My name is Michael O’Connell. I live in
Sacramento, California. I have Muscular Dystrophy, and as a result,
I’m in a wheelchair.
And as a result, I need a van.
Let’s clear something up first…I HAVE
a van. It’s one I’ve had since 1992, and one I got
through the kindness of a wonderful woman named Yvonne, who sold
it to me at much less than its value. There were a number of reasons
for this incredible gesture, but the main one was that it had
belonged to her son, Corey, an amazing guy who, too, had Muscular
Dystrophy, but had passed away a couple of years before. It had
taken her and her family that long to finally part with it, and
their choice to let it go came at the exact perfect time for us
to find each other. Through their actions, I got my first vehicle
at the age of twenty-four, and finally achieved complete independence.
And I will always have them…and Corey…to thank for
It took me until twenty-four to get a van because
it took me that long to be able to afford one. You see, I can’t
drive just any vehicle. Due to my disability, I need a handicapped-equipped
van. But due to my particular disability situation, an ordinary
modified van, with hand-controls and such, won’t do. I needed
a van with something called the Scott System, a very expensive
driving system that allows people like myself with limited mobility,
reach and strength to operate it. And as suggested, it ain’t
cheap. Prices were different back then, but these days, a new
van with that system in it is going for about $90,000.
My van has carried me along through almost fifteen
years, and has been a Godsend. It’s allowed me to live on
my own, to work through all those years, to get around without
the need of assistance from others. It really did change my entire
life. But the problem is that I HAVE had it for fifteen years.
And as much as I love it and where it came from, it’s a
1985 van, with almost 170,000 miles on it, and it’s falling
apart. Almost daily. And it’s not going to last much longer.
Half the things on my van either don’t work
or don’t work properly. For example—this is the way
getting into the van is SUPPOSED to work. I’m supposed to
be able to roll up there in my chair, put a key in the rear of
the vehicle, bring the wheelchair lift down, ride up on it, get
in the van, start it, and drive away. As it stands now, due to
electrical and mechanical problems, I have to go up to the front
door of the van, open it, reach up (due to the Muscular Dystrophy,
“reaching up” is not something I do well) to the control
box for the system, hit the ignition button, reach up and over
(that reach thing again…) to the steering wheel (which I
can barely reach from down there) and hit the start button and
hold down the gas to start it up (this is because I now can’t
use the lift without starting the engine first, or it drains the
battery immediately), go back to the rear of the van and start
to bring the lift down (but most do so carefully, with careful
segmented use of the switch, because if I just activate it outright
the lift tends to stick and stays up there while the chains on
it just feed out onto the ground), hop the chair over the little
ramp at the end of the lift because it no longer folds down when
the lift reaches ground, reach up and pull down the activation
lever for raising the lift because it no longer folds down with
the lift like it’s supposed to, ride the lift up and say
a prayer that it won’t short out halfway up (which it’s
started doing) and leave me stuck there, get inside, close the
doors, then get up front and strap into the driver’s seat
and put it into reverse (which I sort of have to do by “feel”,
because the gear change indicator no longer works) and take off.
Then, getting out, I need to reverse the whole process, again
leaving the engine running while I’m getting out for the
lift to work, and since the controls at the rear for the lift
no longer raise the lift back up, I have to put my hand on the
lever switch on the lift and hold onto it as it goes back up (and
try not to get pulled out of the chair in the process…),
and then go up the driver door, open it, reach up and turn off
the engine. And at any given time one of the parts of this process
may just not work, so each time getting in and out is a breath-holding
van, in all its "glory"
I’ve had many exciting adventures with the
rapidly-aging van. There was the time the electrical system went
out in the middle of the freeway, at the intersection of two freeways,
during rush hour traffic, leaving me stranded in the middle (until
a police cruiser rolled up, and the officer advised me “You’re
going to get killed” and had to push me and my van off the
freeway with his cruiser. There was the time the crankshaft ate
itself at 70mph on the freeway, which almost put me through the
center divider. Or the time the steering gave out when I was making
a left turn across traffic, leaving me stranded blocking both
lanes of oncoming traffic. Or when the gear controls went out
when I was backing out of a parking space at a small market, and
I blocked anyone from getting their cars into the lot. Or the
big issue lately, the lift. Recently it went bad to where I could
get the lift down, but couldn’t get it back up. I had to
bring it down, get out of my chair and literally crawl into the
back of the van, use the manual controls inside to bring the lift
(and my chair) up to me and then get back in the chair. Then when
getting out, I wouldn’t be able to get it back up, so, until
I found a place to work on it (my lift it so old the manufacturer
no longer supports it, so 95% of shops won’t touch it for
insurance reasons), I had to slide open the side door on the van,
get out of my chair, sit on the floor, and hold onto my chair
and lower it to the ground myself...and then lower myself into
it. Which was a pain (and a workout), but was kind of working
until the night I got home from work and was trying, and the chair
dropped and just yanked me right out of the van with it and threw
me to the asphalt. Okay, OUCH…
There’s a big list of things that aren’t
working, and new things being added to it all the time. Right
now, in fact, I’m trying to find parts for the after-market
electric windows, because it’s turned summertime in Sacramento,
and it’s hitting 90 degrees already, and neither of my windows
roll down and the air-conditioning is out (THAT makes for a long
commute…). If things go wrong but there’s still some
kind of work-around, it’s annoying, but I don’t complain
much, as long as it’ll still get me to work somehow. But
it’s when things break that have to be fixed where the problems
come in. Assuming I can even find someone to work on what the
problem is, the problem is usually very expensive to fix. And
continuing to pour money into a twenty-year old van that’s
just going to keep going under doesn’t make a lot of sense.
