Breaking down bias in reporting Autistic concerns

Sometimes autistic people chime in to tell someone, “Hey, the thing you’re doing purportedly on our behalf is actually harming. Please stop.” The respectful response would be, “Oh I’m sorry! I didn’t realize that was problematic and will stop immediately. What’s a better way I could proceed?” – and then actually take the actions accordingly. Unfortunately, some people just won’t accept any remark that they aren’t actually doing the good thing they think they are and then double down on their initial action, even going so far as to make those objecting the problem, even if they were supposed to be the “beneficiaries” of the unfavorable action.

When it’s a celebrity getting called out, the response can have far-reaching effects. If the celebrity chooses to cling to how correct they believe themselves to be despite the affected community’s outcry, fans of the celebrity who don’t have a vested stake will frequently come to their defense at the expense of those to whom it matters most.

I’d like to break down an article written a few years ago to demonstrate how valid concerns can be dismissed and the affected person vilified with language use. Unless specified otherwise, all quotes are from the article listed immediately below.

William Shatner Under Fire for Spreading Autism Awareness by bobb on 05/04/2017

“Earlier this week, the White House and autism organizations around the world celebrated the 10th annual World Autism Awareness Day. Actor William Shatner, best known for his role in Star Trek, changed his profile icon and tweeted his support into the related hashtag to draw awareness to the disability.”

The beginning of the article is designed to set up William Shatner in the positive role and show that he has support, though it doesn’t say which “autism organizations” actually celebrated the “awareness day”. Note that support from the White House—in which the sitting president at that time was Donald Trump—was the very first thing that the author wants us to hear, as it will come up again later. All positive words like “celebrated” and “support” are used to describe the actions of the White House, the nebulous “autism organizations”, and Shatner.

“Today, he was inundated with outrage from social justice warriors likened his support for autism awareness to hate speech. They further expressed their anger towards organizations like Autism Speaks, which sponsored the event.“

Now the author moves into very negative phrasing for people who were pointing out the harm of Shatner’s actions. We’re primed to feel sorry for person “inundated with outrage” using a loaded term (“social justice warriors”) often used to vilify people who care about equitable treatment for all members of society. The goal of portraying autistics with real concerns as angry, overreacting people is already obvious from this point.

“Autism Speaks is one of several global organizations that supports finding solutions across the spectrum and catering to the needs of individuals who suffer from it and their families. Critics refer to the search for a cure as a form of ‘eugenics.'”

Autism Speaks (AS) often refers to us and our families as “suffering” because of our neurotype and approaches us as a problem to be fixed and want to wipe out autism. Many autistic people view our challenges more from the social model of disability¹ instead of the medical model. Any group that looks at us as a problem IS a problem; and yes, when the goal is to eradicate your neurotype through “research”, that’s by definition² eugenics.

“Shatner fielded a host of complaints from critics who demanded he preach “autism acceptance” rather than awareness—some of whom made it a crusade to dedicate themselves against Autism Speaks. He was linked to an article on Forbes³ decrying awareness for the disability. The hysterical article based most, if not all, of its criticism towards the organization on its founder’s longtime personal friendshipwith (sic) President Trump.”

This is more loaded language that primes readers to disregard the content of the article using inflammatory terms such as “host of complaints, “demanded”, “crusade”, “hysterical”, “criticism”. If there was group dedicated to making your existence out to be a problem, you might also have some strong opinions. Calling the above mentioned article “hysterical” is incorrect and says more about the initial article’s author and their unwillingness to consider autistic viewpoints.

A minority of the article—certainly neither “most” nor “all”—that had been linked to Shatner is about how the AS leader is linked with the then sitting president, though it’s understandable that it would be mentioned when it is brought up. It’s interesting that it’s apparently fine to bring up the White House when it supports this article’s narrative, but not when another article points to associated problems.

Next the article goes on to quote Shatner’s response to autistic people who are trying to explain to him that his actions are counterproductive:

“’Instead of being the social warrior fighting against a charity; find an organization you do align with and become their advocate,’ he tweeted. ‘I supported an awareness day hashtag that appears to be scorned by a group that doesn’t want awareness.'”

