Thursday, January 31, 2008

Invisible disabilities

Today I spoke at length to a friend I had not seen in a while. She has severe spine problems and has had multiple surgeries; the last surgery has afforded her a little pain relief, thank goodness. I see and acknowledge her pain. I hope she knows that.

People seem to think I'm in more pain now that they see the scooter--sometimes, yes, but the duration is much shorter with the scooter and less intense, though I push myself to the usual high pain level because of the thrill of getting out. It is the same disability as last week, only people's perceptions immediately changed.

As I cross the threshold from invisibly disabled to visibly disabled, I am reminded how difficult it is to negotiate the world and get needed help when the disability is invisible; now I have no problem getting help. Ironically, my pain is less now than it was before using the scooter, but only now am I getting some of the accommodations that I needed several years ago, before I had the scooter. I needed them more then than I do now. I'd like to continue to advocate for those who have invisible disabilities and medical problems because it is so often difficult to get the help, support, and understanding needed. To my friend, I see your pain even if others don't. It's not less than mine.

I know how easy it is for me, even when walking, to judge other people for using disability spaces, as they may in turn be judging me. But I have met a number of people I'd never had guessed were disabled--young, healty looking people. One had referred to herself as "gimpy," and I inwardly felt angry, insulted; only much later did I find out that she'd been shot and left for dead, and because of resulting medical problems is unable to work. Another woman in a Starbuck's, as her talkative retired parents told me, had severe spine pain and was on the phone with the surgeon's office. She, too, was young and energetic looking, beautiful, but in terrible pain that left her incapacitated much of the time. My new worry is that my husband will get yelled at for parking in disability spaces when he picks me up. He never uses it on his own, and we don't use it the rare times when I don't need it, even if parking is scarce, because someone may need it more. Please, guys, let's not judge, let's hope that people are using the parking places as they're supposed to.

Anyway, after a difficult roller coaster of a week and a half, I am mentally thanking all the people who make life easier and so normal by their friendship and good human spirit. We talk about disability--me using a scooter would be an elephant in the room otherwise--but really, not so much is different. Their compassion (not pity! they don't show that) means so much. That in contrast to being reprimanded for not knowing whom to go to with accommodation requests (the policies are unclear and unwritten, and I've asked many times that they be clarified and written). Despite some of the problems being out in the world, I have such renewed and absolute faith in my friends and almost all of my coworkers, who are so completely cool.

Some of the changes at Very Big Workplace had been requested by other PWDs for ten to fifteen years--they had been turned down because of lack of money, and it would have been a poor job move to protest. Once I knew it was not just my needs, I felt more strongly about advocating for the changes. With a 70% unemployment rate for PWDs, making waves is difficult. But I've made them, and a few people are upset about that. So I have to say it really touched my heart when someone at work wrote me:
"I think you ought to take a photo of the new asphalt transitions and frame it! They are beautiful bec. they represent so much of your heart and caring to me -- they change [Very Big Workplace] for the better."

What Very Big Workplace (VBW) does not realize is that employees are not required to notify them that they are in violation of ADA. Being a reasonable person, I have notified them multiple times about certain big issues. But I don't have to. I could have just filed a lawsuit without notification or without following up after. I'm not sure they understand that.

It's been a detriment to my own work (and a few people's perceptions of me) to advocate for these changes, but I hope this kind of thing benefits many people, that the requisition process is made clearer, and that it paves the way (with smoother asphalt) for people who make future requests. I know a few wheelchair users immediately turned down VBW while trying to navigate during a visit.

I hate catheters and Sjogren's sucks

Lots of selfish worrying right now. Tuesday I have to get a CMG (urine volumetry), which involves drinking 20 ounces an hour before peeing into a special device and then having your bladder pumped full of liquid until it (in my case) leaks. The alternative is to get a myelogram (dye into spine) to see if my herniation is pressing on the spine more. The gyn said she can tell from this test whether the problem is neurological or not. If it is neurological, fun and games involving spinal fluid and dye and needles (nightmarish to me). If not, she recommends having my bladder tacked up during the recommended ablation or hysterectomy. It's apparently not stress incontinence and happens when I'm just sitting or conversing, fortunately not in large quantity. It's been happening the past six weeks or more. Thank goodness I saw her before the spine doctor since her tests are less expensive and less invasive.

