#rnld

Living Languages have created a Learners Guide grammar template, for people who want to create language-learning materials for their language. The Learners Guide is written in plain English, and includes extensive information about what could be included, and how to talk about it. The guide is designed for Pama-Nyungan languages, the most wide-spread language family in Australia.

From the Living Languages website:

The template has been written with Pama-Nyungan revitalisation languages in mind. We hope it will be used and adapted by communities for their own needs - giving life to, and showcasing the individuality and beauty of, their languages. It has been created for people to make it their own and share their language in a way that would best suit their community of language speakers and future generations.  

The reference group has designed this resource as a tool for Aboriginal and Torres Strait islander people working on their own languages. Please respect the people who are the authority for the language and follow their wishes and protocols if you are not from the language community.

We would like to keep a record of who has a copy of the template, so that if we make any updates or additional resources, or find any errors, we  can let you know.

The Learners Guide was a major project for Living Language in 2019. They had a team of people writing and reviewing the document. I helped out with some of the general sections – after writing a descriptive grammar it was an interesting challenge to help with a grammar specifically for learners.

The Learners Guide template document can be requested from Living Languages through their website. The materials have been specifically written with Australian languages in mind, but it could be adapted if you’re working on creating resources for other communities. 

Ten years after it first received funding to support Indigenous peoples in the documentation and revitalisation of their own languages, the organisation formerly known as the Resource Network for Linguistic Diversity has changed its name to Living Languages, and has a beautiful new logo and website.

There’s a bit of information about the motivation behind the name change in the Autumn 2019 newsletter:

“...we wanted our new name to reflect what we see in our work— the energy of the Aboriginal and Torres Strait Islander people who both care for and draw strength from their languages, and the living, growing languages themselves, with all their resilience and richness.”

This process has been lead by the staff of Living Languages, who spent a lot of time consulting with a wide range of people who work with Living Languages.

A brief overview of what Living Languages does, from the new website:

We contribute to the health and well being of Aboriginal and Torres Strait Islander communities through the services we deliver, by providing direct relief from the suffering and distress that arises from the loss of Indigenous languages and the subsequent alienation from cultural heritage and Indigenous identity. Our programs seek to facilitate the self-determination, resilience and confidence of Indigenous communities to develop their own specific solutions that foster healthy, engaged and independent Indigenous communities.

We strive to advance the sustainability of Indigenous Languages and to increase the participation of Indigenous peoples in all aspects of their language documentation and revitalisation through our training programs, resource sharing, networking and raising community awareness.

There’s more detail about the context of Australian languages and the history of the organisation on that page. You can also keep in touch with news and events, subscribe to the newsletter, and donate to support their work.

In the spirit of RNLD, Living Languages still have a resources overview page, and for people who use the RNLD mailing list that will still be maintained. The record of Linguistics in the Pub events will eventually be moved over to the site but for now we’ve made a record of them using the Wayback Machine.

Currently hitting the books so I can pass my OSCE. It’s the last hurdle I have to pass then I will be a registered nurse in learning disabilities.

Let’s begin this post with a boring but highly relevant title! This leads on to what is usually a fairly rambling post, but reaching the (title) point towards the end. 

My main focus of this post is the unbelievably weird and gentle and kind man that is my baby brother. 

There we are, being adorable. 

Charlie is 21. He works in Asda full time and has done for a couple of years now (if he reads this, I’m sure I will be corrected to exactly how many months), he’s the tallest of the family at nearly a foot taller than me. He is obsessed with musicals, doctor who, the stock market comparisons for different food stores, blue-link wikipedia binges, and of course - experiences in retail. He also loves hugs. And dogs! 

Also, for those who don’t know him (skip if you do), he has autism and learning disabilities. He’s also had hypotonia (low muscle tone) since he was a baby, so his posture continues to be poor and he wears splints on his legs and super-cool (and MASSIVE) pedro boots to support his weak muscles. He has (very well managed, currently) issues with obsessive compulsive disorder and anxiety and (the main focus of this post), he was recently diagnosed with ulcerative colitis.