Does the author then mention that autistic people actually HAVE our own organizations and that autistic people mentioned this to Shatner? No, that’s just left hanging.

“When one critic told him that the reason Autism Speaks is bad because it isn’t run by autistic individuals, Shatner responded: ‘I run a charity focused mainly on raising money for equine assisted therapy for disabled children. I’m not a child and I’m not disabled.’”

It is absolutely not okay to run groups that are purportedly to help a particular demographic without actively involving adults of that demographic that are able and willing to advocate on their own behalf. For example, I shouldn’t start up a group to try to help black men, fail to actually involve any black men in the functioning/purpose/etc. of the group, and completely ignore/block any commentary/suggestions from black men when I’m told I’m hurting more than helping. This is no different. I do hope that Shatner doesn’t dismiss any concerns—should there be any—regarding his own charity from the affected families like he dismisses autistic people about organizations that affect us.

“While a search for a cure to autism seems like a condemnation of autistic individuals—it isn’t. No one’s suggesting they haven’t a right to exist.”

Actually, yes, AS has shown⁴ clearly over the years that they want to eradicate my neurotype.

“Who wishes to be autistic and wishes hardship onto others?”

There are two separate ideas here, and they really show this article’s bias. I’m fine with being autistic, and quite a lot of us are. The question as posed, however, assumes hardship—whether it’s that we have hardship or that we cause it. If it’s the former, then maybe LISTEN instead of dismissing when we tell you what you (in this case Shatner) are doing that hurts us and then DON’T DO IT. If it’s the latter, I refuse to apologize for the inconvenience you feel by the fact that we don’t share your neurotype and have difficulties with the barriers society puts in our way.

“It would be akin to having a deaf child and refusing to provide them with hearing aids.”

Many deaf people embrace their deafness and don’t feel the need to be hearing. Some deaf people do want the assists. First, that’s their choice, not a hearing person’s choice to make for them. Secondly, for those of us who do want some form of assistance, AS offers Applied Behavior Analysis (ABA) a highly problematic and abusive “therapy” that autistic people have come out heavily against, are centered on preventing us in the first place, and make us out to be tragic and burdensome.

“It’s encouraging that we may one day find a cure through science.”

No, it is not at all encouraging to think my neurotype is so devalued that the article’s author—whose bias is shown very clearly here—and others would rather us be not who we are altogether. It’s a difference in brain wiring, not a disease to be “cured”.

“However, some people—like the ‘self-advocates’ criticizing William Shatner—are discouraging such research for the sake of feeling special by setting themselves apart from ‘neurotypicals’.”

Point missed entirely, and if this closing remark doesn’t show the author’s disdain for us, I don’t know what does. We aren’t trying to feel “special”; we want to be treated with basic respect.

I don’t know if “bobb”, the author of this article, is a particular fan of William Shatner or not, but it’s abundantly clear that they don’t hold any respect or regard for autistic voices.

1 http://1https://www.neurodivercitysg.com/medical-model-vs-social-model.html

2 http://2 https://www.google.com/search?q=eugenics+definition

3 https://www.forbes.com/sites/emilywillingham/2017/04/01/no-foolin-forget-about-autism-awareness-and-lighting-up-blue/?sh=4eb31b094aac

4 https://medium.com/artfullyautistic/autism-speaks-deception-eugenics-and-abuse-618cf65c094a

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Confession – I Was An Autism Mom™

The Bullshit Fairy

Well kind of. I tried to be. Because I thought that’s what you did when your child got diagnosed with Autism. I wore puzzle pieces proudly and fought like a warrior.

But I never really fit in. I never for one second believed my Autistic child was broken or a problem to be solved. I saw that the puzzle piece seemed to be “the thing” that unified us all, so I wore it and when I started blogging, I made the puzzle piece part of my logo for The Colour Fairy.

And I kept finding little puzzle pieces on the ground in random places, which made me feel all warm and tingly inside.

But my blog and Facebook Page, was again, not like the other Mom’s.

