Healthcare Access & Disability

Access to good quality, disability-inclusive healthcare is a hot topic these days in the disability community, and for good reason. It’s hard to find. A lot harder than you think. Why? Well, a multitude of reasons, honestly. In my opinion, it boils down to a lack of adequate disability awareness training in medical school, a lack of medical professionals WITH a disability to represent the community (I have seen a FEW, which is awesome, but still not enough), and a lack of formal training on the “culture” of living with a disability (such as pointing out barriers people with disabilities face when trying to find adequate healthcare, education, employment, housing, and transportation).

Personally, I think the two biggest reasons disability-inclusive healthcare is so hard to find is due to the lack of disability awareness training in medical school and the lack of understanding of disability as a “culture” and “community.” For me, “disability culture” is simply my perspective of living with a disability. While these perspectives can vary widely depending on the type of disability and your comfort level with identifying yourself as a member of the disability community, the way you express yourself within the context of disability culture is just that: an expression of your own unique experiences. However, with that said, there are some commonalities as well, such as the history of disability, the social aspects living with a disability, and the tendency to view disability just in terms of access.

When I say disability access in terms of healthcare, I don’t just mean physical access. While physical access is indeed important, the societal barrier of accessing quality, disability-inclusive healthcare holds even more weight in my opinion. For instance, when I was a junior in college, I started going to a physiatrist  to have someone monitor my Cerebral Palsy as an adult. Physiatry is a branch of medicine that aims to enhance and restore functional ability and quality of life to those with disabilities. You would think a doctor in this specialty of medicine would be incredibly in tune with the needs of the disability population and would have a deep understanding of disability culture. You would be wrong (in this instance, at least).

The physiatrist I saw understood disability in terms of the medical model. The medical model of disability says people are disabled by their impairments or differences. Under the medical model, these impairments or differences should be ‘fixed’ or changed by medical and other treatments, even when the impairment or difference does not cause pain or illness. How should have this physiatrist altered their perspective of disability, you ask? He should have attempted to view and understand disability from a medical AND social context.

The social model of disability says that disability is caused by the way society is organized, rather than by a person’s impairment or difference. It looks at ways of removing barriers that restrict life choices for disabled people. When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives. In short, the social model of disability focuses on empowerment and inclusion.

To be honest, I fall somewhere in the middle of those two models. For instance, I believe that societal perceptions of disability and disability stigma and stereotypes are the biggest barriers people with disabilities face. That being said, I very much understand the biology behind Cerebral Palsy and know that my CP wasn’t “caused” by societal perceptions. It was caused by the fact that I was born three months premature and didn’t receive enough oxygen to my brain when I was born. However, I do feel that societal perceptions of disability have further exacerbated the difficulties people with disabilities face. They definitely haven’t made them any easier, that’s for sure.

I think so much of the time when people think of barriers for people with disabilities, the first thought is physical access. I hope that as the disability community grows and as I continue to speak out on issues that greatly impact my life, others will see that it’s SO much deeper than just the fact that I was born with a disability. Yes, that’s true. But the reason it can feel almost impossible to live with a disability some days is not because of the disability itself. It’s stereotypes. It’s stigma. It’s a lack of understanding.

I know bringing up disability is “uncomfortable” for a lot of people because they don’t want to potentially offend someone. However, please know, your inability to bring disability into normal every day conversation is a major part of the problem. Talk about it. Ask me about it. I won’t be offended. I’ll gladly paint a picture of what it’s like to live my life. And I’ll be honored that you cared enough to ask.

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My Journey Through The Blogosphere

I first started blogging in 2011 when I was a sophomore in college. At that time, I didn’t know what I was doing. I just wrote whatever came to me. This included life as a college student, music, books, travel, and eventually, my disability. There are days when I miss that blog, lifeintheblueridges. I miss the freedom of it, the peace of mind. I made connections with hundreds of people, some of which I still have today (I’m talking to you, Arianna and Cassie, if you’re reading this). I miss the level of connection and community I felt within the blogosphere. And for those of you who have stuck with me since the beginning, thank you. I am grateful, honored, and no amount of words could convey just how much you mean to me. My first blog felt like home, but over time, as I graduated from college and moved on to graduate school, my blog was no longer at the forefront of my life. At the time, I didn’t give it much thought. But now, thinking back, I regret not making it a priority. I get that life comes first and it’s okay that I put my career first, but writing should have been in the running for first place too. It’s always been my haven, my safe place, and the one place I felt 100% myself, but then I stripped it away without even really thinking about what I was walking away from.

