Activism in Russia

Please help this young woman with CP get out of a Russian mental institution!
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Russian disability activists acting on behalf of Katya Timochkina, an
18 year old child with cerebral palsy, are requesting that people
write the governor of Samara Region in Russia and let her leave a
psychiatric institution, where she is being kept against her will.
Katya has no psychiatric disabilities and has expressed a wish to get
an education (she has never received an education) and have a
successful career as a psychologist.

You can learn more about Katya at the English language blog, In
Solidarity with Katya Timochkina (http://katyat.wordpress.com). The
blog includes a link to a Russian-language interview on Youtube with
translation into English.

The simplest and most effective way of helping Katya is to write a
postal letter to the governor. Russian officials are required by law
to respond to each piece of written correspondence. Even a short,
carefully-written, personal letter on why Katya's fate is important
to you- without assuming a preachy or accusatory tone- would be very
powerful.

These letters are especially important now because in Russia's
current political climate it is increasingly difficult for community
activists, including disability activists, to operate. A regional
minister in Samara lodged a complaint to Russia's human rights
ombudsman that certain disability activists were expressing undue
interest in the fate of Katya! These very activists also happen to
serve on a government commission on inclusive education for children
with disabilities!

The governor's address is:

Vladimir Vladimirovich Artyakov, the Governor of Samara Region.

His address is:

Russia 443006,

Samara,

Molodogvardeiskaya Ulitsa, 210.

Postal letters with the sender's address and a request for a reply
bind the Governor to respond.

While an email does not require the governor to respond, it also
generate attention. Email the governor at governor@samara.ru

Katya's case has been covered several time in Izvestiya, one of the
top three newspapers in Russia and covered on national TV there. She
has the potential of becoming a symbol of Russian children with
disabilities who seek to live fulfilling lives of dignity, where they
can offer their gifts to the world and make a positive contribution.
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To whom it may concern,

I have heard about the plight of Katya Timochkina, the 18 year old with Cerebral Palsy who lives in your country. Because of her intelligence and her successful education, I ask that she be allowed human rights to be able to leave the mental institution where she currently lives.

People with disabilities can lead very successful lives outside of an institutional environment. I have Cerebral Palsy myself, and am college educated, and living with assistance in my own apartment. I have friends, own a company, and am even even engaged to be married.

Once again, I urge you to let Katya Timochkina leave to pursue a life of successful community integration. Life outside of an institution can be daunting without supports, but if she is given the support that she needs to live a life of her own, I am confident that she will be a productive member of Russian society.

I thank you for your time. Sincerely,

Nick Feldman
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All responses are welcome! Show the world that people with disabilities can lead very productive lives outside of the institutional environment.

Very Busy

For me, the holidays are always busy. I was lucky to see a couple of my old friends this week, and I also celebrated Vanessa's birthday. Times are tough on all businesses, and I am not excluded. Bills, mixed with life and a twist of drama can add up to be pretty realistic.

I will write more later, but I have to go write a letter to in home supported services about my lack of payment for December, but it;s time to get on it!

The Cab Ride

I thought this was beautiful...another great reason for more in home care.
----------------------------------

An Inspirational Story, Motivational Story -
The Cab Ride
By Author Unknown (submitted by Rebekah)

Twenty years ago, I drove a cab for a living. When I arrived at 2:30 a.m., the building was dark except for a single light in a ground floor window. Under these circumstances, many drivers would just honk once or twice, wait a minute, and then drive away. But, I had seen too many impoverished people who depended on taxis as their only means of transportation. Unless a situation smelled of danger, I always went to the door. This passenger might be someone who needs my assistance, I reasoned to myself.

So I walked to the door and knocked. "Just a minute", answered a frail, elderly voice. I could hear something being dragged across the floor. After a long pause, the door opened. A small woman in her 80's stood before me. She was wearing a print dress and a pillbox hat with a veil pinned on it, like somebody out of a 1940s movie. By her side was a small nylon suitcase. The apartment looked as if no one had lived in it for years. All the furniture was covered with sheets. There were no clocks on the walls, no knickknacks or utensils on the counters. In the corner was a cardboard box filled with photos and glassware.

"Would you carry my bag out to the car?" she said. I took the suitcase to the cab, then returned to assist the woman. She took my arm and we walked slowly toward the curb. She kept thanking me for my kindness.

It's nothing", I told her. "I just try to treat my passengers the way I would want my mother treated".

"Oh, you're such a good boy", she said.

When we got in the cab, she gave me an address, then asked, "Could you drive through downtown?"

"It's not the shortest way," I answered quickly.

"Oh, I don't mind," she said. "I'm in no hurry. I'm on my way to a hospice".

I looked in the rear-view mirror. Her eyes were glistening.

"I don't have any family left," she continued. "The doctor says I don't have very long."

I quietly reached over and shut off the meter. "What route would you like me to take?" I asked.

For the next two hours, we drove through the city. She showed me the building where she had once worked as an elevator operator. We drove through the neighborhood where she and her husband had lived when they were newlyweds. She had me pull up in front of a furniture warehouse that had once been a ballroom where she had gone dancing as a girl. Sometimes she'd ask me to slow in front of a particular building or corner and would sit staring into the darkness, saying nothing.

As the first hint of sun was creasing the horizon, she suddenly said, "I'm tired. Let's go now."

We drove in silence to the address she had given me. It was a low building, like a small convalescent home, with a driveway that passed under a portico. Two orderlies came out to the cab as soon as we pulled up. They were solicitous and intent, watching her every move. They must have been expecting her.

I opened the trunk and took the small suitcase to the door. The woman was already seated in a wheelchair. "How much do I owe you?" she asked, reaching into her purse.

"Nothing," I said.

"You have to make a living," she answered.

"There are other passengers," I responded.

Almost without thinking, I bent and gave her a hug. She held onto me tightly. "You gave an old woman a little moment of joy," she said. "Thank you."

I squeezed her hand, then walked into the dim morning light. Behind me, a door shut. It was the sound of the closing of a life. I didn't pick up any more passengers that shift. I drove aimlessly lost in thought. For the rest of that day, I could hardly talk. What if that woman had gotten an angry driver, or one who was impatient to end his shift? What if I had refused to take the run, or had honked once, then driven away?

On a quick review, I don't think that I have done anything more important in my life. We're conditioned to think that our lives revolve around great moments. But great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

People may not remember exactly what you did, or what you said,
but
they will always remember how you made them feel.

OBAMA WINS!!!

My grandfather started the first African American radio station in Baltimore, and my father is a former reporter who interviewed Malcolm X. I am so happy that my grandfather is looking down to see the first black President and the hope of a brighter future for America and all of our issues that face our Nation, and the world.

I look forward to what's to come.

Funny Quotes

W. C. Fields.

Thoughts for the Day

John McCain can't type.


Moving sucks.

Indecisive...

World peace.

I get by with a little help from my friends.

Wild World (for you, Michael!)

Moonshadow.

Where do the Children Play?

The woman in the moon.

A Horse With no Name.

Supported Life - Day 1

I touched down in Sacramento today.

I've got the whole day free tomorrow (Wednesday) and I would love to see anyone. For anyone who cares, I'm giving a presentation about supported learning at the Supported Life conference at the Doubletree.

Today was all about the train, the hot tub, and the hotel bar.