I embraced my son’s uniqueness and mine. I never shared intimate photos or wrote about how hard my life was. I would speak about…

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Product Review: Turan (Aphrodite) Oil by Lykeia Botanica

I’m a big fan of customized oil blends for religious/devotional purposes, making them at home myself at times.  As such, I was thrilled to receive a tester of a lovely new oil for Turan (Etruscan name for Aphrodite).

This devotional oil by Lykeia Botanica is described as:

• Over a broken up cinnamon stick
• Rose oil
• Bergamot oil
• Myrrh oil
• Neroli oil
• in an argan oil base

Rose and myrrh oils are frequently found in the scents I wear, but not as often the bergamot or neroli; that being said, I love this oil.  It’s well balanced, fresh but subtle, and has complex undertones.  The aroma is stronger in the vial that on the body, as one might expect, and it’s nice and light on the skin.  The fragrance is barely noticeable after a while, which suits me just fine because of my olfactory sensitivities.

Probably because of the rose oil and argan oil, the oil leaves the skin very soft and silky as well, which seems very appropriate for the Goddess to whom this oil is dedicated.

If you’re the kind of person who likes using oils on statuary, a little of this would go a long way, and the purchase and use of this oil would be luxuriant and honoring.  Very nicely done!

 

DISCLOSURE:  I received a tester of this oil for free in exchange for my honest review.  Thank you, Lykeia Botanica!

Autism Moms™ Allow Me To Explain

The Bullshit Fairy

I have noticed there has been an increase to activity on a post I made last year about Autism Moms™ and the way they use that “term” like a badge of honour.

I am also noticing an influx of Autism Moms™ right here on this page. But don’t be scared my dear followers. Just don’t make eye contact and you should be ok. 😉

I understand why they are angry. It’s the same reason they use the term Autism Mom™ in the first place. They want recognition for all the hard work they do and feel it’s their reward and their right to use it.

So rather than reply directly to their pages because I know they wont listen and there is soooo many of them, I thought I’ll write a blog post. The Autism Moms™ often will say the same thing over and over too, (at least they are consistent!) so I…

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This is the last time I’m going to say this

Why I Left ABA

The more I know about ABA, the more I want to prevent anyone from undergoing it.

Socially Anxious Advocate

Trigger Warning: ABA, ableism, institutionalized child abuse

[Image Description: A bright red door with a brass knob and a faded mail slit. To its left, there is a long, dark windowpane with some decoration and smudges. The door itself has chips in its paint and markings on it, despite the bright color. It is closed, possibly locked.]

When I first became an ABA Therapist, I was thrilled. I was actually going to use my psych degree, get paid more than minimum wage, and above all, make a positive difference in Autistic children’s lives. Or at least, that’s what I thought.

Now I look back, and the year I spent working in ABA is my single greatest regret.

When I left, it wasn’t a decision I made overnight. It was a long, difficult process, full of denial and confusion. I don’t enjoy talking about it because I did so many wrong things that…

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ABA

Very important reading for anyone who loves an autistic for whom Applied Behavior Analysis (ABA) has been recommended.

Autism Speaks – hate speech and eugenics

Crusading Against Hate: Why I #BoycottAutismspeaks

Written by FoxTears

Originally posted HERE

If you’ve heard of autism, you’ve probably heard of Autism Speaks. For those who haven’t, they’re a USA-based “charity” (scare quotes entirely justified), and one of the biggest voices out there when it comes to talking about autism.

Autism Speaks is not a very nice company.

First, there’s the fact that all of the positions of power in the organisation are held by non-autistic people. This is about as appropriate as a bunch of white people making decisions for a charity claiming to be for the aid of people of colour, or a charity composed entirely of men discussing women’s rights. They had an autistic advisory board member once. He resigned as a result of Autism Speaks’s attitude towards autistic people. They’re too far removed from the reality faced by Autistic people. The fact is, though, that they don’t really cater for autistic…

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Don’t cheapen heroism

I’m getting tired of people misusing the word “hero”. One has to do more than merely exist and be generally admirable to be a hero, and to call people heroic who have done nothing particular but die prematurely diminishes the word for people who have actually earned it. Heroism implies having gone above and beyond what was required in one or more acts of bravery that may endanger the hero, resulting in the lives of others being saved and/or significantly changed for the better in concrete ways. Heroism is NOT simply living a good life, being a pleasant person, or living through one’s own struggles without complaining.

