Sleeping Through Life: My Experience as a Hypersomniac

When I wake up, pure unadulterated panic with a side of adrenaline courses through my body as I try to make sense of the world around me: what day is it? IS IT day? Or night? What’s happened while I’ve been asleep? Have I let anyone down (again)? Did I do anything in my sleep? Did I bear the brunt of any social media pile ons? Did someone hack my social media and out me (again)? Did I sleep through any holidays or birthdays?

I’m sure you’re reading this thinking: woah, woah, woah! Don’t catastrophize! It’s alright! You just went to sleep! It’s not like the world ends every time you go to sleep! You’re right!’re also wrong.

If you’re like the typical person, you do your nighttime routine (don’t we all have one?) throw on your PJs and you crawl between your sheets, so grateful for the sweet, fullsizerendersweet embrace of your bed. And then, ideally, you wake up 8 hours later with nothing eventful happening in between, feeling bright-eyed and bushy-tailed and ready to tackle the day….right?! Totally!

Unlike most people, when I go to bed at night, I don’t know when I’m going to wake up because I have hypersomnia (hyper = from the Greek meaning over, somnia = from the Latin meaning sleep). I need to get at least 12 hours of sleep to avoid getting sick (separate issue: dysautonomia/POTS) but I usually sleep around 14 hours a night, sometimes longer. As an infant and child I often slept 16-18 hours. My mom said that it was hard for her to do anything with my older siblings because everything had to revolve around my sleep schedule. I can’t imagine how difficult that was.

Fast forward: as a 19-year-old, I had just started seeing a guy, and my mom was supposed to come into town and I was so excited to pick her up from the airport the next day. That night I went to a party with the guy I had been seeing and the next morning I was still so tired (legitimately tired) so I took a nap at his house. My mom’s plane landed and she couldn’t get ahold of me. She was terrified. She called and she called and she called with no answer.

I finally got ahold of her over 2 days later. I had been asleep the whole time. I wasn’t under the influence of anything other than my own body. I was just so exhausted and not from anything I did. I felt so incredibly miserable when I saw my mom. She was truly distraught. She had contacted the police (obviously) who had told her I had probably just been having fun. The worst part of the whole thing was that this wouldn’t be the last time hypersomnia would cause me to scare or disappoint someone I loved…it wouldn’t even be the last time I did it to my mom. I slept through Thanksgiving when it was just the two of us and she was waiting for my call.

Hypersomnia is letting people down. It’s missing out on life. It’s sleeping through classes and exams and not being able to tell your professors what’s going on because they won’t understand and when you’ve tried in the past to be open and honest it’s backfired. Hypersomnia is depression, anxiety, stigma and people being afraid to talk about those things because maybe they’re afraid of being mentally ill and further marginalized by the medical community (and maybe there’s textsome internalized ableism there, too). It’s sleeping through your cat’s insulin…and earthquakes…and fire alarms. It’s  sleeping so long that when you try and eat you get sick because your body has gone without food and water for so long. Hypersomnia is missing out on the things that matter MOST to you, the moments you can’t get back, with people who are now gone forever…and having to reconcile that with yourself and the ones who are still here. Hypersomnia is brain fog and sleep inertia. It’s having trouble telling what happened when you were asleep and what happened when you were awake (the blurring of dream and reality.)  Hypersomnia is disability for some of us and impacted relationships for most.

Hypersomnia feels like going under general anesthesia. It’s like being drugged. When the feeling takes hold of you you can’t fight it. It’s like being dragged under water when you can’t swim and you’re tired of trying to pretend you can, you’ve spent so much time and energy pretending you can.

Yes, I spend my life sleeping. But… at the same time I spend my life dreaming, and a lot of the time, I spend my life dreaming of beautiful things, fantastical things, hopeful things.


I hope you enjoyed this post. If you did, please share it widely and comment! I’d love to get your feedback!

Question for you: do you have a bedtime routine that you do every night?


9 Everyday Phrases to Understand Ableism

 Content Warning: This post contains uncensored ableist words and phrases in an effort to educate. Some may find this triggering or upsetting. 

What You’re Really Conveying, Why It Matters, and What You Can Use Instead

9 (4)Whenever I discuss ableism and ableist language, even within social justice circles, I’m often accused of: a) attempting to be “politically correct,” b) making up a new term so I can be oppressed, or  c) trying to find any reason to be upset.

People are partially right. GASP! Ableism is a fairly new term, but the oppression predates modern history. If you’re not familiar with ableism, check out my blog post: What is Ableism?

