It's Beginning to Look A Lot Like Fun*Run Time

It's ALREADY that time of year again: The ADAPT Fun*Run for Disability Rights is April 22nd 2012. Maryland's fundraising goal is $8,000 this year. Yes, that's right, $8,000

Donate $1! Donate $10! Donate $100! Donate $1,000! JUST DONATE so we can FREE OUR PEOPLE! http://adaptfunrun.org/runner.php?id=7 I thank you very much for your support!

Wednesday, December 30, 2009

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?

Saturday, December 26, 2009

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.

Wednesday, December 23, 2009

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?

Saturday, December 19, 2009

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!

Thursday, December 17, 2009

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.





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:



Tuesday, December 15, 2009

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!

Monday, December 14, 2009

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.

Saturday, December 12, 2009

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...

Friday, December 11, 2009

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)

Wednesday, December 9, 2009

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.

Tuesday, December 8, 2009

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.]

Saturday, December 5, 2009

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.

Thursday, December 3, 2009

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!

Tuesday, December 1, 2009

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?

Monday, November 30, 2009

I Stand with Physicians for a National Health Program

I was flipping channels earlier and landed on CSPAN, paused for a bit, saw they were reairing a press conference on adopting a single payer system from Wednesday. Then I passed because CSPAN is boring. But I don't have cable and nothing was on and I SUPPORT A SINGLE PAYER SYSTEM, so I watched it. And it was interesting and powerful.

I've never thought of viewing the giant 2000 page healthcare bill currently being debated in congress as a health insurance bail out, but that's what it is. Only 1-2% of Americans will be able to access the public option. Did you know that if someone has employer sponsored healthcare they will NOT be allowed to access the public option should they want it? What if it turns out to be better then the policy they have? Too bad. So this bill is NOT lending to increased competition as congress keeps claiming, but locking people into only what their employer wants to offer and not allowing free mobility between plans. How does this help America? It doesn't. And it will still leave 17-22 million people without any coverage. While that is certainly better then 46 million that is NOT GOOD ENOUGH. Private money and government subsidies will be going to pad the pockets of FOR PROFIT insurance company CEOs who on average make $11 million a year.

I've been a fan of a single payer system since I had to prepare arguments for a debate in class 5 years ago. Did you know that, as those stats I looked at stated, the US and South Africa are the only industrialized nations that do not offer every citizen a minimum level of care? The representatives at the press conference, which was sponsored by the activist organization Single Payer Action, stated that it is only the US, so maybe South Africa has gotten its act together over the last 5 years. Shouldn't we follow suit? As an American, I can arguably state that I am a citizen of the most powerful nation in the world, but yet the World Health Organization lists us as 37th in over all health system performance. We should be ashamed of ourselves. We can do better then that.

Dr Carol Paris, a psychiatrist from southern Maryland, activist and representative from Physicians for a National Health Program spoke of a patient who lost her job and insurance and isn't sure how she's going to pay for necessary surgery. She also spoke of another patient whose employer switched plans to one whom she does not participate in, so this patient is now forced to find another psychiatrist. She believes that a single payer system would eliminate competition from for profit companies trying to win your business by allowing you to see any doctor you want and go to any hospital you want, switching to doctors competing for your care. In this system everybody wins, because people are allowed to switch to/keep GOOD DOCTORS instead of being forced into narrow options of their plans. This forces doctors to be better doctors and will result in patients getting better care. This, she says, is competition she supports. I do too.

If you're a consumer of psychiatric services you know that many physicians / therapists do not accept insurance because of how little they receive. Many, even those with insurance, go without because of this, and I have a feeling that this would change in a climate of a single payer system. More people would get the care they need because more people would be able to afford it.

You may argue that if more people start seeking care and the amount of providers do not increase, this will overload the system, make it impossible for you to get in to see someone when you need. Well I don't know about you, but if waiting a bit longer allows 46 million Americans to get care, keeps between 18-45,000 (depending on the source) people from dying per year due to complete lack of or inadequate coverage, keeps people out of bankruptcy (2/3 of all bankruptcy is caused from uncovered medical costs--an average of $18,000-- and 3/4 of those are middle class insured individuals), allows people to have the luxury (if you want to call it that) of no longer having to choose between buying food or paying for prescriptions, then I'll wait.

There are many more reasons why I support a single payer system, but I want to keep this short. Did you know that there is also a single payer bill that was introduced into congress in January? HR 676. The bill is sponsored by John Conyers (D-MI) and is supported by 88 members of the house. It is only 30 pages instead of 2000 (I haven't read it).

