Finding My Way: Journey of an Uppity Intellectual Activist Crip

Intersections

2012-01-23T18:20:00.033-05:00

Some editions of the Disability Blog Carnival have talked about intersections. The intersection between disability and feminism or religion for example. I've always had a hard time with these and usually skip those.

But today, today I learned something about the intersection of bipolar and CP that is invaluable to me. I shouldn't go to the gym when I'm manic. But of course I wasn't manic in the least this morning. I got home though and the first thought that came into my head was "I feel like death." Not anywhere near the way I felt like death here, but on that spectrum. I haven't slept in 2 days. And even before then I was sleeping enough but it wasn't quality sleep. I was tired but AWAKE! A feeling I HATE! And when I got home I was both more revved up and more worn out. OOPS...

I've realized that there's a delicate balance of energy expenditure when you have CP. Don't use enough and you won't get good quality sleep. You also won't produce enough serotonin. Your body wasn't meant to be sedentary. Use too much and you'll be nonfunctional. Yes this is true for any human being, but for us spazes the tipping point is more sensitive, the balance more precarious. Ok, not new news, but manic episodes can be like bowling balls, and I realized today that I should try very hard not to nudge the ball towards the pins. A spaz does not fall down gracefully, but rather with a thud :-D

My lack of sleep will gently nudge that ball. Each morning I wake up early pushes the ball closer and closer to the pins. So why tempt things? Why expend any more energy then I have to? As much as I need to go to the gym, my personal trainer appointment was probably a bad idea. As much as I need to keep moving (if I wasn't typing I'd be fidgeting), I need to try to keep still. I need to counterbalance the lack of sleep. Slow down the ball, not speed it up.

~~~~~~~~~~~~~~

I had put in a call to my latest psychiatrist yesterday to discuss something different, but of course said, "I'm going away on Friday and I'm manic. what do I do?" instead.

"When did this start? I just saw you."

"Today," I simply answered. I wanted her to think I woke up this way, not that it started 3hrs before she called. I needed her take me seriously.

But she didn't take me seriously. Not enough time. "How do you know?"

How do I articulate it within a 7min phone call, most of which was spent telling her why she can't prescribe anything a psychiatrist would prescribe as the 1st line of defense. Tried them. Don't work. It's taken me well over an hour to write this post; to gather my thoughts.

All I could think of was "I feel like I was run over by a truck." I told her I didn't sleep for the past 2 days (me get up at 6:45? SCARY) and that I know I won't sleep tonight as I have too much energy. She wasn't any help to me because she doesn't understand the intersection of CP and bipolar. She doesn't understand the presentation of my atypical manic episodes and panic attacks. Heck I did say I was irritable for no reason the other day, didn't I? Although I really don't think this is what that stemmed from.

All I have to say to my shrink is "I feel like I was run over by a truck," and somehow she understands. She doesn't even have to say anything. Just a look. A look that says, Uh Huh. Add in 6:45am for good measure, and she'll say "you're probably right."

But my psychiatrist is the 4th psychiatrist who's told me that 6.5hrs of sleep sounded like enough sleep to her. She's the 4th psychiatrist to not understand that when I say that I need 9-10hrs of sleep I mean I need 9-10hrs of sleep a night. She's the 4th psychiatrist to apparently not have any training in chronic fatigue. Does she need to see me a mess to really understand?

I had 1 pdoc who still didn't understand. The pins were down, but the balls kept coming 1 after another without stopping. Couldn't get even 1 pin set up because they were coming so fast I had to keep my hand out of the way! Still she'd just throw up her hands, blame it on me. Blame me for trying to stop the balls using anything I could think up.

I'm trying to be proactive this time. Catch it before the 1st ball has started rolling. Right now it's just about to drop to the ground. Do something to stop it now! To put it back on the shelf, not down the lane.

So how do I know?

Well, I'm generally annoying when I'm manic, and after not being able to stop talking for the previous hour, and suddenly finding my mind racing about nothing in particular, no racing thoughts, just pent up mental energy, my brain screaming "DO SOMETHING!" I put the 2 together immediately and said to myself, OMG I'm manic! Make it stop now! Just those 2 things were enough, combined with the lack of sleep. Add in some long rambling emails within the last couple of days, and the length of this blog post (taken be about 2hrs to do) and you have the cherry on top!

Now is not a good time. Maybe later? After the 9 days straight where I have to be able to sit through meetings or airplane rides without constantly interrupting people, which I do all the time when I'm manic. OK? Can you do that for me brain? Pretty PLEEZZZE?

I Wish

2012-01-23T00:12:00.011-05:00

Most of the time I like the fact that I'm crazy. I may quibble over the labels in my head -- am I really bipolar, or am I just depressed? Is my anxiety a seperate thing all together, or a package deal? -- but I generally like myself. Or at least I generally accept myself. That's not to say I don't set goals, don't want to be a better person, but I've always been at peace with my disabilities. Ask me as a kid if I could take a pill that'd cure my CP would I? And I don't think I've ever in my life said yes. I've been asked this question many times.

I've never said either out loud or in my head that I didn't want to have CP anymore. Maybe I wished I could do things like jump rope, but that's not the same thing. If someone told me I'd have to give up my disability to do it, I'm almost certain I would have said no. Correct me if I'm wrong, but I must have been 6 at the time. Somehow I've always known I'm a package deal.

What's this got to do with being crazy? Well sometimes I get so consumed by crazy, that I let out a sigh and/or an ARGH or a GAAAAHHHHH!!! in my head. Sometimes I say "Why do I have to be this crazy? I HATE BEING CRAZY!"

And then a half-second later I say "Don't say that! You don't hate being crazy!" Please tell me I'm not the only person that talks to herself in her head in the 3rd person...

What sparked this post was I was wondering to myself, why do I chastise myself? Who cares if I decide I hate being crazy? Why do I care? Because if I do truly hate being crazy, then I hate being me, and that's the worst thing to hate. I guess I somehow knew that when I was 6.

So then what do I hate? I hate being consumed by crazy. I hate when my crazy becomes overwhelming. I hate that my crazy holds me back from doing what I want to do, while at the same time I do realize the opportunities it's giving me.

I'm at odds as to whether this is ok. Whether hating these things is the same or different then hating the crazy in and of itself. They're not concrete things to hate like jump ropes. If it is the same thing as hating my crazy, then it's not ok. It's not ok to hate yourself. You're stuck with yourself 24/7.

Is it wrong that I wish my life wasn't so hard, so frustrating, because of my crazy? I don't know, but I do.

I Love Using the Internet for Good

2012-01-19T23:28:00.008-05:00

Right now, I'm irritable. I'm in one of those moods where it's everything and nothing. It's things I've complained about here before, and things I won't bother complaining about. I'm Just IRRITABLE! I'd blame it on the mood disorder, but you can't blame bipolar for everything. I think I'l have to blame "human being disorder."

Anyway, one of my new favorite things I discovered a few months ago is using the internet for peer support. And you're probably gonna say, "That's not new, such and such has had a website for 15 years!" But I argue there's a big difference in the value of support from people you actually know.

Where else is there to go for peer support in the wee hours of the night besides facebook? It's using the internet for good.

My November 10th status update from 1am when I couldn't sleep says "anxiety is worse then depression, but better then mania. Discuss." I'm glad I no longer remember what made me so anxious, but I tagged the first 10 people I could think of who identify as crazy and managed to start a meaningful discussion within 6mins.

Then there's my Oct 21st status from 12:17am "has a sudden fear of having a panic attack while I'm sleeping tonight. Not a completely irrational fear as I've had them before. Coping strategies anyone?" I didn't even think to tag people that time, and I still got a response in 2mins. About 25mins later, someone posted an idea I'd used successfully many, many times before, which has always worked. Don't know why I hadn't thought of it first, but I was able to sleep that night.

So I've decided to take this to my blog. What are some things you do when you're irritable that tend to help snap you out of it? Writing this is helping me!

and a very important PS -- I very rarely actually look at other people's FB pages as it fuels unwanted obsessive behaviors, but if you tag me in a status update in this genre, I'll be sure to add my 2 cents!

6 Questions on Passion

2012-01-14T16:43:00.009-05:00

I've wished in the last year that I'd taken some time to be reflective / introspective about my life and after spotting this meme on Jay's blog I decided to take the opportunity.

What puts a smile on your face?

Following what makes you truly happy is a wonderful way to figuring out what you were put on Earth for. Think about something that you do or that perhaps you used to do that brings you total happiness!

Furry creatures like dogs, cats and horses, NOT mice or squrils or things like that. 18 months ago I was visiting my brother all the way in California and one of his cats curled up on the right side pillow and another curled up behind my bent knees. I tend to toss back and forth and sleep diagional so it was hard to get a deep sleep while trying not to disturb them, but they put me completely at peace. It's also hard to be at a barn with all the dogs and ponies without being as mobile (and short) as I was when I was a tween. It's hard for me to bend over to pet dogs, and it bothers me that over the years I made a consious decision to make my balance worse. I've been longing to bury my head in my ponies neck, but I've been too afraid s/he'll move and I'll fall over. I wish I didn't always feel like I have to keep my distance these days.

What do you find easy?

What we find easy for us to do, will be related to what we are passionate about. It’s very hard to hate something that is very easy for us!

Information and referal. I always pay attention when people mention resources and love, love, LOVE when I can hook someone up with agencies/services that solve their problems and improve their lives.

What sparks your creativity?

Think about something in your life where you seem to always expand its horizon, always coming up with new, fun, and exciting ideas relating to that subject. Whatever makes you creative is something that you are passionate about.

I haven't been super creative in years, since the last time I had an extended hypomanic episode :( It's sad because creativity is one of the things I value the most.

What do you like to talk about?

Most of the time, we aren’t aware of this. A good way to figure this out properly, is to ask your friends. Ask them what they believe you like to talk about the most, what topic makes your eyes brighten up, and changes your entire behaviour.

I like to complain about the injustuces in my world. The lack of housing vouchers, people like nursing facility social workers who purposely hide community resources, lack of knoweldge of affordable health care, for example. When I'm at On Our Own I frequently talk about depression, whether it's the things I'm not doing like dishes, or the things I am doing, like horseback riding and personal trainer appointments, or the rush I get from activism.

What makes you unafraid of failure?

When you do what you are passionate about, you have total confidence in your abilities. This makes you not worry about failing, because in your mind, how can you fail when you do what you love?

I'm always affraid of failing because I've failed so much in my life that I mostly expect to fail. Sometimes though I purposely go into something with very low expectations, like bowling, or horseback riding. I can't fail when I have realistic expectations.

What would you regret not having tried?

If you were at the end of your life, what would you regret not having pursued? What would you have liked to do, that you didn’t get a chance to?

I deeply regret not going back to school and not having been able to finish my degree when I was so close to being done. I wish I wasn't taking an extended break.

Communication, or, How People See You

2012-01-04T23:08:00.016-05:00

So yesterday I attempted to discuss my communication difficulties with my shrink, however I did a crappy job of conveying what it was I wanted help trying to improve, because I have communication difficulties.

So then today I went to OOO, and I was like, well ok, I have to come up with something to talk about, so i might as well ask people how to rephrase what it was I had been trying to say. Except I'm afraid I didn't make much sense as I was kind of tongue tied and tripping over my words.

The thing I'm worst at ... well the thing I'm 2nd worst at, besides cleaning, is communication.

After which 2 people, one who has known me maybe 3 months give or take, the other though has known me about 2.5 years, both told me how great they thought I was at communicating. Well ooook.... my entire family will strongly disagree with you, but ooook...

Sometimes I wonder what people use as the basis for impressions, because I just don't get where this one came from!

Happy New Year!

2012-01-03T10:30:00.002-05:00

"Wow"

2011-12-26T21:04:00.021-05:00

I may have to delete this post if my new personal trainer (my 3rd) ever finds out I have a blog, but I need to get my frustration out. It started with cab drivers. A few of the few who actually try to make conversation while you're in the car will ask me if I live with my parents. When I answer no, that they live an hour away, they react with shock. Surely then I must live with a roommate. Nope, that didn't work for me. One cab driver just couldn't wrap this around his head. How do I cook, do laundry, or go grocery shopping? Surely my parents must come up once a week to deliver me food. Safeway & Giant deliver if I couldn't do it myself, but I prefer to roll the 2 blocks or 15mins to get my food myself. Save the delivery charge. If I couldn't do that, I still wouldn't live with my parents. I'd have staff.

I've been saving since July and finally have enough money to go personal trainer shopping, as my last one has a new career. It's something I used to know was non-optional, and now rediscovered as such. I saw 2 trainers at 2 different gyms in 5 days. For the first time I settled on a trainer who has no previous experience working with PWDs. She's way better then the guy I saw last week who's supposed to have tons of experience. Plus her facility is more accessible and just as accessible public transit wise. My last trainer was there, so I knew.

All might be good, except her non-experience lead to "wow" when I told her how long I've lived here, alone, and that I'm working. I'm sure it was a shock when I showed up with my chair, although I did mention disability/spasticity on the phone. When we were almost done she turned to me and said,

"Your parents must be so proud of you."

Why?

"You're working and you're living on your own."

It turns out she's better then the physical therapist I was seeing in the summer/fall, but GROAN!

My parents are annoyed that I don't try harder and make more money. My parents are always frustrated with me. My parents don't expect anything less of me then any other 26 year old, although they understand modifications need to be made, like later working hours. So my response was just "eh."

I left and I thought of how sick I am of this. All the cab drivers and other people who may smile at me on the elevator, looking almost as though they want to pat me on the head. I'm loud and obnoxious and I can be a pain in the ass, not amazing, just human like you. Except maybe not quite as clueless.

I'm a Work in Progress: Work, School, & All That Jazz

2011-12-25T16:35:00.010-05:00

I work for a non-profit organization that has 5 different locations. I currently work 2 days at 1 location and I'm on call a third evening a week at another which is much closer to my house. Between all of our locations we're open 6 days a week, but the most any one center is open is 4 days. I heard through the rumor mill that my location would be getting a grant to expand and offer more services, and we would be open more days. Yesterday it was confirmed by our executive director that my location would be open 7 days a week, meaning that current employees should be getting more hours and maybe some on call employees from other centers would get permanent hours. Although he wouldn't say anything specific other then that the expansion will begin in February.

This is really exciting news as another shift means a 50% pay increase which will allow me to be more financially independent, feel more like an adult. They're also the perfect hours for me. I don't have to be at work until 1pm, don't have to leave until 11:45am (to get somewhere 30mins away, paratransit, ARGH!), so I have my alarm set for 10am. It gives me an "excuse" for my chronic fatigue to not be perceived as laziness. "I'm never up that early, I work off hours."

I've also for the last 7.5 years wondered how I'm supposed to work enough to be completely financially independent and still have time to do the things that will keep me mentally and physically able to work. Right now I work Fri/Sat. If I can manage to work Thurs/Fri/Sat or Thurs/Fri/Sat/Sun this would allow me three weekdays for horseback riding, massage appointments, shrink appointments, and personal trainer time AND allow me to pay for them. I also have some meetings related to long term care reform that are conveniently held on my off days. Working weekend afternoon/evenings -- MY DREAM JOB!

I wouldn't mind mornings if they weren't so early in the day!

The problem? I want to work & be more financially sufficient but I also want to go back to school and finish my degree. I can't imagine fitting horseback riding, massage appointments, shrink appointments, personal trainer time AND working 24-35hrs/week, plus keeping up with my advocacy work, even if I take 1 class. I can't see fitting in a class with my current schedule without it being a once a week class. Maybe I could fit in a Mon/Wednes late afternoon class or a Tues/Thurs morning class? But when would I have time to do my homework? Would I have to wake up at 7:30am everyday to study for 2 or 3hrs? Would I have to go to the gym from 8-9pm? Would I collapse from exhaustion from constantly running around and getting a 1hr sleep deficit everyday? Because then I physically wouldn't be able to read, study. So would I have to quit working when I decide to go back to school? Then how do I pay for my horseback riding lessons, massage appointments, shrink appointments, and personal trainer time -- the supports that will keep me in school?

Such are the dilemas of life...

Judgement

2011-12-20T23:20:00.015-05:00

It's the end of the year. My insurance has an out of pocket maximum, after which point you no longer have copays for visits of any sort or medications. I received a $13,000 powerchair at the end of April, and unlike last year when we met the cap in Dec, this year all of a sudden in the beginning of July my whole family got practically free healthcare. We still had to pay the monthly premium, but we all began thinking up ways to capitalize on this. I continued to go to physical therapy past the point where it was useful, because it was free and a trainer costs $. After 6 or 7 years of talking myself out of getting new AFOs, because most years I've worn them less then half a dozen times, so what's the point, I got casted for a new pair last week, just under the wire. I also decided to try out a new primary care physician, since it'd been 14mos since my last physical, even though the plan had been to wait until April. I also managed by fate to get my annual follow up with my physiatrist moved from January to December.

Oddly both of those appointments, although not originally scheduled this way, ended up being yesterday. I really like my new primary care physician (PC), and even though I never plan on seeing her because I am the healthiest person I know, it's nice to know that I found someone I am comfortable with. Although I noticed slight judgement in her voice. If both of those appointments hadn't ended up on the same day I wouldn't have noticed the same judgement from my physiatrist, whom I have seen just over half my life.

PC doc who saw me walking down the hall, came in and almost immediately said "the baclofen & valium are for muscle spasms from cerebral palsy?" which wasn't noted on my paperwork because there wasn't a line next to "other."

