Many people confuse parent support with disability advocacy. Those are two separate things. This is why sites like The Mighty are so problematic. You can't complain about parenting a disabled child in the same space that you claim to want to uplift and inspire people about disability. The narrative of tragedy surrounding the experience of parenting disabled children has real life consequences for disabled people. If you want to serve our communities, you must not tell our stories without us and with so little respect for us. If you want to help disabled people, learn about ableism, learn about injustice, learn about ways to make the world better, fairer and more inclusive for us.
Disabled voices MUST be central if you are interested in advocacy. Disabled voices MUST be the priority in any conversation about our lives. Parents and caregivers are important and if they feel that they need support in their journey, it can never come at the cost of our humanity. If your support is toxic, it helps no one. It certainly doesn't help the disabled child you are parenting and it also hurts you, and your relationship with your child.
There are lots of places that are interested in parent EDUCATION, which is different from support, but in the end, that is what is going to make you feel the most supported. When you learn from the real experts (disabled people), you are going to find the kind of peace that you just can't find from a group of people sitting around complaining about disability and who view their children as burdens.
Disability is a natural part of the human experience. That's from the ADA (Americans with Disabilities Act). I say this a lot, but if a quarter century old piece of legislation is more progressive than you, you've got a lot of learning to do.
One of the reasons disability activists are so critical of parent centered spaces is because we are the ones living with the consequences of our lives being portrayed as burdens and tragedies. We don't want your kids to grow up feeling that way. We want better for your kids because they deserve it.
So, I don't like The Mighty, and I don't like a lot of parent centered spaces that think that we need to see "both sides" when one of those sides is literally arguing for our own lives. Disabled children and adults deserve to be respected and to be able to live our lives with dignity. We do not deserve to have to defer to a parent's "right" to complain about their lot in life. Disabled lives have value and we need to start remembering that and believing that.
As I said before, there are spaces online for parents to learn. Places for parents to get support in parenting by taking a seat and listening to the real experts.... Support that does not come at the cost of their child's humanity. Some spaces that are doing it right: Ollibean
In addition to that, there are TONS of disabled adults blogging and talking about their lives. You just need to look and you'll find them.
Very good piece, thank you. Craig from AustraliaReplyDelete
So spot on. Thanks Lei.ReplyDelete
Spectacular! Thank you!ReplyDelete
Thanks so much for writing this. I will definitely be tweeting this. :)ReplyDelete
You are absolutely correct. I have felt that the mighty is off, that it doesn't represent my feelings as a parent, this is it exactly. Thank You.ReplyDelete
The limitations of questionable awareness, drip-fed support, wobbly alliance, inspirational messages, of grinding on with giving pre-eminence to looking to non-autistics for a way ahead... it has to end now. Thank you for another nail in The Mighty Coffin.ReplyDelete
The only "autism parent" is a parent who is also autistic. Time for parents and carers to step back. Advocate for yourselves under your own umbrella. Do not think you can speak for us.ReplyDelete