Blog: Centre for Welfare Reform Issues around Chronic Illness and Disability.

The Chronic Illness Inclusion Project ran two extended online focus groups, each running over an eight-week period, where people could come together and explore issues around chronic illness and disability.

The online aspect of our research wasn’t for reasons of cost or convenience, it was fundamental to our aim of reaching an invisible housebound population. We wanted to include people who are often left out of traditional consultations and focus groups due to significant energy impairment: people who may too unwell to attend events, and whose concentration span is limited, sporadic and unpredictable due to “brainfog”. This is the very group that welfare policy makers have assumed are “just tired”, like everyone else, and who simply need to “try harder”.

We heard that their day to day reality is very far from this stereotype. The flexible setup of our research forum meant that people could take part from home, at time of their choosing, and had two weeks to respond to questions. Researcher, Stef Benstead, has collected the responses of our participants to the research process: It was often the first time that anyone had shown any interest in their experiences or valued their opinion on matters relating to chronic illness and inclusion in society. “I appreciate the opportunity to be heard and to share my experiences. No-one has ever really asked me about any of this before actually!” “I too have struggled to answer the questions only because it’s been so long since anyone wanted my opinion and the brain fog that comes with my illness making it difficult to remember the right words.”

Participants were grateful for the opportunity to take part in something that was intellectually stimulating and of relevance and interest to them: “I found it difficult to focus and switch my brain on again but it did me the world of good. You have all been amazing and it is a privilege to have spent time with you.” “The project has definitely helped me think more deeply about disability issues and the difficulty of applying frameworks to them.”

The forum created a community of people with shared experiences who could gain comfort from and fellowship with one another… “Thank you so much for creating this place where we could listen and be heard.” “Thanks to everyone who contributed; I’ve felt equally comforted and outraged by your stories.” … and which provided a space for safe expression of fears, difficulties and things that help. “I have appreciated learning from and listening to the perspectives of others without feeling judged, pitied or different.” “It was great to be able to talk in a non judgemental [sic] environment, while learning the similarity & differences joining people with life limiting illnesses”

Participants appreciated the learning that they derived from one another… “It has also many [sic] meant I have a better understanding of my own relationship with my health and conditions. I think there is a long way to go but I feel I have greater acceptance and understanding.” “I found it to be a helpful, informative and sometimes profoundly moving experience.” … which they were able to use to improve their lives. “I am incredibly grateful to this project for finally giving me the language to express who [sic] my chronic illness effects me in a way both that I can explain it to those who need to know, but particularly to decision makers. That has made a huge difference in getting somewhere with getting the help I need.” “I am slightly more confident in ascertaining my own health needs and have improved my relationship(s) with my health providers, or made efforts to, so that I can feel more in control.”

Taking part in the forum gave participants hope for the future: that things could be better and the damage of the past eight years was neither necessary nor inevitable. “As awful and abusive as I think the last 7 years have been for people like us, it’s triggered a kind of activism and urgency in people with chronic illness and the people who care about us that I hope we can come out of the other side in a better place, where we’re treated like people. So, yes, thank you for being part of giving me hope again.” “I have really appreciated this opportunity and think it has great potential… I do hope it continues in some way as it is imperative we chronic illness folk have a platform to air our opinions and experiences; and I hope to work with you all in the near future.”

It was important to participants that the work be taken forward and put into practical effect, rather than being merely more words: “It’s good in that it’s enabled people to express their views but it’s been too wordy – far too concerned with terminology… My understanding of the social model or any other theoretical construct is low because I lose the will to live trying to plough through the words which at the end seem to bear little relation to my life.

However, this project is probably the first stage in disabled people getting together online to campaign for better treatment, especially in relation to our iniquitous benefits system.”

