27 October, 2017
Life Rolls Hotly.
Back home to Washington D.C. (again), Toronto, Virginia, protesting, rain, the Metro, and all sorts of independent shenanigans. To say that I’ve been enjoying the freedoms of my new Küschall would be a bit of an understatement. Yeah, yeah, as a “Brand Ambassador,” I guess you’d expect me to like it — or at least say I do — but I’m beyond the “like” phase. And not for the reasons you’d think.
First of all, yes, it’s a smooth, even, stable ride. And of course it’s super comfortable, body-hugging, and turns on a dime. Blah blah blah, all the usual crap you’d expect from a high-end, lovely, new chair, especially one as interesting as one from a brand that utilizes an umlaut. (Pro tip: Umlauts make things fläsh.)
Here’s my take, though: forget all the shite you can probably lift off SpinLife and try a new brand for yourself. I broke my *cough* titanium addiction and now I’m glad I did. Even if it’s a pound heavier (or a little less) than my old chair, the ergonomic, grip-tastic-alicious handrims MORE than make up for the 15 or so ounce diff. And for a rollinista comme moi, not miring my mani (or cloaking the bling) with Kevlar gloves is worth it. So. Damned. Worth it.
(I never could pull off that Haute Couture Pro Wrestler look terribly well.)
Then there’s the Metro Factor. Important for any city wheeler, the ability to seamlessly hop in and out of Metro/Subway/Light Rail cars is indispensable for those of us who travel frequently. I had just been home a few weeks before my last trip for business, so I had a perfect foil experience. The first time, I was in my old ‘chair and had difficulty getting anywhere. Between the poor fit, the rougher ride, and those old school, round, slippery handrims, I was exhausted just looking at the Metro map. This last time was a complete and unalloyed dream; the difference was THAT stark. I was able to fly down, get from National to my hotel in Bethesda, MD, get back to my conference in DC first thing, go all over the city, roll past several Metro stations in favour of a stroll in the lovely autumn weather, get back to Maryland, then do it all the next day. And to Virginia. And to a protest. Even out to suburban/semi-rural Maryland at the farthest reaches of the bus route, just because.
Then back to Niagara Falls and all over the Buffalo region, then all over downtown Toronto — including in the rain. (Those dynamic ergo handrims again! Zero slippage.)
All of these hijinks whilst looking my femme roulante best. Because here’s the takeaway: literally everyone has complimented my new throne. Friends, family, random strangers…even a hairdresser. Many of these people, especially the hairdresser and the randoms, had absolutely no reason whatsoever to compliment something like a wheelchair. That’s not something to which I’m accustomed to people paying flattery. Shoes? Sure. Lipstick? Always. Butt-car? Nope. But I ended up giving a full demonstration of the fold-up wheelie bars in the middle of a bustling mall, and I spent the preponderance of a coiffing explaining to my new hairdresser how my Küschall is so adjustable that it can be completely customized with a single Allen wrench. (I refer to it as, “The Ikea Factor”.) Every conversation has started for the same reason, though: hotness. People, even non-PwDs, stop me to tell me my chair is sexy.
Flattery might not get many people many places (allegedly), but thus far I can safely say, my Köoshy Küschall should get me everywhere.
25 October, 2017
Politics of DRessing
(It’s a Thing)
When I went home to DC a month and half ago, I met a fellow wheeler and struck up a conversation about disability. Because of the precarious political situation, I cautiously edged the conversation toward my left-leaning affiliation slowly so as not to offend or scare him off; I negotiated the fragile conversational terrain like (I imagine) a hiker edging her way around treacherous mountain pathways. I kept fiddling with my sparkly, oversized safety pin that I wear proudly as a sign that I’m a member of The Resistance. It was pinned prominently to the little red cardigan I was wearing over my cute, but somewhat slinky dress from earlier. I had tossed on the sweater to fight the evening chill without even thinking. Also, it matched my Louboutin stilettos nicely. Win-win, or so I thought.
Pretty soon I could tell that he, too, was hemming and hawing about what to say to me. He had a Trump-related sign on the back of his power chair, but it was ambiguous enough that I couldn’t tell if he was for or against the orange dotard. Finally, I just blurted it out, “Anyway, I think Trump’s a fucking moron. I’m sick of all of this. I’m tired of having my rights ebbed away daily, and I’m really tired of being afraid of World War III suddenly breaking out because he decided to take a crap and Tweeted something stupid.”
Uncomfortable silence howled around us for an eternity.
Then, like the sound of the first bird after a long, cold winter, he spoke, “Oh. I thought you were a Republican.”
I was dumbfounded. Was I not wearing the biggest, sparkliest, blingiest Resistance pin ever?!
“Why on EARTH would you think something so awful? Do I look like an idiot, or something?” I choked out, legitimately horrified.
