US Reluctance to Sign Treaty on Disabilities is Painful, Puzzling

http://seattletimes.nwsource.com/html/opinion/2008015343_disabop25.html

"A treaty that takes effect this month could benefit one quarter of humanity: the 650 million people, as well as their families, who live with disabilities. The U.N. International Treaty on the Rights of People with Disabilities is also the first international treaty that guarantees the rights of such people to equality and self-determination.

People with disabilities are the world's largest minority, yet the United Nations reports that only 45 countries have disability-rights laws.

The U.S. has not signed the treaty, either, but it should. ...

In far too many nations, people with disabilities lack rights to vote, work, marry, own property, sign contracts or retain custody of their children. Ninety percent of children with disabilities in less-developed nations receive no education. ...

The treaty enshrines important principles that Americans hold dear: nondiscrimination, equal protection under the law and the right to autonomy and independent living in integrated, community settings. ...

We know that our society is richer for — and that everyone benefits from — including people with disabilities in schools, housing, workplaces, voting booths, houses of worship, public accommodations and every other sphere of life. ..."

Cultural Development & Disability

As I said in a post last week, I'm in summer school. The class I'm taking is adolescent psyc. As an aside, I just got my midterm back and she came over to me and told me that I got the most multiple choice right of anyone in the class Today's topic was cultural development in adolescence. Or should I say ethnic development. You have know idea how much this makes my blood boil (well maybe you do because you all live this too). We're a culture too and people are going to get that even if I have to cram it down their throats. I doubt there's research on the topic, so I raised my hand incessently today.

We were focusing mostly on Helmes' stages of ethnic identity and it was amazing how well it suited us and our culture. Someone brought up the difference between light colored and dark colored African Americans. Lighter skined ones are "better." I'd like to propose a comparison between African Americans and people with physical disabilities.

As I wrote in a different post last week, I've been doing a lot of thinking about my powerchair. I'm very anti-chair and that's not helping me. I keep asking myself if I would ever look down on somebody else who couldn't walk at all. I don't even have to think. The answer is of course not. So why do I insist on walking so much that it's so bad it's affecting my grades? Well it comes to me after whoever said that like a bolt of lightning. People who walk are smarter of course. Now really I do see the falicy in that, but this belief is so deep rooted that I picked up on it in pre-school. When I was little I didn't want to be within 500ft of a kid in a chair. I wasn't like them. I could walk. God forbid anyone thought I was like them. I'm not retarded. So now I'm 23 and "people who walk better are smarter" seems to have been burned in the back of my head.

So lighter skined blacks are better and people who walk are smarter. Anyone have an oppinion on that?

ATTN Disaboomers: S. PA-NOVA

If someone could please explain to me how I always manage to show up to my shrink appts early but I'm usually 20mins or so late to class, that'd be great. So anyway, last week I conned a friend of mine into driving me to my appt to save the cab $ and he got me there 15mins early. Usually I just rock out to my ipod while I'm waiting, but I happened to glance over at the table next to me where a copy of the June issue of Baltimore Magazine was sitting. The cover article caught my attn--Baltimore's best salons. Turns out that wasn't so interesting, but Baltimore Blogged was. The article featured some popular local bloggers and the site Blogtimore, Hon. The site is a blog aggregator, meaning that once you give them your RSS feed (for example http://www.disaboom.com/Blogs/cherylberyl/rss.aspx) the site will list your content so that it may possibly peak the interest of other local bloggers. I don't know how much extra expoure this will get me, I just got listed yesterday. As long as you live somewhere between S. PA and NOVA the site will list you. Please be nice and put CherylBeryl in the referred by box.

In other news, Saturday I went to Giant (the Giant in DC, MD, VA, & DE, not the one in PA, they're different) to get some perscriptions and found out they're now giving back $0.05 for every bag you bring. Yes you say, "but it's only $0.05, who cares?" Well if you bring in 5 bags you get back a quarter. The economy is bad and gas is up (even if you don't drive, cab prices went up too ) It can be an old plastic bag from Giant, a paper bag, a dept store bag, a tote, anything. I got lucky in that I always buy a lot of frozen food so when I go in the summer I always bring one of those reusable insulated bags. Otherwise while I wait for a cab outside for 20mins in 90 degrees things would get ugly. If you use a scooter and have a basket in the front, tell them to put you're stuff in there loose and make them count it. If you use a chair, hand them your backpack. Heck, I may just bring a backpack next time. I'm sure I could find a use for an extra $0.05 somewhere...

What's That You Say?!?! You Find Your Chair Empowering???

