I liked the progression from a whimsical idea like the philosophy of the disabled to the achievement of a battle cry for an actual movement. I’m glad that you tested the water first, I did something similar concerning the psychology of disability and found something similar. I also found it curious that such a subject has remained in the preserve of the ivory towers and seems to have no impact on the daily life of disabled people; certainly that is my experience.

As to the concept of disability creating opportunities for the extraordinary, that is a conclusion that I came to from a very different angle. I have pondered the nature of disability from a philosophical perspective for many years and needed to find an explanation for the existence of this phenomenon that was free from judgment or mysticism, such as reincarnation, which may carry with it an inherent judgment as well.

My thinking started with why do I have Myotonia congenita? The simple answer is, a mutation occurs on the gene CLCN1 on chromosome 7; but why do mutations happen?

The Theory of Evolution states that slight differences occur in a given population of animals. Mostly these differences are hardly noticeable, however, it sometimes happens that an animal is born with an advantage over its’ peers that can be exploited by a change in the environment. An example of this might be a primitive ancestor of the horse where one individual has slightly longer legs resulting in being able to run faster. The as the bush retreats to be replaced by grassland these primitive horses find themselves exposed to predators. The horse that runs the fastest lives longest and passes on its’ genes more successfully.

Not all of the resulting offspring might have longer legs, but there are more such animals in the following generations. As the environment continues to change these animals continue to flourish and the mutation from short to long legs is completed over a period of millions of years.

This is an example of successful species adaptation, but what does it have to do with being disabled? The answer is in the process of mutation; it is a two edged sword.

Not all mutations are beneficial. Some seem to be quite harmless and some are definitely deadly. In between those two markers lies disability. It’s not just humans that are born with disabilities, probably every animal species is but we just don’t get too see them very often. This is because in the wild animals born with disabilities rarely survive for very long. Some are killed by their own kind just for being different, some cannot escape predation, and others probably just lack the ability to survive beyond being juveniles. Of course some domesticated animals and those held in captivity have been recorded presenting symptoms that in a human would be termed disabilities, blind dogs for instance.

Mutation of DNA is necessary for species adaptation to work and it is that that underpins the Theory of Evolution. If DNA could not be changed between generations than all animals would remain exactly as when they first appeared. There would be no exceptional examples as all would be made to exactly the same pattern from exactly the same materials. It is because the process of mutation does occur that exceptional individuals do appear, but so do the disabled. You can’t have one without the other.

Disability does indeed create the opportunity for extraordinary but it should not be forgotten that the existence of one mutation does not preclude the existence of others and they don’t all have to be exclusively beneficial or detrimental. Dr Stephen Hawkins has motor neurone disease but he also has an extraordinary intellect. The boxer Muhammad Ali had an exceptional physical attributes destroyed by Parkinson’s disease. Without the ability of DNA to adapt and develop, to mutate, neither individual would probably ever have lived.

Type of Myotonia: Becker's

Country: England

Hi Jim, I've read your blog, and I suppose I have a few questions for you.

Do you believe people with disabilities are viewed poorly by most of the population of "able" people?
Do you think most disabled people view themselves poorly as well?

What would you wish to be the outcome of starting such a movement where the disabled are pushed farther into the forefront of media attention? Also, do you think there would be some issue with the general use of the term "disabled" in such a movement given the vast differences in the nature of disabilities one may have?

Do you think everyone needs more than love and respect from family, friends and coworkers to feel appreciated and valued?

Country: USA

Hi Jamie,

Thanks for reading my blog. These are good questions.
Too be fair, I think the answer to the first two questions is it depends upon the person. It depends upon their outlook on life, and how they view limitations in their own life. In response to your last question, I believe that the amount of love a person has in their life greatly improves their outlook on everyone.

The point of disability creates opportunity for the extraordinary, is more about believing in the best of what a situation presents to us, to anyone. It is a concept that can be applied to all sorts of things. For example, "abandonment creates the opportunity for great love," or "loss of a loved one creates the opportunity for great love." In both of these examples, people go through great pain that has the potential to negatively affect their lives; however, if they work through the pain, then they will come out the other side stronger than when they went in. Now this is an important point. If it were not for the pain, then they would not have become stronger. I know this is a strange way of looking at things, but the pain is literally an opportunity for growth. It is all in how we look at the things that happen in our lives.

What I believe, is that to work through the pain and overcome it, people almost have to make a promise to themselves, such as "because this has happened to me, then I will do this; because this has happened to me then I will make something extraordinary happen."

In regards to the media attention, this is partly why I wrote this blog. For the majority of my life, I asked "why do I have this condition that has caused me so much anguish with people?" It just didn't make any sense. Another way I would state it is "what is the point of my existence, if I am slightly lesser version of other people?" On TV, I was both annoyed and inspired by the amazing, extraordinary things I would see people with disabilities accomplish that no one thought they should be able to accomplish. The reason why I was annoyed was due to how the media told the disabled person's story. It was always, "isn't it amazing that this person has been able to overcome these challenges in their life?"

