Disability Rights are Human Rights

About a month ago, I went to Cracker Barrel for lunch. I parked in a handicapped spot as usual, put up my handicapped placard, got my walker out, and went to enjoy lunch. When I was done with lunch, I came outside only to realize a huge SUV was parked in the access ramp space beside my car and was close enough to my car that my walker couldn’t get between my car and the SUV (and there was no access ramp on the other side of my car). Due to my Cerebral Palsy, lifting my walker above my head to get it out from between the cars was not an option. I also couldn’t collapse my walker and turn it sideways because I needed it for stability. I was, quite literally, stuck. Stuck in a situation that shouldn’t have even happened in the first place. And yet, I knew something similar would happen again, and I was right.

About a week after the incident at Cracker Barrel, my fiancé and I went out to dinner at Applebee’s for date night. We parked in a handicapped spot and he provided me with his arm for stability to help me get inside. Going out to dinner was just what we needed. It had been a while since we had a date night, and we wanted to further treat ourselves after a fun day of shopping. It was a great ending to an already perfect day. We came out of Applebee’s, hand in hand, and when I looked at our car, my smile instantly faded. Beside our car, another car was parked in the access lane, blocking the access ramp, preventing me from getting to the car, much less get inside it. The other car was parked so close to ours that opening the passenger door wouldn’t even be feasible. Infuriated, my fiancé marched inside and spoke to the hostess standing right inside the front door. He explained the issue, pointing outside at the two cars. At that point, a manager was called over, and the story was repeated.

A few minutes later, my fiancé came back outside, followed by a woman in her 60s who seemed extra annoyed to have been interrupted during her dinner. She looked at me, apologized, and simply stated, “I was helping my friend inside. She is in a wheelchair.” That meant nothing to me, not because I don’t support every member of the disability community, but because the woman was parked in an access lane and there was a perfectly free handicapped spot next to her that was not being used, not to mention the fact that where she had parked would have prevented her friend from using the ramp to get up on the sidewalk because the woman’s entire car was blocking access to the ramp. I was so mad, I couldn’t even respond.

And please, hear me out. I understand she was helping her friend. I totally get it. However, she could have helped her friend out of the car, gotten her settled into her wheelchair, and then moved her car to the available handicapped space next to her, or any other free parking space. Instead, she left her car parked illegally in an access lane for the entirety of her dinner outing, preventing another disabled person from using the access lane to safely and comfortably get inside the car.

My point is this: Please don’t park in access lanes. They are there for a reason! And there’s a reason there are blue cross marks through the space…because they are NOT parking spaces! That extended space is there for people who require more space entering or exiting a vehicle because not everyone has the luxury to move with ease. Please consider that the next time you go to park in a handicapped space (if you’re parking there without a handicapped placard or have parked in the access lane). You may be taking away someone else’s ability to enter a restaurant/building/business with ease.

Disability rights are human rights.

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Physical Therapy: Past and Present

I received physical therapy every week of my life until I was 16 years old. So, me and PT have quite a history. And to be honest, it isn’t all that pretty. For me, PT was focused on getting me as independent as possible and as mobile as I could possibly be. That meant learning to walk with a walker, then crutches, and eventually independently. With a physical disability, that’s no easy feat. I didn’t walk in any sense until I was 5 or 6, I think…so I was way behind my peers in that respect. However, that’s where PT came in…to provide me with the tools I needed to reach the same level of functioning as my able-bodied peers. As you can imagine, it was hard work, it was painful, and I left every therapy session having cried at least once (or at least that’s how it felt).

The trauma of physical therapy didn’t surface until I had my first surgery at the age of 11. Following my first surgery, after being in long-leg casts for 8 weeks, physical therapists were ready to get my legs moving. Try keeping your legs board-straight for 8 weeks and then being asked to bend your knees. It’s a level of pain I wouldn’t wish on my worst enemy. One of the three most vivid memories I have is one particular day in physical therapy at Shriner’s Hospital for Children in Greenville, SC, following my first surgery. The physical therapist was determined to get my knees to bend. However, up until this point I had fought her every step of the way. She ended up placing a blue-padded bench right behind my knees in the hopes that gravity would do it’s job over the course of an hour and by the end of therapy, my knees would be bent over the bench. Suffice it to say, gravity didn’t win. I held my legs in the air for 90% of my PT session that day. Eventually, the physical therapist put her hands on my knees and pushed down. Because I had held my legs up for almost an hour, down they went and out came my screams. One minute my legs were in the air, pain-free, and the next…my body went into overdrive trying to process the pain that was splitting me open from inside. I cried and screamed so loud and for so long that I remember a nurse coming in asking if everything was okay. Until that moment, I didn’t understand the concept of a blood-curdling scream…and I also didn’t understand what it meant to feel such an intense pain that when you open your mouth no sound comes out at all. Now I know better.

That PT moment occurred at the age of 11. I am now 25, and I can still go back to that moment in my mind in a matter of seconds….and when I do, the tears come, and I can’t stop. I cry for the pain I felt, the level of fear and anxiety that was coursing through me, and the fact that at the age of 25, I can so easily place myself back in that moment without even blinking. To put it bluntly, physical therapy has essentially traumatized me. It still holds a lot of power over me, I still have nightmares, and I still have really intense reactions towards PT.