For whatever reason, however, some people are not satisfied to simply extol the virtues of the person they admire in a truthful manner, but they also feel the need to tack on how “heroic” such people are or were. This phenomenon seems to happen more often once the admired person is deceased, when saying anything more moderate can feel insufficient to the level of grief felt at the death – especially if the demise was untimely.

It does a disservice to the true memory of such persons, however, not to simply say something more like, “This person is/was valuable and made a contribution to society,” instead of falsely equating such a life with heroism. It does not make it less tragic that someone died just because that person wasn’t actually a hero, nor does it lessen the esteemed living to acknowledge them in more honorable ways. Additionally, for all those who have put their lives, futures, reputations, families, security, etc. on the line in TRUE acts of heroism, it devalues the word to call anyone we admire in some way a “hero”.

People who are good at sports are not heroes just because they play well. Someone whose identity makes them stand out in socially difficult ways is not a hero just by quietly living as themselves. If someone saves a grandmother from getting hit by a bus, that person is a hero, whether or not s/he is any good at sports, lives an authentic life in the face of adversity, is a generally admirable person, or is endearing to others.

Let’s not cheapen the word “hero” by using it to mean anyone we like. Words become meaningless when they are overused to mean too many different things. Let’s value our real heroes by reserving the word for them.

What to do about other people’s head coverings

Have you ever seen someone wearing a head covering of some sort and been confused how to respond?  Fear not!  This handy guide will help you navigate proper etiquette.

Q:  Should I make loud comments about how weird the person wearing a head cover is so that everyone around can hear?  Can I tell them to go back to their own country and leave mine?

A:  No, that would be in poor taste and would reflect poorly on your judgment instead of theirs.  Additionally, the person may be a citizen of your own country who has chosen to cover the head; even if the person is from elsewhere, it doesn’t give you a right to be a jerk.

Q:  What if I just say it quietly to the person next to me so that only that person and the person with the head cover can hear?  Or what if I only say it so that the person who is next to me can hear and not the person in the head cover?

A:  No,that is still being rude, just to a smaller audience.

Q:  But I really want to express how bizarre they look!  How can I do this without being rude?

A:  Write a note that expresses how you feel, and then immediately destroy it without showing anyone.  In this way, you get your feelings off your chest but haven’t crossed over into inappropriate behavior.

Q:  What if I think they need to not be wearing that head covering and/or that they must be oppressed to be wearing it?  Should I make a big stink and/or try to forcibly remove their head covering?  Why are they wearing that thing on their head, anyway?

A:  Absolutely not.  You should never attempt to remove the clothing of another person without their consent, and to do so constitutes assault.  Additionally, it is none of your business if they choose to keep their head covered, and to assume you know the reason is presumptuous and often incorrect.  Please refer to the following chart to find out what you may reasonably assume based on a woman having cloth on her head (and it is equally true for men):

Any of these things MIGHT be true of a given person, but there is no guarantee that the man in a cloth cap or woman in a head scarf belongs to a particular religion or is ultraconservative just because you’re only used to certain stereotypes.  Additionally, head coverings don’t make a terrorist; willingness to act broadly on narrow-minded hate does. What you may also reasonably assume is that the vast majority of people, with or without head coverings, dress in the manner they personally see fit, while a small minority of people are pressured into more or less clothing by others.  Don’t be the person trying to pressure someone into less clothing just because that’s what you’re comfortable seeing.  The reasons people wear head coverings are many, such as:

• religious teachings
• cold head
• lack of hair due to any number of conditions
• fashion
• culture
• tradition
• energetic conservation
• modesty
• keeping hair tidy for doing chores

While any of the above could be true, it could be another reason altogether; and regardless of the reason, it boils down to the personal preference of the person whose head is covered.

Q:  That person must be stupid to agree to wear a head covering when they don’t have to, right?