I'm not sure I can make it with 20 ounces of fluid in me for an hour (seriously, drinking too much water is bad if I'm away from home, and I go to the restroom often already), and how I'll make the drive home without stopping every two minutes. And catheters=torture. I don't like being messed with, don't like medical instruments or tools or whatever poked in me, I feel nervous and upset already. She, by the way, the gynecologist, is way better than the urologist who recommended this umm, a year and a half ago on a second office visit, along with cystoscopy (though for infections, not leakage). When I arrived, the nurse told me that's why I was having done; uhh, no, not without advance notice. That's not right and they could have told me at the last visit. Plus it was really bad timing. The current gyn. says the urologist should have it done if she thinks it's a piece of cake, that from her own experience it's not, and that I shouldn't plan to do anything else that evening. The only time I've been able to deal with a catheter was after my son was born, when I was physically unable to urinate and felt like I'd explode. Then the catheter was a relief--no one was pumping liquids into me.

I've started having hemorrhagic periods again, thus the recommended endometrial ablation or hysterectomy, though hysterectomy worries me since that will increase bone loss. I have a script for the pill (3 months, no period) if the next one's as bad, so that I can get through the next few months. One thing I've found is that NSAIDS increase the frequency (as in every two weeks) and amount of my periods--nonsensical, but true. Maybe getting off them will work some wonder cure, but I caved yesterday and took two after three weeks without because I was working too slow and could not function.

I can't deal with this and all the orthopedic/rheumatologic issues at the same time--I have to work triage with myself.

And...I could stand in front of the mirror all day putting eye drops in my eyes. The eye doctor says I'm not producing tears, gave me a list of dramatic measures to take to avoid damage. It also gets difficult and awkward to present info when your lips stick to your teeth from lack of saliva. I feel dessicated. I hope much of this is from dry winter air and not Sjogren's, as the rheumatologist and eye doctor suggested (which goes along with the other medical problems I have). I really didn't want to deal with that, too. We keep the humidifier running, and I'm boiling pots of water.

The PT yesterday was very understanding how little I've been keeping up with exercises the past week and a half due to other medical issues and still working on minivan (today!), lift, scooter, insurance, doctor, accessibility issues, etc. That surprised me--I'm used to being lectured by medical professionals.

Tuesday, January 29, 2008

Interesting factoids/stress relief

I found out that the restroom doors at work weigh 160 lbs each (floor to high ceiling)! The maintenance manager said he couldn't even open one of them, though the women have been. He hadn't tried it before. Whoever constructed the building had a really convoluted architectural vision. The hallways are confusing, Escheresque, and have been known to leave new people (well, me once, but others too) in tears. The bizarre pre-ADA flooring is bumpy, loud, echoes, and creates problems for people moving chairs or equipment.

Just found out I am relieved from one responsibility tomorrow, huge relief. Not a huge responsibility for most people, but an issue in terms of transportation, timing, pain, and two deadlines I'm trying to meet. Plus it's difficult for me to get out of the house twice in a day, especially when one of those errands is two hours of PT; easier to combine errands and trips. Whew. Breath coming back.

Stress and stereotypes

I am so stressed by far more than I can handle in the next few days (really, and people expecting even more) that I can't even eat or take a deep breath or cry. It's like there's a black hole in my middle and my spirit collapsing in on itself. My body can't keep up this pace. This is my five--no, ten--minute break.

My son brought home a sheet about what his class is working on in school. In language arts, the students will be reading a biography of Helen Keller. Initial impression: great. Then I read the synopsis:
A biography of the blind and deaf woman who rose above her physical disabilities to international renown and who helped other handicapped persons to live fuller lives.

Placing the adjectives first means that students are learning to define people by their disabilities. And of course the term "handicap" derives from people holding out their caps for charity. Did she really "overcome" or "rise above" her disabilities; didn't she still have them? And why is the implication that people with disabilities don't have full lives, especially before someone else comes to show them the way? Personally, I've found accessibility legislation, conventional and complementary medicine, and individual, nonstereotyping people most help me live a full life, though I consider myself to have a full life anyway.

