- Cure SMA: When Insidious Abuse Hides Behind A “Cure”
It took me until my mid twenties to realize that I have been in an abusive relationship my entire life. The wild part is that this abusive relationship has been with a nonprofit organization.
Cure SMA is the most widely recognized charity for my specific disability, Spinal Muscular Atrophy. When I was diagnosed in the 1990s, resources for parents of children with SMA were sparse, and at the time this organization was called Families of SMA. Since then they have changed their name to Cure SMA, and have doubled down on their path for a “cure”. Their mission statement reads: “Cure SMA leads the way to a world without spinal muscular atrophy, the number one genetic cause of death for infants.”
When I was growing up, my parents were connected to Families of SMA. They held onto every word they said, because they didn’t know anyone else with a child with SMA. Cure SMA painted a picture for my parents that couldn’t be erased. They told them that their child was a tragedy, that I would amount to nothing, that they needed support to cope with my existence. This narrative is violently and insidiously ableist, and has led to much abuse.
Before bed every night, my parent would tell me to “hope and pray for a ‘cure for SMA’”. This language that filled my household was straight out of their handbook. Unfortunately, in my case, this led to extreme caregiver abuse that almost killed me. While Cure SMA didn’t cause my parents’ abuse, it’s not a stretch to say that they had a hand in it when they created the sole narrative of my life and worthiness that was violent in nature.
It’s now 2020, and their messaging hasn’t changed. If anything, it’s gotten worse.
Cure SMA’s sole mission is to eradicate SMA. One of their core values reads: “Determination: Our work is not done until we have a cure, and we’ll remain strong in our fight no matter what challenges come our way.” My existence doesn’t need a cure. My genetics don’t need to be eradicated. This line of thinking is terrifying, and mirrors fascist ideology. If that doesn’t scare you, I’m not sure what will.
They call it a disease as if it’s something to be despised, as if it’s contagious. I am now in my late twenties and I am unpacking the ableism I was raised in, and it has taken me a lot of therapy to work through the image that this organization has raised me in. Since there weren’t any other spaces for kids with SMA, Cure SMA created the culture that decided what my life was worth. They decided that it was something to be sad about. They decided it was something that should be erased. They decided that my parents’ pity was more important than my celebration.
They used my image for fundraising to end my disability and perpetuate propaganda against me; they still try to. The propaganda has worked. They raise over a million dollars yearly, and while the treatments they help fund are of use, we can’t keep ignoring the psychological damage it has cost. Their sole focus was to fix me, change me, and cure me, rather than accept and celebrate me. I’m only now beginning to unpack what this did to me as a child. I’m seeing the parallels between this organization and an abuser, and I’m realizing the image it gave me which put me in harms way more often than not.
We aren’t teaching children who are growing up with SMA to value themselves. Cure SMA is still shaping the narratives, and it is still telling kids they’re tragic and worthless. I understand that in the 1980s and 90s, treatment for SMA was less developed, and many children with SMA did die. However, many didn’t, and things have changed since then. We’re not dying, and even if we were, that doesn’t mean we don’t deserve dignity. That doesn’t mean our parents’ respect is worth more than our own. That doesn’t mean that our disability is a disease, SMA is part of the human condition. SMA is a part of me.
The structural workings of Cure SMA are equally ableist.
Not only does Cure SMA fail to hire individuals with SMA, they don’t even value us as proper volunteers. In 2018, I decided to attend an event that Cure SMA was hosting because I wanted to hear from a specific speaker that was presenting. At the event, I was extremely uncomfortable and triggered the whole time by the attitudes around me as an adult. I asked some of the staff why there weren’t disabled people presenting, working, or volunteering at this event. They took my info and asked me if I’d like to “share my story of overcoming SMA.” My entire life, Cure SMA has been more than willing to use me for inspiration porn, but they have made it abundantly clear that my voice does not matter.
Cure SMA has single handedly perpetuated the infantilization of my disability; turning me into a child and refusing to value my voice and experience at any capacity. You would think they would be excited to have a volunteer with five years of event planning under their belt, but instead they wanted me to continue to be their poster child well into adulthood. The disabled community has been shouting, “Nothing about us without us” for decades, and Cure SMA has no interest in involving us with any respect or value. They will continue to promote ableist ideas that devalue our existence. They will continue to spew ableist propaganda in favor of parents because it will get them more donations. Speaking of donations, their tax forms might surprise you as much as the abuse a seemingly well-meaning organization has caused.
I understand that Cure SMA has helped families who are struggling with coming to terms with their child’s diagnosis, but even abusers are capable of making you feel good at times. I wonder how these families would feel if they were told their child will thrive instead of die. I wonder how much of Cure SMA’s strategy has been to shock grieving parents into donating. Parents are victims as well here.
Cure SMA is dangerous, and an abuser. They fit some of the classic signs of psychological abuse perfectly. Including, but not limited to: humiliating or embarrassing you, constant put-downs, hypercriticism, refusing to communicate, ignoring or excluding you. I have tried to deal with this insidious ableism privately. I’ve emailed Cure SMA on multiple occasions, hoping to have a conversation, but they only shut me out. I’m not the only adult with SMA in the same boat, but I’ve had enough.
