I’m sorry I haven’t spent much time with you recently. It’s just sometimes being around you when you’re getting sicker makes me anxious.
I’m going to change that this year.
I’m sorry you had to miss my graduation and my sister’s sweet sixteen party. If there was anything I could do to change that, believe me, I would. And I’m sorry ALS has taken so much away from you. I know it’s not easy, but you manage to stay positive, which inspires me.
So I would also like to thank you. Thank you for joking about your condition and lightening the mood, showing us your funny personality hasn’t disappeared. I know it is difficult for you to talk seriously about ALS, but your jokes help us cope just as well.
Thank you for finding new ways to be a part of the family through movie nights and sedentary activities. But most of all, thank you for teaching me how to care for others. By helping with your care, I have learned how to be nurturing and helpful, which will serve me well in my future career and life.
Dad, you’ve always been my hero. You manage to make everyone happy during such hard times. Even though you can’t move, you still protect me, and you’re still the same Daddy you were when I was a little girl. I love you and happy Father’s Day.
Your Loving Daughter
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? Check out ourSubmit a Story page for more about our submission guidelines.
Ray Spooner, a certified nurse midwife, who has ushered thousands of babies into the world, was diagnosed with Amyotrophic Lateral Sclerosis (ALS) just a few months after dousing himself in the Ice Bucket Challenge of Summer 2014. An avid cyclist and fitness enthusiast, Ray knew he had little time before his physical capabilities would be taken from him. Shortly after his diagnosis, he made a bold decision to take a bike trip (which Ray affectionately referred to as “A Little Ride”) from America’s west coast to the east to raise funds to support MDA research and services for people with ALS. Ray lives in Urbana, IL with his wife of 33 years Rae. Together, they collaborated on the following photo essay documenting their daily lives as Ray’s disease progresses. The following 18 photographs are just a fraction of the hundreds of shots photographer Justine Bursoni has taken over the last two months. They show a life, a marriage, a family and — of course — love.
“Fairly early on after I was diagnosed, a friend texted and advised that I not look up pictures online of people with ALS,” Ray said. “It was of course too late by then. Today, I no longer have to look on the internet for pictures of what ALS can do; I just have to look in the mirror. If I could, I would be taking photos myself but I can’t hold a camera anymore. Periodically, I will ask my wife Rae to take the odd photo but never to the extent I would if I could myself. Then as chance would have it, I was contacted by someone I’d helped take care of during pregnancy who had an intriguing proposition. Justine Bursoni is a professional photographer and wondered if I would be willing to let her document moments of our everyday life as our ALS journey unfolds — through to the very end and beyond — ultimately embarking on a process of tracing my own mortality. I didn’t have a second’s hesitation. Sometimes Justine will come over and be a fly on the wall documenting our daily activities. Sometimes I will ask for a specific shot that I can’t take myself. And sometimes the whole endeavor is put on hold when our grandson Jack sits in her lap with a book. (It’s hard to explain to a 21-month-old that the woman with the camera isn’t really there.)”
The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness.Check out ourSubmit a Story page for more about our submission guidelines.
I know what you’re feeling. At 14, when my dad was diagnosed with amyotrophic lateral sclerosis (ALS), I felt it all: the shock, fear and sadness that comes with a parent’s terminal diagnosis. I wish I could say it’s an easy road, but it’s not. You may see your parent lose abilities that were taken for granted, until they can require assistance for the simplest tasks. No child or teenager should ever have to experience this. Our parents are still meant to be taking care of us, and suddenly it’s the other way around. I don’t mean to scare you with this information. I know you have a lot to take in, so take some time.
Talk about it and come to terms with your feelings. Vent with family, therapists or friends about what is happening and how it affects you. If you are uncomfortable with that, then talk to yourself. Shortly after my dad was diagnosed, I laid in bed and researched his condition, preparing myself for what lay ahead. I thought about all the things my dad would miss and how much he would suffer. This may seem like torture, but having a good cry that night has allowed me to come to terms with what is happening. Every once in a while, when my dad becomes sicker, I sit myself down and think about what has changed. This is sad, but repressing how you feel can just make you feel worse in the end.
