Another Round Up

ETA: An old post of mine, an old research paper to be exact, Tiny Tims & Supercrips, was quoted here the other day, although in an effort to change the link to this blog from my old one, it no longer works. I still think it's cool, and almost missed it, except that I was reading The Goldfish.

First, I was cleaning out some very old email and found this:

The email said that this was done with a typewriter and that the artist has CP.

Next, I don't remember emailing this poem to someone, or even having read it 2 years ago, but apparently I did. It was recited at the disability pride parade, and is good.

Third, sorry Joe, you non-blogger you, you're off my blog roll because I've added Georgina Dollface (swapped one LP for another... huh... didn't notice that at first) She commented on this blog once, and I must have clicked on her blog then, but somehow I only just now, after doing so again 10mos later, noticed how great she is. You should blog more Joe.

If you want to take part in an amazing love story (I feel like a voyeur reading this blog) check out To the Other Side of Dreaming. I took the last of my disaboom blogs off of my blog roll when I added this amazing blog yesterday.

Fourth, Attila recently wrote about her collaborative craft studio, which employes disabled adults and caregivers / relatives. They make Christmas ornaments, that are the most gorgeous I have ever seen, and I think stuff for Easter too. If I wasn't Jewish I'd have ordered a bunch already.

Fifth, here's another great post from Therese. I'm sorry if you don't like dark humor, but I do.

Lastly, here's 2 more great stories from Joe Shapiro and NPR:

Click here for transcript
A separate story that ran earlier that same day, but wouldn't embed is A New Nursing Home Population: The Young

You Get Proud by Practicing

by Laura Hershey
RIP

If you are not proud
For who you are, for what you say, for how you look;
If every time you stop
To think of yourself, you do not see yourself glowing
With golden light; do not, therefore, give up on yourself.
You can get proud.

You do not need
A better body, a purer spirit, or a Ph.D.
To be proud.
You do not need
A lot of money, a handsome boyfriend, or a nice car.
You do not need
To be able to walk, or see, or hear,
Or use big, complicated words,
Or do any of those things that you just can’t do
To be proud. A caseworker
Cannot make you proud,
Or a doctor.
You only need more practice.
You get proud by practicing.

There are many many ways to get proud.
You can try riding a horse, or skiing on one leg,
Or playing guitar,
And do well or not so well,
And be glad you tried
Either way.
You can show
Something you’ve made
To someone you respect
And be happy with it no matter
What they say.
You can say
What you think, though you know
Other people do not think the same way, and you can
keep saying it, even if they tell you
You are crazy.

You can add your voice
All night to the voices
Of a hundred and fifty others
In a circle
Around a jailhouse
Where your brothers and sisters are being held
For blocking buses with no lifts,
Or you can be one of the ones
Inside the jailhouse,
Knowing of the circle outside.
You can speak your love
To a friend
Without fear.
You can find someone who will listen to you
Without judging you or doubting you or being
Afraid of you
And let you hear yourself perhaps
For the very first time.
These are all ways
Of getting proud.
None of them
Are easy, but all of them
Are possible. You can do all of these things,
Or just one of them again and again.
You get proud
By practicing.

Power makes you proud, and power
Comes in many fine forms
Supple and rich as butterfly wings.
It is music
when you practice opening your mouth
And liking what you hear
Because it is the sound of your own
True voice.

It is sunlight
When you practice seeing
Strength and beauty in everyone,
Including yourself.
It is dance
when you practice knowing
That what you do
And the way you do it
Is the right way for you
And cannot be called wrong.
All these hold
More power than weapons or money
Or lies.
All these practices bring power, and power
Makes you proud.
You get proud
By practicing.

Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.
Just practice,
Practice until you get proud, and once you are proud,
Keep practicing so you won’t forget.
You get proud
By practicing.

Wood's Rules: How Do I Get The Most Out of My Therapy?

I don't know how I got to Virginia Wood's blog. I'm a public follower but she'll never be on my blog roll. She doesn't post frequently enough. As you may have guessed, the main reason I take people off my blog roll (after I find a replacement) is failure to post. Anyway, I never read the blogs I follow that are not on my blog roll, I just don't feel like scrolling through my dashboard. So, I don't know what brought me to check out her blog again back in August, but I did and noticed that she links to a very opinionated practice website. I mean, look at it, check out the FAQs-- the one about using insurance to cover therapy. Most people can not afford to keep insurance out of the equation, even if they are using out of network benefits, which in my case are good thank god. Why make people feel uncomfortable about it? At $80-$150 a pop depending on qualifications and geographic location, if you have a serious mental illness, you'll go bankrupt.

