It's Beginning to Look A Lot Like Fun*Run Time
Wednesday, December 29, 2010
Monday, December 27, 2010
I DO NOT HAVE A TRAUMA BACKGROUND.
I DO NOT HAVE A TRAUMA BACKGROUND.
"It's not something that's ever entered my mind with you."
These things weren't traumatic, they were MY NORMAL.
Friday, December 24, 2010
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
Saturday, December 18, 2010
Wednesday, December 15, 2010
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.
Tuesday, December 14, 2010
Monday, December 13, 2010
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...
- munchy snacks
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?
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.
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.
A lot of my friends are obsessive swimmers. I like to run. And ride horses.
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.
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.
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.
Even if you have to order take out from some place like campusfood.com because you're too depressed to go out to buy groceries / take food out / make the food that you have or even get out of bed to go to the other room to get your phone to call in a delivery. Unfortunately, you do have to get out of bed to answer the door when the food arrives. If you don't eat enough you'll start feeling physically ill and that's the last thing you need when you're depressed.
Because even if you don't leave all day you can still say you did something.
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.
Sunday, December 12, 2010
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.
Saturday, December 11, 2010
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.
Friday, December 10, 2010
Thursday, December 9, 2010
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.
Wednesday, December 8, 2010
Tuesday, December 7, 2010
Monday, December 6, 2010
Sunday, December 5, 2010
Saturday, December 4, 2010
Friday, December 3, 2010
Thursday, December 2, 2010
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.
Wednesday, December 1, 2010
Tuesday, November 30, 2010
Monday, November 29, 2010
Sunday, November 28, 2010
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
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
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
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
It is sunlight
When you practice seeing
Strength and beauty in everyone,
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
All these practices bring power, and power
Makes you proud.
You get proud
Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.
Practice until you get proud, and once you are proud,
Keep practicing so you won’t forget.
You get proud
Saturday, November 27, 2010
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
Tuesday, November 23, 2010
Sunday, November 21, 2010
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.
Saturday, November 20, 2010
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
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
Spitfire always has a sign like this on her chair. It says "Nursing Homes = Hitler's Final Solution" and has some swastikas
Banner says "DEFENDING OUR FREEDOM" I'm all the way over on the end in the baseball cap. Did I post this before?
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!
Tuesday, November 16, 2010
Monday, November 15, 2010
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.
- 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?
CART: The call will have real-time captioning (CART)! The website for where you will be able to view the captioning is: http://www.2020captioning.com/livefeed.php?event=AAPD . 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
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
Thursday, November 11, 2010
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:
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
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 babble.com Are More Kids Bipolar? That article links to articles from the New York Times and Slate, all good reads.
Tuesday, November 9, 2010
Monday, November 8, 2010
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.