[picture discription: a bad picture of me in my Jazzy powerchair from Feb 2006]

That's right ladies and gentleman. Me of all people, the person who walks around so much that she's so tired she falls asleep on the floor with the lights on and walks around close to tears from exhaustion. I like my powerchair. Today. We'll see about tomorrow. As I said in an email this morning, these last 3 weeks I've felt like some sort of foreign being has invaded my body. I've been in a great mood, I'm "popular" all of a sudden, and low and behold, I like the chair. Today. Things will probably change if/when I exit the alternate universe I'm in currently.

Why do I like the chair all of a sudden? Because I'm BORED. I don't have a working TV or computer (still) and right now I live alone. You see, in addition to being a chronic chair hater, I've also been absolutely convinced for years that I'm incapable of finding ways of entertaining myself. Enter TV and computer. That I don't have anymore. Summer is light on my schedule. Some days (like weekends) I may have 6 straight hrs to fill. What am I going to do? Stare at the wall for 6hrs? I've been a fan of staring at blank walls for years. I do so on a daily basis. But not for 6hrs. I absolutely draw the line at an hr and a half. On top of everything else, the gym has been closed for repairs since May 20-something and every week I check to see if it's open and they say, "Try early next week." I'm in much need of a good 2 mi run.

What have I been doing? Well a few weeks ago I went to the supermarket about a mile down the road 3 times in a week. I ventured into the public library maybe 1/2 mi down the street (as opposed to sticking to the school library) and read part of one of Marlee Matlin's books. Unfortunately they didn't have Moving Violations. I went to the zoo with friends. That time since a friend with CP came we split and half the time she used her scooter and I used my crutches and then we switched. So it wasn't actually my chair, but it counts. The day before I went to the mall (across the street from the supermarket) and searched and searched for a pair of sunglasses that weren't huge. Don't understand that trend. I can usually walk the mall, but I had to cover the whole thing 3X to find them (then I lost them 2 days ago and had to get another pair ). I cut through Barnes & Noble to get to the mall because it's safer, so I've been there too. While I was still out that day, a friend called and asked if I wanted to go with her to someplace "on the strip." I said "No prob. I'm in my chair already there. Call me when you're leaving. No need to get me. I'll meet you at the place." That felt cool. Afterwards we went 2 stores over to have dinner, and then I took the chair (and myself) home. I had a meeting on Fri and instead of wasting my $ on cab fare, guess what I did? I took the chair. It was a block further than the mall and thankfully in a completely accessible building.

Not in the chair, I've gone up to Wegmans for dinner with that same friend (LOVE that place) and down to the inner harbor with her to hit up a bar. Afterwards we went into Little Italy. I've gone to a pizza place with another friend, and then to his place for a bit of TV (because I can't never watch TV and of course we couldn't go to my place). On Father's Day I went to Harbor East with the fam for a late brunch.

My therapist said last week that she thinks bored suits me. I can't argue with her. I feel exhausted just reading that. Except that for once, even though I still walk about 1.5 mi to/from class 2X/week, I'm not tired. I'm committing suicide just by writing this. I'm never going to live this down. I may have just given up my right to fight with people. Except that well, I'm still worried about getting fat and losing muscle mass, because the more I use the chair, the more I want to use the chair. It's so comfortable and much faster than I am. There's a lot of appeal to that. It's a very dangerous slippery slope, that I'm afraid I may already be on.

But why am I really empowered by the chair? A close friend called yesterday afternoon. He really needed me. It was a rough day for him. But he also needed to be out. He wanted to go to the mall. "How long will it take you to finish what you're doing and cab it?" he asked. "Well if we're going there, then I'm taking my chair and it just so happens that I'm already in it. I'll call you when I'm leaving campus and I'll be there in 20mins." We went to the mall, cut through Barnes & Noble, the art store, Hudson Trail, and Trader Joe's. I'm empowered by the chair because I was able to drop what I was doing almost at a moments notice and be there for somebody that needed me. That's something I couldn't do without the chair. And I wouldn't trade that for anything.

Damn chair... It's just supposed to be pure evil.

The Summer of Stares: Part III

No, you're not crazy if you don't remember me posting part I or II, there aren't such posts. This post is titled part III because this is the 3rd such summer in a row. I've been in summer school for 6 out of the last 8 summers. I'm not allowed to work and I need to be occupied. If I wasn't in summer school I don't know what I'd do with myself. this is the 3rd summer because it is the 3rd summer in summer school here.

Why do I call these summers "the summers of stares?" Well, because I get stared at several times a day 5 days a week. Honestly, it's gotten old. This campus has at least 4 camps that run throughout the summer. Maybe more. And that's not including summer cheerleading camp for high schoolers and such. We're infested with kids. Kids who like to stare at me like I'm some sort of side show circus freak.