The reason I was annoyed by this, is that I always saw the connection between the person having the disability and why they were able to achieve the amazing things in their life. I often thought that the disabled people would probably not have accomplished those things if it weren't for their disabilities. It was obvious to me that it was their disabilities that motivated those people to do what they did.

If you read the biography of Jerry Jones, the owner of the Dallas Cowboys, you'll find that he was born very poor. In his life, because he was born very poor, he was motivated to never be poor again. If he was born middle class, he might still be the owner of the Cowboys, but the likelihood of that happening would have been less likely. Because of what I have gone through in my life, I believe that Jerry Jones is the owner of the Cowboys, mainly because being very poor motivated him to become very rich. The pain of being poor created the motivation (opportunity) to become wealthy. I wish the world was able to see things in this light. Part of the problem is the media treats each case like it is completely separate from all the other times it happens. They do this, because it is more sensational, more dramatic for people to believe that these are isolated instances. I believe this "opportunistic" kind of behavior is actually quite common, but if they media sold that in their stories, people would become bored with those kind of stories.

In regards to the word "disabled," I don't really like the word myself, but I see it as one of those things that the disabled community is not ready to change it's opinion on, and I just can't think of a better word that describes the situation. I personally prefer, and do whenever I can, to call MC a condition. I have the condition of Myotonia Congenita. It has it's challenges, some of them I have overcome, others I am still fighting with, and it also has had it's extraordinary affects on my life. One of Myotonia Congenita's extraordinary affects in my life is that I want to write screenplays that change the world. Another is that I am very motivated to change the world for the better, period. This desire is very strong, and I believe the MC has created this extraordinary opportunity for me. The older I get, the happier I am for being given the opportunity to experience MC.

Type of Myotonia: Thomsen's

Country: US

Hi Jim, thanks for the reply! I understand your points much better now, and agree completely. I'm glad you took the time to explain! :)

I'm 27 years old and just now getting over my fear of letting people know I have a disease. My mother has it as well, but never really spoke of it, so neither did I. I have been married for 6 years now and actually just told my husband's family about it a month ago. We are very close and have rarely gone a full week without visiting at least once, so it amazes me that they never noticed on their own that something was different! But I suppose I've gotten pretty skilled at hiding it and unless someone knows what to look for, well maybe I just seemed slow LOL!

I actually just had an EMG this morning, and it picked up the myotonia. The noise on the machine was incredible, and I was amazed when the doctor told me that on normal muscle it is quiet! It sounded like world war 3 was going on in there LOL! Anyway I suppose I am excited because I finally have some sort of confirmation of my disease, and I am also waiting on a call from Athena labs to have the DNA work done.

I intend to post here more often in the future. I've been following these forums for a while and I am very grateful for them! I think a good bit of my courage to finally tell people about my myotonia came from reading some of the posts on here. I've spent my life being embarrassed about showing that I am different, and not participating in so many things because I was afraid people might "find out". It is such a freeing feeling to finally let go of that!

Country: USA

Jaimie:

I was dive bombers and Harley Davidsons on my first EMG. They didn't even have to touch the needle...that was when the myotonia itself was about at it's worst.

Now I'm a distant prop plane that has trouble starting.

I'm curious, what type of reactions have you gotten when you've told people?

Type of Myotonia: Becker

That's about what mine sounded like! And the doc wasn't moving the needle either it just kept going. Sounded like a war movie where they're bombing a city, then somewhat like a motorcycle convention.

As far as the reactions, I guess the most common was "why didn't you ever say anything sooner?". I have not noticed any type of negative reaction (or pity, I don't want that either), just curiosity.

I don't really know why I was so afraid of talking about it. I had a LOT of embarrassing moments as a child, such as falling out the school bus stairs, falling down the bleachers, having teachers constantly yell at me to hurry up when I was walking or going up stairs, looking like a total geek trying to play volleyball or softball in phys ed.. I suppose I must have just figured if people would laugh when I showed my "difficulties", then I had to hide them. And I was usually pretty good at that, though I had to constantly pretend to be absent-minded like "oh, did I drop something? Let me look ...", you know, stall for time until my legs would work LOL.

I used to think my legs were the most embarrassing as a child, now I think it's my neck, face and eyes. I make sure not to put my hair up on really bad days, because when I turn my head my neck will bulge with muscle and tendons all tight and I look like a freak standing looking at canned peaches in the grocery with my neck bulging like that. So I wear it down to cover it. But my eyes and jaw are different too. I sometimes wonder how many people I have frightened when I suddenly have to talk to them after looking down at something for a while. I will look up, then my eyes get stuck in this bugged out position, and I already have kinda big eyes to start, then my jaw and tongue stiffen up so I'm slurring my speech through clenched teeth LOL! I've got a lot of "are you ok?!?" in situations like that. Now it just makes me laugh though.

But after many many times of total embarrassment and constant worry, I just got tired of it all and decided I am who I am and I'm going to be this way the rest of my life, so I'm sick of hiding it. I feel much better now too, regardless of the number of people I have told, just to have that resolved in my mind.

Country: USA