"yes."

"What's the lamictal for?" I was a little surprised she didn't ask me if I had seizures, as 1 in 3 people with CP do. Maybe that was on the list and I didn't check it

"bipolar." That wasn't listed on the form either, so I had checked both depression and anxiety instead.

The next question she asked me was who my psychiatrist is, and then she asked me how I was doing in respect to that. My physiatrist asked me the same question although the conversation went like this. "J. M---. I have a new one again and I don't like her all that much either." And I got a look, which was fine then, but not the next one, when she asked me how I was doing. Actually, it was really the tone in her voice when she asked me. She has every right to give me all the looks she wants. I didn't name this blog "Uppity Crip" for nothing. She knows half the time she tells me not to do something I do it anyway. Flashback to my Aug appt: "You really should have consulted me before you did that." "I did. I didn't like your answer." :-)

Anyway, the tone in her voice was the same tone I'd gotten that morning. It was as if to say that I'm not capable of doing what I should be doing, that I don't know. It was as if to say that people with this diagnosis don't have the capacity to make responsible, smart decisions. That we're all a mess 100% of the time. PC doc doesn't have a right to make that judgement. The other one knows just how much of a mess I've been over the years, but I'd still like some credit.

I mentioned this to my shrink this afternoon in less words, and she gave me a look. It was a different look. It maybe had a hint of exasperation. So I replied with "I know what I should be doing..." Infer from that what you will, but I do try.

This isn't enough to send me looking for another PC doc, because it was a tone of concern from both of them, not a tone of fear. Not a tone of "all people with this diagnosis are violent," but to me it was still a tone of well meaning prejudice.

Well meaning prejudice, you ask? How can there be such a thing as a well meaning prejudice? Well meaning prejudices are "permissible prejudices," statements or thoughts that are so ingrained in society that they are taken for granted as truth. Mary Johnson does a fantastic job of discussing permissible prejudices as they relate to disability in her book Disability Awareness -- Do it Right! The inferiority of black people used to be a permissible prejudice. Now even racists know that society frowns upon them even if they don't give a damn about it. See this page for the definition of a permissible prejudice as it relates to homophobia. In my google search I noticed people referring to homophobia as the last permissible prejudice. What about prejudices against fat people? What about ableism, which encompasses every disability, including this one? I beg to differ with that blanket statement.

It rubbed me the wrong way, being judged by smart people who I'd hope would know better. But if they really don't know better, if they had no clue they were giving off a vibe, is it really right for me to judge them for judging me? It's what I'm trying to figure out, but I so far have no conclusion. Because if you really know me and you judge me on the basis of me being me, you might be right, even if it doesn't feel good.

Never in my Life did I Think This Would Come Out of My Mouth

2011-11-23T12:33:00.006-05:00

"I like you a lot when you're sober."

Although I never thought I'd be working with homeless people. Life is full of surprises.

You Know You Have CP When... Or, I feel like a Masochist, but It's Like Giving Spinach to Popeye

2011-11-14T15:12:00.015-05:00

I was getting another massage this morning, as I haven't been since the last time, and right after I got on the table I looked at her and said "I feel like such a masochist." Now who would ever say that?

For those of you who are maybe reading my blog for the first time, I have cerebral palsy, and CP is, among other things, a chronic pain condition. At 26 I know my pain triggers. I'd be worried if I didn't. And lately I've been beating up my body over and over and over again. And I'm going to keep beating up my body over and over and over again because it's more then fun.

It started last Sunday when I sat and wrote the entire November Freedom Flyer (to be posted here soon) in one sitting. I know better then that. But I took some drugs and I felt better enough. Then on Thursday I sat my butt in my chair a little after 8am and I didn't get out of it until I don't remember, but it was after 11pm. I had a meeting from 11-3 in DC for Caring Across Generations and then I hopped on the bus straight from the train, and went straight off to Occupy Baltimore. 15hrs and well, I did get up to pee twice during that time, but can you say back pain?

According to the dictionary that is built into my MacBook, besides the sexual connotation, masochism

"(in general use) [means] the enjoyment of what appears to be painful or tiresome : isn't there some masochism involved in taking on this kind of project?

Occupy Baltimore is both painful and tiresome (because paratransit keeps taking well over an hr to get me home at night and then I have to get up the next morning to go to work) and incredibly enjoyable. I've gone 3 times in 3 weeks and I was planning on going today and tomorrow and Thursday. But I didn't make it today because I chose to enjoy a nap instead.

The thing is, this past Thursday I didn't dress as warm as the week before, and it was cold, and my legs went into continual spasming (more like a shiver, CP style) and my whole body hurt, and I have this thing where when I'm sitting in my chair my feet can stay on my foot plate, but when I'm rolling at least the right one is up in the air. It has to do with my quads. In the winter it's both of them, straight out, knees locked. I almost got foot restraints for my new chair, but was talked out of it by the manufacturers rep. Well since I've been a chair user I can't ever remember staying outside for 4+ hrs in weather this cold. Apparently by the end of the night I had turned into such an ice cube that my feet might as well have been superglued to my footplate. I couldn't move a thing.

I woke up the next morning to go to work, and unfortunately a person has to move their arms in order to get out of bed. OOOWWWW! My biceps are sore! And my back is sore. And my neck is sore. And, well my legs aren't so bad, but EVERYTHING is sore!!! "Dress warmer next week," I say. Not, "What am I doing to myself? I should stop."

So yesterday I think "Why am I bothering to get a massage? She'll make it all better, but I'm going riding and then I'm coming home and showering and running 2 errands, and then I'm going back to Occupied until 10pm. And Tuesday and Thursday." There's no point. But of course there's a point.

This morning I wake up and realize I've reached the limit of how many nights in a row I can take my muscle relaxant. It causes horrible side effects and I have to take it sparingly. So almost right after, I go into her office and say "I feel like such a masochist," because I have to make the choice between continual pain or waking up a crying non-functional mess, but I can't quit Occupied. I can't quit Occupied because Occupied to Cheryl is like spinach to Popeye.

Occupied makes me feel alive. I often say that ADAPT national actions are the best anti-depressant I've ever been on. Well Occupied is like a booster shot of AWESOMENESS every single week. Occupied is a place where I can be myself, and yes there are other places I go where I can be myself, but not places that are buzzing with positive energy. Not places that are buzzing with change. Not places where everyone is filled with passion. I can't help but feed off of that, and once a week is way better then twice a year.

Since I've started going to Occupied I'm more functional, more stable, more focused then I've been in a long time. I'm more of the me I want to be and less of the me nobody likes, plus I'm now the proud owner of a pair of ear muffs. So I'm a masochist. Masochism is fun :)

URGENT ACTION Needed to Protect Medicaid Covered Services for PWDs!

2011-10-27T23:26:00.001-04:00

Dear Advocates:

Please take a moment to read this message and act quickly to help prevent people with disabilities from potentially losing access to the long-term services and supports they need to live and work in their communities. It will only take a few minutes of your time. We must act no later than Monday, October 31 by 4:00 pm.

A proposed rule for the Affordable Care Act (the federal health insurance reform law), if enacted, could cause some people with disabilities to lose eligibility for some services that enable them to live and work in the community and not live in institutions. Examples of services that could be impacted for specific individuals, based on the new eligibility rules, include those provided through Medicaid Home and Community Based Services Waivers such as attendant services and supported employment.

The proposed rule could result in many people with disabilities being enrolled in a new Medicaid group – the Adult Group – starting in 2014, because of the new eligibility rules. The new group provides more limited coverage – called “Essential Benefits” - than Medicaid groups that now serve many people with disabilities. The rules could prevent many people from enrolling in other Medicaid groups, including the Medicaid Buy-In (the Employed Individuals with Disabilities (EID) Program in Maryland) and Medicaid Home and Community Based Services (1915c) waivers. The proposed rule needs to be changed to ensure that individuals with disabilities don’t lose services they currently receive, especially those enrolled in Medicaid waivers. For example, many unmarried individuals with taxable income under $1,252/month would be enrolled in the Adult Group and not receive some long-term services and supports.

The federal Centers for Medicare and Medicaid Services (CMS) is accepting public comment on the rule. If CMS receives enough comments suggesting a rule change, the agency MAY modify the rule. You can submit comments by using the following link: http://www.regulations.gov/#!submitComment;D=CMS-2011-0139-0002. Simply enter your name, agency (if any) and comments. Please feel free to paste the following comment, or to submit your own:

“People with disabilities who would be eligible for the Adult Group need to keep access to long-term services and supports in the community that the Adult Group is not likely to provide. Please ensure that people with disabilities can retain eligibility for services they now receive through other Medicaid groups, including Home and Community Based Services Waivers and Medicaid Buy-In Programs. A revised rule should ensure that (1) people are asked whether they have disabilities and need long-term services and supports when they apply for Medicaid and (2) people with disabilities either be exempt from the Adult Group if they need long-term services and supports they can get through other Medicaid groups, or get access to additional long-term services if they enroll in the Adult Group and have or acquire disabilities that require these services. People with disabilities who are eligible for the Adult Group, but not for other Medicaid groups, should still be able to enroll in the Adult Group.”

You Know You Have CP When...

2011-10-24T18:54:00.004-04:00

So I was getting a massage this morning, which is a regular thing now that I've found steady (part-time) employment. Something I'm insecure about, only because I feel like most people don't understand that I've lived with a chronic pain condition my whole life, and if I mention it I feel like they'll delegate me to the category of "spoiled," which is not what this is about.

But that's neither here nor there. I'm probably in the minority of massage goers in that I can't imagine myself ever falling asleep. I find myself too interesting, I guess you could say. I like to pay attention to what hurts how much. It's useful to know. If a problem area hasn't been bothering me and it hurts less then usual, it's nice confirmation. If it hurts just as much, I wonder what's going on. I also think I'm in the minority of massage goers in that even as a kid I paid attention to orthopedists and physical therapists, and I took anatomy and physiology both senior year of high school and sophomore year of college, so I have a decent understanding of what muscles are where. I generally know what she's working on, even if I don't remember the names of 100% of the muscles.

Often, like this morning, when something is particularly painful, I'll go "What's that?" I couldn't quite tell if she was working on my lower back or the top of my pelvis, which is kind of the same thing, but it was something she hadn't worked on before. I could tell she was right at the insertion point of whatever it was.

To get to the punch line of this story, she says "your glutes and your hip rotators." And the only thing I could think of in my head was "If this hurts that much, I've gotta have a firm ass. At least I won't be like 80 years old and have a saggy butt. Score one for spasticity!"

LOL...

I Take Responsibility (a Repost)

2011-10-17T19:50:00.002-04:00

Originally published Feb 2010, I hope the links still work. Something I found today and really needed to be reminded of.

Thanks Beth for pointing me to two GREAT articles recently, one of which I will just mention briefly. Debate Over Cognitive, Traditional Mental Health Therapy from the LA Times touches on whether or not therapists should be designing treatment plans within the context of the medical model. But it is the other article, or rather part of it, that is really the focus of this post. The Americanization of Mental Illness from the New York Times also focuses on the medical model, but more extensively.

I'm not going to sum up the entire article as it is super long (totally worth reading the whole thing though) but I am going to pull out two parts. The discussion on the stigma of viewing mental "illness" within the framework of the medical model ("brain-disease"), as "... an illness like any other" (quote from page 3), something purely with a biochemical origin, versus as something originating from situational triggers ("psycho-social") is primarily located on page four. I'm not going to comment on this section anymore except to say GO READ THIS NOW (I'll wait) because I feel like I'd be repeating myself ad nauseam -- especially lately -- as well as because the opinion is substantiated by scientific studies and isn't just my verbal diarrhea.

There is this one quote from page 3 though that really stuck with me and that I will comment on fully.
"Mental illnesses, it was suggested, should be treated like 'brain diseases' over which the patient has little choice or responsibility." emphasis mine
Little choice or responsibility. Wha? Huh? Seriously? I didn't have little choice over whether or not to be bipolar, I had NO choice. It's not like I woke up one day and said "Gee I think I want to have a major mood disorder." I didn't know until high school that my dad is bipolar and this runs rampant in that side of my family. I just drew the short genetic straw so to speak.

[image description: tiles made by elementary school students in CA (found by google images) surround and illustrate the word Responsibility]

However, I DO have full responsibility over what I do with this information.

I AM responsible for the choices I make, although I often do not practice what I preach.

I AM responsible for the decision to take my medication or not, to go to my support group / therapy / medication appointments or not, to go to the gym or not.

I am NOT responsible for the fact that I will have repeated bouts of depression for the rest of my life.

I am NOT responsible for my panic attacks, especially when I have the ones that start in my sleep.

But, I AM responsible for how I decide to handle this, how / when / if I get control over the episode or if I decide to relinquish my power to my states indefinitely.

Little responsibility? How is that little responsibility? That is BIG responsibility.

I Made a Difference (A Disability Awareness Month Post)

2011-10-13T23:56:00.000-04:00

Yesterday afternoon I was somehow drawn to point my web browser here. I don't know why I would do something so torturous to myself but I did. If you go way down on the page it says

[the powerpoint slide, right, says "Disability & The Human Service Worker October 24th 2007"

The department collaborates with community agencies to sponsor workshops and professional and family education. Annual events include a Disability Awareness Workshop [emphasis mine] a Supervisor Training Workshop, and a workshop in partnership with The Leukemia and Lymphoma Society on relevant issues for families living with childhood cancer.

So of course I was drawn to click on the link below that, which leads to a page that has a whole blurb on the workshop:

Disability Awareness Workshop

This workshop is held each October [for national disability awareness month] and is designed to raise student awareness and understanding of individuals with disabilities. In addition, participants are informed about available resources and potential careers. In 2010, over 180 undergraduate students, faculty and community professionals attended. The 2011 Workshop will be held on Wednesday, October 26. This year's featured speaker is Alison Malmon, founder and executive director of Active Minds. This nonprofit organization develops and supports student-run chapters at colleges and universities in order to educate students and raise awareness of mental-health issues.

If you click on the tags "independent study" and "workshop planning" below, you'll note that this workshop was my baby. I initiated it a week before Thanksgiving 2006. It took until March until I found out I was approved to do it. I waited four long agonizing months, and then spent 7 more agonizing months planning it. It was arguably the most difficult thing I've ever done in my life. I spent most of those 7 months running around like a chicken with its head cut off. But it was worth it. It was phenomenal.

[The 2007 student panel. Please don't ask me why there are no men there. ARGH!]

This is something I wanted to work and be so successful that it would continue, and clearly it has. On the feedback sheets I got comments such as:

"I feel this seminar has changes my outlook on my field in family studies"
"it is critical that the public be made more aware of workshops like this one. I would suggest that professionals spread the word in some way perhaps and evening at a religious institution (church, synagogue, etc.), a fraternal organizations, etc."
"very nice idea! I really enjoyed myself! Even if you are not going to be working with people with disabilities it is beneficial to be informed about society and life"

Looking at MY WORKSHOP (for it will always be my workshop) placed so prominently on the department's website makes me feel good, of course, but it also makes me feel horrible. It makes me feel horrible because I have done nothing with my life since then. My life is one giant pit of nothingness. A person who can change the world like that, that person should...

I stopped myself from finishing that sentence. It won'tever do me any good to finish it. Instead of dwelling on what I should have accomplished since then, I thought about what I did accomplish. I singlehandedly, just by getting mad one day (that post gives a good breakdown the workshop) and deciding to fill a hole in the instruction of many students who will go on to become professionals working with disabled individuals, changed the lives of thousands of people.

2011 will be the 5th annual (!!!!!!!) Disability & The Human Service Worker workshop, and I imagine by the end of this month about 700 students and professionals will have attended the 3hr workshop at least once. If it still does what it's supposed to, if the workshop still brings a lifespan multidimensional view to disability, if it still focuses on peers in a way that a clear connection is made between disability and the audience's (majority 18-23 year olds) life; if people still learn that disability is not a tragedy, that it is many things, least of which is a diagnosis; if people still learn to look at the individual first and what that individual can offer, instead of the narrow view of disability many had before, imagine what kind of impact that can have.

[right, a crowd shot of the 2007 workshop]

Whether or not you chose to work in a clear cut disability related job, disability is everywhere. Imagine just how many clients each of those individuals will come in contact with over the 40 years they will be working, and how differently they will interact with those clients and their families. The positive impact of a three hour workshop won't last for all 700 people, I'm not delusional (It clearly didn't make much or any of an impact for some that were already professionals [and that's just one example of their horribleness, check out some more]) but even if it has made a lasting impact for just 100 people, look at what an impact I made on the world. Look at what an impact just 1 person can make on the world.

