This review explores the relationship between engagement with the creative arts and health outcomes, specifically the health effects of music engagement, visual arts therapy, movement-based creative expression, and expressive writing. Although there is evidence that art-based interventions are effective in reducing adverse physiological and psychological outcomes, the extent to which these interventions enhance health status is largely unknown. Our hope is to establish a foundation for continued investigation into this subject and to generate further interest in researching the complexities of engagement with the arts and health.
Tomorrow is my last day of occupational therapy at HealthSouth. Last week, I completed the 28 weeks of physical therapy Medicare allows. I asked HealthSouth C.E.O. at Pleasant Gap PA yesterday as she prepared for a meeting and I for a 10th cup of coffee, how Medicare came up with the number 28. Susan Hartman said she thought it an arbitrary number. I speculated Medicare consulted with a palm reader.
The issue matters because I experience considerable pain over the course of the day. Last weekend, I figured the level (on a scale of one to ten) was over 7.
Two years ago, I would have dialed 911 and waited until the ER physician injected me with morphine. Not that I would get enough morphine. Not that it would be injected quickly enough. The principal relief was not the medication. Rather, the sense at least I was doing something rather than nothing.
A little over a year ago, I had a spinal stimulator surgically implanted. The device is manufactured by Medtronic of Minneapolis. Medtronic also manufactured the pacemaker which studies have shown my heart relies upon to keep me alive.
There have been times over the past three years pursuing specialized surgery in New York when, I thought I would rather be dead than experience the pain which on several occasions had me rolling on the floor in agony.
April 8th will be cause for celebration when my granddaughter reaches her second birthday. Ever since Juliet appeared in my world and hers, the idea of premature death (however relieving) has been replaced by a commitment to persistence whatever the cost.
I need to be alive for Juliet—at least until she graduates from college and architecture school and begins designing airports and wheel chair accessible jets.
In October 2016, I celebrated my 69th birthday at HealthSouth recovering from the surgery which has since kept me out of the ER. The sophistication of Mount Nittany Medical Center has reached the point where surgery once available only in New York and at sophisticated centers such as Johns Hopkins, MD Anderson, and of course the Silicon Valley’s facility in Stanford (where the Corporate Angel Network flew me a seeming lifetime ago for the expertise that resulted in my being on this planet and not in the world to come).
Now, sophistication has reached river city. Last year I received at State College the surgery that makes regulating pain achievable. However, the value of a vibrator in my spine reducing dependence upon opiates is most effective when coupled with physical and occupational therapy.
It helps reduce pain when I move my body—especially at those moments when I delude myself into believing lying in bed in a fetal position is preferable to transferring to my scooter, navigating to the kitchen sink, and standing safely. Standing is better than sitting. Using the parallel bars (not available at home) helps build strength and reduce pain.
Now that I have achieved the Biblical-described age of three score and ten, Medicare will pay for something.Given Medicare, the insurance feels happiest when it pays too much for relief best achieved at lower cost preventatively.
I paid into the trust fund with extremely well-paid consultancy fees from Silicon Valley companies for my expertise as a senior technical writer. I can resume well-paid employment to compensate HealthSouth for the $300 or so cost of an hour of physical therapy. I would rather do that than complain about Medicare. However, putting myself back on the money-making track requires patience and persistence—convincing potential employers reluctant to pay a 70 year old paraplegic.
The consequence of my not having access to 36 hours of physical and occupational therapy between now and January—when the arbitrary 28 weeks of rehabilitation resume—might very well mean that because of a penny wise and pound foolish Medicare, your tax dollars will pay for expensive hospital care that could easily be avoided.
Liz Beaulieu, my editor at HME (Home Medical Equipment) News, has commissioned me to resume my published work for HME News with a 750 word article on the subject of Medicare’s reimbursement policy on rehabilitation. Although Liz is a fan of long New Yorker articles (appreciation she sneaks into her editorial notes), I will need to be brief.
