You're SO ORGANIZED

Another story of my mom at the big meeting. She was sitting there and a sheet was passed around. The dos and donts of an ADAPT action. This was covered at the new person legal training @ 9am, but I guess they thought everyone could use a refresher. I dunno. There were things on the sheet like do NOT bring illegal drugs or alcohol on the march and bring all your medication in their original bottle so that ADAPT leadership / cops / other emergency personnel know what it is. That keychain I have doesn't cut it. They also reminded those who have not, that they needed to fill out their emergency forms ASAP.

My mom also asked why some people have things on their chairs and some do not. "You mean the flags?" [there's Ray, right, with his purple flag] "Yes." They're color leaders or day leaders. There are 4 color leaders per group and 2 day leaders per group. There are 6 groups. Ray is a color leader. He has one purple flag on his chair. His day leaders have 2 flags. A purple and a white. I then pointed to my left arm rest, where until just now when the thought crossed my head to take it off, there was a piece of yellow tape on my chair. That is so that everyone knows I am in the yellow group.

1) Day leaders know all about what is going on for the day & color leaders know some of what is going on. Everyone else knows NOTHING. We play follow the leader all day. 2) More importantly, day/color leaders are in charge of everyone's safety. They have a list of everyone in their group, stand over potholes so no ones chair gets broken by one, and make sure that there are no gaps in the line. If a gap in the line was caused by a broken down chair, they make sure someone comes to help and that this person isn't left behind alone. There is a reason why we are so stringent about making sure we are SINGLE FILE, NO GAPS! [left, on constitution and 7th] SAFETY. If there is a gap, some idiot driver might try to make a run for it, and no one wants to get hit by a car. Day leaders, I didn't know, wear walkie talkies with headsets so that they can communicate with each other.

I hope that my mom didn't think we charge on a target and burst into a building in mass chaos. I hope the country doesn't think so. Maybe it looks like it? [that's Jay on the cover of Roll Call, right, being man handled by cops] That's NOT what we're about. We're actually quite militant [outside post]. We have everybody's safety and our image at stake. Those lunch counter protests in the south 50 years ago had strict rules too, for image and safety. Would you put YOUR family member in danger? ADAPT is one giant extended transcontinental family.

"You're SO ORGANIZED," she said. "Yes," I answered and chuckled. That's an understatement.

ADAPT is Like High School Youth Group, Only Better!

My mom came down to the Holiday Inn on C street last Sunday. She was supposed to come down for the fun run, but ended up coming down just for the big meeting and then leaving. She's trying very hard to understand my strong attraction to ADAPT, and I thank her for that effort. She's definitely out of her comfort zone.

My mom does youth group stuff for a living (yes, some people get paid to do that) and I was seriously involved in youth group as a teen, serving as our chapter's co-president for 2.5 years, and as our exec vp for 1/2 year before that. I realized while she was sitting there next to me how much my experiences in ADAPT mirror my experiences in USY.

I used to be a hard core USYer and thought I'd be a lifer. I even used to staff conventions. Now I'm a hard core ADAPTer and know I'll be a lifer. Of course there really are people who are lifetime USYers, stuck back in high school for all eternity, but the thing with high school youth group is that you eventually have to grow up and move on (No mom, that does NOT mean you can throw out my t-shirts). I've moved up to bigger and better things, ADAPT, but would have probably been one of those lifetime high schoolers had I not found something to replace that hole in my life, in my soul. Yes, thats right, if you know me in real life, in case you haven't noticed, ADAPT is so much in my soul that I might wither and die without it. Even if I experience "compassion fatigue" (the new buzz word for burnout, what I sat in class learning about this morning, don't I sound smart?) ADAPT will always remain close to my heart. USY used to, but not so much anymore. I'm still NOT ready to give away those t-shirts though.

The weird thing? My close friend I went to DC with had friends come to visit her for dinner last night and it turns out that they have a 17 year old who is a big time USYer. We immediately felt a kinship and hit it off even though I am 7 years her senior.

So without further ado, here is a list of the first 10 ways I thought of that ADAPT is just like high school youth group. Both...

1. offer you the opportunity to meet people from all over the country, either at December's yearly International Convention, or at the Spring/Fall National Action, which, coincidentally both end with a dance [picture left. don't know when that was taken, but sometime between 10:15 and 11pm]. Some of my closest friends are from Chicago and Michigan.
2. make it impossible not to make intense long lasting friendships within nanoseconds. I mean the energy... intense.
3. produce completely AWESOME chapter / regional / [inter]national t-shirts that fill up your wardrobe to the point where they are the only things you wear.
4. are made up of local chapters that hold many kinds of events throughout the year.
5. are run on practically no money and require a ridiculous amount of fundraising.
6. also offer a plethora of other awesome things to buy besides t-shirts. Like flair.
7. never offer enough sleep.
8. consume all your time and energy.
9. pump you up with chants and songs.
10. fill your heart with joy.

