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! 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--
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
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


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


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 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 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 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:

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)

Tuesday, November 30, 2010

True Story Tuesday: Telling the Passage of Time

Click on the picture to see the others

My brother is getting married on April 3rd. They weren't dating long when they got engaged. Only 10 months, and it's been a bit over 3 months since then. This doesn't matter to the story at all other then to mention that they live in Los Angeles and Thanksgiving was in New Jersey, and being that it's only been 13 months and it's not like they live around the corner, she had never been to my aunt's house. So she didn't know that my aunt is never without a camera and that there could easily be 1,000 family photographs in that house. She doesn't take photos of things, only people, mostly family. I'm family of course, so there are a fair amount of snapshots of me around. And my brother.

So, very soon after we walked in the house my cousin said "Go look at that roll of photos over there. There are pictures of [my brother] when he was little in there." There could be 100 pictures right there just to flip through, at least 50, all at least a decade old, many older, mostly of just my cousins, but many of other family. The best choice if you want to see young pictures of us. Being that they don't live around the corner from my mother either, I doubt she's ever seen young pictures of my brother.

It wasn't long before he was looking at one trying to figure out how old he was. He was doing ok, but he doesn't have the brain for this kind of stuff. It's not his speciality, so I jumped up. "I was 9, you were 11, so and so was... I can tell by my eye glasses." I always had interesting eye glasses growing up (you all should see my mother's) and kids don't keep them long. They grow out of them.

On to the next picture. There are 20 people in this picture, I counted later. Missing are my grandparents and my Grandma's brothers and their wives. It was just the offspring and 2 of the offspring's offspring. No one else's kids had had kids at this point. I was on the couch, the back row, my head barely visible, as I was slouched over, as CPs often are. I wish I could get this picture to post it here, but I doubt if the other 19 people want to be on the internet. There were a few rows of people in front of the couch in a room not big enough for the 28 people that were probably in there, so unless you really, really looked you can't tell what I'm wearing. You certainly can't tell that I'm wearing overalls. You can't see the front of me, it's a very crowded picture and I'm blocked.

But what you can see is a little bit of my right leg. I must have had to keep it sticking out. Elevated? I don't know, this was quite awhile after the surgery. "I was 10. You were 13," I said matter of factly. "Those are the overalls I had when I had my leg in a cast." I said this in such a tone as if to say don't you dare tell me that wasn't when this was taken, because I know that's when it was.

I know because I had 5 pairs of overalls that my mom got me that fall to go over my cast from my second surgery (only 1 leg that time thank g-d). Overalls have wide enough legs to get over a cast, not everything does, pants are hard to find, and overalls were thankfully very much in style in 1995. These were olive green khaki, not plain jean that I have had at other points in my life.

Next picture, me, my brother, our 3 cousins, ages 8, 6, & 4, alone on the couch, same annual extended family Chanukah party. I am indeed wearing olive green khaki overalls. The right leg is pulled up revealing a very ugly cast. It was off white. I woke up from the surgery with it, the surgeon having not asked what color I wanted beforehand. I was pissed. I don't know why I requested my cast show in the picture, but I'm sure I wanted it that way, that I requested it.

A good way to tell time, by a cast on my leg. The way I often tell time. I've had 6 surgeries. And a lot of stories. See last week's True Story Tuesday. Not the way way most people tell time, I am sure. But this is my life, and this is how I tell time.

Monday, November 29, 2010

Have You Been to Jail For Justice?

Thanks for posting Cilla! Anyone want to transcribe for any hearing impaired activists out there?

Sunday, November 28, 2010

You Get Proud by Practicing

by Laura Hershey

If you are not proud
For who you are, for what you say, for how you look;
If every time you stop
To think of yourself, you do not see yourself glowing
With golden light; do not, therefore, give up on yourself.
You can get proud.

You do not need
A better body, a purer spirit, or a Ph.D.
To be proud.
You do not need
A lot of money, a handsome boyfriend, or a nice car.
You do not need
To be able to walk, or see, or hear,
Or use big, complicated words,
Or do any of those things that you just can’t do
To be proud. A caseworker
Cannot make you proud,
Or a doctor.
You only need more practice.
You get proud by practicing.

