Note: This article contains discussion of medical abuse, murder and spoilers for “Mommy Dead and Dearest.”
 
I recently watched “Mommy Dead and Dearest,” the HBO documentary it seems everyone is talking about. It begins with the sort of lurid true crime tale you see in tabloids. Girl meets boy online. Girl and boy form a toxic relationship filled with salacious sex and bad cosplay. Girl and boy plot to stab her mother to death, then run away, leaving a cryptic Facebook message, “The bitch is dead.” Police trace the message; boy and girl are arrested and go to prison. Justice served, right?
 
It’s not so simple.
 
For years, Dee Dee Blanchard told everyone her daughter Gypsy Rose Blanchard was disabled and chronically ill. She convinced dozens of doctors her daughter had epilepsy, muscular dystrophy, leukemia, intellectual disabilities and more. Gypsy had a feeding tube. She underwent several surgeries. She used a wheelchair. Dee Dee got every possible benefit for Gypsy: free medical flights, Make-A-Wish trips, and a house from Habitat for Humanity. There were online fundraisers, awards and sympathetic news stories. Neighbors felt sorry for mother and daughter and tried to help them out. DeeDee started a blog about their struggles.
 
But it was all a lie.

Gypsy Rose Blanchard wasn’t sick. She could walk without any difficulty. She never had cancer or seizures. She just believed what her mother said and did what her mother told her to do. It was a case of Munchausen syndrome by proxy, a rare form of child abuse where an adult, typically a parent, fabricates illnesses in a child to gain attention and sympathy. Although financial enrichment is sometimes a motive (as it was in this case) Munchausen by proxy goes far beyond monetary gain. It’s a twisted form of narcissistic self-aggrandizement — and nearly everyone Dee Dee ever met was complicit in it. 
 
One of the key questions posed but largely unanswered in “Mommy Dead and Dearest” is how did the abuse go on for so long? Why didn’t someone recognize what was happening and stop it? Dee Dee gradually cut other people who loved Gypsy out of her life, including her father and stepmother, so it’s easy to understand why they had no idea. But she took Gypsy to numerous doctors. Yet over nearly two decades, only one doctor ever raised suspicion that Dee Dee was not acting in her daughter’s best interests. Neurologist Dr. Bernardo Flasterstein suspected Munchausen syndrome by proxy, but Dee Dee got a copy of his notes and never took Gypsy to see him again. When he tried to follow up with Gypsy’s other doctors, they told him the family was to be treated with “golden gloves” and refused to listen to his concerns.
 
Why the golden gloves? Why didn’t they see something was wrong? I believe it’s because Dee Dee showed them what they wanted to see, what they expected to see from a mother whose child has disabilities. She pretended to be the ultimate “special needs mom,” long-suffering and selfless. But to my eyes as a person with a disability, her behavior was highly suspicious and exemplified the most toxic forms of ableism. 
 
I believe Dee Dee Blanchard was able to get away with medically abusing Gypsy for so long because her behavior reinforced the pity narrative of disability. She used pity to manipulate those around her by portraying her daughter’s life as a tragedy and the family as in need of rescue. She used every sad disability stereotype and trope to make people feel sorry for her daughter — and more importantly, her struggles as a mother — including hair loss, a wheelchair, and an intellectual disability that ostensibly made Gypsy “like a child.” In videos of them together getting free trips to Disney World and sympathy from the media, Dee Dee clearly relishes the attention for herself, not because of what her daughter is getting out of it. Meanwhile Gypsy either sits meek and silent beside her mother, or says (or in once case sings) a few fluffy words of inspiration to elicit maximum sympathy from the viewers.
 
Dee Dee Blanchard never sought to empower her daughter or fought for her to get access to education or employment. She turned her daughter into a pity porn star (inspiration porn‘s inbred cousin) for her own narcissistic ends. And society went along with it because Gypsy was what we think disability looks like. No one noticed what was missing — a desire to encourage her child towards independence and living life on her own terms.
 