I want to work for a CIL and teach 15 year olds about public policy. Get them pumped up, take them to the fun run, get them more pumped up, and then send them home to keep them away from the arrests. Although hill visits would be cool too. A 15 year old shaking Tom Harkin's hand, priceless. How? I have no clue. That's going to be hard, especially since I don't know all that much about public policy.

My mom took this opportunity to say, in a snide tone, that all 15 year olds want is to fit in. This is true. So true that I went into several deep depressions during high school. I then replied in my head that this is where I fit in. This is where I don't feel like people are exasperated by my interests. This is where you can roll into a room and people will welcome you with open arms. Does anyone in high school do that? No. You have to seek out those environments for yourself / your kids.

To share 2 quick stories, I was sitting with a friend while looking for another friend, who I could not for the life of me describe. In the outside world I would state that she's in a powerchair and 3ft something. She sticks out like a sore thumb. In ADAPT, powerchair & 3ft something means nothing. Which one?

Story #2. Last year a 14 year old recent paraplegic (car accident) attended the action with her able bodied cousin. She cried hard when the dance was over. She wanted to stay there forever in the safe enveloping love of our community. I'm sure this was the first place she felt accepted post accident.

Yes, 15 year olds just want to be like everyone else. But if you're a chair user, a waddler, a 3ft tall person, are missing half a leg, blind, you cannot. You are not. Even in USY where I felt most at home during those high school years I was still somewhat of an outsider, subjected to erroneous assumptions by the staff. Except in ADAPT. In ADAPT I am truly 100% a member of the gang.

A Short Wordless Wednesday from DC

This is Sean at the fun*run last Sunday. If you can't see what this says really well, Sean is an amputee, and he got his latest leg covered in the Fall 09 National ADAPT t-shirt. So of course it has the free our people dude, says free our people above and ADAPT below, and I think community first there in orange (the color of the CCA). I'm not entirely sure if there is any other phrase around the border of the shirt, I'll have to go look at mine.

I'll Post More Substantive Posts When I Have the Time

Checking in @ the ADAPT National Action in DC--A Photo Post NOT on A Wednesday

Silly Amber! Why this was tweetable I have no idea! I was filling out my emergency contact form. BUT... I love when my hair looks good in pictures! That, and notice my yellow/orange headband? I wear it everyday FYI. Oh, and if you're one of my real life friends, I guess "C" isn't the only one that travels with these gigantic pens!

Wordless Wednesday ADAPT Preview

In preparation for next week's ADAPT National Action in DC I thought I'd post one of the most AWESOME pictures ever taken (stolen from someone's Atlanta facebook photo album)

If that doesn't put you in the mood, I don't know what will. I <3

Oh, and THERE'S STILL TIME TO MAKE A DONATION ON MY FUN RUN PAGE

Balance

It's the April blog carnival and I wasn't planning on writing a piece for it until I read Emma's. This month's theme is BALANCE. Emma talks about her very visual disability (full time chair user) and trying to figure out when people are reacting to her disability/chair, and when it isn't a factor. I can really relate to Emma because our primary disability is the same. I worry about that all the time.

But I've been reading a lot about bipolar in the workplace, which is a totally different ballgame then CP. I should hopefully have a summer internship and this is something that's causing a gigantic problem in my head. I've spent my entire life with a visual/physical disability and the last quarter as a powerchair user. However, although I've spent 40% of my life with a psychiatric disability, I've only known about it for one tenth of my life—2.5 years. A very short time.

When you have a physical disability, in my opinion, it is easiest, the least stressful, to learn to be transparent. Your disability is transparent, I mean how do you hide a 240ish pound wheelchair? Behind a tree? So you might as well be transparent as well. Ask me if I can have sex, I'll answer you as best I can. It was like a huge weight was lifted off of me when I finally got to this point. But I had 20+ years.

On the flipside, bipolar is not a transparent disability at all. So does one need to learn to be transparent with this disability as well? The answer is not as obvious, and it's hurting my head. Conventional wisdom says not to, but being that I've been dealing with my physical disability 10X as long, keeping quiet just doesn't seem to compute. In a comment to a post on the subject, this guy said that he doesn't know which of his co-workers have diabetes or fertility problems, and I went, “well gee, that makes sense.” So you'd think I'd have my answer.

