Getting Married as Someone with a Disability

Today marks two weeks since I married the love of my life. I’m still catching myself saying my maiden name as opposed to my new last name, I still haven’t written thank-you notes, and there are wedding gifts still in their original packaging. But as I sit and reflect on my wedding day, I feel nothing but love and gratitude for the friends and family who helped to make it the best day of my life.

Like many girls, I spent my life thinking about what my perfect wedding day would be like. However, unlike most girls, my focus wasn’t on the details like the color scheme, flowers, table decorations, or the seating chart. I cared about one thing: the man who’d be standing opposite me as we promised to spend forever together.

As someone with a disability, I spent years wondering if I’d ever get married or even have a boyfriend. I didn’t know if I’d ever find someone who wouldn’t feel burdened by my disability. I couldn’t picture someone wanting to spend their life with someone who did not know what the future would hold for them physically and the level of help they’d need. I couldn’t picture someone not being frustrated by the intricacies of being intimate with me. I couldn’t imagine someone CHOOSING that kind of life and future for themselves.

Then I met my husband, and my whole world shifted. Together we learned how to navigate a relationship where one partner is able-bodied and the other is not. However, don’t get me wrong, that wasn’t necessarily a walk in the park. It took time, understanding, communication, and trust, and most of all, patience. But tackling those challenges early on meant we built our relationship on honest, open communication. And our relationship only grew stronger from there.

If you asked me as a child to picture the man standing opposite me on my wedding day, I wouldn’t have pictured my husband, but here’s why. I honestly didn’t think someone like him existed. I didn’t believe I’d find someone to love me AND my disability, while also being willing to take on the responsibilities that only a relationship like ours requires. But then the universe proved me wrong. And here we are, enjoying the early days of married life and brimming with excitement for what our future together holds.

So, to all the people out there with disabilities wondering whether they’ll get married one day, please know, it’s possible. I’m living proof. We are worthy of love, acceptance, and romantic relationships, so don’t let anyone say we’re not. Honestly, I think relationships with one disabled partner are even stronger than relationships where both partners are able-bodied. Because not only do we have to navigate the typical ups and downs of a relationship, we have to come to terms with the physical aspects too, and that makes our partnership even stronger.

In that sense, I am so grateful to have found a man who encourages my independence but also helps me when I need it. And that help isn’t tinged with feelings of resentment or being a burden; it’s filled with love. I know this because I know my husband, and the love we have for one another is visible. I saw it plain as day on our wedding day. I saw it in the look in his eyes when we promised forever to each other surrounded by our friends and family. I heard it in the words of the hand-written vows he wrote. And I felt it in the way he held me during our first dance. And I see it today, just in the way we navigate our day-to-day lives, allowing each other to grow as individuals and together as a couple. And in the conscious decision we make to choose to love each other, every day, over and over, from now until forever.

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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.

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 Mobility Chronicles: CP Edition [Part 2]

Back in January, I wrote a blog post and opened the door of my current mobility struggles, while simultaneously opening the floodgates of all the emotions associated with my declining mobility. In some ways, it feels like the level of those emotions has increased, but honestly, I think they are fears and concerns I’ve had my whole life, so now that they’ve come to light, it feels like I can’t even breathe some days because of my level of panic, anxiety, and unrelenting anger.

In between the time I wrote the initial post on this subject, I’ve gone back to physical therapy, which was a huge step for me. Past physical therapy experiences have resulted in a form of PTSD, so the fact that I was even able to walk in the building when I had my first appointment was a really big deal. I’ve only had two appointments with my new physical therapist, but so far, so good. During my initial appointment when I was evaluated, I spent 90% of the appointment discussing my past PT experiences, the panic and anxiety I now feel as a result of my past and the pain I experienced, as well as the experience I had when I returned to physical therapy 3 or 4 years ago for the first time since I was 16. To put it bluntly, returning to PT that time around didn’t go well. I had no idea I was going to have panic attacks, but I did, and they scared the crap out of me. Therefore, when I returned to physical therapy this time around, I knew what to expect in a sense. I was utterly terrified and it took a lot for me to even think about going, but I had a better idea of what my response would be.

Therefore, about a month before my initial evaluation appointment, I talked with my psychiatrist about my concerns, in the hopes that she could prescribe me with something that could at least take the edge off so I could walk in the door of the physical therapy clinic without having a panic attack. The fact that I even had to ask for a medication to help me made me feel weak. However, I have battled my depression and anxiety and been in mental health therapy long enough to know that sometimes talk therapy itself can’t 100% fix a problem, especially when it’s literally a chemical imbalance in your brain. Don’t get me wrong though. I’m not one of those people who thinks the entire country should be medicated. However, all I know is that for me, the combination of talk therapy and medication has allowed me to be a functioning member of society without feeling completely debilitated by my anxiety and depression.

