Becoming Proud and Powerful

I had most of a long post on spasticity done for today when it got erased. So here's a video, because I don't have time to write it again.

LOUD, PROUD, AND PASSIONATE

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.

A Guest Post on Seclusion & Restraint

My friend wrote this recently and wanted me to share her experiences in order to bring greater awareness about seclusion and restraint. She was pretty much incarcerated in a psych hospital for a year over 2 decades ago. You would hope things were better, wouldn't you? But things like this still go on in developed nations today.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

She couldn’t comprehend the hospital’s rules. She went into her bedroom to escape the racket of people crackling, shoes squeaking, Bob Barker barking from the T.V. set, and the fax shrilly ringing. The noise hurt her ears. The next thing she knew a crowd of men stormed her room. Pinning her limbs behind her back they carried her kicking and screaming to a dirty, barren room. Unceremoniously they dumped her on a gym mat, rushed out and locked the door.

She was bewildered as to why they would play a trick on her. She panicked even more because the walls were closing in on her. Banging on the door she screamed in vain to be freed.

She thought they wanted her to do gymnastics on the gym mat. After several handsprings she found instead the men surged back in. She fought them tooth and nail, but was overpowered. They forced her on a table and tied her in four point restraints. Outnumbered, but not defeated she escaped twice, shouting gleefully she was the great Houdini reincarnate. She thought surely her cleverness would win her release. Each time they tied the leather tighter until she was truly trapped.

She thought that if she peed on herself they would set her free. They just took her gown and underwear away. She laid naked and spread eagle for all to see.

After a time her terror grew so great that she forgot where she was. She forgot she was in restraints.

A great epidemic had swept the nation. She was contagious and in isolation, paralyzed and dying, in desperate need of someone to hold her hand and comfort her, to tell her she was not alone. A worried nurse peeked in the window in the door, but didn’t stop. Because of the epidemic the staff shortage was severe. They too were dying.

When she passed her soul entered a soft green space. She watched it shine and ascend toward Heaven. Before entering Heaven’s gate her soul was examined and found wanting. She crashed into the depths of Hell.

Later her doctor came to visit. She stretched her hand as far as she could reach to touch his hand. He stepped back quickly so as not to touch her. She hurt.

Three weeks later she left seclusion. The other patients were afraid of her. Her moans and screams of pain had echoed through the halls at night and sounded animal, not human.

I wish someone would have thought to hold my hand.

I Have Cerebral Palsy...

[image description: a green rectangle with the words I have cerebral palsy... cerebral does not have me, a green cerebral palsy awareness ribbon, and one of those green awareness bracelets. Did you know that green is also the awareness color for both organ donation and save Darfur.]

A few weeks ago I saw this clipart as the footer on someone's blog. I will not say who, as I do not want them to feel bad. Anyway, I've seen that ribbon icon on more than 1 blog. The ribbon has always made me feel uneasy, but this clipart even more so. It's those words, "I have cerebral palsy... cerebral palsy does not have me." I almost had a pit in my stomach when I saw this. You ever get that feeling and you just don't know why? Well I decided to think it over and to my surprise, it didn't take long to figure it out.

First there is that ribbon. What are ribbons associated with? If I polled 100 people I'm sure the top 2 answers would be AIDS and breast cancer. Following along would also be a whole long list of DISEASES (although somehow I don't mind ADAPT's orange ribbon [left]. I've fully embraced the orange). By associating CP with an awareness ribbon we are conceptualizing it w/in the context of the medical model, and I REFUSE TO BE MEDICALIZED. This is one reason why autism advocates detest that horrid puzzle ribbon. Even when I go for my semiannual botox appointments I cringe at the word patient. My doctor works in a hospital even. doctor + hospital = patient (did you know that it gets billed to insurance under a code for outpatient surgery. 7 injections do not equal surgery) I know that; but patient is up there on my list of most damaging words, along with inspiration, special, the r-word, and wheelchair bound. And those bracelets, when the first ones came out they were for testicular cancer. Ick.

