So, you’ve been asked to share your story again…
Our Policy Manager, Charlotte, explains what happens next.
There it is, that megaphone graphic again. The universal symbol of ‘we want to know what you know.’
Whether it’s a survey or an invitation to share your experiences in your own words, I know it can sometimes feel like people are constantly asking disabled people to talk about their lives.
This time, though, the request is from us, an organisation led by and for disabled people. I hope that makes a difference to you when you think about sharing with us.
These requests take time; sometimes it’s a few minutes, sometimes people spend longer. I also know that it can come with a personal cost. Asking you to reflect and think about things can throw up all sorts, but you do it anyway. Thank you.
I think about all of this when I ask you to share your experiences with us. I think about the time it might take you, how you might feel afterwards, and what you might rightly expect to happen as a result of doing so.
It’s important to us at Difference North East that disabled people’s experiences shape the way we work, the things we campaign for and the research we do. The work we do is often made possible because of your contributions, and it is always made more powerful by them. Whether you are a member, an ally or simply somebody interested in getting involved, your contributions are valued.
And as I’ve just finished working on our response to the Timms Review of PIP, it felt like a good time to explain a bit more about what happens after you share your experiences with us. But first, for those who haven’t been following the review, let’s explain what it actually is.
What’s the Timms Review?
The Timms Review is an independent review looking at Personal Independence Payment (PIP), including how the system works and how it is experienced by disabled people.
The review is being guided by a steering group made up of disabled people, organisations, and people with expertise and experience of the system. The aim is for disabled people’s experiences to help shape the recommendations that eventually come out of the review.
As part of that process, organisations, and individuals were invited to submit evidence and recommendations.
Share Your Story Again: So far so good…
As your responses start coming in, I read them. Sounds simple, but I wanted to say that. I read them all.
And I think about what you’ve told us, what the issue means to you, how you’ve described it affecting your life and what you want to see change.
Every time we do work like this, I feel a huge sense of responsibility. Not just to accurately capture what people are telling us, but to handle your experiences with care and respect.
A few days before the deadline, we usually try to share some of the themes we are hearing. Sometimes that resonates with people and encourages others to contribute too. Sometimes it’s just a gentle reminder to those who meant to respond but hadn’t had the chance yet.
Share Your Story Again: The Deadline!
And by the time the deadline approaches, I usually have a sense of your collective voice. But even if you are a last-minute contributor, your experiences are still given just as much consideration.
One of the things I love about doing this work is that people often don’t just tell us what the issues are. They also tell us what they think the solutions could be. Honestly, this is often a relief to me because you come up with things I wouldn’t think of. The true definition of experts by experience.
Then it’s time to start weaving things together and writing the submission.
Share Your Story Again: The Timms Review
If you read our submission to the Timms Review, you’ll see that the recommendations are based directly on what people told us needed to change. Of course, there will always be things missing. No single response can capture every experience. But it’s important to stay true to the evidence people have shared with us.
Choosing which quotes to include is often the hardest part. People are incredibly generous with their experiences, thoughts and feelings, and I try my best to capture that respectfully.
Then, eventually, I have a final draft, and I read it. Re-read it. Re-read it again… until eventually it’s time to bite the bullet and submit it.
The submission is in. Then what?
Well, usually it’s a cup of green tea and a stretch!
But this is an important question because I’ve been asked whether sharing your stories really makes any difference.
My answer is probably not as straightforward as I would like it to be. Because change rarely happens in a straight line and often takes time, seeing the impact of policy-related work can sometimes feel slow.
For me, the importance of this work is in making sure disabled people in our corner of the world are part of the conversation, building evidence together and creating pressure for change.
And while we do that work, the Timms Review continues.
Written submissions like ours are just one part of the process. Our evidence will now sit alongside submissions from disabled people, organisations, and others from across the country.
Over the summer, the Timms Review steering group plans to continue engaging with disabled people and organisations as it develops recommendations.
If there are opportunities for Difference North East to be involved in those next stages, it will be with disabled people in our region.
In the meantime, I’ll be continuing to listen to what disabled people are telling us, and following the review closely.
So, you were asked to share your story again…
I think we both know it won’t be for the last time, but I hope this has shown, even in some small way, what happens after you do and how much we value the trust you place in us to make it count.
Thank you to everyone who contributes to our work. I’m off to enjoy my green tea in the sunshine, but if you have something you want to say, perhaps over a cuppa of your own, you can share your experience with us here.
