I want to be wrong about Julia

Earlier this week I posted to my Facebook page a few thoughts about Sesame Street’s new puppet, Julia, who “has autism”. I’m putting those thoughts here, for reference, and following them with some further thoughts having now watched the new videos including Julia that have been added to the Sesame St website. 

1. The fact Julia “has autism” tells us that the autistic community was not closely consulted when developing this character. If they had been, Sesame St would say Julia is autistic, as that is the identifying language preferred by most of the autistic community. It is a deliberate choice to use identity first language instead of the popular with parents and professionals use of language that “puts the person first” so folks don’t forget that autistic people are in fact people.

2. In introducing Julia the media is reporting a lot of stereotype and stigma based rhetoric, which they are getting from interviews with Sesame St employees. This is because the employees involved in the development of this character are not autistic. Some are parents of autistic children who are being presented as experts in autism.

Please remember: the only true experts on autism are autistic people themselves.

3. Julia is not a new character. She was first introduced in 2015 as part of an awareness raising campaign (more about “awareness” another time, but those of you who’ve known me a while will probably know what I think of that already). Autistic people spoke out then about the problematic nature of the character and the way she is portrayed.

My favourite article about this was written by Erin Human. You can read it here: https://erinhuman.com/2015/10/23/not-in-love-with-julia/

My favourite quote from the article is “This digital storybook is the only place where Julia the autistic muppet appears, as a cartoon drawing. And yet, the book is told entirely from Elmo’s point of view, as he explains the things that Julia does and feels. Given the creative freedom of a fictional cartoon storybook, how is it that even in this format the autistic person can not be the narrator of their own story? Sure, most children are not autistic, but is that a good reason to sideline autistic children into always being the object of the story and never the subject? Sesame Street could, and really really should, do better than that.”

4. I really, really want to like Julia and the way she is presented by Sesame St. It is important to have representation of all kinds of diversity in media. Autistic kids sure could use a positive portrayal of themselves in mainstream tv, a role model who will help them learn about pride in yourself, the value of diversity, skills needed for self care and advocacy, the basics of upholding human rights, …. but I fear this won’t be it.

I’m totally willing to be proven wrong here, in fact I hope I am. But for now, I remain skeptical, and to be honest I’m wary of all the parents who are enthusiastically declaring their child will benefit from seeing Julia on tv.

Please approach this with caution and listen to the feedback that autistic people give it.

A couple of days after posting the above thoughts, and having watched the introductory Julia videos, I find myself just as conflicted. The videos  actually weren’t as bad as I expected, and there were some good things about the way Julia was portrayed. It is obvious that the creators have made an effort to present Julia using an atypical style of verbal communication, and that they have intentionally portrayed that as acceptable and valid. They have done the same with her atypical style of play.

But I am un-nerved in a different way. As I watched Elmo and Abby interact with her, I was left with a feeling that there was a power imbalance there. This was not a true peer friendship, but a dynamic where Elmo and Abby were considered to be the helpers of Julia- there to interpret and to fill the gaps she was not competent to fill herself.

In one video Julia and Abby are blowing bubbles together and popping them. The bubbles float out of Julia’s reach and so Abby, without asking what Julia wants to do about it, announces that she will pop them for Julia.

I know, I’m looking at tiny details in a kids show and I’m picking it apart. I know I’m going to be criticised for it.

But the thing is, in our society disabled people experience a constant stream of micro-aggressions that occur because we are seen as less able. People want to help, and they will help- whether the person they are helping likes it or not.

And in our school system it is all too common to see programs set up to help the disabled kids- buddy systems where the non-disabled are encouraged to, and rewarded for, being “friends” with disabled kids.

This so called altruistic behaviour is not actually helpful though (**). It sets up a relationship based on imbalanced roles, where one person helps another who needs to be helped and is rewarded for their efforts. I’ve seen promotional videos that say they are an example of inclusion, in which the non disabled kids feedback that they like having the disabled kid around because they “teach me to be a better person”, or they “have a lot to offer”, and other platitudes. But disabled people aren’t here to be a learning moment, and they don’t need to have stuff to offer to be valuable as a person.

The whole “I’m going to help you” and “I’m going to interpret for you” and “I’m going to look after you” aspect of the Julia videos I watched leaves me thinking the purpose of Julia has nothing to do with supporting Autistic people, and everything to do with teaching non autistic people how to tolerate us and to decipher the code to having us share space with them without disrupting it too much. I hope I’m wrong.

I wish it was about rights and advocacy and empowerment for autistic people. But I don’t think it will be. It’s an opportunity to show autism in media in a way that autistic people can relate to and be proud of, but I that opportunity may have been missed. And instead, to me it looks like it’s just going to be another neurotypical interpretation of how other people can help us and make our tragic lives better. Please let me be wrong.

