Let's all pretend that today's Friday and I didn't forget about my blog. I have a good reason, I swear!
Tuesday, April 26, 2011
Yesterday, I read a post by Trisha Torrey over at About.com's Patient Empowerment area. It was about the possibility of a convicted child rapist named Kenneth Pike being considered for heart transplant. She presented the issues and asked for readers opinions. This is my comment:
"One of the reasons I am a monthly support of Doctors without Borders is that they provide medical care without judgment. The person who needs it most is the person who receives the care and it doesn't matter if they are a child or a Janjaweed.
Do I like that a convicted child rapist is getting a heart transplant? No. But I don't believe that the organ transplant system should get involved in moral judgments about who deserves a transplant in any way other than the medical. Once you start judging whether someone is a "good enough person" to get an organ, it's a slippery slope. Who decides? By whose moral standards do we make this decision? There was a case several years ago of a young girl in Oklahoma who needed a kidney transplant - she met all the criteria in terms of health, ability to take antirejection meds, etc., but was ultimately denied. The only reason that appeared to have impacted that position was the fact that she had Down’s syndrome. Apparently, somebody who did not have an intellectual disability was deemed more "worthy" of a transplant. Was that right? Absolutely not. And if that wasn't right, then neither is denying this man a heart transplant.
Beyond that, not giving him a transplant is a death sentence, which means he might as well have received the death penalty for his crime. Is his crime punishable by the death penalty? No, it isn't. And therefore, the legal problems with denying him a transplant are huge.
I still don't like the idea, but I am an organ donor and I believe UNOS should make this decision the same way Doctors without Borders makes theirs: purely based on medical need."
Today's update mentions that Pike has decided against the transplant and makes the argument that since 90% of commenters were violently against him being even considered for the procedure, it might be time for the system to award transplants considering somebody's "goodness," basing decisions on some sort of point system. Not surprisingly, I don't agree, in part due to the reasons I've already mentioned - I don't think these kind of decisions should be based on emotion or morals beyond medical ethics. It means we get pushed up against very difficult situations and positions, but if we start awarding medical care based on someone's idea of moral fiber and character (again, who chooses the criteria?), it's a slippery slope right down into injustice. Medical decisions should not be made by popularity poll. Ideas of what is right/moral change - just because the majority of people agree with a certain position doesn't make it right. Think about this example: at the time when the law prohibiting interracial marriage in the US was abolished, 70% of the population was against interracial marriage.
And then there's another wrinkle on this point system. Where would it leave people with disabilities? For most of us, accumulating any kind of points might be difficult due to physical or intellectual limitations and social barriers. If transplants were to be awarded as a sort of reward for good behavior, the kind of behavior that can be measured by points assigned on a form, it could end up to some sort of eugenics project, couldn't it?
There's a slippery slope here and it goes pretty fast downhill.
Monday, April 25, 2011
It has been brought to my attention that I'm showing. No, not that kind of showing! What I'm showing is my mood. One friend mentioned that my online posting sseem to indicate I was frustrated with my limits and another friend asked me if I were okay, because - and I quote – I’d "been whining online." I can ignore one person mentioning it, but two? Stress on no stress, I appear to need an attitude adjustment. Therefore, I'm starting this week with a post about what makes me happy.
Allergies. Because it means that spring is here.
Watching TV with a purring Lucy on my lap.
Dinner on Boyfriend Weekends. One of my favourite meals and my only contribution is to enjoy it.
Eating dinner while it's still light out. It means winter is on its way out.
A good friend volunteering to do my taxes when I, as usual, hit a wall. I keep thinking that this year, I'll figure out how to do it myself, but I never do. Thankfully, I have backup.
Spending the weekend doing nothing I had to do, just meandering through the neighbourhood in the sunshine.
Noticing afterwards that for the first time in almost 7 months, my skin smelled like sunshine and fresh air.
Watching Examined Life and keep having to stop the DVD because it sparked deep and interesting conversation. Watch it and stretch your mind.
