Jaime’s Wheelchair Project (Jaime Smith)

My name is Jamie. I’m a 33 year-old woman with a good job. I also have a happy marriage to a wonderful man. In addition to a home and several vehicles, I also own four wheelchairs. I’m a T-12 paraplegic and completely paralyzed from the waist down.

My current happiness was not always in my life. After my injury in a car accident six years ago, I went through the expected period of depression and self-doubts. I credit my finding my husband Jeff with a great deal of the force that brought me out of my negative state. Today, I am treated like and actually feel like a woman, a wife and a colleague who just happens to use a wheelchair to get around. But looking back at the tough times, I now realize that it wasn’t my useless legs or my wheelchair that caused such problems for me. It was the attitude of others which had had such a profound effect on me. I had seen all my life how men and women looked at those “poor people who are confined to wheelchairs.” Why are we “poor people”? I can drive myself anywhere I want. I work at a professional level. I have a most fulfilling, affectionate marriage in which we go out and socialize frequently. Doesn’t sound so bad, does it? It isn’t, I’m happy to tell you! So does that describe disabled to you?

I don’t want anyone who happens to come to a point where she or he too has to add a wheelchair to their lives to go through what I did. If people were informed, with real-life examples, of what life can be like for us wheelers, I believe others would not look with pity at the attractive man pushing himself around campus or the receptionist who glides away in her little wheelchair from her work station for breaks. In summary, if more people understood our lives, what it’s actually like to pull yourself into a wheelchair first thing every morning and then roll toward the opportunities and possibilities open for us all, we would no longer be treated as objects of pity and accepted fully into all aspects of society. This is what “Jamie’s Project” is all about.

Let me, please, tell you a bit about my life and particularly about my marriage. When my husband and I are having friends over and we are by the pool or the hot tub, they don’t see my wheelchair or my skinny legs. They see their friend as a whole and amazing woman. And when I come to bed in my little nightgown, Jeff doesn’t see a pair of wheels rolling up to the bed or my limp, useless legs which I pick up one-by-one  as I pull myself beside him.  He sees his beautiful wife, whom he loves.  I can do anything an “able-bodied” person can do! Just last night as we got ready to get into our large tub surrounded by water jets all around, Jeff and I decided  to get intimate with each other, just as if we were in a shower standing up. The only difference is that now we have to find out how to achieve the same effect sitting in the tub. And, in case you were wondering, yes I can take a shower, and my husband has joined me there.  We just find it easier to both sit down in the tub. And that makes it “different” and challenging, which adds to the excitement! Hey, just because I’m paralyzed doesn’t mean I’m dead. I have feelings just like everyone else. People ask me how I can have sex when I can’t feel my lower body. But the happy fact is that when you lose something you receive other and compensating gifts, just like a blind person whose senses of hearing and smell become more acute. Then after he’s dried me off, he carries me right to the bed, forgetting about even having a wheelchair. He puts lotion on me and massages my legs, which is not only sexy but helps prevent blood clots. I also give him a message for his sore muscles. Love is, after all, a two-way street, whether you happen to go down it in a wheelchair or not.

So often when I tell people about my life, they respond with a variant of, “Well, Jaime, you were just lucky to find an exceptional man who is able to look past your disability and see who you were before you were injured.” And, perhaps, they have a point. After all, my husband is exceptional. But I don’t think he’s just “overlooking” my paralysis. I believe that I and my brother and sister wheelers continue to be attractive and worthy of love and respect with our limp legs and chairs. In thinking about this matter and in discussing these things with others in chairs, I began to wonder what would happen if paralysis and wheelchairs were suddenly thrust into the lives of, say, a spouse or both members of a couple. How would this change affect their lifestyle and their activities together as a couple? How might their self-esteem be altered? How might adding wheelchairs to their lives and marriage affect their attraction for each other and their physical relationship? I feel that we could learn a lot from such an informal experiment, if it could, in fact, be conducted. Well, it can be conducted. As a matter of fact, that’s Jamie’s Project.

