Dear Google, Do No Harm
Dear Google:
I am very concerned about something you are getting yourself into.
I am very concerned about the rights of my people if you actually do what you intend to do.
I think you influence a lot of what goes on in the web-based information sharing and I am afraid you will hurt a lot of us, and I want to believe that this is not your intention.
Image description: Decorative graphic with pink background. Text reads: ” Don’t just imagine a better world for Autistic people. Create it.” (photo via facebook.com/boycottautismspeaksnow)
You have already proven that you are capable of listening when you made some changes in your algorithm, so that searches of “Autistic people are” would not auto-complete with words like “tragedies” and “retarded”; you did the same for the search “Autistic people should”, and the autocomplete no longer shows the word “die” as the first option.
I thanked you then and I thank you again.
You helped erase some of the negativity about my neurology.
But it is time for me to educate you again because you are partnering with the wrong crowd. You will do much harm.
I am talking about the project Aut10K. The project that can finally make Autism Speaks gloat about how they can finally help the world get rid of autism, and of Autistic people. Do you think I want to not exist?
Before you feel tempted to use the silencing tool your partner Autism Speaks likes to use when confronted by us, saying that we are only a few loud individuals who don’t know what autism “really” is, or using outdated and inaccurate terms like “low-functioning” and “high-functioning”, or saying that their children are suffering (and using examples like seizures and GI problems that are not autism) let me tell you this:
I am what Autism Speaks calls severe and “low-functioning”. I could not always make myself understood, I used to scream and cry a lot, and I am, to this day, very disabled. I cannot be left alone, I cannot eat by myself most of the time, I cannot take care of myself, I need 24-hour assistance. I am non-speaking.
I have written about my life, a lot. You can Google me (or should I say you can “you” me?)
So, about the project:
It is potentially unethical and commercializes very private information.
With all the debate about the government watching us, with all the debate about how much private information companies should be able to collect and store, with all the debate surrounding the adds we receive online (and you are very careful about that, aren’t you?), and about our privacyn being violated, why do you think collecting genetic information about only one group of people, a minority, is ok?
I, and some of my friends have reached out to you explaining why we are concerned about that, but you openly and blatantly ignored us.
See how we have reasons to believe you will harm us deeply? You are already employing Autism Speaks’ tactics and pretending we don’t matter and that the world would be better off without us.
I want you to learn that autism is not a disease. We have a different neurology and yes, we are disabled, even if many of our disabilities is a social construct, a lack of acceptance and accommodations.
This should not be an excuse to use our genetic information for the profit of others.
I noticed that there are no plans whatsoever to use profits for better services.
We don’t need pharmaceutical predators, and we don’t need eugenicist researchers trying to rid the world of us.
We are who we are and we have rights.
Would you get involved in a project called Black10K?
Would you commercialize genetic information about black people to make sure the right combination of genes, or that some genes should be excluded from the gene pool, or that medications should be develop to “correct” the “wrong” genes, all this with the objective of making the world more white?
This example is not absurd. Think about it. Why do you recognize racial diversity and not neurological diversity?
Autism Speaks hates us. I have regularly reached out to them and never got a response. They claim I am not really Autistic when I write, and too “damaged” and “severe” when they see me.
In any case, the organization makes clear that its main goal is eugenics.
Do you remember who else wanted the world without disabled people? Or without anyone who did not conform with their ideas, or did not look like them?
You don’t even need to Google that.
Dear Google, your partner believes that “Autistic people are” – tragedies; that “Autistic people should” – not exist.
You fought with us once. You should give up this harmful project and fight with us again.
At the very least, you should consult with us and address our concerns. We already stated them (and we are about to do even more). It is all in the web.
Google, it looks like you have a lot of googling to do.
About the Author, Amy Sequenzia.
So much this. There really should be a University of Amy Sequenzia.
I stand by you and your rights as an individual. AllI can say is “YOU GO GIRL”. I love the way you write, you are an inspiration.
I can’t believe this! I have Asperger’s Syndrome, and I was severely autistic when I was first diagnosed at 18 months, and I trusted these people. This is too much!
[…] Autism Women’s Advocacy: Dear Google, Do No Harm. […]
Our thoughts, support and prayers go to you to help with this challenge. I support anything to silence Autism Speaks. My son, 20 with ASD, is not a tragedy, failure or burden, he is alive, well and struggling through college, social and everything else kids his age are struggling with. When asked if we would like to change him if we could, I said “no” that would be the tragedy, that would be losing our son.
