...Previous Entries

Suzanne Neime
Washington, D.C.
Kathy Newroe

Kathleen Newroe, poet and disability-columnist in the Santa Fe New Mexican, died last night (2/2/00). Kathy had late-onset multiple sclerosis and passed away peacefully at home. The following biographic information is excerpted from The Santa Fe New Mexican, January 14, 2000. [Eric Dibner]

An Independent Woman: Kathleen Newroe
by Rosemary Zibart

Diagnosed in 1991 at the age of 45,...Newroe's [multiple sclerosis] progressed rapidly.... "It seemed like every day I had to adjust to a new limitation " Yet despite each new impediment, Newroe has continued to work. Her column, "Access to Answers for New Mexicans with Disabilities," has been featured every other Sunday in The New Mexican for six years....Newroe wrote 164 columns, many of them after she had lost the use of her hands and had to depend on technology that enabled her to select letters on the computer screen via a puff of breath through a straw in her mouth. Her poems have appeared in a number of poetry anthologies and dozens of articles have been published in newspapers, magazines and trade journals.

Her second marriage introduced her to disability awareness because her husband [was disabled]. "Back in the '80's," Newroe said, "there was nothing. No handicapped parking spaces or ramps or anything." ...[After contracting MS,] "I began to see the value of tele-commuting." Being able to stay at home and, most important, stay linked to her computer, was crucial. "As my body went through these terrible levels of not being able to raise my hand to my mouth or get out of bed or take a bath, having the technology and round-the-clock support of caregivers was a blessing."

Having experienced 30-40 different caregivers, Newroe can recognize the gifts of dependency. "People with disabilities need to know that it's OK to depend on others," she says. "They need to know they can trust other people, however, they always need to remain true to themselves."

"I can't emphasize enough how important work is to people with disabilities in order that they continue to feel like they're part of the human race. And work can include volunteering. My work has provided validation when nothing else did."

She also believes that being so severely disabled "gives you a chance to see what is really important as all the petty jealousies or judgments and angers drop away. The body falls away and the mind is cleared of extraneous material. (Disabled persons) know what ultimately counts and is important and what is important is love and acceptance."

In her final column in The New Mexican, Newroe wrote... "Being disabled is a life path that none of us would have chosen. Life often is not fair. The struggles our bodies and psyches, and those of our loved ones, demand of us can be mean, humiliating and painful. As a gift to yourself, let the tears and sadness be felt. Accident, age and illness happen to us in bodies that can't make us physically able or young again or well. We can pray for miracles, and I'm not saying that miracles can't happen, but the more likely reality is that we live what life gives us. And what life gives us can be tragic, but also gives us heart and soul and spirit."

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Mark O'Brien

With deep sadness, I share with you the passing of Mark O'Brien. He died July 3, 1999 in his home in Berkeley, CA. The world has lost a great man, an extraordinary artist. We have lost one of our most eloquent voices, a man of ferocious intelligence, wit and honesty. Rest in peace, dear friend. May your journey be wondrous. Today I simply want to honor my friend by reading my favorite Mark O'Brien poem aloud. I hope you will do the same. [Cheryl Marie Wade]

Let me touch you with my words, For my hands lie limp as empty gloves. Let my words stroke your hair, Slide down your back and tickle your belly. For my hands, light and free-flying as bricks, Ignore my wishes and stubbornly refuse To carry out my quietest desires. Let my words enter your brisk, subtle mind Bearing torches, shouting huzzahs, Admit them willingly into your being So that they may caress you gently within.
-- Mark O'Brien, July 1987

Love Poem for No One in Particular

published in The Man in The Iron Lung, copyright 1997
Lemonade Factory
1678 Shattuck Ave., Ste 267
Berkeley, CA 94709

Apparently, Mark O' Brien died of broncitis. This bothers me a great deal, since breathing was a major issue in Mark's life. For those of you who saw the Academy Award winning documentary about Mark, Breathing Lessons, you saw what a wonderful, funny, intelligent man Mark was. His openness in that film, the narration of which is exclusively Mark, is powerful art, whether talking about the terrors of the nursing home, to sex, to his fear of leaving the womb of his iron lung. [Wesley Smith]

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Elnora Payne
Albany, CA. I remember Elnora as one of the enthusiastic clients of our Peer Transit Training Program in Alameda County around 1990. She was featured in the Metropolitan Transportation Commission's monthly newsletter, Transactions, with a big picture of her mounting the lift of an AC Transit bus in her scooter. She and I took trips to San Francisco on BART as well as bus rides around the East Bay, and she always wanted to become one of the Peer Trainers. If it didn't happen, it was largely because that program folded after a year or two, to the great detriment of persons with disabilities in the Bay Area who depended upon it to develop travel skills on public transportation. [Jean Nandi]
Carmen Paz

Carmen was born in 1936 in New York City. In the early sixties she was a social figure in the folk/rock music scene in NYC and Chicago. She dated Albert Grossman (Bob Dylan's manager) and John Brent (poet/actor orginal member of The Second City).

In 1965 she moved to Santa Fe, NM, where she owned and operated a store that specialized in imported Mexican ceramics, iron and glass works, textiles and other art. She, along with her second husband, Melvin D Anderson were central figures it the local art and social scenes.

In 1971 Carmen and Mel's van went off a bridge in Zacatecas, Mexico. Mel was killed instantly; Carmen was paralyzed (T-7 quadriplegic). Unsympathetically the IRS took her home in Santa Fe for Mel's unpaid taxes after his death. There you have the "death and taxes" certainty.

Carmen had three young sons living with her at the time, Jeremy Paz (Age 7, son of John Brent), Justin Anderson (Age 3) and Demian Anderson (Age 2). Her first son, Rafael Torres, who was raised by her mother in NYC and Puerto Rico, came to live with Carmen and family in in 1977.