You know it's not so bad when adults or big kids stare. They don't stare. They glance. It's just an ever so slight glance in my direction and then they're on they're way. In fact, I can't even prove that they're looking at me because I look funny. I'm hard on my feet when I walk and I clip my keys to the outside of my purse. Because of the way that I walk, they make a lot of noise. They may just be wondering what's making the racket. When I'm in the chair speeding along at 6mph, not only are they wondering what that noise is, but they realize they need to get out of the way. I don't like when people don't get out of the way. Thankfully that's not often. I love going fast. It's the only time when I'm faster then everybody else and I doubt the thrill of that is ever going to go away.

But back to kids. Kids stare. The turn their head very sharply 90 degrees in my direction and lock their gaze on me while still walking straight in the direction they're going in. As an aside, I don't know how they can do that. I can't. It might be somewhat dangerous. It's not so bad in the grocery store or in the mall. Their parents are there and they don't let them stare all that long. Also it's probably only one kid, and since I spend most of my time on campus or in my friends' apartment and not in public places (poor college student, can't afford to) it's not so often. But camp counselors have too many kids to look after. They're not paying any attention to me or the fact that one kid in their group is staring at me. As I said, right now we're infested with kids. It's one kid probably yes, but that's one kid per group. You have no idea how many groups cross my path within the course of a day.

School ended sometime last week so all the camps started Monday. As I was walking to the library to use the computer (still don't have my new one yet). I got my first stare of the summer. And I got really upset. Part of me can't understand why I'm so upset. I've grown up with people staring at me. It's just a part of who I am, the same as having blond hair. But this summer is different for me. This summer I'm bipolar. I'm just dealing with so much right now (although I'm happy to say I'm improving very nicely) that I don't need to deal with this on top of everything else. I just don't need to be stared at like I'm a circus freak M-F. Maybe I could get a neon sign to float over my head everywhere I go that points straight at me and reads simply "not a circus freak." Although, I think that might backfire. I think I'd get more stares with a gigantic neon sign over my head.

It's just a damn shame that these camps don't have inclusion programs. I went to camp from when I was 3 to when I was 16. The vast majority of the camps that I went to had inclusion programs. Even the camp I went to in the late 80s. I started there in '88. It's been 20 years. C'mon people. Get with the program. I even started an inclusion program at one camp. The director wanted to start an inclusion program and knew me, so the summer before (when I was 9) she used me as her guinea pig. I loved that camp and I loved the drama day camp I went to before that. I didn't go to there for the inclusion program. I went there because I simply loved the camps. It just so happens that no one stared at me there. That's a good thing.

Those kids are missing out on so much. I worked at a camp one summer (the camp I went to at 3) which still has an inclusion program. There was a kid in my group with aspergers syndrome, a kid with a mild LD, a kid with a rare genetic disorder who had his own nurse come to camp with him because he was tube fed and such, and a girl with CP that was so severe that she was in a chair, non-verbal, had to be fed, and was 13 I think and still in diapers. In other groups of the same age range there was a kid with CP in a powerchair who could talk and feed himself, a kid deathly allergic to peanuts (I consider that a disability), a kid in a chair who was recovering from some kind of orthopedic surgery, and another kid who I think has CP who was in a chair, walked sometimes, made noises but not words, had to be fed, but was potty trained I believe, and had several seizures throughout the summer. The AB kids wanted to hang out with the disabled kids. They were very concerned when the girl had seizures, and one kid who was a great swimmer actually begged to be placed in the lower swim group so he could be with the kid with the genetic disorder who was his best friend. There was no staring at that camp. The AB kids never thought twice about the disabled kids being there. It was camp. It was just the way things were, the same as me having blond hair.

Maybe that's why I'm so upset about being stared at? Because it's 2008 and it's not supposed to be this way anymore.

Call For Papers--Just Found Out But Deadline's THIS Friday

CALL FOR PAPERS: ASSOCIATION OF UNIVERSITY CENTERS ON DISABILITIES ANNUAL MEETING

http://www.aucd.org/template/index.cfm Deadline: June 20, 2008

Proposals from all segments of the AUCD network and its partners are welcome, including individuals with disabilities and their family members, faculty, researchers, program directors and staff, graduate students, policymakers, administrators, and advocates. In order to ensure full participation of all attendees, pay special attention to the accessibility guidelines and related resources available on the AUCD website. Proposals that address the following topics are especially encouraged: changes and challenges of the future; international, national, and local relationships addressing collaborations across cultures and communities; strategies and present results that demonstrate the translation of research into practice and policy formulation; leadership development of student trainees and others; diversity and cultural knowledge and competence; involve multiple AUCD members and existing partners; address leadership development at all levels; and demonstrate research-to-systems-change outcomes and promising practices. Questions regarding the AUCD 2008 Annual Meeting & Conference should be directed to Crystal Pariseau or Laura Martin at AUCD.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I know I've talked a lot on here about my independent study (to the point of overkill probably), but I don't know if I ever mentioned that we tacked a research study onto it. What's the point of putting all of your blood sweat and tears into something if you then have no idea if you actually did what you set out to do? So we did a little pre/post-test, using an established scale, but I don't have it with me and I can't remember what it was. We're hoping that in the course of 3 hours we were able to alter students' ableist thinking. Even if just by a tiny bit. So you may ask, "Did you?" Well, I have not a clue. The professor in charge of number crunching couldn't start on anything until about 4-6 weeks ago. She was finishing her disertation, teaching 2 classes, and she has a 1 year old. Althrough she still has a 1 year old and is teaching summer school, she's now a Dr., so she's able get to work on this. I'll let you know as soon as I do. From what I understand it's somewhat of a lengthy process.

