dear suzanne – again

Dear Suzanne,

It seems we’re here again.

I don’t want to be here. I don’t want to be having a different version of the same old tired conversation. But I don’t know what else to do. I don’t know how else to counter the harm that you continue to do in the name of some terribly perverted version of “advocacy” in my daughter’s name. Your intentions may be pure, but the road to Hell is paved with those. It’s time to take responsibility for the collateral damage that you wreak every time you take to your bully pulpit.

Have you met Sparrow, Suzanne? She’s an autistic advocate. One of the people whom you so easily dismiss, whose voices you have so stubbornly refused to include in the conversation about themselves. She was kind enough to donate her time and what I have no doubt was an immense amount of effort to transcribe your recent speech at the Vatican. You see, many of the people for whom you claim to advocate have auditory processing challenges. It can be very difficult, if not impossible, for them to take in and break down verbal language in real-time. So to make a video accessible to everyone, one needs to provide a transcript of it. It’s pretty basic stuff in disability advocacy. Stuff that says a lot about who you think is worth making the effort to accommodate, who is capable of understanding your words.

In your speech, which one can find on the Autism Speaks website under the almost comically self-congratulatory title, Suzanne Wright Gets Standing Ovation at Vatican Autism Conference, you said a number of things that we need to talk about. Things that, once again, flew in the face of everything – everything – that I am trying to do for my daughter. 

Starting with the following.

Autism is forcing parents and caregivers to slow down the frenetic pace of our modern world and look into the eyes of our loved ones, as Saint Francis did with the leper.

Is it truly possible that you don’t see how hurtful that sentence is? How unbelievably insensitive? How desperately damaging?

Me, looking in my beautiful child’s eyes (which is probably the least respectful way to look at an autistic person, but we’ve been down that road before, haven’t we?) is as it was for Saint Francis to behold the leper?

I am devoid of words to describe how wildly misguided and horrifically offensive that metaphor is.

To ensure that I wasn’t being unduly swayed my own prejudice, I searched for the story of Saint Francis and the leper. There are, of course, a number of translations available, but they pretty much all go like this one

One day he was riding his horse near Assisi, when he met a leper. And, even though he usually shuddered at lepers, he made himself dismount, and gave him a coin, kissing his hand as he did so. After he accepted a kiss of peace from him, Francis remounted and continued on his way. He then began to consider himself less and less, until, by God’s grace, he came to complete victory over himself.

After a few days, he moved to a hospice of lepers, taking with him a large sum of money. Calling them all together, as he kissed the hand of each, he gave them alms. When he left there, what before had been bitter, that is, to see and touch lepers, was turned into sweetness. For, as he said, the sight of lepers was so bitter to him, that he refused not only to look at them, but even to approach their dwellings. If he happened to come near their houses or to see them, even though he was moved by piety to give them alms through an intermediary, he always turned away his face and held his nose. With the help of God’s grace, he became such a servant and friend of the lepers, that, as he testified in his Testament, he stayed among them and served them with humility.

I suppose that, really, there is no more appropriate metaphor for your view of autism … and no less appropriate one for mine, my daughter’s, our family’s, our friends’.

You then went on to say,

In many ways, our children with autism are just like Saint Francis.

And for a moment, I had hope. Perhaps the metaphor would be upended. Perhaps there would be a moment of relief from the ever-present and insidious bigotry of your low expectations for our loved ones. But the hope was quickly extinguished. Because you followed through with this. 

They may seem trapped in their bodies and, yes, they can have physical pain, but yet they are free. Free from the constraints of time, free from the burdens of money, free from the experience and [able to] explore nature in all its glory. Free from cynicism. They are full of wonder. And in a very complex society, they have simple needs and simple desires.

Free from the constraints of money and time? Simple needs and simple desires?

How on God’s green Earth do you know what their desires are? If they can’t tell you in a way that you can comprehend, then how do you know? 

Do you ever stop to hear your words? To think about how they may sound to Christian? To my daughter? To anyone who shares their label?

So often, when I ask a question like that last one, when I plead for your organization to take the perspective of the autistic people on whose behalf you claim to be speaking, I’m told that you don’t mean kids (or adults) like mine. That you’re not really speaking for the ones who, despite living their lives through the filter of an autistically wired brain, “aren’t the ones that you’re talking about.”