Jeff and I have dear friends in a couple about our age named “Kim and Miles.” They are both fully able-bodied, attractive and “into life.” Their marriage is sound and happy. What would happen to this couple if they suddenly found themselves waking up every morning with a wheelchair or maybe two beside their bed? Well, we’ll just have to find out! As we sat in the den after dinner one evening with Miles and Kim, I waited for a lull in the conversation. Then I said, “I’d like to talk to you about something kind of serious.” When they looked at me with some concern, I tried to brighten the mood by adding, “But I think it will be sort of fun too.” Going on, I said, “As you know I’m in a wheelchair, and it looks like I’ll be in one for the rest of my life. BUT, I have a wonderful husband, a great job, really good friends, lots of positive things in my life. I’m happy! But going into a chair, ‘getting your wheels,’ as they say, is a difficult experience. And hundreds of younger, active people have to go into wheelchairs every year. I want to do something to help them adjust, and I’d appreciate your help in this ‘project.’” Their smiles and nods encourage me to go on, I continued, “When I tell others about my life on wheels, they tend to dismiss me as just having been lucky to find Jeff, etc. Besides, they point out; I have no choice but to try to see the positives of being in a wheelchair, since I now come with one. But, they ask, how would someone else feel if suddenly, like me, their only way of getting around was in a wheelchair? How, for example, would an active couple like you feel and react to being in chairs? I’d really, really appreciate it if you’d help us find out.

What I’d like you to do, and Jeff is going to join us in this too, is spend increasing amounts of time in one of my wheelchairs. We’ll start here in our home, but perhaps later we’ll go out in public around people who don’t know us. Anyway, from what I’ve heard they’ll be the inevitable period of it being awkward to be in a wheelchair. It may even seem humorous at first, which won’t offend me at all. But rather soon you’ll get involved in other things, like a program on TV, a book or magazine you’re reading, a conversation or a project in which you’re intensely interested. Then you’ll start focusing on things beyond your way of getting around. As soon as you become accustomed to either one of you or both being in a wheelchair and seeing your partner on wheels, we’ll start to have informal “debriefing sessions” in which I’ll ask you about your feelings and reactions to your experiences of being in a wheelchair. I’ll write them up for publication with the help of a friend of mine who has done a lot of writing and is in a wheelchair for life himself. Do you have any questions?  Any problems you can see with “Jaime’s Project”? Will you do it? Thank you so much!”

The “project” began one Saturday afternoon with Kim gently lowering herself into one of my Colours titanium, wheelchairs. She laughed nervously at first, but she quickly got the hang of such techniques as pushing harder on one hand-rim to go to one side and also backing up to move away from furniture, etc. After a few hours, she was moving around our home as though she had been on wheels for some time. We did a few transfers from the chair to the couch, and Kim was able to learn to restrain herself from moving her legs, instead picking them up one by one as I and other paraplegics do so many times each day.  We thought we were ready, so Jeff and Miles donned suits and Kim and I changed into rather short dresses and high heels. I’ve always been told that my thin legs look particularly good when they end in high heels, and I was sure the same would apply for my friend. The looks on the boys’ faces strongly suggested that they agreed!

It was a typical sultry southern summer evening as we wheeled ourselves, Miles and Jeff walking behind, out of the house and across the driveway to the car we would be taking out that evening. I watched with admiration as my friend pushed herself out of her wheelchair and onto the car seat, then picked up her legs and placed them carefully on the floorboard. I joined her in the rear seat, as our husbands stored our wheelchairs in the back of the vehicle. I was impressed with Kim’s enthusiasm for the project, as we motored toward the out-of-town restaurant which was our first destination for the evening. As the car pulled up to the restaurant and Kim saw the people on the sidewalk, her deep green eyes widened. I instantly understood why – she realized that she was for the first time going out in public in a custom manual chair which screams, ‘IN A WHEELCHAIR FOR LIFE,” an experience  many of us have had and will never, never forget. The door beside her opened, revealing Miles standing there behind her little wheelchair. She bravely pulled herself into it. Were any other females observing this process, any feelings of pity they may have had would certainly have been tempered by a bit of jealousy for Kim’s trim but very well-endowed body. She swallowed hard, and we rolled together up the ramp to the restaurant and toward the massive wooden door, which the men opened wide for their two wheeler wives.

