Coming Back

I've just been notified that I'll probably be hired probably within the next 6 weeks to do some writing, for money. So in preparation, I'm dusting off the cobwebs from this part of my brain, and rejoining the writing world.

Over the last 6 months I've worked 2 jobs, and then 1, now 2 again soon (this 1 is connected to the job I had over the summer), stopped horseback riding unfortunately, and my psych meds, but continued with therapy, art therapy, massage therapy, my support group, and my personal trainer. I also briefly took up chair yoga, and was in a popular YouTube video at the latest ADAPT protest. I'm happy to say I finally got Medicaid so I can stop feeling like a poser every time I chant "MY MEDICAID MATTERS!"

Glad to be back, hope I still have some readers.

When You Least Expect It...

I was talking to a friend maybe 3 weeks or so ago, give or take, and I said, completely without thinking about it, "There still might be something there, eventually, but in the meantime, it's his loss. I need to start looking, because I have something to offer someone." Or as I like to put it (there's a cute story behind it for another time) "Some Guy."

If I was someone who gasped, I would have let out a gasp right then. Who is this person uttering those words, "I have something to offer someone"? Not me. Not the person who used to sit in her room and cry because no one would ever love her. Not the person who used to think using a chair made her a burden. Not the person who has been consumed with apathy for well over a year. Not the person who always uses her failures as data to prove she's always going to be a failure. (THANKS former shrink!)

But yet I can't deny the fact that I did say it, when I least expected it. "...it's his loss. I need to start looking, because I have something to offer someone (Some Guy)." Where that sudden burst of self-esteem came from I might never know, but it gives me some hope that maybe over all these years I've made some progress somewhere.

Now if only I could make some progress in the laundry/dishes department I might get my life somewhere...

Access and Hypocrisy

I feel like I must preface this post by reminding readers that I am a die hard ADAPTer. My commitment flows through my veins 24/7, even if my constant depression and other issues make it almost impossible for other people to see it. However, two things happened over the course of a little over a week that I feel have questioned my credibility. Right now I'm up not able to sleep because of a few things, one of which is that I'm trying to reconcile the values I've developed as an ADAPTer with the positions I'm putting myself into.

The first thing that happened was that over the winter I decided I wanted to see an art therapist. I never liked doing art in my youth; my visual and fine motor deficits causing me to put up walls due to frustration, but after I spent 7 weeks in the summer of 2007 taking Intro to Art Therapy, art became my #1 strategy for avoiding my overwhelming anxiety. I say avoiding because instead of facing my anxiety head on I would spend hours with crayons and markers in an effort to ignore/push aside how uncomfortable I felt. This actually made my anxiety worse.

I created some great art though, and while my art will never hang in a professional gallery, I can no longer say I am "bad at art." I haven't touched my art materials in 2 years though, which is a good thing. A conversation with a friend once went like this:

"You want to come over and do art?"

"I'm not in the mood."

"You don't have to be in a good mood to do art."

"No, I have to be in a bad mood."

However, I noticed some patterns when I was doing art and I don't understand what they mean. I've been wondering all these years and finally over the winter started seeking out an outpatient art therapist.

The second thing that happened was that I decided to pursue an opportunity at work. There has been a recent staff turnover, and I can, most likely, pick up a few hours a week helping to develop our transitioning age youth program, which in 3+ years has never gotten off the ground. I've had some great ideas that the people running it agreed were good, but then nothing happened, and I decided it wasn't wise of me to strong arm them. I decided I wasn't willing to work on this unless I was being compensated.

What do these two things have in common? Both are located in inaccessible offices. The art therapist works within a group which is located in an older building, and her office has 1 step outside. Just 1 -- it'd be easy to ramp. If I ignore the issue, I have to be careful of where I am coming from or going to. I obviously can't bring my chair with me. While I have that "luxury," for lack of a better word, of deciding to do this, I don't feel right about it. In the 5 years I have been seeing my other shrink I have gone to appointments from places like our state capital, or gone straight from her to an ADAPT mtg, lugging bottles of soda on the back of my chair.

The organization I work for operates programs in 5 locations. I already work at 2 of them. One I bring my chair to 6 months out of the year because it's so close to where I live that rolling to work is faster then waiting for paratransit. The other I have brought my chair to twice over the last 10 months, both times because I was coming from somewhere. Out of all 5 locations, my new position, should I choose to ask for it, will be located where our executive offices are. The only location that is completely inaccessible. Not only are there steps up to both of the outside doors (one without any railings), but the main floor, the one where all the programing is, is divided in half by 3 steps. In the two years I have worked here I've rarely had to go there, so I decided not to pick this battle, but if I'm going to be working there regularly, I really don't feel that I need to not go places because I won't be able to get into work afterwards.