Your relationship with your sick parent will change, but not necessarily in a bad way. Rather than going to baseball games with my dad, we now bond over Netflix. We have wheelchair races instead of playing catch, and he teaches me how to make him the meals he always made me. I spend more time with him now, and I feel like this has made me closer to my dad.
Get to know nurses, aides and caregivers. My dad’s home aide is practically a lifesaver, and she has taught me how to handle things my dad experiences. You want to have a good relationship with the person who’s caring for your parent.
You are not alone in this. Not only do you have your whole family going through the same struggles, but there are many people (like me) who have experienced a parent’s illness. Reach out to someone you know or join a support group. The advice of someone who knows what you’re going through can be invaluable.
Spend as much time as you can with your parent. They will need you more than ever, so be there for them. You now have only a short time to make a lifetime of memories, so don’t take anything for granted.
You’ve got a long road ahead of you, but you will be OK.
The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with 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.
After my ALS diagnosis was doubly confirmed by the University of California, San Francisco and the Mayo Clinic in Rochester, I decided to send a mass email letting my friends and family know what was happening. Partly, it felt ridiculous to be putting this kind of information in email, but I didn’t know how else to share it. When you give people bad news, you often end up managing their reactions, even if it’s your bad news. That doesn’t upset me; I know how hard it is to say the right thing when there is no right thing to say. But I couldn’t imagine the countless conversations as I explained ALS, my newfound area of expertise.
So I opted for email, and I received a lot of beautiful and thoughtful responses. Maybe people didn’t know exactly what to say, but the notes were heartwarming to read. Many were telling me that they believed in me, that they loved me, that they were shocked. Even hearing that people were speechless felt like a form of support. I knew the feeling of being speechless.
One friend asked if I was mad at my body. It was an interesting question, and one I hadn’t thought about before. So I gave it some thought and decided that, no, I wasn’t mad at my body. I felt like this was something that had happened to me, not something that I had done to myself. Fast-forward three years and I’m still not mad at my body. I can feel the effort it’s making to work correctly, even as things get more difficult.
But I am kind of obsessed with other people’s bodies in a new (and I hope not creepy, but probably creepy) way. I’ve turned into a person who stares at people when they’re walking down the street while I’m riding by in a car. I look at their legs, especially the calves of runners. I’m not mad at my body, but I am amazed at how many people’s bodies work. The sheer number of people who are walking down the street on any given day, not understanding that they are performing a miracle.
I am still surprised I’m not one of them. I can’t help but think of myself as an active person, someone who runs, who hikes, who walks with heavy grocery bags. Someone who goes to yoga class and stretches strong legs into the air. Certainly someone who has no trouble breathing.
I’m not mad at my body, but I wonder why it won’t get up and walk across the room. It used to do that so well. I want to stand. I just want to stand up and explain that it is 2015 and we don’t have incurable diseases anymore. They don’t exist. Not everyone survives, of course, but everyone has a chance. Our bodies are amazing things. They can heal from so much. I want to explain this to whoever is in charge of assigning diseases, even though I know that I would be talking to air.
I’m frustrated with my situation. I’m mad at ALS. In my worst moments, I’m even mad at all the ALS organizations that are trying to help, because they haven’t helped yet. I know they’re working hard. I read all the news and see that there are developments to be excited about. But until someone says to me we will fix this in your lifetime or we have good news for you, it’s hard to share the enthusiasm of press releases highlighting studies that might drag on for years before there’s anything tangible to show.
I appreciate that ALS will eventually be a manageable illness, and maybe even entirely a thing of the past. I know this is huge. But I also know so many people living with the disease today, and I want their lives back. I want my life back, and I don’t mind that this sounds selfish. There are a lot of us, and I just want us to have a chance.
