‘I’m an autism mom,’ someone said to me the other day.
Talking about parenting while disabled is a fascinating conversation, given that society continues to discriminate against disabled parents. Children are taken from disabled parents solely on the grounds that their disabilities make them ‘unfit to parent,’ with no additional consideration. Disabled people are forcibly sterilised to ensure that they can’t have children. They are pressured into birth control or sterilisation and told they shouldn’t have kids. Being a parent is a difficult enterprise at it is, but having disabilities alongside creates tremendous social obstacles. I’ve never heard an autistic parent refer to herself as an ‘autism mom,’ but everyone self-identifies in the way that works for them, and I respect that.
But no, that’s not what she meant. It turns out that her child is autistic, and she’s subsumed his identity into her own. His very identity is actually a modifier for her own, a mere adjective. He is not an actual human being. He is an object within the context of their relationship to each other.
Autism is on the rise in the United States and it’s a subject of immense conflict and complexity. It’s a disability also marked by a tremendous push towards self-determination and self-advocacy, with actual autistics fighting back on the notion that they aren’t human beings. Autistics are tired of being treated like objects and reduced to tragic stories in the news, and many are also tired of the way parents talk about them and interact with them. Treating autistic kids like objects dehumanises them and makes it very difficult for them to achieve independence and build lives for themselves.
This kind of language, though, is incredibly common, and it’s part of a larger culture of dehumanising disabled children. At its most extreme, we see parents who kill disabled children being excused because of ‘extenuating factors’ or ‘it was just too much’ or ‘there was so much pressure.’ We see those parents treated like tragic saints in the media and then we see them get off with a slap on the wrist when (if) their cases ever go to court, because who cares that they killed children, those children weren’t real people, they were just disabled, I mean, really.
At less extreme levels, it’s in the thousand daily cuts flung at disabled children and adults alike. All of them carry heavy overtones when it comes to disabled children: That they don’t exist as autonomous beings, but rather as burdens for their parents and heavy loads that people have to make decisions about. Not for, or on behalf of, as seen with nondisabled children, but about. We also see them used as pawns rather than individuals, as in the everpresent anti-choice quest to suggest that disabled people should oppose abortion lest we become the architects of our own destruction by ushering in an era of mass murder of ‘innocent unborn’ disabled foetuses. Kids with Down syndrome are particularly popular stars in this kind of rhetoric, with no respect to self advocates with Down syndrome who are socially active and aggressive — and who often support the right to choice, in part because it reflects the right to bodily autonomy, something the developmental disability community has had to fight so hard for — and I’m talking about actual developmentally disabled people, not the nondisabled people who try to glom on to them.
This is one of the problems with the way people talk about disability communities: Parents seem to think they are ‘in the community’ when that’s not the case. They are outsiders. They don’t experience what their children do. They will never experience what it’s like to grow up disabled and live as disabled adults with lives rooted in a disabled childhood. They don’t share commonalities that the peers of their children do. It’s offensive to see nondisabled adults identifying as part of the disability community just because they have disabled family members. It doesn’t work like that.
You don’t ‘live with disability’ just because you know someone who is disabled. You live with a disabled person. That’s an important difference. ‘A disability’ refers to a specific impairment that someone experiences. ‘A disabled person’ is an actual human being with a specific impairment. When a nondisabled person says ‘I live with disability,’ what I hear is a complete erasure of someone’s identity and a complete lack of respect for the disability community. And it makes me burn with fury when I think on how hard the disability community has fought for autonomy and recognition as human beings, rather than objects for people to claim to care about.
I do not deny that parenting disabled children can present challenges that parenting nondisabled children does not. The health care expenses associated with disability can be extremely high, for example. Disabled children often face prejudice and discrimination and their parents have to support them when fighting these things — and fight for them when they are too young to stand up for themselves, or unable to understand the complexities of a situation. It’s important for parents to play these roles for their kids, but parents of nondisabled children have to fight the same fights: When their children are being bullied, for example, they have to support them, too. Parents have a lot alike, regardless of the ability status of their children.
I am completely puzzled as to why someone would identify as an advocate for disabled children and then completely erase their humanity. I get that kind of dismissiveness from disablist people who think that disabled people are not human beings and certainly aren’t worthy of equal, fair treatment in society. I can’t comprehend it when it comes from parents of disabled children who assert that they care deeply for their children and want the best for them.
If you want the best for your child, start by treating your child like a person.
Image: Providing support to the Red Cross in Afghanistan, UK Department for International Development, Flickr