go into detail later about what I'm doing with this cause, but for now... THIS WHEELCHAIR ROCKS MY WORLD!!!

Crippie's Tippie of the Day- Necessary doesn't have to mean ugly 

If You Can't Fly...

Salutations,

Yesterday I had a rather eventful day. I attended "SPD's March Madness Portfolio Review and Seminar" in NYC. I had an awesome time, and no one said my portfolio sucked. If you want to see my portfolio btw you can click HERE. While I did have an awesome time, due to my disability special considerations had to be made.

How "Normal" person would have attended this event...
1) Obtain a ride to the train station
2) Take the subway
3) Walk to the event
4) Enjoy said event
5) Repeat 3,2, and 1

Unfortunately, that wouldn't work for me. Apart from the fact that I have chronic fatigue and wouldn't have been able to walk from the train station to the event. I also cannot go on the subway, the vibrations from the cars travel up my legs and it hurts. So I had to go about this in a slightly different manner.

1) Obtain a ride to the event itself
2) Have a bunch of coffee because I wouldn't be able to stay focused otherwise
3) Enjoy said event
4) Obtain a ride back and fall asleep in the car

So, it's not what my peers would have done, but I least I went. Just goes to show you, as long as the destination is the same, who gives a crap it the journey is different.

Crippie's Tippie of the Day- If you want to do something, find a way to do it.

Look on the Bright Side

Salutations,

So, some good things and bad things happened to me this week. Let's get the bad out of the way first. Over the past week I started noticing that my left leg is getting weaker. It kept buckling when I wasn't walking with my cane. I also noticed that my left ankle doesn't move at the same speed as my right ankle. This is not good. I haven't done anything in particular to make my leg weaker. Sadly, this is just natural progression of my MHE. The tumors in my leg and ankle, plus years of using them have weakened my leg. I can't help but think of what this means for my future. Will I have to wear a brace on my leg? Will I have to walk around with a cane everywhere, even really short distances? How long before it gets worse? I wish I could answer these questions but alas, I can't. In the meantime I will just have to do some physical therapy exercises in an attempt to regain/keep what mobility and strength I have in my leg. This also goes back to my Crippie's Tippie a few days ago, APPRECIATE WHAT YOU HAVE WHILE YOU HAVE IT. It's discouraging that I will be losing function in my leg, but at least I still have function and I can still walk.

Now for the good news: I was able to color my hair on my own for the first time ever. Thanks to issues with my shoulders and neck I cannot properly reach the top of my head to color it. Recently, Clairol made a new type of hair color in foam form. This foam is much easier to apply that other methods, thus I am able to do it. This might seem like a really small insignificant event, but to me this is huge. I gained a small bit of independence. I was able to do something I thought I would never be able to do! And the best part? I didn't screw up my hair color that much! Sure, some parts are kinda uneven but it looks like high and low lights.

So let's recap shall we? I found out that my leg is getting worse and I was able to color my hair own my own for the first time. So do you think I had a good week or a bad week? MY WEEK WAS FREAKING AWESOME!!! Sure, my leg is getting worse, BUT I WAS ABLE TO DYE MY HAIR!

Crippie's Tippie of the Day- Always look on the bright side of life. Try to focus on the good things that happen in your life, it makes you feel better about the crap.