#KiehlsxAutismSpeaks: Buying Face Cream won’t Help Autistic People & Neither will Autism Speaks

 

Matthew McConaughey

Image Description: A screenshot of Kiehl’s Autism speaks campaign video. Actor Matthew McConaughey is on the right. While text reading “with every share Kiehl’s is going to donate $1 to its Autism Speaks campaign   * up to $200,000 benefiting Autism Speaks”

 

There is so much wrong with the #KiehlsxAutismSpeaks campaign that I hardly know where to begin. The campaign has two components, the first is a consumer component which donates a portion of sales to Autism Speaks. The second is a social media campaign which raises money based on the number of shares a video featuring Matthew McConaughey gets on Twitter and Instagram.

 

There are issues with the messaging of the ad. There are issues with the methodology of the campaign self.  There are issues with the fact that the campaign is linked to Autism Speaks which is a very controversial organization within the autistic community.

The ad itself falls into the trap of so many public charity fundraisers for disability. It utilizes problematic language by defaulting to person first language when autistic people tend to prefer identity first language. There is also the focus on autistic children. This is an issue for a couple of reasons one of which ties into the complex connection to Autism Speaks. The other is simply the fact that so many of these campaigns focus on disabled children and tend to forget that those children grow up. This creates a real and serious service gap which tends to leave disabled adults without resources.

The connection with Autism Speaks makes it worse because as a result of their history of minimizing not only the experiences of but even the reality of autistic women, there is a real trend of late diagnosis or non-diagnosis. This means there are countless autistic women who did not have the benefit of services as children and who have to learn to navigate an autism diagnosis as adults with little or no support.

Autism Speaks did this as a result of the historical and inaccurate belief that autism is more common in boys. They created an entire campaign around this misconception. One of their best-known campaigns is likely the Light It Up Blue campaign which was designed specifically to recognize that false reality. Blue was meant to recognize that boys were more likely to be autistic. Despite new and continued research showing that women are systemically underdiagnosed with autism, the campaign continues. Also, focusing on autistic children alone ignores the generations of women who were not diagnosed because autism was not considered to be an option.

Charities, in general, have a tendency to focus on children because they are perceived to be more palatable than their adult counterparts. This has long term consequences in major gaps in access to services and resources by disabled adults. It also leaves a cultural gap where disabled adults simply don’t appear and are thus not expected to actually show up in society.

So charitable giving is often fraught with problematic messaging in general. Autism Speaks however, is more problematic than most. This is because it is both one of the largest “autism advocacy” organizations and it is also deeply unpopular with autistic people to the point that some have labelled it a hate group. The Caffeinated Autistic has a pretty good run down of many of the serious concerns that autistic people have regarding Autism Speaks.

Some of the primary concerns include the generally low percentage of funds (only 3%) that actually get spent annually on actual services for autistic people and their families. So, the Kiehl’s video campaign if it reaches the maximum 200,000 shares will only really amount to $6,000 going to actually helping autistic people. 63% of Autism Speaks’ budget is spent on fundraising and raising awareness.

The kind of awareness that Autism Speaks has raised in the past is deeply troubling. They released a video which I really demonized autistic people and suggested that they invariably ruined the lives of their families. The video tries to make the distinction between autistic people and autism but in reality, autism is not something that is or can be separated from the person.

 

*video transcript at the end of this post

They also produced a documentary called Autism Every Day (link is not to the video but there is a link to the video in this article) which featured a clip of a woman describing her fantasies about killing herself and her autistic child while that child was in the room.

Autism Speaks has a track record of promoting dehumanizing narratives around autism. They also have a history of not having any actually autistic people in positions of authority within the organization (this has changed somewhat recently). They have made some cosmetic changes to their messaging recently but they still largely benefit from their old messaging and they do not challenge or cut ties with individuals and organizations which fundraise and “raise awareness” on their behalf (I wrote about this previously).

So what kind of awareness is this campaign actually raising? I would argue none at all. We are well past the point of being able to count simply acknowledging the existence of autism and autistic people as meaningful awareness. People know that we exist. What we need now is for people to actually engage with creating a culture and a society that actually makes our lives better. As autistic writer, Sarah Luterman points out that Kiehl’s describes their special face cream (which is just a rebranded version of a product they already offered) as “a daily face moisturizer to promote autism awareness.” Luterman then astutely points out “[t]he site does not elaborate how exactly a face moisturizer would promote awareness of anything.”