When I graduated from college, I created this blog. I had read somewhere that finding a niche in the blogging community could increase traffic to your blog. So I did that for a while. I no longer wrote daily. It was a tiny accomplishment if I managed to write even one post every few months. I primarily wrote disability-related posts. And while some of the posts were incredibly cathartic, I didn’t feel the same level of community and connection I used to when I first became a part of this community back in 2011. I felt like I was writing for other people, rather than myself. And I know from experience what a tricky path that is to go down. It puts you at risk for losing yourself, and I think that’s what may have happened with me over time.

I don’t know if the blogging community has changed or I have. Honestly, it’s probably been a mixture of both. I know one thing, though. I miss it. I miss coming to an empty page daily and just writing whatever came to me as I did when I first started blogging. Sometimes, that was just a music video or a quote from a book I was reading, but it was me. It was authentic. My writing ebbed and flowed with my moods, the seasons, and life in general. Back then, I didn’t just post when I felt like I had something to say. I posted even on the days where I felt like I was trudging through mud and had no idea where to even start. I wrote anyway.

More than anything, I wrote for me. I wrote what I was feeling and what was in my heart. I didn’t have moments as I do now where I think, “What are other people going to think of this?” and “What kind of lesson or story am I trying to get across with today’s post?” Though there is nothing wrong with posing those questions before sitting down in front of the blank page, in my experience, it’s limiting. It put me in a box. A box that initially was comforting. However, eventually, I just couldn’t do it. I’m realizing now that those limitations kept me closed off from the community I so badly wanted to immerse myself in.

So, today, as my friend Arianna would say, I’m making the choice to show up. I’m pushing away thoughts of “Will others like this?” or “Will this post drive traffic to my blog?” As I’m learning, those questions don’t matter. Writing is what I love. I first started blogging solely for that reason. And I think it’s common to drift away from reasons you may have started on a journey in the first place. It was never about others. It was about me, writing from my heart, and feeling grateful when others connected with my words.

So even though I don’t know where my blog will go from here, I know one thing. It will be 100% authentically me. If we can’t be authentic and 100% ourselves, what’s the point, anyway?

Why Asking For Help As A Disabled Person Was The Best Gift I Ever Gave Myself

As much as I put on a “brave face” and strive to have a positive attitude on days when my CP has me doubled over in pain, there is a lot of internal frustration that comes with living with a disability. Typically, my blog has been a place to vent those frustrations. But I’d be wrong if those difficult days were the only memorable ones. Does my disability frustrate me? Absolutely. Are there days where I wish I wasn’t in constant pain? You bet. But at the end of the day, I wouldn’t trade my disability for anything. I really wouldn’t. It’s given me a perspective on life and allowed me to cross paths with some of the most special people I’ve ever known, and without my disability, I don’t know if my life would have unfolded in the same way. A blessing in disguise, I guess.

Typically, “good” days aren’t memorable. They are simply a small break, even if only for a few minutes, of the physical and emotional pain I feel as a result of being a member of the largest minority in the world. However, a few weeks ago, I had a “good day,” in a sense, and it’s one I’ll never forget.

I was going to Subway to get lunch and looking forward to having an entire hour to myself (yay introversion!). I took my walker inside, as it is my preferred method of mobility these days when I’m by myself because it prevents falls. However, when I got to the door, I realized my conundrum. I couldn’t get the door open and maintain my balance at the same time. However, thankfully, as I was attempting to open the door, someone inside saw my struggle and came to assist (thank you, kind human). I said thank you profusely, and when the gentleman just smiled broadly and nodded, I realized just how much people long to help others. Typically, it’s difficult for me to accept help as I feel like a burden, but I have to realize that typically people don’t offer to help unless they are genuine and truly do want to assist you in some way. That realization really came to fruition once I was done with my lunch, but I’m getting ahead of myself.

I stood in line to put in my lunch order, which for the first time wasn’t a big deal because my walker has an attached seat so I can sit whenever I need (best invention ever!). Anyway, I enjoyed my solo lunch, counting myself lucky to have received so much positive support from others during this difficult transition regarding my mobility. I then got up to leave, pondering in my head how I was going to exit Subway without possibly falling over or calling even more attention to myself. It was in this moment that I knew the best course of action was asking for help, so when I eyed a group of EMTs eating lunch, I asked for assistance. One guy was so excited to help he practically bounced out of his seat mid-bite to assist me, replying “Of course!” with the most genuine smile I’ve ever seen. I thought I was going to fall over (ha!) from happiness.

I thanked him over and over for his generosity, happy to know there were still kind people in the world, but that wasn’t even the best part. A few minutes later, I got to my car, opened the truck, and went to place my walker in the back like I’ve done hundreds of times without incident. However, this time I lost my balance, and because my hand was still on my walker as I was falling, my walker fell on top of me. Don’t worry, I’m fine. But it sucked. I felt embarrassed (as usual) and just aggravated at my body for not cooperating.

