Onward ~ and ~ Upward

As I finished writing "Knees and Hands, the Life-Long Gift" I thought it might be difficult for others to understand WHY a disabled person would crawl instead of using other means. For most people who crawl, it is a progression from trying to stand and walk, to using assistive devices, to the first day of just crawling to get around in their home. And, there are reasons why it is done in private versus in public.

After the onset of a disability, the person typically tries to do everything like they USED to be able to do things. They force themselves to stand and walk (no devices), and to do things for themselves. But usually the disability gets in the way of being "normal" (should come as no surprise, but the person doesn't want to give up "normalcy" in the beginning). Disability does not come with a training manual or a guidance council.

Indeed, the newly disabled person is mostly told by doctors, friends and family to try to do everything they used to do before the illness or accident (at least for non-paralyzing accidents). I remember one visit to a pain specialist. He had a visiting doctor with him, and the Specialist barked: "Quit leaning against the wall; quit acting like a pain patient!"

Back-pain so horrible that you can't get stand up straight or get around very well?--too bad, still "be normal" ! Pain from nerve injury?--too bad, "live with it"! So the person TRIES -- oh my god, how they TRY.

Trying for "Normal"

You might remember seeing a partially disabled person in the store or on the street. They get out of their car, and stand up slowly, grimacing against pain. As they stand beside the car, they try to arch their back and move like a snake while standing, pushing their back and shoulders into a rounded position, then relaxing the muscles in the opposite direction, as though they are trying to stretch as tall as they can be. After a couple minutes, they ever-so-slowly walk to the nearest shopping cart, or just to the next car. They stop often along the way; you wonder what are they doing? They walk so slowly when they move that they are passed by every car going 1 m.p.h. and by countless numbers of other people walking by.

Every time another person comes by, the disabled person stops and seems to move slightly away from the passerby -- you don't know it, but the disabled person is worried the passerby might bump them (thus they move slightly aside, to avoid being bumped, and so they avoid more pain caused by being accidentally bumped or being pushed over and falling) - or the disabled person fears their slowness will get in the way of able-bodied persons. When they finally get to a shopping cart, they seemingly bend over the back of the basket, clutching it on both sides, their chest up close to the handle bar. And they resume their slow walk into the store.

Once inside the store, they search for a bench or chair where they can rest -- but most stores have none. And so, they carefully begin a slow journey through the store. Most disabled have picked a store they know well, so they can go right to items they need. Yes, everything becomes planned, every detail anticipated, before the disabled person ever starts a trip to the store.

Ah, the first day of trying a cane! The young disabled don't WANT a cane. Canes are associated with being old, and this person is only 20 or 30 or 40 years old! It's hard to get used to a cane, and it seems doubtful that a skinny stick could ever prevent someone from being off-balance, or prevent someone from falling. It doesn't instill much confidence in the user! And at first, it seems the cane always gets tangled up with the users' legs because the user isn't sure where to place the cane. So a new-user alternately has the stick in contact with the ground, and alternately hanging freely in the air with the crooked handle looped over the forearm. Either way, the new-user feels silly just carrying or simply using the cane. And the bottom line is, a skinny-stick care just doesn't make a user feel any safer! Of course, a quad-cane would make the user feel too embarrassed to even use it!

As the physical problem worsens, there will be friends, family, or physical therapists who mention using a walker. There's a method to walker use... it is more involved than simply sticking a 4-legged metal thing with hand-grips down in front of yourself. First the walker height has to be adjusted, then there's a system for which one of a person's legs moves up first to be inside the walker's legs. Walker moves up first, then good leg, then bad leg....get balanced with both human legs inside the walker area, then move the walker, then bad leg, then good leg... and so on. But, the walker height isn't automatic with changing shoes, for instance: A higher shoe sole requires the walker to be adjusted. And, regardless, a walker still interferes with a "natural" gait a person is used to. No, the only advantage to a walker is where there is no piece of furniture or wall to hold onto or lean against. And again, a walker never feels very natural to a 20, 30, 40 year old. The one big advantage to a walker may be a feeling of balance when going from sitting to standing. But otherwise, it may actually feel more of an obstacle for the newly disabled person! And in some disabilities, a cane or walker IS more of an obstacle. (See this website for a discussion of walkers and canes; or wheelchairs.)

