Tuesday, June 30, 2009

New writing I would love feedback

One of “those kind of guys.”
As I sit down to write this, I do so with a bit of apprehension. I am not one who likes to look at my own thoughts, but in its own right, over time, I have heard that the process is healing, and opens up a lot of both emotions and opportunities.
Day to day activities become so routine. My true passion has always been to help people through communication and understanding. Going back to my earliest memories, I was always an advocate, and always will be. The advocacy from my memory started on a beach trip I had with my mother. I was beginning to question at age 5 why I was different from the rest of them. I asked, “Mom, why did I come out early?”
She didn’t have time to respond before I blurted out, “I know, I wanted to see the world earlier than anyone else!” Mom then said, “What did you say?” From that moment on, I realized that my disability would always be a part of my life.
Mom and Dad put me through a lot of intense therapy to get their son to “walk.” Well, walking is one thing, but when it is like moving down St. Helens, it turns into a difficult, time consuming process. This went along with hours of other types of various therapies (physical, occupational, recreational, speech, bio feedback, Feldenkrais, functional electrical stimulation, [not electroshock therapy] etc. ) I also spent Kindergarten through 2nd grade in special education.
Special education in 1979 and 1980 was held in the back of a trailer behind where the “normal” kids went to school. I remember the long folding tables with cassette players and big head phones. I remember listening to ABCs and numbers in Spanish and English over and over again. To get me to use a computer, a round disc pressure switch was placed behind my head and a light board would scan through letters, numbers, etc. and I would have to push the button to make the light light up. In the future, this would lead to word prediction technology. World renowned scientist Steven Hawking has been using this technology since I started in 1980. Not only did I learn this technology very quickly, but the special ed administration was tricky, and decided to have me teach my friend who could not communicate, to use the same method to operate a communication device. My friend and I would always ride home on the bus together as our wheelchairs clanked, because of the number of wheelchairs on the bus, and the sheer weight of all those wheelchairs. The rest of special ed daytime activity included being pulled out of class at least 3 times a day for different forms of therapy. I also spent a lot of time in the time out room. They like to put you in there when you make too much noise, or are too disruptive. All of my wailing and growing pains must have been starting, because I spent more time out room than I care to remember.
Luckily, my parents realized very quickly that I wasn’t learning too much in special ed, and at around that time, my dad got a job transferred back to the east coast, where I spent the next 2 years at a Montessori school where I was the only person with a disability. Then it was back to California again, and I was about ready to enter the 4th grade. Mom and Dad had a rule: don’t ever treat Nicky any different from any other kids. This is when I met my best friend, Curtis Miller. My mom and dad paid for an assistant to go to school with me, because the private school did not legally have to pay for anything. Phil was a gentle, strong, tall, energetic, loving individual who happened to be working as a janitor at the school. At the request of the principal, Phil was introduced to my mother, and we were told to go outside and play. We played cops and robbers. Did I mention that Phil was African American, and this was probably not politically correct, and it probably offended Phil a little? Phil was the greatest. He would play football with me and take me out of the wheelchair and run with me and the ball. We would play capture the flag, and whenever someone would capture his flag or mine, we would both go stumbling on the ground, even in the Baltimore snow, and because Curtis was my best friend, I would always try to tackle him. Phil got down on the ground with me, and joined our imaginary rock club, where we would dig in the ground, looking for imaginary precious rocks. After these 2 years, I really had some knowledge under my belt as far as kids go. I knew the realities of not being able to go over to people’s houses, because they were not accessible. I knew that Curtis’ parents and a few other parents really cared for me. I didn’t realize this until many years later, but when they had me over to spend the night, their parents had to take care of me. I know that because of my cerebral palsy (CP), I was not your typical sleep over.
Junior High and high school were very difficult years for me. They represented my social influx into the world of people who don’t like looking at wheelchairs, more or less having to talk to them. Making friends was always more challenging, because of the intense fear that I had, not around socialization, but the real world “no’s” and the letdowns. I was a late bloomer, and I think I only dated once in high school. I went to someone else’s prom, but not my own. I knew a lot of people, and a lot of people knew me. We were more acquaintances. Then, in 1993, I became Jr. class president, and received the high school volunteer award.
My high school graduation was probably a lot more meaningful to me than my college graduation. I got to speak around my whole 3000 student body about how I had learned so much from peer counseling, and how to talk to other people.
Even back then, I was an advocate. In high school, I remember getting trapped in an elevator after a play. My mom and I had already given numerous warnings that the elevator was going to break, so I did the unthinkable: I got stuck halfway up, between floors, and I had to call the fire department. I was so angry, that I spent the next 3 hours banging my head against the pressure switch, writing a letter to the school paper about the injustice, and embarrassment of the whole experience. My letter was in the paper, and I was on the front page.
Shortly after seeing a documentary about Ed Roberts, and the Rolling Quads, I decided I wanted to get my degree from UC Berkeley and had no idea how my life would change. I hope that this book begins to explain the nuances that go along with growing up, activism, school, and all of life’s other quirks. I dedicate this book to the power of activism, and the rights of all people. Because of my own disability, I relate very well to the disability rights movement, and that is where I focus a majority of my advocacy. I would like to thank my parents for being the ultimate advocates, and for the people whom I have met over the years who taught me about self advocacy, and how to advocate for others.

