NTs Are Weird

NTs Are Weird
An Autistic’s View of the World
(click here for explanation of title)

Respect and Politeness

February 17th, 2009

I guess if you hang around a bad crowd too long, things rub off on you.

I’m seeing that happening among the autistic advocacy blogosphere.

Seriously people: We need to treat each other with respect. Just because the other guy doesn’t, it doesn’t mean that our message is more likely to sway people if we are jerks too.

Seriously.

And don’t respond by telling me that autistic people are blunt. I know that. But there is a difference between blunt and jerk.

Why does it matter? Well not because we’ll sway the jerks on the other side. Instead, we need to be decent to people because when we aren’t - even when it is our “enemies” that we aren’t decent to - our legitimate opinions get dismissed by people who aren’t in the fight (a much larger number than those in it).

So, please, some respect here.

It’s not about money

February 15th, 2009

I think there are several areas where advocates get off-track with autistic advocacy.  I’ve written about one many times - the anti-anti-vaccine focus to the exclusion of other topics (it’s sad to me when someone who overtly attacks disabled or autistic people is a member of the “autistic advocacy” community simply because they agree with our community on vaccines not being the source of autism - it seems like we’re fousing on the minor points, not the major ones).  Civil rights is where, in this autistic’s view, attention needs to be paid.

Yet civil rights are often ignored.  I think there are several reasons for that, but the primary one is that autistic people are the only major stake holder in support of civil rights for autistic people.  I’m not saying others don’t support our cause - they do - but as a cohesive “thing”, autistic people are fairly alone when it comes to civil rights.

Schools and governments - the main areas where advocacy is occurring - are not trying to further civil rights.  They may be trying to further public health, education, or, most importantly money.  And for too long, they’ve been determining the context upon which the conversation about autistic civil rights must take place.  That needs to stop.

An example of this “context is everything” is in the area of education.  Ask an educational commission, legislature, or school board about why autistic people are denied basic civil rights (the right to communicate, the right to inclusion, the right to be safe from abuse, etc) - and you will hear one answer: We don’t have the money.

It’s strange, though, because no other civil rights battle is focused on needing money to respect someone’s rights, even when respecting those rights does have a financial cost.  No other battle has so-called supporters claiming that they would respect our rights if we paid them enough.

Some of the battle is a side-battle that is completely irrelevant.  Does the State or the Feds pay for special education?  Frankly, who cares?  Other than the States (trying to get the feds to pay, so they don’t have to raise State taxes) and the feds (who want to get the states to pay so they don’t have to raise federal taxes), truly it doesn’t matter.  But it is important to those who are dealing with education finance all day, so other debates get hijacked - and parents and others get, almost, threats.  Get the (state or feds, pick one) to pay for this, or else we’re going to do the wrong thing (yes, I know this is a US-centric paragraph, no need to remind me - substitute the appropriate side-battle for your country).

We need to get the conversation turned back to civil rights.  Schools spend a substantial part of their day (probably more than any formal subject) teaching about other people’s rights.  Seriously.  “Don’t throw scissors?”  “Don’t hit her.”  “Wait your turn.”  “Everyone needs to be quiet when someone else is talking.”  Because they spend a huge part of their day on this, that means also a huge amount of money.  Yet it is seen as essential - how could you teach ANYTHING without teaching these things?  You couldn’t.

There are other areas of civil rights which aren’t necessarily funded.  Schools in a high-crime area may have additional security requirements that other schools don’t.  But not placing these security measures in place will reduce the ability of students to learn - and penalize some students for no reason other than they happen to live in the “wrong” neighborhood.

In the US, we also pay to bus students to class.  I know some students who would ride the bus for 2 or 3 HOURS each day, in rural parts of the United States (the other option is even more expensive single-room schools).  Often times, they rode in a gas-inefficient school bus (6-7 MPG is not unusual) with a handful of other students.  Yet, it was considered the responsibility of government to provide education for all students in the country, even ones that happened to live far away from school.  It was considered a responsibility, even though these students cost many times more (think bus purchase cost, driver pay/training/benefits/support, bus maintenance, gas, insurance) to educate than people who lived two blocks from the school.  But without bussing these students, there would be no school for them to go to - and they have a right to education, despite their parents living literally in the middle of nowhere (I also suspect the cost to bus one of these students per year was more than the cost of most communication devices).

In other areas, we also see the need for education, even when it costs money - such as schools that may have to teach the child of an immigrant, who may not yet know English.

