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 29, 2010

Happy Early New Year


From both me and Georgina Dollface. Thanks for letting me "borrow" your doodle!

Monday, December 27, 2010

My Non-Existent Trauma

I'm writing this for someone I know in real life; someone who reads this blog and comments profusely. This person lives across the street. I'm not usually this obvious in calling people out, but in this case I need to be. You still wouldn't be able to google her and have this pop up, so I feel her identity is adequately protected. I am writing this because I don't know what else to do. Repeated conversations over several months have not worked. Maybe a blog post will? I can't say you haven't gotten the hint because I haven't been hinting. I've been straight up. [BTW, I welcome comments from anyone]

I am going to say this for hopefully the last time, because I'm getting very frustrated--
I DO NOT HAVE A TRAUMA BACKGROUND.
Period. The end. I spent most of my last therapy appointment discussing this (you're not the only one who has mentioned trauma in relation to me) and
I DO NOT HAVE A TRAUMA BACKGROUND.
Ok, so that wasn't the last time I said that because I just said it again... but hopefully now it is.

My shrink (who I have been seeing faithfully for the last 3.5 years) said that she has actually been quite surprised that I don't have a trauma background given everything that has happened in my life (both disability and non-disability related). I've got a long list of things that could have had a lasting traumatic imprint on my soul that haven't. I guess you could say I'm rather resilient, which is not a word I would have ever thought to pair up with Cheryl until just now. Not a part of my identity at all. She said
"It's not something that's ever entered my mind with you."
This however has not been enough to end the incessant badgering. It's where I'm at a complete loss now. Because when I asked my shrink what I needed to say to this person, she said "Tell her I've had extensive trauma training and it's not something that's ever entered my mind with you."

I know, I keep repeating myself, but maybe if it doesn't sink in the first time, it'll sink in the 3rd? She got it the first time by text immediately following my appt while I was waiting on paratransit. That first time I (we?) was (were?) immediately invalidated, and that's something you just don't do to me. It's one of, if not my biggest pet peeve, invalidating me, what I feel, what I experience, how I perceive things. If you want to talk trauma, this is my trauma. And this. This too (the first paragraph only) is all connected. Same person involved. These are the incidences that have led to panic attacks and nightmares.

I've thought about this continuously over the preceding 8hrs before starting to write this. Maybe I have experienced trauma. Fine. I give up. I'll tell you what you want to hear if it'll make you stop. Being brushed off for seven years, when I knew I needed more extensive and/or differently tailored psychiatric treatment caused trauma. This woman above caused trauma. Maybe the physical therapist who dismissed my pain (that was bad enough to make me cry) as me wanting to get out of therapy, when I actually had a post surgical complication caused trauma. She got fired FYI. Oh yeah, there was that 5th grade art teacher too (I needed a hell of a lot of psychotherapy to deal with him)... But it's not the forced therapy or sending me to the vice principal that caused trauma, it's the dismissiveness. If you can't see it, it's not there. NOT TRUE!

My friend, not wanting to listen to me, seems to want to think that having a physical disability, and everything that comes along with it, is deeply traumatic in and of itself. NOT TRUE EITHER! How do I explain this? It took me another 4hrs after my appt to come up with it.

Saying that experiences directly related to cerebral palsy -- PT, surgery etc -- are inherently traumatic is like saying experiences directly related to being black -- learning how to style black hair (which I hear is difficult), having someone cross the street when they see you coming their way on the sidewalk -- is traumatic. Now, I am clearly not black, so correct me if I'm wrong, but in relation to the CP stuff, my shrink and I said the same exact thing at the same time (that's a first for that)
These things weren't traumatic, they were MY NORMAL.
Having twice weekly physical therapy starting at 6mos old, needing to be taught how to roll over and sit up and walk up and down stairs wasn't traumatic, not unless you count having to go to hebrew school on Sunday mornings as "traumatic." Or having to do the dishes, or sitting through 10th grade geometry class as "traumatic." All kids have to do things they don't want to do. Heck, all adults have to do things they don't want to do. It's just the way life is. It's not "trauma." This is trauma.

And no, I am not diminishing my trauma. Hell, why would I do something that is my own pet peeve? Don't you do that to me. PLEASE!!! Would you tell a black person that the fact that they are black means that they experienced trauma? Would you tell a proud black person, who cherishes their identity and culture that they are denying their trauma? Then why do you continue to disbelieve me?

