9 Ways 'The Fundamentals of Caring' Speaks the Truth About My Life With a Disability
Note: This article contains a few spoilers.
I recently had a chance to watch the new Netflix original film “The Fundamentals of Caring,” based on the novel by Jonathan Evison. It’s one of those rare films that gets disability right — for the most part. It’s the first time I’ve ever seen something close to my own life reflected in the mass media. Imagine being well into your 30’s and saying that. But it’s reality for most of us who have disabilities. Nearly every film about disability misrepresents our lives to the point where characters who should be like us are unrecognizable to us. So “The Fundamentals of Caring,” with its fairly realistic portrayal of a young man in a wheelchair, is a breath of fresh air.
The plot follows the typical “road trip movie” formula, but manages to do so without devolving into disability stereotypes or cloying sentimentality. Ben (Paul Rudd), a grieving, struggling writer, takes a job as a caregiver for Trevor (Craig Roberts), an 18-year-old with Duchenne muscular dystrophy. Intelligent, foul-mouthed, and clearly frustrated with his limited life thus far, Trevor is fairly insufferable — but Ben refuses to let him keep wallowing in bitterness. Together, they embark on a road trip to visit some of America’s weirdest roadside attractions, meet Trevor’s estranged father, and pick up hitchhikers including Dot (Selena Gomez), a romantic interest for Trevor who’s as cynical as he is. In the process, they learn to accept themselves and start living again.
I do have a few problems with the movie, the biggest one being that the actor playing Trevor didn’t have a disability. Although Craig Roberts did a good job, there were some inconsistencies in Trevor’s amount of physical limitation that likely wouldn’t have occurred if he had been played by an actor with a real disability. But none of the minor errors detracted from the message of the film, and overall I found it to be accurate in the ways that matter. In fact, it was eerily similar to my life to the point where I’ll be making it highly recommended watching for new caregivers, especially people who want to travel with me. Here are 9 ways “The Fundamentals of Caring” speaks the truth about my life with a disability.
1) Classes don’t teach what it’s like to be my caregiver.
I often get applicants who emphasize that they have their CNA, HHA, or some other type of training as a reason why they are qualified for the job. I am sorry to say this, but a classroom doesn’t teach you anything about what caregiving is really like. In fact, sometimes they teach things you’ll have to unlearn, like taking a purely medical approach to disability. Every disabled person has their own preferences and needs, and you’ll be helping them in the ways they want and need you to, not necessarily the way you were trained. “That’s not in my job description” is not a valid excuse in caregiving. My caregivers have helped me with tasks and in situations that are nearly as crazy as what you see in the movie. Life happens, and great caregivers roll with it.
Like in the movie, most caregivers get paid a crappy wage, but in many cases, their employer won’t have control over that, because the funding comes from the state and they may not be able to afford to supplement pay out-of-pocket. It can be a great job or it can be a sh** job. It depends partly on the person you’re caring for, but even more importantly, it depends on you and the attitude you bring to it.
2) I swear a lot.
It’s true. I’m not innocent and angelic like the disability stereotypes. I swear, I have opinions, and I don’t sit around being fawningly grateful to everyone who does the tiniest thing to help me. I appreciated how they made Trevor a typical horny, smart-ass teenager who wasn’t afraid to bring up embarrassing topics. We people with disabilities have sexuality and desire relationships just like everyone else.
3) Many significant moments in my life have taken place on the toilet.
The bathroom scenes in “The Fundamentals of Caring” made me cheer out loud, just by virtue of them being in the film. Most movies shy away from the bathroom as a place too embarrassing to show. But we people with disabilities, in general, spend a lot of time on the toilet, and we learn to make the best of it. I’ve had some of my best ideas for essays and projects and businesses while sitting on the can. I’ve had some great conversations with caregivers there. And yes, sometimes I’ve needed somebody to wipe my ass. That doesn’t make me any less of an awesome, intelligent, and funny person, just as it didn’t with Trevor.
4) I can’t give somebody the finger.
You know that scene in the movie when Ben asks Trevor what he would most want to do if he didn’t have a disability? I knew what he was going to say before he said it, because let’s face it, guys are lucky they get to pee standing up. My answer to that question would be, “give somebody the finger.” Like Trevor, I can’t do it. No, I’m not an angry or hostile person in general. But I’ve had those moments when I see somebody in a disabled parking space who doesn’t have a permit, and I really want to flip them off. Instead I can only give this vague hand gesture where my middle finger is up, but my index and ring fingers kind of are too. So never mind walking… I just want to flip someone the bird.
