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.


Age-appropriateness: Enabler or barrier to a good life for people with profound intellectual and multiple disabilities?


I’ve just published a new article on the problems with age-appropriateness concept. Hope it gets people talking about the pros and cons, rather than just accepting that because policy says it has to be it has to be.
Forster, S. (2010). Age-appropriateness: Enabler or barrier to a good life for people with profound intellectual and multiple disabilities? Journal of Intellectual and Developmental Disability, 35, 129-131. doi: 10.3109/13668251003694606

Feedback from Master Class

Last Friday I went to the Master Class at Latrobe Uni by Jim Mansell about his recent report “Raising our sights: Services for adults with profound intellectual and multiple disabilities”.
There was probably about 50 people there, with lots of people from Yooralla and a handful of therapist colleagues.
Jim did an overview of the report, then showed a DVD that goes with it (I’m trying to get hold of this), and then we did small group discussion on themed areas and their relationship to Victoria.
It was great to hear someone being specific and using the term profound intellectual and multiple disability, which I think does much to ensure a shared understand of the group and launch off lobbying. Jim was also very good at explaining the context of the report – it is written for policy makers, in language that hopefully they can understand and act upon – it is not a practice guide.
If you want to have a look at the report you can download it from http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_114347.pdf. The video is supposed to be linked in the future – it will be an excellent resource showing some good big scale practice (e.g., use of personal funding for shared accommodation) and small scale practice (e.g., some really nice interactions with the people with PIMD)
sheri

upcoming event – Raising Our Sights

Cross posting this event that might be of interest (related to below mentioned report)
Raising our sights: services for adults with profound intellectual and multiple disabilities
Professor Jim Mansell
Friday 16 April 2.00pm – 5.00pm
Presented by Professor Jim Mansell, Director of the Tizard Centre, University of Kent
Implementation of new government policy for people with intellectual disabilities in England (‘Valuing People’) after 2001 has not made sufficient progress for people with more complex needs. A revision of the policy has identified this (‘making it happen for everyone’) as a goal. One of the groups identified as not receiving better services quickly enough are adults with profound intellectual and multiple disabilities. This master class describes the results of a review of services for adults with profound intellectual and multiple disabilities and its recommendations for action. Participants in the master class will have the opportunity to assess Victorian policy and practice in the light of the issues identified.
Enquiries to Professor Christine Bigby, C.Bigby@latrobe.edu.au – bookings essential

Learning from mistakes abroad


Toward the end of last year Beverly Dawkins published the following article: Dawkins, B. (2009). Valuing Tom: will Valuing People Now change the lives of people with profound and multiple learning disabilities? Tizard Learning Disability Review, 14(4), 3-12.
It is a response to the UK Valuing People Now policy shift and its impact on people with PIMD in the UK. It highlights the many ways in which the current policy has let down people with PIMD:
– decreased access to day services
– poor planning
– continued discrimination in health context leading to uneccessary pain and, at times, death
– continued inadequate access to advocacy
– …
New initiatives attempting to improve the lives of people with PIMD in the UK are highlighted: Emerson’s demographic study, Mencap’s various studies…
Although this is based in the UK, I believe this is highly relevent in the Australian context, both in terms of current and future issues.

Paradigms and pragmatics

I’m busily working on my thesis. Read this quote, which I thought was worth sharing.
“Although issues such as community-based supports, quality of life, and normalization remain equally important to nonambulatory persons with PMR [profound mental retardation], a failure to plan for their day-to-day needs can result in decreased access to appropriate health-care services, deterioration in functioning, and overreliance upon a group of poorly trained and isolate caregivers”
– Kobe, F. H., Mulick, J. A., Rash, T. A., & Martin, J. (1994). Nonambulatory persons with profound mental retardation: Physical, developmental, and behavioral characteristics. Research in Developmental Disabilities, 15(6), 413-423. doi: 10.1016/0891-4222(94)90026-4