The Jewish Experiance (of a Crip)

I like that I'm finally beginning to discuss Judaism on here, to reflect on my Jewish journey. In ways it shapes who I am just as much as being a crip. It's a piece of me too, the other side of my coin.

[image description: star of david necklace over torah text]

2 people in Hillel have been planning a program--The Jewish Experience. What it was was 2 sessions and then a panel discussion. Present were a Reconstructionist, Conservative, and Orthodox Rabbi. They each spoke separately, so you got to hear 2 of them since there were 2 sessions, and then there was a panel of all 3. I'm going to call them by stupid names just so I don't disclose their identity w/o their permission.

The first guy I went to was Mr. Reconstructionist Rabbi. He had worked at my camp one summer when I was 13, is the head of another local Hillel now, someone I traveled to Israel w/on a group trip 2 years ago, and is very gay, very out and proud gay. I respect him for this now, though I (and the rest of my fellow campers) were very put off by it when we were 13. 13 yos are so immature. I also respect the Reconstructionist movement for embracing LGBT into their community and allowing such a very gay man to become a Rabbi. They're so cool! Until recently if you were going to become a Conservative Rabbi you had to be in the closet--very in the closet. That's not right--to me anyway.

His bio in the brochure said something about his interest in the LGBT community, but not right out that he is gay. He mentioned in passing something about including LGBT in the Jewish community. When it was time for Q&A one of my friends asked him to expand on this further. He did. To sum it up very briefly he talked about how much including people who are different into your community enriches it. Right on! Now why doesn't the LGBT community team up with the crip community sometime? We're all on the same page it seems. I might have added something about disability community, but I couldn't work it in where it would fit right. Then all of a sudden we were out of time.

After Mr. Reconstructionist Rabbi I decided to go next door to Mr. Conservative Rabbi. He was cool too. I was able to bring up the time I got the feeling that the Conservative Movement was turning slowly to be cult-like (another story for another time) and we had a discussion about that. A lot of what he talked about was changing with the times to keep people connected and involved. What about virtual services? An idea to consider. Why not? Therapydoc talks about virtual therapy (don't have the time to locate a post) about facilitating sessions over skype while she has to be away. I don't think it's a big step from that to virtual services. He talked about how he may start tweeting, but not a blog particularly b/c those take up so much time (they do). He asked if there were people who found that they were closer to people they know online then people in real life. One other person besides me raised their hands. He mentioned how being online opens up so many more lines of communication. I agreed. Someone disagreed. We could have possibly gotten into a fight, but the topic of conversation very easily shifted. Anyway, I am now going to call him Mr. AWESOME Liberal Conservative Rabbi. I don't know many Rabbis who so readily embrace new technology. I was about to ask Mr. AWESOME Liberal Conservative Rabbi about crip inclusion when we again ran out of time. The one and only complaint I have about this program is that there wasn't enough time for anything. Jews like to talk and debate.

So then we got to the panel. I sat for a bit, went out to use the facilities, and when I returned was quietly whispered that the current topic was Why do bad things happen to good people? 'Hmmm...' I thought. 'Can I work disability in here?'

Then it happened. Mr. Orthodox Rabbi spoke. In my experience, Rabbis (especially Orthodox Rabbis) and hebrew school teachers like to use very old stories that have been passed on from generation to generation when making a point. Mr. Orthodox Rabbi's story was used to emphasize how sometimes things that seem bad are really good. I hope I have it close to right.

[image description: donkey]

There was this guy way back when who was traveling somewhere on a donkey. He had a candle w/him to use to see in the dark & a rooster to use as an alarm clock, b/c you know, alarm clocks weren't invented yet. How you travel w/a rooster I don't know. Anyway, he stopped at an inn and the inn was full. He had to sleep outside. While he was outside his candle somehow got blown out, some predator animal ate his rooster, and a bigger predator animal ate his donkey (I forget the specifics of this part). A situation where people go "FUCK!" It turns out though that that night a group of Roman soldiers overtook the inn and killed everyone, but he was spared b/c he was not in the inn. He was spared b/c there was no candle to shed light or animals to make noise that would blow his cover.

That was my in. I raised my hand. "Along the lines of something bad being good, Mr. Reconstructionist Rabbi #1 (who had had to leave and was replaced by Mr. Reconstructionist Rabbi #2, who works at another local Hillel) talked about inclusion of the LGBT community. I have a wheelchair out in the hall. I have a disability. Throughout history disability has been seen as bad. As something evil. Captain Hook has a hook b/c it makes him more evil. But really, disability is not something bad. Including disenfranchised groups enriches the community. But in my experiences, the Jewish community is actively pushing us away. Either by actually pushing us away or by choosing not to educate themselves, to become ignorant. Why is that?"

I was disappointed. Mr. Orthodox Rabbi very slyly like a good politician, brought the discussion back to the original question and neither Mr. Reconstructionist Rabbi #2 nor Mr. AWESOME Liberal Conservative Rabbi took the opportunity to bring it back. I know that if Mr. Reconstructionist Rabbi #1 had still been there he would have answered me right off. As I already said, he's disenfranchised too and we're very clearly on the same page. I also think that given more time to answer, Mr. Awesome Liberal Conservative Rabbi would have answered me too. He came up and apologized to me that my question did not get answered. I shared one of my experiences; the shortest one I could think of. He told me about how 2 years ago they put a ramp up to the bima, and the building was built in 1922. Both religious organizations and historical buildings are exempt from the ADA. They never had to do that, but they did. I went to their website (I guess now I'm giving up his identity) to check the place out. I liked him and he captured my interest. Why in the world didn't he tell me about this?:

Friday, May 1 6:00 pm -9:00 pm Services, Dinner and Lecture with Guest Speaker Rabbi Tzvi Marx

6:00 pm Services
7:00 pm Dinner (limited seating, please RSVP by the 24th of April)
Costs: Adults- $18
Children 6-12 yrs.- $12
Children under 6 yrs.- Free
Maximum per family- $48
8:00 pm Lecture by Rabbi Marx
Topic:"Jewish Attitudes Toward the Handicapped"

I'm going to go I hope and hopefully bring a friend or two. If you're reading this and you're a local and decide you want to go too, leave me a comment. I'd love to meet you.

