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Why not go full time?
Written by Claire on Tuesday, May 8, 2007
I was recently asked if I wanted to wheel so much, why didn’t I just "go full time" and live my life from a wheelchair. The person who asked it was afraid I might get offended, but I felt it was a very good and fair question.
Some do go full time. Sean, for example. And a few others I’ve heard of, or talked to.
But for most of us, it’s extremely complicated. It’s different for everyone, but I’ll give you an example from my own life. For me, the need wasn’t that intense until the last couple of years. And now that I’m to a point where I would like to go full time, the list of things that stand in my way is rather staggering. First and foremost, my husband. He barely tolerates this whole transabled thing. He doesn’t understand, is frightened and offended by it. I first told him I had BIID last fall. He freaked out. I have since tried to talk to him about it, but he either says things like "If you want to talk, we can talk. But we’ll talk about something else" or else he gets angry and argumentative, and makes comments such as "your life is too perfect so you had to invent problems for yourself." He tolerates but resents my trips away from home for pretending, he resents the money I spend on gas and hotels, and he resents my absence. He just doesn’t get BIID, or the frame of mind it puts me in. I’m pushing it with him, already. He would never accept me wheeling full time, probably divorce me.
And, I live in a small town where everyone knows everyone else. I see my doctor all the time just out and about in town. How to explain it to my doctor? I know nearly all the nurses in the local hospital. Say I tell everyone that I’m wheeling because I have MS, or something. If I need to go to the emergency room then they’ll see in my files that I never had MS, or whatever…and word would get out, and people would never understand. I feel like I’d be instantly known around town as the crazy woman who fakes being in a wheelchair (for attention, they’d probably all say), and living with BIID isn’t as bad as the total destruction of my social life, not to mention the shame my kids would go through.
I’ve talked to other pretenders who would like to go full-time but have similar issues: family, finances, work. Some people would have to change careers. Sure, if we were actually in an accident and got an SCI, our family would deal with it, and we’d change careers if necessary. But usually, the people around us just cannot accept us actually choosing it, nor the lifestyle changes we’d impose upon them voluntarily by making that choice. Then there is the whole "what if word got out and everyone thought I was freaking insane" problem.
Those who have gone full time report that living a constant lie is difficult and stressful and frequently a logistical nightmare. For example, how do you explain to everyone the fact that you have no valid disabled parking permit? Or, how do you convince a health professional who has never heard of BIID that you need to wheel for your mental health ? Do you feel constant guilt about using these parking spaces, or do you truly feel that your psychological need for a chair is as valid as a physical need for a chair? And even if you are convinced of the latter, you know that 99.99% of the population is not going to understand AT ALL.
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13 Comments
I don’t think it will ever be simple. At least we have weekend wheeling though. At least we have something more than the ephemeral world of longing and fantasy.
I think working tooth and nail to get recognized by the psychiatric community is the first step toward gaining any real acceptance for how we want/need to live our lives.
3 On 9 May, 2007, Sean said:
rorschach, I happen to agree with you that gaining recognition is the first step towards being able to get acceptance and the ability to live how we need.
Though many would argue that the psych community is not the one they want to see focusing/accepting us :-/
That is understandable. In my mind, having it medically recognized is likely a way to bypass a lot of social stigma, and be able to obtain parking permits etc. I’m still iffy on us getting parking permits though. I’ve come to realize that I am quite naive when it comes to this whole TA thing though, so “Cum grana salis.”
5 On 11 May, 2007, Claire said:
I agree that having it formally recognized will help, somewhat, in addressing the social stigma.
Regarding parking permits…that IS a tough one. Because if part-time pretenders were to be issued parking permits for when we are using a wheelchair for therapeutic reasons, then what do we do with the permits when we’re NOT wheeling? Most pretenders are very sensitive to disability rights. The conscientious among us would not use them, but there are always a few idiots out there who would ruin it for everyone and give us a bad name. And there would be no way to enforce it, it would be the “honor system”. Not a great way to go about it.
But for a transabled person whose BIID is so severe that they wheel full-time, I think a parking permit is justified. In fact where I live, disabled parking permits can in fact be legally issued for psychological reasons (although I’m not aware of anyone having been issued one for BIID). And it would not really contribute to the problem of scarcity of disabled parking spaces, because those of us who wheel full time are *VERY* few and far between.
Claire said: “Regarding parking permits… that IS a tough one. Because if part-time pretenders were to be issued parking permits for when we are using a wheelchair for therapeutic reasons, then what do we do with the permits when we’re NOT wheeling? Most pretenders are very sensitive to disability rights. The conscientious among us would not use them, but there are always a few idiots out there who would ruin it for everyone and give us a bad name. And there would be no way to enforce it, it would be the ‘honor system’. Not a great way to go about it.”
