Why I don’t have a wheelchair, and it’s not what you think

The other day I wrote about the freedom of a wheelchair. I wrote about how using wheelchairs allowed me to travel last weekend when I otherwise wouldn’t have been able to, and they also let me get out of the hotel room and have a little bit of fun. But last weekend wasn’t the first time I used a wheelchair, and I doubt it will be the last. So why don’t I have one of my own?

For a long time I didn’t need a wheelchair. It was rare that I had trouble walking, and when I did, I could usually manage to “power through.” As the pain and disability got worse, I occasionally had a friend push me in a chair at the mall, or use a chair in an airport. It wasn’t often, but I did it. But I told myself those were aberrations. I was feeling stubborn. I didn’t want to need a wheelchair.

More recently, as I found myself telling people more often that “I can’t leave my apartment” or “I can’t walk” I realized that the real limitation wasn’t my ability to walk, but my inability to find an alternative. Due to joint pain and instability in my wrists, I can’t use a cane, crutches, or a walker. I can’t use my hands to lean on anything. So when the pain in my feet or knees is especially bad, I’m stuck. I spend days at a time sitting on the couch or lying in bed, and hobbling to the bathroom or kitchen only when I truly have to. I can’t leave my apartment because it involves too much walking. The stubbornness has dissolved as I have been become a prisoner in my own home. But what if I could leave without walking?

Most of my friends think I don’t have a wheelchair because I don’t need one. Some others think it’s because I refuse to use one. They’re both wrong. The reason is sadly simple: money. I can’t afford it.

Let’s say I get a low-end electric wheelchair for $1500. That’s a lot of money, especially for something I wouldn’t use every 20120809_220808day, but I think it would be worth it and I could manage to pay for it. Unfortunately, that’s not the only cost. There are many accessories I’m sure I’ll need, even though I don’t know yet what they are (if you do know, please list them in the comments! I’m trying to get an accurate idea, in case I end up doing this at some point.) And I’m guessing there would be repairs and maintenance or the chair.

Now how will get that chair around? I need a van. Let’s forget for a moment about the extra cost for gas on a minivan (I drive a compact car now.) And let’s ignore the extra money for repairs, since I’d have to get a much older car, with many more miles, than what I have now. Let’s just look at the cost of the van itself. After trading in my current car, I’d probably spend about $20,000 for a used wheelchair van.

So that’s $21,500. That’s a lot of money! And as if that weren’t enough, I need to be able to get to the van. Right now, on the bad days, I can’t walk down the long hall from my apartment to the front of my building, or down the walkway from the front door to the sidewalk. And then my car could be parked a couple blocks away. I should really live in an accessible apartment. Those are incredibly hard to find in the Boston area. These are old buildings. The last time I lived in a place that was built post-1930 was 4 apartments and a dozen years ago when I lived on the west coast. In fact, I’ve only ever lived in 2 accessible apartments. 1 was that apartment on the west coast and the other was a place that I lived in for 1 semester in college. That’s it. Everyplace else has had stairs. Newer buildings are accessible. Newer building are also expensive. Not only would I be paying moving costs, but my rent would go through the roof. This is just not an option. More likely, I would need to move to another inaccessible apartment that involved less walking to get to my car. It would need to have parking, though, so my car would be closer. Chances are, I’d be paying my same rent or more. Probably more.

Still, let’s say I could move with just slightly higher rent, plus moving costs, plus the van, and the wheelchair itself. We’re talking approximately $24,000 for a wheelchair that would be incredibly helpful about 10 times per year. (Each time varies between a few hours or a couple weeks.) This just doesn’t make sense.

So for those who’ve wondered why I don’t have a wheelchair, even though there are obviously days that it would be incredibly helpful, that’s why. It’s about the money. Plain and simple. It sucks, but it’s the reality.

Have you had to give up using a wheelchair or other mobility aide because of cost? What’s your experience with wheelchair use? Are my numbers off in any way? Please comment and share your story!

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19 Responses to Why I don’t have a wheelchair, and it’s not what you think

  1. Ridiculous! You should not have to pay anything! A stupid question maybe, but what about a scooter? A friend with MS got Medicare to pay for one … I don’t know if it would work for you. It would not help indoors unless there was a van, as you said. She uses it outdoors to do errands.