Over time and as a disability progresses, a wheelchair enters the picture. "I'll get you a wheelchair," medical staff may say. But often, no one considers how a person will push themselves in such a contraption! Normal-bodied folks don't realize how hard it is to move one's one body in a chair, even a chair on wheels! It takes arm strength to pull (well push, but it feels like pulling) oneself over carpeting or uneven places, like the 3-part threshold of an elevator door, or door thresholds in buildings, including the person's home. Floors with decorative patterns makes it hard to wheel oneself; every in-laid line on the floor catches wheels, not to mention the bone and teeth-jarring bumps it causes. Uneven sidewalks, cracks or holes in cement or asphalt, and gravel make travel in a wheelchair next to impossible! And pity the person who must push a full-sized adult in any of these situations! There's also a secret only wheelchair bound persons know: wheelchair ramps aren't much good if the beginning edge is higher than the parking lot or sidewalk, and whoever thought steep inclines were OK for ramps never had to push themselves up that incline using only their own upper body strength!!

Thus are the obstacles of cane, walker, and wheelchair when used outside of one's house. And, none of these devices do much to mediate unrelenting pain. Indeed, even sitting may aggravate a person's pain, so using even a wheelchair is often a last resort, (like when on an outing) involves more walking than a person is capable of doing!

So why would a person decide to not use any assistive device in their own home?

1. Being unsteady on one's own feet is very scary, and rather than fearing a fall, it's easier to get down on the floor from the beginning. Floors are reliable and steady; It would only be a 5-inch fall rather than falling 5 or 6 feet onto your head.

2. Assistive devices are often harder to use than they look, especially if one's home has not been renovated for the disabled.

3. Back pain often interferes with walking. Many back-pain sufferers come to realize they get pain relief by resting against a wall, or bringing up one or both knees. Where there is inadequate wall space to lean against in one's home, like along a stair railing or going across a large room, there is no where to "rest a minute." The floor feels safer than walking and because the knees are bent, the low back pain is less when crawling.

4. Being down in bed a lot causes weird problems when the person stands. Feeling light-headed or nauseated when standing makes a person feel like they need to be as low as they can get in space; the floor is the lowest space to be in (other than bed). Part of the weird problems like light-headedness or nausea can be caused by severe pain and if bending the knees helps decrease pain, there is an immediate "reward" when crawling.

5. Some conditions, like dystonia or an infected/sore stump that prevents use of a prosthesis and pain when sitting, can be more an obstacle to using devices like wheelchairs. It is simply easier to crawl. And there is less a need to carry things in one's hands when on the floor: items can be pushed in a box as the person moves across the floor, or put in bags which a person can drag along beside/behind their body.

6. The floor feels safer and is more reliable than human helpers who often are poorly trained in correct body mechanics and actually can cause the disabled person to become unsteady or off-balance. Or, paid helpers do not show up for work as a home health caregiver, leaving a person to fend for themselves a lot. When a person lives alone or has little personal help, no help, or frequent lack of service by home care companies, a person must do what they need to do in order to survive. So, sometimes survival simply includes the necessity of crawling.

Janice was just beginning to learn to accept her disability of Multiple Sclerosis. She'd gone through a lot in that process, including her husband walking out on her, saying "I can't deal with this! Call me when you are normal again!" Janice tried very hard to become "normal again" but her disease was an obstacle to everything her life used to be. Increasingly unsteady, she fell 8 months ago, breaking several of the smallest bones in her foot. The injury was misdiagnosed as a bad sprain and wasn't put in a cast. So for the last 8 months, she has not been able to stand on her foot. Anytime she had to be out of bed, she was forced to crawl because she couldn't put weight on her foot. A specialist in orthopedic surgery examined her and said that because her foot was not immobilized in a cast when the injury occurred, the foot now had nerve injuries. He recommended certain treatments, which after another month, allowed her to stand again in a brace.

After 4 months of in-home treatment and physical therapy, she's beginning to walk. But, her Multiple Sclerosis has worsened in the past year. She's often off-balance, feels weak and nauseated when upright. She's developed a bed sore on her tailbone during this time too, and sitting in a wheelchair is just too painful right now.

Having to crawl for the first 8 months felt demeaning to Janice, but the pain and nausea when sitting, and her MS problems with standing, just make the process of crawling feel safer for now. So when she is left to fend for herself, as she often is when her home care company sends no caregivers, she gets down onto the floor and crawls.

She's too embarrassed to tell anyone. Her only objective is to survive, however she can.

Issues concerning Disabilities, Home Health Care, Sexual Abuse of Children, and Advocacy.