Also, do a google search for “autistics are”, “autistics should”, or “autistics “. This is what I found: pic.twitter.com/k6AVikErne
I have discussed this issue with my daughter, who is on the spectrum. She and I agree that we do wish she was NOT on the spectrum, because it has made her life extremely difficult, and painful. Just because evil people hold the same opinion as us – just because Hitler was an evil eugenicist – does not mean that I am the same as Hitler because I wish autism did not affect my daughter the way it does. This is illogical. She has said that while she can see certain aspects of her personality that are connected to her spectrum disorder, and she would not like to lose those, she wishes she could connect better with others, and that she was less disabled.
And that’s the thing, isn’t it? It’s a DIS ability, not an additional ability. That prefix DIS says it all. Those folks who are severely affected by it need the help of others, always, and will not be able to live independently. No matter the sugar coating, that’s a problem. It’s not something you wish upon someone. You do not get pregnant and say, Oh, I hope my child has autism! Until that time arrives, this cultural construct of autism is disingenuous. It simply does not work, . IF you need to depend on others to function in the world, to get one’s basic needs met (food, shelter, water, etc), then you have a DISability, and yes, we do in fact need to try to make the world a friendlier place for those folks who suffer from this. And we need to try to lessen the occurrence of this disability to the best of our ability.
It’s a hard world for the average individual. Let’s not make it harder with pretense.
Great post Amy S!
In reply to Amy Lesemann:
I am on the spectrum and can relate to the idea of some autistic people wishing that they were not on the spectrum. I think that it is a personal feeling and is perfectly valid. Every person on the spectrum is different and has their own experience of how being autistic affects their lives. I do not think that everyone on the spectrum is disabled, and I think that the amount of disability varies for each person. Many people find their autistic traits to be a benefit and would not want to lose them.
I feel similarly to your daughter sometimes. On some days, I wish I was not autistic. I get sad and angry and frustrated and wish that my life could be easier in so many ways, especially in relation to connecting with other people and dealing with (or not dealing with) sensory overload. Other times, I am thankful for some of the positive things, like hyperfocus. It can be a hindrance at times, but for the most part, it is a skill that makes me especially good at my job and allows me to learn and understand certain things in a deep and meaningful way.
People with disabilities may need the assistance of other people, but that does not mean that their lives are inherently bad or that their quality of life is lower than it is for non-disabled people. Our society is not always accommodating to people who have different physical or mental abilities. That is something that can be changed. Saying that “we need to try to lessen the occurrence of this disability to the best of our ability” is synonymous with saying that “we need to eliminate autistic people”. If you can explain how that is not the case, I would really like to hear that explanation.
Autism is not just a list of disabling symptoms. People on the spectrum are complete individuals with strengths and weaknesses just like everyone else. Our brains work differently, and in many cases, that is a good thing. Eliminating autism is not an acceptable option.
I think both Amy Lesemann & Lori wrote rational, compassionate and well thought out posts. Autism is indeed a disability. Those affected by ASD (including myself) will need supports. To the degree, that depends on the individual. I do wish I wasn’t on the spectrum. I have made gains for my auditory sensitivity, but have a painful time relating to people. I also have a love of photography and ability to write concisely?Would I have these talents if I wasn’t autistic? I don’t know. I am not sure I would want to find out. Nobody is “bad” for being born with any disability. What is the shame is lack of adequate support and understanding in the communities in which we live. I think early intervention is such a blessing for the younger generations (I am 34). I am glad that many will lead improved lives as a result. Technology is a great help, even if you struggle with is as I do. Thank you both again for your RATIONAL and valid comments.
Amy Lesemann:
I appreciate you sharing your concerns. As an adult woman on the autistic spectrum, it makes me terribly sad when I hear about younger people struggling with their identity. My heart goes out to what your daughter is struggling with right now.
I remember a time when I didn’t accept myself. It wasn’t until I found a community of Autistic people online that I began to recognize the importance of (self) acceptance and what that actually looks like and means for me personally.
Accepting my Autistic identity doesn’t mean that I don’t accept support for the challenges I face, but rather I accept myself unconditionally (challenges, gifts like those that Lori mentioned in her comment, etc.) – in order to get there it was necessary for me to learn how to navigate the world which is not set up to embrace differences and disability.