“No, nothing like that,” my new friend replied hastily, “It’s just…it’s just your sweater. You’re wearing a red sweater.”
“No one wears red except Republicans.” He spat the word out as if it had shamed him to even say. I understood; it hurt me, too.
What hurt me more was that I’d been wearing my signature red hue for ages. No one had ever thought anything of it. I’m from DC, for goodness’ sakes, and I’ve covered fashion in the District, Maryland, New York, Canada, and all over, and never once has anyone ever looked at my cheery cherry and made any assumptions as to my political bent before that fated moment. But, alas, there it was. Worse, I started playing reels of newscasters in my mind on fast forward, and lo and behold blue, blue, blue, red, red, purple (Libertarian?), blue, blue…
He was right.
My beloved hometown had become so polarized that I now had to dress Progressive. Worse, I realized I already was, in my way. My sparkly Resistance pin was my entrée to politics-as-fashion-statement, but just on a smaller, more portable scale. This is the new reality in Trump’s America.
I went back for a conference about two weeks ago and didn’t make the same mistake twice. I went shopping first. I’ve never been a fan of wearing blue — it does nothing for my complexion — however, it did wonders to help me send the correct message.
I didn’t get pegged for a Republican once.
2 October, 2017
Since today’s almost over, I suppose I only have one more day until I get my new wheelchair, a snazzy, smooth-riding chariot of sleekness from Küschall, but the onramp to this exact moment hasn’t been without any potholes whatsoever. Allow me to explain.
Met my Invacare/Küschall rep, Kelly, at a Starbucks near my house. She had a sample for me to try, brochures, all the normal wheelchair-choosing-stuff you’d expect. I will throw out this little caveat emptor, however: Küschall is a relatively new brand to North America. As a Brand Ambassador, I’m specifically getting to try it out, demonstrate it at Expos and whatnots, and report back to both the Disability Community and Mission Control if I like it or not. That also means I figuratively “took one for the team” when I chose the colours of my ‘chair; my fabulously perky rep, though super helpful in a myriad of other ways, had absolutely zero clues as to what the majority of the finishes look like. That’s okay. It’s hard to describe something you have never actually seen, so, yeah, that’s going to happen.
However, that also means you may see me at the Abilities Expos in either a totally badass or, alas, a very confusing-looking chaise. It also means that people wanting a Küschall will now know what FOUR colours look like. Woo. To be fair, we can probably guess what “shiny black” looks like, so let’s say five.
Something tells me it’s going to lean a bit more towards the “badass” end of the scale than the “total head-scratcher” one, but I’ll know on Tuesday. I chose the colours to match my well-documented penchant for dark clothes, my collection of Christian Louboutin stilettos, and the curious predilection I have for finding myself stuffed into very new evening garb and heirloom spangly things.
18 October, 2016
The Femme Mistake
or Places to Go for “A Little Light Abortion-ing”?
What’s so infuriating (or maybe deeply saddening…yes…) is how many people are so inculcated, so deeply marinated, so hopelessly suffused with ideological tunnel-vision, that things like “facts,” “logic,” and even “compassion” are lost to them. They see places like Planned Parenthood and other women’s health clinics as “abortion clinics,” not realizing the HUGE menu of services they offer. PAP smears, STI tests, breast cancer exams, UTI meds, general women’s cancer screenings, prenatal care, access to obstetric care to HELP unborn babies (that would otherwise be deprived of prenatal vitamins, sonograms, and regular checkups), and a WEALTH of other community-accessible, life-saving, amazing care.
And “community accessibility” is a multi-faceted gem of a term when it comes to Planned Parenthood and many other women’s health clinics. Planned Parenthoods are some of THE most disability-accessible OB/GYNs out there, and make it a point to comply with the Americans with Disabilities Act (ADA), even though — somewhat ironically — many other smaller, more so-called “family-oriented” women’s doctors do not. Not only do they provide literature in various formats (digital, large-print, other languages) where other doctors don’t (even though they’re supposed to BY LAW), but I can also speak to their wheelchair accessibility *personally*.
While I have AMAZING health insurance through my spouse’s employer, doctors (and restaurants, hotels, streets, City Halls, etc…) in my area don’t seem to feel the need to comply with federal, state, or local laws that mandate accessibility for people with disabilities. Many are under the false perception that the ADA allows for “grandfathering” like other building codes, but in fact, the ADA does not have any such provision in it. Architectural “grandfathering” in the ADA is a rampant myth, even amongst individuals who really should know better, such as permitting officials, architects, and actual lawyers. Sadly, many others just don’t care.
As a result, there are few-to-no options in my area for women’s health that are fully ADA-compliant…except Planned Parenthood.
