Lately I have seen some parents suggesting that their “Lighting it up Blue” is different – because they have their own kind of family meaning or tradition for it and do not associate it at all with Autism Speaks.
When these people hear that #LIUB is uncomfortable, and that it is considered disrespectful by many Autistic people and those who support them, they seem to defend their position by saying things like: ‘It is okay – we don’t all have to agree… we are still working toward the same goals and I am supporting my child.’
The thing is… this is a little different from being ‘not in agreement…’
For one thing this is blatantly disregarding the voices and perspectives of many, many Autistic people. In fact, not one of my Autistic friends is in favour of “Lighting it up Blue.”
Think about it… this dismissive disregard is identical to the stance that Autism Speaks takes when they exclude the voices and perspectives of Autistic adults.
So saying things like, ‘We are all entitled to our opinions and this is simply a difference…’ or ‘I am doing this my way because _____’ is actually ignoring and, through this action, even silencing the voices of Autistic people.
I have even seen some parents come into the space of an Autistic person, someone with lived experience – and when it has been explained that “Light it up Blue” and “Puzzle Pieces” and “Awareness” are offensive and even triggering, these same people have continued to defend their position.
What if instead of insisting their right to their opinion – they leaned into the discomfort of perhaps being wrong. It would be interesting to see what would happen if they tried to understand the impact of negative rhetoric and how this is embodied in blue lights and puzzles as a metaphor for this hateful cure mentality.
Because no matter what… these blue lights cannot be separated from Autism Speaks in the eyes of someone like my 16-year-old son… and no matter what a non Autistic person may think or feel about this… the perspective of the Autistic person should freakin’ trump it all.
Autism Speaks markets the light bulbs, and they profit from them – just as they profit from saying my son is a tragedy that burdens his family and desperately needs to be cured of his neurology.
Those blue lights are a huge advertizing campaign for Autism Speaks, and they are the embodiment of fear and stigma, wrapped in the hateful blue cloak of awareness.
They are disheartening to see… a beacon of shining blue that proclaims to Autistic people – we are aware of you and you are not enough… you need to be fixed… but your humanity is so lacking we won’t even include you in the conversation.
This is not about me – or other parents… it is simply about listening and being responsive to what Autistic people are saying about what is best for them. Perhaps I can consider it like this… if someone in another culture told me something I was doing was offensive to them – I would stop. I would not try to justify my position; this is pretty much the same situation.
I listen to Autistic adults because they are living the experience of being Autistic, and they have understanding and insights that are far more useful than any book or program I have seen created by one of my professional colleagues.
I listen to Autistic adults because they are the best guides for me in supporting my actions with my son and in helping him to grow up into a proud and well-adjusted Autistic man.
I listen to and then amplify the voices and perspectives of Autistic people to support the roar of their disdain, not just because it is the right thing to do… but because this is how we will create the world as it should be.
30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.
© Leah Kelley, Thirty Days of Autism (2015)