I recently tweeted about that I’ve become an outcast among parents to disabled (especially neurodivergent) children. From being someone whose articles were read, shared and praised by other parents, I’m now mostly ignored. Not that it’s unexpected, I knew I had this coming.
A couple of years ago when I started to engage in a particular organization, I was a bit uncomfortable with some of their vocabulary. However, I actually thought that their rhetorics was mostly a consequence of not knowing better and that I could contribute to a change. I was fairly new in the disability community, and naively enough I thought that my experiences as disabled myself was going to be considered an asset. I had a lot of internalized ableism that I had never dealt with and I think that made me less critical, even though I was never comfortable with the ableist views that were presented.
One of the things that this organization promotes strongly is the perspective of parents. They are centering parents’ views of poor healthcare, poor schools and so on, instead of promoting the voices of disabled people. I have a huge problem with this, and in this post I will dig deeper into three aspects of this problematic perspective.
The first one is that even though many of these parents are really suffering from having to fight very hard for the rights of their children, centering their own experiences leads to dehumanizing of disabled people. Parents may be depressed, worn out and not being able to work because of all the fighting for accessible education and healthcare for their children, but that is not the core of the problem. By focusing on how much parents are suffering the main issue is obscured. Because the main issue with ableism is that disabled people are seen as inferior to people without disabilites and are therefore denied access to basic human rights such as education, health care and communication.
When I see these parents advocate for better healthcare for their disabled children by arguing that parenting a disabled child is basically ruining their lives, not only are they stealing focus, they are also talking about disabled people. Since they rarely promote the voices of disabled people, but instead ignore and sometimes even try to silence disabled adults that question them, they are contributing to making disabled people objects to talk about, instead of partners to engage in a conversation with. I believe that both these aspects are obstacles to an actual change.
The third issue is that a a lot of these parents are disabled, just like their children, but that doesn’t change the perspectives they are promoting. It really doesn’t matter if they are autstic or not when they advocate from a neurotypical perspective. When they talk about disabled children as they were some sort of aliens, completely different from themselves, they are promoting ableist views. Over and over the same narratives are presented and that includes realizing that something is wrong with their children. This insight is usually followed by statements about how they never chose for their child to be autistic (or more likely, “have autism”). The common denominator of these stories is that their children’s disabilities are portrayed as tragedies, instead of focusing an the actual disaster – ableism.
The situation for parents of disabled children can be very hard, but that doesn’t legitimize for parents to reproduce the dehumanizing of disabled people. Change will come from refusing to conform to dehumanizing logics, where disabled people never get to be the center of our own experiences. As sad as it is to see parents of disabled children reproduce the problems they claim wanting to fight, at least I know my own principles. I am rather ignored than being a part of you, if my belonging to you means allowing you to treat me as inferior.