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

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