Having a terrific Writing Buddy. Thanks for making me a better writer.
Humira. Sometimes, I get lost in my life and The List and forget for a couple of days, but I can do that only because of Humira.
Watching Boston Rob play Survivor. A truly delightful experience.
Having friends who notice when I whine online and tell me so I can snap out of it.
Waking up each day with the kind of energy and low pain levels that means I can work hard enough to be stressed out.
What makes you happy?
Monday, April 18, 2011
So. There are these two rather large projects that consume my time at the moment. One is happening at MyRACentral. We have two weeks left before it all launches and in the grand tradition of things that sound like a really good idea when you're safely ensconced in the dead of winter and dealing only in theoreticals, it grew. And then there's another rather large project of my own which I naturally decided should come to fruition in the same month (disability? Energy issues? Me?? Pshaw!). At the time, it all seemed completely doable, but the second project may be delayed. Okay, who am I kidding? It will be delayed. That is, unless I figure out how to clone myself, but that would be a third project and I just don't have the time.
I wouldn't say I've hit the point where I am in a constant state of hysterics quite yet, although I am walking (metaphorically) around with a pervasive and persistent feeling as if I've forgotten something. I had the tornado dream five nights ago, as I always do when I feel overwhelmed and life is out of control and that was followed two days later by a tsunami dream. Because my brain apparently has never seen a disaster it didn't like in its efforts to persuade me that perhaps I'm in over my head and ought to slow down a little. Y‘know, get some prospective and a bit of a grip. And I would, really I would, if only I had the time.
I'm beginning to see a theme developing…
And so, I flit. Bounce from task to task, alighting only long enough to make me feel as if something got done, but never enough to call it actually finished before I flit on to something else. Repeat ad nauseam. And yes, I do realize that this just makes me more stressed out and it might be an idea to hunker down and finish some of the endless tasks that go into aforementioned to large projects, but it's impossible, because staying too long on any one task makes me really anxious.
Not surprisingly, my body has just about had enough of being pushed and Saturday morning, I woke up feeling as if I'd been run over by a truck. It didn't help that it was raining with what can only be described as biblical determination, but I dragged myself into the computer anyway. To discover that my Glidepoint (a touchpad mouse equivalent) had finally given up the ghost, after 15 faithful years of service. So I wandered off, sorely tempted to not install the backup for a day or so because there was such bliss in having a computer that was effectively unusable. The thought of spending the weekend watching movies and disappearing into a good book was the kind of tempting that normally accompanies a representative of Hades urging you to sign a document that deals with the transfer of ownership of your soul.
I love my job, but I think I need a vacation. June. Just hold on until June.
Unfortunately, I have a really good work ethic, so after a couple of hours, I installed my Smart Cat Pro and grumbled my way through the first hour. I don't like change and this was different than what I'd been using for the past 15 years and it was just Wrong. That is, until I programmed it properly, adjusting various settings and discovered the beauty that is programmable hotlinks. Because those four little fields over on the left side of the touchpad? Can be programmed to do whatever you want. Including double-clicking, which I naturally took advantage of and now never need to double-click ever again. What I was disparaging in the early afternoon, I fell madly in love with by late afternoon.
Equally unfortunately, this enabled me to go back to work, every bit of me kicking and screaming and it was only the thought of the unmanageable List the size of the Titanic and just as accident prone that kept me chained to my desk. Because if I didn't work, Monday was not going to be Any Fun At All.
It's all in the interest of keeping the full-on hysterics at bay. I figure it's going to happen eventually, most likely around the last two days of April, but if I can hold off until then, I'll consider it a success.
Thursday, April 14, 2011
Today is Lucy’s Gotcha Day. Since I don't know her birthday, I decided to celebrate an anniversary of her coming home instead. Which naturally means that a post is due.