When I look back at myself at that time I do so with a large degree of detachment. I don't see me at all (although clearly I'm the one in the pony tail in that second picture), and I can't figure out what being possessed me. I don't see myself as someone who can execute small things, like hygiene and basic cleaning. Forget about changing the lives of thousands. Who me? NAH! You're delusional. Not me! But clearly I did -- it's right there on the website.

And if I did it once, I can do it again. Even if I am a few years rusty. It's not about what a person should have done, it's about what a person can do. And clearly I can do. Even though most of the time I think I can't. I need to remember what I did, and stop focusing on all I didn't.

"One person can make a difference. And everyone should try." ~JFK

Star Stickers: A Winning Strategy!

2011-08-25T20:55:00.011-04:00

I say this now, ask me in a few months...

Last fall/winter I quit all my meds for 6mos. Don't ask me why. Since then it's been a bit of a struggle. Mid May to mid June was abysmal, but from mid June to mid July I can tell you I took one of my meds 80% of the time. Fantastic for me & even my shrink agrees, although the new psychiatrist wasn't so pleased. The other med I've never restarted. Anyway, it's becoming harder to remember how many pills I've actually taken as I've been increasingly running over them. It's a good thing I built up some reserve over the time I wasn't taking it, but the issue is I can't just look at the sleeve and count them.

Back the very end of June I bought a planner. Now sometimes I buy them and sometimes I don't, because I never use them. When you have executive functioning issues, every shrink will repeatedly tell you to use one, but as far as I was concerned, I'd just sit there and roll my eyes. Not my thing. But the thing is that from June-August my horseback riding lessons were few and far between, and my PT appt times are sporadic. Then there've been the Care Congress, more CAG commitments, a few work trainings, "medicaid cost containment" public hearings, MFP subgroup meetings, frequent conference calls, and a botox appt thrown in the mix. I have a history of knowing and remembering exactly when thing A is and knowing and remembering exactly when thing B is, but not realizing until the last second that they are at the same time, and my trainer was doing me a favor and dragging her kids along with her to the barn. The last thing I wanted to do was double book her! Hence the planner...

My shrink, who at this point has known me 4 years, was practically speechless when I showed this planner to her with things written in it. The fact that there's more and more in there, I mean, you should just see the look on her face!

Back to the meds and not knowing when I've taken them, I think you see the connection between that and a planner and the title of this post. She went out of town and my appointments were 2 weeks apart. One of the first things she asked me was "are you still taking your meds?" I looked at her and said "Eh." "How much," she asked. "I have absolutely no idea," I replied, "this time I didn't start with a full pack. But I'm sure it's less then 80%"

I have in the past had a thing for stickers. In my apt I have unopened packs of pony stickers and "Incredibles" stickers that say things like "Good Job!", "Way to go!", and "You're INCREDIBLE!" The thing is that my planner is on the smaller side, as you can see, and they're all too big. So I said to her last week, "You know those gold star stickers, the ones that come in the packs with the silver ones and whatever? As long as I'm actually using this planner, I might as well go buy those [see right]. I just can't seem to get motivated enough to actually go get them."

That's a really good idea!" she said. Now that look of shock and the sound of utter amazement that an idea such as this would ever come out of my mouth, I don't know if I've ever seen that. "Plus, you're giving yourself a gold star for taking them!" OK, *eye roll*, cheezy!

A few hours ago I finally made it to a store that carries them to buy some. FYI, neither CVS nor Safeway carry them. As I can only remember as far back as Aug 20, that's where they start. The stars were $1.68 for a pack of 715 in 5 colors and the neon dots were $1.88 for a pack of 475 in 4 colors. I couldn't decide what I wanted, so I just bought both. That's over a years worth of stickers for $3.56 +tax

Realistically I don't think they'll motivate me into better compliance then say 85%, but they'll give me a nice picture of things that is nice to have. Everyone is always so concerned about my levels. I'm using 3 colors, pink dots for my mood stabilizer, gold stars for exercising (ok, I'm not gonna lie, they do make me smile!), and green stars for my antidepressent. Note above that there are no green stars :( It's too much of a time sensitive med and I'm just not getting it. This is a very accessible strategy, as it doesn't cost much, and even blind people can feel the stickers different shapes. All I have to do is dig up a paperclip and secure them to the front of my planner.

Like I said though, ask me in a few months if I even have a clue where my sticker packs are. My strategies tend to fizzle. If I don't I'll dig them up and mail the leftovers to you for free.

Depression Strikes Again!

2011-08-22T23:42:00.011-04:00

It happened suddenly between Wednesday and today, and this time I know exactly what the trigger was. I spent a few hours on Friday night after I got home from work (yes, I work now) writing a very long post on it, but have decided to delay posting it and instead emailed it to my current psychiatrist and my shrink instead, who is being very inconsiderate and decided to go on vacation RIGHT WHEN THIS HIT ME. You know, she's supposed to be clairvoyant and all and see everything coming and cancel her vacation just for me! And in case you're thinking "OMG you're being so inconsiderate, bothering this poor woman while she's out of town," I view it the same as if I left a message on her office voicemail. She's under no obligation to read it now. She'll read it eventually.

Anyway, tangent over. Today I woke up and spent the entire day in bed. You know, except for when I had to pee, cuz who wants to lay in a pee soaked bed if they can help it. I took a nap in the evening. I barely ate anything. I didn't bother to take any medication until 4:30. I have quite a few blog posts floating around in my head, such as "No, I'm NOT Into S&M," "I Don't Shave My Legs and I've Decided I Don't Care if You Care," "My New Psychiatrist Refuses to Enter the 21st Century and I'm a Hypocrite" and "One of My Most Embarrassing Moments," which revolves around my period, but I can't figure out why anyone would care about any of this. I also have some back posting I want to do, and a late Freedom Flyer that hasn't even been started.

When it was passed 3:00 and I was still completely naked, I texted a friend and asked her if she could do dinner. I had a cute outfit picked out for the day (my favorite color!) but I couldn't get myself to put it on. I forgot she has a standing 6pm Monday shrink appointment, so we scheduled for tomorrow. she's not doing well either :(

However, I woke up from that evening nap well after 7pm and said, "That's it, you're going out now." And I did. I went to the mall for 45mins and bought a milkshake and socks I wouldn't need if I'd just do my laundry, because I decided that if wearing clean socks tomorrow was going to make me feel less depressed, it was worth the $. So if you count a cake batter flavored milkshake as a meal, I ate 2x today, I got dressed in clothes that make me feel good, I was briefly outside during the 1 block roll to the mall each way, and now I'm writing this dribble, because even if no one cares, writing is therapeutic for me. So I did 4 things today even if it took until 8pm to do them. That's more then I used to do, an improvement. Proof that I've learned something from WRAP even if the one I wrote has been lost for like forever and I never wrote a new one. :D Props to me!

What do you do when you're depressed? Because no one really answered me last time...

Disbelief! (a Repost)

2011-07-26T22:08:00.008-04:00

I was going through some old posts, and my linked within widget lead me to the below posted college entrance essay, originally written in 2003. I wrote it for the MC Scholars program (I didn't get in). You had to write the book jacket from your memoir you just finished in 2025, when I am 40. I thought I'd repost in honor of the fact that for the second time in just over a month I participated in the beginning stages of writing disability related federal legislation that will affect the lives of millions of people. Today was related to the Caring Across Generations campaign, in June it was the latest version of the CCA. At the time I never in my wildest dreams thought that would really happen. The original post has a bit more on how my life is really turning out vs what this says would happen.

Triumphs Over Struggles: The Ups and Downs of Life with Cerebral Palsy is an ordinary book about an ordinary person who fought for ordinary things. It is the autobiography of Cheryl *censored*, a wife, mother, and social worker at Gillette Children’s Specialty Healthcare, a hospital that services pediatric orthopedic and brain disorders exclusively. She has spent her whole life fighting. Although most people associate segregation with the 1950’s and 60’s, the 1980’s and 90’s were filled with just as many battles for Cheryl. It was the age of the Americans With Disabilities Act, but Cheryl was still continuously denied access to life. She fought for both the right to attend a local preschool as well as her neighborhood elementary school, which contained 32 steps down to the playground. An avid horseback rider, Cheryl was also almost refused the right to attend a local horseback riding day camp.

Besides all of the adversity Cheryl has faced in her life she has been able to triumph over it all. Cheryl endured eight reconstructive operations on her legs during her childhood which resulted in her having to relearn how to walk four times. Through all of this, Cheryl, whose parents were told would never amount to anything, remained an honor student in school. She attained her associates degree in psychology through Montgomery College’s Scholars Program and then finished her bachelor’s degree through Hofstra University’s Program for the Higher Education of the Disabled (P.H.E.D). Cheryl later received a master’s degree in social work at The University of California, Berkeley.

Through her advocacy for people with disabilities, Cheryl has made a significant impact on the education of mainstreamed disabled students. Cheryl started lobbying local disabled rights organizations in college. Since then she has been interviewed by many media giants, such as NBC’s Today Show, Good Morning America, and The New York Times. The Cheryl *Censored* Education Act is a Federal education bill aimed at setting a national standard for the education of students like her. It is currently being reviewed by the House Education Committee.

Cheryl lives in the suburbs of St. Paul, MN, with her husband Matt of twelve years and three adopted special needs children, April, May, and June, ages 9, 8, and 6, whom she has had since infancy. She has two dogs, Eloise, and Puck; a cat, Mizzy; and a horse, Apple Blossom. Cheryl and Apple Blossom are in training for the 2028 summer Paralympic Games in Rome, Italy. They have won many ribbons for dressage in both local and national disabled riding shows. When not in training, working in the hospital, or lobbying Congress, Cheryl enjoys shopping, running 5ks for charity, and working as her synagogue's high school youth group advisor.

I've Finished March!

2011-07-22T22:43:00.001-04:00

...and half of April! Back in May I told you I'd be back posting, and I'm finally half way into April, which will post directly to the 2nd page, as some of my March posts have. Posts from March 13, 14, 19, 23, & 29 all actually posted in the last 3 weeks, and are on the 2nd and 3rd pages. July's posts also did not go up on the date shown. Some of the earlier ones actually posted after later ones (July also isn't done). So come take a look and see what you missed!

You Know You Have CP When...

2011-07-20T22:35:00.004-04:00

I've decided to follow in Emma's footsteps, or treadmarks more accurately...

I got a new powerchair almost 3 months ago. I know, I know I have to back post the whole saga of how this came to be. It's rather comical. My new chair looks like this picture but not exactly. It is a Quantum Q6 Edge, just like the picture, but as most of you know everything is super customized.

Over the past 3 days there have been almost 2 dozen emails going back and forth between a Pride employee (they make the chair), my WHEELCHAIR dealer, the repair guy, their purchaser, my PT, and now a friend and my Dr, because I need some outside advice, about A JOYSTICK MOUNT. I know what you're thinking and it is totally ridiculous.

Tonight, like every Wednesday night I went to On Our Own and when it was my turn to speak during the support group I started out with

I had PT at 3:30 right before I came here, and there's all this drama with my dealer

Then I realized, I went OMG in my head, what that sounded like and very clearly changed the end of my sentence to

about my joystick mount for my chair. And there were so many emails she made me miss my bus and I had to call a cab, and I still got there on time but...

Humorous isn't it? My life is never dull.

You Know You're a Life Long ADAPTer When...

2011-07-19T11:55:00.001-04:00

A quick one this time...

So I get off the elevator for my PT appt and one of the people who work at the desk, he's the scheduler person, sees me walking towards there to sign in and says

Uh oh. Here comes trouble...

To which I say

You have no idea how much trouble I am. I protest the government. My friends handcuff themselves to the White House fence... and I stayed around the corner :( because my parents are stupid and will un-cosign my lease if I'm not careful :( ...

What are we protesting? Medicaid reform. Or rather stupid Medicaid reform. We're the anti-block grant brigade.

He seems like a cool guy, although I've only known him 4 weeks. I wonder how he picked up the vibe?

Quotes from PT: You Know You're a Life Long ADAPTer When...

2011-07-17T14:29:00.000-04:00

Haven't had one of these in a LONG time!

So I started PT, a recommendation I got through 2 ADAPTers, so I like to wear my more interesting shirts to keep her more entertained. Like my "shiny things distract me" shirt, where a pair of hand cuffs are portrayed as bling. That's one of my 3 favs.

Recently I wore another one of my favs, it has our logo really big, and then below it it has a quote:

A good friend will come and bail you out of jail... but a true friend will be sitting next to you saying, DAMN... THAT WAS FUN!

It got a chuckle. A bit into my time another PT looks at me and says he's trying to read my shirt. I smooth it out so he can. Then he says, "I would ask if you've ever been bailed out of jail, but I think I'll leave that alone." To which I respond without missing a beat, "You're not allowed to bail out. It's against the rules. You have to wait."

A while later my PT is trying to get some measurements of my ROM and in order to do that on one side she has to climb up on the big mat/table I'm on, between me and an older gentleman. She looks at him and says, "Don't worry, I won't bite, if you behave." The man jokingly goes "If I behave... those are the key words. Has [his PT] been telling you stories about me?"

To which I look at all 3 of them and say, "That's no fun. Who wants to behave? Behaving is boring. My favorite shirt (the 3rd of the 3) says 'well behaved women rarely make history'"

Next White House Disability Call

2011-07-16T11:52:00.001-04:00

In order to help keep you more informed, we are hosting 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.

This call is open to everyone, and we strongly urge and ask that you distribute this email broadly to your networks and listservs so that everyone has the opportunity to learn this valuable information.

If you received this email as a forward but would like to be added to the White House Disability Group email distribution list, please visit our website at http://www.whitehouse.gov/disability-issues-contact and fill out the contact us form in the disabilities section or you can email us at disability@who.eop.gov and provide your full name, city, state, and organization.

The next call will take place on Wednesday, July 27 at 1:00 PM Eastern.

The call will feature information on technology, Section 508 of the Rehab Act, independent agencies, emergency preparedness, employment, budgetary issues and other topics.

I would encourage you to call in about five minutes early due to the large volume of callers.

The conference call information is below.

Dial in for listeners: (866) 298-7926

Title: White House Disability Call (use instead of code)

Date of Call: 07/27/2011

Start Time: 1:00 PM Eastern (dial in 5 minutes early)

This call is off the record and not for press purposes.

For live captioning, at the start time of the event, please login by clicking on the link below.

http://www.fedrcc.us//Enter.aspx?EventID=1796804&CustomerID=321 Please be respectful and only use this feature if you are deaf or hard of hearing.

Again, please distribute widely.

Content

2011-07-13T22:20:00.001-04:00

Yesterday I went to the Caring Across Generations Washington DC Care Congress. It's all about getting more rights for domestic workers, including PCAs. I wouldn't consider myself a labor advocate, but ADAPT was a big sponsor, so they wanted a showing. Initially I felt guilted into going (I have standing Tuesday afternoon plans), but I am so glad I went.

On the Caring Across Generations site you can watch the morning portion of the Care Congress (Warning though, I think it's four hours), see all the religious, labor, elderly, and disabled activist groups that sponsored (there are tons), listen to personal stories, and look up where/when your local care congress will be held over the next 13 months.

To give you a little background on what it took for me to get there, up until my 20s I had panic attacks in Target. My directional sense is horrible, I still cannot ever seem to find the front of the store, but now that I'm a chair user the anxiety has dissipated. I'm not wearing myself out like I was. Nor do I seem to care when I get out of there.

I started off my day from my parents' house, being that they live an hour closer then I do, and hopped on the bus to the metro. Turns out the elevator was out at the stop, so I hopped on another bus to the next stop (making me late, but so what), rode the metro where I needed to go, got off, rolled half a block down the correct street, noted that the numbers were going down, not up, turned around, and found the hotel without any trouble.

I couldn't help but beam. That was something I was never completely certain I'd be able to do, and I didn't even bat an eye (I think that's the expression) when I did it. It was a good start to a very long and tiring 19hr day, as I hadn't slept a full night in 5 days at that point.

It was more then nice to see and relax with some super awesome activist crips and labor activists whom I either just met or hadn't had a chance to see in a couple of months, as they live all over the country. It was also a good chance to be myself and to be viewed as an individual with enormous potential to affect change in the lives of millions of people, even though I don't know nearly as much about labor issues as others there. I felt smart, I felt accomplished, I felt valued, and oddly enough I didn't feel inferior to anyone there. I've had an inferiority complex for YEARS.

After giving it some serious thought before I made a comittment to go, it turns out I also didn't give a crap that I ditched my shrink appointment to go. I didn't need to go. I needed to be there. I needed to find the hotel alone without having a panic attack, to navigate both me and a friend through the metro to a resturant I'd never been to before, and to have social interaction beyond the walls of the local nuthouse (where OOO uses donated space). So I texted her at about 10pm. Old habits die hard. I told her I felt [a word I refuse to use in relation to myself], for lack of the ability to find a more appropriate word at the time. I had more fun Tuesday night then I can remember having possibly ever, and later came up with those words that had alluded me at the time.

I felt HAPPY. I felt CONTENT.

"Life is what happens when you're not at your shrink." True that!

I don't know if I've ever felt content in my life. I don't think I've felt happy in 3 years (well, maybe at National Actions). I can't remember when I didn't feel inferior. I mean, I grew up a cripple. I didn't have any happy and content crip role models growing up. I'd never met a confident, content wheelchair user until 3 years ago. I knew it was possible, but man did I have some roadblocks.

I've known for years that I needed more then just medication and therapy to keep me stable and functional, but I didn't have have the resourses to access what I needed. This dramatic development didn't happen on it's own in issolation. So I'd love to keep going, but this post is long, and I already talked about that a little. Maybe there'll be more tomorrow.

On Rolling In the Street: the Saga

