My National Pancake Day Experiance

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

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

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

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

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

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

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

How to Survive Therapy: Tips 9-16 Cheryl Style

9) If you're in the kind of therapeutic relationship where the therapist generally runs the show, decides what to talk about, and you just go along with it, BUT one week you have something you need to say that you're sure won't be on the agenda...

Call / text / email them, whatever their preferred method, enough in advance that you're SURE they saw it, and simply say "I have something specific I want to talk about this week." They'll be so curious about what it is, and so shocked at your unusual behavior that they'll ask you what it is first thing and you'll have plenty of time to talk.

10) Use students with CAUTION.

They're cheaper (or sometimes free) but the quality you get is iffy. The first student I saw was clueless. The second was GREAT! [Not to say that this hasn't happened to me with licensed professionals also] The other thing you have to consider is that you'll end up having to get a new therapist every year or every other year. Are you OK with explaining your history over and over?

11) If a therapist thinks that antagonizing you / pushing your buttons is good therapeutic motivation, chew that one over.

Maybe it is, but maybe they're reinforcing negative behaviors you'd like to curb.

12) If a therapist utters the words "people like you," or "those people," repeatedly, or even just once, FIND ANOTHER THERAPIST!

Back to the putting people in boxes thing, but HOW ABLEIST!!!! ICK! And PATRONIZING! I'm not a diagnosis, I'M A PERSON! G-d damn it! There is no person like me! Treat me! Help me! NOT my diagnosis! Can you tell I have baggage???

If your reading this blog chances are you have some grasp of the medical, social, charity models of disability. Way to medicalize! Not everyone knows disability theory of course, but some people just innately know NOT to medicalize people. FIND THEM!

13) Take your medication. Or don't. But then try yoga or something...

My point in this is not to be all, bow down to big pharma. The idea of being forcibly medicated sends chills down my spine. My point is that you need something to put you / keep you in balance, be it a mood stabilizer or an acupuncturist. Therapy works best in conjunction with things. Someone I know swears by his chiropractor, another by transcendental meditation, and another swims 10hrs / week. Do it with pills or without. Whatever floats your boat.

Feel like your treatment team is being too forceful, intentionally giving you a one sided picture of things, (especially of DANGEROUS things like ECT), or is even just the tinyist bit vague? Antagonize them. One pdoc suggested maybe I try a medication that, after searching the interwebs, I discovered has a possible side affect of muscle spasm with pain. I thought I was the crazy one. He's crazy for even considering this medication for someone with a diagnosis of spastic CP.

14) JOIN A PEER SUPPORT GROUP!

In addition to the yoga, time with furry creatures (a favorite of mine), or whatnot.

Who has the money to go to 6hrs of therapy a week? What therapist wants to see you everyday of the week? Unfortunately, they won't let you stay past an hr. Sometimes you need more then an hour in one sitting. Try searching for a DBSA affiliated group. My group is open 2.5hrs twice a week for unstructured time, followed by a 90min support group both days AND is open a 3rd day for a 2hr WRAP session. It'll get you through hopefully... My therapist might be more grateful then I am...

Don't be nervous to find out that there aren't any licensed professionals present at a peer run support group. "They're" not as crazy as you think, and can share more honest stories then a professional can. Plus, peers don't tend to medicalize.

15) If your therapist can't coordinate with your other treating professionals, DITCH THEM!

I'm not even talking about keeping in touch with my botox doc aka pain doc aka physiatrist (the technical term) because that is so complicated (Um, NOT! See #2). Let's start with the most basic and work up to that one. I once had a therapist and a pdoc who had never heard of each other, nor made any attempt to contact each other. Now if that isn't essential, I don't know what is...

16) Lastly, if you happen to find someone who is email savvy, is actually interested in what you have to say, DOESN'T medicalize or make you want to punch a wall, will willingly coordinate with other treating professionals, AND is open to your ideas for alternative treatments, HOLD ONTO THEM. They're a rare breed...

A Disabled Manifesto

I thought this would be appropriate to post on the first day of the latest national action. ENJOY! Photo is from the Fall 2008 DUH CITY action and is copyright ADAPT. It doesn't have much to do with the post other then I haven't found a reason to post it yet & I liken the kids in the DUH CITY jail to us crips being imprisoned in TAB imposed limitations.

A DISABLED MANIFESTO

By John R. Woodward, M.S.W. Center for Independent Living of North Florida, Inc

We proclaim that we are born free and equal human beings; that our disabilities are limitations only, and that our identity does not derive from being disabled.

We proclaim that we have the same value as people who are not disabled, and we reject any scheme of labeling or classifying us that encourages people to think of us as having diminished value.

We reject the idea that institutions must be created to"care" for us, and proclaim that these institutions have been used to "manage" us in ways that non-disabled people are not expected to accept. We particularly denounce institutions whose purpose is to punish us for being disabled, or to confine us for the convenience of others.

We reject the notion that we need "experts," to tell ushow to live, especially experts from the able-bodied world. We are not diagnoses in need of a cure or cases to be closed. We are human, with human dreams and ambitions.

We deny that images of disability are appropriatemetaphors for incompetence, stupidity, ugliness or weakness.

We are aware that as people with disabilities, we have been considered objects of charity and we have been considered commodities. We are neither. We reject charitable enterprises that exploit our lifestyle to titillate others, and which propose to establish the rules by which we must live without our participation. We also reject businesses that use us as "warm bodies" to provide a passive market for their services, again laying down rules by which we must live for their profit. We recognize that the lines between charities and businesses are blurred in the disability industry, and we do not accept services from either if their essential function is to exploit us.

We assert our rights of self-determination in the face ofrules, eligibility criteria, regulations, customs, laws or other barriers, and we pledge not to allow any authority or institution to deprive us of our freedom of choice.

Finally, we assert that any service we need, from specialized teaching to personal care, can be provided to us in the community among our non-disabled peers. Segregated institutions are not necessary to serve us, and they have been the greatest source of our oppression, especially when they have been run by able-bodied people without our participation.

All human beings are more alike than we are different. We recognize that when we assert this belief we will find ourselves in conflict with regressive institutions and their supporters, some of whom may be disabled themselves. We do not expect thousands of years of stereotyping to dissipate quickly. We commit ourselves and those who come after us to challenge our oppression on every level until we are allowed to be fully human and assert our individuality ahead of our disability.

I Don't Think I've Ever Posted the Credo for Support

As I was posting yesterday's poem I remembered the credo for support that was brought to my attention a few years ago. The two poems go hand in hand.

Throughout history, people with physical and mental disabilities have been abandoned at birth, banished from society, used as court jesters, drowned and burned during The Inquisition, gassed in Nazi Germany, and still continue to be segregated, institutionalized, tortured in the name of behavior management, abused, raped, euthanized, and murdered. Now, for the first time, people with disabilities are taking their rightful place as fully contributing citizens. The danger is that we will respond with remediation and benevolence rather than equity and respect. And so, we offer you

A Credo for Support

Do Not see my disability as the problem.

Recognize that my disability is an attribute.

Do Not see my disability as a deficit.

It is you who see me as deviant and helpless.

Do Not try to fix me because I am not broken.

Support me. I can make my

contribution to the community in my own way.

Do Not see me as your client.

I am your fellow citizen.

See me as your neighbour.

Remember, none of us can be self-sufficient.

Do Not try to modify my behavior.

Be still & listen. What you define as

inappropriate may be my attempt to

communicate with you in the only way I can.

Do Not try to change me, you have no right.

Help me learn what I want to know.

Do Not hide your uncertainty behind "professional" distance.

Be a person who listens and does not take my struggle away from me by trying to make it all better.

Do Not use theories and strategies on me.

Be with me.

And when we struggle with each other, let that give rise to self-reflection.

Do Not try to control me. I have a right to my power as a person.

What you call non-compliance or manipulation may actually be the only way I can exert some control over my life.

Do Not teach me to be obedient, submissive and polite.

I need to feel entitled to say No if I am to protect myself.

Do Not be charitable towards me.

The last thing the world needs is another Jerry Lewis.

Do Not try to be my friend. I deserve more than that.

Get to know me, we may become friends.

Do Not help me, even if it does make you feel good.

Ask me if I need your help.

Let me show you how you can assist me.

Do Not admire me.

A desire to live a full life does not warrant adoration.

Respect me, for respect presumes equality.

Do not tell, correct, and lead.

Listen, support, and follow.

Do not work on me.

Work with me!

In Memory of Tracy Latimore

(A Credo of Support – Written by Norman Kunc and Emma Van der Klift © 1995).

To watch the videos-

1. Author reading: http://www.youtube.com/watch?v=SKCxwDF-SrI

2. With People First/people with disabilities talking: http://www.youtube.com/watch?v=wunHDfZFxXw

I'm in a Happy/Sad Kinda Mood

[image descriptions: greek happy/sad masks in bright colors. Also, all happy/sads have a happy or sad face as a bullet]

And no, I'm not in the middle of a mixed state right now (I'm not sure if I've ever had one of those...). It's just one of those days. And hey--why not? Today is designated happy/sad day so my mood is rather applicable.

You see, I'm a member of the ΙΓ Chapter of the national co-ed community service fraternity ΑΦΩ (that's the iota gamma chapter of alpha phi omega and yes, I'm a girl, and yes I'm a brother in a fraternity). One of our chapter's founding fathers decided that at the end of every meeting after it had been formally adjourned we would pass around a container and donate our loose change--not to our chapter, but to a charity (we're a community service fraternity after all). It's our Happy/Sad Change. We're supposed to say one thing we're either happy or sad about from the last and/or upcomming week for each piece of change we put in. In reality sometimes someone only has 1 quarter and says 5 things or puts in 3 dimes and 5 pennies and says 1. But whatever, the intent is still there.

Where is the money donated you ask? Well for a few years we had the same president and she was a counsleor every summer at Camp Sertoma (now a special ed teacher working on her PhD) in Harrisburg, PA, so our money went to camper scholarships. Then we had a brother pass away from pulmonary hypertenshion, so our money went to the Pulmonary Hypertension Association for a year. If it was up to me I would have kept it that way. Last year we never really picked "a place." We just gave smaller amounts of money to whatever our next event was, such as the Leukemia & Lymphoma S0ciety's Light the Night Walk and the Polar Bear Plunge. This year? Well this year, I'm not sure if we decided yet, so I'm going to go to the meeting (our 1st of the semester in an hr &a half) and find out. If not, I want to see if people will agree to donate the year's change to Maryland ADAPT. I'm going to make sure not to paint us out to be liberal extremests because we could sure use the money at the moment, even if we are on hiatus in between leadership.

Anyway, I'm kind of rambling and getting away from the point of this post. The point of the post is that I'm having a happy/sad kind of day, conveniently on happy/sad day, and I thought I'd list my happy sad things. My list is long today and people will give me the evil eye if I list everything later. We try to keep it short as we have to go through like 2o and people want to get out of there. Maybe every Sunday will be happy/sad day here in addition to Thankful Thursday? I'll see how I feel. Maybe I'm boring everyone? Maybe nobody cares? (*sigh* I'm rambling again...)

I'm happy because I think I'm finally getting myself an SSRI!!! I've only been begging for 1 for the last year, but hey, I don't have an MSW (yet), PhD or MD so I don't know squat...

I'm sad because I'm having nightmares about not having enough meds and losing my mind and having to go to the hospital (which in real life is never going to happen)

I'm happy because it is 64 degrees here in the middle of Feburary


I'm sad because it is 64 degrees and I have been sitting in the middle of the library for the last few hrs

I'm happy because I love racing somewhere fast in my chair on gorgous days

I'm sad because if I'm going to be sitting in the library on a beautiful Sunday afternoon I should be doing homework, but instead I'm sitting here blogging and getting nothing done

I'm sad because Friday night I took way to many sleepy causing drugs and slept 18hrs straight. I missed out on yesterday's gorgous day too... *whine*

I'm happy because we're going to have another day in the 60's later in the week and I'll have a 2nd chance at being outside

I'm sad because I left my cell phone at my best friends' apt Thursday night and I still haven't gotten it back

I'm happy because my paratransit right was right on time Thursday night which was why I left it there. I was running out the door and left it on the couch because they only wait 5mins and I didn't want them to leave me

See that's a lot of happy/sad things. WAY too much for later. Want to join me and make Sunday official happy/sad day? Post a list on your blog and then leave a link in the comments here...