Hiding behind a celebrity face and making the fundraiser so effortless also endorses uncritical engagement with a very problematic charity. People simply assume that the charity is good because a cosmetics brand and Matthew McConaughey told them so. It does not suggest that they actually engage personally with Autism Speaks in any way or engage with autistic people themselves. It may be a very effective way to raise money but it is a particularly useless way to raise awareness and it is a potentially harmful way to raise awareness. It emboldens an organization which is unpopular with the people it purports to speak for. It is infinitely ironic that an organization which calls itself Autism Speaks has spent the vast majority of its existence speaking over and silencing actual autistic people. In fact, we have our own organizations and engage in self-advocacy. The Autistic Self Advocacy Network and the Autism Women’s Network are too great examples of organizations run by autistic people for autistic people.

This campaign tells people that they can benefit a marginalized group simply by buying something. Not through any actual engagement with that group. Which reinforces ideas of separateness and the continued proliferation of false ideas around autism and autistic people.

It’s a fundamentally dehumanizing use of a saviour narrative which positions autistic people as a group needing to be saved by nonautistic people.

It’s also that truly ineffective approach where people buy something and it supposedly helps a charity. Which presents a very self-serving narrative of solidarity. “Buy a face cream that you’ll benefit from and help someone without doing anything else” That sort of campaigning particularly when trying to help a marginalized group of people is particularly ineffective because for meaningful change to occur in raising the status of an oppressed group actual engagement is needed. This is the opposite of that. This tells people that they can help a marginalized group at a distance without any meaningful action. It maintains the “othering” of autistic people.

Many autistic people have spoken out of about the campaign particularly on Twitter where the Matthew McConaughey video is being widely shared. There is even a change.org petition asking Kiehl’s to reconsider its partnership with Autism Speaks. I would add my voice to those autistic people who are asking you not to support this campaign or Autism Speaks in general.

This kind of ad campaign doesn’t raise awareness so much as it reinforces the “otherness” of autistic people. It suggests that non-autistic people can be the helpers and saviours of autistic people simply by buying face cream or sharing a video on Twitter or Instagram. It fundamentally does not in any meaningful way raise awareness about autism or autistic people.

I would ask that people take meaningful steps to creating a culture and society that is accessible to autistic people and which does not require us to be either cute children or threats to the happiness of everyone around us.

If you want to actually help autistic people and to actually be aware of us, I would suggest the following autistic activists on Twitter (just search for #ActuallyAutistic), reading autistic writers and actively avoiding and speaking out against campaigns which supports harmful organizations and which present sharing the video and buying face cream as meaningful engagement.

 

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*transcript courtesy of the Autistic Self-Advocacy Network

I am autism.
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.
I know where you live.
And guess what? I live there too.
I hover around all of you.
I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined
And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.
I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be.
I am autism. You ignored me. That was a mistake.
And to autism I say:
I am a father, a mother, a grandparent, a brother, a sister.
We will spend every waking hour trying to weaken you.
We don’t need sleep because we will not rest until you do.
Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.
I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the Eurpoean Union. We are the United Nations.
We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated.
We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children.
Our capacity to love is greater than your capacity to overwhelm.
Autism is naïve. You are alone. We are a community of warriors. We have a voice.
You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness.
You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?
You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.
Autism, if you are not scared, you should be.
When you came for my child, you forgot: you came for me.
Autism, are you listening?

 

 

 

 

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If You Care about Autistic People Don’t Just Perform Solidarity

So April is upon us and along with it Autism Bewareness Month (I stand by that word choice). Tomorrow is World Autism Awareness Day and I am already feeling suffocated by all of the faux awareness.

Awareness would be great if it actually meant that people were actually educating themselves about the realities of autistic people. If it meant promoting the voices of actually autistic people. I would be ecstatic if that real awareness translated into acceptance and action. Action, that meant fighting for the rights of autistic people. Unfortunately, more often than not we get shallow shoutouts.

The danger of those shoutouts is not only in their inefficacy and often patronizing messaging, it is also in that they benefit problematic organizations.

Yesterday, I was scrolling through my Facebook feed when I noticed that a friend had added a border to their profile picture. The following image is my own photo with the border as illustration (don’t worry it never made it onto my profile).

autism speaks frame facebook

Image description: A woman with short blond hair, blue eyes and dark blue lipstick, looks directly at the camera. On the bottom is s white border with the Autism Speaks logo (a blue puzzle piece over the words Autism Speaks) and followed by the words “different not less”

First, let’s deal with the messaging. On its face, it’s a positive message but it also doesn’t really tell you anything about me or my experiences as an autistic person. It’s also so basic that it merely pays lip service to my humanity rather than actually affirming it. It exists in the same vein as the empty “special needs” memes that promote “acceptance” through pity.

10940999_769959393059095_6633527766282533542_n

Image description: Black text on a pink background the text reads “anyone willing to post this and leave it on their status for 1 hour? It is Special Education Week & Autism and ADHD Awareness month–This is in honor of all children who struggle everyday”

Images like this often position themselves as dares, the suggestion is do you dare? are you brave enough? The message that those who don’t are morally suspect. Then the images don’t share any actual information but reaffirm the preconceived notion that to be disabled is to suffer.

