Monthly Archives: May 2009

Self-Advocacy into the Silent Void

picture taken looking down at one's feet--the silhouette of two bare feet in white standing on top of a black holeIn the UK an autistic teen put together a speech to save his school at a local policy meeting–but no one came to hear it. Not even the officials who were invited.

Sometimes my self-advocacy does lead to results. But other times it goes the same place the teen’s speech did–into a silent void of no one caring. Or, at times, not even that far.

I’ve been sitting on the topic for this post for a long time–there’s a long, ranty note in my “ideas” file that spewed out of me during a high point of frustration earlier this year. The note starts out with the text, “infrastructure and power in the way of self-advocacy–” To that I think I’ll add “apathy.”

My ire was inspired by attempts made by numerous people to effectively deal with disability discrimination at my university–attempts that never went anywhere. But I’ve encountered these same issues within social services as well, and so have others. Here are some key issues:

1) How does one organize an effective group action when people are systemically isolated? More specifically, how does one organize an effective protest against disability discrimination when not only there is no way to identify the people who are affected by the discrimination, but the very infrastructure in which one is operating is designed to actively prevent communication from occurring?

2) What is to be done when those few individuals who do have the power to communicate with the people affected by the discrimination (e.g., a program coordinator who controls a private mailing list) are also those perpetrating the discrimination? One can’t ask the program coordinator to send a message, “Hey! Everyone feeling oppressed by the program coordinator, meet in Smith 104 on Tuesday at 3!” That message is not, naturally, going to be sent. No more than the king is going to announce that his serfs would like to call a meeting to depose him.

3) How does one get started when resources to enable effective self-advocacy are in fact the very resources perpetuating the discrimination? For example, what happens when the campus disability resource group is engaging in discriminatory practices? This would be akin to having a defense lawyer who is openly working for the prosecution.

4) And, how does one make their needs known in a system when that system doesn’t care at all about the person’s needs?

Sometimes we end up having to advocate for our right to advocate, to fight for the ability to fight.
And scream into that silent void until we can no longer be ignored.

Cross-Civil Rights on Marriage Discrimination

closeup of two wedding bands.  both are gold and consist of a knot-work of two intertwined ropes which weave behind and in front of each other creating an s-shaped pattern.  the larger ring is lying flat on a plain white surface; the smaller ring has the left edge balanced on top of the larger ring and the right edge on the surface.Bad news for civil rights last week on Prop 8. While coverage of Prop 8 stuff is more topical for the gay rights blog, disability rights activists remind us that this sort of discrimination is a shared issue.

From the article, Disability advocates in San Diego join gay activists to support marriage,

“Until the 1940’s, it was illegal for disabled people to get married,” recalled Linda Kwizdak (pictured [in the original article]) of San Diego Blind Community Services. “People were fearful of disabled people, and now they are very fearful of homosexuals. …I’ve had a lot of arguments with people who voted for Proposition 8 who say that homosexuality is a ‘choice.’ It’s not a choice to be what you are; it’s only a choice to express what you are.”

Kwizdak’s point was echoed by a woman in a wheelchair who spoke to the group inside the clerk’s office and said that her parents had had to fight for her right to attend normal schools instead of being shunted off to separate schools for people with disabilities.

To give full disclosure, the activism experience of my young adulthood was all in the domain of GLBT rights, not in the domain of disability rights. When I was introduced to the disability rights movement decades later after finally finding “my people,” many of the issues were already familiar to me–and not just from the discrimination I’ve gotten from others because of my autism. They were familiar issues from my more active days with the GLBT rights movement.

Even though it’s legal for people with disabilities to marry now, the fight to be seen as a consenting adult capable of marriage is one that many people with developmental disabilities are still battling. Some of the issues are summed up in this short article,

One of the biggest stereotypes of people with developmental disabilities is that we, or some of us, are children forever, have no sexuality, and are not truly adults even when we are of age. This is far from the truth, but leads to many adults being denied the right to marry, have children, or even have friends who haven’t been approved by their guardian.

Connected of course to the large children problem and to sexual consent issues.

It’s great to see members of the disability community supporting the GLBT community when it comes to this shared issue of right to marry. However, it’s also important to remember that just gaining the legal right to marry, as the disability community has, doesn’t alone solve the issue of discrimination. Denial of the right to marry for people with disabilities continues to be an issue in practice. Whether gay or disabled, both the legal right to marry and a change of socio-cultural attitudes together are needed.