I consider myself disabled by the world’s lack of supports and acceptance. Please let your daughter know that many Autistic adults have struggled with our own acceptance and that we made it through the other side. It is possible to be accepting and okay with who you are as a disabled person. I hope you get a chance to read more of Amy Sequenzia’s articles. She has written a lot about her journey through self-hate to ultimate acceptance.
Lori, I appreciate your comment. You explained so well a view that is often hard for many of us to discuss.
Hi Amy
I respect you daughters right ‘s wish for her life whatever she wants.
The real problem is that those organizations say that we must feel that way, that our lives are not worth living as Autistics. When we speak up against this rhetoric, we are “high-functioning”. But if we are “low-functioning”, we cannot speak up for ourselves.
I wrote the article and I am what you describe as “severe”. Yes, I can type, today. it wasn’t always like this. I cannot live the independent life that people insist is the only valid one, I cannot take care of myself, I sometimes need help eating. I live with friends and I make my choices.
I could be, if you take away the genius part, Stephen Hawking. But I have an Autism diagnosis, so I must be damaged and broken, according to Autism Speaks. I don’t stand a chance to prove myself or speak for myself because, if they see me, I am too broken to have a thought and if they read what I write, I am not really Autistic.
I don’t understand your statement about disability and pretense because I never claimed that I am pretending that I am not disabled. I actually say I am disabled, very disabled. This does not mean I don’t have rights and it does not mean I cannot have dreams, or that I will not complain about how the world wants to get rid of me.
Using Autism as the boogie man does not help us, not even the ones who do not want to be Autistic. And doing so while silencing and ignoring us, as if we don’t count as human beings is even worse.
You can’t lessen the occurrence of a developmental disability unless you avoid births of disabled people. And the idea that the world is better without me, very disabled, still human, offends me.
Can you turn this into a petition so we can all stand with you? Your words are perfect!
Google still has “autistic people are mistakes” as an auto-fill option. I don’t want to think of myself, or any other human being, that way.
‘Autism Speaks hates us. I have regularly reached out to them and never got a response. They claim I am not really Autistic when I write, and too “damaged” and “severe” when they see me.” I am confused here as you said you never got a response from AS, but say they claim you aren’t really autistic. Could you please clarify this for me?
I understand what you mean by people thinking you couldn’t possibly be autistic as you are obviously well educated and your writing reflects this. I have received much disbelief-and I am verbal. I am told how “normal” I look and even speak. Apathy has been the result of the same people when I endure sensory overload and have a subsequent meltdown, as I must be too smart to act out in a manner similar to a toddler. I’ve had this reaction many times from “professionals” in the health-care field.
Thank you for calling my attention to this. I did not realize Google was responsible for false leads to searches relating to autism.
I meant a general “me”, people who are a lot like me.
When I write something and A$ supporters read, they put me in their “hf” box. Then I explain who I am, how disabled I am, and they ignore me, going back to assigning deficits and listing deficits that bothers them.
They don’t recognize any of us, people who need more than a little help
Thank you for clarifying. I agree.
just went to google, and typed in ‘autistics’ and ‘autistics should’ to see what google suggested with their autocomplete. I got autistics are stupid, not human, are dangerous, are retarded, autistics should die, be killed, be euthanized. looks like we still have plenty of work to do.
I think something that would help is for people to report ignorant/hateful comments on blog posts, You Tube videos and social media. Getting moderators to remove that garbage might help. I am not a computer whiz, but i think this idea might help things along.
I have this personal theory, that humanity is a system which required multiple skills to flourish, each enabling the fullifllment of specifc tasks which in whole led us to where we are now (wether where we are now is good or bad is another debate, let’s just assume that we want to preserve what we have).
The skills are induced by a mix of genetics, accident and education, They are not equally distributed among the people. But they were all needed and still are, if we want to keep going.
The fact that a being is not able to generate efficiently food and shelter, socialize with his pairs nor raise children doesn’t mean that he brings nothing to the community. It just means that he doesn’t fullfill these precise tasks.
Now, generating food and shelter, socializating with pairs, raising children, is it all there is to humanity ? Are these human specific needs ? I don’t think so. These are animals basic survival needs. These tasks need to be fullfilled by the very large majority for humanity to survive, but they are not enough to make us human, and we tend to forget that.
