Big Society, Disability and Civil Society Research

Website for ESRC research project 'Big Society? Disabled People with Learning Disabilities and Civil Society'

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What would happen to you if advocacy services were cut?

I would lose touch with my friends and I wouldn’t have anything to do, I would lose my job at the moment I speak up for people who can’t speak and I lead on our projects like Healthy surfers which teaches people to us the internet safely and look up health information to help people understand things,  I wouldn’t be able to do that without this organisation  (Jodie).

I would be lost without my advocacy service. They have given me a lot of advice around benefits and letters to help me understand what they are about (Emma).

I would lose my friends that I have made (Glen).

I would probably be on Job Seekers and struggle to find a job. I would lose my job, I represent people and I couldn’t do that, I would be lonely, My advocacy work has helped me and a lot of other people feel valued, where would we be without advocacy. (Robert).

I would lose my independence and confidence to travel alone I am learning about things at Speakup and I couldn’t do that or see my friends I would have nowhere to go. (Antony).

I would have less things to do. I would lose my confidence, I would have to find another job so that i could pay my mortgage; but jobs are hard to find for people with learning disabilities. I have two girls I wouldn’t make ends meet. I would be lonely my advocacy group forms part of my circle of support. (Vicky).

I would have to find another job so that I could pay my rent. I would feel lost because i wouldn’t be able to contact my friends. I would lose my new skills. I would not learn new things, At Speakup I have learnt to read much better than I did and I represent people and speak up about things that make our lives bad and speak up for things that make our lives good I couldn’t be able to do that. (Alison).

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How has self advocacy helped you or other people?

It has given me job experience and more understanding of other people, it has given me more confidence. I have got good I.T. skills and I have had a chance to use my skills. I am also a trainer for My Health and I’m A Person Too which are training courses to train doctors, nurses, the job centre, the police, receptionists and students how to work with people with a learning disability and/or autism. I have been involved in acting in some of the DVDs Speakup has made, these DVDs help people to make decisions and show them how to cope with challenges in life. I am a vice chair of the Speakup for Autism group which supports people with autism and works with students from Sheffield Hallam University to research different ways to help people with autism. I am also a committee member at Speakup where we make decisions about the organisation and I also type the minutes. (James)

Being a self advocate has gave me more confidence at meeting new people and helped me get a job and also live on my own (Adam).

Being a self advocate has gave me more confidence to travel independently before coming to my advocacy group, i was not aware of road safety. I am now much better at this bus stop incident (Antony).

Being a self advocate has helped me to have the confidence to speak up for myself. I was walking round Tesco and security guard was following me around the shop. Someone who works at Tesco came up to me and started to question what is in my bag. I felt like he was accusing me of stealing. I explained to him this has happened several occasions. I feel discriminated against (Glen).

Being a self advocate has helped me to be more independent and give me more confidence to travel to new places on my own before travelling would make me feel really anxious. I have learnt since coming to my advocacy group to manage my money better and pay my bills (Emma).

Being a self advocate has helped me to asking for advice when you receive jargon information for e.g. letters i get i tell my self advocacy group to reassure me or help me understand (Shelley).

Being a self advocate and coming to the self advocacy group has helped me with my social skills and speak more clearly. I have also improved on my writing skills (Sharlene).

Coming to my advocacy group has helped be to have more confidence in my ability to live on my own, and be a part of the community. My roles within the Partnership Board, Scrutiny Panel and Inspection work has allowed me to speak up for others on their behalf. I have also been involved in interviewing professionals and making sure they understand about disabilities (Robert).

Being a self advocate has made me more confident in new things. I have more friends than i had at school and college. Since i came to Speakup, i have done things that i have never dreamed of doing like being an inspector for the CQC and being a representative/trainer for different projects. I enjoy my work and I hope to continue with it in the future. I am also the project lead for Healthy Surfers which is a project to train people on how to use a computer safely and look up health information about ourselves or our families. I am also a trainer for I’m A Person Too which is a training project to train doctors, nurses, the job centre, the police, receptionists and students how to work with people with a learning disability and/or autism. (Jodie).

It has given me more confidence with reading and with computers. It has helped me to speak up at meetings. I have learnt how to work out how to know the right change when I pay for things. I have learnt how to plan journeys. I am an CQC inspector and I feel proud and I’m able to help people to speak up for themselves if they can not speak up for themselves. It has also helped me to be a better parent and to be able to do parenting training to other people who are wanting to become parents themselves. I am also the project lead for Healthy Surfers and a trainer for I’m A Person Too. (Vicky).

