Dear Billy
03 Aug 08 by jeff
I got a piece of email from “Billy” the other day. It is not the first bit of angry writing I’ve received, nor - obviously - the last. And I am going to assume that I am far from the only one in the crosshairs.I also learned - many years ago when the internets were very young - that you cannot simply change the mind of an angry man.
All that being said, there is a possible benefit in responding, if it is done in public where others may consider the exchange from a distance. So, I will try to discuss a few of the less vituperative sections here, instead of furthering a futile back-and-forth in email. Those always wear me out. :-(
Billy begins:
I don’t think the people like you, that make blogs and websites with your type of content, are identified enough as crazy or someone who uses insanity. Why do you enjoy bashing the idea of making cures for certain mental disabilities? Why do you hate to see a child get better through intervention based means? I just wonder what your REAL motivation is for it.
Well, Billy, let me start with this: I am not bashing the idea of cures for certain mental disabilities. I am bashing those people who make money off of people who desperately want a cure for something that can’t be cured. I’m bashing those who declare all Autistics to be monsters and leaches - at the very least, sub-standard humans. I’m bashing those who insist that the only Autistics that deserve any real consideration are those between 2 and 10 years old, and then only if they stay non-verbal, and cute.
When someone sells a desperate parent chemicals that risk a child’s life by promising to turn the child “normal,” it’s clear the child’s well-being is not the first priority. Most autism is genetic. Removing the autism from a child - even if genetic remedies were possible - would be much like treating them with a brain transplant. That might work fine for the parent, but it doesn’t do much for the child, does it?
Now, if a child actually gets the kind of treatments that actually do improve their quality of life, or enable them to communicate better, or just plain make them healthier and happier, I would celebrate that kind of intervention. Again: I would be very happy to support interventions that really make a child’s life better.
As for motivation, that’s easy; I want every person - at any age - to be as empowered and supported as possible. I want to attack every attempt to control, modify, suppress, or destroy vulnerable, “unsatisfactory” people. Most of all, I want to stop those with power from being able to pass summary judgment on the worth of the lives of those less powerful.
I feel really offended every time someone sticks up for disability and the things that cause it. Disability isn’t diversity. It’s misfortune.
Well, I am certainly not saying that disability is a Good Thing. But I do believe it is better to focus on empowerment than to spend gobs of money on telling people how awful it is to be stuck living with a disabled person, or pointing out how much of an economic drain they are. It makes a lot more sense to spend money on the changes to our society that help the disabled person live the best life possible, and to help them be productive, proud people.
Yes, it is hard to parent an Autistic child. Of course it is. It’s hard to find advice or help, since so few people have tried-and-true experience to pass down. I’ve raised a couple of my own, and there were many, many days of frustration and tears. And there was that frequent sense of constant failure. I didn’t need a bottle of chelation chemicals, or a gluten-free cookbook. And I certainly didn’t need someone telling me that it was the fault of anyone in my family - child or parent.
What we really needed was advice and support. I needed someone to tell me that there were tools and coping techniques, and where to find them. And I needed permission to be proud of myself and my wife and my children.
Well, we managed through by ourselves. Now, we tend to be a bit short on patience when people try to convince us that the only hope is to give more money to genetic research and to PR campaigns that piant Autistics as lost an hopeless. Very short of patience for that kind of crap.
I wonder if you ever have to confront those like me about your contentions, besides parents of those with spectrum conditions. I might not be, anywhere on the spectrum, although one shrink said that in his opinion I was, but I am tremendously and unusually mentally disabled. I know what it’s like to live and never completely grow up, living at home, dependent, with no income after getting out of school with no other opportunity in reach. … [especially personal info deleted for length] … You don’t care about how rotten it feels to be disabled, lacking precious abilities others have, even having tremendously lower ability than some others. You act like being mentally weak doesn’t necessarily cause low quality and enjoyment of life. Every time I see one of these poindexters on their blogs spout such vile and disingenuous propaganda, I cringe. All I sense is selfishness and people wanting to stay on top.
You may be mistaking me for someone else. I am not a member of the “Autism = Superpowers” camp. My message is a bit more plain. I believe that it is wrong for you to be trapped at home, marginalized, and ignored. For me, the true message of Neurodiversity is that we need to move past the questions of causes, cures, and how “abnormal” one person is compared to another. Instead, we need to learn that every person has value to them, and that it is wrong to force them to keep that value hidden. It is wrong to stand a person up next to a template and score them by how close they match “normal.” It’s also wrong to put everyone on a spreadsheet and judge their worth on how little help they need. Templates and bottom lines are the tools of machines, not humans. We all need to re-learn to be humans.
