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.

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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.

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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.

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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.

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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?

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. 

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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!

How my mattress changed my outlook on life

One of the things doctors won’t tell you about having a mobility disability is that you won’t sleep. You will be tired all. the. time.  For most of my life I have woken up at least 4 times a night – sometimes more – to reposition. That means that, like an infant, I was waking my parents up several times a night just to help me out. I’m 24 – that is not cool fun. I had just accepted this was how it had to be. I can’t move myself, so of course someone had to help me, right? My parents both suggested that I try different mattresses but I was so convinced that it would never get better that I didn’t bother trying. Well, as much as it pains me to admit it, they were right (just don’t tell them I said so).

A few weeks ago while I was in the midst of whining about my back hurting, my dad insisted that I look at new mattresses again and pick one. I don’t know if you believe in fate, but if you don’t I’m about to make a believer of you: after years of putting off purchasing a new mattress, the Sleep Number bed I was looking at was on sale for just 2 more days after I decided to try a new one. Seriously, God? Thanks for the discount. After trying the mattress at the store, we ordered it in hopes that it would relieve at least a little of the pain I was suffering every night and hopefully allow all of us to get a little more sleep.

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But actually my sleep number is 35, just FYI

Since my bed got here, I have only woken up to reposition 1-2 times a night. Is that ideal? No. Would it be great to sleep through the night? Obviously. Is this much better than waking up every 2 hours? Absolutely. Especially after years of thinking that I was doomed to never get a restful night’s sleep for the rest of my life…because that is not a fate that I’m okay with.

So basically what I’m saying is that if you’re in a situation that is not where you want to be, don’t accept it. Many (not all) life changes are in your power and it is up to you to make your life – and your sleeping situation – into what you want it to be. It might take some trial and error, and you may have to admit you’re wrong sometimes, but sometimes being humbled isn’t such a bad thing after all.

How Do You Do It: Airline Travel

I’ve been in a wheelchair for the last 19 years of my life, but I would not consider myself an expert by any stretch of the imagination. I don’t usually feel I have a lot to offer in the way of new information to others with disabilities, because honestly I’m still figuring it out as I go.

One thing I feel pretty confident writing about, though, is traveling as a person with a mobility disability. Maybe it’s because we didn’t even know enough to be worried but even as a very young child my family never considered not traveling, just because of my wheelchair. As a result, I’ve got a few travel tips pertaining to flying, because I know this is something a lot of people who use wheelchairs (electric wheelchairs in particular) never do!

Bear in mind, I’m not an actual expert. This is all based on my own experiences. I’d love to hear tips from any other wheelies!

 

1. ASK FOR WHAT YOU NEED

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Frankly, this is always the case. When I was younger, I was always scared to tell people what I needed because I was afraid I was inconveniencing them. As I get older, I’m realizing that as a general rule, people really don’t mind helping!

Don’t be afraid to ask the flight attendants for another pillow for positioning, or a blanket, or even help moving your feet or arms to where you need them. I’ve flown many different airlines, but by far my best experience was with JetBlue. While my dad was reassembling my chair (see #3), the flight attendant held me so that I didn’t have to wait alone on the plane while my dad was preparing my seat. I mean, really? That is some serious service.

2. MAINTAIN A POSITIVE ATTITUDE

 

I have heard about a lot of negative experiences with the TSA but in the 15+ times that I’ve gone through a security checkpoint I have never had one problem. I attribute this to the fact that I have never gone into it expecting something bad to happen. I always make it very clear what parts of my body are sore or shouldn’t be touched, as well as what ways my body can and can not bend. As a result, my pat downs are always quick, painless, and generally pretty chatty. Instead of looking at it as a chore or an inconvenience, I look at it as them doing their jobs and am always sure to say thank you. I’m going on 18 years of traveling and I have never met a TSA agent who wasn’t pleasantly surprised by my upbeat attitude!

3. ASK TO GATE CHECK YOUR WHEELCHAIR

When you’re checking in, ask the ticketing agent if you can remain in your own wheelchair until you get to the plane door. This will allow you the freedom to get around the airport yourself, as well as to remain more comfortable than you will be in a standard sized manual chair. Due to the configuration of some airports, particularly the smaller ones, this isn’t always possible – but it never hurts to ask! If you do gate check your check, they’ll likely bring it back up to the plane door to meet you after your flight.

It helps to have a working knowledge of your chair. For example, I know that my wheelchair batteries are sealed gel cell batteries, which means they don’t pose any problems regarding safety. If you’re traveling alone, ensure that you know how to explain to a handler how to switch your wheelchair into manual mode, which is how it will need to be for them to navigate it to the cargo hold.

4. ARRIVE TO THE AIRPORT EARLY

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Airlines always recommend getting to the airport 2 hours early, but if we’re being real nobody does that. Well, YOU should. One time I arrived early and still almost missed my flight because they detected uranium on my hands when they swabbed them…what? Apparently sometimes bananas can do this (pro tip – don’t eat bananas if you don’t want to be labeled a terrorist). Generally I end up with a ton of extra time on my hands after I get through security, but it is much better than having to rush to explain all of my unique needs. Rushing tends to cause problems, so it’s best to be able to take your time.

