Archive for the ‘Autism’ Tag
Every day involves a calculation. I walk in a world that sees me as broken, less than. Whether I like it or not, the world is more dangerous for me because I have a developmental disability. When the public discourse is full of words like combat and warrior, and the real results of that discourse are poverty, abuse, discrimination, and institutions, we need to be prepared for battle. It’s not that we’re hostile or unreasonably angry, but the consequence of letting down our guard is too high. So we armor up. We pile on the pieces of objective truth as dictated by an able world. We are quick to mention, repeatedly, our degrees and career accomplishments in a way that is often mistaken for bragging. Rarely is this a prideful act. It’s a Faustian bid rife with internalized ableism. I can show you my credentials, so that you will give weight to my thoughts. I can’t help but notice amongst my educated able friends, they often don’t even know what degrees if any their friends and coworkers have earned because they value each other’s thoughts without question. No cognitive litmus tests are prerequisite.
This is not to say my degreed friends have pursued higher education in order to separate themselves from their disabled comrades. They deserve to not have the purity of their pursuits diluted by pressure to prove their worth. This is an unfair compromise imposed by an able world. No one should have to prove they are not like ‘those others’ in order to stand up and say I am just like those others.
For those of us, myself included, who lack the tools, supports, and serendipitous fortune to have careers or degrees, armor is harder to come by. We need to matter to someone or to fill a need lest our freedom crumble in front of us. We must remain hyper vigilant. We learn the danger signs, the buzz words. We gauge every interaction based on an algorithm of mistrust. There is a crushing emotional and physical toll of this state of alert, but the cost of letting our guard down is worse.
A few days ago , I watched a valued member of the disability community defend use of the word stupid. Many people did not agree with him, and as I started to join those who wished to express their disagreement, I saw two words that stopped me in my tracks.
Right there, in all caps, in comment after comment, he insisted the word stupid could simply mean POOR JUDGEMENT. He was right, one definition of stupid is poor judgement, but that does nothing to lessen the word’s impact. There is nothing simple about the phrase POOR JUDGEMENT.
For those of you who have the luxury of not being viewed as the owners of defective brains, poor judgement is a transitory event. For the rest of us, it’s an identifying factor. For you, a mistake is an anomaly. For us, it’s evidence of our incompetence.
I have been conditioned by years of experience to associate the word JUDGEMENT with danger. If I didn’t, I’d be dead. Not metaphor dead, not hyperbole dead, real dead.
People with power, doctors, psychiatrists, social workers, and the like, know better than to say the words retard or even stupid so they use the dog whistle of judgement, and just like a real dog whistle, my reaction is immediate and intense. Because I know judgement is the word they use
when they lock us in psychiatric facilities
when they deem our rapes too murky to prosecute
when they take our money and our independence
when they try to take away our children
when they deny us critical medical care, or force us to receive that care only in return for being treated like a side show attraction
While I only describe my own experiences, there is nothing particularly unique about them. These words are still too dangerous to me. I do not have the luxury at this juncture to reclaim them.
I cannot tell you what words to use. I will not police your speech. I lack both the power and inclination to do so. However, I need you to know these words are not just words to me. I can not idly stand by and assume best intentions. That may well be the kindest course, but it is also the most dangerous assumption.
What follows is my contribution to #BoycottAutismSpeaks flash blog, #LoveNotFear. It is sparse. I wanted it to be more because I believe in this effort. I believe the rhetoric of tragedy and the push to fix what is not broken hurts the connection between children and their parents, and that breaks my heart.
However, I could not bring myself to write of how my life has changed so dramatically in the last four years. It is a beautiful thing, but some stories are not ready to be told.
I am safe now. I am safe.
Some days, I need to remind myself over and over. It becomes a mantra. I have to remind myself.
Some days I forget. Some days I just cannot believe.
Fear kept me alive for the over forty years I lived as a disposable human.
