Every year, beginning when I turned one year old, and my sister, then four, chastised our mother for not wanting to make a birthday for me, our mother made a big thing out of each of our birthdays, especially knowing that our father had to make his own birthday cake at age seven. She was wonderful at organizing and decorating for birthdays as well as all the holidays; Thanksgiving, Passover, Chanukkah, Washington's birthday, Valentine's Day. I was thinking that if she had been watching some of today's TV shows, she would have gone into business as a party organizer!
Mom passed away in 1992. I was 32 years old. Part of me was glad she had passed, because our relationship had been somewhat stormy, due to her critical nature and explosive temper. As a daughter, I was glad she was no longer in pain. Without her negativity around, my Feldenkrais teacher and I noticed that my healing was zipping along at a pace that was almost shocking. But as the holidays came and went, it began to dawn on me that the birthdays and holidays were no longer something I looked forward to.
My dad passed in 2007, and as we were very close, it was my most dreaded day when along with my cousin, I made the decision to turn off the life support, knowing that he did not want to be kept alive if he were not conscious. The past three birthdays and holiday seasons, have been times of depression for me. Daddy was a sweet man, kind to a fault, and I miss him terribly. I may have his spirit around me always, but the security, the wisdom, the quirky sense of humor, are no longer there for me to lean against in times of sadness and stress. Nobody ever prepares you for celebrating birthdays and holidays without dad or mom. Nobody tells you that the week before your birthday, or even your parent's birthdays, you will feel unassailably sad even though you don't know why. That's why it helps me to have an assistant who also lost her mom at a young age. She reminds me of that, and truly understands what it's like.
Tamar Mag Raine
Sunday, March 21, 2010
Wednesday, March 17, 2010
THE REAL SOURCE OF WASTE IN CALIF!
THIS KIND OF CRAP IS unspeakably stupid. It denigrates us --> the elderly, and people with disabilities as a class of people without rights, who could be defrauding the system. This Governor has had it in for us from day one! Long before 2 million Californians lost their jobs! You know, I should run for Governor, if for no other reason than to rebut this kind of wastefulness! Arnie wants to buy $5,000 cameras, (yeah you read that right, each one would cost $5,000!!!) such as they use in Iraq and border patrol between Mexico and the states that border it. A more common sense approach would be to use both the cameras and fingerprinting equipment located at DMV! That is IF it were really proven that there is fraud above 2 percent, which I doubt! Anyway, please read on!!! FOLLOW THE $$ TRAIL. I bet anything it's kickback. Gee whiz!
For Immediate Release Contact: Steve Mehlman
UDW Homecare Providers Union
916-804-2569 (cell)
Deborah Doctor
Disability Rights California
510/928-1768 (cell)
STATE PLANS TO SPEND MILLIONS TO PHOTOGRAPH IHSS CONSUMERS DESPITE LACK OF AUTHORITY OR PROOF OF WIDESPREAD FRAUD
Sacramento (March 17) -- Without any authority from the Legislature, the Schwarzenegger Administration is planning to purchase up to $5 million worth of military/security cameras to take pictures of the 450,000 seniors and people with disabilities who receive In Home Supportive Services (IHSS) homecare.
Last year, the Legislature approved the administration’s proposal that county social workers must fingerprint all IHSS consumers as part of a so-called anti-fraud initiative. However, the Legislature neither discussed nor approved photographing consumers. Nor has the administration provided any evidence of how much fraud would be stopped by photographing and fingerprinting these consumers; all IHSS consumers must be visited and assessed at home by county social workers before being approved for the program.
The “MorphoTrak” cameras are currently being used in Iraq and other military locations. According to their manufacturer, they are also recommended for, among other things, “border crossings, gang enforcement, and airport/maritime security.” The camera itself costs $4,200, plus hundreds of dollars more for docking stations and other equipment.
http://www.morpho. com/MorphoTrak/ MorphoTrak/ mt_products. html. Each $5,000 used to buy a “MorphoTrak” camera would purchase nearly 500 hours of IHSS homecare.
Herb Mayer, 79 year old IHSS consumer, chair of the IHSS coalition and a Korean war veteran, said “My social worker knows who I am without needing a $5,000 camera. How can the administration find money for these cameras but no money to keep the IHSS program going?”
The Administration has projected that it will need to purchase 600 to 1,000 of these cameras, costing between $3 million and $5 million. It has borrowed several of these devices from the manufacturer and has solicited Sacramento and San Diego Counties to use them in a pilot project beginning April 1. The District Attorneys in these two counties have been among the strongest proponents of the administration’s anti-fraud campaign. However, a recent report from Sacramento County found a total of only 19 potential cases of IHSS fraud out of 20,365 consumers.
Assemblymember Hector De La Torre (D- South Gate) said: “I am outraged that this administration is again targeting our lowest income seniors and people with disabilities as if they were criminals we need to monitor. How is that we can afford millions for cameras yet we continue to cut their services and the money they live on?”
"The Administration' s proposal to spend $5 million on cameras is ridiculous," said Assemblymember Dave Jones (D-Sacramento) . "The money for each $5,000 camera could instead be used for 500 hours of IHSS care. The Administration has asked Sacramento County to begin a pilot program with loaner cameras on April 1. I am calling on Sacramento District Attorney Jan Scully not to participate in this misguided program."