So, in spite of the fact that my insurance would cover the MOST expensive, the absolute BEST doctor in our city…that doctor is located in a building with a step, a tiny, inaccessible washroom, and beds that don’t lower for me to transfer independently. Instead, I go to Planned Parenthood, and THEY handle my regular exams and whatnot, plus deal with my #WheelchairDiva-specific issues…things like frequent UTIs, pressure sores, and infections from a less-than-stellar immune system. They do a great job, have terrific hours and availability, and even handle all of my disability-related problems with empathy and aplomb.
And I can honestly say that, to the best of my knowledge, I’ve never popped in for a “little light abortion-ing.”
28 June, 2016
My Body: My Diagnosis
I just had the most…well, I’m not quite sure…enlightening “discussion”? Frustrating? Infuriating? Eye-opening? Amusing in a sad, repulsive, perverse, demonstrative manner?
Yeah. I guess you could say that.
For those of you who who either know and/or follow my ranty typey-scribbles online, you’re probably already aware of two things about me: One, I am very proud of being a survivor…of working with groups who dedicate their time and resources to advocating for those of us with arthritis (in my case, Juvenile-Onset Poly OA, etc), those of us with MS (for anyone following the progression, I now have a sizeable T2 lesion in my brain, too), and, along with other autoimmune deficiencies, I broke my neck in 2011 at a Springhill Suites by Marriott because they didn’t feel like being ADA (Americans With Disabilities Act) compliant. I made videos post-op about my reconstructive surgery, and pretty much detailed my personal hell.
The other thing most of you know is that, while I share my story on MY TERMS, it’s just that: mine. It is about my body, my medical history…and involves my personal pain. As persons with disabilities, especially visually-observable disabilities, some TABIs (Temporarily Able-Bodied Individuals, since ability status can change at a moment’s notice or with age) seem to feel that, “If we can see it, we’re entitled to it.” As most of us know, in the medical world in the US, it takes serious legal documents to grant access to our records and diagnoses — specifically, the HIPAA. What I find so confounding, personally, is that those TABIs expect THEIR medical records to be sacrosanct…unless they sign a HIPAA waiver, of course…yet the mere existence of a PwD in their perceivable space means that individual’s private information is now open fodder to feed, soothe, and satiate their morbid curiosity.
And as I just discovered from an angry Twitter exchange, the sheer refusal to bow to his will and tell him everything he wanted to know about what “problem [I’m] suffering from,” my calm, evidence-heavy rebuttals were all dismissed as, “irrational,” that in spite of actual facts and retorts to his own claims, I’m not “intelligent,” and because he was obsessively hung up on knowing my diagnosis, tried resorting to name calling. These are the ACTUAL Tweets from a man who, when I tried to hyperbolically explain that I didn’t ask him if he was circumcised (which usually works in person), this dude starts telling me alllll about his penis–even after I told him I really did NOT want to know about it:
And, YES!!! In case you missed it, he DID imply that because I’m “attractive” and “intelligent,” that somehow means I couldn’t/shouldn’t have a disability. Either that, or he was trying to say it made it more of a “pity”…or…maybe he was using that as his “proof”? As in, “You are ‘intelligent’ and ‘attractive’ to me, ergo it’s impossible you’re ACTUALLY dealing with disabilities, because what does that mean ABOUT ME?!?”
Considering the penis discussion, I’m going with #3. (He offered to tell me…and the Twitterverse…its “size”…I’m guessing with a very, VERY small ruler.)
10 December, 2015
So, I ran across this piece of tripe on TheHill.com, written by Rep. Ted Poe (R – TX) to introduce his asinine bill, the “ADA Education and Reform Act of 2015,” which is meant to give us even LESS traction to increase ADA compliance in Title III establishments. Here’s an excerpt:
“This is why I am introducing the ADA Education and Reform Act of 2015, H.R. 3765; legislation that will provide business owners with an opportunity to remedy alleged ADA infractions before being saddled within legal fees. Business owners will have a 120-day window within which to make any necessary public accommodation corrections and updates to their businesses. If the business owner fails to correct the infractions, the plaintiff retains all of their rights to pursue legal action under the ADA. This legislation restores the purpose of the ADA: to provide access and accommodation to disabled Americans, not to fatten the wallets of ADA trolls.”
Sooooo…anyone who’s fed up with the total inertia and complete LACK of enforcement of our MAJOR CIVIL RIGHTS LAW is a “troll”? Well, why not just flail your arms around and mock us outright, Rep. Poe? Or make references to paraplegics not being able to “buy pants,” like your fellow GOP politician, Mr. Trump? Anyway, here was my response. (Sorry…I got a bit heated…)
Dear Rep. Poe,
Having read many complaints similar to yours about lawful complaints of ADA non-compliance that you and yours have dubbed, “Drive-By Lawsuits,” I cannot sit idly by and remain silent any longer. Your argument is clearly coming from a place where you enjoy the privilege of walking into any establishment you please, never wondering if there’s a washroom facility that you are able to use, most likely never being faced with suddenly having to travel down the sides of dangerous city streets — hearing each honk because you’re slowing down traffic, and being terrified at that *one* driver who DOESN’T slow down — all because one single curb wasn’t made up to ADA compliance.
