Author Archives: Mel Baggs

About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.
Nov27

An Antidote to X-ing

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This is intended for the Disability Blog Carnival. The topic this month is, “I am.” The carnival is posted at Emma’s blog.

I’ve posted many things like this before, but I don’t know where they are, so I’m writing it over again in slightly different form. A little repetition of this concept never hurt anyone anyway. :-)

(See this entry by Anne for a better description of X-ing than I could ever hope to write at the moment, as well as a broader description of what I am talking about in this post.)

An Antidote to X-ing

It is not arrogant, stupid, foolish, bad, meaningless, or wrong to say that you exist.

There can be a lot of very strange patterns in the rest of the world, some of them involving people, some of them not, some of them seeming to come from inside of you, all of them basically boiling down to the message, “You do not exist,” in one form or another.

Especially if your existence is not something some people want to know about.

Especially if you are in one form or another dissenting from the views of seemingly very powerful people.

Especially if you are accustomed to taking people at their word, even when their word is, “You do not exist.”

Especially if you have been trained to endlessly repeat that mantra for them. (You may even have been taught to repeat it to others, and thus, for each moment you do that, go through the motions of that same destructive pattern.)

Especially if you have been taught that reality (especially the piece of it you inhabit) is upside-down, inside-out, and backwards from what it is.

Especially if you have been taught that existence is unimportant.

Especially if you don’t fit some usual pattern of existence that most people are looking for.

Especially if you have been led to believe that existence is only for people something-er than you. Cooler, smarter, better, stronger, whatever. That for the little piece of reality you are to exist without apology or shame, is arrogant or uppity.

Especially if you have been led to believe that to exist, you have to do, or understand, something complicated, something abstract, some grand and enormous theory about the world.

Especially if you have been trained to be the plaything of people who think that power consists of deluding themselves into believing they’re warping existence to fit their egos.

Especially if you have been trained to ask permission, and apologize, for something as simple as breathing.

Especially if you have been trained to view an assortment of superficial traits as who you are, by people who for whatever reason believe that themselves.

Especially if you have been taught that you have to know who you are, to say that you are.

Especially if you have been taught that existence has to come in a package of intellectually rigorous words all lined up in rows and stuffed into endless books to be devoured by an elite who have access to them.

Especially if you have been taught that existence is some other kind of secret, rather than something that is going on around all of us, all the time.

Especially if you have been taught that asserting your existence is somehow the same thing as the hubris in claiming that the flimsy imaginings of a vain ego are important and real and central.

Especially if your existence is one of those frequently deemed worthless, inferior, defective, and overly expensive.

These things can seem to weave a complicated web around you, and that can seem to control you, distract you, make your mind run in useless circles every time you come close to the idea of existing.

That can seem very complicated indeed.

But one thing, is very simple.

You don’t have to even think it, if even the thought of your own existence triggers some cascade of misdirection.

But it’s there.

It’s always there.

And that fact can’t be taken away.

It’s a very simple fact.

But simplicity is a strength here, not a weakness.

This fact is very powerful.

It unravels all that complex nonsense and shows it for what it is (even with all the complex nonsense in the world trying to claim otherwise).

It’s simpler than even the two words used to describe it.

That fact is:

“I exist.”

Without that, all the ideology in the world will be useless at best, and backfire at worst, becoming part of that strange pattern of destruction.

The more we are told not to exist, or that we don’t exist, then the more we need to assert our existence.

Not necessarily in words.

Not necessarily in ways that everyone would understand.

But certainly in ways that are active and meaningful, and going on from there.

I exist.

Oct11

People can be a bit like water.

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(I wrote large parts of this post while unable to read, so I apologize for any areas I might have left unfinished or confusing.)

I was talking to a friend recently, who was confused about why it was that people encouraged her to become more assertive, and yet became angry when she actually was more assertive and it conflicted with their wishes.

Which reminded me both of a lot of my own experiences, and of one of my favorite passages from the first Harry Potter book:

Neville stared at their guilty faces.

“You’re going out again,” he said.

“No, no, no,” said Hermione. “No, we’re not. Why don’t you go to bed, Neville?”

Harry looked at the grandfather clock by the door. They couldn’t afford to waste any more time, Snape might even now be playing Fluffy to sleep.

“You can’t go out,” said Neville. “you’ll be caught again, Gryffindor will be in even more trouble.”

“You don’t understand,” said Harry. “this is important.”

But Neville was clearly steeling himself to do something desperate.

“I won’t let you do it,” he said, hurrying to stand in front of the portrait hole. “I’ll — I’ll fight you!”

“Neville,” Ron exploded, “get away from that hole and don’t be an idiot –”

“Don’t you call me an idiot!” said Nevile. “I don’t think you should be breaking any more rules! And you’re the one who told me to stand up to people!”

“Yes, but not to us,” said Ron in exasperation.

Anyway, what I said in response was that people seemed to be a lot like water. Water spreads out to take up whatever space the container it is in allows it to take. People, also, seem to spread out in a similar way in terms of what actions they view as okay for them to be doing. And they rarely notice all the space they are taking up, until some person or event makes it clear to them. It just feels ‘natural’ to take up as much space as they’re allowed.

So Ron Weasley sees Neville being bullied by Draco Malfoy. And he sees this isn’t good for Neville, so he encourages Neville to stand up for himself and stop being a doormat.

At that point in time, though, Ron is not even imagining all the things he himself does, that Neville might object to. The space that all his actions take up, and their effect on Neville, and Neville’s possible opinions of them, are totally invisible to him. So he is not even thinking about that when he tells Neville to grow some backbone and stand up to people more. He is thinking only of the actions of other people. He is outside of those actions, and therefore more readily able to see their effects on other people. It’s much harder to see those effects of your own actions.

So Ron is used to taking up a certain amount of space with his actions, and to Neville not resisting in any way. When Neville does resist, and relates it back to Ron’s encouragement to assert himself, Ron is totally surprised and not at all pleased. Aside from the urgency of Ron’s actions at that point in time, Neville is now forcing him not to take up all the space he’s accustomed to taking up.

