Finding Hope Amidst Change: Sound of Metal, Disability and Adapting

In Darius Marder’s 2019 film Sound of Metal we, as the audience, are introduced to a character named Ruben. He is the drummer in a metal band with his girlfriend, Lou. Approximately 10 minutes into the film Ruben loses his hearing; it is sudden and unexpected. He then visits a hearing specialist who tells him that he won’t get his hearing back, much to the fear and disappointment of the central character. Sound of Metal takes us on a journey that most people would never consider possible. Ruben and Lou go their separate ways so Ruben can move into a deaf community home where he will learn how to live with his newfound disability. Perhaps the premise of this film may seem unrealistic but that’s far from the truth of the matter. 

To those who are abled and convinced that they do not have underlying ableism-prejudice against disabled people- it is worth attempting to understand the fact that it is impossible to be absolved of ableism. Despite how much you believe that you care for disabled people it’s likely to be unfounded. You will spend a life agreeing with the notion that disabled people are lesser, whether it be consciously or unconsciously. Able bodied people have been born and bred to understand that those with disabilities are inherently inept or incapable of being their equals. However, it’s possible to attempt to unlearn your ableism and help those of us who need it, despite our appearances, presumed health, and the idea that we are a monolith. 

One morning I woke up with my body feeling unlike the one i was used to. It was a school morning, and when I attempted to drag my ragged bones out of bed I discovered that I couldn’t move. Sure, I was able to move my hands and my head but I physically couldn’t move any other part of my body. Racked with fear I called my father to inform him of what was occurring. What happened immediately after isn’t clear to me, as I was in a considerable panic. I was only sixteen years old when I got my first MRI and CAT scan. I only remember them because of how hard I cried in the parking garage because I somehow understood that I was different now. I feared death despite my past of embracing it.

By the time I was getting tested for anything that could have caused this I was able to walk again, though not without excruciating pain. Over the course of a few months every test I’d had done-the blood tests, the nerve test, the MRI, the CAT scan- all came back negative for absolutely anything. I began to exist as an enigma within a void; a void I believed to exist between being able bodied and physically disabled. I was experiencing a presumed total body death.

There was no guidebook or manual to educate me on how to live my newfound life. I was alone on this crash course as no one around me could begin to comprehend what I felt every waking moment. There were things I had to adjust to; not being able to take a bath or shave because I could no longer manage to sit or stand in the tub without my entire body radiating with pain. I learned to always keep snacks beside my bed, and plenty of water because there was no way to know when I would wake up unable to journey downstairs for food. I can’t lift most heavy things because my joints have weakened, or even open some packages of food without my wrists folding in on me. I got adjusted to most of the changes over time. The hardest thing to accept was the ideal that my quality of life had decreased, and it seemingly had.

I eventually began treatment for my mysterious ailment with the help of my new neurologist. When I received my first epidural my toes curled. For a split second I thought I’d been given the opportunity to become healthy again. My legs became ribbons as I walked out of his office; I had never felt so light. My neurologist also prescribed medication to ease the pain, only to be used as needed. My body quickly adjusted to them and no time was wasted in providing me with something stronger to be taken daily. Rinse and repeat. I do not feel compelled to divulge every medication I’ve been on for my condition but looking back I do not believe a sixteen year old should have been prescribed them so carelessly, especially considering the high risk of disabled people becoming addicted to our medications.

Admittedly I became dependent, leaving class to take whatever as needed medication I’d been prescribed, only to end up so drowsy that I’d sleep through two or three classes. At the end of the school day I’d stretch and sigh, relieved to have had my pain alleviated. Despite missing much of my last two years of high school due to these impromptu naps, doctor’s appointments, and sick days, I managed to keep up with my schoolwork, be a teacher’s assistant, and tutor after school. Being mentally busy kept me from focusing on how much I was physically and emotionally suffering. I now realize this further contributed to the belief of my classmates and teachers that I wasn’t really disabled. I quickly realized that abled people had very little expectations of disabled people. There’s the standing belief that we are supposed to accomplish very little, not because of lack of determination, but because we are assumed to be incapable of excelling at anything; the exception for able bodied people being people like Stephen Hawking who set standards for excellence.

This begs the question: Is one’s worth as a disabled person contingent on the expectations others have for them? You’ve probably seen a person you’ve presumed to simply be lazy take the elevator up a level or two instead of using the stairs; you’d have convinced yourself that person had no logical reason to do things the “easy” or “lazy” way. Here’s where the ableism comes in: what if that person were disabled? You were functioning under the belief that all disabilities are visible or the belief that every physically disabled person uses a mobility aid such as a wheelchair, which is simply untrue. One does not have to openly suffer and struggle in order for us to be valid as a disabled person. From family to doctors there are people that believed because I was a fat black person I had to have been being dramatic, I was only in pain because of my weight, or I simply wasn’t a hard enough worker.

There have been plenty of times I considered getting a cane or a wheelchair so I wouldn’t have to endure the pain of walking when I was at my worst. I’ve considered back braces, knee braces, weighted blankets, and holistic medicine. I resigned to suffering because I didn’t want to be further accused of being dramatic or attention seeking, a shared fear of others with invisible disabilities like myself. I genuinely believed the opinions of strangers mattered more than my health.

