More Adventures of the Accessible Home Variety

 It has taken me six years to adapt my small condominium apartment for life as a wheelchair user.  There are several reasons for this, the first being financial. The second involves finding competent people to do the work at affordable rates and the third is the general lack of help for people with disabilities with regard to financial assistance with what can be costly endeavors.

Beyond these, the biggest problem is finding adapted housing, whether one rents or owns. Builders tend ignore universal design unless it is shoved down their throats. The general mentality reflects the abelism found elsewhere in society. Add to that the belief that it is not as profitable, and we have a shortage of housing for what is a growing population as people age and others deal with the ravages of war, the consequences of accidents or the onset of illness. Those who are born with their disability must also, if they are afforded longevity, age with it which further extends the need for adapted and affordable housing.

During my sixteen years as a homeowner, I have met scores of general contractors, only one of whom had the necessary certifications required to be an aging in place specialist. As a result of dealing with overblown promises, poorly done work and repeated efforts to adapt things correctly, the dent to my personal savings has been extreme. My eleven-foot reach-in bedroom closet is a case in point.

It might be easy to dismiss a closet as inconsequential. However, everyone needs to reach their clothing, whether hanging or in drawers, and since I lack the funds for my own butler, it is I who must launder, sort and put away clothing and I who must dress myself. That said, this closet, like most of the rest of my humble abode, was never designed for anyone at wheelchair height, a concept some builders still fail to grasp, even in the age of the ADA.

The last licensed contractor who did anything in this closet was two years ago. Another of his colleagues, two years prior to that. Neither apparently got that I needed to reach or hang clothing from a seated position, leaving the shelving and rods too high. I struggled with a reacher until the shelves began to lean a bit, at which point I asked a handy neighbor for help.

After some initial problems with a pre-fabricated shelving and rod system which he and I abandoned in favor of a simple rod and shelf with brackets placed into dry wall, the new closet, measured for my height and the items that required hanging, was installed to my great relief.

That should be the end of this rather short narrative. Sadly, it is not. Last Saturday, half of the closet fell down. It appears that the studs are not evenly distributed through the back wall  and the anchors were insufficient to hold even light objects. My neighbor did install new anchors, but now I worry about things falling should I need to move anything in the closet in the future.

 A professional closet company and designer have been consulted, hopefully for the final attempt at dealing with this issue.

I should point out that my neighbor is a great guy and did everything he could to help. Additionally, the closet itself is not over brimming with clothing or other items and none are extremely heavy. Should anything fall around my head, it will stay where it lands. I also have had a problem with my accessible shower stall which took six months to resolve. The only benefit one derives from using a licensed builder is legal recourse should the job or attempt at remediation, fail.

Struggling with an inaccessible public sphere is bad enough, but struggling in one's home, whether rented or owned, is ridiculous and potentially debilitating over time. I wish more builders cared about the quality and consequences of their work and that all were required to take special certification to be aging in place specialists. They are sorely needed.

BADD 2015: Vesuvius on Wheels

About to leave the wheelchair-designated bathroom stall of a large discount store, I found myself eye level with a middle-aged woman wielding a cane. Under normal circumstances, I would nod in quiet greeting and be on my way. This woman, however, had other ideas. "Nice chair," she began and before I could respond, she launched into a diatribe about how she was going to walk until she fell over dead because her doctors advised her that going into a chair would shorten her life and didn't I miss being active and wasn't I terribly brave...

Better judgment dictated a swift exit. With images of lovely, smart wheelchair using people I have known swirling through my brain, I instead said with great clarity: "What A Load of  Crap,"
adding for emphasis that she should not be so invested in her doctor's flawed perspective since he or she was not interested in her long term mobility, strength or happiness but trapped in ideology that saw people in chairs as broken, a pervasive and toxic belief that people cling to out of fear or stupidity.

Then, on a roll, I asked if there were things she no longer did because mobility and fatigue were an issue. Reluctantly, Ms." I'll walk till I fall over dead," nodded her head. When I asked whether she participated regularly in sports, swimming, church or volunteer activities, the now silenced woman shook her head.

"My chair makes all of that possible for me," I said evenly, noting a glint of mist in her eyes...
"Look," I finally concluded, "A chair does not mean you are less than you were. It is a way to move in the world when you otherwise would not."

I left that interaction shaken. Upset still and always at having to deal with episodes of this kind, I soon found myself awash in memories...