There are many many ways to get proud.
You can try riding a horse, or skiing on one leg,
Or playing guitar,
And do well or not so well,
And be glad you tried
Either way.
You can show
Something you’ve made
To someone you respect
And be happy with it no matter
What they say.
You can say
What you think, though you know
Other people do not think the same way, and you can
keep saying it, even if they tell you
You are crazy.

You can add your voice
All night to the voices
Of a hundred and fifty others
In a circle
Around a jailhouse
Where your brothers and sisters are being held
For blocking buses with no lifts,
Or you can be one of the ones
Inside the jailhouse,
Knowing of the circle outside.
You can speak your love
To a friend
Without fear.
You can find someone who will listen to you
Without judging you or doubting you or being
Afraid of you
And let you hear yourself perhaps
For the very first time.
These are all ways
Of getting proud.
None of them
Are easy, but all of them
Are possible. You can do all of these things,
Or just one of them again and again.
You get proud
By practicing.

Power makes you proud, and power
Comes in many fine forms
Supple and rich as butterfly wings.
It is music
when you practice opening your mouth
And liking what you hear
Because it is the sound of your own
True voice.

It is sunlight
When you practice seeing
Strength and beauty in everyone,
Including yourself.
It is dance
when you practice knowing
That what you do
And the way you do it
Is the right way for you
And cannot be called wrong.
All these hold
More power than weapons or money
Or lies.
All these practices bring power, and power
Makes you proud.
You get proud
By practicing.

Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.
Just practice,
Practice until you get proud, and once you are proud,
Keep practicing so you won’t forget.
You get proud
By practicing.

Saturday, November 27, 2010

On Privlige Again

A few weeks back I had a micro-freak out. Nothing mentionable really, less then 5 minutes in my head, no where anywhere near having a panic attack. I needed groceries. In September a new store opened up about 2mi away, so the closer one, maybe 1mi away, a different chain that sells overpriced food of no better quality, closed in October. Forget about the fact that I have a Trader Joe's 3 blocks away and a 7-11 (for emergency milk & dish washer detergent) literally across the street. I waited all day, until it was dark and cold, to roll to the new grocery store.

It was after this that the almost imperceptible freak out occurred. What am I going to do when it snows? How am I going to get food this winter? People / the county just don't shovel sidewalks very well and it's too far to roll in the street. At least you could get to the old grocery store by cutting through the mall and you'd barely be outside at all. It's too cold for me to be outside that long in the winter. Cold hurts. Even in the daylight, in a few weeks it will be too cold. It's 20-25min each way. I don't want to take paratransit somewhere I could roll (absent snow). I don't want to pay a cab to get somewhere I could roll. What a waste of money and time and aggravation.

Then I stopped myself. I thought about all the grocery stores that I can roll to in 20-25min or less, including Trader Joe's (4). Of course I can't roll there in the snow, but I can take the bus (if the bus stop is cleared). Bus stops often aren't cleared in the county or the city. The bus stop right outside of my building is always cleared though. I can even take the bus easily to a 5th grocery store. Not just the bus, the QuickBus. I have a decent feeling that stop will be cleared, although I bet the curb cut to get to it will be dicey.

I can take paratransit even though it frustrates me. I can afford a cab. I can ask friends with cars to take me when they go, even though I don't want to. Two of the grocery stores deliver. I can order food online and it will show up at my door. I can afford the delivery charge, which I think is free for your first order. I won't starve. Why I momentarily though I would is ridiculous.

So then I thought about how lucky I am. Many people don't have that many grocery stores that close to where they live. Have you ever heard of food deserts? I'm not even talking about 3rd world countries -- just go into Baltimore city. The city hired a "food czar" to try to rectify that problem. We also have a problem with "hack cabs" something I'd never heard of until I googled Baltimore food desert. I'm lucky to have so many transportation options that are easy for me to access, even if paratransit is frustrating. It's not difficult for me to get food, and for that I am thankful.

