“How we talk about autism—how we talk about autistic persons—directly impacts on how the public, how people, think about autism, and how they perceive and act towards autistic persons.” – Autism Vox
Please note that I do support fundraising campaigns for autism if their purpose is to better the life of autistic people and if they ensure that the lasting image of autism left in its participants’ minds furthers the acceptance and inclusion of autistic people in society.
Autism Western Cape (AWC) is launching a fundraising campaign next week called Jail4Bail. The executive director of AWC would lock himself in a jail cell at a local mall until a million Rand is raised.
At first I did not give it much thought as my understanding was that part of the funds would go to a local police station and that the concept of putting him in jail would be viewed as a joke and a fun event, as it has been in other situations where the Jail4Bail idea was implemented. AWC also requested me to write an article about my daily experiences as an autistic person to use in conjunction with this event, which I gladly did.
In my naivety I never realised that in their minds, there was a direct link to the idea that either autistics are viewed as imprisoned, or that the family of an autistic person live in a jail-like environment because of autism.
This horrifying realisation came to me when I saw the first attempt at a poster for the event. It features a pre-school girl in a cell with her hands clasped around the bars and a look of fear on her face, as she stares to some unknown horror somewhere above her.
I immediately sent off an email to the director of AWC which:
- pointed out that I am appalled and furious at the logo
- suggested that he becomes acquainted with the recent similar Ransom Notes debacle, and included several links to insightful articles
- requested a public apology
- demanded that the image is pulled
- suggested that he resigns from his position
- asked that my article is excluded from this appalling and nauseating campaign
I further mentioned that I will make the global network of autism activists aware of this initiative, which is what I am doing here.
I got a response which rang:
“Thank you for giving me your personal opinion. Can you please tell me exactly what you find appalling and nauseating? I have retracted your article as requested. It is great that you are willing to forward the information to the global network of autism activists to help us in a developing South Africa . I hope that the global network of autism activists would give us the necessary funding to be able to provide additional schools and other service to enable our assist thousands of children, adults and their families affected by Autism. We are going ahead with the project, because we need to create awareness about Autism and we need funding to provide additional services for individual children and adults who not as fortunate as you. “
I decided not to respond to this email as the person obviously did not bother to read the articles I suggested or proofread his email before sending it through and I realised that it would be wasteful for me to try and keep speaking to a person of such lack of awareness and ignorance.
I heard the next day that AWC did decide to pull the image but replaced it with an image of an adult person behind the bars. AWC did not bother informing me of this decision; I was made aware of it by another person in the broader community in Cape Town.
The new logo now features a dismal looking adult in a dark jail cell, staring out once again to who-knows-what. At least a child was not used but the message is still unacceptable, self-pitying and totally counter-productive to the message of inclusion and acceptance.
I am further concerned that a significant portion of the AWC funds, that is meant for the improvement of the lives of autistics, has been spent on the organising of this event, which apparently has taken a resource knock of nine months, understandably leading to AWC not being prepared to call its launch into question. I have to question the length and associated cost of planning such an event, considering that there has obviously been very little research done into whether it is appropriate. I also have to question whether the time and investment cost into a fundraising event is a reason for not considering changing its theme, if it is clarified that the image portrayed is not just inappropriate but damaging to autistics.
I am surprised by their claims that they have gotten consent and indeed positive responses both locally and internationally, not just for the event theme but also the resulting poster with the child. I can only wonder who those parties were – perhaps in numbers they were sufficient but in diversity I have to assume that only like-minded individuals were approached for commentary. I can say that certainly no autistic person was approached and I question whether any of the other autistic organisations or schools for autistic learners in the Western Cape were notified, neither were any non-autistic organisations that deal with disabilities, which would have immediately pointed out the inappropriateness of AWC’s theme and image.
I am further concerned that the mind that constructed this event will be the one that is the face to the public and who will be answering questions with regards to autism, as donations are received. I do not want this one-sided, negative view of autism that is reflected in the actions of the organisation to speak for me and other autistics, of all ages – at all. And if the AWC’s message is not sympathetic towards the autistic, then what is it? Perhaps if it is only sympathetic towards the parents that see themselves as imprisoned, it should clarify its purpose and ask for donations for therapy for parents that have difficulty accepting their children as they are, or wanting to change them into different children, if only they could get sufficient funds to put them through endless behavioural therapy.
In the end, there is huge responsibility that comes with being in the position of executive director of AWC. It does not mean playing hero or martyr, or furthering your own personal agendas: it means staying in touch with what is happening in the world of autism, being educated and aware and being inclusive, of all autism related parties in the Western Cape, including autistics and other autism related organisation, even if they disagree with you.
And asking an autistic to write an article (for free) to support your event is not inclusion. It is pretend.
One has to be so careful how autism is portrayed to society. The problems that autistics face today are often more those caused by lack of acceptance and inclusion in society than the actual disabilities. If your hope is to give autistics the freedom of society one day, how can you portray it as a jail? If you want to change a perception, don’t enforce it! This is not a difficult concept to understand. How to brand your fundraising event is far too important to leave to advertising and marketing organisations and it needs much thought and mindfulness. When in doubt, just consider the Pity: It’s 100% Curable brand. That is the type of message that I would like to see at an autism fundraising event.
I can speak much more about this but bottom line is that the campaign is wrong in that it will damage the very cause it is trying to promote. Your campaign will cause damage to my image as an autistic person - no good will come to me, personally, if society sees autism as a prison that locks either the autistic person or their parents up in a situation of desperation which only a pitiful donation can make better. That prison is your prison, not mine. Go sit in it, for weeks, but don’t make it mine. I feel ashamed and violated by the theme of this campaign.
And I am your autistic daughter or son’s future voice. Whether you like it or not.
“I hope to communicate to you that, contrary to the unfortunate paradigm that has pervaded the media discourse about us, autism is not a tragedy.
We are, as with any other minority, a community with unique needs, strengths, challenges and aspirations
that are often distinct from the parent or professional voices that speak about us, without us.
The true tragedy is the persistent discrimination, abuse and lack of access that continues to govern society’s approach to us.
On this, the first ever World Autism Day, we assert that it is this prejudice – not autism itself – that we have a true interest in combating,
in the interest of ensuring for every person the rights of communication, inclusion, self-determination and respect.” Ari Ne’eman
Looking forward to it. The previews that I’ve seen have been great.