Dear Cure SMA,
We need to break up.
This relationship has been abusive from the beginning.
I didn’t choose to be with you, but you’ve put me in harms way my whole life.
Despite unsubscribing from your emails, trying to talk you down, and pleading for my own value, you never seem to go away.
You creep in and publicly humiliate me.
You refuse to talk to me directly, and criticize my pleas for you to stop relentlessly.
You’ve gaslit me my entire life, and shaped the way I was raised in this world.
You may have sent me gifts from time to time, or put on a face as if you’re just trying to help, but you’re simply narcissistic and abusive.
You have a hand in my trauma, my narrative, my self image.
I’m taking it back, and I won’t stop fighting to end this harmful narrative.
I won’t stop until you include the very people you claim to help.
I won’t stop loving SMA, despite how much you tell me to hate it.
I’m taking my narrative back. I’m loving my disability. My life is not a tragedy.
- parents of disabled kids.
When I was a child, people would often say things to my mother about having a daughter with a disability. They’d pity her, tell her how strong she was, or tell her how great of a mother she was simply for having a daughter with a disability. They knew nothing about her parenting, if she was a “good” parent or not, just that her daughter was in a wheelchair. She played into it every time.
Why does giving birth to or caring for a disabled child equate sainthood?
I’m going to go out on a limb and say this right off the bat:
You are not special for taking care of your disabled child. You’re just a parent, like every other parent.
I’m not denying the fact that having a disabled child often comes with a different set of challenges, accommodations, or care, but I don’t think it’s helpful to congratulate parents for being parents that take care of their children. Every child has their own set of challenges, and different does not mean worse; disabled does not mean worse. It should not be the exception for a parent to take care of their kids. It should not be heroic. In a perfect world, all parents would care for their kids regardless of ability, and I won’t praise you for not neglecting or abusing your child. Regardless, many parents of disabled children are abusive, and I think congratulating parents of disabled children for existing can be harmful.
I’m sure reading that last statement makes you cringe, or get angry, because there’s no way parents of disabled kids are abusive, at least not at large. Their lives are so much harder than average parents, and they mean well. They’re doing the best they can.
It’s true—many parents of disabled children are probably doing the best they can. However, sometimes the best still isn’t good enough when power dynamics come into play.
A caregiver relationship is breeding ground for abuse. Not only do parents have physical power over their disabled children, especially if the disability is severe enough that the child is nonverbal or immobile, but they have all of society on their side. No one will question them as a parent; they can do no wrong. Everyone, from strangers to systems and even other parents, are telling them how wonderful of a parent they are. They support nearly every decision they make without question. Furthermore, ableism is on their side. It’s easy to make choices for your disabled child, remove their consent, abolish their privacy, dignity, and autonomy, because the rest of society often does too. Things that would be considered abusive for many kids are not viewed the same way for disabled kids.
I recently made a post in a support group for parents of children with my type of muscular dystrophy that has over 10,000 members, in which a handful are adults with the same disability themselves. More often than not, I saw parents post graphic photos of their children under the disguise of either asking for help or sharing to help others. While I fully support reaching out to a support group to ask for help or share what has worked for you, a photo of your disabled child with a bloody face, vomit all over them, or mucus coming out of every hole is disrespectful of that child’s dignity and privacy. No one wants a private moment shared for thousands of strangers to see, and frankly, most of society would be appalled if a parent posted such photos of their able bodied child. Unfortunately, exploitation of disabled children is a common act, so it wasn’t questioned.
I finally worked up the courage to ask the group if we can be mindful before posting photos, as the Internet is forever and these images will affect the child’s self image. I explained briefly that they will already have to fight hard enough for their privacy and dignity as is without parents adding to it, and how these acts have affected my self worth personally as an adult who grew up with the same disability as their children. Quite a few adults echoed my feelings on the subject.
I knew when I posted this suggestion that it would not be received well. Anytime I have questioned the parenting of a parent of a disabled child, I have been met with bewilderment, rage, and an entitlement that cannot be broken. I have been insulted, belittled, and attacked by hundreds and hundreds of parents for asking that question alone. They also attacked every other disabled adult who spoke up, claiming that their place as an able bodied parent outweighs those who live with the disability. I’ve found that parents of disabled children often think they have the right to use their child and their story however they see fit, to a fault, even if it rips the child of their autonomy and individuality. This is blatant ableism, and unfortunately, psychological abuse, but these attitudes can lead to much worse.
In my own life, I was faced with more severe abuse from my caregiver. Without going too into detail (because my own privacy matters as well), I was neglected and left without care more often than not. I was physically and verbally abused by my parent, while no one questioned it because my mother was a parent of a disabled child. I would show up to school late every day, severely malnourished and sleep deprived, and no one bat an eye because my mother blamed it on my disability. When I was a teenager I even called CPS myself due to my mother’s drinking, and they closed my case because of my disability. My experience was never placed above my mother’s words. Everyone around me was pitying and praising my mother for parenting me, while behind closed doors she wasn’t a parent at all. In extreme cases, disabled children die because of their caregiver’s neglect or abuse, and it’s often met without repercussion. This is less rare than you may think. In fact, there is an entire website dedicated to tracking filicide of people with disabilities.