In the email she sent me this morning, she asked me if I wanted to be included as an author. "You will have some responsibilities to prepare and present as the conference draws closer (if we are accepted)." My answer was "YES YES YES!!!!! Of course I do. You didn't even have to ask." This is my life's work after all.

I'm so excited!!!!!! If I could actually jump, I'd be jumping for joy. I'm an undergrad.

Damaging Textbooks Aimed at Human Services Students

I spent a year of my life doing an independent study where I planned a disability awareness workshop for the students in my department. Why did I feel the need to do this? Here is a chunk from another post back in Jan:

"If you poll a bunch of family studies majors as to what their future career goals are, a popular answer is working with special needs children. Then poll a few family studies majors as to what the first thought is that comes to mind when they hear the word disability (as was done a year and a half ago). You get answers such as the elderly, people who cannot work, young children, and people in wheelchairs. My first thought to that? What the hell am I then? My department is small. We take classes with the same people over and over. Even if they don’t know my name, I would be willing to bet that 90% of family studies students know who I am. I’m hard to miss, being the token gimp and all. I am a 23-year-old college student in a very structured pre-professional university program, who just happens to have CP and bipolar disorder. I am neither elderly nor a young child. I do not work now, but I am a full time student and I volunteer 1-2 days a week. I will of course work after I have my degree. There is no reason why I should not be working. As to the wheelchair thing, I’m on the fence with that one. I happen to have 2 wheelchairs in my possession, but I don’t use them all that often.

"My second thought? I would not want any of you working with my (fictitious) disabled child. In fact it scared me half to death to think that people being trained in the human services are left to go out into the real world with no real knowledge of disability whatsoever. My classic example? Say you don’t want to work with the special needs population at all, say you want to work in crisis intervention. Say you work at a battered woman’s shelter and a woman comes in with her son who is autistic. What then?"

During that time I also took a class with possibly one on the most offensive textbooks I have ever seen. I don't have the book with me, so this is not an exact quote, but in the chapter that discusses understanding where both you and your client are comming from, there was a sentence to the efffect of, 'your client may be fat or thin, young or old, rich or poor, physically or mentally handicapped or whole' The part I bolded is a dirrect quote. I could never forget that. A friend of mine from home congratulated me on being part of a person. I spoke up. My department is changing the book for this fall.

This summer I'm taking adolescent psyc. The course started Tuesday. The first thing I did when I opened the book was flip to the index and look up disability. On the one page that anything is mentioned, it is insinuated that all PWDs are stupid. I even brought the book to my shrink today and had her read it. I wanted to know if I was being over sensitive. After putting it in context with what came before and after in the chapter, she agreed. Again, I don't have the book with me at the moment. I wish I did so I could quote it. The only place disability is mentioned in the book is in chapter on education. The focus was learning disabilities with a gigantic focus on ADD. What about everybody else? Do we not exist? Also, what really bothers me is that there is nothing mentioned about the socioemotional impact of disability during adolescence. I feel based on personal experiance and observation that the impact during this time in particular is incredibly signifigant Why aren't people learning this?

Apparently the first book I mentioned is rather groundbreaking. At least they tried (however unsuccessfully). We're mentioned continuously throughout that book as a distinct group. Not so in the adolescent psyc book. That focuses exclusively on culture (ie race/country of origion). Um, disability is a distinct culture too.

Then the other night after stewing on this for a couple of hours I remembered that my human sexuality book has a 2 or 3 paragraph mention about CP in the chapter discussing sexual disfunction. To the extent of my knoweldge, that's a blatent falicy. CP requires being creative when it comes to sex. So does spina bifida, SCI, and a host of other disabilities. Did I miss the memo that stated that creativity is the same thing as dysfunction? Because I thought they were completely different. I mentioned this to my shrink today as well? She asked me if it was true. I sid a real quick "no." It is so easy to cause damage. If you don't know any better...

I'm angry and I'm upset and I'm saddened about the whole thing. No wonder the students in my department have such a narrow misguided view of what disability is. Look at how they are being taught. I think any one of you would also be frightened at the thought that they are all going out into the world to help PWDs having this background.