Anyway, upon returning to physical therapy, knowing I had something that could help me from totally going into a panic attack and not being able to get through the appointment was a relief. It was like knowing I had a safety net if I needed it. I will say, though, another huge part of returning was getting myself mentally prepared that physical therapy this time around would not be the same as physical therapy when I was 11 or 12 that required intense physical therapy post-surgery. For me, that meant creating mantras in my head, like “You are in control,” “If it hurts, you can’t tell them to stop,” and “If you have to get up and walk out, that’s okay.” In short, the mantras help, but so far it has meant repeating them in my head over and over for the entire hour of my appointment.

In short, each PT appointment forces me to face internal demons that I’ve been battling since childhood, and that shit is hard. I remember the day a few weeks ago when I went to my first appointment. I got through it, but for the rest of the day, I was in a very thick mental fog. I had built the appointment up in my head, expecting a continuous panic attack. Since that didn’t happen, my mind had to adjust to the fact that what I was preparing myself for for over a month wasn’t as intense as I was expecting. Despite that, facing these fears head on on a daily basis is exhausting. I’m sure that over time it’ll get easier, but for now, it just sucks. It doesn’t feel fair. I shouldn’t have to have such an intense internal battle with myself on a daily basis, and yet, here we are.

Recently, I discussed my anger surrounding my declining mobility and having to use a walker with my mental therapist. In short, I’m infuriated with myself and my body constantly. I hate that my mobility has reached this point. I’m pissed that I didn’t do more to hold off this moment for as long as I could. It literally makes me want to scream and cry, simultaneously, on a daily basis. It’s not fair. I shouldn’t have to deal with this now. I thought I had 10 more good years of independent mobility without having to depend on the assistance of a mobility aid. But the universe had other plans.

To be honest, facing my declining mobility as a result of my disability feels like the hardest thing I have ever had to do. The simple fact of feeling like I am being continuously “mentally tested” on a daily basis is enough for even the most mentally strong individuals to take pause. So, today, I’m taking pause. I’ll pick up the fight again tomorrow.

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.

What Blogging Means to Me as Someone with a Disability

Writing has always been a comfortable outlet for me. Maybe because I feel more true to myself when I write than when I try to vocalize my emotions or connect with people in-person. As a child, books and words meant safety. As a got older and experienced numerous surgeries related to my Cerebral Palsy, writing was once again the outlet I immediately went to because I felt like no one would understand the stream of consciousness going through my anxious, but inquisitive mind. I didn’t have my first surgery until I was 11, but I have this clear image in my mind of sitting on the brown couch in the den of my childhood home after my first surgery with a yellow legal pad on my lap and a pen in hand. I may have had both of my legs in bright blue casts with a yellow bar in the middle, making it difficult to move, but I didn’t let that stop me from doing the one activity that has always set my soul on fire.

Even then, I wrote stories about myself. The story of waking up in the ICU after surgery. The story of experiencing Christmas from inside the four walls of a hospital. The story of weekly visits from therapy dogs. The story of how bi-weekly arts and crafts were the only time where I forgot, if even for a minute, that I was in the hospital and about to undergo a surgery that eventually lead to nightmares, panic attacks, and sent my imagination into overdrive. But those stories weren’t just stories. They were my life. They were a chance to process through the fear, anxiety, and pain I was feeling without having to figure out how to speak my feelings out loud. They allowed me to revisit the experiences, while also being able to act as a spectator within my own life.

I think that’s why blogging has been so helpful for me over the years. It’s been an escape, while also being the place where I found my voice, became part of a community, connected with other people and families with disabilities, and found a place I belonged.

I’ve spoken about belonging before in the sense of being someone with a disability. To put it bluntly, it’s hard. The world is not made with disabled people in mind. Besides the topic of physical access, there are also areas of education, housing, employment, and access to healthcare. Each of those areas are much, much different experiences for someone with a disability than they are for an able-bodied person. In regards to education, I had to be sure the schools, colleges, and graduate schools I attended were accessible to me. For me, that meant small schools (since walking long distances was hard), limited walking distances between classes, and in the case of college, finding a school with a substantial disabled student population (so I could be sure they had resources I might need). For housing, it meant finding an apartment complex willing to install grab bars in the bathroom so I can easily get in and out of the shower. Employment-wise, it might finding a company to work for that was comfortable with and supportive of my disability.