I’m supposed to explain to her, I’ve been told, that, “That lady up there on the world’s stage using the word autism, which describes you, isn’t actually talking about you. That even though she’s using the word – the single word – that represents so very much of your identity, of your understanding of who you are and how you see and smell and taste and understand and interact with the world, the word that serves to remind you that your perspective, which is so different from that of nearly everyone you encounter in your every day life, is one you DO share with others – the one word that may save you from feeling desperately alienated and alone in this world – it isn’t about you in this one particular case.
 .
I’m supposed to tell her that the lady on the television only means people like her friends, and her mama’s friends and her sister’s friends, who don’t speak verbally and who haven’t otherwise reached some mystical level of “functionality” at which we will deem them competent, capable, fully human.
.
And where? Where does the line get drawn? At what point is human dignity an acceptable cost for .. well, what? What really is the end game?
.
Do you understand how hurtful it is to declare to the world as gospel (pun sadly intended) your gross misperception that those who can’t communicate the complexity of their desires must have simple ones? That those who can’t parrot back their understanding of your words must not be absorbing them? That those whose behavior is their only means of communication don’t feel and internalize the hostility of yours?
.
And do you know how much damage you do to the cause? How on Earth will we get anyone to help autistic people to unlock their potential if you keep insisting that they have none? That to offer them support is to do so as charity alone because they “won’t be able to repay us in the way we are accustomed.”
.
But I’m not supposed to concern myself with this, I’m told, because it’s not about my kid. I’m somehow supposed to explain to her that you don’t mean her, even though you include her in your census because it’s expedient to do so.
.

You began by saying,

It is truly an honor of my lifetime to be here at the Vatican and to have the struggles of our grandson, Christian, and the seventy million children like him recognized by the Holy Father.

The only time that your advocacy seems to be inclusive is when you use numbers to represent the autistic community. Because the bigger the numbers, the bigger the “crisis,” right? But no matter how you do the math, you can’t count to seventy million without including everyone on the spectrum. In your numbers, they’re all there.

.

Abstract concepts are hard to explain to my child. Abstract concepts made up of half-truths, artfully manipulated misperceptions and egregious misuses of data are even harder for her to understand.
.
And even if she did, understand, I can assure you that my daughter would not — could not — separate herself from her more disabled brethren, defining herself as something other than they, something that is, according to someone else’s twisted thinking, more sentient, more fully human, by virtue of being less autistic. I can think of nothing less humane than trading someone else’s dignity for one’s own. My daughter wouldn’t do it, nor will I.
.
Not long after Liz Feld took over the presidency of AS, I remember hearing her say that the foundation would always remember that autistic people (or, as y’all insist on saying in order to perpetuate the separation of one’s neurology from their humanity and sense of self, “people who have autism“) are at the “hub of the wheel” of your advocacy.
.
I was so encouraged by that.
.
I believed that.
.
I dare say that she did too.
.
Sadly, it’s just not the case.
 .
Before I publish something big, I ask at least one autistic friend to read it, often more. I ask because I know that my perspective is different from theirs. And I ask because if I’m truly advocating for my child and those like her, then it’s THEIR perspective which matters. Had you asked anyone on the spectrum for their thoughts before so carelessly sharing your own, we could be having a very different conversation right now. Were there a single autistic person in a decision-making position at Autism Speaks, anyone whom you had to consult, you never would have made that speech.
.
Last night, I posted a link to your speech on my Facebook page. Many of my autistic friends were hurt and angry when they saw your words. One of them, who bears your organization no ill-will and is always the first to see the good in everything she encounters, wrote the following (shared with her generous permission.)
.
I’m confused, and sad. I know autism can be hard, I get that, but at the same time, autism is a part of me. I’m kind, caring, loving, smart, creative, helpful, a good friend, and I have autism. I’m proud. Some days aren’t easy, but I have such a unique way I look at life and the world …
.
These are the people you are calling lepers.
.
To whom you refer as The Least of Us.
.
My friend, my daughter, your grandson, they are among the best of us.
They are people. They are here. They are listening to what you say about them. They are taking it all in and they are hurting.
.
The damage that you are doing is getting harder and harder to fix.
.
Please see them.
.
Please listen.
.
Or please, please stop talking.

 IMG_2728

{image is a photo of my girl, warming herself by the fire.}

35 thoughts on “dear suzanne – again

  1. Thank you. I haven’t listened/read it yet, because I wasn’t in a place where I could afford to get that angry. But I’m going to read it, and I’m going to join you in adding my voice.

    And if I can find a way to write to the Vatican or contact them about this, I’m going to do that to.

    I hope your readers/facebook followers join their voices and create a wave of information that will truly help the Vatican understand the whole of autism and not the doom/gloom/ignorance of AS.

  2. So very well said. I’m so glad that I can just share your words about that speech, because mine would be wrought with anger and that’s not what we need.

    I don’t EVER want the little guy I care for to hear the words of AS, NOT EVER. He is not less, he is MORE. At age four, he is more than I can ever hope to be and I don’t ever want him to think he isn’t.