A:  Wrong.  The head (and sometimes hair) is covered, not the brain.  You absolutely can’t make accurate assumptions about someone’s intelligence based on whether they wear a head covering.

Q:  What if people of my faith group are supposed to wear head coverings, but that person of my faith group isn’t doing it?  Shouldn’t I help them by berating them about how badly they are following their faith until they comply?

A:  Most faith groups that require all or some of their adherents to wear head coverings also have teachings about not attempting to interfere between others and their relationship with Deity.  If your religion says you should do something, use your own conscience about whether to follow that teaching, but don’t harass others about doing the same.  Raising a big stink about others not covering or not covering to the degree you deem appropriate just feeds the stereotypes outsiders often have about adherents of religion being “forced” into covering.  It’s not much of a free choice when the community makes a gigantic fuss when a person doesn’t conform to the approved choice.  Often pushing too hard on someone to fit your standard can generate backlash or drive them in the opposite direction altogether.  Offering a quiet example of how you believe your faith should be lived is often much more compelling than griping at the non-compliant.

Q:  I know my friend/family member/co-worker/etc. has a right to wear something on the head if desired, but I miss seeing the hair!  I think they looked so much more attractive without the cover!  Certainly I can say something about it since I care, right?  

A:  Sorry, unless they ask or you are married to the person, it’s not your business.  I may think your hair would look better in a different style, but it would still be very rude of me to offer my unsolicited opinion that you should change it – even if you’re someone I love.  Many people aren’t particularly fussed about whether they look “pretty” or not and are more interested in being tidy and hygenic.  Even if someone does want to be attractive, standards of what makes a person attractive are highly subjective and vary wildly depending on whom you ask.  There are SO many ways to be attractive, and their version of attractiveness doesn’t have to match your ideals of beauty. Erin McKean hit the nail on the head when she said,

You don’t owe prettiness to anyone.  Not to your boyfriend/spouse/partner, not to your co-workers, especially not to random men on the street. You don’t owe it to your mother, you don’t owe it to your children, you don’t owe it to civilization in general.  Prettiness is not a rent you pay for occupying a space marked “female”.

Q:  Is it okay to ask a lot of personal questions about why they wear the head cover?  

A:  This one is situationally dependent.  Do you know the person socially?  If so, you might test the waters by asking something like, “Is it okay if I ask you about your head covering?”  If they say yes, proceed in a manner that attempts not to make assumptions; if they say no, be prepared to drop it right away and not bring it back up.  If you don’t know the person, ask yourself if there’s any real need for you to know or if it’s just to satisfy your curiosity.  If you are asking so as to accommodate their religious preferences or health needs, then go ahead and politely ask as outlined above; if you are just curious, it may be best to just leave it alone.  There’s really not a tremendously good reason to try to make someone you don’t know have a protracted conversation about an item of their clothing just because you don’t understand it.

Q:  What are some other ways in which I can be sensitive to people wearing head coverings?

A:  Until you are explicitly given a green light to do otherwise, do not touch a person of the opposite gender who is wearing a head covering.  While it is true that the person may or may not be covered for religious reasons, those who are covered for such reasons often follow codes that very precisely limit the physical interaction that men and women may have, including very casual touch.  Don’t assume that such a person will want to shake hands, be patted on the back, or hug you.  Feel free to ask if you are uncertain.

Educate yourself about the wide variety of head coverings that people around the world have historically worn, some of which are still worn now. Some of these coverings may be outside the realm of your personal cultural experience; but the world consists of a fantastic diversity of people, not all of which will be like you.  Being different than you doesn’t make someone else wrong or bad if what they are doing (like wearing a head cover) isn’t hurting others.

If you see someone being harassed because of the head covering they wear, step up and say something!  It isn’t okay to bully people just because they look, dress, or worship differently than you, and we can all be a voice for understanding and acceptance if we are willing to see others as our equals, worthy of human decency.

Final thoughts:

Treat people with kindness and realize that a piece of cloth on the head is neither scary nor cause for mistreating/interrogating the person wearing it.  Freaking out over a piece of cloth on the head is just silly.