I think that the ones who can develop the other skills which make humanity what it is, these ones can mainly be found inside the pool of people who are poorly skilled in the aforementioned areas. It makes them want to transcend things, look somewhere else for their own (self) recognition and thus happiness. The pain and hope gives them huge strength and tenacity. If they have the ability (here again, because of innate/ acquired specificities) to develop certain traits like cognition, psycho-motricity, sensibility, sensitivity, and if it happens to make their own lives better, then they will go further and further on this path and build things that others find incredible, and these others will be subtly but deeply affected in the end. I’m talking mostly about science, arts, philosohpy…
Do you think science, arts, philosophy are important to humanity? Have you often heard of science advances and heart moving art realisations made by people who were efficient in food and shelter providing, children caring and socializing ? I think that even the lesser advances and artworks come from some kind of impairment, which creates a need to compensate.
Even when the people cannot find a way to compensate, they still generate things inside the people around them. When you spend time around highly physically handicapped people for instance, you can witness and feel the strong, raw and thrilling human emotions. Intense joy, frustration, anger, trust, love. You develop empathy and consideration. You can feel a sense of purpose that you are far less likely to feel when you work in a commercial company, in administration, industry… In general, the emotions between someone who is being cared of and his caregiver are extremely precious, and fullfilling for both. But we fail to see that these days and it’s considered as a time consuming burden.
I could also mention the psychopaths, even these people can provide unity, cohesion, wether under them (when they become extremely efficient political, religious or business leaders, with overdimensioned self-esteem, devought of empathy, rationnal and focused on result -> that makes tremendous collective achievments possible, such as unifying a Nation, waging war over a continent, building a Cathedral) or against them (when they become feared criminals and people search the reassurance of the mass, understand each other’s fear and pain and find a common goal in catching and punishing the bad one). Their appearances in human race made us what we are. Without them we might still be extremely scattered in small primitive communities or have simply lost against other forces of Nature…
Even if it’s not related to food – shelter – children raising – team productivity – bringing fun in a party, things are being delivered to the community in the end by the impaired and people should acknowledge it. It is a balanced system and removing parts of it means breaking the balance and risking far worse, if not the collapsing of the whole system (just like letting the bees disappear in Europe would make it almost impossible for most of local cultivated vegetals to reproduce). I fear that erasing the impaired ones would threaten our humanity, and erasing autism would specifically threaten the science and art induced part of humanity, since many autists seem capable of compensating in developing much higher than average skills in these areas, and many scientist and artist figures in history are suspected to have been affected by autism.
Of course, I realize that if the balance between the food and shelter needed and the food and shelter provided is not kept, it can’t work.
But I think the crisis in our society does not lie within the impaired.
For instance, I read recently that physically partially impaired people, employed in a compatible environment, often had a 20 to 40% increased productivity compared to the non impared and were also more loyal and reliable. Because they need to compensate, and when the compensation works they can reach happiness. They can be as happy as anyone, even happier and wiser because they have some perspective brought by their impairment’s specific pain.
As for the mentally impaired, I read many times how families of Dawn syndrom affected people considered it as much as a blessing as a curse. Mostly a curse in front of others and a blessing inside the family circle. They’re told to have a different, pure, refreshing and moving way to envision the world, they have a lot of joy and love to share with who is opened to it, and a carer / cared fulfilling bound can be formed for life. They too can be as happy as anyone. They can do simple but useful tasks for the community.
I think that everyone can bring something precious to the others and be happy, provided everyone wants it and acts accordingly.
I think our problem is that our education pushes us towards the wrong goals, which consume our time and energy for hardly a fullfillment of our basic needs and no real happiness in result, and we feel frustrated and sad, finding a much needed hope and outlet in false but widely approved solutions like charging unknown minorities.
Wow I felt very inspired by the subject. If someone read all this, thank you 🙂
Brilliant Célès!
Can you post this on Fb or something, so it can be shared, I would really appreciate it on my page.
If you are on Facebook, that is.’
My page is called ‘The Tao of Autism.
Whatever you decide to share or not, thank you. 🙂
Joanna Deacon
Good points about the Aut10K project. Violations of privacy, profiting from people’s lack of privacy, and very little, if any, profits going to better services for autistic people. But what’s more that another infamous man wanted a world rid of disabled people. I know people with other disabilities, such as Down syndrome, who are very disabled in the way you described and I can hardly imagine Google wanting to eliminate them. Autistics face so much prejudice that the perpetrator’s don’t realize they’re doing it, and that is why people buy Autism Speaks. But as you said, Google has been accommodating to us before, and I think they will again. The question is, when?
I love this, and it resonates so much with the feelings of so many of us.
