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.
Showing posts with label advocacy. Show all posts
Showing posts with label advocacy. Show all posts
Tuesday, June 30, 2009
Friday, June 12, 2009
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).
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@
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
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
Monday, June 8, 2009
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
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
Tuesday, June 17, 2008
Does This Go Too Far?
The ADA has brought Americans with disabilities a long way, and there are still a great many problems with the law. This new proposal seems to have not enough oversight, and not enough education. Telling small business owners that they must accommodate is different than saying, "If you accommodate, you'll have more customers, and your business will reach a bigger audience."
I also have a feeling that the restaurant industry, the entertainment industry will be all in a tizzy over this one. I say that universal design laws known for new housing across America would be a lot more useful than this legislation. I think the regulations about service animals sets a dangerous precedent and can be misinterpreted. Bush trying to be like Daddy, lol.
By Robert Pear
I also have a feeling that the restaurant industry, the entertainment industry will be all in a tizzy over this one. I say that universal design laws known for new housing across America would be a lot more useful than this legislation. I think the regulations about service animals sets a dangerous precedent and can be misinterpreted. Bush trying to be like Daddy, lol.
By Robert Pear
WASHINGTON: The Bush administration is about to propose far-reaching new rules that would give people with disabilities greater access to tens of thousands of courtrooms, swimming pools, golf courses, stadiums, theaters, hotels and retail stores.
The proposal would substantially update and rewrite federal standards for enforcement of the Americans With Disabilities Act, a landmark civil rights law passed with strong bipartisan support in 1990. The new rules would set more stringent requirements in many areas and address some issues for the first time, in an effort to meet the needs of an aging population and growing numbers of disabled war veterans.
More than seven million businesses and all state and local government agencies would be affected. The proposal includes some exemptions for parts of existing buildings, but any new construction or renovations would have to comply.
The new standards would affect everything from the location of light switches to the height of retail service counters, to the use of monkeys as "service animals" for people with disabilities, which would be forbidden.
The White House approved the proposal in May after a five-month review. It is scheduled to be published in the Federal Register on Tuesday, with 60 days for public comment. After considering those comments, the government would issue final rules with the force of law.
Already, the proposal is stirring concern. The United States Chamber of Commerce says it would be onerous and costly, while advocates for disabled Americans say it does not go far enough.
Since the disability law was signed by the first President Bush, advances in technology have made services more available to people with disabilities. But Justice Department officials said they were still receiving large numbers of complaints. In recent months, the federal government has settled lawsuits securing more seats for disabled fans at Madison Square Garden in New York and at the nation's largest college football stadium, at the University of Michigan.
The Census Bureau says more than 51 million Americans have some kind of disability, with nearly two-thirds of them reporting severe impairments.
The proposed rules, under development for more than four years, flesh out the meaning of the 1990 law, which set forth broad objectives. The 215,000-word proposal includes these new requirements:
¶Courts would have to provide a lift or a ramp to ensure that people in wheelchairs could get into the witness stand, which is usually elevated from floor level.
¶Auditoriums would have to provide a lift or a ramp so wheelchair users could "participate fully and equally in graduation exercises and other events" at which members of the audience have direct access to the stage.
¶Any sports stadium with a seating capacity of 25,000 or more would have to provide safety and emergency information by posting written messages on scoreboards and video monitors. This would alert people who are deaf or hard of hearing.
¶Theaters must provide specified numbers of seats for wheelchair users (at least five in a 300-seat facility). Viewing angles to the screen or stage must be "equivalent to or better than the average viewing angles provided to all other spectators."
¶Light switches in a hotel room could not be more than 48 inches high. The current maximum is 54 inches.
¶Hotels must allow people with disabilities to reserve accessible guest rooms, and they must honor these reservations to the same degree they guarantee other room reservations.
¶At least 25 percent of the railings at fishing piers would have to be no more than 34 inches high, so that a person in a wheelchair could fish over the railing.
¶At least half of the holes on miniature golf courses must be accessible to people using wheelchairs, and these holes must be connected by a continuous, unobstructed path.
¶A new swimming pool with a perimeter of more than 300 feet would have to provide "at least two accessible means of entry," like a gentle sloping ramp or a chair lift.
¶New playgrounds would have to provide access to slides, swings and other play equipment for children who use wheelchairs.
The Justice Department acknowledged that some of the changes would have significant costs. But over all, it said, the value of the public benefits, estimated at $54 billion, exceeds the expected costs of $23 billion.
In an economic analysis of the proposed rules, the Justice Department said the need for an accessible environment was greater than ever because the Iraq war was "creating a new generation of young men and women with disabilities."
John Wodatch, chief of the disability rights section of the Justice Department, said: "Disability is inherent in the human condition. The vast majority of individuals who are fortunate enough to reach an advanced age will benefit from the proposed requirements."
By 2010, the department estimates, 2 percent of the adult population will use wheelchairs, and 4 percent will use crutches, canes, walkers or other mobility devices. Likewise, it said, as the population ages, the number of people with hearing loss will increase.
Under the 1990 law, businesses are supposed to remove barriers to people with disabilities if the changes are "readily achievable," meaning they can be "carried out without much difficulty or expense."
The Bush administration is proposing a safe harbor for small businesses. They could meet their obligations in a given year if, in the prior year, they had spent at least 1 percent of their gross revenues to remove barriers.
Curtis Decker, executive director of the National Disability Rights Network, a coalition of legal advocates, said: "Safe harbors make us very nervous. A small business could spend the requisite amount of money and still not be accessible."
Randel Johnson, a vice president of the United States Chamber of Commerce, said the proposed rules "are so long and technically complex that even the best-intentioned small business could be found out of compliance by a clever lawyer looking to force a settlement."
The Justice Department cited the "monetary cost cap" as one of several steps it was taking to limit the rules' impact on small businesses. But Johnson said he feared that courts would view the ceiling as a floor and tell businesses they should spend 1 percent of their revenues on removing barriers.
The proposed rules affirm the right of people with disabilities to use guide dogs and other service animals in public places, but they tighten the definition to exclude certain species.
When the existing rules were adopted in the early 1990s, the Justice Department said, few people anticipated the current trend toward "the use of wild, exotic or unusual species" as service animals.
The proposed rules define a service animal as "any dog or other common domestic animal individually trained to do work or perform tasks" for a person with a physical or mental disability.
Under this definition, the administration says, monkeys could not qualify as service animals, nor would reptiles; amphibians; rabbits, ferrets and rodents; or most farm animals.
Under the rules, a hotel, restaurant, theater, store or public park could ask a person with a disability to remove a service animal if the animal was out of control or not housebroken, or if it posed a direct threat to the health or safety of others.
By way of example, the rules say that a theater could exclude a dog that disrupted a live performance by repeated barking.
The rules confirm that people with disabilities can use traditional wheelchairs, power wheelchairs and electric scooters in any public areas open to pedestrians.
But shopping centers, amusement parks and other public places could impose reasonable restrictions on two-wheeled Segway vehicles, golf carts and "other power-driven mobility devices" used by those with disabilities.
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