Then there are those words, "I have cerebral palsy... cerebral palsy does not have me." Cerebral palsy DOES have me (so does bipolar) and that is something I take much pride in. It took me a very long time to get to this point where I am so comfortable with it, but I would not be who I am if I did not have disabilities and I DO NOT WANT MY IDENTITY MARGINALIZED. By saying this you are implying that I am supposed to push one of the biggest parts of me aside, and I just don't see how this can be done. There would be no Cheryl were it not for my diagnoses (there I go medicalizing). I know what the phrase is supposed to mean. See me as a person, interact with me as a person. I am not wheelchairs and orthotics, but these things are parts of me. I want you to see, interact with, embrace the sum total of my existence in it's entirety, and that does in fact include CP and BP. Don't push them aside, think of them as part of the package deal.

*off my soapbox*

Just the Story For Now...

and the commentary later. I didn't get a soundbite (wasn't expecting to) but you can see me at 1:29. From ABC 7 and News Channel 8 in DC:

Autism Walk on National Mall Stirs Controversy

WASHINGTON - Thousands of people converged on the National Mall Saturday for a great cause -- fighting autism.

Several protesters, many of whom also fall on the autism spectrum, used the annual "Walk Now for Autism" event to point out the flaws with the event sponsor.

Michelle Parris came out the Mall ready to walk 2.5 miles for her son Miles. "I just want other people to not have to deal with the same difficulties that my son has dealt with," she said. "If there's a way that we can end it that would be great."

Her cause, along with thousands of others, is for autism, a neurobiological disorder that affects one in 150 children.

"My little boy who turns 8 in two weeks is mildly autistic and I have many friends who have children who are autistic," said Yitbarek Arefeaine.

Early intervention was key for 7-year-old Ahadu Arefeaine who is now making great progress through speech and occupational therapy. He sometimes even teaches his parents a thing or two.

"He can tell you everything you wanted to know about a bee -- more than I ever knew," said Arefeaine.

The annual walk sponsored by Autism Speaks drew families and supporters from all over the D.C. area. Together they raised closed to $700,000.

"This money goes toward research and autism awareness," said Joe Galli, chair of the D.C. chapter of Autism Speaks. "These kids are struggling to get the treatment that they need."

On the other end of the Mall, protesters held an event of their own questioning the practices of Autism Speaks.

"They use fear and stigma and pity to try and raise money off the backs of our people," said Ari Ne'eman, president of the Autistic Self Advocacy Network.

The group says the money raised Saturday and at future events won't all go to help those with the disorder. "Its funding goes overwhelmingly toward things like genetic research to create a prenatal test to end our existence," said Ne'eman.

The protesters were set up where they could be seen, right near the path of Saturday's walk. They said they did get some backlash but most people were receptive and wanted to learn more.

I Found a Guy and I Lost Him. Or, It isn't a Big Deal.

So a long time ago I put my best friend's boyfriend on the task of finding me a date. 23 and I've never been on a date before. PATHETIC.

Fast forward to Sept, one weekend night. I get a call from a bar. A friend was out with a friend and his friend's friend. Was I interested in a hook up or a relationship? I replied that I wanted A DATE. I would never hook up and how do I know if I want a relationship with someone I'd never met? He knew I had CP and he knew of my limited dating experience before I got that call from the bar. So that took some of it off of me, which was good. BUT he wasn't told that I'm bipolar, cause you can't see that. That made me nervous. I imagine that to be a more likely deal breaker. People think of people with BP as crazy, as drug addicts, as having sex with little boys (Remember Mary Kay Letourneau? That was her defense...). I'm diagnosed with BP II and I take my meds for the most part. Not only is BP II a more moderate form of BP, but I would say I'm in the mildly moderate area of that. I'm not crazy, just a bit of a mess.

I had his # for a month or so maybe. I don't think I ever would have called him. I was out for a friend's 25th birthday. One of our friends (who had gone to high school with him) happened to be glancing way across the bar. He was there. It was his friend's 25th birthday. He ditched his friend for 45mins to hang out with me. He called me the next day and picked me up and we went to the local diner. The next weekend was a horrible rainstorm so our plans got canceled. But the next weekend we went out and the weekend after that. We talked on the phone for an hr 2-3X/week and texted. Then it was my other friend's 27th birthday, thanksgiving the following week (still calling & texting), he went away, finals for me, that brings us to Christmas where I thought we had plans. We're Jewish. Christmas is National Chinese Food & Movies day for us. I texted him. He texted back 'who's this?' He took my # out of his phone. Didn't even have the decency to text me and tell me things weren't working out. I had an inkling. I hadn't heard from him in a week. But I thought he was a better guy then that.

