Jenna,
I'm looking forward to this write-up from you, but please don't stress over it. We've been dealing with MC a long time, and we will wait patiently. Thank you so much.
Mary

Type of Myotonia: Thomsens

Country: USA

People are judgemental by instinct but there is a world of difference between an informed and uninformed judgement. That wheelchair users are used as a benchmark is unfortunate but also understandable. The wheelchair is the accepted symbol for disability concessions, such as parking spaces, toilets, low floor buses, and lifts. You can see the symbol almost everywhere these days.

This in no way excuses people’s ignorance about disability, however, neither does it give them a licence to judge whether another person is truly disabled if they lack the necessary medical knowledge or a personal experience of a disabling condition.

I have Becker’s variant Myotonia Congenita and I am an occasional wheelchair user, but that is because I also have Spina Bifida Occulta. As an MC sufferer I don’t need the wheelchair, I struggle with stairs, ramps, using public transport, crowds, being on my feet for too long, being sat down for too long, episodic muscle weakness and getting tired quicker than other people. I don’t need a wheelchair to deal with these problems, I have coping strategies instead; but I am still disabled even without the Spina Bifida.

I am disabled because I cannot do normal things easily. I cannot drive a car because my symptoms are too severe. My mobility is significantly impaired and this leads to me not doing certain things either because I know that I am unable to or because it would be dangerous for me or, just as significant, it might lead to an embarrassing situation.

The Social Model of Disability identifies social barriers as the true cause of disability. There are three main categories; environment, such as buildings and services being made inaccessible, organisations being inflexible with regard to their practices, policies and procedures, and finally people’s attitudes leading to stereotyping, discrimination and prejudice. I have encountered all of these in one instance or another, I expect the majority of people reading this have as well!

The statement “it’s not like you need a wheelchair” in no way invalidates another person’s status as disabled. The truth is that long-term wheelchair users do not make up the majority of disabled people and this especially true if you include people with mental health problems. If anything this statement is an admission of ignorance on behalf of the person who uses it.

Type of Myotonia: Becker's Variant

Country: England

Thanks for that amazing post Jenna. I was really inspired after I read it. I think what you have touched on is a topic that the general public need to be educated on for all people with disabilities that are not as visible as people who use some sort of assistance device like wheelchairs, braces or assistance animals. People who do not have disabilities are both uninformed of what it is like to have a disability that is not visible, and they are also suspicious of people who use "excuses" for getting out of work. I think Jan's idea of putting your post on the web-site is a great first step in educating other non-disabled people on this topic. I'm curious to see where else you could take this? The second problem that people are suspicious of us as using our disability as an excuse to get out of work is another subject altogether.

The idea that people with MC use their disability to get out of work is a big problem that we face in our society. It is part of a larger political issue that has been debated since social welfare programs went into effect in the early part of the 20th Century. I won't delve into that arena, other than to say that those who take issue with someone being given something-wether it is a smaller physical workload, or some sort of financial assistance-are only dealing with their own jealousy, plain and simple. They are jealous that someone is getting something extra that they aren't getting, because deep down inside they would like to be at least offered that same advantage. When they look at someone with MC, it appears that the majority of the time we move just like they do and so why should we get any special treatment. Of course they can't see the exhaustion and the pain that MC sometimes causes, unless they look really closely.

The reason why they are ok with someone in a wheelchair getting special treatment is because to them, someone in a wheelchair, has it much worse off then they do. It is much easier for them to feel pity for that person, because they can't imagine their life if it entailed confinement to a wheelchair. I've heard countless people without disabilities say that if they ever became wheelchair bound they would kill themselves; they wouldn't see a reason for living.

We with MC are not given that same consideration; in fact, I think we are often greeted with skepticism more than most disabled people, because the symptoms of MC are not consistent. It goes away, and then it comes back. It locks us up and then we move around fine. I've often wondered how many people really believe me when I tell them I have a muscle disease, because the first thing people usually say to me is "your joking right?" Any sort of skepticism inevitably plays into that suspicion that we are just using our muscle disease as an excuse to get out of work.

Type of Myotonia: Thomsen's

Country: USA