Monthly Archives: June 2009

CIL Budget Cuts Reversed–Victory in NJ!

statue of winged victory against a blue sky with a few cloudsPreempting my planned post for this afternoon to give good news for a change regarding state budget cuts! This just hot in my in box from Next Step:

The 200-plus people who rallied in Trenton on May 14 to restore budget cuts to New Jersey Centers for Independent Living can declare victory. All budget cuts have been restored!

This is the first time I’ve been able to post back with some good news, some positive results of self-advocate efforts to prevent the states from taking away our lifelines. Hopefully this can help encourage us to keep rallying, protesting, calling, and complaining. Keep telling your stories and making it known that it is not OK to balance the budget by taking away people’s ability to survive or have any sort of quality of life.

It’s hard work, but we still have hope of success, one small bit at a time.

Read more at Corzine Watch blog.

Division, Revisited

photo taken at an extreme perspective from below.  on the left a middle-aged white woman with long dark hair. in the center a young white man with short blond hair. at the right an older black man with short white hair. windows to the sky above themLast week I posted about the divide between professionals, parents, and self-advocates, questions raised because I knew I’d be walking into a conference that was intended to cater equally to all three. There were divides, yes, and some of them necessary, good divides, and others–not so much. There was some common ground as well. There was definitely a lot to think about.

In a past life, I worked for a very long time in the field of technical communications, information design, and web development. I managed a company-wide intranet and wrote most of the documentation for a telecommunications / software development company. It’s the sort of work that invariably starts with the question “who is the audience?” Because, well, writing a help file for customer service representatives is quite a different thing from writing a help file for a network engineer–or a troubleshooter. Context is then the second question: what does the audience need to get from the writing, how will the audience be using the information? Y’all expect complete sentences and something resembling good grammar in a blog post, but when you’re frustrated with a piece of software you don’t want to have to wade through walls of perfectly formed text–you want to see the solution to your problem instantly and fix it quickly. Speed of information retrieval is usually more important in software help files than proper grammar.

So, like, what does all that have to do with autism community divisions? Or a conference?

When Elesia and I were preparing our presentation on self-advocacy for people who use non-standard communication (focus on deaf and autism stuff), that question of audience and information usage was just as critical as it had been in my tech com days. Were we writing directly for speech/language professionals? For parents looking for things to teach their kids? Or were we writing this for people like ourselves? We had to write for all three audiences as best we could, but in the end decided to address the self-advocates as our primary audience. “I’ve sat through enough talks where a professional or parent talked about me ‘the client’ in third person, let them experience what it’s like for a change,” I even grumpily said. So our presentation made the assumption first and foremost that we were addressing our peers.

What does this have to do with questions of division within “the community?”

In some ways, yes, the divide is artificial and way more antagonistic online than it is in day-to-day “meatspace.” However, in some other ways the fact that audience and context matters may point to some more solid reasons for why the divide does, and likely will always, exist.

How do I protect myself from abuse when I am invariably far too trusting of others? –This is a question I ask for myself. Answers need to play to my skills and strengths.

How do I know if the person who looks after my daughter can be trusted not to abuse her? –This is a question a parent might ask. Answers need to play to the parent’s very different skills and strengths.

How do I teach the person I work with to have a better danger sense about others? –This is a question a professional might ask. Answers are in a different format here than for the parent or self-advocate.

The answers to these questions are, necessarily, different due to differences in perspective, motivation, and context. This isn’t a bad thing, it’s just a thing. Is there a way to make these different perspectives, motivations, and contexts complimentary and respectful instead of antagonistic and offensive?

Megaconference Special #6 of 6: ADA Sections II and III

close up of the side of the u.s. department of justice building, gray bricks and the letters spelling out 'department of justice'The second session I went to on “ADA Day” was on sections II (publicly funded items) and III (privately funded items). This means accessibility for things like: public transportation and private taxi companies, court houses and retail outlets, and public hospitals and private clinics.

Three things I learned that I did not know before were:

1. You do not need to hire a lawyer to file an ADA complaint. You can complain directly to the Department of Justice. For education-related complaints, you can go directly to the Department of Education.

2. One of the things that can be directly requested in a complaint is that staff wherever the complaint has occurred be trained on ADA / disability / access / sensitivity, and even that they receive ongoing training on such.

3. A requirement to comply with the ADA is that all government services and institutions provide Effective Communication, including any “auxiliary aids and services” (this could include picture-based communication and communication devices). This is really quite huge for those of us who struggle with conventional communication, take a look at what the ADA toolkit says about Effective Communication.

Lots of good stuff out there that isn’t always well-known! This is a powerful tool we have; need to use it more often.

