Yesterday I participated in a virtual march on Autism Speaks. There was a rather large outpouring of tweets and Facebook posts. I thought it would be great if we had some news coverage so I looked up the news staff at WBTV and posted to all their Facebook pages, tweeted to them and sent them emails. I wrote that Autism Speaks “demonizes the very population it purports to serve. They bully us through online hate speech and divert money from charities that actually serve our community.” I followed up with a link to http://boycottautismspeaks.com where there is a great deal more detail on the issues with Autism Speaks.
One of the news anchors asked me to remove the post on their Facebook page saying it was “super inflammatory.” During the event a Twitter participant within the Autism community called for a more nuanced discussion and cited the characterization of Autism Speaks as a hate group as an example. Being called out by two people I respect made me stop and ponder whether “hate speech” and “hate group” are accurate characterizations off Autism Speaks. I’ve tried to capture those thoughts here.
Part of the problem is that the word hate is itself highly charged. We treat it in the law as a special circumstance and apply different penalties depending on the motivation for a crime. So hate, in the popular sense of the term, originates with intent and radiates outward. According to this definition, Autism Speaks cannot be a hate group, I’ve been told, because the individuals involved are motivated by compassion and not hate.
This school of thought holds that Autism Speaks may be doing all the wrong things, but if they are doing them with the best of intentions they are at worst ignorant and certainly do not rise to the level of being a hate group. They certainly do not deserve to be lumped in with the KKK, Neo-Nazis, political talk radio hosts and other more recognizable hate groups, the reasoning goes.
What I find interesting is that is that this argument originates from the perspective of an “objective” 3rd party observer. There’s an “Us” and two “Them.” Any determination of whether the action qualifies as hate is based solely on the character of the offending party and judged by the independent party. The victim’s point of view doesn’t enter into it at all.
But what happens if we consider the victim?
Act I – Hate as intent
Let’s say you are at school, the bell rings for first period, someone unlocks the door to the classroom and you bend over to pick your books up off the floor. The next thing you know you are on the ground in the fetal position trying to protect your face and vital organs from an unknown attacker who is kicking and stomping on you. Under the law, this can be either passion or hate. Passion is when something happened to enrage the attacker. If you are the victim, you generally have some control over those conditions and some hope of preventing a future occurrence. Hate is when the attacker singles you out for some intrinsic characteristic such as race, religion or disability. You cannot change these intrinsic traits and thus have no hope of preventing future occurrences except by hiding or escalating the violence. This latter case qualifies as the classic hate crime combining elements of intent, incitement, and results.
Act II – Hate as deed
Now consider the exact same attack but suppose the attacker doesn’t feel the intense dislike we normally think of as hatred. Suppose instead that the attacker simply feels so superior that any harm done to the victim is morally insignificant, the way for example that a hunter might feel bringing down a deer. The attacker in this case doesn’t hate the victim in the sense of having a strong emotion, but actually feels ambivalent. But from the perspective of the victim, the result is the same. If you are the victim, attacked for some intrinsic quality which you cannot change, you feel like prey. You live your life in fear of predators. In some ways, this is worse than the scenario where the attacker doesn’t like your race or religion because it adds humiliation to the mix knowing that the attacker thinks of you as some class of lesser human.
This scenario lacks intent as defined earlier, but includes incitement and results. Yet it is clearly hate and is more detrimental to the victim than the classic variety hate crime. To address this, many international courts have included superiority as a criterion for determining hate crimes. Acts meet the incitement and results criteria and which are based on a belief of superiority qualify as hate crimes. An example is the “Kill the Indian to save the child” system of residential boarding schools. Although seen at the time as noble and altruistic, the practice has subsequently been determined to have been institutionalized genocide. The practice continued as recently as 1980 so there are people alive today who were students and staff. If we asked them I suspect the students would agree that the schools were hate groups and the staff would disagree. To the general public Indians were “Them” and few considered the practice from the point of view of the families torn apart and trauma inflicted on children. The government knows best how to deal with Them and our responsibility stops at sending them toys at Christmas now and then.
If you listen to the autistic community today, many of us are telling you the methods and tactics of Autism Speaks appear in our eyes to be hate. There is incitement, there are results and the intent is of the institutional variety that refuses to acknowledge harm it inflicts. Autism Speaks considers their actions as noble and altruistic and dismisses as irrelevant the protests of autistics who disagree. Autism Speaks promotes to policy makers and the general public a view of autistics are “Them.” Excluding autistic people from your Us group is the means to justify ignoring our voices and treating us as if we do not exist, even while advancing an agenda claiming to help us. and Autism Speaks, the legitimate authority in the field and voice of the mainstream Autism community (they must be because look at the name, right?), knows best what to do with Them. After all, it can’t be hate if it’s in the autistic’s best interest.