The easiest thing to do would be to state that they must move the program, however I don't feel like this would be fair to my new boss (I'd have 4). I'd only be working a partial shift, but with the staff turnover her hours are being expanded so that she's working a full shift that day. If we move locations it cuts into her hours. So I guess that means that I ask (demand?) that ramps be installed. The thing is that 1, I'm not sure it is possible to ramp the inside steps, meaning that if we ramp one set of the outside steps we'd literally be doing half the job, making only half the place accessible. I could get out of my chair and struggle with the inside steps, but not everyone can. A half job is not OK with me. The other thing is that they're not legally required to do this. I have a good enough sense of our finances to know that they can claim "undo hardship." Is it my responsibility to find a way to get ramps installed at a discount, or theirs? This I don't know.

My first inclination was to ignore both of these access issues, push them to the back of my head and pretend that they're OK. I've realized that I can't bring myself to do this, which is actually a relief. I won't spend all my time feeling like a hypocrite. I won't spend all my days feeling like a sell out. I won't be limiting how I plan my days. However if I bring these issues up and they can't be resolved, am I limiting myself in other ways? Am I limiting my ability to knock down my psychological barriers? Am I limiting my ability to develop valuable work skills? I'm not OK with that either.

Which is leaving me at a loss, and is contributing to my insomnia. Anyone know where I should go from here? That is if you've gotten this far...

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

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...

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

"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.

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...

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.

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.

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

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.

Next White House Disability Call

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.

WHAT A WEEK!

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...

Deficit Reduction on the Backs of the Most Vulnerable

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

An Update on Finding a PA

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

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

I'm getting nervous, being that it's almost March. I have options of either going the look for a student that can drive but who doesn't know their way around a horse route (sending 2 more emails, which is free) or putting classified ads in both of the school's papers. That gets pricy. One school charges $24 for the first 60 words and the other charges $10 for the first 30. Being that I had trouble getting it down to 60 (see below) I'd probably just submit a 60 word ad there too, which will cost $19. Unless someone can help me cut it down.

Disabled & looking to hire student to pick me up at *censored* at 1:45, EVERY OTHER THURSDAY, starting April 7, drive me to *censored* Horse Center, *censored city*, help me tack my horse, drive me home, 2/3mi from *censored school*. Through 2011-2012 school year preferred, through end of Sept 2011 minimum. Pays $25 cash EVERY OTHER WEEK. Contact via email *censored*

So what would you do? Emails or classifieds?

White House Federal Disability Budget Fact Sheet

I'm not going to comment because I haven't even read it, but I thought I'd distribute. Maybe I shouldn't, maybe I'm distributing government propaganda, but I'm not capable of creating original content today.

2012 Disability Fact Sheet

I'm Hiring My First PA

To follow up from last years Valentine's Day post I will be starting horseback riding lessons in about 6 weeks I hope! I will be starting a temporary part time job and will be saving most of that $ for horseback riding lessons. I can hopefully stretch the $ out for a year by only going once every other week. The problem, which is not a problem is that paratransit only operates within .75mi of a bus/train line and of course barns are in the country and buses typically don't operate in the country.

I was fortunate enough to find a barn in civilization that has both a typical and therapeutic riding program, but of course it is still 0.9mi from the closest bus stop says google maps, and the paratransit scheduler people say it's 1 street too far. Although I could find the closest possible address and huff it, that just isn't my idea of stress relief. That's stress creation, and riding is supposed to be stress relief. So I'll be paying someone (a student) to drive me there and back. There is a state program that could pay back most of the $, but I've heard there's a waiting list, so I'll be paying out of pocket and looking for someone who'll do it for cheap. I have several options of places to look. I'm rather excited!

Any advice for a first time employer?

On Work & Disability

From the article Questions of Balance: Work and Mental Health

From Mr Trouble, a Self-advocate with a Developmental Disability

Human Rights

[image to the left says EVERY HUMAN HAS RIGHTS]

This post is a continuation of yesterday's, in fact I was thinking of just going on about it in that post, but I decided it was a separate topic.

So that march I went to on Sunday, the march started 1hr after it was supposed to. Plus, Going from Baltimore to DC on the weekend using public transit takes 3hrs each way. Needless to say, there was a lot of time to talk.

What did we talk about? We talked about human rights without ever really using the term "human rights." We talked about the "DD world," the "LGBT movement," and the "consumer movement" (mental health)

• We talked about how the DD world has it together way more than the consumer movement (at least here and mostly in terms of legislative POWER).
  