That’s why we need to get this turned back to “It’s not about who pays, it’s about civil rights.”  When schools press that they could educate however many “normal” students for the cost of one “special” student, it’s time to ask, “So, what makes educating normal students more important?  It it only numbers?  If so, let’s stop educating in rural areas and bad neighborhoods.”  There is an underlying principle here: We have to educate students - ALL students, not just the inexpensive ones.

Yes, States, the Feds, schools, and local communities should pay for this, too - JUST LIKE THEY DO FOR INEXPENSIVE STUDENTS!  And we should lobby for this.  But when one of these communities tries to balk and say that the money shouldn’t come from their own pocket, it’s time to call them on that.  This isn’t something that each funding source can simply toss over the wall, nor is it something that they can say “We can sacrifice these students for the good of normal students.”

I know I can hear people saying “We just don’t have the money.”  Well, perhaps we would have that money if we would pick the X number of students that one special-ed kid’s education would pay for, and then NOT educate those X students.  They probably are important enough to fund - by every funding body.

(Added the following after posting): One more thing, it shouldn’t have taken a mandate, funded or otherwise, for schools to support the civil rights of all students.  I guess that’s my concern about the “unfunded mandate” argument, when applied to special education - they should have been doing it long before the mandate.

Two Myths about Autistics

February 2nd, 2009

When it comes to suffering, or at least to those who suffer, autistics are hardly unique. There are two myths that commonly get attached to those who suffer:

1. If someone else isn’t actively indicating that they are suffering, their suffering isn’t “deep”.

2. If someone is actively indicating they are suffering, they are just “whining”.

I see both of these among autistics (and others who suffer) very frequently. Both have an interesting premise behind them: “Their suffering isn’t deep or real.” Note that this isn’t the conclusion, but the premise - these two statements would not make sense without accepting that premise.

The reality is that different people respond to suffering, pain, and other negative things differently. I’m not a “you create your own reality” type of person, so I’m not going to say this is because of poor or good self-image, positive/negative thinking, or anything like that - I believe these terms (and others like them) are used to abuse people who are already suffering, by making people think suffering is their own fault - when often it is not..

But people do respond differently to different situations. There are literally millions of reasons for this (it’s actually similar to sensory perception in a way - a sound I crave very well may be a sound that is painful to another, but it doesn’t change the nature of the sound, nor make it either person’s “choice” or “fault”). But someone who responds to suffering in a quiet way is simply responding in a quiet way. That doesn’t negate their suffering.

I do wish that I didn’t have to scream at the dentist, in what feels to me like a gross overreaction to pain. But I do. If I don’t, no other form of communication I’ve found seems to be appropriate as far as the dentist is concerned - I must not “really” be in pain if I’m not screaming. We shouldn’t have to play these games! We should have a right to having others take our suffering seriously without the need for “acting”.

Likewise, something someone thinks is minor might elicit a huge reaction from me - not one of “acting”, but a real, genuine, and obvious reaction. Rather than arguing about whether or not my reaction is “appropriate” or “overreaction”, why not try to help? Why not try to see what bothered me enough to make that reaction, before simply dismissing my reaction as inappropriate or too big?

I believe that understanding this is a key to interacting with autistic people. Just because I don’t show suffering in an “appropriate” way does not change the nature of my suffering. It is amazing the number of anctedotes about autistic people “overreacting” but later to be discovered to have incredible suffering, such as a broken bone, toothache, or other “legitimate” problem. Perhaps it would be wiser to just accept that when someone shows signs of suffering that something is wrong!

Likewise, I can’t judge the effect of something on someone else on the basis of my own reaction. Something that causes great pain or grief in me may be something that is trivial to someone else - and vise-versa. That doesn’t invalidate anyone’s pain, it simply means that we are different.

So, if you see someone suffering, just try to give them the benefit of the doubt that they just may have a reason for it - before you assume it is overreacting. And, likewise, don’t assume tht suffering isn’t there just because someone doesn’t respond in the “typical” manner.

Negative Definitions

January 10th, 2009

I’ve not been writing much, due to moving and taking a new job - but I’m getting settled again now, so it was time for another blog.

I’ve observed the autistic community (like so many other communities) continually defining themselves by what they aren’t. Right now, the popular thing to be “not” is “biomed” - and you can see this online in blog postings and mailing lists populated with autistic people.

Before biomed, there was Applied Behavioral Analysis (ABA) to be “not”. You weren’t supporting autistic advocacy if you weren’t anti-ABA. Unfortunately, you didn’t even really have to know what ABA was, you just had to be against it.

Before that, others tried defining autistic rights (as distinct from autistic community) as “anti-refrigerator mothers theory” or anti-secretin.

