When I was first diagnosed I spent some time debating on whether I should "go public" with the information that I have MS. There are pros and cons. I read somewhere that you shouldn't "out yourself" to get sympathy, you should only do so if you have a concrete goal in mind. At first I felt only an abstract desire to be truthful. I believe that if you attempt to internalize things, to suppress them in your mind without expressing your thoughts and emotions, you only end up hurting yourself and those around you. I don't believe in keeping secrets. But that's just an abstraction.
The downside to "going public" is of course that people are prejudiced against the disabled. There is no shortage of academic literature that attests to an unconscious prejudice that the work done by disabled people is of less merit than that done by nondisabled people purely because they are disabled. Unconsciously we think of the disabled as being stupid. People will talk louder to a blind man even though he can hear perfectly well, it's as if our shouting can somehow compensate for the fact that he can't see. As I say, it's unconscious, it happens with even the most well-meaning people. It can put our jobs at risk for no real reason, and believe me, we need the money, the health insurance, the pharmacy benefits, and the disability plan.
The upside to going public is not limited to the psychological health benefits that go along with being truthful and open about your condition. You can also make use of mobility aids that shout to the world "I'm disabled" without guilt or fear.
Disabled Parking
The first thing I wanted was to be able to park in a disabled parking place. Although the parking situation is better at my place of employment than some, I still normally would have to park a couple of hundred feet from where I work, and the Summer here usually includes up to a month of consecutive days with temperatures over 100°F (38°C), with highs sometimes reaching 108°F (43°C). The hot weather usually lasts from May to September. As you've probably read, that's not good for MS. The disabled tag lets me park within 50 feet of the building in which I work. The following picture is from old declassified spy satellite imagery. It's amazing what you can find on the web.
I wasn't sure at first whether my neurologist would agree to sign the paperwork that would let me get a disabled tag. After all, at that point I looked perfectly normal. I went ahead and asked because several people at my MS support group repeatedly told me to ask for things before I really need them because getting them takes time. He signed without demur.
I had a choice of a hangtag, which I hang from my mirror when I park and remove it to drive (it's a big thing that gets in the way), and a permanent disabled license plate. The advantages to a hangtag are:
- You can take it down and pretend to be a stealth normal person. Your disability is only on display for all to see when you park.
- You can move it from vehicle to vehicle. It has your driver's license number on it. This means that when you rent a car or borrow one from a friend or relative, or even travel as a passenger in somebody else's car, you can still use the hangtag to park.
The problem is, I would often forget to hang it when I park in a disabled parking space. "I'm sorry officer, but my disability involves a loss of memory" just doesn't cut it. I probably forgot it 5 or 6 times. I was caught twice. Both tickets were dismissed after I presented the hangtag at the local police station... but the next time I would have had to pay a nontrivial fine. I finally bit the bullet and got a disabled license plate for my car. I also have a hangtag which I use in my wife's car and when we travel. That way we get the best of both worlds.In hindsight, I should have acknowledged that MS has compromised my memory and gone ahead and gotten the license plate in the first place.
The first time I parked in a disabled slot at work (with a certain amount of trepidation - after all, people might see me), I got out of my car and before I had gone more than 10 feet a colleague from another department walked past and said "You know, you don't look like the kind of person that one usually associates with parking in a disabled spot". I explained what was going on in more detail than he probably wanted to hear. He's a nice guy, and I think that he genuinely meant the comment at a surface level - I sure as hell didn't look disabled at the time. But the unconscious subtext of the comment, the part that wasn't verbalized, was perhaps that I am trying to beat the system by getting a disabled tag when I really didn't need it. Maybe I'm being overly sensitive about it, but as I said, there is academic research that shows that this kind of unconscious prejudice is endemic.
The Stick
The next mobility aid I needed was a walking stick. When I'm feeling dizzy, tired, just can't get my legs to work (see Current Symptoms), or I'm afraid that I'll stumble, having a stick to lean on really helps. I don't need it all the time, and I don't use it in the house or the office unless I am going out of the building. But there are days when I need it more often than not when I walk more than 20 or 30 feet.It's a great symbol too. I used to worry about my car getting vandalized because I don't look disabled. I've read accounts of this happening. Some lowbrow self-important cretin sees a person who looks healthy parking in a disabled slot, gets angry that they're abusing the system, and vents the anger by scratching or denting their car. Carrying the stick sends a clear message that I need that disabled parking slot. Of course, I could be faking it by carrying a stick when I don't need to, but I figure that these people aren't thinking rationally in the first place, and an unconscious symbol like a walking stick is going to hit them at a gut level.
Of course, if I catch somebody vandalizing my car, then the stick is going to come in handy to hit them (as the Texans say) upside the head.
The Manual Wheelchair
The next thing I tried was a manual wheelchair. I had heard that it can help with fatigue. I first tried it in a week when I felt particularly bad. It did help not having to get up and down from a chair all of the time, and coasting on a flat surface was cool. The downside is that it's tough on the arms. I got just as tired wheeling it as I did walking, particularly getting from the car to my office which is over sloping ground with uneven concrete. I keep one in my office now to use inside the building when I need it, but it's definitely not a longterm solution to my fatigue problem.
My wife got me a totally black wheelchair, as you can see above. With black biking gloves (a necessity if you're going to use a manual wheelchair), black jeans, a black teeshirt, black socks, and black shoes, I may be clueless but looking good. Some people use manual wheelchairs without the foot supports, but I was totally not into holding my feet off the ground or using them to scoot along. Foot supports rock, and you can use them to carve hunks out of other people's ankles as you turn.