It has given me more confidence to speak in meetings and taught me how to support people. It has helped me to learn new skills like reading, writing and computer skills. It has given me a job and taught me how to do online banking. I have learnt a bit about travel timetables. It has helped me in times of crisis. I am the Regional Rep for the Yorkshire and Humber Forum for people with leaning disabilities and I sit on the National Forum for people with a learning disability and it’s given me more confidence to talk with a group of people who I don’t know. When my mum died with just a bit of support from my advocacy group I organised my mum’s funeral and also a minibus to Blackpool to scatter her ashes, my family thought I was a very strong sister and auntie. I am a member of the Think Local Act Personal group and I co chair the partnership board. I am also a trainer for I’m A Person Too which is a training project to train doctors, nurses, the job centre, the police, receptionists and students how to work with people with a learning disability and/or autism. I am also chair of person centred planning and I made three DVDs called “It’s my Life”, “It’s Still my Life” and “It’s Still Your Life” and these DVDs help people with learning disabilities and/or autism and also help to train students and health and social care workers in person centred planning. I am a committee member with 11 of my colleagues and I sit on the health sub group. (Alison)

At my advocacy group I am a trustee, caretaker and a key holder, I open up the building in the morning. I am on the committee and I do the banking. I am a leader and support people to go to the regional forum. My advocacy group has made me go forward, helped me to budget, helped me to move house. I help to sign off the Speakup accounts, this has made me feel proud. (Roy)

What Advocacy has done for me, its given me confidence and the ability to make new friends/colleagues.  It has also given more experience in the work place to enable me to get a job in the future.

I am also a trainer for I am a person too, we have trained doctors, police, nurses. receptionists, students. 

Doing this training has helped me no end as i have grown in confidence with my communication skills .

I have also acted in a Budgeting DVD, as my mum was poorly for some time so i had to take over some chores.

I am also a committee member and a Trustee but i am new to this.


What Advocacy has done for me  –  I have only been here for six weeks

I have made new friends.

I have acted in Tenancy DVD and one about Banking.   I gained more confidence in speaking to people.


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What is a self-advocacy?

Campaigning for things what we are passionate about fighting for our rights(Robert).

Help and advice for people who are having problems with their life helping them to speak up.( Emma)

Being a rep for people with learning disabilities sharing other opinions on their behalf.(Alison)

Speaking up in a group at meeting and forums/conferences and presentations.( Vicky)

Gives me independence and advice. (Jodie).

Helping others if they have a problem supporting each other.

Helps me with more confidence to travel and speak up for other people  and being a CQC Expert By Experience (Vicky).

Speaking up for yourselves/sharing what you have learnt with others giving other people confidence.(Graeme)

Support and talking on somebody’s behalf if they can’t do it for themselves (Alison).

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Why self-advocacy (still) matters

Why self-advocacy (still) matters

In 2011, the Disability News Service[1] reported devastating cuts to the funding for self-advocacy organizations in the UK.  They reported that the number of groups who are members of People First had dropped from 120 – 97.

We asked self-advocates to tell us what self-advocacy is and why it still matters to them.  In the blog posts that follow self-advocates tell us what they think.


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Accessing the digital age: blog post for Disability Studies in Education Conference, 2014

Accessing the digital age with a disability

Researchers believe the Internet plays a curious role in the lives of people with a disability.

Professor Dan Goodley form The University of Sheffield and Dr Katherine Runswick Cole from The Manchester Metropolitan University will be presenting in July at the Disability Studies in Education conference 2014 (DSE14), to be held at VU.

They say the Internet has played an interesting role in the prevalence of labels and new diagnoses associated with disability.

“Some health professionals we’ve interviewed say that they often don’t feel as up-to-date as some parents who visit them with ready-made diagnoses straight from the Internet,” they said.

“Our concern is the source of the knowledge that parents might be drawing from. However, should we consider the information valid if the source is a peer reviewed journal article?”

“Despite some of the challenges there is no doubt that the Internet’s subsequent developments such as social media have provided platforms and the means for groups to organise themselves and campaign for change.”

“Recently in the UK, the WOW petition enabled people with a disability and their allies to get 100,000 signatures to force a debate among Members of Parliament in the House of Commons. The petition asked for a cumulative impact assessment to explore the affects of welfare and benefit cuts on people with a disability,” they said.

While the Internet presents both opportunities and challenges for those with a disability, Dan and Katherine are adamant that gaining access to Internet content is ultimately the biggest issue.

“The Internet has drastically changed our world – yet, most people with a disability are still excluded from the digital experience. Unfortunately, people with a disability are still more likely to live in poverty and be unable to afford the hardware and software necessary to make the internet accessible to them.”

Access to functional hardware and software can be costly but it’s not the only barrier to accessing the Internet for people with a disability. Website content has to meet certain accessibility standards to enable the software and hardware devices to read and communicate the information on the site to the individual.

In some cases, certain sites are simply not compatible even if a person has the required hardware and software. The Australian Government’s Web Content Accessibility Guidelines (WCAG) 2.0 hopes to ensure that people with a disability can access all web content if they have the necessary software and equipment.

Victoria University’s Director of Web Services, Silvia Sanchez, believe web accessibility is an issue that can definitely be solved.

“Bridging this digital divide is easier than most people think,” she said.

“Over 4 million Australians have a disability. That’s 1 in 5 people, which means that a large number of those users might be navigating through our website.”

“People may think web accessibility is hard to implement – but it’s not, especially if you plan and implement it from the beginning of a project.”

“We have a list of web accessibility requirements that we use to test every new implementation. We believe websites should be available to everyone,” she said.

Registrations and abstract submissions are now open for the Disability Studies in Education conference 2014.