Sunday, November 29, 2009

My View

I was thinking just now of board games. For months I've been meaning to stop by Target and pick up some UNO cards to donate to On Our Own. I don't know why I never got there when the weather was nicer. It's a 20min roll in the chair or a quick bus ride. I even went to another store right there once and forgot. Well last weekend friends of mine were driving there so I tagged along. Now I just have to remember to bring them. I also ended up buying Farkle, a dice game I've become addicted to playing in its online form. UNO is theirs, Farkle is on along term loan, meaning I can take it back whenever I feel like.

Anyway, so I was thinking of board games and my mind wandered to SNATCH, a game I haven't played in years. People would like it if I even knew where it was, remembered how to play. My mind wandered to bringing it in, people asking where I got a game no one's ever heard of. "I got it in a game store in Mall of America. I forget when. One of the times I was there, 1999 or 2002. I think 2002."

One of the times??? People look perplexed always when I tell them I've been there 6 times. Ever play the ice breaker game 2 truths and a lie, where just like it sounds, you go around telling 2 truths and a lie and people have to guess what the lie is? Some standards, I've been to Mall of America 6 times, I grew almost 2in in 7hrs (from surgery, but I leave that part out), and when I was younger I wanted to be a figherfighter (someone once thought that was true). The Mall of America is in Minnesota, and remember I live in Maryland. That's 2/3rds of the way across the country. Who would go there 6 times? It's a mall (with a tiny amusement park and an aquarium inside). My orthopedist was at Gillette. I had 4 surgeries there, and went for 2 just visits. I will always hold a soft spot in my heart for that hospital as odd as that sounds.

Every time we went we spent some time at the mall. My surgeries were always on Tuesdays so I could be scheduled for appointments, xrays, etc on Monday and we always scheduled Sat flights just in case. We had time to kill on Sunday, so we went to the mall. The first time we went to Gillette we tacked a few extra days onto the trip to do some sightseeing. We ended up just seeing the mall, spending 20hrs there over 3 days. My grandma has to touch everything... Eventually we got it down to just 6hrs in one day, hitting up must sees like the Italian restaurant Tucci Benucch (MMMMMMM........) In all those trips I've never been to the aquarium. We always saved it for if we have time, and the people who actually walked the mall got worn out.

My view is if you have to have surgery you might as well have some fun in there too. It's possible to do both, even in a hospital where there are therapy dogs and playrooms to balance out the pain. And a great cookie store at the mall :-) Is it wrong to on some level look forward to going for surgery? I think not. I think that's the way it should be.

Friday, November 27, 2009

The Adventures of Bernard, the Hospital Puppet



More video on how great child life is. I just LOVE Bernard. He has his own website and facebook page as Bernard Chiles (waiting to see if he'll accept my friend request). Don't ask me how I found Bernard, there were so many random clicks involved. I wasn't looking for anything/at anything child life involved at all. I swear.

Wednesday, November 25, 2009

OOPS (wordless wednesday)

So I took the bus to my support group Friday like I usually do when it's nice out, which it was exceptionally Friday. It was a little odd in that 1) the 7:20 driver for that route was on the 6:20 run and 2) the sign stating that the seats across from me were for chairs, old people, etc was upside down! Can you tell? It's blurry I know. Hard to take a good pic on a moving bus. Why I didn't check to see if the one on my side (I was in my chair) was right side up or upside down, I don't know...

Tuesday, November 24, 2009

Looking for a Psychiatrist/Therapist

I read a NYTimes article the other day, Where Can the Doctor Who’s Guided All the Others Go for Help?, about psychiatrists who need their own psychiatrists, written by a psychiatrist. Some of the concern I understand, some I do not. If you live in a small area and most around are former students / patients this could be awkward. Not everyone has that problem, not everyone teaches, but here is a problem much more common, not just related to psychiatrists, but to everyone:

There is also the factor of experience ... "I might have some trouble going to younger colleagues. It’s hard to understand the issues that come up in the course of a life cycle unless you’ve lived it yourself.”

Dr. Rachel Seidel, a psychoanalyst and psychiatrist in Cambridge, said that when people feel vulnerable, “we want someone with more insight than we have.”

“It’s a paradox,” she added. “Do I have to have gone through what you’ve gone through in order to be empathic to you? And yet, I’d have a preference for someone who’s been around longer.”

So far in my life I haven't come across this issue myself. I'm only 24 and it should be another year or 2 before my peers are beginning to be credentialed, but I'm not sure it's all that much an issue. Dealing with family dynamics is dealing with family dynamics. Dealing with depression is dealing with depression. Prescribing meds, big deal. The issue of sex (in both senses of the word) is much more of an issue to me.

When I was looking for a therapist I told the person I'd asked for a referral from it didn't matter to me whether it was a male or a female. I'd had both before, my most immediate past therapist is a male, I have high standards and I just cared that they were good. Told her I trusted her. Turns out I was wrong. I realized while I was comfortable discussing my resistance to dating with him I never would have been comfortable discussing my sex life with him. I'm only comfortable having someone who is committed to being a long term therapist as I know they, like botox, are something I will always have a need for, and this is something I will (hopefully) be discussing with this one. He's also old, about 40 years older then me, but that was not the issue. I'd have a problem discussing this with a younger male and would not have a problem discussing this with either a young or seasoned female professional.

