Years ago I met a family, when I was a behaviour consultant, who loved and desperately wanted to be good parents of their daughter with an intellectual disability. In conversation with me they said that they felt confident about being parents to the little girl they loved but felt inadequate about raising her to live well and safely with a disability. They said that their problem was that everyone they talked to about their daughter was helpful, but none had a disability. None could answer their very specific questions they had about living with a disability. I didn't really understand, at the time, what they were talking about. Not really.
I do now.
Parents try their very best, I believe, to do their very best at raising their children. I remember a mother, exasperated and angry at me for talking to her about her son's sexual behaviour, she had been told by a doctor that her son would be an eternal, never sexual, child. And she did what he suggested, she raised him without consideration of the skills that he needed to be safe from victimization or from being accused of being a victimizer. After venting her anger at me, she wept with frustration.
Some might have accused her of wilfully ignoring her child's sexuality, or of wishing it away, or of being hyper controlling. She was none of these things. She wanted to love and parent her child well - and she followed the advice of a doctor. When she met this doctor, she said, she was desperate for answers - and he gave her answers. He took on the roll of 'shaman' and she took on his view as her own. This isn't an abdication of responsibility, it's acting responsibly.
It's easy to be angry at the mother in the blog posts from a couple days ago. And I was. But I tried to imply in my writing that she was following what, for some, is considered best practise. I'm sure that she is terrified about making a mistake, raising a child that is like you while being very unlike you can't be easy. The philosophy of integration at all cost, inclusion or death, is taught as gospel to parents by other parents and by professionals working for organisations which have adopted an almost 'anti-disabled' zeal in their desperation to keep people with disabilities separate and apart.
She angered me because of what she did to me and what she did, by extension, to her son. She angered me for pulling her son away forcibly. But then ... if she feared, because she believed that what was happening was dangerous, that her son was in danger of becoming ghettoised ... well parents doe all sorts of things to protect their children.
I feel for parents - who are mostly trained by non-disabled people about how to raise disabled children. Parents, like the one's who visit here on this blog, are doing so I believe primarily because they are open to learning from voices, not just mine but all who comment here.
We have a role in parenting the next generation - we need to be able to hear the voices of parents and answer questions that they may have.
So thanks to the family members amongst the family here on this blog. Please encourage others to learn from people with disabilities, what children with disabilities need to learn from them.