Equal Lives' 30th Anniversary survey - Results Part 2

There is a background collage of clocks and timers in pale semi-transparent red. On top, a large piece of paper with a masking tape attachment reads '1996 - 2026: Your experiences' in red text. In the top right-hand corner of the graphic is the Equal Lives logo: Equal Lives is written in blue text, with a tagline written in purple - Free from disabling barriers. There are 3 orange birds flying into the air above the writing.

Welcome back to the second out of three blog posts sharing the results of our 30^th anniversary survey. This blog focusses on the second question, which was: What has been one of the most significant experiences you’ve had as a Disabled person over the last 30 years?

As this is the most personal question in the survey, we had a large range of answers, so the numbers of common answers are slightly smaller. However, we still noticed shared themes emerging. Here’s what came out in people’s experiences.

What has been one of the most significant experiences you've had as a Disabled person over the last 30 years?

[Alt text]: A colourful pie chart showing the results of the question grouped by theme: Experiences with PIP and the benefits system (6), Increased confidence and/or self-knowledge (5), Changes to personal independence and freedom (5), Difficulty accessing care and support (4), Discrimination and responses from public (2).

Top Answer

The most common theme (6 out of 28 people) was people’s experiences with PIP and benefits system. Respondents spoke about financial hardship and broken systems, as well as the administrative and emotional labour required by Disabled people to get support. Here are some full answers:

• “Having to prove I’m disabled all the time, filling in countless forms, assessments by hostile personnel, feeling of total helplessness.” - Debbie B.

• “Got my PIP claim.” – Felicity HR.

• “The awful assessment I had in 2020, when I was made to change from DLA to PIP, and my allowance was reduced. After 10 years of the high rate of care. Even though I was more ill. I was too ill to know how to challenge it and the advocate who had promised to support me became ill themselves. Plus, I would like to add, there have been TV programmes that have denigrated all those who claim benefits, and there have been recent statements from Tory and Labour politicians that they want to spend more on armaments and cut the welfare budget so they can fund that spending. That is frightening.” - Denise L.

• “Struggles with securing finances due to corrupt benefits system.” – Anonymous.

• “Losing all my benefits in 2015 for three years cos a neighbour decided to inform them I was walking my dog when I was able to.” – Dale B.

• “No longer being able to work due to multiple disabilities and knowing that my income and therefore future, is in the hands of people who wish I didn’t exist.” – Anonymous.

Joint 2nd most common answer

There was a tie for the next most popular theme. 5 respondents shared experiences of changes to personal independence and freedom. People talked about societal barriers, and how different experiences had become closed off or opened up to them. We were delighted to see our own Shopmobility service get a mention. Below are some full quotes on this theme.

• “I am extremely appreciative of the improvements that have been made in the last 30 years. However, I still face barriers (being in a wheelchair) pretty much every day. The worst experience that I've had as a wheelchair user, is my wheelchair being lost on flights - on three separate occasions! The best experience was discovering Shopmobility. This opened up a whole new world for me and gave me back a big part of my independence.” – Anonymous

• “Having to give up driving. Due to my age (76) and increased incapacity, I have had to give up my Motability car and the freedom, and independence it gave me.” - Stephanie A

• “Finding it hard to travel on public transport - London Underground - lifts out of order etc” – Laura L

• “In the time that I've been a mobility aid user (11 years), I have experienced major barriers when using transport, especially when travelling by train. I even gave up on travelling by train for a couple of years, which made my world very small, and I was unable to visit family. However, over the past few years, the frequency of rail travel barriers has reduced substantially. Things still go wrong sometimes, usually due to poor communication from the train companies, but these occasions are much rarer.” – Anonymous

• “Being fully independent (mountaineering, climbing etc) to being dependent on others to be independent.” - Anonymous

  
  

  

  A photograph of our Shopmobility site - multiple scooters lined up against a colourful mural.

Joint 2nd most common answer

The other theme in joint second-most common – with a further 5 people – was how people’s experiences have led to improved confidence and self-knowledge. Some respondents spoke about support from others, while some mentioned increased self-acceptance. Here are the full quotes.

• “Actually, when I worked at Equal Lives, it made me understand how transformative it could be to work in a truly inclusive workplace which lived and breathed the social model of disability. This changed the way in which I felt about myself and made me stop apologising for who I am. I have been able to carry the impact of this experience forward into my future work and life in general.” – Jen H

• “My ADHD diagnosis however has given me way more confidence to advocate for myself and feel comfortable in my identity.” – Ruth S

• “The encouragement I have received in my journey with college and aspirations.” – Nichola A

• “As a survivor of anorexia in my adolescence, I experienced shame for my condition, but back then my family and friends supported me to overcome it with love and compassion. The future of disability lies in the dignity and care we are treated with and the support and love of our community.” – Ana BC

• “My work for Equal Lives. The opportunities the organisation gave me launched my successful career in my chosen field. It gave me the confidence to know what I needed in order to approach other paid and voluntary employers.” – Anonymous

Other responses included 4 respondents talking about the difficulty of accessing care and support. 2 respondents also shared stories of discrimination and reactions from the public to their disability, which ranged from offering help, to asking intrusive questions, to assault. 1 respondent also spoke about the experience of witnessing excellent accessibility in another country, and this shining a light on the UK’s systemic problems. Please note that several respondents chose not to share their experiences for this question, which is why the pie chart adds up to a smaller sample size.

Do these themes resonate with you? What do you think about these results? As ever, we’d love to hear from you at communications@equallives.org.uk.

To read the final set of results, and to hear some reflections from Equal Lives, click here for the third blog.