The name I chose for this wee one is good, fits her perfectly, but there are times where I think that if I hadn't found that name, I might've called her Charlie instead and this is why
Yes, that is how her legs look, like the mutant offspring between a ballet dancer and Charlie Chaplin. Not surprisingly, she also has an abundance of nicknames, including monkey girl, fuzzbutt, noodle, my little turtledove, Lucy Magoo, Lucy Goo and the list goes on. The turtledove moniker refers to one of her many sounds, this one sounded like a dove cooing. She has many other ways of talking, including variations of chirrups, a melodious yodel when she wants to play, a positive plethora of squeals, chirrups and trills when there’s food involved, as well as a vocalization that I have named a merp. This one happens throughout the day, when she jumps up on my lap, when she jumps down from the bed or the couch, when she wants to have a chat and it can best be described as sounding like merp. When she sleeps - and this cat sleeps harder than any one, human or animal, I've ever known - she'll wake up occasionally squealing madly, which is a sign that I have to come settle her. I don't know if she's dreaming, checking that I'm still here or complaining that she's awake.
Lucy is smart. At times, a scary kind of smart and I am just happy that she doesn't have opposable thumbs. I have a theory that she watches how people do things and then tries to do the same. In this way, she has moved a bag of cat food out, removed the clip, unrolled the bag to gain access to food and she’s figured out how to tuck herself into my bed, so she lies with her head on my pillow, covered properly with a blanket. She knows how to turn on the tap in the bathroom sink and moves bucket so she can stare fixedly at the baseboard and learns everything incredibly quickly. And then there are the moments where she is beyond dimwitted and oblivious, in an utterly charming way.
She is the sweetest, most good-natured animal I have ever met and you can do anything to her. Play bongo drums on her flank and she's ecstatic because it means she's being touched, try to pull her by the tail and all she focuses on is the ham in front of her and a year in, she has never been even slightly irritated. She loves me in a way no other pet ever has.- I am very obviously her mommy, which is not a name I ever thought I‘d use about myself in the context of a pet, but there's nothing for it. I'm her mommy. She spends a lot of time on my lap, runs to me if she's startled, needs a cuddle after the evil David has cut her nails and every now and again, if there is a strange sound in the hallway, she will place himself between me and front door, a deep rumble coming from her throat. Yep. Part Doberman.
Lucy has a passion for dried bread products, often stealing my morning toast before I get to it and if I had as much as think of a cracker, she's on my lap ready to gnaw away at it. She also enjoys licking plastic, chewing chip bags (doesn't care for the chips at all - Mojo, who’d lose all her manners for potato chips, would be disgusted at her lack of priorities) and above all else, chewing ziplocks. I thought I was really good at cat proofing, but it turns out that Mojo was an exceptionally well behaved, respectful and careful feline. Or maybe it's Lucy. Part of the general mayhem around my place these days is due to her having not one ounce of elegance, grace or dignity, which means in the normal course of her moving around - and she moves around a lot - her clumsiness has casualties. And then there's her level of curiosity pushes the boundaries of cat proofing well into an Olympic sport. For instance, it had never occurred to me that straws could be a cat toy until Lucy started pulling the straws out of my drinks
and then of course there are the times when she carefully (about the only time she's careful) and inevitably pushes things off various surfaces when she thinks I should be paying attention to her. One of these surfaces was my bedside table and the object to push off was a cup of water. Into my bed. In the middle of the night. With hours still to go before the attendant comes in the morning to help me get up. Thus giving me a taste of what decrepit old age and incontinence will feel like. I have therefore given Lucy a superhero name: Destructo Lass. All we need now is a cape.
She's an excellent writer’s cat, often jumping up on my desk when I'm working to be part of the activities. Or more often, to interrupt the activities. She'll walk on my keyboard (which at times results in her starting various programs), stand on the keyboard blocking the monitor, purring so hard the desk vibrates, throw herself down across a keyboard to get her belly rubbed and it's better than a timer program to get me to take a break and rest my shoulders while I commune with the cat. If I don't pay enough attention, she'll turn off my computer.
