Woman with Muscular Dystrophy Documents her Death on Instagram
When the movie “Me Before You” came out I was not excited nor did I plan on watching it or engaging much in it’s narrative. Let me tell you why.
I did not see if for reasons I’m about to share, but again, I did not see it so I’m going off of what I know from the media. It’s a romance about a man that’s disabled and falls in love with his caregiver (cute movie so far, if you’re into romance.. what’s more romantic than a hot girl wiping ass) that follows his journey of his decision to commit physician assisted suicide.
In a society that is just brimming the surface of adding disability representation to the world, we are seen in this misguided gate: a disabled character played by a very non-disabled actor who wants to kill himself because his disability is so awful. Not to mention this book was written by a non-disabled person. This very large box office movie & best selling book in many countries plays directly into the disability stereotype narrative that disabled people don’t live happy, meaningful lives and would be better off dead.
While I had razor blade across the tongue amount of distaste for this movie, it’s fiction. It’s an entertainment piece that was created purely for audiences to be entertained. Me, being the realist that I am, is well aware that not everything you see in a movie is true and at the time I had some faith in our society to do their diligence in taking that story for what it is: a piece of fictional literature made to entertain. My more cultured self now knows that I was wrong. The media and entertainment industry has a systemic effect on how we conceptualize stereotypes, including disability, even if it was a made up story.
THIS MADE UP STORY HAS NOW GRACED US WITH A REAL-LIVING FACE.
One of my main goals as a disability advocate is to empower and teach. I openly share my unfiltered life with SMA on Instagram- the good, the bad, and the raunchy. If you don’t know me already, I’m a 25 year old (baddie) who lives in Chicago. I run an online shop (right here), write poetry, and blog about life with SMA on Instagram. SMA (Spinal Muscular Atrophy) which is a form of Muscular Dystrophy, is a degenerative disability that causes muscle loss over time.
I had to share that tidbit before diving into the nitty gritty of this article.
a few months ago i saw an article pop up on my feed about a woman with muscular dystrophy who is documenting her slow death on instagram to advocate for euthanasia.
As someone with a type of Muscular Dystrophy, my curiously made my little disabled finger click that link at disabled lightening speed to learn more . I learned that Holly Warland is a 27 year old Aussie who has Limb Girdle Muscular Dystrophy. Several media outlets have given her story about her documenting her slow death on Instagram a platform and many have gone viral, as her story is receiving wide coverage.
i’m dismayed by this.
Before I decided to write a article of my ramblings I decided to do some research.
Holly is a affluent, educated person who has access to good healthcare and who has a loving boyfriend & family that takes care of her. I decided to dive into her story further before making blasé assumptions about a person I don’t know. I scrolled through her Instagram feed post by post as my disabled toes metaphorically curled with my assumptions being confirmed. Holly is trying to get assisted euthanasia legalized and has made the decision to end her life. Post by post she shares graphic photos with a blurb about how awful her disease is and how she is not here to be an inspiration. She often separates herself from disabled people who are more “positive” and identify with their disabilities saying that she’s not inspirational. I just released a few blogs about inspiration and disability along with my tees that say “you’re so inspirational,” thank you, next. Needless to say, I am with her on that disability should not be fetishized as inspiration porn and we should share the rawness and not always pleasant sides to disability.
BUT, THIS IS WRONG.
She shares this photo with this caption:
“This is what the last 2 years of #musculardystrophy has done to my body.
The pictures with the blue background were taken today, nearly exactly 2 years after the originals beside them. My 200th post!
As I've expressed before, these pictures are purely educational. I don't give a fuck of you have a problem with this 'nudity' because I've had so many strangers (doctors, carers, etc) see my #body I have no shame.
I want people to see the hideous side of #disability. Can you see my hips and knees turning inwards? The bones in my buttocks protruding to the point where sometimes the pain feels like the bone is splitting through the skin. The large loss of #fat and #muscle mass resulting in me looking broken and starved. My arm's ligaments are tightening and getting shorter, making this the straightest I can stretch it. The bony hump that has formed above my butt. My feet have 'dropped' a term used to describe the weakening of the Achilles tendon making the feet fall forward, not sit up. These pictures further confirm my opinion that the recent 'All bodies are beautiful' movement/idea is flawed and meant for pop feminism. I'm not saying this to be dramatic or because I'm upset, but there is nothing beautiful or good about my body. We are allowed to have shitty things in this world and ACKNOWLEDGE them! My body is a barely functioning, pain causing machine. It doesn't need a flowery or motivational hashtag slapped on it. (Please don't rebutt this with 'but your brain is beautiful and it's part of your body!' because my brain is fucked DUE TO THE MD)”
While my disabled body looks a lot more “deformed” than hers & my body is sexy and disabled af, I’m in utter disbelief that this woman is using her platform to be the poster child for Euthanasia because of MD, a disease I and many people have, by sharing posts like this. I feel like this is erasing all the work I’m doing to add disability representation into the body positive movement to what she says: “These pictures further confirm my opinion that the recent 'All bodies are beautiful' movement/idea is flawed and meant for pop feminism. I'm not saying this to be dramatic or because I'm upset, but there is nothing beautiful or good about my body. We are allowed to have shitty things in this world and ACKNOWLEDGE them!”
my body looks boney and crooked and all the adjectives she used, but disabled bodies deserve to be represented in a sex&body-positive way.
I share pictures of myself in my underwear regularly that empower the hell out of me and so many because we deserve that. I don’t do this to be inspirational, I do this for representation and she’s further stigmatizing the disability body positive movement with her posts.
I took a gander at her comments and saw people who know nothing about Muscular Dystrophy thanking her for teaching them what it’s really like to have MD. Cue the biggest momental eye roll paired with face palm you’ve ever seen. I share my raw unfiltered life with a type of MD much like Holly & if that’s what people are learning from her I OBJECT. While I don’t know the intricacies of Holly’s disability because... now this part is important.. ALL TYPES OF MD ARE VERY DIFFERENT, I know that I completely despise that she’s using disability to promote euthanasia. Not everyone will use their common sense to realize all disabilities and types of MD are different, and she’s using disability to paint a horrid picture of what it is, when her case is very specific to her. I’m not here to get into a euthanasia debate because honestly that part I believe is a case by case basis, like hers. Maybe her MD is super painful and she doesn’t want to live anymore and she has that right. I’m not here to discount any mental health or physical issues she has or what pain she goes through. I fully support the decision she has made. I, myself, go through a lot with my disability and could probably make my feed look as gruesome than hers. BUT, when I see people and large platforms using Muscular Dystrophy in the title along with euthanasia and people saying that they understand the struggle of disability more after reading her content, I’m not okay with that. At all.
what if a young child or teen with disability sees her posts? her content can have very real implications.
I hope my little article can counteract a little of what has been said in her articles and show people that disabled people live healthy and happy lives and that her case is very specific to her and her own experiences.
Disability is not a death sentence.
Disability is different for everyone.
All types of Muscular Dystrophy are different.
Not everyone with a disability is in pain.
Not all disabled people want to die.
Disabled people live dope and raunchy lives AND love their bodies