Will the real Autism Acceptance Project please stand up?
Filed Under (Activism) by Estee on 07-02-2013
Today, I was informed that the name of the organization founded by myself but built with many autistic people, both verbal and non verbal, was taken by the creator at this site here. Ms. Zalzal, the creator of this pretty site is a web designer and built it as part of her senior exhibition project for Troy University’s Design Technology Innovation Program. This site was created in October 2012. The only problem is, the name belongs to the original Autism Acceptance Project, founded in 2005.
After trying a few portals to contact the creator, Ms. Jennifer Zalzal, I heard from her this evening. Honestly, many of us were not happy with her site. At the moment I cannot link you to the home page, which I have printed and screen-shotted (it’s no longer on her site), which reads:
“Through my research I have come across a similar campaign with the same name as the one I am branding/promoting. The Autism Acceptance Project (TAAP). Their mission statement works to promote acceptance of and accommodations for autistic people in society. The Autism Acceptance Project will bring forth a different and positive view about autism to the public in order to create tolerance and acceptance in teh community and to empower parents and autistic people.”
She then goes on to say,
“I think this is a wonderful statement and cause, but I would like to specify how my campaign differs to confirm my motive. My acceptance campaign is devoted to promote the acceptance and accommodations for people and parents suffering with the spectrum, similar in some ways to TAAP. The research and information I provide on my website is fully based on personal interviews with medical professionals and most importantly parents of autistic children. I want to give the viewers of my site a look at autism from behind closed doors and through the voices of those who know them best….I want to educate people on the truth of the matter.”
Today in an email from Ms. Zalzal to me, she stated that when she did her research she “did not come across your site.” I have been in email correspondence and am trying to explain to Ms. Zalzal why this is so problematic, and in the meantime, hope to support her in her efforts to accept autism…that is, before I realized this discrepancy. Her site is ableist in nature, so we find it difficult to support her premise. Let her do so on her own platform and identity, not ours!
As a critical disability scholar, I have to also be critical of our own agenda. When we wrote “positive” views about autism, this was in 2005. No one was saying anything positive about autism at the time and autistic adults had started something called The Autistic Adult Picture Project in order to project the image of real autistic people and living in society. Jim Sinclair, Frank Klein, and so many others wrote seminal pieces towards autistic equality and inclusion. Dr. Dinah Murray, autistic herself, created a video You Tube Channel called PosAutive which accepted submissions from autistic people of positive contributions in order to upstage the miserable portrayals of autistic people that were rampant in parent autism campaigns as well as by autism societies and Autism Speaks. Let me be clear as well that although I’m a non autistic parent who founded TAAP, I took a lot of critiques myself from autistic folks when I had the idea to start it. Critique is essential. It helps us to learn and grow. My commitment towards my son’s inclusion and acceptance in society reminds me everyday to look deeply at issues and my own internal bias’. I think it’s also important to send this reminder that many people were working assiduously (and still do today) to counter the portrayals that were, and are, seen by autistic people as oppressive and a threat to substantive equality or equality of opportunity and well-being. These ends are not served when we speak of parent’s suffering, which then leads to the discourse of burden. These movements in the early 2000′s, along with other disability rights activism, was an important shift to the view about autism acceptance, and in a minute, you’ll see how Ms. Zalzal threatens to undercut it. And this folks, is how “innocently” discrimination is materialized. Surely every experience is complex, and critical disability discourse enables this conversation, but let me reiterate that positive portrayals at the time were a necessary counter-speak to the misery-speak so predominant at the time. A few years later, many more people speak to inclusion and acceptance, although we haven’t yet attained it as a legal right in society.
I’ve also critiqued the way notions of acceptance are interpreted, and as we see on Ms. Zalzal’s version, it’s not quite acceptance when the “truth” as she puts it, comes from “parents and medical professionals.” Truth is a really sticky thing. Hang a sticky strip of truth and you’ll catch a lot of flies and they’ll just die. What is truth? Whose truth? It’s not a static concept! The other fundamental problem with her presentation of “autism acceptance” is that it excludes autistic people. Apparently, according Ms. Zalzal’s preamble, parent-truth is more important truth, and autistic truth is not necessarily that important. In a world that has worked so hard for disability rights and inclusion through various Human Rights Acts and international policy instruments, excluding autistic “voices,” is a violation of these fundamental rights. But hey, people trample on them all the time, right? Does it make it right to know something exists and pretend it’s not there?