I could go into my internship and look at my supervisor and say, “I've got this thing with my eyes [that's invisible, but CP related] and I can't do this. I'm just, I'm having a lot of trouble with it,” and hopefully I'll have an understanding supervisor and we can come up with something that will work. Hopefully I won't have a supervisor who thinks can't = won't (that happens a lot). But I can't go to my supervisor and say, “I'm having nightmares about you because I'm bipolar and delusional.” As odd as this may sound, I want to, but I know it's inappropriate, probably some kind of boundary issue. Especially because I'll be laughing when I say it.

I want to because I'm finding that the more I say these things out loud (blogging / emailing / texting supporters, not the same) the more I realize how ridiculous I sound. I want to because I want to be transparent with both of my disabilities, because I would tell my coworkers if I had diabetes. But if I do, I'll probably alienate the entire office. I don't mind being labeled the crazy lady, but who wants to be labeled the crazy lady? I sure don't.

What could happen if I tell my supervisor something less crazy? What if I tell her I'm adjusting my meds or that my work history hasn't been stellar because it depends so much on what kind of episode I'm in or in between? My default setting isn't working anymore and it's a painfully hard adjustment. Probably as hard as it was to learn how to live with CP, which was hard for a long time. But I don't have 20 years, I have ONE MONTH. I worry that I won't find the balance of how to deal with my psychiatric disability in time, or at all, and that things will go as disastrous as they have in the past (that was for different reasons). I want to deal with both of my disabilities in the exact same way, but I can't. I have to find a balance.

Are You Sick of me Posting my Letters to Congress?

I wasn't going to post these, but I'm running out of ideas. Keeping up with writing posts 5 days/week is A LOT. So without further ado:

Senator Cardin/Mikulski:

I am writing in strong support of my friend Ari Ne'eman's confirmation to the National Council on Disability.

Ari, a current resident of our state, fights for an inclusive society, so that everyone can obtain the appropriate supports that they need, tailored to them. He fights so that people affected by all types of disabilities can live better lives.

I hope you are not the anonymous senator blocking Mr Ne'man's confirmation. [As the sponsor of Rosa's Law] I'd be ashamed of you [for being a hypocrite]. How could you not [I know that you] support an inclusive society [and]? [took the first 6 words out] I hope that you do, and that if you know the identity of the Senator blocking Mr Ne'eman's confirmation you will pressure them to do the right thing and withdraw their motion.

Sincerely

Cheryl *Censored*

Co-organizer Maryland ADAPT

The words in brackets are what I used to tailor Senator Mikulski's letter to her. You can find the address of your Senator's office by doing a quick google search of their names. If you do not know their names I suggest googling [your state] senators. I also suggest that you mail your letters to their closest local office, and not to DC, as they will be read in a more timely manner, and that you write them by hand on brightly colored stationary, so that they will stand out, as I always do. This time it was a blue glitter gel pen on pink stationary. I am also going to write a thank you note to Obama for sticking his neck out.

THERE'S JUST 1 WEEK UNTIL ADAPT INVADES DC!

I wrote this post months ago... don't know why I never posted it. Here's an ADAPTism for ya from way back in the summer:

My friend came to eat dinner and chill not long after I had come back from AYS. He was asking me about Chicago. "Did you get any action?"

"Yeah," I replied. Of course, I thought. That was the whole point of me being there in the first place.

Then I realized he meant the other kind of action. No, no I didn't. That was not why I was there.

I would be forever grateful if you donated to ADAPT.

Is Britain Way Ahead of the US?

I think so. It seems British newspapers cover the topic of disability & sex, but we do not. They also have reality shows with disabled cast members (see below) or even shows built around disabled casts, such as Britain's Missing Top Model, and I think they had some kind of wheelchair dancing show akin to Dancing with the Stars. Yes, we had Heather Mills and Marlee Matlin, there are those TLC shows and Extreme Makeover: Home Edition, there was Josh Blue on Last Comic Standing, but we haven't produced a global sensation and Britain has--Susan Boyle. Let's not forget, How's Your News? didn't make it, and My Deaf Family seems to be having trouble making it onto TV in the first place. I would think TLC would eat it up.

From what I've read disability is fast becoming a "regular" integrated part of British society, just as other minority groups have over the decades, and we are far behind. In the US based shows mentioned above it seems almost as if PWDs have been put on display to be gawked at like a sideshow (am I going too far in my comparison?).

When is the last time that a disabled actor was on TV as just a regular cast member? The last I remember is Theo Huxtable, from The Cosby Show, who was diagnosed as dyslexic late in the show, but that was 20 years ago. (Is that actor actually dyslexic?) I was going to write a post about Dr Fife on Private Practice (who really is a quad), but I could never get my thoughts out. Maybe we are coming along? The show deals with his disability in a very frank manner, going as far as including an episode surrounding sex (I'd jump for joy if I could jump).

