CEREBRAL PALSY

Cerebral Palsy. What is it? How do you get it? Can it be cured? Is it communicable? These and many other questions are asked daily by the nearly one million people living with Cerebral Palsy in America today, and by the thousands of families whose children are diagnosed with it annually.

“Cerebral”, of course, refers to the brain and its functions. And “palsy” refers to muscle weakness and poor control. Thankfully, it is not progressive in that the brain damage does not increase, but the physical symptoms of muscle spasticity, impaired speech and other secondary conditions can improve, worsen or stay the same. Symptoms, both mental and physical, vary widely from individual to individual. Causes are just as numerous, ranging from a fever during infancy or delivery trauma to oxygen deprivation at birth. Although not a disease in the truest sense of the word, it cannot be “cured” by injection or operation.

Cerebral Palsy. or, CP, to those adverse to descriptive medical terminology. CP has no cheerleaders, role models or spokespersons to plead for more research funds or compassion. CP has no Michael J. Fox, Jerry Lewis or Lou Gehrig starring in public service announcements during late night television. Ironically, William Wordsworth (1770 – 1850) remains one of the most insightful people of his age (or any other period) when he wrote, in ODE, “Thou, whose exterior semblance doth belie thy soul’s immensity..” To any individual, friend, relative or loved one, that one, terse phrase speaks volumes.

Not until some years after Wordsworth’s death was CP even recognized as a separate medical occurrence. In the 1860’s, an English physician, William Little, penned the first medical insight into a strange malady that afflicted children in the first few years of life and seemed to cause stiffness or spastic muscle contractions in legs and arms. Certain children did not seem to develop motor skills as they grew older and could not walk, talk, crawl, sit up or even speak normally. Science has not progressed substantially since that time, but attitudes and accessibility have.

Traditionally, medical and legal fields have competed for dominance in a child’s early years once Cerebral Palsy is identified. Medically, little can be done other than prescribe therapy to lessen the muscular restrictions imposed on the individual patient. Litigation to access blame and monetary damages has become a growth industry. To be sure, as individuals mature, there will be numerous support services required such as personal assistance, therapy, transportation and vocational training which cannot all be totally supplied by social agencies overwhelmed with caseloads and budget constraints. When justified, financial assistance can be a blessing to many.

The fortunate child/parent though, are those who are advised to seek ongoing training and education to maximize the child’s independence throughout his or her lifetime. By and large, school systems today make every effort to mainstream students as much as possible and provide as much intellectual fulfillment as can be absorbed by each child. Ponderous federal, state and local ordinances “demand” these opportunities be available, but, until recently, have done little to address the challenges later in life.

The advent of the Americans With Disabilities Act, effective January 26, 1992, opened the door, inch by inch, for people with CP and other severe mental and physical and/or mental limitations to an unprecedented number of leisure pursuits, employment opportunities and access to a host of goods and services that are essential for the growth and development of all. Slowly, but surely, physical and attitudinal barriers are removed state-by-state, city-by-city, block-by-block. Many organizations pay lip service to these improvements but falter when the cost of renovations are factored in, but progress is evident everywhere.

This progress is evolutionary, rather than revolutionary, so slow and steady will win the race. Eventually. There are no visually impaired women burning their undergarments or people in wheelchairs running, er, rolling, in the streets demanding equality. However, each year, municipalities budget for needed improvements or risk losing federal funds. Each year, buildings, large and small, are renovated or demolished and built anew. Building permits are not granted unless these new, or nearly new, facilities are accessible to all.

Given the opportunity, people with Cerebral Palsy can get an education, have meaningful jobs, get married and raise families and live in homes of their own, given the opportunity for independence and inclusion in our society rather than secluded behind walls of ignorance or walls or concrete.

JACKSONVILLE MUNICIPAL STADIUM

By Jack Gillrup, ADA Consultant

Built on the site of the original Gator Bowl stadium (circa 1946), the Jacksonville Municipal Stadium (JMS) stands as more than a monument to civic progress and cooperation. It is a symbol of equal access and enjoyment for people with disabilities everywhere.

The revered Gator Bowl was home to generations of high school and college football games, concerts and tractor pulls until one fateful day in the fall of 1993. That was the day that NFL Commissioner Paul Tagliabue announced that the underdog Jacksonville Jaguars had been awarded the 30th NFL franchise in America. All well and good, but the ancient Gator Bowl was no where near being up to the stringent standards established by the highly efficient and well tuned NFL.

History has shown that the JSM was planned and completed in record time and at a cost of $121 million dollars. As a result of enthusiastic cooperation between the contractors and architects of HOK, Inc., the Jaguars and City officials, the new stadium was completed in record time. Instead of the usual construction time of 30 to 36 months, the opening game debut set by the NFL as September 5, 1995, demanded an unheard of window of only 20 months! It was an exciting time for everyone, but headlines of the day don’t tell the entire drama that played out during those heady days.

Long ignored in Jacksonville, and everywhere else in America, was the legion of sports enthusiasts with disabilities who had been excluded from small town and big time sporting events because of stairs, steps and other barriers. At some point in the 1970’s, Jacksonville had made token improvements to the Gator Bowl by constructing small platforms in all four corners of the end zones. This specially marked, “Handicapped Seating” was woefully inadequate by today’s standards. Too low, too small and too late was how they were viewed by people with disabilities.

As soon as the announcement awarding Jacksonville an NFL team was made, I, as the Chief of Disabled Services for the City of Jacksonville and its Americans With Disabilities (ADA) Coordinator began lobbying then Mayor Ed Austin to let me get the community involved in making this new stadium as user friendly and accessible as possible. He gave me his blessing and we involved one of his advisory boards, the Mayor’s Disability Council (MDC), in the process. Composed of eleven private citizens representing a cross section of a variety of disabilities, the MDC quickly became swept up in “Jaguar Fever” and spent days, weeks and months reviewing blueprints, meeting with Jaguar and City officials, and poring over the relatively new ADA standards for construction.

In spite of the fact that the word, “stadium” appears rarely in the ADA guidelines and all involved were only amateur architects, there were few hurdles that were not resolved by consensus and discussion. Accessibility decisions were awaited by all levels in the process, and MDC members and I would often have to go room to room, meeting to meeting, at City Hall, announcing our decisions. It was a heady time.

Several, behind-the-scenes, happenings deserve a place in this account. One of the people I recall seeing crawling about on hands and knees while helping some of our group too impaired to have a look at all the blueprints themselves was a young man named John Delaney. John was Mayor Austin’s Chief-of-Staff at the time and as helpful as he could be. No one suspected he would become Jacksonville’s next Mayor two years later, but his experience working so closely with people with disabilities served the disabled community well. During his eight year administration, Mayor Delaney instituted hundreds of millions of dollars in the renovation and construction of City buildings, parks and other venues and never forgot his experience working on the JMS. Each and every new project was reviewed by me and/or the MDC and did not get started unless, and until, we approved its merit and accessibility.

Construction and design were not without problems. In mid 1994, the State of Florida amended its building code to include a dedicated lavatory, or sink, in every wheelchair accessible toilet room and stall. By that time, however, construction had proceeded beyond the point of just being able to hang a sink here and a sink there. There simply was no room in those days when abiding by early ADA standards, so a waiver was sought and granted by the Standards Board in Tallahassee. It was clearly not Jacksonville’s intent to get away with anything that would have a negative effect on anyone with a disability’s enjoyment of their visit to JMS. Numerous wheelchair friendly sinks were placed in the restroom common areas and several family, or unisex, restrooms were situated around the stadium to compensate for this omission.

Finally, I will never forget the day I was visited by two large, serious looking men who announced they wanted to discuss the early stadium construction. Dressed in Fedoras and mohair overcoats, they looked all the world like Damon Runyon characters. Today, we’d describe them as looking like a casting call for the SOPRANOS. Actually, they were project directors for the stadium and had been told by the Mayor that all decisions had to be approved by yours truly and they wanted to know what I needed to see done. For the next two hours I had to explain all the features we expected to be built in were prescribed by state and federal law, not some whim of mine. This appeared to be an unheard of concept to them, but they gradually understood. We almost came to blows when I told them how many wheelchair spaces the stadium must contain. The stated, “one percent” didn’t sound too bad, but when they did the math, they were aghast that over 1400 spaces and companion seats must be set aside.

In spite of everything, the resulting building, “the old Gator Bowl”, to many up to this day, is a wondrous thing to see and visit. Gone are the barriers no one really thought about in the “old days”. One must search out stairs to climb. Ramps, escalators and elevators abound. Bathrooms, snack counters and the press box welcome anyone with a wheelchair or other mobility device. Anyone with a hearing impairment gets free and unlimited use of assistive listening devices. Service animals accompany many visitors to JMS and attendants always seem to find room for them. Even the (I’m not making this up) seeing eye pony who shows up now and then.

To our knowledge, ours was the first NFL stadium in the nation to be constructed to ADA standards. We are all proud that lessons learned here in Jacksonville served as the basis for creating new stadiums throughout America that provided justice, and access, for all.

BASEBALL GROUNDS OF JACKSONVILLE

By Jack Gillrup, ADA Consultant

In order to fully appreciate the accessibility of the Baseball Grounds of Jacksonville you must have suffered through a few innings at its predecessor, the Samuel W. Wolfson ball park.

Built in 1955, Wolfson Park was a model of barriers and poor design if you happened to have any sort of mobility impairment or used a wheelchair in particular. Even though it was built for upwards of 8.000 fans of the beloved Jacksonville Suns, more than a generation before passage of the Americans With Disabilities Act (ADA), there were efforts over the years to make things more user friendly for “the disabled”.

Back in those “good old days” there were no elevators, Disabled Parking Spaces, lowered counters, wheelchair seating (much less restrooms!) or other amenities we’ve come to take for granted at municipal venues here in Jacksonville. Gradually, public demand brought about the addition of several, narrow parking spaces, outlined in blue paint, near the ticket windows. Grab bars were added to equally narrow bathroom stalls later on as were directional arrows showing the long, winding path from the parking area to an area set aside as “handicapped” seating.

An abomination by today’s standards, this area consisted of a little shelter made of 2 X 4’s and chicken wire placed along the foul line between home plate and first base! Folding chairs were provided for family, friends and attendants and damage from rain, sun and foul balls was somewhat minimized.

Fast forward now to 2003 and the lovely, larger (11,000 capacity) Baseball Grounds became the newest product of the Better Jacksonville Plan, Mayor John Delaney’s idea of civic improvement on a colossal scale. Gone was the chicken wire, 2 x 4’s, narrow parking spaces and narrower toilet stalls. Gone was the concept that fans with disabilities were second tier fans deserving of second rate facilities.

The City of Jacksonville and the management of the Jacksonville Suns went all out to make taking you out to the old ball game a memorable and pleasant experience for everyone. State and federal building regulations were carefully studied by contractors and architects, eager for an opportunity to be a partner in this great project. Input was sought from people with disabilities throughout the area to make certain that the needs of people with all types of disabilities were met and exceeded whenever possible.

Perhaps the best testimony of how far accessibility has come to the nation’s official sport can be found on the stadium’s own website. Visitors are reminded of the accessible wheelchair and companion seating at all price levels, water fountains, restrooms (male, female and family), drop off area and parking for vans and automobiles alike, Braille markings, elevators and even TTY phones to call a cab if you need one. Have a service animal? Even a seeing eye pony? No problem. ALL are welcomed and accommodated.

As the late, great comedian known as Jose Jimenez used to say, “Bazeball bin berry, berry good to me”. He might have added for those of us with disabilities, “Thanks, Jacksonville”.

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