SNN July 2018

THE BAIL BULLETIN
HAPPY MIDYEAR GREETINGS FROM ALL OF THE BAIL TEAM!
In 2018 the BAIL team had the privilege of meeting with the Hon
Carmel Sepuloni (Minister for Social Development and Disability
Issues) twice. The first was in April at the Beehive alongside the
Hon Iain Lees Galloway, and the second meeting was in May on-site
at Burwood Hospital campus. We were able to give Carmel a tour
of the Spinal Unit, and talk to her about the work we do at BAIL.
It was a great opportunity to highlight our dedication to research
based advocacy and reiterate the need to address the inequality for
people with a disability on non- ACC funding.
In early 2018 BAIL hosted a very successful consumer forum
which was attended by a variety of people connected through the
experience of living with a disability. The purpose of the forum
was to understand what the most important research priorities
were for people living with disability, and better understand how
to make research more engaging. Based on this forum we have
developed a survey asking people to rank the topics they consider
should be most prioritised by researchers. We have received great
feedback so thank you to everyone who has participated to date. If
you would like to complete the survey please visit:
https://www.surveymonkey.com/r/ResearchPrioritiesSurvey
KNOWLEDGE INTO ACTION
Rachelle Martin has recently joined the BAIL team as a Clinical
Researcher. Rachelle has just completed her PhD which evaluated
the effectiveness of Therapeutic Horseback Riding (THR) for
children living with the experience of disability. In summary,
findings from the research suggest that THR contributes to
improved participation in valued life roles for children experiencing
disability, regardless of their diagnosis. THR was found to be an
accessible activity, allowing meaningful participation for children
with a disability and riders experienced the THR therapeutic
landscape in a context which promoted their capacities and
strengths, rather than their difficulties. THR also provided
opportunities for a broad range of learning experiences, with
the child playing an active part in their own learning within the
intervention. These opportunities contributed to a rider’s enlarged
self-concept regarding how they moved, what they perceived
themselves to be good at, who they connected with, and how well
they coped with change.
Rachelle had the privilege of reporting back to the New Zealand
Riding for the Disabled Association (NZRDA) Board and at the
NZRDA national training seminar for THR coaches, therapists,
volunteers and regional board members – turning research into
action! It was valuable to be able to talk through the key findings,
and then to start to discuss in what ways the conclusions and
recommendations could be implemented within national policies
and processes, and in how THR is delivered within each of the 56
RDA groups spread across NZ. A real highlight was coming away
with a collection of questions and suggestions from people who
attended the workshop. These will help guide the development
of a range of resources (e.g. online videos, information sheets and
training packages) to be used across the NZRDA organisation.
So far in 2018, BAIL has conducted many interesting and
interactive workshops and presentations at Burwood Hospital.
Videos of our lectures and presentations are posted on our
website, so please check-in and also make sure to keep up-todate
on BAIL’s activities www.burwood.org.nz. Please contact our
Operations Manager, Kathy Duncan, if you wish to be added to our
newsletter subscription Kathy.Duncan@burwood.org.nz
From all the BAIL team, we wish you all the best for the rest of the
year!
POEM - PAIN
Pain. What words can be used to describe this feeling?
Burning. Searing. Encompassing. Overwhelming. Tingling. Isolating.
Withdrawn. Subdued. Limiting. Scary. Stinging. Frustrating. Angry.
Hopeless. Beaten. Cold. Unable. Spasm. Shaking. Uninspiring.
Embrace it, accept it, and fight it. Don’t let the flame go out and
don’t let the bastards get you down.
This experience, this being in the world, is all encompassing and
very powerful. It takes over your existence, your ability to think,
your ideas, your focus, your desires, your hope, your identity.
You disappear.
It severely limits your ability to be, and interact with, your family
and others around you. The smallest tasks are completely
overwhelming. Just opening your eyes is a success. Concentrating
and interacting in conversation is fighting back. Having the energy
to think of ways to mitigate the pain is exhausting: even painful.
A hot cup of tea. A hot shower relieving my head, my neck, and
my shoulders. Stretching, arnica cream, medication, warm weather,
sunshine, silence, laughter, and another hot cup of tea. The
painkillers are starting to take hold and the world slowly comes
into focus. Ideas enter my mind. Inspiration begins to return and
the flame burns brighter.
I feel hope: there is beauty, there is future, and there is love
from those around me. There is collective resistance against the
challenge; there is strength. There are no rules and there are no
limits: the world and life really is an opportunity to be explored: is
there a better panacea than that?
(Anonymous).
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