The issue of life experience is something that ended up almost being an issue for me, as I ended up trying to find any reason I could not to like her (didn't work). Why I would do that I would rather not discuss, but makes total sense in hindsight. I was scared of going to someone with no experience with disability. While I agree that depression is depression, the route cause of depression can vary, and in my case the route cause of my depression can quite often be intimately tied to my physical disability. Would she really "get it?" Mentioned past therapist was my one and only disabled therapist and while I always skirted the issue, I knew kids stare at him all the time just as they stare at me all the time. He was firm in telling me that this is a non issue and that the only issue is the type of therapy someone uses. He was right.

All therapists should have cultural competence. Should an Asian client not see a white therapist? Should a Jewish client not see a Christian therapist? Why can't a 52 year old client be helped by a 32 year old therapist, although not a cultural issue? Why can't a crip be helped by an AB therapist? That is a cultural issue. What matters I think is openmindness on the part of both the client and the therapist and the treatment methodology / personality of the therapist. Can you handle a therapist with a dark sense of sarcasm, for example? Can you handle a therapist who answers all of your questions with "what do you think", or will you want to strangle them?

Would I be able to help someone with marital counseling at 24? No, but I haven't been through training yet so maybe I could. Could I help someone with parenting issues? I think so. I was a kid, I have parents, I remember my childhood well, and I have a lot of training in child development. Family dynamics are family dynamics. Observe yourself, observe your friends / relatives dynamics too...

What happened with my experience / cultural issue? Well, #1 it turns out that most of what I am dealing with are people issues, not disability issues, related to dynamics and diagnosis. #2 Right about when I started with her is when I began a total paradigm shift in my conceptualization of disability. So I guess I've just taken her on my journey with me. That's the way it should be. I decided at some point that one of my callings in life is to educate people about disability and that I had no problem educating her too. One of the greatest things I can do in life is to make it easier for her to help someone else to get to where I am, to be OK with their disability. My views, I think, aren't so mainstream and she's been as openminded as a person can be. I don't think she's ever had a problem understanding where I'm coming from. In fact, she gets it so easily, sometimes it weirds me out. My psychiatrist, not there. Frustrating, but he doesn't need to be. In today's society a psychiatrist's job is focus on brain chemical levels, not to guide you through paradigm shifts. Just MHO.

Monday, November 23, 2009

Study on CP & Peer Relationships (passing along 3rd hand)

Dear parents,

I am writing to invite you to participate in an online discussion forum. This is part of a research study about the friendships of children with cerebral palsy (CP).

Results of this study will help professionals (teachers, speech-language therapists, support staff and others) to provide better supports to children with CP to promote their social involvement.

Parents who participate in the study will join in a focus group conversation on an Internet message board with other parents of children who have CP.

If you have a child with cerebral palsy between 5–11 years old, and would like to join in the discussion, or if you have any questions about the study, please contact Adam Bowker at Penn State University. | email: adam.bowker@psu.edu | phone: 814-865-5850

Sunday, November 22, 2009

Talking About Your Disabilities with Your Kids

I was going to comment on Therapydoc's post, Your Depression and Your Kids, but now that I'm no longer depressed as of Friday night (ironic) and can write, I thought I'd make it a post. It also happens that this is the topic for the next blog carnival. TD seems to think that there is no possible way to be brutally honest with your kids about your mental state without negatively affecting their mental state. I disagree. I think being as evasive as she suggests can actually cause harm in the form of self-blaming.

[image description: a dad in a wheelchair reading a book to his daughter who is sitting on his lap]

Says you: Why are you talking about this? You don't have kids.

Says me: I don't have kids. I don't even have a boyfriend (as I said in my last post). I also don't want kids, never have, but as my mom's shrink used to tell her, "Never say never." As my stepfather says, "Life is full of surprises." (I'm sure you get the connection there) I have 2 disabilities, and things like this need to be planned ahead.

That's right, I've said it again. I have 2 disabilities. Both equally impacting. You have to start from the beginning you know, with why mommy uses a chair, crutches, AFOs, waddles, doesn't drive (thus can't pick you up from school like the other mommies), walks/talks worse when she's tired (don't let anyone ever tell you I'm drunk). I don't think anyone would disagree.

Why wouldn't you then handle psychiatric disabilities in the same way? With the same openness and care? The connections all over my brain are fuzzy and the connections between my brain and all my other parts are fuzzy too. They've been that way since the day I was born. Whether this disconnect was caused by an anoxic brain injury or a little "nugget" (for lack of a better word) passed down in my DNA doesn't matter. Fuzzy is fuzzy.

