Today is the second of the Google Flash Blogs, “Autistic People Are . . .” and so much has happened in the last week that I can barely believe it’s only been seven days.
The biggest thing this week has taught me is that Autistic people are not to be underestimated! We have moved mountains with our activism this week! And it has been so wonderful to see the whole community coming together like this.
And it has taken a whole village to raise this child. First, the call to arms was sent out on February 13th by Âû, the Autistic Union, when they posted about the terrible results that came up in Google autocomplete. Everyone was understandably upset about that and Yes, That Too stepped forward to organize a set of Flash Blogs. At the time, we were thinking maybe we could just put out enough positivity to overwhelm the negative attitudes in society that were causing Google to make such unfortunate autocompletes.
But we wanted to make sure we had covered every angle. I thought, “people always like to say that we’re dwelling on the negative, so they will probably tell us we are just complaining and not actually doing anything.” So I figured, let’s do something we can point at when people say that, so that they know we’re not just complaining, we’re … well, we’re covering every angle.
So I did some searches and found out that another demographic had taken a lawsuit against Google over autocompletes and won. Part of the settlement was that Google had to fix the search engine so the autocomplete wouldn’t provide hate speech gainst that group. I also found out what the proper channel was for registering a complaint against Google, so I wrote to inform them that we were not happy about the situation. The response from Google was sympathetic to our anger and fear but dismissive about making a change. This entire correspondence is public and you can read it here: Disturbing autocompletes for autism searches.
Well, we had taken all reasonable measures so we went forward with the “Autistic People Should . . .” Flash Blog on Saturday, February 23rd and it was a tremendous success! Scores of Autistic people wrote about our lives, our identity, what we want from ourselves, our families and friends, and society at large. No, Autistic people are not to be underestimated at all! The outpouring of love and pride was heady! I often feel so honored to be part of my community but I have rarely felt so proud of my neurology and my tribe as I did that day. It was a glorious day!
We knew we wanted to take things to a higher level, though, so we immediately began planning our press release. I had wanted to write a press release from the first day and had decided to wait until the first Flash Blog had completed so I could quote some of the blogs in the release. I have been trained in writing press releases and so I wrote the first draft and then submitted it to the community for comments and edits. People made some excellent suggestions and we discussed all of them and implemented most of them.
We were all leery of putting our personal contact information on the release but we knew that we would get a better news story if we were available for reporters to speak with. Many Autistics have a hard time with the telephone. And I want to say right now how awesome it was that our allistic allies did not try to step in and do it for us! They offered support and advice and assistance but they never infantilized us, they never tried to step in and take over or do anything for us in a way that would indicate that they thought of us as anything less than fully capable. And that is why they are our allies! They know: Autistic people are not to be underestimated!
I ended up putting down the phone number for the phone I usually keep unplugged, planning to plug it in for this event and then go back to unplugged again. I was worried because I sometimes become unvoiced — unable to speak — when I am very stressed or ill. I was afraid reporters would call and I would be unable to speak with them. But I wrote out scripts for all the things I could imagine they would ask and I programmed my AAC device with all the phrases I could think of that I might need. If I were struggling, I could read my scripts and if I were to become completely unvoiced, my AAC would be ready to engage with reporters. Even the Invasion of Normandy (the largest amphibious operation ever undertaken in the history of war) was not this well planned!
So we hammered out our press release and on February 27th, one of our allies with great connections, Beth, submitted our release to hundreds of media outlets, large and small. You can see our press release here: Autistic people protest Google.
The release went out. We waited, nervously. I plugged my phone in . . . . and it rang!!!
The most important call was from Kathleen O’Brien, a reporter for the New Jersey Star-Ledger. She was very professional but very personable as well and immediately put me at ease with her obvious concern and respect. She said that stories about autism were very important to her paper because New Jersey has one of the highest autism rates in the country. So many New Jersians are concerned about the issues of autism because of that. So when our press release crossed her desk, she took notice right away.
O’Brien called Google and got a statement from them that they were already working on fixing the issue (which may well have been true . . . Google News was one of the outlets our press release had been sent to.) Then O’Brien called me for a statement and more details about our protest. When she told me what Google had said, I rejoiced! And Kathleen O’Brien reported the events by writing: “Autism activists have succeeded in getting Google to change the results of its automated search process so that offensive “hate speech” doesn’t routinely show up as a suggested match.”
This exhilarating event did not occur in a vacuum, however. The day before O’Brien called me, a news story broke about a developmentally disabled basketball player. Many of us in the Autistic community had problems with the way the media represented this story. But when we complained about it, we were often misunderstood and huge arguments broke out in various online social areas. Even my very sensitive and socially conscious boyfriend, while feeling conflicted about the story, did not fully understand why I was so upset about it until we watched further coverage on ESPN and on local El Paso news and he saw how blatantly the young man was being edged out of his own story.
But when we activists were written out of our own movement two days later, it really hit home for my boyfriend. “I had no idea,” he said. “It’s more pervasive than I had imagined.” You see, Autism Speaks found the news story and they reported it . . . with their own spin — a spin that sent us Autistics flying out of our own picture. On their facebook page, AS wrote: “Today we tip our hat to Google! They have officially changed the automated search results for offensive ‘hate speech’ directed at people affected by autism.”
Brenda, of Mama Be Good, described so well how this made Autistic activists feel when she wrote:
“Imagine that there’s segregation in Montgomery, Alabama, and black people are assigned to the back ten rows of seating on all city buses. Imagine that black people decided to initiate a campaign against this segregation. Imagine that they were met with silence and refusal by the bus companies. Imagine after their campaign was successful that the city of Montgomery (who enforced the segregation) then made an announcement congratulating the bus company for standing up for equality. That’s how I would explain it.”
But . . . you know what?
Autistic people are not to be underestimated.
We have pushed through this far. The stress of this week (and I didn’t even mention the difficulty of yesterday being a Day of Mourning) has almost put me off blogging and activism altogether, but maybe Autistic people are not to underestimate ourselves, either.
And it’s not just activism. If you have a child who is still unvoiced despite being seven years old. Or if you have a child who is still in diapers at age eight. Or if you have a child who still bangs her head against things at age nine. And if you have people in your life — doctors, teachers, therapists, maybe even your own family — who are telling you that your child is not going to amount to anything. Here’s what I want you to do:
I want you to gather every bit of courage and determination and faith that you have and I want you to tell that person in a strong and confident voice, “Autistic people are not to be underestimated.”
I can’t tell you what sort of person your child will grow up to be. All I can tell you is that you can’t really know that from looking at the child. And I want you to always remember that “developmental delay does not mean developmental halt.” I am still developing, growing, changing and I will be 46 years old on Monday. Autistics develop on our own timetable. Never underestimate what your child is capable of now. Never underestimate what your child could become. And don’t allow anyone else to sell them short, either.
Autistic people are not to be underestimated.