Scene From The Fundamentals of Caring

Netflix's New Movie Features a Boy With Muscular Dystrophy Played by an Able-Bodied Actor

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There’s a problem with disability representation in Hollywood.

From Ansel Elgort playing a cancer patient and amputee in “The Fault in our Stars,” to Eddie Redmayne playing Stephen Hawking in “The Theory of Everything,” and Sam Claflin playing a quadriplegic in “Me Before You,” Hollywood has been facing an increasing amount of criticism for casting an able-bodied actors in disabled roles.

Now, “The Fundamentals of Caring,” a new movie based on a book by Jonathan Evision, joins the fold by casting an able-bodied actor to play a character with muscular dystrophy.

The movie, which premieres on Netflix on June 24, tells the story of Ben (Paul Rudd), a caregiver-in-training, and Trevor (Craig Roberts), a young man with muscular dystrophy. The pair, along with a character played by Selena Gomez, take a road trip across the U.S. in what appears to be a coming-of-age dramedy.

“From an actor point of view, it is frustrating to see someone with a disability not played by someone who actually has that disability,” Shannon DeVido, an actress with muscular dystrophy, told The Mighty.

Muscular dystrophy (MD) represents a group of rare, neuromuscular diseases that cause progressive weakness and loss of muscle mass. Because of the progressive muscle loss and weakness, most people with MD use wheelchairs.

“I think there’s some sort of authenticity that is lost there,” DeVido said. “There’s no way they can fully embody the life of what I or any other person with muscular dystrophy deals with on a regular basis. There are certain ways that you’re treated or certain life things you go through that you just can’t fully understand if you’re not a disabled person.”

“I think it is important to say that non-disabled actors can give extraordinary performances playing disabled people. But what they cannot do is draw on their own subjective experience of disability in crafting these performances,” Christopher Shinn, a playwright who has lived in both the abled and disabled world after a below-the-knee amputation for Ewing’s sarcoma, told The Mighty.

“Disability is such a specific experience, and an actor who can integrate their own experience of it with a fictional disabled character’s situation will bring something authentic to the role that a non-disabled actor can’t,” he added.

Take, for example, Eddie Redmayne playing Stephen Hawking, a theoretical physicist with amyotrophic lateral sclerosis (ALS). “Eddie Redmayne is a wonderful actor and I think that he worked really hard to get that physicality of Stephen Hawking,” DeVido said. “But – not that I’m saying Stephen Hawking should have played himself – that physicality, you can’t fully grasp what it feels like not to have any muscle control or any muscle mass.”

“I don’t care how brilliant of an actor you are, and [Redmayne] is one, you just can’t fully understand it,” she added.

Actors with disabilities are, of course, out there. “I think you need to write stuff that is worthy of using disabled actors and I think that once that material is written and it’s good and it’s pushing boundaries, I think that you find someone who can accurately portray it,” DeVido said.

Whether or not disabled roles need to be played by disabled people depends on who you ask. Some people have compared able-bodied casting to blackface, while others say “it’s just acting.”

“In response to the common comment ‘it’s called acting’ – people largely accept that a certain authenticity of performance comes from drawing on lived, felt experience,” Shinn said. “For example, Mark Wahlberg has often played violent characters, so it’s not a surprise when you look into his personal history and discover that he was sentenced to two years in jail for assault when he was younger.”

“The fact is, actors do more than ‘act,’ they draw on who they are to create real and compelling people. To act is really to mix acting and being,” he added.

If disabled actors are out there and they bring to life an element that able-bodied actors can’t, why isn’t Hollywood casting them?

“Disability is scary to some people,” DeVido said. “People like knowing the fact that the person playing the person in the wheelchair, when the cameras are turned off, can get up and walk away. They like that comfort. They like to know that ‘oh, they don’t live their life like that.’”

“That’s not a message Hollywood needs to keep putting out there,” she added. “Disability is not that bad. We have trials and tribulations that we go through every day, but we’re still kicking and still awesome people who need to be portrayed accurately.”

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What I Want People to Know About Living With Limb-Girdle Muscular Dystrophy

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I have limb-girdle muscular dystrophy (MD); I was diagnosed at age 24. I started to get symptoms around 2009. While in graduate school for fashion design and merchandising, I began to fall repeatedly; my leg would just give out on me without notice. I wasn’t able to pick myself back up; I would need assistance from someone to lift me up with all their might. I also began to notice that I was unable to lift my right arm up all the way when I tried to reach for certain things in the kitchen cabinets, or exercise. At first I thought maybe I needed to go on a diet and lose weight, but in the back of my mind I knew it was something more.

Keisha Greaves
Keisha.

First I went to see an orthopedist, but was referred to a neurologist. The neurologist gave me a muscle biopsy, MRI, EMG and other tests. I was finally diagnosed with limb-girdle muscular dystrophy. Limb-girdle is a form of MD that affects the limbs from the shoulders all the way down to the legs, and it progressively gets worse.

The first thing I thought was how long am I going to live? Will I be in a wheelchair soon, and what is my life going to be like from now on?  I knew I had to be strong and continue to do what I have to do. To feel healthier, I joined Weight Watchers with my cousin and lost over 36 pounds. I’ve been able to keep half the weight off, and I am still determined to lose more.

