The purest love

If you ask just about any dog lover what it is that they love so much about dogs, they’re practically obligated to mention the phrase “unconditional love”. Unlike most things – although I might be biased – I am inclined to classify this as fact, not opinion. Even puppies who have been raised in abusive homes are known to try to protect the very humans who hurt them. 
  
Naturally, this is important to anyone. It is human nature to want to be accepted and loved. As a person with a disability I will take that one step (tire rotation?) further. No matter how great my support system is – more on that later – there will always be parts of my disability that are inconvenient to those around me. Do you know who has never cared even one bit about my disability? My dog. Actually, any of my dogs. I’m pretty sure it would be literally impossible for them to care any less – and that is an amazing feeling. 

  
Growing up, even before I used my wheelchair full time, I had a dog. He adjusted very quickly as I moved from a manual wheelchair to an electric chair; some might see this as an anomaly. I thought so too…except my post-high school roommate’s dog, who didn’t grow up with wheelchairs, never had an issue with it either. In fact, without much coaching she learned to place her front paws on my lap so I could easily pet her. Everyone I knew was blown away by the fact that my brand new Pomeranian puppy taught himself to ride around on my foot plates. I thought somehow this made him special…except my new chihuahua puppy taught himself the same thing. To them, the wheelchair wasn’t odd or inconvenient; it was just part of the human who they loved so much. 

  
The fact of the matter is that there’s no human that could ever be as selflessly loving as a dog. It’s not in our nature to overlook “flaws”; it’s something that we generally have to work towards. Dogs, though? We don’t deserve dogs…but I’m sure glad we’ve got ’em. 

  

  
Side note: Basically this whole post was an excuse to share pictures of my dogs…because, well, dogs. 

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How Do You Do It: Accepting Compliments

I talk often about how I don’t usually relate to other people with disabilities. Since I’ve started openly saying that, ironically, I’ve met tons of others I totally relate to. It turns out that by putting your truest self out there, you’re much more likely to attract others with similar views. While I always value opinions that differ from mine sometimes it’s nice to have people who just get you.
One of the less-than-popular views I hold is that, as a disabled person, it’s okay to accept compliments without assuming they were given out of pity. So, that bring said, I’d like to offer my fellow crips a how-to guide on handling compliments (even “pity” ones):

1. Smile 

2. Assume its sincere, because you really do kick ass

3. Say “thank you”

4. Carry on with your day

  
That’s it! 4 easy, no-stress steps to accepting compliments without being offended by the kindness of others. 

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. 

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.

sleepnumber
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

helpme_gif

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

airport_rush

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.
american pride
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.

Disability activist
Me being not angry courtesy of Melissa Gebert Photography