What do you think? I found this article through media dis&dat

By Geoff Adams-Spink, Age & disability correspondent, BBC News. Pictured is disabled actor Adam Best, who stars in "Eastenders."

Whether it is Jim Davidson refusing to perform in Plymouth because the front row of the theatre is occupied by disabled people, or Frankie Boyle lampooning people with Down's Syndrome, comedians often find themselves in hot water when it comes to disability.

Disability is one of those things that makes people feel awkward - there is perhaps a deep-rooted, psychological fear of contamination by association.

So what we often do when something makes us feel uneasy is to laugh about it.

It's still well within living memory that TV comedians would poke fun at people from different ethnic groups - but broadcasting executives soon cottoned on to the fact that they risked alienating growing sections of their audience for the sake of a cheap gag.

Performers - Davidson included - had to clean up their act on screen, even if their live performances in clubs and theatres still used traditional targets as the butt of their jokes.

Laughing at the expense of disabled people continued to slip beneath the radar of commissioners - it was almost as though to be edgy and alternative, making jokes about disability was seen as some sort of badge of honour.

David Blunkett was seldom if ever mentioned on Have I Got News for You without his blindness being ridiculed.

A BBC Three chat show once had author Will Self telling the audience that he enjoyed playing a game called "child or dwarf?" with his children in the car.

Anyone of small stature would be the subject of speculation and - in the case of a dispute - his son would be sent out of the car to take a closer look. The audience apparently found this hilariously funny.

But the TV landscape has changed considerably over the past few years.

Coronation Street is the latest of the British soaps to announce a regular disabled character. EastEnders, Hollyoaks and Emmerdale have already done so.

There have been disabled characters in Holby City, and Cast Offs on Channel 4 was a big hit.

Actress and model Shannon Murray received critical acclaim for her overtly sexy Debenhams posters which resulted from the How to Look Good Naked show, again on Channel 4.

Disability - on and off-screen - is being normalised as never before. It is no longer the stuff of fantasy to imagine that a visibly disabled person might read the Ten O'Clock News or present highlights from Glastonbury.

After all, Frank Gardner - who was injured in Saudi Arabia - regularly pops up on news programmes.

So does Gary O'Donoghue - blind since childhood and one of the army of political correspondents now delivering blow-by-blow accounts of the election campaign.

It is highly likely, given all of this mainstreaming of disability, that Mr Boyle's jokes about Down's Syndrome will go the way of mother-in-law jokes or sitcoms like Love Thy Neighbour.

We will probably watch comedy archive programmes in 20 years time and ask ourselves, 'Did we really used to laugh at that?'

Wordless-ish Wednesday

Reas has a much more positive take on this then I do!

On Rolling Access Funds

All the way back in Feburary I trekked to Annapolis to attend 8hrs of budget hearings. I don't know why I am just writing about this now, over a month later. Due to snomageddon and hearing cancelations, budget hearings had to get smushed to my benefit, although I feel bad for the Secretary and Deputy Secretary of DHMH. It turns out that the developmental disabilities administration (DDA) had its hearings in both the senate and house and mental health administration had its hearing in the senate back to back with an hr lunch break. 9am, 1pm, & 3pm. It also turns out that they went longer then 8hrs. Needless to say it was a LONG day for everyone. I had to guess what time to schedule my paratransit ride for and apparently 5pm was too early. They were still going when I left....

I wanted to focus this post on one program I learned of in the course of the day, a program that I had never heard of, but has been in existence for 20+ years. It's called Low Intensity Support Services (LISS) but until somewhat recently was called rolling access funds. LISS provides one time funds up to $3000 to assist individuals with developmental disabilities in meeting their needs in the community. According to one of the provider's websites, you must

(1) Be a Maryland Resident - Be a verified resident of Maryland (COMAR 0.22.12.05)

(2) Have a Developmental Disability—The individual appears to have a developmental disability, or does not appear to have a developmental disability, but may be eligible for individual support services in accordance with Health-General Article, 7-403 ©, Annotated Code of Maryland (COMAR 10.22.12.05)

(3) Currently not receiving any DDA funded residential services with the exception of Resource Coordination.

Note: Individuals enrolled in a Medicaid waiver program (i.e. Autism Waiver, Living at home, etc.) and children within the Maryland school system should have their needs met by that service system.

This program seemed to be the focus of the DDA senate hearing because the committee chair had recently gotten a call from a constituent who was distraught. According to the regulation (which is not listed on the DDA LISS site) an individual is entitled to apply for LISS funds yearly as long as it is not for the same service. For example, in 2007 you could apply for money to use for respite services for your autistic son so that the rest of your family could go on a 2 week vacation, and that would be it for respite funds, but in 2008 you could apply for LISS funds to purchase and install a sensory swing in your basement.