While not all abuse leads to death, people with disabilities are up to 80% more likely to be abused in their lifetime. When a survey was conducted by the Spectrum Institute Disability and Abuse Project in 2012, they found that overall a whopping 70% of participants experienced abuse by a caregiver, parent, intimate partner, or even a stranger. Abuse is even more likely with a disabled person who is nonverbal, and these incidents are grossly unreported, thus making the statistics further lacking.
I am not saying that it is always easy to parent a disabled child. In fact, wrapping your head around the fact that your child is living in a world that oppresses them is a heavy weight to bare. Teaching them to navigate a system where their rights are not respected is a deep pain; but in order to not add to the oppression, you have to believe in it. I’ve had countless parents tell me explicitly to stop talking about ableism, because it doesn’t exist; especially not in families. Unfortunately, statistics prove otherwise.
Additionally, many parents deal with hospital stays, near-death experiences, and other traumatic situations that other parents often don’t. For that, I empathize with, but this is not exclusive to disabled children. Any child can have a traumatic issue at any time, and a good parent will deal with it with love, while still respecting their child’s dignity, autonomy, and privacy. Most people don’t view a family going through a rough time as sainthood, just a human experience that is hard to deal with. Most families going through rough times don’t broadcast the private moments to the world, and even if it happens more frequently, that still doesn’t make it okay. I think all in all, a great rule of thumb is to ask yourself if this would be okay to do to an able bodied child.
We’re living in a world with medical advances that are allowing disabled children to live longer and longer. Regardless, “they’re dying” is not a good argument for less dignity. There is no good argument for it. We need to protect the self worth and self image of disabled kids, so that they don’t have as many mental health crises in adulthood (I myself have extreme CPTSD from my parent), and so they can go out into the world as independent adults that know they have a right to be here and be respected, despite what the world may tell them.
I don’t think it’s radical or unreasonable to think that disabled kids should be given the same respect as any human, even down to the nuances. I think if that offends you, you have some inner-work to do.
“It took many years of vomiting up all the filth I’d been taught about myself, and half-believed, before I was able to walk on the earth as though I had a right to be here.” — James Baldwin
I never thought I was a radical until I started setting boundaries when people acted ableist toward me.
From a young age, I felt deeply that we all should treat each other kindly and with respect. It’s something I believed deep in my soul, even before I had a word for it. I will admit that no one really taught me what respect was, though. I was supposed to respect my elders, authority, rules, and everyone around me, but no one told me how I should be respected. No one taught me what it meant to respect myself. Alongside this deep belief for respecting all humans was an endless feeling of confusion. If everyone was to be respected, why was everyone so weird around me?
I have been getting in fights my entire life, and they have always been completely confusing. Although I once was a feisty, confrontational red head (and sometimes still am), these fights weren’t over anything subjective in my head. Someone would say something utterly patronizing to me, and instead of those around me standing up for me, I was met with something along the lines of, “they meant well”. When I told them that I didn’t think that was the case, I was told I was overreacting.
These fights have expanded into the disabled community. If you’ve been my friend for any amount of time, you’ve probably heard me express that most other disabled people hate me. This is for a multitude of reasons, and while I could write an entire article on this topic alone, most recently I shared in a disability support group a mindless comment that a man said to me. “Sweet chair!” he exclaimed. “Gross.” I replied, because I don’t find that to be a compliment. Suddenly, hundreds of disabled people told me that I was a monster for putting down a man that “meant well”. They went as far as to say I turned down a potential partner and that I make all disabled people look bad, because I chose to respect myself even in the smallest acts. The need to please able-bodied people at the expense of self-respect is an internalized ableism that runs deep and wide.
While a microaggression such as a thoughtless comment might not hold as much weight, the same idea has applied for much more severe acts. Without getting into specifics, I was abused throughout my entire childhood by a parent. Similarly, I was abused greatly by a romantic partner in a recent relationship. This past year I have removed myself from these situations entirely, and I’ve rid my life of many other toxic people. I’ve stood up for myself in ways I never thought I’d be capable of, and I was met with the same attitude—as well as full on rage. Even in the most audacious of circumstances. Even in the eyes of abuse. I don’t think the attitude of “they meant well”, the favoring of able-bodied people to a fault, or the outrage at my boundaries is due to the severity of the crime, rather the way in which they view me as a person.
A large part of living with a disability has to do with navigating power dynamics, since most of the world has more physical strength than I do. However, it’s not this strength that is the threat, but the perceived power over me that always is. Historically, disabled people have been one of the most isolated populations. Even now, in the twenty-first century, people are still getting used to seeing disabled out in society, and they have a hard time imagining that we’re just as successful as them, seeing as we live in a capitalistic society where productivity equals worth. We are perceived as unproductive, whether it be conscious or not. Internalized ableism runs so deep that me being disabled alone makes many people uncomfortable.