What needs to be done (I think) is a 2 pronged approach. The first would focus on college students. Get to human services professionals, medical professionals, teachers, etc. before they go out in the field. To do this you absolutely have to target professors, which means getting a lot of research done. They like hard evidence. It's what they'll listen to. The other side of the coin is to focus on young children. Make it so that by the time they go out in the world this stuff is second nature. A no brainer. Like racism. People are always going to be racist, people are always going to be ableist, but look at the percent of people that are racist vs 40 years ago. What did it? I think a lot of it has to do with exposure. Most people don't have to learn not to be racist now, they just get it. Wouldn't that be nice if eventually we didn't have to do things like workshops? This would involve a lot of community outreach.

But why should anyone else try to do this if I won't even do it? So I do... It's the most important thing that I do. My hope is that others do too. It's 2008. Things shouldn't be like this; but they are. Things desperately need to change.

What I've Known: A DBC post

Ever since I was a little girl I've known that I needed to watch my weight. No one ever said anything to me--you just don't say that to a little kid--but doctors said it to my mom when I was in the room. They waited until I was a teen to say it straight to my face. If you have little kids, or if you work with little kids, then you know they pick up on more then you think. I've known I've needed to watch my weight since I was so little that I can't ever remember not having an intense fear of being fat lurking around in the back of my head.

Here's the logic:

People who have CP have a hard time walking.
People who are overweight have a hard time walking.
People who are overweight and have CP really have a hard time walking

Makes sense doesn't it?

Here's more logic:

The harder it is to move, the less you move.
The less you move, the less calories you burn.
The less calories you burn, the more weight you gain.
The more weight you gain, the harder it is to move.

What it comes down to is this: MOVE and watch what you eat.

Doesn't everyone need to move and watch what they eat you say? Well yes--but it's worse when you have CP. Being fat can translate into virtual imprisonment. When it's hard to get around to begin with, making it even harder is sometimes too much to bare. In my mind (this probably isn't true) fat people with CP just sit home alone all day. Doing anything else just requires far too much effort. As a skinny person with CP, sometimes doing what I have to do in a day requires too much effort for me. I don't want to try it fat.

The fear of not being able to move is recent. Not the fear I had at 6 or 7 (maybe even as early as 4). It's just amazing how young you pick up on ableism. And a damn shame. When I was little I had this picture in my head of a faceless greasy woman sitting in a manual chair in the dark right next to the couch, watching TV alone. The woman was faceless because I didn't have a concept of how I'd look older, but it was me. It was me fat and alone and very depressed. No one would ever love me like that. Why would a man ever love someone that grotesque? FUCK ableism. Why would you do that to a little girl? Of course overweight people in wheelchairs aren't grotesque. I know that now.

Thankfully there was too much going on in my life to worry about what I put in my mouth on more then just an occasional basis. There was horseback riding and playing and even awful things like surgery and my 5th grade teacher. Even awful things canpush back fears. I always said I didn't need to worry about my weight until I was done growing. Thankfully I was reasonable.

As soon as I stopped growing though, I began the journey of becoming paralyzed with the fear of being fat. At first it was the fear of being ugly and alone. But thank god one day it dawned on me how crazy that was. I'm not exactly sure when that happened. It was a gradual process throughout high school in which I moved towards my new fear--my fear of loss of function. It was at this point that I really began to grasp why I needed to be concerned with my weight. I feel as though I'm a broken record on this blog. I didn't spend my entire childhood in hours and hours of therapy and in the hospital being sliced and diced not to walk.

The phrase "if you don't use it you lose it" applies so much more when you have CP. I've been depressed and laid in bed for weeks to the point that when I finally got out of bed I could barely stand up. It doesn't take long. Being fat would probably expedite the process.

I've weighed myself practically every day since I was 17. I'm 5'1.5" (the .5 matters). I prefer to be below 120lbs. Lately I've been hovering between 121/122. But I have more important things to deal with right now then counting points. I'm annoyed at that number all the same. It's ok though until I see 123 for more then a day or so. Then I know it's creeping. Creeping towards 130. 130 is that magic number I can never be. 130 would cause severe panic. I'd be fat. Well not really. Not until 135 according to a BMI calculator. But still...

The theme for the 39th DBC is "if I knew then..." Sometimes what you've known can be so much more damaging then what you didn't. I've thought about my weight every single day for the last 7 years. That isn't healthy.

Still on Hiatus But... A Book Review

I'm in the library, working on my Family Law & Public Policy final that is due in 9hrs. Almost done. Part of the final is on the book Secret Girl, by Mollly Bruce Jacobs. Since I just wrote a review I thought I would post it here too. Below is the back of the book in italics, and then my review. Has anyone read the book? Please comment if you have.