“Community for All”

closeup of tools arranged in a circle, from top left and going clockwise, a tweezery thing, hex screw driver, three philips screw drivers in different sizes, two drill bits in different sizes, a ruler with a square on it, several flat pieces of metal (unidentifiable)“Community for All” is the name of the Center for Human Policy‘s online toolkit: resources for supporting community living. From the section “How to Use This Tool Kit”

This tool kit provides:

     * General information to strengthen real community inclusion.
     * Background information for advocates involved in campaigns to close institutions.
     * General information on community services, and resources for finding out more.
     * Material to counter arguments commonly used by pro-institution advocates.
     * Sample position papers, letters to the editor, op-ed pieces, and other materials that can be adapted for your own use.
     * Ideas for organizing and advocacy.
     * Information about policy and governmental action, and strategies that states can use in closing institutions.

The document was created in a collaboration between national disability rights, academic, service, and self advocacy organizations. It succeeds at being both thorough and readable. An excellent source of everything from background information to text to cite in public testimony or anything all else one might want to do with info on the community living issue.

That Which Goes Unseen

a flat, rectangular piece of dark material standing vertically up in green grass. the figure of a man taking a step with to the left with his right elbow bent so his right hand is up with the palm facing out has been cut into the rectangle.  trees can be seen through the man-shaped opening, as well as behind the rectangle in the background.What is seen of a person may only be a small fragment of their lives, and yet others are often eager to judge the whole of a life based on that small fragment. An autistic person (or any person) who may appear one way in one context, may not really be that way in another context. Being skilled with, for example, marketing, does not mean one is equally skilled at something else like math or housekeeping. This is particularly true for those of us who have extremely uneven or unconventional skills. And mistaking the piece of the picture for the whole of the picture can, for some of us, lead to catastrophic results.

You Have It So Good is a seminal essay on the issue of being judged “so high functioning” based on assumptions drawn from a small number of publicly seen items (e.g., driving) while at the same time having survival-level concerns (eating) go so unaddressed that one’s life ends up in danger (starvation).

From Shapiro’s No Pity in a section on T.J. Monroe,

The public Monroe is the confident and effective activist who gets invited to the White House and is a commanding presence running the People First convention.

Monroe’s private life is more troubled. There are bills past due, an unkept apartment, a gnawing loneliness over scarce friends and lost family. Megan wrote of social workers from Connecticut’s Department of Mental Retardation visiting Monroe’s Hartford home to “dig him out” of trash and piles of mail scattered around his three-room apartment.

This is not about pity. It is about a critical misunderstanding of the needs and abilities of developmentally disabled individuals who achieve socially or culturally recognized competency in some publicly visible way.

This is also not about hurt feelings. It is about the critical issue of how a faulty assumption of ability can lead a person to be denied services or supports they need to survive.

As stated in You Have It So Good, giving up everything in order to get necessary support is not an acceptable option. No one should be forced to sacrifice their life, their health, and everything they have achieved or could achieve in order to get relatively simple survival level support.

Take care next time you hear someone say, “that person can’t have real problems; they are too good at ______ for a person with real problems.”

There may be a lot that goes unseen.

Study on Speech Processing

[Another time it seems Kristina and I hooked on the same article. This seemed different enough from what Kristina wrote to still run though. I hope!]

a green field surrounds a round opening in the center. inside the opening is an x-ray of a brain. lines are drawn from areas of the brain to the outer edge of the green field.  each is labeled with letters. a number 3 is at the bottom.I would take the title of the article “Scientists Reaching Consensus On How Brain Processes Speech” with a warehouse full of salt, but the core idea seems to be that areas of the brain which process speech are starting to be identified (if one can believe the science reporting). The model presented in the article is a “two parallel pathway” idea,

These pathways are dubbed the “what” and “where” streams and are roughly analogous to how the brain processes sight, but are located in different regions, says Rauschecker, a professor in the department of physiology and biophysics and a member of the Georgetown Institute for Cognitive and Computational Sciences.

Both pathways begin with the processing of signals in the auditory cortex, located inside a deep fissure on the side of the brain underneath the temples – the so-called “temporal lobe.” Information processed by the “what” pathway then flows forward along the outside of the temporal lobe, and the job of that pathway is to recognize complex auditory signals, which include communication sounds and their meaning (semantics). The “where” pathway is mostly in the parietal lobe, above the temporal lobe, and it processes spatial aspects of a sound – its location and its motion in space – but is also involved in providing feedback during the act of speaking.

