Locked In For Autism update

WOW. What a hectic few days.

On Thursday/Friday I emailed several appropriate MPs about the Locked In campaign, a man at Tesco who appears to be fairly high up, Andy Bailey (the man quoted in the Hackney Gazette article in my previous post) and a woman at Third Sector Excellence Awards because Caudwell has been nominated for (an) award(s).

I have not yet heard back from the MPs I emailed (Diane Abbott as her constituency is Hackney; Penny Mordaunt as she's Minister of State of Disabled People; and Marie Rimmer as she is the Shadow Minister for Disabled People). Andy Bailey replied on Thursday saying he was out of the office until Monday (today) and to call him on the number provided; I'm not great on the phone and so I replied explaining that I have difficulties on the phone because I am autistic so could we please keep the correspondence to email. I have yet to receive a reply. If I haven't heard anything by lunchtime tomorrow I'm going to email again. I also have not heard back from the Third Secot woman; I did get an automated reply saying that she was away at the awards judging and so had limited access to email and that if it was urgent, to contact someone else in the organisation (this other person's email was provided). I emailed the alternative, because if the judging is currently occurring, this is an urgent matter due to the involvement of Caudwell. Again, I have yet to hear anything back.

I received the following email from Tesco customer service on Friday:

Thank you for taking the time to email Dave Lewis, our Chief Executive.

I’ve asked one of the team to look into this in more detail for you. Due to unexpected contact volumes we are taking a little longer to respond than we would have hoped however, one of the team will be in touch as soon as they can.

Thank you for your patience until then.

Tesco Chief Executive’s Office

By "unexpected contact volumes" I suspect they mean "many, many emails from autistic people flooding in since yesterday"! I know I'm far from the only one who emailed them.

I did not expect to hear anything for at least a few days. After all, it's a big company and they had a lot of anti-Locked In emails to trawl through.

This afternoon at 4:22pm I received the following email from Tesco:

I nearly fainted! I had to re-read it several times before it sank in. This is MASSIVE. It's a real victory. It shows that Tesco is listening to autistic voices and that we can make a difference. This is real people power - the autistic community has come together and clearly demonstrated that we matter, that we can instigate change, that we can get better, more appropriate representation, that we can get organisations to listen to and respect us, that we can be viewed as equals.

I'm amazed and exhilarated at such a swift response and decision. I suspect that some of the reasoning behind that is that a lot of people have contacted Tesco, particularly via Twitter on the @NotLockedIn account, to express their displeasure at and disagreement with their support of Locked In and to inform Tesco that as long as they continued to support Locked In, they would not be shopping at Tesco, and nor would their friends and family. The threat of losing customers and money is a pretty big incentive, especially on this scale! I hope that it is also because Tesco has actually listened to autistic voices and realised that Locked In is a harmful campaign. The email from them seems positive and I have replied, informing them that I am happy to work with them in ensuring they support appropriate autism organisations and causes in the future. I also asked for clarification as it is unclear whether the Hackney and Birmingham events will still go ahead.

So this evening we are celebrating this victory. It was well-fought and well-organised and I want to thank everyone who lent support, be it emailing, tweeting, sharing things on Facebook, signing the petition to Tesco, or anything else. You have been fantastic.

However, this was one battle, and it was the relatively easy one. Surprisingly easy, if I'm honest! Now we take the fight to Caudwell itself. It may be easier than we feared, though, as following Tesco's withdrawal of support they have suspended Locked In. Though it's suspended rather than terminated, so it's not as good as it could be, although it's better than we hoped at this stage (the NotLockedIn campaign has been going less than a week). The ultimate goal is to completely terminate this stunt, as well as any other stunts that are similar, either in method or theory, because they are harmful to autistics. Thanks to my fellow campaigner Sarah-Jayne for the screen grabs!

