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!

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.

Sunday, November 7, 2010

Cory Silverberg's 2nd Video--SEX POSITIONS

Check out Cory has GREAT stuff. Or, I suggest also, buy his book. No, I am not on comission, I just found it that helpful.

Friday, November 5, 2010

How to Survive Therapy: Tips 9-16 Cheryl Style

9) If you're in the kind of therapeutic relationship where the therapist generally runs the show, decides what to talk about, and you just go along with it, BUT one week you have something you need to say that you're sure won't be on the agenda...

Call / text / email them, whatever their preferred method, enough in advance that you're SURE they saw it, and simply say "I have something specific I want to talk about this week." They'll be so curious about what it is, and so shocked at your unusual behavior that they'll ask you what it is first thing and you'll have plenty of time to talk.
10) Use students with CAUTION.
They're cheaper (or sometimes free) but the quality you get is iffy. The first student I saw was clueless. The second was GREAT! [Not to say that this hasn't happened to me with licensed professionals also] The other thing you have to consider is that you'll end up having to get a new therapist every year or every other year. Are you OK with explaining your history over and over?
11) If a therapist thinks that antagonizing you / pushing your buttons is good therapeutic motivation, chew that one over.
Maybe it is, but maybe they're reinforcing negative behaviors you'd like to curb.
12) If a therapist utters the words "people like you," or "those people," repeatedly, or even just once, FIND ANOTHER THERAPIST!
Back to the putting people in boxes thing, but HOW ABLEIST!!!! ICK! And PATRONIZING! I'm not a diagnosis, I'M A PERSON! G-d damn it! There is no person like me! Treat me! Help me! NOT my diagnosis! Can you tell I have baggage???

If your reading this blog chances are you have some grasp of the medical, social, charity models of disability. Way to medicalize! Not everyone knows disability theory of course, but some people just innately know NOT to medicalize people. FIND THEM!
13) Take your medication. Or don't. But then try yoga or something...
My point in this is not to be all, bow down to big pharma. The idea of being forcibly medicated sends chills down my spine. My point is that you need something to put you / keep you in balance, be it a mood stabilizer or an acupuncturist. Therapy works best in conjunction with things. Someone I know swears by his chiropractor, another by transcendental meditation, and another swims 10hrs / week. Do it with pills or without. Whatever floats your boat.

Feel like your treatment team is being too forceful, intentionally giving you a one sided picture of things, (especially of DANGEROUS things like ECT), or is even just the tinyist bit vague? Antagonize them. One pdoc suggested maybe I try a medication that, after searching the interwebs, I discovered has a possible side affect of muscle spasm with pain. I thought I was the crazy one. He's crazy for even considering this medication for someone with a diagnosis of spastic CP.
In addition to the yoga, time with furry creatures (a favorite of mine), or whatnot.

Who has the money to go to 6hrs of therapy a week? What therapist wants to see you everyday of the week? Unfortunately, they won't let you stay past an hr. Sometimes you need more then an hour in one sitting. Try searching for a DBSA affiliated group. My group is open 2.5hrs twice a week for unstructured time, followed by a 90min support group both days AND is open a 3rd day for a 2hr WRAP session. It'll get you through hopefully... My therapist might be more grateful then I am...

Don't be nervous to find out that there aren't any licensed professionals present at a peer run support group. "They're" not as crazy as you think, and can share more honest stories then a professional can. Plus, peers don't tend to medicalize.
15) If your therapist can't coordinate with your other treating professionals, DITCH THEM!
I'm not even talking about keeping in touch with my botox doc aka pain doc aka physiatrist (the technical term) because that is so complicated (Um, NOT! See #2). Let's start with the most basic and work up to that one. I once had a therapist and a pdoc who had never heard of each other, nor made any attempt to contact each other. Now if that isn't essential, I don't know what is...
16) Lastly, if you happen to find someone who is email savvy, is actually interested in what you have to say, DOESN'T medicalize or make you want to punch a wall, will willingly coordinate with other treating professionals, AND is open to your ideas for alternative treatments, HOLD ONTO THEM. They're a rare breed...

Thursday, November 4, 2010

I heart Cory Silverberg (ever thought about adapting vibrators? Cory does...)

FYI Cory Silverberg is a certified sex educator, part owner of Come As You Are sex shop in Toronto, Canada, the sexuality guide & Co-author of one of my favorite books, The Ultimate Guide to Sex & Disability.

Every so often I will plug the words "disabilitiy sex" or "sex and disability" or something like that into google and see what comes up. Apparently it's been quite awhile as I've never come across the National Sexuailty Resourse Center before. This lead me to google Cory Silverberg (which I am surprised in the 4 years I have owned his book I have never done) and find the video below. It is the first of 2 videos featuring Cory that I am going to post, and discuses how to adapt sex toys to meet your needs as a PWD. ENJOY!