If processing speech involves different brainstuffs (e.g., auditory cortex) than processing, for example, writing (or other visually based) or felt language (e.g., Braille), perhaps this suggests why some autistic people (myself included) do significantly better with communication in a non-speech/hearing medium. Speech is not communication–it is simply one way that communication can occur. Speech is also not language, although language can be (but does not have to be) spoken.

Developmentally Disabled Patients Denied Care for Treatable Illness

closeup of a person's hand in a hospital bed, the hand has an IV in it. the IV is taped down. there is nothing attached into the IV, the hole where a tube would go is emptyIn Wisconsin, a hospital is sued over denying care to patients with developmental disabilities who had treatable illnesses. One patient was denied food after asking for it, and another, who was unable to speak (not so sure about whether he could communicate though), was denied antibiotics and literally left to die, which he did–at age 13. In both cases assumptions about “quality of life” seem to have been made–and not by the individual who was being denied the care.

Not Dead Yet covered the story also, and links to A Statement of Common Principles on Life-Sustaining Care and Treatment of People with Disabilities from Syracuse University’s Center on Human Policy. From that document,

In fulfillment of fundamental rights and in recognition of the historical treatment of people with disabilities in society:

* People with disabilities are entitled to exercise their rights to life-sustaining care and treatment and to self-determination and autonomy.

* Absent clear and convincing evidence of the desires of people with disabilities to decline life-sustaining care or treatment, such care and treatment should not be withheld or withdrawn unless death is genuinely imminent and the care or treatment is objectively futile and would only prolong the dying process.

* For the limited number of people who have lifelong cognitive disabilities and who have never had the ability to exercise self-determination regarding life-sustaining care and treatment, such care and treatment should not be withheld or withdrawn unless death is genuinely imminent and the care or treatment is objectively futile and would only prolong the dying process.

* When doubt exists as to whether to provide life-sustaining care and treatment a presumption must always be made in favor of providing such care and treatment.

The idea that one might be denied care (even when one asks for it!) for treatable illnesses simply because one is developmentally disabled is haunting. Could this happen to me? Could it happen to you? How do we keep it from happening to anyone? Hopefully there will be a useful outcome from the lawsuit.


in the foreground lush grasses and ferns with a narrow dirt footpath leading through the center. in the mid-ground, the silhouette of thick trees, with an opening between them to let the path through. in the background, a the disc of the sun shines through mist in the center of the opening between the trees.From the Center for Self-Determination‘s home page:

Principles of Self-Determination

The opportunity to choose where and with whom one lives as well as how one organizes all important aspects of one’s life with freely chosen assistance as needed

The ability to control some targeted amount of public dollars

The ability to organize that support in ways that are unique to the individual

The obligation to use public dollars wisely and to contribute to one’s community

The recognition that individuals with disabilities themselves must be a major part of the redesign of the human service system of long term care

There are a lot more resources on self-determination on the the web site, and a lot more I could say, but I’m not wanting to dilute the main message, the Principles listed above, with too much of my own blah blah today. Sometimes the most meaning comes in just a few words.

Humor, Taboo, and Acceptance

a brightly lit Lisa Simpson plastic figurine casting a long dark shadow across a wood floor and white wall.  the figurine has both its hands up, its mouth open in an 'o', and very wide eyes, as though surprisedBack when it was fresh out in the first run theatres, I remember a bit of press on the movie Good Morning, Vietnam that stated something like, “The humor of this movie is a good sign we’re starting to accept what happened with Vietnam and deal with it.” The idea being that when something is a fresh wound to some group of people or makes the majority of people feel very uncomfortable or upset, it’s taboo to publicly place it in a humorous context. When something is accepted (even if it’s not liked or wasn’t a good thing) it then becomes acceptable, or even healing, to place it in a humorous context. Some things never become acceptable to joke about (e.g., genocide) and that’s perhaps as it should be. So what about this story Is “The Simpsons” defending disability rights or making fun?

The three cool girls, all named Caitlyn, (with different spellings), say: “Do you even know how lame you are?”

Lisa responds: ” I should warn you by using the term ‘lame,’ you are violating the Americans with Disabilities Act.

The Caitlyns: “Eew, that makes you even lamer.”

The original post links back to this essay from The Ragged Edge, Lame, lame, lame which discusses how disability-related words invariably mean something bad when used as metaphors–and that’s something worth complaining about. The original post then asks,

“So is “The Simpsons” bit agreeing with this sentiment [that it’s wrong to use disability metaphors to mean something bad] or just making fun of concerns about language?”