So, no, I don’t promote turning away from the truth that many Autistics have to work much harder to make in our society than most people do. I don’t promote turning away from any truth, ever. I do believe it’s wrong to change that truth into the lie that Autistics are destined to live useless, sad, pitiful lives. And I don’t believe that your own fate is to sit in your parents’ house and be sad and angry. Wouldn’t it be nice if someone spent the time and money to get you what you need to be a successful, strong person? Not telling you that you’re doomed, or even that you aren’t really disabled, but just plain reaching out to give you a hand up the hill?
I don’t think that emotionally vulnerable parents should have to encounter this slime when trying to look for support and hope. I hate that so many children will be thrust into the future without decent lives, due in part to the greed and selfishness of the establishment, and because that negligence is partly made possible by the connivance and sadism of some others. I wonder what kind of humanity is out there when your intentions are in some people.
We agree completely in this sentiment. Vulnerable parents and Autistics should encounter people who ask them what they need to make life valuable and exciting. Then they should do their best to fill those needs. That is ALL they should encounter - in a perfect world. However, they often encounter greedy, selfish people - some of them even fellow parents and Autistics - who try to place the vulnerable in positions that feed that selfishness. They are told what a plague they are, and how fruitless their attempts to succeed, and how much pain they bring their families. They are held up as living advertisements for criminally experimental drugs and diets, greedy fundraisers, disingenuous researchers, political wannabes, and ambitious lawyers. They are abused by angry spokespeople, and misguided, vicious “advocates.” They seldom meet people who simply ask them what they need, and help them get it. And they almost never meet people who tell them they have a valuable place to fill in society.
That’s what real Neurodiversity is all about. All of us - regardless of personal obstacles - have a valuable role to play, and we must get you what you need to empower yourself to fill that role. that’s all there is to it. No superpowers, no dismissing the difficulties, no subterfuge, hidden agendas, or kind lies. If we step, together, past all the recrimination, greed and guilt, we should be able to reach out and bring everyone else along.
So, Billy, if you have any more questions, or personal experiences or observations to add, please feel free to comment here. You have every right to be angry about how you’ve been treated, so far, and I’d be very happy to try to find some people who will treat you better.
I’m quite surprised and glad you would talk about my complaints in public, as those with your purported views seem to like to avoid confronting such complaints. But I realize again that it seems that propaganda is used to obfuscate even the peskiest of problems or inconsistencies. I don’t see how all of these condemnations of mean things said about autistics, or of the exclusive focus on child autistics, makes your anti-cure views less disagreeable. Constantly complaining about conformity and putting the word normal in quotation marks, where conformity and normalcy aren’t the real goals of recovery, shouldn’t convince people to shun interventions.
How can you be believed to not be against cure for mental disability when you constantly bring up sensitivity emphasizing rhetoric in the discussion of the issue of cure, when you say that the causes shouldn’t be looked for, and when you say a cure is impossible and shouldn’t be searched for? I wonder what documented harm there has been from “unproven” therapies. I wonder what people are supposed to do when mainstream medicine drags its feet in looking for real treatments, refuses to look deep into the etiology as they have no incentive to devise cures, and would likely lie about alternative treatment. I don’t think the condemnation of unproven therapies is genuine when the ones who condemn it also don’t even want there to be treatment, and bash even rigorously proven treatments like ABA. They even belittle dietary interventions, despite there being many indications of some autistics having possibly painful digestive problems. Just because one alternative therapy doesn’t work doesn’t mean that none of them do.
How can empowerment be done if the person isn’t granted the power to change their life or choose their conditions? The idea of empowerment is misleading when it doesn’t come with choice. I wonder what you really condone in treatment when you say you would favor it if it improved quality of life, happiness, and communication. Lots of people have a consensus about what the first two of those things are, but those with your views pretend that quality of life and happiness don’t depend on having ability. I’m not sure what you would endorse in improving communication, when some of your ideologues have implied that some should settle for facilitated communication, which by the way won’t work for all on the spectrum.
Encouraging other accessory forms of help doesn’t make it acceptable to dismiss the importance of actually improving ability. The social model of disability is senseless in most cases. Trying to preserve disability alongside any consideration of it is what I oppose. The thing is, is that people don’t like to lack ability when other people have it. It’s not all about what other people think about it. When someone else has something one doesn’t have, or can do something one cannot do, especially when it comes to the important things, the person wants what they don’t have, especially when the disparities are large. And I think that those feelings are just. I don’t believe in the retaining of conditions of inequality when there is a way out of them.