5. BRACE YOURSELF FOR LANDING

This really only applies to people like myself who have very weak trunk strength – but it’s an important one. Even the smoothest landing comes to a very abrupt stop and will send you flying forward. I have never traveled alone so I have always had either a parent or a friend to “soccer mom” me and hold their arm across my chest to make sure I don’t hit the seat in front of me. If you’re traveling alone, you may want to ask about either a harness seat belt instead of just the lap belt, or befriend your seat neighbor! Most people are glad to help with things like this – even if it’s a little awkward. It’s something that a lot of people don’t prepare themselves for and you could be asking for trouble!

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If you don’t fly, you won’t have any blurry family photos taken at a German Christmas market. Would you want to miss out on that?
Hopefully these tips helped. Like I said, I’m not an expert! However, I have done a ton of both domestic and international travel and have been doing all of these things my whole life without any problems!

I’m Ready

I want to start this post with a little bit of a disclaimer. I’m not attempting to take away from the struggle of any minority. While I consider the United States in general an amazing place to live, filled with opportunities, anyone who identifies as a member of a minority group can attest to the fact that we have a lot of work to do. That being said, this is my personal struggle.
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I consider myself, as someone with a disability, as a member of the silent minority. Generally speaking, we don’t organize protests; we don’t stop traffic or storm shopping malls to make our points. As a result, disability rights and the problems that affect our community don’t get addressed. You won’t hear wheelchair accessibility addressed at the presidential debates, and as we discuss welfare reform you’ll never see mention of the fact that those who receive government assistance because of a long term disability are unable to marry those they love. Obviously none of this will be fixed overnight, but there’s a stigma here that needs to be addressed: the angry cripple.
In my 24 years of life, I have always made an effort not to be an angry cripple. Generally my family and I worked through any problems we had quietly and independently – because, in our eyes, we could have had it much worse. And that’s true. But it could also be much better. More buildings could be handicapped accessible. Public transportation across the country could be more readily available. Social programs could be adjusted to allow those with disabilities to continue to work and still receive the care they need.
It’s not a matter of being angry, or bitter. It’s about being vocal. Change starts on the smallest, most local level, and as I head into my second quarter of life, I’m ready to speak up. So if you see me complaining about accessibility or inequality, know that I’m not angry.

I’m just ready.

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Me being not angry courtesy of Melissa Gebert Photography

 

Gratitude

I am a part of a Facebook group for people with my disability (2 actually, one specifically for females). It’s amazing, honestly, what the Internet makes possible. Growing up I didn’t know anybody else that had my disease (Spinal Muscular Atrophy aka SMA) and now I could name probably 15 without batting an eye. It makes it much easier to compare notes, form friendships, and learn #disabilitylifehacks.
However, there’s one recurring theme in this groups that I honestly don’t understand – it’s the aversion to the word “inspirational”. Not even just the word – the concept. There’s something that, until the past few months, I didn’t even know existed known as – apparently – “inspiration porn”. This isn’t nearly as good as #foodporn, and I’m not even sure that right now I understand what it is. As far as I can gather, it’s the resentment caused when able-bodied people look at someone they perceive as less fortunate than them and get a warm feeling inside by helping them. It’s almost always done with good intentions, and often it’s not something the able-bodied person even realizes they’re doing.
So why are disabled people mad about it? I guess if I look at it objectively, I don’t want to be seen as someone who deserves to be pitied. I mean, given the situation I live an extremely comfortable life. But if my disability gives other people pause and asks them to take inventory of all the blessings they have in their lives, who am I to stop them? Just as I look at someone with cancer and inspired by their positive attitude, so too can others look at my inability to walk and do the same thing. Anybody who tells you their disability doesn’t make their life more difficult is lying to you, or in denial.

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I once read a Facebook status written by another girl with SMA about how she was angry because someone she didn’t know asked to pray for her. She wrote that she didn’t need prayers, and that prayers wouldn’t heal her, and she was doing just fine on her own. Now I don’t go to church every Sunday (or even every month) but I do know that we all need prayers. She isn’t wrong that praying and faith won’t give her the ability to walk again (if only it were that easy), but there was so much hatred in her words. I am a firm believer that praying with somebody, whether it’s to heal you physically or spiritually, has never hurt anybody. Sure, maybe that woman may have just checked “help an invalid” off of her to-do list – or maybe the experience would have stayed with her more permanently. Maybe the spirit of helping others would have prompted her to volunteer to drive those with disabilities to appointments, or to donate to a research program.

  
Every interaction that we have with another person gives us the opportunity to shape them. It can either be positive or negative. I would like to think that I can be “inspirational” without being pitied. I can be a reminder that maybe having the wrong paint color isn’t the worse thing that could happen to a person. And I’m okay with that…I guess you could call me an inspiration porn star.