Assemblyman Alberto Torrico (D-Fremont) states: ”I understand the budget crisis - and I understand that there will be no savings which begin to outweigh the cost of these cameras. When social workers are being laid off and poor elderly Californians are going without services which keep them safe, how can this administration even be considering buying $5,000 cameras?”
“The Governor has once again proposed diverting money from this valuable and cost-effective program”, says Senator Leland Yee (D-San Francisco/San Mateo). “In addition to his years of budget cuts and criminalizing IHSS workers and their clients, this year he proposes to spend scarce public funds on military-style cameras. I will continue to oppose all reductions to IHSS, especially those which deviate from the core mission of providing life-saving assistance to our vulnerable populations.”
"This Administration' s misguided attack on alleged fraud in the IHSS program has already caused major disruptions to IHSS services for 450,000 elderly Californians who depend on these services," said Senator Mark Leno (D-San Francisco). "The small investment in home support for the elderly keeps consumers out of expensive nursing homes and saves the state money. We intend to use our legislative oversight power to ensure the Governor does not waste government resources and harm elderly Californians who desperately need In Home Support Services."
For Immediate Release Contact: Steve Mehlman
UDW Homecare Providers Union
916-804-2569 (cell)
Deborah Doctor
Disability Rights California
510/928-1768 (cell)
STATE PLANS TO SPEND MILLIONS TO PHOTOGRAPH IHSS CONSUMERS DESPITE LACK OF AUTHORITY OR PROOF OF WIDESPREAD FRAUD
Sacramento (March 17) -- Without any authority from the Legislature, the Schwarzenegger Administration is planning to purchase up to $5 million worth of military/security cameras to take pictures of the 450,000 seniors and people with disabilities who receive In Home Supportive Services (IHSS) homecare.
Last year, the Legislature approved the administration’s proposal that county social workers must fingerprint all IHSS consumers as part of a so-called anti-fraud initiative. However, the Legislature neither discussed nor approved photographing consumers. Nor has the administration provided any evidence of how much fraud would be stopped by photographing and fingerprinting these consumers; all IHSS consumers must be visited and assessed at home by county social workers before being approved for the program.
The “MorphoTrak” cameras are currently being used in Iraq and other military locations. According to their manufacturer, they are also recommended for, among other things, “border crossings, gang enforcement, and airport/maritime security.” The camera itself costs $4,200, plus hundreds of dollars more for docking stations and other equipment.
http://www.morpho. com/MorphoTrak/ MorphoTrak/ mt_products. html. Each $5,000 used to buy a “MorphoTrak” camera would purchase nearly 500 hours of IHSS homecare.
Herb Mayer, 79 year old IHSS consumer, chair of the IHSS coalition and a Korean war veteran, said “My social worker knows who I am without needing a $5,000 camera. How can the administration find money for these cameras but no money to keep the IHSS program going?”
The Administration has projected that it will need to purchase 600 to 1,000 of these cameras, costing between $3 million and $5 million. It has borrowed several of these devices from the manufacturer and has solicited Sacramento and San Diego Counties to use them in a pilot project beginning April 1. The District Attorneys in these two counties have been among the strongest proponents of the administration’s anti-fraud campaign. However, a recent report from Sacramento County found a total of only 19 potential cases of IHSS fraud out of 20,365 consumers.
Assemblymember Hector De La Torre (D- South Gate) said: “I am outraged that this administration is again targeting our lowest income seniors and people with disabilities as if they were criminals we need to monitor. How is that we can afford millions for cameras yet we continue to cut their services and the money they live on?”
"The Administration' s proposal to spend $5 million on cameras is ridiculous," said Assemblymember Dave Jones (D-Sacramento) . "The money for each $5,000 camera could instead be used for 500 hours of IHSS care. The Administration has asked Sacramento County to begin a pilot program with loaner cameras on April 1. I am calling on Sacramento District Attorney Jan Scully not to participate in this misguided program."
Assemblyman Alberto Torrico (D-Fremont) states: ”I understand the budget crisis - and I understand that there will be no savings which begin to outweigh the cost of these cameras. When social workers are being laid off and poor elderly Californians are going without services which keep them safe, how can this administration even be considering buying $5,000 cameras?”
“The Governor has once again proposed diverting money from this valuable and cost-effective program”, says Senator Leland Yee (D-San Francisco/San Mateo). “In addition to his years of budget cuts and criminalizing IHSS workers and their clients, this year he proposes to spend scarce public funds on military-style cameras. I will continue to oppose all reductions to IHSS, especially those which deviate from the core mission of providing life-saving assistance to our vulnerable populations.”
"This Administration' s misguided attack on alleged fraud in the IHSS program has already caused major disruptions to IHSS services for 450,000 elderly Californians who depend on these services," said Senator Mark Leno (D-San Francisco). "The small investment in home support for the elderly keeps consumers out of expensive nursing homes and saves the state money. We intend to use our legislative oversight power to ensure the Governor does not waste government resources and harm elderly Californians who desperately need In Home Support Services."