And of course, the debate.

Give me a call on my cell at 415-407-9297.

Crazy Life

My life is so crazy right now.

My girlfriend and I got into a big fight, and now I don't know whether or not she will move in with me. She and I have been together for 6 years, and we are both guilty of holding onto feelings and not being able to accept each other's differences and opinions. My life is up in the air because she is making me wait on her decision despite many inconveniences. I am also in the process of moving to my new office, and my internet is down at home.

Anyone reading this should contact me, as I am really in need of friends and support with all of this turmoil. I wake up too early, I have nightmares, and I'm always stressed. I will begin to write more when things are calm again. I am afraid to lose 6 years of a relationship over one argument, but then again, life has to go on. I am also afraid to be living alone and having to be on my own again. My new house is nice, but I really want my girlfriend to move in with me. If we do end up going our separate ways, it will force us to go through 6 years of crap, and separate her stuff from my stuff. What a bummer. We are both very hardheaded and very detemined, and there's a lot to be said for both of those qualities.

I just keep thinking, "why is it all happening right now?" and, "why does this have to be so hard?" I have to go give a speech next week, not to mention get a ramp installed, pack, move, find some new attendants, get my internet working at home, start graduate school online, and not have a nervous breakdown in the process, and I am close.

I hope this is not the end...

My Friend Nick

I have a friend named Nick Dupree. Nick has done something very bold. Nick had MD since he was a child, and has grown up in Mobile Alabama with his mom, his grandma and his brother who also has MD. Nick uses a ventilator to breathe and a wheelchair to move around. He also uses the computer, the internet and email to communicate with the outside world. Nick has decided at age 26 to move from Mobile Alabama to New York City. After fighting Medi-Caid and winning, Nick, unlike thousands of others who are vent dependent are required to move into nursing homes because of the high level of care that they need to live. Nick wanted to stay at home and get nursing care In-Home. In most states it's possible, but in Alabama it's not. At the end of August, with nurses treating him really badly, and his mother in bad health, Nick has decided to move into a rehab hospital on a stop before moving into an apartment, and going back to school. Nick's care is expensive, but his mind is priceless. I highly reccommend reading his blog to find out just how determined Nick is.

Nick is on myspace.

http://blog.myspace.com/nickdupree

Looking for a new place to live

B-town needs to help me find a new place to live that's cheaper! The place where I'm at now does not even pay for itself and if anyone knows of any place in Berkeley ,CA I would love to hear from you!

Hurricane Ike

Hurricane Ike similar to Hurricane Katrina but not as strong and blown way out of proportion by the media but the people that chose to stay must have known what they were in for....the train wreck in LA was put together to slow down the mass transit program due to the pending budget crisis...these are just my 2 cents.

Wordle Blog

Here is a past blog put into Worldle. Two varieties.

The Wickedness of Facebook

My latest addiction is Facebook.com. I have met a lot of old friends, but I have also met people I don't know! This is kind of freaaky! You can play all these games with people, you can poke people in a cyber way, and they can poke you back in a cyber way. I wrote to someone I thought was a friend, but I had no idea who the hell they were when they wrote me back, and my friend was bought and sold...I don't understand!

Another fucked up application in facebook, and now it looks like myspace and facebook have merged into one. I hope this isn't true, myspace was so nice in the beginning! Facebook is also weird because it connects you to people you haven't seen in 25 years, and all of a sudden they have a first hand picture of who you are, and who your friends are. But I gotta give it to the facebook hippies, because they have a virtual garden that raises money to help the rainforest, and I think that's pretty cool.

But my advice to facebook is don't intertwine yourself with myspace, lose some of your crappy applications, and I think what you're doing is great in terms of networking people together. My friends at Skylake Ranch Camp (SRC) got together on facebook, and I got so excited that after our realtime meeting, I broke my foot! So, facebook, you and I have a love/hate relationship!

Oh! I forgot to mention, every time I get poked or get a new message, it goes straight to my cell phone. No, really! I'll be in the middle of a meeting, and it will suddenly pop up that so-and-so has finally reunited with me, and so the person in the meeting gets to talk while I get to think about who the f--- friended me! Myspace is no better, and as the quote says on Romeo and Juliet, "A plague on both your houses!"

That's all, folks!

CP and Depression

Today I visit the topic of depression and CP. It happens at all ages, and in all cultures. Depression in itself is a feeling of hopelessness, loss, and despair. It can only be compounded with CP, and the way our culture, and the world runs. We all have to get educated, get jobs, find housing, have relationships with people, have our self interests met, and so much more. Just CP on top of every day life can be very frustrating. Some folks with CP have trouble with communication, which can lead to a build up of frustration, tantrums, feeling withdrawl, and not wanting to participate in the choices of life. But instead, in some cases, we (those with CP) would use an attendant, or helper to make the real world into a fantasy game. For example, I have a friend who wanted to find a job. He told his helper that he was to find jobs on the internet, and send them my friend's resume, and then call the job back for follow up. This removed my friend from actually doing the job at hand, and instead, sadly to say, watched someone else apply for jobs, and go through the whole process, and they didn't care. The time was wasted because my friend was taken out of the process voluntarily, after they were rejected time and time again. Imagine not being able to talk, and having to drive a wheelchair. Imagine the indignities of fighting with the equal playing field and the competitive edge. All of this needs to be done by the person in whatever goal they choose, they will not feel as bad, or different because they are doing it. Do you ever watch a movie, and think to yourself, "How easy is this?" Then you go to do it, and it's really hard. I think a good way to deal with depression and CP is to be engaged, and find meaningful things to do. Create a priority list, and get through at least one priority a day. Talk to any friends and relatives, or loved ones regularly, and don't forget your pets! Live life, and be grateful. Get involved in groups, and say "Nothing about us without us!" Stay informed with what's going on, it may lead to a job, or a future housing opportunity. Never doubt yourself, and always try and make independant, informed decisions about one's life. Try always to talk about stuff that's on your mind, and if need be, seek mental health, counseling, or talk to someone who has similar issues, or problems that might be able to shed some light on what one is going through. On a personal note, I like to write letters and emails. I think they help get my point across, and allow me to get the whole thing out, and be understood. I think on the other side, it allows for reflection, and introspection...my two cents.

RNC Cancelled

(In response to this:)

This was the greatest excuse in the world for McCain and the whole RNC to get away from the shot in the arm of going through the misery of trying to explain a running mate that no one knows, and trying to turn a pathetic oaf into a hero. This is not going to happen. This tells me as a liberal American that McCain is truly afraid.

There are people whom I know with life threatening illnesses on respirators who almost literally climb mountains to give a speech. It shows me as a person with a disability who has to brave the weather to get my job done. What a coward McCain is. But that goes for the whole Republican party. Any good leader understands tragedy, and natural disaster, as well as advancements in technology. Why can’t Senator McCain, and all of his delegates do everything via webcast, and still make it a fund raising event. And see how much money the Republicans could have raised, selling off their propaganda, and all that food. What happened to having a plan B?

We’ve been hearing about Gustav since Monday. I think Obama would have rose to the occasion, and had the convention in a different state. They can do votes many different ways, including a conference call. This just furthers my belief that Obama is going to be our new leader. The Republicans have sadly enough gotten a dose of their own medicine by the reaction of fear.

No way, no how, no McCain!