Neville is later awarded points by the headmaster for what he did there:

“There are all kinds of courage,” said Dumbledore, smiling. “It takes a great deal of bravery to stand up to our enemies, but just as much to stand up to our friends. I therefore award ten points to Mr. Neville Longbottom.

And that is why Neville was one of my favorite Harry Potter characters from the first book onward.

Anyway, the fact that people take up so much space without being aware of it, is also apparent in how people handle power relationships in general. And it explains a good deal of the seemingly bizarre effects of people with less power or privilege in a certain area standing up to people with more when demanding equality and justice. It’s pretty often that the people with more privilege in whatever area is being discussed, are completely nonplussed and view demands for equality as actual attacks on whatever group of people have more power in general.

I wrote about this in an old post, What Happens When You Ignore Power Relationships. It was regarding a psychologist’s review of Irit Shimrat’s book Call Me Crazy. In the book, Shimrat had talked about many genuine abuses of power in the psychiatric system. Things like solitary confinement, torture, forced drugging, degradation, humiliation, and in general being treated like a lower caste of humanity. Things that are human rights violations by just about any standard.

Sheila Bienenfeld, the psychologist reviewing the book, said:

As a psychologist who for several years (eons ago) worked in a psychiatric hospital, I had some trouble with this seeming wholesale dismissal of psychology and allied professions. It was a bit of an injury to my professional narcissism. But one of the motifs of Call Me Crazy is that Shimrat and many of her fellow “survivors” feel that in their times of personal crisis they were treated by psychiatrists and psychologists, social workers and nurses, as incompetent or simply bad: their value as human beings was derided and their opinions dismissed. My feeling of being discounted and unfairly stigmatized in this book parallels what Shimrat and her colleagues often felt as patients.

The emphasis in bold is my own. Bienenfield is used to taking up a certain amount of space, at the clear expense of psychiatric patients. When Shimrat pushes back in attempting to regain her humanity, Bienenfield makes the ludicrous assumption that her experience of having her feelings hurt (as well as having it asserted that she as a professional ought not to be allowed to take up space at the expense of the human rights of psych patients) is equivalent in any way to Shimrat’s experience of captivity, degradation, and torture.

As I wrote in my last post at the time:

Am I to assume then, that Irit Shimrat and her co-authors locked Dr. Bienenfeld in a small room and would not let her out until she renounced her profession? Did they put her in a building where her every movement, statement, and feeling was noted and controlled by anti-psychiatry activists who repeatedly put pressure on her to stop practicing? Is she unable to practice her preferred profession or even state it openly for fear of housing, educational, and job discrimination? Do the police watch her more carefully when they find out that she is a psychology professor?

Are there a constant stream of articles in “reputable” newspapers that imply that violent criminals tend to be psychology professors? Does Bienenfeld lack any sort of standard recourse when Shimrat publishes her views on people like Bienenfeld? Does Bienenfeld have to worry, when she publishes opinions like this in a book review, that people will not take her seriously anymore, and may even discriminate against her?

Would it be possible for most people to truthfully relegate Bienenfeld’s views to a relic of the seventies (even though they’re being expressed in the nineties) and totally dismiss what she has to say on that basis? Is psychology treated like a joke by people with the real power? Would Bienenfeld have to struggle to get a book published about her views on psychology and keep it in print? Would it be close to the only psychology book out there, and then fade into obscurity almost as soon as it was published? Does she have to constantly have to remind people she’s not a cult member?

Those are the things the reviewer is blissfully unaware of when she equates the fact that she is being asked to do a few things differently in order to avoid hurting others (that is, the space she’s unfairly taken up in the past is being pointed out to her), with all the experiences above that Shimrat and those like her actually have had because of people just like the reviewer.

But, as I noted to my friend, I’ve been on the other side of this one too, and when you are, you really can’t always see at the time how ridiculous you’re being. Unfortunately I can’t recall all the details. But I remember at some point realizing that some viewpoint that I had held, and acted upon, for quite some time, was part of a racist pattern that had severe negative effects on other people. Nobody told me directly. I figured it out while reading a book by women of color. But I realized that my attitude, and actions, had directly and indirectly harmed people, and would have to change.

My first reaction, though, was not “Oh good, I’m glad I know this so that I can change it.” My first reaction was more on the order of, “Oh come on. I’ve been doing this the same way most of my life. Who does anyone think they are to tell me to do it any different? There’s a significant chunk of the space I’m taking up that people are telling me is harmful to them and that I need to stop doing. But I’ve always taken up that space, I’m used to taking up that space, I want to take up that space, and they are encroaching on my right to do whatever I want, if they say otherwise.”

Fortunately my conscience stepped in at some point to intervene, because my first reaction was harmful, counterproductive, and racist in itself. It was basically saying “As a white person, who racially is pretty much always at the top of a power hierarchy, who is allowed to take up way more space in that area than just about any other kind of person, then I’d rather throw a hissy-fit about my ‘right’ to take up space that belongs to others (and to cause significant harm to them in doing so, even if it just feels like a “little thing” to me), than give up a tiny portion of that space so that other people can take up their own space in the world without fear of certain consequences. And even though it would not harm me at all to just stop doing this, I’m going to act like it does, even though my doing this causes actual tangible harm to other people. Since it has little effect on me, it must have little effect on everyone else.”

The reason I’m going into great detail about it is not to justify it. It’s unjustifiable. It’s because just about everyone has this reaction about something, given that just about everyone has some degree of unfair power in some area. Just about everyone takes up some degree of undeserved space in a way that harms other people and encroaches on their own space. And it seems like an unfortunate fact of human nature to notice when other people do things like this, but to have trouble seeing it in ourselves. This happens in personal relationships, but it also happens in wider contexts involving institutionalized power.

Unfortunately, our society has tended to equate terms like racism with Nazis or KKK members, and therefore people equate it with “calling people a monster”. But it has nothing to do with being a monster. It has to do with being a member of a society that (yes, still) puts some people at an unfair advantage because of the color of their skin, the shape of their body, or the country many of their ancestors come from. And being immersed in that as someone with that advantage is like being a fish in water, you don’t notice it all around you, and you don’t notice when you’re acting on things you ought not to be acting on.

