Question
I am writing a story and am looking for a physical condition for my lead character. Here is what it might look like. The story starts in 1946 and a ten year old boy has a wheel chair. Beside Polio, why did this boy have to be wheel chair bound? The story jumps every ten years to the year 2016. I'm looking for a condition where he might have some ability to stand and move in an emergency, but it is very difficult. I'd like to see medical advances over the decades that somehow effect his life, not necessarily cure him. The evolution of the wheel chair will be one, could there be others? My hesitancy about Polio is that (I think) there are so few kids out there with Polio today to identify with the lead. But now that I think of it, any child with a handicap would identify with my hero regardless of the infirmity. Another problem might be Forrest Gump had Polio. Over the process of the story the boy will go to college, get married, have children and be fairly successful in life, love and career. In the year 2010 before he gets too frail might there be an alternative form of movement available? Please be as creative as you wish with your answer. It will be appreciated. - Thank you Allan Katz

Answer
Dear Katz,

A couple of conditions come to mind. While it has received a lot of press the past couple of years, spinal cord injury might fit.  Depending on exactly where the injury is, depends on how much of the body is affected. While Christopher Reeves is a full quad, others are only para.

A ten year old boy, could have easily received an injury back than that could have left him in a chair, where today with therapy he may have walked. With the way science is going the injuries of today, might be corrected in 2016. By the way one of the most common ways to end up with a spinal cord injury is diving into shallow water. However if you wish to be different, falling out of a tree, or even a car accident can do it.

If you would like to pick something that hasn't had a lot of press, Cerebral Palsy can do the job. A very over simplified explanation of CP, the brain is damaged during pregnancy/birth. Because there is so many parts of the brain, and so many variables to the possible damage, CP can affect people in many different ways. Any combination can happen, some people will problems learning, some will have speech impairments, while many will have motor skill difficulties, then there are a few that have them all!

With medical knowledge of the 40's a child born with mild CP also have easily ended up in a chair, where to day with physical therapy they may walk.  Like with spinal cord injuries, research is working day and night. New medical surgeries and therapy are coming faster than ever, it wouldn't surprise me for a lot of these folks to have a better quality of life later.

Along with spinal cord injuries and CP there there is TBI (traumatic brain injury) these folks also can have a wide range of impairment.

There are some other conditions like spinal bifia, that might work too.

The first three would be my top recommendations. Each has been around forever and is still present today. Each one can cause secondary problems that can make the body frail, lack of exercise weakens the body, sores and circulation problems are common, and something as simple as the cold or flu can turn into pneumonia.

There are many people with these disabilities that are living full and productive lives. They work, marry, have families, pay taxes, and deal with their disability. Others due to personality, environment, or lack of intervention become human door stops.

To get a feel for some of these you might want to check with some local resources. Let them know that you are writing a story and need to learn more about how people with a particular disability live.  Depending on where you live, you may not have all of the following but should have at least a few.

UCP (united cerebral palsy) Each chapter is an independent group, however most work with a wide range of disabilities.

Easter Seals is much like UCP, addressing many disabilities

Goodwill in some works with the disabled (as a rule adults only) not one of my personal favorites, but you never know who you might meet.

State office of rehab - Each state normally under dept. of human services offers services for people who are disabled. Including early intervention, education, independent living skills, and vocational services

The special ed dept. of you local school district, if you are in a small community there may not be much, however if you are in a larger metro area, there should be a good variety. The modern day approach to children is "mainstreaming"  (mixing disabled and non disabled together).

Special interest groups -The blind wrote the book on it, other disabilities have jumped on the bandwagon, almost every disability now has an organization that they can belong to.

Local support groups.

If you have the time and meet several people with the same disability, you will find there is a wide variance to the way people deal with their disability.  Many will be willing to talk to you openly about the subject.

The most important suggestion I can give you, is don't go by the books and the professional thoughts and opinions, go by the people who have walked the path. The people I worked with carried the label "unemployable", usually because some stupid test, or over educated person didn't think they were capable. As a rule I proved them wrong, and some of the folks learned to eat crow in a very gracious manor.

I'll close with some personal thoughts, it's not the body but the spirit of the person that determines if they will make it in the real world.  You don't miss what you never had, but if you lose something it can affect you much like a death of family member. The older the person, the more it will affect them.

When a person becomes disabled the process is much like a death, they often go through different stages of emotions, disbelief, barter (trying to make a deal with god), anger, sorrow, then acceptance. Some people get stuck in one of these, and never make the full cycle, this can be quickly noticed. Anger is a very common one, they are angry with everyone and everything, and are very hostel to the world. Sorrow can become self pity, and you end up with someone who think the world needs to provide for them.  A person who has reached acceptance, won't be happy about being disabled, but will have excepted the fact, and will be attempting to go on with life.

Children appear to deal with things much better than adults. However they must address a different set of issues. Children say what they think, so a disabled child must deal with his peers being very open about their questions and thoughts. Children also learn from adults, so if a child has heard a parent or teacher talk about something, they will often take it as fact. This can lead to some very hard times on the playground.

Hope this has given you a place to start. If you need some more information please feel free to ask. While I'm fairly well versed in the different disabilities, I also have a good background on adaptation and modification. (rigging things to work) While I have used high tech items, I've also designed many low tech (homemade and cheap) stuff too. Then there is the "language" issues. In the early days people were crippled, than they became handicapped and chair bound, now days you might get your head bit off for such terms! Disabled is pretty safe, but when referring to a person who uses a wheelchair, I would suggest "chair user". Most chair users aren't bound to the chair and will may take offense to the term.

Good luck, would love to know how it comes out.