Now…making up a term so I can be oppressed? I’m not the only one oppressed by ableism (Disabled people are represented in every other marginalized group) and ableism isn’t the only oppression I experience. I feel no need to add another oppression badge to my Social JustVest. I also don’t care about political correctness. I care about kindness, centering marginalized people, and I actually deplore most so-called politically-correct terminology (it’s developed by people in Ivory Towers with no lived experience and no attempt at consensus). And trying to find a reason to be upset? No thanks. My doctors have told me I’m not allowed to do that any more.

Basically, ableism (and its most encountered form, ableist language) is real and I have no desire or inclination to make it up. I don’t benefit from its creation, its existence, I’m actively harmed by it.

The 9 Phrases

1. “Don’t listen to her! She’s crazy!”  or “That party was crazy” or “Read these 25 Crazy Foods You Can Make!”

  • Etymology: Came from the Old Norse for “krasa” or “shatter” and then to Old English meaning full of cracks which over time led to use to describe mentally ill people.
  • Primary dictionary definition: “mentally deranged, especially as manifested in a wild or aggressive way”
  • Newer uses: extreme, unbelievable
  • Message sent: “crazy people aren’t to be believed” or “crazy looks like extremes”
  • Commentary: Why not just say unbelievable or find a better word to replace extreme instead of bringing in a word that’s been used to oppress the mentally ill? This quote from Daniel Jose Older’s Shadowshaper really explains it well: “Crazy” was a way to shut people up, disregard them entirely.” People have never stopped using crazy in a negative way to degrade, silence, and control mentally ill people. Non-mentally ill people may say that it’s just a word, but this is a word with a long history of oppression, and to try and erase it or sanitize it so you can use it in place of “very” or “extremely” instead of choosing a different word is inconsiderate at best and deliberately harmful at worst!
  • Alternatives: unbelievable, extreme (or replace the whole phrase), amazing, incredible, unlikely,
  • Note: When coming up with alternative words for crazy, if you’re trying to describe another person’s mental health, reconsider. Is it your place? Is it necessary?


2. “The economy was crippled by the recession”

  • Etymology: “to creep”, it’s been used to describe Disabled people since the 1300scrippled-america-9781501137969_hr
  • Primary dictionary definition: “unable to walk or move properly; disabled.”
  • Message sent: “I consider it a negative thing to be crippled (Disabled) so I use it to describe an economic catastrophe”
  • Commentary: Yes, more definitions have been added to “crippled” but what makes it ableist is that people are using a word historically associated with disability and using it as a negative, as though disability is inherently negative.
  • Alternatives: ruined, tanked, debilitated, destroyed, and devastated


3.“We turn a blind eye to atrocities”

  • Primary dictionary definition: “unable to see, sightless”
  • Message sent: “I consider blindness a choice and that it’s appropriate to use blindness as a metaphor. I think that blind is synonymous with willful ignorance.”
  • Commentary: Again, there are additional definitions, but using blindness (or deafness) as a metaphor for people’s deliberate horrible behavior, making a comparison (unwitting or not) between blindness and ignorance is unacceptable.
  • Alternatives: ignorant, ignore, apathetic, uncaring, unaware, uninformed,


4. “Stop treating me like an idiot!”

  • Historical definition: like with imbecile and moron, idiot was an actual medical term used to categorize people with “profound intellectual disability”
  • Primary dictionary definition: “a stupid person”
  • Message sent: “People with intellectual disabilities are treated as less than human and you’re treating me as less than human and I don’t like it because *I* deserve better, since I’m not *actually* intellectually Disabled.”
  • Commentary: Words like stupid, idiot, moron, dumb, and imbecile are all words that are used to specifically oppress people with intellectual disabilities. They’re also used against developmentally and cognitively Disabled people. These words have power. They were once a medical diagnosis and today they’re used to dismiss and harm. They’re used to establish a hierarchy of worth. “Praise your kids for their intelligence!” “There should be an IQ test to run for government office!” “The world would be a better place with fewer stupid people!” As though the problems in our world are created by those with intellectual, developmental, and cognitive disabilities and NOT those with privilege and therefore power. As though intelligence is the solution and not kindness and respect. You may argue that you’re not talking about “actual” Disabled people when you use this language, but you’re still creating that hierarchy and you’re still creating a society that devalues Disabled people. Like I said in previous blog posts, your words have a ripple effect. Create a positive ripple.
  • Alternatives: use words that don’t relate to intelligence as a measure of worth.


