DRILL Blog and News

News: Chronic Illness Inclusion Project Newsletter (November issue)

Launching “energy impairment”

From now on, “Energy Limiting Chronic Illness” is the term we’ll be using to better represent you and voice your concerns. From all our focus groups and survey responses, the concept of energy impairment seems to best convey what people with chronic illness want policy makers and society in general to understand and take account of. We were looking for a term that is not disease-specific, but conveys what it means to identify as a “spoonie”.  In the language of Spoon Theory, energy impairment means lack of spoons, due to extreme fatigue or fatiguability, often involving pain and cognitive difficulty.

Energy impairment is not the same as everyday aches and tiredness and can be extremely debilitating. Until this is understood by those who make decisions about our lives, we will continue to be excluded from policies and services designed to address disadvantage among disabled people.

Next steps

We have now finished the focus group research and the data collection phase of the project. It’s time to start sharing the findings with you in a series of blog posts I’ll be writing in 2019, as we develop our manifesto for changing policies and perceptions around energy-limiting chronic illness. We’re planning ways to consult with you to ensure we reflect all your views and cover your priority areas for change.

This is the time to grow our movement as we develop the manifesto. Please share our new website in your networks and encourage your followers to sign up to our mailing list and like our Facebook page.

Write for our blog series

We are looking for more contributions to our blog series. This time on particular themes:
Belief and disbelief with chronic illness – how important is to be believed about our illness? What are the consequences of disbelief? Where are the battlegrounds of belief/disbelief in our daily lives?
Access – what are the changes we need in order to get out and about more easily with energy impairment. You could consider using mobility aids, accessing public spaces, using public transport, visiting shops and restaurants. Think about changes in public attitudes as well as practical adjustments.

If you want to write a blog post please email me at [email protected] with the subject heading “blog post” and I’ll pass on your email to our blog editor, Fran Halsall.

Thanks and best wishes,
Catherine

Please click on the link below for further information

Chronic Illness Inclusion Project

Also visit the project page by following the link http://www.drilluk.org.uk/chronic-illness-citizenship-mobilising-collective-voice-social-change/

Vlog: Wiltshire Centre for Independent Living

The ‘ImaYDit’  project has produced the following Vlog providing a greater insight into the transition from childhood to adulthood for disabled young people. It is coproduced with up 10 young disabled co -researchers who are engaging with up to 50 young disabled participants to explore the opportunities for moving forward into independent lives.

For further information about the project please follow the link http://www.drilluk.org.uk/imaydit-i-made-imagining-young-disabled-peoples-transitions-time-major-societal-change/

 

Blog: Exciting ongoing research: 4 Nations Research project on attitudes and disability

Northern Ireland section: ‘‘Is It Me?’ How do attitudes in the adult social care system impact on the independent living choices of disabled people’.

This blog is an update on the exciting project regarding attitudes towards disabled people in the context of adult social care that we are currently conducting. The project is funded by the Disability Research on Independent Living and Learning (DRILL) and the Big Lottery Fund, and is led by Disability Action NI (DANI). The project has the ambitious goal of conducting co-produced disability research, by setting up a Research Partnership comprised of disabled advocates, activists and a representative of the Northern Ireland Social Care Council (NISCC). The Research Partnership makes all the decisions about the project together ensuring that the lived experience and expertise of disabled people is always prioritised.

History and structure.

The ‘Is It Me?’ Project started in May 2018 and the final report for the project will be ready in September 2019. The project has provided a great opportunity to discuss the under researched topic of attitudes and their impact on independent living choices, at a time when the adult social care system in Northern Ireland (NI) is being reformed. The project is divided in four stages: stage 1 is focus groups with disabled people; stage 2 is a focus group with professionals in the adult social care system; stage 3 is individual semi-structured interviews with disabled people; and stage 4 is an online survey for social work and social care workers. Ethical consideration and approval has been sought and successfully granted by the independent DRILL Ethics Committee, comprised of experienced disability studies scholars who have advised us on how best to conduct ethical co-produced disability research.

What we have done so far.

We have completed stages 1 and 2 of the research, and the experience for both the Research Partnership and the participants has been positive and very informative! We facilitated four focus groups with disabled people in several locations across NI (Belfast, Cookstown and Derry/Londonderry). We engaged with 28 disabled people in these focus groups and had passionate discussions about the types of attitudes disabled people have experienced and how these attitudes can be both a barrier and an enhancement to independent living. We have spoken to people with various disabilities and long term conditions, who come from all corners of NI, and the various perspectives provided has ensured that the focus groups are shared and inclusive space.

We also facilitated a focus group with professionals in the adult social care system with the help of the NISCC. We wanted to speak to managers in the adult social care system, in order to get a rounded picture of how people perceive attitudes as either a barrier or an enhancement. What was fascinating about this focus group was that the managers recognised many of the issues and positive examples raised by disabled people. This has which confirmed that a vast majority of participants in the adult social care system would like to see it reformed, to account better for the impact of attitudes on independent living choices.