Wednesday, November 24, 2010

Towson University DSS, WTF?!?!?!

This video was posted on youtube on Monday. I found it on my Facebook newsfeed last night. Thanks Paula D-W. Here's an article about it. This situation sadly doesn't have me all that surprised. I haven't ever dealt with the Dean of Education, as I wasn't ever an education major of any sort. However, I have dealt with several high up Towson University officials and 3 different people in Disability "Support" Services (DSS). (yes that is me on the cover of their brochure, and I wish I wasn't anymore). My baggage from this post (#12) is strictly from someone I will not name whom I doubt this student has come into contact with. They strictly divide caseloads up by diagnosis over there.

But, I do know the head of DSS quite well, and I am sure they have come in contact with each other at this point. I am wondering WHAT THE HELL ARE YOU DOING?!?!?! Or I should say NOT DOING. Again DSS is not supporting a student, as their name implies wrongly that they do, but are probably aiding in using this student's diagnosis against her, as was done to me over a year and a half by the person referred to in the post I linked to, not the director. If they are not doing that (MIRACLE) or even if they are, they are most likely standing idly by and not advocating for the rights of this student and the children with which she worked, saying it is not their problem, or just trying to make her go away because it's easier not to deal with her. Telling her to just come back another semester, not realizing the damage that does, dismissing someone.

Of course I am projecting my 3 years of negative experiences onto a situation I know very little about, but I don't see where it would hurt to email DSS to try to light a fire under their ass. They should be working to rectify this and it just sounds from the video like they are not (again, not surprisingly). So, their contact info is here.

Tuesday, November 23, 2010

True Story Tuesday: Smell Like a Turkey Sandwich

Click on the picture to see the others

I'm a fan of the show Private Practice, and for those of you who don't watch, the character Charlotte has had her arm in a cast the past 3 weeks after a beating during a brutal rape. Seeing her in the cast has had me thinking of turkey sandwiches, so I thought this would be a good story / tips to share during Thanksgiving week.

When I was 17 I had 2 surgeries over one summer so that I only had one foot in a cast at a time, instead of both at once like in the picture, right. They were the only times I've ever had summer surgeries, so we weren't really thinking when we decided it was a good idea to go to see fireworks on the 4th of July in 90+ degree weather with my leg in a below the knee cast. You sweat a lot in 90+ degree heat even when you're not in a fiberglass cast. Mix that heat with the heaviness of a fiberglass cast which has been on you for about 2.5 weeks or so, and dead, gross, nasty, sweaty, ITCHY skin ensues. And it doesn't go away.

I would not recommend spending anytime outside in a cast in the summer. It was itching so bad all that night and the next day that I was crying because it WOULDN'T STOP. My mom called the hospital and said she just didn't know what to do with me, she felt so bad. She talked to my surgeon's assistant, who is a nurse and an absolute genius. He said #1 to give me lots of benedryl, which I am very sensitive to so I passed out for the rest of the day. #2 he said to get an ice pack and put it on my thigh of that leg. I wouldn't recommend using ice in a baggy, as when it melts the water could leak and drip down into your cast. Use one of those fake ice blocks.

[Love my non-scanner, taking a picture of a picture with my phone skills? This is a very unflattering picture of me after my most major surgery, done at Gillette when I was 13. Bad picture, but the easiest to find.]

Your brain can't process both stimuli at once, it gets overloaded, and so you both stop being itchy, and your thigh doesn't feel cold. I would keep thinking that the ice block needed to be replaced, that it had thawed, would put my hand on it to take it off, only to find that it was still plenty cold. IT WORKED SO WELL, I had ice on one leg or the other for the next 3 months.

What does that have to do with a turkey sandwich you ask? Nothing. That's cast tip #1. Cast tip #2 is that I went back to Minnesota to have that cast taken off and have the next surgery done. After getting the cast taken off, I was waiting to see the doctor, vigorously finally scratching at my leg [FREEDOM!] and all it's nasty flaky skin, when the surgeon's assistant came out to get me. Me with the nice pile of dead skin on my wheelchair footrest. I was scratching so much so hard that I was giving myself a rash.