The fiction that I was less than human crumbled when I was faced with my own neurodiverse children. They are wonders. They are art. They are so fully human that it fills me with awe and sets my heart on fire. I never felt fear or disappointment in their deviance from some mythic norm. They are precisely as they should be. Yet, I see myself in them, and for forty plus years, I heard nothing but how I am damaged, defective, less than. I could not apply the corollary to these loves of mine. I have always, and will always love, accept, and treasure exactly who they are. I could live no other way, even in the absence of anyone who loved and accepted me. Love outweighed my life experience.
What if someone made a compilation of your most vulnerable moments?
What if there was a running, public tally of your flaws and mistakes?
What if they told you that collection of fragile moments, flaws, and mistakes was all you were?
What if your needs, wants, and desires were judged solely on whether they were palatable to others?
What if you were treated as a set of behaviors with no intrinsic worth of your own?
It would hurt.
What follows is my contribution to the This is Autism flash blog, where many wonderful people have pieces that bring to life the beauty of divergent neurology. They are positive and glorious and you will be enriched by reading them.
However, bear with me while I am slightly less sunny. I am recovering from a couple weeks of trying to be a part of the world and getting smacked down with one access fail after another. I am cranky.
Suzanne Wright is the co founder of Autism Speaks along with her husband Bob. Last week, she wrote a vile fear mongering piece of hate speech, which is not shocking because fear and demonization is Autism Speaks bread and butter. They have used fear and money to build an empire bent on wiping autistic people out of existence. What shocked me was that this piece struck a nerve with so many people who had overlooked Autism Every Day and I am Autism. She explained that autism is living in fear. In that we agree, but while her fear is of naked hopping autistic refrigerator raiders making parents lives dreadfully inconvenient, my fear is of people, fueled by the rhetoric of the Wrights and others of their ilk, who want me dead.
Ms. Wright, This is Autism, the Autism you helped create.
This is Autism: Autism is having to work too hard.
The cultural pressure to pass is so intense, my failed attempts sneak up on me. Being natural or relaxed in public is impossible. While I’m a few generations too old to have been subjected to ABA therapy, the ABA paradigm colors how the world views us. Indistinguishable is good. Anything else is dangerous.
This is Autism: Autism is having needs treated as preferences.
Recently, I was to be involved in a project, about which I was very excited, designed to further the empowerment of individuals with developmental disabilities, but my statement of access needs, in writing, through proper channels, was ignored. I was not warned ahead of time that the environment would contain the very seizure triggers I specifically mentioned in my registration. I tried to tough it out, but after three seizures (not counting absence seizures) in less than two days, I had to admit defeat. Understand, I was dealing with people who are professionals in the field of developmental disability. These are the people who should already get it. By no means is a seizure disorder autism, but I do not doubt that my autism is why my needs were not taken seriously. It has happened too many times to be a coincidence. Autistic needs are viewed as wants, then labeled Behaviors. We are expected to control those Behaviors, or have them trained out of us.
This is Autism: Autism is having to explain myself over and over when explaining is the hardest thing to do.
When I use verbal speech to communicate, understand I am meeting you considerably more than halfway. I am expending energy that takes away from my responsibilities and loved ones. My reserves are not unlimited. If I then have to explain the same thing over and over again because it “doesn’t make sense” to you when I “look normal” or because you “know this other individual with autism who does that just fine” you insult me.* If you cannot give me enough time to form words without talking over me and (incorrectly) finishing my thoughts, you are disrespectful.
This is Autism: Autism is knowing no matter what, the majority of people I encounter will always view me as a little less than fully human. That is your legacy, Ms. Wright. In eight short years, you changed the dialogue surrounding autism. That is powerful, and impressive, and so very wrong.
I should not need to explain myself, but I do. Over and over and over again because there is always someone out there who is certain they know me better than I know myself. When I have the option, I will choose when or if I use verbal speech, and my reasons are my own and valid. I am not obligated to be verbal just because it would make you more comfortable.
If I am using my few minutes of verbal speech with you, I am offering you something limited and precious. I have carved out a section of my physical health and peace of mind and given it to you like a pretty slice of birthday cake.