Megaconference Special #5 of 6: ADA-AA Whyfor in Employment

close up of a chalk board that reads 'SOCIAL EQUALITY' the person's fingers writing the final 'Y' are visible in the lower right cornerSaturday ended up being “ADA Day” for me at the Megaconference, both sessions I attended being on the ADA (Americans with Disabilities Act). The first was called “The ADA Amendment Acts of 2008″ and focused on the definition of “disability” according to the ADA and employment (Section I). The key item stressed in both ADA presentations is that the ADA is civil rights legislation.

As someone who followed the ADA-AA as it was being worked on last year, I was already familiar with the basics–that the power of the ADA had been weakened and that the ADA-AA was to restore the original intent of congress. What I was less familiar with were the concrete examples behind why this was so: over and over, people were being deemed “too disabled” to work at their jobs, but “not disabled enough” to be protected under the ADA. So people were being fired, demoted, discriminated against, and then dismissed. Imagine a woman who is fired for being female and then told she’s not “womanly enough” for the ERA to apply to her.

Now the really fascinating bit to me was the speaker’s rundown of why this happened (I’m always so interested in the whys!). Especially as this “why” has a lot to do with perspectives.

The ADA is, again, civil rights legislation. It is not a government service, it is not something one “applies for.” However (at least according to the speaker), when the Equal Employment Opportunity Commission first got a hold of it to create regulations, they came immediately from the perspective of social security and workman’s compensation–government programs that require a person “prove” some “level” of disability–not from the perspective of civil rights.

This lead to bickering over whether an individual was “qualified” rather than seeing the person as a member in a protected group, even to the point of going to people’s houses to make sure they were “disabled enough” at home to qualify as protected in the workplace under the ADA. Imagine a religious discrimination case involving someone going to your home to make sure you had the “right amount” of religious items in your house and following you to make sure you regularly attend religious services! This is especially problematic as the ADA doesn’t just protect people who are disabled, but people who are considered to be disabled (but aren’t actually) or who are associated with someone else who is disabled!

The ADA-AA hopefully has changed this perspective around to make sure that the focus of anti-discrimination cases is on the discrimination rather than the “level of disability” of the person. This is one of many examples of how perspectives and attitudes toward people on the spectrum, or people with disabilities, need to change and modernize to see us not as medical problems but as human beings with human rights.

It will be interesting to watch how regulations and application of the legislation unfold as we move into the future.

For more information on the ADA-AA, see the U.S. Department of Labor’s ADA FAQs. Also, see DBTAC Northwest‘s ADA-AA resources.

[news potpourri tomorrow–still playing catch-up]

Megaconference Special #4 of 6: PAs, Social Skills, and Community

a McCall's step-by-step dress pattern front package. there are six different ladies of approximately the same height and build wearing six different versions of the same mini-dress.  the pattern looks to be from the 1960'sIn the afternoon on the day of Kunc’s keynote, after delivering my own presentation along with my co-presenter Elesia (I’ll get back to that a little perhaps), I attended a panel session about hiring and maintaining a personal assistant. Both the panel, and the audience, consisted primarily of people with physical disabilities, and, in the audience, a few parents of younger children.

On one side of things, the issues surrounding personal assistants are pretty universal: How do I find someone I can trust? How do I protect myself from abuse? How do I find someone who is able to work well with me? How do we maintain good employer / employee boundaries? How do I fire someone without a mess?

On the other side of things, how these issues are resolved is pretty individual. Relying on one’s interview skills to initially determine if someone is trustworthy is only a good idea if one has excellent interview skills. Understanding when one is being taken advantage of requires a certain amount of skill as well–and just because a person doesn’t realize they are being abused or taken advantage of does not mean the abuse isn’t happening.

I often look to the broader disability community, especially to people who have been successfully living a high quality of life for many years, for ideas and information. There is a lot of wisdom out there to draw from, and one should not discard knowledge just because it does not come from “within the autism community” (whatever that means). I have a professor who says, “a systems scientist is a person who looks at birds flocking and fish schooling and realizes they are both the same.” There are many repeat patterns like this between the Autistic community and other disability communities.

And yet–there is also significant divergence in strategies that work for people whose differences fall in a physical rather than mental and/or social realm. We may need different strategies for learning how to hire, who to hire, how to protect ourselves. We may need a panel and audience that is populated more by people who have social or mental differences so that we can learn strategies for hiring and maintaining a personal assistant that work with our specific strengths and around our specific weaknesses. I didn’t end up getting as much out of the personal assistant panel as I hoped for this reason.