“Wouldn’t it be nice if someone spent the time and money to get you what you need to be a successful, strong person?” Yes, it would. And what I need and want is much more ability. “All of us - regardless of personal obstacles - have a valuable role to play, and we must get you what you need to empower yourself to fill that role.” What are the natures of these roles? Who does the fulfilling of all of these roles benefit, and which roles are comfortable to live with?
Well, that’s a long post, billy. I admit that I am going to have to try to filter it down a bit. I just don’t have the energy to take it all at one go.
As I read your post, you really seem convinced that there is a possible future cure for autism. We’ll have to disagree here. I believe that the cause of autism is that we are born that way because of the way our genes combine. The only genetic cure would require changing all our genes in all our cells in major fundamental ways. I was not joking when I equated this approach to curing autism with a brain transplant. I am convinced that - even if the cure were possible - it would require the complete removal of you and I.
I do not condemn treatment. I simply require treatments to provide more than giving a parent or a doctor or a politician a good feeling of false pride. Any treatment must actually help the Autistic. Especially if someone is charging money for it!
ABA may have a good effect, if it is specifically tailored to the subject, and there are no aversives involved. I’d have to see better evidence of success before I’ll feel good about the sale of something so potentially damaging. We’ll see.
The same goes for diets. I’m well aware that some Autistics respond well to a gluten-free diet. This doesn’t mean that the cure for autism is a gluten-free diet. It means that this particular individual has a dietary issue that this approach improves. It is wrong for vendors to market this as having anything to do with autism directly. And it’s wrong for people who know better to make such promises.
I put “normal” in quotes because it’s a false term. There are no normal people. There are just degrees of difference from stereotypes and templates. If your goal is to become normal, let me promise you this: there will always be someone to tell you that you haven’t made it. The word “normal” has no positive use - not even in conversation, since it’s impossible to agree on a definition. It can only be used to point out people that someone thinks are sub-standard. I believe our society needs to drop this distinction, and the implication that anyone who doesn’t match the template is inferior and disposable.
In fact, I get a strong feeling that most of your anger comes from a constant comparison between yourself and “normal.” As long as you judge to value of your life by the standards that others give you, you’ll never get where you want to go.
Yes, it’s true that some people have more abilities than others. Sometimes they have a great deal more of some sorts of abilities. But your value isn’t determined by how many abilities you have. It’s determined by what you do with the abilities you do have. If others tell you otherwise, and you believe them, then it really IS “all about what other people think.”
I agree that inequality is something we should work to remove. I disagree, however, with your basic point that autism is the cause of the inequality. I really do believe that the inequality is caused by the refusal of the majority to accept you as a fellow citizen. Period. If they were to treat you with the same deference as they do a football player with a broken ankle, they would ask you “What do you need from us to help you cope with this obstacle?” When society forms that habit, you’ll be able to take part, and contribute the products of your dreams.
What you need is not “much more ability.” What you need is far fewer obstacles. You especially need fewer obstacles put there by the heartlessness of other people.
Real neurodiversity is the insistence that people (yourself included) accept the fact that you are the way God made you, and that we all have a responsibility to help - or at least not hinder - those who have obstacles we don’t share. We are also responsible for our own attitudes toward others, and do not have the right to devalue the efforts of others.
That’s the bottom line for me. Despite what some folks imply, humans are never garbage. No matter who they are born to, or where, or how poor, or with how much “ability,” there are no wasted humans. There is God in each one, and it is just plain wrong to throw them away. Instead, we are required to do our best to bring out that Light and help it illuminate its host.
I doubt the genetic nature would preclude the possibility of a cure. I wonder what gene therapies could do. In some cases there may not be that many genes to deal with, and maybe not all involved genes would need to be dealt with. And I doubt the genes would have to be changed in all cells. And I believe there are some genetic susceptibilities to environmental exacerbations, where the toxicants could be avoided. If a treatment does what it is supposed to do, which I think is to increase ability, then of course it helped the autistic person.
The reason I mention the word normal is because I think it’s a distraction from the center of the issue. Even if some people mention normalcy, I think they’re usually using a different context, where what they mean by it is being in sufficient condition or not overly lacking in something necessary. I reject the pursuit of normalcy as the conforming to an unnecessary stereotype.