  3. Reblogged this on Traveling Monkeys and commented:
    I had to reblog this because I have been too busy with the holiday season to give Suzanne Wright of Autism Speaks’s disgusting words the attention I want to give. I am just so disgusted by all of this. How, HOW are we to raise a child when the biggest cash cows in the autism “charity” (and I use that lightly) field spend their time poisoning the well?

    I don’t know. I don’t know how this can keep happening. I don’t know why they hate. I just know that despite screaming for them to stop, they continue.

  4. When my son was diagnosed 6 years ago, I ran to Autism Speaks. I didn’t know where else to go. Slowly, I realized the dangerousness of their words. My son was not to be feared. He was not to be shunned. He certainly is not LESS because he is autistic. He is wonderful and sweet and kind and lovable. And yes at times his world and mine implode – but that is what autism is. We would change a thing and I wouldn’t ask for it to be different. Autism is what makes my boy who he is- my beautiful son!
    Keep writing Jess and keeping telling them that they are getting it all wrong. We are all right behind you!

  5. As I am learning, no 2 people on the spectrum are alike. No 2 experiences are the same. It’s a very broad spectrum. Suzanne’s speech, however, was very narrow in many ways. One person on the AS may not be ‘disabled’ or ‘flawed’, yet another may be profoundly affected, need additional help/services, and may never be able to live independently. So take it with a grain of salt. She got her 15 minutes of fame. Whoopee. Move along. Nothing to see here, folks.

    • sadly, though, she has had far more than 15 minutes of fame. she has a tremendous global platform, the attention of world leaders, and a hell of a bank account to continue to finance it all. if she weren’t so visible and so consistently presented as credible, I would move on. since her words have such a huge effect on society’s perception of my daughter, I can’t.

      • Precisely, Jess. Thank you for putting words to my shocked reaction, dismayed thoughts and hurt feelings when hearing Suzanne speak. I become so overwhelmed I don’t know where to start. Your concerted, tireless efforts and incredible facility with words is a gift to our beautiful community, and to humanity. May your words be heard and understood by all those who need most to embrace them. And may your words soothe those hurt by others’ careless words. Thank you, Jess. -Tommy’s mom. MaryAnn

    • But like…”disabled” isn’t “flawed.” Being profoundly affected or needing extra help doesn’t make anyone “flawed.” And none of those conditions make what she said justified.

      And she’s had waaaay more than 15 minutes. She’s way over her time limit.

  6. I left this on my facebook wall with a link to the amazing words of @Invisible Strings blog post (http://theinvisiblestrings.com/5-new-years-resolutions-autism-speaks/) but it bears repeating here as well:

    Austim Speaks will NEVER speak for my autistic child — especially when the head of AS, speaking to the Vatican, reduced being autistic to being comparable to a leper.
    “Autism is forcing parents and caregivers to slow down the frenetic pace of our modern world and look into the eyes of our loved ones, as Saint Francis did with the leper.”

    Ms. Wright, I want you to hear what Mother Teresa said of the lepers because you just might want to change your tune: “The biggest disease today is not leprosy or tuberculosis, but rather the feeling of being unwanted”

    Thanks, Invisible Strings, for the most-amazing New Year’s resolutions for AS.
    Here’s to hoping they’re listening, to your words, to my daughter’s words — and if they can’t listen to an autistic, maybe they can listen to Mother Teresa’s words.

    ‪#‎PeaceOut‬

      • my daughter, all our children, deserve better

        where she cannot speak, I lend my voice — I will not have her reduced to the untouchables.

        what I will never tire of is lifting her, and other autistics, to knowing that the loudest voice is often not the one to listen to. (I just hope Ms. Wright can both listen AND hear that)

    • I met mother theresa when I was a ten year old boy, she was the most humble caring and inspiring person I have ever met in my life. I can well belive her saying something like that.

  7. Excellent, Jess! Absolutely beyond necessary and excellent. I am livid. This woman is beyond ignorant and is vile. She needs to be restrained.

    Love you,
    Mom

  8. Thank you for putting into words what I struggled to describe to my fiancé last night about this woman’s speech and how far what she has said has set back any progress our community has made. We deserve to be seen as human; with every right, dignity, and respect that being human entails. Just because I am autistic and my children are autistic does not make us second class citizens. Her opinion of us is so low, I question what it is about us that she hates so much? Is it the loss of the grandchild she thought she deserved? Is it the loss of the grand plan of life that she had laid out in her mind that was changed by autism? Where did we wrong her and why does she feel like we are merely creatures to be pitied or scorned for our differences?

  9. I couldn’t even make a coherent sentence after reading that speech, I was so angry. Thanks for writing this– agree completely!