The throwing herself down on various surfaces also happens when my mother comes to visit her grandcat. When Lucy is very happy - and she always is when grandma’s here – she floofs her tail (her hair is too straight to fluff, so her version offered is more of a floofing), then she gets her front down, tucks her head to one side and the next step is usually throwing herself down on the surface (called timbering, because it's with as inevitable a force as a tree falling), rolling on the back to get her belly rubbed. It's irresistible.
Lucy makes me laugh out loud many times a day, has me saying her name with that exasperated tone that only the parent of a particularly accident prone/destructive child has and brings a ridiculously sappy smile on my face when she does something endearing. Which is all the time. We are very, very happy together
Wednesday, April 13, 2011
A friend sent me an e-mail with an invitation. He has the possibility of going to a gala and since it's for disability related thing, asked if I wanted to come along. This is a transcription of the next few seconds in my brain:
I don't have it anything in my wardrobe that is remotely appropriate for an event qualifying as a Gala
I have a month to find something Gala-worthy
I haven't been out to something fancy in so long I don't remember how to act
Or how to dress
Would this mean I'd have to wear makeup?
The last fancy thing I attended was pre-big flare, a wedding in 2002. That's nine years ago and it wasn't until yesterday that I realized the lack of fancy in my life. Not that there was a lot of it before, but some, at least a couple of times a year and then the flare ate my life.
Life is made up of many things, of friends, work, family, groceries, paying your bills and every now and again, it includes a big celebration, the kind you dress up for and feel a bit like a different person for a night. And not having that, not being able to do that, sets your experience of life apart, shrinks it into something not quite "normal." Cuts off a part of your life.
I started Enbrel in 2005, had a bit of a derailment due to side effects and then Humira came along in 2007. Since then, my life has returned, gradually, slowly, expanding in big ways and small and I thought that I was, if not done with the growth, then touching all the areas I would continue to explore. And then the Gala came along and once more, my life took a breath and expanded into something that was new again.
And it makes me wonder yet again how much farther it's possible to go.
Monday, April 11, 2011
This weekend, we gathered a bunch of people for a potluck Spring party. A few moments:
John holding up a wall and I can see the rockstar from his younger days
I'd discovered Sunniebunniezz, an excellent source of handpupoets and many other treasure and got a pterodactyl for Liam. Naturally named Pteri and here seen perched on Janet's head
Not entirely in focus, but the best photo I've ever taken of Scott
Aryka's just over a year old and so cute you want to bite her cheeks
Vanessa and Morgan have some girl talk (Morgan's butterfly clips from Kate's Cottage)
What's a Spring party without a trip to the playground?
Liam is in heave on that slide
As is Ken...
Friday, April 08, 2011
Interesting things have happened and I feel compelled to share. For those of you who haven't read the original post, as small recap. A wonderful recreational area called Sugar Beach opened last summer in my neck of the woods and about three weeks ago, I went to check it out. Only to discover that there was no accessible path to get there (details with photos on the original post). I planned to contact Christopher Hume, the Toronto Star columnist who writes about architecture and urban affairs and who’s raved about Sugar Beach. I did so with an invitation to join me for a trek down to the area to see it from a wheelchair point of view.
Christopher Hume never wrote me back, which is a pity because this turned out to be a great story. While I was waiting (in vain) for Mr. Hume to contact me, I got an e-mail from someone entirely unexpected. Bruce Sudds, the Communications Manager for Waterfront Toronto, contacted me the day after that the post was published. He expressed regret that I'd had trouble getting to Sugar Beach and let me know that there were plans to upgrade in the area later this year and that in a few years, the revitalization project would vastly improve the area itself, including wider sidewalks, etc. He also let me know that Sugar Beach itself met the City of Toronto accessibility standards and that waterfront Toronto had included an accessibility consultant in the design process.
I very much liked that e-mail, but did write back and pointed out a few things - in an entirely polite and professional manner - including that any accessibility consultant worth their salt would have included an accessible path to the area. I did not suggest that they hire me, but should they want a consultation from someone who knows firsthand what accessibility is (and who used to work in the field), I'm certainly open to the idea. A-hem. Anyway, back to my chat with Bruce! As invited, I asked for more details about the planned upgrades.