2011-07-11T11:11:00.008-04:00

Yet another horsey post. You're just going to have to put up with them, I can't help it! Lately I've been thinking about horses more then I think about botox, which is really hard to do, because when I think about Bentley I think about botox and how we can change it up so I can "get back in the saddle" again (I've been riding bareback) without feeling the need to cry. I wish I'd actually paid attention to "you have to stretch your adductors or you won't be able to ride a horse." They actually weren't kidding! But enough with the tangents...

Therapy Doc wrote a post yesterday that was very loosely about horses (and posted pictures like the one to the right that made me go OOOOO PONIES! and squeal a bit in my head, like I used to do out loud when I was 5) and a bit less loosely about riding her bike on the shoulder of a busy road.

Riding in the street and ponies: 2 things that are very closely related in my life. If I have the choice, of course I roll places on the sidewalk, but sometimes you are just completely stuck. Some scenarios: Say you get to the end of a block and a curb cut is either completely missing or being torn up by a construction crew. The one on the other side is fine. What do you do? Go home or roll back half a block to a driveway and then dash as fast as you can?

Snow is the worst because people tend to shovel snow into curb cuts and the amount of snaking back and forth between street and sidewalk is maddening. My mom lives in what could by some be considered a remote area, but really it touches one of the biggest cities in the state. So it's a little woodsy. I have no sympathy for you mom. I live in a more urban area compared to her, even though I'm not in the city. She once commented to me about how much easier it must be for me in the snow. I said "You have no idea. You have a car! People don't shovel sidewalks and bus stops!" The aftermath of snomagedden had me constantly praying for my life. The bus stop outside my building always gets cleared ASAP but when I got somewhere I'd discover their bus stop had 5ft of snow on it and so the bus couldn't pick me up to go home.

Some information: Paratransit will only drop you off within 0.75mi of "fixed route transit." That means a bus/light rail/subway/metro stop. It was designed to make accessible what is available to the able bodied and less disabled public. If somewhere isn't reasonably accessible to them (0.76mi, they're strict) paratransit won't go there.

Which brings me back to ponies. Ponies don't generally live close to bus routes. Can you imagine a horse trying to catch a bus? I was thinking of riding at ROSES but they're way out of range. Found this other place, called up twice and said "Can you tell me if you go to this address?" Twice I was told yes. But then I tried to book a ride. A no go. A google maps investigation revealed that they are 0.9mi from the closest bus stop. So I looked into getting a PA. He moved after a few weeks, which is just as well, because he had a thing for me and it was awkward. Must do a back post about that.

In the few weeks he was around, I stared at bus stops and buildings along the road. One day I spoke with a friend, a wheelchair user who likes to describe herself as being the size of an 8yo. "I think I found a place," I said, "but it is still 0.3mi up the road." I figured car drivers have a harder time seeing her, and if she would do it...

"You can't roll 0.3mi in your new chair?" was the response.

"Well there's no sidewalk, but the shoulder is really wide and the road isn't all that busy."

I would never roll in a lane. I'm nuts, but I'm not suicidal. I also would never do this in the dark, but this was May, or would never get dropped off at the closest place they would take me (0.1mi closer) because it is across the street, and I would never cross traffic in the middle of the road. This place is on the same side of the street, and it's actually next door. It borders on their hayfield. ARGH! They refuse to take me next door because although their property is well within limits, their driveway isn't!

"So what's the problem?" she asked.

"[I listed some people] will freak out."

"Well don't tell them."

Except how are the people at the barn not going to find out? They did freak out. But what would YOU do? Look for a new PA to pay $3o to drive you round trip or pay paratransit $3.70. You know what I'd do... We're trying to figure out how to get some sort of bubble placed around the place since their property is within limits. If it wasn't I'd let it go.

In the meantime I was convincing drivers to drop me where I was really going instead of next door, explaining the situation. Most of them were cool and understood to keep it on the down low. Until the last week of June when someone thought she was being helpful and called the address change into her supervisor. I'm lucky they didn't kick me off, but they're watching me, I'm on their radar.

So for now my trainer is picking me up from next door, but I'm still OK with rolling down the street. It's not rush hour, it's not busy, it's broad daylight, and the choice was pay a PA or get half hr massages, so I won't feel the need to cry [see 1st paragraph]. What would YOU do?

Need Advice From Female Wheelchair Users: To Switch or Not To Switch?

2011-07-10T21:17:00.000-04:00

Back in 2006 I did a 10pg research paper on physical and sexual abuse of women with disabilities. I'll try to post some references tomorrow. While what I read didn't surprise me, it sure did scare me. There were multiple categories I focused on such as spousal/PA abuse, abuse by parents/relatives, and what scared me the most, although I am pretty mobile and this is unlikely to happen to me, is the possibility of abuse by medical professionals. One or two articles I read talked about women who reported being refused access to their mobility aids until after they were taken advantage of.

When I aged out of my pediatrician, I went 5 years without having a physical, which scared me. I've heard of people who caught serious medical conditions before they were symptomatic, just from a routine well check up, and if I'm going to have a serious medical condition, that's how early I want to find it. I wasn't so worried about abuse as I was about some Dr being annoyed by me. I have inconvenient spasticity issues for some exams, if you catch my drift, and I was worried that if things took more time they might not be so receptive to having me as a patient. I didn't want to just pick someone out of my insurance book and go in blind.

Then one day I met 2 married wheelchair users, and some time later in the middle of a conversation I realized hey, I should go to their doctor. At the time her office was less then 2 miles from where I lived, now it's across the street. Being rolling distance, now walking distance, is definitely a perk.

In the little over 2 years since I got that referral I've been over there 3 times. I don't have much use for a primary care doc other then relieving my constant anxiety that I have some kind of cancer and I have no idea. The 1st time she was OK, and it was a big relief that she was, of course NOT phased by my spasticity. It was a very trusted recommendation.

The second time I went I thought maybe I had strep, and that's when I realized she must double or triple book. I waited a ridiculously long time even though I had called ahead, and then saw her for less then 5mins. Turns out it was just a cold.

When I went for my second physical I also waited way over an hour for an appt scheduled in advance, and she definitely rushed that appointment. By the time I finally saw her I was cutting into her lunch hour.

Back in March I thought I had a serious reaction to one of my meds (I didn't) and my psychiatrist never got back to me even though I emailed him pictures and called him to let him know I emailed him pictures (so I ditched him, it wasn't the 1st thing he did, it was the last straw). I was trying to avoid the ER. When I couldn't make the one time I was given, her office staff never got back to me with an alternative. I went to the ER.

I read recently in Urbanite Magazine that a very local community hospital is doing some revamping in preparation for the implementation of the ACA. If you don't want to read the whole article, basically in a few years if practices change certain things in regards to the treatment of MediCARE patients the government will give them a bonus. They're really doing an aggressive campaign and since I've been typing this post I've heard their radio commercial about their brand new satellite primary care offices twice.

I'm by the main hospital once a week. And by by I mean across their parking lot. The only thing that separates their parking lot from the other parking lot is a parking gate. So besides across the street, this is the most convenient you can get. I should also mention that during the warm months I roll over there.

My current primary care doc takes my insurance but I'm pretty sure not mediCAID, and as I recently qualified for the buy-in and it will soon be my secondary, I'm evaluating who I see. It's part of the reason I ditched my psychiatrist. While I'm not planning on a physical for 9 mos, their incessant radio commercials have me thinking. If they don't take mediCAID and they're so closely linked to a hospital, that's pretty shitty. Their primary care/family physician website says that they accept most insurance plans including mediCARE.

I may call/email over their and check, and I also plan to check and see if they have adjustable height exam tables. My current doc does not, and I would switch just for that. It conveys a certain philosophy of inclusiveness. Besides that though, I would be picking someone blind without anybody else's experience to go off of. That anxiety about my spasticity making a doctor uncomfortable is creeping up again. I don't need to deal with someone like that. On the other hand, although I am pretty comfortable having more intimate exams with the doctor I have, I'm not comfortable with the fact that I feel my time is not respected. The article says that the hospital is in the process of switching their physicians to a salary from the current fee for service, so that hopefully won't be an issue.

If you've managed to get this far, what would YOU do? I'm really interested in opinions. And thanks Jay for the picture.

Frustrated, Or, It's My Blog and I Can Rant if I Want to

2011-07-08T08:47:00.012-04:00

I forced myself to go to bed early (10pm) last night by taking a melatonin so that I would get up early before work and fold some clean clothes. Yeah right. I've been online for the last 2hrs or so, and I've been in a bad mood. I woke up that way. My new position is an adjustment, but it's not even that. I'll definitely grow a skill set from this job. I should view it as a challenge, but this morning all I can view it as is a drag, and it's not even the job that's dragging me down.

My problem is an all to common problem for those of us who don't drive. My problem is PARATRANSIT

My problem is that I've recently expanded my world greatly beyond the <3mi I usually try to stick to, and while it's GREAT for my depression that I'm out and about and interacting with more people, it's almost not even worth it to me. Notice I said almost

Because I can't drive:

my 1hr shrink appointments, 15mins away, take at minimum 3hrs, once 3hrs 45min
My first shift at work last week, a 30min drive, was just 5hrs, but took up 8+hrs of my Friday
My half hour horseback riding lessons, about 35mins away, take up at minimum 3.5hrs, but in the half dozen times I've taken paratransit out there, they once dropped me off 50mins after the time I said I need to be there (always 30mins early, I'm not stupid), took forever to get me home, and the whole ordeal lasted probably 4.5 or 5hrs. I'm lucky that the guy who dropped me off had his dinner break in between, was actually assigned to take me home, and decided he'd just sit their and wait for me. Otherwise, I can't imagine.
The only place I can get to in a reasonable amount of time is my new psychiatrist. A 40min roll in the warm months will only take me 60mins with paratransit in the cold months. BTW, her office is about 2.5mi away.

So forget paratransit altogether.

A trip to the grocery store, a <5min drive, is a 20min roll each way
A trip to my PT/Massage therapist (2 different people, same location) is a 15min drive, but takes 2 buses and I try to be at the 1st bus stop (directly outside my door, great apartment score!) 60 or 45mins (cuttin it close) early
That 2.5mi, 40min roll to my psychiatrist mentioned above, I'm sure that doesn't take more than 10mins in a car.

I know I'm not the first, and certainly not the last, but I've still had it up to here! [picture my left hand way above my head]

PS. Unfortunately I don't seem to qualify for state run programs that help cover the cost of PA services (the state does pay for PAs to drive people places) because I'm not at risk of institutional placement if they don't.

On Mindfulness: How to Exercise with Spastic Legs, Post 1 of Many

2011-07-07T16:38:00.013-04:00

I think I'm going to start a series, "How to Exercise with Spastic Legs", but I don't own a camera, it requires pictures of me, and even if I did own a camera I can't take pictures of myself. People I know IRL read this blog. Anyone volunteer?

Today I went to the gym for the first time in so long I don't want to mention it. What precipitated this unusual event? I think my dosage of one of my meds is now too high and I'm a bit worried that it'll take me in a direction I don't want to go. I've been telling my shrink for 4 years that if I just got myself back on a horse (and found a massage therapist and an acupuncturist, and went to the gym) I could take myself off them. Then I realized that's probably dangerous, but feeling like I need to lower my dosage wasn't unexpected.

horse ✓

massages ✓

gym ✓

acupuncturist, not so much

Anyway, horseback riding precipitated my general desire to get back into shape even if it didn't get me physically to the gym.

The point of this post though isn't that I went to the gym for about 50 minutes today, but that I went in there with an entirely different mindset then I ever have in the 10 years I've been gyming on and off. I started physical therapy 2 weeks ago for the first time in about 4 years I think, a referral I got from a close friend (so why did I find myself in a gym? My goal is to exercise 30-60mins 7 days a week, as opposed to the 2-3hrs 2x a week I used to do) and I think it's this PT that used to tell my friend to "respect the pain." I used to take long gym breaks and then go back to my exact same workout I was doing before, thinking that lower weight or lower speeds would be ok. Except I always ended up pulling muscles in my legs several gym sessions in a row.

This time I decided to "respect the pain," and not do anything potentially dangerous. I stayed off the weights. I only biked for 5mins, I stayed on the tredmill for just 5mins, backwards (a GREAT exercise that works your abs, adductors, glutes, hamstrings, gastrocs, upper arm muscles, and every muscle in your back) and did a modified floor routine: 75 crunches, 20 "girl" push ups, 15 hip bridges, and 30 of my shoulder stretches.

And to my surprise I ended up practicing mindfulness. Mindfulness has been big in psychotherapy for at least the last decade. It's what the picture (right, isn't it odd that I found a picture with a horse) says it is: "Being still, becoming aware, living fully in the present moment." Mindfulness is big in eating disorder and anxiety treatment, among other things, although it's not something I've ever delved into in therapy, despite my anxiety issues. Either it isn't my therapist's "thing," or she caught on rightfully that it isn't my thing. I shy away from anything new agey.

If you want to learn about my particular subset of mindfulness, Body Sense, or Embodied Self-Awareness, check out this post from Psychology Today. Today when my abs felt the tinyist bit sore (a 0.5 on a pain scale) I stopped what I was doing at the end of that set, put both hands on my stomach, and took 10 deep breaths in and out, counting them and focusing on what my breath felt like. Then I kept going.

I'm focusing intensely on my adductors and my abs, so after my hip bridges, I laid flat on my back on the floor (I was already down there, so why not), my body aligned completely straight with my legs hip width apart, put my hands on my hip bones, which I wasn't even able to feel until I was 13, and concentrated on how my back felt against the wood floor and the 0.5 degree of pain in my right adductor, and I just breathed. I may start taking baclofen before my workouts. It's always been the tightest muscle in my entire body and if just that little bit of a stretch causes any degree of discomfort I don't want to risk going further and doing damage.

Mindfulness was an unexpected change, and something I hope to be able to continue, although people sometimes get concerned if you're lying on the floor at the gym. As someone with spastic CP, I typically spend all day "scrunched up." I'm sitting in my powerchair right now hunched over slightly, I tend to end up sleeping with my legs crossed, I stand crooked with my legs bent at the knees. For the last half of my life since my hip flexor surgery and my subsequent back issues I've tried to spend a few minutes at night in bed laying on my stomach. I figure your body wasn't designed to be scrunched all day long and it's the least I can do for myself.

But this was different, besides the fact that I was able to fight the urge to cross my ankles. This centered me, and I owe it all to Bentley (the horse). It's something I'd recommend to all the spastics out there, even if you can't completely unscruntch yourself. Start a little at a time :)

"Freedom is the oxygen of the soul" ~Moshe Dayan

2011-07-04T11:26:00.008-04:00

I picked up my apartment building's July newsletter and discovered they had another column of Freedom Quotes this year as well. The quote above inspired this repost, originally from May 2010.

On Wednesday at OOO someone mentioned that they had seen this documentary on public television where someone interviewed people of various backgrounds about their personal definitions of freedom. I don't remember if they were famous people or not, although I imagine they weren't, or if they were from different countries or not, although I imagine they were. Anyone see this thing? All I remember from Wednesday night (I'm depressed, remember) is that this documentary made quite an impression on my friend, and she in turn made quite an impression on me. Nevermind I can't remember a single word she said.

I knew instantly what my definition of freedom is, although I did not bring it up because I would have gone off on a thing. Quite frankly, I can't remember a word I said either... Anyway, I'm choosing to share it here.

Freedom is...

The wind blowing through my hair.

[FYI this picture, left, is from this past June in Chicago at AYS, not from DC, but see, wind in my hair :D]

Freedom is the ability to get into my chair and GO! Whenever and wherever I feel like. Freedom is the ability to turn up my ipod so loud I'm going to lose hearing (an acceptable consequence) and the ability to sing at the top of my lungs while I'm whipping top speed down the sidewalk towards my destination. I've had my Jazzy for 7 years and I have never and will never lose that joy that comes with passing other people by, and the joy of how good it feels to create your own wind on a gorgeous spring day (we've had a lot of those lately).

I was going to write a Thankful Thursday a few weeks ago, because it was on a Thursday during that time where I was still barely "functionally non-functional" that I woke up super early and anxious and decided that I just wasn't going to school, because I just didn't want to. It took 2.5hrs and 3.5 episodes of Grey's Anatomy for me to be able to drum up enough sheer willpower to drag my butt out of bed, put some clothes on, and still get to class in plenty of time.

I remember I rolled just outside my building (I live about 1mi from school, or a 12-15min roll) and stopped to detangle my headphones and set myself up, as I always do, either just outside or in the lobby, flipped down my sunglasses, and TOOK OFF down the driveway. I'm not even sure I was all the way down the driveway when I smiled and thought

"Thank g-d for ipods. And thank g-d for old Grey's Anatomy DVDs (THAT was really what it took to be able to get to the point where I could reason myself out of bed). And thank g-d for my Jazzy, my freedom, my ability to get around."

I often think about -- especially on bright and sunny days -- the fact that in Maryland, Medicaid will not pay for a powerchair if you are in a nursing facility. 'Cause, you know, where are you going? If you're leaving on an HCBS waiver, they have this thing about not delivering it to you until the moment you're discharged. G-d forbid something goes awry and you're still there, can't have that.

I think about this because there are a ridiculous amount of nursing facilities surrounding me, one as close as 2 blocks, and I think about how every time I rolled into one, people would eye my chair and want to know how I got such a beautiful thing. Doesn't matter how much dirt is caked on, or how many scratches and dents there are (it's well worn). When I said I have private insurance the whole group would look forlorn.