• I brought up "mad pride" and how that seems very new, although I know nothing about it really.
  
• She talked about the LGBT movement and how people are afraid to associate with the consumer movement because people still conceive LGBT as being a "mental illness" and it is not. They want to get far away from it.
  
• I talked about how I wondered why On Our Own isn't part of the Cross Disability Rights Coalition when psyc issues are disabilities? Plenty of people are on SSI/SSDI and medicaid because of them. CDRC is comprised of People on the Go and ADAPT. I was told that when it was formed the "DD folk" wanted to stay away from the "psyc peeps" because people often assume that they have psyc issues and they do not.
• She said that from what she's seen it goes both ways. Some people in the consumer movement don't want to hang out with DD folk because people think they have a DD.

I've tried to get people involved in CDRC and I've gotten the impression that they don't consider their issues disabilities (even people on medicaid/SSI/SSDI). They don't seem to care what disability, it's not specifically DD that is getting to people, it just seems like they think disability issues aren't their issues. My roommate seems to think that LGBT issues aren't my issues. Well I've got news--THEY'RE EVERYBODY'S ISSUES.

We couldn't really hear anyone at the rally, so we left early, but the little I got was that employment discrimination (specifically 'don't ask don't tell') and feeling like a second class citizen are big things. I know I've written on here about feeling like a second class citizen and I'm pretty sure I've written about the fact that 70% of PWD 18-64 who can and want to work are unemployed in the US (WAIT! I did, and it was in a post bout psyc issues. See... cross-issue) A lot of PWD can't get married, very similarly to LGBT. If they get married they lose their services--their SSI, their health insurance, their attendant care, things that they need to survive. I told my friend that the aging community was involved in COMMUNITY NOW as well as the disability community. There isn't anything different about their imprisonment. She wonders why more things can't be like that. Why people stay in their silos. So do I.

The picture below was taken on Sunday in Atlanta. The man in the picture is within the grounds of the nursing home where he lives--THAT IS SURROUNDED BY BARBED WIRE. These are HUMAN ISSUES. No one should have to live like that.

'Mental Illness' is Still a BIG Stigma

Thank you Captain Obvious... below are 6 statistics from a national survey commissioned by the Canadian Medical Association. From the Ottawa Citizen: Many Say Mental Illness is a Cop-Out for Bad Behaviour (which I found through media dis&dat). I just had to comment.

• Just half [of the survey respondents] would tell friends or co-workers they have a family member suffering from a mental illness, as opposed to 72 percent who would share a diagnosis of cancer

• One in four (27 percent) said they would be fearful being around someone with a serious mental illness

• Nearly half (46 percent) agreed that “we call some things mental illness because it gives some people an excuse for poor behaviour and personal failings.”

• Two in five (42 percent) aren’t certain they would socialize with a friend with a mental illness

• 55 percent said they would be unlikely to marry someone with a mental illness

• Most wouldn’t hire a lawyer, someone to teach or take care of their child, a financial adviser, a doctor or a landscaper who has a mental illness.

Back in the fall I went on 3 dates with a guy over a 6 week period. My first 3 dates ever in my entire 23.5 years. A mutual friend set us up and told him I have CP, but did not tell him I'm bipolar as well (why the hell not?). Honestly, I wish he had. But people don't do that. "Just half would tell friends or co-workers they have a family member suffering from a mental illness, as opposed to 72 percent who would share a diagnosis of cancer." This poses a big problem for me, being a person with screws lose in my head who wants people to know. Except it's just not socially acceptable. So what do I do? What is the right way, the correct way, the proper way to disclose? I never did tell that guy, but I did tell my 5 closest friends and my mother right away. Everybody in my department knew right away because I withdrew from classes that semester. That's the easy way. How I told my mom and my friends I do not remember. It was somewhere close to a year and a half ago and I was too depressed at the time to remember much of anything.

I'm going to graduate soon and I need to start looking for jobs. Conventional wisdom tells me not to tell anyone. My g-d I'm going to go into the human services and "most wouldn’t hire a lawyer, someone to teach or take care of their child, a financial adviser, a doctor or a landscaper who has a mental illness." LANDSCAPER??? Just noticed that one. C'mon people *shakes head in disbelief* Most people wouldn't hire a spaz either. The unemployment rate of PWDs age 16-65 in the US who can and want to work has remained steady for years at 70%. That of course is not counting underemployment. Now it is much worse. to have the stigma of a mental "illness" looming over me along with the inherent ableism associated with my visible cripdom, that combination is probably the kiss of death. If I work for an independent living center of course they are going to know. I don't think they'd be afraid. Anywhere else? Ummm......

