Words from The Editor
-- By Marty Burke
 

Welcome back to Joe Villa, but Rawnie Dunn is now out and could use your good wishes and prayers.

No matter how you cut it, and I'm one of those who persists in thinking that 1,000 years is NOT the same as 999 years, the next issue will be in the 21st century and already there are good signs that a cure for Ataxia, as well as many nervous system or brain disorders, is on the way. For example, there are now some indications that bone marrow cells can be made to behave like stem cells and maybe replace damaged or destroyed  brain cells. Some other things I've noticed of late is the impatience and frustration of some who would, rather than see what information is already available on sites like InterNAF, NAF, or even Webmd etc., set up a new site that may provide some new data, but certainly serves to further isolate some of us unless there are clear links to sites that unite us. Most Ataxians, for example, have a genetic form of F.A., but mine personally is neither. (Sporadic PCD) As a result, and because most of us have to battle cancer too, I am also "on the Board" of the International Paraneoplastic Society and webmaster of their new site at <A HREF="http://pcd.50megs.com/">Click here: http://pcd.50megs.com/</A>  
http://pcd.50megs.com/ , but you will find there easy links to sites like InterNAF's and I quite literally NEED both, and the friendships I've made through them, to "make it". For example, for nearly all types of Ataxia, you might start here:

<A HREF="http://internaf.org/ataxia.html">Click here: Ataxia</A>  
http://internaf.org/ataxia.html

I want to shamelessly plug a web site run by a disabled travel agent that specializes in us and our needs. It's at:

<A HREF="http://www.timdalytravel.com/">Click here: Access Travel Home Page
</A>  
http://www.timdalytravel.com/

Another site for the disabled, where you can even get a free email account is;
<A HREF="http://www.wemedia.com/">Click here: Welcome to WeMedia</A>  

http://www.wemedia.com

Another pretty neat disabled site is::

<A HREF="http://www.halftheplanet.com/">Click here: HalfthePlanet.com-The Disability Source</A> 
http://www.halftheplanet.com/

The last newsletter was put up at this site:

<A HREF="http://www.worldataxia.com/newsletter/">Click here: Internaf Newsletter</A>  
http://www.worldataxia.com/newsletter/

The "old" InterNAF site is at:

<A HREF="http://internaf.merseyside.org/">Click here: Home Page</A>  
http://internaf.merseyside.org/

The "new" InterNAF site is:

<A HREF="http://www.internaf.org/">Click here: Welcome to INTERNAF</A>  
http://www.internaf.org/

The next Ataxia convention (I'm too messed up to go) is:

The National Convention is April 6th thru the 8th at Minneapolis at the
Mystic Lake Hotel and Casino.  Reservations for the hotel can be made by
calling 1-800-813-7349.  When you call you must mention the national Ataxia
Foundation mtg. in order to get the following rates:
$59.00 single/double occupancy
$69.00 triple                       "
$79.00 quadruple               "
$195.00 Suite
Reservations must be made by March 5th, 2001

There is a limited number of fully handicapped rooms available.

Finally, I HAVE to say something about email etiquette. I too have been recently chastised for "breaking the rules", but I must give great credit to people like Michel who have the guts to take on the thankless and difficult task of being "the enforcer". What most current members don't know is that there wouldn't even BE an InterNAF except for the efforts of a few people, among them Michel Beaudet in Canada and Chris Polhill in the UK.

<A HREF="http://internaf.org/network/somedos.html">Click here: Do's&Don'ts
</A> 
http://internaf.org/network/somedos.html

