This week I have had the opportunity to really see what trained self-advocates think of those who are not able to speak and share their own experiences or opinions. I have been told over and over again by these trained self-advocates that as a parent/guardian, that my observations are self-serving and that “Nothing about us, without us”, the catch phase of self-advocates has nothing to do with guardians.
Sara Luterman, editor of NOS Magazine, wrote “”Nothing about us without us” refers to disabled people. Since you are not disabled, it’s not about you.” Ms. Luterman sent me a link to an article she wrote in The Thinking Person’s Guide to Autism and then added “You may find this helpful, particularly, ” Just because someone has difficulty voicing a coherent opinion, it doesn’t mean you get to hoist him or her up like some kind of grotesque ventriloquist dummy.” Thank you, Ms. Luterman for letting me know what you think of people I know and love.
Ms. Luterman makes many assumptions regarding the role of a guardian and clearly does not understand the legal and court appointed responsibility that a guardian has – that is to represent the person in their best interest. If this role is denied, I’m curious how these trained self-advocates involve and understand those who are not able to voice their opinions to those who do not understand them. While pushing their agenda forward without understanding or allowing those with guardians to share their perspective and needs they are practicing discrimination against those more vulnerable than the self-advocates who can read, write and speak themselves.
The censorship that is practiced by several groups of trained self-advocates makes it appear that there is unanimity in their advocacy for people with intellectual and developmental disabilities. In fact, the opposite is true. Even when people write “I am interested in others perspective on this, other than my own” the editor will not allow another perspective to be shared.
This is one reason that I write on this blog – to share other opinions and learn from others. I have learned a great deal by the fact that I have been blocked from several sites that are run by trained self-advocates. They have no intention of understanding the needs of others and are acting like selfish adolescents who are rebelling against their parents. Will they continue on their developmental path to adulthood?