Friday, December 24, 2010

Another Round Up

ETA: An old post of mine, an old research paper to be exact, Tiny Tims & Supercrips, was quoted here the other day, although in an effort to change the link to this blog from my old one, it no longer works. I still think it's cool, and almost missed it, except that I was reading The Goldfish.

First, I was cleaning out some very old email and found this:


The email said that this was done with a typewriter and that the artist has CP.

Next, I don't remember emailing this poem to someone, or even having read it 2 years ago, but apparently I did. It was recited at the disability pride parade, and is good.

Third, sorry Joe, you non-blogger you, you're off my blog roll because I've added Georgina Dollface (swapped one LP for another... huh... didn't notice that at first) She commented on this blog once, and I must have clicked on her blog then, but somehow I only just now, after doing so again 10mos later, noticed how great she is. You should blog more Joe.

If you want to take part in an amazing love story (I feel like a voyeur reading this blog) check out To the Other Side of Dreaming. I took the last of my disaboom blogs off of my blog roll when I added this amazing blog yesterday.

Fourth, Attila recently wrote about her collaborative craft studio, which employes disabled adults and caregivers / relatives. They make Christmas ornaments, that are the most gorgeous I have ever seen, and I think stuff for Easter too. If I wasn't Jewish I'd have ordered a bunch already.

Fifth, here's another great post from Therese. I'm sorry if you don't like dark humor, but I do.

Lastly, here's 2 more great stories from Joe Shapiro and NPR:


Click here for transcript

A separate story that ran earlier that same day, but wouldn't embed is A New Nursing Home Population: The Young

Tuesday, December 21, 2010

PINT


Thanks DeafMom!

Saturday, December 18, 2010

"School is no longer a haven. It's a place of FEAR."

A follow up video


Sounds too close to my experiences, and that fact doesn't make me feel any better, it makes me feel WORSE.

Here is the 1st one.

Wednesday, December 15, 2010

My Blogiversary

I said I wasn't going to commemorate it, but then I saw this picture on a random blog and swiped it. Because it's Wednesday. Although this isn't exactly wordless. I seem to be having an explosion of new public followers in recent weeks, and even my first negative comment, making me feel like I'm finally really making it. So I just wanted to say thanks. Sorry no giveaway like last year.


In case you missed it, here's my first collection of Top 25 Posts

P.S. Is it blogoversary, blogaversary, or blogiversary? I've seen it spelled all three ways...

Tuesday, December 14, 2010

PINT

Monday, December 13, 2010

How to Survive Chronic Depression: Cheryl Style

The theme for this month's disability blog carnival (which will be up on the 21st) is "long nights and what we need to get through them." I thought I'd participate, especially since I've participated in just 1 carnival this calendar year, other then the one I hosted. I used to submit to all of them. So, lets see...

  1. itunes
  2. caffeine
  3. munchy snacks
WAIT! Dave doesn't want to know how to pull an all nighter?

