“Nihil de nobis, sine nobis” – Nothing about us, without us!

Apparently when medication brings your blood pressure down into normal range, after 3-4 months of being insanely high, your body reacts as so you have low blood pressure. Or at least, mine does. So it’s been a few days since I last posted.

Thankfully, my body seems to have started to adjust a little though the irony of being on medication to treat the high blood pressure caused by another medication is a little tough to deal with.

Regardless, now that I can think somewhat coherently again I thought it was time that I resumed my posts. Back in June when I started this endeavour, I also started writing other pieces of non-academic prose and poetry. Some of those poems I’ve posted on here. I also tried my hand at writing for SEO’s but I didn’t enjoy writing to a formula so that didn’t last long, though I did make a total of $45.00 doing so!

I’m also proud to admit that some of those non-academic pieces have been accepted for publication. One for an online information site and another in a poetry anthology that will be published later this year.

However, in the back of my mind is a story. In fact lots of stories. As a consequence I’ve been doing some back ground research when I’ve been fit enough.

I started out innocently enough. I was very naive as it turned out. One of the premises of my stories is that sign language would be the main form of communication so I wanted to know how sign language was portrayed by other authors. As the grammar for American Sign Language (ASL) is different I wasn’t sure whether they would write it in ASL grammar or spoken English.

So being an academic, and a researcher, I started with finding all the books that I could with deaf characters. Thankfully, the internet makes that pretty easy these days and there are sites such as MyShelf.com that do a lot of the work for you in identifying such genres.

I’m still working my way through the book list! So far though I’m pretty shocked. Not one has actually done anything other than use spoken English. They may say that their character signed the words but they don’t actually seem to have any understanding of how sign language is structured or Deaf culture. Now, I will admit that I haven’t yet got to any written by any deaf authors, that I know of, so hopefully that will change. However, it got me thinking about the whole issue of how the disabled are represented in the arts.

A few weeks ago there was a huge outcry within the Disabled community because the Brazilians chose to edit pictures of non disabled models in their publicity for the paralympics rather than use disabled athletes or models. As I posted a while back, since when is it OK to pretend to be disabled?

Add this to the headline that for the first time, Quasimodo, is actually to be played by a Deaf actor and it’s hard to believe that it is 2016.

While theatre has long had a history of actors playing different genders and races to their own. Other than pantomime dames, it has been a long time since it was considered acceptable for a actors to play opposite genders, or for a white person to wear blackface. When then, is it still considered acceptable for non-disabled actors to play disabled roles?

Why is it that when authors write about deaf characters they describe sign language in spoken English rather than using sign language grammar? If they were writing about a character that spoke French wouldn’t they use French when speaking?

In fact the more I look into this the more I am concerned. There are university programs designed to study the disabled contributions to the arts, with specific conferences and performances as part of the program.

There are studies of the disabled in the arts and programs designed to incorporate the disabled in the performance arts. However, many of these are run by non-disabled people.

Given that we understand that it is inappropriate for non-native people to teach native studies why is this still OK?

The disabled are already highly unemployed and underemployed worldwide. Yet, many are incredibly well qualified. So why would you not hire a disabled person to run a disabled program? Who better to design an accessible building than an architect that uses a wheelchair, or who is deaf?

It’s time to bring disability out of the closet and fulfil the mantra:

Nothing about us, without us!

The Latin version of this: “Nihil de nobis, sine nobis” has origins going back to 1505, yet here we are 500 years later still trying to ensure that no policy should be decided by any representative without the full and direct participation of members of the group(s) affected by that policy. This involves national, ethnic, disability-based, or other marginalized groups.

That doesn’t just mean that the disabled should be actively participating in the design of artistic spaces but that they should be representing themselves within the arts as well.

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