This is what a “wheel chair accessible” restaurant looks like in segregated State College PA.
Video by Emily Hartsay
Cafe Verve received an operating license from Walt Schneider, head of code for the PA Centre County Council of Governments. To receive the license, the restaurant was required to comply with the Americans with Disabilities Act. Specific enforcement of ADA in this instance was defined by Commonwealth building code which establishes public access requirements. As a restaurant seating 50 or fewer people, Cafe Verve was required to spend $4,000 to meet the disability-friendly requirements in the building code. The restaurant decided to spend twice that sum making the bathroom in the restaurant wheel chair accessible and paying for a sign saying so. However, the restaurant was not required to make the entrance wheel chair accessible.
In February, I called Walt Schneider to ask for an explanation. On May first, I met him at a meeting of the Bellefonte Borough Council. There, Walt promised to get back to me in two weeks to explain why the Cafe received an operating license.
On August 17th, Walt finally got back to me with the answer. The answer is that the restaurant was required to meet Commonwealth and Borough of State College regulations on accessibility for public accommodation. However [repetition is good for the soul], while Cafe Verve was required to make accommodations, the restaurant was not required to make the entrance accessible. Exclamation point.
At that occasion, there was a still-ongoing Pennsylvania Human Relations Commission formal complaint against the seven “liberal” members of the Borough Council of State College [see Phil Ochs] for disability discrimination in public accommodations and housing, Walt promised to get back to me “soon” so I could institute a voluntary discussion with the owners to resolve the issue. I had hoped to negotiate with Freddie Irani, one of the proprietors (and with the others whose names he agreed to provide) so I could celebrate on October 12th my seventieth birthday as a mensch. Walt pulled a Waldo again.
My plan was to celebrate my birthday with my two vegetarian daughters and my one-year old granddaughter in the new vegetarian restaurant that had just opened across the street from my apartment. Instead of driving my Amigo mobility device into the front door, the government of State College required me to crawl. Consequently, I adapted Lesley Gore’s classic and sang, “It’s My Party and I’ll Crawl if I Want To.”
The authors of Middletown, Robert S. Lynd and Helen Merrell Lynd, were distinguished sociologists who taught at Columbia University. They studied Muncie, Indiana (to which they originally assigned the name “Middletown”) using cultural anthropological technique. 
“Middletown” is widely regarded in academia as a classic example of sociology as a science (in the tradition of Émile Durkheim.  The paper you are about to read models the Lynds’ work as scaffolding to display relevant interrelated issues in State College, PA. Relevance applies to evaluating renovation of existing housing for the mobility disabled. Success is achieved when the project provides independence to the resident of the home being remodeled. Two factors are key. First, accessibility within the home. Second, the appropriateness of the community where the house is located.
Émile Durkheim was a French sociologist who rose to prominence in the late 19th and early 20th centuries. Along with Karl Marx and Max Weber, he is credited as being one of the principal founders of modern sociology. Chief among his claims is that society is a sui generis reality, or a reality unique to itself andirreducible to its composing parts. It is created when individual consciences interact and fuse together to create a synthetic reality that is completely new and greater than the sum of its parts.
This reality can only be understood in sociologicalterms, and cannot be reduced to biological or psychological explanations. The fact that social life has this quality would form the foundation of another of Durkheim’s claims, that human societies could be studied scientifically. For this purpose he developed a new methodology, whichfocuses on what Durkheim calls “social facts,” or elements of collective life that exist independently of and are able to exert an influence on the individual.
“Émile Durkheim (1858—1917),” Internet Encyclopedia of Philosophy, A Peer-Reviewed Academic Resource, Paul Carls, University of Montreal, Canada. 
This paper provides a generic understanding (for want of a better term) of the issues critical for successfully renovating existing housing to make it wheel chair accessible. Accessibility is only achieved when the resident is able to function independently. [A detailed definition of “Independence” appears later on in this paper.]
Success requires that one or more of the following users or user groups take a leadership role in directing the design of the renovation:
The resident who is mobility disabled but who still has the physical and emotional resources to live independently.
2. The family and/or friends of the resident who may be called upon (in the aftermath of the emergency that caused the disability) to make critical design decisions functioning temporarily in effect as in loco parentis.
3. Relevant members of the architectural engineering and construction (AEC) community.
This paper is in effect a consequence of a work-in-progress: a technical paper for the Pennsylvania Housing Research Center (PHRC). The technical paper “Renovating existing housing to provide individuals with mobility disabilities the opportunity to live independently” focuses on the requirements for renovating an existing house. My coauthor PHRC Director Ali Memari suggested this white paper might serve to help get the technical paper back on track.
Indeed, both papers are closely related. The technical paper describes a house that comports with criteria Dr. Memari has selected as being model useful for obtaining the attention of the architecture, engineering and construction (AEC) community. The technical paper focuses on such details as:
Ramps for entering and leaving the house
Redesign of specific rooms, such as the bathroom, to avoid dangers (most notably falls) that might result in the resident losing independence and being forced into a nursing home
Use of mobility devices, such as a scooter, which when used appropriately can be regarded as architectural tools. For example, a narrow relatively inexpensive scooter could save renovation costs by obviating the necessity to tear down walls.
Both papers emphasize the significance of preserving the resident’s independence and provide measures for avoiding the necessity of being forced into a nursing home. The technical paper discusses the prophylactic measures in room by room detail. This white paper (based on eight years of experience and observation) benefits from observing situations where a resident dies unexpectedly or requires intense health care from an assistive leaving facility.
This white paper provides guidance to a resident who has recently become mobility disabled. Understandably, in a rush to provide safe accommodations following an unexpected tragedy (i.e. losing the ability to walk), the focus often becomes the provision of a quick fix.
For example, the most dangerous room in the house is the bathroom. Providing a safe environment in which to bathe, go to the toilet, shave, or otherwise care for one’s hygiene and appearance, the solution focuses on safety. How does one prevent dangerous falls that might result in loss of one’s independence and thus being forced to relocate into an assistive living facility (commonly known as a nursing home)?
I took the photograph above in 2012. It shows a safety feature in the bathroom of the Blueroof Experimental Cottage in McKeesport, PA where I lived for two weeks. I am a paraplegic incapable of walking at all. I can stand, but have to do so holding on to a fixed object for support.
The safety feature makes apparent the John Donne “no man is an island” perspective that is the central theme of this white paper. To respond to my hypothetical call, there must be Internet service to summon assistance from 911. There must be an ambulance to provide help and a nearby hospital equipped with trained personnel.
The expression “we sit on the shoulders of giants” is applicable. The specific giants are Robert Staughton Lynd and Helen Merrell Lynd. The work in question is the cultural anthropology classic Middletown: A Study in Modern American Culture, published in 1929.
The Lynds objective in studying Middletown (an idealized construct they had preferred to be anonymous but was Muncie, Indiana then a town of 30,00) was “to present a dynamic, functional study of the contemporary life of this specific American community in the light of trends of changing behaviour observable in it during the last thirty-five years.”
The objective of this white paper is to codify the research I have done on being mobility disabled since I first lost the ability to walk in 1994 to now 2017. The Lynds struggled with the notion of objectivity as I do now. They wrote of “the danger, never wholly avoidable, of not being completely objective in viewing a culture in which one’s life is imbedded [sic], of falling into the old error of starting out, despite oneself, with emotionally weighted presumptions and consequently failing ever to get outside the field one set out so bravely to objectify and study…”
For the Lynds, what made their study a cultural anthropology classic was their ability to approach Muncie, Indiana with the dispassion one associates with an anthropologist studying a remote tribe in the Sandwich Islands. For me dispassion was made possible by my there-for-the-grace-of-God-go-I self-preservation perspective that has made it possible for me to live in an independent living facility for the past eight years that houses 93 people on eight floors.
The Borough of State College, PA (where I live) with a population of 40,00 is comparable in size to the community the Lynds studied in the 1920s. The isolation of an independent living facility housing the elderly (a minimum age of 55 an actual age considerably older) and the disabled (physically and emotionally) makes clear the contempt society at large has for those of us who make the triple error of being elderly, disabled, and of low-income.
As with the Lynds, I had researchers assisting me. Unlike the Lynds, my fellow researchers have been neighbors and friends many of whom have died or been relocated to even more isolating warehouses (i.e. independent living facilities).
Below is a photograph of Terry Stuart, a resident of Addison Court, the independent living facility where I live, who died in his bed this summer at his eighth floor apartment.
Terry’s sister told me the cause of death was a heart attack. She said the physician indicated that severe dehydration caused the stress on his heart that led to the attack. I suspect Terry would be alive today if he resided in a place where he were not isolated from the community at large and if the residents of the Borough of State College cared whether he lived or died.
The principles for avoiding a nursing home are in part a consequence of my reflection on how Terry’s death might be avoided. In Terry’s case I suspect that an informed understanding of wellness might have made a considerable difference in outcome. Consider: “Health and Wellness (as defined by the World Health Organization): a state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity.”
This white paper discusses other principles that if followed might have prevented Lilian Hutchinson shown above from an a situation where she had no choice but to go to a nursing home. It would be easy but incorrect to point to the independent living facility in which we live and assign blame. The reality is that Addison Court does an excellent job of maintenance.
Nevertheless, landlords here and throughout the Borough would benefit from guidance and community support to assist residents continue to remain independent. Upon examination, I am convinced that other friends and neighbors who no longer reside at Addison Court would benefited had the principles I have generated for the technical paper on renovating existing housing had been applied to their circumstance.
The Lynds write: “A clue to the securing both of the maximum objectivity and of some kind of orderly procedure in such a maze may be found in the approach of the cultural anthropologist. There are, after all, despite infinite variations in detail, not so many major kinds of things that people do. Whether in an Arunta village in Central Australia, or in our own seemingly intricate institutional life of corporations, dividends, coming-out parties, prayer meetings, freshmen, and Congress, human behavior appears to consist in variations upon a few major lines of activity: getting the material necessities for food, clothing, shelter; mating; initiating the young into the group habits of thought and behavior; and so on. ”
The organization of this white paper follows the organizational arrangement of Middleton which follows the six main-trunk activities listed below.
The Lynds write: “This study, accordingly, proceeds on the assumption that all the things people doing this American city may be viewed as falling under one or another of the following six main-trunk activities:
Getting a living.
Making a home.
Training the young.
Using leisure in various forms of play, art, and so on.
Engaging in religious practices.
Engaging in community activities.”
Following the Lynds’ model:
Getting a living
While an effort will be made to make clear at certain points variant behavior within these two groups [professional and working class], it is after all this division into working class and business class that constitutes the outstanding cleavage in Middletown.
The mere fact of being born upon one or the other side of the watershed roughly formed by these two groups is the most significant single cultural factor tending to influence what one does all day long throughout one's life; whom on marries; when one gets up in the morning; whether one belongs to the Holy Roller or the Presbyterian Church; or drives a Ford or a Buick; whether one's daughter makes the desirable high school Violet Club; or one's wife meets with the Sew We Do Club or with the Arts Students' League; whether one belongs to the Old Fellows or to the Masonic Shrine; whether one sits about evenings with one's necktie off; and so on indefinitely throughout the daily comings and goings of a Middletown man, woman, or child.
Income or more specifically the absence of adequate income is the primary reason this paper exists at all. It would be an oversimplification to say that were income not a question, a room-by-room guide to renovating existing housing for a mobility disability would not require amplification. The amplification provided here is the understanding that renovation is not adequate if it does not encompass the neighborhood in which the renovated house is situated.
In 2000, I moved into a brand new apartment complex in San Jose, California. It was in the Japantown section. The grocery across the street sold fresh octopus.
Unlike 90 percent of new housing in the US my apartment was wheelchair accessible. I could scoot to the 100 year old Buddhist temple two blocks away.
To pay the expensive rent, I worked for three start up companies. Initially, money was flowing like water. At one there were elaborate nightly Indian dinners. Then the bubble burst. One hundred percent Hawaii coffee became Columbia. None of my employers –established to produce software produced anything. To use the term vaporwear would be unfair. To call the albeit demanding work anything else would be untrue. As the bubble burst, my landlord raised the rent. Bye bye yellow brick road. Bye bye San Jose.
This is the source for my income.
Isadora Duncan entered my life in the late 1990s. This was a period of significant change. I lost the ability to run; then walk, as a result of spinal damage caused by radiation treatment that cured me of cancer. While my physicians were deciding on a form of treatment (that did not work), I tripped over my feet and fell against the sofa dislocating my right shoulder. At the same time, the Research Triangle Park area of North Carolina, where I lived, suddenly moved from prosperity to dearth, and I could not find work as a technical writer.
Making a home.
Background: Let us start with renovating one’s dwelling place with the clear understanding that what may be required is renovating one’s neighborhood and beyond.
This is the house where I lived when I lost the ability to walk in 1994.
Suddenly in 1994, I lost the ability to walk. I tripped over my toes dislocating my shoulder. This photograph taken in 2016 shows permanent damage to my right shoulder. Had my residence been renovated appropriately to accomodate my mobility disability, I would not have experienced 23 years of pain with limitations on my ability to use my right arm. Alicia J. Spence, physical therapist at Phoenix Rehab, State College, PA says failure to stretch this shoulder on a daily bais could result in the loss of my ability to dress myself. Photograph by John Harris.
Training the young.
Using leisure in various forms of play, art, and so on.
146 Praise ye the Lord. Praise the Lord, O my soul.
2 While I live will I praise the Lord: I will sing praises unto my God while I have any being.
3 Put not your trust in princes, nor in the son of man, in whom there is no help.
4 His breath goeth forth, he returneth to his earth; in that very day his thoughts perish.
5 Happy is he that hath the God of Jacob for his help, whose hope is in the Lord his God:
6 Which made heaven, and earth, the sea, and all that therein is: which keepeth truth for ever:
7 Which executeth judgment for the oppressed: which giveth food to the hungry. The Lord looseth the prisoners:
8 The Lord openeth the eyes of the blind: the Lord raiseth them that are bowed down: the Lord loveth the righteous:
9 The Lord preserveth the strangers; he relieveth the fatherless and widow: but the way of the wicked he turneth upside down.
10 The Lord shall reign for ever, even thy God, O Zion, unto all generations. Praise ye the Lord.
Engaging in community activities.”
Demographics: The special nature of the “Baby Boomer” generation
Regardless of age, there is a housing crisis for individuals with mobility disabilities. This crisis also includes elderly residents of existing housing desirous of continuing to live independently (popularly referred to as “aging in place”) who are concerned about the likelihood of developing a mobility disability.
Dr. Stanley K. Smith, Professor of Economics and Director of the Bureau of Economic and Business Research at the University of Florida, writes: “A survey of Americans aged 45 and older found that nearly one-fourth of the respondents thought it likely that they or someone in their household would have difficulty getting around in their homes within the next five years.”
The nature of the current housing crisis from a disability perspective is four-fold.
In 2010, the U.S. Department of Census estimated there were 35 million Americans aged 65 and older.
Since 2010, the first members of the largest generation in U.S. history has begun to retire—the “Baby Boomers” born after World War II—and there are 76 million of them. They are currently retiring at the rate of 10,000 a day for the next twenty years.
Over 90 percent of U.S. housing stock is not wheel chair accessible making independent living especially difficult for the nine percent of the American people currently with mobility disabilities and the considerable increase in mobility disabilities expected as the population ages.
Current independent living housing stock has already been limited even before the Baby Boomers began retirement. The alternative to independent living; namely, currently overpopulated assistive living in, for the most part nursing homes, results in considerably higher health care costs and limits the ability of residents to develop their talents
Chapter One: Introducing Housing Renovations for Individuals with Mobility Disabilities focuses on what appears to be the ideal situation; namely, involving the clients directly in the process of making the critical decisions about renovating their own homes. The authors decided the most helpful example of the kind of home to be remodeled would be a single or two-story detached residence for one individual or for a family. The photograph below used throughout this report shows what is intended to portray the “generic home.”
This home was chosen because it is representative of much of the housing stock in the United States. As a consequence of the “Baby Boom” following World War II, the U.S. experienced dramatic demographic changes. By 1970 most of the population shifted from cities to suburbs. As a consequence, suburban detached housing such as the one depicted here provides a familiar representation of the kind of residence a significant number of U.S. residents own when the issue of mobility arises.
The ideal situation for renovation is for the individual who becomes disabled or plans for the future to make the critical renovation decisions for oneself. Within the architectural, engineering, and construction (AEC) community it is commonplace to take direction from the client. In doing so, professionals in the building industry present clients with information useful for making decisions. Certainly, if one plans to live in a redesigned residence for a number of years, it is preferable to live in a residence that suits one’s own requirements and taste.
All too often reality interferes with that ideal. Yes, there are individuals who plan for the future who do serve as clients and this report is directed to them. Unfortunately, all too often plans to renovate come as a consequence of a disabling injury or a disease event. A caregiver, who may be a may be a family member or a social worker, or someone else, must make the decisions normally reserved for the client. In addition to clients, this report is also directed toward caregivers. [Involved in disability renovation are a wide-variety of stakeholders including disability equipment and access specialists, building contractors, architects, Office of Vocational Rehabilitation (OVR) counselors, and healthcare officials.]
Chapter One begins with an overview of available housing for disabled and elderly individuals in the United States before discussing the specifics of renovating existing housing which is the central theme of this report. These specifics include:
the magnitude of decisions involved with renovating existing housing
the long-term impact on clients of decisions that must be made
how caregivers can most effectively obtain input from clients
guidance for evaluating whether the client’s residence can be effectively remodeled for a multi-year period of independent living or whether a new housing environment would be preferable.
Chapter Two: Guidelines for Renovation focuses on how to evaluate the priorities involved in making renovation decisions. Involved throughout this kind of renovation are such issues as avoiding falling (transferring, for example, from bed to wheelchair can pose a significant risk) and obtaining access both within the house and without. Here readers are encouraged to evaluate renovation priorities including issues related to trade offs (between what is realistic given budgetary and other considerations).
The remaining chapters take the reader from outside the house to within all the rooms, including when the residence has a second floor. Readers are encouraged to think of these chapters as the core of this report which is essentially a how-to-do-it guide using photographs and text, for example, on how to access the second floor.
Appendix One provides recommendations on future studies. Appendix Two lists resources helpful in the renovation process, such as a listing of suppliers of ramps and grab bars.
The report incorporates significant findings in peer review literature such as a disability study on the grief process after one loses the ability to walk. This has significance because all too often grief may result in limited input from the client during a period when critical decisions are being made by proxy. The report also incorporates the work of relevant institutions such as the Fall Prevention Center of Excellence.
The authors provide readers with access to a range of experience from the details of disabilities to a broad perspective on the architecture, engineering, and construction (AEC) community. Co-author Joel Solkoff, research assistant at the Department of Architectural Engineering of The Pennsylvania State University, lives in an independent living facility for the elderly and disabled and provides his expertise on how to live independently and be unable to walk at the same time.
Co-author Dr. Ali Momari is Chairman of the Pennsylvania Housing and Research Center. As the Bernard and Henrietta Hankin Chair of Residential Construction, Department of Architectural Engineering, The Pennsylvania State University. Dr. Memari’s course work includes building envelopes. Indeed, Dr. Memari is Director of the Building Envelopes Research Laboratory. Dr. Momari’s focus on issues of significance to the AEC community provides a macro view of the housing industry.
Defining Mobility Disability
Residents requiring a house that allows them to live independently may have differing levels of functionality. At one end, the resident may have difficulty walking but does not find it necessary to use a cane. At the other extreme, the resident may be unable to move from bed to wheel chair without the use of a crane that lifts her or him off the bed (toilet, etc.)
The following video displays the value of expert assistance in mastering independence.
Aging in Place
This white paper focuses on the euphemistic academic term “aging in place.” It discusses the issues involved. Certainly, it appears to be desirable to die in the same house one has lived in for a number of years. Doing so, may be a luxury given the paucity of adequate housing stock (most especially in central Pennsylvania) and the broader issues a disabled resident faces in the United States where the majority of Baby Boomers, the most relevant demographic, reside. The majority of Baby Boomers reside in the suburbs as do most of the U.S. population. In the aftermath of World War II and the concomitant prosperity that resulted, the country shifted the concentration of its population from cities to suburbs.
A large majority of suburban residents are dependent upon driving their own automobiles to maintain the quality of their lives. For many of the physically disabled driving an automobile is out of the question or soon will be. Urban areas offer public transportation not always available in suburbs.
Two Useful Concepts
Two concepts are requisite for designing a home in which a resident with a physical disability can live independently.
Architectural design must be implemented employing “experience-based design principles.” These principles codified in academic literature have swept the architectural community. Increasingly, architects [enshrined with American Institute of Architecture (AIA) credentials] have evolved from the iconographic concept of architect as genius, perhaps best personified by Frank Loyd Wright.
Wright eschewed the notion his clients should determine architectural designs for which they paid him a fee. Wright was noted for regarding his client’s homes as his own. Years after his homes had been constructed, he continued the practice of barging in –reproving the residents for living in their homes in a manner he regarded as reflecting poorly on his aesthetics, and forcing them by the power of his personality to change the way they lived.
Audience for this white paper and related genres, e.g.: Technical paper readers, Builder brief readers
Today, the architectural community has become seemingly more modest in its aspirations. Meanwhile, it is useful to focus on the client base for redesigning existing housing to make a home a locus for independent living for the physically disabled.
My generation born after World War II is the largest generation in U.S. history.
“As everyone returned home from the war, the housing situation was not merely tight, it was a crisis,” writes Pulitzer Prize winner David Halberstam in his landmark book The Fifties.
“Some 50,000 people were reportedly living in Army Quonset huts. In Chicago it was so bad that 250 used trolley cars were sold as homes. Estimates placed the number of new houses that would be needed immediately at over 5 million. A federal housing bill was rushed through….The stored up energy of two decades was unleashed. In 1944 there had been only 114,000 new singles houses started, by 1946 that figure had jumped to 937,000; to 1,118,000 in 1948, and 1.7 million in 1950.”
The shift from the population from cities suburbs created a great need for automobiles because living in the suburbs required such transportation. Detroit’s auto industry flourished. When the kiss took place, the price of a gallon of gas was 21 cents. In 1972, I paid 25 cents a gallon for gas. According to the U.S. Energy Information Administration, “The projection for the average retail price in 2015 is $3.38 per gallon.”
1970, the demographics of the United States had changed substantially. No longer did most of the United States population live in cities. By 1970, most of our population had shifted to the suburbs to detached one and two-story homes. Two cars were essential for a working couple with children involved with activities all over town—soccer, baseball, dramatic clubs.
A subtheme of this white paper is the importance of destroying the suburbs. Pulitzer Prize winning journalist David Halberstam describes in The Fifties the significant changes that have taken place in my lifetime—changes that anyone in the architecture, engineering, and communications community must take into account because these changes, for reasons I will continue to reiterate in future columns, must be reversed in a massive demographic shift not seen since 1945.
From all available evidence, the AEC community seems oblivious to this reality and the benefits to U.S. and global society.
Let’s take a sample from Halberstam’s account on how we as a population made the dangerous mistake of moving to the suburbs, dangers to be elucidated:
“What was taking place was nothing less than the beginning of massive migration from the cities to the farmland that surrounded them. Starting in 1950 and continuing for the next thirty years, eighteen of the nation’s twenty-five top cities lost population. At the same time, the suburbs gained 60 million people. Some 83 percent of the nation’s growth was to take place in the suburbs.”
I. The Experience I Bring as a Paraplegic to Housing Design
A. Is desirable achievable?
There is much discussion in academia regarding “aging in place.” Clearly, since we all die, it is desirable to expire in a place where one feels at home. The first principle for designing an aging in place home is to move. I will explain at length below because knowing how to renovate is as important as appraising the economic value of doing so and recognizing that where the disabled and elderly reside requires is requires a larger view of the community where the home is cited.
B. Home Community Relationship
In October I celebrated my 69th birthday in the hospital. I also celebrated my 68th birthday in the hospital.
Relevance to housing:
After a three-year effort, I finally was able to control chronic pain without medication. The effort to have a spinal stimulator surgically implanted was the final answer to the critical question: Would I be able to avoid being forced into a nursing home?
C. Priority: Avoid being forced into a nursing home
How to avoid being forced into a nursing home is central to understanding the concept of aging in place. I have been co-authoring with Dr. Ali Memari a technical paper on how to design independent living housing for the mobility disabled. The paper will be published (fingers crossed) on the website of the Pennsylvania Housing Research Center. Here:
At what point does an independent living house become a realistic expenditure of resources or not?
C. Independent living: Dangers
Most people die in hospitals and nursing homes—not in the houses they lived in before their physical bodies failed them and were redesigned to meet their disability requirements.
The signs that independent living is no longer achievable are:
• Frequent falls
• Infections that cannot be treated at home
• Failure to take one’s medication
• Inability to prepare meals or feed oneself
• Malaise that exceeds one’s ability to control
How to deal with these issues is the central problem to the question: How do I design my home so I can age in place?
Fortunately, I have thus far “mastered” [arrogance thy name is Joel] the lesson learned 22 years ago when I lost the ability to walk. Twenty-two years ago, in denial that I could not walk, I fell frequently. After dislocating my shoulder and becoming a candidate for surgery, I learned how to stop falling.
In the past three years the other issues bullet-ed here have been the focal point of my personal and academic concerns. Most especially this was the case when I found myself in diapers and wondered how long could I maintain an independent living presence?
Fortunately, I persevered
In the interim, I have obtained academically respectable allies in the form of physicians, nurses, occupational and physical therapists. Following surgery in October, for example, my nurse at Medi-Home Services provided guidance on how to avoid bacterial infections.
Last year, I nearly died from a contagious MERSA infection originally a consequence of being in a hospital. Now MERSA contagion is a consequence of residing in facilities for the elderly.
My chapter on the kitchen has been enhanced by occupational therapists—primarily my occupational therapist at HealthSouth Physical Rehabilitation at Pleasant Gap.
HealthSouth has been a major resource—not only for incorporating activities of daily living into kitchen design. It also has provided guidance on how to handle medication. Failure to take medication is the primary cause of hospitalization.
Meanwhile, my home medical care occupational therapist has been helpful in suggesting appropriate equipment for physical exercise—indispensable for maintaining independence. Also indispensable is the ability to earn income.
The absence of money is the root of all evil I have become convinced.
For the elderly and disabled, the cost of vitality is beyond the means of our savings or health care plans. Most significantly, Medicare does not pay dental costs. Our hospital emergency rooms (Mount Nittany Medical Center included) are filled with patients experiencing uncontrolled pain as a consequence of being unable to see a dentist.
Inadequate dental clinics for the poor (including the one in State College area) are incapable of providing even basic care. Private dental care is expensive. A resident in an independent living facility must earn extra income or face the loss of independence—not only dental but other costs of maintenance.
Hence, the house I would like to renovate contains office space. Here in central Pennsylvania high-speed Internet service may be difficult to come by. Without adequate Internet service, public transportation, and other amenities, the first rule for renovating a house when one becomes disabled must be: Move.
D. Independent living: Encouragement
Only recently did the last ingredient missing from my work to date appear.
It is not enough merely to avoid falls, incontinence, infection, and other sorrows. There must be a positive reason for living–something that lifts us—most especially the disabled—from the difficulties of day-to-day.
For some it is spirituality for others music and art. Whatever, the problem academically is incorporating that perspective appropriately.
Fortunately, a friend brought to my attention this peer review article. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2804629/
Primary author Heather Stuckey (a Penn State medical researcher) begins with a United Nations definition of wellness that is critical. Her observations regarding the role of music and art to help avoid sickness and malaise is critical. I will be writing Heather Stuckey shortly for advice on incorporating her findings into the PHRC technical paper.
Also in this category accentuating the positive is love including physical.
“Cancer and its treatments can have an impact on your sexual health, whether you are a man or a woman. These changes can affect people physically and emotionally, decreasing interest in sexual activity as well as self-confidence.
“To help you take action and address sexual health issues related to cancer, Memorial Sloan Kettering offers personalized, multidisciplinary support services and therapies for men and women. Our team of doctors, nurses, social workers, and psychologists is experienced in treating the specific sexual health concerns triggered by cancer and its treatments.”
“Sexual health is important at any age. And the desire for intimacy is timeless. While sex may not be the same as it was in your 20s, it can still be very fulfilling. Discover which aspects of sexual health are likely to change as you age — and how you and your partner can adapt.”
Related photographs and videos at first posted here prior to order being established
III. Academically respectable guidance
IV. Designing a Home for Mobility Independence
Who is in charge of the design?
Kitchen design based on activities of daily living
[Appreciation to Dr. Sonali Kumar, who provided coffee.]
“A usagenarrative, or just narrative, is a concrete scenario that reveals the motivations and intentions of various actors. It is used as a warm-up activity to reading or writing use cases.
“In requirements writing, scenarios are sometimes written using placeholder terms like ‘customer’ and ‘address’ for actors and data values. When it is necessary that these be distinguished from concrete scenarios, they can be called general scenarios.”
This is a photograph of the house where I lived when I lost the ability to walk.
The year was 1995. I was 48 years old. I lived with my wife and two daughters–Joanna age 9 and Amelia age 4– in Durham, N.C. I was working as a technical writer for Northern Telecom. Northern Telecom manufactured large telephone switches. My job was to explain to companies how to operate sophisticated software located on a switch.
Across the road from my office (at nearby Research Triangle Park) was a research facility encircled by a jogging track. I regularly jogged on the track. During a six-week period in 1995, I went from being able to jog on the track to being unable to walk at all. Indeed I became unable to stand without holding or leaning on to an object such as a wall, a desk, a chair, a bed….
During this period when my mobility was getting rapidly worse, I spent a lot of time going from doctor to doctor to find out what was wrong. My insurance required I begin the quest at my primary care physician’s office. My physician referred me to a neurologist for tests. The neurologist referred me to the Neurological Clinic at Duke University. The head of the clinic suggested I speak to an oncologist.
I had been treated with high doses of radiation administered by a linear accelerator. Radiation was the treatment recommended because I had been diagnosed as having Hodgkin’s disease, a cancer of the lymphatic system. I was treated in 1976. When a tumor reappeared in 1989, I was treated with radiation again. I was surprised to discover my mobility problem was a consequence of radiation treatment. My radiologist in 1989 told me before beginning treatment the likely side effects. However, paraplegia was not one of the side effects listed. Nor, had my primary care physician associated my mobility problem with my cancer treatment.
The head of the oncology clinic at the University of North Carolina at Chapel Hill determined my mobility problems were a consequence of radiation burning my spine. The oncologist compared the radiation burn to that of a small fire getting larger. At some point; namely, 1995, he explained, the fire had become sufficiently large as to destroy my mobility.
The oncologist prescribed large doses of a steroid drug. He said the drug probably would not work. However, “You have nothing to lose by trying.” The steroids did not work. In fact, the drug had considerable nasty side effects. It was during the period that I was on steroids that I fell in my house and dislocated my right shoulder.
I am co-authoring a technical report entitled, “Renovating existing housing to provide residents with mobility disabilities the opportunity to live independently.” When completed, the report will be published as a technical paper on the website of the Pennsylvania Housing Research Center.
For purposes of comparison, an already published report is entitled, “Impact of Building Codes on Exterior Plaster Assemblies in Pennsylvania.” If you have time, take a look:
Even a cursory glance makes clear this report follows the rules for academic publications. Citations are required for statements of fact. The appropriate generic style manual regarding how to make citations is the Publication Manual of the American Psychological Association (APA). The APA style manual is the one most helpful to faculty, postgraduates, and graduate students at Penn State’s Department of Architectural Engineering . The APA manual is (easily modified to comply with the modest variations contained in engineering manuals especially when using Zotero) for such academic publications as:
While planning the PHRC report, I asked Dr. Ali Memari, Director of the Pennsylvania Research Center and my co-author, the rules for citing my observations on renovation strategy and priorities based on my 21 years experience as a paraplegic.
Specifically, after re-reading a portion of the report I had written, I realized statements of fact required citation. Given “fact” (as I used it) was based on my knowledge and experience, I was concerned academic scholarship required an authority to confirm it.
Dr. Memari replied no citation is required because I am an expert. Of course, “Renovating existing housing to provide residents with mobility disabilities the opportunity to live independently” does require citations regarding matters of fact NOT based on my expertise.
I have been incorporating citations from such sources as:
The more I looked at the citations I am incorporating, the more I realized that it could be useful to cite myself. In the past 21 years since I became a paraplegic, I have been published widely on the subject of renovating housing for the disabled and elderly.
Here are three examples:
For e-architect.co. UK, a website receiving nearly one million hits a day from the global building community see: “Zaha Hadid’s Miami compared to my life in rural “Rust Belt” Pennsylvania.” This is one of the columns I have been publishing on disability issues for the past four years. In the discussion of “Rust Belt” PA, I discuss Blueroof Technology’s research cottage in McKeesport. At Blueroof, Penn State Engineering Professor Robert Walters designed housing for low-income disabled residents. He inserted sensors at factory-constructed housing which instantly notify caregivers if a resident falls in the shower
For the publication of the home medical equipment industry, see HME News: “Put on your 3-D glasses.” The article discusses Dr. John Messner’s Immersive Construction (ICon)Lab at Penn State. The emphasis is on designing health-related projects, including the ability to transform existing housing so it is accessible to the mobility disabled.
Regarding “Renovating existing housing to provide residents with mobility disabilities the opportunity to live independently” the report explains that the ideal client for the architect, general contractor, or specialized subcontractor (e.g., the person installing the ramp to enter and exit the residence) is the person who has become disabled. Ideally, she or he should be directing the architect or general contractor or other provider of renovation.
Academic publications describe a house renovated by the person residing in it as “experienced-based design.” Individual preferences do matter. For example, my kitchen does not have any cabinet doors. Anyone entering my kitchen can see at a glance I have several cans of tomato soup. I do not care if you know I have tomato soup. Some people do care. This may not seem a significant design concern. However even seemingly insignificant concerns can matter.
When I became a paraplegic suddenly without warning, I was too overwhelmed to make design decisions. Also, my physicians had prescribed medication that impaired my judgement. In essence, my caregivers were making design decisions while I was otherwise distracted. Design decisions [even no action is a design decision] are most productive when made by a caregiver who has my preferences in mind when telling the architect how to proceed.
Today’s post begins a series designed to document my expertise as a paraplegic. My intention is to provide supplemental (and presumably helpful) detail to readers of the PHRC report I am co-authoring . There are a variety of instances where explaining how I developed my expertise can be useful. Today, I think it useful to describe my state of mind which led to my dislocating my shoulder.
I plan future posts targeted to the report to provide supplemental information on such subjects as:
The telecommunications concept of “transparency” as it relates to disability access. Accessibility is most effective when access is so designed that the person with a disability is not continually reminded that he or she is disabled. The chapter on getting to the second floor presents this concept most clearly. Getting into an elevator or a lift is far preferable than taking a stair lift. A stair lift requires one transfer from a mobility device to stair lift. Then, at the top of the stairs, for mobility, transfer to another mobility device is required. Worthy of note is in the past 10 years, elevators have become considerably less expensive. At the same time, manufacturers have developed technology to make it easier to install an elevator throughout a residence, rather than require it be attached to a shaft.
The Focus is on experience-based design
I devote considerable space in this post on the consequences of falling the importance of its prevention. Yet, the focus here is on who should be instructing the architect et al. In my case, the unexpected and overwhelming catastrophe that resulted in my becoming a paraplegic made me incapable of dealing with an architect, general contractor, or other specialist. Ideally, since I would have benefited, my inability to act on my behalf was unfortunate. My daughters were too young. My wife understandably was overwhelmed. At question was not merely guard rails in the shower, for example. At question was whether I would be able to work to pay the mortgage, to hold on to the house, to support our children. Catastrophe it certainly was.
Twenty-one years later, I look back at the situation and realize that there were indeed caregivers willing to help if only we knew how to ask. Caregivers are in the difficult situation of trying to understand how to offer help. Families are similarly in the difficult situation of knowing how to accept help. The PHRC report I am co-authoring will provide advice to caregivers and families. Fortunately the report will benefit from my experience when one caregiver did emerge who was instrumental in my getting beyond the role of victim.
On December 12, 2006, I described the experience of dislocating my shoulder for WPSU radio.
For most of my life, my toes worked perfectly well. Then, around the age of 48, they gave up their natural function. I went from “occasional jogger” to someone who could not walk across a room. Eventually, my doctors figured out why. I had been treated for cancer, and the radiation had destroyed nerves in my spine.
On a winter day in 1995, fueled by enthusiasm for a brilliant biography of Martin Luther King, Jr., I just HAD to read a passage to my wife. I dashed from the bedroom toward the kitchen—forgetting that my dashing days were over. My toes curled under my right foot and I fell and rolled, dislocating my shoulder. The pain was rapid and intense.
That was at my house at Durham, North Carolina. Now, some 12 years later, I am at Penn State as a graduate student in Rehabilitation Counseling. In the interim, I have come to preach the gospel of assistive technology. This is technology that would have prevented me from dislocating my shoulder.
Here in the graduate dormitories on the western frontier of the Penn State campus, I can drive my scooter out of my apartment and through the front doors of the apartment complex (which have an electric key providing both access and security). I can cross the bridge over Atherton, a busy street, go to the library and then to the grocery store on Allen Street where I fill my book bag with groceries. I can do all this, and I can go 25 miles before I have to recharge my scooter.
Since my disability began, I have never had this kind of accessibility that Penn State makes possible. Twelve years ago, if I had had equivalent access for an environment with dangerous roads and few sidewalks; namely, if I had
a ramp for my house
a wheel chair lift for my car
maybe I would have been able to work productively. Instead, my energy levels and my jobs seemed to fizzle out at the same time.
In the 12 years since my disability began, the three following positive factors have combined to increase opportunity and dignity for the physically disabled:
Greater availability of assistive technology
Improved environmental design
More effective enforcement and compliance with the Americans with Disability Act (ADA), which, among other things [i.e. The Rehabilitation Act of 1973] provides the standards for the ramps, street cuts, and sidewalks I use when I scoot around Penn State
When I receive my degree, I am scheduled to work as a counselor for the Office of Vocational Rehabilitation (OVR). At OVR, I will be finding jobs for the mobility, visual, and hearing disabled and for those with other disabilities. For technology to be effective, its use must be combined with the proper environment.
My job training as an OVR counselor begins here at Penn State. A high priority for me is to help the Office of Physical Plant make Penn State’s travel routes for wheelchairs, powerchairs, and scooters safer and easier to use. Just because access at Penn State is good does not mean that it is good enough. Unfortunately, I can cite too many instances where sidewalks end without warning (with a sharp drop for stairs), where there is an absence of helpful signs at entranceways, where street cuts are impassable because the cement is so high or so badly poured.
January 17, 2017 is an appropriate date to announce the engagement of Amelia Altalena Solkoff to Javier Blanco.
The date marks the 1925 birthday of Amelia’s late paternal grandmother Miriam Pell Schmerler zt”l who was close to Amelia and her sister Joanna.
Amelia teaches English in Pontevedra, Spain (on the Portuguese border) where she is also an enthusiastic member of the local roller derby and rugby teams. With the exception of brief visits to the United States, Amelia has lived in Spain for three years, previously residing in Pamplona as well as spending a summer working on farms in the Basque region and the Canary Islands.
Javier Blanco is a sergeant in the Spanish army. The couple met in Javier’s hometown of Pontevedra where his mother and brother reside. Javier and Amelia currently live in Toledo.
The couple plan to marry in Pontevedra or nearby during the summer of 2016. The closest airport is Vigo, the fastest growing town in Spain. [Editorial note: Plans schmans. The couple married in Chapel Hill, North Carolina on August 6th. They honeymooned in Jamaica.]
Extensive additions, revisions, and amplification of Amelia and Javier’s engagement and marriage will appear on this site. Suffice it to say Amelia’s mother Diana Bass, sister Joanna, Joanna’s husband Jade and I are delighted.
I was present at the birth of both my daughters. I watched them grow up, receive an education, become employed and generally suck up a large portion of my energy (a process which continues to this day). Watching my daughters marry (when images of their birth continually flash through my mind) is a startling reality.
Especially mystifying to me are my daughters’ attraction to military men, each of whom I approve.
My primary hero is Dr. Martin Luther King, Jr. whose practice of non-violent resistance I have held up as an example to my daughters. I received conscientious objector status from my draft board during the Vietnam War which was an evil war. Perhaps, I have a recessive military gene. Go figure.
Javier plans to obtain a library card before getting married.
Dr. Jeniffer Simon, a caring and experienced urologist, Geissinger Medical Center, State College PA showed me on her computer this image–a cancerous tumor surrounding my right kidney, referring me to Memorial Sloan Kettering Cancer Center in New York City. “Unless you have surgery quickly, you will be dead in 10 years.” The date: April 5, 2013, 4 P.M. We hugged; I cried.
The order of this posting (typically presented in a hodgepodge of disorder):
Paraplegia and the recollection of previous cancers
The last part of cancer therapy
This I believe
Make haste slowlyis the motto.
I first came across this seemingly contradictory expression when trying to learn Latin:Festina lente.
Unless one is in a situation such as mine, Make haste slowly appears to make no sense.
Speed and slow are opposites.
The last part of cancer therapy
My situation comes at the end of a difficult time.
The time began in April when I was diagnosed with kidney cancer and reached medical optimism after I left my home in State College, PA where the expertise to save my life did not exist.
I was referred to Memorial Sloan Kettering Cancer Center in New York City—a five hour car ride away. On August 8th, Dr. Paul Russo removed the cancerous tumor, saved my right kidney, and essentially prevented me from dying of kidney cancer. It was a gift of 10 years.
In The Canary Murder Case by S.S. Van Dine, Philo Vance—almost certainly the most obnoxious snob in the history of detective literature—is helping his friend the district attorney solve a difficult murder. The district attorney says, “’Well, well! So the case is settled! Now if you’ll but indicate which is the guilty one, I’ll arrest him at once, and return to my other duties.’”
“’You’re always in such haste,’ Vance lamented. “Why leap and run? The wisdom of the world’s philosophers is against it. Festina lente, says Caesar; or, as Rufus has it, Festinatio tarde est. And the Koran says quite frankly that haste is of the Devil. Shakespeare was constantly lamenting speed. ‘He tires that spurs too fast betimes.’”
Vance, whose name in 1927 became synonymous with private detective, goes on to quote Moliere, Chaucer and the Bible on the subject.
My energy level is sufficiently low and my acuity high enough I understand Vance’s point without citing the additional paragraph.
For the past 20 years, I have been a paraplegic unable even slowly “to leap and run.” Paradoxically, in high school I received a letter sweater for running 2 ½ miles regularly during cross-country competitions. My best record was clocked running two miles in less than 12 minutes, hardly the Olympics, but good enough for Cheltenham High School in Wyncotte, PA.
Yes, I would like to leap and run. There are a lot of things I would like to do that I cannot.
What I want to do is live life to the full and in the process make a contribution along the path I have committed myself.
I certainly have done a lot of living in the past 20 years as a paraplegic. In one of my three trips across the United States from sea to shining sea, I took my battery-powered scooter and drove it around the rim of the Grand Canyon.
In California, I watched my elder daughter Joanna train a horse to jump a fence. As I watched, the horse did something amazing. After going over the fence for the first time, the horse did a double-take, shaking its head as if to say, “I do not believe I did that.” Joanna’s smile of accomplishment…
In Santa Cruz, one glorious day, Amelia my younger daughter and I boarded a ship and watched whales frolicking.
For a while, I chose the Isadora Duncan School of Dance rather than rehabilitation–both dance and physical rehabilitation have become an essential part of my doxology.
In the Silicon Valley, I wrote a technical manual for KLA-Tancor on inspecting silicon wafers for defects. Often, I scrubbed down, putting on a white gown and hat; wheeling into the clean room where my readers would be using the documentation.
The recollection of previous cancers
After radiation treatment for cancer, I fathered my two children, published three books, and loved and was loved in return.
The experience of having cancer twice, first at age 28 then at 42—treatment which burned my spine and made me unable to walk certainly slowed me down. It did not stop me. Nor has the experience of having cancer for the third time at age 65 stopped me.
“The Roman historian Suetonius… tells that Augustus… thought nothing less becoming in a well-trained leader than haste and rashness, and, accordingly, favorite sayings of his were: ‘More haste, less speed’; ‘Better a safe commander than a bold’; and ‘That is done quickly enough which is done well enough.'”
Wikipedia continues, “Gold coins were minted for Augustus which bore the image of a crab and a butterfly, which was considered to be emblematic of the adage. Other pairings used to illustrate the adage include a hare in a snail shell; a chameleon with a fish; a diamond ring entwined with foliage; and, especially, a dolphin entwined around an anchor. Cosimo I de’ Medici, Grand Duke of Tuscany had festina lente as his motto and illustrated it with a tortoise with a sail upon its back.”
Frequently, I suspect I have not learned from experience.
The same mistakes seem to repeat themselves in predictable order. This is most often the case with loss of energy. So often have I felt my body filled with power and enthusiasm that when the power disappears and getting out of bed becomes a chore, a dark cloud seems to hang over me.
The cloud is not there now.
Recovery from surgery has surprised me by its slow pace.
When I returned from New York in August, the combination of weakness and pain made me grateful to be alone.
One consequence of my receiving a cancer diagnosis in April of this year is that the telling provoked waves of affection and attention not merely from those close to home.
A woman whom I had loved intensely in 1972 ( not seen or heard from since) read here on this site an optimistic account of my situation and responded with an e-mail followed by phone calls. We talked about the children we did not have together, the life we did not share, and the strangely odd and encouraging fact that affection untended continues despite the reality that it had its origins so long ago.
Friends appeared with whom I had lost contact for decades. My expectations of how good people could be to me were vastly exceeded by reality. I have emerged from surgery with the feeling of being cherished. Nothing I can say or do can ever repay my gratitude. You know who you are and yet you do not truly appreciate how much you have graced my heart.
Often I feel words used to describe me are wrong, just wrong. I do not think of myself as “brave” or “courageous” or a “fighter.” When I think of myself, which I do often, I try to stop—meditate and in my own fashion pray that the ego will dissolve and I will just continue, pursue the path.
Late in August, back at my apartment, alone, feeling that strange happiness that comes when intense pain disappears, whoever I am is comfortable to me. By nature I am impatient. By nature, I am persistent. Then, the phrase make haste slowly serves as a comfort. I will do what I need to do when the time comes. I will be grateful for energy and understanding when I cannot do what needs to be done. If the sky falls and I do not have the strength to stop it, the sky falls. Such is life.
Going to Joanna’s wedding in October appears now on the second day of December a miraculous event. Weeks before I boarded the plane, I did not believe the energy would return. I persisted. Giving away my elder daughter on a farm in Mebane, North Carolina produced euphoria that brought me through and carried me home on Delta Airlines.
At the wedding it was a delight seeing Amelia again in North Carolina a seeming aeon away from New York , saying goodbye before she returned to Spain for her third extended trip.
Watching my sister Sarah Leah Schmerler dance without inhibition after the intensity of being together at the hospital in New York
Revisiting my 12 year-old only nephew Asher Simonson with his unexpected moments of humor
Seeing his father Robert Simonson who had lugged my mobility devices around the Island of Manhattan
My son-in-law Jade Phillips and his firefighting colleagues who, when the festivities were over and the bonfire burned out, literally picked up my exhausted body and flung me into the passenger side of a truck
Then fatigue. Delight in being alone. Concern I would not finish the work I must finish. Optional isolation. Appearing outside my apartment only occasionally. Seeing as few people as possible. Avoiding crowds, large gatherings, and familiar places where I have been surrounded by affection.
Periodically, I receive calls, visits, e-mails and reports of those who ask with affection and concern “Where’s Joel?”
A dear friend becomes sick. Miles and often even a few blocks I do not have the energy to travel keep me from being where I would otherwise like to be.
I sit in my apartment and wait. A rush of energy and I find myself writing, as I am writing now, without stop, expressing while leaving dishes unwashed, my bed unmade, not yet able to complete rigorous academic writing—not quite able to pull together a large project.
Instead, I follow whim. I have been making You Tube videos—going off to a computer in the patient company of an expert in iMovie editing software, collapsing, returning, making slow steady progress as bills pile up, consistently refusing to think about the money I do not have and the energy I do not have to obtain it.
I have been reading Robert Alter’s The Book of Psalms, his introduction tracing the psalms’ origins back to the Bronze Age over 3,000 years ago, reciting his clear translation, going to the Hebrew, recalling my mother never left the house without a small Hebrew copy of Psalms in her pocketbook, dipping into David Halberstam writing about Elvis Presley, reading a paragraph here and there about architecture, engineering, virtual reality—not doing much for long, but doing and then in fatigue watching by choice vapid Netflix videos for hours.
The last part of cancer therapy
I hope to encourage others like me who are recovering to recognize our temporary limitations and persevere.
Most do not recognize the difficulties involved in recovering from cancer after the disease is gone but the energy has not returned.
While researching, I came across a footnote in a medical journal article. A young man with the most dangerous stage of Hodgkin’s disease had killed himself after being cured. The autopsy revealed no cancer was present in his body.
Surviving while still recovering can be a hard time unless one is willing to believe in the future. Henry David Thoreau should be an encouragement to those us living in situations such as the one I am now in. Thoreau wrote, “There is one consolation in being sick; and that is the possibility that you may recover to a better state than you were ever in before.”
My life seems to have been lived on the principle that best way to get from here to there is NOT to go in a straight line.
I have been watching You Tubes of Edward R. Murrow, my hero. This one caught my fancy yesterday at 2 in the morning.
This I believe
I am alive for a purpose.
The attempt to achieve the purpose, which I choose to call my path in homage to Laozi, serves not only its own end but to unite all that is sacred to me; namely, my children (of course) who are adults and have lives of their own; my sister Sarah and my family, my friends who are family; my love for women (a woman were the right woman in my bed); the need to care for myself, be independent in body and mind, be a good citizen who embraces not only my country but my mother Earth, and the need to be the human being I strive to be who believes in the spirit that gives us life.
3. My chosen path is to help the elderly and disabled achieve their potential.
4. Along that path is the virtue of technology which makes it possible for me to go seamlessly from my bed to my kitchen out the door and into the world on scooters like the kind that my dear friend Al Thieme of Amigo Mobility invented which he refers to as Power Operated Vehicle scooters or POV scooters to distinguish them from toys. The technology mobility path includes power chairs and equipment being developed at an astonishingly rapid pace. The consequence of this technology is I do not think of myself as one whose disability prevents me from living life to the full. For individuals with hearing and visual disabilities technology has developed to the point where, for example, an individual blind from birth can drive an automobile specially equipped with laser scanning of the road; the automobile provides the driver computer-voice simulated operated instructions.
Totally blind drivers have passed tests on intentionally difficult driving courses. I believe in my lifetime the Commonwealth of Pennsylvania will issue drivers licenses to individuals who are totally blind but who have proven their ability to drive sophisticated vehicles such as the ones already produced by the Virginia Tech’s Robotics and Mechanisms Laboratory.
5. My path is focused on what the architectural, engineering, and construction community refer to as the built environment. See, for example, my biographical information and published work for e-architect: http://www.e-architect.co.uk/editors/joel-solkoff
6. To rebuild the environment, the promise of virtual reality is real. Virtual reality is a promise my 30 year-old mentor Sonali Kumar introduced to me as I worked with her as a research assistant at Penn State’s Architectural Engineering Department to complete her doctoral dissertation entitled: Experience-based design review of healthcare facilities using interactive virtual prototypes.
Sonali apologized when she used me as the model for this avatar. “I am sorry I put so much gray in your hair. You do have a lot of gray in your hair.”
Fashion aside, one of my contributions to Sonali’s animated three-dimensional model of an independent-living-aging-in-place home was the suggestion she replace the original bathtub with a roll in shower. As a paraplegic for whom being clean is vital, I have all too often been trapped in a bathtub–on one occasion it took me 45 minutes to figure out how to get out of the tub finally using my arms to push me out, pulling my legs after me as I landed onto a dirty bathroom floor.
7. Experienced-based design is essential. Experienced-based design is one of a number of academic terms meaning the best way to design an environment is to ask the person who will use it. The example that comes most readily to mind is an article I read about a new hospital in the Philadelphia area. The article complemented the hospital administration for asking patients at the previous facility what changes they would suggest making to the design of the new building to make the hospital more patient-friendly. The patients suggested making it easier to get from bed to bathroom by making the bathroom closer to the bed. The article praised the administration for the reduction in falls as a consequence. [I know. My instant reaction to that was Daaaaaaaaaaaahh.] Asking does matter. Ask experts like me, for example, or my neighbors at Addison Court (an independent living apartment building for the elderly and disabled) whom I arranged to view Sonali’s model wearing 3-D glasses at Dr. John Messner’s Immersive Construction Lab for Construction industry. The consequence is we have the experience to instruct the design of the environment around us so that it is more efficient. The result is not merely an exercise in odd-sounding academic words such as case studies, scenarios, and activities of daily living (ADL); it is also a good idea.
8. Self reliance should be encouraged. Shown here
[Note: Think of I believe in points 8, 9, and beyond as Coming Attractions.]
Getting out of bed (and eventually into an automobile)
To travel the 257 miles from State College, PA to Memorial Sloan Kettering Cancer Center (known to New Yorkers as Memorial) less than two blocks from the East River in New York City, I have to get out of bed.
What follows is a photographic recreation of my getting out of bed on June first, for my most recent expedition to Memorial where I went for tests and more tests and the surprising news that Dr. Paul Russo had decided an operation would be a good idea.
The decision was a surprise because it was in effect a reversal of his position in April. The reversal can be explained, I suppose, because in June Dr. Russo had the opportunity to review extremely detailed sonic imaging of my kidney and heart:
The kidneys to see whether he could remove the tumor and save two-thirds of the kidney and not incidentally remove the threat that I will die of kidney cancer
The heart to determine whether I would survive the operation and recover
Keep in mind: Cure the cancer; kill the patient is not a good idea
Here I am in bed.
Because I am a paraplegic, getting out of bed requires some effort. Paraplegic, the dictionary explains, is an individual who has “paralysis of the lower half of the body with involvement of both legs.”
I cannot stand without holding on to something. That does not mean I cannot dance, if I am careful and have a partner who understands, I CAN dance.
I cannot walk, but there are a wide variety of devices that can help me get from here to there.
Plus, my feet work well enough that I can drive a car.
To get out of bed, I need to transfer to a mobility device.
The following photograph shows me transferring from the bed to a scooter. First invented in 1968 by my friend Al Thieme, CEO of Amigo Mobility, the device is formally called a Power Operated Vehicle (POV) scooter.
Photograph by Benjamin Carlsen
In the following photograph, the transfer is complete and I am now ready to:
drive to the bathroom
the kitchen to make breakfast
to various parts of my apartment to get dressed and pack for the trip to New York
It is essential to keep the battery charger in mind at all times and to make sure it is positioned in the right place. Before going to sleep, have a plugged in battery charger with a fan inside sitting on the bed table preparing for the period after sleep. Hearing the hum of the fan reassures that the charger plugged in next to my bed will provide me in the morning 25 miles worth of power–25 miles (to repeat) for one full charge.
Finally, after considerable effort and stops for this and that (including, of course, getting lost), here is a photograph I took of myself driving a mini-van through the streets of New York City in June—the scooter having been taken apart and put in the rear. As one born and college educated in New York, I like the thrill of driving in insane cross-town traffic where there are no rules of the road except aggression. This is what it is like to be en route to appointments to test my kidney and heart and to learn of the operation I had not anticipated.
Today is Monday, July 8th. I am in State College planning the logistics of getting to New York for the operation in August at a hospital in New York City where the word MEMORIAL is chiseled ghoulishly in large stone letters above the entrance.
Now I am planning and planning– wondering which of my disability devices to take with me. I am planning on how to position my mobility devices in New York so they are there when I need them:
before the surgeon cuts
in the hospital immediately after the operation
wherever I will be staying in New York for the two-week recovery period
Fashion note: The beautiful 100% cotton yellow pajamas I am wearing in bed are part of a generous sartorial gift from the family of the late David Forer, a man of impeccable taste.
In 30 days (the actual date is Thursday, August 8th), I am scheduled for major surgery at Memorial Sloan Kettering Cancer Center (MSKCC). The surgery will be performed by an expert in the field of kidney surgery which my physician here in State College (250 miles from New York City) advises me cannot be reliably perfumed in the greater region where I live. My State College urologist referred me to Sloan Kettering in New York where Dr. Paul Russo will perform the surgery. The surgery, if successful. and it is highly likely to be, will remove the large tumor that surrounds my right kidney. The surgery will also remove one-third of my right kidney–in effect saving the kidney. Since imaging indicates the cancer has not spread, the operation is likely to eliminate the threat of my dying of kidney disease. Period. That is a big load off my mind. I hope you are able to donate money to help defray the travel expenses to surgery and during the two-week estimated recovery period.and of course the journey back home. My estimate is that $3,000 would be amount required and when I achieve that amount I will tell you and take down the donation button. Begging for money is difficult enough. Begging for money after I have raised the requested amount is tasteless.
At the CVS Pharmacy on Beaver Avenue in downtown State College, PA, I purchased a container of apricots on which the following is written:
“Found in the beautiful lands between the Mediterranean and Black Seas, we handpick Apricots that are bursting with amazing fruit flavor. Each of our select Amrita Apricots comes from these ideal conditions that create a delicious, sweet flavor like no other.”
“A journey esp. when undertaken to escape from a dangerous or undesirable situation.”
How else to feel other than I am, often thinking Flash Gordon soap– O how terrible it must be for a young man seated before a family and the family thinking We never saw him before! He wants our Mary Lou! After tea and homemade cookies they ask What do you do for a living? Should I tell them? Would they like me then? Say All right get married, we’re losing a daughter but we’re gaining a son– And should I then ask Where’s the bathroom?
The Event has concluded, but the Party is not over.
It is 6:06 in the morning.
I am back at my apartment in State College PA after the return from the Blessed Event at the patio of the elegant Weathervane Restaurant in Chapel Hill and spending time with Joanna, Amelia and Jade [a lot of time with Joanna Amelia and Jade] and with David Hiscoe, my former boss at Northern Telecom where I worked at Research Triangle Park for four years as a senior technical writer.
[I have never been a junior technical writer or a simple run-of-the-mill technical writer; there is grade inflation in the technical writer world where however young and inexperienced, I have always been a Senior Technical writer.]
Of course, there is the description of THE PARTY.
I will not even pretend to be comprehensive here. I am tired now and my typos are increasing at an astonishing pace.
Relax, dear reader, I will describe the party where Joanna invited her neighbors and friends and Jade imported Brandon, his stepson who is attending Guilford College in a beautiful location outside Greensboro near where my mother was very happy to live.
I will note that the proprietor of the equestrian center where Joanna and Jade plan to marry attended.
Pat and I discussed Joanna‘s plan to have George, Joanna‘s beloved horse, attend as a guest of honor.
Much as she would like to, Joanna cannot ride George because he is old and frail.
Joanna plans to ride side-saddle on Scarlet, the only horse ever to have thrown Joanna. Pat and I discussed the relative merits of each horse participant in Joanna and Jade’s wedding.
The Party and Wedding details have caused my dear muscle-bound future son-in-law to roll his eyes dramatically.
[Note: Joanna has asserted the right to censor anything I write or any photograph I post and any thought I have in my mind regardless of subject. I have denied her the right to delete photos from my iPhone the instant after they are taken or remove photos from my computer. But this copy will change without notice. You can depend on that.]
This is the ramp the wonderful ground crew of United Airlines constructed and assembled for me and me alone to board the flight to Dulles airport, similar to the ramp used at Dulles Airport to get to RDU [Raleigh DUrham International Airport].
The following is a JMS-approved photograph of the happy couple.
Jade, of course, is wearing his Tom Selleck imitation costume, but that is a story for another time, like the buying shoes story.
Jade Phillips and my only elder daughter pre-celebrate their Engagement Party on September 29th.
More to come.
As an aside….
I am trying not to repeat:
I hate United Airlines
I hate United Airlines
I hate United Airlines
I keep trying to figure out a way to get even with United Airlines for the shabby way the company treated me.
I would serve to make United responsive to disabled individuals, especially disabled-veterans, the elderly, and Baby Boomers whose market demands will bankrupt United Airlines if it does not get its act together.
Thank you dear readers for your donations. Those of you who did not give relax. I got there and back, didn’t I. Let us celebrate.
The night before I left to return to State College, Joanna came over to my hotel room where Amelia and I cooked eggplant.
Amelia Altalena, Joanna’s younger sister, was appointed Maid of Honor on Saturday night.
Amelia will be flying to London on October 18th to work as an English teacher in rural Spain. Amelia’s impending departure is the reason Joanna rushed up the ceremony. With Amelia it is easy to say here today off tomorrow for who knows where. Whooooooooooosssssssssssssssssssssss.
Joanna had worked from 5:30 in the morning to 7 PM giving pain medication to hip replacement recovery patients who were not pleased with the amount of pain they were experiencing.
Joanna just collapsed on arrival to my room.
Amelia and I shoooooooooooowwwwwwwwwwwwwwwwwed her out of the room and into the car and home to bed before Joanna had to wake up at 5:30 the next morning for another grueling round.