My Whole Life is a 'Happy Accident'

No, not one of those kind of accidents (I did say happy, didn't I?). [picture to the left is a car crash] And it wasn't an accident that I was born or that I have CP. No hospital negligence there. So what's the accident then? The accident is that I'm a uppity intellectual activist crip. Well, maybe not the uppity part. That's been ingrained in me. But surely the activist part.

What's the story? The story is that Monday evening I was giving a guest lecture to a bunch of undergrad students in a section of Teaching & Learning in a Diverse Society. The section is taught by the head of the center for student diversity. As an aside, I need to write that guy a thank you note. That's right, I want to thank him for the privilege of letting me speak in his class, as opposed to him thanking me for taking the time out of my day. He gets it. He really gets it. He gets that disability has a distinct culture and community and he gets that there is disability discrimination. Even though he doesn't know the word ableism he still talks about it in that context, asking people to view it in the same way they would view any other -ism. Most of all he gets that you can't learn about disability out of a textbook. You have to put a face and a story to it. It's why he looked for me (or someone like me, didn't know me before).

So of course he asked me if I'd ever experienced discrimination in the workplace (and in school and w/peers, but he didn't outright use those words). I said no. Then in my head I said 'that's not right.' It was a few hours later when I finally realized I'd forgotten about the time I tried to be a camp counselor. Doesn't matter though. I like the answer I gave better. I said no because I've chosen to work with places like the Maryland Disability Law Center, I'm involved in the Cross Disability Rights Coalition, I used to volunteer at a pediatric rehab hospital, I do this (and by this I mean speaking to students and professionals to break down barriers).

He asked me why? Why did I choose to work with my (pause) culture, in my community (I could kiss him for using those words)? I said that it's what I feel drawn to, my purpose, but that it was an accident. This was back in the dark ages when people still had VCRs and watched these things called tapes. Back when you had to put the TV on channel 3. It was 1999 or 2000. I was 14 or 15. We had rented a video. It was done. The TV was on channel 3. The TV was on a board of ed meeting. There was this kid testifying. His mom has severe epilepsy. He talked about how people stare at his mom in public and stuff. He talked about the Montgomery Exceptional Leaders (MEL) program and was there to try to get more funding to expand the program.

I looked at my mom. "What is this? What is he talking about?" I was expecting her not to know. Turns out she did know. Turns out MEL is a program for high school students with disabilities in my school system that trains us in self-advocacy and public speaking. What we did after the trainings was go to elementary and middle schools and talk to 3rd-8th graders about what it was like to have a disability. I got to skip the middle of a school day about once every other month in order to go (that was cool). Sometimes I did after school ones to grad students or as a training to teachers. I think there were about 60 of us involved from all over the county; from special ed to honors/advanced placement and everywhere in between. Usually 8-12 people went and we were broken up into groups of 4-5 so that we could hit up multiple classrooms at once. The coordinator tried to pick a good mix of us so that hopefully everyone in a room had a different disability.

My mom didn't know all of this, but she knew enough (had heard a group speak years and years ago) to peak my interest. "How come I no one has told me about this?" I asked. "I want to join. I want to do this."

"Are you sure?" my mom asked. "Kids are going to ask questions. Are you sure you're not going to be uncomfortable? You are going to have to answer them."

"YES I'M SURE. I want to do this." She was shocked. Like most disabled teens I hadn't been particularly comfortable with my disability up until that point. The rest is history. I went to school and went to my guidance counselor. "What is this? How come I don't know about this? I want to do this. I'm going to do this. How do I do this?"

We have 23 high schools in my county. 190 schools in total. We are somewhere in the top 5 biggest school systems in the country. Not every high school participates in MEL. Not every high school knows about MEL. Apparently she didn't. I made sure she found out. There is an application process. Someone in your school has to nominate you. She did. I participated for 3 years.

On my resume pretty near the top it says:

September 2000-Present Disability Awareness Presenter

• Participated in approximately 30 elementary and middle school assemblies, teacher trainings, college classes, and peer assistant trainings
• Presentation topics include disability & education, community inclusion, disability & the family, and disability/ableism awareness, among others
• Conferences:
• November 2008 Poster Presenter, Association of University Centers on Disability Annual Conference
• December 2007 Panel Presenter, Partnership of Jewish Life and Learning or Greater Washington’s Opening the Gates of Torah Conference

Above that, it says:

June 2008-Present Member, Cross Disability Rights Coalition

• Attend Bimonthly meetings along with other activists from across Maryland to advocate for better community living options for individuals living in nursing homes or state run institutions
• Testify at state legislative hearings in support of disability related bills
  

March-December 2007 Independent Study, Disability and the Human Service Worker

• Planed a 3 hr disability awareness program for the Family Studies and Community Development Department
• Received an independent grant that was used to fund the workshop
• Successfully lead 5 monthly planning committee meetings and 3 training meetings for peer workers
• Completed a pre/post study that gauged participants attitudes about people with disabilities
• Designed brochures and handouts to be given to participants

There are other disability related things on there as well. Practically my whole resume is disability related. It's a full 2 pages. I can't work and go to school, but I can do things like this. Anything to give me an edge over someone else. Anything to help myself and my community. Rabbi Hillel, a long ago dead very famous guy said this "If I am not for myself who will be for me? If I am only for myself who am I? If not now when?" I believe in that. If you want something done, do it yourself, but think about your community when doing so (if only I would live by that all the time).