5. “But you don’t look sick/disabled!”

  • Message sent: “I think there’s only one way to look sick/disabled” “I’m unknowingly invalidating your lived experience.”
  • Commentary: This is usually a case of intent vs impact. You may not intend to offend the person, but your intention is pretty irrelevant here. Often times, when someone doesn’t “look” sick/disabled that means they’ve had to struggle to get accommodations and a diagnosis. It means they’ve been dismissed, harassed, and accused of faking. There is no one way to look sick or disabled. Maybe you’re trying to compliment the person but try a different way because being Disabled is part of our identity and being dismissed isn’t a compliment, it’s a reminder of our constant struggle to be taken seriously socially and in a medical environment. It also reminds us that society has an incredibly rigid idea of what sick and healthy, Disabled and non-Disabled looks like and this concept prevents people from getting the help they need, often times, until it’s too late.
  • Alternatives: let the person know that they look great if that’s what you’re trying to get across


6. “The weather is so bipolar!” or “One second I’m mad and the next I’m sad! I swear I’m bipolar!”

  • Message sent: “I don’t actually understand what Bipolar Disorder is and instead of taking a few minutes to find out, I’ve decided to make light of a serious mental illness that affects the quality of life of millions!”
  • Commentary: Bipolar Disorder is not feeling mad one second and sad the next. It’s periods of (hypo)mania and depression. Yes, bipolar can be used appropriately as aHi!n adjective in certain contexts (for instance chemistry or geography), but using it as an adjective in the mental illness sense in a way that seems to downplay others’ actual reality and furthers people’s misunderstanding of Bipolar Disorder. It contributes to stigma, fear, and it spreads misinformation. However, if you have Bipolar, and you’re describing your symptoms or reclaiming, there’s nothing ableist about referring to yourself as bipolar.
  • Alternatives: unstable, mercurial, volatile, unpredictable


7. “Stop using that as a crutch!”

  • Primary dictionary definition: “mobility aid that transfers weight from the legs to the upper body. It is often used for people who cannot use their legs to support their weight”
  • Newer use: an excuse
  • Message sent: “I consider a crutch a weakness or an excuse. People should be able to get by without mobility devices!”
  • Commentary: Just really think about the message sent here and how it affects people who need crutches to get around. It plays into the idea that Disabled people, including mentally ill people, use their disabilities as an excuse if they show weakness or if they need accommodations.
  • Alternatives: the phrase is just unkind and confrontational in general, rethink


8. “He stands up for what he believes in!” or  “Stand with those affected!”

  • Primary dictionary definition: “to support oneself on the feet in an erect position”
  • Idiom definition: “confront fearlessly” “to refuse to compromise””to defend” “to support” “an expression of strength”
  • Message sent: “I believe that strength and support is synonymous with abledbodiedness and the ability to stand.”
  • Commentary: I’m sure some will argue this is “nitpicking” but when every expression having to do with disability is somehow a negative and every expression having to do with abledness is considered a strength or a virtue, I don’t think that’s a coincidence. The words we use to describe our world help construct our reality. We need to be more intentional.
  • Alternatives: Solidarity with, support, together with


9. “You can’t hang out? Lame” or “That movie wound up being so lame!”

  • Primary dictionary definition: “(of a person or animal) unable to walk normally because of an injury or illness affecting the leg or foot.”
  • New Use: “uncool”
  • Message Sent: “I think disability is uncool”
  • Commentary: Most people who use the word lame in this way aren’t aware of the definition or history, but that doesn’t make it okay. The reason the word lame has the negative connotation it does is because of it’s original definition. Because in abled society, disability is considered negative. Many of us have stopped using gay as a pejorative. It’s time to do the same with lame and words like it. It has the same effect on Disabled people.
  • Alternatives: ridiculous, bananas, shit, what a letdown, sad, fudge muffins, crap, craptacular, craptastic


Words That Describe Abledness and Disabledness

Maybe you’ve noticed through reading this blog post the massive double standard in how we describe abledness vs disabledness and the words we associate with each. Abledness is associated with strength, conviction, morality, independence, values, ability and overall has a positive association. Disabledness is associated with weakness, helplessness, feebleness, lack of fortitude, codependence, neediness, inability, and overall has a negative association. All of the words and phrases listed above associated disability with negative qualities. How do you think that affects Disabled people? When you use the words that describe disability as a way to insult someone, (Disabled or abled), don’t you think that impacts Disabled people, and more importantly, don’t you think that very clearly describes the ableist society that we live in that it’s so widespread and acceptable?


