The danger of being sheltered

As a sibling who lives with her much younger brother, I find myself constantly amazed (and not always in a positive way) by the new curriculums being taught in schools. New methods of math, countless hours of standardized testing, and, at least at my brother’s school, the replacement of the word detention. Although I don’t agree with these things, I can tolerate them. One thing I can’t tolerate is willful ignorance. 
My mom shared a letter with me from my brother’s school – my alma mater – saying that the 6th grade curriculum would no longer include a Holocaust unit. Not just any Holocaust unit – one taught by a teacher who’s been teaching it for over a decade. Who’s won awards for it. Who’s put their heart into teaching this sensitive subject to a class of 11 year olds with a grace and respect that most couldn’t. 

Why has this unit been removed? Why would a school take this award winning unit away from its students? Without getting into the details of how the school officials arrived at this decision, which has been 3+ years in the making, it’s because one family was made uncomfortable. That’s right. The parents of these two children decided that their children’s discomfort with genocide (news flash: genocide isn’t supposed to be comfortable) was more important than every other student’s right to learn about the Holocaust. They threw enough of a fit that the school administrators decided to cater to one family rather than support a veteran and talented teacher. Because of one student’s lack of ability to process the real world, kids like my brother will no longer have access to the award winning curriculum. 

This kind of thinking is creating a generation of kids incapable of empathy. Why should we not teach about the Holocaust? In high school, I don’t remember thinking I was too scarred by the Holocaust unit in 6th grade to carry on with my life. I do remember thinking that it was unfortunate we didn’t learn about the more recent genocides – in Rwanda and Darfur – that people in our parents’ generation could have done more to prevent if more people had even known about it. Many kids my age don’t even know about these genocides which happened less than 30 years ago. Maybe it’s too uncomfortable to talk about? Maybe they prefer living in the cozy, small town bubble too much to think about something as upsetting as genocide a half a world away. 

Furthermore, why should we allow a handful of students’ unease dictate an entire curriculum? While he may be privileged enough to never have had to learn to process horrific things in his 11 years, this could have been seen by his parents as a teaching moment – a chance to learn how to be empathetic to problems that don’t directly affect you. Instead, it was used as a way to teach this child how to shut out everything bad. There’s a term for this: sheltered. How can a child who has been sheltered ever be expected to go forth in the world and improve it, if he refuses to acknowledge its even broken?

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Being scared isn’t a bad thing

I’m always pretty open on social media about my disability. I mean, I can’t really hide it. I talk about lack of public access, or funding problems, or not being able to open jars and Pop-Tart packages. But one thing I don’t address publicly very often is that having a progressive muscular disease can be pretty damn scary.

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This cat doesn’t have thumbs and can still open jars better than I can

I don’t talk about it a lot because, truth be told, I don’t think about it all that often. It doesn’t affect my day to day life, and usually the progression is slow enough that I don’t really notice it until suddenly I can’t do something I used to be able to. I generally don’t think about the fact that I could be one illness away from losing the ability to independently breathe overnight. Whenever I say things like that I feel like I’m being a fatalist or morbid but the fact of the matter is it’s just the reality of the situation. Avoiding the topic isn’t fair, because it’s okay to be scared and it’s okay to let others know you’re scared – we all feel it sometimes, and it doesn’t have to be disability related.

I have been so blessed with friends who are willing to share the burden with me. I may get scared but I never feel isolated. I met my best friend when she was 15 years old – and let’s be real, what 15 year old girl wants to deal with doctors appointments and talking about how a common cold leads to pneumonia? None of them. But she did, and over the last 6 years she has been through so much with me that I’m surprised she sticks around. This goes for all my friends. Last night when I told them I was nervous about an appointment today, all of them offered to drive and go with me. Not out of guilt or pity, but because they knew I would do the same thing for them.

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If I could offer any advice to anyone – disabled or not – it’s to build a support system. Surround yourself with people who you can discuss your fears and weaknesses and insecurities with, and make sure they can discuss theirs with you. There should be no shame in being afraid of things, and I’ve found that more often than not talking through the things I’m worried about with someone close to me can calm me down enough to start thinking more clearly instead of spiraling into an anxious mess.

Sorry for the heavy Thursday morning post…but at least tomorrow’s Friday?

Happy birthday, Daddy

Today’s my daddy’s birthday, so when you’re done reading this be sure to go wish him a happy b-day!  
The real point of this post, though, is a thank you. Some of you may not know this, because really in the scheme of things it’s fairly irrelevant, but my dad is actually my step father. I set him up with my mom at my first “wheelchair party” when I was 4, and then was a part of their wedding when I was 7. But really, he’s the only man I ever have and ever will call my dad. 

It’s pretty uncommon to find a young man (well, he was young at the time) who is willing to date a single mom. I’m pretty sure that “must have a child” isn’t usually on the list of must-have qualities in a future partner. But a man patient enough to date a single mom to a child with a disability? That’s like finding a unicorn. My dad’s a really smart man so I can’t imagine he didn’t know – to some extent – what he was getting into. He was signing up for hospital stays, medical expenses, and helping with personal care for a daughter who wasn’t really his – all while working a full time job. 

  
I’m not saying all this for y’all to pity him, or to make our life sound terrible. I’m writing it because he would never complain about the extra work, and there isn’t a day that goes by that I’m not appreciative for all my dad does for me. He never makes me feel like I owe him anything – even after he’s worked an 11 hour day, and then has to help me take a shower during the little downtime he has. He’s so patient and, although like all families we have our problems, my parents, brother, and I all live a fairly “normal” everyday life. 

So, happy birthday Daddy! I hope you had a good day shopping for vinyl records like the old man you are!

What a wedding photographer did for me

In 2011, a friend of mine who knew I was interested in photography suggested I check out Katelyn James, a young wedding photographer. At that time I had no idea how important Katelyn would end up being in my life. 
For about 3 years after that, I was convinced that I was destined to be a wedding photographer. Not only that, I was going to be the next coming of Katelyn James. (Take it easy on me, I was in the middle of an early onset quarter life crisis.) It didn’t matter that I wasn’t physically capable of being a full time wedding photographer, or that my personality was entirely different from hers. All I was focused on was how much her blog posts (this is the one that started it all) and her photos inspired me, and that I wanted to do that for others. It wasn’t until I had been at my current office job for over a year, and gone through the depression associated with realizing that my disability would prevent me from achieving this dream, that it hit me. 
My purpose is not to be a photographer. It is not to model my personality off of someone I didn’t know beyond their internet persona. My purpose is much different, but equally as important. For years people have thanked me for the small bits of insight into the life of someone with a disability that I offered through my social media. The time has come for me to transform that into something more meaningful. 

 

My best friend Melissa and I with Katelyn and her husband Michael
 
After 5 years, I was able to meet Katelyn and hear her speak just over a week ago, and she said something that really resonated with me: pain has purpose. My struggles with my disability (and with life in general) offer many teachable moments for myself and for others. I truly hope that by sharing both the good and the bad parts of my story I am able to help even one person – with or without a disability. I’m fairly certain that that is my purpose.