What did he say to do? He said to go out and buy a small jar of Miracle Whip (he said this only works with Miracle Whip, and I have no comparison experience with which to dispute) and slather it on my leg and leave it there for a bit. Wipe it off and presto, all the dead skin comes off with it. Who came up with this? I have no idea. But IT WORKED, so much better then the soaking I used to do after my other surgeries. Worth smelling like a turkey sandwich for a day.

Sunday, November 21, 2010

On Facebook & Dogs

I read an article yesterday about a guy who was having asthma attacks brought on by Facebook. Think what you will. The comments to that article are interesting. Facebook is making me depressed. Well it is not making me depressed, but it sure isn't helping the depression I am already in.

There are two reasons for this. The first is everyone whose names are changing. I'm 25. It's developmentally appropriate to be getting married. I have been to two weddings of peers a few years ago. I however have yet to have my first kiss. Forget about marriage. I have no desire to be married until I am 40. I'll move at my own pace. While on many levels I am quite fine with this, seeing people's names changing left and right (I don't care if I haven't actually spoken to them in a decade) is making me feel inadequate.

The second reason is this thing they've got going on the "remember this?" pictures or "look at your friends' pictures" or whatever facebook is actually calling it, where pictures pop up on the side of the screen that may be from as far back as 2006. If that seems like a long time ago I was an early facebook adopter from way back when a university email address was required to join.

Most of the pictures that are popping up are from/of friends that I am no longer friends with. That I have not talked to in 13mos. They're from good times mostly, although, as I now have to constantly remind myself, about 2/3 of the length of our friendship wasn't all that good. Every few months I do check their profiles and I do think of them from time to time, but it's the pictures of my friend's dog [not the dog in this post] that are really getting to me. I LOVED that dog, and he loved me. It's a good thing I lost all of my friends' phone numbers when I lost my last phone in a snow pile during snomagedden, I might just text someone for an Oreo visit. Which would be the wrong thing to do, to use someone just for their dog, as my therapist felt the need to remind me over an email yesterday.

So now facebook has got me thinking about dogs again, like Lexi over here to the left who I found on this afternoon. She reminds me a lot of Oreo. The look of her. I shouldn't have been looking at dogs for adoption, this is making me more depressed. I can't have a dog. I can't afford a dog. I don't know the first thing about taking care of a dog. But a dog would benefit my recovery SO MUCH. Mom, you know it's true. Lexi, fortunately for both her and me, over the course of just a few hours, is no longer up for adoption. When I went to petfinder a few hours later I got a "the pet you are trying to find is no longer listed" message. So I should get the idea of her out of my head. But I can't. I wasn't going to adopt her anyway, realistically.

I am going with 2 friends Tuesday to a local animal shelter in the hope that pretending I'm looking for a dog and spending time with dogs will make my urge to actually have a dog, own a dog, lesson, and not make it worse. Cross your fingers for me. Please. If it gets worse I don't know what I'll do. I fantasize about having a job and what I'll be able to spend my money on. These things aren't luxuries, just alternative ways to aid in my recovery. To be able to have personal trainer and a massage therapist again. Some acupuncture sessions. A way to get to horseback riding lessons. For some reason a dog wasn't on this list.

A dog needs to be on this list. Although I don't know how my mom will feel about still having to pay my rent while I'm paying vet bills. I fantasize about working part time for a non-profit. I may never be self-supporting, although I know plenty of people who do just fine on public benefits alone. I shouldn't knock it.

My one major question though, the thing I can't see a way around, is how to get my dog to the vet. I'm sure there are plenty of people in this world with pets that don't have cars. How do they get them to the vet? You're not allowed to take pets on the bus, paratransit, in cabs, only service animals and I'm not looking at getting a service dog, I'm looking at an emotional support animal. Do I have to get a vest and masquerade my dog as a service dog in order to get to the vet? That doesn't seem right...

Saturday, November 20, 2010

We're All Just Trying to Survive

Is it the economy or the nature of the disability or just the type of person who would opt to go to a support group? Or a little of all the above? Why is it that everyone I associate with (myself included) is struggling so much? Where are the successful people with psychiatric diagnoses? The Andy Imparatos of this world? They're not coming to my support group.

