Handicapped Parking is a Necessity, not a Luxury

That is a phrase I've wanted to scream from the top of my lungs since the day I started using a handicapped placard. Before my spinal cord injury, I was just as oblivious and uneducated as the next person. Quite honestly, I was content being blissfully ignorant about what the handicapped symbol actually stood for and what the term "disability" meant in general. I'm ashamed about it, but don't we all avoid the things that make us uncomfortable? This is a good example of one of those topics. Now that this has actually become my own reality, I've learned first hand what difficulties, struggles, and annoyances those with disabilities face. A lot of the struggles I face are out of my control, but I feel like a few of them are actually something I can change by educating others and bring attention to them. Now, I'm not really sure how many people are actually going to listen to me, of all people, but it's worth a shot, right? So let me enlighten you...

You'd think by saying "handicapped parking is a necessity," that would be all the words that needed to be spoken. But, no, not in today's society. We all think we deserve something and if someone else has it, then everyone should have it. We are entitled to the same "privileges." Trust me, this is NOT a privilege. Matter of fact, whenever there is enough space for me to get in and out of my car, I don't even park in a handicapped spot. Can you believe that? And I actually know a lot of people that do this.

We don't park close because of the distance and so called convenience. We park close because those are the only spots with those dashed lines next to them that allow us to open the door wide enough and throw our chair out of the car so we can assemble it..or let down a ramp from our accessible vehicle. That's what those lines are.

I remember thinking that they were just random lines taking up a perfectly good parking spot...and I wonder how many people think the same. That's why I try to be tolerant of other people's ignorance, but it's flat out hard sometimes. If we don't have those lines next to the side of the vehicle we were exiting and entering, we can't get in or out. Our chair isn't going to fit and we definitely aren't going to be able to open the door wide enough to transfer in/out and then assemble the chair.

If we parked in a regular spot and no one was next to us, allowing us to get out, that would be fine. But what happens when someone does park too close by the time we come back to our vehicle? We can't just get in the other side of our car and climb over. It isn't that easy. And what if we did require a ramp to be let down from our van? There's absolutely no way around that if someone is too close.

You wouldn't believe the number of people who totally disregard those access lines and actually use them as a parking spot. Sounds pretty ridiculous, right? Well, it happens. I was actually in Philadelphia a couple weeks ago and when I got to the parking garage to get into my vehicle, someone was parked in the dashed lines next to me, exactly where I needed to go. Luckily, she was still in her vehicle. I politely (and I mean politely, because I always try to make people feel guilty before I totally unleash all the attitude I have in me) told her I needed to get into the vehicle next to her in my wheelchair. She was kind of rude about it and I just told her "that's a handicapped spot." You'll never guess what her reply was..."I'm handicapped too!" As she pulled away with her window open, I told her "if you were truly handicapped, you would never park on those lines." Seriously though, you just wouldn't. I'm glad I came out of the hotel when I did because I'm pretty sure she was going to park there and then I would have been completely screwed.

And honestly, if you need a handicapped spot for whatever your disability is, you should be considerate enough to leave the spots with the access lane open if there is another space you can pull into. I really feel like there should be some kind of education course on how to appropriately use your handicapped placard, because the ignorance doesn't just extend to the people not affected by a disability or never having to use a handicapped placard. People that have the placard for whatever reason continue to use it, even if they no longer need to. They think "well, it's just this one time" or "I'll be real quick" or "it's raining" or, simply, "I'm old, I deserve this."

Doctors are so lax in how they give these placards out, and the DMV lets it be that way. Last November, my temporary tags ran out and I had to go through the process of getting a more permanent one. I saw the list of reasons for getting a placard on the DMV paperwork that I had to fill out for my doctor and was completely blown away. I'm not trying to be judgmental, and I know there are some good reasons for some of them, but you can get those "prime parking spots" for having a learning disability or being under 4'11". Like I said, there's probably a good reason, but if I don't have one of those access lanes to assemble my chair, I literally can't get out of my vehicle. And I shouldn't avoid doing things in public just because I'm afraid of the parking. It's bad enough that I have to deal with a wheelchair, I shouldn't let ever other aspect of my life be affected by it as well. I shouldn't stop doing the things I love or going places I enjoy.

The dates on these placards are sometimes good for over five years. So if your grandma gets a knee replacement and needs one for a couple months, she may still be using it four years later. Granted, some older people may need to park closer. I'm not doubting that. I know many older folks that park close because if they spent all their energy walking in the parking lot, they wouldn't be able to walk around the store to get what they need. But not everyone is like this. There is NEVER a handicapped spot open at my gym because all the older people park there, then go inside for their water aerobics and to WALK on the track! Figure that one out. The staff actually confronted some of these people about that once and, come to find out, people were just doing it "out of habit," or because it was a family member's tag and they were just used to using those spots when that person was with them. What???

