I received this message with a link to the new documentary, In the Land of Canaan, last night, from a friend. I had known this was a film being made by a self-proclaimed "special needs dad" after his daughter passed away.
|[Image is: a small girl holding the finger of her father.]|
First and foremost, I must say that I do extend the deepest condolences to this family in regards to the loss of their precious daughter. I hesitated to share my thoughts about this documentary because of the rawness of the family's grief. I can understand how making a film like this could serve as a sort of therapy, some way to work through what happened, to try to make sense of something so utterly senseless. But there is danger in doing a project like this when your feelings and attitudes for our community have yet to evolve. While done with the best of intentions, I have found this documentary to be objectifying, exploitative and ableist, and I cannot in good conscience, have watched something like this, that so harms my community, and not speak up about it.
Very early in the documentary, the daughter who has passed away is referred to as "a door" to a land of insights and higher understanding. Her father speaks about the "requirement of her life," which, admittedly, made me feel deeply uncomfortable. The idea that a toddler is "required" to die so that her parents, her siblings and her community can gain insight about life is just plain dangerous.
The child's father proceeds to talk about "the messages these children have come to share." There is nothing inherently wrong with this statement alone, but having watched all 68 minutes of the documentary, and seeing only one (adult) "child" with a disability speak for 30 seconds it became very clear that it was not the children's message that was key. It was whatever deeper meaning the parents have gleaned from parenting kids with disabilities. Their own, grown-up realizations are put on children as young as toddlers, making them out to be objects of inspiration, simply for existing.
In fact, one professional who worked with the filmmaker's daughter said she was "happy in the face of pain," that she "let everyone know they could keep pushing through. That's what [she] did for us."
We are advised to "get our Kleenex out" before the film officially begins, which for me, suggested strongly that disability would be framed as tragic and sad. I was unprepared, though, for the level at which so many children were exploited in this film.
Twelve children (including one teen or adult) had their names and diagnoses shared in full, written in block-style, white lettering against a black background. These were everything from "never officially diagnosed" to "bowel and bladder incontinence". One little boy's picture, name and diagnosis was shared, even though he himself never made a single appearance in the film. Let me say that again: twelve people had their medical histories shared without their consent.
No less than 30 times in the course of 68 minutes were these children blatantly exploited.
There are the more minor instances, which include four times when a child is muted while showing aptitude on an instrument, playing with a sibling or engaging a videographer, all while their parents are heard describing them, telling the audience that their child will, for example "come right up to you and say hi," but the child in question is muted, so we cannot hear him.
Three of the kids (age 18 months through 6 years) are shown in the bathtub a combined six times. School-aged kids are shown in the process of getting dressed. Three times, a child was shown without pants, and twice, a child with a back deformity was shown without a shirt. (This same child's bed and chair were shown, solely for the fact that they were modified to accommodate the child's deformity.)
Three times children ages 5 and younger are shown in the midst of having their medical needs seen to. Twice, while they are hospitalized and obviously in pain and miserable. And, perhaps, most disturbing of all, the child at the center of this film is shown an astounding eight times while she is dying. Once, she is pictured in her casket.
If you would not mute a typical child of a similar age, if you would not feature a typical child of a similar age in any of the above circumstances due to respect for their privacy and dignity, do not do it with a disabled child. They deserve the same privacy, dignity and respect their nondisabled peers do.
In the credits at the end of the film, every single parent is named and thanked individually, as well as every single donor who funded the film. But not one of the twelve children is thanked. Their diagnoses were outed, their real names used, their dignity disregarded and not one of them was thanked in the credits.
The degree of ableism in this film was stunning. Bolding is mine, for emphasis.
Babies are the most innocent of victims and the parents even moreso. We care for the baby and do whatever that baby needs but not far from our minds are the parents. The parents also have to be rescued, too.
This first quote was said by a NICU staff member who was also a mother of a disabled child. As someone with CP who was once a premature baby in the NICU, the thought that the parents are somehow more in need of more help and more care than the babies trying to survive is just flabbergasting. Do parents need help and support? Absolutely! But the notion that grown adults require more help and support than the tiny babies that are trying to live is just erroneous and dangerous.
I had such a hard time at first. I knew what would happen, bringing [my daughter] home. I knew we would end up loving her, because that’s what you do...everybody ended up loving her because she was so nice.
I'm not a mother and I have never known a child whose disability would ultimately lead to their death. I can't say that I wouldn't also put up walls emotionally to protect myself from the imminent loss. But I cringe at the thought that this mother found her own daughter lovable not because she was her child but because she was nice. I hesitate to even think about what the mom's thoughts would have been had they had a crabby child. Would they find her less worthy of love? I'm hoping this was just an instance where Mom misspoke due to the emotion of the moment, because the alternative is too unbearable to comprehend.
We’ve been taught to put our spouse first but we can't do that. We have to put [our child] first because of his medical needs.
Again, I am not a parent, but I don't know a single one who would put their adult spouse before their children (disabled or not). When you become a parent, that child does come first, and the notion that putting a child first is somehow a hardship at worst or an adjustment, at least, is troubling.
After the documentary is over, we are urged to #Makeafriend with a person who is disabled, or with a family who has a child with a disability. The dad who made the film talks to us in a separate video about a mom who has a 20-year-old son with CP who has no friends. When the dad asked the mom why he didn't have friends she said it was because he had CP. The dad says it's due to social stigma, and that we, in society, have to get used to people who "look different, sound different, smell different" (smell. different.) Then he urged us to Google images of "people with physical deformities," and see what feelings came up.
He urges us to make friends with people with disabilities because we will "gain more than we could possibly give." There is even a place at the very bottom where people will be able to share pictures and stories of their friendships with disabled people (or families with disabled children.)
Again, as someone with CP myself, this was super offensive and upsetting. While the intention is good, all a campaign like this succeeds in doing is further othering us, and objectifying us. Friendship with us is not viewed in an equal, human, healthy light. He says "beyond all of the deficits, there is a miracle waiting to happen."
My (able-bodied) friend who recommended I watch this film, said tonight, "I have been friends with you for seven months! Where is my miracle????"
It sounds funny, but it's also true. I am not a magical being. I am not here to inspire her or any other able-bodied person to smile more or overcome challenges. Ask any of my friends, and they'll tell you: I'm probably the one more likely to ask how they are doing, talk their ear off about what book I'm reading or what I am writing about and then beg them to watch Grey's Anatomy with me. No miracles, just a friend pretty obsessed with media.
The goal should not be to speak for kids like I once was, but to teach us to communicate whatever we have to say in a way that works for us.
I am not your miracle. These kids in this film are not your magical "doors" to another land. They are just kids, living the lives they have been given. They don't have value because you realized something while parenting them.
They are people.
I'm a person.
We deserve to speak for ourselves, and to have our voices heard. We deserve dignity and respect and privacy. We have value because we are human beings.
That is, and should always be, the message.
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