The Mayor of Jerusalem made some remarks during the opening of the icare4autism conference yesterday morning. The organization intends to have a home in Jerusalem and while they seem to be doing a great many wonderful things, there are a few things that are not so wonderful. The following is a letter I wrote and sent to the Mayor’s spokesperson yesterday.
“Dear Mr. Mayor,
I am a writer and a mother of an Autistic child. I am writing a piece I intend to submit to the Huffington Post about the Icare4Autism conference and Jerusalem’s involvement.
I am in regular contact with a number of adult Autistics, both verbal and nonverbal, who are deeply concerned with the amount of press (almost all negative) that autism receives. The autism = tragedy model is one they vehemently object to as well as the fact that they are rarely included or invited to be on the boards, advisory committees or consulted when organizations are formed or policy is made about them. I am hoping both you and Icare4Autism will consider their concerns and am interested to know what you are planning for the future in this regard.
Will you consider including autistic people as advisors, at the very least, who can help in creating better awareness and understanding not just in Jerusalem, but in the world? You, Jerusalem, Israel and your association with icare4autism have the unique opportunity to do something none have done to date – work with and help develop an organization that changes the public perception of autism by including Autistic people. But this will require more than just one or two token Autistics, it will mean truly giving Autistics the opportunity to be a part of the development of policy and organizations meant to help them. Autism is not a tragedy, however public perception of it is.
Autism is a neurological difference from that of a neuromajority. Suggesting cures, promoting imagery that is depressing with melancholy music, showing Autistics as burdens who are broken is something that in the US is sadly the norm. The single largest Autism organization in the US is Autism Speaks, an organization that is abhorred by a massive number of Autistics. The prevailing perception of autism as tragic and a devastating crisis creates more misunderstanding, panic and fear. To be Autistic, to feel that your very existence is in jeopardy because of organizations intent on “cures” only increases that fear. None of us make good decisions or behave well when fearful.
I hope that you will consider the Autistic adults who are speaking out, who are asking to be heard, respected and given a say in organizations which use the word “autism” as part of their identity.
I would love to include a quote from you on any of this.
Thank you so much.
All my best to you and your vision for Jerusalem and autism,
I am going to meet with the head of the icare4autism organization this morning and will speak with him about these concerns as well. Keep your fingers crossed and wish me luck!
The photograph below is of the Autistic Boys Choir. They performed yesterday at the opening. People were openly weeping. The performance was terrific, their voices exquisite, the joy infectious and a wonderful example of what “Autism looks like.”
The moon over the Old City last night