Yesterday lunchtime I sent the following email to Andy Bailey at Caudwell and I will be interested to see what he says. I hope he will reply by tomorrow afternoon; if not I will send a follow-up email to check whether he received yesterday's (and to provide a little prod to attend to it and also that I won't just shut up and go away (nor will any of us) if we are simply ignored).
Thank you for confirming that the Hackney and Birmingham events have been cancelled.
Regarding the phone call, I would like to reiterate what I said previously: that I have difficulties with the phone due to autism, so I would like to keep communication to email. Please do not ask me again to call you because I can't.
Yes, my position on the Locked In campaign is that it should be stopped. Permanently. As well as it being an inaccurate portrayal of autism, a number of autistic people have been shut away in cells and seclusion rooms similar to this, so the Locked In campaign can be extremely triggering and traumatising. One autistic person who used to work for Tesco was so horrified and upset by the event occurring where she worked that she had to quit her job, directly because of your campaign. Please do include my email(s) as part of your review process, and I would encourage you to use additional evidence such as the Cat In A Dog's World article I sent in the original email (particularly as that was written last November, demonstrating that Caudwell has been asked before to cease this campaign) and to look at the Twitter account @NotLockedIn, where you can see that *many* autistics find Locked In inappropriate, inaccurate and highly offensive, not just one or two. We also have the support of Amy Sequenzia and other non-UK autistics.
I am sorry that this has affected your income but surely you agree that it is far better to ensure that your campaigns are accurate and appropriate, and that the wrong campaigns are harmful, both to the organisation and to those you support? Given that generating and maximising income is, understandably, important to you and your colleagues, in the long-term, appropriate and accurate campaigns are likely to generate more income than otherwise.
I personally do not have the skills for coming up with campaign ideas as my abilities lie in other areas - I am very much a words person rather than a campaign-ideas person; the latter is not something I am good at - but I am happy to oversee and advise on the suitability of other people's ideas.
I would also like to draw to your attention that a lot of autistics are deeply concerned with some of the therapies Caudwell supports and promotes, specifically ABA. Many autistics deeply object to this programme, especially those who have been through it, describing it as abusive, torturous, autistic conversion therapy (to force autistics to behave in a neurotypical manner to please neurotypical adults) and dog-training for autistics. I can send you some links if you like, to support my point. As I said in my original email, we are not broken/defective neurotypicals and we do not want to be made to feel that way. There are better options out there. While I appreciate that this point is not directly connected to Locked In, if Caudwell genuinely wants to work with autistic adults, respect our perspectives and listen to what autistics (who are the real experts on the autistic experience) say we want and need, this sort of thing has to be considered.
Would you consider including any of us in the review or is it an internal thing?
I await your response.
The author of the article in the Hackney Gazette has been following our campaign and informed me that there will be a letter in today's issue of the paper on the subject. She invited me to write an additional letter for the paper so I did so. We shall wait and see if it is published, though it may have been a bit long!
In it I expressed relief that Locked In has been suspended and that we hope it will be permanently abandoned. I mentioned that we are concerned about Caudwell's support and promotion of ABA and explained why so many autistics are against it. I used the dog/cat analogy. I summarised why we consider Locked In to be ableist and harmful. I finished with the following:
We are prepared to have discussions with Caudwell about how to move forwards and create better, more appropriate campaigns, and also what kind of support and therapy is appropriate, and to advise them from an Autistic perspective. Listening to autistic voices is essential.
I have emailed the Sutton Coldfield Observer (there was no direct address or name of the specific article's author) with a similar structure and content to my original email to the journalist at the Hackney Gazette:
Dear Sutton Coldfield Observer,
Last week you published an article about the above campaign run by Caudwell Children. I do not know if you are aware, but since then the campaign has been suspended after a massive counter-campaign by myself and my fellow autistics at NotLockedIn, resulting in Tesco withdrawing its support from the campaign and then Caudwell suspending it pending a comprehensive review.
We set up the counter-campaign because the stunt is ableist, inaccurate and harmful. It perpetuates, out-of-date, false stereotypes about autism and does not have the support of the autistic community.
Autistics first expressed concern about this stunt last November: https://acatinadogsworld.wordpress.com/2016/11/12/how-lockedinforautism-is-hurting-actuallyautistic-people/
Despite the many objections and complaints, Caudwell chose to ignore and silence autistic voices and pushed on with the campaign regardless. Last week planned events in Hackney and Sutton Coldfield came to our attention and we (many autistics) mobilised and got organised, putting in a great deal of hard work, resulting in the withdrawal of support from Tesco and the suspension of the stunt by Caudwell. Our ultimate aim is to have Caudwell permanently abandon this stunt and to find better, more appropriate campaigns.
To demonstrate how much support we have from the autistic community for the NotLockedIn counter-campaign, you can read our Twitter feed: https://twitter.com/NotLockedIn?lang=en
You can find a more detailed explanation of my and other autistics' reasoning for our objections here at my autism blog: http://autistic-on-wheels.blogspot.co.uk/2017/07/locked-in-for-autism-ableist-stunt.html
I am happy and willing to discuss this matter with you further, especially to provide an autistic perspective (as we are the true experts on autistic life) and I look forward to hearing from you soon on this matter.