Thursday, March 11, 2010
The WINTER PARALYMPIC GAMES IN CANADA
For the past two Olympic and Paralympic games, NBC has hardly mentioned the thousand or so ATHLETES with disabilities, which greatly infuriated me as well as many other PWD. I, for one, want to see these athletes in the sports section, instead of human-interest stories. I want to see what is possible when one has a dream to follow. NBC lost. Period. I refused to watch the able-bodied Olympics. Shrug, couldn't care less. Yawn, not interested. I wish some other US network would pick up the paralympics, so I don't have to watch it on my 17 inch monitor. HOW about it, ESPN? Surely these athletes would pull in more viewers than say, Poker?!
Anyway, for those interested, Here is the info on how to view the games:
Whistler, Canada - The official Internet channel of the International Paralympic Committee (IPC), ParalympicSport.TV, will be the best source for Canadians to get live coverage of the Opening Ceremony of the Vancouver 2010 Paralympic Winter Games.
Taking place on 12 March, the Opening Ceremony of the Paralympic Winter Games will be officially opened by Her Excellency the Right Honourable Michaelle Jean, Governor General of Canada, and promises to be a world-class celebration that will capture the unique spirit and heritage of Canada and the Host Region of the Games as well as show the amazing spirit of Paralympic athletes and great Canadians. More than 4,000 volunteer performers including dancers, singers, acrobats, athletes, and musicians will celebrate the compelling achievements of 506 athletes from more than 40 countries around the world at the Winter Paralympics in Vancouver.
At the end of the Opening Ceremony, the lighting of the Paralympic Cauldron will signal the official start of the Games and the end of the 10-day Vancouver 2010 Paralympic Torch Relay, which began on 3 March in Ottawa.
Rightsholders ZDF from Germany, SBS from Korea, TVE from Spain, France 2 from France and Sky New Zealand will also offer a live broadcast of the Opening Ceremony, whereas RTR (Russia), NRK (Norway) and NTU (Ukraine) will have a delayed coverage on 13 March. Canada's CTV will be broadcasting the Opening Ceremony the following day on 13 March at 14:00ET. NBC (USA) and ABC (Australia) will show highlights of the event.
Approximately two hours after the Opening Ceremony ends, the coverage will be available as Video on Demand (VOD) on ParalympicSport.TV for those who will not be able to watch it live.
ParalympicSport.TV will broadcast from the Vancouver 2010 Paralympic Winter Games everyday from 12-21 March 2010. All Paralympic sports will be covered in the programming, either live or delayed. This coverage will also be made available as Video on Demand (VOD) after the events on www.ParalympicSport.TV.
Become a fan on Facebook of ParalympicSport.TV at www.facebook.com/ParalympicSport.TV and stay up to date with the happenings in Vancouver and Whistler.
Get the full ParalympicSport.TV schedule and download the attachced pdf document.
For more information about the Vancouver 2010 Paralympic Winter Games, please visit www.vancouver2010.com.
Anyway, for those interested, Here is the info on how to view the games:
Whistler, Canada - The official Internet channel of the International Paralympic Committee (IPC), ParalympicSport.TV, will be the best source for Canadians to get live coverage of the Opening Ceremony of the Vancouver 2010 Paralympic Winter Games.
Taking place on 12 March, the Opening Ceremony of the Paralympic Winter Games will be officially opened by Her Excellency the Right Honourable Michaelle Jean, Governor General of Canada, and promises to be a world-class celebration that will capture the unique spirit and heritage of Canada and the Host Region of the Games as well as show the amazing spirit of Paralympic athletes and great Canadians. More than 4,000 volunteer performers including dancers, singers, acrobats, athletes, and musicians will celebrate the compelling achievements of 506 athletes from more than 40 countries around the world at the Winter Paralympics in Vancouver.
At the end of the Opening Ceremony, the lighting of the Paralympic Cauldron will signal the official start of the Games and the end of the 10-day Vancouver 2010 Paralympic Torch Relay, which began on 3 March in Ottawa.
Rightsholders ZDF from Germany, SBS from Korea, TVE from Spain, France 2 from France and Sky New Zealand will also offer a live broadcast of the Opening Ceremony, whereas RTR (Russia), NRK (Norway) and NTU (Ukraine) will have a delayed coverage on 13 March. Canada's CTV will be broadcasting the Opening Ceremony the following day on 13 March at 14:00ET. NBC (USA) and ABC (Australia) will show highlights of the event.
Approximately two hours after the Opening Ceremony ends, the coverage will be available as Video on Demand (VOD) on ParalympicSport.TV for those who will not be able to watch it live.
ParalympicSport.TV will broadcast from the Vancouver 2010 Paralympic Winter Games everyday from 12-21 March 2010. All Paralympic sports will be covered in the programming, either live or delayed. This coverage will also be made available as Video on Demand (VOD) after the events on www.ParalympicSport.TV.
Become a fan on Facebook of ParalympicSport.TV at www.facebook.com/ParalympicSport.TV and stay up to date with the happenings in Vancouver and Whistler.
Get the full ParalympicSport.TV schedule and download the attachced pdf document.
For more information about the Vancouver 2010 Paralympic Winter Games, please visit www.vancouver2010.com.