I’m not angered about not being your description of normal as compared to other people. I’m angered about the mental inequality I endure. I feel bad that I can’t fulfill the standards that others can fulfill. I don’t think this is really about my value. There are only so many things that can be done with a low amount of ability. I want the basic abilities that others have, no matter how bad or nice they treat me, and no matter what they say about me. I just wanted a decent amount of ability to experience things with for the time I’m on this earth, especially in case that this is the only existence I’ll ever have.
I don’t think there are any obstacles to remove to enable me to achieve my objectives, aside from my inability itself. I believe some things can’t be done without a certain amount of ability. Not all shortfalls in achieving objectives are due to obstacles put in place by society.
I don’t believe people should have to accept the way they are and the conditions they endure, no matter what entity is claimed to have determined them, however people shouldn’t rise to prosper more than others by not granting others what they have when such sharing is possible. I don’t like justifications of social inequality and hierarchy, which have been prevalent throughout many societies. People’s responsibility should not be to bring others sentimental roles, but to spread the prosperity that is possible. They should be responsible to the common good instead of selfish individualism. Because humans aren’t garbage or wasted, they shouldn’t have to spend their precious lives in miserable conditions or oppression.
I believe I received almost the exact email from Billy this weekend. He has been very busy. Your replies to Billy are exactly what I was going to say, except I don’t have the time because I am busy with my sons. I am trying to give them the tools they both need to be happy in life and as independent, in my autistic son’s case, as possible.
I’m no expert on autism, genetics or philanthropy. I am, however, not entirely clueless when it comes to the realm of my own experience. And I know that the greatest fear which runs like a thread through my life, has been the one of “not-being-able.”
Because of certain events in my life, and no doubt, my genetics, there are certain ‘bridges’ or pathways in my mind which, despite being indicated to me by consensus reality as information highways, are either simply not there, or have long ago been closed and never reopened.
Seeing the “ableness” of activity of others in those regards, and along those lines, become quite the source of depression for me. It really didn’t seem fair. But I honestly just got tired of camping out at the road blocks, and gave up on the maps being handed me by those who, by the way, despite using paths inaccessible to me, it turns out never actually used any other ways.
I lost interest in the aims of ability, the standards of “doing” and just began to explore the boundaries of my own neural nets. I began to think in other categories, and I soon dis-covered pathways of an altogether seperate order.
Speaking of which, let me make a jump.
For whatever reasons, modern man seems obsessed with B-movies. We no longer have an oral tradition of mythology, through which methods we had once related the dynamic forces of our own mind in the forms of gods, in a way to transmit symbolic representations of our own subconscious reflection. So we, unconsciously and no doubt, feebly, express what we can through the medium we have available.
And mostly it’s only our fears and desires that make it out; 50-ft women, body snatchers and brain eaters, axe murders, pornography and zombie flicks. At least the B-movies have something to do with our own mind, while the main-stream movies seem to exist only to titilate the already strained imagination of the malnourished masses. But the one genre of the B-movie category that fascinates me the most is that of aliens and alien technology.
Why? Because I think it has the most to do with our own relationship to our self. Instintively we are aware of a presence within, something unknown, which lurks deep within the shadows of our own mind. And what would be move ‘alien’ to our conscious mind, then our own subconscious? As for alien technology, well, we use it every day.
Each one of us is in possession of the most powerful super computer ever created, or at least, the most dynamic. Like those stumbling apes, however, we find one or two buttons that, although quite powerful, are neither the purpose nor the limits of the machine. This mind we have is alien technology in so far as how we use it, and how much we know about it.
And when that gets boring, who is using this mind? Perhaps, that question itself can awaken the true potential this technology keeps well-hidden.
So all I’m saying is this: ‘ability’ can only refer to one thing alone, and that has to do with our determination to understand who and what we are, regardless of who or what created us, regardless of what we host, and regardless of what it seems that everyone around us is up to. All external signs of ability are coincidental, and ultimately inconsequential.
Don’t you think?
Well, coming up with answers to such interesting questions and fulfilling currently unknown purposes and limits, don’t seem like things that can be extensively done when so many people can only have such limited experiences of and influences on reality. Even if some people could lead such tasks about limits and purposes, I think to enable all people to act on such endeavors to experience results, they would need to be ready with some access to ability, and with overall societal conditions that would be conducive to such results.
I agree with you completely on that, Billy. We need better societal conditions which strive to engender what makes us each unique. Yes. So much comes back to proper education.