Omg, Gimps Gone Wild!

I have been a very big critic of not talking about people with disabilities and sex, and when reading my discussion groups, this came up, and it was not only erotic, but it was educational as well. Those gimps do it too, lol. I know this is a pretty risque topic, and keep the kids away, but we all have to understand that sexuality is a normal part of life for all of us, able or disabled, young or old, and yes, to answer your question in advance, I think this site is hot! It's really here hot here in California, anyway. My own two cents on the subject is that all teachers and medical professionals as well as others who work in the field need to understand that sex and disability has to be creative, and sometimes assistive devices, and even PCAs are necessary. To deny anyone this right is just wrong. We don't teach about birth control, abstinence, or even sex education to most special ed kids, so they always wonder, and we all know that they get that feeling one day, and I think about my friend, who I'll call Bob. Bob grew up, and would see people kissing, holding hands, hugging, and even at times, touching each other. Instead of Bob having the satisfaction of feeling this way himself, he always went without. He would always say things like, "what is it like to have a girlfriend," "does sex hurt?" It's questions like these that haunt me about the subject. We must educate, even the ones who feel uncomfortable, because it's like a shot in the arm: once you get it, it's not uncomfortable anymore. It's not porn, it's natural. And Bob went to his grave never having sex, or a relationship.

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I hear ya Kimi {thumbsup}

Easy access lingerie is a great invention [smile].

There are perks to dating DA that just don't happen as smoothly with
an AB.

An example- If you're both disabled you get a lot more quality time
that dosen't happen if an AB partner has to finish chores a PCA
didn't finish {when the PCA couldn't show up, etc}.

When I was with a DA guy we never had any problems with the chore
load issue because we'd both have the same amount of time and focus
to give to each other while the chores were left until a PCA could
get to work again.

There was more understanding and being on the same page when it came
to both of us being disabled.

DA realationships are very far from 'settling' as some ignorant types
believe. Double DA can work way better than DA AB. We're the ones
who bennefit from the experience and dating DA is not scrapping the
bottom of the barrel at all or 'taking what we can find' leftover
second class quality.

Does this make me a DA Dev?

--- In independentliving@yahoogroups.com, Ksmile96@... wrote:
>
> Eric and I did not need any where near as much help as Jen and Doug
do, but
> we did need help undressing, transferring, setting up and cleaning
up. My
> PCA would get me dressed in lingerie that I could move or take off
myself
> before putting me in bed. Since Eric, like Jen and Doug, was
dependent on the
> vent a nurse/PCA had to be in the other room. It wasn't the only
reason, but
> that was 1 reason I usually always wore lingerie. Yeah, it sucked
that we had
> little privacy and it wasn't easy getting used to people coming in
and out of
> the bedroom when we needed something. But we had a great sex
life. It was
> actually the best sex life I ever had w/a guy, even AB guys. Yes,
there was
> less spontaneity, but in the end we had a much more active sex
life than our
> AB friends. We were also lucky to have PCA's who were comfortable
w/the
> situation. You are right Amy, it takes guts, but what do you do
when you are in
> love w/someone who happens to be severely DA also? You do what
you gotta do.
> I never thought in a million years I'd get engaged to a DA guy.
One thing
> I liked about dating Eric vs an AB guy was I believed him more
when he gave
> me compliments about being beautiful and sexy b/c his body was not
the
> societal norm either. He helped my self confidence and body image
immensely.
>
> Kimi
>
> }i{
> Visit my myspace page and blogs: _ www.myspace.com/ksmile96_
> (http://www.myspace.com/ksmile96) }i{
>
> "We come to love not by finding a perfect person but by learning
to see an
> imperfect person perfectly" - San Keen
>
>
> In a message dated 8/24/2008 10:36:57 P.M. Eastern Daylight Time,
> charmedcripchic@... writes:
>
>
>
>
>
> That's the real gist of the issue- how do you make everything work
> out when PCAs have to position you, clean you up, maybe assist
with
> putting on protection? Hiring PCAs for non personal tasks is
> difficult enough.
>
> I have some PCAs who've told me after viewing Gimps Gone Wild {in
> theory not practice} how if the need arose they'd help me because
> they care, but would still find it difficult.
>
> They find it difficult- heck I'd find it difficult- but that's
just
> me and just at this momment in my life.
>
> What if tomorro me and a special somebody fell crazy in love for
each
> other? But we couldn't do each others personal care?
>
> Years ago I was somewhat initiated into double disability love
life
> while in a serious relationship with a guy with SCI. We had to
have
> a PCA to transfer me, but my guy was able to take things from
there.
> Spontenaety was not as good but anticipation and arrousal was
> happening while waiting for a PCA to show up and give me a lift.
> Planned sex happens more often than waiting for a spontaneous
urge.
>
> Later on I had to readjust when I had an abled bod partner. All of
a
> sudden foreplay gets switched from slow and steady to brace
yourself
> bridgette. {bad irish joke there}
>
> To each their own and I mean no disrespect to those who need a
PCAs
> help in the bedroom. You got more gutts than anyone I know. My
kudos
> to you.
>
> --- In _independentliving@independentlind_
> (mailto:independentliving@yahoogroups.com) , mvolkman@ wrote:
> >
> > This is great! It's not exploitation on their part if they are
> doing
> > it of their own free will. If anything, any exploitation in the
> sex
> > business happens when somebody pays money for it, even if it is
by
> > choice. But I digress. These two are having a good time and like
> > showing off. To some it may be a fetish, and there's nothing
> wrong
> > with that. To others, it's a chance to learn something. I would
> get
> > turned on watching them. Using their equipment is creative and
> > interesting, and makes for a great example of seriously in-depth
> IL
> > skills peer training. I don't think I could bring an aide into
> the
> > process, though. I would have to have a partner who has mobility.
> >
> > On Aug 24, 2008, at 9:44 22PMEDT, Amy wrote:
> >
> > >
> > > WARNING- VERY GRAPHIC ADULT CONTENT
> > >
> > > Don't Read this if you're uncomfortable with disability porn
> > >
> > > You've been warned
> > >
> > > XXXXXXXXXXXXXXXXXXX XXXXXXXXXXX XXXXXXXXX
> > >
> > > Gimps Gone Wild is not an unknown site here. It's a website
run
> by
> > > and for people with disabilities to sell pictures of
themselves
> from
> > > exotic settings, elegant costumes, to full out porn.
> > >
> > > Newer stars causing some commotion on the Gimps Gone Wild site
> are a
> > > married couple named Doug and Jenn who both have SMA and use
> > > ventilators. They sell pics and films that prove beyond any
> doubt
> > > that sex is not impossible as long as you have a big enough
bed,
> > > helpful PCAs, and a hoyer lift.
> > >
> > > {Hey, even I just got educated in some alternative uses for a
> hoyer
> > > lift looking at Doug and Jenns promo proofs}
> > >
> > > Doug and Jenn are breaking new ground at Gimps Gone Wild but
are
> > > they exploiting themselves? Or just participating in the syber
> > > adult film culture like any other adult is free to take part
in?
> > >
> > > Doug and Jenn put that whole late 1980s Playboy centerfold
with
> > > spinal cord injuries contraversy into old fashioned qaintville.
> > >
> > > WARNING GRAPHIC LINK BELOW
> > >
> > > XXXXXXXXXXXXXXXXXXX XXXXXX
> > >
> > > Link to Doug and Jenns page at the Gimps Gone Wild website:

http://www.gimpsgonewild.com/doug_n_jenn.htm

Clinton speech on Obama..