Coming Up With Alternatives

Autistic Hoya has an excellent guide to ableist language with a list of alternatives but I also think you need to be personally thoughtful. Stop. Take a moment. What are you trying to express? What’s the point that you’re trying to get across? Too often we rush to communicate and that’s when we use language that’s harmful. When we take the time to think about the people around us and the impact of our language, that’s when we make better choices. I doubt you really think that the party you went to was “crazy” or that the person’s eye was “blind”…try to express what you really mean. Be intentional in your word choice and you’ll notice a difference not only in reducing ableist language, but in communicating more effectively.


Are You Being Ableist?

There are times when someone might use an ableist word and not be ableist. And there are other times when someone could use a seemingly benign word and be ableist. Here are some questions to ask yourself to help determine if you’re being ableist (this is just a guide):

  1. Are you using a word associated with disability?
  2. Are you using it to mean something negative?
  3. Are you Disabled yourself?
  4. Are you in a position to reclaim that particular word?
  5. Are you using it in a reclaiming way (not as a way to disparage others or in a way unrelated to the definition)Is It Ableism- (2)



Language is a part of culture. Please help create a culture that values Disabled people. We deserve better.

I hope you found this educational or helpful in some way. If you did, please share it widely, comment, and like!





What Is Ableism?

Content Warning: This blog post deals with ableism and may be upsetting or triggering to some people

Naming the Problem

You would think that writing about something that you experience every day would be 19120948.jpgeasy. Every time I’ve tried to write about ableism, my mind starts whirring and spinning and trying to go in every direction all at once. I’ve written 10 drafts and none of them have been right or linear and none of them have captured the lived experience of ableism. Bear with me…


Ableism. One word. Three syllables. But with it, we can name the problem, we can begin to address the problem.

So what is it? Let’s start with some existing definitions of ableism.

Defining the Problem

  1. From Wikipedia: “…discrimination of individuals with physical disabilities or deformities, resulting in discrimination or social prejudice against people with disabilities.”
  2. From Merriam-Webster: “discrimination or prejudice against individuals with disabilities.”
  3. From StopAbleism.Org: “a set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities.”

So…aren’t these definitions enough? I think they’re a wonderful starting place. Both Wikipedia and MW address the discriminatory and prejudicial aspect of ableism but where Wikipedia makes the mistake of specifying that ableism is only for individuals with physical disabilities and visible differences. StopAbleism.Org’s definition is fairly complete but all of these definitions are addressing the individual.

For something to truly be an “-ism,” it’s not just about the individual, it’s about society and power (see my blog post on privilege and oppression). In fact, the very suffix  -ism denotes practices, principles, and doctrines. Ableism isn’t just about how we treat individuals but rather how we view and treat Disabled people/people with disabilities on a societal level and I believe it’s crucial that a definition incorporates this. I would offer the following definition:

“the societal devaluing of, as well as oppression of, Disabled people/people with disabilities and those that are perceived to be disabled, including those with mental, physical, emotional, intellectual, and developmental disabilities and illnesses. We carry out this devaluing through discriminatory practices on an individual and institutional level.”

You’ll also note that I included people who are perceived to be disabled in the definition. I think of it like this, if you’re throwing a large stone at an object in a crowded lake, you may be intending to only hit the one object, but the people in the lake will feel the ripples from the stone, regardless of your intentions to only hit the object. That’s how I feel about ableism that’s not directed toward a Disabled person/PWD. I can hear a person yelling an ableist slur at someone near me who is non-Disabled and it still affects me, even if I wasn’t the target.

Ableism in Action

Ableism at the Institutional Level

Some of the ableism at the institutional level has intentionally been built into the system. Other times, the ableism is unintentional, an unplanned consequence (or it’s something that’s individual and not built-in). The people in power in government are overwhelmingly non-Disabled (and privileged on most axes) and Disabled people/PWD are at best an afterthought.