"[T]here is ... an invisible army of people walking to work in the office towers ... who themselves have also experienced some form of mental illness and substance abuse, who have recovered, who are back in the workforce, who are back with their families ... But the message is very clear from this survey: They’re not going to talk about it. They’re not going to disclose. And they’re not going to disclose as long as there is a culture of shame, secrecy and stigma.”

Of course they're not. "One in four (27 percent) said they would be fearful being around someone with a serious mental illness ... Two in five (42 percent) aren’t certain they would socialize with a friend with a mental illness." If people won't even socialize with us, if they avoid us like the plague, they sure as hell aren't going to hire us. Does my BP impact my life enough to be considered serious? I don't know, but either way, this puts a huge weight on my shoulders-- trying to hide something so big. I don't know if I can do it. It's just too much for me. But I can't tell people. I just can't. I don't live in Canada, but we don't do that down here either. Honestly, I'd love it if I could just shout it from the rooftops. "I'm a 'crazy' cripple!!!!" I don't think that would go over well. There goes any job lead down the toilet. Or how about this for an opening line when I go out on a date again: "Hi, I'm Cheryl and I'm BP, I walk like crap and my eyes suck. Nice to meet you." HA HA!!! No...

I'm going to go to social work school one day. Really I am. After however long it takes to tighten those lose screws in my head. I couldn't get through the coursework now, and I want to go into clinical SW, not administrative. I'd have to see clients whose issues are just too close to home right now. I don't care if it takes until I'm 40, although I hope not. The big question is though, when the time comes do I tell my clients or not? Even on a much lower level I keep getting fed the message that self-disclosure of any kind is not allowed in helping relationships. The helpee is supposed to share, NOT the helper. The way people stress this I can't even tell someone my favorite color is purple, let alone that I have a diagnosis of BPD. And if you absolutely have to disclose something for the benefit of your client, make sure you tell them it's some mysterious client. NOT you.

My last shrink has a completely fused knee since roughly 45 years ago. He cannot bend his left (?) knee at all; his leg is completely straight and he walks oddly and sits oddly. The first time you see him he tells you what's up with the knee. Deals with the 800 lb gorilla in the room. He has appts booked up 7 days a week. People don't avoid him like the plague (but seriously, they should, he's got the most warped mind I've ever seen).

My current shrink, however, the only thing I know about her is that she works the weird hours she works because she has 2 little kids. Nothing else in almost 2 years. Would I like her to tell me something else about herself? Of course I would. I'm human. And frankly she knows almost everything about me, it's sort of more than fair. But do I want to know if she has BPD? I'm pretty sure she doesn't BTW, but you never know. If you're on your meds and doing what you have to do it's pretty easy to pass as a non-crip. Do I want to know? Honestly, I don't think I do. As much as I want to be able to appropriately tell my clients that I have BPD, as much as I think it will allow me to connect with them more, help them to be more compliant (because I'm walking the walk and not just talking the talk) I really just don't want to know. She can keep that little tidbit of info to herself (however curious I actually am). It wouldn't be a good thing to know. It would be too distracting. I'd always be wondering if she's on her meds, if she's OK. An unstable shrink trying to guide an unstable client, now that's just a recipe for disaster that I don't want to try.

55 percent said they would be unlikely to marry someone with a mental illness. Would I date someone with a mental 'illness'? Could I marry someone with a mental 'illness'? I'd like to think I would. I want a passionate activist (Jewish) man. Passionate activist (Jewish) men might just happen to have mental 'illnesses.' However, the unstable/unstable thing has me concerned. If Mr Mysterious Man should happen to have some issues one day would I be able to handle it? Would I be strong enough to be able to help him without it triggering my issues? If we both became messes at once, OMG...

I don't like that I seem to have a double standard. I want to tell my clients that I have BPD but I wouldn't ever want my shrink to tell me if s/he does. I want someone to want/need/love me, accept me for who I am, but there is a possibility that if they told me they had BPD I might just kick them to the curb. I have, since my diagnosis, been in conversations talking about a person (who isn't there) doing something and responded with "Well isn't s/he BP?" in the same way I did before the diagnosis. Somewhat condescending like. As if I'm not just like them. That thought always comes to me in the split second after the words come out of my mouth. But I do it all the time. If I can't fully accept people for who they are, if I have inherent ableism ingrained in me just like ABs, who am I to expect them to treat me w/dignity & respect?

So how does a "crazy cripple" disclose in "a culture of shame, secrecy, and stigma" with all this internal and external ableism surrounding everyone? And how does a crazy cripple shed her ableism? Can anyone tell me? And can someone please give me another term to use besides "mental Illness?" I HATE those words.