Wednesday, November 3, 2010

How to Survive Therapy: Tips 1-8 Cheryl Style

Just my ramblings gathered from dealing with 8 shrinks over the course of 20 years, so take my advice or leave it.

says you: Hasn't she said she's 25 (and a half)
says me: I know... but that's what it is...
1) Write. A LOT.
Writing helps you express things that are too embarrassing to tell your therapist in person. This has rarely been an issue this time around, but it still is sometimes, even after 3 years. Sometimes you may finally see an opening to discussing something you haven't ever been able to tell anyone. See #2. Make sure they read it before your session. Once they know, they know. You might as well talk about it.

See the other post for another reason why writing is good. Writing just helps you express things period. You might feel put on the spot during a session, or like if you sit there going uuuuummm... for too long you're wasting both of your time and your money. Sometimes it just takes awhile for thoughts to form. Writing gives you that time. Write some, take a break, delete it, write some more. Take a 2 day break and go back to it if that's what you need. Or write it all at once in one sitting if your mind is on the ball. Things definitely come out of my head more eloquently and cohesively on this blog then they ever do coming straight out of my mouth.
2) Find a therapist who is email savvy.
There is no way I would ever see a therapist that didn't have a work email and/or wasn't into checking email at least twice a week. I never realized how beneficial writing was to me until I started blogging. What was horribly frustrating for me was printing things out and spending the first 15mins of each session twiddling my thumbs while she read something she could have read on Saturday or at 1:30 that afternoon.
3) Availability by text is optional.
I would never fault a therapist for setting that boundary. In fact, I know lots of doctors that have work emails, but I don't have any doctors or know of any friends who have doctors or therapists who welcome text access.

My current one does. I find it much more convenient to reschedule by text then to call, wait for her to check office voicemail, call back, miss her call, etc... It also frees me from being tied to my computer like I am with other doctors. That, and well, I get answers MUCH QUICKER. It's also the most convenient way to say "AAARRRGH! The stupid cab hasn't shown up yet," When it's 2:55 and my appt is 3.

PLUS, if, for example, I am extremely irritable on Thursday, but am fine by my appointment 5 days later, the chances are I'll have decided there are much more important things to talk about in the 1hr I have. Maybe there is, but maybe this is important. The jury is still out on whether or not this makes me codependent, but I'd rather mention it right when I am irritable then not at all.
4) If you don't like to write, try art. Or, even better, do both.
I like to do art when I'm extremely anxious. Others I know like to do art because not only are things too painful to talk about, they're too painful to write about. However you can get it out is a good way to get it out.

If you're really into art, try an art therapist. Just because someone is a board certified art therapist (has the letters ATR-BC after their name), doesn't mean you can get money back from your insurance company for your time with them. To do that the person has to have ATR-BC after their name, but additionally has to have one of the following groups of letters as well: LCSW-C, PhD, PsyD, LPC, LCPC, DSW. That means they have separate additional training in psychotherapy. I don't agree that this is necessary, but it's the way it is.

It's obviously more challenging to have a therapist review your art work in advance, but it isn't necessary like it is with writing. Reviewing art should be a dyadic process. There's too much complexity to art to gain a true understanding without asking questions.

By the way, if you go to someone who has one of those 6 groups of letters after their names, but is missing the ATR-BC, you're not really doing art therapy, you're just playing with crayons in a therapist's office. To find an art therapist check the link above, or in Maryland try the Maryland Art Therapy Association.
5) If you leave your therapist's office feeling like you want to punch a wall, and you didn't feel that way when you went in, find another therapist.
If they try to twist things around and convince you that you're the problem, not them, definitely find another therapist. If you believe them and schedule another appointment and then get home and go "what have I done?" Call back immediately, tell them you just remembered something you forgot, and you'll have to call back to reschedule. Then find somebody else and forget that person. Don't call back.
6) If that happens, DO NOT pick a new therapist out of a book. Ask someone or someones that you trust for a recommendation.
If you've been to a lot of therapists in the past, (I mean, this is my 8th) you know what you want and what you don't want. My main criteria is that when I ask a therapist a direct question they actually answer it. "What do you think?" is not an answer. "I can't say right now. I need more information," IS an answer.

Don't be afraid to ask the therapist what their approach is and to tell them what you like and don't like on the phone before meeting them AND during the first session. I was told by the 'what do you think' people that answering questions "isn't therapeutically appropriate," so I found someone who agrees with me that this is
7) If you walk into your therapist's office feeling like you want to punch a wall and you think their assessment is completely off the mark, I encourage you to argue with them.
If they insist on keeping you in the little box they created and are unwilling to explore other possibilities that coincidentally have that same specific common symptom, consider getting a new therapist. See #6 (unless they won you over and you now, truthfully, agree with them).