Saturday, June 20, 2009

Thinking

well.. in this life my mind seems to be the only thing that holds me together so I try and work it like a muscle.

Sunday, June 14, 2009

ACT4IHSS Update June 14, 2009

I spent the day organizing with Hannah and Joy for the Monday commitee vote on IHSS cuts. We are both getting ready to go down to Sac tomorrow. If needbe Act4Ihss can use my office the week that I am gone. Please Call my office if you need a space to organize. Also, for those that are going to Sac. in the next few days/wks please be advised that your para transit should work in Sacramento. This is what their website says. You might hear from me later on tonight before I leave or you will definately get updates from me tomorrow. Keep the fire burning.

Nick

http://act4ihss.blogspot.com

Saturday, June 13, 2009

June 13, 2009

Getting ready for my trip to Sac. Went to a memorial for Scott Leubkin. Got a new pamphlet for IHSS. Getting really excited for the upcoming week.

Friday, June 12, 2009

Mixed Signals

As I end my day there is a sense of confusion. The IHSS vote is scheduled for early Monday on whether to lower the wage for in home supportive services... Demonstrations are planned but disorganized... no room number or location for puplic comments. So much planning to be done. Saturday should be interesting! Keep the fire burning.

New wage to be $10.20 /hr for Alameda Co. July 1st, 2009

[From the Berkeley Disabled Yahoo group]

This statement is supposed to go on every paycheck/timesheet issued to an
Alameda County IHSS provider until July 15. I was in Charles Calavan's
office on June 4 when he put in that request to Rancho Cordova.

Per phone conv this evening, Susannah McDevitt of SEIU-ULTCW (Local 6434)
the union has filed a grievance with the county and will go so far to sue
them for violation of contract which states that the county will use Federal
Stimulus dollars to replace what the State taketh away. Let's not hold our
breath. At best it will be retroactive.

meanwhile, the real threat is looming as of October 1, when the proposal is
to reduce State contribution to IHSS to $8/hr, threatening our health
benefits as well. Oh, and that's just for those of us who still have jobs.
most (81% in Alameda County, probably 90% statewide) of current IHSS
recipients will be rendered ineligible by new criteria. That criteria is the
AVERAGE functional index score, which was never designed to measure
eligibility for services. Hello, California? Are you listening?

Nick Feldman called a last minute meeting in his office this afternoon where
a handful of advocates discussed strategies. We agreed that we need to piggy
back on what other groups are doing and join in. We are waiting for
callbacks for more information. Tonight I heard from Susannah from SEIU. in
addition to the information regarding Ala. Co, she told me that they just
learned today that the Conference Committee will be voting on Monday June 15
on the IHSS wages, benefits, and eligibility criteria. They will have a bus
(probably not w/c accessible) leaving their offices at 440 Grand Ave at 5:00
am, unless they hear of a specific time that they will be voting on our
issue in which case it may be later. Stay tuned for Action for IHSS plans
for Monday in Sacramento.

There may be a direct action event on Thursday but given this latest news of
the hearing being on Monday, there may be no point. I am waiting for
information on that and will post that and other updates on the Action for
IHSS listserve. You can join by sending an email to
act4ihss-subscribe@yahoogroups.com.

thanks for asking, gmmper.

hannah jo.

ps: one little thing that really gets me is that for every dollar that the
Terminator chops from our wages, the State only saves a quarter. (someone
told me this - can't explain how that works).