I'm going to analyse and critique this response:

• They apologise for distress caused, which is appreciated (if they are genuinely apologetic) but if not it is patronising and condescending; I really want it to be the former rather than the latter, but given their history my gut says the latter.
• They exclusively use person-first language, despite the autistic community voicing our objections to it and explaining why we reject that and use identity-first language.
• I and many others do not see how this stunt gets people discussing autism in a "positive and constructive way" and many of us have repeatedly told them (and explained why) that it does precisely the opposite, because it perpetuates old, inaccurate stereotypes - it Others us, turns us into a freak show, it dehumanises us.
• It is very telling that the "widespread" support that Locked In has received has been from the media and local communities, neither or which are likely as a whole to understand the autistic experience, and NOT autistics, who are conspicuous by our absence; it is neurotypical superiority and their presumed incompetence of us continues, as demonstrated by some of their responses to the suspension of Locked In, such as complaining because they apparently know autism because they're affected by it (though they aren't autistic themselves), as if we don't know autism! They think that because they are Autism Parents, they know autism, and they don't want to hear autistics telling them they're wrong and fail to understand why we find Locked In offensive and inaccurate. No; the real autism experts are the autistics! It comes down to ableist NT privilege, with NTs presuming our inferiority and incompetence. There would be outrage if a charity for women was founded and run solely by men, and then they did a stunt claiming to demonstrate what life is like for a woman, and then when women objected because it was inaccurate and false portrayals, they shut us up and silenced us; this is no different. They wouldn't do it to other marginalised groups, yet they think it's acceptable to do it to autistics, because society as a whole still presumes our incompetence and inferiority. THAT IS NOT ACCEPTABLE.
• I am pleased that they have taken note of the recent reaction; however, there is plenty of evidence demonstrating that this is not just a recent occurrence so it seems they are choosing to ignore that and are only focusing on what is current and widespread.
• Suspending the campaign is an excellent decision, and hopefully that includes the planned events in Hackney and Birmingham (the wording suggests that, as does the email I received earlier from Tesco, but I'm not entirely sure); however, it has not yet been abolished completely. I hope, with the NotLockedIn campaign continuing and pressure on Caudwell growing, the "comprehensive review" will come to the conclusion that they have to abandon Locked In. I would be interested in finding out what exactly the review entails and who is able to participate in it (it's probably an internal thing).
• If they do decide to abandon Locked In completely, my suspicion is that they would be doing it because of the negative publicity it's received recently rather than because they have actually listened to autistic voices, taken on board what we've said and realised that it is a harmful campaign. That said, if they do decide to abandon it completely, for whatever reason, I will accept that as a huge victory. However, whatever the outcome, I will be watching them extremely closely, keeping an eye on everything else they do, and I will not hesitate to speak out if they start some new inaccurate and offensive campaign.

Going back to the point about "recent reaction", I wish now to draw your attention to this, from November 2016:

 My issues:

• The stunt is based on an autism parent's opinion about autism, NOT an actual autistic. That immediately reduces and probably completely eliminates any validity and authenticity that this stunt has. Considering that Caudwell is supposed to work with autistics, is it really that difficult for them to make the effort to ask one of us?
• Regarding the autistics they allegedly consulted and the one who actually participated in Locked In, I would be very  interested in knowing what information about autism and the autistic (not autism; autistic) community these autistic adults had. Honestly?? I suspect there's a lot of internalised ableism and that these people have not had access, for whatever reason, to all the information out there. If they only have information from Autism Parents and specific organisations (particularly, say, Caudwell), they are not able to make a genuinely informed decision. Like so many autistics, once I found the autistic community, I recognised the ableism, the internalised ableism and the good and bad organisations.
• They claim that they "will endeavour to address the concerns of those who provided feedback", yet I have read a lot of that feedback provided through the Cat In A Dog's World post and Caudwell clearly has utterly failed to address any of those concerns - in short, they have ignored us.
• The last point makes it clear that this is about raising money, and awareness/understanding/acceptance is a distant second, despite them saying that this campaign is supposed to be about raising awareness.

The November 2016 post clearly demonstrates that Caudwell's words were empty then. They are going to have to do a LOT to show that things are different, and at this moment I have no reason to believe that their latest placatory attempt will be any different.

[22:45 edit: It's very interesting and revealing to note that Caudwell only suspended Locked In after Tesco pulled out.]

NotLockedIn is continuing. We have won the initial part with Tesco, but now we move on to Caudwell itself. Watch this space and please continue helping the campaign!