After the accident Carmen tried to live and raise her family in Santa Fe, but the existing medical facilities and staff were not well enough prepared for a quad who chose to remain active after her injuries. In 1974 she moved to San Francisco, but eventually settled in Berkeley. She bacame an active member of CIL and and activist peaking out for disabled rghts. She also opened a successful retail shop called Paz for Bed & Bath, which she eventually had to give up due to her failing health.

After years of futile struggles with the government health-care and financial systems, she finally succumbed to infections related to a bedsore. She died in her sleep in Santa Fe, NM in 1982.

Sally Ann Pell

A very dear dear lady has passed from us [Saturday, August 5, 2000]. We will miss her sunny outlook on life, her quick wit and her enthusiasm. Sally Pell was a staunch supporter of the ADA, IDEA... and worked tirelessly for civil rights... and access within the Democratic Party.

To all those lucky enough to have known her, Sally was an amazing person who will be remembered most for her incredible strength, perseverance, humor and kindness. Despite a long term struggle with juvenile diabetes, she managed to surpass any/all disabilities that came across her path with resolve, wit and positive outlook. She possessed a sense of great curiosity and interest in the life and people around her. She was fascinated by current events, popular culture, and politics. Twice elected to office, she was a tireless and enthusiastic worker for the East Contra Costa democratic party and the Democratic Central Committee.

Although, not originally from California, Sally adopted California as her own and felt like a true native. Having lived all over the world, she would often say "there is no better place on earth than here". Sally was born on February 9, 1934 in Shanghai, China to parents in the British Customs Service. She lived in China during World War II and was interned there during the Japanese occupation. After the war she moved to Australia with her family but eventually went to Britain to finish her schooling. She later married and moved to Singapore and Hong Kong. Sally came to the United States in 1962 and settled in Marin County in 1962 with her first husband and 3 children.

While in Marin she make many deep friendships and was involved in local community groups such as the Sunny Hills. She also worked as a legal secretary for 10 years in San Rafael before retiring. In 1973 Sally and her husband, George Pell Jr, moved to Antioch where she was a resident for the last 27 years. She was a lovely lady who will be missed dearly by those who knew and loved her. [Maggie Dee and Jerome E. Podell]

Arthur Pepine

Arthur Pepine, 62, a long-time human rights and disability rights activist, died at his Hamden, Conn. home on Oct. 7, 1999. On receiving the Connecticut State Commission on Human Rights and Opportunities Roger Sherman Award in recognition of a Lifetime of Achievement in the furtherance of human rights, Mr. Pepine wrote: "No one does this alone -- I am deeply indebted to my brothers and sisters in the disability rights movement. Outstanding and dedicated advocates in our state and country have been my inspiration." He went on to say, "I realize I am living the old Talmudic precept first taught to me by my mother, Rose Canestro, and practiced by so many who have made this world a better place: 'If not I -- who? If not now -- when?'"

Mr. Pepine served for many years as Financial Aid Officer and Assistant to the Dean at the Yale School of Drama. Born in Brooklyn, he graduated from the New York High School of Performing Arts and Brandeis University, where he received his B.A. in Theater Arts in 1958. An ardent supporter of theater and the arts, he served as faculty advisor to the Yale Cabaret, rarely missing student performances. His commitment to the New Haven community led him to membership on the New Haven Register's Minorities Affairs Board and the Greater New Haven Transit District. Mr. Pepine was often called upon for his organizational skills. He served as chair and Founding Member of the Board of the Center for Independence and Access in New Haven, and was a founding member and chair of Citizen's Television. He also was chairman of the Board of the State of Connecticut Office of Protection and Advocacy for Persons with Disabilities, and served on numerous boards and commissions.

Arthur was a man of enormous energy, a staunch advocate known for his tireless commitment to human rights and the furtherance of causes critical to people with disabilities. His many friends and admirers recognize that his life was an affirmation of human rights, and his efforts testimony to man's capacity to improve the human condition. [Mark Smith]

Christopher Price
Washington, D.C.

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Francis Rainbow
Bethesda, MD
Dora B. Remson

My mother, Dora B. Remson, died on Jan. 3, 2000. Although this leaves a very big hole in my life, and in the lives of all who knew her, I am very grateful for the time we had together. I have added a new page to my web site to honor her memory and and celebrate her life. Whatever honors I may or may not achieve during my lifetime, none will surpass being Dora Remson's daughter. I invite you to link to the site on my home page, http://webspace.webring.com/people/rl/lrmidi/Mom.htm [Laura Remson Mitchell]