  10. Thank you. Thank you for your part in teaching those who are willing to listen to you to treat autistics with respect. Autism is just one of the things that makes my daughter beautiful. She is not to be feared or treated as a leaper!

  11. Suzanne Wright has so much to answer for, but to bamboozle the Pope like that is bad even for her, has she no shame? I am a lapsed Catholic, and don’t bother much with the religion, but I still have some respect for the Pope. And I don’t think he would have given her this platform if he had realised just how poisonous and misleading her terminology is.

    I just hope other voices educate him to the fact that we are not like lepers. And that many of us have very complex needs and interests.

    But I guess I’ll never be allowed to tell the Pope just how rich and complex my life is, because I’ll never have the wealth it takes to counter her poison.

  12. What strikes me most, actually, reading that passage about St. Francis and the leper…isn’t the inappropriateness of comparing autistic people to the members of a leper colony, in whom St. Francis faced what he once most feared and loathed and learned to see them with joy and compassion.

    It’s the sheer hypocrisy of Wright’s quoting this tale when that is what she herself steadfastly refuses to do when it comes to relating to autistic people…to reconsider her prejudice and horror and see us as fully human and worthy of empathy.

  13. “I can think of nothing less humane than trading someone else’s dignity for one’s own. My daughter wouldn’t do it, nor will I.”

    Yep. Autism Speaks often claims that the so-called “high-functioning” don’t share their views because we fail to consider more severely disabled people. But that’s the opposite of the truth. We won’t sign on to their viewpoints or rhetoric because *no one* deserves to be talked about that way.

    Because I will not say “You have to talk about people like ME with dignity and respect, but not those people.” We won’t say “We deserve to exist and be considered whole people, but they don’t.”

  14. I have reblogged this, and I do thank you for advocating for my son and all on the spectrum to be considered equal humans to the neurotypical. I really cannot stand the words of the AS organization and I do not like the puzzle piece thing. My son is a snowflake, a star, a unique person who is whole- already.

  15. Sad! Some people just don’t think through before they make statement. She certainly might not mean harm but that’s no excuse either. You said it right when you say did she contact anyone on the spectrum before she gave the speech. We could all see she didn’t. Even in working with my kiddos, I contact other people on the spectrum to help me out so I can be the best I could ever be to them.

  16. A powerful piece. Your words, “So to make a video accessible to everyone, one needs to provide a transcript of it. It’s pretty basic stuff in disability advocacy. Stuff that says a lot about who you think is worth making the effort to accommodate, who is capable of understanding your words.” resonated deeply with me. Thanks for sharing this.

  17. You’ve written a very good essay and response to Mrs Wright. If only it had an impact on her.

    I have come to the conclusion that your opinion or mine does not matter one little bit to Mr or Mrs Wright. They have their vision of an organization to combat autism, and their fundraising machine to drive it, and thats it. And I now realize they call all the shots there.

    My letter of resignation was a very big deal in the autism community, but nothing to them. It was downloaded hundreds of thousands of times. And what did Autism Speaks say in response? Nothing. What did Autism Speaks do to address the issues raised? Nothing I can see.

    There is no discernible change in their rhetoric or actions. All autistics can do is raise our voices and let actual autistics speak. And we can hope the public can distinguish between “autism grandparents speak” and actual autistic voices. Our message is very different.

    • those are very wise – and hard to read – words that are the absolute truth. thank you for speaking them – where they matter not to the Wrights, they matter greatly to many others. staying silent is not an option.

  18. Pingback: Please stop blaming and punishing | Adventures of Team W

  19. Madame Wright – as is the rule for Normdom- was speaking in multi-lared *code*. Like most consummate social-gamesmasters, her message was intended to manipulate her targets – with the ultimate-yet-unstated goal of getting a *major* religion behind her dreams of genocide.

    Yes, and if that happens… Look at India. If one is a *dalit* there, one is legally ‘less than an animal’ (according to hindutva, anyway). Lynch mobs? Check. Institutionalized abuse? Check. Nonsense that makes the worst of “Jim Crow” and “The Ugly Laws” convolved look mild? Check-and-triple-check!

    Dalits are ‘ritually impure’ – their *taint* is catching – as if they had the religious equivalent of *cooties*.

    Most autists are treated as if they have the *social* equivalent of something ***worse*** than ‘cooties’. (which looks like ‘ritual impurity’, only social..)

    Imagine if what every Normie knows via instinct-driven prejudice is codified either as statute law or religious dogma? The holocaust was the former – and disabled people were the first to be murdered (aktion T-4). The holocaust ceased for most Untermenschen upon V-E day. For those like us, though – it continued until those killing were staring down the barrels of hot guns.

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