However, I do have to say that of all the presentations I attended, I found that panel and that audience the most inclusive, welcoming, and accommodating of any in the whole three days. They made sure my questions were voiced and answered, they gave me time to communicate at my own slow pace, and they took the extra time to make sure we were all understanding.

Sometimes the most valuable thing that I get from cross-disability interactions isn’t the shared information but the shared sense of, yes for real, belonging to a community. And that is, for any human being, an essential and valuable thing.

Megaconference Special #3 of 6: Wherein Norman Kunc Rocks My World

I hate getting up early. The preceding sentence is in fact an understatement. I have, on occasion, gone to extraordinary lengths in order to avoid getting up early. I have never worked a job that involved having to be somewhere before 11 AM because it simply isn’t possible. But when I clicked on keynote speaker Norman Kunc‘s web site and skimmed through it I actually made a conscious decision to get up early and attend Kunc’s keynote.

And I was not the least bit disappointed.

Kunc is a master at assumption busting. He is also an enormously entertaining speaker. And he also detailed four perspectives on disability that have given me a tidy new model and language for deep issues surrounding the interplay between society and disability. Individuals can view disability (or, substitute autism for the word disability, the model works just as well) as–

deviance. The response to which is marginalization, segregation, ostracization, anger, and cruelty.

deficiency. The response to which is an urgency to reform, remediate, assimilate, normalize.

tragedy. The response to which is benevolence (yes, this means “charities” too), overburdened woe-is-me, patronization, and pity.

diversity. The response to which is to value, respect, support, and reciprocity. To innovate instead of remediate.

(I’ll take number 4 pls? k thx!)

I wish I could share the entirety of Kunc’s presentation with y’all. I can’t do that, but, via the marvels of this here Internet technology, I can share a part of what I saw this morning as the following video.

More versions of the video and additional Kunc videos on Kunc’s web site.

Megaconference Special #2 of 6: Self Advocacy and Self Determination

a mural on a free-standing brick wall. blue background with butterflies. and arch with flags from many countries.  in the arch, three hands hold up a book. one hand is white, another black, and a third yellow.  along the bottom there are flowers and the word 'empowerment'The second presentation I attended was on self-advocacy and self-determination. I go on and on quite enough about those topics on a regular basis, and yet keep finding new things as yet unaddressed. Like, the divide between theory and practice.

There’s a really fantastic slide I’m looking at on my handout from this presentation right now. It says:

What can Self-Determination mean for you?

Having the determination (or drive) to do things for yourself.

Setting Personal goals.

Knowing when to ask for help.

Having the courage to dream big and go after your dreams.

Learning who you are, what you want and how to make it happen. (This is a lifelong process.)

I really, really like this slide. It’s vibrant, strong, empowering. Real.

But there are questions too. How do people who have been systematically beaten down (and many of us have been) find that drive? Or feel empowered to have goals beyond “I want my life to stop sucking hugely.” What happens when a person asks for help and no one listens, or no one cares? Where is the courage to be found to dream when one has experienced little more than broken promises? Who or what will help us to make what we want happen? (No one makes their dreams happen all alone.) How is a lifetime of being ignored or condescended to turned around and one encouraged to take the reigns of their own life?

I wonder if younger people who have grown up in a culture of self-advocacy and self-determination will struggle less with these sorts of questions than today’s generations who grew up without much encouragement. Sometimes I think yes. But other times I look at how little we are ever invited to give any input whatsoever into the things that affect our lives most and feel less optimistic. I field questions from social workers like “what do I do when a parent won’t let their child attend their person centered planning meeting because they claim their child can’t understand what’s going on, even though we know the child can” and I feel like the battle for empowerment is still being mostly lost.

What can be done to increase self-advocacy and self-determination, practically, concretely, and for all individuals? What are the key tools of empowerment? How do we break away from those who always do things “for” us but never “with” us to find our own way? What in “the system” or society may still need to change?

Megaconference Special #1 of 6: Violence and Abuse

black and white photo, closeup of a woman's profile, her hand up palm open.  written on her palm are the words 'SILENCE HIDES VIOLENCE.'  she has short, straight, dark hair.We are now into Dora’s Funky Conference Posting Pattern (that is, deeply erratic) as I try to write around my three days attending the Oregon Disability Megaconference. I usually try to arrange for a guest to take over for me when I’m going to be stressing my limits at conferences, but this time I was too busy to even set up a guest. So y’all will have to put up with a change in my usual posting routine. As well posts about what I learned at the conference and nothing else the next three days. But hey–it’s spice to keep things different and interesting? Maybe?