Bearl Reuter
Bearl was was the first student with a disability in the Anne Arundel County (MD) schools and her father built the ramps for the school! She was later married and was the mother of two children. In 1979 living in Baltimore MD, she initiated a lawsuit against the local transit authority for canceling the lifts on an order of buses, organizing Baltimoreans Against disAbility Discrimination (B.A.d.D.) to help fight the access issue. When lift buses frequently were not dispatched, she rolled in front of the offending bus and alone started the bus blockade of Baltimore buses. Very reluctant to travel, Bearl never attended a demonstration or action on the National level, but she was well known around Baltimore and was an articulate and knowledgeable spokesperson frequently sought out by newspapers and tv stations for the disabled slant on news. B.A.d.D. was one of the earliest "chapters" of ADAPT, and even today they are the only chapter of ADAPT that retains their own identity. Bearl and her group successfully "sued" and won over 100 discrimination complaints, including most recently the access to the historic ship USF Constellation. [Bob, Access Systems]
Mike Richards
Dallas, TX
Barbara Ripley
Barbara Ripley, DREES Supporter past away Saturday, September 25, 1999. Barbara was the thin white haired lady almost always behind or beside her husband Howard's wheelchair. She was the archetype of a significant other advocate in the Disability Rights Movement. She was a person of rare quality who made life a classy experience. Many places in California are accessible because of Barbara. Sections of the Building Code should have her name on it. Her facilitation and support of our organization will always be remembered. [Patrick Connally]
Howard Ripley  
Howard Ripley was the co-Chair of DREES's Access Advisory Committee, a contributor, and advocate. Howard was a man who rolled softly and carried a big stick. We would not have the level of access we have today if it wasn't for his courage, hard work, and determination. He did not always take the headlines, but he was always there for his community. We will miss you Howard. [Patrick Connally]
Ed Roberts
Ed Roberts was President of the World Institute on Disability, which he founded in 1983 with Judy Heumann and Joan Leon, when he died suddenly in March 1995. He had a distinguished career in the disability field and received many awards not the least of which was a MacArthur Fellow awarded by the John D. and Catherine T. MacArthur Foundation. At the time of the 504 demonstration Ed was the State Director of Rehabilitation where he was focusing his energy on transforming the vocational rehabilitation system from one that was dominated by care givers to one where the client-the person with a disability-was a major force in policy and program. He was an anomaly in the federal-state rehabilitation system-the first state director to be disabled, he used his position to make some spectacular accomplishments. One was his totally innovative use of federal grants to start independent living centers in California, which led eventually to the inclusion of independent living services and independent living centers in the Rehabilitation Act. Ed was totally in sync with the group of disabled people who were occupying the Federal Building during the 504 demonstration, although his governmental position did not permit him to join them. But, even though he couldn't be inside in person, he found many ways to participate and contribute, including convincing Governor Jerry Brown that a film of the demonstration would be an effective public education tool. He also reached out to other officials and gained their support, including that of George Miller, who was then (and still is) a representative to the House of Representatives from Contra Costa County. Miller organized the Congressional hearing that was held in the Federal Building and involved Phillip Burton and other elected officials to participate. [Ken Stein]
Frank Robinson

Being the "only one" with a disability can be a lonely and 'one of a kind' experience. Many people with Moebius syndrome (a rare, congenital facial paralysis) were adults before they even knew their condition had a name and that others had the same condition. When Frank and I first met, we were able to share with each other within minutes the thoughts and fears that our very own families would probably never suspect, and in July, 1996 Frank was one of almost thirty adults with Moebius who gathered at our second international conference. He was an articulate and natural leader, and soon became known and loved by many for his absolutely incomparable humor and his ability to clearly express emotional issues related to having such an easily misunderstood disability.

Disabilities are seldom as 'simple' as they appear, and the depression and ill effects from years of being teased or misunderstood by others had already done considerable damage to Frank's self-esteem. On a particularly low afternoon in June 1999, Frank took his own life. But I don't want his memory obscured by this final time of overwhelming despair. Frank was deeply sensitive to others, exceptionally creative, highly intelligent .... and quite possibly very hurt by the ignorances and prejudices of people who choose to demean others who may look 'different'. His death is a very solemn and straightforward reminder that life is indeed very fragile, and for the need to handle one another with genuine and loving care. Look beyond what you may perceive as deformities or disfigurements ... for one's heart and soul is the true measure of an individual. [Sandy Goodwick]

Corey L. Burton Rowley

July 21, 1968-October 13, 2008

Corey Rowley, a national leader in the disability rights movement lost her long battle with cancer much too soon on October 13, 2008, at age 40, surrounded by her family in Salt Lake City, UT.

Rowley was a highly successful progressive voice for change and her leadership had a significant impact on the lives and rights of 54 million Americans with disabilities.

Ms. Rowley served as the executive director of the Utah Statewide Independent Living Council and then the Pennsylvania Statewide Independent Living Council. She also served on the Board of Directors of the American Association of People with Disabilities and as Vice President and Chair of the Legislative and Advocacy Committee for the National Council on Independent Living. She received the 2006 Justice for All award and the 2007 Frank Harkin Memorial Award for her leadership.

She grew up in Utah. After successfully surviving leukemia during her pregnancy with her second daughter in 1991, she took her personal experience with disability discrimination and her vast knowledge about public policy, and led many national initiatives to increase employment, improve access to healthcare, assistive technology, voting, independent living services and supports and to increase the implementation and enforcement of civil rights protections for people with disabilities. She was especially known for her work to increase the legislative impact of grassroots organizers, youth leadership development and for initiatives that led to the inclusion of the history of disability rights in public school curriculum.

In addition to her expertise in organizing, advocacy and public policy systems change, she loved history, politics and she was the life of any gathering she attended.

Ms. Rowley is survived by her mother, Gwen Burton, her daughters Amber and Alex, her granddaughter Bella, nine brothers and sisters, many nieces and nephews and a wide circle of friends in every state across the US. She was predeceased by her father. She will be deeply missed but the impact of her efforts to improve the lives of people with disabilities leaves a lasting legacy.

In 2002, after the death of Justin Dart, the father of the disability rights movement, Ms. Rowley wrote the following poem. Those who love her pray that she too will keep us in sight.

To a Revolutionary War Hero

Soldiers, Warriors, Patriots,
Freedom Fighters and more
You spoke of Revolution
From you I learned of a different war

The wars in my life
The ones that come to mind
World War II, Viet Nam, the others
Are all of a similar kind

They are measured by lives lost
By heroes who led the fight
That carried the torch
With dignity and might

They blazed a trail
To battlegrounds drenched in blood
Places holy and sacred
The price rarely understood

From the greatest orators and leaders
I learned what freedom means
“Four score and seven years ago”
“I have a dream”

Then I listened to you
Sounding a battle cry
We weren’t at war
I wondered why

The more I listened
You described the war
“Take it to the streets,
Walk the nursing home floors”

You said our brothers and sisters
Are locked away
Laws are being made
And they have no say

So I answered your call
I hit the streets
I’m haunted by what I saw
The people I would meet

When I walked the halls
And listened to the sounds
I finally got it
This is the battleground

Every bit as sacred
Even more lives lost
Should freedom and dignity
Come at such a cost

So now when I speak of war
To my children, family and friends
I speak of a fight
Without a beginning or an end

No specific date
To celebrate as Independence Day
No one document to hang on the wall
To prove we found the way

When history looks back
To tally our scorev They won’t look at one battle
It will have to be more

Did we follow your path
Did we fight to the end
Not just change the laws
But did we make amends

Did we go back to those halls
Listen to the sounds
Understand that this
Is our hallowed ground

This is a Revolutionary War
Unlike no other
We must not retreat
We cannot take cover

You waged the war
You taught us to fight
We’ll take over now
But we pray, please keep us in sight

Justin, because of you I will vote, march and seek office.
I love you.

