5.24.45 – 7.27.13
Additional Articles and Information at the links below:
July 27, 2013 marks the end of an Era. It is the day the Disability Movement lost its “Queen of IL,” Linda Gonzales, the Mother of APRIL. We are heartbroken. Blessings to your family in this time of grief.
Words cannot express what she meant to so many of us. She will remain a symbol of strength and resolve... always hopeful and always loving. She cared deeply about the rights of all people with disabilities and dedicated her entire adult life to empowering us. Life will be dimmer now. The world is missing a very bright light that shone for equality, inclusion and accessibility.
The impact that Linda had on Rural Independent Living is evident in Federal Laws that have been enacted, in language we have come to rely on and in rules we have come to live by. Her impact threads together the Rural fabric that is the IL Movement. It can be felt every year, in every APRIL Conference. Her legacy lives on through the Linda Gonzales Award for Outstanding Rural Youth. We will march forward in your footsteps. We will never let the torch you lit burn out.
You are soaring now, up high like an Eagle. And it suits you. Our dear, dear friend... We love you. We will miss you always.
In lieu of flowers or cards: Linda’s husband, Jerry, has asked APRIL to coordinate the collection of monetary support. The costs are many and any contribution will be most helpful.
Please send donations to:
2001 Pershing Circle, Ste. 200
North Little Rock, AR 72114
*Call the APRIL office at 501-753-3400 if you wish to use a credit card.
Linda Gonzales: Helping Rural CILs Drives Her
She’s a braniac with gorgeous blonde hair and deep red lipstick. In these, her middle-age years, she still can turn heads. She is well dressed and moves through the world in her power chair. Linda Gonzales is also softspoken -- more of a doer than a self-promoter.
Gonzales is a leader who likes to anticipate issues. She sees problems coming and offers answers. She has been looking at the potential funding crisis for centers for independent living (CILs) and is primed to find solutions. She writes a blog for the Independent Living Research Utilization New Community Opportunities Center in Houston, Texas, that focuses on CILs. If your CIL wants to shore up its funding base because of recent or impending budget cuts, she’s got the time and inclination to help you execute workable plans that focus on local resources and community foundations as well as more traditional state and federal opportunities.
In national disability rights history, Gonzales is to rural independent living what Ed Roberts was to urban independent living: its founder. As director of the Association of Programs for Independent Living (APRIL), she got the organization on a firm footing and was the driving force behind its reputation as an innovator.
Gonzales became involved in the disability rights movement as a consequence of graduate school. She graduated in 1981 with a master of arts in education, educational psychology, and guidance counseling from California State University at Northridge, Calif. She had been working on her thesis on the psychosocial needs of people with muscular dystrophy at the same time as her own MD was worsening.
“For many years, I had a diagnosis and a hidden disability,” she said. “The last twenty years, it moved to the lower part of my body, and I eventually ended up using a reclining power chair.” In order to conduct research for her thesis, she attended the Muscular Dystrophy Association’s summer camps. She could have attended as a camper or an assistant.
In Memory of a Pioneer in the Independent Living Movement
Max Starkloff, a longtime activist for disability rights and founder of Paraquad and the Starkloff Disability Institute, two local organizations that help disabled people live independently, died Monday morning of complications from the flu. He was 73.
Monday was the first workday he didn't report to his office the Starkloff Institute since its founding in 2003.
Cards and correspondence can be sent to the Starkloff home at 4446 Laclede Avenue, St. Louis, 63108. A funeral mass will take place on Tuesday, January 4, from 10 to 11:30 a.m. at St. Francis Xavier College Church at Saint Louis University (3628 Lindell Boulevard, St. Louis, 63108). It is open to the public. Visitation will immediately follow the mass until 2:30 p.m. in the Wool Ballroom on the lower level of the Busch Student Center across the street (20 North Grand Boulevard, St. Louis, 63108). Both buildings are accessible, though people with mobile disabilities should get to the church between 8:30 and 9:30 to allow time to be seated. There will also be a sign-language interpreter during the service.