What comes next.

Our next stage will be stage 3, or semi-structured interviews with disabled people, where we will continue the discussion on attitudes and their impact on independent living in much more depth. The interviews will start at the end of January 2019 and will take place over a few months. We aim to get in touch with many different people, in order to give a platform for some voices that do not get heard often. We are excited about the opportunity to research attitudes further and put forward the lived experience of the participants at the core of our final recommendations.

Contacts

If you are interested in hearing more about the project, or if you want to get in touch with the Research Partnership, please contact the lead researcher Ivanka Antova from DANI at [email protected]org, or by calling 028 9029 7880.

For further information on the project please click on the link http://is-it-me-how-do-attitudes-within-the-socail-care-system-impact-on-the-independent-living-choices-of-disabled-people/

#DRILL HASHTAG FEED

Tweets from @drill_uk

Spinner Loading new posts...
DRILL UK DRILL UK @drill_uk

Are you a researcher in a #Drilluk funded project? @Disabilitywales is conducting research into the experiences of… https://t.co/br7vwcC45Q

4 days ago
DRILL UK DRILL UK @drill_uk

What’s Roger Federer, heavy metal, shopping and body boarding got in common? Come along to the #Drilluk Disability… https://t.co/XBIWLijOZ2

4 days ago
DRILL UK DRILL UK @drill_uk

Come along to the #drilluk & @UniAtypical Disability Talk Show, have your voice heard & lets help change attitudes.… https://t.co/ZU8xAjohCP

6 days ago
DRILL UK DRILL UK @drill_uk

#Drilluk Is the world’s first major research programme led by disabled people. We are a 4 nation programme & are ve… https://t.co/J02a9fep4S

2 weeks ago
DRILL UK DRILL UK @drill_uk

Thank you @mentalhealth a #Drilluk & #TNLComFund funded project for this great blog highlighting the important rol… https://t.co/IKNYRNWoUi

2 weeks ago
DRILL UK DRILL UK @drill_uk

Happy #InternationalWomensDay to all ur wonderful colleagues within the #Drilluk Programme & partner organisat… https://t.co/caovmxkiwi

2 weeks ago
DRILL UK DRILL UK @drill_uk

Take a look at this great blog from @apda_UK a #Drilluk
& #TNLComFund funded project, about their input at the UN’s… https://t.co/qyBqwcfDvC

3 weeks ago
DRILL UK DRILL UK @drill_uk

@chronicinclude you are very welcome. It is our pleasure to work alongside and support all the great work undertake… https://t.co/vWQPhvYJuW

3 weeks ago
DRILL UK DRILL UK @drill_uk

Great event. #drilluk very proud to see all the hard work being shared! #mhf #praxiscare #qubssesw See all 32 DRILL… https://t.co/Gn28rBJ9Kx

3 weeks ago
DRILL UK DRILL UK @drill_uk

Thank you
@WheelchairVista& @chronicinclude
for such a powerful blog showing the stark realities & impact of “not… https://t.co/50tYDQWGg3

3 weeks ago
DRILL UK DRILL UK @drill_uk

Thank you @WheelchairVista & @CforWR for such a powerful blog showing the stark realities & impact of “not being b… https://t.co/c0avVKvBRM

3 weeks ago
DRILL UK DRILL UK @drill_uk

#HappyStDavidsDay from the #Drill team to our Welsh colleagues @DisabilityWales and the fantastic Welsh projects th… https://t.co/1jzc19j7XJ

3 weeks ago
DRILL UK DRILL UK @drill_uk

The #Drilluk programme is delighted to announce that we will be taking part in The Disability Talk show… https://t.co/BkydhjCSE8

4 weeks ago
DRILL UK DRILL UK @drill_uk

Not long now @Access_Day on 16th March! We at #Drilluk a UK wide Programme led by disabled people, for disabled peo… https://t.co/NYlhkkenxQ

4 weeks ago
DRILL UK DRILL UK @drill_uk

The whole #drilluk Team would like to wish @AntovaIvanka the very best of luck in her new role & say a massive than… https://t.co/FdH9qrn1mL

4 weeks ago
DRILL UK DRILL UK @drill_uk

Please take a moment to look at this online letter from @changepeople_ to the Ministry of Justice highlighting the… https://t.co/P0f6ZjsP93

4 weeks ago
ALLFIE ALLFIE @ALLFIEUK

Our online questionnaires on #SchoolAccessibility close at the end of Feb so get your views in now! 📢… https://t.co/OQ1vZEx3D2

1 month ago
DRILL UK DRILL UK @drill_uk

What do you call a researcher with learning disabilities?
Have a look at this blog https://t.co/TBA2FrKSeL from… https://t.co/zg2plkUfpR

1 month ago