An original poem by Corey L. Rowley

[Marcie Roth]
Kevin Rowley
Chicago, IL
Phyllis Rubenfeld

Last night, we learned that Phyllis Rubenfeld died Thursday afternoon [June 29, 2000] of pancreatic cancer. She had just entered the hospice unit of a New York area hospital. Phyllis worked passionately among both academics and activists. She served on the Board of the Society for Disability Studies, which is holding its annual meeting in Chicago this weekend. She was a dedicated activist for Not Dead Yet, and worked successfully with others to build support within SDS for Not Dead Yet. She was one of the "Princeton 14," arrested last September (her first arrest) in demonstrations against Peter Singer's appointment at Princeton University. This year's theme at SDS is "Activism and the Academy." Phyllis lived that theme. She will be missed. [Diane Coleman]

I first met Phyllis when she picked up the reins of ACCD - American Coalition of Citizens with Disabilities, after Frank Bowe's leadership during the historic 504 demonstrations. She gave a stunning "Entertainment Tonight" interview in the early 80's against telethons. She was a kindred spirit and relentless fighter for civil rights and justice for all. Yes, she will be missed, long remembered and honored. [Tari Susan Hartman]

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Gregory Sanders
Greg Sanders, who died in June 1996 at the age of 46, helped with pre-planning for the 504 Sit-in. He spent part of the first week in the HEW offices and then left to handle press reports and work with the media on the outside for the remainder of the sit-in. An expert on Social Security work regulations, Greg helped hundreds of people with disabilities. As word of mouth spread about Greg's knowledge and ability, people came requesting help with writing PASS plans, maintaining benefits, and advocating for them with state officials. It was not unusual for Greg to negotiate with Social Security or Department of Rehabilitation staff in Sacramento on behalf of an individual. Greg lobbied in Washington and was appointed to state committees over the years. The California State Legislature adjourned for the day in Greg's memory upon learning of his death. In the 1970's Greg lived in the Cowell Residence Program at UC Berkeley where he met Ed Roberts and connected with the Center for Independent Living. Greg was interim director of the Center for Independent Living for six months. An accomplished carpenter, Greg designed and constructed custom-made desks for the original employees at the Center for Independent Living. The desks were hailed as the first -reasonable accommodation+ before the term was identified with the independent living movement. [Ken Stein]
Dick Santos
Richard A "Dick" Santos died on October 16, 1999. Dick was an early staff member/board member of Berkeley's Center for Independent Living and CIL's Disability Law Resource Center. While at CIL, among other things, he was the Dept of Rehabilitation Ombudsman. He was actively involved with local politics including BCA and other community groups, He went to Canada in 1981 where among other things he helped create BOOST (Blind Organiation of Ontario with Self-help Tactics); he was also involved with CIL in Toronto and was on the Board of a variety other disability/community organizations in Canada. He fought his entire life for the rights of disadvantaged people working class people, and people with disabilities. In his later years he had a government job in Canada, working for ensuring employment equity for people with disabilities. When the office was eliminated due to a political changover, he spent the last 3 years of his life working to get the office reinsated. [Jan Santos, Ken Stein]
Don Schmit
Sante Fe, NM
John Short
Colorado Springs, CO
Kathey Sibley

Kathey was a beautiful human being, purposeful in all ways. She was thoughtful, analytic and honest about her views. I speak of her as a compatriot in the battlefield of the disability rights struggle. She had passion for what is just and right and gave her best to each of the fights or projects she chose. Dearest to her heart were In-Home Supportive Services (IHSS) and transportation. She was an IRAPS organizer for her building at the time of her death, helping us with the campaign to give personal care attendants a salary increase.

I met Kathey in the mid-80's when we battled the Governor's budget slashes for essential disability services. In fact, I met her at a rally in downtown LA. She used a motorized wheelchair, she wore her hair long and she had glasses. She was friendly and very focused to the activity at hand. She was one of a few people who dared to use the RTD buses at a time when doing it was being a glutton for punishment. She went to attend her classes at CAL STATE LA on the bus and persevered as one of the first to be a plaintiff in a lawsuit to make public transit more accessible. She gave me the biggest incentive to experiment with the buses for five years until the bus fumes from the streets sent me to the use of a respirator.

Kathey had cerebral palsy and she lived and mastered Culver City, rolling down the street with a prominent orange flag on her chair so that cars and trucks see her coming and going. She lived among peers in a HUD, Section 8 apartment which she kept very neat and clean. She had a place for everything and her place reflected the priorities in her life-- her faith, her family and friends and her work. She had a Bible by her bedside, pretty greeting cards from family and friends on the wall and in her work area, a computer.

Kathey died after being ill for a week--her doctor was out of town and she passed away at the hospital from a heart attack. As I reflect on her life--I gather many, many lessons. Among them I appreciate the way she honored the practical limits of her disability. She worked very hard but she always knew when to stop and nurture herself with rest and reflection. She was gung-ho about the meetings she could attend but she knew how to decline in a graceful manner when it was getting too stressful. But she never left me feeling abandoned in the struggle because she would always promise to write her letters and make her phone calls.

Kathey is back to the loving Presence from whom she came and there, she still gets to do her advocacy, I'm sure, but with a definitive edge over those of us down here who perhaps, are unnecessarily obsessing over the minute details. [Lillibeth Navarro, sent by ADAPT L.A. MAILING LIST, 99-07-10]

Mary Ann Sisneros
Denver, CO
A.J. Smaldone
Berkeley, CA
Jame Small

Jane Small, a disability activist just passed away (October 15, 1999). As you may know, she had been in a coma and never recovered consciousness after a major surgery some weeks ago. Catherine Campisi & Ralph Black wrote that "We all mourn the passing of another strong disability advocate and a staunch supporter of CAPH/CDR. Jane's voice will be missed." Hugh Hallenberg, her husband, said that she always spoke out against injustice and discrimination; and even though she sometimes made people mad, she was usually right!! [Susan Barnhill]

I'm going to miss her very much--she was one of the people who was very persevering in this difficult struggle of ours. She was personally good to me--she gave me feedback on the things she thought I was doing good or the things she was displeased with. She was generous with opportunities when they came up... Jane has opened innumerable doors for us in the disability movement, many of them, we probably are not even aware of. We will have to carry on many of her pioneering efforts. Boy, if only I had one more chance to see her in person--even just to be silly together, absent all concerns for the disability struggle, I would love to have it. But knowing Jane and the thoroughness with which she would do things, even if I had that one more chance to see her alive--I'm sure that we would still talk shop. [Lillibeth Navarro-Persina]

Lili Rachel Smith

By Carla Marinucci


Lili Rachel Smith, whose spirited refusal to accept the bounds of physical disability won her the friendship and admiration of some of the nation’s top political leaders, died Saturday of natural causes, her family said. She was 15. Lili was the daughter of leading Democratic political consultant Averell “Ace” Smith and his wife, veteran Democratic fundraiser Laura Talmus of Kentfield. Smith ran Sen. Hillary Rodham Clinton’s 2008 presidential campaigns in California and other states and the 2006 campaign of State Attorney General Jerry Brown.

“Lili Smith was a beautiful girl,” former President Bill Clinton said in an e-mail to The Chronicle. “She was taken from her family and friends far too soon. As Hillary and I got to know her, we were increasingly amazed at her endless capacity for kindness and generosity.”

Clinton added that Lili “never let her own disability keep her from living her life and touching the lives of others.

She was a wonderful person who will be greatly missed.”

Born with Apert’s syndrome — a congenital disorder characterized by malformations of the skull, hands and feet — Lili required extensive and often painful surgeries at birth and at regular intervals during her life.

Lili died in her sleep at a boarding school in Iowa, her family said.

Despite the considerable physical challenges, Lili — with the strong encouragement of her parents — became an energetic activist in social and political issues and a seasoned campaign insider, working with her father in Texas during the 2008 presidential campaign.

In a family steeped in politics, Lili distinguished herself and won countless admirers by proving “the most natural politician of them all,” said Democratic consultant Dan Newman, a longtime partner with Smith in the San Francisco firm SCN Strategies.

At one point in the 2008 presidential race, she confidently “reassured Hillary Clinton that the candidate was in good hands with her dad running her California operation,” Newman said. “Before long, there were Lili-Hillary bumper stickers” with Lili listed first, “of course,” Newman said.

Dolores Huerta, co-founder of the United Farm Workers, called Lili “a wonderful example of how kids with special needs … can be out there, in front.”

Lili was an energetic activist for causes she believed in — including equality, human rights and global injustices, her friends and family said.

Her bat mitzvah ceremony included a speech lauding “my friend,” San Francisco District Attorney Kamala Harris, for creating a refuge for women, many of them ex-prostitutes and victims of domestic violence.

As a member of the Marin County Youth Leadership Commission, Lili became an advocate for children with special needs in the Marin County School District.

Before attending the Scattergood Friends School in Iowa this year, Lili was homeschooled in Marin County.

Services will be held at Congregation Rodef Sholom, 170 N. San Pedro Road, in San Rafael at 10 a.m. today. Graveside services follow at Mount Tamalpais Cemetery.

The family asks that contributions be made to the Clinton Global Initiative in New York, the Breast Cancer Fund in San Francisco and Scattergood Friends School in West Branch, Iowa.

Mark Smith

Mark Smith died at 6:30pm on Monday, February 25th, 2002 at his home in Jackson, Mississippi. Mark won a long battle with cancer, overcoming pain, prejudice and a failing body to lead the Mississippi Coalition for Citizens with Disabilities until just a handful days before his death.

It was our privilege to work closely with Mark during the several years that he served as Director of the Mississippi Coalition - and we worked with him on a daily basis during the years that he served, not only the Coalition, but also as national Executive Director of Justice For All.

Mark was the strongest man we ever knew. He had iron self control, a man of few words and silent ego. He was a super efficient executive, lightening quick and thunder strong. He was a profound philosopher of democracy, and a moral giant in terms of translating his principles into personal action. He was a man of monumental determination. Whether fighting cancer or injustice, he never gave the enemy an inch. He always gave more than he had to the struggle.

We ask you to join us in celebrating the magnificent life of Mark Smith by rededicating ourselves to total action for the principles he symbolized.

Mark, we thank God for you.

We love you.

Lead us forward. [Justin and Yoshiko Dart]

Sharon Spencer

October 22, 1999. Sharon Spencer, a disabled Berkeley artist died a month after being struck by car in her Elmwood neighborhood. Spencer's disabling nerve disease, ascending transfer myelopthy, didn't get in the way of her art. She was a jewelry designer in Southern California when she lost the use of her legs and then her arms as a result of the disease. She switched to painting, learning to hold a paintbrush between her teeth. She was known for painstaking and detailed miniature watercolors, using a technique much like Tibetan sand paintings.

The news of Spencer's death was a heavy blow to the clients at Creative Growth Art Center in Oakland. Spencer may have had limited mobility, but that didn't hinder her from traveling by bus from Berkeley to the center in Oakland twice a week. The art center's other clients helped set up her easel and paints, keeping a friendly banter going the whole time. It was there, among a close-knit community of artists with both physical, emotional and mental disabilities, that Spencer and the others let their creative juices flow. "The great thing about Sharon is she was so charming and outgoing and kind to everyone in the program," said Director Irene Ward Brydon. "She was a wonderful example of someone who was living with a disability as fruitfully as she could. She embodies what we're trying to express in our program."

The accident has renewed efforts by residents of the Elmwood neighborhood to pressure Caltrans to install traffic control devices on the busy street, which serves as a major commuter route to and from the Caldecott Tunnel. [Jean Nandi, excerpted and edited from an article in the Oakland, CA, Tribune]

Leslie Spivey

I am a Special parent, (Kathy Spivey), a Mom, and furthermore I am an advocate for human rights, most assuredly disAbility Rights. I am the entrusted maternal parent of a very special young lady, Miss Leslie Spivey, who gifted my entire life, with her presence. My precious Les, passed away in January 2000, at the age of 15 years old. Les was Autistic, Speech Impaired, Epileptic, however she died as the result of Sudden Cardiac Death, due to inappropriate medical treatment. She had developed an arrythmic heart after lapsing into a coma, due to a toxic effect of Tegratol. However discovered, it went untreated, resulting in her death.

Les died at home with me. She was watching Barney on TV and the house was filled with her beautiful laughter at the bright antics she viewed. Leslie did not suffer, she passed very quietly and the Angels took her, quickly, so as she would not have to fear her journey. One second she was laughing, the next she was silenced. Les made no attempts to regain life. Her precious, golden heart, simply, stopped. Les' earthly battles and journey ended. She no longer was in need of assistive technology, special education or Mama Bear.

Les' life was utterly remarkable. From day one, we went 'against the grain'. We challenged societies views of children with disAbilities. Les loved life, she loved people. She had the most remarkable personality, she was such a great gift. Les made a difference in the lives of the children of Oklahoma, and elsewhere. Great advances were made in the field of technology and appropriate educational benefits in our immediate area. (Grady County) Last summer Leslie had a difficut time getting out of the Chickasha City Pool. We rallied for appropriate accessibility. This summer, while taking my niece to the pool, there was a legacy from Leslie present. The pool had become accessible!

Life has become greatly bitter-sweet for me. Les was subjected to so much before change was implemented. Simple change, that most will never realize just what it actually required to gain that simple ramp. Les never got the opportunity to use it. I indulge my anger. I deserve to be able to do that. I also indulge my heart, my belief that Leslie was gifted, not only to me, but to a world, struggling against change. I accept that Leslie was sent here to implement changes. She accomplished major goals. I, for one, was granted the ability to recognize great gifts, and, thusly, I took advantage of the precious gifts of Leslie. My life is forever changed. Losing Les to Heaven did not change it, but the simple act of loving Leslie did. No greater love have I ever known.

My life, hereafter, as it was during my brief time with my beloved child, will be to support advocacy for Special Families. Simply, I speak for no-one but myself, any messages or information I post is simply that....information. I endorse no product, company, nor political party. I do major research and if I find a particular interesting topic, I post it. I found that in my personal journey through the maze, information and education was my greatest avenues.Les' particular personal journey may be concluded, however, her legacy will endure, she has gained immortality simply because we remember.

We are, as of yet, merely pioneers still forging a path for justice. Never forget from where we have come to get to where we are today. For every child that must endure, there has been another that had to endure much more. Look to your families as SPECIAL. Your work as SPECIAL. Do not mind being so. Feel the power of a legacy. Accept that specialness and allow it to enfold you and draw upon the legacy of the road less traveled. If you are reading this.......then you are on that very road. You have a gift, or else you wouldn't be here. Use that gift. Believe in it.

My most successful strategy for coping, for gains, was merely the fact that I BELIEVED. I believed in Leslie, she believed in me. Les and I wish for all of you a truly wonderful school year. Make it Happen. Kick Ass. (grin)

In Love and SPECIAL regards, ---Kathy Spivey [Chickasha, Oklahoma]

Dana Stanton
Denver, CO
Dr. Sigrid Phyllis Stearner
Dr. Stearner had cerebral palsy as a child and used a motorized wheelchair. She conducted research at the Argonne National Laboratory on the effects of ionizing radiation on the heart and blood vessels until she retired in 1981. She was a mentor for many young scientists with disabilities. Until near her death, she crusaded to make buildings, sidewalks and other public places more accessible to the disabled. Dr. Stearner was treasurer of the Foundation for Science and the Disabled of the American Association for the Advancement of Science. [Jesse the K]
Olivia Stegman  
Disability activist in Berkeley and Oakland, Olivia was so beloved by her fellow Berkeleyans that a memorial plaque was raised at Cesar Chavez Park in her memory. [J. Nandi]
Alan Stein
A disabled artist from Alameda, CA, Allan died Tueday, August 17, 1999. To the world, and to his many students, Alan was known for his amazing creativity and originality, which were reflected both in his own art and in his ways of teaching art--to children, adults and seniors, with and without disabilities. To his friends, he was known for his unique ability to serve as a catalyst--for communication among disperate individuals, for parties that brought together people from all walks of life, and for just plain fun. He was also the best cook ever to live--a gourmet and a gourmand both! All of us who knew him will always miss him; many who did not know him will continue to know his work. [Karen Rose, Mary Fowler]
Franz Stilfried
Charlottesville, VA
William C. Stokoe, Jr.

Bill Stokoe passed away recently. He had been in ill health for the past several months. The ASL community and the DEAFDIGEST owes Bill a huge amount of gratitude for raising sign language to the level it enjoys nowadays. Entering the Gallaudet faculty in the fifties Bill was fascinated by sign language and on his own and with no encouragement from anyone, embarked into research. He came forward with the conclusion that sign language is a legitimate language. It was considered shocking at that time - but Bill stood fast to his views. Nowadays he is an icon among by serious students of sign language, even though he never really mastered the language in which he raised the bar for all of us! [Barry Strassler, Editor, DeafDigest]

CHEVY CHASE, Md. (AP) - William C. Stokoe Jr., a linguistics professor whose work brought worldwide acceptance to sign language for deaf students, died April 4, 2000. He was 80. Stokoe, who taught at Gallaudet University in Washington, is credited with winning recognition of American Sign Language as a genuine language, overcoming the contentions of linguists that it was little more than a rudimentary imitation of the spoken word. In 1955, when Stokoe (pronounced STOH-key) arrived at Gallaudet, the only university for the hearing-impaired in the United States, he knew little about sign language or even about deafness. He was expected to instruct without using sign language, teaching deaf students by insisting that they communicate orally and read lips. But deaf students signed freely among themselves, and Stokoe became fascinated with the language.

Five years after he arrived at Gallaudet, Stokoe published the groundbreaking "Sign Language Structure." Four years later, he was the co-author of "A Dictionary of American Sign Language on Linguistic Principles." The books helped prove that sign language met the definition of a language. Stokoe's beliefs gradually drew wide acceptance and persuaded schools for the deaf to re-evaluate their approaches. His work won him a hero's status among many deaf students. [Copyright 2000 The Associated Press, courtesy of Scott Mason]

Anna Stonum
Artist, wife of ADAPT activist Mike Ervin, Anna designed the classic ADAPT t-shirt showing the chain of evolution from ape to wheelchair. Until her death, most of her time was spent lobbying for passage of H.R. 2020, The Community Attendant Services Act (MiCASA), which would give disabled people the freedom to choose where they receive services. Anna felt strongly that people with disabilities should not be segregated in institutions and should have the right to live in their communities. [Cheryl Wade]
Rod Stribling
One of our Peer Transit Guides from Eastern Alameda County.
Lori Sturgeon
Chicago, IL
Jean Szymkowiak
Jean Szymkowiak died August 20, 1999. Please add her name to this page. [Dean A. Choate, Executive Director/Advocate, Systems Change Network Of Wisconsin]

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William Tainter
Former Director of the California Department of Rehabilitation. Originally from San Diego, CA, he was appointed by Governor Pete Wilson, and died in office in Sacramento, CA [Jonathan Gold]
"Kat" Taylor
Kat would sit across from me and draw doodles and sketches of people on her mind. While quiet on the outside, her art showed a talent and potential that few were privileged enough to meet. What a beautiful woman she was. [Alana Theriault}
Judy Thompson  

Judy Thompson led the charge for many years at Disability Action, in Adelaide, South Australia. The advocate's advocate, Judy has fought her last battle. She died on May 7th, 1996, leaving us in the best of all possible ways - to a spontaneous chorus of admiration, love, inspiration and grief. Let's remember a strong woman with strength to share. Let's remember an advocate whose greatest delight was a good fight. But let us also remember what Judy never forgot--that the love of others gives it all meaning.

Let's remember especially Judy's sheer delight in the simple act of getting on a bus. A fully accessible bus. A fully accessible bus that was only built because of the work Judy, Maurice, Melissa and Helen did to assert the right to freedom of movement using the Disability Discrimination Act. Judy was one of the lucky ones. The bus case was one of the high points of her life and she lived to see it bear fruit.

Let's tell the stories and make the legend of Judy Thompson. Because there won't be another one like her for a long time to come. Let's be inspired by what Judy did. Let's finish the work she couldn't. Because if there's one thing true of Judy while she was with us it's that there was always more to do. We'll each take time to grieve and say goodbye in our own way and in our own time. And then we'll go on, as Judy always did. [David Morrell, edited by JN]

Dorothy Tolbert
Chicago, IL
Debbie Tracy
Denver, CO
Steven Towle

Longtime disability rights activist Steve Towle died on October 5, 2005 at the age of 53. Born in Tokyo and raised in Maryland, Steve survived a C5-6 spinal cord injury sustained while on active duty in the Air Force in 1974.

He served as the National Spinal Cord Injury Association Vice President for Chapters from 1997–2003, President of the Spinal Cord Injury Network of the Metropolitan Washington Area, NSCIA’s D.C. area Chapter, for over 15 years, and it was he who first introduced NSCIA's former Executive Director, Marcie Roth to NSCIA in the mid–1990s.

Steve was the 2005 Thomas H. “Mick” Countee awardee for extraordinary generosity of spirit, time, and resources in support of NSCIA, and for exemplary dedication, vision, services, and volunteerism to the SCI community at large.

Steve served as a key partner in the NIDRR-funded Rehabilitation Research and Training Center on SCI: Promoting Health and Preventing Complications through Exercise.

He was the Washington Liaison for the National Association on Alcohol, Drugs & Disability, Vice-Chair of the Montgomery County Maryland Commission on People with Disabilities, and an active member of the Spinal Cord Injury Consortium of the Greater Washington D.C. area.

He chaired the Maryland Statewide Independent Living Council for several years and co-founded Capitol Area ADAPT.

For those who knew Steve, his passion for justice, his magnificent, dry sense of humor, and his ability to say just the right thing at just the right time will be missed most of all.

Steve had a huge impact on advancing rights and opportunities for people with disabilities, though few would know that he had played such a significant role. Most people will remember him flying past them in his bright red Bounder power chair, or quietly listening to a discussion on almost any topic before finally delivering a succinct summary and perfect solution.

Steve’s passionate leadership will never be forgotten. [Marcie Roth]

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Don Vigil

Don Vigil, who had been Executive Director of San Bernardino's ILC -- Rolling Start -- for 21 years, passed away November 6, 1999. A native of Denver, Vigil had lived in Mentone six years. He was a member of the Homeowners Association of Redlands, Disabled Coalition, Private Independent Council and Colton Kiwanis. He started the Bloomington Jaycees and ran the Miss Bloomington pageant. He was the youngest member of County Central Democratic Committee. [San Bernardino Sun, Chris Manson]

He was someone who left the world a better place than they found it. [PatrickWm. Connally]

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Kim D. Wallace

Kim Douglas Wallace, 49, of Hallowell, died Tuesday, July 25, 2000, at home on Lincoln Street. His wife, Susan, extended family and friends lovingly assisted him throughout his long battle with cancer. An avid skier, he loved Sugarloaf Mountain, and placed second in the New England Prep School Championships, slalom division, while at Maine Central Institute. He continued to ski for Hall-Dale High School, in addition to being a star football player. He was also active in Boy Scouts and Augusta Abnaki Ski and Outing Club.

Kim's life and career paths were dramatically altered by a spinal-cord injury in July 1979, while living in the Washington D.C. area. His love of history and politics, along with his strong desire to live independently, brought Kim home to Hallowell and an affiliation with Alpha One. They shared a philosophy that Maine citizens with disabilities could and should achieve the American dream. He served on their board of directors, from 1983 to 1986, in a number of roles, including president. In 1986 Alpha One hired Kim as branch manager of the new Augusta office where he helped initiate, design and implement various programs, and was the legislative liason. He passionately advocated "a culture of achievement fueled by an independent living philosophy."

One of the greatest achievements of his career was his participation in crafting the Adaptive Equipment Loan Program that has become the national model. He worked tirelessly to pass the statewide referendum for the initial $5 million in 1988, and helped secure an additional $1.5 million in subsequent years. This accomplishment was recognized and honored by the Legislature by unanimous passage of an amendment in May 2000, renaming the fund the "Kim Wallace Adaptive Equipment Loan Program." Kim became the public policy analyst for Alpha One in 1997, which required extensive work at the State House, Legislature and at the national level, in Washington, D.C. His awards received in the course of his work which included the Multiple Sclerosis Leadership Award, an Award of Appreciation, from Unity College and the 1998 Outstanding Achievement in the field of mental illness in Maine, by the Alliance for the Mentall Ill of Maine. He was named Outstanding Advocate for the year 2000 by the National Council of Independent Living, New England Region, just prior to his death.

A man of great generosity and joie de vivre, Kim delighted in playing with his children, entertaining and traveling with his wife. He enjoyed all sports, and was an avid Washington Redskins football fan. He maintained loving relationships with his extended family and friends. [Mike Reynolds, from the obituary in the Kennebec Journal]

Bill White
(WROC) A spokesman from the hospital issued a very brief statement Friday night that Bill White had died at 7:03 Friday evening [August, 13, 1999]. White was one of the nation's longest surviving quadriplegic patients on a venilator. The fifty-year-old was paralyzed since a gymnastics accident at the age of eighteen. Earlier this month White issued a statement that he wanted to be removed from the ventilator. A decision which drew a lot of strong opposition from friends and disabled rights activists who say White still had much to contribute to the community. Friends staged a rally outside the hospital to try to persuade White. They also tried to block doctors from removing the ventilator through a temporary restraining order. An effort which failed in federal court earlier Friday afternoon when a judge ruled White has the right to refuse medical treatment. [Teresa Carroll and Stephen Drake]
Bill R White
Prominent in the California deaf activist community, Bill was for many years outspoken on the rights and needs of the deaf, pressing on such issues even before ADA regs came into the picture. He was instrumental in getting the bill passed in the early eighties to have TTYs distributed free of charge in the state. Though it was never directly attributed to him, the bill attained notoriety for sneaking in on the last day of legislation, attached to another unrelated bill. [Barry Strassler]
Ryan White
Cicero, IN
Boyce Williams  
As described by a deaf administrator, Boyce was probably the greatest deaf leader this world has known. Many of privileges we enjoy nowadays (interpreters, captions, TTY access, etc) were ideas that originated from Boyce many years ago. [Barrry Strassler]
Willie Winocur
Willy Winocur was one of the tallest men in a wheelchair that I have ever known. With his wire-framed glasses and beard, he had the air of a wise professor about him. He was rather quiet, unless one could get him talking on a fond subject. We often talked about our thrill at learning to use our new Mac computers, both of us being old enough to not have grown up with computer. [PK Walker]
Geraldine Wright

Geraldine Wright, known as Gerry, died in 1997 at the age of 68. She was born with cerebral palsy, and in those days, the first thing most people did was to put people born with CP into institutions. Gerry's mother put her into a nursing home, after the family moved to Wisconsin from Detroit, Michigan. Even though Gerry's speech was quite difficult, she made it clear to people that she wanted to move out of there, and finally did succeed to become independent with assistance from agencies in Dunn County and Menomonie, Wisconsin. She has always had to have personal care assistance to have her meals made, do housekeeping for her, and much more. Gerry's mobility needs were met with a wheelchair at first, and then later with a scooter. She was often seen out in the streets (yes, streets, especially when snowy weather made sidewalks impassable) and sidewalks. In her later years, she was active at the Senior Center and in her church too. Because of how she struggled to remain independent, a statement Gerry made at a regional hearing on services for people with disabilities became something that many of us remembered that epitomizes what Gerry was about for many of us in the disability community.

Here is the statement that Gerry Wright made at this hearing:

CHOICE: The word choice means that I can live in my own apartment and I do enjoy living in my own apartment. Choice means living in my home town community where I can decide when to go shopping, to the Menomonie Center for craft activities and Wednesday potluck and on group bus trips. Choice means living with support services so I can be in my neighborhood community and not in a nursing home.

I think her struggle to stay independent epitomizes what many of us value in our own lives. [Submitted by Carol Banks, Menomonie, Wisconsin]

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Michael Young
Berkeley Activist and CIL worker, member of the old Alameda County Paratransit Coordinating Council. [J. Nandi]

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Ray Zanela
San Diego, CA
Irving Kenneth Zola
One of our great pioneers from Waltham, MA, Professor Zola put together the earliest disability anthology I know about, which was published in 1982 as Ordinary Lives: Voices of Disability and Disease by Apple-wood Press in Cambridge, MA. My guess is there is something that precedes it, but doesn't fit the current rights and language notions of disability and so I don't know about it. I believe that people like Irv, who died a few years ago, need to be recognized for the path they created for the rest of us. [Steve Brown]

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