Often times I feel like I spend so much energy figuring out to live in a world not made with me in mind that there’s no energy left to reflect on the positive things my disability has given me. For instance, I don’t know if I would have become a writer were it not for my disability. Growing up, I wanted to find something to do that I could enjoy that my disability wouldn’t hold me back from. For me, the answer was writing. Short stories, fiction, poetry, song lyrics….and eventually blogging about my life. It’s a place I’ve always known I’ve belonged…the writing community, that is. The blogging community. Right here, with all of you.

So, thank you. Thank you for giving me a home in this crazy, frustrating, but beautiful world we live in. Thank you for encouraging me to come back to blogging. Thank you for the comfort, support, and love. But most of all, thank you for reading. My number one goal as a writer has always been to relate to just one person or have one person’s perspective changed as a result of my words. That, to me, is the ultimate dream. And you wonderful readers have given that to me time and time again. It’s because of you that I keep writing. And because for me, writing is and always will be my oxygen, my passion, and the one place I feel at home.

Disability and Love: It’s Not Impossible

Though I’ve touched on this before, it bothers me that there’s a stigma of disabilities and love within society. Maybe not a stigma…but hesitation. It’s there. I’ve experienced it first hand, and I’ve observed many depictions in the media where a disabled person finds love and it become a news story….or my personal favorite…the article about two people with disabilities getting married. Hear me out, though. There is nothing wrong with two people with disabilities being together in an intimate relationship. If you find the one you love, and they have a disability too, but they also love you right back, then that’s wonderful. However, please don’t settle for a mediocre relationship just because you want to be with someone. And don’t think that just because you have a disability you won’t find love. I’m living proof that’s not the case. However, that also doesn’t mean that a disabled person in a relationship is newsworthy. It’s not. It’s every day life. Unless you’re a celebrity, are you going to have an article in the paper about your date to prom? No.

Was I overwhelmed by the dating process? Yes. Was I worried that someone might not want to be with me because of my disability? Also yes. But you know what? You don’t want to be with someone like that anyway. If someone’s put off by your disability, they aren’t right for you. Simple as that.

I by no means am a relationship expert in any capacity. I just have my own experience as a disabled person trying to find a companion for life. My fiancé does not have Cerebral Palsy like me. Truthfully, I had concerns about being with someone who also had CP simply because I knew the amount of help I’d need physically as I got older, and I wouldn’t want to put someone in a position where they didn’t feel comfortable doing that. Would I have considered it if the person I fell in love with also had CP? Maybe. I’ll never know.

What I do know is this: Find someone who cares. Find someone who loves you AND your disability, not just you (i.e. they don’t have to necessarily be thrilled about your disability, but if they have doubts about your ability to love or be in a relationship because of your disability, you deserve better). Find someone who you can talk to openly about disability logistics (and that right there is the cornerstone to my relationship). If my fiancé and I couldn’t talk openly about how my disability impacts our relationship, we wouldn’t work. Getting to that level of openness with a partner could take some time, but if you haven’t had a conversation about your disability and how it would work in the context of a relationship after a few months, maybe there’s a reason. It’s also possible that you may have no idea how your disability will impact / affect a relationship. That’s okay too. When I first started dating my fiancé, everything was uncharted territory regarding relationships. But we got through it together. We learned side by side. Sometimes we had no idea how to handle certain things. When we went on our first date, he didn’t know whether to help me or whether I’d take offense to that. *Hint, hint*: He asked me what he needed to do / how I wanted him to help me, and I told him. Sometimes I needed an arm to steady myself; sometimes I didn’t. Either way, I communicated my needs to him. Because news flash: someone doesn’t know you need help until you ask. And it’s okay to ask. If you ask, and they say no, run. That person’s a jerk. You’re better off without them.

Love is possible as a disabled person. The smartest love advice I was ever given was: “Stop looking. Love will find you when you’re doing the things you love.” However, I’ll amend that advice to say this: It’s highly likely you’ll find love when you stop relentlessly searching. However, don’t expect love to fall in your lap, either. I had to do my fair share of work in meeting my fiancé. For instance, I initiated conversation first. I approached him first. I knew enough to know I’d likely have to do that, which some may be frustrated by. And it’s certainly not required. I just knew I needed to be proactive, and I knew I didn’t want love to pass me by.

I was lucky. I have found a person to spend my life with who doesn’t view me as a burden. It’s possible for others with disabilities too. Trust me, I’m living proof.