Of course I shouldn't put Andy on a pedestal, my best friend reminds me that people are people and you shouldn't ever put anyone on a pedestal. It's not Andy per se, but rather the idea of Andy. The doctor, lawyer, teacher, who is still a doctor, lawyer, teacher, not someone who used to be and is now on SSDI. People who are not working 2 jobs to afford their medications. Does that even exist in this world? In this country? Maybe in England? I don't know a thing about the NHS.

We're all surviving in the system and that's an accomplishment. Don't get me wrong, that's a HUGE accomplishment. We've only had 1 fatality, a death "from depression" as my best friend puts it. Survival is HARD, tough, a LONG road worth fighting for. But I wonder if in all this surviving we've forgotten that what we really should be doing is fighting not just to survive, but to THRIVE. We CAN thrive. It is possible. There is more then 1 Andy Imparato, Kay Jamison in this world.

The question that I wonder is if anyone really is thriving at all in this economy, psyc disability or not? Is everyone just surviving? I think that's it. The world just sucks right now is all. Although those of us attending support groups, whatever they are for, are always going to be having a bit of a harder time at life, then those who have other types of support systems. It's just the way things are. But just because I don't always see people who are THRIVING doesn't mean they're not there, that it's not possible. That's an important thing to remember.

Friday, November 19, 2010

Give Your WRAP to Your Shrink

We're in the middle of another 8 week WRAP session. Different volunteer facilitator, different set up, larger group, so I wanted to do it again. We keep getting good ones. Last night she gave us an assignment to come next time with the name of someone we plan to give our WRAP to. I really like that she did that. It's easy to conceptualize that WRAP is something that you do for yourself and yourself alone. But it isn't. WRAP is a working document that is meant to be shared. Especially the crisis / post - crisis plan part. Like mine has the name of the person designated to do my laundry. Generally these people should know these things...

Some people had these blank looks on their faces, so I piped in and said "I have a WRAP I did previously and the first thing I did after I wrote it was make a copy of it and give it to my therapist." I think I saw some wheels turning. Apparently this isn't as obvious of a thing to do as I thought it was.

I don't take notes during WRAP like most people do. I'm more of an auditory learner. Writing would be too distracting. Nor did I work on it in between or have I read any of the now 3 copies of the red book that I have (I may have given 1 to my shrink, can't remember). The way it worked out for me last time was that I was having a bad day, I think it was 6 weeks into the last WRAP session, I can't remember what was going on that day, but I do remember that I wanted to do anything to keep myself from going home and crawling into bed, so I sat outside the library at school (it was a nice day in April or May) and wrote it out in 1 sitting. Then I immediately went in the library and made a few copies, went to the student union and bought a big envelope, took it over to the school post office and mailed 2 copies, 1 for my shrink and 1 for my pdoc. While she would have copied it for free in her office, for whatever reason I wasn't going to see her for a week and a half or something (I wonder how close I did this to the spring action, can't remember) and I thought it was best for her to have read it in advance of our next appt, especially since it was so far away. Then I let both of them know to expect mail, as I unfortunately didn't have the option to scan / email it.

We had a really good session that week, talking about 'when things are breaking down,' 'early warning signs' stuff. Things that I thought she picked up on back when I started seeing her in 2007, but that apparently she missed. Like the fact that when I feel really bad I tend to dress up, put on make up. Because the last thing you want when you feel like crap is for people to ask you if you're OK. If you look good and people give you compliments you have the option of just saying "Thanks," or saying "Thanks. I feel like crap," depending on who it is. If you look like crap and say "I'm fine," they know you're lying. This isn't a conversation we would have had if I hadn't mailed my WRAP, and it was a conversation we needed to have.

Why wouldn't you share your WRAP with your shrink? One of the main components of WRAP is the concept of having 5 supporters. Why wouldn't your shrink be one of your supporters? They're not going to come over and do your laundry, but if your shrink can't help support you with the other stuff, you need a new shrink.

