NTs Are Weird

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.

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.

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.

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!

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!

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]

I’m not exactly sure what to call this “condition”, but “Post-Discovery Depression” seemed as clear as anything else I could think of (that is, not very).

I’ve experienced, as have most other adult autistics I know. Basically, the discovery process, where a person learns that he is autistic, is almost always followed by fairly severe depression.

I don’t know exactly why that is, but I do have some theories, and I also know a few things it is not. First, it is not a result of feeling bad about being autistic - this happens to plenty of people who have a positive outlook on autism.

It may be that, for the first time in someone’s life, they have the “answer” to “life, the universe, and everything.” Autism explains how they got to where they are in life, and why some things have been so incredibly difficult. But, as time goes on, the all-encompassing explanation begins to get a bit weaker - it doesn’t explain everything, just a lot of things. What it explains seems to shrink as time goes on. This means that problems unrelated to autism - and thus not easily explainable - begin to be seen. And this happens even when someone didn’t seek diagnosis due to difficulties in life.

Even more significantly, having the answer to “why” doesn’t provide an answer to the question, “What now?” Sure, it’s part of the answer to the “what now” question, but it certainly isn’t anywhere near enough on it’s own. Yet, as time goes on, and the practical demands of living still exist, even a few weeks/months/years after diagnosis, often with little hope of short-to-medium-term improvement, discouragement and then depression come into the person’s life.

Of course none of this is exactly scientific - I can’t cite studies or research on this, and frankly don’t even know if the studies or research exists. But it is certainly worth some investigation if the research doesn’t exist - are my observations accurate, is depression more common shortly after diagnosis? Or am I seeing something that isn’t there?

Despite being a bit sick, I just returned from the polls. One of the nice things about Wyoming is that typically we have our act together when it comes to voting - no lines, easy to manage voting technologies, and the all-important voter-verifiable paper trail.

I encourage all the adults in the US to go vote today - it is an important right.

I watched an online dialog between an autistic advocate and a parent the other day. The conversation started with basic questions, such as “What interventions help?” from the parent. I don’t know that this was ever answered by the advocate, but the parent certainly heard a lot about people in the anti-vax movement. My perception is that the parent had no idea who these people were or why there was such hatred directed towards them.

I’ve seen this on both sides of the “does mercury cause autism” debate - strong believers on both sides seem to think that the entire world is wrapped up in this debate, that it is seriously being argued among the masses, not just a few interested people. Well, it’s not. It’s getting argued about as much by the masses as Aluminum and Alzheimer’s causation. In other words, quite a few people have heard the theory, but not many people are eliminating aluminum foil from their house. We see the same thing with vaccines. More significantly, most people have no idea who the players are in either the aluminum or mercury debates!

For most people in the world, these debates are not the most important issue - it’s more of a side show than anything. Yet, it gets treated (by both sides) as if it is the central issue that needs to be addressed to keep society from falling apart. It’s not.

Now, am I saying that this shouldn’t be talked about? Of course not - it should be. (Lest anyone think a post without a disclaimer supports mercury causation, let me also be clear: I recognize the theory as bogus and “mercury induced autism” to be 100% quackery) I am saying that when we’re pushing our case, perhaps we should remember that most of the world has no idea who the Greirs are, what an omnibus is, or even what chelation is. If you see the person you are talking to start to lose interest, you might simply say, “The idea that mercury causes autism came from a bunch of greedy quacks” and move on - maybe talk about who won the World Cup or something.

Today, I am thinking about the most beautiful and wonderful woman in the world, a very nice thought indeed! We’ve been going out a year now - the best year of my life!

I love you Alauda!