Now though, due to our budget crisis, DDA arbitrarily decided after 20+ years that instead of being eligible to apply for LISS funds once per year, an individual is only eligible to apply once in their lifetime. The constituent had been turned down for funds, was told that his daughter had used them up already and was frantic. The thing is, neither the DHMH Secretary (the department DDA is housed under) or deputy secretary knew what the regulation was, and when looked up it clearly stated once per year, thus they had no legal right to change the eligibility criteria without first getting the regulation changed. It was quite humorous listening to them try to defend their decision.

I'm writing about this because I am outraged. I am outraged that PWDs and their families aren't told about the services they are entitled to over and over again. Growing up we didn't have a lot of money and often struggled to pay for services I needed that were not covered by insurance (which would have been eligible for LISS). In 9th grade when my back hurt so bad I could cry we could have used LISS funds to pay for my twice weekly massage therapy appointments at $60/hr $120/week. In 12th grade we could have applied for LISS funds so that I did not have to stop horseback riding (also $60/hr) after my parents separated and the divorce lawyer got my horseback riding money. Horses are integral to both my mental stability and spasticity management and that could have kept me out of or lessened the impact of the decent depressive episode I experienced that year (still bitter that my BP got misdiagnosed as ADD for several years).

Heck, we could have used LISS funds to pay for our hotel bill when I had that 2 week stay in MN for my gigantic surgery, and the following year we could have used them to pay for the airplane tickets. Who knows what we could have used LISS funds for when I was itty bitty. The program was around in the 80s.

I was under the impression that LISS funds could only be used for children, but after looking up the program found that this is not the case. It is nice to know that if the program should ever get back on track (g-d forbid it is ever eliminated) it will be there for me should I need. Maybe one day I will have a job and buy a condo and, as I don't anticipate ever exceeding the income limit, I could dip into the LISS program to assist me in obtaining a universally designed kitchen :)

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

In your WRAP you're supposed to have a page where you write down what you're like when you're doing GREAT and another where you write down what you're like when you feel like crap. This way when I just feel ok I can go look at 'crappy Cheryl' (not official WRAP terminology) list and go, "WOW! I'm actually doing way better then I thought I was!" On the other side, when I do feel like crap I can go look at 'wonderful Cheryl' list and go "Cheryl you idiot! That is so much cooler then this. Dude, get off the couch..." (I don't really talk like that in real life... I'm going with humor...)

"So what are you like when you are well?" The facilitator asks the group 2 weeks ago

"This is going to sound odd, but the intent behind it makes sense. I'm a pain in the ass!"

I can't figure out how else to FREE OUR PEOPLE without being a pain in the ass, and let me tell you, I do an awful job of it when I'm depressed.

There's still time to DONATE! DO IT! NOW!

I'M WITH ARI!

In case you haven't heard, President Obama wants to appoint Ari Ne'eman, a young adult "on the spectrum" as he likes to label himself, to the National Council on Disability, a federal commission, but an annonymous senator has placed an indefinite hold on his confirmation. Ari's view's on autism are somewhat controversial, but as I wrote in an email to 2 people recently

I will always fight tooth and nail to support Ari's viewpoint. I find the treatment of autistic adults, pitted against each other on purpose it seems, is akin to the way things worked with slavery. The whole lighter skined/darker skined slaves thing. Ari fights for an inclusive society, he fights so that everyone can obtain the appropriate supports that they need, tailored to them, so that we can all have better lives. How can anyone fight against that? I agree with him that one way to move towards this is to stop differentiating types of autism.

So I guess I'm controversial too. Ari's views are so controversial that someone even started a hate blog that includes death threats (I've decided to refrain from linking). To read more on this saga, check out the recent NYT article. Remember when I went to the ASAN protest 6 months ago? I'm totally down with ASAN. (done with tangent).

So what can you do? WRITE YOUR SENATORS!!! Since we don't know who put the block on, we need to inundate all 100 senators with letters. I may even write the President a thank you note for sticking his neck out there. Here are the guidelines from the I'm with Ari facebook group (as usual)

1. Be heartfelt and honest

1.1 If you agree with Mr. Ne'eman, say why you agree and what you agree with. Nothing more, nothing less. It's about supporting the good work of another.

1.2 This is about why you think Mr. Ne'eman is a good choice. This is not about any other problems you see or any disagreements you have with anyone else.

2. Be brief and to the point

2.1 Members of the House of Representatives and the Senate are busy folks. Tell them what it is you want in as few words as possible while making yourself clear.

