URGENT ACTION Needed to Protect Medicaid Covered Services for PWDs!

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...

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)

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)

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!

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!

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)

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!

...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...

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...

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...

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

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

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

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?

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.