"For decades a well to do Baltimore family guarded a secret they felt too ashamed to reveal, much less speak of among themselves. For one daughter, the secret would haunt her for years but ultimately compel her to take surprising risks and reap unbelieveable rewards--the story of which forms the stunning narritive of this remarkable memoir.

"When Molly Bruce Jacobs, the family's eldest daughter, finds heself newly sober at the age of thirty-eight, she finally seeks out and comes face-to-face with this secret: Anne, a youger sister who was diagnosed at birth with hydrocephalus ('water on the brain') and mental retardation, was institutionalized. Anne has never been home to visit, and Molly Jacobs has never seen her. Full of trepidation, she goes to meet her sister for the first time. As the book unfolds and the sisters grow close, Jacobs learns of the decades of life not shared and gains surprising insight about herself, including why she drank for most of her adult life. In addition. she gradually comes to understand that her parents' reasons for placing Anne in a state institutionwere far more complex then she'd ever imagined."

I was disappointed in the book. It was introduced to me (I thought) as a book about a woman who grew up in Rosewood (an institution in Owings Mills, MD, very close to where I am sitting right now) that just happened to be written by her sister. Instead it was a book about Brucie, who just happens to have a sister who grew up in Rosewood. I didn't need to hear exstensively about the trip to Italy or dance class. I wanted to hear more about Anne. I think I would have liked the book better if it had focused more on the 10 years Anne and Brucie knew each other.

Also, I was disappointed with the way that Anne was portrayed throughout the book. Why were her childlike qualities emphasized? Anne was an adult. Refer to her as an adult. Yeah, she has her issues, but they can be illustrated differently. The tone of the entire book brings to mind the Tiny Tim view of disability. I take offense to it. Read No Pity, by Joseph Shapiro. Look at the part about Sotherbury Training School, about the court case to detirmine the appropriateness of a limited legal guardian. Read chapter 10, which is about Jimmy who spent 30 some years in an institution. Read about how he got out. All of these people have the same issues as Anne, but it is still very clear that they are adults. This is how it should be done.

Blog on Hiatus

I know that some of my friends really enjoy reading my blog, so I just wanted to give everyone a heads up. Monday night my computer crashed right in the middle of writing up a take home final. It won't turn on and if I try it just makes aweful noises. So now I am stuck in the library to redo that final. It's just AWEFUL timing. So my blog is being discontinued until such time that it is fixed. I'm anticipating that I'll have it working the beginning of June Hopefully I'm wrong. G-d forbid I have to get a new one...

My poor computer It has never been treated kindly by me. I have triped and fallen while carrying it. It has been close to the edge of my bed more than once and knocked off onto the floor while I attempted to get into bed. I think maybe it is fighting back. The poor thing has just had all it can take of my mistreatment. I guess that's just what it gets for being owned by a spaz. At least it lasted just 2mos short of 5 years. I guess that's somewhat impressive.

Some Meanderings About BADD & a BADD 2008 Disaboom Directory

I recieve tremendous support from everyone I'm around on a daily basis. 8 out of the 10 full time professors in my dept have either extensively worked w/PWDs, done peer reviewed research about PWDs, and/or have at least 1 PWD in either their family of origin or procreation (even if it is something "nontraditional" like cancer). Chances are that the other 2 do too and I just don't know about it. When I need an accomodation, I get it, no questions asked. When I don't know what it is that I need, they are the ones who initiate figuring out what it might be. They're pretty good at it (even if I'd rather not listen to what it is they came up with).

All of my close friends are multiply disabled as I am, and are either finishing up their undergrad degrees, in their first year of grad school, or are in their first year working post-masters degree. Last night I had a conversation with one friend about our sensory stim needs and talked with another about voice intonation and some such thing. Sometimes I have conversations with friends about medications. A friend with CP decided to stop at target on her way home from work yesterday. She also decided to walk home from there. It's a 2 sec car ride but it took her 40mins on foot. It would probably take me 30mins. She had a heavy backpack with her in addition to what she went there to buy (was she crazy???). I know EXACTLY how she felt when she walked in the door. The only way you know what that kind of exhaustion feels like is to experiance it yourself. It's not something that can be explained. I surely can emphasize with her. I know exactly why she did it without ever having to ask. If it was me I would have done the exact same crazy thing in a heartbeat, knowing fully well just how crazy it was.

It's a wonderful feeling to be in an environment where everyone "gets" me. I say "gets" because no one gets me entirely. Yesterday was the 3rd annual Blogging Against Disablism Day hosted at Diary of a Goldfish. Stumbling upon last year's BADD inspired me to start this blog. Reading BADD posts lights a fire within me. It provides me with a level of comfort that I'm not sure I can clearly articulate in words. Sometimes I feel more connected to those in the blogsphere then anyone else. My friends and professors are not activists. Fighting the good fight is on a whole other plane then just having first hand experiance with/as a PWDs. I have such a strong driving force behind me, and knowing that so many of you do too is what brings me that comfort. I always know that I'm not alone, but it never hurts to have that reinforced.