I googled Montgomery Exceptional Leaders hoping to find a logo to put in here. I think we had one. What I found was a case study in a book. Google book search will not let my copy/paste into here, and due to vision problems I am not going to retype it when you can just click. I'm trying to figure out if I know him. If we overlapped in years. But the point is, that guy is me (except that my hearing is not the issue). I could not explain any better what exactly that program did for me. It's perfectly put.

My whole life is the result of a freak accident. If we hadn't rented a video that night, had the TV not been on channel 3, if we had even watched the video at a different time, I would not be the person I am today. I have a feeling I might still be a somewhat depressed, slightly bitter, a little angry, and very lonely woman. Not that I'm perfect now, but I have some pride in who I am. I owe a lot of my current existence to MEL, and in particular to the woman who ran it through those years (who is no longer). All I can say is thank you.

And now to be totally random, the indie movie Happy Accidents is pretty good IMO.

Thankful Thursday

This week I am thankful because...

• it has been raining like everyday and we need rain. We were heading into a drought.
• it is going to stop raining in time for the weekend. Won't ruin my plans.
• we had a GORGEOUS weekend last weekend as well.
• there are books about crips in this world. Enough said.
• there are people in this world who get it. Disability is cultural and there is a community.
• I got botox Monday.
• I have an iPod to help me fall asleep at night
• I am stronger than my benzos and didn't ask for a refill yesterday even though I only have one left.
• I had a nice unexpected dinner with a friend 2 days in a row.
• There is a new episode of Grey's tonight after 2 weeks of old ones. Not only that but I get to see Oreo!

[image description: rain cloud]

If You Live in Baltimore (city or county)

Dear Constituent,

The Maryland Transit Administration is holding a series of public meetings before making official proposed route adjustments. The public meeting schedule is as follows:

Wednesday, April 29, 2009 from 6:00 – 8:00 PM @ Pikesville Senior Center, 1301 Reisterstown Road, Baltimore

Monday, May 4, 2009 from 6:00 – 8:00PM @ Towson Library, Towson Meeting Room, 320 York Road, Towson

Wednesday, May 6, 2009 from 6:00 – 8:00PM @ Domain, Brewers Hill Lobby Level, 1200 S. Conkling Street, Baltimore

Route modifications for 18 existing bus lines are being considered at this time.

Number 3 – Add rush new QuickBus service (No. 43) along Route 3, and eliminate half of the current 3 Express (3X) trips.

Number 8 – Add QuickBus service along York Road (No. 48) from Towson to Downtown, weekdays and Saturdays and eliminate 8 Express (8X) service.

Number 43 – New QuickBus service along Route 3 and 36.

Number 48 – New QuickBus service along Route 8.

If you need additional information please contact Mr. Henry Kay at 410-767-8362 or email at hkay@mtamaryland.com

Very truly yours,

Delegate Susan L.M. Aumann
District 42 - Baltimore County
303 Lowe House Office Building
Annapolis, MD 21401
410-841-3258; FAX 410-841-3163
susan.aumann@house.state.md.us

Susan Boyle (from Britain's Got Talent) has LDs, & Other Stories

Another crip on TV. Check it out http://www.patriciaebauer.com/2009/04/16/susan-boyle-disabilities/

And oh yeah, the North Pole is now wheelchair accessible http://media-dis-n-dat.blogspot.com/2009/04/north-pole-now-wheelchair-accessible.html

Lastly, A Question for All: Do you Doubt my Puberty? http://www.desmoinesregister.com/apps/pbcs.dll/article?AID=/20090414/OPINION01/904140365&s=d&page=#pluckcomments

It's THANKFUL THURSDAY Yet Again

[image description: a cartoon sun w/a smile]

I don't do one of these for a week or 2 and I start to forget. Except that it's been an absolutely GORGEOUS day today and

• I am thankful for that (nice segway to the list, isn't it?). I am also thankful because...
• it is going to be in the 70s all weekend. It was 48 and rainy yesterday
• people read this blog and that makes me feel important
• while the last remaining ice cream place in town closed down due to the economy, the hot dog place across the street will continue to sell their ice cream
• Passover is over
• my paratransit ride came right on time this afternoon, and even though someone else had to be picked up before I got dropped off, I still got back from my shrink appt in less time then when I call a cab (weird)
• I already knew of 5 ways to get from my dorm to my shrink, but the cab driver who drove me there today went yet another way and this way was the prettiest
• my nano has a great playlist
• I didn't get into the ADAPT youth summit. Would have been great, but I wasn't looking forward to coming up with the money and now I can apply for LEAP, which does not require airfare
• I got the bestist cuddliest blanket as a birthday present

And now a quote from the sig line of someone's email to me (something to think about):

"Never Be Afraid to Try Anything Once. Remember, Amateurs Built the Ark, and Professionals Built the Titanic."

BADD is Coming up May 1, 2009

The Goldfish has asked that we all help spread the word and make this the biggest bestest (is that a word?) BADD ever! What is BADD you ask? Well the acronym BADD stands for Blogging Against Disableism (that's what they call ableism in the UK) Day. It's a blogging event, blogswarm (correct term?) where all kinds of bloggers--crip bloggers, mommy bloggers, AB bloggers, etc--stop to recognize how ableism affects everyone's lives. We write about things such as education, parenting, history, healthcare, politics, media, WHATEVER in the hopes of bringing awareness to the prejudice and working to help eradicate it.

I found BADD 2007 while googling ableism and spent HOURS glued to my laptop reading entries. It inspired me to start my disaboom blog. Reading BADD posts lights a fire within me. All the passion is empowering and contagious. Last year's BADD was the first one I participated in and I CAN'T WAIT until this one! I'm hoping to get my thoughts together in time to write another r-word entry, but if for some unfortunate reason my brain will not let me I guess I can always post my recent entry about the stigma surrounding psyc issues.

Please join BADD yourself. To do so click on the BADD icon at the top of my sidebar (not the one in this post). Below that are also links to the 3 provious BADDs and the links to my previous entries if you care. Please also come back here and let me know if you read something spectacular from this upcoming BADD or a previous one. Post the link as a comment to this. It's just too hard for me to get to them all and I know I've missed some GREAT ones. My two personal favorites (both from BADD 2007) are:

Sandbox Lessons
One in Five

EMHE: Sends a Bad Message about Crips?

I was hoping not to blog this week after my blogging frenzy last week, and spend less time in the library, but alas, I clicked on Beth Haller's facebook profile and was lead to an article in New Mobility Magazine in which she is quoted.

Reality shows seem to have picked up on that theme more than other TV fare, but not always in the most beneficial light, the best example being Extreme Makeover: Home Edition, the popular, do-good series that draws 10-12 million eyeballs a week. In Haller's words, it "embodies a 'tragedy/charity model' in which people with disabilities become objects of pity." Raynor says the whole disabled community comes off looking like "a community of need" in this show ... It might make America feel good about being vicariously charitable, but it plays to the worst stereotype of the helpless crip. Of course everyone on this show is forlorn and needy — that's the whole reason they're on.

This is going to be a short post. I watch EMHE on occasion. Sometimes I pick up neat accessibility tips, such as some great removable suctioning grab bars, or over and over again how to create a gradual slope up to a front door so that it doesn't look as though it was ramped for a gimp in a chair. Those wooden ramps built over existing stairs aren't exactly pretty. Sometimes I don't, but there are often crips on the show.

Take just last night for instance, about a family who adopted 5 disabled Chinese orphans. I agree with Haller that the show does tend to portray a tiny tim/supercrip mentality when they have crips on the show. Look at all the challenges so-and-so has, look how hard their life is, but look how hard they work to overcome! They're so courageous! It makes for good TV, higher ratings, the show is more compelling. BUT, I also believe the show brings more awareness, does more good than bad. The show levels the playing field, by taking away barriers that hinder people's independence, such as making last nights familiy's house easier to navigate by the daughter who is blind and providing a full scale model of the house to aid her in being able to understand the new layout. It shows America that while someone may always be disabled, it is not really their disability that bars people from being full productive citizens, but rather architectural and attitudinal barriers that handicap people from being fully included in society. Put bar codes on all the food in the kitchen and have a scanner with voice output and a blind teen can cook just like anybody else. That resonates with me more then the pity, and I hope that's the message ABs get as well.

But that's just my opinion. What do you think. Please comment. I'd like to hear. If you're reading from outside the US and want to view last night's episode, just go to abc.com and click on full episodes near the top left of the screen in red. Once the viewer is up you can click on settings and view CC, but just so you know, that does not work with the full screen view. To read about many more examples of crips on TV then I ever realized, read the New Mobility article. Haller, btw is from media dis&dat.

Beware of the Cripples!!!!!

THEY'RE EVERYWHERE!!!

I was going to post this about a month ago. It's applicable now more than ever. It seems as if I'm running into crips everywhere I go. I seemed to notice first on March 7th. I was at a pool for a friend's bachelorette party and saw TWO crips there. One was a girl w/down's and the other was a teen/young man with what I presume was CP with a decent cognitive impact to go along. He was there with his parents who were helping him in the water. His chair was by the side of the pool. Why anyone would put a custom monogrammed seating system in such a crappy manual chair is beyond me.

[image description: a cartoony stick figureish guy sitting in a manual chair in the grass w/some flowers and the sun on the top right w/eyes & a smile. the guy also has big eyes and a big smile & is waving his stick hand]

I've seen crips at the mall. A few weeks ago I had to make a purchase and saw two people signing to each other. That made me smile. I may have seen other crips that day. I don't remember. It's not like this is the first time I've ever seen other crips at the mall. I've seen crips in manual or powerchairs and scooters all the time at the mall. Once I saw a very small child using a walker. I think I knew him from when I used to volunteer at a local pediatric rehab hospital. I was too shy to go up and see. Tuesday I went to the mall to exchange what I bought a few weeks ago and AGAIN saw two people signing. Two different people, as they were black and the first two people were white. I also saw a man with CP walking through the food court and someone in a scooter coming out of a store.