This year, I am staring a little closer at the unpleasant side of life with a
progressive illness. Being a teacher, I had summer vacation. During
vacation, I hadn't realized just how much ground I lost. The first two weeks
back at school, I thought I was going to die. It was physically so much
harder than I had expected. I fell. Often. I fell at work. I fell at home.
Some of the falls were really spectacular, and came just short of breaking
bones. Many of the falls have been related to bathroom visitations. Just
this morning, I had one. One of the nastier ones. Let's just say that
afterward, I had to clean the bathroom floor and woodwork, take a second
shower, and do a load of laundry. While that may be okay for a lazy Sunday
morning, it CANNOT happen at work.
The logical thing to do was to change my base of operations from four feet to
a sitting position. So, I did that. I moved my desk chair away from my
desk, and now use my wheelchair to navigate the office. It was a decision
made quite calmly. I thought. Quite dispassionately. I thought. It took
another week for me to realize I was seriously depressed.
At the end of each work day, I stagger in from the car, pushing a wheelchair
loaded with purse, sweater, lunchbox, and various other paraphernalia. First
stop is the bathroom. Second stop is any horizontal surface, where I flop,
facedown, and hope I never have to move again. What goes through my mind is
something like this:
I cannot do this again.
You have to do it tomorrow.
Very well, but that's the last time.
It can't be the last time. This is only October. You have to make it until
June.
This is absolutely the final year. I am not capable of doing this next year.
Under no stretch of the imagination can I do this another year.
You can, if you ....
Various wild ideas flit through my brain, all of them impractical.
I contemplated chemical therapy for a while. Friends advised me to try talk
therapy, but the idea of sobbing my soul out to a stranger for so many bucks
an hour just doesn't appeal. I haven't given up yet on the idea of drugs.
I've just decided Not Right Now.
I've also decided to go to the electric chair.
I use that term advisedly. I know that the politically correct form is
"power chair." What the hell, it's an electric chair. I know that using it
will give me more freedom than I've had in a while; but it's still a step down
in terms of ability.
Don't get me wrong. I need a power chair. I can't push my manual chair very
far any more. Certainly by the time I get from a school parking lot to the
classroom, I am ready to drop from exhaustion, and have no bright ideas to
offer the classroom teacher. At schools where I have to go up a ramp to get to
the classroom, I have to stagger to my feet and push the chair in front of me,
like a walker. No pecs. I simply don't do Up. At curb cuts, I usually go
up backwards, pushing with hands and feet. I've stopped going a lot of places
because I just don't have the arm strength or the wind to get anyplace which
isn't absolutely necessary to keep my job or to obtain sustenance. And the
places where I DO go have got to have a bathroom I can use.
This is America, right? We have the ADA, right? There are lots and lots of
places with accessible bathrooms, right?
Wrong.
I know. I'm an itinerant teacher. Who needs to sit worshipping the
porcelain god quite often. Not only at the schools I visit (where bathrooms
aren't wheelchair accessible, even if classrooms are), but an occasional stop
between schools. I am familiar with the bathrooms of the local Wendy's (don't
try it if you need anything more sophisticated and space-consuming than a
cane), McDonald's (you may be able to get In to the bathroom in a chair, but
you sure can't get OUT again) and Burger King (built post-ADA, and therefore
accessible. Sort of.) Taco Bell puts something on their floors which is
treacherous to crutches in the rain. Fred Meyer stores may have bathrooms
which are accessible, but you have to be the winner of the wheelchair marathon
if you expect to get there before the next millennium.
Even the bathroom in my office building is not accessible. And the building
I work in used to be the county rest home. In 1792, or something. I can't
get my wheelchair through the bathroom door. So, I push it as close to the
door as I can, lock the brakes, stand up, turn around, unsling the crutches
from the back of the chair, get them situated on my arms, turn back around,
toddle through the door, slam the door behind me and hope that it doesn't
catch on the trash can and bounce back wide open. Meanwhile, I'm staggering
the few steps to the toilet, trying hard not to fall into either the sink, on
the left, or the radiator, on the right. How much longer I'm going to be able
to do this little dance is questionable. Hopefully until the end of this
school year. Certainly not beyond it.
Last school year, I actually did fall back against the toilet when I was
trying to stand up. I lost my balance. I was going to fall; it was
inevitable. The only question was, would I fall forward and put my head
through the wall, or fall backward and break the toilet seat? I chose the
toilet seat.
When the custodian saw the seat, he asked me what happened. I told him. He
installed a grab bar. It's not in the right place, it's not the right height
(my office used to be a rest home, remember? Immediately next to the toilet
is the bathtub. We use the bathtub as storage space. So now it has a grab
bar on the side.) but hey, it's better than nothing.
Anyway. The bathroom in my office does not bode well for me returning to
work next year. Certainly not if I am in an electric chair.
My roommate and I took a five-hour overnight trip last weekend. I've had a
lot of experience staying in hotel rooms that were less than adequate. My
