Free Your MInd

Our children are growing up and growing old. As fun as it was to watch them as infants and sweet young children, we have to accept the fact that our children are maturing and will age. My son is on the brink of becoming a teen. What I have spent the past three years doing is asking myself what kind of quality of life and standard of living I want my son to have when he is grown up.

Part of the reason for my unusual point of view in this blog is an attitude driven by the idea that I want my son and everyone who is disabled to live as autonomously as possible. I want my son and all his peers to experience the best quality of life they can. I want my son and his peers to have the opportunities to succeed and excel in life without losing health benefits, food stamps, and other supports that sustain them. I want my son to be completely included in our community and respected in society as he is. I want my family to understand that my son's future should not be tied to anyone else's. The world should be such that he can live his life without feeling he needs me to be alive to live it with joy. No one, not even his mother, should make him feel dependent. He should feel empowered.

This attitude is why, when being asked something by Landon Bryce one day a long while ago,  I was unable to answer. It had to do with whether I considered myself an autism parent blogger. I really dislike the term "Autism Mommy Blogger". I didn't want to be called that. Because it is used in a derogatory way, to diminish the women blogging. The majority of these women are highly educated authors, journalists and career women who made life changing decisions to be there for their autistic children. Others are dedicated stay at home parents who are self taught advocates for their own kids. None deserve to be marginalized because thousands of other parents read what they write and hold it in higher regard than someone with a background in journalism or science who is not autistic, or has not parented an autistic child. But facing this question from Landon, I could not put this all into words. I could only say, that I did not want that label. I did not want my son to be diminished by my blogging about him. And not all mom bloggers understand that attitude or care. Some are destructive of their children in their blogging and I did not want to be part of that either.

So understand that blogging was something I started to help gain a voice for what I thought my son and his nonspeaking autistic peers deserved for their future as adults. I don't believe a goal of living above the poverty line is an unreasonable goal. I don't think living autonomously is an extreme goal for a nonspeaking autistic person either. In fact I know nonspeaking autistic adults who do live autonomously in their own homes. So the question was how could I write to explain this to other parents? How could I make them understand that the rhetoric they have been given all their lives, that they must somehow survive beyond all hope and be healthy because their lifework is now to be a caregiver for their nonspeaking autistic child for as long as that child is alive is a recipe for disaster? How do I make other mothers see that there is a better future for their children that does not necessarily include them? Because once the problem is defined properly, it can be solved. Autism parents are determined, tough, patient, and focused people. Imagine if all these characteristics were bent towards finding a solution to the problem of where their children could live out their lives autonomously and how to keep them living a good quality of life. I felt that if I could accomplish that change in thought process and attitude, all our children would be safer, happier, and included in their own lives. Parents would be relieved, less stressful about the future, happier now.

So far, I've failed to reach most adults. Perhaps that is because I am not writing about the tough day to day aspects of being an autism parent. Maybe because I am saying I love my son as he as and am proud of him. Or that I reject Autism Speaks, who does not seem to get the faintest idea of how to advocate for my son and his peers because it refuses to include autistic adults in the leadership of their organization, which professes to advocate and speak for them. I do not know, but I do know that I am not reaching the people who I wanted to try and tell that life does not have to be as others have said it will be for our children. I now wonder if I should simply cease trying.

I don't really know where to go from here.  Maybe I should spend some time telling you all what is already out there that can change your children's lives right now. Right now, as state and federal governments are cutting funding from developmental disabilities programs (click me), autistic adults are teaming up to live autonomously and support one another living as independently as possible. Parents of nonspeaking autistic children are having that conversation about coaching their children in day to day life skills now. All that is great. But there is something we can all do right now. We can fight to insure that by the time our children grow up, they are paid what any other worker is paid for equal work. We can fight to insure that all our nonspeaking autistic children are assessed and accommodated with AAC devices and that the law insures that their speech devices are never removed from their reach. We can form communities for autonomous living as parents and built our own cohorts of classmates, playmates or friends that can live together and share a home or large apartment and adapt the homes for them so they can live as autonomously as possible.