However, if they agree with your assessment right off the bat, keep them and smile to yourself for being an insightful genius.
8) If for some reason you find you can't look your therapist in the eye, don't. Fidget.
This was never a conscious issue with me, but I spent years in therapy fidgeting. Even the bad therapists don't mind. The good ones will have something to fidget with. I'd take my necklace off and play with it. Or, since I've had long enough hair, I always have a pony tail holder on my left wrist. I've broken quite a few pony tail holders in therapy. Those ones that are glued will eventually snap if you play with them enough. Or I'd take my hair down and put it back up. Repeatedly. For awhile I brought in theraputty.

I don't know when I stopped fidgeting. It's not something I was conscious about either, for awhile. When finally I realized it was one of the times went "WOW she's good!"

Any suggestions on what guys can fidget with? Maybe borrow your girl/friend's pony tail holder? I once gave one to a platonic friend (who is bald BTW) and it made all the difference to him.

Tuesday, November 2, 2010

On Work & Disability

Monday, November 1, 2010

Wood's Rules: How Do I Get The Most Out of My Therapy?

I don't know how I got to Virginia Wood's blog. I'm a public follower but she'll never be on my blog roll. She doesn't post frequently enough. As you may have guessed, the main reason I take people off my blog roll (after I find a replacement) is failure to post. Anyway, I never read the blogs I follow that are not on my blog roll, I just don't feel like scrolling through my dashboard. So, I don't know what brought me to check out her blog again back in August, but I did and noticed that she links to a very opinionated practice website. I mean, look at it, check out the FAQs-- the one about using insurance to cover therapy. Most people can not afford to keep insurance out of the equation, even if they are using out of network benefits, which in my case are good thank god. Why make people feel uncomfortable about it? At $80-$150 a pop depending on qualifications and geographic location, if you have a serious mental illness, you'll go bankrupt.

Totally going off on a tangent... The point of this post is that I looked around her site (I find it tacky and distasteful that she continually links to her facebook fan page) and found a list of how to benefit most from therapy. "This is really good," I thought. "I should blog about it." And then I forgot. Until last Friday that is, when Therese posted Sue Atkinson's 9 rules for surviving therapy. These lists are completely different and I think it's beneficial to look at them both.

  • Talk
  • Talk a lot
  • Talk some more
I went to a therapist for awhile and sat there and stared at him ALOT. We stared at each other, and then I'd look at him and say "WHAT," if he didn't decide to start opening his mail or walk over to check his email while he waited for me to say something. Sometimes he would tell me the weather report. Often he could tell that I was about to say "WHAT" and would say it first.

I was rather surprised when I started talking to this shrink the 1st appointment, even though I couldn't stand her at the time. It felt WEIRD not to just stare at her, but then again, she isn't an asshole. I guess that was the 1st good sign -- me talking more then she does. That is, after all, the point.
  • Keep a journal [or a blog AND every once in awhile go back and look at old stuff, reviewing both the new posts and revelations about old posts with your shrink]
Recently a friend asked me if I write poetry and I said "Not that much, but I did write this, back when I was so messed up I had therapy 2X a week." The catalyst for writing it was something my psychiatrist had asked me earlier the day I wrote it that I hadn't been able to articulate in her office. I just needed another half hour to chew it over, and I was able to give a much more extensive answer then I ever could have done in her office. She was immensely grateful I took the time...
  • Write down your dreams
I know everyone dreams every night, but is it weird that I only ever remember my nightmares? That I don't write down. I can remember that I was so freaked out about getting somewhere on time (something that is hard for me) that I woke up in a panic 2hrs early...
  • Don't drink or drug 24 hours before or after your session--or better yet, stop using altogether
Why is it that all my treating professionals think it is wrong to use alcohol as an alternative treatment for pain management?
  • Attend regularly--especially when you don't want to
That's when I make sure that I go. Even if my apathy makes me late. Not that I think it does me any good... I'm too depressed to get anything out of the actual session. However, having a reason to shower, get dressed, get out of bed, get some fresh air, does me a world of good.
  • Pay attention to, and talk about, your feelings about your therapist and your therapy. Or, from the other list, even if after ten agonizing sessions you still think that the therapist hates your guts, it may be worth going on, but tell him or her.
I've never had a shrink that hated my guts, but I have had a few where I hated their guts. I'm batting 1 out of 4 in the bad shrink department (out of 8 total). How do you know if a therapist is truly bad (3 out of the 4) or if you do just have to really stick things out (the 1 out of the 4)? I don't know...
To be continued...

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