I just finished reading the book Raising My Rainbow, which I found to be a quick and enjoyable diversion from preparing for Monkey’s latest surgery/sclerotherapy. The author, Lori Duron, has a very popular blog. Her younger son, C.J., is gender nonconforming: from an early age (before 3 years old) he has shown preferences for toys, clothing, and activities that our society generally considers to be “for girls.”
At one point in the book, a friend asks Duron if she ever feels like she’s parenting a special needs child, and she says that she does but she “feels bad saying it” (p. 128).
As the parent of a “special needs child”, I had a mixed response to this. On the one hand, there are many parallels between my experience of parenting Monkey and Duron’s experience parenting C.J. She’s certainly not imagining that; it’s part of why I enjoyed the book so much. On the other hand, her attempt to explain why she feels that way felt – to me – off base:
“Special needs kids are often defined by what they cannot do. My son cannot blend in. He cannot wear boring socks. He cannot resist having his nails painted. He cannot stop dancing when music comes on. He cannot resist the urge to strike a pose for the camera. …” (129)
She goes on in this manner. This part really rubbed me the wrong way. There is no comparison between the things Duron lists here and what my son goes through, or other children I know with medical needs. There’s no comparison between having your nails painted, and being repeatedly injected with caustic chemicals or chemo drugs under general anesthesia; between feeling compelled to dance, and being hospitalized because you can’t breathe. The actual medical aspects of disability – physical pain, medical trauma, frequent or invasive tests, dependency on specialized equipment for survival – are not part of C.J.’s or his mother’s lives.
Duron’s explanation of what C.J. and kids like my son have in common is off, but she’s right that they do have something in common – not what they can or can’t do, but the way they’re viewed and treated by society for falling outside the acceptable norm.
There are two main “models” of disability: medical and social. While some people see these as opposed, I see them as complimentary. The medical aspects of disability are real, important, and undeniable. The social aspects that follow from these medical aspects essentially create what we call disability. Most disabled people experience aspects of both these models and it’s not always easy to sort out which is which.
What Lori Duron is experiencing with C.J. is basically the social model of disability. Like parents of children with medical problems and/or visible anomalies, she has to advocate hard for her child with doctors, teachers and school officials; she has to explain her child to others; she sees people feeling uncomfortable because of her child; she loses friends; she worries (with good reason) about her child being teased and bullied.
When she talked about “superficial friends” asking questions like “Is he still into dolls? […] When do you think he’ll be more ‘boy’?” (126) it made me think of all the times that relatives (who mean well but should know better) ask me, “Will this be his last procedure? When will he be done with all the medical stuff?” In both cases the real, underlying question is: “When is your child going to be normal, according to my idea of what’s normal?” And the answer is: Probably never. C.J. will probably continue to express his gender in atypical ways, although the specifics may shift over time. Monkey will continue to have an atypical anatomy throughout his life, although it may look different than it does now and the treatments should get farther apart. They are not going to wake up one morning and suddenly be acceptable to you; you’re the one that needs to change.
This passage really resonated with me:
“[C.J.]’s taught us that you don’t always get what you expect when you are expecting. You assume that your male child will want to be male, that he’ll like traditionally male things, and that he’ll be physically and emotionally attracted to women when he grows up. Sometimes that doesn’t happen. There is comfort found in expectations, but when they are squashed when your child is three, four, or five years old, you start to question why they exist at all. You attempt to move on without expectations and try not to be jaded when people around you hold tight to the old, comfortable ones.” (251)
This is essentially the same process of expectation, disappointment, grief, and adjustment that parents of children with Down Syndrome or other genetic syndromes go through, or parents of children with autism or cerebral palsy or so many other physical and neurological differences.
The problem begins in those comforting expectations. It begins in social constructs: in the assumption that people are supposed to be a certain way. People are supposed to have a certain number of chromosomes, a certain number of fingers and toes; they are supposed to have genitals that clearly fit one sex or the other; they are supposed to identify with the gender that matches their genitalia and to like certain things based on that gender; they are supposed to get around with their legs, not with crutches or a walker or wheelchair; they are supposed to speak with their lips and vocal cords, not with sign language or an AAC device; their brains are supposed to regulate their moods, emotions, sensations, and perceptions of reality in a particular way; they are supposed to reach certain developmental stages at certain times.
But people don’t. Many of them “fail” one or more of these expectations. Based on which expectation(s) they fail, they will be labeled disabled, mentally ill, intersex, and/or a sexual deviant, and will find themselves at a continual disadvantage socially as they try to navigate a world that would really rather not acknowledge their existence. The denial of human variation is so strong that when parents like Duron and myself and others I know both acknowledge and accept our child’s differences, we are accused by others of wanting our child to be gay or transgender, or wanting him to be disabled. No parent wants extra suffering for their child.
Based on her book and blog, I think Duron is an awesome mother to both her sons and an awesome advocate for the youngest members of the LGBTQ community. At their most basic, both disability rights activists and LGBTQ activists are saying: Your idea of what it is to be human is too narrow. Broaden your idea and let us in.