Like the time I explained, politely I thought, to a parent, that describing a developmentally disabled child as not becoming a real adult contributed to widespread harm of disabled people. I explained about the ‘eternal child’ stereotype, and the problems it has caused for many disabled people: Being denied the right to marry, live on our own, have and choose our own sexual relationships, hold jobs, etc. Even being forcibly sterilized. The idea that we don’t become adults has serious consequences, and I pointed out that broadcasting that idea all over the place, even with good intentions, still contributes to the stereotype, and to the harm it causes.

At that point, I was told that the parent in question was only honestly expressing her feelings, which she had a total right to do. In other words, she had a total right to take up that space at the great expense of other people. Her emotions were more important than other people’s uteruses. And if she didn’t intend to contribute to all that negative stuff, then she wasn’t contributing at all to it, right? And I was calling her a monster who didn’t care about people, right?

Well, no. I wasn’t. I even wrote a post trying to explain that I wasn’t making people into good guys and bad guys. And even that I’d been on the other side of this one, I’d been told that it was wrong to say things like this about one of my brothers. Things I’d been taught were okay to say, and never questioned. And that when someone did tell me it was wrong to say it, I listened and I stopped saying it. I pointed out that there are ways to discuss these feelings without condoning them. All the person had to do was explain why, while these were feelings, they weren’t the reality, and treating them as the reality could cause real harm to some people. Or else they could refrain from discussing it altogether.

Both of those are small actions that take very little effort, but both of those were more effort than the person was willing to make. Even though it took far more effort and energy to attack the messenger who told them the harm these ideas could cause. Lots of people popped up to reassure the person that I was just angry and not worth listening to, and didn’t understand or care about the situations parents faced. And I eventually gave it up as pointless.

But that’s a good example of the “You’re saying I’m a monster!” response. It’s also how a weird little twisty thing works, where if you talk about how certain actions dehumanize disabled people, you can be accused of such things as “demonizing parents”, and being full of hate, while all the while the person is actually stirring up hate and against you. That one always turns my mind into a pretzel, but it basically runs that pointing out something is wrong is calling someone a monster and hating them, and that it’s then okay to hate the person who’s supposedly doing that. Or something.

Also, people say that discussing this is just some kind of attempt to make people feel guilty. Well, it isn’t. Sitting around feeling guilty doesn’t help anything. Changing the way you act, does. In fact, changing the way you act is generally both more helpful and less painful than sitting around wallowing in guilt, hostility, or resentment about being made aware of a situation that those most negatively affected by are already well aware of.

But understanding the roots of these attitudes explains a lot of things. It explains why there are a number of people in the world who believe it’s special treatment or unfair advantages when people of color, disabled people, women, or whoever, begin getting even a fraction of what other people get by default. Because it actually requires other people to give up some of the unfair advantage they’ve been immersed in (and taught to view as — at least for them — normal) their entire lives, and that just about everyone but them is painfully aware of. It forces them to stop taking up space that never belonged to them in the first place. And going from having a ton of unfair advantage, to having less of it, feels, to them, like other people gaining unfair advantage.

When I put it like this, my friend related it back to a post she had made on her own blog. It’s called On Flavors of Privilege and it’s well worth reading. It’s about when she found out that her roommate in college initially distrusted her because she was white. And it details a lot of her less-than-productive responses at the time. She’d expected more of “the usual”, which meant, more people telling her she was scary or standoffish. I’ve bolded parts I find especially relevant:

I didn’t get “the usual”. Instead, I got an admission that I made her nervous because I was white.

This completely shocked me. I sputtered something like, “But I’m not racist! Why would you even think that?”

I don’t remember what my roommate said in response, or how that conversation eventually resolved — but nevertheless, things were much better afterward. We actually ended up getting along quite well for the rest of the time we shared a room. Still, though, it wasn’t until several years after graduating that I was able to see the illusory nature of my moral high horse.

She actually decided that her roommate had been the one who was prejudiced, and that she’d “gotten over” that prejudice:

My mistake had been in presuming that my roommate and I were actually on a level playing field to begin with as far as our backgrounds went — meaning that (in my mind, at the time) her reaction had been “paranoid” until she’d gotten a clue, whereas mine had been “reasoned”.

If that wasn’t a privileged assumption on my part, I don’t know what is.

In describing what kinds of advantage she has and hasn’t got — what areas she automatically, water-like, flows into and takes up space in because the space has been taken away from others for her benefit whether she likes it or not:

Sure, I might get looked askance at by some due to my “odd” body language or fleeting eye contact or idiosyncratic, inconsistent use of language — but in general, I don’t have people making cracks within (or outside) earshot about how I and my family are probably “illegals” who ought to be deported.

In general, if I walk into a store, the clerks aren’t looking at my skin color and raising their vigilance levels due to a perception that people who look like me tend to be thieves.

I don’t constantly hear speculations about how people of my ancestral background are probably less intelligent, more aggressive, or less honest — and that somehow “statistics show this, and anyone who doesn’t believe it is just being PC”.

I might hear other speculations, all of them equally misguided, but that doesn’t make the ones that get applied to others and not me “not my problem”!

The part about “not my problem” reminds me of the actions of some parents towards autistic self-advocates, including in the situation I described a little bit further back in this post. Parent-advocates are used to being on the wrong end of certain kinds of discrimination themselves. They are used to being treated by professionals as if they don’t know anything. They are used to fighting back against this idea.

Unfortunately, some parents carry their “fighting back against professionals” mode into their interactions with autistic self-advocates. The advocacy world is heavily parent-dominated, and autistic and other disabled people have had to fight our way in to have a voice at all. But many parents adopt a mentality that says that they are always at the bottom of any hierarchy in this situation. And when autistic people’s views are not the same as the views of these parents, they fight back as if autistic people are oppressing them, as if parents are on the bottom of this hierarchy as well. And that is not true, rather the opposite. (I’m speaking in generalities, and well aware there are autistic people who are also parents.)