I still get told that I’m overreacting, but the older I get the more I learn that this is textbook gaslighting. It’s perfectly okay that I’m not okay with patronizing comments, unsolicited and inappropriate questions, or anything that you simply would not say to anyone else. The strange, confusing feeling in my gut is not wrong, but I have been told over and over that it is. I’ve been told that it’s not okay to object, in fact, that boundaries are not something I deserve. I get this doubly as a disabled person who is also a woman. At the end of the day, choosing to make able-bodied people more comfortable over believing my gut has led to a lot of harm to my spirit, and to be quite honest, a lot of abuse. I think even the smallest microgressions are not worth settling for. I think they say a lot about how you view me, and I don’t think those views are safe.
I respect myself a lot these days, though it took a lot of years and a lot of therapy to get here. Any ableism, no matter how slight, isn’t okay with me. Any disrespect isn’t okay with me, despite what society, my peers, and the system have told me my entire life. I am learning that this alone is radical.
- PCA Ad
Keeping this here for reference, and for rolling applications.
Personal Care Assistant and Overnight Assistant Position
I’m a 25-year-old active and independent professional with a form of Muscular Dystrophy living in the downtown Milwaukee/Walker’s Point area. I’m seeking some awesome assistants to add to my team of caregivers! I need assistance with most aspects of my personal care, cooking, household chores, occasional cleaning, running errands, going out, driving me to work in my accessible vehicle, and other various tasks in order for me to live my life independently. I’m looking for open-minded individuals to help me live my life efficiently and have fun doing it. This is a great job for college students, people with atypical work schedules, or anyone with an open mind, to gain valuable experience while making some extra cash.
More about me: I’m a freelance writer. I’m your fairly average outspoken sarcastic twenty-something chick who occasionally gets too drunk on the weekends, but makes up for it by being pathologically independent and taking my responsibilities in life a little too seriously sometimes. My life is a mix of routine and spontaneity. My average day will always involve coffee, but is usually not average at all, so you’ll never be bored working for me. My assistants are essentially my hands and feet, so if you ever dreamed of being a limb to someone, this is your chance.
Prior caregiving experience is valued but not necessary, only the ability to learn quickly and follow directions. Many of my assistants have never worked in healthcare but have a can-do attitude. Training is provided. This is a limited part-time position as my daytime shifts are generally 1-2 hours long and can vary week by week. It’s a great job to fit between other obligations. Flexible schedules are preferred, but I may be able to coordinate around your schedule.
Currently, I am looking to fill two positions for a mixture of regular daytime shifts and overnight shifts. Overnights are set at $80/night, and mostly involve sleeping, while occasionally helping me reposition 1-2 times or assisting with other needs as they come up. This is the perfect gig for a trustworthy individual who is laid back but also can be attentive when necessary.
– Able to pass a background check
– Have reliable transportation and a valid drivers license
– Comfortable with personal care
– Must be physically fit and able to lift up to 75 lbs for transferring
– Strong communication skills
– Able to follow directions
– Must be respectful and have a positive attitude
– Must be Punctual and Reliable (sick days must be rare, though occasionally swapping shifts with other assistants is fine.)
– Comfortable with pets
– Preferably a non-smoker
– Be fun!
– Generally very flexible hours
– Valuable experience
– A fun work environment
– I’m hilarious
– The group text chat for the team is full of ridiculous gifs
– I won’t be sarcastic at all *insert sarcasm font here*
– I’ll use fun emoji’s when I text you
– You’ll probably learn after-care for tattoos, as I have a handful
– I’ll teach you how to become a coffee addict, or enable yours if you have one
– You can go to Target with me and spend your entire paycheck
– We can learn how to cook tofu together (I’m a vegetarian!)
– You can help me solve the world’s problems
– Did I mention I’m hilarious?
Most of my assistants have worked for me for years and I look forward to having you join our team!
As you can probably tell, this is not your typical home healthcare job, but if you feel you would be a good fit, please email Emily Jamar a paragraph about yourself, along with what hours you would be available by replying to this ad. All applications without these two requirements will not be considered, as I’ve decided you didn’t read this far. I look forward to hearing from you!
I’ve been afraid to write lately.
Being a “writer” has always been hard for me because there’s not a clearcut definition for it. By profession, I am a writer, but I was a writer long before I got paid to do it (which is still a miracle in my eyes.) Writing is the means by which I can express myself fully and wholeheartedly, and I would do it whether the world saw any of it or not. However, some time last year I decided I was going to tell my story publicly, without censorship, and be more true to myself because I think I have an important, or at least interesting story to share. It wasn’t a decision I made lightly, but it was one I committed to fully.
It was an inspiring idea. A thoughtful, purposeful idea. A brave idea, even. One that kind of all goes out the window when you get real, unapologetic, insulting criticism from a voice that matters and proves that at the end of the day you’re not as unflappable as you’d like to be.
Even though I’d set out to write honestly, I didn’t post very often, but when I did my articles generally received positive feedback.
A few months ago I wrote a seemingly harmless post about dating with a disability, and how accepting my partner is. It was somewhat sarcastic, but mostly vulnerable and shined a light on relationships that aren’t really seen in the public eye. It was shared by the disability community widely, and overall I received positive remarks and well wishes in my journey.