People use the excuse of "I'm just going to be a minute." Well, what if I don't have a minute to wait on you? And especially when it's raining, ugh! You parking close isn't getting you to the front door any faster than me. I have to assemble my chair, transfer out of my car, and then get into the building. And guess what? I can't even hold an umbrella. My hands are busy propelling me to where I need to go, getting wet and muddy in the process, and even if I'm wearing a rain jacket, it isn't going to protect me that much. Unless it's a poncho, my legs still getting wet. And my chair will definitely still get wet, which will affect me for the next however many hours it takes for it to air dry.

People that actually need those handicapped spots would give up that "privilege" in a heartbeat. Ask any one of us. It's not a luxury. It truly is a necessity. We aren't lazy, we certainly aren't saving ourselves any time, and we hate that we have to be labeled as "handicapped."

April 5, 2018- It's not just about me

There have been a lot of topics I've wanted to write posts about, but I've been fortunate enough to see such continual (slow, but continual) progress, that my blog has turned into a platform to update everyone about what is going on, rather than to advocate and bring awareness to the issues I'd like to write about. I have a list of these topics: relationships I've made, the amazing SCI community, traveling with a disability or wheelchair, and the latest-- how to treat a person with a disability and how to teach your children. I'm hoping to touch on all these topics and more at some point, especially with how much positive feedback I've received from my latest blog. This is what I originally envisioned when I started a blog...Granted, I really started it as my "therapy" because I was tired of all the psychologists that kept coming by my hospital room, insisting that I talk about my feelings. I realize how important it is to sort through your feelings after something life changing happens, but I wasn't connecting with any of these doctors, and I really felt like they were pushing themselves on me. I hadn't been home in three months and was getting a lot of messages, questioning what had happened to me and how I was doing...so that's when the idea of a blog started. I wanted to inform everyone what was going on with me, but I started to discover that it really was therapeutic. By writing out everything I accomplished each day, which was a lot, I was able to focus on the positives I was experiencing instead of how much I felt like a rug had been pulled out from under me and left me in a heap on the floor. I say that I accomplished a lot each day, because I literally couldn't even hold my own head up when I got to rehab. If you look back at some of my first posts, I wrote things like "I cut my own sausage patty at breakfast!" and "I got a pair of socks on by myself!" Whenever I get frustrated, I look back at some of those posts to remind myself how far I really have come...it's a little different rereading it and hearing it in my own words instead of hearing other people cheerfully tell me how "blessed" I am and how "inspiring" I am. (I know people mean well, but sometimes I just want to have a pity party...not a long one, but just let me take a dip in the pity pool! I'll get over it and bounce back with even more determination, I promise...but I need to have my weak moments now and then). But also, as time went on, I realized that I was letting people into a world that I didn't even know existed. I was teaching others about spinal cord injuries and this whole new world I hadn't even heard of.

Whenever I finally find time to sit down and write, it turns into a "catch up" session, talking about therapy and updates about school, instead of the other things I've become so passionate about. ADA laws and accessibility have become two things I care so deeply about, and it's not just because it pertains to me. I can't believe I've studied science, almost completed graduate school, and worked in healthcare for ten plus years and I've never heard the term "spinal cord injury." I've never heard much about quadriplegia, paraplegia, and definitely not the words "autonomic dysreflexia" (I'll go into specifics on what that means at a later time). And you know what's scary? Not many nurses, doctors, or ER staff have much knowledge on these topics either!

I've learned so much on this journey that I've decided I'm going to get my Masters in Public Health once I finish my Doctorate in Optometry. I learn something new about accessibility and disabilities every single day and it has made me even more aware of how absolutely clueless our society is. I've already done some advocacy stuff on capitol hill because that is what optometry is all about. It differs from state to state based on what the optometrists in that state have lobbied for the rights to do. For example, doctors in Massachusetts couldn't prescribe glaucoma medications until more recent years...they could diagnose it, but then patients had to see an ophthalmologist (who went to medical school instead of optometry school) to get the eye drops. So, I've seen what it's like to fight for what you want and to advocate for different laws..and while I'm passionate about my future career (I mean, it's what I've wanted to do since the THIRD grade), my heart is even more dedicated to fighting for everything ADA laws encompass. I've seen and experienced it first hand, and I really don't think it's asking too much to have a bathroom stall that everyone can use in local businesses...to have more than two accessible rooms in a hotel that has HUNDREDS...to have a smooth curb cut to get into different stores and on/off the sidewalk. I wanted to be an eye doctor because it was something I could relate to. I've had glasses since the third grade and I distinctly remember the feeling I had when I went outside and could see the leaves on the trees for the first time. (I also toyed with the idea of being an orthodontist for the simple reason that I had braces for  seven years, but I'm glad that didn't stick with me for long!) I think when someone has a personal connection with what they're doing, they accomplish more..they actually know what they are talking about and can get people to listen to them, not to mention how much more motivated they are to succeed. I'd like to think that I would've been an advocate for disabilities even if this didn't happen to me, because it just seems right. But I also think that I will accomplish more having first hand experiences. I'm excited to bring awareness to these issues, because I think half the battle is that people really just don't know. We, as a society, aren't educated. And unless it personally affects us, we don't even really care to be..