Disabled since birth, it was not until I had to use a wheelchair just prior to turning fifty that life took a few interesting twists. One was an absolute absence of support. The physical therapist who ordered my chair advised that I go to the nearest indoor mall and practice. Nothing was mentioned about home modification, and my once cosy home became an obstacle course. Additionally, I found myself often alone since over half of those who were once friends fled for the illusory safety (read privilege) among the walking two-legged.

There were many nights I did not sleep. My closest girlfriend, whom I'd known since my earliest undergraduate days watched these changes and my flagging spirits and sagely suggested I find some women wheelchair users and talk to them. She also advanced the idea that people mourn changes in their lives, a healthy response, especially if they are to find different ways to live.

I  started reading blogs, trying to see who was out there who would be willing to talk with me. To my great surprise, I found WCD, FridaWrites, Katja, Wheelie Catholic, Diary of a Goldfish and others. The most steadfast of these was Beth McClung. She answered every question I ever put to her, sometimes with great humor. She sent post cards. I sent donations of stamps and other small things when I could. We spoke about many things, including where each of us had lived, and the mourning that my friend Pauline originally discussed with me.

Today, though Beth is gone, her razor sharp wit, penchant for analysis and humor come back to me, especially when I encounter people like the woman in that store, terrified but stoically sold on the ideas that disable ism thrives on: "otherness," symbolized most often by the wheelchair.

Rooted in the falsity that those of us with wheelchairs are pitiable, less than, limited and somehow less worthy if we cannot be "fixed," otherness and its attendant disable ism have become endemic, so woven into every facet of our institutional and cultural life that they shape individual attitudes, giving rise to perceptions few question. While laws help with physical access, their enforcement still largely reflect disable ism. Sadly, this is an attitude that those with disabilities sometimes assume, as Beth noted in several posts that I can recall.

When one night I bemoaned the changes wrought in life due to my chair, the reply I received was swift and along the lines of, "Your chair isn't the problem. It is a mobility device. If you'd rather be in bed or crawling around on your hands, I suppose you could, but your chair is a much better option."

She was right, of course.

I got out of the house, had adventures, wasn't afraid to open my mouth, e-mailed my legislators, took on disability inclusion and LGBTQ projects for my small congregation, and began sending cards to anyone I found who wanted one. I also took several opportunities to speak to med students in my community, all things I might never have done but for the changes in my life that led me to Beth and other bloggers. This week, as we commemorate the tenth anniversary of BADD, I tip my hat to all of those who write, share their lives and roll on somewhere...

To see more BADD2015 offerings, visit

The Weekend and Other Things...

This weekend, a dear friend lost her mother.  The almost-ninety-year-old's death was expected as she had begun sleeping round the clock and was no longer taking fluids or nourishment. By all accounts, her passing was peaceful. My friend is an only child and while grief is different for all of us, it is inevitable. I learned of this loss from my friend when she came to my home for a planned social gathering. She was calm, but somber and brought her mother's favorite chocolates for us to share. 

This friend is one of the few able-bodied people I know who describes herself as a TAB person, a realization that came about as a result of her experiences with increasingly aged parents and others. While most people see this only in the abstract and ignore it until a mental or physical change occurs, my friend has willingly and I think pragmatically, embraced it.

She is also not shy or reluctant around my wheelchair and has spoken publicly about issues of disability in her own family. Her ability to calmly deal with whatever presents itself and to sincerely accept her friends for who and how they are is a rarity in a world that regards disability with responses ranging from pity or ignorance to hostility.

Most of us have also been subjected to some variation of inspiration porn, that insidious abelist ideology that paints persons with disabilities as (insert desired hyperbolic adjectives here) so that the more able-bodied persons making the declaration can continue to feel lucky, superior, charitable or good-hearted. A variation of this occurred when months ago a member of my small Reform congregation told me that he was getting points from God for helping me and others. I find this offensive for a variety of reasons not the least of which is because he is putting a narcissistic twist on a valuable Jewish teaching which commands us to repair the world and help others. The notion of points from an old man in the sky is purely his own and something I hold no truck with.

My friend, who belongs to the same congregation, chalks this up to degrees of needing to fill needed and mental illness. She is able to deal with him in ways I simply cannot. I have chosen to distance myself from this attitude, and various people in my congregation who hold it. I am not a project, an object of pity or scorn. I am simply a person as is she.

When on Friday evening I say Kaddish with my friend and her family for her mother, I will not be sitting there thinking about what a good person I am to show up for my friend or whether others think me a good person for being there with her. I will instead be thinking about the woman who raised my friend and gifted her daughter with an immense spirit and the security of knowing who she is and what she is about. I will abide with my friend through this loss and her grief because to do so is a privilege born of respect and care. That is what friends do.

Wheelchair Lust And Other Thoughts...

 It began with a simple question in an e-mail reply to me:

"Can you take your wheelchair outside to enjoy Spring?"

The short answer to that question is yes...but as every chair user knows, where one can go, particularly in a standard ultralight, very much depends on a host of factors such as upper body strength, terrain, weather and man-made obstacles, to name but a few.

 In the six years that I've owned my Tilite, I've sunk in loose sand, gotten stuck in mud, had a castor split and fallen from the sidewalk into a ditch next to a major roadway. Additionally, I've had more than my share of uneven or higher-than-allowed-by-law curb cuts, potholes, debris that punctures and pops tubes and leaves one stuck, and uneven pavement, which when hit, left me on my knees in a crosswalk directly in front of a UPS truck at a light. That incident was over quickly, thanks to the friend who was with me and a well-muscled stranger who did not hesitate to grab an arm after righting my chair. At one point, my electronic power-assist wheels got wet in a surprise rain storm. For the cost of the repair, I can buy a new chair. There are alternatives to those electronic power-assist wheels, but I need to find a vendor willing to work with me, and so far, I have not. The politics and pricing among vendors of wheelchairs is yet another post. They may see themselves as wonderful purveyors of  mobility technology, but only if one has a pot of ready cash or stellar medical coverage, which is not the case for a majority of those needing such devices in this country. This is in part, why online transactions are often preferred over brick and mortar sales. The price points vary, sometimes dramatically.

My recent foray into the world of all terrain chairs pointed out not only variability with respect to price, but form and function. Mountain Trike, manufactured in the UK, is an all terrain chair that allegedly goes over all types of surfaces, including dirt, snow, uneven pavement and grass. With an almost eight thousand dollar price tag, it will not be alighting at my door anytime soon. An American alternative to this is the all terrain Freedom Chair. It too goes over uneven pavement, bricks, crappy curb cuts, packed sand, grass, dirt and snow, from what I have seen in the promotional materials. It can also be easily disassembled to fit into the trunk of a small car and according to the manufacturer, the chair is small enough to be used inside as well as outdoors and can fit on a standard chair lift for those using public transport. Made from bike parts, it can be taken to a bike shop if any repairs are required and its $2300 or so price tag puts it in reach of more potential users. I also checked out a couple of additional all terrain chairs from Spin Life and Sportaid, but they were clunkier and could not be used easily inside should the need arise. The fact that the wheels are rubber has me a bit concerned since I have a Latex allergy but I'm going to suss this out with the doc or the PT this week. I'll admit it: If this chair can do as claimed, I have a raging case of wheelchair lust. I would like nothing better than to make it my own, taking it out over every surface my ultralight cannot handle and re-staking my claim on the world of parks, beaches, older parts of town and the uneven sidewalks in my own neighborhood...

Happy Sunday.

I Do Not Know If I Can Revive This Blog, But It's Worth A Try...

I started this blog five years ago with four regular commenters, three of whom are nowhere to be found, it seems. My aim at its inception was to connect with other disability bloggers, something I did with two very special people, one of whom now is sadly gone. Unlike many bloggers who come
and go, she was a constant and had a profound effect on my life, both personally and in blog land.

 I spent increasing time at my other blog, which began as more or less an online journal. Over months and then years, my non-virtual life and other concerns consumed my days to the point that it became difficult to juggle all, so this faded, not to be accessed again successfully until this morning with help from Blogger since the original log in had become lost. The other has also seen a decline in both writing and readership.

The years have been filled with losses of the most personal kind. While this is often a sad side effect of late middle age, with one exception, all were younger than I, making their losses that much more poignant. Even two of my original four cats have passed away, changing our home and life for the two remaining. My flat has undergone limited renovation as well. The inside affords greater comfort while I continue to battle the outside. Two accidents involving my flipped ultralight chair have made me more cautious. With time, I learned the limitations of my chair and mourned the change to my mobility and the myriad issues that accompany life in a chair. I am now at the point of needing a second chair, and unless I opt for a cheap hospital fold-up, as I had prior to this ultralight, I will once again be without insurance cover to defray the cost.

Life in my locale continues to be problematic for those of us on wheels and others living with disabilities. Changes in public transport, which was poor to begin with, make the cost of getting around nearly impossible for many, especially those reliant on Medicaid, which no longer pays for trips to medical providers here as of March 1.

ADA-mandated paratransit service in this area is no longer a reliable way to get  anywhere on time if one has appointments due to increasing demand. Companies such as Uber are vying to come in but have asked legislators for waivers so that their drivers do not have to provide wheelchair transport, which apparently is being granted. The taxi companies, which are mandated to provide wheelchair transport, would like the same waiver and are fighting Uber's attempts to come here. We have no subways and our regular bus system has always been abysmal. Hardly a pretty picture and something about which those who are not disabled, without the ability to drive or elderly and on fixed incomes rarely consider.

Time will tell and I will be back to make additional changes to this blog. As both Easter and Passover loom, I wish any readers who celebrate either a wonderful holiday.

Blogging Break:

Owing to multiple projects, a touch of tiredness and feline mayhem, Full Tilt is temporarily coming to a stop, otherwise known as a blog break.

Full Tilt nonetheless appreciates the readers and followers of this blog, so if you wish to communicate during this hiatus, feel free to e-mail. There have been a number of interesting posts from other bloggers that Full Tilt wishes to continue discussion of but time and the demands of real rather than virtual life are most pressing at the moment.

As a famous general once commented, "I shall return!" (Hopefully with renewed vigor!)

Ranting Anew

Sometime ago, the Butterfly Cauldron blog, found at http://butterflycauldron.blogspot.com/, posted a piece that discussed life while working full time with a disability and dealing with not only the perceptions of others regarding what appears to them to be laziness, but also dealing with one's own frustrations, thwarted ambitions and financial concerns, among other things.

This piece and all of the comments which followed hit me squarely in the gut. For almost two years now, I have been going from one doctor's appointment to the next trying every available protocol for a very damaged knee. I thought, it appears incorrectly, that like the other chronic issues I deal with stemming from living with cerebral palsy for almost fifty years, that it would be manageable, the consequences relatively minimal and that I would find a job in my field after completing a graduate degree.

After an allergic reaction to the latest medication, I was sent to see an arthroscopic specialist who informed me that the knee damage was severe, that the knee was now twenty years older than the rest of me and that I would not gain any benefit from arthroscopy. After having been warned off total knee replacement by another specialist, I was left with the possibility of a partial replacement of the knee, although there is nothing in the medical literature to suggest this procedure was optimal for patients with CP and those with my condition who have had joint replacement are no longer walking.

The problem is the joints are not constructed to withstand the variability in gait or movement found in those with CP, thus, they have no predictable life span. That leaves the patient with greater possibility of joint failure, numerous surgeries more often over the remainder of the life span and, with any surgery, there are other risks and recovery issues to consider.

For those who may be unaware, cerebral palsy is a neurological condition usually stemming from damage to the motor and often other areas of the brain. In my case, it effects my mobility, balance and coordination and although my case is fairly mild, age and time have brought stress on joints because of the way I move and walk. This has led to osteoarthritis and other secondary conditions that have become increasingly well known among adult CP patients, although until the current generation of doctors, these were not discussed or documented, mostly because docs aren't trained sufficiently, don't see large numbers of adults with CP and until recently, adults with CP often failed to live normal life spans.

Now, we are living into old age and acquiring conditions due to the CP that complicate already thorny issues such as balance, mobility, work, independence and quality of life. Fatigue has become commonplace for me, as has pain, which varies with the duration and frequency of activities, and since I lack the talents of a soothsayer, I've no idea what to expect next and how that will effect the delicate balance achieved in my life thus far. My doctors, though sympathetic, largely put out fires rather than preventing anything, so they cannot tell me what to expect.

I had planned to graduate, get a job and move, working until traditional retirement age. Since my knee did not become problematic until recently and I had no reason symptomatically speaking, to assume life would not continue as it had for many years, this new development has left me worried financially, angry and frightened of the future by turns emotionally and wondering at the snail's pace of our medical and social service bureaucracy.

These concerns are not new to most of you, and you may be shaking your heads and thinking I might have seen this coming, but honestly, I did not. I am waiting for a sports chair with power-assist version three wheels, a bit like waiting for Godot,which in itself has been stupefyingly slow, and trying to figure out how to plan for several years ahead.

Unlike Butterfly Cauldron, I do not yet have a plan and find myself increasingly frustrated in trying to formulate one. Since college, I have always lived on my own and rarely had need of a chair or any other assistance. Until now. My ambitions toward a doctorate have been suspended, and I'm not sure about my work options anymore. I also have three chronically ill pets and will have to make arrangements should I no longer be able to live with them or provide their care.

Damn! I thought I had more time and did not expect to be thinking about these things before turning fifty...