Dee Dee’s manipulative game took advantage of society’s infantilization of people with disabilities — a successful yet inevitably limited ploy. People love a sob story about a cute kid with a plucky, positive attitude despite “suffering” from a “tragic” ailment, or three, or five. But that support tends to fade when the child grows up. Although Dee Dee lied about Gypsy’s age to buy them a few more years, the clock was ticking. And more importantly, Gypsy herself was growing up. She wanted the independence her controlling mother had denied her. She had hormones and sexuality and wanted a relationship like other girls her age. Remember, other than knowing she could walk, Gypsy believed she was actually sick. She wanted freedom anyway. She wouldn’t have deserved it any less if she really had a disability. 
 
The case of Dee Dee and Gypsy is unfortunate on many levels, the first being the psychological harm caused to Gypsy. Gypsy today almost certainly has disabilities — the kind that can’t be seen. Although she could have escaped the abuse without resorting to murder, she lacked the life experience to understand that and was exploited by yet another person — her boyfriend. Gypsy’s actions mirror cases of abused spouses who killed to escape domestic violence but then went to prison because they planned the killing. She endured one of the worst examples of coercive control, a form of abuse that is often used on people with actual physical disabilities. I’d like to see her get clemency, but I’m thankful her prison sentence is relatively short and hopeful she has a chance at a fulfilling life.
 
This case is also concerning because it could cast a cloud of suspicion over families whose children truly have disabilities and need help. Our system is broken and many people with disabilities have to resort to crowdfunding to get home modifications, accessible vehicles, and other necessary supports that aren’t covered by insurance. I would hate to see families not getting the help they need because people think they could be another Dee Dee and Gypsy. But we do need to do some research before we give. 
 
When looking at the warning signs of Munchausen syndrome by proxy, we must consider the overall picture. We must be careful not to mistake strong parental advocacy for something harmful. Many caring parents insist on being with their child as much as possible during hospitalizations or serious medical procedures, because they love their kids and don’t want them to be alone. Some parents have had negative experiences with medical professionals, and therefore feel the need to be present and alert for potential problems. The key difference between a well-meaning highly involved parent and a problematic one is the intent. Is the parent there to support the child, or to gain attention for themselves and be a martyr? Unfortunately, I’ve seen the latter a number of times. But in every case, the child had legitimate disabilities, so it doesn’t necessarily indicate Munchausen by proxy. It does, however, indicate a problem.
 
Parents of kids with disabilities often go through a grieving process. They may feel the dreams they had for their child have been shattered. They may worry about whether their child will have access to the proper supports and be accepted by society. They can get caught up in caregiving, advocating, dealing with medical professionals and trying to manage their added responsibilities. They need the chance to think about themselves sometimes. They need supportive friends and family who can step up to help so they can take a break. They need people who can be there to hear the full range of emotions they need to express  — joy, sadness, fear, anger. They sometimes need to feel sorry for themselves, because we all do.
 
Self-care and feeling heard and understood are essential parts of being a healthy human. But when their child needs them, parents must be able to set their own struggles aside and become advocates. They need to work through grief to find acceptance, then move beyond that to empowerment. They must learn to recognize their child’s need for autonomy, a need which exists in every person regardless of how “severe” their disability may appear to be. Their advocacy should focus on their child, not on making themselves into pathos-stricken heroes.
 
I wish the “Mommy Dead and Dearest” documentary had confronted this aspect of the story more directly, and made it clear that coercive control of people with actual disabilities happens and is just as harmful. Munchausen syndrome by proxy is rare, but using one’s child as a pity prop is all too common. Dee Dee Blanchard and others like her only get validation for exploiting their children because we give it to them. We can vote with our eyeballs by complaining to media outlets that depict disability as inherently tragic and parents as victims. We can vote with our dollars by not supporting fundraisers that promote a suffering-based view of disability. It’s time we start rejecting the pity narrative of disability and all the toxic baggage that goes with it.
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