Why are disabled people only seen as acceptable when they overcome a disability?

I am afraid if I protest, even gently, that I'm just going to taken as the resident bitch mother. But I'm sick of the stereotypes. Any suggestions are welcome. I can certainly phrase things gently, but sometimes saying anything at all upsets people.

As I've learned at work--a gentle reminder, complete with smiley face, asking people to move back furniture when they're done (so I'm not, for example, blocked from getting into a doorway by chairs when I'm the first person in) was thrown away before everyone could see it. This makes me feel like shit. People don't know/don't think about how their laziness creates accessibility problems, but they can be asked to. It should be a habit, anyway, for any really public space. There are lots of people with disabilities, not just me.

Of course, I heard a young person today refer to people with disabilities as "cripples," not intending it in a pejorative way, but apparently not knowing better. There could be a second-language issue at stake, though. Haven't we come any further than this? Don't any grammar handbooks cover this at all, or do they just cover the gender/cultural biases?

Saturday, January 26, 2008

ADA in the Balance: New Legislation

Via Katja at Broken Clay, Steven Kuuisto blogs about the ADA Restoration Act. For those who don't know, the ADA is losing a lot of its power in the courts.

Please fax your senator and representative to stress the importance of this bill. Anyone could become disabled at any time--you, your parents, your kids, your significant other, your friend. With an aging population and an increasing number of people with chronic conditions able to manage them with contemporary medicine, this bill affects a lot of people.

For examples of how limited court readings have become, at the Consortium of Citizens with Disabilities there are stories of a number of people with disabilities who have faced discrimination, including Carey McClure, an electrician with muscular dystrophy whom the court said was not disabled, though he used a wheelchair, because he adapted so well. Nevermind that muscular dystrophy is progressive or that he can't walk, can't participate in many activities, and was fired because his disability. If muscular dystrophy and wheelchair use doesn't qualify as disabled, what exactly does? The courts have also upheld firings for intellectual disability, diabetes, epilepsy, and multiple sclerosis, among others, when the employee could do the work or needed minimum accommodation.

Simple things you can do to pass this legislation at Road to Freedom.

Remember that most ADA accommodations requested by employees are cost free or nearly cost free. Nevertheless, employers are more hesitant to hire people with disabilities these days.

The text of the bill is here. Surely the courts won't find a way to misread this, too.

Friday, January 25, 2008

"Some of My Best Friends Are Disabled..."

The embarrassing part of this week is buried near the end, if anyone wants to skim.

"I'm not disablist, some of my best friends/family members/coworkers/acquaintances/people I knew a decade ago or when I was in kindergarten are disabled." The highlights of getting lunch and doing errands around my Very Big Workplace:
-Weird mix of baby talk and flirtation from an employee when I ordered lunch. At least he seemed to get some of the issues, recognized I couldn't reach.
-There was a very long line and many people needed to cut through to a different part of the cafe. So everyone chose to cut in front of me rather than in front of someone standing. Because I'm just a physical object, you know. Dangerous for them because of the tight squeeze (I'm surprised no one tripped or fell over me).
-Before I could complete my transaction, young woman behind me stepped up to the counter and crowded me out. Acted surprised and upset when employee and I kept interacting. I have to pay, get my drink and number.
-The disability accessible counter was blocked with signage and advertising.
-Some people were very helpful opening doors since security had forgotten to unlock the auto-open doors (as happens 50% of the time, I need them always). But one woman was completely annoyed that she had to get up off her duff and open a door for me. Couldn't understand why I wouldn't do it myself. I did so, later in the day, when I went to a building and no one was around. But I shouldn't have, vertebrae and muscles still hurt. And it's difficult to do, to position just right to grab the handle and then to open the door without blocking it and go through it. Requires minute position adjustments and danger of smacking into glass of other double door full force. And then, once in, I really noticed the next set of doors, separated by a couple of feet from the first door. No room to reposition after you're sandwiched between the two.
-One man helped me leave a document at someone's office, but had that stupid "did my good deed for the day" face. People really overdo the emotion.
-Acquaintance whom I hadn't seen in a long time wouldn't talk to me, acted very tense.
-Various people got that, "who let her out?" look. They lost the look if someone came up to me in the hallway or in the cafe. As if I need someone else to validate my presence.
-Got a scooter leaner. Don't lean on the chair, people. I know your back hurts, too. I've been there. I'm sorry. Pain and fatigue are miserable. But don't lean, pretty please.
-Got teary and guilty reactions from some people I barely know. Guys, I felt the same way last week and you didn't show any empathy then. I felt like crying then, not now. And a gasp, and a "what happened?" Same issues as usual--you just couldn't see my disability before. Not that you can see it now.

