Monday, April 13, 2015

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.

Sunday, April 5, 2015

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.

Wednesday, April 1, 2015

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.