I don't think a day has ever gone by where I didn't know I have CP, didn't know what it was called. I think it's better that way. I can't imagine not knowing. I also know what not knowing does to kids, but for privacy reasons I can't discuss that situation here.

"When mommy was born she didn't stay in her mommy's tummy as long as most babies do. Mommies help babies grow inside their tummies and Grandma couldn't help me finish growing in there, so I had to finish up after I was born. That's harder to do. It's different growing outside of a tummy, you have to grow different, sometimes your brain grows different, and even after you're not a baby anymore you keep growing different." Then of course you emphasize that different is different, not bad, not good, just different. You have green eyes, your best friend has brown eyes, so and so is really good at soccer, and I come with a wheelchair and a nice waddle.

Then of course there's the other one. "Mommy's brain is different in more then one way. Mommy is bipolar. That means that sometimes Mommy's brain might make her really sad and sleepy for no reason. It might make me sad when I really want to be happy, but my brain makes that decision all on its own (emphasizing that it's nothing they did). Sometimes mommy's brain might make her talk a lot really fast and sleep very little (leave the word happy out of it. The last thing you need is a kid who confuses manic / hypomanic states with actual happiness). Everyone needs a good nights sleep. But don't worry, mommy goes to Dr Suchandsuch when that happens and s/he helps me out."

[image description: a brain]

In my perfect world my kid(s) will be able to put a face with that name. My hypothetical kids will have met said psychiatrist so that s/he can explain to them how they help me. If I have kids, when I crawl into bed I want my kid to poke their head into the room and ask me if I've seen / phoned / am going to see Dr Suchandsuch. When mommy's like this she does that. Kids don't need to know the triggers, that probably is emotional incest. Kids don't sit in on your appointments (you sit in on theirs and help co-facilitate explanations). But they need to know why on a basic biochemical level and they need to know that you're getting outside help. If they know grownups are helping then they know it's not their job. But the only way for you to know that they know this is for them to meet the person(s).

I also don't think it's wrong in the elementary school years to show your kids your WRAP. More when mom's like this she does that. Kids that age need concrete information, not abstract evasive information. That's how their brains are programed to process. "My brain's working too fast today / decided to make me depressed today. I'm going to the gym because it calms me down / makes me feel better." To tie in my other disability, "Going to the gym helps my muscles A LOT." DON'T ask your kids what they can do for you, but DO involve them in your WRAP. "I'm feeling depressed today and I looked at my list and decided I think it will help if we go out for ice cream after your homework is done." Kid hopefully knows that putting real clothes on and going out is an A+ strategy. I don't think this is "incest" because you're not asking them to come up with the solution, to "fix" you all by themselves. You're helping them to be able to process your differences effectively and letting them be involved to (I think) a healthy degree. Kids want/need to be involved.

Done with my spiel. I must say it turned out very child lifey.

Saturday, November 21, 2009

I have SEX on the Brain Again

[image description: the wheelchair dude gettin it on with his wheelchair lady]

The other day I read yet another article about sex and disability from England focusing on prostitution. (for others, click here) If you click on the tag prostitution below, you will see that this is a hot button issue for me. I almost feel as though I've said all I can about this issue, except that I want to revisit one thing that was touched on (no pun intended) in the article.

Says a sexual surrogate,

"I see a lot of women with cerebral palsy. Sex is painful for them because they can’t open their legs fully and they get spasms. But if they learn how to relax and experiment with different positions, they can overcome that. Having an excited boyfriend is not the best way to learn.”
I'd have to disagree with that. He seems to make that an absolute truth (the boyfriend part) and it isn't necessarily. TRUST ME, I've thought about this a lot, as I have said issue. Not that I've been able to have first hand experience yet, but I believe in being prepared, realistic, and talking. Hasn't anyone ever heard of talking? Talk to a friend with a disability, a friend without a disability, a friend who's a virgin, a friend who's a slut, a shrink, a physician, your significant other, & why not have a talk with yourself in your head while your at it. If you want to have a satisfying sexual relationship / experiences you need to get over your/society's hangup/embarrassment about sex and start by talking about it.

However, I've gotten a step or 2 ahead of myself. The first thing you have to do is know yourself. Get to know your body in a non-sexual manner. For example, I'm a triplegic and my right arm has a lot more spasticity then my left. When I was little my mom and I figured out that it was sometimes impossible to get dressed if we put my left arm in first, so I'd start getting dressed right arm first. We needed the extra maneuverability of the clothes for that arm. Over the years that has pretty much become a non issue. Spasticity levels change all over your body as you grow, have surgery, and just get old. Keep track of those changes and changes in your general mobility.

