Sunday, May 27, 2012

Autism in Ireland: Protesting Service Cuts

Shannon Des Roches Rosa
www.thinkingautismguide.com

Updated extensively on 5/28, as the photo in question was removed from all TPGA pages by request of the parent and the photographer, so the photo-linked TPGA Facebook thread this post referred to was also removed -- and now context is needed. -SR

This photo may not mean what you think it means. So let's get that cleared up, because the Irish government is putting autism families and people with disabilities in dire straits, and that's where we need to focus.

The photo was of a little boy at a protest regarding the Irish government's cutback of in-home support services (called entitlements in Ireland) holding up a sign with his own photo and the statement "If you take away my entitlements, can you take away my autisim [sic]?

There's a chance that, like me and like many other literal thinkers, you see this sign as asking "Can you take away my autism?" and supporting a political stance that is harmful to autistic people. This kind of campaigning is unfortunately common in the United States (though I will not give such fear mongerers additional publicity by linking to them). These attitudes are contrary to TPGA's mission, and we speak out firmly against them. I protested the sign vehemently on TPGA Facebook for this reason:
It is not OK to have a child carry a poster that proclaims them broken or damaged. Not ever not ever. This is not support, this is not awareness -- this is public shaming. If you don't understand why, let's talk. -SR
But then I heard that those parents were not trying to demonize autism, and that is not what the sign is meant to say. And this is the information you need to know, and help others understand:

This protest is taking place in Ireland, where sarcasm is part of the cultural fabric -- the sign is not meant to be taken literally, but ironically -- this family believes the entitlements (supports) the Irish government is threatening to take away from Ben (the boy's name) are as much his right as his autism is a part of him. You can't take away his autism, and you can't take away his rights. This is meant to be a message of autism acceptance. (Though I hope folks understand why sarcasm can be problematic in an autism context of frequent literal thinking.)

This sign is protesting widespread Irish government cutbacks to critical services such as in-home support (domiciliary care) for autism families and people with disabilities. Trish Flood has two autistic children and was recently informed that she would no longer receive a carer's allowance for one -- she had to take the matter to High Court. Trish had this to say on TPGA's Facebook page:
"I love my children more than anything and i will do everything in my power to ensure they live happy and independent lives. [But] Without government support, we cannot keep the roof over our heads, as I cannot be a full time carer and hold a job at the same time."
From Inclusion Ireland CEO Deirdre Carroll:
“The situation for people using services is growing increasingly bleak, as services continue to be cut, and charges are introduced in areas such as respite and transport. Given the economic situation, it unfortunately looks like this will continue, which causes massive worry and stress" 
The present and future are worrisome times for people with disabilities in Ireland, and their families. Please let us know what further actions we can take to get the right messages out, and influence the people who need to be influenced.

----

However, as I also wrote on the deleted FB thread, I hope Ben's family understands my concerns about the sign's long-term impact:
I think we all understand *in this thread* what the point of the sign was. That's not the issue. The problem is this photo no longer represents the family, or their cause. This photo now belongs to the Internet. You will never be able to remove it [specific instances like TPGA, yes -- in general, no], you will never be able to explain the context every time it appears. And every time someone who wants to cure autism or deny the rights or entitlements of autistic people like Ben or my son and their adults peers Googles for a graphic for an anti-autism diatribe, this photo will appear up with the caption "take away my autism." So while I understand why Ben and his family would be upset by the reaction this photo has generated -- and while I wish it never had to happen -- the potential for harm is very real, long lasting, and is bigger than hurt feelings and cultural crossed wires. -SR
And I also want to express my concern about the way autistic adults who protested the sign were treated. Also from the TPGA FB thread:
I am disturbed by the way this conversation has gone. As an autistic adult I get told to "not judge" and to "not sound so angry" all the time, usually because someone didn't understand the context or look at where I am coming from. Yet I am seeing judging, anger, et cetera [...] from people who tell me not to do this. I don't understand. Nor do I understand how sarcasm is an effective protest technique ... especially because it is hard to catch sarcasm from a sign. -KS [TPGA editor Kassiane Sibley]
Many autistic adults have indeed been bullied -- and in some cases threatened -- over their protesting of this not-at-all-clear sign (though many other folks calmly and clearly stated what the sign's intention was). Bullying and threats are never OK.
Anyone who parents or cares about an autistic child needs to think about how they'd like people to speak to their child when that child is grown. And I am writing this as a parent of a non-speaking child who receives the U.S. equivalent of domiciliary services, and as someone who would be on the front lines of the protest, were I to live in Ireland. Asking for respect is not about "severity" or whether or not one's child communicates typically. It is about rights -- the right to not be bullied or threatened as a disabled or autistic person. -SR