For further information on the project visit chronic-illness-citizenship-mobilising-collective-voice-social-change/

#DRILL HASHTAG FEED

Tweets from @drill_uk

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

Darlene Corry from #DRILLUK & Paul Rooney from @NI_SCC are discussing the research “Is it Me?: How do attitudes wi… https://t.co/AIel3WBlc6

1 week ago
Catherine Hale Catherine Hale @octoberpoppy

Disability equality education in schools is weak to non-existent. This strong report from @evanodell and #DrillUK i… https://t.co/JU7IIBtUqa

2 weeks ago
Disability Action NI Disability Action NI @disabilityni

Read more about the ‘Is it Me’ research and how you can participate and help me a difference. Deadline to participa… https://t.co/zxzieTMaer

1 month ago
NDTi Research NDTi Research @NdtiResearch

‘Supporting people with learning disabilities to have positive sexual relationships’ – new blog by Anna Marriott fr… https://t.co/6WeklWVjpg

2 months ago
DRILL UK DRILL UK @drill_uk

@CforWR a #Drilluk & @TNLComFund are delighted to share their first publication from the Chronic Illness inclusion… https://t.co/9384X63ZsM

2 months ago
InclusionScotland InclusionScotland @InclusionScot

Here are the 3 key findings from @toiletsonthego research. Public toilets can be:
Slide 1. Difficult to find and ac… https://t.co/halmrYWgGu

3 months ago
InclusionScotland InclusionScotland @InclusionScot

Congratulations and well done to the team @toiletsonthego for a fantastic launch of their #APublicInconvenience res… https://t.co/ohsRK46g4U

3 months ago
Disability Action NI Disability Action NI @disabilityni

The @drill_uk team is in Belfast today @QUBelfast to hear about the positive projects being funded through the… https://t.co/Bpk3NFHsjf

3 months ago
Chronic Illness Inclusion Project Chronic Illness Inclusion Project @chronicinclude

We are in Belfast!
Huge thanks to the team at #drilluk for bringing me and @VictoriaClutton here to share our rese… https://t.co/o9FA8jmvqh

3 months ago
Disability Action NI Disability Action NI @disabilityni

@mencap_charity is running a national survey of people with a learning disability in the UK. Read how you can take… https://t.co/YtlgTjBSsm

3 months ago
Disability Action NI Disability Action NI @disabilityni

Mutual benefits: The Potential of disabled people as foster carers – a #Drilluk project by @worcester_uni based on… https://t.co/MA23j94rpX

3 months ago
DRILL UK DRILL UK @drill_uk

A #Drilluk project by @worcester_uni based on the potential for disabled people as foster carers has featured in an… https://t.co/IMwprXL4RD

3 months ago
Disability Action NI Disability Action NI @disabilityni

We want to hear what disabled people in N.Ireland have to say on “How attitudes in the adult social care system imp… https://t.co/phsWZZ3naJ

3 months ago
DRILL UK DRILL UK @drill_uk

Do you want to have your say about adult social care? Are you a disabled person in NI & have experience of adult so… https://t.co/Q9seeDzz9v

3 months ago
LevelsAreHigh LevelsAreHigh @ScarcityStudios

Check the full story here . 1000s more views then the biggest bloggers in uk with half the subs #reach #drillukhttps://t.co/UMHJs1xZSx

4 months ago
DRILL UK DRILL UK @drill_uk

@MartinSLewis we are a @TNLComFund 4 nations research programme called #Drilluk it is led by disabled people for di… https://t.co/ORZJ9DfDIH

5 months ago
DRILL UK DRILL UK @drill_uk

It’s Tonight! Don’t miss out on the #Drilluk disability talk show. We’ll be telling funny stories relating to disab… https://t.co/UMfii90Rz4

5 months ago
DRILL UK DRILL UK @drill_uk

We’ll be talking movies, buses, street clutter and tennis finals. Come along and join in the conversation at the… https://t.co/WGxTsexNjt

5 months ago
DRILL UK DRILL UK @drill_uk

Speakers for the #Drilluk Disability Chat Show are Patricia Bray, June Best, @DrC_82, Danny O’Neill and Tony O’Reil… https://t.co/oGOrVsatme

5 months ago