**for more on the difference between real friendship and harmful helping behaviour, please read this excellent paper by Emma Van der Klift and Norman Kunc of Broadreach Training and Resources

And for a great article on Julia by Briannon Lee, that sums up my hopes and concerns really well, and more positively than I seem to be able to at the moment, please visit https://briannonlee.com/2017/03/21/julia-autistic-muppet-sesame-street/

You can watch the videos of Julia here: http://autism.sesamestreet.org/videos/kids/
Let me know what you think. (Comments on this blog are moderated, so they wont appear immediately. This is so I can read and think about them before they are published and then publish when I have time to respond, as well as giving me an opportunity to choose if I will publish at all in the case of comments that are aggressive, abusive, disrespectful of autistic people, or likely to be triggering for autistic readers of this blog.)

17 thoughts on “I want to be wrong about Julia

  1. I like you am wary but hopeful about the portrayal of the character Julia. When I first heard I was skeptical. I am on the spectrum and one cannot know what it is truly like unless one is. It is difficult to have one character represent such a diverse group of people.The creators may get better at it especially if they work with those actually on the spectrum . Perhaps this tide of “awareness” will benefit us all a bit.

  2. I want to be wrong about Julia, too. I don’t think I am. I have quoted the “Not in love with Julia” article you link to above many times, and fully support its contents. My opinion has not essentially changed so far, even after looking at all the material available.
    One thing that I also keep returning to is that there WERE those articles early on after Julia’s creation. There was plenty to time to fix some of the issues that have not been fixed. This leads me to believe the creators don’t intend do.
    One of the last things I need is another reinforcement of certain stereotypes that are already far too well propagated.
    So, yes… I would like to be wrong about Julia, but I really really don’t think I am.

  3. People need to give any prototype time. Nothing is perfect it’s first trial. Putting it out there and getting feedback from those who really know is the only way to help something grow. People are too quick to love or hate something and comment or criticize it rather then being part of the solution in making it better. The main goal here is to help children learn why others may be different and it’s not a bad thing. It is to help children yet adults are picking it apart? Yes, I have a child on the spectrum, I am not saying this is an accurate way to portray someone on the spectrum but would you rather not have it out there at all? If it’s not out there then kids don’t ask their parents questions and it doesn’t have time to fix itself and become more accurate, accepting, and helpful.

    1. Melissa, I think the best way to respond to your comments is to share with you what I wrote on my Facebook page this morning.

      “Well, I didn’t expect my thoughts on Julia to be so far reaching, and to attract so much discussion.

      Interesting to me is that the response from non autistic parents of autistic children to my words is largely that they don’t like what I am saying.

      I think a missing piece for many of you in this conversation is that you aren’t a part of the autistic community. What I am trying to get across in my article (scroll down the page to find it if you don’t know what I’m talking about) is that autistic people aren’t happy to have their lives represented through a character that is not voiced by them.

      I know it *looks like* Sesame St has done all the right things by consulting with groups, etc…. but what many autistic people know is that there is a long history of
      1. autism orgs not representing our wishes because they are not run by us, and
      2. of autistic run orgs being spoken over by non autistic run orgs and/or autistic run orgs being ignored unless what they say suits the pre-existing agenda of whoever is running the latest project.

      We know these things because we’ve seen it happen over and over and over again. We have a rich autistic culture and we talk to each other. We know who has done what advocacy and who has listened.

      In this case, Sesame St has listed groups they consulted, and we autistic people know that at least some of those would have said “we prefer to be called *autistic*”, not people with autism. Yet, Julia is not *autistic*, she *has autism*. Immediately (rightly or wrongly- though I suspect rightly) we are suspicious that they are not listening.

      I personally know people who were asked their opinion by Sesame St employees in the early stages of the project and they have told me that none of their input is reflected in anything they have seen in the #seeamazing materials so far.

      Now, I know that is not definitive evidence that they didn’t listen to anyone, but it is evidence that the opinion of the majority of a marginalised group has been pushed aside.

      What I am realising all this comes down to though is this: Julia was not created for autistic people. The more I think about it, read about it and then write to process my thoughts… the more I am convinced that Julia was never intended to be for autistic people. She was created by and for neurotypical people and so cannot and will not represent us. I’m just about ready to acknowledge this, finish processing my disappointment at another lost opportunity and move on.

      Before I move on though, I want to say that I think the tension here lies in the fact that we autistic people are looking for representation in media that empowers us, teaches our kids about strong self advocacy, models the upholding of our human rights (something we still fight for daily in the context of equal access to education, employment, and even just the basic right to not be killed by our parents and have it excused because we are disabled), and so when we see an autistic character announced, we collectively hold our breaths and wonder “will this one be for us? will this one be someone strong and relatable and allowed to be seen as a valuable human in their own right?” In Julia’s case, the answer seems to be “no”. And we feel disappointed.