That Autism Speaks is not widely considered a hate group has more to do with the prominence of their voice and legitimacy conferred by their privileged access to national and local leaders than it does with their actions or with the impact of those actions as experienced by actual autistic persons.
Act III – Hate as policy
If you are still with me, consider one final scenario. Suppose that there was widespread and open hatred in the past but that it is no longer tolerated. People of all races, religions, and ethnicities now interact peacefully. Further suppose that the legal and economic framework created during the initial period of hostility remains in force and continues to subject the minority population to physical, emotional and economic harm, despite the superficial appearance of peaceful coexistence.
In this scenario does not require personal hate, either in the sense of an intense emotion or of a feeling of superiority. The hatred has become institutionalized and the laws and common customs set the bar for what is considered morally acceptable. If you are in the privileged class, chances are you don’t notice that many things you take for granted are denied others based on their race, religion or other quality. You may neither hate the victims nor feel superior to them and yet the system confers on you significant advantages inherited from the prior social order and which at the time of their implementation were driven by hate. To the disadvantaged in this social structure, then the result is even worse than it was in the previous two scenarios, despite the lack of personal animus between individuals. In the oppressed class, you still suffer physical, emotional and economic harm. You still suffer humiliation of being treated as a lesser class of human. But now you also suffer from diminished protection under the law and little hope of justice.
Of all the types of hate, institutionalized hate is the worst because the people inflicting the damage rarely see it and believe themselves good people, even while perpetuating a system that commits violence or genocide through policy and with the force of law. Even when it is recognized for what it is, neither the victim nor the oppressor can individually do anything about it. The underlying framework must change in order to correct the root problems. Changing that framework is difficult because it requires leveling the playing field and those to whom the system confers advantage also wield political power. They don’t see themselves as morally deficient but any suggestion of eliminating the disparity is perceived as political correctness run amok. When hate becomes institutionalized we have a name for it: Privilege.
Hate as practiced by Autism Speaks
It is into this third category that Suzanne Wright and Autism Speaks fall. You can pick almost any example of her writing but the one with which I am most familiar is Autism Speaks to Washington – A Call for Action in which autism is described as a “crisis” and a “national emergency” that is turning children into overwhelming burdens to society. In her call to action Mrs. Wright writes “we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.” Framed this way, only the charity and the parents participate in the discussion because the autistic population are simply “missing.” And that’s the best it gets. From there it goes downhill. The children may be gone but the ghosts of those children remain to torment the families. Mrs. Wright writes:
These families are not living.
They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely – 24/7.
This is autism.
Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.
This is autism.
Most of the rhetoric is framed in terms of relieving the burden of families caring for autistic children. “And, what about their parents?” Mrs. Wright asks. “How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?” These points are reinforced repeatedly with the phrase “this is autism” on a single line and in bold in case you might miss it.
This is autism? No.
This is hate.
Even the services needed by autistic people are framed in terms of the stress placed on families. It’s the moms who can’t afford a doctor. It’s the moms who agonize over a waiting list. It’s the moms who need a lawyer to obtain services. It’s the moms who are “depleted. Mentally. Physically. And especially emotionally.”
This is hate.
In a nod to autistic adults, Mrs. Wright mentions that 500-thousand American children will age out of the system in the next decade and no longer be eligible for services. She asks “who cares for these children? There is no national plan to build a city for 500-thousand people.” She doesn’t mention whether there would be fences and guards around the city but she doesn’t have to. She’s carving Autistic people out of “Us” and defining a “Them.” She drives the point home by citing a cost of $2.3 million per autistic child, representing $137 billion dollars total burden that autistic people place on society. If she did build an autistic ghetto, one gets the impression it would have not only guards with guns, but also a moat and very tall walls.
This is hate.
The objections I received to characterizing Autism Speaks as a hate group were based on the staff and volunteers acting out of compassion. But like the hunter in the 3rd scenario, autistic people are so insignificant to Autism Speaks as to be excluded from the conversation at all. Mrs. Wright closes the press release by painting a tragic picture of the autistic population.
Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.
Well, no wonder autistics are unable to participate in the activities of the Autism Speaks leadership. We are practically vegetables. John Elder Robison, author, successful businessman and prominent autism advocate, recently resigned a post at Autism Speaks citing their failure to consider his advice and counsel in their operation and planning. He was the highest placed autistic individual in the organization and was never functionally part of the leadership team.
This is hate.
Autism Speaks is the premiere charity for autism in the United States and as such enjoy privileged – there’s that word again – access to Senators, Congressional representatives and other highly placed policy makes and business leaders. The views and approach of Autism Speaks are influencing policy and building an institutional framework in which people like me are missing at best, but more commonly in her writing we represent a tremendous financial drain on society and an emotional drain driving our families to the breaking point. We are creating a crisis and must be dealt with urgently. Whatever else we are, we are so inferior that our thoughts and feelings are completely immaterial. It isn’t that Autism Speaks hates autistics. It is that to Autism Speaks, autistics are a lesser class of human, incapable of participating in any meaningful way in the policy discussion about them.