However, I read an article too about how awful the ‘puzzle piece’ icon for Autism is so damaging. Yet, as so often occurs in our writings in the web, no solution is addressed. Can we not simply create a new icon or symbol. Do it ourselves. Power must express from within; it cannot be bestowed.
So, it is one thing to source the problems, but what about the solutions? Should we continue to answer the questions of the misinformed, the hostile, the belligerent, the fearful, or should we start to ask our own questions and focus on promoting our solutions together?
I am concerned we dig ourselves in deeper by fearing the eugenicist agenda. We give it validation, we feed it our anxiety.
It is a ‘reactive’ state of mind we have, in which we obsess about other people’s obsessions rather than delivering our own successfully into the world.
The moment we reach out with love to those that hate us, or fear us, by sheer ignorance, the more we harvest energy from them, and can transform it in the alchemic sense into something the world will respond to willingly.
I believe we must be warriors, but to bring it all back home, we must be gentle, or we will burn our own house down to spite the enemy.
<3 JD
I agree. There is too much fear-mongering and not enough questions such as, “What can we on the spectrum do to be compassionate and effective advocates for one another. For too long, the autism community has been a war zone. It is also too NT. There is too much exclusion I have experienced along the NT lines of “if you disagree with us, you can leave”. This has been my experience with Autism Speaks and Wrong Planet. We should know better, being marginalized and isolated from NT society, we should learn from them. “A house divided against itself cannot stand”. We have a tremendous need for autistic adults to obtain services they are not getting enough of or any at all. All the bickering will lead to attention going to the bickering rather than better services such as supportive housing and employment. If you’re from the U.S. or follow our politics, we have a tremendous opportunity to learn from hat results from turning your back on those you don’t agree with. Simply shut things down. Crippling the economy for over 2 weeks isn’t the answer. I really hope when I take my last breath that I will die knowing I was a part of something positive to better life for some or all of those who I share the spectrum with.
Being a Christian, I keep prayer my 1st priority. As it stands today, I cannot fully advocate for myself. Blessedly, my sister takes care of that. She does represent me in a way that expresses my needs, not her opinion of them. I am fortunate, but I want to help others who aren’t as fortunate. Whenever I pose the big question, “What can I do” on social media (Google+), all I get are +1’s and re-shares. This leads me to think others don’t want to get involved, including parents of autistic kids and autistic individuals. There is already a white-light spectrum colored infinity sign for those who are against the puzzle. Instead of fighting over that, why can’t we put aside our differences to address tough topics like what will life be like for the autistic adult once parents are gone and there might not be any advocacy. My late mother was very concerned about this and didn’t have peace over it on her deathbed. Fortunately, she was revealed of this fear by slipping into a coma. That said, what can everyone involved in the autism community AGREE on to better the lives of autistic individuals? No one person can do everything that needs to be done. “More can be achieved through partnership than by individual efforts.” -Linda Walder Fiddle.
[…] assistance. Amy also happens to be an accomplished writer and advocate who speaks out against the marginalization of autistics. From her website: “Once said to be less than human, I found my voice and I now make sure I am […]
I’ve always felt a bit critically on one’s standard to be truthful on intentions and management skills but Autism Speaks just reminds how screwed the world really is. I am autistic myself and have been that way all my life and it confuses me on how “Hey! If you give us one dollar we’ll give you 0.04$ and throw in a hefty 0.44$ to find out how just to get rid of you and your filth!”
Seriously!?! If Autism Speaks title was accurate it would be ‘Hypocrites Speak for Money’ I hate how people say we’re listening if they aren’t even paying attention! The Autistic, or so as we’ve currently been dubbed, are not speaking because Organizations bias their information by claiming it is a social disability to give themselves the right to speak for how they plan to rid the world of us. True, Autism can socially disable in SOME cases but you can’t stereotype us like we’re too stupid to understand what you’re really saying. I also have a brother with autism and today, at his birthday, no one even came again! They don’t come to my parties either! And this is because of our lack of friends to truly depend on and trust!
Can’t they just give us our rights and stop!?!
Amy, have you read 1984? the final scene, (SPOILERS AHEAD) when Winston and Julia are separated, made me think about ABA. I, as a bi autistic, would hate to be separated from my S.O. and put into torture… I really love my life as an autistic, but, you know, after ABA… I will never even donate blood!! I mean, ABA is the reason for me waking up every morning, just to take an antidepressant that tastes like puke.
Autism $peaks is like Big Brother… They’re watching us, and want to silence us. But i’m willing to be a thoughtcriminal.