Here are some examples of intentional vs unintentional ableism in different institutions (I apologize for the overlap):

Institution Unintentional Intentional
Health Care Majority opposition to universal healthcare hurts Disabled people the most Deliberately long process to get Disability
Polling non-Disabled people for healthcare decisions that will affect everyone Disabled people aren’t viewed as capable of making own decisions regarding healthcare
The Baker Act
Decisions regarding Right to Die are based on tragedy of disability
SSDI forces people to live in poverty
Government Cuts in voting locations making lines longer so Disabled people are unable to vote (unintentional?) Not making government meetings accessible to Disabled, DDHOH, and Blind people
Candidates for public office not considering the DisCo an important constituency
Cutting programs for Disabled people
Education Disabled students not represented in course materials Buildings and classrooms that aren’t accessible (may be grandfathered in)
Forced integration or segregation
Universities that don’t accommodate absences due to disability or illness
Physical requirements (FitBits at universities) or with interaction with peers that are graded
Media/Sports Assumptions about athleticism of Disabled athletes vs. non-Disabled athletes Unequal airtime for Paralympics, Special Olympics
  Not allowing banned medication for any reason
Non-Disabled people winning awards for portraying Disabled people Lack of disability representation in the media (especially diverse (BILAPI, size/shape gender, age, etc.) Need for most marginalized to be centered
Focus on health as goal Forced BMI for models
Employment Assumptions about how qualified a Disabled person is vs. a non-Disabled person Making doctors disclose mental and physical illnesses in order to receive state credentialing, regardless if accommodations are needed (seen as a liability)
Paying Disabled employees a subminimum wage
Policies regarding sick leave
Not wanting to hire someone with a pre-existing health condition because of health insurance premiums
Transportation & Infrastructure Attitudes of public transit passengers toward wheelchair users (burden) All public buses not being equipped with a wheelchair ramp
Sidewalks not being maintained properly (especially in winter) or graded properly) Prioritization of strollers over wheelchairs
Crosswalks that aren’t accessible and safe for blind people and people with low vision


Ableism at the Individual Level

Ableism-It’s easier for me to explain ableism using personal, specific examples. My experience is different from most perhaps, because I spent the first 23 years of my life unaware that I was physically Disabled and chronically ill. However, I was very aware that I was mentally ill and that I had learning Disabled (which would later be properly labeled Autism).

As a child ableism was:

  • being called a freak
  • being called stupid
  • not having friends because I was “different”
  • being locked in a dark closet by my 6th grade teacher because I was too difficult
  • being bullied daily
  • having teachers participate in pranks on me
  • schools refusing to make accommodations because they were private and I wasn’t failing

As an adult ableism has been:

  • being screamed at in the street for parking in a Disabled parking space
  • having a professor call me a liar in front of the entire class when I tried to explain my diseases/disabilities
  • being marked off an exam for being physically unable to perform certain tasks
  • being failed for missing 3 labs when I was recovering from surgery and in and out of the ER
  • being forced to register with my university’s Disability Resource Center in order to remain in a class (even though they can’t provide any accommodations for me)
  • having to constantly prove I’m Disabled enough to require assistance but not too Disabled to be “of use” to society
  • asking for help with my bags from a flight attendant and being made to prove my disability, and then refused help
  • getting dirty looks when I don’t let my 61-year-old mother take a seat and take it instead
  • being refused adequate pain medicine because doctors are more concerned about tolerance and addiction than my quality of life
  • having messages of “health” forced down my throat by the media when it’s not attainable
  • being told I would be better dead than alive and non-vegan or vegetarian (impossible due to my health conditions)
  • having to leave university because there are no systems in place for people like me and I’m at the whims of ableist teachers
  • having doctors refuse to listen to me and attribute everything to mental illness…referring me to a psychiatrist for severe stomach pain that wound up being stomach and intestinal paralysis

Ableism takes many forms and comes in many experiences. It may be easy to focus on one aspect, on one story, on one person’s journey, but that will never address the root of the problem and if we ever want to eradicate ableism, we have to rip out the root and spray it with Round-Up.


I hope you found this blog post educational or found some value in it. If you did, please share it widely and comment below. I’d love to get your thoughts!

I’ll be following this blog post up with one on ableist language so stay tuned for that!



WEIGHT…Waiting to be Happy

Content Warning: This blog post discusses weight, eating disorders, body image and food.

As a very young child, I thought thinness, skinniness, would make me popular, would make the other kids like me and would make the bullying stop.

As a 12-year-old, I realized that it wasn’t just thinness that mattered but, rather, having 12 (4)the perfect body, the idealized body we see splashed across the pages of Victoria’s Secret catalogues and gracing the cover of Sports Illustrated Swimsuit Edition: the hourglass body with perky “natural breasts,” a tiny waist, toned arms, a flat, lightly toned stomach, and a tight butt with sculpted legs.

I used to hold my hands so carefully, trying to still the tremors as I cut out Gisele Bündchen’s photo from the pages of Victoria’s Secret to be used as my inspiration to lose weight and work out harder, back when I still could. I’d clip certain phrases from the magazines like “pounds,” “work-out” “body”… all in the hopes that I would resist my body’s natural desires to eat food that made me happy and that I would go a day without self-loathing.