Unfortunately, it is very hard to discuss this, even with many parents who view themselves as allies of self-advocates. Because we are supposed to be working together as equals. They mistake pointing out of the inequality here, with creating the inequality. They are unaware of the inequality until someone says something, so that person must have actually caused the inequality, and we would go back to equality if that person would just shut up. (Echoes of “you’re just being too PC”, which is not a valid criticism, merely a blanket dismissal.)

But unfortunately, shutting up just promotes that inequality. Acting like everyone has equal power doesn’t make it so, and can in fact perpetuate inequalities. It’s a good goal, but we’re not there yet.

If I could provide a list of things to be aware of around this stuff, it would be something like this:

1. Just because you can take up certain space, doesn’t mean it’s right. Often it means that other people are prevented in some way from taking it up themselves.

2. People aren’t always right if they are saying something’s wrong with what you’re doing. But it doesn’t mean your defensive reactions, complete with obliviousness to the space you’re taking up, are right, either. And those reactions can cause more harm sometimes, not less. So try to rein them in and really listen.

3. If someone points this out in one area but can’t see it in another, it doesn’t mean they’re a hypocrite and shouldn’t be listened to, but just that they have the standard cognitive biases most people have.

4. Taking up space you don’t deserve doesn’t make you a monster, and doesn’t mean you’re supposed to feel awful or guilty or something. Doing the wrong thing sometimes is human. Everyone abuses power sometimes without realizing it. It’s also still wrong and worth correcting when you’re both aware of and capable of it. This also means it’s not okay to consider someone else a monster just for engaging in this stuff.

5. Often it’s a lot easier — and a better thing to do — just to stop doing something and apologize, than to stir up a big fight about how you’ve got a right to do whatever the heck you want to.

6. Recognizing power inequalities isn’t the same as making pointless euphemisms like “specially challenged”, and therefore doesn’t deserve the label “PC”. Calling these things “PC” is just a way to ignore them.

7. Recognizing these things doesn’t mean you have to be absolutely sure you never do anything remotely wrong and focused on every single last possible detail of yours or anyone else’s actions. It’s just something to be aware of and keep in mind in general. Becoming focused on every little possible detail that could ever come up, is usually counterproductive to that aim.

8. Righting power inequalities isn’t the same as causing them, even if it looks the same to someone who finds the existing ones invisible. Having to pay attention to these things when you never had to before, is not “oppression”.

9. Pretending inequality isn’t there doesn’t make it disappear, any more than the outside world disappears when you’re asleep. This is the big fallacy in things like “colorblindness”.

Oct3

Michelle Dawson won her human rights case.

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Here is Michelle’s blog entry about it.

Here is the HTML copy of the decision.

Here is the PDF copy of the decision.

I will quote a similar part to the part Michelle quoted:

[242] Be this as it may, the Tribunal finds it disturbing for the future of autistic people that they be seen because of their condition to pose a threat to the safety of others and some form of nuisance in the workplace. An employer has a duty to ensure not only that all employees work in a safe environment but also that ill perceptions about an employee’s condition due to poor or inadequate information about his disability lead other employees to have negative and ill-founded perceptions about him.

[243] An autistic person should expect that his workplace be free of any misperception or misconception about his condition. It goes to the right of autistic individuals to be treated equally, with dignity and respect, free of any discrimination or harassment related to their condition. In this respect, in a society where human rights are paramount, an employer has the duty to dispel such misconception or misperception about such individuals.

[244] This duty stems from the Canadian Human Rights Act and the need to get rid of any discriminatory behavior in the workplace as well as in society in general. It is worth reminding employers as well as society as a whole that the purpose of the Canadian Human Rights Act, as stated in section 2 of the Act, is to give effect to the principle that all individuals should have an opportunity equal with other individuals to make for themselves the lives that they are able and wish to have and to have their needs accommodated, consistent with their duties and obligations as members of society, without being hindered in or prevented from doing so by discriminatory practices based on race, national or ethnic origin, colour, religion, age, sex, sexual orientation, marital status, family status, disability or conviction for an offence for which a pardon has been granted.

[245] Autistic people, if they want to be able to accomplish themselves in a workplace or in society, need to be reassured that everything possible short of undue hardship will be done in order to ensure that misperceptions and misconceptions about their condition are properly handled by their employer, so that co-workers have a proper understanding of their condition and are not inclined to discriminate against them or harass them.

[246] To discriminate on the basis of somebody’s physical appearance or social behavior might be one of the cruelest forms of discrimination. Here, Ms. Dawson was seen or perceived, at one point in her career at Canada Post, to be a threat to her co-workers because she had self-injured in the past, not because she had assaulted colleagues. She was later on perceived as a form of nuisance because she insisted on obtaining rational responses to her queries and never backed down. The fact of the matter is that Ms. Dawson was, until her diagnosis became officially known to Canada Post in 1999, seen as an excellent employee.

[247] The Tribunal is of the opinion, in view of the evidence, that the Respondent needs to review its policies in relation to discrimination and harassment and put in place educational programs that will sensitize its employees as well as management to the needs of disabled individuals in the workplace, notably autistic individuals, so that individuals such as Ms. Dawson will not have to suffer from a lack of knowledge and understanding of their condition. In this respect, given the Canadian Human Rights Commission’s expertise in these matters, the latter can surely provide assistance, which should be welcomed, to the Respondent.

Congratulations, Michelle. This decision ought to make things not only better for you, but for all autistic Canadians who might be in your position.

My only concern is that I hope that other autistic people will be taken as seriously as Michelle was, if they are not able to maintain the standard of perfection in employment that she did for a long time. She had, until very near the end, never taken a sick day, and never complained.

I do not know precisely why that was, in her case. But I do know that in general, disabled people, like many other people viewed with suspicion by those with more power in a society, have to work harder than everyone else, and hold ourselves to a higher standard than everyone else, in order to be considered anything close to equal.