So, let’s talk about this last point because it leads onto THE point. 

Ulcerative colitis is one of the inflammatory bowel diseases where your body has a reaction to normal bacteria, and believes it is foreign and starts fighting it, an autoimmune condition, causes inflammation and ulcers along the rectum/colon and upwards. It is life-long, and can go through long periods of not affecting daily life until a big flare up will (unless you’re Charlie), put people with UC in agony, spending most of their days on the toilet, often anaemic due to bleeding inside the colon, and sometimes results in hospital admissions for anaemia and dehydration - but for people diagnosed with UC results in a huge increase of medications during a flare up to get on top of it, limited social life or work during that period until there is a handle on it again. 

Now, for Charlie’s and your sake I won’t go into the details of his bowels - but I will tell you that symptoms for this had began probably as far back as last May. Charlie had been excreting blood ever since, and spent a good portion of his day in the toilet. To begin with, it wasn’t that awful or that obvious - and we, his family, did not know. Fast forward to December 2018, and we are all sufficiently concerned about it. Mum had taken him to the GP, only to be fobbed off that it was another issue of constipation and ‘probably’ haemorrhoids (obviously, they did not check), just take extra laxatives. Charlie was spending a huge amount of his work time in the toilet by this stage, and his employers are amazing with him but it’s not ideal, he has also had embarrassing episodes occasionally, and we - his family - were all too aware of the blood that continued leaving him due to the patterns around the toilet (TMI?). So, when my sister came home after christmas we started a bowel chart for him - and the truth was outed, many times he was visiting the toilet, it was just blood and nothing else. We also got a true picture of how many times a day. Then, I took him back to the GP, a summary of the bowel charts in hand and decided on not leaving until further testing had been ordered. It was, and then a couple of weeks later I attended the colonoscopy with him where - yes, it was confirmed, that our poor boy has ulcers extensively, and that was the cause of the bleeding (another concern was obviously the C-bomb), treatment was to be commenced immediately.  Now Charlie will be on life-long medication and management, but a lot of that will be done by us his family. He can take the tablets, sure, but he will not notice or be particularly bothered for another flare up so we have to keep on top of that and manage any other complications. Mum has taken him to follow up appointments at the IBD clinic, and thankfully the GP are now taking it seriously. 

But this leads me onto my point. 

Adults with learning disabilities qualify for annual health checks, and they are SO SO important. But the how and when and who with is important too. Charlie is a very able man, he’s really intelligent and he works - but without us (his family) being advocates for him, we still would not be at this stage. People with learning disabilities need their GPs to advocate for them, but this requires an understanding of the processing abilities of that individual and - we all know - GPs do not have time. Charlie comes across so able, so when healthcare professionals ask him questions about his bowels or other health aspects, he will answer the question - but that doesn’t mean he’s understanding and often the point is missed. Abby (my sister), when discussing the issues with him broke it down into words and phrases charlie understood, so we could get a proper picture of what was happening, and when I took Charlie to the doctors and for his colonoscopy I spent the time interpreting to Charlie what the doctors meant, and vice versa, and re-wording questions to Charlie so he could give the true answer. Sometimes that is all being an advocate involves. Without my mum, my sister and I doing this, we still probably wouldn’t have gotten any further. Charlie does not feel pain, part of his autism (and no, all people with autism are not the same and some feel pain acutely), but that meant he wasn’t giving standard answers or putting the urgency on that most people with this condition would - he was just getting on with daily life. 

This is a problem, not just for Charlie, but for people with a huge range of disabilities and learning disabilities - and it’s vital those who know them become advocates. An annual health check is great, but without an advocate for those who need it, huge things can still get missed - and a reminder that people with learning disabilities have a life-expectancy 20 years shorter than those without - and a big part of this comes down to their health needs not being met. If you are a carer, a family member, a friend, a nurse, a doctor, an OT, etc etc - any person close to those with learning disabilities, with a professional responsibility and without, just check that they have a good advocate, and talk to them and their advocate about concerns so that they are properly treated, promptly - and if they don’t have an advocate, it is our shared responsibility to ensure somebody steps up to the plate!