Until one night when I received a phone call.
It was my aunt. For a large part of my life, my aunt acted as a mother to me, so we’re pretty close. I haven’t written much about the dynamics of my family life yet because, to be completely honest, I was afraid of the backlash I’d receive. Ironically, it would happen without me ever writing about them.
We had a somewhat normal conversation about other family matters, and just as I was wrapping up the phone call, telling her I would talk to her soon, she abruptly cuts me off and asks—
“Did you tell your grandma about a website?”
“No… I told her that I work for a website?” Her tone confused me.
“Well, your uncle Googled you, and you should be ashamed of yourself.”
Time stood still for a minute, or a decade, I’m not sure which.
Whenever someone says that they’ve Googled you, it’s natural to fear that all of your deepest, darkest secrets have been leaked onto the Internet and can be found with a simple search. Has someone blackmailed me? Could they see the poems I wrote in middle school? Is an ex-friend from kindergarten a professional writer and wrote an in-depth dissertation about how awful I am? After my stomach dropped, though, the fear dissipated because my job is largely on the Internet and I Google myself all the time. Besides a few embarrassing photos from MySpace, there’s nothing too juicy.
What followed is much a blur.
She continued to tell me how she found my personal website, and how disgusting the things I wrote were; that I should be ashamed of myself. She told me how disgusting I am, that I have no class, I’m completely unsophisticated, and deplorable. At this point, she wasn’t just criticizing my writing, but my character as a whole.
After a dozen insults, I only heard white noise. At first I was just utterly confused, but the more she tore me down the more my ears got hot and I was on the defense.
“I don’t know what you’re reading, because there’s nothing disgusting about anything I’ve written. What are you talking about?”
“I don’t want to read about your boyfriend wiping your ass! Do you want people to see this? Would you want your employers to see this? You have no class!”
I’m pretty sure that’s why my website is my full name.
At this point, I was lost, and growing impatient. I defended myself harshly and tried to reason with her. I pointed out that the messages I send are all extremely positive, and that that one post in particular has inspired a lot of people. I told her she completely missed the message if that’s what she got from it. I couldn’t wrap my head around what was so disgusting about mentioning that my partner helps me use the bathroom (a reality in my life) or that I vaguely eluded to the fact that I’m sexually active. She was acting like I wrote an in-depth erotica novel and posted it for the world to see, (which I’ve been considering writing since this all conspired;) all I did was write a PG-rated blog post about dating that literally uses the word “ass” once. I was so incredibly lost, and in many ways still am.
What’s even better is that this all happened in the quiet hallway of a campus center at an engineering university. I was screaming my head off on the phone, while the nerds around me listened and tried not to make it more awkward. After I hung up, the hallway got quiet and I felt my world crashing down. I held it together pretty well until I walked back to where my partner was studying and said, “Can we leave?” I proceeded to go from completely fine to completely bawling in a nanosecond.
It hit me so hard because I knew without a sliver of a doubt how she felt about me.
It hit me hard because it was honest.
It hit me hard because it was a long time coming.
This wasn’t about my writing. My website and the words I wrote were the tool she used to finally tell me how she really felt. She didn’t criticize my writing at all, really. She started with that, but it quickly became about me as a person. Since our family doesn’t often talk about our feelings, I felt a little proud that she actually faced her emotions. What sucks is that most of her feelings about me are ableist.
I had always gotten a bad taste in my mouth about how my aunt, and many others talked to me when I was growing up. I’ve always been well aware of my disability and saw how it made others treat me differently, whether it be at school or in the neighborhood, walking down the street. However, I couldn’t understand why I felt uncomfortable around my own family, who knew me and lead me to believe that my disability wasn’t ever an issue. I never thought it was an issue, but it didn’t change the way they addressed me, and the feelings that came with it were confusing. When I was younger, I didn’t have a word for it, but it gave me a strange feeling in my gut and made me uncomfortable. It was usually patronizing, and often undermined my intelligence or ability, no matter how subtle. There was a lot of, “Oh, you can’t do that!” And, “Really? You can do that [insert mundane thing that has nothing to do with physical strength]?” Most of the time it was paired with a patronizing tone, and there were endless subtle comments that belittled me. For a long time, I pushed it all under the rug. As I grew older, these tones, attitudes, and actions became more frustrating because I could no longer write off the way they treated me as them not taking me seriously because I was young. It was something different.
I never had a word to describe these attitudes and actions, and no one understood why I was uncomfortable. When I got older and started speaking up about my nonplussed feelings, I was instantly met with, “It didn’t mean anything.” Or, “They meant well.”
The truth is, sometimes they did mean well. Sometimes they still do. More often than not, my family does. That doesn’t change the fact that the way they act toward me is ignorant and stems from a bigger concern, and choosing to stay ignorant is a concept I will never be able to wrap my head around—especially when it comes to issues that affect those closest to you.
In the same breath, “meaning well” doesn’t really mean much. If you pull a trigger pointed at someone, even though you wholeheartedly believe they’d be better off dead, the person still dies. My concern is that belief. If you believe someone with a disability is less than you, and you make undermining comments unknowingly, you still view them as someone who is less human than you, no matter how slight it may be. To me, this is the root of all ableism, or any “ism”.