This means that for many of us, me included, we learn that even in the event that we are capable of communicating about health problems, then we should not do so. This often leads to the eventual collapse of our health when things that could possibly have been caught and treated early, are left to get to emergency levels. In the worst cases, it leads to our deaths. Living in constant physical pain has negative effects on the body, but many of us do exactly that rather than risk being perceived as slacking or incapable.

In the book Real Eyes by Ruth Ryan and Dave Hingsburger, I read about a woman who was referred to Ruth Ryan, a psychiatrist, for “hysterical” abdominal pain after she collapsed trying to get to work one morning. Turned out she had not only one but two conditions causing it, and either of them alone would have made most non-disabled people not even attempt to get out of bed, let alone to work.

Something’s wrong when that happens, but it’s a constant theme in the lives of nearly every disabled person I know, as well as non-disabled people working or living in settings where people like them have historically been frowned upon. Let people see weakness and you’re frequently perceived and treated as either incompetent (and an example of how incompetent everyone like you is) or lazy (and an example of how lazy everyone like you us). So we learn that even when it is possible for us to do something about these things, we should do so in total privacy if at all.

That can be a necessary survival tactic in some contexts, and it can give us added credibility once something goes so wrong that we can’t hide it. But it shouldn’t have to be. As I said, I don’t know Michelle’s specific reasons for her excellent work record, it could just be a result of her personality. But I hope that, had Michelle needed sick days, and had she needed more extensive barriers removed for her in the workplace from the start, that the Human Rights Tribunal would have decided in her favor anyway. And I hope that in the event an autistic person in the future needs drastic modifications to the job from the beginning, or has to take time off periodically, and in the event that something happens to them that is as awful as what happened to her, then they will be treated far more fairly than what Michelle Dawson had to go through to get to this point.

I hope that is the direction that this victory leads Canada in, and I hope that people in other countries take note as well.

Sep22

“I Am Gonna Write You Up”

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Peter Leidy is a case manager (I think that’s what it said, anyway) who writes song parodies about the disability service system, from several perspectives. I think he also writes political songs, but I haven’t heard them before and haven’t been too interested because they’re all about Wisconsin. So far I have his first two “human serviceland” CDs, but not his third. The first one is very good, the second one varies from very good to almost painfully naive-sounding (I can’t tell if it’s ironic or if he really feels that way about those topics), and the third I haven’t heard yet.

Anyway, I found out he’s got some free MP3s out there on the same page he’s got some of his CDs for sale on. And one of them “I Am Gonna Write You Up,” I don’t know what perspective it’s intended to be written from, but it reminds me of the worst kind of power-tripping staff (many of whom are probably blissfully unaware that they are power-tripping at the time, and who think they do an excellent job, and may even be thought by others to do an excellent job and be “good with Those People” and so forth).

It reminds me of the time I, for instance, got written up simultaneously as violent (without having actually touched anyone), AWOL (while being an adult allowed to leave any place any time I wanted to), and trespassing (for being physically unable to stop walking until I literally walked straight into someone’s fence, which was not at all trespassing under the law of the area I was in at the time). I was finally decided not to be punishable for those things, after other witnesses (as well as physical evidence) made it clear that I hadn’t done what those words said I’d done (although there were attempts to slander one of them as well, she was described by the writing-up person as a “renegade staff” o_O — presumably because she, at the time, told the person to stop getting in my face and screaming at me, and listen to what I was saying).

And it’s a great song, so you might want to try downloading it.

Lyrics behind the “more”, for anyone who can’t hear it or can’t make out the words.

Read the rest of this entry →

Sep21

On adjustment, dogs, and not “smiling through the pain”.

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I’ve recently seen a lot of people comment on disabled people’s opinions, in the context of “adjusting” to whatever condition we’re said to have.

Basically, if a disabled person is fine with being disabled, then it’s clearly some kind of defense against having to “hope” for a cure. The idea of just being okay with the way your body functions (at least to the extent most people are) seems to be unthinkable to some people. And the idea that disabled people’s opinions come from deep emotional conflicts over the fact that our bodies work the way they do… just no.

I used to talk online with someone who had cerebral palsy. She said that every time she had a negative emotion, it was considered to be “not adjusting to her disability”. Even though she was born that way. She didn’t need to adjust, she’d always had a body that operated the way hers does.

The fact is that a lot of disabled people either actively don’t want to have bodies that function in typical ways (at least not in all respects), or else basically don’t want to be bothered.

About not wanting to be bothered:

Lots of children dream of becoming sports stars. This may lead to them getting into that sport on a child’s level, but very few take it to the point of making it their life’s goal. Often, they do not have the kind of body, or reaction time, or cognition, suited for whatever that sport is. And generally they find other things to do with their lives, enough other things that not being a baseball star doesn’t ruin their lives, and most of the time they don’t even think “Gee, I’m not built to be a baseball star.” It’s just not part of how they work, and so it’s not even an idea that crosses their mind often.

Not everyone is built to be a sports star. Most people don’t lament not being one, or they might do so a little but not a huge amount. This is because it’s considered normal not to have a body optimized for that particular thing.

The same is true for disabled people. We don’t have standard bodies (I’m including brain in body for simplicity of language here, and also because it is a body part), any more than most people have standard sports-star bodies. Most of us don’t lament that fact. Those that do (especially those who suddenly became disabled), generally get over it.

Or as one person said, whose name I wish I remembered so I could cite wherever she wrote this, “I don’t wake up in the morning and think ‘Yep, still disabled.'” (That’s either a quote or a close paraphrase, I’m not sure.)

Most people see disability as this huge, life-altering, scary, tragic, horrible, unremittingly unpleasant, thing. And so they imagine that’s how most disabled people see it.

Some of us do. But most of us — even many people with shortened lifespans — see it as an inconvenience at worst. We may or may not do things to make our bodies function in more typical manners, but most of us do not spend all our time engaging in pointless exercises in self-pity. The fact that some people expect that we do (and that all our other thoughts on disability are just a defense against feeling sorry for ourselves) says more about the people who say that (and their conception about what it’s like) than it does about us.