How do you treat a person with a disability? How do you teach your children?

I was having a conversation with some of my therapists this morning while walking in the pool and I just felt like I needed to write about it and share...

I always enjoy being in the pool with Rachel, because you can count on her to have at least one entertaining story about her kids. Today, it started with the story of raising a frog. Trust me, these stories are as amusing as they sound (and sometimes we start laughing and get so carried away that we forget what we're doing.) The frog story is definitely not the conversation I wanted to write about, but I feel like I just need to share it and hopefully make people laugh before I get into something a little heavier. Anyways, Rachel has gotten the kids things like butterfly kits in the past so they could watch the life cycle, learn about raising an animal, etc. Well, her sister bought them this "life of a frog" kit, thinking it would be another experience like the butterflies, but maybe a little more advanced. Well, it was a LOT more advanced, with a 30 page instruction manual enclosed. Rachel said she started reading this kit and saw that the average lifespan of these frogs is anywhere from 5-15 years! and they aren't water frogs, which totally ruined her plan of releasing it into the pond behind their house, haha.

I love these stories not just because they're hilarious, but also because I love hearing about Rachel's interactions with her kids and her parenting skills (which I think are amazing, by the way). This morning, she was on a kick about how children should interact with people that have disabilities and how their parents should teach them to interact with those people. She really started thinking about this because her middle child, the five year old, saw an adult that was their size for the first time and blurted something about that person out loud...now, being a five year old, I think he was just excited that an adult was closer to his height, but nonetheless, it wasn't appropriate to say something out loud like he did. Instead of ignoring what happened, or waiting until later to bring it up, Rachel brought her son right over to the woman, had introductions and said how her son wanted to meet her and that she was sorry for interrupting their dinner. I'm not really sure how I would have handled it, but I liked her point about not just ignoring what your child does and to deal with it in the moment. What are we teaching children if we ignore certain things or simply "let things go" ? Don't you think they'll carry that with them in life and use those tactics to handle other situations in life?

This brought us into a whole conversation about how children interact with people in wheelchairs. Children are innocently curious about wheelchairs. I can't even tell you how many I've had go past me and get really close, just to try to touch the wheel. And whenever a child asks their parent "why is she in that chair" or something along those lines, if my mom is with me, she'll lean over and say "you can ask her." And it starts a conversation. And I think the kids become more comfortable. Now, this is a lot different than some of the other interactions I've had with adults (who should know better!!) So, I took that opportunity to tell them about some of the things people have said to me..(and I'll fill you in, as well)..

-"Aw, were you in an accident?" Um, first of all, that's kind of personal to ask a stranger that you've never seen or talked to before. And what if I was in an accident? Do you know how many people I've met that have an SCI from a traumatic car accident? A lot! And many of those people need to have therapy to deal with the PTSD that comes from something so tragic. How do you think those people feel when a stranger asks them about their accident?
-"How long are you going to be in that wheelchair?" I guess this doesn't bother me as much as most people (although it definitely still  does to some extent!) because I'm still continually seeing progress, but how awful of a question is that to ask someone who may not get out of their wheelchair? And shame on you for thinking they should! For so many people, it just becomes part of who they are...like having brown hair or blue eyes. Why does getting out of their wheelchair and walking have to be an issue?
-"Has the doctor given you a date for when you're going to start walking?" Is that even a serious question?? "Yeah, on May 25, the doctor said I'll wake up and be able to get out of bed and go for a run." (This really happened).
-"So and so is in a wheelchair, do you know them?" well...I know this person who walks, do you know them?
-A 350lb man came up to me on his motorized scooter and said "as you can see, we have a lot in common," as he proceeded to tell me about his osteoarthritis and how the doctor said if he just lost 150lb, he'd have a much easier time getting around... which leads me to the next thing I get pretty often: "I was in a wheelchair for a little bit after my surgery (for ___) and I hated it!! I don't know how you do it...how long do you have to use it?" ...really?
-the woman at church that greeted me by saying "well look at you there in that wheelchair.." I understand people just say what comes to their mind, but that was honestly enough to make me not want to go back...

The list goes on and on...