But there are also a lot of cool/saavy people.
-I had to get a male coworker to take me to the restroom since automatic doors haven't been installed. Fortunately, it was no big deal to him or me, but I'd rather be able to take myself whenever.
-The maintenance guys came by to talk to me directly about a few modifications and to apologize that some work they thought had been done was done in the wrong place. It helps if people give them the orders, though. They said that one restroom door required 17-18 lbs of force to open; ADA allows 5 lbs of force. No wonder I had such difficulty. I had to wedge my foot in and use my elbow to shove it open--I couldn't pull hard enough with my arms and upper back. They almost ordered the automatic restroom opener on the wrong restroom, the very cramped one, because they were too afraid to go in to check it out. They did reinstall one disabled stall lock from 5 1/2 feet high to waist high; I almost don't have the heart to tell them they did it backwards (the lock is on the door and the pin on the wall, meaning I can't use it to pull the door toward me and must pull very hard at the top or bottom of the door to close it). But their efforts are a lot more than I can say for the VPs who let my requests sit on their desks for two months.

And all this in addition to trying to get all my work done and being in pain.

And I learned more about access issues and my limitations:
-There's a big bump between two abutting sidewalks that stops my scooter hard. No way around it--it's the single path to our car. I can barely get over it. I don't know how other scooter/wheelchair users have been navigating it. I had to stop, back the scooter up, and charge at it full speed ahead to get over it, kind of worried that it wouldn't work. Hurt my back when it bumped down hard again.
-I got stuck in a one-person disability bathroom. I could get in, not out. Door was behind me, can't drive and open door behind me. Arms not long enough to hold door open and back in, and creates low back strain anyway.
-I strained my back too much using photocopier too long, trying to put on my coat a few times, slamming elevator buttons as I drove past before the doors closed, slamming into furniture since even at low speed there's not close enough and there's too close, trying to hurtle at the correct elevator before the doors closed again, trying to close doors behind me (way more difficult than opening), trying to reach for post-its and phone and books in ways I normally wouldn't because it was too much of a pain to back the thing up and turn it around just to get one thing.
-Here's the embarrassing part: I slammed into a table so hard at someone's interview and presentation that the whole table slid forward by about a foot. Nerve wracking for me and job candidate. I had almost asked someone to trade places, but no, I had to try to go around to a seat out of the way. There should have been enough room to get through. I guess I got distracted. I was very, very tired at that point, especially after getting into the building myself and getting stuck in the bathroom. Some of these people I don't want to look in the face for a while. Ironically, it will take me using the scooter competently in front of them for a while to make me (and them?) forget.

I found every bump and irregularity in the sidewalk because it jars my spine. Fortunately not as much as walking does, but it increases pain in upper back a lot. Until yesterday, my upper spine had not bothered me in a while, except for loss of flexibility/motion. I've lost four pounds in the past few days. My PT was right, I am way more active in this than being stuck at home.

My stomach bothered me so much. Later in the day, I thought I need not have worried so much because I really was able to get around by myself and get some work done. The end of the day soured that thought, though.

Basketball, Skiing, and Walking

My husband hammered out the new dents in the scooter basket yesterday. My kids have been playing paper basketball with the basket. I wonder how many parents would chide their kids if they tried to do that with me. Fun is fine, so long as it's with permission and no one gets hurt. Certainly paper is not a problem.

