Thank you so much, Chefguy!
Sent you a little something. Also, I’ll try to remember to share the link around.
Since your username is so similar to mine…
You know, I was hesitant to post this here–it’s often a bit awkward, mixing your online life with your real identity–but I’m so glad I did. The generosity is really amazing.
Got to love someone who doesn’t let anything stop him. Good for you, lobot.
Life’s too fun to let negativity get in your way.
When I was in high school, a teacher (who had training in disability, no less) told my mother in front of me that “university is not an option” and “Dion needs to realise his limitations”. (I wasn’t angling to be a supermodel or Olympic athlete, mind you–I just wanted to pursue a degree.) That was 20 years ago.
28 years ago a doctor said I had maybe three years of life left in me.
I’m so used to people selling me short that I just tune it out. My parents taught me from day dot to ignore the Negative Nancys out there, since they were often proven wrong, and that attitude has kept me in good stead for 35 years now.
Seriously! You are a very inspiring dude, Dion. I hope you get everything you need and soon!
^^Wow, just… wow. I hope you send that guy an invite to your PhD commencement.
You could sign it, “Still trying to find my limitations. Love, Dion!”
Out of sheer curiosity, I’ve tried to find him online, just to give him an update. There’s no trace of him anywhere.
My suspicion is that he was a well-placed enemy agent who was attempting to morally cripple Australia from within, one person at a time. He must’ve been recalled by his government at some point.
I suggest you advertise in Craigslist asking for someone who might have some experience with campaigns and might be able to help you raise some money.
I can’t imagine how it could possibly hurt you to ask.
I just need to be very careful as to who I get involved with. I’m sure there are all sorts of shady people ready to latch onto something like this.
Oops! You are correct. It could indeed hurt to ask. It could hurt a bunch!
Have you tried talking to your local Ford or other dealer about getting a vehicle wholesale or perhaps sharing the cost in exchange for the publicity? Or perhaps 2-3 year old low-mileage van that could be modified? I would suggest going in person: it’s extremely difficult to refuse someone who is in your physical condition. Yeah, I know it’s shameless manipulation, but so what?
Better to have a new one with a good warranty, I’d think. Maybe some extra money could be saved by patching the old van back together temporarily and using it as a trade-in?
I do rather think you could wangle a substantial discount, maybe 10% or so, simply by showing up at a dealership with a lowball offer in cash. But there’s still the matter of all the modifications the new van will need. Any chance insurance or government funding could help for that stuff?
We’ve talked to various dealerships and also head offices. Some responses have been more positive than others (such as being fobbed off completely) but there’s nothing concrete at this stage.
My experience with government funding is… not good. I was once told that the government will not fund a “lifestyle” (i.e. they’ll barely keep me alive but put no effort into allowing me to leave the house). They may fund wheelchair restraints for the van (or something similar) but I’d be looking at a very long waiting time.
I’m thinking of trying to estimate mod costs by asking around, but it’s very hard when the make/model of the van itself is unknown. So I’ll keep trying to wrangle a deal on a van and go from there.
In the US, there is a large charity called the Muscular Dystrophy Association perhaps best known for a telethon over Labor Day weekend (American Labor Day, which is the first Monday in September) during which they raise millions of dollars. Jerry Lewis, an American comedian, hosted the telethon for decades.
Anyhow my point is do you in Australia have anything like the Muscular Dystrophy Association? If so perhaps they can help you get a grant. And second the idea of talking to the Lions Club, Rotary Club or other such fraternal organizations.
I just contacted Muscular Dystrophy NSW and I’ve also contacted the Lions Club. I’ll keep you posted.
Any chance that any of the gear, restraints, etc. in the current van could be reused? I have no idea what’s even involved.
What all IS required for properly outfitting the new vehicle?
Do you have a list of “needs” vs. “wants” or is it pretty much standardized?
Maybe, as you get closer to the final goal, you could piecemeal out the gear and ask for those items to be individually underwritten?
My local charity horse rescue group does something along these lines. Instead of asking for X dollars to buy a tractor they need, they make a request for the actual tractor. If they’re going to take on a new rescue horse, they post a listing of each piece of gear the horse needs, like a gift registry. They list items from $5 retail all the way up to well, giant tractors. I suspect people are more generous and feel more connected with “their” donation.
That’s a good idea. People seem to like the idea that their contribution is going to something specific. That’s why a university lecture hall will often have a plaque with the donor’s name.
(And just for fun, here is the Gift Guide for Yale University. If you’ve got $100 million, you can pay for the new biology building and presumably get your name on it. Or $25,000 will get you a locker in the hockey arena.)
Absolute necessities are the following:
[ul]
[li]wheelchair lift[/li][li]wheelchair restraints[/li][/ul]
I’m guessing both could be transferred between vehicles. The problem is that both are also 16 years old. I’m not sure how smart it’d be to put an old lift (that may need to be replaced soon anyway) into a new vehicle. In addition, the restraints are very hard to use and many of my carers struggle with them; newer restraints have a much better design.
What I really need but have done without in the past:
[ul]
[li]interior sound dampening[/li][li]third seat in back of vehicle[/li][li]air conditioning in back of vehicle[/li][li]possible raised roof (depending on model)[/li][/ul]
In short, it is very hot and very noisy in the back. If my carer is driving, they really can’t hear me, which is dangerous. A raised roof will mean my medical needs can be adequately attended to in the vehicle. And finally, if there’s a third person, it’s safer if they’re sitting with me and can monitor me.
Oh, I also need windows in the back, just so I’m not staring at a door for an hour.
I’ve thought about the itemised list. I really need to find out rough costings first, however.