Make noise, make it happen often and soon you can change the world for GOOD ~Marlee Matlin
It's Beginning to Look A Lot Like Fun*Run Time
It's ALREADY that time of year again: The ADAPT Fun*Run for Disability Rights is April 22nd 2012. Maryland's fundraising goal is $8,000 this year. Yes, that's right, $8,000
Donate $1! Donate $10! Donate $100! Donate $1,000! JUST DONATE so we can FREE OUR PEOPLE! http://adaptfunrun.org/runner.php?id=7 I thank you very much for your support!
[Me in my Quickie in 2007 in Israel, left, and in my Jazzy on the train in Chicago in 2009, right]
My Jazzy broke on the 14th. My back right wheel came off. I need to write a post about it. This is not that post.
Fast forward a few days. I run into my across the hall neighbors while I am on my feet. "Hi Cheryl, how are you?" "Not good," I reply, "My chair is broken."
Fast forward a day. I have a habit of sitting in my doorway in my Jazzy while on the internet. This time I'm in my Quickie which I have gone periods of over a year without using. It's a piece of crap. Across the hall neighbor walks out of her apt with her laundry. "I see you got your chair fixed," she says. "No," I say, "This is my other one."
2 nights ago coming home from Annapolis I walk into the lobby of my building pushing my Quickie from behind. The woman working the 4-12 shift at the front desk goes "I see you got your chair fixed."
Maryland ADAPT is currently, as we speak, in Annapolis, our state capital, with our newest member Toni Torso (below) talking to legislature. Check out UpittyCrip for live updates through the next 4hrs.
On the left you see Toni, a quintuple amputee, sitting in her manual chair modeling her purple 3elove zipper hoodie and orange shorts. She is wearing 7 buttons with different disability rights statements.
On the right you see a close up of Toni's MTA Mobility (paratransit) ID. You have to have a photo ID to get into the building of course. Sorry there's glare. The shirt she's wearing in her ID photo (thanks Texas) says "DON'T CUT MY SERVICES"
While you wait to see our news coverage, here are some other Medicaid budget cuts news headlines from around the country sent out by NationalADAPT through Twitter last night.
Having absolutely nothing to do with any of the typical topics of this blog, I went out shopping yesterday to buy accessories for my dress for my brother's fast approaching wedding, and the accessory store we went to had 3 pairs of earings, each tiny mah jongg tiles in a different suit. As earrings were being sold "2 for" we got earrings for me for the wedding and my mom got a pair of mah jongg earrings for a present for a friend.
I've been thinking about mah jongg since then. Not the computerized game, but the actual board game [see right] that Chinese men and Jewish women play. My mom taught me how to play when I was 13 or 14 while I was home for months after my largest surgery. I have my own set and I used to play all the time with her friends and occasionally her friends daughters, but like horseback riding, playing mah jongg is another one of those things that I used to enjoy which I haven't partaken in in long time.
Mostly older Jewish women play mah jongg and there are a lot of seniors in my building. I don't live in the most Jewish area of Baltimore, but any area of Baltimore has a higher Jewish population then most of the country. So I am thinking of trying to set up an every other Monday evening mah jongg and chinese food night in my building's party room with women who live here and also play. Something to use my mind. A thought.
I'm not going to comment because I haven't even read it, but I thought I'd distribute. Maybe I shouldn't, maybe I'm distributing government propaganda, but I'm not capable of creating original content today.
To follow up from last years Valentine's Day post I will be starting horseback riding lessons in about 6 weeks I hope! I will be starting a temporary part time job and will be saving most of that $ for horseback riding lessons. I can hopefully stretch the $ out for a year by only going once every other week. The problem, which is not a problem is that paratransit only operates within .75mi of a bus/train line and of course barns are in the country and buses typically don't operate in the country.
I was fortunate enough to find a barn in civilization that has both a typical and therapeutic riding program, but of course it is still 0.9mi from the closest bus stop says google maps, and the paratransit scheduler people say it's 1 street too far. Although I could find the closest possible address and huff it, that just isn't my idea of stress relief. That's stress creation, and riding is supposed to be stress relief. So I'll be paying someone (a student) to drive me there and back. There is a state program that could pay back most of the $, but I've heard there's a waiting list, so I'll be paying out of pocket and looking for someone who'll do it for cheap. I have several options of places to look. I'm rather excited!
I found this post saved as a draft from way back in 2009. I don't know why I never published it, so I'll publish it today because I just don't have the umph to post something new.
On June 26th, 2009 I went up to my friends' apt to make the 2hr conference call to the Office of Civil Rights (OCR) at the federal Department of Health & Human Services in Chicago. My friends have a landline with free long distance and I have a cell on a family plan, which at that time didn't have many minutes on it. A few days before my friends had been cleaning and uncovered a box full of toys that had been left out for me to play with. Things like buttons, brightly colored vests to be worn when you are rolling in the street, bumper stickers, and 7 sets of handcuffs were in there. Man had they been holding out on me. I've been wanting a disabled and proud bumper sticker (right) to put on my chair for ages and there they had several hiding out in their closet. I put that on my chair right away [it fell off rather quickly], but when I left I forgot my handcuffs. I wanted to hang them on my bedroom door for decoration.
The next day I went up to their apartment for dinner and a movie. I walked into my apartment afterwords, went straight into the kitchen to get something to drink to take my prozac with (glad I'm off that), sat down at the table and went "Oh man! I forgot my handcuffs again!"
My roomate just looked at me. "If you took that out of context..." Then I went "She had this box of toys that she left for me to go through [oops... how does that sound?] and there were several pairs of handcuffs in there."
The story only gets better. The next day I went up there after an advocacy group (CDRC) meeting to get my handcuffs and chill. I had taken the left over pizza from the meeting, so when I left I took my pizza box & my handcuffs (still in the package) onto the elevator that somebody was already on. She looked at me. "Pizza and handcuffs... must have been some party."
"It's a long story I said."
These handcuffs have useless keys because they have a super safety. The package says they are for use by ages 8+. Any one else find it disturbing that 8 year olds are being encouraged to play with handcuffs? Even if they are playing cops and robbers... ADAPT babies are another story :)
I went to "Developmental Disabilities Day at the Legislature" (DD Day for short) today, which is run by the ARC of Maryland. There's a breakfast and briefings on the current situation in the state for those of us needing DD services, and by that I mean services paid for by state Medicaid (medical assistance) dollars and most likely overseen by the Developmental Disabilities Administration (DDA). So I was in line at the registration table and a mom comes out to one of the people working registration. She holds out her name tag which is hanging around her neck.
"Do you have another one of these?" She asks. Then she cuts off the person, who is about to ask who's name she's looking for. "No, just the holder," she says. "My daughter would like to chew it."
As the person goes to hand her an empty one, she motions that it would be easier if she also had the string so she could put it around her daughter's neck. Without blinking an eye, a string appears, the empty badge holder is placed in her hand, and the mom walks off.
In my head I chuckled. Most of the time in most of the world a request such as this would be seen as such an oddity, but here today it was a no-brainer easy request to fill. Why can't it always be that easy?
A small group of people with developmental disabilities demonstrated in the State House lobby Monday night, chanting “10 cents makes sense.”
The group was frustrated with failure to pass a major hike in the alcohol tax to help pay for services for the disabled. Alcohol taxes, now about a penny a drink, have not been raised in more than 30 years.
Senate President Mike Miller and House Speaker Michael Busch have said for months that the legislature would enact no tax increases of any kind this year.
At the end of the video, Sgt. Larry Barnes, a state trooper who is the sergeant-at-arms for the House, told the group to quiet down, but he promised to try to get them in to see Busch and Miller. According to Busch’s office, the speaker later went out to meet with the group, but they had already left the building.
Small Group Protests Over Possible Medicaid Cuts
From Brian Witte, AP, January 17 2011 Photo & Video from WBAL Radio.
Disabled Maryland residents called on the governor on Monday to avoid budget cuts to Medicaid that they fear could seriously damage community-based support services.
About 10 people held a brief rally in front of the marble staircase that leads to Gov. Martin O'Malley's office inside the Maryland State House, down the hall from the Maryland House of Delegates and the Maryland Senate. The state is facing a $1.6 billion shortfall for the next fiscal year. The rally was held four days before O'Malley is scheduled to disclose a budget proposal he says will fill the hole entirely with cuts.
The participants chanted: "We want O'Malley," "Don't cut our services" and "I'd rather go to jail than die in a nursing home" during a protest that lasted about 10 minutes. Participants are members of a grass roots disability rights activist group called Maryland ADAPT. They say Medicaid cuts could force disabled people from communities into institutions.
"We wanted to come out and share our concerns about what may possibly happen," said Floyd Hartley, who spent three years in a nursing home before finding out about a Medicaid program that enabled him to move to a home setting. "We're hoping that they don't happen, but we're here to interject to the governor that these cuts can be detrimental to many individuals within the state."
Few people were in the building at the time of the rally. Lawmakers are not scheduled to gather for session until 8 p.m. O'Malley was in Baltimore commemorating the Dr. Martin Luther King Jr. national holiday and volunteering at several events marking a day of service.
O'Malley, a Democrat, has emphasized that his proposal will be the beginning of a dialogue with the Maryland General Assembly about how to handle what is expected to be a difficult budget year due to the evaporation of federal stimulus money that helped the last two years.
O'Malley has said he will keep an open mind about any new tax proposals, but he has said he will not include any tax increases.
The Maryland Department of Health and Mental Hygiene made up about $8.9 billion of the state's budget last year. About 70 percent of that is in the Medicaid program, which comes with a large match in federal funding and provides services to about 1 million people in the state.
O'Malley is scheduled to make his budget proposal public on Friday.
The article appeared in the following places. One of these days I'll link to everything.
WTOP - Baltimore Sun - Bloomberg News - Delaware Online - Forbes - Connecticut Post - MSNBC Business - Canadian Business - Business Week - Yahoo Finance - Greenfield Daily Reporter - Darien News - Daily Finance - WUSA - WJZ - WBAL Radio - Times Union - Beaumont Enterprise - The Star Democrat - Greenwich Time - Delmarva Now - News Times - Stamford Advocate - Daily Journal - The Republic - ABC 27 - MD Daily Record - Frederick News Post - Cecil Whig - WBOC TV - Media Dis&Dat Blog - WBFF - WAMU - Fox5DC - CNBC - Pharmacy Choice - Maryland Reporter
At about 45 secs in Geraldo says "...the tragic result of Bernard's being incorrectly diagnosed as mentally retarded, though his actual condition is cerebral palsy. There is nothing wrong with Bernard's brain."
Someone needs to tell Geraldo that CP is a brain injury.
As you can see, this video is fully captioned. Thanks NDRN!
[The one picture I had of me was awful, so here's a picture of the back of my co-presenter's head]
A follow up to Sunday's post. I can't believe I didn't write about this at the time. My brain is moving a bit slow, hopefully I can capture what I want to say. I was asked by a friend last fall to present a one hour workshop on self-advocacy during a conference for disabled girls ages 12-25 (so technically I should have been an attendee, not a presenter, made it awkward in my head). She couldn't make it, I filled in. I started of the presentation the same way I've started every presentation over the last 10 years -- talk about myself.
"I'm Cheryl *censored* I've been involved in advocacy for 10 years. Yadda yadda yadda. 3 years ago I was diagnosed bipolar..."
That's when I was interrupted by an attendee. This woman was 21 or 23 or something and has a cognitive disability, which I would like to be able to blame, but truthfully I blame the media. I blame her disability for her lack of inhibition and willingness to ask, which I am thankful for.
"I heard all people who are bipolar are violent," she said.
I was taken aback and unprepared, and second guessed my response. Being that it's been almost four months since that conference and I'm just writing this now, I don't remember word for word what I said, but here's the gist of it:
"For me," I started, with a stress on the me, "I get very depressed. I spend a lot of time by myself and have a hard time being with other people. There are different kinds of bipolar, and the kind I have means most of the time I am depressed, and I found out I'm bipolar because medication I was on made me not sleep as much and talk too fast, and made me very energized. But then we switched my medication around and everything evened out so that I don't get too depressed and I also don't get too energized."
That's close enough enough to what I said. I took great pains to keep my answer to me. When I went through my trainings we were told to talk about us. I'd spent almost a year and a half at that point going to OOO where we take great pains not to give advice, not to tell someone what to do, but rather share our experience and how things are for us.
So that is what I did, because that is how I've been "brainwashed" to talk about disability. I truly believe that you can't generalize disability because everyone's experience of disability, even the same disability can be so vastly different. I didn't want to say "No, people who are bipolar are not violent," because there are some people, of course, who are. But most aren't (this workshop was before the Giffords incident FYI). Should I have said that? Should I have generalized? Not stuck to just talking about me? I don't know if I actually answered the question. Did I? What do you think?
I saw the movie Mary and Max exactly a month ago. This is a still from the movie. It is Max's hand and the heart says "LOVE YOURSELF FIRST." I found the still on this blog where there is a review. I give it 6 stars out of 5. Although claymated, this film is not for kids. I'd say 14+
I'm 26 and am working part time as a Peer Support Specialist (psyc disability related) while I figure out what I'm doing with the rest of my life. I have cerebral palsy and bipolar II and I blog about my experiences with this because 1) I have a loud mouth and I like to use it 2) all the writing keeps me sane & 3) I value the community.
ENJOY!
[Me in my Quickie in 2007 in Israel, left, and in my Jazzy on the train in Chicago in 2009, right]