Finally, today I have sent the following email to the CEOs of Sainsbury's, Morrison's, Asda, M&S and Waitrose, and to customer service at the Co-Op:
I am emailing you on behalf of the NotLockedIn campaign. I do not know if you are aware, but the charity Caudwell Children has been running a series of stunts called "Locked In For Autism" in conjunction with Tesco since 2015. The stunt involves someone being locked in a glass box for 50 hours (being let out for toilet breaks) in a Tesco Extra shop because it is apparently meant to simulate what it is like being autistic.
The autistic community strongly objects to this symbol and representation of autism on the grounds that it is based on old stereotypes, that it is highly inaccurate and grossly unrepresentative of the reality, and that it perpetuates harmful sterotypes. Please read these perspectives on the Locked In stunt:
[Cat in a Dog's World]
[my original blog post on the subject]
(the latter is my autism blog; I am linking it here - and there are two follow-up posts on the campaign - to save me typing it all out again).
In addition, Caudwell funds, supplies, promotes and supports an autism "therapy" known as ABA, or Applied Behaviour Analysis. Supporters of ABA claim that it enables the autistic person to better function in a neurotypical (non-autistic) world, but many autistics who have been through ABA describe it as abusive, torture, compliance training, autistic conversion therapy (in the same sort of vein as "gay conversion therapy") and dog-training for autistics. "Good" (ie. following orders and displaying perfect obedience, suppressing autistic traits/behaviours and demonstrating neurotypical behaviours) behaviour is rewarded and "bad" (ie. disobeying orders and expressing autistic behaviours) behaviour is punished. The autistic community DOES NOT support ABA.
Last week we (the autistic community) became aware of these Locked In events being planned in Hackney and Sutton Coldfield. We have since been in regular contact with Tesco and Caudwell, and set up the NotLockedIn campaign, which can be found on Facebook here https://www.facebook.com/notlockedinAAC/?ref=br_rs and Twitter here https://twitter.com/NotLockedIn?lang=en
As you can see from the Twitter account and the Cat In A Dog's World article, this issue has been going on for some time, not just in the last week. Objections were raised by autistics in response to the previous events, Caudwell claimed to take on our perspectives, but then decided to continue running Locked In events despite widespread autistic objections.
On Monday, following our campaign and many of us contacting Tesco to draw their awareness to the autistic community's objections to Locked In, Tesco withdrew their support from Locked In, a massive victory for us. Caudwell later that day decided to suspend Locked In, pending a "comprehensive review". Their communications with us as a group and with myself give the impression that they are unhappy with the loss of income this suspension means and although they are telling us they want to work with us, their previous record from last November has left us wary and unconvinced about the sincerity of this.
We in the NotLockedIn campaign and the autistic community are concerned that, having lost the support of Tesco, Caudwell may turn to other supermarket chains to host Locked In. Because of this, I am reaching out to you now to make you aware of and inform you about Caudwell's attitude towards autism and the autistic community, and to warn you that they depending on the decisions reached following their review, they may attempt to recruit other supermarkets including yourself to host Locked In.
If they do contact you about hosting Locked In in the future, I and the NotLockedIn campaign team request and advise that you refuse, if you place any value in and have any respect for your autistic customers (and I expect some of your staff are autistic, so them as well).
I hope to hear from you soon.
I appreciate that there's a lot of repetition in this post, but I want people to see how the campaign is going from the emailing and communication-with-companies-and-Caudwell perspective.
At just gone 6pm, I have yet to hear from anyone that I emailed in the last couple of days, so we shall see how that goes. I know some of my fellow autistics have spoken to people on the phone about this matter, including Andy Bailey, but for things like this I don't like using the phone due to being autistic. I have a tendency to stutter and stumble over my words, I can't read people's body language (due to being unable to see them) and that makes it harder to gauge tone of voice, you are expected to respond immediately so there's too much pressure to respond without having the time to process the conversation and work out what you are going to say (which then leads to panic and increased anxiety, which causes further stuttering, and it just spirals downwards from there), and I'm not as articulate. With typing, I can carefully plan what I am going to say, I can carefully structure it so it maximises eloquence and succinctness (not sure if that's a word but if it isn't it should be), I can review it before the other person receives it and I can edit it. I can't do any of that over the phone and for things like this you need to be articulate. When I'm on the phone to friends and family I'm just about OK, but with anything else I don't do well. For this particular subject, I also want to have written records of all communication, partly because I'm rather cynical.
So in short, we are awaiting responses from Caudwell, two local papers and various supermarkets.
I'm amazed at how well we've come together, not because we're autistic, but because I've been involved in various things over the years and people aren't always the most efficient or reliable when it comes to getting things done. Maybe with this it's multiple autistics' hyperfocus coming into play!
I want to repeat how well this campaign is working (it's not over yet!) and to thank everyone who's been involved, on whatever level be it emailing, tweeting, setting things up, phoning, sharing things on Facebook, liking posts or just being in the group.
Let's keep this going!