So I’ve known for a while that this thing
is on its last legs. Which leads to the idea of replacing it.
Which leads us back to the $90,000 thing. Okay, I don’t
actually HAVE $90,000. I work for a living, as I said. I’m
very disabled, but I don’t take a government check. I work,
and I work hard…often twelve hours at day at the office,
often six days a week. Unfortunately, I don’t have the kind
of job that pays enough to be able to replace the van (frankly,
not enough to continue fixing it…). I’ve known for
a while now that one of these time, something’s finally
going to go wrong that’s not fixable or is way too expensive
to fix, and that then I’d be stuck looking for a new van
(and some way to afford it). I should also note that finding one
of these vans available is no easy task either. New ones are obviously
way out of my price range, which leaves me with needing to find
a used one, and generally somebody out there has to be selling
one for that to happen. And that person could be on the other
side of the country, as there just aren’t that many of these
out there in the first place.
But recently, when I started having more van problems,
my stepfather, Jack, frustrated with what I was going through,
decided to call the company that builds them and find out if any
of them are floating around out there right now. What he found
out is that this company had just equipped a used van for someone,
and that this someone had to back out of the deal at the last
minute. So it turns out that one is right there at their company
in L.A., and available right now.
And it’s a beauty.
System", the one that works for me, in the available van
What they have is a 2002 Ford E-150 with the Scott
System in it. It also only has 30,000 miles on it. It has a lift
that’s NOT older than many of the people I work with, and
it’s in amazing condition, and it has all kinds of bonuses
that only someone driving a van like mine could appreciate. Like
a working stereo (all I’ve ever had is a cheap A.M. radio
that shorted out a long time ago). All of its gears (mine currently
does not have “park” as a working gear). A control
system with buttons that don’t stick and that all work,
and a brake system that fully functions (my hand-control brakes
went bad a couple of year ago, forcing me to switch to the brake
pedal to stop). Its dash lights all light up (half of mine don’t
about half of the time). The windows roll down and the air-conditioning
works. The engine doesn’t sputter and die two or three times
in the morning before you can drive it, or stall out if you give
it too much gas taking off from a stop light. The lift works without
making terrible grinding noises and sometimes needing (literally)
to be kicked to function. The side door actually opens (mine currently
can’t…which is probably better because it also has
a habit of coming open while I’m driving…).
In short, it’s a dependable, functional and
safe van. And it’s exactly the one I need.
And oh my, is it funky.
The van that's
I had to laugh when my stepfather forwarded the
e-mail to me with the van photos. Is that the paint job I would
have chosen for myself…me, a 37-year old working professional?
Probably not. But seeing it, I totally fell in love with it, nonetheless.
That van doesn’t just function. It has STYLE. And attitude.
I think it’s gorgeous.
"Pimp My Ride". This one comes pre-pimped!
And, being a used van, it also doesn’t carry
quite the same price tag as one of their new ones does. It’s
going for right about $50,000 (a little more, due to the fitting
and adjustment work that would have to be done to adapt it to
me). Granted, that’s still $50,000 more than I have, but
it sure beats $90,000. It’s $40,000 less than a new one
(which might have been my only option if my van had totally gone
under and no used ones were available at that time), and, again,
it’s a 2002 with only 30,000 miles. That means, if I were
to get it, that pretty much guarantees me another decade of relatively
worry-free (for a change) driving, without it going back in the
shop time and again and leaving me taking cabs to work while its
being fixed. I still can’t quite fathom that…just
getting in my vehicle and starting it and driving without listening
carefully to every little new noise and wondering if it’s
a noise that means I’m going to be stuck on the side of
(or sometimes in the middle of) the road again, calling yet another
tow truck (I think AAA knows me by voice now…), without
wondering if once I get in it I’ll be trapped in it by a
malfunctioning lift (which has happened many times). Your idea
of a dream come true may differ from mine, but this, to me, would
be a complete miracle.