Totally going off on a tangent... The point of this post is that I looked around her site (I find it tacky and distasteful that she continually links to her facebook fan page) and found a list of how to benefit most from therapy. "This is really good," I thought. "I should blog about it." And then I forgot. Until last Friday that is, when Therese posted Sue Atkinson's 9 rules for surviving therapy. These lists are completely different and I think it's beneficial to look at them both.

• Talk
• Talk a lot
• Talk some more

I went to a therapist for awhile and sat there and stared at him ALOT. We stared at each other, and then I'd look at him and say "WHAT," if he didn't decide to start opening his mail or walk over to check his email while he waited for me to say something. Sometimes he would tell me the weather report. Often he could tell that I was about to say "WHAT" and would say it first.

I was rather surprised when I started talking to this shrink the 1st appointment, even though I couldn't stand her at the time. It felt WEIRD not to just stare at her, but then again, she isn't an asshole. I guess that was the 1st good sign -- me talking more then she does. That is, after all, the point.

• Keep a journal [or a blog AND every once in awhile go back and look at old stuff, reviewing both the new posts and revelations about old posts with your shrink]

Recently a friend asked me if I write poetry and I said "Not that much, but I did write this, back when I was so messed up I had therapy 2X a week." The catalyst for writing it was something my psychiatrist had asked me earlier the day I wrote it that I hadn't been able to articulate in her office. I just needed another half hour to chew it over, and I was able to give a much more extensive answer then I ever could have done in her office. She was immensely grateful I took the time...

• Write down your dreams

I know everyone dreams every night, but is it weird that I only ever remember my nightmares? That I don't write down. I can remember that I was so freaked out about getting somewhere on time (something that is hard for me) that I woke up in a panic 2hrs early...

• Don't drink or drug 24 hours before or after your session--or better yet, stop using altogether

Why is it that all my treating professionals think it is wrong to use alcohol as an alternative treatment for pain management?

• Attend regularly--especially when you don't want to

That's when I make sure that I go. Even if my apathy makes me late. Not that I think it does me any good... I'm too depressed to get anything out of the actual session. However, having a reason to shower, get dressed, get out of bed, get some fresh air, does me a world of good.

• Pay attention to, and talk about, your feelings about your therapist and your therapy. Or, from the other list, even if after ten agonizing sessions you still think that the therapist hates your guts, it may be worth going on, but tell him or her.

I've never had a shrink that hated my guts, but I have had a few where I hated their guts. I'm batting 1 out of 4 in the bad shrink department (out of 8 total). How do you know if a therapist is truly bad (3 out of the 4) or if you do just have to really stick things out (the 1 out of the 4)? I don't know...

To be continued...

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

The Language of Us and Them by Mayer Shewin

My friend pointed me to this poem after reading my last post. "Perseverate..." HAHA... I went 25 years without knowing that word and now look--I never would have found this poem! It seems to be targeted so precisely at autistics and was written (I think) by someone not on the spectrum. Does anyone know if Mayer Shewin is autistic? Anyway, it is a GREAT poem, and without further ado

THE LANGUAGE OF US & THEM

We like things
They fixate on objects

We try to make friends
They display attention seeking behavior

We take breaks
They display off task behavior

We stand up for ourselves

They are non-compliant

We have hobbies
They self-stim

We choose our friends wisely
They display poor peer socialization

We persevere
They perseverate

We like people
They have dependencies on people

We go for a walk
They run away

We insist
They tantrum

We change our minds
They are disoriented and have short attention spans

We have talents
They have splinter skills

We are human
They are . . . ?

I Wouldn't Be Me If I Didn't Have This Funny Brain

A crip friend of mine is reading Waist High in the World by Nancy Mairs (which looks like it's on a good sale at Amazon). I'd heard of it; it's been on my recommended list for years. She came to me with a simple quote. Something to the effect of

I wouldn't be me if I didn't have MS.

Wow, she thought. Profound. Seriously, I thought? You're XX age (I won't out you, sorry I'm implying you're old), you've been a crip most of your life, and this is the first you're pondering this? All through my life people have asked me "If you could take a pill and not have CP, would you do it?"

"No," I'd say to a shocked face. "I don't know any different and I wouldn't be me. And I get out of lines at amusement parks." I'm guessing I was 7 about then.

Last week was the first week of class. The professor asked a question and as usual someone answered "at risk populations."

"What does that mean?" the professor prodded.

Teenagers, people in poverty. "Everyone, in this economy," I answered. "Everyone is at risk of being homeless, at risk of not being able to pay their mortgage, because everyone is at risk of loosing their job."