I cut through a bookstore to get to/from the mall to avoid crossing lanes at a busy traffic circle. I know it's the law to stop for pedestrians, but it doesn't mean one day someone won't be fooling with the radio. I've seen crips in there before too, but there seems to be more in there lately. I saw one when I was in there after the mall, which was funny after all the crip sightings. I think it was the guy I ran into a few weeks ago in the cafe. He had wheeled from his apartment up the street and bought a newspaper to sit and read and I had picked up a copy of Voluntary Madness to read. It was funny how we approached there about the same time and both studied each other's chair intently. It started up a conversation wherein I felt a deep bond with this man I had never met before and who doesn't have a story anything like mine. It's the chair that bonds.

I see crips when I ride the bus of course. There's a guy (freshman I think) who lives in the building across from me who is an achondroplasic dwarf. For all I know I run into people with LDs, ADD and/or psyc issues all the time. It's easy to pass that way.Last week I saw crips at an art opening, but I went with crips and DUH it was Dan Keplinger's.

Lastly, as I already posted, I went to a wedding last weekend and was happy to see M there with her family. M is an autistic middle schooler who my friend used to PA for when she was in grad school. Her parents usually leave her home for things like this and use respite care funds. It was nice to see her there even if she could only tolerate the environment in little bits at a time (I'm guessing it was too loud and overstimulating).

I wonder why I'm seeing all these crips out now? Why I haven't noticed so many crips out and about before? I'm guessing it's because I'm getting involved with CDRC and ADAPT and am watching things like art opening and he's a crip. I was glad to finally see someone (not Dan) with the wheelchair color I think I want. The colors online look nothing like the swatches the distributer has, which look nothing like they do when the chair is made. I was nervous about getting it. Now I saw it.Hows Your News? and Table for 12 on TV. They bring things into consciousness. Or maybe we're contagious, spreading rapidly and wreaking havoc on society? (sorry if that joke offends, I think it's funny) Whatever the reason, I'm glad to notice. It makes me happy.

My First Ever D'var Torah: Next Year May All my People be Free! (a twist on Thankful Thursday)

[In simplest terms, when someone gives a D'var Torah they take the week's portion of the Torah, talk about it, and relate it to everyday life. It's like a sermon, except that usually only clergy give sermons but anyone can give a D'var Torah.]

Tonight is the first night of Passover (or Pesach), a Jewish Holiday celebrating something I maintain never happened. During the week we're supposed to be celebrating the exodus from Egypt and all that jazz. I've been told it was farmers who built the pyramids during their off season, not Jewish slaves. I get that version better.

I don't follow Passover very well. I eat things I know I'm not supposed to eat and I go to class on the days that more observant Jews would not. I just don't have it in me. This is another instance of "torture" from my childhood. When someone tells you NOT to eat something, you just want to eat it MORE. I know, I'm a grown-up, I get it now. Not eating some foods for just one week is not the end of the world. But if I don't believe the story, if my heart's not in it, I maintain that it is pointless to go through the motions just for the sake of going through the motions.

That is, until the other day. I go to the Passover Seder because I go to the Passover Seder-- to be with my family and/or my friends. Not that I particularly want to go and sit through the whole thing, but I like the company, and I guess the tradition is nice too. This year friends were not an option and family was not my best option. The third option was to go to Hillel, where I used to go with my friends before they graduated. I didn't really want to go and just be around casual acquaintances, that's not what holidays are about, but I felt really odd ditching a seder, even though they used to feel like torture. It would have been the first time in my 24 years that I wasn't at at least one seder, unless you count the fact that I was born right smack in the middle of one. Obviously I wasn't present that year (FYI today is my hebrew birthday. Most people don't know their's. Helps to be born on a holiday). So I found friends and talked them into crashing Hillel.

My friends are ADAPTers. The other day I was talking (probably whining) on the phone about how much I hate Passover and how there were many years when I was a kid that my actual birthday coincided with my Hebrew birthday (made it by 4 days this year!) and I was not allowed to have a real cake (nothing with yeast all week). "But I love Passover," I got on the other end of the phone. Why would anyone in their right mind love Passover? It didn't take long for the click in my head. She's an ADAPTer. I'm an ADAPTer. I got it.

This week we're celebrating our people being freed from bondage, the end of their (supposed) dehumanizing treatment by the Egyptians. We're supposed to be thankful that we are where we are right now (in freedom, in nice suburban life) because of those who came before us and what they went through. To make it more meaningful and more relatable, some people use the Holocaust as a tie in to more recent history. Maybe a little about Darfur or the treatment of women in Afghanistan.

Nothing ever clicked from any of that. But I had my click on the phone. Passover really is a time to be thankful. I am where I am right now (literally a University library) because of people like Ed Roberts and Justin Dart fighting tirelessly to get laws like the Rehabilitation Act and the ADA, not only passed, but implemented as well. It's not some made up magical story from thousands of years ago, or even something not so old but that doesn't affect my life directly. It's my truth, my reality, something very tangible, and something not to forget. Because if I forget then I forget about all of my brothers and sisters still in institutions today. I forget about the people whose families cannot visit them often because of transportation or other barriers, I forget about the people who end up in life threatening situations due to their lack of care while in these institutions, I forget about the people who feel hopeless and helpless, who are sitting and dying instead of fighting to live.

At the end of most seders people recite a very simple phrase. "Next year in Jerusalem." It's the land of our people and represents our freedoms. My friend said she says "Next year lets FREE OUR PEOPLE!!!" I agree.

[funny story: I was interested in a good picture of ADAPT's Free Our People guy for this post. Thought of taking a pic of the shirt I'm wearing. Nah, I'll google image. Low and behold, my very own drawing pops up. DUH!!! previous post here]

Some Articles, An Addition to My Blogroll, a Video, & More on Books

The Struggle for Care from The Australian (which I got to through Terrible Palsy) is about the dire need for better community supports/PCAs for disabled adults in Australia.

Deborah at Pipecleaner Dreams wrote about a protest of Amazon's Kindle 2. There is an issue with the ability to make The Kindle capable of text-to-speech. This ability is an absolute BREAKTHROUGH for people who either cannot read or have difficulty.

From media dis&dat: Believe it or Not, California Donut Shop Built Around Theme of "Fun Mental Institution" There's a petition now to try to get Psycho Donuts to change their theme. Also, if you have HBO, New "In Treatment" Character Deals with Cancer, Brother with Autism. Man there are A LOT of crips on TV at the moment. Beth also posted articles about two other shows. Michael J. Fox Begins His Run on "Rescue Me" & Daryl "Chill" Mitchell Returning to TV.

For once there are too many crips on TV for me. I won't be able to keep up with this much TV. These shows of course are in addition to Table for 12, How's Your News?, & Little People Big World. The best part? Everyone actually has a dis, as opposed to the trend of AB actors playing crips (Dustin Hoffman, Rain Man, Sean Penn I am Sam, Jason Ritter, Joan of Arcadia, etc). For once, finally, people are realizing that crips can in fact act just as good as any professional AB. I mean there are examples of crips on TV (Deanne Bray on Sue Thomas: F.B. Eye, and Marlee Matlin on West Wing & Dancing with the Stars), but those examples are not nearly as prevalent.

Sometime last week I stumbled upon Two Women Blogging (which is really 3) It's listed under my "other" section of my blog roll and a GREAT blog. The authors are a Jewish (doesn't really matter, except I care) primary care physician & mother of 1, A SAHM of 2, one autistic, & a psychiatrist & mom to 3. Check them out.

I also just stumbled upon a site that has a bunch of GREAT articles about disability & sex (something I am always interested in :D)

And now, the funniest video I've EVER seen (I found it on Big Noise):


Boyfriend With Health Benefits - Watch more Funny Videos

Lastly, I've come upon some birthday $ and I'm buying Voluntary Madness. I was disappointed that the person I thought was buying it for me didn't. It's way cheaper on Amazon then the bookstore, but now it's less than $25 and I refuse to pay for shipping (I know, talking about buying something from Amazon in the same post where I suggest people protest is more than odd, but really we're not protesting Amazon, we're protesting the Authors Guild). I have enough to buy 2 books anyway. But now the problem is that I can't figure out what else to buy. Staring: How we Look sounds FASCINATING, but is way over how much I want to add. What is your favorite book? Give me ideas. Thanks

PHEW... I feel as though I just did my own DBC...

Education Teleconference

A National Teleconference and Webcast Presented by the National Youth Leadership Network (NYLN)

Advocate!! Spread the word!! Help young people with disabilities talk about education!!

When: Tuesday, April 14, 2009
9:00pm Atlantic
8:00pm Eastern
7:00pm Central
6:00pm Mountain
5:00pm Pacific
2:00pm Hawaii

What: Please join us as the speakers will be discussing the following
issues:
* Independent Living: Links to life after high school, post-secondary and beyond!

* Transition: Links between school and career goals!

* Education for all: Individuals with cognitive disabilities succeeding in post-secondary education!

* Guest speaker: Micah Fialka-Feldman, Disability Rights Advocate

* Guest Speaker: Jeff Moyer, Public speaker and Human Rights

How: 1) Go to www.nyln.org . 2) Click the teleconference link. 3) Register your information. 4) Press send!

This teleconference is presented by the National Youth Information Center of the National Youth Leadership Network. Thanks to Independent Living Research Utilization (ILRU) for supporting this event!

'Mental Illness' is Still a BIG Stigma

Thank you Captain Obvious... below are 6 statistics from a national survey commissioned by the Canadian Medical Association. From the Ottawa Citizen: Many Say Mental Illness is a Cop-Out for Bad Behaviour (which I found through media dis&dat). I just had to comment.

• Just half [of the survey respondents] would tell friends or co-workers they have a family member suffering from a mental illness, as opposed to 72 percent who would share a diagnosis of cancer

• One in four (27 percent) said they would be fearful being around someone with a serious mental illness

• Nearly half (46 percent) agreed that “we call some things mental illness because it gives some people an excuse for poor behaviour and personal failings.”

• Two in five (42 percent) aren’t certain they would socialize with a friend with a mental illness

• 55 percent said they would be unlikely to marry someone with a mental illness

• Most wouldn’t hire a lawyer, someone to teach or take care of their child, a financial adviser, a doctor or a landscaper who has a mental illness.

Back in the fall I went on 3 dates with a guy over a 6 week period. My first 3 dates ever in my entire 23.5 years. A mutual friend set us up and told him I have CP, but did not tell him I'm bipolar as well (why the hell not?). Honestly, I wish he had. But people don't do that. "Just half would tell friends or co-workers they have a family member suffering from a mental illness, as opposed to 72 percent who would share a diagnosis of cancer." This poses a big problem for me, being a person with screws lose in my head who wants people to know. Except it's just not socially acceptable. So what do I do? What is the right way, the correct way, the proper way to disclose? I never did tell that guy, but I did tell my 5 closest friends and my mother right away. Everybody in my department knew right away because I withdrew from classes that semester. That's the easy way. How I told my mom and my friends I do not remember. It was somewhere close to a year and a half ago and I was too depressed at the time to remember much of anything.