There are multiple types of limb-girdle muscular dystrophy, and five years later my doctors are still trying to figure out which type I have. They do know that the types I may have can affect my heart, so I get regular echocardiograms to make sure everything is OK.

Living with limb-girdle muscular dystrophy is still new to me. I wake up every day not knowing how my legs are going to feel or how much pain I may have. I try to be very careful when walking because if I fall, I won’t be able to pick myself back up. Although I am on my feet a lot for work, after a certain number of hours, my legs start to weaken. I am currently a visual merchandiser for a very popular clothing store. I enjoy my job because it keeps me and my legs active, and I enjoy traveling to the different store locations and doing what I love in the fashion industry.

I have the wonderful support of my family and friends, but at the end of the day, they have little idea what I go through on a daily basis. I try to explain to them how my legs feel, but it’s hard. I still go out and enjoy my life, but I always have certain things in the back of my mind. When going out I find myself researching where I am going first, asking does this place have stairs? Does it have an elevator? My friends and family have no idea I must think about these things.

Living with MD has made me realize how strong I am. I sometimes get stares because people wonder what a young girl like me is doing walking with a limp, with a cane, or parking in a disabled parking spot. But I don’t mind, because they just don’t know me. Although my MD has progressed over the years, I have learned to accept it and make certain changes to my life, such as walking with a cane to keep my balance. At this point I am just taking everything day by day and staying strong. But there is one thing I want people to know.

There’s no cure or pill to “fix” my muscular dystrophy. But the endless support from family and friends helps. Living with MD is the hardest thing that I have ever done, and I consider myself much stronger for doing it. Never, ever underestimate the power of your desire. I believe if you want to live badly enough, you can live. The greater question, at least for me was: How do I decide the way I want to live? That is the question I’m still working on answering.

Follow this journey on Life With Muscular Dystrophy. If you would like to buy one of my t-shirts, head here.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What I See When I Look At My Husband With Muscular Dystrophy

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When we said for better or worse, in sickness and health, I meant it.

When we married, we could never possibly imagine that you would be diagnosed with limb-girdle muscular dystrophy. When suddenly you were tired, your muscles grew weak, and your back was always in knots, we knew something was wrong. After all the doctor visits, referrals, surgeries, and painful tests we knew our future would change. Through it all, your smile, the way you constantly make me laugh, the way you make me feel safe and loved has never changed. Even after your diagnosis.

I know some days it can seem daunting and the obstacles may appear too tall. But together, we will overcome those obstacles. You may look in the mirror and see a skinnier version of who you once were, or someone who tires easily and can no longer chase me around the house, but I don’t see it. When I look at you I see your heart, your endless love for helping others, your ability to make everyone feel better. I see an amazing father who loves our boys more than anything. I see my husband who is the same man I stood next to on our wedding day.

I don’t look at you and see muscular dystrophy. I look at you and see the incredible man that you are. You are not your disability. Your future is bright and your strength shines from within you. When I vowed to be your wife, I vowed that all of me would be with all of you. I am here to help you over those mountain-sized obstacles and hold your hand when we go on walks, pick you up when you have sat too long on the floor, or support you when you have to climb stairs. The only thing that matters is that I am with you. I will hold you in my arms and run all around the world for you. Together we will be strong. My heart is ever at your service.

The Thames family -- parents and 2 boys outdoors

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To My Boyfriend, Whose Love Doesn't See a Disability

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As someone with a physical disability, I have always thought I would never find someone who would see past my challenges. I especially thought I would never find someone who would love me. That all changed when I met you.

I have been in relationships, but they never lasted more than a couple of months. The boys couldn’t see past my disability. They got sick of helping me. I always felt like having someone help me was a “burden” on them, and my ex-boyfriends confirmed my feelings. I ended up not trusting guys, until you came along.

We met at work almost three years ago. We were both in relationships at the time, but instantly became friends. I thought you were cute the first day I met you. You made going to work fun. You always knew how to make me laugh, even if it involved scaring me or giving me a wet hug after you were outside, in the pouring rain, collecting carts. Little did I know you would be the best thing that has ever happened to me.

A Facebook post I made changed both of our lives. I posted that I was done dating. I was giving up on dating because I was sick and tired of talking to and going on dates with guys who would instantly ignore me when they found out I had muscular dystrophy. They next day, you asked me out, and to be honest, it threw me off.

Thank you for not questioning why I would probably need help getting into your car when I told you on our first date. I also want to thank you for not thinking twice about helping me with the little steps to get into my house. When you didn’t question why I needed help, I started to relax and slowly let you break down my wall that I’ve built for the past 20 years.

Talyah and her boyfriend

Two months later, it came time for me to tell you I had muscular dystrophy. I was so nervous. I didn’t know what your reaction would be. It got to the point where I didn’t want to tell you. When you said my disability “wouldn’t be a good reason for me to leave you. I wouldn’t be able to. I love you too much,” I fell for you even harder. That comment instantly broke down my wall and I knew I did deserve to be loved.