This is hate.
This attitude is prevalent and creates a general climate of distrust and discrimination against autistics. When Adam Lanza took the lives of twenty children and six adults at Sandy Hook, it was a national tragedy. When he was revealed to have Asperger’s Syndrome, that tragedy was compounded as angry people took to the Internet demanding various interventions for people like me. These were not compassionate interventions but calls to lock up autistics, require extensive supervision over every aspect of our lives, sterilize us, and one post I read even suggested autistics should be killed at diagnosis. At my age and with all that I’ve been through, I’m pretty thick skinned about this stuff compared to Aspie kids in school today. Experiencing the public backlash against Asperger’s after Sandy Hook was traumatic for me. I can’t imagine the emotional damage this public reaction inflicted on Aspie kids in middle and high school who were already struggling with bullying and an unsympathetic school system.
I am a security consultant by trade. I got into this business after discovering that the network I was administering gave me complete control of inter-bank wire transfers in amounts in the neighborhood of half a billion dollars. I passed on the opportunity to redirect a few of those large transactions and instead learned how to protect them. I’m pretty trustworthy. Yet after Sandy Hook, my client at the time questioned me about my Asperger’s and my fitness to perform my job. I have written openly about my autism and make no secret of it at work. That should not be a problem if I’m judged by my character and by my actions. But the type of prejudice perpetuated by Autism Speaks combined with an association in the press between violence and autism caused me to be judged by an intrinsic characteristic that I cannot change and it jeopardized my livelihood. Many other Aspies reported similar negative experiences and for some still in school it painted giant targets on their backs.
As a child I experienced institutionalized hate in which the school administration saw my Asperger’s as the root cause of the bullying I suffered and took no action to curtail the violence until after I was hospitalized. I thought I’d left that behind when I left school. What I see when I read Suzanne Wright’s press release is the construction of a system of institutionalized hate similar to what I experienced in school but at the national policy level. There is incitement. There are results. There is no intent on the part of most individuals involved but there is superiority and privilege.
If you buy into the school of thought that requires intent and intense emotional dislike to classify something as hate, then I can certainly see why you might disagree with my characterization of Autism Speaks as a hate group. But as someone who has experienced this as a victim I can tell you that it looks like hate from here, and not just any hate but institutionalized hate which is the worst kind. It sets national policy for standards of care and treatment for autistics, guided by people who think we are monsters and lacking any input from actual autistic people. It creates a new kind of invisible privilege where well-meaning people follow the law and policy, thinking they are doing good, or at least that they are doing no harm, and unable to see the damage they inflict on the very people they purport to serve. Meanwhile, the victims suffer actual real-world damage as a result of these policies, endure the humiliation of being thought of more as pets than humans, and have little or no hope of justice because the framework of law and policy is rigged against them.
This is the agenda of Autism Speaks.
This is hate.
This is the future if Autism Speaks continues to enjoy exclusive control of the national autism discussion.
This is hate.
Please let me and others like me participate in the national discussion about Autism. The only way that you can do that is to seek out and hear our voices because Autism Speaks is intentionally and deliberately excluding us from the conversation and they currently control the discussion. We are not hard to find. We are capable. We are articulate. We are humans just like you. That some of us are unable to participate is no reason to exclude all of us. Quite the opposite. Those of us who cannot participate are best understood by others on the spectrum whose insight should carry heavy weight in the discussion.
Autism Speaks diverts money and precious attention of well meaning people like you from groups that really help our community. Will you stop listening to them long enough to hear the voices of actual autistic people? Will you consider giving some of your money and time instead to alternative autism organizations such as the Autism Self Advocacy Network or Autism Women’s Network? Yes? Thank you!
This is compassion.
Some notes about Autism Speaks:
- Despite all their talk about helping families in need, Autism Speaks reported only 4% of expenditures in 2012 went to family services.
- Autism Speaks is strongly and consistently criticized by prominent advocates in the community they purport to serve.
- Autism Speaks continues to support and endorse the Judge Rotenberg Educational Center whose “treatment” for autism qualifies as torture under the United Nations definition.
- Autism Speaks systematically excludes autistics from meaningful participation in their group and by consequence in the discussion with state and local policy makers.
- Autism Speaks has fired advisers who disagreed with their (discredited) position that vaccinations cause autism.
- Autism Speaks relies on rhetoric of pity and fear, characterizing autistics as tragic burdens on families and on society, painting an Us and Them scenario where They (autistics) represent a clear and present danger to the emotional and financial health of families and the financial stability of the country.
Read more, with linked sources, at the “Why Boycott” page on Boycott Autism Speaks.