    • chronicrants says:

      Thanks Miss D. I need to look into them some more. The ones I’ve seen so far involve controls that you have to reach for, and even that short reach could be tough for me. Also, I’d still have the issues with my car and apartment. But I’ll check it out!

  2. stuckintexas says:

    I have been using a power chair for about 7-8 years now. I bought my first one for $400 by calling places that sold them new to see if they had any loaners or returns they’d sell me. Mine was a loaner they’d had around for a couple years. Aside from batteries a year later ($90 at SAMs) there was no other costs.

    About 3 years ago I got an unexpected windfall and bought a brand new chair. $2,250. Sold the old one for $400 😉

    Originally we had a small car and hubby would basically in build the chair to load it in the car. My kids were getting big and this wasn’t working.

    I sold the car and for another $2,000 bought a nice minivan. We took out the 3rd row and bought a ramp ($150). Now my chair can just be powered up and down. So easy I can do it and I can barely boil water.

    The only accessories I bought for my chair was a special device to attach my oxygen and a cup holder LOL The only upkeep my chairs have ever needed was new batteries. So far this chair doesn’t need them, I don’t know how old that used chair was.

    Medicare won’t help pay (only 80% if they do) unless you can show you must/will use it in your apartment. Seems like a backwards rule to me. Not sure if Medicaid helps with it at all.

    Without my chair I’d be stuck in the house 24/7/365.

    I hope you find a solution.

    • chronicrants says:

      Thanks so much StuckInTexas! I can’t believe I didn’t know you could just buy a separate ramp! Can you send a link for the kind you have? I can’t imagine finding a van for only $2000, but I might just have to start looking around. This is awesome!

      • stuckintexas says:

        I’m only just seeing this. If you google wheelchair ramps you’ll get a slew of choices. I bought suitcase style bc it folds up neatly and takes less room.

        If you only get a scooter, which is smaller, lighter, and cheaper, your vehicle options expand. Even a small vehicle like those mini-van SUV fusion type would work. We had a Pontiac Vibe, a scooter would fit easily in that size vehicle.

        Good luck!

      • chronicrants says:

        That is an excellent idea! Thanks! I still have a problem with where I live not being accessible, but I’m working on that too. I’m so grateful for all of the advice you’re all giving, because I’d never have known about any of this. Now I just have to figure out how best to research scooters!

  3. Did you ever see this type of crutch? http://alphacare.com.au/rehabilitation-equipment/mobility/crutches/forearm-gutter-crutch/
    I can’t use my hands to hold crutches either, but these have seen me through a few operations. At least you can lean on them.
    I used to rent them but they got so hard to find, I bought a pair.
    Good luck with your problem

    Annette

    • chronicrants says:

      Thanks Annette! Unfortunately, pressure on my forearm travels down my arm and exacerbates my wrist, so I can’t use those either, but they’re a fantastic idea for a lot of people with different issues. I’m glad they work for you!

  4. Lorna says:

    Scooters are very popular here in the UK. They range from small models that fold to go in the car to huge car like ones. I know that the small ones cost about £400 upwards.
    My Dad used to have an electric wheelchair, it was provided by the hospital.
    It does suck that everything always comes down to money.
    Hugs Lx

    • chronicrants says:

      Thanks Lorna. I’ll look into scooters again. I’ve never seen one that folds up to go in a car. Of course, I wouldn’t be able to lift it anyway, but it might be useful for my apartment with small doorways!

  5. Tamara Epps says:

    If getting a manual wheelchair is out of the question (as you need someone to push it), then I have to agree with those before me that a scooter is a very good investment if you live fairly close to where you usually go. I know I was lucky in getting mine second hand, and therefore it wasn’t too expensive (though replacing the batteries was actually the main cost).

    Have you looked to see if there are any charities that can fund (or part-fund) a wheelchair? If you are having difficulty getting out at all perhaps a simple manual one would at least mean you can go out with a friend occasionally (and you can keep it in your car). Also, if there isn’t any charities, you could always use a site like justgiving or fundme to raise the money – I know I would donate a small amount and I’m sure others would too.

