September 14, 2012

Dream-Maker’s Magic

Posted in Disability, Fantasy, Safekeepers, Teen/Young Adult tagged at 11:39 am by caelesti

The Dream-Maker’s Magic by Sharon Shinn ¬†

Safekeeper’s Trilogy: Bk 3

Another beautifully told coming-of-age fantasy from Sharon Shinn! Dream-Maker’s Magic focuses on the evolving friendship of two misfits- Kellen, whose mother insists she was born a boy, has been raised as such. She presents herself as either gender depending on her mood or the situation. ¬†Gryffin is a physically handicapped boy who is very smart and determined to succeed. The two go to school and then work together in an inn/restaurant. I like how the author depicts the change of the seasons and the seemingly simple yet multi-layered life of a small town. The plot ended up moving in ways I did not expect- so you may be in for some interesting surprises.
The exploration of both gender identity and disability was also very intelligently and sensitively done- it makes you think without being politically preachy.

This the 3rd in a trilogy of loosely connected books set in the same unnamed kingdom- the others being the Safe-keeper’s Secret and the Truth-Teller’s Tale. I thought this was the best of the three- I still recommend reading them in order though.

Read in March 2009

August 14, 2006

Mentoring

Posted in Disability at 10:38 pm by caelesti

It’s funny- I thought I’d be writing _more_ during the summer, rather than less. But I want to be outside more, During the school year, I’m inside more, studying and in front of the computer- so I guess I’m more prone to write.

Anyhow- I did participate in several things relevant to this blog- I worked at Camp Discovery, which is a summer camp for Asperger’s/HFA kids for a week. It is at a beautiful location Courage North in Lake George, Minnesota. I have been doing this for about 4 or 5 years now- I’m not even sure how long! Each cabin has 8 kids, 3 regular counselors that are there all summer, a mentor (that would be me) a couple support staff who rotate watch duty throughout the day and night, and a “Cabin Support Person” (CSP) They used to call the CSP’s Autism Consultants, and the Mentors “Counselors with Autism”.

I love working there! The kids are amazing, and the camp is one of the places which I feel most at home. This year our campers were the most well-behaved I’d ever had! Granted, they were older- 14- 16 year old girls- but there were really very few problems. A few minor incidents, but no major tantrums!

Once I was a camper myself- at age 15 though that was the only time I went. When I first came I would barely even admit I was autistic- but I made great friends, I had an awesome time with the activities. I learned that I wasn’t alone- there were other people like me, there was nothing wrong with us, we had nothing to be ashamed of, and in fact, a lot to be proud of. And perhaps most importantly, for the first time I met autistic adults. Finally, I had someone I could look up to, who I could actually relate to. Who really understood where I was coming from.
It is crucial for young people with disabilities to have older, successful role models like themselves. Increasingly, as more of us go to college, I see more of us become both regular and special ed teachers. This is excellent- hopefully a new generation will grow up knowing that we can succeed. Kids with disabilities will not have to feel like freaks that are trapped in a perpetual childhood.

June 23, 2006

U.S./U.K. Disability Language Differences

Posted in Disability at 10:25 pm by caelesti

While I’ve long been aware of differences in word usage between my native land, the United States and Britain, I had not realized there were differences in disability terminology. Disablism, as discussed in the last post is a British term, the equivalent to the American “ableism”. As Goldfish explains in a guide to disability language– “disabled people” is preferred in the U.K. while we Yanks say “people with disabilities” or PWDs for short. (I’m not too picky about which one is used)

An even more important language difference to note is the usage of the term “learning disability”. Apparently, in the UK, learning disability means mentally retarded or significantly intellectually challenged, whereas in the U.S. (and Canada, presumably) in refers to a broader range of cognitive/processing differences which occur in people with a variety of levels of intelligence(s) and abilities. This seems a bit ironic, as learning disabled people are all too often assumed to be not very smart.

One thing I love about the Net is the increased opportunities to talk with people from around the world, and work together. There seem to be a lot of autism sites and organizations based in Britain, and I have had the pleasure to talk with autistic folks from Britain, Sweden, Ireland, Australia and many other places.