To be viewed as a “less than” human, especially in the eyes of those closest to me, is a hard truth that I don’t think I’ve fully comprehended, or fully understand quite yet. At its core it is a pain that is unbeknown to most, and is a reality that, when fully felt, I wouldn’t wish upon anyone. There are varying degrees, obviously, but I think any ‘ism’ at its extreme is hate, and it’s difficult to hate someone who is on the same level as you—you have to put them below you.
I’m not saying anyone hates me (that I’m aware of.) I know my family doesn’t, and I know most of the people who have treated me wrongly often don’t hate me either. I’m not here to condemn anyone. What I am saying is that viewing anyone as anything but an equal can be problematic, and even these shreds of “isms” can lead to much greater damage. It concerns me how angry my aunt became when I talked about perfectly normal adult activities, and expressed myself publicly in a positive way. It concerns me how angry a lot of former friends became when I finally stood up for myself, however slight. If nothing else, it concerns me how anyone who has been viewed as “less than” has come to see themselves in the world, because I know these issues have caused me more pain than I let on. It concerns me what that pain can do to a person.
So, now what? I don’t know. I don’t have the answers. What I do believe is that empathy is the path to all love. I believe that it’s hard to hate someone, or view them as anything but an equal if you can put yourself on the same level as them. I think we are more alike than we are unlike, and I think focusing on that could do us a lot of good. I think we should be quick to listen, slow to speak, and slow to become angry.
I think I’ll write more.
- twenty seventeen.
To say this year has been ridiculous would be an understatement—I have been tripping all year. Nothing makes sense, and I have more stories from this year than I know how to write. It’s been hilarious, appalling, unbelievable, and absolutely beautiful all the same.
There have been a lot of significant moments. I’ve cut ties with those closest to me for my own health. I’ve somehow become a minor celebrity in Milwaukee—uncannily running into someone every day. I’ve traveled near and far. I met a lot of white supremacists. I’ve hired incredible people, and have faced some of the hardest employer-related decisions. I’ve committed acts of stupidity, vandalism, impulsiveness, and came out with a lot of ridiculous stories. I ate a lot of incredible food. I drank a lot of PBR. I took a lot of risks. I quit a job that was killing my soul, and I became a full-time freelance writer. I’m living the fucking dream.
Logistically, a lot has happened, but this year has signified so much more for me.
I don’t have the words to wrap it up in a nice little bow because so much has been unraveled.
I’d spent much of last year healing physically and battling all of the mental repercussions that came with it. I didn’t have a whole lot of time to dig deeper, and I haven’t for years. This year I’ve been able to dig into pain that has been sitting while still dealing with the absolutely insane day-to-day, too.
At the end of it all, I regret nothing.
That being said, I’ve learned some hard lessons.
It has often felt like the worst year of my life.
I’ve grieved, and I’ve loved, and I’ve lost. I have learned a lot from pain. I’ve learned a lot from poetry. I have learned so much from oppression, from injustice, from abuse. I’m learning to say those words and know that they’re true. I’m learning to recognize the gaslights and turn them off. I’ve learned what narcissism looks like, what pure evil looks like, and how to set strict boundaries. I’m learning that my worth does not lie within others actions, that the respect I deserve is not a negotiation. I’ve ripped off, and I am still ripping off all of the bandaids that covered gaping, oozing wounds, and I’m healing. I’m finally learning to heal from the inside out.
I know now that I am in control of my life, despite it being out of control most of the time, and it is damn beautiful.
I’ve still got a lot to learn. I have car alarm heart, but I’m learning to sing along to the tune. I have laughed more earnestly than I have in a lifetime. I have gasped for air harder than I did when I thought my lungs were giving out; I didn’t think it could be harder. In the same breath, I didn’t think it could be better.
I have met some of the most incredible people of my entire existence this year alone, and honestly, they’ve gotten me through some of the hardest parts. They’ve taught me that people can show up, will understand, and can be safe. I now know that despite the awful people I’ve endured, there are good people out there, and I know this because they’re tried and true.
For the first time in my life, I’m breathing easy and I know I’m safe, and that is a groundbreaking statement.
I don’t have the words to express how thankful I am.
Maybe it was the worst year of my life—it’s been a fucking whirlwind. Maybe that pain can’t be undone, but I can’t explain how excited I am for what’s ahead, knowing I have a lot more learning to do, knowing that solid people are right beside me.
People have often thought it’s cheeky and shocking that I wear “Black Lives Matter” shirts on holidays (or any day, for that matter.) ‘Oh no, the tiny red head is speaking big words about social justice again… sometimes we wish she would just calm down, and eat some turkey.’ I’m sorry, I’m a vegetarian now.
I am not black, and I will never be black, but I’ve never related to a group of oppressed people more than I have with the individuals shouting these same battle cries. Being disabled, I’m part of a minority, but no one really seems to talk about ableism because disabled people aren’t being shot in the streets, (or even know what that word means.) It doesn’t mean we aren’t dying.
It’s a more subtle, casual, ‘understandable’ form of violence—but it is violence.