After a sigh of relief and a reminder to myself that the choice is to either remain on the ground or get back up, I rose to my feet. Once I was standing and started to close the truck of my car, I looked up to see the EMT from before sprinting out of the Subway. In my head, it felt like watching Baywatch, standing in awe as an attractive, shirtless man ran towards you to save the day (but he was only shirtless in my head, haha). He came up to me and said, “From the way you got up, I can tell this happens often, but is there anything I could do to help?” As much as I wanted to say no, the kindness in his eyes made me want to hug him. I didn’t hug him (which was the wrong choice because he was attractive, muscular, and looked like he could throw me over his shoulder with just a finger). However, I did take him up on his offer to help. I said, “You know what would be really great? If you could walk me to the front door of my car and help me get in safely.” The “of course” couldn’t come out of his mouth fast enough. Once seated safely, I looked up at him and said “To be totally honest, it is really hard for me to ask for help, but I’m so glad I did today.” He nodded, double-checked to make sure I was okay, and softly closed my car door.

I waited until he was back inside to cry the happy tears I couldn’t hold back anymore.

The Words of My Childhood

A few weeks ago, my mom brought by two boxes of childhood memories that I knew I couldn’t part with, though initially I didn’t even remember what was in the boxes. As I took a nostalgic trip down memory lane one evening, I found diaries starting from when I was really young, stuffed animals I could never part with, and best of all, stories and poems penned by yours truly. Interestingly enough, as I poured through everything I had written (at least those of which I kept), I noticed some distinctions within the words.

Within writing, there is the concept of “finding one’s voice” as a writer. I used to believe I was still searching for mine, not knowing when it would be fully developed or when I’d know I had one worth remembering. However, the authenticity of my “voice” as a writer, especially once I was high school, brought tears to my eyes. For instance, I was looking through Academe, a literary publication my all-girls’ school published during my junior year of high school. I was mindlessly flipping through the pages, stopping at prose or poetry that caught my eye or pulled at my heart. I read a poem called “The Barn,” devouring it, literally hanging on every word, and wondering the whole time who had written the poem. It wasn’t until I reached the bottom of the page…that I realized the author was me.

“The Barn”

I am a lost soul

On the search of self discovery

Looking in every nook

Every cozy log cabin

Finally stumbling upon

An old abandoned barn

 

Its windows are shattered

Showing the whole inside

Much like a heart

Left for the world to tear apart

It is overflowing with hay bales

Resembling each happiness

Each piece of simplicity in life

But leaving gaps

Just big enough for grey skies to surface

 

There are camping lamps in each corner

Shining light upon this life

And guiding the way

But sometimes burning out

To force me to find my way

In complete darkness

Dead silence

And hazy fog.

© Trailblazing 2018. Unauthorized use and/or duplication of this material from TrailblazingWithCP is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Trailblazing with appropriate and specific link to the original content.

As you can likely deduce from this poem, I’m definitely an “old soul.” I wrote “The Barn” 9 years ago, at the age of 16. By that point, due to all the physical and metaphorical obstacles I had to traverse as a result of my disability, I felt like I had enough life experience to last decades. What I didn’t realize until I read this poem as a 25-year old adult is that I have always had a “voice” as a writer. Over the years, I have refined it, strengthened it, and molded it into the essence of who I am today. Even as a child, the foundation of my voice was there, sitting in the dark, patiently waiting on my words to bring it to life. Maybe I never had to “find” it after all. Maybe it was there all along, waiting for me to be ready to come looking for the piece of myself that would allow all the others to fall into place.

 

The Reality of PTSD as a Result of My Disability

*This post was originally posted on my first blog. I felt like it was applicable to the fear and anxiety I still have related to my past. I’m working through it of course, but change doesn’t happen overnight. It’s just one day at a time.

For as long as I can remember, I’ve always been a nervous person. Along with those nerves, I was also very scared, especially as a kid. Rather than using the word “fears,” I was simply told by my parents and my doctors that I had a “vivid imagination.”

Because of this vivid imagination, I remember one specific time when I was 12 and my parents waited a while before they told me about a specific scheduled surgery. I understand now that they didn’t want to alert me to it too far in advance because they knew I’d essentially be a nervous wreck right up until I had to go in for surgery. Though I can understand this now and I know it was a protective measure, I didn’t see it that way when it happened. I remember the night my parents sat me down to tell me about a surgery that would be occurring in about a month. I couldn’t exactly comprehend at first that my parents had waited to tell me, but once I did I immediately started to worry. Not long after that moment, the dreams I would always have leading up to a big operation started. The most common, of course, was the dream in which I woke up during surgery.