I’m guessing that you can sit anywhere you like on the Acela. We wheelchair users are allotted a few scant spaces, which, despite the signage, travellers fill up with their luggage and belongings, as if to say, “None of *them* are getting on here, anyway.” And when I do embark, the hateful glares and protests I get when I require the staff to remove the items and make a place for my wheelchair scream to me, loud and clearly, “My luggage is more important than that…that…woman in a *wheelchair*!” Or how about the fact that I can enter almost any washroom in America, at any given time, and no matter HOW many stalls, and even if every single OTHER one is empty, the wheelchair stall will be occupied. Not by a fellow Person with a Disability (PWD), but by someone selfish enough to think we, again, don’t exist, or go out, or matter — or that this ONE stall is all we have…while they have their choice of four, or five, or a dozen more.
And now you think that Americans are so unintelligent, so dim, that a Quarter-Century PLUS is insufficient to learn about the Americans with Disabilities Act? With all due respect, Ignorance of the Law is no Excuse, Sir. If this was a brand-new law, I would be the first to agree with you, but it’s over twenty-five years old, and with each modification has come grace periods to adjust, learn, and implement. The initial ADA was signed into law in July of 1990, but it couldn’t be enforced for a *very* long time after. Why? To give businesses, programs, municipalities, and employers time to do *EXACTLY* what your proposed bill would do…except for one thing: that grace period made sense 25 years ago. Now it’s just ridiculous.
What if, after the decision of Loving v. Virginia, some employers STILL refused to recognize marriages between people of different races…*twenty-five years later*? Or there were segregated “Whites Only” drinking fountains at parks in 1989? Or even whole segregated establishments in 1989 — the very year before the ADA was signed? Because, Sir, that is EXACTLY what is going on here…a full quarter-century after a MAJOR CIVIL RIGHTS LAW was signed by our President, there’s still widespread ignorance and non-compliance of the ADA.
And the ADA is special for another reason…it isn’t just a blanket law that can be up for debate, interpretation, or analysis: it is LITERAL. Each and every element in it — things YOU might find to be unimportant minutiae — are actually plotted, planned, debated, measured, REmeasured, polled, and all intrinsically required for the independence, good, and even survival and well-being, of the whole of the Disabled Community. For instance: I have a slender wheelchair. My wheelchair fits places most *STANDARD* ADA-compliant wheelchairs cannot, and definitely where power wheelchairs cannot. If I owned a store, I would NOT make the store to meet *my* needs — I would make it to the standards set forth in the Americans with Disabilities Act Accessibility Guidelines. They’re right online, where anybody and everybody can find them.
Then again, I also had a copy of the ADA in 1990…my father simply called downtown and picked up one from the DOJ (though they also mailed them to people who requested them back then). Not exactly difficult.
So, if you want people to have a “120 day” grace period, I think you already got it; in fact, you’ve gotten a quarter-century grace period for business owners, and if they haven’t figured it out by now…
“Ignorantia juris non excusat.”
Angela “A.J.” Bray
(I didn’t even get in to the fact that 99% of hotels are sooooooo not ADA compliant, and that nothing, I repeat NOTHING is getting done in this country without some sort of hit to the wallet, be it from lawsuits, fines, or whatnot. Almost no one is just “obeying the law” anymore when it comes to the ADA. It’s going to sake *SERIOUS* reform the *other* way — as in, making enforcement MORE stringent, not LESS — for our community to really resume our quest for equality. This bill, if passed, would be so deleterious and injurious to our community, that it really can’t be put into words…even for the purpose of blogging.
12 December, 2015
The next time someone starts trying to argue (what I consider to be) basic human rights in America, and they bring out the old, “That’s not what the Founding Fathers meant to happen! They never meant for all these changes!” and whatnot, I’m just going to cite this piece of beauty:
“… that laws and institutions must go hand in hand with the progress of the human mind. As that becomes more developed, more enlightened, as new discoveries are made, new truths disclosed, and manners and opinions change with the change of circumstances, institutions must advance also, and keep pace with the times. We might as well require a man to wear still the coat which fitted him when a boy, as civilized society to remain ever under the regimen of their barbarous ancestors.“
— Thomas Jefferson, 12 July, 1816
Because, yeah…that’s pretty much exactly what they meant to happen.