Then I raised my hand again. "To use a real life example for me, I'm friends with a lot of people with pretty involved disabilities who are at risk of being stranded, of having serious problems because the developmental disabilities adminadstration has taken huge budget cuts and their attendant services are being cut."

"Can you explain what attendant services are?" she asked. "I'm not sure everyone knows what that means." Uh... I thought in my head. How do I explain what a Medicaid HCBS waiver is in a sentence? But I did.

Wow, I thought in my head. I wouldn't be me...

I Wouldn't Be Me If I Didn't Have This Funny Brain

I wouldn't be me if I didn't have this funny brain

I wouldn't be me
if I was born breathing
and if I hadn't had a brain bleed
and I didn't have CP

I would look just like everyone else
and wouldn't catch people's attention
I could blend in with the crowd

I would think just like everyone else
and talk just like everyone else
and I wouldn't have to speak up to be heard

I wouldn't be tired all the time
but then small things wouldn't be an accomplishment
getting to class on time would no longer be a celebration
and celebrations are fun

I wouldn't be me
if I didn't have that genetic variation
that lead to me having psychological issues

I wouldn't be a writer
and I wouldn't be passionate
because I wouldn't have that extra energy
passion brings a rush
and I like that rush

I wouldn't break barriers if I didn't have both bipolar and cerebral palsy
because who has 2 disabilities?
a psychological and a physical
a visible and an invisible
I do

and it makes me proud
that I can use them to change the world
because I DO stand out in a crowd
and I have had to learn to stand up and make myself heard
To try harder when someone tells me no
and learn that no does not mean no

I am odd
and I am different
I am an activist
and most days I like it
everyone has an off day

who would I be
if I had grown up playing soccer
and had not been forced by necessity to navigate the public bus
and had not had extra hassles
and had not had to learn to speak up to be heard

I would not be a writer
and I would not be an activist
and I might not have compassion
and the passion to change the world

if I did not have CP
and if I was not bipolar
I wouldn't be me
and I can't imagine
not having passion and compassion
and not being me

I Am...

Lazy

Tired

Loud

Obnoxious

Annoying

Disorganized

Stubborn

Explosive

Anxious

Fearful

Passionate

Thankful

Introspective

Multidimensional

Creative

Fun

A writer

A student

An artist

A friend

A daughter

A woman

An uppity intellectual activist crip

ME!!!

To participate in next weeks disability blog carnival, go over to the blog carnival page.

I'm Tired

I’m tired of being tired
I’m tired of having to fight all the time
I’m tired of having to struggle
I’m tired of not being in control
I’m tired of trying to be in control
I’m tired of being patronized
I’m tired of having to cover my bases
I’m conflicted and I’m tired of that
I’m pissed off

I want to not care but I have to care
Having to care is tiring
But who would care for me?
I wish I wasn’t so damn smart
I feel like I’m starting to “get it”
But then I have to do something about “it”
Doing something makes me tired
I can’t not do something
So then what do I do?

I want to and don’t want to be an adult
I hate my mom for making me so aggressive
It takes too much effort to be happy
That of course makes me tired
I need a househusband

I’m tired of being behind
Catching up makes me tired
Life is so much harder being tired all the time
I’m tired of being driven
I’m tired of these god damn meds

Life is so much easier when you don’t focus on how you function
Life is so much easier when you’re on an even playing field
Having to measure up to others is exhausting
How can I possibly be better then everyone else when I’m inherently inferior to begin with?

Being tired just plain sucks because it invades my life
I HATE being tired
But if I’ve always been tired why does it bother me so much?
Because being tired holds me back
And being tired potentially causes physical pain
And being utterly exhausted is the only thing that is guaranteed to make me cry

But I don’t cry
I laugh
But when I’m this tired I can’t laugh
I can’t do anything but cry
Who wants to cry all the time?
For that matter who wants to be tired all the time?

I don’t want to be tired all the time
But if I wasn’t tired that would be giving up
I can’t give up
Because what would happen then?
What would that say about me?
Giving in is absolutely not an option
Isn’t it funny how not giving in but being realistic seem so diametrically opposed?

Man I wish I had all the answers
Having answers saves energy
To be captain obvious, saving energy means I’m not as tired
Not being tired is good
It is the Holy Grail

Not being tired is like a mirage in the middle of a desert island
But it isn’t going to happen
And again, that just totally sucks
It makes me want to cry—
Being stuck between a rock and a hard place with no way out other then flat out giving up
Which I can’t do