So lately I think about this everyday, because everyday lately I've spent several hours willing myself out of bed, but everyday, eventually, I put on my headphones, flip down my sunglasses, and roll down the sidewalk to somewhere. I think about the freedom I have to roll down the street, and about how great it feels to have the wind blow through my hair, and I long for a time when people don't have to fight so hard to have these feelings too.

A Picture Says 1000 Words

2011-06-25T14:49:00.000-04:00

A picture says 1000 words, doesn't it? I pulled this picture [left] out because, actually, I noticed it on my living room floor and said "I need to show this to so-and-so." It was taken of me and Pro (the horse) back in 1997. I was 12. It is one of my favorite pictures of myself.

A few years ago I came across this picture when I was in a depressive state and brought it to my shrink. I told her I saw it and thought longingly of when I was 12. And then I thought, "What am I talking about? I hated being 12. I didn't have any friends. And who likes being 12 anyway?" But at least I had Friday afternoons to look forward to. At least on Friday afternoons I felt like that. "Why can't I feel like that?"

Since I've started riding again I've also started physical therapy again. And picked up a massage therapist along the way. Riding always hurt, but this was unreal. I've really let myself go over the last 2-3 years. I've never fully regretted this decision, my slow decline in physical mobility was brought on by an increase in independence. I think only wheelchair users can fully understand this.

Except that if someone had put it as simply as "all that sitting on your butt you're doing, and all that laying in bed you're doing because you're keeping yourself depressed [I believe that a person can't make themselves depressed, but by not using strategies you know work, you can most certainly keep yourself depressed] you're shortening your already shortened muscles so much that eventually you'll never be able to ride a horse again," I might have thought differently. I think I caught it just in time. I don't care if I can walk, I'm so over that, but I do care if I can ride a horse.

Someone asked me recently why I'm putting myself through all of this. If I'm in as much pain as I say I'm in why don't I just not go. Because I don't know the last time I felt like this.

Next White House Disability Call

2011-06-24T20:44:00.001-04:00

In order to keep you more informed, the White House is hosting monthly calls to provide updates on various disability issues, as well as to introduce you to the individuals who work on these issues in the federal government. This month’s call will feature:

Dr. Jill Biden, who is leading a Presidential delegation to the Special Olympics World Summer Games and will be joining the call from Athens, Greece
Commissioner of Rehabilitation Services Administration Lynnae Ruttledge
Commissioner of the Administration on Developmental Disabilities Sharon Lewis

The next call will take place on Monday, June 27 at 10:30 AM Eastern Time.

Dial in for listeners: (800) 230-1951

Title: White House Disability Call (use instead of code)

Please call in at least five minutes prior to the start of the call. For live captioning during the call, visit http://www.fedrcc.us//Enter.aspx?EventID=1782221&CustomerID=321.

This call is off the record and not for press purposes.

If you would like to be added to the White House Disability Group email distribution list, please visit the White House website at http://www.whitehouse.gov/disability-issues-contact and fill out the Contact Us form in the Disabilities section, or you can email them at disability@who.eop.gov. Please provide your full name, city, state and organization.

For those interested, you can read about the travels of the delegation at the Special Olympics World Summer Games through Twitter updates from Special Assistant to the President for Disability Policy Kareem Dale. Simply follow @disabilitygov (http://twitter.com/disabilitygov). Updates will start on Thursday, June 24 in the evening and last through Tuesday, June 28

BACK TO THE BLOGOSPHERE!

2011-05-26T15:07:00.005-04:00

Wondering where I've been all these months? Without internet access. I don't pay for internet access as I am on a limited budget and, when there are places to go to use internet for free and be around people (B&N or the new CIL for example), why spend money to blog in a drafty apartment all alone? Except my chair broke in Feb and I lost my ability to be independently mobile and blogging became too much of a hassle and a chore. Then I was just too out of the habit. Catching up now... Look below for posts dated March, April & May that really were written May and June. "I should have been blogging about..."

Next White House Disability Call

2011-05-19T20:28:00.000-04:00

In order to help keep you more informed, the White House is hosting monthly calls to provide updates on various disability issues, as well as to introduce you to the individuals who work on disability issues in the federal government. This month’s call will feature:

Secretary of Transportation Ray LaHood
Department of Education Assistant Secretary for Civil Rights Russlynn Ali
Department of Labor Director of Federal Contract Compliance Programs Patricia Shiu

The call will also include updates on civil rights, health care and fiscal/budget issues.

The next call will take place on Thursday, May 26 at 3:00 PM Eastern Time.

Dial in for listeners: United States: (800) 230-1085

Title: White House Disability Call (use instead of code)

Please call in at least five minutes prior to the start of the call. For live captioning during the call, visit http://www.fedrcc.us//Enter.aspx?EventID=1745291&CustomerID=321.

This call is off the record and not for press purposes.

I Should Have Been Posting My Last Freedom Friday

2011-04-29T20:08:00.002-04:00

Those who deny freedom to others deserve it not for themselves ~Abraham Lincoln

Please consider donating to the 6th Annual Fun*Run for Disability Rights. It's May 1st at Upper Senate Park in Washington DC, the first day of the spring action. Even if it is just $2, all of Maryland ADAPT will be forever grateful. Your money is tax deductible and is split 50/50 between Maryland and National ADAPT.

What does National ADAPT use the money for? Legal fees, hotel rooms, lunch during national actions, copying, bull horns etc. What does Maryland ADAPT use the money for? Pizza and soda, hotel rooms, lots and lots of stamps (surprisingly in 2011 we do a lot of snail mail). If we get enough $ we can apply for federal 501c3 status. The fee is STEEP!

Thanks in advance!

April White House Disability Call (no topic released)

2011-04-25T20:03:00.001-04:00

In order to help keep you more informed, the White House is hosting monthly calls to provide updates on various disability issues, as well as to introduce individuals who work on disability issues in the federal government.

The next call will take place on Thursday, April 28 at 2:00 PM Eastern.

Dial in for listeners: United States: (888) 428-4479

Title: White House Disability Call (use instead of code)

Please call in at least five minutes prior to the start of the call.

For live captioning during the call, visit http://www.fedrcc.us//Enter.aspx?EventID=1745291&CustomerID=321.

This call is off the record and not for press purposes.

I Should Have Been Blogging About Freedom Fridays

2011-04-22T19:54:00.005-04:00

In this possibly terminal phase of human existence, democracy and freedom are more than just ideals to be valued--they may be essential to survival ~Norm Chomsky

Thanks in advance!

[If you know me IRL you know I of course have to post a photo of PONIES!]

I Should Have Been Posting Our Freedom Flyer

2011-04-18T12:00:00.003-04:00

Pages 2 and 3 are reversed. Look out for our August edition!
Freedom Flyer 4-11

I Should Have Been Blogging About Freedom Fridays

2011-04-15T19:41:00.002-04:00

You can only protect your liberties in this world by protecting the other man's freedom. You can only be free if I am free. ~Clarence Darrow

Thanks in advance.

A Quick Wordless Wednesday

2011-04-13T18:56:00.004-04:00

Still EXHAUSTED from work, so here's a quick photo post. For some reason my brother wanted me to have a birthday cake at his wedding, so here's the 3elove cake my mom and I designed, complete with handcuffs!

WHAT A WEEK!

2011-04-09T18:44:00.000-04:00

My brother got married on Sun, I had a 3 days worth of work trainings the last week in March, I started my work training program Mon, my 26th birthday was Tues & I practically slept through it, I started horseback riding Thurs, and I am EXHAUSTED! So for lack of the ability to write anything, here's a video from the wedding:

My brother's wife is Japanese, her parents don't speak english, and all of a sudden he walks up to the balcony during the last song and takes over! Jason & Megumi unfortunately only caught the last few seconds as they were taking pictures on the moon bounce...

I Should Have Been Blogging About Freedom Fridays

2011-04-08T19:29:00.001-04:00

Freedom is, first of all, the chance to formulate the available choices, to argue over them -- and the opportunity to choose. ~C. Wright Mills

Thanks in advance!

I Should Have Been Blogging a True Story Tuesday

2011-04-05T22:04:00.006-04:00

Click on the picture to see the others

In honor of the fact that I have my 1st horseback riding lesson in 2 days, a horsey story:

When I was 5, almost 6, I had my 1st major surgery. I was in a camouflage body cast, as it was 1991, 1st gulf war era, and I can't remember if I ever mentioned that my brother and I were into playing army with our grandpa, who was a WWII vet. But that's neither here nor there.

This story comes after my surgery, when I did a crazy amount of rehab. 12hrs of PT per week, plus my regular hrs of OT & ST. My adductors (inner thigh muscles) have always been and will always be a major area of concern (I'm trying SO HARD not to cross my legs while I am writing this), so I think it was my main PT, but who knows at this point (I was working with 5) who decided to leave this foamish bolster thing (shown right, but without the chain on the end) that she just wanted me to sit on while I was watching TV. Just so I'd get some kind of passive stretch.

But I would have none of it. They wanted me to do more?!?! If I was a little older at the time I would have said,

"HELL NO! LEAVE ME ALONE AND GET THAT DAMN THING AWAY FROM ME!"

Or something like that. Nevermind my parents pleaded with me and tried to reason with me, telling me that she just wanted me to practice so that when my trainer was back in town and my Dr said I could go riding again, I could go riding again. They tried to convince me that if I didn't sit on the thing I wouldn't be able to get on a pony at all. I was just too smart to fall for that.

In desperation my parents tracked my trainer down and called her at her winter house in Florida. They asked if they could drive over to the barn and borrow my saddle until lessons started up again in the spring. Would she let someone know they were coming by? My grandpa, who became an engineer after his stint in the army and loved to build things, came down from New Jersey and built me a sawhorse. If you don't know what a sawhorse is, they look pretty much like the picture to the left. My saddle was perched on top, and somewhere in my parents' basement there are pictures of me sitting on it in the living room watching TV with a big smile on my face.

While I only vaguely remember this, I do remember the excitement of having my saddle in my house! *Squeal of joy* My parents had decided to surprise me! I also remember the first time I got back to the barn that spring, and before I was allowed to get near a pony my trainer made me prove to her that I would in fact be able to get on, and then made a huge deal out of it!

[OK, just noticed all of my TST posts have to do with surgery. There's something wrong with that]

I Should Have Been Blogging About Freedom Fridays

2011-04-01T19:12:00.003-04:00

There is no such thing as a little freedom. Either you are all free, or you are not free. ~Walter Cronkite

Thanks in advance!

[photo credit Tom Olin]

I Should Have Been Blogging About Child Life Month

2011-03-29T13:51:00.000-04:00

Did you ever think you could cook while you were hooked up to dialysis? And why don't they do this with adults too? Everyone needs help it seems, learning a "kidney diet."

Click on the CL Month tag below to see all the videos from this and last year.

I Should Have Been Blogging About Freedom Fridays

2011-03-25T16:10:00.002-04:00

Here's some food for thought

Well, if crime fighters fight crime and fire fighters fight fires, what do freedom fighters fight? They never mention that part to us do they? ~George Carlin

Thanks in advance. You can donate til June!

Next White House Disability Call

2011-03-23T12:09:00.001-04:00

The next call will be held on Thursday, March 31 at 5:00 PM Eastern Time. It will feature remarks from U.S. Secretary of Education Arne Duncan, and include introductions to other Obama Administration personnel.

Details for the call are as follows:

Dial in for listeners: United States: (800) 230-1059

Title: White House Disability Call (use instead of code)

For live captioning during the call, go to

http://www.fedrcc.us//Enter.aspx?EventID=1734047&CustomerID=321.

Those interested in participating in the call are encouraged to call in at least five minutes prior to its start. This call is off the record and not for press purposes.

If you would like to be added to the White House Disability Group email distribution list, please email sfeuerstein@who.eop.gov and provide your name, email address, city, state and organization (if applicable).

Please let others know about this call so that they may participate.

I Should Have Been Blogging About Child Life Month

2011-03-22T16:24:00.004-04:00

Child Life Specialists discuss CaringBridge. Click on the CL Month tag below to see all the videos from this and last year.

I Should Have Been Posting An Update on Finding a PA

2011-03-19T10:44:00.004-04:00

It has been 3 weeks since there has been an update, and in that time, NOTHING has happened. I still don't have anyone. When I discussed the idea of classified ads with my mom, she thought it was a good idea, but when I told her how much they'd cost (you run them more then once of course) she kind of blew me off, told me she'd get back to me later, and I'm still waiting. I could just do it, I'm 26 years old (practically, 2.5 weeks away!), I don't need mommy's permission to decide if I think it's safe or not, but it's a $$$ thing.

In other news, a guy from my support group has offered to drive me for free. So I guess I can't say nothing happened. I'm inclined to take him up on it, but on the other hand I don't really know him all that well. He's just started coming. Yes, I know if I hire someone from an ad I place I won't know them at all, but that is clearly a business relationship. This, I am not so sure. He says he's not in school at the moment (he's college age), and not working, and bored, but I think he has a thing for me. When I discussed this with one of the group facilitators, whom I have known almost 2 years, he said that he thought he was just being nice, and is bored, and he doesn't think he has a thing for me. I should do what I feel comfortable doing.

It'll certainly save me the classifieds fees, although I won't allow him to drive me for free. It's aprox 40mi round trip and I assume 2.5-3hrs of his time and gas is well over $3/gal

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

I Should Have Been Posting This Video

2011-03-17T16:12:00.000-04:00

Yes, that's ME! Why do my eyes keep darting around? And where can I get that photo of me at 3:07? Self-centered tangent, I know, but what a GREAT profile pic that would be...

This video was recorded outside the Baltimore City Public Schools headquarters at a pro-Wisconsin MoveOn rally. I went because I told a friend I didn't want to schlep down there, but I'd go if she went. She said she'd only schlep down there if I went. She canceled on me at the last minute, when it was too late to change my paratransit ride. A frustrating day, but worth it I guess, now that I've seen this.

There was a guy off to the side interviewing people after it was over, and since I've joined ADAPT I can't pass by a camera and pass up a chance to spread our message (sounds like I'm a missionary, doesn't it? That's not how I mean it). So I rolled over and this guy asked me one simple question. "Why are you here?" It turned into this.

Two things that bug me: 1) I call ADAPT a "cross disability rights coalition." I meant to say organization, but I used to belong to a Maryland statewide group, the Cross Disability Rights Coalition, so I say "cross disability rights" and my brain goes straight to coalition automatically. Oh well.

2) I keep talking about "taking money away from vulnerable individuals." Really? PWDs are vulnerable? Don't call ME vulnerable. I can't believe I spread such ableism. Please forgive me. I was thinking on my feet (so to speak, I was sitting, haha), but there had to have been a better way to explain the urgency of getting the bill passed.

Overall though, I think I did a great job.

I Should Have Been Blogging About Child Life Month

2011-03-16T16:04:00.000-04:00

Here's one about yoga. Click on the CL Month tag below to see all the videos from this and last year.

This Has Nothing to do With This Blog

2011-03-14T10:11:00.000-04:00

I got it in a chain email, and I thought it was important, especially since I'm going to be traveling more as part of ADAPT

You arrive at your hotel and check in at the front desk. When checking in, you give the front desk your credit card (for all the charges for your room). You get to your room and settle in.

Someone calls the front desk and asked for (example) Room 620 (which happens to be your room). Your phone rings in your room. You answer and the person on the other end says the following, 'This is the front desk. When checking in, we came cross a problem with your charge card information. Please re-read me your credit card number and verify the last 3 digits numbers at the reverse side of your charge card.'

Not thinking anything you might give this person your information, since the call seems to come from the front desk. But actually, it is a scam of someone calling from outside the hotel/front desk.They ask for a random room number. Then, ask you for credit card information and address information. Sounding so professional that you do think you are talking to the front desk.

If you ever encounter this problem on your vacation, tell the caller that you will be down at the front desk to clear up any problems... Then, go to the front desk and ask if there was a problem. If there was none, inform the manager of the hotel that someone called to scam you of your credit card information acting like a front desk employee.

This was sent by someone who has been duped........and is still clearing up the mess....

P.S. Please everyone, help spread the word by forwarding this email to everyone you know.. Who knows, you might just help someone avoid a nasty experience.

ANYONE travelling should be aware of this one!

What NOT to Blog About

2011-03-13T11:03:00.001-04:00

If I was writing the blog post I've been dying to write, it'd be titled "The Benefits of Masturbation." And it'd be a very candid post, because there are several IMHO. But I won't ever be writing that post. I can't ever write that post, however much I'm dying to do so. Potential employers might read this blog and that's just too personal. As hard as I've tried not to mention my last name (ever), if you google me, you'll find it. You might say "but you write about sex a decent amount of time." Which is true, but I don't write about my sex life (because it's non-existent), but rather if you notice my posts are more about relationship dynamics as a person with a physical disability. I'm kissing the "appropriate" line (pun intended), but masturbation is crossing it.

However, I'm hoping this post might generate many comments and we can start an honest conversation without me revealing too much. Or someone might let me guest post on their blog completely anonymously. I can't wait to see what comes up, and I can't wait to see what google search terms lead people to this post.

I Should Have Been Blogging About Freedom Fridays

2011-03-11T15:32:00.003-05:00

My apartment building gives out cheesy prefabricated newsletters at the beginning of every month and since we're in America and our independence day is in July the newsletter from last July had a whole bunch of quotes about freedom. That'd be great to try to solicit Fun*Run donations, I thought. So here is the first of several weeks worth of Freedom Friday quotes.

The secret of happiness is freedom. The secret to freedom is courage. ~Thucydides

Thanks in advance. You can donate til June!

I'm Leading a Walking Group!

2011-03-10T18:57:00.003-05:00

We had a staff meeting on Wednesday for my branch of OOO and it was decided that we're finally going to be doing something about the expressed need for some more structured activities instead of just free time before our support group. OOO operates what are classified as "Wellness & Recovery Centers," so we were all thinking along the lines of "Wellness" type activities. Somehow we had no idea that OOO Inc has a wellness initiative now. I guess great minds think alike, or some such thing. So for example, now the 2nd Friday of every month someone is going to be leading meditation.