      But, like many others, I will wait and see. I genuinely hope that in a few months I will be writing an article about how great a job Sesame St are doing with Julia.”

      1. Well said Michelle, I admire you restraint your reply and clarity in voicing our opinion of Julia. I say “our” meaning, the collective autistic community. Particularly as there has been huge response from actual autistic individuals.

        It is true that our voices may be asked for but rarely actually listened to and even more seldom are our ” informed opinions and suggestions” implemented.

  4. I think some of the noise from NT parents about this issue is a projection of their own feelings in not having reconciled that their child is different, that being different is ok. They haven’t reconciled that their child may never ‘fit in’ and come to a place where it’s ok for their child to find their tribe, to be their autistic self and to support that. A muppet is not going to change this, hopefully it may influence how children see difference. Until parents shift their view on difference and acceptance there won’t be meaningful change.

  5. Both my children are on the Spectrum, we watched some of the videos together and they disliked the stereotype that was protrayed . They especially didn’t like the hand clapping being turned into a game.

  6. I share your concerns, particularly about others speaking, or interpreting for nonspeaking autistics. Full disclosure: I am a non autistic parent of a nonspeaking autistic teenager. The “nonspeaking” or “nonverbal” label can be tricky, in that many with that label do speak to some extent, it’s just not their primary form of communication. Ironically, as many autistics have shared their struggle with understanding and interpreting body language, many nonspeaking people use just that, albeit often atypically, as their primary form of communication. Here is where my conflict with Julia’s interactions come in. On the one hand, they are “speaking for her”, and that’s a problem. On the other hand, neurotypical children whose primary form of communication is speech, often do not know how to interpret their lack of speech, and typical body language. This often results in them abandoning attempts to interact with autistic peers; they just don’t know what to do.
    Sesame Street has always addressed it’s subject matter in an Explain, Accept, Demonstrate, Step by Step manner, and I feel that this is in keeping with that. This is a new friend on Sesame Street that Elmo and others are introducing, and because she doesn’t interact or communicate the same way the viewing children might, they are explaining why and demonstrating how to interact with her. I think that is important as far as familiarizing children with how to interact, how to accept differences. That being said, I sincerely hope that this is indeed just the introductory and that as the character progresses, they address her autonomy, her ability to communicate her own wishes, etc.. I’d love to see Julia with an AAC device at some point. Honestly, I would be surprised, (and disappointed), if that doesn’t happen.
    I may have missed a few points but I’m glad this discussion is taking place, and hopefully autistic voices will be more actively involved in the future.

  7. Thanks for this perspective. I am neurotypical, but as a teacher, naturally my students are very diverse, and include autistic students, and I’m keen to seek out autistic perspectives wherever possible.

    My gut reaction to this is that I really hope Sesame Street doesn’t disappoint the autistic community longer term in the portrayal of Julia. They’ve given themselves a tough job: a single character to represent enormous diversity. Neurotypical people are diverse and have many aspects to their personalities, and there are plenty of characters on Sesame Street to help display that diversity and richness. Autistic people are just as diverse, with just as many aspects to their personalities, but Julia is a single character. I see that as a potentially fatal flaw for Sesame Street to overcome.

    I will watch and wait, and continue to seek out autistic perspectives. Thanks once again for providing yours.

  8. >> In one video Julia and Abby are blowing bubbles together and popping them. The bubbles float out of Julia’s reach and so Abby, without asking what Julia wants to do about it, announces that she will pop them for Julia.

    I know, I’m looking at tiny details in a kids show and I’m picking it apart. I know I’m going to be criticised for it. <<

    I don't think this is picking the show apart. I think this is the type of feedback Sesame Street should be looking for, expecting, and welcoming with open arms. My hope would be for some sort of progression in understanding on Abby's part that Julia may have her own ideas of what should be done with the bubbles (using this example). While I agree that disabled persons are not here to provide learning moments (and your example above of "makes me be a better person" makes me cringe), I think ALL human interactions and relationships can provide these moments and as such, we should frame inclusion as part of a much bigger picture, particularly when teaching our children.

    Coming from the NT parent of one exceptional, yet still NT, son.

  9. I am autistic and have autistic children. I could not agree with you more. While non autistic parents see things from their well intentioned perspective, it is quite different from having a different brain wiring oneself. This crucial difference definitely affects advocacy and vocal communication of the needs autistics have. I know most parents are trying their best, but their best should be to listen to the adults who are autistic who DO have a voice who are giving a clearer picture and yes their children will have a varied scale of needs that differ, but standards like executive functioning, sensory overload and generic issues we can speak upon SHOULD be heard from our perspectives so damaging therapies like ABA would be stopped. And yet most non autistic parents of autistic kids get mad at the articles written by autistics…its so frustrating and ironic.

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