I saw a sit-down ski in person today--really cool. Maybe someday I'll try one. I also saw racing wheelchairs today. They're barely more than two wheels with a sling in the middle to serve as a seat. The seat is almost on the ground, and they're small; they look like bicycle tires strung together with a bit of cloth.

I've had this long habit of walking around on the phone when I talk, a habit my kids also picked up as toddlers. A lot of it is because our dog acts like a small child when anyone gets on the phone: insideoutside insideoutside insideoutside shesstilltalking, and some of it is an attempt to avoid noise while at the same time monitoring the people causing the noise. So I circle away and back, away and back, sometimes even when my back hurts, though not for long these days and often not at all. Without thinking, I ended up on the scooter circling around my house while I was on the phone with a friend Wednesday. Didn't think I'd do that, but it came naturally. I missed it.

Coming Out

Yesterday was my first day out in the world on the scooter. I can't write about it much because I don't want to think about it much. I should have chosen a day when I would have been out 2-3 hours, not 7 1/2 hours. Exhausted, in pain and embarrassed by an accident. I ran into a really wide range of disablist and humbling experiences, many of which would not have happened if I'd limited my time out. Completely overwhelmed.

Wednesday, January 23, 2008

Amigo Scooters

Amigo scooters are the best anywhere and were the first mobility scooters, though Amigo doesn't get as much advertising and name recognition as other brands. They offer all kinds of features and customization that other brands do not, from specialized seating to a shabbat model (uses less energy/autoshutoff during nonuse without having to turn scooter back on) to a barber's style footrest for those awkward times that you're eating at a restaurant or sitting at a table and dangling legs make your back hurt (remember scooters have to be pulled parallel/sideways to a table and the seat turned). It's also the only scooter anywhere to feature the Tilt in Space, leg cushions, and side supports, options that most users can find only on wheelchairs. There is also a smooth ride seatpost if you ride regularly on bumpy terrain or flooring or a powered seat that many users select to raise and lower your height (great for getting under tables and desks but keeping yourself at a different ergonomic optimum at other times).

I love these options, but not all of them are compatible with one another. They can't be, given the nature of the construction, so some decision making is required. Ideally, I'd like the power seat, the smooth ride post, the tilt in space, and the ComfortFlex 2 seat because of my typical ride and typical pain level/seating needs. Here are some of the considerations that affect my decision (I have plenty of time thanks to insurance stalling):
The smooth ride post is not adjustable. It is 13" from the base of the post to the bottom of the seat.
The smooth ride post is not compatible with the power seat lift option.
The smooth ride post is not compatible with the Tilt in Space.
You can get a rocker switch or a key, but not both. (I want the rocker switch because I'll lose the key, but if I park it, someone can leave with it).
The ComfortFlex 2 seat has a flatter seat than the premium seat.
However, the ComfortFlex 2 seat is not compatible with the Tilt in Space.
The ComfortFlex 2 seat can be special ordered not to have the headrest attached.
The Tilt in Space rotates only 180 degrees, not 360 (should be fine for me).
Transporting the Tilt in Space can be more complicated and doesn't work with many lifts.
RD model is available in champagne (silvery color), scuba blue, green, or red. Blue or green? Blue or green? Blue or green?
Pneumatic tires work better on bumpy ground and flooring, but the flat-free tires won't, well, get flats.
I have to deal with very bumpy, pre-ADA flooring and pavement, but the Tilt in Space would give me a lot of pain relief (I sit in high backed chairs that will tip back when I must sit and do most of my work lying down). However, the Comforflex seat, the best affordable/ergonomic option for me, won't work with the Tilt in Space. You can recline the back a little, but the angle would be a problem.

The staff at Amigo are extremely helpful, by the way, and they know their equipment. They'll send out people to repair your scooter if it you have an emergency, even if you're out of town.

This is an extremely complicated set of decisions. Advice is welcome, of course. I wouldn't even have these options on other models--my temporary scooter (not Amigo) doesn't even have adequate leg length for me. I doubt, if insurance pays, if it will pay for some of the options, though they will truly help.