In the course of conversation I reminded people of the idea someone had expressed over a year ago about starting a walking group. Although that person had expressed the idea of getting a group together outside of center hours, now that it'll be light out, why don't we get a group together and go on a half hour walk before group on Wednesdays and walk around the grounds of the hospital? "I'LL LEAD IT!" I said.

I did this for several reasons:

As a substitute facilitator I get paid rather sporadically, and working even just 1/2hr per week regularly might possibly qualify me for benefits I wouldn't otherwise.
My Dr (physiatrist) wants me walking 20mins daily and even after my chair broke I still don't. I get paid a whopping $8/hr and somehow the $4/week for the half hr walk is motivation.
I did it for the gimmick of it. You'll see to the right a picture taken of me in 2007 in Israel wearing sunglasses, a hooded sweatshirt, ID badge, with my crutches. You don't usually think of someone who looks like that leading a walking group. I figured it'd get more people involved. You can't really say it's too strenuous for you. I loved the look on someone's face yesterday "You're leading the walking group???"

Someone else asked me if I'd be walking or taking my chair. I answered "It's a walking group." Seeing as I'm both leading and walking, people are going to be "keeping up" with my CP walking pace. I have a feeling no one else will be getting exercise but me. I'll be hyperventilating by the end, as I tend to do, and they'll be feeling like snails. But it meets my selfish goals.

Therese Weisbrot of Sloan Kettering Mentions Stress Induced Regression

2011-03-08T12:36:00.000-05:00

Also found through the Child Life Council Facebook Page. Click on the CL Month tag below to see all the videos from this and last year

"Left Out in the Cold" Press Release

2011-03-07T15:36:00.000-05:00

On the eve of the second reading of the government’s controversial Welfare Reform Bill, on 9 March, disabled activist Kaliya Franklin stripped off to demonstrate what the result would be for disabled people across the UK if disability benefits are slashed to the bare minimum.

The photo shoot depicts a naked Franklin lying on the sand on a wintry beach, next to her empty wheelchair.

“I was absolutely frozen when I took my clothes off for the photo shoot,” says Franklin, “but it was nothing like as cold I and other disabled people will be if the government removes our essential benefits.”

The Left Out In The Cold awareness-raising campaign is being organised by disability rights group The Broken of Britain, of which Franklin is a founder and director.

Says Franklin, “It’s vital that every able-bodied person remembers they are just an accident or illness away from being disabled themselves. Many people think if they do become disabled that the state will look after them.

“But the fact is that even under current provisions, disability benefits are not enough for disabled people to live on. If the Welfare Reform Bill is passed, the situation will become unimaginably worse.”

In January, Franklin released a video on YouTube that explained how able-bodied people would be in for a major shock if they found themselves needing to apply for disability benefits. The video can be seen at http://www.youtube.com/watch?v=q7EXSpmrVMU.

The Broken of Britain group has been campaigning since summer 2010 to raise awareness of the government’s wider anti-disability policies. The group has consistently drawn attention to disabled people being the target of unjust government rhetoric and sham consultations, tabloid slander and political myths.

It says: “We are now the targets of deep and damaging cuts to disability services that are contained in and symbolised by the Welfare Reform Bill. The Bill disguises cuts and changes to a number of benefits, from housing benefit to Income Support that will punish disabled people.”

Notes for editors

1. Kaliya Franklin and other case studies are available for interview.

2. A high resolution version of the campaign photograph is available on request.

3. For more information, contact Rhydian Fôn James at rhydian@thebrokenofbritain.org or 07774021785, or Kaliya Franklin at 07714208602

4. Contribution-related Employment Support Allowance will be restricted to 365 days, meaning that a married claimant would be unable to claim after a year if their spouse works.

5. The Welfare Reform Bill confirms that Disability Living Allowance will be replaced by the Personal Independence Payment which will use unfair assessment and conditions to disqualify 20 per cent of the current DLA caseload.

There is no evidence that supports government’s claims that DLA is “broken” and in need of reform. In fact, most evidence suggests that DLA is an efficient and popular benefit, and this support includes the vast majority of the DWP’s own research.

The inclusion of this benefit change in the Welfare Reform Bill took place before the consultation on DLA reform was completed.

6. Other cuts to disability services not included in the Welfare Reform Bill are:

• Plans to remove security of tenure from social housing tenants, as costly adaptations are a barrier to moving regardless of size of property.

• Many changes to the provision, entitlement to and charges paid for receiving social care and disability services provided by local authorities.

• The Independent Living Fund which provided for the highest level support needs in combination with the local authorities is now to be scrapped without consultation.

• Access to Work reform redefines what it is "reasonable" to expect an employer to provide for disabled staff, meaning it is likely to push many currently employed disabled people out of work and back onto benefits.

7. Disabled people are more likely to live in poverty than any other group in the UK and more likely to be unemployed or in low paid jobs. 60% of those with a work-limiting disability are unemployed, with 25% wanting to work.

Left Out In The Cold by Kaliya Franklin is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 3.0 Unported License.

Permissions beyond the scope of this license may be available at http://thebrokenofbritain.blogspot.com/

Took this straight from Emma's blog. Hope you don't mind!

I'm Disappointed in You Sen Cardin

2011-03-05T16:54:00.003-05:00

On Monday I went with 2 other Maryland ADAPTers to a local Senior Center because Sen Cardin, one of Maryland's 2 federal senators, was doing a town hall on health reform. I waited to write about this because I thought, and was told by a member of the County Executive's staff, that full footage of the hr would be available here. Apparently not. Now this post will be briefer then originally intended because it's been so long I can't remember exactly what everyone said.

Basically, Sen Cardin spent most of his time talking about the budget and the fact that the government is about to shut down (see yesterday's post, they're still trying to pass this year's budget and if it doesn't pass soon the whole government will shut down) and how disastrous this will be to seniors. But he did talk some about the health reform. Not at all about long term care, of course, so when my turn to ask a question finally came I stood up in an ADAPT shirt and said

"Can you please talk about efforts to reduce the Medicaid institutional bias so that seniors and people with disabilities, such as myself, can remain in their own homes."

I'm disappointed in you Sen Cardin. I phrased my question in such a way as to make him, and Maryland, look good. I didn't attack him for not supporting the Community Choice Act, but left it open for him to talk about programs such as Money Follows the Person (MFP) and the Community First Choice Option (CFCO, formerly the CLASS Act).

What he basically said was that Medicaid is operated by the states and states can choose to operate home based programs if they want to. What he should have done was talk about the recent expansion of MFP to include 13 more states (now I think we're at 42, correct me if I'm wrong) and the fact that Maryland is an original MFP state. He could have explained what the CFCO is. Maryland has money in next year's budget to explore whether we want to be a CFCO state. Instead he said this isn't a federal issue.

The federal government mandates that they won't help states cover their Medicaid costs unless they cover institutional care. Community services are optional. Community services have been cut every year while in Maryland, nursing facility rates have gone up about 6.6%. It's similar in every state. Making a bigger federal push for home & community based services would change that situation.

This IS a federal issue Sen Cardin.

Deficit Reduction on the Backs of the Most Vulnerable

2011-03-04T16:50:00.000-05:00

originally from http://www.americanprogressaction.org/issues/2011/03/pdf/hit_budget_cuts.pdf
hit_budget_cuts

It's CHILD LIFE MONTH

2011-03-02T15:40:00.000-05:00

I didn't think I was going to do video segments again this year, but then I "liked" the Child Life Council on facebook back in December and found this GREAT video

Visit msnbc.com for breaking news, world news, and news about the economy

Click on the CL Month tag below to see all the videos from last year.

My National Pancake Day Experiance

2011-03-01T17:15:00.013-05:00

Totally unrelated to this post, Emma says it's the International Day of the wheelchair today. If I had it in me I'd write the post I've been meaning to write for the last 2 weeks since my Jazzy broke, but I don't, so that'll have to wait for another day. However, if any readers know of other "International Day of the Wheelchair" posts, please leave links in my comments.

Last year I wrote about how I've always wanted to go to National Pancake Day (NPD) and never make it. Today I'm writing to say that I went today, and I'm totally dissatisfied. First of all the IHOP my friends chose to go to was rather drabby and a could use a fresh coat of paint. It was also chaotic (to be expected) and the acoustics were bad, so it was hard to hear the people at the other end of my table, and there were only 5 of us! It didn't make for a relaxing experience.

What I'm most dissatisfied with is that I have no idea where my donation went, or even if my donation went anywhere at all. My friend commented that maybe they're pocketing it all. I replied "Maybe they are." I wouldn't be surprised. Ok, so I only donated $1.14 in change -- I am low income after all -- but every little bit helps and I hope my $ goes somewhere. Nowhere in the restaurant was there clear signage as to where the money was going. The National Pancake Day website says the $ goes to the Children's Miracle Network (a charity close to my heart) or other local designated charity. In the DC area the $ goes to the Leukemia & Lymphoma Society (LLS) (another charity close to my heart), but I of course am in Baltimore.

All the materials in my restaurant said something like "Make a miracle for a child by donating to your local charity," but nowhere did it say what that charity was. When the waitress came by she asked us if we were there for the free pancakes but never mentioned a word about making a donation. The giant cardboard donation box had a sign taped on it that said "MAKE A WISH," which then had me looking quizzically. Do they want me to wish on my donation or is the money going to the Make a Wish Foundation?

Seeing this look on my face the hostess said "The money is going to BREAST cancer." [emphasis mine] Which only leads me to believe that the hostess is illiterate, and that the $ is in fact going to LLS. You see taped to a window all disheveled like and strewn all over the floor were these paper signs that said "BEAT cancer" [emphasis mine] on the top with the LLS logo on the bottom and ample space in the middle to write your name that you had donated.

"BEAT" looks an awful lot like "BrEAsT" doesn't it?

I wish they were more organized. I wish I knew where my $ was going. I won't be going back to that IHOP next year. Anyone else go to NPD? How was your experience?

An Update on Finding a PA

2011-02-27T16:38:00.010-05:00

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?

ADAPT Activists Storm Wisconsin GOP Headquarters

2011-02-26T17:06:00.015-05:00

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?

Quote From Some Random Guy

2011-02-24T14:26:00.001-05:00

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?

All Chairs Look Alike (an Almost Wordless Wednesday)

2011-02-23T12:09:00.004-05:00

[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.

National Medicaid Budget Cuts News

2011-02-21T16:24:00.004-05:00

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.

UKIAH CALIFORNIA FACING DEVASTATING STATE BUDGET CUTS

RALLY IN IDAHO PROTESTS PROPOSED MEDICAID CUTS

IN NEW JERSEY, GOVERNOR CHRISTIE'S BUDGET EXPECTED TO INCLUDE MEDICAID CUTS

Becoming Proud and Powerful

2011-02-20T11:38:00.000-05:00

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.

Thinking of Starting a Mah Jongg Game

2011-02-18T17:24:00.005-05:00

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.

White House Federal Disability Budget Fact Sheet

2011-02-17T12:09:00.005-05:00

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

A Quoteable Quote From a Regular at OOO

2011-02-15T15:37:00.000-05:00

He's the KING of one liners!

I'm Hiring My First PA

2011-02-14T17:54:00.008-05:00

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?

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

2011-02-12T14:34:00.010-05:00

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 :)

Quote From DD Day

2011-02-11T13:50:00.007-05:00

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?

Since When Do They Make IPad Apps for Cats?

2011-02-09T12:45:00.001-05:00

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

PINT

2011-02-08T12:14:00.001-05:00

Thanks Georgina Dollface!

I Can't Post One Without the Other

2011-02-06T15:21:00.014-05:00

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...

On Willowbrook

2011-02-05T12:17:00.005-05:00

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!

All People Who are Bipolar are Violent

2011-02-03T15:59:00.001-05:00

[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?

Mary and Max

2011-02-02T12:19:00.002-05:00

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+

60 Minutes Story on GSK Whistleblower

2011-01-31T12:14:00.000-05:00

Questions & Answers (Eventually)

2011-01-29T12:04:00.000-05:00

This picture above [2 street signs on a pole, the one pointing to the left says questions and the one to the right says answers] from Ellen's post last month on Love that Max inspired this post. Eva and Jenni both have question and answer segments on their blogs, maybe I will too. Although I've never felt all that curious, and I assume that most of my readers have disabilities, maybe you don't. Or maybe you do and still have a question. When doing a self-advocacy training for teens/20 somethings with DD, a woman with a DD stopped me during my intro and said "I've heard all people with bipolar are violent." A valid assumption given media. So ask away in the comments and I promise to get back to you in a post sometime in the future. When I have writers block it'll give me something to write about.

Moms & Botox: What's the Deal? Or, Botox is Relatively PainLESS (and Botox Day is Like Christmas)

2011-01-27T12:01:00.002-05:00

I've been meaning to post this since October when Tanis posted about Jumbly's botox appointment. She called the post The Steel-Toed Boots of Motherhood. I read it and thought about other moms that have written about botox, like Ellen and Kathryn. All three of their children have cerebral palsy, all three write about their children's botox appointments with angst, and I wonder why. I am somewhat flummoxed. I thought I wrote a post over a year ago, Botox Day: It's Like Christmas, but apparently I never did. OK, I don't know anything about Christmas (remember, I'm Jewish), but as my appointment gets near I start counting down the days.

In her next post Tanis writes that the day of the appointment was a soul crushing day for her. In 2009 Ellen wrote about being scared for Max. I don't know why Max's doctor puts him under general anesthesia for botox, I've never heard of that. I have heard of using conscious sedation for little children, like what was done with Ellie.

Kathryn thinks that people who think botox is not painful are out of their mind [look at the picture below, it's a teeny, tiny needle]. Jenni and I must be out of our minds then. Kathryn, have you ever had botox? How do you know? She seems to think that the pain produced from a botox shot is 100x worse then a tetanus shot. No, Kathryn, it's not. Tetanus shots are worse. To me, botox shots hurt about the same or less then a flu shot.

I understand that these kids are 7 and 8, and that when I first started getting botox regularly I was 20. I did have botox a few times when I was somewhat younger and unconscious, during surgery, but doing it that way makes it hard to determine whether improvements are from botox or surgery. I also had botox once when I was 18, although hardly any, I think just in my thighs and opted for the numbing cream.

I fully support the use of numbing cream, conscious sedation, distraction like bubbles or I Spy books, or sheer bribery like ice cream, money, or a trip to the toy store for little kids. I might suggest calling in a child life specialist. Getting upwards of 8 shots is a lot for a kid to take. I would have been a wreak at 7 and 8. But for the last five years I haven't opted for anything for pain management. Botox is my pain management. It's a g-d send. I just don't have the patience for EMLA. Having to wait for paratransit to take me to/from my appointment tries my patience enough. Waiting for Emla to kick in might put me over the edge.

OK, OK, I'm being rather misleading. Botox is injected all over my body every 6 months. I get it in 8 muscles, and because they are rather large muscles my physiatrist spreads the shots out and injects more then 1 spot. Of course I feel it. Of course, just like getting blood drawn or a flu shot, my natural CP reaction is that my whole body tenses up even before the needle even hits my flesh. Try telling someone with spastic CP to relax. It ain't happening.

Fortunately, I was told by Dr Gormley, of Gillette, that in the case of botox, tensing the area actually makes it easier for the physiatrist to find / access the correct muscle. Score one for spasticity! Of course it hurts when the needle is in my flesh, but as soon as it is out there is no longer any pain. It doesn't linger. I don't walk out of the hospital in pain. There is some very minor discomfort, but as my current physiatrist suggests, going for a walk afterwards not only helps work the botox into your muscles and helps it to take effect sooner, it also makes that discomfort go away sooner. What do you do if you can't walk? I don't know. Ask your physiatrist.

I always wonder why my doctor always has this look of guilt or something on her face when she is giving me botox. I'm sure the look on my face isn't pretty. I do always utter multiple OWWWs during the appointment. But I always wonder why she doesn't focus on the tremendous amount of pain that she is saving me. Or why she doesn't focus on the giant smile that I'm sure is plastered on my face most of the times she walks into the room. She's there to give me BOTOX! I'm a botox junky. Dr. Alter is one of my favorite people. She's totally got me strung out on the stuff :-)

She should hear the way I talk to other people anticipatorily about botox, with that smile on my face. Or maybe I should tell her that in the weeks leading up to "botox day" I go to bed thinking about botox the way most Christian kids think about Santa Claus (I think I have told her that actually). I'm sure little kids getting botox don't think of it this way, but I know of at least one other person my age (coincidentally a patient of Dr. Gormley) who looks forward to it, although I'm not sure if she looks forward to it as much as I do.

So I wonder why these moms look at botox with such angst, while I look at it as somewhat joyous in a way. Yes, I am injecting diluted botulism all over my body, almost from head to toe (from shoulder to calf), and yes, I'm fully aware that botulism in it's pure form is a lethal form of food poisoning, having done a report on it 8 years ago for 11th grade chemistry class. But the pain I otherwise have, especially from panic attacks, is unbearable. Although I'd like another option, I've rationalized the food poisoning. Why can't mothers?

True Story Tuesday: "Grandpa you're a WUSS!"

2011-01-25T12:11:00.001-05:00

Click on the picture to see the others

I'm renting Breaking Bad, and I've watched the first season so far. I haven't had access to cable most of the time it's been on, so it's the first I've seen it. I don't know why I'm watching it. It's bizarre. Actually, I do. The son in the show, Walter Jr, played by RJ Mitte, has CP, and he's a real honest to g-d cripple in real life. Unfortunately, I found out from IMDB that the show has made him 'crip it up,' as I like to say. But whatever, he's still authentic, and I'm not sure you could train yourself to have a pronounced 'CP slur.' That's what impresses me the most, he's on TV and he even sounds like a cripple! I find that groundbreaking, because they don't portray him as a supercrip, he's just a 15 year old mainstreamed high school kid.

A big part of the show, from the first episode onward, is the premise that his father is diagnosed with stage 3A lung cancer. In the first 4 episodes he refuses treatment, so in the 5th the family holds an intervention. When it comes to Walter Jr's turn to speak, he says

"This is bullshit ... I'm pissed off ... I-I'm pissed off. 'Cause you're being -- You're being... Y-you're -- You're a pussy. You're, like, ready to give up ... What if you gave up on me, huh? This here [he picks up one of his crutches], all the stuff I've been through, and y-you're scared of a little chemotherapy?"

That little speech gave me a flashback. Brought me right back to when I was 8 years old and my grandfather, 67 at the time, was diagnosed with prostate cancer. They cut it out and he was fine for the next 10 years, until he died of a massive heart attack.

I remember sitting in my grandparents kitchen, his surgery had been scheduled, but I don't know how long he had before the date. It could have been the next day, it could have been scheduled for a month later. Anyway, people were talking, and he was scared. I just looked at him with the innocence only a young child could have, and stopped him right in his tracks.

"Grandpa you're a WUSS!" I shot back.

I think I was too young to know the word "pussy."

He didn't even know what the word wuss meant. Never heard it before. I was too flabbergasted at the fact that he'd never heard it before to explain to him what it meant. My mom had to.

I had already gone through my first surgery 2 or so years before. Hamstring transfers that left me in a spica cast for the following 8 weeks. [man I wish they had this cast cooler thingy 20 years ago, or even 9. It's a good pic of a spica] So many months of physical therapy. My grandpa had none of that. What's a little prostate surgery to an old man, I thought? C'mon!

I don't remember if I was scared of that first surgery or not by the time it came. My parents put me into a few months of psychotherapy before. But, if I was, by the time I was 8 I didn't remember being scared at all. Bitter still at that point, very much so at the surgeon who had lied to my face about the outcomes, but NOT scared. I was 5, you're 67. Man up!

Certainly gave him a different perspective...

LOUD, PROUD, AND PASSIONATE

2011-01-23T12:23:00.000-05:00

The Sunshine Folk Shed Light on Long-Term Care

2011-01-21T12:14:00.010-05:00

From the MD Daily Record, written by Joe Surkiewicz, published Jan 2, 2011

BALTIMORE, MD -- While most of the 25,000 residents living in Maryland’s 234 nursing homes would prefer to receive services at home, the overwhelming majority languish in institutions.

That’s largely because they don’t know their options.

But thanks to The SunShine Folk, that’s changing.

The SunShine Folk are a group of former nursing home and state institution residents who reach out to residents in nursing homes and educate them about their options for receiving long-term care at home.

The group was launched by Maryland Disability Law Center in 2005 as a collaboration between people with disabilities who provide hands-on peer support and the MDLC, which provides the legal expertise to help secure the Medicaid waiver services needed for them to live independently.

“The SunShine Folk help facility residents choose and apply for Medicaid programs and advocate for themselves in the transition process,” said Gayle Hafner, a senior attorney at MDLC. “MDLC staff work to remove legal barriers in the more difficult cases.”

This successful partnership between legal professionals and grassroots advocates has enabled hundreds of people with disabilities — including seniors and individuals with significant support needs — to fulfill their dream to move from an institution to the community and “get their lives back.”

It also makes economic sense.

“Any time it costs the state $85,000 a year to live in a nursing facility and only $40,000 a year at home, coming home is the way to go,” said Floyd Hartley, a leading member of The SunShine Folk. “I was in a nursing home for three years and never knew about waiver services until I met Gayle [Hafner]. It allowed me to come home and get the same level of care — actually, better care that is much more individualized.”

The group not only serves individual clients but also has its collective fingers on the pulse of the state’s progress in rebalancing its long-term care system away from over-reliance on facility-based care.

The SunShine Folk have gained experience, knowledge and savvy and have positioned themselves to advocate successfully for systemic reforms that help improve the lot of many people who remain stuck in institutions.

Furthermore, the program serves people who face complex legal hurdles, have intensive-care needs or face other barriers to freedom from facility-based care requiring skilled and sustained assistance.

“Experience tells us that the majority of individuals the SunShine Folk have helped to free would still be stuck in institutions, but for the program’s tenacious outreach and persistence,” said Kim Stevens, an MDLC paralegal who works closely with The SunShine Folk.

“Although most individuals prefer to receive services at home, Maryland spends about 85 percent of its Medicaid funds on institutional care,” Stevens continued. “Maryland spends only 15 percent of its Medicaid long-term care monies on home and community-based services and supports for seniors and individuals with disabilities, ranking it near the bottom among states in home-care services spending for this population.”

A federal demonstration grant, Money Follows the Person, attempted to address this imbalance. Due to the success and advocacy of the SunShine Folk, the state attempted to incorporate peer outreach contractors, program education and waiver application assistance into its MFP operational protocol.

“The sustained monitoring by The SunShine Folk clearly reveals that the state’s initiative falls far short of the intent,” said Hafner, the MDLC attorney. “Nearly 100 percent of the residents who connect with The SunShine Folk choose to initiate a waiver application, while only 30 percent of those who interact with the state’s program educators choose to do so.”

At least part of the reason is that the state’s contractors are restricted in the information they can share and are less committed to helping people find their way home.

The SunShine Folk, on the other hand, are able to respond to all of the residents’ concerns and requests for information, and support the individuals throughout the transition process.

“Just within the past few months we have made several presentations at conferences about this peer model of mentoring, and people are always asking how to replicate the model for other projects or in other states,” Hafner said.

“The SunShine Folk have been an invaluable resource, an on-the-ground eyes and ears for many advocacy groups,” she continued. “The state policymakers recognize The SunShine Folk’s real-life experiences and actually listen to them because of their knowledge, dedication, and commitment.”

The SunShine Folk keep hope alive for people during a complicated transition.
“Sometimes the social work aspect of transitioning a person with complex needs requires more resources than a legal services agency is equipped to offer,” Hafner noted. “The SunShine Folk can be the knowledgeable, one-on-one contact and mentor for someone during the entire process, from thinking about the possibility of transition, all the way through settling into a new home in the community.”

Added MDLC executive director Virginia Knowlton: “You can replicate the model, but not the passion for the work and sincere desire to help people find their way out to the community that our advocates have. This is an effective collaboration that grew organically from the ground up in response to a pressing human need.”

For information about The SunShine Folk project, call Knowlton at 410-727-6352.

Joe Surkiewicz is the director of communications at Maryland Legal Aid. His e-mail is jsurkiewicz@mdlab.org.

How I Feel About Parents Who Refuse Vaccinations

2011-01-19T11:36:00.002-05:00

I've linked to this article from Slate before

From January 3, 1967 [a 4 slide Peanuts cartoon]

Slide 1 Linus: WHY DO I HAVE TO GET A MEASLES SHOT?

Slide 2 Linus: WHO EVER WORRIES ABOUT MEASLES? WHAT'S A LITTLE "RUBEOLA" AMONG FRIENDS?

Slide 3 Lucy: YOUR STUPIDITY IS APPALLING!!!

Slide 4 Linus: MOST STUPIDITY IS!

Thanks Penny!

(Penny posted this on Facebook for an entirely different reason -- her views are not necessarily the same)

In Honor of MLK Day, Another Famous Quote

2011-01-17T12:28:00.010-05:00

Everybody can be great, because everybody can serve.
You don't have to have a college degree to serve.
You don't have to have to make your subject and your verb agree to serve.
You don't have to know about Plato and Aristotle to serve.
You don't have to know Einstein's "Theory of Relativity" to serve.
You don't have to know the Second Theory of Thermal Dynamics in Physics to serve.
You only need a heart full of grace,
a soul generated by love,
and you can be that servant.

[this picture is from Isrealli, the official blog of the State of Israel. Who knew countries had official blogs? "Israel is the only country outside of the Unites States that marks Martin Luther King Day annually"]

I am Not a Freak

2011-01-15T12:50:00.013-05:00

"Almost always, the creative dedicated minority has made the world better." ~MLK Jr

When I saw that this month's DBC was being held in conjunction with MLK Jr Day, something deep inside of me got mad. I wasn't upset that the carnival is Monday. In fact I thought that was a great idea. I don't have anything against MLK Jr at all. In fact, ADAPT has long considered his birthday (today) to be "Freedom Day." We're down with him. What angers me is why some people aren't down with us.

I don't know how people viewed Black Civil Rights leaders during the 1960's, when everything was going on. I wasn't around in the 60's, I'm 25. I imagine things were viewed differently depending on which geographic region of the country you resided in at the time. What I do know is that now, in 2011, and for at least the last 20 years, Malcom X, MLK, Nelson Mandela (yes, I know he's not American) have been regarded as national heros, while I am regarded by some people as a freak.

Please explain to me why blocking a bus with a powerchair is different then refusing to get up from the front of a bus. Please explain to me why yelling outside of an inaccessible McDonald's (that link is in Mandarin, use Google Translate) is different then refusing to get up from a lunch counter?

Did people tell MLK to just "be nice?" Not just people, but Black people. HIS people. I'm sure some did. I've been looked down upon by other PWDs, wheelchair users, been instructed to "be nice." I've gotten in arguments with certain PWDs (those old friends), who don't agree with how or why I do the things I do, so often that we no longer speak. Being nice in my experience rarely gets you what you need, your civil rights. IN YOUR FACE does.

MLK Jr said

We who in engage in nonviolent direct action are not the creators of tension. We merely bring to the surface the hidden tension that is already alive.

I'd have to agree with this. People are scared of people with disabilities. Especially people with very visible physical disabilities and significant psychiatric disabilities -- people who cannot pass. People are scared, fearful of what is different; of what they do not know. By making our very visible selves even MORE visible we are intensifying this fear. I get that. That explains why TABs get nervous around ADAPTers, but that doesn't explain why some PWDs are put off by us. We're not any more different then they are.

I think PWDs are put off by me (us) because by hanging out with people who do things such as handcuff themselves to the White House fence, I challenge their reality, how they were raised, the ways they think are the "right" ways to be a PWD. Don't call attention to your disability. Don't ask for "special" treatment. Be nicer then other people. You should be grateful for what you do get. Etc.

My parents taught me not to settle. My parents taught me separate is not equal. My parents taught me that sometimes to get what you need you have to stop being nice and start being FORCEFUL. My parents taught me this when I was 5. And my mother wonders why I'm so into ADAPT... But that's another topic and story entirely...

The theme for this carnival is "let your freak flag fly." I'm different. I'm a radical. I challenge not just the "norm" but I also challenge the "atypical." ADAPTers call ourselves "wild and weird ones." I wear that label with pride. But I'm not a "freak" in the way that people who judge me intend that word to be meant.

Why are Malcolm X, MLK Jr, and Nelson Mandela national heros but not Ed Roberts and Justin Dart Jr? We are the same. We do the same. We're not freaks. We're also a very creative dedicated minority hell bent on making the world a better place.

As a Reminder...

2011-01-14T12:33:00.006-05:00

that today is the first day of One Month Before Heartbreak, I post The 12 Days of CRIPmas

In Solidarity

First Quarterly Health Care Reform Consumer Forum Event and Community Health Fair

2011-01-12T13:36:00.003-05:00

Baltimore HealthCare Access Hosts First Quarterly Health Care Reform Consumer Forum Event and Community Health Fair

Mayor Stephanie Rawlings-Blake, Congressman C.A. "Dutch" Ruppersberger City Council President Bernard "Jack" Young, City Councilwoman Mary Pat Clarke and Baltimore City Health Commissioner Oxiris Barbot, M.D. kick off first event to "Get the Facts" on health care reform to Baltimore consumers!

WHO: Baltimore HealthCare Access, Inc. Mayor Stephanie Rawlings-Blake, C.A. "Dutch" Ruppersberger, and other local/state dignitaries

WHAT: Mayor Stephanie Rawlings-Blake, C.A. "Dutch" Ruppersberger, City Council President Bernard "Jack" Young, City Councilwoman Mary Pat Clarke, and Baltimore City Health Commissioner Oxiris Barbot, M.D. will join Baltimore Healthcare Access along with other local and state officials to launch the first in a series of events to provide the facts to Baltimore residents about health care reform. The first event, Baltimore Health Care Now and Later, will feature experts discussing health care reform in four consumer oriented forums including information sessions for seniors, small business owners, the uninsured, and underinsured. City residents will have the opportunity to find out about changes that have already taken place and get a glimpse of what to expect in the future.

Baltimore City has over 96,000 uninsured residents many of whom will qualify for new health coverage programs once health care reform is fully implemented. Some city residents already qualify for coverage through existing state programs and Baltimore HealthCare Access will offer on-site health coverage enrollment at the event. The first event, in a series of quarterly forums, will also feature a community health fair where city residents can get help now with their health care questions and see if they might qualify for existing health coverage options. There will be 40+ health vendors, free health screenings including diabetes and blood pressure, free flu shots, depression screenings, on-site health coverage enrollment, and more! Among the vendors will be the Law of Office of Fred S. London, P. C., a major event sponsor, who specializes in Medicaid eligibility, Social Security Disability, SSI (Supplemental Security Income), and other health related matters.

WHEN: Saturday, January 15, 2011

1:00 p.m. to 6:00 p.m.

WHERE: Harry and Jeanette Weinberg YMCA at 33rd Street

900 East 33rd Street

Baltimore, Maryland 21218

NUMBER THE PUBLIC CAN CALL FOR MORE INFORMATION: 410-649-0500 or www.bhca.org

MORE EVENT DETAILS: Press conference with the Mayor & other local & state representatives begins at 1:00pm. Baltimore HealthCare Access will provide health coverage eligibility & enrollment assistance on site; Baltimore Broncos players & cheerleaders; Kaiser Permanente’s Professor Bodywise's Traveling Menagerie; Healthy kid's activities; Free transportation from select sites for seniors; Wear your purple & watch the Ravens game on a big screen TV too!

It's [Inter]national Delurking Week!

2011-01-10T12:40:00.000-05:00

I think I got it wrong last year. Delurking week is the second full week of the year, not the first. If you want to participate on your own blog just google image delurking week. There are all kinds of great images to choose from besides this cat, which is so adorable I just want to take it home with me.

What is delurking week you ask? Well when you regularly read a blog or a message board but you have never posted / commented you are called a "lurker". Someone said that sounds kind of sinister, but that's what it is. Bloggers by our very nature are rather narcissistic, and we LOVE when people leave comments. Blogging to me is not one sided, it's an attempt to start a conversation. Sometimes I might even get the slightest bit depressed if I don't get as many comments from a post as I thought I would.

Delurking Week is a time when we bloggers peer pressure you to come out of the shadows and say "HELLO!" I know I've gathered a lot of public followers this past year, but I also know that most of you don't comment and that there are quite a few more of you that are regular readers and aren't public. So...

COME OUT, COME OUT WHEREVER YOU ARE!

I want to meet you, I really do. Tell me a little bit about yourself. It's the least you can do, you sure know a lot about me.

I'll also be doing a bit of delurking this week too. I'm guilty of not always commenting as well...

A New Year's Message From National ADAPT

2011-01-08T15:59:00.000-05:00

This was posted on FB Jan 1

It's that time of year where a bunch of folks make New Year's resolutions. Most resolutions are things like lose weight, work out, be on time, and procrastinate less...

So what have your representatives in Congress resolved to change in 2011? We all KNOW they will give up working out by mid-January (if it lasts that long), will gain back 10 pounds after losing five, and will continue to be late to everything. Of course, they will find a hundred reasons to put off working on that procrastination resolution. So rather than waste this opportunity, THEY SHOULD RESOLVE TO ELIMINATE THE INSTITUTIONAL BIAS!

We contacted the Congressional candidates during the election and a number of them pledged to eliminate the institutional bias, but a lot of these folks didn't. Congress is about to come back into session, se we need to make sure that they know we want them to free our people.

We've posted a Congressional New Year's Resolution you can use to ask your members of Congress to end the institutional bias. The Congressional New Year's Resolution is at: www.cdrnys.org/resolution.

We know this will be a tough Congress to work with, but there is widespread support for this issue within the disability community. Every major national disability organization supports ending the institutional bias through the Community Choice Act. There is support for it beyond the disability community as well. We have estimated that the cost of CCA to middle class folks is only about $6 a year. Giving seniors and Americans with disabilities their freedom would cost as little as a big cup of coffee. And based on a Harris survey (click to see the fact sheet), 89% of those surveyed supported the legislation.

We are working with Congress on reintroducing the legislation, but we aren't waiting to ask our Senators and Congressional representatives to sign on and support it. Please give them a call or send an email asking them to make a New Year's resolution to eliminate the institutional bias.

FREE OUR PEOPLE! -The ADAPT Community

FDA ECT Meeting (I almost missed this) & January White House Disability Call

2011-01-06T16:46:00.002-05:00

From MindFreedom International:

The US Food & Drug Administration holds a meeting about electroshock device

The US FDA announced that on January 27 and 28, 2011, a US Food & Drug Administration committee will "discuss and make recommendations regarding the possible reclassification of devices indicated for use in electroconvulsive therapy."

what Forum
when Jan 27, 2011 08:00 AM to Jan 28, 2011 06:00 PM
where Gaithersburg, MD
contact name James Engles, FDA
contact phone 301-443-0572 code 3014512513
attendees All are welcome.

US Federal Committee To Have Meeting About Electroshock Devices

Location of FDA meeting:

Hilton Washington DC North/Gaithersburg, Ballroom, 620 Perry Pkwy, Gaithersburg, MD.

More info from FDA web site:

http://www.fda.gov/AdvisoryCommittees/Calendar/ucm234979.htm

Background:
~~~~~
The FDA has appointed an advisory committee to assist it to determine if electroconvulsive therapy (also known as electroshock) devices will be moved from Class III to Class II, or as many have proposed, to require the manufacturers to submit a "Pre-Market Application" which they should have been required to do 35 years ago.