I'm going to graduate soon and I need to start looking for jobs. Conventional wisdom tells me not to tell anyone. My g-d I'm going to go into the human services and "most wouldn’t hire a lawyer, someone to teach or take care of their child, a financial adviser, a doctor or a landscaper who has a mental illness." LANDSCAPER??? Just noticed that one. C'mon people *shakes head in disbelief* Most people wouldn't hire a spaz either. The unemployment rate of PWDs age 16-65 in the US who can and want to work has remained steady for years at 70%. That of course is not counting underemployment. Now it is much worse. to have the stigma of a mental "illness" looming over me along with the inherent ableism associated with my visible cripdom, that combination is probably the kiss of death. If I work for an independent living center of course they are going to know. I don't think they'd be afraid. Anywhere else? Ummm......

"[T]here is ... an invisible army of people walking to work in the office towers ... who themselves have also experienced some form of mental illness and substance abuse, who have recovered, who are back in the workforce, who are back with their families ... But the message is very clear from this survey: They’re not going to talk about it. They’re not going to disclose. And they’re not going to disclose as long as there is a culture of shame, secrecy and stigma.”

Of course they're not. "One in four (27 percent) said they would be fearful being around someone with a serious mental illness ... Two in five (42 percent) aren’t certain they would socialize with a friend with a mental illness." If people won't even socialize with us, if they avoid us like the plague, they sure as hell aren't going to hire us. Does my BP impact my life enough to be considered serious? I don't know, but either way, this puts a huge weight on my shoulders-- trying to hide something so big. I don't know if I can do it. It's just too much for me. But I can't tell people. I just can't. I don't live in Canada, but we don't do that down here either. Honestly, I'd love it if I could just shout it from the rooftops. "I'm a 'crazy' cripple!!!!" I don't think that would go over well. There goes any job lead down the toilet. Or how about this for an opening line when I go out on a date again: "Hi, I'm Cheryl and I'm BP, I walk like crap and my eyes suck. Nice to meet you." HA HA!!! No...

I'm going to go to social work school one day. Really I am. After however long it takes to tighten those lose screws in my head. I couldn't get through the coursework now, and I want to go into clinical SW, not administrative. I'd have to see clients whose issues are just too close to home right now. I don't care if it takes until I'm 40, although I hope not. The big question is though, when the time comes do I tell my clients or not? Even on a much lower level I keep getting fed the message that self-disclosure of any kind is not allowed in helping relationships. The helpee is supposed to share, NOT the helper. The way people stress this I can't even tell someone my favorite color is purple, let alone that I have a diagnosis of BPD. And if you absolutely have to disclose something for the benefit of your client, make sure you tell them it's some mysterious client. NOT you.

My last shrink has a completely fused knee since roughly 45 years ago. He cannot bend his left (?) knee at all; his leg is completely straight and he walks oddly and sits oddly. The first time you see him he tells you what's up with the knee. Deals with the 800 lb gorilla in the room. He has appts booked up 7 days a week. People don't avoid him like the plague (but seriously, they should, he's got the most warped mind I've ever seen).

My current shrink, however, the only thing I know about her is that she works the weird hours she works because she has 2 little kids. Nothing else in almost 2 years. Would I like her to tell me something else about herself? Of course I would. I'm human. And frankly she knows almost everything about me, it's sort of more than fair. But do I want to know if she has BPD? I'm pretty sure she doesn't BTW, but you never know. If you're on your meds and doing what you have to do it's pretty easy to pass as a non-crip. Do I want to know? Honestly, I don't think I do. As much as I want to be able to appropriately tell my clients that I have BPD, as much as I think it will allow me to connect with them more, help them to be more compliant (because I'm walking the walk and not just talking the talk) I really just don't want to know. She can keep that little tidbit of info to herself (however curious I actually am). It wouldn't be a good thing to know. It would be too distracting. I'd always be wondering if she's on her meds, if she's OK. An unstable shrink trying to guide an unstable client, now that's just a recipe for disaster that I don't want to try.

55 percent said they would be unlikely to marry someone with a mental illness. Would I date someone with a mental 'illness'? Could I marry someone with a mental 'illness'? I'd like to think I would. I want a passionate activist (Jewish) man. Passionate activist (Jewish) men might just happen to have mental 'illnesses.' However, the unstable/unstable thing has me concerned. If Mr Mysterious Man should happen to have some issues one day would I be able to handle it? Would I be strong enough to be able to help him without it triggering my issues? If we both became messes at once, OMG...

I don't like that I seem to have a double standard. I want to tell my clients that I have BPD but I wouldn't ever want my shrink to tell me if s/he does. I want someone to want/need/love me, accept me for who I am, but there is a possibility that if they told me they had BPD I might just kick them to the curb. I have, since my diagnosis, been in conversations talking about a person (who isn't there) doing something and responded with "Well isn't s/he BP?" in the same way I did before the diagnosis. Somewhat condescending like. As if I'm not just like them. That thought always comes to me in the split second after the words come out of my mouth. But I do it all the time. If I can't fully accept people for who they are, if I have inherent ableism ingrained in me just like ABs, who am I to expect them to treat me w/dignity & respect?

So how does a "crazy cripple" disclose in "a culture of shame, secrecy, and stigma" with all this internal and external ableism surrounding everyone? And how does a crazy cripple shed her ableism? Can anyone tell me? And can someone please give me another term to use besides "mental Illness?" I HATE those words.