Wednesday, November 17, 2010

2nd ADAPT Wordless Wednesday

I have nothing of note to write about today and realized I've only posted pics from half of the action. To see the first half, click here

On Tuesday, at HUD we taped the signs so that the people who locked themselves inside could read them


Spitfire always has a sign like this on her chair. It says "Nursing Homes = Hitler's Final Solution" and has some swastikas


Someone used chalk to draw the wheelie dude inside of jail on the sidewalk outside of HUD "HELP ME"

Banner says "DEFENDING OUR FREEDOM" I'm all the way over on the end in the baseball cap. Did I post this before?

Can you tell that's me chuggin on the water bottle? It was HOT outside of DOL that Wednesday!!!

We went to DOL just to use their deck so we could scream at Nancy Pelosi who was getting an award in this building across the street. Thanks DOL!

Last but not least, here I am dancin Wednesday night

Pics from Julie, ADAPT, CDR

Tuesday, November 16, 2010

Another PINT Quote

Found on someone's facebook profile. I wish I could embody that always, but it's hard.

Every once in awhile I miss them, and yet mostly I don't...

Monday, November 15, 2010

JFAAN Organizing Call TOMORROW!

JFAAN Organizer's Forum: Reaching Out to Newly Elected Officials
Tuesday, November 16, 1:00-2:00 pm Eastern Time (10:00-11:00 Pacific)

  • Mike Oxford, Executive Director of Topeka Independent Living Resource Center, Co-Founder of Kansas ADAPT, National ADAPT Organizer: Mike has been an active member and organizer in the disability rights movement for the past 25 years. He served on the Board of the National Council on Independent Living (NCIL) for nine years; he is the immediate past president of NCIL. Mike served on the Board of the Disability Rights Center (DRC) of Kansas, the state's Protection and Advocacy organization, and is the Board President of the Atlantis Community in Denver, CO. Mike also served on the Kansas Association of Centers of Independent Living (KACIL) Board of Directors and the Statewide Independent Living Counsel of Kansas (SILCK). Mike is involved in national efforts to promote choice, independence and freedom for people with disabilities through his work with the University of California/San Francisco Personal Assistance Services (PAS) project and by helping to draft language for national personal supports legislation such as the Community Choice Act, formally known as MiCASSA, and the CLASS Act. Recently Mike became involved with the University of Montana Nursing Home Emancipation grant. Mike writes and presents all around the country, offering technical assistance for consumers who are organizing, state agencies that are seeking to support people with disabilities in the community, and community partners who are finding new ways to promote choice, independence and freedom for all people.
  • Heidi Siegfried, Esq., Health Policy Director, Center for Independence of the Disabled, New York: Heidi is Project Director of New Yorkers for Accessible Health Coverage; a coalition of organizations serving people with serious illnesses and disabilities and a project of CIDNY. She has served as NYFAHC’s project director for two years monitoring and analyzing trends in federal, state, and city health policy affecting access to care and coverage; writing and presenting testimony, bill memos, and action alerts; and organizing and leading monthly roundtables. She has twenty years of experience in policy analysis, lobbying, and advocacy on behalf of women, children, older adults, and people with disabilities on a wide variety of issues such as: hunger and poverty, rural transportation, work programs, privacy, civil liberties, housing and homelessness, and access to health care. She is a graduate of the State University College of New York at Oneonta and has a Master of Social Work from University of Nebraska and a Juris Doctorate from SUNY at Buffalo School of Law.
Questions to be addressed include:
  • How do we establish relationships with newly elected officials?
  • How can we bring in community members with disabilities to meetings with elected officials?
  • How can we use the process of educating new elected officials to organize more people with disabilities?
Call in number: 712-432-0080 code: 193134#.

CART: The call will have real-time captioning (CART)! The website for where you will be able to view the captioning is: . Thank you to the Center for Disability Rights,Inc. of Rochester, NY for sponsoring the captioning of this call.