For more on American vs. British English, check out the Seperated By a Common Language blog I just discovered. I’d also be curious to see info on English in Australia, New Zealand and other countries.

May 2, 2006

Dis/ableism

Posted in Disability at 3:41 am by caelesti

Many dictionaries don’t even recognize the word classism, let alone the somewhat more obscure term “ableism”. I’ve never heard the term “disablism” used before but I realized when thinking about this that a more apt term would be dis/ableism. Other “isms” that describe systems of oppression like racism and sexism- refer to a specific category that everyone is supposed to have. When filling out a form, you check boxes for race, sex, etc. but there isn’t a disability box because not everyone in considered to have one.

The interesting thing is, unlike one’s race and sex, which generally doesn’t change from birth, dis/ability status can, and often does change throughout one’s life. Through accident, chance or simply the natural decline of the body with age, many people develop disabilities of some kind. Likewise, one is born with a disability can sometimes be cured or is treated so that they are seen as less disabled. Dis/ability thus is interplay between being what is percieved as a “normal” able bodied and minded person and a person with a body/mind that isn’t quite up to the standard.
I think part of dis/ableism stems from the fear of becoming or being disabled which people connect to fear of weakness, vulnerability, old age and death. Keeping people with disabilities out of sight means people don’t have to be confronted with their vulnerabilities. I wonder if we had a broader concept of strength, and a more positive view of the elderly and of death, that that would affect our view of disability.

People with disabilities also challenge the very perceptions of what it means to be human. Humanity is defined by the ability to walk upright, speak and think in a certain way. Because of this disabled people are defined as being outside of humanity, or only partially human. We need a broader view of humanity- we have been struggling to include people of different ethnicities, nationalities, genders etc. in our concept of humanity and we need to extend that to include the concept that people naturally have different kinds of minds and bodies that work differently. The problem is our world is designed to include only people with certain kinds of minds and bodies. Let’s envision a world where all people can live to their potential, live full lives and participate in whatever aspect of life they wish to. Then, let’s find practical ways of making that vision a reality.

April 18, 2006

Blog Against (Dis)ableism Day

Posted in Disability at 11:28 pm by caelesti

Blog Against Disablism Day


Today I visited the Ragged Edge, and discovered that someone had proposed having Blog against Disablism Day on May 1st. The idea is to get as many people as possible to blog on the subject of disablism- discrimination/oppression of people with disabilities. Or conversely, _for_ disability rights. Go to the above site, and leave a comment if you’d like to participate. Then on May 1st, he will link to the posts on the various blogs. So spread the word to as many pro-disability bloggers as you can. (You do not have to be disabled yourself to participate) I found it interesting that May 1st was chosen, given the labor history connected with it. Probably intentional. I may blog on that as well, come May Day.

“Wrongful Birth”

Posted in Disability at 5:55 am by caelesti

A while back, I read a horrifying article in the New York Times. A woman gave birth to a disabled child- and because the doctor did not suggest she get prenatal testing, she sued him for “wrongful birth”. That is, if she had known the child would be disabled, she would’ve aborted it, but because she didn’t get that opportunity she sued the doctor for negligence, essentially. It’s not clear from the article whether the couple won the case, but it brings to mind the larger issue of selective abortion. It’s probably good that the child in question likely won’t have the mental ability to figure out one day, in an old newspaper article when doing research at the library, that his parents wish he’d never been born. His siblings may well, however.

I am extremely concerned with this issue and how it affects the future of disabled communities. We can now detect before birth many disorders and conditions- one of the most common being Down’s Syndrome. Unfortunately, often the information parents get is rather limited or negative- many disabilities can range in severity, and the parents fear the worst. Every child is an unknown, but a potentially disabled child is even more of an unknown. It would be nice if parents had the option of connecting with the people living with the condition in question before they made their decision, so they could get a realistic picture of what their child’s life might be like. There is a lot more to say on this.


March 24, 2006

More than Just Quirks?

