Have YOU Written the Governor Yet?

I wrote mine on some old bright ORANGE (If you're an ADAPTer, you'll get it) personalized stationary that I found so that it will STAND OUT. Remember, the Governor's address is:

100 State Circle
Annapolis, MD 21401-1925

Here is my letter (I hope he can read my messy cursive):

Governor O'Malley:

I am writing in response to the current budget crisis. I understand that some tough decisions need to be made in this economy but you must look CAREFULLY at every cut you make. Between March and November over $17 million have been cut to the MHA budget for community services with little to no funding cuts to state inpatient facilities. As mental health consumer I am writing to beg you not to cut funding any further as it has been well established that appropriate community supports can stabilize psychiatric symptoms better then institutional settings.

Not only are community services more effective, they are also CHEAPER. The cost per person per year in a state psychiatric facility can be over $200,000 while the statics I received state that services through a wellness and recovery center is about $1000 per person per year. I estimate though that the wellness and recovery center I attend twice a week operates at about $200 per person per year while providing a level of acceptance, friendship, & support higher then with any other service I have tried over the last 14 years. There have been plenty of times over the last 6 months where seeing friends I have met through the Towson On Our Own center was my only motivation to leave my apartment.

It has been my experience that the programs with the least funding supports are the first to have their funding pulled. Keeping programs such as these operational will keep people moving & motivated during these tough economic times. I can't imagine what could happen to me should this support disappear and I worry about people who are uninsured that use wellness and recovery centers as their only resource in dealing with their psychiatric issues.

I urge you Governor to be fiscally responsible and supportive of the citizens of Maryland by not further cutting funds for community mental health services.









Cheryl *censored*


The next letter I need to write is to Senator Mikulski to thank her for sponsoring Rosa's law. She is my Senator after all. I've been meaning to write this for over a month, however I don't have all the info I need in order to write it. I want to get in EVERYTHING. I want to write 'hey, thanks so much for sponsoring Rosa's Law & supporting disability rights, you could really show your support if you signed onto...'

Someone help me with the bills I need please. I know the Community Choice Act and I know the CLASS Act and the Community First Choice Option, but what else? Isn't there a restraint and seclusion law? What am I missing?

Write the FDA About ECT

From Linda Andre, Director of the Committee for Truth in Psychiatry, found on the JFA Blog, so sorry I found out so close to the deadline:

Dear Friends and Fellow Advocates,

Many of us in the disability rights movement, especially those of us living with psychiatric disabilities or labels, have good reason to be concerned about ECT (shock treatment): We've had it or know folks who have and we know that psychiatrists aren't honest about its permanent adverse effects. We also know that shock is frequently forced on people who say no to it.

Now there is something all of us can do about shock: we can tell the federal government to investigate it for safety.

The government has the power to do this through the Food and Drug Administration, which regulates the machines used to give shock. (For all intents and purposes, the machines and the treatment are the same thing.) Did you even know that the shock machine has, for over thirty years, been exempted from the scrutiny that all other medical devices must go through? That it has never undergone even one clinical safety trial, and that the manufacturers have never provided nor been asked to provide a single shred of evidence that their devices are safe? It's true. (I tell the whole story of the battle between doctors and patients over whether shock should be investigated or not in my new book "Doctors of Deception: What They Don't Want You to Know About Shock Treatment" from Rutgers University Press, http://doctorsofdeception.com)

In other words, a generation of shock patients have been experimented on without their consent. And they've submitted to a procedure without knowing its risks.

But those of us who've had it know that shock always causes permanent memory loss, brain damage and cognitive deficits. And this often results in permanent, preventable iatrogenic (doctor-caused) disability.

That's why organized shock survivors and our allies have been lobbying the FDA for a safety investigation of ECT for over 30 years, without success. The American Psychiatric Association opposes an investigation.

Now the FDA is being forced to take action; it can no longer delay a safety investigation of the ECT device (known as a PreMarket Approval Application in FDA language) but it will not risk running afoul of the APA. As a way out, it is looking at simply administratively reclassifying the shock machine from Class III (the high risk category for medical devices which have not been proven safe and must be investigated for safety) to Class II (the low risk category for devices such as X ray machines and mercury thermometers). If it did so, the ECT device would never, ever have to undergo any clinical trials. Reclassification would mean the FDA agrees to accept the APA's word that shock is safe, without scientific evidence.