Just inside members of the staff were awaiting their dinner guests. They glanced down briefly at Kim and me, their faint smiles seeming to convey a mixture of greeting, pity and awkwardness. Quickly recovering, they directed their comments to the gentlemen, asking the rhetorical question, “Four for dinner?” After answering in the affirmative, we moved into the dining area, having to skirt slowly by tables which were uncomfortably close together. The employees made a show of removing two chairs, and Kim and I slid under the table. She glanced at me with a look that suggested that she was experiencing a somewhat trapped feeling. After our food arrived, though, we fell into several animated conversations about planned vacations and other things going on in our lives. I noticed that Kim was joining in with her usual relish, seeming to be entirely focused on the topics discussed. At one point during supper, in fact, I leaned over to her and in a voice too low for people at the other tables to hear, remarked, “you’ve already forgotten about it, haven’t you?’ “Forgot?” she stammered in confused reply. “The….” I answered, glancing down suggestively at the wheels on either side of my hips. “Yes,” she agreed with a slight giggle, “I had completely forgotten!”  “Good,” I remarked as we both rejoined the conversation.

As we passed one of the other tables in exiting the restaurant, we overheard a man say to his wife. “How sad, both so pretty and young…and in wheelchairs.” Miles and Jeff just smiled at each other, with Jeff remarking, making no effort to avoid being overheard, “Not only are they pretty, but the style with which they glide around in these sporty little wheelchairs!” Our next stop was the mall. While I had worried earlier about Kim’s transfers, fearing that she might break the spell with a sloppy movement into or out of her chair, she was now performing like a pro, having learned from a pro, I might add. She did, though, confide to me as we rolled down a long arm of the mall that her hands and shoulders were quite tired. I assured her that I have myself been very aware of that feeling but, “It keeps getting easier the longer you’re in a chair.” Jeff and Miles having decided to go it alone to look at “guy things,” we pushed ourselves into a lingerie shop.  Kim and I got some puzzled looks, like “What would two poor women who are confined to wheelchairs need with sheer peignoirs?” We just ignored the stares and held up to each other the sexy garments, which we knew our husbands would just love! As we approached the door to the mall a couple was exiting in front of us. They glanced back and, apparently, decided that two women on wheels were beneath their notice. They just allowed the doors to close in our faces. “I just hate it when people do that to you…err…us,” Kim spat out, as I struggled with one of the heavy doors. There were, however, positive moments, such as when we, rolling well ahead of the guys, neared our handicapped parking spot. An older gentleman stopped to tell us that, “It’s beautiful to see two young ladies like you getting out together in your wheelchairs – inspiring!”

Later we assembled for our informal “debriefing “session. As had been prearranged, Kim was still in her wheelchair. “Well, Kim,” I began, “what were some of your general feelings about going out in public in your wheelchair?” “First of all,” she began, “it was a lot easier to get around than I would have imagined.  These little chairs are very well designed, and they move really well with just a little effort. But that didn’t keep my shoulders from getting tired!” “No, it doesn’t keep you from straining your shoulders, unfortunately. But how did you feel about yourself, out as a ‘wheeler,’ as we call ourselves?” “Oh, “she replied, “I felt pretty good about myself. I was a little self-conscious, particularly at first.  But then I was with friends, and you’re in a wheelchair too, so it seemed OK.” I followed that by asking, “Did you feel attractive?” “Yes, I did, but only because you’re in a wheelchair and men obviously find you attractive,” she replied. Upon contemplation and detecting here a bit of sensitivity, I probed, “So if it hadn’t been for my example, you would have doubted your attractiveness as a woman in a wheelchair?”  Kim glanced down at her lap and the two big wheels beside her, and then she looked back up at me somewhat sheepishly and mumbled, “Yes, if I had been thrust into a store in a wheelchair and on my own I probably would have felt very unsure of myself, kind of like ‘damaged merchandise.’ In fact,” she went on, “if someone had asked me why I was in a wheelchair or if it was permanent, I would have said it was all just an ‘experiment’ and I might have gotten up out of the wheelchair to prove it.”But we did this for you because you asked and you are important to us.  My friend looked kind of embarrassed and stammered, “I hope you’re not offended, Jaime, I’m just being honest.” I broke the descending silence by saying, “No, I’m not at all offended. This is what we’re trying to find out. But why would you feel damaged and bad about yourself by being out in a wheelchair?” She paused for about thirty seconds and finally got out, “I want to be desirable and for Miles to be proud of me.” Tears welled in her gorgeous green eyes as she looked at me beseechingly and said, “I’m not as strong as you are, Jaime.”