Using a wheelchair sends out a definite signal. I caused a bit of a stir the first time I turned up at a faculty meeting in it. I could immediately see who were, so to speak, circling the wagons around me, and who were circling like wolves ready for the kill, looking for any sign of weakness that they could exploit. A few people immediately leapt to their feet and started pulling out chairs and changing places so I could pull up at the table easily. Shock and genuine offers of support were expressed vociferously. But a few of my colleagues exchanged stony-faced looks, snide smiles, and an "Oh my god, what is this guy trying to pull now" attitude. I know who you are now. Semiotics rule.
The Scooter
All through Fall 2001 and Spring 2002 my wife kept nagging me to get a scooter. You know, one of those three-wheeled electric things that disabled people use. I resisted strongly. You see, a scooter sends out a strong signal that "I'm helpless, I need technology to get around". I fought it for as long as I could.My wife, who I mentioned elsewhere is the Garage Sale Queen, actually found a used scooter at a garage sale for a great price, and, never one to listen to a damn thing I say, purchased it and brought it home (pictures in the next section). She nagged me into trying it at a Science Fiction convention in Dallas the next weekend. I tried it, and I liked it. It really helps with the fatigue. And having that little bit of assistance lets me do more in a day than I would otherwise be able to do.
I noticed three semiotic issues right away. The first thing is that almost nobody looks you in the eye when you're using it. It's like you are coated in Eyeball Teflon or something. If somebody accidentally lets their eyes drift over to you, they look away quickly. There must be a way to use Eyeball Teflon to generate power. We could end our dependence on fossil fuels, I'm sure.
The second thing I noticed is that I feel like a bit of a fool using it (the British would say "a wally", the Aussies would say "a wanker", and the Americans would say "a loser"). But the fatigue benefit outweighs my ego, and if anything outweighs my ego, it should be hunted down and shot and its feet used as umbrella stands.
The third thing is that you get to run into people's ankles and they apologize. Cool.
The Lift
My wife got the scooter to the scifi convention by disassembling it and putting it into the back of her minivan. It's too heavy for either of us to lift - it weighs about as much as I do. Fortunately, it can be broken down or reassembled in about 15 minutes. I even managed to take it to work the first time in the back of my Toyota Camry. It was clear, however, that this was not a long-term solution.Some people at my MS support group told me that I should either get a minivan or a full-sized American sedan, and get a lift to put the scooter inside. This was a poor solution. I hate minivans and there's no way I want to drive a huge car. I like my Camry, it's the least-used car I've ever owned, and I'd owned it for less than a year. I'd lose about $8000 right off the bat if I sold it.
But I found a compromise. There's a lift that lets me snug the scooter into the trunk (the boot for Brits and Aussies) of the Camry. I have to take off the seat and stow it on the front seat of the Camry - it's a little heavy, but doable at my current level of strength. I have to assemble the lift by hand. The first part is a tube that goes into a bracket mounted on the floor of the trunk. Then I have to lift a swing-arm into place. That's heavy too, but also doable for now.
The swing-arm has a strap with a hook on the end to attach to a special bracket installed on the scooter, an electric motor that winches the strap, and a remote control with an up and a down button. Once assembled you basically have a crane with which you can lift out the scooter. The up-down part is electric, but the swinging and maneuvering have to be done by hand. You can get fully automatic ones, but for that you need a bigger car. What I've got now is a compromise that lets me get the job done with a minimum of expense and change.
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| 1. The Camry. | 2. Open trunk. | 3. Pop in tube. |
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| 4. Mount swing-arm. | 5. Lower strap. | 6. Lift scooter, tilt out nose. |
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| 7. Swing arm out. | 8. Lower scooter. | 9. Put on seat and basket. |
The semiotics of the lift are different than the other mobility aids on this page. "Oh, cool!" is the reaction I get the most. Engineers are drawn to it like a magnet.
The Walker
On my worst days I have difficulty even getting out of bed. I need a walker to get around the house. The first walker my wife brought home has wheels only on the front. It's kind of slow and clumsy to push. You have to lift, wheel forwards, step up to it, then repeat. The good thing about it is that it is narrow and will fit sideways through our narrow bathroom doors.
The second walker my wife brought home has wheels on all four legs, and a seat. I was concerned at first that it would slide away from me and I'd fall down, but it has handbrakes to prevent that. It's cool that it has brake handles on both sides. So far I've retained enough hand strength to use them. It is easier to use than the first walker, but it won't fit through all my doors. I've used the seat to rest on when I'm partway there.
It may be just me, but the semiotics of a walker suck. I don't want to be seen outside the house with one. I hate the damn things, they are the final symbol of my weakness and frailty. Fortunately, my walkers are great to hang clothes on until I really need them... when they go from lurking monsters to being my best friends.
The Electric Wheelchair
We bought a used electric wheelchair, the serious one with the big wheels that can go over a 6-inch kerb. I use it when I want to go outside, like taking the kids to the park. It's overkill, and I don't have a vehicle that can carry that much weight, but it's nice to be able to go to the park on days when I'm tired. We call it "The Behemoth". The signals that it sends are pretty drastic. Scooters look funny to me, but electric wheelchairs are serious.
Insurance
I didn't get any of my mobility aids using my insurance. I would have needed a letter from my neurologist, an evaluation by my insurance company, and at the end of it, gotten probably not exactly what I need or want. One requirement is that I would need to get a vehicle capable of carrying whatever mechanical scooter or wheelchair that my insurance company feels that I need. I ended up spending around $5000 by buying everything (except the stick and the lift) used. Upgrading my car would have probably cost me at least $10,000. And I didn't have to go through all the hassle and wait. Maybe that was a bad call, but while I still have my job, I'm willing to spend the money it takes to get the right equipment so that I can continue working. Insurance companies are only interested in getting me the cheapest equipment that will do the job. Nobody has my best interests at heart but me. Which is probably as it should be.