As it ponders its next move, FDA has done one good thing: It has asked for input from the public.

It has opened an official public docket on ECT and by law must read and consider everything sent to it. But comments will only be accepted up until January 8, 2010.

It is important that all of us who are concerned about the rights of labeled and dislabeled people write. The comment can be about personal experiences of yourself or others or simply an appeal to science, logic, and the FDA's duty to protect patients. A good point to make is that if the FDA administratively declares shock safe without an investigation, patients will not have the information we need to make our own decisions about what happens to our brains and bodies. Another good point is that shock is often administered involuntarily, and since shock machines are the only Class III medical devices that can be used on a person against his or her will, the FDA has to be more cautious in regulating these devices, not less.

A short comment would be as follows:

I oppose the reclassification of the ECT device to Class II in the absence of adequate scientific evidence of its safety, and request that the FDA call for PreMarket Approval Applications for the device.

Comments can be sent either by mail or electronically, but in either case must include the docket number, which is FDA 2009-N-0392.

The address for written comments is:

Food and Drug Administration
Dockets Management Branch (HFA-305)
5630 Fishers Lane, Room 1061
Rockville, MD 208252
Re: Docket #FDA 2009-N-0392

Submit electronic comments at: http://bit.ly/FDAECT

Please copy, forward and snowball this message! Every comment is counted and every one is important.

----------------------------------------------------

My letter:

I'm writing in response to docket #FDA 2009-N-0392 As a mental health consumer I am horrified that the manufacturers of ECT devices have never been required to submit PreMarket Approval Applications. This makes me physically sick as this is one of the most invasive medical devices currently in use and patients are continually subjected to ECT against their will. EVERYONE has a constitutional right to have control over their own body and people should not be forced to waive this right just because they have a disability. EVERYONE should have the ability to be fully informed about all medical procedures that are preformed on them. This cannot happen without rigorous testing of the ECT device.

I oppose the reclassification of the ECT device to Class II in the absence of adequate scientific evidence of its safety, and request that the FDA call for PreMarket Approval Applications for the device.

And the winner of the $25 3E Love giveaway...

...is Kara.

Please contact Stevie via facebook or the 3E Love website (that is brand spankin new and AWESOME) to claim your item(s). Not that my opinion matters, but I suggest buying Ts for your pugs. It'd be adorable. Any chance of a picture of you in your and/or with your and/or your dogs in their merchandise?

I'm Hosting the 62nd Disability Blog Carnival!!!

Penny needed a host for the next one & I decided to volunteer. She needs hosts for all of 2010 so stop by the Disability Studies blog and sign up! The date of this carnival is Thursday January 14th and the submission deadline is Monday January 11th. You can post links here, over at the Disability Studies blog, or facebook message me if you're my facebook friend. Also Penny says that if you put Disability Blog Carnival in the title of your post she always finds it.


If you couldn't guess from the picture, or can't see the picture, the theme for this one is Holidays.

[the picture is the Easter bunny dressed in a Santa coat, Santa beard, wearing antlers and a witch hat with a 4-leaf clover on it, turkey feathers behind and a pumpkin besides with heart shaped eyes. It says 'It would save me a lot of trouble if you'd put this on your fridge and leave it up all year...' I don't love the picture, I'm Jewish, & I guess the 6-pointed star as the nose of the jack-o-lantern is for that, but that's lame. How about a Magen Dovid necklace? Some bling... but anyway, it illustrates my point BEAUTIFULLY]

I hope no one has done this one before, I'd hate to repeat topics. You may be wondering why I chose this theme when the holidays will be over. Well I say the Holidays are NEVER over. There is at least 1 holiday during every month of the year except for June (unless you want to count Flag Day here in the US) and August. This carnival, for example, is between New Years and Valentines Day.

