To “I” Or Not To “I”

Recently I did a short piece thinking about writing in first person for people with profound intellectual disabilities – that is, writing things about people using the word “I” as if the person wrote it themselves. It’s been great to hear the conversation that this has started. I’ll pop up a pdf link later (but if linked it as an image at the end of this post – Thanks to PMLDlink for allowing me to do this, and Polly Samuels aka Donna Williams for her painting “Illussions of Control”).

In one discussion Nell Brown presented two different profiles of her daughter Tess as examples of two different practices. She agreed for me to share them here.

What’s your first impressions from the way these are written? Who do you think would be an appropriate “author” for each? What do you think are the pros and cons of each style? What might be the implications for supporting Tess?

“First person”

My name is Tess. I like to be given the opportunity to make choices for myself, but I also like out-of-nowhere experiences, and will become enthusiastic if handled with excitement and humour. I love music and dance (unless I am having problems with voices). People who work with me can offer to put music on, sometimes just having music on can draw me out. If I am in the mood I can dance around the living room for ages. I love praise and respond well to people who make me feel special and take time out to chat to me. I love enthusiasm. I love swimming, drama, friends and family. I love social occasions. I have a lot of hours to fill so this can be flexible f you are studying or working part time elsewhere. Come and meet me and we can see if we suit each other!

I am 30, can be very cute and have an intellectual disability and schizophrenia. I am not safe on my own. I tend to internalise and that is not a good thing. I am looking for someone to work with me who loves doing interesting things. I need help with my speech so studying speech therapy, physio therapy OT etc is an advantage. I am looking for someone who can work alongside my speech therapist in order to support me.

 

I would like someone willing to help me with my garden, cook with me and help me develop a range of skills. I love going out for massage but need a support person. Sometimes I am stair phobic depending on my medications working properly. I am on a ‘get fit’ regime, so you must be willing to be physically active – nice long walks (I am not very fast). Working with me on my ipad, taking photos of my day and making storybooks will be fun! I love wacky humour, I love adventure, love musicals and if you like these things, I am looking someone just like you! You need to be strong and resist the urge to buy me sugary or fatty things because I love healthy alternatives too and need your guidance!

Third Person
About Tess…. My daughters name is Tess. She likes to be given the opportunity to make choices for herself, but also likes out-of-nowhere experiences, and will become enthusiastic if handled with excitement and humour. Tess loves music and dance (unless she is having problems with voices). People who work with Tess can offer to put music on, sometimes just having music on can draw her out. If she is in the mood she can dance around the living room for ages. Tess loves praise and responds well to people who make me feel special and take time out to chat to her. Tess loves enthusiasm. Tess loves swimming, drama, friends and family. She loves social occasions. Tess has a lot of hours to fill so this can be flexible if you are studying or working part time elsewhere. Come and meet Tess and her family and we can see if we suit each other!

Tess is 30, can be very cute and she has both an intellectual disability and schizophrenia. She is not safe on her own. Tess tends to internalise and that is not a good thing. We are looking for someone to work with Tess who loves doing interesting things. Tess needs help with her speech so studying speech therapy, physio therapy OT etc is an advantage. We are looking for someone who can work alongside Tess’s speech therapist in order to support her.

 

We would like someone willing to help her in her garden, cook with her and help her to develop a range of skills. Tess loves going out for massage but needs a support person. Sometimes Tess can be stair phobic depending on her medications working properly. We have Tess on a ‘get fit’ regime, so you must be willing to be physically active – nice long walks (Tess is not very fast). We are looking for someone willing to work with Tess on her ipad, taking photos of her day and making storybooks. Tess loves wacky humour, loves adventure, loves musicals and if you like these things, we are looking someone just like you! You need to be strong and resist the urge to buy Tess sugary or fatty things because she can be coerced into quality food, as she loves healthy alternatives too but need your guidance as her personal judgement on food is not always in her own best interest.