A few years ago, my doctor suggested I go back to PT again. “It won’t be like last time. This time, when you say stop, they will.” See, as a child in PT, my voice didn’t matter that much. If I said stop, the pain continued. The physical therapists kept pushing. They had to in order to help me get to the point I needed to be. Therefore, a few years ago, when my doctor said it would be different, I didn’t believe him. Even when the physical therapist said, “You’re an adult. You’re in control now,” I had a very hard time believing her. After only one PT session as an adult, I started having panic attacks. Even though I was in a different place, in my mind I was an 11-year-old girl in the PT room of Shriner’s Hospital. I panicked. I couldn’t breathe, and I felt like I was dying. In short, I had a panic attack.

I have not been back to physical therapy since my previous experience as an adult caused panic attacks. However, I’ve reached a point in my life where I feel like I at least need to try going back. I am utterly terrified and just the thought of it makes my heart race and my breath become rapid. How I’m going to go through with it, I seriously don’t know. But I have to try. I owe myself that much. And I just hope the physical therapist doesn’t negatively respond to my panic attack. I can’t have that happening again.

Send good thoughts over the next few weeks. I need them.

The Mobility Chronicles: CP Edition.

I was driving home from work tonight trying to determine what topic to touch on in today’s post. So much has happened since I was last blogging regularly that it is hard to even know where to begin. At the same time, I know exactly where to start: smack dab in the middle. Because that’s life. It’s not linear. It just happens, and how we handle situations can all be seen in how we respond to them.

To put it bluntly, my mobility has been decreasing over the past few months. But first, let me paint the whole picture. As a child, I utilized canes and walkers and braces on my feet to help me walk. However, for the majority of my life, I have walked unassisted…until now. A few months ago, I noticed I was having some trouble walking, or put more plainly, I was “freezing up.” Here’s the thing. I can walk, but I have fallen so frequently as a result of my CP that it is almost as if my mind keeps that thought at the forefront every time I take a step. You know what they say….don’t think about pink elephants, but what do you do? You think about a pink elephant anyway. Anyway, what I’m trying to say is that I feel like every time I go to take a step, I’m telling myself “don’t fall, don’t fall,” but as soon as that thought process starts, guess what happens? I’m typically on the ground within a few minutes. Therefore, that thought process in itself has made it hard to put one foot in front of the other without some kind of assistance. Even in moments where I think I’m okay, my mind reminds me again, and I can’t get it out of my head. It shouldn’t be a big deal. I fall all the time as a result of my CP. I should be used to it by now, but alas, it’s not really something you get used to, no matter how much it happens.

Coming to the conclusion that I needed something to help me be more mobile and independent was really hard. I fought it for a long time. I’m still fighting it now to be completely honest. But I reached a point where I realized: if I am going to safely get from place to place independently, I need some help (side-note: I hate, HATE asking for help. I need to get better on that). Anyway, a few months ago, I started using a walker (named Hugo because that’s a way better term). It sucks, and I still hate it, but Hugo helps me get from place to place without having to wait for someone to come along and help me get from the side of a building to my car, which was less than 10 feet away. Yes, that scenario really happened. Once I waited as long as an hour for someone to exit a building before I finally just gave in and crawled on my hands and knees to my car. It was insanely humiliating, but I didn’t really have a choice at that point. The longer I stand still, the stiffer I get, and the more difficult it is to move. And you know what? That scenario I mentioned…it didn’t just happen once. It happened at least 5 to 10 times before I realized I needed to figure something out. In case you haven’t guessed, I’m stubborn…and I value my independence more than anything. There’s something you must understand, though. For my entire childhood, the number one goal was walking independently, and I got there. I did it! So now…having to use something to help me get around makes me really mad. I feel like I’m moving backwards, even though I know that’s not the case. I’m 25. I shouldn’t need a freaking walker. And yet, here we are.

While I know Hugo helps me get from place to place, already being at a point where I have to use him sucks. See, I thought I had more time. I didn’t know this was going to hit by the time I was 25. And truthfully, the hardest part is thinking about what other people think. Even though in my mind I know others don’t care, I’m judging myself for it. I’m caring about what I think about the entire situation. And in case you didn’t already catch on to this, I’m really hard on myself. Internally, I keep tearing myself down for having to use Hugo. I feel guilty I think. Guilty I couldn’t have done more to prevent it. And just angry at the image of it. Walking with a walker was not something I ever imagined for myself. I thought I skipped that part. However, I know from experience that ruminating on “What if’s” gets you nowhere. Still…stopping that train of thought is way easier said than done. I’m trying, but I know it’s going to take time.

As of right now, I’m making a conscious decision to allow people to help me more and to actually ask for help when I need it. It’s probably once of the hardest things I’ve had to do. It’s not easy to change thought patterns at the drop of a hat, but I know one thing. I have to start somewhere, and I know my body will thank me someday for giving it the rest it needs. When I’ll start that? Who knows. I’ll let you know when I get there. At this point, I’m just taking it one day a time. That’s all any of us can do.