When the mass email goes out explaining to everyone that this nightmare is over, I want us all to know that our bodies did their part. That they held on, and we are still here.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, 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 Share Your Story page for more about our submission guidelines.
The Mighty decided to review some current and past Oscar-winning or nominated films over the last 30 years that center on disease or disability. We wanted to see what they got right (or wrong) in their representations. Take a look:
Nominations: Best Picture, Best Lead Actress (Felicity Jones), Best Lead Actor (Eddie Redmayne), Best Original Score, Best Adapted Screenplay
“The Theory of Everything” is an intimate portrayal of Stephen Hawking’s life beyond his contributions to theoretical physics. The film depicts the relationship betewen Hawking (Eddie Redmayne) and his now ex-wife, Jane (Felicity Jones), and portrays how the couple’s bond helped him face his debilitating ALS.
Redmayne spent four months studying Hawkins’ life to prepare for the role, Variety reported. He also worked with a choreographer to more accurately mirror Hawking’s speech and movement and created a chart of how the disease advances, which he used as a guide throughout the filming process, The Daily Beast reported. His extensive training paid off: The Hollywood Times lauded Redmayne’s performance as an accurate portrayal of someone living with ALS. More important, Hawking heartily approved. “I thought Eddie Redmayne portrayed me very well,” he said, according to Yahoo. “At times, I thought it was me.”
Redmayne is an able-bodied actor playing a character with a disability, garnering some criticism.“When disabled characters are played by able-bodied actors, disabled actors are robbed of the chance to work in their field,” Scott Jordan Harris writes on Slate.com. “Imagine what it would feel like to be a woman and for the only women you saw in films to be portrayed by men.” Harris does acknowledges that the actor playing Hawking probably had to be able-bodied, though, because it focuses on Hawking’s life before and after diagnosis.
Based on Lisa Genova’s 2007 novel of the same title, this drama stars Julianne Moore as Alice Howland, a college linguistics professor afflicted with younger-onset Alzheimer’s disease. The story is framed through Alice’s point of view, meaning viewers endure her loss of sense-of-self as the disease progresses.
Genova, a former neuroscientist, claims these types of stories are what is missing from literature on Alzheimer’s. “We have things written by the caregivers, by the doctors, by the social workers, but what about the person who actually has it?” she said, according to The Artery. To prepare for the role, Moore spoke with the head of the Alzheimer’s Association as well as several recently diagnosed women in their 40s. She also visited a long-term care center and spoke with the lead clinician at New York’s Mt. Sinai hospital.
Nominated: Best Picture, Best Lead Actor (Bradley Cooper), Best Supporting Actress (Jacki Weaver), Best Supporting Actor (Robert De Niro), Best Director (David O. Russell), Best Adapted Screenplay, Best Film Editing
Adapted from the novel by Matthew Quick, “Silver Linings Playbook” centers on Pat (Bradley Cooper), a man with bipolar disorder who returns home to live with his parents after a months-long stay in a mental hospital. He connects with Tiffany (Jennifer Lawrence), who’s lived with mental health issues of her own following her husband’s death.
“Silver Linings Playbook” got credit for making mental illness a significant topic in a major Hollywood film but received mixed reviews when it came to how it actually portrayed the topic. In an interview with Vulture, psychiatrist Steven Schlozman argued that though the film isn’t perfect, “Silver Linings” portrays the characters’ respective symptoms, personalities and conversations accurately. When asked about a scene in which Pat and Tiffany bond over their psychiatric meds (clip below), he replied, “to me, that felt de-stigmatizing, not stigmatizing. They got the pronunciations right, they got the side effects right… And the fact that this scene could so blithely make its way into a mainstream film without a lot of explanation around it — I thought that was important.”