So... tell me your favorite holiday. How you spent these past holidays. How your/your kids disabilities impacts your holiday celebrations. Why you HATE holidays if you do. How you prepare for holidays. Your weirdest holiday experience. The possibilities are endless!

I have hosted 2 carnivals in the past. The first one was on adjectives and the second was about things that are therapeutic. Last time I felt unloved because I got so little submissions (I think, & I think Penny would agree, that carnival enthusiasm has dwindled). Don't do that to me again! Submit! Remember, you don't have to submit new posts, they can be years old if you want. I've submitted old posts to the carnival many times in the past.

Happy Blogging!

The Braidel

I know Chanukah's like almost over, but I just had to post about the Braidel. If it wasn't already too late to ask for presents I'd ask for one of these.

From Religion News Service:

A dreidel for the blind spins a new, year-round lesson

LAKE OSWEGO, ORE. — For centuries of Hanukkah celebrations, the dreidel has served as both children's toy and religious symbol, marked with Hebrew letters that stand for “a great miracle happened there.”

Artist and Jewish scholar Marsha Plafkin Hurwitz's version of the four-sided top is more than child's play. It's also a conceptual sculpture, disability aid and sensitivity training tool.

She fashioned a metal dreidel featuring raised Braille bumps several years ago. First marketed as modern Judaica, “The Braidel (The Braille Dreidel)” joined the collections of the National Museum of American Jewish History and the Jewish Museum of London. Now it's finding fans among disability-rights advocates.

Hurwitz, a graduate of New York's Jewish Theological Seminary, is now spinning it off as a classroom game for all ages, with input from Portland State University's Project Braille program.

“It's taken on a life of its own,” Hurwitz said, leafing through a prototype of The Braidel Game manual at the kitchen table of her suburban home south of Portland, Ore. “This is something for Jews, Christians, Muslims, anyone who wants to engage how their tradition has treated disability.”

By making a tradition from the Jewish festival of lights accessible to the visually impaired, Hurwitz has set a much-needed example for the entire community, said Becca Hornstein, executive director of the Arizona-based Council for Jews With Special Needs, who shared the Braidel with the Jewish Special Educators International Consortium earlier this year.

“We're an old, old religion, but only in the last 25 to 30 years has there been a civil rights movement for people with disabilities,” she said. “Before that, people with certain disabilities were cared for but not really integrated into a lot of Jewish life. Bravo to Marsha for taking a common, everyday item in Jewish life and modifying it so that a person with a visual impairment can play it without thinking about it, without feeling singled out.”

Hurwitz took some artistic license with her design: the Braidel has a rounded base, rather than a dreidel's traditional sharp point , to prevent it from creating a safety hazard for blind or blindfolded players. She says she borrowed an abbreviation used on Israeli dreidels for “a great miracle happened here” to show players that miracles can be personal, everyday experiences, not just distant events to occasionally commemorate.

Sales have increased leading up to Hanukkah, which begins this year at sunset Dec. 11, but Hurwitz said she designed the Braidel for year-round use, both within the Jewish community and beyond.

Sold through Hurwitz's Web site, Art as Responsa (www.art-responsa.com), the Braidel costs $24; the game, which comes with blindfolds and playing chips, runs from $75 for four players to $375 for a classroom set. Eighteen percent of proceeds are donated to Helen Keller International.

Also, here's a great Chanukah flash mob:

My 2-Year Blogiversary--3ELOVE GIVEAWAY!!!!!

[image description: the 3elove logo, the wheelchair heart dude, it says 'wear your heart on your sleeve']

Today is the 2-year anniversary of my blog, although it's been less then a year since I switched from disaboom to blogger. This year, like last, I started computing numbers in mid-November and have managed to make this my 300th post. I'm not feeling as sentimental as last year and have recently set a goal to have more reader participation, so I decided to try something new in honor of my 'blogiversary'. In honor of my blogiversary I have decided to have my first giveaway. Stevie Hopkins from 3elove has generously offered a $25 (US) gift certificate for me to raffle off to one of my readers.

Here are the rules:

1. Stevie has decided he wants everyone to comment and tell us what the symbol means to you. That gets you one entry.
2. To get a second, join 3elove's facebook fan page (I hope that link works) and post here so that we know. Stevie will then verify.
   