Dave Hingsburger once compared me to a three-legged dog. I had clearly found ways of doing what I needed to do, with the body I’ve got, rather than emulating someone with a more typical body. I was also not particularly wallowing in a huge sea of negative emotions for having the body I’ve got (why would I?). He’d seen a three-legged dog that was the same way.

In fact, three-legged dogs and cats generally do just find ways of doing what they’ve got to do with the bodies they’ve got. Not because they’re “too simple” to know better or something, nor because they’re any stronger or braver than humans are, they just for whatever reason don’t tend to automatically go in the direction of “Woe is me, I am disabled.” They seem to just figure out what needs to be changed and change it (if they weren’t born that way, in which case they just figure out what to do the same way anyone does).

I think that human beings could take a lesson from dogs and cats this way. Not like “Wow it’s so inspirational that that cat still walks around even though she’s got to use a cat-wheelchair for her back legs.” (What do they expect her to do?) Not like, “Wow that dog really overcame his disability, and we should do the same!” More like, why throw all these pointless and meddlesome ideas on top of an experience that’s close to universal when taken across an entire lifespan?

It seems though that many people view disability as necessarily something that you have to be in a constant adversarial role with. In which case you have to “adjust” to it or something. But… really, views about disability are not all tied back to some imaginary experience people would think we are having as disabled people. People seem to think they have to make a relatively simple thing more complicated than it is, adding all kinds of layers of emotion and misconceived thoughts to it.

So, no. My views about my body, such as they are, are not all “adjustments” to having it, any more than most people’s feelings about their bodies are “adjustments” to having their bodies. But it seems like in some circles you have to have a more-or-less standard body in order to be allowed the privilege of not having their thoughts and feelings (especially positive ones) about their body be considered an “adjustment” to the awful state of affairs that their bodies are presumed to be. Or as the book Pride Against Prejudice by Jenny Morris said, just because we are happy does not mean we’re “just smiling through the pain” or “just putting a good face on it”.

Sep19

DIY Communication Devices

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Disclaimer: This is about a communication device that Anne helped me set up as a backup communication device (all my other backups — mostly bought used, some bought broken to replace parts in dead ones — have by now long since died or otherwise become unusable by me). Make one of these things at your own risk. Before you buy it, look into it more, understanding that so far neither Anne nor I have figured out how to get full functionality out of the software, and that it involves various vaguely techie stuff like looking for DLL files to download and stick in the right directories and stuff, or the thing simply will not work at all. And this device may be totally unusable to some people for a number of reasons that have to do with the size and shape of the machine, input accepted, etc. It’s not a replacement for a primary communication device either, but an excellent backup for some people, and for other it might be what they’d have to settle for until and unless they got something better.

Anyway, none of my backups work well enough for me to use at the moment (most don’t work at all), and even my main communication device is well-nigh impossible to use with the telephone in my house because of pesky things like logistics, priorities, and the laws of physics.

But I thought this sort of thing would be useful for anyone who has speech difficulties, whether it’s a physical thing, a cognitive thing, an emotional thing, or whatever. Anne said she’s thinking of publishing a guide on putting one of these things together, and that sounds like a good idea to me.

The best part about this is that all the parts can be found used and/or refurbished. This is a good thing because a huge number of disabled people are one or more of the following:

  • Under, at, or near the poverty line (unable to afford new equipment, might be able to afford old equipment)
  • Unemployed or underemployed
  • Uninsured or underinsured
  • Severely doctor-phobic (either because of the same condition that causes the speech problem, or because many disabled people have been so badly abused by parts of the medical profession that we end up fearing the whole thing)
  • Unable to speak (or speak clearly) for reasons that insurance wouldn’t cover, that medical professionals want them to ‘just get over’, or that would mean discriminatory treatment if people found out the reasons. (For instance, someone so anxious they can’t talk to supermarket clerks might find a medical professional unwilling to get them a device, even if the supermarket problem logistically needs to be solved before the anxiety problem can be solved; alternately they might encounter potentially life-threatening medical discrimination if their doctor found out they had a problem most people consider psychiatric.)
  • Intermittently unable to speak, which sometimes means insurance won’t cover it (although insurance funded my first device while I still had intermittent speech that was superficially good the moments I had it)
  • Under insurance plans that only let them have one device for a huge variety of situations, including situations where you really need a small and lightweight device (when your normal one might be big and heavy for good reason)
  • Speech-related trouble that is so mild that insurance wouldn’t cover it, but that still impact the person’s life heavily enough they want an alternative.
  • Etc.

So basically, not everyone can get a device. This isn’t a perfect solution because it still costs money and not everyone has money. But something you can get for anything between $100-400 depending on where you get things and how lucky you get, is still better than getting a worse device for $2000 (yes, I have seen far worse for that amount of money).

The parts are:

  • An HP Jornada of the sort that have a keyboard. (Mine’s a 728, Anne’s is a 720.) Although technically this could also run on something that takes a stylus, as long as there’s an onscreen keyboard (in fact parts of it run better on standard PDAs than on this series of Jornadas). I’ve seen these things go for anywhere between $10 and $250, and obviously a lot depends on the condition and where you’re getting it, and also whether you need to buy a new battery for it or not.
  • An external speaker that will have louder sound than the PDA itself (because the PDA has very minimal sound in most situations you’d wnat to use one in), and high enough quality to carry the voice. Anne and I both independently came to the conclusion we’d get Altec Lansing orbits, but there are undoubtedly better things out there than this, especially for people with coordination problems or hand weakness given how it turns on and off. I’ve seen those go for anything from $5 to $100.
  • A voice from Cepstral ($20 each, I picked Callie, Anne picked Diane)
  • A couple of DLL files since Jornadas usually run Windows Handheld 2000 and the software is written for more standard Pocket PCs. It’s specific versions, Anne and I are testing a lot of them to see which ones are best. They don’t provide full functionality of the Cepstral software, but then again that might be a screen shape issue. Full functionality, however, is nice, but not necessarily needed.
  • Velcro (Anne’s method so far), duct tape (my method so far), or some other means of affixing the speaker to the back of the Jornada.