We have right now, so much technology that can make a nonspeaking autistic adult autonomous. We are just so focused on the tragedy model scenarios of us carrying our children on our backs for their entire lives that we are not demanding our schools prepare them for life on their own. Our children are ABA "therapy-ed" into learned helplessness. We are fed a litany of what our children cannot do to such an extent that we become helplessly trapped in a mentality that says our children will need us until they die.That mindset is a type of learned helplessness as well.

We now have driverless cars that use GPS and onboard computers to navigate traffic. We have robots that clean carpets, toilets that flush themselves, all in one machines that can wash, dry and even steam clean laundry. We have dials on showers that keep users from dispensing water hot enough to burn.  No autism parent is thinking about how these things can make their children's lives more autonomous. What is out there is literally thousands of autism blogs saying the same sad and tragic things. I don't want my blog to be one of the thousands abandoning hope and wallowing in despair.

How can we change things right now? How can we make a future for our children that no one believes is possible? First change our attitudes of what the future means for our children. Yes, our nonspeaking autistic children can live well without us. Yes they can. If we help them. Believe your child can leave home just like any other child. See yourself being proud of your grown child living autonomously. Then join me. I"m telling you what is out there for them will blow your minds.

The Murder of Torrance Cantrell: Towards Revising the Religious/Moral Model of Disability

"[We] didn't do nothing wrong," the pastor, David Hemphill, told the Milwaukee Journal Sentinel newspaper.
"We did what the Book of Matthew said... all we did is ask God to deliver him."

Torrance Cantrell

On August 26, 2003, Torrance Cantrell, an 8-year-old autistic boy, was brutally murdered during one of a series of church exorcisms on him.  Apparently, Torrance's mother had been taking him to Faith Temple Church of the Apostolic Faith three times a week in the weeks prior to the murder in hopes of "curing" his autism. I cried even imagining what terror this child went through.

This murder is a terrible consequence of the moral/religious model of disability, which historically fosters viewing disability as a punishment, an evil curse, possession, or a spiritual malady to be fought against. Parents presented with the medical model of disability when their children are given a diagnosis of autism combine that point of view with a predisposition to the already ingrained religious model to perceive any impairment their child has as something needing amelioration. Parents who have already been exposed to years of subliminal ableism within their faith-based community life then look for any means necessary to "heal" or "normalize" their child. Autism becomes an anthropomorphic being that is made the scapegoat for the child's differences and attacked. The imminent danger is, you cannot separate a person's neurology from their brain and physical body. So this approach to disability, particularly in cases of neurodivergent children and adults, can lead to catastrophic ends.

What I have observed in accepting parents and neurodivergent disability rights activists who are also people of faith, is an active effort to educate their religious congregations on the nature of autism. Some go further, demanding acceptance and inclusion in their places of worship and the religious activities of their communities. I think advocates who worship need to go further still. Let's play what if.

What if, at the moment Torrance Cantrell was diagnosed, his mother had been presented with a resource list of faith-based organizations which understood autism and would not only accommodate her child's needs for support but provide them both a place of acceptance and hope. That single resource list might have made her a stronger advocate for her son, rather than a parent who bought into a demonizing disability model which ended in murder. It might have saved Torrance's life.

 If the parents and autistic activists are in a religious community which has revised the traditional moral model of disability to embracing neurological diversity, it may be a good idea to speak positively of those organizations so families and adults seeking religious support know there are places out there that are safe and empowering.

Inclusive religious organizations have a tremendous opportunity to educate their congregations to accommodate, support and include disabled members in their lives more fully. Community inclusion is not just tolerance, it is acceptance of differences and celebrating the human spirit.

 I applaud autistic disability rights activists and parent allies who speak out and provide templates of what they have done to bring their places of worship to a better understanding of the nature of autism and how to be inclusive of autistic people in worship without harming them in the name of curing them. I think these forward thinking activists' efforts may someday cause a quiet shift in the religious model of disability from a historical tradition of ostracizing, isolating, and breeding catastrophic attempts at exorcism and faith healing to places that breed acceptance and inclusion. I think this is the solution to overcoming this dangerously ableist disability model.

In memory of Torrance Cantrell, gone but not forgotten.