3. For a third, promote this giveaway on your blog and then come back and post the link. These must be in SEPARATE POSTS for the raffle to work correctly.
4. If you choose option 2 and/or 3 but skip step 1 then your entries are invalidated.
5. You CANNOT post anonymously. If I have a whole bunch of anonymous posters, how am I supposed to know who won?
6. The contest runs from now until 11:59PM US Eastern time on the 21st. The winner will be chosen by the randomizer.

Some information about 3elove from their website:

3elove means "Embrace diversity. Educate your community. Empower each other. Love life.” - Annie Hopkins

3E Love was founded in 2007 by Annie Hopkins (who sadly passed away earlier this year), her brother Stevie, friends Eric and Chris, and mother Leslie. The mission of the company is simple: to create and bring to market products and services that embrace living life no matter the obstacles, and by doing so, educate society and empower those with disabilities to love life. Their symbol, the "International Symbol of Acceptance" or the "wheelchair-heart logo" is the drive behind much of their goals and products. It is a symbol of society accepting people with disabilities as equals and a symbol that people with disabilities accept their challenges and even embrace them. By replacing the wheel with a heart, the stigma of the wheelchair is also removed, and it can be a symbol for people with any disability or impairment. It is about the person, not society's perception of their lack in abilities.

I first saw the original 3elove t-shirt on a facebook photo album from Chicago's disability pride parade and I was like DUDE that's SO COOL. That's Annie in the chair to the left. Then somehow I found out about the fan page and I've been a fan ever since. I sadly do not have any merchandise myself, but I pine for a hoodie when I have the funds. Look at the picture to the right (that's Stevie in the chair). Isn't that a lot of awesome stuff to buy? (am I over marketing?) Check out the 3elove store! Clothing Items come in a wide range of sizes from kids XS to adult 4XL, so if you're not "standard-size" There's still something for you! New as of this month there is even a 3elove shirt for your service dog. How cool is that?!?! Stevie also ships internationally so If you're an international reader you can still enter!

I hope to be able to giveaway more disability merchandise or art, jewelry, etc made by a disabled artist every 3 months. Have something to raffle? Let me know!

Researcher Seeking Pictures of People with Mobility Impairments

I've been very bad at keeping up with facebook over the last 6 weeks and just found 2 things of interest that were posted ages ago. First is that ADAPT has put together a thank you note for Senator Tom Harkin. He does a lot of work on our (ALL disabled American's) behalf. Please sign.

Second, Rosemary Hughes, a researcher at the University of Montana’s Rural Institute, is seeking photos of active persons who use assistive equipment for walking (canes, crutches, walkers etc) for use in a project, "Motivating Smokers with Mobility Impairments to Stop Smoking." The photos will be used to illustrate a DVD and promotional materials for a smoking cessation program designed for people with disabilities. The Rural Institute is partnering on this project with researchers from Brown University and The Myriam Hospital in Rhode Island. The project is funded by the National Cancer Institute. The Rural Institute does great work on disability related research and they would be conscientious about using your photos.

So, do you have awesome photos of yourself or friends who use equipment for walking? It would be great to have the photos show your equipment as well as you. Rosemary is looking for about 25 photos and you can email her at rhughes@ruralinstitute.umt.edu. Be a star and help people quit smoking! Rosemary would love to share more information about this important study with anyone who contacts her about it. Thanks so very much!

Should I send in this picture? Just Kidding! It's a pretty bad picture...


P.S. The 61st Disability Blog Carnival is up! We need hosts for the next year. Please contact Penny.

More Button Experiances

I'm starting to feel like Eva, although I don't have a camera hidden on my chair :-)

It's a weird feeling to realize that someone is staring at you without actually staring at you. I'll get used to it one of these days. Yesterday in the elevator at the mall I noticed a group of adults with intellectual disabilities being herded around (link to Ashley's Mom, and oddly enough in my case as well the caretakers were african american women). We all squished into the elevator to go down from the 3rd to 2nd floor. All of a sudden I noticed a caretaker that was next to me staring at my lap. OH! MY BUTTONS! I realized. I moved my arm so she could get a better look. Logically that's what I do now when someone's staring at my lap. I move my left arm out of the way and/or readjust my purse so that the person can get a better look. This person didn't ask any questions or make any remarks. We got out of the elevator and I went on my way.

I rearranged my flair after I got a new button at the Action Annapolis meeting Tuesday. It's yellow and black and says "HUMAN RIGHTS in MENTAL HEALTH." This evening I was fumbling with my purse looking for my debit card so I could pay for my groceries and the cashier says "I like that button; human rights in mental health."

So I told her about the rally and we briefly spoke about the budget cuts. Then I had to sign my receipt and she says ever so randomly "You know they used to beat people who were left handed." [fun fact for the day, 90-something percent of all people with CP are left handed] I replied that they used to tie that hand behind your back, and then asked her if she was a psych major. Who else would be that engaged? "That," she said "and I have both personal and professional experience." I don't remember if I said anything but I gave her an 'I hear ya sista' nod. As she was handing me my bags she said "It's so expensive, and I even have insurance." That of course got another nod from me as well as a "yeah..." in an 'I hear ya sista' tone. As I rolled away I told her the date and time of the rally, but really, how many people are getting up that early to schlep to Annapolis? She told me to tell her how it goes, and hopefully our paths will cross again so that I can. I don't know her shifts. But if we do, I think I'll invite her to On Our Own.

It's nice to really connect with people, and who knew all you needed was a button (or 6)? A guy even stopped me in the lobby on the way back up here...

Write the Governor! Now!

Tuesday I went to an event sponsored by On Our Own Maryland and MDLC. It was a kick off event for Action Annapolis (AA), a lobbying / policy educating day / rally which will be held January 20th (a Wednesday). We will be meeting in the Miller Senate office building (11 Bladen St) at 9:00am. If you would like more info just post a comment to this and I will point you to the right people.

Prior to AA day we would like people to bombard the Governor with letters. You see we are still in a huge budget deficit and unlike most states the Governor has full say on all budget matters. The legislature can strongly suggest that such and such be done, but ultimately he has the power to say "the hell with you" if he wants to and go rogue. Below is a handy letter writing prompt that was given out at the meeting. I suggest that the letters be hand written on brightly colored stationary. This really stands out in the pile. Who writes anything handwritten nowadays? I wish I remembered the statistic on how much more attention those letters receive as opposed to emailed form letters. It's a lot.

Tips On Drafting & Submitting a Letter to the Governor about the Mental Hygiene Administration (MHA) Budget

(sample letter)

Send Letters to:

The Honorable Martin O’Malley

100 State Circle
Annapolis, Maryland
21401-1925

*NOTE: the letter should NOT be longer than 2-pages (typed single-sided).

Below is an example of a sample letter:

*Sample Letter*

The Honorable Martin O’Malley

Chairman of Senate Committee on Finance
100 State Circle
Annapolis, Maryland
21401-1925

Re: Requesting No Cuts to Community Mental Health Services

Dear Governor O’Malley:

• First say: “I am writing this letter as a mental health consumer / advocate / family member. I am requesting that no further cuts be made to mental health community services. If cuts must be made, then please make cuts to MHA inpatient facilities instead of community services . . .”

• Then, explain why mental health community services are important. Talk about your personal experiences receiving mental health community services. For example, you can discuss how these community services are recovery-oriented. You can also mention how essential/important community services are to your recovery. If you experienced difficulty obtaining community services, you can talk about how under-funded they are now and how important it is that more funding is not cut from vital community mental health services.

• If you are recommending that funding for MHA inpatient facilities should be cut over community services, you can talk about your personal experiences in psychiatric facilities. If you were treated poorly in state facilities or if your rights were violated, etc., you can speak specifically about your experiences in these facilities and how inpatient facilities do not promote recovery.

Sincerely,

(your name)
(your address)

Friends Wordless Wednesday

I got this in a chain email. There were other good ones there too, but I feel this one in particular is very applicable to this blog. It reminded me of and is very relateable to this.

Quote Says "The most memorable people in life will be the friends who loved you when you weren't very lovable." There's a picture with it too.

The Minds of Little Kids...

When I was a little kid listening to the radio in the car I would always get confused by traffic reports. Why would they always announce "disabled cars?" Why would other drivers need to know where disabled cars are? To me disabled cars were cars with handicapped license plates (like ours), not broken down cars. This confused me for years. Especially because if people really did need to know where all the cars on the road with handicapped license plates are, how come our car was never mentioned on the radio? How come no one ever called in to let people know about us? It never made sense to me to call a broken down car a disabled vehicle. Disabled comes from disability. I have a disability (now 2). But I am not broken down.

[image description: the kenguru electric car. Now that is a disabled car.]

It's Snowing Here in Maryland

The last 2 winters I've written posts about ice; I guess it's time I write about snow. Its been snowing for at least the last 6hrs if not longer. The flakes are arguably the biggest I've ever seen and they show no signs of slowing down :-( Usually the first snow of the season is small, melts as soon as it hits the ground. Not today. My roommate said her parents (an hr SW) already measured at over 3in.

I HATE snow. I hate it, I hate it, I hate it!!!!!!!!!! Was that clear enough? I have never liked snow. As a kid people thought I was weird, but as a gimp it's just not conducive to anything good. It can get very hard to walk in, especially since my ankle fusion because it's now harder to walk on uneven surfaces then it was before. Ice is a BIG no-no both before and after. I slip too easily. Did you know also that the motors on my chair are not covered up? They're completely exposed. Everyone always tells me to watch the joystick, that it can short if it gets wet. Well, I've never had that happen (even that time in July), but I did once have my motors short when I tried to go out in snow that was too high. Don't let snow touch the bottom of your chair. Motors cannot get wet. Lesson learned. Another thing I've noticed about snow is that particularly after big snow storms large piles of snow tend to get shoveled / plowed into the handicapped parking access aisles. Can you say GAAAAHHHHH? It often takes days after everything else for those piles to completely melt.

So how about you? Do you love snow or HATE it? Do you find that it impacts your / your kid's disability? Any tips for managing snow with a disability? I'm sure lots of people would like to have them.

I Almost Forgot Today Is UN's International Day of People with Disabilities

[image description: the UN symbol. It says UNITED NATIONS enable]

I haven't seen any posts. Well, scratch that. One. I feel like it's my duty to write about the Convention on the Rights of PWDs, but I forgot the USNUSP teleconference so I know nothing about it. Turns out though I was thinking of writing a post on Susan Boyle--I live in the USA, she lives in Scotland, loose way to make a connection, I know, but any commemoration is better then none. The original title of the post was going to be "Susan Boyle, I Want Your Memoir." I'm sure it's in the works, and I'll be one of the 1st to preorder.

I was thinking about how I heard she had the most sales of any female artist EVER on a release date. Media making the point that you don't have to look like Brittney apparently. No one is snickering now. I was listening to clips on iTunes and I won't be buying the album. If it was just show tunes or something I would, LOVE her voice, but it's a weird mix, some songs are odd for her I think. I will however be buying 2 songs-- 1) I Dreamed a Dream. As much as I hate to say it, I find it inspirational. Maybe not the words as much as the title and the connection. The second is You'll See because she's said that's her inspiration.

You'll See is her dig at all the people who used to beat her up as a kid and verbally abused her because she has at least 1 LD and she was different. That's what I was thinking about. I was thinking about how she has an opportunity to do so much good in the world. To turn that around. Not that 12 year old nasty kids are going to read her memoir, but if enough teachers do and enough teachers feel empathy (NOT sympathy) and begin to teach character, things will slowly turn around. Susan has the ability to be a catalyst for so much change all over the world now that she is an international superstar. She seems comfortable enough talking about her past and I hope that continues.

So this is my contribution to International Day of PWDs. If you know of any others out in the blogsphere, please comment and point me in that dirrection. Leave a link. Thanks!

I'm looking to expand my readership and increase the amount of comments that I get. Any of you successful bloggers have any tips for me?