Because the film ends with Pat in love and happily off his meds, it could be interpreted as belittling mental illness and the medical system’s role in treating it. Pat repeatedly dodges taking his medication throughout the film, and viewers are intended to sympathize with his decision, implying that medication does people with mental illnesses more harm than good. The New Yorker’s Richard Brody wrote that the film “advocates a faith-based view of mental illness” and declared, “The movie will be a hit with those who think that hyperactivity is just a failure of discipline and depression is merely a bad attitude.”
“The Sessions” is based on the article “On Seeing a Sex Surrogate” by Mark O’Brien, a poet paralyzed from the neck down due to polio. This moving drama examines the often overlooked intersection between disability and sexuality. Forced to live in an iron lung, O’Brien (John Hawkes) has never had sex and, sensing he may be near death, hires Cheryl Cohen-Greene (Helen Hunt), a professional sex surrogate, to help him change that.
“The Sessions” was praised for countering the myth that people with disabilities are uninterested in or not capable of expressing sexuality. “In addition to the social stigmas and structural barriers directed toward disability, those with disabilities are routinely perceived as non-sexual,” Heather Laine Talley wrote on The Feminist Wire. “By contrast, Mark’s sexual desires are articulated from the outset, and Mark’s sexuality is an active force in the narrative.”
Cindy Allen, an actress with cerebral palsy, noted that despite Hawkes’ impressive performance, filmmakers could have cast an actor with a disability. “Playing a disabled role is not about getting an Oscar, it’s about dealing with a disability,” Allen told Entertainment Weekly. “I’m not taking anything away from his [Hawkes’] acting ability, but there are thousands of equally qualified disabled actors out there who can bring more authenticity to the role.”
Nominated: Best Picture, Best Director (Taylor Hackford), Best Film Editing
This biopic follows the life and legendary career of Ray Charles (Jamie Foxx), a blind jazz musician known for achieving worldwide fame despite the adversity he faced.
Foxx received praise for his performance, particularly for representing Charles as far more than his disability. “Mr. Foxx has displayed an intriguing blend of quick-wittedness, bravado and sensitivity, and his recognition of those qualities in Ray Charles is the key to his performance,” A.O. Scott wrote in a review for The New York Times. “You get the sense that he is not just pretending to be Ray Charles, but that he understands him completely and knows how to communicate this understanding through every word and gesture, without explaining a thing.”
To make Foxx’s portrayal as realistic as possible, Taylor Hackford, the film’s director, asked him to wear prosthetic eyelids modeled after Charles’ that rendered Foxx sightless for the duration of filming days. “Imagine having your eyes glued shut for 14 hours a day,” Foxx told The New York Times. “That’s your jail sentence.”
Won: Best Picture, Best Supporting Actress (Jennifer Connelly), Best Director (Ron Howard), Best Adapted Screenplay
Nominated: Best Lead Actor (Russell Crowe), Best Film Editing, Best Makeup, Best Original Score
“A Beautiful Mind” is based on Sylvia Nasar’s 1998 biography of the same name. The film follows John Forbes Nash, Jr. (Russell Crowe), a brilliant mathematician who lives with schizophrenia. It focuses on the harrowing delusions Nash endured and their effect on his career as he developed his mathematical theories.
The film was roundly criticized for oversimplifying mental illness and sanitizing Nash’s story, but Crowe’s portrayal of Nash, which won him a Golden Globe for best actor, has been praised for how he depicted schizophrenia symptoms. “Crowe does a brilliant job of portraying the mannerism, and some of the behaviors of a schizophrenic — the best that I have seen on screen,” Dr. Ken Davis, chairman of psychiatry at Mount Sinai School of Medicine, told ABC News. “On the other hand, the notion that willpower can really overcome schizophrenia is ludicrous.”
Won: Best Lead Actor (Daniel Day-Lewis), Best Supporting Actress (Brenda Fricker)
Nominated: Best Picture, Best Director (Jim Sheridan), Best Adapted Screenplay
This drama is based on the 1954 autobiography of Christy Brown (Daniel Day-Lewis), an Irishman with cerebral palsy, born into a working class family in the 1930s. The film follows Brown, who can only control the movement in his left foot, as he struggles to find his place in the world. He eventually goes on to become a remarkable writer and painter.
