Also, I would like to reiterate my thanks to my fellow campaigners, from the main organisers to those who simply joined the group/Liked the NotLockedIn Facebook page, and all those in between. Everyone played a part and every part was and continues to be valuable.
The NotLockedIn Twitter account is very busy still, with many autistics tweeting us their support, among them Alis Rowe, aka The Girl With The Curly Hair, prominent US activist Amy Sequenzia (who is currently very busy fighting the healthcare changes in the US along with many other autistic and disabled people; good luck to you all, you have our support!), The Bullsh*t Fairy and a national UK project for neurodivergent artists called Flow Observatorium. Many autistics are continuing to discuss both Locked In specifically and also broader harmful and suspect campaigns. So many autistics are telling us of occasions and examples where our voices are ignored and dismissed. We've also had plenty of support from allistics; I know a number of my NT friends have been talking about it and lending support.
The NotLockedIn campaign is far from over! We had our first major success this time last week with Tesco's withdrawal and now we are working on persuading Caudwell to heed the requests of many autistics across the world to not just suspend Locked In, but to end it permanently. One of our aims is for them to genuinely understand why Locked In is so inappropriate, inaccurate and offensive, and to help them find better, more appropriate and accurate campaigns. We would like them to have the input of a number of autistics, as we are the best experts on what should and should not be done.
Currently we are in the process of drawing up a formal mission statement clarifying our aims and objectives moving forwards with NotLockedIn, and it should be ready for release in the next couple of days. It's being led by Alexis and Sarah, but everyone in the group is able to contribute and we'll check with everyone involved that they're happy with it prior to release.
We intend to extend an invitation to John Caudwell and others to meet with us to discuss things in person, and to increase autistic input (there appears to be very little, if any, at the moment). If anything comes of that, I'll let you all know.
I last emailed Andy Bailey on July 19th and have yet to receive any form of reply, so I have just now emailed him to inquire whether he received that email. After all, emails do go astray sometimes...
I have contacted Emma Bartholomew at the Hackney Gazette, asking if the paper would consider a follow-up on the Locked In situation now that Tesco has withdrawn its support, as I think doing so would send a positive message to young autistic people and their families that autistic voices can and do get heard, and that change and improvements can be made when we speak out.
The Sutton Coldfield Observer, who I emailed last Wednesday, has yet to reply, so I sent a quick follow-up email to see if they received my original email.
The only supermarket to reply to me so far is Sainsbury's, and this is their response:
Thanks for your email to Mike Coupe, I’ve been asked to reply on his behalf. We're committed to making a positive difference to local communities and we try to support as many good causes as we can each year.
I understand this is something you feel strongly about and we appreciate you bringing this to our attention. Please be assured I’ve passed your comments on to the relevant department for review, and we’ll continue to monitor this going forward.
Thanks again for taking the time to get in touch, your feedback is important to us and we hope to see you in store again soon.
I have yet to receive any communication from Third Sector Excellence Awards. The lady I contacted is apparently away at judging for the awards and has limited email access, so I have sent a follow-up email that reads thus:
I contacted you the Sunday before last (July 16th) regarding widespread autistic concerns about the nomination of Caudwell Children for a Third Sector award. I appreciate that you have limited email access while you are at the judging event, but there are a considerable number of autistics including myself who find it highly inappropriate that Caudwell be recognised for "excellence" when there has been sustained autistic opposition to Locked In since its inception in 2015. In my previous email I explained our objections and the fact that Caudwell has claimed to listen to our voices but then dismissed them and continued with Locked In. We at the counter-campaign, NotLockedIn (we have presences on Facebook and Twitter under that name), find it very revealing that Tesco withdrew its support from Locked In before Caudwell did, following widespread communication from the autistic community, and that Caudwell's primary concern appears to be a loss of income and potential bad PR, rather than that they misrepresented a group of people they claim to support. The The suspension of Locked In even made national news in The Times last week. In addition, we are deeply uncomfortable with their focus on and funding of ABA therapy, which many autistics around the world have spoken out against as abusive, torture, autistic conversion therapy and dog-training for autistics - and these descriptions are from autistic people who have been through ABA so they are the voices that should be listened to on this subject.
We at NotLockedIn implore you to consider our concerns about and objections to Caudwell Children's attitudes about autism and towards us, and reconsider their status as a nominee in light of the current controversy, as we feel it would be highly inappropriate for them to receive awards when the people they claim to support are so clearly denouncing them as misrepresenting them.
I hope to hear from you soon.
As well as my email, one of my fellow campaigners, Alexis, yesterday wrote and sent the following to Sarah at Third Sector:
I write regarding Caudwell Children's nomination in the category Communications Campaign of the Year for their 'Locked In for Autism' fundraiser.
I understand that judging took place during the W/C 10th July.
[Autistic-on-wheels] from our group contacted you last week with our objections to Locked In being nominated for this award. You may be aware that Tesco have since dropped the campaign and Caudwell have suspended it, following a petition signed by over 1,500 people in 3 days.
I obviously do not know what the outcome of the judging process was, though I trust if Caudwell were selected for the award, that this would now be deemed inappropriate and the award withdrawn. I believe it would be in your best interests to also remove their nomination from the category.
The Locked In for Autism campaign has attracted a lot of controversy over the last 3 years, particularly from the Autistic community that it claims to represent.
Besides being highly offensive and controversial, we believe it was very ineffective in reaching it's supposed main goal - to raise awareness and acceptance of autism. It's clear to us that this campaign only had one real goal - to raise money for the charity. It did so well, though made very little effort to raise awareness, and in fact spread misinformation about autism.
People from the Autistic community approached the volunteers at the events to find out more information. I personally was told by Andy Bailey (Media Campaigns Manager) when I approached him at the Hemsworth event last year, that they were raising awareness by putting the word 'autism' out there, and hoped that people would then go home and look for more information online.
They did not have any autism information to hand, though they had a table with leaflets about Caudwell Children and a leaflet specific to the campaign. Neither of these had information about autism in. I have searched Caudwell Children's website, and while there is some information buried within the site sporadically, it is not substantial or at all easily accessible. On the Locked In page on their website, you are invited to ask for more information. After inputting your e-mail address, you receive an automated response saying that the Locked In team will get back to you within 48 hours, but no information or links to information about autism.
An example of the lack of knowledge that the volunteers have about autism can be found on their website under the heading "Newport woman to raise awareness of autism":
'"...many people, including myself, have little or no understanding of the disability."
Amanda, a former Lliswerry High School pupil, is hoping that her time in the box will give her a better appreciation of the condition. As she explained: “People have told me that it can be a lonely place when your child is diagnosed on the autistic spectrum. I’m hoping that parents of children with the condition come into the store and tell me about their experiences.
“Only by talking to them will I begin to get a better understanding of the challenges that they face each and every day.”'
It is clear from this statement, openly shared by Caudwell Children, along with many other examples we have found, that Caudwell are not offering autism training to their volunteers. How can a group of people who "have little or no understanding" of the condition, effectively raise awareness of it? How can an autism 'awareness raising campaign' be effective when:
- Volunteers involved in delivering the campaign themselves have little understanding of the condition
- No written information is made available either at the events or on the website, nor are people signposted to further information
- Members of the public are expected to approach the charity to tell THEM about the condition
- The only information about the condition that is conveyed is a highly inaccurate, damaging, stereotypical, offensive metaphor
- The campaign organisers continually ignore substantial critical feedback from the people they claim to represent
We have had a look at the entry criteria available on your website. We would be interested to hear more about your shortlisting process. With all due respect, it would appear that this needs to be reviewed, given that you have allowed such a highly inappropriate campaign to be shortlisted in the past.
If you would like any further information about our Not Locked In campaign please get in touch, or visit our page below. In the meantime we eagerly await your response.
More updates as things develop!
See what autistic hyperfocus can do?!