The Justice For All Action Network (JFAAN) Organizing Workgroup hosts these calls the third Tuesday of every month as a resource for disability organizers, in an effort toward building the organizing capacity of the disability community across the country. They generally follow the format of a Welcome followed by 2-3 experts in a given area speaking for 10-20 minutes on their experiences, advice and challenges. The calls conclude with a 20-30 minute question and answer period.

To ask questions via CART: Sign-in to the Chat function on the right side of the transcript and type your question. One of the call facilitators will read out any questions posted there.

Because we want to maximize the generously donated CART services, we will be beginning the call promptly at 1pm and ending the call promptly at 2pm (Eastern). A few other reminders about call etiquette:
  • Say your name before each time you speak
  • Speak one at a time
  • Speak slowly and as clearly as possible
So you can mark your calendars now, Organizer’s Forums are held on the 3rd Tuesday of every month.

Saturday, November 13, 2010

Survey to Gather Information on Individuals with Disabilities Who Have Ever Been Sexually Abused in School

I used to follow my facebook news feed soooo closely and then I stopped. Randomly looked at it the other day. There are so many things I miss by not looking at that news feed... like this...

My name is Mary Lou Bensy, and I am a Doctoral Student and researcher at Hofstra University, located in New York. As part of my Doctoral Dissertation, this ground-breaking research and survey is being conducted to help us learn more about the sexual harassment and abuse of special education students in schools. We need this vital information to help protect this victimized population. The survey is designed primarily to gather information on individuals with disabilities who have ever been sexually abused in school.

Parents, guardians, advocates and caregivers of students with disabilities are asked to respond on behalf of ONE victimized student per survey. If an individual chooses to respond on behalf of more than one student, he/she can feel free to take the survey more than once. Adult survivors are asked to complete the survey for themselves.

At the beginning of the survey, you will be asked to answer questions about the student on whose behalf you are completing the survey. Then there will be questions about different kinds of sexual harassment and abuse that may have occurred. If you responded 'yes' to one of those types of abuse, you will automatically be asked to answer additional questions about that particular abusive experience. This survey is anonymous, so no one will know who the survey taker is. I do not ask for your name or contact information, or that of the victim, on this survey. When I report my research results, it will be done with no identifiable information from individual participants.

I know that many of these questions may be painful to answer, but please be as honest as you can in answering them. Please be sure to mark all responses that apply for each question. You can skip most questions that you do not want to answer. Your patience in completing this survey is very much appreciated.

Please understand that this research is not designed to provide therapeutic intervention or follow-up for the responder or the victim. If you feel the need for professional assistance on behalf of yourself or the victim, there is a link, at the end of the survey, to a list of resources available to you. To protect your anonymity, and that of the victim, please do not make an effort to reach me by phone or email.

Friday, November 12, 2010


It's the BEST combination!!!!!

I was looking at an article on the Baltimore Sun website and they have this little video player thing on the side, as do apparently all newspapers run by this media group, as I saw a similar looking video player on an Ohio blogger's blog. Anyhoo, I guess they have many of the same videos on every site??? This place isn't even in Maryland. But whatev! Things like this are always a double edged sword for me as they make me both happy and forlorn.

Thursday, November 11, 2010

A Roundup

First, Some blogs

Big Noise was briefly on my blogroll, but Cilla was never posting. Apparently she got inspired by Mike. Keep a look out. She may be back on soon if she keeps this up.

Through Networked Blogs on Facebook (here is Uppity Crip's page) I found Sasha is a Monster. Looks interesting. She's Jewish, in her 20s and has BP II. Remind you a little of anyone?

I also somehow recently came across Love on Wheelz. Google Love on Wheels and you come up with other stuff. The title of the latest post is offensive, but the writing is good.

I also recently rediscovered Deeply Problematic, good if you ever want to read blog posts that make you think. If you like thinking about the intersection of feminsm and disability that is.