How long do most of my interactions with people take?
Three minutes in a drive thru,
Five minutes at the grocery checkout,
Ten minutes of social gathering small talk,
Fifteen minutes for a neighbor to borrow some sugar…
In my verbal marathon, at fifteen minutes I hit the wall. I can try to push past that, but there’s no guarantee I’ll finish the race. I am no longer running on solid ground. After fifteen minutes, maintaining verbal speech is like running on a tightrope. It wobbles. The margin for error is imperceptibly tiny. If I falter, the only option is catastrophic failure.
At best, I can walk this tightrope for the next twenty to forty minutes. These are the minutes when I stammer and rub my arms raw. These are the minutes when I say words that are not what I mean. These are the minutes I am locked in decades old scripts that do not allow for dissent or self preservation. In my head, past abusers bubble up to my consciousness screaming my failures, derailing my thoughts. These are my wounded animal minutes. I will accept almost anything, or lash out instinctively.
I cannot make it past those forty minutes. No amount of trying, wishing, or believing in myself changes that fact.
Forty minutes is just enough time to spend a life surfing the gap. I tried to make it in the work force, and it almost killed me. Not in an I’m miserable and want a good cry, a glass of wine, and ice cream sense (although that counts), but in a high blood pressure induced daily multiple blackouts and increased seizure rate sense. I have too little work experience to qualify for Social Security when I’m sixty-seven, but I am not able to qualify for SSI. If I honestly portray my abilities and limitations, I leave my children vulnerable to intervention by child protective services because disability in this state is still legal grounds for child removal irrespective of any other factor.
Most of my forty minute dog and pony shows are to keep judgement off my parenting. This is simply an extra responsibility required when parenting while disabled. There stands my line. I will not sacrifice my children at the alter of any cause no matter how just or righteous. What Should Be will not protect them, and my primary obligation is to their well being.
I often don’t react to events in real time. The speed of my reaction bears no relation to the magnitude of an event. I need time to process. Time to sit on my feelings and sort emotion from fact, communication from gibberish, and truth from the convenient memes of utter bullshit that permeate any culture. I am careful in my reactions. I do not hold to the notion that if enough people say something, if they seem to know what they’re talking about, and if they say it with enough confidence, then it must be true. A lie told with authority is still a lie.
Do not mistake my quiet for silence. The words are there, and given time to parse them out I will endeavor to make myself heard.
I am a gentle person. I seek in all I do to harm no one, and like all humans, I fail more often than I like. But do not, under any circumstance, mistake gentle for meek.
So I want this understood by the person (and others of that ilk) who felt compelled to spend almost thirty days typing rape centered death threats coupled with my name into google so I could read them in my blog stats:
I am not afraid of you. I have not been writing because I have been busy with my life, not because you shut me down or put me in my place. No matter how many ways you combine my name with the words fuck, kill, and autistic in some pitiful rape culture “mad libs” game, it does not make me less of a person. I am real, valid, and surrounded by love. You are irrelevant to me.
The only reason I post this is because it stands as another piece of evidence. When autistics speak of hostility they face, that is not imagined.
When women posit that sexism still exists on an ugly, violent level, that is not imagined.
It took me a lifetime to get where I am; to reach a point where I believe in my own worth, and self determination.
Now that I am here, nothing you can do is going to make me go away.
I write quite a few letters to organizations, companies, and individuals in the hope to bring an autistic’s perspective to issues surrounding autism. In general, the responses I get fit into three categories: dismissive, angry, or (most often) silence. What follows is a copy/paste from an email I sent to a company that had product placement at this years AutismOne conference. I did not write expecting them to be able to pull out of the conference on two days notice, but wanted to change their perspective in the future. What unfolded was the most open email exchange I’ve encountered so far. Therefore, I have redacted the companies name so as to not put them in the line of fire on an issue that has so many emotionally charged supporters on both sides. Please read through to my thank you notes at the end. I could not do this without the brilliant work of these writers.