First, however, I need to be comprehensive. I have requested a formal interview with the able Susan Hartman, C.E.O. at HealthSouth’s Pleasant Gap facility. Naturally, I will be descending upon the press office of the Centers for Medicare and Medicaid Services in Baltimore. I will start at the top seeking an interview with Seema Verma, President Trump’s choice to run the agency (who is pals with Vice President Pence).
I also will be seeking interviews with Mark J. Tarr, who runs the HealthSouth empire from its headquarters in Birmingham, Alabama. On its Securities and Exchange Commission 10-K form, HealthSouth (eventually to be renamed EncompassSouth) notes: ““We are the nation’s largest owner and operator of inpatient rehabilitation hospitals in terms of patients treated and discharged, revenues, and number of hospitals. We provide specialized rehabilitative treatment on both an inpatient and outpatient basis. We operate hospitals in 30 states and Puerto Rico, with concentrations in the eastern half of the United States and Texas.”
I will be arranging interviews with Senators Casey and Toomey. Next step is to follow the advice of Rep. Thompson’s excellent press officer Renee Gamela who wrote yesterday, “Hi, Joel! Yes, you should contact Barbara Ives in GT’s Titusville office.” Then, I will interview Rep. Thompson, who was a physical therapist before his election to Congress.
My current (ever changing) plan is to report all (in my customary dribs and drabs work in progress publication) in a posting on my website where my webmaster is the excellent Kathy Forer. Sarah, my one and only sister who knows me all too well, says writing long is my default. Hence, I will write long then boil it down to 750 words and submit to HME News.
Continually hat in hand, it would help if you were to send me $18 given the paltry state of my checking account which tomorrow (after checks are cleared) will contain $16.34. Yesterday, I had to pay Harvey Israel, my wonderful dentist, for emergency work. Yes, I have set up a crowd funding proposal. Need to set up more. The $18 figure is based on Jewish tradition. In the Hebrew alphabet, each letter has a number value. The alphabetical equivalent of eighteen is the Hebrew word for life—Chai. When my late mother Miriam (a Hebrew school teacher) wanted to donate to a cause, but did not have enough money to do so as she liked, she donated $18.
If I were not a [Jewish] Buddhist, this would be my Mad As Hell and I Can’t Take it Anymore moment.
It is 3:04 AM. I am making coffee. Washing the dishes. A shower is overdue. At 8:10 a Cataride para-transit bus will pick me up here in Downtown State College where parking (believe it or not) is a problem.
This is the parking lot at Addison Court–a residence for low-income elderly and disabled: A ghetto by any other name is a ghetto.
After riding through the astonishingly beautiful countryside of Centre County, PA, I will be arriving at HealthSouth, Pleasant Gap–one of an empire of 123 U.S. physical and rehabilitation hospitals based in Birmingham, Alabama. Coming soon, as a result of a recent merger, HealthSouth will have a new name: Encompass South. [East, West, and North still in the planning stage.]
Whenever possible, always go to the Securities and Exchange Commission 10-K form.
This is what the parking lot at HealthSouth is like when I arrive before 9 this morning.
At 9, I will begin the routine Pittsburgh-trained Occupational Therapist Christine Vuchenich has established. The routine consists of:
Stretching exercises at her wooden table.
Use of the Baltimore Technology shoulder stretching wheel
Push ups and other exercises.
On Friday, progress stops. Then, I have to resort to in-home exercises. No sophisticated equipment. No informed instruction. Just hours a week of exercise exercise exercise.
Last week, I completed the 28 weeks of physical therapy with Shannon Duranko who received her doctorate from Slippery Rock University. For the first time (last week) I walked the length of the parallel bars and back.
I do not have parallel bars at home.
What I have at home is persistence. Think of Medicare as city hall. I have already begun my plan to fight city hall. Medicare’s short-sighted cutback of physical and occupational therapy means that using movement to relieve pain likely will be replaced with using Oxycontin to relieve pain. Instead of continuing progress so I might use Lofstrand crutches and a walker for mobility–with the eye on the prize of being able to walk again–Medicare may once again spend unnecessarily for frequent trips to the emergency room or for hospitalization.
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.”
Figure 1.1. Nadya Ludwig in her customary position watching the front door at Addison Court and greeting all 95 residents by name 
The generation born after the Second World War is commonly referred to as “The Baby Boom Generation.” The U.S. Census Bureau provides statistics on Baby Boomers not as helpful as one would desire. The census definition begins in 1945 (when World War II ended) until the 1960s (when the birthrate began to decline). Only a portion of this demographic is useful for an understanding of housing requirements for the elderly and most especially the disabled. Disability rates are highest among those 65 and older–the focus for this analysis. 
This work is a natural outgrowth of a study I have been doing with Dr. Ali Memari of the Pennsylvania Housing Research Center (PHRC). The study is a guide to designing the entrance and interior of a single-family residence. Portions of this study (to be published independently) are included here to provide guidance on design decisions and principles required to understand methods that must be employed to make housing accessible. Especially helpful is the concept of “evidence-based design” which the architecture, construction, and engineering (AEC) community has embraced. . One former president of the American Institute of Architects has described how evidence-based design has swept through her profession. More to the point, evidence-based design is the overriding principle (described in considerable detail both here and in the technical manual).
The Problem with sociology–Not the digression it seems
The origins of sociology are not in question. The question: Is sociology a science?
When Émile Durkheimestablished sociology as an academic discipline before World War I, there was no question that sociology was a science.  Oh, how the mighty have fallen.
“Science]is a systematic enterprise that builds and organizes knowledge in the form of testable explanations and predictions about the universe,” writes Edmund Wilson in Consilience : The Unity of Knowledge. 
I regret to say sociology suffers from failed repute in academic circles. Sadly, this has affected adversely the academic community’s regard for the popularity of a book I love; viz. The Lonely Crowd by David Reisman et al. who after publication became Harvard’s Chairman of the Sociology Department. 
“In midcentury America, sociologists for a while rivaled even psychiatrists in their seeming ability to explain everything about everything. The most influential sociologist of the era was David Riesman… Originally intended for the college classroom, ”The Lonely Crowd” unaccountably landed on the best-seller lists and stayed there for months and months as thousands of Americans anxiously examined themselves and their neighbors for directional indications.
“In short, there’s nothing very rigorous about ”The Lonely Crowd,” but the book feels scientific all the same; its very structure imparts a suggestion of seriousness and gravitas.” This critique by New York Times writer Charles McGrath reflects distress within sociology academia. A notable Harvard sociologist who best expressed this distress is Orlando Patterson. Writing in The New York Times, Patterson states, “The dishonoring of David Riesman, and the tradition of sociology for which he stood, is not a reflection of their insignificance. It is merely a sign of the rise in professional sociology of a style of scholarship that mimics the methodology and language of the natural sciences — in spite of their inappropriateness for the understanding of most areas of the social world.”
The relevance of Dr. Patterson’s criticism to this critique is twofold. First, it is necessary to ensure this analysis is indeed science. Second, it is important to heed Dr. Patterson’s concern that a larger analysis of a problem is missing in the current academic wave of sociology’s repute. Hence I proceed with guarded optimism this analysis must indeed be science. This inquiry focuses on the significance of community when analyzing the effectiveness of renovating housing for the disabled. In doing so, I pay homage to the principles which Emil Durkheim asserted when he established sociology as an academic discipline. 
Fortunately, this analysis uses as its organizational construct the classic work by Robert S. Lynd and Helen Merrell Lynd two Columbia University-based sociologists whose work has consistently been held in high repute.
This analysis reflects its light from the considerable contribution of the Lynds’ 1929 study Middletown.  The study helped provide a structure to guide one to an understanding of disability housing and indeed disability and elderly equality. The intent of this analysis is to pour cold water on the sense of accomplishment one achieves from renovating a residence to make it wheel chair accessible. A residence in the wrong place is no residence at all. After all the elderly and disabled are best served by a public transit system also offering dependable para transit.
It is directly relevant to note the disabled and elderly are a group discriminated against considerably . Let us first focus on the matter at hand; viz. renovating. While focusing remember there is a leitmotif here (the community where the renovation takes place) which will emerge as the goal of this analysis. The goal is integration of the house renovated for the disabled and the community without. Without complete integration access is incomplete and resources are wasted.
Let us start with a house where the resident and principal source of income becomes disabled.
What follows is suggested bathroom design (with appreciation to Blueroof’s Experimental Cottage, McKeesport, PA) :
The bathroom and bedroom are clearly the areas in the residence where accommodations are required for safety and other purposes. One example of an issue worthy of attention concerns the use of mobility devices useful for getting from room to room and whose function may affect the ability to make individual rooms accessible.
The issue of a sling an individual can use without assistance to lift oneself up from wheelchair to toilet seat or from bed to wheelchair has a significant effect on the process of home renovation.
Figure BR 1. Sensor warning of fall hazard
For individuals with mobility problems, the bathroom is the most dangerous room in the house. It can be wet leading to falls. Clients may be impatient to get in and out quickly thus lending to its danger. There may be inadequate rails. Depending upon when the residence was built, the entrance and exit may be uncomfortably narrow. This might be a good place to consider removing walls and widening the hallway.
Entrance and exit
In many older residences, the path leading to the bathroom is a narrow one. Figure BR2 shows the client using a mobility device to come from the bedroom [behind] in the direction of the refrigerator [ahead].
Figure BR2. Narrow bathroom entrance
The width of the hallway with the bathroom door closed is 41 inches. ADA standards call for a width of 48 inches. The reader may not help but notice that because of a shortage of electrical outlets, the toaster is on the floor.
Figure BR3. The hazards of a narrow bathroom door.
With the bathroom door open the width is only 38 ½ inches. Figure BR3 shows what happens when a powerful power chair, driven by a client impatient to get to the bathroom, collides with the door. A door in a narrow hallway causes difficulties for an individual riding a mobility device including the problem of being able to close the door.
One solution is a pocket-door once fashionable in the late 19th Century which is making a comeback especially for those modifying homes for greater mobility.
Figure BR4. Sliding pocket doors
Clients using the bathroom sink below must go elsewhere, to the kitchen sink for example (or bring along their own mirror) to comb hair, apply makeup, shave, and perform other daily rituals.
A lower sink and mirror set are the most immediate solution. Two grab bars at the base of the sink would make it easier for the individual with a mobility disability to stand or maintain balance. A specially designed sink located elsewhere in the residence could save on remodeling costs. Below is a sink installed at an appropriate height in a residence bedroom which can be modified for individual requirements.
Figure BR5. Bathroom sink
Insertion of an additional sink (either in the bathroom or elsewhere in the residence) also is useful to minimize bathroom accidents can be cleaned up without becoming a major issue)
Other bathroom considerations include:
Where to put one’s cane, crutches, or park one’s mobility device
Storage of toiletries so they are accessible
Clients using the bathroom sink must go elsewhere, to the kitchen sink for example (or bring along their own mirror) to comb hair, apply makeup, shave, and perform other daily rituals.
Figure BR6. Kitchen sink (provides options not available at bathroom sink)
Going to the toilet requires more prudence than adults without disabilities require. A mobility disability, by its nature, means it takes more time to get from one place to another. Individuals used to going to the toilet on a schedule comfortable to them before they became disabled may be surprised at how much extra time they must factor in.
Figure BR7. Toilet
The toilet shown above should be reassuring. The two grab bars are sturdy and well-positioned. However, it is always helpful to make sure the toilet seat itself is securely fashioned and to check each time before using.
For individuals with transference issues, there are transfer boards for going from wheel chair to toilet:
Figure BR8. Toilet transfer board
This is a convenient way of transferring from a mobility device to the toilet. Less elaborate transfer boards are available. For those with more serious mobility problems, a sling attached to the ceiling is recommended or one might consider installing tracks on the ceiling so a device the individual can use by oneself can easily be moved from the bedroom where it lifted the individual from bed to wheelchair.
Use of a sling
Figure BR9. One of a wide variety of slings
Within the past five years, two developments have made it practical for individuals with severe mobility disabilities to live independently. The first is the development of a sling an individual can use oneself for transference. The above is not a good photograph and should be replaced with a better one. The second development is the use of the ceiling as a method for locomotion; namely, one puts oneself in a sling attached to the ceiling; tracks along the ceiling make it possible to move across the residence, and one can lower oneself to, for example, a bed or a wheelchair in the kitchen. Notice the ceiling tracks:
Last year, I saw a trailer developed by Blueroof Technologies in McKeesport, PA for the use of veterans whose lower limbs had been amputated. The veteran was able to go by sling and ceiling device from bed to bathroom to kitchen for breakfast and then out into the world on a mobility device. Not all this information is relevant to the bathroom.]
Figure BR10. Ceiling tracks
If the individual does not allow enough time to position oneself at or on the toilet, accidents can occur just when they seemed most avoidable. Individuals who have not experienced an accident since childhood and who assumed such problems would not occur for decades find themselves discouraged when an accident occurs. For individuals who suddenly experience mobility problem, incontinence may be a temporary consequence and it is useful for the individual to understand that temporary means temporary.
Figure BR11. A convenient dispenser
Figure BR12. Shower head for roll-in shower
Figure BR13. Shower head ready for use
Figure BR14. Shower head ready to be put back in place
Figure BR15. Standard shower chair
Conventional bathtubs, such as the one below, provide problems involved with getting in and out. The market place, using slings and transfer boards, does make it possible for individuals with mobility difficulties to take baths. However, a roll-in shower, unless other considerations are involved (e.g. skin disorders, the requirement to soak limbs, and the like), the roll-in shower is probably the most cost effective.
Figure BR16. Think twice about getting into this bathtub
Off the shelf technology gives residents an added level of protection. Figure BR1 shows a motion detector in the bathroom. Motion detection makes it possible to alert caregivers (by a voice simulator automatically calling 911 or another number) if someone slips in the shower, for example, and does not get up according to a pre-programmed time schedule. The cost of this technology is relatively modest and has been falling steadily.
Imagine using this imaging technology displayed for design and working out such issues as how to get from scooter to bath chair? One might:
Turn the scooter around so water does not fall on the controls
Back up to the shower chair
Swivel the scooter chair locking it into place.
A hand rail would be useful to go from scooter chair to shower chair.
Figure BR17. Virtual reality is helpful when going to the shower
I am sad to say that Nadya Ludwig is dead. Nadya and Lilian H. served as greeters at Addison Court’s hug a firewoman and man on Valentine’s Day. The event was held at the bingo parlor across from my apartment. Each left the low-income disabled and elderly housing complex in which I live in an ambulance.
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.
Wilson, Edward (1999). Consilience: The Unity of Knowledge. New York: Vintage.
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.”
My lungs are clogged. After surgery at Mount Nittany Medical Center, the hospital commissioned a van to take me and my mobility device (a.k.a. scooter–an Amigo [accept no substitutes]) from State College to Pleasant Gap. There on my 69th birthday the HealthSouth Physical Rehabilitation nurse tried again to get me to breathe deeply–handing me the contraption from the night table. But [why is there a “but”?] but I felt too sick. Hence I am paying for it now.
Hint. Hint. Try singing this stanza. See what it does to your breathing.
Harry Truman, Doris Day, Red China, Johnnie RaySouth Pacific, Walter Winchell, Joe DiMaggioJoe McCarthy, Richard Nixon, Studebaker, TelevisionNorth Korea, South Korea, Marilyn MonroeRosenbergs, H-Bomb, Sugar Ray, PanmunjomBrando, The King And I, and The Catcher In The RyeEisenhower, Vaccine, England's got a new queenMarciano, Liberace, Santayana goodbye
It is 2:41 A.M. I am awake after four hours of sleep because my lungs are clogged with phlegm and so I sing (cough, spit, breathe) to Billy Joel’s Vevo video–a stylized recreation of my youth (and Billy’s [I am two years older than he; we share joint memories of the Edsel and Diem Bien Phu). [See Footnote 1.]
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.