5) I have a crappy minivan.
One of my small quibbles with the movie is that I’ve never seen a home health agency employee driving a company vehicle that was accessible. Apparently that was a change from the book, in which Trevor and his mom had their own van. But they definitely nailed the look of the crappy old minivan. At $50,000 for a new accessible van, people with disabilities who can even afford a van either buy an old used one, or keep their new one for 10+ years until it falls apart. The only thing they missed was showing them putting something on the van back together while stopped on the side of the road. There’s a reason my 2003 Chrysler has an “emergency bag” with duct tape, zip ties, and WD-40.
6) Their road trip is just like every one of mine.
Except I’ve never picked up hitchhikers. Yet. But I’ve met lots of awesome people by talking to strangers and being willing to go outside my comfort zone. Almost everything else they showed has happened to me. Staying in shabby motels with questionable accessibility, people lifting my power wheelchair up stairs or pushing it up a cliff-like ramp… Yep, it’s all happened. And I have actually left important medical items, such as medication and my battery charger, at hotels.
Like Trevor, I love roadside attractions. One of my favorite places in the world is the Buffalo Bill Cody Museum in North Platte, Nebraska. I also adore the Coney Island sideshow. Thanks to this movie, I’m definitely adding the World’s Deepest Pit, if it actually exists, to my bucket list.
7) Travel is the best way to embrace living.
Trevor at the beginning of the film reminds me of my abusive ex who had a chronic illness. She was more interested in feeling sorry for herself and making everyone else’s life miserable than in making the best of her situation and living life to the fullest. She was dragging me down with her, and I felt helpless and hopeless. But thankfully, there was something inside of me that never gave up. When I had the opportunity to take a spontaneous road trip from California to New York City, it transformed my life. I left the abuser behind in her wallowing and have gone on to success and greater happiness than I believed was possible.
8) The Ben and Trevor relationship is exactly what a caregiver / client relationship should be.
When I’m hiring a new caregiver, the most important qualification I’m looking for is someone who is honest and reliable. But after that, I ask myself “Is this someone I want to hang out with?” I will be spending hours with them every day. They’ll be helping me during the most private moments of my life. They’ll be part of some of my greatest joys and worst heartaches. They’ll go to bars and theaters and shopping with me. I’ve tried hiring people who are nice but with whom I have nothing in common, but it’s never worked long term.
Trevor and Ben remind me of me and “C,” my awesome caregiver for five years when I lived in San Diego. She was reliable, supportive, and great fun to hang out with. She also wasn’t afraid to call me out on my bullshit if I was being a jerk or feeling sorry for myself. She helped me get out of the abusive relationship, and build a new awesome life. She eventually saved us when we were attacked by a masked gunman in a home invasion robbery. That incident forced me to move to another state for safety reasons, but we still talk and she will always be an important person in my life.
I know not everyone feels this way. Some want a professional who will come in, do the job, and leave so they can go about their life. But for me the caregivers who are the most special, whom I will never forget, are those with whom I forged a bond.
9) I reject the “tragic ending” stereotype of life with a disability.
I spent the whole movie wondering “is this kid going to die?” That’s the prevailing narrative in disability-themed movies. You hear “kid in a wheelchair with muscular dystrophy” and you think he’s gonna be a goner. I won’t spoil the ending, but let’s just say it might not be what you expect.
It’s certainly not what I expect from my life, either. Granted, unlike Duchenne muscular dystrophy, cerebral palsy isn’t life-threatening. We can be prone to certain other illnesses and face complications from aging and surgery, but I’m more likely to die from the breast cancer that plagues my mom’s side of the family than I am from anything to do with CP. And yeah, we all have to go someday. But I plan on being around for a long time, and spending every moment of my life living, getting out there and enjoying the world whenever I’ve got enough money in my bank account or my credit card isn’t maxed out. “The Fundamentals of Caring” isn’t about an ending, it’s just the beginning. I feel like I am at the beginning of the next part of my story, too. I can’t wait to
watch make the rest unfold!
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