I used to think that if I weighed 145 pounds (my goal weight for years, scribbled furiously in my journals when I was at my most desperate to be loved and accepted) if I just didn’t have love handles…if my arms didn’t jiggle so much when I moved and if my thighs didn’t shake and rub together when I walked…I’d be happy. I’d be free to enjoy life. So I’d restrict my food intake some days. I’d deny myself foods that I loved, and I’d work out hard sometimes. I’d ignore the massive warning bells clanging loudly in my head, telling me: THIS PAIN IS NOT NORMAL! I was in a competition with my body, my mind, my spirit to love myself. If I just got to my goal weight, I could rest. I could love myself.

I weigh 123 pounds today (I’m 6’0) and sometimes my weight drops lower.FullSizeRender (6)

Those love handles that I fought so hard to be rid of? Those are gone. That “arm flab?” That’s gone, too. I also have that coveted thigh gap. That’s certainly not all it’s cracked up to be.

I cannot work out, even though yoga actually brought me a lot of joy and relaxation and cycling was a great way for me to let off steam.

My diet is permanently restricted and I can no longer eat my favorite foods, or most foods.

I spent so much of my life wanting to be 145 pounds, thinking it would bring me happiness, and now that I’m this thin, all I can think is…why did I waste so much of my life thinking a number on a scale would bring me happiness? Why wasn’t I eating the foods I loved when I could? Why was I wasting my life trying to change myself? Why did I spend so long hating myself? Hours spent in the mirror pinching “fat” and measuring and finding flaws that weren’t there instead of loving the beauty that was.

I hope you can learn from my mistakes, my decades of self-loathing and wasted time. Eat what makes you happy. Focus on what you love about yourself, not on those flaws companies benefit from manufacturing. Spend time treating your body with love. Try and love yourself. It’s not easy, not in our society. Self-love is an act of defiance, it is a battle cry.

I hope you enjoyed this blog post. If you did, please comment, like and share everywhere!





#LiveBoldly…Unless You’re Disabled?

CONTENT NOTE: This post will contain spoiler alerts for the book and movie Me Before You. It will also be dealing with (assisted) suicide, depression, and ableism.¹

The Lie of Living Boldly and Me Before You

I have been avoiding blogging about Me Before You, most likely because it hits me in a place I try and hide from others. I have sobbed in the shower and screamed into my pillow over its existence and the praise it has already received; over the willful ignorance of the author (Jojo Moyes), the cast, and the general public surrounding issues that affect my life and the lives of hundreds of thousands of individuals in the disability community.

Me Before You is being touted as the “love story of the summer” and the “romance of the summer” (that’s according to the movie trailer and the sponsored ads). Long, horrifying story short:

“Successful” rich man (Will) with everything going for him is in a “tragic accident that leaves him paralyzed.” And his paralysis convinces him life isn’t worth living. Will needs a caregiver so enter Louisa who is the savior who teaches him that life can be worth living…but not really…so Will decides to commit suicide and leave much of his wealth to Louisa so SHE can #LiveBoldly and he won’t be a burden to anyone.

The Problems with the Book & the Casting

  1. NOT JOJO MOYE’S STORY TO TELL: First and foremost let me say that the author of this book turned screenplay is abled-bodied and healthy by her own admission. She has never met a paralyzed person. My absolute biggest criticism of this book and the movie is that this was not her story to tell. This topic requires in-depth knowledge of the community, it requires some level of lived experience, and it requires a sensitivity to the far-reaching implications of the work and the people harmed. Jojo Moyes lacked all of these attributes.
  2. LOUISA AS THE SAVIOR: This is ableism in action. Instead of Will being the hero of his own life, Louisa is brought in to “save” Will from himself and to “heal” him (because Disabled =broken).
  3. FAILURE TO ADDRESS ABLEISM IN SOCIETY: Will was active and happy before he was “tragically injured in an accident” and now he believes he can’t do what he loves, he can’t be who he was because of a wheelchair. (I’ll be honest, this is a phase that some wheelchair users and PWD/Disabled folks go through, it’s an adjustment for those that aren’t born disabled.) But the reason Will believes *he* can’t enjoy his life anymore (he can), is because of pervasive ableism built into our society that has cemented in most of us that we need to be abled in order to be whole and happy. This is an issue Ms. Moyes never addresses because it’s an issue she isn’t familiar with. She’s made this an individual struggle, a relationship story, a family battle, but not a societal issue.
  4. CASTING OF AN ABLED-BODIED ACTOR AS WILL:  There are Disabled actors, including physically Disabled actors that could have played the role of Will and brought so much more to the role. I see Sam Claflin, the actor who is playing Will everywhere now. So easy to cast aside that wheelchair when the filming is done, after you’ve harmed so many PWD/Disabled folks portraying a reality you don’t live and don’t understand. Do you think he’s noticed how inaccessible all the venues he’s graced for red carpet premieres are? How many interviews he wouldn’t be able to attend if he came in his wheelchair? But it’s just a prop for him.
  5. LACK OF APPROPRIATE HELP: Typically, when you find out someone is suicidal, you get them qualified mental health care, if you’re able. In the case of Will and his family, we know that he is able to access great health care (he has the money and the connections). But for some reason, the family and Louisa never get him into see a therapist or a psychiatrist or any kind of mental health professional. Will’s own mother agrees to “let” Will kill himself but only if he lives for six more months. Why doesn’t she make him promise to seek help, since she’s coercing him anyway? Why is it that all of these people in Will’s life believe that suicide is a reasonable and rational response to a non-progressive, non-fatal condition?  Why aren’t they willing to get Will help to treat his depression or even acknowledge that he has depression? Quote from the book:Of course he’s miserable. He’s stuck in a bloody wheelchair!” Basically: of course a Disabled man is miserable,  HE’S DISABLED! Let’s use his misery as a plot device for abled-bodied Louisa so she can learn! She can take him on adventures! But heaven’s no! Don’t actually get him into see anyone who might actually be able to help him. This just clearly illustrates how unaware the author is when it comes to depression and disability. When all of the characters in your book hold deeply ableist beliefs and there’s a plot issue a mile-wide that screams “Better dead than disabled,” there’s a good chance the author holds some of the same views.
  6. WILL AS A RESOURCE: Will serves many roles in Me Before You: he’s the tragic plot device that drives the story, he’s a source of inspiration (inspiration porn) for those around him (bitter cripple though he is, he’s a means of distraction for people in his life, and he is the sacrificial lamb/cash cow for Louisa. Oh of course Louisa doesn’t think of him that way, but the reality is, everyone is using Will. (There’s a bit of twisted Christian allegory in all of this: Will feels useless in life because he’s Disabled and he decides to sacrifice himself so that those around him can have a better life). The bigger picture for Disabled people and marginalized people in general is that often, we are used simply as resources, when we are considered “useful” at all, so it’s interesting and also infuriating to see how a Disabled man is treated as only a resource by the people who claim to love him and by the author herself.

My Perspective

Things that inform my opinion: I am physically Disabled (not a person with a disability). I have several disorders and conditions including an incredibly painful degenerative disease. I was once a caregiver for a man with Lou Gehrig’s Disease and I became very close to him. I’ve worked with Disabled kids. I’ve lost friends to disease and disability. I’ve met with a wide range of wounded warriors. I’ve studied psychology extensively. I am a Disabled activist.

My Critiques of Critiques

  1. “WILL ISN’T LIKABLE”: Some PWD/Disabled people aren’t likable. That doesn’t mean that we don’t deserve to be treated with basic human decency and respect. Yes, he’s angry and bitter at times. I’m often angry and bitter. Like I said previously, there’s an adjustment period.
  2. DISMISSAL OF DEPRESSION:  (In community) It’s clear to me that Will is struggling with depression combined with a serious lack of support. But I’ve seen a lot of people say that he has no reason to be depressed because he can still work and do so much that he used to do, as though depression is logical. Yes, he can still do a lot, but that’s like saying someone isn’t actually Disabled because they’re “able” to do so much. It doesn’t make sense and it’s harmful.
  3. “DISABLED PEOPLE DON’T WANT TO DIE”: Do most PWD/Disabled people want to die? No. But is there a percentage that do? ABSOLUTELY! (And for those that DO want to die, it’s a last resort, unlike with Will.) I don’t know how we balance the needs and wants of everyone within the disability community, but I do know that we shouldn’t discount some needs to make blanket statements because they make us look better as a group. Some of us *are* suffering and do want it to end and it has nothing to do with the societal ableism that constantly tells us we’re better off dead than disabled. Those wishes (somehow) need to be respected.
  4. RESPECT OF BODILY AUTONOMY: I’m big on bodily autonomy² and it’s something that I’ll be blogging frequently about in the future, but something that’s been bothering me both with Me Before You and in people’s discussion surrounding it is that no one seems to want to respect Will’s bodily autonomy. As a very thin Disabled woman who’s also mentally ill (and Autistic), I often feel that I have no bodily autonomy.


I am profoundly disturbed by Me Before You.

Imagine taking something you have no connection with, no passion for, something that keeps people up at night and eats them alive, and using it as fodder for a romance novel. Imagine! Imagine creating a down-on-her-luck but looks-on-the-bright-side gal as the hero to a bitter angry cripple. Imagine writing a romance novel that confirms the worst fears of thousands (if not more) of PWD/Disabled people…that they are burdens, and that the most noble, most romantic sacrifice they can make for their loved ones is to kill themselves. IMAGINE!


Thanks for reading! If you enjoyed it, please comment below and share!


¹ableism: societal oppression of PWD/Disabled people and people perceived to be disabled

²bodily autonomy: total control and rights over one’s own body


8 Reasons I Prefer Identity-First Language

Or Why I Hate Person-First Language


What Is Identity-First Language? Person-First Language?

What is identity-first language? Well, you use it all the time when you refer to yourself as an American woman, man, person, etc. Or when you call yourself a Black parent. But when I’m discussing identity-first language, I’m using it as a counterpoint to person-first language, which is almost always used strictly in the disability community. When someone uses the phrase “a person with a disability” or a “person with Autism” they’re using person-first language. Many disability studies courses and non-Disabled disability advocates think everyone should use person-first language when discussing disability.

So…Why do I prefer identity-first language?

1. Person-first language separates me from my identity

When you use person-first language, you are literally separating me from my identity, deliberately distancing me from an integral aspect to who I am. It feels like someone is dissecting me.

2. Person-first language is hypocritical

Using person-first language for Disabled people is incredibly hypocritical because it is almost always used solely for Disabled people.

People insist on calling me a person with a disability but call me a white pansexual single American woman. If you insist on using person-first language, call me a person with whiteness, with pansexuality, with singleness, with American heritage.

3. Preference matters

Too often, someone completely ignores what I wish to be called because they’ve learned somewhere that all Disabled people want to be referred to as a “person with a disability.” They think they’re being a good “ally” (another term I object to) but in reality they’re refusing to place my real needs above what they’ve learned in their Ivory Tower or from some other Disabled person with a different lived reality from my own.

4. Person-first language & respect

There’s this idea that we’re given more respect if we separate our disability or disabilities  from our personhood, that the more distance we place between ourselves and our disability, the more respect we’re given. This very idea is rooted in ableism.

Also important to note is that whether I’m called a Disabled person or a person with a disability, I am treated with the same level of disrespect.

5. Ability to be acknowledged as a “person first”

I think it’s disingenuous for people to refer to me as a person with a disability, to refer to me as a person first, when they don’t actually consider me a person first. This is even more of an issue when it comes to my Autism. People don’t separate me from my Autism so to pretend to in order to be politically correct or to give the appearance of acknowledging my personhood is the height of insincerity.

I’m sure that some Disabled people are considered “people first” but historically we haven’t been considered people first nor do our laws/ordinances reflect this thinking. There’s a city ordinance still in effect in regards to Disabled people that is listed under cats and dogs. When people continue to separate our disabilities from our personhood, they aren’t thinking about how our disabilities impact our personhood and how its viewed by others.

6. Needed reminder of humanity?

My friend Eb on Twitter worded it best, people shouldn’t need to use person-first language in order to be reminded that we’re human beings deserving of respect and rights and that we also have other identities.

7. Accommodations as an afterthought?

I think that when people insist on saying “but you’re a person first!” and that people don’t acknowledge my disability first, that can lead to accommodations being an afterthought. When folks continue to separate my disabilities from my personhood, they aren’t thinking about what accommodations I need because they’re too busy trying to NOT think about my disabilities.

8. Pride in identity-first language

Many Disabled people are wary of claiming the label of Disabled due to stigma and ableism. It takes us months or even years to come to terms with our reality so when we finally do claim it, let us claim it how we see fit (if that means you prefer person-first language, that’s fine with me)!

I find power in being able to say that I am a Disabled person, that I am an Autistic person! No tiptoeing around, no carefully worded phrase that gently leads you to the conclusion that I am, in fact, one of those people. It’s immediately out there and in your face, much like some of my symptoms.


As always, I welcome respectful discussion and questions and if you found this post educational or interesting, I hope you’ll take the time to comment and share it on social media!

That’s all for now!