I Want You to Want Me

Lately, therapydoc, over at Everyone Needs Therapy has become stuck writing posts revolving around song lyrics. I could do one of those I thought. I should do one of those I thought. I already have two of my own, but they're not nearly as good. I just needed a song is all...

Saturday night I found one. I Want You to Want Me. It's by Cheap Trick originally, but has also been done by Letters to Cleo and Save Ferris according to the desk clerk at the Quality Inn in Toms River, NJ, and Kelly Clarkson and Bon Jovi according to youtube. Who knows who else. This is apparently a very popular song. On my 4th click I happened to find the Letters to Cleo version with the words on there. Don't have to post them and make this longer now. And hey, I just realized after I posted that it matches my new color scheme :-D

How did this song come up? Well there's some history with this song with one of my former roomates who got married on Saturday and I embarrassed her and all of her (our for a time) other former roomates from over the last 3 years and made them all come up to the front of the dance floor and sing it, right in the middle of the party. The DJ didn't have it, so I got the front desk to print out the lyrics, and forced all of the other 4 girls to come up there. It's now on video, us singing it karaoke style.

I thought about the lyrics as I stood up there singing in front of about 80 people. It's about a guy trying to get the girl. But can't it also be about a crip trying to get her/himself a date, or even just plain friendship? Can't it also be about acceptance?

I want you to want me.
I need you to need me.
I'd love you to love me.
I'm beggin you to beg me.

'I'm beggin you to beg me' doesn't quite work, but the rest of it... I've written about this before. I keep in my mind and very close to my heart the memories of sitting in my room and crying because I'd never get a date. No one would ever love me. Why would an AB ever want to be seen in public with a crip? And why would I ever want to date a crip? That would be a fate worse then death (man 16 year olds are dramatic). Those words, they just stuck with me. They match up to my experiences, and the experiences of crip friends so well it's scary. Now I'm not one of those girls who is incomplete without a man. Who bases her whole self-worth on the guy she's with. I had a friend like that once. I wanted to strangle her. But isn't it nice to be wanted/needed/loved? Isn't that what all humans strive for? We're herd animals after all. We thrive on companionship. For G-d's sake, a woman in England is making a public plea to find a date for her son with Down Syndrome. That is just sad. It needs to change. It shouldn't be so hard.

But maybe I don't have to take this so far to the extreme. Maybe we should just be talking about acceptance and friendship? The recent 'spread the word to end the word' campaign put that thought in my head. Our need for companionship can end right there with friendship. You can cry because you don't have any friends. Because no one wants you to be around. No one wants to be your friend because you have a DD and you're a freak.

Didn't I, didn't I, didn't I see you cryin?
Oh, didn't I, didn't I, didn't I see you cryin?
Feelin all alone without a friend, you know you feel like dyin.
Oh, didn't I, didn't I, didn't I see you cryin?

Those words hit home just as much. I spent years without any real friends, although it wasn't as dire. No one wanted me gone. One of my friends said he saw an R-Word campaign commercial on TV. He gets it now. My other friends just roll their eyes at me. Wouldn't it be great if Special Olympics developed a commercial around this song? Does someone want to develop a youtube video? It would be great. I'd post it here.

Yet Another Public Plea-- Court Case in Maryland

The Public Justice Center is looking for organizations interested in protecting the constitutional rights of individuals who receive healthcare assistance from the State of Maryland to sign-on to a brief the PJC will file in the Maryland Court of Special Appeals. The PJC will be filing a friend-of-the-court or amicus curiae brief in the case of David Brooks v. Maryland Health Insurance Program, No. 08-1774. The Maryland Health Insurance Program (MHIP) is the insurer of last resort in Maryland and only provides coverage to residents who have pre-existing or chronic conditions that render the residents uninsurable in the private market. Mr. Brooks suffers from a number of chronic conditions and was insured by MHIP since 2003. In 2007, he was notified by MHIP’s administrator that his coverage was being terminated because the agency no longer considered Mr. Brooks a Maryland resident – despite the fact that Mr. Brooks has listed his residential address asColumbia, Md; his car is registered and insured in Maryland; he pays Maryland taxes; and he is registered to vote in Maryland. MHIP allowed Mr. Brooks to appeal the initial decision but did not grant him a hearing in which he could have presented further proof of his Maryland residency and challenge the evidentiary basis of the administrator’s decision. Mr. Brooks appealed to the Circuit Court of BaltimoreCounty, which affirmed the agency’s decision. The circuit court’s decision is attached to this email. Mr. Brooks has now appealed to the Court of Special Appeals.

The Public Justice Center is leading a group of organizations in filing a friend-of-the-court brief supporting Mr. Brooks. The brief will emphasize two points:

1) The importance of State insurer-of-last-resort health insurance plans like MHIP to individuals who suffer from chronic conditions (i.e., a pre-existing condition makes it almost impossible for uninsured individuals to find insurance beyond the state plan, and lack of insurance can easily lead individuals with a chronic condition into bankruptcy and/or poverty because of an inability to pay medical bills).

2) The essential nature of an agency hearing to the due process rights of individuals such as Mr. Brooks who face termination of a public benefit.

The brief must be filed in the Court of Special Appeals on April 13. A draft of the brief will be available for your review on April 8. If your organization is interested in reviewing the draft brief and signing-on, please contact Matt Hill, hillm@publicjustice.org as soon as possible.

Thanks!

Robyn Kaplan
Medicaid Matters! Maryland
410-707-7845 (cell)

robyn_kaplan@comcast.net
www.medicaidmattersmaryland.org