Not only is this not true awareness it is active misinformation that spreads pity.

Returning to the Autism Speaks Facebook border. While is isn’t as aggressive in its approach to getting people to use it, the end game is the same. You can feel good about the fact that you’ve done something. You’ve helped raise awareness. Admittedly an awareness that consists largely of an acknowledgement that autistic people exist and a general sentiment that it’s probably best to be nice to autistic people.

It doesn’t tell you why you need to be reminded of these facts. It doesn’t tell you about the real risks of violence and bullying that autistic people face. It doesn’t tear down stereotypes about autism. Which means that people are likely going to continue to comfortably believe the misinformation they may have internalized.

This kind of solidarity is predominantly a performance. It may come with good intentions but it ultimately does little or nothing to actually help autistic people. It does make people who add that border to their profile picture feel warm & fuzzy though.

One thing that the widespread adoption of performance solidarity like that border is that it gives a lot of publicity to the organization that created it and that’s a problem.

Autism Speaks is an organization that has a long history of speaking for autistic people with little or no input from actually autistic people. It has spread dangerous narratives about autistic people. It has supported anti-vaccination narratives.

While there have been changes in the organization and it no longer promotes a cure narrative and is no longer overtly anti-vaccination. It still widely benefits from it’s history peddling those dangerous narratives.

consider how the White House is going to “Light it Up Blue” (a practice created by Autism Speaks) tomorrow for the first time in years after the Obama administration halted the practice, in large part because of feedback from the autistic community. Donald Trump is friends with Bob Wright, one of the founders of Autism Speaks and the source of many of the dangerous narratives that the organization no longer officially supports. Trump is also sceptical of vaccines.

So regardless of their official position change. Autism Speaks is still largely associated with those narratives and they crop up in very visible ways. Autism Speaks is almost certainly going to financially benefit from this connection.

Despite their official change of heart, Autism Speaks is still widely disliked by actual autistic people who remember the years of demonization from the organization. It is also far too early to tell whether the official changes in policy will translate into real change in the actions the organization takes.

So, I would ask you not to change your profile picture to include that border this April. I would ask that you not support Autism Speaks.

If you really want to support autistic people this April and hopefully beyond it, you can support organizations that are run by autistic people like the Autistic Self Advocacy Network and the Autism Women’s Network. You can read the work of actually autistic people. You can promote and amplify their voices and work. You can financially support them (shameless plug for my tip jar).

These are things that can actually create a more nuanced understanding of autism and a positive kind of awareness. An awareness that leads to acceptance and action on the right of autistic people.

 

 

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“The Accountant” Tries To Be a Unique & Authentic Portrayal of Autism Using By the Numbers Stereotypes and No Actual Autistic People

The Accountant (which stars Ben Affleck & Anna Kendrick) is a film about an Autistic forensic accountant who is also a highly skilled hit man. The people behind the film (which opens on October 14) were featured in a recent LA Times article regarding what they did to make sure that the portrayal of an “Assassin-On-The-Spectrum” honestly.

The writer, director & stars all commented on how they tried to both turn the film narrative of autism on its head and maintain authenticity.

The problem is that based on everything that is revealed about the character in the piece actually sounds pretty much exactly like the same old tired Autism stereotypes that have been done before.

To add insult to injury the stated methods of attempting to ascertain that the film was accurate and inoffensive are deeply problematic and certainly don’t reassure me that due diligence was done.

This film hasn’t been released yet so I can’t actually speak to the full completed product but there is a lot in how those involved in the film are presenting both the autistic character, how they approached portraying him, and who they asked for feedback that is worth unpacking.

Let’s start by looking at the character Christian Wolff (Ben Affleck). They present the character as an edgy, unique autistic character who is different from other autistic characters that people have seen on screen before. This is why he is

A white male, unlike Raymond Babbitt, that kid from Mercury Rising, or Hugh Dancy’s character in Adam… Oh wait.

The vast majority of portrayals of disability not exclusive of autism are of white men. This is problematic in that it erases a visual representation of the huge diversity within the disabled population.

An autistic savant, unlike Raymond Babbitt, that kid from Mercury Rising, or Hugh Dancy’s character in Adam… Oh wait.

I’m pretty sure that I’m not the only autistic person who wishes that Hollywood would put a moratorium on autistic savant characters. Savantism is rare and does not accurately represent the average lived experience with autism. In film and television the opposite is apparently true. Autistic people who are not savants are basically an endangered species.

Does not achieve a lasting romantic relationship, unlike Raymond Babbitt,  or Hugh Dancy’s character in Adam… Oh wait.

Perhaps one the the most infuriating things said about Wolff’s character in the piece is when Ben Affleck says

“He doesn’t get the girl. … I thought it was so unique and surprising. It almost seemed too good to be true.”