2.2 Stay focused. If you have a staff member on the phone, relate that you understand they are busy and merely would like the member of Congress to know that this is something people really do care about.

3. Say it to the right set of people

3.1 You can speak on behalf of yourself and yourself only (unless you have permission to speak on behalf of an organization)

3.2 You can only really make a difference with the Representatives (House and Senate) from your state.

4. Technical Details

4.1 Call BOTH the Washington DC office and the local office of BOTH the US Senators of your state (info can be found online for these phone numbers).

4.2 Request to speak with the advisor who handles matters concerning people with disabilities. Request someone call you back if nobody is there.

4.3 When making phone calls, get the name of the person you spoke to and remain upbeat and friendly - remember that the person on the other end works hard too and should be treated with respect regardless of your view of the member of Congress they work for.

4.4 Make it about your state or local area. Say why this matters for where you live. For instance, do you know how many people with disabilities live in your state? Is the Senator facing a tough election? Make it clear they should care about this issue in a friendly manner.

The people that have lived across from me for the last 2 months have a 4 year old autistic grandson and I often see them wearing their Autism Speaks shirts and cringe. I keep my mouth shut, telling myself they don't know any better, and I don't want to get in a fight with the neighbors. I'm thinking though of taping the NYT article to my door along with Sen Mikulski & Cardin's addresses. Am I being passive aggressive?

On Recovery

If you haven't noticed by now, I spend a lot of time thinking about words and what they mean and how they are used. On Our On operates Wellness & Recovery centers. I HATE those words, to me they bring forth an image of illness. But I've had nothing better for recovery. I make a point of saying I have "psyc issues," a "psychiatric disability," or a "psychiatric diagnosis," depending on the day and what I feel like, and stay far away from mental health/illness. I won't call CP a developmental disability (DD), not because I am offended by the term, but because I just feel it's too vague of a term to have any purposeful meaning. I like the label of consumer, although a lot of my friends despise it. I grapple with knowing when I am in a setting where I could get myself in trouble for not using people first language and when I can be comfortable and free to slip into "crip" and "spaz." I generally prefer shrink to therapist, although I am ok with psychiatrist--social worker sounds awkward and how many people know off hand what LCSW means?

The thing is, I like the concept of recovery, fully embrace the general meaning, and feel like I could be on the path to achieving it. It's just that I don't like being associated with the substance abuse world. I don't use DD because I feel the need to differentiate, same thing here. This lack of alternative terminology has left me feeling awkward.

BUT I'VE FINALLY GOT IT!

I've been spending a lot of time over the last 2 months or so thinking about my mom's cancer. She's approaching 10 years post-diagnosis, and well, had cancer for some time before diagnosis, so it's been 10+ years. She has had cancer every single day for 10+ years. Who has cancer for OVER A DECADE? People deal with cancer for long periods of time, but they go in and out of remission. Or they don't. They die. After a lot sooner then a decade. She's never had a remission.

Which brings me to the topic of remission vs recovery. People don't generally recover from or are cured of cancer. Doctors are very hesitant to use those words because of the high probability of a relapse or an occurrence of a secondary cancer stemming from the side effects of the chemo or what not that got you into remission from the primary cancer in the first place. They wait years and are very cautious.

So I've decided I'd like to say one day (whenever that is) that my bipolar is in remission*. It acknowledges the very real fact that my symptoms will come back, but that I am/have been symptom free for a significant period of time. Unlike cerebral palsy, I do believe that it is possible to manage bipolar to the point where my symptoms become dormant (I hope that when they do come back they don't reappear with the force of a volcano). It's something to strive for, to hope for, to confidently reach for. A challenging but attainable goal.

*I realize I'm contradicting myself when I say I'm trying to differentiate by not using DD or recovery, and then gravitate towards another word already associated with something else. But I still feel it's a clearer definition. Oh, and I'm still undecided on how I feel about the term "symptomatic."

4 H Therapeutic Riding

I googled this program which I am somewhat associated with to find out how long it takes to drive there from where I live (1hr-1.5hrs, ick) and found this video. Horses make me REALLY happy :-D

Kennedy Krieger Introduces I-Skate

I found out about this program a few weeks ago and this is the first chance I have to post. I am SO jealous. They say there is an age cut off of 21 and I am 25. My friends say lie and go for it. I can still pass for 19. They have extra wide ice skates that are supposedly wide enough to accommodate AFOs, which might keep my right ankle stable. I had trouble with that the one time I tried ice skating over 2 years ago (where does time go?). For more info go to www.i-skate.org Oh how it irks me when videos are not captioned!

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Here is a picture of me attempting to ice skate 2 years ago. Boy could I have used one of those walkers. The thing that I am using was designed for little kids, was not height adjustable as I imagine KKI's are, and was really hard to adapt to be able to use at 5'1". Oh and I was wearing hockey skates.

Another Odd Disability Thing

Today is my 25th birthday and I've been feeling for weeks like I should write some big "commemorating my life at the quarter century mark" post, but alas I've got nothing. I feel like the only thing I could write is a "look how much she's overcome" post. GAG ME. I refuse to do that.

So instead I will share a little antidote from my life. You see, I've started going grocery shopping on my birthday in recent years. GROCERY SHOPPING you wonder. Who would want to go grocery shopping on their birthday??? ME! Especially when it is Wegmans, one of my favorite places in the world, somewhere I only bother to trek to about 4 times a year.

I attribute my love of grocery stores, I guess, to back when I was about 3. My parents wanted me to walk, so they would carry me into the store, set me down right inside the door, and if I would cooperate and walk all the way to the back of the store where the bakery is, I would get a cookie. Just one. But that's plenty to motivate a 3yo and create a positive association to grocery stores.

So that's the story. Not a long one, but the story nonetheless. I was going to move my birthday this year, as I was doing nothing special, move it 3 weeks and celebrate it during the national action, but then I got the greatest gift of all--a local action this evening.

To end this post, here's another plug to donate. I still have $946 to go! I also have a lot of great posts coming up this month, so stay tuned. Below is my New Mobility article. I wish I was more pleased with it, but it is what it is.

Verbatum Article

It's All About Intentionality--Hurtful Words Part 2

Part 1

The second time I took psyc 403 [child psychology], my adjunct professor (a full time school psychologist who adopted a son years ago who has significant psychological disabilities) started in on how Drs are keeping premature babies alive earlier and earlier. In doing so they are taking advantage of parent's vulnerability, he says, for their own personal professional gain (so that they can publish the case study) and NOT looking out for the best interest of the child. He also believes that if there becomes prenatal testing for psychiatric disabilities it should become the norm to perform preimplantation genetic diagnosis. Society would be saving those babies from a life of constant suffering, not just physically, but because of how pervasive ableism (he didn't use that word) is in this society. Forget about working to change society, just kill off those people. Reintroduce eugenics [my interpretation, not his wording].

I was sitting in my chair in class that day... Offensive language can come in many forms and this is much more hurtful to me then calling me a cripple, invalid, spaz, retard, a wheelchair (what, am I not a person?).

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I am apparently having significant difficulty devising coping mechanisms for my psychiatric issues that are age appropriate. Coloring in class is not ok, but doodling on paper with a pen is ok. It's stupid I know, and I've bitched about it as recently as a week and a half ago when a friend said to me

"It's all about intentionally. If you come to class with markers it's obvious that your intention is to color, but if you come to class with a pen and a few extra pieces of paper, your intention is to take notes. There's a fine line and it's stupid."

My email the next day (quoted above), coupled with her words, gave me a lightbulb moment. This is the best way to explain how words can be both hurtful and empowering. It's the intentionality behind them.

As a non-disability example, the year before I transferred the students in the GLBTQ club on campus voted to change their name to the Queer Student Union. I don't know what it was before. There was apparently a lot of backlash from that decision and the university almost banned the name change.

My personal examples are that I love referring to myself as a crip and a spaz, will say things like "I have a few screws loose in my head, but that's ok because I have a spare one stored in my ankle (surgery) in case one falls out" and something like "I was crazy busy--wait, I'm crazy all the time." Recently my mom called me "a nut." My reply? "We already knew I was certifiably nuts." Therese agrees (also read the description of that one and look @ 1:14 of this one first).

If someone implies that my life is less valuable or I'm out and about and hear someone call someone a spaz as a put down I get an instant pit in my stomach. I try hard to explain to people why using the r-word is just as hurtful as calling someone the n-word or saying "that's so gay." "I'm not calling a person a r----d, I'm calling a thing r----ed," I get often. It doesn't matter. "that's so gay" is often used to describe a thing, not a person, but somehow people have been educated that this is not ok.

Using words in their original intentionality does not have a hurtful sting. But it's gotten to the point where people don't even know what it is, so they can't use them this way. Spaz comes from spastic cerebral palsy, my official diagnosis since the age of one. Mental retardation (now intellectual disability) used to be a pure medical diagnosis before it became a put down. Before that people were referred to as feeble-minded. Gay used to mean happy. It's just that these words are no longer used with their original intentionality, things might be fine if they were.