You can trace the history of the autism advocacy movement - and the birth of entire organizations - by what they were fighting against at the time of their creation.

There’s a problem with this - it creates a single, overriding issue that is treated as a litmus test for orthodoxy, while ignoring other, equally-valid issues. Right now, if you are against “biomed”, you are “pro-autistic”, at least in the eyes of many.

Now, I share the views that Secretin is useless to “cure” autism, refrigerator mothers don’t cause autism, the things being sold as “biomed” for autism are harmful, and ABA is unethical. But, too often these things (and many others), become a single issue that we focus on at the exclusion of all other issues.

We need to remember there are issues other than the popular ones. We also need to remember that sometimes we have to be *for* something, not just against something, if we want people to change.

Rapist Released to “Care” for Victim

December 3rd, 2008

From a mailing list I’m on, ICAD, I’m forwarding the following to my blog so it gets attention:

Tens of thousands of Koreans are protesting the suspended sentences of four men convicted of repeatedly raping a young girl with intellectual disabilities. Protesters are calling for impeachment of the judge. The victim, now 16-year-old was repeatedly raped by her grandfather and three of her uncles over a period of many years from when she was a young child in a case police described as gruesome.

The Judge in this case suggested that suspended sentences were appropriate so that these men could continue to provide care for their victim.

It is important that international attention is focused on this case as the prosecutor attempts to appeal these sentences.

1. Please consider letting others know about this case. More info can be found at

http://icad.wordpress.com/2008/12/01/korean-outrage/

and

http://icad.wordpress.com/2008/12/03/thousands-protest-rapists-probation/

2. Please consider responding to the icad poll on sentencing in this case and asking anyone who cares about the abuse of people with disabilities to do the same by going to

Suspended Sentences Poll
http://icad.wordpress.com/

Thanks for considering this request.

Diversity - A New Paradigm

December 1st, 2008

One of the most frustrating things to me is the “black and white” diversity policy. Many organizations (including disability-related organizations) have formal diversity policies, applied in a very strict way. These are diversity-lite policies.

They will typically list 5, 10, or maybe 50 different characteristics that might apply to people. “We don’t discriminate against race, sex, age, or religion.” So, do they discriminate against nationality? How about disability? What about sexual orientation? How about political party affiliation? That’s the first problem with these policies - they always leave people out, no matter how inclusive they try to be. A truly inclusive policy cannot limit applicability to specific categories of discrimination. There’s the additional problem: Some policies say they don’t discriminate against, say, disabled people, yet require disabled people to be medicalized. The question often seems to be “Do we treat a population of people as likely freeloaders trying to get an undeserved handouts?” If the organization does, I guess it does make sense to have medical gatekeepers to validate the disability…

The second problem - just as large - is one where the remedies or accommodations are fixed and have complex “gateway” requirements. In some places - higher education for example - strict adherence to law (typically the ADA in the US) has created a very inflexible, unaccomodating atmosphere for some (please note that I very much support the ADA and recognize all that it has done, so don’t read more into this than is here). Rather than giving staff the authority to grant accommodation, even trivial accommodations or remedies have to go to the “central authority” to decide what is and isn’t okay for accommodation. The reason given is “fairness” - ensuring that nobody gets an accommodation that isn’t “legit”, and that everyone is treated fairly. Ironically, most places with formal policies that follow this model don’t trust their staffs (or faculties, in the case of universities) to be fair and aware of disability (or other diversity) issues, but rather imply that equal access is apparently something only a few can understand. I think that is probably the most damning part of these policies.

There is another model, though - one that doesn’t have, at the core, the idea that a central authority must grant remedy and accommodation. There is another model that doesn’t worry about whether or not someone independently granting remedy or accommodation is going to “open the floodgates” for “those types of people” (perhaps the ones intentionally excluded from diversity policies).

It’s a simple model: Keep the “central authority” to grant or deny diversity requests - but change their role in the politics of the organization. First, grant everyone in the company the ability to grant (but *not* deny) diversity requests that fall into their sphere of influence at the organization. That means, at a university, a professor can use his judgement to decide that a student does in fact need class materials provided in a format a blind student can read, such as electronically, based on input from the blind student - there’s no reason to require formal documentation of blindness, personal educational plans, or any such nonsense in response to the vast majority of accessibility requests - the need is obvious, the accommodation minor, and the threat to society as a whole is non-existent (other than allowing people to feel and be accepted, which, granted, is a big deal).