    Sorry, didn’t mean to bombard you with ideas, and I hope you won’t need a wheelchair soon in the future as well.

    • chronicrants says:

      Thanks Tamara 🙂 Yes, I’ve considered gofundme, but I’m just not there quite yet. I might be soon, but not yet. As for charities, I know their resources are limited so I’d rather let people who need a chair full time use those. For now, I’m getting by without one. Ok, maybe I’m not getting by very well, but I’m doing it.

      I’ll look into scooters, but the car and apartment are the bigger costs, I think. I’m still trying to figure that out.

      And bombard away! The more ideas the better!

  6. Since I have had to rely on a power wheelchair & cannot afford transport to support it I have been confined to my apartment unless I have a doctor’s appointment. My only other contact with the outside world is through a soon-to-be totally outdated/tech-unsupported laptop. I am one of thousands if not millions. This has been my life for 15 years. Not a complaint just stating the facts.

    • chronicrants says:

      I’m so sorry to hear that, W! Have you hit up local charities to see if they can help you with transportation?

      As for the laptop, I’ve noticed that a lot of people tend to throw old ones in drawers when they get new ones. So maybe you have a friend of a friend who has one laying around? It couldn’t hurt to ask, right? A friend of mine was in the same situation, so I put out a call on FB and, sure enough, someone provided a barely-used laptop that he didn’t need, and gave it to my friend for free. I’m not saying it always works, just that it’s worth a shot.

      Good luck with everything!

  7. joyfullnoise says:

    It sounds like if you are struggling to walk in your house, that you would benefit from a scooter – therefore you can have your doctor write the script and apply for on your behalf a scooter to make your life easier in your home also.
    Also, I have had small cars and many have fit in my trunk – but if lifting it is an issue for you, like it is for me – then you can actually get a hitch and lift put on your small car too. (saving you $$)
    I have also had extremely great luck finding scooters in excellent condition on Craiglist. The most I have ever paid for one is $500 and that one was only 3 years old and custom made. The person had passed away and his son was selling his dad’s items. I didn’t need new battery or anything. I’ve gotten other ones on CL for $300 and they have only needed new batteries … and they are running great also. (I have one for my husband and one for myself – and one each for here in the US and one each for in another country where we live part-time)
    Depending on what your diagnoses is – there are organizations that help with things like hitches, and lifts and things like that too – to help reduce the financial burden. …. So those are also things to look into. (check in your are to see if your county social services has an aging and disability division)
    I hope that gives you some hope, help and ideas!
    Best wishes!!

    • chronicrants says:

      Thanks Joy! It never occurred to me to check Craigslist, and I feel silly for not thinking of it – I’ll check it out!

      I’d never seen or heard of those hitches. I just found them online, but all of the pictures used are with SUVs. Would they work with a compact car? Also, I’m guessing they aren’t very helpful in bad weather, right? Or do you tie down a tarp over the scooter/chair? We have a lot of rain, snow, etc. here, so I’m wondering.

      • joyfullnoise says:

        I used a hitch on my mazda protege … and they’re pretty compact. 🙂 ….
        I live in the DC area … so am familiar with snow and ice and rain 🙂 …. I just use a tarp with bungee cords …. but there is an actual cover you can buy too that fits it exactly.
        I use the one chair style ones …. I can’t handle the other style scooter as I can’t hold my arm up that long to manage the controls. With the chair my arm just rests naturally.
        I can walk you through the insurance process if you would like for the chair … everything has to be worded very specifically these days to get it to to go through. Let me know.

      • chronicrants says:

        Joyfullnoise, can you explain what you mean by “chair style ones”? I can’t hold my arm up for long either, so I’m curious about that. And I’m impressed that the hitch worked on your little car! I’ll have to consider that.

        I’d love any tips you can give insurance-wise. Let’s talk directly. You can email me at msrants at gmail dot com or you can give me your email here and I’ll contact you. Thanks!!

  8. chronicrants says:

    I’m going to reply to each of you individually, but first I just want to say, you guys ROCK! You’re AWESOME! I’m so touched by and grateful for your incredible suggestions! Thank you SO MUCH!

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