But Rachel asked me what would be appropriate for her kids to ask.. What should she teach them? And I thought that was an amazing way to parent. Like, what is okay to say and what isn't? I mean, for the most part, kids are kids, and you have to remember that they are just curious and really don't know any better. I told her to just let them treat the person with a disability like anyone else, I really don't think people are going to be upset about a child being curious. Now, if you teach your child to just sit back and stare (like their parents usually do), that's a different story. I think most people would rather have the child ask about the wheelchair. When kids do that I usually reply with "I got sick and my legs are getting stronger." That's enough of an answer for them, which is much different from most adults. Kids are satisfied with that answer and just move onto talking about something else, like the wheelchair no longer exists now that it was addressed. Why can't everyone be like that? I really feel like if we teach this to children while they're young, maybe our perception of disabilities will change in society. Maybe we will no longer look at someone in a wheelchair, someone using a walker, someone with a cain, as if something is wrong with them, but start seeing it as just another way they get around...or even as another character trait, like the color of their hair.

Here are a couple videos I've found somewhat amusing, but also so true. Maybe people can get more of a look into what it's like in the day of a wheelchair users and the ignorance we have to deal with...

https://www.youtube.com/watch?v=M0jrmmqBBZ8

https://www.buzzfeed.com/tallalex/the-10-most-stupid-things-you-should-never-say-to-icll?utm_term=.uhP6lNvJWx#.rwYaBo1eVw

April 2, 2017

Ever since inpatient rehab, I have been known to set goals and achieve them in a very short time frame. It started with my first goal of wanting to be able to scratch my own nose. The medications I was on made my nose so itchy and I wasn't able to lift my own arm up or even speak in order to let anyone know what I needed...I was always making whatever nose I could manage to come out of my mouth in order to get someone's attention, and then find myself wiggling my nose (like the actress in "Bewitched") to signal how itchy it was. I set the goal of being able to do this by myself on my first day at Magee. I achieved that goal before the end of the week. Most of my inpatient rehab continued this way. I guess it's understandable because I literally couldn't move anything when I arrived. It was easy to achieve small goals because any improvement was progress...and when you have nothing, anything you do seems like a huge accomplishment. My goals continued- feeding myself, putting my  contacts in, getting my hair into a ponytail, etc. It also became a joke that anytime my therapists got a hold of the adaptive equipment I needed in order to make a specific task easier, I didn't need it anymore. Like the effort they went through to install a sling-like device on my chair that would help keep my arm elevated so that I could feed myself. We got it set up and I never had to use it...not even once. We'd say "let's install this piece of equipment just so you won't need it anymore."

Now that I've made a lot of progress, my goals have become much harder to achieve. My current goals consist of: 

-being able to take apart, load, and then unload my chair from the car by myself (this takes a lot of problem solving, like how to position the seat, how to hold my chair, what to load first; not to mention how much core strength it takes!)

-standing independently in the parallel bars for a longer length of time (I no longer require someone breaking their fingers while holding the harness around my hips, but again, this takes a LOT of core strength)

-"sit- to- stands" from 21 inches. I've achieved this goal from 24 inches, but my chair height is 21, so I'd like to be able to stand from that height with a walker. If I could do this, I'd be able to practice at home and continue to improve.

-uneven transfers. Going from a high surface to a lower surface is easy, you've got gravity on your side. Doing the opposite is another story. I've become a lot more independent and like to get on and off the couch or into different chairs (not to mention when I use public bathrooms on my own and the toilet is something crazy like 14 inches!) I've asked my therapists to help me with this because it only helps me be more independent and more comfortable getting out of my chair in public..it's nice to sit in the booth with my friends when we go out to dinner and not have to stay in my chair...it's a small thing, but it's one more step towards feeling "normal." 

I achieved one of my goals this week and got to cross it off my list..and that goal was to be able to use the Eskoskeleton in therapy. It took me a whole YEAR to achieve this, which is the longest I've had a goal during this whole journey (well, besides being able to walk again). I have lost 20lbs (probably even more, since I haven't weighed myself in a couple weeks and I know how much looser my clothes are fitting) and over two inches off my hips. Of course there are less women using this device because of the hip width requirement (men have it so much easier, right?!) I've waited so long to do this in therapy and I was actually a little worried I wouldn't like it, like all that time I had it in my head that this was going to be the greatest thing, and then it would be nothing like I had imagined for so long. Luckily, that didn't happen. I loved it! I got in without a problem and spent the whole hour kind of get used to what I'm supposed to do. The machine was sensing my weight shifts, and then taking the step for me. As I get better and better, the therapist can make the settings more difficult and make it so that I'm doing more work and the machine is doing less. It felt kind of robotic, but at the same time, it was the most natural piece of gait training equipment I've used...and I've used a lot! I think the plan is to do this for an hour each week and I already can't wait until this Wednesday.