When something very problematic comes up, it’s important for us to talk about it. I’ve asked her to please change her brand and return the TAAP identity to us as so many autistic people worked on this not to mention the years it took! Ironically, taking identity so easily is a fitting metaphor to autistic people having their identity taken from them by people who are not autistic. This to me speaks volumes about her other site/campaign.
Also, last year our website www.taaproject.com was hacked (not in connection to this) so this was another blow to hear that someone just saw our name and said “hey I’m just going to take it and make my own campaign because I think I can do this all by myself.” Advocates who can endure the criticism of their good intentions have the potential to be better advocates. Many people have ideas and they think they can run their own campaigns. When they press up against resistance from the community they claim to represent, it’s really important for them to listen. As one of my profs said to the class, “take it in the chin!” The problem is, Ms. Zalzal’s campaign rests on nothing save for her own ideas. Excluding voices does not make for a campaign. If people wish to join campaigns or make them, there are some fundmental rules:
1. Don’t take other people’s intellectual property and admit your’e doing it on your homepage and then write an email claiming you didn’t see us in your research;
2. Get involved with the community you are claiming acceptance for. Don’t speak on their behalf;
3. Recognize the problems of representing the medical model and parent model in a movement that has struggled with years of oppression by these very models.
From a critical disability standpoint, although I do believe all voices are important, Ms. Zalzal’s campaign is heavily weighted on hearing from the parents who “suffer” and hearing from medical professionals (in the name of “truth” about autism) who we need of course, but whose history with disabled people are complicated and paternalistic. Please see my blog post yesterday. I care about parents. I really care about autistic people as I have a wonderful autistic son in my life. I live with the complexities every day and I have chosen to live with them carefully and reflexively. I have not chosen the easy path. And believe me, I’ve taken it in the chin, and I’m quite certain I’ll have to again. I still support Ms. Zalzal in her growing process and to join the larger autism acceptance movement through various organizations and rights activists. I hope we can all encourage it.
ESTÉE KLAR
Considering the fact that TAAProject is FIRST in Google searches for the name, I think Ms Zalzal is talking out her you-know-what.
I was appalled to hear about this blatant theft. It would be bad enough if she wanted to do a remake of your site, from the same autistic-centric POV–but to take the name and make it into yet another whiny parent site? That is just foul.
Next she’ll dig out archived versions of your site and post them on her site, as a favour to you, or the world, or someone….. Whose wrong planet? Good luck Estee.
Yay! My blog just suddenly returned. I’ve been trying to get in and my FB users were stating it was down in the wee morning hours. We’re not sure what happened. I honestly can say that many people do think that just taking an identity without permission isn’t right. This is a real ethical issues. While none of our ideas are truly original, when we write for instance, we must tether our ideas and give credit. TAAP, however, is an eight-year-old registered Canadian charity with international reach. We have a squatter, folks, and I’m trying to urge her to reconsider her domain name, not her right to free speech. It’s definitely been upsetting for myself and for the team who have worked long and hard on this. This is a completely new experience for me and in many ways I think about how autistic people just get trumped and voiced-out by other dominant voices. I’m talking of the mission of the other site, which I mentioned in this post.
I have followed TAAP since it started its activities in 2005. That other site pales in comparison to the work that you do, Estee. I saw that site when this started and it is awful that someone can take all that you’ve built. I just want to let you know that you have me rooting for you.
I attended the lectures and exhibitions in 2005 and 2006. The Autism Acceptance Project changed the dialogue about autism. Here in Toronto the exhibitions were packed! As a professional, I was so impressed with how TAAP organized and how many autistic people were present to represent themselves at the lectures too. It is unfortunate when others do not respect intellectual property and likely this young woman did not recognize the nature and scope of this wonderful project. I too have followed TAAP for years and echo the sentiments of Angela.
I have an idea! I’m white, but I can interview neighbors and coworkers of black people and start a group called the National Association for the Advancement of Colored People.Because black people just don’t understand those things themselves after getting bad educations in the ghetto.
