Much has been said about who says what, and who we should be listening to when it comes to advocacy, activism and raising awareness in the disability community. Advocates who are also individuals with a disability have often felt ignored or disregarded. Parents and advocates who do not have the same disabilities have been suggesting that now they are being offended or hurt when the (self) advocates demand to be heard. I believe I have seen this the most in the autism community. So, not only do advocates,parents, and friends find themselves working for responsible awareness raising, advocacy for the mere basics in services, education, and other areas, but the ongoing in-fighting can really bring good advocates to their knees. I saw some individuals responding to the question: “Who has the right to speak about autism?” the other day. I found their responses remarkable, articulate and fascinating. I also thought that more people should have the opportunity to hear them. I asked them both if I could share their responses and they agreed. I hope this is educational and helpful for the greater community.
Lorin Neikirk shared the following:
…..”as a person on the spectrum, here is my opinion on the topic…Anyone has a “right” to talk about autism, but when an nt tells an aspie/autie what their “autistic problem” is, or what their intents are, I have an issue with that. When a spectrum individual says they have a wide range of emotions, I have a problem when a neurotypical “expert” contradicts that. One SI (spectrum indiv) can’t speak for every SI, but s/he is a lot more likely to be on target with surmising other spectrum opinions… Just as a man is more likely to understand men in general, better than a woman ever could. For instance, I can say I don’t appreciate people trying to cure autism because it implies I’m defective, and I’ll bet most other SIs are with me on that. I’ve never heard one spectrum individual say they wanted to be cured, or that they wish they weren’t autistic. Frankly, it’s generally the opposite- I’ve heard or read most individuals saying they are glad they are autistic, not nt. Tell me there should be a cure and I’ll feel like you don’t get it… because “curing autism” means “curing” who I am, as a person, and who they are. We like ourselves, why say we aren’t acceptable, we need to be cured? Anyone has the right to talk about autism, but with the right comes responsibility. If one truly wants to help those with autism, perhaps the solution is to listen to our collective voice, and what we have to say, and not say how wrong our opinions are, when they differ from those of nts. (Why nts insist on making assumptions when all it takes is asking the question… I will never understand that.)
Aside from all that, I do think that the spectrum and neurotypicals need each other… so once we start working as a team, we can get some great things done!”
Larkin Taylor-Parker, who wrote an article about it here, shared her opinion as well:
“I trust your intentions. You parents love your children. I do, too. When something bad happens to one of them, it means days without a good night’s sleep for me as it must for you. I am desensitized to human suffering. I grew up in hard places. What still hits me like a blow are stories of a kid like the one at your dinner table being bullied, mistreated, denied an education, abandoned, killed.
Daily care, unending worry, give you a place in the discussion about the future of autistic people. The decisions society makes will effect you for the rest of your life. No reasonable advocate would suggest we should go it alone. Your best contribution is to share your experience of parenting. Saying you can understand the autistic experience as well as we can is like being white and saying you understand the black experience as well as your African American friend. You can care. You can get involved. You can ask us. Your help will be appreciated by all but a few radicals. Still, your perspective will always be an outsider’s. Your descriptions of our experience will never carry the weight of our own.
I appreciate the admission of occasional failure. I hope you understand that we have to call you on every new slip. When parents raise money for Autism Speaks so they can make more videos implying we might be better off dead, I will speak up. When they set low expectations that will prevent children from living up to their full potential, I will say something. When they refuse to let their kids experience occasional failures, part of a full, healthy life, they can expect to hear about it. When they suggest segregation is in an autistic person’s best interests, I will tell them they are wrong.
I badger you out of fear for your children. Comments that said many of us speak out of pain were right, but you should take that seriously. As a child, I was so forcefully trained against my own instincts and desires that I have trouble knowing them. I have difficulty wishing, dreaming, creating and articulating an “I want” distinct from what is practical, moral, or proper. If you listen to those of us willing to be cautionary tales, you might not repeat our parents’ and teachers’ mistakes. The overriding goal of my life is that your son or daughter will have it better. If you listen to our experience instead of telling us what it is, you will learn. You will know what is likely to hurt your kid. You will understand what looking normal costs us well enough to make informed decisions. You will be an ally instead of another assailant. If you accept that you approach our experience from a position of ignorance, you can learn from years people my age spent as guinea pigs. The outside world is dangerous enough for your kids. Give them safe homes.
One more thing:
Make no charitable assumptions about me. If I chew you out online, I mean it.”