In my final year of high school after many meetings, a doctor’s note explaining my condition, and complaints from my father and I my school granted me a seemingly all exclusive elevator pass, which in reality was simply a laminated piece of blue construction paper with my name and “elevator pass” printed out on it. I was also excused from physically participating in gym classes and given the position of coach’s assistant. My classmates seemingly simultaneously hated me and treated me like I had found a cheat code; I’d managed to cheat my way through high school all in the name of being lazy. Or so they believed. 

Most days however I was locked out of the elevator and denied access by uninformed teachers and administrators, despite my frequent demands for a key. The adults around me were somehow convinced I was a malicious, conniving liar. They were functioning under the suspicion that because my disability wasn’t visible I must have just been lazy; my being fat only worsened their doubt. I was fat so of course my level of activity had to be even higher than that of the average thin person. They were “allowed” to have “poor” diets and low activity levels. There’d been nothing to support their suspicion but nothing stopped them from making things hard for me.

After becoming disabled I lost all hope that I’d have a future doing what I enjoyed, let alone a future at all. I couldn’t convince myself that there were any viable career options for someone like me, that I’d ever be able to maintain any form of a relationship, that I wasn’t a burden to those around me. After graduating from high school life slapped me in the face once again; I’d decided I couldn’t handle college merely months after I’d become disabled but it wasn’t set in stone until the fall after my high school graduation and I simply didn’t go. I didn’t have anything left in me and the expectation to outperform my peers once again was too much to bear. I also lost my health insurance because of my unemployment. The epidurals, the medication, the moments of bliss were all swept from under me.

This was where things got harder than I’d prepared myself to be emotionally and mentally equipped for. I applied for disability benefits and of course I was denied under the notion that I simply wasn’t disabled enough, that I could handle the daily responsibilities of any abled person. I’d also been repeatedly denied health insurance. I had no options, not even the terrible, gritty, options. I suffered further. Unable to cook or clean most days I simply resigned to staying in my room watching films and television. Day in and day out I needed an escape for what I didn’t want to admit was my reality.

My disability coupled with my mental illnesses lead me to believe my life was unlivable. I wouldn’t be being dishonest if I said I hadn’t been brought to the verge of suicide on many occasions. However, there was something in me that wouldn’t allow it. I wasn’t living for anyone or anything in particular at that point; There was simply an indescribable feeling that I had to be here. Maybe I wanted to believe that one day things would be better and my life would turn out to be some inspirational story suited for the Lifetime channel. I fantasized about proving my doubters wrong and accomplishing everything I dreamt of. Either way I was stuck.

I began to educate myself further about many things that piqued my interest, one of those things being disability. I sifted through pages of Google desperate to learn anything that would give me an understanding of this world and why I’d been dealt such an odd hand. I found people like me on forums and blogs; people with unexplainable conditions, physical disabilities, mental disabilities and any combination of those things. I finally began to feel that I wasn’t alone after two years of internalized misery.

Fibromyalgia was among one of the names that describe my conditions. Characterized by widespread pain caused by trauma it was the only thing that made me feel close to an explanation. There’s no definitive way to determine if that condition is what causes my pain but knowing that there were people with experiences that parallel mine was enough for me. I had found my people.

When I was able bodied I’d never thought negatively of disabled people. In fact I got along with them and felt that it was my responsibility to help them if need be. I’d always been a shining example of a child and this was no exception. This has never been the case for the people around me; no consideration for what I need to make navigating my disability either simply because I look “normal” and there are things that I can manage to do without assistance.

Some days, some moments, are worse than others. I can wake up in the morning able to cook breakfast but my noon I am writhing in agony, likely curled up in bed under my blankets. My body has no rhyme or reason for the pain. I’ve learned to live from minute to minute. I rarely leave the house alone for various reasons, one being that if my nerves go haywire and I need help walking after a long period of time or not crying I’d prefer not to rely on a stranger. I’ve only had one friend to regularly take my disability into account, and I don’t think I’d be able to go a lot of places without them. I’m lucky to have anyone willing to care about me in that way. Some of my counterparts are not as fortunate.

I often look at my disabled counterparts who have it worse than me and have to remind myself that misery is not a competition. There are days when I seethe with jealousy at the prospect of someone’s disability being considered more valid than mine simply because it is visible; I find myself wishing I were them. If God or the Universe had to give me this life why couldn’t they give me a disability that would at least garner sympathy? I’ve often thought that I would rather be considered weak than strong, because there are days that I crumble and can not be expected to fight for myself.

In a world where there are so many varying forms of human existence, mine seems to be the most unbelievable because I don’t appear disabled enough, or disabled at all even. How can one deny a suffering that they can not feel? You can not feel the way my nerves light up when someone’s fingers graze my arm, the way my skin burns and aches every moment-but especially in the summer- the way the cold of the winter stiffens my joints. When I fall down a set of stairs, trip, or stumble it’s just me being clumsy to most, not my joints giving out and failing me. There is no way to measure the pain of another so why must everyone attempt to do it with disabled people?

There comes a moment where everything stops. The suffering, the assumptions, the judgement; for a brief second all you can hear is the best of your own heart. I’m not sure of when the second happened for me but it changed everything. I was alive. My life is not unlivable or worth any less than yours because I’m disabled. If I can find value in my life there is no reason others can’t. My life isn’t filled with nothing but abject suffering.

I’m still a person; I enjoy as many things as the next human being, if not more passionately. I laugh a lot-maybe too much. The good and the bad do not outweigh each other, but exist in perfect harmony. Contrary to my former belief being disabled had not ended my life; at the ripe age of twenty-three my life is only just beginning.