If someone tried that, imagine how well that would go!
Thanks everyone. I think we have to fight for what’s ours and I thank you for your support. This has been pretty awful and I don’t wish any harm on anyone, although harm has been done to us. I don’t like to think that the world is like this, but alas internet security and identity matters are sensitive. After this is done, I want to write a piece on organizational security, notions of identity and the Internet. Our group is both local and internet driven. The internet is a powerful source of communication for many non verbal autistic individuals as well.
Kathryn, your point is well taken, and I agree the approach of the pirate site is very problematic.
With further regards to TAAP, autistic people sat on the board, volunteered and formed an advisory committee. TAAP is trying to relaunch a new project. Although Ms. Zalzal’s site perpetuates the oppressive model of disability, and lacks serious self-reflection, at the moment it’s not our prime area of concern because our identity still has not been returned. Taking our intellectual property is so wrong. Autistic people contributed to TAAP and although all of their artwork and stories are presently missing from the last site, they will be up again. A new TAAP board is also in the works and new process for emancipatory org/process. So much time of human and investment and someone can just come along and snatch it away? No. It’s not right. The people involved with TAAP do not deserve this. I wouldn’t wish this on anyone.
I’ve followed TAAP for some time, at least 2009 or so.
I have an idea! I’m white, but I can interview neighbors and coworkers of black people and start a group called the National Association for the Advancement of Colored People.Because black people just don’t understand those things themselves after getting bad educations in the ghetto.
If someone tried that, imagine how well that would go!
The Autism Acceptance Project has been an important part of my own learning and the autism advocacy movement since 2005.
The work of TAAP is important. I have followed this site since 2005 and I have learned so much about the message of advocacy for autism.
The work of TAAP is important. I have followed this site since 2005 and I have learned so much about the message advocating the rights of the autistic community.
Thanks for the support. This came about because one of our major donors found the other website and was appalled. When people do their master’s thesis work, they have to go through ethics committees. In all my years of having my essays and articles public, I’ve received many written permission requests to quote my work. This was not the case with the project I cite here. Still, I would not have given the permission, because this constitutes a replica or our website with some very problematic undertones for the autisic community, however, I would have helped with ideas from which this person might have build a more solid project of her own. It is really difficult when people use your material and turn it aroudn with an intent that is very problematic for our own mission. Our TAAP material was quoted directly and rebranded, and we were not asked for any permissions. I think this is not only hurtful and damaging, it’s unethical. We have compelled the other site to promote their campaign under their own banner.
As for the concept of charity and autism, that’s a related but a separate matter to the intellectual property. As many of you know my work, I am a Critical Disability scholar and our work in this field looks to the oppression of disabled people by charity that began with such places as leprosariums. Although leprosy is not contagious, society did not want to see people “with” it and were relegated to the edges of towns and isolated. By the time we reach Enlightenment, society also casts out the disabled by creating charitable asylums. Charitable handouts to the disabled have been protested for years by disability rights communities – look up the Jerry Lewis Campaign. The model needs serious discussions within our current economic structures in how it continues to margainlize disabled people.
I am writing this because there is a rather popular idea out there that all people should *do* autism charity and “work together.” As for working together, I *love *that notion. Yet, there are people working at different ends of the wick here, and there are many ideas and attitudes about disability, even from within the disabled community. Working in unison, therefore, is an idyllic but empty concept when it ignores serious campaigns, the voices of autisic people, and struggles to be recognized in human rights commissions and charters and the laborious work to receive legal status as equal citizens. Charity often continues to undermine these very goals of the disabled community.
My work, and the work of TAAP seriously questions these issues with a dialogue and in consulation with autistic people themselves. We often don’t get it right, and we take the criticism in order to learn how, as our mandate states, “help autstic people contribute to society as autistic people.” The point is, we have to work at it and in consultation with many people.
As the TAAP founder, I have to say to everyone that it honestly has hurt to have ideas taken without permission. I still offer my support to anyone else who wants to learn how to build an awareness campaign, and anyone is free to listen or not. I do not agree, however, with taking a name or an idea without permission and I think this unfortunately creates unnecessary rifts that can still be bridged.