And here’s the result:

jrnd1

jrnd2

jrnd3

My hands are there for size comparison, though the angle can make that confusing. Be aware I have small hands.

I have not yet got a video for it, and don’t hold your breath waiting, I haven’t been good at making videos lately at all.

Anyway, the plus side so far (some of these would be drawbacks for other people):

The portability. Sometimes I don’t have the energy, time, and/or inclination to lug a Dynavox around.

The size. Which is the reason I can’t use the Dynavox on the phone at the moment with other logistics and priorities within my apartment. Practically the moment I got this thing together, I had to make a pretty high-priority phone call to one of those services that calls you back later. I hadn’t been able to take those calls by myself in ages. So I didn’t get it a moment too soon.

The battery life seems pretty long so far. I have heard it’s longer on a 720 than on a 728, presumably because the 728 has more memory (AFAIK the only difference between the two). I haven’t had time to test this.

Keyboard size. I have tendonitis and not having to move my hands as far is really helpful. (I can’t imagine ten-finger touch-typing on this with large hands, I’m not even sure whether people with average-sized hands can do it or not.)

The shallow and light keys. The combination of tendonitis and hypermobility makes me dislike any key that’s hard to press. These are very easy to press. (Which might be a pain for someone who wants a lot of tactile feedback when the buttons are pushed.)

The minus side so far:

Some of the menus cut off halfway down, Anne and I have not figured out a way around it. (If anyone is willing to help us find something that allows us to either scroll the desktop down past the bottom of the screen, or take an already-running program and wrap anything going off the bottom of the screen onto the top of the screen, let one of us know. If anyone’s able to program a better-suited either cheap or freeware frontend to the Cepstral voices with the same functoinality, also let us know. This, among other things, is preventing us from saving our voice configurations, we have to slow down the voices and (in my case) lower them a little, every single time.)

The external speaker is hard to turn on and off, due to having to grab it and twist in a very particular way. It seems like it could break easily too, and it’s gotten stuck in between on and off several times.

The DLLs were a pain to get, both of us had to do them from scratch. We might provide better information on that later.

I don’t know that this will be a problem for me or not yet, but I’m not sure how durable this thing is. I no longer fling communication devices at walls or bash them on my head, but I’m still given to forgetting I have a hand, and consequently dropping things as my hand reverts to neutral or fails to correct for some other movement.

I haven’t figured out a way to mount it to my wheelchair yet, let alone at the right height. I wonder whether cannibalizing a mount-plate would be feasible, or whether that’d introduce other problems (it’d have to be able to come on and off even the mountplate quickly, because it has a USB cradle it has to fit into for charging and communication with my computer). Don’t know yet.

I have not yet gotten Ubuntu linux to recognize the Jornada as even existing, let alone talking to it. Still working on it. Haven’t yet tried using wine, I just booted to windows altogether.

I have also not yet tried finding the equipment to plug one into the phone directly. You can buy a thing from Radio Shack for about $15ish IIRC, that is meant for recording telephone calls with and playing tapes back over the phone. You connect it to the phone, flip it into “play” instead of “record”, plug it into the headphone port of the device, and you have a real (if sometimes awkward and ungainly) means of using a device’s sound output directly into the telephone. Depending on the situation an amplifier might also be necessary in between the communication device and the previous doohickey I just explained (I don’t know the word for them).

Anyway, I’m very happy with it so far despite its shortcomings, and looking forward to being able to improve on it. I am sure many variations on the same theme can be made, some of them more cheaply than this, some more expensively. Cepstral is a great source of cheap voices. Joel has made JTalk software to be used with different voices, on a different platform. Neither his nor Anne’s projects are intended to replace a person’s primary mode of communication, there’s too much that could go wrong that way. But as a backup or supplement to another means of communication, they can be excellent, and I’m very happy with it.

Sep14

I don’t know anything about economics, but I know this is bad.

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I know almost nothing about economics. I have to admit I don’t even know what a stock is, despite many explanations by many people. Some people have told me it just doesn’t fit with my kind of brain. Other people have told me I didn’t grow up with rich enough parents to be immersed in this kind of talk the way some other kids were (when we covered this in school, I was the only kid in my class whose dad didn’t invest — not that I retained a lot of learning from school anyway). Still other people have told me that the reason I can’t comprehend it is because it’s inherently self-contradictory on many levels and everyone sort of pretends it makes sense, and I’m not good at doing that, or something. Regardless, it’s just not a subject I have ever been good at, it might as well be gibberish as far as I’m concerned. (And I don’t even know stuff that I was immersed in, like credit, well enough to be confident in using them. This is the biggest reason why I have never had a credit card — I don’t dare mess with money in ways I don’t understand, and I understand it less than the average person does.)

Whatever is going on, and whatever my lack of understanding, I know that this can’t be good.

The New York Times seems to have several stories on the topic. That is one of them. It’s also the top story on Google News, with 2223 related articles the last I was able to search it, and every time I look there’s a different headline at the top.

I’m told that economists have been predicting this sort of thing for awhile, but everyone’s been distracted.

I’m also told that we have a chance of patching this up for a little while, but it’s only a patch-up, and things are likely to be really screwed up for awhile.

I hope that people are able to see that this sort of thing matters more than whether people agree on a lot of other things. Just like a lot of crises matter more than individual differences of opinion (the way the environment is going is another one that seems hopelessly mired in the worst kind of politics (the kind most people think of when they hear “politics”, not the kind of politics I usually try to involve myself with)). This is one of those things where people have to get past their own ego and look at the bigger picture no matter who they are. I’m just afraid that the most powerful people, won’t do that, they’ll be too busy point-scoring against each other to even notice what to do. I hope to be proved wrong.