Therese says that "angles can fly because they take themselves lightly." I think that my use of seemingly derogatory words (with their original intentionality) demonstrates that I am comfortable with who I am. The start of my use of these words coincided with the beginning of my journey to finally accept the impact of my limitations in their entirety. That is a GOOD thing. I must take myself lightly. My very survival depends on it. I might possibly be the most happy I have ever been and my use of these words definitely had a positive impact on this, as odd as that may sound. Using these words signifies that I've taken ownership of who I am and instead of slinking away because I internalize stigma. I have taken ownership of the hurt and turned it around to use as a source of empowerment. I am a PROUD crip.

My intentionality behind frequently using "hurtful" words in everyday conversation is to illustrate my light-heartedness, my comfortableness, that my disabilities are no big deal to me. That's so different.

On Depression & Friendship

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. It seems good, from the very little I've actually read of it, and could be something I'd consider buying if I didn't think it would probably be very close to WRAP.

This last time though I couldn't find a copy. What I did find, that I'd never seen before (apparently it just came out in Feb), was the bipolar workbook for teens from the same series. I took a closer look at this one, at least the first 1/4 of it, and something really stood out to me. There was this section on identifying your inner/outer circles; who knows you have BP, who doesn't, I think you get it. An important thing to do. Then the book asks you to take a closer look at those in the inner most circle and jot things down that they can do to help support you. There were examples above the blank lines, and one of them seemed to speak just to me. "Ask my best friend to keep calling me even if I do not answer the phone."

This situation wasn't something I was planning on writing about, but I feel called to now (pun not intended). Now why would someone do that? Especially when I decided not to answer the phone for 2 months. I'd stop calling too if I were them. Me being me, and being on this side of things, I know that the best thing to do is to go over and bang on the door until the depressed person finally answers and then force them in the shower and drag them to the mall or the diner or somewhere against their will. I'll probably thank you for it later even though I'm most likely cursing you out under my breath the entire time. Calling's not going to work ever when you're too embarrassed to answer the phone.

I'm much more likely to answer the door then the phone, however even that's not a guarantee. I might actually be in the shower for my once weekly shower, or at my weekly shrink appt, or OOO (the only places I was going), or having noticed you calling from my caller ID, I may just be laying in bed watching Grey's DVDs purposely ignoring you because I just. can't. get. out. of. bed. or I am just too embarrassed to talk to you. What do you do then, person standing at my door? You find the person who is authorized to use my emergency key in such instances (I thought this through after this latest episode). But geez, that's A LOT of work for one person to do, and I don't expect anyone to want to go this far.

Therese talks about a friend "who is so wounded that they can't reciprocate the love." Well what if you're the one who is wounded? What if you're the one who can't ever seem to muster up the energy to empower others? Therese seems to imply that you should drop all those friends and run the other way before they suck you dry, which is in direct opposition to the viewpoint above. I don't think she meant it that way; I'm probably overly internalizing what she said due to the fact that I feel pretty wounded all the time and I've always had trouble making/keeping friends. It's hard to know that some people have had friends since infancy (not the norm, I know) but 95% of the friends I have I've known just 10 months.

I only had friends that went back 4 years (better enough to satisfy me and make me feel less like a loser) and I recently dropped them and ran. I wonder how much longer my mourning is going to last? I don't agree that friendships are required to empower you 100% of the time, but these friends made me feel pretty horrible about myself pretty often. They had boundary issues. I put up with them because I didn't know how to make other friends, I recognized that they have their own wounds (thus they don't know how to be a good friend any better then I do), and part of what they did that made me feel so bad I think they were doing because they cared.

WRAP started 3 Fridays ago, and there's something in the first powerpoint that spoke to me too. "The most valuable thing a supporter can do for you (or you can do for them) is to LISTEN. A good supporter knows that unasked for advice, criticism and judgements won't help and will probably make the other person feel worse."

Man they made me feel like crap all the time, simply because they do not know when to SHUT UP! Apparently this is a pretty global problem, or it wouldn't have made it into the WRAP powerpoint. Just because I don't choose to make the same choices you would make in dealing with my disabilities doesn't mean that they are wrong, and if they are wrong, I already know this and giving me frequent LONG tirades doesn't change this fact, nor will it help me to make a better choice the next time. I know you think it will, but really, it WON'T! All it did was make me isolate more because I was ashamed I wasn't capable of measuring up to my friends.

So I found new friends. I found new friends that are wounded just like I am and just like my old friends are. The difference? Everyone recognizes that we are just as flawed as everyone else and no one thinks or acts as if they are better then. That empowers me daily, to feel just as valued instead of constantly less valued. So the question is, why do I still mourn my old friends so much now that I've found better and know that I deserve better? I guess it's because I know, as I've said, that they were judgmental because they cared and because they don't know any better. I wouldn't want friends to drop me because I'm emotionally stunted, so I guess I feel like a hypocrite.