Today was the first day of the conference, and I attended two presentations by Self Advocates as Leaders (full disclosure: I’m a SAAL member and currently sit on their Editorial Board). The first one was on violence and abuse (and how to protect yourself from such), and the second was on self-advocacy and self determination.

The new thing for me to think about from the violence and abuse presentation was an (even) deeper appreciation for the complexity of power imbalances. It is true that people with disabilities are more often abused than others. It is also true that abusers are most typically abusive for reasons of power. It is also true that people in power are more often believed or allowed to stay in power. This puts people like me, who are typically on the lowest rung in any power situation, in a really vulnerable position. Many times people have justified being extremely mean to me by saying I brought it on myself because I did not behave in a socially typical manner. One way to stay out of trouble is to bring someone trusted (best if that person is in a high power position) to any sort of confrontation about abuse or cruelty. This can change the power balance and make it harder for the abusive person to get away with the abuse.

I also really liked this list of “red flags” that someone may become abusive: jealousy, controlling behaviors, isolation, unrealistic expectations, cruelty to animals or children, blames others for problems, history of abusive behaviors. When I think back to the people who have been very mean to me, every one of them has exhibited one or more of the items on that list of “red flags.” Especially controlling behaviors and blames others for problems. I’m going to be more watchful in the future; this list may help me to avoid some of the bad situations I often get into because I am too much of an optimist about people’s capacity for decency.

On my evaluation form for the presentation, I was asked how I planned to share what I learned with others. I answered that I would would blog about what I learned. So there it is. Hope some of these things I learned will be helpful to others too.

Maladaptive vs. Adaptive and “Insistence on Sameness”

multicolored clothespins arranged in a perfect circle. there are 8 clothespins arranged in a smaller perfect eight pointed star at the center.Chicago Tribune has published a pop science piece on UIC study hopes to shed light on autism, ‘insistence on sameness’. The assumption that is made is that some chemical or brain anomaly causes “insistence on sameness.” In other words, that “insistence on sameness” is a maladaptive behavior that may be correctable. The casual qualitative research that happens in one’s head simply from communicating with hundreds of people who share the same experience (i.e. are all on the spectrum) makes me question this assumption, at least for some of us.

The experience of many of us is not that “insistence on sameness” jumps out unbidden and unwanted and makes our lives hard, but that “insistence on sameness” is actually a way of adapting to a confusing and chaotic environment, cueing into volitional action, or compensating for “executive function” difficulties. Routines for some of us are the opposite of unbidden, unwanted, or difficulty-making: they are deliberate, desired, and adaptive. (Which may explain in turn why some of us become unable to function well, or become extremely upset, when our routines are broken.)

Anecdotal stories are not, in themselves, science. They do not “prove” anything other than that a particular person has had a specific experience. However, the starting assumptions or hypothesis that are used in science frequently do come from observation, including observation of people’s first hand accounts of their experiences. If you hear enough autistic adults talking, typing, signing, drawing about how frustrated they are about not being able to get quality health care, then you may develop a more testable hypothesis or assumption for use in a study, like “autistic adults often do not receive quality health care.”

When reading about these studies that assume autistic behavior is maladaptive, I always wonder if the investigators have spent much time asking autistic people about our experiences or why we may have the behavior they are interested in studying.

Understanding our personal reasons for doing things is really important as it filters down to a practical day-to-day level because a therapy or medication that eliminates or suppresses an adaptive behavior could potentially be harmful, not beneficial, to a person (any person!) in the long run.

Obama on Olmstead–“Lip Service?”

close up of a person's mouth, nose, and bottom rims of black plastic glasses. the person has four U.S. pennies in their lips.For the anniversary of the Olmstead decision, Obama issued a press release, declaring this “The Year of Community Living.”

Several specific initiatives were mentioned in the press release, such as more section 8 (housing) vouchers, better interagency communication, and increased funding to independent living centers.

These are all moves in the right direction, yes. But conspicuously absent (still) in the press release is any mention of the core issue of institutional bias in the health care system and the need for significant health care reform in order to actually realize Olmstead. It’s continuing, to me anyway, to be very hard to believe that the administration is truly “getting it.”

Something that may not be very obvious to policy makers is that many of us who rely on “the system” have been lied to and let down so many times now that to eliminate something we care deeply about from all discussion ends up feeling like “the last straw.” The first time a promise is broken, OK, stuff happens, and there are complex issues at play always. But for many of us this is just one more thing in a long line of being ignored and neglected.

We need to see some more aggressive action on core issues in health care reform–time for the administration to “put the money where its mouth is.” Else, “The Year of Community Living” is just another broken promise and more “salt in the wound.”

(Apologies for all the American idioms, but they all seemed unusually appropriate.)