After I’d sent that e-mail, I went to a Community Planning Meeting co-hosted by Pam McConnell, my City Councillor and Glen Murray, the MPP (Member of Provincial Parliament) for my riding. It was a terrific meeting and afterwards, I had a fit of advocaciousness and decided to have a chat with my hosts about Sugar Beach, with excellent results. Since curb cuts, etc. are in the City’s area of responsibility, Pam McConnell asked me to send her an e-mail giving her more details about the problem and said she’d pass it on to the appropriate department. I promptly did the next day, but am not sure what's happening with it - left a message with her office asking for an update earlier this week.
Yesterday, I got another e-mail from Bruce Sudds and this is where it gets really cool. Bruce shared a number of things with me:
- This spring, Waterfront Toronto will be installing sanitary sewers on the east side of Jarvis Street and Queens Quay Boulevard. As part of this project they will be putting curb cuts in the sidewalk
- Bruce will write to the City requesting curb cuts on the west side of that intersection. Between him and Councillor McConnell asking, I hope this happens by the end of April so people with disabilities can start using the area
- The gravel area between the sidewalk and Sugar Beach will be paved sometime in the next four months. I urged them to do this sooner rather than later so that residents who use mobility aids can enjoy the area during the summer of 2011. Keep your fingers crossed!
- In the next several weeks, they will be "installing a ramp leading to a platform that will be 4 metres by 4 metres beneath one of the pink umbrellas." This will be placed "at the same level as the sand" and is "done to ensure people in manual or electric chairs can enjoy Canada’s Sugar Beach."
Good news indeed.
Thursday, April 07, 2011
This week on MyRACentral, I think about acceptance, the if onlys and a few what ifs...
"What would you wish for if there were no limits? What would you do if you found an old lamp at the flea market and it was the one with the genie in it?"
You can read the rest of the post here.
Monday, April 04, 2011
I've been struggling with whether to write this post. In one way, it's a response to a comment and I don't want the person who left the comment to feel as if I'm picking a fight. What am I talking about? Well, it’s like this…
A few weeks ago I wrote a post called The Path to Sugar Beach about discovering that there wasn’t an accessible path to a new recreational area in Toronto. I got a comment from someone named Mike who is new to the blog - be gentle with him, please - and lives in my area telling me about an alternate route that I hadn't realized existed (which although terrific, it doesn't negate the point that there were no curb cuts close to the entrance). Based on the existence of this alternate route and the fact that Sugar Beach itself is probably accessible, Mike thought that I and other commenters who expressed frustration about inaccessibility were perhaps "overly sensitive". I respectfully disagree and am going to use this as a jumping off point to discuss discrimination against people with disabilities. And Mike? None of this is particularly directed at you, it's a larger argument about a societal phenomenon.
When you mention the D-word (discrimination) in connection with people with disabilities you get the funniest reactions. People sort of wince, they cringe, they even get angry and \ question your conclusions. It's as if they have accepted the concept of discrimination against other groups like racial minorities, women and aboriginal people, but there's a huge stumbling block when presented with the concept related to disability. Is it because us cripples are usually viewed with pity? Is it that assumption that we are not quite a whole person - or half a person, as Jerry Lewis so charmingly refers to us (thanks to Beth for the link)? Is it that weird tendency to demand gratitude from us when granted a service, a privilege, access, whatever? Is it that we are so firmly wedged into the niche of "pitiful sick people" that the concept of us having equal rights is so difficult to comprehend and therefore it it’s impossible to conceive that we can be discriminated against? I don't know and I don't get it. I especially don't get the anger. However, I do get why those of us who live with disabilities get angry.
- My family and I were checked into a fancy hotel in Europe that had assured us they were wheelchair accessible. The entire time we stayed there, I entered and exited the hotel off the loading dock and used the freight elevator.
- On another trip, we booked tickets with British Airways and were surprised when they required that I produce a doctor’s note allowing me to travel (this was a long time ago, they may have smartened up by now).