So. The Simpsons, Lisa, taboo, and acceptance: Is the joke in poor taste? Is the joke funny? Are we able to laugh, or is this topic too sensitive? Jokes about “the R word” are taboo and disrespectful at this time, what about “the L word?” Or the “A” word? Is it OK to joke about autism? Is it OK for me to joke about my autism but not about someone else’s autism? Is it OK for a non-autistic person to joke about autism? More to the point, is it OK for Lisa Simpson to joke about autism? 😉

Stranded and Ignored

an extreme perspective of a wooden city bench taken at a 45 degree angle, so that the bench appears very long and front of the bench is sidewalk and a fence. behind the bench is lawn and in the distance a few roofs.  there are some bare trees in the distance on both sides.  everything is dusted with a light coating of snow and the sky is gray, the same color as the snow. a single figure sits at the far end of the bench huddled over in a hoodie, sitting on the top edge of the bench with their feet on the seatIn Chicago, bus drivers are passing disabled passengers by. Nine hundred and thirty ADA complaints were filed from 2005 – 2008. In some cases the bus drivers just didn’t bother to stop or closed the doors when it was the disabled person’s turn. People have been left out in the cold (literally) for hours.

I have been ignored by bus drivers before, but no more often than most people. Because I don’t use a mobility device, I’ve never had to deal with what the Chicago passengers report. However, being stranded and ignored because one is considered “too much trouble” is a more universal issue that affects everyone with a disability unfortunately equally, just not always in the same situation.

The situation of waiting for service from a sales clerk, help desk person, receptionist, or civil employee and having everyone in the room (and a bunch of people on the phone!) assisted before me, regardless of when I showed up to wait, happens all too often. People just don’t want to engage with someone who is slow to express themselves, who looks or sounds different, or who doesn’t give off “the right signals” socially. People often just don’t want to be bothered.

However, like the Chicago bus situation, being passed up because someone doesn’t want to take the time to engage is downright discrimination. One indirect benefit of more people with disabilities living within the community might be (first) more effective protest against the discrimination, and (second) more tolerance and knowledge on the part of service workers like bus drivers, sales clerks, and receptionists. We need to make it harder for people to strand and ignore us than to treat us properly.

Collapsing the Spectrum–And Expanding it Again: DSM Considerations

a square glass-top case, in the center is an oval with the word 'BEETLES' and a large among of unreadable text in it.  the rest of the box is filled with a large amount (like more than 25) of different kinds of beetles in all shapes and sizes.  all of the beetles have been positioned so that they face in toward the oval with the text.The DSM-V Neurodevelopmental Disorders Workgroup has posted a report from their April meeting with some of their considerations for changes to the Pervasive Developmental Disorders section. No final decisions have been made yet according to the report, but the recommendations, if taken, do present a departure from current criteria–and language.

The first two items from the report:

1) The Workgroup is considering a change in DSM-V that would replace the Pervasive Developmental Disorder (PDD) category with the title “Autism Spectrum Disorders” (ASD). The change would utilize a single diagnosis for the disorders currently entitled: Autism, PDD-NOS and Asperger disorder…

2) To better reflect the symptomatology and clinical presentation of ASD, changing the three current symptom domains (social deficits, communication deficits and fixated interests/repetitive behaviors) to two (social communication deficits and fixated interests and repetitive behaviors) is also being considered.

So, only one ASD, not three PDDs. Only two categories for criteria, not three.

The third recommendation is this:

3) Symptom severity for ASD could be defined along a continuum that includes normal traits, subclinical symptoms and three different severity levels for the disorder.

The report then goes on to give an example of one possible model for this continuum.

It’s good that some of the deep issues with the current criteria (e.g., from the report “Separation of ASD from typical development is reliable and valid, while separation of disorders within the spectrum is variable and inconsistent.”) are being addressed with the simplification made in points 1) and 2). But is it possible that the same problems will just resurface again from point 3)? In other words, while separation of ASD from typical development may be reliable and valid, mightn’t separations of severity within that spectrum be variable and inconsistent? Thinking here especially of the high degree of variability in “severity” that often exists across an individual’s life span, depending on age, available support, and a huge number of other possible factors.

Also, what will such a classification system do to the sorts of opportunities that are made available to individuals? How to stay away from the “self fulfilling prophesy” problem of because a person is given a “more severe” label, others to have low expectations of them, and therefore they are not given any opportunity or encouragement to exceed those expectations? Or, alternately, how to stay away from the issue that a “milder” label could prevent a person from accessing support they need for survival?

So many questions that directly effect so many of our lives from a bunch of words thrown together by a bunch of people few of us will ever meet–

What do you think of these three points being considered for the new version of the DSM?