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.
++++
Raison d’etre for this post.
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:
http://www.phrc.psu.edu/assets/docs/Publications/PHRC%20Final%20Stucco%20Report.pdf
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 Center of Independent Living
- Perveyors of wheelchair ramps
- The Mayo Clinic’s advice on fall prevention
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 Seeking Alpha–a site focused on financial and investment advice–see“Marketing Opportunities As A Consequence Of ‘Baby Room’ Retirement”
- 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.
++++
Addendum
On December 12, 2006, I described the experience of dislocating my shoulder for WPSU radio.
Go here to listen: http://legacy.wpsu.org/radio/single_entry/LL-1756/
Or, read the transcript
Toe-Hold on Penn State
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 scooter
- 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.
++++
References used in this post
1.