- I was part of the wedding party of someone I love a lot and they had had a very specific conversation with the Hall regarding accessibility before reserving a date and handing over money. At the time of booking, the washrooms were not accessible, but they assured the bride-to-be that at the time of her wedding a year and a half later, they would be. They weren't. When I needed to pee, it happened on a commode put in the Manager’s office, which was later emptied by a gentleman in a morning suit who left the door wide open so all the other guests could see what was happening.
- When I applied to graduate school, I was asked to come in for an interview. We discussed what it meant to go to graduate school, and I was asked questions such as how I'd manage lunch, given that there was no cafeteria in the building. When I started classes, I discovered that none of the able-bodied students had been interviewed. Or asked how they were going to manage lunch.
I have this handy test to check whether a situation is Wrong. Substitute another group, such as women or racial minorities instead of disabled and if it would seem reasonable that such a group would have issues with the situation in question, it's also discrimination when applied to people with disabilities. Because we wouldn't expect a woman or someone who is a racial minority to suck up entering a fancy hotel by the freight elevator, be required to ask their doctor if they are allowed to travel - and no, that one isn't reasonable, because a) having a disability does not mean you’re sick; and b) people who have invisible medical conditions are not required to do so - to pee in a pot, to be interviewed for access to graduate school when men aren't or, come to think of it, to take the long route to a recreational area when white people can get there in 30 seconds.
Disability is a protected ground in pretty much all human rights legislation. Our local one, the Ontario Human Rights Code, states that "[e]very person has a right to equal treatment with respect to services, goods and facilities, without discrimination because of race, ancestry, place of origin, colour, ethnic origin, citizenship, creed, sex, sexual orientation, age, marital status, family status or disability." Equality isn't just about getting there, it's also about getting there in a dignified manner. And it's not equal or dignified to pee in a pot, it's not equal or dignified to enter off the loading dock and it is not equal or dignified to have to take the long way when everyone else do not.
I have another little test that I would very much like for most able-bodied people to try. Rent a wheelchair for a weekend and every time you leave your house, do so seated (most residences in North America are not accessible, so you get a pass for when you're at home). Take a walk - a conceptual walk, i.e. move about in the fresh air for enjoyment, not actual walking - in your neighbourhood, go downtown to a large mall, check out a museum, visit some friends (you're not allowed out of the chair in their home), etc. You get the point. Participate in your community. The only times you may leave the wheelchair is when you're in a public bathroom and you have to use the accessible stall. It's an interesting experiment, one that still has a built-in escape hatch, but it starts to give you a sense of what it's like. From people who've tried it, I've heard reports of frustration, a newfound awareness of steps and other barriers and one person told me that nobody has eye contact with you (I never knew that people, strangers, had eye contact with each other in public). If more people tried this test, maybe it wouldn't be such an uphill battle to implement universal design. And maybe the D-word would be more accepted so we could get beyond talking about whether discrimination against people with disabilities exists and start eliminating it.
Friday, April 01, 2011
I was at the grocery store, picking up a few things, moving from the back of the store to the front because I'm compulsively organized. The last item I needed before heading for the checkout was a loaf of bread and I headed to the ice cream and bread products aisle. Once there, I positioned myself parallel to the shelf, reaching out over the left armrest on my wheelchair and trying to get a solid grip on a loaf of bread so I could get it off the shelf. It wasn't going well - it was just a couple of centimeters too far, I could touch the package, but getting it from the shelf to my lap was a no go.
I sat there for a while, struggling with a loaf of bread - that's not a sentence you write every day - and several able-bodied people went by without offering to help. Feeling more and more invisible, I also felt more and more frustrated. And then this rather elderly man who clearly had some significant health issues came tottering up, took the loaf of bread and handed it to me. He smiled and said "we have to help each other out."
It was a small moment of grace, almost cinematic in how our surroundings became hushed and fuzzy, this moment between two people all that existed. Two invisible people banding together.