I am Bridget Allen. I am an autistic woman living in north Texas where I spend much of my time being a mother and grandmother. I am a huge fan of your products. A quick inventory of my refrigerator yesterday showed fully one third of the products inside bore a (your) label. As a vegan in Cowtown, y’all are a lifesaver. Last night, I received a direct message on Twitter asking me to outline my concerns with your support of the upcoming Autism One conference. My issues with Generation Rescue and the Autism One conference are threefold.
First, many speakers at the conference espouse an anti vaccine agenda that has been widely debunked by objective scientific research. (see American Academy of Pediatrics http://pediatrics.aappublications.org/content/123/1/e164.full ) This endangers all children, not only those not vaccinated who risk contracting potentially lethal illnesses, but also those compromised by a weakening of herd immunity.
Second, this conference is full of proponents of risky and excessively expensive “treatments” that prey on the fears concocted by images of autistics as ‘stolen children’ who are damaged and broken. (http://blogs.plos.org/thepanicvirus/2012/05/15/more-media-stupidity-chicago-sun-times-runs-propaganda-piece-for-jenny-mccarthys-anti-vaccine-conference/) Speakers include the likes of Mark and David Geier, two men drummed out of the medical community for autism treatments that consisted of chemically castrating young autistic boys. (http://leftbrainrightbrain.co.uk/2011/05/maryland-board-of-phyicians-mark-geier-endangers-autistic-children-and-exploits-their-parents/) Children’s health and futures are put at risk by these treatments while their parents are bankrupted paying for them. In addition, Autism One does not have a history of welcoming discourse or even open coverage of their event. Here is a synopsis of some of their reactions to those who do not completely agree with them (http://lizditz.typepad.com/i_speak_of_dreams/2011/05/autismone-again-expells-peaceful-non-disruptive-registered-attendees.html)
I have a twelve year old autistic son myself. While he has been given speech, occupational, and physical therapy to compensate for some aspects of this developmental disability, we have never emptied out our savings and little of his services took place outside of school hours. He has simply been a boy learning how to be the best version of himself he can be. The result has been an advanced studies honor student who has friends, creates art, and takes preAP courses to further his goal of becoming an entomologist. I firmly believe if I had treated autism like a tragedy, he wouldn’t be thriving today.
Finally, organizations like Generation Rescue and events like Autism One thrive on a false narrative that autism is a tragic illness affecting children; robbing them of the ability to love, connect, and function. In reality, autism is a developmental disability. It does not go away. It cannot be cured. Autism in adults looks different than it does in children because as we grow up we learn just like anyone else. We mature, we develop coping strategies, and we adapt. Is it often difficult? Certainly, but that doesn’t mean we are any less valid as humans. We have real contributions to make to society. Disability rights are human rights.
This narrative is a prime contributor to the denial of basic rights. It dehumanizes the very people it purports to want to help. It may be hard to imagine, but frequently autistics and other developmentally disabled people are killed by parents and other caretakers. When this happens the sympathy is reserved for the person who committed the violence rather than the victim. I recently lead a local vigil of honor and remembrance for those our community has lost. (http://www.prweb.com/releases/2012/3/prweb9329098.htm)
I truly appreciate your time, and thank you for the opportunity to express my concerns.
Many thanks to:
Seth Mnookin – Before he wrote great stuff about autism and vaccines, I already had my fangirl hat on because of Feeding the Monster.
Sullivan from LBRB – who manages to be both rational and engaging. That’s harder than it looks.
Liz Ditz – who says things I want to say, but better and with a lot more guts.
Dr. Paul Offit and Charlotte A. Moser
Danielle A. from ProfMomEsq – who was a link providing machine at a time when I had 10,000 things on my plate. Granted, she had 10,015 things on her plate, but she is a better plate spinner than me.
Ari Ne’eman – who responded to my link request within minutes of asking. Great motivation.
Additional thanks to the Thinking Person’s Guide to Autism. In the course of my email exchange, I was asked for some sources for evidence based information and services for parents new to autism. I was thrilled to be able to have one source that provided everything I was asked about. What you have created is invaluable.