Due to my “vivid imagination,” my dreams were exceptionally vivid. In my dream, I was lying on the operating table. My eyes were open, and I was seeing everything. The doctors had the femur of my left leg in their hands, and they were twisting it to the left in order to straighten it out. Though I couldn’t feel any pain in the dream, I could imagine it, which was almost as bad. I looked at the doctor’s gloves, which were covered in blood, my blood. In a room as white as the operating room, the red seemed out of place. And yet, there it was. On the doctor’s hands was the blood that ran through my very veins. As I watched the doctors attempt to “fix” what was “not normal,” I tried to scream out. My mouth opened to make any kind of sound, but nothing happened. I tried to move. I focused so hard on trying to simply raise my right hand off the table, but it was too heavy. The doctors had to know I was awake. If they knew, they’d stop. If they knew, it would all be over. I just needed to do something to get their attention, but they were so focused on my legs. They didn’t even glance up towards my face, not even once, to see the fear and the anguish that was mirrored in my eyes. I wanted nothing more than to get as far away from that room as possible. I wanted to get away from the dead quiet that enveloped me like a blanket that was too heavy, practically suffocating me. The moment I closed my eyes to escape the horror I was seeing, I woke up.

When I woke up from this dream, I felt like I could barely breathe. Without even giving it a second thought, I yanked back the covers to look at my legs. I touched them to make sure they were still intact, still closed up tight. I looked on my legs, my hands, and my sheets for the blood. The blood that had been so incredibly red, so out of place in that white room. With my sweaty palms resting on my knees, my emotions took over. I cried out, knowing that tears couldn’t do this type of fear justice. I rocked back and forth, holding the stuffed teddy bear that was tucked into the bed beside me, and knowing as I started to shake that the tears were coming. When my body finally allowed me to cry, I curled up on my side, hugging the stuffed teddy bear to my chest like a shield, and let my tears speak for me. After the immediate emotion passed and I was curled up into the tightest ball I could form, I began to hum. I hummed the lullaby that my dad so often sung to me when he’d rock me in his mother’s rocking chair on the nights I couldn’t sleep. Eventually, sleep tugged at me again, and I opened my eyes for a pleading moment as I looked into the darkness, knowing the dream was waiting for me.

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 Road to Acceptance

In the world of disability, there is a term known as “acceptance,” as in….acceptance of your disability and all that it means for you. I’m going to be honest. I’m 25, and I’ve had Cerebral Palsy since birth, but there are still plenty of days where I get just plain frustrated with my CP. Typically, most of my frustrations are aimed at the outside world and the lack of understanding of disabilities (physical and mental) in general. Yes, there are a lot of positive changes for the disability community, like the Americans with Disabilities Act and the Individuals with Disabilities Education Act. However, there is much more work to be done, and we can’t stop here. No matter how positive your outlook, 100% overcoming societal stigma experienced by being a member of the largest minority in the world is close to impossible (at least in my opinion), and for me, that is the hardest thing about being disabled. Living my day-to-day life with CP is a walk in the park compared to societal stigmas and societal responses to having a disability. I don’t know how many times I’ve gotten pissed because someone has parked in a handicapped spot without a handicapped placard or someone has parked in the access lane next to a handicapped spot and/or parked in front of an access ramp because they are “just waiting on someone and they’ll only be a few minutes.” Because, news flash, those spots and accommodations are there for those that need them. Just be respectful and realize that.

It’s safe to say I haven’t reached the point where I’ve fully accepted my disability. However, I’m doing much, much better with it now than even just a few years ago. I’ve gotten more comfortable expressing my needs and asking for help when I need it. I’ve started to better understand the reality of getting older with my disability as opposed to still thinking I can do the things I did even 5 years ago. I’ve settled in, in a sense. For some, that may look like giving up. But trust me, I’m far from it. I’m way too much of a fighter to stop trying to have the most fulfilling life possible. Trust me, those who know me know that “giving up” does not even exist in my vocabulary. Yes, being disabled is just a piece of who I am, but from my standpoint, it’s a pretty big piece simply due to how much it impacts me on a daily basis.

Best of all, I’ve reached a point where I actually want to utilize my experiences of living with CP to connect with and help others. That used to not be the case. I used to want to get as far away from my disability as I could. Simply put, I was in denial, and I was in a space where I just felt like I couldn’t process all the emotions that come with living with a disability. Day by day, I’m processing through those emotions. And best of all, processing all those feelings is best done for me through writing. I have a feeling that’s partly because not only do I love to write, but I am hopeful that my words will connect with someone else, even if only in a small way.

So, have I fully accepted my disability? Likely not. And why do you ask? Because there is always, always more work to be done on ourselves and more thoughts, emotions, and situations to sift through. I’m content with that, though. As long as I’m processing through things and changing, I’m growing and ultimately becoming the person I’m meant to be. And for me, there’s nothing better.