Larry Arnold has repeatedly warned against choosing political candidates entirely on the basis of their stance on autism-related issues — things like climate change, for instance, are a heck of a lot more pressing. And as he frequently notes, in the autism and autistic communities people often lose sight of the fact that we are only one form (or at any rate, a small number of forms) of neurological variance, and neurological variance is only one set of the variances that comprise disability, and disabled people are only one part of the human race. It is true, that some of us (me included) are thinking of the larger picture while only able to write about pieces of it (because of a combination of our own limitations around language, and the limitations of language itself), and that many of us have a lot more thoughts on a lot of things than we can express at any one time. But it is also true that at some point that people who can address these things explicitly at any given point, need to do so.

I’m not saying conflict is bad. Conflict over the right things is absolutely essential. But before you jump into conflict-mode, make sure it’s over the right things. And whatever you do, don’t be like a bunch of North-Going Zaxes and South-Going Zaxes clinging to their mental widgets for dear life while things they could actually do something about are falling apart around them in the real world that those widgets are directing them away from (like a weaving a charmed web alway, and all that — does combining Dr. Seuss and Tennyson in the same breath mean I’m up too late?). There’s a time and a place — make sure it’s that time and that place.

And I hope that people will actually work together to solve these various more universal problems, rather than getting lost in the endless discussion of who is opposed to which thing that has nothing to do with this, or only tangentially is related. I have nothing to contribute in terms of knowledge of economics, and none of the powerful people will likely read this. But I am often capable of recognizing a situation where it’s important to put aside other differences while working on a problem. And this is certainly one of those situations. I don’t expect the people with the most power to be reading this or anything, but I hope that this will at least remind people who do read it to think twice when they recognize themselves losing focus on what is important. “People who do read it” includes me, and I’m writing this as much to remind myself as any other given person.

Sep6

Conceptualizing Autism

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I know I haven’t posted in awhile, and this isn’t really much of a post, but I just wanted to direct you to:

Conceptualizing Autism

Which is at Existence is Wonderful, and manages to clearly put into words a lot of things I’ve noticed but never been able to say all at once. (Something that Anne is talented at in general.)

Just one quote out of many good ones here. She talks of three different ways of looking at autism — in terms of neurological structure, in terms of lived experience, and in terms of outward behavior. Of the set of outward behavior normally used to recognize autistic people, she notes:

What is interesting, and perhaps a bit unnerving, is that this category is at once the one people tend to put the most stock in (in terms of identifying autistics, in terms of determining what educational supports we might need, etc.) and the one most subject to cultural biases, personal biases, misinformation, and the ever-changing social lens through which different kinds of people are generally viewed.

Aug14

The best present I’ve ever received.

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Parents, take note: This is something you might consider doing for your children.

People in general, take note: If your parents are alive, and you’re able to ask them for things like this, it might be a good thing to ask for.

Today’s my birthday, and my parents sent me the best present I’ve ever gotten. (I’m saying this here in case, as is likely, I’m not able to on the telephone call because of my current setup.)

They sent two binders. One for each of them. Inside is the beginning of the story of each of their lives, as well as descriptions of where they lived and what it was like growing up, including how it differed from where and when I grew up, as well as historical events that happened at the time. They put in childhood photos, and also photos and maps of the places, people, and things they interacted with. They wrote them separately from each other, then showed each other when they were done. And they said they’d send more pages later for me to put into the binders.

Most people don’t know a lot about what their parents were like as children, and how it differed from their own lives. For me it’s a bit more extreme than usual, because my parents were older than usual when they had me. (People often thought, when I was growing up, that my father was my grandfather — he’s old enough to be, and he had a grey beard. They thought my brother was my father, too, since he’s fourteen years older than me and (like the rest of the family) a good deal taller.)

One of the first events my father describes is the bombing of Pearl Harbor, which occurred when he was a baby. My mom talks about how when she was a kid, her left-handedness was considered pathological, and considered not only related to which hand was dominant, but also to her habit of incessant question-asking and any other unusual traits she had. (She said when her father injured his right hand, she very seriously warned him that he would begin to ask questions about everything.)

I’m not going to go into public detail about everything they said unless they give permission, because I’m sure some of it is personal. But I have to say both of them had very interesting, and sometimes hilarious, lives. And it was interesting to see how they thought of things when they were three years old, too.

Anyway, I think this is one of the best things you can give your children when you’re a parent. It gives a sense of perspective that I never had because I never knew much about their childhoods. And I think everyone ought to be able to find out what it was like when their parents were kids. I’m looking forward to their later installments. (And I’d suggest to my parents, if you haven’t already, you might want to send these to my brothers too, they’d probably be interested as well.)

Aug13

About this “can’t defend themselves” stuff.

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I’ve seen some other people, such as Dave Hingsburger, begin to get really irritated with responses to a certain situation. Basically a movie that says ‘retard’ a lot and stereotypes people with developmental disabilities. Many people have been responding saying that it’s awful because disabled people are defenseless, incapable of defending ourselves.

I commented in one spot about that, and nobody responded to me. But Dave Hingsburger commented on it, and lots of people responded to him. They said that they had very young children, and that no child can defend themselves, and therefore it’s okay.

But can’t anyone see that doing this on the (strongly implied) basis that we’re all children is the problem?

If a movie were putting out horrible stereotypes of women, enough that women felt the need to protest, and of course those who cared about women also felt that need, would anyone say, “Poor things, they can’t defend themselves”?

Well yes, some people might. It’d be recognized as a damaging and inaccurate stereotype though.

And I don’t think anyone would dream of saying, “But… but… I have a little girl. She’s only four months old. No four-month-olds can defend themselves against this stuff. So it makes total sense that people say women in general can’t defend themselves.”

It’s no different if you say it about babies or young children with developmental disabilities. This is stuff that affects us all — everyone it’s applied to. Most of us are adults. To defend a stereotype of us based on the fact that it’s true of children, is just one more added stereotype.

I hope this makes sense, I’m having trouble getting the words for it. But I am finding myself more irritated at the assumption that it’s okay to talk about an entire group of people as if we all have the same defenselessness as a young baby (and that a young baby in a certain category being defenseless, means it’s okay to call everyone in that category defenseless — hey, I guess everyone can’t defend themselves then, yes?), than I am at the original thing people are objecting to.