Won: Best Picture, Best Lead Actor (Dustin Hoffman), Best Director (Barry Levinson), Best Original Screenplay
Nominated: Best Set Decoration, Best Film Editing, Best Original Score
Charlie Babbitt (Tom Cruise), a young, selfish car salesman, is livid when he learns his father’s $3-million fortune has been left to Raymond (Dustin Hoffman), his older brother who has autism. To get his hands on the money, he travels to the institution where Raymond lives in Cincinnati, kidnaps him and heads back to Los Angeles to claim himself Raymond’s legal guardian.
To prepare for the role, Hoffman spent time with Kim Peek, the inspiration for Raymond’s role. Peek is known for his savant syndrome, which allows him to retain and quickly recall extraordinary amounts of knowledge. Hoffman studied a variety of types of savant syndrome and got to know people with the condition and their families to better understand their relationships. He also visited psychiatric facilities and spoke with medical professionals, The Wisconsin Medical Society Reported.
Hoffman’s performance received significant praise. In his review for The New York Times, Vincent Canby wrote, “From the moment Raymond comes onto the screen, a slight, small buttoned-up figure, avoiding eye contact, speaking in tight little sentences that match the steps he takes, Mr. Hoffman demands that attention be paid to his intelligence, invention and research as an actor.”
“Rain Man” also got points for how it portrays autism beyond Hoffman’s character. At the end of the film, Raymond, after reconciling his differences with his brother, goes back to the institution he was living in at the beginning. This message — that Raymond’s autism doesn’t go away after significant personal growth — avoids oversimplifying the disorder by suggesting it can be cured with love and affection. “‘Rain Man’ is so fascinating because it refuses to supply… sentimental but unrealistic answers,” Roger Ebert wrote in his review. “This is not a movie like ‘Charly‘ in which there is a miracle cure.”
Nominated: Best Picture, Best Lead Actor (William Hurt), Best Supporting Actress (Piper Laurie), Best Adapted Screenplay
Sarah Norman (Marlee Matlin) is a deaf woman and former student working as a custodian at a school for the deaf. When a new teacher, James Leeds (William Hurt), arrives and wants to teach her to speak aloud, she resists, content to use only sign language for the rest of her life. Soon, romantic feelings form between the two. He continues to encourage her to speak phonetically, but she insists that if he loves her, he will communicate with her on her terms.
“Children of a Lesser God” is notable for hiring Marlee Matlin, a deaf actress, to portray a deaf character on camera, but her award-winning performance was attacked by critics for that same reason. In an interview with David Fabry on the blog, How’s Your Hearing, Matlin notes that many critics considered her Oscar victory to be a “pity vote” and that she was not worthy of the award because she was a deaf actor portraying a deaf character and it was not really acting at all. The negative feedback she refers to highlights some of the discrimination actors with disabilities face in the film industry.
Though the acting in the film was well received, it was criticized for employing deafness as a gimmick in an otherwise contrived love story. Roger Ebert remarked in his review of the film that love stories where one of the characters has a disability “seem to treat the handicap as sort of a bonus, conferring greater moral authenticity on the handicapped character,” calling it “a form of subtle condescension.”
*Year next to the title indicates the year the film was released, not the year of the corresponding Oscars ceremony.
What films did we miss? Let us know in the comment section.
Last week, Carbajal posted another video to YouTube. This one captures an incredible moment between his mother and his sister, Vanessa Marie Carbajal, at her wedding. As the video explains, their mother had a fall after the ceremony and had to go to the hospital for a concussion, forcing her to miss the reception. Carbajal’s sister did her best to carry on without her mom there on her big day.
However, at the 0:44 mark, a sweetest surprise happens — her mother shows up, hospital gown and all, for the last dance of the night.
Watch the touching scene unfold in the video below: