Challenges a Mobility-Disabled Resident Encounters Renovating for Independent Living

Figure 1. “Middletown, A Study in Modern American Culture” (published in 1929) is the first of a series of studies on the inter-relationship of basic human requirements so a selected community can function in a healthy manner.

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. [2]

“Middletown” is widely regarded in academia as a classic example of sociology as a science (in the tradition of Émile Durkheim. [3] 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.

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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 and irreducible 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 sociological terms, 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, which focuses 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. [4]

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Summary

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:

  1. 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.

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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.

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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)?

Figure 2. This device sends a beam to the resident of the house who is taking a shower. Were she or he to fall, the beam would detect (or fail to detect) the presence of someone taking a shower. An alarm (silent or otherwise) would sound. The house (anthropomorphized) would automatically dial 911 and a simulated voice message would tell emergency services that help is required.

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).

Figure 3. This is an all too frequent view from my apartment window.

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.

Figure 4. This photograph of Terry Stuart is by Greg Brown, who owns the copyright. Published with his permission.”

 

 

 

 

 

 

 

 

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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.”

Figure 5. Lilian Hutchinson was my neighbor and friend for over eight years. She is shown here shortly before her 90th birthday. The cast is from a fall she took in her kitchen.

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.

Organization

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.”

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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.
--Middletown

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.

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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.

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Figure 6. In my 20 years as a paraplegic, the most appropriate housing within an accessible neighborhood was San Jose, California. [Note my appreciation of the Financial Times, which may very well be the best English-language newspaper in the world Additional copyright information forthcoming.]
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This is the source for my income.

 

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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.

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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.

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This is the house in which I lived when I lost the ability to walk in 1995.

 

This is the house where I lived when I lost the ability to walk in 1994.


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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.
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Training the young.

 

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Using leisure in various forms of play, art, and so on.

Note: “So on” is a euphemism for sex.

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Engaging in religious practices.

Psalm 146King James Version (KJV)

146 Praise ye the Lord. Praise the Lord, O my soul.

While I live will I praise the Lord: I will sing praises unto my God while I have any being.

Put not your trust in princes, nor in the son of man, in whom there is no help.

His breath goeth forth, he returneth to his earth; in that very day his thoughts perish.

Happy is he that hath the God of Jacob for his help, whose hope is in the Lord his God:

Which made heaven, and earth, the sea, and all that therein is: which keepeth truth for ever:

Which executeth judgment for the oppressed: which giveth food to the hungry. The Lord looseth the prisoners:

The Lord openeth the eyes of the blind: the Lord raiseth them that are bowed down: the Lord loveth the righteous:

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.

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Engaging in community activities.”

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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.

  1. In 2010, the U.S. Department of Census estimated there were 35 million Americans aged 65 and older.
  2. 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.
  3. 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.
  4. 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

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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.

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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.

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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.

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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.

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Two Useful Concepts

Two concepts are requisite for designing a home in which a resident with a physical disability can live independently.

Experienced-based design

  1. 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.

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“Evidence-based design, which bases design decisions on the best available current research evidence, is gaining traction among architects. Expanding the field from its origins in healthcare to other building types such as education, criminal justice, commercial, industrial, and places of worship, this book introduces design professionals to the concept of evidence-based design and its use in the creation of high performance environments. It focuses on the methods by which design professionals and their clients can create better buildings by critically interpreting the implications of credible research and careful observation of completed projects. Drawing a direct link between evidence and application, the authors provide examples of credible research that supports evidence-based design are presented, as well as specific applications and case study examples.”
–Christine McEntee, Executive Vice President/Chief Executive Officer, The American Institute of Architects

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2. Medical brain research and aging. Recent medical research indicates that medical acuity can continue to be productive despite traditional and mythological theories relating to the disabled and attributing senility in the aging process. Dr. Norman Doidge has popularized the research in The Brain’s Way of Healing and other work. Dr. Doidge asserts that for the disabled and the elderly the keys to keeping one’s brain alert are a combination of physical exercise and learning new subjects (as opposed to such practice as “coasting” on what one has learned.

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Demographics

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.”

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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.

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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:

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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?

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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:

http://www.phrc.psu.edu/Publications/PHRC-Technical-Publications/index.aspx

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Key question

At what point does an independent living house become a realistic expenditure of resources or not?

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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
• Incontinence
• 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?
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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.”

https://www.mskcc.org/cancer-care/treatments/symptom-management/sexual-health-fertility/health

“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.”

http://www.mayoclinic.org/healthy-lifestyle/sexual-health/in-depth/sexual-health/art-20046698

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II. Overview: Wheel-chair Access in the U.S.

 

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Interlude

Related photographs and videos at first posted here prior to order being established

 

On Tuesday, July 12, 2015, Leyla Skeylar, my physical therapist, took this photograph of me. An independent living home requires suitable

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Occupational Therapist Diann Dougherty helps me understand how ADLs can be useful in my writing a chapter on designing a kitchen. Shown here the wheel chair accessible stove at HealthSouth’s Rehabilitation Hospital at Pleasant Gap, PA. The specially designed lower burners make preparing meals considerably easier.

 

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III. Academically respectable guidance

 

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IV. Designing a Home for Mobility Independence

Who is in charge of the design?

You are.

 

 

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Kitchen design based on activities of daily living

[Appreciation to Dr. Sonali Kumar, who provided coffee.]

“A usage narrative, 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.”

–Writing Effective Use Cases[1]

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Usage Narrative: Making Coffee

Actor: Disabled resident

Location: Kitchen area of apartment.

[Subset of Apartment inside; subset of Apartment inside and out.]

Activity:

  • Preparation of meals:

1)      Breakfast

2)      Lunch

3)      Dinner

Breakfast consists of providing:

  1. Coffee
  • Coffee actions:

1)      Coffee pot

2)      Coffee pot sits on counter

3)      Water

4)      From water faucet

5)      Coffee

6)      From cabinet

7)      Cup

8)      From cabinet

9)      When ready, put coffee pot and cup on dining room table.

10)   Replace coffee to cabinet.

11)   Wipe counter clean.

  1. Juice
  2. Toast
  3. Eggs
  4. Potatoes

After breakfast cleanup involves:

Wash:

  1. Dishes
  2. Coffee pot
  3. Pans

Return to storage areas.

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Footnotes

  1. On June  3, 1922 Winston Churchill created the genre known as “white paper” with this publication: https://unispal.un.org/DPA/DPR/unispal.nsf/0/48A7E5584EE1403485256CD8006C3FBE
  2. Paul Carls
  3. Writing Effective Use Cases by Alistair Cockburn

 

 

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References

Books

Doidge, Norman (2007). The Brain That Changes Itself, Stories of Personal Triumph from the Frontiers of Brain Science. New York, NY. Penguin Books.

Durkheim, Émile (1897; 2006 translation). On Suicide. Trans. Robin Buss. London, England. Penguin Books.

Gratz, Roberta Brandes (2010). The Battle for Gotham, New York in the Shadow of Robert Moses and Jane Jacobs. New York, N.Y. Nation Books.

Hamilton, D. Kirk & Watkins, David H. Watkins (2009). Evidence-Based Design for Multiple Building Types. Hobokin, NJ: John Wiley & Sons.

Jacobs, Jane (1961). The Death and Life of Great American Cities. New York, N.Y. Vintage Books.

Keesing, Roger M. (1976). Cultural Anthropology, A Contemporary Perspective. New York, N.Y. Holt, Rinehart, and Winston.

Kottak, Conrad Phillip (20080. Cultural Anthropology, Twelfth Edition. New York, N.Y. McGraw-Hill.

Kunstler, James Howard (1993). Geography of Nowhere, The Rise and Decline of America’s Man-Made Landscape. New York, N.Y. Simon & Schuster.

Lynd, Robert S. and Lynd, Helen Merrell (1929). Middletown, A Study in Modern American Culture. New York, N.Y. Harcourt Brace Jovanovich.

Riesman, David; Glazer, Nathan and Denney, Reuel (1950). The lonely crowd : a study of the changing American character. New Haven, CT. Yale University Press.

Solkoff, Joel (1981). Learning to Live Again, My Triumph Over Cancer. New York, N.Y. Holt, Rinehart, and Winston.

 

 

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Periodicals

 

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Internet citations

 

 

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Joel Solkoff, Adjunct Research Assistant, Department of Architectural Engineering, Penn State, University Park, PA, [email protected]  814-689-9363

 

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