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?

You’re fired

You know those shirts that say “I run better than the government”? I need one. And I can’t even walk. If I did my job as poorly as any given government agency, I would have been fired years ago.

youre-fired-15-5.gif

This past Saturday I received an envelope from the Department of Health and Human services, which is never a good thing. Inside was a letter telling me I had been deemed ineligible for MaineCare services. MaineCare, Maine’s version of Medicaid, is the only insurance carrier who covers Personal Care services. That means that private health insurance – like what you receive through your employer – wouldn’t cover it (which is a topic for another post). Because of the income limits on Medicaid, that means many people with disabilities have to hover around the poverty line just to get the care they need. Some states offer a “Buy-In” plan, which means that those with disabilities who make “too much” can pay a given amount to remain on the state insurance.

dog-rolling-in-money-o
What the government thinks people with disabilities do

One of the easiest ways to qualify for MaineCare is to receive SSI (Supplemental Security Income), which is given to any number of groups who qualify based on ability to work, and income. Because I make “too much” (trust me when I say it’s not that much), I no longer am eligible for SSI to help me cover my extra disability expenses associated with maintaining employment. When I found out I would likely be found ineligible for SSI, I confirmed with several people at both the Social Security Administration and DHHS that this would not affect my MaineCare services which I rely on for both health insurance and my personal care needs. I was told that it would not.
What I was not told was that I needed to fill out new paperwork to determine my disability status. I was not told that I would have to return paperwork to ensure I was disabled (despite filling the same paperwork out probably 10 times over the last 8 years) in less than a week or else I would lose my medical coverage. I was not told that I would receive a letter telling me I was ineligible, or that that letter wouldn’t include any explanation as to how that determination was made, or that that letter would have nothing but a link to the Health Insurance Marketplace – a marketplace full of insurance carriers who don’t offer anything that I need. I was not told that I would have to spend my Monday morning repeating my social security number over and over again as I was transferred from department to department to figure this out.

Squidwardheaddesk_zps54088388
A representation of what it feels like every time I call a government agency

In any private organization, somebody would be held accountable. But this isn’t a private organization – it’s the government. So really, I expect nothing better.

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.

41b0c210-1fd7-0131-2325-6a350b68c123.gif
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.

kylie-kendall-jenner-gif

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?

Asking For What You Need

When I did my first “How Do You Do It” post, I had no intention of making it a blog series. Honestly I didn’t really feel like I had all that much new to offer. But, I love making lists and using GIFs, and it turns out I actually do have some cool skills I’ve picked up through my years of being handicapped. 
One of these skills is being able to ask for what I need – whether it’s a glass of water or proper medical care. This is something that I still struggle with, and I think most people do regardless of physical ability. Below are a few things I’ve determined to be helpful. 
1. Determine whether you actually need it

It can be hard to confidently ask for something when it is something you can do without. My life is a lot of weighing my choices: Will the person doing this for me be more uncomfortable than I currently am if they don’t do it? If the answer to that is yes, I generally don’t ask for it or will wait until it’s a little more convenient. Which brings me to point 2. 

image
2. Timing

Asking for a drink of water right after someone has gotten back from being in the kitchen is not a great call. I was awful at this as a kid, mostly because I was awful at #3.

  
3. Planning ahead

If I know that I’m going to need a ride somewhere in three weeks, I try my best (though I often fail) to ask people ahead of time. This gives them the opportunity to shuffle their plans, or tell me they can’t help without feeling guilty. 

  
4. Be confident

This mostly comes into play when I’m advocating for myself with doctors. After 18 years of dealing with my disability, I can confidently say that I know more about it than the doctors in my area – through no fault of their own, it’s just the way the cookie crumbles. Because I am so confident in this, I know that I can ask for exactly what I need and don’t have to take “no” for an answer. It makes it easier to ask for what you need if you’re confident that you know what you’re talking about!

  
5. Explain the end goal

It’s great to ask for help in achieving just about anything, but if the person you’re asking for help doesn’t know what you’re trying to achieve they may not be able to help you! One example of this that comes to mind is when I ask for help repositioning in my wheelchair. My dad always gets frustrated with me because my go-to sentence is “Can you move me?” How much good does that do? It’s much more useful to say “My hip is hurting me, can you help me move so I’m not putting pressure on it?” It makes it easier on everyone. 

  
This isn’t strictly a disability problem – the more specific you can be the more quickly you’ll be able to work with someone else to get what you need!

Hopefully even if you’re not disabled, this was helpful. People really do want to help – you just have to be willing to ask!

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!