Next, A Blog Post

Of course it's by Therese:

Alas, I came to the end of the day with some successes, and I realized that it's definitely not the noteworthy achievements that should be celebrated if you are, like me, impaired by bad brain chemistry. It's the days where you choose over and over again to get well, even though the other side is beckoning you to sleep in, eat pizza and ice cream, skip the exercise, and blow off work.
Then, Some Articles

A few weeks ago Emma posted that she had an article (a really good one) published in Disability Now. Read People Say the Strangest Things. I also found other great articles on DN:

As someone who uses a wheelchair and is interested in human services, I was really interested in Facing out the Elephant. Other good Mental Health related articles are Questions of Balance: Work and Mental Health and Trisha Talking the Talk, both of which have made PINT apperiances on this blog.

I can't finish with DN without mentioning their article about the current goings on of DAN, ADAPT's counterpart in England. Read Direct Action! Life on the Streets. I find DN so much better and to have so much more of a wealth of stories then New Mobility, the closest US counterpart I can think of. Oh, yes, DN has work by Americans too. There's Coming to Terms by NYLN's Betsy Valnes.

Lastly, an article in Monday's Baltimore Sun State Health Chief Pledges to Safeguard Public Mental Health Dollars


Wednesday, November 10, 2010

Lawyer Takes on Psychiatric Industry For Over-Prescribing to Foster Children

Speaking of Zyprexa... I have a friend, who took it as an adult, who had a MASSIVE heart attack and has serious diabetes from taking that. Which is why I am seriously cautious about anything that's been out for less then 5 years...

Also, Monday I spent way too much time online and stumbled across some articles on childhood bipolar. When is childhood bipolar no longer childhood bipolar and is just bipolar? Anyone know? Because I really wish I was diagnosed at 15 and not 22 (lot of years in between there), not that it matters what it's called though... *end tangent*

from Are More Kids Bipolar? That article links to articles from the New York Times and Slate, all good reads.

Tuesday, November 9, 2010

Glad I Don't Swing So Far

Therese writes at Beyond Blue

Monday, November 8, 2010

I am Not a Binge Eater

This was not the post I was planning to write for today, maybe Thursday... I hope that this post doesn't make anyone feel bad or make it seem like I feel superior, because I don't. I was just struck by how matter of fact, how black and white the following thought came into my head 2hrs ago.

I am not a binge eater.
I was heading into the kitchen earlier for my second left over halloween cookie of the day. If you buy a box of halloween cookies [which look nothing like the one on the left] on Nov 2nd, they're cheap, and I was craving cookies. I felt slightly guilty buying them, but I bought 3 bagged salads too. I felt guilty eating a second one today too, until, as the sugary goodness touched my tounge I simoutaneously realized that I have had the box for a week and that this is only my 6th cookie. They're going to go bad before I finish them. And so, I thought
I am not a binge eater.
Just like that. I do eat a lot of processed convenience crap. I put fish sticks in the toaster oven for lunch today. But that is the topic of another post. Or not.

I know quite a lot of people who binge eat, and I have spent the last 2hrs thinking about how hard life must be for them. To them eating is a matter of exhausting almost insurmountable wills. I know someone who had the willpower not to buy the crap I eat and then binged on carrots and peaches. It's not about willpower at all. If it were about willpower and fight these people I am thinking of would not still be dealing with this. They fight.

So I ponder something with no answer. Why are some people binge eaters and others not? Why do some people have multiple psychiatric disabilities and others none? Why does one person jump off a diving board and win a gold medal and another breaks her neck?

What I'm saying is that life isn't any harder for the binge eater then it is for anyone else, it's just that person's particular brand of hard. It isn't fair, is all, that life has to be this hard for anyone. Eating is supposed to be so simple, but yet for many it is not. And I feel for these people I know. I feel for them because I cannot do anything to help them really. I wonder though why I don't feel like this for the people I know who hear voices that aren't there or for people I know who have non-psychological disabilities. Maybe because there are cookies and a giant thing of peanut butter (that I've had for 9 mos) sitting on my kitchen counter that I see all the time? I don't come in contact with voices.

This came on all of a sudden. I don't know why I thought of the cookies, and oh yeah, of the ice cream that sometimes gets freezer burned. Any thoughts anyone? About how life's not fair? The more I've been thinking about binge eating the more I've been thinking about other things that aren't fair. Like nursing homes. And I don't want to go there today.

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