Doctors Are Not Gods
I absolutely go nuts when I hear that doctors and other "professionals" give babies labels and sentences! They scare the heck out of bewildered parents, telling them their baby will only live to be a teenager. They tell parents their babies are severely disabled, and they can never achieve anything. But EXPERTS can be wrong and OFTEN ARE! Each child is an individual, and may just need more time to develop than what is considered to be "normal".
I can speak directly from experience of one instance, when I was in 4th or 5th grade; I wanted to learn to play the piano, And when my mother mentioned this to the OT (occupational therapist) the OT said; "Oh, don't waste your money, she won't be able to do it". My mom bristled and said, "Well, Lisa wants to try, so that's what we will do!" So, over the summer, I took lessons, and practiced a lot. My teacher was a woman who had taught blind people to play by having them put their hands on top of hers, to learn how it should feel and look. It worked with me as well, and by the time school began in September, that OT had to eat her words! I was now able to move eight fingers independently and rapidly learned to type on an old IBM using most of my fingers. These days, I use fewer fingers for greater speed and accuracy.
It was the same when I wanted to take horseback riding lessons. This was back in the 60s, before it was widely known that horse riding could improve a child's sense of balance, self-confidence and improve the gait of kids with cerebral palsy. I just knew I loved horses. I had every book I could get my hands on; I loved Black Beauty, I loved all the other stories too. One day the horse I rode got hungry, and broke from a trot, which I was just beginning to learn, into a gallop! I hung on for dear life, as Betsy made her way back to the stables where she launched into her feed bag. My instructor was not far behind. My rear end hurt for a few days after, but by the next Sunday I was ready to go again.
I was also interested in Girl Scouts, because my mom was a life-long scout, and my sister was in a troop. I became a Brownie, and my mom and several other moms were co-leaders. I had a pretty bad scissors gait, and my speech was very poor, but that never stopped me from fully participating in my girl scout troop. I became a girl scoot several years later, and I eventually passed my older sister in the number of badges I earned. I earned fifteen plus the sign of the arrow and sign of the star. There were only two that they had to modify for me; Hiking and Swimming. Instead of doing a full hike, I walked 1/4 of the way. For Swimming, I only had to do two full lengths in a pool with just my mom and Pat Burch my wonderful Irish leader.
Pat knew I wanted to go roller skating, so one day, she came over and put me in all kinds of pillows, and she put skates on me and helped me skate the whole way around my neighborhood. I was elated! I didn't care that I was wrapped in pillows, I was having fun!
BUT there was a time, that made me so mad I cried for days... It was halloween and the troop was going to go to a haunted house, and the people there wouldn't let me go because they were afraid I'd fall and hurt myself. I think that was the first time I actually experienced closed doors, or discrimination by adults first-hand. I wailed for days. My mom understood why I was crying, but hated it and wanted me to stop. She had endured my screams when I was a very sick infant for the first 6 or 7 months of my life.
Despite being a girl scout, I always felt lonely because I was bused to a school for kids with disabilities, so I did not interact very much with the girls in my troop outside of scouts, with the exception of a little girl named Dodie. She was just a wee little thing, yet she tried on my leg braces several times, which were way big on her. I wonder now, what she told her family of me... I know my mom tried to keep me busy, but I knew the other scouts were having birthday parties to which I was mostly not invited to. My mom tried to encourage other girls at my school to become scouts. I remember her bringing me with her to talk to Elaine's mom. They lived in a poor section of Los Angeles and were Catholic; I recall seeing Jesus figures all over their walls. Anyway, Elaine's family wasn't interested.
I can speak directly from experience of one instance, when I was in 4th or 5th grade; I wanted to learn to play the piano, And when my mother mentioned this to the OT (occupational therapist) the OT said; "Oh, don't waste your money, she won't be able to do it". My mom bristled and said, "Well, Lisa wants to try, so that's what we will do!" So, over the summer, I took lessons, and practiced a lot. My teacher was a woman who had taught blind people to play by having them put their hands on top of hers, to learn how it should feel and look. It worked with me as well, and by the time school began in September, that OT had to eat her words! I was now able to move eight fingers independently and rapidly learned to type on an old IBM using most of my fingers. These days, I use fewer fingers for greater speed and accuracy.
It was the same when I wanted to take horseback riding lessons. This was back in the 60s, before it was widely known that horse riding could improve a child's sense of balance, self-confidence and improve the gait of kids with cerebral palsy. I just knew I loved horses. I had every book I could get my hands on; I loved Black Beauty, I loved all the other stories too. One day the horse I rode got hungry, and broke from a trot, which I was just beginning to learn, into a gallop! I hung on for dear life, as Betsy made her way back to the stables where she launched into her feed bag. My instructor was not far behind. My rear end hurt for a few days after, but by the next Sunday I was ready to go again.
I was also interested in Girl Scouts, because my mom was a life-long scout, and my sister was in a troop. I became a Brownie, and my mom and several other moms were co-leaders. I had a pretty bad scissors gait, and my speech was very poor, but that never stopped me from fully participating in my girl scout troop. I became a girl scoot several years later, and I eventually passed my older sister in the number of badges I earned. I earned fifteen plus the sign of the arrow and sign of the star. There were only two that they had to modify for me; Hiking and Swimming. Instead of doing a full hike, I walked 1/4 of the way. For Swimming, I only had to do two full lengths in a pool with just my mom and Pat Burch my wonderful Irish leader.
Pat knew I wanted to go roller skating, so one day, she came over and put me in all kinds of pillows, and she put skates on me and helped me skate the whole way around my neighborhood. I was elated! I didn't care that I was wrapped in pillows, I was having fun!
BUT there was a time, that made me so mad I cried for days... It was halloween and the troop was going to go to a haunted house, and the people there wouldn't let me go because they were afraid I'd fall and hurt myself. I think that was the first time I actually experienced closed doors, or discrimination by adults first-hand. I wailed for days. My mom understood why I was crying, but hated it and wanted me to stop. She had endured my screams when I was a very sick infant for the first 6 or 7 months of my life.
Despite being a girl scout, I always felt lonely because I was bused to a school for kids with disabilities, so I did not interact very much with the girls in my troop outside of scouts, with the exception of a little girl named Dodie. She was just a wee little thing, yet she tried on my leg braces several times, which were way big on her. I wonder now, what she told her family of me... I know my mom tried to keep me busy, but I knew the other scouts were having birthday parties to which I was mostly not invited to. My mom tried to encourage other girls at my school to become scouts. I remember her bringing me with her to talk to Elaine's mom. They lived in a poor section of Los Angeles and were Catholic; I recall seeing Jesus figures all over their walls. Anyway, Elaine's family wasn't interested.
Friday, March 5, 2010
Standing On The Mountaintop
Standing on the mountaintop,
I see children everywhere,
Being loved and gently nurtured
To become the special people they
Are meant to be.
So, please stop belittling the children,
Stop hitting and abusing your children,
Your sweet, precious children,
Let’s clean the air and land,
Let’s get the chemicals out of our food,
Let’s stop drugging our children with Ritalin.
Let them be healthy and run around.
Some children will be gifted in the arts,
Some will paint the sky green,
Some will be music makers,
Some will build the new paradise cities of the future,
Some will rock the world in science,
While others may lag behind,
If we love and nurture all the children,
Eventually all will succeed,
Standing on the mountaintop of the future,
I see children running and playing everywhere,
Let them play all they want
For it will help them become
The great men and women
They were meant to be.
So, never break a child’s heart,
Never tell them they cannot succeed.
Please encourage all their creativity......
Yes, I’m standing on the mountaintop of the future,
Breathing clean, fresh air, and all around me is
A bustling, golden, new Paradise city.
The water is pure again,
The fresh air sparkles,
And the land is once again healthy.
(C) 2007 Tamar Raine
Standing on the mountaintop,
I see children everywhere,
Being loved and gently nurtured
To become the special people they
Are meant to be.
So, please stop belittling the children,
Stop hitting and abusing your children,
Your sweet, precious children,
Let’s clean the air and land,
Let’s get the chemicals out of our food,
Let’s stop drugging our children with Ritalin.
Let them be healthy and run around.
Some children will be gifted in the arts,
Some will paint the sky green,
Some will be music makers,
Some will build the new paradise cities of the future,
Some will rock the world in science,
While others may lag behind,
If we love and nurture all the children,
Eventually all will succeed,
Standing on the mountaintop of the future,
I see children running and playing everywhere,
Let them play all they want
For it will help them become
The great men and women
They were meant to be.
So, never break a child’s heart,
Never tell them they cannot succeed.
Please encourage all their creativity......
Yes, I’m standing on the mountaintop of the future,
Breathing clean, fresh air, and all around me is
A bustling, golden, new Paradise city.
The water is pure again,
The fresh air sparkles,
And the land is once again healthy.
(C) 2007 Tamar Raine
Animal photos link
If you enjoy photos of animals, here are some from Yahoo that are interesting. The one link is to a Mother sloth and her baby. I don't know why, but almost any photos of babies makes me get all warm and fuzzy! Enjoy!
http://news.yahoo.com/nphotos/Zoo/ss/events/lf/031802zooanimals/im:/100305/481/d165880a9b3c42df9dbed73db5308a11#photoViewer=/100305/481/bd7e12b89a7247e5a9afe20a293e0adb
http://news.yahoo.com/nphotos/Zoo/ss/events/lf/031802zooanimals/im:/100305/481/d165880a9b3c42df9dbed73db5308a11#photoViewer=/100305/481/bd7e12b89a7247e5a9afe20a293e0adb
Wednesday, March 3, 2010
Please Help Haitians with disabilities
http://www.portlight.org/home.html
There are many thousands of Haitians with disabilities who need our help. Please give what you can.
There are many thousands of Haitians with disabilities who need our help. Please give what you can.
Life isn't a Fairy Tale (Article on Mentoring)
Wake up, my princess, there is no fairy godmother to turn your wishes into reality. Life is not easy and does not always seem fair, but everybody must deal with the cards they were dealt. There comes a time in all our lives when we must say, “Okay, that happened, now am I going to let it control my life, or am I going to take this issue by the horns and beat it?”
In my life I have mentored many people with cerebral palsy, which also happens to be one of my disabilities. Most recently, I mentored a young woman with cerebral palsy. No doubt Linda's family life could have been better. But it is what it is, and I try to get her to see through to the reality of her situation. We could discuss the WHY’s of her life, and discuss HOW people SHOULD treat each other until the sun freezes over, but it would not solve any of her problems. And, certainly, you cannot force anybody to love you. I am a bit like pop psychologist Phil McGraw, in that I like to cut to the chase, rather than sit on the proverbial psychiatrist’s couch and talk for years about what our family did to mess us up.
Now, let me paint a picture; Imagine being very, very intelligent, imagine being forced to go to a day program where many of the people have educational challenges. Imagine your mind does not get properly nourished. Imagine that the reason you are in the day program is solely because you need help going to the bathroom, and your support agency does not want to go to the trouble of hiring somebody so you can attend college… These are all some of the real issues that Linda was dealing with.
I began by telling her I know many people who have found innovative ways around these issues. I also tell her she absolutely has the right to request additional hours. I tell her if her support agency does not help her, she must go to the next level, to the Regional Center case manager. It took a few months, of repeating, over the phone or in Instant Messaging, over and over again, what steps she needed to take. Sometimes my assistant and I felt like a broken record, but she finally succeeded in getting more hours, and she made the decision to stop going to the day program, so she could attend the local college.
Another issue is where she lives. Currently she lives in a house that sits on a road with no sidewalks. She is completely dependent on either taking her own van, which her attendants drive, or taking paratransit, which is unreliable. Otherwise she is just stuck in that house, like a prisoner. There is no just going for a walk, because it would just be too dangerous to ride her chair on the busy road.
There were other things that were going on. I have tried to show Linda that the situation will be awful if she does not move NOW. She knows it will be bad, and she knows if she stays there, without making her dreams real, she will die. Her spirit will die, and she will be very bitter, yet she feels responsible for her grandfather. The difficulty is that all section 8 lists in the area have been closed for years, and her support agency apparently didn’t know about EDEN housing, or below market rate housing, or any of that.
Due to my contacts from sitting on the disability commission for six years, I have been able to dig up resources for her. But, it is up to her to follow through on those resources, it’s not like I have a van and can take her to these agencies for assessments.
Another area we always come back to is how unhappy she was with her support agency. Unfortunately, the agency that supports me has a waiting list 30 people long, because it is the best one in the state. But I happen to know a young man who started his own agency because of his own staffing needs. I have told her about his agency many, many times, and keep telling her to call the guy. For some reason, she hesitates, even though her attendants do not understand why she is so unhappy, and why she wants to go out and meet people and have a social life! They have refused to take her to clubs even though she is 26 years old. So, for many months she has sent me instant messages me about how this one did this, and that one does that. I firmly kept telling her, “Linda, your agency is the cause of most of your aggravation, and your tears, you have every right to fire them, and hire a new agency. You even have a right to change Regional case managers." I don’t know what’s holding her back, I suspect, though, it is fear of the unknown.
I tried to build her self esteem by teaching her some of the principles of rational self-interest. I let her know that it is sad that her sister, whom she practically raised, does not want to spend time with her. I acknowledged that she has a right to feel hurt, but then I said, okay – it looks like you just need to let go, and get out there and make friends with people who do want to be with you.
I told her it is okay to put your needs and desires first; you have every right to take care of yourself. Of course it isn’t right that those of us with disabilities have to fight so hard for what seems so basic a right; the right to pursue our dreams. But after acknowledging that life is hard, and reminding her that nobody promised us a garden of roses, I always push her to continue setting goals for herself. One step at a time, one day at a time, one week at a time, goal setting and strategy continue to be key.
I began by telling her she needs to speak up, and make her wishes known. With each obstacle she encountered, I told her to keep going. I tell her she must continue to speak up, and be forceful in obtaining her dreams. I listen with compassion, but sometimes firm, tough love is needed. She has a tendency to get stuck like a broken record, and ask; “BUT, WHY?” this or that happens. It is at these points I tried to push her beyond the WHY, toward the steps she needs to take to obtain services, or whatever she wants to attain.
I got frustrated with her at times, because she complains about things, but then does not follow up on suggestions I give her. I was talking about it with my assistant, and I said, "You know, I can only do so much, it's not like a fairy tale, I can't just wave a wand and make her problems go away. I'm not her fairy godmother; she has to do some of the work.
We must all do as much as we can do. Maybe what we need to do is become our own superheroes, our own fairy godmother. Just like Glinda told Dorothy in the Wizard of Oz, she always had the power within her all along, to go back home. Back in the 70's there was a song called Tin Man, and ever so often I hear a stanza in my head;
In my life I have mentored many people with cerebral palsy, which also happens to be one of my disabilities. Most recently, I mentored a young woman with cerebral palsy. No doubt Linda's family life could have been better. But it is what it is, and I try to get her to see through to the reality of her situation. We could discuss the WHY’s of her life, and discuss HOW people SHOULD treat each other until the sun freezes over, but it would not solve any of her problems. And, certainly, you cannot force anybody to love you. I am a bit like pop psychologist Phil McGraw, in that I like to cut to the chase, rather than sit on the proverbial psychiatrist’s couch and talk for years about what our family did to mess us up.
Now, let me paint a picture; Imagine being very, very intelligent, imagine being forced to go to a day program where many of the people have educational challenges. Imagine your mind does not get properly nourished. Imagine that the reason you are in the day program is solely because you need help going to the bathroom, and your support agency does not want to go to the trouble of hiring somebody so you can attend college… These are all some of the real issues that Linda was dealing with.
I began by telling her I know many people who have found innovative ways around these issues. I also tell her she absolutely has the right to request additional hours. I tell her if her support agency does not help her, she must go to the next level, to the Regional Center case manager. It took a few months, of repeating, over the phone or in Instant Messaging, over and over again, what steps she needed to take. Sometimes my assistant and I felt like a broken record, but she finally succeeded in getting more hours, and she made the decision to stop going to the day program, so she could attend the local college.
Another issue is where she lives. Currently she lives in a house that sits on a road with no sidewalks. She is completely dependent on either taking her own van, which her attendants drive, or taking paratransit, which is unreliable. Otherwise she is just stuck in that house, like a prisoner. There is no just going for a walk, because it would just be too dangerous to ride her chair on the busy road.
There were other things that were going on. I have tried to show Linda that the situation will be awful if she does not move NOW. She knows it will be bad, and she knows if she stays there, without making her dreams real, she will die. Her spirit will die, and she will be very bitter, yet she feels responsible for her grandfather. The difficulty is that all section 8 lists in the area have been closed for years, and her support agency apparently didn’t know about EDEN housing, or below market rate housing, or any of that.
Due to my contacts from sitting on the disability commission for six years, I have been able to dig up resources for her. But, it is up to her to follow through on those resources, it’s not like I have a van and can take her to these agencies for assessments.
Another area we always come back to is how unhappy she was with her support agency. Unfortunately, the agency that supports me has a waiting list 30 people long, because it is the best one in the state. But I happen to know a young man who started his own agency because of his own staffing needs. I have told her about his agency many, many times, and keep telling her to call the guy. For some reason, she hesitates, even though her attendants do not understand why she is so unhappy, and why she wants to go out and meet people and have a social life! They have refused to take her to clubs even though she is 26 years old. So, for many months she has sent me instant messages me about how this one did this, and that one does that. I firmly kept telling her, “Linda, your agency is the cause of most of your aggravation, and your tears, you have every right to fire them, and hire a new agency. You even have a right to change Regional case managers." I don’t know what’s holding her back, I suspect, though, it is fear of the unknown.
I tried to build her self esteem by teaching her some of the principles of rational self-interest. I let her know that it is sad that her sister, whom she practically raised, does not want to spend time with her. I acknowledged that she has a right to feel hurt, but then I said, okay – it looks like you just need to let go, and get out there and make friends with people who do want to be with you.
I told her it is okay to put your needs and desires first; you have every right to take care of yourself. Of course it isn’t right that those of us with disabilities have to fight so hard for what seems so basic a right; the right to pursue our dreams. But after acknowledging that life is hard, and reminding her that nobody promised us a garden of roses, I always push her to continue setting goals for herself. One step at a time, one day at a time, one week at a time, goal setting and strategy continue to be key.
I began by telling her she needs to speak up, and make her wishes known. With each obstacle she encountered, I told her to keep going. I tell her she must continue to speak up, and be forceful in obtaining her dreams. I listen with compassion, but sometimes firm, tough love is needed. She has a tendency to get stuck like a broken record, and ask; “BUT, WHY?” this or that happens. It is at these points I tried to push her beyond the WHY, toward the steps she needs to take to obtain services, or whatever she wants to attain.
I got frustrated with her at times, because she complains about things, but then does not follow up on suggestions I give her. I was talking about it with my assistant, and I said, "You know, I can only do so much, it's not like a fairy tale, I can't just wave a wand and make her problems go away. I'm not her fairy godmother; she has to do some of the work.
We must all do as much as we can do. Maybe what we need to do is become our own superheroes, our own fairy godmother. Just like Glinda told Dorothy in the Wizard of Oz, she always had the power within her all along, to go back home. Back in the 70's there was a song called Tin Man, and ever so often I hear a stanza in my head;
“Oz never gave nothing to the Tin Man,
That he didn't, didn't already have....”
It means the Tin Man always had a heart, the Scarecrow always had a brain, the Lion always had courage, Dorothy always had the power to go home, and when they were tested on their journey those things became apparent. The Wizard of Oz is a great, classic example of seekers who go on an adventure, and on the way, discover many things about themselves.
I have always been honest and forthright. I have always been willing to work hard at whatever I set my mind to. I thank my lucky stars every day that I learned to be my own self-advocate from my parents. They went to bat for me, many times. Having cerebral palsy has been hard at times because people always underestimate you. They see the uneven walking gait, they hear the garbled speech, and they make dozens of assumptions, based on what things look like on the outside. Every day I beat down the door and I follow my own path. Those of us with disabilities always have to work ten times as hard just to live an ordinary life.
All I wanted when I was younger was a job. Few were willing to even interview me. That's tough, life isn't fair. I had to deal with the cards I was dealt at birth. I kept trying different things, I didn't give up. I now have my own business. I have told my young friend some of what I’ve had to go through to get what I want and need, so that she can see that persistence does pay off.
My passions are writing, art, and disability issues. I am trying. I am currently in the process of writing a business plan. I never dared call myself an artist before, I now believe I am an artist. I never thought of myself as a businesswoman, either, but now I consider myself a businesswoman. It is not easy. As a business owner, you are responsible for everything. You are responsible for knowing all the nitty-gritty details of the products, marketing, and advertising. It's up to you to run the tests and the numbers. It's up to you to network, to get exposure, all of it. I still can't multiply, but I can look at the stats for my websites and see whether people responded to my ads or not, what search terms they used and so forth. I enjoy the challenges now.
More than ever before, I see that I must be the self-leader. Just like the many young women I have mentored over the last twenty years, I sometimes have to push myself to be more assertive to get what I want in my life. Sometimes you just wish people would do what they’ve promised. You wish you didn’t always have to be the ground-breaker. You wish people would understand what you go through. Sometimes you get weary, and you do want an easier life, and at times wish you had a magic lantern or a fairy godmother to wave her wand and make everything go your way. But of course, as the saying goes, easy come, easy go.
And that is the problem with these fairy tales, with movies, and TV shows; they feed you the idea of no effort - easy money, and set people up to be bystanders in their own lives, and not know it takes a lot of work, a lot of effort to be successful in this world. For some of us, the journey is longer and harder due to physical disabilities, societal prejudices, and accessibility issues, but when we do end up achieving our dreams, and living the life we are meant to live, our successes are that much greater and sweeter.
The thing I tell myself, as I guide Linda to becoming her own best advocate, is no matter what issues come up, the focus is always to be on taking the next step. Isn’t that interesting? The particulars for each individual’s struggle to become the person they are meant to be, may differ greatly, but as long as we all keep taking one more step, and then another and another, until we reach our destination, like the old-fashioned foot traveler. We may decide at any moment to alter our goals, to try something else, to go in a different direction, but as long as we keep moving, eventually we will meet with success. So, when Linda earned an A in her English class, she was so proud of herself, proud because she did it all herself. We just have to keep building on that success. I have no doubt that whatever field she decides to go into, she will be very successful.
My mother really drummed it into my head that life is not fair, but with hard work we can succeed. I appreciate all my mentors for teaching us that the easy way is not the most rewarding, that hard work is good, that finding what we love to do – our passions, will turn hard work into our greatest joy, and thus when we have that downstream focus, work becomes play.
(C) Tamar Raine
Tuesday, March 2, 2010
Poem for my dad
To My Blessed Dad
As you soar into the sky,
As you float in heavenly peace,
As you sail the seven seas
On a trade wind’s breeze,
Now you are free.
I reach out among the stars,
But you are not so far away,
Blessed, blessed, blessed man,
You will always be in my heart.
Oh tender romantic man,
Gentle father, loving husband,
You will always be in our hearts,
I reach across the sky,
I look up at the moon and the stars,
How can I say goodbye?
If I could swim the seven seas,
If I could fly into the golden stars,
I would bring you back with me,
But now you are free.
Blessed, blessed, blessed man,
I’ll reach out with my heart,
For you are not so far away,
We’ll find a way one day…
(c) Tamar Raine
For you are not so far away,
We’ll find a way one day…
(c) Tamar Raine
A Lady (poem)
A Lady....
She is a lady fine and true
Her spirit strong and lively,
She has a tremendous heart
And the will to share
With another who is fine and true.
Today as she rode in the afternoon heat,
She knew that she just cannot be beat,
The hot spring air ran through her curls,
As she in her chair, and an aide on a bike did race,
To see her fathers newest embrace.
Her father, a retired psychologist,
said he was quite amazed,
at the romance scammer’s marketing skills,
He’d failed to create his own dating service,
Unable to pay his programming bills.
She thought to herself, dad it’s okay
Most men, I find are really so bland.
Dashing home, she thought of that one,
special man, who had caught her eye,
While talking about mud pies.
She is a lady fine and true
But right now her heart is somewhat blue,
But, don’t worry, this lady
with her strong spirit and giving heart
refuses to give in to the anti-civilization farts!
(c) Tamar Raine
She is a lady fine and true
Her spirit strong and lively,
She has a tremendous heart
And the will to share
With another who is fine and true.
Today as she rode in the afternoon heat,
She knew that she just cannot be beat,
The hot spring air ran through her curls,
As she in her chair, and an aide on a bike did race,
To see her fathers newest embrace.
Her father, a retired psychologist,
said he was quite amazed,
at the romance scammer’s marketing skills,
He’d failed to create his own dating service,
Unable to pay his programming bills.
She thought to herself, dad it’s okay
Most men, I find are really so bland.
Dashing home, she thought of that one,
special man, who had caught her eye,
While talking about mud pies.
She is a lady fine and true
But right now her heart is somewhat blue,
But, don’t worry, this lady
with her strong spirit and giving heart
refuses to give in to the anti-civilization farts!
(c) Tamar Raine
Odds & ends
It's amazing how much the gray days affect me. ugh! But at breakfast this morning, I noted one little red bud on my one hanging plant, and! The trees that only lost its last leaf three weks ago, already has some green sprouting on the branches. So! Spring is on her way! I know we need the rain badly, and I hope that what we've received will help us.
Well, on to perfect the look of this blog!
Mag
Well, on to perfect the look of this blog!
Mag
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