When there is an accommodation that doesn’t make sense to someone, or seems extreme (as will occasionally happen, but much more rarely than people who support the status-quo think), such as a potential employee suggesting he be hired only on the basis of his diversity status, that request should be passed up to the central authority. Only they should be able to deny a request, and only after very careful consideration. (note that I am not commenting on affirmative action - no affirmative action supporter believes that diversity status should be the only factor in being hired, and I’m not saying whether I’m for or against this; it sucks to have to disclaim everything I write, but I’ve learned from experience…ah, never mind my whining…)

But it is not just worrying about denying requests - the main focus of that central authority isn’t to decide what is and isn’t okay as an accommodation - rather, it is to gather information from the organization on inclusion and disseminate that information to the organization. They should be an advocate for people who are facing prejudice or discrimination, a part of the organization that will actually support diversity, not the organization’s structure (that differs from how most “central authorities” are currently arranged - keeping the organization’s structure from facing liability seems to be the main point today).

They should track and investigate incidents where diversity is not valued in the organization. And they should have the authority to deal with problems and when found.

Finally, they should encourage, not discourage, new diversity and new ways of supporting diversity. Rather than fear that some employee somewhere in the organization will take it upon himself to promote diversity in a new and unique way, they should be encouraging and actively rewarding this type of activity. So no longer do all requests have to go through the central authority - people doing the work of the organization are allowed, and in fact expected, to support a diverse organization.

I’ve worked for many wonderful organizations. Many do these things already - although, sadly, much of the time a supervisor granting even a trivial accommodation or remedy is violating company policy - and faces the risk of discipline simply for doing the right thing without being told to do that. To me, an organization that truly supports diversity would expect its supervisors to actively support company goals, including diversity - not just accept passive roles. Other organizations - with no diversity policy at all (typically small employers) have been exceedingly flexible, responding to my requests and needs without medicalizing or requiring proof. Perhaps they didn’t “know any better”, but to me, it is a whole lot more supportive for a request to use a pencil on some forms to be granted immediately than to require me to document my disability and seek a medical opinion on whether or not using a pen or pencil is easier for me. Supportive organizations don’t think I have a sinister reason for such a request!

Maybe one day we’ll see this as a “best practice” for organizations - support diversity at all levels, and empower all employees to be supporters of diversity.

When did respect for life become political?

November 25th, 2008

Last week, I attended a service for the Transgender Day of Remembrance. The day of remembrance is a time when people remember people who were killed because their expression of gender wasn’t “right” in someone else’s eyes.

As I participated in this event, I wondered, “Why is it that this event is not well known and not attended by members of nearly every social, religious, and civic organization? Can’t we agree that murder is a horrible thing?” There were many people from many walks of life there, but there were also large segments notably missing.

It’s clear that there is a political component at play. In this area, the political component is simply that some people find the idea of homosexuality repulsive, and thus can’t even associate with an event designed to remember that people who did no wrong to anyone else were killed simply for being different.

Of course, when people are asked, “Why would your church or civic organization not attend?” you are met with responses along the lines of, “We can’t support homosexuality”. In other words, the idea that homosexuality is sin is too important to “protect” (sound like the marriage debate?) that showing opposition to murder is politically harmful in many people’s eyes.

This doesn’t surprise me completely - I’ve seen similar trends in autism, although with entirely different motivations (not moral or religious, but rather political views on support services). Too often, I’ve received hate mail about my site because I point out that murderers of autistic people should face the same criminal penalties as murderers of non-autistic people. I am told about the hard life the murderer had, and how raising an autistic kid (yes, kid - despite the fact that not every autistic that is murdered is a kid) can push someone to the edge, and that these murders aren’t a time to cry for equal treatment under the law, but rather a time to petition government about support needs (I’ll also note that this clearly doesn’t apply to murders where, for instance, an autistic walking down the street is murdered by strangers just because he is different).

Well, yep, we do need better support for autistic people and our families. I’ve never disagreed on that. But it doesn’t justify murder, nor should it keep people from making a strong statement against murder.

Respect for life isn’t political, or at least it shouldn’t be. Whether the person has the “wrong” expression of gender, is autistic with unsupported parents, or whatever else, politics shouldn’t make murder okay. We shouldn’t be mixing respect for life with politics.

Regardless of politics, I’ll remember the people murdered out of hatred. I’ll remember the 31 people murdered in the last year because of hatred for how they expressed their gender. The world has lost much with these murders.

Wonderful Answer

November 17th, 2008

A few days ago, I asked my girlfriend to marry me.

She said “Yes!”

I am sure that makes me the happiest man on the planet!