However…we’re back to that problem of
As I said, I don’t have the kind of career
that means I have fifty large sitting around at my disposal. It’s
unfortunate that due to my circumstances, I don’t have any
option but a vehicle with this kind of price tag on it. It’s
either that or no wheels. And I really, really need wheels. I
lead a busy life. I’ve chosen not to sit home and feel sorry
for myself, but to get out in the world and live life and make
my own way it in. I don’t want that life to go away again.
And it’s the wheels that really make it all work.
I’ve heard for some time about so-called “begging
sites” on the internet. People will build web pages asking
for money for all kinds of reasons. Some of them noble and necessary,
and some of them, frankly, kind of silly. I’ve heard lately
of the “bunny guy” who put up a page with a picture
of him and a bunny, and was planning to cook and eat the bunny
if enough people didn’t send him money. And he got money
(a lot of bunny lovers out there)! And I heard he even started
up a separate account for people who WANTED him to eat the bunny.
And he got money for that, too. I recall a news story on a woman
in New York who had divorced a wealthy husband, and now could
no longer afford to live the lifestyle she’d grown accustomed
to. So she put up a site, and people started sending her money
to keep her stylish apartment, shop at Bloomingdale’s, hit
the spa, etc. There are thousands of stories like that out there
(some of them really funny), and thousands of people sending money
to those sites.
So it occurred me, if people are willing to give
money to woman to keep her shoe inventory from dropping below
200, maybe they might be willing to help a guy out who needs a
van. Seems like it’s a pretty good cause. Not as good as
saving bunnies, but still pretty good.
So, just like with that girl you really want to
take to the prom, I figured it never hurts to ask.
Okay, bad example. Scratch that.
that a wheelchair lift that actually WORKS? GET out...
It’s very against my nature to ask for things.
For help, specifically. I don’t take it from the government,
I fight it from my family, and I even hurry to open doors myself
so other people don’t have to open them for me. It’s
just who I am. But this is pretty big. Finding a way to come up
with 50k is a little beyond pulling up one’s own bootstraps.
I’ve got to come up with some way to make this happen. So,
again, against my nature, I’m asking total strangers if
they want to help out.
I don’t know if it’s realistic to expect
to reach the whole goal with a request like this, but even if
I can get part of the way there, it might still be doable. I figure
if I can reach enough people who might be willing to throw a few
bucks my way to be a part of making this happen—and the
internet age actually makes something like this possible—I
might actually be able to get this van while it’s still
available. And continue to lead the independent life that I’ve
worked so hard to make for myself in a world that constantly tells
me “you can’t do that”. “I can”
isn’t just a platitude for me, it’s a way of life.
And I’d love to add “I CAN come up with enough money
for this van” to my list of achievements.
In case, at this point, you’re wanting to
know a little bit more about the wonderful and innovate people
who build these vans (and would be selling me mine), I figure
I’d better throw you a link to the site for the friendly
folks at Driving Systems Incorporated:
There’s a good chunk of info on them and their
company, and the vans they build, on their site. These guys are
really great. They’re out of Van Nuys (“Van”
Nuys…ironic, don’t you think?), California, and though
I’ve never (yet) met them personally, they’ve always
been there for me over the phone when I’ve had problems
with my vehicle—with helpful advice, direction on who to
go to in whatever area I was living in at the time, direct assistance
such as when I had to have my steering system removed and shipped
to them for repair, and with the always-present question, “So
when are we going to be able to get you into a new van?”
I hope I can finally answer that question.
So, look, I know I’m not asking for a new
kidney here. I’m not in need of some life-saving operation.
I know that there are plenty of other worthy causes more deserving
of your time and hard-earned money (some of them involving bunnies…).
But since I’m not seeing too many other options at this
point, I figure what the heck. I’ll ask. So if you have
a few bucks to spare (or, you know, fifty-thousand of them…),
and this is something you might want to help out with, I’d
be so much more grateful than you can imagine. You’d be
helping a guy out who wants nothing more than to keep on working
and living life and being part of the world on his own terms.
Really, blue flames are just a bonus, not the motivation. I swear.
If you do, and you’re willing, just click on that PayPal
link (please note, you don't need a PayPal account to use this.
You can use major credit cards, too!), and whatever you can help
with is going to make a difference. And if you have any questions,
you can feel free to contact me at firstname.lastname@example.org.
Thank you very much for your time, and your consideration,
and my best wishes to you and yours.
Click HERE to view
the van specs
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