What I've done next is take a good look at the images of sex I see in the media all time. I've taken that along with the info about how my body works and spent a lot of think time trying to match the 2 together, figuring out what might work, what might hurt a little, and kept that easily accessible in my brain. I've also noticed that a lot of what looks like "traditional" sex looks like it could be crazy painful, even with liberal amounts of botox in the right places. I've thrown those ideas out the window. That picture above, that's a no go for me.

This is where I've had to stop for now. It's the point where talking needs to start, and I have no need to talk right now. But I do have a plan for the talking part too. The first thing I'm going to do is talk to my physician who handles my pain management. It might be helpful to take some of my PRN medication an hour or so before, it might be a good idea to have a drink before, neither of those may be the thing to do, and/or she may have something else I'd never have thought of. It's not my job to know, it's her's.

The next thing I'm going to do is talk to the dude. Find out if he has any fears about having sex with a crip (if he isn't one). Explain the info I've gathered, my "plan," and find out what his expectations, ideas, and hesitations are. This will likely involve me talking to whatever shrink I happen to be seeing at the time alone first and may involve me dragging the dude to a trained sex therapist with me (totally different then a surrogate). As I said, I'm all about the talking and minimizing pain as much as possible (which involves talking to repeat myself).

I've been told that sex is more satisfying this way then total spontaneity without discussing anything. Getting our signals crossed doesn't sound like my idea of fun, it sounds like stress and unfulfillment, and possibly physical pain. If the guy's too "excited" to work through this with me then he doesn't deserve to get what he wants. End of story. Somebody else will have no problem being patient and I have no problem waiting til they come along.

Who am I, a virgin, to be giving sex advice you ask? Well I'm part way through the process of obtaining certification as a Family Life Educator, which involves training (a 3cr class) in sexuality that I've completed, I possess the bible on my bookshelf (the book THE ULTIMATE GUIDE TO SEX AND DISABILITY Don't have it? Get it) and I have 5+ years of deep thought under my belt (pun intended).

Friday, November 20, 2009

Crip Humor I Guess

So my roomate has a close friend who lives 3 floors up. He is over all the time picking on the both of us. I have another friend like this, it just rolls right off. He certainly doesn't mean anything by it--I am sure of it. Anyway, he asked me this question which required a quick response with quite a bit of wit if I was going to give it right back to him. Except I had nothing. To bad the Trench Warrior wasn't around. Her's is the kind of wit I'm talking about. So I was resigned to answer with "I don't know." Then I said (without thinking I swear) "I'm not so quick on my feet..." Hey, it's a figure of speech.

Why I needed to apologize for my crappy answer I don't know, but as soon as it came out of my mouth I realized exactly what I'd said. He however didn't hear me because he had turned to tell my roomate that he'd asked me thus and such and my answer was...

Then he turned to me and said "What?" To which I was able to say "I'm not so quick on my feet, both litteraly and figuratively." By the way, at the time I was sitting on my bed and my wheelchair was parked temporarily in my bedroom doorway between the two of us! What a great way to recover! GO ME!!! Also, go him for appreciating my humor. Some people respond with a blank stare unable to decide if it's appropriate to laugh or if they'd be a jerk.

Wednesday, November 11, 2009

SERIOUSLY?!?!?! (Wordless Wednesday)

Found through someone's facebook album:


Neon sign says: "NO DRUGS OR NUCLEAR WEPONS ALLOWED INSIDE"

Tuesday, November 10, 2009

21 Year Old Autistic Auditions for British X-Factor

Why have I not seen this before? How did I miss it? Video is from Sept. Anyone know how far he got? Can anyone point me towards other clips?

Saturday, November 7, 2009

Activists, Wear Your Flair!

It all started when I went down to DC and attempted to lobby congress. I didn't get to lobby congress, cause we got there when the whole thing was over, but we ran into Yoshiko Dart on her way out and she gave us each a leftover Community NOW button. I somewhat absentmindedly stuck it on my purse as I didn't know what else to do with it and didn't want to lose it. It's cool. It's also impossible to read what any of those buttons say over on the right, so it is the yellow one and it says Community First Choice Option on the top, CLASS Act on the bottom (both smallish) and Community NOW pretty big in the middle.

The next 2 buttons (well, a button and a pin) came in the mail maybe 3 weeks ago. A friend got them for me in Atlanta. The pin is a small orange ribbon symbolizing CCA awareness and the button is white and says NOTHING ABOUT US WITHOUT US with the ADAPT free our people dude. The pin is between/above those 2 buttons. I got those and stuffed them in this backpack/purse thing I use, not knowing what to do with them.

Lastly, at the ASAN protest I got a black pin with a rainbow brain that says honor neurodiversity. I was wearing it throughout the protest and would have also worn NOTHING ABOUT US WITHOUT US if I'd known we'd be chanting it. I'd had it with me, but it was in the car...

So then I was like I have all these buttons (somewhere I also have an orange rectangle COMMUNITY CHOICE ACT NOW button I have to find) what in the world am I supposed to do with them? A close friend has all of hers around the brim of a hat, this guy I refer to as Kansas Larry had them all over a vest when I met him at the action last April. NAH. Not for me. But you see I already had this one purse with a button on it. Why not add the rest to flair it up? [confused what flair is? watch the movie office space]

Guess what? 2 times in a week someone has asked me about my buttons. Initiated conversations without me having to feel like I'm getting in their face. #1 I was leaving a Halloween party last Saturday (after just having flaired it up) and as I was putting my coat on someone saw my buttons all over out of the corner of her eye. She couldn't even see what was on them, but "I see you have all these buttons. Are you an activist?" Unfortunately I was running to catch a paratransit ride I would have missed had I really gotten a chance to chat with her.

Then today I passed through Barnes and Nobel. A friend's birthday is on Friday (Yes, Friday the 13th) and suddenly I had an AH HA moment about what to get her. An employee asked me if she could help me find anything. I didn't need help as I got her something I already have so I knew where it was, and didn't notice she continued to look at me. "I'm Sorry," she said. "I was just looking at your buttons." I moved my purse so she could get a better view. "I really like the honor neurodiversity one." In my head I wondered what her story is. Who has ever heard of neurodiversity? But I decided not to pry into her business and answered "I got it last weekend at a protest. I went to DC with a bunch of people who are on the autism spectrum to protest Autism Speaks." That always gets people's attention. Say you were protesting Autism Speaks and you look like the bad guy. Say autistic people were protesting autism speaks and you get a puzzled look and a probe for more information. I explained two of the points and let her get back to work.

So activists, WEAR YOUR FLAIR! Wear it everywhere you go, like it was an afterthought, and maybe you forgot it was there. Don't try to bring attention to it or you'll look obnoxious. Maybe it's inappropriate to have flair around at work, maybe it's not, but there's no excuse to leave your flair behind when you go out to dinner, the movies, or to run simple errands. Guys, don't have a man bag? A jacket perhaps? Activists are always looking to educate and it's just that easy.

Friday, November 6, 2009

Mad Pride, Medication & Emotional Support Animals

It all started at the very end of my shrink appointment Tuesday. I'm going to come right out in the open and admit that I've been having serious compliance issues with my meds for a very long time now. So she says (in a non threatening way, completely in passing) "Maybe I should threaten to not treat you. It seemed to work the last time." To which I said "What if I went all mad pride and had a strong philosophical belief against taking meds?" Also, I disagree with her in that although it did work it was very temporarily. I left it at that as I was walking out the door. But I didn't end the thoughts in my head. I chewed on it for hours. I have a stop forced drugging logo on my right sidebar (which leads to http://www.stopforcenow.org ). And I believe that. I don't believe in treatment by way of coersion, which, if I thought she was even the least bit serious, that would be.

I am pro-choice on the medication front. I agree with the Icarus Project that people need to do what works for them. I don't agree with forced treatment. I don't agree with conventional medical beliefs that seem to say that there is a right and a wrong way to cure this "disease," probably because I very strongly believe that I do not have a disease. I don't want that stigma placed on me. In no way am I saying that anyone I come in contact with personally has placed this stigma on me (well not entirely true, there is one person); I feel I need the disclaimer. It's society at large that does this.

I remember the first time I was decently suicidal. I was shrink shopping and having admitted the extent of my noncompliance issues in the past was told by every single one of them that they refused to see me unmedicated. I don't agree with that and in fact now that I'm getting involved in human rights I find it unethical. From what I understand (I got this from an episode of Private Practice) the American Academy of Pediatrics has taken a stance that Drs should not abandon patients whose parents have chosen not to vaccinate. Where is this different? To me, choosing not to vaccinate is dangerous in that it is potentially putting hundreds of children at risk for death from a measles outbreak. Especially children who are imunosuppressed. Choosing not to medicate does not carry that risk. It just so happens that I begged for drugs anyway. I've never really wanted to die (similarly to this, but different in that I've never experienced trauma) so I'd rather not feel like I do. But this was my choice. Again, I am pro-choice.

Medication is just one tool that a person can take or leave when seeking to achieve their own version of balance. But there are many others, like dogs. I've got dogs on the brain again. I don't know how they came up on the drive back from DC on Saturday, I think K brought it up, but we both believe Autism Speaks' gazillion dollars would be better spent on buying kids autism service dogs. We also believe that human health insurance should pay for service dogs as well as vet bills for service dogs at the same reimbursement rate as human doctor visits and/or DME. The pay for powerchairs and powerchair repairs. By extension...

Dogs also came up Monday night with a friend of mine and in my train of thought about Mad Pride. I suspect that if I had a dog and if I was running and if I was doing other things I know I should do I would not need medication. I do not know for fact as I've never had a dog, but from Oreo I do know I would at the very least be able to lower my dosages. However, at the moment I do not have a dog and I do not run and so regardless of tactics I happen to agree with absolutely everyone that I should be taking my meds right now.

[image description: 4 puppies in the grass]

These periodically reoccurring thoughts coupled with Monday nights conversation prompted me to finally look up what a psychiatric service dog does. How is one different from a mobility / seeing eye / hearing /seizure / autism dog? What I found is that there is such a thing as an emotional support animal. Emotional support animals (ESA) are NOT trained anymore then a regular pet dog but with documentation from a doctor or ANY licensed mental health professional you would be covered by the federal housing laws, dept of justice, and dept of transportation. (links to Bazelon Center for Mental Health Law) So you cannot be discriminated against when renting or flying on a plane. However you are not covered under title III of the ADA, public accommodations. So you can't bring an ESA into a supermarket for example. For that you need a trained psychiatric service dog.

What is the difference between a trained psychiatric service dog and an ESA? What's distinguishing? Read this GREAT article. It's something to think about...

Wednesday, November 4, 2009

Wordless Wednesday

A picture from the protest and some linkage to more press

From WAMU, the local NPR news radio Locally-Founded Autism Group Protests DC Walk for Autism

From The Hilltop, Howard University's Student Newspaper Autistic Plea Less Pity

Tuesday, November 3, 2009

LGBT Long Term Care Survey

Haven't looked at it at all, just passing along from FRIDA.

Dear Colleague:

The National Senior Citizens Law Center, Lambda Legal, the National Center for Lesbian Rights, the National Gay and Lesbian Task Force, the National Center for Transgender Equality, and Services & Advocacy for GLBT Elders (SAGE), are working together to raise awareness of the issues facing older adults who are lesbian, gay, bisexual and transgender ("LGBT") and live in nursing homes, assisted living facilities and other long-term care facilities. We hope to identify areas where policy changes will improve care, and to find other older adults, advocates and providers interested in these issues.

The survey is only 16 questions. It should take no more than ten minutes to fill it out. The survey completely protects your confidentiality. (However, we are looking for volunteers willing to be interviewed, so please consider checking that box!)

Click here to fill out the survey: http://www.surveymonkey.com/s.aspx?sm=UPQXC5Gub99IvdRNz83Hwg_3d_3d ; or if you would like to fill out this survey manually, you can print it out from the link above and mail it to:

Nancy Arevalo
National Senior Citizens Law Center

1330 Broadway, Suite 525
Oakland, CA 94612

The deadline for responding to the survey is December 15, 2009.

Whether you are an older adult living in a long-term care facility or a family member, caretaker, social worker or friend, your answers to these questions will help as we work together to fight discrimination, abuse and neglect against LGBT older adults. Specifically, you should fill out this survey if you are:

· A lesbian, gay, bisexual or transgender older adult who lives or has lived in a long-term care facility;
· A caregiver of an LGBT older adult who lives or has lived in a long-term care facility;
· A family member or friend with knowledge of an LGBT older adult's experience in a long-term care facility;
· A social worker or other helping professional who works with older adults.

Long-term care facilities include nursing homes, assisted living communities and senior living facilities.
Again, click here to fill out the survey: http://www.surveymonkey.com/s.aspx?sm=UPQXC5Gub99IvdRNz83Hwg_3d_3d ; and share the survey with your colleagues!

Monday, November 2, 2009

A Blast From the Past Article

I was looking for this exact picture for my postcard and I googled and it was still online here even after over 8.5 years since it was written. The article was written for a local newspaper. I was in MEL from Sept 2001-June 2003 (10th-12th grade) and was interviewed for the article. I think that little bit of hair you can see furthest away is my hair! I owe all my success in disability advocacy/activism to this program and Judy Webster. Oh, and Robert [that's him in the picture along with Jill & Mawadda. I think Carla is the half a face & Keith is the other bit of hair] got in trouble for that remark. Setting a bad example...

Challenged teenagers from Montgomery Exceptional Leaders share their stories

In their own voices or through an interpreter, in halting or quick tones and with or without the help of a temperamental microphone, members of Montgomery Exceptional Leaders made their voices heard last week at a Germantown middle school.

The 10 teenagers represented a contingent of the group, known as MEL, which takes disabled students from high schools across the county and teaches them to share their story with others.

Judy Webster, the program's coordinator, said participants learn leadership and advocacy skills as well as public speaking.

"Because these students, everyone but especially these students, will need to advocate for themselves," Webster said. "[To] let people know what they can do and what they need to do it."

And that is what the students did at Dr. Martin Luther King Middle School.

Lined up on stage, they represented a wide range of challenges. Some were evident, as the students used wheelchairs or interpreters, but others were more subtle, and the assembled eighth-graders were sometimes invited to guess at the particular disability.

The students spoke frankly of the hurt and frustration of being teased and feeling behind in classes, but also about how they had dealt with these issues and what their hopes were for the future.

They explained the accommodations made for them in school, including elevator keys, note takers or a quiet room to take tests, and how all of that helped. But most of all, the students emphasized the significance of being accepted and understood by others and the importance of striving for dreams.

It was that positive message that led parent Brenda Martin, whose own daughter suffers from learning disabilities and Tourette syndrome -- a neurological disorder characterized by outbursts and tics -- to arrange the visit to King.

"These kids are so good as examples because they're cool with their disabilities," she said.

For most of the hour-long presentation, the audience listened quietly but other times the speakers drew laughter, questions and supportive comments.

Robert Tomlinson, a senior at John F. Kennedy High School suffering from cerebral palsy -- a chronic disorder impairing control of movement -- joked with the students. He demonstrated the benefits of his wheelchair -- its speed and reclining back, for example, "that's supposed to help me rest my back," Tomlinson said, "but sometimes I just don't feel like participating in class."

The audience cheered appreciatively.

Montgomery Exceptional Leaders visit about two elementary or middle schools each month once they have their speeches down, Webster said. They also produce a video and conduct workshops with support from the Association of Retarded Citizens.

"The goal is to have schools use a MEL visit in very constructive ways to promote awareness of disabilities and teach advocacy to all students," Webster said. Teachers receive classroom materials to help them follow up on the messages they hear in the presentation, which are aimed at listeners of all kinds.

"Just because I have learning disabilities doesn't mean I don't want to do the same things you like to do," Debra Wilensky of Wootton High told the students.

Said Joanna Yen, a Wootton senior with cerebral palsy: "If you have a disability, don't be afraid, because if I can do it, you can do it too."

King Principal Carrie Miller was "very impressed with the students who came out to visit us. ...You could tell from the audience behavior that they were absorbing."

The teenagers who make up MEL believe they both educate their audience and gain confidence themselves as they share their stories.

"First thing when we had this meeting is that we had to accept this disability," said Carla Mendes, a junior at Churchill High with a speech and language disability. "We had to accept it and realize that it was just nature and that made it easier."

The disabled students then pass that feeling on, Mendes said. "Giving the message to the kids, it's a real eye-opener, seeing how the world is," she said. "It shows them that everyone is normal, they're just different."

"I think they [the audience] walk away with some messages, even if it's just for one day or one week," said Jill Bayder, a senior at Churchill who spoke about her problems with depth perception.

Marci Michael, a teacher for the deaf at Rockville High School, has been involved with the MEL program for five years and has seen it change lives on both sides. She remembered one student in particular who had difficulty dealing with his disability before becoming involved with the group.

"He has absolutely become more comfortable with himself and knowing he can be successful even with a difference," she said.

Eric Payne of Paint Branch High School is in his second year in MEL and said he no longer gets nervous when he speaks from his wheelchair about his cerebral palsy.

"I just share myself," he said.

From the stage, Payne emphasized his abilities rather than his disabilities, talking about his involvement in various groups.

"I think that being active is good because no matter what my limitations are, I try to do my best," he said. "I don't know what 'give up' means -- what that means is just because I can't do something doesn't mean I can't keep striving."

Sunday, November 1, 2009

What Does Disability Mean to YOU?

VSA Arts wants to know for their collaborative art project!

Collaborative art project - What is Disability?

What’s the Art Project?

Join people from around the world and send in a postcard documenting your interpretation of disability. All languages accepted. Print the postcard template and create a visual representation of your experiences, impressions, and perceptions. We’re taking a creative approach to investigate how many different ways people will interpret the same word. The deadline for receipt of postcards is February 5, 2010.

Who Should Participate?

You! We’re looking for people of different cultures, ethnicities, geographic locations, and abilities. This is for anyone. You do no have to consider yourself an “artist” to participate.

What’s the cost?

The cost of a stamp! We’ll be creating an exhibition–both online and in Washington, D.C.–to represent your submissions as part of the 2010 International VSA arts festival. Mail to: Disability Postcard Project c/o VSA Arts 818 Connecticut Ave. N.W., Suite 600, Washington, D.C. 20006 USA

To me, one of the main parts of disability is CREATIVITY coincidentally and I already have my design in my head! I do have one problem in that the template does not have measurements and I will be using word to create my postcard and then printing it out on cardstock. Anyone know the dimensions of a postcard?

The picture above is of something I also did on word in July 07. I call it Wheelchair Pop Art. It was also posted here.

Blog Widget by LinkWithin

Blogiversary

Get your own free Blogoversary button!
 
design by suckmylolly.com