You made me realize I was the one stopping myself from finding love because of my instant thought that I shouldn’t be in a relationship just because I have a disability. You taught me love doesn’t see a disability.

Thank you for helping me get into your house. Thank you for driving me to and from different places; I promise, I’m working on getting my driver’s license. Thank you for not complaining about helping me. Most importantly, thank you for loving me and seeing past my disability. Thank you for coming into my life and changing it for good. I love you to the moon and back.

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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18 Things People Affected by Neuromuscular Diseases Wish Doctors Understood

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Neuromuscular diseases and disorders affect the nerves that control voluntary muscles, and over the course of time, the disconnect between the nervous system and the body causes muscles to weaken. An estimated 1 million people in the U.S. have some form of neuromuscular disease, and about 40 percent of them are under age 18, according to the Muscular Dystrophy Association.

Muscular dystrophy and ALS are among the most common neuromuscular diseases, but even with the amount of research and awareness campaigns, most of these diseases still don’t have cures. On top of that, many patients with neuromuscular diseases, along with their family members, have expressed their frustration with the lack of knowledge among doctors.

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So The Mighty teamed up with the Muscular Dystrophy Association to ask their Facebook community what they wish medical professionals understood about neuromuscular diseases.

Here’s what they had to say:

1. “We are not a textbook case. Each one of use is different.” —Debbie Furgason

textbook

2. “Just because we look healthy on the outside doesn’t mean we’re feeling good in the inside.” —Jessica Jamison

3. “For me being a sibling, I would like doctors to remember that the whole family is dealing with muscular dystrophy.” —Allison Beaumont

whole-family

4. “We have pain and are not after drugs for the hell of it.” —Becky Pierce Jones

5. “Listen to patients.” —Valerie Weaver

6. “Don’t blow a patient’s complaints off.” —Joanne Mims

blow

7. “Don’t act like I’m wasting your time. Have more info on the type of MD I have instead of looking in the medical book.” —Julie Anderson

8. “I am the one who cares for my child 24/7. Therefore I do know what I am talking about, and I do know what my child needs.” —Trish Ehrenfried

needs

9. “Don’t assume you know how his physical disability affects him socially or emotionally, but don’t discount that it does have an impact.” —Tina Riley

10. “It is an economic disaster on the entire family.” —Debbie Thomas

11. “This is a medical profession, not a paycheck.” —William England

paycheck

12. “When dealing with a new doctor, I need them to understand that yes, I can talk medical terminology.” —Brandi Vozsnyak

13. “Give patients more information because sometimes we don’t understand what is happening to us.” —Christopher Parsons

information

14. “When my doctor finally gave me the ALS diagnosis, he would not look up from his shoes. Doctors need to learn how to give a diagnosis as part of their training.” —Pierre Lescure

15. “Parents and patients today need open dialogue throughout all of the diagnostic appointments.” —Maggie French

16. “Doctors, please continue to follow your instincts and advocate to help families find answers.” —Becky Rovenstine

advocate

17. “We didn’t ask for MD, but we have it and we have to live with. Help us manage it, listen to our concerns, especially when there are no clinics within a 10-hour drive. You are our resources.” —Marjorie Martinez-Langdon

18. “Understand that anyone at any age can have MD.” —Greg Brown

For more information, be sure to visit the Muscular Dystrophy Association’s website and Facebook page.

*Some responses have been edited and shortened for brevity and clarity

All images via Canva

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Jillian Mercado, Model With Muscular Dystrophy, Slays in Beyonce’s New Campaign

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Jillian Mercado has been slaying the fashion industry for a few years, and Queen Bey has taken notice.

The model with muscular dystrophy announced this week she’s featured on Beyonce’s website wearing new merchandise.

“OK LADIES now let’s get in FORMATION! So BEYond excited to finally announce that I’m featured on the official @beyonce website!!!!” Mercado wrote on Instagram.

If you go to shop.beyonce.com, you can see Mercado modeling the latest round of Beyonce merchandise.

beyonce ad featuring jillian mercado
Photo via shop.beyonce.com
jillian mercado in "slay" t shirt
Photo via shop.beyonce.com
jillian mercado in "conversation" t shirt
Photo via shop.beyonce.com
jillian mercado in "smack it" sweatshirt
Photo via shop.beyonce.com.

Mercado has made headlines several times. In 2014, she modeled in Nordstrom’s ad campaign alongside Alex Minsky, who lost his leg while serving in Afghanistan; Shaholly Ayers, who was born without her right arm below her elbow; and Heather Taguchi, a 7-year-old girl with Down syndrome. Later that year she starred in the “What’s Underneath Project,” a video series where people take off their clothes while being interviewed. While discussing her edgy style and what it’s like to be a model with a disability, she offered this gem: “If you’re different, that’s sunlight in somebody’s world.” She went on to star in a Diesel campaign and is now a regular at New York Fashion Week.

Of course, we look forward to the day when it’s not news that a person with a disability is featured in an advertisement, but we love how Mercado has continued to push for inclusion (wearing some badass clothes while she does it).

h/t Mashable

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