Card Games

November 10th, 2008

A while ago, a commenter on this blog asked about ways of making touch more bearable in an romantic relationship. As autistic people, we are often sensitive to all sorts of sensory input - including touch. Some touches are downright painful, invasive, or otherwise unpleasant. We also have a higher likelihood of having faced abuse, memories of which can be triggered by even the most special person in the world touching us in the wrong way - and it may not be obvious to them that it would be a wrong way.

My amazingly creative (and romantic!) girlfriend - who shares many touch issues with me - came up with a wonderful way to get around this problem - to retain some control over how you will be touched, and to have the confidence that the touch of your partner won’t be unwanted touch. At the same time, she felt (as do I) that romantic touch isn’t as fun if everyone knows exactly what will happen next - some surprise can be enjoyable.

Her method was simple - both her and I made up a deck of cards, with short descriptions of a kind of touch we’d enjoy on them. We kept these decks separately, and exchanged them with each other when we decided we wanted to enjoy some touch with each other. When you receive the deck, you draw a random card, look at it (you don’t look until then), and, without showing your partner, do whatever the card says.

For example, you might draw a card that says, “Gently stroke my hair”. So, without letting your partner know what you are doing (but they know you are going to do something they like), you are able to touch your partner - and your partner knows that whatever you do is going to be something safe, which is important for many people, such as abuse survivors. You are doing something your partner has explicitly said is safe.

Of course the rules can be changed, and the cards can be as mild or wild as you and your partner want, and it is a wonderful way to find out about touch that your partner enjoys - without having to go through a bunch of touch isn’t enjoyable. Yet, it is almost a guarantee that you won’t touch in exactly the same way as your partner expects - just very close, and still safe, but slightly different still. So it keeps some of the spontaneity in the relationship.

This also lets each person learn about ways the other likes to be touched, for times when the cards aren’t in use.

Along with all of this, the cards don’t have to be limited to touch, either. They can include things such as, “Tell me about what you like about me” or other similar types of questions - of course when your partner starts telling you about how your hair is beautiful, you don’t know for sure if it was an answer to that card or something else.

We’ve also found that coming back to cards that were written months earlier is a lot of fun - you don’t necessarily remember what you wrote, so you might not have any idea what your partner is going to do when she reaches for your hand.

Of course the NT readers here are welcome to use this idea too - it is a neat way of adding a little spark into the relationship. Just because it helps autistic people overcome some of our difficulties doesn’t mean it isn’t a lot of fun!

I wish all disability accommodations were this much fun!

I’m not “Anti-Ally”

November 9th, 2008

A few years ago, I wrote publicly, in several places, about how leadership of the autistic rights movement needs to rest in the hands of autistic people. I was called many things, including egotistical and “anti-ally” by non-autistic people who felt that they were working for the good of autistic people. For this reason, I’ve been holding back on saying these things - but I think I’m strong enough to handle those who will be angered by this idea now.

I can make this simple: You aren’t working for our good if you, as a non-autistic person, have to have authority in the movement. Period.

I’m not talking about formal positions, titles, and command structure. Nor am I saying you shouldn’t do great things to further the autistic rights movement (please do!). But I am asking: “How do you figure out if your advocacy is ‘good’ or ‘bad’ advocacy?” If the answer is anything other than, “I respect the self-determination of the people I’m advocating for, and will let them make that call,” then you are supporting something other than self-determination for autistic people. Someone who does that is no ally of mine.

This isn’t egotistical. You don’t have to listen to me - there are plenty of other autistics around, some of whom disagree with me on a whole lot of things. But do look towards autistic people, and do make an effort to find out where there is widespread agreement among ourselves.

Phil Schwartz wrote a lot about what being an ally is about - see Identifying, Empowering and Educating Allies, which Phil wrote. Particularly, pay attention to the section that is titled “Characteristics of Good Allies.”

For the many, many good allies out there: Thank you. We can’t win the fight for autistic rights without your help, and I recognize that. I hope some other discriminated-against groups consider me an ally, and I recognize that it isn’t always easy to fight against the status-quo, even when you are not the primary target of discrimination. I thank you for recognizing the truth in the South African freedom movement slogan, “Nothing about us without us.” To others, non-autistics who require a say in setting direction for me and others like me: I will continue to fight against the idea that any outsider knows what is best for “those people”.

[edit: One more clarification/disclaimer: Speaking publicly about the problems autistics face is not the same as requiring authority in the movement. I am not intending this post to be a comment that other bloggers shouldn’t continue writing and even seek a better platform to speak from, even if they are non-autistic]

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