For all these years (like 6) I wanted a 'nice Jewish boy.' And that's what I got. I knew I trusted my friend. But I learned something. I don't want a nice Jewish boy anymore. I want an ultra liberal Jewish boy. I've joined the local ADAPT. I have an ultimate goal of getting arrested by the time I'm 30. This guy was too conservative for that. I knew that from the start. It didn't mean that he couldn't be OK with me being ultra liberal. I gather that he wasn't and that's what it was. I'll take a crip and I'll take an AB. I'll take someone who's into save the whales. It doesn't have to be disability issues. Whatever. Just as long as they're passionate.

I'd like to share a word of wisdom (yes just one). Something that I learned over those 6 weeks. If something isn't a big deal, don't make it seem like it is. I never found out what he knew about what CP is. My friend didn't remember what he had told him, and like maybe he googled it. I don't know. But I could tell he didn't know a whole lot. So how do you bring it up? There were certain things he needed to know if he was sticking around for a bit. Not only how, but when? On the 3rd date, the 4th, the 5th, the 10th? I was kind of agonizing over that. I wanted to blog about it, but I decided that it isn't always good to blog about other people who might read it at a later date. He won't now...

2 people told me to take him out to eat and just come out with it. I could tell he had questions he was afraid to ask. I'm very open about discussing my disabilities with most people. Sit him down, tell him that, have a conversation. If something isn't a big deal, don't make it seem like it is. That would certainly make it seem like it is. I decided that I should just let things come out in regular conversation. That worked well. For example, one time I called him and he asked what I was doing. I said I was lying in bed. It was cold that day and that aggravates my spasticity. Lying on my stomach helps to stretch out my whole entire body. The downside of that? What came up in normal conversation was about ADAPT and how I want to get arrested. I hadn't planned on telling him so early, but it just came up. I know I scared the crap out of him. Back to the good side of it. I got rid of him early and didn't waste my time with someone who won't embrace my ultra liberalness. I still think I approached the subject of that disability in the right way.

What I didn't do right was tell him about my BP. I never did tell him. People who should know what they're talking about told me not to. I wish I had. People told me to let him get comfortable with the CP first and then ease him into the BP. I'm not sure if that was good advice or not. Someone told me that you don't have to tell someone everything about you on the first date. That was good advice. Someone simply said DON'T tell him. That only made me want to tell him even more. Except I never talked to him after that.

Why was that exceptionally bad advice? Because hiding it like that, that only makes it seem like a big deal. It makes it feel like a big deal to me. It makes it seem like I'm ashamed to be BP. AND I'M NOT. That person was basically telling me I should be. In many senses I'm proud of my BP. In others I'm very frustrated by it, but that's another post entirely.

I wish he knew I was BP before he met me. I wish he had been told in whatever way he was told I have CP. I don't see a difference between the 2 and it certainly would have made things easier for me. Back to 'people think of people with BP as crazy, as drug addicts, as having sex with little boys' and 'if something isn't a big deal, don't make it seem like it is.' I wanted to just tell him in normal conversation, just like I did with CP things. But I couldn't. How do you tell someone that hey, I have this thing, but I'm not crazy? Maybe just like that? Except where does the natural conversation starter come in? I say to my friends, 'I'm sorry if I'm snappy today or talking too much, or whatever. It's not anything to do with you. I'm manic today.' That's ok. They know me and I'm not the only BP in the group. But I don't think it's the greatest thing to say when someone who doesn't know picks up the phone.

Should I have told him on the first 'real' date (not at the bar)? The 2nd? The 3rd? Over the phone on purpose? Over the phone but wait for an 'in'? Not in a text. I know that much. I want to learn from this for next time. I think I'm going to the ADAPT youth summit in Chicago this June (crossing my fingers). Maybe I'll meet someone there. I can be out and proud there, not a problem. But maybe I won't...