If the title of this post sounds a bit peeved, it’s because I am. Peeved, that is. With all due respect to lots of smart, passionate, very great nondisabled parents of disabled children out there, it is time for those people to sit down and let disabled people advocate for ourselves. For our voices to be at the top of the conversation. For people to be forced to engage with us as human beings, not safe nondisabled intermediaries. I get that many of you think you are doing the right thing and you want to help, but you are actually hurting.
If that makes you uncomfortable to hear and you want to run away, please don’t. Because if it’s making you uncomfortable, that’s a sign that you need to be hearing it.
Here’s the thing. I understand how nondisabled parents turn into spokespeople. We live in a disablist, terrible society, and children — especially young children — have a hard time advocating for themselves. For your kid to get along in school and function in society, you have to be noisy and aggressive. Because otherwise your child would be at a tremendous disadvantage. Your advocacy gets your child through school, helps your child access things they are legally entitled to, gives your child a better start in life. Disabled or nondisabled, children have better outcomes when their parents are highly active and involved, and you are doing a good thing by being a good parent. For disabled children, it’s really hard to achieve parity with nondisabled kids unless you have a parent willing to act as a bulldog. I get that.
The thing is, though, that nondisabled people have come to dominate conversations about disability outside the lives of their children, and it’s really damaging. There are a lot of reasons it’s harmful and many parents haven’t thought about it before, or think that though self-advocates are important, they still have a role. It’s possible people have assured them of this, not wanting to lose ‘allies.’ And I don’t dispute that people interested in working in solidarity with me are valuable and their support means a lot, but at some point, it’s my life on the line, not yours.
Disabled people are regarded as lesser, which means that our voices are not weighted equally with those of nondisabled people. When nondisabled people are talking over, or around, us, that means that people have an excuse not to listen to us. They can focus on the nice, palatable voices of people like them — and many nondisabled parents of disabled children have tame, sanitised versions of disability to present. That doesn’t further our civil rights. It doesn’t.
By only hearing from nondisabled parents, people also aren’t forced to consider the fact that actual disabled adults exist. Adults with the disabilities that are being talked about. Adults who may actually be in the room. Thus, we are further stigmatised and erased from the conversation — and that makes it hard for us to fight for our own liberation. This is really brought home by the fact that the majority of these parents are white, because they have the money, time, and economic privilege to turn into ferocious advocates for their children. This creates the illusion that the face of disability is white, and allows people to continue to make an appeal to authority in the form of a nice white nondisabled parent — ignoring parents of colour and their children, and refusing to engage with the considerable racial issues bound up with disability. Disability is intersectional, but you wouldn’t know it to look at the heavily white, parent-weighted face of the mainstream stable of ‘disability rights experts’ that the media and others tend to turn to.
A lot of nondisabled parents also engage in very egocentric, medical model-based advocacy. Aside from the ones who say things like ‘I live with disability,’ as though disability is an abstract entity sucking oxygen out of the room, many parents are focused on very individualistic interventions and conversations about disability. Instead of broader structural issues, the question at hand is their specific child and the issues that child faces. That’s something the larger disability rights and disability justice movements want to shift away from. The question isn’t ‘how come the school doesn’t accommodate this specific autistic child,’ but rather, ‘why does society privilege non-autistic people over autistic people, creating a series of structures from the classroom to the workplace that disadvantage us?’
The disability rights and disability justice movements have been fighting for decades for an equal place in society. Self-advocates have been the drivers of that fight from the start, but they’ve been neutered, erased, and watered down in many histories. With the 21st century has come a defiant pushback from self-advocates who are tired of being kept out of their own movement — and who are tired of the lack of intersectional engagement in that movement. Every time the voices of nondisabled people — especially parents — are privileged over those of disabled people and self advocates, we lose. Maybe it makes you feel good to be involved in making policy and working with ‘advocacy organisations.’ Maybe it makes you feel good to be quoted by the media and treated as an authority — sometimes over the very vehement voices of actual disabled people. But it makes us feel pretty bad. It makes us feel like we have to dilute and tame ourselves for people to listen, like we need to perform a specific kind of disability and activism to be taken seriously. Like we need to suppress ourselves and our identities to cater to the desires of the society that hates us, because if we don’t, there are always some nice parents around the corner who are happy to speak for us.
So please. Please. Reconsider what you are doing, where you are doing, and why. When actual disabled people tell you things and talk about how you can work with us, listen to us. When we tell you to let us have the floor, give it to us, because it wasn’t yours to have in the first place.
Image: Workers with disabilities in Dong Nai, ILO in Asia and the Pacific, Flickr