roommate has heard me bitch about these. She's trained. She made the motel
arrangements, and they were fine. But you don't always get fine on the way up
and the way back.
Let me tell you about the way up and the way back.
We live right on the I-5 corridor. Out the door, turn left at the corner,
down a block, and turn left onto the freeway. Our destination was Corvallis,
which is a straight shot up the freeway, with a minor jog at the end. A
pleasant trip. A fast trip. An easy trip.
Now, I-5 was constructed to be a super-freeway, from Canada to Mexico. Lots
of lanes. Fast. Well-maintained. Not only the road you drive on, but the
multiple, planned tourist rest stops along the freeway, in both directions.
They always have a bathroom. Sometimes there is a soft drink dispenser. At
certain strategic locations, a map, and useful information. Always picnic
tables among the trees. A chance to get out of the car, stretch your legs,
walk the dog and your husband, change and water the kiddies, and rest your
eyes before getting back behind the steering wheel.
There is always a handicapped stall in every bathroom. Let me tell you about
our experiences with them. Between the two of us, we had to take fairly
frequent potty breaks.
There is a rest stop on the freeway close to my house. I spent a lot of time
there this summer, because I knew the exact distance from car to bathroom, and
because it was a lovely place to take a book and read for the afternoon.
Now, this particular rest stop has a solitary bathroom, off by itself, for
wheelchair users. I know, because I actually saw it open once. Once, out of
the many times I was there this summer. All the other times, it has been
locked. The one time it was open, I discovered that it was broken. I looked
around for somebody to yell at, and found two people with brooms. After
venting my spleen on them, they very calmly informed me that I shouldn't use
that one, it was broken. Yelling at them a few minutes more led me to the
conclusion that they were just poor broom-pushers, no more able to fix the
problem than I was. They couldn't even tell me who their supervisor was, much
less where to find him or her.
But I digress. Back to the trip. Carolyn and I made our first stop on the
way to Corvallis. I went into the handicapped stall. There was plenty of
room to turn the chair around, but the door wouldn't close. There was no
handle on the inside from chair height to pull it closed. The little
purse-hanger thingie, as usual, was at stand-up height. So, I locked my
brakes, stood up, took my life in my hands and reached out to pull the door
shut.
It wouldn't lock.
I mean, the lock mechanism went back and forth smoothly, it just wouldn't
engage the door. So, I did my business with the door open 45 degrees, and my
business hanging out for anyone who cared to, to look. One nine-year-old girl
cared to. Her mother had to physically pull her away.
This led to The Do You Or Don't You discussion. You know, the one about "Can
you use a handicapped stall if no one is in it?" Well, the parking spaces are
marked. With warnings of fines, if you are caught. But there are no warnings
on the handicapped bathroom stalls. The police don't randomly patrol
restrooms. And the larger stalls would certainly benefit lots of people who
aren't -- technically -- disabled. The elderly. The overweight. Mothers with
several small children to try to keep together. It's not as if the disabled
are going to show up in a tearing hurry.
On the other hand, you can't predict just when a handicapped person is going
to show up and need that stall. The handicapped person usually has less
ability to wait, to maintain iron control over bladder and bowel while a mom
has all three of her little kiddies use the toilet. If the handicapped person
is me, that person is likely to need a change of clothes, if forced to wait.
I actually was in the handicapped stall of a bathroom one day, with the door
closed, but the wheels of the chair showing plainly under the door. I heard a
mother and her small child come in. The door of the stall rattled.
"No, don't do that. We have to use this one."
"I don't wanna use that one. I wanna use the big one."
"Well, we can't. Somebody is in there."
"Make her get out. I wanna use the big one."
"We can't."
"Why not?"
"Because she got here first."
I thought about that conversation a long time. It made me wonder about the
child-rearing practices of young mothers. It made me wonder about the moral
tenets of same. And finally, it made me question whether we are actually
educating kids to be more humane, or whether we are just baby-sitting them for
six hours a day.
Because she got here first?
Back in the car. We stopped for lunch, and, predictably, shortly
thereafter, we had to use another rest stop. I needed to get there faster
than I could via the process of hauling the chair out of the car, and I needed
to unbend the kinks, so I wobbled out with my crutches. By the time I got to
the restroom, Carolyn was already coming back out.
"The handicapped stall is broken. There's a sign on it to use the one in the
men's."
So we hobbled around to the men's. And waited, for the men to get out. We
waited. And out came...
A little boy, giving us the typical "dumb female" look.
We waited some more. And out came...
An elderly gentleman. Looking a little intimidated, when he saw two
heavy-set middle-aged females standing by the door of the men's.
We waited some more. And out came...
A brawny, bearded guy wearing a plaid shirt and a John Deere cap,
ostentatiously adjusting his manhood as he came.
Finally, I could go in.
I don't think that men are quite as careful as women. Maybe it's because
they don't always need to sit down.
You would think a handicapped stall is for people who need to sit down.
Apparently not.
And I want to know: what bright-eyed law student demanded and got the ADA to