Posted in Disability at 6:01 am by caelesti

Today I met with some friends to discuss problems that have been going on in a student group I’m involved with. Daria*, an older woman who acts as an advisor to the group, was expressing concerns over the actions and behavior of our president. At one point she asked me “Do you think Kelly might have a social disorder? You’re pretty good friends with her, and known her for quite some time- have you ever noticed- something odd about how she relates to other people, her body language, the way she talks? Has she ever been tested for any kind of disorder?” (Well, that’s roughly what she said- I can’t remember exactly what traits she ticked off) I’ve made some amateur disagnostic speculations in my time- (haven’t we all?) but this is one person I’d never considered.

Well, she does have some unusual mannerisms- but I just thought they were her individual quirks. (They’re more than just quirks, insisted Daria) Her brother has ADD- so it’s possible should could have some of that as well, or something similar. It’s pretty common after all. Yeah, she does seem kinda ADD, come to think of it- rather fidgety. Well, everyone’s a little ADD anyways- it’s only when it causes them problems that it’s worth dealing with. So I wasn’t going to bring this up with Kelly on the basis of vaguely defined quirks that don’t seem to be causing any problems in the rest of her life.

(*- Names changed to protect anonymity)

I think it’s good to examine the reasons _why_ we do our amateur diagnoses. Are we doing it out of concern for the person, as a way to excuse their behavior- or our behavior toward them. Sometimes people are irresponsible, behave badly, have bad habits- just because- or because there’s something going on beneath the surface- some unique neurology that hasn’t been identified.

March 16, 2006

Applied Behavior Analysis

Posted in Autism/Asperger's at 3:31 am by caelesti

I thought I would make a series of posts on terms used in the context of autism, my thoughts/experiences on them, and links to resources if possible.

In my last post, I mentioned ABA, and Dad asked me what it was. ABA stands for Applied Behavior Analysis which “is the design, implementation, and evaluation of systematic environmental modifications for the purpose of producing socially significant improvements in and understanding of human behavior based on the principles of behavior identified through the experimental analysis of behavior. It includes the identification of functional relationships between behavior and environments”

From Wikipedia
It is a therapy that is commonly used for children with autism. It’s rather intensive, and can cost a lot of money, because it takes a lot of one-on-one therapy with an specially trained ABA professional, from what I’ve heard. Though it’s possible some parents do it themselves. Not sure. A lot of people in the autistic rights movement/autistic community are very critical of it, honestly I don’t know enough about it to really have an educated opinion.

But here’s a critique of it that’s been circulating the online scene and creating a buzz:

The Misbehaviour of Behaviourists

Also, read about the whole “No Autistics Allowed” controversy as well- basically Autism Society of Canada is not allowing autistics to have a say in the organization, and Michelle Dawson is arguing against it.

March 14, 2006

Social Skills vs. Social Conformity

Posted in Autism/Asperger's at 3:04 am by caelesti

Lately I’ve been reading autism blogs- and one thought that has struck me is how professionals & parents of autistic kids confuse the issue of social skills with conformity. Case in point-Kit Weintraub
“Ms. Weintraub’s son, Nicholas, has benefited greatly from A.B.A., she said, and she is unapologetic about wanting to remove his remaining quirks, like his stilted manner of speaking and his wanting to be Mickey Mouse for Halloween when other 8-year-olds want to be Frodo from “The Lord of the Rings.”

Now I can understand, and support helping autistic folks get help in learning better social skills. We all need them to get along with others and survive in the world. But you can have good or passable social skills and still be “different” or eccentric. People might make fun of you, but that’s their problem not yours. My parents, while helping me improve social skills as a kid, appreciated my uniqueness. But then they are both rather eccentric as well- as are many parents of autistics- it has to come from somewhere doesn’t it? Unfortunately, other autistics are stuck with parents who want not just a kid that can function in a neurotypical society- but one who totally conforms to it.
The Autism Society really needs to discourage this- hmm- we need a national “It’s Ok to be Eccentric” campaign.
Ref: How About Not Curing Us