I agree with you here. I notice plenty of people who use those permits and just walk out of their car and appear in no way disabled. It pisses me off. I want to run them over with my car, then they’ll understand what the permit is for. It’s not a matter of convenience but a matter of necessity.
With respect, I have hardly ever seen more than half the spaces for disabled persons in use anywhere, and I get around a lot.
8 On 12 May, 2007, Claire said:
Eric: there are plenty of valid conditions that could justify the use of a disabled parking placard but the person doesn’t visibly look disabled. Here’s an example: a child living in south Florida has a rare skin condition that makes him unable to sweat. It’s dangerous for him to be out in the heat, so he has a disabled parking placard to ensure that his parents can park near the entrance and get him into the air-conditioned building quickly. The kid looks completely healthy, but you just never know.
Brice: it depends on where though. In the suburbs, where construction is fairly new, and at places like Wal-Marts and malls, there are tons of disabled parking spots and I agree, they’re usually half empty.
And then you get into older sections of town, older construction, and for an entire building there is one disabled spot. Most of the commercial constuction where I live is old, and disabled parking spots are scarce.
9 On 12 May, 2007, Sean said:
To follow up on what Claire was saying…
Eric, other things we can’t see just by looking could invclude serious heart conditions, sun allergies, MS on a good day, single (or even double) amputee walking without a limp, etc…
Brice, Claire is right, it depends a lot of where you go. It also depends on what time you go. An acquaintance of mine told me that there were never any parking problems at the grocery store I frequent. I told her I could never find a parking space there. Turns out she was going in the morning, and I was going in the late afternoon/early evening. Of course the solution, one might say, would be to go in the morning. But that’s not convenient when you work full time!
You’re right–there are things we can’t see, and my own soon-to-be father in law has one, although he gets around fine. I guess perhaps it is just me who is a bit jealous. It’s that darn BIID working in my head again.
This is a terrible story but true, and one I thought I’d share with you all. Once, when I was a teenager, I almost stole one of those placards. I was about 17 and had driven to the grocery store. There was a car parked in a regular parking space way out at the end of the lot. The place was busy and I had parked right next to this car. The windows were wide open and on the dashboard was one of those placards. Now, I am not a thief, and I have not stolen anything since I was a small child (we all do it once when we’re little, I think), but that placard was so tempting to me. At the time, I was so ashamed of myself that I even thought of taking it that I just cried. I sat in my car and cried. I stared at it. A couple of times I almost got right out of the car to take it, but I couldn’t make myself do it. I knew it was wrong, and so I drove home and didn’t think about it again after a few days, until I read this story.
I wonder, is there a certain part of us that is capable of doing so many things we know are not morally accepted, and if so, what exactly does that mean? This is just one example of how strong the feelings are, and how early in life they begin.
I am a true wheeler and I have the parking permit But I do not use it unless i really need it like if i am just roling into the store for a quick thing or 2 that i can put in my lap I usuly just park in the lot where i can load in and out with my chair (usuly on the end of a line of parking slots) but when i go shopping i need the plackard so i can get close to the store (have you ever tryed to push a shopping cart from a chair?) so i do not have far to push the cart. as far as pretenders having plackards… if they used them only when wheeling i se nothing wrong with it hell most AB people that park in handicaped sopts have no excuse what so ever other than they are to lazy to walk any farther that they have to.
12 On 15 May, 2007, Claire said:
As far as the “honor system” goes, it just occurred to me…every family member of a bona fide parking placard owner is *already* on the honor system.
Claire:
First off I sympathize with the issues that have been presented in your marriage. I lost a relationship over my “need” to wheel, and it was very difficult for me. On the other hand, our “need” to wheel is part of who we are and by forcing you to suppress it your husband is really being unfair to you. Most of us on the board know that this is not something you choose, nor is it something you can ignore on command. As such I definately think the two of you should seek counseling to help him deal with this better. I hate to say it, but when he married you it was for better or worse…and if he has trouble living up to that I dont know how things will go on. I hate to be the prophet of doom but I fear that if he continues to restrict your expression of who you are, one day you will resent it enough to leave him.
Just my opinion
Ben
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1 On 8 May, 2007, Marie said:
I think it’d be hard to get away with bright orange earplugs at work. I can’t even go 30 minutes with my iPod before a coworker is waving his hands in my face for attention.
In any event: it isn’t simple - for any of us.