If the Committee agrees to downgrade the risk of ECT to Class II, it will be more readily available, and the manufacturers may never have be required to prove either that it is safe, nor that it is effective.

ECT survivors may briefly speak to the committee in this public meeting to provide their story or perspective on the harms caused to them by ECT.

Communication of long term harms is especially important, as the manufacturuers and ECT advocates are minimizing ECT long term ill effects - such as long term memory loss, as well as long term effect of reducing ability to learn and remember new information.

The FDA states that persons wishing to speak at this important meeting may contact James Engles at James.Engles@fda.hhs.gov. While a deadline of 14 January is listed to ask to speak, the sooner the better.

There will certainly be psychistrists and manufacturers representatives and others claiming ECT is a life saving treatment. The Committee needs to hear from people who know the true risks of electroshock.

From the Whitehouse:

In order to help keep you more informed, we are hosting 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.

This call is off the record and not for press purposes.

We strongly urge and ask that you distribute this email broadly to your networks and list serves so that anyone who wants to participate can do so.

Our next call will be Monday, January 10 at 3:00 PM Eastern.

The conference call information is below.

Dial in: (800) 230-1093

Title: Disability Call (use instead of code)

Date of Call: 01/10/2011

Start Time: 3:00 PM Eastern

For live captioning, at time of call, log onto:

http://www.fedrcc.us//Enter.aspx?EventID=1679107&CustomerID=321

Again, please distribute widely.

I Went to the Movies on Christmas

2011-01-04T12:01:00.000-05:00

[This is an old favorite, this song, and by old I mean since 2007 when it came out and went viral among us Jews. Especially us local Jews -- the shopping center it was filmed at is 20mins north of me.]

It feels like this post is up a bit late. I keep meaning to post this video on Christmas and always forget. [although apparently I linked to it once] I am laying here in bed writing this at about 11pm on Dec 24th, but there were things I wanted to get up last week, so this is posting on January 4th -- and so be it.

There's thoughts swarming around my head wanting to get out, and a shrink who isn't Jewish and thus is on vacation somewhere north of here (until today, the 4th) with her family. I hope this doesn't come out wrong and offend my best friend, but all I can think of is a previous Christmas, 2007 to be exact, the best Christmas I ever had. A Christmas filled with my old friends, whom I haven't talked to in 14 months (except for that awkward time in April or May when I ran into someone in B&N).

Our relationships were much more dysfunctional then they are with my new friends, so why is it that every few weeks I wax nostalgic, look at their facebook profiles, and briefly consider giving them a call? I can't because I lost my last phone in a giant pile of snow last winter during snomagedden and no longer even have their numbers. I could send them emails, but I always think better of it. I have recently clicked "like" on someone's birthday party photo and got no response. I don't know what I would have done if I had.

Anyway, Chinese food on Christmas was never a "thing" in my family when I was a kid. I only remember starting to go when I was older, sometime in the last 10 years or less, when some family friend (I can't remember whom either) invited us to go. It was fun, the crowds, the lines out the door of people (Jews) waiting for a table, running into people from shul, or maybe an occasional Mah Jongg partner you didn't know would be there. There's more then 1 Chinese restaurant in town. You never know who's going where. It's like a huge party, but nothing remotely resembling Christmas. I haven't done Chinese food every year, some years I stay home alone and order in, some years I don't even order in.

It was 2007 when going out with my mom stopped. My mom started going to Rhode Island with her then boyfriend (I know, I know, you hate that word), now husband to do real Christmas, even though he's Jewish too. I decided to have a "National Chinese Food & Movie Day" party since I'd be home alone in the totally awesome luxury condo we lived in at the time (I wax nostalgic about that condo too). I invited all 20 Jews I knew and still spoke to that were in the area and were between the ages of 18 and 23. Just my 6 closest Jew friends came (I knew that would happen) and we had a BLAST all night. We got Chinese from the place that was so close I could even walk there, and I think one of the movies we watched was Reign Over Me.

This year I am going out with a friend who is not Jewish but is choosing not to go home for Christmas. I'm being a supportive friend to her, making sure she is not all alone and depressed on Christmas, and she in turn is being supportive of me. I don't get out as much as I should. "We'll do Jewish," I said when she told me she had decided not to go home. We saw True Grit. I don't recommend it unless you like seeing a lot of people shot to death.

But I can't keep thinking about how different it is to "do Jewish" with other Jews and how I won't be running into anyone I know. None of the Asian restaurants in walking distance are open, and although I chose one 20mins away (thinking we were going to a different movie theatre) we have chosen not to drive. I feel completely anonymous this Christmas, and that just seems weird. I mean, I'm in Baltimore. In the US the second highest concentration of Jews, after the NYC metro area, is the Balto metro area, and yet I no longer have a Jewish community here. If I chose to stay home all day it'd be different. I should be running into other Jews this Christmas. I should be with other Jews. But I'm not.

This Christmas, I miss my Jewish friends.

Announcing One Month Before Heartbreak

2011-01-02T14:11:00.002-05:00

From Emma of A Writer in a Wheelchair:

One Month Before Heartbreak is taking place from 14th – 16th January 2011. This is a blog swarm (or blog carnival) style event somewhat similar to Blogging Against Disablism Day (BADD). A Blog swarm is where people come together to post on their own blogs about the same issue and then share the links on a master list.

Drastic cuts have been announced in the UK to help reduce the monetary deficit. The proposed cuts appear to disproportionately target the more vulnerable members of society, including disabled people. When the cuts were first announced the government freely admitted that they hadn’t carried out a full analysis of the likely impact on disabled people.

The cuts include:
Removing Higher Rate Mobility Allowance from people in care homes, a move which is likely to make many people prisoners in their own homes (and possibly in their bed in some cases as HRM can also be used for specialist powered wheelchairs).
Changes to the way Disability Living Allowance (DLA) works. One of the proposed changes is that all existing claimants should undergo a medical to ensure people aren’t receiving it when they aren’t entitled. A costly and potentially pointless exercise as medical evidence is needed before DLA can be awarded and some claimants go for medicals anyway. DLA also has one of the lowest fraud rates of all benefits in the UK – I’m not a benefits expert but I have an incurable, lifelong disability – and an indefinite DLA award, I’m probably one of thousands of DLA claimants in similar circumstances. Sending me for a medical would cost a lot of money and achieve nothing that the forms and medical notes my doctors have provided hasn’t already done. All in the name of trying to save the government some money.
Another change to DLA that is being considered is changing it to something called PIP (Personal Independence Payment). With DLA if you have certain conditions your disability is recognised and you get it automatically. If you are considered terminal there is a fast track system. PIP as it’s been described appears to have neither of those safeties. One of the main things which would be looked at with that would be how well you can use aids and equipment. For example, it’s pretty obvious that a wheelchair user has some mobility problems, if they didn’t they wouldn’t use a chair, after all. But under PIP rules they could be ruled to have no problems with mobility if they can use their wheelchair independently.
Council funded care has been cut. The Independent Living Fund is ending which could force more people into care homes.. Access to Work has had greater limits placed on what it can provide which will make it harder for disabled people to find work and potentially may mean some disabled people who are working have to stop. Free bus passes are being withdrawn making transport more difficult. We are treated by the government as second class citizens and hate crimes are increasing.
There are other cuts planned. The 12 Days of Cripmas is a topical take on an old Christmas carol and lists many of them. Chilling but well worth a watch.
The Broken of Britain is a non party political group which was set up by Bendy Girl to help give disabled people a voice in fighting these cuts. Many disabled people and our allies have shared their story, e-mailed their MPs or done whatever they can to help out the cause since it was launched. One Month Before Heartbreak is one of the projects we are doing this year.

As I said above it’s a blog swarm which means people getting together to all blog on a subject or a theme at a specified time. The hope is that by all writing at the same time it raises awareness and makes more of an impact.

The consultation that’s currently ongoing about DLA reform ends on 14th February 2011. Which is Valentines Day, traditionally a day for love but which could severely affect disabled people if DLA reforms aren’t handled correctly. We need to ensure that our voices are heard. We’re holding this event a month before the consultation ends in order to raise awareness of the consultation and give people to chance to respond to it if they wish. Bendy Girl came up with the name One Month Before Heartbreak.

If you want to take part, write about whatever you want. Obviously, it should have something to do with disability and it would be great if you could mention this event and Broken of Britain. You don’t need to write specifically about the DLA consultation and your personal experience. Those are welcome but this isn’t topic specific. You can participate on one of the days or on all of them – it’s up to you.
Nor do you need to write. You can do a video, a recording, write a poem, draw a picture, anything you want! Sharing links and supporting those blogging is also very helpful

I [Emma] plan to make space available on my own blog [A Writer in a Wheelchair] to anyone that doesn’t have somewhere to share and wants it.

You don’t need to be disabled or a carer or come from the UK to take part. For our cause to be successful we need support from the international disabled community and from the non disabled community worldwide.

The full details of One Month Before Heartbreak (as they stand now) are available here

One Month Before Heartbreak

A Broken of Britain

Blogswarm

14th – 16th January 2011

Firsts

2011-01-01T12:14:00.000-05:00

I think I saw someone do this last year, but I don't remember who. Here is the first sentence of my first post of every month of 2010:

Jan: I know there are many more people that read my blog and don't comment than people who read my blog and comment

Feb: If you've visited my blog at all over the last three weeks you probably noticed my plea for money fixed at the top of this blog.

March: WHY I WANT YOUR SUPPORT FOR DISABILITY RIGHTS!

April: In my B&N the teen self help section is right next to the bathroom, and so I've often found myself flipping through the anxiety workbook for teens on the way to or from.

May: It's that time of year again!

June: To quote one of Maryland's long time CIL directors, from the other day, we don't do case management.

July: video and no text

Aug: About 2 weeks ago I put out a call to some bloggers I am FB friends with.

Sept: I've been meaning to get this up--it's too bad you can't read my shirt.

Oct: ECT ruins lives.

Nov: I don't know how I got to Virginia Wood's blog.

Dec: Our Fallen Brothers and Sister