require grab bars to run along the wall BEHIND the toilet. Do they think we
straddle the seat, facing the wall when we do our business? Or that, once
standing, we face the toilet to pull up our pants?
Anyway. We arrived in Corvallis. Now, this was a working gig for Carolyn,
who needed to go rehearse with the group, and leave me to my own resources
for an hour before the theater opened. It was Sunday night, and most things
in the immediate vicinity were closed. And there I am, in my manual chair,
feeling abandoned and panicked and very much alone. There was supposed to be
a restaurant open somewhere in the next block.
A block! Can I possibly manage to push myself a block? I don't think so.
It's that or hang out with the outdoor barflies, having a good time next door
to the theatre.
OK. I can do this.
I push myself past the bar and its denizens. A few feet farther, and the
arms give out. I snug up next to the window of a closed bookstore. I lock my
brakes. I lever myself to my feet. I gotta lose weight; I feel like I'm
pregnant, trying to stand up.
At last, I am standing. More or less. I turn around and face the seat of
the chair. It is now in position to act as a walker. I unlock the brakes.
And I am off, like a herd of turtles. I manage to stagger as far as the end
of the buildings.
A curb cut approaches. This one is down, halleluia! But the crown of the
street is awfully high. I hope the momentum of the curb cut carries me to the
crown of the street.
At the corner of the building, I manage to fall gratefully and gracelessly
into my seat. I unlock the brakes. I turn the chair around. I aim for the
curb cut.
Wheeeeeeeee! I hope there isn't a car approaching. Alternatively, if there
is, I hope it's going at least sixty MPH. I'll never know what hit me.
As I thought, the chair dies before I have reached the crown of the street.
It is now time for my gym workout. Up, and down the other side. Where I'm
faced with another curb cut. This one is up.
I don't do Up.
Turn the chair around. Push with feet, roll wheels backward with hands.
U-u-u-u-u-u-p. Sigh.
Turn the chair around. Face forward. Onward. For a few feet.
Pant, pant. Jesus, where IS this place?
Snug the chair up against the building. Repeat the process of the pregnant
woman. Push the chair down the first third of the block.
Hooray! Target sighted. Sit down!
Well, I had a lovely dinner, and managed to get back to the theater in time.
First stop:
Guess.
The bathroom was, indeed, accessible. But it was as far away (albeit
indoors) as the restaurant. The hall was carpeted. Not plush, but close.
The performance was great, and I managed to last until intermission before I
needed to visit The Facilities again. And yes, the distance was just as far.
Complicated this time by the fact that everyone in the building was headed for
the same place. And they all moved faster than I did. And none of them had
any scruples about keeping the handicapped stall available.
Ah, well. Back to the motel.
The next day, we stopped in Eugene. We had planned to stop in our favorite
bookstore, Mother Kali's. But it was closed. So we went and ate brunch at
Xenon's. We were sitting outside, enjoying the beautiful fall weather,
perusing the New York Times and trying not to spill our jasmine tea. I was
relating to Carolyn my difficulties in traveling a block independently the
night before.
And coming down the block is this young woman in a power chair.
"See that? That's what I need. If I had one of those, I could go several
blocks without qualm. I could travel in comfort with a companion, without
worrying about giving the companion a heart attack pushing me. But those
chairs don't fold. They won't fit into my Honda. I'd have to buy a van. And
then I'd have to have it modified. The cost of modifying a van is more
expensive than the cost of buying a van. I can't afford a van."
The young woman was passing our table. In a stab of resentment, I lashed out
at her, "I bet you have a van, don't you?"
She said yes. She turned out to be very nice. She answered our questions.
She offered us her phone number, to come and look at her van. I was feeling
quite cheered.
Well, the meal was over, and it was Time.
We asked the waitress if the bathroom was wheelchair accesible.
"Oh, yes!" she chirped. "Of course it is. I, personally, think that any
restaurant in this day and age which isn't accessible ought not to be allowed
to open."
So we went inside. While Carolyn took care of the bill, I headed toward the
bathroom.
The door was wide enough.
But it weighed at least eighty pounds. I had to get one of the help to hold
it open.
I wheeled myself in.
And was met by a wall in front of me. The door to the bathroom got hung up
on my chair behind me and wouldn't close.
Now, wait a minute. On my right are two stalls. One of them looks wide
enough for the chair. I ought to be able to do this. I ought to be able to
turn the chair around.
With a lot of effort, I got my chair completely in, and the bathroom door
completely closed. I opened the stall door and headed in.
The chair got stuck on the sink counter.
Left. Right. Left. I got it loose. I headed into the stall.
The stall door wouldn't close completely. The door got hung up on the chair.,
Manoevering, I managed to get the door caught simultaneously on the sink and
the stall door.
Carolyn came in. Oh, there was another stall. She just couldn't get to it
because my chair was stuck and took up the entire bathroom space. She had to
help me get unstuck.
And, once again, I had to do my business with the door halfway open. At
least this time, nobody else could get into the bathroom to watch.
And, hey, you? Uh, honey? Waitress? You who were so quick to pronounce
judgement on restaurants without accessible bathrooms? Well, I have something
to tell you..........