In all seriousness, I've been wanting to put up this list for the last month and a half. I've been depressed most of the last decade, if not longer. The chronic nature of my depressive episodes is why I was for so long misdiagnosed as having unipolar depression. I haven't though been continuously depressed for the last 10 years. I have had some brief breaks here and there, so I'll post my tips, how I got there. If only I would listen to my advice all the time.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
1) Find a good therapist
If for no other reasons then 1. you'll be guaranteed to get out 2hrs a week (travel time counts) and 2. there's 1hr a week where you don't have to pretend to be ok and/or worry about what people will think/say. A good therapist won't tell you to try harder, but will help you figure out how to keep trying. Do you get the difference?
2) Get out at least 1hr/day, preferably during daylight.
There are a lot of hours of my day spent in bed online. This is much easier said than done. Especially if you're on a limited budget. Going places tends to lead to spending $. But I was so proud of myself when I was doing this. It was such a big accomplishment, at the time I think I was radiating with pride. If you're working you're lucky. You're out.
3) Join a PEER RUN support group.
Most people are judgmental about how you got depressed/why you're depressed/ what you need to do/are doing to not be depressed. I've never met someone at OOO who was judgmental of my journey. If they are, they're really good at hiding it. Here, again, is the link to the DBSA.
4) Exercise. How much? What kind? I don't know.
A lot of my friends are obsessive swimmers. I like to run. And ride horses.
5) Spend time with furry creatures. Unless you're allergic.
People are rarely as happy to see me as animals (dogs, cats, ponies) are. When something is that happy to see you, you can't help but be happy too.
6) Shower more then once a week.
I know what you're thinking. If I'm not going anywhere why bother? Because you'll feel less gross. You'll still feel gross, being depressed automatically makes me feel gross, but don't you want to feel less gross? Take one extra 15min shower a week. You'll be amazed. You'll also be more likely to go out. Who wants to smell?
Don't pressure yourself to shower everyday if it's too overwhelming. Just twice a week. I've been there where the thought of both showering AND getting dressed (I could do either or) made me cry.
7) Get someone to do your laundry once a month. More if you don't own a lot of clothes.
Even if you have to pay someone it'll be worth it. Laundry is an overwhelming task, and not doing so will keep you from going out, for fear that your clothes smell. If you don't know a "cleaning lady" to pay, pay a friend. If they say no, they're not really your friend. If they truthfully have OCD and are afraid of germs, they get a free pass.
8) Eat at least twice a day.
Even if you have to order take out from some place like campusfood.com because you're too depressed to go out to buy groceries / take food out / make the food that you have or even get out of bed to go to the other room to get your phone to call in a delivery. Unfortunately, you do have to get out of bed to answer the door when the food arrives. If you don't eat enough you'll start feeling physically ill and that's the last thing you need when you're depressed.
9) Keep on top of your dishes.
Because even if you don't leave all day you can still say you did something.
10) Buy a velour track suit.
This wasn't on the original list, but I went shopping with my BFF 2 weeks ago, telling her that was a necessity. I'm surprised people still wear these. Do they actually, or is it just me? The Juicey craze popped up like a decade ago. I still sleep in my velour pants I got for Chanukah in 2001. They're a MUST if you're depressed, especially in the winter. They're great to curl up in bed in, and if you have to go out you don't have to change to look put together.
I don't know what you do if you're a guy.
PLEASE ADD YOUR IDEAS IN THE COMMENTS. We could all use the extra ideas.

Sunday, December 12, 2010

Baby It's Cold Outside


Back in Nov my therapist implied (over text message) that I have seasonal aspects to my mood. As in I get more depressed when it gets darker. Not something I thought about at all until last fall. Right about the time the clocks changed. Although I don't think you can conclude anything looking just at the last two years (which is what she did) because there was another stimulus that occurred both years that spurred these episodes, that is independent of darkness.

Then Friday the thought popped in my head that it's not so much the darkness for me as it is the temperature change and my sensitivity to it. I've been very depressed this past week, for a variety of reasons, and I realized it got worse when the temperature got below 40 degrees. So there probably is a direct seasonal connection independent of that other stimulus, but not for the typical reason she might be thinking. It's not SAD or any incarnation of it (I don't think).

If my idea of freedom is the wind blowing through my hair, you could basically say, in a sense, mother nature snatches my freedom away each winter. This coming Tuesday it's supposed to be 25 degrees (that's -4c), accuweather says. That's certainly not a day I'm going to the grocery store, not that I was planning on it.

The cold weather takes all the spontaneity out of my life. It calls for too much advance planning, too much relying on paratransit, added frustration, not just from paratransit, but from sidewalks and curb cuts that don't get shoveled and from streets that get plowed into the rare previously shoveled curb cuts. Even when it doesn't snow, I'd rather not be caught outside in any temperature under 50 degrees as cold causes pain. It's a CP thing.

It snowed Friday, for the first time this season. Not enough to stick to the roads, but enough to put a dusting on some bushes. I thought, here we go again... ARGH!!!!! I HATE COLD AND I HATE SNOW!!!!!!!!!! Please pray that my holiday party that is next weekend doesn't get canceled again this year. We can't possibly have a blizzard on the same exact day two years in a row, can we?

Saturday, December 11, 2010

National Call in Day For Complex Rehab Technology February, 16, 2011


Complex Rehab Technology (CRT) products and services include medically necessary, individually configured devices that require evaluation, configuration, fitting, adjustment or programming. They are designed to meet the specific and unique medical, physical, and functional requirements of individuals with complex needs. CRT refers to individually configured manual and power wheelchair systems, adaptive seating and alternative positioning systems and other mobility devices.


We are asking Congress to create a separate CRT benefit category under the Medicare program. This would include the elimination of Medicare's "In the Home" restriction for CRT products. Our objective is to improve access for people of all ages, whether covered by Medicare, Medicaid or private insurance. Click here for additional information.

Call your Members of Congress on February 16th, 2011 and ask them to support legislation to establish a Separate Benefit Category under Medicare for Complex Rehab Technology.

Register today at www.CELAadvocacy.org to receive your National Call-in Day Packet.

Friday, December 10, 2010

Move Over Zach Anner, Geno Rodgers is Here


Found here

Thursday, December 9, 2010

"I'm in Jail. I have committed no crime."

There have been many GREAT Olmstead related stories on NPR lately. Here are two. A third, Families Fight to Care for Disabled Kids at Home, is a month older, and I couldn't get it to embed.


Here is the transcript

Here is the transcript

Here also are two NPR stories that are text only:

Katie Beckett: Patient Turned Home-Care Advocate

Justice Increases Efforts to Enforce Olmstead Ruling

I Joe Shapiro.

Wednesday, December 8, 2010

Christmasy? Or Not?: A "Wordless" Wednesday

Our Gingerbread Village











These first two are pics of the one I did. It's the "chalet" says the box












The whole village

Done Thanksgiving Day with my cousins / brother / his fiance. I was like "But we're Jewish." My mom tends to agree with me, my brother goes "It has nothing to do with Christmas. It's winter. It has more to do with Hanzel and Gretal then Christmas." You think?

Tuesday, December 7, 2010

A Humerous PINT




Quotes complements of Therese of course!

Monday, December 6, 2010

You Have to Practice Being Proud?

I think Jessica's got it down.
I know this went viral several months ago, but it's the first I've seen it.

Sunday, December 5, 2010

Class Action Lawsuit Settlement

Information Alert: Compensation Available for QuickTrip Disability-Based Discrimination Victims

You may be entitled to compensation in a U.S. Department of Justice lawsuit against QuickTrip Corporation for discrimination on the basis of disability in violation of Title III of the Americans with Disabilities Act (ADA). On July 15, 2010, the Department of Justice filed a lawsuit, together with a Consent Decree proposed to settle the lawsuit, in the U.S. District Court for the District of Nebraska. The Consent Decree, approved by the Court on July 19, 2010, established a $1.5 million fund to compensate individuals who experienced discrimination in violation of Title III at QuikTrip gas stations, convenience stores, truck stops, and travel centers. Title III of the ADA prohibits private entities, including, among others, the owners and operators of gas stations, convenience stores, truck stops, and travel centers, from discriminating against individuals with disabilities in the provision of goods, services, facilities, privileges, advantages, and accommodations.

It is important that you know about the existence of this fund, and how to make a claim if you have experienced disability-based discrimination. The time period for filing a claim, as established by the Consent Decree, is approximately 180 days from July 19, 2010. However, claimants should act quickly. The determination of payment eligibility and the amount of any payment will be made by the U.S. Department of Justice after all claims have been received. To be determined eligible for payment, a claim must involve disability-based discrimination that is prohibited by Title III of the ADA.

A fact sheet on the lawsuit and Consent Decree, a press release, and information on how to file a claim for payment from the fund can be found at


Please feel free to distribute this information widely.

Saturday, December 4, 2010

The Maccabeats

My annual fun Chanukah video

Friday, December 3, 2010

On the Subject of Buying Groceries

Visit msnbc.com for breaking news, world news, and news about the economy

I found this when I was looking for info on food deserts. Frozen food is a lot of what I eat, I bet a lot of what other people eat. Thought it'd be useful to post.

Thursday, December 2, 2010

US HHS Office Conference Call TOMORROW

In order to help keep disability advocates more informed, the U.S. HHS Office on Disability will, starting in December, host monthly calls to update you on various disability issues as well as to introduce you to persons who work on disability issues in the federal government.


We strongly urge and ask that you distribute this email broadly so that anyone who wants to participate can do so.

Our first call will be this Friday, December 3, at 11:00 AM Eastern. The conference call information is below.

Dial in: (800) 230-1092

Title: Disability Call (use instead of code)

Date of Call: 12/03/10

Start Time: 11:00 AM Eastern

For live captioning, at time of call, log onto:http://www.fedrcc.us//Enter.aspx?EventID=1663465&CustomerID=321

Again, please distribute widely.

Wednesday, December 1, 2010

Because I Just Don't Have the Words

Our Fallen Brothers and Sister

Laura Hershey
August 11, 1962-November 26, 2010
Age 48

Paul Miller
May 4, 1961-October 19, 2010
Age 49

Shel Trapp
?? 1935-October 18, 2010
Age 75

Paul Longmore
July 10, 1946-August 9, 2010
Age 64

John Callahan
Feburary 5, 1951-July 24, 2010
Age 59

James Sullivan
June 21, 1961-February 17, 2010
Age 48

For more info, visit The Advocates Honor Roll and Media Dis&Dat (to find info the easiest type the person's name into the search bar at the very top left)

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