Starkloff broke his neck in a car wreck in 1959, when he was 21. The doctors told him he would have only three days to live. Instead, the accident left him a quadriplegic. Initially, his mother took care of him at home, but after four years, he went into a nursing home.
"I was scared stiff," he recalled in a 2006 interview in St. Louis magazine.
My image was that I would never wear pants again. We found this place in Eureka run by the Franciscan brothers, St. Joseph Hill, and I remember Brother Dismas, this little bitty guy, saying to me on the first day, "You're not going to become our pet. We had another man who was a quad, and he became our pet." I was furious. They were condescending about everything. The minute you become disabled, people talk louder to you.
Starkloff lived in the nursing home for twelve years. He supplemented his formal education, which had ended when he flunked out of SLU High in 1954, with Kierkegaard and Camus. He learned to paint with a brush clenched between his teeth. He fell in love with a physical therapist named Colleen Kelly. And he worked out a plan for an independent living center, a place that would advocate for disabled people and help them live on their own.
"The greatest thing about Max was his creativity," says David Newburger, a lawyer, commissioner for the disabled of the city of St. Louis and one of Starkloff's closest friends. "He saw issues and things that today are obvious, but they weren't then. There he was, stuck in a nursing home, and he developed independently the idea that he would move out into the community, live in an apartment, marry his sweetheart and have a job. He didn't want to spend his life in a place where other people made the decisions for him. He was fiercely independent."
Paraquad, which Starkloff founded in 1970, was among the first independent living centers in the U.S. and the first in St. Louis. In 1975, as soon as Paraquad received its first grant for $5,000, Starkloff used the money to move out of the nursing home and asked Kelly to marry him. "She was his lifelong colleague," Newburger says. "They were together from the beginning."
Among other achievements, the Starkloffs and Paraquad introduced curb cuts and handicapped parking spaces to St. Louis, made St. Louis the first city in the country to have wheelchair lifts on public buses and fought to make more buildings accessible to disabled people. Starkloff co-founded the National Council on Independent Living and served as its first president, and he and Colleen lobbied for the Americans with Disabilities Act of 1990.
To understand just how significant all these changes were, take a look at Annie Zaleski's feature, "You think the Americans with Disabilities Act has leveled the playing field? Try walking in my shoes." Both Max and Colleen play a prominent role in Zaleski's story, discussing what it's like to be disabled in St. Louis, both pre-ADA and today.
"He was very capable," says Charlie Claggett, chairman of the board of the Starkloff Disability Institute. "After talking with him for 30 seconds, his disability faded into the background. He was so gently persistent. He really practiced what a friend of mine calls assertive humility. He'd keep gently pushing his agenda for people with disabilities."
The Starkloffs' influence extended far beyond St. Louis. In the 1990s, they traveled to Japan and were instrumental in building the independent living movement there.
In 2003, Max and Colleen left Paraquad and founded the Starkloff Disability Institute, which they called "the next big step" toward equal rights for disabled people.
"People have trouble envisioning how disabled people can have a job and live in a community," explains Newburger. "The Starkloff Disability Institute helps non-disabled people absorb the idea that it does work, that a person with a disability can work in their work group and live in their neighborhood. One thing that drives us nuts is the word 'special.' We're not special. We want to live and function as ordinary citizens."
Like most lifelong St. Louisans, Starkloff was a devoted Cardinals fan, but his favorite sport was basketball. He and his brother, a Jesuit priest and professor, were regulars at Saint Louis University Billikens games, where, Newburger says, "he had a mad old time. You know how funny those Jesuits can be."
Newburger chiefly remembers Starkloff's sense of humor. "He'd tell jokes about situations he got into," he says. "Non-disabled people were disturbed, but we'd live through them and think they were a riot. One time Max was in an elevator with a friend. The door shut and Max couldn't reach the button. Max was closer to the buttons, so his friend had to crawl over him to reach it. He'd tell this story and laugh. People don't get that our life is fun. He and I had a lot of fun."
Max Starkloff is survived by Colleen, a son and a daughter (another daughter was killed in a car accident in 2008) and four grandchildren. Of all his achievements, says Claggett, "Max was most proud of his family."
"When I told my six-year-old nephew Uncle Max had died," says Bridget Kelly, Starkloff's sister-in-law, "he cried. I asked him what was his favorite thing about Uncle Max. He said, 'Everything.'"
Colleen will remain an executive at the Starkloff Disability Institute.
Mayor Francis Slay said in a statement: "[Starkloff's] life was the stuff of a great movie....He was an example of living a full life as a person with a disability. The designs and operating practices of the City's public buildings, Metro, the St. Louis Zoo, and Busch Stadium reflect his advice, solicited and otherwise. He cannot be replaced, only remembered."
Michael H. (Mugga) Blatchford
We are deeply saddened by the loss of a dear friend of APRIL and the Independent Living Movement. Michael H. (Mugga) Blatchford passed away on Saturday, November 28 of disability-related complications. Mike was Executive Director of ASSIST! to Independence located in Tuba City, Arizona, which has the unique distinction of being the only Independent Living Center and Regional Resource Center for Assistive Technology on tribal lands in the United States. Mike was always very proud of his Center's mission, which is to provide culturally relevant services to a cross disability American Indian population, designed to enhance quality of life and community access through maximizing independence and improving functional skills.
When talking about IL, Mike often patiently explained that "in Native culture, identity is strongly connected to a sense of place and their connection to the land. In order for "Independent Living" to truly take hold and be effective and productive in Indian Country, some changes need to occur that truly honor, respect and respond to the cultural differences that exist. The concept of independent living and the independent living philosophy needs to be presented in the context of wellness, not disability, and services geared toward helping an individual return to balance.
Services offered should be reflective of cultural differences, and very dynamic so they can change to meet changing needs: to accommodate needs that are "survival" based but which allow the individual to return to a balanced state within the present moment - not looking five and ten years down the road. This could include such things as traditional healing and environmental interventions. These types of things would be more culturally appropriate core services to offer." He spent much of every day living and communicating this message to others.
Mike has been a friend and supporter of APRIL as a Board Member since 2001, serving as External Vice President since 2006. He also received the Earl Walden Award for Outstanding Rural Advocacy in 2002.
In a note from his family a few days following his death:
The Hopi's believe that when a soul departs this life to journey into the next world, if they had a big heart and were a good person, then it will snow. I will tell you that the evening Mike passed, it snowed like crazy all night.
Walk in beauty, Mike. We're really going to miss your smiling face and your gentle spirit.
Your friends at APRIL.
Statement by Justin Dart, Jr., Commissioner,
Rehabilitation Services Administration,
To the oversight hearing on the Rehabilitation Services Administration held by the Select Education Subcommittee of the House Committee on Education and Labor, November 18, 1987.
Certainly, OSERS-RSA has, during the past few years, initiated the very progressive new programs indicated by our great supporter, Congressman Bartlett, and my distinguished colleague advocate, Assistant Secretary Madeliene Will.
We must create a continuum of services, attitudes and environments which will enable all of our children's children in every nation to live lives of productivity, dignity and quality in the mainstream of society.
Thank you, Mr. Chairman.
I will do anything - including, if necessary, playing another role - to cooperate with you and your colleagues in the Congress, with the administration, and with my colleagues in the disability community as we strive together to fulfill this sacred responsibility.
Like the founders of our independence and our constitutional government, we must transcend unity with all who love justice to build on the firm foundation which you in the Congress and others in this room have laid.
We have no excuse to fail. We cannot afford to fail.
We have no excuse to sacrifice those responsibilities to self-indulgence and self-destructive hostility.
We are responsible to millions of Americans, and because of the extraordinary influence of our culture, to hundreds of millions of people with disabilities throughout the world in this and future generations. We are responsible to human beings who are forced to exist in conditions to which we would not subject our pet dogs and cats. We are responsible to potentially proud, productive people who are jobless, homeless penniless and hopeless. We are responsible to hundreds of thousands who die years and decades before their time.
We live in the richest nation in the history of mankind. We have great programs like basic vocational rehabilitation, independent living, supported employment and rehabilitation engineering. We have all the human, technological, economic and political resources necessary to effect a cultural revolution which will utilize the methods and products of science for the dignity and quality of human life.
We stand at a historic crossroads. We are approaching foundational decisions about the future of rehabilitation and the fundamental rights of people with disabilities.
Let us not seek scapegoats, let us seek solutions. We have no irredeemable enemies, only enemy attitudes.
Mr. Chairman, I respectfully appeal to you and your colleagues in Congress, and to all present, for guidance, inspiration, moral leadership, and if necessary, support for legislative action which will enable RSA to meet its historic and expanding responsibilities in the nineties and as we enter the 21st century. Help us, above all, to overcome hate and hostility, and to unite.The problems of OSERS-RSA must be solved; and with good faith by all who truly support the independence and equal rights of people with disabilities, they can be solved, and they can be solved without asking any party to compromise on any legitimate issue of principle.
At issue here are principles squarely endorsed by the President, the Congress, all the great leaders of our major political parties and the overwhelming majority of the American people.
Our problems are complex. We are confronted by a vast, inflexible federal system which, like the society it represents, still contains a significant proportion of individuals who have not yet overcome obsolete, paternalistic attitudes about disability and, indeed, about government itself. There is a resistance to any sharing of their centralized authority with people with disabilities, their families, advocates and professional service providers, in or out of the federal service. Good management is too often subordinated to the protection of power. And, magically, a small but all too effective minority in the federal service and in the community seem dedicated to divide and conquer strategy and promoting hostility among government, advocates and professional service providers.
The problem with our external relations is not, in my view, that the state vocational rehabilitation agencies oppose supported employment and other progressive rehabilitation services. My personal research has convinced me that while the problems of people with very severe disabilities have only begun to be solved, the great majority of the rehabilitation profession have - within the constraints of the law - limited resources and massive public prejudice - have been effectively dedicated to solutions. They have, along with great advocacy groups like ARC, NFB, NAD, ACB, UCP, TASH, NAMI, NCIL and NHIF created a firm foundation from which such solutions can occur.
The basic problem here is not simply that Justin Dart is involved in a trivial turf and personality conflict with Madeleine Will. Certainly it is not that the President, who campaigned on a platform of productive independence for all citizens and who endorsed the very progressive concepts advocated in Toward Independence, is personally dedicated to dismantling vocational rehabilitation and independent living.
Mr. Chairman, I have had almost no effective authority to management solutions. But that is no acceptable excuse. I took an oath and I accept a salary as Commissioner of RSA. I apologize to you and to the nation, that in spite of 14 months of struggle working literally 7 days a week, in spite of 8 months of appeals for serious attention and definitive action through the regular channels, efforts by my colleagues and myself to resolve our problems have not been successful. Faced now with the possibility that paternalistic central control, non-professional management and policies of hostility will be institutionalized for years by current revisions of organization and policy, I ask for your help, and that of the community.
But Mr. Chairman, based on my experience as Commissioner, and my personal research in each of the fifty states, and five our largest Native American Nations, I must report to you that OSERS-RSA has been for many years, and is today, afflicted - particularly in its central office -- by profound problems in areas such as management, personnel and resource utilization. We are ravaged by disunity and hostility internally and in our vital relationships with our state agency and grantee partners, and certain other segments of the disability community. As I reported to Senator Harkins last month, I believe that these problems are negatively impacting services to citizens with disabilities.
During my tenure as Commissioner, RSA has - thanks to the valiant efforts of our undermanned staff - accomplished much that is positive.
Our agency, our community is confronted by grave challenges, magnificent opportunities and future decisions. The time has come to rise above pride and protocol, to face reality, and to unite in responsible, democratic action.
Mr. Chairman, my prepared presentation and other materials has been and will be submitted to you. Because the issues we address today involve the fundamental human rights of millions of people with disabilities, and the basic principles of democracy and good government of the President, Congress and the Nations, I am going to depart from politics as usual protocol to make a statement of conscience.