The official BADD directory is long and very extensive. I hope to read through every post and comment here about my favorites, but it's the end of the semester, so that isn't going to happen anytime soon. What I thought I'd do is link other disaboomer's posts below so that they are all in one spot and don't get lost in the shuffle. If you're a disaboomer and posted on your offsite blog, please comment. I'd still like to link you.

In alphabetical order:

Attila the Mom (on her offsite blog): Little Pitchers Have Big Ears
CherylBeryl (the official post): Focus on Your Needs: BADD 2008
CherylBeryl (the unofficial post): Tiny Tims & Supercrips
Nightengale: Anyone Else Doing Blogging Against Disablism Day?
Veralidaine: Why Disablism is Your Problem, My Problem, and Everyone's Problem
Vicki (a slightly late post): 5 Ways the Internet is Important to Me

Happy reading!

Focus on Your Needs: BADD 2008

If this is the first time that you have had a visit to my blog, I'd like to extend a big welcome. I hope you'll look around some more. For this year's Blogging Against Disablism Day (my very first), I thought I'd start with 2 lists. Their connection to the mission of BADD will become clear beneath. In no particular order...

How I'd like others to treat me:

• With respect
  

• Interact with me as you would with anyone else my chronological age-even if my head's not always there
  

• Don't cut me any slack

For me right now this mainly relates to expectations with deadlines. Even though my particular issues make them more difficult to meet, I have proven that I can meet the same deadlines as everyone else. As I've said to some people in my life, people generally want to meet the expectations that are set for them as long as they are realistic. If a low expectation is set people will meet that. But if expectations are raised a little bit I believe that they will meet them.

• Recognize that sometimes standards may need to be tweaked
  

Expectations are different than standards. I am expected to present myself in a professional manner. I am expected to meet deadlines. But maybe in order to meet that deadline I need to be told in advance of other people so that I have more time to get myself together. That to me is a standard.

• Push me past my limit
  

This is what I can do and this is what I cannot do. I've spent 23 years with cerebral palsy. No one can know that better than me. But people evolve. Sometimes I'm stuck in what I could do 5 years ago; or 10 years ago. Maybe I can do things I don't think are possible. I don't know for sure until I try again. I've been surprised lately.

• Be patient with me
  

I'm going to try your patience. A lot. For the most part it is not intentional. Sometimes I can amaze you one minute and then turn around and do the opposite the next. Human beings are by their very nature imperfect. I'm not exempt from this. This does not mean that I want you to let me off the hook. What I would like is for you to remember to take a deep breath and move forward from where we are at the moment.

• Tell me what you're thinking
  

I'm absolutely horrible at interpreting normal social cues. No one is a mind reader, but I'm much worse than most. I'd like to improve on this. I need to improve on this if I want to function in society. But I can't improve on this if you don't help me.

• Ask questions
  

If you don't know how to appropriately handle a situation or if you are not sure why I seem to be having trouble with something, just ask me. I don't mind and in fact, I wish that you would. It benefits us both.

• Remember how hard I'm trying now
  

While I was born with CP, I only found out I was bipolar 6 months ago. I'm treading in completely new territory. It's scary and it's overwhelming. But I'm working to figure it out with everything I've got. It's the hardest thing I've ever had to do. Sometimes I'm going to have an off day. Again, the worst thing you can do for me is to let me off the hook. This is always going to be a part of my life. I need to learn how to handle it. All I'm asking is for you to not make a judgment call.

• Help me to channel my strong will
  

Strong will is not a bad thing. In my view it is the best attribute that an advocate can have. But my strong will gets me in a lot of hot water. Sometimes I might need a gentle reminder to check myself.

How I'd like to treat myself:

• With patience
  

Rome wasn't built in a day. I'm trying a lot of new things at once. I would like to have mastered them all last week, but that didn't happen. That's ok, because I know that one day everything will finally click.

• Realistically-push myself, but not too far
  

What am I really able to do? Sometimes I'm going to need to give that some super serious thought.

• Find a balance
  

Doing nothing is not healthy. Doing too much also is not healthy. Sometimes I feel like goldilocks. It is very important to find what is "just right."

• As an adult
  

Even though I might not feel like an adult and even though sometimes my head isn't there, I am 23. Fake it til you make it.

• Remember that sometimes standards need to be tweaked, and that's ok
  

As much as I want to be treated like everyone else, sometimes equal does not mean exactly the same. I'm going to need help. It's an inherent fact of my life. I've quoted this post before: "It just seems so odd to me that people think more highly of me now that I am actively seeking/accepting help then before when I was just as actively pushing it away. Logic says that it should be a sign of weakness."