DENVER — Hillary Rodham Clinton and Barack Obama agreed Monday to limit a divisive roll call for president, giving delegates a brief but historic choice between a black man and white woman.

The deal would allow some states to cast votes for both Obama and Clinton before ending the roll call in acclamation for the Illinois senator. Clinton herself may cut off the vote and recommend unanimous nomination of Obama, according to Democratic officials involved in the negotiations. They discussed the deal on condition of anonymity while details were being finalized.

Some Clinton delegates said they were not interested in a compromise, raising the prospect of floor demonstrations that would underscore the split between Obama and Clinton Democrats.

"I don't care what she says," said Mary Boergers, a Maryland delegate who wants to cast a vote for Clinton.

As part of the deal, Obama and Clinton activists teamed up and circulated three petitions on the convention floor Monday night _ supporting Clinton, Obama and vice presidential candidate Joe Biden. Each needed 300 signatures to be nominated.

The dealmaking indicates the divided nature of the party: Obama does not have full control over a convention that includes many delegates who are enthusiastic Clinton supporters. But both senators have an incentive to help make peace between their opposing sides _ Obama so he'll have their backing in November and Clinton so she'll be well positioned for a future run.

Clinton herself said she wouldn't tell her backers how to vote, but she told them she would cast her own vote for Obama. "We were not all on the same side as Democrats, but we are now," she said.

Kathleen Kennedy Townsend, the eldest child of the late Robert F. Kennedy and a former lieutenant governor of Maryland, said the animosity that some Clinton delegates feel toward Obama "is getting worse."

The R word

Appearing in the LA Times late last week... (http://www.latimes.com/news/opinion/la-oe-shriver22-2008aug22,0,4571473.story?track=ntothtml)

Passing through Santa Cruz.

I touched Santa Cruz on Friday pm then on Saturday we went to the boardwalk,and played lots of games.

We ate like soldiers, and we fished and fished...
We caught little fish and enjoyed the boardwalk...
And it was nice to be in such a friendly place.

Peter Paul and Mary - DOn't Laugh At Me

Peter Paul and Mary - Don't Laugh At Me

I'm a little boy with glasses, the one they call a geek
A littl girl who never smiles cuz I got braces on my teeth
And I know how it feels to cry myself to sleep
I'm that kid on every playground who is always chosen last
A single teenage mother tryin to overcome her past
You don't have to be my friend if it's too much to ask

Chorus:
Don't laugh at me, don't call me names
Don't get your pleasure from my pain
In God's eyes we're all the same some day we'll all have perfect wings
Don't laugh at me

I'm a cripple on the corner
You pass me on the street
I wouldn't be out here begging if I had enough to eat
And don't think I dont notice that our eyes never meet
I lost my wife and little boy someone crossed that yellow line
The day we layed 'em in the ground was the day I lost my mind
Right now I'm down to holdin' this little cardboard sign

Chorus
I'm fat, I'm thin
I'm short, I'm tall
I'm deaf, I'm blind
Hey aren't we all

Chorus.

Came Across These Lyrics

Tracy Chapman - Subcity

People say it doesnt exist
cause no one would like to admit
That there is a city underground
Where people live everyday
Off the waste and decay
Off the discards of their fellow man
Here in subcity life is hard
We cant receive any government relief
Id like to please give mr president my honest regards
For disregarding me

They say theres too much crime in these city streets
My sentiments exactly
Government and big business hold the purse strings
When I worked I worked in the factories
Im at the mercy of the world
I guess Im lucky to be alive

They say weve fallen through the cracks
They say the system works
But we wont let it
Help
I guess they never stop to think
We might not just want handouts
But a way to make an honest living
Living this aint living

What did I do deserve this
Had my trust in god
Worked everyday of my life
Thought I had some guarantees
Thats what I thought
At least thats what I thought

Last night I had another restless sleep
Wondering what tomorrow might bring
Last night I dreamed
A cold blue light was shining down on me
I screamed myself awake
Thought I must be dying
Thought I must be dying

After hearing this song today, I miss staring up at those trees that are thousands of years old. I miss the silence, and the rustle of nature. I miss the intense feeling of awe when I look at the waterfall, and wondering how something so big compares to us humans. I wonder how long we can preserve the valley of Yosemite, and how many more times I will get to visit. It is so awesome, and so humbling at the same time. The animals, the air, the heat during the day, and the cool air at night, the drifting away from convoluted city life, and the worries of coming back to this harsh reality of our existence, and the fight for the almighty dollar. Yep. I need a vacation. The song above is pretty right on with the way the general population exists, and we need to be aware that they don't get to see those big old redwood trees, and the rocks sculpted by water. There's nothing like looking over and seeing a seven color bird with a wingspan of probably 2 feet-and no I haven't forgotten about the mosquito bites-but I'll risk it. A lot of people focus on the fire in the valley, but with fire comes incredible rebirth of plants, trees, and nature. It is a natural occurrence that fire destroys, and then nature comes back twice as strong...good night valley.

IHSS and the California Budget

These people deserve a very high wage. People with all sorts of disabilities require all sorts of assistance, and people on IHSS always seem to pay really low. In 1994 the wage for an IHSS worker was $7/hr, and I, and many other people, have fought very hard to get it to $10.50/hr. This includes many trips to Sacramento to be with legislators. We have sat through hours, and hours of rallies, and it's come back to this.

(Found on the Bay Area Special Needs Yahoo Group:)

I just wanted to share what is written in the most recent SEIU newsletter with regards to proposed budget cuts:

Return to minimum wage: decrease from 11.50 per hour to 8.00, a significant difference in pay.

Loss of hours: domestic-related services would be eliminated for functional index 1-3 (preparing food, feeding, cleaning, shopping) This could mean up to 20% reductions for consumers.

Changes to functional index scores: These determine level of need: a Functional Index Score of 1 means "can perform task independently" and a score of 5 means "cannot function without assistance". The proposal is to eliminate those with an average 1-3 score.

There are rallies coming up and we as parents to the consumers can have a strong voice in this area. It should not be surprising to most of us that the majority of support workers are underemployed, less educated, often of immigrant worker status and may not have the same privileges that many of us enjoy, so their need for a voice is very important and we can fulfill that role. While the workers have union representation through SEIU, they may not be aware of their rights.

Discussion of the day..

DDS needs to learn how to grow with people who have high intellects and answer many questions
including post college services. This does not begin to cover the issues of housing, debt management, marriage counseling well as peer support. The answer is life brokers who are third party and have good relationship with clients. There should be life positions that changed only at,
client's request.

Berkeley and LSD

LSD and Berkeley seem to go hand in hand. I do not think LSD is necessarily a bad thing, or a good thing, but an experience that is what it is for those who choose to indulge. Like most other things, if you do not do it in moderation, it will rot your brain, and affect your longterm memory, and really screw up your mind. I know of a fight (a duel, perhaps) about ten years ago. Two potheads got into a fight, and one was on LSD. Ten years later, one of the people did not remember anything about the incident, and then one day, all of a sudden, right here in Berkeley, came up to his forgotten enemy and it all came whooshing back. I don't know, I don't judge crazy Berkeley, it saddens me, though that two grown men cannot come to peace, and let bygones be bygones. I remember I was at a protest once, and someone yelled, "peace, love, and LSD," but a lot of the other protesters were saying, "hey, don't talk like that, it's illegal!"

Well, I think that's the problem with this country: people don't talk it out. They don't look each other in the eye. They don't talk shit to each other, and then they don't have the ability to rise above their egos, and admit when people are wrong, and in the end, there's no peaceful closure. This is a hard world to live in, a hard time, and one hell of a society. It saddens me that I rarely see people come to terms with each other. If people got a long more, and forgave each other, I think they'd have much better trips.

That fight that I spoke of, happens every day. Even in Berkeley, where we are so liberal, and yet...people who call themselves men, really act like big kids. Maybe it's part of their trip. Maybe it's part of reality. Maybe it's the monitor melting into the desk, or seeing M&Ms when you look at yourself in the mirror, or hearing the radio through the microwave. Maybe Jimi Hendrix really is on the fence over there, and then maybe my CP gets better on this trip, but the bottom line is, folks, we're all on this trip together, and the journey would be a hell of a lot more fun if we could all put aside our differences, and just get along. Just imagine how easy it would be to come down from a high if everyone had the same vision...I can't save the world, and I can't tell people what to do, but I think that when you can come to terms with differences, it shows who the real men are, and it shows that as a group, even if it's a small group of people, we can change the world together. Also, if people choose to live in the park (People's Park), they should all respect each other. It's a historic place in Berkeley, and should be treated as such.

A Beautiful Day For a Protest

McDonalds Protest

I was there from 11am-1pm, and the camaraderie was great! There was about 50 people+ in chairs, and a lot of people honked in support. I will let you all know what the next act is.

Nick

James Thurber Quotes

Last night I dreamed of a small consolation enjoyed only by the blind: Nobody knows the trouble I've not seen!
-James Thurber

More James Thurber quotes here.

Tree Sitters

The oak tree grove is a beautiful place that should be cherished, not destroyed by the university in the name of building a new stadium. I think that the university and it's admins are not nearly as old as those trees are. The tree sitters are courageous people who should not be charged with a crime. The UC police should not hurt them in any way, and they should receive the proper food. Having been in many civil rights struggles over the years, I know how hard it is for those people to put aside their differences, and stay in those trees. Keeping the momentum going for over a year, and just barely staying alive says a lot to the perseverance of those people, the cause, and everything it stands for. There's not many of them, and there are too many of us not being involved. I long to sit in those trees, or when I am 80 years old, witness their growth, and bow down to their beauty. Let the trees stay, and let the people go free.

BCC Berkeley City Council

Tonight I went to the Berkeley City Council meeting, and it was pretty boring. The tribute to Dona Spring before the meeting and a mention by Kriss Worthington that there would be a life celebration on August 10th at the park seemed pretty cool. I will be on channel 28 sporadically over the next few days. Channel 28 is the East Bay local channel.

Today was a interesting day. It was filled with a myriad of adventure's and conversations.

Afghanistan

Are we still looking for Osama Bin Laden?

More Troops Going to Afghanistan

Remembering Council Member Dona Spring

Dona was an amazing person. Her leadership on the Berkeley City Council was valued to say the least. The disability community and Dona saw along the same lines on many different, complex issues that faced the city of Berkeley. I personally remember working with Dona on the second term of the City Emergency Service program for people with severe physical disabilities who required attendant care. When the council didn't know about a disability related issue, they would look to Dona for guidance, and advice. I remember her as charismatic, non-judgmental, very open minded, and very determined. Dona was an avid activist for disabled students, and community members. I really liked that she was for the warm pool here in Berkeley, and it's reconstruction, and I remember watching a live city council meeting online, and Dona said, "We need a warm pool now!"

Inside Bay Area article

Lyrics

Just a few of my thoughts for the day.
-------------------------------------

Moon Shadow
Cat Stevens

I'm being followed by a moon shadow
moon shadow-moon shadow
leaping and hopping on a moon shadow
moon shadow-moon shadow
and if I ever lose my hands
lose my plough, lose my land
oh, if I ever lose my hands
oh, if...
I won’t have to work no more
and if I ever lose my eyes
If my colours all run dry
yes, if I ever lose my eyes
oh if …
I won't have to cry no more.
yes, I'm being followed by a moon shadow
moon shadow - moon shadow
leaping and hopping on a moon shadow
moon shadow - moon shadow
and if I ever lose my legs
I won't moan and I won't beg
of (oh)* if I ever lose my legs
oh if...
I won't have to walk no more
And if I ever lose my mouth
all my teeth, north and south
yes, if I ever lose my mouth
oh if...
I won't have to talk...
Did it take long to find me
I ask the faithful light
Ooh did it take long to find me
And are you going to stay the night
I'm being followed by a moon shadow
moon shadow - moon shadow
leaping and hopping on a moon shadow
moon shadow - moon shadow
moon shadow - moon shadow
moon shadow - moon shadow

Tracy Chapman
Fast Car

You got a fast car
I want a ticket to anywhere
Maybe we make a deal
Maybe together we can get somewhere
Anyplace is better
Starting from zero got nothing to lose
Maybe we'll make something
But me myself I got nothing to prove

You got a fast car
And I got a plan to get us out of here
I been working at the convenience store
Managed to save just a little bit of money
We won't have to drive too far
Just 'cross the border and into the city
You and I both can get jobs
And finally see what it means to be living
You see my old man's got a problem
He live with the bottle that's the way it is
He says his body's too old for working
I say his body's too you to look like his
My mama went off and left him
She wanted more from life than he could give
I said somebody's got to take care of him
So I quit school and that's what I did

You got a fast car
But is it fast enough so we can fly away
We gotta make a decision
We leave tonight or live and die this way

I remember we were driving driving in your car
The speed so fast I felt like I was drunk
City lights lay out before us
And your arm felt nice wrapped 'round my shoulder
And I had a feeling that I belonged
And I had a feeling I could be someone
be someone
be someone

You got a fast car
And we go cruising to entertain ourselves
You still ain't got a job
And I work in a market as a checkout girl
I know things will get better
You'll find work and I'll get promoted
We'll move out of the shelter
Buy a big house and live in the suburbs

You got fast car
And I got a job that pays our bills
You stay out drinking late at the bar
See more of your friends than you do of your kids
I'd always hoped for better
Thought maybe together you and me would find it
I got no plans I ain't going nowhere
So take your fast car and keep on driving
You got a fast car
But is it fast enough so you can fly away
You gotta make a decision
You leave tonight or live and die this way

Tracy Chapman
Across the Lines

Across the lines
Who would dare to go
Under the bridge
Over the tracks
That separates whites from blacks

Choose sides
Or run for your life
Tonight the riots begin
On the back streets of America
They kill the dream of America

Little black girl gets assaulted
Ain't no reason why
Newspaper prints the story
And racist tempers fly
Next day it starts a riot
Knives and guns are drawn
Two black boys get killed
One white boy goes blind

Little black girl gets assaulted
Don't no one know her name
Lots of people hurt and angry
She's the one to blame

Boy Mows Lawns With CP

AT even works for youngsters!

Hospice and Sexuality

If the US could only learn...

A Word About Obama

Jesse Jackson said that Barack Obama was talking down to black males, but Obama has a good point: once you become a father, one should realize and take for responsibility for their child. They should pay child support, or be held accountable. I think Obama talks about real issues that affect real people. I know many single moms that fight really hard for child support. I also know many people who will do anything they can to get out of paying child support. They leave a job as soon as they're caught, and they have to pay. We owe it to our children to have fathers that are responsible and caring adults that make sure that they always can have food on their table, and clothes on their child as well as a roof over their head. I think Barack Obama would be more talking down if he said, "African American males should all get jobs and stop having kids."

As we all know, that's not a reality. Barack Obama speaks from reality, and the real question for our country is, "can we handle the truth?"

Here's the article.

DD and MH Taking Hits From Other Folks

(This is a post from Maggie Dee from the Berkeley Disabled list. Below it is my response.)

It is *very* troubling this singling out two parts of a very large cross
disabilities group...and meeting by meeting it is getting clearer and
clearer that there will be only two groups who are going to be served by
Olmstead!...and spending an entire meeting on this.

The so-called existing "allowance" is wholly inadequate! What is it now
$209? THAT is an insult to human beings! This amount of money might pay for
food if one is careful! I wonder how many people can live on a flat $50 a
week for food. I know I do but I cut EVERY corner possible and skip a meal
a day to do it.

Rents in the S.F. Bay Area **start** at $800 for a studio (S.F.) in the
*bad part of town* and most of those are not "accessible". $600!? What
about PG&E, water, garbage, telephone...not to mention food, clothing etc.
The SSI does not cover what is needed...so to make this possible we must
cut what? IHSS ancillaries? and other horrible cuts to give still MORE
money to folks with DD and MH issues!? What a gravy train they are
on!...Even they are demanding that "THEIR" programs not be cut!

So what it boils down to is a HORRIBLE US v Them! Nope, I will not play
that game! Any of us who are disabled regardless of how we are disabled
need basic human needs, we need our civil rights in tact...one canNOT feel
that one's civil rights are in tact when groups are fighting one another
for pots of money.

THEN, of all things, the "Boomers" are coming! Staggering numbers of people
will be knocking on program doors and we canNOT serve those already in the
programs!

Our people are sleeping in alleys, on top of vents in the street where
stinky heat comes to the street surface. People fight for these places.
Last year a partial quad was found with her feet and hands frozen! She was
not DD or not a person with MH...that is until she could not find housing
for 3.5 years! She crashed and burned. She lost both hands and a foot! God
knows if she has died by now. The poor soul was afraid to talk to anyone
when she was rolled into hospital in screaming pain!

I am going to have a *very* difficult time with this turn of events...a
WHOLE DAY on DD/MH! A WHOLE day on Us v Them! **WE** the collective "we"
can no longer be fighting for the shrinking dollar, we must pool our money,
spend it creatively not on one group or another!

Other than what the recent PAI/Laguna Honda lawsuit has been able to do,
setting so many units apart for those getting out of Laguna Honda or not
going into L.H. via the General Hospital diversion program (a one million
dollar fund!) the coalition lawsuit settlement established. I may not have
all the details but seems to me that someone was looking after at least a
few others who were not DD/MH or...maybe all folks being helped ARE DD/MH
diagnosis. Of course LH is one of the largest nursing homes in the nation;
the staff are paid incredibly huge sums of money to work there. The "new"
SEIU international prez wants to totally disrupt the way unions used to
work. Of course the union in S.F. has had something to say about this--but
just a matter of time before S.F. loses their ability to skirt the will of
the many.

So, as I understand it, there is no discussion of the state/federal money
that is dealing with all housing. This is like a few years ago when all
funding except one million dollars was to go into "senior housing". The
"other"/all other disabilities except folks with DD/MH status. All "other"
got a whole one million dollars for the entire **nation**!

Why are we setting up MORE silos! The DD community has been getting so much
money over the years and little remains. People on SSI who are not blind
deeply resent those on SSI who are "blind" and get so much more money! This
fighting among ourselves is so divisive!

I understand the funding streams are many and none available to "other
disabilities". Isn't it time that the "other disabilities"/cross
disabilities get some of the money. We have people on waiting lists for 7
to 10 years! Not folks who in the status of DD or MH...but the "other".

Gosh...a whole day! on DD and mental health!? And now there is a
clue/possible legislation that will make this all happen with the state's
unused land! I sat in on the Senate Floor a month or so ago and listened to
the Republicans and the Democrats debating what to do with this land...and
here it is, the land will be used for a few in our community!? I was
stunned to learn this as what I heard on the floor of the Senate would not
lead anyone to think that this land, or parts of it was an easily settled
matter! There was a huge distance between the Party lines! An now, it is
suggested that there will be 3 potential hospitals that will be used as a
"pilot" if legislation goes through...guess who for? Folks who already have
LOTS of money flowing into their various services! How demeaning to all of
us in the community...and to those of you who have to deal with all of this
awful mess!

I have heard that some states gives everyone a set amount of money and each
person has the right to choose the services that they specifically
need/want. While there is a tiny reserve for emergencies and only very
little--perhaps not enough to go around to very many people, sorta first
come/first serve. Does anyone have any "Best Practices" on this concept?

WOW! I have thrown so much your way. I have a hunch that his will be one
very LONG meeting with many feelings running high! Later...whew! Maggie

Maggie

--------------

Maggie,

People with DD and MH issues need these services and support just as much as people on IHSS. Your comment is hurtful and really intolerant.We can't help what our needs our and funding should be equal. Did you know in the DD world, Providers have not have a rate increase in over three years. Case manger's have case loads of over 80 clients a year and autism is coming in to the regional centers at 12 case per week. Clients in the DD community do not get access because of issue around behavior and other issue related to their condition. The DD community fights really hard on employment. We fight for advocacy and transportation, and are big supporters of bills that empower people with disabilities. It costs a lot of money for 24/7 care, speech therapy, PT/OT, meds, assistive technology, independent living, and day programs...we don't ask for what we get in life, and I think it is really unfair of you to be so biased. "Live on a gravy train?" Are you nuts? What about all the people that have MR, or autism? Shouldn't we all have the right to function in our society? I am really confused with you, Maggie. I thought you were for all disability rights: physical, DD, MH-aren't we all fighting for the same thing? Your words below are intolerable, and I expect a full apology, and some understanding of the DD and MH community before you are so quick to criticize. Was it Ed Roberts who said that everyone has a role in the disability rights movement? I am very disappointed. I look forward to your response.

"...other horrible cuts to give still MORE

money to folks with DD and MH issues!? What a gravy train they are
on!...Even they are demanding that "THEIR" programs not be cut!"

Nick

Today Was a Crazy Day

Today was crazy.

The woman who I hired did not show up for training, my office assistant was sick, one of my attendants got a wage garnishment, and I got two new clients. My money that I was supposed to get did not show up.

Later

Section 504 of the Rehabilitation Act - 1973

In 1993, I read a book called "No Pity," by Joseph Shapiro. It introduced me to a lot of ideas, and concepts behind the disability rights movement of the late 60's and 70's. One of the things that inspired me the most was Section 504, which mandates the all federal and state governments to include people with disabilities. HEW (now called DHS) got taken over for over 50 days by people with disabilities, and in the end, congress got it signed into law. Why is this such a powerful movement for me? Perhaps it's because I have a disability myself, but I think of it as a much bigger picture. A minority of a small group of people can change the world, and even make it better. Without Section 504, people with disabilities would be stuck in our world, and would not be able to be on the equal playing field when it came to programatic, and physical access. This law was exciting because it banned discrimination, which one can argue still exists today. Section 504 was on NPR recently, and a lot of my friends, coworkers, and other professionals that I know, have lived and died in the struggle to keep 504, and the ADA alive for future generations of folks with disabilities. I hope as you listen to the link below, that you reflect on the leaders in this country, and what is to come of the future of the disability rights movement.

I owe a great deal of my education, many different jobs that I have had, and for all the accommodations that I would not be entitled to if 504 had not been in place. 504 was enacting a great set of laws that only happened because all my disabled brothers and sisters, similar to other civil rights movements, refused to move from the federal building, and had the longest successful sit-in in history, to this day. Please listen to the link below, and think about what we can do together, and the awesome power of "people power."

504 Sit-in webcast

A Better Tomorrow

I hope that tomorrow will be brighter than today.


His sudden lack of faith, he said, cost him his military career and put his life at risk. Hall said his life was threatened by other troops and the military assigned a full-time bodyguard to protect him out of fear for his safety.

SANTIAGO, Chile (AP) -- The Simon Wiesenthal Center has strong evidence that a former SS member known as "Dr. Death" is in southern Chile or Argentina, a top Nazi hunter for the human rights organization said Tuesday.

Fire crews have been straining to cover 330 active California wildfires, many of which were ignited by a lightning storm more than two weeks ago. A heat wave forecast to linger in much of the state until the weekend is making the job all the more difficult. At least 23 homes and 25 other structures have been destroyed in the Big Sur area.

Monday, Monday

Today was a typical Monday. I had to tie up loose ends from the holiday weekend-and where did June go, anyway?

A Story that Tells it All.

Ok everyone, given that today is Sunday and a beautiful day, this story portrays awesome images in my mind of how what a diverse culture disability is but yet so normal.

>NPR.org, July 4, 2008 · The content of Seventeen magazine in Braille is
>exactly the same as Seventeen in English. There's no footnote breaking
>down what exactly is meant by Miley Cyrus' "look" nor extra explanation
>describing the makeover before-and-after images.
>
>This is perfectly fine with 14-year-old Kyra Sweeney of Santa Monica,
>Calif., who keeps a copy on her ultra-organized desk.
>
>"I get it for the articles," she explains, before acknowledging she's
>never come across a publication specifically for blind teens like herself.
>"I rely on my friends to tell me what to wear."
>
>A little over a week ago, Kyra had just finished her last day of eighth
>grade. But the academics were not over. On the following Saturday, she
>would compete in the competition to top all competitions for blind and
>visually impaired students: the Braille Challenge. Finalists from across
>the United States and Canada had worked their way through local and
>regional contests to make the cut. Lucky for her, it was to be held just
>across town at the Braille Institute of Los Angeles.
>
>The event is more intense in some ways than a spelling bee. Students
>compete in up to four categories — including the dreaded "speed and
>accuracy" test, which requires typing hundreds of words correctly in
>Braille. Dangling over Kyra's head were thousands of dollars in potential
>prizes plus the opportunity to add yet another gold star to her resume.
>
>Standing in her family's living room, Kyra recites a weekly schedule that
>reads like a newspaper's music section: lessons and recitals for choir,
>piano, flute, chamber orchestra. The week before, she spent her one "day
>off" performing for thousands at the Hollywood Bowl, alongside superstar
>flautist James Galway.
>
>"A lot of blind musicians have perfect pitch. I'm one of them, which is
>cool, I guess," she says and laughs.
>
>The bios of all the Braille Challenge participants — who range from
>first-graders to 12th-graders — are similarly impressive. Nine-year-old
>Cricket Bidleman was 4 when she was adopted from China. She learned
>English in a month, and Braille in three months. Nicole Torcolini, 18,
>created a computer program to make the periodic table of the elements
>accessible for the blind. And according to test proctors, last year, one
>participant was moonlighting for the FBI.
>
>"I liken it to Harvard's freshman class," says Dr. Stuart Wittenstein,
>superintendent of the California School for the Blind. "Most of these kids
>have never lost a competition." Consequently, Wittenstein often finds
>himself consoling parents. "It's often the first time that's happened, and
>we really have to talk about how the world is a tough place."
>
>Finding 'Normal'
>
>At the reception the night before the contest, however, conversations
>reveal that many of these kids are more concerned with appearing "normal"
>than "special." All but a few are the only blind student at their schools
>back home; being in the majority is a rare indulgence.
>
>"It's easier in some ways to be around blind kids than sighted kids," one
>girl confesses, "because you don't have to constantly prove yourself."
>
>This draws "yeahs" from four other girls, including Kyra and long-time pal
>Megan Bening of Minnesota, a vivacious, Diet Coke addicted blonde.
>
>Making friends at school is a struggle, Megan says, which is hard to
>believe, given that she keeps the people around her constantly laughing.
>
>The problem isn't that sighted kids are mean, she says matter-of-factly;
>it's that they are too nice. Paralyzed by political correctness, people
>often pretend that they haven't noticed she's blind, which adds a
>saccharine veneer to interaction.
>
>"It doesn't do any good to dance around the elephant in the room. It eats
>up too many brain cells," she advises.
>
>PC matters aside, Megan confesses that the main issue that has her nervous
>about starting ninth grade in the fall is her looks. Her "one honest
>friend" at school confessed to her that she doesn't have many "in"
>clothes: It's one of the first times she has come across a problem that
>she's not clear how to fix.
>
>Dirty Rumors
>
>Around the same time that Playboy in Braille temporarily went out of print
>in the 1980s, a nasty rumor began to circulate: Braille was going to die.
>It had nothing to with Hugh Hefner; rather, like radios and beepers, new
>technology was expected to undermine Braille's relevance. Blind and
>visually impaired individuals would soon carry around devices that could
>read and write for them, the thinking went, undermining the need for
>Braille.
>
>The rumors died down as it became apparent that technology and Braille are
>natural partners, according to Wittenstein, an outspoken advocate of
>Braille literacy. But questions about Braille's relevance lingered. In
>many ways, the National Braille Challenge represents an effort to refute
>those doubts.
>
>The contest is an opportunity for talented blind students to compete and
>get to know each other. But it's also a way to boost Braille's profile by
>tying its public image to achievement. Braille is used by only a small
>percentage of blind and visually impaired individuals, according to the
>stats.
>
>Sometimes, it's the parents who show reluctance to embrace Braille,
>Wittenstein says.
>
>"If you introduce your idea of Braille to them, it says, 'My child is
>blind, and maybe I have to start thinking of my child in a different
>way.'"
>
>Blind people are terrifying to the sighted world, says Wittenstein — who
>has full sight, but spends most of his time with blind students and
>friends — because they make people think, "If I lost my vision, how would
>I get around? How could I do my job?"
>
>For kids, however, he says the biggest obstacle is not the loss of vision
>— they find their own way of doing things — but the loss of the sighted
>world's expectations.
>
>The Competition
>
>The day of the competition, parents huddle in the hallways, straining to
>see their children through the windows in the doors of each testing room.
>One mother attempts to enter the classroom — perhaps to offer a final good
>luck squeeze — but is sternly asked to step back.
>
>At the signal of "go," the rapid click-clack-swoosh of Perkins Braillers
>takes over the building. It's a simple sort of typewriter, with a key for
>each of the six dots that make up the Braille code. Students rapidly type
>whatever the proctor or audio tape tells them. Five minutes in, pages
>covered in the raised bumps of the Braille code start streaming from the
>Braillers to the floor.
>
>Throughout the day, participants rotate through challenges that test some
>combination of spelling, reading comprehension, proofreading and
>graph-reading abilities.
>
>Although the atmosphere can be tense, the event lacks the cut-throat
>precision of the National Spelling Bee on ESPN. A girl runs out of paper
>during the speed-writing contest and taps her fingers impatiently as the
>moderator takes almost a minute — potentially costing her dozens of lost
>points — to offer her a new sheet.
>
>In another room, Cricket, last year's first-place winner in the youngest
>category, draws inquiries from confused room monitors.
>
>"Something is wrong with that girl," a sighted monitor tells the test
>proctor. "She's not typing."
>
>Another monitor inspects the situation and returns with an assessment:
>"No, she's just working so fast that you didn't see it."
>
>And the Winners Are …
>
>Good friends Kyra and Megan sit huddled together in the giant ballroom
>following a full day of competition.
>
>"We're hoping we split first place. We'll cut the PAC Mate in half," Kyra
>jokes, referring to the digital Braille computer system awarded to winners
>in each age group. The PAC Mate is a sort of digital Perkins laptop,
>complete with GPS, Internet hookup, and the ability to immediately
>translate between Braille and text.
>
>All eyes are on the pair as the announcer (actor Mark Hamill of Luke
>Skywalker fame) begins: "And the third-place winner in the Junior Varsity
>category is …. Kyra Sweeney." Kyra floats up to the stage. Megan does not
>place.
>
>Cricket, who at age 9 stands about half as tall as most of her
>competitors, takes second place in her age category. As she fields praise
>from her fans, her one hand keeps reading the ceremony program.
>
>How did it feel to win?
>
>"Normal," she says, matter-of-factly.