According to the American Psychological Association, women with disabilities have a 40 percent greater chance of intimate partner violence than women without disabilities. You can do the research yourself, but there are plenty more statistics about neglect, sexual abuse, and straight up murder against people with disabilities (or should I call it “assisted suicide” to make you feel better?)
In my own life, I’ve experienced everything from micro-aggressions, to blatant neglect, to sexual abuse, to complex abuse. It’s taken me over two decades, but I’m finally starting to understand what this all fully means, process it, and call it what it is. Throughout my childhood, with strangers, and with people closest to me there has been something so different about the things that have happened, and I couldn’t find a word. I’m finally learning what ableism is.
Just yesterday, I sat in a coffee shop with an old friend, and broke down in wide-eyed realization and shock that someone very close to me had committed blatant violence against me, and even I couldn’t see it for what it was until months later. I didn’t even know that I was so close to someone disturbingly comparable to Hitler.
I’ve been reading a lot about dehumanization, and I’m learning that it’s the only word that fits here. I can’t define ableism for you in one article, but by definition, dehumanization is the process of depriving a person or group of positive human qualities. Professor of Philosophy, Michelle Maiese, defines it as “the psychological process of demonizing the enemy, making them seem less than human and hence not worthy of moral consideration or humane treatment.”
That’s a big pill to swallow, but it’s a pill that’s forced down my throat far too often.
It’s heavy, but my eyes are opening, and I’m starting to see how much the violence, neglect, and the pity that has been wrongly put upon me were all a result of who I was born as. I’m coming to terms with the dehumanization that’s happened in my own life—the blatant ableism—and how I can cope. It’s still a hard pill to swallow, but it’s an important one. I still don’t have all of the answers, but I do know I’m not going to stop talking about it just so we can all have a nice dinner.
Quite frankly, I won’t be at those dinners.
Many people ask me why I don’t go to family holidays, hang around certain people that I used to, or talk to so-and-so anymore. It’s easy to jump to conclusions, to assume I’m being sensitive, or to write it off as Irish stubbornness. The truth is, I don’t have it in me to spend time with people who don’t see me as an equal, and no one else needs to be around people who make them feel dehumanized or triggered either—regardless if they’re family or not.
There’s a lot more I could say about this, but I am tired. I’m tired of trying to prove my self worth. I’m tired of protecting myself. I’m tired of explaining why I’m a human. And honestly, I don’t have to.
So, I’m going to take care of myself. I’m going to keep spending holidays with people I can trust. I’m going to talk about what matters when it makes sense, and I’m going to have a good time. It’s likely that I’ll still wear a “Black Lives Matter” shirt.
I’ve thought about joining a dating site again.
Honestly, despite all of the horrible outcomes I’ve had with people from dating sites (and there have been many,) I’ve had some insanely memorable ones too. Same goes for hiring my own employees, and for saying “yes” to anything, when I could’ve said “no”.
It’s all a risk, and I tend to be a risky person.
I’m learning rapidly that some risks aren’t worth taking—at least not for the moment.
Crazy can be fun. Energy is exciting, and new experiences are typically worthwhile, but, crazy also gets very tiring, very quickly, and sometimes the consequences aren’t worth it.
One minute you’re hanging out with someone fun and exciting, and the next you find out they do coke and live a reckless lifestyle that starts to wear on your own. One minute, you’re dating someone who lights up your entire world, and the next you find out they’re a dishonest and manipulative narcissist, inevitably tearing down your entire sense of self. One minute you’re excited about a new employee who is a little overly friendly, and months later they’re breaking into your apartment—or is that just me?
People are risky. Always.
After awhile, though, you learn the signs of toxicity. I’ve spent a lot of this year dealing with a lot of chaos. Someone close to me recently told me, “you attract crazy people.” They’re not wrong—it sure seems like I do—but I think a lot of it had to do with my own inexperience. There have been a lot of red flags I’ve overlooked for the sake of believing in people; in giving them benefit of the doubt. I still often believe in seeing the good in others, but I’m learning how to protect myself, too. I’m learning the difference between good people who are worth taking risks on, and people who are just risky.
I think taking risks has to be a calculated jump. I’m an impulsive person who is constantly swaying between, “what have I got to lose?” and, “I have literally everything to lose.” I think when it comes to trusting people, there needs to be a balance.
People often show you who they are the first time (believe them.) Sometimes they don’t. Sometimes we get blindsided. Personally, I’ve always learned a lesson—even if it was the hard way, (and it usually is.) I don’t know if I would’ve learned the difference between good people and toxic people if I didn’t take the risks, but I’ll never know. All I can do now is take the lessons I’ve learned, put them in a backpack, and keep moving onward.
So, I’m trying my best to slow down. My life has been anything but calm, and though oftentimes it’s been out of my control, sometimes it’s been a result of my risk-taking.
I don’t regret any of it. There have been times I thought I did, and of course, there are things I could’ve done differently. But I’ve learned a shit ton of lessons in a small amount of time, and it’s made me a stronger person.