• Continue to express my needs
  

Remember that just like I can't read other people's minds, they cannot read mine either. How can they know what I don't tell them?

• Forget what I know
  

I've done too many research papers. The vast majority of statics that pertain to PWDs are grim. In fact, they scare the crap out of me. But who ever said that I have to be a statistic?

• Focus on my strengths but don't ignore my weaknesses
  

Sometimes I do need to be hard on myself but yet, sometimes I go overboard and am too hard on myself.

• Put myself in other's shoes
  

Yeah, I'm bad at interpersonal skills. Does that let me off the hook? How did whomever perceive what I just did or said? It's important to consider.

• Remember that it can never hurt to try, but it can hurt not to try
  

What does any of this have to do with ableism? Well I'm trying to get people I'm interacting with to get on board with this. I say things to people, I write them emails, and then they turn around and let things slide, let me get away with things they wouldn't let other people get away with. That my friends, is blatant ableism-the fact that people unconsciously have set lower expectations for me because they do not think I am capable of meeting the ones that they set for everyone else. It's frustrating. I got up to my maximum dose of my new bipolar medication 5 days before spring semester started. When they kicked in I was off for a few weeks. I went up to professors and told them this and then they really let things slide. I was getting away with murder. People weren't taking me seriously because gosh, the girl has CP and bipolar, it must be so hard. You know what, it is hard. Really hard. But not holding me to expectations, or thinking that I am too fragile to be pushed, that does more harm then good. It severely impedes my functioning. That's not fair to me.

I'm sitting here with the 10pg research paper I completed in July for my independent study right beside me. It's on the history of ableism. It covers general statistics (those evil things that scare me half to death), historical views (including the concepts of the Tiny Tim and supercrip), The medical and charity models, the social model, and then sums up what an accessible society should look like as according to Mary Johnson. In her book Make Them Go Away, she says "that equality means, in fact, that sometimes people have to be treated differently, given different accommodations in order to achieve equal rights" (pg 205). In a truly accessible society it is celebrated and taken for granted that everyone (both disabled and AB) have different strengths and weakness. Like Johnson says, I feel that we as a collective want to be viewed "by society [as] just people-not different in any critical way from other people" (pg 204).

I know that's all I'm asking for.

TV Show Covers Contriversial Topic

Last night I was watching Law & Order: SVU. I believe it was from this season as I was watching it on NBC, not USA, but I hadn't seen it. The show centered around a sperm bank that had a case of embryos stolen. In that case were 2 very contriversal sets of embryos. The first was from a couple who both have acondroplasia (sp?) and were screening out babies with double acon, but whose dr. then refused to implant because the parents wanted only acon babies implanted. They did not want an average height child. The second was an Ashley X case. 2 parents had decided to have their 8 y.o. daughter undergo hormone treatments to stunt her growth, and while they were at it, decided to harvest her eggs. Why? The mother wanted another child but was infertile, so she was going to implant her daughter's eggs with donor sperm and then carry the baby as a surregette. I thought this show could start up some discussion here on disaboom, but was uncertain of where to post this on the forums, so I decided to post it here.

Hunny Bunny

Last night I watched the Lifetime movie of the book The Memory Keeper's Daughter, which centered around a girl born with down syndrome. The following was told as a bedtime story part way though the film. It really touched me. I hope I didn't butcher it.

"There once was a little bunny who was perfect in every way, except that none of the other bunnies thought so. Whenever she would go out on a walk, all of the other bunnies would call 'Here comes Funny Bunny!' That made her feel so sad that she would go home crying to Mommy Bunny. Mommy Bunny said 'Everything is different. Every flower is different, every butterfly is different, and every bunny is different. That's what makes you who you are. You're not my funny bunny, your my Hunny Bunny!'"

6-Word Memoir

There is a book that has been out for 2 months that I am just now hearing about--Not Quite What I was Planning: Six-Word Memoirs by Writers Famous and Obscure. The writers at Smith Magazine challenged their readers to sum up their lives in 6 words or less. The favorite entry of a Baltimore radio morning show guy? "He wore dresses. They caused messes." After he interviewed the editor of the book he challenged listeners to call in with their 6-word memoir. I thought I'd give it a go and never thought that I would come up with mine almost instantaneously:

Always trying, but never quite there.

Apparently it wasn't air worthy, but it says all anyone needs to know about me rather perfectly. What's your 6-word Memoir? Please share in the comments section under this post and maybe over at smithmag.com like I did. They're in the process of compiling a 2nd volume.

Oh, and there is one more thing. There is only one rule: NO EXPLAINING YOUR MEMOIR!!!!!!!! It's way more fun to read these and come to your own conclusion.