People with profound intellectual and multiple videos – in online training

Last year I was honored to be asked to be part of Nick Lennox and team’s fantastic online learning course focusing on the health of people with intellectual disability.

https://www.edx.org/course/well-able-improving-physical-health-uqx-able201x

Here is my little piece of it. I hope it does positive justice to people with profound intellectual and multiple disabilities, enhancing understanding, respect and consideration of them and those people who support them.

Understanding Suraj – An invaluable resource for anyone supporting someone with profound intellectual and multiple disabilities (and others)

DVD cover Understanding Suraj
DVD cover

That person that I’m working with, I’ve got as much to learn from them as they have from anybody else around them. And I want to be open to that. And I don’t want their life to be a wasted life; that’s the other thing isn’t it. Somebody whose maybe going to live for 40 years and then die, and nobody managed to unlock that potential and nobody managed to get in there because that is just a wasted life. I don’t want that to happen, don’t have to have wasted lives do they. They’re human beings with just as much potential as anybody else, and that’s unlocking, let’s find out what’s in there. Let’s not let it be wasted; let’s learn from that person.  – Rebecca Leighton in Understand Suraj DVD.

I was so excited to receive my copy of Understanding Suraj: Uncovering the person behind multiple disabilities from NL Productions UK, and I wasn’t let down.

This is a 45 minute DVD presented in four parts, including a background of Suraj narrated by his father, an observation of Suraj, and unpacking the current approach to being with Suraj. The story is honest, showing the disturbing self-injurious behaviour that Suraj had used for years, and using the voices of support workers and therapists to talk how they now approached Suraj.

Some viewers may struggle with the various strong English accents of narrators in Understanding Suraj. While the DVD appears  to begin with subtitles, these don’t appear to continue (as far as I could see). While I’ve spent time with Graham Firth, one of the narrators, I did need to spend some time re-getting my ears around his northern accent. Similarly, just getting the quote above took me several minutes of re-listening to capture some of the phrases.

While the narrators discuss Intensive Interaction (Nind & Hewett www.intensiveinteraction.co.uk) as a framework underlying the communication approach with Suraj, it is not essential that you have background knowledge of the approach to follow the story. Following viewing the film, viewers may want to learn more about Intensive Interaction.

I recommend this DVD to anyone supporting people with profound intellectual and multiple disabilities, and particularly for those who may use self-injurious behaviours. I think this would be a great DVD for teams to watch and discuss. Some of the practices they see on the DVD may be the same as what they are already do, and some may be markedly different. It would be useful for teams to discuss whether they would consider using the methods with people they support, and unpack why they may or may not do things and the subsequent potential implications of these choices for them and the people they serve.

Speech pathologists and occupational therapists may also find Understanding Suraj an invaluable resource. It may challenge current practice or support ways of working. The DVD shows that dynamic interactions must be the centre communication supports (communication supports must go beyond personal communication dictionairies, chat books and object of reference).

I also think that this would be an excellent resource for staff at the NDIA – it gives such a rich picture of one individual, the experience of families and support workers, and the possibility of an improved life through working towards the best possible relationships between staff and the person they serve. These relationships need to be thought about, planned, informed and supported. Sometimes they occur naturally with amazing support workers. But too often, in line with Rebecca Leighton’s words (specialist speech and language therapist), the time is not given to unlock and spend the time to get to know the person in their full potential.

The DVD can be ordered through DL Productions UK – http://www.nlproductionsuk.co.uk/styled/DVD%20Understanding%20Suraj/. It is also available through Amazon UK, but this does not appear to be able to be shipped to Australia at the moment. A short intro the the video is also available on YouTube – http://youtu.be/inWvCsumQLk

 

Do adult services for people with severe or profound ID need a guide like this for social-emotional supports?

  
Does adult services need something like this document from Childcare services that makes explicit the needs and requirements of staff? https://www.kidsmatter.edu.au/sites/default/files/public/KM%20Linking%20resources%20C2%20Book_web_final.pdf