Thursday, June 11, 2009

Decisions

Hi all,

After Marty resigned, I have decided to take next Monday through Thursday with my own funds if I cannot get any donations, and go lobby in Sacramento and make our voices heard. I am very excited to know that on Thursday there will be a direct action. All my clients depend on IHSS and the regional center (another 7% cut across the board for providers). For the first time in my life as an advocate, I need to find hope that people believe in social change, and that we can still make a difference, and stop these cuts. I do not want to see mass graves of deceased disabled people who have died in their own filth and waste because instead of going to a nursing home, they would rather live in their own homes at the sacrifice of their lives.

I hate the feeling of the hundreds of thousands of providers who have spent years fighting for a living wage, and health insurance, only to be set back...when I got involved, Hannah and I went to San Francisco and Sacramento for the wages of IHSS to go up, and to get health insurance. The time has come to get out from behind our computer screens and do what needs to be done. Remember, it took all those people climbing up the stairs to get the ADA to pass. It took thousands of assistants, but we also got Olmstead through the courts. And now we have the biggest fight of our lives-and I really do mean OUR lives-no one is around to call themselves the leader, so we all must join together and be each other's leaders. We must realize that we have been called out on all of our vulnerabilities and this will be the hardest fight we've ever had, but we must prevail, if not for ourselves, then for the voices that cannot fight.

Everyone has their role. We must inform people to keep writing letters, to keep making phone calls, to keep talking to the neighbors, and to keep spreading the word. We have to let the secret out of the bag that we will not take this lackadaisical and apathetic approach as our lives are slowly getting stripped of dignity and respect.

I think the mood right now is scared to death all over. I think we have no choice but to take direct action. Psychologically this has done something weird to all of us. I know I personally could use some phone calls of assurance that other people are willing to demonstrate and advocate. I feel this dark cloud in my stomach of just mere basic survival and losing control. Institutions for some people are not out of the question, and that right there is justice for one, justice for all, and when what I mean to say is that institutions are going to be overcrowded, and understaffed, and some of my own friends can't end up there because the feeling of depression alone will kill them. I worry about the SSI that people use to put food on their tables, and most of all, the children. The children of our future, with and without disabilities will suffer, and so will families. I am really upset and concerned that we are not doing more. I don't mean just going to Sacramento, I mean having meetings with each other, developing phone trees, having guerrilla theater, and most of all, screaming "WE WON'T TAKE THESE CUTS ANYMORE!"

Getting all of the non-profits and ILCs involved is critical as well. I am hoping that Thursday will bring about some real change. I don't like doing this, but I will be very happy to open up my home for meetings all weekend. I just need to know the 5 Ws. Free our people now!

Nick

Wednesday, June 10, 2009

Olmstead Anniversary

Olmstead's Anniversary and Disability Civil Rights.
Information Bulletin #287 (6/09).

June 22, 2009, marks the 10th anniversary of the Supreme Court's Olmstead ruling for disability civil rights. Some people have made an analogy between the Olmstead decision and the Brown v. Board of Education decision in 1954. Let's compare them.

Nearly ten years after the black civil rights movement's victory in Brown, incremental, albeit not overwhelming, progress had occurred. Nonetheless, some people thought the black civil rights struggle had stalled.

Nearly ten years after the disability civil rights movement's victory in the Olmstead decision, incremental progress has occurred as well.

But still, more than 313,000 people with disabilities in nursing homes (23% of the total) want to live in the community, and yet are denied their civil right to integration, primarily because of Medicaid's historical bias in favor of segregation. Many of them are on "waiting lists" for their civil rights. Can you imagine a "waiting list" for black civil rights?

While the black civil rights movement achieved its share of victories, it took the March on Washington for Congress to enact both the Civil Rights Act of 1964 and the Voting Rights Act of 1965. And even then, it took the U.S. Department of Justice to take the right actions and really enforce these civil rights.

Remember that Title VI of the 1964 Civil Rights Act prohibited federal subsidies for racially segregated institutions.

So why not similarly rectify segregation for people with disabilities? Does not the Olmstead decision, together with the ADA/Section 504, already provide the necessary handles to prohibit federal subsidies to States that limit services only to segregated institutions, thus denying real choices that would enable 313,000 people to reside in the community.

Some say the disability civil rights issue of ending unnecessary segregation must wait. But as Dr. King wrote, "For years now I have heard the word 'Wait.' It rings in the ear of every Negro [person with a disability who is unnecessarily institutionalized] with piercing familiarity. This 'Wait' has almost always meant 'Never'."

Last year when some disability advocates wanted an explicit reference to ending unnecessary segregation included in the ADA Restoration Act, they were politely told that other issues were the focus: "wait."

This year when people with disabilities with the lowest incomes, who are entirely dependent on Medicaid, have demanded to end unnecessary segregation by having the Community Choice Act included in any health reform legislation, they have been told that the CCA is not the focus of health reformb"Wait."

The "Wait" to end unnecessary segregation of people with disabilities in institutions may soon turn into a "Never" for civil rights.

How hard is it to understand and accept that, but for the denial of civil rights, many institutionalized people with disabilities would live in the community with adequate programs and supports, especially since its cheaper for the federal government and states to provide such programs and supports in the community?

How hard would it be to enact a Disability Civil Rights Act in 2009 to end unnecessary segregation just as Congress did with the Civil Rights Acts in the 1960s? A Disability Civil Rights Act in 2009 to end segregation could not be as inflammatory as enacting the Voting Rights Act of 1964.

Will U.S. Attorney General Holder look to how U.S. Attorney General Robert Kennedy addressed ending discrimination in the 1960s? General Holder could start by looking at the 313,000 people with disabilities living in nursing facilities who have said they do not want to be unnecessarily institutionalized. He could inform states that Olmstead and the ADA/504 require providing real choice for people with disabilities who are segregated and want to live in the community.

What do we have to do to create the atmosphere of the 1960s for the disability civil rights struggle in 2009?

Steve Gold, The Disability Odyssey continues

Tuesday, June 9, 2009

Thoughts of whats to come...

http://www.youtube.com/watch?v=_HZq62nqE78

Monday, June 8, 2009

My Barriers With Lodging

My journey to Sacramento to stop budget cuts is only being hindered by the high cost of motels and hotels in and around the Capitol.

Public Furor Over Budget Cuts for Seniors and Disabled

Check out this article. Budget cuts...

Budget Cuts and My Participation

Dear Friends,

As I sit here at my computer, I am pondering the new budget cuts and how they will affect people with disabilities and the people who provide personal care for them. As a person who has a disability myself, I have cerebral palsy and I am both a client of In Home Supportive Services (I.H.S.S.) as well as the regional centers that care for people with developmental disabilities.

The governor has proposed a two dollar an hour cut to IHSS and a reduction in hours to clients who do not make the functional scale will lose hours. Right now the cuts for IHSS depend on the county you live in.

The department of developmental disability (DDS) who control the 21 regional centers that provides services to clients who have cerebral palsy, epilepsy, mental retardation, autism, deaf and hard of hearing, have already undergone a 3% cut in March of this year. The governor is proposing another 7% cut effective July 1st. This is to all providers and service providers for all regional centers.
Ultimately, I am under the impression that these cuts are not legal under the Olmstead Act as well as other disability rights. But more importantly I believe that the quality of life of people with disabilities will suffer and it will move us back in time to a place where institutions were the norm and people with disabilities were never integrated into society.
Today people with disabilities get educated, work, have relationships, and most importantly be an everyday part of society. The governor is putting this all at risk.

In lieu of the resignation of several major disability advocates, I would like to ask for donations and your involvement of allowing me the financial ability to go to Sacramento. I will also need all of you to demonstrate alongside of me and try one last time to maintain what we have now. I want to let you all know that I am a working man and feel its necessary to assert all of my time and energy to this critical cause. I hope all of you share my compassion and that you will act to make a better quality of life for all people because if we are not successful in getting these cuts removed, we can only blame the people who do nothing. In advance I thank you for your support but more importantly, I urge you to contact me, come to Sacramento, and help me convince governor Schwarzenegger that these cuts violate civil rights and the well beings of people lives.

Donations can be taken through Paypal.com, and the email address is daretodream94704@yahoo.com

Thank you all for your support,

Nicholas Feldman