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!

Sunday, February 27, 2011

An Update on Finding a PA

So far, NADA. I live within a mile of 2 different schools, both with equestrian teams. One has a barn on the premises and their coach is on faculty full time, so I sent her an email a week and a half ago. I've heard nothing back. 2 days ago I posted on the other school's equestrian team's facebook group and sent something to their gmail. Nothing, but it has only been 2 days.

[this picture of me and Cadance the horse is 3 years old, not new, FYI]

I'm getting nervous, being that it's almost March. I have options of either going the look for a student that can drive but who doesn't know their way around a horse route (sending 2 more emails, which is free) or putting classified ads in both of the school's papers. That gets pricy. One school charges $24 for the first 60 words and the other charges $10 for the first 30. Being that I had trouble getting it down to 60 (see below) I'd probably just submit a 60 word ad there too, which will cost $19. Unless someone can help me cut it down.
Disabled & looking to hire student to pick me up at *censored* at 1:45, EVERY OTHER THURSDAY, starting April 7, drive me to *censored* Horse Center, *censored city*, help me tack my horse, drive me home, 2/3mi from *censored school*. Through 2011-2012 school year preferred, through end of Sept 2011 minimum. Pays $25 cash EVERY OTHER WEEK. Contact via email *censored*
So what would you do? Emails or classifieds?

Saturday, February 26, 2011

ADAPT Activists Storm Wisconsin GOP Headquarters

A side of the Wisconsin Protests not many have heard
It is small as protests go these days in Madison. A line of advocates, activists, and people with disabilities, some in wheelchairs, maneuvers its way through the slush Thursday, past honking horns and over puddles, from Capitol Square to a squat, nondescript office building at 149 E. Johnson. "Our homes, not nursing homes!" the protesters shout. Bringing up the rear on crutches, his right leg amputated below his knee, is John Nousaine. He has driven down from Superior to join this mission.

The line of 25 or so protesters closes in on its target: the state Republican Party headquarters. While an advocate holds the door open, a stream of motorized wheelchairs twists, turns, bumps and backs its way through the building's narrow halls until it comes to a halt in a small lobby right outside the office of the party's startled executive director, Mark Jefferson. A few protesters and a service dog roll right on in to Jefferson's office, past several glass and brass elephants and an autographed Badgers football, and up to his desk.

"What's this about?" he asks.

"It is about our lives!" says Dane County Board Supervisor Barbara Vedder, who was paralyzed in a car crash years ago and gets around in a wheelchair.

It is around noon Thursday, the start to what will be a two-hour occupation of the state GOP headquarters, the latest salvo in a battle by advocacy groups to get word out about Medicaid provisions buried in Gov. Scott Walker's budget repair bill that would, they say, allow his administration to gut the public health programs many of them depend on.

It is also a kind of protest that Madison has not yet seen. Over the past two weeks there have been all kinds of demonstrations in the Capitol. Firefighters have marched with bagpipes. Family doctors have written medical excuses from street corners. Break dancers have slammed the marble in the Rotunda. Yoga instructors have greeted dawn with chants. Children have brought their stuffed animals and sleeping bags to the statehouse for sleepovers. But nobody had ever just marched right into the GOP headquarters and tried to take over, Jefferson says.
Activists tell him they are there because they are desperate.

They believe that changes to Medicaid programs in the bill, including provisions that will hand unprededented powers to the Walker administration to circumvent state laws and normal legislative processes in revamping the public health plans, could lead to cuts in their benefits that will force many of them back into the institutions that once housed most people with disabilities. And they don't intend to let that happen without a fight.

"Are you even aware of the MA provisions in the bill?" Vedder asks. "We are able to be in our home with jobs and be productive members of society because of Medicaid. We don't want to be put into nursing homes. This budget bill is not repairing us. It is destroying us!"

Jefferson asks what that has to do with him. "I'm just an operative," he says. Protesters explain they won't leave until he arranges a face-to-face meeting with Walker. Jefferson says that the Governor is too busy. "It's a very trying time up there," he explains to the crowd. "He's in the middle of a budget crisis."

"We're in the middle of a life crisis!" Vedder replies.

Organizers working for Wisconsin ADAPT and Southeastern Wisconsin ADAPT, twin activist organizations devoted to keeping people with disabilities out of institutions, had been secretly plotting the surprise takeover for several days in hopes that their action could finally grab the spotlight for people with disabilities and on Medicaid, whose plight has been largely overshadowed by debate over labor issues. "We're not leaving until we get something!" several in the group shout.

"What you've got is an ear," Jefferson says. "We haven't allowed folks to just come in and take over before without an appointment."

"Thank you. That's real sweet," mutters Roxan Perez of Milwaukee, who needs to use a motorized scooter to get around because she has multiple sclerosis.

Over the next hour or so, the two sides try to listen to each other. Several of the protesters tell Jefferson why they think cuts in Medicaid would hurt them. His response is to say that the bill, by getting rid of collective bargaining, would "free up local governments to prevent some of these cuts from happening." The crowd doesn't buy it. "Why are you pitting people against each other! That's crazy! That's bull----" says Jerome Holzbauer, a Milwaukee retired school teacher who has earned a Ph.D in rehab psychology and has cerebral palsy. "You're going after the most vulnerable!"

A woman asks how Jefferson and the Republicans and others with wealth are "sharing the pain."

"This has a lot of people on the public dime," he says, gesturing to the crowd in his office. On the other hand, he works in the private sector, he says, which is also hurt by the economy because "we have to rely on fundraising to keep our doors open."

Jackie Turner asks how he justifies policy changes in the bill that would hand the Walker administration the power to make unilateral decisions about Medicaid programs, eliminating lawmakers and people like her from the process. "How could you support something that doesn't require legislative and public input?" asks Turner, who lives in Monroe in Green County and has been a paraplegic since a car accident left her in a wheelchair decades ago. "How can you support that? Please answer that!"

Jefferson replies that he understands that "department bureaucrats making cuts gets people upset," but that the provision has precedent: the Department of Natural Resources has initiated similar rule changes. "DNR is animals, fish, squirrels. We are humans! Do you understand the difference? Yes or no?" says Joe Kunz of Madison, who has muscular dystrophy, from his wheelchair.

The protesters are determined to speak, though for several speech is difficult. John Donnelly has cerebral palsy, and his face twists with effort as he tells a reporter why he has come in his wheelchair to the protest. He depends on Medicaid benefits, his friends help explain, to participate in community based programs and to live in his own apartment, with home aides who help. It takes several seconds for Donnelly to get each word out, but he does not give up. "I'll ... die ... before... I go... into one of those facilities!" he finally says.

To read the rest of the article (this was only half of it), click here. 2 other articles here and here.
I went to my local MoveOn rally today in Annapolis with two other Maryland ADAPTers. Anyone else go to one?

Thursday, February 24, 2011

Quote From Some Random Guy

Yesterday I went to Annapolis for the senate hearing on the "Lorraine Sheehan Health & Community Services Act." I can't tell if it went well or not, we shall see. This post isn't really about that.

I got picked up by paratransit where I live and got to Annapolis right about the time I said I needed to be there, however my 5:15 pick up from Annapolis that was supposed to take me to OOO didn't come until after 8. While I was waiting in the lobby of the Miller Senate Office Complex for 3hrs (thank g-d I had brought both my lunch and dinner with me) 2 crowds of people from 2 different events both arrived and left. I got many puzzled looks from people on their way out.

At about 7:30 I even got offered a ride home from some guy. He asked me where I live and I told him the city. He then said he was going my way, he lives in Baltimore. Did I want a ride? A guy I'd never met before...

He then takes out his wallet and is about to show me his business card.
"I work for the Carroll County government," He says. "So you can trust me."
"That's ok," I replied. They said they'd be here about 8."

Since when does working for government make someone more trustworthy?

Wednesday, February 23, 2011

All Chairs Look Alike (an Almost Wordless Wednesday)

[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."

Apparently all chairs look exactly alike.

Monday, February 21, 2011

National Medicaid Budget Cuts News

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.

Sunday, February 20, 2011

Becoming Proud and Powerful

I had most of a long post on spasticity done for today when it got erased. So here's a video, because I don't have time to write it again.

Friday, February 18, 2011

Thinking of Starting a Mah Jongg Game

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.

Thursday, February 17, 2011

White House Federal Disability Budget Fact Sheet

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.

2012 Disability Fact Sheet

Tuesday, February 15, 2011

A Quoteable Quote From a Regular at OOO

He's the KING of one liners!

Monday, February 14, 2011

I'm Hiring My First PA

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!

Any advice for a first time employer?

Saturday, February 12, 2011

Things Only an ADAPTer Would Say: Back In Time Post #2

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 :)

Friday, February 11, 2011

Quote From DD Day

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?

Wednesday, February 9, 2011

Since When Do They Make IPad Apps for Cats?

My brother's cats, Jet on the left and Killer on the right. I found the pic on his fiancee's FB page back in Dec. Game for Cats

Tuesday, February 8, 2011


Sunday, February 6, 2011

I Can't Post One Without the Other

From The Maryland Reporter April 5, 2010. Somehow it never got posted here.

Disability Advocates Demonstrate for Tax Hike

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

What will we be up to next? Just wait and see...

Saturday, February 5, 2011

On Willowbrook

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!

Thursday, February 3, 2011

All People Who are Bipolar are Violent

[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?

Wednesday, February 2, 2011

Mary and Max

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+

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