What an incredible true story!

The ups and downs of starting your own business.

When I started Dare To Dream Attendant Services in April of '05, I sat in a corner of the library for five hours and composed a business plan. After consulting with the SBA and the Renaissance Entrepreneurship Center, It wasn't long before quality homecare when you need it most was not just my company tag line but it began to take over my life. A lot of what I have learned in business has come from trial and error and the field of homecare keeps growing and the knowledge that I need to know will never end. I could spend weeks and weeks going to conferences but I feel a much greater need to keep helping my clients and not get out of touch with the community.
I have decided recently that I want to get a house for people who are developmentally disabled and who want to transition intro community living. There is always a constant need to grow and find ways to help more people. We are also looking into medical benefits for our staff and building a really cool database. I would love to see investors who are interested in a socially responsible business that can truly grow and expand. I embarking on a letter-writing campaign and would love to get an investor to help in the purchase of a house and a van to assist folks who need transportation.
I hope that everyone had a good 4th of July yesterday!
Daretodreamattendantservices.com

Yearning for Summer Camp

It is always towards the end of June that I begin to miss Skylake Ranch Camp. This was not just a place for a kid to escape to, and learn and make friends, and all that stuff. For me, today, it has a much deeper meaning. When you are young and have a physical disability, you do not understand the slight actions of people not wanting to hang out with you. Skylake Ranch Camp (SRC) made me feel right at home.

There were never any questions about if I could or could not do something. It was always just "how can we include Nick?" And people would come up with very creative ways to help me to get to the top of a mountain. That is what three counselors allowed me to do. They literally carried my stroller up the 317 feet of steps and mist. I remember when my friends and I finally got to the top. All of a sudden, there was a great peace, and everyone became silent. We looked over the edge, and I remember seeing the whole valley. This was 22 years ago, and these memories are still vivid in my mind, and help me remember that I want to start a summer camp for all to enjoy!

Elliot's Birthday

My dog will be older than me (in dog years) on July 11th. He will be eleven, and his present will be his old girlfriend, Ellen, coming all the way from SF on the 17th to see him. For two and a half years they would spend a lot of time together, and he would be perched at the door, waiting for her arrival.

Job Offer

Hi,I am looking for someone to help me with my personal care on the weekend I need someone to cover my 5PM-11PM shift that is on Saturday and Sunday and Also looking for someone to cover a overnite shift that from 11PM-9AM Friday and Saturday. I need someone that can commite there selfs to their shifts be on time be trustworthy and reliable.Saturday,Sunday 5PM-11PM would be helping me with dinner and the other things that I do in the evening and also help me get ready for bed.(YOU NEED TO BE ABLE TO LIFT 90 LBS)The overnite shift you would need to be able to roll me. If this sounds like a job that you may be interested in then please E mail back with your name and number and I will give you call back so that we can set up an interview. Please do not waste my time if you don't think that you can do the job Please don't apply

Back From LA

Lots of food, lots of drinks, lots of talk of Grandma, lots of friends and relatives I've never seen before, and I am back from LA.

I even got a new book. Hope you all will follow with comments about blogs to come...

Nick

A Few Words

Busy.

Tired.

Getting ready to go to LA.

Wondering what's in store?

Parents With Kids With Disabilities

Something you all should read.
This should be at the front entrance of every social service agency, including the regional centers, and IHSS!

Welcome To Holland
by
Emily Pearl Kingsley

I am often asked to describe the experience
of raising a child with a disability -
to try to help people who have not shared
that unique experience to understand it,
to imagine how it would feel.

It's like this:
When you're going to have a baby it's like
planning a fabulous vacation trip - to Italy.
You buy a bunch of guidebooks and make your
wonderful plans. The coliseum.
The Michaelangelo's David.
The gondolas in Venice.
You may learn some handy phrases in Italian.
It's all very exciting.

After months of eager anticipation the day
finally arrives. You pack your bags and
off you go.
Several hours later, the plane lands.
The flight attendant comes and says,
'Welcome to Holland.'

'Holland?! you say.'
'What do you mean, Holland?
I signed up for Italy!
I'm supposed to be in Italy.
All my life I've dreamed of going to Italy.'

But there's been a change in the flight plan.
They've landed in Holland
and there you must stay.

The important thing is that they haven't taken
you to a horrible, disgusting, filthy place,
full of pestilence, famine and disease.
It's just a different place.

So you must go out and buy new guidebooks.
And you must learn a whole new language.
And you will meet a whole new group of
people you would never have met.

It's just a different place.
It's slower-paced than Italy,
less flashy than Italy. but after you've
been there for a while and you catch your
breath, you look around, and you begin to
notice that Holland has windmills,
Holland has tulips,
Holland even has Rembrandts.

But everyone you know is busy
coming and going from Italy,
and they're all bragging about
what a wonderful time they had there.
And for the rest of your life,
you will say,
'Yes, that's where I was supposed to go.
That's what I had planned.'

And the pain of that will
never, ever, ever go away,
because the loss of that dream
is a very significant loss.

But if you spend your life mourning
the fact that you didn't get to Italy,
you may never be free
to enjoy the very special,
the very lovely things about Holland.