As I was explaining that, “I’m not strong, my legs just don’t work,” Miles came and knelt by her side. He took her hands into his and looking up into her face said, “It’s an amazing thing. When that couple remarked about you and Jaime being two poor young women in wheelchairs, it made me so proud of both of you. I know that she’s never allowed being in a wheelchair to stop her from doing anything in life. And I know that you’re, or would be, the same way. Your being in a wheelchair made me proud of you, and, somehow, I found you even more desirable this evening. Please don’t ask me to explain because I can’t right now.” Jeff looked down at all three of us with a knowing expression on his face and remarked, “You don’t have to explain it to me, Miles. I understand already.” Turning to Miles, I continued my probing. As I began, I thought to myself how was strange that the emotions in the room had become so intense that in discussing the feelings of a woman who went out one evening in a wheelchair it seemed to have been forgotten that I, the “investigator,” went everywhere in a wheelchair and would be doing that for the rest of my life with no choice on my part being involved! “Miles,” I said, please try to help us understand why you found Kim to be particularly desirable earlier when we went out in chairs.” “Well,” he stammered, groping for words, “I…I think it had something to do with what that couple said about you being ‘poor women in wheelchairs.’ It’s just that Jeff and I know you’re not ‘poor’ at all. It’s that…that, well, I know we all have very active and fulfilling love lives. And they don’t understand that. Yeah, maybe that’s it. Maybe I was struck by how much better; satisfying it is to be with a woman in a wheelchair than anyone might think. The contrast was so intriguing and appealing. They thought we were with these poor, crippled women, and the truth is so different. It’s like Jeff and I have this amazing and exciting secret!”

The next time we were alone together as couples, I raised the matter of the future of our wheelchair project. Kim and Miles looked uncomfortably at each other. Kim cleared her throat, and said, “I don’t think we can continue with this, at least not right now.” “It’s raised so many emotions for us,” Miles added. “You see,” he continued, “my father had been in a wheelchair.” “But,” Kim interjected, “your dad had a heart condition, he was sick. When Jamie and I use wheelchairs, that doesn’t mean we’re sick and that you and Jeff are going to lose us too. We’re healthy young woman who just happen to move about on wheels.” “I know that,” he stammered, “but it’s hard to get used to.” “I understand,” Kim said supportively, patting her husband’s knee.  “And,” she continued, “The experience took a toll from me too. At first, I realized that I was just as attractive and desirable as ever. But as my time on wheels went forward and I came to see myself as a woman in a wheelchair, doubts did start to creep in, thoughts like, ‘This wheelchair is now part of me. Will people be looking at me or my wheelchair? Will Miles eventually come to ask himself why he couldn’t be with a ‘whole woman?’”

After a long pause, she looked up at me and said, “We’ve discussed some of the things you’ve said we might do, like go away to a resort for a weekend. I was thinking of some of the things that would happen there, and I asked Miles how it would be for him to see me rolling to bed with him at night, like you do, Jaime.  He said that would be ‘lovely and exciting,’ but it seemed to make him very anxious. I just don’t think we’re ready yet.” “Do you think you’ll ever be ‘ready’? Do you think you’ll ever be back in a wheelchair with me?” I asked gently. Kim reached out and lightly touched the hand-rim of my wheelchair.  She sighed and in a soft voice said, “Yes, I’ll be back in a wheelchair someday, with you… and with Miles.” Miles smiled slightly, Jeff more so.