To the National Council - Part 2

Lex Frieden and His Initial Council Staff Team

Once I began to work at the Council, I got to know a lot more about my new boss, and found that he was quite an interesting guy. Although Lex had lived in Houston for some time and usually styled himself a Texan, he originally haled from Alva, a tiny town in northwestern Oklahoma, not far from the Kansas border and a little over a hundred miles southeast of Dodge City, with its old west, Long Branch Saloon, Wyatt Earp, and Bat Masterson connotations. Lex would describe his upbringing in Alva as straight out of “Ozzie and Harriet” – the radio and T.V. situation-comedy program of the mid-1940s through the mid-1960s, which featured wholesome, small-town living and an abundance of parental nurturing. Lex played the trumpet in his school band and was an active member of his Boy Scout troop. He was an excellent student, graduated high school as his class valedictorian, and earned a scholarship to Oklahoma State University.

At the beginning of Thanksgiving break during his freshman year in 1967, he and four of his buddies went out for a night on the town, which involved consumption of quantities of alcohol. Driving erratically through downtown Stillwater, not far from the University, the Camaro in which Lex was riding in the backseat crashed head-on into another car full of students. Both cars were demolished. Eight of the nine students involved were quickly taken by ambulance to the student infirmary for emergency medical treatment. Lex, who was unable to get out of the car, was the last one rescued and taken to the medical facility, where he was placed on a cot, unable to move. He tells a chilling story about the infirmary nurse, who was not used to treating serious injuries, making triage decisions based on visible signs of bleeding or bruises, leaving him to lie there immobile, repeatedly asking to see a doctor, while the nurse kept putting blankets on him to treat what she assumed was simply shock.

The other students, who had various visible injuries, came away without serious long-term consequences from the car crash. Although he had no externally perceptible wounds, however, Lex’s neck had been broken at the fifth vertebra (C-5), a pretty high level of spinal cord injury. The accident left him with almost no ability to use his hands and nearly total paralysis of his trunk and legs, although he retained full use of his neck and facial muscles, and the ability to raise his arms and bend his elbows to some degree. After six weeks in the hospital, Lex spent three months in a rehabilitation program at the Texas Institute for Rehabilitation and Research (TIRR) in Houston (TIRR was originally the Southwestern Poliomyelitis Center, located in Houston when the area had one of the highest incidences of polio cases; after polio vaccines ended the polio epidemics, the Center was renamed to reflect a new focus on rehabilitation of catastrophically injured people). At some point during his rehabilitation, Lex reluctantly accepted the fact that his disabilities were permanent and that he would not walk again.

Before the beginning of the next school year, he decided to go back to college, albeit not to Oklahoma State University, because while there he had noticed the problems a student with disabilities had had due to inaccessible facilities. He decided to apply to Oral Roberts University which, he had discovered, had brand new buildings with accessible entrances. Despite his sterling academic record and test scores, he was, as the Dean of Admissions admitted, rejected for admission because he had stated on his application that he used a wheelchair. Although it was an unexpected, bewildering slap in the face to Lex, at that time rejection of students with disabilities was a common, accepted practice.

Ironically, Lex ended up going to the University of Tulsa, a school that at the time he enrolled had no academic buildings that he would be able to access on his own. That turn of events came to pass because of an eventful meeting with university officials in a parking lot. Lex had arranged to meet with the dean of the college of education to discuss whether there was any possibility of his pursuing his degree there. The dean suggested that they meet one another in the parking area serving his college, and when Lex arrived and wheeled out of a van in his electric wheelchair they started talking right there on the blacktop. As they discussed the various degree programs that might be available for Lex, every option seemed unworkable because of inaccessible entrances, inaccessible floors, inaccessible classrooms, and the like. Lex was becoming increasingly discouraged, until the dean of students walked up and joined the discussion. He pointed out a partially constructed building nearby, one without steps at the entrance, and said that it would be finished by the time Lex would be enrolling and would be accessible. In a sudden burst of inspiration and generosity, he told Lex that, after figuring out which classes he wished to take, Lex should call him and he would arrange for them to be offered in the accessible building. The deans handed Lex a university catalog and invited him to enroll. Lex, somewhat awestruck at the brilliant simplicity of the dean of student’s suggestion of moving classes to the new building, quickly took them up on the offer.

He likes to characterize the dean’s brainstorm as “the miracle in the parking lot.” The idea that if the facility in which an academic course is being offered is not accessible to and usable by students with disabilities the course can be offered in another facility that is accessible would later be applied to educational institutions under federal Section 504 regulations (and even later more expansively under the ADA) as the “Program Accessibility” requirement. To avoid discriminating on the basis of disability, covered academic entities can either make their existing buildings and classrooms comply with accessibility standards (facility accessibility), or they may reassign classes and other curricular elements to a facility that is accessible (program accessibility). Lex has also suggested more generally that the deans’ efforts to make common-sense adjustments to their programs to permit him to participate were the kind of appropriate and practical modifications that regulations would later require under the rubric of “reasonable accommodations.” In any event, the dean’s accommodating approach worked and, in 1971 Lex earned a degree in psychology, cum laude, from the University of Tulsa. Shortly thereafter, he did a research internship at the Baylor College of Medicine, and started graduate school in social psychology at the University of Houston. He soon reunited with renowned rehabilitation innovator, Dr. William Spencer, who during Lex’s previous period of rehabilitation at TIRR, had become a mentor to him. Spencer had grown increasingly interested in and supportive of fostering independent living skills and philosophy. With the sponsorship of TIRR and the federal Rehabilitation Services Administration, a group of former TIRR patients had started the Cooperative Living Residential Project, which provided dormitory style living in a barrier-free building, where the residents hired and managed their attendants, and shared arrangements for transportation. While pursuing his graduate studies (including research and teaching responsibilities), Lex lived in the Cooperative Living dormitory.

One day he met a fellow named Mac Brodie, who was living in a halfway house and had volunteered to work with the tenants of the cooperative living facility. Mac had been slammed into a tree by a land mine while serving as a soldier in Vietnam and had suffered a serious brain injury. As a result, he lost most of his short-term memory and much of his ability to think and make decisions. Lex and Mac quickly hit it off, became friends, and began a remarkable partnership. Mac helped Lex with numerous physical tasks, such as getting dressed, personal hygiene, and handling eating implements and drinks; and Lex assisted Mac in matters of memory, and in processing information, making decisions, managing finances, and keeping organized. Their interaction and mutual support was so smooth and effective that a picture of Mac and Lex should be next to the word “symbiosis” in the dictionary.

Based upon his enthusiasm and first-hand experience, and with the benefit of some tutelage from Dr. Spencer, Lex became an early advocate for, and authority on, the innovative independent living approach to disability. He developed service and training programs featuring and promoting decision-making by clients, and was involved in the formulation of seminal definitions of “independent living” and “independent living program.” In 1974, he began what would turn out be a very significant interface with federal legislative goings-on when Dr. Spencer sent him to Washington, DC, to try to interest members of Congress in funding independent living centers. He met with several members of Congress and talked-up the need for such programs and stressed the need for their being run by individuals with disabilities. Lex’s efforts, along with those of many other independent living advocates (including notably those of Ed Roberts and his band of colleagues from the Berkeley Center for Independent Living, and Fred Fay, one of the founders of the Boston Center for Independent Living) bore fruit in 1978 when Congress passed legislation providing grant funding for ten independent living centers – the beginning of a process that led to establishment of such centers in every state and U.S. territory.

Back at the University of Houston, Lex crossed paths with and was smitten by a fellow student named Joyce Cassel. They met at a rally he was hosting to try to form a coalition of organizations involved in disability issues. Joyce’s interest in disability arose from the fact that her lower body was paralyzed from a very rare condition that doctors diagnosed as “encephalomeningiomyelitis.” That cumbersome term is apparently formed from the combination of three medical conditions: “encephalitis” – inflammation of the white and gray matter of the brain; “encephalomeningitis” – inflammation of the brain and meninges (membranes covering the spinal cord and the brain); and “encephalomyelitis” – encephalitis accompanied by infection and inflammation of the spinal cord. Joyce had all three life-threatening conditions at the same time. The combination of the three conditions (or at least the amalgamated label) is so unusual that when I first looked up the term “encephalomeningiomyelitis” on Google I found only references to entries about Joyce and her situation. The effects of this three-headed scourge were dire, and she was not expected to live. Joyce was trying desperately to get her affairs in order (she was only in her early twenties) when, somehow, her condition suddenly and unexpectedly stabilized and the threat to her life began to recede. Her recovery was astonishing, but not complete, as she was left with paralysis in her legs and lower body. She was in a rehabilitation facility for one year, and then spent another year learning to live independently.

Initially, she thought that she would try to find a partner who did not have a disability with the thought that it would help with the practical limitations resulting from her use of a wheelchair. But a couple of years later, she encountered Lex and admitted that she was ultimately more attracted to brains than to rudimentary physical capabilities. She says, “I figured between the two of us, we could figure out a way around any problem.” In 1977, they eloped to D.C. and were married at the front of the Jefferson Memorial. To the Lex-Mac duo, Joyce brought, along with her warmth, intelligence, and congenial personality, some very important additional skills to the mix, including driving, doing the shopping, and dealing with a multitude of other chores that the two men could not easily handle. Joyce should accompany Mac and Lex in that picture I suggested be included in the dictionary entry for “symbiosis.” She also brought her lovely daughter Melissa to the marriage. The resulting domestic unit is admirably efficient, loving, stimulating, and adventurous. Add in a couple of dogs, usually very big ones, and you have an idea of the wonderful family that I met and became very fond of after I joined the staff of the National Council.

After joining the staff, I met and got to know the other members of Lex’s family only gradually, at Council events and social occasions, but I worked with Lex and Mac each working day, and I observed my new boss up close as he approached his tasks of directing the Council and managing the small but mighty staff. Initially, he filled only the Research Specialist and the Adult Services Specialist positions – hiring me to fill the former and Ethel Briggs, who previously was chief of the Office of Staff Development and Training at the Rehabilitation Services Administration, in the latter. Lex also hired Brenda Bratton as secretary, and she, Executive Assistant Marilynne Gisin, Ethel, and I comprised Lex’s entire staff at the beginning. All of us except Marilynne, who was a carry-over from the Department of Education predecessor of the Council, started work early in March of 1985. As the staff of the organization that was congressionally charged with reviewing and evaluating all federal laws affecting people with disabilities, formulating recommendations and legislative proposals to the President and Congress, and presenting all of this in a formal report by February 1 of the next year – less than eleven months away – we certainly had our work cut out for us.

Continue on to Part 3: The National Council’s Origin, and Prior Personnel and Activities