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.

 

lovesma

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.