So… I don’t think I’ll be joining any dating sites anytime soon. I’m not ready to throw myself into a pool that’s so risky quite yet, but I am hiring new people, and I am still saying “yes” when I can choose to say “no.” I’m just a little more careful, a little more thoughtful, a little less impulsive. Maybe I’m growing just a little bit wiser.
God, I hope so.
I have been grieving all year.
I’ve experienced many kinds of grief throughout my life. I’ve experienced tragedies, unexpected loss, deaths, and multiple other kinds of grief that are less cut and dry.
This grief has been a little different.
I’ve been cutting toxic people out like it’s nobody’s business. I’m learning the depths of my past in relation to who I’m trying to become. I’m learning what I deserve, and I’m learning how much the people around me have influenced me, held me back, and spread a lot of bullshit (and quite honestly, abuse,) throughout my life. This might sound harsh; I’m not saying it isn’t.
Here’s the thing: losing someone sucks, even if they suck.
Even if they’re toxic. Even if they’re hurtful, detrimental, or have no place in your life anymore. Even when it’s a good thing, it’s still the hard thing.
It’s still a loss, and I’ve experienced many:
I’ve lost family—literally and figuratively. By choice, by chance, and by tragedy.
I’ve lost friends—by the dozens.
I’ve lost security. I’ve lost dreams. I’ve lost the entire foundation my life was built upon.
But, we rebuild. Sometimes these losses are out of our control, and sometimes we get to choose who stays, and it’s often the hardest choice.
I’ve been grieving all year, and I don’t know how to explain that. I don’t know how to explain that although I am building a life I’m proud of, there’s still a loss. I’m letting ideals die and the views I had of my life vs. the reality it’s become. I’m letting loved ones stay at arms distance. I’m letting things go simply because they are too heavy.
With acceptance comes a lot of grief, and it’s often a solitary one. I still don’t know how to explain that although no grandiose event has happened lately, my world is being knocked down and growing new. It’s amazing, and beautiful, and wonderful, and sorrowful all at the same time.
Sometimes the grieving doesn’t get easier, but it does get different. Sometimes there’s no way to talk about old wounds without opening them back up, but I think that might be okay. I think grief is a process that never ends—loss changes you, no matter how big. There will still be a hole, or a scab, or a scar. It’s okay to acknowledge it. It’s okay to talk about.
I will never be the same, but most days I’m thankful for that. This change is liberating, and freeing, and reassuring that my future is bright. I’m a lot of things, but I am not stagnant and I will not stop growing, despite the growing pains. Despite the losses. Despite any of this.
No means no means no means no, still means no.
“Not right now,” is not a yes.
“I don’t feel like it,” is not a challenge.
“I’m not sure,” still means no.
“Can we wait?” Is not a promise.
“I don’t know,” is a no.
I recently dated someone who told me, “No doesn’t always mean no.” In the same breath, they said, “No can turn into a yes.” At this time, I yelled at them because I’m a confrontational person, but when it came down to it in the end: he was right.
I didn’t always say yes. Sometimes I said ‘not now’, which was protested, and they won. Sometimes I said ‘I don’t think we should’, which was overpowered. I don’t think I ever said no, but I don’t think I was ever in a position where I thought I could.
Consent is a tricky thing nowadays. Well, consent isn’t tricky, but it is often misconstrued. I can’t sit here and say there aren’t women who lie about consent to get a man in trouble; that happens all the time. But, I think there are also a lot of women that don’t know how to say no, especially when manipulation is involved. They aren’t lying when they say they didn’t want to, but didn’t know how to say it. It’s hard to say no when there’s a man on top of you that weighs twice your size, especially if you’re disabled.
As a woman, self-worth plays into almost everything, for me personally. For someone who has the history I do, it’s true that there have been times in the past I’ve thought I had to sleep with people for them to like me. It’s not hard to see; it’s not hard to prey on. Is it right? No. Was it rape? Also, no.
There is a definitely a gray area, and I still don’t know where that line is, or if you can walk it. I’m learning that I don’t want to be around people who make me.
Manipulation has made me make a lot of decisions I’m not okay with. I’m not saying I didn’t consent—I’m not saying this person committed a crime—I’m saying they put me in a position time and time again that ate away at my willpower. I’m saying that anything that isn’t a yes, should be a no in the eyes of any decent person. I’m saying that no woman should have to question if they even can say no.
There are still good people out there. The first time I was with someone after the one aforementioned, they always asked me straightforward, and made me say “yes” before anything would happen—even a hug. It blew my mind, but I’ve slowly realized that this is how it should be.
For disabled women, it’s that much harder. If I’m out of my wheelchair, I can’t move at all. All of my trust is on the other person, whether I like it or not. I have to be more careful than the average woman, and I’ve been lucky in the grand scheme of things. I’ve met some shitty people. I’ve been in relationships that tore away at me, but it was never because of my physical vulnerability. I’ve been lucky.
So, maybe he was right. Maybe a “no” can turn into a “yes,” but anyone who wants to turn your decisions into theirs shouldn’t be making any decisions in your life at all.
No still means no. As hard as it can be—stand firm, friends. We’re worth more respect than we can even imagine, and you deserve to be able to say no.
And so do I, and I do.