No Ben. This is not unique. This is an insidious overly done stereotype in films in which disabled characters are routinely denied meaningful human relationships.

It’s only unique to actors like Affleck who are used to playing nondisabled leading men who get the girl as a matter of course.

As a disabled viewer of media the thing that would be to good to be true would be a film where the disabled character (who is preferably not a white  dude) actually gets the romantic ending. Not a film where either there is no suggestion of sexuality (Rain Man) or where the romance is destroyed as a direct result of the characters disability (Adam & potentially The Accountant. That remains to be seen).

Basically, the star of the film is excited about an aspect of the film that plays directly to  a harmful stereotype. It’s also so obvious a plot point that apparently it isn’t even a spoiler that should be kept under wraps at least until after the film is released.

*sigh*

The thing that is really supposed to make Christian Wolff different is the fact that he’s an assassin. I mean disabled characters being scary & dangerous is actually a pretty standard film trope (seriously pick a Bond film at random & see what I mean). So beyond the fact  that Wolff is the main character, I’m not sure how this is new or innovative. Dangerously disabled has in fact been done to death.

Then there is the issue of authenticity. The screenwriter Bill Dubuque says

“I’ve always been interested in how the mind works,” Dubuque said on a recent afternoon. “I thought: What if you could structure a story that was a mystery within a mystery? What goes on in this individual’s mind? How does he process information? How does he communicate with the rest of the world?”

How did they test if Dubuque got it right?

They screened it for Autism charities including Autism Speaks

The fact that they screened it for organizations rather than making a point to get the film in front of actual autistic people is already problematic but the fact that they highlight that they screened the film for Autism Speaks and present Autism Speaks as a reliable source of information is doubly problematic.

Autism Speaks has a particularly controversial relationship with actual autistic people. Ignoring that controversy and presenting Autism Speaks as an accurate gauge of the authenticity of autistic portrayal is basically giving Autistic people the finger.

Seriously, it is not hard to find autistic people criticizing Autism Speaks including Autistic People led advocacy organizations. Even mainstream media outlets have covered it.

Anna Kendrick asked the parent of an Autistic child

Anna Kendrick…admits she initially had concerns about whether the film would be able to represent autism in an accurate and nuanced way.

“A friend of mine has an autistic child, and I was so worried about telling her I was going to do a movie with this subject matter and potentially getting it wrong,” she said. “She was like, ‘I’m going to tell you something that somebody told me when my son was diagnosed: When you’ve met one autistic child, you’ve met one autistic child. To have an expectation that he should act this way or you should act that way — don’t even worry about that. Everyone is different.’”

The phrase “When you’ve met one autistic child, you’ve met one autistic child” exists to fight stereotyping of Autism. The fact that it is being used to basically say “do whatever you want, it’ll be fine” is really problematic.

The fact that Kendrick asked a parent rather than an actual autistic person is also problematic. Parents aren’t mind melded with their children and shouldn’t be assumed to be accurate surrogates for the opinions of the disabled community simply because they live in close proximity to disabled people.

Again, it really isn’t difficult to find disabled people criticizing the trend of prioritizing the views of nondisabled parents over the voices of actual disabled people. Heck, it’s not uncommon for disabled people to actively push back against parent rhetoric.

So what they apparently didn’t do,

Ask Autistic People

The Accountant is supposed to be a film about an Autistic character who not only holds down a job which requires him to interact with people but who also plans and carries out assassinations. So it posits that Autistic people can in fact exist in society. It is therefor frustrating that it didn’t seem to occur to the people involved in making of that film to actually talk to Autistic people. Instead preferring third person accounts of Autism from people who are not Autistic.

The only way this makes sense is if Christian Wolff does not turn out to be a character who actually exists in proximity to other people and the events of the film (his job, being an assassin) are in fact all in his head. And I really hope that the movie doesn’t go in that direction.

The failure to actively prioritize the narratives of Autistic people is unfortunate and does not convince me that authentic and honest portrayal were an important aspect of the film.

When people claim that authenticity of disability portrayal can come from organizations and parents rather than the actual people being portrayed I am not convinced that authenticity was the goal. I am convinced that the producers of that film are only interested in creating a veneer of authenticity to fool the primarily nondisabled audience. A veneer maintained so that the film industry can continue to create inaccurate fictions of disability that do not in any way reflect the actual disabled experience.

The LA times piece only makes me wonder if I’ll be able to do the Autism stereotype drinking game with The Accountant.

Take a shot every time they mention

Theory of mind

Autistic’s lack Empathy (is this why he’s such a good assassin? if so Fuck You)

Does some unnaturally talented math thing.

I await a time when authenticity actually requires the active and widespread involvement of the people being portrayed. Preferably both behind and in front of the camera.