It's funny how disability-savvy women always want to know what color I'll get. That is an important choice, too, when it's available!

The word "Amigo" is definitely fitting for this scooter.

See Several different menu items list customized features.

Tuesday, January 22, 2008

Scooters and Prescription Drugs

I'm so exasperated by lift/car/scooter incompatabilities right now, as well as with scooter issues, that I'll have to blog more about it later. I can't have my husband trailing me everywhere I need to go the next few weeks and so can't use the scooter much until we get the transportation issues figured out. My daughter's been a little withdrawn about the scooter, but I let her and my son ride around on it in the house yesterday and rode it around the house myself, trying to figure out how to get exactly parallel to tables and cabinets. She thought riding on it was fun, so seems happier about me using it. I think she's worried about further health decline although I keep pointing out how I can get out more (pending transport issues).

In the meantime, ever tried to quit all your prescriptions at once? Horrified that I've gone from no medicine ten years ago to three or four drugs as a daily minimum, and sometimes several more, I tried to quit mine cold turkey. I recognized that one drug is driving up my heart rate, then I have to take heart medicine that works by slowing my metabolism, then I gain weight and am starting to have issues with blood sugar. I have stomach problems from NSAIDs, then have to take double doses of antacids and antibiotics. Half my hair has fallen out, which can be a side effect of most of these drugs. I have been through five rounds of antibiotics recently and still have problems from that. I don't make tears or saliva anymore, either, and take eyedrops and supplements for that, too.

So I tried to quit all of them at 8:30 a.m. last Saturday, but was on all of them by 12:30 p.m. when the rapid pulse kicked back in, I couldn't breathe well, etc. Good grief, I hate this dependence. I want healthy foods to cure everything for me.

I keep being told that I need to take even more meds, meds to help my back, my bones, my heavy bleeding. And more NSAIDS/antiinflammatories/other pain meds to stop inflammation and pain so I can do more. And all those would lead to even more side effects, I recognize. My doctors also want me on an immunosuppresant or on methotrexate, which have ghastly side effects. Honestly, my disability/disabilities, even though increasing, seem far better than the effects of these meds. Then again, I saw a video of someone with my disability for the first time recently and was a bit concerned.

Monday, January 21, 2008

MLK and Disability as a Civil Right

Happy Martin Luther King Day! It's beautiful how much closer we are to King's dream, though racist events nationally and locally still remind me how far we still have to go.

We also have a long way to go to achieve disability rights. Dave Hingsburger's posts last week on the death of Brent Martin, a young man with an intellectual disability savagely killed because of that disability, reminds me of the deaths of Emmet Till, a young man savagely killed because of his race, and Matthew Shephard, a young man savagely killed because of his sexual orientation. Hingsburger's posts don't have individual links, but look for January 11 on. Hingsburger himself reports being harassed outside a grocery store, and any of us with disabilities knows the verbal taunts that come way too often, often from people who don't even recognize that there is a disability, but who see that there's something different. And different isn't okay with them.

No one deserves to be harassed, harmed, killed, or even frowned upon because of race, economic class, gender, disability, sexual orientation, or any other number of categories we arbitrarily place people into. May we get closer each day to achieving King's dream.

Sunday, January 20, 2008

Disability Humor

A friend recently asked some questions about a TENS (transcutaneous electrical nerve stimulation) machine, which delivers a small electrical current that supposedly blocks pain. Although I'm familiar with these units, I don't use one, so I looked for more information on how and whether they work (probably not). Of the warnings I ran across, there was this on Wikipedia:

TENS Electrodes should never be placed:
On or near the eyes
In the mouth
Transcerebrally (on each temple)
On the front of the neck (due to the risk of acute hypotension through a vasovagal reflex)
On areas of numb skin/decreased sensation
On broken skin areas or wounds
On or near the trigeminal nerve

Maybe I'm easily entertained, but the first three scenarios had me laughing really hard as I envisioned Frankenstein-like self-experiments.

Thursday, January 17, 2008

Why Frida Writes?

I write lying down, just as Frida Kahlo painted lying down: